Monday, 12 December 2011

Breaking the news without bending it

So I've had to break the news all over again. And it has been a hell of a reporting job.

I realise that at the moment my profession sits somewhere between kitten-blinding and child vivisection in the popularity stakes, and that people currently doubt the integrity and even the skill in what at least some journalists do. But there are skills involved, and I have been very pleased to have them over the last few days.

The problem with a story like this is making sure it's right – not just accurate, but delivered in proper context, with what information I have which is useful and relevant presented well to give the clearest, truest picture I possibly can of my situation.

"Bit of a brain tumour. Getting it out. Should be fine" was frankly tricky enough. "Incurable but controllable cancer – but don't panic, there's a lot of context here…" is bloody difficult.

A long career spent breaking or at least denting the news has left me very aware that the consequences of getting this wrong could do a lot of damage to people I care a lot about: too much one way and I introduce unnecessary stress or even panic, too much the other and I'm insulting their intelligence by injecting a blind analgesic optimism which is no real help anyway. It is important to tell the truth, and to do it well.

It has made me wonder how people who don't have my background and who get handed lumps of raw, steaming information like this to pass on manage to do it at all without inflicting havoc. Maybe they just have to spew it out and watch it come right or go wrong with time. That seems deeply unsatisfactory, unkind and harmful. Because the fact is that despite my having an incurable form of cancer, and an aggressive one, there isn't really much room for panic, and quite a lot of room for real hope.

Trust me. I'm a reporter.

As on the occasion when I was first given the news that I might have a bit of a naughty lump hanging off my right temporal lobe, I was spared having to break this latest news, that my cancer isn't one which just clears up, to Clare because she was in with me at the time.

But this 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".

Because Clare is intellectually brilliant and a health researcher who understands stats, she twigged the story as it really is pretty quickly afterwards. Which is, incidentally, that while I know what it is that is likely to kill me, I don't know when, and it's probably years and years away. But I think that because like other normal people she doesn't automatically receive all her information through the reporter's filter that the person giving it might be a lying, dissembling git – even when they're actually nice, professional, well-meaning doctors with no interest in spinning anything at all – she found taking the data in more upsetting than I did.

All of which meant that I wasn't at all looking forward to the afternoon's next task, which was to go and tell my parents. This one, in particular, had to be reported well.

I wanted to get them together but not to phone first and have to come out with any information too early or out of context, so in the event we drove past the house and went and drank coffee in Clarkston until I was certain on a subsequent pass that they were both in.

I think I made a decent fist of it. I explained that we'd had the results, that what I had was incurable but controllable, and that I'd be starting an intensive course of chemo and radiation in January; once that was clear, I'd be on a programme of regular monitoring to catch any, admittedly likely, recurrences so that they could be zapped in turn. I didn't mention any timescales because, to be honest, I didn't know them and still don't – all I had was some inherently misleading information I hadn't yet had much time to put into context.

They coped well, because they do, just like the last time.

The next job was to tell my sister. That was a phonecall that evening, and I did mention the prognosis information to her because by that time I'd been able to put it into the proper context I have here, although I also mentioned that I hadn't given that information directly to my parents. I meant because, as I have explained, that I didn't see it as helpful at that time, but she may have taken it that I was shielding them from information, which wasn't strictly what I was trying to do. But she coped well, to a soundtrack of yelling kids, because she does. Just like the last time.

Then it was a quick email to some of my friends, again with the prognosis in context, and finally the blog update Results now in… Facebooked and Twittered on Friday, to let the power of the world-wide information social highwebs do the rest of the work.

So that was it. Story told.

Except not…

On Friday night, my sister emailed to mention that my mum had been asking about this blog, and was keen to read it. She'd dissuaded her, saying there were references about "tubes going into places and suchlike" to which my mum had replied that she was quite familiar with that sort of thing, but had dropped the subject. But my sister was suggesting that if I was keeping anything back, I should be circumspect about who had access to what I was posting here and to Facebook and elsewhere, because my parents were getting phonecalls from well-wishers who would see things on forums they wouldn't.

I should say that I don't mind my mum reading this blog: it's intentionally public, and while much of it is in poor taste and contains a small amount of slightly fruity phraseology I wouldn't use in front of her, there's nothing here I wouldn't say openly in one way or another to pretty much anyone. And I think it is clear: while face-to-face I may occasionally appear to be wandering the foothills of Mount Asperger's or one of her sister peaks, I do think I get myself across well in print.

But the problem of filtration had raised its head. I didn't want people Googling glioblastoma and calling my mum and dad with some kind of well-meaning horror story, or even taking information from here out of context and just not bloody reporting it properly. So on Saturday I had to pop up to my parents' to carefully make it clear that I'd had the two pieces of information I mentioned above, but that they had to be taken in a certain way.

It helped quite a lot that by that time Clare had been into the Maggie's Centre and I'd been to see my GP, both of whom had independently backed up my own conclusions on the issue: that I am not typical in this, and that I am not going anywhere anytime soon. Outside of exceptional bad luck, I've got years, me. Decades, even.

So then the story was told.

I've probably gone on long enough, but there is one thing more I want to stress here. I am talking about good reporting, about data management which allows sensible, true information to be presented in a useful, beneficial way without obfuscation or delusion. I am not talking about spin, which is about using the same powers for evil.

Nor am I talking about the kind of alleged reporting which takes some figures (ideally from 'studies'), adds some opinion (ideally 'expert') and mixes illiberally to come up with whatever pile of old cock you happen to be looking for, even if it contradicts the similar pile you concocted yesterday. I could link to examples of how this has been used to prove how both men and women are more likely than each other to get cancer, or indeed how being left-handed, black, or wearing flip-flops all increase your chances of getting a scary lump, but I'm not going to because it's wearing and stupid and I don't feel like giving those who do this stuff even the tiny amounts of traffic I can bestow.

Instead, I'd much rather refer everyone to Ben Goldacre's magnificently insightful and funny book Bad Science (Kindle edition here), his eight years of Guardian columns on the subject, and his website

And leave it, optimistically, at that.

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