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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 RADICAL  E X P E R I E N C E S OF  SURGERY FOR G Y N E C O L O G I C A L C A N C E R :  A FEMINIST  PHENOMENOLOGICAL  STUDY  By DAYNA G A Y L E J A N Y C E •N.,  The  THESIS THE  University  SUBMITTED  of  IN  PARTIAL  REQUIREMENTS MASTER  British  Columbia,  FULFILLMENT  FOR THE D E G R E E OF  OF S C I E N C E  IN  NURSING  in THE  F A C U L T Y OF GRADUATE School  We  accept to  THE  this  the  of  Nursing  thesis  required  UNIVERSITY  OF  Dayna  Gayle  as  conforming  standard  BRITISH  October, (c)  STUDIES  COLUMBIA  1989 Janyce,  1989  1 OF  In  presenting  degree freely  at  the  available  copying  of  department publication  this  of  in  partial  fulfilment  University  of  British  Columbia,  for  this or  thesis  reference  thesis by  this  for  his thesis  and  scholarly  or for  her  The University of British Columbia Vancouver, Canada  I  I further  purposes  gain  the  shall  requirements  agree  that  agree  may  representatives.  financial  permission.  DE-6 (2/88)  study.  of  be  It not  that  the  Library  by  understood be  an  advanced  shall  permission for  granted  is  for  allowed  the  make  extensive  head  that  without  it  of  copying my  my or  written  ii ABSTRACT It  i s recognized  gynecological on  cancer  women's body  that radical causes  surgery for  significant  image, s e x u a l i t y ,  negative  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 feelings  o f d e p r e s s i o n and n e g a t i v i t y  even two y e a r s cancer. which  after  removal  cause these  prolonged  i n f o r m a t i o n was s o u g h t women f o l l o w i n g t h i s The  study's  direction through  radical  experiences  perceptions.  gave  through  needs and e x p e r i e n c e s  sexual  analyzing their  study's  related  verbal  e m o t i o n a l and to this  o u t about c a n c e r , the surgery,  needs, b e l i e f s  and c h a n g e s  emotionally  r e s e a r c h method  t h e d i s c o v e r y o f women's  others, understanding  The  framework  The women d e s c r i b e d t h e i r  included finding  cancer,  surgery.  The p h e n o m e n o l o g i c a l  subjective  recovery,  feelings,  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 e x p e r i e n c e s  as i t a l l o w e d  from  factors  on t h e s u b j e c t i v e e x p e r i e n c e s o f  was c h o s e n  which  negative  image  due t o  of s p e c i f i c  feminist theoretical  language.  physical  experience  t o w a r d s body  of the uterus  To g a i n an u n d e r s t a n d i n g  effects  surgery  needing  support  physical  and f e e l i n g s  about  i n body s t r u c t u r e and f u n c t i o n .  findings  and p h y s i c a l l y  show t h a t t h i s  surgery  traumatic experience.  was an I t was  i i i concluded that these women d i d not r e c e i v e professional  emotional  adequate  support and information about  e f f e c t s of t h i s s u r g e r y .  It  the  was a l s o concluded t h a t ,  although 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 by s u r v i v i n g t h i s also s i g n i f i c a n t l y which i n t e n s i f i e d  s u r g e r y , t h i s p e r c e p t i o n was  i n h i b i t e d by the g r i e v i n g process s e v e r a l months a f t e r  surgery.  The i m p l i c a t i o n s of the s t u d y ' s f i n d i n g s nursing p r a c t i c e ,  for  e d u c a t i o n , and r e s e a r c h 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 T h e o r e t i c a l  Framework  Research Questions The S t u d y ' s S i g n i f i c a n c e I n t r o d u c t i o n To Methodology D e f i n i t i o n Of Terms Assumpt i ons Limitation Summary CHAPTER TWO.  REVIEW OF LITERATURE  Introduct ion Self-Image And Women's Needs S e l f - E s t e e m And Women's Needs Sexuality Summary  And Women's Needs  V  CHAPTER THREE.  METHODOLOGY  25  Phenomenological Research  25  S e l e c t i n g The P a r t i c i p a n t s  27  Ethical Considerations  27  C o l l e c t i o n Of Data  28  A n a l y s i s Of Data  31  Summary  33  CHAPTER FOUR.  WOMEN'S EXPERIENCES AND NEEDS  34  Introduction  34  The P a r t i c i p a n t s  35  I.  F i n d i n g Out About Having G y n e c o l o g i c a l 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 II.  85  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  88  1. Needing Time To Regain Strength  88  2.  93  Bowel And Bladder Problems  3. Vaginal Summary  Healing And R e c o n s t r u c t i o n  100 123  V1  III.  Self-image  After  Radical  Surgery For  G y n e c o l o g i c a l Cancer  125  1. B e l i e f s And F e e l i n g s About Cancer  125  2. Changes In Body S t r u c t u r e  142  3.  And Function  P e r c e p t i o n Of S e l f - W o r t h  Summary CHAPTER FIVE.  165 192  SUMMARY, CONCLUSIONS, AND IMPLICATIONS  195  FOR NURSING Summary  195  Conclusions  197  Imp1i cat ions  200  I m p l i c a t i o n s For Nursing P r a c t i c e  200  I m p l i c a t i o n s For Nursing Education  203  I m p l i c a t i o n s For Nursing Research  204  BIBLIOGRAPHY  206  APPENDIX A  213  vi i L I S T OF FIGURES Figure  1.  A diagram of framework  the  feminist  theoretical 6  ACKNOWLEDGEMENTS  I wish to acknowledge the f o l l o w i n g their  individuals for  guidance, s u p p o r t , p a t i e n c e , and humor:  My t h e s i s a d v i s o r s : Dr.  Joan M. Anderson and  Dr. M a r i l y n D. Willman.  My mother:  Eve S t e i n h a u e r .  My p a r t n e r :  My f a m i l y  Pat Egan.  and f r i e n d s : Leah Tonsaker; Art C l a x t o n ;  Lorna Tower; Corky Tower; M y r i l  H a r t h ; Mary Dupuis;  P a t r i c i a F i t z g e r a l d ; K a t r i n Akrami; and Redge Loewen.  My t h e r a p i s t :  Flo O l i v i e r .  I s i n c e r e l y thank Mike Turko, M.D., f i n d i n g the s t u d y ' s p a r t i c i p a n t s , M.S.N.,  R . N . , f o r being e x t e r n a l  f o r a s s i s t a n c e in  and Donelda E l l i s , reader f o r t h i s t h e s i s .  I a l s o acknowledge and s i n c e r e l y thank the f i v e women who p a r t i c i p a t e d  in t h i s  study.  1 CHAPTER ONE INTRODUCTION TO THE STUDY The Of  a l l female  Problem  surgery,  t h e removal  and  sexual  for  women ( K e a v e n y , Hader, M a s s o n i ,  Kolb,  o r g a n s h o l d s t h e most e m o t i o n a l  1977; S t e p t o e ,  known t h a t causes  radical  and  Fisher,  Edwards,  experience body due  However,  t o cancer  (Krouse that  bereavement  factors  which cause t h e s e  necessary.  surgery  and H a c k e r , 1980; S e w e l l  1981).  feelings  symptoms and and s y m b o l i c 1981; S l o a n , of specific  negative  experiences f o rpelvic  Researchers  negative  and K r o u s e ,  prolonged  towards  of the uterus  t o g a i n an u n d e r s t a n d i n g  on t h e s u b j e c t i v e radical  removal  f o rthe functional  In o r d e r  is  cancer  and n e g a t i v i t y  physical  (Krouse  It  on women's body  (Anderson  prolonged  by p e r s i s t e n t  1978).  following  after  and K r o u s e ,  these  meaning o f t h e u t e r u s  research  1986).  i t i s u n c e r t a i n why women  of depression  image even two y e a r s  unresolved  effects  and s e l f - e s t e e m  feelings  be c a u s e d  and S t a n t o n ,  f o rgynecological  negative  1980).  significance  and Wade, 1973;  1979; Lamont and D e P e t r i l l o ,  have s u g g e s t e d may  Horti,  surgery  significant  image, s e x u a l i t y , 1983;  of reproductive  feelings,  o f women  surgery i s  2 The Purpose The purpose of t h i s study i s to develop a descriptive,  qualitative  a n a l y s i s of women's s u b j e c t i v e  experiences and needs f o l l o w i n g r a d i c a l  surgery f o r  gynecological cancer. The T h e o r e t i c a l The t h e o r e t i c a l  framework  Framework f o r t h i s study c o n s i s t s  of f i v e p r i n c i p l e s which were developed 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 developments in t h e o r i e s of discourse,  and power.  language,  In b r i e f ,  subjectivity,  poststructura1ist  theory maintains t h a t the mechanisms of power in s o c i e t y develop through language which a l s o 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 (Weedon,  1987).  Before p r e s e n t i n g the f i v e p r i n c i p l e s of study's theoretical selecting a feminist  framework,  the r a t i o n a l e  the for  approach in r e s e a r c h w i l l  be  discussed. The o v e r a l l  purpose of f e m i n i s t  philosophy i s 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 f e m i n i s t r e s e a r c h , t h e r e f o r e ,  to achieve s o c i a l j u s t i c e f o r women's r i g h t s and a c t i v i t i e s which means changing s o c i e t y ' s power  is  3 relations: Feminism  is a politics  d i r e c t e d a t changing  existing  power r e l a t i o n s i n s o c i e t y .  relations  structure  a l l areas of l i f e ,  education  and w e l f a r e ,  politics,  c u l t u r e and l e i s u r e .  relations  d e t e r m i n e who does what and f o r whom,  1987,  T h e s e power  become  (Weedon,  p. 1 ) .  Another major goal  in feminist  i n v e s t i g a t e women's s u b j e c t i v e socialized The  the family,  t h e w o r l d s o f work and  what we a r e and what we m i g h t  beliefs  which  research  experiences  harm women's  emphasis on s u b j e c t i v e  is to  and e l i m i n a t e  health:  experience i s  essential  t o a research  exploring  t h e way i n w h i c h women make s e n s e o f a  world  l a r g e l y designed  1988,  p.  Pirie  (1988) a l s o  should  take  social  justice  subjective  this  consists  enterprise  committed t o  by and f o r men  (Pirie,  631). states  into account  that  a l l feminist  t h e s e two g o a l s  research  of achieving  f o r women and i n v e s t i g a t i n g women's  experiences.  incorporated for  T h e s e power  within  Therefore,  t h e s e two g o a l s a r e  t h e t h e o r e t i c a l framework  study.  As m e n t i o n e d  previously,  of five  p r i n c i p l e s adapted  this  developed framework  f r o m Weedon's  (1987)  text  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  This  text focuses  by  studying  on a c h i e v i n g  language through  social  justice  theory.  f o r women  the i n d i v i d u a l ' s subjective  experiences. The Framework's (1)  Five  Subjective  Principles experiences,  that  woman makes s e n s e o f l i f e , inherent  i s , t h e way a  have no  meaning b u t a r e g i v e n  meaning by  1anguage. (2)  Language  i s learned  from o t h e r s  a women's s u b j e c t i v e e x p e r i e n c e s which  are s o c i a l l y  ( 3 ) Discourse social,  (formal  speech or w r i t i n g )  which a r e c o n s t a n t l y  vying  power and, t h e r e f o r e , o f t e n  subjective (4)  Language  interests  f o r s t a t u s and give  and c o n f l i c t i n g  is socially  discourse.  and  starting  a woman  versions of  and h i s t o r i c a l l y  Language point  society.  located  i s t h e common f a c t o r  in the analysis of social  meaning, s p e c i f i c a l l y ,  factor  represents  experiences.  in  structure  i n ways  specific.  e c o n o m i c , and p o l i t i c a l  contradictory  and c o n s t r u c t s  how power r e l a t i o n s  I t i s a l s o t h e common  i n t h e a n a l y s i s o f 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 e x p e r i e n c e s , g i v e n meaning by l a n g u a g e , neither  unified  disunity  and c o n f l i c t ;  meaning w h i c h political quo.  theoretical subjective  for  change and t o p r e s e r v i n g t h e s t a t u s from  principles,  experiences  Weedon, which  and, a l s o ,  as t h e s t a r t i n g  power r e l a t i o n s  language, This  effects caused  the study's  t o a n a l y z e women's  t o view  these  point f o r understanding  structure society.  how  A conceptual  diagram  understanding  of the  between a woman's s u b j e c t i v e e x p e r i e n c e ,  and power  (Figure 1).  framework s u p p o r t s  patriarchal  1987).  comprise  t h e framework p r o v i d e s a v i s u a l  relationship  o f s t r u g g l e over  t o the process of  framework, g i v e d i r e c t i o n  experiences  therefore,  but a s i t e of  a site  i s central  (Adapted  These f i v e  nor f i x e d  are,  which a r e  attitudes  developing  i n r e s e a r c h causes  on women's s e l f - i m a g e . the labeling  characteristics as 7  somehow, p e c u l i a r  knowledge on how negative  These a t t i t u d e s  have  and d e v a l u i n g o f c e r t a i n being  a b n o r m a l , u n d e s i r a b l e and,  t o females,  f o r example,  6  F i g u r e 1.  A diagram of the f e m i n i s t framework  theoretical  (adapted from Weedon, 1987).  A WOMAN'S SUBJECTIVE EXPERIENCES are "making sense of  life"  through LANGUAGE  which i s the " s i t e of s t r u g g l e & c o n f l i c t "  due to "social,  economic. & p o l i t i c a l d i s c o u r s e s vying f o r  power"  7 expressions (Chesler, 1977;  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  1972; E i s e n s t e i n , 1983; Goub,  Webb, Such  1985).  labelling  self-image. expressing  has n e g a t i v e  effects  It i s a l s o detrimental emotional  vulnerability  behavior  development  during  (Miller,  loss  analyze  the s u b j e c t i v e experience,  respects  Therefore,  this  the expression  1987).  research  feminist researchers  thought  processes,  devalue  t h e female viewpoint  term  which  includes  s u p p o r t s and  intercourse, the of  An example  yet only  this  u s i n g male  and i d e n t i t y i s t h e word,  describes  that  experience  images w h i c h  used t o d e s c r i b e  female a c t i o n during the penis,  t o avoid  and m e n t a l  i s commonly  In t h i s  and a n a l y s i s o f e m o t i o n s .  directs  This  feelings  i s direction to  l a n g u a g e g i v e s meaning t o t h e s u b j e c t i v e  1984).  since  growth and  In a d d i t i o n , t h e framework's p r i n c i p l e  Vickers,  sexes  part of healthy  1984; P e a r s a l l ,  framework, however, t h e r e  emotions.  t o both  and normal  study's  on women's  and v e n t i n g  r e d u c e s s t r e s s and i s an i m p o r t a n t coping  1985; L y t l e ,  terms,  e x c l u d e and ( S m i t h , 1979;  "penetration."  genital  t h e male a c t i o n .  Since  intercourse i s the "enclosure"  term c o u l d  be used  to include the  female a c t i o n during i n t e r c o u r s e (Spender, In summary, the s t u d y ' s f e m i n i s t framework g i v e s d i r e c t i o n to  1980).  theoretical  investigate  women's  subjective experiences. Research Questions T h i s study focuses on e x p l o r i n g the experiences of women f o l l o w i n g r a d i c a l gynecological cancer.  The author  subjective  surgery  for  s p e c i f i c a l l y wished to  d i s c o v e r how women experience 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 s u r g e r y , as these concepts were common themes in the  l i t e r a t u r e on surgery f o r g y n e c o l o g i c a l cancer  (Anderson & Hacker, Johnson,  1983;  Budd,  1977;  Finck,  1979;  1987).  The r e s e a r c h q u e s t i o n s were: (1)  What are women's p e r c e p t i o n s of t h e i r and needs a f t e r r a d i c a l  experiences  surgery f o r g y n e c o l o g i c a l  cancer? (2)  How do these women experience s e l f - e s t e e m and sexuality  after this  surgery?  The S t u d y ' s S i g n i f i c a n c e One of n u r s i n g ' s goals i s to support when l o s s i n t e r f e r e s needs.  Therefore,  individuals  with the s a t i s f a c t i o n of b a s i c  women who experience the  loss of  r e p r o d u c t i v e and sexual organs due to cancer should  8  9 receive  nursing  satisfaction loss. that for  support  of basic  which p r o t e c t s  needs n e g a t i v e l y  The f i n d i n g s o f t h i s they w i l l  study  gynecological  radical  increase  care. as  f o r a l l women  support  surgery f o r  f e m i n i s t p e r s p e c t i v e has  in that  i tparticularly  women's r i g h t s and a c t i v i t i e s  A feminist perspective  theories  are s i g n i f i c a n t in  cancer.  In a d d i t i o n , t h e s t u d y ' s  to  a f f e c t e d by t h i s  enhance t h e q u a l i t y o f n u r s i n g  women who e x p e r i e n c e  significance  and m a i n t a i n s t h e  and c o n c e p t u a l  in research  aims  in health is significant  f r a m e w o r k s w h i c h grew o u t o f  patriarchal  t h i n k i n g have damaged women's h e a l t h ,  self-image,  and t h e i r  sense of w e l l - b e i n g  their  (Ashley,  1978). Introduction This research  study's  Feminist are  f e m i n i s t t h e o r e t i c a l framework and  questions  phenomenological  research  support  research  research  often  t o Methodology  called  the choice  ofthe  method:  has i n c r e a s i n g l y embraced the "soft  p a r a d i g m s " ; models o f  which emphasize t h e s u b j e c t i v e  cognitive  structures,  biographies, researcher  intuition,  to react  experience,  personal  f e e l i n g s , and t h e a b i l i t y  and s u b j e c t  what  o f both  s p o n t a n e o u s l y and  instinctively each o t h e r  to the topic  (Pirie,  of  without  visible  research  and u n d e r s t o o d ,  analyzing individuals'  of  their  experiences  the subjective  expectations.  The a i m  i s t o make human  behavior  n o t by e x a m i n i n g  by  The  t o study  preconceived  phenomenological  with  1988, p. 6 2 9 ) .  Phenomeno1ogists attempt experience  when i n t e r a c t i n g  specific,  (Benner,  phenomenological  hypotheses,  verbal  but  perceptions  1985).  r e s e a r c h method, t h e r e f o r e ,  a l l o w s t h e d i s c o v e r y o f women's s u b j e c t i v e e x p e r i e n c e s through  analyzing verbal perceptions.  enabled  t h e author  of  s u b j e c t i v e data  described is  them  t o gather  and a n a l y z e  p u r e l y as t h e women  (Ornery,  discussed further  1983).  Surgery  For t h i s  i n Chapter  cancer or  all,  radical  reconstruction  cancer, of  this  radical  Cancer  surgery  f o r gynecological  of the uterus  and some,  Some women have a v a g i n a l  a t t h e same t i m e  D e p e n d i n g on t h e t y p e ,  methodology  o f Terms  i s d e f i n e d as t h e removal of the vagina.  verbally  Three.  f o r Gynecological  study,  l a r g e amounts  This study's  Definition Radical  T h i s method  extent,  as t h e r a d i c a l and l o c a t i o n  surgery.  of the  s u r g e r y may a l s o mean t h e removal  lymph nodes, o v a r i e s , b l a d d e r ,  and lower  bowel  (Falk,  11 1985;  Jakowatz,  Vera,  1981). Radical  was  selected  losing could  1985; L i n d s e y ,  surgery  f o r g y n e c o l o g i c a l cancer  f o rthis  study  t h e v a g i n a as w e l l be e x p l o r e d .  reconstruction without  1985; T a l l e d o , 1985;  so t h a t  as t h e u t e r u s and o v a r i e s  The s u r g i c a l  i s also  the experience of  used  procedure  of vaginal  f o r women who a r e b o r n  a vagina.  After  vaginal reconstructive  must keep a s i l i c o n e t h r e e months. douching.  i s most s u c c e s s f u l thickness  skin  or styrofoam  The mold  The l i n i n g  mold  i n the vagina f o r  i s removed b r i e f l y  each  i t i s taken  from  o r muscle donated  Less  f r e q u e n t l y , t h e a m n i o t i c s a c from  used  until  a triple-  from  a placenta i s  t h e woman grows h e r own l i n i n g ,  which  two weeks.  used,  t h e new v a g i n a s h r i n k s d u r i n g t h e f i r s t  dilation condition  after  Regardless  the thigh.  takes  to a year  surgery,  i s necessary t h e new  and f r e q u e n t  usually  which i s s i x months  intercourse or  s c a r t i s s u e and  lining.  have urostomy  urine or s t o o l .  of t h e procedure  t o reduce  Women who l o s e t h e i r will  day f o r  o f t h e new v a g i n a , o r n e o v a g i n a ,  when  graft  s u r g e r y , t h e women  bladder,  and c o l o s t o m y  lower  bowel, o r both  stomas w h i c h  The stomas a r e o p e n i n g s  empty  on t h e abdomen  which are f i t t e d with p l a s t i c a p p l i a n c e s to excretions.  collect  A urostomy i s made from a p i e c e of bowel  which the u r e t e r s  are a t t a c h e d .  A colostomy i s the end  of the bowel which i s brought up through the abdomen after  the rectum has been removed.  Self-Image Self-image beliefs  i s d e f i n e d as an i n d i v i d u a l ' s  and images about the s e l f .  e f f e c t on o t h e r s ,  beliefs  unique  These i n c l u d e ,  example, o n e ' s body appearance and f u n c t i o n , role,  for  societal  and s t a t e of c o n t r o l .  and images about the s e l f  These  change during  the  l i f e s p a n 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  interactions  i n f l u e n c e d by  with others and language.  (Adapted from Sanford and Donovan, 1985). Se1f-Esteem S e l f - e s t e e m i s d e f i n e d as the p e r c e p t i o n of self-worth  which comes from e x p e r i e n c i n g approval  o n e ' s s e l f - i m a g e from s e l f of s e l f - w o r t h  provides fuel  psychological  growth.  changes due to physical,  and o t h e r s . for  of  The p e r c e p t i o n  self-determination  The p e r c e p t i o n of  self-worth  i n t e r a c t i o n s with others and mental,  and emotional  to  functioning.  (Adapted from Sanford and Donovan,  1985).  and  Sexua1i ty Sexuality desire  i s defined  f o r sexual  usefully  bodily pleasure.  described  from  innate  Sexuality  i s most  a s a u t o - e r o t i c and p l u r a l ,  whole body c a n be t h e s i t e (Adapted  as an i n d i v i d u a l ' s  Irigaray,  of sexual  as t h e  arousal.  1985). Assumpt i o n s  It  i s assumed t h a t  inhibit  women's a b i l i t i e s  perceptions negative radical  societal  of self-worth.  role  expectations  t o develop  and m a i n t a i n  I t i s a l s o assumed  e f f e c t s on s e l f - i m a g e surgery  and s e x u a l i t y , due t o  f o r gynecological  women's d e v e l o p m e n t  that  cancer,  will  inhibit  and m a i n t e n a n c e o f s e l f - w o r t h . L imi t a t i on  Geography on  and t i m e c o n s t r a i n t s  t h e number o f women  included  impose a  in this  limitation  study.  Summary In C h a p t e r and t h e  selection  discussed.  significance described,  the  of  figure for  and  surgery  of  the  limitations for  study. Two i s  surgery  framework  for  a review  framework  The  were d e f i n e d  of  related  gynecological  was  questions,  were p r e s e n t e d . cancer,  and a  study's  practice  research  gynecological  used  radical  theoretical  feminist  methodology,  and s e x u a l i t y ,  Chapter  presented  were p r o v i d e d .  self-esteem, in t h i s  p r o b l e m was  n u r s i n g and f e m i n i s t  and t h e  assumptions  study's  a feminist  Principles  corresponding  radical  One,  The  and  terms,  self-image, as t h e y  were  literature  on  cancer.  CHAPTER REVIEW OF  TWO  LITERATURE  Introduction This  review  of literature  i s o r g a n i z e d under  women's needs and s e l f - i m a g e , s e l f - e s t e e m , and sexuality.  The m a j o r i t y o f t h e s e  publications  contain  t h e common theme t h a t women who  radical  surgery  professional this  support  Several  medical  although  radical  prevents  death,  to successfully  And Women's  specialists  adjust to  surgery  change  Needs  have s t a t e d  that,  f o r g y n e c o l o g i c a l cancer  the quality  of l i f e  depends on each woman's a d j u s t m e n t  after  this  surgery  to a significant  i n h e r s e l f - i m a g e ( L i n d s e y , 1985; T a l l e d o , 1985; 1981).  physicians in  need  1ife crisis. Self-image  Vera,  experience  f o r g y n e c o l o g i c a l cancer  emotional  also  As more women e x p e r i e n c e t h i s  have r e a l i z e d  that  surgery,  the acceptance  s e l f - i m a g e r e q u i r e s emotional  support  o f change  that  i s often  unavailable: Faced are  with  likely  times  t h e a l t e r n a t i v e o f death t o accept  this  only the physical  satisfied  radical  most p a t i e n t s  s u r g e r y . Many  needs o f t h e p a t i e n t a r e  and s h e r e t u r n s home w i t h o u t  emotional  support ( T a l l e d o ,  1985,  P.  181).  Nurses have a l s o d i s c u s s e d the emotional 1979;  support a f t e r t h i s r a d i c a l  Hamilton,  1973;  importance of surgery  Hampton, 1986; W i l e y ,  (Fisher, 1979).  Yet,  planning nursing i n t e r v e n t i o n s to provide t h i s support i s hampered s i n c e the s p e c i f i c needs of these women are unknown.  There i s s p e c u l a t i o n that the reason these  women show no improvement  in l e v e l s of d e p r e s s i o n and  body image a f t e r twenty months i s due to p e r s i s t i n g physical  functional  bereavement  impairment and unresolved  (Krouse and Krouse, 1982).  Nurses who w r i t e  on these women's p s y c h o l o g i c a l needs do not have specific  information and have g e n e r a l i z e d these women's  experiences: A woman who r e t u r n s f o r f o l l o w - u p v i s i t s dressed a t t r a c t i v e l y and without u r i n e and s t o o l odors i s probably an i n d i v i d u a l who i s 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 i s attempting to r e t u r n to her p r e v i o u s a c t i v i t i e s p.  (Hampton,  1986,  285).  Such general assumptions about women's needs following radical reveal  the  surgery f o r g y n e c o l o g i c a l cancer  lack of s p e c i f i c i n f o r m a t i o n .  n u r s i n g research on t h i s t o p i c  In f a c t ,  is a v a i l a b l e .  no  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 , b u t these,  too,  provide  only  general  information  about  these  women  will  women's n e e d s : After  radical  renew s o c i a l being,  surgery contacts,  and r e c o v e r will  positive  image,  body  unlikely  need  all  interests,  (Sanford This negative  previous  is  levels of  image, i n t e r p e r s o n a l  And Women's Needs  of self-worth, after  concern  will  recover  f o r women t o p r o t e c t s e l f - e s t e e m ,  will  radical  an  or the  surgery i s  insufficient  n o t be a b l e  t o a c t i n her  and a woman who has no s e l f - e s t e e m a t  become overwhelmed and Donovan, surgery effects  this  s i n c e a woman w i t h  amount o f s e l f - e s t e e m best  37).  and s e x u a l i t y . Self-Esteem  perception  1980, p.  s t a t e m e n t s a r e c o n t r a d i c t o r y as i t  i n h e r body  relationships,  a major  and Edwards,  relationships,  a t t h e same t i m e s h e e x p e r i e n c e s  deterioration  The  of self-esteem.  interpersonal  t h a t a woman would  self-esteem  levels  also deteriorate in their  s e x u a l i t y (Sewell  These general  cancer  r e g a i n a sense o f w e l l -  previous  However, t h e y  and  for pelvic  and e v e n t u a l l y g i v e up  1985).  i s considered  t o have  on t h e p e r c e p t i o n  considerable  of self-worth  because  it  causes s i g n i f i c a n t  changes in body s t r u c t u r e and  function: Radical surgery f o r p e l v i c cancer i s d e v a s t a t i n g . A woman w i l l  find  it  difficult  to b e l i e v e that  life  can continue with so many anatomic p a r t s removed and w i l l  be r e p u l s e d by the thought of using  a p p l i a n c e s to c o l l e c t body wastes (Hampton, p.  1986,  282).  Furthermore,  the  loss of r e p r o d u c t i v e organs  is  known to have a s e r i o u s e f f e c t on a woman's p e r c e p t i o n of  self-worth: At 44  I s u f f e r e d another  gynecologist  shock to my system when my  i n s i s t e d on removing my u t e r u s .  I  experienced t h i s p h y s i c a l and symbolic i n v a s i o n of my inner b e i n g , my sexual s e l f , of f e m i n i n i t y , world.  as a loss of  of my p l a c e and f u n c t i o n  youth,  in the  These f e e l i n g s were deeply rooted and  t r a n s m i t t e d through my female a n c e s t o r s , generations of E a s t e r n European Jewish mothers,  for  whom the act of g i v i n g b i r t h gave the only a c c e p t a b l e meaning to t h e i r their  lives,  constituting  personal c o n t r i b u t i o n to the s u r v i v a l of a  s e v e r e l y oppressed and persecuted people 1985,  p.  95).  (Siegal,  Therefore,  the loss of reproductive  particularly  inhibits  women who b e l i e v e t h a t self-image desirable Johnson, 1980). belief  i s being  the perception  t o a male p a r t n e r  1982; S a n f o r d  surgery  f o rgynecological to inhibit  women b e l i e v e t h a t punishment  body  cancer  women a p p e a r  Sexual  and H a c k e r ,  dissatisfaction  reduced  body  cancer  (Lamont  having  cancer  reactions (Labrum,  a l s o has t h e p o t e n t i a l of self-worth isa  And Women's Needs  t o experience this  1983; F i s h e r , i s reported  changes,  painful  deterioration in radical  1981).  t o be c a u s e d by intercourse,  and a n x i e t y  o r shame a b o u t The t h r e a t o f  i s also believed to increase  to the loss of reproductive 1978).  surgery  1979; V e r a ,  and D e P e t r i l l o , 1980).  1976; S l o a n ,  when  activity.  genital sensations,  unacceptable  Radical  i n the g e n i t a l area  image and s e x u a l i t y a f t e r  (Anderson  1986).  the perception  Sexuality Most  societal  o f s e x u a l i t y i s shameful  and Donovan,  cancer  f o r sexual  1977; F i n c k , 1979;  i s a l s o t h e common  f e m a l e enjoyment  (Lasky,  therefore,  sexually  e t a l , 1973; Lamont & D e P e t r i l l o  Furthermore, there that  part of t h e female  and b e i n g (Budd,  organs  of self-worth f o r  a significant  a mother  1987; Keaveny  and s e x u a l  emotional  and s e x u a l  organs  20 However, and  increased  life-changing Further sexual  i t i s also sexual  satisfaction  event o f having  subjective needs a f t e r  uterus,  I can f e e l  often  cancer  occur  description after  her vaginal  years a f t e r  and lower bowel sexually  t h e removal  due t o v a g i n a l  arousing  sensations  will  a c c e p t me as a whole, s e x u a l  but I s t i l l  needs a f t e r  researchers  this  surgery  professionals  These r e s e a r c h e r s  believe  question  i f a man  (Stevenson,  1985).  the effects  that  Cairns  the reconstructed chronic  discharge  that  womens' s e x u a l by most  and V a l e n t i c h ,  "normal  enhances t h e s u c c e s s r a t e o f t h i s  and  clitoris  woman  and V a l e n t i c h  which h i n d e r s  i s encouraged  sexual  radical  vagina often  1986).  of routine  f o r example, w h i c h  s u r g e o n s who b e l i e v e  that  cancer:  i n my new  wonder  are not understood  (Cairns  reconstruction,  (Talledo,  of her  p. 1845).  Feminist  by  my s u r g e r y ,  An  i s the following  before  vaginal  1986).  are required.  surgery  like  health  due t o t h e  (Stevenson,  v a g i n a and have an orgasm by r u b b i n g my  1986,  intimacy  this  and e i g h t  vagina,  greater  o f women's s p e c i f i c  f r o m a woman one y e a r  reconstruction  that  explorations  example o f a s u b j e c t i v e quote  suggested  functioning" surgery  (1986) m a i n t a i n  causes severe recovery.  pain  They  criticize  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 t o  i n f o r m women a b o u t t h e s e r i o u s c o m p l i c a t i o n s o f v a g i n a l reconstruct ion. These f e m i n i s t r e s e a r c h e r s medical  profession's patriarchal  sexuality.  to evaluate  reconstructive needs.  That  "functional  the success  surgery  surgery  vagina,  i n t e r c o u r s e with  male v i e w p o i n t  needs. with  these label  a success  women's  sexual  the vaginal  b e c a u s e t h e woman has a pain,  orgasm." phrases,  however, p r o v i d e o n l y a  d e f i n e s and d e v a l u e s researchers  satisfaction  these  which  women's s e x u a l  ask f o r q u a l i t a t i v e  studies  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 t o  develop after  devalues  on f e m a l e s e x u a l  Feminist  for  of vaginal  adequate p e n e t r a t i o n without  These s i m p l i s t i c  narrowly  a b o u t women's  p r o f e s s i o n ' s use of s i m p l i s t i c  i s , some s u r g e o n s  reconstructive  or  beliefs  C a i r n s and V a l e n t i c h (1986) b e l i e v e ,  example, t h a t t h e m e d i c a l phrases  also c r i t i c i z e the  a female d e s c r i p t i o n  this  Bernhard,  radical  surgery  o f women's s e x u a l  needs  ( C a i r n s and V a l e n t i c h , 1986;  1986).  Two p u b l i c a t i o n s p r o v i d e descriptions  of these  autobiographical  essay  a few s u b j e c t i v e  women's n e e d s . by a s t u d e n t  One i s a c a n d i d nurse  after  surgery  for  vaginal  collection female  cancer of  (Burger,  w r i t t e n answers t o  intimacy  after  many t y p e s  second p u b l i c a t i o n ,  the  surgery  for  cancer  hollow;  as  genital if  as p e o p l e was concluded that  the  lost" there  is  their  of  cancer.  In  a need f o r for  about this  experienced  identities  1987).  surgery  a  a questionnaire  d e s c r i b e d "a f e e l i n g  (Johnson, is  The o t h e r  women who had  core of  on women who e x p e r i e n c e cancer.  1981).  This  of  being  as women and author  qualitative  research  gynecological  Summary This  literature  significant following is  r e v i e w shows t h a t  women  p s y c h o l o g i c a l and p h y s i c a l  radical  also evident  surgery  that  for  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  the  female r o l e  l o s s of  cancer.  experiences  are  and t h e  problems  gynecological  t h e s e women's  experience  and  and needs  images  reproductive  It  about  and  sexual  organs. However, emotional Present  specific guidelines  support  for  r e s e a r c h on t h i s  information  and  experiences  and n e e d s .  surgery  sexuality,  incorrect  emotional  women a r e  unavailable.  provides only  assumptions about  Therefore,  perceptions  these  professional  subject  causes s i g n i f i c a n t  functioning;  In  these  for  negative  of  radical  on p h y s i c a l  self-esteem,  inadequate  and  professional  support. it  is  clear,  b a s e d on  speculations  and a s s u m p t i o n s f o u n d  review,  a qualitative  that  experiences  Three  their this  effects  self-image,  women r e c e i v e  conclusion,  subjective  although  general  and needs information  d e s c r i b e s the  is  a n a l y s i s of  required  for  in the  to  literature  women's  provide  professional  phenomenological  the  use.  research  specific, Chapter method  used  in t h i s  subjective following  study  to gather  descriptions radical  and  of t h e i r  surgery  a n a l y z e women's experiences  and  needs  f o r gynecological cancer.  CHAPTER THREE METHODOLOGY Phenomenological Research Phenomenological r e s e a r c h methodology study the human e x p e r i e n c e .  i s used to  This methodology  developed  from a p h i l o s o p h i c a l movement which opposed the  practice  of studying humans with the same research methods used for  studying objects: S c i e n t i f i c r e s e a r c h methods had been developed to explain object experience.  phenomena; not the s u b j e c t i v e  Many r e s e a r c h e r s s e a r c h i n g f o r  a l t e r n a t e methods, e s p e c i a l l y realized  human  in psychology,  t h a t the phenomenological method had value  f o r understanding and e x p l a i n i n g the human experience.  The goal of t h i s method, t h e r e f o r e ,  is  to provide an accurate d e s c r i p t i o n of the s u b j e c t i v e human experience Jn her a r t i c l e ,  (Ornery,  1983, p.  51).  "Phenomenology: A method f o r  n u r s i n g r e s e a r c h " , Ornery (1983) d e f i n e d the p r i n c i p l e s of phenomenological methodology. researcher smell,  In t h i s method the  not only uses data which she can s e e , hear,  and t o u c h ; she a l s o uses s u b j e c t i v e  descriptions  of meanings and f e e l i n g s that the experience has f o r both h e r s e l f  and the i n d i v i d u a l  being s t u d i e d  (Ornery,  1983).  She  attempts the  accepts  to clear  a l l data  expect  her mind o f a l l p r e c o n c e i v e d  phenomenological  duplication  from  r e s e a r c h e r does other  themes w i t h i n d a t a w h i c h studies.  She  also  can  does not  framework t o p r e - o r g a n i z e organizes  d a t a as t h e y  participants'  natural  Participants  and  ideas of  s t u d i e s but be  c r e a t e an  data,  language  but  p o p u l a t i o n from  express  study  and  physiological feelings. studied,  p.  language,  1983).  sample o f s u b j e c t s i s  t o speak w i t h  guilt  must u n d e r s t a n d  and  express  t h a t accompany the  experience  or  and  or  and  feeling  the  these  experience  p r e f e r a b l y at a recent date, in the  ease i n  must u n d e r s t a n d  without  experiences  being  be  (Ornery,  60).  