Get lucky

I’ve just returned from the European meeting of Childhood Cancer International, which this year was held in Malmo, just over the crossing from Copenhagen, the location for the Danish noir thriller, ‘The Bridge.’ CCI is always a heartening experience, a kind of bridge itself for a remarkable set of activists from across the Continent, all the way from from Scandinavia down to the Balkans and beyond. The meeting  was of exactly a hundred people (if you include Sebastian, the baby brought by his mother in a pram) and was made up of parents, carers,  a few professionals and, as  always, a significant number of former patients, usually referred to as the 'survivors’ group. '

It was therefore interesting to hear from a Greek survivor, Aimilia Tsirou, who in her presentation explained that they don’t actually like being called  ‘survivors,’ but that nobody has been able to come up with a better term. This prompted me to make an off-the-cuff remark about the words we use for cancer, something which resulted in more excitement from delegates than the painstakingly prepared PowerPoint  I delivered the following day.

My passing thought was on how cancer tends to be described in the language of warfare. If someone recovers, we say they have ‘beaten cancer.’ If they don't, the  obituary relates how so-and-so has finally ‘lost their battle against cancer.’  These are only words, of course, but my problem is that they affect the way we think about ourselves and that there is an implication here that if a child relapses, it is because they have in some way failed.  

We still know surprisingly little about why a child gets cancer but one thing we know for certain is that it is never the result of something that they did. ‘Attitude’ can, of course, have great significance in health. It can affect how a child settles back into normal life, on the limits they allow disability to place upon them, on the skills they develop, physical, mental or interpersonal. But let’s get real, nobody, whether an adult or a child, ever willed away a tumour.

The broadcaster, Jenni Murray, who developed breast cancer in middle life described her remission this way.

‘Dealing with cancer has nothing to do with battling or fighting or positive thinking. I was fortunate. I had a relatively early-stage hormone receptor breast cancer. It hadn't spread. It's probably the best researched form of the disease. I gritted my teeth, put my trust in my oncologist, tried not to get too depressed about surgery and chemotherapy and, six years on, I'm still here.’

I do not think Murray would object to her words being paraphrased like this:  she wasn’t brave, she was just lucky.

 Anyone who has spent any time around young people with a terminal condition will know that although many things may be in short supply in those final months, new  treatments for example, that courage is not one of them.  So can I suggest that we ditch the gung-ho language, stop calling sick kids ‘warriors’ and accept that cancer exists not so much on a battlefield but in an enormous  genetic casino. And that it is the job of you and me to work to even up the odds.

Thank you to Jean Claude Dupont who passed on to me this learned and lengthy article about the language used to describe cancer in the popular press.

Thanks also to Maggie Wilcox for the link to this page on metaphor, which took me to this poem.