Living with a new normal: women's experiences following treatment for early-stage breast cancer ...

358 Pages·2017·2.26 MB·English

by  Christine Middleton

Trusson, Diane (2013) Living with a new normal:
women’s experiences following treatment for early-stage
breast cancer or DCIS. PhD thesis, University of
Nottingham.
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Living With a New Normal:
Women‟s Experiences
Following Treatment for
Early-Stage Breast Cancer
or DCIS

Diane Trusson MA,
PG Cert. Soc.Sci.(Open), BA (Joint Hons.)

January 2013

School of Sociology and Social Policy
Thesis submitted to the University of
Nottingham for the degree of Doctor of
Philosophy.
Abstract

This thesis explores the experiences of 24 women who were
treated for early-stage breast cancer (ESBC) or ductal
carcinoma in situ (DCIS) in the UK between 6 months - 29
years previously. These experiences are important because
better detection and treatments have resulted in increasing
numbers of women surviving for longer. My own experience
of ESBC, revealed in extracts from my research journal,
brought both benefits and drawbacks to the research but
ultimately resulted in a unique perspective. Participants
accessed through a press release were interviewed in-depth.
Data were then analysed using narrative and thematic
analysis. Bury‟s (1982) concept of illness as a biographical
disruption was used as the theoretical framework but a
consideration of the context revealed that ESBC/DCIS is not
always experienced as disruptive. Analysis also revealed that
the post-treatment period can present further challenges as
loss of medical support can coincide with withdrawal of social
support. Some participants reported feeling isolated and
vulnerable post-treatment. Often their feelings were at odds
with public expectations based on media representations of
„successful‟ breast cancer survivors, and the high profile of
breast cancer charities which can suggest „pink fluffy‟ imagery.
Ongoing disruption to their bodies and relationships can mean
that women feel in an ambiguous state which can be likened
to a state of liminality (Turner, 1969). The current research
combines the concepts of biographical disruption and liminality
for the first time in a study of ESBC/DCIS, therefore enabling
consideration of gendered aspects of the experience. In
particular, the importance of breasts to femininity and
sexuality can have implications for identity and relationships. I
argue that, whilst women do not return to the „normality‟ of
pre-diagnosis, the wide range of experiences and emotions in
the post-treatment period can be conceptualised as a „new
normal‟.
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Contents

