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.

Friday, 9 November 2012

A new hope?

There isn’t a good place to get cancer (I really don’t recommend the head, for instance) but some are better than others.

For a while there, it looked like America was about to become one of the others. Again.

But the good guy won their weirdly complicated election, and although ObamaCare doesn’t really come close to our free-at-the-point-of-need NHS, it’s a step in the right direction, and it’ll be nice when it’s finished. It’s also a progression Mitt Romney had pledged to reverse, despite having introduced something similar in Massachusetts during his tenure as Governor there. Which seems odd, unless you uncharitably see Mitt as a spineless flip-flopper who only won the Republican candidacy over his more extreme (no, really) opponents because he dribbles less and can dress himself, but is nonetheless in thrall to the far right, which thinks ending ObamaCare is the right thing to do.

It’s odd that there are people in the world who think that it’s morally correct to deny people accessible healthcare. Apparently it’s to do with their right to choose. The choice between them paying a little less tax and someone else getting to live, I presume. Yay for civil liberties.

But that’s not a choice to be made for now, because Obama gets to keep the nice Washington mansion for another four years. Which is good: he must have just got the couch in front of the telly worked into his shape. That’s something to strive for, and it’s a terrible thing to deprive a man of his own properly-grooved sofa. Happily, Barack gets to watch his West Wing box-set in comfort, and US patients get an era of renewed hope.

Which is apt, because this is a hopeful week, running as it does towards Remembrance Sunday. Which should be a day of hope, each scarlet flower a symbol of optimism that the human species can renew itself after horror and will remember not to repeat the stupidity.

Of course, we don’t always remember. Which is why we need the reminder.

One spectacular example of forgetfulness recently came from our plate-faced pudding of a Prime Minister, who seems to think that despite the economy remaining in the toilet, a postal order for £50million would be just the ticket for a wizard wheeze marking the start of the Great War, to “capture our national spirit in every corner of the country”.

Right, Dave. Because the First World War was just like the Jubilee and the Olympics, which went awfully well. Let’s have another one! After all, we won, didn’t we? There must be some brand advantage in that.

Or you could just buy a bloody poppy. It would be a lot cheaper, and commemorate the end, not the start, of one of the least laudable periods in our history, when for complicated political reasons an almost entire generation of youth was encouraged to trot enthusiastically off to conveyor-belt death by disease, drowning in mud, and the exciting new inventions of chemical warfare and machine-gun fire.

It’s because of buffoons like the leader of the Eton Mess that poppy day is at all controversial, that white poppies become a popular alternative for those who wish to celebrate peace rather than war and others simply refuse to wear a poppy at all.

I appreciate that sentiment, but I don’t agree. Abandoning the symbol doesn’t help: we need to keep the red poppy, not as a celebration of war, but as a annually-renewed reminder of its bloody foolishness; of the needless, wasteful horror and terrible loss; that Dulce et Decorum est really is an old lie.

We need to keep that splash of blood with its blackened core, the gunshot wound worn above each of our hearts, centre stage amidst the military show of Armistice Day.

That’s our renewed hope. Every year. Sometimes, it even works.

Friday, 2 November 2012

Happy birthday to me...

My earliest memory, I believe, dates from 42 years ago today: November 2, 1970. It’s dark, I’m lying down and my father is bending over me, saying “and tomorrow you’ll be two”.

I think this is a true memory. I’ve always thought it to be so, and I seem to have recalled it many times throughout my life, particularly as my birthday approaches. But whether this has refreshed it, or merely rebuilt it and I just remember my own construct, I can’t be certain. According to Wikipedia’s entry on childhood amnesia (the phenomenon that adults cannot remember early childhood clearly), "memories from early childhood (around age two) are susceptible to false suggestion, making them less trustworthy". A bit like Wikipedia. 

I mentioned my memory to my dad some time ago and he doesn’t believe it happened, but that could be because he doesn’t believe I could remember it. I think it is more or less accurate, but I may have altered some details. I’m pretty convinced of the words spoken, but my father’s face is blurry – it’s undeniably him but I’ve no clear picture of him in his late 20s. Also, I think I’m in a bed, not a cot, and in my own bedroom: that’s dubious because of another early memory I have, of being just a little older and breaking out of my cot, which was in my parents’ bedroom.

That apparently quite regular escapade is still occasionally the subject of an amusing family anecdote, but I'm convinced of my memory of doing it because I remember what it felt like. One end of the cot was an integral blanket box, the outer face of which was a curved roller door. I remember clambering onto it from inside the cot and then the discomfort, the pressure on my ribs, as I spun myself round on my chest on its angular surface so I could slide down over the roller. It hurt, but not enough to stop me doing it over and over again. I think it would be hard to construct a memory of physical sensation like that.

And tomorrow I’ll be 44. How very middle-aged. Still, it’s fashionable to be middle-aged – everyone I was at school with is doing it, even the cool kids.

I’m not quite sure when you become middle-aged. Not halfway to three score years and ten, anyway – 35 is young these days, and counting anything by Biblical reference leads to nonsense about the Earth having yet to reach its 6000th birthday and our ancestors having the opportunity to own pet stegosaurs. 

