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Psychological transformation in survivors of terminal cancer Fairbanks, Wendy 1990

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PSYCHOLOGICAL TRANSFORMATION IN SURVIVORS OF TERMINAL CANCER By WENDY FAIRBANKS B.A., M c G i l l U n i v e r s i t y , 1978 R.M.T., Sutherland-Chan School, 1982 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS 'FOR THE DEGREE OF MASTER OF ARTS i n THE FACULTY OF GRADUATE STUDIES Department of Cou n s e l l i n g Psychology We accept t h i s t h e s i s as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA September 1990 © Wendy Fairbanks, 1990 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of C o u n s e l l i n g P s y c h o l o g y The University of British Columbia Vancouver, Canada Date S e p t e m b e r 1 9 , 1 9 9 0 DE-6 (2/88) ABSTRACT The purpose of this study was to understand the meaning of transformation in surviving terminal cancer. An existential-phenomenological approach was used to interview five participants who had lived at least five years beyond the diagnosis of widely metastatic or terminal cancer. Review of the literature which addressed the issue of transformation suggested that life-threatening illness is an opportunity for growth. There are many cross-cultural accounts of transformation, and many studies of survivorship qualities, but l i t t l e research into the transformation process as i t is experienced by cancer survivors. Participants told the story of their recovery from cancer and how i t changed their l i v e s . Cochran's (1986) dramaturgical approach provided the model for capturing the meaning of this experience in story form. Each interview lasted from 2 1/ 2 to 5 hours. Interviews were audio-recorded and transcribed. Analysis of the interviews followed Colaizzi's (1978) method. Significant statements were extracted from the protocols, themes were formulated, and a description of the experience was written. Other sources of data were used in addition to interviews. An autobiography and a series of articles were collected from two participants. This written material was analyzed in the same way as the interviews. The experience of the researcher also served as data, and was analyzed through reflective and descriptive methods. Conducting interviews, s o l i c i t i n g written descriptions and including the i i i researcher's experience allowed the data to be more broadly supported. Results of the study were validated by the participants in a second interview. They confirmed that the 38 themes and the common pattern of transformation derived from the five participants accurately reflected their own experience. The results indicated that psychological transformation in survivors of terminal cancer is a s p i r i t u a l journey. In allowing a l i f e -threatening disease to become an opportunity for personal awareness and growth, people can transform their illness into a s p i r i t u a l teaching. Serious illness can teach people about the meaning of life., and give their own lives purpose and direction. Through this affirmation of l i f e , and by following their purpose and path, healing can occur. This healing not only moves people toward wholeness, but i t holds the potential for transforming and healing the problems of others. This pattern of transformation has practical implications for the nature of support useful for people experiencing a health c r i s i s , and has implications for the designing of effective psychosocial support for cancer patients. i v TABLE OF CONTENTS Page A b s t r a c t i i Table of Contents i v Acknowledgements v i i CHAPTER 1: INTRODUCTION 1 CHAPTER 2: LITERATURE REVIEW 4 P h y s i c a l D i s c i p l i n e s 5 Psychobiology 5 Mind-body h e a l i n g 6 Behavioural Medicine 8 A c t i v a t i n g the w i l l to l i v e 8 Coping 10 Opportunity f o r change 12 Cancer and c h r o n i c disease 13 Malignant and benign disease 13 Long-term s u r v i v o r s and short-term s u r v i v o r s 14 P s y c h o l o g i c a l i n t e r v e n t i o n 15 P s y c h o l o g i c a l D i s c i p l i n e s 17 Existential-phenomenology 17 Search f o r meaning 17 S e l f - d i s c o v e r y 19 Mastery 21 Jungian Psychology 24 A c t i v a t i n g the inner healer 24 A f f i r m i n g one's d e s t i n y 25 Becoming whole 26 Neo-Jungian Psychology 28 Se l f - u n d e r s t a n d i n g 28 Transpersonal Psychology 29 Hero's journey 30 S p i r i t u a l emergence 31 R i t e of passage 33 V Page Spiritual Disciplines 34 Amerindian Philosophy 34 Shamanistic i n i t i a t i o n 34 Buddhist Philosophy 37 Archetypal'journey 37 Manifesting the divine 39 Summary of the transformative journey 40 Spiritual medicine 41 Awakening 42 Call for aliveness 44 Recovering the soul 46 Manifesting love 48 Summary and Critique 48 Physical Disciplines 48 Assumptions 48 Criticisms 50 Psychological Disciplines 51 Assumptions 51 Criticisms 52 Spiritual Disciplines 52 Asumptions 52 Criticisms 53 CHAPTER 3: METHOD 55 Existential-phenomenological Research 55 Dramaturgical Approach 57 Co-researchers 58 Selection of Co-researchers 59 Demographic Information 61 Interviews 63 The F i r s t Interviews 63 Preamble 65 Interview questions 65 The Validation Interview 65 Other Descriptive Methods 66 Procedure 68 Protocol Analysis 69 v i Page CHAPTER 4: RESULTS 73 Experience of the Researcher 73 Interviews 75 I n i t i a l I n terviews 75 V a l i d a t i o n I n t e r v i e w 77 The Case of P. 78 Context for A n a l y s i s 84 C l u s t e r s of Themes 86 Themes 87 Phenomenological D e s c r i p t i o n 115 E s s e n t i a l S t r u c t u r e 129 CHAPTER 5: DISCUSSION 133 L i m i t a t i o n s of the Study 133 T h e o r e t i c a l I m p l i c a t i o n s 134 P r a c t i c a l I m p l i c a t i o n s 139 I m p l i c a t i o n s f o r Fur t h e r Research 141 Summary 142 REFERENCES 145 APPENDIX 155 i v i i ACKNOWLEDGEMENTS I am grateful for the five individuals who shared their story and their enthusism for l i f e ; for family, friends and Doug, whose support through the years of this project help l i f t my s p i r i t s ; for the solid backing of Larry and assistance from my committee members; and for a l l the help that was there when I needed i t : from acquaintances, my garden, the sea, and my own inner healer. 1 CHAPTER 1 Introduction There is a Buddhist story about a famous Zen master. In his youth he became terminally i l l and was said to have only a few weeks l e f t to l i v e . According to the story he entered his cloister vowing not to emerge unt i l he was either enlightened or dead. A l l we know is that he became one of the most famous teachers of his time (Moss, 1986, p.286). This simple story suggests several things. F i r s t , illness is considered a meaningful event, of personal significance and collective value. Second, in surviving a life-threatening disease a person may undergo a transformation. And third, this transformation does not just happen; i t requires a courageous and determined search for one's essence. This old story has much relevance today. One in every three Canadians w i l l develop cancer at some time during their l i f e (Canadian Press, 1990). Despite earlier detection of the disease, and more aggressive and technologically sophisticated treatment, the death rate from cancer is increasing (Lockhart, 1977). Cancer is now the second leading cause of death in North America. Statistics Canada figures show that one in every four men, and one in every five women w i l l die from the disease (1990). There is currently a surge of interest in the way individuals cope with a life-threatening i l l n e s s . A number of studies suggest that there 2 are certain "disease-fighting" attitudes that may significantly alter the course of the disease (Cunningham, 1987). Other studies indicate that cancer patients who significantly outlive their prognosis have very different attitudes and behaviours from those with the same prognosis who do not live long (Achterberg, Simonton, & Simonton, 1977; Derogatis, Abeloff, & Melisaratos, 1979; Hislop, Waxier, Coldman, Elwood, & Kan, 1987; Weisman & Worden, 1985). And yet, while there is much anecdotal and autobiographical evidence, there is very l i t t l e direct research that looks at what i t means to survive a life-threatening illness and be changed by i t . This is the topic of the present study. The purpose of this study is to illuminate the changes and personal growth that have occurred in survivors of terminal cancer. The perspective of this study is that cancer is a path of personal transformation and a search for one's essence. The process of healing a life-threatening disease is primarily a s p i r i t u a l journey. What is meant by s p i r i t u a l journey is a pilgrimage that is spirited and f u l l of v i t a l i t y , as well as one that connects people to the activating or essential principles of their li v e s . This journey takes people to the core of their being. It is proposed that some survivors of terminal cancer have undergone radical psychological transformation. By the term "radical psychological transformation" I am referring to a healing process which goes beyond the restoration of mental and physical health, and involves the process of becoming a whole and individuated person. Healing is viewed as a transformative and a s p i r i t u a l task. Not only can these survivors teach us about the healing process, but their 3 experiences can clearly show us the relationship of healing and the movement toward wholeness. An appropriate method for documenting this process is that of phenomenological interviews with individuals who have experienced a transformation in their recovery from cancer. By inviting people to t e l l the story of their transformation, and then looking for the commom themes of their experience, one is able to capture a rich description of the larger human drama of s p i r i t u a l growth through i l l n e s s . This makes i t possible to develop a map of personal transformation. The significance of this study li e s particularly in the area of enhancing counselling theories and practice. For years clinicians have been developing and implementing psychosocial support programmes for cancer patients. These programmes offer a wide variety of options, including c r i s i s intervention, individual client-centred counselling, peer support, coping s k i l l s training, information-giving and group counselling. A review of these programmes indicates varying effectiveness (Cunningham, 1988). Some of the problems noted are a weak theoretical base and a lack of rigorous programme evaluation. With this study an argument is made for taking a step back: we need to learn from the survivors themselves not only how to cope, but how to grow. Only then can we be convinced that our theories of coping and personal growth truly reflect human experience. As we confirm, reject and qualify existing theory, we are able to design more effective psychosocial interventions for cancer patients. 4 CHAPTER 2 Literature Review To address the issue of transformation in the context of recovering from a life-threatening i l l n e s s , relevant literature must contain the following two assumptions. F i r s t , illness is considered meaningful to a person's l i f e , not just on a physical level, but on a l l levels, involving the t o t a l i t y of their being. Second, every individual is seen as having the innate capacity for health and wholeness. These two assumptions help define the scope of this review. The structure of this review is based on the three dimensions of human experience: body, mind and s p i r i t . The disciplines, and the theories in which they are promoted, are as follows: (a) physical (psychobiology and behavioural medicine); (b) psychological (existential-phenomenological, Jungian, neo-Jungian and transpersonal psychologies); and (c) s p i r i t u a l (Amerindian and Buddhist philosophy, and s p i r i t u a l medicine). These disciplines are separated into distinct categories only for convenience of discussion. It w i l l become evident that the physical disciplines, for example, have a psychological emphasis, and that the psychological disciplines flow into the realm of the s p i r i t u a l . 5 An attempt is made to include literature that joins the concepts of transformation and recovery from cancer but, as this is a new area of research, the task has become one of searching out and integrating the disciplines that shed light on the healing potential contained in a c r i s i s such as c r i t i c a l i l l n e s s . Accordingly, some research is excluded from this review; for instance, studies based on the traditional medical model. Allopathic medicine considers cancer to be the most capricious of a l l illnesses, striking without warning, without meaning, and often without reason. Thus, the traditional medical model does not address the issue of the role of illness in bringing about healing and transformation. Physical Disciplines Psychobiology One of the most exciting developments in the understanding of healing from a western medical viewpoint is the surge of interest in psychobiology. It has been clearly established that stress and emotional states influence susceptibilty and resistance to disease (Cunningham, 1985; Eysenck, 1987; Fox, 1983; Greer, 1979). Psychobiologists are discovering the actual biochemical steps by which the mind can modulate molecules at the cellular and genetic levels, thereby explaining the healing process, the placebo response, and spontaneous and "miracle" cures. For an excellent review of the psychobiology of healing, the reader is referred to the work of Rossi (1986). 6 Mind-bodv healing. There is no lack of evidence of a concrete mind-body connection: in fact, mind and body are now not considered separate at a l l , but an integrated communication system (Rossi, 1986). Candace Pert, former Chief of Brain Chemistry at the National Institue of Mental Health, states: "I can no longer make a strong distinction between the brain and the body" (cited in Kline, 1988, p.26). The main thrust of research in psychobiology is the understanding of mind-body interactions, particularly the effect of thoughts and emotions upon immunity and health. This area of research was popularized by Norman Cousins, who documented his recovery from a life-threatening illness through laughter and a strong belief in the regenerative powers of the mind and body (1979). His own experience convinced him of the power of the belief system in activating the innate healing capacity of the body (1981). Cousins proposes that "belief becomes biology": our hopes and fears and expectations have a physical (biochemical) re a l i t y , and a profound effect upon our a b i l i t y to deal with the challenges of daily l i f e or disease (1989, p. 20). According to this model, essential to the recovery from ill n e s s are: the w i l l to l i v e , hope, optimism, and the belief and determination to make the best of possibilies. A basic assumption of mind-body reasearch is that there is a meaningful relationship between body and mind. The mind has a great power in assisting the body to heal. The body, through physical dysfunction and il l n e s s , has the a b i l i t y to show the mind where healing 7 needs to take place—for example, on an attitudinal level. Thus, mind-body research assumes a purposeful communication between mind and body. In support of this, Rossi (198G) suggests that " i l l n e s s can be a c a l l to stop one's habitual a c t i v i t i e s [in order] to seek out the deeper meanings that are evolving in one's existence" (p. 173). He suggests reframing a symptom as a friendly signal that a creative change is needed in one's l i f e . Two clinicians who have given much publicity to the concept of mind-body healing are the Simontons. From their experience with hundreds of cancer patients they have concluded that a person's attitudes and expectations are crucial to their well-being. They outline four essential steps to recovery (Simonton, Matthews-Simonton, & Creighton, 1978): (a) With the diagnosis of a life-threatening i l l n e s s , a person gains a i broad l i f e perspective; (b) One then makes the decision to alter one's behaviour and be a different person; (c) The immunological system responds positively to feelings of hope and the renewed desire to l i v e ; and (d) Recovered patients improve their self-concept and achieve a better state of psychological health. Central to this process of healing is the philosophy that we take responsibility for maintaining our health. Responsibility in this context means taking an active role in one's well-being. Responsibility 8 does not infer causation: a person is not responsble for their disease; they are responsible to i t . Thus, a person's choices in diet, exercise and l i f e s t y l e , and one's mental and emotional orientation, a l l play significant roles in maintaining good health. How significant are these factors has not been c l i n i c a l l y established. The Simontons' work emphasizes the need for elevating the importance of the mind in healing and wellness. Criticisms of their approach are largely directed at their claims of prolonging l i f e through self-help techniques. Their studies, however, are unique, exciting and deserve attention. Behavioural Medicine Behavioural medicine is an interdiscipinary approach to the prevention, treatment and rehabilitation of physical disease. It integrates biomedical and social-behavioural approaches to i l l n e s s . Activating the w i l l to l i v e . Some researchers regard c r i t i c a l illness as an experience which activates or f o r t i f i e s the w i l l to l i v e . Studies of progress measuring psychological response to the diagnosis of breast cancer indicate that survival is related to patients' attitudes. Of those whose i n i t i a l response was a fighting s p i r i t , 70% were s t i l l surviving after 10 years, compared to 50% of those whose reaction had been denial, 34% who had reacted with stoic acceptance, and 20% with a helpless/hopeless attitude, with p = 0.024 (Greer & 9 Silberfarb, 1982; Greer, Morris, & Pettingale, 1979; Pettingale, Morris, Greer, & Haybittle, 1985). Thus, the w i l l to live f o r t i f i e d by a feisty, determined stance is assumed to be essential to survival. It is not by accident that the term "survivor" has made i t s way into the cancer f i e l d . Many cancer patients share a remarkably similar fate with the survivors of concentration camps. Treatment of cancer is brutal, and prospects for survival are bleak. How prisoners coped with a parallel experience has been well-documented (Eitinger, 1964), and can teach us about l i v i n g with severe stress and life-threatening disease. In Dimsdale's (1974, 1980) study of 19 survivors of Nazi concentration camps, he observed a variety of coping behaviours. He concluded that the most basic strategy of a l l was the w i l l to l i v e . Two other extremely powerful motivating strategies were the mobilization of hope and the belief in survival for some purpose. Many others have echoed the central need for having a strong w i l l to live in order to survive cancer (Dosdall, 1986; Fiore, 1979; Glassman, 1983; Israel, 1978; Siegel, 1986; Simonton, 1984; Simonton, Matthews-Simonton, & Creighton, 1978), as well as surviving other serious illnesses (Hutschnecker, 1966; Jaffe, 1980; Moos & Tsu, 1977; Pell e t i e r , 1977). Claude Dosdall is a local (Vancouver) example of a cancer survivor who is livi n g with a terminal diagnosis. He was diagnosed in 1977 with an inoperable brain tumour and told that he had a year to l i v e . From his own experience of survival, he has concluded that a patient's expectation of recovery, a positive attitude, determination, and belief in survival are crucial to recovery (1986). A person must activate this 10 w i l l to live by investigating and changing the beliefs, thoughts, feelings, attitudes and l i f e s t y l e choices which are not health-promoting. Studies of survivors indicate that what people need most is a strong positive approach to their c r i s i s . The w i l l to l i v e , the faith, belief in and hope for survival accompanied by the conviction that l i f e is worth living—these are indispensible ingredients of survival and recovery. Coping. One of the largest areas of cancer research is that of coping. Hans Selye, father of the concept of stress, and himself a survivor of cancer, asserted many years ago that " i t would not be very d i f f i c u l t to understand that a person who is about to die of cancer is under stress" (Tache, Selye, & Day, 1979). It is implicit in this statement that life-threatening illness is stressful, and that some people may require assistance in coping with this stress. For detailed accounts of stress and coping theory the reader is referred to the work of Lazarus and Folkman (1980, 1982, 1984) and Menaghan (1983). A review of this literature is beyond the scope of this paper. The most impressive application of coping theory to the study of cancer patients has been documented by Weisman, Worden and colleagues (1975, 1976a, 1976b, 1977, 1978, 1979, 1983, 1984). Their results are based on large patient samples, well-designed studies, and ample use of tests and s t a t i s t i c a l procedures measuring coping behaviour and 11 psychosocial variables. In a thorough investigation of how cancer patients cope with their i l l n e s s , they have identified reliable predictors of distress that can be measured at diagnosis, and which correlate with future vulnerability. "Vulnerability" refers to the emotional and psychological distress that accompanies or develops in response to a problem. They propose that a reciprocal relationship exists between low emotional stress and effective coping. The following table summarizes their findings, and suggests a coping profile for cancer patients: Low emotional stress  and effective coping. 1. optimistic and hopeful 2. resourceful 3. assertive 4. high ego strength 5. stable backgrounds 6. few marital problems before cancer 7. few regrets about the past 8. coping by: (a) taking firm action (b) confronting r e a l i t y (c) redefining problems; finding something favourable about i t (d) seeking constructive help; accepting support when offered High emotional stress  and poor coping. pessimistic, defeated, despondent ri g i d yielding low ego strength multi-problem backgrounds more marital problems before cancer more regrets about the past taking a passive and inactive stance denying, avoiding and suppressing f a t a l i s t i c acceptance of the problem social withdrawal, alienation, minimal support from others 12 (e) effective problem resolution poor problem resolution, impulsive acting out, excessive use of drugs and alcohol, l i f e threats, s e l f -blame, blaming others While the Weisman and Worden studies note that a person's style (habitual preference) for coping and their particular resources (attitudes and s k i l l s ) may be f a i r l y constant over time, they conclude that effective coping efforts (strategies) can be taught, and that in improving and diversifying their coping strategies, cancer patients can lower their distress level and improve their problem resolution. Effective coping results in improving the quality of l i f e . Opportunity for change. There is age-old interest in understanding the person with the ill n e s s , reflected by Hippocrates' statement that he would prefer knowing what sort of person has a disease, to knowing what sort of disease a person has (Siegel, 1986). Implicit in this concern is the p o s s i b i l i t y for change. There are many c l i n i c a l studies which address the question of what sort of person contracts cancer. The following topics are reviewed: (a) cancer compared with other chronic disease, (b) cancer (malignant tumours) compared with benign disease, (c) long-term survivors compared with short-term survivors, and (d) the effectiveness of psychological intervention. 13 (a) Cancer and chronic disease. There is an impressive set of studies contrasting personality factors of cancer patients with people who have other chronic diseases (Grossarth-Maticek and colleagues, 1980a, 1980b, 1982a, 1982b, 1984a, 1984b, 1985a, 1985b). These studies used large randomized samples and a strong prospective research design. Psychological status was measured in the oldest, healthy person of either sex in every second household (N = 1,353) in an entire town (population of 14,000); these personality factors were correlated with the incidence of disease recorded ten years later. Results indicate a consistent personality pattern correlating cancer with chronic hopelessness and depression (at ,0.59), and rational, anti-emotional attitudes (0.51). These are high r e l i a b i l i t y coefficients for a prospective study. Grossarth-Maticek claims a 93% accuracy in predicting the incidence of cancer as distinguished from other internal diseases, solely on a blind analysis of psychosocial data (1980a). (b) Malignant and benign disease. In a study comparing psychological factors of breast cancer patients (N = 69) with those having benign tumours (N = 91), i t was determined that diagnosis based solely on psychological variables could be predicted with 72% accuracy (p < 0.001, Greer, 1979). Extreme suppression of anger was found to be characteristic of the breast cancer group, but not of the benign breast disease group, who acted as closely matched controls. 14 Another study matched women having cervical cancer to those having cervical neoplasia. In the cancer group a significantly low level of cooperative coping, and significantly high levels of pessimism, future despair and somatic anxiety were measured (Goodkin, Antoni, & Blaney, 1986). The authors concluded that stress and hopelessness are cancer-promoting. (c) Long-term survivors and short-term survivors. Other researchers have suggested that cancer patients who outlive their medically predicted l i f e expectancies demonstrate unique psychological functioning. A distinct profile of emotional functioning has emerged, although the picture is not always uniform in d e t a i l . A study of metastatic breast cancer patients indicated that long-term survivors appeared distressed, communicated their distress, and were more capable of externalizing conflicts and negative feelings (Derogatis, Abeloff, & Melisaratos, 1979). In contrast, short-term survivors exhibited a higher positive mood state. Another recent study of breast cancer patients supported the finding that longer survival was associated with open, mutual communication with significant others, strong emotional ties and a solid support network (Hislop, Waxier, Coldman, Elwood, & Kan, 1987). The findings of these breast cancer studies are also corroborated by studies of advanced metastatic disease, where diagnostic classes are mixed. In one study of terminal or widely metastatic disease, long-term survivors (defined as those liv i n g two years or more after being 15 diagnosed as incurable) were compared with short-term survivors (those who died within 13 months). In the long-terra survivors, a battery of standard psychodiagnostics revealed: a w i l l to live coupled with a sense of responsibility for their own healing and the belief that i t can occur; a refusal to give up or decompensate in the face of stress; a high degree of ego strength, self-sufficiency, f l e x i b i l i t y and nonconformity; and increased meaning in l i f e ; (Achterberg, Matthews-Simonton, & Simonton, 1977). Another study of terminal cancer patients indicated that long-term survivors had intimate relations with family and friends, asked for and received medical and emotional support, expressed anger and resentment in a way that did not alienate others, and accepted the seriousness of their illness without believing that death was inevitable (Weisman & Worden, 1975). Shorter survival was associated with longstanding deprivation, alienation, depression, destructive relationships, and an attitude of pessimistic fatalism and despondency. These results of a l l these studies support early c l i n i c a l observations of the typical cancer patient as passive, unexpressive and obliging, and tending to experience helplessness, hopelessness and deprjession (Blumberg, 1954; Leshan, 1959, 1966). (d) Psychological intervention. In summary, studies that have addressed the issue of psychological factors related to the incidence of cancer, indicate that there is a clear and f a i r l y consistent profile of the typical cancer patient. 16 Cancer patients are psychologically different from people with i other serious illnesses; they are also different from people who develop benign tumours; furthermore, the people who live longer than others with the same cancer are different as well. Research hypothesizes a "Type C" personality, which can be described as a person having a tendency toward emotional inhibition or repression, passivity, helplessness, hopelessness, depression and low self-esteem. Yet cancer patients who fare better than expected are sig n i f i c a n t l y more hopeful, optimistic and emotionally expressive than those who do poorly; have a strong desire to l i v e ; and take responsibility for their well-being. People can and do change, especially in the face of c r i s i s . People can be taught better s k i l l s of coping and adaptation. Illness can be an opportunity for change. This is the significance of a l l these studies which attempt to delineate a psychological and coping profile for cancer patients. Intervention studies which implement and assess the effectiveness of oncology support programmes take the current research one step further. Several studies provide evidence that structured support programmes do lower distress and improve problem resolution in cancer patients (Forester, Kornfeld, & Fleiss, 1985; Spiegel, Bloom, & Yalom, 1981; Worden & Weisman, 1984; Yalom & Yousssef, 1984). Coping s k i l l s training seems to be more effective than nondirective group sessions (Telch & Telch, 1985, 1986). Other studies suggest that the course of disease can be altered and lifespan prolonged through carefully designed psychotherapy programmes 17 (Grossarth-Maticek, Schmidt, Vetter, & Arndt, 1984; Leshan, 1989; Meares, 1980; Newton, 1982-1983; Simonton, Matthews-Simonton, & Sparks, 1980; Spiegel, 1978, 1981). Patients are encouraged to examine their expectations and beliefs, taught relaxation techniques, meditation, mental imagery, positive suggestion, problem-solving and communication s k i l l s . The question of whether psychological approaches can indeed extend l i f e has not yet been resolved. Studies addressing this issue have encountered much opposition from medical c i r c l e s , and can rightly be c r i t i c i z e d for methodological weaknesses and lack of proper controls. Yet the claim that health and healing can be promoted by one's own efforts is tenable in light of c l i n i c a l and psychobiological evidence. Psychological Disciplines  Existential-phenomenology Existential psychotherapy focuses on the ultimate concerns of human existence, which Yalom (1980) describes as death, freedom, isolation and meaninglessness. Existential therapy helps people confront their anxiety about death, take responsibility for their lives, and move ahead into f u l l and vibrant engagement in l i f e . Search for meaning. Viktor Frankl speaks eloquently of the central need of every human being to discover the meaning of one's l i f e (1984). Without discovering this meaning, l i f e is empty and without direction and purpose, and 18 people cannot commit themselves to any basic involvement with the world. Most people find meaning in something they do or they create, or in loving and being loved by another. People such as those with a life-threatening i l l n e s s , have yet another option. They can find meaning in their suffering, whether i t l i e s in cultivating an attitude of courage and acceptance, or becoming an inspiration for others. In a study of breast cancer patients, Campbell (1984) discovered a common pattern of meaning among women who had experienced a mastectomy. She proposed that by allowing and enduring suffering, people can discover a new meaning in l i f e . Her basic assumption is that illness takes people on a search for the meaning of their lives, and helps them discover and express that meaning. Campbell suggests that pain and suffering are integral to psychological growth, when the former state of a person's consciousness must die. She concludes that, "there is much more to illness than meaningless suffering, and much more to health than e f f i c i e n t functioning" (p. 230). Illness leads toward individuation and wholeness by showing a person the need for healing, and how the healing can happen. For mastectomy patients this healing involves: (a) discovering a new sense of purpose in l i f e ; (b) expressing this purpose by cla r i f y i n g p r i o r i t i e s and values, and celebrating l i f e "in the now"; (c) acquiring courage, gaining a sense of inner authority, taking responsibility for oneself and one's l i f e , and asserting one's freedom; 19 (d) knowing oneself as a unity of opposites, accepting previously disowned aspects of oneself, and discovering one's individuality and uniqueness; (e) having a sense of community with other cancer patients and with a l l humanity; and (f) experiencing the renewal and in d e s t r u c t i b i l i t y of the human s p i r i t . Self-discoverv. Lawrence LeShan has pioneered for 35 years in the f i e l d of mind-body cancer research. He has conducted studies with l i t e r a l l y thousands of cancer patients, and claims that the appropriate psychotherapy can increase l i f e expectancy. For the 20 years that he has been practising pyschotherapy with people who have cancer, he reports that 50% of his terminal patients are s t i l l alive (1989). According to LeShan, effective psychotherapy for people with a life-threatening disease must have an existential basis. LeShan makes four basic assumptions about healing: (a) each person has self-healing a b i l i t i e s , (b) a person must participate in their own healing, (c) a healing programme must be individualized, and (d) healing must occur on a l l le v e l s — p h y s i c a l , psychological and s p i r i t u a l . He also feels that the fight for l i f e in surviving cancer is a search for self and a search for meaning. His approach in psychotherapy 20 is helping cancer patients discover their own unique ways of being, relating and creating in the world. It is important to note that no other studies have replicated the kind of success that Leshan claims in combatting cancer through psychological intervention. Yet even modest gains in l i f e expectancy and the unquestionable improvement in the quality of l i f e would have a profound effect on cancer treatment. Martus (1985) conducted a phenomenological study of the healing process in 16 individuals who had healed or were dramatically healing from a major physical ailment such as cancer, tumours, kidney disease, high blood pressure or a r t h r i t i s . He focused on the role and significance of belief systems in f a c i l i t a t i n g healing. He suggests that a c r i s i s such as severe illness shatters a person's beliefs, and that new beliefs need to be discovered and affirmed. Martus concluded that believing in one's healing f a c i l i t a t e s the healing process. Believing is both the cause of change in the healing process, as well as the outcome. Believing and healing seem to be inseparable. Moreover, he suggests that "healing changes can be just on the physical level, but more often that not, involve changes on the emotional, s p i r i t u a l and behavioral levels" (p. 92). Thus, concomitant with healing is an increased awareness of self and harmony within oneself (body, mind and s p i r i t ) , as well as increased harmony in relation to others and the world. His findings support other studies that suggest that the healing process begins with an orientaion toward believing, and as healing progresses, there is an ongoing exploration and dialogue with 21 one's b e l i e f s . Pennington's (1982) study e l a b o r a t e d upon the r o l e of b e l i e f s and values i n the h e a l i n g process. She conducted a phenomenological study of s i x people who had s u r v i v e d two years beyond a t e r m i n a l d i a g n o s i s . Two of the s u b j e c t s were Hans Selye and Gregory Bateson. The study exp l o r e d the meaning of l i v i n g w i t h a t e r m i n a l d i a g n o s i s . Pennington concluded t h a t people are a b l e to e x e r t a power over t h e i r h e a l i n g , and i n t h i s search f o r h e a l t h , people i n i t i a t e a search f o r s e l f . She suggests t h a t "there are p s y c h o l o g i c a l i n f l u e n c e s which t r i g g e r the r e s t o r a t i v e mechanisms of the m i n d - b o d y - s p i r i t r e s u l t i n g i n longer l i f e , i n creased q u a l i t y of l i v i n g , and apparent recovery" (p. 214). These p s y c h o l o g i c a l i n f l u e n c e s are woven i n t o a theory of "personal agency". This theory o u t l i n e s seven stages i n h e a l i n g : (a) awareness of s e l f ; (b) meaning of l i f e and death; (c) c h o i c e ; (d) w i l l t o l i v e (transformed i n t o l i f e - a f f i r m i n g a c t i o n ) ; (e) r e s p o n s i b i l i t y f o r becoming h e a l t h i e r ; ( f ) s t r a t e g i e s to manifest the d e c i s i o n s ; and (g) change i n r e l a t i o n s h i p s , a t t i t u d e s , v a l u e s , b e l i e f s and l i f e s t y l e s . Mastery. In Cunningham's (1988) thorough review of p s y c h o s o c i a l i n t e r v e n t i o n for cancer p a t i e n t s , he notes the e v o l u t i o n of programmes through 22 various stages, notably: neglect up to the six t i e s ; systematic support in the seventies; coping s k i l l s training in the eighties; and the pos s i b i l i t y in the future of training in s k i l l s of mastery. Cunningham makes the plea that we can do far more than teach cancer patients to cope effectively with their i l l n e s s . We need to teach people to fight actively against their disease. This would include teaching not only basic stress management, but helping i n s t i l l in people the conviction that they are the masters of their own fate. This requires people to develop a sense of responsibility for their health and healing; to change thought patterns, attitudes and actions that are counterproductive to healing and happiness; to explore the meaning of one's il l n e s s ; and to define a clear purpose in l i f e aided by l i f e review, meditation and discussion. Siebert (1980, 1983, 1985) supports this concept of mastery with his studies in synergy. He describes the need for synergy as a basic motivational force that takes one step beyond self-actualization. Central to the synergistic personality is the integration of paradoxical personality t r a i t s . A synergistic person can be described as a unity of opposites: tough and sensitive, cooperative and rebellious, self-centred and unselfish, childlike yet mature. Siebert's development of a synergy model dates back to his interest of 37 years in the study of survivors. He defines the survivor personality as someone who has: (a) survived a major c r i s i s ; 23 (b) surmounted that c r i s i s through personal effort; (c) emerged from the experience with previously unknown strengths and a b i l i t i e s ; and (d) found, retrospectively, value in the experience. This operational definition of a survivor gives meaning to the issue of survivorship. There has been a corresponding s h i f t in the medical model to regard the cancer survivor as more than someone li v i n g i with a diagnosis of cancer. The National Coalition for Cancer Survivorship suggests that "survivors share a common, transforming experience that has impacted their lives with new challenges and enhanced potentials" (Staff, 1987, p. 7). In attributing certain states of mind and purposeful behaviour to survivorship, Siebert is suggesting that there is something that can be learned from crises. Siebert's observation of survivors revealed that they are people with synergistic personalities. Survivors are guided by the primary motive of needing to have things turn out well for themselves and others, a motivation he describes as the "competence imperative". Siebert concludes that survival is not a random event. There is evidence of a survivor profile, and people can learn how be to survivors. These conclusions have significance for people with life-threatening disease. Studies like those of Cunningham and Siebert make important contributions to the f i e l d of personology. Personology is the phenomenological study of people, which focuses in the detection of 24 common patterns of functioning (Mages & Mendelsohn, 1979). Cunningham and Siebert suggest a level of functioning that surpasses that of even coping well with c r i s i s : in learning to master c r i s i s a person discovers what i t is to be f u l l y human. Jungian Psychology The core of Jungian psychology is the healing of the s p l i t between consciousness and unconsciousness, by creating a dialogue through the use of dreams, fantasies, body language, art, myth and r i t u a l . By bringing into awareness what is hidden and undiscovered, a person can make contact with a creative inner source which then guides them on the path to become a unique and individuated person. Activating the inner healer. Some researchers contend that healing occurs when the innate healing capacity is activated. This concept is not a new one, but a h i s t o r i c a l belief dating back to the ancient Greeks. "Vis medicatrix naturae" is the power of recovery inherent in an organism. Guggenbuhl-Craig expresses i t this way: "The sick man seeks an external healer, but at the same time the intra-psychic healer is activated. We often refer to this intrapsychic healer in the i l l as the 'healing factor 1. Neither wounds nor diseases can heal without the curative action of the inner healer" (1971, p. 90). What exactly is meant by the inner healer is not made e x p l i c i t . Is i t a creative image or symbol that arises in the mind, and that is 25 activated by belief and hope? Proponents of this persuasion do make i t clear, however, that individuals must develop a very personal relationship with their i l l n e s s : they must have the conviction that their own a b i l i t i e s to heal are a great a l l y in the struggle. It is assumed that people need to take responsibility for assisting the healing process in order for healing to occur. Affirming one's destiny. The notion that healing comes about through a unitive, higher order than psyche or soma is a notion germane to Jungian psychologists (Meier, 1963). Thus, the task in healing is to contact and activate the numinous (divine or spiritual) powers within ourselves (Hyman, 1977). By activating these s p i r i t u a l , healing qualities a person is guided toward f u l f i l l i n g their destiny. Carl Jung recognized the potential of illness after his own health struggles: "It was only after the illness that I understood how important i t is to affirm one's own destiny" (1961, p. 297). Furthermore, he suggests that "man needs his d i f f i c u l t i e s . They are necessary for health" (1960, para. 73). One Jungian analyst suggests that cancer "signifies something wrong in one's relation to l i f e , and so cancer is both a warning and an opportunity to seek out the paths of unlived l i f e " (Lockhart, 1977). He considers cancer to be a metaphor for l i f e unlived, and something of oneself that is denied, undernourished and not permitted to grow. In responding to illness by beginning an inner growth process, a person 26 awakens the previously denied meaning and purpose of their destiny. Whether one discovers (Frankl), creates (Campbell) or affirms (Jung) the meaning of one's l i f e through illness is a semantic question. What is important is that il l n e s s is perceived as a rich source of renewal and a confirmation of one's path. Becoming whole. [ Other Jungians describe illness as holding the potential for becoming whole. John Sanford (1977) provides a seminal discussion on this' theme. His work draws from Jungian and Christian influences. Sanford f i r s t looks to the origins of the word "health" to find that i t means wholeness. To be healthy is to be whole; a whole person is a complete and unique person. This movement toward wholeness is called individuation. It is a life-long and never-ending process, by which people seek to realize their potential. Sanford suggests that, "All: creatures exist for a purpose. Even an ant knows what that purpose i s . . . Only human beings have come to a point where they no longer know why they exist" (p. 17). Yet that purpose is there, hidden deep within each one of us, and c a l l i n g us to search for the meaning and pattern of our l i v e s . This process of becoming whole, however, is a dark, dangerous, painful passage that most of us would prefer to avoid. It seems, then, that suffering is inherent in becoming whole. It is as i f our lives must brutally knock up against something, such as a life-and-death c r i s i s , in order for us to take the steps toward individuation and wholeness. According to Sanford's thesis, the task of 27 individuation for people with cancer takes them on the s p i r i t u a l journey of self-healing. Marion Woodman, in her (1985) discourse on transformation, reflects that, " i t takes a holocaust, outer or inner, to help us to realize what is really essential in l i f e " (p. 31). She questions why people are so afraid of change. "Why do we lose our childhood faith in growing? Why do we cling to old attachments instead of submitting ourselves to new po s s i b i l i t i e s ? " (p. 15). Woodman suggests that people often lack the confidence, courage, w i l l and self-assurance required for dramatic change. Puthermore, there is an absence of cultural maps and rites of passage to guide people along the way. As a result, people feel trapped, weary, and bored. This is a state described by Woodman as "perpetual chrysalis". The chrysalis is essential i f we are to find ourselves, and find ourselves we must. Yet we need to emerge from the chrysalis, just as the caterpillar does to become a butterfly. This is the process of psychological transformation. It is a search for one's essence. In the struggle to become conscious, Woodman offers the image of the "pregnant virgin"—one who is forever pregnant and open to po s s i b i l i t i e s and new l i f e . As a summary of this discussion of wholeness, as i t refers to transformation and healing, Carlson and Shield (1989) state that, "Healing is a process of reconnecting with that part of us that always was, always i s , and always w i l l be.... The golden thread of healing is a process of personal transformation, a process of becoming one with ourselves" (p. 187). The implication for cancer patients is that their 28 struggle for survival can be a holocaust which precipitates growth, i healing and wholeness. Neo-Junqian Psychology  Self-understanding. One of the exciting developments in Jungian psychology is process-oriented psychology (POP) or Dreambody work, founded by Arnold Mindell (1982, 1985a, 1985b, 1987). The primary focus of process psychology is the integration of mind and body by elevating the body's role in creating awareness and leading us toward wholeness. Mindell suggests that i l l n e s s , body symptoms and accidents are not an outer problem but something that the individual is trying to express. Body symptoms are considered analogous to dreams—they have a reason for existing, an inner meaning, and a mysterious way of communicating. In letting the symptoms of the body speak for themselves, a rich potential for s e l f -understanding is available. Instead of considering disease as pathological and destructive, Mindell suggests that a l l body states be regarded as meaningful and purposive. The essence of i l l n e s s , according to Mindell, l i e s in i t s request for attention and change. Thus, "the s p i r i t of the disease appears as the s p i r i t and meaning behind l i f e " (1982, p.90). Mindell makes an interesting hypothesis about chronic il l n e s s , borne out by his c l i n i c a l experience in working with the i l l , the seriously i l l and the dying. "A chronic disease is often a lifelong problem, a part of someone's individuation process. I don't believe that a person actually 29 creates disease, but that his soul is expressing an important message to him through the disease" (1985b, p. 13). He voices the theme, echoed by other Jungian therapists, that pain and suffering are functional: "People have a huge need to feel their pain. Very often pain is the beginning of a great deal of awareness" (1985b, p. 37). Goodbread, another process-oriented therapist, agrees. He suggests that i t is those things which most disturb us and create suffering which also have the greatest potential for enriching and transforming our lives (1987). Furthermore, Mindell adds that body problems may reflect family disturbances and even collective problems of the world (1985a, 1985b, 1987). He considers cancer to be not just a personal problem, but a world process. The task of cancer patients, then, is to bring to the world the learning which has taken place during their healing and transformation process. Transpersonal Psychology Like Jungian psychology, transpersonal psychology reveals a deeper, s p i r i t u a l aspect of ourselves, and takes another step in emphasizing that part as something that shows us our oneness and our common connection with a larger re a l i t y . Transformation is a central concern of transpersonal psychologists, who often liken the process to a personal journey. 30 Hero's journey. The great mythologist, Joseph Campbell, has popularized the journey of transformation in his description of the hero's myth (1968). The hero is a symbol of the s p i r i t u a l force that carries our destiny. In his depiction of the hero's journey, Campbell presents a story of psychological significance. The journey expresses the fears, desires and tensions that motivate human behaviour. He outlines three stages of the journey: (a) departure, (b) i n i t i a t i o n , and (c) return. In the f i r s t stage, the hero departs from everyday l i f e . There is something in his l i f e which must be faced. Perhaps the c a l l comes from a deep sense of meaninglessness: what had meaning before no longer has meaning. The hero is summoned by destiny to enter the darkness and the unknown. The second stage, i n i t i a t i o n , describes this journey into the darkness. There are many t r i a l s and obstacles encountered along the way, which can only be overcome with the assistance of a s p i r i t u a l power that is greater than oneself, and inexhaustible. In winning the battle, the hero is purified. He now has the vision of God. He perceives the unity of a l l things. This carries him beyond the duality of opposites. In the third stage, return, the hero must reintegrate with society. This return is indispensable for the circulation of sp i r i t u a l energy and 31 l i f e force back into the world. The hero becomes a teacher, sharing what he has learned from his adventure. This model of encountering obtacles, winning a battle and being strengthened by i t may well provide meaning for the process of recovering from life-threatening cancer. Spiritual emergence. Stanislav Grof is a psychiatrist who has extensive c l i n i c a l background supporting dying cancer patients with psychedelic-assisted death-rebirth experiences. He has developed the model of a death-rebirth process that is a transformational journey similar to Campbell's journey of the hero. The death-rebirth process also resembles shamanic i n i t i a t i o n , cultural rites of passage, and the stages of biological birth (Grof & Grof, 1980; Grof & Halifax, 1977). This is a journey that f a c i l i t a t e s the emergence of the s p i r i t . Four stages are proposed: (a) engulfment, (b) no exit, (c) death-rebirth struggle, and (d) death and rebirth. In the f i r s t stage, engulfment, a person experiences an overwhelming feeling of anxiety and the awareness of some v i t a l threat. Grof compares this stage to the onset of biological delivery, and the b i b l i c a l story of expulsion from the Garden of Eden. The second stage, no exit, is the experience of the world as dark 32 and menacing, where l i f e lacks purpose, and suffering is experienced as eternal and inescapable. This resembles first-stage birth, and the b i b l i c a l descent into h e l l . The next stage describes the t i t a n i c death-rebirth struggle. Here struggle becomes meaningful, whereas earlier i t f e l t hopeless. This is a struggle for survival, and may be experienced as the struggle between good and e v i l , pleasure and pain, joy and suffering. A person learns to withstand the forces that threaten to crush and suffocate and drown. An analogy is made here with second-stage birth, and Purgatory or the Last Judgement. Death and rebirth mark the end of the journey, a stage comparable to third-stage birth and the Resurrection. A person experiences complete annihilation on a l l levels: physical, emotional and mental. As the ego dies, one is s p i r i t u a l l y reborn. The world is experienced as sacred. A person feels bathed in love, joy, ineffable b l i s s , and feels at one with a l l things. Grof proposes that illness can be given the life-transforming context of s p i r i t u a l rebirth. He makes the argument that we need to provide cultural maps of growth and change to help guide people of the modern age through chaotic and confusing times. To this end, he redefines life-threatening crises as " s p i r i t u a l emergencies", and with Christina Grof, has developed the Spiritual Emergence Network, an international organization providing support for individuals undergoing transformative crises (Grof & Grof, 1989). 