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.

Wednesday, 18 April 2012

Your poison running through my brains

So yesterday I was back at the Beatson for a quick exsanguination and to pick up my bumper bag of poisons for the next stage of my chemo. I also got to see a picture of the inside of my own head, which beats most people’s holiday snaps.

As usual, there was a fair bit of hanging about as the bloods were tested before word could come back that yes, I could have my next batch of harsh chemicals; but given that they take enough to fuel a small black pudding factory, I suppose that’s only to be expected. All fine, thanks for asking - still red and packed with platelets and white cells and other circulatory stuff in all the right quantities.

So I got the little capsules of venom, and this morning I embarked on phase three of killing the cancer with poison. It’s the second course of adjuvant chemo since the extended initial treatment stopped in February, and I gather the dose is now ramped up to or close to the maximum I’m allowed, which I find quite encouraging on the basis that if a bit has worked so far, then a lot will work better.

Temozolomide, the particular flavour of chemo I’m on, is pretty kind on the side-effects front as long as I’m careful how I take it, and I’ve experienced none so far so I’m fairly unconcerned by that. Cancer patients receiving intravenous chemo often report terrible debilitation and pain and have to endure hours of sitting with bags of chemical foulness dripping into their bloodstream. Christopher Hitchens wrote beautifully about this. Mine is four little pink capsules to be swallowed of a morning before I go about my day, and I’m very pleased about that.

The expected side-effect of my chemo is nausea, but I haven’t yet experienced that thanks to an anti-emetic called ondansetron which seems to work perfectly as long as I stick to the rules: I wake up, take the non-vom, wait for half-an-hour, take the temozolomide, wait for half-an-hour or more, then have my breakfast and my regular Losec and Keppra and dex (oh my). Apparently the temozolomide is jealous of its personal space and really doesn’t like sharing stomach time with anything else, even the ondansetron. But it doesn’t hang around for long, so once I’ve given it half an hour or so it has already charged off through my stomach lining and into my bloodstream, leapt across the brain-blood barrier and is busy kicking the DNA out of any dodgy braincells while I’m tucking into a morning omelette and coffee. So that’s all good, and I only have to do it for five days at a time.

I’m told that now I’m on a higher dose I may also feel some fatigue, but given the other things already causing that, I’m not sure how I’ll tell. The after-effects of the radiotherapy are still causing tiredness at completely unpredictable times and to wildly differing degrees, and I was told yesterday that the steroids I’m on - sexy dexy, the little white pills I’d previously taken as my saviour from a general sense of knackeredness (see The Joy of Dex) - might also now be contributing to it.

Funny things, steroids. Dexamethasone is known for boosting energy, appetite, and even creativity - it’s widely abused by Bangladeshi prostitutes, I have read, because an energetic, chubby and inventive girl is always in demand there - but it seems that after a while it can have the opposite effect, and can cause you to lose muscle strength. According to my consultant, the fact that the four flights of stairs I used to bounce up to my flat are now half-destroying me on at least a daily basis is evidence of this. They are a bit of a killer - I’ve seen them break quite athletic friends, postmen and Mormons, and I have considered buying washing machines purely to see them being delivered - but I’ve been scaling them for the best part of 14 years and could do it without breaking sweat. Not now.

So my dex is being cut back, which is probably not a bad thing. It’s quite addictive and not really very good for you in the long-run with a whole range of disgusting side-effects, most of which I'm glad to say I've avoided. And I have put on a hell of a lot of weight since this whole episode began - close to two-and-a-half stone - which I’d quite like to reverse. With that and the radiation-inspired baldness, my head now looks like a particularly uneducational globe bearing just one oddly-shaped and lightly-napped landmass. And jowls. And an expression of self-disgust and annoyance.

