Tagged: NHL

On not having cancer

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On certain afternoons I am certain it has come back. A twinge in my right side, where the pain started more than ten years ago; the same pain mirrored on my left side, where there was nothing; soreness in my pelvis and in my hips, a ghost of the ‘big bone pain’ brought on by the drugs I had to self-inject (I had to get my wife to do it) in order to mobilise my blood count. It doesn’t take much. I woke the other night covered in sweat, and practically rang the ward there and then. Of course, it was nothing. It was probably the wine.

The most significant word in the previous paragraph is that tiny yet monumental ‘ten’. For anyone who has had cancer of any kind, ten years free from the disease represents the end, that victory is yours, the classic notation of which is that you have ‘beaten’ it. I have got to the stage where I am beginning to find boring the necessity of still having to point out inefficacy of such a metaphor. But, in case you have missed me saying it elsewhere, here are the reasons. First, treatment for cancer, in its usual combinations of surgery, chemotherapy and radiotherapy, is very much having the battle done to you, not the other way around. I was treated with the latter two, what my ward doctor liked to call the double-whammy (he had had Hodgkin’s lymphoma on and off since he was 16, so was allowed a little licence), rather than that unholy trinity. I have written two whole books about it, and I still can’t describe it. Second, the notion of a ‘battle’ places the responsibility of getting better upon the patient. This opens up the possibility that it is the ‘strong’ or ‘deserving’ patients who survive having cancer, and that those who die from it are somehow lacking in moral fibre. This is dangerous. (I sometimes wonder if it is not unlike a bizarre mutation of the Protestant work ethic, itself a mutation of the notion of the idea of ‘deserving’ to be ‘saved’.) Third, the idea of cancer as a ‘battle’ unnecessarily romanticises cancer as a disease when there is nothing romantic about it. Consider the phrase ‘after a short/long battle with cancer’ used in headlines when a (usually famous) person dies from the disease. Even though the ‘battle’ has been lost we persist in reassuring ourselves that the deceased has ‘given it everything’. Like so much that is said about cancer by people who have not had it, it is uttered more to reassure the speaker than those having treatment for the disease.

The popular myth about receiving news of remission is that you go home and reach for that bottle of Champagne you have been keeping at the back of the fridge for emergency celebrations. Let me tell you, it was not like that for me. Before she died I spoke with my friend Mary of the popular image of cancer patients ‘breasting the finishing tape’ at the end of a long race. For all the undoubted good intentions of campaigns such as the Race for Life, never was a metaphor more loaded, or, in Mary’s case, ironic. To say we found it inaccurate is an understatement.

For me remission was more like collapsing in a heap, or into a cave. Some of the darkest days I experienced with cancer (I will not say ‘battle’) came not after my original diagnosis or during the rigours of the double whammy, but in the aftermath of being told I was better. I think it is fair to say that this is not commonly anticipated by one’s friends and loved ones. Just as I shall not forget the uncomprehending looks of dismay on people’s faces when I told them I had cancer, neither shall I forget the same when I told them all I wanted to do now I was well was curl up under my duvet.

I think I am one of the lucky ones, in that I was directed to a specialist post-cancer counsellor, and that my family and friends were patient and kind to me as I tried to piece myself back together. The odd thing about remission is that the person who handles those fragments is not the same person who witnessed them being broken. I have heard stories of cancer patients who ‘just get on’ with their previous lives as though nothing has happened to them (and I wish them well). This was not a course I felt I could take. It is long and arduous work, secretive, non-linear and iterative. Every time I felt I had come to understand what I had been through I would find myself crying in the supermarket the next day, or at a song on the radio, wiping away tears as I made pasta for my children, explaining it as ‘nothing’.

The truth is, ten years from my diagnosis, but not quite from my remission, I am only now and very tentatively coming to terms with my experience of cancer. For one thing I have become hyper sensitised to the weight of duty in other people’s voices when they ask me how I am, especially if I have not seen them for a while. I can almost smell their anxiety that I might just answer them honestly. Oddly, I am also aware of my own superstitious and unreconstructed views towards cancer, as though by having had it I have somehow protected my family, friends and colleagues from having it. Just as my getting ill protected nobody, my getting better has saved no one either.

In the early days of my recovery I would shuffle round to my friend Lawrence Sail’s house where we would sip coffee and eat ginger nut biscuits. ‘It’s a very loaded word, remission, isn’t it?’ he said. ‘It literally means ‘sending back’.’ I began to appreciate the horror of what had happened to me in those moments, including how draining I found the effort of engaging with the places and people, including me, that I had been sent back to: family, of course; work; friends; and, not least, writing and reading, especially the latter. On the afternoons when I find myself rubbing my lower right side, or when I wake up drenched in sweat, nothing is more real or absolute. If I am lucky I will begin another paragraph (it never seems to return when I am teaching), or roll over and sleep instantaneously. If I am not, I may begin to obsess about it, a kind of thinking that is not really thinking at all but more a wired, emotional response that is far from remembering who and where I am, and even further from breath. My counsellor called it ‘spiralling’. Sometimes it lasts for days, though, these days, that is becoming rare. Instead I try to practice the other word my counsellor taught me, to have ‘acceptance’ an abstract word that only makes sense if it becomes a repetitive action. Yes, I say, cancer happened to me. I would rather it had not, but it did. I say thank you, and thank you, God. For the robin outside my window. For my children. For this coffee, and the voice in the other room which has just asked if she could have some, too. Which reminds me, there is living to do, and a life to commit to, each day.

 

Riddance

Love for Now