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The meaning of cancer in a new marriage Barz, Marilyn 2001

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THE MEANING OF CANCER IN A NEW MARRIAGE by Marilyn Barz B . A . , The University of Bri t ish Columbia, 1985 L . L . B . , The University of Bri t ish Columbia, 1988 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS in THE FACULTY OF GRADUATE STUDIES (Departmentof Educational and Counselling Psychology and Special Education) We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA September 2001 copyright Marilyn Barz, 2001 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department The University of British Columbia Vancouver, Canada DE-6 (2/88) 11 A B S T R A C T T h i s study explores the meaning of cancer as experienced by newly married couples. T h e participants were engaged as co-researchers in an attempt to understand this unique experience. In the initial interview, questions were asked to encourage storytelling and introspection. T h e goal of the collaboration was mutually understood to be the creation of stories that w o u l d accurately reflect each couple's experience and illuminate the meaning of that experience. Narrative accounts f r o m the initial interviews were examined and validated by each couple in a second interview. E a c h narrative account was then rigorously analyzed to find themes of meaning, which were compared across accounts. Important themes emerged, g iving new insights into the processes of deconstruction and reconstruction that helped the subjects to survive and make sense o f the cancer experience. T h i s study contributes to the body of research on the subjectively l ived experience of cancer, and in important ways challenges some o f the assumptions in the oncology literature. It is clear f r o m the narrative accounts, for example, that the concept of recovery as an individual , sequential, and finite process does not accurately describe the recovery processes of these subjects, who experienced recovery as an ongoing, l ifelong process occurring within a variety of individual and interpersonal contexts. iii T A B L E O F C O N T E N T S A B S T R A C T ii T A B L E O F C O N T E N T S iii A C K N O W L E D G E M E N T S iv D E D I C A T I O N v C H A P T E R I: I N T R O D U C T I O N 1 C H A P T E R II: R E V I E W O F T H E L I T E R A T U R E 5 C H A P T E R III: M E T H O D O L O G Y 35 C H A P T E R I V : N A R R A T I V E O N E : B R A D A N D E L L E N 50 C H A P T E R V : N A R R A T I V E T W O : G E R R Y A N D L I N D A 60 C H A P T E R V I : N A R R A T I V E T H R E E : N E D A N D T E R R I 71 C H A P T E R VII : N A R R A T I V E F O U R : R O B A N D S U S A N 83 C H A P T E R VIII: N A R R A T I V E A N A L Y S I S 92 C H A P T E R LX: D I S C U S S I O N 113 R E F E R E N C E S 127 A P P E N D I X A : R E C R U I T M E N T N O T I C E 150 A P P E N D I X B : P A R T I C I P A N T C O N S E N T F O R M 151 A P P E N D I X C : I N T E R V I E W P R O T O C O L 152 A P P E N D I X D : S A M P L E T R A N S C R I P T 153 iv ACKNOWLEDGEMENTS The researcher wishes to thank Dr. Norm Amundson, Dr. Bill Borgen, and Dr. David Kuhl for graciously consenting to help in bringing this project to fruition. Heartfelt thanks to my eight co-researchers for sharing their stories. Warmest thanks to Dr. Larry Cochran, always the most erudite, supportive, and irreverent of mentors. Many thanks to friends, family, and cats for love, practical support, and bugging me to finish the thesis. Special thanks to GSLJ and KPP, those computer experts from British Columbia. D E D I C A T I O N T h i s study is dedicated to four very special people: T o m y parents, w h o are both cancer survivors, with gratitude for their love, laughter, and support. T o Gerald , whose beautiful smil ing self was taken f r o m us m u c h too soon by testicular cancer, but whose spirit lives on joyously in m y heart. A n d especially to Eeva, w h o was taken f r o m us by breast cancer, but w i l l always be m y best friend. 1 C H A P T E R I Introduction Cancer as a word and as a metaphor has many meanings, and each individual cancer journey reveals a distinct landscape of meanings. W h e n cancer occurs in the context of a new marriage between two young adults who are just starting out in life, the experience wil l ultimately depend on how these meanings impact their particular journey. In Canada in the year 2001, there w i l l be an estimated 6,350 new cases of cancer diagnosed among young adults aged 20 to 50 years of age, and an estimated 1070 deaths. T h e totals are approximately the same for m e n and w o m e n in the 20 to 29 age group, but considerably higher for women in the 30 to 39 age group. Incidence rates for cancer in this age group have remained stable through 1971-2001, with mortality rates showing a moderate decline. M a l e s in the 30 to 49 age group have the highest probability of dying f rom lymphoma, melanoma, or colorectal cancer, while for females the highest probability is for lymphoma, melanoma, or breast, cervical, or ovarian cancer (all Health Canada, 2001). W h i l e it is true that the experience o f cancer can be one of life's most difficult, accompanied by physical pain and disfigurement, emotional turmoil , spiritual reevaluation, social isolation, personality changes, career obstacles, financial hardship, and loss of sexual and reproductive functioning, it is also true that f r o m the threat o f destruction inherent in the experience can come transcendence and self-transformation. A s the neoplasmic cancer cells appear unbidden in the body, so too can previously unknown and untapped energies and capabilities appear. A s Dreifuss-Kattan (1990) says, "a unique dialectic emerges between illness and health, between despair and new hope" (p. 3). It is a presumption of this study that for young, newly-married adults, this dialectic, embedded as it is in experience and meaning, must be different and unique. It is another presumption of this study that the cancer experience can be said to occur in 2 three broad contexts. T h e first is the sociocultural context, in which social attitudes and cultural beliefs about cancer f o r m the environment in which the experience wil l occur. T h e second is the medical context, which refers to such considerations as stage, treatment type, and cancer site. T h e third is the psychological context, which considers each individual's mental and emotional capabilities and constructs as they relate to the experience. T h i s study is concerned primarily with the third context, although it is evident in the research that the cancer experience occurs simultaneously within all three contexts. T h e fact that the cancer experience of young, newly married couples, including the psychological impact of that experience and the adjustment processes required for its successful negotiation, has not been explored in depth indicates a gap in counselling theory and practice. Narrative accounts such as those in this study can contribute to the type o f in-depth understanding of l ived experience that can support new theories, counselling strategies, and program design and implementation. Purpose of the Study What is the meaning of cancer for newly married young couples? T h i s study w i l l attempt to provide some answers to that question. Certainly the individual experience of cancer and the impact of cancer on spouses and families have been studied, but there has been very little research on the impact of cancer on y o u n g couples who are in the early years of their marriage. T h e meaning of a cancer diagnosis for such couples, c o m i n g at a time when they are just beginning to establish roles and identities within the marriage, work out issues around family , career, and children, and plan for the future, has not been studied or understood. F o r many of these couples the cancer experience represents an extremely traumatic and dissonant event which irrevocably alters their lives and changes the character of their marriage. T h i s study wil l try to understand what the cancer experience means to young, newly-married couples. 3 Rationale T h e literature on counselling spouses with cancer generally presumes a mature, wel l -established marriage. Cancer experienced by young, newly-married couples is a different and unique phenomenon and needs to be investigated. F o l l o w i n g f r o m the above, it is imperative to understand the meanings that young married adults employ in thinking about cancer, as these meanings can have a profound affect on the experience and outcome of the individual and shared cancer experience. M o s t available research on cancer looks at impact rather than meaning. B y illuminating the meanings ascribed to cancer, a deeper understanding is achieved, one which attends to important factors such as age, gender, body image, culture, and family history. Present generations are more l ikely to turn to counselling for help than previous generations. T o meet this need, counsellors need to be familiar with the particular issues that y o u n g couples facing a life-threatening illness w o u l d bring to counselling. Marital instability decreases the chances of successfully adjusting to the cancer experience. Research that sheds light o n how spouses nourish and reinforce the marital bond during the cancer experience can contribute to counselling theory and practice on marital adjustment to Crisis and change. M o r e and more, the holistic approach to health is showing that cancer and other illnesses need to be treated along the entire mind-body-spiri t continuum. B y showing how cancer is subjectively experienced by young couples, this research study w i l l contribute to the growing rapprochement between traditional medicine and the humanistic disciplines. Research D e s i g n T o elicit meaningful case study data, the semi-structured research interview format is chosen so that the participants have the opportunity to tell their stories in sufficient depth and detail. Counsel l ing skills such as active listening, empathy, immediacy, clarifying, and paraphrasing create 4 an environment of respect, trust, and understanding in which meaningful stories can be told. T h e interviews produce qualitative research data in the f o r m of transcriptions f rom the interview tapes. These transcriptions are condensed into narratives w h i c h represent as accurately and completely as possible the stories told by the participants. E a c h narrative is analyzed using techniques of narrative analysis and presented as a narrative case study, which is verified by the participants. T h e researcher compares narratives in order to develop themes, and tests the validity o f the thematic analysis through independent external review. T h e above attention to methodological rigor ensures that the research has the highest possible degree of trustworthiness. In addition, the researcher's counselling and volunteer experience at the B C Cancer C l i n i c and the B C Cancer Society provides insight, familiarity, and understanding throughout the research process. 5 C H A P T E R II R E V I E W O F T H E L I T E R A T U R E Introduction It is only in the last 20 years that there has been a concerted effort to understand the psychological effects of cancer. T h e new discipline of psychooncology has emerged in response to a growing awareness of the importance of theoretical understanding and therapeutic guidance. A n expanding repertoire of research methodologies is being used to study the impact o f cancer f r o m a perspective that values personal and contextual domains of epistemology. O n e research phenomenon which has not been adequately studied, either in theory or in practice, is the impact of cancer on young adults, either individually or within a relationship. Researchers have commented on both the lack of empirical research data on this subject and the corresponding lack of clinical intervention work (Germino et al, 1995; Northouse et al, 1998; Rol land, 1994b). T h i s chapter reviews the literature on cancer and marriage as represented in the most relevant areas of study, with particular attention paid to sources that provide information on young couples between the ages of 18 and 40. Since this research is based on the assumption that meaning is the central organizing concept of human experience, the fo l lowing review views each area of study through the lens of meaning. T h e Biomedical A p p r o a c h Based on molecular biology, the biomedical model assumes that all disease can be understood in terms of deviations f r o m measurable norms. Researchers working within this paradigm have concentrated their efforts on quantitative studies that measure the correlations between marriage and cancer incidence, survival, recurrence, and mortality. G i v e n the diversity of measures used and the limited amount of data available, it has not been possible as of yet to draw any f i r m conclusions about these correlations (Holland, 1998). A l t h o u g h the biomedical paradigm has lost the absolute power and authority it once had, we 6 shall see throughout this review that it continues to be a pervasive influence. T h e Biopsychosocial A p p r o a c h In response to sociocultural trends, increased patient awareness, and influential advocacy in the field (Engel , 1977; K i m b a l l , 1981; Reiser & Rosen, 1984; Silverman et al , 1983), there has been a steady shift away f r o m the unidimensional, nosological approach of the biomedical model towards a more holistic, person-centred understanding o f disease. T h i s new approach, or biopsychosocial model , is premised on the belief that disease can only be understood by considering not just the biomedical indicators but also the individual's psychological and sociocultural influences, which are seen to have a crucial effect on the course and outcome of the illness. In early studies on the impact o f cancer, biopsychosocial researchers tended to focus exclusively on the affected person or "patient", and any effects on the patient's spouse were largely ignored. O n e of the first studies that d id investigate the non-affected spouse ( K l e i n et al , 1967), although not limited to cancer patients, revealed spousal levels of tension and somatic symptoms that were equal to or greater than that of the affected spouse. In the 1970s several researchers (Grandstaff, 1976; K l e i n , 1971; W e l l i s c h et al , 1978; Witkins , 1979) confirmed these findings, and in so doing joined the growing contingent of professionals who thought it important to conceptualize disease as an interpersonal phenomenon. It was not until the 1980s, however, that researchers began to pay serious attention to the impact o f cancer on spouses and other caregivers. M o s t o f these studies focused on the assessment o f spousal adustment to distress, thus showing the continuing influence of the medical community's emphasis on the pathology o f illness. In an influential study by the preeminent researchers in the field (Baider & K a p l a n D e - N o u r , 1984), small samples o f post-mastectomy breast cancer survivors and their husbands were assessed using psychometric instruments to measure their levels of psychological distress. T h e researchers' findings corroborated early studies by showing that the psychological distress and adjustment difficulties of the husband, as measured by the Br ief 7 S y m p t o m I n v e n t o r y , w e r e as s e r i o u s a n d d e b i l i t a t i n g , a n d i n m a n y c a s e s e v e n m o r e s o , as t h o s e o f t h e i r w i v e s . I n the 1 9 8 0 s a n d 1 9 9 0 s , a l a r g e b o d y o f r e s e a r c h w o r k d e f i n i t i v e l y e s t a b l i s h e d that n o n - a f f e c t e d s p o u s e s e x p e r i e n c e as m u c h o r m o r e p s y c h o l o g i c a l d i s t r e s s as a f f e c t e d s p o u s e s ( B a i d e r et a l , 1 9 9 6 ; C a s s i l e t h et a l , 1 9 8 5 ; K e i t e l et a l , 1 9 9 0 ; K e l l e r et a l , 1 9 9 6 ; N o r t h o u s e & S w a i n , 1 9 8 7 ; O b e r s t & J a m e s , 1985) . It w a s a l s o f o u n d that s o m e s p o u s e s m a y t ry to o f f s e t t h e i r par tner 's d i s t r e s s b y a c o m p e n s a t i n g l a c k o f p r o j e c t e d d i s t r e s s ( L e e W a l k e r , 1997 ) , a n d that s p o u s e s m a y u n d e r e s t i m a t e t h e i r par tner 's d i s t r e s s a n d the v a l u e o f s p o u s a l s u p p o r t i n c o p i n g w i t h it ( D a r , 1992) . A l t h o u g h s i g n i f i c a n t c o r r e l a t i o n s h a v e b e e n f o u n d b e t w e e n s p o u s a l i m p a c t t y p e s a n d l e v e l s ( B a i d e r et a l , 1996) , i t is s t i l l u n c l e a r w h e t h e r there i s a n y c a u s a l r e l a t i o n s h i p . In s t u d y i n g p s y c h o l o g i c a l d is t ress l e v e l s , m o s t s t u d i e s h a v e i n v e s t i g a t e d the i m m e d i a t e o r post - t reatment e f f e c t o n s p o u s e s . O f the f e w s t u d i e s that h a v e s t u d i e d the l o n g i t u d i n a l e f f e c t , c o n f l i c t i n g resul ts h a v e b e e n o b t a i n e d . E l l et al ( 1 9 8 8 ) s h o w e d a n o v e r a l l i n c r e a s e i n dis t ress o v e r t i m e , K a y e & G r a c e l y ( 1 9 9 5 ) f o u n d that c e r t a i n t y p e s o f d i s t r e s s c a n i n c r e a s e o v e r t i m e , H o s k i n s ( 1 9 9 5 ) r e p o r t e d a d e c r e a s e i n d i s t r e s s i n b o t h s p o u s e s , a n d N o r t h o u s e et a l ( 1 9 9 8 ) r e p o r t e d d e c r e a s e s i n m a r i t a l a n d f a m i l y f u n c t i o n i n g , m o r e u n c e r t a i n t y , a n d m o r e a d j u s t m e n t p r o b l e m s . T h e latest l o n g i t u d i n a l s t u d y , a l s o c o n d u c t e d b y N o r t h o u s e et a l ( 2 0 0 0 ) , f o u n d s i g n i f i c a n t l y h i g h e r l e v e l s o f d is t ress a n d less s o c i a l s u p p o r t i n s p o u s e s t h a n i n p a t i e n t s , b u t a l s o d e c r e a s e s i n e m o t i o n a l d i s t r e s s f o r b o t h s p o u s e s o v e r t i m e . S e v e r a l s t u d i e s h a v e p o s e d the q u e s t i o n o f w h e t h e r a n d h o w o n e s p o u s e ' s d i s t r e s s a f f e c t s the o ther . It h a s b e c o m e c l e a r that s p o u s a l d is t ress h a s a r e c i p r o c a l e f f e c t , w i t h e a c h i n d i v i d u a l s p o u s e ' s d i s t r e s s t y p e a n d l e v e l c o n t r i b u t i n g to the d i s t r e s s o f the o t h e r ( B a i d e r & K a p l a n D e - N o u r , 2 0 0 0 ; K a y e & G r a c e l y , 1993) . S p o u s a l d i s t r e s s h a s a l s o b e e n s h o w n to b e i n f l u e n c e d b y the t y p e a n d l e v e l o f p e r c e i v e d s u p p o r t f r o m f a m i l y a n d f r i e n d s ( P t a c e k et a l , 1 9 9 7 ; M a n n e et a l , 1997) . G e n d e r h a s a l s o b e e n i n v e s t i g a t e d as a m e d i a t o r o f the d i s t r e s s e x p e r i e n c e d b y c a n c e r pat ients ' s p o u s e s ( B a i d e r et a l , 1 9 8 9 ; H a r t , 1 9 8 6 ; M u r r a y & M c M i l l a n , 1993) . I n a r e c e n t s t u d y , 8 w o m e n reported more distress, more role problems, and less marital satisfaction regardless of whether they were the cancer patient or spouse (Northouse et al , 2000). A s conflicting results have been obtained overall , however, no conclusions on this topic have as yet been drawn. W i t h the increasing acceptance of counselling as an important tool in cancer intervention, many studies have attempted to identify the factors that affect psychological distress and adjustment in spouses (Carter & Carter, 1993; E l l et al , 1988; H a n n u m et al , 1991; Hoskins , 1995; Keitel et al , 1990; Northouse et al , 1998; Pistrang & Barker, 1995). Perhaps the most significant f inding f r o m such studies has been H a n n u m et al's (1991) reporting that interpersonal variables in husband-wife relationships were equally as important or more important than individual variables in the effectiveness of coping with cancer. Other studies with a therapeutic focus have attempted to determine the most prominent concerns of the spouses of cancer patients (Gotay, 1984; Laizner et al, 1993; Northouse & Peters-Golden, 1993; Oberst & James, 1985; Zahlis & Shands, 1991). A m o n g the major concerns revealed by these studies were dealing with fear and the possibility o f a negative outcome (e.g. disfigurement, divorce, sterility, death), helping the affected spouse cope with the emotional effects o f the cancer, managing the changes and disruptions in daily life resulting f r o m the disease, negotiating communication about the disease with the affected spouse, adapting to shifts in dependency and role identity, and coping with anxiety about future child-bearing capabilities. In identifying the spousal concerns discussed above, some researchers have taken the inquiry a step further and classified c o m m o n concerns or stressors according to a unifying theme. L e w i s et al (1985), for example, identified powerlessness, ambivalence, role restructuring, interdependence, uncertainty, and the need for resiliency as concepts that characterized all phases of the spousal cancer experience. M a n y studies have assessed the reactive processes and coping strategies that spouses employ, both as a team and as individuals, in order to negotiate the cancer experience (Baider & Kaplan D e - N o u r , 1988; Dunkel-Schetter et al, 1992; E l l etal , 1988; H a n n u m et al, 1991; Lichtman 9 et al, 1987; Ptacek et al, 1994). Not surprisingly, the majority of these studies have found significant correlations between spousal style and degree of coping, outcome, and marital satisfaction. Ptacek et al (1994), for example, found that the coping style and effectiveness of one spouse correlated with the mental health and marital satisfaction of the other spouse. Although the role of support in spousal adjustment to cancer is a relatively new focus of investigation, it has been established as an area of crucial importance. For the married individual with cancer, it is the spouse who shares most intimately the ongoing process of cancer diagnosis, treatment, and recovery, and the spouse who tends to be the main caregiver in both emotional and practical terms (Barraclough, 1999; Cutrona, 1996; Goldberg & Tull, 1983). A spouse's attitude and behaviour during this time can be, and usually is, a crucial element in how the cancer will be dealt with in the moment and how it will be ultimately incorporated into the couple's marital history. Noting that a spouse is sometimes iatrogenically displaced by a well-meaning professional, Goldberg & Tull (1983) identified five key contributions that the spouse can make: help maintain social support, promote the patient's sense of autonomy, be an advocate for the patient when necessary, encourage communication with family and friends, and facilitate the expression of emotion. It has been well established by researchers that there is a significant relationship between spousal interactions and adjustment to cancer (Baider & Kaplan De-Nour, 1984; Cassileth et al, 1985; Northouse & Swain, 1987; Oberst & Scott, 1988; Omne-Ponten et al, 1995). Feeling supported by a spouse has been shown to be one of the most significant factors in helping marital partners cope with the cancer experience (Hoskins et al, 1996; Lee Walker, 1997); in one study (Neuling & Winefield, 1988), the spouse/partner was nominated by over 90% of subjects as the most supportive family member. It has even been shown that the way a spouse copes with the cancer experience can determine the other spouse's level of adjustment better than that spouse's own coping behaviours (Hannum et al, 1991). The salutary effect of spousal support has been attributed to a positive correlation beween effective caregiving and immune function (Baron & Cutrona, 10 1990). G i v e n the above, it is not surprising that researchers have found a correlation between marital status and quality and psychological adjustment to cancer (Burman & M a r g o l i n , 1992, Fuller & Swensen, 1992; H a n n u m et al, 1991; W e i h s et al , 1999). In a recent study of this phenomenon that employed the Marital Adjustment Scale and two other measures, Rodrigue & Park (1996) found that unmarried adults reported more adjustment difficulties than married adults, and that patients with high marital quality reported less depression and family problems and a more positive health care orientation than patients with low marital quality. Theoretical explanations for the results in these studies have been l inked to either the main-effects model of adjustment, in which support is seen to enhance adaptation regardless o f stress, or the stress-buffering model , in which stress is mediated by positive support (Rodrigue & Park, 1996). A s is evident i n the body o f research work cited above, the biopsychosocial approach to questions about cancer and marriage continues to share with the biomedical approach a preoccupation with assessment, quantification, and deviation f r o m prescribed norms. T h e solidly forged connection between physiology and behaviour remains strong, as in such reductionist views as Moynihan 's (1991) observation that "the influence of cancer on relationships appears to be related to histological differences" (p. 245). M o s t research data is obtained through the use of assessment instruments such as the B r i e f S y m p t o m Inventory, the Mental Attitude to Cancer Scale, the Cancer Behavior Inventory, the D y a d i c Adjustment Scale, and the Psychological Adjustment to Illness Scale. Perhaps the most widely used measure has been the Karnofsky Scale, w h i c h assesses physical activity as an indication of quality o f life. Some research efforts have attempted to bridge the gap between quantitative assessment and qualitative understanding, such as D o m i n o et al's (1991) Cancer Metaphors Test and Pistrang et al's (1997) case-driven analysis o f help-intended marital conversation. In summing up the biopsychosocial approach, it can be seen that the majority of work so far has rested upon the assumption that the primary attribute of the cancer experience is distress. It 11 also remains true that only a small amount of the biopsychosocial research on cancer is devoted to married couples, and none to young, newly-married couples. At the end of the millennium, a comprehensive review of cancer in the marital context (Manne, 1998) found that research in the field had become more wide-ranging, but the main concentration was still on breast cancer. Although certainly such studies yield valuable information with some degree of generalizability, it seems clear that the topic of cancer and its impact on marriage has not been adequately studied. Psychooncology Psychooncology, also called psychosocial oncology, can be defined as the study of "the psychological, social, and behavioral dimensions of cancer from two perspectives: the psychological responses of patients at all stages of the disease and their families...and the psychological, social, and behavioral issues that influence morbidity and mortality" (Holland, 1998, p. 3). Although the profound psychological impact of cancer has been well known for many years, research and intervention have not kept up with medical advances. It has been said that "the most immediately important task of psychooncology is to close the yawning gap between current knowledge and actual clinical care of patients" (Greer, 1994, p. 102). The first studies of psychological adaptation to cancer were conducted in the 1950s (Abrams & Finesinger, 1953; Shands et al, 1951). Much of the subsequent research with cancer patients focused on the etiological question, attempting to establish a link between personality and morbidity. A significant study in the 1960s (Oken, 1961) questioned the fact that more than 90% of doctors did not tell their patients that they had cancer. In the 1970s, psychiatrists established an influential presence in oncology units, providing expert counsel on patient, family, and staff psychological problems. At this time the work of Kiibler-Ross (1970) with dying cancer patients brought a new awareness to thanatological issues in the cancer setting. In the 1980s, as epidemiologists became aware of links between cancer and behaviours such as smoking, alcohol abuse, and overexposure to sun, the focus turned to psychological issues 12 related to prevention, early detection, and compliance with treatment. National cancer organizations began to support psychosocial research, and the new discipline of psychoneuroimmunology undertook an exploration of the relationship between psychology, the immune system, and cancer risk. Psychooncology as a discipline is still heavily influenced by the medical model. Clinical issues, especially diagnosis and symptomatology, continue to be the focus, with the cancer-affected person's caregivers seen as "second-order patients" (Holland, 1998). The family cancer experience is approached from the standpoint of "medical crises", "poor performance of supportive care", "conflict and/or communication difficulties", and "psychiatric symptomatology" (Holland, 1998). Psychosocial issues are seen not from the cancer-affected person's viewpoint but from within externalizing categories such as "pain", "diagnosis", and "terminal illness" (Guex, 1989). Adjustment to cancer is discussed within the context of "the prevalence of psychiatric diagnoses as a measure of psychological well-being" (Tope et al, 1993). Although the importance of the marital relationship to the cancer-affected person's well-being is well documented, most psychooncology texts are cursory at best in discussing this subject. Guex (1989), for example, states that "the role of families, partners, and friends is fundamental", but claims that research shows that "the most important person is still always the doctor" (p. 105). Holland & Rowland (1989), while acknowledging that spouses are "deeply involved and live through the patient's experience vicariously with great intensity" (p. 588), devote more space to parents, children, and siblings of cancer patients. Barraclough (1999) includes a seven-page section on "Partners", but restricts her coverage of the subject to such practical matters as communication barriers, sexual problems, and help for caregivers. In his comprehensive psychooncology text, Holland (1998) includes two perspectives on the role of spouses in the cancer experience. In the section on the psychosocial adaptation of cancer survivors, the author gives statistics for marriage survival after a cancer diagnosis and describes "cancer-related problems" in those marriages that remain intact (Kornblith, 1998). In the 13 s e c t i o n o n the f a m i l y o f the c a n c e r pat ient , the a u t h o r i n c l u d e s o n e p a r a g r a p h o n s p o u s e s , f o c u s i n g o n the " e m o t i o n a l a n d f u n c t i o n a l d i s r u p t i o n " e x p e r i e n c e d as a r e s u l t o f the c a n c e r ( L e d e r b e r g , 1998) . N o t e that i n the s a m e text, three p a g e s are a l l o t t e d to m a r i t a l status as a s t ruc tura l m e a s u r e i n d e t e r m i n i n g m o r t a l i t y , i n c i d e n c e , s u r v i v a l , a n d r e c u r r e n c e . S i n c e m o s t p s y c h o o n c o l o g y s o u r c e s p a y l i t t le a t t e n t i o n to the s u b j e c t o f the s p o u s e a n d h i s / h e r i n s t r u m e n t a l r o l e , i t i s n o t s u r p r i s i n g that v i r t u a l l y n o a t tent ion is p a i d to the u n i q u e s i t u a t i o n o f the y o u n g , n e w l y - m a r r i e d c o u p l e . C a n c e r a n d Y o u n g A d u l t s T h r o u g h o u t the l i tera ture o n p s y c h o o n c o l o g y r e s e a r c h a n d p r a c t i c e , the i m p a c t o f c a n c e r o n y o u n g a d u l t s i s d i s c u s s e d w i t h v a r y i n g d e g r e e s o f a s s i d u i t y . L a m b l e y ( 1 9 8 6 ) , f o r e x a m p l e , i n h i s w o r k o n the p s y c h o l o g y o f c a n c e r , b r i e f l y m e n t i o n s p r e v e n t i o n as the o n l y r e l e v a n t i s s u e f o r the y o u n g e r a d u l t a g e g r o u p . H o l l a n d & Z i t t o u n ( 1 9 9 0 ) i n c l u d e the t o p i c o f a g e o n l y i n s o f a r as it relates to pat ient i n f o r m a t i o n - s e e k i n g a n d t r e a t m e n t c h o i c e . B a r r a c l o u g h ( 1 9 9 9 ) i n c l u d e s a s h o r t m e n t i o n o f h o w y o u n g e r pat ients m a y s u f f e r m o r e d i s t r e s s b e c a u s e t h e y h a v e m o r e to l o s e . H o l l a n d ( 1 9 9 8 ) d i s c u s s e s m a n y p s y c h o s o c i a l v a r i a b l e s i n r e l a t i o n to c a n c e r b u t i n c l u d e s o n l y b r i e f r e f e r e n c e s to a g e . R e s e a r c h s t u d i e s o n the i m p a c t o f c a n c e r o n y o u n g a d u l t s r e p r e s e n t a n o t h e r g a p i n the l i tera ture . E a r l y s t u d i e s t e n d e d to f o c u s o n y o u n g a d u l t s o n l y i n s o f a r as t h e y r e p r e s e n t e d a n o p p o r t u n i t y to assess the p s y c h o l o g i c a l i m p a c t o f p e d i a t r i c a n d a d o l e s c e n t c a n c e r (e .g . G o o g a n et a l , 1979) . I n 1 9 9 2 , Z e l t z e r , d i s c u s s i n g the n e e d f o r " u n d e r s t a n d i n g the p s y c h o s o c i a l s e q u e l a e o f c a n c e r d i a g n o s e d d u r i n g a d o l e s c e n c e o r y o u n g a d u l t h o o d " , c a l l e d f o r m o r e s t u d i e s i n w h i c h t h i s " u n i q u e p o p u l a t i o n " i s the f o c u s ( p . 3 4 6 7 ) . I n a 1 9 9 7 s t u d y , i t w a s s t i l l b e i n g n o t e d that " f e w s t u d i e s . . . h a v e f o c u s e d o n the u n i q u e stresses a n d l i f e c h a n g e s e x p e r i e n c e d b y the y o u n g e s t a d u l t s u r v i v o r s o f c a n c e r " ( R o b e r t s et a l , 1 9 9 7 , p . 16) . In 2 0 0 0 , B a i d e r & K a p l a n D e - N o u r , i n the m o s t r e c e n t o f a n e x t e n s i v e ser ies o f r e s e a r c h 14 studies on cancer and spousal distress, stated decisively that "age and education have little, if any, effect on psychological distress" (p. 47). Many studies, however, have shown that the experience of cancer for young adults may be more stressful than for older adults. Ganz et al (1985), for example, reported that young adults had more frequent and severe psychological problems. Mor et al (1994) found that although younger adults were less physically compromised that older adults, they manifested a lower quality of life and less emotional well-being. Roberts et al (1991) reported higher levels of psychological distress in younger women with gynecologic cancer than in older women. And Vinokur et al (1990), in an examination of age-related distress in specific diagnostic groups of breast cancer patients, found that younger women were more psychologically distressed than older women. Clearly, then, the age at which cancer occurs can be considered a significant antecedent factor which can influence the cancer experience; indeed, Northouse et al (1998) commented that "among demographic variables, younger age has been associated most closely with increased distress following a breast cancer diagnosis" (p. 38). Rowland (1989), in observing that social isolation is a pervasive danger in the young adult age group, attributed this risk to the fact that "the stigma of cancer is often keenly felt in this population" (p. 30). Studies that have investigated the issue further have hypothesized or inferred that certain psychosocial factors may account for the elevated levels of distress in younger patients. Cassileth et al (1984) speculated that older patients may have reduced expectations of wellness and more experience in coping with traumatic life events, thus enabling more effective adjustment to illness. Ganz et al (1985) found that younger adults were faced with more work-related problems and financial concerns than older adults. And Mor et al (1994) surmised that less financial security and more familial demands may compromise younger adults' ability to cope with cancer. Most studies such as the above, however, define "younger" adults as younger than 50 to 65 years of age; these studies, therefore, can be more accurately said to provide research data on middle-aged adults with cancer. Notable exceptions include Cella & Tross (1986), who matched 15 young cancer survivors with age-matched healthy controls and found that the cancer survivors had more marital-, work-, and health-related psychological concerns; Fobair et al (1986), w h o found a high incidence of fatigue-related depression in younger adults, as well as significant levels of marital, sexual, reproductive, and career stress; and Friedman et al (1989), w h o observed that although young adults with cancer experienced no greater levels of loneliness that healthy controls, those who were unmarried had higher loneliness scores than all other subjects. Throughout the 1990s, research on younger adult cancer survivors continued to be neglected. Roberts et al (1997), citing the need for a research-grounded intervention for young adults, studied 46 cancer survivors aged 22 to 35 years, most of w h o m were married or cohabiting. A s measured by three assessment scales, participants rated health/recurrence, having/raising children, finances/security, and future/life goals as their most pressing concerns. Interestingly, the data d id not support previous findings that younger people experience more psychological distress than older people; as the author notes, however, comparability is problematic given the widely differing definitions o f "younger" and "older" that continue to be found in the research literature. A d u l t Development Perspectives A s with individuals and multiple-member families, the dyadic marital relationship is vulnerable to the effects of serious illness on the life course. T h i s marital life course arises f rom its particular history, is guided by shared values and goals, and manifests itself in continuity over time (Weihs & Reiss , 2000). Al though there is no universal model of adult development, several theoretical frameworks are in general use (Erikson, 1968; Levinson, 1986; Neugarten, 1968; Vaillant, 1977). In general, these approaches assume that adults, like children, undergo continuing development through a series of life cycle stages, with opportunities for emotional growth and/or developmental tasks characterizing each stage. W i t h i n the psychooncology field, R o w l a n d (1989) presents a detailed analysis of the adult developmental model as it might apply to young adults with cancer. Defining young adults as aged 19-30 years old, the author discusses developmental tasks, common tumors, altered relationships, dependence/independence, achievement disruptions, body image and integrity, existential issues, and interventions. This thorough treatment of the subject of young adults and cancer, while unidimensional in perspective, is one of the few psychooncology resources to devote attention to the subject. As maintenance of the life course is seen as the preeminent goal, Rowland's approach to the cancer experience focuses on how the experience of cancer is integrated into the young adult's developmental progress. Integration is seen as a function of adaptation, by which such challenges as emotional support and containment, informational needs, communication, practical caregiving, monetary costs, stability, and continuity are negotiated within the social matrix. Attention is paid to life cycle stages, family history, and social organization. Indeed, Rowland sees maintenance of interpersonal relationships as the central challenge for young adults with cancer, maintaining that "the patient's core relationships with intimate friends and relations require special attention" due to the "intense interpersonal and social demands of this developmental period" (p. 31). In spite of the above, Rowland devotes very little space to discussing how cancer and marriage might impact the developmental journey. It is instructive that what she does have to say is couched in far from positive terms: ...the physically healthy partner may seriously question commitment to a person with cancer. Even a close, established relationship is strained because of fear and guilt about the potential consequences of the illness (fatality, disability, and dysfunction). The individual may opt to remain emotionally isolated rather than deal with the real or perceived demands of maintaining [the relationship], (p. 30) Other developmental viewpoints include those of Zeltzer (1992), who observes that an individual diagnosed with cancer in early adulthood must gather the resources to cope with the experience while "accomplishing the tasks unique to this developmental period, tasks such as the accomplishment of economic and emotional independence, capacity for intimacy, solidification of 17 c a r e e r g o a l s , a n d f o r m a t i o n o f a c o m f o r t a b l e i d e n t i t y " (p . 3 4 6 3 ) , a n d S o u r k e s ( 1 9 8 2 ) , w h o c h a r a c t e r i z e s the y o u n g adul t ' s e x p e r i e n c e o f l i f e - t h r e a t e n i n g i l l n e s s as o n e i n w h i c h " the o p e n h o r i z o n s o f the f u t u r e are s h a r p l y d e l i m i t e d " a n d w a r n s that c l o s e c a r e g i v e r s m a y "retreat d r a m a t i c a l l y " o r s h o w " i n a p p r o p r i a t e i n v o l v e m e n t " (p . 2 6 ) . In h i s d i s c u s s i o n o f i l l n e s s a n d its i m p a c t o n c o u p l e s , R o l l a n d ( 1 9 9 4 b ) c h a r a c t e r i z e s the y o u n g a d u l t p e r i o d as the m o s t s u s c e p t i b l e to t r a u m a . S i n c e m o s t i n d i v i d u a l a n d s h a r e d g o a l s a n d d r e a m s h a v e y e t to b e l i v e d o u t , the s e n s e o f l o s s i s a c u t e , a n d " b o t h n e e d to f a c e the l i m i t s i m p o s e d b y the [ i l l n e s s ] i n r e l a t i o n t o e a c h l i f e c y c l e g o a l " ( p . 3 4 3 ) . R o l l a n d a l s o d i s c u s s e s the d a n g e r s o f p e e r g r o u p i s o l a t i o n , n o t i n g that the y o u n g c o u p l e w i t h c a n c e r a n d t h e i r y o u n g a d u l t f r i e n d s c a n e a s i l y f a l l i n t o a pat tern o f r e c i p r o c a l a v o i d a n c e . In h e r e a r l y w o r k o n d e v e l o p m e n t a l t h e o r y , N e u g a r t e n ( 1 9 6 9 ) n o t e d that t h r o u g h o u t h i s t o r y h u m a n theor is t s h a v e p l a c e d u n d u e f o c u s o n c o n t i n u i t y ra ther t h a n c h a n g e . D e v e l o p i n g t h i s i d e a f u r t h e r , G e r g e n ( 1 9 7 7 ) p r o p o s e d three o r i e n t a t i o n s to the s t u d y o f h u m a n d e v e l o p m e n t : s t a b i l i t y , o r d e r e d c h a n g e (as r e p r e s e n t e d b y e p i g e n e t i c m o d e l s s u c h as p s y c h o a n a l y s i s a n d s o c i a l l e a r n i n g t h e o r y ) , a n d the a l e a t o r i c m o d e l , w h i c h p r e s u m e s l i f e to b e a n o p e n s y s t e m v u l n e r a b l e to u n e x p e c t e d , o f t e n a d v e r s e , e v e n t s . A l t h o u g h this d e v e l o p m e n t a l p e r s p e c t i v e , a n d the r e l a t e d field o f c h a o s t h e o r y ( G l e i c k , 1 9 8 7 ) , m i g h t b e p a r t i c u l a r l y r e l e v a n t to y o u n g a d u l t s , n o r e s e a r c h d a t a is as o f y e t a v a i l a b l e . T h e S y s t e m s P e r s p e c t i v e E a c h m a r r i a g e , w i t h its n e t w o r k o f f r i e n d s a n d f a m i l y , r e p r e s e n t s a u n i q u e r e l a t i o n a l s y s t e m ( B e a v e r s , 1985) . It h a s l o n g b e e n e s t a b l i s h e d that a c a n c e r d i a g n o s i s r e v e r b e r a t e s t h r o u g h o u t t h i s s y s t e m a n d o f t e n necess i ta tes s i g n i f i c a n t p s y c h o l o g i c a l a d j u s t m e n t a n d r o l e a d a p t a t i o n ( C a s s i l e t h et a l , 1 9 7 9 ; E l l et a l , 1 9 8 8 ; J o h n s o n , 1 9 8 8 ; L e w i s , 1 9 8 6 ; N o r t h o u s e , 1 9 8 4 ; O b e r s t , et a l , 1 9 8 9 ; P e d e r s o n & V a l a n i s , 1988) . T h e i n t r o d u c t i o n o f c a n c e r i n t o the s y s t e m c a n i n f l u e n c e s u c h m a r i t a l o u t c o m e s as m e n t a l h e a l t h a n d r o l e f u n c t i o n ( B a i d e r & K a p l a n D e - N o u r , 1984) . 