F i v e women who part  and  sampling:  They must have had  interested 1983,  analyzes  s h o u l d meet g u i d e l i n e s  which the  inner f e e l i n g s  inhibitions,  further  overlying  (Ornery,  research  researcher's  describes  compared w i t h  drawn must have t h e a b i l i t y the  not  are r e c e i v e d ; p r e f e r a b l y in the  of the  phenomenological The  take  are r e c e i v e d  experience. The  for  as t h e y  in t h i s  met  these  criteria  phenomenological  agreed  study  to  on s u b j e c t i v e  experiences  and needs f o l l o w i n g r a d i c a l  gynecological  surgery f o r  cancer. Selecting the Participants  The  p a r t i c i p a n t s were a t l e a s t t h r e e months  post-  surgery so t h a t they had r e c o v e r e d enough t o p a r t i c i p a t e and had 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 on s e l f - i m a g e and 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 were s e l e c t e d o n l y i f they had a f a v o r a b l e prognosis to avoid the negative e f f e c t s of dealing with spreading All  cancer. p a r t i c i p a n t s had l i v e d a t l e a s t f i v e years i n  North American s o c i e t y and had s u f f i c i e n t E n g l i s h t o provide clear descriptions.  The p a r t i c i p a n t s a l s o had  to l i v e w i t h i n a day's car travel that personal  i n t e r v i e w s c o u l d be  from the r e s e a r c h e r  so  arranged.  With the a s s i s t a n c e of a Vancouver surgeon,  the  f i v e w o m e n 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  contacted  and  to  informed  about  the study.  A l l f i v e agreed  p a r t i c i p a t e and r e c e i v e d a consent  form  (Appendix  A)  which o u t l i n e d the study's purpose  and t h e r i g h t s o f  research p a r t i c i p a n t s . A general d e s c r i p t i o n of these participants  i s found  at the beginning of Chapter  Ethical  Considerations  Before these p a r t i c i p a n t s were c o n t a c t e d , t h e  Four.  University Research the  of  aspects  participants subjects,  were  of the  informed  i n c l u d i n g the kept  participants'  researcher. thesis  Since  were o n l y  was  emotional  type  ethical  to the  of  the  research identities  this  with  names to  so  the  and  her  interview tapes  such and  as  and  age,  family  described.  study.  For  given  to  the  example,  there  when d i s c u s s i n g i n t i m a t e the  participants.  supportive  their  e n v i r o n m e n t which  during of  phenomenological  the  the  interviews.  Data research  or  The  b e n e f i t from e x p r e s s i n g  would p r o v i d e  the  coding  researcher  surgery,  Collection Using  approved  t h e s i s c o m m i t t e e b e l i e v e d , however,  w i t h i n the  researcher  the  c o n s i d e r a t i o n was  experiences the  by  were known o n l y  generally  p a r t i c i p a n t s would  feelings  as  that t h e i r  information;  for sensitivity  s u r g e o n and the  and  b e n e f i t s of  a need  and  number o f p a r t i c i p a n t s was  identifying  statistics  and  Committee f o r  example,  rights  maintained  access the  date  risks  of t h e i r  identities  ethnicity,  Further  For  assurance  was  c o m m i t t e e had  other  reviewed  study.  In a d d i t i o n , o n l y  transcripts. small,  Screening  confidential.  Confidentiality the  Columbia's  I n v o l v i n g Human S u b j e c t s  ethical  would be  British  method,  the  that  researcher purely  attempted to  as t h e y  expectations researcher  of  what would  women t o  they  words,  the  method  in t h i s  using the  not  of  of  experiences  individuals'  Furthermore,  valid  that  in the  Therefore, order  to  In  specific,  subjective and  development  the  study's all  of  of  research  and show b e l i e f  offered  most r e a d i l y  sharing  and t r u s t  method  relevant  of  the  and  meaning.  typed  These into  rapport  with  develop  i n each woman's  1983).  in  verbatim  unique  descriptions  an a t m o s p h e r e  (MacPherson,  the  perceptions  descriptions.  since subjective  within  by  were t a p e - r e c o r d e d  women's  attempted to  reality  visible  but  research  are  scientific  analyzed.  participants  and  other  including all  insights,  transcripts  The r e s e a r c h e r  detailed  data,  interviews the  The  1985).  were s u b s e q u e n t l y  and  hypotheses,  phenomenological  memories  of  1983).  experiences  phenomenological  (Benner,  the  all  include  perceptions  (Ornery,  as s i g n i f i c a n t .  tape-recordings  the  preconceived  a v o i d a s s u m p t i o n s by  by e x a m i n i n g  analysis  participants'  experiences  s t u d y was t o make human b e h a v i o r  and u n d e r s t o o d ,  specifies  without  describe those  perceived  aim o f  women's  be f o u n d  a l s o attempted to  needs w h i c h  these  d e s c r i b e d them,  encouraging the  their  study  In  of  are  reciprocal  addition,  the  researcher and  helped  t h e women f e e l  needs were s i g n i f i c a n t  give  detailed  Furthermore, detailed  that their  which a l s o  descriptions of their the p a r t i c i p a n t s  experiences. likely  questions,  and open-ended q u e s t i o n s  interviews;  listening,  c l a r i f i c a t i o n of during the  f o r example:  "You  said  "So,  you a r e s a y i n g t h a t you w e r e n ' t  the  you f e l t  recovery  needing The  shocked...?"  period,  "What were y o u r  i s that  of data  i n t e r v i e w s as t h e p a r t i c i p a n t s  a useful,  However, d a t a  beginning  radical  researcher  collection  second  their  f o rthis  transcripts  and needs  f o r gynecological cancer.  for this  study  t o produce  of experiences  t h a t two i n t e r v i e w s w i t h  enough d a t a  to  developed  to describe  description  surgery  found  contradictions  o u t about  c o u l d have e x t e n d e d  ended when t h e r e were s u f f i c i e n t  The  right?"  the surgery?"  collection  experiences.  prepared f o r  r e a c t i o n s when you f o u n d  a w a r e n e s s and a g r e a t e r a b i l i t y  produced  to offer  d e s c r i p t i o n s when t h e r e s e a r c h e r used t h e of r e f l e c t i v e  after  e n c o u r a g e d them t o  were more  techniques  several  experiences  The  each woman  purpose.  i n t e r v i e w was used and c o m m o n a l i t i e s  t o expose  i n the data.  For  example, their  four  women d e s c r i b e d  diagnosis  In h e r s e c o n d specifically The and  interview, asked  that  during  the f i f t h  therefore,  interviews.  woman was  i f she a l s o f e l t  the content  t o share  the f i r s t  this  reluctance.  t o add f u r t h e r  of the f i r s t  what t h e y meant t o e x p r e s s .  interviews, of  others  women were a l s o a s k e d  confirm  actually  with  a reluctance  increased  insights  interview  These  was  second  the internal  validity  common themes among t h e women's e x p e r i e n c e s  after  surgery. Analysis Phenomenological collecting  of Data  researchers  believe  that  subjective d e s c r i p t i o n s of r e a l i t y  knowledge a b o u t agree that  human b e h a v i o r .  analyzing  Feminist  subjective reality  adds  valid  researchers  produces  valid  know 1 edge: ...I  do n o t s u b s c r i b e  necessarily carried  stems f r o m d e t a c h m e n t  of the r e a l i t y  I s i d e with  understanding involvement, p. x x ) .  that  knowledge  and measurement,  o u t f r o m some f i c t i v e A r c h i m e d e a n  "outside" Rather,  to the b e l i e f  under  consideration.  t h o s e who b e l i e v e  springs  from  immersion,  and committment  point  that from  empathy,  ( E i s e n s t e i n , 1983,  Knowledge d e v e l o p e d f r o m t h e subjective practice  data  especially  relevant  as n u r s e s t r a d i t i o n a l l y  subjective Benner,  is  Ornery,  data  necessarily  1983).  However,  rigorous,  analyzing  nursing  an  individual's  (Anderson,  in a phenomenological  lengthy,  to  assess  needs when p l a n n i n g c a r e  1985;  analyzing  process of  the  1981;  process of  study  is  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  their  and t h e n  totality  categories  to  researcher  then  t h e s e major  capture  categories  are  gain  in  conceptual the  data.  The  to  reliability 1983,  additional  same p a r t i c i p a n t s .  for  invites  issues  f r o m Ornery,  major  essence of  by u s i n g  explained  has meaning  study's  the  categories with the  researcher  creates  transcripts  r e d u c e s , c o m p a r e s , and expands  interviews  which  typed  These  using everyday  others.  language  Finally,  the  those with experience offer  for p.  their  the 57).  insights  in  the  in order  study's findings  to  (adapted  Summary The p h e n o m e n o l o g i c a l this  study to  from  large  also  compatible  method, during  r e s e a r c h method was c h o s e n  provide  guidelines  for  amounts o f  subjective  data.  large  with a f e m i n i s t  amounts o f  interviews  with  and o r g a n i z e d  as a means t o  communicate t h i s  women's e x p e r i e n c e s for  gynecological  Four.  from the  three  study's  and needs f o l l o w i n g  this  gathered  These  major  is  data  categories  findings radical  on surgery  cancer.  A d i s c u s s i o n of examples  into  Using  d a t a were  participants.  were a n a l y z e d  meaning  T h i s method  perspective.  subjective  five  developing  for  the  three  research data  major are  categories presented  in  and Chapter  C H A P T E R FOUR R A D I C A L S U R G E R Y FOR  GYNECOLOGICAL CANCER  WOMEN'S E X P E R I E N C E S AND  NEEDS  Introduction O v e r 10 h o u r s  of recorded  interviews with  5  p a r t i c i p a n t s were t r a n s c r i b e d and t h e n a n a l y z e d . study's  f i n d i n g s were then developed  categories with  sub-headings:  I.  About Having  F i n d i n g Out 1. S e n s i n g 2. R e a c t i n g  To The C a n c e r  3. N e e d i n g S u p p o r t 4. U n d e r s t a n d i n g I I.  P h y s i c a l Recovery Gynecological  From The  Wrong  Diagnosis  Surgery  After Radical Surgery  Bladder  Strength  Problems Reconstruction  After Radical Surgery  Gynecological  Cancer  1. B e l i e f s A n d  F e e l i n g s About  3. P e r c e p t i o n O f  provided  For  Cancer  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  General  For  Cancer  3. V a g i n a l H e a l i n g A n d III. Self-image  Cancer  Others  1. N e e d i n g T i m e t o R e g a i n 2. B o w e l A n d  into three major  Gynecological  T h a t S o m e t h i n g Was  The  Function  Self-Worth  i n f o r m a t i o n about  before the study's  the p a r t i c i p a n t s is  findings are  discussed.  The F i v e women t o o k experienced the the  first  surgery  ages o f  the  surgery,  part  radical  interview.  radical  were 2 7 ,  were r a i s e d  in t h i s  surgery  12 t o  before  the  at  the  time of  31,  39,  40,  in Canada,  One woman d i d not  and  living  active  work,  single  i n her  with t h e i r and  and  partners'  and  20 y e a r s  living  1 was a s t u d e n t experience  radical  Three  women  10 y e a r s  One ago,  ago.  Two women were 1 was  children,  alone.  2 were m o t h e r s careers,  The  3 had young  and c h i l d r e n , and her  the  1 in A s i a .  nursing  children.  parents  career,  described their this  partners  w i t h her  d i v o r c e d or  before  interview.  experiencing  have c h i l d r e n ,  and 1 had a d u l t  w i t h male  18 months  first  1 in Europe,  and one had p r a c t i c e d m i d w i f e r y  living  F o u r women had  and 66 y e a r s .  woman had p r a c t i c e d p r o f e s s i o n a l  children,  study.  One woman had e x p e r i e n c e d  4 years  women,  Participants  divorced and 2 were  One woman was and a l s o a s s i s t e d  1 was r e t i r e d  and m o t h e r .  from  her  F o u r women  with sexual  intimacy  after  surgery. T h r e e women were d i a g n o s e d w i t h v a g i n a l  these  three,  2 women had had v a g i n a l  the  same t i m e as t h e  radical  did  not  reconstruction,  have v a g i n a l  reconstruction.  surgery.  cancer.  reconstruction  Of at  One woman,  who  was p l a n n i n g  for  One and  woman was d i a g n o s e d  had e x p e r i e n c e d  a hysterectomy required the  two m a j o r  cancer  of the cervix  surgeries.  and t h e s e c o n d ,  a partial  bladder.  with  vaginectomy  The f i r s t  was  due t o m e t a s t a s e s , and removal  of part of  T h i s woman d i d n o t have v a g i n a l  reconstruction. One also  woman was d i a g n o s e d  with  cancer  of the uterus  had two s u r g e r i e s due t o m e t a s t a s e s .  hysterectomy vagina  and t h e n ,  and b l a d d e r  s e v e r a l months  removed.  She had a  later,  had h e r  She d i d n o t have v a g i n a l  reconstruction. All also  5 women had t h e i r  had o v a r i e s removed  uterus  and a l s o  removed.  had r a d i a t i o n  treatment.  Two o f t h e s e women were t a k i n g  replacement  medication.  The major  women's e x p e r i e n c e s  and needs  estrogen  in the three  c a t e g o r i e s a r e d i s c u s s e d and compared w i t h  literature.  The  and r e s e a r c h e r .  first  descriptions experience cancer.  related  The a b b r e v i a t i o n s , "P" and "R," s t a n d f o r  participant  four  T h r e e women  major  category  of events  of finding  and f e e l i n g s  from  t h e women's  surrounding  their  o u t about h a v i n g g y n e c o l o g i c a l  Their experiences  sub-headings.  developed  and needs a r e p r e s e n t e d  under  37 I.  FINDING OUT  The under  women's e x p e r i e n c e s  four  That  Prior had  to the cancer  foul  the vagina. first to  S o m e t h i n g Was  physical  bleeding,  One  From t h e r e sorts  treatment.  P:  But  I was  the  was  Pap  test  symptoms c a u s e d  and  The  t h e r e was  lumps i n as  the  t h e women  For v a r i o u s r e a s o n s ,  4  d e l a y between g o i n g f o r  being  t o t r y and  four times.  diagnosed:  clear  penicillin up  doctor  and  these  finally  q u i t e a b i t , and  doctor's saw she  sent  the g y n e c o l o g i c a l r e s i d e n t . pregnant cyst  actually  whenever  cancer  c y s t s or  I must have been back a t t h e  meanwhile t h i s it  abnormal  a significant  of s t u f f  something, t o see  as abnormal v a g i n a l  I went f o r weeks b e i n g on  infections.  me  an  These p h y s i c a l  a d v i c e and  t h r e e or  d i a g n o s i s , 4 women n o t i c e d t h a t  woman had  o b t a i n medical  all  presented  Wrong  symptoms s u c h  women e x p e r i e n c e d  P:  needs a r e  v a g i n a l d i s c h a r g e , and  symptom.  medical  and  headings:  1. S e n s i n g  they  ABOUT HAVING GYNECOLOGICAL CANCER  so t h e D & C was kept  growing  p r o t r u d i n g out  "Hey,  said,  "Nothing's  and  growing  of the  I e x e r t e d p r e s s u r e , and  said,  put o f f ,  vagina  I went back  s o m e t h i n g ' s wrong," and  again  wrong," but when t h e y  until  and  they  removed i t ,  38 s o m e t h i n g was wrong. felt  this  cyst  t h r o u g h my somehow,  this  entire  This feeling  body.  intuitively,  just so  was t h i s  went  cold  with their P:  feelings  their  that  acknowledge i t ,  terror  I couldn't  and f e a r ;  my  warm up; I was  all body just  and so a f r a i d .  O t h e r women a l s o intuitive  swept  I touched i t ,  have known  I didn't  time I  terror  The s e c o n d  incredible  ice-cold;  of cold  I must  s o m e t h i n g was wrong. I felt  one p a r t i c u l a r  health  remembered  that  having  uncomfortable,  s o m e t h i n g was s e r i o u s l y  even b e f o r e  wrong  c a n c e r was s u s p e c t e d by  physicians: I actually doctors  knew.  the  doctor  for  several  birth bad felt  knew s o m e t h i n g was wrong b e f o r e t h e A little  about  myself,  she thought  (through  I started  It got r e a l l y  went t o t h e d o c t o r and  and s h e j u s t  pill."  discharge. inside  i t because t h i s  months  control  b i t of spotting  that  the vaginal  that  this  said,  some s t r a n g e t h o u g h t s  feel some  was r e a l l y  So I  anything stool there  afraid,  and i n f a c t  i n t h e months  and I  a lump.  I knew t h a t  was s e r i o u s ,  really  smelling,  feel  I was f e e l i n g wall).  "Oh, i t ' s t h e  t o get t h i s  and s h e c o u l d n ' t  s o m e t h i n g r e a l l y wrong...I certain  had been g o i n g on  foul  and I c o u l d  and I t o l d  was I was  I had  preceding  that.  I remember a s k i n g just  had t h i s  my d o c t o r  funny  about  sense t h a t  r e a s o n why I w o u l d n ' t be a b l e don't  know how t o e x p l a i n  really I'm  healthy,  sure she checks every  feelings in  I've a l w a y s looking  a t the time t h a t  t h e women  However,  have been known t o l a b e l  by T h o r n e  woman r e c a l l e d  prior that  she might  thorough  with  have c a n c e r ,  examination only  hypochondriac'  it;  now.  was  sensed  intuitive F o r example, communication  described:  an i n c i d e n t t h a t  t o her d i a g n o s i s  for  health  (1986), t h e f o l l o w i n g  between a woman and h e r p h y s i c i a n "One  been  f o rphysicians to  as f e m a l e h y s t e r i a o r c r a z i n e s s .  a study  I  one o f h e r p a t i e n t s  s o m e t h i n g was s e r i o u s l y wrong. professionals  was some  t o have k i d s .  wasn't  It may n o t have been p o s s i b l e diagnose the cancer  there  that.  s o my d o c t o r  i n f e c t i o n s , and I  had o c c u r r e d  cancer.  Suspecting  she requested a  t o be c a l l e d  by h e r p h y s i c i a n "  a  (Thorne,  'crazy 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 s h a r e their  intuitive  f e e l i n g s with  women b e l i e v e t h a t  they  physician's  As R o b e r t s  are  time.  i n doctors'  should  most t r o u b l e  s e e n as making e x c e s s i v e  physicians  s i n c e many  n o t t a k e up t o o much o f a (1985) p o i n t s  category  demands.  out,  "Women  because they a r e  There  i s a deeply  embedded  n o t i o n i n most women t h a t  'bother'  the doctor"  (Roberts,  A woman's i n t u i t i v e previous  t o be c o r r e c t .  not  o n l y sensed  intuitive  P:  1985, p. 7 ) .  feelings  c o u l d be t r i g g e r e d by  F o r example, one woman  something  feelings  were r e l a t e d  who d i e d from  One t i m e when  I went  my d o c t o r t h a t everytime did  tissue  samples,  it  to  to ride  I have a l i t t l e  When t h e y  is...I  then  b l e e d i n g so they  take  biopsy a  a little  b i t o f your  said  i s something  just  there  they  i s something  wrong, t h e n  knew, t h a t ' s what  I went t h e r e  I was a l m o s t  her l i v e r know,  same t h i n g ,  and i n a few months a feeling  deeper wrong,  t h a t ' s what  s u r e s h e was g o i n g  i t i s , and i t was.  i t ' s just  don't  i t i s (cancer.)  mine, t h e same age, had b r e a s t c a n c e r  don't  a h o r s e and  d i d a deeper  I knew t h a t  s a y t h a t ' s what  into  I mentioned t o  i t i s , t h e y want t o have some more  i fthere  When  f o r a Pap smear  and i t comes back and t h e y  know what  and  T h i s woman's  cancer:  Then t h e y  later.  "knew"  t o her experience with a  I was l e a r n i n g  I ride  a biopsy.  month  breast  turn  i n the study  was wrong, s h e a l s o  t h e d i a g n o s i s would be c a n c e r .  friend  shouldn't  e x p e r i e n c e s , n e v e r t h e l e s s , t h e y may s t i l l  out  that  they  and i t g o t  she was gone.  that  b u t n o t i n my b r e a s t .  A friend of  I have t h e  I  Before the actual women's i n t u i t i v e  d i a g n o s i s o f c a n c e r was  feelings  wrong were p a r t i c u l a r l y descriptions cancer  sensitive  professionals (1988) s t u d y  s u p p o r t i v e communications  from  time  cancer  are confirmed  suspect  cancer  1988,  p. The  told  that  extensive time  therefore,  need p a r t i c u l a r from  health  sensitive even  types of  need f o r health  in Thome's  commmunications.  become v u l n e r a b l e and and,  seriously  women's  The  on  communications'  The  anxiety.  at t h i s  and  perhaps  individuals  was  even s u s p e c t i n g a d i a g n o s i s o f  extreme f e a r  and  something  significant.  showed t h a t  caused  that  made, t h e  "Individuals when t h e y  undiagnosed 'cancer  professionals"  (Thorne,  171). women a l s o  described their  t h e d i a g n o s i s was surgery.  Their  reactions  cancer which  required  e x p e r i e n c e s and  a r e d i s c u s s e d under t h e n e x t  to being  heading.  needs a t  this  42 2.  R e a c t i n g To The C a n c e r The  women's r e a c t i o n s  Diagnosis t o being t o l d  c a n c e r were  influenced  their  coping behaviors  usual  severe s t r e s s . shock, P:  fear,  They  grief,  all,  been s i c k  I told  myself,  chemotherapy just  i n my  because  waiting  f o r your  of  eyes;  Such greatest diagnosis caused  office  i t ' s like  just  never  what  i t does.  time  that  o t h e r major  take I'd  you're  disappearing in front  torture.  a r e t o be e x p e c t e d . alarm  The  i s caused  d i s e a s e s (Knopf,  o f t h e women were a l o n e  cancer.  treatment  by a of alarm  1976).  in a physician's  room when t o l d  that  they  The women d i d n o t p e r c e i v e r e c e i v i n g  support  from  woman d e s c r i b e d t h a t  the physician  she f i n a l l y  diagnosis while driving o f f i ce:  That  of psychological  or a hospital  emotional  was s h o c k i n g .  o f c a n c e r when compared t o t h e d e g r e e  by f o u r  Four  been s c a r e d ; I've  so t h i s  I've seen  death;  feeling  from o t h e r s :  I've n e v e r life,  c a n c e r and  o f sudden and  however, d e s c r i b e d  that.  intense feelings degree  i n times  t h e y had  about  i f i t r e o c u r r e d , I would  leave i t l i k e  your  beliefs  and i s o l a t i o n  It's a scarey thing; never  had  by t h e i r  that  home from  who t o l d  them.  One  r e a c t e d t o the cancer the physician's  P:  It j u s t  d i d n ' t h i t me  in the o f f i c e .  t h e way home t h o u g h , and s t a r t e d and  just  just  " I t ' s my e n d . "  cancer.  cancer.  had  I t was a c o l d  about i t ,  died of i t ;  thing; pill  "You have  you c a n g e t some  me."  woman was t e l e p h o n e d  cancer.  a t home and t o l d  t h a t she  However, she d i d n o t r e a l i z e t h e  seriousness of the cancer  diagnosis until  the s p e c i a l i s t ' s  Once t h e r e , h e r f i r s t  emotional  office.  reaction  was t o b e i n g t o l d  c o n t i n u e her pregnancy. ability  p h y s i c i a n misunderstood  d i s e a s e , she f e l t  and  then  P:  the reason  emotional  that  because  of the c e r v i x ,  i tout.  a blow  " I t ' s cancer,"  I wasn't  i t never  even o c c u r r e d t o me an e a r l y  and I t h o u g h t  I t wasn't u n t i l  appointment with and  the seriousness of  sensation like  i t was more s e r i o u s t h a n  cancer cut  upset  and t h e  shock:  When he phoned me and s a i d , really  i n h i b i t e d her  f o r her emotional  realized  a physical  intense  she s h o u l d not  the physician,  When s h e s u d d e n l y  the  s h e went t o  that  This reaction  t o communicate w i t h  distress.  I was on  I d i d n ' t know a n y t h i n g  I f you need a n e r v e  i f you c a l 1 One  thinking  t h e knowledge t h a t my f r i e n d  felt;  about  When  they  could  just  I had t h e f i r s t  the s p e c i a l i s t  s a t down and s t a r t e d  case of  to t e l l  and he w a l k e d i n me t h a t  i t was  I  very had  serious;  t o make was  pregnancy. to  have  my  mouth,  me  have  and  thought, serious  "Oh,  said,  I'll  Your And  that  statistic, on my  but  "Would  my  third  as t h o u g h  get the  t r y , he  i t had  I went  are about my  a statistic  and  into  and I  shock.  l o n g you  said as  that.  have the he  He  statistics; become a  t o be t h a t  h e r e gave me  even  i n B o s t o n , and  you'll  i t d o e s n ' t have  you  never  50/50, a f t e r  doctor  h e r e had  long  even more  you want t o know how  I phoned  looked  i t h i t me,  i s something  chances  able  someone had  because  t h a t ' s when  this  doctor  I be  you want t o know how  the doctor  you  decision I  e v e r y t i m e I opened  " T h e r e a r e no s u c h t h i n g s tell  Later  and  I t h o u g h t , " and  "Oh,  surgery."  said,  no,  than  mad  after  It f e l t  mind, and  "Oh  live?  was  t o ask,  i n t h e stomach,  c r o s s e d my  first  to cry, I couldn't  Finally, said,  k i c k e d me  to  trying  I started  The  o r n o t t o c o n t i n u e my  any more b a b i e s ? " ,  to l i v e ? "  They  deadly.  whether  I was  words o u t . at  quite  way."  a 70/30 c h a n c e o f  1i v i ng. The  women a l l had  either  memories a b o u t t h e manner the  cancer diagnosis.  communication  n e g a t i v e or  i n which  Thome's  neutral  physicians  told  them  (1988) s t u d y on  i n c a n c e r c a r e showed t h a t  cancer  patients  usually  remember  professionals "Unhelpful  168). into  as b e i n g  area  frequently  time.  are those perceived  i s required health  as  beyond what  seemed  (Thorne,  1988, p.  further  research  (1988) c o n c l u d e s t h a t  communications with  t o understand  why  negative  professionals  a r e so  recalled:  Patients  do r e c a l l  important  health  care  c o m m u n i c a t i o n s as  aspects of the cancer  t h e communications  unhelpful. of  at t h i s  under t h e c i r c u m s t a n c e s "  this  health  impeding o r d e m o r a l i z i n g  Thorne  of  "unhelpful"  communications  frustrating, necessary  communications with  There  they  experience  recall  are decidedly  i s some e v i d e n c e t h a t  a p a r t i c u l a r communication might  interpreted  during  experience...it  and many  t h e meaning  be v a r i o u s l y  d i f f e r e n t phases o f t h e cancer  seems o b v i o u s t h a t  an i n a d e q u a t e  knowledge b a s e e x i s t s f r o m w h i c h t o g e n e r a t e communication perspective The choice For  p r i n c i p l e s that  i n t o account  women s p e c i f i c a l l y  take t h e p a t i e n t ' s  (Thorne,  the cancer  example, one woman s p e c i f i c a l l y used t h e t e r m  171).  r e c a l l e d the physician's  o f words when e x p l a i n i n g  physician  1988, p.  diagnosis.  r e c a l l e d that the  "inoperable"  to describe the  cancer: P:  I t was a b i t o f a shock when  I first  found out t h a t  I had c a n c e r .  wasn't t h a t g r e a t , inoperable,"  I guess h i s E n g l i s h  The s p e c i a l i s t ; and he s a i d ,  and t h a t p r o b a b l y  "Well, i t ' s wasn't t h e b e s t I s a i d , "Are  c h o i c e o f words f o r somebody t o u s e . you  trying  and  said,  He  to tell  me i t ' s t e r m i n a l ? "  "No, I w o u l d n ' t  n e c e s s a r i l y say t h a t . "  I had t o have r a d i a t i o n  said  He h e s i t a t e d  before  they  would  operate. After  being  immediately  told  they  Four women r e a d  libraries.  found  d i a g n o s i s , t h e women  needed t o know more a b o u t  upcoming s u r g e r y . hospital  the cancer  They  about t h e i r  cancer  and t h e  books f r o m c i t y o r  described that the information  cancer  was h e l p f u l  but a l s o  f r i g h t e n i ng: P:  They had a l i s t  of cancers  t h a t were b e s t  radiation;  and I had squamous c e l l  was  high  fairly  I read  a macrobiotic  some t h i n g s statistics the  on t h e l i s t ,  i n there. on c a n c e r  h e l p e d by  cancer,  and t h a t  s o t h a t was good.  book, and I  looked  through  They had some r e a l l y of the vagina,  awful  or cancer of  c e r v i x ; s o I c l o s e d t h a t q u i c k l y and p u t  away;  l i k e we won't be p a y i n g  And  i t  any a t t e n t i o n t o  them. From o t h e r individuals  look  s t u d i e s , i t i s known t h a t most f o r more  information very  soon  after  learning cancer  that  is often  misunderstood felt  they  have c a n c e r .  difficult  (Morra,  increased  anxiety  information  in l i b r a r y  P:  point  At  one  everything and  read  it  scared  find  1988).  For  and  me  can  example, one  confusion  the  cancer  surgery and  from  about  I could  wanted t o c l o s e t h e  I tried  i t , but  book and  from r e a d i n g  T h i s woman's s i t u a t i o n  that  postponed  surgery  baby's b i r t h . traumatized own.  She  f r o m her P:  Her  of  for vaginal  for several  information the  radical  However, t h i s  when she  d i d not  get I  a  i t in  just i t , and  I  library  cancer  could  was  unusual  weeks u n t i l  p h y s i c i a n , t h e r e f o r e , may  to withhold extent  that  want t o know.  involve.  possible  out  library  f o r g e t about  actually  decided  find  i t , so I  I could  surgery  born.  to  I found out  book, what r a d i c a l  baby was  the  l i v e f o r a year;  A n o t h e r woman r e a l i z e d ,  she  woman  I went t o t h e  I d i d n ' t want t o know  really  on  be  more t o know more a b o u t  organ, or  didn't  and  information  books:  everything  stopped. this  to  before  about  However,  this  have  about  until  the  after  the  emotionally  information  r e c e i v i n g emotional  p h y s i c i a n at t h i s  I s t a r t e d t o do  surgery  woman f e l t  found out  recall  f r o m her  her  on  her  support  time:  some r e a d i n g ,  that's  how  I found  in  o u t what t h e s u r g e r y was g o i n g t o b e .  It said i n  t h e book t h a t they remove your b l a d d e r , c e r v i x , v a g i n a , p e l v i c lymph nodes, your rectum.  uterus,  a n d maybe  even  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 what y o u ' r e g o i n g t o do t o me?" in a very matter  And he s a i d ,  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 what we're going t o do."  B u t no 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 confirmed  it.  I j u s t hung up t h e phone a n d went  and threw  up.  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 no n o t i o n , a n d i t was a g r e a t shock.  There had been  nothing d e f i n i t e spoken o f ,  I w a s 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 checked. that  and being  They were hoping t h a t they would  i t was much l e s s t h a n t h e y t h o u g h t ,  find and that  they c o u l d be more c o n s e r v a t i v e . T h e women m a y h a v e p e r c e i v e d h e a l t h c a r e communications  t o be c o l d and 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 time because emotional  these communications  support as well as factual  the intensely uncomfortable  d i d not include information. Yet,  f e e l i n g s which  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 support at this The need T h o m e ' s ( 1988)  the diagnosis emotional  time.  f o r emotional  support  i s c o n f i r m e d by  finding that i n d i v i d u a l s with  cancer  perceive these  h e a l t h care communications  communications  supportive. by  " H e l p f u l communications  beyond what  circumstances"  needed t o f e e l treat  are those  perceived  that  emotional  immediate a c t i o n One woman was  need met  and r e d u c e  I got the r e s u l t s  and t h e y  go t o t h e C a n c e r C l i n i c said, expect  "No, me  i t can't  ranted  for  me  The  hardest  t o do.  under t h e  was  until  t o go i n t h e n e x t  t h e women  being  taken t o  able to act a s s e r t i v e l y her emotional  distress:  weren't  t o l e t me  be a week,  and r a v e d  support,  going  f o r another  t o do i n t h e n e x t  and  first  necessary  or  1988, p. 168).  t o needing  the cancer.  to get t h i s  seemed  (Thorne,  In a d d i t i o n  week and I  like  what do you  week?"  I stood  t h e y made an  day.  there  appointment  I had f e a r  at  first.  p a r t was w a i t i n g between t h e t i m e  diagnosed As soon  when  a r e p e r c e i v e d as e m o t i o n a l l y  t h e p a t i e n t t o be c o n s t r u c t i v e , e n c o u r a g i n g  supportive  P:  t o be " h e l p f u l "  to finding as  o u t what t h e y  I got t o the c l i n i c  were s c h e d u l i n g my  radiation;  s o m e t h i n g was  being  directiveness  that  done. I was  then  going  and  I felt  T h e r e was  were  I was going  they like  this  t o g e t b e t t e r and  stronger. A n o t h e r woman was before  her s u r g e r y  told  t h a t she had t o w a i t  c o u l d be booked.  8 weeks  She d e s c r i b e d  this  waiting that  p e r i o d as  she  waiting during  her  recovery  took  time  and  me  how  a week or  but  long wait, cancer,  But  don't  alone.  to wait  I had  then  less  positive  i t s possible I got  going  feeling  on  holidays.  understand, be  if  done as  soon  as  does  time my  t o get  daughter  after  so  and  the use  this  place  would  long a  be  wait,  good.  d e s c r i b e d an  was  surgery  another  d i d n ' t want t o  upset  t h a t they  women a l s o began t o t h i n k  After  they  i t ' s b i g , and  the time  were f a i r l y  the  the  d o c t o r s was  s u r g e o n who  It gave me  I felt  w h i c h was  P:  then  i t should  have t h e  else. too,  During  before  help  i t ' s a team t h a t works t o g e t h e r  reconstruction,  ready,  home-making  t o do  I couldn't  a  anybody  commented  2 month  were g o i n g  It was  possible.  for  to arrange  of the  they  but  The  t o become c a l m e r  they  two,  somebody has  They  delay.  6 weeks b e c a u s e one  if  with,  place:  They t o l d in  to deal  a l s o appreciated the p e r i o d gave her  surgery P:  difficult  for surgery,  about d y i n g ,  that their  even when  cancer  would  i n c r e a s e d awareness of  be  life  the  they cured.  and  grief  loss: to the  to die;  that  waited  I was  clinic, like  a  being  I got  the  l o t , but very  well  feeling  I a l s o got looked  that I the  after,  and  that  dealing  I probably with  i t ; doing  visualization like  the  first  wouldn't  to  this  Will  after  confidence father  will  I be h e r e  I wasn't this  going  t o do t h i s  listen  6  f r i g h t e n i n g ; but  I think  I came t o a p o i n t life.  of dying then  t o because  woman t h o u g h t  about  having  i n her a b i l i t y  Somehow,  I kind of  about  cancer,  h e r own  she a l s o  to recover.  ago from  I might!  that  having  cancer  cancer  death  felt  Even t h o u g h h e r  t h e p h y s i c i a n s were u n c e r t a i n a b o u t felt  there  I wasn't g o i n g t o , b u t I d i d n ' t want t o  had d i e d 5 y e a r s  still  For  I have t o  I've had a good  I wasn't so a f r a i d  learning  I c o u l d do.  I t was p r e t t y  i f I did die,  Although  only  much more t i m e  frightening.  panicky  that  f o r me t o do  I'd be s i t t i n g  not  say  she  "How  concert?  knew t h a t  I felt  few weeks i f I'd go t o a c o n c e r t I  now?"  when  that  the things that  months from  where  I was  of t h e Simonton's.  important  be l i s t e n i n g ;  thinking;  to die.  a l o t o f r e a d i n g on  techniques  i t was r e a l l y  something;  wasn't g o i n g  and she knew her p r o g n o s i s ,  d i d n o t a l w a y s mean  dy i ng. Another her  ability  recent  woman, however, had l i t t l e to recover  experience with  from  cancer.  a friend  confidence in  She s t a t e d  who d i e d from  that a  breast  cancer fatal.  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 Even though  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  good, she f e l t c e r t a i n t h a t having cancer always  meant  dy i ng: P:  T h e y t o l d me t h a t t h e c a n c e r w a s  localized,  not very deep, and they c o u l d n ' t f i n d e l s e , s o t h a t was good news. o f my r o o m a n d t h i n k , " W e l l ,  B u t I w o u l d come o u t 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 much l o n g e r . " young and i t d i d n ' t take expected.  them very  died  any f r i e n d s o r  I k n e w t h a t I'm n o t g o i n g t o s e e  long anyway.  me w h a t i t w a s , I f e l t , here f o r another  My f r i e n d  long; s o t h a t ' s what I  I j u s t d i d n ' t need  anybody because  i t anywhere  W h e n my d o c t o r f i r s t  told  "Well,  be  I ' l l probably  year, and that'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 about  recovery from cancer.  describe and express order t o reduce  these thoughts  They needed t o and f e e l i n g s i n  fear and anxiety before surgery.  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 surgery for  i s also significant since there i s a  (Matthews and Ridgeway,  before  tendency  emotionally distressed patients t o recover  slowly from surgery  The  more  1981).  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 sometimes f e e l i n g that t h e diagnosis and plans f o r  surgery were u n r e a l .  