The generally-accepted gateway to middle age seems to be at 40, and that is closer to the halfway mark suggested by UK National Statistics, which is just about 80 (except for viewers in Scotland). So by that token, I have been middle-aged for four years, or ten per cent of my life. But these averages don’t really mean much, middle-age is more a matter of mind than of numbers. I think it happens when mortality first bites, at that point when our sense of invulnerability quietly slides away and we see the final curtain flapping in the wind, even if it is still some way away.

In my case, that was just about a year ago. In the run-up to my 43rd birthday various doctors interviewed, examined and scanned me to ascertain why I had thrashed epileptically across the office floor at the start of October; a week later I went for my first MRI, and disturbingly quickly after that had what is probably still the worst day of my life so far - November 16, 2011 - when I woke up to a phone-call telling me my lovely wee Gran had died, and then went into hospital to learn that I probably had a brain tumour. 

Less than a week after that I was chatting with neurosurgeons who asked nicely if they could cut into the side of my head to check. And on December1, they did.

Just days before that operation I started this blog, so everything that followed - the whole unpleasant business of being told that I did have a tumour and it was likely to try to grow a new head, having to tell other people, and then the vaccines and radiation and chemo, the tiredness and sickness and hair-loss – have all been well documented.

So if you've read at least some of that, you'll realise that on the whole 43 hasn't been a great year for me. But while I hate to cast myself as relentlessly optimistic – I do like to examine all available silver linings for clouds – I can’t help seeing the upsides to this year: I married the love of my life, had a couple of great holidays, and my new-found sense of mortality reinforced my sense of how precious time is, which has given me greater ambition to do things for the fun, satisfaction or hell of them (more on that in later posts, perhaps).

And tomorrow, I’ll be 44. So tonight, Clare and I are off for some posh drinks and then a nice meal in a new and highly-recommended restaurant. Tomorrow, I will go out with my mates for some not-at-all posh drinks, some increasingly badly-focussed pool-playing, a curry, and further beerage to finish.

Wish me a happy birthday. And if you want to make it happier, click the donate puff at the top of the page and give The Beatson some money.

They’re the reason I’m feeling good and ready for another year, after all.

Wednesday, 10 October 2012

Enjoy yourself (It's later than you think)

Autumn was always my favourite time of year. Specifically now, mid-autumn, when Keats' mellow fruitfulness is coming into its own but we haven't quite got to the mists yet.

I should perhaps add that Keats' poem goes on to witter about bees for whom "summer has o'er-brimm'd their clammy cells". I'm not keen on the image of clammy cells o'er-brimming at the moment; what with the brain cancer and everything, I feel there's been quite enough of that sort of thing going on.

Still, I like mid-autumn. I like the light and the colours and the smell of the season, and even though it's the time of year when things are dying off, ready for the bleakness of winter, for some reason it always gives me a sensation of excited optimism. And not just because there are conkers to be had.

So it was into all this that I stepped from hospital yesterday, walking into the cold, low sunshine of a beautiful autumn afternoon in which it was good to be alive and abuzz with the knowledge that, for the time being at least, I'm fine.

I'd just had my latest set of scan results, the pics from my third quarterly intra-cranial photoshoot. They came out nicely, thanks. No change - I'm still prettier from the inside out.

I still have a hole in my head, but that's it - no extra tumoury bits are visible.

So I have another clear quarter to look forward to. That's the pattern from now on: another scan, another set of results, another all-clear. Grabbing life in three-month chunks.

The next session in the big, bangy machine is around Christmas, with the results due a couple of weeks later. Until then, no worries.

Yesterday was also something of an ending, as it was the last time I was needed at the Beatson's Clinical Research Unit, where I'd been taking part in an experimental vaccine programme. I gave my last round of blood, and my involvement was over.

When I joined, at the end of December last year, I was among the first on this programme being conducted at the Beatson and a few other centres around the UK, which was slowly accumulating willing and suitable subjects on whom to test a vaccine which had been used successfully against other cancers, but not yet on glioblastoma.

Sure, there was some small risk, but it seemed like no choice at all. I was assured it would have no adverse effect on my other treatment, and since at this stage they were testing for side-effects, I'd get a full therapeutic dose, not a placebo. So if it failed, I reckoned, no problem, I'd still be getting the gold-star treatment in which the Beatson specialises; but if it succeeded... well maybe, just maybe, it would help that treatment along, maybe even save my life.

So I signed on the dots and since then I have had eleven pairs of itchy intradermal injections into the same bit of my leg, and given blood in various quantities, but no ill-effects. The programme is getting close to its required number of subjects, which is heartening, my inner geek is pleased at getting to contribute to cutting-edge science, and my sense of social responsibility is satisfied, too. I'm proud to have been part of it.

Looking at my MRI pics, each shows a kind of rind around the hole where the tumour once was, and that's apparently been seen in other recipients of this vaccine. It's not cancerous and is perfectly harmless, and I like to think of it as a barrier, either defending against or containing the bad cells: I realise this is probably nonsense in medical terms, but I like the image.