Abstract ____________________________________________________________ 2
Contents_______________________________________________________ 3
Acknowledgements ______________________________________________ 6
Preface ________________________________________________________ 7
Chapter1. Introduction and research context ________________________ 10
Media ___________________________________________________________ 14
Metaphors _______________________________________________________ 16
Charity campaigns _________________________________________________ 18
Research questions ________________________________________________ 22
Structure of the thesis ______________________________________________ 25
Chapter 2. Literature review ______________________________________ 27
Introduction ______________________________________________________ 27
Section 1: Illness as a social role with social consequences ________________ 29
Section 2: Biographical disruption ____________________________________ 33
Meaning _____________________________________________________________ 35
Biographical disruption and gender ________________________________________ 39
Stigma _______________________________________________________________ 43
Section 3: Biographical disruption and the end of treatment _______________ 48
End of treatment as crisis ________________________________________________ 50
Liminality _____________________________________________________________ 52
Liminality in other contexts ______________________________________________ 54
Liminality as a biographical disruption ______________________________________ 57
Chapter summary _________________________________________________ 59
Chapter 3: Research design ______________________________________ 61
Methodology _____________________________________________________ 63
Patients’ perspective ____________________________________________________ 66
Insider status __________________________________________________________ 68
Emotions in research ___________________________________________________ 70
Ethical considerations ______________________________________________ 71
Sample __________________________________________________________ 73
The interview process ______________________________________________ 79
Analysis _________________________________________________________ 82
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Research relationships __________________________________________________ 84
Benefits and drawbacks of shared experiences _______________________________ 88
Chapter summary _________________________________________________ 91
Chapter 4. Biographical Disruption and Meaning _____________________ 93
Introduction ______________________________________________________ 93
Diagnosis _____________________________________________________________ 95
Trauma narratives _____________________________________________________ 102
The use of metaphors __________________________________________________ 106
Embodiment _________________________________________________________ 109
The role of hair loss in cancer identity _____________________________________ 110
Wigs _______________________________________________________________ 114
Cancer identity and stigma ______________________________________________ 118
No hair loss __________________________________________________________ 124
Biographical continuity _________________________________________________ 128
Biographical disruption as chronic illness ___________________________________ 131
Meaning as significance ________________________________________________ 134
Religion and spirituality ________________________________________________ 141
Chapter summary ________________________________________________ 146
Chapter 5. Biographical Disruption and Liminality:A New Normal? 149
Introduction _____________________________________________________ 149
Liminality _______________________________________________________ 151
Liminality as a biographical disruption _____________________________________ 153
Silence and Passivity ___________________________________________________ 157
Ambiguity ___________________________________________________________ 162
Breast cancer in context ________________________________________________ 165
Disruption to future plans _______________________________________________ 169
Alteration of perception of time __________________________________________ 172
Fear of recurrence_____________________________________________________ 175
Need for support after treatment _________________________________________ 181
DCIS ________________________________________________________________ 185
Identity _____________________________________________________________ 190
Chapter summary ________________________________________________ 198
Chapter 6 Living with a new normal part 1: Body ____________________ 200
Introduction _____________________________________________________ 200
Consequences for the body _____________________________________________ 202
Meaning of breasts ____________________________________________________ 208
Sexuality ____________________________________________________________ 219
IThe quest for normality ________________________________________________ 228
Expectations _________________________________________________________ 236
The experience of reconstructed breasts ___________________________________ 244
Chapter summary ________________________________________________ 252
Chapter 7 Living with a new normal part 2: Intersubjectivity ___________ 255
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Introduction _____________________________________________________ 255
Biographical Disruption and Motherhood __________________________________ 257
Domestic roles _______________________________________________________ 265
Emotional support ____________________________________________________ 268
Biographical disruption and relationships __________________________________ 273
Self-censorship _______________________________________________________ 279
Visibility _____________________________________________________________ 285
Other women with breast cancer _________________________________________ 289
Identifying with, and offering support to others _____________________________ 294
Problems of assuming everyone’s the same _________________________________ 297
Breast cancer support groups ____________________________________________ 299
Survivor guilt _________________________________________________________ 304
Chapter summary ________________________________________________ 306
Chapter 8: Conclusions and reflections ____________________________ 310
Introduction _____________________________________________________ 310
Conclusion 1: ESBC/DCIS does not always result in biographical disruption. __ 312
Conclusion 2: The end of intensive treatment can also be experienced as
disruptive. ______________________________________________________ 314
Conclusion 3: The post-treatment period can present further challenges to
relationships. ____________________________________________________ 315
Conclusion 4: The experience of ESBC/DCIS presents an opportunity to explore
gendered aspects of biographical disruption. __________________________ 316
Conclusion 5: There are public perceptions of ‘good’ and ‘bad’ reasons for having
breast surgery. ___________________________________________________ 320
Conclusion 6: The centrality of hair loss to the gendered nature of breast cancer
_______________________________________________________________ 321
Conclusion 7: The experiences of women with DCIS merit further investigation.
_______________________________________________________________ 323
Conclusion 8: It can be problematic for women with ESBC/DCIS to share the
same sources of support with women with secondary cancers. ____________ 324
Chapter summary ________________________________________________ 325
Concluding reflection _____________________________________________ 327
References ___________________________________________________ 328
Appendix A Information for Participants ___________________________ 347
Appendix B. __________________________________________________ 349
Appendix C. Pen portraits _______________________________________ 351