18 A s the newly-diagnosed person and his/her spouse and loved ones struggle to deal with the intrusion and make sense of it, the marital and/or family system c o m m o n l y perceives the cancer as a threat to the system (Weihs & Reiss, 2000). E a c h individual sees this exogenous threat differently, but most wil l perceive some possibility of disruption, unknowability, pain, separation, and/or loss. E a c h system member's perceptions, which may change throughout the course of the cancer experience, influence and interact with the perceptions of other members. W h e n challenged by a serious illness such as cancer, most systems react to the threat by trying to gain mastery over the situation (Rolland, 1994a). T y p i c a l l y , coping mechanisms or "regulatory behaviors", chosen f r o m a set of constructs held by each spouse individually and within the marriage, are put into place to deal with changes affecting the system. A t the same time, another set of constructs is at work shaping how the marriage system sees itself and presents itself to the outside world. T h i s latter concept, which has been called the "organizing principle" (Steinglass & Horan , 1987) or "sense of coherence" (Antonovsky & Sourani, 1988), w i l l determine the "delimited number of themes" (Papp & Imber-Black, 1996) around which the spouses wil l organize their marital identity and in turn choose their coping behaviours. H o l l a n d (1998), one of the few sources that treats the subject of the impact of cancer on y o u n g couples as a systems issue, includes this paragraph in his discussion of f a m i l y development stages: T h e newly married couple must create a new system, while still dealing with issues o f separation f r o m their families o f origin. Cancer in one of them may shatter the union, propelling the patient back into dependency on parents, with frequent frictions and a tendency to exclude the spouse. A c u t e problems may arise when the family wants to assume decision-making prerogatives that legally belong to the spouse, (p. 985) Another theoretical perspective has been proposed by Rol land (1994b) with his F a m i l y Systems Illness M o d e l . In this approach, the fit between the psychosocial demands of the illness and the marital functioning style is the prime outcome determinant. Adjustment is seen to take place within three dimensions: psychosocial effects, phase determinants, and marital variables. 19 O n an even more sophisticated level, the threat of cancer to the marital system can be understood within Weihs & Reiss' (2000) model o f the "cancer-related system", based on von Bertalanffy's (1968) seminal systems theory. In the cancer-related system, a hierarchy of cancer-related sub-systems or levels of organization combine to both create and cope with the cancer-related threat. These sub-systems include marital and extramarital relational processes, family legacies o f dealing with illness, cancer type and treatment, and social stratifications such as financial position, religious beliefs, and community status. Attachment Theory Based on B o w l b y ' s (1969) pioneering work, attachment theory, as applied to adults, concerns itself with "the maintenance of a mutually reinforcing relationship with a particular other adult" (West et al , 1986, p. 204). W i t h i n this theoretical framework, marital relationships can be seen as attachment schemas. A spouse with an insecure model of attachment w o u l d expect and/or perceive misunderstanding, criticism, rejection, and so on in response to his/her needs arising f r o m the cancer diagnosis (Bretherton, 1988; Levitt et al , 1994), and w o u l d thus l imit self-disclosure and help-seeking (Mikul incer & Nachshon, 1991; S impson et al , 1992). T h e above pattern o f orientation has been described as an individual's "attachment style", and has been defined as a person's way of relating to an attachment figure who provides "the subjective potential for physical and/or psychological safety and security" (Berman & Sperling, 1994). Attachment processes can also be seen as the substrate f r o m w h i c h other relational processes are developed. In Wynne's (1988) epigenetic model , events of becoming build upon previously occurring events, thus determimining the potentialities of the next phase. Secure attachment processes within this model would include attachment/caregiving, communication, joint problem-solving, mutuality, and intimacy. It can be readily seen that a diagnosis of cancer might affect any or all of these attachment processes. A study by W i l s o n (1991) illustrates this point. M e n whose wives had developed 20 breast cancer reported feelings of intense alienation f r o m their wives but did not share their feelings, thus leading to a kind of "pseudomutuality" in which the appearance of mutuality was maintained but a secure and responsive basis for mutual understanding had been lost. T h i s pseudomutual solution to the challenge o f cancer resulted in an insecure attachment relationship, and thus led to misunderstanding and isolation. Insecure relational processes such as the above fail to provide a "holding environment" in which the trauma associated with cancer can be shared and relieved. E a c h inadequate caregiving exchange then has a cumulative destructive effect on the relationship. It is important to note that even secure attachments can be threatened when disease severity is high (Weihs & Reiss, 2000). M a n y marital relationships, of course, enjoy secure attachment processes, which are activated and reinforced through the sensitive responsiveness o f each spouse to the other. In either case, it can be seen that there is some degree of cancer-related transformation of the marital attachment relationship. It must also be noted that a spouse's working model of attachment wil l influence his/her perception of the degree of commonality of the cancer experience. T h e uniqueness of the experience, along with sociocultural attitudes, can leave even the most well-adjusted individual feeling isolated. T o a spouse with an insecure attachment style, however, this uniqueness can turn into an alienating force, as the spouse with cancer constructs a protective wall to keep out the spouse who "cannot understand" (Rowland, 1989). In summary, it is clear that because the experience of cancer is such a life-altering one, it almost always brings about changes in attachment relationships. G i v e n the need for the safety and security o f support that cancer occasions in most individuals, it would appear that attachment theory could be highly relevant to psychological processes in the cancer experience setting. W h e n cancer occurs in a y o u n g adult marriage, at a time when the attachment bond is not ful ly formed, one might surmise that these changes w o u l d be even more challenging. It appears, however, that this topic has not been investigated. 21 Stage Theories Several oncology writers have theorized that the adaptation process of the cancer patient is best understood as a succession of stages or phases. Kiibler-Ross' (1970) early six-stage model of denial, isolation, anger, bargaining, depression, and acceptance, while designed for the terminal illness situation, has applications to any cancer diagnosis. Weisman (1979), one of the earliest theorists in the area of psychosocial cancer stage theory, postulated four descriptive stages of cancer: the "existential plight" stage, the "mitigation and accommodation" stage, the "decline and deterioriation" stage, and the "preterminality and terminality" stage. Massie & Holland (1989) proposed a three-phase response model, with phase one consisting of shock, disbelief, and denial, phase two progressing into anxiety, depression, anger, and guilt, and phase three culminating in adjustment. Bolund (1990) divided the cancer experience into shock, reaction, work through, reorientation, and survivorship phases. And Sales (1991), like many stage theorists before her, linked psychosocial impact phases to the six sequential biomedical categories of diagnosis, hospital, post-hospital, adjuvant treatment, recurrence, and terminality. As of yet there has not been any work done on how stage theories and the marital relationship might interact in the context of a life-threatening illness. The concept of stage theories has, in fact, waned in popularity, as observers realize that "people who experience chronic or life-threatening disease do not necessarily pass through phases which can be neatly defined" (Little etal, 1998, p. 1490.) Relationship Perspectives The intimate connection between marriage and illness is seen in the familiar wedding vow "in sickness and in health", with its attenuated meanings of constancy, commitment, security, loyalty, and sacrifice. It is probably true, however, that most young couples have not considered what life would be like if a serious threat to life occurred. Although some marriages break up as a result of cancer, most do not (Cutrona, 1996; 22 Kornblith, 1998); in fact, studies report an increase in love and affection after the cancer experience (Swensen & Fuller, 1992) and increased or unchanged marital satisfaction (Laverly & Clarke, 1999). Various strategies have been shown to preserve marital soundness, including open communication, equity shifting, positive attribution, moral obligation, and idealization (Thompson & Pitts, 1992). Serious illness changes the context in which a marriage is situated. The interdependence which previously was viewed as normal and desirable may now be inadequate or oppressive (Cutrona, 1996). A delicate balance must be struck between coping with illness demands, ongoing responsibilities, and relationship needs (Coyne & Smith, 1991). Deleterious effects on communication may arise from misunderstandings and unspoken thoughts (Dunkel-Schetter & Wortman, 1982; Lichtman et al, 1987). These dramatic shifts in the relationship often necessitate the creation of a whole new version of marital relating (Thompson & Pitts, 1992). With some exceptions (Coyne & Smith, 1991; Jaffe & Jordan-Marsh, 1983; Patterson, 1989; Ross et al, 1990) the impact of illness on marriage has not been extensively investigated by theorists. Rolland (1994b) has proposed a normative framework that addresses the special concerns of marriages facing a serious illness or disability. Noting that the subject is a largely neglected one, the author uses the term "skews" to describe the adaptive changes required, as these changes can shift the marital structure out of its usual alignment. Incorporating a comprehensive, multidisciplinary approach, Rolland categorizes the issues facing spouses as "whose problem is it", "boundary issues", "patient-caregiver roles", "togetherness/separateness", "psychosocial recovery", "cognitive impairment", "gender" "sexuality", "belief systems" and "life cycle" (p. 328). He sees intimacy and communication as the two grounding concepts for realigning the skews, and notes that life cycle adjustment challenges will be more evident in the young adult age group than in other age groups. As in the above example, the special psychosocial issues pertinent to newly wed and early marriage couples are almost invariably discussed within a developmental framework. Among more 23 relationship-centred contributors, Newton & Kiecolt-Glaser (1995) considered early marriage from the standpoint of changes in relationship quality, noting that "conflictive interactions" are the central factor in declining marital quality during this stage. Central among these interactions are poor conflict management skills, invalidating interpersonal styles, and hostile communication (Markman & Halweg, 1993). Indeed, it has been found that such socioemotional behaviours are more consistently related to marital quality than are variables such as degree of companionship, marital role performance, or amount of activity involvement (Huston et al, 1986). The theoretical basis for all of these approaches is that adjustment for this marital stage depends first and foremost on successful interpersonal resolution of communication and intimacy issues (Markman & Halweg, 1993; Rolland, 1994b). Lambley (1986) is one of the few theorists who have addressed the question of how marriage type might influence the cancer experience. Three types of relationships are identified: the "status-quo maintaining relationship", the "supportive relationship", and the "radical relationship" (p. 75). In another source that develops this idea, Peteet & Greenberg (1995), discussing marital crises in oncology settings, present the effects of crisis from within a marriage typology framework, dividing at-risk marriages into "the immature relationship", "the hostile dependent relationship", "the abusive relationship", and "the estranged relationship". Existential-Phenomenological Perspectives The courage to endure, and the ability to transcend, an illness such as cancer is often found in the discovery of personal and interpersonal meaning. As Frankl (1984) observed, "man's search for meaning is the primary motivation in his life" (p. 121). Often, however, it is not until an individual is faced with an existential trauma such as cancer that this primary striving is activated. The intimate, unique, and specific meaning that can be illuminated through facing a life-threatening illness "transfers vital significance from the person's life to the illness experience" (Kleinman, 1988, p. 31). For many the search for meaning will converge with an inner dialogue on 24 mortality and a newfound dedication to a purposeful life; for others, the search brings no answers, and thus becomes a struggle to find the courage to live without answers (Attig, 1989). It is these profound questions of experience and meaning that are the concern of the existential-phenomenological approach to the meaning of cancer. Serious illness has a deeply private significance, provoking questions about the meaning of one's existence and creating new layers of phenomenological depth. As Plato observed, "if you want to know yourself, practice dying", for it is thought that only a confrontation with the inevitability of one's own death can provide true knowledge of what is meaningful in life. Life-threatening disease, and the death it portends, have of course been the subject of philosophical, religious, and artistic musings for centuries, but it was not until the 1970s that psychology and sociology turned their full attention to the meaning of this universal experience. Kubler-Ross (1970) brought the experience of life-threatening illness into the mainstream. Lipowski (1970) identified the eight major meanings of disease in Western culture as challenge, enemy, punishment, weakness, relief, strategy, loss, and value. And in their seminal work, Weisman & Worden (1976) established the response to a cancer diagnosis as an "existential plight". In the 80s and 90s, the influence of social contructivism fostered the acceptance of illness and medicine as socially embedded concepts. Kleinman (1988), defining illness as "a transactional communicative experience", notes that "illness meanings are shared and negotiated". Such socially constructed meanings of illness include family understandings of illness, a legacy that has been shown to contribute more strongly than such factors as disease severity or socioeconomic status to the illness process (Arpin et al, 1990). Relationship patterns which appear during illness can be mirror images of patterns in previous generations of the family (Penn, 1983). And the occurrence of illness in the family during an individual's childhood or adolescence can inculcate negative meanings about illness and have a long-term injurious influence on adult functioning (Wellisch et al, 1991,1992). Over the years, the concept of personal meaning has been examined from many 25 perspectives, but in general it has come to refer to an individual's sense of purpose and identity in relation to events, relationships, and ideas that are personally significant (Cassell, 1982; Frankl, 1984; Houldin, 2000). The process of meaning construction is primarily a cognitive phenomenon, arising in response to specific events and central to the process of adjustment to everyday existence (Mead, 1934), but emotions are also tied closely to meaning, in that they can be seen as "barometers of meaning" (Carlsen, 1988). It has been said that illness cannot fully be understood without a consideration of meaning; as Toombs (1992) puts it, "the assignment of meaning and explanation is as much a part of the illness as its physical expression" (p. 104). Meaning is also a fundamental dimension of self-identity that must be understood if any understanding of the individual's concept of illness is to be gained (Cassell, 1982). The process of meaning-making is a dynamic one, adapting to changes occurring in the individual, in the course of the illness, and in the sociocultural context (Fife, 1994; Frankl, 1984; Kleinman, 1988). We have seen that the biomedical and biopsychosocial approaches to cancer, with their emphasis on pathology and distress, have contributed much to our socially constructed meanings of cancer. One only has to hear the word "cancer" to begin imagining a constellation of ideas and images. Sontag (1978) has vividly described how the fatal and mysterious image of cancer, the "demonic pregnancy", has become a widely used metaphor for evil in modern society. Advances in medical treatment have not ameliorated the public perception of cancer as a fear-provoking, death-associated disease (Levin et al, 1985; Silberfarb & Greer, 1982; Slaby & Glicksman, 1985; Pinell, 1987). As Dreifuss-Kattan (1990) has observed, "no other disease attracts to itself such a wealth of personal symbols and metaphorical equivalencies" (p. 12). It is not difficult to see why cancer has become, as Gregory & Russell (1999) observe, "etched in bodies, written into the plots of life stories, and woven into the social fabric of our times" (p. 1). The unique signature of cancer is perhaps its association with suffering, with its concomitant terrors of pain, metastasis, cachexia, and fatality, the latter always envisioned as an agonizing, 26 lingering death; as Pinell (1987) says, "cancer condenses all the characteristics of an unforgettable horrible death" (p. 27). If illness is the "perfect symbol of the complete destruction that will leave nothing intact" (Leger, 1999, p. 210), then cancer is surely the most perfect embodiment of that symbolism, from the cutting, burning, and poisoning of treatment to the promotion of the "war on cancer". Patterson (1987), in calling cancer "the dread disease", reflected an enduring schema that, like most of the literature on cancer, is saturated with images of infiltration, voracity, destruction, mutilation, catastrophe, horror, and death. Given the overwhelming influence of the above images and meanings, and given that much of the cancer experience takes place in biomedical venues such as doctor's offices, clinics, hospitals, and laboratories, it can be seen that most personal searches for meaning occur within an environment that is anything but conducive to reflection and self-discovery. As Kleinman (1988) says, the biomedical system replaces the search for meaning, a "devalued psychosocial concern", with symptom control, thereby achieving a "pernicious value transformation" (p. 9). In spite of the meaning-making power of the biomedical paradigm, increasing interest has been directed in the last three decades to the concept of personal meaning as it might relate to cancer and other life-threatening illnesses. Important theoretical work has laid the foundation for this avenue of inquiry, suggesting that the search for meaning is a significant dimension of response to life-altering events (Antonovsky, 1980; Frankl, 1984; Marris, 1974). Many qualitative studies have provided empirical evidence of the importance of meaning by describing its role in adjustment and outcome (Barkwell, 1991; Fife, 1994; Germino et al, 1995; Luker et al, 1996; McGrath, 1998; O'Connor et al, 1990; Steeves, 1992). And assessment tools such as the Constructed Meaning Scale (Fife, 1995) and the Illness Constellation Model (Morse & Johnson, 1991) have been developed to operationalize the concept of meaning as it is constructed within the context of life-threatening illness. Much of the work done in the field of cancer and meaning has relied on the significant 27 contributions of attrubution theory, based on Heider's (1958) view that individuals attribute causal connections to events in their lives in order to make sense of them. T h e process of causal thinking begins with the question " W h y did this happen to me?" , guides the individual through the course of the illness, and produces an outcome that is based on the causes, or personal explanations, generated by the attributional search (Lowery & H o u l d i n , 1996; Weiner , 1985). C u n n i n g h a m (1992) has given us a comprehensive description of the search for meaning that accompanies the cancer experience: T h e search for meaning in cancer...is the attempt to place it in its physical , psychological , social, and spiritual context; growing understanding may or may not be accompanied by physical healing, but wil l bring comfort, an awareness of our connectedness, a lessened fear of death, and a sense of authenticity and purpose in life. (p. 142) M o s t psychooncology sources do not include the subject of meaning as a topic for therapeutic inquiry. A s might be expected, those that do address the issue place it within the distress framework discussed earlier. M a g u i r e (1990), for example, includes one paragraph on meaning which begins "Here, patients feel anguished because they cannot find an acceptable explanation for their disease..." (p. 68). B o l u n d (1990) warns that the search for meaning may cause the patient to be "lost, depressed, or confused", so that "it is not uncommon that patients wil l need anti-depressant medication" (p. 20). T o p e et al (1993), in delineating the factors that promote psychological well-being and quality o f life for cancer patients, do not mention meaning at all . T h e primary impetus for the search for meaning is to create a sense o f congruence between the individual's sense of identity and the illness event (Thompson & Janigian, 1988). F o r most individuals, this involves a reconstruction o f one's personal meaning structures, on the basis of what is important and meaningful in that person's life, to accommodate the critical life event (Fife, 1994). T h u s the search for meaning can be a valuable part of the coping process (Fife, 1994; L i p o w s k i , 1970), while the "found meaning" is a positive aspect o f the coping outcome (Thompson & Janigian, 1988). What constitutes meaning w i l l , o f course, vary greatly among individuals. F o r many the 28 search wil l be rooted in religious faith, as many belief systems emphasize the importance of looking within through prayer and meditation to f ind answers. Positive meanings can be found in seeing the illness as a challenge to overcome, as an opportunity for self-growth, as a reminder of the fragility and preciousness of life, or as a catalyst for lifestyle change ( H o u l d i n , 2000; T a y l o r , 1989). Often meaning is found in an existential shift of self-identity, as the individual grieves his/her pre-cancer persona (Lewis, 1989), recreates a sense of wholeness and personal integrity (Fife, 1995), and accepts the irreversibility of the life course (Frankl, 1984). T h o s e who search and f i n d only negative meaning, such as ideas o f punishment, weakness, or malediction, may experience heightened distress and have difficulty coping (Barkwell , 1991; Wortman & Silver, 1992). A l t h o u g h there is evidence that some individuals diagnosed with a life-threatening illness do not engage in a search for meaning (Lowery et al , 1987; T a y l o r et al , 1984), and even that these individuals may be less distressed (Lowery et al , 1987), most recent research studies have established that f inding a positive sense of purpose in the cancer experience is associated with adaptive coping (Barkwell , 1991; C o w a r d , 1991; O ' C o n n o r et al , 1990). These findings confi rm Frankl's (1984) observation that i f an individual's search for meaning is successful, it gives him/her greater ability to cope with suffering. A s Fife (1994) has noted, there has been relatively little study of the impact of personal meaning on coping, behaviour, and adaptation to illness. A s might be expected, there has been even less work done on the meaning of cancer for spouses, both individually and as a marital dyad. i T a y l o r (1983), using attribution theory to study meaning as it relates to couples experiencing breast cancer, found that 95% of the women and 63% o f the men had made a concerted effort to understand why the cancer had occurred. T a k i n g her findings a step further, T a y l o r observed that the attributions made by her subjects pointed to a l ink between the meanings assigned to the experience and the struggle to develop a sense of mastery. G e r m i n o et al (1995), using a combined qualitative and quantitative approach, studied the meaning and significance of cancer for the partner relationship. Interview data indicated that both 29 partners search for meaning in an attempt to decrease the threat of cancer; the most prevalent themes identified were day-to-day adjustment and intimacy concerns. T h e researchers also noted that "the more positive the meaning constructed by the individual the more positive their general psychological adjustment, and their adjustment within the family and the d y a d " (p. 49). Narrative Perspectives There can be little doubt of the centrality o f narrative to the culture of medicine and the experience of illness. F r o m the ancient oral transmission of healing rituals to the modern sharing of case reports, narrative is fundamental to the everyday accomplishment of medical work. A t the same time, individuals often feel the need to describe and explain their suffering in the face of illness, thereby using the story as a way to order the illness experience into a coherent, meaningful form. A s B r o d y (1987) observes, there is an ongoing dynamic between medicine as storytelling and storytelling as medicine. A s postmodern, social constructivist views have taken hold across a broad spectrum of disciplines, many theorists have contributed to an expanding awareness of the subjectively l ived nature of the illness experience. T h e early theorists Berger & L u c k m a n (1966) portrayed the relationship between biological and cultural factors as a continuous dialectic between the phenomenological experience of embodied life and the detached, socialized awareness of the body as object. Foucault (1989) described how the "clinical gaze", or the impersonal, dissective attitude of Western medical clinicians, represents a disempowering discourse associated with social control. F i e l d analysts have shown how medical diagnoses can be viewed as nothing more than socially constructed narrative interpretations (Barrett, 1988; Taussig , 1980; Wai tzkin , 1991), which are then reinforced by the iterative nature of medical communication and practice (Stainton-Rogers, 1991). A n d a growing number o f theorists are now presenting material on the use of various discursive methods to understand the individual meanings o f illness found in personal experience ( A u g e & Herzl i ch , 1995; Crossley, 1999; Frank, 1998; G o o d , 1994; K a t z & Shorter, 1996; T o o m b s , 1992; 30 Yardley, 1997). Although the power of narrative has long been recognized in psychiatry, with Freud deemed a master of the narrative tradition (Spence, 1982), it is only just beginning to be recognized in other medical disciplines. Sacks (1987) has been an influential advocate of this new paradigm in medicine, which seeks to make the "suffering, afflicted, fighting human subject", rather than the disease, the central character in the clinical conversation; to achieve this, Sacks believes that clinicians must "deepen a case history to a narrative or tale" (p. viii). Hardey (1998) has noted that changes in doctor-patient discourses have led to the redefinition of patients as "experienced subjects who can contribute knowledge and take an active part in decisions" (p. 84). A growing number of practitioners has argued that doctors must realize that there is more to being a patient than is captured in clinical interpretations (Broyard, 1992; Coles, 1989; Frank, 1995; Hahn, 1995; Hunter, 1991; Kleinman, 1988). By applying narrative theory to medicine, the doctor-patient relationship, for so long characterized by "conflict and struggle between two different domains of meaning" (Mishler, 1984, p. 121), is now to be one of collaborative meaning-making; as Eisenberg (1981) sees it, "patient and doctor together reconstruct the meanings of events in a shared mythopoesis" (p. 245). Charon (1993) notes, "What, in fact, do doctors and patients do together but to create between themselves a many-staged narrative?" (p. 87). By seeking clinical advice, the patient essentially profers an invitation for interpretation; the doctor then serves as both listener and interpreter in a process of clinical hermeneutics (Daniels, 1986; Leder, 1990). It has been suggested that the compatibility between narrative and illness is grounded in the suitability of the narrative structure for incorporating adversity into the life story. Adversity, defined as "an unpleasant, unexpected event leading to a crisis of meaning" (Cohler, 1991, p. 183), seems to be a major organizing factor in all personal narratives from a very early age (Miller & Sperry, 1988; Peterson & McCabe, 1983). The way in which adversity is met in early life is a critical factor in the shaping of later outcomes (Erikson, 1963; Lorenz, 1965). And in reviewing the plenitude of 31 definitions that have been used for the term "story", Stein & Policastro (1984) found that adversity is a c o m m o n theme among both children and adults. In developing this theory, Cohler (1991) pays particular attention to how adversity in the f o r m o f "early, off-time, adverse life-changes" (p. 184) is incorporated into life stories. Identifying a "major health problem" as one of these dissonant events, he shows how narrative acts as a way to integrate the solitary adverse event into a less adverse whole, thus dismantling its power and al lowing the preservation of continuity and coherence over time. A parallel approach is taken by Becker (1997), who has shown that a major disruption in life can mobilize narrative's potent constructive capacity, al lowing a reconstruction of self and the self s place in the world. It appears to be only unanticipated adversity or disruption, such as a cancer diagnosis at an unexpected point in life, that provides the dramatic quality or tension that Bruner (1990) sees as the essential organizing principle o f narrative reorganization. Successful resolution of this tension or adverse event, by rendering the experience once again canonical, bolsters personal resilience, vitality, and mastery and creates a sense o f biographical continuity (Becker, 1997; Hunt , 2000). T h e narrativization of adverse events such as an unexpected illness, then, allows the individual to "make sense or manage meanings o f adversity" (Cohler, 1991). These meanings are often embedded in stories that draw upon historically grounded family and cultural meanings (Seaburn et al , 1992). Reactions to cancer have been shown to be powerfully affected by the meanings that families have ascribed to illness through multigenerational narratives (Sherman & Simonton, 2001; W a l s h , 1998). A n illness narrative, therefore, wi l l reflect not just an episodic recounting of symptoms and reactions but also a personal interpretation that is f i rmly embedded within sociocultural realities, all of which together constitute what M i s h l e r (1984) calls the " l i feworld" of the patient. B y enabling the individual to objectify and externalize, and hence communicate, the phenomenological realities of the experience, the illness narrative is used to "give credence to the distinctive events and long-term course of suffering" (Kle inman, 1988, p. 49). These realities often 32 remain abstruse and unformed until the narrative process releases them, at which time the story, as creative vessel, can become "the container for all the shifting emotions, especially fear and grief, that are experienced in the course of the illness and treatment" (Dreifuss-Kattan, 1990, p. 4). In the act of verbalizing the experience of cancer, the narrator is also able to intimately relive the experience and yet achieve a certain therapeutic distance from it, thus being both the main protagonist of the story and a reflexive observer (Bruner, 1986). In this way, the storyteller reevaluates the cancer and the existential trauma it provoked and is able to "battle against the feeling that the cancer is totally senseless and deprives life of meaning" (Dreifuss-Kattan, 1990, p. 5). Mathieson & Stam (1995) show how this process serves as more than just a self-affirmation: For cancer patients...stories have a special meaning. In negotiating their way through regimens of treatment, changing bodies, and disrupted lives, the telling of one's own story takes on a renewed urgency. In the end, they are more than just stories but the vehicle for making sense of, not just an illness, but a life. (p. 284) In making sense of cancer, cancer narratives transform the lived knowledge of the cancer experience from the liminal to the actual and are thus a valuable gift with great pedagogical potential (Gregory & Russell, 1999). The value of knowledge embedded in experience has long been recognized (Gadamer, 1975; Heidigger, 1962); with more and more clinicians recognizing the value of patient stories, it is anticipated that the medical clinic will turn its orientation from the "clinical gaze" towards more nuanced and compassionate listening. As Charon (1993) puts it, the hope of the narrative model of medicine is to "redefine the clinical enterprise in ways that lead to deeper understanding and more effective care" (p. 95). Psvchotherapeutical Intervention Although it has been said that "it is by no means taken for granted that oncology counseling is desirable or necessary" (Goodare, 1994, p. 4), many oncology writers and researchers have cited the benefits of intervention for cancer patients and their caregivers (Fawzy, 1994; Fellowfield, 1988; Golden et al, 1992; Goodare, 1994; Gordon et al, 1980; Henderson, 1997; Houldin, 2000; Rowland, 1994; Sherman & Simonton, 1999; Worden & Weisman, 1984). Acceptance of counselling for 33 cancer patients, however, has been hindered by the influence of the biomedical community , as is evident in O'Boyle 's (1993) comment that "the Cartesians among us f i n d it enormously difficult to accept the possibility of any psychological influences on diseases that are as obviously organic as cancer" (p. 126). Some highly visible advocate-researchers have alienated medical oncologists by l inking counselling with improved survival rates (LeShan & G as s man, 1958; L e S h a n , 1989; Spiegel, 1991), an issue that remains controversial and unsettled. B y the 1990s, psychotherapeutic counselling for cancer patients had been fairly widely accepted, with Holland's (1998) psychooncology text covering crisis counselling, psychoeducational interventions, group therapies, cognitive-behavioural interventions, art therapy, telephone counselling, meditation, spiritual approaches, bedside interventions, alternative strategies, and rehabilitation counselling. Sufficient empirical work was available to allow the publication of clinical reviews and meta-analyses (Devine & Westlake, 1995; F a w z y et al , 1995; M e y e r & M a r k , 1995). A n important direction for future counselling has been brought forward by Henderson (1997), who notes that with improved cancer survival rates, interventions w i l l need to be geared more towards survivors than towards patients. Psychosocial intervention has been defined as the "systematic efforts applied to influence coping behaviors through educational or psychotherapeutic means" (Massie et al , 1989, p. 460). T h e goal of psychosocial oncology care is "to understand the unique needs and strengths o f the patient and family to create an individualized plan of care that promotes optimal psychological adaptation" ( H o u l d i n , 2000, p. 7). G i v e n the overwhelming research evidence that both spouses experience some level of psychological distress when faced with cancer, it would seem that the development of counselling interventions for spouses, both individually and as a couple, would be an area of considerable activity. Despite early evidence that intervention is beneficial (Cohen & W e l l i s c h , 1978; Johnson & Stark, 1980), however, there has been little systematic consideration of the effectiveness of formal psychotherapeutic intervention in addressing spousal distress. A s Rol land (1994b) has said, "the 34 particular issues for couples facing illness and disability remain a surprisingly neglected topic in the couples therapy literature" (p. 327). In general, interventions have tended to involve a combination of support, information, and cognitive-behavioural coping strategies. Christensen (1983) used a structured counselling protocol for post-mastectomy couples; Goldberg & Wool (1985) tested a structured 12-session intervention to assist the spouses of lung cancer patients; Sabo et al (1986) examined the effectiveness of a support group for husbands of women with breast cancer; Carter & Carter (1994) reviewed their extensive work using traditional psychotherapy with patients and spouses dealing with breast cancer; Knakal (1994) described a therapist-moderated couples' support group that through group interaction and individual counselling sought to maintain homeostatic balance in the relationships; Peteet & Greenberg (1995) instructed clinicians on how to provide case-tailored interventions for "schizmogenic", or habitually impoverishing, marriages; Blanchard et al (1996) compared the effectiveness of the Coping With Cancer intervention program for the spouses of cancer patients to the services offered by a regional medical centre's oncology department; and Horowitz et al (1996) provided an 18-month psychoeducational group intervention for spouses of patients with brain tumors. Varying degrees of effectiveness were reported for the above interventions, indicating a need for more intervention studies, including for the unserved young adult group. Rolland (1994b), noting that cancer support groups are usually site-specific rather than age-sensitive, called for more groups "organized according to stages of the life cycle" (p. 344); Northouse et al (1998) stated simply that "clinical interventions need to be targeted toward couples" (p. 46). 35 Chapter III M E T H O D O L O G Y Existential Phenomenology T h i s study rests upon the existential-phenomenological approach to understanding human experience. T w o strands of thought come together in this approach: existentialism, which looks for understanding through the study of l ived experience, and phenomenology, which explores human awareness of experienced phenomena. T h r o u g h existential phenomenology, the researcher investigates human experience i n order to reveal meaning. W h y are meaning and experience so important and how do we go about creating them? A s a starting point, I approach this question through the classic phenomenological writings: Husserl 's (1965) groundwork in phenomenology, with its emphasis on individual consciousness and experience, Heidigger's (1962) work on the centrality o f interpretation, Kierkegaard's (1959) emphasis on the striving for individual meaning against the force of societal dogma, and Sartre's (1977) call for meaningful action in the face of meaninglessness. O n this philosophical foundation rest Mead's (1934) view of identity as a social phenomenon, Kel ly 's (1955) positing of the self as a social construct, Weber's (1958) concept of society as a network of meanings, and Berger & Luckmann's (1966) views on the social construction of reality. T h e above grounding of ideas encouraged the researcher to situate herself as a recorder and interpreter of experience and meaning within the framework o f subjective reality and social connectedness. Qualitative Inquiry Qualitative inquiry, in seeking to penetrate the research participant's subjectively l ived world, is in best alignment with the phenomenological worldview described above. Comprehensive texts on the qualitative method (Banister et al 1994; D e n z i n & L i n c o l n , 1994; K o p p a l a & S u z u k i , 1999; M o r s e et al, 2001; Silverman, 1997) trace this connection between philosophy and method in terms 36 of hermeneutics, or the interpretation of meaning in text. Indeed, qualitative research can be seen as a kind of methodical hermeneutics, an instantiation of human science that brings its own type of methodological rigor to the research environment (Rennie, 1999). Qualitative research, being inherently multimethod (Brewer & Hunter, 1989) and multiparadigmatic (Nelson et al, 1992), also supports the use of diverse research tools and interpretive paradigms. Thus the resarcher can employ many different but complementary approaches, such as the case study method, narrative analysis, hermeneutical inquiry, existentialism, social constructivism, and so on, to fulfdl the aim of obtaining a rich, in-depth understanding of the research phenomenon. This triangulation allows the researcher to gather a substantial amount of empirical material that will serve the qualitative aims of rigor, breadth, and depth (Denzin, 1989; Fielding & Fielding, 1986). Another strength of the qualitative method is its flexibility. Rather than working from a rigid, predetermined plan of inquiry, the qualitative researcher approaches the research work with a certain openness, artlessness, and pliancy, what Kvale (1996) calls "deliberate naivete". This does not imply unpreparedness or indecisiveness, but rather represents a shift of focus from discovering "facts" to describing meanings and themes as they arise in the interview context. As Merleau-Ponty (1962) established, the first goal of the investigator is to describe, not to explain. Since qualitative methodology favours data-collecting procedures that depend on intensive immersion in the social phenomenon being studied, it can best attend to the existential quest for meaning as expressed in subjective, conversational accounts of life. As Pawson (1989) puts it, qualitative researchers are "committed to understanding the respondent's 'meaning' and so regard data collection as a task for inducing everyday talk" (p. 292). It is through immersion in such "everyday talk" that the researcher can uncover meaning. As qualitative research is concerned with obtaining in-depth research data about a particular phenomenon, subject samples tend to comprise a small number of cases chosen on a theoretical basis. Sample choice is then determined by the research question, the adopted approach to the 37 research, and practical considerations such as time and financial resources (Lyons , 2000). T h e researcher's sampling procedure was checked against M i l e s & Huberman's (1994) list of sampling stategies, with the study in question fitting within two categories: intensity sampling, in which information-rich cases manifest the phenomenon intensely, but not extremely, and criterion sampling, in which all cases included meet a specified criterion. A n important consideration for any qualitative researcher is to ensure that the methodology chosen has what is k n o w n as "methodological rigor", in that it can be said to be of high quality when measured against certain standards. T h e question o f what those standards should be is still an ongoing debate in the qualitative research forum. F o r this study, four sources were chosen by the researcher to assess the quality o f the research. First, the foundational work of L i n c o l n & G u b a (1985) was considered, and the research weighed against their "parallel criteria" of credibility, transferability, dependability, and confirmability. Second, the work of Stiles (1993) was instructive in showing how qualitative validity can be approached as a "fit" or "agreement" between coherence validity, consensus validity, and testimonial validity. T h i r d , Merrick's (1999) evaluation o f quality in qualitative research was relied upon to test for trustworthiness, reflexivity, and representation. A n d f r o m within the narrative tradition, Riessman's (1993) conceptualization of validity as evidenced by persuasiveness, correspondence, coherence, and pragmatic use was utilized as a final criteria set. Qualitative Approaches to Illness It is a presumption of this study that disease is not s imply a biological entity, but is constituted through personal and sociocultural forces into meaningful narratives. If we are to discover the meaning of cancer for a particular participant or participant group, methods must be used that nurture the collection of rich, meaning-full data. Whereas quantitative research can only provide the etic viewpoint, qualitative research gives an emic, intimate, "insider" view of the illness being studied ( O l s o n , 2001). A s Gregory & Russell (1999) say, "qualitative research methods give priority to persons and their disease journeys" (p. 3). 