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

Tuesday, 3 July 2012

A scanner, loudly

Last week I had my head shoved in the big, bangy machine once more, and I'm now waiting for the photies to come back from the chemist.

So to speak. It was my regular three-monthly MRI, and the first which may or may not give any useful information about how the hole in the head's getting on and, more importantly, if it's still empty. The hole, I mean. Not my head.

I've had a few of these now and they're getting almost routine.

First there's a series of standard questions about pacemakers, tattoos and piercings (no thanks, never wanted any); artificial plates and limbs (just the bits of titanium holding part of my skull on); can we pump you full of tracker dye? (if you must); and do you mind if we stick your head in a great big magnet? (go for it, it's what I came for).

Then it's off  to try on the fetchingly ill-fitting but firmly non-ferrous hospital jim-jams and to have an equally iron-free spike shoved into my vein. This time, as Lou Reed more-or-less sang, things weren't quite the same, because they got the cannula in first time without the usual jagging about my upper limbs which always seems to end up leaving me with multiple stab wounds, a massive bruise round the bit they finally manage to get it into, and a huge wad of ultra-sticky tape across the hairiest part of my arm. At least, what was up until that point the hairiest part of my arm.

Apparently I have very elusive veins which see needles coming and leap out of the way. Which I can't help feeling is eminently sensible for them, but often ends up being a bit nippy for me.

It's odd, because back when I was allowed to give blood every three months, there never seemed to be a problem; although I suppose the nice people at the Scottish National Blood Transfusions Service are vampirising folk all day, every day, and have got pretty good at dealing with all sorts of venous variations. (Incidentally, it really doesn't hurt, so if you feel you can fill in for me now I'm not allowed to donate any more, please book yourself in via They need 5000 donors a week in Scotland alone, and you might well save a life - maybe mine.)

Equally, over at the Beatson's Clinical Research Unit, which has been bleeding me regularly for the last six months in the name of medical science, they're so good at it that I barely feel the needle going in. But everyone else seems to have massive difficulty; from radiographers to registrars to locum GPs, they either seem to have huge problems finding a vein which works, or just have a good old stab away until they do. I've now found out for myself where there are a couple of good 'uns, and I point them out as soon as anyone approaches me with a Venflon.

This time, as I said, nae bother.

So with stylishly washed-out blue jammies in place, tap in arm, and a final check for any old iron, I was off to spend over an hour lying dead still in a very enclosed space.

MRI machines are not terribly comfortable. They're quite narrow, not really designed for the chunkier chap, so once I'm on the table I'm never very sure what to do with my arms – and I become acutely aware that one of those now has a tube in it, and my elbows can touch the sides, and I really have to try to stop thinking about anything being pulled taut as the bench slides back and forward. At least I'm not claustrophobic.

They're also very noisy, although you do get ear-plugs – usually just before the radiographers ask their last-minute questions. You also get a sort of frame thing over your head and then cushiony, spongey things are packed in there round your ears. Apparently this is to keep your skull still in case you fall asleep. There's nothing more disappointing than blurry photos.

And I always do nod off. I've always been able to sleep just about anywhere: in the past, any form of moving transport I wasn't actually driving myself gave me an instant ticket to the land of nod; now I'm an enforced passenger I seem to be getting used to that, but I'm now kipping off  at cafĂ© tables, since my post-radiation/chemo/whatever fatigue, although much improved, is at the moment kicking in around lunchtime.  Being inside a big, thumpy, magnetic tube seems to be equally soporific.

This is A Good Thing, I reason, since I always seem to be in there for absolutely ages: the radiographers give me some sense of time by waking me up via intercom occasionally - I gather to tell me what they're doing next, although it's hard to know thanks to the earplugs; they could equally be informing me of their plan to shave something rude into the back of my now-refoliating scalp while I sleep - but otherwise the tedious process passes pretty quickly.

Then the banging stops and I emerge feeling a bit dazed (since I've just been woken up) and a bit uncomfortable about the cranial scar (since the head packaging is pretty tight) but otherwise fine. Some people, I'm told, feel tense and trapped through the whole experience; others don't like the dye going in at half time. I just sleep through it, and I've never felt a thing.

That was last Wednesday, and I've so far heard nothing from SupaSnaps. Some day my prints will come.

But no news is good news, I reckon, since if the scan had shown anything I'm pretty sure the Beatson would have been onto me sharpish to haul me in for further jabbing and treatment. They react pretty quickly.

Since I've had no update, I'm taking it that I'll get a nice "nothing there" result when I next see the consultant in a couple of weeks.

Just before he tops up my poison levels once more. I'm not there to enjoy myself.