I'm under no illusions: I know that radiation, chemo and vaccines notwithstanding, the cancer is likely to come back. Not least because the doctors keep telling me that, which I think is a good thing, as time is short and precious and it's important not to fritter it away in the warmth of a false sense of security. With or without cancer, we all waste too much of our least renewable resource when we should be making the most of every minute.

And right now, I feel good. My fatigue is less frequent and less unpleasant, and the stiff legs are easing off.

I was told yesterday, "This is your time feeling well. Enjoy it."

Yes. I think I will.

Thursday, 4 October 2012

Welcome to paradise

A year ago from Tuesday, I was to all appearances perfectly well, just back from an autumn break in the Highlands.

A year ago from Wednesday, I was sleep-dancing across the office floor, on the right side of my ribcage and with the sides of my tongue clamped between my teeth, wakening in a wheelchair to a paramedic's kind offer of air and a bewildered trip to hospital. The first of many.

The time between has been packed with scans, bad news, surgery, worse news, fear, intra-dermal injections, radiation, blood tests, chemotherapy, fatigue, steroids, stronger adjuvant chemotherapy, more jags and sangrial sampling, a gastric problem which could have pebble-dashed a warehouse, marriage, euphoria, more adjuvant chemotherapy, more fatigue, more scans, more blood, even more fatigue, stiff legs and the resultant Cyberman stride. Yet it honestly doesn't feel like a year. Time flies when you're enjoying yourself.

One year ago today, October 4, 2011, I was at home; slumped, drained and bemused, on my leather couch with which I would become so familiar, on my first of so many sick days with which I would become so bored, wondering what the hell was going on.

A year later, I'm sitting at a picnic bench under a big tree, in an almost perfect little cove on the north shore of Bermuda. It's 28°,  the sea is blue, something's singing in the next big tree along, and there's just enough cloud cover to let me see my tablet screen and type this. Soon I will go in search of beer. Life's tough.

We're here in this island paradise as guests of my friend and former colleague Raymond Hainey: gentleman, journalist, and all-round good chap; and also one of the finest operators the Scottish press has allowed to escape. While he has been chained to the type-face, Clare and I have beached and lunched and beered, and when he hasn't, Raymond has generously driven us to the sights while we have generally got under his feet and cluttered his flat.

And I feel much better for it. Sure, I sunburned my feet on day two (I never burn anywhere normal, like on the shoulders - for me it has to be somewhere awkward, such as the ankles or forearms or feet), and I twisted a knee falling down the stairs in a pub (it was lunchtime, and I'd only had the one pint), but I feel so much healthier; lighter even.

I'm not going descend into hippy wittering about a healing atmosphere, because that would be nonsense. But sunlight lifts the mood, warmth relaxes, and the light exercise of sight-seeing is probably doing me no harm. The Boris Karloff stomp has eased off as my legs feel stronger, and although I still get tired, it feels cleaner, a warm sleepiness compared to the sickening, bone-deep fatigue which hit before. It would be nice to think that easing will continue back in Scotland.

Of course, I will have to return to the results of the scan I had just before leaving.

But in the meantime, I'm relaxing in Paradise. Still with a hole in my head, but relaxing.

I'm not worried. I feel good.

So far it's a happy anniversary

Friday, 14 September 2012

Walking the walk

I’ve started making the old-man groaning noise when I get out of chairs, except with more swearing. I’ve got to say – this cancer thing’s full of surprises. My legs have seized up.

Not entirely, I should say. But it’s not comfortable.

Every hour or so I try to remember to get up from my desk and take a stiff-legged stroll around the office; to the kitchen, the toilet, the vending machines - any destination which has some point to it and which takes me out of view for a bit, so I don't look like I'm doing some kind of circular Boris Karloff impersonation among the islands of workstations.

My wife Clare was first to call it my Frankenstein walk. Frankenstein was, of course, not the monster but the scientist, who as far as I remember had no mobility problems, but Clare's far too sensible to let that get in the way of a perfectly clear description which everyone will understand instantly. I, on the other hand, am far too much of a pedant not to, so I privately call it the Bangles Bimble: I'm thinking of the mummy from Scooby Doo - I Walk Like an Egyptian.

The stiffness is the result of coming off steroids about six weeks ago. I've mentioned it here before, but it's currently the after-effect of my treatment which is bugging me most, so now it's going to bug you again.

Apparently the ligaments in my legs and back have loosened up, but it doesn't feel like looseness: quite the opposite. I stomp around straight-legged until things slacken off, I haul myself out of chairs with my arms if I have sat for too long and am having difficulty with the knee-unbending and thigh-stretching, and going up stairs is difficult. Which is a particular bugger when you live up four flights. My adventures on Google suggest this could last for three or maybe up to six months.

But it will pass.

I'm also now off the chemo. Its abiding after-effect is fatigue, which is much worse than the locked-up legs. But at least it comes and goes, while the stiffness is always with me.

As usual, day one of the final chemo was fine, but then... who'd have thought there could be so many flavours of tiredness? Degrees, yes - but types?

Over the remaining four days of the course and for a day or two after I experienced a weird series of ups and downs ranging from mildly sleepy to bone-sick exhausted.