33 Rite of passage. In Grof's account of the transformative death-rebirth process, he makes reference to the cl a s s i c a l study of rites of passage by Arnold van Gennep (1961). This anthropological model has si m i l a r i t i e s to the hero's journey. Three stages are outlined: (a) separation, (b) transition, and (c) incorporation. The r i t e of passage is f i r s t marked by separation of the individual from her or his community. The person experiences loneliness, isolation and fear of the unexpected. Yet with the reassurance that this strange new territory has been crossed before by many others, the individual surrenders to the unknown. In the stage of transition a person suffers total annihilation, and learns through profound experience that one can emerge renewed and reborn. The individual is integrated, a changed person, back into the community, in the f i n a l stage of incorporation. These three descriptions of the journey—the hero's journey, the death-rebirth process, and the r i t e of passage—have diverse origins in mythology, psychiatry and anthropology, and yet are remarkably similar in d e t a i l . They indicate several things: profound change involves a journey; the journey is perilous, and requires that fears be courageously faced; old ways of being must die; and as people are reborn 34 into new l i f e , they make a positive contribution to the world. Spiritual Disciplines Amerindian Philosophy Our native American heritage is one example of a sp i r i t u a l discipline which addresses the issue of transformation. Amerindian philosophy is deeply rooted in nature and a reverance for a l l l i f e . The Earth is considered to be our Mother and our most intimate relation, for without the earth, we cannot l i v e . The focus of native teachings is how to live in harmony with the Earth and a l l things of the Earth. Shamanistic i n i t i a t i o n . The literature of the native peoples of North America is rich with accounts of great teachers and healers. The writings of Carlos Castaneda about the Meso-American Indian shaman, don Juan, offer s p i r i t u a l teachings embedded in our North American heritage. Whether these stories are an accurate anthropological account or f i c t i o n is not important: the relevant point here is that they depict a path of knowledge that leads to healing, transformation and s p i r i t u a l renewal. The Jungian psychologist, Donald Lee Williams, presents a rich psychological analysis of the Castaneda adventures (1981). The don Juan stories describe an i n i t i a t i o n into shamanism. These stories use the analogy of a journey, and have an uncommon similarity to the transpersonal journeys outlined earlier. Traditionally, what c a l l s a person to the path of knowledge is an 35 unusual sickness that brings on potent dreams and visions. If the individual chooses to answer the c a l l , this may take them on a path of personal healing and transformation, and may draw them to the work of healing or shamanism. Shamans are healers who specialize in the influence of the mind on the body, and have the a b i l i t y of "travelling between the worlds" for information (Elkin, 1977, pp. 77-78). The world of the unconscious, the non-rational and the unknown hold information for healing. The thesis of Williams 1 analysis is that the pursuit of self-knowledge connects a person to their source of healing. He presents three phases of this journey, expressed as an evolution of the "average man" to the: (a) hunter, (b) warrior, and (c) seer. The "average man" according to don Juan, the native Indian shaman/teacher, lacks wholeness. He does not pay attention to his unconscious, lives by mechanical routines, and lacks a sense of purpose. Illness, intense suffering, and the vision of another way c a l l a person to the path of knowledge. The path takes a person on a search for her or his essence. F i r s t one learns the ways of a hunter. Hunting, psychologically, is a search for one's personal myth or meaning. The hunter pays attention to the unconscious, learning how to stalk the information that 36 is there, yet hidden. "Through intense inner experience and reflection the individual, like the hunter...comes to know his or her unique path or myth" (p.33). Williams adds that i t is essential to honour what we learn about our path by l i v i n g i t . This is an interesting point in relation to cancer patients. If there is a relationship (as many suggest) between health and l i v i n g one's path, is there also a reciprocal relationship between ill n e s s , recurrence of cancer, and separating oneself from the path? In the second part of the journey, a person learns the ways of the warrior. The warrior pursues the unconscious, in that he deliberately turns to the darkness and the unknown of the inner and outer worlds for direction and guidance. A warrior's attitude is cruc i a l : he must develop courage and the willingness to face his fears. "The warrior's attitude is that the worst has already happened, he considers that he is already dead and thus has nothing to lose.... The warrior may deliberately welcome the worst in order to know its secret. The worst may even turn out to be our best chance" (p. 65). The way of the warrior is the way to individuation, where we learn to "trust and follow our own unique experience regardless of whether or not i t matches the general trend" (p. 57). Finally, one turns to the way of the seer. A seer lives by the direction of the unconscious, directs his l i f e by what he sees, and understands things as they really are. In this way the seer reconnects himself to a larger re a l i t y . The seer must also assume responsibility for his inner knowledge, and find the means of sharing what he knows 37 with others in becoming a teacher, healer or shaman. The significance of the shaman's journey is that i t shows us the ways in which we have become disconnected from ourselves and the world, and suggests ways to bring ourselves back into alignment. Buddhist Philosophy Buddhist philosophy focuses on healing the s p l i t between the whole person and the environment, to reveal an individual's connection with the entire universe. Buddhism aims to develop a level of awareness called "unity consciousness" (Wilber, 1979). This is not the exclusive domain of Buddhism, but is the goal of most world religions. Thus, Christianity, Judaism, Islam, Hinduism, Taosim and Sufism could a l l be explored for the ways in which they address the issue of transformation. Archetypal journey. The story of the l i f e of the Buddha, like that of Christ, symbolizes the universal principles that give meaning and guidance to human l i f e . Goldstein and Kornfield, two Buddhist scholars and meditation teachers, interpret the c l a s s i c a l story of the Buddha's l i f e as an archetypal journey, similar to that of the hero (1987). They present the l i f e of the Buddha as a model of transformation for everyone. There are four stages in the archetypal journey: (a) the c a l l to destiny, (b) the great renunciation, 38 (c) the great struggle, and (d) the great awakening. The c a l l to destiny is the c a l l to awaken. Something inside us whispers that l i f e can be different from the way we live i t . For the Buddha, i t was the profound awareness of how our lives are limited and conditioned by suffering, illness and death—that thrust him on the path of self-inquiry. The Buddha was a prince in his early years and had to leave the protective l i f e of the palace in order to realize himself. The second stage of the journey is the great renunciation, when a person sees new p o s s i b i l i t i e s and begins to change habitual ways of l i v i n g . The story of the Buddha decribes how he became a monk and undertook different practices through which he might attain true freedom. The third stage is the great struggle. People on the path of transformation must confront their fears and struggle with the forces of e v i l or delusion. The account of the Buddha's battle with these worldly forces is very similar to the story of the temptations of Christ. The completion of the journey is the great awakening. A person recognizes the causes of suffering, sees that there is an end to this unhappiness, and strives to live a l i f e that w i l l bring true contentment and peace of mind. According to the Buddha, to be awake is to be aware, "to develop freedom within oneself, compassion for the suffering of the world, and an active sense of service for the welfare of others" (p.84). Thus, not only can we look to the Buddha to cultivate the qualities of loving-kindness, generosity, wisdom, tr a n q u i l l i t y and equanimity, but 39 our lives must also be directed toward benefiting and inspiring others. Manifesting the divine. Karlfried von Durckheim provides another Buddhist model of the journey of transformation (1980). His thesis is that wholeness and health depend on f u l f i l l i n g one's inner mission and l i v i n g from one's essence. To live this way is to manifest the divine in the world. Like many others, Durckheim believes that only suffering can motivate us to take this path of transformation. "Only that pain which arises from the depths of himself can f i n a l l y compell a man to look inwards and bring him to the realization that he has lost touch with his own essential inner being" (p. 15). Five steps of transformation are proposed by Durckheim: (a) c r i t i c a l awareness, (b) letting go, (c) experience of oneness, (d) rebirth, and (e) daily practice. In the f i r s t step, c r i t i c a l awareness, we recognize what i t is that stands in the way of true self-realization. We must understand how and in what circumstances we f a i l to express our essential being. According to Durckheim, to be rightly centred in our essential being is to be guided and to be given strength and purpose from our centre, so that we can learn to live at peace with a l l the ups and downs of l i f e . 40 The second step is to let go of the attitudes and values that stand in the way of inward knowing. "Letting go requires that we give up any idea that l i f e must be what we expect and we desire" (p. 71). Durckheim describes the experience of oneness as "Union with the Ground of Being". In this stage we experience the feeling of being sustained, supported, nourished and renewed, no matter what the d i f f i c u l t y — j u s t as the ground and as our mothers support and nourish us. In rebirth or "new-becoming" a person experiences the reversal of the old l i f e , a melting of the world-ego, and a new birth. Even at this point in the journey, an individual must have commitment and tenacious w i l l to stay on the path. The f i f t h stage is described as the daily practices which confirm the attitude of letting go, and give us the experience of oneness and renewal. This is similar to the f i n a l stage of the other journeys described, where a person confirms their transformative experience by sharing their knowledge with the world. Summary of the transformative journey. A description of the transformative journey as described in the six models reviewed earlier is summarized in three stages, as follows: The beginning of the transformative journey is marked by a c a l l to awaken and to change. It is a c a l l that arises from our pain, our suffering, the lack of purpose and s p i r i t u a l guidance in our lives, and the deeply f e l t need to live differently. A person clearly recognizes 41 what must be changed, and takes up the c a l l by making the i n n e r d e c i s i o n t o change. T h i s p r o p e l s an i n d i v i d u a l on a s e a r c h f o r a p e r s o n a l myth, meaning or e s s e n c e . As one begins the s e a r c h , the t h r e a t of death or a n n i h i l a t i o n i s e x p e r i e n c e d v e r y d r a m a t i c a l l y . The middle of the j o u r n e y d e s c r i b e s the g r e a t s t r u g g l e i n l e t t i n g go of o l d ways. I n i t i a l l y , the fear of l e t t i n g go c r e a t e s an overwhelming sense of h e l p l e s s n e s s and h o p e l e s s n e s s . B u t , as one d e v e l o p s c o u r a g e , the w i l l i n g n e s s t o face f e a r s , and the b e l i e f t h a t d e a t h i s an a l l y , one i s a b l e to commit o n e s e l f to the p a t h . Many o b s t a c l e s and t r i a l s a r e encountered and overcome, and a person i s r e q u i r e d to shed the ways t h a t i n h i b i t f u l l human b e i n g . The process of r e b i r t h i s d e s c r i b e d i n the end of the s t o r y . A person e x p e r i e n c e s p u r p o s i v e n e s s , l o v e , and u n i t y w i t h a l l t h i n g s — t h i s i s a s t a t e of wholeness , and embodies the v i s i o n of God. A person e x p r e s s e s what t h e y have l e a r n e d through d a i l y p r a c t i c e s and a c t i v i t i e s , and t h r o u g h the a t t i t u d e s of compass ion, g e n e r o s i t y , wisdom and p e a c e f u l n e s s . The c y c l e of i n d i v i d u a l t r a n s f o r m a t i o n regenerates i t s e l f as a person becomes a t e a c h e r or a h e a l e r , s h a r i n g l e a r n i n g w i t h o t h e r s and c o n t r i b u t i n g to the w e l f a r e of a l l . S p i r i t u a l M e d i c i n e There i s a new wave of medic ine t h a t a t tempts t o understand h e a l t h and h e a l i n g i n the c o n t e x t of a u n i t i v e , s p i r i t u a l f o r c e . T h i s a r e a of r e s e a r c h has l a r g e l y been promoted by m e d i c a l d o c t o r s l o o k i n g f o r new o p t i o n s i n t h e i r t reatment of i l l n e s s . T h i s approach marks an 42 evolution: from physical medicine to mind-body medicine to s p i r i t u a l medicine. Awakening. Brugh Joy (1979) suggests that transformation is implicit in l i f e -threatening disease. The obvious transformation would be physical death, yet there is another p o s s i b i l i t y — t h a t of psychological transformation. True psychological transformation demands psychological death and radical personal change. Joy proposes: If that transformation is chosen and i f i t is to be effective, the change in the patient's attitudes and l i f e patterning must be as complete as would transpire through death. Halfway measures won't do i t ; there is no room for compromise. Sweeping changes are required. Marshaling the courage and c l a r i t y to make the necessary changes is the real challenge, (p. 210) In order to change, a person must f i r s t conceive that there is more to experience in any given moment, and that each moment holds limitless potential. The task is then to realize this p o s s i b i l i t y . This process is described by Joy as "discovering the intention of one's soul". The central tenet of his research is that transformation brings healing, and that both of these are essential s p i r i t u a l tasks. Stephen Levine, a consultant/guide for the dying, eloquently addresses the attitude of someone going through a transformational healing process (1987). He suggests that i t is primarily our attitudes and beliefs about how we should live (and how we should die) that 43 contribute to our pain and suffering. He suggests that we change our attitude toward illness to perceive i t as a teaching rather than a curse. By learning to accept and allow our pain and suffering, we begin the process of healing. Developing this attitude of openness and acceptance creates the space that is crucial for healing to occur. According to Levine, "healing is the growth that each person seeks" (p. 4). Healing ca l l s us to grow, participate deeply in l i f e , and open our hearts to the suffering that is inescapable. This is the process of awakening that transforms our lives. Levine makes the plea that we begin this process now. It is our task as humans to awaken and become whole. Don't wait to live u n t i l you have been told that death is only six months away. This is not work to be done at some later date when a frightening diagnosis or prognosis is received. This is the healing available to us this very instant. Entering our heart is a process of letting go of our suffering, (pp. 246-247) This recommendation is intended for a l l of us, and reinforces the need expressed in this study to learn from those who are transformed by a serious i l l n e s s . According to Levine, in healing, we learn to cultivate the attitudes of self-love and self-forgiveness, and learn to let go of our anger, grief and feelings of separateness from others. The transformation comes about as we awaken to our wholeness. Levine makes an important statement about healing not being 44 confined to the body. Healing is not so much a matter of removing illness as i t is the process of healing the mind and s p i r i t , so that we can live f u l l y and die in peace. This position warns us not to make false assumptions about those who li v e and those who die. "Ve saw no less of a healing balance among those who moved peacefully through death than we did among those whose bodies re-established a certain degree of wellness" (p. 28). Joy and Levine assume that to be transformed by illness requires more than just surviving i t . Transformation c a l l s for a radical change in attitudes concerning how one chooses to l i v e . Thus, the exceptional cancer patient is not someone who has simply lived longer than expected, but a person who has been renewed and made whole by the i l l n e s s . Call for aliveness. Richard Moss provides another description of the transformation process, notable for i t s richness in detail (1981, 1985, 1986). His thesis is that medical c r i s i s is an opportunity for personal growth and holds the potential for greater aliveness. How does illness constitute such an opportunity? According to Moss, i t demands that we let go of self-images and old identity; i t requires that we remain unconditionally open to the moment; i t forces us to surrender to no longer being in control; i t shows us the places in which we contract from f u l l aliveness. Serious illness demands that we change in a radical manner, not simply reshuffling our ways of thinking or altering our environment and l i f e s t y l e . 45 , Moss proposes that transformation is a fundamental change in consciousness and an invitation to radical aliveness. "Radical change demands that we must die in order to be reborn" (1986, p. 78). Some interesting hypotheses are posed by Moss about the origins of cancer. He suggests that cancer is a high-energy system seeking to be uti l i z e d for creative purposes. When i t is not transformed psychologically i t becomes morbid. According to Moss, the existing, epidemic of cancer and other stress-related and degenerative diseases is an indication of the changes that need to take place in the collective human consciousness. This is the same hypothesis voiced by Mindell and many others. Whether or not i t is true remains to be confirmed by experience. Elisabeth Kubler-Ross is a pioneer in the f i e l d of death, dying and transition. She has attempted to change the understanding of death, from an event to be feared, to an opportunity for growth and aliveness (1969, 1975, 1978, 1981, 1982). According to Kubler-Ross, in accepting our own impending death, people are taken on a guest to discover what is meaningful in l i f e . In coming to terms with death, we are compelled to question our values and continually re-evaluate how we elect to l i v e . Thus, facing the fear of death holds the potential for human transformation. Kubler-Ross believes that much of our l i f e energy is tied to the supression of anger, resentment, guilt or grief work. She suggests that people need to express and discharge negative and destructive emotions in order to experience wholeness and aliveness. As the dam of repressed energy is let loose, people are then able to 46 experience self-love, connectedness and compassion for others, and an improved quality of l i f e . Recovering the soul. Larry Dossey is a forerunner in the f i e l d of mind-body medicine. His present focus is on the development of a new s c i e n t i f i c model for medicine that addresses our s p i r i t u a l nature. Dossey suggests that a c r i t i c a l illness is often the key to c r y s t a l l i z i n g the awareness of our unity with one another. Severe suffering and pain can break through our limited personal r e a l i t y and the sense that we are separate from others. The function of such a c r i s i s , then, is to awaken unity consciousness. Dossey refers to the wealth of controlled replicable studies which establish that the mind behaves no n l o c a l l y — i n essence, the mind is a f i e l d , and we are a l l connected in that f i e l d (1989). Small mind is a part of Universal mind. It is this concept of nonlocality which explains such phenomena as faith healing, healing by thought or prayer, spontaneous cure, the placebo effect, communicating through telepathy, and so on. A model of nonlocal medicine is proposed by Dossey, based on the premise that "minds are spread through space and time; are omnipresent, i n f i n i t e and immortal; and are ultimately one" (p. 265). His description of "mind" is identical to a description of s p i r i t . Dossey1s research has broad and excitng implications: 47 (a) Since we are a l l connected through mind/spirit, our hopes and prayers and efforts directed towards the healing of others has a definite, positive (and measurable) effect. (b) Health and healing are not just a personal but a collective a f f a i r . (c) There are global implications for doing one's healing. Dossey quotes James Hillman, who says, "Any alteration in the human psyche resonates with a change in the psyche of the world" (1989, p. 11). Dossey suggests that the fate of the Earth could depend on our collective efforts, and that i t is essential to develop a sacred attitude for the Earth and a l l things in i t . The human body and the body of the earth are inseparable. This is a compelling argument which could benefit by drawing on people's experience. Robert Stein (1976) adds to this discussion that a l l diseases (and we might also think of the present health of the earth) are a reflection of humanity's alienation from our s p i r i t u a l roots. Like Dossey, he ca l l s for a recovery of the soul in relation to health and well-being. He proposes that the task of the soul is to discover i t s e l f , and to give purpose and meaning to human ac t i v i t y . "The mind can discover what is needed only by listening to and reflecting upon the subtle movements of the soul as i t expresses i t s e l f in bodily sensations, feelings, emotions, images, ideas and dreams" (p.74). Thus, ill n e s s , and especially life-threatening i l l n e s s , is ideal terrain for self-realization, as i t reveals the soul, and the purpose of our existence. 48 Manifesting love. Bernie Siegel is attempting to dramatically change the understanding of our capacity for self-healing, in his work with cancer patients. His thesis is that love is the bridge for healing. "I am convinced that unconditional love is the most powerful known stimulant of the immune system" (1986, p. 181). These are influential words, coming from a surgeon and cancer spe c i a l i s t . The popular Beatles' song, " A l l You Need Is Love", perhaps contains a truth that takes us beyond the appealing l y r i c s . Siegel adds, "I feel that a l l disease is ultimately related to a lack of love, or a love that is only conditional, for the exhaustion and depression of the immune system thus created, leads to vulnerability. I feel that a l l healing is related to the a b i l i t y to give and accept unconditional love" (p. 180). Thus, one's attitude towards oneself, in Siegel's understanding, is the most important factor in healing and staying well. For healing to occur, we need to accept ourselves, stop c r i t i c i z i n g and judging ourselves, and be compassionate with ourselves. The importance of self-love, advocated by Siegel, is supported by the description others give of self-acceptance, discovering our soul or essence, manifesting the divine, awakening and becoming whole. These themes are integral to the process of healing and transformation. Summary and Critique Physical Disciplines  Assumptions. 1. The mind has a powerful role in activating the healing of the 49 body!. 2 . A person's hopes, beliefs, will, expectations and intentions a l l have a dramatic impact on the course of a disease and the recovery from illness. Thus, a person's optimism, positive attitude, will to live, belief in recovery, and determination are essential to the healing process. 3 . All efforts that reinforce a positive belief system in the i l l person will assist healing. 4. There is a meaningful discourse between the mind and the body. 5. The body communicates to a person what can be changed to facilitate healing. 6. People must become active, responsible participants in their own health and healing by responding to the communication of the body about changes that need to occur. 7. Illness, especially life-threatening illness, is stressful. 8 . Many people need assistance in coping with the stress of l i f e -threatening illness. 9. People have certain attitudes, styles and strategies for managing problems that may increase their stress levels and predispose them, to illness. In facing difficulty, a person who suppresses feelings and conflicts, becomes passive and pessimistic, and feels helpless and hopeless, will experience greater stress, and may become predisposed to cancer. 10. People can learn to change their attitudes and habitual ways 50 of approaching and managing problems. 11. Programmes can be designed to teach people effective coping strategies, better communication s k i l l s , and how to take an active role in combatting stress. 12. Effective coping improves the quality of l i f e , makes one healthier, and may assist a person in surviving a life-threatening disease. Criticisms. Mind-body research has made a tremendous contribution to our understanding of the significance of the w i l l to live and a positive belief system, in f a c i l i t a t i n g healing. Yet behavioural medicine does not attempt to understand how this healing occurs. Physical disciplines do not address the whole person, thus healing is understood simply as the return of physical, mental and social well-being. The concept of a life-transforming process that takes place as healing occurs is foreign to behavioural medicine. Behavioural medicine clearly demonstrates that people can be taught to change their thoughts and attitudes in order to improve their health. Yet i t is uncertain whether a change in thought and attitude is sufficient for healing to occur. Another question that remains unanswered is whether essential attitudes such as the w i l l to li v e can even be taught. Can healing be taught? Siebert, an expert on survivorship, suggests that "the survivor personality cannot be taught but i t can be learned" (1985, p.17). We can learn about survivorship by 51 being a survivor and by learning from survivors. This requires that we understand their experience as they lived i t . Psychological Disciplines  Assumptions. 1. Having a purpose in l i f e is essential to well-being. 1 2. Bach person has her or his own unique purpose. 3. Finding a meaning in suffering creates purpose in l i f e , by giving us direction and leading to wholeness. 4. Healing from illness is a process which has meaning. In healing, we overcome a d i f f i c u l t y through personal effort and we are strengthened and renewed in the process. Through healing we come to understand ourselves; we come to know our g i f t s , a b i l i t i e s and special task in the world; and we discover ways to express our purpose and f u l f i l l our destiny. 5. To be healthy and healed is to be whole. 6. To be whole is to be a unity of opposites, and to be in contact with a l l parts of ourselves. To be whole is to accept and learn from our i l l n e s s , pain and suffering. To be whole is to follow the guidance of our s p i r i t , which allows us to see the unity and oneness of a l l things. 7. To be whole requires that we change. 8. The change process can be understood as a journey. 9. The journey may be a painful and frightening one, yet i t holds the rich potential of our rebirth. 52 Criticisms. Psychological approaches have thoroughly investigated the transformation process brought on by c r i s i s . An important contribution has been made by indicating the need for support, encouragement and direction to people going through life-threatening crises. By using the analogy of a journey, as developed in anthropology, sociology and psychiatry, people are provided with a map for the change process. The va l i d i t y of this map must be confirmed by people's experience. There are no studies I am aware of that dir e c t l y address the concept of a healing journey from the experience of the i l l person. There are many anecdotal reports of change and survivorship, but few attempts have been made to search for a common pattern of change in people recovering from life-threatening cancer. Spiritual Disciplines  Assumptions. 1. Manifesting our s p i r i t u a l nature is the essence of what i t means to be human. 2. Spiritual nature is revealed by following our path in l i f e , and l i v i n g from our centre. 3. In following our path, we develop self-awareness and s e l f -knowledge. This connects us to the source of healing. 4. C r i t i c a l i l l n e s s holds the potential for self-realizaion, greater aliveness and s p i r i t u a l growth. 5. In accepting our pain, and honouring our struggles and our 53 suffering, we learn what i t means to be whole human beings. In this process we are healed. 6. Healing is a s p i r i t u a l journey. 7. Spiritual growth requires that we awaken. 8. The process of awakening is a healing and transformative task, requiring radical change. 9. Transformation is a fundamental change in consciousness. 10. Healing involves change: changes within oneself, and changes in one's relation to the world. 11. Por healing to be transformative, i t must take place on more than just a physical level. It must involve the healing of the mind and s p i r i t . 12. Illness teaches us the importance of love, and of letting go of feelings of being separate from others. 13. In loving and caring for ourselves and others, we heal not only i ourselves, but the world as well. 14. In healing, we cultivate the qualities of wisdom, peace of mind, compassion and generosity. We experience the desire to contribute to the welfare of others. 15. Diseases such as cancer have the potential for awakening unity consciousness and healing collective human problems. Criticisms. Spiritual disciplines regard a l l d i f f i c u l t i e s as an opportunity for 54 s p i r i t u a l growth. In honouring and accepting these d i f f i c u l t i e s , we become f u l l human beings. Thus, life-threatening illness is given an important role in human l i f e . Illness can be as great a teacher as any sp i r i t u a l master. Spiritual disciplines have identified the importance in healing of elusive yet pervasive phenomena such as love, caring, unconditional support, and unity consciouness. L i t t l e attempt has been made so far to validate these phenomena as essential to the healing process. The argument that one may learn and grow from ill n e s s has global social implications, which makes the study of this process imperative. Finding common patterns of personal change brought about by life-threatening illness w i l l tend to confirm or deny these assumptions. Both s p i r i t u a l and psychological disciplines need to validate their c l i n i c a l observations and theoretical assumptions. This is essential for broadening our understanding of healing and transformation from an experiential perspective. 55 CHAPTER 3 Method Existential-Phenoroenological Research This study documents the meaning of surviving a life-threatening disease and being transformed by i t . To f a i t h f u l l y elucidate this meaning requires a methodology which captures the experience as i t is lived by individuals. The most appropriate method for this task is existential-phenomenological (EP) research. Existential-phenomenology seeks to explicate the essential nature of human beings and their lived experience by using descriptive and reflective techniques. Existentialism is a philosophy which "seeks to understand the human condition as i t manifests i t s e l f in our concrete, lived situations". Phenomenology refers to a method which "allows us to contact phenomena as we actually live them out and experience them" (Valle & King, 1978, pp. 6-7). Traditional psychology focuses on understanding human and animal behaviour. In i t s quest to develop an objective science, i t has been concerned with phenomena that are readily observable, measurable and duplicable. Thus, human experience has been deleted from its investigation. And yet to understand individuals and their experience of joy, of suffering, of surviving a terminal disease—requires that we take human beings as they exist: l i v i n g , feeling, thinking, acting, 56 meaning-making creatures. To deny human experience as legitimate psychological content amounts to denying the whole of human existence (Colaizzi, 1978). In order to both recognize and affirm human experience, the phenomenologist reconsiders the concept of objectivity. Colaizzi (1978) defines objectivity as f i d e l i t y to phenomena. To be objective is to accurately and f a i t h f u l l y describe a phenomenon. The EP method objectively investigates human experience when i t remains true to the experience, and refrains from controlling, changing or construing the experience according to some preconceived model or theory. The phenomenological approach gives the researcher the following four guidelines. F i r s t , you assume an attitude similar to an anthropologist or ethnologist. You observe and describe a phenomenon—as i t is experienced by people—as accurately as possible, in order that the meaning of the experience for the individual is retained. Second, instead of taking the stance of a distant and impartial observer, you are present and involved. In f u l l y contacting an experience, you are touching the richness of a person's being. In the phenomenological interview, you liste n with the t o t a l i t y of your being so that you are "present in every imaginable way" (Colaizzi, 1978, p. 64). Third, as a researcher you acknowledge that by investigating a phenomenon you are influencing i t . You must then scrutinize your own presuppositions about the phenomenon being investigated in order to be 57 aware of your biases. Bias-free research is not possible; in fact, as biases are readily examined, you are motivated and propelled to more clearly understand the investigated phenomenon from a personal as well as objective point of view. Fourth, a thorough phenomenological study uses as many sources of descriptive data and methods of data collection as possible. Colaizzi (1978) l i s t s the following sources and methods: (a) dialogal interviews, which involve imaginative listening; (b) written descriptions, using the method of protocol analysis; (c) imaginative presence to the phenomenon, using phenomenological reflection; and (d) observations of lived-events (such as the experience of pain, or of dying) which involves the method of perceptual description. In this descriptive study, a l l of these sources and methods of data collection are used to some extent. They w i l l be explained later in the chapter. Dramaturgical Approach Human experience is conveyed in various forms. Drama or story form is a fundamental and natural way of communicating experience. "One of the primary ways—probably the primary way—human beings make sense of their experience is by casting i t in narrative form" (Mishler, 1986, p.67). The application of dramaturgy—the art of dramatic composition— to psychological investigation is attributed to Burke (1965, 1969) and 58 well documented by Cochran (1986; Cochran & Claspbell, 1987). Dramaturgy offers a practical method for capturing, in story form, the meaning of surviving terminal cancer. Telling the story of how having cancer has changed your l i f e is a task that invites and engages the individual. Most people love to t e l l stories, especially the big stories of their l i v e s l Stories help make events and experiences more comprehensible, and provide pattern, explanation and insight into motivation and behaviour (Cochran, 1987). Dramaturgy also guides the investigator in her explication of assumptions about the phenomenon. As a researcher I ask, why am I involved in this phenomenon? I look to my own experience and, while not a survivor of cancer, I do have my own story of transformation. Writing out this story helps c l a r i f y my assumptions, guides me in formulating research questions, and helps me anticipate the kind of stories that will'be collected. The use of a dramaturgical perspective is valuable in the process of data analysis, in identifying themes of the experience and in weaving these themes into a h o l i s t i c , integrated description of the experience. Co-researchers In existential-phenomenological research, interviews take the form of an encounter between individuals. Researchers and subjects become co-researchers (Friere, 1970). The researcher can be considered the methodology expert, while the subject is the content expert. Together they collaborate on the task of understanding the meaning of surviving a 59 life-threatening disease. They strive to be equals and to overcome the divisions created by age, education and professional status. (For discussion purposes, participants w i l l be called the co-researchers, and the researcher w i l l be known as such.) Co-researchers generally must be gently re-educated about their role. Natural science has fostered the impression that people are objects of research, expected to answer questions and f i l l in the blanks and follow direction as compliantly as possible. Conversely, co-researchers are reminded that they are the authbrites on their own experience; they are encouraged to take their own direction and time to t e l l their story in their own unique way; they are invited to edit their story so that i t expresses exactly what they want to say; and most important, they are engaged in refining the research product so that i t f a i t h f u l l y describes their experience. Selection of Co-researchers Cochran (1987) delineates the following c r i t e r i a for selecting co-researchers: (a) experience with the phenomenon, (b) a b i l i t y to articulate the experience, and (c) sufficient involvement as well as distance from the experience. The people in this study were recruited through a professional acquaintance who worked in a large urban cancer hospital. She knew of some long-term cancer survivors. (Long-term cancer survivors are defined as people who have lived longer than average with a 60 life-threatening disease.) At the time, I was working at a smaller hospital where there were no known long-term survivors. They were considered to be a rare breed! One physician estimates that "there is less than one chance in a thousand that any single physician w i l l encounter in his lifetime one true case of spontaneous cure or long-term regression of advanced cancer" (Glassman, 1983, p. 324). To be e l i g i b l e the participants had to be adults with the experience of surviving a minimum of five years beyond the diagnosis of widely metastatic or terminal cancer. (The five-year criterion is a s t a t i s t i c a l a r t i f a c t signifying that people who survive five years beyond their diagnosis of cancer have the same risk of dying from the disease as the general population.) They were able to articulte the personal growth that had occurred since the i l l n e s s . They also had enough distance from the experience to reflect on i t s meaning while the experience remained alive and v i t a l for them. The rationale of including different diagnoses of cancer grouped together under the umbrella of "widely metastatic or terminal cancer" was to create a sample of people suffering from a life-threatening disease. Cancer is not one disease, but a collection of over 100 diseases (American Cancer Society, 1974). Results may then be valid for the larger population of people suffering from serious or life-threatening i l l n e s s . The number of participants was determined in part by the practical consideration of the wealth of data that would be generated by each co-researcher. It was anticipated that a group of 5 to 7 subjects would Gl provide a rich bank of descriptions. An opportunistic sample was taken, in that circumstance delimited participation. I began with a l i s t of contacts and included everyone who f i t the c r i t e r i a . By the f i f t h interview there seemed to be enough overlapping of data that very l i t t l e new information would be received by interviews with additional people. Of course, every individual's story would be different and unique! Yet the researcher's task here is to present a comprehensive description of the transformation process in recovering from terminal cancer, without s a c r i f i c i n g the rich integrity of each account. Demographic Information Demographic data was recorded during the interviews, and was not a factor in the selection of co-researchers. Five individuals participated in the study. During the analysis of protocols from the interviews, i t became evident that one man's story was quite disparate from the others. Subsequent interviews with this man c l a r i f i e d these differences; his protocol was omitted from the collective description; yet his inclusion in this study was invaluable in highlighting the essential ingredients of being a survivor. A survivor is defined in this study as someone l i v i n g with the diagnosis of cancer who has surmounted this c r i s i s through personal effort, and emerged, transformed, with previously unknown strengths and a b i l i t i e s . Rationale for excluding P. from the analysis is that while medical c r i t e r i a qualified him as a survivor, he accepted neither that he was a survivor, nor that he had been transformed in the process in l i v i n g with 62 his i l l n e s s . These important details were discovered only after many hours of interview. Age, occupation, marital status, socio-economic level, ethnic background and medical diagnosis were reported for each individual. Co-researchers provided this information. Instead of organizing this data by category, i t was jointly decided with the co-researchers to leave each description intact, so that i t gave a hint of the flavour of each individual who wanted his or her story to be heard. The 5 participants were: 1. D, a 72-year-old woman, married, with three children and five grandchildren, a retired nurse, middleclass, English-Scot background. Diagnosed twenty years ago at the age of 52 with breast cancer, which metastasized to the lymph system and the neck about ten years later. 2. E, a 69-year-old woman, married, with two children, and a host of grandchildren and great-grandchildren. A retired hairdresser, middle class, Irish-English background. Diagnosed eight years ago with advanced lymphoma. Because the cancer was widely spread throughout (gallbladder, l i v e r , spleen, pancreas, lymph nodes and bone marrow) she was told at the time that she was expected to live three to six months. 3. F, a 65-year-old man, married, with two children (and now a very proud grandfather of three), a retired accountant/office manager, lower-middle class, French-English background, diagnosed ten years ago with stomach cancer. Due to liver metastases, he was told he could expect to live four to six months. 63 4. M, a 49-year-old woman, married, with three stepchildren, a retired computer systems analyst, English, middleclass, diagnosed 35 years ago at the age of 16 with a fibrosarcoma. This involved a tumour that was attached to the shoulder blade and over the years spread to the arm, neck, back and skin. 5. P, a single man, aged 44, a school teacher, middleclass (though presently lowerclass as a result of his i l l n e s s ) , very Scots. Diagnosed about five years ago, just shortly before his father died of cancer, with a carcinoma of the bowel which had spread to the liver and now perhaps is in the lungs. A l l participants are Canadian, residents of Br i t i s h Columbia, and l i v i n g in small to large urban centres. Interviews There were two or three interviews with each of the 5 co-researchers. A l l of the interviews were completed within a six-month period. Each interview lasted from 2 V 2 to 5 hours. Co-researchers individually determined the length of their interviews. Between 6 and 12 hours of interview were conducted with each participant. The F i r s t Interviews The story of surviving life-threatening cancer and being transformed by i t was recounted in the f i r s t interview. This experience constitutes the most important story of each person's l i f e . It is not easy to t e l l : 64 i t is complex, f u l l of deep feelings, spans the course of many years, and carries a potent meaning that is a challenge to convey, especially to others who do not share a similar experience. , How essential i t is to establish a situation of trust and comfortable rapport between researcher and co-researchers cannot be overstated. Only in a relationship where a true encounter occurs can the deeper layers of feeling and meaning be revealed. The role of the researcher i s to f a c i l i t a t e this encounter by actively enaging in imaginative listening. The researcher must be present to the co-researcher in every imaginable way—that i s , not just listening, but feeling and li v i n g through this experience with the co-researcher as i t is recounted (Colaizzi, 1978). Empathic response, reflection, paraphrasing, asking for details and probing for meaning are also important s k i l l s for the interviewer to employ. The f i r s t interview was loosely structured. It was an informal meeting in the participant's home that began with tea or coffee and provided the opportunity to become acquainted as two individuals meeting for the f i r s t time. The purpose of the study was explained to the co-researcher, and then he or she was asked to describe the experience in the form of a story with a beginning, middle and end (see following Preamble). Additional research questions were asked, as appropriate, to help provide focus and to e l i c i t more detail about the experience. Questions were not intended to standardize the interview. These questions were formulated from the review of the literature as well as the examination of personal presuppositions about the phenomenon. 65 Preamble. The purpose of the study I am doing is to discover what i t means to survive a life-threatening illness and be transformed by i t . By transformation I mean a healing process which is more than getting well p h y s i c a l l y — i t means becoming a more whole person. I'd like you to t e l l me the story of your recovery from cancer and how i t changed your l i f e . You might t e l l the story as i f you were watching a drama of someone's l i f e . The drama w i l l have a beginning, middle and end. Please use as much detail as you like to f u l l y describe your thoughts, feelings and actions around your experience. The beginning of your story might be when you found out about your i l l n e s s . The middle of the story might be a time when you remember thinking you might die, and the changes that occurred as you went about l i v i n g . The end of the story could be this present time or the point at which you feel you had recovered from cancer. 1 Interview questions. 1. What were you told in the beginning about your illness? 2. What was happening in your l i f e at this time? 3. Was there a time when you clearly remember thinking that you might die? What kept you going? 4. What was this time like for you? 5. Was this time a turning point in any way? 6. When you think of how your l i f e was before your ill n e s s , can you say in what ways l i f e is different for you now? (Probe for attitudes toward work, leisure, relationships, suffering, religious faith and death.) 7. Based on your experience of surviving cancer, do you have any suggestions for others going through a similar experience? The Validation Interview The purpose of the second set of interviews was twofold: (a) to involve participants actively in their role as co-researchers, and (b) to provide a measure of internal v a l i d i t y . As co-researchers, participants were invited to read the transcripts of their interviews and suggest any changes that would more 66 accurately express what they want to communicate. They were also given a l i s t of themes extracted from the analysis of the protocols, as well as the story of change in surviving life-threatening cancer that was drafted from a l l the interviews. They were asked in the validation interview how representative each theme was of their experience, and what needed to be deleted or refined to make i t more true for them. Particular attention was directed to the themes that were implied in their interview or conveyed through their person, but not dir e c t l y stated. The co-researchers were also engaged as editors in the story of survival: softening certain statements, emphasizing others, deleting or adding details so that the fi n a l research product f a i t h f u l l y described their experience. When the co-researchers were convinced that the description reflected their experience, internal v a l i d i t y was achieved. Other Descriptive Methods Of the four descriptive methods used in EP research as outlined earlier (see Phenomenological Research), the f i r s t method l i s t e d — t h a t of imaginative listening—has been already delineated. The second method is that of protocol analysis. In this study the interviews yielded protocols, and two of the participants offered other written descriptions: an autobiography arid a series of arti c l e s written during the illness and published in a community periodical (see Appendix). A decision was made to edit the interviews rather than present them verbatim, for two reasons. F i r s t , in talking, many people digress from the topic at hand, ramble here and there, change their 67 focus, and lose their train of thought. Editing a transcript contributes c l a r i t y and comprehension (Broadfoot, 1973). Second, co-researchers f e l t that their transcripts presented them as rather garrulous, and requested that editing be done. These condensed transcripts were analyzed (see Protocol Analysis). The autobiography and creative writing were analyzed in a similar way, f i r s t by looking for meaning  units (Giorgi, 1975), and then by extracting significant statements. Meaning units are statements which convey a certain idea, theme or description. In the written material offered by co-researchers, meaning units selected were those concepts which elaborated upon the major question posed by this study. Looking for meaning units is a good way to begin acquainting oneself with the ideas of a person's writing or speech, and then structuring these ideas. Further analysis is conducted by extracting significant statements from these meaning units. A third descriptive method is that of phenomenological reflection. In being f u l l y present to these co-researchers and reflecting on the meaning of their experience, my own l i f e was affected in a deep way. This fostered a rare and genuine learning experience. Genuine learning involves "wresting a l l that we can learn from the actuality of our own lives as exquisitely unique, individual persons" (Colaizzi, 1978, p.135) as distinguished from the acquisition of facts and information. Genuine learning radically restructures our world-view, our attitudes and values, so that—what I learn changes me. A fourth and f i n a l method is that of perceptual description. With this method you f a i t h f u l l y express what is perceived through the senses 68 of sight, hearing, feeling, etc. rather than thinking, analyzing or summarizing. Jager (1978) provides a good model of perceptual description. This method uncovered some important phenomena in this study: the experience of being with someone who is in pain, the experience of being with someone who (thinks he) is dying, the experience of being with survivors who are f u l l of l i f e . These lived-events (Colaizzi, 1978) are described b r i e f l y in the following chapter. Procedure Co-researchers heard about the study through a health professional of their acquaintance or a fellow survivor. The study was discussed between them before they were contacted by the researcher. The researcher determined whether each person met the c r i t e r i a for participation and was willing to participate, explained the study in greater de t a i l , discussed time commitment, and set up the interview. The interviews were informal, unstructured, non-standardized and dialogal. The co-researcher was encouraged to t e l l the story in her or his own way (according to Cochran, 1986, 1987). This required the researcher to get to know her or him as a person and a survivor, slowly and over a period of time. Interviews were audio-recorded and transcribed. The written copies served as protocols which were analyzed according to Colaizzi (1978). Before the second interview, co-researchers were sent copies of the transcripts of their interviews, a l i s t of the themes derived from a l l the interviews, and an exhaustive narrative called the phenomenological 69 description. They were asked to read through this material, and invited to become active editors, reflecting upon and writing in any deletions, additions and changes. Protocol Analysis Analysis of the transcripts followed the method outlined by Colaizzi (1978, pp. 57-67). 1. The accounts of the participants' experience of surviving terminal cancer and being transformed by i t were read and re-read. This renewed familiarity with the protocols, and allowed the researcher to acquire a feeling tone for each interview. 2. Significant statements that related to the research question were extracted from each protocol and written on colour-coded index cards distinguishing each of the five participants. Similar statements were grouped together with the idea of choosing one statement that best represented similar statements, and eliminated repetitions. The process of colour-coding statements was an excellent visual tool for discovering patterns. 3. Formulated meanings were derived from each significant statement by the process of creative insight. These meanings attempted to capture what the participants meant by what they said e x p l i c i t l y or implicitly, and were essentially themes derived from the stories. The researcher has to go beyond the original data to arrive at contextual meanings. The actual words of the participants were used as much as possible so that the themes illuminated the meaning of the statements, 70 rather than imposed a meaning which may not have been accurate. Themes reach for a level of abstraction to express what various statements have in common, without losing the meaning these statements have for the individual. Por example, the theme "appreciating one's uniqueness" was derived from the statements of four individuals: What I say may be total garbage for anybody else but me. Out of the five b i l l i o n people on this earth, I am unique, and what I say could be unique as well. You are yourself instead of trying to keep up with the Jones*. I used to do things and say things and behave a lot on the basis of what other people would think of me. And I started to be more open and speak up for myself, which I had never done, without worrying about whether people were going to like me a l l the time. And then I realized that i t was quite okay not to like somebody and for somebody not to like me. And now, at this ripe old age, I don't care whether anybody likes me or not! You see, i t doesn't matter! The l i s t of themes was created by theoretical sampling and using the principle of saturation (Glaser and Strauss, 1967). Each protocol was analyzed in succession, using a building block approach to add new themes to the collection as they appeared. A saturation point was reached when there was sufficient overlapping of data that l i t t l e new information would be discovered with additional interviews. The researcher endeavored to remain true to the participants' experience by referring these themes back to the original protocols and looking for deviations and deletions. At this point ambiguities became evident. The researcher questioned whether the derived themes captured the essence of the significant statements, and noted specific points to 71 be discussed later with the co-researcher for c l a r i f i c a t i o n and validation. The researcher also noticed themes which were not mentioned in a particular protocol and also needed special attention with the co-researcher for validation. The rationale for including material not mentioned in a person's description of their experience is outlined by Collier and Kuiken (1977). "Selective attention, forgetfulness or an i n a b i l i t y to express certain aspects of an experience" (p. 215) may result in omitting details of an experience that may be actually quite important. Another step, not mentioned by Colaizzi, was taken to insure f i d e l i t y of the themes. The l i s t of themes was examined by several outside reviewers (Cochran and colleagues), who determined whether the themes accurately expressed the meaning of the co-researchers' statements. The reviewers also looked for ambiguity and redundancy in the themes, and made suggestions for improving c l a r i t y . 