From the inside… well, the results of the scan I had a couple of weeks ago were back from Supa-Snaps, so I got to see the state of play yesterday, but while it’s interesting to see round the backs of your own eyes, it wasn’t that revealing. Compared to the scan from January, which was a month after the surgery and just before the zapping and poisoning started, this one seems to show a slightly bigger dark bit round where the tumour used to be. This is apparently dead brain, killed by the radiation, and is supposed to be there, so while that’s good, that's also about it. The picture was more of a damage report than anything else, and didn’t really give any hints as to the tumour itself, such as whether it has been completely fried or whether it’s trying to grow a new head, which is of course what I would most like to know about. Probably.

Apparently this is normal, though, and this first post-treatment scan just provides a baseline against which future ones can be judged. The next isn’t for another eight weeks or so, but I’m told there will be a much clearer picture then.

Ideally a lump-free one.

Thursday, 12 April 2012

Bully for you...

One of the nice things about doing this blog is that I do get some very supportive comments; often from people I don't even know.

'Course, they're not always supportive, but that's fine: if anything, I'm a little surprised I've attracted so little opprobrium so far – I have been pretty glib about a subject about which people are somewhat sensitive, although I suppose that as I do have cancer myself, I also get use of the subject-specific Get Out Of Jail Free Card.

A couple of weeks ago, I wrote a piece about post-radiation fatigue, about being tired and being tired of being tired. It wasn't particularly controversial, but it pulled in my first negative comment on the blog's heraldscotland.com version – along the lines that the commenter was himself too busy to be tired, with a subtext of "pull yourself together and stop whining". Fair enough: I'd spoken, someone spoke back, and it was published. Fine by me.

Doing anything in public these days is an interactive process, or should be: if I open my laptop and let my keyboard rattle, I can only expect to get a reaction, and it needn't be a positive one. I'm cool with that, and I don't even get paid for doing this: I do it to amuse, to raise money for the Beatson, and because I'm a great big show-off. In the paid part of my career I've attracted much worse, including abuse, legal threats, and the offer of a kicking from a now quite-famous TV comedian (which I might tell you about one day if I can work out a way of doing so without having to see a lawyer).

Anyway, if you do make your living by being in the public eye, you are absolutely fair game: you use the media, you need to be prepared to be slagged off in the media, and be aware that these days, the media is everywhere and accessible to everyone. That's the Deal.

Or No Deal, as weirdly-coiffed TV buffoon Noel Edmonds seems to think.

Edmonds, you see, has declared himself "incredulous" to find that someone set up a Facebook page called "Somebody please kill Noel Edmonds". Now, this is the man behind Crinkly Bottom, Mr Blobby, and endless TV practical jokes, so we know he has no actual sense of humour but, still, you'd have thought someone in the self-satisfied talent-vacuum's entourage would have taken him aside for a minute and explained that a Facebook page of this nature is really just the online equivalent of screaming at the telly, with a cuddly social dimension thrown in, and not an incitement to murder.

Apparently not. The precious 70s throwback felt he was being cyber-bullied. He considered going to the police, he claimed, but told the Mail On Sunday (privately, I assume?) that he didn't want to ruin some young person's life with a criminal record and decided instead to confront him face to face. So, using just the bare resources available to a multi-millionaire media star, Edmonds hired an online security firm to track some daylight-averse PhD student down to his university, which he then contacted demanding a meeting with this hapless soul in exchange for not going to the cops. The poor sod apparently turned up terrified, with his girlfriend and sister in tow, to humbly grovel his remorse to the beardmeister.

The thing is, we're living in a time when the media and the public are effectively merging. We can all publish, we can all broadcast – social media has made it possible. But there remains a kind of celebrity who thinks he has the right to use this media-public amalgam to pick up all the praise and cash it brings, but can back off with a wounded expression when his two-headed benefactor wants something back.

Take charming, floppy-haired commercial sex enthusiast Hugh Grant. I'm not suggesting for a minute that just because he has used the limelight as much to promote his own ends as he has been forced into it, it was OK that he had his phone hacked by the tabloids. Just that he can't occupy any kind of moral high-ground without skidding off it in a cascade of his own slime. He's done the Deal.

