UBC Theses and Dissertations

UBC Theses Logo

UBC Theses and Dissertations

The cultural construction of breast cancer Mears, Bronwen Jane 1997

Your browser doesn't seem to have a PDF viewer, please download the PDF to view this item.

Item Metadata

Download

Media
831-ubc_1997-196232.pdf [ 17.67MB ]
Metadata
JSON: 831-1.0087949.json
JSON-LD: 831-1.0087949-ld.json
RDF/XML (Pretty): 831-1.0087949-rdf.xml
RDF/JSON: 831-1.0087949-rdf.json
Turtle: 831-1.0087949-turtle.txt
N-Triples: 831-1.0087949-rdf-ntriples.txt
Original Record: 831-1.0087949-source.json
Full Text
831-1.0087949-fulltext.txt
Citation
831-1.0087949.ris

Full Text

THE CULTURAL CONSTRUCTION OF BREAST CANCER by BRONWEN JANE MEARS B.A., Simon Fraser University, 1981 M.H.Sc, University of Toronto, 1984 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE STUDIES Department of Anthropology and Sociology We accept t h i s thesis as conforming to the required standard UNIVERSITY OF BRITISH COLUMBIA February 1997 (g) Bronwen Jane Mears, 1997 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available .for reference and study. I further agree that permission for extensive copying of this thesis for • scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. •• Department of The University of British Columbia Vancouver, Canada Date , c7 • , DE-6 (2/88) 1 1 A b s t r a c t This thesis explores the c u l t u r a l construction of women's experiences with breast cancer i n Vancouver, B r i t i s h Columbia. After completing treatment for breast cancer women must reformulate t h e i r personal biographies to include the diagnosis and treatment. This reformulation includes the reconstruction of s e l f , both i d e n t i t y and body, and of biographical time and takes place within a s o c i a l context. In t h i s thesis I explore the c u l t u r a l frameworks that guide these reformulations. I re f e r to these as breast cancer narratives. I interviewed 32 women who have completed treatment for breast cancer. There are two sets of data: one set of 2 9 c o l l e c t e d i n single interviews, and one set of three c o l l e c t e d over multiple interviews. I analyze the interviews looking for common themes and structures from which I constructed breast cancer narratives. In Canadian society, cancer has been commonly portrayed as a "death sentence". Recently, there has been an attempt to transform t h i s portrayal of cancer to one of a disease which can be survived. The breast cancer narratives include both portrayals of cancer, r e s u l t i n g i n an ambiguity about s u r v i v a l . This ambiguity i s resolved by constructing a viable discourse of hope for the future. During the process of diagnosis and treatment the participants learn a discourse of hope which i s informed by biomedical culture and focuses on successful treatment. However, I l l once treatment i s complete, the pa r t i c ipan ts are faced with chal lenges to t h e i r construct ion of hope, stemming from the b e l i e f that cancer i s a terminal i l l n e s s . To meet these chal lenges they modify t h e i r d iscourse of hope. I i d e n t i f y four c u l t u r a l schema used by p a r t i c i p a n t s to reformulate t h e i r personal b iographies . These schema l i n k concepts of what may have caused the cancer and the evolv ing discourse of hope. This m u l t i p l i c i t y of schema leave the po ten t ia l fo r c o n f l i c t . As a r e s u l t of the mul t ip le schema and modi f icat ions to the discourse of hope the construct ions of breast cancer are d iverse . Therefore there are mul t ip le and c o n f l i c t i n g construct ions of breast cancer in Canadian Soc ie ty . This i s an important considerat ion when developing serv ices fo r women who have had a d iagnosis of breast cancer. i v T A B L E O F C O N T E N T S Abstract i i L i s t of Tables v Acknowledgements v i Chapter I - Introduction 1 Chapter II - Development of a Theore t ica l Perspect ive . . . . 8 A. Narrat ing I l l n e s s 8 1. I l l n e s s as Lived Experience 8 2. Narrat ives and Narrat ive Thought 13 3. I l l n e s s Narrat ives 15 a. D isrupt ion and Repair 16 b. The S e l f , the Body and Biographica l Time . 16 c . S o c i a l Context of I l l n e s s Narrat ives . . . 21 B. Cu l tu ra l Construct ion of Cancer 24 1. Cancer Metaphors 27 a. Construct ion of a Discourse of Hope . . . . 29 b. The Causes of Cancer 31 c . Uncertainty and the Future 37 C. Conclusion . 38 Chapter III - Research Methods 4 0 Chapter IV - Background Information 49 A. Breast Cancer S t a t i s t i c s 49 B. Staging of Breast Cancer Tumours 52 C. Health Services Ava i l ab le to Women Who Have Had a Diagnosis of Breast Cancer 54 Chapter V - Narrat ives of L i v i n g With Having Had a Diagnosis of Breast Cancer 57 A. Anne 58 B. Rebecca 97 C. Conclusion 128 Chapter VI - The Story of Diagnosis and Treatment 131 A. Discover ing Something i s Wrong 143 B. Being Diagnosed with Breast Cancer 144 C. Now You Have Cancer: making dec is ions about treatment 152 1. Surgery 152 2. Other Treatments 158 D. Going through Treatment 162 1. Ta lk ing about Treatment 163 2. Evaluat ing Treatment 169 V E. Stopping Treatment and Gett ing on with L i f e 177 1. Completing Act ive Treatment . . . 177 2. Attending Regular Checkups . 178 3. L i v i n g with the Phys ica l Consequences of Having had a Diagnosis of Breast Cancer 182 F. Conclusion 188 Chapter VII - Schemata fo r Construct ing Narrat ives of L i v i n g with Having Had a Diagnosis of Breast Cancer 191 A. Construct ion of a Discourse on Cause 192 B. Breast Cancer as a Point of Change 197 C. Breast Cancer as an Acute I l l n e s s 210 D. Breast Cancer as a Terminal I l l n e s s 215 E. Construct ing Breast Cancer as a Part of L i f e . . . . 220 F. Miscel laneous 232 G. Conclusion 243 Chapter VIII - Breast Cancer as S o c i a l Rea l i t y 247 A. Representing Se l f - "Mine i s not as bad as some other peop le 's" 263 1. Breast Cancer Is Not A l l That Bad 264 2. The Rhetor ic of Dealing with Advers i ty 267 B. Breast Cancer as a Family Experience 271 1. "Wi l l he leave me?" - Ta lk ing about spouses . . 273 2'. Other Family Members 277 3. Creat ing a Family History of Breast Cancer . . . 282 C. Breast Cancer and S o c i a l In teract ion 285 D. Becoming a Member of the Cancer Community 292 E. Looking to the Future 301 F. Conclusion 309 Chapter IX - Conclusion 314 A. Story of Diagnosis and Treatment 315 B. Rewrit ing Personal Biographies 320 C. Breast Cancer as S o c i a l Rea l i t y 327 Bibl iography 335 AppSndix I - Topics covered in 29 short interviews 354 Appendix II - Recruitment Let ter fo r Long Interviews . . . . 355 LIST OF TABLES Table I - Estimated New Cases and Deaths for Breast Cancer by Age i n Canada Acknowl edqemerrt s v i x I w i l l take t h i s opportunity to thank the members of my academic committee Dr. E l v i Whittaker, my superv isor , Dr. Nancy Waxier-Morrison and Dr. Wi l l iam McKe l l in . They a s s i s t e d and supported me through my doctora l s tud ies , inc lud ing through per iods of personal d i f f i c u l t y and i l l hea l th . I received a great deal of ass is tance from members of the s t a f f at the B r i t i s h Columbia Cancer Agency: Mr. Richard Do l l agreed to take on the r o l e as my supervisor at the Agency for part of t h i s research; Dr. Ivo O l i vo t to and Dr. T. Gregory His lop for t h e i r support and assistance in doing the research; Ms. L i z Dohan for her ass is tance in r e c r u i t i n g p a r t i c i p a n t s . Without the w i l l ingness of the p a r t i c i p a n t s to share t h e i r experiences of having had a diagnosis of breast cancer t h i s t h e s i s would not have been p o s s i b l e . In p a r t i c u l a r I would l i k e to thank Rebecca, Anne and Tr isha for t h e i r p a r t i c i p a t i o n . L a s t l y I would l i k e to thank my family fo r the unwavering support and ass is tance . In p a r t i c u l a r Stephen shared much of t h i s work and was a wonderful ed i to r and c r i t i c . Chapter I - Introduct ion 1 Attending to the p a t i e n t ' s d iscourse as i t evolves in the course of the i l l n e s s t ra jec tory enables us to understand r e l a t i o n s h i p s between dimensions of human su f fe r ing and the c u l t u r a l and s t r u c t u r a l context in which they e x i s t . (Kaufman 1988b:350) This t h e s i s explores the c u l t u r a l construct ion of women's experiences with breast cancer in Vancouver, B r i t i s h Columbia. To do t h i s , I focus on how women, who have had a diagnosis of 1 • breast cancer and have f i n i s h e d treatment, reformulate t h e i r personal biographies to include the diagnosis and treatment in t h e i r d a i l y l i v e s . I am interested in the c u l t u r a l constructs used to develop breast cancer na r ra t i ves , p a r t i c u l a r l y as they re la te to the conceptual izat ion of becoming wel l or "back to normal" a f te r a d iagnosis of a l i f e - t h r e a t e n i n g d isease . Many more people diagnosed with cancer are surv iv ing through the treatment per iod than before (National Cancer Ins t i tu te 1995). Concerns have been ra ised about the problems people may have i n returning to d a i l y l i f e a f te r such a diagnosis (Dow 1990, Hoffman 1989a, Mullan 1985, Quigley 1989). Research has a lso examined the p o s i t i v e r e l a t i o n s h i p between s o c i a l support and s u r v i v a l from cancer (Baltrusch and Waltz 1985, Funch and Marshal l 1983, Waxier-Morrison et a l 1991). I am in terested in how a person who has had a diagnosis of cancer conceptual izes the process of s u r v i v a l . Explorat ion of the boundary between I use the phrase "having had a diagnosis of breast cancer" rather than "with breast cancer ," fo l lowing the work of Juanne Clarke (1985). I do not want to i d e n t i f y the p a r t i c i p a n t s in t h i s study as people with cancer, as that suggests cancer i s the de f in ing qua l i t y for the i n d i v i d u a l s . 2 " i l l n e s s " and " s u r v i v a l " provides ins igh t in to the broader domain of the c u l t u r a l construct ion of i l l n e s s and heal th i n Canadian s o c i e t y . I am in terested in breast cancer for two reasons: f i r s t , because although a large number of women each year are diagnosed with i t and many d i e , a number survive for a s i g n i f i c a n t number of years a f te r diagnosis (National Cancer Ins t i tu te 1995); second, because there i s an increase in p u b l i c awareness o f , and d iscuss ion about breast cancer (Batt 1994, Greene 1992, Sof fa 1994) . In t h i s t h e s i s I analyze interviews with women who have had a diagnosis of breast cancer for the way in which they have reformulated t h e i r personal biographies (Bury 1982, Wil l iams 1984) to include the breast cancer in t h e i r everyday l i v e s . The story s t a r t s with the diagnosis of a cancerous tumour in the breast . When women are diagnosed with breast cancer, they must make d i f f i c u l t dec is ions about t h e i r treatment. These dec is ions are based on personal experiences and c u l t u r a l understandings shared in soc ie ty (Gi f ford 1986, Gordon 1990, 1991, Salzberger 1976). A l s o , through t h e i r i n te rac t ion with medical personnel and i n s t i t u t i o n s , these women are exposed to biomedical perceptions and b e l i e f s about women and cancer (Clarke 1985) , p a r t i c u l a r l y breast cancer (DeSantis 1979, S a i l l a n t 1990). They are confronted with s t r u c t u r a l manifestat ions of the p o l i t i c s and economics of the l o c a l heal th care system (Kaufman 1988b). The majori ty of women going through t h i s i l l n e s s t ra jec tory are a lso exposed to a l t e rna t i ve d iscourses about 3 cancer, from the media and s e l f - h e l p groups for example, and to the s t r u c t u r a l const ra in ts of d a i l y l i f e . Once the women have f i n i s h e d treatment, usua l ly about one year a f te r d iagnos is , they are no longer cancer pa t i en ts , but the in f luence of cancer on t h e i r l i v e s can remain profound. Biomedicine does not genera l ly recognize the experience of i l l i n d i v i d u a l s , p a r t i c u l a r l y women, as being a v a l i d or valued source of information (Kleinman 1988). However, i n te res t i s growing in the narra t ion of the i l l n e s s experience as one way of understanding i l l n e s s as l i v e d experience (Frank 1984; Good 1994; Kleinman 1988; Brody 1987; Conrad 1990; Garro 1992, 1994; Hughes 1992; Morse and Johnson 1991). The narra t ives of women who have had a diagnosis of breast cancer re la te how t h i s cancer becomes a part of t h e i r personal b iographies . In analyzing the nar ra t i ves , I use the concepts of b iographica l d is rup t ion and repa i r (Bury 1982, Wil l iams 1984) to h i g h l i g h t the process of incorpora t ion . I found that the p a r t i c i p a n t s 7 l i f e s t o r i e s are constant ly d isrupted and repaired as a r e s u l t of the chal lenges of l i v i n g with having had a diagnosis of breast cancer. This process of ongoing b iographica l repa i r extends wel l beyond the treatment per iod . The chal lenges faced by the p a r t i c i p a n t s can be understood as a cont rad ic t ion inherent in the c u l t u r a l understanding of breast cancer. Cancer i s commonly constructed as a "death sentence" (Patterson 1987). However, recent ly there have been attempts to reconstruct cancer as "surv ivable" i l l n e s s (Gordon 1990). In analyzing the personal s t o r i e s , I found t h i s change of meaning 4 has resu l ted in c o n f l i c t i n g in te rpre ta t ions of breast cancer. The i l l n e s s s t o r i e s undergo constant r e v i s i o n as the p a r t i c i p a n t s t ry to accommodate these contradictory in te rp re ta t ions . To provide a context for the reader to in te rpre t the narra t ives I have reviewed in Chapter IV some bas ic s t a t i s t i c s on the inc idence, mor ta l i ty and s u r v i v a l of breast cancer in Canada and B r i t i s h Columbia. These s t a t i s t i c s provide some information on the estimated number, i n 1995, of women who would be diagnosed with breast cancer and who would d ie from i t . During t h i s research I found that such s t a t i s t i c s are used in the c u l t u r a l construct ion of breast cancer, most commonly to state that breast cancer i s a ser ious d isease . In t h i s t h e s i s I take for granted that breast cancer i s se r ious , as i t i s l i f e - t h r e a t e n i n g . Chapter IV a lso includes a d e s c r i p t i o n of the staging of breast cancer tumours, that i s , the determination of the seriousness of the d isease . This provides the reader with a bas ic understanding of the biomedical construct ion of breast cancer and i t s treatment. Most p a r t i c i p a n t s knew the stage of t h e i r breast cancer, and they used t h i s information to evaluate the seriousness of t h e i r d isease . I have l e f t add i t iona l informat ion, such as descr ip t ions of breast cancer treatment to be t o l d by the p a r t i c i p a n t s themselves. F i n a l l y in Chapter IV, I have included a b r i e f overview of the heal th care system and serv ices ava i l ab le to women in the Lower Mainland of B r i t i s h Columbia who have had a diagnosis of The Lower Mainland includes the c i t y of Vancouver, i t s suburbs and the lower v a l l e y of the Fraser R iver . 5 breast cancer. S i m i l a r i t i e s in the i l l n e s s s t o r i e s r e s u l t from the fact that p a r t i c i p a n t s had p r o v i n c i a l heal th insurance, which covers most of the cost of treatment, and they a l l used a cen t ra l i zed treatment f a c i l i t y , where they were exposed to the same i n s t i t u t i o n a l c u l t u r e . To demonstrate the r ichness and d e t a i l of the s t o r i e s I have presented in Chapter V the f u l l accounts of two women, Anne and Rebecca. These accounts provide the context , background and i n d i v i d u a l s t o r i e s of two women's experiences with breast cancer. Both s t o r i e s have some remarkable s i m i l a r i t i e s t o , and many d i f fe rences from each other and those of other p a r t i c i p a n t s . I t becomes c l e a r that breast cancer i s not jus t a medical , but a lso a s o c i a l experience. The women must deal with the cancer, which i s a threat to t h e i r l i v e s , and with the extremely d i f f i c u l t cancer treatments. As w e l l , they have to deal with continuous d is rup t ion in s o c i a l r e l a t i o n s and t h e i r day-to-day l i v e s . Chapters VI through VIII analyze the breast cancer accounts as na r ra t i ves . They include data from the f i r s t two interviews and from 30 other interviews. I s ta r t i n Chapter VI with the ana lys is of s t o r i e s of d iagnosis and treatment. These s t o r i e s are remarkably s i m i l a r throughout a l l the accounts, because of the p a r t i c i p a n t s 7 i n te rac t ion with ava i l ab le heal th serv ices (see Chapter IV) and t h e i r shared c u l t u r a l understanding of breast cancer. As noted above, in Canadian soc ie ty cancer i s considered both a death sentence and a surv ivable i l l n e s s . During the per iod of d iagnosis and treatment, the p a r t i c i p a n t s face t h e i r 6 own mor ta l i t y . They narrate t h i s experience through reconstruct ing the story of t h e i r d iagnosis of cancer: moving from fac ing death to having a disease that can be s u c c e s s f u l l y t rea ted . They construct a future f u l l of hope. The narrat ions of t h i s t r a n s i t i o n are remarkably s i m i l a r , and are shared with many of the onco log is ts , surgeons and other treatment personnel . The p a r t i c i p a n t s may learn t h i s d iscourse of hope (DelVecchio Good 1991, DelVecchio Good et a l 1990) through the process of d iagnosis and treatment. However, a f t e r the treatment per iod i s f i n i s h e d the pa r t i c ipan ts must get on with l i f e . Chapter VII explores how they rewrite t h e i r personal biographies to include breast cancer. These accounts of the breast cancer experience are more var ied than the s t o r i e s of d iagnosis and treatment. Women f i t t h e i r experiences with breast cancer into t h e i r i n d i v i d u a l l i v e s . I found that the pa r t i c ipan ts used four d i f f e r e n t c u l t u r a l schemata to construct t h e i r nar ra t ives and to account fo r the breast cancer. They include descr ip t ions of the personal r i s k of ge t t ing cancer. As the pa r t i c ipan ts reconstruct t h e i r b iographies , they incorporate the d iscourse of hope. Unl ike the story of d iagnosis and treatment, the construct ion of hope d i f f e r s s l i g h t l y with each of the schemata used. Therefore, the i l l n e s s narra t ives are constant ly evolv ing as the p a r t i c i p a n t s move beyond treatment. Chapter VIII examines the evolv ing nar ra t i ves , focusing on how breast cancer becomes a s o c i a l r e a l i t y . A diagnosis of breast cancer a f f e c t s many people besides the women who have been diagnosed, and therefore a f f e c t s s o c i a l r e l a t i o n s h i p s (Bury 1982). As w e l l , women who have had a diagnosis of breast cancer are faced with the s o c i a l , economic and p o l i t i c a l r e a l i t y of having a l i f e - t h r e a t e n i n g i l l n e s s . A l l of these r e a l i t i e s modify the evolv ing i l l n e s s nar ra t i ves . The women are faced with chal lenges to t h e i r construct ions of the future , such as the p o s s i b i l i t y of a daughter get t ing breast cancer. The i l l n e s s narra t ives are a l te red to accommodate these new chal lenges, leav ing the narra t ives fragmented and f u l l of con t rad ic t ions . Throughout these three chapters I show how the narra t ives evolve to accommodate i n d i v i d u a l circumstances. Despite the women's d iverse circumstances, the narra t ives maintain common themes, inc lud ing an understanding of the personal r i s k of get t ing cancer, construct ing a v i a b l e d iscourse of hope, repa i r ing disrupted s o c i a l r e l a t i o n s h i p s , and coming to terms with the cont rad ic t ions of breast cancer. The most s i g n i f i c a n t theme i s the l a s t , i n that the pa r t i c ipan ts are constant ly t r y i n g to rev ise t h e i r understanding of breast cancer to accommodate the ambiguit ies between construct ions of the disease as both a death sentence and a surv ivable i l l n e s s . This cont rad ic t ion may be inherent in our c u l t u r a l understanding of cancer and may be one reason cancer i s not openly d iscussed . 8 Chapter II - Development of a Theoretical Perspective This chapter develops the t h e o r e t i c a l perspect ive of the t h e s i s and descr ibes how that perspect ive i s used to analyze the data. The f i r s t sect ion explores the l i t e r a t u r e on i l l n e s s nar ra t i ves . The second explores the l i t e r a t u r e on the c u l t u r a l construct ion of cancer, focusing on breast cancer. A. Narrating Illness Recently there has been growing in te res t in the narrat ion of the i l l n e s s experience as one way of understanding i l l n e s s as l i v e d experience (Good 1994). This in te res t has developed from the convergence of two areas: research in medical anthropology on i l l n e s s as l i v e d experience and anthropological research on narra t ives and narra t ive thought. In t h i s sec t ion I review t h i s convergence and d iscuss how, in the case of t h i s t h e s i s , i n d i v i d u a l s 7 accounts of t h e i r experience with breast cancer are formulated into i l l n e s s nar ra t i ves , the in te rsub jec t ive construct ions that p o s i t i o n the s t o r i e s wi th in a s o c i a l and c u l t u r a l context. The ana lys is of these narra t ives provides ins igh t in to the c u l t u r a l construct ion of breast cancer. 1. I l l n e s s as Lived Experience The in te res t in medical anthropology in i l l n e s s as l i v e d experience developed out of a lack of understanding of the s o c i a l context of i l l n e s s and heal ing in medicine. U n t i l r ecen t ly , medical , nursing and r e h a b i l i t a t i o n research on i l l n e s s tended to 9 divorce the experience of being i l l from that of l i v i n g in the s o c i a l world. The i l l person was considered a pa t ien t . Her existence outside the c l i n i c was not considered relevant to the type of treatment she rece ived , nor to whether or not she 3 recovered from her i l l n e s s . In cases of chronic i l l n e s s e s and d i s a b i l i t i e s t h i s narrow c l i n i c a l gaze resu l ted in f a i l u r e s of treatment being blamed on the pat ient (Zola 1982). Medical anthropologists and s o c i o l o g i s t s have long been in terested in the s o c i a l experience of becoming i l l and hea l ing . For example, ear ly anthropological work explored how d i f f e r e n t groups of people explained what caused and healed disease (Turner 1968, Evans-Pr i tchard 1937). These inves t iga t ions led to an understanding of the way in which the c l a s s i f i c a t i o n of disease and the treatment of i l l n e s s r e f l e c t e d worldviews (Levi -Strauss 1963), s o c i a l r e l a t i o n s (Evans-Pri tchard 1937) and s o c i a l processes (Turner 1968). They d id not d e a l , however, with how the i l l i nd iv idua ls l i v e d or how t h e i r experience was framed by worldviews and s o c i a l processes, although l a t e r anthropologists were more l i k e l y to do so (cf . Leyton 1978, Fabrega and S i l v e r 1973) . Theore t ica l work in medical anthropology and sociology a lso contr ibuted to the understanding of i l l n e s s as l i v e d experience. A number of t h e o r e t i c a l developments were p a r t i c u l a r l y Epidemiological research has demonstrated the importance of va r iab les such as s o c i a l support to s u r v i v a l and heal th status (Berkman and Syme 1979). Several s tudies have l inked s o c i a l support to improved qua l i t y of l i f e (Bloom 1982, Bloom and Speigel 1984, Dunkel-Schetter 1984) and s u r v i v a l (Funch and Marshal l 1983, Waxier-Morrison et a l 1991) of breast cancer pa t i en ts . 10 important, such as the i n i t i a l development of the concept of the s i c k ro le by Ta lco t t Parsons (1979). Parsons conceptual ized a s i c k r o l e , with r i g h t s and ob l iga t ions that must be adhered to fo r hea l ing to occur. This concept grounds the experience of 4 . . . being s i c k f i rmly in the s o c i a l world. A c r i t i c i s m of Parsons' f u n c t i o n a l i s t s i c k ro le i s that , although i t makes sense for t ime- l imi ted acute i l l n e s s e s , i t does not account for the ro les of persons c h r o n i c a l l y i l l or d isabled (Gallagher 1979, Alexander 1982) . The second t h e o r e t i c a l development was that of a d i s t i n c t i o n between "disease" and " i l l n e s s " . This d i s t i n c t i o n allows for the e laborat ion of the s o c i a l experience of being s i c k , where "disease" i s the b i o l o g i c a l and psycholog ica l processes that have gone awry with the i n d i v i d u a l , and where " i l l n e s s " i s the s o c i a l experience and the meaning a t t r ibu ted to the disease (Kleinman, Eisenberg and Good 1978). Therefore " i l l n e s s " can be studied without chal lenging the assumption that biomedical diseases are generic and u n i v e r s a l . This d i s t i n c t i o n has enabled c l i n i c i a n s to argue for incorporat ing in to treatment plans information on p a t i e n t s ' everyday existence with the hope of humanizing medical p rac t i ce (Fabrega 1979, Kleinman 1988). Parsons' s i c k ro le has been elaborated to consider being i l l not as a r o l e , but as behaviour (Fabrega 1974). I l l n e s s behaviour i s an expansion of the more t r a d i t i o n a l s i c k r o l e , but i t s t i l l focuses on an episode of i l l n e s s and on the medical i n s t i t u t i o n s that t rea t i t (Schneider and Conrad 1983), not on the everyday experience of l i v i n g with i l l n e s s . 11 The t h i r d t h e o r e t i c a l development was Kleinman's (1980) concept of "explanatory models". Kleinman argues that when an i n d i v i d u a l becomes i l l , he or she holds an explanatory model of the i l l n e s s . These models include constructs of e t io logy (time and mode of the onset of symptoms), pathophysiology (course of the sickness) and treatment. They are used to understand the course of the i l l n e s s , to evaluate the treatment received and to produce s o c i a l meaning for the i l l n e s s . The phys ic ian a lso holds an explanatory model of the p a t i e n t ' s i l l n e s s , based on a biomedical understanding of disease and physiology. As w e l l , he/she holds a conception of what treatment should e n t a i l and what course the i l l n e s s should take. A l l of these can d i f f e r s i g n i f i c a n t l y from the conceptual izat ions developed by the pa t ien t . Kleinman (1980) proposes that teaching medical p ro fess iona ls to e l i c i t p a t i e n t s ' explanatory models w i l l improve t h e i r a b i l i t y to provide appropriate care . The use of Kleinman's explanatory models i s l i m i t e d , however, because i t was developed wi th in the context of the biomedical treatment system. The constructs included in the model, such as e t io logy and appropriate treatment, are s i m i l a r to and derived from biomedicine and do not include any concept of i l l n e s s as a s o c i a l experience. Young (1981) points to another l i m i t a t i o n . The explanatory models assume r a t i o n a l i t y and ignore the complexity of the 5 construct ion of models of i l l n e s s . As I found in t h i s 5 Hahn has developed the concept of "s ickness" which he def ines as an unwanted condi t ion of s e l f , or substant ia l threat of an unwanted condi t ion of s e l f (1995:22). This i s much broader than the concept of an explanatory model, as i t can include 12 research, an i n d i v i d u a l ' s understanding of an i l l n e s s can contain cont rad ic t ions r e s u l t i n g from the competing construct ions to which the i n d i v i d u a l i s exposed, and in addi t ion t h e i r understanding can change over time with new information and experiences (Becker 1994). Besides these t h e o r e t i c a l developments in medical anthropology and soc io logy , there has a lso been increas ing in te res t in people l i v i n g with chronic i l l n e s s e s and d i s a b i l i t y . Much of t h i s research i s in the t r a d i t i o n of symbolic in te rac t ion ism, using a grounded theory approach ( for example Charmaz 1990, Hughes 1992). This work has contr ibuted to an understanding of the organizat ion and management of d a i l y l i v i n g with chronic i l l n e s s (Strauss and Glasser 1978, Morse and Johnson 1991). In the l i f e course of a person with chronic d isease , while medical c r i s e s do occur and must be managed, the day-to-day r e a l i t y of working, mobi l i ty and maintaining s o c i a l contacts and family t i e s demands considerable time and energy (Schneider and Conrad 1983). However, the process of examining the data for common themes and categor ies (Glaser and Strauss 1967) l i m i t s the explorat ion of the v a r i a t i o n wi th in each category and the ana lys is of those cases that do not f i t the common themes and ca tegor ies . This condi t ions not normally considered medical or heal th cond i t ions . Hahn descr ibes accounts of s ickness that are much l i k e i l l n e s s nar ra t i ves . Armstrong (1990) argues that the increased i n t e r e s t i n and research on chronic i l l n e s s by s o c i a l s c i e n t i s t s has extended the socio-medical gaze. The impl ica t ion i s that s o c i a l s c i e n t i s t s doing research may be creat ing data and medical problems where none ac tua l l y e x i s t . 