At my worst, while I was still popping the poison, I noted that each type of tiredness had a different feel or texture, and wondered if I should become a connoisseur of fatigue and catalogue them here like whiskies. Then I wondered if I might not just be rambling: I was quite tired - at that point a dull little number with a sort of numbing sensation in my shoulders and arms, if you're interested.

That was about three weeks ago. Since then I have had days when I have been alternately energetic and shattered, days like yesterday when I have woken up tired, and days like today where I feel more-or-less normal.

I’m told the after-effects of the chemo could also last perhaps six months. It might not be so long, given my relative youth and strength, but I'm prepared for the days of unpredictable tiredness to continue for a while.

And eventually this, too, will pass.

In the meantime, the trick is to make the most of things even when the symptoms are making their presence felt. Just marking time, looking forward to the end of the stiffness, the end of the fatigue, and ignoring the present would not be healthy. It would be like treating the working week as days to be endured until the weekend comes, the month as time to be tolerated until payday; people do that, but it's wishing your life away, and those of us on the cancer-go-round are a bit sensitive about that.

So I get on with things. I go to work. I make plans to do stuff as I always have and, mostly, I keep to them. I went to see Patti Smith in concert last week and loved it, even though my legs were in agony after the two-hour stand.

Maybe if I were a sporty type all this would be harder, but I play with gadgets and with words, and I don't have to move much for either.

Anyway, most days aren't tired days, these days. It's getting better.

But when they are, I read and write and watch and listen and generally learn new things. Oh, and play obscenely violent computer games - that's a good one. Obviously, all that is as far as concentration allows; the fatigue regularly dictates that I put down the newspaper, Kindle, laptop or handset and just kip. I do resent that a little as wasted time, but it can also be pleasant, so I feel I should just enjoy it.

Here in the Tumourland Fun Park, it's important to enjoy all the rides.

Wednesday, 22 August 2012

Who's gonna drive you home?

Yesterday I popped into the Beatson for a wee bleed and to pick up this month’s bumper bag of harsh chemicals. My last. That’ll be six monthly poisonings under my belt come Sunday, with no more due.

I should have got this round of chemo last week, but my white cells were low and my consultant regarded it as “a bit gung-ho” to dole out drugs which batter the immune system while it was already punch-drunk. So the regular envenoming was deferred for a week, my counts returned to normal, and this morning I took the first of my final five doses.

Feeling fine so far.

I’d like to think it’s my last round. It’s the last I’m scheduled for, and the last I’ll get as long as things remain as they are. If one of my three-monthly scans shows anything tumourly trying to sneak back, I’ll be back on the Temozolomide sharpish, but I’m not planning on that happening. I’ve told it not to.

I had hoped that the end of the chemo would mean an end to the off-and-on tiredness which has plagued me throughout this whole process. I’d reckoned that since it takes a month for me to recover sufficiently between treatments, then a month should be enough to get back to normal.


I’m now told that the fatigue can last up to six months after the chemo stops; it depends on the individual, and there doesn’t seem to be any way of telling how it will hit, other than that younger, fitter patients recover more quickly. That includes me (no, really) so with a bit of luck it will ease off sooner than later. Ideally before I go on holiday.

The other thing I wish would just bugger off and leave me alone is the constant stiffness in my legs and occasionally arms. It’s a bit like the sensation you get the day after a long hill-walk, but all the time (I can’t really compare it to many other kinds of exercise, having spent most of my life avoiding them, but I have been known to enjoy the occasional countryside meander). If I sit still for too long I need to haul myself up with my arms and then waddle rather than spring gazelle-like across the room, as was once my wont. This, I gather, is a side-effect of coming off steroids; they cause some muscle reduction, but also a loosening of ligaments in the back and legs. I’m told pregnant women experience something similar: I’m hoping this is the only symptom we’re going to share; I could do without morning sickness, haemorrhoids or childbirth.

But the really grim symptom of all this is the news that I may not be able to drive again for a very long time. I had previously been told that I would be likely to get my licence back a year after the surgery. That was on December 1, so I was starting to look forward to my licence's return. Counting down, even.

Now I’m told that it could be at least two years, and no-one’s very sure from when. It all depends on when the DVLA (not my doctor, apparently) decides my primary treatment ended, or indeed what my primary treatment was.

If they decide the primary treatment was the surgery (which my research suggests they won't) then it’s another year from December. If they decide it was the radiotherapy and first round of chemo, it’s a further year from mid-February. But if they decide the adjuvant chemo I’m just finishing off is part of the primary treatment, then it’s two years from now. And if I need any further treatment during that period, the clock resets.

This is quite crushing. Quality of life is pretty important just now, and not being able to drive is a massive limitation. Blind 75-year-olds and mental teenagers are allowed licences; what makes me less safe than them?

Well, the huge hole in my brain, apparently. But I have only had the one fit, and that nearly a year ago (it’s how I found out about the cancer in the first place). Since then I’ve had the tumour which caused it cut out, the area around it zapped and poisoned, and I’ve taken anti-epileptics daily. I haven’t so much as twitched in all that time. Surely I’m safe to be behind a wheel?

