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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 S c h o o l , 1982  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS 'FOR THE DEGREE OF MASTER OF ARTS in THE FACULTY OF GRADUATE STUDIES Department of C o u n s e l l i n g P s y c h o l o g y  We a c c e p t t h i s t h e s i s as conforming to the r e q u i r e d s t a n d a r d  THE UNIVERSITY OF BRITISH COLUMBIA September 1990 ©  Wendy F a i r b a n k s , 1990  In  presenting  degree  at the  this  thesis  in  University of  partial fulfilment  of  department  this thesis for or  by  his  or  the  requirements  for  an  scholarly her  I further agree that permission for  purposes  may be granted  representatives.  It  is  permission.  Counselling  The University of British Columbia Vancouver, Canada Date  DE-6 (2/88)  September  19,  1990  Psychology  extensive  by the head of  understood  that  publication of this thesis for financial gain shall not be allowed without  Department of  advanced  British Columbia, I agree that the Library shall make it  freely available for reference and study. copying  of  copying  my or  my written  ABSTRACT  The purpose of t h i s study was to understand transformation i n s u r v i v i n g terminal cancer.  the meaning of  An e x i s t e n t i a l -  phenomenological approach was used to interview f i v e p a r t i c i p a n t s who had l i v e d at least f i v e years beyond the diagnosis of widely metastatic or terminal cancer. Review of the l i t e r a t u r e which addressed suggested  the issue of transformation  that l i f e - t h r e a t e n i n g i l l n e s s i s an opportunity for growth.  There are many c r o s s - c u l t u r a l accounts  of transformation, and many  studies of survivorship q u a l i t i e s , but l i t t l e research into the transformation process as i t i s experienced  by cancer s u r v i v o r s .  P a r t i c i p a n t s t o l d the s t o r y of t h e i r recovery from cancer and how i t changed t h e i r l i v e s .  Cochran's (1986) dramaturgical approach  provided the model for capturing the meaning of t h i s experience form.  Each interview lasted from 2 / 1  audio-recorded  and transcribed.  C o l a i z z i ' s (1978) method.  2  to 5 hours.  i n story  Interviews were  Analysis of the interviews followed  S i g n i f i c a n t statements were extracted from  the protocols, themes were formulated, and a d e s c r i p t i o n of the experience was written. interviews.  Other sources of data were used i n addition to  An autobiography  and a s e r i e s of a r t i c l e s were c o l l e c t e d  from two p a r t i c i p a n t s .  This written material was analyzed  i n the same  way as the interviews.  The experience of the researcher also served as  data, and was analyzed through r e f l e c t i v e and d e s c r i p t i v e methods. Conducting  interviews, s o l i c i t i n g written descriptions and including the  iii  researcher's experience  allowed  the data to be more broadly supported.  Results of the study were validated by the p a r t i c i p a n t s in a second interview.  They confirmed that the 38 themes and the common pattern of  transformation derived from the f i v e p a r t i c i p a n t s accurately r e f l e c t e d their own  experience.  The r e s u l t s indicated that psychological transformation of terminal cancer is a s p i r i t u a l journey. threatening disease to become an opportunity growth, people can transform  In allowing a  i n survivors  life-  for personal awareness and  their i l l n e s s into a s p i r i t u a l  teaching.  Serious i l l n e s s can teach people about the meaning of life., and their own  l i v e s purpose and d i r e c t i o n .  give  Through t h i s a f f i r m a t i o n of  and by following t h e i r purpose and path, healing can occur.  life,  This healing  not only moves people toward wholeness, but i t holds the p o t e n t i a l for transforming  and healing the problems of others.  This pattern of transformation nature of support has  has p r a c t i c a l implications for the  useful for people experiencing a health c r i s i s ,  and  implications for the designing of e f f e c t i v e psychosocial support  cancer patients.  for  iv  TABLE OF CONTENTS  Page Abstract  i i  Table of Contents  Acknowledgements  iv  v i i  CHAPTER 1:  INTRODUCTION  1  CHAPTER 2:  LITERATURE REVIEW  4  Physical Disciplines Psychobiology Mind-body h e a l i n g Behavioural Medicine A c t i v a t i n g the w i l l to l i v e Coping O p p o r t u n i t y f o r change Cancer and c h r o n i c d i s e a s e M a l i g n a n t and b e n i g n d i s e a s e Long-term s u r v i v o r s and s h o r t - t e r m s u r v i v o r s Psychological intervention  5 5 6 8 8 10 12 13 13 14 15  Psychological Disciplines Existential-phenomenology S e a r c h f o r meaning Self-discovery Mastery Jungian Psychology A c t i v a t i n g the inner healer A f f i r m i n g one's d e s t i n y Becoming whole Neo-Jungian Psychology Self-understanding Transpersonal Psychology Hero's j o u r n e y S p i r i t u a l emergence R i t e of passage  17 17 17 19 21 24 24 25 26 28 28 29 30 31 33  V  Page Spiritual Disciplines Amerindian Philosophy Shamanistic i n i t i a t i o n Buddhist Philosophy Archetypal'journey Manifesting the divine Summary of the transformative journey S p i r i t u a l medicine Awakening C a l l for aliveness Recovering the soul Manifesting love  34 34 34 37 37 39 40 41 42 44 46 48  Summary and C r i t i q u e Physical D i s c i p l i n e s Assumptions Criticisms Psychological D i s c i p l i n e s Assumptions Criticisms Spiritual Disciplines Asumptions Criticisms  48 48 48 50 51 51 52 52 52 53  CHAPTER 3:  METHOD  Existential-phenomenological Research Dramaturgical Approach Co-researchers Selection of Co-researchers Demographic Information Interviews The F i r s t Interviews Preamble Interview questions The V a l i d a t i o n Interview Other Descriptive Methods Procedure Protocol Analysis  55 55 57 58 59 61 63 63 65 65 65 66 68 69  vi  Page  CHAPTER 4:  RESULTS  E x p e r i e n c e of t h e R e s e a r c h e r Interviews I n i t i a l Interviews Validation Interview The Case of P. Context f o r A n a l y s i s C l u s t e r s of Themes Themes Phenomenological D e s c r i p t i o n Essential Structure  CHAPTER 5:  DISCUSSION  L i m i t a t i o n s o f t h e Study Theoretical Implications Practical Implications I m p l i c a t i o n s f o r Further Research Summary  73 73 75 75 77 78 84 86 87 115 129  133 133 134 139 141 142  REFERENCES  145  APPENDIX  155  i  vii  ACKNOWLEDGEMENTS  I am g r a t e f u l f o r the f i v e i n d i v i d u a l s who shared t h e i r story and t h e i r enthusism for l i f e ;  for family, friends and Doug, whose support through the years of t h i s project help l i f t my s p i r i t s ;  for the s o l i d 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 i s 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 live.  According to the story he entered his c l o i s t e r vowing not to  emerge u n t i l he was either enlightened or dead.  A l l we know i s that he  became one of the most famous teachers of his time (Moss, 1986, This simple story suggests several things.  p.286).  First, illness is  considered a meaningful event, of personal s i g n i f i c a n c e and c o l l e c t i v e value.  Second, i n surviving a l i f e - t h r e a t e n i n g disease a person  may  undergo a transformation. And t h i r d , t h i s 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 t h e i r l i f e Press, 1990).  (Canadian  Despite e a r l i e r detection of the disease, and more  aggressive and t e c h n o l o g i c a l l y sophisticated treatment, the death rate from cancer i s increasing (Lockhart, 1977). leading cause of death i n North America. that one in every four men,  Cancer i s now the second  S t a t i s t i c s Canada figures show  and one in every five women w i l l die from  the disease (1990). There i s c u r r e n t l y a surge of i n t e r e s t in the way with a l i f e - t h r e a t e n i n g i l l n e s s .  i n d i v i d u a l s cope  A number of studies suggest that there  2  are c e r t a i n " d i s e a s e - f i g h t i n g " a t t i t u d e s that may s i g n i f i c a n t l y a l t e r the course of the disease (Cunningham, 1987).  Other studies indicate  that cancer patients who s i g n i f i c a n t l y o u t l i v e their prognosis have very d i f f e r e n t a t t i t u d e s and behaviours  from those with the same prognosis  who do not l i v e long (Achterberg, Simonton, & Simonton, 1977; Derogatis, Abeloff, & Melisaratos, 1979; Hislop, Waxier, Coldman, Elwood, & Kan, 1987;  Weisman & Worden, 1985).  And yet, while there i s much anecdotal  and autobiographical evidence, there i s very l i t t l e d i r e c t research that looks at what i t means to survive a l i f e - t h r e a t e n i n g i l l n e s s and be changed by i t .  This i s the topic of the present study.  The purpose of t h i s study i s to illuminate the changes and personal growth that have occurred i n survivors of terminal cancer. perspective of t h i s study i s that cancer  The  i s a path of personal  transformation and a search for one's essence.  The process of healing a  l i f e - t h r e a t e n i n g disease i s p r i m a r i l y a s p i r i t u a l journey.  What i s  meant by s p i r i t u a l journey i s a pilgrimage that i s s p i r i t e d and f u l l of v i t a l i t y , as well as one that connects people to the a c t i v a t i n g or e s s e n t i a l p r i n c i p l e s of t h e i r l i v e s . core of t h e i r being.  This journey takes people to the  I t i s proposed that some survivors of terminal  cancer have undergone r a d i c a l psychological transformation. " r a d i c a l psychological transformation"  By the term  I am r e f e r r i n g to a healing  process which goes beyond the r e s t o r a t i o n of mental and physical health, and  involves the process of becoming a whole and individuated person.  Healing i s 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 c l e a r l y show us the r e l a t i o n s h i p of healing and the movement toward wholeness. An appropriate method for documenting t h i s process i s that of phenomenological  interviews with i n d i v i d u a l s who  transformation in t h e i r recovery from cancer.  have experienced a  By i n v i t i n g people to  t e l l the story of their transformation, and then looking for the commom themes of t h e i r experience, one i s able to capture a r i c h d e s c r i p t i o n of the larger human drama of s p i r i t u a l growth through i l l n e s s . i t possible to develop a map  This makes  of personal transformation.  The s i g n i f i c a n c e of t h i s study l i e s p a r t i c u l a r l y in the area of enhancing  c o u n s e l l i n g theories and p r a c t i c e .  been developing and implementing cancer patients.  For years c l i n i c i a n s have  psychosocial support programmes for  These programmes offer a wide v a r i e t y of options,  including c r i s i s intervention, i n d i v i d u a l c l i e n t - c e n t r e d c o u n s e l l i n g , peer support, coping s k i l l s t r a i n i n g , information-giving and group counselling.  A review of these programmes indicates varying  effectiveness (Cunningham, 1988).  Some of the problems noted are a weak  t h e o r e t i c a l base and a lack of rigorous programme evaluation. study an argument i s made for taking a step back: the survivors themselves  not only how  With t h i s  we need to learn from  to cope, but how  to grow.  Only  then can we be convinced that our theories of coping and personal growth t r u l y r e f l e c t human experience.  As we confirm, r e j e c t and  qualify  e x i s t i n g theory, we are able to design more e f f e c t i v e psychosocial interventions for cancer patients.  4  CHAPTER 2  L i t e r a t u r e Review  To address the issue of transformation  in the context of recovering  from a l i f e - t h r e a t e n i n g i l l n e s s , relevant l i t e r a t u r e must contain the following two assumptions.  F i r s t , i l l n e s s i s considered meaningful to a  person's l i f e , not just on a p h y s i c a l l e v e l , but on a l l l e v e l s , involving the t o t a l i t y of t h e i r being.  Second, every i n d i v i d u a l i s seen as  the innate capacity for health and wholeness.  These two  having  assumptions  help define the scope of this review. The structure of t h i s review i s based on the three dimensions of human experience:  body, mind and s p i r i t .  The d i s c i p l i n e s , and  the  theories i n 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  spiritual  medicine). These d i s c i p l i n e s are separated convenience of d i s c u s s i o n .  into d i s t i n c t categories only for  It w i l l become evident that the physical  d i s c i p l i n e s , for example, have a psychological emphasis, and that the psychological d i s c i p l i n e s flow into the realm of the s p i r i t u a l .  5  An attempt  i s made to include l i t e r a t u r e that joins the concepts of  transformation and recovery from cancer but, as t h i s i s a new area of research, the task has become one of searching out and integrating the d i s c i p l i n e s that shed l i g h t on the healing p o t e n t i a l contained in a c r i s i s such as c r i t i c a l  illness.  Accordingly, some research i s excluded from t h i s review; for instance, studies based on the t r a d i t i o n a l medical model.  Allopathic  medicine considers cancer to be the most capricious of a l l i l l n e s s e s , s t r i k i n g without warning, without meaning, and often without reason. Thus, the t r a d i t i o n a l medical model does not address the issue of the role of i l l n e s s in bringing about healing and transformation.  Physical D i s c i p l i n e s Psychobiology One of the most e x c i t i n g developments i n the understanding of healing from a western medical viewpoint i s the surge of interest in psychobiology.  It has been c l e a r l y established that stress and  emotional states influence s u s c e p t i b i l t y 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 c e l l u l a r and genetic l e v e l s , thereby explaining the healing process, the placebo response, and spontaneous For  and "miracle" cures.  an excellent review of the psychobiology of healing, the reader  is referred to the work of Rossi (1986).  6  Mind-bodv healing. There i s no lack of evidence of a concrete mind-body connection: i n fact, mind and body are now not considered separate at a l l , but an integrated communication system (Rossi, 1986). Chief of Brain Chemistry states:  Candace Pert, former  at the National Institue of Mental Health,  "I can no longer make a strong d i s t i n c t i o n between the brain  and the body" (cited in K l i n e , 1988, p.26). The main thrust of research i n psychobiology of  i s the understanding  mind-body i n t e r a c t i o n s , p a r t i c u l a r l y the e f f e c t of thoughts and  emotions upon immunity and health. This area of research was popularized by Norman Cousins, who documented h i s recovery from a l i f e - t h r e a t e n i n g i l l n e s s through laughter and a strong b e l i e f i n the regenerative powers of the mind and body (1979).  His own experience convinced him of the power of the b e l i e f  system i n a c t i v a t i n g the innate healing capacity of the body (1981). Cousins proposes that " b e l i e f becomes biology":  our hopes and fears and  expectations have a physical (biochemical) r e a l i t y , and a profound e f f e c t upon our a b i l i t y to deal with the challenges of d a i l y l i f e or disease (1989, p. 20). According to t h i s model, e s s e n t i a l to the recovery from i l l n e s s are:  the w i l l to l i v e , hope, optimism, and the  b e l i e f and determination to make the best of p o s s i b i l i e s . A basic assumption of mind-body reasearch i s that there i s a meaningful r e l a t i o n s h i p between body and mind. power i n a s s i s t i n g the body to heal.  The mind has a great  The body, through physical  dysfunction and i l l n e s s , has the a b i l i t y to show the mind where healing  7  needs to take p l a c e — f o r example, on an a t t i t u d i n a l l e v e l . Thus, mind-body research assumes a purposeful communication between mind and body.  In support of t h i s , 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" suggests reframing  (p. 173).  He  a symptom as a f r i e n d l y s i g n a l that a creative change  is needed in one's l i f e . Two  c l i n i c i a n s who  have given much p u b l i c i t y to the concept of  mind-body healing are the Simontons.  From t h e i r experience with  hundreds of cancer patients they have concluded that a person's a t t i t u d e s and expectations  are c r u c i a l to t h e i r well-being. They  outline four e s s e n t i a l steps to recovery Creighton,  (Simonton, Matthews-Simonton, &  1978):  (a) With the diagnosis of a l i f e - t h r e a t e n i n g i l l n e s s , a person gains a i  broad l i f e (b) One  perspective;  then makes the decision to a l t e r one's behaviour and be a  d i f f e r e n t person; (c) The  immunological system responds p o s i t i v e l y to feelings of hope and  the renewed desire to l i v e ;  and  (d) Recovered patients improve t h e i r self-concept and achieve a better state of psychological  health.  Central to t h i s process of healing i s the philosophy r e s p o n s i b i l i t y for maintaining  our health.  that we take  R e s p o n s i b i l i t y in t h i s  context means taking an a c t i v e r o l e in one's well-being.  Responsibility  8  does not infer causation:  a person  i s not responsble  for their disease;  they are responsible to i t . Thus, a person's choices in d i e t , exercise and l i f e s t y l e , and one's mental and emotional  o r i e n t a t i o n , a l l play  s i g n i f i c a n t r o l e s i n maintaining good health.  How  s i g n i f i c a n t are these  factors has not been c l i n i c a l l y established. The Simontons' work emphasizes the need for e l e v a t i n g the importance of the mind in healing and wellness.  C r i t i c i s m s of t h e i r  approach are l a r g e l y d i r e c t e d at t h e i r claims of prolonging l i f e through s e l f - h e l p techniques.  Their studies, however, are unique, e x c i t i n g and  deserve a t t e n t i o n .  Behavioural  Medicine  Behavioural medicine i s an i n t e r d i s c i p i n a r y approach to the prevention, treatment  and r e h a b i l i t a t i o n of physical disease.  integrates biomedical and social-behavioural approaches to  It  illness.  A c t i v a t i n g the w i l l to l i v e . Some researchers regard c r i t i c a l i l l n e s s as an experience which a c t i v a t e s 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 attitudes.  indicate that s u r v i v a l i s related to patients'  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 s u r v i v i n g a f t e r 10 years, compared to 50% of those whose reaction had been d e n i a l , 34% who  had reacted with s t o i c acceptance,  20% with a helpless/hopeless a t t i t u d e , with p = 0.024 (Greer &  and  9  S i l b e r f a r b , 1982; Greer, Morris, & Pettingale, 1979; Pettingale, Morris, Greer, & Haybittle, 1985).  Thus, the w i l l to l i v e f o r t i f i e d by a f e i s t y ,  determined stance i s assumed to be e s s e n t i a l to s u r v i v a l . It i s 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  fate with the survivors of concentration camps. b r u t a l , and prospects for s u r v i v a l are bleak.  Treatment  similar  of cancer i s  How prisoners coped with  a p a r a l l e l experience has been well-documented ( E i t i n g e r , 1964), and can teach us about l i v i n g with severe stress and l i f e - t h r e a t e n i n g disease. In Dimsdale's  (1974, 1980) study of 19 survivors of Nazi concentration  camps, he observed a v a r i e t y of coping behaviours. the most basic strategy of a l l was the w i l l to l i v e .  He concluded that Two other  extremely powerful motivating s t r a t e g i e s were the mobilization of hope and the b e l i e f i n s u r v i v a l f o r some purpose.  Many others have echoed  the c e n t r a l need for having a strong w i l l to l i v e i n order to survive cancer (Dosdall, 1986; F i o r e , 1979; Glassman, 1983; I s r a e l , 1978; S i e g e l , 1986; Simonton, 1984; Simonton, Matthews-Simonton, & Creighton, 1978), as well as surviving other serious i l l n e s s e s (Hutschnecker, 1966; J a f f e , 1980; Moos & Tsu, 1977; P e l l e t i e r , 1977). Claude Dosdall i s a l o c a l (Vancouver) who i s l i v i n g with a terminal diagnosis.  example of a cancer survivor He was diagnosed  i n 1977 with  an inoperable brain tumour and t o l d that he had a year to l i v e . his  From  own experience of s u r v i v a l , he has concluded that a patient's  expectation of recovery, a p o s i t i v e a t t i t u d e , determination, and b e l i e f in s u r v i v a l are c r u c i a l to recovery (1986).  A person must activate this  10  w i l l to l i v e by i n v e s t i g a t i n g and changing the b e l i e f s , thoughts, f e e l i n g s , a t t i t u d e s 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 i s a strong p o s i t i v e approach to t h e i r c r i s i s .  The w i l l to l i v e , the f a i t h ,  b e l i e f i n and hope for s u r v i v a l accompanied by the conviction that  life  i s worth l i v i n g — t h e s e are indispensible ingredients of s u r v i v a l and recovery.  Coping. One of the largest areas of cancer research i s that of coping. Hans Selye, father of the concept of s t r e s s , 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 (Tache, Selye, & Day, 1979).  i s about to die of cancer i s under s t r e s s " It i s i m p l i c i t i n t h i s statement that  l i f e - t h r e a t e n i n g i l l n e s s i s s t r e s s f u l , and that some people may  require  assistance i n coping with t h i s s t r e s s . For  d e t a i l e d accounts of s t r e s s and coping theory the reader i s  referred to the work of Lazarus and Folkman (1980, 1982, Menaghan (1983).  1984)  and  A review of t h i s l i t e r a t u r e i s beyond the scope of  t h i s paper. The most impressive a p p l i c a t i o n 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 r e s u l t s 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 v a r i a b l e s .  In a thorough i n v e s t i g a t i o n of how cancer  patients cope with t h e i r i l l n e s s , they have i d e n t i f i e d r e l i a b l e predictors of d i s t r e s s that can be measured at diagnosis, and which c o r r e l a t e with future v u l n e r a b i l i t y .  " V u l n e r a b i l i t y " r e f e r s to the  emotional and psychological d i s t r e s s that accompanies or develops i n response  to a problem.  They propose that a r e c i p r o c a l r e l a t i o n s h i p  e x i s t s between low emotional stress and e f f e c t i v e coping.  The following  table summarizes t h e i r findings, and suggests a coping p r o f i l e for cancer p a t i e n t s :  Low emotional stress and e f f e c t i v e coping.  High emotional stress and poor coping.  1. o p t i m i s t i c and hopeful  p e s s i m i s t i c , defeated, despondent  2. resourceful  rigid  3. a s s e r t i v e  yielding  4.  low ego strength  high ego strength  5. stable backgrounds  multi-problem  6. few marital problems before cancer  more marital problems before cancer  7.  more regrets about the past  few regrets about the past  backgrounds  8. coping by: (a) taking firm a c t i o n  taking a passive and inactive stance  (b) confronting r e a l i t y  denying, avoiding and suppressing  (c) r e d e f i n i n g problems; finding something favourable about i t  f a t a l i s t i c acceptance  (d) seeking constructive help; accepting support when offered  s o c i a l withdrawal, a l i e n a t i o n , minimal support from others  of the problem  12  (e) e f f e c t i v e problem r e s o l u t i o n  poor problem r e s o l u t i o n , impulsive a c t i n g out, excessive use of drugs and a l c o h o l , 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 t h e i r p a r t i c u l a r resources (attitudes and s k i l l s ) may  be f a i r l y constant over time, they conclude  that e f f e c t i v e coping e f f o r t s (strategies) can be taught, and that i n improving and d i v e r s i f y i n g t h e i r coping s t r a t e g i e s , cancer patients can lower t h e i r d i s t r e s s l e v e l and improve t h e i r problem r e s o l u t i o n . E f f e c t i v e coping r e s u l t s in improving the q u a l i t y of  life.  Opportunity for change. There i s age-old i n t e r e s t i n understanding the person with the i l l n e s s , r e f l e c t e d 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). possibility  Implicit in this concern i s the  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 e f f e c t i v e n e s s of psychological intervention.  13  (a) Cancer and chronic disease. There i s an impressive set of studies contrasting p e r s o n a l i t y factors of cancer patients with people who (Grossarth-Maticek  have other chronic diseases  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) i n an entire town (population of 14,000); these personality factors were c o r r e l a t e d with the incidence of disease recorded ten years l a t e r .  Results indicate a consistent p e r s o n a l i t y  pattern c o r r e l a t i n g cancer with chronic hopelessness  and  depression  (at ,0.59), and r a t i o n a l , anti-emotional a t t i t u d e s (0.51). high r e l i a b i l i t y c o e f f i c i e n t s for a prospective study.  These are Grossarth-Maticek  claims a 93% accuracy i n p r e d i c t i n g the incidence of cancer  as  distinguished from other i n t e r n a l diseases, s o l e l y on a b l i n d a n a l y s i s 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 s o l e l y on psychological v a r i a b l e s could be predicted with 72% accuracy suppression of anger was  (p < 0.001, Greer, 1979).  found to be c h a r a c t e r i s t i c of the breast cancer  group, but not of the benign breast disease group, who matched c o n t r o l s .  Extreme  acted as c l o s e l y  14  Another study matched women having c e r v i c a l cancer to those having c e r v i c a l neoplasia.  In the cancer group a s i g n i f i c a n t l y low l e v e l of  cooperative coping, and s i g n i f i c a n t l y high l e v e l s 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 s u r v i v o r s . Other researchers have suggested that cancer patients who t h e i r medically predicted l i f e expectancies demonstrate psychological functioning.  outlive  unique  A d i s t i n c t p r o f i l e of emotional functioning  has emerged, although the picture i s not always uniform i n d e t a i l . A study of metastatic breast cancer patients indicated that long-term survivors appeared d i s t r e s s e d , communicated t h e i r d i s t r e s s , and were more capable of e x t e r n a l i z i n g c o n f l i c t s and negative feelings (Derogatis, Abeloff, & Melisaratos, 1979).  In contrast, short-term  survivors exhibited a higher p o s i t i v e mood s t a t e .  Another recent study  of breast cancer patients supported the f i n d i n g that longer s u r v i v a l  was  associated with open, mutual communication with s i g n i f i c a n t others, strong emotional t i e s and a s o l i d 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 l i v i n g two years or more a f t e r being  15  diagnosed as incurable) were compared with short-term who  died within 13 months).  standard  psychodiagnostics  survivors  (those  In the long-terra survivors, a battery of revealed: a w i l l to l i v e coupled with a sense  of r e s p o n s i b i l i t y for t h e i r own  healing and the b e l i e f that i t can occur;  a r e f u s a l to give up or decompensate in the face of s t r e s s ; a high degree of ego strength, s e l f - s u f f i c i e n c y , f l e x i b i l i t y and nonconformity; and increased meaning i n l i f e ;  (Achterberg,  Matthews-Simonton, & Simonton,  1977). Another study of terminal cancer patients indicated that long-term survivors had  intimate r e l a t i o n s with family and  f r i e n d s , asked for and  received medical and emotional support, expressed anger and resentment in a way  that did not a l i e n a t e others, and accepted the seriousness  t h e i r i l l n e s s without b e l i e v i n g that death was Worden, 1975).  Shorter s u r v i v a l was  deprivation, a l i e n a t i o n , depression,  of  i n e v i t a b l e (Weisman &  associated with  longstanding  destructive r e l a t i o n s h i p s , and  an  a t t i t u d e of pessimistic f a t a l i s m and despondency. These r e s u l t s of a l l these studies support e a r l y c l i n i c a l observations  of the t y p i c a l cancer patient as passive, unexpressive and  o b l i g i n g , 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 clear and  is a  f a i r l y consistent p r o f i l e of the t y p i c a l cancer patient.  16  Cancer patients are p s y c h o l o g i c a l l y d i f f e r e n t from people with i other serious i l l n e s s e s ; they are also d i f f e r e n t from people who benign tumours; furthermore, the people who the same cancer are d i f f e r e n t as w e l l .  develop  l i v e longer than others with  Research hypothesizes a "Type C"  personality, which can be described as a person having a tendency  toward  emotional i n h i b i t i o n or repression, p a s s i v i t y , helplessness, hopelessness, depression and low self-esteem.  Yet cancer patients  who  fare better than expected are s i g n i f i c a n t l y more hopeful, o p t i m i s t i c and emotionally expressive than those who do poorly; have a strong desire to l i v e ; and take r e s p o n s i b i l i t y for t h e i r well-being. People can and do change, e s p e c i a l l y in the face of c r i s i s . can be taught better s k i l l s of coping and adaptation. opportunity for change.  People  I l l n e s s can be an  This i s the s i g n i f i c a n c e of a l l these studies  which attempt to delineate a psychological and coping p r o f i l e 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 d i s t r e s s and improve problem r e s o l u t i o n in cancer patients (Forester, Kornfeld, & F l e i s s , 1985; Spiegel, Bloom, & Yalom, 1981; Worden & Weisman, 1984;  Yalom & Yousssef, 1984).  Coping s k i l l s  training  seems to be more e f f e c t i v e than nondirective group sessions (Telch & Telch, 1985,  1986).  Other studies suggest that the course of disease can be altered and l i f e s p a n prolonged through c a r e f u l l y 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 t h e i r  expectations and b e l i e f s , taught r e l a x a t i o n techniques, meditation, mental  imagery, p o s i t i v e  suggestion, problem-solving and communication  skills. The question of whether psychological approaches l i f e has not yet been resolved.  can indeed extend  Studies addressing this issue have  encountered much opposition from medical c i r c l e s , and can r i g h t l y be c r i t i c i z e d f o r methodological weaknesses and lack of proper c o n t r o l s . Yet the claim that health and healing can be promoted by one's own efforts  i s tenable i n l i g h t of c l i n i c a l and psychobiological evidence.  Psychological  Disciplines  Existential-phenomenology E x i s t e n t i a l psychotherapy focuses on the ultimate concerns of human existence, which Yalom (1980) describes as death, freedom, i s o l a t i o n and meaninglessness.  E x i s t e n t i a l therapy helps people confront t h e i r  anxiety about death, take r e s p o n s i b i l i t y  for t h e i r l i v e s , and move ahead  into f u l l and vibrant engagement i n l i f e .  Search for meaning. Viktor Frankl speaks eloquently of the central being to discover the meaning of one's l i f e  (1984).  need of every human Without  discovering  t h i s meaning, l i f e i s empty and without d i r e c t i o n and purpose, and  18  people cannot commit themselves to any basic involvement with the world. Most people f i n d meaning i n something they do or they create, or i n loving and being loved by another.  People such as those with a  l i f e - t h r e a t e n i n g i l l n e s s , have yet another option.  They can f i n d  meaning i n t h e i r s u f f e r i n g , whether i t l i e s i n c u l t i v a t i n g an a t t i t u d e of courage and acceptance, or becoming an i n s p i r a t i o n f o r 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 s u f f e r i n g , people can discover a new meaning i n l i f e .  Her basic assumption  i s that i l l n e s s takes  people on a search for the meaning of t h e i r l i v e s , and helps them discover and express that meaning.  Campbell suggests that pain and  s u f f e r i n g are i n t e g r a l to psychological growth, when the former state of a person's consciousness must d i e .  She concludes that, "there i s much  more to i l l n e s s than meaningless s u f f e r i n g , and much more to health than e f f i c i e n t functioning" (p. 230). I l l n e s s leads toward  individuation and  wholeness by showing a person the need for healing, and how the healing can happen.  For mastectomy patients t h i s healing involves:  (a) discovering a new sense of purpose i n l i f e ; (b) expressing  t h i s purpose by c l a 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  " i n the now";  (c) acquiring courage, gaining a sense of inner authority, taking r e s p o n s i b i l i t y 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 i n d i v i d u a l i t y and uniqueness; (e) having a sense of community with other cancer patients and with a l l humanity;  and  (f) experiencing the renewal and i n 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 i n 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 p r a c t i s i n g  pyschotherapy with people who have cancer, he reports that 50% of h i s terminal patients are s t i l l a l i v e (1989).  According to LeShan, e f f e c t i v e  psychotherapy for people with a l i f e - t h r e a t e n i n g disease must have an e x i s t e n t i a l basis. LeShan makes four basic assumptions about healing:  (a) each person has s e l f - h e a l i n g  abilities,  (b) a person must p a r t i c i p a t e in t h e i r own  healing,  (c) a healing programme must be i n d i v i d u a l i z e d , and (d) healing must occur on a l l l e v e l s — p h y s i c a l , psychological and spiritual. He also f e e l s that the f i g h t for l i f e in surviving cancer i s a search for s e l f and a search for meaning.  His approach in psychotherapy  20  is helping cancer patients discover their own  unique ways of  being,  r e l a t i n g and c r e a t i n g i n the world. It  i s important to note that no other studies have r e p l i c a t e d  kind of success that Leshan claims psychological intervention.  the  i n combatting cancer through  Yet even modest gains  in l i f e expectancy  and the unquestionable improvement i n the q u a l i t y of l i f e would have a profound e f f e c t on cancer treatment. Martus (1985) conducted a phenomenological study of the healing process in 16 i n d i v i d u a l s 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  s i g n i f i c a n c e of b e l i e f systems i n 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 i l l n e s s shatters a person's b e l i e f s , that new  b e l i e f s need to be discovered  and affirmed.  and  Martus concluded  that b e l i e v i n g in one's healing f a c i l i t a t e s the healing  process.  Believing i s both the cause of change i n 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 l e v e l , but more often that not,  involve changes on the emotional,  s p i r i t u a l and behavioral l e v e l s " (p. 92).  Thus, concomitant with  healing i s an increased awareness of s e l f and  harmony within  oneself  (body, mind and s p i r i t ) , as well as increased harmony i n r e l a t i o n to others and  the world.  His findings support other studies that suggest  that the healing process begins with an orientaion toward b e l i e v i n g , and as healing progresses,  there  is an ongoing exploration and dialogue  with  21  one's b e l i e f s . P e n n i n g t o n ' s (1982) s t u d y e l a b o r a t e d values  i n the h e a l i n g p r o c e s s .  of s i x p e o p l e who Two  had  She  s u r v i v e d two  conducted a phenomenological study y e a r s beyond a t e r m i n a l  of the s u b j e c t s were Hans S e l y e and  explored  upon the r o l e of b e l i e f s and  Gregory Bateson.  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 .  diagnosis. The  study  Pennington  c o n c l u d e d t h a t p e o p l e a r e a b l e t o e x e r t a power over t h e i r h e a l i n g , in 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  suggests that "there are p s y c h o l o g i c a l  q u a l i t y of l i v i n g , and  psychological  She  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 t h e m i n d - b o d y - s p i r i t increased  for s e l f .  and  r e s u l t i n g i n longer  apparent recovery"  (p. 214).  i n f l u e n c e s a r e woven i n t o a t h e o r y of " p e r s o n a l  life,  These 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  self;  (b) meaning of l i f e and (c)  death;  choice;  (d) w i l l t o l i v e  (transformed  into life-affirming action);  (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 t o m a n i f e s t 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  lifestyles.  Mastery. I n Cunningham's (1988) t h o r o u g h r e v i e w of p s y c h o s o c i a l for  intervention  c a n c e r p a t i e n t s , he n o t e s the e v o l u t i o n of programmes t h r o u g h  22  various stages, notably:  neglect up to the s i x t i e s ; systematic  support  in the seventies; coping s k i l l s t r a i n i n g i n the e i g h t i e s ; and the p o s s i b i l i t y in the future of t r a i n i n g i n s k i l l s of mastery.  Cunningham  makes the plea that we can do f a r more than teach cancer patients to cope e f f e c t i v e l y with t h e i r i l l n e s s . a c t i v e l y against t h e i r disease.  We need to teach people to f i g h t  This would include teaching not only  basic stress management, but helping i n s t i l l i n people the c o n v i c t i o n that they are the masters of t h e i r own f a t e .  This requires people to  develop a sense of r e s p o n s i b i l i t y for t h e i r health and healing; to change thought patterns, a t t i t u d e s and actions that are counterproductive to healing and happiness; to explore the meaning of one's i l l n e s s ; and to define a clear purpose i n l i f e aided by l i f e review, meditation and discussion. Siebert (1980, 1983, 1985) supports t h i s concept of mastery with his  studies in synergy.  He describes the need for synergy as a basic  motivational force that takes one step beyond s e l f - a c t u a l i z a t i o n . Central to the s y n e r g i s t i c personality i s the integration of paradoxical personality t r a i t s .  A s y n e r g i s t i c person can be described as a unity of  opposites: tough and s e n s i t i v e , cooperative and r e b e l l i o u s , s e l f - c e n t r e d and u n s e l f i s h , c h i l d l i k e yet mature. Siebert's development of a synergy model dates back to h i s i n t e r e s t of 37 years i n the study of s u r v i v o r s . personality as someone who has:  (a) survived a major c r i s i s ;  He defines the survivor  23  (b) surmounted that c r i s i s through personal e f f o r t ; (c) emerged from the experience with previously unknown strengths and a b i l i t i e s ; and (d) found, r e t r o s p e c t i v e l y , value i n the experience.  This operational d e f i n i t i o n of a survivor gives meaning to the issue of s u r v i v o r s h i p .  There has been a corresponding s h i f t i n the  medical model to regard the cancer survivor as more than someone l i v i n g  i with a diagnosis of cancer.  The National C o a l i t i o n for Cancer  Survivorship suggests that "survivors share a common, transforming experience that has impacted t h e i r l i v e s with new challenges and enhanced p o t e n t i a l s " ( S t a f f , 1987,  p. 7).  In a t t r i b u t i n g c e r t a i n states of mind and purposeful behaviour to survivorship, Siebert i s suggesting that there i s something that can be learned from c r i s e s . Siebert's observation of survivors revealed that they are people with s y n e r g i s t i c p e r s o n a l i t i e s .  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 s u r v i v a l i s not a random event.  There i s evidence  of a survivor p r o f i l e , and people can learn how be to s u r v i v o r s .  These  conclusions have s i g n i f i c a n c e for people with l i f e - t h r e a t e n i n g disease. Studies l i k e those of Cunningham and Siebert make important contributions to the f i e l d of personology. phenomenological  Personology i s the  study of people, which focuses in the detection of  24  common patterns of functioning (Mages & Mendelsohn, 1979). and  Cunningham  Siebert suggest a l e v e l 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 i s to be f u l l y human.  Jungian Psychology The  core of Jungian psychology i s the healing of the s p l i t between  consciousness and  unconsciousness, by c r e a t i n g a dialogue  through the  use of dreams, f a n t a s i e s , body language, a r t , myth and r i t u a l . bringing into awareness what i s hidden and  By  undiscovered, a person can  make contact with a c r e a t i v e inner source which then guides them on the path to become a unique and  A c t i v a t i n g the inner Some researchers  individuated person.  healer.  contend that healing occurs when the  healing capacity i s a c t i v a t e d .  This concept i s not a new  h i s t o r i c a l b e l i e f dating back to the ancient Greeks. medicatrix  naturae"  i s the power of recovery  Guggenbuhl-Craig expresses i t t h i s way:  "The  innate one,  but a  "Vis  inherent  i n an organism.  sick man  seeks an external  healer, but at the same time the intra-psychic healer i s a c t i v a t e d . often refer to t h i s intrapsychic healer factor . 1  in the i l l as the  We  'healing  Neither wounds nor diseases can heal without the curative  a c t i o n of the inner healer" (1971, p.  90).  What exactly i s meant by the inner healer  i s not made e x p l i c i t .  i t a creative image or symbol that a r i s e s in the mind, and  that i s  Is  25  activated by b e l i e f and hope?  Proponents  of t h i s persuasion do make i t  c l e a r , however, that i n d i v i d u a l s must develop a very personal r e l a t i o n s h i p with their i l l n e s s :  they must have the conviction that  t h e i r own a b i l i t i e s to heal are a great a l l y i n the struggle.  It i s  assumed that people need to take r e s p o n s i b i l i t y for a s s i s t i n g the healing process i n order for healing to occur.  Affirming one's destiny. The notion that healing comes about through a u n i t i v e , higher order than psyche or soma i s a notion germane to Jungian psychologists (Meier, 1963).  Thus, the task i n healing i s to contact and activate the numinous  (divine or s p i r i t u a l ) powers within ourselves (Hyman, 1977).  