Wednesday, 26 December 2012

And now the Christmas comeback tour

Just in time for a happy holiday, on Monday I popped into the Beatson for my latest scan results. And, like a crap 80s band, it seems the tumour has been reforming for a bit of a Christmas comeback tour.

Not in a big way. Not with the full original line-up. But there's something there which wasn't when I had the last scan back in September. That's why I felt so tired for a few weeks there. It wasn't so terrible, but it left me unfocussed and too weary to work, although I felt better again once I was back on the steroids, and after I'd got over the highs and crashes they threw into the mix. I feel OK again now.

But my early unwelcome Christmas pressie from the oncologists was a shock. While I always knew a return was likely, I'd been hoping that because of my age and resilience it might be quite a bit away for a while. I'd been hoping for, pretty much expecting, a festive all-clear.

But no. So there we go. Something else to be dealt with. So let's get on with it.

I'll know soon how that will be done. So far, I know of some options.

The first is more surgery, the door in the side of my skull gets swung open once more and the Southern General's neurosurgical crack troops get in there and scrape out as much as possible of the new head that glioblastoma just loves to try to regrow, and maybe apply some chemo directly to my brain while they're in there. If surgery is possible, there will be a new flavour of chemo to follow and, if it's appropriate, I may also be given a trial drug which is currently being pioneered at the Beatson, and which they think is pretty effective. So that, I suppose, is the one to hope for. Get it out, get the surrounding area severely poisoned with as many harsh chemicals as it takes, and get on with things. It seems I'm good at coping with major surgery, so if that's the one, bring it on.

What I suppose is the next option to desire is the surgery and the chemo without the trial drug, if it's not appropriate for whatever reason. I don't yet know why it might not be, but I'll find out soon.

The other is that if the neurosurgeons feel they can't get the new stuff out without doing me too much damage, I go straight onto the new chemo regime. That one at the moment is my least favourite, simply because I can't help feeling "better out than in" (as Jo Brand said about Simon Cowell and a life raft).

Looks like the new chemo isn't much different in terms of side-effects to the Temozolomide: fatigue, possible nausea (and I escaped that one last time) and, rarely, actual sickness. Still just capsules to swallow, none of the long sessions plugged into a venom sac with hours of pain and illness that so many other cancer patients have to endure, so no biggie. This one will be, if I remember this correctly, on a two-monthly cycle rather than monthly, but each session will last eleven days rather than five, and there are some dietary restrictions – no alcohol, no cheese, and none of quite a few of my other favourite things. So that's a bit of a bugger, but just something else to put up with. And only during the eleven day cycle – for the rest of the time, I can carry on as normal.

So there are still treatments I can have, and good ones.

This Friday, the oncologists will meet with the neurosurgeons, and take a view on their approach. They've told me they'll give me a call once they've had that meeting and keep me updated. But I'll know everything on Monday (yep, Happy Hogmanay, Graeme) when I have to head back into the Beatson first thing for a full and frank chat about the whole thing. If they do go for surgery, I think it will happen pretty quickly after that.

This time I'll go prepared with more and better questions, too. On Christmas Eve I was a bit too shaken to ask everything I probably should, and my reporter's instincts to haul out the whole story deserted me a bit. I'll let you know more when I know myself.

Anyway, I got over that quickly enough. By the time I was on the bus home I'd converted the panic into fury, and that in turn to my usual equanimity. By the time I was home, I was ready to explain it all clearly and calmly to Clare. And she, my rock that she is, took the news with her usual incredible kindness and strength. She hadn't been able to come with me to the appointment for once – she'd had a dose of something, and while it might just have been something she ate, it's just not fair to take what could equally have been norovirus into a hospital full of sick, vulnerable people – but she still ran me up to my parents so I could let them know. And they took it with their usual support and calmness, too. They're good like that, we're a strong breed.

And, after all, there isn't so much to worry about. There are all those tried-and-tested, effective treatments to have. It's kind of like I've had my head MoT'd and they've found something which needs sorting, so I now need to pop it in for a service.

So, I'll cope with it. Just another battle to fight and win.

Christopher Hitchens wrote during his final illness that he wasn't fond of the combat metaphor so often used in dealing with cancer – everyone's always said to be fighting or battling it, while he said something about seeing it more as being under siege: "I am not fighting or battling cancer - it is fighting me".

He had a point, since there isn't much I can physically fight myself. But I have the best possible army of highly-trained specialists at the Beatson and the Southern General to fight my war for me. Which I know they will do to the best of their great abilities.

And anyway, there is a battle for me to fight. It's not one I've found too hard so far, and I'll keep it up: I will maintain my optimism and equanimity. I just will.

