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Women's experiences of radical surgery for gynecological cancer : a feminist phenomenological study Janyce, Dayna Gayle 1989

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WOMEN'S E X P E R I E N C E S OF RADICAL SURGERY FOR GYNECOLOGICAL CANCER: A FEMIN IST PHENOMENOLOGICAL STUDY By DAYNA GAYLE JANYCE • N . , T h e U n i v e r s i t y o f B r i t i s h C o l u m b i a , 1 T H E S I S SUBMITTED IN P A R T I A L F U L F I L L M E N T OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF S C I E N C E IN NURSING i n THE FACULTY OF GRADUATE STUDIES S c h o o l o f N u r s i n g We a c c e p t t h i s t h e s i s a s c o n f o r m i n g t o t h e r e q u i r e d s t a n d a r d THE UNIVERSITY OF B R I T I S H COLUMBIA O c t o b e r , 1989 (c) D a y n a G a y l e J a n y c e , 1989 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. The University of British Columbia Vancouver, Canada DE-6 (2/88) i i ABSTRACT It i s recognized t h a t r a d i c a l surgery for g y n e c o l o g i c a l cancer causes s i g n i f i c a n t negative e f f e c t s on women's body image, s e x u a l i t y , and s e l f - e s t e e m . However, r e s e a r c h e r s are u n c e r t a i n why women experience f e e l i n g s of depression and n e g a t i v i t y towards body image even two years a f t e r removal of the uterus due to cancer. To gain an understanding of s p e c i f i c f a c t o r s which cause these prolonged negative f e e l i n g s , i n f o r m a t i o n was sought on the s u b j e c t i v e experiences o f women f o l l o w i n g t h i s r a d i c a l surgery. The study's f e m i n i s t t h e o r e t i c a l framework gave d i r e c t i o n to i n v e s t i g a t e women's s u b j e c t i v e experiences through language. The phenomenological r e s e a r c h method was chosen as i t allowed the d i s c o v e r y of women's s u b j e c t i v e experiences through a n a l y z i n g t h e i r v e rbal p e r c e p t i o n s . The women d e s c r i b e d t h e i r emotional and p h y s i c a l needs and experiences r e l a t e d t o t h i s surgery which i n c l u d e d f i n d i n g out about cancer, needing support from o t h e r s , understanding the surgery, p h y s i c a l r e covery, sexual needs, b e l i e f s and f e e l i n g s about cancer, and changes i n body s t r u c t u r e and f u n c t i o n . The study's f i n d i n g s show t h a t t h i s surgery was an em o t i o n a l l y and p h y s i c a l l y t r a u m a t i c experience. It was i i i concluded that these women did not receive adequate profess ional emotional support and information about the e f f e c t s of th is surgery. It was also concluded that , although the women's perception of se l f -worth was enhanced by surv iv ing t h i s surgery, t h i s perception was a lso s i g n i f i c a n t l y inh ib i ted by the gr iev ing process which i n t e n s i f i e d several months af ter surgery. The impl icat ions of the s tudy 's f indings for nursing p r a c t i c e , educat ion, and research were o u t l i n e d . TABLE OF CONTENTS Abstract L i s t of Figures Acknowledgements CHAPTER ONE. INTRODUCTION TO THE STUDY The Problem The Purpose The Theoret ica l Framework Research Questions The Study's S ign i f i cance Introduction To Methodology D e f i n i t i o n Of Terms Assumpt i ons L imi ta t ion Summary CHAPTER TWO. REVIEW OF LITERATURE Introduct ion Self-Image And Women's Needs Self -Esteem And Women's Needs Sexual i ty And Women's Needs Summary V CHAPTER THREE. METHODOLOGY 25 Phenomenological Research 25 Se lec t ing The Par t ic ipants 27 E th ica l Considerat ions 27 C o l l e c t i o n Of Data 28 Analysis Of Data 31 Summary 33 CHAPTER FOUR. WOMEN'S EXPERIENCES AND NEEDS 34 Introduction 34 The Par t ic ipants 35 I. Finding Out About Having Gynecological Cancer 37 1. Sensing That Something Was Wrong 37 2. Reacting To The Cancer Diagnosis 42 3. Needing Support From Others 57 4. Understanding The Surgery 69 Summary 85 II. Physical Recovery After Radical Surgery For Gynecological Cancer 88 1. Needing Time To Regain Strength 88 2. Bowel And Bladder Problems 93 3. Vaginal Healing And Reconstruction 100 Summary 123 V 1 III. Self- image After Radical Surgery For Gynecological Cancer 125 1. B e l i e f s And Feel ings About Cancer 125 2. Changes In Body Structure And Function 142 3. Perception Of Self-Worth 165 Summary 192 CHAPTER FIVE. SUMMARY, CONCLUSIONS, AND IMPLICATIONS 195 FOR NURSING Summary 195 Conclusions 197 Imp1i cat ions 200 Implications For Nursing Prac t ice 200 Implications For Nursing Education 203 Implications For Nursing Research 204 BIBLIOGRAPHY 206 APPENDIX A 213 v i i LIST OF FIGURES F i g u r e 1 . A diagram of the f e m i n i s t t h e o r e t i c a l framework 6 ACKNOWLEDGEMENTS I wish to acknowledge the fo l lowing ind iv idua ls for the i r guidance, support, pat ience, and humor: My thes is adv isors: Dr. Joan M. Anderson and Dr. Mari lyn D. Willman. My mother: Eve Steinhauer. My partner: Pat Egan. My family and f r i e n d s : Leah Tonsaker; Art Claxton; Lorna Tower; Corky Tower; Myri l Harth; Mary Dupuis; P a t r i c i a F i t z g e r a l d ; Katr in Akrami; and Redge Loewen. My the rap is t : F lo O l i v i e r . I s incere ly thank Mike Turko, M.D., for assistance in f ind ing the study 's p a r t i c i p a n t s , and Donelda E l l i s , M .S .N . , R .N . , for being external reader for t h i s t h e s i s . I a lso acknowledge and s incere ly thank the f i v e women who par t ic ipa ted in t h i s study. 1 CHAPTER ONE INTRODUCTION TO THE STUDY The Problem Of a l l female surgery, the removal of r e p r o d u c t i v e and sexual organs holds the most emotional s i g n i f i c a n c e f o r women (Keaveny, Hader, Massoni, and Wade, 1973; Kolb, 1977; Steptoe, H o r t i , and Stanton, 1986). It i s known t h a t r a d i c a l surgery f o r g y n e c o l o g i c a l cancer causes s i g n i f i c a n t negative e f f e c t s on women's body image, s e x u a l i t y , and s e l f - e s t e e m (Anderson and Hacker, 1983; F i s h e r , 1979; Lamont and D e P e t r i l l o , 1980; Sewell and Edwards, 1980). However, i t i s u n c e r t a i n why women experience f e e l i n g s of depression and n e g a t i v i t y towards body image even two years a f t e r removal of the uterus due to cancer (Krouse and Krouse, 1981). Researchers have suggested t h a t these prolonged negative f e e l i n g s may be caused by p e r s i s t e n t p h y s i c a l symptoms and unresolved bereavement f o r the f u n c t i o n a l and symbolic meaning of the uterus (Krouse and Krouse, 1981; Sloan, 1978). In order t o gain an understanding of s p e c i f i c f a c t o r s which cause these prolonged negative f e e l i n g s , r e s e a r c h on the s u b j e c t i v e experiences of women f o l l o w i n g r a d i c a l surgery f o r p e l v i c surgery i s necessary. 2 The Purpose The purpose of t h i s study is to develop a d e s c r i p t i v e , q u a l i t a t i v e analys is of women's subject ive experiences and needs fo l lowing rad ica l surgery for gynecological cancer. The Theoret ica l Framework The theore t ica l framework for t h i s study cons is ts of f i v e p r i n c i p l e s which were developed from Weedon's (1987) text on feminist p rac t ice and p o s t s t r u c t u r a l i s t developments in theor ies of language, s u b j e c t i v i t y , d iscourse , and power. In b r i e f , pos ts t ruc tura1 is t theory maintains that the mechanisms of power in society develop through language which a lso creates an i n d i v i d u a l ' s subject ive experience (Weedon, 1987). Before presenting the f i v e p r i n c i p l e s of the s tudy 's theore t ica l framework, the ra t iona le for se lec t ing a feminist approach in research w i l l be d iscussed. The overa l l purpose of feminist philosophy is to understand and improve the s i t u a t i o n of women ( E i c h l e r , 1985). A major goal in feminist research, there fore , is to achieve soc ia l j u s t i c e for women's r ights and a c t i v i t i e s which means changing s o c i e t y ' s power 3 r e l a t i o n s : Feminism i s a p o l i t i c s d i r e c t e d at changing e x i s t i n g power r e l a t i o n s in s o c i e t y . These power r e l a t i o n s s t r u c t u r e a l l areas of l i f e , the f a m i l y , education and w e l f a r e , the worlds of work and p o l i t i c s , c u l t u r e and l e i s u r e . These power r e l a t i o n s determine who does what and f o r whom, what we are and what we might become (Weedon, 1987, p. 1). Another major goal i n f e m i n i s t r e s e a r c h i s t o i n v e s t i g a t e women's s u b j e c t i v e experiences and e l i m i n a t e s o c i a l i z e d b e l i e f s which harm women's h e a l t h : The emphasis on s u b j e c t i v e experience i s e s s e n t i a l t o a res e a r c h e n t e r p r i s e committed t o e x p l o r i n g the way in which women make sense of a world l a r g e l y designed by and f o r men ( P i r i e , 1988, p. 631). P i r i e (1988) a l s o s t a t e s t h a t a l l f e m i n i s t r e s e a r c h should take i n t o account these two goals of a c h i e v i n g s o c i a l j u s t i c e f o r women and i n v e s t i g a t i n g women's s u b j e c t i v e experiences. T h e r e f o r e , these two goals are in c o r p o r a t e d w i t h i n the t h e o r e t i c a l framework developed f o r t h i s study. As mentioned p r e v i o u s l y , t h i s framework c o n s i s t s of f i v e p r i n c i p l e s adapted from Weedon's (1987) t e x t on f e m i n i s t p r a c t i c e and p o s t s t r u c t u r a l i s t theory. T h i s t e x t focuses on a c h i e v i n g s o c i a l j u s t i c e f o r women by s t u d y i n g language through the i n d i v i d u a l ' s s u b j e c t i v e experiences. The Framework's F i v e P r i n c i p l e s (1) S u b j e c t i v e experiences, t h a t i s , the way a woman makes sense of l i f e , have no inherent meaning but are given meaning by 1anguage. (2) Language i s learned from others and c o n s t r u c t s a women's s u b j e c t i v e experiences in ways which are s o c i a l l y s p e c i f i c . ( 3 ) D iscourse (formal speech or w r i t i n g ) r e p r e s e n t s s o c i a l , economic, and p o l i t i c a l i n t e r e s t s which are c o n s t a n t l y vying f o r s t a t u s and power and, t h e r e f o r e , o f t e n g i v e a woman c o n t r a d i c t o r y and c o n f l i c t i n g v e r s i o n s of s u b j e c t i v e experiences. (4) Language i s s o c i a l l y and h i s t o r i c a l l y l o c a t e d i n d i s c o u r s e . Language i s the common f a c t o r and s t a r t i n g p o i n t in the a n a l y s i s of s o c i a l meaning, s p e c i f i c a l l y , how power r e l a t i o n s s t r u c t u r e s o c i e t y . It i s a l s o the common f a c t o r i n the a n a l y s i s of women's s u b j e c t i v e exper T ences. (5) A woman's s u b j e c t i v e experiences, which are given meaning by language, are, t h e r e f o r e , n e i t h e r u n i f i e d nor f i x e d but a s i t e of d i s u n i t y and c o n f l i c t ; a s i t e of s t r u g g l e over meaning which i s c e n t r a l t o the process of p o l i t i c a l change and to p r e s e r v i n g the s t a t u s quo. (Adapted from Weedon, 1987). These f i v e p r i n c i p l e s , which comprise the study's t h e o r e t i c a l framework, g i v e d i r e c t i o n to analyze women's s u b j e c t i v e experiences and, a l s o , to view these experiences as the s t a r t i n g p o i n t f o r understanding how power r e l a t i o n s s t r u c t u r e s o c i e t y . A conceptual diagram f o r the framework prov i d e s a v i s u a l understanding of the r e l a t i o n s h i p between a woman's s u b j e c t i v e experience, language, and power ( F i g u r e 1). Th i s framework supports developing knowledge on how p a t r i a r c h a l a t t i t u d e s i n re s e a r c h causes negative e f f e c t s on women's se l f - i m a g e . These a t t i t u d e s have caused the l a b e l i n g and deva l u i n g of c e r t a i n c h a r a c t e r i s t i c s 7 a s being abnormal, u n d e s i r a b l e and, somehow, p e c u l i a r t o females, f o r example, 6 Figure 1. A diagram of the feminist theore t ica l framework (adapted from Weedon, 1987). A WOMAN'S SUBJECTIVE EXPERIENCES are "making sense of l i f e " through LANGUAGE which is the " s i t e of struggle & c o n f l i c t " due to " s o c i a l , economic. & p o l i t i c a l discourses  vying for power" 7 expres s i o n s of v u l n e r a b i l i t y , weakness, and h e l p l e s s n e s s ( C h e s l e r , 1972; E i s e n s t e i n , 1983; Goub, 1985; L y t l e , 1977; Webb, 1985). Such l a b e l l i n g has negative e f f e c t s on women's se l f - i m a g e . It i s a l s o d e t r i m e n t a l to both sexes s i n c e e x p r e s s i n g emotional v u l n e r a b i l i t y and ve n t i n g f e e l i n g s reduces s t r e s s and i s an important p a r t of healthy coping behavior d u r i n g l o s s and normal growth and development ( M i l l e r , 1984; P e a r s a l l , 1987). In t h i s study's framework, however, th e r e i s d i r e c t i o n to analyze the s u b j e c t i v e experience, which i n c l u d e s emotions. T h e r e f o r e , t h i s r e s e a r c h supports and r e s p e c t s the ex p r e s s i o n and a n a l y s i s of emotions. In a d d i t i o n , the framework's p r i n c i p l e t h a t language gi v e s meaning to the s u b j e c t i v e experience d i r e c t s f e m i n i s t r e s e a r c h e r s t o avoid using male terms, thought processes, and mental images which exclude and devalue the female viewpoint and i d e n t i t y (Smith, 1979; V i c k e r s , 1984). An example i s the word, " p e n e t r a t i o n . " T h i s term i s commonly used t o d e s c r i b e g e n i t a l i n t e r c o u r s e , yet only d e s c r i b e s the male a c t i o n . Since the female a c t i o n during i n t e r c o u r s e i s the "e n c l o s u r e " of the pe n i s , t h i s term could be used to i n c l u d e the 8 female act ion during intercourse (Spender, 1980). In summary, the s tudy 's feminist theore t ica l framework gives d i r e c t i o n to invest igate women's subject ive experiences. Research Questions This study focuses on explor ing the subject ive experiences of women fol lowing rad ica l surgery for gynecological cancer. The author s p e c i f i c a l l y wished to discover how women experience sexual i ty and sel f -esteem af ter t h i s surgery, as these concepts were common themes in the l i t e r a t u r e on surgery for gynecological cancer (Anderson & Hacker, 1983; Budd, 1977; F inck , 1979; Johnson, 1987). The research questions were: (1) What are women's perceptions of the i r experiences and needs af ter rad ica l surgery for gynecological cancer? (2) How do these women experience sel f -esteem and sexual i ty af ter th is surgery? The Study's S ign i f i cance One of nurs ing 's goals is to support ind iv idua ls when loss in ter feres with the s a t i s f a c t i o n of basic needs. Therefore, women who experience the loss of reproductive and sexual organs due to cancer should 9 r e c e i v e nursing support which p r o t e c t s and maintains the s a t i s f a c t i o n of b a s i c needs n e g a t i v e l y a f f e c t e d by t h i s l o s s . The f i n d i n g s of t h i s study are s i g n i f i c a n t i n tha t they w i l l enhance the q u a l i t y of nur s i n g support f o r women who experience r a d i c a l surgery f o r g y n e c o l o g i c a l cancer. In a d d i t i o n , the study's f e m i n i s t p e r s p e c t i v e has s i g n i f i c a n c e f o r a l l women i n t h a t i t p a r t i c u l a r l y aims to i n c r e a s e women's r i g h t s and a c t i v i t i e s i n h e a l t h care. A f e m i n i s t p e r s p e c t i v e in re s e a r c h i s s i g n i f i c a n t as t h e o r i e s and conceptual frameworks which grew out of p a t r i a r c h a l t h i n k i n g have damaged women's h e a l t h , t h e i r s e l f - i m a g e , and t h e i r sense of w e l l - b e i n g (Ashley, 1978). I n t r o d u c t i o n t o Methodology T h i s study's f e m i n i s t t h e o r e t i c a l framework and rese a r c h questions support the ch o i c e of the phenomenological r e s e a r c h method: Fem i n i s t r e s e a r c h has i n c r e a s i n g l y embraced what are o f t e n c a l l e d the " s o f t paradigms"; models of resear c h which emphasize the s u b j e c t i v e experience, c o g n i t i v e s t r u c t u r e s , i n t u i t i o n , personal b i o g r a p h i e s , f e e l i n g s , and the a b i l i t y of both r e s e a r c h e r and s u b j e c t to r e a c t spontaneously and i n s t i n c t i v e l y to the t o p i c when i n t e r a c t i n g with each other ( P i r i e , 1988, p. 629). Phenomeno1ogists attempt to study the s u b j e c t i v e experience without preconceived e x p e c t a t i o n s . The aim of phenomenological r e s e a r c h i s to make human behavior v i s i b l e and understood, not by examining hypotheses, but by a n a l y z i n g i n d i v i d u a l s ' s p e c i f i c , v e rbal p e r c e p t i o n s of t h e i r experiences (Benner, 1985). The phenomenological r e s e a r c h method, t h e r e f o r e , allows the d i s c o v e r y of women's s u b j e c t i v e experiences through a n a l y z i n g verbal p e r c e p t i o n s . T h i s method enabled the author t o gather and analyze l a r g e amounts of s u b j e c t i v e data p u r e l y as the women v e r b a l l y d e s c r i b e d them (Ornery, 1983). T h i s study's methodology i s d i s c u s s e d f u r t h e r i n Chapter Three. D e f i n i t i o n of Terms  Radi c a l Surgery f o r G y n e c o l o g i c a l Cancer For t h i s study, r a d i c a l surgery f o r g y n e c o l o g i c a l cancer i s d e f i n e d as the removal of the uterus and some, or a l l , of the vagina. Some women have a v a g i n a l r e c o n s t r u c t i o n at the same time as the r a d i c a l surgery. Depending on the type, extent, and l o c a t i o n of the cancer, t h i s r a d i c a l surgery may a l s o mean the removal of lymph nodes, o v a r i e s , bladder, and lower bowel ( F a l k , 11 1985; Jakowatz, 1985; Lindsey, 1985; T a l l e d o , 1985; Vera, 1981). Radi c a l surgery f o r g y n e c o l o g i c a l cancer was s e l e c t e d f o r t h i s study so th a t the experience of l o s i n g the vagina as well as the uterus and o v a r i e s c o u l d be explored. The s u r g i c a l procedure of va g i n a l r e c o n s t r u c t i o n i s a l s o used f o r women who are born without a vagina. A f t e r v a g i n a l r e c o n s t r u c t i v e surgery, the women must keep a s i l i c o n e or styrofoam mold i n the vagina f o r thre e months. The mold i s removed b r i e f l y each day f o r douching. The l i n i n g of the new vagina, or neovagina, i s most s u c c e s s f u l when i t i s taken from a t r i p l e -t h i c k n e s s s k i n g r a f t or muscle donated from the t h i g h . Less f r e q u e n t l y , the amniotic sac from a p l a c e n t a i s used u n t i l the woman grows her own l i n i n g , which u s u a l l y takes two weeks. Regardless of the procedure which i s used, the new vagina s h r i n k s during the f i r s t s i x months to a year a f t e r surgery, and frequent i n t e r c o u r s e or d i l a t i o n i s necessary to reduce scar t i s s u e and c o n d i t i o n the new l i n i n g . Women who lose t h e i r bladder, lower bowel, or both w i l l have urostomy and colostomy stomas which empty u r i n e or s t o o l . The stomas are openings on the abdomen which are f i t t e d with p l a s t i c appliances to c o l l e c t excre t ions . A urostomy is made from a piece of bowel to which the ureters are attached. A colostomy is the end of the bowel which is brought up through the abdomen af ter the rectum has been removed. Self-Image Self- image is defined as an i n d i v i d u a l ' s unique b e l i e f s and images about the s e l f . These inc lude, for example, one's body appearance and func t ion , soc ie ta l r o l e , e f fec t on others , and state of c o n t r o l . These b e l i e f s and images about the s e l f change during the l i fespan due to growth and development and s i g n i f i c a n t events. They are s i g n i f i c a n t l y inf luenced by in teract ions with others and language. (Adapted from Sanford and Donovan, 1985). Se1 f -Esteem Self -esteem is defined as the perception of se l f -worth which comes from experiencing approval of one's sel f - image from s e l f and others. The perception of se l f -worth provides fuel for se l f -determinat ion and psychological growth. The perception of se l f -worth changes due to in teract ions with others and mental, p h y s i c a l , and emotional funct ion ing . (Adapted from Sanford and Donovan, 1985). Sexua1i ty S e x u a l i t y i s d e f i n e d as an i n d i v i d u a l ' s innate d e s i r e f o r sexual b o d i l y p l e a s u r e . S e x u a l i t y i s most u s e f u l l y d e s c r i b e d as a u t o - e r o t i c and p l u r a l , as the whole body can be the s i t e of sexual a r o u s a l . (Adapted from I r i g a r a y , 1985). Assumpt ions It i s assumed t h a t s o c i e t a l r o l e e x p e c t a t i o n s i n h i b i t women's a b i l i t i e s to develop and maintain p e r c e p t i o n s of s e l f - w o r t h . It i s a l s o assumed t h a t negative e f f e c t s on self - i m a g e and s e x u a l i t y , due to r a d i c a l surgery f o r g y n e c o l o g i c a l cancer, w i l l i n h i b i t women's development and maintenance of s e l f - w o r t h . L imi t a t i on Geography and time c o n s t r a i n t s impose a l i m i t a t i o n on the number of women inc l u d e d i n t h i s study. Summary In Chapter One, the s t u d y ' s problem was p resen ted and the s e l e c t i o n of a f e m i n i s t t h e o r e t i c a l framework d i s c u s s e d . P r i n c i p l e s of the f e m i n i s t framework and a c o r r e s p o n d i n g f i g u r e were p r o v i d e d . The s t u d y ' s s i g n i f i c a n c e f o r n u r s i n g and f e m i n i s t p r a c t i c e was d e s c r i b e d , and the methodology , r e s e a r c h q u e s t i o n s , and assumpt ions and l i m i t a t i o n s were p r e s e n t e d . The t e r m s , r a d i c a l su rgery f o r g y n e c o l o g i c a l c a n c e r , s e l f - i m a g e , s e l f - e s t e e m , and s e x u a l i t y , were d e f i n e d as they were used in t h i s s t u d y . Chapter Two i s a rev iew of r e l a t e d l i t e r a t u r e on r a d i c a l s u r g e r y f o r g y n e c o l o g i c a l c a n c e r . CHAPTER TWO REVIEW OF LITERATURE In t r o d u c t i o n T h i s review of l i t e r a t u r e i s organized under women's needs and se l f - i m a g e , s e l f - e s t e e m , and s e x u a l i t y . The m a j o r i t y of these p u b l i c a t i o n s a l s o c o n t a i n the common theme t h a t women who experience r a d i c a l surgery f o r g y n e c o l o g i c a l cancer need p r o f e s s i o n a l emotional support to s u c c e s s f u l l y a d j u s t to t h i s 1 i f e c r i s i s . Self-image And Women's Needs Several medical s p e c i a l i s t s have s t a t e d t h a t , although r a d i c a l surgery f o r g y n e c o l o g i c a l cancer prevents death, the q u a l i t y of l i f e a f t e r t h i s surgery depends on each woman's adjustment to a s i g n i f i c a n t change i n her se l f - i m a g e (Lindsey, 1985; T a l l e d o , 1985; Vera, 1981). As more women experience t h i s surgery, p h y s i c i a n s have r e a l i z e d t h a t the acceptance of change in s e l f - i m a g e r e q u i r e s emotional support t h a t i s o f t e n u n a v a i l a b l e : Faced with the a l t e r n a t i v e of death most p a t i e n t s are l i k e l y to accept t h i s r a d i c a l surgery. Many times only the p h y s i c a l needs of the p a t i e n t are s a t i s f i e d and she r e t u r n s home without emotional support (Ta l ledo, 1985, P. 181). Nurses have a lso discussed the importance of emotional support a f ter t h i s rad ica l surgery (F isher , 1979; Hamilton, 1973; Hampton, 1986; Wiley, 1979). Yet , planning nursing intervent ions to provide th is support is hampered since the s p e c i f i c needs of these women are unknown. There is speculat ion that the reason these women show no improvement in leve ls of depression and body image af ter twenty months is due to p e r s i s t i n g physical funct ional impairment and unresolved bereavement (Krouse and Krouse, 1982). Nurses who write on these women's psychological needs do not have s p e c i f i c information and have general ized these women's experiences: A woman who returns for fol low-up v i s i t s dressed a t t r a c t i v e l y and without urine and stool odors is probably an indiv idual who is assuming the r e s p o n s i b i l i t i e s of s e l f - c a r e and is attempting to return to her previous a c t i v i t i e s (Hampton, 1986, p. 285). Such general assumptions about women's needs fo l lowing rad ica l surgery for gynecological cancer reveal the lack of s p e c i f i c information. In f a c t , no nursing research on t h i s top ic is a v a i l a b l e . There are a few p s y c h o l o g i c a l s t u d i e s a v a i l a b l e f o r r e f e r e n c e , but these, too, provide only general i n f o r m a t i o n about these women's needs: A f t e r r a d i c a l surgery f o r p e l v i c cancer women w i l l renew s o c i a l c o n t a c t s , r e g a i n a sense of w e l l -being, and recover previous l e v e l s of se l f - e s t e e m . However, they w i l l a l s o d e t e r i o r a t e i n t h e i r p o s i t i v e body image, i n t e r p e r s o n a l r e l a t i o n s h i p s , and s e x u a l i t y (Sewell and Edwards, 1980, p. 37). These general statements are c o n t r a d i c t o r y as i t i s u n l i k e l y t h a t a woman would recover previous l e v e l s of se l f - e s t e e m at the same time she experiences d e t e r i o r a t i o n in her body image, i n t e r p e r s o n a l r e l a t i o n s h i p s , and s e x u a l i t y . Self-Esteem And Women's Needs The need f o r women to p r o t e c t s e l f - e s t e e m , or the pe r c e p t i o n of s e l f - w o r t h , a f t e r t h i s r a d i c a l surgery i s a major concern s i n c e a woman with an i n s u f f i c i e n t amount of s e l f - e s t e e m w i l l not be able to act in her best i n t e r e s t s , and a woman who has no s e l f - e s t e e m at a l l w i l l become overwhelmed and e v e n t u a l l y g i v e up (Sanford and Donovan, 1985). T h i s surgery i s considered to have c o n s i d e r a b l e n e g a t i v e e f f e c t s on the p e r c e p t i o n of s e l f - w o r t h because i t causes s i g n i f i c a n t changes in body structure and funct ion: Radical surgery for p e l v i c cancer is devastat ing. A woman w i l l f ind i t d i f f i c u l t to bel ieve that l i f e can continue with so many anatomic parts removed and w i l l be repulsed by the thought of using appliances to c o l l e c t body wastes (Hampton, 1986, p. 282). Furthermore, the loss of reproductive organs is known to have a ser ious e f fec t on a woman's perception of se l f -wor th : At 44 I suffered another shock to my system when my gynecologist ins is ted on removing my uterus. I experienced t h i s physical and symbolic invasion of my inner being, my sexual s e l f , as a loss of youth, of femin in i ty , of my place and funct ion in the world. These fee l ings were deeply rooted and transmitted through my female ancestors , generations of Eastern European Jewish mothers, for whom the act of g iv ing b i r th gave the only acceptable meaning to the i r l i v e s , const i tu t ing the i r personal contr ibut ion to the surv iva l of a severely oppressed and persecuted people (S iega l , 1985, p. 95). T h e r e f o r e , the loss of r e p r o d u c t i v e and sexual organs p a r t i c u l a r l y i n h i b i t s the p e r c e p t i o n of s e l f - w o r t h f o r women who b e l i e v e t h a t a s i g n i f i c a n t part of the female self - i m a g e i s being a mother and being s e x u a l l y d e s i r a b l e to a male partner (Budd, 1977; Finck, 1979; Johnson, 1987; Keaveny et a l , 1973; Lamont & D e P e t r i l l o 1980). Furthermore, there i s a l s o the common s o c i e t a l b e l i e f t h a t female enjoyment of s e x u a l i t y i s shameful (Lasky, 1982; Sanford and Donovan, 1986). Radical surgery f o r g y n e c o l o g i c a l cancer a l s o has the p o t e n t i a l t h e r e f o r e , to i n h i b i t the p e r c e p t i o n of s e l f - w o r t h when women b e l i e v e that cancer in the g e n i t a l area i s a punishment f o r sexual a c t i v i t y . S e x u a l i t y And Women's Needs Most women appear to experience d e t e r i o r a t i o n in body image and s e x u a l i t y a f t e r t h i s r a d i c a l surgery (Anderson and Hacker, 1983; F i s h e r , 1979; Vera, 1981). Sexual d i s s a t i s f a c t i o n i s repor t e d t o be caused by reduced g e n i t a l s e n s a t i o n s , p a i n f u l i n t e r c o u r s e , unacceptable body changes, and anxiety or shame about cancer (Lamont and D e P e t r i l l o , 1980). The t h r e a t of having cancer i s a l s o b e l i e v e d to i n c r e a s e emotional r e a c t i o n s to the los s of r e p r o d u c t i v e and sexual organs (Labrum, 1976; Sloan, 1978). 20 However, i t i s a l s o suggested t h a t g r e a t e r intimacy and i n c r e a s e d sexual s a t i s f a c t i o n o f t e n occur due to the l i f e - c h a n g i n g event of having cancer (Stevenson, 1986). Furth e r s u b j e c t i v e e x p l o r a t i o n s of women's s p e c i f i c sexual needs a f t e r t h i s surgery are r e q u i r e d . An example of a s u b j e c t i v e d e s c r i p t i o n i s the f o l l o w i n g quote from a woman one year a f t e r her v a g i n a l r e c o n s t r u c t i o n and e i g h t years a f t e r the removal of her uterus, vagina, and lower bowel due to va g i n a l cancer: I can f e e l s e x u a l l y arousing s e n s a t i o n s i n my new vagina and have an orgasm by rubbing my c l i t o r i s l i k e before my surgery, but I s t i l l wonder i f a man w i l l accept me as a whole, sexual woman (Stevenson, 1986, p. 1845). Feminist r e s e a r c h e r s b e l i e v e t h a t womens' sexual needs a f t e r t h i s surgery are not understood by most h e a l t h p r o f e s s i o n a l s ( C a i r n s and V a l e n t i c h , 1986). These r e s e a r c h e r s q u e s t i o n the e f f e c t s of r o u t i n e v a g i n a l r e c o n s t r u c t i o n , f o r example, which i s encouraged by surgeons who b e l i e v e t h a t "normal sexual f u n c t i o n i n g " enhances the success r a t e of t h i s r a d i c a l surgery ( T a l l e d o , 1985). C a i r n s and V a l e n t i c h (1986) maintain t h a t the r e c o n s t r u c t e d vagina o f t e n causes severe pain and c h r o n i c d i s c h a r g e which hinders recovery. They c r i t i c i z e those h e a l t h p r o f e s s i o n a l s who n e g l e c t to inform women about the s e r i o u s c o m p l i c a t i o n s of v a g i n a l r e c o n s t r u c t ion. These f e m i n i s t r e s e a r c h e r s a l s o c r i t i c i z e the medical p r o f e s s i o n ' s p a t r i a r c h a l b e l i e f s about women's s e x u a l i t y . C a i r n s and V a l e n t i c h (1986) b e l i e v e , f o r example, t h a t the medical p r o f e s s i o n ' s use of s i m p l i s t i c phrases to evaluate the success of v a g i n a l r e c o n s t r u c t i v e surgery devalues these women's sexual needs. That i s , some surgeons l a b e l the v a g i n a l r e c o n s t r u c t i v e surgery a success because the woman has a " f u n c t i o n a l vagina, adequate p e n e t r a t i o n without p a i n , or i n t e r c o u r s e with orgasm." These s i m p l i s t i c phrases, however, provide only a male viewpoint on female sexual s a t i s f a c t i o n which narrowly d e f i n e s and devalues these women's sexual needs. Feminist r e s e a r c h e r s ask f o r q u a l i t a t i v e s t u d i e s with a f e m i n i s t p e r s p e c t i v e , t h e r e f o r e , i n order to develop a female d e s c r i p t i o n of women's sexual needs a f t e r t h i s r a d i c a l surgery ( C a i r n s and V a l e n t i c h , 1986; Bernhard, 1986). Two p u b l i c a t i o n s provide a few s u b j e c t i v e d e s c r i p t i o n s of these women's needs. One i s a candid a u t o b i o g r a p h i c a l essay by a student nurse a f t e r surgery f o r v a g i n a l cancer ( B u r g e r , 1981). The o ther i s a c o l l e c t i o n of w r i t t e n answers to a q u e s t i o n n a i r e about female in t imacy a f t e r many types of c a n c e r . In t h i s second p u b l i c a t i o n , the women who had e x p e r i e n c e d surgery f o r g e n i t a l cancer d e s c r i b e d "a f e e l i n g of be ing h o l l o w ; as i f the c o r e of t h e i r i d e n t i t i e s as women and as peop le was l o s t " ( J o h n s o n , 1987). T h i s author c o n c l u d e d t h a t t h e r e i s a need f o r q u a l i t a t i v e r e s e a r c h on women who e x p e r i e n c e surgery f o r g y n e c o l o g i c a l c a n c e r . Summary T h i s l i t e r a t u r e rev iew shows t h a t women e x p e r i e n c e s i g n i f i c a n t p s y c h o l o g i c a l and p h y s i c a l problems f o l l o w i n g r a d i c a l su rgery f o r g y n e c o l o g i c a l c a n c e r . It i s a l s o e v i d e n t t h a t t h e s e women's e x p e r i e n c e s and needs are c o m p l i c a t e d by s o c i e t y ' s b e l i e f s and images about the female r o l e and the l o s s of r e p r o d u c t i v e and sexua l o r g a n s . However, s p e c i f i c g u i d e l i n e s f o r p r o f e s s i o n a l emot ional suppor t f o r these women are u n a v a i l a b l e . P r e s e n t r e s e a r c h on t h i s s u b j e c t p r o v i d e s on ly genera l i n f o r m a t i o n and i n c o r r e c t assumpt ions about t h e i r e x p e r i e n c e s and needs . T h e r e f o r e , a l though t h i s r a d i c a l s u r g e r y causes s i g n i f i c a n t n e g a t i v e e f f e c t s on p h y s i c a l f u n c t i o n i n g ; p e r c e p t i o n s of s e l f - i m a g e , s e l f - e s t e e m , and s e x u a l i t y , these women r e c e i v e inadequate p r o f e s s i o n a l emot ional s u p p o r t . In c o n c l u s i o n , i t i s c l e a r , based on the s p e c u l a t i o n s and assumpt ions found in the l i t e r a t u r e r e v i e w , t h a t a q u a l i t a t i v e a n a l y s i s of women's e x p e r i e n c e s and needs i s r e q u i r e d to p r o v i d e s p e c i f i c , s u b j e c t i v e i n f o r m a t i o n f o r p r o f e s s i o n a l u s e . Chapter Three d e s c r i b e s the phenomenologica l r e s e a r c h method used in t h i s study to gather and analyze women's s u b j e c t i v e d e s c r i p t i o n s of t h e i r experiences and needs f o l l o w i n g r a d i c a l surgery f o r g y n e c o l o g i c a l cancer. CHAPTER THREE METHODOLOGY Phenomenological Research Phenomenological research methodology is used to study the human experience. This methodology developed from a phi losophica l movement which opposed the prac t ice of studying humans with the same research methods used for studying ob jects : S c i e n t i f i c research methods had been developed to explain object phenomena; not the subject ive human experience. Many researchers searching for a l ternate methods, e s p e c i a l l y in psychology, r e a l i z e d that the phenomenological method had value for understanding and explaining the human experience. The goal of th is method, there fore , is to provide an accurate descr ip t ion of the subject ive human experience (Ornery, 1983, p. 51). Jn her a r t i c l e , "Phenomenology: A method for nursing research" , Ornery (1983) defined the p r i n c i p l e s of phenomenological methodology. In t h i s method the researcher not only uses data which she can see, hear, sme l l , and touch; she a lso uses subject ive descr ip t ions of meanings and fee l ings that the experience has for both herse l f and the indiv idual being studied (Ornery, 1983). She accepts a l l data as they are r e c e i v e d and attempts to c l e a r her mind of a l l preconceived ideas of the experience. The phenomenological r e s e a r c h e r does not expect d u p l i c a t i o n from other s t u d i e s but d e s c r i b e s themes w i t h i n data which can be compared with f u r t h e r s t u d i e s . She a l s o does not c r e a t e an o v e r l y i n g framework to pr e - o r g a n i z e data, but analyzes and o r g a n i z e s data as they are r e c e i v e d ; p r e f e r a b l y in the p a r t i c i p a n t s ' n a t u r a l language (Ornery, 1983). P a r t i c i p a n t s of the study should meet g u i d e l i n e s f o r phenomenological r e s e a r c h sampling: The p o p u l a t i o n from which the sample of s u b j e c t s i s drawn must have the a b i l i t y to speak with ease i n the r e s e a r c h e r ' s language, must understand and express inner f e e l i n g s without g u i l t or i n h i b i t i o n s , and must understand and express the p h y s i o l o g i c a l experiences t h a t accompany these f e e l i n g s . They must have had the experience being s t u d i e d , p r e f e r a b l y at a recent date, and be i n t e r e s t e d in the experience or f e e l i n g (Ornery, 1983, p. 60). F i v e women who met these c r i t e r i a agreed to take p a r t in t h i s phenomenological