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 www.scotblood.co.uk. 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 café 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.

That went pretty well. Now for the scary bit...

Well, that wasn't at all bad. Sorry to disappoint anyone out there looking for further tales of dehydration and high-velocity gastric horror, but this round of chemo has pretty much gone as well as can be expected.

True, I took a couple of days off work, but that was more through tiredness than anything else. And since I'm told I'm a little anaemic, that's not surprising. I just slept to get through that. Other than that, it hasn't gone badly at all.

As I write this, on the evening of day five of five, I am very tired. But that's about it. I've eaten normally throughout, and none of the threatened nausea has manifested itself this time. No Saharan thirst, no volcanic Simon Cowells. I feel I've had a bit of a result.

This is my third round at the maximum dose of 400mg of Temozolomide a day. Previous rounds at lower doses had no side effects, but my first at 400mg in April hit me quite hard, leaving me tired, disturbed in the gut, and generally knackered. May's was much worse, coupled as it was with a cheeky wee dose of campylobacter, a normally fairly easily-squashed food poisoning bug which the immune-system reducing powers of the chemo allowed in by the back door to flatten me for three weeks as it left violently by the same route.

But this time has been fine. Day One, Wednesday, was no problem at all and I was at work as normal; but that had been the pattern of the previous two months, so I was still suspicious. On Thursday, I followed the chemo-consumer's instructions carefully: up early to take my anti-emetic, wait 45 minutes before popping the poison (the rules say "at least 30 minutes", but I like to be on the safe side), then wait another 45 minutes before eating and taking my usual daily drugs (Keppra and Losec and dex, oh my!); then it was a case of waiting. After another 45 minutes or so I felt a bit shattered and rather unsure of what my innards were planning, so I called in sick. But as it turned out I simply slept for a big chunk of the day.

Friday was much the same. Saturday was better – I went to my cousin's wedding without serious incident. And she did, as promised, donate her favours money to the Beatson - £200, no less, which is a lot of sugared almonds. Thanks Gael, and all the best to you and Robert.

Today has been fine. I was out at the allotment – admittedly sitting in a chair supervising Clare (I love gardening, I could watch it all day) – but still, I was there. I even planted some garlic. The plot's looking great, we're getting some crops in, and there was massive amusement to be had from the shape of some of the carrots. Esther Ranzen realised it way back: give the great British public some campaigning consumer journalism and a singalong and they'll love you; show them a rude vegetable, and you'll stay in work for 20 years. I even made it to my niece's 11^th birthday party and endured a squeal (I believe that's the collective noun) of about a dozen pre-teen girls without relapsing.

So I'm tired now. But it's Sunday night, I can sit and doze in front of the telly. I have no more chemo to take, and I feel pretty good. Tomorrow should be a normal Monday.

There is one more milestone this week. On Wednesday I have to go in to the Southern General for my second MRI since the zapping stopped. This is the first of these scans which may or may not be able to give any useful information about the state of the hole in my head. The first really only mapped out the radiation damage around it. This is the first which might show whether anything nasty is trying to make a return.

I'm a little bit scared about that.

I should put that in perspective… I'm trepidatious, rather than wracked with anxiety. I don't really expect anyone to find anything. First, because it's still quite early to tell – this might be the first one which can show more than the radiation damage, but it might not – and second, and most importantly, because it's just early; people do die quickly from this cancer, but I'm not planning to. I'm relatively young, relatively strong, and I'm aiming for the decades rather than months end of the available scale.

Anyway, I feel better all the time. Bad reactions to the chemo aside, I'm suffering less fatigue, working for longer, and generally feeling that I can get on with things more.

That's got to be good. 

Back on the venom-go-round

Oh well, here we go again. Yesterday I picked up my bumper bag of poisons from the pharmacy at the Beatson, this morning I started taking them again. Could be fine, could be another five days of unpleasantness. We'll see.

I should have begun this round of chemo last week, but it was deferred. My consultant said he was considering that anyway, to give me a chance to fully recover from May's horrors, when the nastiness didn't stop after five days but dragged on for a further three weeks courtesy of a wee food poisoning bug called campylobacter. But when he saw my blood test results, it was decided – although not terribly low, apparently they were below the allowable threshold. No chemo for me that week.

This week I'm much better and up for a good old envenoming once more. I'm a little anaemic, the nice registrar has confirmed, but not enough to put it off further.

It's harsh chemicals time.