13 ca tegor iza t ion and thematic ana lys is "disembodies" the categor ies as i d e n t i f i e d by the researchers from the actual experiences of the ind iv idua ls who produce the data (Conrad 1990). An a l t e rna t i ve way to examine the i l l n e s s experience i s as part of a personal biography (Frank 1984, Kaufman 1988a), i l l n e s s t ra jec tory (Kaufman 1988b), therapeut ic narra t ive (Early 1982), s ickness story (Brody 1987) or i l l n e s s narra t ive (Kleinman 1988, Wil l iams 1984). I t i s important to d i s t i n g u i s h between the account or story of an i l l n e s s experience and an i l l n e s s nar ra t ive . It would be a grave er ror to conceive i l l n e s s narra t ives as the product of an i n d i v i d u a l subject , a story t o l d by an i n d i v i d u a l simply to make sense of h i s or her l i f e . . . The narra t ives were in te rsub jec t ive in a d i r e c t and obvious way: they were s t o r i e s that u t i l i z e d popular c u l t u r a l forms to descr ibe experiences shared by members of a fami ly ; the s t o r i e s were d i a l o g i c a l l y constructed, t o l d often by interwoven conversations of several persons, s t o r i e s whose re ferents were often the experiences of persons other than the nar ra tors ; and they were s t o r i e s pos i t ioned • amidst authors, nar ra tors , and audience (Good 1994:158). For s i m p l i c i t y throughout t h i s t h e s i s , I have re fer red to the i n d i v i d u a l s t o r i e s of the experience of having had a diagnosis of breast cancer as s t o r i e s or accounts. I l l n e s s narra t ives are the abstract c u l t u r a l const ruc t ions , which I draw out of the i n d i v i d u a l accounts through the ana lys is of common st ructures and themes. 2. Narrat ives and Narrat ive Thought The current in te res t in i l l n e s s narra t ives p a r a l l e l s the development in anthropology and other d i s c i p l i n e s of an in te res t 14 in narra t ives and narra t ive thought. An i l l n e s s narra t ive i s the c u l t u r a l l y appropriate story of becoming i l l , the treatment of the i l l n e s s and the recovery. Narrat ives are used as a way of th ink ing about the world and understanding what i s going on in one's l i f e . Narrat ive o f fe rs what i s perhaps our most fundamental way of understanding l i f e in t ime. Through narra t ive we t ry to make sense of how things have come to pass and how our act ions and the act ions of others have helped shape our h i s t o r y ; we t ry to understand who we are becoming by reference to where we have been (Mattingly and Garro 1994). As a form of communication between two or more people, the wr i ter and reader, the speaker and l i s t e n e r , a narra t ive has a s t ructure (Agar 1980). Labov and Waletzky (1966) examined numerous narra t ives of events and found a s i m i l a r i t y in t h e i r bas ic s t ruc ture . The s i m i l a r i t y of s t ructure was found in the sequencing of events and a r e f e r e n t i a l or evaluat ive func t ion . L i f e narra t ives share a s i m i l a r s t ruc ture , which provides coherence and an evaluat ive qua l i t y to the s t o r i e s (Meyerhoff 1982, Lawless 1993). The s t ructure of the narra t ive a s s i s t s in the communication of the s tory , provid ing a framework for i n t e r p r e t a t i o n . The s t ructure of the narra t ive i s formed by the p l o t , which shapes the story and gives i t d i r e c t i o n and intent (Brooks 1984). The p lo t provides a beginning and an end, so there i s the sense of the passage of t ime. Narrat ive i s one of the ways in which we speak, one of the large categor ies in which we th ink . P lo t i s i t s thread of design and i t s ac t ive shaping fo rce , the product of our r e f u s a l to allow temporal i ty to be meaningless, our stubborn ins is tence on making meaning in the world and in our l i v e s (Brooks 1984:323). 15 Narrat ives not only re la te events, but a lso construct the meaning of those events. They are an attempt to make the inexp l icab le understandable and meaningful through the incorporat ion of c u l t u r a l understanding shared by members of the soc ie ty (Price 1987; Garro 1992, 1994). My in te res t i s to analyze women's accounts of t h e i r experience of having a diagnosis of breast cancer to i l luminate c u l t u r a l understandings shared by members of t h e i r s o c i e t y . The women construct t h e i r accounts with a s t ructure and p l o t to help communicate t h e i r s t o r i e s . The examination of the st ructure and p l o t s provides ins igh t in to the i l l n e s s narra t ives women are us ing . 3. I l l n e s s Narrat ives In the next part of t h i s chapter I review some of the l i t e r a t u r e on i l l n e s s nar ra t i ves , to explore the themes that 7 provide ins igh t into the c u l t u r a l construct ion of breast cancer . F i r s t , I review the process of d is rup t ion and repa i r that occurs with the advent of a chronic cond i t ion . Second, I review how the concept of d is rup t ion and repa i r can be appl ied to the s e l f , the body and b i o l o g i c a l t ime. T h i r d , I examine the impact of the In t h i s t h e s i s I am interested in the narra t ion of i l l n e s s from the perspect ive of the i n d i v i d u a l who i s i l l . However, there i s a lso a developing l i t e r a t u r e on the narra t ion of i l l n e s s from the perspect ive of the care provider ( for example Matt ingly 1994, Hunt 1994), which explores many issues of c l i n i c a l p r a c t i c e . Another f a s c i n a t i n g , but as yet small l i t e r a t u r e i s that of anthropologists and s o c i o l o g i s t s wr i t ing autobiographies about t h e i r own i l l n e s s experiences (Murphy 1987, DiGiacomo 1987, and Zola 1982). 16 s o c i a l context in which i l l n e s s occurs on the construct ion of the i l l n e s s nar ra t ive . a . Disrupt ion and Repair The onset of a chronic or l i f e - t h r e a t e n i n g condi t ion introduces dramatic changes and reshapes an i n d i v i d u a l ' s conceptua l iza t ion of l i f e . The construct ion of an account of these changes i s one way of developing an understanding of what has happened and what may happen in the future . This account . . . employs the web of commonsense explanations which l i n k s the unique, somatic event with shared c u l t u r a l knowledge about i l l n e s s . These explanations serve both to evaluate therapeut ic a c t i v i t i e s and to make sense of experience. They s i tua te i l l n e s s wi th in the socioeconomic r e a l i t y which sets the parameters of therapeut ic act ion (Early 1982:1492). This process of accounting for the onset of a chronic condi t ion wi th in the construct ion of an i l l n e s s has been re fer red to as "biographic d is rup t ion" (Bury 1982) or "narrat ive reconstruct ion" (Williams 1984). Incorporat ion of the p a i n , s u f f e r i n g , l o s s , changes and d i s a b i l i t y of a ser ious condi t ion into a personal biography can be seen as a process of rewr i t ing or b iographica l work (Corbin and Strauss 1987, Kaufman 1988a, Wil l iams 1984, Becker 1994). This includes rewr i t ing of l i f e p r i o r to the i l l n e s s to account fo r the i l l n e s s , as wel l as rewr i t ing future p o s s i b i l i t i e s . b. The S e l f , the Body and Biographica l Time Within the research on i l l n e s s nar ra t i ves , the concept of d is rup t ion and repa i r has been appl ied to three areas. They are 17 the d is rup t ion and repa i r of the s e l f , the body and b iographica l time (Corbin and Strauss 1985). The f i r s t area addresses the onset of a chronic or l i f e -threatening condi t ion chal lenges the i n d i v i d u a l ' s concepts of s e l f and i d e n t i t y . This occurs through the s t r i p p i n g of autonomy by a d i s a b l i n g cond i t ion , such as the threat to l i f e of a cancer d iagnos is . Through the i l l n e s s s tory , the i n d i v i d u a l develops for the l i s t e n e r a preferred i d e n t i t y . In most cases t h i s i d e n t i t y w i l l be one in which the s e l f i s able to perform normally and in which l i f e maintains some meaning. Many of these accounts are constructed in ways that are u p l i f t i n g and o p t i m i s t i c . Robinson (1990), examining personal s t o r i e s of people with mul t ip le s c l e r o s i s , descr ibed how the majori ty were p o s i t i v e and o p t i m i s t i c . Such p o s i t i v e and o p t i m i s t i c por t raya ls of s e l f construct a l i f e separate from the i l l n e s s , where there i s hope for the future (Corbin and Strauss 1987). Kaufman (1988a) has re fer red to t h i s process as the re in te rpre ta t ion of s e l f . In t h e i r research on women's s t o r i e s of t h e i r experience with breast cancer, Mathieson and Stam (1995) descr ibed a se r i es of chal lenges to i d e n t i t y , r e s u l t i n g in a continuous reconstruct ion of i d e n t i t y . This suggests a constant chal lenge to the s e l f , cont inuing past the i n i t i a l per iod of d iagnosis and treatment. This i s understandable in a chronic i l l n e s s , where one's condi t ion may deter iora te over t ime. However, even in an 18 acute i l l n e s s , such as cancer, there are times a f te r the completion of treatment when new chal lenges to the s e l f are r a i s e d 8 . The main challenge to s e l f i s the threat of death. However, t h i s s p e c i f i c threat i s not ra ised much in the l i t e r a t u r e on i l l n e s s nar ra t i ves . S a i l l a n t (1990), i n an extended account of a woman dying of breast cancer, descr ibes the impact of mor ta l i ty on the i l l n e s s narra t ive and the b iographica l work in reconstruct ing s e l f . She found the threat of death i s a cent ra l theme of much of the work on reconstruct ing of the s e l f and the fu ture . As Yvette went from having cancer to dying from cancer, the meaning of the cancer changed, as d id the recogni t ion of the impact on her l i f e . The s e l f - d i a g n o s i s of a cancer "caught in time" [pr is a temps] corresponds to the s u r v i v a l experience and i s c o g n i t i v e l y d i s t i n c t from the diagnosis of having cancer [avoir l e cancer ] , which i s associated rather with the terminal phase. (1990:97) The threat of mor ta l i ty posed by a d iagnosis of cancer was a lso the greatest challenge to the i n d i v i d u a l construct ion of s e l f fo r the women I interviewed. The second area i s the d is rup t ion and repa i r of the body. Recent ly , anthropology has developed an in te res t in the body as paradigm, for i t i s through the body that we experience the world (Csordas 1990, 1994; Scheper-Hughes and Lock 1987). Breast cancer r e s u l t s in phys ica l changes to the body. Some women described how l o s s of the breast a f fec ted t h e i r sense of For the best example of t h i s process of rewr i t ing and re th ink ing of s e l f , see Anne's nar ra t ive in Chapter V. 19 balance, as they f e l t o f f balance or lops ided . Some descr ibed how surgery, lumpectomy or mastectomy, had a negative impact on the sexual s e n s i t i v i t y of t h e i r breast . There i s a lso a conceptual change in the i n d i v i d u a l ' s understanding of the body and i t s l i m i t s . With a d iagnosis of cancer, the i n d i v i d u a l ' s body i s seen to have been invaded by c e l l s that are out of cont ro l (Seigel 1986). The i n d i v i d u a l must come to terms with t h i s t ransgression of the body. Some women redef ined t h e i r bodies, viewing the breast and the cancer as being outside the body. The body i s a problematic e n t i t y , transformed through the nar ra t i ve . Meanings associated with an i l l n e s s are in terpreted wi th in t h i s b iographica l context , through s o c i a l r e la t ionsh ips as wel l as through the most mundane aspects of l i f e . The body i t s e l f evolves wi th in the context of t h i s biography and i s transformed in in te rac t ions with others (Becker 1994:385). However, the body cannot be separated from the s e l f (Gadow 1982, Csordas 1994, Turner 1984). The concept of s e l f i s formed through the body (Corbin and Strauss 1987). Therefore, in the i l l n e s s accounts the b iographica l work of descr ib ing the d is rup t ion of s e l f i s l inked i n e x t r i c a b l y to that of descr ib ing 9 the d is rup t ion of the body . Charmaz (1987) argues that the in tegra t ion of the body and i d e n t i t y makes a successfu l s e l f and that , through the In my personal experience of su f fe r ing with a chronic condi t ion I f ind i t d i f f i c u l t to i n t e l l e c t u a l l y d i s t i n g u i s h between body and s e l f . I have found a gap in language that r e s u l t s in an i n a b i l i t y to t a l k about the p h y s i c a l i t y of s e l f grounded in the phys ica l body. 20 reconstructed s e l f , the i n d i v i d u a l can redevelop hopes and plans for the future . This i s the case in the breast cancer accounts, where the phys ica l consequences of treatment are perceived as chal lenges to iden t i t y and s e l f . Reconstruct ion of s e l f , both body and i d e n t i t y , i s necessary to create hope for the fu ture . The l a s t of the three areas i s the d is rup t ion of b iographica l time caused by chronic i l l n e s s . As a r e s u l t of t h i s d i s r u p t i o n , the passage of time s h i f t s i n meaning. Time c a r r i e s s i g n i f i c a n t and a l te red meaning wi th in the s tory . Ind iv iduals recount the past in l i g h t of the present i l l n e s s (Garro 1992, 1994; Wil l iams 1984). This i s the case in t h i s research, as the women develop accounts of why they got breast cancer or were at r i s k of ge t t ing breast cancer. Wilson (1991) mentions that as time passes a f te r a d iagnosis of cancer, the l i k e l i h o o d of the cancer 's recurrence i s decreased. Therefore, the passage of t ime, and marking the passage of t ime, take on s i g n i f i c a n t meaning in the i l l n e s s accounts (Roth 1963, Zerubavel 1979). In descr ip t ions of t h e i r experiences with breast cancer, the pa r t i c ipan ts in t h i s research mark the passage of time as they pass through a ser ies of check ups with t h e i r phys ic ians . The more time that has passed s ince the d iagnos is , as marked by the check ups, the l e s s l i k e l y the cancer w i l l recur . Current time a lso changes i t s meaning. Corbin and Strauss (1985) re la te how, wi th in the i l l n e s s account, i nd iv idua ls t a l k of the importance of the use of t ime, and that i t not be wasted. This i s a lso a prevalent top ic in the accounts of the breast cancer experience. It i s as i f time has become more important, a l im i ted commodity. In t h i s thes is I analyze i n d i v i d u a l accounts of having had a diagnosis of breast cancer, looking for the descr ip t ions of d is rup t ion and repa i r of s e l f , body and b iographica l t ime. These descr ip t ions h i g h l i g h t some of the c u l t u r a l constructs that contr ibute to breast cancer na r ra t i ves . c . S o c i a l Context of I l l n e s s Narrat ives The three areas I have discussed above are a l l re la ted to the b iographica l work in the i n d i v i d u a l accounts. However, the construct ion of these areas deals with the i n d i v i d u a l i l l n e s s s t o r i e s as i f they were i s o l a t e d from the impact of s o c i a l r e l a t i o n s , economics, p o l i t i c s or i n s t i t u t i o n a l medicine. While I have found t h i s ana lys is i n s i g h t f u l , i t i s a lso l i m i t i n g . I be l ieve the ana lys is must go beyond the i n d i v i d u a l , to explore other fac tors that a f fec t the development of an i l l n e s s account. Because the women who have had a diagnosis of breast cancer l i v e wi th in s o c i e t y , t h e i r i l l n e s s s t o r i e s reveal more than jus t the reconstruct ion of s e l f and i d e n t i t y . They a lso inc lude , and must account f o r , the l i m i t a t i o n s the in d iv id u a ls face when l i v i n g with a chronic i l l n e s s , such as l i m i t a t i o n s of treatment (Kaufman 1988b) and c o n f l i c t i n g in terpre ta t ions of i l l n e s s (Blaxter 1983, Wardlow and Curry 1996). This sect ion of the chapter looks at the s o c i a l context: how i t a f f e c t s the development of i l l n e s s s t o r i e s and how i t i s included i n i l l n e s s nar ra t i ves . 22 The f i r s t area I wish to r a i s e i s the d is rup t ion of s o c i a l r e l a t i o n s by the advent of a chronic i l l n e s s . My contention i s that i l l n e s s , and e s p e c i a l l y chronic i l l n e s s , i s p r e c i s e l y that kind of experience where the s t ructures of everyday l i f e and the forms of knowledge which underpin them are d is rupted . Chronic i l l n e s s involves the recogni t ion of the worlds of pain and s u f f e r i n g , poss ib ly even death, which are normally only seen as d is tan t p o s s i b i l i t i e s or the p l i g h t of o thers . In a d d i t i o n , i t br ings i n d i v i d u a l s , t h e i r f a m i l i e s , and wider s o c i a l networks face to face with the character of t h e i r r e l a t i o n s h i p s in stark form, d is rupt ing normal ru les of r e c i p r o c i t y and mutual support (Bury 1982). Bury (1982) a l igns the d is rup t ion of biography by chronic i l l n e s s with a d is rup t ion of s o c i a l r e l a t i o n s . This d is rup t ion allows for the mobi l i za t ion of resources in order to deal with the d a i l y management of an i l l person's l i f e . For example, Wilson (1991) documented the extensive amount of work undertaken by husbands when t h e i r wives go through chemotherapy. The mobi l i za t ion of s o c i a l resources may come from unexpected sources, such as f r iends or neighbours who were not prev ious ly c lose (DeSantis 1979). I l l n e s s may r e s u l t in expected sources of support not l i v i n g up to the expectations of the i l l person (Bury 1982, Peters-Golden 1982), such as f r iends who do not v i s i t or 10 help during the treatment of the cancer (DeSantis 1979) . The second area of d is rup t ion i s that caused by a d e c l i n i n g a b i l i t y to work and the economic impact of the i l l n e s s . A f t e r an ana lys is of the i l l n e s s s t o r i e s of those fac ing end stage renal f a i l u r e , Gerhardt s a i d , "One may conclude that s t ructures of everyday socio-economic coping extend in to and character ize a lso S imi la r inc idents of lack of support have been found among the unemployed (Strother and Bogden 1988). 23 the l i v e s of those who are c h r o n i c a l l y s ick" (1990:1221). This i s more than jus t a readjustment of s e l f , although i d e n t i t y plays a major par t . I t i s a lso coming to terms with the economic consequences of the i l l n e s s . Feldman's (1986) research has shown that women in the workplace who have had a diagnosis of cancer sometimes face job d i s c r i m i n a t i o n . The economic consequences of chronic i l l n e s s a lso challenge the story t e l l e r ' s construct of s e l f , e s p e c i a l l y in a soc ie ty where work def ines the i n d i v i d u a l . These consequences w i l l a lso leave the i n d i v i d u a l having to cope with d e c l i n i n g resources while managing a chronic cond i t ion . The t h i r d area of d is rup t ion i s that caused by the l i m i t s of biomedicine. Kaufman (1988b), i n her work on the narra t ives of stroke v ic t ims and t h e i r c a r e - g i v e r s , found that many of the expectations for recovery were l im i ted by the l i m i t a t i o n s of medicine. The knowledge base or the resources were not ava i l ab le fo r the i n d i v i d u a l to obtain the hope for degree of recovery. The s t ructure and resources ava i l ab le through the medical system can a f f e c t both the i n d i v i d u a l s ' s t o r i e s of t h e i r i l l n e s s and the c u l t u r a l i l l n e s s narra t ives (Anderson 1986). The e f f e c t of the medical systems l i m i t s and st ructure on the generation of an i l l n e s s account i s important in the ana lys is of i l l n e s s nar ra t i ves . In Chapter VI of t h i s thes is I show how heal th serv ice de l i ve ry produced a consistent s t ruc ture , both i n the women's s t o r i e s and in the c u l t u r a l narra t ives of breast cancer. While ind iv idua ls l i v e with a chronic i l l n e s s , they are exposed to c o n f l i c t i n g in te rpre ta t ions of t h e i r i l l n e s s . 24 Mathews et a l (1994) found, through the i l l n e s s accounts of black women with advanced breast cancer in the southern United Sta tes , that the women modif ied t h e i r own models to account fo r new information and c o n f l i c t i n g in te rp re ta t ions . In some cases, when the woman's model was in c o n f l i c t with that of the care prov ider , the woman would terminate her treatment. Lay b e l i e f s about cancer and cancer treatment are widely held but not widely researched (Mathews et a l 1994; S a i l l a n t 1990; Balshem 1991, 1993). DiGiacomo (1992) has noted that popular b e l i e f s and biomedical b e l i e f s about cancer, and other i l l n e s s e s , are not as d i f f e r e n t as assumed. The study of popular b e l i e f s provides ins igh t into knowledge shared by members of s o c i e t y . Paying a t tent ion to s t o r i e s of c o n f l i c t i n g in terpre ta t ions provides ins igh t into the c u l t u r a l construct ion of breast cancer in North America. In t h i s t h e s i s I analyze the p a r t i c i p a n t s ' breast cancer s t o r i e s . I pay a t tent ion to t h e i r descr ip t ions of the d is rup t ion and necessary repa i r of l i f e , inc lud ing t a l k about s e l f , body, b iographica l t ime, s o c i a l r e l a t i o n s and s t r u c t u r a l l i m i t a t i o n s . Indiv idual accounts about l i v i n g with i l l n e s s provide ins igh t into s i m i l a r i t i e s and shared themes, while maintaining the perspect ive and issues of the i n d i v i d u a l . While each story i s unique, ana lys is of the shared themes provides ins igh t in to breast cancer narra t ives and the c u l t u r a l construct ion of breast cancer in North America (Price 1987, Garro 1992, 1994). 25 B. C u l t u r a l Construct ion of Cancer The c u l t u r a l l y constructed meaning of the a t t r i b u t i o n of r i s k , cause and appropriate treatment of breast cancer a f f e c t s the i n d i v i d u a l experience of l i v i n g with the d isease . A woman with breast cancer i s exposed to a va r i e ty of d iscourses on the causes of the disease (such as age, reproductive h i s t o r y , genet ic p r e d i s p o s i t i o n and personal i ty ) and the appropriate treatments (such as surgery, chemotherapy, rad ia t ion therapy, v i s u a l i z a t i o n , r e l a x a t i o n , and l i f e s t y l e and d ie t mod i f i ca t ions ) . Once a woman has f i n i s h e d treatment and i s disease f ree , she returns to a "normal" d a i l y rout ine as i f the disease never occurred, even though she may be asked to provide expert knowledge to others or be involved in organizat ions that focus on breast cancer. Medical anthropology, l i k e the res t of the d i s c i p l i n e , has developed an in te rpre t i ve approach (Geertz 1973, Marcus and F isher 1986, C l i f f o r d and Marcus 1986, Keesing 1987). . . . i n te res t i n the contex tua l i za t ion of content wi th in c u l t u r a l and symbolic studies was represented by a renewed in te res t in d iscourse and i n t e r p r e t a t i o n , i n the i n t e r r e l a t i o n s h i p of semantics and pragmatics, and in the r e l a t i o n s h i p of c u l t u r a l forms to s o c i a l prax is and the s o c i a l construct ion of r e a l i t y . (Good and Good 1981:178) The in te rpre t i ve approach includes the use of the s o c i a l c o n s t r u c t i o n i s t t h e o r e t i c a l perspect ive . From t h i s perspect ive , diseases are part of a human be ing 's construct ion of her or h i s r e a l i t y (Berger and Luckman 1967). This i s very d i f f e r e n t from biomedicine, where diseases are def ined as generic and u n i v e r s a l . S o c i a l construct ion in medical anthropology and socio logy i s an e laborat ion of theor ies of s o c i a l l a b e l l i n g and the 26 medica l i za t ion of everyday l i f e . S o c i a l l a b e l l i n g argues that the l abe l of having a disease and the use of that l a b e l leg i t imates the i l l n e s s and the treatment the i n d i v i d u a l receives (Waxier 1981a, 1981b). The increas ing use of medical l abe ls has resu l ted in the medica l i za t ion of everyday l i f e . More and more of our everyday l i f e i s becoming the domain of medicine and medical in tervent ion ( I l l i c h 1975). The s o c i a l c o n s t r u c t i o n i s t perspect ive allows for the examination of the s o c i a l and h i s t o r i c a l context of the crea t ion of medical l abe ls and the process of med ica l i za t ion . Much of t h i s work has examined the "author i ta t ive" discourse of biomedicine. The best known work in the f i e l d i s Foucau l t ' s (1975) ana lys is of the t r a n s i t i o n of the "gaze" of medical p r a c t i c e from the whole body to organ systems. Recent medical anthropology in the s o c i a l construct ion of heal th and i l l n e s s has included work on the representat ion of s o c i a l r e l a t i o n s in medical encounters (Armstrong 1982, Taylor 1988), the h i s t o r i c a l development of disease categor ies (Gabbay 1982, Kaufert 1988), the discourses on the treatment and cause of disease (Young 1980, Susser 1988) and the development and cont ro l of medical knowledge (Gordon 1988, Koenig 1988). Anthropologists agree that " i l l n e s s categor ies and disease are c u l t u r a l l y constructed" (Lindenbaum and Lock 1993:3). I l l n e s s categor ies and d isease , inc lud ing those of biomedicine, are part of a c u l t u r a l system. Gaines (1991) makes a d i s t i n c t i o n between c u l t u r a l l y constructed knowledge and s o c i a l l y constructed knowledge in medical anthropology. The bas is of t h i s d i s t i n c t i o n 27 i s that c u l t u r a l construct ion i s an anthropological enterpr ise based in the in te rp re t i ve t r a d i t i o n of anthropology. The c o n s t r u c t i v i s t perspect ive takes cu l ture h i s t o r y , meaning, human agency, human experience and r e s p o n s i b i l i t y as f o c a l , not ephemeral, concerns. I t seeks to locate contemporary i l l n e s s experience in continuous c u l t u r a l h i s t o r i c a l processes which serve to frame, in terpre t and give meaning to experience (Gaines 1991:236). The strength of c u l t u r a l construct ion i s that i t al lows for mul t ip le construct ions of an i l l n e s s or disease to ex is t i n d i f f e r e n t c u l t u r a l systems at any point in t ime. An example i s Kaufert and O ' N e i l ' s (1993) a r t i c l e on the d i f f e r e n t construct ions of the r i s k s involved in c h i l d b i r t h by Inui t women, epidemiologists and c l i n i c i a n s in Northern Canada. Among the i l l n e s s s t o r i e s presented in t h i s thes is are mul t ip le construct ions of breast cancer. This v a r i a t i o n allows for an understanding of how i n d i v i d u a l circumstances a f f e c t construct ion of the i l l n e s s experience. 1. Cancer Metaphors The " i l l n e s s experience i s a r t i c u l a t e d through metaphors" 11 (Kirmayer 1992:323) . Metaphors provide a way of understanding one type of experience in terms of another set of experiences (Lakoff and Johnson 1980). Therefore, i n t h i s t h e s i s much of the c u l t u r a l construct ion of breast cancer w i l l come from explor ing I t i s i n t e r e s t i n g to note that i l l n e s s e s have been used as metaphors to descr ibe changes in soc ie ty (Sontag 1978). Negative elements, such as crime, that are portrayed as growing out of cont ro l are described as being a cancer of s o c i e t y . Metaphors are a lso used in biomedicine, such as the human body being described as a machine (Osherson and AmaraSingham 1981). 28 metaphorical descr ip t ions of cancer and the cancer experience. The predominant metaphor, although not always d iscussed , i s that of a diagnosis of cancer as a death sentence (Patterson 1987). The fear of death i s the predominant feature of breast cancer s t o r i e s . I t a lso provides a s t a r t i n g point for an understanding of the generation of other metaphors used to descr ibe the cancer experience. In North America m i l i t a r y metaphors are used predominantly to descr ibe both cancer and i t s treatments (Sontag 1978). Kleinman (1980:108) points out that war metaphors have been incorporated into western biomedical d iscourse s ince the Hippocrat ic Corpus. Examples s p e c i f i c to cancer include the f a m i l i a r slogan of the Canadian Cancer Society that "Cancer can be beaten" and the dec la ra t ion of the "War on cancer" by the United States of America in the Nat ional Cancer Act of 1971 (Erwin 1987, Patterson 1987). Erwin (1985, 1987) d iscusses the e f f e c t of m i l i t a r y metaphors and terminology in cancer treatment on the construct ion of cancer. Cancer i s seen as the enemy. Doctors are the leaders in the war and o f f e r hope of v i c t o r y . Treatments are the doctors ' a rsena l . The pat ient i s the s o l d i e r , put t ing up a good f i g h t and t r y i n g not to l e t h i s / h e r fear show to family members 12 or others Therefore, the therapeut ic r i t u a l of medical m i l i t a r i z a t i o n i s a c u l t u r a l adaptation for pat ients and family members to manage the cancer experience, to 1 2 DeSantis (1979) found that the women in her study t r i e d to put on a brave face when others, e s p e c i a l l y family members, were seen as being worr ied. I found a s i m i l a r strategy descr ibed by the women I interviewed in 1987. 