study on s u b j e c t i v e e x p e r i e n c e s a n d n e e d s f o l l o w i n g r a d i c a l s u r g e r y f o r g y n e c o l o g i c a l c a n c e r . S e l e c t i n g t h e P a r t i c i p a n t s T h e p a r t i c i p a n t s w e r e a t l e a s t t h r e e m o n t h s p o s t -s u r g e r y s o t h a t t h e y h a d r e c o v e r e d e n o u g h t o p a r t i c i p a t e a n d h a d a p e r i o d o f t i m e t o e x p e r i e n c e t h e s u r g e r y ' s e f f e c t s o n s e l f - i m a g e a n d s e x u a l i t y . In a d d i t i o n , t h e p a r t i c i p a n t s w e r e s e l e c t e d o n l y i f t h e y h a d a f a v o r a b l e p r o g n o s i s t o a v o i d t h e n e g a t i v e e f f e c t s o f d e a l i n g w i t h s p r e a d i n g c a n c e r . A l l p a r t i c i p a n t s h a d l i v e d a t l e a s t f i v e y e a r s i n N o r t h A m e r i c a n s o c i e t y a n d h a d s u f f i c i e n t E n g l i s h t o p r o v i d e c l e a r d e s c r i p t i o n s . T h e p a r t i c i p a n t s a l s o h a d t o l i v e w i t h i n a d a y ' s c a r t r a v e l f r o m t h e r e s e a r c h e r s o t h a t p e r s o n a l i n t e r v i e w s c o u l d b e a r r a n g e d . W i t h t h e a s s i s t a n c e o f a V a n c o u v e r s u r g e o n , t h e f i v e women who m e t t h e s e l e c t i o n c r i t e r i a w e r e c o n t a c t e d a n d i n f o r m e d a b o u t t h e s t u d y . A l l f i v e a g r e e d t o p a r t i c i p a t e a n d r e c e i v e d a c o n s e n t f o r m ( A p p e n d i x A ) w h i c h o u t l i n e d t h e s t u d y ' s p u r p o s e a n d t h e r i g h t s o f r e s e a r c h p a r t i c i p a n t s . A g e n e r a l d e s c r i p t i o n o f t h e s e p a r t i c i p a n t s i s f o u n d a t t h e b e g i n n i n g o f C h a p t e r F o u r . E t h i c a l C o n s i d e r a t i o n s B e f o r e t h e s e p a r t i c i p a n t s w e r e c o n t a c t e d , t h e U n i v e r s i t y of B r i t i s h Columbia's Screening Committee f o r Research Involv i n g Human Subjects reviewed and approved the e t h i c a l aspects of the study. For example, the p a r t i c i p a n t s were informed of t h e i r r i g h t s as r e s e a r c h s u b j e c t s , i n c l u d i n g the assurance that t h e i r i d e n t i t i e s would be kept c o n f i d e n t i a l . C o n f i d e n t i a l i t y was maintained by coding names so the p a r t i c i p a n t s ' i d e n t i t i e s were known only to the r e s e a r c h e r . In a d d i t i o n , only the r e s e a r c h e r and her t h e s i s committee had access to the i n t e r v i e w tapes and t r a n s c r i p t s . Since the number of p a r t i c i p a n t s was s m a l l , other i d e n t i f y i n g i n f o r m a t i o n ; such as age, e t h n i c i t y , date and type of surgery, and f a m i l y s t a t i s t i c s were only g e n e r a l l y d e s c r i b e d . Further e t h i c a l c o n s i d e r a t i o n was given to the r i s k s and b e n e f i t s of t h i s study. For example, there was a need f o r s e n s i t i v i t y when d i s c u s s i n g intimate or emotional experiences with the p a r t i c i p a n t s . The surgeon and the t h e s i s committee b e l i e v e d , however, t h a t the p a r t i c i p a n t s would b e n e f i t from e x p r e s s i n g t h e i r f e e l i n g s w i t h i n the s u p p o r t i v e environment which the r e s e a r c h e r would pr o v i d e d u r i n g the i n t e r v i e w s . C o l l e c t i o n of Data Using the phenomenological r e s e a r c h method, the r e s e a r c h e r at tempted to s tudy these women's e x p e r i e n c e s p u r e l y as they d e s c r i b e d them, w i thout p r e c o n c e i v e d e x p e c t a t i o n s of what would be found (Ornery, 1983). The r e s e a r c h e r a l s o at tempted to a v o i d assumpt ions by encourag ing the women to d e s c r i b e those e x p e r i e n c e s and needs which they p e r c e i v e d as s i g n i f i c a n t . In o ther words, the aim of u s i n g the phenomenologica l r e s e a r c h method in t h i s s tudy was to make human b e h a v i o r v i s i b l e and u n d e r s t o o d , not by examining h y p o t h e s e s , but by the a n a l y s i s of i n d i v i d u a l s ' s p e c i f i c , d e t a i l e d p e r c e p t i o n s of t h e i r e x p e r i e n c e s (Benner , 1985). F u r t h e r m o r e , the phenomenologica l r e s e a r c h method s p e c i f i e s t h a t a l l s u b j e c t i v e d a t a , i n c l u d i n g a l l of the p a r t i c i p a n t s ' memories and i n s i g h t s , are r e l e v a n t and v a l i d in the development of s c i e n t i f i c meaning. T h e r e f o r e , the s t u d y ' s i n t e r v i e w s were t a p e - r e c o r d e d in o rder to i n c l u d e a l l of the women's d e s c r i p t i o n s . These t a p e - r e c o r d i n g s were s u b s e q u e n t l y typed v e r b a t i m i n t o t r a n s c r i p t s and a n a l y z e d . The r e s e a r c h e r at tempted to deve lop r a p p o r t w i th the p a r t i c i p a n t s and show b e l i e f in each woman's unique p e r c e p t i o n s of r e a l i t y s i n c e s u b j e c t i v e d e s c r i p t i o n s are o f f e r e d most r e a d i l y w i t h i n an atmosphere of r e c i p r o c a l s h a r i n g and t r u s t (MacPherson, 1983). In a d d i t i o n , the r e s e a r c h e r helped the women f e e l t h a t t h e i r experiences and needs were s i g n i f i c a n t which a l s o encouraged them t o give d e t a i l e d d e s c r i p t i o n s of t h e i r experiences. Furthermore, the p a r t i c i p a n t s were more l i k e l y to o f f e r d e t a i l e d d e s c r i p t i o n s when the researc h e r used the techniques of r e f l e c t i v e l i s t e n i n g , c l a r i f i c a t i o n of que s t i o n s , and open-ended questions during the in t e r v i e w s ; f o r example: "You s a i d you f e l t shocked...?" "So, you are sa y i n g t h a t you weren't prepared f o r the recovery p e r i o d , i s t h a t r i g h t ? " "What were your r e a c t i o n s when you found out about needing the sur g e r y ? " The c o l l e c t i o n of data could have extended to se v e r a l i n t e r v i e w s as the p a r t i c i p a n t s developed awareness and a gr e a t e r a b i l i t y to d e s c r i b e t h e i r e x periences. However, data c o l l e c t i o n f o r t h i s study ended when there were s u f f i c i e n t t r a n s c r i p t s to produce a u s e f u l , beginning d e s c r i p t i o n of experiences and needs a f t e r r a d i c a l surgery f o r g y n e c o l o g i c a l cancer. The re s e a r c h e r found t h a t two in t e r v i e w s with each woman produced enough data f o r t h i s purpose. The second i n t e r v i e w was used to expose c o n t r a d i c t i o n s and commonalities i n the data. For example, four women d e s c r i b e d a r e l u c t a n c e to share t h e i r d i a g n o s i s with others during the f i r s t i n t e r v i e w s . In her second i n t e r v i e w , the f i f t h woman was s p e c i f i c a l l y asked i f she a l s o f e l t t h i s r e l u c t a n c e . The women were a l s o asked to add f u r t h e r i n s i g h t s and c o n f i r m t h a t the content of the f i r s t i n t e r v i e w was a c t u a l l y what they meant to express. These second i n t e r v i e w s , t h e r e f o r e , increased the i n t e r n a l v a l i d i t y of common themes among the women's experiences a f t e r surgery. A n a l y s i s of Data Phenomenological r e s e a r c h e r s b e l i e v e t h a t c o l l e c t i n g s u b j e c t i v e d e s c r i p t i o n s of r e a l i t y adds v a l i d knowledge about human behavior. Feminist r e s e a r c h e r s agree t h a t a n a l y z i n g s u b j e c t i v e r e a l i t y produces v a l i d know 1 edge: ...I do not s u b s c r i b e t o the b e l i e f t h a t knowledge n e c e s s a r i l y stems from detachment and measurement, c a r r i e d out from some f i c t i v e Archimedean p o i n t " o u t s i d e " of the r e a l i t y under c o n s i d e r a t i o n . Rather, I s i d e with those who b e l i e v e t h a t understanding s p r i n g s from immersion, from empathy, involvement, and committment ( E i s e n s t e i n , 1983, p. xx). Knowledge deve loped from the p r o c e s s of a n a l y z i n g s u b j e c t i v e data i s e s p e c i a l l y r e l e v a n t to n u r s i n g p r a c t i c e as nurses t r a d i t i o n a l l y a s s e s s an i n d i v i d u a l ' s s u b j e c t i v e needs when p l a n n i n g ca re (Anderson , 1981; Benner , 1985; Ornery, 1983). However, the p r o c e s s of a n a l y z i n g da ta in a phenomenologica l s tudy i s n e c e s s a r i l y l e n g t h y , r i g o r o u s , and c r e a t i v e . In summary: The r e s e a r c h e r c o n s i d e r s the typed t r a n s c r i p t s in t h e i r t o t a l i t y and then c r e a t e s major concep tua l c a t e g o r i e s to c a p t u r e the essence of the d a t a . The r e s e a r c h e r then r e d u c e s , compares, and expands these major c a t e g o r i e s by u s i n g a d d i t i o n a l i n t e r v i e w s wi th the same p a r t i c i p a n t s . These c a t e g o r i e s are e x p l a i n e d u s i n g everyday language which has meaning f o r o t h e r s . F i n a l l y , the r e s e a r c h e r i n v i t e s those wi th e x p e r i e n c e in the s t u d y ' s i s s u e s to o f f e r t h e i r i n s i g h t s in o rder to g a i n r e l i a b i l i t y f o r the s t u d y ' s f i n d i n g s (adapted from Ornery, 1983, p. 57 ) . Summary The phenomenologica l r e s e a r c h method was chosen f o r t h i s s tudy to p r o v i d e g u i d e l i n e s f o r d e v e l o p i n g meaning from l a r g e amounts of s u b j e c t i v e d a t a . T h i s method i s a l s o c o m p a t i b l e wi th a f e m i n i s t p e r s p e c t i v e . Us ing t h i s method, l a r g e amounts of s u b j e c t i v e data were gathered d u r i n g i n t e r v i e w s wi th f i v e p a r t i c i p a n t s . These da ta were a n a l y z e d and o r g a n i z e d i n t o t h r e e major c a t e g o r i e s as a means to communicate t h i s s t u d y ' s f i n d i n g s on women's e x p e r i e n c e s and needs f o l l o w i n g r a d i c a l surgery f o r g y n e c o l o g i c a l c a n c e r . A d i s c u s s i o n of the t h r e e major c a t e g o r i e s and examples from the r e s e a r c h data are p r e s e n t e d in Chapter F o u r . C H A P T E R FOUR R A D I C A L SURGERY FOR G Y N E C O L O G I C A L CANCER WOMEN'S E X P E R I E N C E S AND N E E DS I n t r o d u c t i o n O v e r 10 h o u r s o f r e c o r d e d i n t e r v i e w s w i t h 5 p a r t i c i p a n t s w e r e t r a n s c r i b e d a n d t h e n a n a l y z e d . T h e s t u d y ' s f i n d i n g s w e r e t h e n d e v e l o p e d i n t o t h r e e m a j o r c a t e g o r i e s w i t h s u b - h e a d i n g s : I . F i n d i n g O u t A b o u t H a v i n g G y n e c o l o g i c a l C a n c e r 1. S e n s i n g T h a t S o m e t h i n g Was W r o n g 2. R e a c t i n g T o T h e C a n c e r D i a g n o s i s 3. N e e d i n g S u p p o r t F r o m O t h e r s 4. U n d e r s t a n d i n g T h e S u r g e r y I I . P h y s i c a l R e c o v e r y A f t e r R a d i c a l S u r g e r y F o r  G y n e c o l o g i c a l C a n c e r 1. N e e d i n g T i m e t o R e g a i n S t r e n g t h 2. B o w e l A n d B l a d d e r P r o b l e m s 3. V a g i n a l H e a l i n g A n d R e c o n s t r u c t i o n I I I . S e l f - i m a g e A f t e r R a d i c a l S u r g e r y F o r G y n e c o l o g i c a l C a n c e r 1. B e l i e f s A n d F e e l i n g s A b o u t C a n c e r 2. C h a n g e s In B o d y S t r u c t u r e A n d F u n c t i o n 3. P e r c e p t i o n O f S e l f - W o r t h G e n e r a l i n f o r m a t i o n a b o u t t h e p a r t i c i p a n t s i s p r o v i d e d b e f o r e t h e s t u d y ' s f i n d i n g s a r e d i s c u s s e d . The P a r t i c i p a n t s F i v e women took pa r t in t h i s s t u d y . Four women had e x p e r i e n c e d the r a d i c a l s u r g e r y 12 to 18 months b e f o r e the f i r s t i n t e r v i e w . One woman had e x p e r i e n c e d the r a d i c a l su rgery 4 years b e f o r e the f i r s t i n t e r v i e w . The ages of the women, at the t ime of e x p e r i e n c i n g r a d i c a l s u r g e r y , were 27, 31, 39, 40, and 66 y e a r s . Three women were r a i s e d in Canada, 1 in Europe , and 1 in A s i a . One woman had p r a c t i c e d p r o f e s s i o n a l n u r s i n g 10 years ago, and one had p r a c t i c e d midwi fe ry 20 years ago. One woman d i d not have c h i l d r e n , 3 had young c h i l d r e n , and 1 had a d u l t c h i l d r e n . Two women were l i v i n g wi th male p a r t n e r s and c h i l d r e n , 1 was d i v o r c e d and l i v i n g wi th her pa ren ts and her c h i l d r e n , and 2 were d i v o r c e d or s i n g l e and l i v i n g a l o n e . One woman was a c t i v e in her c a r e e r , 2 were mothers and a l s o a s s i s t e d wi th t h e i r p a r t n e r s ' c a r e e r s , 1 was r e t i r e d from her work, and 1 was a s tudent and mother . Four women d e s c r i b e d t h e i r e x p e r i e n c e wi th sexual in t imacy a f t e r t h i s s u r g e r y . Three women were d iagnosed wi th v a g i n a l c a n c e r . Of t h e s e t h r e e , 2 women had had v a g i n a l r e c o n s t r u c t i o n at the same t ime as the r a d i c a l s u r g e r y . One woman, who d i d not have v a g i n a l r e c o n s t r u c t i o n , was p l a n n i n g f o r r e c o n s t r u c t i o n . One woman was diagnosed with cancer of the c e r v i x and had experienced two major s u r g e r i e s . The f i r s t was a hysterectomy and the second, due to metastases, r e q u i r e d a p a r t i a l vaginectomy and removal of part of the bladder. T h i s woman d i d not have v a g i n a l r e c o n s t r u c t i o n . One woman was diagnosed with cancer of the uterus a l s o had two s u r g e r i e s due to metastases. She had a hysterectomy and then, s e v e r a l months l a t e r , had her vagina and bladder removed. She d i d not have v a g i n a l r e c o n s t r u c t i o n . A l l 5 women had t h e i r uterus removed. Three women a l s o had o v a r i e s removed and a l s o had r a d i a t i o n treatment. Two of these women were t a k i n g estrogen replacement medication. The women's experiences and needs in the three major c a t e g o r i e s are d i s c u s s e d and compared with r e l a t e d l i t e r a t u r e . The a b b r e v i a t i o n s , "P" and "R," stand f o r p a r t i c i p a n t and r e s e a r c h e r . The f i r s t major category developed from the women's d e s c r i p t i o n s of events and f e e l i n g s surrounding t h e i r experience of f i n d i n g out about having g y n e c o l o g i c a l cancer. T h e i r experiences and needs are presented under four sub-headings. 37 I. FINDING OUT ABOUT HAVING GYNECOLOGICAL CANCER The women's experiences and needs are presented under four headings: 1. Sensing That Something Was Wrong P r i o r to the cancer d i a g n o s i s , 4 women n o t i c e d t h a t they had p h y s i c a l symptoms such as abnormal v a g i n a l b l e e d i n g , f o u l v a g i n a l d i s c h a r g e , and c y s t s or lumps in the vagina. One woman had an abnormal Pap t e s t as the f i r s t symptom. These p h y s i c a l symptoms caused the women to o b t a i n medical treatment. For v a r i o u s reasons, 4 women experienced a s i g n i f i c a n t delay between going f o r medical advice and the cancer being diagnosed: P: From there I went f o r weeks being on p e n i c i l l i n and a l l s o r t s of s t u f f to t r y and c l e a r up these i n f e c t i o n s . I must have been back at the doctor's t h r e e or four times. The doctor f i n a l l y saw something, and t h e r e was q u i t e a b i t , and she sent me to see the g y n e c o l o g i c a l r e s i d e n t . P: But I was pregnant so the D & C was put o f f , meanwhile t h i s c y s t kept growing and growing u n t i l i t was a c t u a l l y p r o t r u d i n g out of the vagina whenever I exerted p r e s s u r e , and I went back and s a i d , "Hey, something's wrong," and again they s a i d , "Nothing's wrong," but when they removed i t , 38 something was wrong. This one p a r t i c u l a r time I f e l t t h i s c y s t t h i s f e e l i n g of c o l d t e r r o r swept through my e n t i r e body. The second I touched i t , somehow, i n t u i t i v e l y , I must have known th a t something was wrong. I d i d n ' t acknowledge i t , a l l I f e l t was t h i s i n c r e d i b l e t e r r o r and f e a r ; my body j u s t went i c e - c o l d ; I couldn't warm up; I was j u s t so c o l d and so a f r a i d . Other women a l s o remembered having uncomfortable, i n t u i t i v e f e e l i n g s t h a t something was s e r i o u s l y wrong with t h e i r h e a l t h even before cancer was suspected by t h e i r p h y s i c i a n s : P: I a c t u a l l y knew something was wrong before the doctors knew. A l i t t l e b i t of s p o t t i n g and I t o l d the doctor about i t because t h i s had been going on f o r s e v e r a l months and she j u s t s a i d , "Oh, i t ' s the b i r t h c o n t r o l p i l l . " I s t a r t e d t o get t h i s r e a l l y bad d i s c h a r g e . It got r e a l l y f o u l s m e l l i n g , and I f e l t i n s i d e myself, and I could f e e l a lump. So I went to the doctor and she couldn't f e e l anything and she thought t h a t I was f e e l i n g some s t o o l (through the va g i n a l w a l l ) . I knew th a t there was something r e a l l y wrong...I was r e a l l y a f r a i d , I was c e r t a i n t h a t t h i s was s e r i o u s , and in f a c t I had some strange thoughts in the months preceding t h a t . I remember asking my doctor about i n f e c t i o n s , and I j u s t had t h i s funny sense t h a t there was some reason why I wouldn't be able to have k i d s . I don't know how to e x p l a i n t h a t . I've always been r e a l l y h e a l t h y , so my doctor wasn't looking f o r i t ; I'm sure she checks every one of her p a t i e n t s now. It may not have been p o s s i b l e f o r p h y s i c i a n s to diagnose the cancer at the time t h a t the women sensed something was s e r i o u s l y wrong. However, h e a l t h p r o f e s s i o n a l s have been known to l a b e l i n t u i t i v e f e e l i n g s as female h y s t e r i a or c r a z i n e s s . For example, in a study by Thorne (1986), the f o l l o w i n g communication between a woman and her p h y s i c i a n was d e s c r i b e d : "One woman r e c a l l e d an i n c i d e n t t h a t had occur r e d p r i o r to her d i a g n o s i s with cancer. Suspecting t h a t she might have cancer, she requested a thorough examination only to be c a l l e d a 'crazy hypochondriac' by her p h y s i c i a n " (Thorne, 1988, p. 169). In a d d i t i o n , women may be r e l u c t a n t t o share t h e i r i n t u i t i v e f e e l i n g s with p h y s i c i a n s s i n c e many women b e l i e v e t h a t they should not take up too much of a p h y s i c i a n ' s time. As Roberts (1985) p o i n t s out, "Women are i n do c t o r s ' most t r o u b l e category because they are seen as making e x c e s s i v e demands. There i s a deeply embedded n o t i o n i n most women that they shouldn't 'bother' the docto r " (Roberts, 1985, p. 7). A woman's i n t u i t i v e f e e l i n g s could be t r i g g e r e d by previous experiences, n e v e r t h e l e s s , they may s t i l l t u r n out to be c o r r e c t . For example, one woman in the study not only sensed something was wrong, she a l s o "knew" th a t the d i a g n o s i s would be cancer. T h i s woman's i n t u i t i v e f e e l i n g s were r e l a t e d to her experience with a f r i e n d who died from breast cancer: P: One time when I went f o r a Pap smear I mentioned to my doctor t h a t I was l e a r n i n g to r i d e a horse and everytime I r i d e I have a l i t t l e b l e e d i n g so they di d a biopsy. Then they d i d a deeper biopsy a month l a t e r . When they take a l i t t l e b i t of your t i s s u e and i t comes back and they s a i d they don't know what i t i s , they want to have some more deeper samples, then I knew th a t there i s something wrong, and i f there i s something wrong, then t h a t ' s what i t i s . . . I j u s t knew, t h a t ' s what i t i s (cancer.) When I went th e r e I was almost sure she was going to say t h a t ' s what i t i s , and i t was. A f r i e n d of mine, the same age, had brea s t cancer and i t got in t o her l i v e r and in a few months she was gone. I don't know, i t ' s j u s t a f e e l i n g t h a t I have the same t h i n g , but not in my b r e a s t . Before the a c t u a l d i a g n o s i s of cancer was made, the women's i n t u i t i v e f e e l i n g s t h a t something was s e r i o u s l y wrong were p a r t i c u l a r l y s i g n i f i c a n t . The women's d e s c r i p t i o n s showed t h a t even s u s p e c t i n g a d i a g n o s i s of cancer caused extreme f e a r and a n x i e t y . The need f o r s e n s i t i v e and s u p p o r t i v e communications from h e a l t h p r o f e s s i o n a l s at t h i s time are confirmed in Thome's (1988) study on cancer commmunications. " I n d i v i d u a l s perhaps become v u l n e r a b l e and s e n s i t i v e when they suspect cancer and, t h e r e f o r e , even undiagnosed i n d i v i d u a l s need p a r t i c u l a r types of 'cancer communications' from h e a l t h p r o f e s s i o n a l s " (Thorne, 1988, p. 171). The women a l s o d e s c r i b e d t h e i r r e a c t i o n s to being t o l d t h a t the d i a g n o s i s was cancer which r e q u i r e d e x t e n s i v e surgery. T h e i r experiences and needs at t h i s time are d i s c u s s e d under the next heading. 42 2. Reacting To The Cancer Diagnosis The women's r e a c t i o n s t o being t o l d t h a t they had cancer were i n f l u e n c e d by t h e i r b e l i e f s about cancer and t h e i r usual coping behaviors in times of sudden and severe s t r e s s . They a l l , however, d e s c r i b e d f e e l i n g shock, f e a r , g r i e f , and i s o l a t i o n from o t h e r s : P: I t ' s a scarey t h i n g ; I've never been scared; I've never been s i c k i n my l i f e , so t h i s was shocking. I t o l d myself, i f i t re o c u r r e d , I would never take chemotherapy because I've seen what i t does. I'd j u s t leave i t l i k e t h a t . That time that you're w a i t i n g f o r your death; j u s t d i s a p p e a r i n g in f r o n t of your eyes; i t ' s l i k e t o r t u r e . Such intense f e e l i n g s are to be expected. The g r e a t e s t degree of p s y c h o l o g i c a l alarm i s caused by a d i a g n o s i s of cancer when compared t o the degree of alarm caused by four other major dis e a s e s (Knopf, 1976). Four of the women were alone i n a p h y s i c i a n ' s o f f i c e or a h o s p i t a l treatment room when t o l d that they had cancer. The women d i d not p e r c e i v e r e c e i v i n g emotional support from the p h y s i c i a n who t o l d them. One woman d e s c r i b e d t h a t she f i n a l l y r e a c t e d t o the cancer d i a g n o s i s while d r i v i n g home from the p h y s i c i a n ' s o f f i ce: P: It j u s t d i d n ' t h i t me in the o f f i c e . When I was on the way home though, and s t a r t e d t h i n k i n g about i t , and j u s t the knowledge that my f r i e n d died of i t ; I j u s t f e l t ; " I t ' s my end." I d i d n ' t know anything about cancer. It was a c o l d t h i n g ; "You have cancer. If you need a nerve p i l l you can get some i f you c a l 1 me." One woman was telephoned at home and t o l d t h a t she had cancer. However, she d i d not r e a l i z e the se r i o u s n e s s of the cancer d i a g n o s i s u n t i l she went to the s p e c i a l i s t ' s o f f i c e . Once the r e , her f i r s t i n t e n s e emotional r e a c t i o n was to being t o l d t h a t she should not continue her pregnancy. T h i s r e a c t i o n i n h i b i t e d her a b i l i t y to communicate with the p h y s i c i a n , and the p h y s i c i a n misunderstood the reason f o r her emotional d i s t r e s s . When she suddenly r e a l i z e d the s e r i o u s n e s s of the d i s e a s e , she f e l t a p h y s i c a l s e n s a t i o n l i k e a blow and then emotional shock: P: When he phoned me and s a i d , " I t ' s cancer," I wasn't r e a l l y upset because i t never even occurred to me tha t i t was more s e r i o u s than an e a r l y case of cancer of the c e r v i x , and I thought they could j u s t cut i t out. It wasn't u n t i l I had the f i r s t appointment with the s p e c i a l i s t and he walked i n and sat down and s t a r t e d to t e l l me t h a t i t was very s e r i o u s ; q u i t e deadly. The f i r s t d e c i s i o n I had to make was whether or not to continue my pregnancy. I was t r y i n g to ask, "Would I be able to have any more babies?", and everytime I opened my mouth, I s t a r t e d to c r y , I couldn't get the words out. F i n a l l y , a f t e r my t h i r d t r y , he looked at me and s a i d , "Oh, you want to know how long you have to l i v e ? " It f e l t as though someone had kicked me in the stomach, because i t had never even crossed my mind, and t h a t ' s when i t h i t me, and I thought, "Oh no, t h i s i s something even more s e r i o u s than I thought," and I went i n t o shock. They s a i d , "Oh, you want to know how long you have to l i v e ? Your chances are about 50/50, a f t e r the surgery." And I phoned my doctor i n Boston, and he was mad t h a t the doctor here had s a i d t h a t . He s a i d , "There are no such t h i n g s as s t a t i s t i c s ; I ' l l t e l l you a s t a t i s t i c and y o u ' l l become a s t a t i s t i c , but i t doesn't have to be t h a t way." Later on my doctor here gave me a 70/30 chance of 1i v i ng. The women a l l had e i t h e r negative or n e u t r a l memories about the manner in which p h y s i c i a n s t o l d them the cancer d i a g n o s i s . Thome's (1988) study on communication in cancer care showed t h a t cancer p a t i e n t s u s u a l l y remember communications with h e a l t h p r o f e s s i o n a l s as being " u n h e l p f u l " at t h i s time. "Unhelpful communications are those p e r c e i v e d as f r u s t r a t i n g , impeding or de m o r a l i z i n g beyond what seemed necessary under the circumstances" (Thorne, 1988, p. 168). Thorne (1988) concludes t h a t f u r t h e r r e s e a r c h i n t o t h i s area i s r e q u i r e d to understand why negative communications with h e a l t h p r o f e s s i o n a l s are so f r e q u e n t l y r e c a l l e d : P a t i e n t s do r e c a l l h e a l t h care communications as important aspects of the cancer experience and many of the communications they r e c a l l are d e c i d e d l y u n h e l p f u l . There i s some evidence t h a t the meaning of a p a r t i c u l a r communication might be v a r i o u s l y i n t e r p r e t e d during d i f f e r e n t phases of the cancer e x p e r i e n c e . . . i t seems obvious t h a t an inadequate knowledge base e x i s t s from which to generate communication p r i n c i p l e s that take the p a t i e n t ' s p e r s p e c t i v e i n t o account (Thorne, 1988, p. 171). The women s p e c i f i c a l l y r e c a l l e d the p h y s i c i a n ' s c h o i c e of words when e x p l a i n i n g the cancer d i a g n o s i s . For example, one woman s p e c i f i c a l l y r e c a l l e d t h a t the p h y s i c i a n used the term " i n o p e r a b l e " t o d e s c r i b e the cancer: P: It was a b i t of a shock when I f i r s t found out th a t I had cancer. The s p e c i a l i s t ; I guess h i s E n g l i s h wasn't t h a t great, and he s a i d , "Well, i t ' s i n o p e r a b l e , " and th a t probably wasn't the best c h o i c e of words f o r somebody to use. I s a i d , "Are you t r y i n g to t e l l me i t ' s t e r m i n a l ? " He h e s i t a t e d and s a i d , "No, I wouldn't n e c e s s a r i l y say t h a t . " He s a i d I had to have r a d i a t i o n before they would operate. A f t e r being t o l d the cancer d i a g n o s i s , the women immediately needed to know more about cancer and the upcoming surgery. Four women read books from c i t y or h o s p i t a l l i b r a r i e s . They d e s c r i b e d t h a t the inf o r m a t i o n they found about t h e i r cancer was h e l p f u l but a l s o f r i ghten i ng: P: They had a l i s t of cancers t h a t were best helped by r a d i a t i o n ; and I had squamous c e l l cancer, and th a t was f a i r l y high on the l i s t , so that was good. And I read a m a c r o b i o t i c book, and I looked through some t h i n g s i n t h e r e . They had some r e a l l y awful s t a t i s t i c s on cancer of the vagina, or cancer of the c e r v i x ; so I c l o s e d t h a t q u i c k l y and put i t away; l i k e we won't be paying any a t t e n t i o n t o them. From other s t u d i e s , i t i s known t h a t most i n d i v i d u a l s look f o r more in f o r m a t i o n very soon a f t e r l e a r n i n g t hat they have cancer. However, in f o r m a t i o n on cancer i s o f t e n d i f f i c u l t to f i n d and can be misunderstood (Morra, 1988). For example, one woman f e l t i n c reased a n x i e t y and c o n f u s i o n from the i n f o r m a t i o n in l i b r a r y books: P: At one p o i n t before the surgery I t r i e d to f i n d out e v e r y t h i n g about cancer and I went to the l i b r a r y and read e v e r y t h i n g about i t , but I found out t h a t i t scared me more to know more about i t , so I stopped. I d i d n ' t want to know I could get i t in t h i s organ, or I could l i v e f o r a year; I j u s t wanted to c l o s e the book and f o r g e t about i t , and I d i d n ' t r e a l l y want to know. Another woman r e a l i z e d , from reading a l i b r a r y book, what r a d i c a l surgery f o r v a g i n a l cancer could a c t u a l l y i n v o l v e . T h i s woman's s i t u a t i o n was unusual in t h a t she postponed surgery f o r s e v e r a l weeks u n t i l her baby was born. Her p h y s i c i a n , t h e r e f o r e , may have decided to withhold i n f o r m a t i o n from her about the p o s s i b l e extent of the r a d i c a l surgery u n t i l a f t e r the baby's b i r t h . However, t h i s woman f e l t e m o t i o n a l l y traumatized when she found out t h i s i n f o r m a t i o n on her own. She d i d not r e c a l l r e c e i v i n g emotional support from her p h y s i c i a n at t h i s time: P: I s t a r t e d to do some readi n g , t h a t ' s how I found o u t w h a t t h e s u r g e r y was g o i n g t o b e . I t s a i d i n t h e b o o k t h a t t h e y r e m o v e y o u r b l a d d e r , u t e r u s , c e r v i x , v a g i n a , p e l v i c l y m p h n o d e s , a n d m a y b e e v e n y o u r r e c t u m . I p h o n e d (my d o c t o r ) a n d I s a i d , " I s t h i s w h a t y o u ' r e g o i n g t o d o t o m e ? " A n d h e s a i d , i n a v e r y m a t t e r o f f a c t v o i c e , "Oh, y e s , o f c o u r s e , t h a t ' s w h a t w e ' r e g o i n g t o d o . " B u t n o o n e h a d t o l d me t h a t ; I h a d r e a d i t i n a b o o k a n d c o n f i r m e d i t . I j u s t h u n g up t h e p h o n e a n d w e n t a n d t h r e w u p . I'm s u r e h e d i d n ' t m e a n t o b e c a l l o u s , b u t I h a d n o n o t i o n , a n d i t was a g r e a t s h o c k . T h e r e h a d b e e n n o t h i n g d e f i n i t e s p o k e n o f , I was j u s t g o i n g t h r o u g h my p r e g n a n c y a n d b e i n g c h e c k e d . T h e y w e r e h o p i n g t h a t t h e y w o u l d f i n d t h a t i t was m u c h l e s s t h a n t h e y t h o u g h t , a n d t h a t t h e y c o u l d b e m o r e c o n s e r v a t i v e . T h e women may h a v e p e r c e i v e d h e a l t h c a r e c o m m u n i c a t i o n s t o b e c o l d a n d i n t e n t i o n a l l y u n h e l p f u l a t t h i s t i m e b e c a u s e t h e s e c o m m u n i c a t i o n s d i d n o t i n c l u d e e m o t i o n a l s u p p o r t a s w e l l a s f a c t u a l i n f o r m a t i o n . Y e t , t h e i n t e n s e l y u n c o m f o r t a b l e f e e l i n g s w h i c h t h e d i a g n o s i s o f c a n c e r c r e a t e s c a u s e d t h e women t o n e e d e m o t i o n a l s u p p o r t a t t h i s t i m e . T h e n e e d f o r e m o t i o n a l s u p p o r t i s c o n f i r m e d b y T h o m e ' s ( 1 9 8 8 ) f i n d i n g t h a t i n d i v i d u a l s w i t h c a n c e r p e r c e i v e h e a l t h care communications to be " h e l p f u l " when these communications are p e r c e i v e d as e m o t i o n a l l y s u p p o r t i v e . " H e l p f u l communications are those p e r c e i v e d by the p a t i e n t to be c o n s t r u c t i v e , encouraging or s u p p o r t i v e beyond what seemed necessary under the circumstances" (Thorne, 1988, p. 168). In a d d i t i o n t o needing emotional support, the women needed to f e e l t h a t immediate a c t i o n was being taken to t r e a t the cancer. One woman was able to act a s s e r t i v e l y to get t h i s need met and reduce her emotional d i s t r e s s : P: I got the r e s u l t s and they weren't going to l e t me go to the Cancer C l i n i c f o r another week and I s a i d , "No, i t can't be a week, l i k e what do you expect me to do i n the next week?" I stood t h e r e and ranted and raved u n t i l they made an appointment f o r me to go i n the next day. I had f e a r at f i r s t . The hardest part was w a i t i n g between the time I was f i r s t diagnosed to f i n d i n g out what they were going to do. As soon as I got to the c l i n i c and they were s c h e d u l i n g my r a d i a t i o n ; then I f e l t l i k e something was being done. There was t h i s d i r e c t i v e n e s s t h a t I was going to get b e t t e r and st r o n g e r . Another woman was t o l d t h a t she had to wait 8 weeks before her surgery could be booked. She d e s c r i b e d t h i s w a i t i n g p e r i o d as d i f f i c u l t to deal with, but commented t h a t she a l s o a p p r e c i a t e d the delay. The 2 month w a i t i n g p e r i o d gave her time to arrange home-making help during her recovery and to become calmer before the surgery took p l a c e : P: They t o l d me how they were going to do the surgery in a week or two, but then I had to wait another 6 weeks because one of the doctors was on h o l i d a y s . It was a long wait, I couldn't understand, i f somebody has cancer, i t should be done as soon as p o s s i b l e . But i t ' s a team that works together and i f they don't have the surgeon who does the r e c o n s t r u c t i o n , then they d i d n ' t want to use anybody e l s e . It gave me time to get t h i s p l a c e ready, too, i t ' s b i g , and my daughter would be alone. I f e l t l e s s upset a f t e r so long a wait, which was good. During the time t h a t they waited f o r surgery, the women a l s o began to t h i n k about dying, even when they were f a i r l y p o s i t i v e t h a t t h e i r cancer would be cured. They d e s c r i b e d an i n c r e a s e d awareness of l i f e and g r i e f f o r i t s p o s s i b l e l o s s : P: A f t e r I got to the c l i n i c , I got the f e e l i n g t h a t I was going to d i e ; l i k e a l o t , but I a l s o got the f e e l i n g t h a t I was being very well looked a f t e r , and t h a t I probably wasn't going to d i e . I was d e a l i n g with i t ; doing a l o t of reading on v i s u a l i z a t i o n techniques of the Simonton's. I f e l t l i k e i t was r e a l l y important f o r me to do something; the t h i n g s t h a t only I could do. For the f i r s t few weeks i f I'd go to a concert I wouldn't be l i s t e n i n g ; I'd be s i t t i n g t here t h i n k i n g ; "How much more time w i l l I have to l i s t e n to t h i s concert? W i l l I be here to do t h i s 6 months from now?" It was p r e t t y f r i g h t e n i n g ; but not panicky f r i g h t e n i n g . I thi n k I came to a p o i n t where i f I d i d d i e , I've had a good l i f e . Somehow, when I wasn't so a f r a i d of dying then I kind of knew th a t I wasn't going t o , but I d i d n ' t want to say t h a t I wasn't going to because I might! Although t h i s woman thought about her own death a f t e r l e a r n i n g about having cancer, she a l s o f e l t c o n fidence i n her a b i l i t y to recover. Even though her f a t h e r had died 5 years ago from cancer and she knew tha t the p h y s i c i a n s were u n c e r t a i n about her prognosis, she s t i l l f e l t t h a t having cancer d i d not always mean dy i ng. Another woman, however, had l i t t l e c onfidence i n her a b i l i t y to recover from cancer. She s t a t e d t h a t a recent experience with a f r i e n d who died from breast c a n c e r i n c r e a s e d h e r b e l i e f t h a t c a n c e r was u s u a l l y f a t a l . E v e n t h o u g h s h e was t o l d t h a t h e r p r o g n o s i s was g o o d , s h e f e l t c e r t a i n t h a t h a v i n g c a n c e r a l w a y s m e a n t d y i n g : P: T h e y t o l d me t h a t t h e c a n c e r was l o c a l i z e d , n o t v e r y d e e p , a n d t h e y c o u l d n ' t f i n d i t a n y w h e r e e l s e , s o t h a t was g o o d n e w s . B u t I w o u l d c ome o u t o f my r o o m a n d t h i n k , " W e l l , I'm n o t g o i n g t o b e a b l e t o s e e t h i s m u c h l o n g e r . " My f r i e n d d i e d y o u n g a n d i t d i d n ' t t a k e l o