By  a c t i v a t i n g these s p i r i t u a l , healing q u a l i t i e s a person i s guided fulfilling  toward  t h e i r destiny.  C a r l Jung recognized the p o t e n t i a l of i l l n e s s a f t e r his own health struggles: " I t was only a f t e r the i l l n e s s that I understood  how  important i t i s to a f f i r m 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 " s i g n i f i e s something wrong in one's r e l a t i o n to l i f e , and so cancer i s both a warning and an opportunity to seek out the paths of unlived l i f e "  (Lockhart, 1977).  considers cancer to be a metaphor for l i f e unlived, and something oneself that i s denied, undernourished and not permitted to grow.  of In  responding to i l l n e s s by beginning an inner growth process, a person  He  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 i l l n e s s i s a semantic question.  What i s  important i s that i l l n e s s i s perceived as a r i c h source of renewal and a confirmation of one's path.  Becoming whole. [ Other Jungians describe i l l n e s s as holding the p o t e n t i a l for becoming whole. this' theme.  John Sanford (1977) provides a seminal discussion on  His work draws from Jungian and C h r i s t i a n influences.  Sanford f i r s t  looks to the o r i g i n s of the word "health" to find  that i t means wholeness.  To be healthy i s to be whole; a whole person  is a complete and unique person. called individuation.  This movement toward wholeness i s  I t i s a l i f e - l o n g and never-ending process, by  which people seek to r e a l i z e t h e i r p o t e n t i a l . " A l l : creatures e x i s t for a purpose. is...  Sanford suggests that,  Even an ant knows what that  purpose  Only human beings have come to a point where they no longer know  why they e x i s t " (p. 17).  Yet that purpose i s 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 . dangerous,  This process of becoming whole, however, i s a dark, p a i n f u l passage that most of us would prefer to avoid.  seems, then, that s u f f e r i n g i s inherent i n becoming whole.  It  I t i s as i f  our l i v e s must b r u t a l l y knock up against something, such as a life-and-death c r i s i s , i n order for us to take the steps toward individuation and wholeness.  According to Sanford's t h e s i s , the task of  27  individuation for people with cancer takes them on the s p i r i t u a l of  journey  self-healing. Marion Woodman, i n her (1985) discourse on transformation, r e f l e c t s  that, " i t takes a holocaust, outer or inner, to help us to r e a l i z e what is r e a l l y e s s e n t i a l i n l i f e " a f r a i d of change.  (p. 31).  She questions why people are so  "Why do we lose our childhood f a i t h i n growing?  Why  do we c l i n g to old attachments instead of submitting ourselves to new p o 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 c u l t u r a l maps and r i t e s of  passage to guide people along the way. weary, and bored. chrysalis".  As a r e s u l t , people  feel  trapped,  This is a state described by Woodman as "perpetual  The c h r y s a l i s i s e s s e n t i a l i f we are to find ourselves, and  find ourselves we must.  Yet we need to emerge from the c h r y s a l i s ,  as the c a t e r p i l l a r does to become a b u t t e r f l y . psychological transformation.  just  This i s the process of  I t is a search for one's essence.  In the  struggle to become conscious, Woodman o f f e r s the image of the "pregnant v i r g i n " — o n e who i s forever pregnant and open to p o s s i b i l i t i e s and new life. As a summary of t h i s discussion of wholeness, as i t r e f e r s to transformation and healing, Carlson and Shield (1989) state that, "Healing i s 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 i s  a process of personal transformation, a process of becoming one with ourselves" (p. 187).  The implication for cancer patients i s that their  28  struggle for s u r v i v a l can be a holocaust i healing and wholeness.  which p r e c i p i t a t e s growth,  Neo-Junqian Psychology Self-understanding. One  of the e x c i t i n g developments i n Jungian psychology i s process-  oriented psychology (POP)  or Dreambody work, founded by  (1982, 1985a, 1985b, 1987).  Arnold  Mindell  The primary focus of process psychology i s  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 i n d i v i d u a l i s t r y i n g to express. considered  Body symptoms are  analogous to dreams—they have a reason for e x i s t i n g , an  inner meaning, and a mysterious way  of communicating.  In l e t t i n g  the  symptoms of the body speak for themselves, a r i c h p o t e n t i a l for s e l f understanding i s a v a i l a b l e . Instead  of considering disease as pathological and d e s t r u c t i v e ,  Mindell suggests that a l l body states be regarded as meaningful and purposive. request  The essence of i l l n e s s , according  for a t t e n t i o n and change.  to Mindell, l i e s i n i t s  Thus, "the s p i r i t of the  appears as the s p i r i t and meaning behind l i f e "  (1982, p.90).  disease Mindell  makes an i n t e r e s t i n g hypothesis about chronic i l l n e s s , borne out by his c l i n i c a l experience i n working with the i l l , dying.  "A chronic disease  the s e r i o u s l y i l l and  the  is often a l i f e l o n g problem, a part of  someone's i n d i v i d u a t i o n process.  I don't believe that a person a c t u a l l y  29  creates disease, but that his soul i s expressing an important him through the disease" (1985b, p. 13). other Jungian  message to  He voices the theme, echoed by  t h e r a p i s t s , that pain and s u f f e r i n g are f u n c t i o n a l :  "People have a huge need to f e e l t h e i r pain.  Very often pain i s the  beginning of a great deal of awareness" (1985b, p. 37). another process-oriented t h e r a p i s t , agrees.  Goodbread,  He suggests that i t i s  those things which most d i s t u r b us and create s u f f e r i n g which also have the greatest p o t e n t i a l for enriching and transforming our l i v e s Furthermore, Mindell adds that body problems may disturbances and even c o l l e c t i v e problems of the world 1987).  He considers cancer  (1987).  r e f l e c t family (1985a, 1985b,  to be not just a personal problem, but a  world process. The task of cancer patients, then, i s to bring to the world the learning which has taken place during their healing and transformation  Transpersonal  process.  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 r e a l i t y . Transformation who  i s a c e n t r a l concern of transpersonal psychologists,  often l i k e n the process to a personal  journey.  30  Hero's journey. The great mythologist, Joseph Campbell,  has popularized the journey  of transformation in his d e s c r i p t i o n of the hero's myth (1968).  The  hero i s a symbol of the s p i r i t u a l force that c a r r i e s our destiny. In his depiction of the hero's journey, Campbell presents a story of psychological s i g n i f i c a n c e .  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 . something i n his l i f e which must be faced. a deep sense of meaninglessness: meaning.  There i s  Perhaps the c a l l comes from  what had meaning before no longer has  The hero i s summoned by destiny to enter the darkness and the  unknown. The second stage, i n i t i a t i o n , describes t h i s 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 i s greater than oneself, and inexhaustible. the hero i s p u r i f i e d . unity of a l l things.  In winning the b a t t l e ,  He now has the v i s i o n of God.  He perceives the  This c a r r i e s him beyond the d u a l i t y of opposites.  In the t h i r d stage, return, the hero must reintegrate with society. This return i s indispensable for the c i r c u l a t i o n of s p 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 b a t t l e and being strengthened by i t may well provide meaning for the process of recovering from l i f e - t h r e a t e n i n g cancer.  S p i r i t u a l emergence. S t a n i s l a v Grof i s a p s y c h i a t r i s t 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-  r e b i r t h process that i s a transformational journey s i m i l a r to  Campbell's  journey of the hero.  shamanic  The death-rebirth process also resembles  i n i t i a t i o n , c u l t u r a l r i t e s of passage, and the stages of b i o l o g i c a l b i r t h (Grof & Grof, 1980; facilitates  Grof & Halifax, 1977).  the emergence of the s p i r i t .  This i s a journey that Four stages are  proposed:  (a) engulfment, (b) no e x i t , (c) death-rebirth struggle, and (d) death and  rebirth.  In the f i r s t stage, engulfment, a person experiences an overwhelming f e e l i n g of anxiety and the awareness of some v i t a l threat. Grof compares t h i s stage to the onset of b i o l o g i c a l d e l i v e r y , and the b i b l i c a l story of expulsion from the Garden of Eden. The second stage, no e x i t , i s the experience of the world as dark  32  and menacing, where l i f e lacks purpose, and s u f f e r i n g i s experienced as eternal and inescapable.  This resembles  f i r s t - s t a g e b i r t h , 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. struggle becomes meaningful, whereas e a r l i e r i t f e l t hopeless.  Here  This  i s a struggle for s u r v i v a l , and may be experienced as the struggle between good and e v i l , pleasure and pain, joy and s u f f e r i n g .  A person  learns to withstand the forces that threaten to crush and suffocate and drown.  An analogy i s made here with second-stage  b i r t h , and Purgatory  or the Last Judgement. Death and r e b i r t h mark the end of the journey, a stage comparable to third-stage b i r t h and the Resurrection.  A person experiences  complete a n n i h i l a t i o n on a l l l e v e l s : p h y s i c a l , emotional and mental. the ego d i e s , one i s s p i r i t u a l l y reborn. sacred.  As  The world i s experienced as  A person f e e l s bathed i n love, joy, i n e f f a b l e b l i s s , and  feels  at one with a l l things. Grof proposes that i l l n e s s can be given the l i f e - t r a n s f o r m i n g context of s p i r i t u a l r e b i r t h .  He makes the argument that we need to  provide c u l t u r a l maps of growth and change to help guide people of the modern age through chaotic and confusing times.  To t h i s end, he  redefines l i f e - t h r e a t e n i n g c r i s e s as " s p i r i t u a l emergencies",  and with  C h r i s t i n a Grof, has developed the S p i r i t u a l Emergence Network, an i n t e r n a t i o n a l organization providing support for i n d i v i d u a l s transformative c r i s e s (Grof & Grof, 1989).  undergoing  33  Rite of passage. In Grof's account of the transformative death-rebirth process, he makes reference to the c l a s s i c a l study of r i t e s of passage by Arnold van Gennep (1961). hero's journey.  This anthropological model has s i m i l a r i t i e s to the Three stages are outlined:  (a) separation, (b) t r a n s i t i o n , and (c) incorporation.  The r i t e of passage i s f i r s t marked by separation of the i n d i v i d u a l from her or h i s community. and fear of the unexpected.  The person experiences loneliness,  isolation  Yet with the reassurance that t h i s strange  new t e r r i t o r y has been crossed before by many others, the i n d i v i d u a l surrenders to the unknown. In the stage of t r a n s i t i o n a person s u f f e r s t o t a l a n n i h i l a t i o n , and learns through profound experience that one can emerge renewed and reborn. The i n d i v i d u a l i s integrated, a changed person, back into the community, in the f i n a l stage of incorporation. These three d e s c r i p t i o n s of the j o u r n e y — t h e hero's journey, the death-rebirth process, and the r i t e of passage—have diverse o r i g i n s in mythology, psychiatry and anthropology, and yet are remarkably in d e t a i l .  They indicate several things:  similar  profound change involves a  journey; the journey i s p e r i l o u s , and requires that fears be courageously faced; old ways of being must d i e ; and as people are reborn  34  into new l i f e ,  they make a p o s i t i v e contribution to the world.  Spiritual Disciplines Amerindian  Philosophy  Our native American heritage i s one example of a s p i r i t u a l d i s c i p l i n e which addresses the issue of transformation. philosophy  i s deeply rooted i n nature and a reverance for a l l l i f e .  Earth i s considered for  Amerindian The  to be our Mother and our most intimate r e l a t i o n ,  without the earth, we cannot l i v e .  The focus of native  teachings  is how to l i v e i n harmony with the Earth and a l l things of the Earth.  Shamanistic i n i t i a t i o n . The  l i t e r a t u r e of the native peoples of North America i s r i c h 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 i n our North American heritage.  Whether  these s t o r i e s are an accurate anthropological account or f i c t i o n i s not important:  the relevant point here i s 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 r i c h psychological a n a l y s i s of the Castaneda adventures (1981). s t o r i e s describe an i n i t i a t i o n into shamanism.  The don Juan  These s t o r i e s use the  analogy of a journey, and have an uncommon s i m i l a r i t y to the transpersonal  journeys  outlined e a r l i e r .  T r a d i t i o n a l l y , what c a l l s a person to the path of knowledge i s an  35  unusual sickness that brings on potent dreams and v i s i o n s .  If the  i n d i v i d u a l chooses to answer the c a l l , t h i s 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  s p e c i a l i z e i n the  influence of the mind on the body, and have the a b i l i t y of " t r a v e l l i n g between the worlds" for information ( E l k i n , 1977, pp. 77-78).  The world  of the unconscious, the non-rational and the unknown hold information for  healing. The t h e s i s of Williams analysis i s that the pursuit of 1  self-knowledge connects a person to t h e i r source of healing.  He  presents three phases of t h i s 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, l i v e s by mechanical routines, and lacks a sense of purpose. I l l n e s s , intense s u f f e r i n g , and the v i s i o n 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 i n d i v i d u a l , l i k e the hunter...comes to know his or her unique path or myth" (p.33).  Williams adds that i t i s e s s e n t i a l to honour what we  learn about our path by l i v i n g i t . r e l a t i o n to cancer patients.  This i s an i n t e r e s t i n g point i n  If there is a r e l a t i o n s h i p (as many  suggest) between health and l i v i n g one's path, i s there also a r e c i p r o c a l r e l a t i o n s h i p between i l l 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 d e l i b e r a t e l y  turns to the darkness and the unknown of the inner and outer worlds for d i r e c t i o n and guidance.  A warrior's a t t i t u d e i s c r u c i a l : he must  develop courage and the willingness to face h i s fears.  "The  warrior's  a t t i t u d e i s that the worst has already happened, he considers that he is already dead and thus has nothing to l o s e . . . .  The warrior  may  d e l i b e r a t e l y welcome the worst in order to know i t s secret. may  even turn out to be our best chance" (p. 65).  warrior i s the way our own  The way  The worst of the  to i n d i v i d u a t i o n , where we learn to "trust and  unique experience  follow  regardless of whether or not i t matches the  general trend" (p. 57). F i n a l l y , one turns to the way d i r e c t i o n of the unconscious,  of the seer.  d i r e c t s his l i f e by what he sees,  understands things as they r e a l l y are. himself to a larger r e a l i t y .  A seer l i v e s by the  In t h i s way  the seer  and  reconnects  The seer must also assume r e s p o n s i b i l i t y  for his inner knowledge, and find the means of sharing what he knows  37  with others in becoming a teacher, healer or shaman. The s i g n i f i c a n c e of the shaman's journey i s 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 i n d i v i d u a l ' s connection with the e n t i r e universe.  Buddhism aims to develop a l e v e l of awareness  c a l l e d "unity consciousness" (Wilber, 1979).  This i s not the exclusive  domain of Buddhism, but i s the goal of most world r e l i g i o n s .  Thus,  C h r i s t i a n i t y , Judaism, Islam, Hinduism, Taosim and Sufism could a l l be explored for the ways i n which they address the issue of transformation.  Archetypal journey. The story of the l i f e of the Buddha, l i k e that of C h r i s t , symbolizes the universal p r i n c i p l e s that give meaning and guidance to human l i f e .  Goldstein and K o r n f i e l d , 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, s i m i l a r 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 i n 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 i s the c a l l to awaken. whispers that l i f e can be d i f f e r e n t from the way Buddha, i t was  the profound awareness of how  self-inquiry.  we l i v e i t . For the  our l i v e s are limited and  conditioned by s u f f e r i n g , i l l n e s s and d e a t h — t h a t of  Something inside us  thrust him on the path  The Buddha was a prince i n his e a r l y years and had to  leave the protective l i f e of the palace in order to r e a l i z e himself. The second stage of the journey i s the great renunciation, when a person sees new living.  p o s s i b i l i t i e s and begins to change habitual ways of  The s t o r y of the Buddha decribes how  he became a monk and  undertook d i f f e r e n t p r a c t i c e s through which he might a t t a i n true freedom. The t h i r d stage i s the great struggle.  People on the path of  transformation must confront t h e i r fears and struggle with the forces of e v i l or delusion.  The account of the Buddha's b a t t l e with these worldly  forces is very s i m i l a r to the s t o r y of the temptations The completion  of C h r i s t .  of the journey i s the great awakening.  A person  recognizes the causes of s u f f e r i n g , sees that there i s an end to t h i s unhappiness, and s t r i v e s to l i v e a l i f e that w i l l bring true contentment and peace of mind. "to  According to the Buddha, to be awake is to be aware,  develop freedom within oneself, compassion for the s u f f e r i n g of the  world, and an a c t i v e sense of service for the welfare of others"  (p.84).  Thus, not only can we look to the Buddha to c u l t i v a t e the q u a l i t i e s of loving-kindness, generosity, wisdom, t r a n q u i l l i t y and equanimity,  but  39  our l i v e s must also be directed toward b e n e f i t i n g and i n s p i r i n g others.  Manifesting the d i v i n e . K a r l f r i e d von Durckheim provides another Buddhist model of the journey of transformation  (1980).  His thesis i s 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 l i v e t h i s way i s to manifest the divine i n the world.  Like  many others, Durckheim believes that only s u f f e r i n g can motivate us to take t h i s path of transformation.  "Only that pain which a r i s e s from  the depths of himself can f i n a l l y compell a man to look inwards and bring him to the r e a l i z a t i o n that he has l o s t touch with h i s own e s s e n t i a l inner being" (p. 15). Five steps of transformation are proposed by Durckheim: (a) c r i t i c a l awareness, (b) l e t t i n g go, (c) experience  of oneness,  (d) r e b i r t h , and (e) d a i l y p r a c t i c e .  In the f i r s t step, c r i t i c a l awareness, we recognize what i t i s that stands and  in the way of true s e l f - r e a l i z a t i o n .  i n what circumstances  We must understand how  we f a i l to express our e s s e n t i a l being.  According to Durckheim, to be r i g h t l y centred in our e s s e n t i a l being i s to  be guided and to be given strength and purpose from our centre, so  that we can learn to l i v e at peace with a l l the ups and downs of l i f e .  40  The second step i s to l e t go of the a t t i t u d e s 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 d e s i r e " (p. 71). Durckheim describes the experience of oneness as "Union with the Ground of Being".  In t h i s stage we experience the f e e l i n g 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 r e b i r t h or "new-becoming" a person experiences the reversal of the old l i f e , a melting of the world-ego, and a new b i r t h .  Even at this  point i n the journey, an i n d i v i d u a l must have commitment and tenacious w i l l to stay on the path. The f i f t h stage i s described as the d a i l y practices which confirm the a t t i t u d e of l e t t i n g go, and give us the experience of oneness and renewal.  This i s s i m i l a r to the f i n a l stage of the other journeys  described, where a person confirms t h e i r transformative experience by sharing t h e i r knowledge with the world.  Summary of the transformative journey. A d e s c r i p t i o n of the transformative journey as described i n the s i x models reviewed e a r l i e r i s summarized in three stages, as follows: The beginning of the transformative journey i s marked by a c a l l to awaken and to change.  It i s a c a l l that a r i s e s from our pain, our  s u f f e r i n g , the lack of purpose and s p i r i t u a l guidance the deeply f e l t need to l i v e d i f f e r e n t l y .  in our l i v e s , and  A person c l e a r l y recognizes  41  what must be c h a n g e d , and t a k e s 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 m y t h ,  meaning or e s s e n c e .  As one b e g i n s the s e a r c h , the t h r e a t of d e a t h or  a n n i h i l a t i o n i s experienced very d r a m a t i c a l l y . The m i d d l e of t h e 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 go of o l d ways.  Initially,  the f e a r of l e t t i n g go c r e a t e s an  o v e r w h e l m i n g 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 . develops courage,  in letting  B u t , as one  t h e w i l l i n g n e s s t o f a c e f e a r s , and t h e b e l i e f  d e a t h i s an a l l y , one i s a b l e t o commit o n e s e l f t o the p a t h .  that  Many  o b s t a c l e s and t r i a l s a r e e n c o u n t e r e d and overcome, and a p e r s o n i s r e q u i r e d t o shed the ways t h a t i n h i b i t  full  human b e i n g .  The p r o c e s s of r e b i r t h i s d e s c r i b e d i n t h e end of t h e s t o r y .  A  p e r s o n 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 is a state  of w h o l e n e s s , and embodies t h e 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 t h r o u g h 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 t h e a t t i t u d e s of c o m p a s s i o n , g e n e r o s i t y , wisdom and peacefulness.  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 r e g e n e r a t e s  as a p e r s o n 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  itself others  and c o n t r i b u t i n g t o the w e l f a r e of a l l .  S p i r i t u a l Medicine There i s a new wave of m e d i c i n e t h a t a t t e m p t s t o u n d e r s t a n d 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  force.  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 r e a t m e n t of i l l n e s s .  T h i s a p p r o a c h 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 i s i m p l i c i t i n l i f e threatening disease.  The obvious transformation would be p h y s i c a l  death, yet there i s another transformation.  p o s s i b i l i t y — t h a t of psychological  True psychological transformation demands psychological  death and r a d i c a l personal change.  Joy proposes:  If that transformation i s chosen and i f i t i s to be e f f e c t i v e , the change i n the patient's a t t i t u d e s and l i f e patterning must be as complete as would transpire through death. do i t ; there i s no room for compromise. required.  Halfway measures won't  Sweeping changes are  Marshaling the courage and c l a r i t y to make the necessary  changes i s the r e a l challenge, (p. 210) In order to change, a person must f i r s t conceive that there i s more to  experience  potential.  i n any given moment, and that each moment holds l i m i t l e s s  The task i s then to r e a l i z e t h i s p o s s i b i l i t y .  This process  i s described by Joy as "discovering the intention of one's s o u l " . The c e n t r a l tenet of h i s research i s that transformation brings healing, and that both of these are e s s e n t i a l s p i r i t u a l tasks. Stephen Levine, a consultant/guide addresses  for the dying, eloquently  the a t t i t u d e of someone going through a transformational  healing process  (1987).  He suggests  that i t i s p r i m a r i l y our a t t i t u d e s  and b e l i e f s about how we should l i v e (and how we should die) that  43  contribute to our pain and s u f f e r i n g . He suggests that we change our a t t i t u d e toward i l l n e s s to perceive i t as a teaching rather than a curse.  By learning to accept and allow  our pain and s u f f e r i n g , we begin the process of healing.  Developing  t h i s a t t i t u d e of openness and acceptance creates the space that i s c r u c i a l for healing to occur.  According to Levine, "healing i s the  growth that each person seeks" (p. 4).  Healing c a l l s us to grow,  p a r t i c i p a t e deeply i n l i f e , and open our hearts to the s u f f e r i n g that i s inescapable.  This i s the process of awakening that transforms our  Levine makes the plea that we begin t h i s process now.  lives.  I t i s our  task as humans to awaken and become whole. Don't wait to l i v e u n t i l you have been t o l d that death i s only s i x months away.  This i s not work to be done at some l a t e r date when a  f r i g h t e n i n g diagnosis or prognosis i s received. healing a v a i l a b l e to us t h i s very instant.  This i s the  Entering our heart i s a  process of l e t t i n g go of our s u f f e r i n g , (pp. 246-247) This recommendation i s intended for a l l of us, and reinforces the need expressed i n t h i s study to learn from those who are transformed by a serious  illness.  According to Levine, i n healing, we learn to c u l t i v a t e the attitudes of s e l f - l o v e and s e l f - f o r g i v e n e s s , and learn to l e t go of our anger, g r i e f and f e e l i n g s 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 i s not so much a matter of removing  i l l n e s s as i t i s the process of healing the mind and s p i r i t , so that we can l i v e f u l l y and die in peace.  This p o s i t i o n warns us not to make  f a l s e assumptions about those who  l i v e and those who  less of a healing balance among those who  die.  "Ve saw  moved peacefully through  no death  than we d i d among those whose bodies re-established a c e r t a i n degree of wellness" (p. 28). Joy and Levine assume that to be transformed by i l l n e s s requires more than just s u r v i v i n g i t . in a t t i t u d e s concerning how  Transformation c a l l s for a r a d i c a l change  one chooses to l i v e .  cancer patient i s not someone who but a person who  Thus, the exceptional  has simply l i v e d longer than  expected,  has been renewed and made whole by the i l l n e s s .  C a l l for a l i v e n e s s . Richard Moss provides another d e s c r i p t i o n of the transformation process, notable for i t s richness in d e t a i l (1981, 1985,  1986).  His t h e s i s i s that medical c r i s i s i s an opportunity for personal growth and holds the p o t e n t i a l for greater a l i v e n e s s . c o n s t i t u t e such an opportunity?  How does i l l n e s s  According to Moss, i t demands that we  l e t go of self-images and old i d e n t i t y ; i t requires that we remain unconditionally open to the moment; i t forces us to surrender to no longer being in c o n t r o l ; i t shows us the places in which we contract from f u l l a l i v e n e s s .  Serious i l l n e s s demands that we change i n a  r a d i c a l manner, not simply r e s h u f f l i n g our ways of thinking or a l t e r i n g our environment and l i f e s t y l e .  45  , Moss proposes that transformation i s a fundamental change in consciousness and an i n v i t a t i o n to r a d i c a l aliveness.  "Radical change  demands that we must d i e i n order to be reborn" (1986, p. 78). Some i n t e r e s t i n g hypotheses are posed by Moss about the o r i g i n s of cancer.  He suggests that cancer i s a high-energy system seeking to be  u t i l i z e d for c r e a t i v e purposes.  When i t i s not transformed  p s y c h o l o g i c a l l y i t becomes morbid.  According to Moss, the existing,  epidemic of cancer and other s t r e s s - r e l a t e d and degenerative diseases is an i n d i c a t i o n of the changes that need to take place i n the c o l l e c t i v e human consciousness. Mindell and many others.  This i s the same hypothesis voiced by  Whether or not i t i s true remains to be  confirmed by experience. E l i s a b e t h Kubler-Ross i s a pioneer i n 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 1975,  1978, 1981, 1982).  (1969,  According to Kubler-Ross, i n accepting our own  impending death, people are taken on a guest to discover what i s meaningful i n l i f e .  In coming to terms with death, we are compelled to  question our values and c o n t i n u a l l y re-evaluate how we elect to l i v e . Thus, facing the fear of death holds the p o t e n t i a l for human transformation.  Kubler-Ross believes that much of our l i f e energy i s  t i e d to the supression of anger, resentment, g u i l t or g r i e f work.  She  suggests that people need to express and discharge negative and destructive emotions  in order to experience wholeness and aliveness.  the dam of repressed energy i s l e t loose, people are then able to  As  46  experience s e l f - l o v e , connectedness and compassion  for others, and an  improved q u a l i t y of l i f e .  Recovering the s o u l . Larry Dossey i s a forerunner i n the f i e l d of mind-body medicine. His present focus i s 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 i l l n e s s i s 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  s u f f e r i n g and pain can break through our l i m i t e d 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, i s to awaken unity consciousness. Dossey r e f e r s to the wealth of c o n t r o l l e d r e p l i c a b l e studies which e s t a b l i s h that the mind behaves n o n l o c a l l y — i n essence, the mind i s a f i e l d , and we are a l l connected i n that f i e l d part of Universal mind.  (1989).  Small mind i s a  It i s t h i s concept of n o n l o c a l i t y which  explains such phenomena as f a i t h healing, healing by thought or prayer, spontaneous  cure, the placebo e f f e c t , communicating  through  telepathy,  and so on. A model of nonlocal medicine i s 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 u l t i m a t e l y one" (p. 265). of "mind" i s i d e n t i c a l to a d e s c r i p t i o n of s p i r i t . Dossey s research has broad and excitng implications: 1  His d e s c r i p t i o n  47  (a) Since we are a l l connected through mind/spirit, our hopes and prayers and e f f o r t s d i r e c t e d towards the healing of others has a d e f i n i t e , p o s i t i v e (and measurable) e f f e c t . (b) Health and healing are not just a personal but a c o l l e c t i v e a f f a i r . (c) There are global implications for doing one's healing.  Dossey  quotes James Hillman, who says, "Any a l t e r a t i o n i n the human psyche resonates  with a change i n the psyche of the world" (1989, p. 11).  Dossey suggests that the fate of the Earth could depend on our c o l l e c t i v e e f f o r t s , and that i t i s e s s e n t i a l to develop a sacred a t t i t u d e for the Earth and a l l things i n i t . earth are inseparable.  The human body and the body of the  This i s a compelling  benefit by drawing on people's  argument which could  experience.  Robert Stein (1976) adds to t h i s discussion that a l l diseases (and we might a l s o think of the present health of the earth) are a r e f l e c t i o n of humanity's a l i e n a t i o n from our s p i r i t u a l roots.  Like Dossey, he  c a l l s for a recovery of the soul i n r e l a t i o n to health and well-being. He proposes that the task of the soul i s to discover i t s e l f , and to give purpose and meaning to human a c t i v i t y .  "The mind can discover what  is needed only by l i s t e n i n g to and r e f l e c t i n g upon the subtle movements of the soul as i t expresses i t s e l f i n b o d i l y sensations, f e e l i n g s , emotions, images, ideas and dreams" (p.74).  Thus, i l l n e s s , and  especially life-threatening i l l n e s s , i s ideal terrain for s e l f - r e a l i z a t i o n , as i t reveals the soul, and the purpose of our existence.  48  Manifesting  love.  Bernie Siegel i s attempting to dramatically change the understanding of our capacity for s e l f - h e a l i n g , i n his work with cancer patients. His t h e s i s i s that love i s the bridge f o r healing. unconditional  "I am convinced that  love i s the most powerful known stimulant of the immune  system" (1986, p. 181). These are i n f l u e n t i a l words, coming from a surgeon and cancer s p e c i a l i s t .  The popular Beatles' song, " A l l You Need  Is Love", perhaps contains a t r u t h that takes us beyond the appealing lyrics.  Siegel adds, "I f e e l that a l l disease  i s u l t i m a t e l y related to  a lack of love, or a love that i s only c o n d i t i o n a l , f o r the exhaustion and depression  of the immune system thus created, leads to v u l n e r a b i l i t y .  I f e e l that a l l healing i s r e l a t e d to the a b i l i t y to give and accept unconditional  love" (p. 180). Thus, one's a t t i t u d e towards oneself, i n  Siegel's understanding, i s the most important factor i n healing and staying w e l l .  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 s e l f - l o v e , advocated by S i e g e l , i s supported by  the d e s c r i p t i o n others give of self-acceptance, discovering our soul or essence, manifesting  the d i v i n e , awakening and becoming whole.  These  themes are i n t e g r a l to the process of healing and transformation.  Summary and C r i t i q u e Physical D i s c i p l i n e s Assumptions. 1.  The mind has a powerful r o l e i n a c t i v a t i n g the healing of the  49  body!. 2.  A person's hopes, beliefs, w i l l , 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, w i l l to  live, belief in recovery, and determination are essential to the healing process. 3.  A l l 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  f a c i l i t a t e 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 them, to illness.  increase their stress levels and predispose  In facing d i f f i c u l t y , 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 e f f e c t i v e coping  s t r a t e g i e s , better communication s k i l l s , and how to take an a c t i v e role in combatting 12.  stress.  E f f e c t i v e coping improves the q u a l i t y of l i f e , makes one  h e a l t h i e r , and may a s s i s t a person in s u r v i v i n g a l i f e - t h r e a t e n i n g disease.  Criticisms. Mind-body research has made a tremendous c o n t r i b u t i o n to our understanding of the s i g n i f i c a n c e of the w i l l to l i v e and a p o s i t i v e b e l i e f system, i n f a c i l i t a t i n g healing.  Yet behavioural medicine does  not attempt to understand how t h i s healing occurs.  Physical d i s c i p l i n e s  do not address the whole person, thus healing i s understood simply as the return of p h y s i c a l , mental and s o c i a l well-being.  The concept of a  l i f e - t r a n s f o r m i n g process that takes place as healing occurs i s foreign to behavioural medicine. Behavioural medicine c l e a r l y demonstrates  that people can be taught  to change their thoughts and a t t i t u d e s in order to improve  t h e i r health.  Yet i t i s uncertain whether a change i n thought and a t t i t u d e i s s u f f i c i e n t for healing to occur.  Another question that  remains  unanswered i s whether e s s e n t i a l a t t i t u d e s such as the w i l l to l i 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 s u r v i v o r s .  This requires that we  understand t h e i r experience as they l i v e d i t .  Psychological D i s c i p l i n e s Assumptions.  1  1.  Having a purpose i n l i f e  i s e s s e n t i a l to well-being.  2.  Bach person has her or h i s own unique purpose.  3.  Finding a meaning i n s u f f e r i n g creates purpose i n l i f e , by  g i v i n g us d i r e c t i o n and leading to wholeness. 4.  Healing  from i l l n e s s i s a process which has meaning.  In  healing, we overcome a d i f f i c u l t y through personal e f f o r t and we are strengthened and renewed i n 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 s p e c i a l task i n 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  6.  To be whole i s to be a unity of opposites, and to be i n contact  with a l l parts of ourselves. our  i s to be whole.  To be whole i s to accept and learn from  i l l n e s s , pain and s u f f e r i n g .  To be whole i s 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 p a i n f u l and f r i g h t e n i n g one, yet i t holds  the r i c h p o t e n t i a l of our r e b i r t h .  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 i n d i c a t i n g the need for support, encouragement and d i r e c t i o n to people going through l i f e - t h r e a t e n i n g c r i s e s .  By using the  analogy of a journey, as developed i n anthropology, sociology and psychiatry, people are provided with a map for the change process. The v a l i d i t y of t h i s map must be confirmed by people's experience.  There  are no studies I am aware of that d i r 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 i n people recovering from l i f e - t h r e a t e n i n g cancer.  Spiritual Disciplines Assumptions. 1.  Manifesting our s p i r i t u a l nature i s the essence of what i t  means to be human. 2.  S p i r i t u a l nature i s revealed by following our path i n 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. 4.  This connects us to the source of healing.  C r i t i c a l i l l n e s s holds the p o t e n t i a l for s e l f - r e a l i z a i o n ,  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  s u f f e r i n g , we  learn what i t means to be whole human beings.  In t h i s  process we are healed. 6.  Healing is a s p i r i t u a l  journey.  7.  S p i r i t u a l growth requires that we awaken.  8.  The process of awakening i s a healing and transformative task,  r e q u i r i n g r a d i c a l change. 9. 10.  Transformation  i s a fundamental change i n consciousness.  Healing involves change:  changes within oneself, and changes  in one's r e l a t i o n to the world. 11.  Por healing to be transformative, i t must take place on more  than just a p h y s i c a l l e v e l .  It must involve the healing of the mind and  spirit. 12.  I l l n e s s teaches us the importance of love, and of l e t t i n g go of  feelings of being separate from others. 13.  In l o v i n g and caring for ourselves and others, we heal not only  i ourselves, but the world as w e l l . 14.  In healing, we c u l t i v a t e the q u a l i t i e s 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 p o t e n t i a l for awakening unity  consciousness  and healing c o l l e c t i v e human problems.  Criticisms. S p i r i t u a l d i s c i p l i n e s 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, l i f e - t h r e a t e n i n g i l l n e s s i s given an  important role in human l i f e .  I l l n e s s can be as great a teacher as any  s p i r i t u a l master. S p i r i t u a l d i s c i p l i n e s have i d e n t i f i e d the importance i n healing of  elusive yet pervasive phenomena such as love, c a r i n g , unconditional  support, and unity consciouness.  L i t t l e attempt has been made so f a r to  v a l i d a t e these phenomena as e s s e n t i a l to the healing process.  The  argument that one may learn and grow from i l l n e s s has global s o c i a l implications, which makes the study of t h i s process imperative.  Finding  common patterns of personal change brought about by l i f e - t h r e a t e n i n g i l l n e s s w i l l tend to confirm or deny these assumptions. Both s p i r i t u a l and psychological d i s c i p l i n e s need to v a l i d a t e t h e i r c l i n i c a l observations and t h e o r e t i c a l assumptions. for  broadening  our understanding  e x p e r i e n t i a l perspective.  This i s e s s e n t i a l  of healing and transformation from an  55  CHAPTER 3  Method  Existential-Phenoroenological Research This study documents the meaning of s u r v i v i n g a l i f e - t h r e a t e n i n g disease and being transformed by i t .  To f a i t h f u l l y elucidate t h i s  meaning requires a methodology which captures the experience as i t i s lived  by i n d i v i d u a l s .  The most appropriate method for t h i s task i s  existential-phenomenological (EP) research. Existential-phenomenology seeks to explicate the e s s e n t i a l nature of human beings and t h e i r l i v e d experience by using d e s c r i p t i v e and r e f l e c t i v e techniques.  E x i s t e n t i a l i s m i s a philosophy which "seeks to  understand the human condition as i t manifests i t s e l f i n our concrete, lived situations".  Phenomenology r e f e r s to a method which "allows us  to contact phenomena as we a c t u a l l y l i v e them out and experience them" (Valle & King, 1978, pp. 6-7). T r a d i t i o n a l 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 r e a d i l y observable, measurable and duplicable.  Thus, human experience has been deleted from i t s  investigation.  And yet to understand  i n d i v i d u a l s and t h e i r experience  of joy, of s u f f e r i n g , of surviving a terminal d i s e a s e — r e q u i r e s that we take human beings as they e x i s t :  l i v i n g , f e e l i n g , thinking, acting,  56  meaning-making creatures.  To deny human experience as legitimate  psychological content amounts to denying the whole of human existence ( C o l a i z z i , 1978). In order to both recognize and a f f i r m human experience, the phenomenologist reconsiders the concept of o b j e c t i v i t y . defines o b j e c t i v i t y as f i d e l i t y to phenomena.  C o l a i z z i (1978)  To be objective i s to  accurately and f a i t h f u l l y describe a phenomenon.  The EP method  o b j e c t i v e l y investigates human experience when i t remains true to the experience, and r e f r a i n s from c o n t r o l l i n g , changing or construing the experience according to some preconceived model or theory. The phenomenological  approach gives the researcher the following  four g u i d e l i n e s . F i r s t , you assume an a t t i t u d e s i m i l a r to an anthropologist or ethnologist.  