29 become a part of the courageous army f i g h t i n g the enemy cancer, maintaining as many normal ro les as p o s s i b l e , and becoming an " i n s p i r a t i o n " for other pat ients and people in the community. (Erwin 1987:213) Erwin (1987) descr ibes m i l i t a r i z a t i o n as a " c u l t u r a l adaptation" of the pa t ien t , family and phys ic ian for managing the cancer experience. The use of m i l i t a r y metaphors provides the p o s s i b i l i t y of v i c t o r y . This i s part of the attempt to change the meaning of cancer from a death sentence to a surv ivable disease (Gordon 1990). This change has been r e f l e c t e d in a growing l i t e r a t u r e that t a l k s about the concerns of cancer surv ivors (Dow 1990, Hoffman 1989a, Mullen 1985), as wel l as in the popular d iscourse on cancer treatment (Seigel 1986, Cousins 1989, Simmonton et a l 1978, Cunningham 1992). I t i s a lso seen in the growth of support groups and other serv ices fo r cancer surv ivors and t h e i r f a m i l i e s . a . Construct ion of a Discourse of Hope Stemming from t h i s use of m i l i t a r y metaphors, with the inherent p o s s i b i l i t y of v i c t o r y , i s an element of hope for a cure, or at l eas t for a future l i f e worth l i v i n g . This concept of hope i s not only present in the popular d iscourse on cancer, but a lso in the biomedical d iscourse . DelVecchio Good (1991, DelVecchio Good et a l 1990) found in a study of American oncology that the biomedical d iscourse on cancer contains a p a r t i c u l a r construct ion of "hope". Hope i s def ined s i m p l i s t i c a l l y as the p a t i e n t ' s p o s i t i v e a t t i tude , f i g h t i n g s p i r i t and co-operat ion with therapy. This meaning of hope i s grounded in a popular 30 construct ion of the r e l a t i o n s h i p between mind and body, where the power of thought can in f luence the funct ioning of the body, i n p a r t i c u l a r by strengthening the immune system (Cousins 1989, Cunningham 1992). When questioned about how they maintain hope in t h e i r pa t i en ts , the oncologis ts in Good's sample ind icated the importance of e s t a b l i s h i n g a partnership with t h e i r p a t i e n t s , so they can p a r t i c i p a t e f u l l y in the treatment p r o t o c o l . This partnership demanded a c e r t a i n l e v e l of phys ic ian d i s c l o s u r e , e s p e c i a l l y for those treatments that were t o x i c and could have ser ious s ide e f f e c t s . But f u l l d i s c l o s u r e , p a r t i c u l a r l y when prognosis was poor, was not always seen as therapeut ic . Although d i s c l o s u r e of information i s seen as being cent ra l to maintaining hope in the United States , t h i s i s not the case in other count r ies . In Japan (Long and Long 1982) pat ients with terminal cancer are not t o l d they have cancer, although the 13 fami l i es are t o l d the prognosis . This i s a t t r ibu ted to the Japanese construct ion of dying. Dying "wel l" i s dying q u i e t l y , whereas a death from cancer i s conceived as being prolonged and p a i n f u l (Long and Long 1982). In I ta ly (Gordon 1990, 1991; Gordon et a l 1991) as w e l l , pat ients are not t o l d they have cancer. Gordon argues (1990) that , because cancer i s seen as termina l , informing a pat ient would be tantamount to proclaiming them s o c i a l l y dead. Gordon X J i This does not mean that pat ients do not know they have cancer and are going to d i e , but rather that they are never t o l d and do not t a l k about i t (Long and Long, 1982). Kleinman (1988) re la tes a s tory of going to v i s i t a f r i e n d , a Taiwanese phys ic ian who Kleinman knew was dying of cancer. The f r i e n d , even though he was a doctor , never spoke about the cancer and acted as i f he d id not know the d iagnos is . 31 cautions that t o t a l pat ient d i s c l o s u r e of cancer d iagnosis and prognosis i s an American c u l t u r a l const ruc t ion , and in the I t a l i a n context i t would be devastat ing for the pa t ien t . In a p r o v i n c i a l c a p i t a l in southern Mexico, Hunt (1994) found that physic ians engage in an extreme form of d i s c l o s u r e , which i s extremely frank and b lunt . The physic ians c la im t h i s frank d isc losure persuades pat ients of the necessi ty of undergoing p r o h i b i t i v e l y c o s t l y and sometimes unavai lable treatments. As w e l l , the frank and au thor i ta t ive manner of d isc losure may be exaggerated because of c l a s s d i f fe rences between physic ians and pat ients and the l im i ted prest ige of the medical pro fess ion and biotechnology in t h i s p a r t i c u l a r context (DelVecchio Good et a l 1993). In Canada, as in the United States , there has been a change i n the popular and biomedical d iscourse from cancer as being a death sentence to cancer as being surv ivab le . For Yvette Tremblay, cancer as a symbol of death was remote from her experience at the t ime. By counting h e r s e l f among those persons whose cancer had been "caught in time" [pr is a temps], Yvette Tremblay became a "surv ivor" a f te r her surgery. Quite d i s t i n c t in por t raya l from the terminal phase, s u r v i v a l provides the locus for the new discourse of cancer. This new discourse i s accompanied by ce r ta in t a c t i c s in exchanges between pat ients and p r a c t i t i o n e r s (Sa i l l an t 1990:88). Changes in d iscourse promote the development of new metaphors surrounding the concepts of s u r v i v a l and hope for the fu ture . b. The Causes of Cancer The c u l t u r a l construct ion of cancer contains two other prominent themes in both the biomedical and popular d iscourses : 32 the r i s k of get t ing or dying from cancer and the causes of cancer. The study of b e l i e f s about the causes of i l l n e s s i s the bas is of ethnomedicine and has a long h i s t o r y in medical anthropology (Young 1982). However, the study of the percept ion of r i s k of ge t t ing an i l l n e s s i s much more recent . The percept ion of r i s k i s constructed wi th in a p a r t i c u l a r c u l t u r a l framework in that 1 1 . . . the c u l t u r a l processes which s e l e c t ce r ta in kinds of dangers for a t tent ion work through i n s t i t u t i o n a l procedures for a l l o c a t i n g r e s p o n s i b i l i t y " (Douglas 1985). In the i l l n e s s nar ra t i ve , the construct ion of being at r i s k i s one way of accounting for the personal experience of i l l n e s s . G i f f o r d (1986) has i d e n t i f i e d a d i s t i n c t i o n between ep idemio log ica l , c l i n i c a l medical and popular concepts of the r i s k of get t ing breast cancer. For the epidemiologist , the r i s k of ge t t ing breast cancer i s 1 1 . . . a n ob jec t ive , s c i e n t i f i c concept which descr ibes re la t ionsh ips wi th in large populat ions" (Gi f ford 1986:238). For the c l i n i c a l medical p r a c t i t i o n e r r i s k represents an uncerta inty of d iagnos is , which can be manipulated and c o n t r o l l e d through treatment of the i n d i v i d u a l or the diseased organ. G i f f o r d (1986) argues that t h i s c l i n i c a l medical concept of r i s k predominates in both the p r a c t i c e of medicine and c l i n i c a l research. This predominance has the e f f e c t of medica l i z ing r i s k and d i r e c t i n g the c l i n i c a l gaze toward the treatment of the i n d i v i d u a l rather than examining cancer r i s k in the broader h i s t o r i c a l , s o c i a l , p o l i t i c a l and environmental context . G i f f o r d (1986) i d e n t i f i e d the popular concept of the r i s k of get t ing breast cancer as grounded in the personal experience of having symptoms that may be l inked to current or future i l l hea l th . Other researchers (Dornheim 1991; Balshem 1991, 1993) have a lso found that popular concepts of the r i s k of get t ing cancer are re la ted to the i n d i v i d u a l experience of having symptoms or of knowing someone who has the d isease . In t h i s way, the r i s k of get t ing an i l l n e s s i s l inked to the understanding of what may cause a p a r t i c u l a r i l l n e s s . The causes of i l l n e s s are c u l t u r a l l y constructed and expressed metaphor ical ly . As with the construct ion of hope, explanations of the r i s k of ge t t ing cancer vary c r o s s - c u l t u r a l l y . For example, Dornheim (1991) found that i n Germany, cancer has been a t t r ibu ted c h a r a c t e r i s t i c s of t u b e r c u l o s i s , such as being " in fec t io u s" and "heredi tary" . The r e s u l t i n g behaviour i s to t r y and distance oneself from anyone s u f f e r i n g from cancer, to hide v i s i t s to the doctor fo r check ups and to not d i s c l o s e a diagnosis of cancer. In the United Sta tes , DeSantis (1979) found that , although women were concerned that t h e i r daughters would a lso get breast c a n c e r , 1 4 there was no concern about contagion or i n f e c t i o n . In a study examining middle-aged women's concept of disease in Scot land, Blaxter (1983) found that cancer was discussed without a t t r i b u t i n g a cause. She concluded that cancer was a dreaded disease and speculat ion on the cause was " . . . not only f r u i t l e s s , on the whole, but a lso uncomfortable" (Blaxter I found a s i m i l a r concern among the women I interviewed in 1987. 34 1983:67). Mathews et a l (1994) found a s i m i l a r s i t u a t i o n among black women in the southern United Sta tes , where the cause of cancer was not of much i n t e r e s t . In these cases, there i s a preference for consider ing the cause of cancer as being random. The women gave the impression of p r e f e r r i n g to be l ieve that cancer was qui te randomly caused: " i t could happen to anyone". But while they f i rmly re jected any idea of r e s p o n s i b i l i t y , part of the t e r r o r of the disease was simply that i t was mysterious (Blaxter 1983:66). Two s tud ies , in England (Cornwall 1984) and the United States (Balshem 1991, 1993) of working c l a s s communities' b e l i e f s in the causes of i l l n e s s found a d i f f e r e n t percept ion of the cause of cancer. In both studies cancer was seen as being present in a minute form in everyone, requ i r ing only some kind of t r i g g e r to s t a r t i t growing. These t r i g g e r s could be an in jury 15 or a s t r e s s f u l per iod of l i f e . The most common explanation of cancer in pub l ic theor ies however, involved a combination of in te rna l p r e d i s p o s i t i o n towards the disease and some kind of external " t r igger" or shock which p r e c i p i t a t e s onset of d isease . Many people expressed the view (at t r ibuted to cancer) that everyone has cancer and cancer pat ients are simply the unlucky ones in whom the disease i s act ivated (Cornwall 1984:158). I t i s in te res t ing to note that Cornwall found one of the t r i g g e r s noted was medical in te rvent ion; medicine was seen to be a threat to hea l th . In other s tud ies , concern was expressed that surgery in p a r t i c u l a r could contr ibute to the spread of cancer (Mathews et a l 1994, Gregg and Curry 1994). Environmental carcinogens as a cause of cancer seem to be a growing concern. Patterson (1987) noted that t h i s concern began Young (1980) has looked at the development of the concept of s t ress as a cause of i l l n e s s . 35 in the l a te 1970's. A number of studies ind ica te that people a t t r ibu te cancer to the phys ica l environment (Salzberger 1976, Dornheim 1991), but for the most part the causes of cancer are l inked more to the i n d i v i d u a l . Chavez et a l (1995) d id research on the concepts, among four d i f f e r e n t ethnic groups in the United Sta tes , of the r i s k and causes of breast and c e r v i c a l cancer and compared them with the concepts of phys ic ians . They concluded that there are mul t ip le c u l t u r a l models of r i s k . They found that Mexican and E l Salvadoran immigrants held models widely divergent from those of phys ic ians , that Anglo women's models were the c l o s e s t to those of phys ic ians , and that Chicano women's models f e l l somewhere in between. Of in te res t i s that models of the r i s k s and causes of breast cancer are embedded in a c u l t u r a l context , much l i k e those of other i l l n e s s e s . In the popular d iscourse , the r i s k of ge t t ing cancer i s often a t t r ibu ted to personal c h a r a c t e r i s t i c s such as smoking, d i e t , general heal th and persona l i ty . Through the a t t r i b u t i o n of r i s k to personal c h a r a c t e r i s t i c s , r i s k becomes i n d i v i d u a l i z e d , much as i t i s in c l i n i c a l medical p r a c t i c e . I n d i v i d u a l i z i n g the r i s k of get t ing cancer transforms a disease uncontro l lab le by medical technology into one that the i n d i v i d u a l can c o n t r o l . The cont ro l comes from the a b i l i t y of the i n d i v i d u a l to change Sontag (1978) descr ibes the d i f f e r e n t persona l i ty types that were l inked to cancer and tubercu los is in the beginning of the century. Tuberculosis was l inked with the s e n s i t i v e and a r t i s t i c person and cancer with the person who repressed t h e i r emotions and anger (see a lso Canadian Broadcasting Corporat ion 1990) . personal c h a r a c t e r i s t i c s and therefore to a l t e r the r i s k of get t ing or dying from the d isease . Balshem found that , despi te r e l a t i n g r i s k to personal c h a r a c t e r i s t i c s , i nd iv idua ls would often re fe r to the def iant person who " . . . smoked two packs of c igare t tes a day, ate nothing but l a r d and bread, never went to the doctor , and l i v e d to the age of 93" (1991:162). These same i n d i v i d u a l s were a t t r ibu ted the c h a r a c t e r i s t i c s of hard workers who kept a p o s i t i v e a t t i tude , not dwel l ing on i l l n e s s . This could be thought of as a l i n k to the biomedical theme of hope discussed e a r l i e r : the a b i l i t y to f i g h t against the odds and maintain a p o s i t i v e outlook. The concept of r i s k i s i n d i v i d u a l i z e d in both the biomedical and popular d iscourses . I n d i v i d u a l i z a t i o n may provide cancer s u f f e r e r s , t h e i r f ami l i es and medical p r a c t i t i o n e r s with the hope that cancer can be c o n t r o l l e d through in tervent ion in the personal world. However, t h i s discourse of hope a lso reduces the understanding of the s o c i a l , p o l i t i c a l and economic contexts of cancer. . . . the ro le of ' s t r e s s ' , d ie t or phys ica l environment in the incidence of card iovascular disease or cancer i s conceived of in such i n d i v i d u a l i z e d terms as ' p e r s o n a l i t y ' and ' l i f e - s t y l e ' . Such reductions not only extend the moral o r b i t of medical j u r i s d i c t i o n and s h i f t the c u l p a b i l i t y of i l l n e s s more securely upon the v i c t i m ; they a lso preclude adequate considerat ion of deeper s o c i o - c u l t u r a l processes of which ' s t r e s s ' and 'unhealthy h a b i t s ' are but symptoms. (Comaroff 1982:62-63) 37 c . Uncertainty and the Future As noted e a r l i e r , i n te res t in the surv ivors of cancer i s growing in North America. Surv iva l becomes an issue a f te r treatments have been completed. Then the person who has had a d iagnosis of cancer i s expected to continue l i f e on h i s or her own, to get back to "normal". This i s a lso the case with many other chronic i l l n e s s e s , such as a r t h r i t i s (Bury 1988, Wiener 1975). Indiv iduals develop s t ra teg ies fo r present ing themselves and t h e i r l i v e s as normal, or back to normal. However, a f t e r a d iagnosis of cancer, l i f e i s never r e a l l y the same as before , because of the chance of a recurrence of the cancer which r e s u l t s in uncerta inty about the fu ture . Comaroff and Maguire (1981) descr ibed parents ' anxiety each time t h e i r ch i ld ren with leukaemia went in fo r t e s t s . They f e l t hopeless and f r ightened. The future was uncer ta in . The uncerta inty created problems, such as an i n a b i l i t y to plan and fee l ings of v u l n e r a b i l i t y , as wel l as opportuni t ies to refocus p r i o r i t i e s and change the d i r e c t i o n of one's l i f e (Quigley 1989). Oncologists deal with the uncerta inty of cancer by focusing the p a t i e n t s ' concerns on the present rather than the future (DelVecchio Good et a l 1994). They do t h i s through a res t ruc tur ing of t ime. In t h i s t h e s i s the p a r t i c i p a n t s rest ructured or rewrote personal time in a s i m i l a r way through the use of metaphors about the importance of the present compared to the unknown of the future . Much of the popular l i t e r a t u r e on surv iv ing a d iagnosis of breast cancer cons is ts of s t o r i e s about making the best of t h i s 38 uncer ta inty , making changes in one's l i f e or jus t l i v i n g l i f e to the f u l l e s t (Ralph 1994, R o l l i n 1976, Wil l iams 1993, Crowie 1994, MacPhee 1994). This d iscourse i s one of c rea t ing hope for the fu ture . I t i s o p t i m i s t i c and looking to a future f u l l of l i f e . The model of hope for the future i s constructed wi th in a p a r t i c u l a r c u l t u r a l context , and one would expect that , as with the models of r i s k , there would be mul t ip le models. C. Conclusion In t h i s t h e s i s I analyze the breast cancer s t o r i e s presented wi th in interviews of women who have had a diagnosis of breast cancer. Although each i n d i v i d u a l ' s story i s unique, common structures and themes run throughout.(Garro 1994). The c u l t u r a l construct ion of cancer i s represented in these commonalities. In the ana lys is I look for these commonalities in four main areas. The f i r s t i s the narra t ive s t ructure of the s tory . I am most in terested in the case where the narra t ive s t ructure elaborates a shared understanding about the experience of having 17 had a diagnosis of breast cancer . This occurs in the e laborat ion of the story of d iagnosis and treatment in Chapter VI . The second area i s the use of the concept of d i s r u p t i o n , repa i r and b iographica l work (Williams 1984, Bury 1982) to think about the important themes presented in the breast cancer accounts. I look for the reconstruct ion of s e l f through the I do not analyze the narra t ives as speech a c t s , but rather analyze the content of the na r ra t i ves . 39 reconstruct ion of body and i d e n t i t y and the reconstruct ion of b iographica l t ime. I a lso look at the s o c i a l context in which the s t o r y t e l l e r e x i s t s and how t h i s a f fec ts construct ion of the s tory . In p a r t i c u l a r , I examine the d is rup t ion in s o c i a l r e l a t i o n s h i p s caused by the i l l n e s s (Bury 1982) and the l i m i t a t i o n s imposed by such factors as economics and biomedicine on the a b i l i t y to reconstruct s e l f and time (Kaufman 1988b). The t h i r d area of focus i s the metaphors used in the s t o r i e s . Much b iographica l reconstruct ion i s done through the use of metaphors. This i s p a r t i c u l a r l y re levant with cancer. Of p a r t i c u l a r in te res t i s the use of the metaphors of cancer as a death sentence and "cancer can be beaten", and whether t h i s inherent cont rad ic t ion i s reso lved . The f i n a l area i s how women who have had a diagnosis of breast cancer construct models of hope for the future , r i s k and cause, and how they deal with uncer ta inty . I am p a r t i c u l a r l y in terested in how the women l i n k these concepts together to form s t o r i e s that have some coherence. The ana lys is of common narra t ive s t ruc tures , metaphors and themes in the s t o r i e s provides ins igh t in to the s t ructure and content of breast cancer nar ra t i ves . These narra t ives are presented in t h i s t h e s i s . Chapter III - Research Methods 40 Researching the experience of women l i v i n g with a d iagnosis of breast cancer I interviewed 32 women who have completed treatment for a primary diagnosis of breast cancer. There are two sets of data. The f i r s t set contains 29 open-ended interviews done with women who had completed treatment for the disease at l eas t one year a f te r d iagnosis and who had no fur ther 18 evidence of the disease (Waxier-Morrison et a l n.d.) . These p a r t i c i p a n t s had been diagnosed with cancer but have a good prognosis , Stage I or II d isease (see Chapter IV). This sample was l im i ted to women who l i v e d in the Lower 19 Mainland . The 29 pa r t i c ipan ts came from a s t r a t i f i e d random sample se lected from the records of the B r i t i s h Columbia Cancer . 20 Agency, Vancouver C l i n i c . The Vancouver C l i n i c t rea ts a l l women in mainland B r i t i s h Columbia who require rad ia t ion treatment, as wel l as many who do not. The sample was s t r a t i f i e d by time passed s ince completing treatment. Nine women were se lected from those who had completed These interviews were done as part of "Cancer Surv ivorsh ip: The Psychosocial Experiences in Breast Cancer" conducted by Dr. N. Waxier-Morrison (p r inc ipa l i n v e s t i g a t o r ) , Dr. T . G . H is lop and Mr. R. Do l l (co- invest igators) and funded by the B r i t i s h Columbia Health Research Foundation Grant No. 170(92-1). I was the pro ject coordinator . 19 The Lower Mainland includes the c i t y of Vancouver, i t s suburbs, and the lower v a l l e y of the Fraser R iver . This was done to reduce interviewer t r a v e l costs and t ime. 20 Th i r ty interviews were completed. However one p a r t i c i p a n t dec l ined to have the interview taped and s ince the interview was by the other interviewer, I d id not include i t i n t h i s a n a l y s i s . 41 treatment up to one year before s e l e c t i o n , ten from those who had completed treatment two to three years before , and ten from those who had completed treatment four to f i v e years before . The sample was a lso s t r a t i f i e d by age, with 13 women being under age . 21 50, and 16 over age 50 at the time of d iagnosis . The procedure for contact ing pa r t i c ipan ts began with the i d e n t i f i c a t i o n of women e l i g i b l e to p a r t i c i p a t e from a review of charts at the B r i t i s h Columbia Cancer Agency. F i f t y - o n e women were i d e n t i f i e d . A l e t t e r was sent to each woman's doctor to inform him/her about the research and to check that the woman was s t i l l d isease 22 f ree . Doctors i d e n t i f i e d three women who have had a recurrence of t h e i r cancer. These women were excluded from the sample. Then a l e t t e r was sent to the remaining women, descr ib ing the pro ject and inc lud ing a consent form they could return i f they wanted to p a r t i c i p a t e . Women who were not heard from received fol low-up phone c a l l s . Three women had moved and could not be located . Fourteen women chose not to p a r t i c i p a t e in the research. Some of the reasons for not wanting to p a r t i c i p a t e included being This sample i s s t i l l s l i g h t l y biased toward those women under 50. There are more cases of breast cancer in women over 50 than under 50. Estimated new cases of breast cancer in Canada in 1995 for women 49 and under are 4,130 and for women 50 and over i s 13,600 (National Cancer Ins t i tu te of Canada 1995). In t h i s research i t was eas ie r to f i n d and r e c r u i t younger women than older women. 22 This i s a standard procedure with research protocols at the B r i t i s h Columbia Cancer Agency (His lop, personal communication). 42 unwel l , being too busy or not wanting to t a l k about t h e i r experience. As ha l f the women in the sample were over the age of 50 and had mul t ip le heal th problems, i t was expected that some would choose not to p a r t i c i p a t e because of i l l hea l th , although a number of the p a r t i c i p a n t s in the research d id have heal th problems unrelated to the cancer d iagnos is . Many of the pa r t i c ipan ts sa id they d id not t a l k much about t h e i r d iagnosis any more. Gett ing over the diagnosis and ge t t ing on with l i f e was an important part of hea l ing . This may have resu l ted in some women choosing not to p a r t i c i p a t e . I t was to my advantage to be able to use a random sample of p a r t i c i p a n t s , as I was able to interview women who had a broader range of experiences than i f I had had to sample women in another way, such as request ing p a r t i c i p a t i o n through a newsletter or support group. Many of the pa r t i c ipan ts ind icated they d id not p a r t i c i p a t e in support groups or subscribe to newsletters from var ious organizat ions deal ing with breast cancer. I would have had no way of reaching them to p a r t i c i p a t e in t h i s research ,23 pro ject This research focused on the construct ion of cancer in mainstream cul ture and d id not focus on ethnic m i n o r i t i e s . The majori ty of the p a r t i c i p a n t s came from European backgrounds. In a study of t e s t i c u l a r cancer, p a r t i c i p a n t s were rec ru i ted through a "snowball technique", s t a r t i n g with pat ients from o n c o l o g i s t s ' o f f i c e s and from announcements and advertisements (Brodsky 1995). The pa r t i c ipan ts in t h i s study used predominantly what I have re fer red to as cancer as a point of change schema, and showed much l ess v a r i a t i o n . 43 There was one Asian and another from La t in America. A l s o , the majori ty were from the middle socio-economic c l a s s , with a few being from a higher socio-economic c l a s s . I t i s important to do research on mainstream c u l t u r a l perceptions before going on to study other ethnic groups. Otherwise, biomedical constructs of disease are used as a point of comparison and almost given a t ru th va lue , and popular constructs are ignored (DiGiacomo 1992). I was one of two interv iewers. I conducted 2 0 of the 29 interv iews, and the other interviewer d id the r e s t . The majori ty of the interviews took place in the p a r t i c i p a n t s ' homes. Those p a r t i c i p a n t s who i n v i t e d us into t h e i r homes t reated us l i k e guests, o f f e r i n g tea , cof fee and something to eat . Four interviews were done at the Vancouver C l i n i c of the B r i t i s h Columbia Cancer Agency. Most often we were able to use the room in the Family and Pat ient Services Department where support group meetings are h e l d , which was in a d i f f e r e n t area from the examination and treatment rooms. The interviews were open-ended, leav ing the p a r t i c i p a n t s to t a l k about t h e i r experiences. The interviewers usua l ly s tar ted by asking, "When were you diagnosed with breast cancer? Could you t e l l me what happened?" This provided the opportunity for the pa r t i c ipan ts to t e l l t h e i r s t o r i e s of d iagnosis and treatment. A f te r t e l l i n g t h e i r s t o r i e s , the p a r t i c i p a n t s were encouraged to t a l k about what had happened s ince they had completed treatment. A number of top ics were introduced by the interviewer i f they d id not come up during the conversat ion (see 44 Appendix I ) , inc lud ing r e l a t i o n s with family and f r i e n d s , job experiences, r e l a t i o n s with heal th p r o f e s s i o n a l s , personal concerns and hea l th . Any other subjects brought up by the p a r t i c i p a n t s were a lso explored. The interviews las ted anywhere from one hour to wel l over two hours. They were audio-taped and then t ranscr ibed . I had access to the audio- tapes, t r a n s c r i p t s and f i e ldnotes from a l l 29 interviews for t h i s a n a l y s i s . The second set of data cons is ts of three in-depth case 24 studies recru i ted through a post-treatment support group run by Pat ient and Family Services at the B r i t i s h Columbia Cancer Agency 2 5 for women who have had a diagnosis of breast cancer . I d id a l l of these interviews. Sue Cannon (1989) wrote about the moral dilemmas of interviewing women with breast cancer. Unl ike the p a r t i c i p a n t s in Cannon's work, most of these p a r t i c i p a n t s had a good prognosis and were r e l a t i v e l y wel l at the time of the study. We were not faced with an impending death. As w e l l , the contact per iod was much shorter and r e l a t i o n s h i p s d id not become as c l o s e . However, the question remains about the po ten t ia l b ias of interviewing women, e s p e c i a l l y when they may see the interviewer as coming from an i n s t i t u t e from which they have received care 24 O r i g i n a l l y there were four case s t u d i e s . However, one p a r t i c i p a n t withdrew from p a r t i c i p a t i o n due to heal th problems r e s u l t i n g from her treatment fo r breast cancer. 25 . • • . I obtained permission from the B r i t i s h Columbia Cancer Agency to conduct t h i s research. L i z Dohan a s s i s t e d me with the recruitment by handing out l e t t e r s at the support group (see Appendix I I I ) . 