4. The l i s t of themes was organized into clusters that provided a structure of the data while remaining true to each participant's experience. 5. The themes were woven into an exhaustive narrative of what i t means to survive a life-threatening disease and be transformed by i t . This is known as the phenomenological description and is written as a story which reveals the prototypal pattern of the experience. 6. The phenomenological description was condensed into a summary of the experience. This is called the essential structure of the experience, and is designed to communicate the heart of the experience 72 as concisely and unequivocably as possible. 7. The last step was to validate the findings by returning to the co-researchers and asking whether the themes and story accurately reflected their experience. Particular attention was given to aspects of their experience which were neglected or poorly stated, and to refining the story so that i t correctly described their experience. New data from these interviews were worked into the fin a l product. 73 CHAPTER 4 Results Experience of the Researcher The process of doing this study was a transfixing and transforming one. It took place over four tumultuous years of my l i f e which paved a golden path to asking people such a personal and deeply meaningful i question about their l i v e s . The basic assumption which guided this research is that crises crush us and mould us, thrusting us forth into new l i f e or leaving us crippled. I hypothesized that people who survive a life-threatening illness have died a different death—a psychological one. In recovering from terminal cancer, I expected that people would undergo a healing process that would radically change their l i v e s . I f e l t that such survivors can teach us about the process of healing and becoming a whole person. The literature review reinforced these presuppositions, and also suggested that cancer may be a s p i r i t u a l journey that holds the opportunity for discovering more about ourselves, and what we are really l i v i n g for. At this point I would like to delineate my reflections about the research question, as these reflections constitute important phenomenological data. 74 I am convinced that i t was my own s p i r i t u a l journey that guided me a l l along the way in this research—from formulating the question, to having such intimate dialogues with people, to yielding my own l i f e to be changed in the process. I was unprepared for the enthusiasm the co-researchers had for this project, for their willingness to open up their lives to a stranger and share their struggles so honestly. I was immediately struck by the presence of these survivors. They are very different people from so many other cancer patients I had known over the years from my work in the health f i e l d . In essence they are not at a l l average. They are f u l l of ideas and passions; they love people and they love l i f e ; they love talking, sharing their own lives and touching other lives in a meaningful way. They are v i t a l , vibrant, confident, unique individuals. As I reflected on the meaning of their experience I was impressed by the fact that, as these people talked about their recovery from cancer, they were t e l l i n g me what was important in their lives and how they came to be the kind of people they were. They were t e l l i n g me stories of becoming more whole. And these stories were contagious—they put probing questions to the listener and engaged her as a fellow traveller on the path of growth and wholeness. For instance, in dialoguing with M. about how she helps other cancer patients, I am suddenly jolted into thinking about my own l i f e . M. has something to teach me and a l l of us when she says, 75 What would you like to do with the rest of your l i f e ? What do you really, r e a l l y want to do, and why haven't you done it? And what's stopping you doing it? M. is not talking to the taperecorder; she is dialoguing with me and encouraging me to reflect upon my l i f e . She echoes the strong message voiced from everyone I interviewed that we take every opportunity to discover what i t is we want in l i f e and how we want to li v e , to grab hold of our dreams and to live them—to follow our b l i s s ! ! One of my great teachers, Amy Mindell, talks about illness as a meaningful event, not only of personal significance, but of collective value. As I experienced the powerful impact that these individuals were having upon my l i f e , I understood how i t is that survivors of a terminal illness can teach us about essential collective issues. Here were people who had stood at death's door and returned with a vibrant appreciation for l i f e . And now they were impressing this same message upon everyone who would l i s t e n . I found myslf going through a similar process to the co-researchers—assessing my values, setting new priorites, looking to my sources of enjoyment, giving more value to relationships. Interviews I n i t i a l Interviews Two of the participants were interviewed twice in the f i r s t series of interviews due to mechanical problems which affected the audio-recording of the i n i t i a l interview. In recapturing the lost data, the format for the second interview was different; to have asked these 76 co-researchers to share the same story simply for the purpose of tape recording would have lacked genuineness. The second interview was even more dialogal, involved more direct questions based on the i n i t i a l interview, and f a c i l i t a t e d the sharing of new insights and different facets of the experience. What was lost in comprehensiveness was gained in strengthening the relationship between interviewer and co-researcher, so that deeper layers of the experience could be uncovered. , The interviews provided the opportunity for co-researchers to give voice to a transformative experience that spanned 5 to 35 years of their l i v e s . It was the f i r s t time that any of the co-researchers had been invited to talk without restrictions about how having cancer had changed their l i v e s . For several of the co-researchers this dialogue was empowering and changed them as persons, just as a good counselling session can. They f e l t they had gained greater understanding of their path, and confirmed their purpose in l i f e . This verified Colaizzi's (1978) observation that dialogal research enters the realm of existential therapy. It was evident from the hours that we spent together that we were both, researcher and co-researcher, re l i v i n g poignant and painful and transforming moments of l i f e . We cried and laughed together, sharing stories, singing songs, sampling the new homemade wine—intimately sharing a l i f e experience. This study attempts to capture the flavour of the experience; what actually transpired cannot be adequately described in words. Interviews were an encounter, a "meeting of like souls" (according 77 to one participant), and would last from 2 1/ 2 to 5 hours. Of each interview, 1 to 3 hours was spent on the actual t e l l i n g of the story, and this portion of the interview was audio-recorded and transcribed. (See Appendix for transcripts of the interviews and other written sources in their edited form.) Validation Interview The themes and the description of the transformative experience were validated by the the co-researchers in the validation interview. This is a crucial step for the researcher in dispelling her doubts about misrepresenting the participants* experience. The four co-researchers included in the f i n a l analysis unanimously validated the story of transformation with statements lik e , "This is excellent!" "I couldn't say i t any better!" "I think you've done a marvellous job of taking the information from a l l of us and organizing i t so well." Where changes and refinements were suggested, they were acknowledged as accounting for individual differences which did not detract from the trueness of the story. "Sure, I might say i t a bit different, but that's because we're a l l individuals." "That's not exactly true for me, but I know i t ' s true for others." These changes in the wording of a theme or description of some facet of the experience were worked back into the f i n a l product un t i l participants agreed that their experience was truthfully represented. They enthusiastically supported the idea of a common story of change in survivors that s t i l l allowed for individual differences. This concept 78 is supported by Cochran (1986) when he says, "Similarity in content (of the stories] offers no basis for generalization. However, what a l l these people have in common is that they attained personhood" (p. 92). For some, this attaining of personhood meant becoming more f u l l y who they were—living from the core of their being. For others this transformation process meant discovering resources that were previously dormant, and developing new s k i l l s and attitudes. The Case of P. It was mentioned earlier that one participant's story was very different from the others and that his protocol was omitted from the collective story. An analysis of these differences helps to expand the description of being a survivor. The essential features of being a survivor were emphatically delineated during the interview process. To be a survivor you must believe that you are going to l i v e , expect that you w i l l l i v e , and activate your w i l l to li v e with determination, courage, hope and optimism. A survivor has the conviction that l i f e is worth l i v i n g , is buoyed up by the love and support of others, and has identified a clear purpose in l i v i n g . Setting goals for the future becomes a way of expressing that you expect to live and have things to li v e for. Survivors are transformed in the process of recovery by embarking on a journey that radically changes their l i v e s . People who are transformed by illness celebrate l i f e as f u l l and rich and meaningful, experience more joy in l i v i n g , and develop closer, more satisfying relationships. 79 In the process of healing, they become whole and unique people, and give inspiration to others. Let us look now to the case of P.; c a l l him Paul for discussion purposes. Paul is within a couple of months of meeting the five-year survival mark, which perhaps gives him less perspective on his illness than the other co-researchers, who were diagnosed from 8 to 35 years ago. And yet despite some si m i l a r i t i e s with the others, dialogues with Paul revealed glaring differences. Paul lacks that undaunted faith and belief in survival. He doesn't communicate a strong w i l l to l i v e , he has doubts about his survival, and often feels like giving up. I'm not a cure. I'm just surviving at the moment. And sometimes : i t feels like less than surviving. I feel like I'm just hanging on by the edge. I wonder i f I'm going to make i t through. This last l i t t l e while I don't think that I am. I feel more pessimistic than I have in the past. We might ask i f i t is indeed crucial to believe in your own survival in order to overcome a life-threatening i l l n e s s . A prospective study could better answer this question, which is beyond the scope of this study. C l i n i c a l experience with cancer patients, however, does support this assumption: "I never met a patient who had lost the w i l l to live and recovered. Every physician I met or spoke to, or who wrote about the w i l l to l i v e , confirmed that without i t survival was not possible" (Glassman, 1983). Survivors support their stance by aligning themselves with other cancer survivors and people who have conquered their d i f f i c u l t i e s with courage and determination. Survivors are successful people and they 80 surround themselves with success stories. Paul is different. He identifies with failure and with death: in his own l i f e , in those who die from cancer, and in suffering heroes. As he searches for a heroic theme for guiding his l i f e , he recalls the stories of two Greek heroes, Sisyphus and Prometheus, both of whom are eternally punished by the Gods for evoking their disfavour. Sisyphus was condemned forever to r o l l ! a rock uphill as punishment for tricking Death. For Paul, illness is a curse and a punishment. My l i f e has been useless. I haven't accomplished anything. My l i f e hasn't made much sense. [I identify with] death and failure; lostness and d r i f t i n g in the sea. I feel a bit like Job who was given a l l these hard tasks, a l l this unfair treatment. And I think he dies in the end. I discovered later, in the literature, that this mythical theme of Sisyphus is common to the experience of cancer patients (Lockhart, 1977). According to Jungian analysis, this is a theme of recurrence without resolution. Jungian analysts would encourage the dreamer to actively work with dream material, and create a new ending. Lockhart suggests that "recurrent dream and recurrent cancer may be related" (p.65). It is interesting that Paul's spontaneous image is common to other cancer patients, and this would undoubtably have been beyond his knowledge; Paul does have recurrent cancer; and he needs to discover a new and hopeful theme for his l i f e . Perhaps the meaning of Paul's illness for him w i l l be simply to endure his suffering with fortitude, like Job and Sisyphus. Viktor Frankl, who writes extensively from his experience as a concentration camp survivor, says that "to live is to suffer; to survive is to find i 81 meaning in the suffering" (Frankl, 1984, p. 9). Sometimes the only meaning l i f e has comes from learning to endure suffering, becoming ennobled by i t , and experiencing a sense of accomplishment by courageously enduring that suffering. Survivors who have been transformed by their illness have a marvellous capacity to search continually for the good in any experience, redefining their problems in a positive light, comparing their own situation optimistically with those who are worse o f f — i n essence, accepting their fate. Paul, on the other hand, presents himself as dis s a t i s f i e d , angry, c r i t i c a l and a fai l u r e . He blames others for his d i f f i c u l t i e s , and views his illness as an escape from the challenges in l i f e . I guess I would have been a normal person i f I could have kept a teaching job. I don't think I would have got cancer nearly so early. It was kind of a r e l i e f to have cancer and to have an excuse for not doing anything. Although Paul does set some goals for himself, they are the kind of goals that simply keep him occupied, and do not give purpose to his l i f e . He lacks the vision of a future, and feels trapped, punished and defeated by his i l l n e s s . I feel trapped by cancer. I have less energy, I have less hope, I have less future. I just haven't done that sort of risking and making a commitment to do something. This psychologist said, "You don't know what you want. You don't know what you're doing. You're screwing around." Of course Paul wants to l i v e , wants to fight, and is just beginning to use his illness as an opportunity to reflect on what is really important to him. 82 There's a lot of issues around cancer. Spiritual issues. Whether l i f e is worth l i v i n g . What makes me a happy person. At this point he has more guestions than answers, more ruminations than actual change in attitude or behaviour. He is beginning to experience, in a limited way, some positive aspects of l i v i n g with cancer. I'm much more aware of other people's problems. I wouldn't have had that awareness of what pain and i l l health and a lack of a future mean to so many people. I think I appreciate just being alive, more so than before. People I've met through cancer have been a blessing. Paul experiences l i f e as a struggle rather than rich and meaningful, hides his illness from others, and pulls back from close relationships. ' I haven't told anybody in the school system [where I work] that I have cancer. In some ways I feel like I've been trying to distance myself. If I'm going to die I don't want to be that close. Prankl descibes the striving to find meaning, whether i t is something meaningful that we do or that we create, or experiencing love and knowing that somebody needs us, as a primary motivational force in l i f e (Weisskopf-Joelson in Valle & King, 1978). Whether Paul can and does invite his cancer to really transform his l i f e is a fascinating question perhaps for another study. What would cause him to give up? What would inspire him to fight? To be with survivors of terminal cancer who have been transformed by their illness is to be inspired, moved, and changed in some indelible way. It is quite a different experience to be with Paul. The experience of dialoging with someone who was often uncomfortable, in pain, and thinking he was dying can best be expressed using the method 83 of perceptual description. Perceptual description was defined earlier as f a i t h f u l l y expressing what is perceived with the senses of sight, hearing, feeling, etc. rather than thinking, analyzing or summarizing. Paul is a handsome, well-dressed and -groomed man. He s i t s erectly, with composure, and commands attention. When he talks about his illness and his l i f e a change comes over him. He collapses in his chair, closes his eyes, and sli p s away into a sleepy, dreamy, coma-like world. He w i l l speak for a b i t , s h i f t in his seat, groan, close his eyes, d r i f t away s i l e n t l y for some time, and return a l i t t l e disoriented to the conversation at hand. One researcher talks about the po s s i b i l i t y of experiencing an event by giving in to the contagion of passion (Jager, 1978). To be with Paul is to experience the contagion of this state. I found myself becoming sleepy and distracted and feeling l i f e l e s s . This contrasted sharply with my experience in the other interviews, when I experienced the contagion of being alert, f u l l of v i t a l i t y , passion and purpose. Without Paul's story we might have inferred that simply in surviving a life-threatening disease one is transformed by i t . As other survivors show, the process is not a passive one at a l l . It is not a matter of just making the five-year survival mark. The process of being transformed by c r i s i s demands courageous and wholehearted engagement, and the willingness to risk a l l that is familiar, ordinary and routine. 84 Context tor Analysis A story comes into being because of the gap between what is and what ought to be (Cochran, 1986). In this story, "What i s " is being told you have a life-threatening i l l n e s s . "What ought to be" is happy old age. In the beginning of this story the conflict is made e x p l i c i t . It is a c r i s i s that makes the story of transformation take place. Indeed, i t appears that i t is the negative s t a t e — a l l that constricts us or wounds us—that is the ground for the story, the search for meaning and the c a l l to change. The middle of the story is the path toward the resolution of the c o n f l i c t , and shows how changes are made. The end of the story is not necessarily happy old age; i t might be a different kind of aliveness. In reflecting on how to organize the many themes of these survivors' stories, a number of p o s s i b i l i t i e s became apparent. One mode is a personality p r o f i l e — i n this case, a profile of a person who survives a life-threatening disease and is transformed by i t . Here we would expect a collection of discrete t r a i t s that would describe this kind of person, albeit from their point of view. What would be completely lacking would be the description of the process—the active and courageous involvement of becoming the kind of person who does surmount terminal cancer. A second mode of description is the story, a "completed action or drama with a beginning, middle, and end" (Cochran, 1986). Here we can present the autobiography of a survivor—the story of how a person comes to be this way. This study suggests a specific type of story: that of 85 a portrait, which is a story describing a person. This is a third mode of description. Cochran (1986) expains that the portrait is "a composition in which qualities interdepend and interpenetrate" (p. 106), presenting a person's regnant or dominant position, and capturing the constancy and wholeness of a person. A person's l i f e story is implicit within their portrait. In this portait of transformation, the regnant position is that of being a survivor and a fighter. The story is a journey of healing initia t e d by the threat of death, which marks the beginning of the story. I have named the beginning or the f i r s t stage of the journey as the " c a l l to change". (See Clusters of Themes.) The middle of the story is the beginning of change, designated as "the beginning of new l i f e " . I describe the end of the story as "rebirth". Organizing the themes into three stages, and likening the story to a hero's journey, was validated by the individuals who shared their l i f e experience as survivors. In describing this story in three stages there is no intention of depicting a linear process. Instead, these parts indicate a general beginning, middle and end of a story of transformation. Of course, there is no real end to this change process, only one that is marked by this moment in time. Themes are organized in such a way as to provide structure in the narrative, and do not suggest a discrete series of steps that cumulate in personal transformation. For each individual the story is unique, and like the old-fashioned oatmeal cookie, while the ingredients are the same for a l l , the texture and the taste of the cookie changes with each baker. 86 Clusters of Themes A. Call to Change 1. Being threatened by death 2. Believing in your own survival 3. Reinforcing the w i l l to li v e 4. Asking for advice and questioning experts B. Beginning of New Life 5. Having a fighting s p i r i t and determination 6. Being willing to take risks 7. Maintaining hope, optimism and a positive attitude 8. Having a sense of curiousity about l i f e 9. Facing your fears 10. Distancing your problems 11. Redefining problems in a positive light 12. Being able to laugh at yourself 13. Being inspired by others who overcome their d i f f i c u l t i e s 14. Depending upon support from others 15. Seeking out meaningful communication 16. Pursuing self-knowledge 17. Learning to manage stress 18. Finding creative solutions to problems 19. Setting short-term, evolving goals 20. Learning to compensate 21. Becoming more adaptable and accepting C. Rebirth 22. Accepting death 23. Enjoying l i f e f u l l y 24. Defining your beliefs about survival 25. Questioning old values and setting new priorites 26. Having a clear purpose in l i f e 27. Perceiving d i f f i c u l t i e s as a challenge to surmount 28. Learning from having cancer 29. Having a sense of gratitude and appreciation for l i f e 30. Being able to express feelings f u l l y 31. Asserting yourself 32. Expressing your independence 33. Developing more caring and satisfying relationships 34. Helping others in need 35. Inspiring others 36. Enlarging your sense of community 37. Appreciating your uniqueness 38. Having a richer and more meaningful l i f e 87 Themes 1. Being threatened by death The likelihood of an untimely death becomes a concrete r e a l i t y when you are told by your doctor that you are expected to live only a few months longer or, because of widespread metastases, this is the implication. D. When I f i r s t got cancer when I was fifty-two, I didn't feel so much threatened by death. I thought, I have cancer, what am I going to do about it? I f e l t threatened by death ten years later when I got a metastasis. I thought, well now I'm dying, that's for sure. The second time round, this is what you think. E. It was the family doctor that come in on Monday morning and he says, "I hear you've had a rough time of i t . You've got cancer. It's a fast-growing one, and you've got three to six months to l i v e . " F. The results of the scans were that i t had invaded the mouth of the li v e r . And I asked [the doctor], "How long have I got?" And I only remember his saying, "You have four to six months to l i v e . " M. When I was really in great pain and I was a l l bent over, and they didn't see how they could operate without taking off my entire arm from the neck here, and they s t i l l couldn't promise that that would be successful. They weren't sure how much i t had spread. They didn't say that you're going to die in as many words, but the implication was there. And then the next time that was very definite was in Montreal when they sent me back to die because I had this tumour in here that they couldn't operate on, with everything to the brain going right through the middle of i t ! They told me that I should go back—as soon as I was well enough to travel from Montreal to England—to spend as much time as I had l e f t with my family. 2. Believing in your own survival There is faith in your own survival and healing, even when many of your own family have died from cancer. You have the belief that cancer can be cured, and refuse to accept dying u n t i l i t is time. 88 D. The neighbours a l l had me dead. And I s a i d , " I ' m not d y i n g t o d a y . " A l o t of people a s s o c i a t e cancer w i t h d e a t h . And you s e e , I d i d n ' t . I was d i f f e r e n t i n t h a t r e s p e c t . E . I l o s t two b r o t h e r s a f t e r I got i t . One took t o h i s bed and he s a y s , "Our mother d i e d of c a n c e r . Our grandmother d i e d of c a n c e r . I ' m g o i n g to d i e of c a n c e r . " And I s a y s , " J a c k , you d o n ' t have t o . Look a t me!" Because I know i n the o l d e n days cancer meant d e a t h . Now i t d o e s n ' t . But u n l e s s you have seen o t h e r people t h a t have got b e t t e r , you b e l i e v e the o l d s t o r y t h a t cancer i s d e a t h . F . When I was i n danger then I had an a i m . I ' m q u i t e c o n v i n c e d t h a t t h i s i s another i n g r e d i e n t . Not o n l y the w i l l and the need to l i v e , but the e x p e c t a t i o n of l i v i n g . Never once t h a t I r e c a l l , I never l o s t the c o n v i c t i o n t h a t I would s u r v i v e i t . The thought of d y i n g d i d n ' t c r o s s my m i n d . I have a f e e l i n g t h a t a t my v e r y l a s t b r e a t h t h a t I would have the f e e l i n g t h a t I was g o i n g to s u r v i v e . I t h i n k I wanted t o s u r v i v e . M. At no t ime d i d I ever a c c e p t t h a t I c o u l d d i e . I d i d n ' t have a s p e c i f i c f e e l i n g about want ing t o l i v e . J u s t not b e l i e v i n g t h a t I would d i e . 3. R e i n f o r c i n g the w i l l t o l i v e For some t h e r e i s a sudden s h i f t from b e l i e v i n g i n the p r o g n o s i s of premature death t o want ing t o l i v e . Others e x p e r i e n c e something of l i f e t h a t i s so p o w e r f u l t h a t t h e i r w i l l to l i v e i s c o n s t a n t l y s u s t a i n e d . D. Another t h i n g t h a t gave me a boost was the f a c t t h a t Stew was so d e v a s t a t e d when I f i r s t got c a n c e r . I made an e f f o r t because he expected me t o . There was one day t h a t was r e a l l y b a d . That same day a l e i a r r i v e d from H a w a i i — m y youngest daughter was i n Hawai i and she a i r m a i l e d t h i s up t o me—and I put t h a t around my neck. And then a p h o n e c a l l came from my son who was i n T o r o n t o . I a lmost c r i e d . I t was d i f f e r e n t , knowing people c a r e d . I d o n ' t t h i n k I would have made the e f f o r t o t h e r w i s e . E . When [the d o c t o r ] s a i d t h r e e t o s i x months, I f i g u r e d , w e l l , I b e t t e r get ray l i f e i n o r d e r . There was t h i n g s I f e l t I had to get done—what k i n d of f u n e r a l . The next day [a cancer s u r v i v o r ] had come to see me. S h e ' d t o l d me to q u i t l y i n g aroung f e e l i n g s o r r y f o r myse l f and get on w i t h i t ! I f she c o u l d do i t then why c o u l d n ' t I? No d o c t o r ' s g o i n g to t e l l me when I 'm g o i n g to d i e ! 89 F. I used to force myself to do a certain amount of work. If I progressed in my a b i l i t y to work, I was progressing in my a b i l i t y to survive. I used to sort out gravel from the junk and put i t on my yard [when I was landscaping the new home]. I made up my mind that I would do thir t y barrel-loads a day. And one day I was feeling t e r r i b l e , just awful. And I thought, "You're crazy! Somebody in your state of health would be lying in bed, comfortable as possible. They wouldn't be in the cold and wet and the sleet!" I was sick as a dog. I'd just had chemo. "Why are you doing this?" And another l i t t l e voice said, "If you don't do this, you're letting yourself down. You're not doing the right thing. People die in their beds, but fewer die picking out garbage from a wheelbarrow!" I made up my mind to do i t , and I did i t ! It was a tremendous struggle!! But I never found i t such a struggle again as I did then, and I progressed from there. It seemed to be a transitional moment of my l i f e . Right then! I f e l t that i f I pushed on I would survive. People who give up aren't going to make i t . I f e l t better about myself not quitting. It did enhance my self-image by not quitting. It was the savings of me! By my own a b i l i t i e s I saved myself. M. Perhaps, i f anything i t was my great desire to see the rest of the world before I died—that could have been something that inspired a w i l l to l i v e . To see i t a l l ! Especially nature! I always f e l t that God made a very beautiful place. I think I basically loved l i f e ! Just being there! 4. Asking for advice and questioning experts You begin to confront unknown aspects of your future by actively seeking out information and direction from professionals. D. When I got in hospital I said to the doctor that I wanted to know what was coming down. And he said, "As soon as I know, you'll know." And that was very helpful. Even bad news is better than not knowing. E. I kept a record, a day-by-day record of how I f e l t and how I was responding, so the doctor would know the after-effects of a drug. Whether I spent most of my day in bed, or whether I was up doing things. And both Nick and I t e l l this to other patients. Keep a record. Write out your questions. Write out two lots—one that you give to your doctor, and the other you keep. I f i r s t wrote out how I was feeling, and then the questions. I'd make two copies. He got one and I kept one, to make sure he answered each of those questions. Because a lot of doctors w i l l slough i t off. You get right by that door, put both hands out and don't let him get out unt i l you have your questions answered. You need to get your 90 q u e s t i o n s answered. I t ' s your body. F . I asked [my d o c t o r ] , "What t rea tments do you have?" I knew d o c t o r s ! would h e l p me. We're a l l p r o b l e m - s o l v e r s i n t h a t way. We a l l answer a need of somebody e l s e . I was v i t a l l y i n t e r e s t e d i n p r o s p e c t s of s u r v i v a l and p r o s p e c t s of h e l p . M. Ignorance was never b l i s s . I p r e f e r r e d t o face something t h a t I knew a b o u t , even i f the knowledge d i d sound h o r r i f y i n g : i t was f a r more f r i g h t e n i n g not t o know what was g o i n g o n . I a lways asked a l l the q u e s t i o n s . 5 . Having a f i g h t i n g s p i r i t and d e t e r m i n a t i o n You need to know what you want i n order t o f i g h t f o r i t . You want t o l i v e , you become t e n a c i o u s and p e r s e v e r i n g , and you r e f u s e t o g i v e up when t h i n g s get d i f f i c u l t . D. I came home from s c h o o l i n grade one and I had l o s t a f i g h t . I came home c r y i n g . And they s a i d , "You l o s t a f i g h t , d i d n ' t you? T h a t ' s the l a s t f i g h t y o u ' r e g o i n g t o l o s e ! " And i t was. Things have to be p r e t t y bad f o r me not t o keep t r y i n g . E . I t o l d [my husband, who had brought the f u n e r a l papers f o r me t o s i g n ] to get the h e l l o u t . I w a s n ' t dead y e t ! F . I ' m the c l a s s i c person t h a t [sees] a h a l f b o t t l e i s h a l f - f u l l r a t h e r than h a l f - e m p t y . Whenever I t h i n k something i s r e m o t e l y p o s s i b l e I go f o r i t . What have I got t o l o s e ? You always push f o r the optimum. I ' v e o f t e n thought t h i s a b i l i t y to e x t r a c t the a b s o l u t e maximum from a s i t u a t i o n i s perhaps one of the i n g r e d i e n t s . I never g i v e up ! M. Over the y e a r s God has indeed been h e l p i n g me i n a d i f f e r e n t way— g i v i n g me the s t r e n g t h and the d e t e r m i n a t i o n to s u r v i v e i n s p i t e of the t imes when i t seemed t h a t e v e r y t h i n g was a g a i n s t my d o i n g s o . I have never been a q u i t t e r . 6_. B e i n g w i l l i n g t o take r i s k s There i s a need to take more r i s k s , as there are no immediate s o l u t i o n s and no f a m i l i a r p a t t e r n s t o f o l l o w . 91 D. [A woman) was wondering i f (she) should go ahead with this [chemotherapy] or not. "What would you do?" I said, "I can't t e l l you what to do. But for me i t ' s like swimming across the lake. The f i r s t time you start you don't know whether you can make i t to the other side. But i t ' s fun to try." E. The doctors who come up with the experimental treatment that I went on, they asked i f I would go on i t . There was no hpoe otherwise. So, would you like to try it? Sure, why not? If there is a chance i t would help. So I went on i t . And i t worked. F. You've got to be able to take risks, especially i f you're faced with threatening operations or having to take chemotherapy, or radium treatments. The doctor said to me, "We don't know what we can do for you. We're going to have to experiment. We haven't tried i t on anyone else. How do you feel? There's no promises here." And I said, "Go ahead! Go your best l i c k ! ! " You've got to grasp at that straw. It doesn't matter whether that straw w i l l support you or not. But you s t i l l have to take those chances. M. I wasn't so willing to take risks before un t i l I thought maybe I wouldn't be around much longer, and then I started doing a l l sorts of things that I might not have done. I must have been mental at times to have stuck i t out [before]. I guess I was just very stubborn, obstinate or whatever. If anybody else could see themselves in a situation where i t ' s screaming at you to get out, well for God's sake, Go!! Do i t ! 7. Maintaining hope, optimism and a positive attitude You are an optimist. You can maintain a positive direction and, while s t i l l having negative thoughts, you don't allow negativity to predominate. There is a good balance of positive and negative thinking, while anticipating the best possible outcome. D. If i t ' s a chore to be positive i t ' s not going to work. The reason you should have positive thinking is when you're laughing and when you have humour, you feel better. If you're well you have negative thoughts as well as positive thoughts. And i t ' s okay to have a negative thought, as long as you don't let i t get a hold of you. E. There's more programmes going on with cancer. There's more treatments coming up. Some of the doctors have come up with the genes in the cancer c e l l s . They've found out what is causing i t to change. And they figure they've got the cure for cancer. If this 92 works i t ' s going to be dandy. F. You can always talk people into optimism. There's a rub-off effect on both pessimism and optimism. A positive attitude is absolutely essential. I've seen cases where a negative attitude has k i l l e d someone. M. I feel that a positive attitude of mind can be beneficial in absolutely everything, and that any medical treatment w i l l have a better chance i f the patient is less depressed and stressful. Negativism breeds negativism! It's got to get better. Just stick , i t out a bit longer and i t can't get any worse. 8. Having a sense of curiousity about l i f e There is the feeling that l i f e is an adventure, and even though this illness is not what you bargained for, there is s t i l l an open, chil d - l i k e curiousity about what l i f e w i l l bring. D. I've always been very curious. I used to drive my father crazy asking why. You have to learn to live day by day and not expect to know what's coming. E. There's a big world out there! Let's look!! F. I'm curious and inquisitive at the best of times, and the worst of times, too. M. I have always been a very, very curious person. I've always wanted to know why and how. 9. Facing your fears The biggest fear is the fear of death. You are willing to confront this fear directly. D. Sooner or later you've got to face up to i t — n o matter what fear i t i s . Even i f I'm frightened I ' l l s t i l l face up to i t . One day I would say, "This isn't f a i r ! My parents lived to their eighties." And the next day I'd say, "To hell with this!" And I'd enjoy myself. E. Sure, I ' l l most l i k e l y die with cancer, but I'm damn sure i t ' s going to be a lot further down the road! 93 F. I think the fear of the pain and the fear of the wasting away k i l l s a lot of people, especially men. I think we have to face up to our concerns and fears. Here's a strange thing though—the cancer i t s e l f doesn't hurt. I often think now, apart from the pain which they were able to treat with drugs quite quickly, what were the real manifestations of cancer except what the doctor was saying was happening to you? M. I've never been afraid of dying. I wonder what i t would be like to die, as i f I'm curious to find out! It's almost as i f I wanted to experience i t , just to see what i t was l i k e ! I don't think you can really come to terms with l i v i n g u n t i l you're not afraid of dying. 10. Distancing your problems Anything which creates an outward focus is helpful in distancing your i l l n e s s . Thinking of others instead of yourself is one good way of redirecting your thoughts. At times you might also minimize the implications of having a life-threatening disease, or make positive comparisons with others. One woman with cancer can accept the miracle of her 35-year survival by sometimes simply denying her i l l n e s s . D. You can look around and see people much worse off than you doing very well. What really helps is to see that you're not alone. There's other people with the same or maybe worse problems than you, and so you're able to minimize your fears this way. And thinking of others instead of yourself is a big help. When my husband had to have an operation, being concerned for him got my mind off myself. Anything, absolutely anything that gets your mind off yourself is good. E. It is something that is always in your mind once you've had i t . You can push i t back and not worry about i t . I think that goes for a lot of cancer patients. If they're not thinking of themselves they're a lot better off. Get your mind off yourself and your cancer. It makes you feel good doing something for somebody else. [My husband] had open-heart surgery. I had to think of him. And he was squawking about me travelling on the buses to v i s i t him in the hospital. I didn't have to go. But he was my husband and he was going through h e l l , so why shouldn't I go? So I forgot about having cancer or anything else. 94 F. It was on my mind constantly. But i£ you can blot i t out of your mind wouldn't that be advantageous, as long as you don't li v e an illusory l i f e ? I used to say, "I'm okay. I'm not hurting. I can s t i l l get around. I'm not a basketcase." And that way i t ' s a very positive thing because i t helps you get along with your l i f e . M. The fact is that I've never been what I c a l l i l l with cancer. I feel more i l l when I have the f l u . I don't confuse pain and physical discomfort with being i l l . Even when I was so doubled up with pain that I could hardly walk; I was having to carry my arm and I was a l l over to one side, and I couldn't stretch up s t r a i g h t — I didn't feel i l l . Even when I came back minus a shoulder blade, and I got the use back into my arm, more or l e s s — w e l l , I couldn't l i f t i t much after that point, but I was s t i l l around—I s t i l l f e l t a lright, I had pain and discomfort, I wasn't i l l , I was s t i l l able to function. Therefore, how could i t have been so life-threatening? When I had i t up here in my neck with a l l the main arteries and blood vessels and nerves and everything going through to the brain, they sort of sent me home to die off. But I survived that, you see, and that was amazing. I was s t i l l here after a l l that. So how could i t have been cancer? How could i t have been so fatal? The thought that I could have died, probably should have died, was s t i l l rather unreal. The fact that I hadn't only made me feel that everyone else had been wrong. I've never f u l l y accepted the cancer perhaps. It's that the mere fact that I'm s t i l l here proves that i t can't have been that bad!! 11. Redefining problems in a positive light Problems are solved by reframing or redefining the problem and finding something favourable about i t . D. The side-effects of the treatment are not pleasant, but i t ' s s t i l l interesting. Fascinating! Like labour! And the other thing about the body, given half a chance i t w i l l rebuild and mend! F. Because a l l chemotherapy is a matter of experimentation. They try and try to find what for you is the strongest that you can tolerate without k i l l i n g you. It's a race! It's a wonderful race i f you think of i t . M. With the chemotherapy and the radiation I was sick quite a l o t . But I think that's f a i r l y normal. That's something that you can put up with in the short-term, because hopefully in the long-term i t w i l l work out. If you look back on every unpleasant experience in l i f e , i t never seems half as bad later. I'm lucky! I can say that because I've survived and I'm s t i l l feeling alright. And 95 okay, so I get pain and discomfort, but i t ' s not debilitating. I can live with i t . 12. Being able to laugh at yourself Life's d i f f i c u l t i e s are not taken so seriously. You are able to see humour even in the losses brought on by the illn e s s , and look for opportunities to express pleasure instead of pain. D. The [cancer support] meeting is not morbid at a l l . I get a real bang out of going! Some of the things that are said! Did I t e l l you about the man who said one evening—there were a lot of breast patients there—"I don't know why these women make such a fuss over breasts. You know, a f t e r , a l l ! " I said, "Well, i t sure screws up your skinny dipping!" E. And i f you can laugh at yourself. Now, we were in a car accident. At the time I didn't have a hair on my body at a l l . [In the accident my glasses and wig were knocked off.] So I put my glasses on, I put my wig on, and I stepped out of the car. And everybody disappeared, seeing me bald-headed in the car! Well I just roared!! To me i t was funny. F. I always could joke about things. I met a g i r l named Nellie. She had cancer that had spread everywhere. Here was I, about 125 pounds, shuffling along, and here was Nell, as skinny as I was. I said, "Nell, you know that hot t i n roof that Tennesee Williams wrote about? God knows we'd make a lot of ra t t l i n g on that roof with a l l our bones, wouldn't we?" M. I think i f I had lost my sense of humour I would have been lost years and years ago! I could usually see the funny side of anything. I can think of one day, I was walking along, crying my eyes out, I was so upset. When I got in the door a l l I could think of was going to l i e down and have a good old howl. And the phone rang just as I came in. I answered the phone, and I chatted, and when I put down the receiver I went into the bedroom like an ultimatum, really. I looked at the bed, and I said, "What have I come in here for? I'm not crying anymore." Well then I f e l t cheated. Then I laughed. How stupid to feel I was cheated out of a good cry! 13. Being inspired by others who overcome their d i f f i c u l t i e s Other cancer patients show not only that survival is possible, but 96 also that you can go on livin g day to day with a life-threatening condition. You look to these survivors to strengthen your motivation to l i v e , to have more courage and to fight for l i f e . Other patients you meet, not necessarily those with cancer, have suffered even more terrible situations and lived though i t . These people support your stance in maintaining your fighting s p i r i t and determination. 0. Now this other lady, she is absolutely marvellous. She is probably the one [person with cancer] that I think is the best [example] I have ever run into as far as courage goes. E. But seeing D.—a l i v i n g walking person for fifteen years or so that she'd had i t — a n d she'd gotten better, then why couldn't I? [This other woman I know] had three-quarters of her lungs removed. She's out golfing and doing the things that she wants to do now. F. I was often impressed by how the women [cancer patients] handled things—their fortitude, their sense of humour, their a b i l i t y to jusL accept l i f e . Men tend to be different. Men give up more easily. I always thought that the bounce-back a b i l i t y of women was so much stronger than men. M. I think the determination of that old lady—[an 89 year old woman who was determined to walk on her new false leg into her ninetieth birthday party]—and the definite idea of setting a goal within an achievable time frame, were lessons I learned from her which have lasted me a l l my l i f e . [Autobiography] 14. Depending upon support from others Living with cancer creates a high level of stress. You recognize the importance of actively seeking out support or simply accepting the support that is offered. Often this support comes from outside the family, and may be found in cancer self-help groups. E. Everyday you're feeling sick. I could [ s t i l l ] talk on the phone. I took a pencil [when I couldn't use my fingers] and dialed. D. Just having people there that you can talk to helps. When I was in hospital, I relied on Stew completely. 97 F. I got support from others!! That was an amazing thing. Tremendous support. And when I couldn't drive I didn't have any compunction about asking people to drive me somewhere i f they could. But I didn't feel I needed to go out and search for i t because i t was on ray doorstep right away. I had people coming in from my Lodge, from my soccer club, from my recorder society, from neighbours, from family, from my work. I was getting c a l l s a l l the time. "What can I do to help you?" I can't imagine being in isolation and not have this tremendous outpouring of sympathy. And I also think that women are far more supporting to women than men are. And the bonding I think is closer and tighter with women. What I'm suggesting is that women, by bonding together, raise each other. I would think that women do survive when they have cancers the same way that men have. And men do tend to isolate themselves. It could be that we are at fault as men for shielding ourselves. And i t could be that you women realize that another woman is your salvation. And that an emotional bonding can be of enormous help. M. I got a lot of support from ray friends. Without any doubt. I never had any d i f f i c u l t y talking about i t , and they didn't either. I think i f i t hadn't been for so many friends I don't know what I would have done, really. 15. Seeking out meaningful communication There is a sharing of concerns and anxieties, and a willingness to talk about your illness and not hide i t from others. You seek out opportunities to have mutually satisfying conversations, and talk less about things that don't re a l l y matter. D. And they say, "If I don't talk about i t , i t w i l l go away." You know and I know i t doesn't go away. E. And I've been willing to talk about i t , not hide i t , which a lot of people do. F. I've always talked about what I thought was important. I can't make small talk anyway. M. Especially i f I'm on holiday and i t ' s obvious from what I'm wearing that I've got a problem, and they say, "What's happened?" I don't mind talking about i t . I'm not embarrassed. 98 16. Pursuing self-knowledge As you begin thinking about what is really important in l i f e , you are motivated to know yourself better. You become more sel f - r e f l e c t i n g , question decisions you've made in the past, and think of how you might act differently the next time. Some found that writing was another good way to understand their capabilities, feelings and motivations. D. You know, you don't know a l l about yourself, really. How the h e l l can you understand anybody else? I've done things and wondered why in the world would I have done that. E. With any illness—cancer or M.S. or heart disease—the more you know about yourself, the more i t w i l l help you out. And learning how to get along in your personal l i f e . You got to learn how sooner or later. And life-threatening disease w i l l do i t ! You get to review your own l i f e . And i f you're f a l l i n g back into the same old trap i t pulls you back out! You bitch about l i t t l e things and you know you need to change. There's no reason to bitch. F. I made writings during the time I was i l l . I had always kept a diary for years and years. I glean from diaries. We're the greatest analysts of our psyches! I find myself becoming more contemplative, more introverted. I remember when I f i r s t got the cancer. I was having a real bad time at work. And i t transpired that the probability is that I had a duodenal ulcer then. Over the three years up to the time that these internal problems were happening, they suspected that this turned into cancer. Without the stress the ulcer would probably not have progressed to anything. M. The group therapy started opening things up for me. When I was in that hospital and I just had to talk and talk and talk. Talk i t out. And then I went to nightschool at B.C.I.T. and I took psychology courses. That was the absolute enlightenment of my l i f e ! That was very significant. I sat there in the class and you list e n to these theories and i t was just like seeing myself in a lot of the situations. Especially in work situations. And then writing my book got me to look at a lot of things I hadn't looked at before. 17. Learning to manage stress You become more self-motivated and learn how to change situations 99 to ease the stress level and feel better for i t . An active stance is taken is solving problems. D. Sometimes when something is worrying you, you'll try different methods to put i t out of your mind. Oh, a few months ago I was upset worrying about my youngest daugther, and i t took me about three days of fussing before I was able to say to myself, "This is re a l l y not my problem. This is her problem." It surprised me that i t took me three days to do i t , to resolve i t . E. I had to learn how to handle stress. I remember f a l l i n g to pieces once, and I phoned up the health c l i n i c on Pine St. I told them I needed help. There was a bunch of social workers there. And I spent the whole day with them, listening to other people's problems, and mine didn't seem quite so bad! A lot of people had a lot of worse problems than mine! I learned that hearing other people's problems could halve my own!! F. I don't get into stressful situations any longer. That's one thing that I've learned very strongly. Avoid stress. Not because stress in i t s e l f is dangerous, but because i t ' s so much easier and i t ' s so much more effective to avoid stress. The stressful person never wins. M. How I managed stress earlier was just to avoid confrontation because i t was very d i f f i c u l t for me to stand up for myself. It was a rare occasion in my l i f e for me to stand up for myself. But I started doing i t more and more. I started to stand up for myself about smoking in the classrooms or meeting rooms at work. I couldn't breathe because of my medical complications. It took me so long to learn how to manage stress better. I'm a slow learner in some ways. 18. Finding creative solutions to problems You are open to new p o s s i b i l i t i e s and see solutions that previously would not have been considered. Feasible alternatives are negotiated when d i f f i c u l t i e s are encountered. D. When I couldn't do the lapidary my husband got me doing [silversmithing]. And then, when that got to be too d i f f i c u l t , I did a lot of leatherwork. And then scrimshaw. [And then] I made my own clothes. Because before with the bandages and the arm so big, I learned an awful lot about designing, because whatever f i t me here didn't f i t me anywhere else. 100 E. And my own granddaughter, she was 16 at the time, she said to her mom, "If grandma is in pain, t e l l her to get some marijuana and smoke i t . " I told my doctor what my granddaughter had said and he said, "If you want marijuana just go down to the ladies' restroom." They couldn't t e l l me to go and do this, but they told me where I could find i t . F. I l e f t a l l the major decisions up to Ann [my wife]. I don't do that now because she won't let me, and I didn't do i t before. Now she'll say, "No, that's not good enough. We have to come to a joint decision." So, I was shielded from a lot of problems. And i t r e a lly was a revelation for my wife. It helped her become far more assertive. M. I can't think of any goal that I didn't actually achieve. If i t didn't work one way, i t worked another. I figured out a different way around i t . Like hanging clothes on the line with one arm! I hold doors open with my feet and my rear end! I put light switches on with my nose or my chin!! 19. Setting short-term evolving goals You begin to cope more efectively by setting concrete, time-limited goals that keep evolving. D. But one thing [my husband] started 20 years ago. He takes me out to dinner every week. And I look forward to that. It's very important to have a goal. It doesn't matter whether you ever make i t . But to have a goal, and something to look forward to, is very important. E. When my boys' father died a l l I was thinking of was my boys. A l l I asked when I had my f i r s t big operation was that I could live to see my kids grown up. They're grown up! They're married! Now to see the great-grandchildren grow! But I don't plan my l i f e around that. F. And though i t may seem impractical, give the poor sufferer the prospect that he's got something to live for. "Live for today" is what you always hear. But don't we live for birthdays and weddings and anniversaries? "Live for the future" is what I think. Survival in i t s e l f becomes almost a motivation to l i v e . Think of those things you were going to do. Focus on that t r i p we were going to take, that new house we were going to do. We do live for the future. We always do. We live for the great things. Isn't there an old saying, "The anticipation is better than the realization"? 