38 It has been observed that qualitative methods have not been widely used to study cancer ( W a x i e r - M o r r i s o n et al, 1991). There are a variety of reasons for this, but the most significant is the overwhelming influence that the positivist, objectivist biomedical paradigm has enjoyed in the oncology f ield. Research budgets have been, and for the most part still are, heavily weighted in favour of clinical medicine and quantitative research. A s more individuals with cancer, their caregivers, and professionals focus attention on the psychosocial aspects of cancer, however, qualitative and interdisciplinary research have been increasingly legitimized. These slow but profound changes in the praxis of scientific inquiry have come in response to the realization that our bodies, our minds, and our lives are fundamentally and intimately inseparable. B e y o n d biology and epidemiology, the domains of personal, aesthetic, moral , and ethical knowledge are integral to a holistic understanding of disease. It is this human side of disease that qualitative research is best equipped to describe, since it "challenges researchers to understand the cancer experience, and the suffering therein, in a more holistic manner" (Gregory & Russell , 1999, p. 4). A n d the qualitative data obtained f rom such research, because it alone contains the necessary "wealth of unique insights into the personal stories and dynamic nature of cancer" ( K i n g et al, 1997, p. 37), can best capture the cancer experience. T h e Co-Reseacher A p p r o a c h W o r k i n g within the existential-phenomenological point of view, research interviews were seen as experiences or encounters in which both the researcher and subject were active participants. T h e interview became a collaboration in which the researcher was seen as a co-researcher, engaged with the participants in the construction of meaningful and accurate research data. W h e n viewed in this way, it was apparent that the choice of such an approach is more an epistemological one than a technical one; as Sciarra (1999) says, "it is more about philosophy o f knowledge and how one understands the real" (p. 37). Four tenets of orientation were seen as fundamental to the co-researcher philosophy. First, 39 the interviewer as co-researcher was part of the interview in a complete and inescapable way; at no time did the interviewer become strictly an "observer" or "onlooker". Hathaway (1994) has characterized this stance as one in which the researcher is like an actor in a scene with other actors. Second, the interviewer as co-researcher was at all times a student rather than an expert. In this way the research process became an interactive rather than a controlling one (Hamelton, 1994) and the researcher by relinquishing control was able to enter the world of the participants (Kleinman & C o p p , 1993). T h e goal at all times was to create a truly democratic environment in which the parties were equal and the only "expertise" was that of the participants about themselves. T h i r d , the interviewer as co-researcher did not attempt to remain detached or distanced f r o m the research proceedings, but rather accepted that some degree of emotional involvement w o u l d be part of the interview process. T h e co-researcher's empathy, described by Rogers (1959) as feeling "as i f one were the other person", was considered a positive, desirable, and advantageous part o f the research process. N o t only were emotions allowed, they were seen as crucial to understanding meaning, for it is considered inconceivable that the co-researcher could enter the world of the participants without some emotional involvement (Kleinman & C o p p , 1993). T h u s , the co-researcher was free to rely on both emotion and cognition to understand as ful ly as possible a world of thoughts and feelings that inevitably was different f r o m her own. Fourth, and fol lowing f rom the above, the interviewer as co-researcher stayed alert for overidentification or underidentification with the participants. A l t h o u g h the co-researcher aims to enter the world of the participants, certain types of involvement can change the co-researcher relationship into an overly symbiotic one. Sciarra's (1999) advice was fol lowed here: "The investigator ought to take a systematic step back f r o m the data (and this includes the researcher's emotions and emotional involvement) to analyze and understand what such involvement is revealing about the participants' and the investigator's worlds of meaning" (p. 45). T h i s can be accomplished if the co-researcher maintains an empathic stance in the research interaction, but then assumes a neutral stance in the analysis of the data (Patton, 1990). 4 0 Narrative Theory and Psychology Every human experience can be seen as a story, and on this simple premise rests the narrative approach to the study of human psychology. It is in the interpretation of these stories, however, with all their richness and complexity, that the narrative researcher's true challenge lies. Since the main theoretical grounding for this study is in narrative theory and psychology, I will discuss this approach in some detail. Along with discourse analysis, post-structuralism, and post-modernism, the narrative approach embraces the social constructivist paradigm of thought. Within this paradigm, human identity and experience are ineluctably dependent on the discourses we use to make sense of everyday life. The influential early theorists Potter & Wetherall (1987) decreed that the crucial question for researchers must be "How is the self talked about, how is it theorised in discourse?" (p. 102), and thus language and how it is used became central to any understanding of human experience. Narrative theory shares the social constructivist commitment to the central role of language in human self-ideation, but its most fundamental assumption is that human experience is meaningful (Crossley, 2000; Garro & Mattingly, 2000). As human beings, we are essentially interpretive creatures, engaged in a lifelong process of reflecting on what is happening to us and trying to make sense of it. Narrative psychology focuses on how humans use their sense-making capabilities to interpret their individual worlds through what Polkinghorne (1988) calls "meaning systems". It is this focus on meaning and interpretation that distinguishes narrative theory, and the psychology and methodology based on it, from other approaches. From a narrative perspective, then, "meaning" is preeminent, and can be defined as "any interpretation of experience that is related or connected in some way to something or someone else" (Crossley, 2000). Such interpretations are not produced independently, but are formulated within meaning systems such as language and cultural narrative. Thus, from a very early age, we absorb culture-specific patterns of meaning through fairy tales, myths, and historical sagas (Bettelheim, 1976; H o w a r d , 1991) and through family stories and cultural narratives (Langellier, 1989; M c A d a m s , 1993). Perhaps at this point we should take a moment to consider the term "narrative". T h e concept of narrative as an organizing principle in human thought has become popular in many diverse disciplines, with the result that there has been a proliferation of opinions as to what a narrative actually is. In the field of narrative theory, Polkinghorne (1988) has definitively established that a narrative is a "meaning structure that organizes events and human actions into a whole, thereby attributing significance to individual actions and events according to their effects on the whole" (p. 18). T h u s narrative is the overarching concept, with "story" defined as "the set o f events in their chronological order" (Bal , 1994, p. 11) and plot seen as "the intelligible whole that governs a succession of events in any story" (Ricoeur, 1980, p. 171). A narrative can contain an infinite number and variety of stories and plots, a repertoire f r o m which each person selects specific stories and plots according to the narrative that he/she desires to tell at that moment; as Smith (1980) explains, "for every given narrative there are always multiple basic stories that can be constructed in response to it" (p. 221). Narrative stories and plots can be categorized and placed within discrete groupings, and m u c h work has been done on such classification systems (Frye, 1957; Gergen & Gergen, 1986; Howarth, 1980). Whether narrative, story, plot, personal myth, autobiography, or other term is used, it is generally accepted that narration is a universal, immemorial , and irresistible creative act which speaks to the need o f people of all ages and cultures to recast the experiences of their lives in a meaningful form. A l t h o u g h cultures may vary in respect to what is considered an acceptable narrative, the organization of life into an ordered form appears to be characteristic of all cultures (Cohler, 1991; Levi-Strauss, 1962). A s Barthes (1975) observed, "Narrative starts with the very history of (hu)mankind" (p. 237). T h u s narrative is an essentially human way of being in the world and o f thinking about the world, a universal inclination to order events into temporal patterns and 42 configurations of meaning (Brooks, 1985; Carr, 1986; Danto, 1985; Freeman, 1997). Indeed, Ricoeur (1981) comments that " T h e f o r m of life to which narrative discourse belongs is our historical condition itself" (p. 288). W i t h i n this supraordination of narrative as a basic dimension of human existence, narrative has many vital purposes. T h e most basic purpose of narrative is as a descriptive and explicatory mechanism; indeed, Bruner (1986) states that "we seem to have no other way of describing 'lived time' save in the form of narrative" (p. 12), and Widdershoven (1993) maintains that "life has an implici t meaning which is made explicit in stories" (p. 27). In addition, narrative serves to help human beings make sense of and find meaning in reality, whether the factual reality of actual events or the symbolic reality o f thoughts, feelings, and dreams; as White (1980) sees it, narrative activity is a solution to "the problem of fashioning human experience into a f o r m assimilable to structures o f meaning" (p. 5). That this is a quintessential human striving is evidenced by the fact that very young children construct narratives (Fivush et al, 1987; M i l l e r & Sperry, 1988) and w i l l keep doing so until o ld age, often in the f o r m of a life story (Cohler & Galatzer-Levy, 1989; K a u f m a n , 1986). A n important function of narrative, of course, is as a communicative or dialogical medium. T h i s dialogue is both intrapersonal, as the narrator brings together l ived experience and interpretation in what Gadamer (1975) calls a "fusion of horizons", and interpersonal, as the narrator shares this construction with others. A s Freeman (1997) puts it, narrative serves as a bridge between people, a way of achieving contact and understanding even across significant gulfs of time and space. A n essential function of narrative is to bring a sense of temporal ordering, continuity, and coherence to life ; as L i n d e (1993) has said, narrative provides "not only temporal sequence and temporal continuity, but also causality" (p. 111). E v e n the simplest account of events, or a story w h i c h ends in a state of indeterminacy, w i l l exhibit an attempt to put a "stamp of order upon the chaos of existence" (Ricoeur, 1980), in what K e r m o d e (1967) has called "obligate successiveness". Narrative also allows the narrator to construct self-identity by "storying" the self into a 43 certain unique configuration ( M c A d a m s , 1993); thus our very identities, predicated as they are upon the process of historical understanding, are tied to narrative (Freeman, 1993; Gergen & Gergen, 1997; K e r b y , 1991; Maclntyre , 1981; Polkinghorne, 1991). Narratives provide us with personalized moral "scripts" ( A r n o l d , 1962) that inform our moral consciousness and guide our actions in an ongoing process of dialogical moral development (Day & Tappan, 1996). Narrative provides the f o r m for our "culture tales" (Howard, 1991) or "master narratives" (Linde, 1993), whether told in grand myths or simple proverbs. Narrative serves as a pedagogical tool, as all narratives have the capacity to explain and educate (Coles, 1989). Lastly, human emotions can be understood as "narrative enactments", in that they reveal "intense organismic involvement in the plot" (Sarbin, 1995, p. 219); as Singer (1995) explains i t , "specific emotional responses in interpersonal interactions belong to the context of a wider narrative" (p. 260). If we accept that narrative and meaning-making are central to the human experience and serve many important purposes, we must then ask: how is meaning actually constructed f r o m narrative? Bruner (1986), expanding o n the groundbreaking work of Barthes (1970), divided the meaning-making process into two modes: the paradigmatic mode, which organizes experience hierarchically into categories and concepts, and the narrative mode, which "deals in human intention and action and the vicissitudes and consequences that mark their course" (p. 13). In this narrative mode, through what Bakhtin (1981) characterizes as a continuous interplay between internal and external dialogues, meaning is organized in the f o r m of narratives, stories, and plots. Events by themselves are o f nominal interest, providing only the "episodic dimension" of the narrative (Ricoeur, 1981); it is the way in which the narrator forms the events into a complex of personalized meanings within the "configurational dimension" (Ricoeur, 1981) or "pattern of transformation" (Ochberg, 1994) that matters. A l t h o u g h the process of narrative construction in the human m i n d is not pertinent to this study, one point is worth mentioning. It is assumed that Mandler 's (1980) famous dictum "the meaning is in the text" has been superseded by the position that meaning is constructed through social interaction and that therefore, as initially proposed by Bartlett (1932), story schemas are culture-specific and "one story map may not fit a l l " (Invernizzi & A b o u z e i d , 1995). T h u s a narrative is viewed as a cultural artifact, and the researcher proceeds at all times with an underlying awareness of the social context. Narrative Methodology T h e growth and popularity of narrative inquiry has resulted in a proliferation of models and approaches. A commonsense approach to achieving some coherence out of this profusion of materials was found in M i s h l e r (1995), who proposes a simple typology of analytical methods. Narrative approaches are grouped into three categories: referential, which focuses on the temporal sequence of events and their order of presentation in the story; textual, which studies the strategies by which types and genres of stories are organized; and narrative, which concerns itself with the contexts and consequences of storytelling. T h i s study is grounded in the third typological grouping, in that it aims to produce what M i s h l e r calls the "narrativization of experience". A n impressive body o f narrative research studies has provided insight into the continuing process o f the illness trajectory and established narrative as a leading methodology in qualitative medical research (Estroff, 1995; Frankenburg, 1986; Garro , 1994; H y d e n , 1997; Mattingly, 1994; Riessman, 1990; Robinson, 1990; Steffen, 1997; W i l l i a m s , 1994). Researchers have also focused specifically on cancer f rom within the narrative methodological framework (Bell , 1999; G o o d et al, 1994; Gregory & Russel l , 1999; Hunt , 1994; Little et al, 1998; Saillant, 1990). A n d narrative methodology has been used extensively to explore the meanings of marriage (Baker & Johnson, 2000; Johnson, 1999; O h r b u c h et al, 1993; Oppenheim et al, 1996; Riessman, 1989,1991; V e r o f f et al, 1993a, 1993b, 1993c; Weingarten, 1991). H a v i n g established the suitability o f the narrative method to the research topic, the next step was to select a model of narrative analysis. T o that end, the researcher conducted a survey o f analytical approaches which w o u l d serve the research purpose, namely to narrativize experiential 45 accounts of the cancer experience as obtained in semi-structured interviews. O n c e a comprehensive review of potential models was completed, the researcher selected those that were a good fit with the subject environment. In this instance, sources that employed narrative analysis in an illness or trauma environment were given special consideration. F r o m the above two paths of inquiry, a working set of materials was chosen. F o r analyzing the narratives prepared f r o m the interviews, three main sources were used. Crossley's (2000) work on applying narrative methods was the major source, both because it represents a contemporary outlook and because the author has written extensively o n narrative psychology and illness (Crossley, 1997,1998,1999). Riessman's (1993) practical, succinct work on narrative analysis was also invaluable; as with Crossley, Riessman's work with relationships and illness provided an added sensibility to the endeavour (Riessman, 1990,1991,1992). A n d Smith (1995) was consulted for his guidance on how to transform the raw data obtained in semi-structured interviews into a quality representation ofthematic material. It is also important to note that Crossley's approach to narrative methodology relies extensively on M c A d a m s (1993), whose work the researcher has used in previous narrative projects; indeed, M c A d a m s was often consulted to supplement Crossley's guidelines. Other sources consulted as background support wereColaizzi (1978), Cortazzi (1993), Lieblich et al (1998), and M i s h l e r (1986). A s we have seen, narrative methodology is inherently flexible, and this was borne out by how well these materials supported and complemented each other. Narrative researchers frequently apply multiple perspectives to narrative analysis in order to enrich their understanding of the data; Johnson (1999), for example, in studying courtship and marriage narratives, used analytical frames derived f r o m different combinations of narrative analysis, conversation analysis, and discourse analysis. A s M i l l e r (1997) states, dialoguing between different interpretive frameworks allows the researcher to gain "interpretive insights, particularly into the ways in which meaning is implicated i n our everyday lives and activities" (p. 25). Narrative research engaged the researcher in two activities: "developing a well-founded story 46 that is faithful to l i fe" and "drawing out the meaning, plot, or explanation embedded within [the] story" (Cochran, 1990, p. 78). T h e narrative analysis proper began with a close reading of the narratives. Initial thematic impressions were noted and significant events identified, with a descriptive term assigned to each. A n example f r o m the narrative accounts studied here w o u l d be the classification of one type of event as "gaining maturity". E v e n on the first reading of the narratives, this theme emerged clearly in all of the narratives and was universally described as meaningful to the experience studied; it thus became identified as a possible narrative theme. R a w narrative data, of course, must be reduced to a f o r m in which it can be analyzed. T h i s study utilized the ethological approach, in which a selection is made f r o m written narrative accounts, rather than the behavioural approach, in which the data is recorded at the time of observation, or the ecological or ethnographic approach, in which the classification of data starts in the f ield and is refined at a later time (Wilkinson, 2000). It also displays a content-focused orientation to the data, in which the researcher focuses on the referential and evaluative elements of the narrative rather than the structural or functional elements (Berman, 1995; L a b o v & Waletsky, 1967). T h e narratives prepared for this study reflect as accurately as possible the stories shared by the participants. T h e researcher was not bound by any prescribed procedure in meeting this goal , but rather tried to ensure that the words on the page were capable of being confirmed as accurate and complete by the participants. T h e most reliable way of insuring accuracy is to strive for completeness; as W i l k i n s o n (2000) says, "there is no 'correct' way or set pattern to writing up anecdotal reports, but they should always be as complete as possible" (p. 233). Narrative themes emerged f rom listening, reading, and writing. T h e process of identifying themes was a long, slow, careful process, in order to ensure that the highest level o f validity was obtained (Riessman, 1993). T h e process embraced both a systematic rereading of the transcripts and narratives, in which the researcher was immersed in the text, and a stepping-back period, in order to achieve some distance f r o m the text. A s M i s h l e r (1991) has pointed out, analysis cannot really be distinguished f r o m transcription; both are achieved simultaneously in a continuous 47 process of "testing, clarifying, and deepening" (p. 277). As the narratives must be validated by the participants, the researcher tried to remain faithful to what actually happened in the interviews and to make the narratives as accessible as possible. Thus a concerted attempt was made to follow the tapes and transcribed interviews as closely as possible, editing only as it was necessary to preserve meaning and continuity, and to use plain, understandable language. Without devaluing in any way the need to establish qualitative validity, it is important to state that historical truth is not the aim of narrative inquiry. Some might even say that narrative is essentially a dramaturgical or declamatory process, more suitable to the application of Burke's (1945) grammar of dramatism or Gee's (1991) linguistic analysis; perhaps narrative, after all, is too essentially one of Geertz's (1983) "blurred genres" to give itself up completely to the measured scutiny of analysis. In the end, the narrative researcher must not be "enchanted by the myth that assiduous application of rigorous method will yield sound fact" (Gergen, 1985), and remember that trustworthiness and not truth is the ultimate goal. The Narrative Case Study Working within the qualitative and narrative domains as described above, the data sets for this study were gathered in the form of four narrative case studies. The case study approach is well-established as one of the preeminent research tools in human science; for this study the seminal works of Yin (1994) and Stake (1994) were used to guide the researcher. The case study method is ideal for studying interpersonal relationships such as those in this study; as Stake (1994) says, it seeks out emic meanings and lets each unique case "tell its own story" (p. 239). Indeed, Cochran (1990) has noted that "case study is probably the preferred approach to narrative construction" (p. 79). 48 Recruitment Participants for this study were recruited using recruitment notices (Appendix A ) placed with cancer facilities and organizations. Participants were screened over the telephone to establish suitability. A brief summary of the research goal, interview protocol, and informed consent procedure (Appendix B ) was provided. E a c h potential participant was cautioned that reliving a traumatic experience can be upsetting. Questions were invited, a date set for the first interview, and assurance of confidentiality given. T h e Interview Protocol In arranging the interviews for this study, the researcher asked the participants to choose an interview environment in which they w o u l d be relaxed and comfortable. T w o couples were interviewed in their homes, one couple in the husband's private office at work, and one couple in a private room at a restaurant. E a c h couple was interviewed as a dyad, since the focus of the research was on shared meaning. A l t h o u g h the participants were given a 1.5 to 3 hour range for the duration o f the initial interview, the researcher allowed the participants to set the pace and determine the interview course. T h e four initial interviews lasted 2 hours and 40 minutes, 2 hours and 25 minutes, 3 hours and 20 minutes, and 2 hours and 5 minutes. T h e interview protocol for the study was based on the semi-structured model of interviewing as developed by Smith (1995). A n c h o r e d in the phenomenological approach to psychology, it is predicated on the assumption that what a participant says in the interview has some ongoing significance and that there is a relationship between the content of the discourse and the person's psychological constructs. In other words, the researcher assumes a connection between content and meaning. In determining the researcher's orientation during the interviews, the work o f K v a l e (1996) was used. In particular, the researcher strove to meet Kvale 's ten quality criteria for the interviewer: knowledgeability, structuring, clarity, gentleness, sensitivity, openness, steering only to remain 49 focused, critical checking, remembering, and interpreting through extension of meaning. U s i n g the semi-structured interview framework, the researcher entered the interviews with a set of open-ended questions (Appendix C ) ; these questions, however, were only representations of those areas o f interest that the researcher wished to investigate. Questions were seen as invitations or prompts, designed to encourage storytelling and meaning-making. T h e interviewer was free to fol low the participants as they explored their feeling and thoughts, and to respond naturally to those feelings and thoughts. Researcher involvement, however, was tempered by the realization that "the richness of the data is determined by the appreciation that the researcher has for the data" (Breakwell, 2000, p. 240). E a c h interview was audiotaped and transcribed. Narratives were then prepared f r o m the transcriptions. In a short second interview, each participant couple validated the accuracy and completeness of the narrative prepared f r o m the first interview. Both the first and second interviews concluded with a short debriefing. A l t h o u g h the goal in each research interview was to obtain meaningful data, the researcher felt it necessary to balance this effort with a consideration o f the particular situation of the participants and the potential therein for emotional vulnerability and relived trauma. K e e p i n g this ethical imperative in m i n d , the researcher took extra care to build rapport, protect f rom harm, and create an empathic environment. T o that end, the researcher reviewed several sources on communicating with cancer-affected people (Barraclough, 1999; Blitzer et al, 1990; H o u l d i n , 2000; Kle inman, 1988; W e i s m a n , 1981) and drew upon an extensive amount of counselling and volunteer experience with cancer-affected individuals and their families. 50 C H A P T E R IV N A R R A T I V E O N E : B R A D A N D E L L E N B r a d and E l l e n had been married two years and four months when E l l e n was diagnosed with breast cancer. B r a d was 35 years o l d at the time and E l l e n had just turned 36. B r a d works as a mechanic and E l l e n is a sales representative for an office supplies company. E l l e n told B r a d about the diagnosis right after she got home f r o m her appointment with the doctor. A l t h o u g h she blurted the news out to B r a d as soon as he came home f r o m work, she found it "very hard" to tell h i m . She couldn't bring herself to say the word "mastectomy", it sounded too final. F o r E l l e n the diagnosis itself was not as big a shock as the moment she had found the l u m p in her breast. She describes this moment as feeling "ice c o l d " and "frozen". In fact, when she first found the l u m p she was convinced it was cancer. She spent an agonizing week, not sleeping and not eating, mostly drinking a lot, telling B r a d she was worried about work. W h e n she received the diagnosis, she felt " l u c k y " that it was not an aggressive cancer and had not spread. In fact, she even celebrated this with her sister. B u t in spite o f feeling fortunate in some ways, E l l e n felt that "it's true, your whole world changes, turns upside d o w n " . B r a d was "bowled over" when he heard the diagnosis, as E l l e n had told h i m nothing about the lump or the test. B r a d also felt angry, although he wasn't sure at what. H e was upset that E l l e n had been keeping things f r o m h i m until that moment. H e couldn't really grasp it because it was "such a shock" and because he "had no idea what to expect". F o r E l l e n the question of how this was going to affect her work and her marriage was very important. Brad was also thinking about the effect on the marriage, but he thought the work issue wasn't important, that they had to focus on what needed to be done. E l l e n thought that B r a d was s implifying the issue, that he d id not realize how important her j o b was to her. B r a d experienced a feeling of confusion about the cancer, feeling it was all a "big mystery". 51 H e was very confused about what the diagnosis might mean in terms of physical changes to E l l e n . It was overwhelming and momentarily he "felt like running away". B o t h B r a d and E l l e n were shocked by the diagnosis because they felt they were leading healthy, active lifestyles. E l l e n also found it hard to understand because her family is f r o m "tough, hardy stock, hardly ever sick". B r a d and E l l e n "drank a lot of wine" to help them cope with the diagnosis, but they also spent time talking about practical matters such as how to tell Ellen's family . That night as she lay in bed, E l l e n started worrying about what the diagnosis might mean for the future o f her marriage. She remembers that she longed for something f r o m Brad , wasn't sure exactly what, but that he went to sleep. She lay there, " i m m o b i l i z e d by fear" about what w o u l d happen to her and to her marriage. F o r E l l e n the entire treatment period was "very difficult" . She had a lot of support f r o m her two sisters, both in a practical sense and in keeping the atmosphere positive. H e r father was quietly supportive as well . In addition, she met some other women with breast cancer and found it helpful to talk with them. Both B r a d and E l l e n found it difficult to deal with the way that Ellen's mother was handling the diagnosis. E l l e n describes her mother as "a bit hysterical...I wished she'd just go home" . B r a d says she was "a pain in the ass", that she approached it as a "death watch". Sometimes it was so bad B r a d had to ask her to leave. F o r Brad , the treatment period was a time of many challenges. H e felt that things were out of his control, and this made h i m frustrated and angry. H e got mad at people he had no reason to be mad at. H e was extremely busy with his j o b and looking after household matters, including the care of many animals. H e thought about how many people and animals depended on h i m . D u r i n g the treatment period B r a d and E l l e n felt a sense of separation f r o m each other. T h e y didn't talk much . E l l e n perceived that B r a d was "trying to be supportive", but felt isolated f r o m h i m , felt that as a man he couldn't understand what she was going through. She often felt irritable at little things that B r a d did . But even though she was feeling removed f r o m B r a d and was focused on 52 taking care of herself, she realized that B r a d was "having a hard time dealing with everything". B r a d and E l l e n both found that the effect of Ellen's surgery affected them deeply. E l l e n became quite emotional when talking about it. B r a d found the physical after-effect "shocking" , and didn't know what he should say. H e tried to put himself in Ellen's shoes to try to understand what she was going through. H e tried to imagine what it w o u l d be like to have a body part cut off. In the end, however, he was certain that he "couldn't possibly understand". A l t h o u g h it was extremely hard for both of them, both B r a d and E l l e n felt that it was something that had to be faced, and that it was better to be honest about it. B r a d told E l l e n how horrible he thought the after-effect o f the surgery was. T h i s type of honesty had always been a part o f their relationship. E l l e n found this a bit hard to deal with, but was grateful that B r a d was dealing with it with the honesty that she had come to expect f r o m h i m . In fact in some ways B r a d just said out loud what E l l e n was thinking. E l l e n found that Brad's honest reaction to things provided a balance to her sisters' constantly positive attitude. U n l i k e her sisters, B r a d did not say "everything w i l l go on just like before and it's not the end of the w o r l d " . She was grateful that B r a d "let it all hang out", because she needed both of these types of support. E l l e n felt a reasonable amount o f confidence in her doctors, but she was "not impressed" with the way she was told about the diagnosis. She felt that she should have been told that she had cancer more honestly and directly, and that she should have received more opportunity to ask questions and more information. F o r Brad , the cancer itself represented a loss of power and control. A t first, it seemed to B r a d that the cancer "had all the power", but then he and E l l e n regained a sense of power when they refused to give in to fear. E l l e n saw it a bit differently. She says that she never felt any loss of control, that their experience with facing the cancer was "a separate thing". F o r her cancer was something that happened to somebody else. It seemed to her that everywhere around her people were talking about 53 cancer. M o s t of all , for E l l e n cancer meant "the end of 'my former life '" . B o t h B r a d and E l l e n , however, felt that the word or idea of cancer had a lot of power in itself. T h e y both described the cancer as if it was some type of menacing creature. B r a d said it had them both "by the throat", that they had to "wrestle it to the ground". E l l e n had to get over thinking it was a "scary monster". Brad spoke fondly about the helpfulness of humour in getting through the difficult times. E l l e n agreed, saying that B r a d could always make her laugh. E l l e n also spoke about the empathy o f pets, how they can know when y o u are hurting and w i l l offer whatever comfort they can provide. Both B r a d and E l l e n emphasized that the support they got f rom Ellen's family was very important to them in getting through the treatment phase. B r a d did not get along all that well at times with his in-laws, but he gives them a lot o f credit for the support they provided. B r a d and E l l e n both felt considerable anxiety about how the surgery w o u l d affect their sexual relationship. T h e y had a mutually strong attraction to each other that included sexual chemistry but also was expressed in the fiery way that they often communicated. A l t h o u g h B r a d thought the physical effects of Ellen's surgery were "horrible", he assured E l l e n , and himself, that it w o u l d heal. H e felt that it was important to be honest about how he felt, but he was confused at the status of their sexual relationship and didn't really know how he should act. H e believed that their attraction for each other could not be affected by the cancer, that it was still there. But even though he felt that way, he didn't know if, how, or when he should approach E l l e n sexually. E l l e n was also worried about their sexual relationship. She had always been an equal sexual partner, with a strong and muscular body, but now she felt like an "alien" in her o w n body, tired, weak, and overly sensitive. She didn't want to be touched too much , but on the other hand she remembered how it used to be, and therefore felt "so mi x e d up" . She felt that their sexual activity since the surgery "wasn't any good" , "wasn't like before", was just a "pathetic exercise". It seemed like they were trying to be "like the ourselves f r o m before", but it wasn't possible. She started 54 thinking that maybe Brad should find some other sexual partner. B r a d was unaware that E l l e n felt these things. H e was not expecting that their sexual relationship w o u l d be the same as before, but he thought things w o u l d get better. B r a d and E l l e n say that there were two events w h i c h made a big difference in restoring their relationship to the way it had been before the cancer treatment. T h e first was Ellen's return to her job, which made her feel that maybe she had recovered f r o m the cancer and the "nightmare" of it. B r a d felt relieved that E l l e n seemed to have regained her strength, not just physically but emotionally as wel l . She no longer appeared weak, and because of that he was able to stop being the " R o c k of Gibraltar" all the time. A l t h o u g h going back to work did help in Ellen's recovery, she was actually going through a period of great emotional turmoil . In fact, she thinks that "it was actually hitting me for the first t ime". She felt that everyone had been putting themselves out for so long to look after her, that she had better "show a good face to the outside w o r l d " . T o everyone else she presented herself as a "cancer survivor", but inside she was "spaced out. . .numb, depressed". She felt that she couldn't share her feelings with anyone, and took to drinking to help her cope. B r a d was unaware of Ellen's inner turmoil , and was just relieved that everything seemed back to normal. H e thought that he had the " o l d E l l e n " back. H e thought that things were "getting back to normal" . T h e second event that was important in further restoring B r a d and Ellen's relationship was a retreat that E l l e n went on for people in recovery. W h e n E l l e n met people who were in worse straits than she was, she realized that she was "a very lucky w o m a n " and was able to see things " i n perspective". A t the retreat she also kept a gratitude journal, which she found very helpful. W h e n she came back f r o m the retreat E l l e n embraced Brad . In that moment, standing with her arms around her husband, E l l e n felt for the first time that she really was going to be O K , that her life could be O K even i f it was not the same as before, and that her marriage could survive the cancer experience. It was an overwhelming feeling, a feeling of permission to feel hopeful again. 