45 and from which they may need care in the fu ture . In some cases the p a r t i c i p a n t s , such as T r i s h a , f r e e l y c r i t i c i z e d the treatment they had rece ived , but the majori ty had nothing but p ra ise for the B r i t i s h Columbia Cancer Agency. These three in-depth case studies las ted from four to seven hours each, and each included at l eas t two repeat interv iews. The interviews were done about a month apart . I d id the interviews with Anne and Tr isha at t h e i r homes, and the interviews with Rebecca in my home. A l l of the interviews were audio-taped. I l i s t e n e d to the tapes of each interview p r i o r to the fo l lowing interview and i d e n t i f i e d areas I wanted to d iscuss fur ther . The p a r t i c i p a n t s a l l received copies of the tapes of t h e i r interv iews. They a lso proofread the t r a n s c r i p t s of the excerpts from t h e i r interviews included in t h i s t h e s i s . I included the in-depth case studies to provide a depth of information not ava i l ab le in the shorter interv iews. As they were done a f te r the shorter interv iews, I was a lso able to explore fur ther some of the concepts developing from the shorter interv iews. Only two of the case s tud ies , Anne and Rebecca, have been included in f u l l , as Anne and T r i s h a ' s s t o r i e s were s i m i l a r . Another advantage of the in-depth case studies was that by doing mul t ip le interviews with three i n d i v i d u a l s , I obtained a perspect ive on how t h e i r s t o r i e s changed over t ime. The concept of an evolv ing account i s very important in the understanding of breast cancer narra t ives and i s probably best exempli f ied by Anne. 46 The ana lys is of a l l the interviews was done through a process of reading and immersion in the interv iews, drawing out the sect ions where p a r t i c i p a n t s ta lked about t h e i r experiences with breast cancer or cancer in genera l . Then I examined these sect ions of the i n d i v i d u a l accounts for common themes and s t ruc tures . From these themes and st ructures I constructed the breast cancer narra t ives presented in t h i s t h e s i s . I analyzed the interviews by drawing out narra t ives rather than ca tegor iz ing and/or quant i fy ing themes. This ana lys is has severa l s t rengths. It avoids the f i x i n g of meaning in the development of normative categor ies (Almeida-Fi lho 1991, Kaufert 1988, Rubinstein and P e r l o f f 1986). It al lows i d e n t i f i c a t i o n of mul t ip le schemata wi th in the nar ra t i ves . It shows how the breast cancer narra t ives change with the passage of t ime. Examining the i n d i v i d u a l accounts as they developed in the interview a lso h igh l ighted the incons is tenc ies and cont rad ic t ions that are in tegra l parts of i l l n e s s nar ra t i ves . During the interv iews, pa r t i c ipan ts mentioned sources of information on breast cancer other than t h e i r phys ic ians . I t r i e d to locate as many as I cou ld . They included books (Seigel 1986, 1990; Simmonton et a l 1978; Love 1990; Sontag 1978) and videos ( J i l l i a n 1986, Landsbury Company 1988). Many of the pa r t i c ipan ts ind icated they read a r t i c l e s from newspapers and magazines, as wel l as popular l i t e r a t u r e on breast cancer, but d id not spec i fy the exact mater ia l . Therefore, I c o l l e c t e d and examined some of the popular l i t e r a t u r e on breast cancer. I c o l l e c t e d pamphlets and newspaper and magazine a r t i c l e s from a 47 va r i e ty of sources, such as B r i t i s h Columbia Cancer Agency, information f a i r s , l o c a l supermarkets and newspapers. I a lso read a number of i n d i v i d u a l accounts of breast cancer. A s i g n i f i c a n t amount of popular l i t e r a t u r e i s ava i l ab le on breast cancer s p e c i f i c a l l y and on cancer genera l ly . It ranges from ideas about heal ing and treatment (for example Se ige l 198 6, Simmonton et a l 1978) to s t o r i e s of personal experiences with breast cancer ( for example Wadler 1992, R o l l i n 1976). I a lso t r i e d to keep abreast of the issues that arose during the per iod of the research. These included the d iscuss ions around a genet ic bas is of breast cancer (Canadian Breast Cancer Research I n i t i a t i v e 1994) and the controversy surrounding the r e s u l t s of the Nat ional Breast Screening Study (Bryant 1993; Caines et a l 1993; M i l l e r 1993a, 1993b). I a lso d id p a r t i c i p a n t observation at a number of pub l i c fund - ra is ing events for breast cancer in the Lower Mainland. During t h i s per iod many of these events were put on by the newly formed Canadian Breast Cancer Foundation - B r i t i s h Columbia 2 6 Chapter . Events included informat ional meetings, fund - ra is ing breakfasts and fund- ra is ing runs. While t h i s research was in progress, a number of l o c a l (Ralph 1994, McPhee 1994, Crowie 1994) and other Canadian (Batt 1994, Wil l iams 1993) s t o r i e s of women's experiences with breast cancer were publ ished. As w e l l , an informat ional text for pat ients was publ ished by l o c a l physic ians (O l ivot to , Gelmon and In 1994 I became a member of the S c i e n t i f i c Advisory Committee of the Canadian Breast Cancer Foundation - B r i t i s h Columbia Chapter. 48 Kuusk 1995) . A number of l i m i t a t i o n s are inherent in the methods used in t h i s study, due to a v a i l a b i l i t y of data and resources. As there were no funds for t r a n s l a t i o n or t r a v e l , I spoke only to women who were comfortable and conf ident in Eng l ish and who l i v e d in the Lower Mainland. The s t o r i e s of those women who do not speak Eng l ish and l i v e outside the Lower Mainland, e s p e c i a l l y the i n t e r i o r and northern B r i t i s h Columbia, would be wel l worth consider ing for future research. Chapter IV - Background Information 49 This chapter reviews some background informat ion, to a s s i s t the reader in p lac ing the interviews in context . This includes a review of some of the s t a t i s t i c s on breast cancer, an explanation of the staging of breast cancer tumours, and information on the heal th care serv ices ava i l ab le to women in the Lower Mainland of B r i t i s h Columbia who have had a diagnosis of breast cancer. A. Breast Cancer Statistics These are the most bas ic s t a t i s t i c s , jus t to provide the reader with an idea of the prevalence of breast cancer in B r i t i s h Columbia. In 1995 the Nat ional Cancer Ins t i tu te of Canada (1995) estimated that in that year, 17,700 new cases of breast cancer would be diagnosed in Canada, and that 5,400 women would d ie from the d isease . For B r i t i s h Columbia the estimates were 2,600 new cases and 630 deaths (National Ins t i tu te of Canada 1995). The r e l a t i v e breast cancer s u r v i v a l rate a f te r f i v e years i s 73%. This i s much higher than lung cancer at 20%, but lower than uter ine cancer at 81% (National Cancer Ins t i tu te of Canada 1995). Table I shows the estimates of new cases and deaths for 1995 in Canada by age. A large number of women are diagnosed with breast cancer each year, and a large number of women d ie from breast cancer each year . Breast cancer i s most common among women who are over the age of 50. 50 Table I - Estimated New Cases and Deaths for Breast Cancer by Age in Canada in 1995 Age Group 0 - 1 9 20 - 29 30 - 39 40 - 49 50 - 59 60 - 69 70 - 79 80 + New Cases l e s s than 5 90 940 3100 3200 4200 4100 2100 Deaths l ess than 5 15 210 580 850 1200 1350 1150 Source: Nat ional Cancer Ins t i tu te of Canada 1995:40 Although breast cancer i s the cause of death for many women, the f i v e year s u r v i v a l rate i s s i g n i f i c a n t . Therefore, when researching women's experience with breast cancer, i t i s important to recognize the po ten t ia l for v a r i a t i o n in experience due to age and length of time s ince d iagnos is . I was c a r e f u l i n s e l e c t i n g the s t a t i s t i c s I would present in t h i s t h e s i s , because in doing the f ieldwork I found that s t a t i s t i c s are part of the c u l t u r a l construct ion of breast cancer. For example, s t a t i s t i c s are used to state how ser ious an i l l n e s s breast cancer i s . This i s usua l ly followed by a p lea for donations to fur ther research or some other good cause. This i s an example of q u a n t i f i c a t i o n r h e t o r i c , where quant i fy ing 51 comparisons heighten the contrast o f , i n t h i s case breast cancer, to other problems (Potter et a l 1991). One s t a t i s t i c commonly used i s that one in nine women w i l l get breast cancer in t h e i r l i f e t i m e , which i s f r igh ten ing . However, t h i s s t a t i s t i c does not account for the changing r i s k over a l i f e t i m e . Older women are at higher r i s k of ge t t ing breast cancer than younger women, so the r i s k for a young woman i s much lower than one in n ine. A second example of a s t a t i s t i c that i s part of the c u l t u r a l construct ion of breast cancer i s the c la im that breast cancer i s the number one k i l l e r of women between the ages of 35 and 50, again f r igh ten ing . However, there are few causes of death fo r women in t h i s age range. It i s s t i l l the o lder women, those over 50, who bear the brunt of the disease (see Table I ) . Portraying the disease as being of concern to women in the prime of l i f e , rather than older women, i s a good strategy for r a i s i n g awareness and funds. Indiv idual women incorporated s t a t i s t i c s into t h e i r s t o r i e s , 27 or in one case had s t a t i s t i c s quoted to them , to expla in t h e i r s i tua t ions or to r a i s e questions about the fu ture . Commonly used s t a t i s t i c s are the s i z e of the tumour i t s e l f , and that a f te r f i v e years without recurrence the breast cancer i s considered to have gone. The numerical representat ion of breast cancer in the narra t ives i s extremely i n t e r e s t i n g . I t leads me to wonder jus t Angela, who was 2 6 when diagnosed, was t o l d many times how unusual i t was for someone her age to have breast cancer, comments she found f r u s t r a t i n g . This case w i l l be discussed in fur ther d e t a i l l a t e r . 52 how our s t a t i s t i c a l representat ion of disease contr ibutes to i t s c u l t u r a l const ruc t ion . 2 8 B. Staging of Breast Cancer Tumours During the interviews many of the pa r t i c ipan ts ind icated what "stage" t h e i r tumour was. Staging of tumours i s done by patho log is ts and oncologis ts to estimate the progress of the d isease , i t s seriousness and the chances of s u r v i v a l . The estimates are a l l approximations and each case w i l l be d i f f e r e n t (O l ivot to , Gelmon and Kuusk 1995). However, the p a r t i c i p a n t s used the staging of t h e i r disease in t h e i r s t o r i e s as an i n d i c a t i o n of i t s ser iousness. The information presented here i s from O l i v o t t o , Gelmon and Kuusk (1995), and O l i vo t to (personal communication) Stage I Tumour i s l ess than two centimeters, no metastases and no cancer in the lymph nodes. Treatment i s usua l ly l o c a l , inc lud ing mastectomy or lumpectomy and r a d i a t i o n . Average f i v e - y e a r s u r v i v a l i s 80% to 90%. There i s a second staging system c a l l e d the TNM. This system uses: 1) Tumour s i z e and spread (T), 2) lymph node involvement (N), and 3) the presence or absence of metastases (M) (Ol ivot to et a l , 1995). None of the pa r t i c ipan ts mentioned t h i s staging system in the interviews so I w i l l not review i t i n d e t a i l . 53 Stage II Tumour i s two-f ive centimeters, but not invo lv ing sk in or chest w a l l . Some lymph nodes may be involved, but they are moveable. No metastases. Treatment i s again usua l ly l o c a l , inc lud ing mastectomy or lumpectomy and r a d i a t i o n , but a lso includes adjuvant therapy such as chemotherapy and hormonal therapy. Average f i v e year s u r v i v a l i s 50% to 70%. Stage III Tumour i s l o c a l but advanced, and e i ther i t i s f ixed to the sk in or chest w a l l , or the lymph nodes involved are "attached" to s t ructures in the a x i l l a . No metastases past the c l a v i c l e . Treatment includes high-dose chemotherapy, rad ia t ion therapy and hormonal therapy p r i o r to surgery, i f surgery i s an opt ion . Average f i v e - y e a r s u r v i v a l i s 30% to 60%. Stage IV Cancer has spread beyond the breast and a x i l l a to lymph nodes above the c l a v i c l e or to d is tant organs. Treatment i s p a l l i a t i v e care to improve qua l i t y of l i f e . Average f i v e - y e a r s u r v i v a l 5% to 20%. The staging system provides a simple construct ion of breast cancer. F i r s t , the la rger the tumour and the fur ther the spread, the worse the d isease . Second, the greater the spread, the more aggressive the treatment (un t i l stage IV) and the lower the C l a v i c l e i s the co l la rbone . 54 chances of s u r v i v a l . In t h e i r s t o r i e s , the pa r t i c ipan ts l inked the s i z e and spread of the tumours and t h e i r type of treatment to s u r v i v a l . They incorporated t h i s into t h e i r construct ion of cancer as a way of evaluat ing the seriousness of t h e i r p a r t i c u l a r cancer. C. Health Services Available to Women Who Have Had a Diagnosis of Breast Cancer Two main fac tors which contr ibute to the p a r t i c i p a n t s ' experiences and which may be d i f f e r e n t in B r i t i s h Columbia than in other j u r i s d i c t i o n s . The f i r s t i s the a v a i l a b i l i t y of a p r o v i n c i a l heal th insurance system. The second i s the cen t ra l i zed de l i ve ry of treatment fo r cancer. These two fac tors contr ibute to the development of an i n s t i t u t i o n a l cu l ture to which a l l the p a r t i c i p a n t s were exposed during t h e i r d iagnosis and treatment. As a r e s u l t , the sub-narrat ives deal ing with the per iod of d iagnosis and treatment have l i t t l e v a r i a t i o n . This w i l l be described in Chapter VI . Nat ional heal th insurance i s ava i l ab le throughout a l l of Canada, but the insurance plans are administered and subsid ized 30 by the p r o v i n c i a l governments . In B r i t i s h Columbia the insurance plan i s c a l l e d the Medical Services Plan (MSP). MSP i s ava i l ab le to a l l res idents of the province for $36 per month once residency in the province has been es tab l i shed . Many employers pay part of or a l l of t h i s fee as part of an employment cont rac t . The core serv ices covered by the p r o v i n c i a l insurance plans are mandated by the federa l government under the Canada Health A c t , with some minor v a r i a t i o n s . 55 Otherwise, each i n d i v i d u a l i s responsible fo r r e g i s t e r i n g in and paying for MSP. Those people on s o c i a l ass is tance are often covered as part of that ass is tance . While there i s the p o s s i b i l i t y of someone not being covered by MSP, t h i s can usua l ly be deal t with by having the i n d i v i d u a l pay the fees a f te r the f a c t . MSP covers the cost of a l l phys ic ian v i s i t s , treatment and laboratory s e r v i c e s , and h o s p i t a l c o s t s . Some s e r v i c e s , such as physiotherapy, have l im i ted coverage and require a small "user fee" . Therefore, for a woman in the province who i s covered by MSP, the f i n a n c i a l burden of being diagnosed with breast cancer i s re la ted more to l o s t wages rather than to medical expenses. The impact of medical costs on the experience i s very d i f f e r e n t from that in the United Sta tes , where the concern about treatment cost i s a major part of the experience. The B r i t i s h Columbia Cancer Agency i s a treatment, research and teaching f a c i l i t y . I t i s a heal th care f a c i l i t y independent of any other h o s p i t a l i n the province. A l l women who l i v e in . 31 . . mainland B r i t i s h Columbia and who require rad ia t ion treatment are given that treatment at the Vancouver C l i n i c of the B r i t i s h Columbia Cancer Agency. Many such women who do not require rad ia t ion are s t i l l re fer red to the Vancouver C l i n i c fo r assessment and consu l ta t ion . The mainland of the province i s a l l of B r i t i s h Columbia except for Vancouver Is land. Therefore some people have to t r a v e l a long way for treatment. Current ly the B r i t i s h Columbia Cancer Agency i s in the process of opening up treatment f a c i l i t i e s in the i n t e r i o r of the province to deal with t h i s problem. 56 Other pat ient serv ices are a lso ava i l ab le at the B r i t i s h Columbia Cancer Agency, inc lud ing access to i t s l i b r a r y and pat ient counse l l ing and support s e r v i c e s . There are two formal support groups for women who have had a diagnosis of breast cancer, one for those going through treatment, and one for those who have completed treatment. Some of the p a r t i c i p a n t s used these support s e r v i c e s . The existence of a c e n t r a l i z e d treatment f a c i l i t y and the fac t that sampling for t h i s study was done through t h i s f a c i l i t y creates a s i m i l a r i t y of experience that would not be as common elsewhere. I have provided only minimal information about the heal th serv ices ava i lab le to women who have had a diagnosis of breast cancer. However, i n the long narra t ives in Chapter V, the impact of p r o v i n c i a l heal th insurance and a c e n t r a l i z e d treatment f a c i l i t y on the experience becomes evident . 57 Chapter V - Narratives of Living With Having Had a Diagnosis of Breast Cancer I l l n e s s narra t ives are represented in the accounts of i n d i v i d u a l experiences with i l l n e s s . To ground the reader in the experiences of the pa r t i c ipan t I am present ing two in-depth case 32 • . . . s tudies . Each i s an i n d i v i d u a l ' s account, and i s unique in many respects . However both have a common s t ruc ture . Both a lso have aspects that are shared with other p a r t i c i p a n t ' s s t o r i e s . L ike the majori ty of the p a r t i c i p a n t s , the t e l l e r s of both these accounts s t a r t t h e i r s t o r i e s by t e l l i n g how t h e i r cancer was detected, diagnosed and t rea ted . The remainder of the story i s an account of the impact the cancer has had on t h e i r l i v e s and the l i v e s of others . This sec t ion of the story i s t h e i r way of making the cancer meaningful through the rewr i t ing of t h e i r personal biography to account fo r and accommodate the cancer. Each p a r t i c i p a n t does t h i s d i f f e r e n t l y . Both t a l k about the future and t r y to draw t h e i r cancer story to a conc lus ion . It i s the uncerta inty of the future , the p o s s i b i l i t y of recurrence, that makes t h i s very d i f f i c u l t . Through the construct ion of t h e i r personal accounts the pa r t i c ipan ts invoke a va r i e ty of breast cancer na r ra t i ves . These narra t ives inf luence the presentat ion of s t ructure of the s tory . The case studies have been edi ted to cover mater ia l of i n te res t for t h i s t h e s i s . They contain both paraphrasing and d i r e c t quotes. The quotes have been edi ted to make them readable. For t h i s thes is I am more in terested in the content of the mater ia l than in a l i n g u i s t i c a n a l y s i s . 58 As wel l they provide a bas is for the s e l e c t i o n of content to present in the account. A. Anne At the beginning of the story of her d iagnosis and treatment Anne descr ibes how the diagnosis d isrupted her l i f e . She goes on to descr ibe how she reconstructed her sense of i d e n t i t y and body through separat ing the cancer from h e r s e l f and descr ib ing her treatments as s u c c e s s f u l . She a lso descr ibes in great d e t a i l the change in her construct ion of b iographica l time as she went through treatment and the post-treatment per iod . As Anne t a l k s about the cancer in her l i f e she develops an account of what may have caused her cancer, a personal r i s k p r o f i l e . She a lso t a l k s at length about the impact the cancer has had on her l i f e , and how i t has provided her with an opportunity to reevaluate her l i f e and make changes. Anne's cancer story i s , i n a sense, incomplete. She ta lks about the future and the r o l e , she hopes a minimal r o l e , the cancer w i l l p lay . However, throughout the nar ra t ive leading up to t h i s point she descr ibes many chal lenges to her developing understanding of breast cancer, such as having to deal with the fear of recurrence at the end of her treatment and her f a m i l y ' s react ions to her cancer d iagnos is . She a r t i c u l a t e l y descr ibes the ambiguity of breast cancer. Anne i s a 35 year o ld p r o f e s s i o n a l . She i s a heal th p ro fess iona l and i s a r t i c u l a t e in the use of medical terminology. She had been diagnosed with breast cancer about e ight months 59 before the f i r s t interview. She p a r t i c i p a t e d in four interviews in A p r i l , May, June and August 1994. A l l the interviews were done at her k i tchen t a b l e , although in two d i f f e r e n t apartments. The f i r s t and second interviews were done in an apartment that she was sharing with a f r i e n d , the l a s t two in her own. Anne i s very thought fu l . She speaks slowly and p r e c i s e l y , and chooses her words c a r e f u l l y . A f te r l i s t e n i n g to copies of the audio-tapes of the interviews she was p leasant ly surpr ised at how a r t i c u l a t e she was. However, she a lso found the interviews to be very intense and t i r i n g . She compared them to the i n t e n s i t y of d iscuss ions in support groups for women with breast cancer. She sa id that in both s i tua t ions you chose your words very c a r e f u l l y . The f i r s t interview took place at the end of A p r i l . The interview star ted with my asking Anne when she was diagnosed and what happened. She r e c a l l e d i t had been in the l a te summer of the previous year. She had been down at the beach in the evening. Later that night she woke up uncomfortable, with a s t ing ing in her back. She was a l i t t l e concerned, th ink ing that she might have a bad react ion to an insect b i t e . The next morning as she was doing 33 Breast S e l f Examination she discovered a lump in her breast . "I found i t myself . And I knew at that time that , i t was d i f f e r e n t , that i t was probably cancer. Just from f e e l i n g the lump, and I hadn't f e l t i t before , and I 've always had lumps and bumps in my breas ts . But t h i s was d i f f e r e n t . It f e l t d i f f e r e n t . And I s t i l l 33 Breast S e l f Examination (BSE) i s a manual s e l f -examination of breast t i s s u e used to detect changes in breast t i s s u e . The Canadian Cancer Society recommends women do BSE once a month (Canadian Cancer Society 1991). 60 wonder how I could have missed i t because i t was 1.7 centimeters . . . A l i t t l e vo ice ins ide of me s a i d , 'Get t h i s checked out, t h i s i s not r i g h t ' . " Anne phoned her family doctor immediately and made an appointment for the fo l lowing week. At that appointment she discussed the s i t u a t i o n with her doctor and decided that she wanted to be re fer red d i r e c t l y to a surgeon rather than having any t e s t s done f i r s t . She appreciated her family doctor g iv ing her that opt ion . In two or three weeks she had seen the surgeon and had a mammogram34, a needle b i o p s y 3 5 and an u l t r a s o u n d 3 6 . A f t e r a l l the tes ts had been done she came home from work to f i n d a message on her answering machine asking her to c a l l the d o c t o r ' s o f f i c e . "I jus t knew. I t was jus t a f e e l i n g I had. It turned out that there was [malignant] c e l l s in the needle biopsy they had taken. So t h a t ' s when things r e a l l y s tar ted to happen, . . . Maybe a part of that was fear . A n t i c i p a t i o n of the worst. But something ins ide of me I th ink was preparing myself for some bad news, you know. I t ' s almost l i k e that same l i t t l e v o i c e , when I had the choice between a mastectomy or A mammogram i s an x-ray of the breast t i s s u e . I t i s used for both the diagnosis of breast lumps and screening for breast cancer (Canadian Cancer Society 1991). 35 In a needle biopsy a surgeon i n s e r t s a needle into a lump to get a sample of the t i s s u e . There are two types of needle biopsy: f ine needle that only takes a few c e l l s , and a l a r g e r -needle that takes a small p iece of the lump (Love 1990). An ultrasound i s a t e s t where high-frequency sound waves are sent i n pulses through the breast t i s s u e . It i s used to determine i f the lump in the breast i s f l u i d - f i l l e d , such as a c y s t , or s o l i d , such as a fibroadenoma or a cancerous lump (Love 1990) . 37 A mastectomy i s the s u r g i c a l removal of the a l l the breast t i s s u e . A modif ied r a d i c a l mastectomy includes the removal of some of the lymph nodes from under the arm on the same s ide as the a f fected breast as w e l l . A r a d i c a l mastectomy i s where the breast t i s s u e , the lymph nodes and the muscles of the chest wal l are s u r g i c a l l y removed. A prophy lac t ic mastectomy i s a 61 a lumpectomy that l i t t l e vo ice s a i d , 'Go with mastectomy.' That was not a hard dec is ion on my part e i t h e r . There was something wi th in me t e l l i n g me these t h i n g s . " Anne took her best f r i end with her to her second appointment with the surgeon for moral support and a lso to take notes, because Anne knew she would not remember a l o t of what the surgeon was going to t e l l her . A f te r the second appointment Anne went through fur ther 3 9 t e s t i n g to see i f there had been any "mets" . "And that was a d i f f i c u l t pe r iod . Waiting for the r e s u l t s of that . Because depending on those, the r e s u l t s of the t e s t s , i t would a f f e c t the surgery. But they a l l turned out negat ive, thank God for that . They booked me for surgery towards the end of September. . . I t was fortunate that I was bumped in a week e a r l i e r too. A l l e v i a t e d a l o t of the mental anguish I was going through too. . . The wait ing per iod i s jus t t e r r i b l e . You have so many questions and no answers. Or so few answers. . . I must say the doctors were wonderful. The whole th ing was hastened a long. In comparison to some of the s t o r i e s I have heard where women have had to wait fo r longer per iods of time e i ther to get into see a doctor or to have the surgery. I c a n ' t imagine even what that would have been l i k e to wait longer than what I had to wait . And my process was very f a s t . A month and a h a l f . " I asked Anne to t a l k about making the dec is ion to have a mastectomy rather than a lumpectomy. mastectomy done on asymptomatic women to prevent breast cancer (Love 1990). In these interviews a "mastectomy" usua l ly re fe rs to a modif ied r a d i c a l mastectomy. 3 8 A lumpectomy i s the s u r g i c a l removal of the lump with a small rim of normal t i s s u e around i t (Love 1990). 39 "Mets" i s short fo r "metastasis" the spread of cancer to another organ in the body. The spread i s usua l ly through the blood stream. Breast cancer most commonly spreads to the lungs, l i v e r and bones (Love 1990). 62 "To me perhaps i t was propel led by fear somewhat, you know, what about the remaining t issue? What i f they don' t get i t a l l ? . . . I guess there was a l i t t l e b i t of anger in there and I thought, you know, t h i s breast has betrayed me, i t has threatened my l i f e . I ' l l get r i d of i t . Because I don ' t want to have to worry about reoccurrence in the a f fected breast as wel l as my healthy breast . Now I only have to worry about one breast . . . I 've never been a breast person. It never meant that , i t ' s never played that great importance in my l i f e . . . I thought, t h i s would be a means of maybe susta in ing my l i f e , of help ing me get over t h i s disease would be to jus t take the breast . And that l i t t l e vo ice that I was t e l l i n g you about s a i d , 'Go with the mastectomy, t h a t ' s the th ing to d o . ' Yeah, so I.had the mastectomy and the a x i l l a r y node d i s s e c t i o n as w e l l . And, ah, they took out 27 nodes and one was p o s i t i v e for cancer. So, that ind icated then that I 'd have to get into fur ther treatment l i k e chemo . So I d id that t o o . " Anne spoke b r i e f l y about her experience in the h o s p i t a l fo r her surgery. She ta lked about how even though she worked in a h o s p i t a l she was not aware of what came a f te r the surgery. . 42 "Having the dra in in and i t ' s p a i n f u l to have the dra in taken out. And umm, you know, the i n c i s i o n ' s a l l covered up and that f i r s t unve i l ing of the scar , you know. Your arm i s , my arm was - I could hardly get my arm up at a l l because of the manipulation in my underarm to get at the lymph nodes . . . so that took physio . So these things were things that I 'd never thought o f . " Anne came home from the h o s p i t a l at the beginning of October and had her f i r s t appointment at the B r i t i s h Columbia Cancer The a x i l l a r y lymph nodes are the lymph nodes in the armpit. In an a x i l l a r y lymph node d i s s e c t i o n the lymph nodes are s u r g i c a l l y removed and examined under the microscope. I f cancer c e l l s are found in the lymph nodes i t i s an i n d i c a t i o n of microscopic spread of the cancer (Love 1990). 4 1 "Chemo" means chemotherapy, the cy to tox ic drugs given for cancer treatment (Love 1990). 