As has the far less obnoxious but still quite self-centredly whiny Radio Five Live presenter Richard Bacon, who got to bring a bit of non-journalism to BBC Three recently in which he spun an hour's telly out of confusing some offensive Facebook material directed at him and his family with the genuine problems of real-life cyber-bullying and RIP trolling.

Bullying is a serious matter which makes thousands of teenagers truly miserable and causes deaths each year; cyber-bullying is that perennial problem on a different platform and is no better or worse for being electronic. RIP trolling is the weird practice of putting abusive messages on tribute pages to the dead, and is simply cruel to the vulnerable. The hurt feelings of an overly-precious radio presenter don't really compare to either.

Which brings me back to Edmonds. Who exactly is the bully, here? The student who posts a joke Facebook page about killing a intensely annoying but ultimately irrelevant public figure, or the very rich man who uses the threat of law and cyber-security companies to track down and terrify that student, force an apology, and then take the tale to the press himself?

I think the online community has already come up with the answer to that. A quick search on Facebook this afternoon reveals that while a page called "Noel Edmonds fan page" has 84 likes, another called "Noel Edmonds is a Twat" has 322.

Actually, it now has 323. I couldn't help myself.

Wednesday, 4 April 2012

Don't panic!

Pay attention: this is important, and it directly affects you, your family, and your impending Easter holidays.

The union which represents charity collectors is likely to go on strike over the break, so it's vitally important that you all rush out and invest as much as possible in my JustGiving page for the Beatson right now, or the planet will surely slip from orbit and spin into the sun. Which will melt all the Creme Eggs.

Seriously. Get to the bank. Queue up. Take a jerry can.

Then, once you've done that, queue up again to put it all back in since the page only takes electronic donations, and transfer it all here: www.justgiving.com/puregns

Done that? Good. You know it makes sense.

I was considering other methods of giving. There was, for instance, the deluxe package, in which for £250K to the JustGiving page you can join Clare and me for a curry in our flat and have your say in influencing blog policy. But I've withdrawn that one on the grounds that it's corrupt, not to mention quite creepy, and I don't want Peter Cruddas anywhere near the place.

Instead, for the same sum (plus VAT) you can have a very expensive pasty in a paper bag. It has to be a take-away, I'm afraid, but it's guaranteed not to be cold, or to cool down until you're well off the premises and could be reasonably argued to have eaten it while it was hot.

As you can tell, I've been spending far too much time in front of the BBC news channel again. I was off sick last week, you see. Just a cold, thanks for asking, but apparently I'm just as entitled to them as anyone without cancer, so I'm making sure I get my fair share before the country runs out.

And at least my three day phlegm-fest on the couch was educational. I learned two very important things: men who have a lot of money and yet have never had a proper job should not really be allowed to run the country; and people who take their advice despite this are really quite special.

I use the word "special", you understand, in that kind new way we’ve developed because we're not allowed to say "no' right" any more. Possibly they think the government is talking directly and personally to them – that would certainly account for their surprise that they weren't alone when they turned up on the forecourts.

In England, of course, it's to be expected. The UK has a Conservative government - there are allegedly some liberals in the mix too, but I’ve discounted that on lack of evidence - so it’s only natural that they advise conserving things: the level of petrol in your four by four; a garage full of buckets of highly volatile hydrocarbons; the gene pool (by stocking your garage with buckets of highly volatile hydrocarbons).

Thing is, here in Scotland, Conservative advice doesn’t generally go down all that well. And while that is comforting because, for instance, our healthcare remains un-sold-off, while down south David Cameron is showing how much he loves the NHS by wrapping bits of it up to give to his friends, it’s worrying because we had petrol panics here, too.

So who was on the forecourts? Not Tories, because we have fewer of them than we have pandas, and with less chance of growing more. And now they've dispersed, we've no way of finding out. They're out there, around us, and we don't know who they are, like the pod people from Invasion of the Body Snatchers. It's quite scary.

All I can say is this: Don't panic. Don't show fear, they can smell you. Keep on reading books and papers with long words. Put on Radio Four, it confuses them.

Keep Calm and Carry On.

And leave me some bloody petrol. I want to drive to the Lake District on Friday.