Weblog Commenting and Trackback by HaloScan.com rockpool in the kitchen: More life stories. BRCA1 -

Saturday, September 03, 2005

More life stories. BRCA1 -

Don’t let’s maintain the suspense. Granny’s family’s breast cancer is genetic – they found a mutation on the BRCA1 gene – in an unusual place, hence the eighteen months spent tracking it down. Her sister was tested in Australia with the same result. Dire news? Yes of course. Also no. There’s a lot to be said for being medically interesting; ‘no waiting lists for us,’ as someone said. The entire family is watched closely, tested at regular intervals and hauled in at the drop of the hats which drop at all too regular intervals. Granny assesses there has been a scare every two years or so. Most are minor some are not. All the members of her generation are effected, not excluding her brother. His daughter, the only member of the next generation down to be tested for the gene came out negative; thank god. The status of the rest is unknown. In the generation below that 3 little girls - Granny’s grandchildren – may still be at risk. By the time they grow up there should be a drug to mimic the protein that stops cells proliferating in unaffected people – it is truncated in those who inherit the mutation. Better still they should be able to have babies via IVF; only mutation free eggs selected. This would wipe out the defect in a single generation. How she hopes. Still more she hopes for the cell-checking drug to be in time for Beloved Daughter too; and for 3 beloved nieces. She hopes. She hopes.

Should she apologise for stating all this so baldly? Maybe. But she won’t. She has no desire to add to the recent flood of agonised ‘human stories’, so-called. (But what else are they - animal tales? Why not? We are animals. Only this week they told us we are more than 99% similar genetically to chimpanzees, if much more prone to damaging mutations.) Headlines like ‘Our family tragedy’- ‘My/Our struggle with cancer’ shriek from the front covers of women’s magazines, up and down-market alike ‘. Much of them relate to families that suffer worse than Granny’s. She’s written about her mother’s and her twin sister’s dying elsewhere, fictionally in the first case, factually in the second. That’s enough. There’s always the danger – as in writing about any cancer – that it develops a ghastly kind of glamour, like tuberculosis in the nineteenth century; turning us all into ‘Dames aux Camellias for our time.’ ‘Emotional pornography’ it has been called, not unfairly. Think ‘Love Story’ if you want the worst fictional example. Yuk.

Which is not to say writing can’t be helpful, even illuminating when it’s well-done, without sentiment or self-pity. Many of us remember what that brave grump Ruth Picardy had to say. No poor little me there. More plain 'SOD IT'. And Dina Rabinovich has been writing well in the Guardian over the past few months. She too is funny and direct. This helps.
As Granny discovered many years ago there is a huge cancer subculture humming away, unknown to all those who have no need of it. Discussion groups, counsellors, psychotherapists, aromatherapists, astrologers, therapists of every stripe and colour, some of them quite barmy and many of them expensive – and often based in the US or Mexico. Some of it has its uses. She used it. She learned relaxation and meditation exercises from a support group – and, singly, from a wonderful woman, a Tibetan Buddhist, who subsequently died of cancer herself. She uses these exercises to this day. She did not stay in the support group long. She became aware how, for many of its members, having cancer – fighting it- had become their whole reason for existence. One woman burned her kitchen out in a domestic fire then used the insurance money – a large sum - to get her hair and fingernails tested in the US – really – rather than restoring her kitchen; it remained charred and unusable after three years. Enough is enough, Granny thought. And thinks.

“If someone told you you didn’t have cancer after all, what would you feel?’ the Tibetan Buddhist asked Granny. The sinking feeling she had – what drama was left without it? - warned her just how easy it was to fall into the same trap. As soon as she’d got the hang of the relaxation exercise taught there, she ceased to attend her group, comforting as it was.

Presumably the subculture is going strong; even though the cancer hospitals have adopted some of the more benign alternative therapies. Counselling, aromatherapy and relaxation exercises are on offer all over. During the genetic consultations, Granny found ‘Nurse Counsellors’ popping up round every corner; she appreciated this mostly, though she does have the impression they can add to the alarm. ‘Honesty’ is everything these days; no more prevarication. At times Granny would prefer to put her mind elsewhere; ‘sufficient unto the day’ and so on. But that’s her.

The thing is; it is not nice, not nice at all being prey to such a disease – especially when the remedies for it are so unpleasant; burning, poisoning, mutilation; take your pick. Granny suspects that in 50, even 20 years time they will be looked back on as barbaric. It is bad going through them: almost as bad – in some ways worse - watching your beloveds go through them. It’s worse fearing they will die, worse still watching them do so, watching them turn into other people in the meantime if given no help. Granny’s mother was dying during the Cuba crisis. Granny only realised just how far away her mother had gone from her, from her whole family - previously her whole life - when she could not arouse in her one flicker of interest as to the outcome; the fate of all of us. Granny’s younger sister says; ‘I wasn’t mothered from the moment mum became ill.’ She was thirteen at the time. It’s one reason she’s grown up to be tough. Another motherless child in Granny’s family. As we all were really in some respects. It would have been good to have our mother around when our babies were born, not least. You are not as grown-up, you discover then, as you think.

On the other hand: let’s be quite clear BRCA1 – defective genes – cancer itself – is/are not life. Real life goes on all round you every day no matter what. Years after her mother died, a kind friend, an artist who ran classes in a cancer hospital took Granny as an assistant for a few weeks. As therapy, she said. It was too. Granny discovered that even the terminal cases she met were not simply people who were dying; much more significantly they were living still. Not only pain relief, but depression relief helps them do that. Granny’s mother got the first. She didn’t get the second, ever. She lived three sad and frightened years: awful; no, worse: terrible.

But everyone has to die sometime. Fifty? Seventy? Eighty? So what. It’s all short enough. Sometimes, as the next ninepin totters, threatens to fall Granny says to herself: it could be much worse; we could have inherited the gene for Huntingdon’s Chorea. (For which there is no cure. Imagine that.) In the meantime you have to live and live and keep living. Wasting your life in fear is simply – A WASTE.

But she still worries for Beloved Daughter and the rest of them. And these days, a bit, for herself. How can she not?

In New Orleans the US – Bush – displays all its failures; forget bad genes; think poor and black, In Iraq they are burying other poor people crushed on a bridge. She is spending the weekend in rural Leicestershire with dear oldest friend, looking out as she writes on a garden full of sun, roses, sweet peas, an enormous walnut tree. On Monday she will go to her island for a while. She will write more when she can. She has a lot to tell. Rather wishes she didn't.

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