55 B r a d and E l l e n were both shocked that cancer had entered their lives at the point in time that it d id . F o r both of them this shock was closely connected to their perception o f themselves as young, health-conscious, active people. E l l e n also thought of her and Brad's parents and how they were still relatively healthy, so it didn't seem right that someone in Ellen's generation should be the one with the life-threatening disease. She felt that it was also not right that now she w o u l d be the sick one, the one that her parents w o u l d have to look after and worry about. B r a d had another perception of how the cancer d id not "fit i n " with his life. H e had anticipated that his marriage would have challenges; in fact, he had spoken earlier of some they had already faced. But he thought those challenges w o u l d be "the usual stuff", the normal growing pains any marriage experiences. Clearly cancer was not in this category, leaving B r a d feeling "weird" about its appearance in his life at this time. A n d he felt angry that their healthy lifestyle had not protected them f r o m disease. B r a d and E l l e n describe many changes in their marriage that were brought about by, or related to, the cancer experience. O n e of those changes was a newfound sense of maturity, of being more grown-up than people of the same age. B r a d says he feels "older" now, even though on the surface not m u c h has changed. E l l e n feels B r a d has always been more mature than his friends, but that he has become even more mature. E l l e n also spoke about how her girlfriends seemed to change in their attitude towards her for a time, treating her as "the leader" when they were together, a change that made her uncomfortable and which she believes in connected to her status as a cancer survivor. B r a d and E l l e n felt that their cancer experience set them apart f r o m their circle of friends. B r a d was astounded at the lack of tactfulness and sensitivity displayed by a friend who told a "boob j o k e " in a bar during Ellen's period of treatment. B r a d and E l l e n realize, however, that their friends had no way of understanding what they were going through. B r a d and E l l e n find that they relate differently to each other now because of the changes in their perception about "strength" and "weakness". B o t h B r a d and E l l e n had always thought o f 56 E l l e n as a strong, independent person, but the cancer experience has both confirmed this and changed it in important ways. E l l e n now feels that Brad's protectiveness of her contains an appreciation of her strength and is not motivated by some "macho guy" impulse. B r a d is clearly admiring of how E l l e n passed the "test" she was given, and was made aware of how m u c h confidence he has in her strength. F o r both there seems to be a realization that a person is strong when that person can accept a certain challenge that may weaken them, even make them helpless, and yet retain faith in their o w n strength through it all . B r a d and E l l e n report that there have been changes in their lifestyle that they attribute directly to their cancer experience. T h e i r life now is "s lowed-down" , "streamlined", "not so complicated". T h e y have learned to appreciate quiet times together. T h e y look back on their former life with affection, but view it as just that: a completely separate time in their lives, when they were completely different people. W h e n E l l e n was able to accept that her life was going to go on , she felt all her sexual confusion and tension drop off, like a "shadow" lifting. H e r thankfulness at being alive and being with B r a d allowed for the true restoration o f their relationship. A s E l l e n says, this was by no means a foregone conclusion; in fact, she says "it could have gone either way" . B o t h B r a d and E l l e n felt that they had no experience in dealing with something like cancer, that at times it appeared stronger than their marriage bond and capable of destroying it. B u t in the end, when the shadow was lifted f rom E l l e n , the bond, that mutual "chemistry", was as strong as ever, and, as E l l e n says, "we found our way back". B r a d and E l l e n agree that, after the cancer experience, their marriage is "definitely stronger". E v e n though they felt alone at the time with their individual experiences of the cancer, they chose to remain connected at a crucial moment. T h e y cannot ful ly describe the threat that cancer presents to a marriage, and say that only other couples who went through it w o u l d understand. B u t they can describe why the marriage is stronger now: they have learned how to remain strong and independent individuals and at the same time look out for themselves more as a couple than as 57 individuals. B r a d proudly characterizes their marriage after the cancer as "Super C o u p l e " , that they are really a unique couple because of the individual and combined strength that they can count on to be there when they need it. E l l e n adds that this sets them apart f r o m their friends because it gives them a "a stronger base" to their marriage that others don't have. E l l e n also feels that their cancer experience is unique because it occurred when they were both so young. B r a d and E l l e n envision their future as both more secure and less secure. A s individuals and as a couple, they both feel more secure, more ready to meet any challenge that may come their way. But now they also appreciate that plans are capable of being waylayed at any moment by an intrusion like cancer. W h e n they plan for their future, therefore, there is a sense that the plans have a heightened importance than they didn't have before. E l l e n puts it this way: "It's more meaningful when we plan now, because we know how easily it all could change". T h i s awareness o f the fragility of expectations has also affected B r a d and Ellen's communication about financial matters. Before the cancer experience, this had been an area of completely different attitudes for them, with B r a d wanting more disclosure and discussion and E l l e n being uncomfortable with such openness. E l l e n is no longer so threatened by openness in this area, as she has been able to disconnect it f r o m her fear o f being controlled by Brad . T h i s has meant a shared commitment not just in terms of money but also to the marriage itself, and has cemented a sense of trust. B r a d and E l l e n have many things to say about cancer as a learning experience. E l l e n feels that she has a new perspective on how things like physical appearance, sexual attraction, and communicative "fireworks" are not "the biggest deal" . She had previously felt that because these forces of attraction in her relationship with B r a d were so strong, they must constitute most i f not all o f the marital bond. T h e cancer represented a threat to all those forces, and hence to the marriage itself. W h e n B r a d and Ellen's marriage became focused o n the cancer treatment, it was like all of 58 the attractive forces were altered or stilled by the experience. E l l e n felt that she was " i n the middle of this quiet". W h e n she realized and accepted that the marriage had inevitably changed, E l l e n "took that quiet thing and brought it along with me.. .into the next phase". Entering this new phrase was a gradual thing for B r a d and E l l e n . T h e y were not conscious at the time that such a big change was taking place. W h e n they begin to describe the new phase, Brad and E l l e n f i n d themselves looking back on two former phases in their life, their marriage before the cancer and during the cancer period. E l l e n uses terms like "energy", "conflict" , "push-pul l " , "fight like cats and dogs", " f u n " , "passion", "excitement", "up and d o w n " , "arguing", " turmoil" , and "stress" to describe what their marriage before the cancer was like. E l l e n says she " l iked our marriage before, it was great", but she often wondered i f it was going to last. She also recognizes now, in a wistful but accepting kind of way, that "I guess it couldn't stay the same even i f we'd wanted it to". B r a d was always very aware that things w o u l d change, and he was ready to accept whatever that might mean. T h e hard thing for h i m was that he didn't know what to expect, was " i n the dark" a lot, couldn't understand what his wife was going through. B u t he saw the upcoming change as a kind of do-or-die challenge, a "sink or s w i m kind of thing" , a personal test to see whether he could "be strong when I was up against something I couldn't do anything about". In looking at the new phase of their life, B r a d and E l l e n once again relive their cancer experience. Perhaps because they now have a new togetherness, they describe the cancer experiece mostly in terms o f separation and isolation. Brad says that a person can have lots of support, but " i n the end you're alone with it". E l l e n remembers that she felt "very, very alone, very isolated". T h e y didn't communicate much , and they didn't know what was happening with the other partner. B u t in Brad's trying so hard to maintain their normal pre-cancer routine, they both took comfort. E l l e n remembers a moment that for her symbolized their entering into the new phase. It was a simple, ca lm moment, just B r a d c o m i n g in and asking i f she wanted to go out for dinner to their favourite restaurant. F o r a moment E l l e n didn't think about the cancer like she always had before, 59 and it was a wonderful , liberating feeling. Somehow in that moment her thoughts went instead to Brad, and her heart went out to h i m , recognizing how hard it must have been for h i m . A s E l l e n says, "for the first time I didn't feel like I was apart f r o m h i m " . E l l e n feels that this was the real start o f her recovery, w h i c h she feels is "still in the works" . A l t h o u g h Ellen's healing process started when she went back to work and went on the retreat, the quiet, ordinary experience described above was very important because it allowed B r a d and E l l e n to finally put the isolated part of the cancer experience behind them. A l t h o u g h E l l e n had been aware of B r a d throughout the cancer period, and was sometimes irritated or angry at h i m , she was not ready to appreciate his struggles, his loyalty, his sincerity, his day-to-day presence. It was like a window of gratitude opened for E l l e n that day, through which she could see her husband with new eyes. B r a d remembers the evening too. H e talks about how he always thought of E l l e n as his wife, through it a l l , how he never wavered in this feeling, how confusing it was when she couldn't accept that, how he was so tired of being "the v i l l a i n " . H e sums up his feelings this way: "she was m y wife, in all that means". B r a d and E l l e n look upon their marriage now as " c a l m " and "relaxed". T h e y realize that they "could have lost everything". T h e y remember the issues that almost tore them apart, like their disagreement about having children, as "so pointless now". T h e y have a much greater understanding about the futility of trying to change each other. T h e y have been through their o w n individual hells, and a shared hell , and survived. T h e y are proud that they " d i d O K with it, learned f r o m it", and came out of it stronger and with a new level of respect for each other. W h e n considering why the cancer experience happened to them, B r a d and E l l e n see the experience as a "test", that most people are tested by something and the cancer was their test. T h e y don't feel that such a question can really be answered, that the important thing is that they "passed the test". 60 C H A P T E R V N A R R A T I V E T W O : G E R R Y A N D L I N D A Gerry and L i n d a had been married five months at the time of Gerry's diagnosis with skin cancer. Gerry was 28 years o ld at the time and L i n d a was 30. G e r r y was working as a truck driver and furniture mover and L i n d a as an office manager at a uniform manufacturing company. Gerry had noticed before the wedding that a wart on his neck had grown in size, but had put off going to the doctor until after the wedding. A biopsy showed that the tissue was malignant. G e r r y had surgery shortly afterwards. W h e n Gerry heard the word "cancer", it "freaked me out". Gerry's dad had had a malignant wart removed many years previously, but G e r r y didn't think he was in any danger at such a young age. G e r r y tried to put the diagnosis out of his m i n d so he wouldn't be "eaten up b y " anxiety. H e says now that it probably w o u l d have been easier to just worry. Between the diagnosis and the surgery, Gerry worked some extra hours so he could build up a bit of money in the bank. H e also saw the physical work as a good way to work off his frustrations. H e says that he wasn't frustrated at anything in particular, just at the "annoyance" of needing surgery. L i n d a wasn't too surprised at the cancer diagnosis. She says Gerry has a lot of warts and she's heard that people with a lot of warts often have skin cancer. She saw it as a "bit of a downer" because they had just been married and were looking forward to a camping and skiing honeymoon in a few months. Gerry's surgery went w e l l ; in fact, Gerry was surprised at how quickly it went. However , his neck was very sore afterwards and he had to wear a bandage for quite a long time, and then a special cream. H e says that the worst part of it was that he "missed wearing a tie so much , ha ha" . Gerry's parents were very supportive, "very sweet". L i n d a says the surgery was "no problem". She remembers that the only real effect o f the 61 surgery was that Gerry had trouble m o v i n g his head. She missed putting her arm around his neck, as she often did when he was in his computer chair. D u r i n g the weeks after the surgery, L i n d a continued working and was gone during the day. Gerry "fooled around" on the computer a lot. L i n d a felt that Gerry should have some time to recover, so she "didn't bother h i m m u c h " . Gerry was "pretty tired" in the week after the surgery. D u r i n g the day he w o u l d play a lot o f computer games or just watch T V . H e had arranged to take a month off, partly so his neck could heal and also to get their camper ready for the honeymoon. In the second week after the surgery, one or more of his high school buddies w o u l d usually come over and they would "smoke dope and drink beer". F o r Gerry it was "like being in high school again", and he was enjoying it. M o r e and more, L i n d a w o u l d come home f r o m work and f ind Gerry "out o f it". Sometimes his buddies w o u l d still be there. She didn't know these friends very wel l , and wondered w h y Gerry wasn't hanging out with his regular friends f r o m work or softball. She would sometimes get angry at Gerry but felt bad about it because "after al l , he'd just had cancer". She says Gerry and his buddies w o u l d turn the house into a " p i g sty". She'd clean up the mess and try to remember that Gerry was going back to work soon. She fried to get Gerry to work on the camper but "he'd say he would and never do it". Gerry isn't sure how it happened, but soon after the surgery he started smoking marijuana every day around lunch time. H e was no longer in any physical pain, and he knew that he had promised L i n d a he w o u l d work on the camper, but he just couldn't get interested in anything. A l l he seemed to be interested in was "pot and beer". H e amends that to add "oh, and f o o d " . In the weeks after his surgery, Gerry became virtually inactive. F r o m being a very active person, m o v i n g furniture around every day and working around the yard, he went to being a "total sloth". Often he'd order pizza or Italian food . H e started getting a belly, and sometimes he didn't shower for days. L i n d a didn't know what to do. She thought to herself " T h i s isn't G e r r y " , but that maybe this was the after-effect of having cancer, maybe it was normal for people to go into a "bit of a 62 s lump" . She thought, " o h wel l , he'll be back at work soon and everything w i l l go back to normal" . A n d she thought, "we're still going on our honeymoon, so he'll have to get himself together for that". A s the time for going back to work got closer, Gerry got less and less interested in doing so. It wasn't that he didn't enjoy his job , because he d i d , very much. H e really l iked and respected his boss, thought he was "a really cool guy" and paid very wel l . But he just didn't want to go back to work. H e thought to himself, "what should I do?, m y boss is counting on me to come back, L i n d a is counting on me to go back, I have to go back" . H e just didn't understand why the thought f i l led h i m with dread. L i n d a had no idea this was going on in Gerry's m i n d . She thought he was just going through a phase. She thought his high school buddies were a "bad influence" on Gerry , because most of them "weren't exactly go-getters". She says that Gerry was " k i n d o f chubby" when she met h i m , so she knew he could get out of shape, but she thought he just needed to get back to work. Gerry and L i n d a were "avoiding each other" during this time, even though they were physically together most mornings and evenings. B o t h of them felt that something was "off" but that it w o u l d right itself when Gerry went back to work. L i n d a didn't want to "push" Gerry too m u c h because he had just been through a difficult experience. Besides, most o f the time he was too "out of it" to talk to. , Gerry and L i n d a weren't really talking m u c h during this time. T h e y w o u l d normally have dinner together every night and talk, but that wasn't happening. T h e y were also not having sex during this time. L i n d a says Gerry w o u l d often "pass out" on the couch early in the evening. Three days before he was supposed to be back at work, Gerry called his boss and said he wasn't c o m i n g back. H e didn't tell L i n d a . H e had to get "really drunk" to tell his boss. H e felt very bad about doing this to his boss, w h o was counting on his c o m i n g back. H e was afraid if he didn't tell L i n d a , she'd find out secondhand. So , the next day, he got very drunk again and told her when she came home f r o m work. Gerry remembers that L i n d a had brought home a bolt of discarded 63 uniform cloth that they could use for the camper cushions. L i n d a was "shocked". She asked Gerry w h y he had made this decision. L i n d a says Gerry said " F u c k that stupid j o b , I can get another one". Gerry doesn't remember the conversation, but he remembers that L i n d a was "as m a d as I'd ever seen her". She threw the bolt of cloth against the wall . T h e y had a fight that lasted all evening. Gerry and L i n d a say this was not their first disagreement, but it W A S their first big fight. L i n d a was shocked not just at Gerry's decision but also at how "nasty" he was. She says that he called her names, including "pushy bitch" and "money grubber". She couldn't believe it was actually Gerry, he was so angry and foul-mouthed. She realized he was stoned and drunk, but at the same time she thought there must be some "reality" about the way Gerry was acting. She questioned the reality of her marriage, wondering i f it was all "a sham". Gerry and L i n d a remember that the fight went on past midnight. F o r the first while it was mostly about Gerry's announcement that he wasn't going back to his job , but later it also involved all kinds of other things. L i n d a just "let f l y " with all kinds of things that had been bothering her for years (Gerry and L i n d a had l ived together for two years before being married). Gerry doesn't remember anything about the fight. H e wishes he could, because he says now it's only Linda's version of what happened that he has to go on. H e doubts that her version is completely accurate, because she was so m a d at h i m . H e doesn't deny that he was angry, because he knows that he has a temper. L i n d a says she "remembers what she remembers". She says maybe she doesn't remember it word for word, but that she remembers "for sure" how angry they both were. She was very surprised at the intensity and amount of their anger. She thought it was so "weird" that they had just been married and now they were "at each other's throats". She remembers thinking "Is this the real Gerry? I've never seen h i m like this". Gerry and L i n d a describe the period after this fight as "a stalemate". T h e y d id not speak to each other m u c h and Gerry slept on the couch or in the spare room. Gerry continued to stay at 64 home, smoke marijuana, drink beer, and eat. L i n d a went to work, came home, and cleaned up. T h i s went on for about two or three months. Gerry says that, looking back, he didn't deal well with the cancer diagnosis. In fact, he says, he didn't deal with it at all . H e didn't want to face the fact that he had cancer, and f r o m the moment of the diagnosis, he went into "denial mode" . H e hates the word "cancer", and he's always been afraid of getting it. H e didn't want to think about it, "before, during, and after", and he d id everything he could to avoid thinking about it. Gerry feels that maybe his cancer was just a minor cancer, but it wasn't minor for h i m . H e felt "stupid" because other people were having to cope with m u c h more serious types of cancer and dealing with it m u c h better. H e felt like a "weenie" because it caused so m u c h anxiety for h i m . H e felt angry at L i n d a because she seemed to think it was no big deal, and even though he K N E W it was no big deal, he resented her attitude. H e also resented her expectation that he w o u l d just "heal up and then start right in o n " the camper. Gerry feels that the whole process of denial put a huge burden on h i m . H e is not sure whether the "sloth" phase was part of the denial, or whether it was an attempt to lessen the burden of the denial, or both. H e realizes now that surrounding himself with his o ld high school buddies was a way of pushing L i n d a away and also protecting himself, because "we just talked about stupid stuff like sports and cars". H e didn't want to see his regular friends. L i n d a maintained her normal round of social activities at first, explaining that Gerry was "having a bad reaction to the cream". She felt very uncomfortable around her friends, not because o f the ly ing but because "they treated me differently". She says her friends didn't want to hear anything about cancer, that "they acted like the word could give them cancer". She thought that they were "a bunch o f idiots". Eventually she stopped going to social gatherings. Gerry says that although he didn't realize it, f r o m the moment he heard the word "cancer" he started doubting everything about his life. A s the weeks went on he not only felt disinclined to go back to work, he also started looking at his marriage with different eyes. H e wondered why he'd 65 gotten married, and why to L i n d a . H e started thinking about his old girlfriend and wondered what she was doing. H e thought about call ing her up. L i n d a was totally unaware of Gerry's feelings about cancer. She says he treated it like a "simple matter" o f getting the surgery and letting it heal. She says Gerry tends to avoid "getting into the nitty gritty" about most things so she thought it was his normal way of coping. She tried to talk with h i m about how he felt about the diagnosis and whether he should avoid working outside so m u c h but he was "not too terribly concerned". She thought he was doing O K until he started drinking and smoking marijuana every day. Af ter the big fight, Gerry and L i n d a remained in their "stalemate" phase for about two or three months. Gerry continued to stay at home, drinking and smoking pot; L i n d a continued to go to work. T h e n , they say, "it happened". A n old friend of Gerry's f r o m out of town, M a r k , came to visit. M a r k is described by Gerry as "a bud f r o m school, about m y age, no I guess a year younger, k i n d of a live wire, gift of gab, girls always went ape for h i m , a good guy, we used to hang out quite a bit". M a r k stayed with Gerry and L i n d a , but was usually gone during the day. L i n d a wasn't sure about M a r k and what his influence on Gerry might be, but she was glad that he seemed "really ambitious about his future". O n e night, M a r k asked Gerry why he and L i n d a seemed to be so "hostile" towards each other. Gerry said "I don't know, why don't y o u ask her?" L i n d a was in the kitchen at the time. M a r k asked L i n d a to come into the l iv ing room. Eventually she did , remaining standing. Gerri says he asked, without looking at L i n d a , " M a r k wants to know why we're so hostile". L i n d a just stood there, not knowing what to do or say. Something inside of her wanted to reach out to Gerry , because she heard something in his voice that "broke m y heart". But she remembered all the things he'd said in the big fight and this kept her f r o m doing so. Eventually she said something, but neither Gerry nor L i n d a remembers exactly what. What they do remember is that M a r k invited L i n d a to sit d o w n and she d i d , in a separate chair. T h e y remember that M a r k said "What 's up with y o u guys?" and they both laughed. 66 After some hesitation, a conversation ensued. A t first, Gerry and L i n d a felt "awkward" with just being in the same room together. Gerry had had one or two beers but had not smoked marijuana because M a r k "wasn't into it, some sort of allergy to smoke" . Gerry and L i n d a both remember that they felt awkward looking at each other, but at the same time it was a relief. Gerry also remembers thinking how "pretty" L i n d a looked. L i n d a remembers thinking how fat Gerry's face had gotten. Gerry and L i n d a talked that evening about a lot of things. T h e y realize now that having a third party there was somehow conducive to openness and honesty and at the same time helped them maintain a certain level of civility towards each other. M a r k occasionally made a comment but mostly listened; eventually he left to go out with friends. Gerry and L i n d a were surprised that he "stuck around" as long as he did , listening to "all our dirty laundry". Gerry and L i n d a talked a lot about Gerry's decision not to go back to work. Gerry realized as he talked about it that it was "very complicated". H e had a hard time expressing his thoughts and emotions. F o r the first time he had had to explain everything that had happened, everything that he had experienced, because M a r k didn't know anything about it. H e thinks that that was useful because it "made me have to put it all out there". H e also thinks it was useful that M a r k wasn't a close, regular friend, because, being a bit removed, he was fairly neutral. Gerry and L i n d a talked all about Gerry's feelings about his cancer. Gerry was surprised, and a little embarrassed, at how open he was about everything, especially in front of M a r k . A t times he had tears in his eyes. H e says he went into a "meltdown" . T h r o u g h talking, Gerry and L i n d a realized that they had had completely different and separate experiences of the cancer. L i n d a was hurt that Gerry had kept everything inside, kept everything f r o m her, but she understood that Gerry didn't know what else to do. She says she went f r o m at first taking it personally to seeing that it had nothing to do with her. In talking about the cancer, Gerry acknowledged that he has always had a "phobia" about cancer. H e has always l ived in fear of getting cancer, f r o m as young as he can remember. H e had 67 never told anyone about it. A l l his life he thought every small ailment was the onset of cancer. H e has had a recurring dream that he is wearing a red jacket or coat and walking into a barn, and he thinks it might be connected to his phobia. Gerry talked about how he believes his not going back to work was a way of asserting some control at a time when he felt out of control. H e also said that L i n d a always seemed so m u c h in control, and part o f that was wanting to control h i m . T h e cancer was very m u c h connected to the control issue, in that it was something that he felt no control over and destroyed his o w n sense of control. Gerry and L i n d a discussed the control issue and found that they had very different perspectives on the issue. Gerry had an ongoing sense of just barely managing to hold onto his own share of the control in the marriage, feeling that L i n d a exerted most o f the control. L i n d a felt that Gerry had the most control because he had a j o b , savings, and a car when they met, and she did not, because they l ived in the house that Gerry was renting when they met, and because they had close ties to Gerry's family and friends and not to Linda's , as L i n d a was f r o m out of town. Another issue that surfaced for Gerry was how the cancer made h i m feel about himself as a person. Gerry started feeling "weak" when he received the diagnosis, a constant fatigue that seemed both mental and physical . H e didn't talk to his doctor or anyone else about it because he recognized the feeling as something he had often experienced in the past. Whenever he feels " l o w " about himself he gets very lethargic and has trouble accomplishing anything. In this instance, the cancer represented a blow to his ego because he felt so "stupid" about the way he couldn't control his fear. Af ter their long conversation, Gerry and L i n d a decided to go to counselling, with the idea that they wanted to "sort things out". T h e y went for two sessions but d id not find it useful. T h e y feel that maybe it was too soon for any in-depth counselling because "we didn't even know what the problems might be". T h e y continued to have regular talks, however, and say it was like "getting to know each other all over again". Gerry and L i n d a are glad that the cancer occurred when it d id , so soon after they'd been 68 married. T h e y say it "liberated" their real feelings because it forced Gerry to confront some things and in turn that made them both look at issues they'd never even mentioned. There is a freedom in their communication now. T h e y look back at "the big fight" and say it was the "dam bursting", the pivotal event that put so many raw feelings out there that they couldn't be ignored any longer. Gerry and L i n d a feel that improved communication is the biggest change in their lives since the cancer experience. T h e y worked through what they now call Gerry's "sloth period" by agreeing to give Gerry a few weeks to decide what he wanted to do and by Gerry going to a career counsellor. Gerry wrote a letter to his former boss explaining his actions and apologizing for quitting at such short notice. In the end Gerry went back to his o ld job . Gerry says that talking about his phobia has also been a liberating act. H e feels very relieved and now he and L i n d a laugh about it, cal l ing h i m " M r . H y p o c h o n d r i a " . Gerry says he still feels foolish about it, but "so what". L i n d a says she thinks it's " k i n d o f cute". Gerry and L i n d a feel "more secure" about their marriage than before the cancer experience. T h e y realize that they never really communicated before, in a truly adult way. Gerry says he still doesn't feel completely like an adult, but he supposes that he's "getting it together more now" . L i n d a says that "yeah, he's still a b ig k i d " , but she says she "knew that going i n " . She keeps a close watch on Gerry's warts because she says he's not diligent enough about it. Gerry and L i n d a say their level of trust has always been high, but it has increased because they went through a hard time and survived. L i n d a is proud of Gerry's honesty and says it has made her realize just how hight their level of trust is. Gerry knows that L i n d a doesn't understand his fear, but it is enough that she tries. H e says he can always count on L i n d a , in every way. Gerry and L i n d a think their experience with cancer has had a "focusing" effect on them with regards to their plans for the future. T h e y talk more seriously about it now, although they feel that they are still young enough that they can "just enjoy l i fe" for awhile. Gerry is very happy back at his o l d j o b , and L i n d a continues to enjoy her job . Gerry had a lot of fun with his high school buddies, and he has kept in touch, but he laughs 69 about how "interesting" the " o l d high school thing" seemed to h i m . H e realizes it was just a way to "avoid things". Gerry and L i n d a say they feel a bit "awkward" around their regular friends, and think it may be because they "don't know how to deal with" someone so young having cancer. Gerry says he wishes M a r k l ived closer, because he "really seemed to have his shit together". Gerry and L i n d a think they are "a pretty good match", but they say that the cancer experience showed them how their differences can be "a big obstacle" to staying connected with each other. O n e example o f this is their completely different feelings about illness. Gerry , because of his fear of cancer, is prone to let illness "paralyze" h i m and bring his everyday routine to a standstill. L i n d a tends to "work through" any ailment, taking a " m i n d over matter" attitude. Gerry and L i n d a say they never had to confront these things before, in fact were unaware of most of them. Gerry talks about how funny it is that o f all the people he knows, he's the only "cancer hypochondriac" and yet he's the one that got cancer. H e says it shows " G o d has a sense of humour" . H e recognizes that he has to "live w i t h " the possibility of recurrence and being "the cancerphobia poster c h i l d " , but now he can talk about it. H e feels "almost like there's a big hand pointed at me like in M o n t y Python" . Gerry and L i n d a are still working through issues of power and control. L i n d a acknowledges that she tends to be "bossy" and "opinionated", and says she finds it hard to take off her "manager's hat" the minute she walks in the door. L i n d a also acknowledges that she is m u c h more ambitious than Gerry . Gerry and L i n d a are trying to incorporate this difference into their marriage as an asset. Gerry tries to appreciate Linda's ambition as "the kick in the ass I probably need", and L i n d a tries to see Gerry's laid-back attitude as a way of keeping things in perspective. Gerry and L i n d a feel more like equal partners now. T h e y attribute this to seeing things " i n a more mature way" . T h e y feel that the cancer experience showed how two people working at cross purposes can make the experience a negative one, that it can affect a couple on many levels. T h e y never actually saw the cancer experience as a shared experience in the first place, so couldn't be real partners during that experience. A g a i n , Gerry and L i n d a feel that working with the control issue helped them feel more equal. Gerry and L i n d a say that they haven't got the perfect marriage, but they're "getting there!" T h e y think that in their 30s they wil l build on what they have learned in the last while . T h e y look back on the cancer experience and the "sloth period" and smile, because, they say, it was the "real beginning" of their marriage. Gerry and L i n d a don't know why the cancer experience happened to them, other than that Gerry may be prone to it because of heredity. T h e y feel that bad things happen "because things happen, who knows w h y " . T h e y don't really think about it much, and they feel the reasons aren't important; what's important is "the stuff that comes out of it". 71 C H A P T E R V I N A R R A T I V E T H R E E : N E D A N D T E R R I N e d and Terri had been married just over two years at the time of Tern's diagnosis with metastatic breast cancer. A t that time both N e d and Terri were 32 years o ld . N e d works as a private investigator and Terri is a teacher. Terri says that her cancer diagnosis was an "enormous shock". She saw herself as y o u n g and healthy, and had always enjoyed excellent health throughout her life. A t the time her life was "very hectic": she had started work at a different school, her mother had recently remarried, she was redecorating the upstairs bedrooms of her condo, and she had just started investigating fertility treatments. She remembers thinking that she didn't have time for this, that now she'd have to rearrange her whole life. N e d remembers the cancer diagnosis as a "shock" also. H e felt an enormous rush of feeling, like a blow to the chest, a combination of love, protectiveness, shock, and fear. N e d also felt like he had to protect Terry f rom the "bad atmosphere" in the doctor's office, w h i c h seemed very " c o l d " to both o f them. Terri still remembers the look on Ned's face as one of "fierceness, l ike an animal about to charge". N e d says, " Y o u mean a chicken about to shit". B o t h N e d and Terr i immediately thought o f how the news of the cancer w o u l d have to put their fertility treatments on hold. T h e y both remember a feeling of sadness about this, as they had been very excited about planning to have a family . T h e y had even been planning the baby's r o o m and picking out names, all before any pregnancy had happened. Terr i remembers that the whole world immediately looked different. D r i v i n g home in the car, she was thinking that the colours seemed so unusually bright, almost painfully so. A s the initial shock wore off, she thought about what a " d y n a m o " of energy and activity she had always been and how the cancer might change that. She already felt like a burden, long before she was incapacitated in any way. She remembers that she couldn't remember anything that the doctor had said. 72 N e d remembers that he thought " O K , this is it. Here's the big test". H e ' d always felt that something w o u l d come along to test his strength, and here it was. H e had the fleeting thought that "I could just run away". H e j o k e d with Terr i that " H e y , y o u know I'm a boob man, why are y o u doing this to m e ? " Terri's m o m was at their condo when they got home, helping with the decorating chores. Terr i thought " S h o u l d I tell her? W h e n should I tell her?" She says that she felt guilty because her m o m was so happy about her new marriage. She remembers that her m o m was wearing a cute red-and-white striped pantsuit. T h e colours still seemed very bright everywhere. W h e n he got home N e d didn't know what to do with himself. H e went outside and thought of working on the car, but he couldn't concentrate. H e went back inside and went upstairs. Terri 's m o m hugged h i m and was crying so he knew Terr i had broken the news. Terri says that telling her mother was the hardest part o f the day. She says she just blurted it out: "I have cancer!", like it was some exciting news. It sounded so strange and inappropriate in the half-decorated room. Terr i and her m o m hugged and cried. Terri's m o m offered to move in but Terr i said it was O K . That evening, N e d and Terr i went out to dinner. T h e y were both "teary" and couldn't eat much . N e d remembers that he tried to make jokes ; Terr i remembers that she was so happy that N e d was trying to crack her up like he always did. Later, N e d and Terri made love and Terri remembers how different it felt, not knowing how exactly but feeling that her body was somehow different. N e d felt relieved that he could perform; he had thought that maybe his body w o u l d react differently in some way. N e d and Terri v iv idly remember waking up the morning after the diagnosis. N e d says that he felt another rush of emotion, but this time it was mostly fear. H e says it was like "I was facing it for the first time". H e thought about Terri having to go through treatment for the cancer, and tears came to his eyes. H e thought about how he'd dated so many girls that "couldn't hold a candle" to Terr i . H e thought about their crazy wedding in Vegas . H e thought about the sex they'd had last 73 night, and felt weird because he was aroused. H e lay there, hoping it wasn't really true about the cancer. Terri remembers looking d o w n at her breast, wondering how it could look so normal. She thought about how her decorating seemed so pointless now. She had a fleeting thought about running away, just taking their V a n a g o n and disappearing. She wondered how long it would take her to die i f she didn't do anything about the cancer. N e d and Terr i made love again that morning. T h e y both felt unusually passionate and connected, but they didn't speak. Terri remembers that N e d didn't touch her breasts, and she was hurt by this. N e d doesn't remember that he avoided Terri 's breasts, but he says he remembers how beautiful they looked to h i m . Terri went through the treatment quite easily compared to some of the other w o m e n she talked to. She says that she has always been a "bundle of energy", so she just looked at it as a " b i g project" that she had to f inish. She kept a journal and encouraged others to write in it. She remembers the physical pain, and says that she often cried by herself in the bathroom, "but only a little". She says that she's the one others always look to as a source o f f u n and leadership, and she felt that she wanted to keep as m u c h of that going as possible. N e d found that Terri 's treatment period was "not as hard as I expected", but he says that going to the hospital with Terr i was hard because of the depressing atmosphere. H e was amazed at how well Terri handled the whole thing, and he developed a new appreciation of her courage and strength. H e realizes now that she made it look "a lot easier than it really was". H e wishes she hadn't tried to be so strong, but he knows he w o u l d have done the same thing. N e d and Terr i believe they could not have gotten through the treatment period without three things: a lot of support f r o m family and friends, a sense of humour, and "a lot of playing hide the salami" (Ned's words). T h e y also tried to stick to their regular routine as m u c h as possible. N e d was able to take advantage o f some accumulated time off, and found that he enjoyed cooking, "but not housework!" T h e y both made an effort to remain upbeat and cheerful, and brought home their 74 first pet, a schnauzer they named " B o o b y " . B o t h N e d and Terr i saw the cancer as an enemy invading their territory. N e d felt like a warrior at times ("a dishpan warrior"), but he knew in his heart that it was Terr i who was the real warrior. Terr i often felt weak and helpless against the enemy, but w o u l d put on a brave face. Both N e d and Terri were aware of how the other was trying so hard to be brave and optimistic and felt this was like a "secret code" between them. T h i s also made each o f them appreciate and love the other more than ever, although they did not talk about it at the time. B e i n g great fans of Seinfeld. N e d and Terr i hosted a "Seinfeld party" to celebrate the end of Terri's treatment. N e d dressed as K r a m e r and Terr i as Elaine. Everyone there had paricipated in making a tape that celebrated Terri's life. F o r N e d and Terr i , though, the best part o f the evening was when they went upstairs at the end o f the party and had champagne together in bed. N e d and Terr i felt that after the treatment ended, it was like an anticlimax. T h e y both went back to work, but they felt "out of sorts, disconnected". N e d started to resent and dislike his boss, and thought of quitting. Terr i turned into a "bit o f a tyrant" in the classroom, and was a m u c h harder marker than before. T h e i r basic routine continued as before, however, and they even took several short vacations. A t times they had arguments about trivial things, usually about how much time to spend with the in-laws or who was responsible for some household task. N e d says that this period was short-lived; Terr i says that it went on for a long time. N e d felt that it was "just us, adjusting to normal l i fe" . Terr i felt that it showed the "classic post-traumatic stuff' , that they were experiencing a normal let-down phase after the emotional intensity of the treatment period. F o r both N e d and Terr i , the above period was a learning experience that was actually more challenging than the cancer experience. T h e y thought it would be such a relief to return to normal, but it just didn't happen that way. T h e y w o u l d often "thank their lucky stars" that they were together and everything was all right, but they just didn't feel particularly happy or contented. N e d remembers that on one of their vacations, Terr i went off by herself for hours without telling h i m , 75 which greatly upset N e d . Throughout the cancer treatment period and the period described above, N e d and Terr i maintained a very active sex life. T h e y both attribute this to their strong "chemistry" and to their openness and sense of humour about the changes arising f r o m the treatment. N e d says that after the surgery, he was amazed and relieved that he felt the same about Terr i . H e adds that there was even an added attraction, in that she exhibited a new shyness and reticence that N e d found immensely appealing. H e says that although he was afraid that the sight of Terri's body after her surgery w o u l d repulse h i m , he was actually more curious than anything, and it did not affect his attraction to her. In fact, N e d and Terr i describe their lovemaking during and after the treatment period as "on a different plane". N e d and Terr i found that in spite of their marital success with the cancer experience, others were not so successful in dealing with it. Terri's mother remained steadfastly supportive, and Ned's family gave emotional support whenever they could, but Terri's new stepfather was, in Terri's words, "a jackass about it". H e seemed to have trouble dealing with Terri's illness and in fact has not visited N e d and Terr i since the diagnosis. Terr i feels angry about this and it has caused some friction in the family . N e d says that it makes h i m think less o f Terri 's stepfather, but that some people don't deal with illness very well . N e d and Terr i have a large circle of friends, and they found the different reactions to Terri's cancer interesting to observe. M o s t of Terri's female friends were extremely supportive, but a few "stayed away". Terr i has no i l l feeling towards those friends, because she knows that people are different and can only give what they are able to give. She also says that just knowing that she had a large group of friends who w o u l d still be there when she recovered, "ready to party", gave her a lift during her treatment. Terri commented about the importance o f pets in people's lives. She says that she wishes she had gotten B o o b y (their schnauzer) as soon as she was diagnosed, because having h i m around would have been a real comfort. She observes that pets seem to be able to "draw off your pain, or 76 whatever bad thing you're feeling" . N e d says that B o o b y is such a comical - looking dog, it was great to have h i m around just to look at his " B o z o face". F o r N e d and Terr i , experiencing cancer so early in their marriage was "a shock". T h e y say that they were really not prepared for such a "stumbling block" , that although the cancer treatment period was not that long, it seemed to really have a braking effect on their forward momentum. N e d and Terri felt that, before the cancer, things were really proceeding well for them, that they were full of energy and optimism, that they were always making plans for their future. T h e n , when the cancer happened, it felt l ike all that went away, and they were surprised by this. It seemed like the effect of the cancer was greater than it should have been. T h e treatment period had gone very well , their marriage was stronger than ever, and their life was pretty much back to normal, but somehow their former energy and opt imism was not the same. In spite of their best efforts, they could not regain their former happy and positive outlook. N e d and Terr i feel that of all the effects o f the cancer, this shift in m o o d has been the most difficult to deal with. T h e y realize that they're not the same people, that things inevitably change after having cancer. T h e y both feel that of all the people they know, they were probably the best