They were aware that  reality  emotional  reduced t h e i r  d i s t r e s s about  cancer and the upcoming r a d i c a l P:  It's  just  not happening to you; how could i t There were f e e l i n g s that  at night  and I would t h i n k ,  had to r e a l l y  "Was that a dream?"  think and r e a l i z e  that  was probably the hardest before the i s a common r e a c t i o n to s t r e s s ; however,  that emotional P:  It  support  happened l i k e  most of the t i m e ,  indicator  time:  w a i t i n g f o r my  away.  radiation  came along f o r the r i d e with  And I guess I went in to  t h e r e f o r the r i d e ;  it  surgery.  i s a l s o an  with t h a t same kind of f e e l i n g  as w e l l ;  surgery I was  I was there to be with  person who was going to have t h a t . a l 1 the  was hard;  because I was pushing i t  I just  somebody e l s e .  It  not a  was happening to somebody e l s e  When I was in t h e r e , treatments,  it  it's  I  intense  i s needed at t h i s it  happen  I would wake up  dream and I have to deal with i t .  psychological  having  surgery:  to you?  Denial  denying  It  just  the  gets r i d  of  fear.  One woman a l s o s t a t e d t h a t ,  s i n c e she d i d not  feel  "ill,"  denying the s e r i o u s n e s s of the cancer was easy.  Denial  helped her to b e l i e v e that the surgery would not  really  happen.  She d e s c r i b e d how c o n f r o n t i n g  the  r e a l i t y of her s i t u a t i o n caused feelings of t e r r o r . experienced waiting P:  mood s w i n g s f r o m a n x i e t y  period between diagnosis  I believed  end...that  it.  could  a treatment.  were going  this;  I really  i t w o u l d n ' t come t o t h a t  they  they  surgery:  I wouldn't have t o go t h r o u g h with  believed that  bad;  t o calm during the  and  m a y b e t h a t ' s how I d e a l t w i t h  She  inthe  t o t e l l me i t w a s n ' t a s  j u s t do a watch and w a i t I r e a l l y thought  instead of  I was g o i n g  t o cure  i t o n my o w n , I t h o u g h t ; " I ' m p o s i t i v e e n o u g h , strong  enough,  honestly "You  I'm g o i n g  t o conquer t h i s thing."  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  have t o do t h i s . "  r e a l l y going  I didn't think  t o happen.  On o n e s i d e  i t was I was  a f r a i d , t e r r o r i z e d , and then on t h e  other  I was t h i n k i n g ,  was g o i n g was h a r d  "Nonsense," because I  through t h e motions o f normal f o r me t o g r a s p  I  said,  completely side  I'm  that r e a l i t y ;  living.  It  everything  seemed so normal. These f e e l i n g s o f u n r e a l i t y and d e n i a l were s i g n i f i c a n t since they  could contribute  decision t o avoid treatment. delayed  medical  follow-up  fear of the disease would increase  O n e woman  and treatment  and concern  her serious  also  t o a woman's dangerously because of her  that radical  family problems.  surgery Denial  may  have c o n t r i b u t e d t o her m i s u n d e r s t a n d i n g  of  the  physician's explanations: P:  The  cancer  was  specialist ^  thing  in the beginning  put me  to k i l l  a g a i n but  me  for 2 years  and  back."  then  I got  t o your  said  starting.  I was  couldn't  after  he  it. told  very  freezing  1 year So,  me  he  monitored  that  scared.  examined  I must  He  said,  f a m i l y d o c t o r ; d e c i d e , and  I d i d n ' t go  specialist  The  program, t h a t  i t didn't k i l l  a hysterectomy. go  this  t h e c e l l s and  me  should  on  stages.  t o my  i t was  have "You  come  f a m i l y doctor because  not m a l i g n a n t ,  the  just  i n a depression at that  time; I  d e c i d e t o have t h e o p e r a t i o n ; so  I just  waited. Although cancer  this  woman had  p a t i e n t s 10 y e a r s  the r e p e r c u s s i o n s t h a t family She were  and  not  Her  radical her  emotional  surgery,  this  that  distress  compounded  by  long-term  about  cells to  f o r almost  cancer  dangerous  her  her  knowledge.  the cancer  d e p r e s s i o n about  effects  about  have on  seems u n l i k e l y  having  for this  with  anxiety  professional  for delaying follow-up  were t h e main r e a s o n s The  her  s u r g e r y might  have u n d e r s t o o d  i n a s e r i o u s s t a g e , but  t h e main r e a s o n  as a n u r s e  previously,  work o u t w e i g h e d  a l s o may  worked  and  be  1 year.  radical  family  life,  delay.  of the p s y c h o l o g i c a l trauma  which  results  from being t o l d about  cancer and needing r a d i c a l trauma  s u r g e r y a r e unknown.  may c o n t r i b u t e t o t h e f i n d i n g  gynecological  This  t h a t women w i t h  cancer have prolonged problems  regaining emotional Krouse,  having gynecological  with  s t a b i l i t y after surgery (Krouse and  (1982).  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 support  from others a f t e r being t o l d t h e cancer d i a g n o s i s . need  i s d i s c u s s e d under  t h e next  heading.  This  57 3.  Needing The  from  Support  From  women needed  others after  Although  they  physical  being t o l d  received  example, r i d e s  Others and e m o t i o n a l  the cancer  adequate  diagnoses.  physical  to the h o s p i t a l ,  support  support, f o r  homemaking, and p h y s i c a l  nursing  c a r e , most o f t h e s e women d i d n o t appear t o  receive  adequate  P:  emotional  I had t o e x p r e s s  support  from o t h e r s :  a l o t o f emotion  in the last  18 months; a l o t had t o come o u t . a very p r i v a t e , expressing cool  sort  o f shy p e r s o n ;  extreme f e e l i n g s  and composed.  the emotional me, b e c a u s e  Essentially, not given t o  t o people  No e f f o r t  I'm  and, u s u a l l y ,  was made t o d e a l  s i d e o f i t , and t h a t ' s what  with  concerned  t o me, t h a t was t h e most s e r i o u s  part  of a l l . One support  reason was t h a t  emotionally P:  f o r not r e c e i v i n g having  withdraw  I tried  t o h i d e my  when  don't  want t o s h a r e  In  feelings  I have a p r o b l e m ,  way b e c a u s e  feeling  cancer often  but they  addition,  caused  emotional t h e women t o  from o t h e r s :  that,  this  adequate  i t with  I expect  as u s u a l .  like  I want t o be a l o n e ; I anybody.  people  c a n ' t know u n t i l  t h e women o f t e n  I'm  I'm  silly  t o know what I tell  them.  d i d n o t ask f o r  I'm  emotional remain  support  emotionally  especially P:  because they strong  family  that  and n o t w o r r y  a b o u t my  daughter  must be a f a i r l y  sickness  anything  fear, not  strong  or anxiety.  worrying that  others  but denying  members  h e r own  Psychoanalytic  that  they  should  i s mainly  there  The p a t h  about by t h e  one o f c a r i n g f o r  needs:  writings  insisted  caused  in the middle of t h i s was a need  to healthy  to the experts,  adult  f o r female  self-  femininity,  was paved w i t h  Everyone e l s e  in the family  themselves,  and s h e l i v e d  f o r them  This  be  sadness,  sacrifice.  English,  has  I d o n ' t want them t o  i s probably  the female r o l e  according  because I  However, t h e women's c o n c e r n  belief  denial.  I guess I  I'm n o t as s i c k as I am.  w h i c h means n o t showing  family  century  ones I  me.  individuals believe  emotionally  it.  f o r that  I d o n ' t want t o l e t them know;  Many  others;  t o anybody, n o t  about  good a c t r e s s  a l w a y s p u t on an a c t t h a t  about  must  o r s o n ; t h e y were t h e l a s t  would have t a l k e d  worry  they  members:  I never t a l k e d even my  felt  selflived for  (Ehrenreich  and  1978, pp. 269 - 2 7 0 ) .  persuasive  and i n f l u e n t i a l  c a u s e d women t o f e e l  that  medical  a central  part  discourse of the  female own.  role  This belief  asking P:  particularly  f o r emotional  support  close  still that The support about  a person  treated  can help themselves  i f they  They  l i k e people  tell  like  people  people. talking  women's b e l i e f s  differently  believed want t o .  t o ask f o r e m o t i o n a l  believed  to talk that  with  others  t h e y m i g h t be  o r even r e j e c t e d  i f others  to feel  sorry  I don't  l i k e sympathy.  about that  me, s o I  t h e y would be t r e a t e d  t h e r e may be a l i n k  and e x c e s s i v e and u n n a t u r a l  Feelings  of stigma  has been  behavior,  with  However, t h i s  sexual  experts  have  activity:  likely  when  unacceptable  cervical  p r o m i s c u i t y (Maguire, specialist  o f shame  between g y n e c o l o g i c a l  socially  e.g.; t h e c l a i m t h a t  t o sexual  Medical  are expecially  linked  I don't  me.  gynecological cancer.  that  cancer  about  by o t h e r s may be due t o f e e l i n g s  having  due  ago. I  I always  differently,  don't  described  families:  the cancer.  I don't  The  from  I can help myself.  cancer.  one's  my husband b e c a u s e he was  women a l s o were u n a b l e  knew about  cancer  their  b e c a u s e t h e y were r e l u c t a n t  pitied,  women  t o a heart attack 2 years  believe  having  about  inhibits  from  I d i d n ' t want t o b o t h e r very  P:  i s t o p u t t h e needs o f o t h e r s b e f o r e  cancer i s  1985, p.  100).  on t h e p s y c h o l o g i c a l  effects  of cancer  cervical had  cancer  mentioned  although having  i s due  it.  this  go on  Due  t o such  " c l a i m " i s not  t o be  withdrawal  a major  from  has  they  I was  want them t o know. that  developed.  there  shame a b o u t  differently, and  me.  feel  sorry  having  c o u l d not  Individuals also  who  due had  emotional  psychological  f o r me,  have f o u n d  that  family  alters  and  a year  after and  gynecological cancer.  and  may  during t h i s  cancer  to  maybe  to repressing intense fear  are e m o t i o n a l l y c l o s e  effects  I  they're going  and  p r o v i d e adequate emotional  support  that  friends.  t h e women's f r i e n d s  become d i s t r e s s e d  don't  wrong w i t h me.  I feel  n o t want t o be  surgery  In a d d i t i o n , often  stigma  emotional  just  want t o have  i s something  me  radical  from  I didn't  I  miserable.  I don't  treat  it.  T h i s woman became e m o t i o n a l l y d i s t r e s s e d the  experts,  This  f o r some women's  really  want them t o p i t y  me  from  a stigma  would t a k e  don't  reject  statements  he  others:  anyone;  feeling  the c l a i m that  promiscuity after  factual,  reason  I d i d n ' t know how tell  to r e f u t e  to sexual  g y n e c o l o g i c a l cancer  appears  P:  d i d not  not time.  o f c a n c e r on generates  communication  be  f a m i l y members support.  to cancer p a t i e n t s able to  provide  S t u d i e s on family  the  functioning  great anxiety within a patterns, roles,  and  relationships 1988,  among  p. 3 1 3 ) .  cancer  i t s members  (Lewandowski  The women r e c a l l e d  d i a g n o s i s caused  emotional  that  and J o n e s ,  finding  distress  out the  f o r family  members: P:  The w o r s t had  thing  to t e l l  f o r me was when  everybody.  My husband  " W e l l , what d i d s h e t e l l worst  possible  thing,"  you?",  him t h a t  felt  t h e same way b e c a u s e  going  i t ' s cancer  scared f o r myself, t o happen t o them  My husband t o l d tell  anybody.  and I s a i d , "The to cry.  and I guess  my  he was c r y i n g but I d i d n ' t  i f something  one o f o u r f r i e n d s , I just  came, and s a i d ,  and I s t a r t e d  told  wasn't  I came home and I  I  husband too. I  know what's  happens t o me. but I d i d n ' t  wanted t o be by m y s e l f  and I  c r i ed. One woman e x p e c t e d from She  h e r husband felt  rejected  Due t o t h i s further P:  ok,  she was r e l u c t a n t  support  I'll got  me and t e l l  don't  support support.  and h u r t when he d i d n o t c o m f o r t h e r .  worry,  me,  husband  t o p u t h i s arms  " E v e r y t h i n g ' s g o i n g t o be  n o t h i n g ' s wrong, y o u ' l l  be t h e r e f o r y o u . " i n t o bed t h a t  t o expect  from o t h e r s :  A l l I wanted was f o r my around  emotional  b u t he c o u l d n o t p r o v i d e t h i s  rejection,  emotional  to receive  night,  And he d i d n ' t  be ok,  do t h a t .  and he moved o v e r  to the  We  far  s i d e and  went it,  into  like  trying  doctors  had  told  me,  do  i t on my  on  and  own,  what  know how  you  you."  can  cancer, very  and  first  and  take  very  I had  time,  his inability  need their P:  him  for radical  emotional  had  was no  clammed  surgery  concerned  completely  have them t e l l  me  "It's  live  independent  was  head  we're a l l h e r e to  to  for  with  from  the  t h a t her  and  husband's  needs a t t h i s  to comfort  her  The  stressful  caused  cancer  became a m a j o r  behavior  her  to  diagnosis  factor  in  and  ending  relationship: a b o u t me  i d e a o f how up  i t , not  t o p u t my  how  my  that  decision  never  just  i t easy,  emotionally.  a l r e a d y unhappy He  when  day.  h i s own  from  I made t h e  t o become  reflected  withdraw  and  I realized  difficult;  T h i s woman u n d e r s t o o d  but  me.  these  to deal with  I wanted t o do;  was  kicked  t o someone, even t h o u g h t h a t  relax,  That  or  what  t a k i n g h e l p , but  someone's s h o u l d e r  ok,  again, I  I couldn't believe  I wanted h e l p  family.  over  And,  h i t me,  h i s back on me,  husband, not my  so b a d l y  but  t o deal with  didn't really  myself  bad,  someone had  my  giving  as  so h a r d  husband t u r n e d people  h i s back on me.  s h o c k , not  I felt  I was  turned  and  he  to deal with  became c o m p l e t e l y  d i d c a r e ; he i t , so he defensive  just and  just  protective by my  of himself  condition  so t h a t  and t h e s i t u a t i o n .  knew t h e m a r r i a g e was o v e r . love,  not with  he w o u l d n ' t be h u r t As a r e s u l t I  I didn't  him; he f r i g h t e n e d  me;  want t o make he s c a r e d  me;  he made me a n g r y . A n o t h e r woman d e s c r i b e d her P:  partner  at t h i s  being  emotionally  time:  I had t o g e t i t o u t , I knew t h a t . live,  I had t o g e t i t o u t .  really  b i g surgery;  was s l a t e d  abused by  I figured  I was r e a l l y  f o r b o t h bags.  In o r d e r t o i t was a  nervous because I  I was a t home a l o n e ,  well,  w i t h my d r u n k e n husband,  think  t h e s c r e a m s were m o s t l y a t him, b e c a u s e he  annoyed me so much. would  "Never m a r r y Health  My husband a sick  up.  said  Maybe t h a t  I  I gave  me  to his friends,  woman."  professionals  women a b o u t t h e i r  I screamed.  I had so much t o f a c e .  s c r e a m a t him t o s h u t  some r e l i e f .  when  d i d n o t a p p e a r t o ask t h e s e  sources of emotional  support  until  p r o b l e m s became o b v i o u s : P:  The d o c t o r "Tell tell  you?  said,  that  you t e l l  ask me."  y o u r husband  they  should  me?"  I said,  I'm n o t g o i n g t o  I've g o t a d r u n k e n  another t h i n g  question  didn't  You d i d n ' t  the world  That's  "Why  husband.  do; have e v e r y b o d y  o r have t h e husband  go i n  together; history; The  t h e home l i f e find  t o a delay  was  concerned  She  d i d not t e l l  malignancy  P:  o u t t h e whole  support  i n treatment  h e r husband a b o u t  at this  time  f o r t h e woman who destroy  her f a m i l y .  her p o s s i b l e  8 months b e f o r e  returning for  follow-up:  I was s c a r e d  a b o u t my f a m i l y .  I was i n a bad  between my husband  and me, s o I c o u l d n ' t  d e c i d e on t h e o p e r a t i o n ;  I d i d n ' t want t o wreck my  family.  I was d e p r e s s e d  at t h a t time,  couldn't  decide,  having  an a f f a i r  thought,  maybe  my husband,  so I j u s t  medical  I'm s u p p o s e d  just  one o f my  treatment.  a rapidly  immediately addition, then  her  vagina  spreading  My husband was  to die.  improved, time  cervical  required radical  later,  I didn't  so I tell  friends. she r e t u r n e d  s h e was  malignancy  r e q u i r e d a hysterectomy  which  and r a d i a t i o n .  the cancer  surgery  diagnosed  In  returned.  w h i c h removed p a r t o f  and b l a d d e r .  Two days p r i o r intensely  At t h i s  s e v e r a l months  She  waited.  so I  and e v e r y t h i n g made me u p s e t ,  When h e r f a m i l y s i t u a t i o n  with  picture.  t h a t t h e s u r g e r y might  and w a i t e d  situation  for  be p u t i n t h e  lack of adequate emotional  contributed  medical  should  to the radical  distressed.  surgery  s h e became  Her s p o u s e became f r i g h t e n e d and  gave h e r e m o t i o n a l this, he  support  s h e had n o t a s k e d  had n o t  support,  P:  I decided  When sleep  couldn't last and  stand  I cried  operation,  loudly.  Then  cry  long time, crying night.  When  scared;  he t h o u g h t  felt  like  just  And  It  I was  up i n t h e m i d d l e o f t h e  I was g o i n g  very  to t r y suicide.  I stepped  He had n e v e r  I walked  I  do i t  i n t o t h e house  s e e n how u p s e t I  by m y s e l f  but I c o u l d n ' t and c r i e d .  t h a t n i g h t t h a t my husband was  scared,  been n i c e r t o me.  i s known t h a t  difficulty  to  I walked a  I walked.  A c t u a l l y , I wanted h e l p  so t h a t ' s why  he's  anyplace  I came back my husband was  hugged me.  after  find  I wanted  s u i c i d e t h a t n i g h t , but I couldn't  was b e f o r e . ask,  husband  and I c r i e d .  know where  b e c a u s e o f my c h i l d r e n . he  I couldn't  s l e e p , and I came o u t  I s t a r t e d t o walk,  mixed  level:  2 days b e f o r e t h e  but I c o u l d n ' t  and I d o n ' t  and v e r y  day; my  One n i g h t ,  s a t down on t h e s t a i r s loud,  emotional  operation,  every  I couldn't  c r y very  f r o m h e r s p o u s e , and  t o a dangerous  f o r the last  it.  Prior to  r e t u r n o f t h e cancer, her  had b u i l t  at night;  time.  Due t o t h e l a c k o f  and t h e r e p e a t e d distress  to  f o r comfort  offered i t .  emotional  f o r the f i r s t  expressing  individuals vulnerable  with  cancer  feelings  who  have  t o others, or  are not i n a s i t u a t i o n support  from  where t h e y  others, are at risk  can r e c e i v e emotional f o r d e v e l o p i n g a major  depress ion: High  risk  characteristics  who commit emotional  suicide, distress  networks. patients  Negative  f o r example, and l i m i t e d beliefs  pain.  One from held, and  having  P:  and V a l e n t e ,  someone  look a f t e r  I had a f o r m e r charge  by b e i n g  errands  from  578).  emotional  t h o s e who d e m o n s t r a t e d  and hope about  and e s c a p e  i s ignored,  1988, p.  She r e c e i v e d s u p p o r t  being with  attitude  fears,  as t h e o n l y e s c a p e  woman d e s c r i b e d r e c e i v i n g  friends.  support  make i t d i f f i c u l t f o r  When d e p r e s s i o n  p a t i e n t s may v i e w s u i c i d e (Saunders  include high  personal  t o seek h e l p , e x p r e s s  emotional  pain  of cancer p a t i e n t s  and  support physically problems,  a positive  her p r o g n o s i s :  b o y f r i e n d who was w o n d e r f u l ;  he t o o k  o f e v e r y t h i n g and was t h e r e t o h e l p me and  s u p p o r t me.  He was a l w a y s t h e r e , and i t was easy  to  him.  talk  with  face that  like  friend to  positive; the  he a l w a y s showed me was s t r o n g ,  "You're going felt  He was t o t a l l y  t o be f i n e . "  I didn't feel  I had a l o t o f p e o p l e  positive; alone, I  h e l p i n g me.  A  gave me t h e S i m o n t o n ' s book, and she t o o k  her church;  i t was b a s e d  on t h e power o f  me  positive The freely to  thinking.  women a l s o  express  others.  needed  their  found  when t h e y  good.  s u p p o r t which  feelings  Y e t , they  uncomfortable  She was r e a l l y  of fear,  a l l o w e d them t o  anger,  t h a t most p e o p l e  attempted  and g r i e f became  t o express  intense  emot i o n s : P:  Nobody  really  liked  talking  e x p e r i e n c e was t h a t  people  about liked  i tthat  and c o u r a g e o u s  didn't  want me t o be any o t h e r way b e c a u s e t h e  second  I showed t h a t  see  I was f r a g i l e ,  was c r a c k i n g  i t because  they  their  with  I was  strong  something  and d e a l i n g  i t . My  inside,  didn't  feeling  they  it.  They  and t h a t didn't  want t o  want t o d e a l w i t h i t .  When  I feel  o f , "Ok, i t ' s enough,"  then  I become d e f e n s i v e about  i t and w i t h d r a w  myse1f. Expressions others P:  feel  People Or  don't  really  grieving;  all.  felt  g e t o f f on w a t c h i n g  they  My f a m i l y  were t o l d  doesn't  grief,  that  around  you g r i e v e . you when  have no u n d e r s t a n d i n g  t h e women o f t e n  intense fear,  moment t h e y  seemed t o make  uncomfortable:  Although they  particularly  they're not comfortable being  you're at  of grief  of  i t  c r y v e r y much.  suppressed  their  feelings,  and a n x i e t y f r o m t h e  t h e d i a g n o s i s was c a n c e r and  that  radical  s u r g e r y was  necessary.  confronted  with  fertility,  as w e l l  sexuality,  body-image, and  Confronting emotional P:  My  possible  sure  said  physical  loss  of  and  I was  in the h o s p i t a l . l o t more d e e p l y  losses  q u i t e emotional  they  I'd g e t r e a l l y  caused  sensitivity:  They s a i d than  to  independence.  of t h e s e major  vulnerability  upset;  the  suddenly  as t h e upcoming s u r g e r y ' s t h r e a t  the r e a l i t y  friends  death,  They were  while  I  was  things affected  me  a  had  upset.  before. I'm  #  When  I'd  much more  get  calm  now. These f e e l i n g s sensitivity emotional was  also  prevented  support.  obvious  suppressed  of emotional  t h e women f r o m  and  asking for  From t h e women's d e s c r i p t i o n s , i t  t h a t most o f t h e i r due  vulnerability  to the  intense feelings  lack of adequate  were  emotional  support. The  women a l s o  understand lessen  t h e upcoming r a d i c a l  their  occurred  d e s c r i b e d needing  a n x i e t y and  during  recovery.  be  to  surgery  prepared  clearly in order  f o r problems  to which  4.  Understanding The  had  The S u r g e r y  2 women who had m i d w i f e r y  greater  knowledge a b o u t  and n u r s i n g  the surgery's  effects;  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 understanding fuller  the surgery.  explanations  physical It serious  They needed  about t h e s u r g e r y ' s  and e m o t i o n a l i s known t h a t  individuals  encouragement t o e x p r e s s the disease  P a t i e n t s with condition  stigmatizing,  c l e a r e r and e f f e c t s on  diagnosed  with a  i n f o r m a t i o n r e p e a t e d and  themselves  and i t s  diagnoses  could  gaps i n  health.  d i s e a s e need t o have  understand  education  i n order  to fully  treatment:  which  implied  be l i f e - t h r e a t e n i n g ,  or c h r o n i c a l l y  their maiming,  i n c o n v e n i e n t ; and  where t h e e x c h a n g e o f i d e a s 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  i n s t a n c e s o f t h e phenomenon o f m i s i n t e r p r e t a t i o n , that  i s , where t h e p a t i e n t ' s i n t e r p r e t a t i o n  she/he was t o l d  differed  or more key p o i n t s . four  from t h e d o c t o r ' s  o f what on one  F u r t h e r m o r e , more t h a n  p a t i e n t s c o u l d n o t make c o r r e c t  one i n  biomedical  s e n s e o f t h e "key p o i n t s " o f t h e p h y s i c i a n ' s explanations The for  (Tuckett, Boulton,  women s p e c i f i c a l l y  how t h e r a d i c a l  surgery  and O l s o n ;  described being would  1985, p.  unprepared  change t h e i r  body  36).  structure  and  reactions, P:  function,  and  cause  They s a i d  intense emotional  prolonged  I'd be  2 weeks, and  cause  physical  in the h o s p i t a l  then,  after  6 t o 8 weeks a f t e r  my  that,  hospital  I g o t up  exhausted to  my  and  and  and  and  he  i t would t a k e  then One  g e t my  how  said  anger  the prolonged  recovery period  glad it  I kept  only  I'd in  be  was  soon  was  So  that  unusual, to  I figured  out  very  had  her not  kept  angry  of  knowing her  that  and,  lack  hopes  they  about up:  didn't  i n o t h e r ways,  I'm  i f I'd known a t t h e b e g i n n i n g how i t might  thinking; this  another weeks and  will  sense  have seemed  be  healed; surely I ' l l be  weeks and "It will  i t was  longer.  " I t c a n ' t be t o o much  week and  keep t h i n k i n g ; that  i t wasn't  that  i t more t h o r o u g h l y  because  pretty  it  I was  I  in the  I mentioned  about  rationalized  would t a k e ,  was  that  be  I was  hair,  said  take.  but  In some ways  when  s t r e n g t h back.  l o n g i t would  10 days t o  6 months f o r me  about  woman e x p r e s s e d  explain  But  washed my  understanding  P:  I would  went back t o bed.  surgeon  really  from  I t h i n k they  surgery  a b l e t o go back t o work.  weakness:  good.  As i t longer,  i t will  h e a l e d " , and  weeks. o n l y be  But  long  yet  e v e r y week  another  week";  T h i s woman a l s o commented not  ask  many q u e s t i o n s  mean t h a t she example, she length P:  of  her  I was  recovery  believed  and  then  so t h e y  they  i t later,  not  didn't give  and  having  just  more  what  i t t o me."  know t h a t  I did a  but  not  No  the  with.  just  then  think  realize  one  The  layperson  can  go  My  experience  read  with  I  thought, Maybe  I'm  not  that I  k i n d of  reconstruction; there's about or  doctors  was  not  and  for i t ,  a  the  time  questions,  the  about.  I  enough a t t h e  and  and  now,  even b r o a c h e d  proper  l o t of reading.  out  me  I knew n o t h i n g ? "  informed  asking  me  information,  And  don't they  to start?  and  the  I d i d n ' t ask  p e r c e p t i o n ; they  I was  the  given  i t would a f f e c t  t h i n k i n g , "Well,  know how  about  as i f  had  have t o d e a l  even t h i n k o f  I had  I wish  fine;  I'd  questions,  though  be  what  asking  to  I would  and  their  not  For  operation  how  that's  did  I honestly  but  don't they  subject  i n , have t h i s  i n f o r m a t i o n , not  "Well,  don't  misconceptions  be,  I kept  this  did  effects.  would  later,  resented  surgery's  f o r 3 weeks.  happened.  more t h o r o u g h procedure  go  3 weeks  had  surgery,  she  period:  hospital  I would  2 or  nothing  the  significant  i n the  within  about the  understood had  that, although  even  cancer lot a  find  out  that  they  didn't them;  tell other  me a n y t h i n g than  t h a t , they  me, and t h a t was i t . q u e s t i o n s on. probably the  I just  had n o t h i n g  asked  examined t o b a s e my  t h a t a t t h e time  i n s h o c k and p r o b a b l y  T h i s woman a l s o  caused  I deliberately  saw me; t h e y  And I r e a l i z e  information  understanding  unless  w o u l d n ' t have  I was taken  in. specifically  the anatomical  d e s c r i b e d not  changes t h a t t h e s u r g e r y  even t h o u g h t h e s u r g i c a l  procedure  had been  e x p 1 a i ned: P:  They t o l d that  me what  they  were  t o remove, and  I would have r e c o n s t r u c t i o n , b u t I had no  understanding  or conception  meant, a b s o l u t e l y none.  The women commonly would have p r o l o n g e d surgery,  really  questions.  problems with  that  they  bladder f u n c t i o n i n g  knew t h a t t h e b l a d d e r  by t h e s u r g e r y .  Even t h e woman  with  midwifery  that  s h e would have a c a t h e t e r a f t e r  surgery:  P:  The d o c t o r s  I have t o have a  catheter  education  that  d i d not understand  even when t h e y  would be t r a u m a t i z e d  o f what  I d i d n ' t have t h e  knowledge t o ask t h e r i g h t  after  going  had n o t r e a l i z e d ,  didn't t e l l  me t h a t  i n f o r 10 d a y s ,  f o r example,  and when t h e y  I won't be a b l e t o v o i d .  They  very  and e v e r y t i m e  c l o s e t o the bladder  just  take  told  i t out  me i t was t h e y do  that,  they  until  i t grows back  The of  p r o c e d u r e s when t h e y given  the  could  The  was s t i l l  a spot  there.  visual  i f s h e had s e e n  mold b e f o r e  anxiety  about t h e v a g i n a l  It scared they'd  the surgery  me when  it.  I believed  easier.  I first  in teaching i s  It scared  One  and t o u c h e d t h e  s h e would have had l e s s  saw t h e v a g i n a l m o l d .  i t looked  me.  inside;  what  feel  t o take  i t out.  look  down t h e r e ,  I didn't  i t looks  like;  When t h e y  like  I could  If  have  me how t o p u t  know what how  it  the s t r i n g  i t was  i t ' s going t o  gave me a m i r r o r t o  I d i d n ' t want t o look  see something bad. just  1982).  i t o u t ; i t would have made i t  like  anything,  him, and  operation.  tools  If someone had t o l d  how t o t a k e  i t s h r i n k , but  reconstruction:  showed me what  touched  would come  a l w a y s show me on  by l e a r n i n g t h e o r i s t s ( B i g g e ,  vaginal  might  would  I had t o have a s e c o n d  woman s t a t e d t h a t  in;  where t h e c a n c e r  The r a d i a t i o n made  b e n e f i t s of using  recognized  as h e a r , t h e  t o them:  computer TV.  t h a t ' s why  and a c c e p t a n c e  s e e , as w e l l  The r a d i a t i o n d o c t o r  there  P:  understanding  T h e r e was a l w a y s a s p o t back.  time  and a l l goes t o n o r m a l .  women had a b e t t e r  information P:  damage t h e n e r v e s and i t t a k e s  because I  But I c o u l d n ' t s e e on t h e end o f t h e mold;  everything The  surgery.  frequently  after  hysterectomy,  surgery,  withholding about  Even t h o u g h t h e y them,  secrets. when  radiation. that  Following  her f i n a l  p h y s i c i a n s m i g h t be  from h e r .  She was s u s p i c i o u s  It  told  They  may be t h a t fully  explanations  However, s h e a l s o d e l a y e d  I told  over  He d i d n ' t  tell  operation;"  alone?",  i sa  prevented  this  the physician's was f i r s t  medical  family  of physicians'  the doctor,  some  me s o m e t h i n g .  a language b a r r i e r  when h e r c a n c e r  misunderstanding  are keeping  so maybe t h e r e  weren't t e l l i n g  understanding  t o her anxiety  they  I couldn't  a l w a y s ask me, " D i d you come  I come t o t h e o f f i c e ,  woman f r o m  an  me e v e r y t h i n g ,  I always thought  chance t h a t they  P:  after a  questions:  believe  due  after  t h e r e t u r n o f cancer  treatment,  she f e a r e d  information  prognosis  t h e p h y s i c i a n s ' m o t i v e s and d i d n o t u n d e r s t a n d  their P:  laser  and a f t e r  professionals to give  about t h e i r  One woman e x p e r i e n c e d  times;  radical  normal.  women a l s o needed h e a l t h  information  three  looked  suspected.  follow-up  at t h i s  time  p r o b l e m s and h e r explanations:  "You s h o u l d  tell  me  everything."  me i t was s e r i o u s ,  "You have t o have  t h e n maybe  have had i t r i g h t  away when t h e c a n c e r  I would  was s t i l l  small.  He s a i d ,  "Go t o your  family  doctor  and d e c i d e  operation,"  and my  family  doctor  about  it.  I waited  said  7 o r 8 months.  trying  t o g e t a j o b and my husband  having  problems.  "If  Then  i t , so maybe  year  first."  back t o my  I should  doctor.  operation  right  sooner?"  The c e l l s  the  malignant,  T h i s woman needed health  half  and t h e n when  He s a i d "Why  were s t i l l  there  and I were  work a t l e a s t  away and s a i d  s p e c i a l i s t and t h e y  bad,  I was  maybe t h e b o s s won't  So I d i d t h a t ,  family  to think  I g o t a j o b and I t h o u g h t ,  I go have an o p e r a t i o n ,  like  about t h e  a  I went  I needed t h e didn't  there  I come  and I went t o  t o l d me now t h a t  i t i s very  i s no t i m e t o w a i t .  follow-up  referral  s e r v i c e due t o t h e l a n g u a g e b a r r i e r  t o a community and h e r  fami 1y prob1 ems. Studies information  about  individual's Why  r e c e i v i n g adequate  cancer  ability  largely  a large proportion  questions  style  even g r e a t e r  don't  understand  information  t o know whether t h i s  o r whether t h e i r than others  how t o  o f o u r p a t i e n t s who  and who a r e n ' t  We need r e s e a r c h coping  depends on t h e  t o ask q u e s t i o n s :  i s i t t h a t we s t i l l  reach ask  show t h a t  seekers?  is their  information  (Morra,  don't  needs a r e  1988, p . 4 2 5 ) .  One  woman s t a t e d  anything might P:  about  have  that  she d i d n o t want t o know  the surgery  because she f e l t  i n c r e a s e d her emotional  I don't  think  distress:  I wanted t o know a b o u t  b e f o r e t h e s u r g e r y ; what you d o n ' t If  I'd have known t h a t  all  vagina.  the bladder  i f I'd f o u n d  bird  who p u t s  to  know about  shove  it.  I don't  emotional  I  I would  But I'm l i k e a  and d o e s n ' t  If i t ' s bad, I j u s t  want  want t o i n other  method o f c o p i n g w i t h amounts w i t h  anxiety  adequate  support. i n f o r m a t i o n about  out m i s c o n c e p t i o n s misconceptions  P:  Maybe  i n t h e sand  information i n small  Giving  caused  vagina  want t o t h i n k a b o u t i t .  Women who u s e t h i s need  hurt.  and t h e b o w e l , b u t n o t t h e  some books on i t .  i t s head  my  i t a s i d e ; p u t i t on t h e back b u r n e r ,  words,  may  know d o n ' t  i f I'd known.  I d i d n ' t r e a d up on i t .  have  anything  t h e y would p u l l  up; i t may have h u r t me more  knew a b o u t  that i t  about  her t o f e e l  I cried  is clearly  unnecessary  at t h e very  menopause.  menopause;  and f i n d i n g  necessary.  One woman had  the effects  i tfelt  o f menopause w h i c h  anxiety:  beginning,  coming t o g r i p s w i t h through  the surgery  not having  and i t was more a child,  and g o i n g  I d i d n ' t want t o go t h r o u g h like  I was g o i n g t o go t h r o u g h  menopause and t h a t was g o i n g was a f r a i d to  that  I would  my s i s t e r - i n - l a w ;  me, and t h e y ' r e old,  I'm g o i n g  lot  older right  that  wouldn't  going  look o l d ;  "People  t o know;  away.  happen,  I thought  alot."  She s a i d ,  "Sometimes you g e t a  thicker  in the waist,  Maybe your  case with  by o v e r h e a r i n g  interns,  to  "Thanks little  i t ' s harder  metabolism  t o keep  slows  down.  o u t i n f o r m a t i o n about  t h e p h y s i c i a n d i s c u s s her  you g e t t r o t t e d who come t h r o u g h  information that  by a l l t h e new g u y s , t h e the c l i n i c  I gathered  him d e s c r i b e me t o o t h e r  what t h e y going  were g o i n g  t o do.  t o do t h e r a d i c a l  included  so a l o t o f  was from  people.  intimidated  listening  I d i d n ' t know  I knew t h a t t h e y  hysterectomy,  were  which  the ovaries.  A n o t h e r woman d e s c r i b e d how s h e o f t e n  this  She s a i d ,  students:  Of c o u r s e  the  I'd look a  and she s a i d  g e t f a t " , and I s a i d ,  sometimes  said  t o get  so I b e l i e v e d h e r .  T h i s woman d e s c r i b e d f i n d i n g  P:  I'm g o i n g  She i s a n u r s e  I  t o look a t  "Sometimes p e o p l e  surgery  awful.  I actually  a r e going  t o look o l d . "  t h e pounds o f f . "  her  t o be r e a l l y  felt  by h e r p h y s i c i a n s , b u t e s p e c i a l l y  e m o t i o n a l l y v u l n e r a b l e time.  was a s i g n i f i c a n t  barrier  during  Feeling intimidated  t o her a b i l i t y  t o ask  questions: P:  I have a p r o b l e m I am  asking  intimidated.  well;  I feel  paranoia  questions  as  though  I get along  comfortable  about  or  asking  about  role;  even t h o u g h  now, b e c a u s e almost  I'm w i t h and  I'm f e e l i n g  I just  time  And e s p e c i a l l y •  so f r a g i l e  and v u l n e r a b l e  security  I have  i s I feel  i n a s e n s e when  comfortable  like  I'm t h e h e l p l e s s one, l i k e t h i s  I'm i n t h e o f f i c e  with  w i t h him,  feeling. It's  the doctor,  I feel  i s h i s place  and h i s room and he's t h e one i n  and I f e e l  In some s e n s e girl,  challenging  I should.  when  charge,  I feel  i n a very  d o n ' t want t o d i s t u r b t h a t  his office  questions  the repercussions  just  and  do;  really  treatment.  I see a d o c t o r  I know  the doctor  them  them more p r o b i n g  I have a h a r d  the only  I still  them, and I have a  i f I t h r e a t e n them t h e n  traditional  and  with  with  alternative  may come back t o me.  that,  them q u e s t i o n s ;  like  I'm j u s t  i t ' s almost  there... bare1y.  as i f I become a  little  and I have no s e n s e o f a u t h o r i t y o r  confidence  when  in  I mean  charge;  I always f e e l they're lollipop  I'm i n t h e r e .  