n g ; s o t h a t ' s w h a t I e x p e c t e d . I j u s t d i d n ' t n e e d a n y f r i e n d s o r a n y b o d y b e c a u s e I knew t h a t I'm n o t g o i n g t o s e e t h e m v e r y l o n g a n y w a y . When my d o c t o r f i r s t t o l d me w h a t i t w a s , I f e l t , " W e l l , I ' l l p r o b a b l y b e h e r e f o r a n o t h e r y e a r , a n d t h a t ' s i t . " T h e r e f o r e , t h e women h a d d i f f e r e n t b e l i e f s a n d f e e l i n g s a b o u t r e c o v e r y f r o m c a n c e r . T h e y n e e d e d t o d e s c r i b e a n d e x p r e s s t h e s e t h o u g h t s a n d f e e l i n g s i n o r d e r t o r e d u c e f e a r a n d a n x i e t y b e f o r e s u r g e r y . T h e a m o u n t o f d i s t r e s s t h a t t h e s e women e x p e r i e n c e d b e f o r e s u r g e r y i s a l s o s i g n i f i c a n t s i n c e t h e r e i s a t e n d e n c y f o r e m o t i o n a l l y d i s t r e s s e d p a t i e n t s t o r e c o v e r m o r e s l o w l y f r o m s u r g e r y ( M a t t h e w s a n d R i d g e w a y , 1 9 8 1 ) . T h e women a l s o r e a c t e d t o t h e c a n c e r d i a g n o s i s b y s o m e t i m e s f e e l i n g t h a t t h e d i a g n o s i s a n d p l a n s f o r surgery were unreal . They were aware that denying r e a l i t y reduced the i r emotional d i s t r e s s about having cancer and the upcoming rad ica l surgery: P: I t 's just not happening to you; how could i t happen to you? There were fee l ings that I would wake up at night and I would th ink , "Was that a dream?" I had to r e a l l y think and r e a l i z e that i t ' s not a dream and I have to deal with i t . It was hard; i t was probably the hardest before the surgery. Denial is a common react ion to intense psychological s t r e s s ; however, i t is a lso an indicator that emotional support is needed at th is time: P: It happened l ike i t was happening to somebody e lse most of the t ime, because I was pushing i t away. When I was in there, wait ing for my rad ia t ion treatments, I just came along for the r ide with somebody e l s e . And I guess I went in to surgery with that same kind of fee l ing as we l l ; I was just there for the r i d e ; I was there to be with the person who was going to have that . It gets r i d of a l1 the fear . One woman also stated that , s ince she did not feel " i l l , " denying the seriousness of the cancer was easy. Denial helped her to bel ieve that the surgery would not r e a l l y happen. She described how confront ing the r e a l i t y o f h e r s i t u a t i o n c a u s e d f e e l i n g s o f t e r r o r . S h e e x p e r i e n c e d mood s w i n g s f r o m a n x i e t y t o c a l m d u r i n g t h e w a i t i n g p e r i o d b e t w e e n d i a g n o s i s a n d s u r g e r y : P: I b e l i e v e d I w o u l d n ' t h a v e t o g o t h r o u g h w i t h t h i s ; m a y b e t h a t ' s how I d e a l t w i t h i t . I r e a l l y b e l i e v e d t h a t i t w o u l d n ' t c ome t o t h a t i n t h e e n d . . . t h a t t h e y w e r e g o i n g t o t e l l me i t w a s n ' t a s b a d ; t h e y c o u l d j u s t d o a w a t c h a n d w a i t i n s t e a d o f a t r e a t m e n t . I r e a l l y t h o u g h t I was g o i n g t o c u r e i t o n my own, I t h o u g h t ; " I'm p o s i t i v e e n o u g h , I'm s t r o n g e n o u g h , I'm g o i n g t o c o n q u e r t h i s t h i n g . " I h o n e s t l y b e l i e v e d t h a t u n t i l I my s u r g e o n s a i d , " Y o u h a v e t o d o t h i s . " I d i d n ' t t h i n k i t was r e a l l y g o i n g t o h a p p e n . On o n e s i d e I was c o m p l e t e l y a f r a i d , t e r r o r i z e d , a n d t h e n o n t h e o t h e r s i d e I was t h i n k i n g , " N o n s e n s e , " b e c a u s e I was g o i n g t h r o u g h t h e m o t i o n s o f n o r m a l l i v i n g . I t was h a r d f o r me t o g r a s p t h a t r e a l i t y ; e v e r y t h i n g s e e m e d s o n o r m a l . T h e s e f e e l i n g s o f u n r e a l i t y a n d d e n i a l w e r e a l s o s i g n i f i c a n t s i n c e t h e y c o u l d c o n t r i b u t e t o a woman's d e c i s i o n t o a v o i d t r e a t m e n t . O n e woman d a n g e r o u s l y d e l a y e d m e d i c a l f o l l o w - u p a n d t r e a t m e n t b e c a u s e o f h e r f e a r o f t h e d i s e a s e a n d c o n c e r n t h a t r a d i c a l s u r g e r y w o u l d i n c r e a s e h e r s e r i o u s f a m i l y p r o b l e m s . D e n i a l may have c o n t r i b u t e d to her misunderstanding of the p h y s i c i a n ' s e x p l a n a t i o n s : P: The cancer was in the beginning stages. The s p e c i a l i s t put me on t h i s program, t h a t f r e e z i n g ^ t h i n g to k i l l the c e l l s and a f t e r 1 year examined me again but i t d i d n ' t k i l l i t . So, he monitored me f o r 2 years and then he t o l d me that I must have a hysterectomy. I got very s c a r e d . He s a i d , "You should go to your f a m i l y doctor; decide, and come back." I d i d n ' t go to my f a m i l y doctor because the s p e c i a l i s t s a i d i t was not malignant, j u s t s t a r t i n g . I was i n a depression at t h a t time; I couldn't decide to have the o p e r a t i o n ; so I j u s t waited. Although t h i s woman had worked as a nurse with cancer p a t i e n t s 10 years p r e v i o u s l y , her anxiety about the r e p e r c u s s i o n s t h a t r a d i c a l surgery might have on her f a m i l y and work outweighed her p r o f e s s i o n a l knowledge. She a l s o may not have understood t h a t the cancer c e l l s were in a s e r i o u s stage, but t h i s seems u n l i k e l y to be the main reason f o r d e l a y i n g follow-up f o r almost 1 year. Her emotional d i s t r e s s about having cancer and r a d i c a l surgery, compounded by depression about her f a m i l y l i f e , were the main reasons f o r t h i s dangerous delay. The long-term e f f e c t s of the p s y c h o l o g i c a l trauma w h i c h r e s u l t s f r o m b e i n g t o l d a b o u t h a v i n g g y n e c o l o g i c a l c a n c e r a n d n e e d i n g r a d i c a l s u r g e r y a r e u n k n o w n . T h i s t r a u m a may c o n t r i b u t e t o t h e f i n d i n g t h a t women w i t h g y n e c o l o g i c a l c a n c e r h a v e p r o l o n g e d p r o b l e m s w i t h r e g a i n i n g e m o t i o n a l s t a b i l i t y a f t e r s u r g e r y ( K r o u s e a n d K r o u s e , ( 1 9 8 2 ) . T h e women a l s o d e s c r i b e d t h e i r n e e d f o r s u p p o r t f r o m o t h e r s a f t e r b e i n g t o l d t h e c a n c e r d i a g n o s i s . T h i s n e e d i s d i s c u s s e d u n d e r t h e n e x t h e a d i n g . 57 3. Needing Support From Others The women needed p h y s i c a l and emotional support from others a f t e r being t o l d the cancer diagnoses. Although they r e c e i v e d adequate p h y s i c a l support, f o r example, r i d e s to the h o s p i t a l , homemaking, and p h y s i c a l n u r s i n g care, most of these women d i d not appear to r e c e i v e adequate emotional support from o t h e r s : P: I had to express a l o t of emotion i n the l a s t 18 months; a l o t had to come out. E s s e n t i a l l y , I'm a very p r i v a t e , s o r t of shy person; not given to expr e s s i n g extreme f e e l i n g s to people and, u s u a l l y , cool and composed. No e f f o r t was made to deal with the emotional s i d e of i t , and t h a t ' s what concerned me, because to me, th a t was the most s e r i o u s p a r t of a l l . One reason f o r not r e c e i v i n g adequate emotional support was th a t having cancer o f t e n caused the women to emo t i o n a l l y withdraw from o t h e r s : P: I t r i e d to hide my f e e l i n g s as u s u a l . I'm l i k e t h a t , when I have a problem, I want t o be alone; I don't want to share i t with anybody. I'm s i l l y t h i s way because I expect people t o know what I'm f e e l i n g but they can't know u n t i l I t e l l them. In a d d i t i o n , the women o f t e n d i d not ask f o r emotional support because they f e l t t h a t they must remain e m o t i o n a l l y s t r o n g and not worry o t h e r s ; e s p e c i a l l y f a m i l y members: P: I never t a l k e d about my s i c k n e s s to anybody, not even my daughter or son; they were the l a s t ones I would have t a l k e d anything about i t . I guess I must be a f a i r l y good a c t r e s s f o r t h a t because I always put on an act t h a t I'm not as s i c k as I am. I don't want to l e t them know; I don't want them to worry about me. Many i n d i v i d u a l s b e l i e v e t h a t they should be emo t i o n a l l y strong which means not showing sadness, f e a r , or a n x i e t y . However, the women's concern about not worrying f a m i l y members i s probably caused by the b e l i e f t h a t the female r o l e i s mainly one of c a r i n g f o r others but denying her own needs: P s y c h o a n a l y t i c w r i t i n g s in the middle of t h i s century i n s i s t e d t h e r e was a need f o r female s e l f -d e n i a l . The path to healthy a d u l t f e m i n i n i t y , a c c o r d i n g to the experts, was paved with s e l f -s a c r i f i c e . Everyone e l s e in the f a m i l y l i v e d f o r themselves, and she l i v e d f o r them ( E h r e n r e i c h and E n g l i s h , 1978, pp. 269 - 270). T h i s p e r s u a s i v e and i n f l u e n t i a l medical d i s c o u r s e has caused women to f e e l t h a t a c e n t r a l part of the female r o l e i s to put the needs of others before one's own. T h i s b e l i e f p a r t i c u l a r l y i n h i b i t s women from asking f o r emotional support from t h e i r f a m i l i e s : P: I d i d n ' t want t o bother my husband because he was very c l o s e to a heart attack 2 years ago. I s t i l l b e l i e v e I can help myself. I always b e l i e v e d t h a t a person can help themselves i f they want t o . The women a l s o were unable to ask f o r emotional support because they were r e l u c t a n t to t a l k with others about having cancer. They b e l i e v e d t h a t they might be p i t i e d , t r e a t e d d i f f e r e n t l y , or even r e j e c t e d i f others knew about the cancer. P: I don't l i k e people to f e e l s o r r y about me, so I don't t e l l people. I don't l i k e sympathy. I don't l i k e people t a l k i n g about me. The women's b e l i e f s t h a t they would be t r e a t e d d i f f e r e n t l y by others may be due to f e e l i n g s of shame about having g y n e c o l o g i c a l cancer. Medical experts have d e s c r i b e d t h a t there may be a l i n k between g y n e c o l o g i c a l cancer and e x c e s s i v e and unnatural sexual a c t i v i t y : F e e l i n g s of stigma are e x p e c i a l l y l i k e l y when cancer has been l i n k e d with s o c i a l l y unacceptable behavior, e.g.; the c l a i m t h a t c e r v i c a l cancer i s due to sexual p r o m i s c u i t y (Maguire, 1985, p. 100). However, t h i s s p e c i a l i s t on the p s y c h o l o g i c a l e f f e c t s of cancer d i d not go on to r e f u t e the c l a i m t h a t c e r v i c a l cancer i s due to sexual p r o m i s c u i t y a f t e r he had mentioned i t . Due to such statements from experts, although t h i s " c l a i m " i s not f a c t u a l , a stigma from having g y n e c o l o g i c a l cancer has developed. T h i s stigma appears to be a major reason f o r some women's emotional withdrawal from o t h e r s : P: I d i d n ' t know how they would take i t . I d i d n ' t t e l l anyone; I was r e a l l y m i s e r a b l e . I j u s t don't want them to know. I don't want to have t h a t f e e l i n g t h at there i s something wrong with me. I don't want them to p i t y me. I f e e l they're going to t r e a t me d i f f e r e n t l y , f e e l s o r r y f o r me, maybe r e j e c t me and not want to be f r i e n d s . T h i s woman became em o t i o n a l l y d i s t r e s s e d a year a f t e r the r a d i c a l surgery due to r e p r e s s i n g intense f e a r and shame about having had g y n e c o l o g i c a l cancer. In a d d i t i o n , the women's f r i e n d s and f a m i l y members o f t e n could not provide adequate emotional support. I n d i v i d u a l s who are e m o t i o n a l l y c l o s e to cancer p a t i e n t s a l s o become d i s t r e s s e d and may not be able to provide emotional support during t h i s time. S t u d i e s on the p s y c h o l o g i c a l e f f e c t s of cancer on f a m i l y f u n c t i o n i n g have found t h a t cancer generates great anxiety w i t h i n a f a m i l y and a l t e r s communication p a t t e r n s , r o l e s , and r e l a t i o n s h i p s among i t s members (Lewandowski and Jones, 1988, p. 313). The women r e c a l l e d t h a t f i n d i n g out the cancer d i a g n o s i s caused emotional d i s t r e s s f o r fa m i l y members: P: The worst t h i n g f o r me was when I came home and I had to t e l l everybody. My husband came, and s a i d , "Well, what d i d she t e l l you?", and I s a i d , "The worst p o s s i b l e t h i n g , " and I s t a r t e d to c r y . I t o l d him that i t ' s cancer and I guess my husband f e l t the same way because he was c r y i n g too. I wasn't scared f o r myself, but I d i d n ' t know what's going to happen to them i f something happens to me. My husband t o l d one of our f r i e n d s , but I d i d n ' t t e l l anybody. I j u s t wanted to be by myself and I cr i ed. One woman expected to r e c e i v e emotional support from her husband but he could not provide t h i s support. She f e l t r e j e c t e d and hurt when he d i d not comfort her. Due to t h i s r e j e c t i o n , she was r e l u c t a n t to expect f u r t h e r emotional support from o t h e r s : P: A l l I wanted was f o r my husband to put h i s arms around me and t e l l me, "Eve r y t h i n g ' s going to be ok, don't worry, nothing's wrong, y o u ' l l be ok, I ' l l be there f o r you." And he d i d n ' t do t h a t . We got i n t o bed t h a t n i g h t , and he moved over to the f a r s i d e and turned h i s back on me. And, again, I went i n t o shock, not as bad, but I couldn't b e l i e v e i t , I f e l t l i k e someone had h i t me, or kicked me. I was t r y i n g so hard to deal with what these doctors had t o l d me, and I wanted help and when my husband turned h i s back on me, I r e a l i z e d t h a t people d i d n ' t r e a l l y know how to deal with i t , not my husband, not my f a m i l y . I made the d e c i s i o n to do i t on my own, t a k i n g help, but never completely g i v i n g myself over to someone, even though t h a t was so badly what I wanted to do; j u s t to put my head on someone's shoulder and have them t e l l me " I t ' s ok, you can r e l a x , take i t easy, we're a l l here f o r you." That was very d i f f i c u l t ; how to l i v e with cancer, and I had to become independent from the very f i r s t day. T h i s woman understood t h a t her husband's behavior r e f l e c t e d h i s own emotional needs at t h i s s t r e s s f u l time, but h i s i n a b i l i t y to comfort her caused her to withdraw from him e m o t i o n a l l y . The cancer d i a g n o s i s and need f o r r a d i c a l surgery became a major f a c t o r in ending t h e i r already unhappy r e l a t i o n s h i p : P: He was concerned about me and he d i d care; he j u s t had no idea of how to deal with i t , so he j u s t clammed up and became completely d e f e n s i v e and p r o t e c t i v e of himself so that he wouldn't be hurt by my c o n d i t i o n and the s i t u a t i o n . As a r e s u l t I knew the marriage was over. I d i d n ' t want to make love, not with him; he f r i g h t e n e d me; he scared me; he made me angry. Another woman d e s c r i b e d being e m o t i o n a l l y abused by her partner at t h i s time: P: I had to get i t out, I knew t h a t . In order to l i v e , I had to get i t out. I f i g u r e d i t was a r e a l l y b i g surgery; I was r e a l l y nervous because I was s l a t e d f o r both bags. I was at home alone, w e l l , with my drunken husband, when I screamed. I th i n k the screams were mostly at him, because he annoyed me so much. I had so much to f a c e . I would scream at him to shut up. Maybe th a t gave me some r e l i e f . My husband s a i d to h i s f r i e n d s , "Never marry a s i c k woman." Health p r o f e s s i o n a l s d i d not appear to ask these women about t h e i r sources of emotional support u n t i l problems became obvious: P: The doctor s a i d , "Why d i d n ' t you t e l l me?" I s a i d , " T e l l you? You d i d n ' t ask me." I'm not going to t e l l the world t h a t I've got a drunken husband. That's another t h i n g they should do; have everybody quest i o n your husband or have the husband go i n together; the home l i f e should be put in the h i s t o r y ; f i n d out the whole p i c t u r e . The lack of adequate emotional support at t h i s time c o n t r i b u t e d to a delay in treatment f o r the woman who was concerned t h a t the surgery might destroy her f a m i l y . She d i d not t e l l her husband about her p o s s i b l e malignancy and waited 8 months before r e t u r n i n g f o r medical follow-up: P: I was scared about my f a m i l y . I was in a bad s i t u a t i o n between my husband and me, so I couldn't decide on the o p e r a t i o n ; I d i d n ' t want to wreck my f a m i l y . I was depressed at t h a t time, so I couldn't decide, so I j u s t waited. My husband was having an a f f a i r and e v e r y t h i n g made me upset, so I thought, maybe I'm supposed to d i e . I d i d n ' t t e l l my husband, j u s t one of my f r i e n d s . When her f a m i l y s i t u a t i o n improved, she returned f o r medical treatment. At t h i s time she was diagnosed with a r a p i d l y spreading c e r v i c a l malignancy which immediately r e q u i r e d a hysterectomy and r a d i a t i o n . In a d d i t i o n , s e v e r a l months l a t e r , the cancer r e t u r n e d . She then r e q u i r e d r a d i c a l surgery which removed part of her vagina and bladder. Two days p r i o r to the r a d i c a l surgery she became i n t e n s e l y d i s t r e s s e d . Her spouse became f r i g h t e n e d and gave her emotional support f o r the f i r s t time. P r i o r to t h i s , she had not asked f o r comfort from her spouse, and he had not o f f e r e d i t . Due to the lack of emotional support, and the repeated r e t u r n of the cancer, her emotional d i s t r e s s had b u i l t to a dangerous l e v e l : P: When I decided f o r the l a s t o p e r a t i o n , I couldn't s l e e p at n i g h t ; I c r i e d every day; my husband couldn't stand i t . One n i g h t , 2 days before the l a s t o p e r a t i o n , I couldn't s l e e p , and I came out and sat down on the s t a i r s and I c r i e d . I wanted to cry very loud, but I couldn't f i n d anyplace to cry l o u d l y . Then I s t a r t e d to walk, I walked a long time, and I don't know where I walked. I was c r y i n g and very mixed up in the middle of the n i g h t . When I came back my husband was very scared; he thought I was going to t r y s u i c i d e . I f e l t l i k e s u i c i d e t h a t n i g h t , but I couldn't do i t because of my c h i l d r e n . I stepped i n t o the house he j u s t hugged me. He had never seen how upset I was befo r e . A c t u a l l y , I wanted help but I couldn't ask, so t h a t ' s why I walked by myself and c r i e d . And a f t e r t h a t n i g h t t h a t my husband was scared, he's been n i c e r to me. It i s known t h a t i n d i v i d u a l s with cancer who have d i f f i c u l t y e x p r e ssing v u l n e r a b l e f e e l i n g s to o t h e r s , or are not in a s i t u a t i o n where they can r e c e i v e emotional support from o t h e r s , are at r i s k f o r developing a major depress ion: High r i s k c h a r a c t e r i s t i c s of cancer p a t i e n t s who commit s u i c i d e , f o r example, i n c l u d e high emotional d i s t r e s s and l i m i t e d personal support networks. Negative b e l i e f s make i t d i f f i c u l t f o r p a t i e n t s to seek help, express f e a r s , and escape emotional pain. When depression i s ignored, p a t i e n t s may view s u i c i d e as the only escape from pain (Saunders and Valente, 1988, p. 578). One woman d e s c r i b e d r e c e i v i n g emotional support from f r i e n d s . She r e c e i v e d support by being p h y s i c a l l y h e l d , having someone look a f t e r errands and problems, and being with those who demonstrated a p o s i t i v e a t t i t u d e and hope about her prognosis: P: I had a former b o y f r i e n d who was wonderful; he took charge of e v e r y t h i n g and was th e r e to help me and support me. He was always t h e r e , and i t was easy to t a l k with him. He was t o t a l l y p o s i t i v e ; the face t h a t he always showed me was str o n g , p o s i t i v e ; "You're going to be f i n e . " I d i d n ' t f e e l alone, I f e l t l i k e I had a l o t of people h e l p i n g me. A f r i e n d gave me the Simonton's book, and she took me to her church; i t was based on the power of p o s i t i v e t h i n k i n g . She was r e a l l y good. The women a l s o needed support which allowed them to f r e e l y express t h e i r f e e l i n g s of f e a r , anger, and g r i e f to o t h e r s . Yet, they found t h a t most people became uncomfortable when they attempted to express intense emot ions: P: Nobody r e a l l y l i k e d t a l k i n g about i t . My experience was th a t people l i k e d i t th a t I was strong and courageous and d e a l i n g with i t . They d i d n ' t want me to be any other way because the second I showed t h a t I was f r a g i l e , and th a t something was c r a c k i n g i n s i d e , they d i d n ' t want to see i t because they d i d n ' t want to deal with i t . When I f e e l t h e i r f e e l i n g o f , "Ok, i t ' s enough," then I become d e f e n s i v e about i t and withdraw myse1f. Expressions of g r i e f p a r t i c u l a r l y seemed to make others f e e l uncomfortable: P: People don't r e a l l y get o f f on watching you g r i e v e . Or they're not comfortable being around you when you're g r i e v i n g ; they have no understanding of i t at a l l . My f a m i l y doesn't cry very much. Although the women o f t e n suppressed t h e i r f e e l i n g s , they f e l t intense f e a r , g r i e f , and anxiety from the moment they were t o l d t h a t the d i a g n o s i s was cancer and t h a t r a d i c a l surgery was necessary. They were suddenly confronted with p o s s i b l e death, the sure l o s s of f e r t i l i t y , as well as the upcoming surgery's t h r e a t to s e x u a l i t y , body-image, and p h y s i c a l independence. C o n f r o n t i n g the r e a l i t y of these major lo s s e s caused emotional v u l n e r a b i l i t y and s e n s i t i v i t y : P: My f r i e n d s s a i d I was q u i t e emotional while I was in the h o s p i t a l . They s a i d t h i n g s a f f e c t e d me a l o t more deeply than they had before. #When I'd get upset; I'd get r e a l l y upset. I'm much more calm now. These f e e l i n g s of emotional v u l n e r a b i l i t y and s e n s i t i v i t y a l s o prevented the women from asking f o r emotional support. From the women's d e s c r i p t i o n s , i t was obvious t h a t most of t h e i r intense f e e l i n g s were suppressed due to the lack of adequate emotional support. The women a l s o d e s c r i b e d needing to c l e a r l y understand the upcoming r a d i c a l surgery i n order to lessen t h e i r a n x iety and be prepared f o r problems which occurred during recovery. 4. Understanding The Surgery The 2 women who had midwifery and nur s i n g education had g r e a t e r knowledge about the surgery's e f f e c t s ; however, a l l 5 women d e s c r i b e d s i g n i f i c a n t gaps i n understanding the surgery. They needed c l e a r e r and f u l l e r e x p l a n a t i o n s about the surgery's e f f e c t s on p h y s i c a l and emotional h e a l t h . It i s known t h a t i n d i v i d u a l s diagnosed with a s e r i o u s d i s e a s e need to have inf o r m a t i o n repeated and encouragement to express themselves i n order to f u l l y understand the di s e a s e and i t s treatment: P a t i e n t s with diagnoses which implied t h e i r c o n d i t i o n could be l i f e - t h r e a t e n i n g , maiming, s t i g m a t i z i n g , or c h r o n i c a l l y inconvenient; and where the exchange of ideas between p a t i e n t s and doctors was i n h i b i t e d , had s i g n i f i c a n t l y more instances of the phenomenon of m i s i n t e r p r e t a t i o n , t h a t i s , where the p a t i e n t ' s i n t e r p r e t a t i o n of what she/he was t o l d d i f f e r e d from the doctor's on one or more key p o i n t s . Furthermore, more than one i n four p a t i e n t s could not make c o r r e c t biomedical sense of the "key p o i n t s " of the p h y s i c i a n ' s e x p l a n a t i o n s ( T u c k e t t , Boulton, and Olson; 1985, p. 36). The women s p e c i f i c a l l y d e s c r i b e d being unprepared f o r how the r a d i c a l surgery would change t h e i r body s t r u c t u r e and f u n c t i o n , cause intense emotional r e a c t i o n s , and cause prolonged p h y s i c a l weakness: P: They s a i d I'd be in the h o s p i t a l from 10 days to 2 weeks, and then, a f t e r t h a t , I t h i n k they s a i d 6 to 8 weeks a f t e r my surgery I would be able to go back to work. But when I was in the h o s p i t a l I got up and washed my h a i r , I was exhausted and went back to bed. I mentioned t h a t to my surgeon and he s a i d t h a t i t wasn't unusual, and i t would take about 6 months f o r me to r e a l l y get my s t r e n g t h back. So I f i g u r e d out then how long i t would take. One woman expressed anger about her lack of understanding but r a t i o n a l i z e d t h a t not knowing about the prolonged recovery p e r i o d had kept her hopes up: P: In some ways I was very angry t h a t they d i d n ' t e x p l a i n i t more thoroughly and, in other ways, I'm glad because i f I'd known at the beginning how long i t would take, i t might have seemed longer. As i t was I kept t h i n k i n g ; " I t can't be too much longer, p r e t t y soon t h i s w i l l be healed; s u r e l y i t w i l l o nly be another week and I ' l l be healed", and yet i t was weeks and weeks and weeks. But every week I'd keep t h i n k i n g ; " I t w i l l only be another week"; in t h a t sense i t was good. T h i s woman a l s o commented t h a t , although she d i d not ask many questions about the surgery, t h i s d i d not mean that she understood the surgery's e f f e c t s . For example, she had s i g n i f i c a n t misconceptions about the length of her recovery p e r i o d : P: I was i n the h o s p i t a l f o r 3 weeks. I honestly b e l i e v e d I would go i n , have t h i s o p e r a t i o n and w i t h i n 2 or 3 weeks I would be f i n e ; as i f nothing had happened. I wish they had given me more thorough i n f o r m a t i o n , not j u s t what the procedure would be, but how i t would a f f e c t me now, and l a t e r , and what I'd have to deal with. I resented i t l a t e r , not having more i n f o r m a t i o n , and then I kept t h i n k i n g , "Well, I d i d n ' t ask f o r i t , so they d i d n ' t give i t to me." And then I thought, "Well, don't they know t h a t I knew nothing?" Maybe t h a t ' s t h e i r p e r c e p t i o n ; they j u s t t h i n k I'm not asking q u e s t i o n s , but don't they r e a l i z e t h a t I don't know how to s t a r t ? No one even broached the s u b j e c t and I was not informed enough at the time to even th i n k of asking the proper q u e s t i o n s , even though I d i d a l o t of r e a d i n g . The kind of cancer I had and the r e c o n s t r u c t i o n ; t h e r e ' s not a l o t a layperson can go out and read about or f i n d out about. My experience with doctors was t h a t they d i d n ' t t e l l me anything unless I d e l i b e r a t e l y asked them; other than t h a t , they saw me; they examined me, and th a t was i t . I j u s t had nothing to base my questions on. And I r e a l i z e t h a t at the time I was probably i n shock and probably wouldn't have taken the i n f o r m a t i o n i n . Th i s woman a l s o s p e c i f i c a l l y d e s c r i b e d not understanding the anatomical changes t h a t the surgery caused even though the s u r g i c a l procedure had been exp1ai ned: P: They t o l d me what they were going to remove, and tha t I would have r e c o n s t r u c t i o n , but I had no understanding or conception of what t h a t r e a l l y meant, a b s o l u t e l y none. I d i d n ' t have the knowledge to ask the r i g h t q u e s t i o n s . The women commonly d i d not understand t h a t they would have prolonged problems with bladder f u n c t i o n i n g a f t e r surgery, even when they knew that the bladder would be traumatized by the surgery. Even the woman with midwifery education had not r e a l i z e d , f o r example, th a t she would have a c a t h e t e r a f t e r surgery: P: The doctors d i d n ' t t e l l me t h a t I have to have a ca t h e t e r in f o r 10 days, and when they take i t out I won't be able to v o i d . They j u s t t o l d me i t was very c l o s e to the bladder and everytime they do t h a t , they damage the nerves and i t takes time u n t i l i t grows back and a l l goes to normal. The women had a b e t t e r understanding and acceptance of procedures when they could see, as well as hear, the inf o r m a t i o n given to them: P: There was always a spot where the cancer would come back. The r a d i a t i o n doctor would always show me on the computer TV. The r a d i a t i o n made i t s h r i n k , but there was s t i l l a spot t h e r e . I b e l i e v e d him, and t h a t ' s why I had to have a second o p e r a t i o n . The b e n e f i t s of using v i s u a l t o o l s in t e a c h i n g i s recogn i z e d by l e a r n i n g t h e o r i s t s (Bigge, 1982). One woman s t a t e d that i f she had seen and touched the va g i n a l mold before the surgery she would have had l e s s a n x i e t y about the v a g i n a l r e c o n s t r u c t i o n : P: It scared me when I f i r s t saw the v a g i n a l mold. If they'd showed me what i t looked l i k e I could have touched i t . If someone had t o l d me how to put i t i n ; how to take i t out; i t would have made i t e a s i e r . It scared me. I d i d n ' t know what i t was l i k e i n s i d e ; what i t looks l i k e ; how i t ' s going to f e e l to take i t out. When they gave me a m i r r o r to look down th e r e , I d i d n ' t want to look because I might see something bad. But I couldn't see anything, j u s t the s t r i n g on the end of the mold; e v e r y t h i n g looked normal. The women a l s o needed h e a l t h p r o f e s s i o n a l s to gi v e i n f o r m a t i o n f r e q u e n t l y about t h e i r prognosis a f t e r surgery. One woman experienced the r e t u r n of cancer t h r e e times; a f t e r l a s e r treatment, a f t e r a hysterectomy, and a f t e r r a d i a t i o n . F o l l o w i n g her f i n a l r a d i c a l surgery, she fea r e d that p h y s i c i a n s might be wi t h h o l d i n g i n f o r m a t i o n from her. She was s u s p i c i o u s about the p h y s i c i a n s ' motives and d i d not understand t h e i r q u e s t i o n s : P: Even though they t o l d me e v e r y t h i n g , I couldn't b e l i e v e them, I always thought they are keeping some s e c r e t s . They always ask me, "Did you come alone?", when I come to the o f f i c e , so maybe there i s a chance that they weren't t e l l i n g me something. It may be th a t a language b a r r i e r prevented t h i s woman from f u l l y understanding the p h y s i c i a n ' s e x p l a n a t i o n s when her cancer was f i r s t suspected. However, she a l s o delayed medical follow-up at t h i s time due to her anxiety over f a m i l y problems and her misunderstanding of p h y s i c i a n s ' e x p l a n a t i o n s : P: I t o l d the doctor, "You should t e l l me e v e r y t h i n g . " He d i d n ' t t e l l me i t was s e r i o u s , "You have to have an o p e r a t i o n ; " then maybe I would have had i t r i g h t away when the cancer was s t i l l s m a l l . He s a i d , "Go to your f a m i l y doctor and decide about the o p e r a t i o n , " and my f a m i l y doctor s a i d to think about i t . I waited 7 or 8 months. I was t r y i n g to get a job and my husband and I were having problems. Then I got a job and I thought, " I f I go have an o p e r a t i o n , maybe the boss won't l i k e i t , so maybe I should work at l e a s t h a l f a year f i r s t . " So I d i d t h a t , and then when I went back to my f a m i l y doctor. He s a i d I needed the o p e r a t i o n r i g h t away and s a i d "Why d i d n ' t I come sooner?" The c e l l s were s t i l l t h ere and I went to the s p e c i a l i s t and they t o l d me now t h a t i t i s very bad, malignant, there i s no time to wait. T h i s woman needed follow-up r e f e r r a l to a community h e a l t h s e r v i c e due to the language b a r r i e r and her fami 1y prob1 ems. Studies show t h a t r e c e i v i n g adequate in f o r m a t i o n about cancer l a r g e l y depends on the i n d i v i d u a l ' s a b i l i t y to ask qu e s t i o n s : Why i s i t t h a t we s t i l l don't understand how to reach a large p r o p o r t i o n of our p a t i e n t s who don't ask questions and who aren't i n f o r m a t i o n seekers? We need rese a r c h to know whether t h i s i s t h e i r coping s t y l e or whether t h e i r i n f o r m a t i o n needs are even gre a t e r than others (Morra, 1988, p.425). One woman s t a t e d t h a t she d i d not want to know anything about the surgery because she f e l t t h a t i t might have increased her emotional d i s t r e s s : P: I don't t h i n k I wanted to know about anything before the surgery; what you don't know don't hurt. If I'd have known th a t they would p u l l my vagina a l l up; i t may have hurt me more i f I'd known. I knew about the bladder and the bowel, but not the vagina. I d i d n ' t read up on i t . Maybe I would have i f I'd found some books on i t . But I'm l i k e a b i r d who puts i t s head in the sand and doesn't want to know about i t . If i t ' s bad, I j u s t want t o shove i t a s i d e ; put i t on the back burner, in other words, I don't want to thin k about i t . Women who use t h i s method of coping with anxiety may need i n f o r m a t i o n in small amounts with adequate emotional support. G i v i n g i n f o r m a t i o n about the surgery and f i n d i n g out misconceptions i s c l e a r l y necessary. One woman had misconceptions about the e f f e c t s of menopause which caused her to f e e l unnecessary a n x i e t y : P: I c r i e d at the very beginning, and i t was more coming to g r i p s with not having a c h i l d , and going through menopause. I d i d n ' t want t o go through menopause; i t f e l t l i k e I was going t o go through menopause and th a t was going to be r e a l l y awful. I was a f r a i d t h a t I would look o l d ; I a c t u a l l y s a i d to my s i s t e r - i n - l a w ; "People are going to look at me, and they're going to know; I'm going to get o l d , I'm going to look o l d . " I thought I'd look a l o t o l d e r r i g h t away. She i s a nurse and she s a i d t h a t wouldn't happen, so I b e l i e v e d her. She s a i d , "Sometimes people get f a t " , and I s a i d , "Thanks a l o t . " She s a i d , "Sometimes you get a l i t t l e t h i c k e r in the waist, sometimes i t ' s harder t o keep the pounds o f f . " Maybe your metabolism slows down. T h i s woman d e s c r i b e d f i n d i n g out infor m a t i o n about her surgery by overhe a r i n g the p h y s i c i a n d i s c u s s her case with students: P: Of course you get t r o t t e d by a l l the new guys, the i n t e r n s , who come through the c l i n i c so a l o t of the i n f o r m a t i o n t h a t I gathered was from l i s t e n i n g to him d e s c r i b e me to other people. I di d n ' t know what they were going t o do. I knew t h a t they were going to do the r a d i c a l hysterectomy, which inc l u d e d the o v a r i e s . Another woman d e s c r i b e d how she o f t e n f e l t i n t i m i d a t e d by her p h y s i c i a n s , but e s p e c i a l l y during t h i s e m o t i o n a l l y v u l n e r a b l e time. F e e l i n g i n t i m i d a t e d was a s i g n i f i c a n t b a r r i e r to her a b i l i t y to ask q u e s t i o n s : P: I have a problem asking them que s t i o n s ; I s t i l l do; I am i n t i m i d a t e d . I get along with them r e a l l y w e l l ; I f e e l comfortable with them, and I have a paranoia about asking them more probing questions or questions about a l t e r n a t i v e treatment. I f e e l as though i f I th r e a t e n them then the r e p e r c u s s i o n s may come back t o me. I see a doctor in a very t r a d i t i o n a l r o l e ; I have a hard time c h a l l e n g i n g t h a t , even though I know I should. And e s p e c i a l l y • now, because I'm f e e l i n g so f r a g i l e and v u l n e r a b l e and almost the only s e c u r i t y I have i n a sense when I'm with the doctor i s I f e e l comfortable with him, and I j u s t don't want to d i s t u r b that f e e l i n g . I t ' s j u s t when I'm i n the o f f i c e with the doctor, I f e e l l i k e I'm the h e l p l e s s one, l i k e t h i s i s h i s