It can't, I reckon, be as bad as last time. May's chemo not only burned its own trail of destruction, but kept my immune system suppressed enough to allow a bug I would normally have swatted in a few days get a proper hold to the full extent of its colon-tormenting abilities. I'm back to normal, now – surely I only have the chemo to worry about?

Well, as I said, we'll see.

There is always the chance I'll get through it with no side-effects at all. I'm not betting on that one, but you never know. I had none until I was moved onto this highest dose – 400mg of Temozolomide every day for five days, if you're interested – and apparently you can get used to it.

We'll see.

That would be good. Just as last month's little episode gave me some serious doubts about whether I was going to be able to attend my own wedding standing up, this weekend my wee cousin gets married. Partly because of me and partly because her husband-to-be has recently lost a relative to brain cancer she has decided not to give out favours on her big day but to instead donate the money to the Beatson. It's a generous sum, and I'm very grateful. The least I can do in return is pop along and eat and drink at my aunt and uncle's expense.

But, as I said, we'll see.

Even if I don't just sail through the chemo, with the campylobacter now battered out of my system I should at least expect to be back to normal by Monday. Which would be good not only because I've really had enough time off work recently as it is, but also because the following weekend some friends of mine have also very generously decided to hold a benefit gig in aid of the Beatson at GHA Rugby Club. It's a smallish affair, with only around 120 tickets, but they've already sold a lot of them for a suggested donation of £10 a pop (if it's a donation rather than a price, the Beatson can claim Gift Aid, too). Combined with a bit of a raffle, they should raise a very decent amount indeed – they're aiming for £2000. Colin, Graham, and the rest of The Ginhouse Rocks, I thank you. See their website www.theginhouserocks.com for ticket info and a link to their JustGiving page for the Beatson.

Which brings me to another point. My own JustGiving page is currently sitting at £2550. With the proceeds from the gig, plus my cousin's contribution, we'll be looking at increasing that by quite a lot – quite likely to well over £4000. The sums won't necessarily go through my page, but they will go the Beatson, which is the important bit.

What would be really nice would be if anyone who enjoys this blog - either on puregns.co.uk or especially heraldscotland.com readers – chips in just a little, and we get the combined total up to £5000 this summer. That would be a tremendous result.

We’ll see what you can do. I'm sure you can.

Living the dream

I've been living the dream. Oh, yeah.

Didn't put my heart and soul into getting it, didn't spend my entire life thinking only of it, didn't need it, didn't in fact under any circumstances want it. But I've been living it nonetheless.

Recurring nightmares are a bugger.

This one went like this: I'd have this terrible thirst of mouth-cracking, throat-gumming, Saharan proportions, but I'd also have a pint tumbler and a nice cold water tap, so all I had to do was draw myself a nice, refreshing glass; except when I did, however deeply I drank, my thirst would remain unquenched. I'd drink more and more and more, but I'd just get thirstier and thirstier.

I’d had that one occasionally for years. I Googled it recently and there are all sorts of theories about its meaning. All mad, of course: what it in fact meant was that I'd been sleeping with my mouth open and what I needed was the actual real-life glass of water I keep at my bedside; a quick sip and I'd go comfortably back to sleep. So much for dream interpretation.

Thing is, for a couple of weeks there, much of my waking hours were like that. I had a terrible thirst, but drinking water wasn’t helping much in quenching it; I remained bone-dry and anyway felt a bit too ill to drink very much, or eat anything at all. I was also weak, and tired, and really pretty floored by high-velocity diarrhoea which looked like a petrochemical by-product and left the Simon Cowells feeling like they’d been skelped from the inside. Sorry for that image.

It all kicked off on day two of my most recent chemo, of course, so that would be the cause of that. Not nice, but just another three days, and all would be well…

Nope.

By the following Monday, after a pretty rough weekend, I’d been off the chemo for 24 hours, and if anything felt worse. Tuesday was no better, and Wednesday wasn’t too great either. This was getting a bit worrying, partly because I wasn’t certain the human body should be able to pass that much effluent without having first taken anything in, but mainly because I was getting married on the Friday and felt I should probably be there for that.

I was trying manfully to pull myself together with the aid of groaning and Imodium, set in long periods of inactivity punctuated by very short bursts of extremely urgent action, but Clare did the sensible thing and called the Beatson, who told me to keep taking the Imodium but to get to my GP for blood tests, and start taking this stuff called Dioralyte which apparently rebalances your sugars and salts and lets you rehydrate. Marvellous stuff. I instantly stopped being thirsty for the first time in over a week and felt so much better.

