This wonderful article was published in last September’s Saga magazine. It’s written by the late Sally Gritten. A different cancer but it explains how those of us who live with cancer are so often portrayed as brave, battling and fighting.
Living with cancer, fighting the clichés
By Sally Gritten , Monday 10 September 2012
It’s the diagnosis everyone dreads, and there are probably as many ways of dealing with it as there are sufferers. Here, one woman who has had cancer for years shares a mindset – and the language – that has helped her.
I have been living with cancer in one form or another for eight years now. Perhaps you’ll notice I don’t use the phrase ‘fighting’ cancer or ‘battling’ cancer. For me, the key phrase is ‘living with’. Very early on, I noticed that the usual language about dealing with the disease, both from other patients and the media, involved war metaphors. My doctors and I agreed how unhelpful this language could be.
I have spent a good deal of time around cancer patients over these past few years. I’ve heard some say: ‘I am going to fight this thing’. Other people have told me how ‘brave’ I am. Does that mean the ones who died should have ‘put up a better fight’? Could they have ‘faced down the enemy’? If they died, did that mean the disease ‘won’ and they ‘lost’? Am I surviving because I am a ‘better soldier’ than those who did not? The answer is emphatically no. So I began looking for another language to describe both what was happening to me, and what I could do about it.
In medical terms, here is what happened to me. My cancers reside in my blood. The first, diagnosed in 2004, was a form of myelodysplasia syndrome (MDS) and at the same time I was also found to have chronic lymphocytic lymphoma (CLL). However, although the CLL was seen in my bone marrow, there was no indication that it was active in my body. The plan was to ‘watch and wait’ and start red blood cell transfusions for the MDS. Over the years, the CLL started to become more aggressive, so I began chemotherapy along with my transfusions. In June 2011, I became very ill. It turned out that not only did I have CLL, but also chronic myelomonocytic leukaemia (CMML). The only course of action was a bone-marrow transplant, which took place in October 2011.
Having rejected war metaphors as a way of thinking about coping with cancer, what was left for me? I am not a spiritual or religious person, so those arenas were not viable options for me. I work as a coach and consultant, helping clients to work with chaos and unpredictability in their world and the onset of my cancer gave me the opportunity to draw on that professional knowledge for myself.
Writing this now makes it seem as if I’ve followed a conscious and well-planned path. But of course, it was not like that at all. I’ve felt my way in a totally haphazard fashion and often my professional training has not helped me to live with the terror that accompanies a life-threatening illness. This disease is chaos and unpredictability writ large.
I also had to question my deeply held beliefs about medicine, which suggested the specialist knowledge and training of my doctors would take me from A to B to C – and I would either be cured or die. If only it were that straightforward. Giving up my old view of medicine has helped me hugely in managing my expectations. I found I had fewer questions seeking reassurance and comfort from my doctors. I asked for facts and they gave them to me. Did they know more than they said? Absolutely. Would it have helped me to cope if they had laid out every possible outcome? Almost certainly not. The fact is, for every case they treat, there are many variables. No doctor could have the powers of prediction that would comfort me.
My focus turned to questions about what having cancer meant to me. Intriguingly, the answers keep changing, but the questions have held firm. This self-enquiry gives me a more realistic way of viewing and coping with the hideous world of cancer in which I find myself. I can’t change the facts of my diseases, but I have the power to choose which story I tell myself about them. So, how can I best use this power?
Acceptance
I needed to deal with my emotions, which ranged from despair, through anxiety, to serenity. It is unrealistic to try to be happy all the time. But there are many simple and useful strategies for dealing with feelings we can neither predict nor control. For me, this means acknowledging all feelings – including difficult, sad, terrified ones. For example, ever since my stem-cell transplant, the spectre of my illness has stayed firmly implanted in my brain. Has the cancer really gone away? Will it come back? If so, when? Might I need a second transplant? I hate the fact that these feelings are so dominant in my mind. But rather than engage in doomed attempts not to think about them, I simply try to accept them and move on. I try to make them the background noise rather than the focus of my thoughts. And occasionally these worrying thoughts even slip away.
Mindfulness
Learning about acceptance is very close to mindfulness. For me, mindfulness is trying to stay in the moment without judgment; easy to say, hard to do. Whatever I am feeling at any given moment is not wrong or right, good or bad, helpful or harmful. It just is, and it will pass.
Catastrophic apprehensions overwhelm me; what if I am dying? Will I see my beloved grandchildren turn five, six or seven? How will my husband begin to cope? What should I be doing better or differently to enhance my chances of survival? I’m sure, if you’re in a similar situation, you have your own list. But acknowledging and accepting the feelings, no matter what they are, helps me enormously. Telling yourself not to think about them makes them stronger and more prominent. Acknowledge them in the moment without judging yourself and let them slide to the background, like a CD you were listening to, but then realise you have missed four tracks.
For the most part, people in my life have been extraordinary in their support, good wishes and love. Sometimes, however, they say or do things I find strange, upsetting, unhelpful or totally alien to me. Some people have even disappeared. As I had to learn to shift my expectations of my doctors, so I have also had to change my expectations about other people in my life. Without exception, no one bears me any malice or wishes me ill. But, of course, they are seeing my illness from their own subjective perspective and are trying to make sense of it in their own way. Usually they get it right, though sometimes they get it wrong. I consider it a big part of my job as the patient not to stand in judgment over any of them. I didn’t know I could accept people’s thoughts, comments and actions without judgment, and I am glad to be learning how to do this. It is a real stress-buster.
Breathing
I practise a lot of deep breathing. The science behind this is irrefutable. Deep breathing is the best possible way for your body to deal with stress. I can’t tell you how many times I have been in bed feeling sick and tired from the treatments, the stress, the worry and the pain. Using deep breathing brought me a calm that no medications could provide. It isn’t mystical, it’s science.
I am now post-transplant and unfortunately my prognosis is not good. Life is very mixed, with good days and bad days, opportunistic infections, unexpected admissions to hospital, masses of drugs and trying to maintain my physical strength, which was hugely depleted by long-term use of steroids. Being unable to return to work has resulted in additional financial worries. But, even in this more serious condition, these strategies feel more pertinent than ever.
I am not sharing this as a blueprint or a signpost. I am simply offering an alternative to the metaphors of war for people who are experiencing serious illness, replacing the stark dualities of ‘win/lose’, ‘right/wrong’ and ‘good/bad’ with language that is open and allows for more nuance. It may not work for everyone; we all find our own ways. These are mine.
Sadly, Sally Gritten died on September 24. She will be sorely missed by her husband David, her family and all who knew her. She wanted her article to stay online to help readers cope with major illness and find new and better ways of dealing with the difficulties facing them. Indeed, she had been consoled that so many people had contacted her to thank her for her down-to-earth and realistic advice.
This article was first published in the September 2012 issue of Saga Magazine.