Shattering the myths
Private Practice, June 2020

I wrote my latest book, Living with the long-term effects of cancer: acknowledging trauma and other emotional challenges,¹ published by Jessica Kingsley Publishers in January 2020, because there is so little available in the public domain about the reality of cancer’s effects, particularly longer term. However, having talked over the years to many of those coping with physical and emotional problems, either living with or beyond cancer, I knew this whole area was very problematic. People were suffering in silence, lest they were deemed to be exaggerating and ungrateful they had survived.

Furthermore, having been diagnosed myself with bilateral breast cancer in 2004, I was still fairly incredulous about my own ongoing long-term effects, not least because they were worsening in some ways, contrary to conventional wisdom about how life should be after cancer. For example, my immune function has continued to deteriorate since treatment, rather than improve, as have various inflammatory conditions that also started during my initial treatments for cancer. I knew I had to speak out at length and with as much honesty as I could muster.

It’s a tough subject to engage with

I recognise that the subject of cancer’s long-term effects is not an easy one for most, or probably any of us, to deal with, health professionals or not. It’s so loaded. It’s cancer, so that’s hard enough in itself, but it’s suggesting a version of cancer that doesn’t end with treatment, so it’s extra scary and unpalatable. It’s also almost counterintuitive that cancer is being more and more described as a chronic condition, because it is so associated with inevitable death in our minds.

However, whether we can countenance it or not, there is a growing epidemic of people who survive cancer and live on, either with or without recurrence, but who do so suffering a variety of long-term effects. It’s hard to estimate exact numbers falling into this category, because symptoms are under-reported and the extent of the problem of cancer’s long-term effects is not adequately recognised. However, Macmillan Cancer Support’s report, Cured – but at what cost?,² even seven years ago, in 2013, estimated that one in four people diagnosed, treated for cancer and surviving it, were suffering long-term effects. Now, the numbers would be higher, since more people are surviving cancer in 2020. Of course, estimating numbers is a tricky business and depends on how you define long-term effects. For example, fear of local recurrence or spread is fairly much a universal long-term effect of cancer, but it’s an emotional long-term effect, so tends to get less attention than the physical ones.

Of course, life is life, and it is clearly good news if you survive cancer. Often enough, though, it’s not much of a life. And the numbers suffering like this are being underestimated. As one surgeon, Professor Smith, whom I interviewed for my book, who does recognise the extent of the problem and the issue of people’s quality of life, said, ‘We’re going to get more and more cures, more and more stable cancers, I don’t think we’ve even got a name for it. I don’t think we’ve quite got our heads round it. That’s where cancer is going.’¹

As mental health professionals, we have a vital role to play

Those of us working in mental health can be of so much help to people suffering the long-term effects of cancer, whether we have had cancer or not. Indeed, I know of colleagues who put their heart and soul into supporting those of us with long-term effects, and, in doing so, make a huge difference to those who seek their help. I also know that there are other colleagues who want to help, but don’t necessarily feel confident enough to do so, so I hope that what I write here increases their belief that it is relatively easy to offer valuable support to this client group. For example, what I hear over and over again from ‘sufferers’ is that anything that validates the experience of those coping with these long-term effects will be enormously therapeutically beneficial, because it counters all the negation of these effects, and their impact, in the world at large. Feedback about the book so far certainly seems to be indicating this.

Below, I outline as well as I can in a short article, some of the issues I think we need to consider in order to offer this client group the best support we can; also, some of the background that throws light on what tricky terrain this area is to navigate; all of which will impact on any client with long-term effects.

Knowing something of the complexity of this area, and the myriad of issues involved that contribute to the relative unspeakability of this subject in healthcare and in the world at large, is also vital for any therapist contemplating supporting this group of clients.