I should  be t h e one  i t ' s my body we're d e a l i n g  as i f I am f i v e  years  o l d , and  p a t t i n g me on t h e head and g i v i n g f o r being  a good g i r l .  with.  That's  me a  e x a c t l y how  I feel,  and I h a t e  perhaps d r e s s i n g sophisticated  i t ; i t d r i v e s me c r a z y .  up and p r e t e n d i n g  helps  Many women commonly their that  physicians' women f e e l  t o be  balance those feel  feelings.  reluctant to question  judgements.  intimidated  Roberts  (1985)  writes  i n the presence of  physicians  due t o t h e s o c i a l i z e d  physicians  have a c c u r a t e  and c o m p l e t e  knowledge  the  In a d d i t i o n ,  the socialized  behavior  body.  s u b m i s s i v e t o men a l s o to  question One  male  assumption  contributes  the doctor  i s assumed t o h o l d  the powerless,  and  as p e r s u a d i n g  (Roberts,  1985, p.  (1981),  f o rvaginal  didn't  cancer,  want t o o f f e n d  that  only  this  i s a l m o s t as t o cede i t  n u r s e who had r a d i c a l  described  medical  t o give  feeling  who had h e l p e d opinions  her p h y s i c i a n ,  physician  I had been a f r a i d  In a d d i t i o n ,  116).  a student  t o seek o t h e r  body.  power  i s the fact  a l l the  the powerful  d e p e n d e n t on, t h e p h y s i c i a n  hesitated  felt  seizing  difficult  surgery  of being  t o women's i n a b i l i t y  go t o t h e d o c t o r ' s  knowledge a b o u t t h e p a t i e n t ' s  Burger  about  w h i c h makes women p a t i e n t s s o  p o w e r l e s s when t h e y  for  that  physicians:  of the things  that  And so  her.  She  because she  and b e c a u s e s h e  understood up my  loyal t o ,  her e x p e r i e n c e :  original  gynecologist  d e s p i t e my mixed  postoperatively. about t h i s  r a r e cancer  left  surgery;  after  (Burger, The  questions  with  I p e r s o n a l l y had  was an e r r o n e o u s  myth  an e q u a l  interpersonal  p h y s i c i a n s and be a s s e r t i v e i n a s k i n g and i t s e f f e c t s .  i n f o r m a t i o n about t h e s u r g e r y ' s  not d i s c u s s e d with  about  know  51).  about t h e s u r g e r y  Significant  ask  1981, p.  this  a b o u t him  no one e l s e would  o r what  women needed t o f e e l  relationship  often  I thought  feelings  these  how t h e r a d i c a l  women.  surgery  e f f e c t s was  One woman had t o  would change h e r  vag i na: P:  I d i d n ' t know t h e y because they "If  I had a s k e d  would t a k e you took  2 inches  gone b e c a u s e  (after  radiation),  will  be f i n e ,  stretches; goes The  t o take  around,  vagina  i t and he s a i d , "No,  t h a t ' s most o f my  i t ' s not very and t h e y  you'll  o u t my  a l l a r o u n d , " and I s a i d ,  kept  l a r g e anymore," saying,  "No, no,  have enough v a g i n a ,  i t ' s no p r o b l e m . "  i n t o my  and  i t  B u t now, i t b a r e l y  fingertips.  p h y s i c i a n ' s manner and a b i l i t y  information ability  him a b o u t  2 inches  vagina  it  were g o i n g  a l s o has a s i g n i f i c a n t  t o ask q u e s t i o n s  about  (1981) d e s c r i b e d t h e h e l p f u l  t o convey  effect  on a woman's  the surgery.  Burger  approach o f a g y n e c o l o g i s t  who e x p l a i n e d to  her.  vaginal  reconstruction  She summarized  the q u a l i t i e s  - take time t o e x p l a i n - draw  and b l a d d e r of t h i s  the risks  repair  approach:  and b e n e f i t s .  pictures.  -  l e tpatient  -  instill  -  feel  c h o o s e what s h e wants t o have done.  realistic  okay  about  hope.  patient  seeking  further  consu1 t a t i o n . -  include  patient  (Burger,  1981, p.  Four women a s k e d They  needed t o r e a d  that  the cancer  of  t h e unknown.  surgery's report P:  i n plans 51).  t o read  these  their  reports  pathology  t o help  One woman s t a t e d as w e l l  her t o understand  that  yourself the  lithotomy  glad all  in text,  I read of i t .  them,  like  report.  shocking  I felt  hearing was d r a p e d i n  I couldn't  s o much b e t t e r  effects: He gave me  p o s i t i o n , b u t on t h e whole  them even t h o u g h  fear  reading the  you know, Mrs  after  I was so understand reading  I knew what was g o i n g on, and I r e a l i z e d  how much t h e d o c t o r think  their  the surgery's  I t was a l i t t l e  believe  as t h e p a t h o l o g y  I a s k e d my GP f o r t h e p a t h o l o g y everything.  reports.  them  had been removed and l e s s e n  procedure report  helped  f o r treatment  wasn't t e l l i n g  me.  he was d e l i b e r a t e l y w i t h o l d i n g  I don't  anything, but  I certainly from  wasn't g e t t i n g  him t e l l i n g  me what was g o i n g o n .  t h e s e r e p o r t s I had b e t t e r all  o f what t h e y  I think that  i s that  information.  be on me.  understood  it.  the malignancy,  my  affecting?  I f you d o n ' t  imagination  i s boundless.  gave b o u n d a r i e s ,  like  because I  I mean you c a n ' t r e a l l y  o f t h e unknown... what p a r t  experienced  I guess  what you s e e and u n d e r s t a n d  Receiving  t o understand  And even t h e n e g a t i v e p a r t s ,  found  fear  would  of a l l ,  you c a n ' t have t o o much  where t h e y  blindly  f i r s t of  had done t o me, and s e c o n d basis  just  Reading  understanding;  gave me a b e t t e r  what t h e e f f e c t s feeling  t h e whole p i c t u r e  f e a r as  whereas  o f t h e body  know, w e l l ,  that is  i t  your  The p a t h o l o g y  and you c a n d e a l w i t h  report  boundaries.  i n f o r m a t i o n from o t h e r s who had  similar  s u r g e r y h e l p e d t h e women  t h e s u r g e r y and p r o v i d e d them w i t h  needed  understand  emotional  support: P:  A woman who had a urostomy in t h e h o s p i t a l . said,  "Just  came and v i s i t e d  She was an o l d p r o a t i t . She  think,  everyone  has t o g e t up t o go t o  t h e bathroom a t n i g h t and you w o u l d n ' t get  hooked up f o r t h e n i g h t . "  still  keep  me  i n touch  with her.  That  have t o ;  helped....I  you  In  addition,  although  when s h e saw a n o t h e r graft she  donor  also  site)  one woman f e l t  woman's l e g s c a r  after  (from t h e s k i n  vaginal reconstructive  appreciated having  woman s p e c i f i c ,  distressed  personal  surgery,  t h e o p p o r t u n i t y t o ask t h i s  q u e s t i o n s about  the surgery's  effects: P:  I met a n o t h e r  woman w i t h  s c a r e d me even more they're it's  going  talked was  going  her.  o r what  quite  with  a b i t . I was s u r p r i s e d  big  piece of skin missing.  was  very  piece of skin; piece  they  ripped  "That's  that  because the  don't  the least, t o i t ; more  lady t h a t  I wouldn't  feelings  with  the vagina just  take a  you how b i g o f a  and s h e had t h e s e  I thought;  helped  s h e had such a  they'll  tell  she went  i t and t h a t  two p i e c e s  "Oh, no, on my l e g ,  can see i t , I can never  t h e r e ' s more with  they  me how  because I  me what  that  what  I was g l a d I  I thought  and I t h o u g h t  take,  off.  everyone said,  i t ' s like.  and she t o l d  and how s h e d e a l t  small  which  didn't t e l l  I knew what t o e x p e c t  in the hospital  through  surgery  because t h e d o c t o r s s a i d  t o do, b u t t h e y  to feel  with  similar  wear s h o r t s . "  t a k i n g i t from pain."  the  I thought  had i t done was a g r e a t have known a n y t h i n g  She  leg,  talking thing  about i t ;  t h e mold, w h i c h was t h e most  important of  and p a i n f u l  the surgery,  was h a p p e n i n g sexual it;  i f you were a b l e  t h e women d e s c r i b e d  of the surgery's  during  these  A l l I wish  really would  i s that there  understand affect  ignorant  there  me  what later  I could  what t h e d o c t o r  I could  that's  what  needing  effects  and  felt  about  fuller  emotional  had been someone  I could  i t a l l meant and how i t on, b e c a u s e  when t h e y  I had no i d e a ; I  d i d the surgery. I could  I wished  have gone t o t a l k  s i t down and s a y , " W e l l , said,  what a r e t h e r e s u l t s one  t o have  i t , s i t down and d i s c u s s i t ;  had been someone  to....where is  what  explanations:  have t a l k e d t o a b o u t  was  i t felt  about i t .  explanations  P:  after;  d i d , and how  process  I d i d n ' t know how mine was g o i n g t o  Repeatedly,  support  what t h e y  i n t e r c o u r s e , and how h e r husband  because  feel  t h i n g ; and t h e whole  what does  I really  i t mean?...and  and r e p e r c u s s i o n s ? "  s i t down and t a l k needed.  this  to like  I had no  t h a t , and  Summary In Having  this  first  major  category,  G y n e c o l o g i c a l Cancer, fears  symptoms,  even when p h y s i c i a n s d i d n o t i n i t i a l l y these  intuitively  symptoms  knew t h a t  the d i a g n o s i s . delay and  their  t h e women d e s c r i b e d  intuitive  consider  about  F i n d i n g Out About  Four  h e a l t h due t o s p e c i f i c  t o be s e r i o u s .  s h e had c a n c e r  return  diagnosed  f o r medical  with  follow-up  women f e l t  emotional having  support  cancer.  emotional  support  their  about the  During  dying.  cancer The  They  this also  symptoms  and a need f o r  of finding  o u t about  receiving  physicians at t h i s  time.  i n f o r m a t i o n about t h e  t o begin  time,  family  her p h y s i c i a n .  o u t more  and needed t r e a t m e n t  possible.  told  significant  f o rphysical  d i d not p e r c e i v e  from  a  due t o a n x i e t y about  a t t h e time  Most women needed t o f i n d cancer  help  intense alarm  They  before being  c a n c e r . One woman d i d n o t  p r o b l e m s and m i s u n d e r s t a n d i n g The  One woman  women e x p e r i e n c e d  between s e e k i n g m e d i c a l  being  having  as soon as  t h e women o f t e n  had t h o u g h t s  thought  and f e e l i n g s  that  and s u r g e r y were u n r e a l .  women d i d n o t r e c e i v e a d e q u a t e  support  because they  believed  they  strong,  because they  were a f r a i d  emotional  should  of being  be e m o t i o n a l l y rejected or  pitied,  or because t h e i r  families  know how t o g i v e e m o t i o n a l to  keep t h e i r  isolated the  a t times  effects  emotional they  cancer  support.  from  were a l l o w e d  A l l women  o t h e r s due t o h a v i n g  from  d i d not  Most women needed  diagnosis a secret.  of the surgery.  comfort  and f r i e n d s  felt  c a n c e r and  They needed p h y s i c a l and  o t h e r s and needed t o f e e l  t o express  that  v u l n e r a b l e emotions t o  others. More  i n f o r m a t i o n was needed  understand did  not r e a l i z e  that  they  bladder and  the radical  would  Reading  experience  i n order  their  prolonged  They needed  pathology  weakness o r  problems  with  anatomical  r e p o r t s helped as h e a r  reduce  terms  changes. fear.  The  i n f o r m a t i o n and t o  e n c o u r a g e d t o ask q u e s t i o n s . The  women d e s c r i b e d f e e l i n g  physicians appreciated had  They  t o learn medical  t o understand  women needed t o s e e as w e l l be  and i t s e f f e c t s .  the extent of p o s t - s u r g i c a l  functioning.  concepts  surgery  f o r t h e women t o  and i n h i b i t e d visits  experienced  similar  significant  support.  asking questions.  and i n f o r m a t i o n from  t h e whole e x p e r i e n c e time,  about  i n t i m i d a t e d by  surgery.  with  personal  They  o t h e r women who  They needed t o d i s c u s s  someone who c o u l d g i v e them i n f o r m a t i o n , and e m o t i o n a l  Physical Gynecological category  Cancer  contains  time to r e g a i n problems,  Recovery  and  After Radical  Surgery For  i s t h e s e c o n d major  category.  This  t h e women's d e s c r i p t i o n s o f n e e d i n g  strength vaginal  after  healing  surgery, and  b l a d d e r and  reconstruction.  bowel  I I . PHYSICAL RECOVERY AFTER RADICAL SURGERY FOR This  GYNECOLOGICAL CANCER  second major  category  women's d e s c r i p t i o n s o f t h e i r problems  after  under  three  Bowel  and  surgery.  headings:  Bladder,  was  developed  prolonged  from  physical  These problems are  discussed  N e e d i n g Time t o R e g a i n  and  Vaginal  the  Healing  Strength,  and  Reconstruction. 1. N e e d i n g Time t o R e g a i n The regain  women needed  previous  They had  not  at  levels  expected  the  p a i n which  P:  i t was  I think  normally.  extent  they  I left  of p o s t - s u r g i c a l  experienced:  the  I c o u l d walk  hospital  around  I stayed  at  c o u l d make t h e  so  me  surgery,  so  long  this  sudden  all  time.  I was  going  up  stand  was  on  my  shocked  down  that i t  stairs.  healthy  physical  before  the  inactivity  frustrating: f o r 6 weeks, d u r i n g  know how  I lost  and  and  prolonged  stayed  I don't  by m y s e l f .  couldn't  and  others  housekeeper  worst  just  home.  t h e women were a c t i v e  d e p e n d e n c e on The  trip  to  stamina.  2 weeks b e f o r e I  Since  P:  p h y s i c a l s t r e n g t h and  6 weeks b e f o r e  When  surgery  someone e l s e ' s house f o r a n o t h e r  took  and  3 months a f t e r  least  of  weakness and  Strength  I could  so much w e i g h t  feet  cope  the if I  that I  f o r more t h a n  1/2  an  was  hour, it  and somebody had t o cook and f e e d me.  was a t e r r i b l e  person such  a hurry  t o be m y s e l f  (1981),  a student  f o r vaginal  extremely  I'm t h e t y p e o f  cancer,  I was i n  again. nurse  who had r a d i c a l  also described  weak f o r a p r o l o n g e d  frustrated  because  who wants t o be on t h e go a l l day.  Burger surgery  feeling,  F o r me  period after  by p h y s i c a l i n a c t i v i t y  being s u r g e r y and  and d e p e n d e n c e on  others: The  surgery  hour  was d e b i l i t a t i n g  length, the loss of f i v e  e x t e n s i v e removal support my  provided  better  fast.  others  was h a r d  of organs.  p i n t s o f b l o o d , and When t h e 24 hour  by t h e h o s p i t a l  g r e a t e s t times  of d i f f i c u l t y .  Being  was gone,  h e l p l e s s and d e p e n d e n t on  f o r me,  t o being  since  The  women needed t o know t h a t t h e i r  active  back t o n o r m a l .  (Burger,  beautiful. anything  long  i t was g o i n g  I thought  1981, p.  t o take  I would that.  never  to get  maybe i t was t a k i n g t o o  in the h o s p i t a l ,  like  ill  e n e r g y and  I d i d s e e someone (who had s i m i l a r I was  been  eventually return:  I d i d n ' t know how  while  very  I had n e v e r  was used  long.  I faced  I wanted t o g e t  and  i n d e p e n d e n c e would P:  due t o i t s 4  and s h e l o o k e d  suspect  I told  surgery)  her having  myself,  " I f she l o o k s  good a f t e r  3 months t h e n  t o o , " and i t happened. don't it's get P:  know  better;  you  that  going  t o stay  so i n ; l i k e  everyday, that  that; i f  part.  i n t h e r e you g e t t o f e e l i n g  to just  i ttakes g e t your  e v e r y t h i n g you've g o t , body t h r o u g h  see that  those  when t h e y  same p e o p l e  really  levels  the r a d i c a l  of physical  surgery.  One woman e x p e r i e n c e d  due t o s e v e r e  eventually  r e q u i r e d more s u r g e r y :  year  because  was s i c k  with  bowel  adhesions  i n January,  I was s t i l l  risky  physical  which  but i t took  I walked  n i g h t ; t h e p a i n was s o b a d . s o many t i m e s ;  It was t h e a d h e s i o n s .  after  a whole  no good a t C h r i s t m a s .  the adhesions;  was a t t h e c l i n i c  regained  s t r e n g t h and s t a m i n a  disability  I had t h e s u r g e r y  do look  come o u t t h e o t h e r e n d .  Due t o c o m p l i c a t i o n s , 2 women n e v e r previous  t h e day;  i t h e l p s t o s e e somebody who's been t h e r e and  healthy  and  like  a r e so r u n down, you have no s t r e n g t h , and  you're  P:  that  or i f i t ' s not going t o  was t h e h a r d  a r e some t i m e s  be l i k e  But you doubt y o u r s e l f ; you  going t o get b e t t e r ,  There  to  i f you're  I should  I  t h e f l o o r day  I couldn't eat. I I g o t p l u g g e d up.  They t h o u g h t  i t was t o o  t o operate.  Another  woman had s e v e r e  edema due t o t h e removal  91 of  lymph nodes and  radiation  void  frequently during  P:  I was  sick  After  the  recovery  was  could was  slow.  the  The  a b a l l o o n and  in  the  upper r i g h t  in  the  groin area.  in  the  groin.  l i n e s when night.  slow.  And  The  doctor  said  the  radiation  It g e t s  said  that forever  anything look  about  healthy;  energy. and  like  I've  can't  showed me  i t , just nobody no  sleep.  a  too,  knows  abdomen,  little I can  In t h e  see  night  lots  of  sick,  but  I get  tired  I go  to  I have a s c a r  maybe  do  I have  I'm  I no  easily  the  tired.  says  the  rest.  t h a t ' s why  doctor  in the  having  washroom, maybe t h r e e t i m e s ; My  the  t o do e x e r c i s e s .  and  s t r e n g t h now.  and  balloon  I t h i n k ; can't  I am  are  swelling is  l e g cramps  how  lots  legs  The  i t ' s f r o m not  It  be  my  lower  I get  he  time i t  s w e l l i n g came  then  like  ankles,  I  have i t .  to touch.  lymph nodes and will  The  I still  I wear s o c k s .  3 months and this  l e g , in the  the  first  but  a l l day,  hard  the  my  bike;  slow.  and  surgery.  surgery)  only  to  fatigue:  big  After  i t was  o r g a n s go  i f I stand  the  (radical  doctors  radiation,  Sometimes, like  after  I c o u l d r i d e my  makes a l l t h e after  very  (hysterectomy)  run;  very  operation  very,  Needing  n i g h t a l s o caused  e x a c t l y 1 year last  operation  the  treatments.  so still  92  inside  from t h e s u r g e r y ,  bladder,  so t h a t  different  i s a problem.  strange  I l i e down.  and I have o n l y  pains;  Sometimes  Sometimes  a pulling  I worry  that  one h a l f I have  or pinching i t ' s cancer  again. Significant bowel this under  and b l a d d e r radical  and p r o l o n g e d  with  f u n c t i o n i n g were a l s o common  surgery.  t h e next  problems  heading.  These problems  a  after  are discussed  when  2.  Bowel  and B l a d d e r  Problems  T h r e e woman had r a d i a t i o n the  radical  surgery  which  treatments  caused  p r o b l e m s due t o bowel  adhesions  and i r r i t a b l e  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 P:  blockage  after  I had such  bowels.  in addition to  all  bowel  t r o u b l e ; I d i d n ' t know  It t o o k  me a l o n g t i m e  because  secure the  store.  time.  rectum to  been  keep c o n t r o l  4 years.  The d r a w e r s  there  and i t was a l r e a d y g o i n g ; about  Sometimes a f t e r feel  it.  o f my gas e i t h e r  It's just  I c o u l d n ' t make  couldn't  a  the e l a s t i c i t y ; the  be c l o s e d t i g h t .  c l o s e now a f t e r  anything  abig  in the last  so f a r away from  wash;  do P:  only  c u t the nerve,  should  I c o u l d go i n t o  y o u ' v e g o t t o have an eye on i t a l l  I couldn't  because they  You g e t  day I'd be c o n s t i p a t e d .  i n t h e r e you're  toilet;  back,  my d r a w e r s .  before  That's  i f I could  bring that milk  shitting  up and t h e n e x t  department year  store,  e x c u s e me,  keyed  experienced  surgery:  get t o t h a t c o r n e r without,  They  beginning I had t o  i t t o t h e bathroom;  I still  the radiation  no t i m e  i t was  t o t h i n k or  wear a p a d . I had d i a r r h e a and I  i t and had t o r u n t o t h e t o i l e t .  T h e r e was a l l t h i s  irritation  on t h e s k i n .  Then I  was c o n s t i p a t e d the  radiation  lots  needing  P:  after  all,  i t by e a t i n g  and whole wheat  the surgery.  area  hard  stool  bread.  It caused t h e  and c a u s e  would push on t h e pain:  F o r one t h i n g , you c o u l d n ' t yourself;  I got over  f o r t h e women who had v a g i n a l  since  vaginal  and I t h i n k  was a l s o a common p r o b l e m due t o  distress  reconstruction  that.  No f e e l i n g  and v e g e t a b l e s  analgesics  greatest  healing  caused  of f r u i t  Constipation  a l o ttoo.  you c o u l d n ' t  at least  p u t any p r e s s u r e  strain  on  t o move t h e bowels a t  I couldn't.  I literally  until  i t was r e a d y  t o d r o p o u t o f t h e body  before  I could  do a n y t h i n g  I felt  like  to wait  hurt rip  everything  constipated,  wisely,  it.  First  of a l l  t h e mold would pop o u t , and i t j u s t  t o o much t o p u s h ;  everything  about  a l m o s t had  I felt  like  down h e r e a p a r t .  w h i c h made  I could.  but i t took  And  i t harder,  I didn't awhile  I was g o i n g I was  although  take p i l l s  f o r that  to  I  did  but e a t i n g  to balance  itself. The bowel P:  women had a common f e a r t h a t  movement would I think  hurt.  damage t h e r e c o n s t r u c t e d  i t was a f t e r  bowels).  I had j u s t  The o n l y  pressure  scare  2 weeks I was a b l e a little that  b i t ; then,  I had when  during  a  area: t o go (move i t didn't  I went i s  t h a t my mold  i s going  it  every  time  so  i t doesn't  constipated. since but  w i t h my  come o u t .  I went a l i t t l e  I was s t i l l  painful.  During  not v o i d  P:  are also  void  which  t h e b l a d d e r and  traumatized.  Most women  myself  few months  every  time  I voided.  I c o u l d n ' t even v o i d  inside  use t h a t time  and so I would  t o g e t as much o u t as I  would  always t r y t o v o i d  first  before  Of c o u r s e I using the  I had t h e s e n s a t i o n o f h a v i n g  t o go.  t o u s e a c a t h e t e r f o r 4 months and t h e y  know whether whether  I would  i t would  I don't  think  a  I t seemed t o be e a s i e r t o  and u s e t h e c a t h e t e r a f t e r w a r d s .  but  and i t was  a l l the scars that  could  had  i s very  me a l o n g t i m e ,  when t h e mold wasn't  catheter.  be ok,  se1f-catheterization:  b i t on my own.  deliberately  probably  own f o r s e v e r a l weeks a f t e r  I was c a t h e t e r i z i n g  little  b i t i t would  surgery,  on t h e i r  the f i r s t  i f I would be  come a p a r t .  and had t o l e a r n  For  i t back  ( i nthe h o s p i t a l ) that  I was s c a r e d w i t h  nerves  I had t o h o l d  t o push  on t h e T y l e n o l #3,  the radical  surrounding  just  I wondered  so i t t o o k  s o m e t h i n g would  surgery  finger  They s a i d  constipating,  could  t o come o u t .  I  didn't  a l w a y s have t o u s e i t o r  f i xitself. I void  It f e e l s  as c o m p l e t e l y  normal  now,  as I used  to.  It doesn't  not  as s t r o n g  three For and  as s t r o n g ,  as i t used  t h e gush  t o be.  never  returned  i s just  I've had two o r  i n f e c t i o n s during  some women, t h e s e n s a t i o n s  voiding  causes P:  bladder  feel  that  time.  of bladder  and b l a d d e r  fullness  functioning  still  problems:  I used so  an i n and o u t c a t h e t e r  a t home.  It d i d n ' t  a mirror  at f i r s t ,  awhile.  Even  bit.  What  my own. and  the  but i t gets  in the h o s p i t a l  Like r e a l l y  public three  I felt  t h a t was  of i t .  health  have any s e n s a t i o n .  sensations, that the  there  good.  little  myself,  L i k e they  ask me,  so how would  infection.  I still  still  back t o n o r m a l ;  She came  because  Well,  a r e some t i m e s when  The  f o r me t o t e l l  infection  sensations?". period,  and f o r c e  me t o do t h a t .  I t ' s hard  same c o n t r o l , and t h e n  isn't  go a  after  i t , I w o u l d n ' t be  n u r s e was r e a l l y  t i m e s a week.  burning  I could  I used  I'd u s e t h e c a t h e t e r f o r  They t o l d  I'm g e t t i n g a b l a d d e r  any  i t in.  p r e t t y easy  concentrate  t o go anymore, t h e n rest  putting  week o r  I would do was go as much as I c o u l d on  t h e n when  able  hurt  f o r the f i r s t  when  I don't "Do you have  I h a v e n ' t any I know?  I don't  I've t h o u g h t  have a c c i d e n t s .  My  Except  seem t o have i t was an bladder  i t ' s unpredictable.  I'm v o i d i n g ok, b u t I have no s e n s a t i o n . One  woman went home w i t h  which  d r a i n e d her bladder  lower  abdomen. to f i l l  bladder  muscle tone  removed.  terrible.  a tube  had been  bladder surgery:  to drain  and c h e c k e d  out,  little  the bladder  peeing,  used  a pad a l o n g t i m e . a l l t h e time  my b a n d a g e s .  by l i t t l e .  I started  I would  allowed the  i t and t h e home c a r e  out;  weeks  in the  f o rregaining  experienced  I emptied  drain  inserted  from  I had i t f o r 2 months and i t was  came e v e r y d a y  wet  tube  f o r s e v e r a l months a f t e r  abdomen.  the  on t h i s  catheter  s i n c e p a r t o f her bladder  I went home w i t h the  a tube  w h i c h was i m p o r t a n t  T h i s woman a l s o  dysfunction P:  through  A stopcock  bladder  a supra-pubic  She p u l l e d  It f i n a l l y  b u t I had no f e e l i n g . That  was t e r r i b l e  and I c o u l d s m e l l  feel  nurse  it.  pulled I  being  After  some  t h e need t o go, b u t I u s u a l l y  c o u l d n ' t make i t . Bladder after  the radical  problems with P:  f u n c t i o n i n g improved  I still go  the  frequency,  t h e women d e s c r i b e d  urgency,  years  having  and i n c o n t i n e n c e :  have a c c i d e n t s , e i t h e r  because  stretch  surgery,  s l o w l y , b u t even  from  forgetting to  I have no s e n s a t i o n , o r t r y i n g t o  i t t o o l o n g between g o i n g .  s e n s a t i o n t o go n o r m a l l y ,  When you have  i t ' s right  atthe  98  b o t t o m you f e e l that,  but I t h i n k  wake me up. When  the pressure;  i t must p r e s s  Every  I'm s i t t i n g  does  usually at  it.  just  night,  alcohol  is  hours  Then  o r g a n s and  I t r y t o go.  I ' l l stand  up and  i t ' s t h e movement o f t h e b l a d d e r  Sometimes  a little  a fair  bit.  b i twill  come o u t ;  If I've been o u t l a t e  and c o f f e e , t h a t  seems t o have a b i g e f f e c t  I go and how f r e q u e n t l y .  Sometimes  wake up i n t h e m i d d l e o f t h e n i g h t  night.  If I have  and know I  I ' l l have some  leakage then  leakage i n  I know my  body  g e t t i n g r u n down.  One woman had p r o b l e m s w i t h only  on o t h e r  or four  have t o go, and sometimes the  I d o n ' t have  o r i f i have a c o l d , and i f I d r i n k  on how much I'll  three  i t ' s fine.  walk, and I t h i n k that  well,  after  or  opening  P:  I was  having  a d d i t i o n a l surgery  functioning  to repair a  fistula  i n her u r e t h r a : lucky,  finally  I couldn't  (void)  i n t h e h o s p i t a l , but  i t came back and e v e r y t h i n g  4 months urethra  later,  I developed  and v a g i n a  The b l a d d e r leaking,  was f i n e .  a fistula  and I had t o go back f o r s u r g e r y .  is still  not working p r o p e r l y .  and when my b l a d d e r  i t just  Then,  between t h e  b u t I have t o go t o t h e washroom  frequently, urine;  bladder  dribbles out.  is full I can t e l l  I t ' s not very  I can't when  hold  I'm  my  99 getting  full.  I'm c a r e f u l  washroom a r o u n d extend  b u t sometimes t h e r e  and I have t o look  t h a t time;  then  i tstarts  as much as I c a n , b u t I c a n ' t feeling. they  They t o l d  me t h a t  f o r i t , and I  t o happen.  hold  exercises  which  exercises  improved  i t c o u l d be c o r r e c t e d , b u t  receiving  bladder  and had s t o p p e d  interview. regularly  instructions  control.  exercising  pelvic  attention  Urinary  from  The would  i s a nuisance  muscles  bladder  infections, the functioning are  researchers:  i s a source  o f embarassment  leading to i s o l a t i o n .  (Henderson,  s e v e r a l months, t h e y level  of bladder  sensations of bladder completely  c a n be improved by  (Henderson,  1988, p.  control,  fullness  return after  would  At b e s t ,  185).  women needed t o know t h a t , a l t h o u g h  take  of the  i n c u r t a i l m e n t o f a c t i v i t i e s and  interaction  a reasonable  ever  nurse  incontinence  w h i c h may r e s u l t social  by poor  do t h e s e  control  bladder  about  She d i d n o t  them a t t h e t i m e  floor  to reducing  problems caused  it  doing  I t i s known t h a t b l a d d e r  In a d d i t i o n  gaining  try  i t ; i t ' s a horrible  know, however, how f r e q u e n t l y s h e s h o u l d  social  I  want t o w a i t .  T h i s woman remembered  1988).  i s no  i t probably  eventually even  attain  though  and v o i d i n g m i g h t n o t  this  radical  surgery.  The  women's e x p e r i e n c e s w i t h v a g i n a l  reconstruction physical 3.  surgery.  women who had v a g i n a l as t h e r a d i c a l  the vaginal  This  vaginal  area f o r at least  of the vaginal  g o t two p i l l s  faint,  changed was used the me. The  i t ' s just  i t myself  3 months a f t e r  lubrication, worse t h i n g .  that  removal  One woman f o u n d  and I t h o u g h t pain,  but j u s t  pulling  I t was l i k e  I first I was g o i n g  terrible.  I  inside.  That  I found  pain  i t o u t ; t h a t was through  I've had i n my  life.  o u t was t h a t  none o f t h e  knew how t o do i t . The f i r s t just  I  knives going  i t and t h e n u r s e s  the  n u r s e had t o do i t by h e r s e l f ,  watched.  t i m e my d o c t o r The n e x t  and she'd  i t b e f o r e , s o she was s c a r e d , and I was  scared.  that  i t t o o k me a week t o l e a r n .  did  done  surgery.  intolerable:  horrible  T h a t was t h e w o r s t thing  mold.  o n c e a day t o r i n s e  very d i f f i c u l t ;  nurses  having pain  ( f o r pain) before  change t h e mold m y s e l f , to  at the  p a i n became s e v e r e d u r i n g t h e d a i l y  insertion  I just  reconstruction  surgery described  r e m o v i n g t h e mold was a l m o s t P:  heading i n  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  same t i m e  and  a r e d i s c u s s e d under t h e l a s t  recovery after  Two  in  h e a l i n g and  time never  The severe P:  s e c o n d woman a l s o  vaginal  Doing  pain  t h e mold  painful;  when c h a n g i n g change e v e r y  i t was v e r y  t i m e s more d i f f i c u l t had at  t h e end I would  didn't  because  P:  t o g e t back  hours u n t i l first  i t was done  and c r y i n g and  Putting  other  but  I  h u r t any  s h e would  damage  area:  i t o u t when  b i t e a s i e r but  a l l my s t r e n g t h .  I was l y i n g  and i t j u s t d i d n ' t  everytime  You're o n l y  minutes.  I t was  problems with t h e  that  allowed  I tried to  down, s t a n d i n g  that  I dreaded; I  I was s u p p o s e d t o keep  T h e r e was a s u c t i o n  up,  make any d i f f e r e n c e .  C h a n g i n g t h e mold was t h e t h i n g  it.  I really  I had t o do i t a g a i n .  i t o u t took  so s c a r e d  myself,  i tdidn't  i t i n was j u s t a l i t t l e  squatting,  was  that  be a n t i c i p a t i n g f o r t h e n e x t  woman d e s c r i b e d  reconstructed  take  I literally  I'd r i p t i s s u e and i t t o o k a l l  mold, e s p e c i a l l y her f e a r  taking  in.  t o do t h e p r o c e d u r e and  I had t o h u r t  more, and y e t I would  the  t o remove and t e n  and i t was so p a i n f u l  managed and o n c e  vaginal  unbelievably  want t o do i t , b u t I had t o do i t ' .  difficult  The  day was  be s w e a t i n g  Everytime  my s t r e n g t h ,  t h e mold:  difficult  t o u s e a l l my s t r e n g t h  bleeding.  24  had e x t r e m e d i f f i c u l t y and  t o change  i t o u t 10  i n s i d e , even  though  t h e r e was  a hole through  out,  suddenly  then  thought, back  so  really  pulling;  when  I still  took  such  problem and  with  had  just the  fit  o f her  nylon s t r i n g  t o get  i t out.  string;  i t was they  d i d i t myself  T h i s woman f e l t  the vagina  t o come o u t , "  back, and  end  and I  of t h a t that  in the  because  hands were a l l c u t up  the  that  t o go  I finally was  my  c o u l d n ' t get i t  come o u t ,  stitched  going  a force  I had  that  i t would  "I hope t h e y i t ' s not  i t ; I just  I  and  sore  i n t h e mold; i t I also  had  a  a l w a y s coming o f f ,  had  with  to r e s t r i n g i t . cotton string  t h e shape, m a t e r i a l ,  and  vaginal  Urine then  she r e q u i r e d  further P:  s u r g e r y which  It was sharp  I was  "No,  no,  very  cruel  of  thing,  t h a t mold.  opening,  but  t h e way  I don't  a thing.  What b o t h e r e d  i t was  me  know how  I had most  done.  It was against  they  The  really your  t h e mold  would t e l l  I think mold  me,  i t was is really  anyone c o u l d t h i n k  a very hard,  is that  wall.  trauma:  them t h a t  i t i s t h e medium s i z e . "  itself;  such  i t rubs  always t e l l i n g  b i g f o r my  and  more p a i n and  a t t h e b o t t o m , where  too  cruel  caused  a horrible  urethra. was  the vagina,  tight  fistula  w h i c h o c c u r r e d between t h e u r e t h r a and into  and  problem.  v a g i n a l mold were r e s p o n s i b l e f o r a  leaked  was  they  heavy  cut  thing.  i t with  a  scalpel apart sent  and i t l e f t  edges.  s o I went back and t o l d me t o a t e c h n i c i a n  said,  "How c o u l d  I thought was  rough  that  rubbing  Then t h e y  my d o c t o r ,  and he smoothed  you wear t h a t ? "  i treally  the  hole,  and t h a t  when  tell  me i t ' s t h e s c a r  closing  and  prescribed  and o d o r ,  formation  report  and B r a g a ,  after  serious of scar  and V a l e n t i c h , vaginal  tissue,  by s e v e r e  pain  1986; L a c e y ,  gives  1986).  vaginal  and p a i n  An o v e r v i e w  reconstruction a feminist This  reconstruction,  problems with  by d o u c h i n g  with  1988).  i n one s t u d y w h i c h  vaginal  problems  (Hampton;  and p r o b l e m s o f v a g i n a l  (Cairns  that,  experience  awhile  s t u d i e s on  t h e problems caused  been e x p l o r e d  been d e s c r i b e d  perspective  solved  Although  procedures  Feigenbaum, H i l l ,  the benefits  reports  creams.  reconstruction  have n o t u s u a l l y  has  t o take  problems with  and o d o r w h i c h were e a s i l y  of  They  i t s o f t e n s up.  discharge  Stern,  o u t and p l u g  the f i s t u l a ) .  and i t ' s g o i n g  T h e s e women a l s o m e n t i o n e d  discharge  labia  They  b o t h e r s me a l o t , i t ' s s t i l l  (6 months a f t e r  vaginal  He  I was w a l k i n g .  (fistula).  of the large  sore  using  i t out.  I t was so h a r d .  had t o r e p a i r t h e h o l e  t o take a piece  so she  d i d cut the urethra; i t  a l l t h e time there  had  before  I t was c u t t i n g me  study  women  shrinking, the  and t r a u m a  during  i ntercourse. In t h e p r e s e n t manipulating experienced the  vagina.  and  usually  nitrate. They  besides  severe  pain  women  also  t h e v a g i n a l mold, b o t h p a i n and b l e e d i n g from The removal  of this  done by t o p i c a l  The p r o c e d u r e  tissue  was n e c e s s a r y  applications  o f t e n caused  of s i l v e r  severe  w i t h i n 6 weeks, t o s t a r t  sex,  they  and t h e n  was  about  usually  8 o r 10 weeks," j u s t  effective  probably  and t h e y  q u i t e awful  my mind  t o take  because  nitrate  had t o t a k e  afterwards.  any p a i n - k i l l e r s  examinations;  what a dummy;  doesn't  t o me t h a t  unless  I'm i n a c u t e  should  have t a k e n  there be t o o  wasn't  f o r c e p s and  thinking that i t  It never  I should  have.  take  It j u s t  a p i 11  p a i n , b u t l o o k i n g back, I  something t o prevent  mobility.  crossed  before the  I should  women r e p o r t e d t h a t p a i n from  inhibited  longer,  be a l l t h a t b a d , and I remember  feeling  The  need  What was r e a l l y  I remember t h e d o c t o r  wouldn't  occur  having  i t would  was when t h e s i l v e r  enough  it off.  p a i n : P:  f o r me, and t h e g r a n u l a t i o n t i s s u e  open and b l e e d i n g .  uncomfortable  rip  "No, y o u ' l l  s o much g r a n u l a t i o n , and t h a t  uncomfortable was  said,  from  granulation tissue in  had s u g g e s t e d  probably  also  study,  The mold  that pain.  t h e v a g i n a l mold  had t o be k e p t i n  place  t o avoid  tissue  shrinking during  the f i r s t  3  months: P:  I wanted would go  t o g e t up and g e t g o i n g ,  get going  t h i s mold would  l i e down a g a i n .  