42 . . A f te r surgery a dra in i s placed under the sk in in order to dra in the f l u i d away from the area were the breast was (Love 1990). Drains are l e f t i n for a few days. 63 Agency a few of weeks l a t e r . She remembers the exact date she had her f i r s t chemotherapy treatment, which was l ess than one month from the date of her surgery. I asked about her f i r s t appointment at the B r i t i s h Columbia Cancer Agency. "Well , I took my secretary with me, my f r i end ( laughs). And you know I walked in the doors, and I j us t broke down, I turned around and walked out. And I j us t stood on s t ree t and c r i e d my eyes out. You know i t was such a r e a l i t y by that po in t . Just a reinforcement that t h i s i s happening. Now I am here to d iscuss treatment. So I composed myself . And, the f i r s t person I came in touch with was the r e c e p t i o n i s t , and I guess she 'd seen i t a l l before , cause she was there with a box of kleenex. And she was wonderful ." At t h i s f i r s t v i s i t Anne ta lked to a nurse who took her case h i s t o r y , and to a s o c i a l worker. She a lso meet her oncolog is t fo r the f i r s t t ime, and discussed her case with her. They discussed the type of cancer she had. She was t o l d the var ious s t a t i s t i c s about s u r v i v a l ra tes . Anne f e l t i t r e a l l y wasn't necessary to t a l k about a l l the s t a t i s t i c s . She was t o l d about the chemotherapy she was going to have, how long i t would l a s t and the poss ib le s ide e f f e c t s . She was a lso t o l d what t e s t s would be done before each chemotherapy treatment and how she would be monitored. When she was f i n i s h e d that appointment she f e l t p leased, conf ident , and comfortable - "as comfortable as I could f e e l knowing what I was going i n t o . " I asked Anne about the chemotherapy. "But when I th ink back, you know, I don ' t l i k e to say something's been r e a l l y s h i t t y or t h i s i s a nightmare. I t r y to keep p o s i t i v e about th ings . But I have to say i t was gross , i t was a gross experience. . . The chemo I f e l t , I jus t f e l t l i k e my whole body had been puffed up or something from i t . I f e l t swollen when I came out of there . And I f e l t kinda hazy and s l u g g i s h . . . I t would take probably four to s i x hours i n t o t a l . The chemo administrat ion i t s e l f i s a shorter per iod of time maybe an hour, hour and a h a l f . But by the time you go in there and have your blood work done, they have to wait fo r the r e s u l t s , see your onco log is t , then up for your appointment, you know. I 'd be there fo r four to s i x hours so t h a t ' s a long s t r e s s f u l day. And you know you f e e l pret ty rough when you come home. This same f r i end of mine came to my treatments with me. And then she 'd come back and I had my own place at the t ime, she 'd cook dinner . Fr iends l i k e that , I mean i t ' s wonderful when you have f r iends l i k e that . On the 15th day my h a i r s tar ted f a l l i n g out. They sa id i t would happen and i t d i d . I j us t ran my hand through my h a i r , and there i t was, you know i t was coming out. And I j us t f e l t so betrayed when that happened. Now my h a i r i s f a l l i n g out. I 've l o s t my breast , my l i f e has been jeopardized to some degree, now my h a i r i s f a l l i n g out. What e lse i s going to happen, . . . So I went down to the l i t t l e shop and I got them to cut i t o f f . Eventual ly to make a long story shor t , I had t h i s f r i end or mine over and I sa id wel l I'm not gonna be p ick ing t h i s s t u f f up u n t i l i t ' s a l l out I decided to shave my head. So I thought w e ' l l make a party of i t . I sent her out, and get a can of shaving cream and a s i x pack of Bic razors and w e ' l l do i t . And we d i d , i t was great . I don' t know I guess, you've got to look at things from a s i l l y point of view. That 's the only way I could get through i t was to be s i l l y about i t . You know have a laugh. I f I'm going to go bald I might as wel l enjoy i t . . . 1 decided not to go with the wig. Tha t 's not my s t y l e . . . When your eyebrows s t a r t f a l l i n g out and eyelashes s t a r t coming out, I found that hard. Your face looks , t h e r e ' s no d e f i n i t i o n to your face r e a l l y without your eyebrows or without your eyelashes. . . I t ' s such an a l te red body image, you know. You've gone through a t o t a l shocking experience. There 's been a t o t a l lose of cont ro l of your l i f e , and now these things are happening to your body that you c a n ' t c o n t r o l . . . I c a l l e d myself E .T . because I looked so weird. But we laughed about i t anyway I mean what're you going to do? No point of s i t t i n g at home. I mean i f you ' re gonna f igh t for your l i f e , i f your gonna l i v e , you have to l i v e your l i f e for l i f e and not for death. . . Fear, fear i s a b ig one. You wonder i f they are going to 'get i t a l l ' . I f there are any of those st ray c e l l s f l o a t i n g around somewhere." I asked Anne how she f e l t when she had f i n i s h e d her 65 chemotherapy. She was r e a l l y looking forward to being f i n i s h e d and t r y i n g to get some "normalcy" back in her l i f e . However the month that she f i n i s h e d her chemotherapy she got pneumonia. She got the pneumonia because her immunity was low a f te r going through the chemotherapy. Being s i c k gave her qui te a scare because she thought the cancer had spread. "It was devasta t ing ." She had a low grade fever and t rouble s leep ing . She was given a n t i b i o t i c s and had to wait for s i x weeks to see i f her lungs c lea red . So again there was a wait ing per iod . A part of her had been looking forward to being f i n i s h e d the chemo, then t h i s happened, so there was a delayed r e a c t i o n . "The other s ide of the co in I f i n d was that , umm, you are no longer in that s i t u a t i o n where the re 's a l l the doctors and nurses and you are going there every 21 days, and you are a c t i v e l y doing something, to f i g h t t h i s , you know, in terms of treatment. So a f te r the chemo i t ' s l i k e , shouldn ' t I be doing something? What do I do now. . . There i s a j o y f u l a n t i c i p a t i o n for i t to be over and then when i t happens i t ' s , i t ' s rather f r igh ten ing . I t i s l i k e you have to come out from under the wing now." Now Anne has been doing invest iga t ions on her own about what she c a l l s complimentary therap ies , therapies to compliment the medical therapy she has had. Complimentary therapies include herbal medicines and v i tamins. She has found that there i s a l o t of information a v a i l a b l e . A l l you have to do i s go to a heal th food store to see a l l the d i f f e r e n t products. In her experience there are many d iscrepancies in the information a v a i l a b l e , as d i f f e r e n t people recommend d i f f e r e n t th ings . She i s doing her own research. She goes to the stores and gets l i t e r a t u r e and telephone numbers. She says i t ' s l i k e there i s an underground 66 subcul ture . She has made no d e c i s i o n s , but i s w i l l i n g to look at anything. During our d iscuss ion Anne mentioned changes that had happened in the l a s t couple of years . I asked her to t e l l me more about those changes. She sa id a l o t had happened in the two years p r i o r to her being diagnosed with breast cancer. A r e l a t i o n s h i p she 'd been involved in for s i x years had broken up. She had had a dr ink ing problem and had been sober fo r 13 months p r i o r to her d iagnos is . A l s o , she f e l t that she had been going through r a d i c a l changes in her a t t i tudes and in her view of l i f e . "What I had thought maybe was so important before , and what I would waste a l o t of my own energy on, I won't do i t any more. I won't p lace , I don ' t place great importance on, a l o t of s o c i e t y ' s standards now. You know, in terms of the way you dress . Things l i k e that . . . One of the main things that has come out of i t i s that I am going to l i v e my l i f e for myself now. And I am not l i v i n g i t fo r anybody e l s e . And I know there i s ru les and regulat ions i n l i f e and in s o c i e t y , . . but , you know, I, I'm going to fol low my own heart . . . Just that I'm t r y i n g to f i n d my inner s e l f . I t has given me 'cause to examine myself . . . I th ink I had put my l i f e on, on ho ld , fo r so long. But I was l i v i n g a good l i f e I don' t want to make i t sound l i k e I was s i t t i n g here wait ing for cancer to happen or something. I mean I was having a good l i f e but, . . when I look back I was o f f t rack . And maybe, you know, i f t h i s had never happened, maybe I would s t i l l be at that po in t , . . . But I th ink maybe the cancer has been, a ca ta lys t to do that , now's the time to do i t . . . I t i s almost l i k e i t has given me reason and freedom in my own mind to say, 'Okay t h i s i s what I am going to d o . ' I am not going to wait and umm, l o g i c a l l y plan everything out because l i f e doesn' t work that way. . . I t has allowed me to l e t go of some th ings . It has given me a freedom in some way." Part of t h i s process of change i s that she s tar ted to develop a f a i t h . Her f a i t h was growing through readings and 67 things that were happening to her, "through help that I had f e l t I had received from God." When she was diagnosed with cancer she was thankful that she had s tar ted to develop her f a i t h . " I t ' s c a r r i e d me through a l o t of the r e a l l y dark t imes. And i t ' s given me a sense of joy , that I 've never f e l t before . Now whether, that must be from the r e l a t i o n s h i p that I 've, the personal r e l a t i o n s h i p that I th ink that I 've estab l ished with God. He's proven himself to me. And so out of t h i s b i g nightmare you know, I, I can t r u l y f e e l t h i s , t h i s , comfortable wonderful warm sense of happiness, and joy and contentment. So maybe i t ' s , i t ' s that comfortableness that has given me the i n i t i a t i v e to get on with ce r ta in aspects of my l i f e that I hadn't be fore . " Anne mentioned that she was planning a t r i p to see her fami ly . Fr iends she has known for a couple of years say that she has changed a l o t . She wonders what her family w i l l see when she goes back. She i s unsure about going back to see them. "I want to be strong enough wi th in myself . Because when you go through something l i k e t h i s , . you know, the growth and the changes can ' t help but remould you, and reshape you e n t i r e l y . So i t i s kinda l i k e I don' t want to go back and, be a l l over the board I wanna be together. Represent myself to these people aga in . " Her family has not been around during her cancer experience as they l i v e in another part of the country. However, her mother d id come out when she had her surgery. "I had a l o t of anger. And, I had a l o t of issues to deal wi th . You know, my breast was gone. I'm mad. I'm in pa in . And I cou ldn ' t stand, to see the pain on her face , you know. She was a wreck, and that was j u s t , that was gonna eat me a l i v e , seeing that . So, I got my secretary , (laughs) I got my secretary to ah, to t a l k to my mum. And I t o l d my mum to go home. I sent her home. That was so hard. . . I d i d n ' t want to hurt her , and add to the pain she was in because she says, I mean, i t s l i k e I am sure any mother would say, ' I t should be me and not y o u . ' And she sa id that to me." 68 She has not seen her mother s ince then, but she does c a l l and t a l k to her parents every week. When she was f i r s t diagnosed she could not t e l l her family about her cancer, so she got her secretary to do i t . "I c o u l d n ' t , I cou ldn ' t say that to them because I knew that i t was going to jus t tear them apart . I knew that the pain that they were going to go through when they heard that news. I cou ldn ' t br ing myself to do that . . . I waited before , you know I had a desperate need to t e l l them what was going on, and my family and my f r iends but I d i d n ' t want to say anything u n t i l I had some answers. I thought why should I put t h i s on them because they ' re gonna have the same questions I have and I don ' t have any answers. So I waited before I t o l d anybody u n t i l I knew that okay we were going to go have the surgery and I had the booked date for surgery. Then we made the phone c a l l s . . . That was one of the f i r s t things that I thought of when I was t o l d how do I, how do I t e l l my fami ly . My mum and my dad. I knew i t was gonna jus t . . umm ah, I wouldn't wish i t on anybody." A f te r get t ing to know Anne I asked her what she thinks caused her cancer. She mentioned that she has read Bernie S e i g e l ' s 4 3 books and be l ieves what he has wr i t ten . "You know, I can look at i t from the point of view of umm, jus t draw of the cards. Part of me looks at i t that way. Umm, you know instead of saying why me? Why not me? That sor t of th ing . Another part of me says, that I almost, you know, i t i s hard to say things l i k e t h i s because I am not sure i f I t o t a l l y be l ieve i t or not, but i t ' s l i k e i t was, i t ' s been a g i f t to r e d i r e c t my l i f e . I was going in the wrong d i r e c t i o n , so t h i s , t h i s i s the stop along the road that says maybe evaluate what i s going on in your l i f e and make some changes. And those changes are maybe things that I have wanted to do for a number of years but jus t haven't had the nerve or the guts to do i t . . . That 's umm, not a medical d e f i n i t i o n of why I have i t but I th ink t h e r e ' s gotta be something there other than jus t get t ing cancer. . . 4 3 Se ige l (1986, 1990) 69 I f I could have avoided t h i s disease but s t i l l gained, the ins igh t and everything that I have been f i l l e d up with s ince my d iagnos is , I mean that would be great . But unfortunately or for tunate ly whatever way you wanna look at i t , you know, you've got t h i s disease now, and, who knows, w e ' l l see. But ah, I mean my, my intent i s to be around for awhile, qui te awhile you know. I plan on l i v i n g a good l i f e . And, ah, and i t ' s almost l i k e I am going to l i v e the l i f e I was born to l i v e now. Maybe not l e t a l o t o f , judgements or other people 's ideas or establ ishment 's ideas d ic ta te what I'm going to do now with my l i f e . So i t ' s been a g i f t i n some respects . What I have gained from the experiences. It i s almost l i k e i t s outweighed the d isease . 1 1 Anne described the experience of going through changes as being l i k e a pendulum that i s slowing. You go through the extremes and then f i n d common ground in the middle somewhere. Some days are very d i f f i c u l t s t i l l . "Sometimes I get up in the morning, and I s t i l l c a n ' t be l ieve what's happened. Occas ional ly when I'm get t ing dr ied o f f in the shower I ' l l catch a glimpse of myself , i n the mir ror . Now I can look at my scar , and, I th ink I'm r e l a t i v e l y comfortable with that , but occas iona l ly i t jus t kinda catches you. Wow, yeah I am missing that , that part now. And then some days are worse than others too, you know. I s t i l l have bad days. Down days. But I th ink what I f i n d i s you have, allow yourse l f that t ime, but don ' t dwell on i t . . . There 's no point in s t i f l i n g the emotions, so i t i s jus t going to eat you up a l i v e . And, you know, as I say to a f r i e n d of mine wel l i f something's not r i g h t or something needs changing, or I 've got some bad news or whatever deal with i t allow myself the emotions but , you know I'm not going to grow a tumour over i t . . . Each day i s going to be here i t i s what you' re going to make of i t . " Anne does th ink about the cancer, that i t may recur and that i t might k i l l her . Sometimes she f inds i t hard to s i t i n the support group and l i s t e n to other women t a l k about t h e i r 70 reoccurrences, or to hear that someone has d i e d . "It i s always in your face . The issue of mor ta l i t y . And I know that we are a l l going to d i e , i t ' s i n e v i t a b l e . But the idea i s that you have, you know a good l i f e , and you get o ld and d i e . Not that you are 34 or 40 years o ld and you know you spent the l a s t two or three years in treatments and i t ' s back . . . Yeah t h a t ' s hard. I don ' t l i k e th ink ing about i t , but i t ' s a r e a l i t y . But I th ink you have to keep things in t h e i r p lace too. You know, t h a t ' s where hope comes in and p o s i t i v e emotions and p o s i t i v e a t t i t u d e . Because even i f i t does come back I don ' t want my time to have been wasted i n the in ter im. Being negative or unhappy not doing what I want, not working toward the goals that I have. But yeah, t h a t ' s a raw r e a l i t y that we a l l f a c e . " Knowing that the cancer may recur and be the cause of her death makes i t d i f f i c u l t to t a l k to other people about what has happened. "And i t ' s a p a i n f u l r e a l i t y too. . . a few people have sa id to me, 'D id they get i t a l l ? ' Well I don' t know, and nei ther do the doctors . Nobody knows. That 's why I 've had the chemo, t h a t ' s why I'm on the tamoxifen . That 's why there i s that doubt. . . I 've learned to accept that in people because you know people don' t understand the process of cancer and treatment. But my blood would jus t b o i l when people would say that to me . . . and I guess i t would anger me because I have to say I don ' t know. There 's no concrete answer I'm doing a l l I can with what I have, but nobody knows. . . I th ink because a piece has been removed. The diseased piece has been removed. But I guess people don' t r e a l i z e t h a t ' s t h e r e ' s the st ray c e l l s that break o f f t h a t ' s why i t was in my lymph node. Now who knows where e lse i t went. I 've got a good b i l l of heal th r igh t now and I f e e l , I f e e l qui te comfortable that I'm okay. But t h e r e ' s always that doubt. I f you could jus t get r i d of that doubt. But you c a n ' t so you learn to l i v e with i t . " That doubt i s why i t i s good to go to the support groups and Tamoxifen i s a drug, an estrogen blocker used in the treatment of breast cancer. I t i s usua l ly taken for three to f i v e years a f te r d iagnosis (Love 1990). 71 t a l k to other people about i t . Anne f i r s t s tar ted attending a support group r igh t before she had her f i r s t chemotherapy treatment. She i s s t i l l going. "Unless you've had i t you can not f u l l y understand what i t does to your l i f e . In a support group the women have a l l experienced i t . So the re 's a l o t of emotional support to be g iven, and taken. Umm, a l o t of advice on how to deal with maybe some emotions that you' re having or problems that you' re up against . . . . What to access to get informat ion. I th ink that t h a t ' s important. There 's a closeness there . Must be l i k e AA or something l i k e that , t h e r e ' s a common th ing that holds you together ." I asked Anne whether she considered having reconst ruct ive 46 • • . . . surgery . She has not , i t i s not a p r i o r i t y with her . She i s not "seeing" anyone, but in the future that may change and then she may want i t . "My a t t i tude about i t r i g h t now, that i f I was to do i t I wouldn't do i t for somebody e lse I 'd do i t for myself , you know. I f my partner cou ldn ' t handle i t , the scar or the, the breast missing then t h a t ' s something that he would have to work a t . Not me. Exac t ly , I'm there , I'm understanding I, I can lend a good ear type of th ing and we can t a l k about the issue but I wouldn't do i t fo r somebody e l s e . 'cause i t ' s my body." The second interview was three weeks a f te r the f i r s t , which provided both Anne and me the opportunity to r e f l e c t on what we had ta lked about. As we got s tar ted I asked Anne to t a l k more about her l i f e before she was diagnosed with cancer. "And i t was qui te an adjustment to be l i v i n g alone again. You know t r y i n g to get out and meet new people, and develop new f r i e n d s h i p s , and things l i k e t h i s . . . That 's where my l i f e was p r i o r to t h i s happening. I put i t i n terms of . . . i t was l i k e a f te r a number of AA re fe rs to A l c o h o l i c s Anonymous. Reconstruct ive surgery i s where a p l a s t i c surgeon w i l l reconstruct the removed breast , using e i ther an a r t i f i c i a l implant or the woman's own body (Love 1990). years of t r i a l s and not being very happy with what I was doing and where I was going and who I was. I 'd made some changes and I was get t ing i t together. I t f e l t good. And, you know, i t wasn't too long a f te r that , that umm the cancer became evident . So I have t o , I th ink and I say that i f i t was going to happen i t cou ldn ' t have happened at a bet ter time because at l eas t I th ink that I was in a mental s tate where I could cope with t h i s now. I f i t had happened a year or two before I would have had a l o t more problems to deal with besides jus t the cancer ." Then I asked Anne to t a l k about her l i f e s ince she had f i n i s h e d her cancer treatment and recovered from pneumonia. "It was then at that point that you r e a l l y s ta r t to think of your recovery now. And I must say that t h i s recovery per iod has been, jus t as d i f f i c u l t as going through the treatment, I have found. But in a d i f f e r e n t way. I t ' s l i k e a l l of a sudden you ' re removed from that focus, when you are in treatment you can focus on what you ' re doing because you have appointments and every 21 days you have chemo, umm, you' re going to the support group, you ' re meeting a l o t of people. I a c t u a l l y equate that por t ion of i t to the f igh t or f l i g h t response. You've been h i t with something and you go into t h i s f i g h t , I go into the f igh t response. . . You're up. You're ready. You're ready for bad news, as much as you can be, umm. But a f te r that , then you ' re t o l d , 'Wel l okay, w e ' l l see you in three months.' And t h e r e ' s no, I have found i t d i f f i c u l t and, as I thought the other day, i t ' s l i k e t h e r e ' s no bridge from the treatment at the Agency in dea l ing with that focus to when you' re t o l d , 'Okay, i t ' s a l l done, ' umm, and, as somebody sa id to me, 'Now a l l we do i s p r a y . ' Well there must be something e lse I can do too, I mean. You jus t put a l l t h i s in to my body and here I am with no h a i r and b lah , b lah , b lah . And now i t ' s l i k e okay w e l l , we've done our part and t h a t ' s not to c r i t i c i z e the Agency t h a t ' s what they ' re there for and my experience has been so good with them, I 've been t reated so w e l l . But, now i t ' s up to me, to get out there and go to d i f f e r e n t stores t a l k to d i f f e r e n t people who a r e n ' t on a r e g i s t e r to contact a f te r treatment in terms of what you can do for your heal th or i s there any complimentary therapies maybe you can go i n t o . " The Agency re fe rs to the B r i t i s h Columbia Cancer Agency. 73 A couple of weeks before t h i s interview Anne had celebrated her b i r thday. She ta lked about some of the fee l ings that event had t r iggered . "But that was r e a l l y i n t e r e s t i n g , you know, a bir thday has never bothered me in terms of age and I don' t th ink of things r e a l l y in terms of age. But for some reason, and I don' t know what the reasons are , t h i s - t h i s bir thday was d i f f e r e n t . Because I th ink i t made me r e a l i z e that umm, maybe some of my hopes and dreams won't come true in terms of having a family because I'm 35 and I'm on the tamoxifen . . . The question of mor ta l i t y , came up, you know. Maybe I won't, you know, get to be an o ld lady and f racture my h i p , and a l l those things that happen to o lder people maybe that won't happen to me. I j us t found i t hard. But then I thought t h e r e ' s no guarantee anyway, somebody sa id to me. But I th ink the d i f fe rence i s t h e r e ' s even l ess of a guarantee now. Tha t 's why we have to make the most of each day. . . So that was umm, so that was an i n t e r e s t i n g day." Anne f e e l s that she has changed during her experience with breast cancer. "I seem to be l ess to le rant of some things now and more to le rant of other th ings . Which i s i n t e r e s t i n g because I used to be genera l ly a very pat ient person on a l l l e v e l s , but now I f i n d that for the most part I don ' t l i k e to umm, I don ' t want to c a l l i t waste my t ime, but I don ' t want to spend a l o t of my time doing th ings , that don ' t mean that much to me. . .1 want, I l i k e to be productive with my time. But I can s t i l l jus t be s i l l y too. You know I al low myself that . I'm not saying that I have to be t o t a l l y ser ious a l l the time and never have any fun. But there are things that I jus t I don ' t p a r t i c u l a r l y enjoy doing, that much. And I won't do i t now. I guess t h a t ' s the d i f fe rence before I would kinda go along with i t and, to le ra te behaviours in people or , i d l e conversat ion. And I w i l l get up and leave now. Bow out g r a c e f u l l y now and say I'm gonna go home and read or whatever. . . * ° As tamoxifen i s a hormone i t i s not recommended that women become pregnant while on the drug (O l ivot to , Gelmon and Kuusk 1995). Anne has a lso had chemotherapy which in some cases can br ing on premature menopause. 74 We've got , we've been given a l i f e , and, we should use our minds you know and, and love one another and t r y to b u i l d good th ings , for the k ids that are coming up, and, I guess a p o s i t i v e n e s s . So I don' t wanna be, so I don' t want to be around to much nega t iv i t y , you know, b i t ch ing and complaining and t h i s sor t of t h i n g . " At the end of February, at the end of her chemotherapy, Anne had moved in with a f r i e n d . In part i t was to help Anne out f i n a n c i a l l y , u n t i l she knew where she would be going i n the fu ture . Anne enjoyed having a roommate and two c a t s , but considered t h i s an inter im arrangement and planned to move soon. "I want t o , I wanna get on with my l i f e . Umm, t h i s being, t h i s l i v i n g arrangement, i s l i k e the t a i l end of maybe stage II. Because i t ' s s t i l l re la ted to the cancer, t h a t ' s why I'm here okay. I'm anxious to get out and get my own place again. . . The l a s t couple of months have been somewhat hard - i t ' s a b i t d i f f i c u l t . I 've been angry a l o t , been f r u s t r a t e d . . . But i t ' s l i k e the l a s t you know three or four months l i k e a l l of a sudden t h e r e ' s been the ugly bag's been brought out and you have the f r u s t r a t i o n and the anger and the fear and the doubts. So, t h e r e ' s that kinda l i k e black cloud in t h i s l i t t l e ugly bag and you open i t up and then you have a look at i t . So t h a t ' s deal ing with a l l the negative th ings . That 's what I'm working through r igh t now. And again I f e e l that i t won't be too too much longer before I can you know s e t t l e a l o t of those emotions in my heart and in my mind. . . This i s why I l i k e the support group. You go there and you can ve rba l i ze t h i s to other people, and t h e y ' l l say wel l you know maybe your hormones are a b i t out of whack r igh t now, or maybe i t ' s the drug that you' re on doing t h i s to you. And t h a t ' s , l i k e yeah, maybe i t ' s not a l l me, maybe there i s some outside inf luence in t h i s too and t h a t ' s good, i t kinda takes the heat o f f myself a l i t t l e b i t too . . . understanding that there are other fac tors as w e l l . And even what i s going on in your personal l i f e too has bearing on how you ' re f e e l i n g in terms of the disease process and what you've been through. . . Everything has a bearing on how you ' re f e e l i n g but I jus t think that i t ' s important that you recognize your fee l ings and you deal with them." 75 I asked Anne to t a l k about her f r i e n d s ' react ions to her d iagnosis of cancer. She sa id that there had been a v a r i e t y of responses. Some f r iends have been in touch, always i n q u i r i n g about how she i s doing, but i t i s not the focus of what they t a l k about. Another she has not heard from much at a l l . " I t ' s funny because one of the questions I'm frequent ly asked i s , 'Well d id they get i t a l l ? ' . . . I don ' t know, I th ink they d i d . Another person I know's react ion to i t i s , 'Well don' t worry i t ' s jus t a l i t t l e t h i n g ' . . . Perhaps t h i s person cou ldn ' t deal with i t and t h a t ' s t h e i r way of say ing, you know. I th ink deep down maybe they ' re t e r r i f i e d for me. . . Not understanding I th ink i s one of the problems and t o t a l lack of knowledge about what i t i s about. . . They don' t understand i t . They think that you can, have a lump or a breast removed and t h a t ' s i t . They don' t understand why you have chemo, or rad ia t ion , umm. That, that t h e r e ' s no guarantee that quote unquote they got i t a l l . . . I t ' s an abstract d isease . . . Tha t 's what i t i s . There 's not r e a l l y a l o t of answers. There 's a l o t of s t a t i s t i c s and s tud ies , but r e a l l y when you f i l t e r i t a l l down we s t i l l don' t know too much. So, with a l l the things that can go on in terms of surgery, fol low ups, what you know, s ide road and problems that come up l i k e pneumonia or you know r a d i a t i o n i f i t burns your oesophagus. These sor ts of problems you know. What s tar ted out as one word, cancer, i s by the time you t r y to get the f u l l p ic ture i t ' s t o t a l l y abstract i t reminds me of something maybe Picasso would have done. Where you look at i t and oh yeah I can see that and I can see that and you put i s a l l together and i t makes sense but i t doesn ' t . . . " For many people cancer i s a powerful word. That word t r iggers many d i f f e r e n t responses based on t h e i r experience with cancer. Radiat ion therapy i s used in the treatment of breast cancer. Radiat ion i s commonly used in conjunct ion with a lumpectomy to destroy cancer c e l l s that may s t i l l be present i n the breast (Love 1990). 