You observe and describe a phenomenon—as  i t i s experienced  by p e o p l e — a s accurately as possible, i n order that the meaning of the experience for the i n d i v i d u a l i s retained. Second, instead of taking the stance of a d i s t a n t 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. phenomenological  In the  interview, you l i s t e n with the t o t a l i t y of your being  so that you are "present i n every imaginable way" ( C o l a i z z i , 1978, p. 64). Third, as a researcher you acknowledge that by i n v e s t i g a t i n g a phenomenon you are influencing i t .  You must then s c r u t i n i z e your own  presuppositions about the phenomenon being investigated i n order to be  57  aware of your biases.  Bias-free research  i s not possible; in f a c t , as  biases are r e a d i l y examined, you are motivated and propelled to more c l e a r l y understand the investigated phenomenon from a personal as well as objective point of view. Fourth, a thorough phenomenological study uses as many sources of d e s c r i p t i v e data and methods of data c o l l e c t i o n as possible.  Colaizzi  (1978) l i s t s the following sources and methods:  (a) d i a l o g a l interviews, which involve imaginative  listening;  (b) written d e s c r i p t i o n s , using the method of protocol a n a l y s i s ; (c) imaginative reflection; (d) observations  presence to the phenomenon, using phenomenological and of lived-events  (such as the experience of pain, or of  dying) which involves the method of perceptual  description.  In t h i s d e s c r i p t i v e study, a l l of these sources and methods of data c o l l e c t i o n are used to some extent.  They w i l l be explained  l a t e r in the  chapter.  Dramaturgical Approach Human experience i s conveyed i n various forms. form i s a fundamental and  natural way  Drama or story  of communicating experience.  "One  of the primary ways—probably the primary way—human beings make sense of t h e i r experience i s by casting i t in narrative form" (Mishler, p.67).  1986,  The a p p l i c a t i o n of dramaturgy—the a r t of dramatic composition—  to psychological  i n v e s t i g a t i o n is a t t r i b u t e d to Burke (1965, 1969)  and  58  well documented by Cochran (1986; Cochran & C l a s p b e l l , 1987). Dramaturgy o f f e r s a p r a c t i c a l method for capturing, i n s t o r y form, the meaning of s u r v i v i n g terminal cancer.  T e l l i n g the s t o r y of  how  having cancer has changed your l i f e i s a task that i n v i t e s and engages the i n d i v i d u a l .  Most people love to t e l l s t o r i e s , e s p e c i a l l y the big  s t o r i e s of t h e i r l i v e s l comprehensible,  Stories help make events and experiences more  and provide pattern, explanation and  motivation and behaviour  insight into  (Cochran, 1987).  Dramaturgy also guides the investigator in her e x p l i c a t i o n of assumptions about the phenomenon. involved in t h i s phenomenon?  As a researcher I ask, why am I  I look to my own  a survivor of cancer, I do have my own  experience and, while not  story of transformation.  out t h i s s t o r y helps c l a r i f y my assumptions, guides me  Writing  in formulating  research questions, and helps me a n t i c i p a t e the kind of s t o r i e s that will'be c o l l e c t e d . The use of a dramaturgical perspective i s valuable i n the process of data a n a l y s i s , in i d e n t i f y i n g themes of the experience and these themes into a h o l i s t i c ,  in weaving  integrated d e s c r i p t i o n of the experience.  Co-researchers In existential-phenomenological research, interviews take the form of an encounter  between i n d i v i d u a l s .  co-researchers ( F r i e r e , 1970).  Researchers  and subjects become  The researcher can be considered the  methodology expert, while the subject i s the content expert. they collaborate on the task of understanding  Together  the meaning of surviving a  59  l i f e - t h r e a t e n i n g disease.  They s t r i v e to be equals and to overcome the  d i v i s i o n s created by age, education and professional status. (For discussion purposes, p a r t i c i p a n t s w i l l be c a l l e d the co-researchers, and the researcher w i l l be known as such.) gently re-educated about t h e i r r o l e .  Co-researchers generally must be  Natural science has fostered the  impression that people are objects of research, expected to answer questions and f i l l possible.  i n the blanks and follow d i r e c t i o n as compliantly as  Conversely, co-researchers are reminded that they are the  authbrites on t h e i r own experience; they are encouraged to take t h e i r own d i r e c t i o n and time to t e l l t h e i r story i n t h e i r own unique way; they are i n v i t e d to edit t h e i r story so that i t expresses exactly what they want to say; and most important, they are engaged i n r e f i n i n g the research product so that i t f a i t h f u l l y describes t h e i r experience.  Selection of Co-researchers Cochran (1987) delineates the following c r i t e r i a f o r s e l e c t i n g co-researchers:  (a) experience with the phenomenon, (b) a b i l i t y to a r t i c u l a t e the experience, and (c) s u f f i c i e n t involvement as well as distance from the experience. The people in this study were recruited through a professional acquaintance who worked i n a large urban cancer h o s p i t a l . some long-term cancer s u r v i v o r s .  She knew of  (Long-term cancer survivors are  defined as people who have l i v e d longer than average with a  60  l i f e - t h r e a t e n i n g disease.)  At the time, I was  working at a smaller  h o s p i t a l where there were no known long-term s u r v i v o r s . considered to be a rare breed!  One  They were  physician estimates that "there i s  less than one chance i n a thousand that any s i n g l e physician w i l l encounter in his l i f e t i m e one true case of spontaneous cure or regression of advanced cancer"  (Glassman, 1983,  p.  long-term  324).  To be e l i g i b l e the p a r t i c i p a n t s had to be adults with the experience of s u r v i v i n g a minimum of f i v e years beyond the diagnosis of widely metastatic or terminal cancer.  (The five-year c r i t e r i o n i s a  s t a t i s t i c a l a r t i f a c t s i g n i f y i n g that people who  survive f i v e years  beyond t h e i r diagnosis of cancer have the same r i s k of dying from the disease as the general population.)  They were able to a r t i c u l t e the  personal growth that had occurred since the i l l n e s s .  They a l s o had  enough distance from the experience to r e f l e c t on i t s meaning while the experience  remained a l i v e and v i t a l for them.  The r a t i o n a l e of including d i f f e r e n t diagnoses  of cancer grouped  together under the umbrella of "widely metastatic or terminal cancer" was  to create a sample of people s u f f e r i n g from a l i f e - t h r e a t e n i n g  disease.  Cancer i s not one disease, but a c o l l e c t i o n of over  diseases (American Cancer Society, 1974).  Results may  100  then be v a l i d  for the larger population of people s u f f e r i n g from serious or life-threatening  illness.  The number of p a r t i c i p a n t s was determined in part by the p r a c t i c a l consideration of the wealth of data that would be generated co-researcher.  by each  It was a n t i c i p a t e d that a group of 5 to 7 subjects would  Gl  provide a r i c h bank of d e s c r i p t i o n s .  An opportunistic sample was  in that circumstance delimited p a r t i c i p a t i o n . contacts and included everyone who  I began with a l i s t of  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 new  taken,  little  information would be received by interviews with a d d i t i o n a l people.  Of course, every i n d i v i d u a l ' s story would be d i f f e r e n t and unique!  Yet  the researcher's task here i s to present a comprehensive d e s c r i p t i o n of the transformation process i n recovering from terminal cancer, without s a c r i f i c i n g the r i c h i n t e g r i t y of each account.  Demographic Information Demographic data was recorded during the interviews, and was not a factor in the s e l e c t i o n of co-researchers. Five i n d i v i d u a l s p a r t i c i p a t e d i n 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. man  Subsequent interviews with t h i s  c l a r i f i e d these d i f f e r e n c e s ; his protocol was omitted from the  c o l l e c t i v e d e s c r i p t i o n ; yet his i n c l u s i o n i n t h i s study was invaluable in h i g h l i g h t i n g the e s s e n t i a l ingredients of being a survivor.  A  survivor i s defined i n t h i s study as someone l i v i n g with the diagnosis of  cancer who  has surmounted t h i s c r i s i s through personal e f f o r t , and  emerged, transformed, with previously unknown strengths and  abilities.  Rationale for excluding P. from the analysis i s that while medical c r i t e r i a q u a l i f i e d 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 d e t a i l s were discovered only a f t e r many  hours of interview. Age, occupation, m a r i t a l status, socio-economic  l e v e l , ethnic  background and medical diagnosis were reported for each i n d i v i d u a l . Co-researchers provided t h i s information.  Instead of organizing t h i s  data by category, i t was j o i n t l y decided with the co-researchers to leave each d e s c r i p t i o n i n t a c t , so that i t gave a hint of the flavour of each i n d i v i d u a l who wanted his or her s t o r y to be heard.  The 5  p a r t i c i p a n t s were:  1.  D, a 72-year-old woman, married, with three c h i l d r e n and f i v e  grandchildren, a r e t i r e d 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 l a t e r . 2.  E, a 69-year-old woman, married, with two c h i l d r e n , and a host  of grandchildren and great-grandchildren. c l a s s , I r i s h - E n g l i s h background. advanced lymphoma.  Diagnosed  A r e t i r e d hairdresser, middle eight years ago with  Because the cancer was widely spread  throughout  (gallbladder, l i v e r , spleen, pancreas, lymph nodes and bone marrow) she was  t o l d at the time that she was expected to l i v e three to s i x months. 3.  F, a 65-year-old man, married, with two c h i l d r e n (and now a  very proud grandfather of three), a r e t i r e d accountant/office manager, lower-middle  c l a s s , French-English background, diagnosed ten years ago  with stomach cancer.  Due to l i v e r metastases,  expect to l i v e four to s i x months.  he was t o l d he could  63  4.  M, a 49-year-old woman, married, with three s t e p c h i l d r e n , a  r e t i r e d computer systems analyst, English, middleclass, diagnosed years ago at the age of 16 with a fibrosarcoma.  35  This involved a tumour  that was attached to the shoulder blade and over the years spread to the arm, 5.  neck, back and s k i n . P, a s i n g l e man,  aged 44, a school teacher, middleclass  presently lowerclass as a r e s u l t of his i l l n e s s ) , very Scots.  (though  Diagnosed  about f i v e years ago, just s h o r t l y before his father died of cancer, with a carcinoma  of the bowel which had spread to the l i v e r and  now  perhaps i s i n the lungs.  All  p a r t i c i p a n t s are Canadian,  residents of B r 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. period.  A l l of the interviews were completed  Each interview lasted from 2 V  i n d i v i d u a l l y determined  to 5 hours.  Co-researchers  the length of t h e i r interviews.  12 hours of interview were conducted  The F i r s t  2  within a six-month  Between 6 and  with each p a r t i c i p a n t .  Interviews  The story of s u r v i v i n g l i f e - t h r e a t e n i n g 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 i s not easy to t e l l :  64  it  i s complex, f u l l of deep f e e l i n g s , spans the course of many years,  and c a r r i e s a potent meaning that i s a challenge to convey, e s p e c i a l l y to others who do not share a s i m i l a r  experience.  , How e s s e n t i a l i t i s to e s t a b l i s h a s i t u a t i o n of t r u s t and comfortable rapport between researcher and co-researchers cannot be overstated.  Only i n a r e l a t i o n s h i p where a true encounter  occurs can  the deeper layers of f e e l i n g and meaning be revealed. The r o l e of the researcher i s to f a c i l i t a t e t h i s encounter by a c t i v e l y enaging  i n imaginative l i s t e n i n g .  The researcher must be  present to the co-researcher i n every imaginable way—that i s , not just l i s t e n i n g , but f e e l i n g and l i v i n g through t h i s experience with the co-researcher as i t i s recounted  ( C o l a i z z i , 1978).  Empathic  response,  r e f l e c t i o n , paraphrasing, asking for d e t a i l s and probing for meaning are also important s k i l l s for the interviewer to employ. The  first  interview was loosely structured.  I t was an informal  meeting i n the p a r t i c i p a n t ' s home that began with tea or coffee and provided the opportunity to become acquainted as two i n d i v i d u a l s 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 s t o r y with a beginning, middle and end (see following Preamble).  A d d i t i o n a l research questions were asked, as appropriate, to  help provide focus and to e l i c i t more d e t a i l about the experience. Questions were not intended to standardize the interview.  These  questions were formulated from the review of the l i t e r a t u r e as well as the examination  of personal presuppositions about the phenomenon.  65  Preamble. The purpose of the study I am doing i s to discover what i t means to survive a l i f e - t h r e a t e n i n g i l l n e s s and be transformed by i t . By transformation I mean a healing process which i s more than getting well p h y s i c a l l y — i t means becoming a more whole person. I'd l i k e 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 life. The drama w i l l have a beginning, middle and end. Please use as much d e t a i l as you l i k e 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 d i e , and the changes that occurred as you went about l i v i n g . The end of the story could be t h i s present time or the point at which you f e e l you had recovered from cancer.  1  1. 2. 3. 4. 5. 6.  7.  Interview questions.  What were you t o l d i n the beginning about your i l l n e s s ? What was happening i n your l i f e at t h i s time? Was there a time when you c l e a r l y remember thinking that you might die? What kept you going? What was t h i s time l i k e for you? Was t h i s time a turning point i n any way? When you think of how your l i f e was before your i l l n e s s , can you say i n what ways l i f e i s d i f f e r e n t f o r you now? (Probe for a t t i t u d e s toward work, l e i s u r e , r e l a t i o n s h i p s , s u f f e r i n g , r e l i g i o u s f a i t h and death.) Based on your experience of surviving cancer, do you have any suggestions for others going through a s i m i l a r experience?  The V a l i d a t i o n Interview The purpose of the second set of interviews was twofold:  (a) to  involve p a r t i c i p a n t s a c t i v e l y in t h e i r role as co-researchers, and (b) to  provide a measure of i n t e r n a l v a l i d i t y . As co-researchers, p a r t i c i p a n t s were i n v i t e d to read the  t r a n s c r i p t s of t h e i r 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 s u r v i v i n g l i f e - t h r e a t e n i n g cancer that was drafted from a l l the interviews.  They were asked i n the v a l i d a t i o n  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. P a r t i c u l a r a t t e n t i o n was d i r e c t e d to the themes that were implied i n t h e i r interview or conveyed through t h e i r person, but not d i r e c t l y stated.  The co-researchers  survival:  were also engaged as editors i n the story of  softening c e r t a i n statements, emphasizing others, d e l e t i n g or  adding d e t a i l s so that the f i n a l research product f a i t h f u l l y t h e i r experience.  When the co-researchers  described  were convinced that the  d e s c r i p t i o n r e f l e c t e d t h e i r experience, i n t e r n a l v a l i d i t y was achieved.  Other Descriptive Methods Of the four d e s c r i p t i v e methods used i n 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 The  l i s t e n i n g — h a s been already  delineated.  second method i s that of protocol a n a l y s i s .  In t h i s study the  interviews yielded protocols, and two of the p a r t i c i p a n t s offered other written d e s c r i p t i o n s :  an autobiography arid a s e r i e s of a r t i c l e s written  during the i l l n e s s and published Appendix). present  in a community p e r i o d i c a l (see  A d e c i s i o n was made to e d i t the interviews rather than  them verbatim, for two reasons.  F i r s t , in t a l k i n g , many people  digress from the topic at hand, ramble here and there, change t h e i r  67  focus, and  lose t h e i r t r a i n of thought.  c l a r i t y and  Editing a transcript  comprehension (Broadfoot, 1973).  contributes  Second, co-researchers  f e l t that t h e i r t r a n s c r i p t s presented them as rather garrulous, requested that e d i t i n g be done.  These condensed t r a n s c r i p t s were  analyzed (see Protocol A n a l y s i s ) .  The autobiography and  writing were analyzed in a s i m i l a r way, units ( G i o r g i , 1975), and  and  creative  f i r s t by looking for meaning  then by extracting s i g n i f i c a n t statements.  Meaning units are statements which convey a c e r t a i n idea, theme or description.  In the written material offered by co-researchers, meaning  units selected were those concepts which elaborated question posed by t h i s study. to begin acquainting speech, and  upon the major  Looking for meaning units i s a good  way  oneself with the ideas of a person's writing or  then s t r u c t u r i n g these ideas.  Further analysis i s conducted  by extracting s i g n i f i c a n t statements from these meaning u n i t s . A t h i r d d e s c r i p t i v e method i s that of phenomenological r e f l e c t i o n . In being f u l l y present to these co-researchers and r e f l e c t i n g on  the  meaning of t h e i r experience, my own  way.  This fostered a rare and involves  l i f e was  affected in a deep  genuine learning experience.  Genuine learning  "wresting a l l that we can learn from the a c t u a l i t y of our  l i v e s as e x q u i s i t e l y unique, i n d i v i d u a l persons" ( C o l a i z z i , 1978, as distinguished  from the a c q u i s i t i o n of facts and  information.  learning r a d i c a l l y restructures our world-view, our a t t i t u d e s and so that—what I learn changes A fourth and t h i s method you  own p.135)  Genuine values,  me.  f i n a l method i s that of perceptual  f a i t h f u l l y express what i s perceived  description.  With  through the senses  68  of  s i g h t , hearing, f e e l i n g , e t c . rather than thinking, analyzing or  summarizing.  Jager  description.  This method uncovered some important phenomena i n t h i s  study:  (1978) provides a good model of perceptual  the experience of being with someone who i s i n pain, the  experience of being with someone who (thinks he) i s dying, the experience of  being with survivors who are f u l l  of l i f e .  These lived-events  ( C o l a i z z i , 1978) are described b r i e f l y i n the following chapter.  Procedure Co-researchers heard about the study through a health p r o f e s s i o n a l of  t h e i r acquaintance  or a fellow s u r v i v o r .  The study was discussed  between them before they were contacted by the researcher. researcher determined  The  whether each person met the c r i t e r i a for  p a r t i c i p a t i o n and was w i l l i n g to p a r t i c i p a t e , explained the study i n greater d e t a i l , discussed time commitment, and set up the interview. The dialogal. his  interviews were informal, unstructured, non-standardized and The co-researcher was encouraged to t e l l the s t o r y i n her or  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. transcribed.  Interviews were audio-recorded and  The written copies served as protocols which were analyzed  according to C o l a i z z i  (1978).  Before the second interview, co-researchers were sent copies of the t r a n s c r i p t s of their interviews, a l i s t of the themes derived from a l l the interviews, and an exhaustive narrative c a l l e d the phenomenological  69  description.  They were asked to read through t h i s material, and invited  to become active e d i t o r s , r e f l e c t i n g upon and writing i n any deletions, additions and changes.  Protocol  Analysis  Analysis of the t r a n s c r i p t s followed Colaizzi  the method outlined by  (1978, pp. 57-67).  1.  The accounts of the p a r t i c i p a n t s ' experience of s u r v i v i n g  terminal cancer and being transformed by i t were read and re-read.  This  renewed f a m i l i a r i t y with the protocols, and allowed the researcher to acquire  a f e e l i n g tone for each  2.  interview.  S i g n i f i c a n t statements that r e l a t e d to the research  were extracted  question  from each protocol and written on colour-coded index  cards d i s t i n g u i s h i n g each of the f i v e p a r t i c i p a n t s .  Similar statements  were grouped together with the idea of choosing one statement that best represented s i m i l a r statements, and eliminated of colour-coding  r e p e t i t i o n s . The process  statements was an excellent v i s u a l t o o l for discovering  patterns. 3.  Formulated meanings were derived  from each s i g n i f i c a n t  statement by the process of creative i n s i g h t .  These meanings attempted  to capture what the p a r t i c i p a n t s meant by what they said e x p l i c i t l y or i m p l i c i t l y , and were e s s e n t i a l l y themes derived  from the s t o r i e s .  The  researcher has to go beyond the o r i g i n a l data to a r r i v e at contextual meanings.  The actual words of the p a r t i c i p a n t s 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 l e v e l of a b s t r a c t i o n to express what various statements have in common, without l o s i n g the meaning these statements have for the individual.  Por example, the theme "appreciating one's uniqueness"  was  derived from the statements of four i n d i v i d u a l s :  What I say may be t o t a l garbage for anybody else but me. Out of the f i v e b i l l i o n people on t h i s earth, I am unique, and what I say could be unique as w e l l . You are yourself instead of t r y i n g to keep up with the Jones*. I used to do things and say things and behave a l o t 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 l i k e me a l l the time. And then I r e a l i z e d that i t was quite okay not to l i k e somebody and for somebody not to l i k e me. And now, at t h i s r i p e old age, I don't care whether anybody l i k e s me or not! You see, i t doesn't matter!  The  l i s t of themes was  created by t h e o r e t i c a l sampling and  the p r i n c i p l e of saturation (Glaser and Strauss, 1967). was  analyzed  using  Each protocol  in succession, using a b u i l d i n g block approach to add  themes to the c o l l e c t i o n as they appeared. reached when there was  A saturation point  new  was  s u f f i c i e n t overlapping of data that l i t t l e  new  information would be discovered with a d d i t i o n a l interviews. The researcher endeavored to remain true to the p a r t i c i p a n t s ' experience  by r e f e r r i n g these themes back to the o r i g i n a l protocols and  looking for deviations and d e l e t i o n s . evident.  The researcher questioned  At t h i s point ambiguities became  whether the derived themes captured  the essence of the s i g n i f i c a n t statements, and noted s p e c i f i c 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 p a r t i c u l a r protocol and also needed s p e c i a l attention with the co-researcher for v a l i d a t i o n .  The rationale for including material not  mentioned in a person's d e s c r i p t i o n of their experience i s outlined by C o l l i e r and Kuiken  (1977).  "Selective a t t e n t i o n , forgetfulness or an  i n a b i l i t y to express c e r t a i n aspects of an experience" (p. 215) r e s u l t in omitting d e t a i l s of an experience that may  may  be a c t u a l l y quite  important. Another step, not mentioned by C o l a i z z i , was taken to insure f i d e l i t y of the themes.  The l i s t of themes was  outside reviewers (Cochran and colleagues), who  examined by several determined  whether the  themes accurately expressed the meaning of the co-researchers' statements.  The reviewers also looked for ambiguity and redundancy i n  the themes, and made suggestions for improving 4.  The l i s t of themes was  clarity.  organized into c l u s t e r s that provided a  structure of the data while remaining true to each p a r t i c i p a n t ' s experience. 5.  The themes were woven into an exhaustive narrative of what i t  means to survive a l i f e - t h r e a t e n i n g disease and be transformed by i t . This i s known as the phenomenological  d e s c r i p t i o n and i s written as a  story which reveals the prototypal pattern of the experience. 6. of  The phenomenological  the experience.  d e s c r i p t i o n was condensed into a summary  This i s c a l l e d the e s s e n t i a l structure of the  experience, and i s designed to communicate the heart of the experience  72  as c o n c i s e l y and unequivocably as p o s s i b l e . 7.  The l a s t step was to v a l i d a t e the findings by returning to the  co-researchers and asking whether the themes and story accurately r e f l e c t e d t h e i r experience.  P a r t i c u l a r a t t e n t i o n was given to aspects  of t h e i r experience which were neglected or poorly stated, and to r e f i n i n g the s t o r y so that i t c o r r e c t l y described t h e i r experience. data from these interviews were worked into the f i n a l  product.  New  73  CHAPTER 4  Results  Experience of the Researcher The process of doing t h i s study was a t r a n s f i x i n g 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 t h e i r l i v e s . The basic assumption  which guided t h i s research i s that c r i s e s  crush us and mould us, thrusting us forth into new crippled.  I hypothesized that people who  i l l n e s s have died a d i f f e r e n t d e a t h — a  survive a  l i f e or leaving us life-threatening  psychological one.  In  recovering from terminal cancer, I expected that people would undergo a healing process that would r a d i c a l l y change t h e i r 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 l i t e r a t u r e 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 r e a l l y living for. At t h i s point I would l i k e to delineate my r e f l e c t i o n s about the research question, as these r e f l e c t i o n s constitute phenomenological  data.  important  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  i n t h i s r e s e a r c h — f r o m formulating the question, to  having such intimate dialogues with people, to y i e l d i n g my own  l i f e to  be changed i n the process. I was unprepared  for the enthusiasm the co-researchers had for t h i s  project, for t h e i r w i l l i n g n e s s to open up t h e i r l i v e s to a stranger and share t h e i r struggles so honestly. I was  immediately struck by the presence of these s u r v i v o r s .  They  are very d i f f e r e n t people from so many other cancer patients I had known over the years from my work in the health f i e l d . not at a l l average.  In essence they are  They are f u l l of ideas and passions; they love  people and they love l i f e ; they love t a l k i n g , sharing their own and touching other l i v e s i n a meaningful way. confident, unique As I r e f l e c t e d  lives  They are v i t a l , v i b r a n t ,  individuals. on the meaning of t h e i r 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 i n t h e i r l i v e s and  they came to be the kind of people they were. s t o r i e s of becoming more whole.  They were t e l l i n g  how  me  And these s t o r i e s were c o n t a g i o u s — t h e y  put probing questions to the l i s t e n e r and engaged her as a fellow t r a v e l l e r on the path of growth and wholeness. For instance, in dialoguing with M. about how she helps other cancer patients, I am suddenly j o l t e d into thinking about my own M. has something to teach me and a l l of us when she says,  life.  75  What would you l i k e to do with the rest of your l i f e ? What do you r e a l l y , r e a l l y want to do, and why haven't you done i t ? And what's stopping you doing i t ? M. i s not t a l k i n g to the taperecorder; she i s dialoguing with me and encouraging me to r e f l e c t 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 i s we want in l i f e and how we want to l i v e , to grab hold of our dreams and to l i v e them—to follow our b l i s s ! ! One of my great teachers, Amy  M i n d e l l , talks about i l l n e s s as a  meaningful event, not only of personal s i g n i f i c a n c e , but of c o l l e c t i v e value.  As I experienced the powerful impact that these i n d i v i d u a l s were  having upon my l i f e ,  I understood how i t i s that survivors of a terminal  i l l n e s s can teach us about e s s e n t i a l c o l l e c t i v e 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 t h i s same message  upon everyone who would l i s t e n .  I found myslf going through a s i m i l a r  process to the c o - r e s e a r c h e r s — a s s e s s i n g my values, s e t t i n g new p r i o r i t e s , looking to my sources of enjoyment, giving more value to relationships.  Interviews Initial  Interviews  Two of the p a r t i c i p a n t s were interviewed twice i n the f i r s t of  interviews due to mechanical  recording of the i n i t i a l format for the second  series  problems which affected the audio-  interview.  In recapturing the l o s t data, the  interview was d i f f e r e n t ; to have asked  these  76  co-researchers to share the same s t o r y simply for the purpose of tape recording would have lacked genuineness.  The second interview was  more d i a l o g a l , involved more d i r e c t questions based on the interview, and f a c i l i t a t e d the sharing of new facets of the experience.  What was  even  initial  insights and d i f f e r e n t  l o s t in comprehensiveness was  in strengthening the r e l a t i o n s h i p between interviewer and  gained  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 t h e i r lives.  It was  the f i r s t  time that any of the co-researchers had been  i n v i t e d to talk without r e s t r i c t i o n s about how their l i v e s .  For several of the co-researchers t h i s dialogue  empowering and changed them as persons, session can.  having cancer had changed  just as a good c o u n s e l l i n g  They f e l t they had gained greater understanding  path, and confirmed  was  their purpose in l i f e .  of t h e i r  This v e r i f i e d C o l a i z z i ' s  (1978) observation that d i a l o g a l 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, r e l i v i n g poignant and p a i n f u l and transforming moments of l i f e .  We c r i e d and laughed together, sharing  s t o r i e s , singing songs, sampling sharing a l i f e experience. of  the new homemade w i n e — i n t i m a t e l y  This study attempts to capture the flavour  the experience; what a c t u a l l y transpired cannot be  adequately  described i n words. Interviews were an encounter, a "meeting of l i k e souls" (according  77  to one p a r t i c i p a n t ) , and would l a s t from 2 / 1  interview, and  2  to 5 hours.  Of each  1 to 3 hours was spent on the actual t e l l i n g of the story,  t h i s portion of the interview was audio-recorded and transcribed.  (See Appendix f o r t r a n s c r i p t s of the interviews and other written sources in t h e i r edited form.)  V a l i d a t i o n Interview The  themes and the d e s c r i p t i o n of the transformative  experience  were validated by the the co-researchers i n the v a l i d a t i o n interview. This i s a c r u c i a l step for the researcher misrepresenting included  i n d i s p e l l i n g her doubts about  the p a r t i c i p a n t s * experience.  The four co-researchers  i n the f i n a l analysis unanimously validated the s t o r y of  transformation  with statements l i k e , "This i s e x c e l l e n t ! "  say i t any better!" the information  "I couldn't  "I think you've done a marvellous job of taking  from a l l of us and organizing  i t so w e l l . "  Where  changes and refinements were suggested, they were acknowledged as accounting for i n d i v i d u a l differences which d i d not detract from the trueness of the story.  "Sure, I might say i t a b i t d i f f e r e n t , but  that's because we're a l l i n d i v i d u a l s . "  "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 d e s c r i p t i o n of some facet of the experience were worked back into the f i n a l product u n t i l p a r t i c i p a n t s agreed that t h e i r experience was t r u t h f u l l y represented. They e n t h u s i a s t i c a l l y supported the idea of a common story of change i n survivors that s t i l l allowed for i n d i v i d u a l d i f f e r e n c e s .  This concept  78  is supported by Cochran (1986) when he says, " S i m i l a r i t y in content (of the s t o r i e s ] o f f e r s no basis for g e n e r a l i z a t i o n .  However, what a l l  these people have in common i s that they attained personhood" (p. 92). For some, t h i s a t t a i n i n g of personhood meant becoming more f u l l y they w e r e — l i v i n g from the core of t h e i r being.  who  For others t h i s  transformation process meant discovering resources that were previously dormant, and developing new s k i l l s and a t t i t u d e s .  The Case of P. It was mentioned e a r l i e r that one p a r t i c i p a n t ' s story was  very  d i f f e r e n t from the others and that h i s protocol was omitted from the c o l l e c t i v e story.  An analysis of these d i f f e r e n c e s helps to expand the  d e s c r i p t i o n of being a survivor. The e s s e n t i a l 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 a c t i v a t e your w i l l to l i v e with determination, courage, hope and optimism.  A survivor has the conviction that l i f e  i s worth l i v i n g , i s  buoyed up by the love and support of others, and has i d e n t i f i e d a clear purpose in l i v i n g .  Setting goals for the future becomes a way of  expressing that you expect to l i v e and have things to l i v e f o r . Survivors are transformed  in the process of recovery by embarking on a  journey that r a d i c a l l y changes t h e i r l i v e s .  People who  are transformed  by i l l n e s s celebrate l i f e as f u l l and r i c h and meaningful,  experience  more joy i n l i v i n g , and develop c l o s e r , more s a t i s f y i n g r e l a t i o n s h i p s .  79  In the process of healing, they become whole and unique people, and give i n s p i r a t i o n to others. Let us look now to the case of P.; c a l l him Paul for discussion purposes.  Paul i s within a couple of months of meeting the five-year  s u r v i v a l mark, which perhaps gives him less perspective on h i s i l l n e s s than the other co-researchers, who were diagnosed from 8 to 35 years ago.  And yet despite some s i m i l a r i t i e s with the others, dialogues with  Paul revealed g l a r i n g d i f f e r e n c e s . Paul lacks that undaunted f a i t h and b e l i e f i n s u r v i v a l .  He  doesn't communicate a strong w i l l to l i v e , he has doubts about his s u r v i v a l , and often f e e l s l i k e giving up. I'm not a cure. I'm just surviving at : i t f e e l s l i k e less than s u r v i v i n g . I by the edge. I wonder i f I'm going to l i t t l e while I don't think that I am. I have in the past.  the moment. And sometimes f e e l l i k e I'm just hanging on make i t through. This l a s t I f e e l more p e s s i m i s t i c than  We might ask i f i t i s indeed c r u c i a l to believe i n your s u r v i v a l in order to overcome a l i f e - t h r e a t e n i n g i l l n e s s .  own  A  prospective study could better answer t h i s question, which i s beyond the scope of t h i s study.  C l i n i c a l experience with cancer patients,  however, does support t h i s assumption: l o s t the w i l l to l i v e and recovered. or who  "I never met a patient who  had  Every physician I met or spoke to,  wrote about the w i l l to l i v e , confirmed that without i t s u r v i v a l  was not possible" (Glassman,  1983).  Survivors support t h e i r stance by a l i g n i n g themselves with other cancer survivors and people who courage and determination.  have conquered  t h e i r d i f f i c u l t i e s with  Survivors are successful people and they  80  surround themselves with success s t o r i e s .  Paul i s d i f f e r e n t .  i d e n t i f i e s with f a i l u r e and with death: i n his own l i f e , die  from cancer, and i n s u f f e r i n g heroes.  He  i n those who  As he searches for a heroic  theme for guiding his l i f e , he r e c a l l s the s t o r i e s of two Greek heroes, Sisyphus and Prometheus, both of whom are e t e r n a l l y punished by the Gods for evoking t h e i r disfavour.  Sisyphus was condemned forever to  r o l l ! a rock u p h i l l as punishment for t r i c k i n g Death.  For Paul, i l l n e s s  i s 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 i d e n t i f y with] death and f a i l u r e ; lostness and d r i f t i n g i n the sea. I f e e l a b i t l i k e Job who was given a l l these hard tasks, a l l t h i s unfair treatment. And I think he dies i n the end. I discovered l a t e r , i n the l i t e r a t u r e , that t h i s mythical theme of Sisyphus i s common to the experience of cancer patients (Lockhart, 1977).  According to Jungian a n a l y s i s , t h i s i s a theme of recurrence  without r e s o l u t i o n .  Jungian analysts would encourage the dreamer to  a c t i v e l y work with dream material, and create a new ending.  Lockhart  suggests that "recurrent dream and recurrent cancer may be r e l a t e d " (p.65).  I t i s i n t e r e s t i n g that Paul's spontaneous image i s common to  other cancer patients, and t h i s would undoubtably have been beyond h i s 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 i l l n e s s for him w i l l be simply to endure his s u f f e r i n g with f o r t i t u d e , l i k e Job and Sisyphus.  Viktor  Frankl, who writes extensively from his experience as a concentration camp survivor, says that "to l i v e i s to s u f f e r ; to survive i s to find  i  81  meaning in the s u f f e r i n g " (Frankl, 1984, p. 9). Sometimes the only meaning l i f e has comes from learning to endure s u f f e r i n g , becoming ennobled  by i t , and experiencing a sense of accomplishment by  courageously enduring that s u f f e r i n g . Survivors who have been transformed by t h e i r i l l n e s s have a marvellous capacity to search c o n t i n u a l l y for the good i n any experience, redefining t h e i r problems i n a p o s i t i v e l i g h t , comparing their own s i t u a t i o n o p t i m i s t i c a l l y with those who are worse o f f — i n accepting t h e i r fate.  essence,  Paul, on the other hand, presents himself as  d i s s a t i s f i e d , angry, c r i t i c a l and a f a i l u r e .  He blames others f o r h i s  d i f f i c u l t i e s , and views h i s i l l n e s s as an escape from the challenges i n life. 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 e a r l y . I t 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 f o r himself, they are the kind of goals that simply keep him occupied, and do not give purpose to h i s life.  He lacks the v i s i o n of a future, and f e e l s trapped, punished and  defeated by his i l l n e s s . I f e e l trapped by cancer. I have less energy, I have less hope, I have less future. I just haven't done that sort of r i s k i n g and making a commitment to do something. This psychologist s a i d , "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 f i g h t , and i s just beginning to use h i s i l l n e s s as an opportunity to r e f l e c t on what i s r e a l l y to him.  important  82  There's a l o t of issues around cancer. S p i r i t u a l issues. l i f e i s worth l i v i n g . What makes me a happy person.  Whether  At t h i s point he has more guestions than answers, more ruminations than a c t u a l change in a t t i t u d e or behaviour. in a limited way,  He i s beginning to experience,  some p o s i t i v e 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 a l i v e , more so than before. People I've met through cancer have been a b l e s s i n g . Paul experiences l i f e as a struggle rather than r i c h and meaningful, hides his i l l n e s s from others, and p u l l s back from close relationships. ' I haven't t o l d anybody i n the school system [where I work] that I have cancer. In some ways I f e e l l i k e I've been t r y i n g to distance myself. If I'm going to die I don't want to be that c l o s e . Prankl descibes the s t r i v i n g to find meaning, whether i t i s something meaningful that we do or that we create, or experiencing love and knowing that somebody needs us, as a primary motivational force in life  (Weisskopf-Joelson i n V a l l e & King, 1978).  Whether Paul can and  does i n v i t e his cancer to r e a l l y transform his l i f e question perhaps for another study.  is a fascinating  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 t h e i r i l l n e s s i s to be inspired, moved, and changed in some i n d e l i b l e way.  It i s quite a d i f f e r e n t experience to be with Paul.  experience of dialoging with someone who  was  The  often uncomfortable, in  pain, and thinking he was dying can best be expressed using the method  83  of  perceptual d e s c r i p t i o n . Perceptual d e s c r i p t i o n was defined e a r l i e r as f a i t h f u l l y expressing  what i s perceived with the senses of s i g h t , hearing, f e e l i n g , e t c . rather than thinking, analyzing or summarizing. Paul i s a handsome, well-dressed and -groomed man. e r e c t l y , with composure, and commands a t t e n t i o n . his  He s i t s  When he t a l k s about  i l l n e s s and h i s l i f e a change comes over him.  He collapses in h i s  c h a i r , closes h i s eyes, and s l i 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 h i s seat, groan, close h i s  eyes, d r i f t away s i l e n t l y f o r some time, and return a l i t t l e disoriented to  the conversation at hand.  of  experiencing an event by giving i n to the contagion of passion  (Jager, 1978). state.  One researcher talks about the p o s s i b i l i t y  To be with Paul i s to experience the contagion of t h i s  I found myself becoming sleepy and d i s t r a c t e d and f e e l i n g  lifeless.  This contrasted sharply with my experience in the other  interviews, when I experienced the contagion of being a l e r t , f u l l of v i t a l i t y , passion and purpose. Without Paul's s t o r y we might have inferred that simply i n s u r v i v i n g a l i f e - t h r e a t e n i n g disease one i s transformed by i t . survivors show, the process i s not a passive one at a l l . matter of just making the five-year s u r v i v a l mark.  