walking  going  painful. so  that  touch  Lying  the scar  just  mold was and so relaxing  more and d i d n ' t  E v e r y b o d y t o l d me a f t e r 6  be ok, b u t I wasn't  b e c a u s e t h e mold  in the reconstructed  However,  18 months a f t e r  vagina  radical  vaginal  r e c o n s t r u c t i o n , and 14 months a f t e r  fistula  repair,  tenderness  When I  horrible.  Severe pain lessened.  back.  beautiful,  came i n a l i t t l e  tissue.  i t was 8  i t was r u b b i n g  down was j u s t  t h e mold  and I had t o  the vaginal  out of there;  weeks y o u ' l l was  my s t r e n g t h  I had a f e e l i n g  to fall  hurt  T h a t was d e p r e s s i n g ;  weeks and I was g e t t i n g was  and e v e r y t i m e I  t h i s woman s t i l l  and h e a v i n e s s  during  gradually s u r g e r y and her u r e t h r a l  experienced  pelvic  strenuous  physical  the horse.  When  act i v i ty: P:  What  I tried  it's  fine,  then  i t hurts  anything it's going  t o do i s r i d e  b u t once he s t a r t s like  anything.  now, even h o r s e b a c k  too sore.  It j u s t  t o come o u t . . . i t ' s  feels  I walk  t r o t t i n g or cantering They  t o l d me  riding, like  a horrible  I c a n do  but I can't,  everything i s feeling.  Even  a trampoline everything The  during  women f o u n d t h a t impossible of  a sexual  partner.  comfortable  still  felt  was  scared P:  weeks a f t e r is  still  fatigue,  lack o f d e s i r e , or lack  shrink  painful. indulging, tissue  was o f t e n  that the  t o o much t o a l l o w  intercourse: But I I left  t o g e t back  i t out that  t o put i t i n again  said  everytime  i t was h a r d  want t o l e a v e  because  long; I  I was so  to shrink. I should  the operation,  too tender  granulation  both  intercourse  i t was s h r i n k i n g ;  i t was g o i n g they  However,  Both women were c o n c e r n e d  I didn't  At f i r s t  excessive  t h e mold o u t f o r 1/2 an h o u r .  that  i n a hurry  from  6 months.  o u t f o r 1/2 an h o u r ,  inside.  intercourse  frequent  and e n j o y a b l e leave  mold  skin of the reconstructed  v a g i n a would  I could  it  t o wear t h e v a g i n a l  the f i r s t having  that  o f f and f a l l o u t .  t h e new o p e n i n g  due t o p a i n ,  reconstructed  P:  to tear  the grafted  and p r e v e n t  shrinking  It's a f e e l i n g  f o r 3 months, t h e n have f r e q u e n t  condition  vagina  i s going  women were t o l d  constantly to  b o t h e r s me.  start then  in there."  intercourse 6  they  said  "No,  i t  I had t o o much  t i s s u e g o i n g on; i t would be t o o  But by 3 months  I should  have been  b u t I wasn't, and we were w o r r i e d  s h r i n k a g e because  about  I had b r o k e n two m o l d s .  T h i s woman t r i e d by  using a d i l a t o r ,  "poking"  into  t o keep t h e v a g i n a  but she found  the painful  from  shrinking  i td i f f i c u l t  t o keep  vaginal area:  R:  D i d anyone m e n t i o n  using a dildo?  P:  Not i n so many words, b u t I went o u t and g o t one anyway, and I was u s i n g t h a t that  last  after  supposed  not it  i t was a l m o s t  and t h e y  shrinkage  everyday,  f o rthe f i r s t  and I j u s t  t h e r e would  6 months.  think  on my g e n i t a l s ;  another easier had  i t every  second  day.  i f I s h o u l d have j u s t  an a c t i v e  lover,  T h e s e women a l s o  kept  for  would  i t be  But i t ' s t o o l a t e which  a lover.  I think  now, u n l e s s I  I don't.  described that  experience of intercourse after  I don't  at i t ,  they  p a r t n e r s t o be g e n t l e ; e s p e c i a l l y  I took  P r o d d i n g and  damage, b u t I o f t e n  3 months, f o r my own s a k e , f o r me now?  I'd had  doing i t ;  had g o t t e n t o be t o o much.  I've done any i r r e p a r a b l e  wonder  I was  i n t h r e e times a  a l r e a d y w i t h my v a g i n a and I s t o p p e d  i t just  that  c o u l d n ' t do i t ; I c o u l d  p u t t h a t much a t t e n t i o n  poking;  P:  4 months  were c o n c e r n e d  t o put i t (the d i l a t o r )  l i k e maybe d o i n g  sexual  I got r i d of  I wasn't w i t h my husband t h a t  tissue  day,  I guess  the surgery  because be  mold.  after  vaginal  needed  their  f o rthe f i r s t reconstruction:  i t must have been  about  4 months a f t e r fabulous.  t h e o p e r a t i o n , and  I realized  that  as  that  sensibilities  i t really  o f wine b e f o r e  he was  needs and out  put  h i s own  painful  painful;  10 t o  is  also,  15 m i n u t e s  physically,  important  because having  and  do  my  tell  t h e man; last  couple  The  positions,  doctor  but  enough t o s t a r t  be  weak as w e l l .  I get  I've  never  t o my  and  still  needs  does  hurt  incredibly  but than  less.  others;  think they've actually  I should been w i t h  1  i t depends  try  on  the  really  more different  anyone  long  experimenting.  s e c o n d woman a l s o d e s c r i b e d n e e d i n g  g e n t l e and  my  was  It  I could care  i t was  to  a b s o l u t e maximum,  lot, i t really  says  it  my  then  in  went a l l  was  I don't  and  He  And  is sensitive a  and  as w o n d e r f u l  ahead o f t i m e ,  of times at a l l ,  t o me  vaginal/peni1e  some a r e more s e n s i t i v e  painful.  to  be  few  lucky  (of  Unless  passionate, partner  understood  The  hurts  intercourse.  aroused  sensitive  I was  t h a t a man  it still  I was  p o s s i b l e f o r me.  i n t e r c o u r s e ) at t h a t time and  t o have a  love.  i t would  do  sensitivities.  needs s e c o n d a r y .  that as  and  did help  I made  extrodinarily  t o make s u r e least  absolutely  I d i s c o v e r e d t h a t champagne can  wonders t o deaden  glasses  i t was  communicative  because of the  her  partner  severe  vaginal P:  pain:  My husband was v e r y the  doctor's  office)  what was g o i n g and  supportive. every  like  explain  t o each o t h e r ,  that  he was h u r t i n g  (intercourse)  f o r me, and I g u e s s  me, and we had t o  but i t ' s not going  t o be  forever.  She d e s c r i b e d during  We t r i e d  I t was p a i n f u l  he f e l t  like  t i m e w i t h me so he knew  t o happen.  i t was ok.  He was t h e r e ( i n  her f i r s t  the intensity  of the vaginal  experiences of intercourse  pain  after  surgery: P:  I t was j u s t  like  with  a knife;  make  i t as s h o r t  but  somebody  I was s c a r e d  better  must  months  persist  intercourse surgery  after  f o r months  (Cairns  returned  slowly  partner,  painless  intercourse  and u n s a t i s f a c t o r y  that  vaginal  women  attempts a t  reconstructive  1986).  their  and o n l y  sexual after  d e s i r e and  vaginal  pain  decreased: R:  When d i d you s t a r t  pain  described  I t i s known t h a t  and V a l e n t i c h ,  B o t h women s t a t e d arousal  almost  after  and t r y i n g t o  a l l t h e time.  surgery.  in painful  time,  because o f t h a t  woman, who had a r e g u l a r  sometimes e x p e r i e n c i n g several  each  as p o s s i b l e  i t ' s getting  This  was c u t t i n g me  feeling  sexual  desire or  t e n s ion? P:  Only  recently  talk  about  getting it's  it's  create  Just  sometimes.  t h a n when  reported  that  increased  i s there  it  is  but i t ' s  as i t used t o  I can't  I c a n do. I can f e e l  I had t h e mold  There's tight  do; i t ' s v e r y It f e e l s  that  it  like is  i n , but i t doesn't  shrinking  during  there.  the surgery  I haven't  infrequent  and  reconstruction)  because  had enough  tissue  have enough  intercourse  my God, what  shrinkage? this  and i t i s t i g h t  i s , and i t i s p o s s i b l e  i t open and do some l i t t l e  I was w o r r i e d ,  i t ' s quite  frequent  The t i s s u e has s h r u n k  where t h e s c a r  through  tissue  her  at the i n t r o i t u s  intercourse.  tissue  and s c a r  intercourse:  pain  I don't  vaginal pain  (12 months a f t e r  go  that  s e c o n d woman, who d i d n o t have a r e g u l a r  experiences with  cut  don't  r e c e n t l y , maybe 2 weeks,  The p a i n  a few t h a t  We  any p r o b l e m s .  was c a u s i n g  if  very  feeling  i t ' s n o t as u n c o m f o r t a b l e  swollen  shorter  surgery).  i s that  T h e r e a r e some p o s i t i o n s  painful.  P:  Just  been much b e t t e r .  be.  partner,  i t , but t h e r e  better.  bearable;  The  (18 months a f t e r  I mean  a l l again,  t h e y may have t o  minor  i f there  I didn't  that  surgery  there.  i s t o o much  want t o have t o  but t h e r e  wasn't t o o  much;  i t ' s just  tissue  i s quite s t i f f .  my v a g i n a that it  be l o n g e r  would  now,  make  just  During  t h e second  later,  as w e l l .  is  deep  inside  I t ' s been more  very  that's  interview  painful,  vaginal  severe.  depressed  The r a t e o f i n t e r c o u r s e  The l a s t  i t f o r at least  s o m e t h i n g , and now  time  worth t h e p a i n . said,  "Look, t h i s  painful, there  is ridiculous,  last  I could  was i s not  week and I  i t ' s just too  and I want t o know how much s h r i n k a g e  been?" And he s a i d  much s c a r  love i t  Usually  The p l e a s u r e  I went t o my GP  isn't  I made  10 m i n u t e s , which  I can't.  that  as s h e had e x p e c t e d :  was t o o p a i n f u l and I had t o s t o p . sustain  6  during  a b o u t t h e same as i t a l w a y s was w h i c h sporadic.  I  study,  pain  She f e l t  i s g e t t i n g worse.  much; v e r y  and I  f o r sure, i t  for this  r e c o n s t r u c t i o n was n o t h e a l i n g The p a i n  i n and  too p a i n f u l .  she s t a t e d t h a t  i n t e r c o u r s e was s t i l l  goes  10 o r 15 m i n u t e s .  love everyday,  be s i m p l y  i s that  sometimes when  painful,  and i t ' s s t i l l  go f o r more t h a n  couldn't  P:  problem  so t h a t  t h e end, c a n be v e r y  a year  can't  the  The o t h e r  a l s o at the entrance  than  months  could  where t h e s c a r  immediate t h r u s t , when t h e p e n i s  hits  and  at the entrance  there  t i s s u e and s h r i n k a g e  has  i s obviously too at the entrance  but  112 also  inside,  Either if  tissue.  g i v e me some e s t r o g e n  love a f t e r  i t was n e v e r  doctor  thought  entrance there  P:  as p a i n f u l  I should  feel  Even  with  the  just  hits  i t h u r t s , you f e e l  sick  afterwards;  like  This  severe  caused  g r i e v e d her i n a b i l i t y I t h i n k , b e c a u s e now  It  of proceeding  just  just  function. thought  nauseated  very  a douche,  i n t h e wrong i t shoot I actually  through felt  i t hurts  sexual f u n c t i o n i n g :  s o much,  I have a  i t may be j u s t  o f weeks, t h i n k i n g  be a b l e t o .  c u t dead.  I've become v e r y s a d  I'm n o t f u n c t i o n i n g n o r m a l l y ,  I would  even  from t h e p a i n .  f o r normal  because  couple  I could  her t o a v o i d i n t e r c o u r s e .  won't be s u c c e s s f u l .  the last  I mean  t h e wrong way,  i t ' s so t e n d e r .  fear  at the  i n t e r c o u r s e , t h e end o f  y o u r whole body,  pain  The  t h e p a i n , and I've b a r e l y  I'm h a v i n g  you know,  started  uncomfortable,  pain  i f I'm d o i n g  When  penis  I first  i s , but I don't,  inside,  touched.  know  the scar  as i t i s now.  only  tenderness  spots.  shock m y s e l f  spot,  t o help  i t was  where t h e s c a r t i s s u e  i s such  painful  the surgery  as w e l l .  or I don't  A l l I c a n s a y i s t h a t when  making  She  been some n a r r o w i n g  I ' l l have t o u s e a d i l a t o r  they'll  but  there's  I can't t h e way I  Clearly,  vaginal  caused  prolonged  sexual  enjoyment:  P:  and s e v e r e p a i n  In g e n e r a l , problem;  reconstruction  h a v i n g orgasms  i t ' s the pain.  difference entirely  and p r o b l e m s  i s not r e a l l y  I haven't  with masturbation.  true;  f o r t h e s e two women  I suppose t h a t ' s not  i t seems t o t a k e more e f f o r t .  definitely  thing. areas  There  women answered with  Only  t h i n g , more t h a n  there  t o o much  study  i t  a physical in certain  a r e some  places  feeling.  on v a g i n a l  a questionnaire  I  b u t I'd s a y  i s some l o s s o f s e n s a t i o n  isn't  In a m e d i c a l  surgery  a mental  inside the vagina,  where t h e r e  my  n o t i c e d any  have had orgasms w i t h my new v a g i n a , was  with  reconstruction,  8  1 2 months a f t e r  at least  the following r e s u l t s :  2 patients  intercourse;  have used t h e n e o v a g i n a f o r  in 1, the experience  satisfactory,  i n the other  i s repeatedly  i t i s only  satisfactory.  Five  patients  not  interested  i n sex and t h e s e x u a l  was  unimportant  that  t o them....In g e n e r a l ,  seemed t o have a poor technical  stated  partially they  were  intercourse the patients  understanding of the  aspects of constructing the  neovagina....We hoped t o l e a r n more a b o u t t h e  psychosexual  benefits of the procedure through the  use o f t h e q u e s t i o n n a i r e ,  but only  8 patients in  the neovagina group returned  the questionnaire,  many a n s w e r s w e r e n o t f i l l e d  i n (Lacey  p.  pain of vaginal  reconstruction  counselling after surgery  medical  study.  Yet, the study's  rate of sexual discuss  e t a l , 1988,  1280 - 8 3 ) .  The sexual  and  and t h e need f o r  was n o t n o t e d results  in this  indicate a  high  d i s s a t i s f a c t i o n and a l s o a r e l u c t a n c e  psychosexual  issues, at least  to  through  quest ionnai res. Severe pain during  i n t e r c o u r s e was a l s o r e p o r t e d  t h e w o m a n who h a d a p a r t i a l reconstruction. and  labia.  v a g i n e c t o m y and no  She had severe  swelling  At the time of the f i r s t  that unsatisfactory  by  i n the vagina  interview,  she  intercourse and her lack of  felt  sexual  d e s i r e could p o s s i b l y end her marriage: P:  I care about t h e vagina, before,  t o have a good l i f e  b u t I know i t ' s n o t p o s s i b l e .  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 , 2 years, doctor  b u t I'm s c a r e d  that t h e sexual  after the operation have that. sexual  life,  My  doctor  he c o u l d do i t i n  about i t .  I told the  l i f e d o e s n ' t w o r k ; we  and i t hurt.  like  tried  I d i d n ' t want t o  I s a i d , " I f i t ' s not p o s s i b l e t o have a then  I'd r a t h e r d i v o r c e  him."  I told  114  him that so he knows. think  it  For the husband,  lessened and she began to enjoy the s w e l l i n g and pain  d e s i r e even 1 2 months a f t e r  P:  the vaginal  intercourse.  in the vaginal  that the cancer would r e t u r n ,  fears  don't  i s enough.  In the next 6 months, however,  partner  I  needed sexual  area,  depressed her  surgery.  doing t h a t ,  and her  fear  sexual  c o u n s e l l i n g in order to reduce her  is getting  better.  but h e ' s the man.  have any p a i n .  However,  T h i s woman and her  and i n c r e a s e communication between Our sex l i f e  pain  Sometimes  them:  I always Sometimes  I feel  avoid I  don't  l i k e making  love.  My husband d o e s n ' t say how f a r  he i s going i n ; he  just  When there i s no  says about the s w e l l i n g .  swelling, just  I feel  better.  lying there.  Otherwise  it  even  He does put h i s penis i n s i d e  vagina and I d o n ' t  know how f a r ,  I am always a f r a i d  so I'm  h e ' s going to make a hole  stiff  maybe a l l  I've  i n s i d e to see how much vagina i s  left.  I don't  the  and t e n s e .  in me.  to do t h a t .  hurts,  the way.  I think  never  felt  I'm  afraid  think he enters that much  because in the evening there i s more s w e l l i n g . Sometimes he s t a r t s said, all  "If  and I s a y , "No."  you want to do t h i s then  let  One day I me l i e  down  day long so there won't be so much s w e l l i n g . "  The  doctor  says,  stretch."  will  i t would  get cancer  be l i k e  again,  lack  of vaginal  and  massage creams s u c h  not  know  P:  and i t w i l l t h e c a n c e r was  before.  then  I believe  i t (sexual  if  i ftheir  desire)  lubrication  was s o l v e d  as c o c o n u t o i l .  reconstructed  by g e l s  The women d i d  v a g i n a s would  ever  lubrication:  Not enough excited  lubrication,  then  anyways,  enough, t o t e l l  make a d i f f e r e n c e . I would  I've n e v e r  longer  If t h e r e  isn't  that  u s e a g e l , and I u s u a l l y  and t h a t  worry; t h a t  I wouldn't  have enough d e p t h  regular  intercourse  itself. mean  that  It's c e r t a i n l y  I can s t i l l  would  was a n o t h e r  probably  be a r o u s e d  i f I had  rectify  i t used  but t h a t  main  f o r proper  t o me t h a t  n o t what  anyways  vagina i s  the other,  I t was e x p l a i n e d  lubrication  would  than  penetration.  been  you t h e t r u t h , t o r e a l l y  b e c a u s e one s i d e o f my r e c o n s t r u c t e d  pain  t o be; I does  intrude. For  these  back s l o w l y . intercourse The  I  come back.  The  produce  intercourse  I f I knew f o r s u r e t h a t  gone t h e n don't  "More  3 women, s e x u a l  desire or tension  They began f e e l i n g 6 t o 12 months a f t e r  women s t a t e d  that  regaining  came  a desire f o r the radical sexual  surgery.  d e s i r e and  117 enjoying  sexual  indicated  intercourse  t o them t h a t  was s i g n i f i c a n t  complete  recovery  because  was g o i n g  this t o be  p o s s i b1e: P:  I'm s t a r t i n g t o have p l e a s u r a b l e My s e x u a l  tension  summer  (1 y e a r  giving  up on t h a t ,  really  glad  didn't  When  hurt  I first  i tdid.  inside;  like  make l o v e getting there  into  awhile I  t h a t much t h a t I  i t ' s a good  had i n t e r c o u r s e ,  man.  Now, i t  feeling.  w h i c h was a b o u t 4  I recall  really  recall  overwhelming  to this  quite  f o r intercourse.  sex, but I don't  desire,  I was k i n d o f  It took  i t was h u r t i n g  months a f t e r s u r g e r y ; having  this  b u t i t came back and I was  have any d e s i r e  doesn't  come back u n t i l  after surgery).  that  guess because  P:  didn't  feelings inside.  enjoying  a huge amount o f  desire,  like  I wanted t o  I j u s t remember t h a t  i t , I really  enjoyed  i t , and o f c o u r s e  was a c e r t a i n amount o f d e s i r e t h e n ,  build-up  or physical  feelings.  once  The l a s t  b u t no  time I  made l o v e , w h i c h was a b o u t  a month o r s o ago, t h a t  was  I've e v e r  probably  buildup Although professional routinely  the strongest  of desire. women  So, i t ' s s t a r t i n g t o come back.  i n other  sex c o u n s e l l i n g ,  provided  had; o f a c t u a l  (Cairns  studies this  have " w i s h e d " f o r  s e r v i c e has n o t been  and V a l e n t i c h ,  1986).  Concerns about example, P:  think  before.  feels  surgery, f o r  I ' l l be a b l e t o have orgasms One p a r t o f t h e l a r g e l a b i a  numb, and t h e c l i t o r i s  probably  going  restored. wouldn't the  this  needed t o be e x p l o r e d :  I don't did  a c h i e v i n g orgasm a f t e r  t o be a w h i l e  I was j u s t  before  still  So i t ' s  the feelings are  under t h e i m p r e s s i o n  I  that  be a b l e t o have one ( a n orgasm) b e c a u s e o f  new v a g i n a .  nothing  i s numb.  I  like  I have t o be s a t i s f i e d ,  I c a n do; o r i s t h e r e  something  there's they  c a n do  about i t ? Finally, did that  n o t have r e c o n s t r u c t i o n a f t e r her sexual  months a f t e r with  1 woman, who had a t o t a l  the surgery,  d e s i r e and a r o u s a l  surgery.  vaginal pain  reconstruction.  returned  stated  within 3  However, she d i d n o t have t o d e a l  and a l s o r e g a i n e d  much more q u i c k l y t h a n  vaginectomy but  physical strength  t h e women who had v a g i n a l  She s t i l l  experienced  orgasm by  m a s t u r b a t i ng: P:  I do m a s t u r b a t e . surgeries  than  surprising intercourse but It  only feels  I probably  I have s i n c e , w h i c h  because  I haven't  s i n c e my s u r g e r y  once fine;  d i d more b e f o r e my  i n awhile.  i s kind of  had any s o r t either.  It's just  I mean, I c e r t a i n l y  of sexual  I still  do,  as p l e a s u r a b l e . have  outer  sensations  with  no p r o b l e m .  When e n c o u r a g e d described but  by t h e i n t e r v i e w e r ,  some o f t h e i r  most were h e s i t a n t  detailed sexual their  sexual  partners  t h e y were c o n c e r n e d  and t h e s a t i s f a c t i o n  f o r many months a f t e r t h i s  The  in the autobiograpical  n u r s e who had r a d i c a l  give  surgery  about  of their  surgery.  problem of r e c e i v i n g sexual  described  experiences,  T h e s e women d i d n o t r e c e i v e  c o u n s e l l i n g although enjoyment  needs and  and d i d n o t s p o n t a n e o u s l y  descriptions.  sexual  t h e women  c o u n s e l l i n g was  essay  of a  f o rvaginal  student  cancer.  This  young woman had t h e knowledge and a s s e r t i v e n e s s t o arrange that  sexual  c o u n s e l l i n g f o r h e r s e l f when s h e r e a l i z e d  s h e was h a v i n g  enjoyment  serious  problems with  a f t e r her surgery:  I returned nerves.  despair  t o t h e s u r g e o n t o ask a b o u t my p e l v i c  i told  sensation  him I had n o t been a b l e  and a s k e d ,  and a n g e r were a p p a r e n t .  c u t any o f t h o s e n e r v e s  such  p r o b l e m s were " A l l i n my h e a d . "  h i s a t t i t u d e and r e a l i z e d  know how t o a d d r e s s  that  s e x u a l i t y with  My  He d e f e n s i v e l y  me he h a d n ' t  The  t o have  "What a b o u t orgasm?"  told  at  sexual  and any  I was e n r a g e d  he j u s t  didn't  h i s patients.  p s y c h i a t r i c n u r s e f r o m t h e h o s p i t a l was my  resource.  She was g r e a t ,  both  next  b e c a u s e she l i s t e n e d  1 20 as  I v e n t i l a t e d and b e c a u s e s h e s a i d she d i d n ' t  know how t o answer my q u e s t i o n s ; limitations she  openly  had t o know  and  reason  needs.  the  needs  sexual  definitions eliminated  about  For  female s e x u a l i t y i n  by men who h e l d  i n England.  published  inaccurate  female s e x u a l i t y which  the r e a l i t y  has r e p r e s s e d  of female s e x u a l i t y .  was d e f i n e d  profession  1978).  in particular,  (1987) comments t h a t  power  do n o t have a  and a p p r o v e s o f f e m a l e  and E n g l i s h ,  s u b j e c t i v e experience  medical  o f female  an i n d i v i d u a l ' s  defines  language,  e c o n o m i c , and s o c i a l  problems  counselling  repression  needs b e c a u s e t h e y  (Ehrenreich  19th c e n t u r y  my  knowledge  and women a r e r e l u c t a n t t o seek  accurately  English  with  f o r t h e lack of sexual  experience,  example, Mort the  He was j u s t  49).  Language c r e a t e s  language which  The  l i k e mine.  t o deal  i s the h i s t o r i c a l  f o rtheir  sexual  vaginas  1981, p.  surgery  subjective help  created  the understanding  A major  sexual  experience  I needed b e c a u s e he had t h e m e d i c a l  (Burger,  after  T h i s man had had  r e f e r r e d me t o  men who wanted t o become women and who had  surgically what  She d i d n o t f e e l  i t a l l and h e l p f u l l y  a psychiatrist. treating  and f r e e l y .  she a d m i t t e d h e r  of female sexual  political,  The e m e r g i n g and r e p r e s s i v e effectively f e e l i n g s and  121 desire.  Women's s e x u a l  f e e l i n g s were v i e w e d  and  developed  experience.  only  other in law  influential  sex of  c o n t r a r y t o an  (Mort,  lasting  experiences her  female sexual satisfaction after  b e n e f i t s of  surgery  but  of myself  masturbation  f r o m my  family.  i t a t home.  I knew t h e s e  your  masturbation  stretched a mile  surgery.  one  the  idea of  of  long.  My  cracks  going  true,  but  myths  about  However,  sensations  after  I had my  l e a r n i n g went a g a i n s t  s t r o k i n g my  to s t i m u l a t e the  ever  funny  hands or  people.  t o have good  This process  upbringing; genitals  for other  cancer:  remember  t h i n g s weren't  was  t o r e l e a r n how  sexual c o u n s e l l i n g  remember  masturbation  sexual  been a t a b o o t h a t I  I don't I do  repress  as " s e x u a l l y  had  w a r t s on  to  in achieving  for gynecological  thought  and  (1981) d e s c r i b e s  language t h a t c o n t i n u e s  the  developing  crazy.  Burger  confirms  discussing about  sexuality. a  needs  women's s u b j e c t i v e  success  disabled" learned  on  Her  never  and  inherent  female sexual  needs.  radical I had  with  a l l powerful  repressed  effects  of t h e i r  experience  Many p h y s i c i a n s  1987).  These d e f i n i t i o n s have had  dormant  professionals believed that equality  d e s i r e was nature  with  as  nerves  I knew d i d t o t h e m s e l v e s .  was  thighs  and  something  I needed  my  no  permission.  122 The p s y c h i a t r i s t device  w h i c h gave me  squeeze with rays  gave me  this  e x e r c i s e s t o do w i t h  the f e e l i n g  new  vagina.  o f hope began t o f i l t e r  (Burger,  1981,  p. 5 0 ) .  of being  New  a  able to  d o o r s opened  in slowly  and  Summary In t h i s After  second major  Radical  Surgery  women d e s c r i b e d after  radical  months t o  being  Physical  For Gynecological  experiencing  surgery.  regain  activities.  category,  prolonged  They  needed  The women e x p e r i e n c e d  physical  inhibited The  regaining  serious strength  during  even  1 year  women a l s o had p r o b l e m s w i t h  c o n s t i p a t i o n , and b l a d d e r  Problems with  bladder  this  time.  which  after  surgery. bowel  functioning.  f u n c t i o n i n g were s t i l l  present at  time o f t h e i n t e r v i e w s . Vaginal  pain  from  diarrhea,  incontinence,  the  everyday  frustration  complications  weakness  3 and 12  and resume  i n a c t i v e and d e p e n d e n t on o t h e r s  Some women d e v e l o p e d  Cancer, the  between  adequate s t r e n g t h  Recovery  during  healing  mold's f i t ,  reluctant  with  granulation  to discuss sexual  third  their  major  Surgery  lubrication,  desire.  sexual  and d u r i n g  and c l i t o r a l The women were  needs and needed  counselling after  and l a s t  image A f t e r R a d i c a l  sexual  mold  severe  problems with t h e  tissue,  loss of l a b i a l  and d e p r e s s e d  professional The  The women e x p e r i e n c e d  shrinking,  sensation,  r e c o n s t r u c t i o n caused  t h e change o f t h e v a g i n a l  intercourse.  vaginal  after  category  this  surgery.  is Self-  For Gynecological  Cancer.  This  category  beliefs  contains  t h e women's d e s c r i p t i o n s  and f e e l i n g s about  structure  and f u n c t i o n  women's d e s c r i p t i o n s  cancer  affected  and c h a n g e s  self-image  of self-worth  after  o f how  i n body  and t h e  this  surgery.  III.  SELF-IMAGE AFTER RADICAL SURGERY FOR  The  GYNECOLOGICAL CANCER  third  descriptions cancer and  major c a t e g o r y  o f how  affected  radical  herself.  and  Structure 1. B e l i e f s  Before cancer  And  d i s c u s s i n g how  commonly  the  Metaphorical describe  example,  beliefs  and  socially  specific  l a n g u a g e used socially  self-image  ways.  1978).  illustrate  how  subjective experience That  i s , the  meanings f o r the  has  as  to  cancer.  f o r cancer,  of  to d e s c r i b e cancer  immoral  developed  self-image  (Sontag,  have c a n c e r  f o r the  is  or  individuals  c r e a t e s meaning  language which  cells,"  the  on  to  l a n g u a g e used  " m a l i c i o u s growth," " e v i l  effects  about  i t is useful  d i s e a s e s such  monster," n e g a t i v e l y a f f e c t  negative  feelings  historically  symptoms o f m y s t e r i o u s  who  Self-Worth.  cancer.  l a n g u a g e has  However, t h e m e t a p h o r i c a l  i n Body  Cancer  t h e women's s e l f - i m a g e ,  to describe  on  sub-headings:  Changes  i n f l u e n c e of m e t a p h o r i c a l  used  beliefs  effects  P e r c e p t i o n of  F e e l i n g s About  affected  discuss  under t h r e e  F u n c t i o n , and  t h e women's  for gynecological  surgery's  F e e l i n g s About C a n c e r ,  and  from  a woman's u n i q u e  The  s e l f - i m a g e were o r g a n i z e d Beliefs  surgery  s e l f - i m a g e or  images a b o u t  developed  for  "hungry  Such language in  metaphorical created evil  and  s u b j e c t i v e experiences  o f many  individuals  Punitive such  notions  notions  Cancer  of  experience  cancer:  o f d i s e a s e have a l o n g h i s t o r y and  are p a r t i c u l a r l y  a c t i v e with  d i s e a s e and a demonic enemy.  dread;  c o r r u p t i o n , decay,  weakness, and i m m o r a l i t y Therefore,  although  (Sontag,  cancer  1978, p. 1 2 ) .  organizations are  t o p r o t e s t , t h e m e d i a and w e l l - k n o w n  speakers,  f o r example,  to describe evil  This  internalized  many  individuals  diagnosed The influence negative described  with  social  and s o c i a l l y  cancer  acts. causes  cancer.  women's d e s c r i p t i o n s show t h a t t h e s u b j e c t i v e of metaphorical effects  language f o r cancer  on s e l f - i m a g e .  her v a g i n a l  cancer  felt  her v a g i n a .  horror  about  removed, she s t i l l  felt  These f e e l i n g s  image b e c a u s e t h e y  F o r example, one woman  h e r i f she t o u c h e d Even a f t e r  dislike  the reconstructed  it.  evil She  the cancer  was  and f e a r a b o u t h e r  had a n e g a t i v e  prevented  had  as an i n d e p e n d e n t ,  attack  accepting  immoral  h o r r o r and shame when t h e y a r e  f o r c e w h i c h would  vagina.  political  i n u s i n g t h e word  message a b o u t  to feel  subjects  pollution,  beginning  persist  lethal,  The t e r m ,  has become a metaphor t o d e s c r i b e  deepest  "cancer"  cancer.  i s t r e a t e d as no mere d i s e a s e , b u t a  shameful cancer,  who  effect  on  self-  h e r f r o m e x p l o r i n g and vagina:  P:  When t h e y kill  me,  told  me  I used  to feel  i n s i d e my v a g i n a , There  I had c a n c e r ,  an e v i l ,  even t h o u g h  there,  i t was a l m o s t  something it.  was g o i n g  t o touch  as i f t h e " r a t " would that  feeling  t o a t t a c k me i f I  myself,  i s a change.  day; I have t o f o r c e  t o know how i t f e e l s i n  take  a m i r r o r t o look and s e e what t h i s  like  down h e r e ,  and now  in the h o s p i t a l .  myself  i n months  During  her second  extremely  After  I wished I don't  feelings,  she gained  I didn't  a l l looked  I had i n t h e f i r s t think  interview f o rthis i n a novel  negative feelings  this  the surgery  I touched  afterwards.  a scene  recalling  that  approached  there  woman remembered  P:  I knew t h e c y s t was  case  weeks  touch  malignant r a t .  I was g o i n g t o  I t was r e a l l y  And even now, t o t h i s  myself  her  vicious,  examine m y s e l f ,  b i t e o f f my hand.  i t might  as t h o u g h t h e r e was a r a t  was no way i n t h e w o r l d  because  and t h a t  disturbing  scene  insight  which  about  study,  this  contributed to  cancer.  By  and e x p l o r i n g h e r  about  her r e l u c t a n c e t o  her vagina: I'd r e a d  some book, and t h e r e was t h i s  the p o l i c e  had f o u n d  scene  where  a body o f a woman, and i t had  been a r o u n d  f o r awhile,  the vagina,  and t h e y  and t h e r e was a r a t i n s i d e  d e s c r i b e d i t coming o u t o f t h e  128  vagina.  And I g u e s s t h a t  actually,  i t was a book  a woman who had  cancer,  so o f c o u r s e  i ta l l clicks  that's  what my  imagery  But i t was s o r e a l .  in a million  me.  I couldn't  metaphorical feelings  shameful  o f h o r r o r were  about  not f e e l  horror  her  vagina.  Instead,  cancer  cells  feel  It  l i k e me,  just  some c e l l s  before  they  t h e f e a r and  vagina. f e a r f u l or  One woman s t a t e d s h e the cancer i n  s h e b e l i e v e d t h a t h e r body had f o r a reason:  like  i n s i d e me w i t h  a bump.  i t ; i t wasn't i n my body  spread.  something t h a t have  E x p l o r i n g her  f o rreducing  cancer.  t h e growth  t o touch  realized  due t o n e g a t i v e  o r shame when t o u c h i n g  I could  there  partly  n o t a l l women had o b v i o u s  feelings  felt  feeling.  cancer.  step  her r e c o n s t r u c t e d  did  created  that  myself  and h u r t  image, she s u d d e n l y  language about  However,  together;  I have examined  i t would a t t a c k  overcome  was a n e c e s s a r y  accepting  could  that  As s h e d e s c r i b e d t h i s her f e e l i n g s  is.  years  because o f f e e l i n g  P:  about  i n my mind;  breast  Not  that  image s t u c k  fingers.  T h e r e wasn't anything  evil.  t h a t we s h o u l d  I always f e l t  I had c r e a t e d .  I l e t my body  my  any f e a r I t was  get r i d of  i t was more  I felt  like;  like  "Why  do t h i s ? "  T h i s woman a l s o f e l t  that having  cancer  and b e i n g  seriously  ill  had p r o d u c e d  image and a b i l i t y P:  t o enjoy  I t wasn't c l e a r - c u t from had  positive  that  better.  to really  participate in  As a p r o c e s s  of having  I've become a l o t more  this  and  I'm f a r more a p p r e c i a t i v e o f e v e r y t h i n g . I'm f a r more  people  and my  g e t angry  i n tune  just  t h e way t h a t t h e y  struggle think  buried  than  and f e e l i n g s  feelings  artistic  are.  (Segal,  release  feelings  Such  a greedy  there death.  women used  of fear  i n the darkness,  cancer  are often  These  by dream  with  analysis  F o r example, i n cancer,  titled  cancer:  He was w a i t i n g f o r me stinking  I  surgery.  creative writing to  about  monster.  not t h a t  1978).  1984).  a book a b o u t women's e x p e r i e n c e s  glad  t h e r e was b e f o r e .  having  (Sontag,  And  t h i n g s be  I was b e f o r e my  c a n be e x p l o r e d  expression  of Ourselves,  There's  I  I listen to  and I'm j u s t  letting  like  about  i n the subconscious  suppressed  Just  t o change t h i n g s  I'm h a p p i e r  Beliefs  a l o t more.  a t t h e weather,  cancer  spiritual,  with myself;  intuition  t o be a b l e t o be t h e r e .  Bits  t o me t h a t I  being  my f e e l i n g s  and  t o be f i n e  and  think  ill,  I was g o i n g  I t was o b v i o u s  t o do s o m e t h i n g  on h e r s e l f -  life:  the beginning.  getting  effects  o f f e a r s and  H i s t e e t h showed when he s m i l e d  a t me and  they  already dripped with  a t me and I h e a r d to  close  around  Therefore, language image, used  i t appears  example,  anger,  All Their caused  about  After  and  causes  common e m o t i o n s about  end." going be The feelings  the cancer  times,  their  freaking  return.  and f e e l  future: t h e nodes  i n my  i n f l a m e d and h a r d ,  o u t and g o i n g  t o the doctor  b u t i t was ok.  f o r months a f t e r  never  the surgery.  really  i t was c a n c e r ,  L i k e you c a n l i v e  somewhere e l s e . women needed  r i d o f i t . When I  a little  frightening  support  physical  " I t ' sthe  longer, but  kill  The w o r r y w i l l  emotional  "Well, the  But t h e c a n c e r may  I thought,  t o come back and f i n a l l y  about  would  bodies  I could feel  i s gone and I'm f i n e . "  that  cancer, f o r  on s e l f - i m a g e s i n c e i t  planning f o rtheir  come back; y o u ' r e heard  having  c a n a l s o be  shame, and f e a r .  I remember  cancer  began  on s e l f -  language  and t h e y were d e f i n i t e l y  I thought  ripped  19).  negative e f f e c t s  that metaphorical  the surgery  several  darkness  1986, p.  had a n e g a t i v e e f f e c t  groin,  P:  me (Webb,  t h e women t o d i s t r u s t  uncertain P:  him l a u g h - - a n d  5 women f e a r e d t h a t  fear  H i s claws  even t h o u g h t h e u s e o f m e t a p h o r i c a l  f o r cancer  t o express  blood.  you.  it's  It could  a l w a y s be t h e r e . t o express  symptoms, d e a t h and  dying,  and b e i n g  Expressing fear  physically  feelings  and a n x i e t y ,  therefore, emotional  in a supportive  allowed  improved support  d e p e n d e n t on o t h e r s .  greater  self-image.  would  likely  atmosphere  reduced  s e n s e o f c o n t r o l , and, In a d d i t i o n , r e g u l a r  e l i m i n a t e t h e need f o r  tranqu i1i zers: P:  I read two  i n t h e p a p e r , o r somewhere, t h a t one o u t o f  people  get the cancer  again,  it's  pretty scary.  I guess  it's  really  I'm v e r y  nerve p i l l  scary. helps.  