equipped to handle what happened. B u t still, after all that is said, they miss the way they used to be, and feel a lingering sadness because they know they can never recapture that time in their lives. In spite of all of the above, N e d and Terri are glad that the cancer happened before they had a family . T h e y feel that it w o u l d have been a lot more difficult i f they had had children, not just emotionally but in a practical sense. T h e y also feel that they were better able to concentrate on Terri and her recovery without the responsibility of children. A n d they say that i f it was difficult to tell family and friends, how difficult would it have been to explain it to children? F o r both N e d and Terry , the cancer experience changed the way they view their jobs. E v e n after the post-cancer period of unsettledness, they found themselves feeling differently about both their jobs and work itself. N e d found that his unhappiness and dissatisfaction with his work centred on the way his boss treated h i m . In the past he had been able to "grin and bear it", but now 77 he was able to really face the situation and consider his options. N e d has decided that in two years he wil l either quit his j o b and start his o w n business, or go back to school. H e realizes that the cancer experience was a catalyst for getting h i m to think seriously about j o b issues. Terr i has experienced a turnaround in the way she feels about teaching, and she attributes this to her experience with cancer. Af ter the brief period in which she found herself acting like a "tyrant" in the classroom, she found herself enjoying her j o b more than she ever had before. She adds, however, that she is now able to put her j o b into a better perspective, in that she does not let herself get overloaded with work or miss breaks or take the office politics too seriously. She also says that she has more understanding and tolerance, both of her students and her co-workers. F o r N e d and Terr i , work has assumed a role of lesser importance in their lives. T h e y feel that before the cancer, they were quite ambitious and job-oriented. N o w , they go to work and put their time in , but it's not as m u c h of a focus for them as it was before. T h e y feel that this is a normal phase, and that they w i l l gradually return to their former, more job-oriented, state, especially when they get back to their family plans. N e d and Terr i feel that they have changed a great deal f r o m the experience they have been through, and yet remain basically the same people they always were. N e d explains that they think differently about life, but are the same people; he then amends this to say that he supposes they aren't the same people, really, if they think differently! H e says "it's difficult to explain". H e wonders i f other people who have been through the cancer experience w o u l d know what he means. Terri comments that she and N e d "have the same personality, y o u know, the same character", but that inside they have "more toughness". She says there are times, especially at work, when she feels that everyone around her is "so w i m p y " , so unable to deal with even the smallest obstacles, so concerned with petty details. She feels "so above it", that she can just "sail through" staff meetings, that she is m u c h stronger than anyone else. Sometimes she worries that her ego is getting too b i g ; sometimes she gets impatient with people because they "just don't get it". She feels like she knows the "secret of l i fe" and nobody else does. 78 N e d and Terr i appreciate everything about their lives more now. E v e n the littlest things are more meaningful. N e d takes long walks with B o o b y the dog and just enjoys the outdoors, whereas before he was always "doing something", working on the car, gardening, building, playing sports, jogging , and so on. H e has learned to appreciate "just doing nothing" . H e says that there is a part of h i m that feels he's not doing enough as a breadwinner, that he should probably pay more attention to getting ahead, but he feels confident that his ambition wil l return. Terr i talks about how conscious she has become o f her health. She says that she and N e d were always active, but that they took their health for granted and didn't pay too m u c h attention to their diet. She feels more connected to her body and is m u c h more aware of what she puts in it. She thinks that this is a very positive change in her life. She has also gotten interested in tai chi and yoga. Terr i does not think m u c h about how her body has changed. She is grateful to N e d for the way he dealt with her physical changes. She has gotten used to wearing a prosthesis and has even given it a name. She says she never had large breasts anyway so she hasn't got m u c h to miss. She notes that many people lose a body part such as an arm or leg, so it could be so m u c h worse. N e d and Terri 's relationship has "changed for the better". T h e most important changes have been an increase in communication and a decrease in what they call "sniping and bickering" . T h e y remember that they used to constantly take "little jabs" at each other. T h e y feel that this was all about "control" , that they both wanted the upper hand. T h e y also say that they were having "in-law problems" all the time, and that that caused a lot of their arguing. N e d and Terr i both feel that they paid too m u c h attention in the past to their in-laws and not enough to themselves. T h e y both felt a lot of pressure f r o m their in-laws and they took their frustrations out on each other. T h e y felt that they were expected to help out a lot with Terri's mother's wedding and honeymoon, even when they were very busy themselves, but they felt they just couldn't say no. T h e y were also helping out financially, and this was another source of tension. Since the cancer experience, N e d and Terr i are spending m u c h more time alone together, 79 rediscovering their identity as a couple. T h e y have not seen nearly as much of either their in-laws or their friends. T h e y say that this felt odd at first, because usually they "had plans" and now they often didn't. T h e y sometimes felt guilty because they knew that their family or friends had asked them to help out with something or go out somewhere, and they were "just sitting at home eating and watching T V " . Terr i says N e d was better at refusing invitations than she was; she says she has a "big-time helper, go-along thing" going. N e d says he was doing it to protect Terr i at first, but now he sees that it was good for both of them. N e d and Terr i sometimes miss all the good times they had with their friends, but at the same time they feel they "aren't missing anything". T h e y don't feel the same around their friends now. They're able to have good times still, but not in the same way. T h e y feel a sense of distance, even though they have remained close to all of their friends. T h e y feel as if their friends treat them differently, that they are "bending over backwards" to be caring and nice, but it feels overly nice. N e d says this is especially true about his guy friends, who don't "razz" or "insult" h i m like they used to. N e d also feel uncomfortable about the way his friends talk about w o m e n and enjoy pornography. Terr i doens't feel like a sick person, but she says her girlfriends never fail to inquire about her health " i n a hushed tone of voice" . Both N e d and Terr i feel that, even more than before, they are looked to as leaders o f their social crowd, but now they don't enjoy it l ike they used to. N e d and Terri joke that they have always felt that their relationship is unique, so nothing has really changed! N e d says " C a n we be M O R E unique? C a n we be E X T R E M E unique?" T h e y say that they're not different because they've gone through cancer, that many couples go through cancer, even at their young age. N o , they say, they're different and unique because of the way they accepted the cancer as part o f their life. T h e y never let themselves live in denial, give themselves up to depression, or take their worries out on each other. F r o m right after the diagnosis, they "just automatically" went into "deal-with-it mode" . T h e y credit their family backgrounds and their jobs for this. T h e y realize f r o m meeting other cancer patients that other people do not handle things as well. 80 N e d and Terr i think more about the present now than the future. T h e y think they need a period of time where they don't have to be completely serious and focused about the future. T h e y try not to feel guilty about this. T h e y feel that they are still doing better financially than a lot of their friends. T h e y are still thinking about having a family , but this is not as m u c h of a priority right now. N e d and Terri have a sense of relief that they got through the cancer experience so wel l , and this makes them confident that in the future they wil l be able to meet any crisis that life may present to them. T h e y look forward, in fact, to more challenges. T h e y feel that they know they can handle "pretty m u c h anything". Terri says it is sometimes hard to maintain her sense of having recovered in the face of her mother's and other family members' " g l o o m and d o o m " . She says that they think a cancer diagnosis means y o u are never really cured, that there's always a chance the cancer wil l return. Terr i says she has learned to "turn a deaf ear" to these sentiments. She says it's "either one or the other": people either put so m u c h pressure on y o u to "be recovered, be all glad you're not dead", or "treat y o u like it's only a matter of time before it comes back". She says her definition of recovery is "keeping yourself centred", and thinks she is in an ongoing process o f "letting m y inner c h i l d " be "scared but still O K " . Terri doesn't take the future for granted anymore. She wants to get as m u c h out of life as possible. She thinks it was somehow "fate" that she got cancer. A b o u t a month before the diagnosis she had a strange dream in w h i c h she was on a beach, playing in the sand. T h e sand had pieces o f broken glass in it and she cut her hands. She believes that this was an omen about her breast cancer. She feels "strange" abour saying it, but she feels like the cancer experience was somehow "sent" to her. She says she has no feeling of anger or unfairness, and sometimes she thinks this is " k i n d o f weird" . M a n y people, hearing of her diagnosis, suggested that she pray or go to church. Terr i feels that she has her o w n sense of spirituality. N e d and Terri feel that their marriage is the most secure one that they know of. T h e y are 81 "turned off" by the arguing and bad feeling that they see in many o f their friends' marriages. T h e y have trouble listening to their friends' " tr ivial" disagreements. T h e y feel that most couples don't realize how lucky they are to have each other. T h e y feel that most people expect too m u c h , and are unwil l ing to compromise. T h e y oberve that a lot of their friends continually find blame with their partners, not wanting to take any responsibility themselves. N e d and Terr i feel so m u c h more "grown u p " than a lot of other people their o w n age. N e d say that sometimes, in the middle of a party or night out with their friends, he feels like "a m u c h older guy" than the other men there. In fact, he feels that they are still enjoying being B O Y S , even though they are in their 30s and married. F o r Terr i , it is not a new experience to feel more grown up than those around her, because she has always felt that way. She says she is what people mean when they call someone an " o l d soul" . F o r N e d and T e r r i , cancer has been many things in their life. A t first, cancer appeared to them to be an "invader", a threat, something to be fought. Terr i says that one part o f this attitude had to be maintained throughout the treatment, to keep up their resolve and courage. N e d often wished he could have physically attacked the cancer. T h e cancer was also like an "unwelcome visitor", in that N e d and Terri knew that they "had to live with it" but wished it w o u l d just go away. T h e cancer experience has been very meaningful to N e d and Terr i as a couple. T h e y do not wish cancer on anyone, but they feel it can bring out the best in a marriage if the marriage is a good one to begin with. N e d feels that cancer is "a pretty damn good litmus test" of a marriage. A s a couple they felt like they had been on a " long trek" or "miss ion" to see whether they had what it takes to survive. N e d jokes that he could have done without this challenge, because "I like puzzles, but I've always done badly o n tests". Terri feels that the test metaphor is quite relevant to her because she is a teacher. She is usually in the position of g iving tests, rather than taking them. She says that if cancer is a test, it is a test o f "an awful lot of things". She feels that cancer tests y o u physically, mentally, and emotionally. She wonders who decides "who has to write the test". She describes the test of cancer 82 as not about " y o u versus the disease", but rather " y o u versus y o u " . She explains this by saying that the cancer and all the "bad forces" are working to defeat y o u : fear, confusion, fatigue, pain, depression, pessimism. A l l y o u have against this is what y o u can "bring to it y o u r s e l f : family , friends, love, support, a positive attitude. Terri jokes that she would have had "test anxiety" if she'd viewed the cancer as a test f r o m the beginning. N e d and Terri believe that the most meaningful thing to come out of the cancer journey is their new experience of the word " love" . T h i s was never more clear to them than on their last wedding anniversary. T h e y felt an overwhelming feeling o f gratitude surrounding their celebration, gratitude that they had found each other in the first place, gratitude that they had shared the cancer experience together, and gratitude that they were both so healthy and happy. N e d and Terr i are not sure why the cancer experience happened to them. T h e y do not think that questioning what "fate" has brought them wil l do any good. T h e y feel that this was their "big test" and that now they can "get on with l i fe" . 83 CHAPTER VII NARRATIVE FOUR: ROB AND SUSAN Rob and Susan had been married three years at the time of Susan's diagnosis with uterine cancer; Rob was then 29 years old and Susan 33. Rob works as a fire inspector and has his own bookkeeping business; Susan is an X-ray technician. Rob and Susan describe their marriage before the cancer diagnosis as "stressful" and "tense". The major factors contributing to this description have been a sense of dissatisfaction with the other's personality and actions, a lack of trust on Susan's part that Rob has been faithful to her, and a frustration on both parts that their incomes did not meet their needs. Susan was "completely shocked" at the cancer diagnosis: there had been no history of cancer in her immediate family. She remembers that her initial shock quickly turned to anger, an anger which has not abated to this day. Susan is unsure of why she feels such intense and lasting anger, but feels that it is connected to her disappointment and hurt with the way her husband dealt with her diagnosis, treatment, and recovery. Rob did not know how to react to the diagnosis. He says it was "quite a shock", like being "hit in the stomach", but that he never considered leaving Susan. He wished that they weren't in the situation they were in, but he just "tried to deal with it". He worked long hours, started working out with weights regularly, got together with his buddies a lot, and "probably drank too much". Susan states that her husband did not comfort her when she received the devastating news that she had cancer and in fact was inattentive and cruel. She remembers that he said that maybe she "spent too much time riding horses" as a child, and laughed as he said it. She also remembers that he seemed to resent taking her to the hospital and having to perform many household tasks himself. She also does not remember much kindness in the way of looking after her or making her feel that he was there for her. 84 Rob acknowledges that he was not the most attentive husband at this time. He says that he is not very good at "that hospital thing", and refers back to his mother's long battle with heart disease, in which she was in and out of the hospital for many years. Rob says that Susan had a lot of other support during this time and that he felt he had to keep things going at home, at his job, and in his business. He says that he did not resent any of the extra work, feeling that it was his contribution to things. He says Susan was aware of how he felt about hospitals, and should not have expected him to "do something I'm no good at". Susan feels hurt and angry that Rob did not take a leave of absence during the time she received treatment. She says that there was nothing preventing him from doing so and that in fact he had been talking about doing so. Rob was worried about their financial situation and did not want to jeopardize that; in fact, he says that he immediately started working extra hours in his home business so that more money would be coming in. He didn't know how long Susan would have to be away from work, so he thought he'd better "get us prepared financially". He says that Susan knew when she married him that he was very "work-driven", and that he only wanted to protect their financial future. Rob also says that the only reason that he and Susan have such a nice house and nice stuff is that he "burns the midnight oil". Susan did have a lot of support from friends and family, but she says that did not mean she didn't need or want Rob's support. Susan describes several instances in which she asked Rob for comfort and support and he was "not interested". Susan notes that since she was staying in a 4 separate bedroom during this time, it was even more important to her to have regular contact with Rob. She says that sometimes she not only did not have regular contact with him, she did not even see him for days. She says that at other times she heard him moving around downstairs, but that he would rarely come to her room. Susan was quite weak at this time and was under doctor's orders to rest, but she was disinclined to come out of her room anyway because of her fear that she would just be hurt by Rob's indifference. 85 Rob says he was very busy and wanted to make sure that Susan was not disturbed and could get plenty of rest. He say that he is not a "sickbed kind of guy", that Susan knows that, and that Susan should have known he was trying to support her in his own way. Rob says that he felt funny about going into the "sickroom" and was not sure of what he could have said or done. He says he does not remember Susan reaching out for support, that usually she was "surrounded with people looking after her". He felt that during much of this time "Susan wasn't really Susan anyway" and he did not know how to adapt to this situation. Rob explains this by referring to Susan's anger, which seemed so intense he didn't know how to cope with it. Susan says that although her anger may have intensified during this time, there had been lots of anger between them before the diagnosis; in fact, she says, their anger with each other had many times led to talk of counselling. Susan remembers thinking at the time of her diagnosis that Rob might use the diagnosis as an excuse to "take off'. Susan feels that she wasn't able to count on Rob when it really mattered, and that all her doubts about him were confirmed by the cancer experience. She talks about a time when she wanted to get a cat and Rob wouldn't agree to it. She feels that it was such a simple thing but that Rob wanted to deliberately thwart her. She also says that he never put any thought into her Christmas and birthday presents. Rob doesn't remember being against the idea of getting a cat. He says he likes dogs better, but that Susan was free to do what she wanted. He says that he's never denied Susan anything. He says that he knows he's "not much of a romantic", but that he surprised Susan twice with trips to Hawaii and the Caribbean. He says "I do what I can". Susan experienced her cancer treatment as "an alone time", even though she was surrounded by support. She felt no confidence in her doctors, but she "just went along" with what they advised. She felt helpless even though she knows she wasn't, that many resources were available to her. She recalls feeling so angry that it "paralyzed" her. She characterizes herself as a smart, independent, competent person, but she could not seem to take control of what was happening to her. 86 F o r R o b , Susan's treatment period went by "like a blur" . H e was not aware of exactly what was happening to Susan, and he says that he probably shut it out deliberately. H e remembers that Susan's mother and sister were at the house a lot and that that made h i m feel that things were under control. Susan was told that her treatment w o u l d result in her not being able to have children. Susan remembers being numb at first and then feeling more anger. She says she felt that it was enough to go through cancer, why did this have to happen too. She and R o b had talked about having children "sometime in the future, maybe two or three years". She had always wanted kids because she came f r o m "such a happy f a m i l y " , but her marriage hadn't ever seemed strong enough to bring kids into it. R o b has always wanted kids and felt that he was ready for them "anytime". W h e n he heard that Susan had uterine cancer, it "hit m e " that maybe "I'd never be a father". H e kept his thoughts to himself but was privately very upset about this aspect of the situation. H e thought about adoption for the first time, but was not enamored of the idea. H e was angry that the doctors seemed so certain about the outcome. H e felt that he didn't know whether he really trusted their judgement, and was annoyed that Susan seemed to accept her cancer treatment without question. Susan felt like her body was "a stranger" to her. She had always been s l im, but she lost even more weight and looked "pale and ghostly". She found l iv ing in her body difficult. She w o u l d dream that she was bleeding profusely. She was given anti-depressants but d id not find them helpful. R o b did not think of Susan's physical body during this time. H e says that he's "squeamish" about such things. H e realizes that he probably didn't want to face the fact that Susan might be "different". Susan had never thought about the possibility of getting cancer. H e r family has had very few health problems, and they have always been an active, health-conscious family . She felt 87 "uncomfortable", in fact, about telling them about the cancer, feeling that she had somehow let them down. She was always the most athletic person in the family , and had w o n many prizes in equestrian events. She knew that her family w o u l d support her, but was worried about the pain it w o u l d cause them. She thought her 30s w o u l d be "a great time, m y mother said it was the best time in her l ife" . R o b knows a lot about "what illness can do to a f a m i l y " . H e doesn't like that sickness can have such power over people. H e saw Susan's cancer in this light, as a threatening force that w o u l d bring unwanted change to his life. Susan saw her cancer as an "intruder" in her life. She felt great anger at the cancer, or at least at what it was doing to her. She remembers that she had a vague image of the cancer as a "green blob, m o v i n g around like Jello". She never thought directly about it, but always indirectly, and in this way she protected herself f r o m "going crazy". R o b says he can't imagine what it's like to be told y o u have cancer. T o h i m cancer is very' powerful , not just the disease but the very thought of it. H e always tried to avoid thinking about the cancer itself. W h e n Susan was too overwhelmed with things, she w o u l d meditate. She says that sometimes she could and sometimes she couldn't. She also thought about where she was going in life, "were things good or bad or what". She notes that she went to a counsellor briefly but that it didn't seem to help her, she just "got angry" at the counsellor. She felt very grateful for the support of her family , f r o m the daily visits of her mother and sister to the "back-up strength" of her father. She didn't eat much, because f o o d was not appealing to her. She remembers the first time she put on "one of m y regular outfits", a flowered blouse and beige skirt, and that she thought she looked "skinny but nice". She was surprised at her interest in her looks. She says that i n a way, maybe her anger helped get her through things, too: "I just blasted m y way through the hospital s t u f f . R o b i n and Susan felt that the cancer diagnosis d id not feel like it occurred early in their 88 marriage. T h e y cite their three years of marriage and a long period of knowing each other previous to the marriage as the reason for this. O n the other hand, they think that the cancer occurred before they'd had a chance to work out their problems, so in a sense they had a "new" marriage. T h e y feel that since their marriage has been "eventful", they have more "married l i fe" behind them than most couples in their situation. R o b feels that the experience of Susan's cancer has made h i m "tougher". It really made h i m appreciate that a person can be dealt a surprise blow at any time. H e now feels better prepared for "what life throws at y o u " . Susan feels that although her body has changed, the most profound change has been in how she thinks about life. She feels that now that something so terrible has happened to her, she's not concerned about the minor things in life. A l l o f her concerns about getting ahead seem trivial now. She wil l never look at a child again without feeling a sense o f loss and pain. She believes that she has changed in some deep way that she cannot really explain. R o b is working harder than ever. H e feels that he's even more driven now than before. H e doesn't think of this as a change, but rather as a response to a "wake-up ca l l " . H e likes to think that he can rise to any occasion and come out of it "on top". H e hopes that all his hard work w i l l "pay o f f ' . H e says he has no time these days for social activities, and anyway he feels like he doesn't really "fit i n " with his friends anymore. Susan feels that R o b is too concerned with being "the tough, macho business guy" . She no longer looks at R o b as her protector, she realizes now that she is her o w n protector. She believes that w o m e n are "tougher than men anyway". She says she has no patience with most men, "they just don't get it". She has revived an interest in feminist literature, and feels most comfortable around " m y w o m e n friends who get it". She says that she feels both stronger and weaker now. She can't imagine anything she can't handle, but she also feels quite "weepy" most of the time. R o b and Susan both say that their marriage is no stronger, but also no weaker, than it was 89 before the cancer experience. R o b is "just taking it day by day". Susan is "still recovering" f r o m the cancer. There marriage is therefore in a "state of f lux" , and they are unsure exactly where they stand as a married couple. In fact, they don't really feel like a married couple. T h e y see friends and do things separately. T h e y feel apart, but feel the marriage vows "still mean something". T h e y can't see how to fix things, but think "anything's possible". R o b has been thinking a lot about the children issue. H e feels that adoption is on his m i n d a lot more now, but that he's "not sure" about it. H e doesn't know w h y he and Susan haven't talked about this issue, he says he would like to. Susan feels that the more energy she gives to the "whole marriage thing" , the less she has left for herself. She feels that she should not have to think about children right now, that it is too painful. She says maybe she should be recovered by now, but "it's l ike I'm just starting". R o b and Susan feel that they have always had problems communicating, and that the cancer experience has made this even more true. R o b doesn't know exactly w h y this is so, but that it probably has to do with "trust". H e feels that Susan doesn't trust h i m and never has. H e says that he's been aware "since day one" that he and Susan w o u l d have "mega conflict" , but that he l iked "that sort of thing" between h i m and a woman. H e remembers that on their first date he and Susan had a "huge argument", but that it "got the juices f l o w i n g " . H e also remembers that on that date Susan said she l iked the way he "kept her guessing". He's not sure i f his marriage is "just normal, or wacko" . Susan says that she knows what a marriage is "supposed to be l i k e " because of her parents' marriage. She says her o w n marriage has been very different. She says that f r o m the time she started dating R o b , she "didn't really trust h i m " . She says he is "very charming, very macho" , that he "flirts a lot", and that " w o m e n go for it". She is certain he has been unfaithful, but she has tried to ignore it. In spite of this, she has always found R o b "very attractive", and the cancer experience has not changed that, "but yet it has". R o b feels that there is nothing he can do or say that wil l change the situation. H e likes that 90 he and Susan have always had "that spark". H e says he still loves Susan, but that sexual relations "seem to be in the past". H e doesn't know why this is so, but feels that Susan knows and hasn't told h i m . H e says that he expected her to return to the marital bedroom after a period o f time, but that she hasn't done so. H e says she has no reason not to trust h i m . Susan feels that she is not ready for "the marriage thing". She feels angry that R o b seems to "expect something". She believes that R o b has been recently unfaithful. She wonders how m u c h longer she can put up with her feelings about this. She says she "has no proof", that after all she "was so weak I could hardly get out of bed" . She feels that her r o o m is her "sanctuary", and feels " k i n d of like a prisoner, but a very safe prisoner". She says she needs time to think. R o b says he doesn't expect anything f r o m Susan. H e feels that he has been very patient. H e is wi l l ing to be patient "as long as I need to be". H e feels that there has been a lot of pressure on h i m f r o m Susan's family . H e does not know exactly what is expected of h i m , and nothing has been actually said, but R o b feels a "constant pressure". H e has no idea about what might happen in the future, so he just keeps to his "usual routine". H e realizes that Susan wanted "more attention" during her treatment period, but now she "doesn't seem very interested in any attention". H e feels that there is a " w a l l " between them. Susan says she is "too angry" to deal with R o b right now. She feels that things get a little easier day by day and in the future she can imagine sorting things out, but not right now. She says "anyone w o u l d be angry" after what she's been through. She says "I need to do this in m y own way" . R o b and Susan both feel that the cancer experience has had a deep and lasting effect on their marriage. T h e y are not sure how m u c h of this is a direct result of the cancer experience and how m u c h relates to the state o f their marriage prior to the cancer diagnosis. T h e y w o u l d both like to arrive at a more comfortable, contented place, but as of yet they are unsure about how to do this and what it wi l l involve. T h e y intend to see a counsellor through the cancer clinic where Susan received her treatment. T h e y say they both still love each other. 91 R o b and Susan have "no idea" why the cancer experience happened to them. Susan has thought about it a lot but hasn't come up with anything. R o b feels that Susan needs to work this out because she's obviously very angry about getting cancer. R o b and Susan say they expect that they wil l have to deal with this issue in counselling. 92 Chapter VIII N A R R A T 1 Y E A N A L Y S I S After the narratives were validated by the participants, they were analyzed by the researcher to elicit narrative themes and the meanings revealed in them. E a c h theme is organized under a triad of names in order to best capture the complexity of the cancer experience. S o m e of the meanings are explicit in the narrative, whereas others are implicit . Some of the themes reflect the commonality and universality of the cancer experience, whereas others embrace meanings that are unique to young married couples. T h e validation of narrative themes was an ongoing process. Trustworthiness, not truth, was the a im: the latter presumes the existence of an objective reality, while the former celebrates the shifting, subjective realities expressed in stories. Narratives are products o f an interpretive process; remembered experience is a selective reconstruction. Trustworthy narratives capture the selection as offered in the particular moment. A l t h o u g h a variety of sources were used to test the narrative themes for qualitative validity, the final check was made against Riessman 's (1993) four criteria. F i r s t , the narrative themes presented in this analysis are persuasive: they are plausible accounts of transcribed experience. T h e y reflect meanings contained in actual conversations. T h e y contain subjective personal truths despite the limitations of rhetorical writing! Second, the narrative themes show correspondence between the interpretations found in the raw data and the interpretations made in the narrativization process. T h e work was taken back to the participants to engage them in the validation process and ensure the highest level of correspondence. In this way credibility is established for narrative themes that are embedded in verified narratives. T h i r d , the narrative themes show coherence o f interpretation. There is a global coherence, in that the themes relate to the overall goal of the narrators to communicate meaning. There is a local 93 coherence, in that the themes are intrinsically connected to the stories told. A n d there is a themal coherence, in that the themes represent recurrent strands of meaning expressed explicitly or implicitly in the narratives. Fourth, the narrative themes have pragmatic use, in that they provide research interpretations that others can test against the empirical data of the narratives. In addition, the researcher offers the research work with the practical understanding that methodology and interpretation bear the imprint of the researcher's assumptions and values. T h e results of this analysis were verified by an independent reviewer. Schematic Representation O f Narrative Themes In conceptualizing how narrative themes might relate to the cancer experience as a l ived process with some structural integrity, various models were considered. Linear models did not capture the ebb and f low of the experience; cyclical and spiral models d id not represent the subtle but discernible movement through domains of meaning. T h e researcher struggled to achieve a conceptualization that could encompass both temporally-linked impact stages and diffuse, shifting emotions and experiences. S u c h a model w o u l d capture the cancer experience as a dynamic , ongoing process that nevertheless contained discrete, recognizable challenges or themes throughout its course. These themes w o u l d appear in the model as a complex, interrelated series of meaning-making experiences that in their unique entirety w o u l d define the particular cancer experience o f each individual or couple. In so doing, the model w o u l d also reframe the concept o f recovery as an intricate, f lu id , ongoing process that is inextricably linked to the existential choices made in the face of each meaning-making challenge. T h e model w o u l d also need to be compatible with the narrative approach and thus capable of representing the natural progression and climactic nature of storied experience. Af ter m u c h deliberation, an arcuate, or arc-shaped, model was chosen to represent the narrative tension of the shared cancer experience. W i t h i n the model , three domains o f experience 94 are identified: Initial Impact, Marital Cohesion , and Resolution and G a i n . T h e domains are not meant to represent temporal phases, but rather clusters of meaning-making opportunities grouped according to processual needs and challenges. E a c h domain consists of five themes representing the meaning-making challenges that universally defined the cancer experience for the participant couples and thus became an integral part of their shared narratives. A l t h o u g h the participants m o v e d back and forth through the themes in a non-linear, dynamic manner, there was a certain alignment between domain and process. T h e first domain, Initial Impact, arises out of the cancer diagnosis and encompasses themes of shock, disorientation, invasion, isolation, and dissonance. Shock, disorientation, and invasion are immediate and often visceral reactions to the diagnosis, and are generally resolved relatively quickly in order that a sense of marital congruity and coherence can be maintained. In the case of isolation and dissonance, an ongoing application is evident, and in fact these two profound existential challenges had not been fully resolved by any of the participants. T h e second domain, Marital Cohesion, consists of themes of collaboration, devotion, hope, connectedness, and humour, and represents concepts that are central to marital cohesion. These themes are situated at the bow of the arc, at the point at which it could " b e n d or break", to symbolize their crucial role in shared meaning-making through the main body of the experience. It is thought that the presence of these themes within the marital narrative allowed the tension of the cancer story to reach a certain climactic point without breaking under the pressure of the experience' s traumatic effects. T h e third domain, Resolution and G a i n , embraces themes of acceptance, creativity, pride, maturity, and control. T h i s domain reflects themes that, while present throughout the experience, were aligned with the successful negotiation and resolution of the meaning-making challenges presented by the cancer experience and the marital gains that arose out of this shared journey. Figure 1 illustrates the above conceptualization o f the cancer experience: Shock/Trauma/The Body Blow Disorientation/Confusion/Uncertainty \ Invasion/Intrusion/Presence of Other \ Isolation/Separation/Separateness \ Dissonance/Disruption/Incongruity \ Collaboration/Reciprocity/Responsibil ity Devot ion/Loyalty/Constancy Hope/Optimism/Positivity Connectedness/Compassion/Empathy / Humour/Playfulness/Fun j Acceptance/Accommodat ion/Grace / Creativity/Flexibility/Adaptability / Pr ide/Respect/Heroic Stature Maturity/Growth/Readiness Control/Empowerment/Mastery Figure 1: Arcuate M o d e l of the Cancer Experience 96 T h e Cancer Experience: D o m a i n s and T h e m e s of M e a n i n g T h e fo l lowing discussion describes the fifteen themes, each represented by a triad of names, that make up the three domains o f the cancer experience. D o m a i n O n e : Initial Impact Shock/Trauma/The B o d y B l o w T h e word "shock" runs through all o f the narratives. Ultimately, after the initial emotional trauma is accounted for, shock aligns itself to a disruption of expectations. H o w can it be cancer, an event so totally unexpected in the life story, a temporal affront so unthinkable it is more shocking than the diagnosis itself? T h e disruptive force of the event immediately shatters not just day-to-day familiar existence, the "taken-for-grantedness" that is so comforting in everyday life, but also the envisioned future. In addition, the word "cancer" carries its o w n story, and hence the ability to shock in its o w n right. Powerful cultural narratives invoke their power: cancer the dread disease, cancer the killer, cancer the mutilator. T w o couples are unable to even say the word to each other. Refusing to name has a primal protective function: if the word isn't spoken, we can protect each other against the encroaching meanings of cancer as destroyer and killer. Three spouses feel the shock of the diagnosis in terms of an actual physical assault on the body, thus embodying the blow. Brad is "bowled over" ; N e d feels like he has received "a blow to the chest"; R o b feels like he's been "hit in the stomach". If I absorb the body blow, w i l l m y wife feel less pain? Cultural narratives set about reframing the shock into recognizable meaning: if fighting cancer is a "war", then isn't cancer the enemy and m y wife's body the battlefield? Disorientation/Confusion/Uncertaintv T h e shock of the diagnosis tears apart the familiar marital narratives. Disorientation, confusion, and uncertainty set in . T h e comfort o f an ordered life is lost. Thoughts immedately go 97 to the marriage itself: what wil l happen, what wil l this mean, how will m y partner handle this, wi l l he stay, w i l l she still love me? Uncertainty is registered even as the doctor speaks in words of certainty. Disorientation is reflected off the cold , white walls of the clinic . T h e narratives f i l l with words and actions of confusion and disruption. What lies ahead is a " b i g mystery" (Brad). T h e world "turns upside d o w n " (Ellen). T h e diagnosis "freaked me out" (Gerry). N o r m a l activities can't prevent feeling "out of sorts, disconnected" (Ned and Terri) . There is a "constant pressure" (Rob). It feels like "going crazy" (Susan). B r a d , E l l e n , Gerr i , and R o b turn to alcohol, f o o d , and/or drugs to cope. A n g e r erupts between G e r r y and L i n d a and simmers between R o b and Susan. Individual trauma is interwoven with marital trauma. T h e couples struggle with the diagnosis and proposed treatment. W h y is the treatment protocol so cut and dried? W h y aren't more treatment options presented? W h y are we in and out o f the office without having had the chance to tell our story to the doctor? Questions about involvement and responsibility present themselves: W h y a m I accepting this without question? W h y is m y spouse doing the same? What is m y spouse's responsibility in this? W h y isn't m y spouse out there doing research that could save m y life? Gui l t , blame, hurt, and disappointment become part of the narrative. A complex chain o f meanings arises f r o m a brief initial contact with the foreign meaning system of the clinic . Something is up with friends. Couples with cancer and friends without cancer are now different f r o m each other. W h y isn't this like any other illness? W h y should we have to negotiate a way to fit the cancer into our friendships? Distance f r o m friends is mirrored by distance between spouses. Roles change, identities shift. T h e realness of everyday routine becomes an anchor. Brad continues with his daily chores; N e d and Terri continue to have an active sex life ; L i n d a tries to maintain order in the household; R o b increases his workload. Disturbing dreams and images intrude. Cancer has B r a d "by the throat". H e is " i n the dark", it is "sink or s w i m " . E l l e n "is in the middle of this quiet". Terri stands in a hot shower but is 98 "ice c o l d " and "frozen". She is on a beach playing with broken glass. Gerry is wearing a red coat. Susan has a green blob inside her body. She is paralyzed. She is bleeding profusely. E m b o d i e d confusion abounds. Where is the cancer exactly? What w i l l happen to this familiar body? W h y is there cancer when the body looks normal? H o w can there be cancer in this young and healthy body? What does a changed body mean for the relationship? Invasion/Intrusion/Presence o f Other A s the cancer invades the spouse's body, it also invades the l ived world o f the couple. Brad and E l l e n fight a menacing creature capable of destroying their marriage; N e d and Terri confront an enemy invading their territory. Bodies with cancer become alien bodies, as the presence of other separates the person f r o m the body. In the threatened territory of B r a d and E l l e n and N e d and Terri , an alliance is formed to defend and fight and a stance adopted that is proactive and collaborative. Metaphors are of subdual through combined strength and w i l l . Gerry and L i n d a and R o b and Susan do not j o i n forces. T h e invasion is met singlehandedly. Isolation/Separation/Separateness F r o m the moment of diagnosis, isolation, separation, and separateness are part of the shared cancer experience. L i f e together becomes separated between "before cancer" and "after cancer". T h e course of the marriage is sharply separated into the marriage of the past and the marriage of the present. T h e marriage is suddenly located within a different reality. Partners, friends, and relatives act differently. T h e body changes. D a i l y routines are different. Support f r o m spouse, family , friends, and pets does not assuage a profound sense of uniqueness and solitariness. N o one understands. T h e marriage is still new, so the demarcation into past and present married lives is especially painful. There has not been time to establish or enjoy the marriage of the past, and now it has been 99 taken away forever. Isolation and separateness within the marriage are strange, unfamiliar feelings. T h e close, romantic togetherness and unbounded future of early married life are suddenly threatened. N o w the spouse with cancer is not just a partner, lover, and friend, but also a cancer patient. It seems like no matter how much love, care, and support the caregiver spouses provide, they cannot penetrate the barrier of "other-ness" that now surrounds the partner with cancer. It seems like no matter how much the spouses with cancer appreciate the support, they do not understand what the caregiver spouse is going through. E l l e n realizes immediately that it is "the end o f 'my former l ife '" . She and B r a d go through the treatment period "very isolated" f rom each other. E l l e n goes back to work and Brad is completely unaware that she is seriously depressed. E l l e n despairs at their attempts to regain their former sexual selves. B r a d goes doggedly through his daily routine, trying hard to maintain a sense of order. Gerry and L i n d a have completely separate experiences of the cancer. Gerry isolates himself f r o m both L i n d a and his former life. H e puts up a wall between them by acting completely differently f r o m the husband she knows. Gerry and L i n d a don't communicate and they don't have sex. Gerry tries to put up another wall between h i m and his boss. H e reinforces his isolation by retreating into drugs and lashing out in anger. N e d and Terri lie in bed, consumed with their o w n private thoughts. Terr i keeps her cancer treatment self private so she can conceal her pain. She goes off by herself without telling N e d . N e d and Terri can't connect with their jobs or their friends. R o b and Susan have no real contact during the cancer treatment period. Sometimes they do not see each other for days. Susan removes herself f r o m the marital bedroom. H e r anger is l ike a wall between them. T h e y remain alone with their hurt and frustration. Isolation and separation for these young couples has a particularly painful connotation. If we are apart, is it because we are not going to stay together? Is m y spouse going to leave me? H o w 100 can somebody love me or desire me or want to be with me if I have cancer? It is this meaning that underlies all of the isolation and separation, that lays bare the inchoate fear of abandonment. M o r e and more, there is a sense o f separateness f r o m friends. It is expected that there w i l l be a certain amount of distance in the face of unfamiliarity and confusion. It is not expected that there wil l be an apartness, a different stature, a new identity. Other young couples have problems, but they don't have cancer. N o one can possibly understand. T h e couples look for ways to make sense of their isolation, separation, and separateness. E l l e n thinks to herself, B r a d can't understand because he's a man: it's not his fault. L i n d a excuses Gerry 's withdrawal: after all , he's just had cancer. N e d lets Terri be the warrior on the solitary quest, even though he wants to be. F o r R o b and Susan, the solitude in personally productive but compounds their loneliness. D i ssonance/Di sruption/Incon gruitv T h e cancer does not "fit". It does not fit now and it does not fit here. It is harsh, disharmonious, discordant. It is strange, weird, ridiculous. W h y doesn't the dissonance ebb or recede, like the shock and confusion do? Three types of dissonance are almost universally registered. First, the experience is cohort-dissonant: it is a totally unexpected event at this particular time in life. T h e consequential meaning is a profound sense of intersocial disruption that creates a disengagement f r o m the peer group. Second, the diagnosis is lifestyle-dissonant: it is not congruent with the active, health-conscious lives being led. T h e consequential meaning is a loss of faith in causality and individual control. T h i r d , the diagnosis is genetically dissonant: there is no cancer, or only minor cancer, in the immediate families. T h e consequential meaning is a sense of unfairness and indiscriminacy. 