So we got married, you’ll be pleased to know, without incident. My innards decided to forever hold their peace, which was nice of them.

It was a lovely afternoon: just us, our parents and siblings plus a registrar in one of Glasgow’s plusher West End hotels (true, most of us are southsiders and some from Lanarkshire, but we got a special visa as long as we promised to go back again). The whole ceremony was over in about 15 minutes so we could get down to the important eating and drinking part from lunchtime. It went well.

Marriage wasn’t necessarily something we’d thought we’d do; Clare for feminist reasons and me because I had no desire to seek validation for my life choices in the dubious eyes of the state or the non-existent eyes of God. But it suddenly seemed right, so we just did it anyway.

I didn’t really pop the question; in fact Clare did. Just after midnight on the 21^st floor of a Gran Canarian hotel overlooking a concrete skate park, on a balcony with a pretty low balustrade and the light behind her. I felt I should say “yes”.

So I did, and we did it. We’ve been married a fortnight now and it’s great. We’ve already had a luxurious night at Marr Hall at Bishopton, and there will be some kind of honeymoon and a belated stag do later in the year.

I’m feeling a lot better, too. Not entirely back to normal – I lost more than 20lbs very quickly through this particular experience, and that takes its toll, even on those of us who can afford it – but pretty much. Seems I had some kind of common food poisoning bug on top of the usual chemo horror, and it’s running its course.

Which is good. Because I’m back on the anti-cancer poison from Wednesday. Wish me luck.

Keeping it real...

I may have mentioned in passing that I've been receiving quite a lot of excellent medical treatment over the last few months...

Proper medicine, I mean. You know the thing: carefully worked-out treatments, tested on scientific principles, applied by highly-trained health professionals. Stuff that works.

OK, some of it is a bit harsh and has left me tired and occasionally feeling quite sick. But since it is also stopping me from dropping dead from brain cancer, I have to wholeheartedly regard it as A Good Thing.

But there is also the other kind of medicine, which ain't.

I was obliquely warned about it, back when I was diagnosed and my programme of zapping and poisoning was being explained to me: one of the nice medical professionals at the Beatson mentioned that I would come across alternative treatments, including homeopathic ones, and while I wasn't explicitly told not to pursue them, I was warned that they could be very expensive and told I would already be getting the best treatment available from medical science.

The implication was very much: "Don't waste your money and time, and our efforts, on such witch-doctoring. Stick with us, we'll look after you".

And I was more than happy to do that. In fact, at the mention of homeopathy in particular, I was keen to stress that I already had a water tap in my flat which provided all the useful drugs present in any homeopathic treatment. Which would be none.

The nurses and doctors in the room at the time seemed quite pleased about that. I wonder if it galls them that just yards away from the centre of clinical excellence which is the Beatson, there is the Glasgow Homeopathic Hospital, and both are funded by the NHS? That while they're saving the very, very ill with bleeding-edge science, often very expensively researched right there in Glasgow with hard-fought-for funding, just across the car-park someone else is handing out stuff which chemically can't contain the active ingredient it purports to but which has been rapped on the packet with a bit of leather?

It bugs the hell out of me, certainly. I'm not alone in this: a couple of years back a Parliamentary Select Committee even recommended that homeopathy should no longer be funded by the NHS  - there's a very good argument for why it shouldn't on Richard Dawkins' website if you're interested. The committee's recommendations don't apply in Scotland, though, so in the meantime we keep funding a whole hospital dedicated to the dispensing of stuff which we know works no better than placebo - only because, as far as I can gather, it became popular after some of the more bonkers members of the Royal Family expressed an enthusiasm for it.

At least the rest of the assorted quasi-medical toss out there isn't funded publicly. Which is good, because there's a lot of it.

I see it like this...

On the one hand, we have medicine. This is stuff which has been found to work over the years, then adapted, refined and tested until it works better. Some of it is still being tested, which is why I go for an itchy jag in the thigh once a month as part of a clinical trial; just doing my bit.

On the other hand, we have herbalists, the memory of water, non-contact massage, energy sources, chakras, crystals, chanting, and dried bits of endangered species - I have no idea why they have to be endangered, but apparently powdered scrotum is much more effective when it comes from a tiger rather than, say, a sheep.

Some of this stuff has been tested and been proven to be nonsense, but most of it hasn't because that would mean someone somewhere might have to stop charging people for it.

