Living with the Long-Term Effects of Cancer

Acknowledging Trauma and other Emotional Challenges

Cordelia Galgut, Louise Bourgeois

• Publisher: Jessica Kingsley Publishers
• Year: 2020
• Print ISBN: 9781785924620
• eBook ISBN: 9781784508395
• Topic: Medicine
• Subtopic: Diseases & Allergies

Challenging a number of myths about living long term with or after cancer, this book offers new insights by delving into areas that are not usually spoken about.

Written from a dual perspective- that of a psychologist who had breast cancer and who copes with the long-term effects of treatment - the book contests the assumption that the afflicted person will simply 'get better' or 'move through' to a better situation. Emotional and physical side-effects can worsen over time and people living beyond or with cancer often endure a mismatch between expectations and reality, because they have been told that life would be easier than it actually is. This can leave both those suffering longer term and those close to them confused and unprepared.

Including testimonies with people who have had a cancer diagnosis and people in the medical profession, the book signposts ways that professionals may help and offers prompts for friends and relatives to have useful and open conversations with the person affected. It gives voice to many people who feel that their suffering is disputed and diminished by the prevailing narrative around recovery.

Galgut includes discussion on relationships, work, trauma, fear of recurrence and the role of therapy. Giving an unflinchingly honest perspective, Living with the Long-Term Effects of Cancer sheds light on these struggles, in the belief that bringing this conversation to the forefront is key to improving life for those who are affected by cancer and who suffer longer term from its effects.

CHAPTER 1

WHY IS THIS BOOK NEEDED?

Nobody seems to accept that I’m struggling like this so long after my cancer treatment. I need help, but nobody understands. They expect me to be back to normal, but how can I be? (Suky, diagnosed with bowel cancer five years ago)

‘You should be grateful to be alive’

The mismatch

Despite growing and compelling evidence to the contrary, some of which has been available to the public for several years now; for example, Macmillan Cancer Support’s report, Cured – But at What Cost? (2013a), there seems to be little acceptance in the world at large, including within healthcare, that large numbers of those of us who live beyond either a primary or secondary diagnosis routinely suffer a variety of nasty, long-term side effects, both emotional and physical.

Contrary to received wisdom on the subject, these side effects can also worsen over time, not get better. In addition to suffering in ways that quite often seriously affect people’s quality of life, anyone living beyond, or with, cancer, also has to endure a huge mismatch between their lived reality of life after diagnosis/es and treatment/s and how others, and indeed they themselves, have been told life would be.

Furthermore, the ‘you’re lucky you’re alive’ school of thought that those who live on are often enough bombarded by – al-though understandable; for example, in the face of people losing loved ones to cancer – is an immense source of extra stress for anyone struggling after cancer diagnosis and treatment. Such judgements ring in our ears as we limp through, emotionally and physically, often suffering in silence lest we are also told we are, for example, ‘exaggerating’ or ‘responding abnormally’.

Myth: You get over cancer

As someone diagnosed with breast cancer twice in 2004, aged 48/49, I was told repeatedly that I should expect to be back to normal a year or so after my surgeries and initial treatments. It was, therefore, an enormous shock to me that I didn’t return to normal, either psychologically or physically. Indeed, the four years of adjuvant chemotherapy I had (after the three months of daily radiotherapy), starting a few months after my initial treatment, were totally miserable ones.

‘Am I losing it?’

I remember thinking, ‘Am I going mad because I’m being told that the way I feel is not normal?’ I even remember being told I was over-reacting by a doctor to whom I was explaining that I was frightened of recurrence! In the midst of this, I was also told by another doctor that they would much rather have cancer than chronic fatigue syndrome (CFS). This was based on a belief that you recover from cancer and get back to your normal, active self, whereas with CFS – which as I know from personal experience is an awful condition – you do not. While I wouldn’t question this doctor’s assumption about CFS, I did and still would maintain that for many of us, cancer is not a diagnosis we can ever ‘get over’.

There are many reasons for this, which I will touch on in this chapter and expand on in later chapters, using others’ words as well as my own. Broadly speaking, my assertion is that it is fairly impossible to ‘get over’ cancer when, for most of us, we know it can return at any point. Furthermore, contrary to what many would expect, it is a rare person who has had a cancer diagnosis who doesn’t endure longer-term effects of some sort, both physical and emotional (Crompton 2018; Macmillan Cancer Support 2017). And as I mentioned earlier, these physical and emotional effects are, inevitably, inseparably intertwined.

I was particularly struck by this doctor’s assuredness that they were right, comparing CFS and cancer in the way they did. I remember saying to them that I wasn’t so sure that there was as much of a difference as they were asserting. This was because there was more than a dawning awareness in me that some of the effects from, for example, radiotherapy and surgery, and maybe even the cancer itself, that I had been told would get better over time, were, in fact, doing the reverse.

I wasn’t alone, after all

When I started to write about my observations that things were getting worse for me, both emotionally and physically, and started to have this writing published, I was relieved to find that I was not alone experiencing what I was in relation to the longer-term effects. I particularly remember writing a piece for Breast Cancer Care News in 2007 (Galgut 2007a) about four years after the end of my last radiotherapy, and being somewhat unsure how either those who had had a diagnosis of breast cancer or my healthcare profession colleagues would respond. This was because I risked going out on a limb, saying that, contrary to what my training in psychology had taught me, in relation to life post trauma, I wasn’t responding as I was supposed to. Instead, I was still living on a knife’s edge, terrified of recurrence, even though I had early stage breast cancer and my prognosis was very good.