I won't be doing depression, because life is so precious that it would be almost criminal to waste it being miserable. And I won't be doing self-pity either, for the same reason. And just watch the news: there are so many people in the world facing terrible inevitabilities I will never have to, every day, and it would be self-indulgent – and not even in a good way, but in a destructive, wasteful one – to spend time on whining about myself. Better to watch, and understand, and feel compassion instead. Negative emotions are the things to be fought, and in my own mind I will be rising to the mountaintop, clad in anger, spitting iron and fire, to drive them away. And if I'm going to be self-indulgent, it'll be in enjoying myself when I get the chance. It is, as the song says, later than you think. (But not that late).

So, I had a lovely Christmas Day. Clare and I had a nice breakfast, and opened our presents, and then we went up to my mum and dad's, where we had an excellent feed and some very pleasant drinks, opened some more presents, gave others, chatted with the relatives, played with my sister's kids, and had a comfy, warm Christmas time. Then we came home and watched Doctor Who.

As good as it gets, all in.

Sunday, 16 December 2012

Getting off the Information Overload

Here in the Tumourland Fun Park, there are many rides. Not all of them much fun.

The one which has occupied me most recently is The Big Dipper,  the rollercoaster while hurtles the lumpy thrill-seeker from the pits of fatigue to the peaks of steroid anxiety over and over again, by way of an afternoon's entertainment.

I've been off work for a couple of weeks playing on that one. I don't recommend it - it gives you all the low bits first, which is kind of rubbish, then a quick reintroduction of the old dexamethasone chucks in all the highs and subsequent plummets in quick succession: now I'm wired, now I'm tired, now I'm tense, now I'm knackered, now I'm anxious... woooargh!, throw hands in air, go for a wee nap. There are better ways to spend your time. One of my friends told me my last blog had a "great amphetamine flavour". It was intended as a compliment. but I've never had many aspirations to be Hunter S Thompson.

The other popular ride in the Tumourland Fun Park just now is the Information Overload. I've written about this before: it's the one where you get handed a huge tightly-wound tangle of difficult to process data and are somehow expected to unravel it for use; to work things out for yourself and explain them to other people without doing too much further damage in the process. That one's a real blast.

Just to make it a little more exciting, the Information Overload also throws in the internet and the press as an exciting twist. Then it spins you round and round until you're really very confused and quite dizzy.

The internet is one thing, uncurated as it is: if you must journey into its hinterlands, at least remember that you're also probably reading randomly, and check things out with a trusted source – don't just accept everything as if publication somehow bestows an equal value on it all. The news media, however, ought to be one of those trusted sources, providing its readers with reasoned, balanced analysis in easy-to-understand form.

It doesn't, though.

Take the case of Sally Roberts, who ran off with her seven-year-old son Neon (I know, I know) in order to prevent him receiving radiotherapy which medical opinion says he quickly and desperately needs, because she was frightened of its potential side-effects and wanted to investigate more "holistic" alternatives.

Although I think Roberts is a very silly woman, and I don't believe for a second she had the right to make that decision on behalf of her son, I have some sympathy for her insofar as I presume she is also very afraid, and very shaken around by the Information Overload.

Look at it this way…

Suppose you were presented (as I was) with radiotherapy as an option. And the doctors (ooh, suspicious, authority figures) explain that they've done years of research (ooh, scary difficult science funded by big evil companies and probably involving bunny-blinding) and they've worked out that it works very well (ooh, why isn't it perfect?) but there are some risks, some of them potentially quite nasty (ooh, scary, it'll happen, it'll happen, aargh!), but it's the best they've got, and actually very good for most people.

Supposing instead you were presented with… let's call it fluffytherapy, as another option. And the alternative therapist (ooh, alternative!) explains that after centuries of natural holistic chanting (ooh, natural, holistic!) done by some Amazonian tribesmen for no related purpose at all, they've just decided it works (ooh, just works!) and because it's never been tested but is quite possibly too ineffectual anyway it has no known side-effects (ooh, no side-effects!) and it smells quite nice (ooh, natural, therapeutic!) so it must be good for you.

And so the Information Overload spins the gullible, and even the not so gullible, around until they're too dizzy to get off on the side without the cliff. Did I mention the cliff? That's the third option, which is that the major side-effect of not taking the radiotherapy is death.

All that data, so much of it worthless, and no-one except for the medical establishment Roberts seems to regard with such suspicion to put it in perspective, to explain why the evidence supporting radiotherapy carries more weight than any supposed alternative. It's a shame that she sees them like that: they were very good to me - I had a meeting with an oncologist, a radiotherapist, a specialist nurse and others right back at the beginning, pretty much just so I could ask questions, and it was very useful even if I've barely stopped asking more since.