Dara O'Briain put it well: "Herbal medicine has been around for thousands of years. Indeed it has. And then we tested it all. And the stuff that works became 'medicine'. And the rest of it is just a nice bowl of soup and some pot-pourri."

But it is often more sinister than that: starting with the ground tiger 'nads, via African witch-murders, to this week's horrifying story that South Korea has on various occasions seized a Chinese-originated "drug" apparently made from dried human foetuses or possibly even dead babies, which people take as a stimulant presumably until in a flourish of natural justice they drop dead from one of the many nasty things contractible from cannibalism.

Fortunately, in this country the consumption of non-medicine is mostly just silly people dabbling in the likes of reiki and ear-candling because of some sense that all that conventional medicine is full of chemicals and they should really be taking something natural and ideally foul-smelling (as well as the conventionally-prescribed chemicals, if they have any sense left at all - well, you never know, they might just help the pebble-clutching work). It's mad, of course, but it's their choice.

Which is important in a free country. But in order to make a choice, we need to be given proper information which we can understand. We need our doctors to tell us what the stuff they're giving us is for and what effects to expect. Mine have been very good at this.

We also need our alternative therapists - if we really, really must go down that route - to tell us the same about their particular flavour of snake-oil. So it needs to be analysed and labelled with all the rigour of real medicine, so that at least if someone is deranged or desperate enough to put it in their mouth or other orifice of choice, they know in advance that it has this, that and the next chemical in it, in these quantities, which will react adversely with that, this and the other chemical they might also be buying or even getting off a real doctor with a degree and everything. And thus they’re fully informed that the combo may well make their spleen leap up through their neck and try to throttle what passes for their brain.

Not unreasonably, the EU decided last year that if you want to flog herbal remedies within its boundaries, you should give people that information: which means test the remedy, label the remedy, and get the remedy licensed. And you should bear the cost of this because it is, after all, your business from which you wish to make money.

One result of this Euro-tampering, reports are at least implying, has been the provisional liquidation last month of the grand old Scottish herbalist Napier's, some 150 years after its first shop opened in Edinburgh.

I admit it is sad to see a small business fold, and such an old one at that. But 150 years ago we had no antibiotics, we barely had antiseptics, and the available anaesthesia was reasonably likely to be a mallet. Doctors were also something of an expensive proposition, and people were still licking willow trees when they had a headache. The local remedy shop probably had its place.

Now, though, in this brave new world of face-transplants, anti-retrovirals and stem-cells, we don’t really have the same need for such places. Particularly not if the remedies they offer include shoving a burning wax tube in your ear to sort out sinus pain. If there is a place for such institutions in the modern age, then it's surely to provide harmless relaxation and beauty treatments, not to dish out drugs or make any claims at real therapy. We have a health service for that, even private health insurance if you must.

If there is still a treatment need which can only be met by a patent powders shop, then that's because there's a hole in the NHS, a wonderful institution but not one which has escaped perforation over the years.*

I can think of one such. For the last 20 years or so, I have suffered from acid indigestion. It is undoubtedly diet-related - I know that rubbishy bread brings it on, for instance, while a nice loaf won't - but since some things cause it sometimes and not others, I've never established a definitive list of don't-eats. About six or seven years ago I took it to my then-GP, who did a blood test for a bacterial cause. When that came back negative, the NHS would go no further, or at least that bit of it wouldn't: I was told that testing for food intolerances was something the practice just wouldn't do but Napier's would, although it would take some time. I considered it but went to the chemist and bought some Rennies in the meantime, and never got round to it.

Anyway, some years later I rather fortunately contracted brain cancer, which meant I needed radiotherapy, and therefore steroids to keep my brain smaller than my skull, and therefore Losec to stop said steroids from eating through my stomach lining. That cleared up the burn no bother - I now laugh in the face of petrol station sandwiches.

Besides, the holes in the NHS are few and far between, at least here in Scotland. Next Tuesday I will pop into the Beatson once more to give them a huge quantity of blood, in exchange for which they will give me some cytotoxins which will stave off, at least for the time being, any thoughts my cancer might have of making a comeback tour of my right temporal lobe. And I will go gladly and in gratitude for a system for which my grandfather’s generation fought and voted and have left behind them for me to use, even though the treatment itself will make me feel quite sick.

Although perhaps not as sick as I feel when I see the Glasgow Homeopathic Hospital on the way in.

*Note to my US readers - and, yes, I do have some - this wee hole in the NHS doesn't mean that what you insist on calling socialised healthcare doesn't work: it just means that, like lots of things, it breaks if you screw about with it. Real tax-funded universal medical care would mean these little gaps in the service wouldn't exist, and our teeth would be as shiny as yours, too.