place and h i s o f f i c e and h i s room and he's the one in charge, and I f e e l l i k e I'm j u s t t h e r e . . . bare1y. In some sense i t ' s almost as i f I become a l i t t l e g i r l , and I have no sense of a u t h o r i t y or confidence when I'm i n th e r e . I should be the one in charge; I mean i t ' s my body we're d e a l i n g with. I always f e e l as i f I am f i v e years o l d , and they're p a t t i n g me on the head and g i v i n g me a l o l l i p o p f o r being a good g i r l . That's e x a c t l y how I f e e l , and I hate i t ; i t d r i v e s me crazy . And so perhaps d r e s s i n g up and pretending to be s o p h i s t i c a t e d helps balance those f e e l i n g s . Many women commonly f e e l r e l u c t a n t to questi o n t h e i r p h y s i c i a n s ' judgements. Roberts (1985) w r i t e s t h a t women f e e l i n t i m i d a t e d i n the presence of p h y s i c i a n s due to the s o c i a l i z e d assumption t h a t p h y s i c i a n s have accurate and complete knowledge about the body. In a d d i t i o n , the s o c i a l i z e d behavior of being submissive to men a l s o c o n t r i b u t e s to women's i n a b i l i t y to q u e s t i o n male p h y s i c i a n s : One of the t h i n g s which makes women p a t i e n t s so powerless when they go to the doctor's i s the f a c t t h a t the doctor i s assumed to hold a l l the knowledge about the p a t i e n t ' s body. In a d d i t i o n , f o r the powerless, s e i z i n g power i s almost as d i f f i c u l t as persuading the powerful to cede i t (Roberts, 1985, p. 116). Burger (1981), a student nurse who had r a d i c a l surgery f o r v a g i n a l cancer, d e s c r i b e d f e e l i n g l o y a l t o , and dependent on, the p h y s i c i a n who had helped her. She h e s i t a t e d t o seek other medical o p i n i o n s because she d i d n ' t want to o f f e n d her p h y s i c i a n , and because she f e l t t h a t only t h i s p h y s i c i a n understood her experience: I had been a f r a i d to give up my o r i g i n a l g y n e c o l o g i s t d e s p i t e my mixed f e e l i n g s about him p o s t o p e r a t i v e l y . I thought no one e l s e would know about t h i s r a r e cancer or what I p e r s o n a l l y had l e f t a f t e r surgery; t h i s was an erroneous myth (Burger, 1981, p. 51). The women needed to f e e l an equal i n t e r p e r s o n a l r e l a t i o n s h i p with p h y s i c i a n s and be a s s e r t i v e in asking questions about the surgery and i t s e f f e c t s . S i g n i f i c a n t i n f o r m a t i o n about the surgery's e f f e c t s was o f t e n not d i s c u s s e d with these women. One woman had to ask about how the r a d i c a l surgery would change her vag i na: P: I d i d n ' t know they were going to take out my vagina because I had asked him about i t and he s a i d , "No, they would take 2 inches a l l around," and I s a i d , " I f you took 2 inches around, t h a t ' s most of my vagina gone because i t ' s not very large anymore," ( a f t e r r a d i a t i o n ) , and they kept s a y i n g , "No, no, i t w i l l be f i n e , y o u ' l l have enough vagina, and i t s t r e t c h e s ; i t ' s no problem." But now, i t b a r e l y goes i n to my f i n g e r t i p s . The p h y s i c i a n ' s manner and a b i l i t y to convey i n f o r m a t i o n a l s o has a s i g n i f i c a n t e f f e c t on a woman's a b i l i t y to ask questions about the surgery. Burger (1981) d e s c r i b e d the h e l p f u l approach of a g y n e c o l o g i s t who expl a i n e d v a g i n a l r e c o n s t r u c t i o n and bladder r e p a i r to her. She summarized the q u a l i t i e s of t h i s approach: - take time t o e x p l a i n the r i s k s and b e n e f i t s . - draw p i c t u r e s . - l e t p a t i e n t choose what she wants to have done. - i n s t i l l r e a l i s t i c hope. - f e e l okay about p a t i e n t seeking f u r t h e r consu1 t a t ion. - i n c l u d e p a t i e n t in plans f o r treatment (Burger, 1981, p. 51). Four women asked to read t h e i r pathology r e p o r t s . They needed to read these r e p o r t s to help them b e l i e v e t h a t the cancer had been removed and lessen t h e i r f e a r of the unknown. One woman s t a t e d that reading the surgery's procedure r e p o r t as well as the pathology r e p o r t helped her to understand the surgery's e f f e c t s : P: I asked my GP f o r the pathology r e p o r t . He gave me ev e r y t h i n g . It was a l i t t l e shocking hearing y o u r s e l f in t e x t , you know, Mrs was draped in the lithotomy p o s i t i o n , but on the whole I was so glad I read them even though I couldn't understand a l l of i t . I f e l t so much b e t t e r a f t e r reading them, l i k e I knew what was going on, and I r e a l i z e d how much the doctor wasn't t e l l i n g me. I don't t h i n k he was d e l i b e r a t e l y w i t h o l d i n g anything, but I c e r t a i n l y wasn't g e t t i n g the whole p i c t u r e j u s t from him t e l l i n g me what was going on. Reading these r e p o r t s I had b e t t e r understanding; f i r s t of a l l of what they had done to me, and second of a l l , I t h i n k t h a t gave me a b e t t e r b a s i s to understand what the e f f e c t s would be on me. I guess my f e e l i n g i s th a t you can't have too much in f o r m a t i o n . And even the negative p a r t s , l i k e where they found the malignancy, because I understood i t . I mean you can't r e a l l y f e a r as b l i n d l y what you see and understand whereas t h a t f e a r of the unknown... what part of the body i s i t a f f e c t i n g ? If you don't know, w e l l , your imagination i s boundless. The pathology r e p o r t gave boundaries, and you can deal with boundaries. R e c e i v i n g i n f o r m a t i o n from others who had experienced s i m i l a r surgery helped the women understand the surgery and provided them with needed emotional support: P: A woman who had a urostomy came and v i s i t e d me in the h o s p i t a l . She was an o l d pro at i t . She s a i d , "Just t h i n k , everyone has to get up to go to the bathroom at night and you wouldn't have t o ; you get hooked up f o r the n i g h t . " That helped....I s t i l l keep in touch with her. In a d d i t i o n , although one woman f e l t d i s t r e s s e d when she saw another woman's leg scar (from the s k i n g r a f t donor s i t e ) a f t e r v a g i n a l r e c o n s t r u c t i v e surgery, she a l s o a p p r e c i a t e d having the o p p o r t u n i t y to ask t h i s woman s p e c i f i c , personal questions about the surgery's e f f e c t s : P: I met another woman with s i m i l a r surgery which scared me even more because the doctors s a i d what they're going to do, but they d i d n ' t t e l l me how i t ' s going to f e e l or what i t ' s l i k e . I was glad I t a l k e d with her. I knew what to expect because I was in the h o s p i t a l and she t o l d me what she went through and how she d e a l t with i t and that helped q u i t e a b i t . I was s u r p r i s e d t h a t she had such a big p i e c e of s k i n m i s s i n g . I thought the vagina was very small and I thought t h e y ' l l j u s t take a piece of s k i n ; they don't t e l l you how b i g of a pie c e they take, and she had these two pi e c e s r i p p e d o f f . I thought; "Oh, no, on my l e g , everyone can see i t , I can never wear s h o r t s . " She s a i d , "That's the l e a s t , t a k i n g i t from the l e g , there's more to i t ; more p a i n . " I thought t a l k i n g with t h a t lady t h a t had i t done was a great t h i n g because I wouldn't have known anything about i t ; the f e e l i n g s with the mold, which was the most important and p a i n f u l t h i n g ; and the whole process of the surgery, what they d i d , and how i t f e l t what was happening a f t e r ; i f you were able to have sexual i n t e r c o u r s e , and how her husband f e l t about i t ; because I d i d n ' t know how mine was going to f e e l about i t . Repeatedly, the women d e s c r i b e d needing f u l l e r e x p l a n a t i o n s of the surgery's e f f e c t s and emotional support during these e x p l a n a t i o n s : P: A l l I wish i s t h a t there had been someone I could have t a l k e d to about i t , s i t down and d i s c u s s i t ; r e a l l y understand what i t a l l meant and how i t would a f f e c t me l a t e r on, because I had no idea; I was ignorant when they d i d the surgery. I wished there had been someone I could have gone to t a l k to....where I could s i t down and say, "Well, t h i s i s what the doctor s a i d , what does i t mean?...and what are the r e s u l t s and r e p e r c u s s i o n s ? " I had no one I could s i t down and t a l k to l i k e t h a t , and t h a t ' s what I r e a l l y needed. Summary In t h i s f i r s t major category, F i n d i n g Out About Having G y n e c o l o g i c a l Cancer, the women d e s c r i b e d having i n t u i t i v e f e a r s about t h e i r h e a l t h due to s p e c i f i c symptoms, even when p h y s i c i a n s d i d not i n i t i a l l y c o n s i d e r these symptoms to be s e r i o u s . One woman i n t u i t i v e l y knew th a t she had cancer before being t o l d the d i a g n o s i s . Four women experienced a s i g n i f i c a n t delay between seeking medical help f o r p h y s i c a l symptoms and being diagnosed with cancer. One woman d i d not r e t u r n f o r medical follow-up due to anxiety about f a m i l y problems and misunderstanding her p h y s i c i a n . The women f e l t intense alarm and a need f o r emotional support at the time of f i n d i n g out about having cancer. They d i d not p e r c e i v e r e c e i v i n g emotional support from t h e i r p h y s i c i a n s at t h i s time. Most women needed to f i n d out more info r m a t i o n about the cancer and needed treatment to begin as soon as p o s s i b l e . During t h i s time, the women o f t e n thought about dying. They a l s o had thoughts and f e e l i n g s t h a t the cancer and surgery were u n r e a l . The women d i d not r e c e i v e adequate emotional support because they b e l i e v e d they should be em o t i o n a l l y s t r o n g , because they were a f r a i d of being r e j e c t e d or p i t i e d , or because t h e i r f a m i l i e s and f r i e n d s d i d not know how to give emotional support. Most women needed to keep t h e i r cancer d i a g n o s i s a s e c r e t . A l l women f e l t i s o l a t e d at times from others due to having cancer and the e f f e c t s of the surgery. They needed p h y s i c a l and emotional comfort from others and needed to f e e l t h a t they were allowed to express v u l n e r a b l e emotions to ot h e r s . More in f o r m a t i o n was needed f o r the women to understand the r a d i c a l surgery and i t s e f f e c t s . They d i d not r e a l i z e the extent of p o s t - s u r g i c a l weakness or that they would experience prolonged problems with bladder f u n c t i o n i n g . They needed to le a r n medical terms and concepts in order to understand anatomical changes. Reading t h e i r pathology r e p o r t s helped reduce f e a r . The women needed to see as well as hear i n f o r m a t i o n and to be encouraged to ask que s t i o n s . The women d e s c r i b e d f e e l i n g i n t i m i d a t e d by p h y s i c i a n s and i n h i b i t e d about asking q u e s t i o n s . They a p p r e c i a t e d v i s i t s and inf o r m a t i o n from other women who had experienced s i m i l a r surgery. They needed to d i s c u s s the whole experience with someone who could g i v e them time, s i g n i f i c a n t personal i n f o r m a t i o n , and emotional support. P h y s i c a l Recovery A f t e r Radical Surgery For G y n e c o l o g i c a l Cancer i s the second major category. T h i s category c o n t a i n s the women's d e s c r i p t i o n s of needing time to r e g a i n s t r e n g t h a f t e r surgery, bladder and bowel problems, and v a g i n a l h e a l i n g and r e c o n s t r u c t i o n . I I . PHYSICAL RECOVERY AFTER RADICAL SURGERY FOR GYNECOLOGICAL CANCER Th i s second major category was developed from the women's d e s c r i p t i o n s of t h e i r prolonged p h y s i c a l problems a f t e r surgery. These problems are d i s c u s s e d under three headings: Needing Time to Regain Strength, Bowel and Bladder, and Vaginal Healing and R e c o n s t r u c t i o n . 1. Needing Time to Regain Strength The women needed at l e a s t 3 months a f t e r surgery to r e g a i n previous l e v e l s of p h y s i c a l s t r e n g t h and stamina. They had not expected the extent of p o s t - s u r g i c a l weakness and pain which they experienced: P: I t h i n k i t was 6 weeks before I could walk around normally. When I l e f t the h o s p i t a l I stayed at someone e l s e ' s house f o r another 2 weeks before I could make the t r i p home. I was so shocked t h a t i t took me so long j u s t going up and down s t a i r s . Since the women were a c t i v e and healthy before the surgery, t h i s sudden and prolonged p h y s i c a l i n a c t i v i t y and dependence on others was f r u s t r a t i n g : P: The housekeeper stayed f o r 6 weeks, during the worst time. I don't know how I could cope i f I was a l l by myself. I l o s t so much weight t h a t I couldn't stand on my f e e t f o r more than 1/2 an hour, and somebody had to cook and feed me. For me i t was a t e r r i b l e f e e l i n g , because I'm the type of person who wants to be on the go a l l day. I was i n such a hurry t o be myself again. Burger (1981), a student nurse who had r a d i c a l surgery f o r va g i n a l cancer, a l s o d e s c r i b e d being extremely weak f o r a prolonged p e r i o d a f t e r surgery and f r u s t r a t e d by p h y s i c a l i n a c t i v i t y and dependence on o t h e r s : The surgery was d e b i l i t a t i n g due to i t s 4 hour length, the lo s s of f i v e p i n t s of blood, and ex t e n s i v e removal of organs. When the 24 hour support provided by the h o s p i t a l was gone, I faced my g r e a t e s t times of d i f f i c u l t y . I wanted to get b e t t e r f a s t . Being h e l p l e s s and dependent on others was hard f o r me, s i n c e I had never been i l l and was used to being very a c t i v e (Burger, 1981, p. The women needed to know t h a t t h e i r energy and independence would e v e n t u a l l y r e t u r n : P: I d i d n ' t know how long i t was going to take to get back to normal. I thought maybe i t was t a k i n g too long. I d i d see someone (who had s i m i l a r surgery) while I was in the h o s p i t a l , and she looked b e a u t i f u l . I would never suspect her having anything l i k e t h a t . I t o l d myself, " I f she looks good a f t e r 3 months then I should be l i k e t h a t too," and i t happened. But you doubt y o u r s e l f ; you don't know i f you're going to stay l i k e t h a t ; i f i t ' s going to get b e t t e r , or i f i t ' s not going to get b e t t e r ; t h a t was the hard p a r t . P: There are some times i n there you get to f e e l i n g you are so run down, you have no s t r e n g t h , and you're so i n ; l i k e i t takes e v e r y t h i n g you've got, everyday, to j u s t get your body through the day; tha t i t helps to see somebody who's been there and to see th a t those same people r e a l l y do look healthy when they come out the other end. Due to c o m p l i c a t i o n s , 2 women never regained previous l e v e l s of p h y s i c a l s t r e n g t h and stamina a f t e r the r a d i c a l surgery. One woman experienced p h y s i c a l d i s a b i l i t y due to severe bowel adhesions which e v e n t u a l l y r e q u i r e d more surgery: P: I had the surgery i n January, but i t took a whole year because I was s t i l l no good at Christmas. I was s i c k with the adhesions; I walked the f l o o r day and n i g h t ; the pain was so bad. I couldn't eat. I was at the c l i n i c so many times; I got plugged up. It was the adhesions. They thought i t was too r i s k y t o operate. Another woman had severe edema due to the removal 91 of lymph nodes and r a d i a t i o n treatments. Needing to v o i d f r e q u e n t l y during the night a l s o caused f a t i g u e : P: I was s i c k e x a c t l y 1 year a f t e r the b i g surgery. A f t e r the l a s t o p e r a t i o n ( r a d i c a l surgery) my recovery was very, very slow. A f t e r the f i r s t o p e r a t i o n (hysterectomy) i t was only 3 months and I could run; I could r i d e my bike; but t h i s time i t was very slow. The doctors s a i d the r a d i a t i o n makes a l l the organs go slow. The s w e l l i n g came a f t e r the r a d i a t i o n , and I s t i l l have i t . Sometimes, i f I stand a l l day, then my legs are l i k e a b a l l o o n and hard to touch. The s w e l l i n g i s in the upper r i g h t l e g , in the lower abdomen, and in the g r o i n area. It gets l i k e a l i t t l e b a l l o o n in the g r o i n . And the ankles, too, I can see the l i n e s when I wear socks. I get leg cramps in the n i g h t . The doctor s a i d i t ' s from not having the lymph nodes and he showed me how to do e x e r c i s e s . It w i l l be l i k e t h a t f o r e v e r I t h i n k ; can't do anything about i t , j u s t l o t s and l o t s of r e s t . I look healthy; nobody knows I am s i c k , but I have no energy. I've no s t r e n g t h now. I get t i r e d e a s i l y and can't s l e e p . In the night I go to the washroom, maybe th r e e times; t h a t ' s why I'm so t i r e d . My doctor says maybe I have a scar s t i l l 92 i n s i d e from the surgery, and I have only one h a l f a bladder, so t h a t i s a problem. Sometimes I have d i f f e r e n t strange pains; a p u l l i n g or p i n c h i n g when I l i e down. Sometimes I worry t h a t i t ' s cancer again. S i g n i f i c a n t and prolonged problems with bowel and bladder f u n c t i o n i n g were a l s o common a f t e r t h i s r a d i c a l surgery. These problems are d i s c u s s e d under the next heading. 2. Bowel and Bladder Problems Three woman had r a d i a t i o n treatments i n a d d i t i o n to the r a d i c a l surgery which caused problems due to bowel adhesions and i r r i t a b l e bowels. They experienced cramping, d i a r r h e a , c o n s t i p a t i o n , e x c e s s i v e f l a t u s , and bowel blockage a f t e r surgery: P: I had such bowel t r o u b l e ; I d i d n ' t know i f I could get to t h a t corner s t o r e , b r i n g t h a t milk back, without, excuse me, s h i t t i n g my drawers. You get a l l keyed up and the next day I'd be c o n s t i p a t e d . It took me a long time before I could go i n t o a b i g department s t o r e . That's only been in the l a s t year because i n there you're so f a r away from a secure t o i l e t ; you've got to have an eye on i t a l l the time. I couldn't keep c o n t r o l of my gas e i t h e r because they cut the nerve, the e l a s t i c i t y ; the rectum should be c l o s e d t i g h t . I t ' s j u s t beginning to c l o s e now a f t e r 4 years. The drawers I had to wash; I couldn't make i t to the bathroom; i t was there and i t was already going; no time to thin k or do anything about i t . I s t i l l wear a pad. P: Sometimes a f t e r the r a d i a t i o n I had d i a r r h e a and I coul d n ' t f e e l i t and had to run to the t o i l e t . There was a l l t h i s i r r i t a t i o n on the s k i n . Then I was c o n s t i p a t e d a l o t too. No f e e l i n g and I thin k the r a d i a t i o n caused t h a t . I got over i t by e a t i n g l o t s of f r u i t and vegetables and whole wheat bread. C o n s t i p a t i o n was a l s o a common problem due to needing a n a l g e s i c s a f t e r the surgery. It caused the g r e a t e s t d i s t r e s s f o r the women who had v a g i n a l r e c o n s t r u c t i o n s i n c e hard s t o o l would push on the h e a l i n g v a g i n a l area and cause pa i n : P: For one t h i n g , you couldn't put any pressure on y o u r s e l f ; you cou l d n ' t s t r a i n to move the bowels at a l l , at l e a s t I co u l d n ' t . I l i t e r a l l y almost had to wait u n t i l i t was ready to drop out of the body before I could do anything about i t . F i r s t of a l l I f e l t l i k e the mold would pop out, and i t j u s t hurt too much to push; I f e l t l i k e I was going to r i p e v e r y t h i n g down here apart. And I was c o n s t i p a t e d , which made i t harder, although I d i d ev e r y t h i n g I co u l d . I di d n ' t take p i l l s but e a t i n g w i s e l y , but i t took awhile f o r t h a t to balance i t s e l f . The women had a common fe a r t h a t pressure during a bowel movement would damage the r e c o n s t r u c t e d area: P: I t h i n k i t was a f t e r 2 weeks I was able to go (move bowels). I had j u s t a l i t t l e b i t ; then, i t d i d n ' t hurt. The only scare t h a t I had when I went i s t h a t my mold i s going to come out. I had to hold i t every time with my f i n g e r j u s t t o push i t back so i t doesn't come out. I wondered i f I would be c o n s t i p a t e d . They s a i d ( i n the h o s p i t a l ) t h a t s i n c e I went a l i t t l e b i t i t would probably be ok, but I was s t i l l on the T y l e n o l #3, which i s very c o n s t i p a t i n g , so i t took me a long time, and i t was p a i n f u l . I was scared with a l l the s c a r s that something would come apart. During the r a d i c a l surgery, the bladder and surrounding nerves are a l s o traumatized. Most women could not v o i d on t h e i r own f o r s e v e r a l weeks a f t e r surgery and had to le a r n s e 1 f - c a t h e t e r i z a t i o n : P: I was c a t h e t e r i z i n g myself every time I voided. For the f i r s t few months I couldn't even vo i d a l i t t l e b i t on my own. It seemed to be e a s i e r to vo i d when the mold wasn't i n s i d e and so I would d e l i b e r a t e l y use t h a t time to get as much out as I could and use the c a t h e t e r afterwards. Of course I would always t r y to v o i d f i r s t before using the c a t h e t e r . I had the s e n s a t i o n of having to go. I had to use a c a t h e t e r f o r 4 months and they d i d n ' t know whether I would always have to use i t or whether i t would f i x i t s e l f . It f e e l s normal now, but I don't t h i n k I v o i d as completely as I used t o . It doesn't f e e l as str o n g , the gush i s j u s t not as strong as i t used to be. I've had two or three bladder i n f e c t i o n s during t h a t time. For some women, the sen s a t i o n s of bladder f u l l n e s s and v o i d i n g never returned and bladder f u n c t i o n i n g s t i l l causes problems: P: I used an in and out c a t h e t e r f o r the f i r s t week or so at home. It d i d n ' t hurt p u t t i n g i t i n . I used a m i r r o r at f i r s t , but i t gets p r e t t y easy a f t e r awhile. Even in the h o s p i t a l I could go a l i t t l e b i t . What I would do was go as much as I could on my own. L i k e r e a l l y concentrate and f o r c e myself, and then when I f e l t t h a t was i t , I wouldn't be able to go anymore, then I'd use the c a t h e t e r f o r the r e s t of i t . They t o l d me to do t h a t . The p u b l i c h e a l t h nurse was r e a l l y good. She came three times a week. I t ' s hard f o r me to t e l l when I'm g e t t i n g a bladder i n f e c t i o n because I don't have any s e n s a t i o n . L i k e they ask me, "Do you have any burning s e n s a t i o n s ? " . Well, I haven't any s e n s a t i o n s , p e r i o d , so how would I know? Except t h a t there are some times when I don't seem to have the same c o n t r o l , and then I've thought i t was an i n f e c t i o n . I s t i l l have a c c i d e n t s . My bladder s t i l l i s n ' t back to normal; i t ' s u n p r e d i c t a b l e . I'm v o i d i n g ok, but I have no s e n s a t i o n . One woman went home with a supra-pubic c a t h e t e r which drained her bladder through a tube i n s e r t e d in the lower abdomen. A stopcock on t h i s tube allowed the bladder to f i l l which was important f o r r e g a i n i n g bladder muscle tone s i n c e part of her bladder had been removed. T h i s woman a l s o experienced bladder d y s f u n c t i o n f o r s e v e r a l months a f t e r surgery: P: I went home with a tube to d r a i n the bladder from the abdomen. I had i t f o r 2 months and i t was t e r r i b l e . I emptied i t and the home care nurse came everyday and checked my bandages. She p u l l e d the d r a i n out, l i t t l e by l i t t l e . It f i n a l l y p u l l e d out; I s t a r t e d peeing, but I had no f e e l i n g . I used a pad a long time. That was t e r r i b l e being wet a l l the time and I could smell i t . A f t e r some weeks I would f e e l the need to go, but I u s u a l l y c ouldn't make i t . Bladder f u n c t i o n i n g improved s l o w l y , but even years a f t e r the r a d i c a l surgery, the women d e s c r i b e d having problems with frequency, urgency, and inc o n t i n e n c e : P: I s t i l l have a c c i d e n t s , e i t h e r from f o r g e t t i n g to go because I have no s e n s a t i o n , or t r y i n g to s t r e t c h i t too long between going. When you have the s e n s a t i o n to go normally, i t ' s r i g h t at the 98 bottom you f e e l the pressure; w e l l , I don't have t h a t , but I t h i n k i t must press on other organs and wake me up. Every three or four hours I t r y to go. When I'm s i t t i n g i t ' s f i n e . Then I ' l l stand up and walk, and I t h i n k i t ' s the movement of the bladder that does i t . Sometimes a f a i r b i t w i l l come out; u s u a l l y j u s t a l i t t l e b i t . If I've been out l a t e at n i g h t , or i f i have a c o l d , and i f I drink a l c o h o l and c o f f e e , t h a t seems to have a b i g e f f e c t on how much I go and how f r e q u e n t l y . Sometimes I ' l l wake up in the middle of the night and know I have to go, and sometimes I ' l l have some leakage in the n i g h t . If I have leakage then I know my body i s g e t t i n g run down. One woman had problems with bladder f u n c t i o n i n g only a f t e r having a d d i t i o n a l surgery to r e p a i r a f i s t u l a or opening in her u r e t h r a : P: I was lucky, I couldn't (void) in the h o s p i t a l , but f i n a l l y i t came back and e v e r y t h i n g was f i n e . Then, 4 months l a t e r , I developed a f i s t u l a between the u r e t h r a and vagina and I had to go back f o r surgery. The bladder i s s t i l l not working p r o p e r l y . I t ' s not l e a k i n g , but I have to go to the washroom very f r e q u e n t l y , and when my bladder i s f u l l I can't hold my u r i n e ; i t j u s t d r i b b l e s out. I can t e l l when I'm 99 g e t t i n g f u l l . I'm c a r e f u l but sometimes there i s no washroom around and I have to look f o r i t , and I extend that time; then i t s t a r t s to happen. I t r y as much as I can, but I can't hold i t ; i t ' s a h o r r i b l e f e e l i n g . They t o l d me that i t could be c o r r e c t e d , but they want to wait. T h i s woman remembered r e c e i v i n g i n s t r u c t i o n s about e x e r c i s e s which improved bladder c o n t r o l . She d i d not know, however, how f r e q u e n t l y she should do these e x e r c i s e s and had stopped doing them at the time of the in t e r v i e w . It i s known that bladder c o n t r o l can be improved by r e g u l a r l y e x e r c i s i n g p e l v i c f l o o r muscles (Henderson, 1988). In a d d i t i o n to reducing bladder i n f e c t i o n s , the s o c i a l problems caused by poor bladder f u n c t i o n i n g are ga i n i n g a t t e n t i o n from nurse r e s e a r c h e r s : U r i n a r y i n c o n t i n e n c e i s a source of embarassment which may r e s u l t in c u r t a i l m e n t of a c t i v i t i e s and s o c i a l i n t e r a c t i o n l e a d i n g to i s o l a t i o n . At best, i t i s a nuisance (Henderson, 1988, p. 185). The women needed to know t h a t , although i t probably would take s e v e r a l months, they would e v e n t u a l l y a t t a i n a reasonable l e v e l of bladder c o n t r o l , even though s e n s a t i o n s of bladder f u l l n e s s and v o i d i n g might not ever completely r e t u r n a f t e r t h i s r a d i c a l surgery. The women's experiences with v a g i n a l h e a l i n g and r e c o n s t r u c t i o n are d i s c u s s e d under the l a s t heading in p h y s i c a l recovery a f t e r surgery. 3. Vaginal Healing and Re c o n s t r u c t i o n Two women who had va g i n a l r e c o n s t r u c t i o n at the same time as the r a d i c a l surgery d e s c r i b e d having pain in the va g i n a l area f o r at l e a s t 3 months a f t e r surgery. T h i s v a g i n a l pain became severe during the d a i l y removal and i n s e r t i o n of the va g i n a l mold. One woman found t h a t removing the mold was almost i n t o l e r a b l e : P: I j u s t got two p i l l s ( f o r pain) before I f i r s t change the mold myself, and I thought I was going to f a i n t , i t ' s j u s t h o r r i b l e pain, t e r r i b l e . I changed i t myself once a day to r i n s e i n s i d e . That was very d i f f i c u l t ; i t took me a week to l e a r n . I used l u b r i c a t i o n , but j u s t p u l l i n g i t out; that was the worse t h i n g . It was l i k e knives going through me. That was the worst pain I've had in my l i f e . The t h i n g t h a t I found out was th a t none of the nurses knew how to do i t . The f i r s t time my doctor di d i t and the nurses j u s t watched. The next time the nurse had to do i t by h e r s e l f , and she'd never done i t before, so she was scared, and I was scared. The second woman a l s o had extreme d i f f i c u l t y and severe v a g i n a l pain when changing the mold: P: Doing the mold change every day was u n b e l i e v a b l y p a i n f u l ; i t was very d i f f i c u l t to remove and ten times more d i f f i c u l t to get back i n . I l i t e r a l l y had t o use a l l my st r e n g t h to do the procedure and at the end I would be sweating and c r y i n g and bl e e d i n g . Everytime I'd r i p t i s s u e and i t took a l l my s t r e n g t h , and i t was so p a i n f u l t h a t I r e a l l y d i d n ' t want to do i t , but I had to do it'. It was d i f f i c u l t because I had to hurt myself, but I managed and once i t was done i t d i d n ' t hurt any more, and yet I would be a n t i c i p a t i n g f o r the next 24 hours u n t i l I had to do i t again. The f i r s t woman d e s c r i b e d other problems with the vag i n a l mold, e s p e c i a l l y her fe a r t h a t she would damage the r e c o n s t r u c t e d area: P: P u t t i n g i t in was j u s t a l i t t l e b i t e a s i e r but t a k i n g i t out took a l l my s t r e n g t h . I t r i e d to take i t out when I was l y i n g down, standing up, s q u a t t i n g , and i t j u s t d i d n ' t make any d i f f e r e n c e . Changing the mold was the t h i n g t h a t I dreaded; I was so scared everytime I was supposed to change i t . You're only allowed to keep i t out 10 minutes. There was a s u c t i o n i n s i d e , even though there was a hole through i t ; I j u s t couldn't get i t out, then suddenly i t would come out, and I thought, "I hope they s t i t c h e d the vagina in the back so i t ' s not going to come out," because I was r e a l l y p u l l i n g ; my hands were a l l cut up and sore when I s t i l l had the nylon s t r i n g in the mold; i t took such a f o r c e to get i t out. I a l s o had a problem with t h a t s t r i n g ; i t was always coming o f f , and I had to go back, and they had to r e s t r i n g i t . I f i n a l l y j u s t d i d i t myself with c o t t o n s t r i n g and t h a t was the end of t h a t problem. T h i s woman f e l t t h a t the shape, m a t e r i a l , and t i g h t f i t of her v a g i n a l mold were r e s p o n s i b l e f o r a f i s t u l a which occurred between the u r e t h r a and v a g i n a l w a l l . Urine then leaked i n t o the vagina, and she r e q u i r e d f u r t h e r surgery which caused more pain and trauma: P: It was a h o r r i b l e t h i n g , that mold. It was r e a l l y sharp at the bottom, where i t rubs a g a i n s t your u r e t h r a . I was always t e l l i n g them t h a t the mold was too b i g f o r my opening, but they would t e l l me, "No, no, i t i s the medium s i z e . " I t h i n k i t was very c r u e l the way i t was done. The mold i s r e a l l y c r u e l i t s e l f ; I don't know how anyone could t h i n k of such a t h i n g . I had a very hard, heavy t h i n g . What bothered me most i s that they cut i t with a s c a l p e l and i t l e f t rough edges. It was c u t t i n g me apart so I went back and t o l d my doctor, so she sent me to a t e c h n i c i a n and he smoothed i t out. He s a i d , "How could you wear t h a t ? " It was so hard. I thought that i t r e a l l y d i d cut the u r e t h r a ; i t was rubbing a l l the time there when I was walking. Then they had to r e p a i r the hole ( f i s t u l a ) . They had to take a piec e of the large l a b i a out and plug the hole, and th a t bothers me a l o t , i t ' s s t i l l sore (6 months a f t e r c l o s i n g the f i s t u l a ) . They t e l l me i t ' s the scar and i t ' s going to take awhile before i t s o f t e n s up. These women a l s o mentioned problems with v a g i n a l d i s c h a r g e and odor which were e a s i l y s o l v e d by douching and using p r e s c r i b e d creams. Although s t u d i e s on va g i n a l r e c o n s t r u c t i o n procedures r e p o r t problems with di s c h a r g e and odor, the problems caused by severe pain have not u s u a l l y been explored (Hampton; 1986; Lacey, Ste r n , Feigenbaum, H i l l , and Braga, 1988). An overview of the b e n e f i t s and problems of va g i n a l r e c o n s t r u c t i o n has been d e s c r i b e d in one study which giv e s a f e m i n i s t p e r s p e c t i v e ( C a i r n s and V a l e n t i c h , 1986). This study r e p o r t s t h a t , a f t e r v a g i n a l r e c o n s t r u c t i o n , women experience s e r i o u s problems with v a g i n a l s h r i n k i n g , the formation of scar t i s s u e , and pain and trauma during i n t e r c o u r s e . In the present study, besides severe pain from m a n i p u l a t i n g the v a g i n a l mold, both women a l s o experienced pain and b l e e d i n g from g r a n u l a t i o n t i s s u e i n the vagina. The removal of t h i s t i s s u e was necessary and u s u a l l y done by t o p i c a l a p p l i c a t i o n s of s i l v e r n i t r a t e . The procedure o f t e n caused severe pain: P: They had suggested w i t h i n 6 weeks, t o s t a r t having sex, and then they s a i d , "No, y o u ' l l need longer, probably about 8 or 10 weeks," j u s t because t h e r e was so much g r a n u l a t i o n , and th a t i t would be too uncomfortable f o r me, and the g r a n u l a t i o n t i s s u e was u s u a l l y open and b l e e d i n g . What was r e a l l y uncomfortable was when the s i l v e r n i t r a t e wasn't e f f e c t i v e enough and they had to take forceps and r i p i t o f f . I remember the doctor t h i n k i n g t h a t i t probably wouldn't be a l l that bad, and I remember f e e l i n g q u i t e awful afterwards. It never crossed my mind to take any p a i n - k i l l e r s before the examinations; what a dummy; I should have. It j u s t doesn't occur to me th a t I should take a pi 11 unless I'm i n acute p a i n , but looking back, I should have taken something to prevent t h a t p a i n . The women r e p o r t e d t h a t pain from the va g i n a l mold a l s o i n h i b i t e d m o b i l i t y . The mold had to be kept in p l a c e to avoid t i s s u e s h r i n k i n g during the f i r s t 3 months: P: I wanted to get up and get going, and everytime I would get going t h i s mold would hurt and I had to go l i e down again. That was dep r e s s i n g ; i t was 8 weeks and I was g e t t i n g my s t r e n g t h back. When I was walking I had a f e e l i n g the v a g i n a l mold was going to f a l l out of th e r e ; i t was rubbing and so p a i n f u l . Lying down was j u s t b e a u t i f u l , r e l a x i n g so t h a t the mold came in a l i t t l e more and d i d n ' t touch the scar t i s s u e . Everybody t o l d me a f t e r 6 weeks y o u ' l l be ok, but I wasn't because the mold was j u s t h o r r i b l e . Severe pain in the r e c o n s t r u c t e d vagina g r a d u a l l y lessened. However, 18 months a f t e r r a d i c a l surgery and vag i n a l r e c o n s t r u c t i o n , and 14 months a f t e r her u r e t h r a l f i s t u l a r e p a i r , t h i s woman s t i l l experienced p e l v i c tenderness and heaviness during strenuous p h y s i c a l act i v i t y : P: What I t r i e d to do i s r i d e the horse. When I walk i t ' s f i n e , but once he s t a r t s t r o t t i n g or c a n t e r i n g then i t hurts l i k e anything. They t o l d me I can do anything now, even horseback r i d i n g , but I can't, i t ' s too sore. It j u s t f e e l s l i k e e v e r y t h i n g i s going to come o u t . . . i t ' s a h o r r i b l e f e e l i n g . Even a trampoline bothers me. It's a f e e l i n g t h at e v e r y t h i n g i s going to tear o f f and f a l l out. The women were t o l d to wear the va g i n a l mold c o n s t a n t l y f o r 3 months, then have frequent i n t e r c o u r s e to c o n d i t i o n the g r a f t e d s k i n of the r e c o n s t r u c t e d vagina and prevent the new opening from e x c e s s i v e s h r i n k i n g during the f i r s t 6 months. However, both women found t h a t having frequent i n t e r c o u r s e was o f t e n impossible due to pain, f a t i g u e , lack of d e s i r e , or lack of a sexual p a r t n e r . Both women were concerned t h a t the re c o n s t r u c t e d vagina would shr i n k too much to allow comfortable and enjoyable i n t e r c o u r s e : P: I could leave the mold out f o r 1/2 an hour. But I s t i l l f e l t t h a t i t was s h r i n k i n g ; everytime I l e f t i t out f o r 1/2 an hour, i t was hard to get back i n s i d e . I d i d n ' t want to leave i t out that long; I was in a hurry to put i t in again because I was so scared i t was going to s h r i n k . P: At f i r s t they s a i d I should s t a r t i n t e r c o u r s e 6 weeks a f t e r the o p e r a t i o n , then they s a i d "No, i t is s t i l l too tender in t h e r e . " I had too much g r a n u l a t i o n t i s s u e going on; i t would be too p a i n f u l . But by 3 months I should have been i n d u l g i n g , but I wasn't, and we were worried about t i s s u e shrinkage because I had broken two molds. T h i s woman t r i e d to keep the vagina from s h r i n k i n g by using a d i l a t o r , but she found i t d i f f i c u l t to keep "poking" i n t o the p a i n f u l v a g i n a l area: R: Did anyone mention using a d i l d o ? P: Not in so many words, but I went out and got one anyway, and I was using that a f t e r I got r i d of tha t l a s t mold. I guess i t was almost 4 months a f t e r the surgery and they were concerned t h a t because I wasn't with my husband t h a t t h e r e would be t i s s u e shrinkage f o r the f i r s t 6 months. I was supposed to put i t (the d i l a t o r ) in three times a day, everyday, and I j u s t couldn't do i t ; I co u l d not put that much a t t e n t i o n on my g e n i t a l s ; I'd had i t a lready with my vagina and I stopped doing i t ; l i k e maybe doing i t every second day. Prodding and poking; i t j u s t had gotten to be too much. I don't thi n k I've done any i r r e p a r a b l e damage, but I o f t e n wonder i f I should have j u s t kept at i t , f o r another 3 months, f o r my own sake, would i t be e a s i e r f o r me now? But i t ' s too l a t e now, unless I had an a c t i v e l o v e r , which I don't. These women a l s o d e s c r i b e d t h a t they needed t h e i r sexual p a r t n e r s to be g e n t l e ; e s p e c i a l l y f o r the f i r s t e x perience of i n t e r c o u r s e a f t e r v a g i n a l r e c o n s t r u c t i o n : P: I took a l o v e r . I thin k i t must have been about 4 months a f t e r the o p e r a t i o n , and i t was a b s o l u t e l y fabulous. I d i s c o v e r e d that champagne can do wonders to deaden s e n s i b i l i t i e s and s e n s i t i v i t i e s . I r e a l i z e d t h a t i t r e a l l y d i d help to have a few g l a s s e s of wine before I made love. I was lucky in t h a t he was e x t r o d i n a r i l y s e n s i t i v e to me and to my needs and put h i s own needs secondary. He went a l l out to make sure t h a t i t would be as wonderful and as l e a s t p a i n f u l as p o s s i b l e f o r me. And i t was p a i n f u l ; 10 to 15 minutes (of v a g i n a l / p e n i 1 e i n t e r c o u r s e ) at t h a t time was my a b s o l u t e maximum, and a l s o , p h y s i c a l l y , I was weak as w e l l . It s t i l l i s important t h a t a man i s s e n s i t i v e to my needs because i t s t i l l hurts a l o t , i t r e a l l y does hurt having i n t e r c o u r s e . Unless I get i n c r e d i b l y aroused and p a s s i o n a t e , then I could care l e s s . 