Saturday, May 21, 2005

The spouses view of a terminal disease

BBC NEWS | UK | Magazine | After Ivan

Ivan Noble died undefeated. His BBC diaries became a book, and now his wife Almut, a cancer researcher, has spoken to the BBC about her experiences:
After Ivan

In Ivan Noble's tumour diaries, published on this site until his death earlier this year, one woman was often mentioned but never identified. As a book of his columns comes out, and a bursary remembering him is launched, his wife Almut has decided it's time to talk...

... One of the things Ivan and I used to talk a lot about was time. In 2002, about two months after Ivan's diagnosis and just after he'd started writing his diary, we heard a psychologist say something very striking. He said people see their lives like an arch - going up and then stretching on some time into the future.

He said that when you face a potentially terminal illness, this whole view into the future breaks off, and people don't know how to deal with that - they're terrified.

That's exactly how we felt, there was no certainty any more. You lose the concept of yourself as a person because you have no idea what's going to happen in a few months or years.

Then you try to live with this uncertainty and really focus on living in the present, on what's happening now. This is tough work, though, because you have to watch what you say and even watch what you think.

Every day, you find you can't just think "We'll do this some time" - if you plan for anything ahead, you have to catch yourself. I would find myself saying things - "maybe in a couple of years we'll do such and such" - and then wishing I hadn't said it. Having to watch your every thought is one of the things that makes it really physically exhausting to live in this way.

You also lose all sense of restraint - you don't see the point. It was very tough but it enabled us to do things we wouldn't have done otherwise.

It was a time of extreme emotions in both directions - it was extremely sad and terrifying, but at times we were extremely happy. I know the past two-and-a-half years were quite exceptional; I also know it wasn't all bad...

... for me the real irony was that it happened at this particular point in our lives; that was the really tough part. We were just at the top of what we'd been hoping for ever. We had found the jobs we always wanted to do. We had just started our family. It was all going wonderfully well and then this happened.

It's dangerous to think about "why?" There are really no causes known for these types of cancer, so there's no point agonising about whether he could have prevented it by doing something differently. At the end of the day it's just bad luck.

Humans probably just have to accept that people get cancer - but I don't think we have to accept that people will die from cancer. We can do something about that - there have been incredible advances in treatment, and a lot of cancers can be cured.

Our bodies are so incredibly complex that you just have to accept that there is a possibility of something going wrong. That's just what it is. Something goes wrong. It's your own body, it's nothing from outside...

Like A Hole In The Head: Living With A Brain Tumour is published by Hodder on 23 May. The BBC's proceeds will go to Medecins Sans Frontieres UK, the charity chosen by Ivan.

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