But maybe she needs another trusted source. Yet even in the quality papers, in the last week I have read columnists who instead of trying to analyse the situation have reinforced her silliness by wittering about how not enough consideration is given by doctors to parents' instincts, as if some vague feeling somehow has to be given equal weight to years of research and experience. Sure, doctors should take parents' feelings into account, insofar as they should be making sure that they understand why the recommended treatment is the recommended treatment, and not Hopi ear candling or whatever. But there the line is drawn - after that, parents have to realise that they have a responsibility to protect their children, not a right to endanger them. Some parents are full-body resurrectionists who want to prevent their sick kids from receiving blood transfusions, others think the vile practice of  female genital mutilation is in the best interests of their wee girls. Against hard evidence, instinct, belief and mere preference mean nothing at all.

So that was the quality press. Worse again, though, was the huge steaming turd of an article dumped by one of the mid-market tabloids on its readers, under the headline "Do Cancer Alternatives Really Work?".

I'm not going to link to it, because I don't want to encourage it. But, below the meaningless headline (what is a "cancer alternative"? – a new way in which our cells can explode into uncontrolled growth?) this piece of non-journalism used the Sally Roberts story as a run-in to a seemingly random selection of descriptions of supposedly alternative therapies, some of them quite dangerous in themselves, others inherently useless, but all potentially harmful if regarded as in any way alternative to the properly researched and continually developed treatments which we know work and are getting better. And so a British newspaper and its website managed to give apparent equal weight to the stupid and the real.

It's not unusual. The standard of health and science reporting in the country has long been appalling. Once again, I recommend Dr Ben Goldacre's insightful but also very funny book Bad Science for a well-written and clear take on this, and for some pretty shocking stories about so-called alternatives therapies, too. Why not try his new one, Bad Pharma, as well?

I also recommend the website Sense About Science, which aims to help us all decide what's real and what isn't when it comes to science and health. It claims a database of 5000 scientists from whom to draw, including Nobel Prize winners and famous names such as Dr Simon Singh. It also currently carries a corrected version of the tabloid piece I mentioned before, and I do encourage you to read that, because it manages to point out some dangers and clear up some misconceptions.

I'd also like to point to Sense About Science's excellent leaflet I Don't Know What To Believe. Please give it a read, and bear in mind its ideas when you read science and health stories. More so if you write them. It's nice and clear, even to us journalists, who were quite often the arty kids who weren't that good at sums.

It doesn't contain all the answers, but it makes getting off the Information Overload just a little bit easier.

Sunday, 2 December 2012

This year's Dexmas season begins...

Just a year ago I was sitting in a bed in the Southern General's very fine neurosurgery department, bored and slightly bewildered  from a night rendered sleepless by general hospital racket, an octogenarian escape artist in and mostly out of the bed opposite and his nightwear, a 3am catheter removal, and regular unironic professional awakenings to check I was sleeping naturally and knew who the Prime Minister was.

Either through the sleep deprivation or some sort of morphine hangover, I felt particularly disinclined to open the second door on my advent calendar – the previous day's had been in the side of my head and the choccy had been horrible. But I otherwise felt pretty good, under the circumstances.

Now, exactly 12 months later, I feel pretty good again. Well, actually I feel slightly sick because one of the cats licked my hand while I was typing that last par and left a brown residue. Other than that, though, post shower I'm all right.

I haven't been feeling so good for the last couple of weeks, though. Not ill, but tired again. I was told that chemo fatigue could last for up to six months after I stopped popping the poison back in August, but it had calmed down a lot and I'd hardly had to take a day off since September. Yet just around the beginning of November it started to come back, and around a fortnight ago it got worse, this time with an exciting new edge of… well, a kind of low feeling (I'm hesitant to use the word "depression") which made the weariness just that bit more wearisome. I'd also had a weird set of intermittent allergy-like symptoms - sneezing, runny nose and congestion, but none of the other nasty cold stuff - for about six weeks, and the pressure in my sinuses was starting to give me headaches.

I'd been warned to watch out for headaches, but these were mild and passed quickly, so I wasn't concerned. I emailed The Beatson, but they didn't get back to me, so I assumed they weren't very concerned either. But I went to see my GP, who took some bloods, gave me an antihistamine, and signed me off for a week's rest.

Which I needed. I went in to work the next day because I had a meeting and wanted to make sure everything was set up for my absence, but I must have looked a bit unfocussed and was told to go home. I then spent the next few days flubbing around the place doing little more than eating or sleeping, with the cats watching me with a triumphant air, seemingly convinced they'd won the larger of the two feeding monkeys over to their ways. One of them also began to see me as a conveniently well-padded immobile warm thing on which to sleep, but that was OK because I was starting to regard her as a sort of personal furry draft excluder. For most of the past week I've slept the days away, and it has been chillier.