‘It’s only you who feels like this’

I was also trepidatious because no medical person or anyone else involved in cancer care was saying anything other than that I should expect the reverse of what I was actually experiencing. Indeed, I was being told by them that my ongoing anxiety was excessive and that my reactions, both emotional and physical, were unusual. I just assumed that I must be a rare case, on some level, not helped by my training in psychology and counselling, which had tended to support the ‘you should be over major trauma in a year’ school of thought.

However, the response to my piece in Breast Cancer Care News was overwhelming, with many women writing to me to tell me how relieved they were that a psychologist, who also knew what breast cancer was like first hand, was echoing how they felt, and what a relief it was that they were ‘normal’. So they, like me, had been feeling that they were the only ones feeling as they did. Very movingly, a few women told me that hearing that it was normal to feel as they did had even alleviated their suicidal feelings.

Quite a number of women also urged me to keep speaking out on their behalf, because, much as they wanted to, they didn’t dare to for fear of being labelled ‘mad’ and/or ‘abnormal’. They also worried that speaking out would compromise their care, as it might affect how their doctors and nurses behaved towards them if they found out what they really thought.

This was a turning point for me, as I started to assimilate, on a deeper level, how this tendency of the medical profession and other healthcare colleagues to label anxious patients ‘abnormal’ when they are just exhibiting normal human, emotional responses can be unhelpful psychologically. What I mean by this is health professionals and others saying, ‘It’s only you’ rather than ‘I know you’re not alone, experiencing what you are.’

People with other cancers often feel likewise

Since then, I have spoken to many others putting up with longer-term effects across a number of different cancers. I have found much common ground, even though treatments for different cancers vary. The views that those affected hold are often similar, confirming this mismatch between how we are supposed to feel after cancer and how life actually is.

And the effects of this mismatch on those suffering the long-term effects of cancer can be emotionally devastating, sometimes even more so than the physical effects they endure. Therefore, this mismatch must be challenged now more than ever before, as more and more people live years beyond diagnosis, with or without recurrence.

Why this mismatch exists also needs investigating, and what can be done about it explored – hence the need for this book.

Truth: The effects of cancer endure

When I started to have the courage of my convictions and began to speak out more, within healthcare circles I found that healthcare professional colleagues could be defensive. They also tended to get impatient with me when I spoke from my dual perspective, as both a psychologist and as a woman who had been diagnosed with two breast cancers. On one occasion, after I had given a talk from this dual perspective, I was confronted by a colleague who told me that I couldn’t be both psychologist and patient at the same time; that I should speak as either one or the other. When I asked why not, I was told that when I spoke from my patient perspective, I was lessening the impact of my argument, because I couldn’t be objective. My reaction was to say that I didn’t think we could ever be objective, from any perspective, but that comment fell on deaf ears.

I was also told that people felt criticised when I spoke from my patient perspective. I tried to explain that I was not criticising anyone but that having supported women with breast cancer prior to having it myself and thinking I was doing a good enough job, I was shocked to find that I had made some seriously inaccurate assumptions. No doubt the people I was supporting had indeed realised but were too polite to tell me. I said I felt it was my duty to speak out about what I had learned from being in the patient’s shoes, and hoped people would be interested in my new insights. Unfortunately, the response I got was that I was over-reacting.

Sadly, this kind of attitude remains quite prevalent within healthcare, and it is one that needs constant challenging in order to improve patient care across the board. I do understand this stance in that it is, in part at least, a form of self-protection. I think it is also more insidious in origin, as it is part of a medical model, paternalistic attitude to patients, that most of the people I know in healthcare would now consider outmoded, unsavoury and entirely unnecessary.

Certainty breeds inaccuracy

‘You’re over-anxious. It’s not normal. You should be over cancer by now and getting on with your life’

Received wisdom about how life should be after a cancer diagnosis can be a real force to contend with. As an example of this, I remember clearly that when my first book, which I had written from my dual perspective, The Psychological Impact of Breast Cancer, came out in 2010 (Galgut 2010), six years after my first diagnosis, a critic suggested that I was abnormal for still suffering, both emotionally and physically, so long after diagnosis, despite the fact that there were many examples in the book of others who felt as I did. The critic was someone who had not had breast cancer herself, as far as I was aware, although she was professing to be an authority on the psychological effects of breast cancer. I remember being very struck and somewhat shocked by how clear she was that her views were the right ones and that mine were ridiculous, and also by her entrenched, closed stance.

A force to contend with

This critic’s extremely negative judgement was a baptism of fire for me and a good lesson in what I was up against, challenging the cancer establishment in the way I was. I knew the critic was not alone in her views about how life should be after ca...

Table of contents

• Cover
• Title Page
• Contents
• Introduction
• Chapter 1. Why Is this Book Needed?
• Chapter 2. Why Do We Struggle to Accept that Long-Term Effects Exist?
• Chapter 3. Dread of Getting More Cancer
• Chapter 4. More Long-Term Effects, Physical and Emotional
• Chapter 5. Relationships and Cancer
• Chapter 6. Work and Cancer
• Chapter 7. Interviews with a Nurse and Three Doctors
• Chapter 8. If Only: The Experience after Treatment for Male Cancers
• Chapter 9. The Way Forward
• Appendix
• Glossary
• References
• Resources
• Index
• Join Our Mailing List
• Acknowledgements
• Copyright
• Of Related Interest