1 do t e l l my partner ahead of time, but i t depends on the man; some are more s e n s i t i v e than o t h e r s ; the l a s t couple of times I don't th i n k they've r e a l l y understood at a l l , and i t was a c t u a l l y more p a i n f u l . The doctor says I should t r y d i f f e r e n t p o s i t i o n s , but I've never been with anyone long enough to s t a r t experimenting. The second woman a l s o d e s c r i b e d needing her partner to be g e n t l e and communicative because of the severe v a g i n a l p a i n : P: My husband was very s u p p o r t i v e . He was there ( i n the doctor's o f f i c e ) every time with me so he knew what was going to happen. We t r i e d ( i n t e r c o u r s e ) and i t was ok. It was p a i n f u l f o r me, and I guess he f e l t l i k e he was h u r t i n g me, and we had to e x p l a i n to each other, but i t ' s not going to be l i k e t h a t f o r e v e r . She d e s c r i b e d the i n t e n s i t y of the va g i n a l pain during her f i r s t experiences of i n t e r c o u r s e a f t e r surgery: P: It was j u s t l i k e somebody was c u t t i n g me with a k n i f e ; I was scared each time, and t r y i n g to make i t as sh o r t as p o s s i b l e because of th a t pain but i t ' s g e t t i n g b e t t e r a l l the time. T h i s woman, who had a r e g u l a r p a r t n e r , d e s c r i b e d sometimes e x p e r i e n c i n g almost p a i n l e s s i n t e r c o u r s e s e v e r a l months a f t e r surgery. It i s known that women must p e r s i s t in p a i n f u l and u n s a t i s f a c t o r y attempts at i n t e r c o u r s e f o r months a f t e r v a g i n a l r e c o n s t r u c t i v e surgery ( C a i r n s and V a l e n t i c h , 1986). Both women s t a t e d t h a t t h e i r sexual d e s i r e and arousal returned slowly and only a f t e r v a g i n a l pain decreased: R: When d i d you s t a r t f e e l i n g sexual d e s i r e or tens ion? P: Only r e c e n t l y (18 months a f t e r s u r g e r y ) . We don't t a l k about i t , but there i s t h a t f e e l i n g that i t i s g e t t i n g b e t t e r . Just very r e c e n t l y , maybe 2 weeks, i t ' s been much b e t t e r . The pain i s there but i t ' s bearable; i t ' s not as uncomfortable as i t used to be. There are some p o s i t i o n s I can't do; i t ' s very p a i n f u l . J ust a few th a t I can do. It f e e l s l i k e i t ' s swollen sometimes. I can f e e l t h a t i t i s sh o r t e r than when I had the mold i n , but i t doesn't c r e a t e any problems. The second woman, who d i d not have a r e g u l a r p a r t n e r , r e p o r t e d that v a g i n a l s h r i n k i n g and scar t i s s u e was causing increased pain during her i n f r e q u e n t experiences with i n t e r c o u r s e : P: (12 months a f t e r the surgery and r e c o n s t r u c t i o n ) There's pain at the i n t r o i t u s because i t ' s q u i t e t i g h t t h e r e . I haven't had enough frequent i n t e r c o u r s e . The t i s s u e has shrunk and i t i s t i g h t where the scar t i s s u e i s , and i t i s p o s s i b l e t h a t i f I don't have enough i n t e r c o u r s e they may have to cut i t open and do some l i t t l e minor surgery t h e r e . I was worried, my God, what i f there i s too much t i s s u e shrinkage? I mean I d i d n ' t want to have to go through t h i s a l l again, but there wasn't too much; i t ' s j u s t at the entrance where the scar t i s s u e i s q u i t e s t i f f . The other problem i s t h a t my vagina could be longer so t h a t sometimes when tha t immediate t h r u s t , when the penis goes in and i t h i t s the end, can be very p a i n f u l , deep i n s i d e and a l s o at the entrance as w e l l . I t ' s been more than a year now, and i t ' s s t i l l very p a i n f u l , and I can't go f o r more than 10 or 15 minutes. I couldn't make love everyday, t h a t ' s f o r sure, i t would j u s t be simply too p a i n f u l . During the second i n t e r v i e w f o r t h i s study, 6 months l a t e r , she s t a t e d t h a t v a g i n a l pain during i n t e r c o u r s e was s t i l l severe. She f e l t depressed t h a t the r e c o n s t r u c t i o n was not h e a l i n g as she had expected: P: The pain i s g e t t i n g worse. The r a t e of i n t e r c o u r s e i s about the same as i t always was which i s n ' t much; very s p o r a d i c . The l a s t time I made love i t was too p a i n f u l and I had to stop. U s u a l l y I could s u s t a i n i t f o r at l e a s t 10 minutes, which was something, and now I can't. The pl e a s u r e i s not worth the pai n . I went to my GP l a s t week and I s a i d , "Look, t h i s i s r i d i c u l o u s , i t ' s j u s t too p a i n f u l , and I want to know how much shrinkage has the r e been?" And he s a i d there i s o b v i o u s l y too much scar t i s s u e and shrinkage at the entrance but 112 a l s o i n s i d e , t h ere's been some narrowing as w e l l . E i t h e r I ' l l have to use a d i l a t o r or I don't know i f t h e y ' l l g ive me some estrogen to help the scar t i s s u e . A l l I can say i s t h a t when I f i r s t s t a r t e d making love a f t e r the surgery i t was uncomfortable, but i t was never as p a i n f u l as i t i s now. The doctor thought I should only f e e l pain at the entrance where the scar t i s s u e i s , but I don't, there i s such tenderness i n s i d e , I mean very p a i n f u l spots. Even i f I'm doing a douche, I could shock myself with the pain, and I've b a r e l y even touched. When I'm having i n t e r c o u r s e , the end of the penis j u s t h i t s the wrong way, in the wrong spot, you know, i t h u r t s , you f e e l i t shoot through your whole body, i t ' s so tender. I a c t u a l l y f e l t s i c k afterwards; l i k e nauseated from the pain. T h i s severe pain caused her to avoid i n t e r c o u r s e . She g r i e v e d her i n a b i l i t y f o r normal sexual f u n c t i o n i n g : P: I t h i n k , because now i t hurts so much, I have a fea r of proceeding because i t may be j u s t cut dead. It j u s t won't be s u c c e s s f u l . I've become very sad j u s t the l a s t couple of weeks, t h i n k i n g I can't f u n c t i o n . I'm not f u n c t i o n i n g normally, the way I thought I would be able t o . C l e a r l y , v a g i n a l r e c o n s t r u c t i o n f o r these two women caused prolonged and severe pain and problems with sexual enjoyment: P: In ge n e r a l , having orgasms i s not r e a l l y my problem; i t ' s the pa i n . I haven't n o t i c e d any d i f f e r e n c e with masturbation. I suppose t h a t ' s not e n t i r e l y t r u e ; i t seems to take more e f f o r t . I have had orgasms with my new vagina, but I'd say i t was d e f i n i t e l y a mental t h i n g , more than a p h y s i c a l t h i n g . There i s some lo s s of s e n s a t i o n in c e r t a i n areas i n s i d e the vagina, there are some places where there i s n ' t too much f e e l i n g . In a medical study on va g i n a l r e c o n s t r u c t i o n , 8 women answered a q u e s t i o n n a i r e at l e a s t 12 months a f t e r surgery with the f o l l o w i n g r e s u l t s : Only 2 p a t i e n t s have used the neovagina f o r i n t e r c o u r s e ; in 1 , the experience i s rep e a t e d l y s a t i s f a c t o r y , in the other i t i s only p a r t i a l l y s a t i s f a c t o r y . F i v e p a t i e n t s s t a t e d t h a t they were not i n t e r e s t e d in sex and the sexual i n t e r c o u r s e was unimportant to them....In g e n e r a l , the p a t i e n t s seemed to have a poor understanding of the t e c h n i c a l aspects of c o n s t r u c t i n g the neovagina....We hoped to le a r n more about the 114 p s y c h o s e x u a l b e n e f i t s o f t h e p r o c e d u r e t h r o u g h t h e u s e o f t h e q u e s t i o n n a i r e , b u t o n l y 8 p a t i e n t s i n t h e n e o v a g i n a g r o u p r e t u r n e d t h e q u e s t i o n n a i r e , a n d many a n s w e r s w e r e n o t f i l l e d i n ( L a c e y e t a l , 1 9 8 8 , p . 1280 - 8 3 ) . T h e p a i n o f v a g i n a l r e c o n s t r u c t i o n a n d t h e n e e d f o r s e x u a l c o u n s e l l i n g a f t e r s u r g e r y was n o t n o t e d i n t h i s m e d i c a l s t u d y . Y e t , t h e s t u d y ' s r e s u l t s i n d i c a t e a h i g h r a t e o f s e x u a l d i s s a t i s f a c t i o n a n d a l s o a r e l u c t a n c e t o d i s c u s s p s y c h o s e x u a l i s s u e s , a t l e a s t t h r o u g h q u e s t i o n n a i r e s . S e v e r e p a i n d u r i n g i n t e r c o u r s e was a l s o r e p o r t e d b y t h e woman who h a d a p a r t i a l v a g i n e c t o m y a n d n o r e c o n s t r u c t i o n . S h e h a d s e v e r e s w e l l i n g i n t h e v a g i n a a n d l a b i a . A t t h e t i m e o f t h e f i r s t i n t e r v i e w , s h e f e l t t h a t u n s a t i s f a c t o r y i n t e r c o u r s e a n d h e r l a c k o f s e x u a l d e s i r e c o u l d p o s s i b l y e n d h e r m a r r i a g e : P: I c a r e a b o u t t h e v a g i n a , t o h a v e a g o o d l i f e l i k e b e f o r e , b u t I know i t ' s n o t p o s s i b l e . My d o c t o r t o l d me a b o u t t h e r e c o n s t r u c t i o n , h e c o u l d d o i t i n 2 y e a r s , b u t I'm s c a r e d a b o u t i t . I t o l d t h e d o c t o r t h a t t h e s e x u a l l i f e d o e s n ' t w o r k ; we t r i e d a f t e r t h e o p e r a t i o n a n d i t h u r t . I d i d n ' t w a n t t o h a v e t h a t . I s a i d , " I f i t ' s n o t p o s s i b l e t o h a v e a s e x u a l l i f e , t h e n I ' d r a t h e r d i v o r c e h i m . " I t o l d him that so he knows. For the husband, I don't think i t is enough. In the next 6 months, however, the vaginal pain lessened and she began to enjoy intercourse. However, the swel l ing and pain in the vaginal area, and her fear that the cancer would re turn , depressed her sexual desire even 12 months af ter surgery. This woman and her partner needed sexual counsel l ing in order to reduce her fears and increase communication between them: P: Our sex l i f e is gett ing bet ter . I always avoid doing that , but he's the man. Sometimes I don't have any pain. Sometimes I feel l i ke making love. My husband doesn't say how far he is going i n ; he just says about the swe l l ing . When there is no swe l l ing , I feel bet ter . Otherwise i t hur ts , even just ly ing there. He does put his penis inside the vagina and I don't know how f a r , maybe a l l the way. I am always a f ra id so I'm s t i f f and tense. I think he's going to make a hole in me. I've never f e l t inside to see how much vagina is l e f t . I'm a f ra id to do that . I don't think he enters that much because in the evening there is more swel l ing . Sometimes he s ta r ts and I say, "No." One day I s a i d , "If you want to do th is then let me l i e down a l l day long so there won't be so much s w e l l i n g . " The doctor says, "More i n t e r c o u r s e and i t w i l l s t r e t c h . " If I knew f o r sure t h a t the cancer was gone then i t would be l i k e before. I b e l i e v e i f I don't get cancer again, then i t (sexual d e s i r e ) w i l l come back. The lack of v a g i n a l l u b r i c a t i o n was so l v e d by ge l s and massage creams such as coconut o i l . The women d i d not know i f t h e i r r e c o n s t r u c t e d vaginas would ever produce l u b r i c a t i o n : P: Not enough l u b r i c a t i o n , anyways, I've never been e x c i t e d enough, to t e l l you the t r u t h , to r e a l l y make a d i f f e r e n c e . If there i s n ' t t h a t l u b r i c a t i o n then I would use a g e l , and I u s u a l l y would anyways because one s i d e of my r e c o n s t r u c t e d vagina i s longer than the other, and that was another main worry; t h a t I wouldn't have enough depth f o r proper p e n e t r a t i o n . It was ex p l a i n e d to me th a t i f I had r e g u l a r i n t e r c o u r s e t h a t would probably r e c t i f y i t s e l f . I t ' s c e r t a i n l y not what i t used to be; I mean I can s t i l l be aroused but th a t pain does i n t r u d e . For these 3 women, sexual d e s i r e or t e n s i o n came back s l o w l y . They began f e e l i n g a d e s i r e f o r i n t e r c o u r s e 6 to 12 months a f t e r the r a d i c a l surgery. The women s t a t e d t h a t r e g a i n i n g sexual d e s i r e and 117 e n j o y i n g sexual i n t e r c o u r s e was s i g n i f i c a n t because t h i s i n d i c a t e d to them t h a t complete recovery was going to be poss i b1e: P: I'm s t a r t i n g to have p l e a s u r a b l e f e e l i n g s i n s i d e . My sexual t e n s i o n d i d n ' t come back u n t i l t h i s summer (1 year a f t e r s u r g e r y ) . I was kind of g i v i n g up on t h a t , but i t came back and I was r e a l l y glad t h a t i t d i d . It took q u i t e awhile I guess because i t was h u r t i n g t h a t much th a t I di d n ' t have any d e s i r e f o r i n t e r c o u r s e . Now, i t doesn't hurt i n s i d e ; i t ' s a good f e e l i n g . P: When I f i r s t had i n t e r c o u r s e , which was about 4 months a f t e r surgery; I r e c a l l r e a l l y enjoying having sex, but I don't r e c a l l a huge amount of d e s i r e , l i k e overwhelming d e s i r e , l i k e I wanted to make love to t h i s man. I j u s t remember t h a t once g e t t i n g i n t o i t , I r e a l l y enjoyed i t , and of course there was a c e r t a i n amount of d e s i r e then, but no bui l d - u p or p h y s i c a l f e e l i n g s . The l a s t time I made love, which was about a month or so ago, th a t was probably the s t r o n g e s t I've ever had; of a c t u a l buildup of d e s i r e . So, i t ' s s t a r t i n g to come back. Although women in other s t u d i e s have "wished" f o r p r o f e s s i o n a l sex c o u n s e l l i n g , t h i s s e r v i c e has not been r o u t i n e l y provided ( C a i r n s and V a l e n t i c h , 1986). Concerns about a c h i e v i n g orgasm a f t e r t h i s surgery, f o r example, needed to be explored: P: I don't th i n k I ' l l be able to have orgasms l i k e I d i d b e fore. One part of the large l a b i a s t i l l f e e l s numb, and the c l i t o r i s i s numb. So i t ' s probably going to be awhile before the f e e l i n g s are r e s t o r e d . I was j u s t under the impression t h a t I wouldn't be able to have one (an orgasm) because of the new vagina. I have to be s a t i s f i e d , t h e re's nothing I can do; or i s there something they can do about i t ? F i n a l l y , 1 woman, who had a t o t a l vaginectomy but did not have r e c o n s t r u c t i o n a f t e r the surgery, s t a t e d t h a t her sexual d e s i r e and arousal returned w i t h i n 3 months a f t e r surgery. However, she d i d not have to deal with v a g i n a l pain and a l s o regained p h y s i c a l s t r e n g t h much more q u i c k l y than the women who had v a g i n a l r e c o n s t r u c t i o n . She s t i l l experienced orgasm by masturbat i ng: P: I do masturbate. I probably d i d more before my s u r g e r i e s than I have s i n c e , which i s kind of s u r p r i s i n g because I haven't had any s o r t of sexual i n t e r c o u r s e s i n c e my surgery e i t h e r . I s t i l l do, but only once i n awhile. I t ' s j u s t as p l e a s u r a b l e . It f e e l s f i n e ; I mean, I c e r t a i n l y have outer s e n s a t i o n s with no problem. When encouraged by the i n t e r v i e w e r , the women des c r i b e d some of t h e i r sexual needs and experiences, but most were h e s i t a n t and d i d not spontaneously give d e t a i l e d d e s c r i p t i o n s . These women d i d not r e c e i v e sexual c o u n s e l l i n g although they were concerned about t h e i r sexual enjoyment and the s a t i s f a c t i o n of t h e i r p a r t n e r s f o r many months a f t e r t h i s surgery. The problem of r e c e i v i n g sexual c o u n s e l l i n g was de s c r i b e d in the a u t o b i o g r a p i c a l essay of a student nurse who had r a d i c a l surgery f o r v a g i n a l cancer. T h i s young woman had the knowledge and a s s e r t i v e n e s s to arrange sexual c o u n s e l l i n g f o r h e r s e l f when she r e a l i z e d t h a t she was having s e r i o u s problems with sexual enjoyment a f t e r her surgery: I r e t u r n e d to the surgeon to ask about my p e l v i c nerves. i t o l d him I had not been able to have s e n s a t i o n and asked, "What about orgasm?" My des p a i r and anger were apparent. He d e f e n s i v e l y t o l d me he hadn't cut any of those nerves and any such problems were " A l l in my head." I was enraged at h i s a t t i t u d e and r e a l i z e d t h a t he j u s t d i d n ' t know how to address s e x u a l i t y with h i s p a t i e n t s . The p s y c h i a t r i c nurse from the h o s p i t a l was my next resource. She was great, both because she l i s t e n e d 1 20 as I v e n t i l a t e d and because she s a i d she di d n ' t know how to answer my questions; she admitted her l i m i t a t i o n s openly and f r e e l y . She d i d not f e e l she had to know i t a l l and h e l p f u l l y r e f e r r e d me to a p s y c h i a t r i s t . T h i s man had had experience t r e a t i n g men who wanted to become women and who had s u r g i c a l l y c r e a t e d vaginas l i k e mine. He was j u s t what I needed because he had the medical knowledge and the understanding to deal with my problems (Burger, 1981, p. 49). A major reason f o r the lack of sexual c o u n s e l l i n g a f t e r surgery i s the h i s t o r i c a l r e p r e s s i o n of female sexual needs. Language c r e a t e s an i n d i v i d u a l ' s s u b j e c t i v e experience, and women are r e l u c t a n t to seek help f o r t h e i r sexual needs because they do not have a language which a c c u r a t e l y d e f i n e s and approves of female sexual needs ( E h r e n r e i c h and E n g l i s h , 1978). The E n g l i s h language, in p a r t i c u l a r , has repressed the s u b j e c t i v e experience of female s e x u a l i t y . For example, Mort (1987) comments t h a t female s e x u a l i t y i n the 19th century was de f i n e d by men who held p o l i t i c a l , economic, and s o c i a l power i n England. The emerging medical p r o f e s s i o n p u b l i s h e d i n a c c u r a t e and r e p r e s s i v e d e f i n i t i o n s about female s e x u a l i t y which e f f e c t i v e l y e l i m i n a t e d the r e a l i t y of female sexual f e e l i n g s and 121 d e s i r e . Women's sexual f e e l i n g s were viewed as dormant and only developed with experience. Many p h y s i c i a n s and other i n f l u e n t i a l p r o f e s s i o n a l s b e l i e v e d that e q u a l i t y in sex d e s i r e was c o n t r a r y to an a l l powerful inherent law of nature (Mort, 1987). These d e f i n i t i o n s repressed female sexual needs and have had l a s t i n g e f f e c t s on women's s u b j e c t i v e experiences of t h e i r s e x u a l i t y . Burger (1981) d e s c r i b e s her experience with a language t h a t continues to r e p r e s s female sexual needs. Her success in a c h i e v i n g sexual s a t i s f a c t i o n confirms the b e n e f i t s of sexual c o u n s e l l i n g a f t e r r a d i c a l surgery f o r g y n e c o l o g i c a l cancer: I had never thought of myself as " s e x u a l l y d i s a b l e d " but masturbation had been a taboo t h a t I learned from my f a m i l y . I don't remember ever d i s c u s s i n g i t at home. I do remember funny cracks about developing warts on your hands or going crazy. I knew these t h i n g s weren't t r u e , but masturbation was f o r other people. My myths about masturbation s t r e t c h e d a m i l e long. However, I had to r e l e a r n how to have good s e n s a t i o n s a f t e r my surgery. T h i s process of l e a r n i n g went a g a i n s t my u p b r i n g i n g ; the idea of s t r o k i n g my t h i g h s and g e n i t a l s to s t i m u l a t e the nerves was something no one I knew d i d to themselves. I needed permission. 122 The p s y c h i a t r i s t gave me e x e r c i s e s to do with a device which gave me the f e e l i n g of being able to squeeze with t h i s new vagina. New doors opened and rays of hope began to f i l t e r i n slowly (Burger, 1981, p. 50). Summary In t h i s second major category, P h y s i c a l Recovery A f t e r R a d i c a l Surgery For Gy n e c o l o g i c a l Cancer, the women d e s c r i b e d e x p e r i e n c i n g prolonged p h y s i c a l weakness a f t e r r a d i c a l surgery. They needed between 3 and 12 months to r e g a i n adequate s t r e n g t h and resume everyday a c t i v i t i e s . The women experienced f r u s t r a t i o n from being i n a c t i v e and dependent on others during t h i s time. Some women developed s e r i o u s c o m p l i c a t i o n s which i n h i b i t e d r e g a i n i n g s t r e n g t h even 1 year a f t e r surgery. The women a l s o had problems with d i a r r h e a , bowel i n c o n t i n e n c e , c o n s t i p a t i o n , and bladder f u n c t i o n i n g . Problems with bladder f u n c t i o n i n g were s t i l l present at the time of the i n t e r v i e w s . Vaginal h e a l i n g a f t e r r e c o n s t r u c t i o n caused severe pain during the change of the va g i n a l mold and during i n t e r c o u r s e . The women experienced problems with the mold's f i t , with g r a n u l a t i o n t i s s u e , l u b r i c a t i o n , v a g i n a l s h r i n k i n g , loss of l a b i a l and c l i t o r a l s e n s a t i o n , and depressed sexual d e s i r e . The women were r e l u c t a n t t o d i s c u s s t h e i r sexual needs and needed p r o f e s s i o n a l sexual c o u n s e l l i n g a f t e r t h i s surgery. The t h i r d and l a s t major category i s S e l f -image A f t e r Radical Surgery For G y n e c o l o g i c a l Cancer. T h i s category c o n t a i n s the women's d e s c r i p t i o n s of how b e l i e f s and f e e l i n g s about cancer and changes in body s t r u c t u r e and f u n c t i o n a f f e c t e d s e l f - i m a g e and the women's d e s c r i p t i o n s of s e l f - w o r t h a f t e r t h i s surgery. I I I . SELF-IMAGE AFTER RADICAL SURGERY  FOR GYNECOLOGICAL CANCER The t h i r d major category developed from the women's d e s c r i p t i o n s of how r a d i c a l surgery f o r g y n e c o l o g i c a l cancer a f f e c t e d s e l f - i m a g e or a woman's unique b e l i e f s and images about h e r s e l f . The surgery's e f f e c t s on s e l f - i m a g e were organized under three sub-headings: B e l i e f s and F e e l i n g s About Cancer, Changes in Body S t r u c t u r e and F u n c t i o n , and P e r c e p t i o n of Self-Worth. 1. B e l i e f s And F e e l i n g s About Cancer Before d i s c u s s i n g how b e l i e f s and f e e l i n g s about cancer a f f e c t e d the women's se l f - i m a g e , i t i s u s e f u l to d i s c u s s the i n f l u e n c e of metaphorical language which i s commonly used to d e s c r i b e cancer. Metaphorical language has h i s t o r i c a l l y developed to d e s c r i b e symptoms of mysterious d i s e a s e s such as cancer. However, the metaphorical language used f o r cancer, f o r example, " m a l i c i o u s growth," " e v i l c e l l s , " or "hungry monster," n e g a t i v e l y a f f e c t the s e l f - i m a g e of i n d i v i d u a l s who have cancer (Sontag, 1978). Such negative e f f e c t s on s e l f - i m a g e i l l u s t r a t e how language c r e a t e s meaning f o r the s u b j e c t i v e experience in s o c i a l l y s p e c i f i c ways. That i s , the metaphorical language used to d e s c r i b e cancer has c r e a t e d e v i l and s o c i a l l y immoral meanings f o r the s u b j e c t i v e experiences of many i n d i v i d u a l s who experience cancer: P u n i t i v e notions of d i s e a s e have a long h i s t o r y and such notions are p a r t i c u l a r l y a c t i v e with cancer. Cancer i s t r e a t e d as no mere d i s e a s e , but a l e t h a l , shameful d i s e a s e and a demonic enemy. The term, cancer, has become a metaphor to d e s c r i b e s u b j e c t s of deepest dread; c o r r u p t i o n , decay, p o l l u t i o n , weakness, and immorality (Sontag, 1978, p. 12). The r e f o r e , although cancer o r g a n i z a t i o n s are beginning to p r o t e s t , the media and well-known p o l i t i c a l speakers, f o r example, p e r s i s t in using the word "cancer" to d e s c r i b e e v i l and s o c i a l l y immoral a c t s . T h i s i n t e r n a l i z e d s o c i a l message about cancer causes many i n d i v i d u a l s t o f e e l h orror and shame when they are diagnosed with cancer. The women's d e s c r i p t i o n s show t h a t the s u b j e c t i v e i n f l u e n c e of metaphorical language f o r cancer had negative e f f e c t s on s e l f - i m a g e . For example, one woman de s c r i b e d her vagi n a l cancer as an independent, e v i l f o r c e which would attack her i f she touched i t . She f e l t h o rror about her vagina. Even a f t e r the cancer was removed, she s t i l l f e l t d i s l i k e and f e a r about her vagina. These f e e l i n g s had a negative e f f e c t on s e l f -image because they prevented her from e x p l o r i n g and a c c e p t i n g the r e c o n s t r u c t e d vagina: P: When they t o l d me I had cancer, and th a t i t might k i l l me, I used to f e e l as though there was a r a t i n s i d e my vagina, an e v i l , v i c i o u s , malignant r a t . There was no way i n the world I was going to examine myself, even though I knew the c y s t was the r e , because i t was almost as i f the " r a t " would b i t e o f f my hand. It was r e a l l y t h a t f e e l i n g t h a t something was going to attack me i f I approached i t . And even now, to t h i s day; I have t o f o r c e myself to touch myself, to know how i t f e e l s in case there i s a change. A f t e r the surgery I d i d n ' t take a m i r r o r to look and see what t h i s a l l looked l i k e down here, and now I wished I had in the f i r s t weeks in the h o s p i t a l . I don't t h i n k I touched myself in months afterwards. During her second i n t e r v i e w f o r t h i s study, t h i s woman remembered a scene in a novel which c o n t r i b u t e d to her extremely negative f e e l i n g s about cancer. By r e c a l l i n g t h i s d i s t u r b i n g scene and e x p l o r i n g her f e e l i n g s , she gained i n s i g h t about her r e l u c t a n c e to touch her vagina: P: I'd read some book, and there was t h i s scene where the p o l i c e had found a body of a woman, and i t had been around f o r awhile, and the r e was a r a t i n s i d e the vagina, and they d e s c r i b e d i t coming out of the 128 vagina. And I guess t h a t image stuck in my mind; a c t u a l l y , i t was a book about a woman who had breas t cancer, so of course i t a l l c l i c k s t o g e t h e r ; t h a t ' s what my imagery i s . But i t was so r e a l . Not in a m i l l i o n years could I have examined myself because of f e e l i n g t h a t i t would attack and hurt me. I couldn't overcome that f e e l i n g . As she d e s c r i b e d t h i s image, she suddenly r e a l i z e d t h a t her f e e l i n g s of horror were p a r t l y due to negative metaphorical language about cancer. E x p l o r i n g her f e e l i n g s was a necessary step f o r reducing the fe a r and ac c e p t i n g her r e c o n s t r u c t e d vagina. However, not a l l women had obvious f e a r f u l or shameful f e e l i n g s about cancer. One woman s t a t e d she di d not f e e l horror or shame when touching the cancer in her vagina. Instead, she b e l i e v e d t h a t her body had cre a t e d cancer c e l l s f o r a reason: P: I could f e e l the growth i n s i d e me with my f i n g e r s . It f e l t l i k e me, l i k e a bump. There wasn't any fe a r there to touch i t ; i t wasn't anything e v i l . It was j u s t some c e l l s in my body that we should get r i d of before they spread. I always f e l t i t was more l i k e something t h a t I had c r e a t e d . I f e l t l i k e ; "Why have I l e t my body do t h i s ? " T h i s woman a l s o f e l t t h a t having cancer and being s e r i o u s l y i l l had produced p o s i t i v e e f f e c t s on her s e l f -image and a b i l i t y to enjoy l i f e : P: It wasn't c l e a r - c u t t h a t I was going to be f i n e from the beginning. It was obvious to me that I had to do something to r e a l l y p a r t i c i p a t e in g e t t i n g b e t t e r . As a process of having t h i s cancer and being i l l , I've become a l o t more s p i r i t u a l , and I'm f a r more a p p r e c i a t i v e of e v e r y t h i n g . I think I'm f a r more in tune with myself; I l i s t e n to my f e e l i n g s and my i n t u i t i o n a l o t more. And people get angry at the weather, and I'm j u s t glad to be able to be the r e . Just l e t t i n g t h i n g s be j u s t the way th a t they are. There's not t h a t s t r u g g l e to change t h i n g s l i k e t here was before. I think I'm happier than I was before my surgery. B e l i e f s and f e e l i n g s about having cancer are o f t e n b u r i e d i n the subconscious (Sontag, 1978). These suppressed f e e l i n g s can be explored by dream a n a l y s i s and a r t i s t i c e x p r e s s i o n ( S e g a l , 1984). For example, in a book about women's experiences with cancer, t i t l e d B i t s of Ourselves, women used c r e a t i v e w r i t i n g to r e l e a s e f e e l i n g s of f e a r about cancer: Such a greedy monster. He was w a i t i n g f o r me ther e in the darkness, s t i n k i n g of f e a r s and death. His t e e t h showed when he smiled at me and they already dripped with blood. His claws r i p p e d at me and I heard him laugh--and darkness began to c l o s e around me (Webb, 1986, p. 19). The r e f o r e , even though the use of metaphorical language f o r cancer causes negative e f f e c t s on s e l f -image, i t appears t h a t metaphorical language can a l s o be used to express common emotions about having cancer, f o r example, anger, shame, and f e a r . A l l 5 women fea r e d t h a t the cancer would r e t u r n . T h e i r f e a r had a negative e f f e c t on se l f - i m a g e s i n c e i t caused the women to d i s t r u s t t h e i r bodies and f e e l u n c e r t a i n about planning f o r t h e i r f u t u r e : P: A f t e r the surgery I could f e e l the nodes in my g r o i n , and they were d e f i n i t e l y inflamed and hard, and I remember f r e a k i n g out and going to the doctor s e v e r a l times, but i t was ok. P: I thought f o r months a f t e r the surgery. "Well, the cancer i s gone and I'm f i n e . " But the cancer may come back; you're never r e a l l y r i d of i t . When I heard that i t was cancer, I thought, " I t ' s the end." L i k e you can l i v e a l i t t l e longer, but i t ' s going to come back and f i n a l l y k i l l you. It could be somewhere e l s e . The worry w i l l always be t h e r e . The women needed emotional support to express f e e l i n g s about f r i g h t e n i n g p h y s i c a l symptoms, death and dying, and being p h y s i c a l l y dependent on o t h e r s . Expressing f e e l i n g s i n a s u p p o r t i v e atmosphere reduced f e a r and a n x i e t y , allowed greater sense of c o n t r o l , and, t h e r e f o r e , improved s e l f - i m a g e . In a d d i t i o n , r e g u l a r emotional support would l i k e l y e l i m i n a t e the need f o r tranqu i 1 i z e r s : P: I read in the paper, or somewhere, t h a t one out of two people get the cancer again, in someplace, so i t ' s p r e t t y s c a r y . I guess i t ' s an o l d book, but i t ' s r e a l l y s c a r y . I'm very t i g h t but t a k i n g t h i s nerve p i l l h e l p s . It keeps me at a n i c e l e v e l so I don't worry about i t so much; i t calms me down. Intense f e e l i n g s of f e a r and anxiety a l s o had a negative e f f e c t on self - i m a g e because these f e e l i n g s caused the women to p e r c e i v e themselves as em o t i o n a l l y f r a g i l e . They thought of themselves as being e m o t i o n a l l y weak f o r having u n c o n t r o l l a b l e intense f e e l i n g s of fear and anxiety which kept them from f u n c t i o n i n g . Some women were concerned t h a t these u n c o n t r o l l a b l e f e e l i n g s might mean t h a t they were becoming mentally i l l : P: I don't t r u s t my body. Sometimes I have a pain here, i n the s i d e and chest. I worry i f the cancer i s coming up a l l over my body. Everytime I get a pain, I shake. That makes me f r i g h t e n e d . The f e a r i s in my chest, t h r o a t , and back; i t ' s a hot f e e l i n g , and i t comes from the abdomen through the chest and i n t o the head. And then I don't know what to do; then I f e e l l i k e I'm cr a z y . Another woman experienced acute anxiety which suddenly s t a r t e d 1 year a f t e r her r a d i c a l surgery. T h i s a n x i e t y i n t e r r u p t e d her a b i l i t y to f u n c t i o n and f r i g h t e n e d her. She d e s c r i b e d her f e e l i n g s during these " a t t a c k s . " T h i s woman r e a l i z e d t h at these f e e l i n g s r e l a t e d t o her f i r m b e l i e f t h a t the cancer would r e t u r n and she would soon d i e : P: When I'm here by myself; I'm scared. My nerves are p l a y i n g t r i c k s on me. It scares me to death sometimes. Sometimes I get so d i z z y ; I get t h i s c o l d sweat on me; I'm a f r a i d I'm going to f a i n t . I t ' s t h i s t i n g l i n g f e e l i n g , a l l over the body. It's a t e n s i o n , almost the same t e n s i o n before you go to the o p e r a t i o n room. A kind of f e e l i n g t h a t I shake i n s i d e ; I'm s h i v e r i n g , but you can't see i t . At times i t came to the po i n t t h a t I had to hold on to something or concentrate r e a l l y hard on something, or I had a f e e l i n g t h a t I'm not going to be here. I j u s t have f e a r t h a t something i s going to snap. I'm a f r a i d I'm going t o end up mentally i l l i f something goes wrong with my head. My 133 mother s a i d she had e x a c t l y the same t h i n g when she had a hysterectomy when she was 40 and they thought i t was cancer, but i t wasn't. I j u s t can't understand why i t ' s coming so l a t e ; I've never had problems l i k e t h a t , and i t ' s been almost a year a f t e r the surgery. It used to happen once every few days, then suddenly i t s t a r t e d every day; i t depends on what s t a t e I am. If there's l o t s of people around me, and I'm busy, then i t doesn't happen. Th i s woman a l s o shared her f e e l i n g s about her recent d i s t r e s s i n g experience with a f r i e n d who died from breast cancer which had returned 1 year a f t e r d i a g n o s i s . Now t h a t i t was e x a c t l y 1 year s i n c e her own d i a g n o s i s , she b e l i e v e d t h a t her cancer would a l s o come back, and th a t she, too, would d i e . She a l s o s t a t e d t h a t she had not shared her intense f e a r about the cancer r e t u r n i n g with anyone, not even with her husband. Furthermore, she had kept her cancer and surgery a s e c r e t from her f r i e n d s because she was a f r a i d they would r e j e c t her i f they knew about her cancer. Her suppressed f e a r about dying from cancer and the lack of emotional support had caused acute a n x i e t y . With encouragement from the i n t e r v i e w e r , she f i n a l l y expressed and shared her f e a r s about the cancer r e t u r n i n g and about the process of dying: P: Every time something goes wrong with my body, i t ' s j u s t a haunting f e e l i n g . Sometimes i t j u s t comes out when I don't expect i t . I'm not a f r a i d of the pai n , j u s t the length of time before you d i e . How am I going to deal with i t and spend the l a s t few days? What am I going to do to make my f a m i l y accept t h i s ; how are they going to r e a c t to me? Am I going to hurt them too much? That would be the worst p a r t . She o f t e n c r i e d during the f i r s t i n t e r v i e w , and became tense, but she wanted to continue d e s c r i b i n g and e x p r e s s i n g her experiences and f e a r s because she f e l t t h a t the i n t e r v i e w e r was empathetic and accepted her emotional f r a g i l i t y . During her second i n t e r v i e w , she s t a t e d t h a t a f t e r she had expressed her f e a r s during the f i r s t i n t e r v i e w , the acute anxiety f e e l i n g s had not r e t u r n e d : P: I t h i n k t h a t the whole problem with my nerves i s t h a t I keep i t i n s i d e , and i t needs to come out. Once you t a l k to somebody, then i t s t a r t s to come out. My problem; t h a t I f e l t l i k e I was going out of my mind; i t a l l disappeared a f t e r the f i r s t time we t a l k e d . I don't have those f e e l i n g s any more. It would be great i f a group of women with the same experience could get together and f i n d out what helps to ease the f e e l i n g s ; of being alone or s o r r y f o r y o u r s e l f ; j u s t to f i n d out what you could do. T h i s woman's sel f - i m a g e had improved because she had experienced being e m o t i o n a l l y supported while e x p l o r i n g and f e e l i n g her f e a r s . She d i s c o v e r e d t h a t t h i s technique lessened emotional f r a g i l i t y and caused her to f e e l more e m o t i o n a l l y s t a b l e . In a d d i t i o n to the negative e f f e c t s of f e a r and anxiety on s e l f - i m a g e , the women a l s o experienced negative e f f e c t s on s e l f - i m a g e when they b e l i e v e d t h a t cancer was a shameful d i s e a s e and a punishment: P: I always thought t h a t i f something bad l i k e cancer happens to someone, th e r e i s a reason; i t ' s something bad in the past t h a t they d i d and are being punished f o r . When cancer happens to your body, i t ' s your f a u l t . Nobody knows how or why i t happens. I don't know how i t happened; I never d i d anything abnormal. It was a r e a l shock to me because I thought people got i t because a member of t h e i r f a m i l y had i t . For me, cancer was always a t h i n g t h a t I d i d n ' t want to know about. The s u b j e c t i v e experience t h a t having cancer i s shameful and a punishment a l s o comes from p u n i t i v e and m o r a l i s t i c metaphorical language about t h i s d i s e a s e . M o r a l i s t i c language has c r e a t e d b e l i e f s , f o r example, th a t cancer of the female r e p r o d u c t i v e and sexual organs i s due to immoral sexual a c t i v i t y (Sontag, 1978). One woman's self-image was o b v i o u s l y n e g a t i v e l y a f f e c t e d by her b e l i e f t h at g y n e c o l o g i c a l cancer was caused by sexual immorality: P: I remember, I had a f r i e n d who had p e l v i c cancer, and everybody j u s t turned away from her; a l l her f r i e n d s . They had to move because they had no f r i e n d s . You could catch i t or something. It was a long time ago, and nobody knew then where cancer came from or how i t was caused, and we wondered, "How d i d she get i t ? Was i t because she d i d n ' t l i v e her l i f e as she should?" It was her c e r v i x , and she was always known f o r t h a t (having sexual r e l a t i o n s with d i f f e r e n t men). I thought; "She's a person not to a s s o c i a t e with." And when I found out I had the same t h i n g , I thought t h a t they would f e e l the same way t h a t they d i d about her; t h a t I'm someone that they should be scared of, and they don't want to have anything to do with me because I have cancer. Maybe they could catch i t . Once I found out t h a t I had i t , I j u s t f e l t t h a t I d i d n ' t belong in s o c i e t y anymore. These myths and f e a r s about g y n e c o l o g i c a l cancer have been perpetuated by moral teachings and a l s o by frequent medical and media r e p o r t s which s t a t e t h a t women who have e a r l y sexual i n t e r c o u r s e , s e v e r a l d i f f e r e n t p a r t n e r s , and c o n t r a c t venereal warts are at higher r i s k f o r developing c e r v i c a l cancer. A f e m i n i s t w r i t e r has d i s c u s s e d the issue of c e r v i c a l cancer and i t s l i n k with venereal warts which i s caused by the human papiloma v i r u s ( D i c k i e , 1989). She p o i n t s outs t h a t t h i s v i r u s i s a c t u a l l y t r a n s m i t t e d from men to women during i n t e r c o u r s e , yet men have l i t t l e to fe a r from the v i r u s and, t h e r e f o r e , have not f e l t any pressure from p h y s i c i a n s or the media to seek treatment and use condoms to reduce the spread of t h i s d i s e a s e to women. Using a f e m i n i s t p e r s p e c t i v e to explore the common f e e l i n g t h a t g y n e c o l o g i c a l cancer i s a punishment f o r sexual immorality i s necessary to p r o t e c t women's self- i m a g e ( D i c k i e , 1989; Lamont and D e P e t r i l l o , 1980). The r e a c t i o n of others to the d i a g n o s i s of cancer a l s o had p o t e n t i a l l y negative e f f e c t s on the women's sel f - i m a g e . For example, although one woman i n the study laughed as she d e s c r i b e d her experience with a f r i e n d who b e l i e v e d t h a t cancer was contagious, she s t i l l f e l t r e j e c t e d by her f r i e n d ' s a c t i o n s : P: I had one f r i e n d , she t h i n k s i t ' s contagious. She used to come p r a c t i c a l l y every week; now, she only came one weekend, and she brought her own washcloth and towels which she never d i d befo r e . The women were concerned t h a t f r i e n d s might p i t y , d i s l i k e , or r e j e c t them i f they found out about the cancer. To avoid t h i s , some women d i d not t e l l t h e i r f r i e n d s about the d i a g n o s i s or surgery. However, not t e l l i n g f r i e n d s i n creased the women's f e e l i n g s of i s o l a t i o n which had a negative e f f e c t on se l f - i m a g e and reduced a v a i l a b l e emotional support: P: I never t o l d my f r i e n d s , and I don't know how they would f e e l . I can depend on them when I'm in t r o u b l e , but I don't want to t a l k to them about t h i s . I don't want to have t h a t f e e l i n g t h a t they know that there i s something wrong with me. I don't want them to p i t y me. I f e e l t h a t they're going t o t r e a t me d i f f e r e n t l y ; f e e l s o r r y f o r me, maybe r e j e c t me; not want to be f r i e n d s with me. Nobody knows what happened and t h a t ' s p r e t t y hard too. I t ' s j u s t a f e e l i n g t h a t I have t h i s b i g t h i n g t h a t I can't t e l l anybody; t h a t i s what makes me f e e l alone. P: The f e e l i n g t h a t I'm alone; the l o n e l i n e s s , t h a t ' s t e r r i b l e . I was alone; I couldn't t e l l anybody. That made me upset, e s p e c i a l l y when I was s i c k . The women who could not t e l l f r i e n d s about the cancer a l s o had d i f f i c u l t y e x p r e s s i n g v u l n e r a b l e emotions and asking f o r emotional support: P: I always considered myself q u i t e s t r o n g , mentally and e m o t i o n a l l y , but I'm l i k e t h a t ; I j u s t hide my f e e l i n g s . I'm a very p r i v a t e person and I don't l i k e to t e l l people my problems; I j u s t l i k e to deal with i t myself. I never l i k e d to bother people with my problems; I'm glad i f somebody comes to me and t e l l s me h i s problems; t h a t ' s ok; I don't l i k e to do i t myself. I don't t h i n k c o u n s e l l o r s could help me because they d i d n ' t go through what I went through, and I b e l i e v e t h a t i f nobody knows what i t i s , then they can't r e a l l y help. I promised myself t h a t i f any of my f r i e n d s have cancer in the f u t u r e ; I'm going to t e l l them and help them. A l l 5 women s t a t e d t h a t they found i t e a s i e r to t a l k about having cancer with i n d i v i d u a l s who had a l s o had cancer: P: There had been a couple of women at work, who are about my age, and they have d i s c o v e r e d t h a t they have cancer, and i t ' s easy f o r me; I ' l l phone them up and t a l k to them and say, "I understand, and i f you ever want to t a l k to somebody, f i n e . " I o f f e r them s t o r i e s of how I f e l t and see how they f e e l . I t ' s d i f f e r e n t , I t h i n k , to have been through i t y o u r s e l f . Part of the women's concern about t e l l i n g o t h e rs about having cancer was the b e l i e f t h a t a d i a g n o s i s of cancer meant c e r t a i n death. T h i s b e l i e f had a negative e f f e c t on women's r e l a t i o n s h i p s with o t h e r s . For example, 1 woman d i d not t e l l her co-workers about the cancer d i a g n o s i s because she d i d n ' t want them to act tense when with her or t r e a t her as i f she was dying: P: It ' s so awkward, people don't know what to say, and they don't know what to do. I j u s t d i d n ' t want to be t r e a t e d d i f f e r e n t l y . I would l i k e people to r e a c t to me in the same way they would have before; a b s o l u t e l y the same way. There are a l o t of people out there who have had cancer; who i f they don't say anything, you don't know, and, a c t u a l l y , a l o t of people would be very s u r p r i s e d to f i n d out that I had anything wrong with me. However, not a l l women f e l t t h i s way about t e l l i n g o t h e rs about cancer. One woman s t a t e d she d e f i n i t e l y was not concerned about r e a c t i o n s from others to cancer: P: I don't mind t a l k i n g about cancer. Whether i t ' s about cancer, in g e n e r a l , or my p a r t i c u l a r s i t u a t i o n ; i t doesn't bother me i n the s l i g h t e s t b i t . Sometimes I f i n d i t o f f e n s i v e i f the questions are coming in the wrong way; you know, " I t ' s none of your b u s i n e s s . " But I don't o f t e n f e e l l i k e t h a t ; i t depends on the s i t u a t i o n and the tone. In summary, the women's d e s c r i p t i o n s showed t h a t metaphorical language commonly used to d e s c r i b e cancer i n f l u e n c e d t h e i r s u b j e c t i v e experiences and o f t e n had s i g n i f i c a n t n e gative e f f e c t s on s e l f - i m a g e . These negative e f f e c t s were f e a r and shame about cancer, emotional f r a g i l i t y , and being i s o l a t e d from o t h e r s . The women's d e s c r i p t i o n s of changes in body s t r u c t u r e and f u n c t i o n due to t h i s r a d i c a l surgery a l s o showed s i g n i f i c a n t e f f e c t s on s e l f - i m a g e . These d e s c r i p t i o n s are d i s c u s s e d under the next sub-heading. 142 2. Changes In Body S t r u c t u r e And Fun c t i o n The changes i n body s t r u c t u r e and f u n c t i o n caused by r a d i c a l surgery f o r g y n e c o l o g i c a l cancer had s e v e r a l s i g n i f i c a n t negative e f f e c t s on the women's se l f - i m a g e . These changes were the loss of f e r t i l i t y , the loss of enjoyable i n t e r c o u r s e , the l o s s of the vagina, body s c a r s , and a urostomy. One woman, f o r example, d e s c r i b e d how the l o s s of f e r t i l i t y removed an important part of her i d e n t i t y : P: I alre a d y have two c h i l d r e n , but the l o s s of my f e r t i l i t y , or my a b i l i t y to have c h i l d r e n , was a t e r r i b l e blow to me. I came from a f a m i l y where mother i s at home and I b e l i e v e t h a t too, I b e l i e v e t h a t ' s very important, and I always wanted t o have c h i l d r e n ; I always wanted to be a mother. And when they took t h a t away, i t was l i k e t a k i n g away pa r t of me. I haven't q u i t e f i g u r e d out how to f i l l t h a t space yet, or how to deal with the lo s s of i t , because i t was more than j u s t removing p a r t s of my body and making me i n f e r t i l e ; i t was much more than t h a t . It was some part of me th a t I never knew u n t i l now how s t r o n g l y I i d e n t i f i e d with i t on some s u b t l e l e v e l t h a t was never acknowledged. It was j u s t t h e r e , and i t was very important to me. I s t i l l see some kind of need f o r th a t p a r t of me. 143 It was deeply a f f e c t e d , but I can't q u i t e b r i n g i t out. It was more than my f e m i n i n i t y or my f e r t i l i t y . It went beyond being f e r t i l e ; i t was me; i t was p a r t of me, some essence i n s i d e of me. T h i s woman a l s o b e l i e v e d t h a t the l o s s of her f e r t i l i t y changed how others p e r c e i v e d her. Since the surgery, she f e l t l e s s valued by o t h e r s : P: Some people do p e r c e i v e me as l a c k i n g something because I can't have more c h i l d r e n . You see something in people's eyes when they know th a t you can't have more c h i l d r e n ; whether i t ' s p i t y or "That's j u s t too bad." When people know that I had a hysterectomy, they c l o s e a door on me; they put me in some l i t t l e category or p l a c e and then shut the door, and t h a t ' s where I stay in t h e i r mind. I f e e l , "I have to prove myself to them," and t h a t ' s s i l l y too; I shouldn't have to prove myself to anyone, except to myself. But I honestly get t h a t f e e l i n g , as though I have to do something e x t r a to make up. T h i s woman's f e e l i n g s about her value as a person, now t h a t she cannot have more c h i l d r e n , have r e s u l t e d from the i n f l u e n c e of lar g e amounts of i n f l u e n t i a l s o c i a l and economic d i s c o u r s e , or formal speech and w r i t i n g , which equate the essence of the female i d e n t i t y with f e r t i l i t y and mothering ( E h r e n r e i c h & E n g l i s h , 1978). Women who are r a i s e d in an environment where t h i s d e s c r i p t i o n of the female i d e n t i t y i s s t r o n g l y b e l i e v e d in and role-modeled w i l l most l i k e l y experience s i g n i f i c a n t negative e f f e c t s on self- i m a g e due to the lo s s of f e r t i l i t y . In a d d i t i o n , from t h i s woman's d e s c r i p t i o n , i t i s evident t h a t negative e f f e c t s on self - i m a g e due to the los s of f e r t i l i t y may occur whether or not a woman already has c h i l d r e n . Furthermore, f o r t h i s woman, the los s of f e r t i l i t y a l s o had a negative e f f e c t on her s e x u a l i t y : P: Half the time when I make love, j u s t the thought of being able to conceive i s such a powerful emotion, or f e e l i n g . That was h a l f the pl e a s u r e of making love. Not t h a t I wanted to be pregnant but j u s t knowing t h a t I could conceive; I could have a baby, th a t was a great p a r t . T h i s p e r s p e c t i v e of female s e x u a l i t y i s l i n k e d to a p a r t i c u l a r l y p e r s u a s i v e h i s t o r i c a l medical d i s c o u r s e about female s e x u a l i t y which, among other t h i n g s , maintained t h a t female s e x u a l i t y was mainly experienced through motherhood: Even as e a r l y as 1857, key c o n t r i b u t o r s to a new medical d i s c o u r s e on female s e x u a l i t y i n s i s t e d t h a t s e x u a l i t y was one of the areas of s o c i a l l i f e t h a t 145 were r e v e a l e d only to medical men in the hope t h a t they may be i n a p o s i t i o n t o suggest some mode of r e l i e f . In the e a r l y years of the twent i e t h century, motherhood not only became c e n t r a l to the c o n s t r u c t i o n of women's i d e n t i t y , i t a l s o began to be acknowledged as a v a l i d s i t e f o r t h e i r s p i r i t u a l , s e n s u a l , and even e r o t i c experiences (Mort, 1987, p. 64). However, i t i s a l s o evident t h a t the los s of f e r t i l i t y d i d not cause negative e f f e c t s on self - i m a g e f o r every woman. Those women who d i d not equate the essence of t h e i r i d e n t i t y or the enjoyment of s e x u a l i t y with f e r t i l i t y experienced a minimal negative e f f e c t on sel f - i m a g e due to the l o s s of f e r t i l i t y : P: I d i d n ' t f e e l l o s t as a person, j u s t a l i t t l e g r i e f in the beginning due to not having c h i l d r e n and going through menopause. I always debated whether or not to have k i d s . "Do I want to have kid s or not?" I always thought i t would be e a s i e r i f the d e c i s i o n was made; not by me, but by some other reason .... 11's c l e a r to me th a t although I don't have the sexual r e p r o d u c t i v e organs anymore, I s t i l l don't f e e l any d i f f e r e n t . I c e r t a i n l y f e e l every b i t as feminine, and I s t i l l have sexual enjoyment. Negative e f f e c t s on self-image due to the los s of f e r t i l i t y , t h e r e f o r e , depended on a woman's b e l i e f s about the female r o l e . However, the loss of f e r t i l i t y had the p o t e n t i a l to cause s i g n i f i c a n t negative e f f e c t s on se l f - i m a g e . The l o s s of enjoyable i n t e r c o u r s e a l s o had the p o t e n t i a l t o cause s i g n i f i c a n t negative e f f e c t s on s e l f -image. For example, 1 woman's r e c o n s t r u c t e d vagina d i d not allow enjoyable i n t e r c o u r s e due to s h r i n k i n g of the va g i n a l g r a f t area and buildup of scar t i s s u e . She de s c r i b e d t h i s l o s s : P: What I loved more than anything was th a t f e e l i n g of the penis e n t e r i n g i n t o the vagina; t h a t f e e l i n g of f u l l n e s s ; I j u s t loved i t ; t h e r e was nothing I l i k e d more about the whole a c t , except t h a t f e e l i n g and the f e e l i n g of e j a c u l a t i o n in my body. There i s pain as w e l l ; there's always some s t i f f n e s s on my p a r t . I haven't completely r e l a x e d i n t o the act; given myself to the act the way I used t o . Even 18 months a f t e r surgery and v a g i n a l r e c o n s t r u c t i o n , due to i n c r e a s i n g pain during i n t e r c o u r s e , t h i s woman f e l t s e x u a l l y abnormal and i n h i b i t e d . She was beginning to d i s t r u s t her body and d i s l i k e her vagina. She b e l i e v e d t h a t not having r e g u l a r sexual i n t e r c o u r s e during the f i r s t 6 months a f t e r surgery caused the s h r i n k i n g of her r e c o n s t r u c t e d vagina, and she blamed h e r s e l f f o r not f i n d i n g a r e g u l a r p a r t n e r : P: These f e e l i n g s now are of b e t r a y a l ; t h a t my body has betrayed me. I'm t i r e d of the problems my new vagina has cr e a t e d f o r me; I don't l i k e having t o deal with i t every day. And great sadness that I'm not f u n c t i o n i n g normally, as a normal woman. As a young woman; I'm not very o l d . I f e e l r e a l l y sad th a t somehow I've been l e f t out i n some way. I don't l i k e my vagina any more and I j u s t n o t i c e d t h a t i n the l a s t couple of weeks. It worries me; I th i n k i t ' s very unhealthy. When I was t r y i n g to analyze i t ; the f e e l i n g I had was, " I t ' s l e t t i n g me down, my vagina i s l e t t i n g me down." For awhile there I thought t h a t e v e r y t h i n g was going to be f i n e ; I could f u n c t i o n normally; make love normally; nothing had r e a l l y changed, and now t h a t ' s not so; my l i f e has been a f f e c t e d . I can't make love l i k e anyone e l s e ; i t hurts too much. I can't j u s t hop i n t o bed with someone; I have to t h i n k , "Well, I need some l u b r i c a n t ; does t h i s guy r e a l l y know what's going on, and how am I going to r e a c t ? W i l l i t be too p a i n f u l ? " Burger (1981), a student nurse who had r a d i c a l surgery f o r va g i n a l cancer, a l s o d e s c r i b e d problems with a c h i e v i n g enjoyable i n t e r c o u r s e which had s i m i l a r negative e f f e c t s on se l f - i m a g e : My f i r s t attempt at i n t e r c o u r s e was a mess. My bladder leaked and i n n e r v a t i o n to my g e n i t a l s was s t i l l not present. Orgasm was nowhere f o r me. Tears and t e a r s could not express my f e e l i n g s of t h i s added l o s s . I began to questi o n why my b o y f r i e n d stayed with me. What was in i t f o r him to have a g i r l f r i e n d who was m u t i l a t e d and d i s f i g u r e d ? Much of th a t was how I pe r c e i v e d myse1f....Fee 1 i n g s t h a t I was l e s s than a whole woman were emerging. I wondered whether anyone ever could ever be a t t r a c t e d to me once they knew about my surgery and cancer. There seemed to be so many b e a u t i f u l women who were healthy and a v a i l a b l e . I f e l t j e a l o u s of women who seemed p e r f e c t and angry t h a t I had to go through t h i s experience (Burger, 1981, pp. 48 & 49). In a d d i t i o n to the l o s s of enjoyable i n t e r c o u r s e , the l o s s of the vagina caused negative e f f e c t s on s e l f -image because i t made the women f e e l t h a t they were s e x u a l l y u n d e s i r a b l e to o t h e r s . For example, 1 woman de s c r i b e d her need t o f e e l s e x u a l l y d e s i r a b l e : P: F i r s t I thought, "My God, I have t h i s r e c o n s t r u c t e d vagina, what i n God's name i s he going to t h i n k ? " And t h a t was the other i s s u e ; what are men going t o th i n k ? And to my s u r p r i s e most of them couldn't have cared l e s s . I was q u i t e s u r p r i s e d about t h a t . In f a c t , I haven't come across anyone who t h i n k s i t ' s the l e a s t b i t weird. That was very n i c e t o f i n d out. I was s u r p r i s e d t h a t I could indulge and f e e l those f e e l i n g s again, of pa s s i o n , and I don't t h i n k I had an orgasm then, but I j u s t remember f e e l i n g so good, l i k e a woman; I f e l t l i k e a d e s i r a b l e woman. That was what I needed at th a t time, j u s t to know t h a t I was d e s i r a b l e , I could f u n c t i o n normally; I could f e e l normally and j u s t p a r t i c i p a t e , and l i v e a normal, a c t i v e sexual l i f e . Once t h a t was over, (her f i r s t sexual experience a f t e r surgery) again I f e l t t h a t need. It was j u s t one experience; what's the next guy going to t h i n k , and i s i t r e a l l y going t o be l i k e t h a t , or was t h a t j u s t a p a r t i c u l a r l y wonderful experience? It was more d i f f i c u l t f o r women who d i d not have a r e g u l a r and s u p p o r t i v e partner to overcome f e e l i n g s of being s e x u a l l y abnormal and u n d e s i r a b l e . The woman who d i d not have a v a g i n a l r e c o n s t r u c t i o n a l s o d e s c r i b e d how the los s of her vagina caused negative e f f e c t s on self - i m a g e although she s t i l l f e l t a t t r a c t i v e and feminine. She was mainly concerned t h a t she would be r e j e c t e d by a f u t u r e partner or that she would not be able to s a t i s f y h i s sexual needs: P: How can you be a s e x u a l l y i n t e r e s t i n g woman and not have a vagina? A vagina i s l i k e your v e h i c l e f o r s e x u a l i t y , f o r sexual i n t e r c o u r s e . I don't even have a s c o o t e r ! So i t ' s h o l d i n g me back. If I have to go the r e s t of my l i f e without having i n t e r c o u r s e ; the way I f e e l r i g h t now, today; i t w i l l be ok, I don't p a r t i c u l a r l y miss i t . But I c e r t a i n l y miss the intimacy of being c l o s e to another person. I c e r t a i n l y f e e l every b i t as feminine. I s t i l l f e e l l i k e a woman; a b s o l u t e l y . I know t h a t , other than the sexual aspects, I have l o t s to o f f e r , and before the surgery, I had l o t s to o f f e r s e x u a l l y , too. But I f e e l not able t o , or not adequate enough, to s t a r t a new r e l a t i o n s h i p t h a t had sexual i n t e r e s t . H e ' l l l ose t h a t sexual a t t r a c t i o n , or somehow h e ' l l look at me d i f f e r e n t l y . W i l l he thin k I'm not so much of a woman? I f e e l t h a t I'd, somehow, be ch e a t i n g him out of something or denying somebody. Why would he be i n t e r e s t e d i n me? It wouldn't be f a i r . And even i f we had a d i s c u s s i o n about i t , and he s a i d t h a t i t was f i n e , I'd s t i l l f e e l t h a t he wasn't g e t t i n g a l l t h a t he should get. Thi s woman was a l s o unable to t e l l p o t e n t i a l p a r t n e r s t h a t she d i d not have a vagina because she f e l t ashamed: P: I don't want them to thin k I'm a freak because I don't have a vagina. I've been a 1 i t t l e r e l u c t a n t in meeting new men because I don't want to t e l l them. I j u s t don't th i n k I want to t e l l somebody t h a t I don't have a vagina. I mean how do you t e l l somebody t h a t , who doesn't know, and doesn't know you? You c e r t a i n l y don't t e l l them on the f i r s t date, but a f t e r a c e r t a i n amount of time when you'd expect there to be some sexual intimacy; w e l l , i t ' s not spontaneous; you've got to s i t down and have t h i s d i s c u s s i o n about i t . I f e e l i t ' s embarrassment. Maybe i t ' s being ashamed of my body fo r not having a vagina; shame l i k e wanting to hide. Yeah, I don't want people t o know. To not have a vagina i s l i k e a man not having a penis . Well, how would he f e e l ? How awful t o have t h a t happen, and then how awful to have everyone know. T h i s woman f i r s t r e v e a l e d the loss of her vagina to a p o t e n t i a l partner almost 2 years a f t e r the r a d i c a l surgery. She found i t extremely d i f f i c u l t to do t h i s : P: He s a i d , "Where was your cancer?" And I s a i d , "This i s a d i f f i c u l t s u b j e c t f o r me to t a l k about, so I ' l l t e l l you l a t e r . " So I had to s o r t of s t a r t and then p u l l back. I f e l t almost t o t a l l y empty; i n s i d e my chest. It was a hollow, almost detached f e e l i n g . I j u s t couldn't d i s c u s s i t ; I couldn't th i n k of any words to use. I thought, "Why do I have to have t h i s c o n v e r s a t i o n ? " And when I f i n a l l y d i d say i t , I was t o t a l l y detached; i t was l i k e I was standing up to give a speech about something. I d i d n ' t c r y ; i t was r e a l l y matter of f a c t . If there was any emotion, i t was r e l i e f ; i t d i d n ' t even matter how he r e a c t e d ; i t was a r e l i e f t h a t I f i n a l l y s a i d i t and got i t over with. She r e a l i z e d t h a t she chose words to d e s c r i b e the surgery which reduced her f e e l i n g s of shame: P: I couldn't say to him t h a t I had cancer of the vagina, and they removed my vagina. I thought about how I would say t h i s , and I decided that I would say t h a t they c 1osed i t o f f . T h i s was on the t h i r d t r y . I s a t on the s i d e of the bed and s a i d , " L i s t e n , before we do t h i s , here's what I have to t e l l you, t h a t I've been a v o i d i n g t e l l i n g you f o r the l a s t few days. I had cancer, I had cancer of the vagina, and I had r a d i a t i o n , and I had surgery, and as part of the surgery, they c l o s e d o f f my vagina, and so we can't make lov e . " F o r t u n a t e l y , her p a r t n e r ' s r e a c t i o n was p o s i t i v e . Then, due to t h i s f i r s t experience of sexual intimacy s i n c e the surgery, she r e a l i z e d t h a t she f e l t s e x u a l l y f r u s t r a t e d without a vagina and began p r e p a r a t i o n s to have v a g i n a l r e c o n s t r u c t i o n : P: He was r e a l l y good about i t . He asked me a couple of q u e s t i o n s , and he d i d say, "You must have been very s t r o n g , " and "How do you f e e l about i t now?"; but i t was no b i g d e a l , and then he f i n a l l y s a i d , "Well, good, now t h a t that i s done, get i n t o bed." I d i d n ' t f e e l shame when we were making love; I f e l t more f r u s t r a t e d . It was f i n e ; I wouldn't want to c a r r y on without a vagina though. I want i t back. I d e f i n i t e l y miss i t now. The f r u s t r a t i o n i s not being able to have g e n i t a l i n t e r c o u r s e . The women's sexual and s o c i a l experiences with others were important i n r e v e r s i n g the surgery's negative e f f e c t s on s e l f - i m a g e . Burger (1981) a l s o d e s c r i b e d t h a t p o s i t i v e experiences with others were necessary to s t a r t f e e l i n g good about h e r s e l f again: When I went to my f i r s t p a rty, four months a f t e r surgery, I was well r e c e i v e d by the people I knew, and they were d e l i g h t e d t h a t I looked so well and was g e t t i n g about. The evening was fun. I danced and laughed. I looked l o v e l y with new c l o t h e s ; I wore pants t o hide my c a t h e t e r and bag. I remember how good i t was to be held and touched, and a reawakening of my sexual s e l f was beginning. I was s t a r t i n g to l i k e myself again and began to f e e l b e t t e r (Burger, 1981, p. 48). Burger (1981) s t a t e d t h a t even negative experiences with others could be h e l p f u l , but only because she had emotional support and c o u n s e l l i n g which helped her to understand these negative experiences and express her fee 1i ngs: I f e l t v u l n e r a b l e and unsure. I d i d n ' t want a s e r i o u s r e l a t i o n s h i p . I wanted to date a v a r i e t y of men f o r experience but a l s o p r o t e c t myself from g e t t i n g r e j e c t e d . With the encouragement and support from the p s y c h i a t r i s t and f r i e n d s , together wS'th the r e t u r n of my sense of humor, I was w i l l i n g to t r y . Some men dated me out of c u r i o s i t y because I had cancer; I had to decide who to t e l l and who not t o t e l l . Some men took me out once and never c a l l e d back. A psychology student and I dated f o r se v e r a l months. He was extremely ambivalent but t r i e d to hide h i s negative f e e l i n g s . He could t a l k with me and be understanding, but he was completely turned o f f to me p h y s i c a l l y . T h i s process was very important. I learned t h a t I could t o l e r a t e r e j e c t i o n , and t h a t some men were i n t e r e s t e d in me d e s p i t e my i l l n e s s or surgery. As I s t a r t e d f e e l i n g more comfortable about myself, I could r e l a t e b e t t e r to men (Burger, 1981, p. 50). Without emotional support and c o u n s e l l i n g , negative experiences with others w i l l l i k e l y i n c r e a s e the surgery's negative e f f e c t s on s e l f - i m a g e . For example, 1 woman, who had a p a r t i a l vaginectomy but d i d not need r e c o n s t r u c t i o n , i n i t i a l l y f e l t unable to f u l f i l l her p a r t n e r ' s sexual needs and considered l e a v i n g her p a r t n e r : P: (Nine months a f t e r surgery) Sometimes I f e e l l i k e k i s s i n g or hugging, but e v e r y t h i n g i s not l i k e b e fore. I f e e l t h a t my husband i s s u f f e r i n g ; he doesn't say anything, but I t h i n k f o r the man i t ' s j u s t not enough. F i f t e e n months a f t e r surgery she f e l t l e s s pain d u r i n g i n t e r c o u r s e and more s e x u a l l y d e s i r a b l e . However, she d e s c r i b e d f e e l i n g ashamed of s c a r s on her body from the surgery and remained concerned about her p a r t n e r ' s sexual s a t i s f a c t i o n . Her husband's lack of p r a i s e f o r her body in c r e a s e d the surgery's negative e f f e c t s on s e l f - i m a g e : P: That's why I f e e l happier now. Before I t h i n k t h a t maybe my husband w i l l leave, but now I have a l i t t l e hope. Sometimes I f e e l shame with my husband. I don't know why. I guess he f e e l s s o r r y f o r me. I don't want him to see the s w e l l i n g . He's never seen my s c a r . He doesn't want to see i t e i t h e r . He wants the l i g h t s on, but I don't because I don't want to show my body. Before, I showed my body, but now I'm embarrassed. I can't hide my sc a r ; i t ' s too long. And the s w e l l i n g looks ugly. I sometimes see i t i n the m i r r o r when I take a shower, and I can't b e l i e v e i t . I don't f e e l l i k e a sexy woman. Not now. Maybe before. I guess t h a t my husband t h i n k s I s t i l l am. Once he s a i d , before, t h a t I was the s e x i e s t woman because I enjoyed t h a t so much. I thin k my husband s t i l l d e s i r e s me. Maybe i f he had a chance he would look f o r another woman. He l i k e s me, but the scars and ev e r y t h i n g ; he doesn't l i k e me as much. We don't t a l k about i t . We can't change i t now. Nobody can change i t . My husband never t e l l s me I'm b e a u t i f u l . He used t o , but i t ' s gone now. Leg and abdominal s c a r s from the surgery a l s o caused negative e f f e c t s on se l f - i m a g e . The va g i n a l r e c o n s t r u c t i o n r e q u i r e d the removal of a large p i e c e of donor s k i n from near the g r o i n to the knee. The women f e l t uncomfortable i n p u b l i c and d i s l i k e d t h e i r s c a r s : P: I l i k e wearing s h o r t s , and I don't want to be looked at. There are l o t s of people on the beach t h a t have b i g s c a r s , but t h i s i s something d i f f e r e n t ; I've never seen i t before. You can't say you've had an a c c i d e n t because i t has such a d e f i n e d shape. It s t i l l doesn't look very good. I was t o l d in a year t h a t e v e r y t h i n g w i l l disappear, but i t s t i l l doesn't look very good. However, p o s i t i v e experiences with others helped some women g r a d u a l l y accept and even l i k e t h e i r s c a r s : P: My scar doesn't look t h a t bad. I've s t a r t e d to l i k e i t now. I've s t a r t e d to l i k e my body a l o t more s i n c e I t a l k e d to you l a s t . Even before I met t h i s f e l l o w , but even more s i n c e I met him. I even went to a nude beach and I showed my scar to everybody. I t ' s s o r t of white. My g i r l f i r e n d d i d n ' t even say, "Oh, look, t h e r e ' s your s c a r . " It' s been almost 2 years now, and I'm used to l o o k i n g at my body with t h i s scar on i t . It seems n a t u r a l to me now to have t h i s s c a r . I thought i t looked r e a l l y bad b e f o r e . The process of a c c e p t i n g changes in body s t r u c t u r e and f u n c t i o n due to surgery i s known to be necessary f o r emotional h e a l t h and sexual s a t i s f a c t i o n : Women who develop body image problems a f t e r mastectomy surgery commonly avoid looking at themselves whenever they dress, undress, bathe, or take a shower. There i s a strong c o r r e l a t i o n between body image problems and the development of a f f e c t i v e d i s o r d e r s and sexual problems (Maguire, 1985, p. 101). One woman in the study a l s o had her bladder removed. The presence of an urostomy bud and a bag to c o l l e c t u r i n e on her abdomen had negative e f f e c t s on self-i m a g e in ways which were s i m i l a r to the loss of the vagina and body s c a r s . A f t e r 4 years, t h i s woman was s t i l l ashamed of her body and r e l u c t a n t to t e l l o t h e rs about the