Writing this book – potential pitfall

Truth be told, if I hadn’t been asked, and allowed myself to be flattered into agreeing to write this book, I’m not sure I would have. I’d already written enough on the subject to know it was an endlessly complex and potentially distressing topic. Furthermore, it would be bound to stir me up as well, particularly by heightening my already adequately heightened dread of getting more cancer. However, much as immersing myself in this project daunted me, I also knew that it needed to be tackled seriously by someone like me who had had cancer, was suffering its long-term effects, who was a mental health professional themselves, and who was prepared to speak out from their dual perspective, in this very contentious area.

I was therefore somewhat nervous as I started to write the book, my third on cancer’s effects,^3,4 as I have a bit of a track record, and not always a favourable one. I have said some things that have appeared to be challenging over the years, such as that emotional and physical effects often endure for years after the initial treatments for cancer, or never go away, even if you have a good prognosis. As a consequence, I was feeling the weight of the entrenched brigade in healthcare sitting on my shoulder, weighing me down. I could hear my previous critics’ words ringing in my ears as I sat in front of my blank screen. Was I asking for more trouble writing this book? Yes, probably. Some colleagues in healthcare have told me over the years, ‘You’re exaggerating, Cordelia. You’re not doing any one any favours by saying it’s so hard going through cancer. You can’t be objective, anyway, you’ve had cancer. You just need to get over it and move on. And you can’t validly talk from your dual perspective. You have to be either patient or psychologist or you won’t be taken seriously.’

And yet, for me, the only valid way to write this book was from my dual perspective, which I consider more honest and a richer testimony than writing as either patient or psychologist. This whole notion of being objective holds no water for me anyway; everyone has an agenda. The whole reason I started to write about the emotional impact of cancer, some 15 or so years ago, was precisely because, as a therapist, I had supported women with breast cancer, prior to getting it myself, and had thought I was doing a pretty good job of understanding them. I was stunned when I went through diagnosis and treatment twice myself in 2004/5 and realised I had understood diddly squat really and my poor clients at the time had been too polite to highlight my ignorance. For example, I had had no idea at all that cancer treatment goes on and on for most people, which adds to how draining the diagnosis is, or that its effects would continue. I also had no idea just how awful it feels to have cancer or the levels of ignorance I would encounter about its emotional effects.

Another complication

An extra complication has arisen as the years have passed; that of these infernal and interminable long-term effects. It was hard enough to speak openly about the immediate trauma of my diagnoses and surgery back in 2007, but when I started saying, ‘Hang on, I’m three years post my diagnoses and I think the shock is only now starting to kick in’, people were incredulous. ‘You’re over-anxious and it’s not normal,’ they would say. And it wasn’t until I mustered up the courage to start to write about the fact I was feeling like this and speak at length and in depth to other people who had had a cancer diagnosis, that I started to realise that I wasn’t part of a small minority, after all.

In fact, for example, pretty much everyone I spoke to dreaded a recurrence/more spread. And why wouldn’t we? Most cancer can recur, even 30 plus years after the original diagnosis. It’s so psychologically obvious we’d feel like this, but these myths abound. And the myth in relation to fear of recurrence was that this ‘fear’ diminishes over time. People’s reticence about admitting this in public was often just related to a fear of being judged. I’m not saying that everyone is so scared of recurrence, by the way. However, what I am saying is that it seems it is a very small minority who aren’t, not the majority.

So, how in heaven’s name was I going to expand on the shorter pieces I’d written before, on long-term effects, in a way that would support those living with and beyond cancer and not alienate the wide audience I was seeking to address in the book, and make it accessible and engaging enough to draw people in? Every writer’s challenge, I know. An extra challenge perhaps, when you are tackling such an emotive subject. There is a bottomless pit of entrenched positions to address, and many ultimately seriously undermine the reality of life for people living with and beyond cancer. Shattering these myths became my immediate task.