As other  I t i s not a  The process of being  transformed by c r i s i s demands courageous and wholehearted  engagement,  and the willingness to r i s k a l l that i s f a m i l i a r , ordinary and routine.  84  Context tor Analysis A story comes into being because of the gap between what i s and what ought to be (Cochran, 1986).  In t h i s story, "What i s " i s being  t o l d you have a l i f e - t h r e a t e n i n g i l l n e s s . old age.  "What ought to be" i s happy  In the beginning of t h i s story the c o n f l i c t i s made e x p l i c i t .  It i s a c r i s i s that makes the story of transformation take place. Indeed,  i t appears that i t i s the negative s t a t e — a l l that c o n s t r i c t s  us or wounds u s — t h a t i s the ground meaning and the c a l l to change.  for the story, the search for  The middle of the story i s the path  toward the r e s o l u t i o n of the c o n f l i c t , and shows how changes are made. The end of the s t o r y i s not n e c e s s a r i l y happy old age; i t might be a d i f f e r e n t kind of a l i v e n e s s . In r e f l e c t i n g on how to organize the many themes of these survivors' s t o r i e s , a number of p o s s i b i l i t i e s became apparent. One mode i s a p e r s o n a l i t y p r o f i l e — i n t h i s case, a p r o f i l e of a person who survives a l i f e - t h r e a t e n i n g disease and i s transformed by i t . Here we would expect a c o l l e c t i o n of d i s c r e t e t r a i t s that would describe t h i s kind of person, a l b e i t from t h e i r point of view.  What would be  completely lacking would be the d e s c r i p t i o n of the p r o c e s s — t h e a c t i v e and courageous  involvement of becoming the kind of person who does  surmount terminal cancer. A second mode of d e s c r i p t i o n i s the story, a "completed a c t i o n or drama with a beginning, middle, and end" (Cochran, 1986).  Here we can  present the autobiography of a s u r v i v o r — t h e story of how a person comes to be this way.  This study suggests a s p e c i f i c type of story:  that of  85  a p o r t r a i t , which i s a story d e s c r i b i n g a person. of d e s c r i p t i o n . composition  This i s a t h i r d mode  Cochran (1986) expains that the p o r t r a i t i s "a  in which q u a l i t i e s interdepend and interpenetrate" (p. 106),  presenting a person's regnant or dominant p o s i t i o n , and capturing the constancy and wholeness of a person.  A person's  l i f e story i s i m p l i c i t  within t h e i r p o r t r a i t . In  t h i s p o r t a i t of transformation, the regnant p o s i t i o n i s that of  being a survivor and a f i g h t e r .  The story i s a journey of healing  i n i t i a 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 C l u s t e r s of Themes.)  The middle of the story i s the  beginning of change, designated as "the beginning of new describe the end of the story as " r e b i r t h " .  life".  Organizing the themes into  three stages, and l i k e n i n g the story to a hero's journey, was by the i n d i v i d u a l s who  I  validated  shared t h e i r l i f e experience as s u r v i v o r s .  In d e s c r i b i n g t h i s story in three stages there i s no intention of d e p i c t i n g a l i n e a r process.  Instead, these parts indicate a general  beginning, middle and end of a story of transformation.  Of course, there  is no r e a l end to t h i s change process, only one that i s marked by t h i s moment in time.  Themes are organized in such a way as to provide  structure i n the n a r r a t i v e , and do not suggest a d i s c r e t e series of steps that cumulate in personal transformation.  For each i n d i v i d u a l  the story i s unique, and l i k e 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 1. 2. 3. 4.  to Change Being threatened by death B e l i e v i n g in your own s u r v i v a l Reinforcing the w i l l to l i v e Asking for advice and questioning experts  B.  Beginning of New L i f e 5. Having a f i g h t i n g s p i r i t and determination 6. Being w i l l i n g to take r i s k s 7. Maintaining hope, optimism and a p o s i t i v e a t t i t u d e 8. Having a sense of c u r i o u s i t y about l i f e 9. Facing your fears 10. Distancing your problems 11. Redefining problems in a p o s i t i v e l i g h t 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 c r e a t i v e 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 b e l i e f s about s u r v i v a l 25. Questioning old values and s e t t i n g new p r i o r i t e s 26. Having a c l e a r 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 s a t i s f y i n g r e l a t i o n s h i p s 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 l i k e l i h o o d of an untimely death becomes a concrete r e a l i t y  when you are t o l d by your doctor that you are expected to l i v e only a few months longer or, because of widespread metastases, t h i s i s the implication. D.  When I f i r s t got cancer when I was f i f t y - t w o , I didn't f e e l so much threatened by death. I thought, I have cancer, what am I going to do about i t ? I f e l t threatened by death ten years l a t e r when I got a metastasis. I thought, well now I'm dying, that's for sure. The second time round, t h i s i s what you think.  E.  I t 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 s i x months to live."  F.  The r e s u l t s of the scans were that i t had invaded the mouth of the l i v e r . And I asked [the doctor], "How long have I got?" And I only remember h i s saying, "You have four to s i x months to l i v e . "  M.  When I was r e a l l y i n great pain and I was a l l bent over, and they didn't see how they could operate without taking o f f my e n t i r e arm from the neck here, and they s t i l l couldn't promise that that would be s u c c e s s f u l . They weren't sure how much i t had spread. They didn't say that you're going to d i e in as many words, but the implication was there. And then the next time that was very d e f i n i t e was in Montreal when they sent me back to d i e because I had t h i s tumour i n here that they couldn't operate on, with everything to the brain going r i g h t through the middle of i t ! They t o l d me that I should go b a c k — a s soon as I was well enough to t r a v e l from Montreal to England—to spend as much time as I had l e f t with my family.  2.  Believing in your own s u r v i v a l There i s f a i t h i n your own s u r v i v a l and healing, even when many of  your own family have died from cancer.  You have the b e l i e f that cancer  can be cured, and refuse to accept dying u n t i l i t i s time.  88  D.  The n e i g h b o u r s a l l had me d e a d . And I s a i d , " I ' m not d y i n g t o d a y . " A l o t of p e o p l e a s s o c i a t e c a n c e r w i t h d e a t h . And you s e e , I didn'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 t o 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 to. Look a t me!" Because I know i n the o l d e n days c a n c e r meant death. Now i t d o e s n ' t . But u n l e s s you have seen o t h e r p e o p l e 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 c a n c e r i s d e a t h .  F.  When I was i n danger t h e n 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 t o l i v e , b u t t h e 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 t h o u g h t 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 t o 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 time d i d I e v e r 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 w a n t i n g 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 For some t h e r e  live  i s a sudden s h i f t  from b e l i e v i n g i n the  of premature d e a t h t o w a n t i n g t o l i v e .  prognosis  O t h e r s e x p e r i e n c e s o m e t h i n g of  life  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.  A n o t h e r t h i n g t h a t gave me a b o o s t was t h e 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 e x p e c t e d 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 d a u g h t e r was i n H a w a i 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 n e c k . 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 almost cried. I t was d i f f e r e n t , knowing p e o p l e c a r e d . I don't think 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 t o get done—what k i n d of f u n e r a l . The n e x t day [a c a n c e r s u r v i v o r ] had come t o see me. S h e ' d t o l d me t o 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 m y s e l f and get on w i t h i t ! I f she c o u l d do i t t h e n why c o u l d n ' t I? No d o c t o r ' s g o i n g t o t e l l me when I ' m g o i n g t o d i e !  89  F.  I used to force myself to do a c e r t a i n amount of work. If I progressed i n my a b i l i t y to work, I was progressing i n 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 t h i r t y barrel-loads a day. And one day I was f e e l i n g t e r r i b l e , just awful. And I thought, "You're crazy! Somebody i n your state of health would be l y i n g in bed, comfortable as p o s s i b l e . They wouldn't be i n the cold and wet and the s l e e t ! " I was sick as a dog. I'd just had chemo. "Why are you doing t h i s ? " And another l i t t l e voice s a i d , "If you don't do t h i s , you're l e t t i n g y o u r s e l f down. You're not doing the r i g h t thing. People die in t h e i r 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 s t r u g g l e ! ! But I never found i t such a struggle again as I d i d then, and I progressed from there. It seemed to be a t r a n s i t i o n a l moment of my life. 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 q u i t t i n g . It did enhance my self-image by not q u i t t i n g . 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 d i e d — t h a t could have been something that inspired a w i l l to l i v e . To see i t a l l ! E s p e c i a l l y nature! I always f e l t that God made a very b e a u t i f u l place. I think I b a s i c a l l y loved life! Just being there!  4.  Asking for advice and questioning experts You begin to confront unknown aspects of your future by a c t i v e l y  seeking out information and d i r e c t i o n from professionals. D.  When I got i n h o s p i t a l I said to the doctor that I wanted to know what was coming down. And he s a i d , "As soon as I know, y o u ' l l know." And that was very h e l p f u l . Even bad news i s 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 a f t e r - e f f e c t s of a drug. Whether I spent most of my day i n bed, or whether I was up doing things. And both Nick and I t e l l t h i s to other patients. Keep a record. Write out your questions. Write out two l o t s — o n e that you give to your doctor, and the other you keep. I f i r s t wrote out how I was f e e l i n g , 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 l o t of doctors w i l l slough i t o f f . You get r i g h t by that door, put both hands out and don't l e t him get out u n t i l you have your questions answered. You need to get your  90  questions  answered.  It's  your b o d y .  F.  I asked [my d o c t o r ] , "What t r e a t m e n t s do you h a v e ? " 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 to 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 always asked a l l the q u e s t i o n s .  5.  H a v i n g 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 t o know what you want i n o r d e r t o f i g h t f o r i t .  to 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  You want 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 f r o m 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 t h e y 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 t o 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 h u s b a n d , who had b r o u g h t the f u n e r a l papers s i g n ] t o g e t 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 p e r s o n t h a t [ s e e s ] 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 s o m e t h i n g 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 a l w a y s push f o r the optimum. I ' v e o f t e n t h o u g h t t h i s a b i l i t y t o e x t r a c t the a b s o l u t e maximum f r o m 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 u p !  M.  Over the y e a r s God has i n d e e d been h e l p i n g me i n a d i f f e r e n t w a y — 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 t o s u r v i v e i n s p i t e of t h e t i m e s 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_.  Being w i l l i n g to take There  f o r me t o  risks  i s a need t o t a k e more r i s k s , as t h e r e 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  to 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 s a i d , "I can't t e l l you what to do. But for me i t ' s l i k e swimming across the lake. The f i r s t time you s t a r t you don't know whether you can make i t to the other side. But i t ' s fun to t r y . "  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 l i k e to t r y i t ? 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 r i s k s , e s p e c i a l l y 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 t r i e d i t on anyone e l s e . How do you feel? There's no promises here." And I s a i d , "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 w i l l i n g to take r i s k s before u n 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 s i t u a t i o n 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 p o s i t i v e a t t i t u d e You are an optimist.  You can maintain a p o s i t i v e d i r e c t i o n and,  while s t i l l having negative thoughts, you don't allow n e g a t i v i t y to predominate.  There i s a good balance of p o s i t i v e and negative thinking,  while a n t i c i p a t i n g the best possible outcome. D.  If i t ' s a chore to be p o s i t i v e i t ' s not going to work. The reason you should have p o s i t i v e thinking i s when you're laughing and when you have humour, you f e e l better. If you're well you have negative thoughts as well as p o s i t i v e thoughts. And i t ' s okay to have a negative thought, as long as you don't l e t 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 i s causing i t to change. And they figure they've got the cure for cancer. If t h i s  92  works i t ' s going to be dandy. F.  You can always talk people into optimism. There's a rub-off e f f e c t on both pessimism and optimism. A p o s i t i v e a t t i t u d e i s absolutely e s s e n t i a l . I've seen cases where a negative a t t i t u d e has k i l l e d someone.  M.  I f e e l that a p o s i t i v e attitude of mind can be b e n e f i c i a l i n absolutely everything, and that any medical treatment w i l l have a better chance i f the patient i s less depressed and s t r e s s f u l . Negativism breeds negativism! It's got to get better. Just s t i c k , i t out a b i t longer and i t can't get any worse.  8.  Having a sense of c u r i o u s i t y about  life  There i s the f e e l i n g that l i f e i s an adventure, and even though t h i s i l l n e s s i s not what you bargained f o r , there i s s t i l l an open, c h i l d - l i k e c u r i o u s i t y 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 l i v e day by day and not expect to know what's coming.  E.  There's a b i g world out there!  F.  I'm curious and i n q u i s i t i v e at the best of times, and the worst of times, too.  M.  I have always been a very, very curious person. wanted to know why and how.  9.  Let's look!!  I've always  Facing your fears The biggest fear i s the fear of death.  You are w i l l i n g to confront  this fear d i r e c t l y . D.  Sooner or l a t e r you've got to face up to i t — n o i t i s . Even i f I'm frightened I ' l l s t i l l face would say, "This i s n ' t f a i r ! My parents l i v e d And the next day I'd say, "To h e l l with t h i s ! " myself.  matter what fear up to i t . One day I to t h e i r e i g h t i e s . " And I'd enjoy  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 l o t 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 l o t of people, e s p e c i a l l y 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 r e a l manifestations of cancer except what the doctor was saying was happening to you?  M.  I've never been a f r a i d of dying. I wonder what i t would be l i k e to d i e , as i f I'm curious to find out! I t ' 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 r e a l l y come to terms with l i v i n g u n t i l you're not a f r a i d of dying.  10.  Distancing your problems Anything which creates an outward focus i s h e l p f u l i n distancing  your i l l n e s s .  Thinking of others instead of yourself i s one good way of  r e d i r e c t i n g your thoughts.  At times you might also minimize  the  implications of having a l i f e - t h r e a t e n i n g disease, or make p o s i t i v e comparisons with others.  One woman with cancer can accept the miracle  of her 35-year s u r v i v a l by sometimes simply denying her  illness.  D.  You can look around and see people much worse o f f than you doing very w e l l . What r e a l l y helps i s 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 t h i s way. And thinking of others instead of yourself i s a big help. When my husband had to have an operation, being concerned for him got my mind o f f myself. Anything, a b s o l u t e l y anything that gets your mind off yourself i s good.  E.  It i s something that i s always i n 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 l o t of cancer p a t i e n t s . If they're not thinking of themselves they're a l o t better o f f . Get your mind o f f yourself and your cancer. It makes you f e e l good doing something for somebody e l s e . [My husband] had open-heart surgery. I had to think of him. And he was squawking about me t r a v e l l i n g on the buses to v i s i t him in the h o s p i t a l . 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 e l s e .  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 l i v e an illusory life? 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 p o s i t i v e thing because i t helps you get along with your l i f e .  M.  The fact i s that I've never been what I c a l l i l l with cancer. I f e e l 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 s t r e t c h up s t r a i g h t — I didn't f e e l 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 a f t e r that point, but I was s t i l l around—I s t i l l f e l t a l r i g h t , 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 l i f e - t h r e a t e n i n g ? When I had i t up here i n my neck with a l l the main a r t e r i e s and blood vessels and nerves and everything going through to the brain, they sort of sent me home to die o f f . But I survived that, you see, and that was amazing. I was s t i l l here a f t e r a l l that. So how could i t have been cancer? How could i t have been so f a t a l ? 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 f e e l that everyone else had been wrong. I've never f u l l y accepted the cancer perhaps. I t ' 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 i n a p o s i t i v e l i g h t  Problems are solved by reframing f i n d i n g something favourable  or redefining the problem and  about i t .  D.  The s i d e - e f f e c t s of the treatment are not pleasant, but i t ' s s t i l l i n t e r e s t i n g . Fascinating! Like labour! And the other thing about the body, given half a chance i t w i l l r e b u i l d and mend!  F.  Because a l l chemotherapy i s a matter of experimentation. They t r y and t r y to find what for you i s the strongest that you can t o l e r a t e without k i l l i n g you. It's a race! I t ' s a wonderful race i f you think of i t .  M.  With the chemotherapy and the r a d i a t i o n 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 i n the short-term, because hopefully i n 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 l a t e r . I'm lucky! I can say that because I've survived and I'm s t i l l f e e l i n g a l r i g h t . And  95  okay, so I get pain and discomfort, but i t ' s not d e b i l i t a t i n g . can l i v e with i t .  12.  I  Being able to laugh at yourself L i f e ' s d i f f i c u l t i e s are not taken so s e r i o u s l y .  You are able to see  humour even i n the losses brought on by the i l l n e s s , and look for opportunities to express pleasure instead of pain. D.  The [cancer support] meeting i s not morbid at a l l . I get a r e a l bang out of going! Some of the things that are s a i d ! Did I t e l l you about the man who said one evening—there were a l o t of breast patients t h e r e — " I don't know why these women make such a fuss over breasts. You know, a f t e r , a l l ! " I s a i d , "Well, i t sure screws up your skinny dipping!"  E.  And i f you can laugh at y o u r s e l f . Now, we were i n 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 o f f . ] 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 i n 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 N e l l i e . She had cancer that had spread everywhere. Here was I, about 125 pounds, s h u f f l i n g along, and here was N e l l , as skinny as I was. I s a i d , " N e l l , you know that hot t i n roof that Tennesee Williams wrote about? God knows we'd make a l o t of r a 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 l o s t my sense of humour I would have been l o s t 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 i n the door a l l I could think of was going to l i e down and have a good o l d howl. And the phone rang just as I came i n . I answered the phone, and I chatted, and when I put down the receiver I went into the bedroom l i k e an ultimatum, r e a l l y . I looked at the bed, and I s a i d , "What have I come i n here for? I'm not crying anymore." Well then I f e l t cheated. Then I laughed. How stupid to f e e l I was cheated out of a good cry!  13.  Being inspired by others who overcome t h e i r d i f f i c u l t i e s Other cancer patients show not only that s u r v i v a l i s possible, but  96  also that you can go on l i v i n g day to day with a l i f e - t h r e a t e n i n g condition. to  You look to these survivors to strengthen your motivation  l i v e , to have more courage and to f i g h t for l i f e .  Other patients you  meet, not n e c e s s a r i l y those with cancer, have suffered even more t e r r i b l e s i t u a t i o n s and l i v e d though i t .  These people support your  stance in maintaining your f i g h t i n g s p i r i t and determination. 0.  Now t h i s other lady, she i s a b s o l u t e l y marvellous. She i s probably the one [person with cancer] that I think i s 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 f i f t e e n 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 g o l f i n g and doing the things that she wants to do now.  F.  I was often impressed by how the women [cancer patients] handled t h i n g s — t h e i r f o r t i t u d e , their sense of humour, t h e i r a b i l i t y to jusL accept l i f e . Men tend to be d i f f e r e n t . 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 l a d y — [ a n 89 year old woman who was determined to walk on her new false leg into her n i n e t i e t h birthday p a r t y ] — a n d the d e f i n i t e idea of s e t t i n g 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 L i v i n g with cancer creates a high l e v e l of s t r e s s .  the importance  You recognize  of a c t i v e l y seeking out support or simply accepting the  support that i s offered.  Often t h i s support comes from outside the  family, and may be found i n cancer s e l f - h e l p  groups.  E.  Everyday you're f e e l i n g s i c k . I could [ s t i l l ] talk on the phone. I took a p e n c i l [when I couldn't use my fingers] and d i a l e d .  D.  Just having people there that you can talk to helps. in h o s p i t a l , I r e l i e d on Stew completely.  When I was  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 f e e l I needed to go out and search for i t because i t was on ray doorstep r i g h t away. I had people coming i n from my Lodge, from my soccer club, from my recorder s o c i e t y , 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 i n i s o l a t i o n and not have t h i s tremendous outpouring of sympathy. And I also think that women are f a r more supporting to women than men are. And the bonding I think i s closer and tighter with women. What I'm suggesting i s that women, by bonding together, r a i s e each other. I would think that women do survive when they have cancers the same way that men have. And men do tend to i s o l a t e themselves. I t could be that we are a t f a u l t as men for s h i e l d i n g ourselves. And i t could be that you women r e a l i z e that another woman i s your s a l v a t i o n . And that an emotional bonding can be of enormous help.  M.  I got a l o t of support from ray f r i e n d s . Without any doubt. I never had any d i f f i c u l t y t a l k i n g about i t , and they didn't e i t h e r . I think i f i t hadn't been for so many friends I don't know what I would have done, r e a l l y .  15.  Seeking out meaningful  communication  There i s a sharing of concerns and a n x i e t i e s , and a willingness to talk about your i l l n e s s and not hide i t from others. You seek out opportunities to have mutually s a t i s f y i n g conversations, and talk  less  about things that don't r e a l l y matter. D.  And they say, " I f I don't talk about i t , know and I know i t doesn't go away.  i t w i l l go away." You  E.  And I've been w i l l i n g to talk about i t , not hide i t , which a l o t of people do.  F.  I've always talked about what I thought was important. make small talk anyway.  M.  E s p e c i a l l y 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 t a l k i n g about i t . I'm not embarrassed.  I can't  98  16.  Pursuing self-knowledge As you begin thinking about what i s r e a l l y important i n l i f e ,  are  motivated to know yourself better.  you  You become more s e l 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  d i f f e r e n t l y the next time.  Some found that writing was another good  way to understand t h e i r c a p a b i l i t i e s , f e e l i n g s and motivations. D.  You know, you don't know a l l about yourself, r e a l l y . 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 i l l n e s s — c a n c e r or M.S. or heart d i s e a s e — t h e more you know about yourself, the more i t w i l l help you out. And learning how to get along i n your personal l i f e . You got to learn how sooner or l a t e r . And l i f e - t h r e a t e n i n g 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 p u l l s you back out! You b i t c h about l i t t l e things and you know you need to change. There's no reason to b i t c h .  F.  I made writings during the time I was i l l . I had always kept a d i a r y for years and years. I glean from d i a r i e s . 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 r e a l bad time at work. And i t transpired that the p r o b a b i l i t y i s that I had a duodenal ulcer then. Over the three years up to the time that these i n t e r n a l problems were happening, they suspected that t h i s turned into cancer. Without the s t r e s s the ulcer would probably not have progressed to anything.  M.  The group therapy started opening things up for me. When I was i n that h o s p i t a l and I just had to talk and talk and t a l k . 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 s i g n i f i c a n t . I sat there i n the c l a s s and you l i s t e n to these theories and i t was just l i k e seeing myself in a l o t of the s i t u a t i o n s . E s p e c i a l l y i n work s i t u a t i o n s . And then writing my book got me to look at a l o t of things I hadn't looked at before.  17.  Learning to manage stress You become more self-motivated and learn how to change s i t u a t i o n s  99  to ease the s t r e s s l e v e l and  f e e l better for i t . An a c t i v e stance is  taken i s s o l v i n g problems. D.  Sometimes when something i s worrying you, y o u ' l l t r y d i f f e r e n t 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 r e a l l y not my problem. This i s 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 s t r e s s . 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 s o c i a l workers there. And I spent the whole day with them, l i s t e n i n g to other people's problems, and mine didn't seem quite so bad! A l o t of people had a l o t of worse problems than mine! I learned that hearing other people's problems could halve my own!!  F.  I don't get into s t r e s s f u l s i t u a t i o n s any longer. That's one thing that I've learned very strongly. Avoid s t r e s s . Not because stress in i t s e l f i s dangerous, but because i t ' s so much easier and i t ' s so much more e f f e c t i v e to avoid s t r e s s . The s t r e s s f u l person never wins.  M.  How I managed s t r e s s e a r l i e r 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 i n 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 i n 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 s t r e s s better. I'm a slow learner in some ways.  18.  Finding c r e a t i v e 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. when d i f f i c u l t i e s D.  Feasible a l t e r n a t i v e s are negotiated  are encountered.  When I couldn't do the lapidary my husband got me doing [ s i l v e r s m i t h i n g ] . And then, when that got to be too d i f f i c u l t , I did a l o t 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 l o t about designing, because whatever f i t me here didn't f i t me anywhere e l s e .  100  E.  And my own granddaughter, she was 16 at the time, she said to her mom, " I f grandma i s i n 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 s a i d , " I f you want marijuana j u s t go down to the l a d i e s ' restroom." They couldn't t e l l me to go and do t h i s , but they t o l d me where I could find i t .  F.  I l e f t a l l the major decisions up to Ann [my w i f e ] . I don't do that now because she won't l e t me, and I didn't do i t before. Now s h e ' l l say, "No, that's not good enough. We have to come to a j o i n t d e c i s i o n . " So, I was shielded from a l o t of problems. And i t r e a l l y was a r e v e l a t i o n for my wife. It helped her become far more a s s e r t i v e .  M.  I can't think of any didn't work one way, way around i t . Like hold doors open with on with my nose or my  19.  Setting short-term  goal that I didn't a c t u a l l y achieve. If i t i t worked another. I figured out a d i f f e r e n t hanging clothes on the l i n e with one arm! I my feet and my rear end! I put l i g h t switches chin!!  evolving  goals  You begin to cope more e f e c t i v e l y by s e t t i n g 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 it. But to have a goal, and something to look forward to, i s 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 l i v e 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 s u f f e r e r the prospect that he's got something to l i v e f o r . "Live for today" is what you always hear. But don't we l i v e for birthdays and weddings and anniversaries? "Live for the future" is what I think. Survival i n 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 l i v e for the future. We always do. We l i v e for the great things. Isn't there an old saying, "The a n t i c i p a t i o n i s 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 s p e c i a l outing, a movie, or going out to dinner. Without consciously recognizing i t then, I was s t a r t i n g to give myself more reasons to l i v e again... [Autobiography] It gave me something to look forward t o . Even when things kind of went a b i t wrong I would always come back and go s t r a i g h t ahead because I got t h i s goal, t h i s sort of shining l i g h t at the end of the tunnel that I'd got to reach. [Interview]  20.  Learning to compensate There i s an acknowledgement that you don't always get what you  think you deserve in l i f e , and that happiness l i e s in accepting what is.. You learn to accept unexpected compensations. D.  This i s what I t e l l people about cancer: "There's compensation. You give up t h i s , 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 s u r v i v a l i s 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 i s not bad because you've got cancer. You may meet new friends, new things might happen to you, you can widen your horizons, your c h i l d r e n may become more caring, your husband may r e a l i z e how much he cares for you, i t may bring you closer together, y o u ' l l s t a r t 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 s i t u a t i o n s .  D.  I have had to give up a whole l o t since I got cancer, but I've also gained some other things that f i l l that void. I t ' 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 l e t go of thinking about cancer. I t ' s not the most important thing in your l i f e . Everytime you got s i c k , you don't think, "Oh, i t ' s back. I'm going to d i e . " 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 t h i s greater resource. I think a l o t of the problem with s u r v i v a l is that the sheer shock of knowledge of t h i s 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 t h i s and recognize i t myself. You have much greater peace with yourself i f t h i s happens.  M.  I had to change a l o t of the things that I wanted to do. I had to change my a t t i t u d e 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 c h i l d r e n l i k e 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 i s an acceptance of your own pain, i l l n e s s , s u f f e r i n g and the  p o s s i b i l i t y of dying from this i l l n e s s .  You are able to l e t go of  regrets and s e l f - p i t y . D.  When I f i r s t found the cancer I s a i d , "I'm 52 years o l d . 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 t h i s i s i t , thank God my c h i l d r e n 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 l o t , but I enjoy each day so i f I die tomorrow, i t ' s not so h o r r i b l e . I don't f e e l 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 i s an experience! Death i s an experience, just the same as being born i s 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 t h i s i s 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 m o r t a l i t y before. Even at 60 [when I was diagnosed], I wasn't ready to d i e . "I'm not  103  going to d i e ! ! " It was such a shock. Even though i t was through the family. Now, the thought of dying i s always i n 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 p o s i t i v e s of death. Thinking i t ' s not such a good l i f e a f t e r a l l . L i f e i s f u l l of t o i l and care. And I don't believe n e c c e s a r i l y that there's a better l i f e to come. I found myself purposely making something p o s i t i v e about the prospect of death, and reducing the p o s i t i v e about the prospect of l i v i n g . A l l i s not black and white. I t could be a r e l i e f ! This helped me an awful l o t . I convinced myself that dying i s not a l l negative. Although I didn't f e e l I was going to d i e , 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 f e e l I was going to d i e . You accept the p o s s i b i l i t y , the p r o b a b i l i t y , 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 b u l l e t from t h i s 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 t h i r t y years more than the medical profession expected.  23.  Enjoying l i f e  fully  There i s the conviction that l i f e more joy and happiness  i s to be enjoyed.  You create  i n 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 b a r r e l of apples. And one was going rotten, so he ate that one. And the next day there was another one going r o t t e n . And he ate that one. At the end of the b a r r e l he'd eaten a whole barrel of rotten apples! And I said [to t h i s woman who had cancer], "Why don't you go out and have some fun?"  E.  A l o t of people when they f i r s t come i n , they're down i n the dumps, which i s 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 f o o l around and everything e l s e . Happiness i s more important than anything e l s e .  F.  I was going to r e t i r e at 60, and t h i s 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 r e a l l y l i v e ! ! Let's take our t r i p s ! 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-andso?" M.  If you f e e l good today don't worry about tomorrow. and make the most of today. [Autobiography]  24.  Defining your b e l i e f s about s u r v i v a l  Get out there  There i s an i n v e s t i g a t i o n of the s p i r i t u a l or r a t i o n a l b e l i e f s that guide your l i f e .  These b e l i e f s are defined and c r y s t a l l i z e d into an  explanation for why you are s t i l l  living.  D.  I can watch a flower grow from a seed, and wither and d i e , and i f that's a l l there i s , that's f i n e . I'm a f r a i d you can't c a l l me a b e l i e v e r . I guess I'm a b i t from Missouri. I know what there i s here, and I don't know i f there i s something there [ i n heaven].  E.  I believe there i s a Supreme Being and He i s the only one that knows when you're going to d i e . We're not church people, but there i s a b e l i e f there. And He must have more work for me or I would have been gone.  F.  This i s a doctor i n whom I have f a i t h ; I am a person i n need; people do survive; why shouldn't I be one of those survivors? So when he t o l d 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 i n that way. We a l l answer a need of somebody e l s e .  M.  I am more c e r t a i n than ever that some higher Power has been looking a f t e r me. How many times did I ask myself why God had kept me around? I wasn't very r e l i g i o u s 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 t r y to find out what i t was. [Autobiography] There was some inner power that was giving me the strength to survive b e l i e v i n g that things would get better, and that i t was worthwhile continuing and t r y i n g to struggle and keep on. [Interview]  105  25.  Questioning o l d values and s e t t i n g new p r i o r i t i e s In  finding what i s true for y o u r s e l f , many o l d habits and routines  and values are no longer meaningful.  As p r i o r i t i e s change, you a c t i n  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 a f t e r my cancer I went back. I've been back a few times since then. I've been to Hawaii. I've been down to C a l i f o r n i a a few times. What I'm t r y i n g to say i s that thing I hadn't done was important to do, and a f t e r 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 f e e l 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 i t ? What do I want to do with i t ? 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 l i v e f i v e years, i f I l i v e ten years, what do I want done? So you redefine your l i f e . Do you want to c a r r y on the same way, or do you want to do i t d i f f e r e n t l y ? Since then I've taken to c r a f t s . To h e l l with the housework! I ' l l get i t done. When my kids were growing up you could eat o f f the f l o o r s . When my great-grandchild comes h i s knees may be d i r t y from crawling around on the f l o o r , but I'm not worried. If i t don't get done i t don't get done. And I do my c r a f t s instead. My husband's going to r e t i r e [early] so that we can t r a v e l . We look ahead. And since both of us have been sick t h i s i s what we have been doing. Because we got to think of enjoying the r e s t of our l i v e s .  F.  Most of us are hooked into the necessity for working. We're s t i l l somehow committed to t h i s prospect that people are sent on t h i s 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 i n the garden. I can walk. I can go on Caribbean c r u i s e s . We aren't pressed f i n a n c i a l l y . We might as well t r y and do the things that we've put off doing. Spend the money that we've never spent before. Forget worrying about our o l d age and not having enough to l i v e on. Do things now instead of always being concerned with whether i t ' s the r i g h t thing to do. We d i d change. We d i d readjust our thinking. Shall we do things now or l a t e r ? S h a l l we do them at a l l ? Now we say, "Now i s the future!" Having cancer pushed me into e a r l y retirement and a l l that t h i s involves.  106  M.  People get r e a l l y hung up on cleaning the house! And I r e a l i z e that I used to. I used to get r e a l l y hung up on things that didn't r e a l l y matter. Now I do a l o t 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 l o t of spontaneous things, which is a l o t more fun.  26.  Having a c l e a r purpose in l i f e You determine your purpose in s u r v i v i n g .  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 c h i l d r e n . 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 i s our immortality coming up. You and I aren't immortal. Our memory i s 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 l i v e i t . To reach out, to experience as much as possible, to love more, to touch more, f e e l more, enjoy more, even to hate more and f e e l anger. [Autobiography] Do things while you can, while you're s t i l l able. Don't put i t o f f . Don't wait u n t i l you can afford i t . Or you're r e t i r e d . Because by then, who knows? You could have had a heart attack and be s i x 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 f e e l i n g 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 f a i l u r e s than I ever learned from winning. Once you find that you can surmount that f a i l u r e , you gain a l i t t l e confidence i n yourself. There i s nothing wrong with f a i l u r e . 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, e s p e c i a l l y emotionally, they don't hurt us and they don't worry us as much as they do people who have been closeted and c a r e f u l l y protected. And I have a f e e l i n g that t h i s 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 l i v e d with i t for so long. I've r e a l l y forgotten what i t was l i k e to do i t any d i f f e r e n t . I find myself doing s i l l y things l i k e 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 f i n d meaning i n s u f f e r i n g and struggle, and can see the  as a teacher and an opportunity rather than a curse.  illness  Some f e e l much  r i c h e r for the experience, while others simply embrace i t . D.  I have learned a l o t from having cancer, because you learn even from pain. You learn! But i t ' s not pleasant. I don't f e e l 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 life. [These struggles have made me] more understanding. A stronger person. I ' l l s t i c k to my c o n v i c t i o n s . You're more thoughtful, thinking of other people. Cancer taught me how to be more a l i v e .  F.  I can say that I'm a r i c h e r person for having had cancer. I t ' s been an i n t e r e s t i n g 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 t h i s . I wouldn't have the joy of recovery, the  108  achievement of recovering. people have done.  I wouldn't have appreciated what other  M.  