I don't really like sleeping during normal waking hours because it seems like a waste of precious, escaping time. There are also side-effects, one of which turned out to be further headache potential from failing to nod off in a comfortable position and waking up with a stiff neck until I could crack it out. Another turned out to be waking up and reaching for my Android tablet, only to find its black, shiny surface covered in sticky pucker marks, as if someone had been repeatedly kissing it. Well, I quite like it, but I'm not that taken with it. Seems one of the cats had been sitting on it. So that made me feel a bit unwell for a while.

At least the antihistamines had sorted out the sinuses. But I'd discovered the other ill-effect of daytime sleeping, which is letting broadcast media get too deeply into my psyche when I'm in a suggestible state.

As usual, I was starting my day with GMS on the radio for the Scottish news and an entertaining grumble at the presenters for not asking the questions I would have asked, followed by BBC Breakfast on the telly, which I watch largely because I feel slightly sorry for Bill Turnbull ( it's his wee face when he has the latest point-free celebrity talent-vacuum plonked in front of him for interview, and I feel I can almost read in his expression: "I used to report from The White House, you know", a sigh, and then, "never mind, just two and a half years to the next general election".) Problem was, though, that if I then fell asleep during Olly Murs or Joss Stone or whoever that morning's personality gap was, I'd be out until lunchtime, which meant I'd wake up irritatedly humming the theme from Bargain Hunt. 

At least, I think it was Bargain Hunt – it might have been Cash in the Attic, I'm not certain – the one presented by the slightly effete, mustached man who reminds me vaguely of Lenny the Lion. Actually, it might have been the theme from the one about the rescue helicopters instead. I really don't care much – it's just the start of the evidence that falling asleep in front of the telly just doesn't work for me in terms of relaxation but subconsciously adds to my inner pool of bile and spite. 

If I've managed to switch to a news channel and it's midweek during the day, I might just wake up shouting during PM or FM Qs, but if I've gone to Channel Four I might sleep all the way through Countdown and then wake up feeling hate-filled because Noel Edmonds has come on. Sleeping later is worse – I've been so tired that kipping off  mid-evening hasn't affected my night's sleep, but I have now found myself with a compulsion to enter Masterchef, not because I fancy my chances as a cook, but because I want to stand face-to-face with Greg Wallace and say, "right, baldy, you and me, car park, square go, now".

So, anyway, that was my pattern for last week – sleeping, despising… oh, and hoping for a virus. That was because the blood tests I'd had were for a viral cause for the tiredness, but also for diabetes, so a wee bug seemed like the far preferable option.

Then on Thursday I went back to the GP and it turned out I didn't have either of these things, so she gave me some antibiotics and signed me off for a further fortnight. Later on she phoned me to say she'd been in touch with The Beatson, who weren't terribly concerned but wanted me to go in for a scan ( I was due one soon anyway) and to start taking the steroids again.

It's a low dose – 2mg a day – but that's four times as much as I was taking when I came off them back in July. So I took that on Thursday afternoon, and took the same again on Friday morning, and by Friday mid-day I was ripped to the molars on dexamethasone and no longer doing the dinosaur after I'd hauled myself to my feet. Instead I almost skipped down the road for lunch, insofar as that is possible for an overweight, middle-aged Scottish man, and then felt a bit of a con as I emailed into the office to say I'd been signed off for another two weeks' rest. But I couldn't have gone in then – I'd have been unbearable. Anyway, once I'd finished my paper and got myself all worked up about Leveson I was exhausted again and had to go back for a bit of a sleep, from which I woke up hyper at teatime and chattered at Clare all evening. I thought I was being quite insightful and witty, and she rather charitably agreed when I checked, which suggests I was possibly also being slightly paranoid.

I've been much closer to normal levels of energy since, but there is still a slight steroid edge – looking over what I've scribbled here this morning,I can see it in my own writing. It doesn't exactly read like The Diary of a Drug Fiend, but it does read a little like The Blog of a Slightly Cynical Man who's had Too Much Coffee.

Under more normal circumstances I'd probably have left out the bits about the cat residue and Greg Wallace, for instance. But this is supposed to be an accurate record of what's going on for me as the cancer treatment proceeds, so here you go - you can keep the weird bits, too.

It's now Sunday evening, and I think I need a nap. By tomorrow, I think I'll be more used to the steroid again. I've been on higher doses before, and coped fine.

By then I'll be waiting for my MRI appointment, and then comes the scanxiety. More on that next time.