‘You should be over cancer by now’

Before being diagnosed twice with cancer 16 years ago, I had emotionally supported clients with cancer – from diagnosis, through to life beyond the initial diagnosis and treatments. I believed that I was understanding them well enough and offering them appropriate support. How wrong I was.

I found this out to my cost when I started experiencing for myself the seemingly never-ending treatments and psychological impact of cancer. All this came as a shock to me, not least because my training in psychology, counselling and psychotherapy had led me to believe that life after a huge trauma such as cancer should be on the way to a resolution after a year or so. Progress through the various stages of the trauma models should, I thought, be largely linear and relatively smooth. Physical and emotional distress certainly shouldn't be worsening over time. 

In my case, nothing was going smoothly. The 'psychologist me' began to worry that I was 'losing it'. I searched high and low, including in the psycho-oncology literature, looking for non-pathologising words of comfort. There was literally nothing I could find that offered reassurance that I was reacting normally as someone still in shock three years after diagnosis, still terrified of recurrence and still in a lot of physical pain. The list of my ongoing problems was endless.  

'You're far too anxious'

My lack of confidence suffered further knocks when I saw doctors and nurses at follow-up appointments, all of whom apparently considered me over-anxious and abnormal for not being 'over' cancer at this point.  

After the surgeries and radiotherapies, I was put on an adjuvant chemotherapy drug that had to be injected into the subcutaneous fat of my abdomen with a nappy pin sized needle on a monthly basis. The injection site often bruised hugely, which used to upset me as well as cause me pain. This treatment lasted four years, a constant monthly reminder that I had had cancer. These are common treatments, so I was not alone in suffering both physically and psychologically several years after diagnosis. Yet my doctor thought it ridiculous that I was still feeling so anxious and upset. On one occasion he told me I was over-anxious, and should get on with my life and think myself lucky. Of course, like many others, I do consider myself lucky that I am still alive. Yet sadly, the quality of my life was not good then, worse now and there are plenty of days on which my life doesn't feel worth living. 

After the first phase of treatments had ended, I stopped having easy exposure to many others in the same boat as me. At that point, 'conventional wisdom' about how life was supposed to be after the initial treatments for cancer were finished, started to dominate my thinking and became even more psychologically disruptive. It wasn't until I started to speak out and write about this mismatch – between what I was actually living and what others expected of me – that I started to internalise more that I was not alone. 

As a psychologist, I was worried I'd be deemed psychologically unfit to work if I spoke out more about what I was experiencing; that I'd be deemed unbalanced, or worse. So I approached the writing of a short piece for a cancer charity magazine in 2007 with great trepidation. I felt compelled to speak out to try to clarify these misconceptions about how having cancer was, but I thought I could be ridiculed for it. 

Much to my relief and amazement, I got an overwhelming set of responses from readers relieved that a psychologist who had had breast cancer was saying she wasn't 'over it', and was still suffering a myriad of health issues, seemingly related to the treatments. Some spoke movingly about how my normalising of their thoughts, feelings and experiences had lessened their despair, even to the extent of pulling them back from the brink of suicide. People urged me to speak out for them because they didn't dare to, in case others deemed them mad, and/or it affected their treatments. That was a turning point for me, giving me the courage to keep speaking out.

The validity of the dual perspective

The belief that it is just a minority who already have pre-existing mental health issues that don't 'move on' after cancer continues to be a hard nut to crack; not because it holds much water, rather because it is such an entrenched belief. It is still widely held in healthcare in relation to the psychological care of people after any major trauma, not just cancer. 

I remember the reviewer who criticised my first book on the psychological impact of cancer using the argument that I had pre-existing mental health issues that had got in the way of me 'getting over' my diagnoses. The major issue she mentioned was that I had referred to lying bare-breasted on the radiotherapy table, submitting to doses of radiation, day after day for weeks, and I had written about how that eventually stirred up memories of being sexually assaulted and abused. I remember feeling very pathologised by that comment. It made me question what I had believed was a pretty reasonable psychological response to the situation I was in. When I started to talk to others about how they felt on the radiotherapy table, I was again overwhelmed by others telling me they felt the same.