101 M. I began making goals for myself, and as soon as one was accomplished I set another--mileposts in my l i f e to be reached, conquered or enjoyed; such as a course to be completed, or a holiday. I kept making shorter-term plans so that I had something to look forward to, such as a special outing, a movie, or going out to dinner. Without consciously recognizing i t then, I was starting to give myself more reasons to live again... [Autobiography] It gave me something to look forward to. Even when things kind of went a bit wrong I would always come back and go straight ahead because I got this goal, this sort of shining light at the end of the tunnel that I'd got to reach. [Interview] 20. Learning to compensate There is an acknowledgement that you don't always get what you think you deserve in l i f e , and that happiness li e s in accepting what is.. You learn to accept unexpected compensations. D. This is what I t e l l people about cancer: "There's compensation. You give up this, but you get that. And you may not think i t ' s quite as nice as what you gave up, but you're s t i l l getting something out of l i f e . " F. But you compensate. We have a marvellous way of compensating. I think my survival is part of that. I think you can always accentuate the prospect that i f you're not well enough to go back to work, we're in good shape. You can always be in good shape. M. Over the years I've discovered that out of any disaster there always comes some compensation... [Autobiography] A l l is not bad because you've got cancer. You may meet new friends, new things might happen to you, you can widen your horizons, your children may become more caring, your husband may realize how much he cares for you, i t may bring you closer together, you'll start to do things that you never would have done before. [Interview] 21. Becoming more adaptable and accepting You learn to become more adaptable and accepting of situations. D. I have had to give up a whole lot since I got cancer, but I've also gained some other things that f i l l that void. It's not the worst thing that can happen to you in l i f e . 102 E. You got to be thinking o£ others rather than yourself a l l the time. You got to let go of thinking about cancer. It's not the most important thing in your l i f e . Everytime you got sick, you don't think, "Oh, i t ' s back. I'm going to die." You're l i v i n g , not dying. F. I was impressed by the need to accept l i f e ' s fate. Women have this greater resource. I think a lot of the problem with survival is that the sheer shock of knowledge of this could k i l l you. This is how i t ' s going to be, and the quicker we can come to terms with i t , the happier we w i l l be. And I'm much happier. I had to resolve this and recognize i t myself. You have much greater peace with yourself i f this happens. M. I had to change a lot of the things that I wanted to do. I had to change my attitude because I wasn't able to do what I always wanted to do. I had to adjust to making the most of a career that I hadn't wanted to do. I had to adjust to being on my own instead of being married and bringing up children like a l l my friends were. I made the best that I could of i t , and enjoyed as much of i t as I could. 22. Accepting death There is an acceptance of your own pain, i l l n e s s , suffering and the pos s i b i l i t y of dying from this i l l n e s s . You are able to let go of regrets and se l f - p i t y . D. When I f i r s t found the cancer I said, "I'm 52 years old. I've had a damn good l i f e ! " I didn't think, why me? Because I f e l t why should another poor bugger have i t and not me? And most people think everybody else dies but them. I thought, well, i f this is i t , thank God my children are just about grown up. I've accepted that I've got cancer and i t could k i l l me, and I find that I relax more from accepting i t . I think about death a lot, but I enjoy each day so i f I die tomorrow, i t ' s not so horrible. I don't feel cheated. If a person can s t i l l get a l i t t l e kick out of l i f e , hang in there! I want to hang in there to the end. This is an experience! Death is an experience, just the same as being born is an experience. E. [I've] had a good l i f e . And a long l i f e . And of course we hate to say that this is i t . If I went tomorrow I wouldn't be sorry. I'm doing now what I want to be doing. The odds are that you got to go sometime. I never thought of my own mortality before. Even at 60 [when I was diagnosed], I wasn't ready to die. "I'm not 103 going to die!!" It was such a shock. Even though i t was through the family. Now, the thought of dying is always in the back of your mind. But you plan for the future as i f you're going to be here. F. I found myself contemplating i f I was going to die whether i t would be a l l bad. I would compare the negatives of l i v i n g to the positives of death. Thinking i t ' s not such a good l i f e after a l l . Life is f u l l of t o i l and care. And I don't believe neccesarily that there's a better l i f e to come. I found myself purposely making something positive about the prospect of death, and reducing the positive about the prospect of l i v i n g . A l l is not black and white. It could be a r e l i e f ! This helped me an awful l o t . I convinced myself that dying is not a l l negative. Although I didn't feel I was going to die, I recognised the good strong prospect that I would, and I softened the odds. But I s t i l l deep down didn't feel I was going to die. You accept the pos s i b i l i t y , the probability, the i n e v i t a b i l i t y of dying. But I always thought I was going to dodge the bullet from this one. M. But whatever the future may hold, I know that I have had a very f u l l l i f e — w h i c h has been extended by at least thirty years more than the medical profession expected. 23. Enjoying l i f e f u l l y There is the conviction that l i f e is to be enjoyed. You create more joy and happiness in l i f e , and pursue whatever you think w i l l bring happiness. D. I ' l l t e l l you a l i t t l e story about the farmer who had a barrel of apples. And one was going rotten, so he ate that one. And the next day there was another one going rotten. And he ate that one. At the end of the barrel he'd eaten a whole barrel of rotten apples! And I said [to this woman who had cancer], "Why don't you go out and have some fun?" E. A lot of people when they f i r s t come in, they're down in the dumps, which is only natural. They've just found out they have cancer. After they've been there [at the cancer support meetings] coming regular for a l i t t l e while, they're laughing and joking. Sure i t ' s bothering [you] but [you] can joke and fool around and everything else. Happiness is more important than anything else. F. I was going to retire at 60, and this thing happened at 54. Suddenly I'm there, and in very reduced physical circumstances with reduced prospects. And now I've gone a step beyond. Now we're 104 saying, "Hey! Now's the time to really l i v e ! ! Let's take our trips! Let's do a l l these things!" And i t ' s more enjoyable to have the acclaim of your fellows, having survived. More enjoyable to have the admiration of people who expressed how they f e l t : "Jesus i t ' s great to have you back! Won't i t be great when we can do so-and-so?" M. If you feel good today don't worry about tomorrow. Get out there and make the most of today. [Autobiography] 24. Defining your beliefs about survival There is an investigation of the s p i r i t u a l or rational beliefs that guide your l i f e . These beliefs are defined and crystallized into an explanation for why you are s t i l l l i v i n g . D. I can watch a flower grow from a seed, and wither and die, and i f that's a l l there i s , that's fine. I'm afraid you can't c a l l me a believer. I guess I'm a b i t from Missouri. I know what there is here, and I don't know i f there is something there [in heaven]. E. I believe there is a Supreme Being and He is the only one that knows when you're going to die. We're not church people, but there is a belief there. And He must have more work for me or I would have been gone. F. This is a doctor in whom I have fai t h ; I am a person in need; people do survive; why shouldn't I be one of those survivors? So when he told me I had stomach cancer, the f i r s t thing I asked him was, "How are you going to solve i t for me?" I knew doctors would help me. We're a l l problem-solvers in that way. We a l l answer a need of somebody else. M. I am more certain than ever that some higher Power has been looking after me. How many times did I ask myself why God had kept me around? I wasn't very religious but a small voice in the far recesses of my mind kept t e l l i n g me that I must have been saved for some reason, and I must try to find out what i t was. [Autobiography] There was some inner power that was giving me the strength to survive believing that things would get better, and that i t was worthwhile continuing and trying to struggle and keep on. [Interview] 105 25. Questioning old values and setting new pr i o r i t i e s In finding what is true for yourself, many old habits and routines and values are no longer meaningful. As p r i o r i t i e s change, you act in new ways. D. And when I f i r s t got cancer my mother wanted me to come back. So I thought, by God, I'm going to get back to Nova Scotia! Now, a year after my cancer I went back. I've been back a few times since then. I've been to Hawaii. I've been down to California a few times. What I'm trying to say is that thing I hadn't done was important to do, and after I'd done that, these things weren't so important anymore. But i f you've got something that's been gnawing at you that you haven't done that you feel you should have done, get i t done! That's important!! E. You s i t there and go through your l i f e . "What have I done with it? What do I want to do with it? What am I going to do with i t ? " So you've got to think, i f I died tomorrow, what's going to happen? If I live five years, i f I live ten years, what do I want done? So you redefine your l i f e . Do you want to carry on the same way, or do you want to do i t differently? Since then I've taken to crafts. To he l l with the housework! I ' l l get i t done. When my kids were growing up you could eat off the floors. When my great-grandchild comes his knees may be dirt y from crawling around on the floor, but I'm not worried. If i t don't get done i t don't get done. And I do my crafts instead. My husband's going to retire [early] so that we can travel. We look ahead. And since both of us have been sick this is what we have been doing. Because we got to think of enjoying the rest of our li v e s . F. Most of us are hooked into the necessity for working. We're s t i l l somehow committed to this prospect that people are sent on this earth to t o i l and labour. You work to achieve the greatest monetary advantage as well as to achieve the highest personal advantage. I can't work any longer. But I can work in the garden. I can walk. I can go on Caribbean cruises. We aren't pressed financially. We might as well try and do the things that we've put off doing. Spend the money that we've never spent before. Forget worrying about our old age and not having enough to live on. Do things now instead of always being concerned with whether i t ' s the right thing to do. We did change. We did readjust our thinking. Shall we do things now or later? Shall we do them at a l l ? Now we say, "Now is the future!" Having cancer pushed me into early retirement and a l l that this involves. 106 M. People get really hung up on cleaning the house! And I realize that I used to. I used to get really hung up on things that didn't really matter. Now I do a lot of impetuous things that I'd never done before. I guess my character sort of started to change. In a way I'd been very conservative and backward, and and everything had to be done just sort of to a pattern, or to a routine. [My husband and I] now do an awful lot of spontaneous things, which is a lot more fun. 26. Having a clear purpose in l i f e You determine your purpose in surviving. You experience an increased purpose in l i f e . D. As long as you're enjoying l i f e , that's the main thing. E. There is some purpose to s t i l l being here. There's always a reason. [For me, i t ' s ] to help other people. How long He's wanting me to do i t , I don't know. But I'm going to help others as long as I'm l i v i n g . F. I think I wanted to survive. My boy had just gotten married. They wanted children. I wanted to survive to see a grandchild. And when the grandchild was born, I wanted to survive long enough for that grandchild to remember me. This is our immortality coming up. You and I aren't immortal. Our memory is not immortal. And i f there is a God up there and i f there is a paradise up there, that's good, but sometimes I have my grave doubts. I think our immortality is what we leave, our influence in what we leave in memories, the things we do, for good or bad. M. The whole purpose of l i f e is to live i t . To reach out, to experience as much as possible, to love more, to touch more, feel more, enjoy more, even to hate more and feel anger. [Autobiography] Do things while you can, while you're s t i l l able. Don't put i t off. Don't wait until you can afford i t . Or you're retired. Because by then, who knows? You could have had a heart attack and be six feet under. [Interview] 27. Perceiving d i f f i c u l t i e s as a challenge to surmount Obstacles are perceived as a challenge. There is the feeling of gaining strength from adversity, and that d i f f i c u l t i e s make you a stronger and better person. 107 D. Most people who take i t well have had obstacles that they surmounted. I think I've learned more from failures than I ever learned from winning. Once you find that you can surmount that failure, you gain a l i t t l e confidence in yourself. There is nothing wrong with failure. You should learn that you can't always do things. E. My fingers a l l peeled. I couldn't hold my coffee cup except with two hands. (My husband] had to cut up my food or mash i t . And these sort of things, as far as I'm concerned, are a challenge. It was a challenge to figure out how I could do these things and be independent. F. And I don't think that the buffets and the pounding of l i f e which most of us go through, especially emotionally, they don't hurt us and they don't worry us as much as they do people who have been closeted and carefully protected. And I have a feeling that this is what helped me. I think my background of deprivation probably was a good thing. I tend to attack challenges with the object of surmounting them, and usually do. M. I started with i t so young. I've lived with i t for so long. I've re a l l y forgotten what i t was like to do i t any different. I find myself doing s i l l y things like opening doors for people i f they're carrying things [even though I've only got one good arm]. 28. Learning from having cancer You find meaning in suffering and struggle, and can see the illness as a teacher and an opportunity rather than a curse. Some feel much richer for the experience, while others simply embrace i t . D. I have learned a lot from having cancer, because you learn even from pain. You learn! But i t ' s not pleasant. I don't feel I'm a better person because I've had cancer. E. My husband and I have both had sicknesses. We've both had a rough l i f e . [These struggles have made me] more understanding. A stronger person. I ' l l stick to my convictions. You're more thoughtful, thinking of other people. Cancer taught me how to be more alive. F. I can say that I'm a richer person for having had cancer. It's been an interesting experience, not an overwhelming one. There's got to be some good coming out of everything. In a way I'm lucky to have experienced this. I wouldn't have the joy of recovery, the 108 achievement of recovering. I wouldn't have appreciated what other people have done. M. I'm not sorry that I had [cancer] in a lot of ways. I mean, obviously anybody would rather have a healthy l i f e . [Interview]... I am sure that I have done more with my l i f e — s e e n more, achieved more, travelled more, acquired so many wonderful friends en route— than I would ever have done had I not had cancer. For that perhaps I should thank cancer for having come into my l i f e . [Autobiography] 29. Having a sense of gratitude and appreciation for l i f e There is the sense of being lucky and thankful to be alive even in the midst of d i f f i c u l t i e s . You experience something precious in l i v i n g that you had not f e l t in the same way before. D. But the thing you have to learn having cancer is that—and even you who are probably very h e a l t h y — i t ' s something that everybody has to do, is to take one day at a time. Because you could get hit by a bloody truck or something and that would be the end of you anyway. So i f you're breathing today be happy for that! E. We got to think of enjoying the rest of our liv e s . I'm doing now what I want to be doing. Not s i t t i n g here waiting for Nick to retire maybe in five more years! We might not be here in five years. Either one of us! We might as well do what we want. I'm glad to be alive! Everything else is a bonus. F. Survival in i t s e l f becomes almost a motivation to l i v e . I say to myself, "I've got a l i f e to l i v e . Life is worth li v i n g when i t goes on." And there is a silve r lining to l i f e . It's not always going to be t r a v a i l . Life is something to be engaged in! Time is more precious. M. I think when a lot of people have gone through certain things which are very d i f f i c u l t , a lot of suffering, they become rather different types of people. A lot of them have a much greater appreciation for l i f e . They appreciate what they've got. Life i t s e l f . There has been a great deal of suffering but there has also been a tremendous amount of happiness which I can appreciate a l l the more. God has not forsaken me. I am s t i l l alive, and what a wonderful world i t is that I have been privileged to remain in! To me there is so much beauty to see in the world. 109 30. Being able to express feelings f u l l y A more diverse and intense expression of feeling is developed. For some, this means learning to let out emotional tension and co n f l i c t s , and verbalizing feelings of anger, fear, doubt, frustration, regret and resentment. D. I didn't have to have a radical. And they discovered that removing the pectoral muscle didn't help one bloody b i t . I said, "If only.." Now, i f - i t i s is a waste of time. But I had to find out you see. In fact, feeling sorry for yourself is a total waste of time. It wouldn't be so bad i f you f e l t good while you're doing i t , but you don't. I think I express my feelings better. Perhaps I'm not as self-conscious as I was when I was young. E. You like somebody, or you love somebody, but you don't go around saying i t . Now, i f I run into somebody I know, I hug them, whereas I wouldn't have before. I'd be a l i t t l e standoffish. And now, who knows i f I'm ever going to see them again? I've learned to t e l l people that I love them, and I'm really glad to see them! Like even with my l i t t l e great-grandson, h e ' l l come in and say h i , and now I say to him, "Have you got a kiss for me?" And so he comes right over and hugs me. Whereas before I wouldn't have said anything. You learn to express yourself. Too bad we can't learn ahead of time. And now, i f somebody is doing something that bugs me, I'm not afraid to say, "Well, cut i t out!" F. Oh, [my wife and I] y e l l and scrap like the devil, but i t ' s r e a l l y kind of safety-valve releases. I'm not shy to say how I feel. M. But ever since [the last recurrence] I have tended to become i r r i t a b l e , and I never used to be i r r i t a b l e ever. I never knew I had a temper. I never knew I was capable of violent feelings. I didn't express feelings of anger or frustration or hurt. I kept a lot of that to myself. Even at work I was afraid to let other people see that I was i r r i t a t e d or angry or that I wasn't pleased with them. That came later. I learned a lot when I went to that group therapy session after I had a sort of breakdown. To shout and scream and do what you wanted. Don't bottle i t a l l up! 31. Asserting yourself You assert your being in the world by taking a stance, standing up for yourself, and verbalizing opinions and passions that need to be 110 expressed. D. As a young g i r l I was very shy and didn't talk out. And as you get older you learn not to worry whether people like what you say. Age helps. Now I get very adamant about the Cancer Society. I see faults. I'm concerned for the patient. So I bitch about that. Yes, I speak up for myself! E. I have to cut [my husband) down to size once in awhile, because I've built him up so much. Before [having cancer] I'd have sat there and taken [his domineering behaviour]. F. There was one time I was not expected to survive. I was on chemical feeding. Five l i t t l e pots of chemicals for every meal un t i l I came to the conclusion that I was never going to survive on that stuff, and the only way I could force things was not to take them. So for three days they kept p i l i n g up, and I hadn't eaten now, I'd only drunk water. On Monday I told the doctor, "I'm going to die taking that stuff! I think you're on the wrong track. I w i l l die before I take any more of i t , so you might as well know that." He said, "I'm glad you've given me some direction to take." And he phoned my wife and said, "Come and pick him up." I was home that night. That's when my weight was down to 117 pounds. Refusing that stuff made me feel quite good, like I was master of my own fate. I knew that i t wouldn't work! M. I'd rather have cancer than be blind. And I certainly wouldn't want to be a quadriplegic or paraplegic, or brain-damaged, or retarded. I'd rather be dead. I don't want to live any longer than when I'm capable of surviving the way I am now. I would hope I would have the strength to take every p i l l I've got stashed up in the event that anything should happen. I feel that when your time has come, when God has called, I think you should go. 32. Expressing your independence You identify your own needs and and pursue your own interests rather than adjust to the expectations of others. You become se l f - r e l i a n t , autonomous and self-governed. D. I've always been independent from the time I was born! E. [Before] I'd have given up the holiday for the kids. But not anymore. They've got their l i f e . They've got their friends. They don't worry about what I'm doing. So i t was family which my l i f e I l l had revolved about before the cancer. Now we spread our wings and do what we want to do. Now i t ' s for our own fun. F. And I do believe [some] people are survivors. If you have people that are s e l f - r e l i a n t , and through training or necessity become se l f - r e l i a n t in more ways than physically, emotionally, perhaps, that they can get along well on their own—what i f you didn't have the same inner resources? What i f you were to t a l l y dependent on your partner, as lots of people are? Totally dependent emotionally. What i f this awful trauma hit you at this time? M. I learned that I could live on my own, with my own company. I'd always shared with somebody. Fi r s t of a l l for financial reasons, and also because I didn't like being alone. Then I got to the point where I didn't have to have a roommate. I'd been able to overcome so many d i f f i c u l t i e s that I'd had. And I was a lot more successful at work, I was a lot more confident in myself, I was happier. I learned that the most important person in your l i f e is you. You are responsible for your own happiness. You can't depend on other people for i t . 33. Developing more caring and satisfying relationships Significant relationships are deepened, marriage is strengthened, and friendships become more meaningful and supportive. D. My husband, no matter what kind of an ass I'd make of myself, he always stood behind me, and that gave me a great deal of confidence. E. [When I was sick, my husband] was hovering over me. But then he had the heart attack. So then I turned and was thinking of him. It just brought us closer in a lot of ways. F. I think there is one other factor which is very important: my wife is very tolerant of me. Very supportive. And I think i f you have that buttressing at a time like that--I don't know i f you're actually conscious of i t , but i f you don't have i t , then you'd be very conscious of the cost. My wife and I have known each other for forty years. And we got married in 1953. We've been married now 36 years. And we're so lucky in that way, we're pretty stable. I've never had a family problem. It's an oasis for me to come home to. I think your relationships with people and with family get better. I am very conscious that people are more important [than they were to me before.] 112 M. Patients need to have some motivation to live and not just give up. I, personally, feel that the strongest motivator is to have a warm, close relationship, to know that someone cares. My friendships have a l l been deepened. I r e a l l y value the friendship perhaps more because they always stood by me, whatever kind of problems I had. They're not just surface friendships. They have meant more to me than anything. 3 4 . Helping others in need You develop greater compassion for people and the desire to provide service. D. I think one of the biggest joys in l i f e is going to the "Living with Cancer" meeting and jo l l y i n g everybody up. I really get a kick out of doing that. E. I guess that would be the best lesson: that you give of yourself more and not try to take for yourself. F. When I was quite sick in the ward our floor didn't have a microwave to boil up a cup of tea. I swore when I was out that I would go into my company and get f i f t y cents from everybody to buy one. Lots of people wanted to give me f i f t y dollars and lots wanted to give me five dollars. I didn't want five dollars or f i f t y dollars. I wanted f i f t y cents! I could say, "This is from Johnson Terminal." And I collected five hundred dollars. This gave me a tremendous sense of purpose. M. There is another volunteer a c t i v i t y which keeps me busy and makes me feel that I am f i n a l l y contributing to this world. Perhaps these are some of the reasons the Lord has kept me around. I became involved with teaching new Canadian students English as a second language. [Autobiography]... If you know that what you are doing is bearing some f r u i t or somebody is really appreciating i t , you're helping them or they're getting something out of i t , you want to do more for them. [Interview] 3 5 . Inspiring others You identify yourself as a survivor and an example not only to others with cancer, but to everyone who could benefit from hearing a story of hope and success. You have a strong sense of mission, and you 113 become soci a l l y and p o l i t i c a l l y active in cancer support groups and projects which w i l l improve the lives of other cancer patients. D. We've got to teach people about cancer, so they won't be so scared when they get i t . By showing people that you can cope, i f they could see that I could cope—and I'm s t i l l l i v i n g — t h e n this would save a lot of anxiety. Self-help groups are very important. E. And when I went into the waiting room I said to them, "I was in your shoes about seven years ago. But behind every cloud there is a rainbow, and here's one for you to get better with." So these sort of l i t t l e things help them a l l . And before I l e f t that room they were a l l talking to each other and smiling because I had been  there before them! Learning a l l the different things that w i l l help people makes the biggest difference in the world! To try and make them realize that cancer isn't f a t a l . F. As soon as I knew somebody with cancer, I would get on the phone of my own accord. And people would refer others to me, because I'd say, "If you know of somebody in the same circumstances that I'm in, for Pete's sake, put them in touch with me!" I'm quite happy to be pointed out as a survivor. I'm happy i f somebody can l i s t e n to my story and gain something from i t . I think i t ' s v i t a l l y important that not just cancer sufferers be told about my story. Now i t ' s one in four Canadians who w i l l have cancer sometime in their l i v e s . So i t ' s just as important that every member of the population knows that there is l i f e after cancer, knows that there is help. I get up in churches and I say this. I get up in social groups and I say thi s . "I'm a survivor!" And that's very important. I think talking to others is the greatest thing that I can possibly do! I'm l i v i n g proof! M. I think i t ' s absolutely wonderful to be able to talk to and help people who have got problems and fears that I didn't have—realize the problems that they've got and what they're going through and try to help. They're really appreciative when they talk to you. And I have been feeling especially since I got on to this last section of the book, that maybe this i s - - t h i s is the sort of thing that I'm here to do. And i f indeed my story does become an inspiration or a help to even one other person perhaps that might be the elusive reason why, against so many odds, God has kept me alive. 36. Enlarging your sense of community You experience a greater feeling of connectedness to other people and to humanity. There is the sense of belonging in the world, and 114 that the world is an extension of yourself. You have an increased concern for the environment and the welfare of others. D. I never used to be interested much in p o l i t i c s , but right now I'm rooting for the Indians. Mulroney trying to s l i p this Meech Lake thing under the table. And Russia, look at the changes that have gone on there! Things are happening in this world right now! E. Before i t was more—family. Now i t ' s the world. This is the difference. We're willing to go out, instead of just the two of us walking down the road hand in hand, and doing just the things with our family and relations. Now there's a bigger world out there. F. I'm more dependent upon doctors. I'm more dependent upon people to help me with things mainly, for physical reasons. And I do have the time now and the opportunity to be more involved with people. M. People who have suffered are more caring about other people. They're much more aware of other people. 37. Appreciating your uniqueness You accept yourself for who you are and value this uniqueness. You become more non-conforming. D. And now, at this ripe old age, I don't care whether anybody likes me or not! You see, i t doesn't matter! E. The main lesson that you learn is that l i f e is important. Not money, not homes. You are yourself instead of trying to keep up with the Jones'. F. What I say may be total garbage for anybody else but me. Out of the five b i l l i o n people on this earth, I am unique, and what I say could be unique as well. M. I used to do things and say things and behave a lot on the basis of being what other people would think of me. And I started to be more open and speak up for myself, which I had never done, without worrying about whether people were going to like me a l l the time. And then I realized that i t was quite okay not to like somebody and for somebody not to like me. 38. Having a richer and more meaningful l i f e 115 Life is experienced as f u l l , rich and meaningful. You discover your dream and live i t with passion. D. Like when my father died, three weeks before he died there was a family reunion, and he enjoyed himself to the end. And he bought a TV that he never got to see. Because by the time i t was delivered he was dead. That's l i v i n g , eh? _ don't want to miss anything. But, you see, even i f you lived to 130, you're s t i l l going to miss something, so i t re a l l y doesn't make a l l that much difference. But, being greedy, you want a l l you can get! E. Once you get over the shock of cancer and your treatment, then you live every day for what you want to do. You're not dead, you're l i v i n g . You got to enjoy your l i f e . Now we spread our wings and do what we want to do. We both like travelling. Now we never stay at home anymore! We're more involved in pleasure than in getting ahead. The almighty dollar don't mean that much to either of us. F. Regardless of my [health] restrictions now, I do more. I appreciate the greater fullness of l i f e . I love c l a s s i c a l music, and now I l i s t e n to two major symphonic works a day, at least. I can liste n to six hours of symphonic music. I read poetry, and I do the things that I always had wanted to do before. M. Do as much with your l i f e as possible. In fact, do more because you have cancer than you would have done without i t . Hopefully you'll be lucky and conquer your cancer, but i f not, a l l the more reason to get as much out of your l i f e as you can while you are s t i l l able to. Since my most recent brush with death, I had ever so slowly started to develop a different a t t i t u d e — a case of do i t  now! I should live every year as much as I could, just in case there wasn't going to be another one. And instead of putting things off, I should do them now. Do as much as you can for as long as you're able. What would you like to do with the rest of your l i f e , however much of i t you've got left? What would you really, really want to do, and why haven't you done it? And what's stopping you doing it? And then go ahead and do i t . Phenomenological Description The process of surviving a life-threatening disease and being transformed by i t is a s p i r i t u a l journey set in motion by the threat of death. 116 The f i r s t stage of this journey is the c a l l to change. The diagnosis of terminal or life-threatening cancer brings people face to face with death. This c r i s i s marks the beginning of the journey. As death becomes imminent people are forced to change i f they are to go on l i v i n g . They must have the sense that their fate can be different. The threat of death is the c a l l to begin l i v i n g l i f e in a different way. It is a c a l l to begin investigating l i f e . The investigation begins by taking an active and fearless stance, much like a warrior going to battle. Survivors have a conviction about their own survival and healing: they believe they are going to l i v e , and expect that they are going to live despite what they are told, and deupile the many others they know who have died of cancer. In refusing to accept an untimely death the w i l l to live is reinforced. This decision to live is a distinct turning point. Often this turning point is the experience of what is valued in l i f e — a loving huabund and caring children, the beauty in nature, the desire to see more of the world and experience more of l i f e . There is the sense of being at the junction of Life and Death, and deciding to go on and choose l i f e . For some people there is a crucial interaction with another that helps activate the w i l l to l i v e . This other person may be a cancer survivor who can show that survival is possible, and that i t requires tremendous w i l l and fortitude and tenacity. Survivors begin to take responsibility for their own healing process. They seek out professional information and direction about their condition that w i l l arm them with the facts that they need to 117 fight the battle. For someone with terminal cancer, the situation is that there are no cures and few alternatives offered by traditional medicine. With such limited advice, direction and hope from experts they realize that their fate is in their own hands. This awareness throws them back upon themselves—to seek some inner guidance, to take chances, to reach for any p o s s i b i l i t y . The second stage of the journey marks the beginning of change and new l i f e . The habitual ways of seeing and relating to themselves and the world begin to change. To be a survivor of cancer and to go on l i v i n g people must develop a fighting s p i r i t . Obstacles are encountered that they learn to overcome by clearly focusing on the goal, becoming determined and tenacious, and refusing to give up as things become d i f f i c u l t . Survivors learn to take more risks because there are no promises and no guarantees. The old ways of solving problems are not viable solutions any longer. They are now in unknown territ o r y . There are no maps. Survivors need to break away from routine and become more intuitive and spontaneous in order to make important decisions. They ask themselves, "What treatment w i l l be most helpful? What is the most important thing for me to be doing right now?" An attitude of hope and optimism accompanies the desire to l i v e . Survivors begin by anticipating the best possible outcome of treatment. Soon a l l d i f f i c u l t situations are met with a positive attitude. Of course they are discouraged at times, and negative thoughts are acknowledged and allowed. Yet they do not predominate and they do not 118 colour expectations. An attitude of curiousity is cultivated. In li v i n g with a l i f e -threatening illness, people are much more aware that the future is unknown. Instead of dreading that future, they remain open and excited about i t , as i f l i f e was an adventure. Their own lives become a compelling adventure, and they learn to begin l i v i n g day by day. To take up that s p i r i t of adventure means to face their fears: fear of loss, fear of pain and suffering, fear of death. People cannot be adventurers without encountering danger and facing their fears. One person observed that women seemed better able to face the fear associated with cancer because they live with more fear throughout l i f e , and need more fortitude and stronger inner resources in order to survive. Yet there is a balance between confronting fears and placing too much emphasis on them. In facing the fear of death, survivors learn not to become obsessed with the thought of dying, but get the most of what they can from each day of l i f e . They expect the unexpected, and allow for miracles. In li v i n g day to day with cancer i t is helpful to learn ways to place i t in the background rather than give i t a central focus. Survivors learn how to distance their problems, and redirect their thoughts away from their own d i f f i c u l t i e s . This softens the impact of having cancer. What becomes central in l i f e is their aliveness, and not the p o s s i b i l i t y of dying. One woman finds i t is so incredible that she has lived 35 years with a disease that should have k i l l e d her long ago that sometimes she simply denies having cancer at a l l . To be r e a l i s t i c , from a s t r i c t l y 119 medical viewpoint, would mean believing in her death; to remain optimistic is to deny this r e a l i t y at times. She is aware that this is a coping strategy, and that she is distorting r e a l i t y for the moment. Denial and minimization remain adaptive when they temper the impact of the problem without hindering people's a b i l i t y to s t i l l feel and deeply experience i t . Other cancer survivors never deny the fact or consequences of their illness and, instead, may minimize their concerns by mukiny positive comparisons with others who are worse off than they are. In focusing on others instead of themselves, they begin to empathize with the struggles of others, and become more understanding and caring. Yet another coping stategy, which also helps to change how the world is perceived, is to redefine problems in a positive l i g h t . This allows survivors to be unburdened by the many small d i f f i c u l t i e s with which they are faced. This reframing helps especially in coping with the problems caused by surgery and cancer treatment. These side-effects of treatment assault the body so harshly that i t is necessary to change the old way of identifying with the body. Survivors develop a good sense of humour—sometimes an outrageous sense of humour—look for amusement even in painful situations, and learn to laugh at themselves. While they take their own lives more seriously, at the same time they leum Lo Lake l i f e ' s d i f f i c u l t i e s less seriously. Being able to laugh brings joy and diffuses the suffering. In the daily struggle of l i v i n g with cancer, other people who have overcome their d i f f i c u l t i e s become an inspiration. At times these are 120 cancer patients who are a model of courage and determination, and who show that survival is indeed possible. At other times, models are fellow patients who don't have cancer, or people encountered in group therapy who suffer even more terrible situations and live through i t in a remarkable way. Those individuals who were diagnosed long before there were LsuppoiL (jzoupu didn't know other survivors and they didn't know how other people coped with the same problems. They recognize how helpful i t would have been to have known others in a similar situation, and now actively promote the importance of self-help support groups. Yet they acknowledge that no amount of encouragement, support or inspiration from others can replace their own desire and expectation of l i v i n g . Survivors recognize the importance of support from others during this time of recovery. They identify the love and support of family and friendu during this period of c r i s i s and transition as essential to their survival. They become willing to share their anxieties about having cancer, and may reach out to cancer self-help groups and people outside the family c i r c l e . As they begin to identify with other survivors, there is the sense of being less alienated from humanity. There is a tremendous feeling of support and closeness that arises in bondirnj with others who are going through similar struggles. Survivors look for opportunities to have meaningful conversations with others. It is as i f the l i t t l e things in l i f e don't matter as much, and what is important is given more attention. They chat and gossip less, and talk more about the things that they are interested, concerned and passionate about. Survivors are willing to talk about 121 their illness and how their lives have become richer and more meaningful as a result of having cancer. What is essential in l i f e emerges; what is t r i v i a l fades into the background. In order to discover what is essential in l i f e survivors become motivated to know themselves better. They begin to investigate their character and develop insight into their behaviour. They try to understand the choices that they have made in l i f e , and how these decisions have contributed to their happiness or dis-ease. Many survivors begin a l i f e review, and reflect on what is important in l i f e . A personal journal may be used to learn about oneself through se l f - r e f l e c t i o n . For some, this investigation begins by reviewing the stresses that may have predisposed them to contracting cancer. They learn from their mistakes, for example, the ways in which they have handled stress poorly before. Some publish their reflections, or write a book to help others with cancer, and some go on to further their education and personal growth late in l i f e . Survivors also learn how to handle stress much more effectively. It is as i f the threat of dying becomes an opportunity for change and growth. They become more active agents in their own lives, moving toward pleasurable involvement and avoiding unhealthy c o n f l i c t . Some people learn that they need to disengage themselves from confrontation; others learn that they need to stand up more for themselves, even when this means creating confrontation. One man noticed that as he stepped back from conflict he was able to encourage his wife to take a more dominant role in their relationship, and this had a powerful and 122 beneficial effect upon their marriage. Survivors look for creative solutions to problems. They are open and receptive to new p o s s i b i l i t i e s and see opportunities that previously wouldn't have been considered. There is a growing conviction that l i f e is worth l i v i n g . Setting goals for the future becomes a way of expressing the conviction of expecting to live and having things to live for. It becomes important for survivors to have something ahead to which to look forward and to buoy up their enthusiasm for l i v i n g . These goals help give meaning to l i f e and to their suffering, but happiness does not depend upon achieving these goals. They learn to live with this paradox: they set goals and anticipate a future, yet also accept that these goals may never be realized. Goals become a guide to l i v i n g ; the achievement of these goals is not a measure of success. In seeing their goal, yet not being attached to i t , survivors learn to compensate. They find out that they do not always get what they think they deserve or what they desire, and they look instead for contentment in what is present. They see clearly that everything changes and that change is unavoidable, and yet this awareness does not create inertia. Instead, i t breeds an attitude of letting go, of not being locked into preconceptions of the way things are or the way things should be. Survivors learn that having expectations and setting goals is more satisfying than relying on a predetermined strategy. In learning to let go, survivors become much more adaptable and accepting. Their illness may necessitate a change in career, early 123 retirement, and a change in family roles. For many men the i n a b i l i t y to earn a li v i n g and contribute financially to the welfare of their families was the most d i f f i c u l t thing that they had to accept during the course of their i l l n e s s . The third stage of this journey of personal transformation is that of rebirth, when one is born into a new l i f e . To be born into a new l i f e means the death of the old l i f e . As the old l i f e dies, survivors come to accept their own death. There is the feeling that they are ready to die now because they are l i v i n g a f u l l l i f e , and are doing now what they want to be doing. Death is no longer the enemy. Although survivors s t i l l don't believe that they are going to die at this time, they find ways of accepting the i n e v i t a b i l i t y of death. For example, they might compare death favourably with the struggles of l i f e . In this way they learn to live with another paradox: learning to accept death and yet l i v i n g l i f e . They also learn about timing—knowing when to refuse death and when to accept i t . To refuse death at the beginning of the journey is appropriate timing. It allows people to be transformed by their i l l n e s s . Yet, refusing death later in the journey would impede the transformation process. In accepting death survivors become peaceful, more accepting of l i f e , and more able to let go of regrets about opportunities not taken. Another seeming paradox arises: in accepting death, survivors enjoy l i f e f u l l y . With the conviction that l i f e is to be enjoyed, they look for happiness and joy in situations. This may require a radical departure from Christian values and the Protestant work ethic. Some 124 survivors feel that they have always enjoyed l i f e , and that having cancer has not changed this except by making them aware of how much they love i t ! Others feel that the illness d e f i n i t e l y impelled them toward more enjoyment of l i f e . Survivors begin to examine their reasons for l i v i n g . It does not matter whether i t is religious faith or rationalism that guides their l i v e s . What matters is that these beliefs are crystallized into a philosophy that gives direction and meaning to l i f e . It is also a time of questioning the old values and setting new p r i o r i t i e s . With the poignant awareness that l i f e is short and valuable, survivors recognize that i t is now time to do what is important. Some think, in retrospect, that perhaps any c r i s i s or change in l i f e can provoke a reassessment of values—retirement, serious i l l n e s s , d i s a b i l i t y , losing a partner or a child. What becomes important is often quite different from what was valued before. Old habits and routines and beliefs are examined and discarded i f they no longer bring medniiKj and pleasure. Survivors begin to see how much of their behaviour is determined by conditioning, and also see how binding and unrewarding these old ways may be. Middle-aged women realize that housework and family duties are not so v i t a l to their well-being. Men of the same age realize that financial success is not so cru c i a l . If money was important before, they realize that they can't take i t with them! One'u i;elf-identity is changing. Survivors are no longer defined by their primary role of housewife or breadwinner. They begin to discover what is true for themselves, and that i t is v i t a l l y important 125 to create a meaningful l i f e that is not dependent on approval or recognition from others. This is the search for essence—a search for what is essential in l i f e . P r i o r i t i e s are changed and acted upon. Survivors break away more from routine, convention and gender roles. They ask, "What is i t that I want to do in l i f e , and am able to do?" And then you go out and do i t : taking up crafts rather than washing the floors; travelling to see old friends rather than staying at home; vacationing more with family or spending time abroad; spending money and giving i t away rather than saving i t ; volunteering their time for worthwhile projects rather than working at what may be stressful and unrewarding. They become more spontaneous, and discover in the process that l i f e is more enjoyable this way! Survivors determine a clear purpose in l i v i n g . The threat of terminal cancer has brought into sharp focus the question, "What is there to live for?" Each person comes to her own conclusion, whether i t is experiencing and enjoying l i f e to the f u l l e s t , being of service to others, or having a sense of immortality by leaving some lasting mark on the world, perhaps through children and grand-children. Yet the sense of meaning in l i f e is constantly assaulted by the struggle of l i v i n g with cancer. Survivors develop a perception of these d i f f i c u l t i e s as challenges to surmount. Problems are not just endured; they are valued as an impetus to courage, self-confidence and independence. Handicaps created by surgery are not perceived as disadvantages but as opportunities for learning to become more adaptable. Survivors say that in retrospect they are not sorry they have had 126 cancer. Some feel much richer for the experience, while others simply embrace i t as a learning experience. Most feel that their l ives have indeed been enriched by the people they have met because of their i l l n e s s , and by the things they have done and the ways in which they have grown by having gone through the experience of recovery. The i l lness has been a great teacher: i t teaches through pain and suffering how to be more a l i v e . Survivors are thankful to be a l i v e , and experience a sense of gratitude and appreciation for l i f e that they have not fe l t in the same way before. They feel that l i f e is worth l i v i n g , not despite the hardships, but perhaps because of them. They learn to take one day at a time and be thankful for i t . Here is another paradox: survivors l i v e for today, yet set goals for the future and anticipate what tomorrow may bring. Having a f u l l e r appreciation for l i f e also means being able to express feelings more f u l l y and intensely. It is as i f the whole experience of l i f e is richer and f u l l e r . Both pain and pleasure are f e l t more deeply. Some feel that age has taught them to express their feelings better, while others f e l t forced by their i l lness to learn to express emotions. They learned how v i t a l i t was to release conf l ic t and emotional tension, part icular ly strong feelings of anger, resentment, frustration and sorrow. Survivors also learn the benefits of asserting themselves. They have the sense that who they are and what they think matters to others. They stand up for themselves and voice their opinions and beliefs with 127 passion. For some people, their sense of self was confirmed by their i l l n e s s . For others, a whole new sense of self emerged. Latent qualities blossomed; they became more of who they essentially were. Some individuals needed to stop being complacent. They recognized that i t was permissible—and even f e l t healthy—to complain more and to express what seemed wrong or what they disliked in a situation. One man noticed the way his wife learned to stand up for herself in face of his assertiveness, so that the changes brought about by his illness extended beyond himself. Survivors express their independence. They identify their own needs and interests, instead of conforming to the expectations of others. They are mure s e l f - r e l i a n t and can express their independence within relationships. This is especially true of women within their marriages. This expression of independence indicates their sense of confidence and self-worth. And yet, while more independent, survivors recognize their dependence and interdependence. One man for whom self-reliance was always an important virtue changed remarkably in becoming more tolerant of others, and more willing to accept his dependence upon them. Significant relationships are deepened. Marriage and friendships are strengthened and become more supportive. There is a stronger sense of teamwork in marriage, as a couple bonds together to share d i f f i c u l t and painful times. Knowing that someone important is there who believes in you and supports you is crucial to survival. While standing alone, you are buoyed up by the presence of someone standing alongside you. 128 In liv i n g with this i l l n e s s , the seeds of compassion are sown. Survivors become active in helping others and contributing to their welfare, and gradually orient their lives toward service. It gives them the feeling that they are contributing to the world in a meaningful way. Often this involves volunteering their time and looking for opportunities to provide a needed service. Some choose to change their work to something they love rather than continue in a vocation that they merely tolerate. This choice is not dependent on monetary compensation. On this path of healing survivors acquire a new id e n t i t y — t h a t of being a teacher. What they have learned from the illness is now shared with others. The mission of giving help and inspiration to other cancer patients, and showing that cancer can be beaten, provides a strong sense of direction. In becoming so c i a l l y and p o l i t i c a l l y active with cancer support groups, they are able to enrich the lives of many other people. This gives greater meaning to their own i l l n e s s . Survivors become spokespeople for important issues, especially the need for people to create more meaningful live s . Survivors experience a geater sense of community than before. There is a strong sense of connectedness with other cancer patients and a bonding with those who have surmounted similar d i f f i c u l t i e s . They have a sense of belonging in the world, and of their family extending far beyond their own bloodlines. The world feels like an extension of themselves; they have more concern about the environment, about human injustice and cruelty and suffering. Instead of being isolated and alienated by this life-threatening i l l n e s s , surviors are drawn closer to 129 others and more into the world. Survivors come to value the fact that they are unique. They look to themselves instead of to others for the source of happiness. They accept themselves as they are, with a l l of their tensions and conflicts and polarities. They learn to live with contradictions: fighting for what they want, yet not being attached to the results; l i v i n g for today, yet setting goals for the future; being independent, yet dependent upon others; duueiLive and opinionated, yet able to liste n and understand others' needs; self-centred, yet more giving to others; pleasure-oriented, yet service-oriented as well; s e l f - r e l i a n t , yet with a feeling of connection to a larger community; appreciating l i f e f u l l y , yet not believing in l i f e at any cost. It is as i f the path of healing is also a journey of individuation—of becoming whole. Finally, in surviving terminal cancer and being transformed by i t , l i f e is celebrated as a f u l l and rich and meaningful experience. Survivors become more active and involved, and have more sustaining interests. They learn to live from their centre, discovering their dreams and l i v i n g them f u l l y u n t i l the end. Essential Structure The story of transformation in surviving a life-threatening illness begins with the threat of death. It is this c r i s i s which awakens the conscious desire to l i v e . Survivors must believe and expect that they are going to l i v e . This conviction reinforces their w i l l to l i v e . They become aware of what i t is that makes l i f e worthwhile: love, beauty in 130 the world, and a desire to experience more of l i f e . Other survivors may f o r t i f y their w i l l to live by showing that i t is possible to survive this i l l n e s s . In looking to experts, these people realize that their fate is in their own hands, as there is only limited help, direction and medical hope, and no guarantee for survival. They must now look within and take responsibility for their l i f e and for their own healing. They must fight their own battle. Survivors take up the c a l l in the s p i r i t of a warrior. They develop courage and determination to confront their fears. They face the unknown with curiousity and a willingness to take risks. Challenges are met with hope and optimism, problems are redefined in a positive light, and d i f f i c u l t i e s are distanced and minimized. Cultivating a good sense of humour helps in taking their struggles less seriously. Survivors discover others who have overcome their d i f f i c u l t i e s in an inspiring way. These people are models of courage and fortitude, and show how to live day to day with a life-threatening i l l n e s s . Survivors look to friends and family for support, and feel buoyed up by the love that pours in a l l around them. Survivors embark upon a quest for self-knowledge that connects them to the source of their healing. As they review their lives and reflect on decisions and mistakes they have made, they begin to discover what is essential in l i f e . They learn how to handle stress more effectively, and find creative solutions to problems. Seeking out opportunities to have meaningful conversations with people, they talk openly about their illness and its effect upon their l i v e s . Concrete goals are set as a way of 131 expressing what is important in l i f e , and declaring their expectation of li v i n g . While these goals are a guide to l i v i n g , at the same time they learn to let go of their attachment to the result. They learn to compensate, to become more adaptable, and to accept their circumstances and their fate. As survivors examine the beliefs underlying their w i l l to l i v e , they become cognizant of the philosophy that guides their li v e s . A clear purpose in l i v i n g is identified; i t may consist of a creative l i f e project, providing service to others, experiencing and enjoying l i f e to the f u l l e s t , or transcending mortality by being remembered in some v i t a l way. As this purpose is f u l f i l l e d , their illness and their lives take on more meaning. Old values are questioned, new p r i o r i t i e s are set and, with the poignant awareness that l i f e is short and valuable, survivors begin to do now what they really want to do. They have the conviction that l i f e is to be enjoyed and lived, f u l l y , day by day. At the same time survivors come to accept their own deaths, and accept that illness and suffering are no longer the enemy. They look to cancer as a teacher; i t has taught them how to become more alive. Their illness has also given them a great sense of appreciation and gratitude for l i f e . The d i f f i c u l t i e s that they surmount make l i f e a l l the more worthwhile, and strengthen them as people. In the process of recovering from cancer people become more assertive, communicating their feelings more f u l l y , and expressing their independence. Paradoxically, at the same time, they depend on others more, develop closer and more satisfying relationships, feel a greater 132 sense of belonging and community, and actively contribute to the welfare of olheiu. Accepting and valuing these paradoxes furthers the journey of healing and carries people along the path of individuation and wholeness. Survivors are endowed with the mission of sharing what they have learned from their i l l n e s s . They become teachers and models to others for discovering what is essential. They inspire others to lead richer, more passionate and meaningful live s . In teaching important collective issues, cancer survivors have become the shamans of our time. 133 CHAPTER 5 Discussion Limitations of the Study This study has depicted a story of transformation shared by four individuals who survived life-threatening cancer. The story revealed a pattern of s p i r i t u a l growth through awareness. This awareness developed as people accepted their illness and learned from i t . The purpose of this study was to understand the process of transformation that can take place in survivors of terminal cancer. The participants in the study were considered to be the "cultural representatives" of the population which is transformed during recovery from cancer (Claspell, 1984, p.79). Their experience may well reveal the universal meaning of transformation through life-threatening i l l n e s s , and perhaps other life-threatening crises. I do not claim that this pattern w i l l be observed in a l l people who survive terminal cancer. As the interview with Paul indicated, people must have the determination and the willingness to learn from their illness in order to be transformed by i t . Recovering from cancer does not necessarily bring about transformation. Four participants confirmed that this pattern of growth and healing was valid for them, suggested that i t was true for other cancer survivors, and that i t may be an archetypal description of transformation 134 through il l n e s s . The pattern discovered in this study did prove to be remarkably similar to cross-cultural accounts of transformation (Campbell, 1968; Durkheim, 1980; Gennep, 1961; Goldstein & Kornfield, 1987; Grof & Grof, 1980; Grof & Halifax, 1977; Williams, 1981). A dialogue with further research w i l l determine to what extent these results can be generalized. Theoretical Implications Understanding the meaning of the transformation process in cancer patients has broad theoretical implications. Other models have only p a r t i a l l y addressed this phenomenon.