Tricky terrain to negotiate

I knew I wanted to interview people for this book, to include both those suffering and those supporting the suffering, and I also knew, because I had done a lot of formal research, that I would use my researcher expertise to generate the most reliable data possible. I also didn’t want to get too bogged down in it all, an omission I knew might count against me, among those who only take ‘formally’ carried-out research seriously. I like personal testimonies, reproduced exactly as they are given. They are rich and reliable data, as far as I’m concerned. I also knew I’d have to do some formal interviews that I would need to transcribe, particularly with healthcare professionals, who wouldn’t have the time to give me their own written accounts. In the end, I talked to many people for this book, did several interviews that I transcribed, and used a fair number of personal testimonies. A lot of work, but the book needed these, and is much richer for these accounts, I think.

Interestingly, most of the people whose words I used, wanted to remain anonymous, sometimes not even wanting to communicate by email, so I had to deliver their words in paper form and by hand for them to check. Interviews even had to be done clandestinely in a couple of cases. What this seemed to be confirming loudly and clearly for me was, yes, this is a very complex, tricky and contentious area, and people are afraid to speak out, maybe for fear of judgment, retribution or even losing their jobs for whistle blowing. Obviously, people are afraid of speaking out about a lot of things, not just the long-term effects of cancer; nonetheless, the process of generating data for the book ended up generating its own interesting pointers.

Feedback in real time

A fascinating thing is happening as I’m writing this article. I’ve taken to Twitter to publicise the book. I’m no expert at this social media business, but I’ve been getting drawn in more than I expected to and valuing the immediate contact you can have with people. I’ve been particularly interacting with people struggling to varying degrees with long-term effects, both with primary and secondary diagnoses. Responses have been very moving. The book has only been out for three weeks, as I write, but comments from people reading/who have read it, are really gratifying, thanking me for speaking out about how they feel. One woman, Azmina, who had her bowel removed and now lives with an ileostomy bag, has just said, ‘You’re straight to the top of the leaning tower of books I’m so eager to read. If we can all be more open and honest about long-term effects/late effects, those who walk down Cancer Lane next will have more realistic expectations and easier access to help.’ That’s a good bit of advice for us all, I think.

What gets in the way of being honest and open about cancer’s long-term effects?

Below are a few suggestions as to why the long-term effects of cancer remain relatively unknown. If, as therapists, we are prepared to consider these and the other issues I highlight below – and in much greater detail in my book – I would wager that we have a very decent chance of offering worthwhile support to this client group. It’s so easy to feel alone with all the problems of life after cancer. I can easily feel so myself. And being prepared to tentatively raise these issues with clients can be enormously helpful, too. Society mutes them, so your clients might be wary of bringing them up because they are worried you will judge them.

I just didn’t know

Quite a number of people who haven’t had cancer have told me that they genuinely didn’t realise that treatments for cancer go on as long as they usually do, or that they are as horrible and hard to endure as they are; certainly not that the treatments have long-term effects. The reality is that cancer treatments endure, often for years or for life, if your cancer is still present, and they have many side effects that also often endure. For example, hormone treatments can go on for years and years, and those living with a still present cancer have to endure very harsh treatments, for example chemotherapy, for the rest of their lives.

This information is not common knowledge; it’s the unsavoury, very scary version of cancer, so maybe that is some explanation for why this is so. However, I have spoken to a lot of people over the years who have said they wish they had known the reality of possible side effects/ long-term effects, many saying it wouldn’t have put them off treatment per se, they just would have been forewarned and therefore forearmed. As Lou, whom I quote in my book, said, ‘The chemotherapy made me feel pretty awful, tired, drained of all energy, but I was prepared for that and admit it wasn’t as bad as I thought it would be. I was less prepared for how bad the radiotherapy sessions made me feel. After the sessions, I would feel dizzy, my legs would feel as if they wouldn’t hold me up and I felt nauseous. You don’t generally hear that radiotherapy will make you feel ill and feel it should be a breeze.’¹

You’re lucky, you’ve survived; just be thankful

This is a very entrenched and common position that gets in the way of people knowing about the reality of cancer and its long-term effects. I can’t think how many times I have been told this. And, of course, it’s true. I am. And I feel awful that others lose their lives to cancer. However, comments such as, ‘You’re lucky, you’ve survived’ can have a seriously negative impact on a person suffering long-term effects, even to the extent of catapulting them into a suicidal state. It’s so hard to feel thankful in the way we are so often expected to, when we are suffering in the way that many of us are. I know there are many conditions that cause extreme pain and emotional suffering, but the trouble with cancer is that there is such a legacy of terror associated with it in society; it’s embedded in our collective psyche, even though, as I mentioned above, cancer is increasingly described as a chronic condition.