Just for the record...

Right, well, that could have gone better. Last week I was waxing lyrical about my gentle chemo regime, how as long as I stuck to the procedure carefully it would wing past without side-effects and let me go about my day. And it did, on day one.

It was just days two to six (of a five-day course, I should add) that I spent flopping about the place, feeling alternately shattered and pukey: I’ve had such a lovely week. It really irritates your stomach, that stuff, when you get to the high doses. I’d hoped to get away with it because I’d had no real side-effects from the previous courses, but this one seems to be at the level which hits me. Ah well. At least I was warned.

It’s important to have all the information at your fingertips, even if there’s not much you can do about the queasy inevitability. Which is why I was delighted to read this week that Edinburgh’s Western General is giving prostate cancer patients CDs of their diagnosis.

Now, the bit where a nice doctor sits you down and tells you that you have cancer - at whatever end - is perhaps one of the worst moments in your life. It’s hard to imagine a happy circumstance for it.

So in many ways this is a surprising CD to want for the collection (although I do have this disturbing mental image of black-clad teens sitting round by candle-light: “Yeah, listen to this one, man… he’s told he’s got myeloma, and he like, totally breaks…” - except it’s on a CD, so they wouldn’t know what to do with it).

But I do wish I had one of mine. These CDs are an excellent idea. It's a shattering moment, and there is no way you can take in all the information you’re being given. When you get that news, adrenaline punches you in the neck, the blood in your head starts to roar, and a voice starts screaming “I’m dying! I’m dying! I’m dying!” very, very loudly. It’s hard to take stuff in with that going on.

I don't think I did badly with mine, but I got the information in stages, from “you’ve probably got a brain tumour” through “yep, that was a brain tumour in there”; so when they got to the post-biopsy “OK, this isn’t good…” I was getting used to it. I snapped into a kind of interview mode, asking a lot of questions, possibly a little aggressively, and got a lot of information. I think I retained most of it.

But I didn’t take notes or anything. I know, I know, some bloody journalist. So all that vital information is just washing about in my (now slightly reduced) grey matter. An accurate record could be very useful indeed.

I wrote quite extensively at the time about the problem of not only assimilating all this information but passing it on, wondering how other people manage (see Results Now In and Breaking The News Without Bending It).

It bothered me that while I have had a long career gathering and breaking the news - or at least scraping it together and damaging it slightly - other people don’t have that experience, and that to dump all that raw steaming information onto them without the chance to put it into context was really rather cruel.

When my news was broken to me, my partner Clare was there with me. Here’s what I wrote at the time:

Even as I was hearing the unwelcome tale for the first time myself, I was aware that Clare wasn't necessarily getting the same story.

We were handed a lot of information on Wednesday morning, but there were two pieces which stood out:

1. People with my condition have lived for just months or more than a decade.

2. The average life expectancy for my condition is around a year.

Just as I was thinking of the first that if a reporter had handed me copy with such a broad statement in it I would have chucked it back at them for clarification – not least to define "more than a decade" – Clare was murmuring, "even ten years isn't enough". And with the second, while I was thinking, "Who's in the spread? Lots of 75-year-olds? People with huge, deep-seated tumours?" she was hearing, "a year".

I should point out that Clare has years of healthcare experience and so is at least as capable of  assimilating this kind of information as I am. She has just reminded me, for instance, that there was a medical student observing throughout - I'd forgotten all about that - but the whole situation was staged so much as if we were being delivered very, very bad news that the two of us focussed on different things, effectively coming out with different stories. 

By the time we’d got home, and certainly by the time we had begun to tell people, we both had it all in context. But if we hadn’t had the facility to do that, a CD of the diagnosis could have been very, very useful.

I know a lot of people wouldn’t want to play it. I understand that. I think it might be helpful if they did, at least once, but I understand why they wouldn’t want to. Equally, I can see others playing it over and over again, looking for loopholes. I think I might have done that. A little creepy, perhaps, but at least you’d have all the information.

If that information is “you have six months to live” that’s not perhaps much help. But with a cancer like mine, which is incurable but controllable at least for a while, knowing the details is vital. Because if you can focus on the positive - that it is controllable, that people have lived with it for more than a decade - then you can keep the negative stuff at bay.

And that’s almost all the battle.

Your poison running through my brains

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

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

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

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

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

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

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

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

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

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

Ideally a lump-free one.