- They are limited in scope, either by their lack of empirical validation, or by omitting a description of the process of change as i t takes place in people recovering from life-threatening i l l n e s s . This study expands our knowledge beyond that found in other models. The contributions of psychobiology and behavioural medicine were supported by this study. Mind-body research has emphasized the importance of a positive belief system in one's health. From this study i t appeared that a positive belief system was the starting point for change. The threat of death from advanced cancer challenges one's belief system. A person asks, "Do I want to live? Why do I want to live? What makes i t worthwhile living?" The survivors in this study who were transformed by their illness a l l had a strong w i l l to l i v e , an unwavering belief that they would live and that their l i f e was worth livin g (Themes 2 and 3). They were optimistic, faced ongoing 135 d i f f i c u l t i e s with courage and determination, and handled problems in creative and good-humoured ways (Themes 5 to 13, 17 and 18). The psychological model has emphasized the importance of allowing illness to transform our lives, show us a purpose for l i v i n g , and challenge us to grow into whole and individuated persons. This study confirmed these findings. Co-researchers took responsibility for their healing, becoming active participants in their recovery (Theme 4). They openly confronted their fears, reached out to others, shared their concerns, and accepted support (Themes 9, 13, 14 and 15). They became motivated to understand themselves in a deeper way than before, and began reflecting on the meaning of their lives (Themes 16 and 24). As their purpose and path were revealed, these survivors changed old attitudes, values and p r i o r i t i e s that were no longer meaningful (Themes 19, 25 and 26). Their i l l n e s s , and the p o s s i b i l i t y of death, were transformed into a teaching about how to celebrate l i f e (Themes 22, 28, 29 and 38). In the process, these survivors learned how to accept and appreciate themselves as whole and unique human beings (Themes 30, 31, 32 and 3 7 ) . Tnia uelf-acceptance extended to an acceptance of their fate, and a l l that l i f e brings — including death (Themes 20, 21 and 22). The psychological construct of wholeness as an integration of paradoxical or counterbalanced tr a i t s was supported in this study. Survivors were focused and goal-oriented, yet adaptable; s e l f - r e l i a n t and independent, yet dependent upon others; strong-willed, assertive and opinionated, yet ompathetic and f u l l of compassion; self-centred and pleasure-oriented, yet concerned about the well-being of others. This 136 capacity to accept and express a l l parts of oneself appears to be activated in the battleground of suffering and growth. The s p i r i t u a l model emphasized the potential of struggle and suffering as an opportunity for growth. This growth reveals our essence as s p i r i t u a l beings by taking us on a transformational journey. The concept of a journey XLJ central to the process of transformation as documented in this study. The journey taken by cancer survivors who are transformed by their illness reflects, in de t a i l , the archetypal journeys described in religion, mythology, anthropology, sociology and medicine. This suggests that the changes that take place in the l i f e of a person who survives terminal cancer take that person on a journey recognized by many cultuieu. It aeems to be a journey embedded deep within the human psyche. In documenting the experience of cancer survivors, this study has supported the construct of a journey leading to integration. People have a need for growth; our pain, i l l n e s s , suffering and lack of direction impel us to change and become whole. This change is a great struggle, since i t involves a death of old ways and old identity. If this kind of change is allowed and encouraged, i t heals us, and takes us to a new level of consciousness that unites us with a l l beings. The s p i r i t u a l model also suggests that the ineffable qualities of love and unity consciousness are essential to healing and transformation. This study lends support to this hypothesis. Survivors developed closer and more satisfying relationships, and identified support and love as essential to their recovery (Themes 33 and 36). As described in the 137 archetype of the journey, in recovering and returning to the everyday world a person has a renewed sense of responsibility for the welfare of others. Survivors shared what they had learned by surmounting their i l l n e s s — t h e y taught others the importance of courageously facing their fears, not giving in to their d i f f i c u l t i e s , and discovering how to live a meaningful l i f e (Themes 23, 26 to 29, 34, 35 and 38). While they have not appeared to have developed unity consciousness, they have certainly gained a deep transpersonal awareness. There are few other studies which explicate the collective value of il l n e s s . Campbell's (1984) phenomenological study of breast cancer patients does make a limited reference to the social aspect of healing. In women who had mastectomies, she observed a change that she cal l s "awareness of self as part of humanity". This change is described as a deep connection with a l l human l i f e , the experience of the unity of human l i f e , and the feeling that one's story is more than a personal story. These results are confirmed and expanded in this study. In addition to experiencing their connection with humanity in a new and powerful way, these survivors are bringing about social changes. Their personal and family relationships have improved, the lives of other cancer patients and their families have been enriched, and people they have contacted because of their illness have been affected in some beneficial way. Their transformation holds the potential for bringing about a collective change in consciousness. One co-researcher stated i t this way: 138 One in every three people w i l l get cancer sometime in their l i f e . They' 11 <jel i t , not just somebody they know. There can't be anybody in the world who won't be touched by i t , because everybody knows somebody else! And i f i t got to be one in two, people would probably say, "Oh, that's t e r r i b l e ! " Just like I thought that one in three was t e r r i b l e . But after thinking about i t , I don't think i t would be a bad thing to have half the world caring more about the other half! Some big p o s s i b i l i t i e s here!! The suffering that they have endured has made cancer survivors more compassionate. Paradoxically, through i l l n e s s , they have learned to care more for others, and to express daily and openly their love and concern for the well-being of others. They r e c a l l the love and support that was available to them during their dark moments, and remember that, without i t , perhaps they would not have survived. This concept of cancer changing world consciousness is a revolutionary one. Could harmony in the world be brought about by the s p i r i t of love? Does life-threatening illness truly hold this potential? This study suggests that serious il l n e s s brings the same teaching as any s p i r i t u a l path. In learning to accept our pain and suffering, we are taken on a journey of s p i r i t u a l growth. The purpose of this journey is to make us more aware and more whole. We are more aware that suffering is pervasive in human l i f e , and that we need to accept th i s . We become more aware of the purpose of our lives, and of our connection to humanity. We learn how to transform our suffering into the desire to serve others and to make this world a better place. 139 These teachings from cancer reflect the same message taught by many world religions. Buddhism is one example. Awareness and compassion l i e at the heart of Buddhism. Buddhism teaches awareness of what causes our suffering, and how to end that suffering by li v i n g a balanced l i f e , which is called the "Middle Way". Buddhism teaches awareness of how to use every opportunity to awaken to our true nature. Daily l i f e is the practice and the way. Certain practices w i l l help develop awareness, but they are not to be mistaken for the way. The way is to live with love and compassion, to express our caring, to learn selflessness by serving others. This is the essence of Buddhism, and the essence of what may be learned by cancer survivors. The teaching is a s p i r i t u a l one, and a guiding philosophy for how to l i v e . Practical Implications This study suggested that the process of recovery from cancer is a profound journey which can c l a r i f y the meaning of l i f e , the relationship between human beings, and the responsibility each person has for the welfare of others. The process of recovery from a life-threatening disease is much more than a return of physical, emotional and mental well-being. These are a l l important to health, but health also connotes wholeness, and this requires a person to establish a new s p i r i t u a l relationship, not only with herself, but with the larger community. Recognizing that recovering from cancer can be transforming process in a person's l i f e has great implications for the support of cancer 140 patients. Counselling and psychotherapy must no longer seek simply to relieve the stress of a life-threatening diagnosis. Distress is functional; with direction, i t can motivate necessary changes. As LeShan (1961) suggested long ago, for support of cancer patients to be effective, i t must have an existential basis. Many people need assistance in their search for self and for meaning. It is the quest of the individual and yet i t is everyone's journey. Counselling and psychotherapy must not seek merely to eliminate pain, minimize struggles, and f a c i l i t a t e adjustment and normalization. Perhaps Marion Woodman's image of the chrysalis would be useful here. If severe illness is perceived as a chrysalis, and that chrysalis lovingly cared for, when conditions are ripe, the human s p i r i t is liberated. The issues posed by cancer are germane to the f i e l d of counselling psychology. Most people w i l l experience a health c r i s i s sometime in their lives, and w i l l need assistance. There is a lack of social support for navigating and growing from these crises. Counselling psychologists can develop a new model of support based on the experiences of cancer patients like those in this study. The role of the counsellor with someone who has a life-threatening illness is as a consultant/guide in the shared journey of discovering the client's essential being. The counsellor's best tools are love, compassion and her own self-awareness. Siegel (1989) suggests this requires that therapists live their message: that they be open, humble, vulnerable, self-forgiving and self-loving. It also requires that they deal with their own pain. "Will we look within? Can we see that 141 to be of most service to others we must face our own needs, doubts and resistances?" (Ram Dass & Gorman, 1985). Implications for Further Research This study provided f e r t i l e ground for speculation. Several facets of the cancer survivor's experience have been identified as crucial to the process of recovery and transformation. A strong w i l l to l i v e , a positive attitude, a warrior's stance, a purpose in l i f e , a change in values so that one can live this purpose, an alignment of one's personal interests with the good and harmony of a l l — t h e s e are v i t a l to healing. Although we know how to assist people in changing their thoughts and attitudes, we do not know much about activating and reinforcing a person's w i l l to l i v e . This study suggested that the w i l l to live must be revealed through one's own experiences and struggles. People may be assisted in this by revealing to them the conditions under which they might choose to l i v e — w i t h love, support and compassion. There is a need for research to determine what constitutes the w i l l to l i v e . C l i n i c a l observation and theory suggest that a person must have the w i l l to l i v e , to surmount a life-threatening c r i s i s . Some well-designed studies also confirm that i t is significant. Yet we s t i l l do noL know i f the w i l l to live i s , in fact, essential for healing. It has been suggested in this study that the journey of healing and transformation in surviving terminal cancer may establish a pattern with meaning for a l l cancer patients, those with serious, chronic ill n e s s , and others going through c r i s i s and s p i r i t u a l emergency. In order to 142 test this hypothesis, more research on survivorship is indicated. We need to learn from the people who do w e l l . We need to know more about cancer survivorship, and the s i m i l a r i t i e s between cancer survivors and survivors of other cr ises . It might appear from this study that everyone could benefit from the experience of cancer in order to learn what survivors learn. This is not the case. F i r s t , these survivors are a rare breed. Not many of us could transform these illnesses in the courageous manner of these co-researchers. In a c r i s i s , many of us are crushed. Second, our medical system s t i l l operates on the old model that focuses on the physical treatment of cancer. Economic systems would collapse i f half the people in the world developed cancer, as one woman recommended!! And th i rd , although i t does appear that i t takes a c r i s i s and enormous suffering to bring about these transformative changes, perhaps this is not a ncccLmary condition. Perhaps we can learn from the experience of others, l ike these cancer survivors, and learn how to grow and become whole from each moment of our l i v e s . Summary This study has contributed to understanding the meaning of transformation in surviving terminal cancer. This is an area of research that has not been f u l l y addressed by other studies. There are many models of transformation, and many studies of survivorship qual i t i es , but l i t t l e research into the transformation process as i t is experienced by cancer survivors. 143 An existential-phenomenological approach was used to interview long-terra survivors of terminal cancer. There were five participants who told the story of their recovery from cancer and how i t changed their l i v e s . Cochran's (1986) dramaturgical approach provided a model for capturing the meaning of this experience in story form. Analysis of the interviews followed Colaizzi's (1978) method. Significant statements were extracted from the protocols, themes were formulated, and a description of the experience was written. Other sources of data were used in addition to interviews. An autobiography and a series of ar t i c l e s were collected from two participants. This written material was analyzed in the same way as the interviews. The experience of the researcher also served as data, and was analyzed through reflective and descriptive methods. Conducting interviews, s o l i c i t i n g written descriptions and including the researcher's experience allowed the data to be more broadly supported. The results of the study were validated by the participants, who confirmed that the description of transformation accurately reflected their experience. Psychological transformation in survivors of terminal cancer is a s p i r i t u a l journey. In allowing a life-threatening disease to become an opportunity for personal awareness and growth, people can transform their illness into a s p i r i t u a l teaching. Serious illness can teach people about the meaning of l i f e , and give their own lives purpose and direction. Through this affirmation of l i f e , and by following their purpose and pain, healing can occur. 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Maybe you could t e l l me a l i t t l e about what was happening in your l i f e at that time. D: Twenty years ago I was going to go over and v i s i t my brother in Parksville. And I planned to swim. Our kids were teenagers then... That would have made me 52... I was shaving under my arm and.I saw this blue mark. I thought, that's funny. And I started feeling around and I f e l t something hard. I didn't know whether i t was my rib or not. Now i t was about the size of a Brazil nut in shape and hardness. I got out a l l my medical books and started to read. I thought, that is cancer. But i t was the Easter weekend, and I knew I wouldn't be able to get a doctor on Easter weekend so I just took off and had a really good time. My brother and I — he's about five years older than me — we got ahead of the rest of them. We were at Englishman River f a l l s and we were just trotting across on the rocks. Walking across. It made me feel young you know. It was really, really neat. And then I came back. I went to see my G.P. In those days, G.P.'s didn't know much about examining a woman's breast properly. He had examined me six months before. But he stood off about six feet and he said, "Where is i t ? " Now, I'd had to really dig to find i t . So I had to show him. But once he f e l t i t , he immediately got me to a surgeon. And I had a mammogram and what have you. When I got in hospital, I said to the doctor that I wanted to know what was coming down. And he said, "As soon as I know, you'll know." And that was very helpful... I was surprised. I expected to lose my breast, but I didn't expect to have them cut up so high. Right up under the shoulder blade. And then, well down here, so that when I came home I put on a sun dress and ray husband said, "You can't wear that!" Because i t shows, heh. Well, this was a surprise... Now, as far as i t changing my l i f e . . . We did lapidary. My husband got me working with stones the same as he does... I should go back to when I came home from the hospital. I had to 156 have c o b a l t treatments immediately. And they had to dress me each time because i t hadn't healed. And a f t e r the c o b a l t I found a lump i n the other b r e a s t . And t h i s one was p a i n f u l . You know, cancer i s n ' t p a i n f u l . People always t h i n k of i t as p a i n f u l . I t has to press on something, l i k e a nerve or an organ to be p a i n f u l . I went to the surgeon. And he s a i d , "I don't t h i n k t h i s i s cancer, but because you've had cancer, we've got to do a biopsy." This was r i g h t a f t e r the c o b a l t . There was 17 c o b a l t treatments, and you get f i v e a week. I t would have been q u i t e a while a f t e r the surgery. So, t h a t turned out to be a c y s t . But the neighbours a l l had me dead. And I s a i d , "I'm not dying today!" That's how I got r i d of th a t k i n d of s t u f f ! I : Why was t h a t ? Were they a f r a i d ? D: A l o t of people a s s o c i a t e cancer w i t h death. And you see I d i d n ' t . I was d i f f e r e n t i n t h a t r e s p e c t . Most people, as soon as they f i n d out they have cancer, they say, "Oh! I'm d y i n g . " In f a c t , my husband thought I was d y i n g . A l l the people he ever heard of d i e d of cancer. I : Why do you t h i n k you were d i f f e r e n t ? D: I thought i t was because I knew about cancer. And years l a t e r , B.W. who's a nurse c l i n i c i a n a t C l i n i c s a i d , "D. do you t h i n k . . . ? " Because I've always s a i d t h a t . What got me when I'd go to those meetings and sec a l l t h a t f e a r . And I'd say, we've got to teach people about cancer, so they won't be so scared when they get i t . And one n i g h t B.W. s a i d to me, "D. do you t h i n k i t ' s because you were a nurse or because you're you?" I put some thought to t h a t . Because I have f i v e o l d e r b r o t h e r s . And they taught me t o box. And I wanted t o please them. So I d i d a l o t of t h i n g s t h a t most g i r l s don't do j u s t because I wanted t h e i r appproval. So maybe. I don't r e a l l y know myself... My o l d e s t daughter was g e t t i n g married. And they came up to see me i n the h o s p i t a l . And I thought, t h a t ' s f i n e . I ' l l be able to go to the wedding. W e l l , my God, a l l of a sudden... I guess your arm can s t a r t t o s w e l l a t any time, maybe 10 years l a t e r . But I t h i n k when I got the c o b a l t t h a t probably t h a t d i d i t . Because my arm ballooned up. The one t h i n g the doctor s a i d was, "Don't baby your arm." And so I got down on my hands and knees and I p o l i s h e d every damn f l o o r ! Waxed and scrubbed every f l o o r i n the house. So t h a t was not babying your arm. And when I was f i n i s h e d i t j u s t b a l l o o n e d . So when I phoned the doctor h i s nurse s a i d , "You're going t o have t o go i n t o h o s p i t a l . " I s a i d , "I can't go i n t o h o s p i t a l ! There's a wedding here i n two weeks!!" As i t happened the surgeon who'd done the surgery was on v a c a t i o n so there was another doctor t h e r e . Anyway, Stew [my husband] i s an i n d u s t r i a l f i r s t a i d e r . So he knew how s e r i o u s t h i s was. So he b u i l t me a l i t t l e t h i n g . I t went underneath my c h a i r , and up t h i s way, and then he put a c h a i n , and then put a p i l l o w i n the c h a i n , and I would r a i s e my arm up l i k e t h a t . And when my f i n g e r s would t u r n black I'd lower i t down and l e t the blood 157 run again. And we did that, and I got to the wedding without anything on my arm!! Not a thing! Mind you, when I got home from the wedding I was in a mess, but I managed to get to the wedding okay. Then, we would use bandages on my arm. And after I started going to "Living with Cancer", a nurse c l i n i c i a n who now lives in Hawaii, said, "D., why don't you try this Jobis machine?" Well, I had never heard of i t . And so I went in. It was like two rubber sleeves. And they would force air e l e c t r i c a l l y between the two sleeves, and that put pressure on. Then i t would release, and put pressure on, and put pressure on, and release. You did that... They measured your arm every time you came in, until i t got down to where i t wasn't going to get any smaller. Then they sent away to Toledo, Ohio for this custom-made sleeve. And that was a lot nicer, because before, with the bandages and with the arm so big, I learned an awful lot about designing, because you can't buy something that's got a big enough sleeve in this one and a small enough one in the other. Whatever f i t me here didn't f i t me anywhere else. So I made my own clothes. What upucts me now is that I can't sew. And I've even sewn with leather and made lots of leather vests and everything. I like to be doing those things... What has changed in my l i f e is that I miss the hobbies that I used to do. So, when I couldn't do the lapidary, my husband got me doing [siversmithing]. You have a p a i l of water about 60° in temperature and about 30 inches deep. And with an asbestos deal and a torch you melt your s i l v e r and you f l i p i t like a pancake. If you don't like the setting you can melt i t again, and melt i t again. So I can show you a ring that we made between us with that. And then, when that got to be too d i f f i c u l t . . . I did a lot of leather work, I went into doing that. But now my hand is so shaky that I can't hold i t steady. And I loved scrimshaw!... This is on horn. But I ' l l show you my f i r s t piece I ever did. I didn't have much in the way of ivory when I started this, and by the time Stew bought me two shark's teeth, my hand was shaking too much to do anything. But this was the f i r s t piece I ever did. And then, this was the second piece. Now those are on ivory. And this is horn. And those things are horn. And horn is a lot harder to work on than ivory. But a Japanese lady does gold on... i t ' s like glass, but i t ' s . . . I ' l l remember later on what i t i s . . . But Stew slabbed this stone up for her to work on, and she gave me this. That's gold she's put in there. But she's a real a r t i s t . I really miss doing these things... But one thing Stew started 20 years ago (when I was f i r s t diagnosed with the cancer]. He takes me out to dinner every week. And I look forward to that. It's very important to have a goal. It doesn't matter whether you ever make i t . But to have a goal, and have something to look forward to... 158 So, when I was a l i t t l e g i r l , my sister and I used to look forward to the Sunday school picnic. See, I was born in Springhill, a mining town, i t ' s a l i t t l e small town. The Sunday school picnic was the thing of the your. And this particular year i t rained cats and dogs. Well, we were disappointed, but my mother said, "There's always compensations!" And of course I had to get older to realize that she made the compensations. She got the l i t t l e dolls' table out and we had a l i t t l e tea party... This is what I t e l l people about cancer: "There's compensation. You give up this, but you get that. And you may not think i t ' s quite as nice as what you gave up, but you're s t i l l getting something out of l i f e , and as long as you're enjoying l i f e , that's the main thing. And you can look around and see people much worse off than you doing very well."... Now after 10 years I started having tingling and numbness in my fingers. Just the right arm. And I told the cancer c l i n i c . The doctor got very excited. Because this right eyelid droops, too. They happened at the same time. And he figured like I've got Horner's syndrome. There's pressure on the medial and ulnar nerves and a blood vessel running down my arm. So he thought the trouble would be in my brain. So I told you about getting the brain scan. Then they sent me for a tomogram. And they sent me for more x-rays of my neck. They didn't get too excited. After two years they sent me to a neurologist and he thought the trouble was in my elbow. And then he sent me to have an E.M.G. test. Well, when I had the E.M.G. test, then those fingers just danced. The doctor said, "Why did you wait so long?" He thought the trouble was in my armpit. I said there's nothing there. So, he got very determined. Phoned the neurologist and told the neorologist I should be sent back to the cancer c l i n i c . And I thought well, now I'm dying. That's for sure... The second time round, well you think... Dr. E. B., she was a woman doctor, and unbeknownst to me, she had cancer herself. She never told. She was the only one who could feel the lump. It was behind my collarbone there. She was the only doctor who ever f e l t i t . I said to her, "I saw a woman whose arm was in a slii n j , and her doctor had told her that she might as well have i t amputated for a l l the good i t was." And she said, "You're worrying about something that might not happen." That was damn good advice. This same doctor was at a meeting one night. And she said, "I give myself 10 minutes a day to feel sorry for myself." And a young squirt who had cancer said, " I ' l l give you my cancer!" Well, since this doctor has died—she's been dead some years—I think, i f only I'd known she had cancer, and she never said a boo. She had cancer, and just let this woman steam off. But she knew what i t was a l l about. She also knew that I had this other problem. And I said, "When I had the slipped disk i t was my l e f t arm that was bothered. And I know the l e f t arm's atrophied some. But not to the extent that the right one 159 has." So she put me on tamoxifen [an antihormonal drugl. I was on that for four and a half years. And then, things started to get worse. So they thought they would do some radiation. And I said, "How come you say now that you can give me some radiation? You told me seven years ago that I'd had a l l the radiation that I could have." And they said, "Oh, there's one spot we can zap you!" Well, I said that I'd planned this t r i p back east and there was so many stops to be made, and the fact that my sister-in-law was in a wheelchair and my brother has only one hand. I didn't want anything to screw this thing up, you know what I mean. He said okay, and put me on megase, which is another hormone. And he said, " I ' l l see you when you get back." So, when I came back I went thinking I was going to get radiation... I think I told you about when I talked to the painter, asking him about the treatment, and thinking I was talking to the doctor!... Anyway, he said he was going to consult with another doctor. I came again. This time i t was a woman doctor and she said, "I think you should come to the breast conference." So I came again. And there's about 50 doctors who review your case. Of course they always give you an option. "Would you like to do this?" Which puts a hell of an onus on a patient who doesn't know as much as they do. I opted for the chemo, cause I figured, you know, this thing has metastasized to my neck, God knows where else i t ' s gone. So, I took the chemo, and when I was finished, there were two lumps that they could feel were gone, and one was s t i l l there. But I went for three years without that doing anything, and last January i t started up. And I have had about six months of chemo again. Three different drugs. And they now t e l l me... When I went to the neurologist I didn't realize the cancer got this far. I thought maybe I was starting with Parkinson's disease. "Jesus Christ! Who wants that?" (mimicking the parkinsonian drawl]. Anyway, she thought there was no stiffness of the muscles and she said, "You've had this shakiness for so many years, I think you're doing alright." And she said "You can come back anytime." So I'm not on any medication right now, which gives me a nice l i t t l e rest. I'm looking forward to that. Today I didn't feel very good, but yesterday I f e l t almost like myself. So I'm looking forward to feeling good... I: The old you again. D: If that's possible, because after a l l , you've aged in the meantime. You don't know whether you getting back to yourself or whether something else is coming up as you're getting older. But the thing that you have to learn having cancer is that—and even you who are probably very 160 hea l t h y — i t ' s something everybody has to do, is to take one day at a time. Because you could get hit by a bloody truck or something, and that would be the end of you anyway. So i f you're breathing today, be happy for that! I remember saying that once in a meeting. I said, "If you're breathing, say halleluja!" And one of the nuns there... When she f i r s t came to the meeting she couldn't believe that we laughed! But the meeting is not morbid at a l l . It's not at a l l morbid. I get a real bang out of going! Some of the things that are said! Did I t e l l you about the man who said one evening—there were a lot of breast patients there—"I don't know why these women make such a fuss over breasts. You know, after a l l ! " I said, "Well, i t sure screws up your skinny dipping!!" That shut him up. He stopped right there. He hadn't thought about that. Because this same man, i f you removed his scrotum, he'd feel a helluva lot different, woulnd't he! You bet ya! It's not the loss so much as... What bothers me about losing my hair is that I look at myself and I don't look the same. It's not me. That's what bothers you. Not the fact that you've lost your hair. But the fact that you don't look the same. I tried the wig on that I had worn three years ago, and i t ' s just awful! It looked fine three years ago, but i t doesn't look good now. And I wear this hat when I go out. And i t gives me a l i t t l e jaunty look, so that's fine!... I: Would you say that time about ten years ago when you found that other lump, was that a turning point for you in any way? D: When I f i r s t found the cancer and I was in hospital, and an intern asked me how I would feel i f i t was cancer. And I already figured i t was cancer, pretty well knew i t was cancer. And I said, "I am 52 years old. I've had a damn good l i f e . " That's how I f e l t then. Now in the meantime, I started getting grandchildren. My whole attitude changed. I didn't want to go! It's different going, when you've got you and your... But I wanted to stick around and see those kids! And, an 80-year-old man who used to live across the street, he knew for two years that he was dying. And he said D., "I don't mind dying. I don't want to miss anything!" And his son was a jet p i l o t , and after he died, they landed on the moon. And that would have been so exciting for him. But you see, even i f you lived to 130, you're s t i l l going to miss something, so i t really doesn't make a l l that much difference. But being greedy, you want a l l you can get! I: Being greedy, does that mean that you love l i f e , and you want more of it? 161 D: Yeah. I: You're not tired of i t . D: No, I'm not. And I think I remember talking to one nurse about a lady who was very annoyed that she... Her cancer was terminal when she found out about i t . She didn't think this was at a l l f a i r . Because she had escaped from a concentration camp during the war. And she'd married and had two daughters, and then her husband had divorced her. She just hadn't had... As this nurse said i t was hard for her because she hadn't had any real joy in l i f e . But this woman, every meeting, she would start saying, "My house isn't paid for. I've got to leave two teenage daughters." And I met those two teenage daughters, and I thought, those kida urc <joing to make i t . And I turned to her and I said, "Clara, I ' l l t e l l you a l i t t l e story about the farmer who had a barrel of apples. And one was going rotten. So he ate that one. And the next day there was another one going rotten. And he ate that one." And I said, "At the end of the barrel he'd eaten a barrel of rotten apples!" And I said, "Why don't you get out and have some fun?" She'd always wanted to go back to Hungary and see her relatives. She went, and when she came back, she was so far gone they had to take an ambulance to get her to the hospital to die. But she'd done i t ! And when I f i r s t got cancer, I f e l t . . . My mother had wanted me to come back. When I'd lived in Montreal I'd gone back to Springhill. I had two children then. When we came west, we had lost everything we had in Montreal, and had to start over again with three l i t t l e kids. And so there wasn't money to go a l l the way across Canada. But when mother died, I f e l t a l i t t l e guilty about not having got back... And now my father had made the t r i p out here after he was 80. He'd made two trips out here. So my children got to know him. Of course the two l i t t l e ones were so l i t t l e that they didn't remember my mother. So, I thought, by Cod, I'm going to get back to Nova Scotia! Now, a year after my cancer I went back. I've been back a few times since then. I've been to Hawaii. I've been down to California a few times. What I'm trying to say is that thing that I hadn't done was  important to do f and after I'd done that, these things weren't so important anymore. But, i f you've got something that's been gnawing at  you that you haven't done that you feel you should have done, get i t  done! That's important!! I thought when Clara f i n a l l y got to Hungary and saw her relatives, that made her satis f i e d to die then. But having something l e f t undone—of course you always have something you wanted to do—but something that's been gnawing at you should be done. And another thing, we had... My brother and his wife, when they would come ovur from Parksville, we were in the habit of the f i r s t night we would always go to a restaurant to eat. So, we called a taxi, and we had just got down to the corner of Broadway and Glen. My husband was 162 s i t t i n g in the front, and we three were in the back, and I was on the far Liidc here. I didn't uee thiu cumin<j at a l l . But my husband did. These two young people were in a stolen car, and they were going like a bat out of h e l l . It was a brand new taxi, and the taxi driver tried desperately to get us out of the way. And what happened was they hit us, and turned us completely around. And I said, "What's my purse doing over there?" You see I was in shock. And then my brother let out a groan, and I thought, my God, we've been in an accident! And my husband wasn't talking. So I dashed out of the car and ran around to see how he was. He wasn't talking because he'd hit that thing on the side there and his ribs were broken. And he didn't want to breathe even. And my brother wai; bruised badly, and my sister-in-law was bruised. And luckily, here with me, I'm right down to the ribs on this side. But hitting my sister-in-law, she's fat, she cushioned me beautifully! If I had been where Stew was, I'd have been dead!! Anyway, my brother's glasses went clear right into the bicycle track. My sister-in-law's earrings were gone. And I had s p l i t a seam in my coat, and I'd bit my tongue, because I'm always talking! Anyway, we decided after that, my husband and I, that our three children, they don't live in Vancouver anymore. And we thought, gee whiz, i f we were both k i l l e d , what a helluva responsibility this would be for them. So we went downtown, saw a justice of the peace, and he said, "Oh, you don't need me. Just go the drugstore and pick up one of these things, and get somebody who's not interested to witness i t and you're fine." So we did that. And I f e l t better about that. And then, maybe three years ago, a man came to the door wanting to s e l l a memorial service. So he came in and talked. And we were a l l for that. We thought, gee, this is great. Because there's a sheet you f i l l out as to what you want to do. And you do i t in pencil in case you want to change i t ! And I thought, well this is great. It's hard enough with a l l the junk we've got in the basement. It would be hard enough for anybody to do anything. But at least i f they knew what you wanted to do with your remains and everything. So this fellow said, "What do you want to do with the ashes?" I said, "I don't give a damn what you do with them!" He said, "Oh, w e l l . . . " — r e a l old undertaker talk—"you know you should d o uomething." I said, "Well, i f you want to throw them at the root of a tree, and the tree w i l l grow a l i t t l e bit from the aoheu, that's fine." "Oh, and there should be a plaque." I said, "A plaque!" "Oh yes, something for your children to see to know that you've been." I said, "For God's sake, I don't want my kids staring at a bloody plaque!! Just forget that!" So, we're down to the very minimum of what we want. Cremation and to he l l with i t ! But at least i t ' s written there so that the kids know... That again is funny. Because an old man who used to live across the street, he wanted to be cremated. But one of his daugthers was a Brethren. And she protested so badly that they buried him. So when 163 you're dead you've got no say! And the other gentleman who didn't want to miss anything, he always told his wife where to buy the oranges. He just took a l l the responsibility from her. Well, my God, he was hardly cold in the grave and his two daughters came and fixed the whole thing up the way they wanted i t ! So, when you're dead, you're dead. That's for sure... I: Would you say having this illness has changed your ideas about God, or a s p i r i t , or given you any thoughts about l i f e after death? B: No, and this is rather sad, because I've got a son who has done research on the bible. He's a radio astomomer. He had a two year fellowship from Canada for Cal Tec. They were so interested in his research that they wanted to keep him another three years, t...] What he does today is prove the truth of the bible. Because the bible knew before scientists did. [...] When I was a kid, my father used to take us to church. You went to church in the morning, and sunday school after church, and then you went in the evening, and he always took me to prayer meeting on Wednesday night. So I had a lot of teaching of the bible. And he also became an elder and had family worship. One thing he always ended his prayer with, nevertheless, "Not my w i l l , but thy w i l l be done." Which I think is a very, very nice thought. Anyway, when I got away from home, I got farther and farther away from this. When I was in training, I used to go to a church very handy to the hospital. And I was married there, and my three children were christened there. But my husband believes more than I do. And to t e l l you the honest truth, I can watch a flower grow from a seed, and whither and die, and i f that's a l l there i s , that's fine. So, I haven't suddenly... I know some people who are threatened with death, they suddenly get religion. And I know that they said the thief on the cross in the eleventh hour did fine, but that's not my way of thinking... I: It sounds like your way is to live l i f e now f u l l y . . . D: Yeah... Like when my mother-in-law was in hospital, the theologian came around and he said something about heaven being a beautiful place. And I said, "Don't rush me!" I guess I'm a bit from Missouri. I know what there is here, and I don't know i f there is something there. But that's not what you're supposed to do. According to my son, i f you believe, that's a l l that's necessary. Good deeds won't do you a damn bit of good. Anyway, I'm afraid you can't c a l l me a believer. No. Anything I know of the bible my father taught me or I learned i t in Sunday school or in church, or I had to get the bible out because there's something in the crossword that I'm doing. Because I s t i l l can 164 do crosswords!... I: Would you say your attitudes towards suffering have changed, suffering and illness? People always ask, "Why is there this hardship?" There must have been times when you asked, "Why me?" D: No, I never did that. I know when you read about cancer patients, there's five different emotions that they go through. I always t e l l people you don't have to have them a l l . Now, Irene got angry and i t worked for her. Whatever works, that's fine by me. But I didn't think, "Why me?", because I f e l t why should another poor bugger have i t and not me? And most people think everybody else dies but them. But I guess maybe seeing enough of death, when I saw the lump, I did think br i e f l y , maybe a l i t t l e bit about death. And I thought, well, i f this is i t , thank God my children are just about grown up. I think i t ' s far harder for a mother i f she has small children. There's one young woman, she's got lung cancer, and i t ' s gone to her brain, and I know she hasn't got a hope in h e l l . And she found out when she was pregnant with her second child. What worries her, she says she's got lots of family support, but she said, "I don't want my husband to be lonely, but I don't want somebody else to be bringing up my kids." And that to me is a very legitimate thought... But I never went through the, "Why me?" And I never went through the fear. I: And you didn't particularly get angry... D: One thing I did f e e l . At the time the time that Mrs. Rockefeller and Ford's wife got breast cancer, and they didn't have to have a radical. And they discovered that removing the pectoral muscle didn't help one bloody b i t . I said, "If only..." Now, i f - i t i s is a waste of time. But I had to find out, you see. Like my husband said, "Yes, but you're alive." And let's face i t , that's how much the doctors knew then. They did the best they could. There's no sense... In fact, feeling sorry for yourself is a total waste of time. It wouldn't be so bad i f you f e l t good while you're doing i t , but you don't... God, there's an awful lot of talk about positive thinking. Now, you'd be surprised how many new patients, and their families drive this poor son-of-a-gun crazy, saying, "You must be positive!" Well, i f i t ' s a chore to be positive, i t ' s not going to work. The reason you should have positive thinking is when you're laughing, and when you have humour, you feel better. So, that chap who wrote the book and said he had a very serious disease, and he bought a whole lot of comical movies and watched that. Now, that's fine, but that w i l l only go so far. If you're well, you 165 have negative thoughts as well as positive thoughts. And i t ' s okay to have a negative thought. As long as you don't let i t get a hold of you. If you're not aware... This is why I like to get people early, when they've f i r s t got their diagnosis. Because i f they get down to thinking, "Oh, I'm dying!" you may not be able to help them. You may have to get a psychiatrist to get that poor bugger out of that mess. Because they've got too deep in. So, I always t e l l people, "You can have your down days, and that's okay." When I thought I had cancer for the second time, I was on a teetertotter. One day I would say, "This isn't f a i r . My parents lived to their eighties." And the next day I'd say, "To hell with this!" And I'd enjoy myself. So i t was like that for a week I'd say. And that was okay. And of course I've faced the thought of death many times in the 20 years. And the last time I really was faced with i t , I was kind of pleased with myself. Instead of thinking of myself, I thought, well Jesus, you know, my kids are going to feel dreadful! I didn't want them to feel so bad. I've told them, "For goodness sake, don't mourn." Well, that's imposssible. My daughter-in-law said to me, "Now, Mom, that's impossible." Yeah, they would feel bad. But in the meantime... Like when my father died, three weeks before he died there was a family reunion, and he enjoyed himself to the end. And he bought a TV that he never got to see. Because by the time i t was delivered, he was dead. That's l i v i n g , eh? I know some people when they get an il l n e s s , they just stop l i v i n g . They don't do anything. My brother's wife, when she got a stroke, my brother changed a l o t . He used to be like a kid. He was just like having one of your children around, in spite of the fact that he's the one Ihat'u five years older than me. He was just f u l l of beans and always joking. And suddenly, God love us, i t almost seemed a sin i f you were enjoying yourself! I missed the fun brother. I think he was looking through l i f e with rose-coloured glasses. When they get... you better not break thoLie ^lduueu. That's the way they want to look at the world. And they say, i f I don't talk about i t , i t w i l l go away. You know and I know i t doesn't go away. But that's their way of dealing with i t . You can't do anything about that. It depressed me ter r i b l y to go v i s i t him and see him doing this, but that's his way of doing i t . And i t ' s his right to do i t his way. No matter what I think... I: It sounds like you've always been a positive thinker. It sounds like for you i t isn't a chore to be positive. D: No... I only met one man in a l l my years of doing this sort of thing 166 who had never had a problem in his l i f e . He never had an illness in his l i f e , and took i t right on the chin. Most people who take i t well have had obstacles that they surmounted. Like the theologian, J., at the Cancer Control Agency. J. has a video he shows. And there's a lady who's just s i t t i n g on the side of the bed, and she's just found out that she has cancer. She's devastated. And someboody comes in and says to her, "Have you ever had a te r r i b l e thing happen to you in your l i f e before?" She said, "Yes, when I was 10 I was coming home from school, and somebody came out of the house and told me my mother was dead." And he said, "But you survived." Then she got the courage to say, "I've survived once, I can survive again." This nun I was t e l l i n g you about... What made me start to talk at the meetings, I'd gone to five, and hadn't opened my mouth. And this meeting they were short-staffed, there was just a social worker. C.J. used to come to the meetings at that time... This particular night there wuu juat N. And this lady from the interiour got on a yap about her non-cholesterol eggs, and her organic vegetables, and on and on and on... And I didn't know that [this other woman] was a nun, because she was dressed in ordinary clothes. But her face told me volumes. And I thomjht, that poor woman needs to talk, and she's never going to get a chance with this dame here. So I turned around to this lady and said, "And you got cancer anyway." And she shut up like a clam. And the nun got a chance to talk... That worried me so much that I'd done that to that woman so at coffee break, I made a special point to talk to her. And i t had gone over the top of her head and hadn't bothered her a b i t . But i t s t i l l worried me, and I went to N. and I said, "Look, i f I ever say anything that you think has hurt somebody, for God's sake, t e l l me to shut up! I don't mind being told to shut up, but what worries me most is that I ' l l say something and hurt somebody's feelings." So anyway, the nun had had a radical mastectomy, and she'd been in Africa five years teaching, and she had assumed her cancer was gone. And