I have also been criticised for speaking from my dual perspective as psychologist and woman who had had breast cancer. When I speak from my patient perspective, I am usually deemed to have no psychological insights worth taking seriously, even though it is known in those situations that I am psychologically trained and experienced. And when I speak as the psychologist, my patient voice can very easily get lost. It continues to amaze me that, despite the fact that there is some great work going on in the 'living with and beyond cancer' field, there are still significant numbers of colleagues within healthcare who reject the validity of the dual perspective. 

Getting worse?

Over the years, I have met with so much resistance when raising the possibility, within healthcare and elsewhere, that some of my physical problems since cancer surgeries and treatments have actually worsened over time. It's very hard to have conviction in the face of continual opposition and ridicule. It takes great inner strength and self-belief, and I don't always have either. 

It has also been a real shock to realise I am indeed more scared. I've been trained to believe it would be nigh on impossible to feel more scared so many years after a major trauma. Yet most cancers can recur at any point. The further you get from the initial diagnosis, if you are lucky enough to be free of cancer, the more many of us have invested in living on and not having to have more treatments.  

Again, when I started to talk to others, I began to realise that I was not alone. Sometimes, it has taken people a while to dare to have these conversations with me; they run counter to what anyone is told to expect or what is deemed a 'normal' and 'reasonable' response to cancer. Those same people have said they wouldn't have admitted how they really felt to anyone other than someone who had had cancer and similar long-term problems. If I had to choose only one message it would be that: so many people have written to tell me that validating their long-term effects, physical and emotional, gives them huge psychological reassurance. This alone can literally save the lives of those feeling desperate, alone, judged.

A contentious issue

After so many years of dealing with cancer's unexpected long-term effects, and encountering so much entrenched thinking, I realised that I had to write another book. It wasn't a job I relished… I knew, for example, that writing a chapter on dread of recurrence would trigger me. I also knew that in my mid-sixties and not in good health, I was setting myself up for more criticism.  

I also knew I would have to find a lot of people who would talk to me for the book, and that would be hard. Indeed it was. It is such a contentious area that I had to meet people clandestinely to interview them, and was asked not to leave paper trails, no email contact etc. Yes, incredible, but true! Why so contentious?  I'm not entirely sure, but the greatest fear I encountered came from within medicine. Could it be the fear of the consequences of whistleblowing about, for example, the real but usually unspoken about side effects of some treatments for cancer? That's not the whole story though, because this same fear exists outside medicine, too. 

However, my book on long term effects has been out for several months and I know it is both helping and educating, so that is gratifying. I still have my critics, and there is a tendency to relegate me to the 'loopy fringe' of psychology, rather than to hear what I am saying on behalf of the many hundreds I have spoken with over the last 16 years. Not everyone who has/has had cancer agrees with me. Not everyone is ready to admit certain things, or even to consciously realise them. Those of us in psychology need to be sensitive to that possibility as well. The more we encourage people to speak without fear of judgement, the more they will feel able to.

Why so much resistance?

Not everyone working in healthcare denies that long-term problems exist; indeed, there are colleagues who are working hard to raise the profile of those living with and beyond cancer. However, damaging beliefs do exist… 

You should be grateful: This opinion is prevalent and pervasive, both within healthcare and outside it, and often makes those living with and beyond cancer very miserable. It's understandable that grief-stricken people feel like this when a loved one dies of cancer, but such sentiments readily trip off the tongue of people who have not lost a loved one to cancer too. I think it is largely borne of a conviction that people should stay silent about any problems they encounter post diagnosis, out of respect for those who have lost their lives. However, I have lost loved ones to cancer myself, yet I would say that it is valid to feel furious, grieve, be respectful and still speak out. And I have certainly been told by people who very sadly have subsequently lost their lives to cancer, that they wanted me to speak out for them after their deaths, as a way of honouring them.