I'm not s o r r y that I had [cancer] i n a l o t 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, t r a v e l l e d more, acquired so many wonderful friends en r o u t e — 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 i s the sense of being lucky and thankful to be a l i v e even in  the midst of d i f f i c u l t i e s .  You experience  that you had not f e l t in the same way  something precious i n l i v i n g  before.  D.  But the thing you have to learn having cancer i s t h a t — a n d even you who are probably very h e a l t h y — i t ' s something that everybody has to do, i s to take one day at a time. Because you could get h i t 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 l i v 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 r e t i r e maybe in f i v e more years! We might not be here in five years. E i t h e r one of us! We might as well do what we want. I'm glad to be a l i v e ! Everything else is a bonus.  F.  Survival i n 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 . L i f e i s worth l i v i n g when i t goes on." And there i s a s i l v e r l i n i n g to l i f e . I t ' s not always going to be t r a v a i l . L i f e is something to be engaged i n ! Time i s more precious.  M.  I think when a l o t of people have gone through c e r t a i n things which are very d i f f i c u l t , a l o t of s u f f e r i n g , they become rather d i f f e r e n t types of people. A l o t 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 s u f f e r i n g 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 a l i v e , and what a wonderful world i t is that I have been p r i v i l e g e d to remain i n ! To me there i s so much beauty to see i n the world.  109  30.  Being able to express feelings f u l l y A more diverse and  intense expression  of f e e l i n g i s developed.  some, t h i s means learning to l e t out emotional tension and c o n f l i c t s , v e r b a l i z i n g f e e l i n g s of anger, fear, doubt, f r u s t r a t i o n , regret  For and  and  resentment. D.  I didn't have to have a r a d i c a l . And they discovered that removing the pectoral muscle didn't help one bloody b i t . I s a i d , "If only.." Now, i f - i t i s i s a waste of time. But I had to find out you see. In f a c t , f e e l i n g sorry for yourself is a t o t a l waste of time. I t 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 l i k e 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 s t a n d o f f i s h . 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 r e a l l y glad to see them! Like even with my l i t t l e great-grandson, h e ' l l come i n and say h i , and now I say to him, "Have you got a k i s s for me?" And so he comes r i g h t 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 i s doing something that bugs me, I'm not a f r a i d to say, "Well, cut i t out!"  F.  Oh, [my wife and I] y e l l and scrap l i k e the d e v i l , but i t ' s r e a l l y kind of safety-valve releases. I'm not shy to say how I f e e l .  M.  But ever since [the l a s t 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 v i o l e n t f e e l i n g s . I didn't express feelings of anger or f r u s t r a t i o n or hurt. I kept a l o t of that to myself. Even at work I was a f r a i d to l e t 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 l a t e r . I learned a l o t when I went to that group therapy session a f t e r 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  for  in the world by taking a stance, standing  yourself, and v e r b a l i z i n g opinions and passions  that need to be  up  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 l i k e 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 f o r myself!  E.  I have to cut [my husband) down to s i z e once in awhile, because I've b u i l t 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 u n t i l I came to the conclusion that I was never going to survive on that s t u f f , and the only way I could force things was not to take them. So f o r 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 d i e taking that s t u f f ! I think you're on the wrong track. I w i l l d i e before I take any more of i t , so you might as well know that." He s a i d , "I'm glad you've given me some d i r e c t i o n to take." And he phoned my wife and s a i d , "Come and pick him up." I was home that night. That's when my weight was down to 117 pounds. Refusing that s t u f f made me f e e l quite good, l i k e I was master of my own f a t e . I knew that i t wouldn't work!  M.  I'd rather have cancer than be b l i n d . And I c e r t a i n l y wouldn't want to be a quadriplegic or paraplegic, or brain-damaged, or retarded. I'd rather be dead. I don't want to l i v e any longer than when I'm capable of s u r v i v i n g 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 i n the event that anything should happen. I f e e l that when your time has come, when God has c a l l e d , I think you should go.  32.  Expressing You  your independence  i d e n t i f y your own needs and and pursue your own i n t e r e s t s rather  than adjust to the expectations  of others.  You become s e 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 t h e i r 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  Ill  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 s u r v i v o r s . If you have people that are s e l f - r e l i a n t , and through t r a i n i n g or necessity become s e l f - r e l i a n t in more ways than p h y s i c a l l y , emotionally, perhaps, that they can get along well on t h e i r own—what i f you didn't have the same inner resources? What i f you were t o t a l l y dependent on your partner, as l o t s of people are? T o t a l l y dependent emotionally. What i f t h i s awful trauma h i t you at t h i s time?  M.  I learned that I could l i v e on my own, with my own company. I'd always shared with somebody. F i r s t of a l l for f i n a n c i a l reasons, and also because I didn't l i k e 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 l o t more successful at work, I was a l o t more confident in myself, I was happier. I learned that the most important person i n your l i f e i s you. You are responsible for your own happiness. You can't depend on other people for i t .  33.  Developing more caring and s a t i s f y i n g r e l a t i o n s h i p s S i g n i f i c a n t r e l a t i o n s h i p s are deepened, marriage i s 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 s i c k , 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 l o t of ways.  F.  I think there i s one other factor which i s very important: my wife i s very t o l e r a n t of me. Very supportive. And I think i f you have that buttressing at a time l i k e that--I don't know i f you're a c t u a l l y 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 f o r t y years. And we got married i n 1953. We've been married now 36 years. And we're so lucky in that way, we're pretty s t a b l e . I've never had a family problem. I t ' s an oasis for me to come home to. I think your r e l a t i o n s h i p s 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 l i v e and not just give up. I, personally, f e e l that the strongest motivator i s to have a warm, close r e l a t i o n s h i p , to know that someone cares. My friendships have a l l been deepened. I r e a l l y value the f r i e n d s h i p perhaps more because they always stood by me, whatever kind of problems I had. They're not just surface f r i e n d s h i p s . They have meant more to me than anything.  34.  Helping  others  in need  You develop greater compassion for people and the desire to  provide  service. D.  I think one of the biggest joys i n l i f e i s going to the " L i v i n g with Cancer" meeting and j o l l y i n g everybody up. I r e a l l y get a kick out of doing that.  E.  I guess that would be the best lesson: that you give of yourself more and not t r y to take for y o u r s e l f .  F.  When I was quite s i c k i n the ward our f l o o r didn't have a microwave to b o i l 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 d o l l a r s and l o t s wanted to give me f i v e d o l l a r s . I didn't want f i v e d o l l a r s or f i f t y d o l l a r s . I wanted f i f t y cents! I could say, "This i s from Johnson Terminal." And I c o l l e c t e d f i v e hundred d o l l a r s . This gave me a tremendous sense of purpose.  M.  There i s another volunteer a c t i v i t y which keeps me busy and makes me f e e l that I am f i n a l l y c o n t r i b u t i n g to t h i s 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 r e a l l y appreciating i t , you're helping them or they're getting something out of i t , you want to do more for them. [Interview]  35.  I n s p i r i n g others You  i d e n t i f y yourself as a survivor and an example not only to  others with cancer, but to everyone who story of hope and success.  could benefit from hearing a  You have a strong sense of mission, and  you  113  become s o c i 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 l i v e s 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 t h i s would save a l o t 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 i s 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 t a l k i n g to each other and smiling because I had been there before them! Learning a l l the d i f f e r e n t things that w i l l help people makes the biggest d i f f e r e n c e in the world! To t r y and make them r e a l i z e that cancer i s n ' 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 r e f e r others to me, because I'd say, " I f you know of somebody in the same circumstances that I'm i n , 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 s t o r y and gain something from i t . I think i t ' s v i t a l l y important that not just cancer s u f f e r e r s be t o l d about my story. Now i t ' s one in four Canadians who w i l l have cancer sometime i n t h e i r l i v e s . So i t ' s just as important that every member of the population knows that there i s l i f e a f t e r cancer, knows that there i s help. I get up in churches and I say t h i s . I get up in s o c i a l groups and I say this. "I'm a s u r v i v o r ! " And that's very important. I think t a l k i n g to others i s 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 h a v e — r e a l i z e the problems that they've got and what they're going through and t r y to help. They're r e a l l y appreciative when they talk to you. And I have been f e e l i n g e s p e c i a l l y since I got on to t h i s l a s t section of the book, that maybe this i s - - t h i s i s the sort of thing that I'm here to do. And i f indeed my story does become an i n s p i r a t i o n or a help to even one other person perhaps that might be the elusive reason why, against so many odds, God has kept me a l i v e .  36.  Enlarging your sense of community You experience a greater f e e l i n g of connectedness  and to humanity.  to other people  There i s the sense of belonging in the world, and  114  that the world is an extension of yourself. concern for the environment  You have an increased  and the welfare of others.  D.  I never used to rooting for the thing under the gone on there!  be interested much in p o l i t i c s , but r i g h t now I'm Indians. Mulroney t r y i n g to s l i p t h i s Meech Lake table. And Russia, look at the changes that have Things are happening i n t h i s world r i g h t now!  E.  Before i t was more—family. Now i t ' s the world. This i s the d i f f e r e n c e . We're w i l l i n g 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 r e l a t i o n s . 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 t h i s uniqueness. become more  You  non-conforming.  D.  And now, at t h i s r i p e old age, I don't care whether anybody l i k e s me or not! You see, i t doesn't matter!  E.  The main lesson that you learn i s that l i f e i s important. Not money, not homes. You are yourself instead of t r y i n g to keep up with the Jones'.  F.  What I say may be t o t a l garbage for anybody else but me. Out of the f i v e b i l l i o n people on t h i s earth, I am unique, and what I say could be unique as w e l l .  M.  I used to do things and say things and behave a l o t 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 l i k e me a l l the time. And then I r e a l i z e d that i t was quite okay not to l i k e somebody and for somebody not to l i k e me.  38.  Having a richer and more meaningful  life  115  L i f e i s experienced as f u l l ,  r i c h and meaningful.  You discover  your dream and l i v e 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 d e l i v e r e d 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 l i v e d to 130, you're s t i l l going to miss something, so i t r e a l l y doesn't make a l l that much d i f f e r e n c e . 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 l i v e 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 l i k e t r a v e l l i n g . Now we never stay at home anymore! We're more involved i n pleasure than i n getting ahead. The almighty d o l l a r don't mean that much to either of us.  F.  Regardless of my [health] r e s t r i c t i o n s now, I do more. I appreciate the greater f u l l n e s s 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 l e a s t . I can l i s t e n to s i x 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 p o s s i b l e . In f a c t , do more because you have cancer than you would have done without i t . Hopefully y o u ' l l 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 d i f f e r e n t a t t i t u d e — a case of do i t now! I should l i v e every year as much as I could, just i n 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 l i k e to do with the rest of your l i f e , however much of i t you've got l e f t ? What would you r e a l l y , r e a l l y want to do, and why haven't you done i t ? And what's stopping you doing i t ? And then go ahead and do i t .  Phenomenological  Description  The process of surviving a l i f e - t h r e a t e n i n g disease and being transformed by i t i s a s p i r i t u a l journey set i n motion by the threat of death.  116  The f i r s t stage of t h i s journey i s the c a l l to change. The diagnosis of terminal or l i f e - t h r e a t e n i n g 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 t h e i r fate can be d i f f e r e n t .  The threat of death i s the c a l l to begin l i v i n g l i f e It i s a c a l l to begin i n v e s t i g a t i n g  in a different  way.  life.  The i n v e s t i g a t i o n begins by taking an a c t i v e and f e a r l e s s stance, much l i k e a warrior going to b a t t l e . t h e i r own s u r v i v a l and healing:  Survivors have a conviction about  they believe they are going to l i v e ,  and expect that they are going to l i v e despite what they are t o l d , 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 l i v e i s reinforced.  This d e c i s i o n to l i v e i s a d i s t i n c t turning point.  Often  t h i s turning point i s the experience of what i s valued in l i f e — a  loving  huabund and caring c h i l d r e n , the beauty i n nature, the desire to see more of the world and experience more of l i f e .  There i s the sense of  being at the junction of L i f e and Death, and deciding to go on and choose l i f e .  For some people there i s a c r u c i a l i n t e r a c t i o n with  another that helps activate the w i l l to l i v e . a cancer survivor who  This other person may  can show that s u r v i v a l i s possible, and that i t  requires tremendous w i l l and f o r t i t u d e and tenacity. Survivors begin to take r e s p o n s i b i l i t y for their own healing process.  They seek out professional information and d i r e c t i o n about  their condition that w i l l arm them with the facts that they need to  be  117  f i g h t the b a t t l e .  For someone with terminal cancer, the s i t u a t i o n i s  that there are no cures and few a l t e r n a t i v e s offered by t r a d i t i o n a l medicine.  With such limited advice, d i r e c t i o n and hope from experts  they r e a l i z e that t h e i r fate i s i n t h e i r 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  life.  The habitual ways of seeing and r e l a t i n g 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 c l e a r l y 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 r i s k s because there are no promises and no guarantees.  The old ways of s o l v i n g problems are not viable solutions  any longer.  They are now  i n unknown t e r r i t o r y .  There are no maps.  Survivors need to break away from routine and become more i n t u i t i v e and spontaneous i n order to make important d e c i s i o n s . "What treatment w i l l be most helpful?  They ask  themselves,  What i s the most important thing  for me to be doing r i g h t now?" An a t t i t u d e of hope and optimism accompanies the desire to l i v e . Survivors begin by a n t i c i p a t i n g the best possible outcome of treatment. Soon a l l d i f f i c u l t s i t u a t i o n s are met with a p o s i t i v e a t t i t u d e .  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 a t t i t u d e of c u r i o u s i t y i s c u l t i v a t e d .  In l i v i n g with a l i f e -  threatening i l l n e s s , people are much more aware that the future i s unknown. about  Instead of dreading that future, they remain open and excited  i t , as i f l i f e was an adventure.  Their own l i v e s 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 t h e i r fears: of  loss, fear of pain and s u f f e r i n g , fear of death.  fear  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 l i v e with more fear throughout  life,  and need more f o r t i t u d e and stronger inner resources i n order to survive. Yet there i s 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 . for miracles.  They expect the unexpected,  and allow  In l i v i n g day to day with cancer i t i s h e l p f u l to learn  ways to place i t i n the background rather than give i t a c e n t r a l focus. Survivors learn how to distance t h e i r problems, and r e d i r e c t t h e i r thoughts away from t h e i r own d i f f i c u l t i e s . having cancer.  What becomes c e n t r a l i n l i f e  This softens the impact of i s their aliveness, and not  the p o s s i b i l i t y of dying. One woman finds i t i s so i n c r e d i b l e that she has l i v e d 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 b e l i e v i n g in her death; to remain o p t i m i s t i c i s to deny t h i s r e a l i t y at times.  She i s aware that t h i s i s  a coping strategy, and that she i s d i s t o r t i n g 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 experience i t .  Other cancer survivors never deny the fact or  consequences of their i l l n e s s and, by mukiny p o s i t i v e comparisons are.  f e e l and deeply  instead, may minimize t h e i r concerns  with others who  are worse o f f than they  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 i s perceived, i s 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 e s p e c i a l l y in coping with  the problems caused by surgery and cancer treatment.  These s i d e - e f f e c t s  of treatment assault the body so harshly that i t i s necessary to change the old way of i d e n t i f y i n g with the body.  Survivors develop a good  sense of humour—sometimes an outrageous sense of humour—look for amusement even i n p a i n f u l s i t u a t i o n s , and learn to laugh at themselves. While they take t h e i r own  l i v e s more s e r i o u s l y , at the same time they  l e u m Lo L a k e l i f e ' s d i f f i c u l t i e s less s e r i o u s l y .  Being able to laugh  brings joy and d i f f u s e s the s u f f e r i n g . In the d a i l y 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 i n s p i r a t i o n .  At times these are  120  cancer patients who  are a model of courage and determination, and  show that s u r v i v a l i s indeed p o s s i b l e .  At other times, models are fellow  patients who don't have cancer, or people encountered who  in group therapy  s u f f e r even more t e r r i b l e s i t u a t i o n s and l i v e through  remarkable way.  Those i n d i v i d u a l s who  who  were diagnosed  i t in a  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 i n a s i m i l a r s i t u a t i o n , and a c t i v e l y promote the importance of s e l f - h e l p support groups.  now  Yet they  acknowledge that no amount of encouragement, support or i n s p i r a t i o n from others can replace t h e i r own desire and expectation of l i v i n g . Survivors recognize the importance of support from others during t h i s time of recovery.  They i d e n t i f y the love and support of family and  friendu during t h i s period of c r i s i s and t r a n s i t i o n as e s s e n t i a l to their survival.  They become w i l l i n g to share their a n x i e t i e s about  having cancer, and may  reach out to cancer s e l f - h e l p groups and  outside the family c i r c l e .  people  As they begin to i d e n t i f y with other  s u r v i v o r s , there i s the sense of being less alienated from humanity. There i s a tremendous f e e l i n g of support and closeness that a r i s e s in bondirnj with others who  are going through s i m i l a r struggles.  Survivors look for opportunities to have meaningful with others.  conversations  It i s as i f the l i t t l e things i n l i f e don't matter as  much, and what is important  i s given more a t t e n t i o n .  They chat and  gossip l e s s , and talk more about the things that they are interested, concerned  and passionate about.  Survivors are w i l l i n g to talk about  121  t h e i r i l l n e s s and how their l i v e s have become richer and more meaningful as a r e s u l t of having cancer. is t r i v i a l In  What i s e s s e n t i a l i n l i f e emerges; what  fades into the background.  order to discover what i s e s s e n t i a l i n l i f e survivors become  motivated to know themselves better.  They begin to investigate their  character and develop insight into t h e i r behaviour.  They t r y to  understand the choices that they have made i n l i f e , and how these decisions have contributed to t h e i r happiness or dis-ease.  Many  survivors begin a l i f e review, and r e f l e c t on what i s important in l i f e . A personal journal may be used to learn about oneself through self-reflection.  For some, t h i s i n v e s t i g a t i o n begins by reviewing the  stresses that may have predisposed them to contracting cancer.  They  learn from t h e i r mistakes, for example, the ways in which they have handled stress poorly before.  Some publish t h e i r r e f l e c t i o n s , or write  a book to help others with cancer, and some go on to further t h e i r education and personal growth late i n l i f e . Survivors also learn how to handle stress much more e f f e c t i v e l y . It  i s as i f the threat of dying becomes an opportunity for change and  growth.  They become more active agents i n t h e i r own l i v e s , moving  toward pleasurable involvement and avoiding unhealthy c o n f l i c t . people learn that they need to disengage themselves  Some  from confrontation;  others learn that they need to stand up more f o r themselves, even when t h i s means creating confrontation.  One man noticed that as he stepped  back from c o n f l i c t he was able to encourage  h i s wife to take a more  dominant role in their r e l a t i o n s h i p , and this had a powerful and  122  b e n e f i c i a l e f f e c t upon their marriage. Survivors look for creative solutions to problems. and  receptive to new  wouldn't have been  p o s s i b i l i t i e s and see opportunities that previously considered.  There i s a growing conviction that l i f e goals  for the future becomes a way  expecting  They are open  i s worth l i v i n g .  of expressing  to l i v e and having things to l i v e f o r .  Setting  the conviction of It becomes important  for survivors to have something ahead to which to look forward and buoy up t h e i r enthusiasm for l i v i n g . l i f e and  to  These goals help give meaning to  to t h e i r s u f f e r i n g , but happiness does not depend upon  achieving these goals.  They learn to l i v e with t h i s paradox:  they set  goals and a n t i c i p a t e a future, yet also accept that these goals never be r e a l i z e d . these goals  Goals become a guide to l i v i n g ; the achievement of  is not a measure of  success.  In seeing t h e i r goal, yet not being attached to compensate.  may  to i t , survivors learn  They find out that they do not always get what they  think they deserve or what they d e s i r e , and contentment in what i s present.  they look instead for  They see c l e a r l y that  everything  changes and that change i s unavoidable, and yet t h i s awareness does not create  inertia.  Instead,  i t breeds an a t t i t u d e of l e t t i n g go, of not  being locked into preconceptions of the way should be.  things are or the way  Survivors learn that having expectations  things  and s e t t i n g goals  i s more s a t i s f y i n g than r e l y i n g on a predetermined strategy. In learning to l e t go, survivors become much more adaptable and accepting.  Their i l l n e s s may  necessitate a change i n career, e a r l y  123  retirement, and a change in family r o l e s .  For many men the i n a b i l i t y to  earn a l i v i n g and contribute f i n a n c i a l l y to the welfare of t h e i r families was the most d i f f i c u l t thing that they had to accept during the course of t h e i r  illness.  The t h i r d stage of t h i s journey of personal transformation i s that of  r e b i r t h , when one i s born into a new l i f e .  l i f e means the death of the o l d l i f e . come to accept t h e i r own death.  To be born into a new  As the old l i f e dies, survivors  There i s the f e e l i n g that they are  ready to d i e 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 i s no longer the enemy.  Although  survivors s t i l l don't believe that they are going to die at t h i s 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 . way they learn to l i v e with another paradox: and yet l i v i n g l i f e .  the journey i s appropriate timing. by t h e i r i l l n e s s .  learning to accept death  They also learn about timing—knowing  refuse death and when to accept i t .  In t h i s  when to  To refuse death at the beginning of I t allows people to be transformed  Yet, refusing death l a t e r i n the journey would impede  the transformation process.  In accepting death survivors become  peaceful, more accepting of l i f e , and more able to l e t go of regrets about opportunities not taken. Another seeming paradox a r i s e s : enjoy l i f e  fully.  i n accepting death, survivors  With the conviction that l i f e  look f o r happiness and joy i n s i t u a t i o n s .  i s to be enjoyed, they  This may require a r a d i c a l  departure from C h r i s t i a n values and the Protestant work e t h i c .  Some  124  survivors f e e l that they have always enjoyed l i f e , and that having cancer has not changed t h i s except by making them aware of how much they love it!  Others f e e l that the i l l n e s s d e f i n i t e l y impelled them toward more  enjoyment of l i f e . Survivors begin to examine t h e i r reasons f o r l i v i n g . matter whether i t i s r e l i g i o u s lives.  f a i t h or r a t i o n a l i s m that guides t h e i r  What matters i s that these b e l i e f s are c r y s t a l l i z e d into a  philosophy It  I t does not  that gives d i r e c t i o n and meaning to l i f e .  i s also a time of questioning  priorities.  the o l d values and s e t t i n g new  With the poignant awareness that l i f e  survivors recognize  i s short and valuable,  that i t i s now time to do what i s important.  Some  think, i n retrospect, that perhaps any c r i s i s or change i n l i f e can provoke a reassessment of v a l u e s — r e t i r e m e n t , d i s a b i l i t y , losing a partner or a c h i l d . often quite d i f f e r e n t  serious i l l n e s s ,  What becomes important i s  from what was valued  before.  routines and b e l i e f s are examined and discarded medniiKj and p l e a s u r e .  Old habits and  i f they no longer  bring  Survivors begin to see how much of t h e i r  behaviour i s determined by conditioning, and also see how binding and unrewarding these o l d ways may be.  Middle-aged women r e a l i z e that  housework and family duties are not so v i t a l to their well-being.  Men  of the same age r e a l i z e that f i n a n c i a l success i s not so c r u c i a l .  If  money was important before, they r e a l i z e that they can't them!  One'u i ; e l f - i d e n t i t y i s changing.  take i t with  Survivors are no longer  by t h e i r primary role of housewife or breadwinner.  defined  They begin to  discover what i s true for themselves, and that i t i s v i t a l l y  important  125  to create a meaningful l i f e that i s not dependent on approval or recognition from others. what i s e s s e n t i a l i n l i f e .  This i s the search for e s s e n c e — a search for P r i o r i t i e s are changed and acted upon.  Survivors break away more from routine, convention and gender r o l e s . They ask, "What i s 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 c r a f t s rather than washing the  f l o o r s ; t r a v e l l i n g to see old friends rather than staying at home; vacationing more with family or spending time abroad; spending money and g i v i n g i t away rather than saving i t ; volunteering t h e i r time for worthwhile projects rather than working at what may be s t r e s s f u l and unrewarding. that l i f e  They become more spontaneous, and discover i n the process  i s more enjoyable t h i s way!  Survivors determine a clear purpose i n l i v i n g .  The threat of  terminal cancer has brought into sharp focus the question, "What i s there to l i v e 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 l a s t i n g mark on the world, perhaps through c h i l d r e n and grand-children. Yet the sense of meaning in l i f e struggle of l i v i n g with cancer.  i s constantly assaulted by the  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 lives 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. i l l n e s s has been a great teacher:  The  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 f e 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. time and be thankful for i t .  They learn to take one day at a  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. experience of l i f e is richer and f u l l e r . f e l t more deeply.  It is as i f the whole Both pain and pleasure are  Some feel that age has taught them to express their  feelings better, while others f e l t forced by their i l l n e s s to learn to express emotions.  They learned how v i t a l i t was to release c o n f l i c t and  emotional tension, p a r t i c u l a r l y 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 s e l f was confirmed by their  illness.  For others, a whole new sense of s e l f emerged.  Latent  q u a l i t i e s blossomed; they became more of who they e s s e n t i a l l y were. Some i n d i v i d u a l s needed to stop being complacent.  They recognized that  i t was p e r m i s s i b l e — a n d even f e l t h e a l t h y — t o complain more and to express what seemed wrong or what they d i s l i k e d in a s i t u a t i o n .  One man  noticed the way his wife learned to stand up for herself i n face of his assertiveness, so that the changes brought about by h i s i l l n e s s extended beyond himself. Survivors express t h e i r independence. needs and i n t e r e s t s , instead of conforming  They i d e n t i f y t h e i r own to the expectations of others.  They are mure s e l f - r e l i a n t and can express t h e i r independence within relationships.  This i s e s p e c i a l l y true of women within t h e i r  marriages.  This expression of independence indicates t h e i r sense of confidence and self-worth. And yet, while more independent, survivors recognize t h e i r dependence and interdependence.  One man for whom s e l f - r e l i a n c e was  always an important v i r t u e changed remarkably  i n becoming more tolerant  of others, and more w i l l i n g to accept his dependence upon them. S i g n i f i c a n t r e l a t i o n s h i p s are deepened.  Marriage and friendships are  strengthened and become more supportive.  There i s a stronger sense of  teamwork i n marriage, as a couple bonds together to share d i f f i c u l t and p a i n f u l times.  Knowing that someone important  you and supports you i s c r u c i a l to s u r v i v a l .  i s there who believes in While standing alone, you  are buoyed up by the presence of someone standing alongside you.  128  In l i v i n g with this i l l n e s s , the seeds of compassion  are sown.  Survivors become active i n helping others and contributing to t h e i r welfare, and gradually orient t h e i r l i v e s toward s e r v i c e .  It gives them  the f e e l i n g that they are contributing to the world i n a meaningful  way.  Often t h i s involves volunteering t h e i r time and looking for opportunities to provide a needed s e r v i c e . something tolerate.  Some choose to change t h e i r work to  they love rather than continue in a vocation that they merely This choice i s not dependent on monetary  On t h i s path of healing survivors acquire a new being a teacher. with others.  compensation. i d e n t i t y — t h a t of  What they have learned from the i l l n e s s i s now shared  The mission of g i v i n g help and i n s p i r a t i o n to other cancer  patients, and showing that cancer can be beaten, provides a strong sense of d i r e c t i o n .  In becoming s o 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 l i v e s of many other people. This gives greater meaning to t h e i r own  illness.  Survivors become  spokespeople for important issues, e s p e c i a l l y the need for people to create more meaningful  lives.  Survivors experience a geater sense of community than before. There i s a strong sense of connectedness with other cancer patients and a bonding with those who  have surmounted s i m i l a r 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 t h e i r own bloodlines.  The world f e e l s l i k e an extension of  themselves; they have more concern about the environment, i n j u s t i c e and c r u e l t y and s u f f e r i n g .  about human  Instead of being isolated and  alienated by this l i f e - t h r e a t e n i n g 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. to themselves instead of to others  They look  for the source of happiness.  They  accept themselves as they are, with a l l of t h e i r tensions and c o n f l i c t s and  polarities.  They learn to l i v e with c o n t r a d i c t i o n s :  what they want, yet not being attached yet s e t t i n g goals for the future; being others; duueiLive  and opinionated,  f i g h t i n g for  to the r e s u l t s ; l i v i n g f o r today, independent, yet dependent upon  yet able to l i s t e n and understand  others' needs; s e l f - c e n t r e d , yet more g i v i n g to others;  pleasure-  oriented, yet service-oriented as w e l l ; s e l f - r e l i a n t , yet with a f e e l i n g of connection  to a larger community; appreciating l i f e f u l l y , yet not  b e l i e v i n g i n l i f e at any cost.  I t i s as i f the path of healing i s also  a journey of i n d i v i d u a t i o n — o f becoming whole. F i n a l l y , i n s u r v i v i n g terminal cancer and being transformed by i t , life  i s celebrated as a f u l l and r i c h and meaningful experience.  Survivors become more active and involved, and have more sustaining interests.  They learn to l i v e 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 The story of transformation begins with the threat of death. conscious desire to l i v e . are going to l i v e .  Structure  in surviving a life-threatening i l l n e s s It i s t h i s c r i s i s which awakens the  Survivors must believe and expect that they  This conviction reinforces their w i l l to l i v e .  become aware of what i t i s that makes l i f e worthwhile:  They  love, beauty i n  130  the world, and a desire to experience more of l i f e .  Other survivors  may  f o r t i f y t h e i r w i l l to l i v e by showing that i t i s possible to survive this i l l n e s s .  In looking to experts, these people r e a l i z e that t h e i r  fate i s in their own hands, as there i s only limited help, d i r e c t i o n and medical hope, and no guarantee  for s u r v i v a l .  They must now  look within  and take r e s p o n s i b i l i t y for t h e i r l i f e and for t h e i r own healing. must f i g h t their own  battle.  Survivors take up the c a l l i n the s p i r i t of a warrior. develop courage and determination to confront t h e i r fears. unknown with c u r i o u s i t y and a willingness to take r i s k s . met with hope and optimism,  They They face the  Challenges are  problems are redefined in a p o s i t i v e  and d i f f i c u l t i e s are distanced and minimized. of  They  light,  C u l t i v a t i n g a good sense  humour helps in taking t h e i r struggles less s e r i o u s l y . Survivors discover others who  an i n s p i r i n g way.  have overcome t h e i r d i f f i c u l t i e s in  These people are models of courage and f o r t i t u d e , and  show how to l i v e day to day with a l i f e - t h r e a t e n i n g i l l n e s s .  Survivors  look to friends and family for support, and f e e l 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 t h e i r healing.  As they review their l i v e s and  reflect  on decisions and mistakes they have made, they begin to discover what i s e s s e n t i a l in l i f e .  They learn how  to handle stress more e f f e c t i v e l y ,  and find creative solutions to problems.  Seeking out opportunities to  have meaningful conversations with people, they talk openly about i l l n e s s and i t s e f f e c t upon t h e i r l i v e s .  their  Concrete goals are set as a way of  131  expressing what i s important in l i f e , and d e c l a r i n g their expectation of living.  While these goals are a guide to l i v i n g , at the same time they  learn to l e t go of t h e i r attachment to the r e s u l t .  They learn to  compensate, to become more adaptable, and to accept t h e i r circumstances and t h e i r  fate.  As survivors examine the b e l i e f s underlying t h e i r w i l l to l i v e , they become cognizant of the philosophy that guides their l i v e s .  A  clear purpose i n l i v i n g i s i d e n t i f i e d ; i t may consist of a creative  life  project, providing service to others, experiencing and enjoying l i f e to the f u l l e s t , or transcending m o r t a l i t y by being remembered i n some v i t a l way.  As t h i s purpose i s f u l f i l l e d , t h e i r i l l n e s s and t h e i r l i v e s 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  i s short and valuable, survivors  begin to do now what they r e a l l y want to do. that l i f e  They have the conviction  i s to be enjoyed and l i v e d , f u l l y , day by day.  At the same  time survivors come to accept t h e i r own deaths, and accept that and s u f f e r i n g are no longer the enemy.  illness  They look to cancer as a  teacher; i t has taught them how to become more a l i v e .  Their i l l n e s s 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  a s s e r t i v e , 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 s a t i s f y i n g r e l a t i o n s h i p s , f e e l a greater  132  sense of belonging and community, and a c t i v e l y contribute to the welfare of olheiu.  Accepting and valuing these paradoxes furthers the journey  of healing and c a r r i e s people along the path of individuation and wholeness. Survivors are endowed with the mission of sharing what they have learned from t h e i r i l l n e s s .  They become teachers and models to others  for discovering what i s e s s e n t i a l . more passionate and meaningful  They inspire others to lead r i c h e r ,  lives.  In teaching important  issues, cancer survivors have become the shamans of our time.  collective  133  CHAPTER 5  Discussion  Limitations of the Study This study has depicted a story of transformation shared by four i n d i v i d u a l s who survived l i f e - t h r e a t e n i n g cancer. pattern of s p i r i t u a l growth through awareness.  The story revealed a  This awareness developed  as people accepted t h e i r i l l n e s s and learned from i t . The purpose of t h i s study was to understand the process of transformation that can take place in survivors of terminal cancer.  The  p a r t i c i p a n t s i n the study were considered to be the " c u l t u r a l representatives" of the population which i s transformed during recovery from cancer ( C l a s p e l l , 1984, p.79).  Their experience may well reveal  the universal meaning of transformation through l i f e - t h r e a t e n i n g i l l n e s s , and perhaps other l i f e - t h r e a t e n i n g c r i s e s . I do not claim that t h i s pattern w i l l be observed in a l l people survive terminal cancer.  who  As the interview with Paul indicated, people  must have the determination and the willingness to learn from t h e i r i l l n e s s i n order to be transformed by i t .  Recovering from cancer does  not n e c e s s a r i l y bring about transformation. Four p a r t i c i p a n t s confirmed that t h i s pattern of growth and healing was v a l i d for them, suggested that i t was true for other cancer survivors, and that i t may be an archetypal d e s c r i p t i o n of transformation  134  through i l l n e s s .  The pattern discovered in t h i s study d i d prove to be  remarkably s i m i l a r to c r o s s - c u l t u r a l accounts of transformation (Campbell, 1968;  Durkheim, 1980; Gennep, 1961; Goldstein & K o r n f i e l d ,  1987; Grof & Grof, 1980; Grof & Halifax, 1977; Williams, 1981).  A  dialogue with further research w i l l determine to what extent these r e s u l t s can be generalized.  Theoretical Implications Understanding the meaning of the transformation process in cancer patients has broad t h e o r e t i c a l implications.  Other models have only  p a r t i a l l y addressed t h i s phenomenon.- They are limited in scope, either by t h e i r lack of empirical v a l i d a t i o n , or by omitting a d e s c r i p t i o n of the process of change as i t takes place in people recovering from life-threatening illness.  This study expands our knowledge beyond that  found in other models. The contributions of psychobiology and behavioural medicine were supported by t h i s study.  Mind-body research has emphasized  importance of a p o s i t i v e b e l i e f system i n one's health. i t appeared change.  who  From t h i s study  that a p o s i t i v e b e l i e f system was the s t a r t i n g point for  The threat of death from advanced  b e l i e f system. live?  the  A person asks, "Do  cancer challenges one's  I want to l i v e ?  What makes i t worthwhile l i v i n g ? "  Why  do I want to  The survivors i n t h i s study  were transformed by t h e i r i l l n e s s a l l had a strong w i l l to l i v e , an  unwavering  b e l i e f that they would l i v e and that t h e i r l i f e was worth  l i v i n g (Themes 2 and 3).  