Tuesday, 24 April 2012

Just for the record...

Right, well, that could have gone better. Last week I was waxing lyrical about my gentle chemo regime, how as long as I stuck to the procedure carefully it would wing past without side-effects and let me go about my day. And it did, on day one.

It was just days two to six (of a five-day course, I should add) that I spent flopping about the place, feeling alternately shattered and pukey: I’ve had such a lovely week. It really irritates your stomach, that stuff, when you get to the high doses. I’d hoped to get away with it because I’d had no real side-effects from the previous courses, but this one seems to be at the level which hits me. Ah well. At least I was warned.

It’s important to have all the information at your fingertips, even if there’s not much you can do about the queasy inevitability. Which is why I was delighted to read this week that Edinburgh’s Western General is giving prostate cancer patients CDs of their diagnosis.

Now, the bit where a nice doctor sits you down and tells you that you have cancer - at whatever end - is perhaps one of the worst moments in your life. It’s hard to imagine a happy circumstance for it.

So in many ways this is a surprising CD to want for the collection (although I do have this disturbing mental image of black-clad teens sitting round by candle-light: “Yeah, listen to this one, man… he’s told he’s got myeloma, and he like, totally breaks…” - except it’s on a CD, so they wouldn’t know what to do with it).

But I do wish I had one of mine. These CDs are an excellent idea. It's a shattering moment, and there is no way you can take in all the information you’re being given. When you get that news, adrenaline punches you in the neck, the blood in your head starts to roar, and a voice starts screaming “I’m dying! I’m dying! I’m dying!” very, very loudly. It’s hard to take stuff in with that going on.

I don't think I did badly with mine, but I got the information in stages, from “you’ve probably got a brain tumour” through “yep, that was a brain tumour in there”; so when they got to the post-biopsy “OK, this isn’t good…” I was getting used to it. I snapped into a kind of interview mode, asking a lot of questions, possibly a little aggressively, and got a lot of information. I think I retained most of it.

But I didn’t take notes or anything. I know, I know, some bloody journalist. So all that vital information is just washing about in my (now slightly reduced) grey matter. An accurate record could be very useful indeed.

I wrote quite extensively at the time about the problem of not only assimilating all this information but passing it on, wondering how other people manage (see Results Now In and Breaking The News Without Bending It).

It bothered me that while I have had a long career gathering and breaking the news - or at least scraping it together and damaging it slightly - other people don’t have that experience, and that to dump all that raw steaming information onto them without the chance to put it into context was really rather cruel.

When my news was broken to me, my partner Clare was there with me. Here’s what I wrote at the time:

Even as I was hearing the unwelcome tale for the first time myself, I was aware that Clare wasn't necessarily getting the same story.
We were handed a lot of information on Wednesday morning, but there were two pieces which stood out:
1. People with my condition have lived for just months or more than a decade.
2. The average life expectancy for my condition is around a year.
Just as I was thinking of the first that if a reporter had handed me copy with such a broad statement in it I would have chucked it back at them for clarification – not least to define "more than a decade" – Clare was murmuring, "even ten years isn't enough". And with the second, while I was thinking, "Who's in the spread? Lots of 75-year-olds? People with huge, deep-seated tumours?" she was hearing, "a year".

I should point out that Clare has years of healthcare experience and so is at least as capable of  assimilating this kind of information as I am. She has just reminded me, for instance, that there was a medical student observing throughout - I'd forgotten all about that - but the whole situation was staged so much as if we were being delivered very, very bad news that the two of us focussed on different things, effectively coming out with different stories. 

By the time we’d got home, and certainly by the time we had begun to tell people, we both had it all in context. But if we hadn’t had the facility to do that, a CD of the diagnosis could have been very, very useful.

I know a lot of people wouldn’t want to play it. I understand that. I think it might be helpful if they did, at least once, but I understand why they wouldn’t want to. Equally, I can see others playing it over and over again, looking for loopholes. I think I might have done that. A little creepy, perhaps, but at least you’d have all the information.

If that information is “you have six months to live” that’s not perhaps much help. But with a cancer like mine, which is incurable but controllable at least for a while, knowing the details is vital. Because if you can focus on the positive - that it is controllable, that people have lived with it for more than a decade - then you can keep the negative stuff at bay.

And that’s almost all the battle.

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