It seems the DVLA thinks not. They won't even ask my doctors for their opinion, I'm informed; the decision will be made by a government medic who will never meet or examine me, based on some forms which don't contain space for my doctors' input.

I understand the reluctance of officialdom to have people with large chunks of their brains missing hurtling around the countryside in cars. But I'm being checked on very, very regularly. Even now the chemo's over and my monthly trips to the Beatson have come to an end, I will still have three-monthly scans. Surely these could be used as the basis for my continued right to drive, with my licence renewed quarterly every time a scan gets the all-clear? It wouldn't be hard to administer electronically, and it would save a lot of misery for a lot of people in my position.

The next scan is in September. It was scheduled for the 28th, but by the time I got the date I’d booked a holiday, so it was moved forward to the 19th. Which is fine, but it means I won’t get the results until I’m back, so I’ll spend my two weeks in the sun Not Knowing. Looming capitals intended.

Still, it should be fine. June’s cerebral photo-shoot wasn’t substantially different from March’s, and I’ll have just finished my treatment, so there’s no reason to think September’s will show any changes either.

So if it is OK, can I drive at least until the Christmas scan, please? It would at least give me something immediately positive out of the cycle of quarterly anxiety I'm going to have to get used to:  the build-up to each scan, the wait for the results, and the hoped-for relief when they come back clear.

Until they don’t. But that might (just might) never happen, or at least not for years. Until then, I could be driving safely and happily.

Just a thought.

Thursday, 9 August 2012

Stating Points of View...

Dear Auntie Beeb,

Can I call you that? It’s just that I’ve known you since I was a wee boy, ever since Brian Cant was the coolest thing on the telly. It’s like we’re family.

Anyway, you might have heard I’ve not been too well, recently. Just a spot of light brain cancer, nothing to worry about, but it has meant that I’ve been spending quite a lot of time in front of the TV. I get quite tired, you see, and it's as good a place as any to have a slump.

But I can’t say I’ve been very impressed.

I have an established pattern, which is to come home from work knackered, watch the news, have my tea, then fall asleep during the One Show, which you seem to have designed for that purpose. I then won’t surface for an hour or more, until around the time the grown-up telly starts. Unless it’s an Eastenders night, in which case I will wake up to change the channel; these people have voices like Stihl saws and even I can't sleep through that. Our cats are convinced the ’Stenders theme tune goes dum-dum-dum-dumdumdumdum-urgh-bloodyhell-click-zzzzzz.

It’s not the most exotic or productive way to spend an evening, but it suits me. And you’ve spoiled it, Auntie. This summer, there’s been nothing on. Nothing I even want to sleep through.

First there was football, all that Euro 2012 nonsense that Scotland wasn’t even in. You even moved the news for that. You can’t do that: the news is at six o’clock – there’s a law or an old charter or something. Moving it is wrong.

Then there was tennis: Wimbledon, the All-England Lawn Tennis and Croquet Club’s annual knockabout. Tennis is boring and goes on for hours; I hoped for a bit more tension from the croquet finals, but you didn’t even show them.

After that there was golf. Some blokes went for a walk, hitting little white balls in front of them, and eventually one of them was given a claret jug and some money. Whoopie-do, Auntie, whoopie-do.

And through all this, there was the building threat of the Olympics. 

The run-up alone seemed to last most of my adult life.

The torch relay just went on and on and on, and it's not even traditional: the Nazis started it in 1936. And I didn't even bother to watch your rowing drama Bert and Dickie; it looked like a damp Chariots of Fire and I can't help suspecting it was partly responsible for holding up Dr Who this year, which is unforgivable.

I watched the opening ceremony, of course, but I did so on iPlayer, mainly because it has a fast-forward button and I couldn't face three hours of bombastic special effects that night; I went to see The Dark Knight Rises instead. Bits of the Boyle-fest were quite good – it really annoyed Morrissey, for instance – but it did leave me feeling that both Paul McCartney and the monarchy have now had their day.

After that, though… well, the thing is, I don’t like sport, so the Olympics have been a bit of an entertainment dead-zone for me.

Maybe I should explain: I have never liked sport. I know, I know, you don’t understand or don’t believe me. That’s most people’s reaction. Others just look at me like I have just admitted to being a Scientologist or a snail fetishist, or are incapable of processing the information and commence The Football Chat anyway.

I don’t know why I don't like it. I was never good at sport and went to a school at which being bad at games ranked you lower than amoebic dysentery, so that might be part of it. But I suspect it’s because I don't get sport. Don’t understand it. No comprendo.

In my defence, there's quite a lot not to get. Like the scoring in cricket, for instance: I played the game (admittedly under duress) every summer for about six years and I still don't understand that.

Or football. Why is that interesting? The plot's broadly the same every time, it has no soundtrack (well it does, but it seems to consist largely of songs about Irish history and Victoria Beckham's bottom) and there is very little chance of a car chase. Yet I've met people who can barely spell IQ but who can and will talk at massive length about the intricacies of a game in which all I have seen has been some very highly-paid haircuts kicking a ball about for rather longer than seemed necessary.

So the Olympics are just the grand culmination of the general sense of boredom and incomprehension you’ve inflicted on me all summer, Auntie.