They were o p t i m i s t i c , 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 i l l n e s s to transform our l i v e s , show us a purpose  for l i v i n g , and  challenge us to grow into whole and individuated persons. confirmed these f i n d i n g s .  of allowing  This study  Co-researchers took r e s p o n s i b i l i t y for t h e i r  healing, becoming a c t i v e p a r t i c i p a n t s in t h e i r recovery (Theme 4). They openly confronted t h e i r fears, reached out to others, shared t h e i r concerns, and accepted support (Themes 9, 13, 14 and 15). motivated to understand themselves  They became  i n a deeper way than before, and  began r e f l e c t i n g on the meaning of t h e i r l i v e s (Themes 16 and 24).  As  t h e i r purpose and path were revealed, these survivors changed old a t t i t u d e s , values and p r i o r i t i e s that were no longer meaningful 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 29 and 38).  (Themes  to celebrate l i f e  (Themes 22,  28,  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 t h e i r  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 t r 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; s e l f - c e n t r e d 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 i n the battleground of s u f f e r i n g and growth. The s p i r i t u a l model emphasized the p o t e n t i a l of struggle and s u f f e r i n g 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 c e n t r a l to the process of transformation as documented i n t h i s study.  The journey taken by cancer survivors who are  transformed by t h e i r i l l n e s s r e f l e c t s , i n d e t a i l , the archetypal journeys described in r e l i g i o n , mythology, anthropology, sociology and medicine. This suggests that the changes that take place i n the l i f e of a person who survives terminal cancer take that person on a journey recognized by many c u l t u i e u .  It aeems to be a journey embedded deep within the human  psyche. In documenting the experience of cancer survivors, t h i s study has supported the construct of a journey leading to integration.  People  have a need f o r growth; our pain, i l l n e s s , s u f f e r i n g and lack of d i r e c t i o n impel us to change and become whole.  This change i s a great  struggle, since i t involves a death of old ways and old i d e n t i t y .  If  t h i s kind of change i s allowed and encouraged, i t heals us, and takes us to a new l e v e l 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 q u a l i t i e s of love and unity consciousness are e s s e n t i a l to healing and transformation. This study lends support to t h i s hypothesis.  Survivors developed closer  and more s a t i s f y i n g r e l a t i o n s h i p s , and i d e n t i f i e d support and love as e s s e n t i a l 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 r e s p o n s i b i l i t y for the welfare of others.  Survivors shared what they had learned by surmounting  i l l n e s s — t h e y taught others the importance  their  of courageously facing t h e i r  fears, not giving in to their d i f f i c u l t i e s , and discovering how to l i v e a meaningful l i f e have not appeared  (Themes 23, 26 to 29, 34, 35 and 38).  While they  to have developed unity consciousness, they have  c e r t a i n l y gained a deep transpersonal awareness. There are few other studies which explicate the c o l l e c t i v e value of illness.  Campbell's  (1984) phenomenological  study of breast cancer  patients does make a limited reference to the s o c i a l aspect of healing. In  women who had mastectomies,  she observed a change that she c a l l s  "awareness of s e l f as part of humanity".  This change i s 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 f e e l i n g that one's story i s more than a personal story.  These r e s u l t s are confirmed and expanded i n t h i s study.  In  addition to experiencing their connection with humanity in a new and powerful way, these survivors are bringing about s o c i a l changes. personal and family r e l a t i o n s h i p s have improved,  Their  the l i v e s of other  cancer patients and t h e i r families have been enriched, and people they have contacted because of their i l l n e s s have been affected in some b e n e f i c i a l way.  Their transformation holds the p o t e n t i a l for bringing  about a c o l l e c t i v e change in consciousness. t h i s way:  One co-researcher stated i t  138  One  in every three people w i l l get cancer sometime in t h e i r  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 knows somebody e l s e ! probably say, "Oh,  everybody  And i f i t got to be one i n two, people would  that's t e r r i b l e ! "  in three was t e r r i b l e .  life.  Just l i k e I thought that one  But a f t e r 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 h a l f !  Some big p o s s i b i l i t i e s here!!  The s u f f e r i n g 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 d a i l y 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 a v a i l a b l e 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 i s a revolutionary one. s p i r i t of love?  Could harmony i n the world be brought about by the  Does l i f e - t h r e a t e n i n g i l l n e s s t r u l y hold t h i s potential?  This study suggests that serious i l l n e s s brings the same teaching as any s p i r i t u a l path. are  In learning to accept our pain and s u f f e r i n g , we  taken on a journey of s p i r i t u a l growth.  is to make us more aware and more whole.  The purpose of t h i s journey  We are more aware that  s u f f e r i n g i s pervasive in human l i f e , and that we need to accept t h i s . We become more aware of the purpose of our l i v e s , and of our connection to  humanity.  We learn how to transform our s u f f e r i n g into the desire to  serve others and to make this world a better place.  139  These teachings from cancer r e f l e c t world r e l i g i o n s .  the same message taught by many  Buddhism i s one example.  at the heart of Buddhism.  Awareness and compassion l i e  Buddhism teaches awareness of what causes our  s u f f e r i n g , and how to end that s u f f e r i n g by l i v i n g a balanced which i s c a l l e d the "Middle Way".  Buddhism teaches awareness of how to  use every opportunity to awaken to our true nature. practice and the way.  serving others.  Daily l i f e  i s the  Certain practices w i l l help develop awareness,  but they are not to be mistaken for the way. love and compassion,  life,  The way i s to l i v e with  to express our caring, to learn s e l f l e s s n e s s by  This i s the essence of Buddhism, and the essence of  what may be learned by cancer survivors.  The teaching i s a s p i r i t u a l  one, and a guiding philosophy for how to l i v e .  P r a c t i c a l Implications This study suggested that the process of recovery from cancer i s a profound journey which can c l a r i f y the meaning of l i f e ,  the r e l a t i o n s h i p  between human beings, and the r e s p o n s i b i l i t y each person has f o r the welfare of others. The process of recovery from a l i f e - t h r e a t e n i n g disease i s much more than a return of physical, emotional and mental well-being. are  These  a l l important to health, but health also connotes wholeness, and  this requires a person to e s t a b l i s h a new s p i r i t u a l  r e l a t i o n s h i p , not  only with h e r s e l f , 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 f o r the support of cancer  140  patients.  Counselling and psychotherapy must no longer seek simply to  r e l i e v e the stress of a l i f e - t h r e a t e n i n g diagnosis.  Distress i s  f u n c t i o n a l ; with d i r e c t i o n , i t can motivate necessary changes. As LeShan (1961) suggested long ago, for support of cancer patients to be e f f e c t i v e , i t must have an e x i s t e n t i a l basis. assistance i n t h e i r search f o r s e l f and for meaning. the i n d i v i d u a l and yet i t i s everyone's  journey.  Many people need I t i s the quest of  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 c h r y s a l i s would be useful here.  If severe i l l n e s s i s  perceived as a c h r y s a l i s , and that c h r y s a l i s l o v i n g l y cared f o r , when conditions are r i p e , the human s p i r i t i s l i b e r a t e d . 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 i n  t h e i r l i v e s , and w i l l need assistance. There i s a lack of s o c i a l support for navigating and growing  from these c r i s e s .  Counselling psychologists  can develop a new model of support based on the experiences of cancer patients l i k e those i n t h i s study. The role of the counsellor with someone who has a l i f e - t h r e a t e n i n g i l l n e s s i s as a consultant/guide i n the shared journey of discovering the c l i e n t ' s e s s e n t i a l being.  The counsellor's best tools are love,  compassion and her own self-awareness.  Siegel (1989) suggests t h i s  requires that therapists l i v e their message: vulnerable, s e l f - f o r g i v i n g and s e l f - l o v i n g . deal with their own pain.  that they be open, humble, I t also requires that they  "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 i d e n t i f i e d as c r u c i a l to the process of recovery and transformation.  A strong w i l l to l i v e , a  p o s i t i v e a t t i t u d e , a warrior's stance, a purpose  in l i f e , a change in  values so that one can l i v e t h i s purpose, an alignment of one's personal i n t e r e s t s 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 a s s i s t people i n changing t h e i r thoughts and a t t i t u d e s , we do not know much about a c t i v a t i n g and r e i n f o r c i n g a person's w i l l to l i v e .  This study suggested that the w i l l to l i v e must  be revealed through one's own experiences and struggles.  People may  be  a s s i s t e d in t h i s 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 i s a need for research to determine what constitutes the w i l l to l i v e .  Clinical  observation and theory suggest that a person  must have the w i l l to l i v e , to surmount a l i f e - t h r e a t e n i n g c r i s i s . well-designed studies a l s o confirm that i t i s s i g n i f i c a n t . do noL  know i f the w i l l to l i v e  It has been suggested  Yet we  Some still  i s , i n f a c t , e s s e n t i a l for healing.  in this study that the journey of healing and  transformation in s u r v i v i n g terminal cancer may  e s t a b l i s h a pattern with  meaning for a l l cancer patients, those with serious, chronic i l l 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 c r i s e s . It might appear from this study that everyone could benefit from the experience of cancer in order to learn what survivors learn. is not the case.  F i r s t , these survivors are a rare breed.  This  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 t h i r d , 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 i k e 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 q u a l i t i e s , 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 long-terra survivors of terminal cancer. who  of  There were f i v e p a r t i c i p a n t s  told the story of their recovery from cancer and how  their l i v e s . for  used to interview  Cochran's (1986) dramaturgical approach provided a model  capturing the meaning of t h i s experience  in story form.  the interviews followed C o l a i z z i ' s (1978) method.  and a d e s c r i p t i o n of the experience was were used in a d d i t i o n to interviews.  written.  analyzed  in the same way as the interviews.  formulated,  Other sources of data  An autobiography  a r t i c l e s were c o l l e c t e d from two p a r t i c i p a n t s .  Analysis  Significant  statements were extracted from the protocols, themes were  was  i t changed  and a s e r i e s of  This written material The experience  of the  researcher also served as data, and was analyzed through r e f l e c t i v e d e s c r i p t i v e methods. descriptions and to  Conducting  interviews, s o l i c i t i n g written  including the researcher's experience allowed the data  be more broadly supported.  by the p a r t i c i p a n t s , who  The r e s u l t s of the study were v a l i d a t e d  confirmed  accurately r e f l e c t e d t h e i r  that the d e s c r i p t i o n of transformation  experience.  Psychological transformation i n survivors of terminal cancer s p i r i t u a l journey.  is a  In allowing a l i f e - t h r e a t e n i n g disease to become an  opportunity for personal awareness and growth, people can t h e i r i l l n e s s into a s p i r i t u a l teaching.  transform  Serious i l l n e s s can  people about the meaning of l i f e , and give t h e i r own direction.  and  teach  l i v e s purpose and  Through t h i s a f f i r m a t i o n of l i f e , and by following their  purpose and p a i n , healing can occur.  This healing not only moves people  toward wholeness, but i t holds the p o t e n t i a l for transforming  and  h e a l i n g the problems of o t h e r s .  Cancer s u r v i v o r s t r a n s f o r m e d by the  i l l n e s s might become t h e new w a r r i o r s and shamans of our t i m e .  145  REFERENCES  Achterberg, J . , Matthews-Simonton, S., & Simonton, 0. C. (1977). Psychology of the exceptional cancer patient: A d e s c r i p t i o n of patients who o u t l i v e predicted l i f e expectancies. Psychotherapy: Theory. Research and P r a c t i c e , 14(4), 416-422. Achterberg, J . , Simonton, 0. C , & Matthews-Simonton, S. (Eds.). (1976). Stress, psychological factors and cancer. Dallas: New Medicine Press. American Cancer Society. New York: Author.  (1974).  75 Cancer Facts and Figures.  Blumberg, E. M. (1954). Results of a psychological t e s t i n g of cancer p a t i e n t s . In J . A. Gengerelli & F. J . Kirkner (Eds.), Psychological variables i n human cancer (pp. 30-61). Berkeley: U n i v e r s i t y of C a l i f o r n i a Press. Broadfoot, B. (1973). Ten l o s t years 1929-1939: Memories of Canadians who survived the depression. Toronto: Doubleday. Burke, K. (1965). Permanence and change: An anatomy of purpose. New York: Bobbs-Merrill. Burke, K. (1969). A grammar of motives. C a l i f o r n i a Press.  Berkeley: U n i v e r s i t y of  Campbell, J . (1968). The hero with a thousand faces. Princeton U n i v e r s i t y Press.  Princeton, NJ:  Campbell, S. H. (1984). The meaning of the breast cancer mastectomy experience. Unpublished master's t h e s i s , U n i v e r i s t y of B r i t i s h Columbia, Vancouver. Canadian Press. (1990, June 18). New cancer odds put l - i n - 3 , S t a t i s t i c s Canada warns. The Vancouver Sun, p. A l . Carlson, R., & Shield, B. J . P. Tarcher.  (1989).  Healers on healing.  Los Angeles:  C a s s i l e t h , B. R., Lusk, E. J . , M i l l e r , D. S., Brown, L. L., & M i l l e r , C. (1985). Psychological correlates of s u r v i v a l in advanced malignant disease? New England Journal of Medicine, 312(24), 1551-1555.  146  C l a s p e l l , E. L. (1984). An existential-phenomenological approach to understanding the meaning of g r i e f . Unpublished doctoral d i s s e r t a t i o n , U n i v e r s i t y of B r i t i s h Columbia, Vancouver. Cochran, L. (1985). P o s i t i o n and nature of personhood: An approach to the understanding of persons. Westport, CT: Greenwood Press. Cochran, L. (1986). P o r t r a i t and story: Dramaturgical approaches to the study of persons. Westport, CT: Greenwood Press. Cochran, L., & C l a s p e l l , E. (1987). The meaning of g r i e f : A dramaturgical approch to understanding emotion. Westport, CT: Greenwood Press. Cohen, J . , Cullen, J . W., & Martin, L. R. (Eds.). (1982). Psychosocial aspects of cancer. New York: Raven Press. C o l a i z z i , P. F. (1978). Learning and existence. In R. S. V a l l e & M. King (Eds.), Existential-phenomenological a l t e r n a t i v e s for psychology (pp. 119-135). New York: Oxford U n i v e r s i t y Press. C o l a i z z i , P. F. (1978). Psychological research as the phenomenologist views i t . In R. S. V a l l e & M. King (Eds.), E x i s t e n t i a l phenomenological a l t e r n a t i v e s for psychology (pp. 48-71). New York: Oxford U n i v e r s i t y Press. C o l l i e r , G., & Kuiken, D. (1977). A phenomenological study of the experience of poetry. Journal of Phenomenological Psychology. 7, 209-225. Cousins, N. (1979). Anatomy of an i l l n e s s as perceived by the patient. New York: W. W. Norton. Cousins, N.  (1981).  Human Options.  New York: W. W. Norton.  Cousins, N.  (1989).  B e l i e f becomes biology.  Advances. 6(3), 20-29.  Cunningham, A. J . (1985). The influence of mind on cancer. Psychology. 26(1), 13-29.  Canadian  Cunningham, A. J . (1987-1988). From neglect to support to coping: The evolution of psychosocial intervention for cancer patients. In C. Cooper (Ed.), Stress and breast cancer. Toronto: John Wiley. Derogatis, L. R., Abeloff, M. D., & Melisaratos, N. (1979). Psychological coping mechanisms and s u r v i v a l time i n metastatic breast cancer. Journal of the American Medical Association, 242(14), 1504-1508.  147  Dimsdale, J . E. (1974). The coping behavior of Nazi concentration camp s u r v i v o r s . American Journal of Psychiatry, 131(7), 792-797. Dimsdale, J . E. (Ed.). (1980). Essays on the Nazi holocaust. Dosdall, C , & Broatch, J . Toronto: Seal Books. Dossey, L. search.  Survivors, victims and perpetrators: Washington, DC: Hemisphere.  (1986).  My Godl  I thought you'd died.  (1989). Recovering the s o u l : A s c i e n t i f i c and s p i r i t u a l New York: Bantam Books.  Durckheim, K. G. von. (1980). The way of transformation: Daily l i f e as s p i r i t u a l p r a c t i c e . London: Unwin Paperbacks. E i t i n g e r , L. (1964). Concentration camp survivors i n Norway and I s r a e l . London: A l l e n & Unwin. E l k i n , A. P. (1977). Martin's Press.  Aboriginal men of high degree.  New York: St.  F i o r e , N. (1979). Fighting cancer: One patient's perspective. England Journal of Medicine, 300(6), 284-289.  The New  Folkman, S. (1982). An approach to the measurement of coping. of Occupational Behavior, 3., 95-107.  Journal  Folkman, S., & Lazarus, R. S. (1980). An analysis of coping i n a middle-aged community sample. Journal of Health and S o c i a l Behavior, 21(3), 219-239. Forester, B., Kornfeld, D. S., & F l i e s s , J . L. (1985). Psychotherapy during radiotherapy: E f f e c t s on emotional and physical d i s t r e s s . American Journal of Psychiatry, 142., 22-27. Fox, B. H. (1983). Current theory of psychogenic e f f e c t s on cancer incidence and prognosis. Journal of Psychosocial Oncology, 1(1), 17-31. Frankl, V. (1969). The w i l l to meaning: Foundations and a p p l i c a t i o n s of logotherapy. New York: New American L i b r a r y . Frankl, V. (1984). Man's search for meaning: An introduction to logotherapy. New York: Simon & Schuster. F r i e r e , P.  (1970).  Pedagogy of the oppressed.  New York: Seabury Press.  Gennep, A. van. (1961). Rites of passage (M. B. Vizedon & G. L. Caffee, Trans.). Chicago: University of Chicago Press.  148  G i o r g i , A. (1975). An a p p l i c a t i o n of phenomenological method in psychology. In A. G i o r g i , G. T. Fischer, & E. L. Murray (Eds.), Duquesne studies in phenomenological psychology, II (pp. 82-103). G i o r g i , A. (1975). Convergence and divergence of q u a l i t a t i v e and quantitative methods in psychology. In A. G i o r g i , G. T. Fischer, & E. L. Murray (Eds.), Dusquesne studies in phenomenological psychology. H (pp. 72-79). Glaser, B., & Strauss, A. Chicago: Aldine. Glassman, J . (1983). York: Doubleday.  (1967).  The discovery of grounded theory.  The cancer s u r v i v o r s : And how they did i t .  New  Goldstein, J . , & K o r n f i e l d , J . (1987). Seeking the heart of wisdom: The path of insight meditation. Boston: Shambala. Goodbread, J . H. (1987). The dreambody t o o l k i t : A p r a c t i c a l introduction to the philosophy, goals and practice of process-oriented psychology. New York: Routledge & Kegan Paul. Goodkin, K., Antoni, M. H., & Blaney, P. H. (1986). Stress and hopelessness i n the promotion of c e r v i c a l i n t r a e p i t h e l i a l neoplasia to invasive c e l l carcinoma of the c e r v i x . Journal of Psychosomatic Research. 30(1), 67-76. Greer, S. (1979). Psychological enquiry: A contribution to cancer research. Psychological Medicine, 9, 81-89. Greer, S., Morris, T., & Pettingale, K. W. (1979). Psychological response to breast cancer: E f f e c t on outcome. Lancet, ii(8146). 785-787. Greer, S., & S i l b e r f a r b , P. M. (1982). Psychological concomitants of cancer: Current state of research. Psychological medicine. 12, 563-573. Grof, S., & Grof, C. (1980). London: Thames & Hudson.  Beyond Death: The gates of consciousness.  Grof, S., & Grof, C. (Eds.) (1989). S p i r i t u a l emergency: When personal transformation becomes a c r i s i s . Los Angeles: J . P. Tarcher. Grof, S., & Halifax, J . York: E. P. Dutton.  (1977).  The human encounter with death.  New  149  Grossarth-Maticek, R. (1980a). Psychosocial predictors of cancer and i n t e r n a l diseases: An overview. Psychotherapy and Psychosomatics. 22, 122-128. Grossarth-Maticek, R. (1980b). S o c i a l psychotherapy and course of the disease: F i r s t experiences with cancer patients. Psychotherapy and Psychosomatics, 33, 129-138. Grossarth-Maticek, R., Bastiaans, J . , & Kanazir, D. T. (1985a). Psychosocial factors as strong p r e d i c t o r s of m o r t a l i t y from cancer, ischaemic heart disease and stroke: The Yugoslav prospective study. Journal of Psychosomatic Research, 29, 167-176. Grossarth-Maticek, R., Frentzel-Beyme, R., & Becker, N. (1984). Cancer r i s k s associated with l i f e events and c o n f l i c t s o l u t i o n . Cancer Detection and Prevention, 1, 201-209. Grossarth-Maticek, R., Kanazir, D. T., Schmidt, P., & Vetter, H. (1982a). Psychosomatic factors i n the process of cancerogenesis. Psychotherapy and Psychosomatics,, 28, 284-302. Grossarth-Maticek, R., Kanazir, D. T., Schmidt, P., & Vetter, H. (1985b). Psychosocial and organic v a r i a b l e s as p r e d i c t o r s of lung cancer, cardiac i n f a r c t and apoplexy: Some d i f f e r e n t i a l p r e d i c t o r s . P e r s o n a l i t y and Individual Differences, 6, 313-321. Grossarth-Maticek, R., Schmidt, P., Vetter, H., & Arndt, S. (1984). Psychotherapy research i n oncology. In A. Steptoe & A. Matthews (Eds.), Health care and human behavior (pp. 325-341). New York: Academic Press. Grossarth-Maticek, R., S i g r i s t , J . , & Vetter, N. (1982b). Interpersonal repression as a predictor of cancer. S o c i a l Science and Medicine, 16, 493-498. Guggenbuhl-Craig, A. (1971). Power i n the helping professions. Zurich: Spring P u b l i c a t i o n s . H i l t o n , A. B. (1986). The r e l a t i o n s h i p of uncertainty, c o n t r o l , fear of recurrence, and commitment to coping s t r a t e g i e s used by women diagnosed with breast cancer. Unpublished doctoral d i s s e r t a t i o n , U n i v e r s i t y of B r i t i s h Columbia, Vancouver. Hislop, T. G., Waxier, N. E., Coldman, A. J . , Elwood, J . M., & Kan, L. (1987). The prognostic s i g n i f i c a n c e of psychosocial factors i n women with breast cancer. Journal of Chronic Diseases. 40(7), 729-735.  150  Hutschnecker, A. A. Library.  (1966).  The w i l l to l i v e .  New  York: Cornerstone  Hyman, S. (1977). D e a t h - i n - l i f e — L i f e - i n - d e a t h : Spontaneous process in a cancer patient. Spring, 27-41. I s r a e l , L.  (1978).  J a f f e , D. T.  Conquering cancer.  (1980).  New  Healing from within.  York: Plenum Medical Book. New York: Bantam.  Jager, B. (1978). Toward a phenomenology of the passions. In R. S. Valle & M. King (Eds.), Existential-phenomenological a l t e r n a t i v e s for psychology (pp. 341-357). New York: Oxford U n i v e r s i t y Press. Joy, W. B. (1979). Joy's Way: Los Angeles: J . P. Tarcher.  A map  for the transformational journey.  Jung, C. G. (1960). The transcendent function. (Vol. 8). London: Routledge & Kegan Paul. Jung, C. G. K l i n e , D.  (1961). (1988).  Kubler-Ross, E.  In Collected Works  Memories, dreams, r e f l e c t i o n s . The power of the placebo.  (1969).  On death and dying.  New  York: Vintage.  Hippocrates, May/June. New York: Macmillan.  Kubler-Ross, E. (1975). Death, the f i n a l stage of growth. C l i f f s , NJ: P r e n t i c e - H a l l . Kubler-Ross, E. Macmillan.  (1981).  L i v i n g with death and dying.  Kubler-Ross, E.  (1982).  Working i t through.  Kubler-Ross, E., & Warshaw, M. (1978). Englewood C l i f f s , NJ: P r e n t i c e - H a l l . Lazarus, R. S., & Folkman, S. New York: Springer.  (1984).  New  New  Englewood  York:  York: Macmillan.  To l i v e u n t i l we say goodbye.  Stress, a p p r a i s a l , and coping.  Lerner, M. (1989). Psychotherapy and cancer turning p o i n t ] . Advances, 6(3), 66-70.  [Review of Cancer as a  Leshan, L. L. (1959). Psychological states as factors i n the development of malignant disease: A c r i t i c a l review. Journal of the National Cancer I n s t i t u t e , 22, 1-18.  151  LeShan, L. L. (1966). An emotional l i f e - h i s t o r y pattern associated with neoplastic disease. Annals of the New York Academy of Science. 125. 780-793. LeShan, L. L. (1989). Cancer as a turning point: A handbook for people with cancer, t h e i r f a m i l i e s , and health professionals. New York: E. P. Dutton. LeShan, L. L., & LeShan, E. (1961). Psychotherapy and the patient with a limited l i f e span. Psychiatry, 24.( 4), 318-323. Levine, S. Anchor.  (1987).  Healing into l i f e and death.  Garden C i t y ,  NY:  Lockhart, R. A. (1977). Cancer in myth and dream: An exploration into the archetypal r e l a t i o n between dreams and disease. Spring. 1-26. Mages, N. L., & Mendelsohn, G. A. (1979). E f f e c t s of cancer on patients' l i v e s : A personological approach. In G. C. Stone, F. Cohen, & N. E. Adler (Eds.), Health psychology: A handbook (pp. 255-284). San Francisco: Jossey-Bass. Martus, R. F. (1985). The experience of b e l i e v i n g in the healing process. Unpublished doctoral d i s s e r t a t i o n , Union for Experimenting Colleges and U n i v e r s i t i e s . Meares, A. (1980). What can the cancer patient expect from intensive meditation? Australian Family Physician, 9, 322-325. Meier, C. A. (1963). Psychosomatic medicine from the Jungian point of view. Journal of A n a l y t i c a l Psychology, £(2), 103-122. Menaghan, E. G. (1983). Individual coping e f f o r t s : Moderators of the r e l a t i o n s h i p between l i f e stress and mental health outcomes. In H. B. Kaplan (Ed.), Psychological s t r e s s : Trends i n theory and research (pp. 157-191). New York: Academic Press. Mindell, A. (1982). Dreambodv: The body's r o l e in revealing the s e l f . Boston: Sigo Press. Mindell, A. (1985a). River's Way: London: Routledge & Kegan Paul.  The process science of the dreambody.  Mindell, A. (1985b). Working with the dreaming body. Routledge & Kegan Paul. Mindell, A. (1987). & Kegan Paul.  The dreambody in r e l a t i o n s h i p s .  London:  London: Routledge  152  Mishler, E. G. (1986). Research interviewing: Context and narrative . Boston: Harvard U n i v e r s i t y Press. Moos, R. H., & Tsu, V. D. (1977). The c r i s i s of physical i l l n e s s : An overview. In R. H. Moos (Ed.), Coping with physical i l l n e s s (pp. 1-22). New York: Plenum. Moss, R. M.  (1981).  The I that i s we.  Berkeley: C e l e s t i a l A r t s .  Moss, R. M. (1985). How s h a l l I l i v e : Transforming surgery or any health c r i s i s into greater a l i v e n e s s . Berkeley: C e l e s t i a l A r t s . Moss, R. M. (1986). The black b u t t e r f l y : An i n v i t a t i o n to r a d i c a l a l i v e n e s s . Berkeley: C e l e s t i a l A r t s . Newton, B. W. (1982-1983). The use of hypnosis in the treatment of cancer patients. American Journal of C l i n i c a l Hypnosis, 25, 104-113. P e l l e t i e r , K. R. (1977). Mind as healer, mind as s l a y e r : A h o l i s t i c approach Lo preventing stress disorders. New York: D e l l . Penninton, M. S. (1982). L i v i n g or dying: An i n v e s t i g a t i o n of the balance point. Unpublished doctoral d i s s e r t a t i o n , U n i v e r s i t y of Toronto. PclLiiKjdle, K. W., Morris, T., Greer, S., & Haybittle, J . L. (1985). Mental factors in cancer: An a d d i t i o n a l prognostic factor. Lancet, 1(8431), 750. Ram Dass, & Gorman, P. (1985). How can I help? Stories and r e f l e c t i o n s on s e r v i c e . New York: A l f r e d A. Knopf. Rossi, E. L. (1986). The psychobiology of mind-body healing: concepts of therapeutic hypnosis. New York: W. W. Norton.  New  Rossman, M. (1989). I l l n e s s as an opportunity for healing. In R. Carlson & B. Shield (Eds.), Healers on healing (pp. 78-81). Angeles: J . P. Tarcher. Sanford, J . A. S i e g e l , B. S. Row.  (1977). (1986).  Healing and wholeness.  Love, medicine and miracles.  S i e g e l , B. S. (1989). Love, the healer. (Eds.), Healers on healing (pp. 5-11). Siebert, A. Magazine.  New  (1980, January 27).  Los  York: P a u l i s t Press. New  York: Harper &  In R. Carlson & B. Shield Los Angeles: J . P. Tarcher.  The survivor personality.  Northwest  153  Siebert, A. (1983, August-September). The survivor personality. Association for Humanistic Psychology Newsletter (Research Report, pp. 19-22). San Francisco. Siebert, A. (1985, A p r i l ) . The human of the future: The s y n e r g i s t i c p e r s o n a l i t y . Paper presented at the Western Psychology Association Convention, San Jose, CA. Simonton, S. M.  (1984).  The healing family.  Toronto: Bantam.  Simonton, 0. C , & Matthews-Simonton, S. (1981). Cancer and s t r e s s : Counseling the cancer patient. Medical Journal of A u s t r a l i a . 1, 679-683. Simonton, 0. C , Matthews-Simonton, S., & Creighton, J . L. (1978). Getting well again: A step-by-step s e l f - h e l p guide to overcoming cancer f o r patients and t h e i r f a m i l i e s . New York: Bantam. Simonton, 0. C , Matthews-Simonton, S., & Sparks, T. F. (1980). Psychological intervention i n the treatment of cancer. Psychosomatics. 21(3), 226-233. Spiegel, D., Bloom, J . R., & Yalom, I. (1981). Group support for patients with metastatic cancer. Archives of General Psychiatry. 38. 527-533. Spiegel, D., & Yalom, I. (1978). A support group for dying patients. International Journal for Group Psychotherapy, 28, 233-245. Staff. (1987, March). Mandate f o r the National C o a l i t i o n f o r Cancer Survivorship. NCCS Networker. 1(1), 7. Stein, R. M. (1976). Body and psyche: An archetypal view of psychosomatic phenomena. Spring, 66-80. Tache, J . , Selye, H., & Stacey, B. (Eds.). death. New York: Plenum Medical Book.  (1979).  Cancer, stress and  Telch, C. F., & Telch, M. J . (1985). Psychological approaches for enhancing coping among cancer patients: A review. C l i n i c a l Psychology Review, 5, 325-344. Telch, C. F., & Telch, M. J . (1986). Group coping s k i l l s i n s t r u c t i o n and supportive group therapy for cancer patients: A comparison of s t r a t e g i e s . Journal of Consulting and C l i n i c a l Psychology. 54(6), 802-808. V a l l e , R. S., & King, M. (Eds.) (1978). Existential-phenomenological a l t e r n a t i v e s for psychology. New York: Oxford University Press.  154  Weisman, A. D. (1976a). Early diagnosis of v u l n e r a b i l i t y i n cancer patients. American Journal of the Medical Sciences, 271(2), 187-197. Weisman, A. D.  (1979).  Coping with cancer.  Weisman, A. D., & Worden, J . W. (1975). cancer deaths. Omega, 6, 61-75.  New York: McGraw-Hill.  Psychosocial analysis of  Weisman, A. D . , & Worden, J . W. (1976b). The e x i s t e n t i a l p l i g h t i n cancer: The s i g n i f i c a n c e of the f i r s t 100 days. International Journal of Psychiatry i n Medicine, 7(1), 1-15. Weisman, A. D . , & Worden, J . W. (1977). Coping and v u l n e r a b i l i t y in cancer patients (Research Report No. 1R01 CA-14104). Boston: Project Omega, Harvard Medical School and Massachusetts General Hospital. Weisskopf-Joelson, E. (1978). Six representative approaches to e x i s t e n t i a l therapy: Viktor E. Frankl. In R. S. V a l l e & M. King (Eds.), Existential-phenomenological a l t e r n a t i v e s for psychology (pp. 274-284). New York: Oxford U n i v e r s i t y Press. Wilber, K. (1885). personal growth.  No Boundary: Eastern and western approaches to Boston: Shambhala.  Williams, D. L. (1981). Border Crossings: A psychological perspective on Carlos Castaneda's path of knowledge. Toronto: Inner C i t y Books. Woodman, M. (1985). The pregnant v i r g i n : A process of psychological transformation. Toronto: Inner C i t y Books. Worden, J . W. ((1983). Psychological screening of cancer patients. Journal of Psychosocial Oncology, 1(4), 1-10. Worden, J . W., & Sobel, H. J . (1978). Ego strength and psychosocial adaptation to cancer. Psychosomatic Medicine, 40.(8), 585-592. Worden, J . W., & Weisman, A. D. (1984). Preventative psychosocial intervention with newly diagnosed cancer patients. General Hospital Psychiatry. 6(4), 243-249. Youssef, F. A. (1984). C r i s i s intervention: A group therapy approach for h o s p i t a l i z e d breast cancer patients. Journal of Advanced Nursing. 9, 307-313. Z i e g l e r , A. J . (1983). Publications.  Archetypal Medicine.  Dallas: Spring  155  TRANSCRIPT i l (Case D)  I: Why don't I t e l l you again about t h i s p r o j e c t . I t ' s a study looking at what i t means to survive terminal cancer and be changed by i t . D:  So, you're most interested i n how i t has changed my l i f e .  I: Yes, I ' l l help you along. Why don't we s t a r t from the beginning? So that would be 20 years ago, when you f i r s t knew you had cancer. Maybe you could t e l l me a l i t t l e about what was happening i n 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 i n P a r k s v i l l e . 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 t h i s blue mark. I thought, that's funny. And I started f e e l i n g around and I f e l t something hard. I didn't know whether i t was my r i b or not. Now i t was about the s i z e of a B r a z i l nut i n shape and hardness. I got out a l l my medical books and started to read. I thought, that i s 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 o f f and had a r e a l l y good time. My brother and I — he's about f i v e 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 t r o t t i n g across on the rocks. Walking across. I t made me f e e l young you know. I t was r e a l l y , r e a l l y 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 s i x months before. But he stood o f f about s i x feet and he s a i d , "Where i s i t ? " Now, I'd had to r e a l l y d i g 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 i n h o s p i t a l , I said to the doctor that I wanted to know what was coming down. And he s a i d , "As soon as I know, y o u ' l l know." And that was very h e l p f u l . . . 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 s a i d , "You can't wear that!" Because i t shows, heh. Well, t h i s was a s u r p r i s e . . . Now, as far as i t changing my l i f e . . . We d i d lapidary. got me working with stones the same as he does... I should go back to when I came home from the h o s p i t a l .  My husband  I had to  156  have c o b a l t t r e a t m e n t s i m m e d i a t e l y . And t h e y had t o d r e s s me each time because i t hadn't h e a l e d . And a f t e r t h e c o b a l t I found a lump i n t h e o t h e r b r e a s t . And t h i s one was p a i n f u l . You know, c a n c e r i s n ' t painful. P e o p l e always t h i n k o f i t as p a i n f u l . I t has t o p r e s s on s o m e t h i n g , l i k e a nerve or an organ t o be p a i n f u l . I went t o t h e surgeon. And he s a i d , " I don't t h i n k t h i s i s c a n c e r , b u t because you've had c a n c e r , we've g o t t o do a b i o p s y . " T h i s was r i g h t a f t e r t h e c o b a l t . There was 17 c o b a l t t r e a t m e n t s , and you g e t f i v e a week. I t would have been q u i t e a w h i l e a f t e r the s u r g e r y . So, t h a t t u r n e d o u t t o be a c y s t . But t h e n e i g h b o u r s a l l had me dead. And I s a i d , "I'm n o t d y i n g t o d a y ! " T h a t ' s how I g o t r i d o f t h a t k i n d o f s t u f f ! I:  Why was t h a t ?  Were t h e y a f r a i d ?  D: A l o t o f p e o p l e a s s o c i a t e c a n c e r w i t h d e a t h . 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 p e o p l e , as soon as t h e y f i n d o u t t h e y have c a n c e r , t h e y s a y , "Oh! I'm d y i n g . " I n f a c t , my husband t h o u g h t I was d y i n g . A l l t h e p e o p l e he e v e r h e a r d o f d i e d o f c a n c e r . I:  Why do you t h i n k you were d i f f e r e n t ?  D: I t h o u g h t i t was because I knew about c a n c e r . And y e a r s 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 g o t me when I'd go t o those meetings and sec a l l t h a t f e a r . And I ' d s a y , we've g o t t o t e a c h p e o p l e about c a n c e r , so t h e y won't be so s c a r e d when t h e y g e t i t . And one n i g h t B.W. s a i d t o me, "D. do you t h i n k i t ' s because you were a n u r s e or because y o u ' r e you?" I p u t some thought t o 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 t h e y t a u g h t me t o box. And I wanted t o p l e a s e 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 a p p p r o v a l . So maybe. I don't r e a l l y know m y s e l f . . . My o l d e s t d a u g h t e r was g e t t i n g m a r r i e d . And t h e y came up t o see me i n t h e h o s p i t a l . And I t h o u g h t , t h a t ' s f i n e . I ' l l be a b l e t o go t o t h e wedding. W e l l , my God, a l l o f a sudden... I guess your arm c a n s t a r t t o s w e l l a t any t i m e , maybe 10 y e a r s l a t e r . But I t h i n k when I g o t t h e cobalt that probably that d i d i t . Because my arm b a l l o o n e d up. The one t h i n g t h e d o c t o r s a i d was, "Don't baby your arm." And so I g o t down on my hands and knees and I p o l i s h e d e v e r y damn f l o o r ! Waxed and s c r u b b e d e v e r y f l o o r i n t h e house. So t h a t was n o t b a b y i n g 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 t h e d o c t o r h i s nurse s a i d , "You're g o i n g t o have t o go i n t o h o s p i t a l . " I s a i d , " I c a n ' 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 t h e s u r g e o n who'd done t h e s u r g e r y was on v a c a t i o n so t h e r e was a n o t h e r d o c t o r 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 u n d e r n e a t h my c h a i r , and up t h i s way, and then he p u t a c h a i n , and t h e n p u t a p i l l o w i n t h e 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 b l a c k I'd lower i t down and l e t the b l o o d  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 a f t e r I started going to "Living with Cancer", a nurse c l i n i c i a n who now l i v e s in Hawaii, s a i d , "D., why don't you t r y t h i s Jobis machine?" Well, I had never heard of i t . And so I went i n . It was l i k e two rubber sleeves. And they would force a i r 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 i n , u n t i l i t got down to where i t wasn't going to get any smaller. Then they sent away to Toledo, Ohio for t h i s custom-made sleeve. And that was a l o t nicer, because before, with the bandages and with the arm so b i g , I learned an awful l o t about designing, because you can't buy something that's got a big enough sleeve in t h i s one and a small enough one i n the other. Whatever f i t me here didn't f i t me anywhere e l s e . So I made my own clothes. What upucts me now i s that I can't sew. And I've even sewn with leather and made l o t s of leather vests and everything. I l i k e to be doing those things... What has changed i n my l i f e i s 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° i n 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 l i k e a pancake. If you don't l i k e the s e t t i n g you can melt i t again, and melt i t again. So I can show you a r i n g 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 l o t of leather work, I went into doing that. But now my hand i s so shaky that I can't hold i t steady. And I loved scrimshaw!... This i s on horn. But I ' l l show you my f i r s t piece I ever did. I didn't have much i n the way of ivory when I started t h i s , and by the time Stew bought me two shark's teeth, my hand was shaking too much to do anything. But t h i s was the f i r s t piece I ever d i d . And then, t h i s was the second piece. Now those are on ivory. And t h i s i s horn. And those things are horn. And horn i s a l o t harder to work on than ivory. But a Japanese lady does gold on... i t ' s l i k e glass, but i t ' s . . . I ' l l remember l a t e r on what i t i s . . . But Stew slabbed t h i s stone up for her to work on, and she gave me t h i s . That's gold she's put in there. But she's a r e a l a r t i s t . I r e a l l y 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 t o . . .  158  So, when I was a l i t t l e g i r l , my s i s t e r and I used to look forward to the Sunday school p i c n i c . See, I was born i n S p r i n g h i l l , a mining town, i t ' s a l i t t l e small town. The Sunday school p i c n i c was the thing of the your. And this p a r t i c u l a r year i t rained cats and dogs. Well, we were disappointed, but my mother s a i d , "There's always compensations!" And of course I had to get older to r e a l i z e that she made the compensations. She got the l i t t l e d o l l s ' table out and we had a l i t t l e tea party... This i s what I t e l l people about cancer: "There's compensation. You give up t h i s , 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 w e l l . " . . . Now a f t e r 10 years I started having t i n g l i n g and numbness in my f i n g e r s . Just the r i g h t arm. And I told the cancer c l i n i c . The doctor got very e x c i t e d . Because t h i s r i g h t e y e l i d droops, too. They happened at the same time. And he figured l i k e 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 t o l d 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. t e s t . Well, when I had the E.M.G. t e s t , then those fingers just danced. The doctor s a i d , "Why did you wait so long?" He thought the trouble was i n my armpit. I said there's nothing there. So, he got very determined. Phoned the neurologist and t o l d the neorologist I should be sent back to the cancer c l i n i c . And I thought w e l l , 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 h e r s e l f . She never t o l d . She was the only one who could f e e l the lump. I t 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 s l i i n j , and her doctor had t o l d 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 s a i d , "I give myself 10 minutes a day to f e e l sorry for myself." And a young s q u i r t who had cancer s a i d , " I ' l l give you my cancer!" Well, since t h i s doctor has d i e d — s h e ' s been dead some y e a r s — I think, i f only I'd known she had cancer, and she never said a boo. She had cancer, and just l e t this woman steam o f f . But she knew what i t was a l l about. She also knew that I had this other problem. And I s a i d , "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 r i g h t one  159  has." So she put me on tamoxifen [an antihormonal drugl. for four and a half years.  