she comes back to Canada and she goes for a physical, and they t e l l her that the cancer has diffused through both lungs, and nothing can be done. Well, she was absolutely devastated, because she figured she only had a few months to l i v e . Well, she took chemotherapy, and one time she joined the CanSurmount group and C.J. got her v i s i t i n g patients, because she said, "I've always been a teacher." And she wanted to do something. So he got her v i s i t i n g patients... Now, she found this man who was an atheist, and yet he was doing very well, and she couldn't understand that. She spoke to C.J. about him, and he said, "Well, he's got a philosophy of l i f e that keeps him strong, and that's that." See? Anyway, she was at the CanSurmount meeting one time and we had a 167 young man and a young g i r l who were both leg amputees. The g i r l won a t r i p for her skiing to Europe, and both of them won honours at the Expo for amputees... Anyway, this young fellow, his leg was amputated so high up I wondered how he could bloody well s i t down. But he played water polo, and he skied. Anyway, he was s i t t i n g beside the nun, and she uuid t h a i she didn't think that she wanted to take anymore of this chemo. She had been so nauseated and throwing up, and enough is enough. And he said, not knowing she was a nun, and I was just s i t t i n g there cringing because he turned to her and said, "Have you tried brownies?" And another woman said, "Oh, how about yoga?" Well, Sister G. said, "I think that marijuana is an assault on the body." And the young fellow said, "I think that chemotherapy is an assault on the body!" Then B.W., who's the nurse c l i n i c i a n there suggested, "You know, there are several drugs to prevent nausea. Maybe the one you've got's not the one for you. We'll try another one." So she took her chemo... Now, yearD have gone by and she's on a new set of chemo, and the Treasurer of CanSurmount and I both went to see her. And she turns to me and she said, "You know, I've just lost two members of my family with cancer, and I'm wondering whether I should go ahead with this or not. What would you do?" I said, "I can't t e l l you what to do. But for me, i t ' s like swimming across the lake. The f i r s t time you start you don't know whether you can make i t to the other side. But i t ' s fun to try." So, by God, she kept up! Finally her cancer went to her brain and she died, but, she was a very big strong help at CanSurmount... Now, this other lady, she is absolutely marvellous. She is probably the one that I think that is the best I have ever run into as far as courage goes. She had an aneurism and lost her memory for a couple of years. She had three daughters that she had to bring up alone because her husband starting molesting them—mistreating them. And after she got away from him she had to keep moving because he kept threatening the children. She had i t really tough. But she surmounted that. And when she found out that she had cancer, and she had been complaining for some time about her symptoms and got the "there's nothing there" and that kind of stuff. She is home right now, but she spends quite a bit of time in the pall i a t i v e care at the Cancer Control Agency. And she's known for quite some time that she's terminal. But she's an absolute joy to v i s i t , because never a bitch, never... I: Does that keep you going now, doing that kind of work, with CanSurmount, and knowing that you can really be of help to people? D: Yeah, I think that is one of my biggest joys in l i f e is going to the Living with Cancer meeting. And j o l l y i n g everybody up! I really get a kick out of doing that. I guess I'm a ham anyway!... Any more questions? I: Yes, another question comes to mind. If you're looking back at your 168 l i f e now, would you say that there were lessons you learned in l i f e ? Or i f you were talking about your l i f e to someone, is there something you could say was the most important thing that you'd learned? D: Yeah, I think I've learned more from failures than I ever learned from winning... Once you find that you can surmount that failure, you gain a l i t t l e confidence in yourself. I think most teenagers—when I was a teenager I f e l t that I wasn't very good at anything. I taught myself to swim, and that gave me a confidence. I thought that was pretty good. I could do one thing well. But my youngest sister seemed more vivacious, and when i t came to my brother wanting to teach us to dance, I was just like a frigging log! Just like trying to move a battleship!! And she was just as relaxed as anything. Well, I eventually learned to dance and did very well. Used to go to the country dances and have a real bang-up time. But although my sister was three years younger, she seemed to me more confident. And do you know, she got married when she was only 20, and I was in training, and I got a letter from her and I knew things were not so good. It was with herself. You see, when she was a pre-schooler, two of my brothers died. One died when he was six, and the other died when he was sixteen. With the six year old, i t was before they gave innoculations for diptheria. And I didn't find out un t i l my father visited me and I asked him what the symptoms were. Because I thought I had k i l l e d my brother. I was three years old, my mother was kept in the hospital for three months because she was so i l l before L i l l was born. And they didn't think L i l l would l i v e . So I was sent to live with my father's older s i s t e r . And they had five daughters. Well, they just thought I was the cutest damn thing that ever was. I was just three. And they would take me when they went out with their boyfriends. They'd pick me out of bed with my nightdress and take me and a l l . Now this I don't remember, of course, but I was told t h i s . So, my oldest brother had wanted a baby sister for a long time, and he would come home from work and say to mother, "Where's D.?" And mother would say she was s t i l l at Uncle Herb's. And he gave her enough trouble... Because Uncle Herb and Aunt L i l l said, "Oh! you've got a l l those boys. You don't need her." But I was at that time the f i r s t daughter, and mother always told me that she had five boys, always wanting to have a g i r l . And then she told my sister that she got her to keep me company. But that's a lot of bullshit! You don't have seven kids... I was grown up before I realized that was a l i e . Anyway, when I came home, I was s i t t i n g out in the garden, and my brother Ralph and I were very good pals. But we had wooden mallets, and we were driving spikes into the ground. And he took my turn, so I just let him have i t over the head, and s p l i t his head open! And my dad took me into the house, and he perhaps should have realized that he couldn't 169 suddenly get me back in line. But I wouldn't say I was sorry. So he took a piece of kindling and whacked me good. Another time I remember refusing to eat my dinner and I got a damn good licking. Now I deserved both of those lickings, and i t ' s straightened me out, so that's fine. But... what was the question?... I came home from school in grade one, and I had lost a fight. This g i r l had grabbed me by the hair and i t was coming out in handfuls, and my head was, I guess, extra tender. Anyway, I came home crying. And they said, "You lost a fight, didn't you? That's the last fight you're going to lose!" And i t was! I: That's when they taught you how to box. D: Yeah. My oldest brother was now in Providence, Rhode Island. But when he would come home to v i s i t . . . My sister and I were so much younger than him. He was five before there was any other children. So, we thought of him almost like God. Because he would lean back in his chair and start bragging, and we believed every damn word that he said!... He brought home these six ounce boxing gloves for my brother Art, who, at 18, weighed 195. My brother, Herb was scrawny. The one that's over in Parksville. Now, when Herb would box with you, he'd let you get a whack in. Art—you hit him, and you did i t . He told me that a good soldier never flinches. But he didn't t e l l me... I was so stupid. If I had been really smart I'd noticed that he shadow-boxed. I set there with my chin right there ready for him to hit a l l the time. And I never would complain, no matter how much i t hurt. One time he grabbed me from behind—he never knew his own strength, and he was seven years older—he grabbed me from behind and he squeezed me this way. "Say uncle! Say uncle!" I was a stubborn l i t t l e bugger. I wouldn't say uncle. And by the time I wanted to say uncle I didn't have any wind to say i t . And when he let me dowm, I was black in the face. Scared him. But he did i t once more before he quit... And he was so capable. God he was capable. He could do anything. And he was always in a l l these plays and everything. And in this one play he was supposed to be shot, and drop dead. So he'd been practising this, and he was explaining to me how you did i t . He said, "Now look. You stand over there, and I ' l l catch you. And the trick i s — I won't catch you un t i l you're almost to the ground. But i f you s t i f f e n up, you won't get hurt." I believed him! And he l e t me f a l l . He didn't do i t on purpose. But this same brother, he had a l i t t l e trick he used to show my sister and I. You take three chairs. You s i t on the one in the middle. You put your head just like that. You put your neck on one chair, and your heels on the other. And then you s t i f f e n up and you take the middle chair out and then put i t underneath again. Well, by this time 170 he has a g i r l f r i e n d . And my mother had hooked rugs on the floor in the kitchen. And he was going to show her this. Well, my god, he got the chair caught in the rug, and do you think my sister and I would help him? To hell with that! We ran off!! [...] I've lost i t now... Oh I know, I said failures had done that. Each time, I'd said that I'd f e l t very, very insecure, and i t took a long time for me to think that I could do things. I think when I got married and I found that my husband, no matter what kind of an ass I'd make of myself, he always stood behind me, and that gave me a great deal of confidence. And now, at this ripe old age, I don't care whether anybody likes me or not! You see, i t doesn't matter. It's beautiful to get old in that respect, because as a young g i r l I used to worry about what people thought. And in a small town like Springhill, everybody knows your business. [...] Now, I don't know s t i l l i f I've answered your question... Now when I was in school i t wasn't popular in my day to study. The g i r l s didn't sLudy. So I would purposely leave my books in school and I remember this history teacher... I was the third seat down, and I looked in the book like that, and the f i r s t date I had i t . And she comes down and asks the question, what year did such and such happen. And she damn near shit herself, because I knew i t ! But that's a l l I knew of the whole damn thing was that! But I would bone up before exams, and I could always a l i p through and do very well, so I guess I got the idea in my head that I could always do this. This is what I mean by failure. There in nothing wrong with failure. You should learn that you can't always do things. Anyway, when I got away from home and found that i f I didn't bloody well bone up I wasn't going to get anywhere... We got married in Montreal, and the three children were born there, and we had a business. I guess I wasn't aware that the other partner's wife was buying fur coats and what have you. We were putting everything back into the business, and that wasn't what they were doing. And he absconded with funds and we won our court cases but we couldn't collect. And so Noreen was just a baby when we moved out here. And we stopped off at Stew's mother for Christmas, and she thought that he'd never be able to find anything in Vancouver. She wanted him in Calgary... [Story about her husband's d i f f i c u l t y finding work right away, and her return to work in nursing.] The fact that the doctors had so much confidence in me, that gave me some confidence in myself. And you kind of feel that there isn't much that you can't do as long as you keep trying... You know, you don't know a l l about yourself, really. People say, 171 "I don't understand my husband." Shit, you don't understand yourself! How the hell can you understand anybody else? I've done things and wondered why in the world would I have done that. Haven't you? Yeah. Life is like that. I: There's always something to learn about yourself. D: Look, I didn't ask you would you like a cocktail, or a glass of wine, or what would you like? We make our own wine, and i t ' s pretty darn good! Now, do you like dry wine? Well this is dry. Because i t ' s pear, from our own pear tree... I: Boy, do you have a lot of hobbies! D: Oh, have we ever! Have we ever!! Do you think we're through talking on this? Hey, Stew! [Calls in husband. We a l l s i t down for an evening drink and snack, and talk about wine-making and rock-collecting for another three hours.] 172 TRANSCRIPT |1 (Case E) I: So why don't I t e l l you again about this study. It's some research I'm doing out at U.B.C. to finish my master's degree in counselling psychology. What I'm doing is going around talking to people like you and D. [a freind with cancer; also a participant of this study] and others who have really done well. So I'd like you to t e l l me the story of how you recovered from cancer, and how i t changed your l i f e . E: Well, I can say with D. that her personality and mine are a lot alike. And she had been very involved with CanSurmount. She'll go by bus; she'll talk to them on the phone. If they want to see her, she'll go by bus to get out there. She's thinking of other people instead of  herself. She's been going through treatment and i t ' s raised hell with her! But she's thinking of somebody else besides herself. Now I finished my treatment in January. Nick had open-heart surgery the third of A p r i l . Now he was in the hospital for two weeks before they operated on him. So i t was—bang! bang!—sort of thing. I had to think of him... When you see some of the others who are just worrying about their own sickness, their own sel f , that just s i t there... Well, you read these books... Getting well again is one of them. Go in a room and just say to yourself, "The cancer is going. The cancer is going." You're s t i l l thinking of cancer... I don't think that's the right approach for a lot of people. I: Well, for you, your husband was real sick. So you were thinking about his health. And when he came back home from the hospital, you were helping him out, getting his strength back... E: We had a homemaker, yes, but she could only do so much. Now he had babyied me and everything else, and to t e l l you the truth, I was quite happy when he went into the hospital! I had time to myself. Now, I didn't take i t l i g h t l y that he was having open-heart surgery, because I was over there everyday. And he was squawking about me travelling on the buses to v i s i t him in the hospital. I didn't have to go. But he was my husband, and he was going through h e l l , so why shouldn't I go? So I forgot about having cancer, or anything else And i f you can laugh at yourself... Now, one of our friends, they drove me over to the hospital, and we were in a car accident. Now I didn't have a hair on my body at a l l . Eyelashes, eyebrows, arms, legs, everything. From the treatment. So I had a wig on. But, well, a kid run in front. He and his wife were in the front seat, and I was in the back. This kid run across the street right in front of them. So of 173 course he had to slam om his brakes. The g i r l behind him couldn't stop. She ploughed into the back of him. So he got out to go back and talk to her. And he came back to the car. And you know how people gather when anything happens. He got out and came back again and says, "Where's my glasses?" He's feeling around on the floor for his glasses. He lost his glasses, so where's mine? And no hair! They're in the back of the car. There's my glasses and my wig! So I put my glasses on, I put my wig on, and I stepped out of the car. And everybody disappeared, seeing me bald-headed in the car! I guess nobody knew what to say, or what to do, so Lhey l e f t ! Well, I just roared!! To me i t was funny to see... They a l l l e f t in a hurry! Poor old Chrissy and Glee, they f e l t horrible about i t . People seeing me out in public. They'd never seen me without i t before. At home I run around without a wig on. And D. has been the same way, with so many times losing her hair. She's only got a l i t t l e bit l e f t now, with her treatment. And she always wore a wig when I f i r s t knew her. When she f e l l and broke her hip bone, when she got shingles, and she was holding her arm so careful so i t wouldn't hurt coming down the stai r s , and she tripped and broke her hip. Well, they took her to the hospital in am ambulance. Stew phoned right away to say that D. was in the hospital, that she'd broke her hip. He didn't think to put her wig on. She went to the hospital without any hair. So of course we saw her without any hair. So she said, "To hel l with i t ! Why should I wear a wig? They a l l know what I'm l i k e . " And of course we saw that she was white-haired, grey-haired instead of blondey-coloured. She'd kept her hair tinted! So she just makes fun of i t . And this time she's never even bothered wearing a wig... I: Why don't you t e l l me a l i t t l e bit about what happened with you in the beginning, and then we can follow that through to get a better idea of what changed in your l i f e since the cancer. E: I went in for a gallbladder operation. October '81. The doctor who did the operation... I came to, I f e l t miserable, of course, after an operation. Nick would come up and see me. And the kids. Nobody said boo. Poor old Nick had to keep i t in. Put on a cheery face and come up and see me. Because the doctor told him on Friday that he was quite positive i t was cancer. And he couldn't say anything, because he told the doctor he'd prefer the doctor t e l l i n g me instead of him. So the surgeon didn't say anything. It was the family doctor that come in on Monday morning and he says, "I hear you've had a rough time of i t . You've got cancer. It's a fast growing one, and you've got three to six months to l i v e . " And he turned around and tore out. Didn't walk out, he tore out! I: Took off as fast as he could so he didn't have to answer any questions?... What went through your mind then? You were just t e l l i n g me that your mother, grandmother, f i r s t husband a l l died of cancer... 174 E: And since I've had cancer, there's two of my brothers gone with i t . . . When he said three to six months, I figured, well, I better get my l i f e in order. There were things I f e l t I had to get done. What kind of funeral So, when [my husband] came up on the Monday night, I asked him to go over and sign me up with the F i r s t Memorial. The next day D. had come to see me. [My husband], he come up later, at night time. He brought the papers for me to sign. I told him to get the hell out, I wasn't dead yet! So, i t was overnight, I'd had a big change in my l i f e . She'd told me, "Quit lying around feeling sorry for yourself and get on with i t ! " If she could do i t why couldn't I? Because I know in the olden days cancer meant death. Now i t doesn't. But unless you have seen other people that have got better, you believe the old story that cancer is death. And more older people are getting cancer today, because they're l i v i n g longer, and i t ' s the older people that have s t i l l got that notion, that i t ' s death. The younger kids are learning day by day, that cancer can be cured. And my own granddaughter, she was sixteen at the time, she said to her mom, "If grandma is in pain, t e l l her to get some marijuana and smoke i t . " Now that was a sixteen year old! My daughter-in-law came up and told me. And at that time i t was the old cancer c l i n i c . I told my doctor what my granddaughter had said and he said, "If you want marijuana, just go down to the ladies' restrooms." Women were going in there and smoking. You could smell i t ! I: So that was before they were actually prescribing i t . E: Right. They couldn't t e l l me to go and do this, but they told me where I could find i t . That was the old old c l i n i c . This one now, they prescribe i t to people... This is the difference between then, and now. There's more programmes going on with cancer. There's more treatments coming up. The doctors who come up with the experimental treatment that I went on, they asked i f I would go on i t . There was no hope otherwise. "So, would you like to try i t ? " "Sure, why not?" If there's a chance i t would help. So I went on i t . And i t worked. They got a medal for i t . Four and a half years later, in the paper, we saw this l i t t l e s l i p where they had been given medals, these two doctors, and they were both my doctors, C. and W. They come up with this new treatment for lymphoma, and i t was working. I: So that was the one that they used for you. It was in your lymph system then? And i t started in your gallbladder? E: Well, they don't know where i t started, because i t was intensive throughout. Gallbladder, l i v e r , spleen, pancreas, lymph nodes and bone 175 marrow. So, really, anybody else with pancreatic cancer, bone cancer, the different places, would have been on i t . But this treatment worked. And i t came out four and a half years later. So we cut i t out and we took i t to Dr. C.'s when we went back for my checkup. And he says, "Oh h e l l , don't worry about that! That's the one that you were on." But i t did work... Nick brought home a piece the other day. Some of the doctors have come up with the genes in the cancer c e l l s . They've found out what is causing i t to change. And they figure they've got the cure for cancer. If this works. We won't know for four or five years. But i f i t works, i t ' s going to be dandy. If they've found what's causing i t , then they can treat the cause... I: Has your l i f e changed much since then? E: Yes! I: What would you have been doing before? E: Oh, ordinary things. If something struck my fancy I did i t . Now we had the t r a i l e r beforehand. But now we never stay home anymore. I've taken up doing crafts. That started when I was going over there [for treatment] and I had to s i t in the lounge for four hours. One of the weeks was a four hour drip. And I had to s i t there and wait un t i l i t dripped through. Somebody was in there making a pair of skates. Crochetting skates. And using paper clips for the blades. I should do that! As a rule, I never stuck to anything before. I'm a Gemini. When I found out how to work i t , that was i t ! I'd lose interest and go on to something else. Always do something different. So, while I was s i t i n g in there making these skates, I'd hand them to the nurses as I finished. Crochet a l i t t l e booty, just about so big. It was red, the main part, and you put white on i t , and long ribbon, and you'd t i e a bow there, and that was a l i t t l e ornament that you wore at Christmas time. Skates! Since that f i r s t time, when everybody got them, just about, in the hospital, a l l the nurses and that. And when my doctor came to me when I was doing them, and said, "Look i t ! A l l my nurses are wearing skates. They say you do them. Where's mine?" So I made him a pair. I realize then that people liked i t . So since then, every Christmas, through the summer I make other things and I give them to a l l the patients who are s i t t i n g in the waiting room, the social work department, pharmacy, everybody gets something. And I always have a saying to go with i t . Like one year I made magnets, fridge magnets. Rainbows. And when I went into the waiting room I said to them, "I was in your shoes about seven years ago. But behind every storm there is a rainbow, and here's one for you to get better with." So these sort of l i t t l e things help them a l l . I was the same. I'd s i t in there, glum, worrying about your treatment coming. What's i t going to be like this 176 time? Am I going to be sick? And before I le f t that room, they were a l l Idlki iKj Lo each other and smiling. Because I had been there before them. I: Would i t have been different for you i f D. hadn't been there? E: Yes.. I: But there must have been something inside you that had that hope or belief that i t could be different for you than i t was for your mom... E: Yes, well, in those days there wasn't too much hope for anybody that had i t . But seeing D., a li v i n g walking person for 15 years or so that she'd had i t , and she'd gotten better. Then why can't I? And a good example... As I said, I lost two brothers after I got i t . One fought. He was down in California. But they didn't give him the name treatment as I had. The one in Vancouver, he had prostate cancer. Which was, at that time, a 95 percent cure. He took to his bed, and he says, "Our mother died of cancer. Our grandmother died of cancer. I'm going to die of'cancer." And I says, "Jack, you don't have to. Look at me!" But I couldn't get through to him. He curled up and three months later he was dead... I: So what would have been the difference between him believing he was going to die, and you not believing that? E: Well, I wouldn't say i t ' s not believing altogether. Because i t ' s s t i l l in the back of your mind. When I get an ache or a pain now, some place where I shouldn't have i t — i t is something that is always in your mind once you've had i t . You can push i t back and not worry about i t . And I've been willing to talk about i t , not hide i t . Which a lot of people do. And especially foreign people. Now there is a lady, she's retired now, she worked at the cancer c l i n i c , and she came over and spoke to us quite a few times on different nationalities and different ways you have to treat them. The East Indians, you go to the son's wife, for anything that they have to know, because the daughter-in-law is always the one who looks after her mother-in-law. The Chinese, with their yin and their yang, don't want to give blood. So at that time the cancer c l i n i c used to give them a l i t t l e glass of cranberry juice. This was to replace the blood that they had to take out of them. And i t worked. So, learning a l l the different things that w i l l help people makes the biggest difference in the world. To try and make them realize that i t isn't f a t a l . Sure, I ' l l most l i k e l y die with cancer, but I'm damn sure i t ' s going to be a lot later on down the road... But since then I've taken 177 to crafts. To hell with the housework! I ' l l get i t done... I: ...but i t ' s not the most important thing to be doing with your day! E: Right! When my kids were growing up you could eat off my floors. When my great-grandchild comes, his knees may be dir t y from crawling around on the floor, but I'm not worried. If i t don't get done, i t don't get done. And I do my crafts instead. My husband's going to retire so we can travel. We look ahead... He's r e t i r i n g in October, but he turns in his pencils at the end of March, because he has sick leave and holiday coming. And we want to go on a caravan to the International, which we're going to do, to Notre Dame, South Bend, Indiana. We're going to be gone a l l of June and maybe a l l of July. Since he's been sick and I've been sick, i f there's a r a l l y on, we go. He takes a Friday off. So i t gives us a long weekend. And since both of us have been sick, this is what we have been doing. I: Do you do more together now than you used to? E: Well, we never went to r a l l i e s or that. Just go on holidays. We've been in the club for 13 years. But now we both take off in the club. We're more involved in pleasure than in getting ahead. The almighty dollar don't mean that much to either of us. And through the club I've talked to an awful lot of people that have had cancer. They a l l know that I've had i t . I've never tried to hide i t or anything else. So anybody in the club that's come down with cancer, they come over and aak, "How did you do i t ? " If I can talk to them, a l l well and good. I: Were you like that before? That kind of helping person before? E: Well, not so much. My family meant a lot to me. My house meant a lot to me. And sure, I liked to get involved in things. Before I moved into town after Hansel died, I was in Women's Auxiliary there. And I had Cubs. I was Cub Mistress. And that sort of thing. But i t was a l l to do with the family. Now i t ' s for our own fun. I: It's almost as i f your family's become a lot larger now. Your family's almost everyone that you get in contact with who you can help... E: I have the two boys. I had them from my f i r s t marriage. They're both married. They've both got kids. My granddaughter is getting married in March. The oldest granddaughter. She has a three year old son. When she found out she was pregnant she phoned me. "Grandma, how do I t e l l my mom and dad?" I says, "The exact same way as you told me. Be honest about i t . " So my son said she could either marry the guy, give i t up for adoption, or have an abortion. She says, "I'm having none of i t . I'm keeping i t . Grandma said I could." 178 So, i t was family which my l i f e had revolved about before the cancer. Now we spread our wings and do what we want to do. We both like travelling. We've got that t i n can [mobile home] out there. We're involved with more people. Sure, we keep in touch with the kids. Like for the granddaughter, I made her wedding cake. And, the younger son, he was divorced, and he got married again last July. They came over here, the two of them, I guess about March or Ap r i l . "We've f i n a l l y picked a month we're going to get married." "When's that?" "July." I says, "Sorry, kids. We're going to be down at Beausman, then!" I f e l t sorry for the new daughter-in-law because she just didn't know how to take me or anything else. So she says, "When would you be back?" And I says, "The soonest we can be back is the twenty-second of July." It was a Saturday. So, a couple of days later they came back over. And she says, "Do you really think you could be back for the twenty-second of July?" I says, "Yup! Why?" She says, "We'll get married that day i f i t ' s not too much trouble for you, otherwise we'll put i t off to the following weekend." We come back around the Thursday, so we'd be back before their wedding. I: Would you have done that before? Would you have said, "These are my plans. This is what is important to me"? E: No, no! I'd have given up the holiday for the kids. But not anymore. They've got their l i f e . They've got their friends. They don't worry what I'm doing. The younger son and Deborah, they pop in a l l the time. Because I told them straight out that I was doing what I wanted to do. So i f they want anything with us, they let us know ahead of time. Like New Year's day, they come over here ahead of i t . And they had Christmas with us. And she says, "Oh, I'm figuring on making New Year's brunch. Do you think you could come?" I says, "We're going out for supper with my cousin. Every year he's had Chinese. Taken a l l the family out for Chinese dinner. And they were invited, too. So I says, "Why go to the fuss in the morning, when we have this big do at nighttime?" I called that one off for her!... But I have been more involved with crafts and doing things now that I never did before. I knit, and I crochetted before, but i t was more for the grandchildren or things like that. Now, I do what I like to do, and a l l these new things that I come up with. That's going to be a tul i p . This goes for candles. That's a t u l i p . . . So I've got my crafts, as you can see I've got three or four things on the go. I've got a jigsaw puzzle up here. And at Christmas time... I found out how to do this at Beausman last year. Hyacinths. Do you know what is? It's rings from pop cans. And this is coathanger wire. And we're stopping pollution by using them a l l up. So, we hosted the Christmas party for the club. And we put them out as decorations on the tables. Red, white, red, white... And when they l e f t they could a l l take one... Nick works for the d i s t r i c t of North Vancouver. And I've 179 got to know a lot of the people over there. I asked one of the ladies how many women employees did they have. So, she came back and says, "There's 79 women." After Nick come home, I says, "I'm not giving to one without the other." So I sat here and he made me a l l the stems, and he made the leaves out of corn husks. So I got busy and made this great big box of things. Nick's boss gave him time off to come over and pick me up and go up to the hall before four o'clock. And a l l the women got one! A lot of them s t i l l had their skates on, wearing them, when we went up this year... So i t makes you feel good, doing something for somebody else. And this I think is the main thing as far as people are concerned. Get your mind off yourself and your cancer! It's hard to do when you f i r s t start. I w i l l be the f i r s t to admit i t . Because everyday you're feeling sick, and you don't have much energy or anything. I had to keep my hands busy. Because my fingers a l l peeled. My nails went to pot and everything. I couldn't hold my coffee cup except with two hands. Nick had to cut up my food or mash i t down, and I ate i t that way, because of the palms of my hands. And those sort of things, as far as I'm concerned, are a challenge. I could talk on the phone. I took a pencil and dialed. And just s i t there and talk. It was a challenge to figure out how I could do these things and be independent. And I think that goes for a lot of cancer patients. If they're not thinking of themselves, they're a lot better off. I: Did your ideas change on, know you, why people have such hardships, or why there is that kind of suffering? E: Yes. The f i r s t question i s , "Why me?" But then, as far as I was concerned i t had run through the family and... I: And so why not you! E: Carl and Deb were talking one day, and they says, Carl says, "You know what I'm going to die from? Cancer." I says, "How in the hell do you know?" I says, "I'm not dying from i t . I'm l i v i n g . So get those s i l l y notions out of your head. You're just asking for trouble." But that is the f i r s t question you ask: "Why me?" Even though you know i t ' s in the family. I: What do you do with that? Do you then just sort of put that behind you? How do you live with that day to day? E: It is hard to live with, day to day. And i f anyone is hovering over you, i t makes i t that much worse. Like when I told you when Stew told D. she was stupid, that's the day she f e l t she was livi n g again. But i t proves that you want to be yourself. And have people treat you the same way as before. You're not dead. You're l i v i n g ! You got to live your l i f e . You got to enjoy your l i f e . Happiness is more important than 180 anything else, than having money... Now we're going to move over to a mobile home park when he retires. And we're waiting for the self-owned property and that. We went over and visited this one mobile home. Husband and wife are there. F i r s t time we'd ever met them. Old friends of ours had told us about the place. They said, "I think she's had cancer. But I'm not sure." So, we're s i t t i n g there, talking, go out and tour the place, and I says, "Oh, by the way, did you have cancer?" I: Just like that! Just out of the blue! E: Why not?! Well, I said, "Frank told us that he thought you had, but he wasn't sure." She says, "I don't go broadcasting i t , because a lot of my friends... I've lost a lot of friends because they figure they're going to catch i t from me." So, I asked her where i t was. She said her lungs. She had three-quarters of her lungs removed. She's out golfing and doing the things that she wants to do now. They want a smaller place, so she can get out and do more. She's not house proud anymore. And this is why I figure, mobile home. Both of us want i t in a park, so that when we go away there's always somebody to keep an eye on the place. Don't have to depend on the kids... Now, I would say, the main lesson you learn, when you have been through your treatment, and i t goes further and further and further along, you learn that l i f e is important. Not money, not homes. You are yourself, instead of trying to keep up with the Jones'. And I think that's the best lesson that anybody learns out of i t . . . Cancer taught me how to be more aliv e . . . Carl was going in for an apprenticeship with B.C. Tel. Their rent was going up. Ours was going up. Nick has an office job. Well, he's a parts man, garage parts man. His wages were not that big. But every twenty-fourth of May, we'd go up to Whonnock Lake, rent a tent t r a i l e r , and Carl would drag that up. He was with his f i r s t wife. They started out with just the one kid, and Linda had two, and she was expecting her third. They slept in the tent t r a i l e r . I took the babies in the camper. The g i r l s decided there was no way they could go because they had tiny babies. And there wasn't huggies and those things. I: You washed your own! E: So I said to them, "Think nothing of i t ! Come on up and enjoy yourselves." I started out with a big bucket. Put the diapers in to soak. After breakfast, washed them up, put them up on the line. So they were able to come every year... tTalk about sharing a large house together with her son and his family to save on rent; renting out the basement suite to students to 181 bring in some extra income.] But we've had a ball with this student... These are the sort of things that have changed now... I: You just wouldn't have done that before? [rented out part of the house to students] B: No! I: Is that because you would have wanted more of your own, more of a private space? E: Right... Once you get over the shock of the cancer, and your treatment, the you live every day for what you want to do... Now, every Thursday night at seven o'clock in the cancer c l i n i c , there's "Living with Cancer". And you come in and hear a lot of the people, and their tales and that. We've got to know quite a few of them, because we're always going every week... I guess that would be the best lesson, that you give of yourself more, and not try to take for yourself. I: Is i t different now for you than i t was for you before? Because before you were s t i l l giving of yourself in terms of taking care of your family and your husband... E: Yeah, i t was more family. And now i t ' s the world. This is the difference that I've seen with a lot of them. Like D. is fighting cancer again, but she is s t i l l giving to others with cancer. She is very, very involved. She gets so mad at the [Cancer] Society for breaking up the thing! But how I got started in with that is I found a pamphlet for CanSurmount in the old cancer c l i n i c . And i t had [this name] i f you wanted to get in touch with them. "M. F." My [last] name used Lo be F. So seeing this M. F. in there... I got Nick to phone her. We've had a lot in common since... Now with the cancer patient, once they get over the shock and the main lot of their treatment, then there's a big world out here! Let's look... I: Would you say you have more goals in l i f e now, or are there certain things that you want to do more now? E: Yeah, when my boys' father died, a l l I was thinking of was my boys. I went to work, and everything worked out fine. I had a couple of operations before that they thought were cancer, but i t turned out to be benign cysts. A l l I asked when I had my f i r s t big operation was that I could live to see my kids grown up. They're grown up! They're married! Now to see the great-grandchildren grow! But I don't plan my l i f e 182 around that. That's their problem. And Nick has changed the same way since his open-heart surgery. We're willing to go out instead of just the two of us walking down the road hand in hand, and doing things just with our family and relations. Now he's spread out. He loves the t r a i l e r . We had the truck and camper before, but we didn't go that far. We got that for when we went v i s i t i n g his family. Most of them are in Edmonton. We'd have a place to sleep, so we didn't have to go into their place. So i t was s t i l l v i s i t i n g family. It was s t i l l a l l family. Now there's a bigger world out there. Like D., she's done more travelling, her and Stew this last while, than what they'd done before. They're going away in February for six weeks. Bus tour. She's been to California to see her son so many times! She goes up to Shuswap to the daughter up there. They're always doing something. They're never home. And this is what ours is going to turn out to be when Nick retires. Because we got to think of enjoying the rest of our l i v e s ! I: Would you say that you and Nick have gotten any closer? E: Ah, yes... He was hovering over me like what Stew did to D. But then he had the heart attack. So then I turned and was thinking of him. It just brought us closer together in a lot of ways. Our ideas are the same now. We'll go at the drop of a hat! He's taken early retirement. He's got five years to go before he's 65, but he's quitting at 60... When we were talking about this one [rally] at Notre Dame—a year ago we were talking—"Ah, well, we won't go to that one." And these friends of ours from the north, from Washington, they're going. "Why don't you come?" So I says to Nick, "Why don't you retire?" That's a l l i t needed! We set the ball in motion. He says, "Do you think we can manage?" I says, "Why not?" So he put his name in to reti r e . I: Is that going to be a pretty big change for him? Is his l i f e been pretty much focused on his work? E: Ah, yes... He is gull i b l e in lots of ways. Easily lead. There's another fellow in the club that had two bypasses. He had four. This fellow said the doctor told him that the bypass surgery only lasts ten years. And then you're a goner! So poor old Nick he's worrying himself s i l l y about i t . He's a worry-wart in lots of ways. And he'll be a lot better when he finishes with the job. Because, well he and his boss get along beautiful. But the other foreman in there figures he's a servant in lots of ways. He has to run to them. Well, Nick has an a r t i f i c i a l limb. He's had i t since he was 19. So this made him a l i t t l e b i t . . . When I f i r s t met Nick he was bitter over th i s . Because there was no way he could get a high-paying job. He was handicapped. He applied for so many jobs and didn't get any. Well, he went back to school for his 183 upgrading. He was taking telecommunications. And he went and talked to the principal down at V.V.I. And they told him that he was the top of the class, but they would never be able to place him after because he had an a r t i f i c i a l limb. He was half-way through the course. So he came home and was going to take a long walk off a short pier. And I says to him, "You stay there." I went down to the school. I went up one side and down the other with the principal. Why didn't he t e l l him a year ago? So, I gave Nick a month. We were in a great big house by the General Hospital. And I took students in then, because Nick went back to school. And I had Carl s t i l l going to school. So I figured out the price of everything, what i t mounted up to. I divided i t into three ways. Carl and I were two ways, and Nick paid for his own, because we weren't married then. And I turned in the notice that I wasn't going to have the place anymore, and I told Nick that he had exactly one month to find a job i f he wanted to be with me. I wasn't going to have the boarding house anymore. You know, he had a job within a month!... [Talk about husband's struggles and successes in work.] We've both had sicknesses. We've both had a rough l i f e . Because I'd met him about a year after Hansel died. You see, I'd gone through the cancer deal with him... I: Do you think those struggles have made you a stronger person, or more understanding? E: More understanding. A stronger person. I ' l l stick to my convictions. I w i l l watch... I'm not belligerent with my thinking. Other people have ideas, too. Now Nick and I, we do have the odd... Well, i t ' s not a set-to, because we have never argued. Yesterday when we were out v i s i t i n g these people at the t r a i l e r park, I started t e l l i n g a story, and Nick, of course took over. And i t was a l l , "I..I..I.." So he started t e l l i n g about this kite-flying contest that we had. I said, "Nick, you weren't even there! You stayed back at the t r a i l e r . 1 went!" I have to cut him down to size once in awhile, because I've built him up so much. Now i t ' s a l l , " I . . " But I try to do things in a polite way. I: Is that different? Would you have not done that before? Would you have just sat there and stewed in your seat? E: Right! I'd sat there and taken i t . And he is the same. You do i t in a nice way when you're out in company. But we don't argue at home. And he is very helpful around the house... [Talk about husband's support during E's stay in the hospital.] You're more thoughtful, thinking of other people... 184 I: At the same time as thinking about yourself more, too? E: Right! We think more of ourselves now. If this hadn't happened to either one of us, we wouldn't even have thought of taking off to North Dakota. Or to Notre Dame. Nick would have just stayed working t i l l his time was up. But, the minute I mentioned "r e t i r e " . Yup! we can swing i t . Okay!! [Talk about the importance of enjoying their time together, rather than going for the financial security in working longer.!... Oh, some of the younger kids that have had cancer. It's really rough going. Getting into my age and D.'s age, we've lived most of our l i f e . And we've had a good l i f e . And a long l i f e . And of course we hate to say this is i t . I: Oh, you s t i l l don't want to go! E: No! If I went tomorrow, I wouldn't be sorry. I've had a good l i f e . I'm doing now what I want to be doing. Not s i t t i n g here waiting for Nick to retire maybe in five more years. We may not be here in five years! Either one of us. So we might as well do what want. We've made our wills out. We told the kids, "When we go, you'll have the house or something like that, but I'm going to spend my money as long as I can. And do what we want to do." No, I would say i f you talk to anybody with cancer, after they have got over the treatment, as each day passes... I'd like to see you come to Living with Cancer. And just l i s t e n to the stories. A lot of people, when they f i r s t come in, they're down in the dumps, which is only natural. They've just found out they have cancer. They've got to have treatment. After they've been there, coming regular for a l i t t l e while, they're laughing and joking the same as what we are. Now there's a fellow in there, Don, and his wife. He's going in for a bone marrow transplant... Sure i t ' s bothering him, but he can joke and fool around and everything else. They've got a six year old son. They've taken the son up, to show him where daddy's going to be in the hospital. They know Don's going to lose his hair with the treatment he's going to be getting. So, they're having a hair-cutting party. The son's going to cut daddy's hair! These are the sort of things that they are doing now, before i t even comes... I: Have your thoughts changed on anything you might c a l l s p i r i t or God or...? E: I believe there is a Supreme Being, and He is the only one that knows when you're going to die. We're not church people, but there is a belief there. And he must have more work for me, or I would have been gone. 185 I: Has that belief gotten stronger through your illness? E: Yes. There is some purpose to s t i l l being here. Now, I know when we had to move out of Woodfibre after Hansel died, there was a couple, he had retired from Woodfibre, and I went to v i s i t them a l l the time. Now, he had lost a leg, and was losing the other one. And he kept saying, "I don't know why I'm s t i l l here." I says, "Well, I know why. You're my rock." Which was true. I could go over there anytime I wanted, i f I was feeling sad or wondering why things were happening the way they were, and just talk to him, and he would l i s t e n . So, there's always a reason. I: Even i f you don't know i t . . . Do you think you know the reason now? E: Yes, to help other people. How long He's wanting me to do i t , I don't know. But I'm going to help others as long as I'm l i v i n g . And Nick is the same. He'll talk to the families. Cause he knows what they're going through. So I can take him with me when I go v i s i t i n g anybody. Or he can come with me. He drives. And we both see them... [Talk about their teamwork in v i s i t i n g cancer patients and their families... ] [Talk again about the crafts that they're both now doing together, and trading craft ideas with friends.] These are the things I would have thought were a waste of time before... Most l i k e l y , before, I would have been out coffeeing with the neighbours, which is a waste of time... I: ...and scrubbing your floors! E: Right on! You know, I came home after my operation, when they let me home for the f i r s t time. I got down on my hands and knees and scrubbed the kitchen floor. Because to me i t wasn't clean. It took me the whole bloody day to do i t . By the end of the day I was beat! I wouldn't have cared i f I'd died or not! These are the sort of s i l l y things that I would have been doing ordinarily. I'd done i t before, down on my knees. Not a spongemop around the house. Now I've got two different mops! And i t ' s not done perfect. I don't care! And Nick doesn't worry too much about i t . Every once in awhile some of his family comes and i f I haven't cleaned up enough, he might get busy. He'll get in and help... Housework is not that important... So to heck with i t ! [Tape ends here. E. invites me to stay for lunch and continues talking casually about her l i f e over the next hour and a ha l f . l 186 TRANSCRIPT II (Case F) I: I'd like to invite you to t e l l me the story of what i t has meant to survive terminal cancer and how you've been changed by i t . F: Oh, there's been lots of changes. But I wouldn't necessarily ascribe that to the cancer. The change may have occured anyway. But that would be up to you to decide. To see what the patterns generally are. So you ask me whatever question you feel l i k e . I: Okay. I'd like you to t e l l me the story of how your l i f e has been since you were f i r s t diagnosed. You might t e l l the story as i f i t was a drama. You know, i f there was a play going on, and this was the play of someone's l i f e . F: Oh, Tennessee Williams! He could do a marvellous story about this, couldn't he? Because he had a marvellous touch of bringing out the dramatic... I: So the beginning of the story might be when you f i r s t found out about having cancer. F: I was getting some pains which were obviously serious. I thought they were ulcers. They were upper abdominal, burning, bad burning pains. Regular, systematic. I think my f i r s t concern was, how long is this going to take? How long w i l l I be off work? I had previously been off work for about seven weeks, ten years e a r l i e r . I think that was the main concern, because most of us are hooked into the necessity for working. Whether we need to work, whether we have to work, or whether we're able to work. We're s t i l l somehow committed to this prospect that man is sent, women, people are sent on this earth to t o i l and labour. And you work to a certain goal. You work to achieve the greatest monetary advantage as well as to achieve the highest social or the highest personal advantage. You work for t i t l e , not just for money. You give a man a t i t l e and he won't ask for a raise! And i f you do have a break in Iheue things, you can have a s l i p backward. A l l these things concerned me, when you fight hard and work long for these things. This is me, personally. I: Would i t matter what you worked at? F: I don't think so. I don't believe that many people in l i f e today have ever worked at what they really have wanted to do. I wouldn't say more than five percent. We work at jobs that we find ourselves doing. We look for any job i f we can't do the thing that we want to do. I came to Canada as a court reporter. Couldn't get a job. Whatever position I found myself i n — a s a father with two small c h i l d r e n — I did. I didn't 187 look around and say, "I don't want to be working in an off i c e . " I want to work for a l i v i n g . I want to feed my family. How I do i t . . . I'm willing to s a c r i f i c e . So, I don't think that what you do is too important. You may have yearnings to do something else, but i f you are able to do anything well, you're going to do anything well. And i f you're not able to do anything well, you're never going to learn to do anything well. I think fundamentally we work to a certain level of our a b i l i t y . If you have an a b i l i t y to get ahead, you get ahead in any sphere. I'm absolutely sure of this. So, these were my concerns when he told me I had cancer. I'm not a stupid man. I knew before this happened... So when he told me I had stomach cancer, the f i r s t thing I asked him was, "How are you going to solve i t for me?" When I go to a bank, [the loans officer) solves my money problems. I'm now going to a doctor. "You solve my medical problems!" I have great faith in the medical. I'm a l i t t l e bit cynical about them now, but I had great faith in them, then. I mean, a doctor, he can stick a knife in you, and you l i v e ! But i f I stick a knife in you, you die! It's as simple as that. I never was, at that time, I never was pessimistic about my prospects for survival. And when I came through the operation, which was a very, very d i f f i c u l t operation. It's probably the second most d i f f i c u l t of a l l surgeries. Strangely enough, not heart transplant. Lung removal. But gastrectomy is extremely d i f f i c u l t as well. I didn't have any doubts about my a b i l i t y to survive. Because right up to that time I was playing soccer regularly in a league, practising in the evenings, doing a l l sorts of neat things. Hiking, walking. I: What else was happening at that time? P: I'm glad you asked. I was having a real bad time at work. I kind of got into... I think the A and the B personalties may come in here. I got right between a power struggle between fractions in the operations where I worked, tugging this way toward people wanting me to side with them, and going this way against other people. Being asked by one to make a report on a project and a f e a s i b i l i t y study on a certain idea. Getting right in the heart of a c i v i l war for people who downplayed my ideas because i t propagated their opponents. It was a real bad time for me. And I found I tended to take these things to heart far too much. If you're asking what I think caused this, I can t e l l you exactly what caused i t , the cancer. Three years earlier, in 1976, I had tried to give blood to the Red Cross. I did i t every three months. And they wouldn't take i t , because the consistency was too low. And they told me then, "You have something wrong with you. Go to your doctor." I went 188 to the doctor. He said, " I ' l l take some tests. I ' l l c a l l you when I get the answer." Well, after six months he hadn't called me, and I f e l t better. But he sent me to a hematologist, and I didn't hear from him either. And i t transpired that the probability is that I had a duodenal ulcer