101 D o m a i n T w o : Marital Cohesion Collaboration/Reciprocity/Responsibilitv T r u e partnership can take years to establish. Y o u n g adults are still seeking to understand the nature of marital obligation, duty, responsibility. Marital vows are words, not yet deeds. Marital fealty is an idealized, romantic bond. N o decalogue of marital rules governs moral actions. Collaboration is understood in terms of building marital security. Individual narratives remain strong, embracing separate plots of personality development, career opportunity, family obligation, social establishment, and existential positioning. Cancer changes all that. Couples instinctively realize that this is the b i g test. T h e challenge is clear: find a way to make the cancer experience a partnered one even if y o u are still working out the rules of partnership. C o m e together and throw everything you've got at the cancer even i f y o u don't know what y o u have to throw. Construct a mutually authored story even i f it wasn't mutually enacted. U p o n diagnosis, flight or detachment f r o m the cancer presents itself as an option, with no thought in that fleeting moment about collaboration or obligation. Brad , N e d , and Terri imagine running away; Gerry actually removes himself in spirit f r o m his regular life. These responses are momentary escapist fantasies, not the end of the story. N o one runs away. A l l of the non-affected spouses accept that it is their role to keep things going and that this w i l l mean extra duties. A l l of these spouses ascribe meaning to their activities, seeing them as a way to maintain not just normalcy and a quality environment but also connectedness and cooperation. E a c h couple struggles through the cancer treatment period. Responsibility and connectedness are not enough in themselves to ensure a mutual construction of meaning. Adjustment and recovery are elusive, mutable concepts. There is a sense that each narrative could " g o either w a y " , as E l l e n felt throughout the experience. Three of the narratives are collaborative, reciprocal, and show a shared responsibility o f construction. F o r Brad and E l l e n , Gerry and L i n d a , and N e d and Terr i , these are true co-narratives. 102 T h e story told has a consensual plot and the authors exhibit mutual emplotment throughout. M i n o r differences of fact are accepted and incorporated. M a j o r differences of situation and experience are contextualized in a mutually acceptable way. There is a sense that collaboration has been the sine qua non of the experience all along. Brad and E l l e n differ about cancer having control over them, but f ind a way to agree about how they met the power of the cancer with the power of their strength. N e d and Terr i disagree about how long their post-treatment malaise lasted and w h y it happened, but incorporate this as a mutual learning experience rather than an obstacle. Gerry and L i n d a have completely divergent attitudes toward sickness, but allow themselves be different and still maintain a unity of purpose. Differences are a distinctive, not destructive, part of marital identity. Reciprocity of intent fosters acceptance o f disparity. T h r o u g h a shared recounting, differences are seamlessly incorporated into the marital history. F u l l of hostility, disunity, and isolation, R o b and Susan's narrative is a collaboration of sorts, but has no reciprocal understanding. These are two individuals w h o are co-authoring a story o f hurt, disappointment, and loss. Nevertheless, their story arises out o f shared experiences and represents a mutually constructed marital history. Responsibility is the fulcrum o f these cancer experiences. Cancer first presents these couples with a choice: to confront the fact that the experience might shake the marriage to its foundations, or to ignore it. These couples face this responsibility head on , immediately accepting that the experience is going to affect their marriage. Every spouse becomes part of the task of resolving this issue, and accepts responsibility for doing so. A n d f r o m that point on , each spouse takes personal responsibility for getting their spouse, themself, and the marriage through the cancer experience as best they can. Devotion/Loyalty/Constancy There is an eloquent omission in these narratives: love. It is rarely mentioned, and yet 103 unmistakably present. M o s t importantly, it is present not in spoken words or romantic gestures but as a steadfast devotion, a deep loyalty, and an unwavering constancy. Hope/Qptimism/Positivity Hopefulness and optimism illuminate all of the narratives. H o p e is a complex, highly subjective entity, taking on many meanings in the cancer experience. H o p e is a signifier of health, and those who are optimistic are healthier. H o p e is a representation of positive thinking and can effect disease outcomes. H o p e is a shield against negativity. H o p e is a shared understanding o f the world. Hopefulness belies hopelessness. In these shared cancer narratives, hope does not have to be explicitly spoken or described. H o p e does not have to have a particular object or outcome as the goal. There is an indistinct, generalized sort of hope, more reactive in stance but proactive in terms of intended emplotment. H o p e is not "I hope I don't have to lose m y breast" or "I hope I can f i n d a miracle cure". H o p e is more a dynamic life force, a glass half f u l l , a sightline that contains a ful ly realizable marital future. H o p e is also a focus, a gathering of intentions. H o p e preserves the cherished goal of restoration. E l l e n and B r a d hope that honesty wil l survive anguish, that E l l e n wil l bring life back to normal when she returns to work, that chemistry and passion wil l endure. Gerry and L i n d a hope that withdrawal does not mean defeat, that words spoken in anger can be forgiven, that an emotional meltdown wil l not lead to a marital breakdown. N e d and Terri hope that they can protect each other f r o m pain, that they wil l be able to handle sexual differences, that they can return to their former marital life and just p ick up where they left off. R o b and Susan hope that they can find understanding for their individual limitations, that they can face their deep feelings of hurt, that they can repair the damage to their marriage and realize possibilities still unspoken. H o p e and fear are formidable opponents in cancer stories. It might also be said that without fear and distress, there would be no need for hope. In these cancer narratives, distress, and therefore fear, gets its acknowledgement but at the same time does not threaten hope. E l l e n is angry 104 and frustrated most of the time with Brad , but hopes he w i l l continue to provide solace with his presence. Gerry is devastated by having to reveal his secret, but hopes L i n d a wil l somehow understand. Terri is sad about the loss o f her body as she knew it, but hopes it hasn't changed her sexual relationship with N e d . Susan cannot look at a chi ld without feeling pain, but hopes that someday she wil l be able to think about adoption. A n d so hope and distress coexist without compromising the sacrosanct place that hope occupies in each narrative. Connectedness/Compassion/Empathy , F a m i l y connectedness is a leitmotiv in these stories. A l l o f the couples speak often and lovingly about how supportive their families are. There is a deep connectedness that finds expression in steadfast, day-to-day support, but has a more important meaning. T h i s is a k i n d of "independent dependence", a connection to parents and siblings that allows the marriages to maintain autonomy i n the face of needing help. A s the treatment protocol is accepted, the spouses with cancer are obliged to give up their regular schedule of activities to focus on treatment and recovery. T h e caregiver spouses take on the burden of managing practical domestic matters, providing emotional support, and l iv ing with a person w h o is i l l . In this way, Brad and N e d stay intimately connected and involved. L i n d a searches for a way to restore connectedness. R o b shoulders more responsibilities, hoping it might give h i m a chance to stay connected and to show connectedness. M o m e n t s o f compassion and empathy between spouses touch the heart and show an even deeper level o f connection. B r a d tries to put himself i n Ellen's shoes, tries to imagine what it w o u l d be like to have a body part cut off, tries to understand what she's going through. E l l e n is tormented by her isolation and feels B r a d can't possibly understand, but i n the midst of her turmoil wonders how her husband is coping. S o m e time later, she starts her "real" recovery by thinking about what B r a d went through. L i n d a hears something in Gerry 's voice that breaks her heart. She tries to understand his fear o f cancer. N e d thinks about Terri having to endure treatment and tears come to 105 his eyes. Terri tries to spare N e d f r o m having to see her pain. T h e gentle presence o f pets provides unconditional caring. Compass ion and empathy allow a true sharing of the pain of the experience. Humour/Playfulness /Fun B l a c k humour, gentle teasing, silliness, whimsicality, irony, Superman analogies, M o n t y Python, champagne in bed, comical-looking pets...all represent humour and frolic as a way to cope, but more importantly are a l ink between pre-cancer identities and new lives. H u m o u r proves that the relationship has survived and has remained more or less intact and f a m i l i a r . Three of the couples were bonded through laughter f r o m the start o f their relationships. Brad can always make E l l e n laugh; N e d tries to break Terri up even as they cry together about the diagnosis; Gerry and L i n d a find their way back to each other and soon are sharing jokes. H u m o u r is instrumental in Gerry 's self-discovery: he pokes fun at himself, he recognizes the humourous side of his phobia, and he points ruefully to the irony o f fate. There is a sense that humour is in itself a powerful means of communication, a l lowing painful feelings and thoughts to be expressed in a way that is both comforting and comfortable. It is a telling indication o f the pain reflected in R o b and Susan's narrative that it is so starkly devoid of humour. D o m a i n Three: Resolution and G a i n Acceptance/Accommodation/Grace Cancer is u n c o m m o n l y difficult to accept. Denia l offers protection against pain. Facts and realities retreat against the power of emotions and images. D e n i a l o f cancer has no place in these cancer stories. There is an uncommonly strong strand o f acceptance running through the narratives. These are strong, intelligent, accomplished, assertive individuals: passivity is not behind this acceptance. T h e diagnosis is accepted for what it is, without any o f the "it must be a mistake" or "I want a second o p i n i o n " sentiments often expressed. N o attempts are made to find a miracle cure. N o one goes into denial about the existence of cancer. N o one bargains with G o d . S h o c k i n g though the diagnosis is, it is accepted. 106 Little effort is expended on developing an a priori cause for the cancer, usually one of the first steps in restoring coherence to a world turned upside down. Cancer makes an enormous impact on these couples' lives, but they do not put their psychological energy into answering the question " W h y did this happen to me?" or " W h y did this happen to us?". R o b makes a sarcastic reference to Susan's cancer being connected to riding horses, but Susan does not take up this etiological challenge. T h e couples accept that cancer has happened, that it has happened to them, and that they have to move on to dealing with it as best they can. T h e meanings that the cancer subsequently takes on , therefore, cluster around the effect of the disease rather than the cause. Changes in physical bodies and the resultant effects on perceptions of gender and sexuality are struggled with but accepted. In three of the narratives, the cancer treatment results in profound physical changes for the affected spouses. E l l e n and Terri retain a sense o f wholeness despite losing a part o f themselves; their husbands perceive mainly a cosmetic difference. R o b and Susan have not yet completely absorbed the consequences of their loss, but have accepted the reality of what happened. Acceptance depends on interpretation of the event. T h e meanings that E l l e n , Terr i , and Susan ascribe to their loss is deeply connected to their spouse's attitudes. B r a d and N e d do not expect that any essential change wil l happen, whereas R o b is fearful f r o m the beginning about what changes might take place; Brad and N e d help their wives confront the reality of their changed bodies, whereas R o b keeps his distance; B r a d and N e d continue to see their wives as sexually desirable, whereas R o b does not know how to deal with the changes in Susan's sexual identity. Rob's stance toward accepting illness into his life, as determined by prior experience with his mother's heart disease, causes discomfort, even squeamishness, with Susan's illness, especially the embodied part of it. Meanings learned in the family context cause severe disruption in the marital context. F o r L i n d a and Gerry , the physical changes are m i n i m a l ; L i n d a , however, accepts the cancer readily and in fact is the only spouse not surprised by the diagnosis. T h e above constructions of meaning are inextricably connected to each individual's 107 perception of embodiment and the acceptance of disease as a bodily reality. There is a sense in three of the narratives (Brad and E l l e n , N e d and Terr i , and R o b and Susan) that the cancer is not just unexpected, but an occurrence of body failure in bodies that should not have failed. T h i s is the one area in w h i c h acceptance has not occurred, but for which accommodation has been made. There may be a feeling of shaken faith, because healthy lifestyles and good genes have failed to protect these bodies f r o m cancer, but there is also a willingness to relinquish past conceptions of embodied self and accept new ones. A c c e p t i n g cancer is often an existential exercise. E a c h person finds unique questions to ask, contemplates different aspects of life. Brad , with a lot of solitary time to think while doing chores, thinks about how many people and animals depend on his presence in the world. E l l e n goes on a retreat, sees her situation in a new light, and discovers the spiritual value of gratitude. Gerry goes through an agonizing, isolated period in which he questions his whole life, including his marriage and his job . L i n d a is shaken by Gerry's behaviour and questions the reality o f her marriage. N e d and Terri experience a spiritual dimension in sex. R o b asks himself "What's the point?" in regards to all his hard work. Susan finds comfort in meditation and wonders whether her life is going in the right direction. Acceptance and accommodation i m p l y a forgiveness of the imperfection of self and other. T h i s state o f grace arises out o f each spouse's struggle to keep f rom turning the inevitable pain and resentment of the cancer experience into condemnation and enmity. A c c o m m o d a t i o n of exterior change both arises f r o m and contributes to an interior accommodation of new feelings, beliefs, and values, a cyclical process that is ongoing. Creativity/Flexibility/Adaptability It is a truism that cancer necessitates individual and interpersonal role shifts that challenge the very core of the self. W h e n enumerated, however, the arduousness and profusion of the role adjustments for these spouses are striking: 108 • B r a d does not understand the importance that E l l e n places on her role in the workplace • E l l e n dreads taking on the role of dependent sick person in her family • B r a d realized how many people and animals depend on his role as the " R o c k of Gibraltar" • E l l e n has to redefine her role as a strong, independent w o m a n • B r a d is confused about his role as sexual partner • E l l e n mourns the loss of her role as an assertive sexual partner • B r a d feels like he is the vi l lain when he is trying his best to be heroic • E l l e n feels pressured to take on the role of cancer survivor when she isn't ready to • B r a d tries to be Ellen's protector but knows she is uncomfortable with that role • E l l e n is able to step back into her role as wife when she realizes what Brad's role has entailed • Gerry abdicates his role as active marital partner • L i n d a takes o n the additional role of marital caretaker • Gerry reverts back to his high school self as a protective, safe role • L i n d a wonders if Gerry's previous role was a sham • G e r r y doesn't want the role of coward • L i n d a is placed in an uncomfortable new role with friends • Gerry is able to accept a new role as "cancerphobia poster c h i l d " • L i n d a realizes that she brings her manager's role home f r o m work • Gerry is forced to acknowledge his role as someone with cancer who may have a recurrence • L i n d a takes on the role o f health watchdog • N e d steps immediately into the role of Terri's protector • Terri has to give up her role o f potential mother • N e d maintains his role as jokester in the face of trauma • Terri approaches her cancer in the comfortable role of project manager • N e d takes on new roles around the house • Terri puts on a brave face, playing a role she thinks is expected of her 109 • N e d worries that his breadwinner role is diminishing • Terri experiences a dramatic role change at work • Ned's role with his male friends changes • Terri's friends continue to place her in the sick person role • R o b cannot fulfill the caregiver role Susan expects of h i m • Susan agonizes over not taking on a more proactive role after her diagnosis • R o b thinks he has to take on the role of financial steward • Susan wil l never take o n the role of pregnant woman • R o b thinks he might never play the role of father • Susan's role as her family's top athlete is in doubt • R o b leaves his social roles behind • Susan is intrigued that she still sees herself in the role of attractive woman • R o b doesn't accept his role as unfaithful husband • Susan is a prisoner in a sanctuary of her o w n making A s the spouses try to adjust to these role changes, the marriage itself goes through role and identity changes, putting additional pressure on each spouse's sense of self. S o m e o f these changes take place within the family context, such as N e d and Terri taking on less responsibility. T h e most important role changes, however, take place within the peer group context: • Brad and E l l e n feel that the cancer experience has set them apart f r o m their circle o f friends • Gerry and L i n d a feel awkward around their friends • N e d and Terr i feel a sense of distance f r o m their friends • R o b and Susan feel they don't fit in with some or all of their friends. T h e experience of cancer also has a powerful identifying effect on the couples that is embedded in the affected spouse's identity as a cancer patient and survivor. T h e couples now (and possibly forever) live within their identity as a cancer-affected couple, even though they are well past the treatment period. Var ious forces combine to entrench this. Remembered experience is 110 powerful and indelible. T h e possibility of metastasis and recurrence is a constant reality. T h e iterative process of medical fo l low-up is unavoidable and establishes a continuing identification with cancer patientness. F o r these young couples, however, identification with cancer is mostly about social positioning. These couples face the unexpected, irreversible reality of feeling set apart f r o m others in their immediate peer group by virtue of being "the couple who had cancer". In the social narratives of friendship, these couples are now "the friends who had cancer". O l d people have friends w h o have cancer, not young people. B e i n g young is about having fun, travelling, parties, sports; it is not about hospitals and medicine. T h e couples are tired of all the role shifts demanded of them and want to return to their familiar social enclave. It isn't possible, and they must make yet another role adjustment, to adjust to a new, unchosen, unwanted marital identity within a peer group in which identity is all-important. T h e challenge to find creative ways to adjust, to remain flexible and adaptable, continues. Pride/Respect/Heroic Stature F o r B r a d and E l l e n , G e r r y and L i n d a , and N e d and Terri , telling the cancer story is an opportunity to express pride about their marriage. B r a d and E l l e n are proud that they went through the cancer experience and " d i d O K with it, learned f r o m it", that they "passed the test", that now they are " S u p e r C o u p l e " . G e r r y and L i n d a are proud that they faced their issues with honesty, that they have such a high level of trust, that they are "getting there" in building the perfect marriage. N e d and Terri are proud that they faced the cancer with courage, that they survived the " l o n g trek", that they have the most secure marriage that they know of. F o r R o b and Susan, they cannot feel pride in a marriage that both are so unsure of: R o b is not sure i f the marriage is "just normal , or wacko" ; Susan continues to compare her marriage to her parents'. M o s t stories have a heroic element, and that is especially true of these stories. A l l four of the non-affected spouses express admiration and respect for their spouse's courage and strength in I l l the face of the cancer. E l l e n , Gerry , Terri , and Susan are heroes to their spouses. T h i s is earned heroism, not romantic heroism. Brad, L i n d a , N e d , and R o b were there through the whole experience; they know, or can imagine, what it took. T h e i r spouses are m u c h more than just survivors. Maturity/Growth/Readi ness Marriages cannot survive the kind of emotional turmoil, isolation, disruption, and role and identity changes associated with cancer if husbands and wives do not have the necessary individual resources. T h e overwhelming number of adjustments and changes these couples went through could not have happened i f each individual spouse had not had a strong sense of self-identity, a solid foundation of self-esteem, and a healthy amount of self-confidence. These qualities gave each husband and wife a level of maturity that allowed them to think and act intelligendy and expediently in both their o w n best interests and those of the marriage. Maturity is evident in these narratives in many manifestations. T h e couples accept the truth of the diagnosis. T h e y are active, not passive, in relation to the cancer. T h e y accept dependency and yet maintain independence. T h e y put aside their o w n needs to help others. T h e y extend their range of behaviours and skills. T h e y attend to the demands of the present without forgetting the past or neglecting the future. T h e y show equality. T h e y strive for harmony. T h e y cherish unity. Cancer tests maturity, but it also bolsters it. These couples feel different f r o m their friends because they A R E different: they are more mature. T h e y have been through an enterprise of great significance and have endured. T h e y have taken on roles for which they had no models. T h e y have behaved honourably and nobly in the face of fear. T h e y have given new meaning to love and commitment O u t of such newfound maturity and growth comes a sense of readiness. B r a d and E l l e n , G e r r y and L i n d a , and N e d and Terri all make this point explicitly: they have survived cancer, they can face anything now. A l t h o u g h R o b and Susan do not yet feel a mutual readiness, they are 112 situated within individual maturity and readiness states that may well provide the nucleus for cooperative growth. Control/Empowerment/Masterv T h e cancer experience is ful l of contradictions. T h e patient feels totally out of control, at the mercy of the disease and under the authority of medical personnel, and at the same time feels in control o f the outcome. T h e patient feels at the mercy of some unseen, mult iplying bunch of cells, and yet is still physically in control. T h e patient can give up control, take control, or find a workable compromise. These couples find the compromise. T h e y allow themselves to feel helpless and confused but centre themselves more within a sense of personal control than within a sense of powerlessness. T h e y invest in a positive outcome for the illness experience itself and for how that experience w i l l impact their relationship. E v e n R o b and Susan, so estranged through the cancer period, remained in control of their individual processes and emerged convinced of their love for each other and their future together. K e e p i n g the locus of control f i rmly within the marriage is a priority for all the couples. Brad and E l l e n firmly resist Ellen's mother's doom-saying; Gerry and L i n d a seize the oportunity to open up as a couple to a f r iend; N e d and Terri plan a very personal celebration of the end of treatment; and R o b and Susan remain together under one roof despite severe tension and hostility. A l t h o u g h the presence and influence of outsiders is a constant factor, coping and adjustment remain a marital responsibility. Maintaining control while accepting that certain things are beyond control makes empowerment and mastery possible. T h e individual spouse becomes subsumed in the cancer experience as a cause or idea that is greater than the self. T h e narrative that emerges f r o m such a shared optimal experience becomes suffused with the meaning of a greater goal. 113 Chapter LX D I S C U S S I O N A s a qualitative inquiry into the meaning of cancer, this study joins a growing body of research which declines to accept the biomedical assumption that illness represents pathology. F o r decades biopsychosocial researchers, wielding diagnostic measures such as the D S M IY and other assessment tests, have continued to orient themselves as observers of morbidity. In 2000, for example, Baider & K a p l a n D e - N o u r , perhaps the preeminent researchers on the impact o f cancer on spouses, called for additional research on such topics as "contagious effect of psychological distress", "dysfunctional coping" , "gender differentiation", and "victimized populations" (Baider & Kaplan D e - N o u r , 2000, p. 49). T h e "distress m o d e l " philosophy described above is deeply entrenched in the literature of psychooncology and psychotherapy. A s Mathieson & Stam (1991) have observed, psychosocial oncology w o u l d be better served by putting less emphasis on diagnosis and classification of psychological disturbance and greater emphasis on understanding the l ived experience of cancer patients. E v e r y counsellor must, of course, be vigilant in assessing depressive symptomatology, as it is well known that depression and anxiety are c o m m o n psychological reactions to cancer (Massie & H o l l a n d , 1989). Clear ly , however, a pathologizing approach w o u l d have failed to capture the actual preoccupations o f the participants in this study, for w h o m distress was only one in a complex web of interwoven meanings. Notwithstanding the above, this study confirms, in whole or in part, many of the research findings reported in the biopsychosocial literature, including 1) that spousal distress has a reciprocal effect; 2) that interpersonal variables in marital relationships are equally as important as individual variables in coping with cancer; 3) that spousal support is a significant factor in adjusting to cancer; and 4) that marital quality and satisfaction can effect psychological adjustment to cancer. Other findings in the study differ f r o m those in many biopsychosocial studies. O n e example is the 114 observation that, at least for this sample of young couples, f a m i l y members were equally as important as spouses in terms of practical support; this and other differences may be anchored in age-related variables that have not been previously considered. In considering the impact of cancer on the y o u n g adult age group, this study is squarely in agreement with those studies that show that age can be a significant factor in the cancer experience. M o s t previous studies, however, have not reported the high levels of concern and distress about changed social relationships and cohort dissonance as was found in this study. Other major stressors associated with age group that have not been noted in previous research but w h i c h emerged clearly in this study were confusion about the importance and/or direction of career, loss of the perception o f unlimited marital possibility, and dissonance regarding the appearance of cancer at an unexpected time and within a health-conscious context. A l t h o u g h the research in this study is organized around a narrative approach, it indirectly confirms many observations found in the adult development literature. In particular, it supports the view that cancer has a tremendous impact on the developmental tasks of the young adult population, especially career and economic independence, emotional growth, capacity for intimacy, and formulation o f identity. It confirms those developmental writers who note that delimiting of future horizons and peer group isolation are a particular threat to young adults with cancer. A n d it supports those developmental theorists who stress the importance of family attitudes, beliefs, and coping styles in the cancer experience outcome. T h i s study does not support those theorists and studies that have conceptualized the cancer experience as a stage-based, linear process. In particular, recovery i n this study is identified not as a neatly defined phase but rather as an ephemeral, ongoing process dependent on the meanings given to the various manifestations of the illness. Since these meanings can change over time, so too can the orientation o f the individual towards his/her perception o f recovery. It is with the existential-phenomenological and narrative literature on the experience of cancer that this study is most in agreement. E v e n a superficial reading of the narratives shows a 115 striving to f ind meaning in the cancer experience and an impulse to frame that experience within story form. W h a t is unique about the findings in this study, however, is the nature of the meaning-making process for the young married participants, a process that had less to do with questions of mortality, spirituality, and ultimate purpose in life than with questions about the impact o f cancer on unrealized marriages, careers, social relationships, and future plans. T h u s , while these stories confirm the power of narrative as a way to elicit universal themes of meaning, they also reflect a very different group of meanings than many other narratives of cancer. Implications for T h e o r y and Practice A m o n g approaches to clinical reasoning, the distress model so often encountered in the literature represents a well-established example o f diagnostic reasoning, in which deficits are identified and hypotheses presented about their cause and nature. T h e types of interwoven meanings revealed in this study, on the other hand, were obtained through interactive reasoning, which, when transferred to the therapeutic setting, w o u l d provide an understanding of the clients' experience of illness, how that experience is affecting their lives, and how the interaction between therapist and client might effect outcomes (Mostert et al, 19%). T h i s approach might be especially effective with young adults, for w h o m social interaction is a major life course preoccupation. T h e existential and phenomenological concerns of people who are experiencing or have recovered f r o m cancer is not a well-developed topic in the psychooncology field. Because caregivers and professionals alike understandably prefer to encourage hope, optimism, and a positive outlook, they are often reluctant to discuss serious questions of meaning. T h i s may be even more pronounced when dealing with younger adults, with the result that "young cancer patients who have little experience with poor health and are confronted with mortality may not receive the help they need f r o m medical or psychosocial oncologists to verbalize and work through their fears" (Roberts et al, 1997). T h e findings presented in this study corroborate that younger adults go through existential 116 questioning when faced with a cancer diagnosis, even if that diagnosis does not indicate mortality. A more significant f inding, however, is that this existential exploration is profoundly influenced by the particular marriage context in which it occurs. T h u s the cancer-affected spouse, while dealing with other marital strains that may arise, is also having to contend with mortality issues that he/she feels are inappropriate in the young adult, newlywed context. Certainly more research needs to be done to determine the special f o r m these mortality issues may take in y o u n g adults and to explore the effects of this contextual dissonance on marital adjustment. In addition, therapists working with young couples need guidance in how to encourage discussion o f this neglected issue in order to normalize and legitimize concerns which are too often dismissed. Moreover , it appears f r o m the data in this study that young married adults go through a unique process of grieving when confronted with cancer. A l t h o u g h for older people this might have more to do with the threat of impending death, for young couples it involves the threatened loss o f cherished dreams, goals, beliefs, and ambitions. W i t h this loss comes a concurrent loss of a particularly valued part o f the shared newly-married consciousness, namely the romantic ideal of endless marital possibility. Counsellors working with this difficult issue are essentially doing grief work, and must understand the unusual permutations of this type of socially embedded loss. It is important to note that such concerns as described above do not take the usual f o r m of existential inquiry. Older individuals with cancer often look back on their lives, searching for answers about causality or seeking purpose in their existence i n order to establish a sense of control. F o r the young adults in this study, questions o f causality were largely immaterial, and did not serve as the main precipitant for self-exploration. A l t h o u g h Wallston et al (1987) have said that causal attribution is a major theoretical basis in the concept o f perceived control, this may not be applicable to all populations. A l t h o u g h this study comprised only four case studies, it clearly was able to produce a significant number of themes that illustrate the many complex meanings given to the cancer experience by young married couples. A s M c G r a t h (1988) has pointed out, it is important for 117 clinicians to assess illness as potentially "a problem of meaning" . T h e schedule of inquiry used in this study can contribute to the small body of clinical literature that offers guidance in eliciting rich interview data on the meanings of cancer, such as Houldin 's (2000) meaning-centred questions, as well as provide additional thematic material for more structured assessments o f meaning such as Fife's (1995) Constructed M e a n i n g Scale. W h e n the personal meanings o f the illness experience are k n o w n to the counsellor, it is possible to better understand the cancer-affected person's responses to the illness ( M c G r a t h , 1988), the effect of the newly-constructed meanings on the previous meanings or life themes that were of central importance in the person's life (Fife, 1994), and how the new meanings might affect the process of adaptation ( M o s s - M o r r i s & Petrie, 1994). T h u s , the counsellor's understanding of the pre- and post-cancer meanings can serve as the foundation for therapeutic intervention, with the counsellor tailoring the assistance given to the expressed and dormant meanings revealed in the counselling dialogue. T h e counsellor working with young married adults must be especially careful to attend to positive meanings that are capable of restoring and buttressing both intrapersonal and interpersonal well-being. T h e above issue is especially relevant with regard to negative meanings, which the counsellor should monitor through ongoing assessment, identification of harmful coping mechanisms, support in the reframing o f meaning, and appropriate referrals (Germino et al, 1995; H o u l d i n , 2000). Considering the relative vulnerability and immaturity of a new marriage, the types of shock, anger, and loss experienced by the participants i n this study, and the potential for long-term damage to the marriage bond, counsellors should be particularly alert for negative meaning construction and associated harmful adaptation. Some of the themes revealed in this study, such as disorientation, isolation, and dissonance, point to schemas that in certain couples could obstruct adaptation. In his theory of logotherapy, Frankl (1984) identified work, love, and self-growth as the three major sources o f meaning in people's lives. It is revealed in this study that Frankl's view is a 118 particularly apt theorization on which to base any phenomenological study of young married adults, for w h o m all three concepts have a central, heightened meaning and for w h o m all three are inextricably connected. It is essential that counsellors working with young married adults understand how deeply the cancer experience can affect these three central sources of life meaning, perhaps more deeply than for any other age group. It is also surmised that the research in this study could provide suggestions to oncology counsellors for therapeutic intervention topics. O n e example f r o m the research might be the revelation that some of the cancer-affected participants resented the expectation f r o m their spouse that they should at some normative point be in "recovery", since for them the meaning of recovery represented not the end of treament and the absence o f symptoms but rather a release f r o m the near-constant, intrusive thoughts of the illness experience. Another example is the feeling on one participant's part that her anger was a beneficial part o f her cancer experience and indeed was the most meaningful source of her strength, while her partner reacted to her anger with distancing and aversion. A r m e d with such knowledge of the private, unexpressed meanings given to concepts such as recovery and anger, counsellors w o u l d be better able