I was on that  And then, things started to get worse. So they thought they would do some r a d i a t i o n . And I s a i d , "How come you say now that you can give me some radiation? You t o l d me seven years ago that I'd had a l l the r a d i a t i o n that I could have." And they s a i d , "Oh, there's one spot we can zap you!" Well, I said that I'd planned t h i s t r i p back east and there was so many stops to be made, and the fact that my s i s t e r - i n - l a w was in a wheelchair and my brother has only one hand. I didn't want anything to screw t h i s thing up, you know what I mean. He said okay, and put me on megase, which i s another hormone. And he s a i d , " 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 t a l k i n g 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 l i k e to do t h i s ? " Which puts a h e l l 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, t h i s thing has metastasized to my neck, God knows where else i t ' s gone. So, I took the chemo, and when I was f i n i s h e d , there were two lumps that they could f e e l were gone, and one was s t i l l there. But I went for three years without that doing anything, and l a s t January i t started up. And I have had about s i x months of chemo again. Three d i f f e r e n t drugs. And they now t e l l me... When I went to the neurologist I didn't r e a l i z e the cancer got t h i s f a r . I thought maybe I was s t a r t i n g with Parkinson's disease. "Jesus C h r i s t ! Who wants that?" (mimicking the parkinsonian drawl]. Anyway, she thought there was no s t i f f n e s s of the muscles and she s a i d , "You've had t h i s shakiness for so many years, I think you're doing a l r i g h t . " 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 r e s t . I'm looking forward to that. Today I didn't f e e l very good, but yesterday I f e l t almost myself. So I'm looking forward to f e e l i n g good... I:  like  The old you again.  D: If that's possible, because a f t e r a l l , you've aged i n 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 i s t h a t — a n d even you who are probably very  160  h e a l t h y — i t ' s something everybody has to do, i s to take one day at a time. Because you could get h i t 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 h a l l e l u j a ! " 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 i s not morbid at all. I t ' s not at a l l morbid. I get a r e a l bang out of going! Some of the things that are s a i d ! Did I t e l l you about the man who said one evening—there were a l o t of breast patients t h e r e — " I don't know why these women make such a fuss over breasts. You know, a f t e r a l l ! " I s a i d , "Well, i t sure screws up your skinny dipping!!" That shut him up. He stopped r i g h t there. He hadn't thought about that. Because this same man, i f you removed his scrotum, he'd f e e l a helluva l o t d i f f e r e n t , woulnd't he! You bet ya! It's not the loss so much as... What bothers me about l o s i n g my hair i s 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 l o s t your h a i r . But the fact that you don't look the same. I t r i e d 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 t h i s hat when I go out. And i t gives me a l i t t l e jaunty look, so that's f i n e ! . . . I: Would you say that time about ten years ago when you found that other lump, was that a turning point for you i n any way? D: When I f i r s t found the cancer and I was in h o s p i t a l , and an intern asked me how I would f e e l 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 a t t i t u d e changed. I didn't want to go! I t ' s d i f f e r e n t going, when you've got you and your... But I wanted to s t i c k around and see those kids! And, an 80-year-old man who used to l i v e across the s t r e e t , 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 j e t p i l o t , and a f t e r he died, they landed on the moon. And that would have been so e x c i t i n g for him. But you see, even i f you l i v e d to 130, you're s t i l l going to miss something, so i t r e a l l y doesn't make a l l that much d i f f e r e n c e . 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 i t ?  161  D:  Yeah.  I:  You're not t i r e d of i t .  D: No, I'm not. And I think I remember t a l k i n g 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 t h i s 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 t h i s nurse said i t was hard f o r her because she hadn't had any r e a l joy i n l i f e . But t h i s woman, every meeting, she would s t a r t saying, "My house i s n ' t paid f o r . 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 s a i d , "Clara, I ' l l t e l l you a l i t t l e story about the farmer who had a b a r r e l of apples. And one was going r o t t e n . So he ate that one. And the next day there was another one going rotten. And he ate that one." And I s a i d , "At the end of the b a r r e l he'd eaten a b a r r e l of rotten apples!" And I s a i d , "Why don't you get out and have some fun?" She'd always wanted to go back to Hungary and see her r e l a t i v e s . She went, and when she came back, she was so far gone they had to take an ambulance to get her to the h o s p i t a l to d i e . 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 l i v e d i n Montreal I'd gone back to S p r i n g h i l l . I had two c h i l d r e n then. When we came west, we had l o s t everything we had in Montreal, and had to s t a r t 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 g u i l t y about not having got back... And now my father had made the t r i p out here a f t e r he was 80. He'd made two t r i p s out here. So my c h i l d r e n 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 S c o t i a ! Now, a year a f t e r my cancer I went back. I've been back a few times since then. I've been to Hawaii. I've been down to C a l i f o r n i a a few times. What I'm trying to say i s that thing that I hadn't done was important to do and a f t e r 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 f e e l 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 r e l a t i v e s , that made her s a t i s f i e d to die then. But having something l e f t undone—of course you always have something you wanted to d o — b u t something that's been gnawing at you should be done. f  And another thing, we had... My brother and h i s wife, when they would come ovur from P a r k s v i l l e , we were i n the habit of the f i r s t night we would always go to a restaurant to eat. So, we c a l l e d a t a x i , 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 d i d . These two young people were in a stolen car, and they were going l i k e a bat out of h e l l . It was a brand new t a x i , and the taxi d r i v e r t r i e d desperately to get us out of the way. And what happened was they h i t us, and turned us completely around. And I s a i d , "What's my purse doing over there?" You see I was in shock. And then my brother l e t out a groan, and I thought, my God, we've been in an accident! And my husband wasn't t a l k i n g . So I dashed out of the car and ran around to see how he was. He wasn't t a l k i n g because he'd h i t that thing on the side there and his r i b s were broken. And he didn't want to breathe even. And my brother wai; bruised badly, and my s i s t e r - i n - l a w was bruised. And l u c k i l y , here with me, I'm r i g h t down to the r i b s on this s i d e . But h i t t i n g my s i s t e r - i n - l a w , she's f a t , she cushioned me b e a u t i f u l l y ! If I had been where Stew was, I'd have been dead!! Anyway, my brother's glasses went c l e a r r i g h t into the b i c y c l e track. My s i s t e r - i n - l a w ' s earrings were gone. And I had s p l i t a seam in my coat, and I'd b i t my tongue, because I'm always t a l k i n g ! Anyway, we decided a f t e r that, my husband and I, that our three c h i l d r e n , they don't l i v e i n Vancouver anymore. And we thought, gee whiz, i f we were both k i l l e d , what a helluva r e s p o n s i b i l i t y t h i s would be for them. So we went downtown, saw a j u s t i c e of the peace, and he s a i d , "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 f i n e . " So we d i d 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 s e r v i c e . So he came in and talked. And we were a l l for that. We thought, gee, t h i s i s 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 t h i s i s great. I t ' 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 t h i s fellow s a i d , "What do you want to do with the ashes?" I s a i d , "I don't give a damn what you do with them!" He s a i d , "Oh, w e l l . . . " — r e a l old undertaker t a l k — " y o u know you should do uomething." I s a i d , "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 b i t from the aoheu, that's f i n e . " "Oh, and there should be a plaque." I s a i d , "A plaque!" "Oh yes, something for your c h i l d r e n to see to know that you've been." I s a i d , "For God's sake, I don't want my kids s t a r i n g at a bloody plaque!! Just forget that!" So, we're down to the very minimum of what we want. Cremation and to h e l l with i t ! But at l e a s t i t ' s written there so that the kids know... That again i s funny. Because an old man who used to l i v e across the s t r e e t , 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 t o l d his wife where to buy the oranges. He just took a l l the r e s p o n s i b i l i t y from her. Well, my God, he was hardly cold i n 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: or  Would you say having t h i s i l l n e s s has changed your ideas about a s p i r i t , or given you any thoughts about l i f e a f t e r death?  God,  B: No, and this i s rather sad, because I've got a son who has done research on the b i b l e . 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 i s prove the truth of the b i b l e . Because the bible knew before s c i e n t i s t s d i d . [...] When I was a k i d , my father used to take us to church. You went to church in the morning, and sunday school a f t e r church, and then you went in the evening, and he always took me to prayer meeting on Wednesday night. So I had a l o t of teaching of the b i b l e . And he also became an elder and had family worship. One thing he always ended h i s 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 t h i s . When I was i n t r a i n i n g , I used to go to a church very handy to the h o s p i t a l . And I was married there, and my three c h i l d r e n 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 d i e , and i f that's a l l there i s , that's f i n e . So, I haven't suddenly... I know some people who are threatened with death, they suddenly get r e l i g i o n . And I know that they said the t h i e f on the cross in the eleventh hour d i d f i n e , but that's not my way of thinking... I:  I t sounds l i k e your way  i s to l i v e l i f e now  fully...  D: Yeah... Like when my mother-in-law was i n h o s p i t a l , the theologian came around and he said something about heaven being a b e a u t i f u l place. And I s a i d , "Don't rush me!" I guess I'm a b i t from Missouri. I know what there i s here, and I don't know i f there i s 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 b i t of good. Anyway, I'm a f r a i d you can't c a l l me a b e l i e v e r . 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 a t t i t u d e s towards s u f f e r i n g have changed, s u f f e r i n g and i l l n e s s ? People always ask, "Why i s there t h i s hardship?" There must have been times when you asked, "Why me?" D: No, I never d i d that. I know when you read about cancer patients, there's f i v e d i f f e r e n t 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 d i d think b r i e f l y , maybe a l i t t l e b i t about death. And I thought, w e l l , i f t h i s i s i t , thank God my c h i l d r e n are just about grown up. I think i t ' s f a r harder for a mother i f she has small c h i l d r e n . 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 i n h e l l . And she found out when she was pregnant with her second c h i l d . What worries her, she says she's got l o t s of family support, but she s a i d , "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 i s a very legitimate thought... the  But I never went through the, "Why me?" fear.  I:  And you didn't p a r t i c u l a r l y get angry...  And I never went through  D: One thing I d i d 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 r a d i c a l . And they discovered that removing the pectoral muscle didn't help one bloody b i t . I s a i d , " I f only..." Now, i f - i t i s i s a waste of time. But I had to find out, you see. Like my husband said, "Yes, but you're a l i v e . " And l e t ' s face i t , that's how much the doctors knew then. They did the best they could. There's no sense... In fact, f e e l i n g sorry for yourself i s a t o t a l waste of time. I t 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 l o t of talk about p o s i t i v e 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 p o s i t i v e ! " Well, i f i t ' s a chore to be p o s i t i v e , i t ' s not going to work. The reason you should have p o s i t i v e thinking i s when you're laughing, and when you have humour, you f e e l better. So, that chap who wrote the book and said he had a very serious disease, and he bought a whole l o t of comical movies and watched that. Now, that's f i n e , but that w i l l only go so f a r . I f you're well, you  165  have negative thoughts as well as p o s i t i v e thoughts. And i t ' s okay to have a negative thought. As long as you don't l e t i t get a hold of you. If you're not aware... This i s why I l i k e to get people e a r l y , when they've f i r s t got t h e i r 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 p s y c h i a t r i s t to get that poor bugger out of that mess. Because they've got too deep i n . 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 t e e t e r t o t t e r . One day I would say, "This i s n ' t f a i r . My parents l i v e d to t h e i r e i g h t i e s . " And the next day I'd say, "To h e l l with t h i s ! " And I'd enjoy myself. So i t was l i k e that for a week I'd say. And that was okay. And of course I've faced the thought of death many times i n the 20 years. And the l a s t time I r e a l l y 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 f e e l dreadful! I didn't want them to f e e l so bad. I've t o l d 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 f e e l bad. But i n 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 d e l i v e r e d , he was dead. That's l i v i n g , eh? I know some people when they get an i l 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 l i k e a k i d . He was just l i k e having one of your c h i l d r e n around, in spite of the fact that he's the one Ihat'u f i v e 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 s i n i f you were enjoying y o u r s e l f ! 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 t h e i r way of dealing with i t . You can't do anything about that. I t depressed me t e r r i b l y to go v i s i t him and see him doing t h i s , but that's h i s way of doing i t . And i t ' s h i s r i g h t to do i t h i s way. No matter what I think... I: I t sounds l i k e you've always been a p o s i t i v e thinker. l i k e for you i t i s n ' t a chore to be p o s i t i v e . D:  I t sounds  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 . l i f e , and took i t r i g h t on the chin.  He never had an i l l n e s s in his  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 t e r r i b l e thing happen to you in your l i f e before?" She s a i d , "Yes, when I was 10 I was coming home from school, and somebody came out of the house and t o l d me my mother was dead." And he s a i d , "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 s t a r t to talk at the meetings, I'd gone to f i v e , and hadn't opened my mouth. And this meeting they were s h o r t - s t a f f e d , there was just a s o c i a l worker. C.J. used to come to the meetings at that time... This p a r t i c u l a r night there wuu juat N. And this lady from the i n t e r i o u r 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 c l o t h e s . But her face t o l d me volumes. And I thomjht, that poor woman needs to t a l k , and she's never going to get a chance with t h i s dame here. So I turned around to t h i s lady and s a i d , "And you got cancer anyway." And she shut up l i k e a clam. And the nun got a chance to t a l k . . . That worried me so much that I'd done that to that woman so at coffee break, I made a s p e c i a l 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 s a i d , "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 t o l d to shut up, but what worries me most i s that I ' l l say something and hurt somebody's f e e l i n g s . " So anyway, the nun had had a r a d i c a l mastectomy, and she'd been in A f r i c a f i v e years teaching, and she had assumed her cancer was gone. And she comes back to Canada and she goes for a p h y s i c a l , and they t e l l her that the cancer has d i f f u s e d through both lungs, and nothing can be done. Well, she was a b s o l u t e l y 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 p a t i e n t s , because she s a i d , "I've always been a teacher." And she wanted to do something. So he got her v i s i t i n g p a t i e n t s . . . Now, she found t h i s man who was an a t h e i s t , and yet he was doing very w e l l , 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 s k i i n g to Europe, and both of them won honours at the Expo for amputees... Anyway, t h i s 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 t h i s chemo. She had been so nauseated and throwing up, and enough i s enough. And he said, not knowing she was a nun, and I was just s i t t i n g there c r i n g i n g because he turned to her and s a i d , "Have you t r i e d brownies?" And another woman s a i d , "Oh, how about yoga?" Well, S i s t e r G. said, "I think that marijuana i s an assault on the body." And the young fellow s a i d , "I think that chemotherapy i s 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 t r y another one." So she took her chemo... Now, y e a r D 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 s a i d , "You know, I've just l o s t two members of my family with cancer, and I'm wondering whether I should go ahead with t h i s or not. What would you do?" I s a i d , "I can't t e l l you what to do. But for me, i t ' s l i k e swimming across the lake. The f i r s t time you s t a r t you don't know whether you can make i t to the other s i d e . But i t ' s fun to t r y . " So, by God, she kept up! F i n a l l y her cancer went to her brain and she died, but, she was a very big strong help at CanSurmount... Now, t h i s other lady, she is absolutely marvellous. She i s probably the one that I think that i s the best I have ever run into as far as courage goes. She had an aneurism and l o s t her memory for a couple of years. She had three daughters that she had to bring up alone because her husband s t a r t i n g molesting them—mistreating them. And a f t e r she got away from him she had to keep moving because he kept threatening the c h i l d r e n . She had i t r e a l l y 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 s t u f f . She i s home r i g h t now, but she spends quite a b i t of time in the p a l l 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 b i t c h , never... I: Does that keep you going now, doing that kind of work, with CanSurmount, and knowing that you can r e a l l y be of help to people? D: Yeah, I think that i s one of my biggest joys in l i f e i s going to the L i v i n g with Cancer meeting. And j o l l y i n g everybody up! I r e a l l y 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 t a l k i n g about your l i f e to someone, i s there something you could say was the most important thing that you'd learned? D: Yeah, I think I've learned more from f a i l u r e s than I ever learned from winning... Once you find that you can surmount that f a i l u r e , you gain a l i t t l e confidence in y o u r s e l f . 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 p r e t t y good. I could do one thing well. But my youngest s i s t e r seemed more vivacious, and when i t came to my brother wanting to teach us to dance, I was just l i k e a f r i g g i n g log! Just l i k e t r y i n g to move a b a t t l e s h i p ! ! And she was just as relaxed as anything. Well, I eventually learned to dance and did very w e l l . Used to go to the country dances and have a r e a l bang-up time. But although my s i s t e r 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 t r a i n i n g , and I got a l e t t e r from her and I knew things were not so good. It was with h e r s e l f . You see, when she was a pre-schooler, two of my brothers died. One died when he was s i x , and the other died when he was sixteen. With the six year o l d , i t was before they gave innoculations for d i p t h e r i a . And I didn't find out u n t i l my father v i s i t e d 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 o l d , my mother was kept in the h o s p i t a l 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 l i v e with my father's older s i s t e r . And they had f i v e 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 t h e i r boyfriends. They'd pick me out of bed with my nightdress and take me and a l l . Now t h i s I don't remember, of course, but I was t o l d t h i s . So, my oldest brother had wanted a baby s i s t e r 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 s a i d , "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 t o l d me that she had five boys, always wanting to have a g i r l . And then she t o l d my s i s t e r that she got her to keep me company. But that's a l o t of b u l l s h i t ! You don't have seven k i d s . . . I was grown up before I r e a l i z e d 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 p a l s . But we had wooden mallets, and we were d r i v i n g spikes into the ground. And he took my turn, so I just l e t 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 r e a l i z e d that he couldn't  169  suddenly get me back in l i n e . But I wouldn't say I was sorry. So he took a piece of k i n d l i n g and whacked me good. Another time I remember refusing to eat my dinner and I got a damn good l i c k i n g . Now I deserved both of those l i c k i n g s , and i t ' s straightened me out, so that's f i n e . But... what was the question?... I came home from school in grade one, and I had l o s t a f i g h t . 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 l o s t a f i g h t , didn't you? That's the l a s t f i g h t 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 i n Providence, Rhode when he would come home to v i s i t . . . My s i s t e r and I were younger than him. He was five before there was any other we thought of him almost l i k e God. Because he would lean chair and s t a r t bragging, and we believed every damn word said!...  Island. But so much children. So, back in his that he  He brought home these s i x ounce boxing gloves for my brother Art, who, at 18, weighed 195. My brother, Herb was scrawny. The one that's over i n P a r k s v i l l e . Now, when Herb would box with you, he'd l e t you get a whack i n . A r t — y o u h i t him, and you did i t . He told me that a good s o l d i e r never f l i n c h e s . But he didn't t e l l me... I was so stupid. If I had been r e a l l y smart I'd noticed that he shadow-boxed. I set there with my chin r i g h t there ready for him to h i t 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 o l d e r — h e grabbed me from behind and he squeezed me t h i s 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 l e t me dowm, I was black i n the face. Scared him. But he did i t once more before he q u i t . . . 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 t h i s one play he was supposed to be shot, and drop dead. So he'd been p r a c t i s i n g t h i s , and he was explaining to me how you did i t . He s a i d , "Now look. You stand over there, and I ' l l catch you. And the t r i c k i s — I won't catch you u n 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 t h i s same brother, he had a l i t t l e t r i c k he used to show my s i s t e r and I. You take three c h a i r s . You s i t on the one in the middle. You put your head just l i k e that. You put your neck on one c h a i r , 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 t h i s 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 t h i s . Well, my god, he got the chair caught in the rug, and do you think my s i s t e r and I would help him? To h e l l with that! We ran o f f ! ! [...] I've l o s t i t now... Oh I know, I said f a i l u r e s 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 t h i s ripe o l d age, I don't care whether anybody l i k e s me or not! You see, i t doesn't matter. I t ' s b e a u t i f u l to get o l d i n that respect, because as a young g i r l I used to worry about what people thought. And in a small town l i k e S p r i n g h i l l , 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 i n my day to study. The g i r l s didn't sLudy. So I would purposely leave my books i n school and I remember t h i s h i s t o r y teacher... I was the t h i r d seat down, and I looked i n the book l i k e that, and the f i r s t date I had i t . And she comes down and asks the question, what year d i d such and such happen. And she damn near s h i t h e r s e l f , 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 i n my head that I could always do t h i s . This i s what I mean by f a i l u r e . There in nothing wrong with f a i l u r e . 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 i n Montreal, and the three c h i l d r e n 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 c o l l e c t . 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 i n Vancouver. She wanted him i n 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 i n nursing.] The fact that the doctors had so much confidence i n me, that gave me some confidence in myself. And you kind of f e e l that there i s n ' t much that you can't do as long as you keep t r y i n g . . . You know, you don't know a l l about yourself, r e a l l y .  People say,  171  "I don't understand my husband." Shit, you don't understand yourself! 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. Haven't you? Yeah. L i f e i s l i k e that. I:  There's always something to learn about y o u r s e l f .  D: Look, I didn't ask you would you l i k e a c o c k t a i l , or a glass of wine, or what would you l i k e ? We make our own wine, and i t ' s pretty darn good! Now, do you l i k e dry wine? Well t h i s i s dry. Because i t ' s pear, from our own pear t r e e . . . I:  Boy, do you have a l o t of hobbies!  D: Oh, have we ever! Have we ever!! Do you think we're through t a l k i n g on t h i s ? Hey, Stew! [ C a l l s i n husband. We a l l s i t down for an evening drink and snack, and talk about wine-making and r o c k - c o l l e c t i n g for another three hours.]  172  TRANSCRIPT |1  (Case E)  I: So why don't I t e l l you again about t h i s study. I t ' s some research I'm doing out at U.B.C. to f i n i s h my master's degree i n c o u n s e l l i n g psychology. What I'm doing i s going around t a l k i n g to people l i k e you and D. [a freind with cancer; also a p a r t i c i p a n t of t h i s study] and others who have r e a l l y done well. So I'd l i k e 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 l o t a l i k e . And she had been very involved with CanSurmount. S h e ' l l go by bus; s h e ' l l talk to them on the phone. If they want to see her, s h e ' l l go by bus to get out there. She's thinking of other people instead of h e r s e l f . She's been going through treatment and i t ' s raised h e l l with her! But she's thinking of somebody else besides h e r s e l f . Now I finished my treatment in January. Nick had open-heart surgery the t h i r d of A p r i l . Now he was i n the h o s p i t a l for two weeks before they operated on him. So i t was—bang! b a n g ! — s o r t of thing. I had to think of him... When you see some of the others who are just worrying about t h e i r own sickness, their own s e l f , that just s i t there... Well, you read these books... Getting well again i s one of them. Go in a room and just say to yourself, "The cancer i s going. The cancer i s going." You're s t i l l thinking of cancer... I don't think that's the r i g h t approach for a l o t of people. I: Well, for you, your husband was r e a l s i c k . So you were thinking about his health. And when he came back home from the h o s p i t a l , 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 t r u t h , I was quite happy when he went into the h o s p i t a l ! 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 t r a v e l l i n g on the buses to v i s i t him i n the h o s p i t a l . 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 h o s p i t a l , 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 r i g h t 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 f e e l i n g around on the f l o o r for h i s glasses. He l o s t his glasses, so where's mine? And no h a i r ! They're i n 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 i n a hurry! Poor o l d Chrissy and Glee, they f e l t h o r r i b l e about i t . People seeing me out i n p u b l i c . 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 l o s i n g her h a i r . She's only got a l i t t l e b i t 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 c a r e f u l so i t wouldn't hurt coming down the s t a i r s , and she tripped and broke her hip. Well, they took her to the h o s p i t a l in am ambulance. Stew phoned r i g h t away to say that D. was i n the h o s p i t a l , that she'd broke her hip. He didn't think to put her wig on. She went to the hospital without any h a i r . So of course we saw her without any h a i r . So she s a i d , "To h e l 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 t i n t e d ! So she just makes fun of i t . And t h i s 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 b i t about what happened with you i n the beginning, and then we can follow that through to get a better idea of what changed i n your l i f e since the cancer. E: I went i n for a gallbladder operation. October '81. The doctor who did the operation... I came to, I f e l t miserable, of course, a f t e r an operation. Nick would come up and see me. And the kids. Nobody said boo. Poor o l d Nick had to keep i t i n . Put on a cheery face and come up and see me. Because the doctor told him on Friday that he was quite p o s i t i v e i t was cancer. And he couldn't say anything, because he t o l d 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. I t was the family doctor that come i n on Monday morning and he says, "I hear you've had a rough time of i t . You've got cancer. I t ' s a fast growing one, and you've got three to s i x months to l i v e . " And he turned around and tore out. Didn't walk out, he tore out! I: Took o f f 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 it... When he said three to s i x 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 l a t e r , at night time. He brought the papers for me to sign. I t o l d him to get the h e l l 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 t o l d me, "Quit l y i n g around f e e l i n g 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 i s 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, " I f grandma i s in pain, t e l l her to get some marijuana and smoke i t . " Now that was a sixteen year o l d ! 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 s a i d , " I f you want marijuana, just go down to the l a d i e s ' restrooms." Women were going in there and smoking. You could smell i t ! I:  So that was before they were a c t u a l l y prescribing i t .  E: Right. They couldn't t e l l me to go and do t h i s , but they t o l d me where I could f i n d i t . That was the old old c l i n i c . This one now, they prescribe i t to people... This i s the d i f f e r e n c e 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 l i k e to t r y 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 l a t e r , i n the paper, we saw t h i s 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 t h i s new treatment for lymphoma, and i t was working. I: So that was the one that they used for you. It was system then? And i t started in your gallbladder?  in your lymph  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, r e a l l y , anybody else with pancreatic cancer, bone cancer, the d i f f e r e n t places, would have been on i t . But t h i s treatment worked. And i t came out four and a half years l a t e r . 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 i s causing i t to change. And they figure they've got the cure for cancer. If t h i s 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 . had the t r a i l e r beforehand. But now we never stay home anymore.  Now  we  I've taken up doing c r a f t s . 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 d r i p . And I had to s i t there and wait u n t i l i t dripped through. Somebody was in there making a pair of skates. Crochetting skates. And using paper c l i p s for the blades. I should do that! As a r u l e , 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 e l s e . Always do something d i f f e r e n t . So, while I was s i t i n g in there making these skates, I'd hand them to the nurses as I f i n i s h e d . Crochet a l i t t l e booty, just about so b i g . 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 h o s p i t a l , a l l the nurses and that. And when my doctor came to me when I was doing them, and s a i d , "Look i t ! A l l my nurses are wearing skates. They say you do them. Where's mine?" So I made him a p a i r . I r e a l i z e 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 s o c i a l 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 i s 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 l i k e t h i s  176  time? Am I going to be sick? And before I l e f t that room, they were a l l I d l k i i K j Lo each other and smiling. Because I had been there before them. I:  Would i t have been d i f f e r e n t 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 b e l i e f that i t could be d i f f e r e n t for you than i t was for your mom... E: Yes, w e l l , i n those days there wasn't too much hope for anybody that had i t . But seeing D., a l i v i n g walking person for 15 years or so that she'd had i t , and she'd gotten b e t t e r . Then why can't I? And a good example... As I s a i d , I l o s t two brothers a f t e r I got it. One fought. He was down in C a l i f o r n i a . But they didn't give him the name treatment as I had. The one i n Vancouver, he had prostate cancer. Which was, at that time, a 95 percent cure. He took to h i s 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 t o . Look at me!" But I couldn't get through to him. He curled up and three months l a t e r he was dead... I: So what would have been the d i f f e r e n c e between him b e l i e v i n g he was going to d i e , and you not b e l i e v i n g that? E: Well, I wouldn't say i t ' s not b e l i e v i n g altogether. Because i t ' s s t i l l i n 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 i s something that i s 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 w i l l i n g to talk about i t , not hide i t . Which a l o t of people do. And e s p e c i a l l y foreign people. Now there i s a lady, she's r e t i r e d 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 d i f f e r e n t n a t i o n a l i t i e s and d i f f e r e n t ways you have to treat them. The East Indians, you go to the son's wife, f o r anything that they have to know, because the daughter-in-law i s always the one who looks a f t e r her mother-in-law. The Chinese, with t h e i r y i n and t h e i r 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 j u i c e . This was to replace the blood that they had to take out of them. And i t worked. So, learning a l l the d i f f e r e n t things that w i l l help people makes the biggest difference i n the world. To t r y and make them r e a l i z e that i t i s n ' 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 l o t l a t e r on down the road... But since then I've taken  177  to c r a f t s . I:  To h e l l with the housework!  I ' l l get i t done...  ...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 f l o o r s . When my great-grandchild comes, his knees may be d i r t y from crawling around on the f l o o r , but I'm not worried. If i t don't get done, i t don't get done. And I do my c r a f t s instead. My husband's going to r e t i r e so we can t r a v e l . We look ahead... He's r e t i r i n g in October, but he turns i n 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 s i c k , i f there's a r a l l y on, we go. He takes a Friday o f f . So i t gives us a long weekend. And since both of us have been s i c k , t h i s i s 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 i n the club for 13 years. But now we both take off i n the club. We're more involved in pleasure than in getting ahead. The almighty d o l l a r don't mean that much to either of us. And through the club I've talked to an awful l o t of people that have had cancer. They a l l know that I've had i t . I've never t r i e d to hide i t or anything e l s e . 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 l i k e that before?  That kind of helping person before?  E: Well, not so much. My family meant a l o t to me. My house meant a l o t to me. And sure, I l i k e d to get involved in things. Before I moved into town a f t e r Hansel died, I was in Women's A u x i l i a r y 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: I t ' s almost as i f your family's become a l o t larger now. Your family's almost everyone that you get i n 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 i s 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 l i k e t r a v e l l i n g . We've got that t i n can [mobile home] out there. We're involved with more people. Sure, we keep i n touch with the k i d s . Like for the granddaughter, I made her wedding cake. And, the younger son, he was divorced, and he got married again l a s t J u l y . They came over here, the two of them, I guess about March or A p 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 e l s e . So she says, "When would you be back?" And I says, "The soonest we can be back i s the twenty-second of J u l y . " I t was a Saturday. So, a couple of days later they came back over. And she says, "Do you r e a l l y 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 o f f to the following weekend." We come back around the Thursday, so we'd be back before t h e i r wedding. I: Would you have done that before? Would you have s a i d , "These are my plans. This i s what i s important to me"? E: No, no! I'd have given up the holiday for the kids. But not anymore. They've got t h e i r l i f e . They've got their f r i e n d s . They don't worry what I'm doing. The younger son and Deborah, they pop i n a l l the time. Because I t o l d them s t r a i g h t out that I was doing what I wanted to do. So i f they want anything with us, they l e t 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 f i g u r i n g 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 f o r Chinese dinner. And they were i n v i t e d , too. So I says, "Why go to the fuss in the morning, when we have t h i s b i g do at nighttime?" I c a l l e d that one o f f f o r her!... But I have been more involved with c r a f t s and doing things now that I never d i d before. I k n i t , and I crochetted before, but i t was more for the grandchildren or things l i k e that. Now, I do what I l i k e to do, and a l l these new things that I come up with. That's going to be a t u l i p . This goes for candles. That's a t u l i p . . . So I've got my c r a f t s , 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 t h i s at Beausman l a s t year. Hyacinths. Do you know what i s ? It's rings from pop cans. And t h i s i s coathanger wire. And we're stopping p o l l u t i o n 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 l o t of the people over there. I asked one of the ladies how many women employees d i d 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 t h i s great big box of things. Nick's boss gave him time o f f to come over and pick me up and go up to the h a l l before four o'clock. And a l l the women got one! A l o t of them s t i l l had t h e i r skates on, wearing them, when we went up t h i s year... So i t makes you f e e l good, doing something for somebody e l s e . And t h i s I think i s the main thing as far as people are concerned. Get your mind o f f yourself and your cancer! I t ' 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 f e e l i n g s i c k , and you don't have much energy or anything. I had to keep my hands busy. Because my fingers a l l peeled. My n a i l s 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 d i a l e d . And just s i t there and t a l k . I t was a challenge to figure out how I could do these things and be independent. And I think that goes for a l o t of cancer patients. If they're not thinking of themselves, they're a l o t better o f f . I: Did your ideas change on, know you, why people have such hardships, or why there i s 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 t a l k i n g one day, and they says, Carl says, "You know what I'm going to die from? Cancer." I says, "How i n the h e l l 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 f o r trouble." But that i s the f i r s t question you ask: "Why me?" Even though you know i t ' s i n the family. I: What do you do with that? Do you then just sort of put that behind you? How do you l i v e with that day to day? E: It i s hard to l i v e with, day to day. And i f anyone i s hovering over you, i t makes i t that much worse. Like when I t o l d you when Stew t o l d D. she was stupid, that's the day she f e l t she was l i v i 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 l i v e your life. You got to enjoy your l i f e . Happiness i s more important than  180  anything e l s e , than having money... Now we're going to move over to a mobile home park when he r e t i r e s . And we're waiting for the self-owned property and that. We went over and v i s i t e d t h i s 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 s a i d , "I think she's had cancer. But I'm not sure." So, we're s i t t i n g there, t a l k i n g , go out and tour the place, and I says, "Oh, by the way, d i d you have cancer?" I:  Just l i k e that! Just out of the blue!  E: Why not?! Well, I s a i d , "Frank t o l d 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 f r i e n d s . . . I've l o s t a l o t 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 g o l f i n g 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 t h i s i s why I figure, mobile home. Both of us want i t i n 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 i s important. Not money, not homes. You are y o u r s e l f , instead of t r y i n g 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 a l i v e . . . Carl was going i n for an apprenticeship with B.C. T e l . Their rent was going up. Ours was going up. Nick has an o f f i c e job. Well, he's a parts man, garage parts man. His wages were not that b i g . 