Why would I feel involved? Why does every other armchair-bound slob seem to gain some sense of personal achievement from the success of highly-tuned athletes who happen to have been born in the same country as them? What have they done to deserve this vicarious thrill, apart from pulled up the roots their buttocks have sent into their couches and wobbled to the fridge and back? Why are they all so offended when Frankie Boyle Tweets that  Rebecca Adlington has an unfair advantage as a swimmer because she has a dolphin's face? I'm sure Rebecca is a lovely woman and a fine athlete, but she is also a celebrity and uses her media profile to make money; which is fine, but it makes her fair game until she stops taking cash from British Gas. "Eek. Eek, eeek. Eeeeek!", as she said herself, while being awarded her medal and a herring.

Nonetheless, I have watched some of the Games; I haven’t had much choice. But that has just raised more questions.

Why do we now have uneven bars? Is “asymmetric” too difficult a word these days?

Why, Auntie, did you spend so much money moving to Salford, then just weeks later head back to London to broadcast from a glass box balanced on some freight containers? And what’s with the black marble altar surrounded by geometric patterns? Is this so Gary Lineker can boost Team GB’s medal count by raising the aid of a dark, demonic force and interview Bradley Wiggins at the same time?

And what makes Michael Phelps the greatest Olympian of all time? He must be, all your presenters have said so. And yet, while 22 medals is quite a lot, all he does is swim; Daley Thompson had to get blisteringly good at ten sports to get just one of his. And he did it to an Iron Maiden soundtrack. How cool was that?

You don’t need to answer, Auntie. I really just want to know one thing: why is it that, with everyone now receiving digital TV and 24 channels of Olympics available, can’t people like me keep BBC1?

Just in case you change your mind, here’s what I’d like to see on a typical night’s viewing for the rest of the Games:

8.30pm Javelin Catching with George Osborne
Short but sweet. Tune in tomorrow for the Michael Gove episode. And the day after for Culture Secretary Jeremy Hunt. You see where we’re going with this?

8.35pm My Great Big Gypsy Website
Sequel to My Great Big Gypsy Wedding in which the happy couples find their new marital homes on a special mapping app comprising a huge arrow pointing to Jeremy Clarkson’s garden.

9:30pm The Only Way Is Wessex
The casts of various reality shows of the last few years are all put in a house without food, drink or spray tan and not allowed out until they’ve read the complete works of Thomas Hardy.

10:00pm News & Weather
Followed by Reporting Scotland and Newsnight, with proper interviewees who don’t wear Lycra for a living, and no abrupt cut off to the cheap local version until the real one is finished.

11:30pm The Late Movie Double Bill
A couple of old classics back-to-back. Maybe The Maltese Falcon, or Gregory’s Girl, or something from The Godfather trilogy. Not Chariots of Fire.

3:00am All-Star Indian Wrestling
With Dale Winton and Archbishop Philip Tartaglia. This doesn’t actually need to be broadcast, we just need to know it has happened.

It’ll be ratings gold.


Monday, 23 July 2012

Put a peep-hole in my brain…

So I got to see the latest photos of the inside of my head this week. There’s very little going on. You may not find that terribly surprising.

It cheered me up immensely, though. Since no news is good news, and I hadn’t heard anything from the head doctors since my MRI at the end of June, I was pretty confident there would be nothing to report. But it was still nicely reassuring to see the scans from March and June side-by-side and note little change.

There is a slight difference. The newer scan shows a kind of rind around the cavity where my tumour used to be; apparently this has been noticed in a couple of other people who have been on the same vaccine trial as me. I’m assured it’s nothing to worry about since it doesn’t represent any cancer growth. The tumour site is the same size as before, which is the main thing.

So it looks like the treatment is working, which is hugely cheering. Glioblastoma is an aggressive cancer which likes to try to grow a new head when it can, but not this time. Today is not that day. And I’m planning on holding this position for years.

I certainly feel well enough. I'm still unexpectedly hit by fatigue at odd times, but I can deal with that. It accumulates throughout the chemo, apparently, so now the bursts of tiredness caused by the daily zapping I received in the first few weeks of the year are at last receding, they're replaced by seemingly equally unpredictable spells of exhaustion brought on by the harsh chemicals. It’s nice to have a seamless change-over.

My physical signs are good. I feel generally stronger and the stairs to my south-side eyrie no longer seem so excruciating. My platelet count is rising closer to normal, I’m told, and it looks like I won’t need a blood transfusion to fix my anaemia, as was suggested last month. And I've managed to regain the 20 pounds or so I pretty much excreted during that little spell on the campylobacter diet back in May. I'm less pleased with that one: after all that, can't I at least keep the weight-loss?

Still, it was all looking about right, so with no other impediment I went back on the poison on Wednesday morning. And it was OK.

A spot of encouragement for anyone reading this who's heading for the same treatment: it does get better. I've now had five of six rounds of adjuvant chemo and, while it hasn't always been easy going, it hasn't generally been all that bad.