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Acknowledgements

First of all, my grateful thanks go to the wonderful women
who so generously shared their stories with me both for the
MA and the PhD studies. This research would not have been
possible without them. I particularly dedicate the thesis to my
friends Susan and Joanne who sadly passed away before the
task was completed, but whose words live on.
I am indebted to the School of Sociology and Social Policy at
the University of Nottingham, for the opportunity to do the
study and for the studentship which provided financial stability
throughout the past three years.
I have been very fortunate to have been supervised by Srila
Roy and Alison Pilnick who have kept me focussed and always
believed in me, even when I doubted myself. I am so very
grateful to you both, and aspire to your standards of
professionalism in which you manage to retain your warmth
and humour. I also thank Stephen Joseph for his support
during the application process and supervision in the early
stages.
Thanks also to the helpful administrative staff, particularly the
wonderfully understanding Alison Haigh.
I have welcomed the intellectual stimulation and emotional
support from the academic staff and the other students who
have shared this journey with me. Special thanks go to my
good friends Warren Pearce and Lenka Pelechova who have
been my constant companions since the MA. Together we
have shared so much including the highs and lows of the
research experience and (lots of) tea.
My heartfelt thanks go to my husband Clive who set me on my
academic career by encouraging me to do my first A‟ level at
the age of 30 and has been my greatest source of support
ever since. As we embarked on our PhDs at the same time it
has been a great blessing to share this experience with him.
Finally, thanks to my sons Robert and Joseph who fill my life
with joy and laughter and keep me focussed on what really
matters.
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Preface

th
June 8 2012
It is quite fitting that I sat down to write this preface five
years to the day that I was told that they had found a cancer
in my left breast and pre-cancer cells (DCIS) in my right
breast. At the time, it was a total shock. It shook the
foundations of my being. Trying to comprehend what I was
being told, I panicked at the thought of leaving my sons who
were just 11 and 9. It couldn’t be right. I was fit and well.
There was no history of breast cancer in my family – my Mum
was still alive aged 78 with no major health problems. It
couldn’t be possible. Obviously I knew I had a lump, that’s
why I had gone to the doctor and then for tests at the hospital,
but I was sure it would be a cyst or something – I had
problems with mastitis when I was breastfeeding. And that
was another thing – breast cancer was supposed to be where
women had no children, or had not breast fed. I had done
both. And I was too young, I was only 44.
What happened to me when I had cancer transformed my life.
All that had seemed solid and permanent in my world
suddenly became unstable and shaky. I clung on to what
mattered to me most and let the rest fall away. The work I
was disillusioned with, the people I knew who drained me to
be with – all got left behind. And one of the things that I clung
to in the wreckage and what kept me afloat was studying.
Being off work was good for allowing me time to recover from
my treatments but studying was my mainstay during the long
periods in between. I took the second module of an MA I was
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working towards with the Open University. I was avoiding
people to make sure I stayed free of infections that would
delay my treatment so I was alone much of the time. But
studying took me to a different place, a cancer-free place. I
kept an on-off journal at the time and I wrote about going to
the postgraduate open day at the University of Nottingham
that the best thing was not talking about cancer at all during
that day. Which seems ironic now that I am here and I talk
about, read about, and write about cancer every single day.
But now it is on my terms.
When I returned to work I took an offer of voluntary
redundancy and came to the University of Nottingham where I
had been granted the fees for an MA in research methods.
After that I was fortunate to be successful in getting a
studentship which enabled me to pursue the current PhD
study.
As part of the MA I conducted a pilot study in which I
interviewed six women who had been treated for breast
cancer. Two participants, who were also my friends, had
secondary breast cancer and have since died. The effect that
their deaths had on myself and the research project is
discussed in the methodology chapter.
Cancer arrived in my life as an intruder and I wanted to get rid
of it as soon as possible. But its shadow remains with me. It
will never go away so I try to get along with it. I find out more
about it. I talk to people who live with cancer as well.
Cancer was not and is not something I would ever say was a
good thing to happen to me. But I am determined to get
something good out of it. I want to use my enthusiasm for
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studying, and the knowledge I have gained through my own
experience, to further the knowledge in this area.
I realise that not everyone has the same blessings that I do
and that my experience can never be the same as anyone
else’s but we have walked the same corridors, sat in the same
waiting rooms, smelled the same smells and heard the same
sounds. Perhaps that allows me a different level of
understanding.
There are of course problems with studying something so
close to my personal experience. Just as looking at a close-up
can restrict your view of the bigger picture, there may be
times that I will need to step back to regain a sense of
perspective. Some of the stories that the women tell me are
emotional and painful to tell and to hear but I need to put that
emotion to one side as I consider what is being said
underneath the actual words that are used.
This is my challenge but I owe it to the women who have
shared their stories with me, to do it as well as I can.
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