then. Over three years up to the time that these internal problems were happening, they suspected that this turned into cancer. This is very common, by a l l accounts, and they can show the progression from an untreated ulcer to cancer. The stress was there, and without the stress, the ulcer would probably have not progressed to anything. With the stress, I think probably any lesion would have done i t . But i t was a tough time in my l i f e . That's the only... I've never had a family problem, ever. My wife and I just get along fine. She expects normal things from me and I expect normal things from her. And I think normality is what we're looking for. Throughout your l i f e . . . you're not starry-eyed about anything after a l i t t l e while, after the f i r s t flush of love. But there's much more to a relationship. There has to be. So we don't have that problem, and i t ' s an oasis for me to come home. But my basic problem... I don't get into stressful situations any longer. I avoid stressful situations. I've come to learn that you can't approach problems head on without somebody being hurt. It can be your head or the ram that you're butting. These stressful situations we usually create ourselves. My wife is non-stressful. She has a marvellous knack, like that dog has. If big Sam, my daughter's dog, goes for him, he just shrugs, puts his shoulder up there. No harm done. And i f l i t t l e Cory goes for him, he just backs off. Whereas most dogs, especially the males, i f you do this to them, then they're at each others' throats. That's one thing that I've learned very strongly. Avoid stress. Not because stress in i t s e l f is dangerous, but because it ' s so much easier and i t ' s so much more effective to avoid stress. The stressful person never wins... And going on with this story, i t ' s really a medical story from then on... The surgery was ten years, two months ago. January 2, 1980. And then in Apr i l , 1980... They take a test every weeks. It's a test of blood. It measures your C.E.A., t e l l i n g them whether you are responding to cancer. Or some disease. Mine was way up. This is a strong indication that you have tremendous c e l l a c t i v i t y , abnormal c e l l a c t i v i t y . Which is the essence of cancer. He told me this, and said, "Okay, we're going to do a couple of scans on you." And after a long struggle to get into the cancer hospital, I went along to see Dr. S. at the cancer c l i n i c . . . The results of these scans were that i t had invaded the mouth of the l i v e r . And I asked him, through no sense of bravado—I hate bad news—but my wife was with me, so I asked him, "How long have I got?" And although I only remember his saying, "You have four to six months to l i v e " , my notes—and I used to keep l i t t l e notes each day—I have i t that he said, "Unless treated you have four to six 189 months." But I always remember asking him what treatments do you have, and he said, "We don't know." Because a l l chemotherapy is a matter of experimentation. They try and try to find what for you is the strongest that you can tolerate without doing you in. It's a race! It's a wonderful race, i f you think of i t . Some human involvement is required to make decisions on this. It's an enormous responsibility for these people... The only thing that happened to me is that physically from the feet to the top of my head I slowly get hot-hot-hot-hot-hot! as i f I was completely on f i r e . . . When he told me that... And i t ' s happened several times since, because several times I have had problems, similar problems. And i t only happens at that time in my l i f e . . . Now I've been physically afraid during war ac t i v i t y , without this happening. Perhaps because you are involved, you are active, you are thinking, you are operating. There is something you can do. You're not just s i t t i n g passively and having this presented to you. But that's the only manifestation that I can ever remember... I: Do you remember what you were thinking at that time? F: My only thought response here is that I wonder what he can do for me. I wonder what there is that can help me. Never once that I can r e c a l l , I never lost the conviction that I would survive i t . The thought of dying didn't cross my mind. And therefore i t ' s hard for me to t e l l you this, because I can't rationalize my thoughts... I think people might say, "I thought I was going to die" because people die of this, inevitably, or there's no cure for i t . But I had no logical reason for thinking the way I did. And at other times that my l i f e has been in danger, I never looked for logic then either. I s t i l l had the conviction that I was going to l i v e . My wife t e l l s me this, and I know myself, I'm the classic person that sees that a half bottle is h a l f - f u l l rather than half-empty. Whenever I think something is remotely possible I go for i t . If I've got 15 minutes to get to the ferry and I know the ferry goes in ten minutes, I ' l l go for i t . What have I got to lose? If I've got a job to do—I'm hanging pictures. Some friends are coming, and I've got a half hour to bring the planks in and the ladder, and measure the thing up. I think, "I can't possibly do i t ! But have a go." And I did i t . And I was just bringing the ladder away when the car came up. But I've often thought this a b i l i t y to extract the absolute maximum from a situation is perhaps one of the ingredients. I never give up! I: Do you think there is a so-called survivor personality? F: Yes! I'm absoluely sure of i t . And I ' l l t e l l you why. I came from 190 an extremely unhappy childhood. Extremly so. Children's homes, and foster homes, and a l l the traumas and a l l the tribulations that go with this. Abandonment. And I have never f e l t that this detracted from what I was worth in any case. Whatever I am I would have been regardless... But I never, never, never f e l t I could blame this. I think I am what I am because I am, and not because of any outside influence. I'm convinced of this. And I do believe there are people that are survivors. If you have people that are s e l f - r e l i a n t , and through training or necessity become s e l f - r e l i a n t , in more ways than physically—emotionally, perhaps. That they can get along on their own. When I'm on my own I love being on my own, and I love to have company as well. I'm a gregarious and noisy, talkative person, as you can see. But i f you aren't brought up this way—to be s e l f - r e l i a n t — i f people cater to you, as many parents do, I think this detracts from lots of the prospects you have of survival in any other situation in your l i f e . I: So that self-reliance would come through in work, in relationships, in fighting a disease...? F: I think i t comes through in everything. And I don't know whether you can train self-reliance, but I do know you can get along without an awful lot of things and you can survive. Just the other day I read that one of the survival factors, in prison camps, in concentration camps, were people whose parents had not been indulgent with them. That's just a small part, but I think that the less you have, and the more you can survive that in your early l i f e , the easier i t becomes when you're older. And I don't think that the buffets and the pounding of l i f e which most of us go through, especially emotionally, they don't hurt us and they don't worry us much as perhaps they do people who have been closeted, and carefully protected. And I've often thought, i f we were a l i t t l e bit tougher with our kids, not so protective of them, that their chances of survival when they need i t might be enhanced. And I have a feeling that this is what helped me. I think my background of deprivation probably was a good thing. There are holes. There are enormous holes there. We are not whole people. None of us are whole, but some of us are more whole than others. Especially i f you have one big segment of normal l i f e taken away from you. But you compensate. We have a marvellous way of compensating. I think that my survival is part of that. I didn't have to look around... I knew doctors would help me. Because I knew that i f I phone a carpenter he can help me. In fact my company used to say, "When a customer ca l l s you, he's got a problem. He's got a transportation problem. Answer him. Solve his problem!" And so when I go to a doctor... We're a l l problem-solvers in that way. We a l l answer a need of somebody else. I: Do you think you learned anything during the war about survival? 191 F: Oh yeah. I thought the camraderie of the male was highly honourable. I was highly impressed by the banding together, the brotherhood of men. I think not just only the war, I think that i f you appeal to people... I don't know about women... We are kind of closed societies on each side, I often feel. But I belong to an organization which is a l l men. And I'm amazed, and always in awe of when they're amongst themselves, of the very honourable and moral aspect of their thinking. We are not secretly marauders as lots of people feel that we are... There was far more honour, and far more concern for the fellowman than there was a dog-eat-dog attitude. Far stronger... I didn't reach that type of conclusion tat the time]... A l l I f e l t was, this is a doctor in whom I have faith, I am a person in need, people do survive, why shouldn't I be one of those survivors? Why shouldn't I catch that ferry even though i t should have been gone five minutes before I got there? Maybe there's been a delay for five minutes... I've done i t before... You always push for the optimum! If I'm carrying things I've always got to carry more than I know I can physically manage. Or i f I'm racing the bus, trying to catch a bus, I always do far more in that time than I humanly should. I think there's an ingredient here. Another factor i s , and I think women have t h i s — I was inspired by the fortitude of women. I was able to observe men closely, and as groups, in the cancer c l i n i c . And would observe that down the corridor you heard and saw women in their lowest moments... There's a huge difference between men and women. I was often impressed by how the women handled th i n g s — t h e i r fortitude, their sense of humour, their a b i l i t y to just accept l i f e . Men tend to be different. Men t e l l me, "If I was told what you were, I would have died on the spot." Men give up more easily... I remember teenage g i r l s , for whatever cancer they have, and they do, because my daughter-in-law had cervical cancer at 17. And the g i r l s would come, and they were absolutely broken-hearted at having to lose their hair with chemo. But within a week, i f they knew you, they wouldn't bother to hide their head. Because a female's a female, and a female is very beautiful, regardless of hair. We have a thing about hair. But to be beautiful, a woman doesn't require hair. And I always thought that the bounce-back a b i l i t y of women was so much stronger than men. I think i t ' s because a woman's l i f e is much more parlous than men. Women have always had to be protected because they had to be the bearers of children, and they had to look after, and they were always subject to marauding and a l l sorts of terrible things. And I think i f women hadn't learned to absorb these much more brutal knocks then they perhaps wouldn't have survived. Men can do to women far more than what women can do to men... I would hear, "Yes, she's got 192 cancer of the..." Whatever the worst cancer that you can have. Colon cancer, or something. Just diagnosed yesterday. And the next day this woman would be laughing her head off. People would be saying, "Oh, you poor thing!" "What do you mean, you poor thing? I'm fine!! I'm going to be okay." You never heard this from men. On the men's side there was kind of a gruff, leave me alone, don't bug me. There was very l i t t l e indication that they held hope. Quite frankly I found these rooms traumatic... There's another factor. Keep them away from each other i f you possibly could, but you can't. Because there's a tendency for people to drag other people down... Women are far more self-supporting to women than men are... I think women gang together for protection against men. You go to any gathering and you see a l l the women huddle in one corner. I don't think the men want to huddle in one corner. I think i t ' s because women gravitate towards each other for self-protection. And the bonding I think is closer and tighter with women. What I'm suggesting is that women, by bonding together, raise each other. And men don't bond the same way, and therefore they don't raise each other. And i f you get four men in a room, perhaps they'll start talking to each other, but they'll be like englishmen on the train, they won't really talk to each other... This is just a theory of mine... I: How do men get the support that they need, or do you think i t ' s not important? F: I don't know whether i t ' s important. I don't know whether i t ' s possible. I think men are brought up to be se l f - r e l i a n t , especially emotionally. They're brought up not to bare their inner feelings. We tend to want to put a brave face on. We tend to not want to cry, when crying is appropriate. We're taught this... I don't know whether i t ' s possible to break this so simply. I think i t would have to take a long time of reconditioning before this happens... I would think that women do survive when they have cancers the same way that men have. And men do tend to isolate themselves... It could be that we are at fault as men for shielding ourselves. And i t could be that you women realize that another woman is your salvation. And that an emotional bonding can be of enormous help... I can easily understand how women would support and bolster each other's morale, much stronger than men do. You don't hear men talking about their marriage problems, ever. The next thing that you hear is that a guy you know perfectly well for a long time is suddenly divorced... These are just personal thoughts, observations. I spread this. I talk with people about this. I'm not saying the universe would agree with me... So, I never did get the feeling that I wasn't going to survive i t . I have a feeling that at my very last breath that I would have the feeling that I was going to survive. I think I wanted to survive. My boy had just gotten married. They wanted children. I wanted to survive 193 to see a grandchild. And when the grandchild was born I wanted to survive long enough for that grandchild to remember me. This is our immortality coming up... You and I aren't immortal. Our memory is not immortal. And i f there is a god up there and i f there is a paradise up there, that's good, but sometimes I have my grave doubts. I think our own immortality is what we leave, our influence in what we leave in memories, the things we do, for good or bad. I think Hitler w i l l be immortal. We'll never forget that blighter... I: Did you find that you started setting more goals, or did you always? Whether i t was seeing your grandchild, and then seeing the grandchild at a certain age, and then another goal further along... F: I didn't have those goals in mind before this happened because I simply f e l t that whatever good was going to happen, was going to happen in any case. I didn't have a goal for i t . I didn't think in terms of I hope I live u n t i l my... Because i t was automatic. I was going to l i v e . But then when I was in danger, then I had an aim. I'm quite convinced that this is another ingredient. Not only the w i l l and the need to l i v e , but the expectation of l i v i n g . I think when you say, "Well, I'm going to l i v e . This is what I've got to live for." And coupled with that is this awful thing that I think happens when we say to the poor cancer sufferer, "Now you live for just one day at a time." My God! Today is a terrible time for me. I don't want to go on like t h i s . . . Instead of saying, "Well what are we going to do next Christmas?" Perhaps you might say, "Winter after next, why don't we go and do so and so... We've got relatives in Australia, why don't we go and see them?" And though i t may seem impractical, give the poor sufferer the prospect that he's got something to live for... Don't put his face to the wall and say, well, "Live for today, and when today's over, live for today..." "Live for today" is what you always hear. But don't we live for birthdays and weddings and anniversaries? "Live for the future" is what I think... Survival in i t s e l f becomes almost a motivation to l i v e . I say to myself, "I've got a l i f e to l i v e . " Think of those things you were going to do. Focus on that t r i p we were going to take, that new house we were going to do. And just keep pumping i t at them, as i f l i f e is going to go on. And l i f e is worth liv i n g when i t goes on. And there is a silve r lining to l i f e . It's not always going to be t r a v a i l . . . I think you can always accentuate the prospect that i f you're not going to go back to work, i f you're not well enough to go back to work, we're in good shape. You can always be in good shape. You can always talk people into optimism. There's a rub-off effect both on pessimism and optimism... I can't work any longer. But I can work in the garden. I can walk. I can go on Caribbean cruises. We aren't pressed financially... What I say may be total garbage for anybody else but me. Out of 194 the five b i l l i o n people on this earth, I am unique, and what I say could be unique as well... But we do live for the future. We always do. We live for the great things... Isn't there an old saying, "The anticipation is better than the realization"? And I've found, very often, that the t h r i l l of the anticipation isn't borne out by the realization. Well, the song says, "Is this a l l there is?" Who knows?... I don't know i f we can try and be definitive about this. I think there are ingredients, and there are recognizable ingredients to this... I think perhaps, one of the things we have to recognize is something over which we have no control ourselves, is our own physical makeup. Maybe our diets, which we have control over, but which we're not adequately directed about... And who knows, some of us may be just physically protected from these things... I believe the old idea of the psychological protection that most of us have to have to survive anything. I'm interested in what information there is about prison camp survivors... I wonder i f there are any parallels there with what you've heard. I'm sure that self-reliance would be one of the factors, one of the elements of this. Because you have to be able to grub along... [Talk about the need for self-reliance to have been able to survive the war.] I think one other factor which I think is important... My wife is very tolerant of me. Very supportive. And I think i f you have that buttressing at a time like t h a t — I don't know i f you're actually conscious of i t , but i f you don't have i t , then you'd be very very conscious of the cost. My boss nearly died of kidney fail u r e . And he was about 48 hours in his apartment, unconscious. And he recovered. But his wife was messing around on him. And this man, this boss of mine, he's a very s e l f - r e l i a n t man. He had a tough upbringing on a farm, a brutal father. He survived this, and he survived his wife's i n f i d e l i t i e s . But what i f you didn't have the same resources, the same inner resources as this man? What i f you were t o t a l l y dependent on your partner, as lots of people are? Totally dependent, emotionally. What i f this awful trauma hit you at that time..? My wife and I have known each other for 40 years. And we got married in 1953. We've been married now 36 years. And so we're lucky in that way, we're pretty stable. We don't have emotional... Oh, we y e l l and scrap like the devil, but i t ' s really kind of safety valve releases. I know when she's in that sort of mood, so I keep out of the way. And she's smart i f she keeps out of my way... 195 [Talk about the joys and struggles of family l i f e , the importance of family s t a b i l i t y and relatedness, the appreciation of independence and partnership within marriage.] Every point I've made here is hedged with the idea that with every day that passes we think about things differently. Our reactions are different. Our responses are different. Who can say? How can any of us say what might have been? If your l i f e would have been different anyway. If I retired at 60, we'd have had i t made by then. But this put a whole different fact on our lives. It stopped us dead in our tracks... I can say that I'm a richer person for having had cancer... It's been an interesting experience, not an overwhelming one. There's got to be some good coming out of everything... Shall we take a break now? I: Sure, F. Let's do that. 196 CREATIVE WRITING (Case F) Excerps from short ar t i c l e s written by F. during his illness and published in a community periodical. Different persons handle the news [of a life-threatening illness] in a variety of ways. Much w i l l depend on an individual's fortitude and courage, especially i f buttressed by strong family and social support, firm religious convictions and perhaps most importantly, a basic optimism that, whatever the danger, i t could be overcome. A firm belief in God and a conviction that, no matter what, our fate is always in His hands, can be a great source of strength. I was, and am, blessed with a loving wife and family, and not only had their wonderful support but encouragement from a l l sorts of acquaintances—from my church, my lodge, my soccer club, my recorder society as well as close and distant friends who had heard of my problem. My s p i r i t s were bolstered by i t a l l . Looking back at a l l that has happened to me, I can say that, though my experiences are not enviable, to me they have been a revelation. My attitude toward different aspects of l i f e has changed. Time is no longer a throw-away commodity. Friendships are not taken for granted. I think I'm more tolerant than I was, and the knocks that l i f e inevitably brings, don't seem as important anymore. We're financially poorer now but in more ways we are richer by far. Life has been good to me. For various reasons these hard times—unemployment, early retirement or perhaps disability—more and more men are having to stay at home while their wives go out to work. And with her bringing in the necessary, there's no way we can wriggle out of domiciliary duties the way we used to when we were putting in the daily grind outside... I ' l l bet you never dreamed that mundane old housekeeping could be so rewarding and so much fun, did you? Retirement! The great day is here—paradise or paupery—the time to make up for a l l those lost opportunities missed in the past or to be bored witless now that we don't f a l l under the category of "gainfully employed". Inevitably some of us feel an awful let-down come that fateful day... [Yet] you are s t i l l the same person you were when you were s t i l l working, with the same talents and a b i l i t i e s . 197 For many of us our working lives were like a long air journey—at high altitude and great speed for the most of i t ; the the long, ever-slowing slide down the flight path of the fi n a l years, months, weeks and days to the end of the journey and retirement. How many of us can say that we were truly productive during that f i n a l period? Now that we've arrived and see that great big world of need out there, beckoning to us, perhaps for the f i r s t time in a long while we truly have the opportunity to be "gainfully employed". 198 TRANSCRIPT II (Case M) An i n i t i a l recorded interview did not turn out, and so a second interview was arranged. The format was different, in that more direct questions were asked of M, based on the i n i t i a l interview and the draft of an autobiography she is hoping to publish. I: Well, M., this is another opportunity for us to talk about your recovery from cancer and how your l i f e has changed. I know you were interested in my reading your book. You thought i t would t e l l your story best. m: Yes! What did you think? I: What struck me i n i t i a l l y in your book, from the f i r s t chapter, i t seemed immediately that you looked at your illness as an opportunity of some kind to have have a new experience. Whether i t was being in a hospital—you'd never been in a hospital before; finding out about a medical career. A l l the way along even when you started having the surgery on your shoulder—this was an opportunity to learn how to use your arm in a different way... M: Did I go into some of those details about how I did a few things? Maybe I should have. I: You mentioned about learning to type. How to rest your hand. M: I often fold my arms because I'm supporting my arm. I'm l i t e r a l l y holding i t up... I don't know i f I said anything about that, did I? Perhaps I should mention that somewhere. More changes! Oh dear, i t ' s t e r r i b l e ! I wake up in the night and think of something I haven't remembered back in 1950-something you know. I had never realized that these things were in the back of my memory. They say that every experience you've ever had is in there somewhere. It just needs something to activate i t . This activated a lot of mine. It's really been incredible! I: What do you think i t was, way back from the beginning, when you were 16, that gave you this positive way of thinking about your illness? M: I have no idea, really. I mean I have always been a very, very curious person. I'm the sort who's going along the road and I just want to see what's around the next corner. Or what's over the h i l l . See the view from the top. I peer in doorways that are open. To s e e what 's inside. Particularly in Mexico, that's a wonderful place to do i t , 199 because there's a l l these big walls and big doors. It looks like nothing. And when you look inside you're looking into a palace. Or a gorgeous garden or a courtyard. I guess that's one of the reasons I like Mexico so much! It expresses a lot of the sort of thing that I lik e . I just like seeing around corners and nosing, maybe!! But I've always had an incredible sense of curiosity. I've always wanted to know why, and how, and... When I talked about Christian Science and why i t didn't work for me, I'm sure i t ' s because I am not the sort of person who just believes blindly that this can happen. You know—that I can be cured. I can't imagine how I can be cured when I don't have the bone or the muscle there. My analytical mind says how is that possible, how could i t happen? If there's a lump there, I can't believe that God could just miraculously remove i t . And yet the other half of me is sure that He could. There's something inside me that says, oh yes, i f you can get that kind of faith, I believe anybody could be cured. Of anything. I: And even though you say you don't have that kind of faith, you don't believe that you're going to die. M: Oh no, I never accepted that. The fact i s , I've never been what I c a l l i l l with cancer. I feel more i l l when I nave the f l u . I feel lousy; I've got a high temperature; I feel nauseated; I'm feverish; my body hurts; you know that sensitive feeling—you can't bear anything to touch you. Your nose is stuffed up; you've got a headache. I get ter r i b l e , terrible headaches at the back here. That's one horrible thing that happened. Whether that's stress, tension or whatever. But once I got them I seemed to continue with them... I don't confuse pain and physical discomfort with being i l l . I have a different feeling towards pain. I must have a very strong, high pain threshold. I can stand a lot of pain. But as long as I don't feel i l l . . . If you break your ankle you have a pain, but you're not i l l . I: Does that mean most of what you had with the cancer has been a localized pain? M: Yes, well, localized or a lot of back pain. I get a lot of back pain and discomfort... I think i f your tummy's upset, or you have a sore throat—that's t e r r i b l e . I feel dreadful when I have a sore throat, because then I start getting a fever immediately. I: Did you feel i l l with chemotherapy? M: Yes, and the radiation. I was sick quite a lot. But I think that's f a i r l y normal. That's something that you can put up with in the short-term, because hopefully in the long-term i t w i l l work out. But at least you understand i t . You know what's causing i t . There's a lot of pains and illnesses that you don't know what causes i t , and i t ' s when you 200 don't know that makes you feel worse... Now, i f I had cancer of the lung and i t would make me have trouble with breathing, now then I would probably feel i l l . . . But physical pain—my arm hurts, my neck hurts. Even when I was so doubled up with pain that I could hardly walk; I was having to carry my arm and I was a l l over to one side, and I couldn't stretch up s t r a i g h t — I didn't feel i l l . I: That's very interesting. Something that's very helpful in your mental attitude. I know when I can't do the things that I normally have been able to do because of an injury, I feel as if I'm not myself. And when I feel not myself I feel I must be sick. And then come a l l the feelings with that. What am I going to do to change it? If I can't do anything to change i t there's a l l sorts of feelings that come along with that. M: Well, there's frustration and anger. I get really annoyed sometimes. Like I'm trying to hang something on the line. You try and hang clothes on the line with one arm. I figure out ways of getting around certain things but sometimes the wind would come up and blow something in the wrong way and you get a l l tangled up and messed up and then the thing f a l l s on the ground and gets dirt y . And then I get mad, and frustrated, and angry, and I curse this stupid arm... But mostly I manage to do things... Like sometimes I can manage to carry something in this hand when I'm supporting i t in this other one... I: Now to me, that's a particular attitude of seeing what could be perceived as a handicap as simply a challenge to do something different. M: Oh, you know, I started with i t so young. I've lived with i t so long. I've really forgotten what i t was like to do i t any different. I find myself doing s i l l y things like opening doors for people i f they're carrying things. Figuring I know I would appreciate i t . Because I couldn't do i t very easily myself. I forget that they've got two arms and could probably do i t more easily than I could... I: Do you think you learned any of these attitudes in your family, from your father, for instance? M: My father was a wonderful man. He was the kindest, most peaceful man... Now, he would never say a bad word about anybody. He was just a wonderful person. He was one of the supporters of the church. Everybody, i f anything needed doing, they'd always come and ask him, and he'd always do i t , and he'd never complain, and he'd never expect anything in return. He was just a very good man. I always wanted to be like him, except in one respect only. If you could say he had a fault, i t was that he had no ambition at a l l real l y . . . [Long discusion about her father's work, his struggles, his creative genius, his death just before the pinnacle of his career.] 201 I: So his l i f e was really oriented toward service, and family. Which is i n t e r e s t i n g — t h i s now seems to be the shape of your l i f e . You've made this change from being in the business world, moving from something that was very career-oriented, and was at times ungratifying... M: I used to love being with the customers. Because I f e l t I was helping them to learn some equipment which would make their job a lot easier. I was helping them to do something. But at the same time I didn't feel that the company particularly appreciated any of my efforts. I always had this feeling at the back of my mind that I wanted to help people, and I'm not trying to sound like a martyr or something... I always had this feeling that I was being u n f u l f i l l e d . Although I was doing something to help people, i t was in a business sort of way. And if I wasn't doing i t , somebody else would. They might not be doing i t as well, or they could be doing i t better than me. But the fact i s , somebody was doing i t . . . I just f e l t I should be doing something more meaningful. And yet I never really got a grasp of what i t should be. Until I started doing E.S.L... You don't do things for people because you want them to say thankyou, thankyou, thankyou. You don't do anything for anybody in the hope of a return. You shouldn't. But at the same time, I think i t ' s only human to f e e l — t o have some acknowledgment, some feedback on what you're doing. Because i t sort of inspires you to do more. If you know that what you're doing is bearing some f r u i t , or somebody is really appreciating i t , you're helping them, or they're getting something out of i t , you want to do more for them. Like, we've had this fantastic relationship with this Guatemalan family. And I know they are struggling so hard. I feel I'd just like to buy a house for them! I feel so strongly about them, because I just know they are so hard-working, they are trying so hard, and they are having so many problems. I mean, there is no way I could buy a house for Lhcm, financially, and there's no way they would accept i t . That's another thing. They are very proud. They are going to make their own way. But you feel very strongly that you want to do something for them... I: What got you to stay so long in those jobs where you weren't being appreciated? M: Security. Absolute security. Survival. And the fear that I couldn't get another job without a medical. I mean I did try. I went for a couple of interviews and I f i l l e d in their wretched forms, and at the bottom of these forms was a l l the medical information. "We need your medical records." Well, game over. I tore the thing up. Burst into tears. Well, what's the point?... I: Is that s t i l l true now? M: I don't know. I don't think in quite the same way. Because you can 202 even get [ l i f e ] insurance now, which you never used to be able to... People with a lot of these unacceptable diseases, heart problems and cancer—they can now get l i f e insurance. I guess, i f there's a reasonable prognosis. Events have proved that enough people are surviving. I suppose a lot of insurance companies realize that they won't get much business i f cancer and a l l these diseases are on the increase, there won't be many people l e f t as customers!... Yes, a lot of what kept me working for the same company was I was earning a reasonable salary... In fact, I thought i t was reasonable. It wasn't unt i l some time I realized how much lower I was being paid than a lot of my peers. Because of the Devil [a supervisor]... She kept me down, she kept trying to get r i d of me. She kept offering me— did I want a transfer to New Brunswick?... Sometimes I don't know why I didn't. I guess the climate—after l i v i n g in the east, I found this climate so much better for my chest, as far as the winter goes... I real l y didn't want to move. But I don't know why I didn't... I : That's a good question. Why is i t that we stick with intolerable situations? M: I was so chicken. A lot of i t was my Bri t i s h upbringing, too. It was a very different attitude when I came over here... It was a high-pressure sales, American-run sales organization, where everything's ra! ra! ra! and the almighty dollar. When I worked for the same company in England before I came out here, that was quite an eye-opener. It was really different in England. People used to remark—American company, who wants to work for them? Who wants to work like that? It's too hard. They push you; you're always away; you're always travelling; you're always working; you don't have any time for your family; look how the divorce rate's gone up in the company. Who would want to work for a company like that? When I came over here... I mean, I'd been brought up not to push myself forward. I mean you don't. If you're doing a good job they'll recognize i t and they w i l l reward you suitably. And a l l the jobs I'd had in England had worked like that. I'd got a good raise. I'd been promoted or I'd been given more responsiblities. And the boss has told me "You're doing a good job." And thankyou, and a l l that. Over here you were supposed to j o l l y well say to the boss, "Look what a super job I've done! I deserve this!" Well, I could never bring myself to do that. I was very shy and re t i r i n g . I really couldn't do that. I never pushed myself forward, and I never wrote wonderful letters and reports about what a fantastic job I'd done. Which the other g i r l s were obviously doing, I discovered later... The customers apparently gave rave reviews about my training. They a l l wanted to come on the courses that I was giving... I: Why didn't you go back to England, to an environment that f i t your 203 temperament? M: That's another good question, isn't i t? This is what my book brought up. It comes up to me so clearly. Why did I stick i t out? I think in the introduction I put words to the effect that i f anybdy else could see themselves in a situation where i t ' s screaming to you to get out, well for God's sake, gp_! Do i t ! ! I must have been mental at times to have stuck i t out. I guess I was just very stubborn, obstinate, or whatever. The thing was, at the back of my mind, I do remember thinking, I know I'm doing a good job, and when I leave this company, it ' s going to be on my terms. Like I'm going to retire at the top. Like when I'm doing really well, then I ' l l go. But of course when I was doing really well i t didn't work like that. Because I was enjoying what I was doing so much that I didn't want to leave anymore... But that was s i l l y , because that was to my own detriment... I: It seems, though, that this stubborness or obstinateness in terms of your cancer worked for y o u — i t gave you a determination. You used that word a lot through your book. That sense of perseverence and determination and strength to meet another set-back and go through i t even though there didn't seem to be any reason, any bright picture ahead. M: I suppose I always thought this, I had the feeling that i t ' s got to get better. Just stick i t out a bit longer and i t can't get any worse. It's got to get better. And I guess i t did. Eventually. I don't know what makes me ti c k . . . I: If you were talking to other people who'd gone through a cancer experience like yours, what would you say to them in terms of what would help? M: Like mine? There's not that many people who seem to survive for so long. Which I suppose is why i t ' s so remarkable that I'm s t i l l here talking to you. I guess, too, that's another interesting point. I've never really f u l l y accepted the cancer, perhaps. The mere fact that I'm s t i l l here proves that i t can't have been that bad!!! After my second operation, the word 'cancer' now meant something to me... I: That second operation was in your twenties? M: No, I was 18. That was when they wanted to take my arm off... But even when I came back minus a shoulder blade, and I got the use back into my arm, more or l e s s — w e l l I couldn't l i f t i t much after that point, but I was s t i l l around—I s t i l l f e l t alright, I had pain and discomfort, but I wasn't i l l , I was s t i l l able to function. Therefore, how could i t have been so life-threatening? And again, when I was in Montreal, when I had i t up here, in my neck... With a l l the main arteries and blood vessels and nerves and everything going through to 204 the brain. So there's this big thing in here. So they just took off a piece of the clavicle to round off the end here instead of i t sticking out... Then they gave me chemotherapy and radiation and sort of sent me home to die off. But I survived that, you see, and that was amazing. I was s t i l l here after a l l that. So how could i t have been cancer? How could i t have been fatal? I was s t i l l there talking about i t . And then I went nine years, ten years after that before i t came back here, in the ribs . . . And then they were able to remove that, which they didn't think they could. And I'm s t i l l here, so.... I: Is i t true to say that you dealt with whatever those fears were by saying they must have made a mistake, or i t couldn't have been so serious? M: I never thought of that consciously. My subconscious must be making a mess of me, running r i o t in there, t e l l i n g me a l l kinds of things. I: I think your subconscious has helped you out t e r r i f i c a l l y . M: It's having a b a l l , isn't i t ! Mind you, the last one, when I had i t in my ribs, that was the very f i r s t time I guess I became very depressed about i t . I guess after nine years I didn't think i t would come back again. And the fact that i t had come back again... I don't know what would have happened i f our secretary hadn't said to me, "What's the matter with you? Why are you so i r r i t a b l e ? " Because I didn't realize was i r r i t a b l e . And I went to the doctor. But ever since then I have tended to become i r r i t a b l e , and I never used to be i r r i t a b l e , ever... Strange isn't i t ? . . . I never knew I had a temper until I met Denny [my husband). Two Scorpios together... I never knew I was capable of violent feelings until my father died. And after he died, I f e l t very violent towards this guy who had taken a l l the credit for everything he'd done. Really violent. I wanted to k i l l him. And I was only 21, 22. I had feelings in me about that man that I didn't know I had. Almost frightening feelings. I really f e l t I could k i l l somebody. I: What did you do with that energy? M: Nothing. Buried i t . People get upset i f you start talking so violently. It's not very nice. "She's not a very nice person to say nasty things like that." I: Times have changed! There's a l l sorts of therapies now where you can let i t a l l out. M: Now that's something I couldn't do very well either. I can punch with one hand. I'd get frustrated because I couldn't let i t out with both hands!!... I: Did you have a s p i r i t u a l belief that has helped at these times? 205 M: Well, I have always had some kind of a belief that keeps surfacing... It's at the back of my mind and i t keeps coming up that God has kept me here for some reason. I feel that I have been searching a l l my l i f e for the reason why, against a l l these odds of battling with cancer. Although I'm not so sure I've been so conscious of i t ; i t ' s always been battling. I've f e l t that I must have been saved for some reason, and I want to know what i t i s . And I'd often go to bed at night very consciously and try to see some blinding revelation that would give me some insight as to why I am here. I mean I had hoped to hear — I mean you hear people who hear a voice, or they read something that suddenly has a significance and they feel that they have been led to read a particular book and that page and concentrate on this particular phrase or sentence or paragraph because this is what they're supposed to do. Or they have this strong feeling about going somewhere or doing something and this is why they're here. I'd always hoped that I would feel something. Especially when I went to church. And you're in an atmosphere of peace. Or I've thought well maybe I've been led to come here this particular weekend because the minister is going to t e l l me something in his sermon that is going to be meaningful to me. And i t just never happened. And I've always f e l t vaguely disappointed. Feel sort of let down. But I have been feeling, especially since I got on to this last section of the book, that maybe this i s — t h i s is the sort of thing that I'm here to do. Because for so many years people have said to me, people you meet, friends, casual acquaintances—something triggers a conversation and you talk to strangers the way you wouldn't talk to other people. Especially i f I'm on holiday and i t ' s obvious from what I'm wearing that I've got a problem. Or they see my sleeve, and they say, "Oh, have you hurt yourself? Have you had an accident? What's happened?" I'm not embarrassed about talking about i t . Other people are more embarrassed, because they don't want to know. Or they feel uncomfortable or they feel I'm going to feel uncomfortable. So I assure them that I'm not. And they've a l l expressed, without exception, "How amazing! How wonderful that you're s t i l l here! You sound like you've had such an interesting l i f e . You should write a book about i t . " And I have always pooh-poohed i t in the past. Nobody would be interested in my l i f e . I don't feel that i t ' s something special. Well, my mother chats to everybody, especially since my father died. She talks about her l i f e , and she goes back, over and over. It's really sad, actually, because she lives in the past. She's never looked forward to the future and tried to make a l i f e for herself. She always goes back to the time when her father had a lot of money and he lost i t in the war, and everything went downhill for her. Everything was d i f f i c u l t . And how she lost daddy just when things were getting better. She's never r e a l i t y tried to look positively. She's a very, very negative, d i f f i c u l t lady, I have to admit... Yet she was very supportive and very strong for a lot of years, but after my father died 206 she just disintegrated. And she's become the most negative person I have ever met in my l i f e . She's given me a lot of guilt complexes... I can t e l l you because it ' s a very big problem that I've had to face. I'm going through an awful lot of feelings now, the last couple of years at least, that I don't feel good about. I don't feel good about myself for having these feelings. And I don't feel good about my mother for making me have the feelings. You say, nobody makes you have anything. You control your own l i f e . But I find i t ' s very d i f f i c u l t not to resent the way she's made me feel. Because she's made me feel very guilty. I'm sure she blames me for my father's death. The fact that I survived and he didn't. I think a lot of the worry might have caused his heart attacks. Worry over me. I don't think, I really don't think my mother purposely tries to throw the blame on me. But there are just so many circumstances, so many remarks, so many situations when i t comes up... She's had leg problems since I was born. And she t e l l s anybody and everybody about her leg problems and how she had them having me. Then of course I had these problems, a l l these problems, and she and daddy were running a l l over the place trying to get medical help for me, and of course they'd have sold everything they got i f i t would have helped. Like I'm sure she doesn't do i t on purpose, but i t just goes on and on. It's like a broken gramophone record. Every letter there's some sort of snide l i t t l e comment about something. A l l these problems that she has... It's so unfortunate that she's so negative now. She can never say a good word about anything or anyone... I'd just like to get this book printed while she's s t i l l alive. I never ever thought that I could possibly outlive my mother. Never. I used to save my money to leave more to my mother. Take out this insurance so that I could leave i t to my mother. It never ever occured to me that I would survive her. And for the f i r s t time now... If I get to 50, that w i l l be a miracle! And I would really like the book to be published before then. And I would certainly like i t to be published before my mom... joins my dad. Well, I think i t would give her a lot more positive things to talk about. She hasn't had anything positive... She can never see anything positive... [Long discourse about her sister and d i f f i c u l t i e s with this relationship.] And yet a l l this conflict is going on within me. And I feel bad. I feel guilty. I feel resentful. And I feel guilty because I feel resentful. I feel i t ' s my family. It's a very d i f f i c u l t situation. I don't know what to do... It's not a good feeling. I want to feel good about my mother. I wish she was one of t h e s e — l i k e a few of these friends she's always complaining about. I know she's got a really good friend called G who's a lovely lady. And I keep thinking I wish my mother was more like G. And a l l my mother does is c r i t i c i z e G... I 207 think when mummy goes I shall never set foot in Leeds again... But I would like to get the book printed for mummy. One last opportunity to see i f i t ' s possible that she can get something positive... Any more thoughts? Questions? I: One other thing I was really touched by in your book. You talked about having a strong feeling about l i v i n g your l i f e more f u l l y now because you didn't know i f there was going to be a tomorrow. You f e l t that particularly with travel. That you had to get out and see those places and do those things now. And then that started to affect most of the decisions you were making. M: You know, I've had that feeling for a long time. After I had that big operation in my lung, when they didn't think I was going to make i t , in the early seventies. I went through that long period of depression at work with the Devil [a supervisor at work]. And after I started to come out of that, and started buying some new clothes, and the job was getting better. The Devil quit. I had a manager who was just great. Really helped me a lot. Things started to look much better. I started to feel that I had wasted so many years. In fact I didn't think I was going to survive. But the fact is that I was s t i l l here and obviously I had, so maybe I should start changing my thinking. I wasn't going to meet anybody staying at home. I'd got to go out and make an effort. And I'd got to start doing things. I had had this reprieve. I was s t i l l here. Now how much longer I would be here, who knew? Because the fact that i t had actually come back again after the nine years was a shock... Like i t could come back again just as easily. So, I should live every year as much as I could, just in case there wasn't going to be another one. And instead of putting things off, I should do them now. So I started off, really, by travelling to see friends who I never thought I would see again. Actually, that's something I didn't put in the book. I got this feeling that I should try and travel to see as many friends as I could, who I hadn't seen for years, at least see them this once. See them for the last time. I was going to see everybody one more time... That was a very strong feeling. And I did. I purposely made a point of trying to... Everytime I got a bit of holiday, or I worked overtime and I had some extra days that I could attach to a weekend, or make up a week which was sufficient to go anywhere decent. Whenever I got a business t r i p back east I would add some time to i t and go and v i s i t different friends. I did that a l l the time. And I tried to cover everybody that I knew that I would just like to see once more. And of course, I've seen them many times since! But that was a real driving feeling and went on for a long time. It was like, "Do i t now in case there isn't much later." And then I started this business of goals for myself. Like to achieve this... Once I started one thing I had to have something else 208 down the line that I could work towards. I: Do you think those goals were important? M: Very important, yes. It gave me something to look forward to. Even when things kind of went a bit wrong. I s t i l l had this tunnel vision. Even i f I got side-tracked and i t didn't seem like i t was going to work, or something went wrong and I'd gone off down the wrong tunnel, I would always come back and go straight ahead because I'd got this goal, this sort of shining light at the end of the tunnel that I'd got to reach. I: What i f that didn't turn out, or couldn't turn out, that goal? M: It never didn't turn out!... I suppose I made i t . I: By determination? M: Well, i f i t didn't work one way, i t worked another. I figured out a different way around i t . I can't think of a good example of that, but I can't remember any goal that I didn't actually achieve, that I had to give up in disgust. And as soon as I got to one, then I made another one. It didn't always have to be a long-term goal, in fact preferably i t wasn't, because you were more l i k e l y to achieve the short-term ones than the really long ones. And I did a lot of impetuous things that I'd never done before. I guess my character sort of started to change. In a way, I'd been very conservative, and backward, and then I'd suddenly make a sort of split-second decision. I was never indecisive, but nor was I prone to make decisions quickly and spontaneously. And I started to do a lot of that. You know, "Let's do i t ! Why wait? Or let's do i t now. Sure, let's go!" I used to be the sort of person who was very conservative, and everything had to be done just sort of to a pattern, or to a routine. Like, well, you're working a l l week. The weekend you've got to clean the house. I changed my attitude on that. To heck with the house! It w i l l s t i l l be here when I come back. So what difference does i t make i f I go away for the weekend and go to the Okanagon to see some friends for the weekend? I: Without vacuuming. M: Without vacuuming. It's not going to be much d i r t i e r when I come back. It can wait t i l next week. If something happened next week, I didn't say, "Oh gees! I didn't vacuum last week, I can't go away this week." I'd say, "Another week not's going to make a lot of difference!" I ' l l go and write my name in the dust!... Yes, that was very different. I'd really changed in that... I: It's like the beliefs you had for how you were to run your l i f e 209 didn't f i t anymore i f you were to live day-to-day. M: That's right. I don't think I brought that out well enough, did I? I ' l l have to go back into that chapter. "Life after the Devil". I: I'm wondering i f some of these changes you made would be helpful to most people, whether you have cancer or not... M: I think so. I think they're quite important. Some friends of ours, some very good friends of ours, who ski a l o t . . . Denny's daughter has got a time-share at Whistler, and they have just asked her i f she can bring some more prospective clients up there. And you can have a weekend for 50 dollars. Which is great. Two nights for 50 dollars, while you spend an hour looking over the time-share. And then the rest of your time is your own. Well, they indeed could be interested, in fact, I mean genuinely. Diane's got this and she thinks i t ' s great. And I'm contemplating on buying a week for her, rather than wait until I'm dead. I would rather buy i t now so that she can enjoy i t , and have two weeks. Then she can go somewhere, and we can enjoy i t at the same time. So why wait t i l I have gone? Might as well do i t now. So we're contemplating buying a second week for her, in her name, and maybe joint names, in her name and my name. And the same time we could use our week, to spend the week in luxury instead of our usual bumming around... And she could come with a friend, or whatever. I'm determined that I'm not leaving any money I've got to my family. My mother won't need i t , and my sister I've written off! So I've loaned some money to a g i r l f r i e n d . She was having a terrible time. She's gone to France for a year. She's having problems with her other half. They've gone together. But she didn't have any of her own money. And he was being real niggly. And she wanted to do things when she was over there. And she was really upset and beside herself. So I thought