This last one has been fine, or at least a good as can be expected. I felt almost no ill-effects for the first four days of the five-day course, just a spot of tiredness on Friday afternoon. I was knackered yesterday (Sunday) and this morning (Monday) and have slept for most of both days, but that has been all. Given the horror stories I hear of people receiving intravenous chemo, I'm happy with my little exhaustion pills.

Last month's was similarly easy, except the tired days were two and three. May was bad, but that was because the campylobacter got to do me over while the chemo held my immune system's arms – it was unfortunate, but not an inevitability. April was the first on the highest dose – 400mg of Temozolomide daily for five days – and I didn't feel great, my stomach was irritated and I had no energy, but it could've been worse. March, which was at a lower dose, and the six weeks of daily dosing during the radiotherapy in January and February, at a lower dose still, seemed to cause no side-effects at all.

Of course, I still have one to go. I could react badly and have another May all over again, but it seems improbable. More likely is that one of my various levels could drop below the threshold at which I'm allowed to take the last course; but even that seems unlikely now and, even if it happens, there seems to be some doubt as to the value of the last couple of adjuvant rounds. Which is hardly encouraging when you're gearing up for a five-day poisoning, but there you go.

Anyway, that's in three weeks. In the meantime, I'm off the steroids as of tomorrow morning, which is just as well because, although they helped keep my brain smaller than my skull when I needed that doing, they are quite nasty in other ways. Their withdrawal means no more Losec, though, and I  will miss that; it'll be back to the chronic indigestion and chomping Rennies for me, I suspect.

And then, sometime around late September, the next scan looms like a monolith. But it will cast no shadow over the preceding weeks: I'm getting on with stuff. Then we'll see what we will see.

And it will be fine.

Tuesday, 17 July 2012

Sing if you're glad to be second-class

So here’s me feeling all pleased about living in a country where, at least where public transport is concerned, there are no second-class citizens. The elderly, the disabled, young people, and middle-aged chancers who’ve had their licences taken off them just because of a spot of light brain surgery, can all relax in the knowledge of free or discount travel by one form or another across the land.

And then, less than 12 hours after blogging about how nice that is, I pick up The Herald to find one of Scotland's leading churchmen, Cardinal Keith O’Brien, calling for a countrywide vote to declare perhaps ten percent of our population second-class.

The leading celibate bachelor and relationships expert wants, he says, a referendum on the gay marriage issue. And he’d like it before the independence one, please, because providing a legal basis for letting people with imaginary friends deprive another section of society of a right everyone else can enjoy is apparently more of a burning issue than the vote which will either tear our country apart or give us a new beginning in freedom (depending on where you stand on that one).

Ah, but… a referendum. That’s pretty democratic, isn’t it? Doesn’t that mean the will of the people is decided once and for all?

No. It doesn’t. We have a representative political system. The weapons-grade democracy of the referendum is reserved for the really big constitutional issues, such as devolution and now independence. And there’s a good reason for this.

Under a representative system we have elected politicians who make everyday decisions on our behalf, based on a previously-declared agenda to which they sometimes even stick, and every few years we get the chance to vote for the candidates we feel are least likely to bugger all that up. It’s not a perfect system, but no-one has really found a better one yet: a delegative system (such as trades unions use) or even electronic direct voting on every issue would be unworkable on a national scale - pretty soon, no-one would turn up to the meetings or bother to click, and the extreme loonies who did make the effort would be in charge. We’d have the streets lit by burning paedophiles within three months.

People who call for referenda on the smaller stuff are usually not really big fans of democracy - what they really want is a great big apathy or ignorance-driven mandate to do something deeply unpleasant that they can’t get done by normal means. Like declaring homosexuals second-class citizens.

And, make no mistake, that’s what Cardinal O’Brien wants. He wants to deprive an adult, thinking, responsible, voting section of society of a right or privilege extended automatically to the rest of us. Which means he wants the law to say: "You are not as good as us, you do not deserve our rights, you are second-class".

He’s a man you’d think might have a little empathy with at least part of the gay community, given that he eschews relations with the opposite sex and goes to work in a dress. But he’s had a rummage in the Leviticus pick ’n mix, and has adopted the bit which decides that homosexuals are abominations, but not the bit which forbids you to wear a watch. (It’s "observe times", actually: see Leviticus 19:26  if you don’t believe me. The King James version is quite clear.)

Of course, that's true of most flavours of Christianity (honourable exceptions for the Quakers and United Reformed Church, here) including the supposedly democratic, everybody-equal old Church of Scotland. The C of S is normally willing to leave much up to the conscience of the individual worshipper or congregation - to the extent that there is an openly-gay minister in Aberdeen - but perhaps it has been shaken by the recent departure of a couple of ministers and a congregation, the Buchanan Street Bigots of Glasgow's St George's Tron, over that very issue. Whatever the Kirk's reason, it's backing the Catholics on this one and has come out (so to speak) strongly against same-sex marriage. Selectively sifting Leviticus for sin.

I’d thoroughly recommend having a flick through Leviticus, it’s a right riveting read. A bit heavy on the blood sacrifices in the beginning (a lot of bullocks) but it soon gets down to some good solid prohibiting: 'no' to bacon, shellfish and rabbit, 'OK' to locusts and beetles (which must have been a big old "gee thanks" moment for the Children of Israel); 'no' to lighting joss sticks (two priests are immolated on the spot by fatherly old God for that one) but 'OK' to… actually, there aren’t really many more OKs. It’s pretty much "don’t" from there on in.