to plan interventions that attend to the deeper level of the cancer-affected spouse's interpretive processes and at the same time facilitate communication with the non-affected spouse. F r o m the above we can see that personal meanings, although they may be a valuable part of the individual spouse's experience of cancer, can also be a divisive influence i f misunderstood or withheld. These differences in understanding, at a time when most couples are still establishing effective communication, can, like the cancer itself, change a previously healthy entity into a seriously compromised one. Alienat ion and misunderstanding between newly married couples may be particularly corrosive, as the relationship has not yet had time to cement the marital bond. A s Fife (1994) notes, every family member must face the changed meanings, both individual and shared, that are the result of the illness. A counsellor working with young married couples, therefore, can provide invaluable assistance in opening a dialogue about these changed meanings 119 and helping negotiate their acceptance both within the marital dyad and within the family network. In most cases, young married adults still have an intact family constellation which may be involved in varying degrees of proximity with the cancer experience. E v e n without this proximity, generational patterns o f dealing with illness could have more of a hold on young spouses than on older ones. T h i s study has shown how parents and siblings can be a major source of support but can also cause problems, both between spouse and family and between the spouses themselves. Counsellors wil l need to address the complicated issues of independence and role identity, as they arise within the matrix of family illness narratives, so as to ensure that the young married couple is able to continue their pursuit of separate goals and identities. Cancer has become socially constructed around such values as coping, hope, and recovery, and people with cancer are expected to adopt this ideology (Gregory & Russel l , 1999). T h e findings f r o m this study suggest that this may be especially problematic for y o u n g married adults, for w h o m the disparity between their o w n suffering and the social pressures to be positive and optimistic may be greater than for other social groups. Counsellors must retain an awareness that, regardless of outcome, younger cancer patients may suffer as m u c h or more as other patients, and that a major consequence of suffering may be the erosion of communication and a concurrent distancing o f affections. T h e issue of suffering is worth discussing, i f only because it is so often avoided or spoken of in the guise of "distress", "adjustment difficulties", "pain management", or "psychosocial concerns". It is also an area that was not considered at the outset by the researcher. T h e concept o f suffering is an elusive one; Geertz (1966) suggested that it occurs when a meaningful life pattern threatens to dissolve into chaos. Several observers of illness (Amato , 1990; Cassell , 1982; Gregory & Russell , 1999; K l e i n m a n , 1988) have drawn our attention to suffering, showing how religion and medicine have appropriated the concept as a problem to be treated with doctrinal explanations or palliative medications. M o d e m professional caregivers, seduced by the nil desperandum ethos of medicine, have been trained to treat each locus of suffering separately, which minimizes and 120 sanitizes the suffering and allows the caregiver to maintain a safe distance f r o m the human anguish that suffering represents. A l t h o u g h suffering was not originally a research consideration and did not present itself as a prima facie narrative theme, it is clearly a topic which should be considered. R u n n i n g throughout the narratives in this study, the theme of suffering interlaces the physical , emotional, and psychic pain o f the cancer experience into a single strand o f meaning. Never directly addressed, this type of overarching meaning gives cohesion to many disparate themes. Counsellors working with the young adult population could expect that, as in this study, suffering w i l l be expressed only in oblique and metaphorical ways, testament to sociocultural meanings that stigmatize cancer and suffering in young, otherwise healthy adults with an excellent prognosis. W o r k i n g with young couples, therefore, might entail creating an environment is which suffering can be overtly voiced. A n d it must be remembered that, although many disease-free years of life may fo l low a young adult's cancer experience, the cure of disease does not always eliminate suffering (Cassell , 1982). O n e particularly salient research observation that arose in this study was the degree of isolation and separation experienced by the couples. K l e i n m a n (1988) has shown that the act of labeling someone as a cancer patient is sufficient to "encase the patient in a visible exoskeleton of powerfully peculiar meanings" (p. 22). Other theorists, fo l lowing V a n Gennep's (1960) concept o f the liminaire stage in social anthropology, have used the term liminality to describe the state of alienation and disruption that results when an unwil l ing , unprepared individual is suddenly required to make sense of an illness, come to terms with mortality, and confront the entropy of the future (Frankenburg, 1986; Little et al, 1998; M u r p h y et al, 1988). Based on the findings in this study, it is postulated that this theory has special aptness for young married adults. T h e sense of alienation, disruption, apartness, and existential turmoil experienced by this type of individual has special power within the contexts of a vibrant romantic partnership, a thriving social network, and a life untouched by intimations of mortality. F o r this group the experience of liminality can be expected to be more unsettling, with the danger that a 121 failure to adequately process its meanings wil l lead to a phase of sustained liminality. F o r counsellors, liminality provides a category of understanding which captures the " b i g picture" of the young cancer patient's worldview. If illness is viewed as a "state of disharmony. . .which incorporates a loss of the familiar w o r l d " (Toombs, 1992, p. 96), then it can be said to cause a sense of spatial and temporal disruption. W h i l e spatial disruption was evident i n this study, it seems that y o u n g married adults are more affected by temporal disruption, that state of being that results f r o m an unexpected shift in the life course. Couples may find themselves so caught up in the demands of the here-and-now that they cannot move freely between the actual order and the possible order in order to project themselves into the future moment to "possibilize" (Zaner, 1981). A s Cassell (1982) notes, the meaning of the illness time scale is subjective and varies with every patient. Counsellors, therefore, in a iming to restore the identity of the young adult marriage as a temporally l ived entity, must be particularly attentive to determining how cancer has impacted the couples' sense of future possibilities. T h e findings f r o m this research study may also contribute to disciplines such as health psychology and medical sociology. B y helping to illuminate individual and spousal conditions and issues and the constructs and meanings underlying them, this research can add to the data set of case studies on the restoration o f psychological health and the social construction of illness dialogues. These narrative case studies could also be used to guide practice in the oncology setting. M a n y of the participants in this study expressed considerable dissatisfaction with their treatment by representatives o f the medical profession. It is hoped that even such a small number of subject cases as these might serve to alert oncology professionals to possible shortcomings in their treatment protocols. A s K l e i n m a n (1988) states, clinicians need to be able to hear the "complex inner language of hurt, desperation, and the moral pain (and also triumph) of l iv ing an illness" (pp. 28-29). 122 It must be noted that the above discussion of implications for theory and practice addresses only those issues pertinent to the relevant therapeutic population, namely young married adults. A s was evident in the narrative analysis, many of the issues that arose in the interviews had a broader application, indicating that the narrative themes revealed here may be highly relevant to other populations. In conclusion, this study makes a contribution, no matter how small , to the growing belief in the oncology f ield that clinical practitioners can provide an authentic presence by being an empathic listener to cancer stories. Getting to know cancer involves hearing both the suffering and the life affirmation and listening to the meanings inherent in each. In essence, cancer challenges us to understand the human condition as it is found simultaneously in vulnerable, diseased bodies and invulnerable, resilient spirits. Limitations of the Study In any discussion o f the limitations o f empirical inquiry, it must first be recognized that the endeavour is inevitably subject to the researcher's o w n limitations. A l t h o u g h I have attempted to minimize this through participant validation and external review, it is always true that as researchers we interpret participant data through our o w n personal, cultural, and social filters. In addition, the researcher's interview presence, choice of questions, and analysis o f selected narrative themes help to create what K l e i n m a n (1986) calls the "clinical reality" of interpretation. A n y methodological standpoint is, by definition, "partial, incomplete, and historically contingent" (Riessman, 1993, p. 70). L i k e every method, the narrative model is subject to limitations which, while they do not detract f r o m the valuable information produced in story f o r m , can affect the strength and comparability of the research findings. A s narrative researchers we can never escape f r o m representation or f r o m reduction, and every method exacts some price in the f o r m of truth no matter how meticulous the researcher's process. A s M i t c h e l l (1990) has said, there is an inevitable gap between intention and realization, between original and copy. It has been observed that "secrets inhabit narrative as a matter of course" (Charon, 1993). T h r o u g h the act of interpretation, the researcher tries to divine the secrets of the narrative text, but in the end this must inevitably be an exercise not of truth but of conjecture; in Lacan's words, "truth always manifests itself in a structure of f ic t ion" (in D a v i s , 1983). T h u s the narratives produced in this study are merely a textual approximation of a transient reality and not, as some narrative analysts make the mistake of assuming, "untrammeled access to a realm of hyperauthenticity" (Atkinson, 1997, p. 10). A s Kermode says, " W e glimpse the secrecy through the meshes of a text; this is divination, but what is divined is what is visible f r o m our angle. It is a momentary radiance" (Kermode, 1979, p. 144). A l t h o u g h the temporal and contextual ordering given to a narrative by its creator is in itself a significant way of conferring meaning (Ricoeur, 1981), the researcher, constrained as he/she is by the imperatives of the text, cannot hope to capture the intrinsically ephemeral nature o f storytelling. Because the semi-structured interview embraces such a high degree of participant freedom and creativity, the story as told is very m u c h located in the moment, with an infinite variety of temporal , shifts, somatic adjustments, ambiguities, contradictions, forgetfulnesses, attitudes, tones, gestures, and so on that are encapsulations o f meaning in their o w n right. A n d because illnesses like cancer can provoke such a wide range of responses, cancer stories are replete with multiple contradictory voices. Derr ida has said that our task as analysts is to deconstruct such oppositions in order to "recapture the unity of gesture and speech, of body and language, of tool and thought" (Derrida, 1974, p. 85). A l t h o u g h the narrative method may be one of the most effective in achieving such deconstruction, it is nevertheless limited in its ability to capture the multifacetedness of the storytelling experience. A s we have seen, the four narrative accounts produced by this study have revealed many c o m m o n themes o f meaning; it cannot be inferred, however, that such themes are c o m m o n to all young newly married couples who experience cancer. T h e credibility of the research w o u l d be enhanced by further exploration of the research topic, so as to provide greater illumination of a 124 relatively unknown research phenomenon. O n e of the paradoxes of the narrative turn is its c la im to provide a systematic way of exploring research data in a way that simultaneously attends to the uniqueness of personal detail and the universality of c o m m o n themes. It w o u l d seem axiomatic that this "best o f both worlds" expectation must in some measure f a i l ; however, in looking back over the analytic process and results, it seems to the researcher that the goal w o u l d have been more fully attained if more experiential detail had been included. A n interesting limitation of narrative research which is particularly applicable to illness studies is the question of embodiment. Frank (1995), K l e i n m a n (1988), and Radley (1997) are some of the writers who have emphasized the need to understand the illness narrative as an expression of bodily experience; as T o o m b s (1992) notes, "illness manifests essentially as a disruption of l ived b o d y " (p. 62). Narratives such as those in this study, however, can fail to embrace this understanding. Interview questions that addressed the meaning o f the cancer experience as an embodied process might have contributed more depth to the results. T h e application of the findings in this study to other patient populations is also limited by diagnostic heterogeneity, in that three out of the marriages studied involved the wife as affected person, and those three all involved a female-specific type of cancer. T h e study's findings could have been strengthened if the recruitment process had produced a greater number o f husband-affected couples and a wider range of cancer types. In counterpoint to the above, it could be argued that any research findings f r o m a sample of mixed-diagnosis participants are invalid. C a n a couple dealing with breast cancer really be compared to a couple dealing with skin cancer? Some of the inconsistencies in narrative theme in this study might be attributed to the admixture of cancer types. Another weakness of the " m i x e d " cancer study is that it does not allow for the collection of information on the relationship between the specific diagnosis and the psychological effects of that diagnosis. If the illness variable had been coincident, the diagnosis itself could have been 125 investigated as a possible causal factor in the participants' reactive stances to their cancer experience. It must also be observed that the participants in this study, though all had been diagnosed with cancer within the first three years of their marriage, were not interviewed at the same point in time relative to their cancer experience proper (i.e. diagnosis and treatment). T h u s , since various amounts of time had elapsed since that experience, the couples studied were in different stages of their transition through the experience. It can be expected that such a variance in elapsed time might affect such factors as degree and accuracy of recall, tone and content of presentation, and configuration o f meaning. T h i s study is also limited by the absence of cultural diversity. A l l of the participants were Caucasian, heterosexual, and upper middle class, resulting in a high degree of demographic heterogeneity. T h e experience of cancer is undoubtedly affected by cultural perspectives, but it was not possible to explore this issue in the study. Final ly , it must be observed that such point-in-time studies as this cannot hope to capture the full range of meanings that wil l ultimately be ascribed to the cancer experience by the couples in this study. T h e construction of meaning is a dynamic process, especially when it involves such an uncertain phenomenon such as cancer, with its inevitable threat o f recurrence. T h e meanings discussed in this study, therefore, are merely fleeting imprints in a meaning-making journey that started before this inquiry and w i l l continue l o n g after it. T h e Researcher's Experience A s I have worked with many people struggling with the cancer experience, I have a certain amount of experience with the concerns that arise. In fact, I was working directly with such people, in both the practicum setting and through volunteer work, as I prepared this study. T h e participants in this study, however, shared some of the most poignant stories I have ever heard. In being aware o f m y o w n process, it was important for me to realize that m y sense o f this poignancy was informed not just by the content and presentation of the stories but by m y o w n life 126 experiences. Three of m y closest friends have had their young adult lives transformed by cancer, and two of those succumbed to the disease in m y presence. T h i s k i n d of personal connection to one's subject matter can, of course, present problems, but it can also make true connection and understanding possible and thereby enable a more accurate representation of the research data. It is m y belief that compassion is the single most important therapeutic characteristic of the cancer caregiver, and that without compassion a cl inician has no basis of understanding or empathy. It also seems necessary to have a deep sense of humility, in order to appreciate that we can lend our strength, knowledge, and support to others but in the end they must rely on their o w n resources to get where they need to go. In m y research process I was gratified with how well the narrative orientation supported the goals of compassion and humility. 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I a m seeking participants who have experienced cancer i n their marriage through the diagnosis and treatment o f one spouse, and w h o are n o w i n a post-diagnosis phase. A t the time o f the diagnosis, the participants w i l l each have been 35 years o f age or less and have been married for no more than 3 years. Interviews w i l l be taped o n audiotape. T o ensure confidentiality tapes w i l l be given a number code, w i l l be kept i n a locked r o o m , and w i l l be erased u p o n completion o f the study. N a m e s w i l l be changed i n all written accounts o f the study and i n the final thesis. Participation is entirely voluntary and participants m a y withdraw at any time. It is hoped that b y participating i n this study, participants w i l l contribute to helping others w h o m a y face similar experiences. F O R F U R T H E R I N F O R M A T I O N P L E A S E C O N T A C T : M a r i l y n Barz (phone number) 151 APPENDIX B: PARTICIPANT CONSENT FORM T I T L E O F T H E S I S : T h e M e a n i n g o f Cancer i n a N e w Marriage R E S E A R C H E R : M a r i l y n Barz , B A , L L B , Masters candidate ( U B C ) F A C U L T Y A D V I S O R : D r . Larry Cochrane T h i s study is being conducted to gather research data for the researcher's graduate thesis i n Counsel l ing Psychology at the Universi ty o f Bri t ish C o l u m b i a . T h e purpose o f the study is to understand the impact and meaning that the experience o f cancer has for a new marriage. Participants are volunteers w h o agree to attend 2 private interviews with the researcher. In the first interview, the couple 's story o f what cancer meant and continues to mean within the context o f their marriage w i l l be sought. In the second interview, the researcher w i l l present the couple with a written summary o f their story to ensure that it is accurate. T h e 2 interviews w i l l last 1.5 to 3 hours each, and w i l l be conducted i n a mutually agreed-upon location. T h e interviews w i l l be taped o n audiotape. A l l contents o f the tapes and identities o f the participants w i l l remain strictly confidential: tapes and research notes w i l l be kept i n a locked r o o m , codes w i l l be used in place o f names, and computer files w i l l be accessible through a password k n o w n only to the researcher. T h e researcher w i l l be available before, during, and after the interviews to answer any participant questions and to ensure that all procedures are fully understood. A l l tapes w i l l be erased and research notes destroyed u p o n completion o f the study. In the thesis, names w i l l be changed to protect the participants' privacy. A n y participant m a y refuse to participate or withdraw f rom the study at any time without jeopardy. Participants w i l l not receive any monetary compensation. A n y participant w h o has any concerns about his/her rights or treatment as a research participant m a y contact D r . Richard Spratley, Director o f the U B C O f f i c e o f Research Services and Administration, at 822-8598. I C O N S E N T to participate in this study and acknowledge receiving a c o p y o f this consent form. N a m e Date APPENDIX C: INTERVIEW PROTOCOL T h e fo l lowing questions were used i n the first research interview: 1. C o u l d y o u tell m e about your experience o f the cancer diagnosis? 2. H o w d i d y o u as a couple experience the period o f treatment? 3. What were some o f your feelings and thoughts about the cancer itself? 4. What kinds o f things helped y o u get through the difficult times? 5. What was it l ike for y o u to experience this so early i n your marriage? 6. C a n I ask y o u a bit about some o f the changes y o u experienced? 7. What is different or unique about your relationship now? 8. H o w has this experience affected your views o f the future? 9. H o w has this experience affected the w a y y o u relate to each other? 10. What has the experience o f cancer meant to y o u as a couple? 11. W h y do y o u think cancer happened to you? 153 APPENDIX D: SAMPLE TRANSCRIPT T h i s transcript is one of four prepared for this study. T h e letter R is used to refer to the researcher. T h e names of all people referred to, as well as a few identifying details, have been changed to protect anonymity and confidentiality. F I R S T I N T E R V I E W R: I'd like to go over the purpose for this interview and what y o u can expect during its course. A s y o u know, I'm researching the meaning of cancer for young married couples. T o accomplish this I'd like to ask y o u a series o f questions that I hope w i l l encourage y o u to tell me the story of what this experience has meant to y o u and your marriage. A r e y o u both comfortable with that? B r a d : Guess so, sure. E l l e n : Sure. R : Great. I think what w o u l d work best would be to ask y o u to talk a bit about how y o u met, when y o u got married, any important events in your early marriage, and then talk about the cancer diagnosis. W o u l d that be O K ? Brad : Yeah. E l l e n : (nods) R : O K , great. First then, how. . .how did y o u meet, and when did y o u get married? E l l e n : W e l l . . . y o u won't believe this but...we met through a personals ad. R : O h , yeah. Brad: It was M Y ad. R : U h - h u h . . . Brad : Yeah, I though, ' W h y not, what've I got to lose?'...so I caller her up...I think she was, uh, third on the list or something...can't remember.. .but there were some c o m m o n interests so I thought, O K . . . i t was just a casual thing. . . E l len : Yeah, just casual, hiking stuff, dinner., jus t casual...he was busy at work, travelling quite a b i t . . R : U h - h u h . . . Brad : B u t eventually...I guess we met in '91... E l l e n : Yeah.. . Brad : ...but eventually, we started spending more time together, o f f and on...I l iked the way she l iked science stuff...motors, bikes, stuff like that...I'm a mechanic, so... R : O h , yeah? B r a d : ...yeah...so we'd work on m y bike sometime, she'd get all micked, mucked up. . .k ind of different, I thought. .I 'd bug her, bug her a lot (laughs)...'hey, baby, what's happened to your make-up?' (laughs)... E l l e n : Y e a h , he'd bug me that I was a 'biker chick'.. .I wanted to k i l l h i m sometimes...it was like, lots o f women do stuff like this, what's the big deal?... Brad (laughs): Y e a h , she called me T h e Slammer' cause I was always. . .buggin' her. . .slammin' her and her family , y o u know? E l l e n : (laughs) Y o u just hung around men all the time, that's al l . . . Brad : W e l l , y o u kinda l iked that when we f ixed your truck! El len : Yeah. . . R : S o y o u started seeing more o f each other... E l l e n : Y e a h , and eventually I moved in.. .we l ived pretty close to each other, in T o w n A and T o w n B. . .he had this big o l d house, like an o l d prairie house...it was pretty weird (shrugs)... Brad : You're makin ' it sound like we just met each other and b a m ! b o o m ! we were l i v i n ' 154 together...don't forget we kinda broke up a few times...couldn't stand each other for too l o n g ! E l l e n : It was a bit rocky, yeah.. . R: S o y o u l ived together, then decided to get married...? E l l e n : Yeah. . .we were in M a z a d a n and...he proposed, l ike out of the b l u c . i t was nothing planned...I thought 'What? What is going on here?'...it was so...unexpected...crazy guy! B r a d : K i n d o f the margarita thing, I think (laughs).. .could never figure out that tequila effect thing.. . E l l e n : (laughs).. .you always blame it on the t e q u i l a -Brad : (laughs).-.I blame E V E R Y T H I N G on tequila!. . . R: T h e n y o u were married...? Brad : Y e a h , in '95, b ig bash, '50s m u s i c . n o t your usual w e d d i n g -E l l e n : N o t your usual wedding is right. . .my parents couldn't believe it... Brad : It was cool. . .we had m y friends playin ' l ive music on the deck. . .Ellen's m o m and her cronies d i d all the cooking.. .the best Ukrainian f o o d y o u ever had in your l ife ! . . .we rented one of them big lawn pools (laughs)...everyone got dunked at some time or other...and there was a real neat bar, an o l d car, friend's a paint shop guy, brought over his o l d Pontiac and made a bar out of i t . .couldn't believe a wedding could be so m u c h fun.. .course it was pretty cas[ual]...pretty cas[ual]... E l l e n : W e kinda l iked that...no big church thing or ceremony...I didn't want some ridiculous 'do y o u obey, do y o u cherish' thing...not m y s t y l c . n o way.. .don't see w h y people always cry at weddings, maybe because it's so ridiculous, all that pomp and circumstance.. .you should be laughing instead o f c rying! . . . R : It sounds fantastic.. .you obviously had a wonderful time...what was your early marriage like? Brad : R o u g h ! (laughs)...she started puttin' the screws on. . . (El len hits h i m playfully) . . .no, no, it was O K . . . q u i t e a bit of, uh , back-and-forth, conflict . .we're both, uh, strong people, opinionated, stubborn, little bit crazy.. .so lots o f arguing, yell ing, in each other's face all the time...couldn't figure out what the hell she wanted most of the time!. . .still can't (laughs)... E l l e n : It wasn't so bad.. .he'd been used to l iv ing alone.. .such a slob.. .and he had a lot o f animals, pets, a lotta work around them besides his day-to-day job.. .I don't know, it seemed like there wasn't m u c h time...there was always so m u c h to get done, take care o f around the place... Brad : Y e a h , well , y o u had all Y O U R stuff, too. . .work and your family. . .a l l that art stuff, with the painting and kiln and...it was.. . like two giant...operations c o m i n g together... E l l e n : yeah so there didn't seem like enough time ever...what's it like for people with kids, G o d . . . s o we used to get on each other's nerves, probably because we we trying to do so m u c h all the t i m c . b u t that's good, too, cause w c . i t was always interesting that we had so m u c h going on , not the same stuff, different stuff, and some of the same stuff, too.. .and that was O K , that was good...lots o f couples don't do that... R : Sounds like y o u were very busy . . .um, how w o u l d y o u describe your relationship in those early years? F r o m a. . .communication standpoint, a...togetherness perspective...? Brad : W e didn't have time!. . .no.. .it was good. . .we'd fight, but there was lots of . . . interest . . chal lengc .f i reworks! . . .El len was not anything like other women I'd known...(chuckles). . .I sure as hell knew T H A T . . . y e a h . . . w o w , I found T H A T out!.. .she was tough...wouldn't give an inch...those Ukrainians! . . .her sister Laura was even worse, always on m y case...couldn't do nothin' right...but so O K , I said to myself , I have to make some adjustments I guess, like fine tuning a motor, getting it better and better...my first wife was such a sweet little creature compared to Ellen.. .after awhile, they say, y o u know what y o u want, but...I don't know, I got more than I bargained for. . . E l l e n : That's true both w a y s L . v e r y true both ways. . .anyway, like he says, I'm not the typical little wifey t y p c . a f t e r all , we both had our o w n lives before... we just had to l u m p them both together and then try to make them fit...try to make the families fit together, get used to being a married couple, which is different than l iv ing together... R : H o w so? Ellen: . . .um.. . i t 's the heavy slogging...the l iv ing together is, like, fun, sil ly, not serious.. . ! mean, we 155 were serious, but it was different... um...I guess it just seemed suddenly that we weren't just two big kids having this good time.. .taking off for a trip, just getting away. . .now we had to consider our families, and the f u t u r c . m o n e y and stuff...talk about stuff seriously.. .but I don't think we wanted to give up the old way of doing things, l iv ing together like a new couple.. . Brad : I sure d i d n ' t . J was thinking 'What the hell d i d I get myself into?' . . .goddamn tequila (laughs)...I probably made it harder, I was buggin' her all the time...she'd get her back up right away.. .it was so funny.. .sometimes I was just buggin' her, didn't mean anything by it, but she'd get her back up and wham!.. .there we were goin' at it tooth and n a i l -E l l e n : Y e a h , don't y o u remember that big fight about the house? Brad : What about the house? E l l e n : Where y o u said I could choose between paying rent or starting to pay into the equity? Brad: Yeah. . .was that a big fight? E l l e n : Yeah! . . .oh , that went on for days...weeks...it was major... Brad : W e l l , y o u were so damned scared of being in one place for any length of time...still are!... E l l e n : N o , I just wanted to work out a fair thing...not be in a position that wasn't r ight . . for y o u O R me... Brad : W e l l , it was all pretty stupid. . .you were not thinkin' clearly...but, yeah, I guess it was a major d e a L . a n d then the family thing...her family was not particularly thrilled with me, who knows why, or should I say let me count the ways! . . . E l l e n : Well . . . i t was m y first marriage, and B r a d had been married before...that didn't sit wel l . . .my family's very traditional, very old-fashioned.. .kinda old world.. .they were a bit funny about that...plus Brad's very outspoken, doesn't think before he speaks...some things were said that were.. .maybe too soon to be said, I don't know.. .things that w o u l d have been better left unsaid...I don't blame Brad , he was just being himself, but m y family's more.. .formal.. .inhibited.. .I thought that was obvious and B r a d should've k n o w n that... Brad : A h , they're just a bunch of t i g h t a s s e s L . Y o u know it's t r u e -E l l e n : (silently rolls her eyes and sighs) R: T e l l me, how. . .how were y o u able to work through all that stuff? E l l e n : W e haven't! (smiles).. .no, not really...I guess when they found out how helpful B r a d was...he was always doing something for them.. .building that shed...and that time the car had that oil leak.. .remember y o u fixed that for m y dad.. .yeah.. .well , they got a bit warmer towards h i m then...I didn't really care anyway what they thought, I married h i m not them... R : Right.. .let me ask you..what do y o u think was the, the biggest challenge y o u faced in your early married years, as a couple I mean? E l l e n : It was probably the kids thing.. . Brad : Can't argue with y o u there... E l l e n : W e had to...Brad's always wanted kids, and I've never wanted any...I don't know, it...I've just never seen it...just never had the urge.. .of course m y m o m and dad have always wanted grandkids...see, there's three of us girls and m y one sister is not married and the other.. .well. . .we won't be seeing any grandkids there...in other words, there's no kids in sight f r o m any o f us...so they...they're probably thinking, O K , when are B r a d and E l l e n going to start having kids?. . .probably started thinking that at the wedding!. . .little d id they know, we were having these E N D L E S S arguments about it, nearly breaking up over it... Brad : Yeah.. .I 've always wanted kids...guess that's why I have so many animals. . .my brother and sister have kids so at least I'm an uncle...but, y o u know, it's so weird, m y first wife said she wanted kids when I married her and then everything changed...I don't know what happened there...it was, it was r o u g h . . ! guess E l l e n and I discussed it before we were married, didn't we?... E l l e n : . . .yeah, we d i d , we did . . . Brad : ...but nothing was decided, I remember she was kinda lukewarm about it but not completely against i t -E l l e n : I can't remember a day when I've ever been lukewarm about it, but there y o u go, wishful 156 thinking on his part... Brad: I don't think so (sighs deeply)...but then we got married and I'm thinkin', OK, we'll talk about this, most women have that biological clock thing goin'...I thought, let's do some serious talking about this, so when we finally did, and then I find out she's dead against it...I thought, geez, what is going on, what's this all about?...so we hashed it over, probably over a month or two, really goin' at it...basically it's a no go, dead in the water deal...and I'm feelin' 'you bitch!, you led me on'...that's how it looked to me... Ellen: So not truc.as I say, wishful thinking, big time... Brad: Yeah right...anyway, when it comes right down to it you can't do anything about it, you can't justify making a woman being a mother...well, you can't do that anyway...I mean, I went through it with my first wife and struck out so I'm used to it (laughs)...it's like, why do I always get involved with these women? Ellen: I said to him, you're gonna have to live with it, and I think when he finally realized that was the way it was gonna be, he was mad all over again...I mean, first he was mad at me cause I didn't want kids, and then he was mad at me...mad at the world...once he told me This is a dealbreaker!', like if I didn't want kids he didn't want to stay married...like the marriage was some sort of 'deal'...gee...it was a rough time...it felt like we were in crisis mode for months...fighting, fighting, fighting...not even sleeping in the same room sometimes...can you imagine, this is real soon after our wedding...well, not long after anyway... R: So...what finally allowed you to come together and...um...stay together as a couple, after everything that had happened? Ellen: Well, I think one night Brad had this long talk with his brother...remember?...you came home and you had flowers and I was glazing that penguin and you said you were sorry, could we just go out to dinner...like we used to, and... Brad: I don't know, I can't remember what my brother said...maybe it was my sister, she can usually bully me into things... Ellen: No...it was your brother...you said he took a stripe off of you...so, yeah...we went out, I was so tired of all the fighting and being apart and feeling like, wow, how can this be happening, breaking up already, we've hardly been together yet...so we went to Restaurant A, it was different somehow...it was like we were all deflated, all...tired, I guess... Brad: Yeah, but it was better than fighting... Ellen: Yeah...so we talked, and it wasn't easy, I thought he was such a jerk for pressuring me and ignoring my wishes...I never said I wanted to have kids...I never 'led him on'...but we'd taken so much out of...the marriage...by all the fighting...in fact I thought 'Can we ever ever get back to where we were before?'...but..well...I guess eventually we did...no, first we had a truce, like a moratorium on fighting!...then I had to get over resenting him so much for all the pressuring me...that wasn't easy...and he thought I'd misled him which was just not true...so not true...but...finally we realized, I guess, that we were going to go on regardless... Brad: Yeah...I think that's when we took that camping trip to Mountain A...it was like we'd been through a war or something, and, and we were the survivors, the veterans of the big one...almost like, OK, we've come out of this, we're both still standing, we're both tough as nails, now where do we go from here... Ellen: We got it all out of our system, I guess, cause we didn't fight at all that whole trip...in fact it was kinda like a honeymoon, second honey moon... sounds kinda goofy...I felt good that I hadn't given in, think maybe Brad knew from then on that he wasn't going to have any...power over me, couldn't push me around, he's a big guy and he likes to have his way, likes to be the tough guy, the guy in charge...I guess maybe that worked sometime with other women, but it wasn't gonna work with me... R: Mmm...can I ask you, sort of in light of what you've been talking about...um, how do you each view marriage during this time, what to you was the meaning of your marriage, the reason for being married... what did it mean to you? 157 E l l e n : (long pause) I guess it's an expression of love. . .a commitment. . .a bond that says to the wor ld that you're serious about the relationship, y o u want it to be a lasting, forever kind o f thing...but also a partnership, like in business where y o u each keep your.. .independence.. .where y o u don't have to change for the other person... R : M m - h m m . . . B r a d ? B r a d : (sighs)...It's been different things at different times... R : Such as...? Brad : W e l l . . . w a y back when, I got married and it was probably for sex (laughs).. .well, that's probably not fair.. .but still, I wanted sex and kids, I know that...didn't think about much else... R : A n d now? Brad : N o w it's more about personality.. .do I l ike this person...can I have fun with this person...is this person kind of in m y corner...is this gonna be an adventure, is this gonna be a challenge...but not so m u c h of a challenge that it's not fun. . . R : Right.. .(reflective pause)...I want to thank y o u for sharing those memories and thoughts with me...it gives me a wonderful picture of the two of you. . .of your marriage and how it was before the cancer came into your life...perhaps we can turn our attention now to the next phase, the cancer experience...I'd...can I ask y o u to tell me a little bit about the experience o f the cancer diagnosis. . .how y o u came to receive the diagnosis, what impact it had on y o u as a couple. . . E l l e n : I found the l u m p in m y breast in the shower...it was in M a r c h , just after m y birthday...it was like all of a sudden I was ice co ld , in the middle of the hot shower...I just stood there, just frozen...I told m y sister the next day, we were at the tile store, she was getting new bathroom tiles, I told her in the car afterward...she said 'What did the doctor say?', I said I hadn't been yet...I guess I went the next week...it's true, your whole world changes, turns upside down.. .I knew it was cancer, I somehow knew it was...(sighs)...I was not impressed by the doctor. . .oh, he seemed to know what he was doing but he h u m m e d and hawed and just...just tell me, stop beating around the bush! . . .and then I was out o f there, no chance to ask any questions or ask about books and stuff...I don't know how I got through that week, I don't remember m u c h of it, just not sleeping, not eating, only m y sister knew, it was horrible, horrible...not knowing is just torture...I told B r a d I was worried about work, we were m o v i n g m y department so it was a good excuse...I drank a lot, even during the day.. .sometimes I'd get up in the middle of the night and have a drink. . .we have this one dog, and he knew, I can't explain it but he was always nuzzl ing me, sticking by m y side, sticking his nose into m y lap. . . if I cried he'd come over and sit looking at me with these big goofy eyes.. .so.. .anyway...I had the test, it was positive, it was a fairly large tumor but not too terribly aggressive so I was lucky that way. . .and also it hadn't spread...I remember m y sister and I celebrated the 'good news'.. .ha ha.. .with a big sushi lunch, lots o f sake, more sake than shusi...I mean sushi.. .yeah...what a shock, and yet. . .could have been worse... R : What a.. .difficult time that must have been.. .yeah.. .Brad, can y o u tell me.. .um.. .about how E l l e n shared the diagnosis with y o u , how y o u felt about the diagnosis? Brad : (sighs deeply)...I'd come home f r o m work and E l l e n was there.. .normally she gets home later so I thought maybe she left early or was sick or something...I was just bowled over when she told me...I remember I was mad that she hadn't told me about what was happening earlier...I guess I was mad, I don't know at what...I asked her what they were gonna do, she started crying, she...she couldn't talk...I think she couldn't bring herself to say 'mastectomy'...she never actually said the word. . .well , we talked a bit about what w o u l d happen next, it was all set up.. . E l l e n : It was going to happen soon, yes.. .Brad's right, there was something about the word 'mastectomy' that was too final to say...it was very hard telling Brad.. .I wasn't sure what he w o u l d do...I just blurted it out, I think...I didn't know what the whole thing w o u l d mean for us, the marriage...I was in the middle o f a big shift at work, it was a major deal but obviously I'd need time off now.. . Brad : I told her not to worry about the work thing, she had to concentrate on the other stuff now. . .who cares about the work thing.. . 