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 www.badscience.net.
And leave
it, optimistically, at that.
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