Of course, the Biblical argument against gay marriage isn’t the only one being put forward. There’s a semantic one, too, that says the word "marriage" strictly means a union between a man and a woman. A lot of people are hiding behind that one.

I've checked a few online dictionaries, and this definition does seem to be correct. But so what? English is a living language, we adapt the meanings of words all the time: "gay" being a very good example. That’s why dictionaries are regularly revised.

The status quo of calling gay unions "civil partnerships" is just not good enough. Less than two months ago, I was married in a civil ceremony with no religious content: the rights and benefits of my heterosexual wedding are barely different from those endowed on a homosexual couple, except that they cannot technically call themselves married, or call each other "husband" or "wife". And that is effectively telling them that in the eyes of the law, their union is worth less than mine, is second-class.

So I'm glad that the Scottish Cabinet decided today not to have a referendum. I'm irritated that they thought the demand was even worth considering, and disappointed that they didn't just go the whole hog and put forward a bill to legalise same-sex marriage in Scotland once and for all, but that should come soon.

And, when it does, it is likely to allow churches to refuse to carry out gay weddings. I'm not so sure about that: it sounds like a reasonable concession towards religious freedom until you try swapping the word "gay" with, for example, "black". But since there are other churches which will do it, and the option of civil marriage will be very much open, perhaps it's enough for now.

One day at a time, sweet Jesus, and all that.

Monday, 16 July 2012

On the buses

One of the plus-points about having brain cancer is that I get a free bus pass (the other is reduced hairdressing costs). It's quite handy: not worth growing a glioblastoma for, but a useful thing to have.

It's mine because the DVLA won't let me have a driving licence at the moment, for fear I should embark on another bout of side-on disco dancing, this time at the wheel. Since I've only had the one fit, and that nine months ago and before the tumour was cut out, I can't help feeling this is a bit over-cautious. But there it is – no more vroom-vroom for me until a year after the surgery.

In the meantime I have a little blue card which gives me free bus travel around Scotland, and some reductions on the Glasgow tube and local trains. Annoyingly, it seems to be the same as the one my mum gets for being a pensioner, but it also looks like a YoungScot card, so I'm hoping people just think I had a hard paper round.

While it's a little odd to be – for this purpose at least – technically disabled, I use it daily. I actually quite like public transport; it provides a great opportunity to catch up on podcasts, do a spot of reading, and ponder the great issues of the day. You know, stuff like: does Tom and Katie's divorce settlement allow him to take the wean to McDonald's on Saturdays as long as he promises not to sacrifice her to his weird octopus god? (For fear of a complaining call from John Travolta, I should probably point out here that I don't actually think the Scientologists worship un-nameable Lovecraftian horrors. I think they're far more sinister than that. )

Of course, public transport has its downsides: the varying condition of the fleet, from the comfy, wifi-enabled buses heading out west to the cabbage-smelling boxes aiming east; other passengers and their fascinating range of personal habits and conditions; happy, smiling Glasgow bus drivers with an interesting concept of clutch control: Wait, wait… right, he's just about half way up the stair… change down hard!

And, of course, the vagaries of city traffic. Just the other - particularly rainy - weekend, an apparently unreasonable attempt to get to Queen Street Station by means of boarding a bus which purports to stop outside it led to a major round trip thanks to "an obstruction in the road" (given the date, I guess this was the Orange Lodges getting their flutes rusty further into town).

"If youse are no' goin' tae the city centre," the driver informed us. "Youse hud better get oaf here."

What luck, we thought. The city centre is exactly where we're going.

We stayed on.

One tour of some of the more exciting parts of the south side and an unexpected trip over the Squinty Bridge later, the driver announced that a patch of pavement-free road under the M8 was now the city centre, and that was where we were all getting off.

As we splashed our way through ankle-deep puddles among fast-moving, rain-blinded traffic to negotiate a way into Anderston Station from the wrong side, I reflected that we were lucky technology hasn't moved on further: First Wormholes wid like tae point out that because of an obstruction in the quantum, youse'll all be getting' aff somewhere just outside o' space and time, from where youse'll huvtae walk tae Buchanan Street.

It also occurred to me that, were I actually properly disabled, I would be in a bit of bother right now - as opposed to just soaked up to the knees and swearing at drivers coming off the Expressway.

Of course, I'm not. And since my haircut is now substantially less medical than before, I don't look it, either. To be honest, I feel a little guilty about having a bus pass; OK, I have a serious illness, but I'm mobile and employed and can afford bus fares. In fact, I'm a little surprised at how readily it's accepted, since I'm clearly over 26, equally clearly (I would hope) under 65, obviously equipped with the standard number of operational limbs and generally self-propelling.

Still, it's nice to live in a country which has decided that those who need free public transport (and a few like me who don't really) should get it.

I wonder if Richard Branson can be persuaded to launch his £128K-per-person near-space flights from Prestwick