don't worry Intense negative caused  about  feelings  effect  i t ' s an o l d book, b u t tight  i t so much;  on s e l f - i m a g e  feelings  functioning. uncontrollable  intense from  Some women were c o n c e r n e d  that  these  f e e l i n g s m i g h t mean t h a t t h e y  P:  my body.  trust  Sometimes  i n t h e s i d e and c h e s t .  coming up a l l o v e r  pain,  as b e i n g  them  ill:  here,  feelings  kept  becoming m e n t a l l y I don't  which  I shake.  my body.  so I  as e m o t i o n a l l y  uncontrollable  o f f e a r and a n x i e t y  level  a l s o had a  because these  of themselves  weak f o r h a v i n g  this  i t c a l m s me down.  o f f e a r and a n x i e t y  They t h o u g h t  emotionally  but t a k i n g  I t keeps me a t a n i c e  t h e women t o p e r c e i v e t h e m s e l v e s  fragile.  is  i n s o m e p l a c e , so  were  I have a p a i n  I worry  i f the cancer  Everytime  T h a t makes me f r i g h t e n e d .  I get a The f e a r  is  i n my c h e s t , t h r o a t , and back;  feeling, chest  and i t comes from  and i n t o t h e head.  what t o do; t h e n Another suddenly anxiety  interrupted her.  "attacks." related and P:  1 year  after  belief  that  by m y s e l f ;  tricks  sometimes.  on me.  Sometimes  t o f u n c t i o n and  that  these  during  these  feelings  t h e cancer  would r e t u r n  I'm s c a r e d .  I'm a f r a i d  It's  this  It's  a t e n s i o n , almost  tingling  feeling,  At  times  to  something  something,  I'm g o i n g a l l over  or concentrate r e a l l y  o r I had a f e e l i n g I just  to  snap.  I'm a f r a i d  i f something  t h e body.  b u t you c a n ' t  i t came t o t h e p o i n t t h a t  here.  to faint.  A kind of f e e l i n g  I'm s h i v e r i n g ,  be  I get t h i s  t h e same t e n s i o n b e f o r e you  t o t h e o p e r a t i o n room. inside;  My n e r v e s a r e  I g e t so d i z z y ;  sweat on me;  ill  This  I t s c a r e s me t o d e a t h  cold  shake  surgery.  soon d i e :  I'm h e r e  playing  a n x i e t y which  her r a d i c a l  her a b i l i t y  know  I'm c r a z y .  acute  T h i s woman r e a l i z e d  s h e would  go  like  I don't  She d e s c r i b e d h e r f e e l i n g s  t o her f i r m  When  t h e abdomen t h r o u g h t h e And t h e n  woman e x p e r i e n c e d  started  frightened  I feel  i t ' s a hot  have f e a r  that  that  that I  see  it.  I had t o h o l d on h a r d on I'm n o t g o i n g t o  something  i s going  I'm g o i n g t o end up m e n t a l l y  goes wrong w i t h my head.  My  133 mother had it  s a i d s h e had e x a c t l y  a hysterectomy  t h e same t h i n g when s h e  when she was 40 and t h e y  was c a n c e r , b u t i t wasn't.  understand problems after few  why  like  then  I t used  suddenly  depends on what s t a t e people  around  me,  I've n e v e r had  and i t ' s been a l m o s t  the surgery.  days,  I j u s t can't  i t ' s coming so l a t e ; that,  thought  a year  t o happen o n c e  i t s t a r t e d every  I am.  If t h e r e ' s  and I'm busy, t h e n  every  day; i t lots of  i t doesn't  happen. This recent from  woman a l s o  breast  diagnosis,  She  Now  that  that  1 year  also stated  with  h e r husband.  the cancer  that  since  s h e had n o t s h a r e d  returning  from  with  h e r own come  Her s u p p r e s s e d  lack o f emotional encouragement  and s h a r e d  fear  about  d y i n g from  about  s h e was  knew about h e r  the interviewer,  her f e a r s  intense  her cancer  her f r i e n d s because  s u p p o r t had c a u s e d  from  her  anyone, n o t even  s h e had k e p t  t h e y would r e j e c t h e r i f t h e y  expressed  after  h e r c a n c e r would a l s o  Furthermore,  surgery a secret  cancer.  died  s h e , t o o , would d i e .  about  With  i t was e x a c t l y  she b e l i e v e d  fear  the  a f r i e n d who  c a n c e r w h i c h had r e t u r n e d 1 y e a r  back, and t h a t  afraid  her f e e l i n g s about h e r  d i s t r e s s i n g experience with  diagnosis.  and  shared  c a n c e r and  acute  anxiety.  she f i n a l l y  the cancer  returning P:  and  Every just  about  time  pain,  I going  What am  accept  this;  She  I'm  I going  how  are they  i t just  not  afraid  comes of  b e f o r e you  die.  spend t h e  last  i t and t o do  body, i t ' s  t o make my  going  How few  family  to react That  the  t o me?  would  be  Am the  part.  expressing  stated  it.  t o h u r t them t o o much?  became t e n s e ,  but  her  during the f i r s t  she  wanted  experiences  i n t e r v i e w e r was  emotional  Sometimes  length of time  often cried  the  expect  to deal with  days?  worst  first  the  dying:  goes wrong w i t h my  feeling.  I don't  just  I going  that  something  a haunting  o u t when  am  the process of  fragility.  that  after  she  i n t e r v i e w , the  to continue d e s c r i b i n g  and  fears  empathetic  During had  her  b e c a u s e she and  second  expressed  acute  i n t e r v i e w , and  her  accepted  and  felt her  i n t e r v i e w , she fears  anxiety feelings  during  had  the  not  returned: P:  I think that that  I keep  t h e whole p r o b l e m i t inside,  Once you  talk  out.  My  problem; t h a t  o f my  mind;  we  talked.  It would be  and  w i t h my  is  i t needs t o come o u t .  t o somebody, t h e n I felt  i t starts  like  I was  i t a l l disappeared  after  I don't  feelings  great  nerves  have t h o s e  the  t o come going  out  first  time  any  i f a group o f women w i t h  more. the  same  experience helps for  could get together  t o ease t h e f e e l i n g s ;  yourself; just  to find  T h i s woman's s e l f - i m a g e had  experienced  exploring this her  being  and f e e l i n g  technique to feel  had improved  her f e a r s .  She d i s c o v e r e d  emotional  more e m o t i o n a l l y  cancer P:  was  while  fragility  and  effects  t h e women a l s o  o f f e a r and  experienced believed that  that  i f s o m e t h i n g bad l i k e  happens t o someone, t h e r e  i s a reason; i t ' s  something  t h a t they  bad i n t h e p a s t  punished  body,  i t ' s your  for.  When c a n c e r  fault.  happens.  I don't  anything  abnormal.  because  I thought  people  f a m i l y had i t .  thing  that  shameful  a real  how  o r why i t I never d i d  shock t o me  g o t i t b e c a u s e a member o f  F o r me,  cancer  was  always a  I d i d n ' t want t o know a b o u t .  subjective experience and a p u n i s h m e n t  moralistic  d i d and a r e  i t happened;  I t was  cancer  happens t o y o u r  Nobody knows  know how  their  The  caused  d i s e a s e and a p u n i s h m e n t :  I always thought  being  that  stable.  on s e l f - i m a g e when t h e y  a shameful  or s o r r y  because she  supported  lessened  effects  alone  emotionally  on s e l f - i m a g e ,  negative  of being  o u t what  o u t what you c o u l d do.  In a d d i t i o n t o t h e n e g a t i v e anxiety  and f i n d  metaphorical  that having  cancer i s  a l s o comes f r o m p u n i t i v e and  language about  this  disease.  Moralistic that is  language  cancer  due  to  of the  immoral  has  female sexual  woman's s e l f - i m a g e was her  belief  sexual P:  that  f o r example,  r e p r o d u c t i v e and activity  sexual  (Sontag,  organs  1978).  One  obviously negatively affected  g y n e c o l o g i c a l cancer  was  caused  by  by  immorality:  I remember, and  I had  everybody They  friends.  You  long time  came from  d i d she  live  her  and  she  was  person out  ago,  it? she  the  someone t h a t  belong  Was  they  her;  should?"  men).  that  had  something.  and  It was  out t h a t  I had  in society  T h e s e myths and  was  cancer  wondered, didn't  her  cervix,  (having sexual  I thought;  "She's a  when  I found  I thought  that  they  be  d i d about  would  her;  that  s c a r e d o f , and  they  want t o have a n y t h i n g t o do w i t h me Maybe t h e y  It  where  we  no  And  they  should  cancer, a l l her  i t b e c a u s e she  same t h i n g ,  have c a n c e r . found  i t or  caused,  different  t h e same way  don't  away from  a l w a y s known f o r t h a t  with  pelvic  nobody knew t h e n  i t was  as  had  t o move b e c a u s e t h e y  and  get  who  not t o a s s o c i a t e w i t h . "  I had  feel  turned  could catch  life  relations  had  o r how  "How  a friend  just  friends.  a  created b e l i e f s ,  could catch  i t , I just  felt  because I  it.  Once I  that  I didn't  anymore.  fears  about  I'm  g y n e c o l o g i c a l cancer  have been p e r p e t u a t e d frequent  medical  by moral  and m e d i a r e p o r t s w h i c h  women who have e a r l y s e x u a l different higher  partners,  risk  f o rdeveloping  is  cancer  caused  She  and i t s l i n k  that  any p r e s s u r e  this  the issue of  venereal  warts  which  1989).  i s actually transmitted  from p h y s i c i a n s  t h e common f e e l i n g  a punishment protect  Using  f o r sexual  DePetrillo,  that  gynecological  immorality  cancer i s  i s necessary  to  ( D i c k i e , 1989; Lamont and  1980).  reaction of others  had p o t e n t i a l l y  self-image.  to the diagnosis  negative  effects  F o r example, a l t h o u g h  laughed  as s h e d e s c r i b e d  who b e l i e v e d t h a t felt  of t h i s  a feminist perspective to  women's s e l f - i m a g e  The  o r t h e m e d i a t o seek  and u s e condoms t o r e d u c e t h e s p r e a d  explore  still  cancer.  i n t e r c o u r s e , y e t men have  t o women.  friend  with  virus  disease  study  cervical  warts a r e a t  t o f e a r from t h e v i r u s and, t h e r e f o r e , have n o t  treatment  also  that  intercourse, several  has d i s c u s s e d  f r o m men t o women d u r i n g  felt  state  by t h e human p a p i l o m a v i r u s ( D i c k i e ,  p o i n t s outs  little  and a l s o by  and c o n t r a c t v e n e r e a l  A feminist writer cervical  teachings  cancer  of cancer  on t h e women's  one woman i n t h e  her experience  with  a  was c o n t a g i o u s , s h e  r e j e c t e d by h e r f r i e n d ' s a c t i o n s :  P:  I had one f r i e n d , used  she t h i n k s  t o come p r a c t i c a l l y  came one weekend, which  i t ' s contagious.  every  week; now, s h e o n l y  and she b r o u g h t  and  towels  she never  The  women were c o n c e r n e d  dislike,  or r e j e c t  them  cancer.  To a v o i d t h i s ,  h e r own  t h a t f r i e n d s might  i f they  found  some women d i d n o t t e l l  telling  friends  P:  available  would  told  feel.  trouble, this.  emotional  effect  on s e l f - i m a g e and  and I d o n ' t  know how t h e y  I c a n depend on them when  but I don't  want t o t a l k  t o them  about that  i s s o m e t h i n g wrong w i t h me.  don't  want them t o p i t y  going  to treat  maybe r e j e c t  I'm i n  want t o have t h a t f e e l i n g  know t h a t t h e r e  me.  I feel  me d i f f e r e n t l y ;  feel  that  It'sjust  thing  that  a feeling  I can't  tell  that  I  s o r r y f o r me,  me; n o t want t o be f r i e n d s  too.  they  they're  with  knows what happened and t h a t ' s p r e t t y  me f e e l P:  However, n o t  support:  my f r i e n d s ,  I don't  Nobody  their  i n c r e a s e d t h e women's f e e l i n g s o f  w h i c h had a n e g a t i v e  I never  pity,  o u t about t h e  about t h e d i a g n o s i s or s u r g e r y .  reduced  washcloth  d i d before.  friends  isolation  She  me. hard  I have t h i s b i g  anybody; t h a t  i s what makes  alone.  The f e e l i n g terrible.  that  I'm a l o n e ;  I was a l o n e ;  the loneliness,  I couldn't t e l l  that's  anybody.  That The cancer  made me u p s e t ,  especially  women who c o u l d n o t t e l l  also  had d i f f i c u l t y  I'm a v e r y  like  to tell  deal  with  people to  people  that;  private  i t myself.  I never  w i t h my p r o b l e m s ;  liked  went t h r o u g h , what  promised cancer  myself  they that  like to  t o bother  i f somebody  think counsellors  that  can't  really  I'm g o i n g  what I  i f nobody knows help.  I  i f any o f my f r i e n d s  in the future;  comes  t h a t ' s ok; I d o n ' t  d i d n ' t go t h r o u g h  and I b e l i e v e  i t i s , then  help  I don't  h i d e my  and I d o n ' t  I just  I'm g l a d  h e l p me b e c a u s e t h e y  I just  person  my p r o b l e m s ;  t o do i t m y s e l f .  could  talk  quite strong, mentally  me and t e l l s me h i s p r o b l e m s ;  like  All  support:  e m o t i o n a l l y , b u t I'm l i k e  feelings.  about t h e  expressing vulnerable  I always c o n s i d e r e d myself and  I was s i c k .  friends  e m o t i o n s and a s k i n g f o r e m o t i o n a l P:  when  to tell  have  them and  them. 5 women s t a t e d  about  having  cancer  that  they  with  found  i teasier to  individuals  who had a l s o  had  cancer:  P:  There  had been a c o u p l e o f women a t work, who a r e  about  my age, and t h e y  have c a n c e r , up and t a l k  have d i s c o v e r e d t h a t  and i t ' s easy  f o r me;  they  I ' l l phone them  t o them and s a y , "I u n d e r s t a n d ,  and  if  you  e v e r want t o t a l k  them s t o r i e s It's  o f how  different,  t o somebody, f i n e . "  I felt  I offer  and s e e how t h e y  feel.  I t h i n k , t o have been t h r o u g h i t  yourself. Part others  o f t h e women's c o n c e r n  about  having  d i a g n o s i s o f cancer had  cancer  F o r example,  w o r k e r s about  P:  death.  This  belief  1 woman d i d n o t t e l l  the cancer  with  her co-  d i a g n o s i s because she d i d n ' t her or t r e a t  h e r as i f  was d y i n g : I t ' s so awkward, p e o p l e they be  don't  differently.  t o me  absolutely  don't  know what t o do.  treated  react  know what t o s a y , and I just  I would  i n t h e same way t h e y would t h e same way.  There  say  a n y t h i n g , you d o n ' t would  be v e r y  surprised  cancer.  was n o t c o n c e r n e d I don't  to find  this  way about  One woman s t a t e d  about  r e a c t i o n s from  mind t a l k i n g  i f they  don't  about  al o t  out that  me.  However, n o t a l l women f e l t about  have b e f o r e ;  know, and, a c t u a l l y ,  I had a n y t h i n g wrong w i t h  others  people t o  are a l o t of people  t h e r e who have had c a n c e r ; who  people  d i d n ' t want t o  like  out  of  P:  that a  on women's r e l a t i o n s h i p s  want them t o a c t t e n s e when w i t h she  telling  was t h e b e l i e f  meant c e r t a i n  a negative effect  others.  about  cancer.  telling  she d e f i n i t e l y others to cancer: Whether i t ' s  about  cancer,  situation; bit.  in general,  i t doesn't  Sometimes  questions "It's feel  are  none o f like  your  that;  b o t h e r me  I find  coming  or my  particular in the  i t offensive  in the  slightest  if  the  wrong way;  business."  But  i t depends on  the  you  know,  I don't  often  s i t u a t i o n and  the  tone. In summary, t h e metaphorical influenced had  women's d e s c r i p t i o n s  l a n g u a g e commonly  their subjective  s i g n i f i c a n t negative  negative emotional The structure  and  and  being  women's d e s c r i p t i o n s and  function  due  to  showed s i g n i f i c a n t e f f e c t s on descriptions  are  discussed  to  describe  experiences  e f f e c t s on  e f f e c t s were f e a r fragility,  used  showed  and  changes  These  cancer,  i s o l a t e d from of  cancer  often  self-image.  shame a b o u t  that  others.  i n body  t h i s r a d i c a l surgery self-image.  under t h e  next  also  These sub-heading.  142 2.  Changes The  by  In Body S t r u c t u r e  changes  radical  i n body  surgery  significant  And  Function  structure  and f u n c t i o n  f o r gynecological  negative  cancer  had s e v e r a l  e f f e c t s on t h e women's  self-image.  T h e s e c h a n g e s were t h e l o s s o f f e r t i l i t y , enjoyable scars,  intercourse,  of her i d e n t i t y :  P:  I already  removed  terrible  o r my  ability  blow t o me.  I came f r o m a f a m i l y  i s a t home and I b e l i e v e  that's  very  important,  I a l w a y s wanted  they  that  took  space yet,  body that.  still  level  there,  that  with  away  o f need  parts  I never  I identified  and i t was v e r y  fill  o f my  i t was much more t h a n  o f me t h a t  was n e v e r  part  the loss of i t ,  j u s t removing  infertile;  s e e some k i n d  taking  And when  f i g u r e d o u t how t o  i t was more t h a n  now how s t r o n g l y  subtle  like  o r how t o d e a l  I t was some p a r t  until  just  quite  and making me  too, I believe  t o be a m o t h e r .  away, i t was  I haven't  that  where  and I a l w a y s wanted t o have  children;  because  important  t o have c h i l d r e n , was a  mother  that  an  have two c h i l d r e n , b u t t h e l o s s o f my  fertility,  o f me.  body  One woman, f o r example,  how t h e l o s s o f f e r t i l i t y  part  the loss of  the loss of the vagina,  and a u r o s t o m y .  described  caused  with  acknowledged. important f o r that  knew  i t on some I t was  t o me. part  I  o f me.  143  It  was  out.  deeply It was  part  o f me,  T h i s woman a l s o  surgery, P:  changed she  do  p e r c e i v e me  in people's  just  and  they  close  a door  t h a t ' s where  I stay  too;  make  the  the  something see  know t h a t  i t ' s pity  to myself.  as though  I have t o do  I had  they then  in their  put shut  mind.  t o them," and  But  or  know t h a t on me;  I  that's to  I h o n e s t l y get something  you  that  extra  to  up.  she  cannot  about  her  v a l u e as a  have more c h i l d r e n ,  influence of  and  writing,  her  I s h o u l d n ' t have t o p r o v e m y s e l f  T h i s woman's f e e l i n g s that  me.  Since  You  When p e o p l e  silly  social  lacking  whether  "I have t o p r o v e m y s e l f  anyone, e x c e p t  from  loss of  when t h e y  feel,  feeling,  i t was  i n s i d e of  i n some l i t t l e c a t e g o r y o r p l a c e and  the door,  now  the  as  eyes  t o o bad."  a hysterectomy,  my  v a l u e d by o t h e r s :  have more c h i l d r e n ;  "That's  bring i t  fertile;  I c a n ' t have more c h i l d r e n .  something  me  that  or  o t h e r s p e r c e i v e d her.  less  Some p e o p l e  can't  femininity  some e s s e n c e  believed  how  felt  because  I can't quite  It went beyond b e i n g  i t was  fertility  but  more t h a n my  fertility. me;  affected,  large  amounts o f  have  equate  the essence  resulted  influential  economic d i s c o u r s e , or formal  which  person,  speech  of the female  and identity  with  fertility  1978). this  and m o t h e r i n g  Women who a r e r a i s e d  (Ehrenreich  i n an e n v i r o n m e n t  d e s c r i p t i o n o f t h e female  believed  negative  loss of f e r t i l i t y . description, self-image  effects  that  f o rthis  also  had a n e g a t i v e  P:  Half  due t o t h e  e f f e c t s on may  occur  has c h i l d r e n .  on h e r s e x u a l i t y :  I make  t o conceive  feeling.  love,  i s such  just  t h e thought of  a powerful  T h a t was h a l f t h e p l e a s u r e  Not t h a t  knowing t h a t  experience  woman, t h e l o s s o f f e r t i l i t y  effect  t h e t i m e when  love.  o f making  I wanted t o be p r e g n a n t  I could  conceive;  I could  emotion,  but j u s t have a baby,  that  was a g r e a t  part.  This  perspective  o f female s e x u a l i t y i s l i n k e d t o a  particularly about  negative  due t o t h e l o s s o f f e r t i l i t y  able  likely  In a d d i t i o n , f r o m t h i s woman's  i t i s evident  Furthermore,  being  most  where  i s strongly  on s e l f - i m a g e  whether o r n o t a woman a l r e a d y  or  identity  i n and r o l e - m o d e l e d w i l l  significant  & English,  persuasive  historical  medical  f e m a l e s e x u a l i t y w h i c h , among o t h e r  maintained through  that  discourse things,  f e m a l e s e x u a l i t y was m a i n l y  experienced  motherhood:  Even as e a r l y as 1857, key c o n t r i b u t o r s t o a new medical  discourse  sexuality  on f e m a l e s e x u a l i t y i n s i s t e d  was one o f t h e a r e a s  of social  life  that that  145 were r e v e a l e d o n l y t o m e d i c a l they  may be i n a p o s i t i o n  relief.  In t h e e a r l y  c e n t u r y , motherhood construction be  spiritual, (Mort,  identity,  as a v a l i d  site  i t i s also  woman.  of their  fertility  identity  or  lost  the beginning  experiences  effects  a minimal  on s e l f - i m a g e  through  negative  just  due t o n o t h a v i n g  menopause.  e f f e c t on  fertility:  as a p e r s o n ,  n o t t o have k i d s .  not?"  for their  o r t h e enjoyment o f s e x u a l i t y  experienced  I didn't feel  going  began t o  T h o s e women who d i d n o t e q u a t e t h e  s e l f - i m a g e due t o t h e l o s s o f  in  tothe  evident that the loss of  for  P:  i talso  s e n s u a l , and even e r o t i c  d i d not cause n e g a t i v e  with  of the twentieth  n o t o n l y became c e n t r a l  fertility  essence  some mode o f  1987, p. 6 4 ) .  However,  every  i n t h e hope t h a t  t o suggest  years  o f women's  acknowledged  men  a little  grief  c h i l d r e n and  I always debated  whether  "Do I want t o have k i d s o r  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; n o t by me, b u t by some o t h e r r e a s o n .... 11's  clear  have t h e s e x u a l  I don't  r e p r o d u c t i v e o r g a n s anymore, I  still  don't  every  b i t as f e m i n i n e ,  enjoyment.  feel  t o me t h a t a l t h o u g h  any d i f f e r e n t . and I s t i l l  I certainly have  feel  sexual  N e g a t i v e e f f e c t s on s e l f - i m a g e fertility, about had  therefore,  effects  on  The  image.  vaginal  F o r example, enjoyable  g r a f t area this  P:  I loved  What the  penis  fullness; liked and  negative  intercourse  intercourse and b u i l d u p  of scar  entering  tissue.  I just  loved  i t ; there  t h e whole a c t ,  there's  of the She  myself  completely  Even  18 months a f t e r s u r g e r y  woman f e l t  She was b e g i n n i n g  her vagina.  regular  sexual  except  I  that f e e l i n g  i n my body.  relaxed  There  into the  I used t o .  and v a g i n a l pain  sexually  during abnormal and  t o d i s t r u s t h e r body and  She b e l i e v e d  intercourse  f e e l i n g of  was n o t h i n g  t o t h e a c t t h e way  due t o i n c r e a s i n g  dislike  that  f e e l i n g of  a l w a y s some s t i f f n e s s on  given  this  was t h a t  into the vagina;  act;  intercourse,  vagina d i d  due t o s h r i n k i n g  more t h a n a n y t h i n g  I haven't  reconstruction,  e f f e c t s on s e l f -  loss:  as w e l l ;  my p a r t .  had t h e  1 woman's r e c o n s t r u c t e d  more a b o u t  pain  also  negative  the f e e l i n g of ejaculation  inhibited.  fertility  self-image.  described  is  t o cause s i g n i f i c a n t  t o cause s i g n i f i c a n t  allow  beliefs  However, t h e l o s s o f  loss of enjoyable  potential  not  depended on a woman's  t h e female r o l e .  the potential  due t o t h e l o s s o f  during  that  not having  the f i r s t  6 months  after  surgery  vagina,  caused  t h e s h r i n k i n g o f her r e c o n s t r u c t e d  and she blamed  herself  f o r not f i n d i n g  a regular  partner: P:  These f e e l i n g s has  betrayed  vagina deal not  now a r e o f b e t r a y a l ;  me.  I'm t i r e d  has c r e a t e d f o r me;  with  i t every  day.  o f t h e p r o b l e m s my I don't  I'm n o t v e r y o l d .  that  I've been  that  l i k e my v a g i n a in the last  think  i t ' s very  analyze  like  as a normal  young woman;  don't  left  couple  woman.  I feel  o f weeks. When  I was t r y i n g t o  I had was, " I t ' s l e t t i n g  there  I thought  t h a t e v e r y t h i n g was g o i n g  fine;  I could f u n c t i o n normally;  make  love  can't  just  like  anyone e l s e ;  hop i n t o  bed w i t h  "Well,  really  know what's g o i n g  Burger  Will  I need  make  t o be  love  c h a n g e d , and now I can't  i t h u r t s t o o much.  some l u b r i c a n t ;  a student  I  someone; I have t o does t h i s guy  on, and how am  I going t o  i t be t o o p a i n f u l ? "  (1981),  me  For awhile  has been a f f e c t e d .  think,  react?  me down."  had r e a l l y life  I  I t w o r r i e s me; I  is letting  n o t s o ; my  As a  noticed  down, my v a g i n a  that's  I'm  r e a l l y sad  o u t i n some way.  unhealthy.  nothing  new  having t o  any more and I j u s t  i t ; the feeling  normally;  body  And g r e a t s a d n e s s t h a t  f u n c t i o n i n g normally,  somehow  t h a t my  nurse  who had r a d i c a l  surgery  f o rvaginal  achieving negative  enjoyable  cancer,  intercourse  e f f e c t s on  My f i r s t bladder  and i n n e r v a t i o n  not present.  Tears  and t e a r s added  boyfriend to  stayed  My  t o my g e n i t a l s was  why my  What was i n i t f o r him  who was m u t i l a t e d and  Much o f t h a t that  woman were e m e r g i n g . ever  was a mess.  n o t e x p r e s s my f e e l i n g s o f  w i t h me.  myse1f....Fee 1ings  could  with  had s i m i l a r  I began t o q u e s t i o n  have a g i r l f r i e n d  ever  problems  Orgasm was nowhere f o r me.  could  loss.  disfigured?  which  at intercourse  still  this  described  self-image:  attempt leaked  also  was how  I perceived  I was l e s s t h a n  a whole  I wondered whether  anyone  be a t t r a c t e d t o me o n c e t h e y  a b o u t my s u r g e r y  and c a n c e r .  There  knew  seemed t o be s o  many b e a u t i f u l women who were h e a l t h y and available. perfect  and a n g r y  experience In a d d i t i o n the  sexually  First  that  o f women who seemed  I had t o go t h r o u g h  caused  negative  i t made t h e women f e e l to others.  h e r need t o f e e l I thought,  this  1981, pp. 48 & 4 9 ) .  t o the loss of enjoyable  undesirable  described  jealous  (Burger,  loss of the vagina  image b e c a u s e  P:  I felt  intercourse,  e f f e c t s on s e l f -  that  they  F o r example,  sexually  were 1 woman  desirable:  "My God, I have t h i s  reconstructed  vagina, And  what  i n God's name i s he g o i n g  t h a t was t h e o t h e r  think?  In f a c t ,  less.  I haven't  come a c r o s s  b i t weird.  find  out.  I was s u r p r i s e d t h a t  feel  those  feelings  like  time,  just  function  t o know t h a t  normally;  participate,  Once t h a t was o v e r , after  surgery)  one e x p e r i e n c e ;  think, was  just  The also  normally active sexual  sexual  life.  experience I t was  guy g o i n g t o  t o be l i k e wonderful  that, or  experience?  f o r women who d i d n o t have a t o overcome f e e l i n g s o f  and u n d e s i r a b l e .  woman who d i d n o t have a v a g i n a l r e c o n s t r u c t i o n  d e s c r i b e d how t h e l o s s o f h e r v a g i n a  negative  at that  and j u s t  t h a t need.  going  and s u p p o r t i v e p a r t n e r  s e x u a l l y abnormal  like a  I needed  what's t h e n e x t  a particularly  It was more d i f f i c u l t regular  first  I felt  and i s i t r e a l l y  that  feel  a normal,  (her  again  and I d o n ' t  I was d e s i r a b l e , I c o u l d  I could  and l i v e  i n d u l g e and  remember  I felt  was what  nice to  I could  but I just  a woman;  That  was v e r y  of passion,  I had an orgasm t h e n ,  d e s i r a b l e woman.  just  That  again,  that.  anyone who t h i n k s  the least  so good,  couldn't  I was q u i t e s u r p r i s e d about  it's  feeling  being  i s s u e ; what a r e men g o i n g t o  And t o my s u r p r i s e most o f them  have c a r e d  think  to think?"  effects  on s e l f - i m a g e  although  caused  she s t i l l  felt  attractive she  She was m a i n l y  concerned  would be r e j e c t e d by a f u t u r e p a r t n e r  would P:  and f e m i n i n e .  n o t be a b l e t o s a t i s f y How  sexuality,  A vagina  f o r sexual  have a s c o o t e r !  needs:  intercourse; will  another  t h e way  person. I still  to offer,  offer  not  I feel  particularly  feel  than  feel  like  sexually, too.  attraction, differently. woman? out  I feel  Will  he t h i n k  that  i n me?  miss  it.  But I  close to  every  b i t as  aspects,  a new  He'll look  I have  I had  lots  not able t o , or relationship  lose that  sexual  a t me  I'm n o t so much o f a  I'd, somehow, be c h e a t i n g him  o f something or denying interested  now, t o d a y ; i t  But I f e e l  o r somehow h e ' l l  If I  having  the surgery,  interest.  even  a woman; a b s o l u t e l y . I  the sexual  and b e f o r e  had s e x u a l  I don't  of being  a d e q u a t e enough, t o s t a r t  that  vehiclefor  without  right  I certainly  know t h a t , o t h e r lots  life  miss the intimacy  feminine.  your  intercourse.  o f my  be ok, I d o n ' t  certainly  is like  woman and n o t  So i t ' s h o l d i n g me b a c k .  have t o go t h e r e s t  be  or t h a t she  c a n you be a s e x u a l l y i n t e r e s t i n g  have a v a g i n a ?  to  h i s sexual  that  somebody.  Why would he  I t w o u l d n ' t be f a i r .  even  i f we had a d i s c u s s i o n a b o u t  that  i t was f i n e ,  I'd s t i l l  feel  And  i t , and he s a i d t h a t he wasn't  getting  a l l that  he s h o u l d g e t .  T h i s woman was a l s o partners  that  unable t o t e l l  potential  s h e d i d n o t have a v a g i n a b e c a u s e  she f e l t  ashamed: P:  I don't don't in  want them t o t h i n k  them. that  new men b e c a u s e  I just I don't  don't  You c e r t a i n l y  date,  but a f t e r  not  amount o f t i m e when  you'd  intimacy; well, i t ' s  it.  I feel i t ' s  Maybe i t ' s b e i n g ashamed o f my body  Yeah,  I don't  have a v a g i n a i s l i k e Well,  how would  want p e o p l e t o know.  he f e e l ?  T h i s woman f i r s t a potential  revealed  p a r t n e r almost  She f o u n d  He s a i d ,  To n o t  a man n o t h a v i n g a p e n i s . How a w f u l  happen, and t h e n how a w f u l  P:  them on t h e f i r s t  n o t h a v i n g a v a g i n a ; shame l i k e w a n t i n g t o  hide.  surgery.  know  you've g o t t o s i t down and have about  embarrassment. for  know, and d o e s n ' t  t h e r e t o be some s e x u a l  discussion  somebody  I mean how do you t e l l  tell  a certain  spontaneous;  this  don't  reluctant  want t o t e l l  I want t o t e l l  who d o e s n ' t  you?  expect  think  I don't  have a v a g i n a .  somebody t h a t ,  because I  I've been a 1 i t t l e  have a v a g i n a .  meeting  I'm a f r e a k  t o have  t o have e v e r y o n e  know.  t h e loss of her vagina t o  2 years a f t e r  the radical  i t extremely d i f f i c u l t  "Where was y o u r  that  cancer?"  t o do t h i s :  And I s a i d ,  "This so  is a d i f f i c u l t  I ' l ltell  and  then  pull  later."  back.  f o r me  So  I felt  of  almost  totally  empty;  It was  a hollow,  feeling.  I just  couldn't  discuss  any  words t o u s e .  almost  I thought,  c o n v e r s a t i o n ? " And  did  say  totally  was  standing  up  I didn't cry;  i t was  t h e r e was  emotion,  any  even m a t t e r finally She surgery  how  said  realized which  vagina,  he  her  they  how  I would  would  say  t h a t they  third  try.  "Listen, tell  say  b e f o r e we  you,  that  the  last  few  the  vagina,  and  as  I've  days. and  that  of  like I  something. fact.  If  i t didn't  a r e l i e f that I  of  shame: cancer  vagina. and  I  of  that I  T h i s was  s i d e of the here's  the  thought  I decided  it off.  this,  the  bed  what  on  and  I had  cancer,  radiation,  surgery,  they  I had and  I have  cancer  I had  closed off  the  said,  been a v o i d i n g t e l l i n g you  I had  p a r t of the  this,  the  do  I finally  with.  I had  c1osed  I s a t on  do I  c h o s e words t o d e s c r i b e  removed my  about  when  about  i t was  feelings  t o him  "Why  relief;  i t over  detached  i t was  matter  i t was  got  t h a t she  say  and  really  reacted;  i t and  reduced  I couldn't  detached;  to g i v e a speech  start  i t ; I couldn't  have t o have t h i s i t , I was  about,  to sort  chest.  of  to talk  I had  i n s i d e my  think  P:  you  subject  to for of  surgery, my  vagina,  and  so we  Fortunately,  her  Then, due  to t h i s  since  surgery,  the  frustrated  can't  p a r t n e r ' s r e a c t i o n was  first she  without  make l o v e . "  experience realized  a vagina  of  sexual  t h a t she  and  positive. intimacy  felt  sexually  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  of  questions,  very but  really  good a b o u t and  s t r o n g , " and i t was  "Well,  no  good, now  felt  "How  without  is  being  o t h e r s were negative  important  effects  on  feel  about  he  social  self-image.  that positive  necessary  to s t a r t  feeling  I went t o my  surgery,  I was  well  and  they  were d e l i g h t e d t h a t  was  g e t t i n g about.  r e c e i v e d by  The  love; I  frustration  with  surgery's  with  (1981) a l s o others  herself  the  was  were  again:  f o u r months people  I looked  evening  want  intercourse.  Burger  party,  bed."  I want i t  The  good a b o u t  first  into  experiences  experiences  said,  I wouldn't  though.  i t now.  i t now?";  finally  fine;  i n r e v e r s i n g the  described  When  and  couple  must have been  were making  a vagina  a  "You  a b l e t o have g e n i t a l  women's s e x u a l  me  i s done, g e t  It was  miss  asked  then  shame when we  I definitely  not  you  that that  back.  The  do  more f r u s t r a t e d .  c a r r y on  He  d i d say,  b i g d e a l , and  I didn't feel  to  he  it.  after I knew,  so w e l l  fun.  and  I danced  and  laughed.  wore p a n t s how good  I looked  lovely  with  new c l o t h e s ; I  t o h i d e my c a t h e t e r and b a g .  i t was t o be h e l d and t o u c h e d ,  r e a w a k e n i n g o f my s e x u a l starting  with  t o l i k e myself  self again  and a  was b e g i n n i n g .  (Burger,  Burger  (1981) s t a t e d t h a t even n e g a t i v e  others  c o u l d be h e l p f u l ,  support  understand  these  I was  and began t o f e e l  better  emotional  I remember  1981, p. 4 8 ) .  but only  b e c a u s e s h e had  and c o u n s e l l i n g w h i c h negative  experiences  experiences  helped  her t o  and e x p r e s s h e r  f e e 1i ngs: I felt  v u l n e r a b l e and u n s u r e .  serious of  relationship.  men f o r e x p e r i e n c e  getting  rejected.  support  from  I wanted t o d a t e but a l s o  With  try.  the psychiatrist  Some men d a t e d  a variety  p r o t e c t myself  and f r i e n d s ,  o f humor,  me o u t o f c u r i o s i t y  I had t o d e c i d e who t o t e l l  not  Some men t o o k  called  back.  several tried  A psychology  months.  together  I was w i l l i n g  I had c a n c e r ; to t e l l .  from  t h e encouragement and  wS'th t h e r e t u r n o f my s e n s e to  I d i d n ' t want a  and who  me o u t o n c e and n e v e r student  He was e x t r e m e l y  t o hide h i s negative  because  and I d a t e d f o r ambivalent but  feelings.  He c o u l d  w i t h me and be u n d e r s t a n d i n g ,  b u t he was  turned  This process  o f f t o me p h y s i c a l l y .  talk  completely was v e r y  important.  I learned that  rejection,  and  d e s p i t e my  illness  feeling relate  surgery's  emotional with  had  reconstruction,  interested  support  effects  a partial  and  on  in  me  I started  1981,  I could  p.  50).  c o u n s e l l i n g , negative  likely  increase  self-image.  vaginectomy felt  needs and  As  about m y s e l f ,  (Burger,  initially  sexual  were  surgery.  others w i l l  negative  1 woman, who  partner's  or  b e t t e r t o men  experiences  tolerate  t h a t some men  more c o m f o r t a b l e  Without  I could  unable  considered  the  For  but  example,  d i d not  to f u l f i l l  need  her  l e a v i n g her  partner: P:  ( N i n e months a f t e r kissing  or  before. he  I feel  just  Fifteen during  partner's  effects P:  not  surgery  f o r her on  That's  husband  surgery  i s not  like  like  is suffering;  I t h i n k f o r the  man  she  felt  less  pain  more s e x u a l l y d e s i r a b l e . feeling and  ashamed o f  remained  satisfaction.  body  but  I feel  enough.  described  sexual  Sometimes  everything  anything,  i n t e r c o u r s e and  from the  praise  say  but  t h a t my  months a f t e r  However, she body  hugging,  doesn't  it's  surgery)  concerned  Her  i n c r e a s e d the  s c a r s on about  husband's  surgery's  her her  lack of  negative  self-image: why  I feel  happier  now.  Before  I think  that  maybe my husband little  hope.  husband. for  I don't  never  either. because  leave,  Sometimes  I don't  me.  He's  will  I feel  know why.  my s c a r ;  looks  ugly.  like  said,  before,  that  I enjoyed that  about  change  Leg caused  negative  skin  Maybe b e f o r e .  I still  I think  am.  