76 " I t ' s l i k e I can walk down the s t reet and meet somebody and t e l l them what's happened and t h e y ' l l say, 'Oh my aunt had that she 's f i n e . She's ninety years o ld now. F ine . Y o u ' l l be f i n e . ' The next person you t e l l i t too, 'Gee, my aunt died of t h a t . ' So you go from one extreme to the other you know. And you ' re kind of s l o t t e d somewhere in the middle ." We ta lked about Anne's work. She explained that she worked r i g h t up to the Fr iday before she was to have her surgery. In order to be able to get the tes ts done before the surgery Anne jus t took overtime days. "I d i d n ' t t e l l anybody at that time because I d i d n ' t have any answers. The same reason why I d i d n ' t c a l l my family u n t i l I had some answers." Her f r iends at work were " just great" . The week a f te r Anne came out of the h o s p i t a l she got phone c a l l s , cards and f lowers. "They've been super ." Even now she pops into her work s i t e occas iona l ly to see her co-workers. Just a few weeks ago Anne saw a video on women's experience with breast c a n c e r 5 0 . "You know i t had been awhile s ince I had watched something l i k e that and i t j u s t , surfaced my emotions. I f e l t r e a l l y emotional. Teary jus t l i s t e n i n g to these women. Because i t ' s jus t l i k e you can t o t a l l y re la te to what they are say ing, and you can f e e l what they are f e e l i n g . So the emotions were very e a s i l y brought up again. And I f i n d i t j us t - I f i n d t h a t ' s one of the changes t h a t ' s occurred in me too. I can be, I can become, I can re la te on a very emotional l e v e l very quick ly with people that are in pa in . I could before , I was always, you know, s e n s i t i v e to that sor t of t h i n g , but t h i s i s more l i k e an experience with people than j u s t , you know, l i s t e n i n g to somebody's s to ry . . . Feel what they f e e l . That surpr ised me. It took me a l i t t l e b i t o f f guard when that happened that day. That I would get so emotional jus t watching that video and l i s t e n i n g to these women t a l k . It h i t so c lose to home.11 Destined to L i v e : The Roads to Recovery, (Landsbury Company 1988) 77 A couple of months ago Anne went out and bought a p r o t h e s i s 5 1 . " I 'd jus t been wearing that l i t t l e f i b r e f i l l e d b a l l that they give you and i t tends to migrate, you know. So I went out and got a p ro thes is , and i t ' s r e a l l y made me f e e l bet ter wearing i t . I t g ives me a b i t of weight on that s i d e . And much bet ter shape than the b a l l d i d . I c a l l i t my Betty. I don ' t know why, Betty, Betty Boob. . . Because I hadn't planned on doing that , buying that , that p a r t i c u l a r day. I 'd been th ink ing about i t but I hadn't made any dec is ion to do i t . And one day I was out with a f r i end and, that was i t . L e t ' s go check out a store and, and I bought one. Kinda i n t e r e s t i n g how time, so much i s t iming and when you ' re ready for i t and then you do i t . I th ink t h a t ' s what t h i s experience i s a l l about t o . Is get t ing ready for something preparing yourse l f and then when you f e e l good about i t , f e e l r i g h t , you do i t . " Anne found the prothesis qui te expensive. I t cost $300. the bras to go with i t are $40 each. She i s glad her prothes is i s p a r t l y covered by her extended heal th coverage, although the bras are not. However, for her the cost i s worth i t . We ta lked about some of the fund r a i s i n g and awareness r a i s i n g that has been going on around breast cancer. Anne was very glad to see i t happening and thinks i t i s very necessary. In the future she would l i k e to become involved in volunteer work on something to do with breast cancer, although in exact ly what she i s not sure. "I 'd l i k e to know more about what's out there i n terms of a stronger stance perhaps that we could take, jus t for a stronger v o i c e . You know, you mean, you look at AIDS, and how p a r t i c u l a r l y you know I th ink i n i t i a l l y i t was the gay community that r e a l l y was vocal i n get t ing the knowledge out there and saying l i k e t h e r e ' s something wrong here. And i t ' s jus t a matter of , of coming together and get t ing enough vo ices and enough people and not being a f r a i d to back down. A prothes is i s an a r t i f i c i a l breast worn in the pocket of a s p e c i a l l y designed bra . 78 But you see I don ' t know a l o t of the p o l i t i c a l issues at t h i s po in t . I don ' t know what t h e i r platforms are or what they ' re saying these groups. . . Although you know there seems to be more, umm, more of an attempt to make i t more v i s i b l e . But I don ' t know i f t h a t ' s maybe jus t Hollywood in some, in someway put t ing out movies or t h i s sor t of th ing , you know, because i t ' s maybe the in disease at t h i s t ime. . . Every disease has i t ' s surv ivors and i t s v i c t i m s , and i t s support groups, and people who are t o t a l l y a f fec ted by i t . I guess breast cancer i s mine." I asked Anne what she had meant in the f i r s t interview when she sa id that she d i d n ' t f e e l i t was important for her oncologis t to t e l l her a l l the s t a t i s t i c s . "Well the problem for me I know i s that I don ' t want to be t o l d a bunch of numbers. I don ' t want to be t o l d that you know x number out o f , or x out of ten women survive with t h i s treatment or with that treatment. I mean maybe i t does r e f l e c t the t ru th of the matter but s t i l l , I guess the re 's a part of me that I don' t want to know that . I want to have my treatment. I wanna do what I can for myself . I wanna be w e l l . And I don ' t wanna hear your numbers because that might make me th ink , w e l l , maybe I don ' t have as much of a chance . . . Numbers make i t n ice and neat and t h i s i s n ' t a n ice neat d isease . Nice neat numbers in an abstract d isease . I don ' t wanna hear i t . Maybe t h a t ' s a part of den ia l maybe, on my part r i g h t now but, I don ' t need the numbers. . . But I th ink we should be concentrat ing on the pos i t iveness you know. And not to candy coat the i s s u e , but jus t to keep things on a p o s i t i v e note. On a more acceptable note to people. You have to know the f a c t s . You know everybody knows that cancer i s a p o t e n t i a l l y f a t a l disease anyway, so must we go over and over about the numbers, and i f you take tamoxifen i t increases your chances by x percentage, and ye t , on the same hand t h e y ' l l t e l l you in the same breath but you know evidence has proven that you can develop cancer of the uterus, o r , G. I . problems, i t might send you into some sor t of mixed up hormone imba1ance. "G. I . " means g a s t r o - i n t e s t i n a l . 79 I can understand why they do i t , but, I j us t sometimes, I mean maybe say i t once and t h a t ' s enough. . . When i t comes to disease s t a t i s t i c s are b a s i c a l l y based on, I mean success and f a i l u r e but , I th ink when I th ink of s t a t i s t i c s I th ink of that they ' re more involved in death than in l i f e . . . You can count on death." The oncologis t had ta lked about percentage of people who had survived with var ious treatments at f i v e and ten years , but she cou ldn ' t remember exact ly what she s a i d . "Now, the b ig th ing i s your f i v e year check up. You know i f you make i t to f i v e years and you' re s t i l l c l e a r , t h a t ' s good. I mean I look forward to that 'cause I ' l l be 40, you know. T h a t ' l l be a good year I'm sure. At t h i s point I don' t th ink too much about the numbers. . . There 's enough to think about without worrying about the what i f ' s . " The t h i r d interview was three weeks a f te r the second. By t h i s time Anne had moved in to her own apartment. She was very happy in her new p lace . Again the interview took place at her k i tchen t a b l e . I asked Anne i f she knew the name of the cancer she had. 53 " I t 's adenocarcinoma of the breast . The tumour was estrogen receptor p o s i t i v e , 1.7 [cent imeters] . Umm, I th ink i t ' s a stage II because my lymph nodes were involved, there was one lymph node of 27. So i t ' s a stage II. . . There are d i f f e r e n t types of breast cancer. That 's what mine i s . I t ' s not an aggressive type of tumour growth. Some women I know have had more aggressive cancer, so the treatment was more aggressive. The treatment f i t s the tumour type of t h i n g . " 53 . . An adenocarcinoma i s cancer that a r i s e s in gland-forming t i s s u e (Love 1990). Most of the other women interviewed d id not mention the type of cancer they had. 54 Estrogen receptors are prote ins found in some c e l l s , to which estrogen molecules w i l l a t tach . I f a tumour i s estrogen receptor p o s i t i v e i t i s s e n s i t i v e to hormones (Love 1990). 80 That was a l l she could remember about her tumour. She has the pathology report and could have looked i t up, but we decided against that . We ta lked about the c h a r a c t e r i s t i c s of the tumour that women i d e n t i f y as being important at the time of treatment and then seem to remember. "It seems to be umm, the s i z e i s used in grading the tumour as w e l l , you know, i f i t ' s under two centimeters i t ' s considered umm, good, i f they can catch i t before , because a f te r two centimeters they consider i t l a rge . In terms that i t ' s perhaps been there longer, because of the s i z e of i t . Yeah, so there i s that s i z e , whether the re 's lymph node involvement. Maybe t h a t ' s because i n i t i a l l y you ' re focusing in on, on the ah, the physicalness of the tumour. Where i t i s and how b ig i t i s . And then you go for treatment according to that . Afterwards, whether you ' re going to be on the tamoxifen, and i s determined i f your tumour i s estrogen receptor p o s i t i v e or negat ive. So t h a t ' s kinda l a t e r on maybe in the treatment. From my personal experience, now a f te r the treatment we deal with that por t ion of the tumour. P o s i t i v e so he suggested that you do the tamoxifen therapy afterwards, for three to f i v e years . Maybe i n i t i a l l y there i s only so much your bra in can handle you focus in on where the tumour i s and how b ig i t i s and has i t gone anywhere e l s e . . . That 's the information that you' re h i t w i th . " I asked Anne has i f she has been th ink ing about the future s ince being diagnosed with breast cancer. "The question i s now, what w i l l the s i t u a t i o n be in a year? What about recurrence? You know, the p re -cancerous por t ion of your l i f e , I'm sure i t goes through everybody's mind, ' W i l l I ever get cancer? ' Well t h a t ' s been estab l ished now because I do, I d id have cancer. So that question i s no longer umm, to be thought of . The fact i s , ' Y e s , ' now the question i s , ' W i l l i t r ecur? ' Along with that i s you know you th ink , wel l what w i l l my l i f e be a year from now. W i l l I be here f i v e years from now, 20 years from now. So, from that standpoint you do wonder. You know and even i f you have a p o s i t i v e a t t i tude and you' re th ink ing ahead. And ah, you know planning events l i k e a high school 81 reunion or a co l lege reunion t h i s sor t of t h i n g . You got , I personal ly c a n ' t help but have those thoughts in my mind. The what i f ' s . But i t i s important that you don' t umm, play i t up too much. And you make the most of each day that you have. . . More of ah, I don ' t know i f urgency i s the r i g h t word. But i f , you know, before i f you were th ink ing wel l i f I don ' t do i t t h i s year I can do i t next year. Now you think w e l l , I'm, gonna do i t now because I don ' t know. . . I caught myself the other day when I s a i d , wel l w e ' l l do i t next year . I thought, wow t h a t ' s rather bold of me i s n ' t i t . What an assumption here. But i t ' s good, you know. You have to make the assumption I th ink that everything w i l l be okay. Because you know, I wanna l i v e u n t i l I d i e . I don ' t wanna worry about when t h a t ' s gonna be. Because 50 years from now, I ' l l s i t back and say jeepers maybe I shouldn ' t have worried about that so much, jus t look at me now I'm s t i l l h e r e . ' I t ' s d i f f e r e n t , i t ' s l i k e a balancing ac t . When you ' re looking into the future umm, those l i t t l e thoughts do come to your mind. But you don' t want, don ' t wanna play i t up and draw that to be the f o c u s . " The future has become uncer ta in . "The l a s t couple of months have been d i f f i c u l t . I th ink i t ' s , ah, perhaps i t ' s a b i t of g r iev ing or jus t taking count of things that have happened. A l o t of l o s s e s . Loss of a body par t . Loss of umm c e r t a i n t y . Loss of f r i e n d s . That has happened, ce r ta in people. A t o t a l sense of loss of c o n t r o l . Loss of a job . Loss of that whole rout ine of going to your job and seeing those people, umm. Fear comes in to i t . These are things that I'm having to sor t out r i g h t now. And i t takes a l o t of energy and i t can get you down, and i t can be r e a l l y hard. . . You know t h i s i s probably one of the most d i f f i c u l t th ings I 've ever had to do. It i s the most d i f f i c u l t t h i n g , because I'm reevaluat ing my en t i re l i f e r i g h t now. There 's some things that you know are uncer ta in . " A couple of weeks ago Anne found out that her job at the h o s p i t a l had been "deleted" due to a reorganiza t ion . Current ly she i s on long term d i s a b i l i t y and therefore does not have to worry about f ind ing another job r igh t away. She i s very r e l i e v e d about not having to look for work because she i s not ready to go 82 back to work yet . She i s sure that when she i s ready to go back to work she w i l l be able to f i n d a job. "But you have to be c a r e f u l that you don' t l e t something l i k e t h i s overr ide the progress and the b u i l d i n g that you' re t r y i n g to do to get yourse l f back on t rack . It doesn' t have to be a major wrench. . . No i t ' s not good t iming. But, but on the other hand i t ' s wonderful t iming. I look at i t from that point of view as w e l l . I 've always sa id i f I was going to get cancer t h i s i s a great time to get i t , you know. The economy's unstable . At l eas t I know I have an income for the next 20, 22 months. That r e a l l y a l l e v i a t e s a l o t of the pressure to worry about, humm, my job . Somehow i t ah, i t w i l l a l l work out ." During the interviews Anne ta lked about her experience as stages that she had passed through. I asked her to t e l l me more about these stages. "Stage one was when I found the lump. And then on f ind ing the lump you s ta r t to see the doctors . . . I consider that the f i r s t stage the umm, the question stage. What i s i t , what are we deal ing with here? I th ink the second stage begins when you' re ac tua l l y t o l d that there are a t y p i c a l c e l l s , i t i s a malignant c e l l growth. That 's when the word cancer umm, i t i s cancer. . . I t i s def ined at then at that po in t . . . And then the re 's more t e s t s to be done, in terms of i s i t anywhere e l s e . Has i t spread. . . That 's very d i f f i c u l t wait ing for the r e s u l t s . . . You know you' re in t roub le , but you could be in deeper t roub le , or maybe i t ' s conf ined. So now i t ' s in stage two you' re th ink ing about okay, umm, i s i t jus t my breast? Is i t somewhere e lse? What w i l l the treatment be? W i l l there be treatment? Am I gonna die? . . . The avenue of treatment depends on what they f i n d s u r g i c a l l y . There 's another pathology report that they wait f o r . Okay? Now, perhaps t h a t ' s a substage of stage two I'm not p o s i t i v e . But i t ' s umm, because i t ' s j u s t , i t ' s l i k e a t r i a n g l e you have got the base with a l l these questions and eventual ly you' re t r y i n g to get to that point the top point where you know what i t i s , what you can do. And you s t a r t making f i n e r d e c i s i o n s . I guess c losure of stage two i s when I went back to the surgeon. We had the pathology report from the surgery, and i t was estab l ished that you know the tumour type, the s i z e , was there any lymph node involvement. Those were the c r u c i a l questions at t h i s po in t . That determined ah, the treatment. Because I had chosen mastectomy so there 'd be no rad ia t ion i n my p a r t i c u l a r case. . . When the Cancer Agency doors are open to me i s the c losure of stage two . . . Stage three i s when I walk through the Cancer Agency doors. Turn around have a good cry and go outside for a whi le . . . [The oncologist ] t e l l s you your options for treatment, and you decide whether you want to take that treatment or not . You have a cho ice . Tha t 's the b a l l going when you say yes , and take that treatment t h a t ' s where stage three r e a l l y s t a r t s to grow, when you s ta r t i n on the treatments. And within the treatments themselves i s where you get the substages. Each treatment i s a substage I found. . . That each, each time you go in there i t ' s d i f f e r e n t . The f i r s t time everyth ing 's fo re ign , you don' t know what to expect. . . So p h y s i c a l l y and emotional ly i t ' s a t o t a l l y new experience. . . This i s going to save me. I'm up for i t . L e t ' s do i t . . . And then two weeks a f te r your f i r s t treatment your h a i r s t a r t s f a l l i n g out. And t h a t ' s when I thought 'Wow, t h i s r e a l l y i s happening. ' That 's a d e f i n i t e s ign post , that you've been there and had the chemo cause your h a i r ' s f a l l i n g out. So t h e r e ' s an energy, a p o s i t i v e energy that I had. You're r e a l l y cont r ibut ing to your own heal th here you' re going through t h i s . You're going to save yourse l f with t h e i r he lp . . . Then a f te r the second treatment I s tar ted to f e e l badly . Scared. Real ly g r iev ing or hur t , that t h i s i s happening, you know. And you don' t f e e l good and r e a l l y down. . . You jus t don' t f e e l wel l p h y s i c a l l y . . . And that kinda overlapped into the t h i r d treatment, too . But I s tar ted t o , i t kinda tapered o f f emotionally then. It became rather t h i s i s what I have to do l e t ' s make the best of i t . But I found i t very d i f f i c u l t to be so t i r e d and not f e e l i n g wel l a l l the time. . . I t ' s l i k e wandering in a deser t , you know. You know that a f te r a few more treatments i t ' s going to be over but i t ' s , I guess the novelty has worn o f f by that po in t , so to speak. . . But you j u s t , you jus t t r y to be up. You t ry to have some normalcy about your l i f e . . . Then a f te r the t h i r d treatment you know that the fourth i s your l a s t , so things s t a r t to br ighten up a l i t t l e b i t . You know your h a i r w i l l s ta r t coming back. You know, you can get on with th ings . . . The [ fourth treatment] i s i n t e r e s t i n g because then you r e a l i z e wow t h i s i s my l a s t treatment now, what do I do. I have to a c t i v e l y pursue something now on my own. . . Instead of a n ice s t e e l suspension br idge over 84 to soc ie ty now i t ' s more l i k e t h i s r i cke ty o ld wood bridge were you' re going, whoa, I don' t know. I t ' s l i k e coming out from under mum's wing. We've done i t , we've given you the treatment, there you go now. And i t ' s f r ighten ing to come out from that . That 's when I th ink the evaluat ion of your l i f e , your psycholog ica l questions umm, s ta r t to come up.- A f te r the fourth treatment that focus of the phys ica l aspect of treatment, of p h y s i c a l l y being at the Agency and p h y s i c a l l y get t ing your drugs, and being monitored i s f i n i s h e d on that regular three week b a s i s . . . So now you s h i f t in to what would be stage four I guess. . . the i n s i g h t f u l stage maybe. . . You've been red i rec ted but you' re not sure where to go. The emphasis i s no longer on the p h y s i c a l . . . There 's not a brochure at the Agency of good naturopaths to go t o , or you know, vi tamin supplements. You won't f i n d that . That 's up to you. I t ' s l i k e , i t ' s almost l i k e growing up again you know. I t ' s a rea l growth per iod . So you have to do that . Then on top of that which i s the physicalness of taking care of y o u r s e l f , umm, then you get into the psychologica l care that you require as w e l l . In you know deal ing with things that you haven't deal t with before . Looking ahead you know what do I want out of l i f e , what i s important to me now, a f te r a l l t h i s , what matters. And t h a t ' s a r e a l l y p a i n f u l exerc ise . And I th ink t h i s i s the stage that I 've been in for the l a s t couple of months, you know, post- t reatment ." During the process of d iagnosis and treatment Anne kept in touch with people from work and her f r i e n d s . She a lso met and ta lked to a number of other women with breast cancer at the Cancer Agency, which she found h e l p f u l . "Because although your f r iends and your family are wonderful and support ive i t sure i s d i f f e r e n t t a l k i n g to someone who has ac tua l l y experienced t h i s s i t u a t i o n . 1 1 During t h i s time Anne spent a l o t of time with two f r iends in p a r t i c u l a r . I t turned out one of these f r iends she no longer sees. The r e l a t i o n s h i p jus t " d i s s o l v e d " . Anne th inks t h i s f r i end never had the capaci ty to r e a l i z e what happened to her , 85 and Anne does not want that in her l i f e . On the other hand Anne found there were a number of re la t ionsh ips that have grown during her experience. Anne described a pattern of what happened with f r iends and col leagues. "There was a l o t of people around. Eventual ly that concern, maybe not the concern i t s e l f but the c a l l s and that , s t a r t to slow down, r e a l i z i n g that , that people have t h e i r own l i v e s . I t ' s the same as the death of a spouse, or something you know how people f lock around for a ce r ta in per iod of time and then a f te r that , the c a l l s a ren ' t as frequent, the v i s i t s a ren ' t as frequent. But, maybe t h a t ' s okay I th ink , because, i t co inc ides with the per iod when you s t a r t to ask a l o t of quest ions. And maybe that allows you to be honest and ask yourse l f a l o t of quest ions, because you are not d i s t r a c t e d with v i s i t s and going out. I t g ives you some more quiet time to dedicate towards y o u r s e l f . " We continued to t a l k about the staging of her experience. Anne ta lked more about stage four , where she i s now. "Now t h e r e ' s t h i s , r e - d i r e c t i v e or growth per iod . Eva luat ion . As one woman s a i d , 'Taking stock of the s i t u a t i o n and what's happened.' And t h a t ' s so t rue , I l i k e that . Taking stock of what's happened. Try to put i t in to p e r s p e c t i v e . . . I 've had a rea l hesitancy about going to see my fami ly . . . So anyway I b i t the b u l l e t and I 've got my t i c k e t and going back. So t h a t ' s kinda n i c e . Tha t 's been a major dec is ion that I 've had to make or I 've wanted to make and I wasn't able to make i t for some reason. This t r i p to me i s a form of c l o s u r e . In terms of going back seeing my fami ly . Talking, about t h i s experience with them, t h e r e ' l l be a l o t of t a l k . I t ' s kinda l i k e the cancer t r i p , you know, (laughs) Because I haven't seen them I haven't seen anybody except my . . . my mum and my s i s t e r in a year. . . So I th ink i n going back home, and t a l k i n g to my fami ly , and knowing that , that they ' re s t i l l there and t h e i r l i f e i s going on. And I'm b a s i c a l l y the same person I was. I t ' s a n ice package d e a l . Go back and t a l k about i t . . . And in doing so I ' l l be able jus t to - to make some d e c i s i o n s . I 've got a l o t of dec is ions to make and I don ' t f e e l that I can make them r i g h t now and I th ink t h a t ' s because i t ' s 86 i t ' s k inda, c losed in or something. The area i s blanketed with what has happened over the l a s t year or so , and I need to be able to get out from underneath that blanket . So I'm looking forward to i t . . . I'm th ink ing w i l l be the end of stage i s i t four we're at now I th ink so . . . the end of stage four i s the c l o s u r e . And in doing that and in ty ing up a l l these ends, I can put i t put the experience in the past . I ' l l never' forget i t , you know. But you put i t behind you to some degree and you move on, you know, with the future . Moving on your new l i f e , you know." I asked Anne i f t h i s was going 'back to normal' a phrase she had used e a r l i e r i n our d i s c u s s i o n . "I don' t th ink I should have used that choice of words. I don' t l i k e that word 'norma l ' , back to normal. What's normal? . . . i t ' s not r e a l l y going back to normal because you can never go back to what you were before t h i s happened, I don ' t th ink . . . Perhaps what i t i s , i s that , your l i f e doesn' t revolve around the cancer now. Instead the cancer i s a part of your l i f e . The cancer and the experience i s a component of your whole l i f e . You know pre , p e r i and post . . . P lac ing i t i n that part of your l i f e , where i t i s , where i t w i l l always be. And every year when you go for your check up you go back to that l i t t l e par t , of your l i f e . But i t ' s not the focus of your l i f e any more. . . But the goal of t h i s focus and t h i s reevaluat ion and r e d i r e c t i o n i s to be able to put i t i n i t ' s proper perspect ive so that you can get on and l i v e your l i f e u n t i l you d i e . . . And not be preoccupied with i t a l l the t ime. . . I t ' s very d i f f i c u l t , I have found i t very d i f f i c u l t . But I f e e l changes and I f e e l that there w i l l be a reso lu t ion of i t and I ' l l f i n d i t ' s proper place and I w i l l tuck i t in my heart and in my mind and. And I don ' t have to dwell on i t . There 's no point in doing that because you ' re going to miss out on your l i f e . I have to focus on the future . Rea l ize you know what's important, what do I want out of my l i f e now, and go for i t . Deal with the day to day th ings that come up l i k e a job loss or whatever i t might be. By no means you' re going to l i v e a flowery l i t t l e l i f e from now on you know, t h e r e ' s r e a l i t y . I t ' s a r e a l i t y check, you know. I t ' s l i k e a , i t ' s almost l i k e a confrontat ion in a way. My r e a l i t y now. What am I 87 going to do with i t . What's important. How do I get on with my l i f e . And where do I put t h i s cancer. Knowing that i t ' s been a ca ta lys t fo r such growth. . . That 's neat because I 've been wondering and I haven't ever quite been able to put i t in to words and now I d i d . I f e e l good." Anne's experience with cancer has changed her l i f e forever , not only in the present but a lso for the future . "I don ' t l i k e the word ' c u r e ' . Because, I don ' t know, there i s no cure. They say ' r e m i s s i o n ' . Well that sounds l i k e , yeah, i t ' s gonna come back. Words, you s t a r t to not ice words a l o t , expressions that people use. The res t of my l i f e , I'm going to l i v e here the res t of my l i f e . Wel l , w e ' l l see. Yeah cancer i s very d i f f e r e n t in that respect . That 's another part of the c losure and the coming to terms with i t , how are you going to look at t h i s . Are you going to look at i t from the point of view that , yeah, i t ' s going to come back i t ' s jus t a matter of t ime. Or do you look at i t from the point of view that , I 've got t h i s th ing beat, and I'm gonna get on with my l i f e , I 've got i t beat. Even when you say that t h e r e ' s that l i t t l e th ing of doubt that pops in too. But there i s no c e r t a i n t y , you know." I again asked Anne to t a l k about what she thinks may cause cancer and more p a r t i c u l a r l y what she thinks may have caused her cancer. "Why I got i t , I'm not sure. I look at my l i f e previous to i t and the l a s t , probably the l a s t three to f i v e years were very s t r e s s f u l . A l o t of major changes. Just a r e a l l y d i f f i c u l t , sad sor t of t ime. Persona l ly , you know, things that were going on. And then I s tar ted to change about, you know, I changed some things in my l i f e and wi th in a year bang there was the lump. Just when I f e l t great . I thought that I was doing very w e l l . And I look back now, and I have to wonder i f there was a l o t of den ia l or something going on there . . . I th ink what I was doing wel l a t , were not important i s s u e s . I wasn't concentrat ing on the bigger p i c t u r e . So I, I have to wonder you know, they say that the tumour may have been there eight to ten years . But I wonder how I could have missed a lump that s i z e . And I must ask my oncologis t about that on Wednesday you know could t h i s have come on quick, or d id I jus t miss i t . I don ' t know. 88 So, you know we don' t know, or i s i t jus t a p h y s i o l o g i c a l change in your body, but what brought i t about you know. I have my own, kind of , t h e r e ' s some coincidences I guess that I wonder about in terms of changing my l i f e and, umm, you know, get t ing r i d of some bad h a b i t s . A c t u a l l y , i t ' s strange because, I f e e l that I can say t h i s , i t was 13 months from the time that I had decided not to dr ink any more to when I found the tumour. And I o f ten , so in that 13 month per iod I was deal ing with t h i s change and a r e l a t i o n s h i p that had f a l l e n apart . And as I s a i d , I thought I had i t together, but I don' t th ink I had i t together at a l l . I th ink I was stressed to the max. A f te r a l l the crap i t was l i k e a year of t o t a l absolute s t r e s s . Pure s t r e s s . And i t wasn't the type of s t ress where you say, 'oh geez I gotta do t h i s and I gotta do tha t ' or you ' re worried about an exam and something a work i s bothering you. I t ' s a higher l e v e l of s t r e s s . In terms of mental p a i n . " I asked Anne how the complimentary therapies that she i s now inves t iga t ing f i t in to her experience. "There are some bas ic threads l i k e the As iac or the f lo rescence , these are herbal teas . In terms of umm you know, immune st imulants , immune boosters . . . Some theor ies or t r a i n of thought on t h i s i s that your immune system has been compromised and that allowed you to develop the cancer. In that we a l l have cancer c e l l s . But i f your immune system i s compromised i t -the c e l l s mul t ip ly and you end up with mal ignancies. . So one theory being now you know i f you take supplements a f te r your chemo or a f te r your treatment i s to boost get your immune system kicked r i g h t i n , and boosted i t up, and then keep a maintenance program. Where i t ' s being st imulated or maintained for^ you know prevention of reoccurrence. . . L ike the C, E the ant i -ox idants that they t a l k about now in terms of , breaking down and being able to get r i d of carcinogens that you take in through the environment and the food you eat . And umm, I watch my d ie t you know. I t r y to eat , I t r y to eat your greens, your raw f r u i t s and your raw vegetables. They c a l l them l i v e greens because they ' re a l i v e , you know. And you eat them and you take the energy that they have from the sun and put i t in to your Vitamins C and E. 89 own body. I t ' s an natural sor t of energy. . . So in put t ing these, these foodstuf fs into you. In comparison to eat ing you know McDonald's, and a l o t o f , you know, fa t ty meats and things l i k e t h i s . My l i n e of th ink ing i s w e l l , i t ' s a l i v e , and i t has energies in i t . I f you put that into your body that can only be s t imulat ing for you. Healthy fo r you. There 's no way of avoiding the contaminants in our environment, they ' re everywhere. But I th ink i f you are sens ib le about what you eat , I mean there has to be a connection there as w e l l . In terms of disease and our unhealthy s o c i e t y , you know our d ie tary h a b i t s , smoking and d r ink ing , our excesses. . . So you have to do what fee ls r igh t for you. I f I be l ieve t h i s , there i s a placebo e f f e c t . There i s that mind-body connection somehow. I don ' t th ink we've tapped into i t . In my opinion the re 's a great awesome lov ing energy out there and we have to grab hold of i t , and we have to br ing that in to our l i v e s . . . These are avenues that I'm th ink ing of and I often thought of even before t h i s happened. I knew there had to be a bigger p i c t u r e . " At the end of the t h i r d interview Anne t o l d me a story about how one day she was walking behind some men. She over-heard them t a l k i n g about a f r i end who had bone cancer. " I t ' s i n t e r e s t i n g no matter where you go, there i s some evidence of cancer somewhere." The fourth interview was in the middle of August. Anne had been away on ho l iday , v i s i t i n g with her fami ly . I asked Anne about her t r i p . "I came back with, ah, sor t of a d i f f e r e n t view of , you know, family i s there. In terms of , I guess I f e e l I 've grown up a l o t , you know. L i k e , (pause) i t was d i f f e r e n t and, you know, I r e a l l y haven't been able to p inpoint i t , I'm s t i l l kinda th ink ing about i t . But i t c e r t a i n l y was good to connect with the fami ly , and spend time with my mum and dad. And that was n i c e . Although as I sa id I found i t hard sometimes. But maybe t h a t ' s jus t because ah, umm, I don ' t know. Maybe i t ' s always been l i k e that too , you know going back to v i s i t . " I asked i f she ta lked about her experience with cancer with her family? "Umm, no, not r e a l l y . That was kinda i n t e r e s t i n g , umm, not in any depth. Umm, (pause) and, wel l i t depends, I ta lked with my brother , qui te a b i t about i t j us t because of the mor ta l i ty t h i n g . And umm, death and God, and t h i s sor t of th ing 'cause he 's got qui te a f a i t h . So we spoke about that a l o t , with him. Umm, and with my other s i s t e r of course we're always very c lose t a l k i n g about th ings , but with the other s i s t e r i t d i d n ' t r e a l l y come up. I don' t know that she 's comfortable with i t , or something, so we r e a l l y d i d n ' t t a l k about i t too much. And I r e a l l y d i d n ' t know that I was r e a l l y up to t a l k i n g about i t a l l the time, I mean, you know, what's done i s done. L e t ' s get on here. With my fo lks we discussed i t a b i t , but we d i d n ' t go into any great d e t a i l s . So that was kinda i n t e r e s t i n g , you know. I d i d n ' t know how i t would go. And ah, my aunt and uncle who came up, umm, jus t fo r a day, had asked my s i s t e r , you know, 'Well what do we say to her? How do you t a l k to her, now?' They d i d n ' t know how to deal with me. They d i d n ' t know what to expect. So they asked Kathy's advice on what should you say, or not say. She jus t t o l d them, 'Be yourselves. Treat her l i k e you've always t reated her , t h e r e ' s nothing, you don' t make s p e c i a l conversations and s t u f f l i k e that , you know.' So i t was i n t e r e s t i n g to see the react ions of people. Some people would jump r i g h t i n , and want to know cer ta in th ings , and other people i t would never come up. Like the experience would never come up. And i t was very black and white, i n that respect . . . And I t r i e d a few th ings , l i k e I would br ing something up, or umm, jus t to see what t h e i r react ion would be, and, and I th ink i t made some people uncomfortable some of the time. Like to say the word ' c a n c e r ' , I mean some people, some people won't say that word. . . we'd be t a l k i n g about somebody e lse that , you know, they knew who'd jus t d ied and jus t in conversat ion and that , and somebody that was going through treatment, or something that they knew, but , the, the disease i t s e l f would never be spoken of . So f i n a l l y one day there was a conversat ion going on, and I s a i d , 'Oh, wel l yeah he has cancer, you know you can say i t . I t ' s okay. ' (laughter) Yeah, so there was no middle road there i t was r e a l l y i n t e r e s t i n g . I t was e i t h e r , yeah w e ' l l say i t and t a l k about i t , o r , no, we, we don' t d iscuss i t . So, so that was kinda neat. Kathy i s a pseudonym. 91 And I can go e i ther way, I'm pret ty f l e x i b l e about t h i n g s . " Anne had been home from her v i s i t with her family for about three weeks. She sa id when she f i r s t got back she f e l t a l i t t l e depressed. Anne f e e l s she s t i l l has a number of things to work through, and needs some time to think about what has happened. I asked her what she had been doing s ince she got back from her v i s i t with her fami ly . She sa id she 'd been explor ing the job s i t u a t i o n . I asked how that was going. "Oh, the re 's not too much happening out there fo r f u l l time jobs . Most places they e i ther a ren ' t accepting a p p l i c a t i o n s , or i f they are accepting app l ica t ions i t ' s jus t for a casual b a s i s , and i t ' s not in my area, anyway. And I don ' t th ink the chances of get t ing back on where I was are very good, from what I understand. So t h a t ' s kind of a burden r igh t now too. I'm t r y i n g to decide, 'What am I going to do?' I don ' t p a r t i c u l a r l y want to spend much longer on d i s a b i l i t y . The days s t a r t to get long. I need tasks , I'm a task-or iented person, type of t h i n g . I t ' s n ice to have an afternoon to s i t around and read once in a whi le , or whatever, but not to have these blocks of time on your hands. . . I t ' s been okay, but I do f e e l i t ' s time to get back into the swing of th ings . Even i f i t i s jus t a graduated program." I asked Anne how her heal th has been s ince we l a s t t a l k e d . "Other than that [down per iod a f te r she came home] I'm f e e l i n g good. Yeah. You know, and umm, t r y i n g to cont ro l my mind at t imes, so that , so that your thoughts so you don' t get dwel l ing on th ings , l i k e dwel l ing t o t a l l y on the job s i t u a t i o n . Because that can get you down. You have to be able to stand back and say okay, wel l something w i l l m a t e r i a l i z e , you know, have f a i t h in that . Don't l e t i t overwhelm you because y o u ' l l be taken care of anyways with the d i s a b i l i t y . I t ' s not that I have to have a job because I have no income thank goodness I do have that insurance. But i t ' s i n t e r e s t i n g , umm, I thought about doing some volunteer work a c t u a l l y . And I thought about the Agency, and I decided against i t . Because i t ' s s t i l l too c l o s e . You know, i t ' s only been a year s ince t h i s whole t h i n g ' s been going on. And as wel l t h e r e ' r e women in the community that , that I'm in touch with 92 that have had medical c r i s e s e i t h e r , ah, scared recurrence, or umm, poss ib ly something going on ins ide of them in terms of nodes that have appeared, and t h i s sor t of t h i n g . And, even l i k e when you watch the news and, you know, somebody d i e s , a movie s tar or something, they always say, i f i t ' s cancer they died from they always say that . So, i t ' s , i t ' s , I don ' t know, and I f i n d i t hard at t h i s stage to l i s t e n to i t . And I th ink i t ' s , again, i t ' s maybe i t ' s jus t too f resh for me, and I don ' t f e e l , you know, 110 percent conf ident about the s i t u a t i o n yet , and as time goes on and you develop a conf idence, I th ink . But r igh t now i t ' s s t i l l so new. You know, often times i f somebody's t e l l i n g me something I don ' t want to hear i t . I don' t want to hear about the recurrence or that somebody's d i e d , or t h i s and that . So I 've decided jus t to back away for a whi le , and give myself t ime, so I won't be doing any volunteer work there. You know, and I th ink t h a t ' s a s e l f preservat ion t a c t i c as w e l l . I t ' s an i n d i v i d u a l cho ice . But for myself why would I want to put myself through that day a f te r day, or whatever, l i s t e n i n g to t h i s sor t of th ing . Because inev i tab ly I mean i t , i t t r i g g e r s l i t t l e thoughts in you own mind. So in time I would l i k e , umm, to be involved but I don ' t th ink r i g h t now i s a good t ime." I asked Anne i f her experience with cancer was s t i l l very c l o s e . "In some ways, yeah. In other ways I f e e l that i t ' s , i t ' s d is tanc ing i t s e l f . Wel l , I can say that , r igh t now you know I 've, i t ' s been a year . So t h a t ' s good. There 's another year under my b e l t , t h a t ' s good, that makes me f e e l good. So those are p o s i t i v e mi lestones, I th ink . P o s i t i v e things that are happening, umm. And t h a t ' s good. But i t ' s , i t ' s , but I guess i t ' s s t i l l c lose i n the sense that umm, t h a t ' s easy to deal with r e a l i z i n g that you've come t h i s f a r . But i t ' s , you know, but , but when you s t a r t to hear about somebody you know who's being checked out fo r something, or they ' re having medical problems, umm. Then automat ical ly the s i t u a t i o n i s brought into your lap again, and you th ink , 'Gee I wonder i f , t h i s i s going to happen to me?' So I th ink in that , i n that s i t u a t i o n , i n those s i t u a t i o n s , the re 's s t i l l some heal ing time needed so that you' re able to get over that hurdle and say, 'We l l , every case i s d i f f e r e n t . This i s n ' t going to happen to me.' I can say that to myself but i t ' s s t i l l shaky ground, you know. Like my legs are s t i l l a 93 l i t t l e b i t wobbly to be, umm, yeah. But as I sa id i t ' s been a year and, and t h a t ' s good, s o . " I asked Anne i f she had ac tua l l y marked the date that one year was up. "Yeah, wel l i t was important for me to recognize i t , you know. Because, the date that I a c t u a l l y found my lump, was, you know, when t h i s whole th ing s t a r t e d . So the re 's that date, and t h e r e ' s the date that you went in and had the t e s t s done. And then the re 's the date you were t o l d yes you do have cancer. And then t h e r e ' s the date that you had your surgery. And then when you star ted your chemo, when you f i n i s h e d your chemo, the stages that we ta lked about e a r l i e r . Umm, so I don ' t , I d o n ' t , I mean, I don ' t ce lebrate a l l these dates, but i t ' s i n the back of my mind and perhaps in time t h e y ' l l be jus t one or two days that y o u ' l l remember more. You know when I look back over the year , I th ink , wow, l i k e l a s t year at t h i s time I was, you ' re f r a n t i c , you don' t have any answers, you don' t know. At l eas t t h i s way, now I know what the s i t u a t i o n i s . " Continuing to t a l k about the passage of t ime, I asked Anne to t a l k about the stages she had discussed i n the previous interviews. I asked i f she was current ly s t i l l in stage four , or i f she had moved to a d i f f e r e n t stage. " I 've moved into a d i f f e r e n t stage now. From probably a f te r treatment u n t i l , ooh, Mayish, J u n i s h , before I went home, and ac tua l l y I had a hard time making a dec is ion to go home because I was in the next stage where I was deal ing with a l o t of anger, and umm, rage. Not quite sure who to d i r e c t i t a t , (laughter) or ah, ah, i t ' s r e a l l y an in te rna l t h i n g . I guess I was mad because I, I had had cancer, and I was mad at God f o r , not quest ioning him as to why d id t h i s happened to me, but wanting to know the purpose of i t , and not having any answers in that respect . And jus t the uncerta inty of everything. So there was a l o t of rage. And I was sharing a place at the time and i t r e a l l y wasn't working out that w e l l . Umm, I j us t f e l t blown apart . And very sad, as w e l l . A combination of rage and sadness, you know, i t was qui te a dark t ime. Umm, I guess t h i s i s quite common. The per iod a f te r treatment, you ' re done your treatments, and you' re l e f t to p ick up the pieces now. There 's not r e a l l y any, i n my p a r t i c u l a r case t h e r e ' s no rea l d e f i n i t i o n of what I should be doing now, because I don ' t have a job . So i t ' s not l i k e I have something that I can say, ' W e l l , I'm ready to go back to my job now.' You don' t have that to go back too, t h a t ' s jus t another s t ressor . . . Yeah, i n e f f e c t loos ing my job was a great l o s s . Because i t means that I don' t have that f a m i l i a r s e t t i n g to go back to now. I don' t know where I'm going to go and I don ' t know what I'm going to be doing. So that secur i ty that you could return to and get on with th ings , because you know the people and you know your work, i t ' s not there. I don ' t know who I'm going to be working with now, and I don ' t know what I'm going to be doing. And I was mad as h e l l that I l o s t my job. That stage has been, I guess deal ing with umm, the r e a l i t y of , of get t ing on with th ings . Returning t o , to work and ah, and emotionally i t ' s been jus t a r o l l e r coaster for me. I f e e l i t ' s somewhat l e v e l l i n g out now, even the t r i p was, was i t was very t i r i n g , i t was hard, l i k e emotional ly . 'cause I wasn't qui te sure of my new i d e n t i t y . I was sure pre t ty much wi th in myself , but then umm, I guess i t ' s so easy t o , to be someone you ' re not , or something. I t was i n t e r e s t i n g . Just in terms of looking at the s i t u a t i o n from my point of view now, 'cause I 've had the brush with the d isease , and so I can see things from my point of view now and j u s t i f y them. I guess t h e r e ' s a j u s t i f i c a t i o n per iod , I don ' t know, (laughter) Yeah, so, I guess the t r i p , i t d id s a t i s f y a few things in my mind, yeah. And i t ' s given me a c l a r i t y about ce r ta in things in my l i f e now and which d i r e c t i o n s I 'd l i k e to take. I th ink the t r i p umm, f i n a l i z e d the rage stage. Yeah. Now I'm in more t o , think I'm somewhat calmer. You know, s t i l l looking for answers, a few answers anyway, but I'm a l i t t l e b i t calmer. Because I don ' t have that rage. And that rage was so d i f f i c u l t to deal wi th. Where do you put i t ? I'm a lso going t o , umm, I th ink , l i n k up with umm. I don' t belong to a church, I don ' t have a church, but I 'd l i k e to l i n k up with some, you know, s p i r i t u a l adv isors , or somebody that knows the b i b l e and t h i s sor t of t h i n g . Because I have some quest ions. You know, and t h i s has been, and t h i s has r e a l l y brought c lose to home some questions in terms of , of my f a i t h . So I 'd jus t l i k e some answers and I th ink the best th ing to do i s jus t to go to the source b a s i c a l l y . . . So t h a t ' s what I ' l l do as w e l l . So job and jus t c l a r i f y i n g a few things in my mind, and ah. I th ink i t w i l l be an e x c i t i n g time and I'm kinda looking forward to i t . " 95 I asked Anne how her inves t iga t ion of complementary therapies was going. "I haven't spent any time inves t iga t ing any of i t , at t h i s po in t , fur ther inves t iga t ion anyway. I'm s t i l l j us t doing the supplement rout ine , you know, with my meals. And I s t i l l watch what I - I eat , I t r y to eat be t te r , umm. But t h a t ' s hard when you are t r a v e l l i n g too. . . But no, I haven ' t , I haven't looked at anything e lse at t h i s point in t ime. It kinda goes in f i t s and s t a r t s too , you know. You get a sense of when the time i s r igh t to pursue that . To elaborate on that a l i t t l e b i t more." Anne has been r e e s t a b l i s h i n g contact with o ld f r iends s ince she came back from her vacat ion . This has been very n i c e . She f inds get t ing in touch with people "grounds you a l i t t l e b i t " . I t o l d Anne that I d id not have any more questions and asked i f she had anything she wanted to add. There was a long pause. "On my t r i p , and on my way back, I kept hearing a song on the rad io , or where ever I was. And i t ' s an o ld Supertramp song and I use t o , I remember when I was i n my ear ly 2 0 ' s I bought t h i s album and I always loved t h i s song. But I could never qui te understand i t . So I heard t h i s song a number of times on my t r i p , and the song was 'Take the Long Way Home'. And I thought, perhaps in some ways t h a t ' s what I'm doing, or t h a t ' s what I 've, or t h a t ' s what my l i f e i s , you know. Finding the home within myself . Doing i t i n a rather round, or broad way, you know in terms of going through t h i s d isease , and then having to look at your l i f e and eva luat ion , and f ind ing out what you ' re going to do. The long journey." I wondered i f she saw t h i s journey as having an end point in the future . "I th ink i t w i l l . Not a t o t a l end, but i t won't be, i t w i l l be more of a, ah, a po in t , l i k e . Right now, and up to t h i s point my whole l i f e has been encompassed with t h i s d isease . So, as you move on and s e t t l e some things in your l i f e , and come to some understandings I th ink i t reaches a point where i t ' s jus t a re f ined percept ion of what's happened. And y o u ' l l always have that with you, and you can always draw on i t , but i t ' s not as a l l consuming as i t has been. There 's a place for i t in your l i f e , but i t ' s not the major focus of your l i f e . I t ' s jus t an awesome experience to go through. Like a great t r i p , around the world t r i p or something. I t ' s that sor t of t h i n g . " I asked Anne where the cancer was now in her l i f e . "Umm, I guess I 'd have to say I f e e l that i t ' s , i t ' s kinda mid-point r i g h t now. Although I have days where i t ' s more, ah, more r i g h t , ah, kinda in my face , other days i t ' s not. Umm, yeah I'm not quite sure. . . A l i t t l e more recessed, in my mind. I th ink some of i t i s a conscious e f f o r t t o , umm, to allow i t , to allow yourse l f to l e t i t go. And not, to prevent yourse l f from hanging on to i t a l l the t ime. Because I th ink , I th ink i t ' s a very good p o s s i b i l i t y that , that could happen, where y o u ' r e , you ' re jus t c l i n g i n g to i t . The disease i t s e l f might represent a sense of secur i ty to you. You know, I don ' t want that . I don' t want i t to become something that I need. I don' t want that . I want t o , to l e t i t go, to put i t in that l i t t l e compartment. You know I can tap into i t and help people and learn from i t and allow myself bad days when i t sneaks forward. But I don ' t want i t to be there a l l the t ime. So, I guess i t does, perhaps i t takes some conscious e f f o r t . But I th ink t h a t ' s when you get i n t o , to coming t o , to dec is ions about your l i f e . I mean i f everything i s up in the a i r r igh t now in terms of job and money coming i n , and future , and that , i t ' s unnerving, so i t ' s easy to equate that sense of being worried and br ing ing the cancer again, so you've got everything to worry about. Okay, whereas once things s t a r t to develop in my l i f e now, and I get on with i t . Then t h e r e ' l l be other things for me to focus on, and to put my energy i n t o . The cancer experience w i l l always be here, but i t doesn' t have to come along with everything I do now. I don' t know how I would have, I don ' t know where I would be r igh t now, i f I had my job to go back t o . The s i t u a t i o n , I th ink would be qui te a b i t d i f f e r e n t . . . Because I could get things moving f a s t e r . And there would be a calmness in knowing I'm be going back to people I enjoy working with and the job that I l i k e , you see. So, although you' re nervous maybe about going back to work, you know, you get a l i t t l e gun shy now, because you've been out of i t for a year and you hope your s k i l l s are up, umm, a l i t t l e b i t l e s s conf ident than I was a year ago, you know. L i t t l e b i t insecure in my s k i l l s and jus t knowing, that , I know I can do i t , but jumping in again, you know, get t ing your feet wet again i s kinda scary . And now I don ' t know where I'm going to be doing i t , or i f I w i l l be doing i t . So that s e c u r i t y ' s gone. 97 But you know maybe i t ' s jus t another r e d i r e c t i o n , the disease d id i t t o t a l l y red i rec ted my l i f e . A l o t of good has come from i t . So maybe i t ' s time to umm, have a look at some other options in terms of what I want to do, job wise. And w e ' l l see what happens. It should be i n t e r e s t i n g . Very i n t e r e s t i n g . But I f e e l that things w i l l work out, I th ink , i t w i l l be okay." At t h i s point I stopped recording our conversat ion. We ta lked for a l i t t l e while and then sa id good-bye. B. Rebecca Rebecca's story s t a r t s in much the same way as Anne 's . One main d i f fe rence between them i s that Rebecca had been prev ious ly diagnosed with Parkinson's d isease . This introduces complicat ions and f r u s t r a t i o n s into her story of d iagnosis and treatment. Another main d i f fe rence i s the way Rebecca t a l k s about the p o s i t i o n of the cancer in her d a i l y l i f e . The predominant feature of t h i s i s that Rebecca descr ibes the cancer as being the endpoint in her l i f e , the conclusion of her s tory . She does not use the cancer as a point of reeva luat ion , but as a point of contemplation. This i s a schema shared by other p a r t i c i p a n t s . Rebecca i s unusual in that she does not develop a personal r i s k p r o f i l e , as she i s not in terested in what may have caused her cancer. Rebecca i s in her l a te 40 's . She i s a p ro fess iona l woman, with a post-graduate degree. She was diagnosed with breast cancer about ten months p r i o r to our f i r s t interview. She p a r t i c i p a t e d in two interv iews, one in May and one in June 1994. Both the interviews were done in the l i v i n g room of my home. 98 Rebecca i s in terested in the socio logy of medicine and has read in the area. This in te res t was one of the reasons she volunteered to p a r t i c i p a t e in t h i s research. As we star ted the f i r s t interview Rebecca asked to s i t i n the corner of the sofa so she could use the arm r e s t . She explained she had Park inson 's , and one arm was qui te weak and she l i k e d to s i t with i t supported. The f i r s t interview star ted with me asking Rebecca when she was diagnosed and what happened. Rebecca s tar ted by saying "It was a very unexpected f ind ing out . " Rebecca had been for a regular check up with her family doctor in June 1993. The doctor found a lump in Rebecca's l e f t breast , and sent her for a mammogram and a needle a s p i r a t i o n . A f te r having the mammogram the r a d i o l o g i s t f e l t there was no problem, but suggested Rebecca should have an ul trasound jus t to be sure. "In the procedure for the ultrasound she d i d n ' t f i n d anything where my family doctor thought there was something, but she d id f i n d something on the other s ide and she c a l l e d i t a mass. I'm always in terested in sor t of the terms that people use here but she c a l l e d i t a 'mass ' . And she knew i t wasn't a cyst so she thought i t was worthy of a p a t h o l o g i s t ' s look . " The r a d i o l o g i s t gave Rebecca two opt ions. She could come back for a needle a s p i r a t i o n e i ther on the fo l lowing Monday or in s i x months. "The term mass has c e r t a i n ominous overtones, probably unnecessar i ly so , but anyway I chose the Monday." A f t e r the needle asp i ra t ion Rebecca had to wait fo r the r e s u l t s . "And a week, a week's wait l a t e r . Which was, I th ink i t was a fasc ina t ing week because i t was a l o t of t a l k i n g with f r i e n d s , and a l o t of dea l ing with wait ing 99 and anxiety, and I read a l o t of mater ia l during that week. I th ink in terms of , umm, preparat ion for whatever, I f e l t i t gave me a l i t t l e more f e e l i n g of c o n t r o l . And, umm, and I b a s i c a l l y be l ieved everything would be f i n e , because I d i d n ' t see any reason to th ink otherwise. So a week l a t e r i t was determined that in fac t i t was cancer, and the, ah, the next step was to have an operat ion to determine whether i t had spread to the lymph nodes. So t h a t ' s , in my mind that was the f i r s t glimpse into the world of breast cancer ." I asked Rebecca how she came to the understanding that nothing was wrong. "Wel l , I th ink i t was a combination of general o r ien ta t ion to l i f e , and I th ink more to l i f e than to s o c i e t y . And ah, which for me has always, always been an attempt to view myself as one part of human k ind , one of many, but unique in my own way, my own c e l l u l a r way, or own emotional way . . . I wanted to combine a umm, f e e l i n g of uniqueness given that I was in that circumstance with a f e e l i n g of being one of many. And the one of many I th ink f e l l in to the category of reading, and, ah, the uniqueness f e l l in to the category of t a l k i n g with f r i e n d s . And what my, my mind was t e l l i n g me which was, don ' t worry about something that you haven't the fac ts about." Despite t h i s understanding that nothing was wrong, Rebecca was deal ing with a l o t of anxiety . "It was deal ing with i t , i t was l i k e i t was a v o l l e y b a l l or something. The anxiety , no there was no attempt to r i d myself of i t , but to deal with i t i n someway." It was J u l y by the time Rebecca learned the r e s u l t s of the mammogram from the r a d i o l o g i s t . Then i t was a matter of f ind ing a surgeon. Rebecca's family doctor was on hol iday for J u l y and August, but that was not a problem. Her family d o c t o r ' s replacement re fer red her to a surgeon her family doctor had on Rebecca went to see the surgeon. "So that was to me, a l s o , 100 a step in to another r e a l i t y . " At t h i s point she s t i l l d id not f e e l any undue anxiety . "I know I used the term 'adventure' with somebody and they were quite surpr ised , because I th ink there was a p o s i t i v e overtone to the term adventure. But i t wasn't to me, i t was more jus t these were unexpected turns in l i f e , and I r e a l l y be l ieve that and you deal with i t in some way and t h a t ' s the adventure. So, and knew I had a l o t to l ea rn . When I th ink back on i t I th ink 'oh how naive to even say something l i k e t h a t , ' because i t was r e a l l y jus t the t i p of the iceberg , because I th ink i t was contacts with other people who had been through t h e i r own experiences that I had found the most va luab le , and were rea l ins igh t could be ga ined." When Rebecca went to see the surgeon her husband N e i l came with her . She had to d iscuss with the surgeon the impl ica t ions of the surgery for her Park inson 's . A date was set fo r the surgery. At that point Rebecca f e l t again 1 1 . . . i t was another world to step i n t o . " I t had been many years s ince Rebecca had l a s t been in h o s p i t a l . She had l o t s of support from her f r iends and her fami ly . Her s i s t e r who l i v e d in the United States t r a v e l l e d up to Vancouver to be with her. "It makes i t sound l i k e a par ty . But i t r e a l l y wasn't , but i t was in some ways. I th ink I found in that other people c lose to me were r e a l l y enter ing in to i t , and people who were not c lose to me were more sending me cards. That always fascinated me about people 's response to what happened. And my peers who a lso have Park inson 's , which was diagnosed three years ago, were support ive in t h e i r own way because they knew the d i f f i c u l t y in dea l ing with a chronic and d e b i l i t a t i n g i l l n e s s that won't go away. And s ince cancer won't go away there, I th ink , there were some s i m i l a r i t i e s in some respects . At that point . . . what I was hoping for medical ly speaking was that there would be no spread, and . . . I would be able to dispense with chemotherapy and other things that would be p o t e n t i a l l y d e b i l i t a t i n g . " 101 While she was wait ing for her surgery she wrote poetry. Rebecca had never wr i t ten poetry before , and f e l t that some of the poems were r e a l l y very good. "I r e a l i z e d that as s o c i a l beings, we're such s o c i a l beings, but in that s i t u a t i o n i t ' s so l o n e l y . It i s r e a l l y lone ly . And no matter how many f r iends i t s t i l l comes down to the e x i s t e n t i a l dilemma. . . I don' t know why because, I suppose because i t was my body, and my l i f e , and my l i f e as part of other people 's l i v e s , but i t was a lso jus t mine and so i t was a ce r ta in sense of being fragmented maybe." Before her surgery the surgeon v i s i t e d Rebecca. He asked her i f she would mind i f her surgery was delayed for an hour. The surgeon wanted to move another pa t ien t , an o lder woman who was extremely anxious, ahead of Rebecca. "Part of me thought how does he see me that he would say that t h i s e l d e r l y woman should bump me in l i n e and yet part of me f e l t i f I were 90 going through t h i s I would be anxious. It was i n t e r e s t i n g . . . I f e l t I cou ldn ' t say no, what am I supposed to say?" The extra wait was d i f f i c u l t . Rebecca d id not want to have any drugs before going to the operating room, so she could t a l k to the surgeon. She described the operating theatres as " c a t t l e s t a l l s " with the pat ients being put into the s t a l l s . The e f f e c t was they " f i t the pieces into place and make i t f e e l mundane and not s p e c i a l . " Later that day, a f te r her surgery, Rebecca had an a l l e r g i c react ion to morphine. She became very s i c k . A f r i end t o l d Rebecca afterwards that despi te being s i c k and groggy Rebecca had asked her f r i end to exercise her l e f t arm, the s ide of her surgery. We laughed at that . Rebecca found that having f r iends v i s i t i n h o s p i t a l made her f e e l l i k e an enter ta iner , which she found was very t i r i n g . 