I'd lend her some money, and she actually jumped at i t . Which was great. I mean, I'm going to leave her some money anyway, when I go. I've always got this feeling when I g o , you see. I'm so sure I'm going before a l l my friends. I mean I s t i l l feel that. I f e l t , why not. I said, "Look, don't worry about hurrying to pay i t back." As far as I'm concerned i t ' s hers anyway. She might as well enjoy i t now. So I feel the same thing with Diane. So, I phoned these friends to see i f they'd like it—might as well f i l l the place up. The more you have, the more i t i s . Like a party. And i t ' s cheaper. So I phoned them up. They are so like I used to be. Well, we've got this to do, and we've got the cat. I said, "It's only 50 dollars!" "Oh, I know, i t sounds wonderful, but we're thinking of going to Hawaii in April for a week, and you know, I don't know whether we can afford an extra 50 dollars. And we've got so much to do in the house." I said, "The house wi l l wait, you know. It w i l l s t i l l be here when you come back!" So she said, "I'd love to go skiing! I ' l l have to ask B i l l . " B i l l ' s the same. 210 "Well, we've got this to do in the house." I think, gosh, how a house ties you. And we're re a l l y quite glad now. We don't have anything valuable here, really... I: I think we can find anything to tie us. It can be a house, i t can be housework, i t can be the same show you s i t down to watch at the same hour... M: I'm glad I've broken out of that... Well, Denny's been very good, too. I mean he had a very conventional, conservative marriage. They did everything pretty routinely. I guess since we got together we've done a lot of spontaneous things. To heck with the housework. Go! Like, we didn't have a lot to leave. Which is great. You can lock the door in an apartment as long as somebody down the corridor comes and waters your plants. Which is great. So he said, "I don't want to have a house, and then you've got to worry about the garden." So i t ' s worked out really very well, and we've done an awful lot of spontaneous things, which is a lot more fun. And we've come back, and cleaned the house later. But people get really hung up on cleaning the house! And I realize I used to. I used to get really hung up on things that I had to do that didn't really matter. It wasn't an earth-shaking thing i f I didn't do i t . I think having had cancer, and I hope I brought that out in the book, I've done an awful lot more things with my l i f e than I'm sure I would have done i f I hadn't had i t . And I've met so many more very wonderful people who I'm sure I would never have met i f I hadn't had cancer, because I'd never have got so involved—in these support groups, and the people at the hospital. I mean, whatever way my career might have gone I'm sure I'd have met lovely people in other areas, but I wouldn't have met the same people, or, people who have suffered what they have. And they're somehow rather special. They're quite different. I think when a lot of people have gone through certain things which are very d i f f i c u l t , a lot of suffering, they become rather different types of people. I: Did you notice they also had a search for what their l i f e was about in the same way as you? M: Yes, a lot of them do. And a lot of them have a much greater appreciation for l i f e . They appreciate what they've got. Life i t s e l f . And things going on around. And doing things while they can, while they're s t i l l able. Don't put i t off. Don't wait until you can afford i t . Or you've retired. Because by then, who knows what could have happened? By the time you've retired you could have had a heart attack and be six feet under... And they're more caring about other people. Much more caring about other people... They're very much more aware of other people. And that \ 211 l i f e isn't just earning the almighty dollar a l l the time... No, I'm not sorry I had i t , in a lot of ways. I mean, obviously anybody would rather have a healthy l i f e . Completely healthy. But i t ' s not a l l bad. If you have to have something, I'd rather have had cancer than than become a quadriplegic. I'd rather have had cancer than been blind... I: You've mentioned fear of blindness before. What is i t about blindness? M: Oh, I have a horror of that, blindness. Because I can't see. To me there is so much beauty to see in the world. I get a great high on a tr i p like we've been [to Mexico], and we go through this fabulous scenery. And we see these interesting people. You see this gnarled old Mexican who looks grim, and you smile at him and he smiles back and his whole face is l i t up. To not to be able to see that, I think would be the greatest tragedy. It would be terrible not to be able to see, and not to be able to read. I mean, you could l i s t e n to the television, but i t ' s not the same as seeing i t . So you can read books using b r a i l l e , but every book is not being translated into b r a i l l e . And also i t takes time. I like to do everything fast! I'm very impatient!! To not to be able to see round the corner or over the h i l l , or through the hole in the wall, or see the expressions on people's faces, I think that would be just t e r r i b l e . I'd rather be dead than blind! And I certainly wouldn't want to be a quadriplegic, or paraplegic. To be brain-damaged, that would be another thing. I'd rather be dead. To be retarded or something like that. I know they don't realize i t . I don't want to live any longer than when I'm incapable of surviving the way I am now. Does that make sense? I don't want to survive in a wheelchair. I'd have problems—I could only control i t with one arm. I have horrors about those sort of things. That's much, much worse than having cancer. No, I'm lucky! I can say that because I've survived and I'm s t i l l feeling alright. And okay, so I get pain and discomfort, but i t ' s not de b i l i l d l i n i j . I can live with i t . I can go to bed and l i e down. I like reading in bed, not so much because I like reading in bed, but because i t ' s one of the only places I'm comfortable. And then I have a good night's sleep and then I'm okay again. But i f I was physically incapacitated, and I don't consider this as being physically incapacitating any more because I lived with i t for so long. No, I wouldn't want to live like that... I: Knowing you, I can imagine you'd find a way. M: No, I would hope that I would have strength to take every p i l l I've got stashed up in the event that anything should happen. And I'm s t i l l in enough conscious state to do i t . . . I'm afraid I'm not at a l l in favour of putting people on l i f e support. Not at a l l ! I feel that 212 when your time has come, when God has called, I think you should go. I don't think there is any point in putting people on a l l these l i f e support machines when they're vegetables, and they don't recognize anybody. They can't talk, they can't feed themselves. They can't perform bodily functions. There's no dignity. There's no self-respect, no pride any more. Heavens! People are kinder to animals. They put them down!! Why do they keep human vegetables lying in beds attached to a l l these contraptions? I think i t ' s cruelty at i t s worst! I'm a l l in favour of euthenasia. Whenever they have these programmes on television about those kind of things—changing the law, preserving l i f e at a l l costs. It's ridiculous. I'm a l l for abortion... [Discussion on p o l i t i c a l views on abortion.] To me, l i f e is not worth preserving at any cost... I: Yes, you thought that with your arm, from the beginning. You said you wanted to keep your arm. M: Yes, I didn't want to live without i t . I couldn't see l i v i n g with i t off here. I just couldn't see i t at a l l . I'd rather be dead. And right back from when I was 16, 17 years old, I f e l t that way. And never changed. In fact, I've become stronger and stronger on the thought the more I hear about these idiots who preseve l i f e at any cost. How would they like i t i f was them?! I don't think a lot of people turn i t around to how would I like i t i f I was that vegetable stuck in bed with a l l these tubes. Would I want to survive like that? I mean i f everybody put i t personally... The same thing with the death penalty. I'm a l l in favour of the f i r i n g squad i f there's no doubt about these murderers. Put them off the face of this earth before they can murder somebody else. I don't believe in saving people who destroy l i f e so needlessly. As long as there's no doubt... If you had a daughter, a l i t t l e g i r l , who was raped and murdered, i t is beyond me, religion or no religion, how anybody could turn the other cheek, and say, "Look here, I have another daughter, do i t to her, too. Save this guy. This guy didn't know what he was doing." Rubbish! You see, I've become quite violent, haven't I, as I've got older!! I told you, didn't I, that earlier on I was quite surprised at how violent my emotions had become. And I feel very violent about these people. I could physically strangle them... I'm actually very i d e a l i s t i c . . . I: Yes, that's what I hear behind i t , is those ideals about the quality of l i f e . M: Yes. People who are inconsiderate, thoughtless, s e l f i s h , just rotten to other people, I can't stand i t . I get really upset. Things that are beyond my control. I get really upset about i t . And Denny 213 says, "Stop getting so uptight. There's nothing you can do about i t . It just annoys me, i t i r r i t a t e s me when you go on about i t . There's nothing you can do about i t . " I say, "If everybody said there's nothing you can do about i t , nothing would ever get done. Somebody's got to do something about i t . " I don't know what to do. Mind you, when I was at school, I remember... Maybe I started off a lot younger. Because I remember people used to complain about the school dinners. And way, way back in those days, I guess I was acting out of principle... The company that I worked for, they had this philosophy, that i f you have a beef about something, unless you can see a solution and present i t , don't beef. Unless you are prepared to do something about i t , keep your mouth shut. Which is f a i r l y good, really, i t sounds pretty sensible... But I remember way back in school people were always complaining about these school dinners. Some of them weren't bad, but some of them were pretty awful. And I, timid l i t t l e me, led a group to the head mistress. I said, "You know, there's no point in keep talking about i t and complaining amongst ourselves, because nothing w i l l get done. We should go to the top! There's no point in complaining to our teacher, our class teacher, we should go to the head mistress." So, a whole party of us, almost the class, we a l l went in a body and knocked on the head mistress' door. And in fear and trembling and quaking we told her about the poor meals! And actually something did get done about i t . Because there's safety in numbers. I suppose that's the f i r s t time that I ever asserted myself... I was always very timid. I thought people would laugh at me. I hated that. I suppose that's another thing that made this so bad. When I was teaching, you know you turn your back to the class when you write on the board. And I f e l t that people would laugh at me, or the kids would think I looked funny because one side wasn't the same as the other. I don't know whether the kids even noticed... [Talk about self-consciousness in the past.] I: Well, why don't we c a l l i t a day now. The next step after completing a l l these interviews is to go over them a l l , pull out a l l the themes, and then find out what's in common. M: I imagine D [an acquaintance who has cancer; also a participant in this study] — is a very positive person, too. Yes, she's been very courageous. She's got such a great attitude. She wears a l l these great things and she looks super! She doesn't stop going out and hide! She goes out and makes the most of i t ! She's very forward! Well, i t wi l l be fascinating! 214 TRANSCRIPT #2 (Case M) M: I can't get over this rather revoluntionary thought. I haven't heard this expressed anywhere before, have you?... The director of the Cancer Institute told me that one in every three people w i l l get cancer sometime in their l i f e . They w i l l get i t ; not just somebody they know wi l l get i t . I mean, there can't be anybody in the world who won't be touched by i t , because everybody knows somebody else! And i f a third of the people are going to get i t . . . And if i t got to be one in two, people would probably say, "Oh, that's t e r r i b l e ! " Just like I thought one in three was t e r r i b l e . But after thinking that thought, after reading a l l those testimonies, after doing a l l this research and realizing how i t affected most people, I don't think i t would be a bad thing! To have half the people caring more about the other half!... Some very big thoughts here! A b r i l l i a n t thought! • • • • I: Can you r e c a l l something that happened s p e c i f i c a l l y where you made a decision that you were going to live? M: No, because I never really accepted that I was going to die, so why would I make a decision to live? Once I got over feeling i l l — e n d u r i n g that time—you're more concerned with how rotten you feel than thinking that you're going to die. I think the fact that I was feeling so much better, and I was s t i l l here, almost gave me the feeling that everybody was wrong. I wasn't l i k e l y to die. I just would not accept that I could have died. So there was no specific feeling that said, "I'm going to die, but now I'm going to change. I've got something to live for." Because there really wasn't any particular time that I had anything specific to live for. My career—what I re a l l y wanted to do, to go to university—that career had been ruined. I didn't really know what I wanted to do when I couldn't go to university. I took a secretarial course, but that wasn't what I really wanted to do. I was looking for this blinding flash of inspiration that would t e l l me what I'd survived for. And i t didn't come. And as far as a personal relationship went, like marriage and so on, that didn't seem to be cut out for me. And that was the other thing that I'd wanted. I wanted to go to university; I wanted to be very ordinary and have a marriage and a family. Therefore I didn't really feel I had that much to live for in order to make a conscious decision that I wanted to l i v e . And i t ' s actually just now, in writing this book—I desperately want to live to see i t published! And be able to do something to help publicize i t . I want people to be able to read i t , and gain a lot of information and helpful thoughts... Perhaps, i f anything, i t was my great desire to see the rest of the world before I died—that could have been something that inspired a wi l l 215 to l i v e . To see i t a l l ! Especially nature. I always f e l t that God made the world a very beautiful place. I feel very moved when I think about that. I get a l l emotional about the shape of a gorgeous tree! I go ecstatic!! I say, "Just look at that tree! Isn't i t gorgeous?! The shape of i t , and the colour of the leaves. Look how i t ripples in the wind!" And then you see the wind blowing through a f i e l d of corn. I get very emotional over things like that because I think they're just so beautiful. And flowers, lovely flowers!!... I don't know i f that's a good enough reason. When I f e l t well, I never accepted i t [that I was going to die]. As soon as I start to feel well again, I start to be able to appreciate what's going on outside. I used to look at St. Joseph's oratory out of the window from my bed. It's a large temple—a bit like the Taj Mahal—it stands at the top of a f l i g h t of steps, silhouetted against the sky. And the moon would come up over i t . It looked absolutely beautiful! I f e l t t e r r i b l y emotional about i t . I would look at i t and want to cry! So every night I stared out of the window at i t and every day you could see people trumping up the s t e p s — l i t t l e dots in the distance—to v i s i t i t . It was a very inspiring looking place! I: Is i t true to say that i t ' s almost l i f e i t s e l f that was an inspiration for you? Experiencing l i f e ? M: Yes, i t probably i s . Although a lot of what I experienced I didn't l i k e . I think when I feel good, I feel very good, and when I feel bad I feel horrid! You know the old rhyme? When I feel good I feel good about everything. Very positive. Everything's wonderful. Just looking out of the window, I can see something beautiful out there in the trees. And seeing the blue sky and the sharp silhouettes, the c l a r i t y of the atmosphere, the way the ocean changes colour with the clouds and the sky. It's beautiful! Even the weeds, even! God must really like weeds! They're everywhere. They survive whether you water them or not! I: Some people are told they are going to die and believe that this is what is going to happen. Or they have breast cancer and their mother did, their grandmother did, and both of them died from i t , and so they're going to. So what would you say to someone like that from your experience—of just not belieiving that this would happen to you? M: That's very d i f f i c u l t to say. Because I didn't have a specific feeling about wanting to l i v e . Just not believing that I would die. Death seemed like i t was unreal. It was something that happened to other people, but not to me. Not that I had grandiose feelings that I was immortal, or anything. I just never thought about i t . . . I've never been afraid of dying. I wonder what i t would be like to 216 die, as if I am curious to find out! It's almost as if I wanted to experience i t , just to see what i t was li k e ! Having come to terms with the fact that I'm not afraid of dying--I don't think you can really come to terms with l i v i n g u n t i l you're not afaid of dying. Because i f you're always livi n g being frightened of death, for whatever reason... A l l my l i f e I've been looking for a reason for why I'm s t i l l alive, having been told, not in so many words, "You're going to die", but one had the very strong sense that certain people in the medical f i e l d didn't suspect that I'd be around for too much longer. And I s t i l l was. And I have been looking for some blinding flash of inspiration. Why am I s t i l l here? There's a reason. I think I've found the reason. It's to get this book written. I think I can actually contribute something... I didn't realize u n t i l I started writing this book, and getting involved in doing the research at the hospital, I didn't realize how many people there were out there who weren't like me. Who did fear death. Who were having terrible times emotionally and mentally, because they couldn't come to terms with i t . I didn't realise that i t was like that with DO many people. I: Does the concept of a journey make sense to you? The idea of a c r i s i s that happens in your l i f e so that you know that death can happen; i t can happen to me; and you begin to change and see l i f e in a different way, relationships in a different way, your work in the world in a different way. M: I had to change a lot of the things that I wanted to do. I had to change my attitude, because I wasn't able to do what I always wanted to do. I had to adjust to making the most of a career that I hadn't wanted to do. I had to adjust to being on my own instead of being married and bringing up children like a l l my friends were. I made the best that I could of i t , and I enjoyed as much of i t as I could. I think I basically loved l i f e ! Just being there! I had good friends. That always made a difference. I love nature. I love people. I didn't mind hard work... But I never had a temper in those days. I didn't express feelings of anger or frustration or hurt. I kept a lot of that to myself. Even at work I was afraid to let other people see that I was ir r i t a t e d or angry or that I wasn't pleased with them. That came later. I: What do you think brought about that change so that you were able to bring those inside feelings out more? M: I think I learned a lot when I went to that group therapy session after I had a sort of a breakdown. I think that was a fantastic 217 experience to hear other people express themselves freely, whereas I had never been able to. To hear what terrible things had happened to them in their lives. To hear them encouraged to let i t out. To shout and scream and do what you wanted. Don't bottle i t a l l up! And i t made me feel, heavens! after what they've gone through, what I've got is v i r t u a l l y nothing. Why should I be feeling so depressed and sorry for myself? M: Believing in my own survival. Yes! that was important. It never occured to me that I wouldn't. I: Yes, on one level i t seemed like i t didn't, yet on another level i t seemed a sort of motivation in the background to be doing more, li v i n g more. M: Yes, that's really strange, because the thought of death was always there. It was something I didn't accept would happen, and yet i f i t was going to happen, then I was going to do as much as I could before i t happened. A lot of contradictions there, aren't there? It's like happiness and unhappiness. You can't appreciate happiness unless you've been very unhappy... Maybe I'm wrong. Maybe there's a different quality to the happiness. Although you can be very happy and everything goes smoothly and great for you, perhaps you don't experience that real peak i f you haven't known the bottom end. It's a superlative. I mean comparatives are okay. You're either happy or unhappy, or there's a bit in between, and they never ever get right down there where they're thinking of suicide because nothing means anything anymore. That's really going down to the dredges. And everybody doesn't have to go that far, thank goodness. But neither at the other end do they experience the actual exquisiteness, the ecstasy!... When I look back on being a child, before I had any problems, I loved the countryside, I had a lot of good friends at school, and I enjoyed what I was doing, but I can't remember feeling that I f e l t as deeply about things as I did once I had the knowledge that I might not be around. I: You didn't appreciate or value those things in the same deep way? M: No! I f e l t I wanted to see a l l these things. When I thought I might be dying I had to go and v i s i t a l l my friends, a l l the people I wanted to see for one last time. But thinking that there's a p o s s i b i l i t y that you might die—even i f you don't really accept that you w i l l — g i v e s you a much deeper feeling about things. My friendships have a l l been deepened. There's a different meaning to the friendship! I really value the friendship perhaps more because they always stood by me, whatever kind of problems I had. They're not just surface friendships. 218 I: Has your relationship with Denny [your husband] changed? Deepened, strengthened by the d i f f i c u l t i e s that you've both been through? M: Yes, I think so. We both get irr i t a t e d with each other sometimes, and we have l i t t l e blow-ups... But I think i f i t hadn't been for having so many friends, I don't know what I would have done, really. Especially when I was on my own. They have meant more to me than anything! You have experiences with friends which are just a highlight of your l i f e . These sort of things make l i f e a very exciting thing! I: Were you inspired by other cancer survivors? M: I never knew any un t i l I started this book, and got involved with CanSurmount, in 1987. I lived a l l these years and never really thought actively about other survivors. I: You would have be more inspired by other patients? Were there other people you inspired you, other patients in the hospital? Others going through d i f f i c u l t i e s ? M: That group therapy session impacted me more than anything. When I heard of the te r r i b l e , terrible things that they had suffered. The ways their parents or husbands or wives had treated them. It was amazing that they managed to be sane at a l l ! I guess the physical hadn't as much impact on me as this mental thing that they'd experienced. I couldn't imagine how they'd survived! I thought i t was miraculous! What I'd had seemed so slight in comparison. I: Was that quite some time ago? M: That was '72. [Eighteen years ago.] I: Can you t e l l me something about your being willing to take risks? M: I wasn't so willing to take risks until I thought maybe I wouldn't be around much longer, and then I started to do a l l sorts of things that I might not have done. I: What does i t mean to be thinking of others instead of yourself? M: I'd always been brought up to think of others before myself. That was an ingrained thing. And that's one thing that was very d i f f i c u l t for me, when you start learning some psychology. That the most important person in your l i f e is you. You are responsible for your own 219 happiness. You can't depend on other people for i t . I'd always been brought up to consider other people before myself. I'd never learned to say no to anybody. They came f i r s t . But I think you mean i t differently... Looking back, I think I would have liked to have done E.S.L.— teaching English as a second language. Right from when i t was f i r s t i nitiated and became necessary... It is interesting. I was reading in that l i t t l e booklet how many cancer survivors went back and did volunteer work of some kind, or started some groups, or wanted to help other people who'd had the same problem... That's why I think i t could be wonderful i f the s t a t i s t i c s are one in every two get cancer! I: What does uniqueness mean to you? M: I think I used to do things and say things and behave a lot on the basis of what other people would think of me... I think that the group therapy session made a big difference. The really startling thing that came out of i t was knowing that somebody didn't like me, and said so, and they didn't even know me. There was a woman who stood up and said, "I hate you!" And she didn't even know me. That really made a big impression on me. And I started to be a lot more open-minded. I met people who had had abortions, were lesbians, were homosexuals, did take drugs, did do a l l these things that I used to think were t e r r i b l e . And I realized that they were people and they had problems. And why they did these things. And I started to be more open and speak up for myself which I never had done, without worrying about whether people were going to like me a l l the time. And I also realized that I couldn't like everybody, either. There are some people that you just don't l i k e , for no particular reason. I used to feel t e r r i b l y upset if I f e l t that somebody didn't like me. And then I realized that i t was quite okay not to like somebody and for somebody not to like me. It makes l i f e a lot easier for yourself, too. I: How do you go about showing people who have cancer that there is another way to think and to be? M: I try to encourage them to think actively that a l l is not bad because you've got cancer. You may meet new friends, new things might happen to you, you can widen your horizons, your children may become more caring, your husband may realize how much he cares for you, i t might bring you closer together, you'll start to do things that you would never have done otherwise. In fact do!! Do as much as you can. Everybody with cancer doesn't die. Look at me, I've been here for 35 years and I wasn't supposed to live beyond 20!! And I'm s t i l l here, talking to you! And if you could see me—if I'm talking on the phone— you'd never think I was nearly 50. 220 You might not be as fortunate. But i f you have only five years, let them be good years. If you have only five months, let them be five good months! Do as much as you can as long as you're able. What would you like to with the rest of your l i f e , however much of i t you've got left? What would you really, really want to do, and why haven't you done it? And what's stopping you doing it? And then go ahead and do i t . And then i f you don't have any more time, everybody you know w i l l have had a really good experience and a happy time, and they'll feel really good because they'll know that you have done something you really really wanted to do. 221 AUTOBIOGRAPHY (Case M) The following are random exceprts fronm M's book, which she wanted included, as she thought they best expressed the thoughts and feelings around her i l l n e s s . My l i f e was scattered with very distinct choices mostly brought about as a result of my cancer. Thinking of the depressions that resulted from some of the choices, i t seemed that I had often made the wrong choice— but who knows whether the other path might have been sunnier? And i f indeed my story does become an inspiration or a help to even one other person, perhaps that might be the elusive reason which I have been looking for for so many years—the reason why, against so many odds, God has kept me alive. At no time did I ever accept that I could die. I wanted to understand how God could love people and yet allow such terrible things to happen to them. As time passed I have wondered the same thing again and again yet, at the same time, I am sure that over the years God has indeed been helping me in a different way—giving me the strength and the determination to survive in spite of the times when i t seemed that everything was against my doing so. To me, ignorance was never b l i s s . I preferred to face something that I knew about, even i f the knowledge did sound horrifying: i t was far more frightening not to know what was going on. I think the determination of that old lady [an 89-year-old woman, who was determined to walk on her new false leg into her ninetieth birthday party], and the definite idea of setting a goal within an achievable time frame, were lessons I learned from her which have lasted me a l l my l i f e . I had to see New York now in case there wasn't going to be a later. Looking back i t seems I have lived the rest of my l i f e on that basis. I am sure I have done more with my l i f e — s e e n more, achieved more, travelled more—than I would ever have done had I not had cancer.... 222 I was assured that I had already endured much worse than this, and i f this treatment was to save my l i f e then surely i t was worth i t to put up with a l i t t l e more discomfort for a few weeks. If you look back on every unpleasant experience in l i f e , i t never seems half as bad later. [Another patient] helped me to realize that God had not forsaken me: He had helped me survive so much thus far and was continuing to do s o — I was s t i l l alive, and what a wonderful world i t was that I had been privileged to remain in. The thought that I could have died, probably should have died, was s t i l l rather unreal. The fact that I hadn't, only made me think...that everyone else had been wrong. I also remember learning a very great lesson at my father's f u n e r a l — that i s , to t e l l people how much you appreciate them while they are s t i l l a live. I have never been a quitter. In my f i r s t two months in Vancouver I grew up a tremendous amount emotionally and learnt that I had to stand up for myself in ways I never had before. Over the years I've discovered that out of any disaster there always comes some compensation. I learnt an enormous lesson from my experience with D: that not everyone was going to like me, with or without reason, and I didn't have to try to like everyone. I can't imagine why i t took me so long to discover this. How many times did I ask myself why God had kept me around? I wasn't very religious but a small voice in the far recesses of my mind kept t e l l i n g me that I must have been saved for some reason and I must try to find out what i t was. Since my most recent brush with death, I had ever so slowly started to develop a different a t t i t u d e — a case of "do i t now" particularly as far as travelling was concerned... I expanded my line of thought: Do i t now because there might not be a next year regarding everything and not just travelling. 223 I began making goals for myself, and as soon as one was accomplished I set another—mileposts in my l i f e to be reached, conquered or enjoyed; such as a course to be completed, or a holiday. I kept making shorter-term plans so that I had something to look forward to, such as a special outing, a movie, or going out to dinner. Without consciously recognizing i t then, I was starting to give myself more reasons to live again. It proved to me that negativism breeded negativism: everything that can go wrong w i l l go wrong almost as if one has wished i t upon oneself, whereas a positive attitude fosters good feelings from everyone. Do as much with your l i f e as possible. In fact, do more because you have cancer than you would have done without i t . Hopefully you'll be lucky and conquer your cancer, but i f not, a l l the more reason to get as much out of your l i f e as you can while you are s t i l l able to. Although I feel i t ' s a great help to feel comfortable about death, in most cases patients need to have some motivation to live and not just give up. I, personally, feel that the strongest motivator is to have a warm, close relationship, to know that someone cares. I once read something to the effect that the whole purpose of l i f e is to live i t . To reach out, to experience as much as possible, to love more, to touch more, feel more, enjoy more, even to hate more and feel anger. Only by experiencing some of the negative emotions can we truly appreciate the positive ones. There is another volunteer a c t i v i t y which keeps me busy and makes me feel that I am f i n a l l y contributing to this world. (Perhaps these are some of the reasons the Lord kept me around.) I became involved with teaching new Canadian students English as a second language... I knew this is what I should have been doing instead of enduring a l l those years of misery. I am now grateful that l i f e at the office became so miserable that i t forced me to leave. I feel that a positive attitude of mind can be beneficial in absolutely everything, and that any medical treatment w i l l have a better chance i f the patient is less depressed and stressful. 224 I£ you feel good today, don't worry about tomorrow. Get out there and make the most of today. It seemed to me that having had cancer resulted in enriching the lives of the people I met, particularly during my research into support groups. For so many years I feel I have been driven by an urge to do and see as much as possible... I think I have already done far more with my l i f e than I would have had I not had cancer, and for that perhaps I should thank cancer for having come into my l i f e . There has been a great deal of suffering but there has also been a tremendous amount of happiness which I can appreciate a l l the more. In spite of my positive attitude toward l i f e nowadays, at the back of my mind there is always the thought that my monster may be back... But whatever the future may hold, I know that I have had a very f u l l l i f e — which has been extended by at least thirty years more than the medical profession expected; I have been extremely fortunate to have acquired so many wonderful friends en route, and I am more certain than ever that some higher Power has been looking after me. The one deep sorrow I have is not having been able to have children of my own, especially now that I know I would have lived long enough to have brought them up... 225 TRANSCRIPT II (Case P) A f i r s t interview with P. did not turn out. This second interview lacks some of the comprehensiveness of the original interview, but here P. was more comfortable and censored his feelings less. I: So, thing's have changed for you a l i t t l e bit since last I was here. [P. has had another relapse, and is back on active treatment.] That was back in January, wasn't it? Today I'd like to talk with you again about your recovery from cancer and how i t has changed your l i f e . P: Well, I guess I'm in a kind of depressed mood. As soon as I think about cancer I get depressed, and then I get busy with my own things. Yes, I'm back on chemotherapy. I didn't mind the regime on chemotherapy when I was in hospital for a week, and off for a week. Or hosital for four days, and then off for a week. I r e a l l l y like that. I don't have to worry about anything when I'm in hospital. I take the therapy quite well... It's probably a good thing that I'm around the house a bit more and I can do a few things. But i t ' s not as relaxing being around the house. I see a l l the things that I haven't done around the house. A l l the things that I should be doing... Well, I've been to a retreat at Hope [a cancer patient self-help group]. Hope's f i r s t weekend retreat. I'm going to go to a five day one up at Cortes Island. It's the f i r s t time I've ever been to Cortes Island. And that's May 5 to 10. Hollyhock Farm. It's going to be different from the weekend thing. Maybe there'll be more meditation, I hope. I: Is the meditation a new direction for you, or a direction you want to go in more? P: I guess a direction I want to go in more. I think of meditation and prayer as being very similar. And the cancer hasn't gone away. It seems to be getting worse. The jaundice has come back again in February. Not quite as bad since when we talked earlier. It's s t i l l with me. You know, I've had a l l this chemotherapy. Four treatments. I'd like i t to be gone. And we're on the last type of chemotherapy... I: Is this the f i r s t recurrence that you've had? P: Hell, no, not with cancer! I've had a continual battle with i t for 226 the whole time. It's just the f i r s t treatments that went so well. With the thing that went right into the artery, into the l i v e r . And I've always been disappointed that they didn't do that again... What else? I'm looking f a i r l y normal, I think. Sometimes when I look in the mirror I don't look so dark, and I certainly don't look yellow... I: Does not being able to work, as you were before, does that bother you? P: Oh no, I've got lots of things that I want to do around here. It bothers me to some extent, that i t would be nice earning money, but I earned a couple of thousand in the six weeks that I worked so far this year, as I've noticed on the income tax.... But I was also worried about my medical. But they've upped the allowance for premium medical assistance to $14,000. So I could work a bit more... I: Do you have thoughts of maybe not l i v i n g through the year? P: Oh yeah. I don't know how long i t takes to die once the chemotherapy doesn't work anymore. I assume something under a year. They said right from the beginning that they thought I had less than two years. And then they added to five. Just to cover themselves. And now they're saying... I: I don't think we r e a l l y know. Some of the people I've talked to, some of them were told 20 years ago that there wasn't much hope, that there wasn't a treatment that would make a difference. P: I'd like to know what happens. They'd like to know, too. A lot of people would like to know why they're l i v i n g and others aren't... I'd like to have an S.R.—a spontaneous remission. But I've never had a remission. Whenever I was on chemotherapy the CA counts went up. There was never a levelling off... I: Have you thought of that, why you're s t i l l alive when they didn't think you would be? P: Well, after a few months or a year they changed i t . "Well, you've got slow cancer." So the assumption i s , i f we had known you had slow cancer, we would have changed the emphasis to five years anyway. I gather they don't know the difference... Sure, I wish diet worked. I'm not very good at staying on a diet. Especially with something like macrobiotics, where there is so much controversy about whether i t works anyway. But I sure have changed eating habits a lot, compared to two years 227 ago. I certainly never had anything with miso in i t before. Just more vegetables for one thing; less meat, less dairy products. Dairy products were a staple part of my l i f e . I just loved them! I s t i l l do. But I hardly drink any milk now. It's just practically gone compared to before... Last week I sort of went off i t . Several times. I went out to dinner. I didn't feel very comfortable about i t , and i t upset myself, so i t kind of confirmed that I don't enjoy those things anymore. So about the only non-macrobiotic thing I had today at lunch was margarine, on one piece of bread. Oh, and I took jam, I guess. The jam, though, is special. It comes from my friend in Bella Coola. She says the English people c a l l i t stinkleberry. I've never heard of i t . It's a nice jam. If i t has sugar in i t i t ' s not macrobiotic at a l l . So the jam and the margarine were the only non-macrobiotic things I took at lunch today... And this morning I had some cereal with some milk on i t . Usually I just have porridge and I don't take any milk. Quite a change from my poached eggs and two pieces of toast with jam and margarine. Twice a week anyway. I: Did you have somebody teach you about how to change your diet? P: Yes and no. I went to two lessons. The f i r s t cooking lessons I've ever taken were macrobiotic. But they only had two sessions. It seems very l i t t l e . . . I: Do you think you'd mind going over some of what we talked about last time? P: No, i f you can remind me... I don't usually remember conversations. I: Last time we started out talking about what was happening in your l i f e at the time that you were f i r s t diagnosed. P: Oh, we have to go over that? That's the most depressing part of my whole l i f e ! . . . I was unemployed. And I consider myself unemployed since '82, even though I was a substitute teacher for part of that time, and I had a six month contract between January and June '84. So I was working then. But i t ' s always seemed like a high stress time for just years. Four years anyway... Getting my teaching certificate was also a stress. And then losing the job. And finding out later that the reason I'd lost i t was because I didn't stand up for myself well enough. I didn't know the game and 228 play i t . If I hadn't signed a paper... I was told by the principal that by signing this piece of paper that said I was an unsatisfactory teacher, a l l that i t was saying was that I had read the piece of paper. Well, they threw i t in ray face and said, "Look you've agreed that you're an unsatisfactory teacher and signed i t . " But s t i l l , I feel so trapped! That's just a part of my anger. It just kind of grew. I mean, i t was there before, because of the failures I'd had in my l i f e . It just blossomed after that. That last thing with the Vancouver school board was November '85. When I'd gone in to ask about getting back on as a substitute, they said, "I don't need to have anything more to do with you." Some words to that effect. "Let's leave i t , period." That just made me really angry. Feeling very powerless... Anyway, the pains really came back, and there was more blood in my stool, after that, Christmas was just a very uncomfortable time. I always put things off. So, I said, "Oh well, I ' l l go to see the doctor after Christmas. I've had this before. Over the last I don't know how many years, but i t always went away." And then dad was getting worse. Multiple myeloma, another type of cancer. And he had lasted a long time. He'd lasted eight years. But he'd had a remission. For three years. When he didn't have to have chemotherapy... So I was volunteering at home. Trying to look after him. And I was volunteering at the church. And I was volunteering at Vancouver Elementary School Teachers. And just really f e l t burned out. So i t was kind of a r e l i e f to have cancer and to have an excuse for not doing anything. So I was diagnosed in February of '86. Just after a terrible time... Dad maybe forced himself to get up for Christmas, got dressed. That was the last time. I was diagnosed in February, and my f i r s t operation was March 4. So I was home. I was in hospital a week I guess, after that, not very much anyway. And dad died. April 4. I took him down to the hospital. I was in the ambulance with him. He was having trouble going to the bathroom, and his back really hurt. He died the next night. It was around like about 24 hours... And I had my second operation, which was an attempted liver wedge removal. It was never done because there were metastases a l l over. On May 16 of that year. Chemotherapy started in June. That was also a nice session of chemotherapy. I was there for six days. It was five bags, but you never get out of there in five days. Because they do 229 tests, and then you wait for them. And then you get a bag a day, so i t ' s the sixth day before you even finish the f i f t h bag. And then you clean up and wash. Because you can't have a shower or anything when you have tubes running in you... So I didn't mind that. Well, you always mind a b i t . But, I had three weeks off! I thought that was really good. They would t e l l me that I was progressing after each time I went in. And i t went down to below normal — the CA count. I was free! They couldn't see any cancer at the end of that. That was just a r e l i e f ! A r e l i e f and a release and just kind of everything!! Just lovely. I had very l i t t l e effects, because the stuff wasn't pumped through my stomach and my whole body, i t just went straight to the l i v e r . . . I: Sounds almost like a bit of a paradox in a way... When you found out you had cancer, there was something that was almost a r e l i e f in that... P: Yes!! I: ...yet to be be responding well from the treatment and doing better was also a r e l i e f . P: Yeah, well even though dad had had cancer, he hadn't died, when I f i r s t was told. And the other thing was that he'd had a remission. And the other thing was that I was even younger. I didn't have the same type. He had a multiple myeloma. It can be a pretty deadly type. Not so much as colon cancer. Well, colon cancer can be, like a l l cancers... It depends when they find out. It wasn't unt i l you see, in March, when they did the operation and the tests showed that the cancer had spread through the lymph sytem, and they had found the metastases in my l i v e r . It had spread. I didn't know that until March sometime that i t was even more hopeless than i t was at f i r s t . And then dad did die. They tried to save him in an operation, but i t didn't work. And so I was kind of going downhill, and then a l l of a sudden I came up h i l l . Chemotherapy worked. And I was feeling pretty good. I: Were you starting to do anything different at that time? Were you going to church throughout that period? P: Yes, church hasn't changed. I've changed churches after that. But church hasn't changed. It wasn't unt i l about '87 that I changed churches. Because of the music... I: Yes, I remember last time we talked you sang a few lines of that new gospel music you liked. What was it? "Ain't Got Time to Die". P: Oh yes! That's right... I: Looking back, would you say that your l i f e has changed over the last 230 four years? Is i t different now? P: Of course! Well, I have less energy, I have less hope, I have less future. I know they say you have to make long range plans. Well, I find i t very d i f f i c u l t . Thinking a month ahead is about as far as I can make i t . . . If I was thinking longer, I would be looking at getting a job as a full-time teacher in September. So that means I got to get back to work now and impress people that I'm there and available. Well, I do want to go back, but when I feel I have a lot more strength. I'm just weaker. Here's a paradox, too. If I was really gung-ho I'd be out doing these things, but I also think I am less pushy, less into the rut. I don't know. Maybe I always was. I was never much of a good team player. The person who just does his job and doesn't say anything. I never was much like that... I: Yes, I remember you talking before about things that were important to you were different than they seemed to be for other people. P: Yeah, generally speaking. I just got into an argument today with the person on the other end of the line, because of service charges and things I don't think I should be charged. And I didn't receive my statement for the month. "I can't do i t for you now unless there's a ten dollar service charge. We have to type i t up." Unless they type i t up a l l by themselves. As i f that was such a big job. Well before they could just photocopy something. A l l the service that used to be there for part of a job is now being charged, every nickel and dime. Boy, does that bug me! It certainly bugs me about credit unions, because I think credit unions are different than banks, and that's why I went there. It's just part of the whole sickening business. You just can't trust your government leaders. You can't trust anybody. You can't trust any institution because they're just out to do the least they possibly can in the cheapest way they can do i t . It's part of the whole sickening... I can get quite angry about this. And I notice that when I'm under chemotherapy my temper can flare very easily. I think that Canadians are too wimpy anyway. We do need to complain more and stand up for ourselves. We, Canadians, need to do more of that, much more of that—complaining, and not just muttering and taking i t . . . I just heard on the radio or the TV--Wendy Mesley or one of the others on C.B.C.—that on the round-up that the public was far ahead of the politicians on the environment. That doesn't seem right. There may not be any future for me with cancer, but i t ' s unbearable that there may not be any future for the rest of us, the children, my nieces and nephews, whatever, just because we're messing up the world so much. 231 Vancouver's water is not as clean as i t was ten or twenty years ago. And I know that because of the fish tanks. We store water before we put i t in the fish tanks, and the water is definitely d i r t i e r than i t was twenty years ago. It doesn't taste the same, either. You go up to Bella Coola now and there's a big difference, whereas Vancouver water was pristine. It was just as good as anywhere... I don't think i t should be. Like the stupid decision to build that gas pipeline through a watershed. Asshole things like that! I didn't use to swear before I had cancer. Before I was unemployed, actually. Went through navy training with lots of crazy people, but I could just slough i t off. But know I feel like saying, "Fuck them a l l ! " I don't swear like that. Never did swear like that. I'm much more prepared to swear in these situations. I s t i l l don't say that f-word when I bang my finger. I don't even like to say shit... [Talk about his anger with the p o l i t i c a l system]. One good thing about this steaming off is you get rid of i t for a few minutes, unt i l i t a l l wells back up inside of me again. Anyway, a lot of spleen, or whatever the word is for poison thoughts or angry thoughts or disagreement with everything... There's a lot of things I think that are stupid. I suppose i f I was really smart I wouldn't allow those things to get to me. Realize that they're somebody else's problem. At least that what's some people have tried to suggest. I just hurt myself... Especially i f I bury i t a l l . Which is what I do most of the time. I: Do you think there's a way of doing something about i t , to actually turn those thoughts into actions? P: Well, no. If everybody complained, and everybody said what they f e l t , and i f people read the newspapers... Rachael Carson and her Silent spring—1955, I think. She told us a l l then what was going to happen, and v i r t u a l l y everything that she talked about then has come true... One sign of getting s l i g h t l y better is that I complain more. When I'm really sick I just don't have any energy. Also, there's parts of my brain that seem to shut down. It's hard enough now for me to put a whole few sentences together. Well, I can't find words. When I'm rea l l y well i t ' s easier to find words. I: Is i t being on the chemotherapy that makes you that way? P: Oh yes! And being sick, too. I think in the processes of death 232 there's less blood that gets to some parts of the brain. And things just start shutting down a l l over the place. And then the chemotherapy... I: Can you t e l l the difference between the effects of the cancer and the effects of the chemotherapy? P: No and yes. The chemo's worse. You don't notice the other processes... I can't read... And then the chemotherapy starts bringing i t back to you so that I can read or I can walk around the block. I've hardly done any exercise in the last few months. Everything i s . . . I was downtown for the f i r s t time in months. Back aching and everything, just after a couple of hours of walking around. I went to the record stores, because I haven't been in the record stores for years. And I went to Sam the Record Man, and A & A. Those are two new stores that I don't ever remember being around for c l a s s i c a l music... Only problem is that I'm s t i l l on L.P.'s and everybody else has gone to C.D.'s. If I was working and stuff, I probably would, too. Because that would be part of what I would c a l l minimum standard of l i v i n g . The quality of music, the accoustical environment is very important... So I would spend the money i f I wanted to, and I guess I'm not wanting to. I: What's become more of a pr i o r i t y now? P: I was going to say try and be happy... I had a really good time on the retreat. The only thing that was really d i f f i c u l t was the food. I'm not disciplined enough to say I'm not going to eat that. It was very fatty, and pork. Old-fashioned... Well, as the people at Hope said, they did offer a whole lot of f r u i t after we asked them. Okay, they did make that change. They also offered wholewheat pancakes. I mean the f i r s t breakfast was scrambled eggs and sausages. I never liked sausages, anyway. I'd been a bacon man... One of the things I s t i l l like doing is just lying down on the back porch. This is about the hottest part of the house... At the retreat, I took in the lecture that I wanted to take in, and i t was really good. And then I didn't go to the other lectures. I went swimming. And then I slept. And then I stayed up late playing bridge. I just loved i t ! It was just great!! And the weather cooperated. It was nice weather. And the s m e l l — j u s t being in the countryside with trees and grass. It was in a big acreage... At Easter Seal camp. And they had a heated swimming pool. That was really nice! So I'm hoping Cortes Island w i l l have some of the same, where I w i l l be able to play some bridge, have a good time, and do more meditation. Because I didn't do that much meditation. And the food is going to be vegetarian. And that's even better... I: Is social time for you more important? 233 P: Oh yeah. Because I don't get out. I don't do enough with getting out of the house. I should be calling up girlfriends and doing different things. Even walking. Do anything. But I just haven't done that sort of risking and making a commitment to do something. I: Why is that, do you think? P: Well, i t ' s a combination of feeling too tired by anytime after dinner. But i t ' s also that hopelessness. So i t ' s a l l kind of mixed up... So I don't know how I'm going to make myself happy. But I know working in the garden brings me pleasure... I started doing something that I'd been putting off for months, and that was getting an e l e c t r i c a l cord, a special type. Number 10's. Most garden variety cords that you put on your extension — e l e c t r i c mowers — is number 14. A