urostomy. She d e s c r i b e d a negative experience with her young granddaughter which increased the surgery's negative e f f e c t s on sel f - i m a g e : P: W e l l , I f e e l l i k e a fr e a k ; t h a t ' s how I f e e l now, l i k e a fr e a k ; I'm not complete; I'm not whole. Because of the urostomy t h e r e . I never seem to f o r g e t t h a t i t ' s t h e r e . How can I go swimming? Th i s new body and what t o do with i t ; those hoses, and t h a t equipment, and you f e e l l i k e a f r e a k . And the bother with the bag and the a c c i d e n t s . My fa m i l y f e l t s o r r y f o r me. My daughter has seen the urostomy; not my son. That was ok. The only t h i n g was the l i t t l e one, the 2 year o l d ; she caught me one time in the bathroom. I d i d n ' t c l o s e the door, and I was alre a d y emptying the bag, and she looked at me, and now everytime I go to the t o i l e t she wants to go with me. She knows I don't s i t down, and she's too young to understand i t . It h o r r i f i e d her; you should have seen the look on her face . She looked up at me, and at th a t bag; i t was a very strange f e e l i n g on her face, her eyes were j u s t b u l g i n g . I f e l t uncomfortable; I d i d n ' t want her to be t h e r e . Now she watches me l i k e a hawk and goes with me whenever I go. However, not a l l changes in body s t r u c t u r e and f u n c t i o n due to t h i s r a d i c a l surgery had negative e f f e c t s on s e l f - i m a g e . For example, t h i s woman a l s o s t a t e d t h a t not having a vagina had l i t t l e e f f e c t on her sel f - i m a g e : P: No, not th a t important (removal of the va g i n a ) . It would be i f I'd had a d i f f e r e n t husband; a woman of my age, but not what I had. If I would have been a sexy, oversexed woman; th a t would have bothered me, but I never was. Thi s woman's comment, th a t a "sexy" woman was, t h e r e f o r e , an "oversexed" woman, i s an example of b e l i e f s about female s e x u a l i t y which have h i s t o r i c a l l y r epressed 160 female sexual experiences and needs: The m a j o r i t y of women should not be t r o u b l e d with sexual f e e l i n g s of any kind. Male s e x u a l i t y , however, i s an i n s t i n c t u a l f o r c e ; an e s s e n t i a l a t t r i b u t e of m a s c u l i n i t y ; a power and a p r i v i l e g e which giv e s man h i s d i g n i t y ; h i s ch a r a c t e r as head and r u l e r (Mort, 1987, p. 68). In the 19th century, p u b l i c a t i o n s by i n f l u e n t i a l p h y s i c i a n s and p o l i t i c i a n s maintained t h a t female sexual f e e l i n g s were abnormal. These p u b l i c a t i o n s were w r i t t e n and widely d i s t r i b u t e d to j u s t i f y enforcement of the Contagious Disease Acts which allowed p o l i c e to j a i l and "re-educate" p r o s t i t u t e s who were viewed as s e x u a l l y abnormal. Furthermore, s i n c e sexual f e e l i n g s in males were viewed as normal, the men who used the s e r v i c e s of p r o s t i t u t e s d i d not r e q u i r e r e - e d u c a t i n g and were not j a i 1 e d . These r e p r e s s i v e 19th century b e l i e f s s t i l l i n h i b i t female s e x u a l i t y and cause some women to f e e l t h a t t h e i r sexual needs are abnormal and immoral. It has been recog n i z e d t h a t h e a l t h p r o f e s s i o n a l s must help women f e e l t h a t i t i s ac c e p t a b l e t o d i s c u s s sexual f e e l i n g s and needs a f t e r r a d i c a l surgery f o r g y n e c o l o g i c a l cancer (Stevenson, 1986). Changes i n body s t r u c t u r e and f u n c t i o n due to t h i s r a d i c a l surgery a l s o caused a few p o s i t i v e e f f e c t s on sel f - i m a g e . For example, the c e s s a t i o n of a c h r o n i c v a g i n a l d i s c h a r g e had a p o s i t i v e e f f e c t : P: To t e l l you the t r u t h , when they d i d the surgery i t was almost a r e l i e f , because at l e a s t I got r i d of t h i s i n f e c t e d p o r t i o n . I had gone from A p r i l t o December with t h i s t e r r i b l e i n f e c t i o n so I was wearing these heavy pads a l l the time. Even though I wasn't p h y s i c a l l y back to normal, at l e a s t I di d n ' t have to wear these heavy pads and c o n s t a n t l y have t h i s awful d r i p , l i k e t h i s constant reminder t h a t something was wrong. Other p o s i t i v e e f f e c t s on self - i m a g e were due to the unusual circumstance t h a t one woman had been born with a c o n g e n i t a l l y small vagina which had always prevented her from e n j o y i n g i n t e r c o u r s e . T h e r e f o r e , f o r t h i s woman, having r a d i c a l surgery which r e q u i r e d v a g i n a l r e c o n s t r u c t i o n caused p o s i t i v e e f f e c t s on s e l f -image. She d e s c r i b e d these p o s i t i v e e f f e c t s as being able t o enjoy i n t e r c o u r s e and a new f e e l i n g of s e l f -c o nfidence s i n c e she now had a normal-sized vagina: P: Before i t was d i f f e r e n t because i t was a small vagina and i t was always p a i n f u l . I'm r e a l l y g lad I had the r e c o n s t r u c t i o n done because i t ' s much big g e r . At l e a s t I have a good s i z e of a vagina, and I'm enjo y i n g sex b e t t e r than I could b e f o r e . I think i t changed me q u i t e a b i t because before I was always a f r a i d of sex; I knew there was going to be pa i n , and I d i d n ' t r e a l l y enjoy i t . And now i t ' s completely d i f f e r e n t ; I can enjoy i t , and when I don't have pain , then i t ' s great. I'm more s e l f -c o n f i d e n t because I am able to have normal sex. Before I wasn't complete. T h i s woman d e s c r i b e d how she r e g u l a r l y examined her r e c o n s t r u c t e d vagina with a m i r r o r in order t o observe the s k i n g r a f t changes. Her a b i l i t y to do t h i s was due to her experience as a midwife. These o b s e r v a t i o n s of the r e c o n s t r u c t e d vagina helped her to accept her new vag i na: P: I look to see what the c o l o r looks l i k e , with a m i r r o r as f a r as I can see i t . It seems to be changing, but i t doesn't look l i k e a normal vagina to me yet, but who knows, maybe i t w i l l . I t ' s kind of squished together; l o t s of f o l d s ; i t doesn't look normal. The s i d e s and bottom are s o f t , though, and the doctors t o l d me t h a t , a f t e r a few years, I won't even know I have a d i f f e r e n t vagina. It' s s t i l l kind of purple; b l u i s h ; not r e a l l y t h a t l i g h t pink. I t h i n k i t i s s h o r t e r , too, than when I had the mold i n , but i t doesn't c r e a t e any prob1 ems. Burger (1981) a l s o d e s c r i b e d t h a t examining her r e c o n s t r u c t e d vagina was an important part of g r a d u a l l y a c c e p t i n g and l i k i n g t h i s change in body s t r u c t u r e : I used a hand m i r r o r to look at my g e n i t a l s and was con t i n u o u s l y reassured to see t h a t I looked "about normal." Along with the m i r r o r , I used a f l a s h l i g h t to look i n t o the vagina; with the g l a s s t e s t tube in pl a c e I could see the changes in the v a g i n a l w a l l s . Ridges, as i n a normal vagina, were developing (Burger, 1981, p. 48). In summary, the changes i n body s t r u c t u r e and f u n c t i o n which caused s e v e r a l s i g n i f i c a n t negative e f f e c t s on se l f - i m a g e were the l o s s of f e r t i l i t y , the loss of the vagina, the los s of enjoyable i n t e r c o u r s e , body s c a r s , and a urostomy. The negative e f f e c t s on sel f - i m a g e due to these body changes were a loss of i d e n t i t y , a loss of s e x u a l i t y , f e e l i n g s of being s e x u a l l y abnormal and u n d e s i r a b l e , shame and d i s l i k e f o r one's body, and i s o l a t i o n from o t h e r s . The women d e s c r i b e d the importance of having p o s i t i v e experiences with others in order to rev e r s e the surgery's negative e f f e c t s on se l f - i m a g e . P r o f e s s i o n a l emotional support and c o u n s e l l i n g were necessary, e s p e c i a l l y when these women had negative experiences with o t h e r s . The l a s t sub-heading in the t h i r d major category c o n t a i n s the women's d e s c r i p t i o n s of t h e i r p e r c e p t i o n s e l f - w o r t h a f t e r r a d i c a l surgery f o r g y n e c o l o g i c a l cancer. 165 3. P e r c e p t i o n of Self-Worth The p e r c e p t i o n of s e l f - w o r t h v a r i e s during the l i f e - s p a n and can be enhanced or i n h i b i t e d by i n t e r a c t i o n s with others and by an i n d i v i d u a l ' s mental, p h y s i c a l , and emotional f u n c t i o n i n g (Sanford & Donovan, 1985). A s i g n i f i c a n t f i n d i n g i n t h i s study i s th a t the women's p e r c e p t i o n of s e l f - w o r t h was enhanced due to s u r v i v i n g r a d i c a l surgery f o r g y n e c o l o g i c a l cancer. The women d e s c r i b e d f e e l i n g proud and stro n g due to s u r v i v i n g cancer, r e c o v e r i n g p h y s i c a l l y from the surgery, and t o l e r a t i n g severe p a i n . The women a l s o f e l t s e l f - d e t e r m i n a t i o n and p s y c h o l o g i c a l growth due to t h i s surgery. For example, 1 woman d e s c r i b e d f e e l i n g s of p r i d e and s t r e n g t h 1 year a f t e r her r a d i c a l surgery and 6 months a f t e r f u r t h e r surgery t o remove a benign o v a r i a n c y s t which she and the p h y s i c i a n s had at f i r s t suspected to be a spread of the cancer: P: Just d e a l i n g with the pain part of i t made me proud of myself because no matter how bad i t was, I cou l d r i s e above i t . I was proud of myself; that I was str o n g ; I was courageous; I d i d n ' t make a fuss about i t , even though there r e a l l y was no other way tha t I should have been. I guess the best t h i n g of a l l i s that i t ' s improved my s e l f - i m a g e . I'm much happier with myself. I j u s t had to become another person; I had to push myself; push my q u a l i t i e s . I had to become b e t t e r , s t r o n g e r , more s e l f -s u f f i c i e n t , more e f f i c i e n t . J u s t having gone through the experience, I've l i v e d more and done more than most people w i l l ever have to do, or deal with. And, a f t e r the removal of the benign c y s t , I f e l t some l e v e l of peace t h a t I hadn't f e l t b e f o r e . I r e a l i z e d t h a t no matter what happened, whether I never had cancer again, or whether i t d i d come back; I would be able to deal with i t at the time; however hard t h a t may be. I r e a l i z e d t h a t I had gone beyond the phase of f e a r of dying, and I had accepted something on a much deeper l e v e l . I t h i n k I have r e a l i z e d a l o t of good out of the s i t u a t i o n . Health p r o f e s s i o n a l s may mistakenly assume from t h i s woman's enhanced p e r c e p t i o n of s e l f - w o r t h t h a t she had e m o t i o n a l l y recovered from r a d i c a l surgery f o r g y n e c o l o g i c a l cancer. Yet, during the next 6 months, almost 2 years a f t e r the r a d i c a l surgery, her p e r c e p t i o n of s e l f - w o r t h became s i g n i f i c a n t l y i n h i b i t e d due to g r i e v i n g f o r her l o s s e s and intense disappointment about v a g i n a l f u n c t i o n i n g a f t e r r e c o n s t r u c t i o n . During her second i n t e r v i e w , s i x months l a t e r , she d e s c r i b e d having i n c r e a s i n g pain from her 1 6 7 r e c o n s t r u c t e d vagina which prevented enjoyable i n t e r c o u r s e . She d i d not have a r e g u l a r p a r t n e r , had found i t was impossible to become independent or cope with a f u l l - t i m e education program, and was now ex p e r i e n c i n g an i n c r e a s e i n emotional v u l n e r a b i l i t y . Her d e s c r i p t i o n s show t h a t she was beginning to f u l l y g r i e v e f o r the major lo s s e s caused by t h i s r a d i c a l surgery. A l l of these f a c t o r s i n h i b i t e d her p e r c e p t i o n of s e l f - w o r t h , and her a b i l i t y f o r s e l f - d e t e r m i n a t i o n and p s y c h o l o g i c a l growth was reduced at t h i s time: R: Do you give y o u r s e l f c r e d i t f o r what you went through? P: Yeah, though t h a t ' s being undermined r i g h t now. I'm saying, "Well, so what, anyone could do i t . " Or, "Well, I've done i t but where does i t have me now? I s t i l l can't go out and f u n c t i o n l i k e a normal person because everytime I do t r y to f u n c t i o n l i k e a normal person; I s t a r t f a l l i n g a p a r t , which means I'm not a normal person." I s t i l l have to deal with the e f f e c t s of the surgery on my l i f e ; t h a t I'm not as str o n g as I thin k I am. The a f t e r - e f f e c t s of the surgery and having t o overcome so much p h y s i c a l l y and e m o t i o n a l l y . Just when I thin k I've overcome i t ; I've d e a l t with i t ; i t j u s t a l l s t a r t s to the s u r f a c e again, and I see tha t I haven't d e a l t with i t . I haven't c r i e d , and I haven't r e a l l y g r i e v e d . My dog was k i l l e d a couple months ago, and I held h i s dead body in my arms, and I j u s t sobbed; I c r i e d l i k e I haven't c r i e d . I don't remember c r y i n g l i k e t h a t . I thought at the time, " T h i s i s something t h a t ' s j u s t coming; I'm not j u s t c r y i n g because the dog was dead." I could f e e l at th a t p o i n t something was o b v i o u s l y coming out, and I l e t i t come out, and then I j u s t r e p r e s s e d i t again. But I don't thi n k I've c r i e d s i n c e . It i s known t h a t women with cancer who develop a major depression o f t e n have g r e a t e r f u n c t i o n a l s t a t u s impairment and gr e a t e r p a i n . Furthermore, the r i s k of s u i c i d e seems to i n c r e a s e 6 months t o 5 years a f t e r a cancer d i a g n o s i s (Saunders and Valente, 1988). P s y c h i a t r i s t s maintain t h a t b a r r i e r s to g r i e v i n g a l o s s can cause a major de p r e s s i o n , and a l s o t h a t d i s t u r b a n c e in bereavement appears to occur f r e q u e n t l y i n women who experience g y n e c o l o g i c a l surgery (American P s y c h i a t r i c A s s o c i a t i o n , 1980). A second woman a l s o d e s c r i b e d f e e l i n g undermined s e l f - w o r t h 12 months a f t e r the r a d i c a l surgery. Her intens e f e a r t h a t the cancer would r e t u r n and her suppression of g r i e f were major f a c t o r s : P: I had a f e e l i n g t h a t I went through a t h i n g t h a t not too many people go through, and I came out of i t f i n e . I f e l t l i k e I had achieved t h i n g s t h a t others have not. A f t e r the surgery, when I was f e e l i n g f i n e , I was r e a l l y happy with myself, but a f t e r awhile, e v e r y t h i n g came back to the normal d a i l y l i f e , and I d i d n ' t t h i n k about t h a t . Then I thought, "What about my nerves? Are they any b e t t e r ? Maybe I came through i t f i n e , but my nerves are not b e t t e r . " I t ' s l i k e I can't plan f o r the f u t u r e . What i f there i s something r e a l l y wrong? Why should I go through the work of g e t t i n g to a goal when I may not be here to enjoy i t ? When I thi n k t h a t I'm going to be dying? My doctor s a i d the other day, "Well, you went through a l o t , " but I don't f e e l i t . I j u s t wish t h a t t h a t f e e l i n g of f e a r of cancer would go away. The only t h i n g t h a t I'm concerned t h a t I ' l l never be able to f o r g e t t h a t the s c a r e of cancer i s t h e r e , and I ' l l have to deal with i t a l l my l i f e . I t ' s when anything happens in my body; the f e a r always comes back when something h u r t s . I t ' s scarey and I can't t e l l anyone t h a t I have t h i s f e e l i n g of f e a r . I t ' s d i f f e r e n t than breaking your l e g ; t h e r e i s no c h o i c e ; cancer i s th e r e and comes out whenever i t wants. I b e l i e v e t h e r e i s a program, and there i s nothing I can do about i t . T h i s woman needed to explore and express intense f e e l i n g s of fe a r which r e l a t e d to her traumatic experience with a f r i e n d who died 1 year a f t e r being diagnosed with cancer. T h i s was necessary to reduce her fe a r which i n h i b i t e d p e r c e p t i o n of s e l f - w o r t h . If she could not r e s o l v e t h i s f e a r , she would not be able to develop s e l f - d e t e r m i n a t i o n and p s y c h o l o g i c a l growth but would continue to f e e l p a s s i v e and f a t a l i s t i c about her 1 i f e . Some h e a l t h p r o f e s s i o n a l s f a i l to expl o r e the source of d i s t r e s s i n g f e e l i n g s about cancer but have concluded that i n d i v i d u a l s who do not p s y c h o l o g i c a l l y recover from having cancer are simply seeking a t t e n t i o n : Some cancer p a t i e n t s f a i l t o recover p s y c h o l o g i c a l l y and s o c i a l l y d e s p i t e being f r e e of dis e a s e a f t e r treatment. In a p r o p o r t i o n , at l e a s t , t h i s i s due to i l l n e s s behavior. P a t i e n t s cannot b e l i e v e t h a t they are f r e e of t h e i r cancer and have learned t h a t they get more a t t e n t i o n and concern through "being i l l " , r a t h e r than " w e l l " (Maguire, 1985, p. 101). T h i s p a r t i c u l a r e x p l a n a t i o n of emotional d i s t r e s s due to having cancer i s an example of a common judgemental a t t i t u d e which l a b e l s e m o t i o n a l l y d i s t r e s s e d p a t i e n t s as m a n i p u l a t i v e p e r s o n a l i t i e s . Such an a t t i t u d e does not take i n t o account that the healthy i n t e g r a t i o n of a major lo s s i n t o an i n d i v i d u a l ' s l i f e u s u a l l y takes from 2 to 4 years ( W h i t f i e l d , 1987). Furthermore, the g r i e v i n g process u s u a l l y begins s e v e r a l months a f t e r a sudden major lo s s due to the common i n i t i a l r e a c t i o n s of shock and d e n i a l . Acute g r i e f tends to f o l l o w an approximate course, beginning with shock, a n x i e t y , d e n i a l , and anger, p r o g r e s s i n g through pain and d e s p a i r , and ending on e i t h e r a p o s i t i v e or a negative note, depending on the c o n d i t i o n s around the loss and the person's o p p o r t u n i t y to g r i e v e i t (Bowlby, 1980). Radi c a l surgery f o r g y n e c o l o g i c a l cancer caused s e v e r a l sudden major l o s s e s . These were the loss of f e r t i l i t y and loss e s i n sexual enjoyment, sexual s e l f -image, body-image, s e c u r i t y , and the a b l i l i t y to work. In a d d i t i o n , s i n c e the women were confronted by these major los s e s at d i f f e r e n t times a f t e r the surgery, the g r i e v i n g process was not p r e d i c t a b l e , although i t appeared t o be most intense between 1 and 2 years a f t e r surgery. Although g r i e v i n g was necessary f o r the women to i n t e g r a t e each l o s s and r e g a i n p s y c h o l o g i c a l w e l l - b e i n g , the behaviors and f e e l i n g s of g r i e v i n g a l s o c r e a t e d emotional and mental t u r m o i l which i n h i b i t e d the women's pe r c e p t i o n of s e l f - w o r t h . For example, 1 woman de s c r i b e d how shock and anx i e t y a f t e r surgery a f f e c t e d her mental f u n c t i o n i n g : P: My mind wouldn't stop s p i n n i n g f o r months and months. I couldn't s l e e p at night because my mind never shut o f f . I couldn't keep a steady thought in my mind. I was moving so f a s t i n s i d e , and th a t was so d i f f i c u l t to l i v e with; I j u s t couldn't t u r n i t o f f . Simos (1979) developed a framework which e x p l a i n s the process of g r i e v i n g f o r a major l o s s . T h i s framework shows t h a t the f i r s t stage of g r i e v i n g c o n s i s t s of shock, a n x i e t y , and d e n i a l which progresses, over s e v e r a l months, t o the second stage of pain and de s p a i r . A t h i r d stage i s l a b e l e d the f a v o r a b l e or unfavorable i n t e g r a t i o n of the los s and g r i e f i n t o the i n d i v i d u a l ' s l i f e . The thr e e stages of the g r i e v i n g process can l a s t s e v e r a l months and o v e r l a p of the stages a l s o occurs. A l i s t of acute g r i e f behaviors and f e e l i n g s i n Simos' (1979) second stage of g r i e v i n g are inc l u d e d here because these s p e c i f i c behaviors and f e e l i n g s were o f t e n d e s c r i b e d by the women who experienced r a d i c a l surgery f o r g y n e c o l o g i c a l cancer: 1. P h y s i c a l and p s y c h o l o g i c a l pain and d i s t r e s s . 2. C o n t r a d i c t o r y p u l l s , emotions, and impulses. 3 . Searching behavior composed o f : - preoccupation with the l o s s . - a compulsion t o r e t r i e v e the l o s s . - aimless wandering and r e s t l e s s n e s s . - a sense of w a i t i n g f o r something t o happen. - a f e e l i n g of being l o s t . - a f e e l i n g of not knowing what t o do. - i n a b i l i t y to i n i t i a t e any a c t i v i t y . - a f e e l i n g t h a t time i s suspended. - a f e e l i n g of d i s o r g a n i z a t i o n . - a f e e l i n g t h a t l i f e can't be worthwhile again. - c o n f u s i o n and f e e l i n g s of u n r e a l i t y . - f e a r t h a t a l l the above i n d i c a t e mental i l l n e s s . 4. C r y i n g , anger, g u i l t , shame. 5. Return to behaviors and f e e l i n g s connected with a previous major l o s s . 6. H e l p l e s s n e s s and de p r e s s i o n , hopelessness (adapted from Simos, 1979). The women's d e s c r i p t i o n s showed t h a t these behaviors and f e e l i n g s i n h i b i t e d the p e r c e p t i o n of s e l f -worth and decreased t h e i r a b i l i t y f o r s e l f - d e t e r m i n a t i o n and p s y c h o l o g i c a l growth: P: I c r i e d and c r i e d , and I had a headache so bad I wanted to p u l l my h a i r or h i t my head to get r i d of i t . Sometimes I f e l t l i k e I was t u r n i n g crazy. I thought, "Why am I l i k e t h i s ? " Every time they made me have hope and then the hope was gone. P: Cry an awful l o t , t h a t ' s what you do. Both t h i n g s happened to me; got cut down with an axe; my job and my h e a l t h . It was about l o s i n g t h a t . I do f e e l as i f I cou l d explode some times. E v e r y t h i n g gets mixed up i n t h e r e . I used to cry an awful l o t a f t e r my b i g surgery. T h i s woman, who experienced another major u n r e l a t e d l o s s , in a d d i t i o n to the surgery's l o s s e s , d e s c r i b e d her g r e a t l y i n h i b i t e d p e r c e p t i o n of s e l f - w o r t h even 4 years a f t e r r a d i c a l surgery: R: Do you f e e l ready t o die? P: Yeah, a l o t more than l i v i n g ; ever s i n c e the cancer. You don't know what's going to be ahead, and i n my case, my f a v o r i t e n i e c e t h a t d i e d . I used to go to v i s i t her every second day, and she s u f f e r e d , oh God, and I had to watch t h a t . And I f e l t g u i l t y f o r being a l i v e . I'm so much o l d e r . Why aren't I dead and l e t her l i v e ? T h e r e f o r e , although some women i n i t i a l l y e xperienced enhanced p e r c e p t i o n of s e l f - w o r t h due to s u r v i v i n g the cancer and r a d i c a l surgery, they a l s o experienced an i n h i b i t e d p e r c e p t i o n of s e l f - w o r t h s e v e r a l months a f t e r surgery due to the g r i e v i n g process. The length of time of the three stages of g r i e v i n g depends on the magnitude of the l o s s , a b i l i t y and op p o r t u n i t y to g r i e v e , past and concurrent l o s s e s , and access to emotional support f o r grief-work ( W h i t f i e l d , 1987). From the women's d e s c r i p t i o n s , i t was evident t h a t f a m i l y members, f r i e n d s , or even p r o f e s s i o n a l c o u n s e l l e r s d i d not provide adequate emotional support f o r the g r i e v i n g process: P: I'm very emotional, and I have a problem expressing my f e e l i n g s even to c l o s e people. I thi n k i t ' s because I'm q u i t e shy, and I j u s t don't know how to express my f e e l i n g s or how to t e l l people about them. I t h i n k i f I t o l d my f a m i l y these f e e l i n g s they would thi n k l e s s of me. They might th i n k I was making i t a l l up, and I was j u s t s a ying i t t o make them f e e l s o r r y f o r me. P: I used to be f u r i o u s because, whenever I d i d t a l k t o c o u n s e l l o r s , they would say, "Well, you alre a d y have two c h i l d r e n . " As f a r as I'm concerned, even i f I n e v e r h a d m o r e c h i l d r e n ; t h a t ' s n o t t h e p o i n t . T h e p o i n t i s t h a t I c a n ' t ; t h a t d e c i s i o n h a s b e e n t a k e n f r o m me. My f a m i l y d i d n ' t s e e why i t was s o u p s e t t i n g t o me t h a t I h a d a h y s t e r e c t o m y . B u t , b e c a u s e i t i s a b i g d e a l t o me, i t s h o u l d b e i m p o r t a n t . I w i s h t h e y w o u l d g i v e me c r e d i t f o r s i n c e r e f e e l i n g s b e c a u s e s o o f t e n t h e r e a c t i o n I g e t i s , "Oh, s h e ' s h a d c a n c e r , s o d o n ' t m i n d h e r , s h e ' s a l i t t l e e m o t i o n a l . " I t h i n k n o o n e e v e r g a v e me c r e d i t f o r t h e d e p t h o f w h a t I was f e e l i n g . Why h a s n o o n e s a i d t o me, "How a r e y o u d o i n g e m o t i o n a l l y ? " o r "How a r e y o u t r y i n g t o d e a l w i t h h a v i n g a v a g i n a l r e c o n s t r u c t i o n , a n d h a v i n g a h y s t e r e c t o m y , a n d h a v i n g c a n c e r ? " I was t h e o n e who h a d t o s a y , " H e y , who d o I t a l k t o ? " A n d y o u w e r e t h e f i r s t p e r s o n who a p p r o a c h e d me o n a v o l u n t e e r b a s i s . I t i s k n o w n t h a t t h e p e r c e p t i o n o f s e l f - w o r t h i s e n h a n c e d w h e n a m a j o r l o s s i s f a v o r a b l y i n t e g r a t e d a n d a new i d e n t i t y i s r e o r g a n i z e d w i t h r e s t i t u t i o n f o r t h e l o s s ( S i m o s , 1 9 7 9 ) . T h e r e f o r e , t h e a b i l i t y f o r s e l f -d e t e r m i n a t i o n a n d p s y c h o l o g i c a l g r o w t h i n c r e a s e s w h e n t h e r e i s a f a v o r a b l e i n t e g r a t i o n o f t h e l o s s . F o r e x a m p l e , o n e woman d e s c r i b e d p a r t o f t h i s g r a d u a l p r o c e s s o f i n t e g r a t i n g t h e l o s s o f h e r f e r t i l i t y 177 and creat ing a new, and acceptable, ident i ty which did not include the a b i l i t y to have c h i l d r e n : P: That f ee l ing has passed to some extent. I t 's s t i l l there a l i t t l e b i t ; I don't think I've dealt with the loss of f e r t i l i t y completely. I don't feel that loss of ident i ty so much anymore; I feel better about me. I feel that I'm s t i l l a whole person; I'm s t i l l a complete person; I just don't have that part of me anymore, but there are sides to me. I haven't explored those other parts yet , which is maybe why I feel a l i t t l e uncer ta in , but I don't feel the loss as much. Yet, at the same time that th is woman was integrat ing the loss of her f e r t i l i t y , she was also in the acute stage of gr iev ing for the loss of enjoyable in tercourse. Her reconstructed vagina s t i l l caused severe pain during intercourse even 18 months af ter surgery. She was present ly confront ing a major loss in her sexual se l f - image, s ince she now rea l i zed that the reconstructed vagina was not meeting her expectat ions. Her behaviors and fee l ings showed a reduction in s e l f -determination and psychological growth due to gr iev ing for t h i s major loss : P: When I went back to school in September, I f e l l apart . I thought I was strong as a horse but I w a s n ' t ; i t s h a t t e r e d e v e r y t h i n g . G o i n g t o s c h o o l ; p h y s i c a l l y and e m o t i o n a l l y , I c o u l d n ' t t o l e r a t e t h e work l o a d on me. F a t i g u e o v e r w h e l m e d me l i k e a c l o u d , and I had t o d r o p two o f my c o u r s e s . I t h o u g h t , " W e l l , I'm b e t t e r now, i t ' s a l m o s t 2 y e a r s ago t h a t t h i s a l l h a p p e n e d t o me, I'm f i n e , " and y e t I'm n o t . E v e r y t i m e I seem t o c h a l l e n g e m y s e l f , o r e x t e n d m y s e l f , I g e t s l a p p e d i n t h e f a c e . I j u s t h a v e t h a t f e e l i n g t h a t n a t u r e i s j u s t s l a p p i n g me down and s a y i n g , " Y o u c a n ' t p r o g r e s s t h i s q u i c k l y . " S i m o s (1979 ) s t a t e d t h a t r e c a l l i n g l o s s e s w i t h p o i g n a n c y and c a r i n g i n d i c a t e d t h a t a f a v o r a b l e i n t e g r a t i o n o f l o s s h a s b e e n a c h i e v e d . T h i s woman, h o w e v e r , s t i l l r e c a l l e d h e r l o s s e s w i t h p a i n and s o r r o w : P: T h e o t h e r day I saw a y o u n g c o u p l e who were i n l o v e , s o y o u n g , s o u n t o u c h e d by l i f e . And I s t a r t e d t o c r y , t h a t ' s when t h i s f e e l i n g o f s a d n e s s s t a r t e d t o come up i n me. I l o o k e d a t t h e m , and I w a n t e d t o be t h a t way a g a i n ; n o t h a v i n g b e e n h u r t y e t , o r s c a r r e d , o r t r a u m a t i z e d i n any way . She a l s o d e s c r i b e d f e e l i n g e x t r e m e l y v u l n e r a b l e t o o t h e r s e p a r a t i o n s and l o s s e s w h i c h i n d i c a t e d a c u t e g r i e f ( S i m o s , 1 9 7 9 ) . She r e a l i z e d t h a t h e r p e r c e p t i o n o f s e l f - w o r t h was e a s i l y damaged by r e j e c t i o n f r o m o t h e r s at t h i s time: P: When a man l e f t me r e c e n t l y , even though I wasn't that attached to him; when he acted so c o l d , i t a f f e c t e d me profoundly, as i f I was no consequence and he could j u s t chuck me away. I'm much more f r a g i l e i n my emotions because I j u s t f e l t squished under h i s h e e l . Things have j u s t changed, e v e r y t h i n g i s d i f f e r e n t . T h e r e f o r e , even 18 months a f t e r the r a d i c a l surgery, due to acute g r i e f , she was c l e a r l y e x p e r i e n c i n g behaviors and f e e l i n g s which i n h i b i t e d her pe r c e p t i o n of s e l f - w o r t h and reduced s e l f - d e t e r m i n a t i o n and p s y c h o l o g i c a l growth: P: The l a s t few weeks I've been f e e l i n g r e a l l y shaky again; f e e l i n g doubts, unwanted f e e l i n g s and emotions. I have l i t t l e p a t i e n c e now. My t e t h e r j u s t i s n ' t very long; i t doesn't take much to upset me, or to push me too f a r these days. I'm j u s t not as st r o n g as I was; d e f i n i t e l y more on the s u r f a c e . I can go along and I ' l l t h i n k I'm ok, and everyone e l s e t h i n k s I'm ok, but i t sure doesn't take much to upset t h a t e q u i l i b r i u m . Most women in t h i s study were interviewed between 1 and 2 years a f t e r r a d i c a l surgery. These women were s t i l l e x p e r i e n c i n g acute g r i e f due to the second stage of the g r i e v i n g process. Yet, they were not provided with p r o f e s s i o n a l emotional support at t h i s time. One woman was interviewed 4 years a f t e r r a d i c a l surgery which had caused the los s of her uterus, vagina, and bladder. She had not r e c e i v e d p r o f e s s i o n a l emotional support, and her d e s c r i p t i o n s i n d i c a t e d t h a t she had unfavorably i n t e g r a t e d the surgery's l o s s e s and g r i e f i n t o her l i f e . In a d d i t i o n , the death of her f a v o r i t e n i e c e soon a f t e r the r a d i c a l surgery had compounded the g r i e v i n g process. T h i s woman's d e s c r i p t i o n s showed t h a t , due to e f f e c t s of the surgery, her p e r c e p t i o n of s e l f - w o r t h remained i n h i b i t e d . She had l i t t l e a b i l i t y f o r s e l f -d e t e r m i n a t i o n and p s y c h o l o g i c a l growth but, i n s t e a d , was f e a r f u l about f u t u r e l o s s e s , f e l t extremely l o n e l y and d e s p a i r i n g , and became unbearably tense when d e s c r i b i n g her f e e l i n g s : P: Hurt, yeah, I f e e l awful down and hur t . There's nothing t h e r e anymore. I can't go t o work, I can't jump on the bus and go v i s i t somebody and stay o v e r n i g h t . If I do, as c a r e f u l as I am, I s t i l l have a c c i d e n t s (due to the urostomy). And my o l d f r i e n d s now; they come once i n awhile, but i t ' s not l i k e before when we used t o go out. How can I make new f r i e n d s now? When I don't go to work, and I don't go to f u n c t i o n s ? I r e a l l y miss my work, t e r r i b l y . I f e e l l o n e l y and t e r r i b l e . Ever s i n c e I got s i c k I was l i k e a s h u t - i n . Now, I dread the weekends. I t r y to have someone i n f o r the weekends. My daughter or granddaughter can't come a l l the time. I j u s t dread i t i f I know no one i s coming. I t r i e d t o get a f r i e n d to come and she d i d n ' t . What a day! Whatever I cooked up I j u s t f e l t l i k e f l u s h i n g i t down the t o i l e t . There was no one to share i t with. I need somebody around. What have I got to l i v e f o r ? Four w a l l s and a c e i l i n g and a f l o o r ? And a f t e r about 9 o'clock I t h i n k , "Well, whatever was going to happen t h a t day i s over and done wit h . " I t h i n k , "Thank God, I pushed t h i s day through." There i s n ' t much to look forward t o . I t ' s l i k e when I have v i s i t o r s come here f o r a week or two, i t gets so sometimes I can't handle i t when they are gone. Oh, boy, do I ever f e e l down. L i k e i n the bottom of the p i t ; i t ' s so q u i e t ; the house seem ten times q u i e t e r than i t used to be. The w a l l s seem to whisper darkness. I couldn't have i t s t i l l ; I have the TV going a l l the time. Being l o n e l y i s l i k e being i n an empty b a r r e l ; i t ' s j u s t so q u i e t and dense. L i k e you can't move, or can't see. Somebody shut me i n . The s i l e n c e i s so s i l e n t t h a t the n o i s e i s k i 1 1 i ng me. She r e a l i z e d t h a t the surgery's negative e f f e c t s had reduced her s e l f - d e t e r m i n a t i o n and p s y c h o l o g i c a l growth but she d i d not know how to change t h i s : P: I had s e l f - c o n f i d e n c e before the surgery. I worked and I had no problem having a party of four or f i v e ; cook up something new. If I have anymore than four people in now, I get a l l shaky, and I can't seem to cope with i t . I don't th i n k I could handle work now, even i f I had a chance. I'd f a l l a part at the seams. My sense of confidence i s gone. I have f e a r of g e t t i n g worse, g e t t i n g s i c k e r . What would happen to me? She had avoided, as much as p o s s i b l e , s h a r i n g her g r i e f with others a f t e r the surgery. She d i d not have access to p r o f e s s i o n a l emotional support, and she a l s o b e l i e v e d t h a t showing g r i e f to others was "weak." It i s known t h a t the pain of g r i e v i n g can be i n t e n s e l y uncomfortable and that many behaviors are used to avo i d e x p e r i e n c i n g g r i e f , f o r example: - C o n t i n u i n g to deny the l o s s . - I n t e l l e c t u a l i z i n g about the l o s s . - Repressing f e e l i n g s . - Macho m e n t a l i t y ("I'm s t r o n g ; I can handle i t by m y s e l f " ) . - Using a l c o h o l or drugs. - Prolonged attempt to get the l o s t o b j e c t back. ( W h i t f i e l d , 1987, p. 93). T h i s woman repre s s e d her v u l n e r a b l e f e e l i n g s when with o t h e r s . She s u b s c r i b e d to the macho-mentality and i n t e l l e c t u a l i z e d about her losses to avoid g r i e v i n g : P: I'd spend most of the day c r y i n g a f t e r the b i g surgery and when my niece d i e d . I couldn't hold i t back then. I'm a l l r i g h t now. I've got to l i v e tomorrow and the next day with myself. I t ' s a l l b o t t l e d up, l i k e a t i g h t screw. I know i t ' s t h e r e , but I can't get at i t . It h u r t s . I would maybe even f i n d i t depressing i f I had to meet every week and t a l k about i t . T h i s way I'm p u t t i n g i t on the back burner as I t o l d you; I'm b e t t e r o f f . You see I'm g e t t i n g very emotional now j u s t t a l k i n g about i t with you, and I don't th i n k i t helps me none; i t j u s t b r i n g s i t up a l l the more. Other si g n s of unfavorably i n t e g r a t i n g a major l o s s and g r i e f are f e e l i n g a prolonged sense of w a i t i n g f o r something to happen, hopelessness, and a sense t h a t l i f e i s not worthwhile (Simos, 1979). These f e e l i n g s c o n t r i b u t e t o r e s i g n e d , p a s s i v e , and f a t a l i s t i c p e r c e p t i o n s which i n h i b i t s e l f - d e t e r m i n a t i o n and p s y c h o l o g i c a l growth: P: You see my mother was way over f o r t y , I thi n k f o r t y - s i x when she had me, and her body wasn't t h a t s t r o n g ; she'd had e i g h t c h i l d r e n b e f o r e . So I've got to have something