102 Rebecca t o l d me that jus t before her surgery she and N e i l had bought a new house. So while she was in h o s p i t a l a f t e r her surgery N e i l was br ing ing documents for her to s i g n . "It was a lso sor t of symbolic of the new l i f e in a way. It was a d e c i s i o n , and I wasn't there to do any of the work." A f te r the surgery there was another wait ing per iod for the pathology report on the lymph nodes. "There 's a chunk of time from there to d iagnos is . F u l l d iagnosis was another week, and then I knew what was ahead of me in terms of fur ther treatment, and what that meant in terms of work, and what that meant in terms of hea l th , and those kinds of th ings . I had no idea what i t meant in terms of in terpersonal s t u f f , but that I learned along the way, meeting other people. . . So, I r e a l i z e d in ten days that I d id have spread to the lymph nodes and I had a type of cancer that wasn't a l l that common, umm, and presumably spread e a s i l y and so on. . . So I wasn't happy about that , but that was the way i t was so i t was then going to chemotherapy, and working out a l l the medical d e t a i l s in terms of my Parkinson's medicat ions, and a l l that kind of s t u f f . So I suppose t h a t ' s kinda of a f i r s t chapter of s o r t s . " 57 Rebecca had a segmental . About 2 0 lymph nodes were removed. She found the surgery very d i s a b l i n g . However her arm d id not s w e l l 5 8 . "But with my Park inson 's , again, i t ' s in te rac t ions a l l the t ime, because i t ' s mainly in my l e f t s i d e , although i t i s a lso my r i g h t , and so with that with that s t i f f n e s s i s a lso created more pa in , and more d i s a b i l i t y in terms of f l e x i b i l i t y of the arm and so on. . . I t ' s s t i l l very sore and t h a t ' s qui te a long time ago now, nine months or whatever. That 's a good po in t , I mean t h a t ' s sor t of l i k e the lowest l e v e l of experience, but none the l ess i t ' s a ser ious one 57 A segmental i s the removal of the lump and some surrounding t i s s u e , i t i s the same as a lumpectomy. The amount of breast t i s s u e removed i s up to the surgeon (Love 1990). 5 8 With the removal some of the lymph nodes from under the arm some women w i l l get lymphedema, where f l u i d c o l l e c t s in the so f t t i s s u e , causing swel l ing (Love 1990). There were a number of women who had ser ious problems with edema. 103 because i t a f f e c t s your day to day l i f e . You know you c a n ' t reach around and grab your seatbel t i n the car or whatever. There 's reminders a l l day long that I have a couple of i n c i s i o n s that make my body f e e l uncomfortable." With the r e s u l t s of a l l the t e s t s Rebecca and the surgeon decided she needed chemotherapy. So Rebecca was re fer red to the B r i t i s h Columbia Cancer Agency. " I t ' s absolute ly f asc ina t ing because a l l these things happened, with unknown p a r t i c i p a n t s . I mean I d i d n ' t know who I was being re fer red t o . I 'd never met the person in my l i f e . Of course I always knew I could dump them i f I d i d n ' t l i k e them, but i t was s t i l l kind of a plunge i n t o , in to that i n s t i t u t i o n that I 've always v i s i t e d people i n , but never been a part o f . And umm, a f r i end of mine had died a year before of the same th ing , wel l the same in the sense of being a type of breast cancer. My mother had died of cancer, and I 'd known a couple of other people along the way, but i t was now my tu rn . Which i s qui te d i f f e r e n t . " Rebecca descr ibed her f i r s t v i s i t to the B r i t i s h Columbia Cancer Agency. "To s i t i n a wait ing room with people who a l l had cancer, and nobody was speaking, was r e a l l y something. A l l those people s i t t i n g there , and maybe they a l l d i d n ' t have cancer but umm, most of them probably d i d . . . Thinking of what I know now, what I 've experienced now, and how I view that i n s t i t u t i o n versus then, I never f e l t l i k e a v i c t i m but I f e l t a neophyte, r e a l l y a neophyte. I d i d n ' t - I was jus t going into i t as an experience. On r e f l e c t i o n I guess I 've learned more." Rebecca s tar ted her chemotherapy a week l a t e r . "Which i s another realm as w e l l . . . The people i n the wait ing room there seemed, qu i te , I remember, sor t of a l e s s depressed f e e l i n g than, maybe i t was because they f e l t that there was something being done for them. Whereas, i n the c l i n i c a l wait ing room i t was kinda l i k e everyone looked l i k e a potato. Just s i t t i n g there . . . I r e a l l y d i d n ' t f e e l , I f e l t more anxiety a f te r the f i r s t one than I d id for the f i r s t one [treatment] as an unknown. I f e l t the most anxiety , the very most anxiety between my t h i r d and fourth treatments. And I don ' t know why, but I jus t d i d n ' t wanna go back." 104 Rebecca got s i c k with her chemotherapy, jus t l i k e other women she has ta lked t o . "I th ink my persona l i ty was d i r e c t i n g me to jus t get through i t . And not, jus t put experience as ide , and jus t get through i t . And the rad ia t ion would be easy in comparison to that . That was my a t t i t u d e . It r e a l l y was h o r r i b l e . " Before she s tar ted her chemotherapy Rebecca was given choice of having i t fo r e i ther four or nine months. In the case of the four month treatment the drugs would be much stronger dosages, and i t would e n t a i l l o s i n g her h a i r . "Of course I wanted the shorter one. . . I t ' s a very a l i e n a t i n g experience. I mean the best part of the experience, I found, was a c t u a l l y being there being administered the drugs. The most a l i e n a t i n g par t , I th ink , was a f te r jus t f e e l i n g c h r o n i c a l l y nauseated for four months. And umm, and having sk in break down and a l l those other things that happen. . . I jus t d i d n ' t f e e l that I was, I was a part of what normally goes on in day to day l i f e . But a l s o , I th ink , I f e l t that t h i s was the route that had to be taken. So you know, I take i t . Tha t 's the way i t i s . . . T o go through a l l t h i s , and not to be able to be t o l d you ' re in remission, or you don' t have i t , to not know, that i s r e a l l y asking a l o t of a person. But t h a t ' s a l l they have. So, so when i t was a l l over inc lud ing the rad ia t ion and people sa id 'Wel l are you in remission?' and you say ' W e l l , I don ' t know but I hope s o . ' I mean, i t ' s r e a l l y crude." Rebecca f e l t very for tunate . "I had people around who, enough people to understand that i t was an acute and unusual per iod in my l i f e . And the people who f e l t that they cou ldn ' t handle i t , j us t d i d n ' t p a r t i c i p a t e , and that was f i n e . I t a lso struck me, during that experience when I needed to t a l k to f r i e n d s , and so on, the d i f fe rences in response to i l l n e s s . And the sor t o f , the f a l s e reassurances that people f e e l that do such good. Oh, such as , 'Oh, y o u ' l l be jus t f i n e . ' . . . I t ' s jus t c l a s s i c pro tec t ion r e a l l y but ah, but my way of responding was usua l ly that , using the f a c t s , and ah, s t a t i s t i c s , and I'm a l i v e now and t h a t ' s a l l that matters, and so on. 105 But umm, I th ink s t o r i e s of , cancer s t o r i e s are a l l over the p lace . And i t ' s the good ones that usua l ly get ta lked about, as a s p i r i t l i f t e r , I suppose, a s p i r i t l i f t e r of those in the middle . . . I d i d n ' t have any patience with any of that s t u f f . Although now, I'm f ind ing I'm more t o l e r a n t . Because I know people are a f r a i d now, at that time I d i d n ' t have the empathy, I d i d n ' t have the energy." I asked Rebecca to t e l l me some of the " s p i r i t l i f t i n g " s t o r i e s she had heard. She explained the ones she heard were from ind iv idua ls rather than the media. "Oh, my mother l i v e d for ten years . And I would think to myself okay do I jus t l e t t h i s go, or do I deal with i t the way I r e a l l y f e e l . And i t would depend on the person. . . Sometimes I f e l t j us t downright annoyed, but then I got r i d of that , and I r e a l i z e d that we're a l l kind of s e l f p ro tec t ive in a way. " These s t o r i e s were a way for these people to protect themselves from the r e a l i t y that they might a lso get cancer. " I t ' s not acknowledging that cancer i s around us . And cancer has an image, has a face , and i t ' s not a good one. But that umm, but even though i t doesn' t have a good face they, you know, comments l i k e 'Oh, you ' re the strongest person I know' as i f that would help me get through, umm, the longest number of years I can drag out of t h i s th ing , or make me f e e l be t te r , or whatever. . . Then I r e a l i z e d pret ty qu ick ly that t h e r e ' s t h i s t r a i n of thought that a c t u a l l y one can take some r e s p o n s i b i l i t y for t h e i r i l l n e s s , which was even more b i za r re to me, and i t was jus t amazing." I asked Rebecca to t a l k more about t h i s idea of taking r e s p o n s i b i l i t y fo r your i l l n e s s . "I guess people wanted to say to me that I may not f e e l i n c o n t r o l , but r e a l l y I could be, and i f that were to happen l o g i c a l l y , umm, then I would f e e l be t te r . 'No, no t h a t ' s not r i g h t ' , that was my th ink ing , I was saying that , maybe that by taking r e s p o n s i b i l i t y , l i k e exerc is ing and doing a l l these l i f e s t y l e th ings , that jus t makes a person f e e l good. But the l i n k s that were being made that I thought were t o t a l l y i l l o g i c a l were things l i k e i f you meditate three times a day you can f igh t back the c e l l s , and t h e r e ' s evidence for t h i s , i f you j o i n a support group 106 you' re going to l i v e two years longer. I mean i t ' s jus t a l l these s t o r i e s . They abound, they absolute ly abound. I jus t found that i t ' s garbage, i t ' s jus t garbage, even i f there were evidence, i t i s s t i l l jus t evidence, i t ' s s t a t i s t i c a l . So okay, so here we are again, the same dynamic as people t r y i n g to he lp , and t r y i n g to fend o f f the fear that abounds about having a shortened l i f e . Whether from me or for them. But at times i t was pret ty bloody annoying I mean i t was wasted time to me." A f te r t a l k i n g some more about the p o s i t i v e cancer s t o r i e s , Rebecca continued to t a l k about her experience. "So there you are completely h a i r l e s s , and i t ' s time to go into rad ia t ion with, with male techn ic ians . And i t ' s by that time I th ink p h y s i c a l l y and emotionally some people f e e l l i k e they have something s t r ipped o f f them. And I c e r t a i n l y d id too. And that kinda in a way made i t eas ier to go through r a d i a t i o n , 'cause I f e l t so t o t a l l y unhuman by that t ime. I mean even though I th ink I struggled with i t , and so do others, I know that i t was jus t as wel l that you f e e l l i k e a piece of s h i t by the time you get to r a d i a t i o n . People who don' t go through chemo don' t have that b e n e f i t . 1 1 Rebecca found that rad ia t ion was manageable, but again having Parkinson's made treatment more complicated. "Because of my Parkinson's I cou ldn ' t get my arm in the proper place and so on. So there I was t r y i n g to educate people about what Parkinson's i s , and why I c a n ' t do c e r t a i n th ings , and so on, and so f o r t h . . . That 's a percept ion problem though. I t ' s a percept ion problem they knew the f a c t s , but they could not perceive me as having a movement d i s o r d e r . " I asked Rebecca i f she thought the percept ion problem was because she was young and young women are not usua l ly d i s a b l e d . She agreed, and f e l t that more help might be extended to an older woman because an older woman would be expected to have d i f f i c u l t y in moving her arm above her head or get t ing up on the s t re tcher without ass is tance . Rebecca had rad ia t ion therapy on 16 consecutive days. She 107 had a react ion to the r a d i a t i o n therapy. "They sa id that , that would s ta r t at three weeks a f te r going through the rad ia t ion therapy. And I must say that was the one th ing everybody was accurate on. That three weeks a f te r I got a l o t of fa t igue , and my sk in s tar ted to p e e l , and I f e l t qui te s i c k , and so on. And a f t e r , i t took about three months, and then things s e t t l e d down." Rebecca asked her oncologist for copies of her medical char t . The oncologist refused to give them to her , so she obtained copies d i r e c t l y from the Department of Health Records at the B r i t i s h Columbia Cancer Agency. She found the a t t i tude of the oncologis t "pa t ron iz ing" . "A hierarchy l i k e the Cancer Agency were, were t h e r e ' s the do-gooders and the people who are been done good t o . What aggravated me the most, what concerned me the most, was the i n a b i l i t y to see pat ients as peers. . . Yet we're the ones that keep them in t h e i r damn jobs , you know. And we're the ones that r e a l l y know what i t i s l i k e , and they ' re the ones who have the s c i e n t i f i c knowledge which we need so badly . And i t ' s a per fec t par tnership , i t ' s a per fec t par tnersh ip , but i t doesn' t take p lace . I t ' s astounding. . . Where on the other hand, you ' re t o l d t o , umm, to do a l l these other things l i k e l i f e s t y l e , and look a f te r y o u r s e l f , and whatever. And yet some women don ' t even know what type of breast cancer they have, they have no idea . They've never even seen the pathology repor t . . . That 's hard when t h e r e ' s low energy to f i g h t for your f i l e s , and that was me for the piece of paper, and I succeeded but i t took a l o t of energy. And I s t i l l don' t understand i t , I r e a l l y d o n ' t . Wel l , I understand to the extent that I th ink that cancer has made some progress in coming out of the c l o s e t , but , but not very much. And I th ink i t ' s a l l wrapped up in t h i s secrecy, and over -protect iveness of women." Rebecca ta lked about the idea of forming a partnership between the pat ient and the phys ic ian . "Although I th ink that the medical establishment i s s t i l l d ivorced from, I mean I don ' t th ink i t i s pushed as a value that helps with hea l ing . But i t ' s in the l i t e r a t u r e , but i t ' s not in day to day l i f e . . . I t shocks me because i t ' s a resource that , umm, medical people a ren ' t p ick ing up on. That t h e i r pat ients 108 ac tua l l y could o f f e r them some ins igh t into what they could suggest. . . I was the one who informed him that one of the drugs was contra indicated with Park inson 's , wel l he d i d n ' t know anything about Park inson 's , and so I gave him the name of the neurologist that he could phone and f i n d out, which he d i d n ' t do. And so , as a consequence, I suf fered with one of the drugs that I d i d n ' t need t o . But then i t comes back to do you wanna l i v e , or don' t you wanna l i v e , you know. And of course t h a t ' s number one, of course I want to l i v e . But I don ' t th ink i t ' s that s imple ." Rebecca went on to t a l k about the s ide e f fec ts of treatment. "Side e f f e c t s are not considered valuable r e a l l y , i t ' s more prognosis I th ink . That 's the o n c o l o g i s t s ' view t h a t ' s were they ' re a t . . . I jus t think t h e r e ' s not a value placed on knowing. 'So what, so you ' re t e l l i n g me that you threw up a l l day, w e l l , what d id you expect from the drug?' Or t h a t ' s what happens. And, t h i s i s what i s needed to go through in order to l i v e as long as you poss ib ly can. . . But from the p a t i e n t ' s point of view, not the doc to r ' s point of view, i t ' s a whole d i f f e r e n t story i s n ' t i t ? I t ' s the day to day ex is tence, and i t ' s very c r i t i c a l to happiness, and other th ings . That wasn't a new experience but ah, everybody many many people seem to f e e l that . And i t i s hard with an i l l n e s s that i s e i ther chronic or l i f e threatening. I t ' s harder because every moment does count. So fo r me I th ink in terms of i l l n e s s and having Parkinson's i t was, i t was kinda l i k e two things wi th in me sor t of warring with each other. And umm, and meeting other people who d i d n ' t have a second i l l n e s s and were s t i l l f ind ing i t d i f f i c u l t and that provided a good measure for me in terms on not expecting too much of myself . That 's at a very personal l e v e l . . . So i n terms of the cancer experience I th ink without c e r t a i n key things such as a sympathetic G.P. as your advocate, umm, a good l i v i n g s i t u a t i o n , not having ser ious money problems, umm, whatever i t happens to be to me sor t of comprises, wel l that i s the s u r v i v a l c i r c l e . These things for me were r e a l l y c r i t i c a l i n get t ing through." G.P. i s short fo r "general p r a c t i t i o n e r " or family doctor . 109 Since completing her r a d i a t i o n therapy Rebecca has not had any fur ther treatment. She i s taking tamoxifen. "And that i s a drug with l o t s of s ide e f f e c t s , of course, which i s not , i t ' s jus t considered part of the p i c t u r e . " Rebecca i s cur rent ly involved in two support groups for women who have had a diagnosis of breast cancer. One group meets once a month at the B r i t i s h Columbia Cancer Agency, the other meets once a month in one of the member's homes. "So t h a t ' s a cont inuat ion in a sense, but i t i s a cont inuat ion with the emphasis on l i f e rather than treatment. And where the re 's mutual respect of each other which i s often d i f f e r e n t than an i n s t i t u t i o n . So as far as cancer experience, i t w i l l go on, and on. I suspect i t w i l l go on, and on, and ce r ta in people w i l l come forward for a while and then t h e r e ' l l be a meeting of the minds, and then that w i l l recede and something e lse w i l l happen. You know I can see that kind of movement over the next whi le . And I th ink as I d istance myself from the c l i n i c a l experience I th ink there w i l l be more understanding on my part about what i t was a l l about. And what i t might be the next t ime. And what i t i s fo r people going through i t r i g h t now." I asked Rebecca when she s tar ted going to the support group. She r e p l i e d she went to a d rop- in group at the B r i t i s h Columbia Cancer Agency almost immediately a f te r s t a r t i n g her treatment. She asked i f they had a support group for partners of women with breast cancer, because N e i l was in terested in attending a support group. A group for partners was s ta r ted , and was very s u c c e s s f u l . Rebecca wanted to s t a r t going to the support groups ear ly in her treatment because she was concerned she might become too s i c k to attend l a t e r . Attending a support group f i t with her personal philosophy of the importance of grassroots organiz ing and learn ing from others . However, she commented that the notion of 110 an i l l n e s s br ing ing people together has i t s l i m i t s . From her experience with both Parkinson's and cancer she found there are c e r t a i n people she w i l l draw out of the support group. She w i l l l i n k up with someone who i s a "soul mate". I asked Rebecca how she got involved with the support group outside the B r i t i s h Columbia Cancer Agency. She explained she asked the s o c i a l worker who runs the Agency's support group i f she knew of any groups outside the Agency. The s o c i a l worker introduced her to the group she now p a r t i c i p a t e s i n . This group developed from a group of women who had been in treatment at about the same time. She described t h i s group as being "part s o c i a l time and part cancer t ime", whereas the support group at the B r i t i s h Columbia Cancer Agency i s more down to business. " I t ' s a weird kinda f e e l i n g in terms of t ime, because I know as time passes, and has happened a l ready, people do drop by the wayside. And t h a t ' s part of the r e a l i t y as w e l l . So, whereas wi th , say, a Parkinson's support group you know that you ' re going to t r y and help and be helped as time goes on, and things become increas ing ly d i f f i c u l t . This way i t ' s more l o s i n g , you w i l l be l o s i n g people along the way permanently, and so I view i t as a, we often t a l k about t h i s , we view i t as a present , but future experience at the same time. And to t ry and reassure ourselves that we know the medical f a c i l i t y i s not going to be by our s ide at our death bed, they w i l l not be there , they w i l l be out deal ing with new pa t i en ts . So by get t ing to know each other now that support can be r igh t at our f i n g e r t i p s . I tend to t a l k about i t a l i t t l e more than others . But I th ink i t ' s i m p l i c i t , I th ink i t ' s i m p l i c i t . Right now i s a good per iod of time because we are a l l kind of recent ly f i n i s h e d . And w e ' l l sor t of see what happens." I asked Rebecca i f women leave the support group as they get fur ther from the per iod of ac t ive treatment. "No, I would say qui te the opposi te , because I th ink now what has happened i s as we're moving away from the i n s t i t u t i o n from the symbol of i t , or whatever i t i s , umm, the r e a l i t y of l i v i n g with an i l l n e s s that I l l nobody can r e a l l y see. And umm, and that creates c e r t a i n changes with a person in a previous l i f e , a pre-cancer l i f e , that sor t of th ing . And what's of great concern to many women i s to sor t out who are we now, and what do we i d e n t i f y wi th, and how do others see us . And ah, because we've been through traumatic bod i ly changes that have been, that have hurt , and that are not going to be re t r ieved again. So t h a t ' s , t h a t ' s even more potent s t u f f than the treatment r e a l l y , because l i v i n g i s harder than dying. And t h a t ' s what we t a l k about a l o t . So, and t h e r e ' s never any easy answer to i t , i t ' s more jus t t r y i n g to get a grasp on what part of you have - what part of us have we dragged across the c o a l s , and what part of us have we l e f t behind, and i s there a corner t h a t ' s new, t h a t ' s completely new. And everybody has a d i f f e r e n t experience of that . I th ink the i l l n e s s i s s t i l l , i s very ever present , but not in an acute way, but as a chronic problem, s o c i a l problem." Rebecca described what happens in the support group. "I remember ear ly on the concerns were very much l inked to treatment, and 'what i s going to happen to me?' Very much so , and I was there as w e l l . And somebody e lse who had jus t been through that stage would lend ass is tance to that person. So i t was very much a kind of immediate management of something overtaking t h e i r l i v e s , our l i v e s . . . This seems to be a common theme ' I ' v e f i n i s h e d treatment now who am I? ' Immediately post-treatment 'I don' t have a rad ia t ion appointments to go t o , so what the h e l l am I gonna do?' or something l i k e that . And probably at that po in t , wel l t h a t ' s a rea l s t ruggle , t h a t ' s a rea l s t ruggle people as they are suddenly s t a r t i n g to s i t back and th ink about what has happened to them. I don ' t remember doing that a c t u a l l y myself , but I understand that t o t a l l y . And then i t s tar ted on t h i s support business. The support that was given to us when we were c r i t i c a l l y i l l , and throwing up, and l o s i n g our h a i r , and the support t h a t ' s given to us now. And some women have sa id that they f e e l that they are not ge t t ing any more support because they ' re f i n i s h e d , so percept ion goes. And yet t h i s i s the time when support i s most d i r e l y needed, I th ink . But the communication doesn' t al low for that , so women t a l k about f r i e n d s h i p s , or whoever you' re l i v i n g with umm, those kind of issues come to the fore because t h a t ' s when people they ' re f e e l i n g a rea l need for connecting to the rea l world, and i t ' s jus t at the time when people are s t a r t i n g to simply 112 withdraw. The non-s ick , the non-s ick are withdrawing from t h i s . " I questioned Rebecca about saying that she d id not f e e l t h i s post-treatment l e t down and quest ioning of h e r s e l f . "I r e c a l l th ink ing i t was nice not . . . going to the i n s t i t u t i o n for r a d i a t i o n . It was n ice not having to go. So I f e l t that sense of free choice that I could now do what I wanted to do, which i s to resurrect some of the things I wanted to do . . . I guess i t ' s because I thought that up ' t i l that point I th ink everything had blended one, into the next, in to the next, and now into the next, so i t wasn't kinda l i k e a block that I could draw l i k e a square and the end of rad ia t ion and now there 's THE FUTURE. It j us t d i d n ' t work l i k e that with me. . . I f e l t that i t went qui te smoothly, and I, of course, I r e a l l y d i d n ' t f e e l wel l u n t i l three months a f t e r rad ia t ion anyway. . . Cer ta in ly for me i n terms of ge t t ing on d i s a b i l i t y insurance and a l l tho