He used  from near  Once he  my husband  because still  he would  l i k e me as much.  i t . We c a n ' t  required  I  look  He l i k e s me, b u t t h e s c a r s and  he d o e s n ' t  effects  when  i t . I don't  Maybe i f he had a c h a n c e  and a b d o m i n a l  reconstruction donor  s o much.  i t . My husband  beautiful.  believe  I was t h e s e x i e s t woman  a n o t h e r woman.  talk  I can't  And t h e s w e l l i n g  Not now.  thinks  i t  Before, I  I sometimes s e e i t i n t h e m i r r o r  t h a t my husband  everything;  sorry  on, but I don't  i t ' s t o o long.  guess  for  he f e e l s  I'm e m b a r r a s s e d .  a sexy woman.  d e s i r e s me.  I guess  want t o show my body.  I t a k e a shower, and I c a n ' t feel  shame w i t h my  He d o e s n ' t want t o s e e  He wants t h e l i g h t s  showed my body, b u t now hide  I have a  want him t o s e e t h e s w e l l i n g .  s e e n my s c a r .  I don't  b u t now  change  never  We  i t now.  tells  don't  Nobody c a n  me I'm  t o , b u t i t ' s gone now.  scars  from t h e s u r g e r y  on s e l f - i m a g e . t h e removal  the groin  also  The v a g i n a l  of a large piece of  t o t h e knee.  The women  felt  uncomfortable  P:  I l i k e wearing looked that  at.  s h o r t s , and  There are  I've  you've had  defined  never an  shape.  was  told  but  it still  seen  doesn't  scar doesn't  like  i t now.  more s i n c e this  and  started  It's  "Oh,  been a l m o s t  even  to  of white.  t o me  now  t o have t h i s  looked  really  bad  before.  emotional  accepting  to surgery  h e a l t h and  sexual  I  disappear,  helped  to  body a l o t  him.  scar  I  met  I even  to  girlfirend your  I'm  s c a r on scar.  changes  scars:  started  I met  My  and  natural  f u n c t i o n due  this  a  good.  Even b e f o r e  look, t h e r e ' s  body w i t h  of  I've  last.  now,  can't  like their  I showed my  2 years  beach  such  others  l i k e my  a t my  process  You  i t has  with  looking  The and  It's sort  even s a y ,  the  look v e r y  even more s i n c e  went t o a nude beach and  be  good.  l o o k t h a t bad.  f e l l o w , but  didn't  very  I t a l k e d t o you  everybody.  i t before.  doesn't  look  scars:  i s something  experiences  I've  on  that everything w i l l  some women g r a d u a l l y a c c e p t My  this  It s t i l l  in a year  their  I d o n ' t want t o  a c c i d e n t because  However, p o s i t i v e  P:  disliked  l o t s of people  have b i g s c a r s , but  different; say  i n p u b l i c and  scar."  used it.  to It seems  I thought  it  i n body s t r u c t u r e  i s known t o be satisfaction:  necessary  for  Women who d e v e l o p mastectomy  surgery  body  image p r o b l e m s  commonly  t h e m s e l v e s whenever t h e y take  a shower.  between body  101).  collect  woman i n t h e s t u d y  vagina  bud and a bag t o  i n ways w h i c h were s i m i l a r  and body s c a r s .  negative  She d e s c r i b e d  Well,  I feel  like  a freak;  effects like  on  This  that  a negative  that's  I'm n o t c o m p l e t e ; there.  i t ' s there.  that  the  bother  family  felt  urostomy;  experience  how I f e e l  I'm n o t w h o l e . I never  seem t o  i t ; those like  f o r me.  n o t my son.  My d a u g h t e r  T h a t was ok.  hoses,  a freak.  t h e bag and t h e a c c i d e n t s .  sorry  now,  How c a n I go swimming?  e q u i p m e n t , and you f e e l with  others  increased the  new body and what t o do w i t h  and  woman was  self-image:  a freak;  B e c a u s e o f t h e urostomy forget  this  and r e l u c t a n t t o t e l l  h e r young g r a n d d a u g h t e r w h i c h  surgery's  e f f e c t s on  to the loss of the  After 4 years,  ashamed o f h e r body  (Maguire,  a l s o had h e r b l a d d e r  u r i n e on h e r abdomen had n e g a t i v e  about t h e urostomy.  P:  correlation  problems  The p r e s e n c e o f an urostomy  self-image  bathe, or  image p r o b l e m s and t h e d e v e l o p m e n t o f  1985,  p.  looking at  undress,  i s a strong  d i s o r d e r s and s e x u a l  removed.  with  dress,  affective  One  still  There  avoid  after  And  My  has s e e n t h e  The o n l y  thing  was t h e l i t t l e  one, t h e 2 y e a r o l d ; she c a u g h t  one  time  and  I was a l r e a d y e m p t y i n g  at  i n t h e bathroom.  me, and now e v e r y t i m e  wants t o go w i t h me. and  she's  her; She  She knows  on h e r f a c e ,  I felt  be t h e r e .  Now she w a t c h e s me  effects stated  radical  on s e l f - i m a g e . that  not having  s i t down, It h o r r i f i e d  bag; i t was a v e r y were  I didn't  just  want h e r  l i k e a hawk and  I go.  However, n o t a l l c h a n g e s due t o t h i s  it.  her eyes  uncomfortable;  goes w i t h me whenever  function  I don't  t h e look on h e r f a c e .  l o o k e d up a t me, and a t t h a t  bulging.  t h e door,  I go t o t h e t o i l e t s h e  t o o young t o u n d e r s t a n d  feeling  close  t h e b a g , and she l o o k e d  you s h o u l d have seen  strange  to  I didn't  me  i n body  s t r u c t u r e and  s u r g e r y had n e g a t i v e  F o r example, t h i s a v a g i n a had l i t t l e  woman  also  effect  on h e r  self-image: P:  No, n o t t h a t would  important  be i f I'd had a d i f f e r e n t  my a g e , b u t n o t what sexy, but  (removal  oversexed  I had.  husband;  It  a woman o f  I f I would have been a  woman; t h a t would have b o t h e r e d  me,  I n e v e r was.  T h i s woman's comment, t h a t therefore, about  of the vagina).  an " o v e r s e x e d "  female  sexuality  a " s e x y " woman was,  woman, i s an example o f b e l i e f s  w h i c h have h i s t o r i c a l l y r e p r e s s e d  160 f e m a l e s e x u a l e x p e r i e n c e s and n e e d s : The m a j o r i t y o f women s h o u l d n o t be t r o u b l e d sexual  f e e l i n g s o f any k i n d .  however,  i s an i n s t i n c t u a l  attribute  of masculinity;  Male s e x u a l i t y ,  f o r c e ; an e s s e n t i a l a power and a p r i v i l e g e  w h i c h g i v e s man h i s d i g n i t y ; h i s c h a r a c t e r and  ruler  (Mort,  1987, p.  In t h e 19th c e n t u r y , physicians feelings and  were a b n o r m a l .  widely  maintained  that  Furthermore,  female  which  since  sexual written  enforcement o f t h e  allowed  p o l i c e t o j a i l and  " r e - e d u c a t e " p r o s t i t u t e s who were v i e w e d abnormal.  influential  T h e s e p u b l i c a t i o n s were  distributed to justify  Contagious Disease Acts  as head  68).  p u b l i c a t i o n s by  and p o l i t i c i a n s  with  sexual  as s e x u a l l y  f e e l i n g s i n males  were v i e w e d  as n o r m a l , t h e men who used  prostitutes  d i d not r e q u i r e  re-educating  the services of and were n o t  jai1ed. These r e p r e s s i v e  19th c e n t u r y  beliefs  still  f e m a l e s e x u a l i t y and c a u s e some women t o f e e l sexual  needs a r e abnormal  recognized feel and  that  that  health  (Stevenson, Changes  that  to discuss  surgery  their  I t has been  p r o f e s s i o n a l s must h e l p  i t i s acceptable  needs a f t e r r a d i c a l  and immoral.  inhibit  sexual  women  feelings  f o rgynecological  cancer  1986). i n body s t r u c t u r e and f u n c t i o n due t o t h i s  radical  surgery  self-image. vaginal P:  also  caused  d i s c h a r g e had a p o s i t i v e  To t e l l  this  you t h e t r u t h , a relief,  infected  this  wearing  heavy  these  didn't  this  positive  unusual  Even  though  back t o n o r m a l , a t l e a s t I heavy pads and c o n s t a n t l y  like  effects  this  constant  reminder  h e r from  woman, h a v i n g  on s e l f - i m a g e were due t o  t h a t one woman had been  small  enjoying radical  intercourse. surgery  r e c o n s t r u c t i o n caused  image.  She d e s c r i b e d t h e s e  able t o enjoy confidence  Therefore, f o r  which r e q u i r e d  positive  positive  effects  effects  i n t e r c o u r s e and a new f e e l i n g  s i n c e she now had a n o r m a l - s i z e d  Before  i t was d i f f e r e n t  vagina  and i t was a l w a y s p a i n f u l .  because  At l e a s t  on s e l f -  as b e i n g of s e l f vagina:  i t was a s m a l l I'm r e a l l y  I had t h e r e c o n s t r u c t i o n done b e c a u s e bigger.  born  v a g i n a w h i c h had a l w a y s  vaginal  P:  s o I was  pads a l l t h e t i m e .  drip,  circumstance  a congenitally  prevented  infection  April to  s o m e t h i n g was wrong.  Other  with  awful  I got r i d o f  I had gone f r o m  have t o wear t h e s e  have t h i s  d i d the surgery i t  because a t l e a s t  terrible  I wasn't p h y s i c a l l y  effect:  when t h e y  portion.  December w i t h  that  e f f e c t s on  F o r example, t h e c e s s a t i o n o f a c h r o n i c  was a l m o s t  the  a few p o s i t i v e  I have a good s i z e  glad  i t ' s much of a vagina,  and  I'm e n j o y i n g  think  sex b e t t e r t h a n  o f s e x ; I knew t h e r e was g o i n g t o  p a i n , and I d i d n ' t r e a l l y  it's  completely  I don't  Before  different;  have p a i n , t h e n  confident  because  I wasn't  enjoy  it.  I can enjoy  i t ' s great.  reconstructed skin  vagina  graft  the  i t , and when self-  I am a b l e t o have normal s e x .  complete.  with  changes.  to her experience  And now  I'm more  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  the  I  i t changed me q u i t e a b i t b e c a u s e b e f o r e I  was a l w a y s a f r a i d be  I could before.  a mirror  Her a b i l i t y  as a m i d w i f e .  reconstructed vagina  i n order  helped  examined h e r t o observe  t o do t h i s  was due  These o b s e r v a t i o n s o f her t o accept  h e r new  vag i na: P:  I look  t o s e e what t h e c o l o r  mirror  as f a r as I c a n s e e i t .  changing,  but i t doesn't  t o me y e t , of  together;  normal.  It's light  pink.  a  like  a normal  vagina  It's kind  i t doesn't  The s i d e s and b o t t o m a r e s o f t ,  I won't even know  still  with  I t seems t o be  lots of folds;  t h o u g h , and t h e d o c t o r s years,  like,  b u t who knows, maybe i t w i l l .  squished  look  look  looks  told  I have a d i f f e r e n t  kind of purple; I think  I had t h e mold  me t h a t , a f t e r  bluish;  a few vagina.  not r e a l l y  that  i t i s s h o r t e r , t o o , than  when  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 e x a m i n i n g h e r  reconstructed accepting  vagina  and l i k i n g  I used  normal."  change  tube  with  t o look in place  t o see t h a t  the mirror,  I could  were d e v e l o p i n g  effects  which caused  "about  I used a with  the glass  as i n a normal  (Burger,  1981, p.  48).  i n body s t r u c t u r e and  several s i g n i f i c a n t  negative  on s e l f - i m a g e were t h e l o s s o f f e r t i l i t y , t h e  loss of the vagina, body  I looked  and was  see t h e changes i n  Ridges,  In summary, t h e c h a n g e s function  a t my g e n i t a l s  into the vagina;  vaginal walls.  vagina,  part of gradually  i n body s t r u c t u r e :  t o look  reassured  Along  flashlight test  this  a hand m i r r o r  continuously  the  was an i m p o r t a n t  the loss of enjoyable  s c a r s , and a u r o s t o m y .  self-image identity, sexually  due t o t h e s e  body  abnormal  positive  e f f e c t s on  changes were a l o s s o f  a loss of s e x u a l i t y ,  feelings  of being  and u n d e s i r a b l e , shame and d i s l i k e f o r  o n e ' s body, and i s o l a t i o n The  The n e g a t i v e  intercourse,  from  others.  women d e s c r i b e d t h e i m p o r t a n c e o f h a v i n g experiences  surgery's  negative  emotional  support  especially  with  effects  others  i n order  on s e l f - i m a g e .  and c o u n s e l l i n g were  when t h e s e  to reverse the Professional  necessary,  women had n e g a t i v e  experiences  with  others. The  contains  l a s t sub-heading the  self-worth cancer.  in the  t h i r d major  women's d e s c r i p t i o n s o f t h e i r  after  radical  surgery  category  perception  for gynecological  165 3.  Perception of Self-Worth The p e r c e p t i o n o f s e l f - w o r t h  life-span  and c a n be enhanced o r i n h i b i t e d by  interactions physical, 1985).  with  others  and e m o t i o n a l  A significant  women's p e r c e p t i o n surviving  radical  women d e s c r i b e d surviving surgery, felt this  finding  feeling  (Sanford  in this  of self-worth  study  proud  & Donovan, i s that the  was enhanced  f o r gynecological  recovering  and t o l e r a t i n g  and s t r o n g  due t o  cancer.  The  due t o  p h y s i c a l l y from t h e  severe  pain.  The women  also  growth due t o  surgery. example,  strength  which  Just  about  surgery  and 6  t o remove a b e n i g n  ovarian  had a t f i r s t  suspected  of the cancer: the pain  p a r t o f i t made me  b e c a u s e no m a t t e r  above  strong;  f e e l i n g s of pride  her r a d i c a l  s h e and t h e p h y s i c i a n s  d e a l i n g with  rise  all  after  f u r t h e r surgery  of myself  that  1 woman d e s c r i b e d  1 year  t o be a s p r e a d P:  functioning  surgery  cancer,  months a f t e r cyst  and by an i n d i v i d u a l ' s m e n t a l ,  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  For and  varies during the  it.  i s that  have been.  that  I was  I d i d n ' t make a f u s s  i t , even t h o u g h t h e r e I should  how bad i t was, I c o u l d  I was p r o u d o f m y s e l f ;  I was c o u r a g e o u s ;  proud  really  was no o t h e r  I guess t h e best  i t ' s improved my s e l f - i m a g e .  way  thing of I'm much  happier  with  person;  I had  had  myself.  I just  t o push m y s e l f ;  Just having  through  experience,  lived  the  I've  And,  after  some l e v e l  I realized  that  never  had  back;  I would  gone beyond accepted  able  a  be.  self-worth  grieving vaginal  fear of  her  described  during  second  having  that  of  level. the  from that for  her  perception due  to  disappointment  reconstruction.  interview,  s i x months  increasing pain  from  she  6 months,  inhibited  intense  had  situation.  surgery  surgery,  I  I think  assume  next  time;  I had  and  self-worth  the  before.  i t at the  mistakenly of  felt  dying,  good o u t  radical  l o s s e s and  functioning after  During  deal  benign c y s t , I  I realized  from r a d i c a l  Yet, the  with  became s i g n i f i c a n t l y  f o r her  or  i t d i d come  a much d e e p e r  l o t of  recovered  after  the  I hadn't  to deal  phase of  cancer.  2 years  of  or whether  woman's enhanced p e r c e p t i o n  almost  she  again,  p r o f e s s i o n a l s may  gynecological  have t o do,  m a t t e r what happened, whether I  s o m e t h i n g on  emotionally  done  no  t h a t may the  more and  peace t h a t  be  I have r e a l i z e d Health  removal  gone  of  cancer  however h a r d  the  ever  I  self-  more e f f i c i e n t .  felt  of  more  another  qualities.  sufficient,  with.  had  t o become  push my  t o become b e t t e r , s t r o n g e r ,  more t h a n most p e o p l e w i l l  this  had  her  later,  about  167  reconstructed  vagina  intercourse.  She d i d n o t have a r e g u l a r  found with  i t was  impossible  a full-time  experiencing Her  which prevented  education  an i n c r e a s e  f o r t h e major  p a r t n e r , had  t o become i n d e p e n d e n t o r cope program, and was now  i n emotional  d e s c r i p t i o n s show t h a t  grieve  enjoyable  vulnerability.  s h e was b e g i n n i n g  l o s s e s caused  by t h i s  to f u l l y radical  surgery. All  of these  self-worth,  and h e r a b i l i t y  psychological R:  factors inhibited  her p e r c e p t i o n o f  f o r s e l f - d e t e r m i n a t i o n and  growth was r e d u c e d  Do you g i v e y o u r s e l f c r e d i t  at t h i s  time:  f o r what you went  through? P:  Yeah, t h o u g h t h a t ' s b e i n g I'm s a y i n g , Or,  "Well,  now?  "Well,  normal  apart,  can't  like  w h i c h means have t o d e a l  on  life;  The  go o u t and f u n c t i o n  a normal  still my  i t b u t where does  person because everytime  function  that  after-effects  right  so what, anyone c o u l d  I've done  I still  undermined  person;  now.  do  i t have me like  I think  a  I do t r y t o I start  falling  I'm n o t a normal  person."  with  of the surgery  the e f f e c t s  I'm n o t as s t r o n g of the surgery  I've overcome  I  as I t h i n k  and h a v i n g  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 . when  i t . "  I am.  to Just  i t ; I've d e a l t w i t h i t ;  it  just  that  a l l s t a r t s to the surface  I haven't  I haven't dog dead  body  like  I haven't  and I h a v e n ' t  cried.  that's  just  a t t h e time,  coming;  was d e a d . "  I don't  I could  and t h e n  I don't t h i n k  major  feel  impairment suicide cancer  often  and g r e a t e r  diagnosis  in  cause a major bereavement  experience  intense  point and I l e t  i t  i t again.  But  c a n c e r who d e v e l o p a functional  Furthermore,  status  the risk of  6 months t o 5 y e a r s  that  like  since.  have g r e a t e r pain.  I cried  c r y i n g because t h e  at that  after a  1988).  barriers to grieving a loss  depression,  and a l s o t h a t  appears t o occur surgery  frequently  disturbance i n women who  (American P s y c h i a t r i c  1980).  A s e c o n d woman a l s o d e s c r i b e d self-worth  My  i s something  repressed  women w i t h  gynecological  Association,  "This  ( S a u n d e r s and V a l e n t e ,  P s y c h i a t r i s t s maintain can  I just  seems t o i n c r e a s e  sobbed;  coming o u t ,  I've c r i e d  i s known t h a t  depression  grieved.  remember c r y i n g  I'm n o t j u s t  s o m e t h i n g was o b v i o u s l y  It  really  i n my arms, and I j u s t  I thought  come o u t ,  see  a c o u p l e months ago, and I h e l d h i s  that.  dog  and I  d e a l t with i t .  cried,  was k i l l e d  again,  feeling  12 months a f t e r t h e r a d i c a l  fear that  t h e c a n c e r would  undermined  surgery.  return  Her  and h e r  suppression P:  I had not it  of g r i e f  were m a j o r  a feeling  that  t o o many p e o p l e fine.  others  I felt  feeling  fine,  after  awhile,  daily  life,  I went t h r o u g h go  through,  like  have n o t .  I had  After  I was  really  "What a b o u t my  better?  Maybe  the  are not  future.  wrong? to  Why  a goal  the other I don't  feel  fear  cancer  I'm  of  that  the  deal  with  happens  "Well,  something  different  you  than  Then I any  but  I can't  my plan for  really  t h e work o f g e t t i n g  here  t o enjoy  dying?  My  went t h r o u g h  The be  it?  doctor a  When said  l o t , " but of  only thing that  able to forget  is there,  and  I t ' s when  I ' l l have t o  anything  f e a r a l w a y s comes back when  It's scarey  breaking  but  normal  they  i t fine,  away.  life.  I have t h i s  was  wish t h a t t h a t f e e l i n g  cancer  body; t h e  hurts.  be  I ' l l never  i t a l l my  anyone t h a t  I  myself,  i s something  t o be  would go  s c a r e of  Are  through  I just  that  i n my  when  It's like  not  going  it.  concerned  surgery,  nerves?  I go  of  things that  happy w i t h  i f there  I may  I'm  day,  I came o u t  came back t o t h e  better."  should  I think that  and  achieved  I came t h r o u g h  What  when  a thing that  I d i d n ' t t h i n k about t h a t .  thought,  nerves  the  everything  and  factors:  and  feeling your  of  I can't  tell  fear.  It's  leg; there  i s no  choice;  cancer  i s t h e r e and comes o u t whenever i t  wants.  I believe there  nothing  I c a n do a b o u t i t .  i s a program, and t h e r e i s  T h i s woman needed t o e x p l o r e and e x p r e s s feelings  o f f e a r which  experience with diagnosed fear  with  which  could  a friend cancer.  inhibited  would  t o her t r a u m a t i c  who d i e d 1 y e a r  after  T h i s was n e c e s s a r y  being  t o reduce her  perception of self-worth.  not r e s o l v e t h i s  develop  related  intense  fear,  she would  If she  n o t be a b l e t o  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 b u t  continue to feel  p a s s i v e and f a t a l i s t i c  about her  1 ife.  Some h e a l t h p r o f e s s i o n a l s source  of d i s t r e s s i n g  concluded recover  that  from  feelings  individuals  having  fail  cancer  to explore the  about  cancer  b u t have  who do n o t p s y c h o l o g i c a l l y are simply  seeking  attention: Some c a n c e r  patients fail  psychologically disease  after  least,  this  cannot  believe  and  have  concern  and s o c i a l l y  treatment.  that  they  through  "being  despite being  behavior.  Patients  are free of their  they  cancer  g e t more a t t e n t i o n and  i l l " , r a t h e r than  1985, p. 1 0 1 ) .  free of  In a p r o p o r t i o n , a t  i s due t o i l l n e s s  learned that  (Maguire,  t o recover  "well"  This due  particular  t o having  judgemental  cancer  attitude  explanation  of emotional  distress  i s an example o f a common which  labels  emotionally  distressed  patients  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  attitude  does n o t t a k e  the healthy  integration usually  o f a major  takes  into  account  loss  i n t o an i n d i v i d u a l ' s  from 2 t o 4 y e a r s  Furthermore, the g r i e v i n g months a f t e r initial  reactions  o f shock  (Whitfield,  process  a sudden m a j o r  that  loss  usually  and d e n i a l .  an a p p r o x i m a t e c o u r s e ,  shock,  denial,  pain  and d e s p a i r ,  negative loss  note,  and a n g e r ,  begins  Acute  several  grief  beginning  progressing  and e n d i n g on e i t h e r  with  through  a positive  d e p e n d i n g on t h e c o n d i t i o n s  and t h e p e r s o n ' s o p p o r t u n i t y  1987).  due t o t h e common  tends t o follow anxiety,  life  or a  around t h e  to grieve  i t (Bowlby,  1980). Radical several  surgery  sudden m a j o r  fertility  and l o s s e s  f o r gynecological losses.  enjoyment,  since  major  at d i f f e r e n t times a f t e r  t h e women were c o n f r o n t e d  grieving  p r o c e s s was n o t p r e d i c t a b l e ,  appeared  t o be most  surgery.  sexual  and t h e a b l i l i t y  In a d d i t i o n , losses  caused  T h e s e were t h e l o s s o f  i n sexual  image, body-image, s e c u r i t y ,  cancer  i n t e n s e between  self-  t o work. by t h e s e  the surgery, the although i t  1 and 2 y e a r s  after  Although integrate the  each  behaviors  emotional  described  P:  l o s s and r e g a i n  how shock  framework consists  spinning  sleep  I was moving to live  (1979) d e v e l o p e d  1 woman affected  f o r months and  at night  b e c a u s e my mind  keep a s t e a d y  so f a s t with;  thought  i n s i d e , and t h a t  I just  couldn't  despair.  o f shock,  individual's  also  A  list  anxiety,  stage  loss.  turn  life.  stage of g r i e v i n g  and d e n i a l  which  progresses,  s t a g e o f p a i n and  i s labeled the favorable or  The t h r e e  several  explains  This  i n t e g r a t i o n o f t h e l o s s and g r i e f  can l a s t  stages  the f i r s t  months, t o t h e s e c o n d  A third  unfavorable  a framework w h i c h  o f g r i e v i n g f o r a major  shows t h a t  several  Simos'  t h e women's  off.  process  process  created  a f t e r surgery  I couldn't  so d i f f i c u l t  Simos  over  off.  my mind.  it  well-being,  inhibited  F o r example,  stop  I couldn't  never shut  was  which  and a n x i e t y  My mind w o u l d n ' t  in  psychological  functioning:  months.  the  turmoil  of self-worth.  mental  f o r t h e women t o  and f e e l i n g s o f g r i e v i n g a l s o  and m e n t a l  perception  her  g r i e v i n g was n e c e s s a r y  stages  into the  of the grieving  months and o v e r l a p  of the  occurs. of acute g r i e f  (1979) s e c o n d  behaviors  and f e e l i n g s i n  stage of g r i e v i n g are included  here  because these described for  specific  behaviors  and f e e l i n g s  by t h e women who e x p e r i e n c e d  gynecological  were o f t e n  radical  surgery  cancer:  1.  P h y s i c a l and p s y c h o l o g i c a l p a i n and d i s t r e s s .  2.  Contradictory pulls,  3.  Searching  behavior  - preoccupation - a compulsion  with  the loss.  to retrieve  the loss.  and r e s t l e s s n e s s .  o f w a i t i n g f o r s o m e t h i n g t o happen.  - a feeling  of being  - a feeling  o f n o t knowing what t o do.  -  to initiate  inability  lost.  any a c t i v i t y .  - a feeling  t h a t time  - a feeling  of d i s o r g a n i z a t i o n .  - a feeling  that  life  i s suspended.  can't  - c o n f u s i o n and f e e l i n g s - fear  t h a t a l l t h e above  4.  C r y i n g , anger, g u i l t ,  5.  Return  to behaviors  p r e v i o u s major 6.  impulses.  composed o f :  - a i m l e s s wandering - a sense  e m o t i o n s , and  be w o r t h w h i l e  of unreality. i n d i c a t e mental  The behaviors  from  illness.  shame.  and f e e l i n g s  connected  with a  loss.  H e l p l e s s n e s s and d e p r e s s i o n , (adapted  again.  Simos,  hopelessness  1979).  women's d e s c r i p t i o n s showed t h a t and f e e l i n g s  inhibited  these  the perception of s e l f -  worth and  and d e c r e a s e d  psychological  P:  I cried  their  a b i l i t y for self-determination  growth:  and c r i e d ,  and I had a h e a d a c h e so bad I  wanted t o p u l l  my h a i r  it.  I felt  Sometimes  thought,  "Why  am  o r h i t my head t o g e t r i d o f like  I was t u r n i n g  I like this?"  Every  crazy.  time  I  they  made me have hope and t h e n t h e hope was gone. P:  C r y an a w f u l  g o t c u t down w i t h  and  I t was a b o u t  my h e a l t h .  feel  as i f I c o u l d  gets  mixed  This  perception  Do you f e e l  P:  Yeah, a l o t more t h a n cancer.  ready  another major  unrelated  l o s s e s , d e s c r i b e d her  of self-worth  even 4  years  t o die?  You d o n ' t  i n my c a s e ,  since the  my  favorite  niece  her every  t o be a h e a d ,  that  second  died.  f o r being I dead  alive.  I'm s o much  and l e t h e r l i v e ?  I  day, and s h e  oh God, and I had t o watch t h a t .  guilty aren't  l i v i n g ; ever  know what's g o i n g  t o go t o v i s i t  suffered,  Why  Everything  surgery:  R:  felt  I do  I used t o c r y an a w f u l l o t  woman, who e x p e r i e n c e d  radical  used  things  my b i g s u r g e r y .  inhibited  and  that.  e x p l o d e some t i m e s .  up i n t h e r e .  Both  an a x e ; my j o b  losing  in addition to the surgery's  greatly after  what you do.  happened t o me;  after  loss,  l o t , that's  And I older.  Therefore, experienced surviving  enhanced  some women  initially  p e r c e p t i o n o f s e l f - w o r t h due t o  the cancer  experienced several  although  and r a d i c a l  an i n h i b i t e d  months a f t e r  surgery,  they  also  perception of self-worth  surgery  due t o t h e g r i e v i n g  process. The  length o f time  of the three  stages  depends on t h e m a g n i t u d e o f t h e l o s s , opportunity access 1987). that  t o emotional  P:  and c o n c u r r e n t  l o s s e s , and  f o r grief-work  (Whitfield,  f a m i l y members, f r i e n d s , d i d not p r o v i d e  the grieving I'm v e r y my  o r even p r o f e s s i o n a l  adequate emotional  and I have a p r o b l e m  even t o c l o s e p e o p l e .  because  I'm q u i t e s h y , and I j u s t  express  my f e e l i n g s  they  I think  support  my  don't  know how t o  people  family these  l e s s o f me.  expressing  I think i t ' s  about feelings  They m i g h t t h i n k I  i t a l l up, and I was j u s t  make them f e e l I used  o r how t o t e l l  i f I told  would t h i n k  was making  evident  process:  emotional,  feelings  them.  P:  support  a b i l i t y and  From t h e women's d e s c r i p t i o n s , i t was  counsellers for  t o g r i e v e , past  of grieving  saying  i t to  s o r r y f o r me.  t o be f u r i o u s b e c a u s e , whenever say, "Well,  I did talk  t o c o u n s e l l o r s , they  would  you a l r e a d y  have two c h i l d r e n . "  As f a r as I'm c o n c e r n e d ,  even  if The  I never  had more c h i l d r e n ; t h a t ' s n o t t h e p o i n t .  point i s that  taken  f r o m me.  I can't;  that d e c i s i o n has been  My f a m i l y d i d n ' t s e e why i t w a s s o  u p s e t t i n g t o me t h a t  I had a hysterectomy.  b e c a u s e i t i s a b i g d e a l t o me, important.  But,  i t should  be  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 because so often t h e r e a c t i o n I get  i s , "Oh, s h e ' s h a d c a n c e r ,  she's a l i t t l e emotional."  so don't mind h e r ,  I t h i n k no one  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 emotionally?" having  doing  o r "How a r e y o u t r y i n g t o d e a l  a vaginal  hysterectomy,  ever  r e c o n s t r u c t i o n , and having  and having  cancer?"  with a  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 were t h e f i r s t person volunteer  w h o a p p r o a c h e d me o n a  basis.  It i s known 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 when a m a j o r l o s s i s f a v o r a b l y new i d e n t i t y i s r e o r g a n i z e d loss (Simos, 1979). determination there  with r e s t i t u t i o n f o r the  Therefore,  the ability for self-  and p s y c h o l o g i c a l growth increases  i s a favorable  process  when  integration of the loss.  F o r e x a m p l e , o n e woman d e s c r i b e d gradual  i n t e g r a t e d and a  part of this  of integrating the loss of her f e r t i l i t y  and c r e a t i n g a new, and a c c e p t a b l e , not P:  i n c l u d e the a b i l i t y  identity  which did  to have c h i l d r e n :  That f e e l i n g has passed to some e x t e n t . there a l i t t l e b i t ; the that  I d o n ' t think  loss of f e r t i l i t y loss of  better  identity  about me.  person;  I'm  still  completely.  I've  that  I'm  still  dealt  I don't  so much anymore;  I feel  It's  I  still  with  feel  feel a whole  a complete p e r s o n ; I j u s t  don't  have that part of me anymore, but there are s i d e s to me.  I haven't explored those other parts  which i s maybe why I f e e l don't feel Yet,  the  a l i t t l e u n c e r t a i n , but I  l o s s as much.  at the same time that t h i s woman was  integrating  the  loss of her f e r t i l i t y ,  the acute stage of g r i e v i n g f o r the intercourse.  she was a l s o in  loss of  enjoyable  Her r e c o n s t r u c t e d vagina s t i l l  severe pain during i n t e r c o u r s e even 18 months surgery.  yet,  caused after  She was p r e s e n t l y c o n f r o n t i n g a major  loss  her sexual s e l f - i m a g e , s i n c e she now r e a l i z e d that  in  the  r e c o n s t r u c t e d vagina was not meeting her e x p e c t a t i o n s . Her behaviors and f e e l i n g s showed a r e d u c t i o n in determination  and p s y c h o l o g i c a l growth due to  f o r t h i s major P:  grieving  loss:  When I went back to school apart.  self-  I thought  in September,  I  fell  I was strong as a horse but I  177  wasn't;  it  shattered  physically work  load  cloud,  and  yet  or I  to  poignancy  and  stated  caring  I  it's  tolerate me  like  to  me,  a  that  2  I'm  fine,"  challenge  slapped  feeling  the  I  almost  seem t o  get  saying,  school;  my c o u r s e s .  now,  I  of  loss  has  still  recalled  P:  other  day  love,  I  so young,  in  the  nature  "You c a n ' t  cry,  started  to  come up  yet,  or  She  also  be  was  that  losses  a young  in way  or  and  is  just  progress  me.  this I  not  woman,  pain  and  life.  that  And  feeling at  sorrow:  in  any  of  sadness and  been  I  hurt  vulnerable acute  perception  rejection  I  way.  indicated her  in  them,  having  extremely  which  by  This  looked  traumatized  damaged  with  favorable  with  by  again;  losses  losses  c o u p l e who w e r e  when  She r e a l i z e d easily  a  achieved.  described feeling  separations  self-worth  her  that's  that  scarred,  1979).  recalling  so untouched  to  to  been  saw  started  wanted  that  indicated  however,  (Simos,  that  and  of  time  myself,  have  me down  two  happened  Every  extend  (1979)  integration  other  all  couldn't  overwhelmed  better  this  I  Going to  quickly."  Simos  The  drop  I'm  not.  just  slapping  Fatigue  had  that  I'm  myself,  this  I  "Well,  ago  face.  emotionally,  on me.  and  thought, years  and  everything.  from  to  grief  of others  at  this  P:  time:  When a man l e f t that  attached  me r e c e n t l y , even t h o u g h  t o him; when he a c t e d  a f f e c t e d me p r o f o u n d l y , and  he c o u l d  fragile under  Therefore,  even  grief,  behaviors  The l a s t again;  s h e was c l e a r l y  feeling  just  very  I've been f e e l i n g  little  long;  thinks  upset  i t doesn't  2 years  still  and I ' l l t h i n k  now.  My t e t h e r  take  much t o u p s e t  days.  I'm j u s t n o t  I'm ok, and e v e r y o n e  I'm ok, b u t i t s u r e  that  Most women and  shaky  as I was; d e f i n i t e l y more on t h e s u r f a c e .  I c a n go a l o n g  to  really  f e e l i n g s and  patience  me, o r t o push me t o o f a r t h e s e  else  self-determination  d o u b t s , unwanted  I have  strong  i n h i b i t e d her  growth:  emotions.  as  squished  the radical  and r e d u c e d  few weeks  isn't  felt  changed,  and f e e l i n g s w h i c h  of self-worth  psychological  I just  18 months a f t e r  due t o a c u t e  perception  I'm much more  T h i n g s have j u s t  is different.  experiencing  P:  chuck me away.  i n my e m o t i o n s b e c a u s e  h i sheel.  so c o l d , i t  as i f I was no c o n s e q u e n c e  everything  surgery,  and  just  I wasn't  experiencing  much  equilibrium.  in this  after  doesn't take  study  radical acute  were  surgery. grief  interviewed  between 1  T h e s e women were  due t o t h e s e c o n d  stage  of  the grieving  with  process.  p r o f e s s i o n a l emotional One woman was  surgery and  bladder.  support,  into  favorite  after  radical  integrated the surgery's  vagina,  the grieving  the radical  that  l o s s e s and  In a d d i t i o n , t h e d e a t h  of her  s u r g e r y had  process.  d e s c r i p t i o n s showed t h a t , due t o  of the surgery,  remained  4 years  time.  t h e l o s s o f her u t e r u s ,  n i e c e soon a f t e r  T h i s woman's effects  at t h i s  and h e r d e s c r i p t i o n s i n d i c a t e d  her l i f e .  compounded  were n o t p r o v i d e d  She had n o t r e c e i v e d p r o f e s s i o n a l  had u n f a v o r a b l y  grief  support  interviewed  w h i c h had c a u s e d  emotional she  Y e t , they  inhibited.  her p e r c e p t i o n of s e l f - w o r t h  She had l i t t l e  ability  for self-  determination  and p s y c h o l o g i c a l growth b u t , i n s t e a d , was  fearful  future  about  despairing, her P:  losses, f e l t  and became  unbearably  extremely tense  l o n e l y and  when d e s c r i b i n g  feelings: Hurt,  yeah,  nothing  I feel  there  awful  anymore.  down and h u r t . I can't  jump on t h e bus and go v i s i t overnight.  have a c c i d e n t s friends like  go t o work,  somebody  I f I do, as c a r e f u l  come o n c e  as I am,  new f r i e n d s  now?  When  I still  And my o l d  i n awhile,  b e f o r e when we u s e d t o go o u t .  I can't  and s t a y  (due t o t h e u r o s t o m y ) .  now; t h e y  There's  but i t ' s not  How c a n I make  I d o n ' t go t o work, and I  don't  I really  go t o f u n c t i o n s ?  terribly.  I feel  I  I was  got s i c k  lonely like  miss  my  and t e r r i b l e .  a shut-in.  work, Ever  since  I dread the  Now,  weekends.  I t r y t o have someone i n f o r t h e  weekends.  My d a u g h t e r  all  t h e time.  I just  coming.  I tried  didn't.  What a day!  felt  like  What have ceiling think, is  pushed  and a f l o o r ?  to.  up I j u s t There  somebody  Four  And a f t e r  It'slike  was  around.  w a l l s and a  about  9 o'clock I  I think, There  when  "Thank God, I isn't  much t o l o o k  I have v i s i t o r s  come  f o r a week o r two, i t g e t s so sometimes I handle  i t when t h e y  it's  so q u i e t ;  than  i t used  darkness.  down.  Like  a r e gone.  Oh, boy, do I  i n t h e bottom o f t h e p i t ;  t h e house seem t e n t i m e s  t o be.  a l l the time.  quieter  The w a l l s seem t o w h i s p e r  I c o u l d n ' t have  empty b a r r e l ;  Like  for?  day t h r o u g h . "  feel  an  I cooked  I need  and done w i t h . "  ever  going  t o come and s h e  i t down t h e t o i l e t .  i t with.  come  i t i f I know no one i s  Whatever  I got t o l i v e  this  forward  can't  can't  " W e l l , w h a t e v e r was g o i n g t o happen t h a t day  over  here  dread  t o get a f r i e n d  flushing  no one t o s h a r e  or granddaughter  Being  i t ' s just  i tstill; lonely  I have t h e TV  i s like  so q u i e t  you c a n ' t move, o r c a n ' t s e e .  