And the negative impact of this horrible track record of cancer gets in the way, by which I mean, it adds to this tendency to dismiss and silence someone coping with its long-term effects. People don’t want to confront cancer’s effects, and I understand why. And yet not doing so means that the suffering of those living with and beyond cancer gets missed. I didn’t want to confront cancer either, prior to having it myself. I failed my clients because I couldn’t. 

Clearly, cancer continues to kill and is an unruly beast that no one really understands and most of us are probably aware of this on some level. Macmillan Cancer Support reports the latest officially published death rate from all cancer (2016) to be over 164,000 people per year.⁵ I do understand why people are frightened and I think others suffering long-term effects would probably prefer a therapist (or anyone else) to be honest about their fears, too. In a way that actually validates what the person suffering long-term effects is going through. It is probably worth also remembering that, according to Macmillan again, 2.5 million people are living with cancer in the UK today, so while every death from cancer is an
absolute tragedy, cancer does need to start to be viewed as more of a chronic problem that people can live a long time with, or beyond, more or less easily.

You should be over it by now

This is a common attitude to anyone continuing to feel extremely traumatised by cancer, or any huge trauma come to that, and it very much gets in the way of people accepting the enduring effects of cancer on an individual. I’m afraid I often enough hear from people that they have felt judged by their therapists in this respect. For example, Resa said about her therapist, to whom she had gone for support with enduring feelings after her cancer, ‘She was really nice, but she just didn’t understand. She couldn’t cope with the idea of breast cancer, either. I could see her fidgeting and looking as though she wanted the session over. She kept telling me to be positive and do relaxation exercises, so I didn’t go back!’¹ It’s hardly surprising, given that conventional wisdom would have us believe that we should be over cancer in a year or so, even, bizarrely, when cancer is still present. Prior to cancer, I thought that myself. Ignorance abounds, inevitably, unless those of us in the situation speak out.

The fact is, though, that with cancer, it’s nigh on impossible to get over it when it can always come back, if it hasn’t already, and when the side effects of treatment endure, and some appear to get worse. This was all a real shock to me, as I said earlier, and ran so counter to all my training in psychology, counselling and psychotherapy. It took me such a long time to even realise that there was a mismatch; something erroneous about the way I had been taught to think about the impact of extreme trauma on an individual and what having cancer was like. My process around assimilating it has taken even longer and I still find I chide myself for exaggerating the difficulties of my situation. I know there are those suffering long term after cancer who negate their own long-term effects, too. In a sense, I really understand why they would, given the above. I understand why someone wouldn’t really want to recognise their own long-term effects because most of us would rather be over cancer, and not engage with the reality of it; plus, it’s a risk speaking out in a world where we mute this side of cancer.

The way forward

I hope I have offered some ways forward in this article that might help you provide relevant support to those with long-term effects who seek therapy. Although I have had to miss out so much, I believe that even taking on a bite-sized portion of what I have written above would potentially be a brilliant help to any client living with and beyond cancer, particularly, as mentioned above, validating your client’s long-term effects.

Overall, I would also say that ‘getting stuck in’ with any client living with or beyond cancer, who is suffering, is of tantamount importance; making it clear you are not emotionally neutral, having an open stance and being transparent, so not making the kinds of mistakes I have referred to above, which I made in the past with my clients in this situation. A task in itself, I know, but great support, if you can manage it.