Get treated and then you're all right, or you die: People often genuinely don't understand what having cancer is like – how never-ending the treatments often are, and the psychological and physical consequences – any more than I did prior to having it myself. I should have educated myself better, but I didn't because I was too scared of cancer and getting it myself. It's hard to confront something you feel you can't cope with. But I really think you have to if, for example, you are working in cancer care; or admit when you can't. Otherwise the quality of what you want to offer is going to be negatively affected.

In reality, more and more people are surviving cancer or living with a still present/worsened cancer. For, example, there are lots of people living with Stage 4 cancers. Perhaps it is time to redefine cancer, increasingly as a chronic ailment that results more often than we realise in severely eroded quality of life. It makes sense to put time and energy into how to improve that quality of life for the 1 in 2 of us who will get cancer in our lifetime. I'm afraid that quality of life might be so poor, life wouldn't be worth living anyway – no matter what the media portrayals of life after cancer may say. Many of us cannot run those marathons, or feel endlessly positive! And why should we? At the very least, dread of recurrence is pretty universal after cancer.

Life after big traumas should return to near normal after a year or so: Had I not had ways of formulating my thoughts and feelings as a result of my training in psychology, counselling and psychotherapy, plus had years of therapy under my belt, I think I would have gone under. I have pulled myself back from the brink many times because I have been able to work out ways of coping. Even so, I still have very low, depressed times, as human beings do when their backs are against the wall, and quality of life is as bad as mine is.

The way forward

Many more people suffer from very significant long-term effects from cancer than we might imagine. Yet this appears to be the affliction that dares not speak its name. Compare with the recent surge of interest in 'long Covid'. The open way in which we are now talking about Covid's long effects – so similar to many of cancer's long-term effects – sits in sharp contrast to the ease with which we often ignore the latter, deeming them unpalatable. That hits me hard at that moment. There are some clinics that cater for long-term cancer effects, but they are thin on the ground and not well-funded, as far as I am aware. 

There is a big role for us as psychologists to support and bolster people living with and beyond cancer; certainly in the areas of psychology where we routinely directly support people emotionally. I worry that too often such psychological care, to the extent it is available, is given by those who are not adequately psychologically trained. I hope I have convinced some of you that your expertise and input is greatly needed, and would be very welcome, in order to help those living with and after cancer through to better days. More of these people than we might think, more than a minority, sit quietly in the shadows, feeling desperate, powerless, just trying to limp through to a better day. They need help and support.  

-        Cordelia Galgut, CPsychol, FBPsS, HCPC Registered Counselling Psychologist, Registered MBACP Senior Accredited Counsellor/Psychotherapist

www. cordeliagalgut.co.uk [email protected]

-        Living With the Long-term Effects of Cancer is published by Jessica Kingsley Publishers. A 20% discount is available to readers of The Psychologist via  https://uk.jkp.com/ with the code THEPSYCHOLOGIST (valid from now until the end of 2021).  

Box: Please don't, a poem by Cordelia Galgut 

Please don't tell me how I should feel
Or what I should think about having breast cancer;
How I should be 'over it' by now;
How I should be more positive;
How I should be grateful that I'm alive.

And please don't say, 'You're overreacting to your situation,'
'It's only you who feels like this,' or
'It's time you got on with your life.'

How can you know? You have never been in my situation.

And please don't ask me what I have contributed to my cancer
Or tell me how brave I've been.
There was no choice is all.
It was just the luck of the draw.

And please don't ask me how my breast cancer journey has been.
There was no journey
There is no journey, because there is no end in sight.

And for pity's sake, don't say,
'Well, we're all going to die in the end,
I could get run over by a bus tomorrow.'

It's different.
You have never stared death head on.
You have never had breast cancer.
We are on different sides of the track now.

Tell me instead
That you cannot know what it is like living through this hell.

Tell me instead that you have an open heart
And an open mind,
That you'll listen,
That you'll try and understand,
Even when what I'm saying sounds preposterous to you.
It is my reality.

And please, please try and look beyond your own fears,
Or if you can't, tell me so.

Having breast cancer is terrifying
And the terror does not diminish,
Because the fear that it will come back is ever present.

So please, please don't tell me that I'm one of the lucky ones,
That I'll be back to normal soon, 

Because my life and I have been changed forever.