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 h i s f i r s t wife. They started out with just the one k i d , and Linda had two, and she was expecting her t h i r d . They s l e p t i n 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 t i n y 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 b i g bucket. Put the diapers i n to soak. After breakfast, washed them up, put them up on the l i n e . 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 b a l l with t h i s 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, private space?  more of a  E: Right... Once you get over the shock of the cancer, and your treatment, the you l i v e 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 i n and hear a l o t of the people, and t h e i r 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 t r y to take for yourself. I: Is i t d i f f e r e n t now for you than i t was for you before? Because before you were s t i l l giving of yourself i n 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 i s the d i f f e r e n c e that I've seen with a l o t of them. Like D. i s f i g h t i n g cancer again, but she i s s t i l l giving to others with cancer. She i s very, very involved. She gets so mad at the [Cancer] Society for breaking up the thing! But how I got started in with that i s I found a pamphlet for CanSurmount i n 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 [ l a s t ] name used Lo be F. So seeing t h i s M. F. i n there... I got Nick to phone her. We've had a l o t in common since... Now with the cancer patient, once they get over the shock and the main l o t of their treatment, then there's a big world out here! Let's look... I: Would you say you have more goals i n l i f e now, things that you want to do more now?  or are there c e r t a i n  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 f i n e . 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 l i v e 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 t h e i r problem.  And Nick has changed the same way since his open-heart surgery. We're w i l l i n g to go out instead of just the two of us walking down the road hand i n hand, and doing things just with our family and r e l a t i o n s . 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 f a r . 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 t h e i r 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 t r a v e l l i n g , her and Stew this l a s t while, than what they'd done before. They're going away in February for s i x weeks. Bus tour. She's been to C a l i f o r n i a 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 t h i s i s what ours i s going to turn out to be when Nick r e t i r e s . 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 l i k e 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 l o t of ways. Our ideas are the same now. We'll go at the drop of a hat! He's taken e a r l y retirement. He's got five years to go before he's 65, but he's q u i t t i n g at 60... When we were t a l k i n g about t h i s one [ r a l l y ] at Notre Dame—a year ago we were t a l k i n g — " A h , 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 r e t i r e ? " That's a l l i t needed! We set the b a l l i n motion. He says, "Do you think we can manage?" I says, "Why not?" So he put his name in to r e t i r e . I: Is that going to be a p r e t t y big change for him? p r e t t y much focused on h i s work?  Is his l i f e been  E: Ah, yes... He i s g u l l i b l e in l o t s of ways. E a s i l y lead. There's another fellow in the club that had two bypasses. He had four. This fellow said the doctor t o l d him that the bypass surgery only l a s t s 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 h e ' l l be a l o t better when he f i n i s h e s with the job. Because, well he and his boss get along b e a u t i f u l . But the other foreman in there figures he's a servant in l o t s 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 t h i s made him a l i t t l e b i t . . . When I f i r s t met Nick he was b i t t e r over t h 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 p r i n c i p a l down at V.V.I. And they t o l d him that he was the top of the c l a s s , but they would never be able to place him a f t e r 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 o f f a short p i e r . 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 p r i n c i p a l . Why didn't he t e l l him a year ago? So, I gave Nick a month. We were i n a great b i g house by the General Hospital. And I took students in then, because Nick went back to school. And I had C a r l 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 h i s own, because we weren't married then. And I turned i n the notice that I wasn't going to have the place anymore, and I t o l d 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 i n work.] We've both had sicknesses. We've both had a rough l i f e . Because I'd met him about a year a f t e r 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 s t i c k to my convictions. I w i l l watch... I'm not b e l l i g e r e n t 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 t h i s k i t e - f l y i n g 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 s i z e once in awhile, because I've b u i l t him up so much. Now i t ' s a l l , " I . . " But I t r y to do things i n a p o l i t e way. I: Is that d i f f e r e n t ? Would you have not done that before? have just sat there and stewed i n your seat?  Would you  E: Right! I'd sat there and taken i t . And he i s the same. You do i t in a nice way when you're out i n company. But we don't argue at home. And he i s very h e l p f u l around the house... [Talk about husband's support during E's stay i n 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 t h i s hadn't happened to either one of us, we wouldn't even have thought of taking o f f 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 t h e i r time together, rather than going for the f i n a n c i a l s e c u r i t y in working longer.!... Oh, some of the younger kids that have had cancer. I t ' s r e a l l y rough going. Getting into my age and D.'s age, we've l i v e d most of our life. And we've had a good l i f e . And a long l i f e . And of course we hate to say t h i s i s 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 r e t i r e maybe in f i v e 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 w i l l s out. We t o l d the kids, "When we go, y o u ' l l have the house or something l i k e 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, a f t e r they have got over the treatment, as each day passes... I'd l i k e to see you come to L i v i n g with Cancer. And just l i s t e n to the s t o r i e s . A l o t of people, when they f i r s t come i n , they're down in the dumps, which i s 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 f o o l around and everything e l s e . They've got a s i x year old son. They've taken the son up, to show him where daddy's going to be in the h o s p i t a l . They know Don's going to lose his hair with the treatment he's going to be g e t t i n g . So, they're having a h a i r - c u t t i n g party. The son's going to cut daddy's h a i r ! 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 i s a Supreme Being, and He i s the only one that knows when you're going to d i e . We're not church people, but there i s a b e l i e f there. And he must have more work for me, or I would have been gone.  185  I:  Has that b e l i e f gotten stronger through your i l l n e s s ?  E:  Yes. There i s some purpose to s t i l l being here.  Now, I know when we had to move out of Woodfibre a f t e r Hansel died, there was a couple, he had r e t i r e d from Woodfibre, and I went to v i s i t them a l l the time. Now, he had l o s t a l e g , 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 f e e l i n g 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 i s the same. H e ' l l talk to the f a m i l i e s . 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 d r i v e s . And we both see them... [Talk about t h e i r teamwork i n v i s i t i n g cancer patients and t h e i r families... ] [Talk again about the c r a f t s that they're both now doing together, and trading c r a f t 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 i s a waste of time... I:  ...and scrubbing your f l o o r s !  E: Right on! You know, I came home a f t e r my operation, when they l e t me home for the f i r s t time. I got down on my hands and knees and scrubbed the kitchen f l o o r . Because to me i t wasn't clean. I t 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 o r d i n a r i l y . I'd done i t before, down on my knees. Not a spongemop around the house. Now I've got two d i f f e r e n t mops! And i t ' s not done perfect. I don't care! And Nick doesn't worry too much about i t . Every once i n awhile some of h i s family comes and i f I haven't cleaned up enough, he might get busy. H e ' l l get i n and help... Housework i s not that important... So to heck with i t ! [Tape ends here. E. i n v i t e s me to stay for lunch and continues t a l k i n g c a s u a l l y about her l i f e over the next hour and a h a l f . l  186  TRANSCRIPT II  (Case F)  I: I'd l i k e to i n v i t e 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 l o t s 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 g e n e r a l l y are. So you ask me whatever question you f e e l l i k e . I: Okay. I'd l i k e 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 t h i s , 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 about having cancer.  found out  F: I was getting some pains which were obviously serious. I thought they were u l c e r s . They were upper abdominal, burning, bad burning pains. Regular, systematic. I think my f i r s t concern was, how long i s t h i s going to take? How long w i l l I be o f f work? I had p r e v i o u s l y 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 t h i s prospect that man i s sent, women, people are sent on t h i s earth to t o i l and labour. And you work to a c e r t a i n goal. You work to achieve the greatest monetary advantage as well as to achieve the highest s o c i a l 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 r a i s e ! And i f you do have a break i n 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 i n l i f e today have ever worked at what they r e a l l y have wanted to do. I wouldn't say more than f i v e 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 p o s i t i o n I found myself i n — a s a father with two small c h i l d r e n — I d i d . I didn't  187  look around and say, "I don't want to be working in an o f f 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 w i l l i n g to s a c r i f i c e . So, I don't think that what you do i s too important. You may have yearnings to do something e l s e , but i f you are able to do anything well, you're going to do anything w e l l . 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 c e r t a i n l e v e l of our a b i l i t y . I f you have an a b i l i t y to get ahead, you get ahead in any sphere. I'm a b s o l u t e l y sure of t h i s . So, these were my concerns when he t o l d me I had cancer. I'm not a stupid man. I knew before t h i s happened... So when he t o l d 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 o f f i c e r ) solves my money problems. I'm now going to a doctor. "You solve my medical problems!" I have great f a i t h i n the medical. I'm a l i t t l e b i t c y n i c a l about them now, but I had great f a i t h in them, then. I mean, a doctor, he can s t i c k a knife i n you, and you l i v e ! But i f I s t i c k a knife i n you, you die! I t ' s as simple as that. I never was, at that time, I never was p e s s i m i s t i c about my prospects for s u r v i v a l . And when I came through the operation, which was a very, very d i f f i c u l t operation. I t ' 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 i s extremely d i f f i c u l t as w e l l . I didn't have any doubts about my a b i l i t y to survive. Because r i g h t up to that time I was playing soccer r e g u l a r l y i n a league, p r a c t i s i n g i n 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 r e a l bad time at work. I kind of got i n t o . . . I think the A and the B personalties may come i n here. I got r i g h t between a power struggle between fractions i n the operations where I worked, tugging t h i s way toward people wanting me to side with them, and going t h i s 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 c e r t a i n idea. Getting right in the heart of a c i v i l war for people who downplayed my ideas because i t propagated t h e i r opponents. I t was a r e a l 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 t h i s , I can t e l l you exactly what caused i t , the cancer. Three years e a r l i e r , in 1976, I had t r i e d to give blood to the Red Cross. I d i d 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 s a i d , " I ' l l take some t e s t s . I ' l l c a l l you when I get the answer." Well, a f t e r s i x months he hadn't c a l l e d me, and I f e l t better. But he sent me to a hematologist, and I didn't hear from him e i t h e r . And i t transpired that the p r o b a b i l i t y i s that I had a duodenal ulcer then. Over three years up to the time that these i n t e r n a l problems were happening, they suspected that t h i s turned into cancer. This i s 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 s t r e s s , the ulcer would probably have not progressed to anything. With the s t r e s s , I think probably any l e s i o n 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 f i n e . She expects normal things from me and I expect normal things from her. And I think normality i s what we're looking f o r . Throughout your l i f e . . . you're not starry-eyed about anything a f t e r a l i t t l e while, a f t e r the f i r s t f l u s h of love. But there's much more to a r e l a t i o n s h i p . 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 s t r e s s f u l s i t u a t i o n s any longer. I avoid s t r e s s f u l s i t u a t i o n s . 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 s t r e s s f u l s i t u a t i o n s we usually create ourselves. My wife i s non-stressful. She has a marvellous knack, l i k e 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 o f f . Whereas most dogs, e s p e c i a l l y the males, i f you do t h i s to them, then they're at each others' throats. That's one thing that I've learned very strongly. Avoid s t r e s s . Not because stress i n i t s e l f i s dangerous, but because i t ' s so much easier and i t ' s so much more e f f e c t i v e to avoid s t r e s s . The s t r e s s f u l person never wins... And going on with this story, i t ' s r e a l l y a medical story from then on... The surgery was ten years, two months ago. January 2, 1980. And then in A p r i l , 1980... They take a test every weeks. I t ' 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 i s a strong i n d i c a t i o n 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 i s the essence of cancer. He t o l d me t h i s , and said, "Okay, we're going to do a couple of scans on you." And a f t e r a long struggle to get into the cancer h o s p i t a l , I went along to see Dr. S. at the cancer c l i n i c . . . The r e s u l t s 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 s i x months to l i v e " , my notes—and I used to keep l i t t l e notes each d a y — I have i t that he said, "Unless treated you have four to s i x  189  months." But I always remember asking him what treatments do you have, and he s a i d , "We don't know." Because a l l chemotherapy i s a matter of experimentation. They t r y and t r y to f i n d what for you i s the strongest that you can t o l e r a t e without doing you i n . It's a race! It's a wonderful race, i f you think of i t . Some human involvement i s required to make decisions on t h i s . It's an enormous r e s p o n s i b i l i t y for these people... The only thing that happened to me i s that p h y s i c a l l y 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 t o l d me that... And i t ' s happened several times since, because several times I have had problems, s i m i l a r problems. And i t only happens at that time i n my l i f e . . . Now I've been p h y s i c a l l y a f r a i d during war a c t i v i t y , without t h i s happening. Perhaps because you are involved, you are a c t i v e , you are thinking, you are operating. There i s something you can do. You're not just s i t t i n g p a s s i v e l y and having t h i s 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 i s that I wonder what he can do for me. I wonder what there i s that can help me. Never once that I can r e c a l l , I never l o s t 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 t h i s , because I can't r a t i o n a l i z e my thoughts... I think people might say, "I thought I was going to d i e " because people d i e of t h i s , i n e v i t a b l y , or there's no cure for i t . But I had no l o g i c a l reason f o r thinking the way I d i d . And at other times that my l i f e has been i n danger, I never looked for logic then e i t h e r . 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 t h i s , and I know myself, I'm the c l a s s i c person that sees that a half b o t t l e i s h a l f - f u l l rather than half-empty. Whenever I think something i s remotely possible I go for i t . If I've got 15 minutes to get to the f e r r y and I know the f e r r y goes i n 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 p i c t u r e s . 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 d i d i t . And I was just bringing the ladder away when the car came up. But I've often thought t h i s a b i l i t y to extract the absolute maximum from a s i t u a t i o n i s perhaps one of the ingredients. I never give up! I:  Do you think there i s 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 t r i b u l a t i o n s that go with t h i s . Abandonment. And I have never f e l t that t h i s detracted from what I was worth i n any case. Whatever I am I would have been regardless... But I never, never, never f e l t I could blame t h i s . I think I am what I am because I am, and not because of any outside influence. I'm convinced of t h i s . 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 t r a i n i n g or necessity become s e l f - r e l i a n t , in more ways than p h y s i c a l l y — e m o t i o n a l l y , 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 w e l l . I'm a gregarious and noisy, t a l k a t i v e person, as you can see. But i f you aren't brought up t h i s 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 t h i s detracts from l o t s of the prospects you have of s u r v i v a l i n any other s i t u a t i o n in your l i f e . I: So that s e l f - r e l i a n c e would come through i n work, i n r e l a t i o n s h i p s , in f i g h t i n g a disease...? F: I think i t comes through i n everything. And I don't know whether you can t r a i n s e l f - r e l i a n c e , but I do know you can get along without an awful l o t of things and you can survive. Just the other day I read that one of the s u r v i v a l f a c t o r s , i n prison camps, i n 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 e a r l y 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, e s p e c i a l l y emotionally, they don't hurt us and they don't worry us much as perhaps they do people who have been closeted, and c a r e f u l l y protected. And I've often thought, i f we were a l i t t l e b i t tougher with our kids, not so protective of them, that t h e i r chances of s u r v i v a l when they need i t might be enhanced. And I have a f e e l i n g that t h i s i s 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. E s p e c i a l l y 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 s u r v i v a l i s 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 c a 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 e l s e . 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 s o c i e t i e s on each side, I often f e e l . But I belong to an organization which i s a l l men. And I'm amazed, and always i n awe of when they're amongst themselves, of the very honourable and moral aspect of their thinking. We are not s e c r e t l y marauders as l o t s of people f e e l that we are... There was far more honour, and far more concern for the fellowman than there was a dog-eat-dog a t t i t u d e . Far stronger... I didn't reach that type of conclusion tat the time]... A l l I f e l t was, t h i s i s a doctor in whom I have f a i t h , I am a person i n need, people do survive, why shouldn't I be one of those survivors? Why shouldn't I catch that f e r r y even though i t should have been gone f i v e 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 p h y s i c a l l y manage. Or i f I'm racing the bus, t r y i n g to catch a bus, I always do far more i n 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 f o r t i t u d e of women. I was able to observe men c l o s e l y , and as groups, i n the cancer c l i n i c . And would observe that down the c o r r i d o r you heard and saw women i n t h e i r lowest moments... There's a huge d i f f e r e n c e between men and women. I was often impressed by how the women handled t h i n g s — t h e i r f o r t i t u d e , t h e i r sense of humour, t h e i r a b i l i t y to just accept l i f e . Men tend to be d i f f e r e n t . Men t e l l me, "If I was t o l d what you were, I would have died on the spot." Men give up more e a s i l y . . . I remember teenage g i r l s , for whatever cancer they have, and they do, because my daughter-in-law had c e r v i c a l cancer a t 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 t h e i r head. Because a female's a female, and a female i s very b e a u t i f u l , regardless of h a i r . We have a thing about h a i r . But to be b e a u t i f u l , a woman doesn't require h a i r . 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 i s much more parlous than men. Women have always had to be protected because they had to be the bearers of c h i l d r e n , and they had to look a f t e r , and they were always subject to marauding and a l l sorts of t e r r i b l e 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 t h i s woman would be laughing her head o f f . People would be saying, "Oh, you poor thing!" "What do you mean, you poor thing? I'm f i n e ! ! 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 i n d i c a t i o n that they held hope. Quite frankly I found these rooms traumatic... There's another f a c t o r . 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 i n one corner. I don't think the men want to huddle i n one corner. I think i t ' s because women g r a v i t a t e towards each other for s e l f - p r o t e c t i o n . And the bonding I think i s closer and t i g h t e r with women. What I'm suggesting i s that women, by bonding together, raise each other. And men don't bond the same way, and therefore they don't r a i s e each other. And i f you get four men i n a room, perhaps t h e y ' l l s t a r t t a l k i n g to each other, but t h e y ' l l be l i k e englishmen on the t r a i n , they won't r e a l l y talk to each other... This i s 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 p o s s i b l e . I think men are brought up to be s e l f - r e l i a n t , e s p e c i a l l y emotionally. They're brought up not to bare their inner f e e l i n g s . We tend to want to put a brave face on. We tend to not want to cry, when crying i s appropriate. We're taught t h i s . . . I don't know whether i t ' s possible to break t h i s so simply. I think i t would have to take a long time of reconditioning before t h i s happens... I would think that women do survive when they have cancers the same way that men have. And men do tend to i s o l a t e themselves... It could be that we are at f a u l t as men for s h i e l d i n g ourselves. And i t could be that you women r e a l i z e that another woman i s your s a l v a t i o n . And that an emotional bonding can be of enormous help... I can e a s i l y understand how women would support and bolster each other's morale, much stronger than men do. You don't hear men t a l k i n g about t h e i r marriage problems, ever. The next thing that you hear i s that a guy you know p e r f e c t l y well for a long time i s suddenly divorced... These are just personal thoughts, observations. I spread t h i s . I talk with people about t h i s . I'm not saying the universe would agree with me... So, I never d i d get the f e e l i n g that I wasn't going to survive i t . I have a f e e l i n g that at my very l a s t breath that I would have the f e e l i n g that I was going to survive. I think I wanted to survive. My boy had just gotten married. They wanted c h i l d r e n . 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 i s our immortality coming up... You and I aren't immortal. Our memory is not immortal. And i f there i s a god up there and i f there i s a paradise up there, that's good, but sometimes I have my grave doubts. I think our own immortality i s what we leave, our influence i n what we leave i n memories, the things we do, for good or bad. I think H i t l e r w i l l be immortal. We'll never forget that b l i g h t e r . . . I: Did you find that you started s e t t i n g more goals, or did you always? Whether i t was seeing your grandchild, and then seeing the grandchild at a c e r t a i n age, and then another goal further along... F: I didn't have those goals in mind before t h i s 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 l i v e 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 t h i s i s 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 i s what I've got to l i v e f o r . " And coupled with that i s t h i s awful thing that I think happens when we say to the poor cancer s u f f e r e r , "Now you l i v e for just one day at a time." My God! Today is a t e r r i b l e time for me. I don't want to go on like this... Instead of saying, "Well what are we going to do next Christmas?" Perhaps you might say, "Winter a f t e r next, why don't we go and do so and so... We've got r e l a t i v e s i n A u s t r a l i a , why don't we go and see them?" And though i t may seem impractical, give the poor s u f f e r e r the prospect that he's got something to l i v e f o r . . . Don't put his face to the wall and say, well, "Live for today, and when today's over, l i v e for today..." "Live for today" i s what you always hear. But don't we l i v e for birthdays and weddings and anniversaries? "Live for the future" i s what I think... Survival i n 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 i s going to go on. And l i f e i s worth l i v i n g when i t goes on. And there is a s i l v e r l i n i n g 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 i n good shape. You can always be in good shape. You can always talk people into optimism. There's a rub-off e f f e c t 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 c r u i s e s . We aren't pressed f i n a n c i a l l y . . . What I say may  be t o t a l garbage for anybody else but me.  Out of  194  the five b i l l i o n people on t h i s earth, I am unique, and what I say could be unique as w e l l . . . But we do l i v e for the future. We always do. We l i v e for the great things... Isn't there an old saying, "The a n t i c i p a t i o n i s better than the r e a l i z a t i o n " ? And I've found, very often, that the t h r i l l of the a n t i c i p a t i o n isn't borne out by the r e a l i z a t i o n . Well, the song says, "Is t h i s a l l there i s ? " Who knows?... I don't know i f we can t r y and be d e f i n i t i v e about t h i s . I think there are ingredients, and there are recognizable ingredients to t h i s . . . I think perhaps, one of the things we have to recognize i s something over which we have no c o n t r o l ourselves, is our own physical makeup. Maybe our d i e t s , which we have c o n t r o l over, but which we're not adequately d i r e c t e d about... And who knows, some of us may be just p h y s i c a l l y 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 i n what information there is about prison camp s u r v i v o r s . . . I wonder i f there are any p a r a l l e l s there with what you've heard. I'm sure that s e l f - r e l i a n c e would be one of the factors, one of the elements of t h i s . Because you have to be able to grub along...  the  [Talk about the need for s e l f - r e l i a n c e to have been able to survive war.]  I think one other factor which I think i s important... My wife is very t o l e r a n t of me. Very supportive. And I think i f you have that buttressing at a time l i k e t h a t — I don't know i f you're a c t u a l l y 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 f a i l 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 t h i s man, t h i s 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 b r u t a l father. He survived t h i s , and he survived h i s 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 t h i s man? What i f you were t o t a l l y dependent on your partner, as l o t s of people are? T o t a l l y dependent, emotionally. What i f t h i s awful trauma h i t 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 s t a b l e . We don't have emotional... Oh, we y e l l and scrap l i k e the d e v i l , but i t ' s r e a l l y kind of safety valve releases. I know when she's i n 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 i s hedged with the idea that with every day that passes we think about things d i f f e r e n t l y . Our reactions are different. Our responses are d i f f e r e n t . Who can say? How can any of us say what might have been? If your l i f e would have been d i f f e r e n t anyway. I f I r e t i r e d at 60, we'd have had i t made by then. But t h i s put a whole d i f f e r e n t fact on our l i v e s . It stopped us dead in our tracks... I can say that I'm a richer person for having had cancer... I t ' s been an i n t e r e s t i n g experience, not an overwhelming one. There's got to be some good coming out of everything... S h a l l we take a break now? I:  Sure, F.  Let's do that.  196  CREATIVE WRITING  (Case  F)  Excerps from short a r t i c l e s written by F. during his i l l n e s s published in a community p e r i o d i c a l .  and  D i f f e r e n t persons handle the news [of a l i f e - t h r e a t e n i n g i l l n e s s ] in a v a r i e t y of ways. Much w i l l depend on an i n d i v i d u a l ' s f o r t i t u d e and courage, e s p e c i a l l y i f buttressed by strong family and s o c i a l support, firm r e l i g i o u s convictions and perhaps most importantly, a basic optimism that, whatever the danger, i t could be overcome. A firm b e l i e f 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 t h e i r wonderful support but encouragement from a l l sorts of acquaintances—from my church, my lodge, my soccer club, my recorder s o c i e t y as well as close and d i s t a n t 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 r e v e l a t i o n . My a t t i t u d e toward d i f f e r e n t aspects of l i f e has changed. Time i s no longer a throw-away commodity. Friendships are not taken for granted. I think I'm more t o l e r a n t than I was, and the knocks that l i f e i n e v i t a b l y brings, don't seem as important anymore. We're f i n a n c i a l l y poorer now but in more ways we are r i c h e r by f a r . L i f e has been good to me.  For various reasons these hard times—unemployment, e a r l y retirement or perhaps d i s a b i l i t y — m o r e and more men are having to stay at home while t h e i r wives go out to work. And with her bringing i n the necessary, there's no way we can wriggle out of d o m i c i l i a r y duties the way we used to when we were putting in the d a i l y 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 i s here—paradise or paupery—the time to make up for a l l those l o s t opportunities missed in the past or to be bored witless now that we don't f a l l under the category of " g a i n f u l l y employed". Inevitably some of us f e e l an awful let-down come that f a t e f u l 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 l i v e s were l i k e a long a i r j o u r n e y — a t high a l t i t u d e and great speed for the most of i t ; the the long, everslowing s l i d e down the f l i g h t path of the f i 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 t r u l y productive during that f i n a l period? Now that we've a r r i v e d and see that great b i g world of need out there, beckoning to us, perhaps for the f i r s t time i n a long while we t r u l y have the opportunity to be " g a i n f u l l y employed".  198  TRANSCRIPT I I  (Case M)  An i n i t i a l recorded interview d i d not turn out, and so a second interview was arranged. The format was d i f f e r e n t , in that more d i r e c t questions were asked of M, based on the i n i t i a l interview and the d r a f t of an autobiography she i s hoping to publish.  I: Well, M., t h i s i s 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 d i d you think?  I: What struck me i n i t i a l l y i n your book, from the f i r s t chapter, i t seemed immediately that you looked at your i l l n e s s as an opportunity of some kind to have have a new experience. Whether i t was being in a h o s p i t a l — y o u ' d never been i n a h o s p i t a l before; finding out about a medical career. A l l the way along even when you started having the surgery on your s h o u l d e r — t h i s was an opportunity to learn how to use your arm in a d i f f e r e n t way... M: Did I go into some of those d e t a i l s about how I d i d a few things? Maybe I should have. I:  You mentioned about learning to type.  How to r e s t 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, d i d I? Perhaps I should mention that somewhere. More changes! Oh dear, i t ' s terrible! I wake up i n the night and think of something I haven't remembered back in 1950-something you know. I had never r e a l i z e d that these things were i n the back of my memory. They say that every experience you've ever had i s in there somewhere. I t just needs something to a c t i v a t e i t . This activated a l o t of mine. I t ' s r e a l l y been i n c r e d i b l e ! I: What do you think i t was, way back from the beginning, when you were 16, that gave you t h i s p o s i t i v e way of thinking about your i l l n e s s ? M: I have no idea, r e a l l y . 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 i n doorways that are open. To s e e what's inside. P a r t i c u l a r l y in Mexico, that's a wonderful place to do i t ,  199  because there's a l l these b i g walls and b i g doors. I t looks l i k e 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 l i k e Mexico so much! It expresses a l o t of the sort of thing that I like. I just l i k e seeing around corners and nosing, maybe!! But I've always had an i n c r e d i b l e sense of c u r i o s i t y . I've always wanted to know why, and how, and... When I talked about C h r i s t i a n 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 b l i n d l y that t h i s 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 a n a l y t i c a l mind says how i s 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 i s sure that He could. There's something inside me that says, oh yes, i f you can get that kind of f a i t h , I believe anybody could be cured. Of anything. I: And even though you say you don't have that kind of f a i t h , you don't believe that you're going to d i e . 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 f e e l more i l l when I nave the f l u . I f e e l lousy; I've got a high temperature; I f e e l nauseated; I'm f e v e r i s h ; my body hurts; you know that s e n s i t i v e f e e l i n g — y o u can't bear anything to touch you. Your nose i s s t u f f e d up; you've got a headache. I get t e r r i b l e , t e r r i b l e headaches at the back here. That's one h o r r i b l e thing that happened. Whether that's s t r e s s , 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 d i f f e r e n t f e e l i n g towards pain. I must have a very strong, high pain threshold. I can stand a l o t of pain. But as long as I don't f e e l 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 l o c a l i z e d pain? M: Yes, w e l l , l o c a l i z e d or a l o t of back pain. I get a l o t of back pain and discomfort... I think i f your tummy's upset, or you have a sore t h r o a t — t h a t ' s t e r r i b l e . I f e e l dreadful when I have a sore throat, because then I s t a r t getting a fever immediately. I:  Did you feel i l l with chemotherapy?  M: Yes, and the r a d i a t i o n . 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 i n the shortterm, 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 l o t of pains and i l l n e s s e s 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 f e e l 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 c a r r y my arm and I was a l l over to one side, and I couldn't s t r e t c h up s t r a i g h t — I didn't f e e l i l l . I: That's very i n t e r e s t i n g . Something that's very h e l p f u l i n your mental a t t i t u d e . I know when I can't do the things that I normally have been able to do because of an injury, I f e e l as i f I'm not myself. And when I f e e l not myself I f e e l I must be s i c k . And then come a l l the feelings with that. What am I going to do to change i t ? 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 f r u s t r a t i o n and anger. I get r e a l l y annoyed sometimes. Like I'm t r y i n g to hang something on the l i n e . You t r y and hang clothes on the l i n e with one arm. I figure out ways of getting around c e r t a i n 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 d i r t y . And then I get mad, and f r u s t r a t e d , and angry, and I curse t h i s stupid arm... But mostly I manage to do things... Like sometimes I can manage to carry something in t h i s hand when I'm supporting i t in t h i s other one... I: Now to me, that's a p a r t i c u l a r a t t i t u d e of seeing what could be perceived as a handicap as simply a challenge to do something d i f f e r e n t . M: Oh, you know, I started with i t so young. I've l i v e d with i t so long. I've r e a l l y forgotten what i t was l i k e to do i t any d i f f e r e n t . I find myself doing s i l l y things l i k e 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 e a s i l y myself. I forget that they've got two arms and could probably do i t more e a s i l y than I could... I: Do you think you learned any of these a t t i t u d e s 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 i n return. He was just a very good man. I always wanted to be l i k e him, except in one respect only. If you could say he had a f a u l t , i t was that he had no ambition at a l l r e a l l y . . . [Long discusion about her father's work, h i s struggles, his creative genius, h i s death just before the pinnacle of h i s career.]  201  I: So h i s l i f e was r e a l l y oriented toward s e r v i c e , 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 t h i s change from being in the business world, moving from something that was very career-oriented, and was at times u n g r a t i f y i n g . . . 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 t h e i r job a l o t e a s i e r . I was helping them to do something. But at the same time I didn't f e e l that the company p a r t i c u l a r l y appreciated any of my e f f o r t s . I always had t h i s f e e l i n g at the back of my mind that I wanted to help people, and I'm not t r y i n g to sound l i k e a martyr or something... I always had t h i s f e e l i n g 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 i n a business sort of way. And i f 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 r e a l l y got a grasp of what i t should be. U n t i l 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 i s bearing some f r u i t , or somebody i s r e a l l y 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 t h i s f a n t a s t i c r e l a t i o n s h i p with this Guatemalan family. And I know they are s t r u g g l i n g so hard. I f e e l I'd just l i k e to buy a house for them! I f e e l so strongly about them, because I just know they are so hard-working, they are t r y i n g so hard, and they are having so many problems. I mean, there i s no way I could buy a house for Lhcm, f i n a n c i a l l y , and there's no way they would accept i t . That's another thing. They are very proud. They are going to make t h e i r own way. But you f e e l very strongly that you want to do something for them... I: What got you to stay so long i n those jobs where you weren't being appreciated? M: Security. Absolute s e c u r i t y . S u r v i v a l . And the fear that I couldn't get another job without a medical. I mean I d i d t r y . 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  M:  I don't know.  true now? I don't think i n quite the same way.  Because you can  202  even get [ l i f e ] insurance now, which you never used to be able t o . . . People with a l o t of these unacceptable diseases, heart problems and c a n c e r — t h e y can now get l i f e insurance. I guess, i f there's a reasonable prognosis. Events have proved that enough people are s u r v i v i n g . I suppose a l o t of insurance companies r e a l i z e 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 l o t of what kept me working for the same company was I was earning a reasonable s a l a r y . . . In fact, I thought i t was reasonable. It wasn't u n t i l some time I r e a l i z e d how much lower I was being paid than a l o t of my peers. Because of the Devil [a supervisor]... She kept me down, she kept t r y i n g to get r i d of me. She kept o f f e r i n g me— did I want a transfer to New Brunswick?... Sometimes I don't know why I didn't. I guess the c l i m a t e — a f t e r l i v i n g i n the east, I found t h i s climate so much better for my chest, as far as the winter goes... I r e a l l y didn't want to move. But I don't know why I didn't... I: That's a good question. situations?  Why i s i t that we s t i c k with i n t o l e r a b l e  M: I was so chicken. A l o t of i t was my B r i t i s h upbringing, too. I t was a very d i f f e r e n t a t t i t u d e when I came over here... I t was a highpressure s a l e s , American-run sales organization, where everything's r a ! r a ! r a ! and the almighty d o l l a r . When I worked for the same company i n England before I came out here, that was quite an eye-opener. I t was r e a l l y d i f f e r e n t i n England. People used to remark—American company, who wants to work for them? Who wants to work l i k e that? I t ' s too hard. They push you; you're always away; you're always t r a v e l l i n g ; you're always working; you don't have any time for