wrong with me a l l the time. I was an a c c i d e n t w a i t i n g to happen. Cancer was j u s t supposed t o happen to me. I t ' s a matter of luck, the way i t was. I thin k e v e r y t h i n g i s w r i t t e n in the book, the day you were born; whatever you are going to go through, no matter i f you stand on your head, you can't avoid i t . I couldn't avoid t h i s surgery, no matter what. My body had to take i t , whatever the body was in t e n d i n g to do. Even now I'm w a i t i n g f o r the bombshell to f a l l . There's heaven and h e l l r i g h t here on t h i s e a r t h . And the lucky people get the breaks and the unlucky ones don't. When I thin k about myself, what I was born i n t o , and what has been happening to me the past years, I wonder, "Why was I born at a l l ? " I'm i n c l i n e d t o quest i o n the Lord about the purpose of l i f e . There are some people born he a l t h y ; they s a i l r i g h t through l i f e , they hardly have a h a n g n a i l , and then they d i e of a heart attack and "boom," i t ' s over. I can't get any answers; a l l I t h i n k i s , "Not f a i r , " t h a t ' s a l l , "Why do some people have i t and others don't go through a l l the pain?" The unfavorable i n t e g r a t i o n of loss and g r i e f c l e a r l y i n h i b i t s the p e r c e p t i o n of s e l f - w o r t h and reduces s e l f - d e t e r m i n a t i o n and p s y c h o l o g i c a l growth. On the other hand, the women who showed f a v o r a b l e i n t e g r a t i o n of loss and g r i e f developed p o s i t i v e meanings f o r t h e i r l o s s e s and f e l t mostly o p t i m i s t i c and se l f - d e t e r m i n e d about l i f e . A f a v o r a b l e i n t e g r a t i o n of los s and g r i e f i s necessary to renew a woman's pe r c e p t i o n of s e l f - w o r t h a f t e r t h i s r a d i c a l surgery: P: I was adopted and t h a t was always an is s u e f o r me. I d i d n ' t want to adopt, so, maybe t h i s whole t h i n g i s a way of d e a l i n g with being adopted myself i f I adopt c h i l d r e n in the f u t u r e . Since I've had cancer and gone through a l l t h a t ; i t ' s almost l i k e i t had a purpose in i t , and my doing t h a t was what I somehow chose t o go through; t h a t I had the experience i n order to be able to go on and help o t h e r s ; I t h i n k t o help others with t h e i r own s e l f -h e a l i n g . I s a i d to one of the g i r l s at work who has b r e a s t cancer, "Well, you know, i n the end, when you make i t through a l l of t h i s and you come out on the other s i d e , t h e r e are some s i d e b e n e f i t s to i t . " I t ' s too bad people have to get as s i c k as we d i d to a p p r e c i a t e the f u l l n e s s of l i f e . It does make you a p p r e c i a t e what you've got, because you might 1ose i t a l l . T h i s woman a l s o b e l i e v e d t h a t developing cancer was l i n k e d to her previous negative r e l a t i o n s h i p : P: I am a f a i r l y p o s i t i v e person, even before I got cancer, but the r e l a t i o n s h i p t h a t I was in at the time was a very negative r e l a t i o n s h i p . I thi n k i t t r i g g e r e d i t . I'm c e r t a i n i t d i d . I was very unhappy i n the year before my cancer i n t h i s r e l a t i o n s h i p I was i n . He was an a l c o h o l i c . I look back at i t i n r e t r o s p e c t and i t was almost l i k e he was e m o t i o n a l l y c r u e l . Not as i f he set out to be c r u e l , but he was so screwed up i n h i s mind t h a t ; t r y i n g to deal with him at one p o i n t ; I s a i d to myself, or to him; "I can't keep going on l i k e t h i s because I'm going to make myself s i c k . " It took u n t i l I went i n t o the h o s p i t a l though, before I could t e l l him t h a t I couldn't handle him any more. I t r y to stay away from negative r e l a t i o n s h i p s now. She a l s o showed s e l f - d e t e r m i n a t i o n in her a b i l i t y to be a s s e r t i v e about planning f o r a v a g i n a l r e c o n s t r u c t i o n 2 years a f t e r surgery: P: They d i d n ' t want to do the r e c o n s t r u c t i o n because they were a f r a i d i t would mess up my bladder even more. The bladder and rectum were adhesed together with scar t i s s u e , and i t would be one more trauma to the bladder and i t could t e a r and not heal p r o p e r l y . I t o l d the surgeon about r e a l l y wanting a vagina, and he made some comment l i k e : "Well, sex i s n i c e but...", and I s a i d , "Well, easy f o r you to say." And he s a i d , "What are you doing?" and made some comment about my b o y f r i e n d , and I s a i d , "I don't have one, and t h a t ' s j u s t i t ; I'm a v o i d i n g having r e l a t i o n s h i p s with men, and t h a t ' s not good." I t h i n k he understood t h a t . I thought, "Well, i t ' s not funny; he s a i d sex i s good but not e v e r y t h i n g , and how would he f e e l i f he d i d n ' t have a penis? What would you say? E v e r y t h i n g i s f i n e ? " Another woman d e s c r i b e d s i m i l a r b e l i e f s about reasons f o r developing cancer which i n d i c a t e d t h a t she was f a v o r a b l y i n t e g r a t i n g her lo s s of s e c u r i t y due to the t h r e a t of having cancer: P: I look back now and t h i n k i t must have been the most unhappy p e r i o d of my l i f e ; those two years before being diagnosed with cancer. Grasping on and d e a l i n g with the cancer was a r e l i e f because you c o u l d deal with i t . One doctor I spoke t o was sure t h a t I was so unhappy and th e r e was so much s t r e s s , t h a t t h i s was the c a t a l y s t f o r the c e l l s to go i n th a t d i r e c t i o n ; to become malignant and domi nant. She a l s o d e s c r i b e d developing awareness of p s y c h o l o g i c a l growth due to her experience of having cancer: P: A l l of my l i f e I grew up with a f e e l i n g of blackness i n s i d e of me; a black storm or rage, and every once i n awhile i t would come out and completely overwhelm me. Even when times were good, I s t i l l knew i t was i n s i d e of me. I always wondered what i t meant and when I was going to have to come to terms with i t . I o f t e n wondered whether i t was a premonition t h a t t h i s (the cancer) was going t o happen i n my l i f e . I don't know i f I've d e a l t with i t yet; I don't know i f the cancer was i t , but I do know t h a t i n some way I f e e l more f r e e from i t than I ever have. One woman d e s c r i b e d changing her p e r s p e c t i v e about why she had developed cancer a f t e r her f i r s t i n t e r v i e w f o r t h i s study. During the f i r s t i n t e r v i e w , she had shared f e e l i n g s of g r i e f , f e a r , and shame with the r e s e a r c h e r . The i n t e r v i e w had a l s o been her f i r s t o p p o r t u n i t y to r e l e a s e her suppressed f e e l i n g s of acute g r i e f . During the second i n t e r v i e w , she d e s c r i b e d beginning to develop p o s i t i v e reasons f o r her experience which i n d i c a t e d she was f a v o r a b l y i n t e g r a t i n g her l o s s of s e c u r i t y due to her b e l i e f s about cancer: P: I always thought t h a t i f something bad l i k e cancer happens to someone, there i s a reason; i t ' s something bad i n the past t h a t they d i d and are being punished f o r . Now I t h i n k i t i s f o r good too, not j u s t t h a t you are being punished f o r i t , but t h a t i t has some d i f f e r e n t meaning that you don't know now, but maybe you are going to f i n d out l a t e r t h a t you had t h a t experience f o r a reason. Before I thought i t was a punishment, so I've changed s i n c e the surgery. I t h i n k i t ' s done a l o t f o r me because once you go through t h a t experience; l i f e i s more p r e c i o u s ; you t r e a s u r e i t more. Everyday. I f e e l more ambitious; I t r y to do a l o t of t h i n g s and t r y to do them w e l l . Before, I j u s t learned how to play t e n n i s , but i t d i d n ' t matter to me i f I was p l a y i n g good or not, and now; I want to play good. I f e e l l i k e I have to do more; e v e r y t h i n g I do or l e a r n now, I t r y to do my best, which I never d i d before. It i s important f o r t h i s study to i n c l u d e the f a c t t h a t women's p e r c e p t i o n of s e l f - w o r t h has been h i s t o r i c a l l y i n h i b i t e d by language and b e l i e f s which have narrowly d e f i n e d female a b i l i t i e s and needs. T h e r e f o r e , even without the negative e f f e c t s of r a d i c a l surgery, a woman's p e r c e p t i o n of s e l f - w o r t h and a b i l i t y f o r s e l f - d e t e r m i n a t i o n and p s y c h o l o g i c a l growth have been i n h i b i t e d : There are widely h e l d b e l i e f s about female s e x u a l i t y and women's proper p l a c e and l i f e s t y l e which cross a whole range of d i s c u r s i v e f i e l d s from the f a m i l y , education and employment to the r e p r e s e n t a t i o n of women i n the media. These are b e l i e f s i n which i n d i v i d u a l s have vested i n t e r e s t s . Dominant d i s c o u r s e s of female s e x u a l i t y , which d e f i n e i t as n a t u r a l l y p a s s i v e , together with dominant s o c i a l d e f i n i t i o n s of women's pl a c e as f i r s t and foremost i n the home, can be found i n s o c i a l p o l i c y , medicine, education, the media and the church and elsewhere (Weedon, 1987, p. 36). These s o c i e t a l b e l i e f s cause the l o s s e s of f e r t i l i t y and s e x u a l i t y t o have s i g n i f i c a n t negative e f f e c t s on the sel f - i m a g e of women who have s t r o n g l y i n t e r n a l i z e d t h i s narrow view of female i d e n t i t y . Most of these women w i l l f e e l a s e r i o u s l o s s of i d e n t i t y due to the lo s s of f e r t i l i t y . T h i s s e c t i o n on the p e r c e p t i o n of s e l f - w o r t h a f t e r surgery i s concluded by 1 woman's d e s c r i p t i o n of how her s e l f - d e t e r m i n a t i o n has been decreased by i n t e r n a l i z i n g a narrowly d e f i n e d female i d e n t i t y : P: I thin k I would l i k e to be a nurse again. I enjoy i t and miss i t . There are a l l kinds of people and I care, and I'm proud of myself. That's why I don't l i k e j u s t s t a y i n g home and doing the housework; I l i k e to go out. My husband doesn't want me to work i n the h o s p i t a l now. He wants me to help him with h i s business (which she does, s i x days a week). I don't get to go out f o r myself. I"ve got the ki d s and I have t o look a f t e r them. It ' s not f a i r . My husband says I need a day f r e e f o r me, but I don't know how. Sometimes he says, "Now, today, j u s t r e l a x and go do your t h i n g . " But I don't know where to go. I go home and then I need to buy g r o c e r i e s . I want to go do e x c e r c i s i n g at the community c e n t r e , but I'm too t i r e d in the evening. If I don't cook, t h e r e i s nothing to eat in the evening. I buy the g r o c e r i e s , sometimes I l e t my husband go, but he doesn't do i t p r o p e r l y , you know how men are. A c t u a l l y , t here i s no day f o r me. I have t o plan i t . My husband doesn't have time t o cook. He goes e a r l y i n the morning and l a t e i n the evening. Summary In t h i s l a s t major category, Self-image A f t e r R a d i c a l Surgery For G y n e c o l o g i c a l Cancer, the women's d e s c r i p t i o n s of t h e i r B e l i e f s And F e e l i n g s About Cancer, showed how metaphorical language used t o d e s c r i b e cancer had negative e f f e c t s on se l f - i m a g e . S p e c i f i c a l l y , t h i s metaphorical language supported negative s u b j e c t i v e meanings about cancer which increased f e e l i n g s of intense f e a r , shame, and emotional f r a g i l i t y . One e f f e c t of these f e e l i n g s was th a t the women tended t o hide t h e i r d i a g n o s i s from others and i s o l a t e themselves from emotional support. In a d d i t i o n , the women's i n t e l l e c t u a l knowledge about cancer d i d not prevent them from e x p e r i e n c i n g h o r r o r and shame about having cancer. These f e e l i n g s were o f t e n suppressed. The women needed emotional support to explore and express these intense f e e l i n g s . C r e a t i v e w r i t i n g , f o r example, was a l s o h e l p f u l in h e l p i n g women express f e e l i n g s about cancer. In the second s u b - s e c t i o n , Changes In Body S t r u c t u r e And Fu n c t i o n , the women d e s c r i b e d how these changes had negative e f f e c t s on se l f - i m a g e . S p e c i f i c a l l y , the los s of f e r t i l i t y and the vagina, the loss of enjoyable v a g i n a l i n t e r c o u r s e , body s c a r s , and a urostomy had s i g n i f i c a n t negative e f f e c t s . The women 193 needed to f e e l s e x u a l l y d e s i r a b l e and be with an em o t i o n a l l y s u p p o r t i v e and g e n t l e p a r t n e r . They a l s o needed sexual c o u n s e l l i n g and encouragement to look at t h e i r changed body i n order t o develop acceptance and approval of se l f - i m a g e . The extent of these negative e f f e c t s depended on each woman's i n t e r n a l i z a t i o n of s o c i e t y ' s b e l i e f s about the female i d e n t i t y and female s e x u a l i t y . I n f l u e n t i a l medical and p o l i t i c a l w r i t i n g s have h i s t o r i c a l l y l a b e l l e d female s e x u a l i t y as abnormal and immoral which has i n h i b i t e d women's exp r e s s i o n of t h e i r sexual needs. In the t h i r d s u b - s e c t i o n , Percept ion-Of Self-Worth, the women's d e s c r i p t i o n s showed t h a t s e l f - w o r t h , s e l f -d e t e r m i n a t i o n , and p s y c h o l o g i c a l growth were a l s o a f f e c t e d by the surgery. The women d e s c r i b e d enhanced p e r c e p t i o n of s e l f - w o r t h f o r s e v e r a l months a f t e r surgery due to f e e l i n g p r i d e and s t r e n g t h i n t h e i r r ecovery. However, the process of g r i e v i n g the surgery's major l o s s e s l a t e r i n h i b i t e d the p e r c e p t i o n of s e l f - w o r t h and reduced s e l f - d e t e r m i n a t i o n and p s y c h o l o g i c a l growth. The g r i e v i n g process f o r a major l o s s takes between 2 and 4 years and, from the women's d e s c r i p t i o n s , t h e i r behaviors and f e e l i n g s of acute g r i e v i n g appeared to be most intense 1 t o 2 years a f t e r surgery. Furthermore, the women's a b i l i t y to p e r c e i v e s e l f - w o r t h was a l s o i n h i b i t e d by s o c i e t y ' s narrow d e f i n i t i o n of the female i d e n t i t y . T h i s concludes Chapter Four which presented the f i n d i n g s concerning women's experiences and needs. The summary and c o n c l u s i o n s of the study and i m p l i c a t i o n s of the f i n d i n g s are presented i n Chapter F i v e . CHAPTER FIVE SUMMARY, CONCLUSIONS, AND IMPLICATIONS FOR NURSING Summary The study was a q u a l i t a t i v e i n v e s t i g a t i o n of the s u b j e c t i v e experiences and needs of f i v e women who had experienced r a d i c a l surgery f o r g y n e c o l o g i c a l cancer. T h i s surgery was d e f i n e d as the removal of the uter u s , p a r t or a l l of the vagina and, i n some cases, the bladder, lower bowel, and o v a r i e s due to i n v a s i v e cancer. Although i t i s known t h a t many women experience prolonged d e p r e s s i o n and n e g a t i v i t y towards body image, s e x u a l i t y , and s e l f - e s t e e m a f t e r t h i s surgery, r e s e a r c h on women's s u b j e c t i v e experiences and needs f o l l o w i n g t h i s surgery i s l a c k i n g . T h e r e f o r e , a q u a l i t a t i v e study was proposed i n order to d e s c r i b e s p e c i f i c s u b j e c t i v e f a c t o r s which c o n t r i b u t e to the s i g n i f i c a n t negative e f f e c t s of t h i s surgery. A f e m i n i s t t h e o r e t i c a l framework provided a r a t i o n a l e f o r a n a l y z i n g women's s u b j e c t i v e experiences by s t u d y i n g t h e i r v e r b a l d e s c r i p t i o n s of the experience. Two resea r c h questions guided the study: What are women's pe r c e p t i o n s of t h e i r experiences and needs a f t e r r a d i c a l surgery f o r g y n e c o l o g i c a l cancer, and how do women experience s e l f -esteem and s e x u a l i t y a f t e r t h i s r a d i c a l surgery? The phenomenological r e s e a r c h method was s e l e c t e d f o r the study in order t o understand the s u b j e c t i v e r e a l i t y of the women's experiences. Using t h i s method, the data were c o l l e c t e d d u r i n g u n s t r u c t u r e d i n t e r v i e w s with each of f i v e women who had experienced r a d i c a l surgery f o r g y n e c o l o g i c a l cancer w i t h i n the previous 4 years. Two i n t e r v i e w s , 6 months apart, were conducted with each woman. A l l i n t e r v i e w s were tape-recorded, and each l a s t e d between 1 and 3 hours. Using the phenomenological process of a n a l y z i n g s u b j e c t i v e data, t h r e e major c a t e g o r i e s with sub-headings were g r a d u a l l y developed which provide a meaningful d e s c r i p t i o n of the f i v e women's s u b j e c t i v e experiences. These c a t e g o r i e s and sub-headings d e s c r i b e common themes which emerged from the i n t e r v i e w s . Major C a t e g o r i e s and Sub-headings I. FINDING OUT ABOUT HAVING GYNECOLOGICAL CANCER Sensing That Something Was Wrong Reacting To The Cancer Diagnosis Needing Support From Others Understanding The Surgery II. PHYSICAL RECOVERY AFTER RADICAL SURGERY FOR GYNECOLOGICAL CANCER Needing Time To Regain Strength Bowel And Bladder Problems Vaginal H e a l i n g And R e c o n s t r u c t i o n I I I . SELF-IMAGE AFTER RADICAL SURGERY FOR GYNECOLOGICAL CANCER B e l i e f s And F e e l i n g s About Cancer Changes In Body S t r u c t u r e And Function P e r c e p t i o n Of Self-Worth Cone 1 us ions The women's d e s c r i p t i o n s c l e a r l y show t h a t r a d i c a l surgery f o r g y n e c o l o g i c a l cancer was an e m o t i o n a l l y and p h y s i c a l l y t r a u m a t i c experience. C o n c l u s i o n s are presented in two major areas: emotional and p h y s i c a l needs and experiences. Emotional Needs And Experiences 1. F i n d i n g out the cancer d i a g n o s i s and e x p e r i e n c i n g the e f f e c t s of r a d i c a l surgery caused emotional d i s t r e s s . 2. The lack of adequate emotional support c o n t r i b u t e d to the s e v e r i t y of the women's emotional di s t r e s s . 3. The women pe r c e i v e d l i t t l e emotional support from h e a l t h p r o f e s s i o n a l s when they were t o l d the cancer d i a g n o s i s . 4. It was d i f f i c u l t f o r the women to accept or o b t a i n adequate emotional support from t h e i r f a m i l y and f r i e n d s due to f e e l i n g s of i s o l a t i o n , shame, 198 r e l u c t a n c e to show emotional v u l n e r a b i l i t y , and the i n a b i l i t y of ot h e r s t o provide emotional support. 5. The women were d i s s a t i s f i e d with t h e i r l e v e l of understanding about the surgery's p h y s i c a l and emotional e f f e c t s . They f e l t i n t i m i d a t e d and emot i o n a l l y v u l n e r a b l e when with p h y s i c i a n s and d i d not know what questions to ask i n order t o gain an understanding of the surgery's p h y s i c a l e f f e c t s . 6. Metaphorical language commonly used to d e s c r i b e cancer increased the women's f e e l i n g s of h o r r o r , shame, and i s o l a t i o n from o t h e r s . 7. The women d e s c r i b e d how the los s of f e r t i l i t y , the l o s s of the vagina, the loss of enjoyment of sexual i n t e r c o u r s e , and the l o s s of body image (due to l a r g e body s c a r s ) , caused prolonged negative e f f e c t s on se l f - i m a g e . 8. Developing a new i d e n t i t y was d i f f i c u l t when the t r a d i t i o n a l p a t r i a r c h a l d e f i n i t i o n of female i d e n t i t y had been promoted during the woman's ch i l d h o o d . I n t e r n a l i z i n g a narrow female i d e n t i t y had negative e f f e c t s on s e l f - d e t e r m i n a t i o n . 9. The women's p e r c e p t i o n s of s e l f - w o r t h were i n i t i a l l y enhanced by t h e i r f e e l i n g s of p r i d e and s t r e n g t h about s u r v i v i n g cancer, r e c o v e r i n g p h y s i c a l l y from the surgery, and overcoming severe p a i n . 10. G r i e v i n g f o r the s e v e r a l major lo s s e s caused by the r a d i c a l surgery became intense 1 to 2 years a f t e r surgery. The women d i d not understand the g r i e v i n g process but thought t h a t the behaviors and f e e l i n g s of g r i e f which developed s e v e r a l months a f t e r surgery were s i g n s of mental i l l n e s s . The behaviors and f e e l i n g s of unfavorably i n t e g r a t e d loss and g r i e f i n h i b i t e d the women's p e r c e p t i o n of s e l f - w o r t h and a b i l i t y f o r s e l f - d e t e r m i n a t i o n , even 4 years a f t e r surgery. 11. The exp r e s s i o n of f e e l i n g s to an empathetic l i s t e n e r d r a m a t i c a l l y reduced a n x i e t y . 12. Due to negative b e l i e f s about cancer, some women found i t d i f f i c u l t to develop a s a t i s f a c t o r y personal meaning about the experience of having cancer. P h y s i c a l Needs And Experiences 1. The women were s u r p r i s e d and f r u s t r a t e d by the extent of t h e i r p h y s i c a l weakness due to t h i s surgery and needed at l e a s t t hree months to r e g a i n s t r e n g t h . 2. The women had s e r i o u s and prolonged bladder problems due to t h i s surgery. 3. The 2 women who had v a g i n a l r e c o n s t r u c t i o n experienced severe pain during v a g i n a l mold changes. 200 The women who were s e x u a l l y a c t i v e d e s c r i b e d having severe pain d u r i n g attempts at sexual i n t e r c o u r s e f o r s e v e r a l months a f t e r surgery. Imp!icat ions  I m p l i c a t i o n s For Nursing P r a c t i c e Although r a d i c a l surgery f o r g y n e c o l o g i c a l cancer i s not a common procedure, much of the inf o r m a t i o n gained from t h i s study has i m p l i c a t i o n s f o r general g y n e c o l o g i c a l nursing p r a c t i c e . In p a r t i c u l a r , the study's f i n d i n g s have i m p l i c a t i o n s f o r nu r s i n g care a f t e r the common s u r g i c a l procedure of removing the uterus and o v a r i e s due to cancer, f i b r o i d s , or endometr i os i s. Emotional Problems From the time t h a t the cancer was diagnosed, or even suspected, the women i n t h i s study needed emotional support. A r e f e r r a l from the women's p h y s i c i a n s to community h e a l t h nurses would have provided the women with e a r l y and ongoing p r o f e s s i o n a l support. T h i s would have helped to reduce the women's anx i e t y through the e x p l o r a t i o n and v e n t i l a t i o n of t h e i r b e l i e f s and f e e l i n g s about cancer, p r o v i d i n g i n f o r m a t i o n about g y n e c o l o g i c a l cancer and r a d i c a l surgery, and a l l o w i n g f o r e a r l y home-assessment and f a m i l y c o u n s e l l i n g . Such h e a l t h care s e r v i c e s by community h e a l t h nurses would 201 ensure c o n t i n u i t y of care and provide p r o f e s s i o n a l support f o r emotional and p h y s i c a l h e a l i n g a f t e r t h i s surgery. Health p r o f e s s i o n a l s should be aware t h a t women need emotional c o u n s e l l i n g s e v e r a l months a f t e r t h i s r a d i c a l surgery t o help them understand the behaviors of acute g r i e v i n g and achieve a f a v o r a b l e i n t e g r a t i o n of loss and g r i e f . The l a t t e r r e q u i r e s the repeated e x p r e s s i o n of f e e l i n g s about the los s to an empathetic l i s t e n e r . Community h e a l t h nurses could help f a c i l i t a t e the process of g r i e v i n g and a l s o ensure t h a t these women r e c e i v e emotional support from other p r o f e s s i o n a l c o u n s e l l o r s and support groups when necessary. Women who are unable t o see p r o f e s s i o n a l c o u n s e l l o r s or attend support groups due to geographical d i s t a n c e could be given the addresses of other women who have experienced s i m i l a r surgery and are w i l l i n g to correspond. The women a l s o d e s c r i b e d needing s p e c i f i c i n f o r m a t i o n and emotional support during t h e i r recovery p e r i o d i n the h o s p i t a l . It i s important t h a t nurses develop e d u c a t i o n a l m a t e r i a l s and videos about the prolonged e f f e c t s of t h i s type of surgery and orga n i z e v i s i t s with women who have had s i m i l a r surgery. Ensuring t h a t these women are able t o communicate with each other i s an important n u r s i n g i n t e r v e n t i o n . A l i a i s o n between h o s p i t a l and community h e a l t h nurses i s needed t o ensure t h a t the women are r e f e r r e d f o r c o u n s e l l i n g and home-care support s e r v i c e s before d i s c h a r g e from h o s p i t a l . Nurses could help women to look at the r e c o n s t r u c t e d vagina by using a m i r r o r and a g l a s s speculum or d i l a t o r . The women i n t h i s study s t a t e d t h a t seeing the r e c o n s t r u c t e d vagina was an important step i n ac c e p t i n g and l i k i n g t h i s new body p a r t as well as reducing anxiety about c a r i n g f o r the r e c o n s t r u c t i o n . Looking at changed body pa r t s and having p o s i t i v e experiences with o t h e r s were d e s c r i b e d by the women as enhancing the development of a s a t i s f a c t o r y s e l f - i m a g e a f t e r t h i s surgery. A p o s i t i v e experience with nurses might help women to begin the process of a c c e p t i n g the va g i n a l r e c o n s t r u c t i o n , body s c a r s , and ostomies. P h y s i c a l Problems Nurses could teach p e l v i c f l o o r e x e r c i s e s which i n c r e a s e bladder c o n t r o l a f t e r g y n e c o l o g i c a l surgery. The women d e s c r i b e d e x p e r i e n c i n g prolonged and s i g n i f i c a n t bladder c o n t r o l problems. Information could be given on handling s t r e s s i n c o n t i n e n c e as well as encouragement t h a t bladder c o n t r o l w i l l improve slowly a f t e r s e v e r a l weeks. The women d e s c r i b e d being concerned about odor from u r i n a r y i n c o n t i n e n c e . T e l l i n g a woman about the use of a p l a s t i c p e r i n e a l c l e a n s i n g b o t t l e , f o r example, reduced 1 woman's need f o r s e v e r a l showers each day and conserved her energy. C o n s t i p a t i o n was a l s o a s i g n i f i c a n t problem a f t e r t h i s surgery, e s p e c i a l l y f o r women who experienced v a g i n a l r e c o n s t r u c t i o n . Nurses could emphasize the importance of i n g e s t i n g s t o o l s o f t e n e r s , l a x a t i v e s , and high f i b e r foods as soon as p o s s i b l e a f t e r surgery and, perhaps, even dur i n g the w a i t i n g p e r i o d before surgery. I m p l i c a t i o n s For Nursing Education Nursing education should provide a grea t e r emphasis on c o u n s e l l i n g s k i l l s , p a r t i c u l a r l y the s k i l l s of emotional support which f a c i l i t a t e the g r i e v i n g process. In a d d i t i o n , n u r s i n g education should provide p r a c t i c e in the s k i l l s of sexual c o u n s e l l i n g . Students need t o understand the extent of p s y c h o l o g i c a l trauma t h a t i s o f t e n caused by the los s of f e r t i l i t y and l o s s e s i n s e x u a l i t y . They should e x p l o r e the r e l a t i o n s h i p of t h i s l o s s t o the s o c i a l i z e d female i d e n t i t y h i s t o r i c a l l y shaped by p e r s u a s i v e s o c i a l , economic, and p o l i t i c a l w r i t i n g s . An i n t r o d u c t i o n to women's s t u d i e s should be an e s s e n t i a l element i n nu r s i n g education s i n c e p a t r i a r c h a l b e l i e f s and a t t i t u d e s continue t o oppress women and act as a s i g n i f i c a n t negative f o r c e i n s e v e r a l areas of women's h e a l t h . I m p l i c a t i o n s For Nursing Research The f i n d i n g s of t h i s study suggest the f o l l o w i n g areas in which f u r t h e r r e s e a r c h would be of value. S i m i l a r s t u d i e s of women who have experienced t o t a l hysterectomy and other major g y n e c o l o g i c a l surgery would help to determine i f the r e are common needs and areas of concern which should be addressed by nu r s i n g i n t e r v e n t i o n s . F u r t h e r study of bowel and bladder problems and concerns would be of a s s i s t a n c e to nurses in developing p r o t o c o l s and nur s i n g i n t e r v e n t i o n s . A d d i t i o n a l s t u d i e s of the development and e f f e c t i v e n e s s of p r e - o p e r a t i v e t e a c h i n g techniques would be u s e f u l . For example, the value of a l l o w i n g women to see and touch a v a g i n a l mold p r i o r to r e c o n s t r u c t i o n could be assessed. I d e n t i f i c a t i o n and e v a l u a t i o n of nursing i n t e r v e n t i o n s which promote a f a v o r a b l e outcome of the g r i e v i n g process r e l a t e d t o l o s s of f e r t i l i t y and lo s s e s in s e x u a l i t y would help to enhance the q u a l i t y of nu r s i n g care. In summary, the women's d e s c r i p t i o n s of t h e i r experiences and needs a f t e r r a d i c a l surgery f o r g y n e c o l o g i c a l cancer show t h a t adequate emotional support i s r e q u i r e d t o manage t h i s l i f e c r i s i s . With such support, a f a v o r a b l e i n t e g r a t i o n of the loss and g r i e f caused by the surgery i s more l i k e l y t o be achieved. T h i s , in t u r n , w i l l help t o reduce the numbers of women who experience prolonged depression and f u r t h e r i l l n e s s due to unresolved bereavement a f t e r t h i s type of surgery. 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P e r s o n a l i t y a n d s u r g i c a l r e c o v e r y : A r e v i e w . B r i t i s h J o u r n a l o f  C l i n i c a l P s y c h o l o g y . 20., 2 4 3 - 2 6 0 . M i l l e r , A. ( 1 9 8 4 ) . T h o u s h a l t n o t b e a w a r e : S o c i e t y ' s  b e t r a y a l o f t h e c h i l d . New Y o r k : M e r i d i a n . M o r r a , M. E . ( 1 9 8 8 ) . C h o i c e s : Who's g o i n g t o t e l l t h e p a t i e n t s w h a t t h e y n e e d t o know. O n c o l o g y N u r s i n g . 1 5 . ( 5 ) , 4 2 1 - 4 2 5 . Mort, F. (1987). Dangerous s e x u a l i t i e s . New York: Routledge and Kegan Paul. Omery, A. (1983). Phenomenology: A method f o r n u r s i n g r e s e a r c h . Advances i n Nursing S c i e n c e . 5_(2), 49-63. P e a r s a l l , P. (1987). Super immunity. New York: B a l l e n t i n e . P i r i e , M. (1988). Women and the i l l n e s s r o l e : R ethinking f e m i n i s t theory. Canadian Review of  Soc i o l o g y & Anthropology. 25.(4), 628-648. Roberts, R. (1985). The p a t i e n t p a t i e n t s . London: Pandora Press. Sanford, L,. & Donovan, M. (1985). Women and s e l f - esteem: Understanding and improving the way we  thi n k and f e e l about o u r s e l v e s . O n t a r i o : Penguin. Saunders, J . Ii. , & Valente, S. Ii. (1988). Cancer and s u i c i d e . Oncology Nursing. 15(5). September-October, 575-581. Segal, J . (1984). L i v i n g beyond f e a r . C a l i f o r n i a : Newcast1e. S e i g a l , R. (1985). Change and c r e a t i v i t y at m i d l i f e . In J . Robbins & R. S i e g a l ( E d s . ) , Women-changing  therapy: New assessments, v a l u e s , and s t r a t e g i e s i n  f e m i n i s t therapy (pp. 95-111). New York: Harr i ngton-Park. Sewel, H., & Edwards, D. (1980). P e l v i c g e n i t a l cancer: Body image and s e x u a l i t y . Front. Rad. Therapy  Oncology. 14. 35-41. Simos, B.G. (1979). A time to g r i e v e : Loss as a u n i v e r s a l human experience. New York: Family S e r v i c e s A s s o c i a t i o n of America. Sloan, D. (1978). The emotional psychosexual aspects of hysterectomy. American Journal of O b s t e t r i c s and  Gynecology. 131. J u l y , 598-605. S m i t h , D. ( 1 9 7 7 ) . A s o c i o l o g y f o r women. In J . S h e r m a n & E . B e c k ( E d s . ) , T h e p r i s m o f s e x ( p p . 1 3 5 - 1 8 7 ) . M a d i s o n : U n i v e r s i t y o f W i s c o n s i n P r e s s . S o n t a g , S. ( 1 9 7 8 ) . I l l n e s s a s m e t a p h o r . New Y o r k : F a r i a r , S t r a w , a n d G i r o u x . S p e n d e r , D. ( 1 9 8 0 ) . M anmade l a n g u a g e . New Y o r k : R o u t l e d g e a n d K e g a n P a u l . S t a u d a c h e r , C. ( 1 9 8 7 ) . B e y o n d G r i e f . C a l i f o r n i a : New H a r b i n g e r . S t e p t o e , A . , H o r t i , J . , & S t a n t o n , S. ( 1 9 8 6 ) . C o n c e r n a b o u t c a n c e r i n women u n d e r g o i n g e l e c t i v e g y n e c o l o g i c a l s u r g e r y . S o c i a l S c i e n c e a n d M e d i c i n e . 23.( 1 1 ) , 1 139-1 1 4 5 . S t e v e n s o n , R. ( 1 9 8 6 ) . S e x u a l r e h a b i l i t a t i o n . C a n a d i a n  F a m i 1y P h y s i c i a n . 32., 1 8 4 3 - 1 8 4 7 . T a l l e d o , 0. ( 1 9 8 5 ) . P e l v i c e x e n t e r a t i o n : M e d i c a l C o l l e g e o f G e o r g i a e x p e r i e n c e . G y n e c o l o g i c O n c o l o g y . 2 2 . 1 8 1 - 1 8 8 . T h o r n e , S. E . ( 1 9 8 8 ) . H e l p f u l a n d u n h e l p f u l c o m m u n i c a t i o n s i n c a n c e r c a r e : T h e p a t i e n t p e r s p e c t i v e . O n c o l o g y N u r s i n g F o r u m . 1 5 ( 2 ) . 1 6 7 -17 2 . T u c k e t t , D. A., B o u l t o n , M., & O l s o n , C. ( 1 9 8 5 ) . A new a p p r o a c h t o t h e m e a s u r e m e n t o f p a t i e n t s ' u n d e r s t a n d i n g o f w h a t t h e y a r e t o l d i n m e d i c a l c o n s u l t a t i o n s . J o u r n a l o f H e a l t h a n d S o c i a l  B e h a v i o r . 16., ( M a r c h ) , 2 7 - 3 8 . V e r a , M. ( 1 9 8 1 ) . Q u a l i t y o f l i f e f o l l o w i n g p e l v i c e x e n t e r a t i o n . G y n e c o l o g i c O n c o l o g y . 1 2. 3 5 5 - 3 6 6 . V i c k e r s , J . ( e d . ) . ( 1 9 8 4 ) . T a k i n g s e x i n t o a c c o u n t : T h e  p o l i c y c o n s e q u e n c e s o f s e x i s t r e s e a r c h . O t t a w a : C a r l e t o n U n i v e r s i t y P r e s s . Webb, B. J . ( 1 9 8 6 ) . A y e a r w i t h c a n c e r : J o u r n a l e x c e r p t s . I n V a n e s s a p r e s s , P u b l i s h e r s ( E d s . ) , B i t s  o f o u r s e l v e s ( p p . 1 6 - 3 3 ) . A l a s k a : V a n e s s a p r e s s . Webb, C. (1985). G y n a e c o l o g i c a l n u r s i n g : A compromising s i t u a t i o n . Journal of Advanced Nursing. 10(1). 47-54. Weedon, C. (1987). F e m i n i s t p r a c t i c e and post- s t r u c t u r a l i s t theory. New York: B a s i l B l a c k w e l l . W h i t f i e l d , C. (1987). Healing the c h i l d w i t h i n . F l o r i d a : Health Communications. Wiley, L. ( e d . ) . (1979). D e a l i n g with d e p r e s s i o n a f t e r r a d i c a l surgery. Nursing '79. February, 47-51. 2 1 3 APPENDIX A Information And Consent My name i s Dayna Janyce. I am a r e g i s t e r e d nurse completing my master's degree in n u r s i n g at the U n i v e r s i t y of B r i t i s h Columbia. My resea r c h study i s on the experiences of women a f t e r r a d i c a l surgery f o r p e l v i c cancer. The e f f e c t s of t h i s surgery have not been adequately d e s c r i b e d and I b e l i e v e t h a t t h i s i s necessary to improve n u r s i n g care. PLEASE UNDERSTAND THAT YOU ARE NOT OBLIGATED TO PARTICIPATE IN MY RESEARCH AND THAT YOUR REFUSAL WILL NOT AFFECT FUTURE MEDICAL OR NURSING CARE. If you do wish to p a r t i c i p a t e i n my re s e a r c h , I w i l l need two, hour long i n t e r v i e w s with you at your convenience. During these i n t e r v i e w s I w i l l t a p e - r e c o r d the two of us t a l k i n g about your experiences. You may r e f u s e to answer questions and you may a l s o ask f o r any par t of the tape to be erased. I w i l l be s e n s i t i v e to your f e e l i n g s . Your i d e n t i t y w i l l be kept s t r i c t l y c o n f i d e n t i a l , and I w i l l use code names on a l l m a t e r i a l s . The a c c i d e n t a l mention of names or other i d e n t i f y i n g i n f o r m a t i o n w i l l a l s o be erased. PLEASE UNDERSTAND ALSO THAT YOU MAY STOP PARTICIPATING IN MY RESEARCH AT ANY TIME WITHOUT PENALTY. Please c a l l me i f you wish t o p a r t i c i p a t e or i f you have f u r t h e r questions before agreeing to par t i c i pate. phone tt Thank-you, Dayna Janyce, R.N. I hereby give my consent to p a r t i c i p a t e i n Dayna Janyce's r e s e a r c h f o r her master's t h e s i s . I agree t h a t I have a copy of t h i s i n f o r m a t i o n and consent form and t h a t the study has been adequately e x p l a i n e d t o me. Signed Witness Date T i t l e of P r o j e c t : R a d i c a l Surgery For G y n e c o l o g i c a l Cancer: A Feminist Phenomenological Study 

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