and  being i n  dense.  Somebody s h u t  me  in.  The  k i 1 1 i ng She had  s i l e n c e i s so  her  that the  surgery's  she  P:  s e l f - c o n f i d e n c e before  and  I had  five; than  d i d not  no  cook up four  can't  something  people  at the  had  with  access  even  seams.  It  to avoid  If  it.  avoided,  showing  - Continuing  the  grief  - Repressing  four  or  anymore  I don't t h i n k a chance.  I  I could I'd  confidence  fall  is  me?  possible, sharing  surgery.  She  support,  to others  p a i n of  was  t o deny t h e  for  her  d i d not  have  and  also  she  "weak."  g r i e v i n g can  t h a t many b e h a v i o r s  grief,  Intellectualizing  I worked  g e t t i n g worse, g e t t i n g  u n c o m f o r t a b l e and experiencing  of  I have  sense of  as much as  after  this:  a l l s h a k y , and  i f I had My  i s known t h a t t h e  intensely  is  effects  surgery.  a party  What would happen t o  others  that  the  I get  to p r o f e s s i o n a l emotional  believed  -  i n now,  I have f e a r o f  sicker.  grief  noise  psychological  t o change  new.  seem t o cope w i t h  gone.  She  know how  problem having  h a n d l e work now, apart  the  negative  s e l f - d e t e r m i n a t i o n and  growth but I had  that  me.  realized  reduced  silent  be are  used  example:  loss.  about the  loss.  feelings.  - Macho m e n t a l i t y  ("I'm  strong;  I can  handle  i t by  myself"). - Using  alcohol  - Prolonged  or drugs.  attempt  (Whitfield,  t o get the l o s t  others.  P:  about  t o t h e m a c h o - m e n t a l i t y and  her l o s s e s t o a v o i d g r i e v i n g :  and when my n i e c e  back t h e n .  bottled but  up, l i k e  I can't  even f i n d and  talk  it.  just Other grief  something  i t ' s there,  I would maybe  i f I had t o meet e v e r y I'm p u t t i n g  emotional  now j u s t  talking  i t helps  week  i t on t h e  y o u ; I'm b e t t e r o f f .  You s e e about  me none; i t  i n t e g r a t i n g a major  a prolonged  t o happen, h o p e l e s s n e s s , (Simos,  contribute to resigned, which  I know  It's a l l  i t up a l l t h e more.  are feeling  perceptions  myself.  It hurts.  signs of unfavorably  not worthwhile  hold i t  I've g o t t o l i v e  y o u , and I d o n ' t t h i n k  brings  the b i g  I couldn't  screw.  T h i s way  as I t o l d  I'm g e t t i n g v e r y with  a tight  get at i t .  about  now.  day w i t h  i t depressing  back b u r n e r  it  died.  I'm a l l r i g h t  tomorrow and t h e n e x t  is  f e e l i n g s when  I'd spend most o f t h e day c r y i n g a f t e r surgery  and  her v u l n e r a b l e  She s u b s c r i b e d  intellectualized  back.  1987, p. 9 3 ) .  T h i s woman r e p r e s s e d with  object  1979).  passive,  inhibit  loss  sense o f w a i t i n g f o r and a s e n s e t h a t These f e e l i n g s and f a t a l i s t i c  s e l f - d e t e r m i n a t i o n and  life  psychological P:  growth:  You s e e my mother was way o v e r forty-six strong; got  when she had me,  she'd  had e i g h t  just  supposed  luck,  i t was.  couldn't  this  body had t o t a k e  bombshell  Even now  to f a l l .  h e r e on t h i s  it. I  no m a t t e r what.  I'm w a i t i n g  And t h e l u c k y  what  I was b o r n  t o me t h e p a s t  I born a t a l l ? "  people born h e a l t h y ; hardly  My  f o r the  people get the  sail  have a h a n g n a i l ,  I think  and what has  years,  I wonder,  I'm i n c l i n e d  they  right  into,  about t h e purpose o f l i f e .  heart  avoid  and t h e u n l u c k y ones d o n ' t . When  been h a p p e n i n g  they  no m a t t e r i f  T h e r e ' s heaven and h e l l  earth.  about myself,  Lord  born;  t o go t h r o u g h ,  surgery,  was  i t , w h a t e v e r t h e body was  i n t e n d i n g t o do.  breaks  Cancer  everything i s  on y o u r head, you c a n ' t avoid  So I've  me a l l t h e t i m e .  i n t h e book, t h e day you were  stand  that  It's a matter of  I think  w h a t e v e r you a r e g o i n g  any  before.  t o happen.  t o happen t o me.  t h e way  written  was  children  waiting  I think  and h e r body wasn't  t o have s o m e t h i n g wrong w i t h  I was an a c c i d e n t  you  forty,  "Why  to question the T h e r e a r e some  right  through  and t h e n t h e y  attack  and "boom,"  i t ' s over.  answers;  a l l I think  i s , "Not f a i r , "  life,  d i e of a  I can't get that's  all, go  "Why  do some p e o p l e have  through  The  unfavorable  i n t e g r a t i o n o f l o s s and g r i e f  inhibits  reduces  self-determination  other  the perception  self-determined  of self-worth  I didn't  cancer  A favorable  o p t i m i s t i c and integration of  t o renew a woman's radical  with  being  in the future.  and gone t h r o u g h  had a p u r p o s e  surgery:  was a l w a y s an i s s u e  want t o a d o p t , s o , maybe t h i s  children  g r o w t h . On  positive  mostly  after this  and t h a t  a way o f d e a l i n g  adopt  it  life.  and  favorable  developed  and f e l t  i s necessary  I was a d o p t e d  is  losses  about  and g r i e f  perception P:  and p s y c h o l o g i c a l  o f l o s s and g r i e f  meanings f o r t h e i r  loss  of self-worth  hand, t h e women who showed  integration  don't  a l l the pain?"  clearly  the  i t and o t h e r s  whole  adopted myself Since  a l l that;  i n i t , and my  f o r me.  if  that  like  was what  I somehow c h o s e t o go t h r o u g h ;  that  experience  t o go on and h e l p  others;  I think  healing. has  i n order  to  breast  cancer,  others  "Well,  i t through  on t h e o t h e r i t . "  t o help  with  I s a i d t o one o f t h e g i r l s  when you make out  t o be a b l e  you know, a l l of this  side, there  I  I've had  i t ' s almost  doing  thing  I had t h e  their  own  a t work  selfwho  i n t h e end, and you come  a r e some s i d e  benefits  I t ' s t o o bad p e o p l e have t o g e t as s i c k as  we d i d t o a p p r e c i a t e t h e f u l l n e s s  of l i f e .  I t does  make you a p p r e c i a t e what you've g o t , b e c a u s e 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 d e v e l o p i n g linked P:  t o her previous  negative  I am a f a i r l y p o s i t i v e cancer, time  triggered unhappy  it.  that  i t did.  I think i t  I was  b e f o r e my c a n c e r  I was i n .  He was an a l c o h o l i c .  like  he was e m o t i o n a l l y  said  t o myself,  like  this  It t o o k before any  more.  with  I'm g o i n g  I went  almost  up i n h i s  him a t one p o i n t ; I keep g o i n g on  t o make m y s e l f  into the hospital him t h a t  I  Not as i f he s e t  o r t o him; "I c a n ' t  I could t e l l  I couldn't  I t r y t o s t a y away f r o m  relationships She  t o deal  because  until  cruel.  b u t he was so s c r e w e d  mind t h a t ; t r y i n g  very  in this  back a t i t i n r e t r o s p e c t and i t was  t o be c r u e l ,  I got  I was i n a t t h e  look  out  sick."  though, h a n d l e him  negative  now.  a l s o showed s e l f - d e t e r m i n a t i o n i n h e r a b i l i t y  be a s s e r t i v e a b o u t  reconstruction P:  even b e f o r e  relationship.  I'm c e r t a i n  i n the year  relationship  to  person,  negative  was  relationship:  but t h e r e l a t i o n s h i p  was a v e r y  cancer  2 years  planning after  f o r a vaginal  surgery:  They d i d n ' t want t o do t h e r e c o n s t r u c t i o n b e c a u s e  they  were a f r a i d  more. with  The b l a d d e r scar t i s s u e ,  to the bladder properly. a vagina, is  i t would mess up my  and i t would  I told  t h e surgeon  having  and I s a i d ,  And he s a i d ,  "Well,  about  relationships  " W e l l , easy  f o r you t o  "What a r e you d o i n g ? "  w i t h men,  that.  he s a i d  What would you s a y ?  f o r developing  cancer  the t h r e a t of having  which  I thought,  sex i s good b u t n o t  and how would he f e e l  was f a v o r a b l y i n t e g r a t i n g  P:  i t ; I'm a v o i d i n g and t h a t ' s n o t  A n o t h e r woman d e s c r i b e d s i m i l a r reasons  and made  b o y f r i e n d , and I s a i d , "I  i t ' s not funny;  a penis?  wanting  " W e l l , sex  I t h i n k he u n d e r s t o o d  everything,  really like:  have one, and t h a t ' s j u s t  good."  together  be one more t r a u m a  and he made some comment  some comment a b o u t my don't  were a d h e s e d  even  and i t c o u l d t e a r and n o t h e a l  nice but...",  say."  and r e c t u m  bladder  i f he d i d n ' t have  Everything beliefs  is fine?"  about  indicated  her loss of s e c u r i t y  t h a t she due t o  cancer:  I l o o k back now and t h i n k  i t must have been t h e  most unhappy p e r i o d o f my  life;  before being  diagnosed  and  d e a l i n g with  you  could deal with  sure that  with  the cancer it.  those  cancer.  two y e a r s Grasping  was a r e l i e f  One d o c t o r  on  because  I spoke t o was  I was s o unhappy and t h e r e was s o much  stress, to  that  this  go i n t h a t  was t h e c a t a l y s t  direction;  f o r the c e l l s  t o become m a l i g n a n t and  domi n a n t . She  also  d e s c r i b e d d e v e l o p i n g awareness o f  psychological  growth  due t o h e r e x p e r i e n c e o f h a v i n g  cancer: P:  A l l o f my  life  blackness  inside  every  once  completely good,  I grew up w i t h o f me;  i n awhile  wondered what  knew  i t was i n s i d e o f me.  come t o t e r m s w i t h  it  was a p r e m o n i t i o n  it,  with  it. that  i n my  i t y e t ; I don't  i t than  I ever  for  this  shared  study.  I o f t e n wondered  whether  this  feelings  researcher. opportunity grief.  (the cancer)  I don't know  i f I've  i f the cancer  i n some way  I feel  was  more f r e e  after  the f i r s t  of g r i e f ,  her p e r s p e c t i v e about  fear,  her f i r s t  and shame w i t h t h e been h e r f i r s t  t o r e l e a s e her suppressed t h e second  interview  i n t e r v i e w , s h e had  The i n t e r v i e w had a l s o  During  know  was  have.  cancer  During  I always t o have  One woman d e s c r i b e d c h a n g i n g why s h e had d e v e l o p e d  were  I was g o i n g  life.  b u t I do know t h a t  from  Even when t i m e s  i t meant and when  g o i n g t o happen  o r r a g e , and  i t would come o u t and  to  dealt  a black storm  overwhelm me.  I still  a f e e l i n g of  feelings  of acute  i n t e r v i e w , she d e s c r i b e d  beginning which of  to  develop p o s i t i v e reasons  i n d i c a t e d she  s e c u r i t y due  P:  favorably  t o her  beliefs  I always thought t h a t happens t o  being too, but  i n the  punished not  that  just that i t has  don't  know now,  later  that  Before  you  but  you  had  I think  i t ' s done a  through  that  the  good o r  not,  I have t o  now,  I t r y t o do i s important  now;  do  good for i t ,  to  for a  a punishment,  are  that  going  you find  out  reason.  so  I've  life  a  b e c a u s e o n c e you  I feel  l o t of  I just matter  my  learned t o me  for this of  i n h i b i t e d by  which study  and how  self-worth l a n g u a g e and  try to  i f I was good.  I do  I never to  to  play playing I feel  or  learn  did  include has  you  more  things  I want t o p l a y  best,  go  i s more p r e c i o u s ;  more; e v e r y t h i n g  women's p e r c e p t i o n  historically  do  i t didn't and  and  punished  are  Everyday.  Before,  like  It  being  l o t f o r me  I t r y to  but  did  i t is for  experience  experience;  them w e l l .  they  surgery.  i t more.  tennis,  are  i t was  since  do  that  I think  that  cancer  i s a reason; i t ' s  maybe you  changed  ambitious;  like  some d i f f e r e n t meaning  I thought  treasure  Now  loss  cancer:  i f s o m e t h i n g bad  past  for.  experience  i n t e g r a t i n g her  about  someone, t h e r e  s o m e t h i n g bad  that  was  f o r her  before.  the  fact  been  beliefs  which  have n a r r o w l y Therefore, surgery, for  defined  female a b i l i t i e s  even w i t h o u t  the negative  a woman's p e r c e p t i o n  and n e e d s .  effects  of self-worth  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  been  of r a d i c a l and a b i l i t y  growth  have  inhibited: There a r e widely sexuality which the  education  representation  i n which  social  policy,  church  effects  this  of  these  to  the loss of  surgery  definitions  together  interests.  with  o f women's p l a c e as  medicine,  beliefs  education, (Weedon,  t h e m e d i a and  1987, p. 3 6 ) .  cause t h e l o s s e s o f  feel  negative  o f women who have s t r o n g l y  narrow v i e w o f f e m a l e  women w i l l  These a r e  i n t h e home, c a n be f o u n d i n  on t h e s e l f - i m a g e  This  tothe  and s e x u a l i t y t o have s i g n i f i c a n t  internalized  from  o f female s e x u a l i t y , which  and e l s e w h e r e  These s o c i e t a l fertility  lifestyle  i n d i v i d u a l s have v e s t e d  and f o r e m o s t  social  and  i n t h e media.  i t as n a t u r a l l y p a s s i v e ,  dominant  the  place  female  and employment  o f women  Dominant d i s c o u r s e s  first  about  a whole range o f d i s c u r s i v e f i e l d s  family,  define  beliefs  and women's p r o p e r  cross  beliefs  held  a serious  identity.  Most  l o s s o f i d e n t i t y due  fertility.  s e c t i o n on t h e p e r c e p t i o n  i s concluded  of self-worth  after  by 1 woman's d e s c r i p t i o n o f how h e r  self-determination narrowly P:  defined  I think it  female  I would  and m i s s  I care, don't  has been d e c r e a s e d by i n t e r n a l i z i n g identity:  like  t o be a n u r s e a g a i n .  i t . There  and I'm p r o u d  like  housework;  just  want me t o work  of myself.  T h a t ' s why I  home and d o i n g t h e  t o go o u t .  My husband  i n the hospital  now.  t o h e l p him w i t h h i s b u s i n e s s ( w h i c h days  a week).  I don't  I"ve g o t t h e k i d s It's  not f a i r .  today,  I don't need  just  in  relax  If I don't  know how men a r e .  thing."  But  I go home and t h e n I  Actually,  I have t o p l a n  i n the evening.  sometimes I  do i t p r o p e r l y , t h e r e i s no day  i t . My husband  He goes  in the  there i s nothing to eat  go, b u t he d o e s n ' t  have t i m e t o cook. late  Sometimes he s a y s ,  I buy t h e g r o c e r i e s ,  you  a day f r e e  b u t I'm t o o t i r e d  cook,  my husband  and  I need  them.  I want t o go do e x c e r c i s i n g  centre,  let  f o r me.  she does, s i x  and go do y o u r  know where t o go.  the evening.  says  know how.  t o buy g r o c e r i e s .  evening.  He wants me  g e t t o go o u t f o r m y s e l f .  My husband  a t t h e community  doesn't  and I have t o l o o k a f t e r  f o r me, b u t I d o n ' t "Now,  I enjoy  a r e a l l k i n d s o f p e o p l e and  staying  I like  a  early  doesn't  i n t h e morning  Summary In t h i s Radical  l a s t major c a t e g o r y ,  Surgery  descriptions  For G y n e c o l o g i c a l Cancer,  of their  Beliefs  showed how m e t a p h o r i c a l had  negative  effects  metaphorical  effect  language s u p p o r t e d  fear,  from  feelings  cancer  horror  others  d i d not prevent  Creative writing,  fragility.  and i s o l a t e  cancer.  One  themselves  experiencing  The women needed these  feelings  about  knowledge  These  feelings  emotional  intense  f o r example, was a l s o  women e x p r e s s  In t h e s e c o n d  feelings.  helpful in  cancer.  s u b - s e c t i o n , Changes  In Body  And F u n c t i o n , t h e women d e s c r i b e d how t h e s e  c h a n g e s had n e g a t i v e e f f e c t s Specifically,  on s e l f - i m a g e .  the loss of f e r t i l i t y  loss of enjoyable urostomy  this  them f r o m  t o e x p l o r e and e x p r e s s  Structure  Specifically,  t h e women's i n t e l l e c t u a l  were o f t e n s u p p r e s s e d .  helping  cancer  increased f e e l i n g s of  and shame a b o u t h a v i n g  support  to describe  support.  In a d d i t i o n , about  Cancer,  was t h a t t h e women t e n d e d t o  d i a g n o s i s from  emotional  t h e women's  negative subjective  shame, and e m o t i o n a l  of these  hide t h e i r  language used  which  After  And F e e l i n g s About  on s e l f - i m a g e .  meanings about c a n c e r intense  Self-image  vaginal  had s i g n i f i c a n t  and t h e v a g i n a , t h e  i n t e r c o u r s e , body negative  effects.  s c a r s , and a The women  193  needed t o f e e l emotionally needed their  s u p p o r t i v e and g e n t l e p a r t n e r .  sexual  female  i n order  of these  t o develop  negative  internalization  identity  acceptance  depended on  Influential  and immoral  of their  sexual  s u b - s e c t i o n , Percept ion-Of  affected  major  self-worth  takes  self-  growth.  their  appeared  after  in their  the perception of  s e l f - d e t e r m i n a t i o n and The g r i e v i n g  behaviors  t o be most  Furthermore,  enhanced  of grieving the  inhibited  between 2 and 4 y e a r s  descriptions,  surgery.  losses later  and r e d u c e d  psychological  grieving  p r i d e and s t r e n g t h  However, t h e p r o c e s s  surgery's  loss  The women d e s c r i b e d  o f s e l f - w o r t h f o r s e v e r a l months  due t o f e e l i n g  recovery.  needs.  and p s y c h o l o g i c a l growth were a l s o  by t h e s u r g e r y .  perception  which  Self-Worth,  t h e 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 , determination,  about  historically  as abnormal  women's e x p r e s s i o n  In t h e t h i r d  surgery  and  of society's b e l i e f s  w r i t i n g s have  female s e x u a l i t y  inhibited  effects  and f e m a l e s e x u a l i t y .  and p o l i t i c a l  labelled has  body  extent  e a c h woman's  medical  also  of self-image.  The  the  They  c o u n s e l l i n g and encouragement t o look a t  changed  approval  s e x u a l l y d e s i r a b l e and be w i t h an  process  f o r a major  and, f r o m t h e women's  and f e e l i n g s intense  of acute  1 t o 2 years  t h e women's a b i l i t y  after  to perceive  self-worth  was  definition  of the  This findings  concerning  findings  inhibited  female  concludes  summary and the  also  by  society's  identity.  Chapter  Four  which  presented  women's e x p e r i e n c e s  c o n c l u s i o n s of the are presented  narrow  study  i n Chapter  and  and  the  needs.  The  implications  Five.  of  CHAPTER SUMMARY, CONCLUSIONS, AND  FIVE IMPLICATIONS FOR NURSING  Summary The  study  subjective  was a q u a l i t a t i v e  experiences  experienced  radical  investigation  ofthe  and needs o f f i v e women who had  surgery  This  surgery  part  or a l l of the vagina  f o rgynecological  was d e f i n e d as t h e r e m o v a l  cancer.  of the uterus,  a n d , i n some c a s e s , t h e  bladder,  lower b o w e l , and o v a r i e s due t o i n v a s i v e  cancer.  Although  experience body  i t i s known t h a t many  prolonged  and s e l f - e s t e e m a f t e r  towards  this  r e s e a r c h on women's s u b j e c t i v e e x p e r i e n c e s and  needs f o l l o w i n g t h i s Therefore, order  d e p r e s s i o n and n e g a t i v i t y  image, s e x u a l i t y ,  surgery,  women  surgery  a qualitative  to describe specific  contribute  i s lacking. study  was p r o p o s e d i n  subjective factors  to the s i g n i f i c a n t  negative  which  effects  of t h i s  surgery.  A feminist theoretical  rationale  f o r a n a l y z i n g women's s u b j e c t i v e e x p e r i e n c e s  by  studying their  framework p r o v i d e d a  verbal d e s c r i p t i o n s of the experience.  Two r e s e a r c h q u e s t i o n s  guided  the study:  What a r e women's p e r c e p t i o n s o f t h e i r and  needs a f t e r  cancer,  radical  surgery  f o r gynecological  and how do women e x p e r i e n c e  e s t e e m and s e x u a l i t y  after  this  experiences  self-  radical  surgery?  The for  t h e study  reality the with  phenomenological in order  r e s e a r c h method was  t o understand  o f t h e women's e x p e r i e n c e s .  d a t a were c o l l e c t e d  f o r g y n e c o l o g i c a l cancer  years.  Two  each woman.  each  lasted  headings  interviews radical  description  process  of analyzing  c a t e g o r i e s with  sub-  which p r o v i d e a  of the f i v e  women's s u b j e c t i v e  T h e s e c a t e g o r i e s and s u b - h e a d i n g s d e s c r i b e  common themes w h i c h  emerged from  the interviews.  M a j o r C a t e g o r i e s and S u b - h e a d i n g s I.  FINDING OUT Sensing Reacting  ABOUT HAVING GYNECOLOGICAL CANCER  That  S o m e t h i n g Was  To The C a n c e r  Needing Support Understanding II.  PHYSICAL  From  The  Wrong  Diagnosis  Others  Surgery  RECOVERY AFTER  RADICAL  GYNECOLOGICAL CANCER N e e d i n g Time To R e g a i n Bowel  and  hours.  the phenomenological d a t a , t h r e e major  4  conducted  A l l i n t e r v i e w s were t a p e - r e c o r d e d ,  between 1 and 3  experiences.  method,  within the previous  were g r a d u a l l y d e v e l o p e d  meaningful  this  i n t e r v i e w s , 6 months a p a r t , were  with  subjective  Using  had e x p e r i e n c e d  surgery  Using  the s u b j e c t i v e  during unstructured  each o f f i v e women who  selected  And B l a d d e r  Strength  Problems  SURGERY FOR  Vaginal III.  Healing  And  Reconstruction  SELF-IMAGE AFTER RADICAL GYNECOLOGICAL  SURGERY FOR  CANCER  Beliefs  And F e e l i n g s About  Changes  In Body S t r u c t u r e And  P e r c e p t i o n Of  Cancer Function  Self-Worth Cone 1 us i o n s  The surgery  women's d e s c r i p t i o n s c l e a r l y f o r g y n e c o l o g i c a l cancer  physically  traumatic  i n two m a j o r  needs and  experiences.  Emotional  Needs And  1.  areas:  radical  was an e m o t i o n a l l y and  experience.  presented  show t h a t  Conclusions are  emotional  and p h y s i c a l  Experiences  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  surgery  effects  of r a d i c a l  caused  emotional  d i stress. 2.  The l a c k o f a d e q u a t e e m o t i o n a l to the s e v e r i t y  o f t h e women's  support  contributed  emotional  di s t r e s s . 3.  4.  The women p e r c e i v e d  little  emotional  health  p r o f e s s i o n a l s when t h e y  cancer  diagnosis.  I t was d i f f i c u l t  support  due t o f e e l i n g s  from  were t o l d t h e  f o r t h e women t o a c c e p t  adequate emotional friends  support  from t h e i r  of i s o l a t i o n ,  or o b t a i n  f a m i l y and shame,  198 reluctance inability 5.  t o show e m o t i o n a l of others  emotional  not  They  understanding Metaphorical  support. level of  p h y s i c a l and  i n t i m i d a t e d and p h y s i c i a n s and d i d  t o ask i n o r d e r  l a n g u a g e commonly u s e d  from  t o g a i n an  physical  effects.  to describe  i n c r e a s e d t h e women's f e e l i n g s  loss of the vagina,  sexual to  of horror,  others.  t h e l o s s o f enjoyment o f  i n t e r c o u r s e , and t h e l o s s o f body  l a r g e body  effects  Developing  identity  caused  a new i d e n t i t y  prolonged  negative  patriarchal  was d i f f i c u l t  definition  had been promoted  childhood. identity  scars),  image ( d u e  on s e l f - i m a g e .  traditional  9.  their  and t h e  The women d e s c r i b e d how t h e l o s s o f f e r t i l i t y , the  8.  felt  of the surgery's  shame, and i s o l a t i o n 7.  with  v u l n e r a b l e when w i t h  know what q u e s t i o n s  cancer  emotional  about t h e s u r g e r y ' s  effects.  emotionally  6.  t o provide  The women were d i s s a t i s f i e d understanding  vulnerability,  Internalizing  had n e g a t i v e  when t h e  o f female  d u r i n g t h e woman's a narrow  effects  female  on s e l f - d e t e r m i n a t i o n .  The women's p e r c e p t i o n s o f s e l f - w o r t h were enhanced about the  by t h e i r  surviving  surgery,  feelings  cancer,  initially  o f p r i d e and s t r e n g t h  recovering physically  and o v e r c o m i n g  severe  pain.  from  10.  G r i e v i n g f o r t h e s e v e r a l major radical  surgery  surgery. process of  became i n t e n s e 1 t o 2 y e a r s  The women d i d n o t u n d e r s t a n d but thought  grief  which  developed  feelings  grief and  ability  after 11.  inhibited  The b e h a v i o r s  i n t e g r a t e d l o s s and  t h e women's p e r c e p t i o n o f s e l f - w o r t h  f o r s e l f - d e t e r m i n a t i o n , even 4 y e a r s  The e x p r e s s i o n o f f e e l i n g s reduced  Due t o n e g a t i v e found  illness.  after  surgery.  dramatically 12.  after  and f e e l i n g s  s e v e r a l months  of unfavorably  by t h e  the grieving  that the behaviors  s u r g e r y were s i g n s o f m e n t a l and  l o s s e s caused  personal  meaning  listener  anxiety.  beliefs  it difficult  t o an e m p a t h e t i c  about c a n c e r ,  t o develop  some women  a satisfactory  about t h e e x p e r i e n c e  of having  cancer. Physical 1.  Needs And E x p e r i e n c e s  The women were s u r p r i s e d  and f r u s t r a t e d  extent of t h e i r  weakness due t o t h i s  surgery  physical  and needed  at least  by t h e  t h r e e months t o r e g a i n  strength. 2.  The women had s e r i o u s and p r o l o n g e d due  3.  to this  bladder  problems  surgery.  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  p a i n d u r i n g v a g i n a l mold  changes.  200 The  women who were s e x u a l l y  severe pain  during  for  months a f t e r  several  attempts  active described at sexual  having  intercourse  surgery.  Imp!icat ions Implications  For Nursing  Although not  radical  Practice  surgery  f o r gynecological  cancer i s  a common p r o c e d u r e , much o f t h e i n f o r m a t i o n  from t h i s  study  gynecological study's after  has i m p l i c a t i o n s f o r g e n e r a l  nursing  practice.  f i n d i n g s have  and o v a r i e s  In p a r t i c u l a r , t h e  implications f o r nursing  t h e common s u r g i c a l  uterus  gained  care  procedure o f removing t h e  due t o c a n c e r ,  f i b r o i d s , or  endometr i os i s. Emotional  Problems  From t h e t i m e t h a t suspected,  t h e women  support.  A referral  community  health  with  t h e c a n c e r was d i a g n o s e d , o r even  in this  study  needed  f r o m t h e women's p h y s i c i a n s t o  n u r s e s would have p r o v i d e d  e a r l y and o n g o i n g  professional  support.  have h e l p e d  t o r e d u c e t h e women's a n x i e t y  exploration  and v e n t i l a t i o n  feelings  about  gynecological for  cancer, cancer  of their  providing  and r a d i c a l  care  s e r v i c e s by community  t h e women This  would  through the  b e l i e f s and  information surgery,  e a r l y home-assessment and f a m i l y  health  emotional  about  and a l l o w i n g  counselling.  health  nurses  Such  would  201  ensure c o n t i n u i t y o f care support  f o r emotional  and p r o v i d e p r o f e s s i o n a l  and p h y s i c a l h e a l i n g a f t e r  this  surgery. Health emotional surgery  p r o f e s s i o n a l s should  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 o h e l p them u n d e r s t a n d  grieving grief.  and a c h i e v e The l a t t e r  feelings  about  Community  h e a l t h nurses  of g r i e v i n g  receive  emotional  counsellors  could help  surgery  The  listener.  of other  d i s t a n c e c o u l d be  women who have  and a r e w i l l i n g  and e m o t i o n a l  effects  with  Ensuring  specific  during  It i s important  type  experienced  t o correspond.  support  of t h i s  their that  of surgery  women who have had s i m i l a r  that these  each o t h e r  Women  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  e d u c a t i o n a l m a t e r i a l s and v i d e o s  prolonged  women  g r o u p s when n e c e s s a r y .  in the hospital.  develop  expression of  f a c i l i t a t e the  women a l s o d e s c r i b e d n e e d i n g  information  o f l o s s and  from o t h e r p r o f e s s i o n a l  g r o u p s due t o g e o g r a p h i c a l  similar  visits  t o an e m p a t h e t i c  support  t h e addresses  period  integration  radical  of acute  and a l s o e n s u r e t h a t t h e s e  and s u p p o r t  who a r e u n a b l e support  a favorable  the loss  this  the behaviors  r e q u i r e s the repeated  process  given  be aware t h a t women need  recovery nurses  about t h e and o r g a n i z e  surgery.  women a r e a b l e t o communicate  i s an i m p o r t a n t  nursing  intervention.  with A  liaison  between h o s p i t a l and community  needed t o e n s u r e t h a t counselling discharge  by u s i n g  dilator.  and  help  liking  a mirror  vagina  this  about  changed  body p a r t s  study  and h a v i n g  increase bladder  teach  self-image with  pelvic  floor  after  with  this  nurses might  help  the vaginal  bladder  exercises  gynecological  experiencing  prolonged  c o n t r o l problems.  on h a n d l i n g  about odor  control will  surgery.  and could  a s w e l l as improve  The women d e s c r i b e d from u r i n a r y  which  Information  stress incontinence  bladder  s e v e r a l weeks.  concerned  Looking a t  p o s i t i v e experiences  of accepting  control after  encouragement t h a t after  as r e d u c i n g  body s c a r s , and o s t o m i e s .  women d e s c r i b e d  given  i n accepting  Problems  Nurses c o u l d  significant  step  seeing the  by t h e women as e n h a n c i n g t h e  the process  reconstruction,  be  as w e l l  A p o s i t i v e experience  women t o b e g i n  The  stated that  caring for the reconstruction.  development o f a s a t i s f a c t o r y  Physical  speculum or  was an i m p o r t a n t  were d e s c r i b e d  surgery.  before  at the reconstructed  and a g l a s s  new body p a r t  anxiety  others  women t o look  The women i n t h i s  reconstructed  services  hospital.  Nurses c o u l d vagina  nurses i s  t h e women a r e r e f e r r e d f o r  and home-care s u p p o r t  from  health  slowly  being  incontinence.  Telling  a woman a b o u t t h e u s e o f a p l a s t i c bottle,  f o r example, r e d u c e d  showers each  this  surgery,  vaginal  was a l s o  especially  importance  of ingesting  high  foods  perhaps,  Nursing  problem  education  support  stool  experienced  s o f t e n e r s , l a x a t i v e s , and s u r g e r y and,  Students  trauma t h a t  of this  the grieving provide  process.  practice  the extent of  i s o f t e n caused  women's s t u d i e s s h o u l d education continue  They s h o u l d  by p e r s u a s i v e  writings.  t o oppress  explore female  social,  An i n t r o d u c t i o n t o  be an e s s e n t i a l  since patriarchal  negative  by t h e l o s s o f  loss t o the s o c i a l i z e d  shaped  e c o n o m i c , and p o l i t i c a l  significant  the s k i l l s of  should  and l o s s e s i n s e x u a l i t y .  historically  attitudes  facilitate  emphasis  of sexual c o u n s e l l i n g .  the r e l a t i o n s h i p identity  particularly  need t o u n d e r s t a n d  psychological fertility  provide a greater  nursing education  the s k i l l s  surgery.  Education  should  which  after  Nurses c o u l d emphasize t h e  For Nursing  In a d d i t i o n ,  nursing  a significant  as soon as p o s s i b l e a f t e r  counselling s k i l l s ,  emotional  in  f o r several  even d u r i n g t h e w a i t i n g p e r i o d b e f o r e  Implications  on  cleansing  her energy.  f o r women who  reconstruction.  fiber  1 woman's need  day and c o n s e r v e d  Constipation  perineal  element i n  b e l i e f s and  women and a c t as a  f o r c e i n s e v e r a l areas  o f women's  health. Implications The areas  Research  findings of this  study  suggest  i n which f u r t h e r r e s e a r c h  Similar  and o t h e r  major  t o determine i f there  concern  the following  would be o f v a l u e .  s t u d i e s o f women who have e x p e r i e n c e d  hysterectomy help  For Nursing  which s h o u l d  interventions.  gynecological  surgery  would  a r e common needs and a r e a s o f  be a d d r e s s e d  Further  total  study  by n u r s i n g  o f bowel  and b l a d d e r  p r o b l e m s and c o n c e r n s would be o f a s s i s t a n c e t o n u r s e s in  developing  Additional of For  p r o t o c o l s and n u r s i n g i n t e r v e n t i o n s .  s t u d i e s o f t h e d e v e l o p m e n t and e f f e c t i v e n e s s  pre-operative example,  touch  teaching  the value  a v a g i n a l mold  assessed.  techniques  o f a l l o w i n g women t o s e e and  prior  Identification  t o r e c o n s t r u c t i o n c o u l d be and e v a l u a t i o n o f n u r s i n g  i n t e r v e n t i o n s w h i c h promote grieving in  process  related  s e x u a l i t y would h e l p  nursing  care.  would be u s e f u l .  a f a v o r a b l e outcome o f t h e  t o loss of f e r t i l i t y t o enhance  and l o s s e s  the quality of  In summary, experiences  and needs a f t e r  gynecological support such grief  t h e women's d e s c r i p t i o n s o f t h e i r  cancer  radical  show t h a t a d e q u a t e  i s r e q u i r e d t o manage t h i s  support, caused  achieved.  type  life  a favorable integration by t h e s u r g e r y  This,  i s more  in turn, will  illness  of surgery.  general  emotional  direction  support  likely  t o be  d e p r e s s i o n and  bereavement a f t e r  this  f r o m t h e p h i l o s o p h y and  t o these  nursing goals of i l l n e s s  promotion.  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A new approach t o t h e measurement 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 what they 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 . Journal o f Health and Social 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 ) . Quality of life following pelvic 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 . 12. 355-366. Vickers, J . (ed.). (1984). Taking sex into account: The p o l i c y consequences o f s e x i s t research. Ottawa: Carleton University Press. W e b b , 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 excerpts. In 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 of o u r s e l v e s ( p p . 16-33). Alaska: Vanessapress.  Webb, C. ( 1 9 8 5 ) . situation. 54.  G y n a e c o l o g i c a l n u r s i n g : A compromising J o u r n a l o f Advanced N u r s i n g . 1 0 ( 1 ) . 47-  Weedon, C. ( 1 9 8 7 ) . structuralist W h i t f i e l d , C. Florida:  Feminist theory.  p r a c t i c e and p o s t New Y o r k : B a s i l B l a c k w e l l .  (1987). H e a l i n g the c h i l d H e a l t h Communications.  within.  W i l e y , L. ( e d . ) . ( 1 9 7 9 ) . Dealing with depression a f t e r radical surgery. N u r s i n g '79. F e b r u a r y , 47-51.  213 APPENDIX A Information  And C o n s e n t  My name i s Dayna J a n y c e . I am a r e g i s t e r e d n u r s e c o m p l e t i n g my m a s t e r ' s d e g r e e i n n u r s i n g a t t h e U n i v e r s i t y o f B r i t i s h Columbia. My r e s e a r c h s t u d y i s on t h e e x p e r i e n c e s o f 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 o f t h i s s u r g e r y have n o t been a d e q u a t e l y 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 n e c e s s a r y t o improve n u r s i n g c a r e . 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 w i s h t o p a r t i c i p a t e i n my r e s e a r c h , I w i l l need two, hour l o n g i n t e r v i e w s w i t h you a t y o u r convenience. During these interviews I w i l l tape-record t h e two o f us t a l k i n g a b o u t your e x p e r i e n c e s . You may r e f u s e t o answer q u e s t i o n s and you may a l s o ask f o r any p a r t o f t h e t a p e t o be e r a s e d . I w i l l be s e n s i t i v e t o your f e e l i n g s . Your i d e n t i t y w i l l be k e p t 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 u s e 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 m e n t i o n o f names o r o t h e r 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 e r a s e d . PLEASE UNDERSTAND ALSO THAT YOU MAY STOP PARTICIPATING IN MY RESEARCH AT ANY TIME WITHOUT PENALTY. P l e a s e c a l l me i f you w i s h t o p a r t i c i p a t e o r i f you have f u r t h e r q u e s t i o n s b e f o r e a g r e e i n g t o part i c i pate. phone tt Thank-you, Dayna J a n y c e , I hereby Janyce's I have a that the  R.N.  g i v e my c o n s e n t t o p a r t i c i p a t e i n Dayna 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 copy o f t h i s i n f o r m a t i o n and c o n s e n t form and s t u d y has been a d e q u a t e l y e x p l a i n e d t o me.  Signed Witness Date Title  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 F e m i n i s t Phenomenological  Study  

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