158 E l l e n : Y e a h , but that's easier said than done. . .my j o b is really important to me...lots of responsibility.. .it was such bad timing. . . R : M m - h m m . . . I ' m wondering.. .what are some o f the...other thoughts that went through your minds? A b o u t the cancer itself, what that meant? Brad : It was tough...I tried not to think about anything negative, but o f course y o u can't help it...I didn't know anything about breast cancer, it was all a big mystery...I knew what a mastectomy was, and I asked why it had to be so d r a s t i c . E l l e n explained about her cancer, explained about the surgery and the rest of it, the radiation, yipes I thought, what's that gonna do to y o u physically, what's gonna happen, she explained a bit about it, I couldn't really grasp it, I had no idea what to expect, in a way I felt like running away...it was just so unexpected, such a shock...just so out o f m y league, I mean m y m o m and dad had had health problems but not cancer, I couldn't believe it, E l l e n was so active, ate really well , healthy family. . .couldn't believe it...I remember we drank a lot of wine, had some M c D o n a l d s ' s . . . E l l e n : Yeah. . .what a night . .no , we ordered a pizza.. .but you're right about the wine. . .we talked about how we had to tell the families and how it was going to be so hard on m y mom.. .we're kind of tough, hardy stock, hardly ever sick, m y grandparents l ived into their 90s...I remember when we were ly ing in bed, how I wondered why B r a d just went to sleep... B r a d : D i d I? E l l e n : Yeah. . .I remember thinking that it w o u l d be nice to. . .well , I don't know what I expected, really...but I just lay there, sort o f immobile , I guess maybe immobi l ized by fear, wondering what w o u l d happen...with me, with us... R : Yes . . . i t was hard to take in. . .such a shock all at once. . .and then I guess y o u started your treatment...can y o u tell me how the two of y o u as a couple experienced that period, the period o f treatment? E l l e n : I had to take time off work.. .I 'd told m y family , and we all cried.. .and we don't cry easy! . . .Brad was having a hard time dealing with everything...I could tell...it was hard. . .my sisters were great, helped me get through the surgery and the radiation...the worst part of it was the radiation, it was so awful . . .Brad was trying to be supportive, he'd make me special drinks and give me massages, foot massages, rub m y temples...but we didn't really talk through that time...I felt like I wanted m y sisters around me, somehow, but that men wouldn't understand...my m o m was a bit hysterical at first, I wished she'd just go home.. .couldn't deal with it...I think B r a d and her had a few run-ins...I couldn't stand the littlest things, everything just made me c r a z y -Brad : H e r mother was a pain in the ass...she'd come over and wring her hands and look all d o w n in the mouth, l ike it was a death watch or something...I shut her up a few times...told her to go home.. .it was a scene.. .anyway, I was super busy, all the animals and m y j o b and doing stuff around the h o u s e . . ! was frustrated because it all seemed so out o f m y hands...angry at people w h o I had no reason to be m a d a t . . E l l e n was great, so ca lm and collected, got through it all like a trooper... E l l e n : I don't think y o u allow yourself to be O T H E R than ca lm and collected.. .you just can't fall apart...well, I mean I cried a lot after the diagnosis, but not actually during the actual treatment...I was on coping alert...maybe the body knows y o u need energy to take the treatment so y o u don't cry...(sighs deeply, becomes slightly tearful)...but then.. .you have to face it, later...the after the surgery part. . .whew!.. .(long pause)...I can't talk about it even now.. . R : Please don't feel y o u have to talk about it . .it 's O K , Ellen.. .let's move on to. . .Brad, what d id Ellen's surgery mean to you . . .d id it change...things... anything for you? Brad : Well . . . i t was shocking.. .I mean, the physical after-effect is shocking.. .we've talked about it since then so I know it's O K to talk about i t . .but I really didn't know what to say...what w o u l d be the right thing?...I kept trying to think 'What i f I had something just cut off me?'. . . 'how does a person deal with that?'...I couldn't fathom it...I know I felt so horrible about it and horrible about what it must be like for her...but I also knew I couldn't possibly understand...I'm glad she had her sisters...(long pause).. .well, sure I wish it hadn't happened, and no one likes to have to deal with it, that's a given.. .but it had to be dealt with, and I thought 'If this is hard for me what's it l ike for 159 Ellen?'. . . R : Y e s . . . m m - h m m . . . E l l e n : T h e thing about it is...the thing about B r a d is, he's pretty honest about things, sometimes way too honest, shoots f r o m the hip like John W a y n e , y o u know?. . .he didn't try to make it better than it was, sweeten things up for me...he was honest about how horrible he thought it was. . . in the end I think that I appreciated his honesty, but it was hard to take, like always with him...it 's hard to take at first, but it's the way he is and in a way...it's better than trying to deny things... B r a d : W e l l , we've always been honest with each other...we'd always shout and scream and say what we thought... may be not so m u c h at the time, the time during the treatment...but we were honest about things generally...I told E l l e n how I thought it was., jus t horrible, no use denying i t -E l l e n : I had m y family trying to cheer me up, that was the one side of things. . . 'Oh, it's terrible but now it's over and you're going to be O K and everything w i l l go on just like before and it's not like it's the end o f the world'. . . (combination o f sigh and chuckle).. .I needed that . .Laura and Teresa were great, they kept it so together...but Brad, he was like the contrast to that. .he got mad and got angry, let it all hang out...that was good, too, that attitude balanced off the other stuff...I needed both, I guess... R : M m - h m m (pause).. .Thank y o u both for sharing that with me...I know it's hard...I'm wondering i f we can spend just a little time now talking about the cancer itself...what were your thoughts about it, how did y o u visualize it. . .imagine the cancer in your m i n d , the cancer as a thing? E l l e n : W e l l , it used to mean something that somebody else got..it 's funny, when it's y o u it's so different. .everywhere I looked, every magazine had an article about cancer, every T V show was talking about cancer...I wondered why everyone knew so m u c h and I wasn't doing that for myself. . .I probably blamed Brad , wasn't he supposed to be doing that?...anyway, it was 'cancer cancer cancer', everywhere y o u looked.. .eventually I could hear the word itself without feeling kinda sick, or really cold.. .I guess for me it meant the end of 'my former life' (small chuckle).. .it 'll never come back.. .but O K , y o u gotta accept things. . .my surgeon was O K , told me about some of his other patients, support groups, I met a few people and talked to them, that was good.. .so I'm thinking now 'cancer' is just a word, it's not this big scary monster...but at the time it was hard to even get past that... R : Brad.. .what kinds o f thoughts did y o u have about the cancer itself? H o w did you. . .envision it? Brad : L i k e E l l e n says, it's just a word.. .but at one point, when it all happened, cancer had all the power. . .we were both l iv ing in its power...I mean in different ways, but it had us by the throat all right... R : A n d what helped y o u as a couple to get to that point, to the point where Y O U had the power.. .took back the power over the c a n c e r -E l l e n : I think it was a separate thing...I mean, I had to see myself as being in control o f what happened, and I d id that, I think...I never really felt like I didn't have some c o n t r o l -B r a d : W e got the power back when we refused to be out of our minds with fear...we're not scared people...we're both very.. .tough and do-things kind of people, grab that cancer with both hands and wrestle it to the ground!...it's something we really have in common. . . R : Yeah. . . I can see that...I wonder i f there were other things that got y o u through...I know y o u talked about honesty earlier.. .um...what other kinds o f things helped y o u survive this experience as a couple? Brad : I guess we should mention our, uh, bizarre sense of humour, eh El len? E l l e n : Y o u mean Y O U R bizarre sense o f h u m o r -B r a d : V e r y funny. . .make me look bad in front of her, go a h e a d -El len : Y e a h , w e l l -B r a d : I seem to recall a certain incident in the hospital...? E l l e n : You're on thin ice, B r a d ! Brad : H e y , it's not that bad...what happened was, E l l e n went to this class, something new age, and I was meeting her afterwards, it was just before Hal loween, so I thought I'd surprise her by wearing 160 m y Halloween costume f r o m the year before, which just happened to be an accident victim.. .so I walk into the lobby all covered in gore, fake eyeball thing, gashes and scars and blood, the whole nine yards.. .people were screaming, I just about peed myself. . . E l l e n : (sighs in exasperation) Brad : H e y , come on...it was a blast! E l l e n : Right. . . R : That's quite a story, Brad.. .aside f r o m this.. .incredible sense of humor, was...was this something y o u shared, Ellen?.. .the humour aspect... E : O h , sure.. .Brad could always make me laugh. . .but. .sometimes he's...just crazy... R : Were there any other things...what other particular strengths in your marriage or outside things did y o u draw upon? E l l e n : I guess that's about it . . .well no, m y family . . .wel l , really, m y S I S T E R S . . . t h e y were great...took me to all m y appointments, brought food over...they were there, a rock.. .yeah, Laura and Teresa were amazing...they took the time, they were always ready, always there...and they really kept the m o o d up, 'cause it's not like we were exactly feelin' d o w n or suicidal or anything but still...they kept everything positive... Brad : Y e a h , they were great...great...I never really got along with them all that well. . .especially Laura . . .you know, the in-law thing...but I gotta say they took care o f E l l e n , took charge, got it all done.. . R : M m - h m m . . . a n y t h i n g else, things about the two of y o u that made the experience bearable, even perhaps...a positive experience? Brad: Well . . .we've always had this...strong physical attraction for each other...right f r o m the start...it was probably what kept us going. . .we used to have a big fight, then make up.. .it wasn't just sex, don't get me wrong.. .it was a chemistry, attraction o f alikes, I guess.. .feudin' and fightin' and makin ' up. . .well , o f course that kinda stuff was a no-go during the cancer, things were very different...but I never thought that attraction was G O N E . . . I thought it was still there...might have been different f rom Ellen's . . .you know, she was pretty weak, and tryin' to deal with it a l l -E l l e n : . . .Yeah. . .when I had the surgery, I was worried.. .what was going to happen to that..that thing Brad's talking about. . i t wasn't number one in m y m i n d but anyway, it worried me...I remember thinking that he asked to see m y scar and I thought, 'I'll be able to tell by his face how he feels'...but then I couldn't really tell...he didn't really react very much at first-B r a d : I didn't know what to do. . .how was I supposed to react...she'd just gone through surgery, I want her to feel it's O K but I can't just throw myself on her., .or should I throw myself on her?...do I W A N T to throw myself on her? (chuckles) . . .God, what do y o u do?...it looked so horrible. . .finally I just said exactly what I thought, told her it wasn't a pretty sight, but it's O K , it'll heal up. . . E l l e n : H e just said what he thought . .and he seemed so upset at what the surgery had done to me, that was k i n d of...sweet...I appreciated that...I felt the same way but I was supposed to be so upbeat about it al l . . .well , I wasn't, it wasn't O K . . . a n d B r a d just said that right out loud. . .and it hurt but it was true... R : S o y o u appreciated it . .yeah.. .so. . . it sounds like it was very diff icul t . . t rying to accept this d i f f e r e n c e -E l l e n : W e l l , in a way I felt like an alien in m y o w n body, it was terrible...so who'd want to even think about sex or anything like that . .and I was also very tired, and m y body felt very sensitive, so it wasn't very good.. .it was uncomfortable...I didn't want to be touched too m u c h as I recall.. .we were trying to be like ourselves, I mean like the ourselves f r o m before, but we weren't, we couldn't... Brad : W e were very physical before, probably more than other people...I mean, uh.. .we were very active, y o u could say athletic (laughs)...uh, Ellen's a strong woman, not just physically but . .she asserts herself, she's not afraid to be like that... E l l e n : Y e a h , and here I was this weakling, I'd lost weight, no muscles like before, I was always toned. . .but . .oh, I was so mixed up...I wasn't really me...so...I was happy that B r a d made the effort, I guess, but it wasn't any good, it wasn't like before...I thought, this is so terrible, so lame, maybe I 161 should tell B r a d he should find someone else...I'm holding h i m back, why should he go through this pathetic exercise to make me feel better... B r a d : I didn't know it was so bad. . .well , I knew it wasn't no porno scene (laughs)...but...well...it got better...didn'tit? E l l e n : It was quite a w h i l e . . ! think we were both scared...shocked by how different it was, yet we were really not different people at all...I know I was scared . . ! thought 'If this is the way it's going to be, no thanks'...but then, I started feeling better, and not so sick and tired all the time.. .and at some point I went back to work, just part t i m c . b u t I know that was a good.. .a good thing for me, made me feel like I'd maybe come through this thing...this nightmare.. .and I was talking to the other w o m e n , and one of them said something I thought 'What?'...she said the sex was actually better afterwards...wow, I thought, O K . . . B r a d : Y e a h , when y o u went back to work things c h a n g e d . . ! felt, O K , you're stronger, I don't have to be the R o c k o f Gibraltar all the t i m e . . ! stopped thinking y o u were sick.. .it was closer to the old Ellen. . .yeah, it was like y o u were yourself again... E l l e n : Y e a h , b u t . . ! really wasn' t . . ! had this appearance of the o l d Ellen. . .but inside I think it was actually hitting me for the first time, in a w a y . . ! tried to show a good face to the outside world.. .everyone had been looking after me, putting themselves out, changing their lives around, catering to m y every need...but at work I felt spaced out.. .like a post-partum depression thing maybe.. .yeah.. .so everything looked like normal, back to the old way, she's a cancer S U R V I V O R now, Y A Y L . b u t inside I was just so numb, depressed...and I couldn't call on anyone, they'd done so m u c h a l r e a d y . . ! drank a lot, I think. . ! . . .drank too much. . .yeah. . . Brad : Y o u know, it's weird. . .you seemed so O K . . ! thought things were g o o d . . ! was out with the animals a lot, playing sports, doing some w o o d w o r k i n g - t h o u g h t things were getting back to normal.. .it was more normal, but I guess it was still weird, in a way.. . it was normal but it was dif ferent -E l l e n : It W A S a weird t i m e . . ! got some medication, anti-depressants...that didn't help.. .so I went on a retreat—my friend A n n e suggested it...it was very useful.. .a retreat for people in recovery, recovery of any k i n d . . ! met some people there that were in such worse straits than m e . . ! remember I came back and went into the kitchen and just wrapped m y arms around Brad. . . ( long pause)... Brad : Yeah. . . E l l e n : It was one of those moments.. .sounds like a movie , something with M e r y l Streep!.. .yeah, s o . . ! realized I was a very lucky woman, I saw things in perspective...at the retreat we all kept a gratitude journal , it was a very helpful thing...that moment, standing there holding Brad , I fe l t . . l ike m y life was O K , that yes, me and B r a d were going to be O K , we were still a c o u p l e . . ! let myself accept that, I guess.. .why I couldn't accept it before I don't know but I guess I wasn't ready... Brad : (laughs) I thought ' O K , what's going on?'...but that's when we sort of got back to normal , having sex again...it was G O O O O D sex! E l l e n : Brad.. .please! R : Well . . . thank y o u both for that..so...let's look at another apsect of this...I'm wondering.. .what was it like to experience this so early in your marriage, this experience of cancer which. . .usually w o u l d occur at a m u c h later time in a marriage? E l l e n : It was devastating—a terrible s h o c k . . ! mean, I was Y O U N G . . . o n l y 36...just turned 36.. .when I was diagnosed...that's not an age when you're expecting you'l l get C A N C E R — o r any disease like that. .so, I mean...wow...what's going to happen to me, what's going to happen to m y marriage, what's going to happen to m y job?. . .we had such fun, in the early years o f our marriage...we were still barreling along why should that end so early?...we travelled a lot, went camping, had parties...lots of good times.. .and besides, I was young, m y body was not an old body, and it was in shape, healthy—we were still young, well young for nowadays I mean.. .we were both in good shape, pretty good diet, took the vitamins and everything.. .now here I'm 36 and this is happening?...(shakes head)... R : S o y o u felt that 'this isn't right, this just shouldn't be happening'. . . 162 E l l e n : Yeah. . .definitely. . .well , I realize anything can happen at any time...I mean, it C A N happen to y o u , I know that...but at the same time this can't be happening, too young, too healthy...it was an unreal experience.. .unreal... R : W a s it l ike that for y o u too, Brad , c o m i n g at such an early point in your marriage? Brad : It was weird...I mean, all marriages have stuff to deal with...but I guess we thought it w o u l d be the usual stuff...but C A N C E R L . m o n e y , kids, M a y b c . y o u know, the typical stuff...but even more than that...it's not like we were these sickly people, or junk f o o d fanatics, or l iv ing next door to a Three M i l e Island or something.. .we were kinda health nuts really...really active, s w i m m i n g and hiking and sports...so is all that just crap, y o u know?...what's the point?...what is the fu. . .bleepin' point?. . .mmm...(shakes head)... E l l e n : A n d here's our parents, still doing O K . . . w e l l , sure, some health problems, y o u know, b u t . . d o i n g O K otherwise.. .now m y parents have to look after M E ? . . . m y m o m was not prepared for that, not prepared at all . . .my dad, well...he's pretty even-tempered, just goes along with the flow.. .has to, to put up with mom.. .but I'm sure he was very worried, so worried about me, in his o w n low-key way...he's such a sweetie... B r a d : I thought your dad handled it just aces...he was aces... E l l e n : Y e a h , I know...he's quite a guy, all right... R : I'm curious...has this experience made any difference in . . . in how, how y o u relate to.. .how y o u fit i n with. . .your friends, your age group? Brad: (laughs) O h , yeah...I mean, man.. .I 'm going through this thing, this cancer thing, we're going through hell . . .and there's our friends...I mean, some were great, don't get me wrong.. .but I don't think they understood...it's l ike, normal friend relations went o n , just like before, with me mostly, E l l e n was in her treatment...but it seemed so...bizarre...they didn't know what we were going through, they couldn't . . so I'm out drinkin' with the guys, I'll never forget this, I'm out drinkin' . . .and one of m y friends tells this boob joke.. .I could not believe it...I laughed, I mean it was a F U N N Y joke, but meanwhile here's m y wife. . .can y o u believe it?...so...people are weird...I know they don't understand, but... E : O f course they don't understand, how can y o u expect them to understand?...but that's O K . . . b y and large everybody was O K . . . b u t it was weird. . .when I got wel l , started seeing m y friends again and everything...I mean socially, like movies, going for lunch.. .it was weird, I could not figure it out...it felt like everybody...these are m y girlfriends, y o u know.. . i t felt like they were all looking to me for something all the time.. .like I was the new leader of the pack!. . .I 'm the big cancer survivor, we have to give her the say-so first..hmmph!...anyway that went on for awhile, it's O K now, back to normal thank G o d . . . R : H m m m . . . s o what about . .now. . . is there any difference...have there been any lasting effects in the way...the way y o u relate to your friends? Brad : I feel older than them...they're great guys, it's part of their charm. . .but . .no, everything's good, everything's O K . . . E l l e n : I always thought . .Brad seemed different than his buddies...I noticed it when I met him...they're...he's more mature.. .well, as mature as B r a d can get! . . .mmm...I guess it's probably a bit more pronounced now.. . Brad : But y o u know she's always naggin' me that I'm too IMmature. . .crazy woman. . .make up your mind, woman! R : (chuckles).. .can I ask y o u about how.. .um.. .what kind of changes y o u have experienced as a couple because o f this experience.. .how has this changed your marriage? B r a d : W o w . . . E l l e n : Yeah. . .wow. . .wel l , I guess for starters, I'd say that I feel it's stronger...yes, definitely stronger... R : H o w so? E l l e n : We've been through this thing, and.. .we didn't really go through it together, more like separately...but when it was over there was a chance it could have gone either way. . .nobody's taken 163 lessons in how to get through cancer, let alone how to get through the aftermath...I guess we always had a bond.. .but something like cancer, it sort o f supersedes other things... Brad : Y e a h , it's hard to describe...other couples who have been through this k i n d of thing would understand...I don't think W E really inderstand it! . . . E l l e n : L ike . . .we don't sit around and analyze things, so we probably D O N T understand it...but I always felt that before, we were both so hard-headed and stubborn, we were looking out for ourselves more than for us as a couple. . . Brad : I guess it wasn't surprising, we're both so independent...I always l iked that in Ellen.. . then when she got the cancer I wanted to do something to help her or protect her but there wasn't m u c h I could do. . .any way, she's a tough cookie, I remember when I first tried to open a door for her she just about bit m y head o f f -E l l e n : Y e a h , whatever. . .Brad knew I was strong, but there's strong and then there'a S T R O N G . . . I couldn't have come through the surgery and the radiation like I d id , i f I didn't have some extra strength...Brad always saw hinself as this big macho guy, he likes to lay on the 'protect the little woman' thing...I never let h i m get in the door with that stuff...but he wants to be protective o f me now for different reasons, I think. . .but . .so now he's protective of me as a strong woman, not protective o f some pretty little thing...he might want to be with some helpless little thing, but maybe not so m u c h anymore! . . . Brad : Yeah.. .it 's interesting...she was kind o f helpless, in a sense...I mean, I guess we're all k i n d o f helpless, have to depend on the doctors...but I never saw her as helpless and I don't think she d id either...it was a test of strength, and a person can either pass the test or see themselves as helpless, I can't hack this, I give up...I...I never for a minute thought that E l l e n w o u l d give up. . . i f it's a test of strength, El len ' l l be in there givin ' it her best... R : M m - h m m . . . a r e there any other ways things have changed for y o u as a couple? E l l e n : (pause) W e have this. . .kind of s lowed-down life...I mean, before, we were such go-getters...always o n the go, camping, hiking, skeet shooting, trips...it was non-stop.. .now we aren't always rushing around, a m i l l i o n things at once...that was crazy, but fun.. .so. . .we enjoy quiet times, whereas before, it never occurred to us to H A V E quiet times.. .like for instance, last week we never went out once all week...just cooked dinner, saw some vids. . . Brad : Y e a h , it's cool. . .and I think I've...uh...streamlined m y life, uh, we've both streamlined our lives...it's not so complicated.. .not so m u c h stuff... E l l e n : That's true...we always had so m u c h stuff around, projects, something was always on the go...it was like, m y daybook was crammed, no spare time.. .always rushing around buying stuff, arranging things. . .doing m y collages, m y pottery.. .Brad with his sports and cars and bikes. . .and all the animals, looking after them...so m u c h to do around the house, it's a b i g house, needs f i x i n g up...it was so hectic . .but we loved it, got a lot o f energy f r o m i t . . i t was O K for that time I guess... R : A n d now it's a different time.. .yes.. .and w o u l d y o u say...that things are different...have changed with. . .how y o u relate to each other as man and woman? Brad : A s man and wuh-man.. .whoa!. . .she's gettin' into the d o w n and dirty stuff now (laughs)...yeah, baby! . . . E l l e n : We. . .we have found our way back, I w o u l d s a y -Brad : E l l e n was the one w h o had to be O K about—being O K with this way back thing...I guess women are more tuned in to these t h i n g s - w h e n she got back f r o m the retreat it all sort of came together...it's like we stopped pushing it or something.. . E l l e n : Brad, I think that's exactly right...I know I was very tense, and then all o f a sudden I wasn't—all of a sudden I felt glad to be alive, thankful that I was alive and doing O K . . . h a p p y that y o u were still there, m y j o b was still there, m y family was all around me., .it was like a big shadow was lifted off me.. .and that's not to say it's been easy, it hasn't . .especially the fear it might come back.. .but I'm happy, and I couldn't imagine ever being happy again back when I was diagnosed.. . R : It sounds like there's certainly been a change.. .speaking of change, what do y o u think is different or unique about your relationship? 164 E l l e n : Probably nothing! (laughs)...hundreds, thousands of couples go through this. . .probably not so many who are as y o u n g as us!. . .so maybe that's unique, we are a young couple who had to deal with cancer.. .when we didn't expect it, or something like that for years to come.. . R : Brad. . .? Brad: I feel that we're unique...we're Super C o u p l e ! (both laugh)...I...other couples all think they're unique too...but we actually are!.. .well.. .I think we both know there's lots of strength there, in both of us individually and in the marriage too...it's good to know it's there, that we can count on it... E l l e n : Yeah. . .I think we feel different than some o f our friends...their relationships are, like, settling in , some are good, some bad...but I wonder how m u c h of a base there is. . .maybe that's what we have, a stronger b a s e -B r a d : W e l l , i f this cancer thing can't break us up, I guess N O T H I N G can.. .plus y o u just, as they say, 'see life differently'. . .all that stuff is true...I know I was angry about the k i d thing, hadn't really accepted that, was angry at Ellen. . .yeah, that coulda broke us up.. .I 'm O K about it now.. .maybe still a L I T T L E pissed off L . b u t hey, that's life, I guess I'm stuck with her... E l l e n : It still isn't easy...we're still the same p e o p l c . I felt like nothing would ever make that k i d thing all right.. .like no matter how good life was, it wouldn't matter...to B r a d -B r a d : That's true... E l l e n : S o what could I do. . . Brad : There was nothing y o u could do...but it all seems silly now, trivial—we've got lots of cats and dogs and birds and horses... E l l e n : Y e a h , they're our kids. . . R : Yes . . .may I ask y o u how this experience has changed your view of the future? E l l e n : It's a whole new picture for me.. .personally, I've really looked at what I'm doing, where I'm going.. .I 'm going back to school next fall. . .I like m y job , b u t . . y o u know. . . R : What about how things have changed regarding—your future as a couple? E l l e n : (laughs) Y o u know, it's l ike the future is more secure, yet at the same time L E S S secure...it's strange—I mean, I feel we're more secure in our marriage, but.. .and I feel more secure as a person, I think...but it's l ike, there's no safe, secure future anymore, anything could change at any time...yet that was true before!. . .so it's very strange...I guess...no...I don't know—how about, it's more meaningful when we plan now, because we know how easily it could all c h a n g e -Brad : Yeah. . .also we pay more attention to security things, like R R S P s , life i n s u r a n c c . a l s o it's easy to discuss those things now, but before money was such a touchy subject for E l l e n , such a crazy big deal...she's way more relaxed, calm, these days...doesn't think I'm trying some funny thing just because I want to discuss finances...I'm very practical, I l ike to go through things financially, know where I stand—Ellen was so weird about money, like her whole family . . .now, E l l e n wil l talk about money like it's not the big taboo... E l l e n : It's better, yeah.. .now I also appreciate Brad's expertise in those things...I used to be so suspicious o f it...just never wanted to listen, thought he had ulterior motives...I've always been kind of secretive about money matters, it runs in the family. . . I have no idea how m y parents or m y sisters are doing financially...they think all that stuffs a private matter...Brad's so not like that, plans everything about money, lays it all out. .sensible, has all his R R S P s organized, investments, life insurance—I won't say I'm any financial whiz now, it still makes me nervous, but at least we're talking, I know where things are.. .know about the assets...gee, who is that talking? (laughs)... Brad : Y e a h , it's more like a marriage that way, like m y m o m and dad, everything was discussed, out on the table, m y dad did the big stuff and m y m o m ran the h o u s e h o l d - m o n e y ' s no big deal as long as y o u think of it as a necessary evil and don't make such a big deal out of it... E l l e n : Y e a h , I realize that Brad's actually...that talking about money is actually a sign of commitment—I used to think it was a sign of...he's trying to control me! . . . Brad : Y e a h , so I think we have a way better handle o n the future now. . .moneywise I mean...we're also more conscious of having to save...I was always pretty good but E l l e n was b-a-a-d...I l ike being able to talk to her about money stuff and she doesn't run away screaming—gotta keep her in 165 line, she's got no idea of what a dollar's worth.. .we'd be broke if I let her manage the money! . . . E l l e n : Probably. . . R : W h a t about other plans, like career, or how y o u think about work.. .what kinds of changes have there been? Brad : We're both pretty happy in our jobs. . .no complaints. . .we haven't had to change m u c h there... E l l e n : N o , I l ike m y job. . .but I'm going to take courses so I have more options.. . R : What do y o u think has been the biggest or most suprising or most gratifying thing you've learned f r o m this experience . . ! mean, learned as a couple. . .mmm.. . learned about your marriage? E l l e n : W e l l . . ! don't k n o w . . ! guess we learned that...we're O K , we're doing O K . . . a n d the physical . . .your appearance and so on.. .and also the whole sex thing.. .is maybe not as important as I thought it was...well...it's important, but maybe it's not the biggest deal, the big thing between men and w o m e n like it's always portrayed. . ! thought, w o w , our chemistry is so powerful , then I thought, wel l , now that's on hold , can't have m u c h chemistry when you're going through that sort of thing, you're just struggling to survive, to get...get through the day, struggling not to give i n to the fear or the depression or whatever...I'm not just talking about sexual chemistry, that's part o f it but more like the energy...there was always a bit of a . . . confl ict . .push-pull type of t h i n g . . ! say to-may-to he says to-mah-to, y o u know?...secretly I think we l iked that even though sometimes we'd fight like cats and d o g s . . ! hate that saying, our cats and dogs get along great. .anyway.. .then.. .I was going through everything, had to deal with everything.. .had no energy for much else than getting through the surgery, then the radiation.. .focusing on staying positive...it was like, u m . . ! o s t m y train o f thought. . (smiles) . . .oh yeah. . .now our marriage is so Q U I E T . . ! thought to myself that B r a d must be so bored, when wil l he be outta here...there's none of our usual e n e r g y . . ! couldn't do anything, participate in anything like we used to, all that stuff...so I was in the middle of this quiet . .everyone else was out there, doing the normal things.. .and I thought, oh , this is way too middle-age for Brad , and what if this is the way it is. . .for g o o d . . ! mean, I'll probably recover, lots of people do, but even i f I recover, what's it going to be like. . . R : S o when y o u did recover, what d id you.. . learn, how were things not like maybe what y o u were expecting? In the marriage, I mean? E l l e n : It was like I...took that quiet thing and brought it along with me.. .into the next phase...we related to each other differently, I think...it happened gradually.. .nothing i n t e n d e d . . ! l iked our marriage before, it was great...but I guess it couldn't stay the same even i f we'd wanted it to...before, it was like, there was a lot of fun, passion, excitement, up-and-down, run here, run there...but sometimes lots of arguing, turmoil , stress. . ! don't know about Brad, but I often felt, 'Is this gonna last? are we gonna make a go of this?'...our friends razzed us about it all the time, called us T h e Bickersons'.. .(chuckles).. .so...afterwards...it just seemed like the atmosphere changed...it was so more peaceful.. .we seemed so more together...as i f some step had been taken...but not consciously. . .but it was so different . . B r a d : Different, yeah...(laughs)...but I k n e w . . . O K , things have c h a n g e d . . ! knew...things w o u l d change, maybe change a lot . . i t was hard to imagine exactly h o w . . ! didn't have all that m u c h time to think about it . . .maybe a good thing...but it was for sure a big-time learning experience.. .sink or s w i m kind o f thing, see how y o u handle T H I S , y o u guys!. . .lots of bein' in the d a r k . . f o r me I mean...but looking back I think that was good.. .or. . . l ike they say that when y o u have something happen to y o u like cancer, y o u can have all the support around y o u y o u want but in the end you're alone with i t . . so , in a sense we were both alone with it, with E l l e n having to make her peace with the surgery and the way things had changed for her, and me...just needing to be O K with it, not go nuts on her, stay strong...and I guess I learned how to do that. .be strong when I was up against something I couldn't d o anything about, really.. .couldn't begin to understand what she was going through.. . E l l e n : Y e a h , I...he was so...dense about. . the whole thing.. .we stayed apart a lot of the time...there was not m u c h c o m m u n i c a t i o n . . ! couldn't stand the sight of h i m somet imes . . ! read in a book that women often feel that way, something to do with the man representing...there's a fear, a really 166 powerful fear that he won't stay with y o u , he won't f ind y o u attractive anymore, so. . .you keep h i m away f r o m y o u with anger so y o u antagonize h i m to the point where you.. .where your fears come true... Brad : Y e a h , there was plenty of pushing me away going on...not A C T U A L L Y , I mean not literally but...but I didn't go away, just kept buggin' her, tried to pretend things were goin' on just l ike normal.. .tried to make her l a u g h -E l l e n : I was oblivious. . .most of the time...I was in a world that people could visit, but they didn't live there with me...I was alone, I felt very, very alone, very isolated...but like B r a d says he tried to pretend our life was going on just l ike before...that would infuriate me, but...at the same time it was...it was strangely...comforting...it was so B R A D . . . j u s t keep chuggin' along, he's always been like that...he wanted me to believe that everything was the same between us, I guess...I was feeling that it couldn't be...I was almost resigned to it . . .maybe I talked myself into it, but I believed, in some way anyway, that...that he's...he's acting so normal , but what's really going on with him?. . . R : W a s there a time, a moment. . .some particular event or milestone...where y o u realized that...Brad is O K with this, with what has happened? E l l e n : I guess. . .um.. .well , I remember one afternoon, I was sitting in the big chair, it was a beautiful day, the cats were laying around, I had the afghan around me, B r a d was out working o n the side fence...he came in and...came in the l iv ing room.. .asked me how I was doing. . .asked me i f I'd like to go to Restaurant A . . . o u r favourite restaurant...that night.. .said they were having some M e x i c a n theme for the week or a couple o f weeks.. .well. . .it , it was so like nothing had happened, like.. .I didn't immediately in m y m i n d go to the cancer thing, to the not-feeling-well thing...I think it was the first time that didn't happen...I felt so ca lm, like some weight had come off me...I said ' O K , sure', but it occurred to me in that moment how hard it must have been for Brad , all those weeks...I'd never thought about that before...I was always so alone with m y o w n stuff.. .and now for the first time I didn't feel like I was apart f r o m h i m and he was just a big liar.. .really wanted to just get outta there...I felt this big. . . l ike a wave...of...I guess, what?, relief, happiness, love, who knows what else...I just said ' O K , sure', but...it was such a powerful feeling...I think that's when I R E A L L Y started to recover, in the true sense of the word.. .since then it's been good between us. . .well , sometimes I still get nervous or irritated...I'm getting better, but it's still in the works.. .but . . .well . . . R : Brad , d id y o u have any. . .similar experiences? W h e n y o u knew it was gonna be O K ? Brad: Not really...I never knew what was goin' o n ! (laughs)...it seemed like she came around to speaking to me nicely again eventually...I do remember the retreat made a difference...but yeah, that night at Restaurant A though...it was very relaxed.. .Ellen didn't seem so...distant...she looked really good...don't ask me why, I don't remember any details. . .but. .yeah, it was a good evening.. .and eventually she came around to...I guess accepting I was still there, O K , he's still here...through it all , I still thought she was m y wife, in all that means...I wasn't planning on going anywhere...I mean it's normal to wish it hasn't happened, feel like y o u wanna be somewhere else...but y o u don't leave just because the d o g has to have his leg amputated or the horse is going blind or somebody has a disease!...but she couldn't accept that. .didn't think m u c h of me, I guess!.. .so I waited it out, what else could I do?.. .so yeah, but when she really accepted that, it was a B I G relief...I was S O tired o f . . b e i n g the vi l lain , I guess, feeling like I was doin ' everything wrong. . . E l l e n : Well . . . I just. .1 was in another place...until that day.. .what can I say, I just had a realization.. .you need to focus on yourself, and then when y o u can y o u hope everyone wil l understand... B r a d : I do, now.. . R : Mm-hmm. . .wel l . . .we ' re c o m i n g to the end o f m y quest ions . . ! just have two more.. .can y o u tell me, is there anything else about how the cancer experience has meant so m u c h to y o u as a couple and how it has affected your marriage.. .now that you've had some distance f r o m it, have gone through it and come out the other side...what is the ultimate meaning of the experience? Brad : T h e whole couple thing...the marriage thing...it's such a struggle.. .you never think the other person's exactly right, you're always thinking of some way they should change, w o m e n more than 167 men I think!...but...that's kinda out o f there for us...that all seems so pointless now. . .we coulda lost everything, the whole marriage...and we could easily have thrown it away, too...it's tough, it's one helluva tough ride, this cancer thing...but now.. .what was all that about?...what was so important that we'd have all these big fights...at this point we're not really going to change...stupid...stupid...so any way...it's not like we don't fight now.. .we get into it sometime...but we don't have that antagonism like we used to...it's more calm...relaxed.. . R : M m - h m m . . . E l l e n ? E l l e n : Y e s , it's definitely much calmer, m u c h more relaxed...also I think...it's calmer and more relaxed because there's more of a level of respect going on...we're looking at two people who.. .went through hell , in their o w n individual ways, different hells, but still hell . . .and. . .you know, those two people d id O K with it, learned f r o m it, didn't let it destroy them.. .in fact, they're stronger now than they were before and hopefully the marriage is stronger too...I think it is. . . Brad : W e l l , let's face it...we both feel 'Hey , w h y should we go through something like this and N O T survive?'(both laugh)... R : Indeed...indeed...to wrap things up, can y o u tell me. . . in any way y o u want to answer this question, whatever feels right to you. . .why do y o u think y o u got cancer, why was it your marriage that it happened to? E l l e n : (long pause, sighs) I guess it was a test...I don't know any way to say it other than...there was no obvious reason, like heredity or bad health or bad diet...I really haven't thought m u c h about it, but I guess y o u get tested in life by whatever and this was ours. . .who knows, who can say why some people get in a plane crash, w h y some people have D o w n ' s syndrome babies...I mean it doesn't make any real sense, y o u can't logic it out.. .like I said before, I don't think we really understand it, maybe it's better not to think about it too much. . . R: Brad. . .any thoughts? Brad : (shakes head). . .you got me! . . .we just don't sit around agonizing about stuff...gotta leave that to all them philosophers and religious nuts. . .you know, like that Dipst ick C h o p r a , tellin'everybody what's what...besides which , why is it so important?...it's really not gonna change things, so get on with your life, keep pluggin' away...there's not m u c h else y o u can do...just be happy y o u passed the test and got outta there... R : Mm-hmm.. .well . . . that 's it for m y questions...you've been terrific, and I really want to thank you.. .I so appreciate y o u giving me this time and sharing your thoughts and feelings with me.. .with such honesty and with such detail.. .we'll be meeting again soon, as I explained before, for the second interview, to corroborate my.. . to give y o u a chance to corroborate, validate m y written findings f r o m this interview. E N D O F F I R S T I N T E R V I E W 168 S E C O N D I N T E R V I E W R : T h a n k y o u for c o m i n g to this second interview, I really appreciate your help. A s I mentioned before, we'll be going over today what I have prepared f r o m our first interview. I'll be giving y o u what I've prepared f r o m our first interview, what we call the 'narrative account'. I'd like y o u to read it very carefully and make sure it's accurate, that it accurately represents the story of your cancer experience as a couple. It's very important that the narrative account be accurate and that it represent as fully and completely as possible your experiences. Please do not hesitate to tell me i f it is inaccurate in any way, or if something is missing, or i f y o u are uncomfortable in any way with any of the information I have included. I'd just like to review a few points f r o m the consent f o r m y o u completed before we started this process. Please remember, your participation is voluntary. Y o u can withdraw at any time. I have used pseudonyms and removed other identifying information to protect your anonymity. A n d , if y o u have any questions, please do not hesitate to ask them. D o y o u have any questions before we start the reading? Brad: H o w long wil l it take? (laughs) R : W e l l , I'd like y o u to read the narrative account carefully and thoroughly.. .I w o u l d estimate maybe a half hour to an hour? E l l e n : He's just kidding . R : E l l e n , do y o u have any questions? E l l e n : N o , I don't think so. R : O K then, here are the narratives. Please take your time. 


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