Wednesday, 30 November 2011

This is going to sting a bit

Mainly getting up at 5.30am. That’s going to hurt. I’m aware of the theoretical existence of 5.30am, but I’ve always tried my best not to prove it in any practical way. But I need to be in the neurosurgery ward at the Southern General for my little adventure in trepanation at 7am, and I would like to arrive clean and relatively undazed, so a 5.30am start it is.

Without coffee, too. That’s going to knack quite a lot. I’m not allowed as much as a glass of water from 2am, so the daily kick-start of an industrial level of caffiene is out. But since that’s because having a tube shoved down your throat can make you throw up whatever might be in your stomach into your own lungs, I’m probably going to do what I’m told for once.

Tubing is apparently going to play quite a big part in tomorrow’s proceedings: both ends, in and out, one for air and one because, well, this all might take a while.

Still, I’m not going to be aware of any of that. I was initially told that I might be conscious through the operation, since there are no pain receptors on the brain itself and it sometimes helps the surgeons to be able to prod stuff and ask you if you can still make your leg twitch or if you can see the fairies yet. And a couple of the brain surgery stories I’ve been told recently have involved the patient being awake; one apparently babbling about cars throughout, and the other cheerfully watching bits of her own brain being carted off for biopsy.

I was at first much more comfortable about that than about allowing myself to be gassed - I may have a slight control issue in my personality, please feel free to discuss - but as the event gets closer I’m now thinking that completely out for the count is the way to be. I will apparently be laid down on my left side, with my head clamped tightly in position (which will also, I’m told, leave pin-holes front and back, just as a little bonus injury) while they make an incision in the shape of a horizontal question-mark over my right ear, peel back the flesh, drill a couple of holes, and use them to get the jigsaw in to whip out a section of skull. It was the thought of the bone-saw and burning smell you get at the dentist that changed my mind firmly in favour of general anaesthetic.

Assuming they get on with things quickly, it should only take a few hours to have a scrape around, re-attach the osseous trap-door, and stitch things up. I should be awake and complaining before long, and be able to have Clare in to visit in the evening. Then it’s back on my feet the next morning, they say, although I will be in for a few days of observation.

I’ve had a few more messages from people as the operation looms, and they’ve as usual been cheering and illuminating. One was from an old school friend who suggested, “I think you’ve missed a trick on the prayer front. You could have said, ‘Thank you for your prayers. God responded and you’ve to send me a hundred quid’.” Which is still an option, incidentally. Another was from a woman I didn’t know well at school, but who sent a wonderfully strong note about her own three-year battle with Hodgkin's Lymphoma which rather puts my own minor inconvenience into perspective. It did give me a little pause for thought about being quite so glib about cancer, since some of them are really so very, well, big, and mine is pretty trivial by comparison (and, as I’ve said, might not even be cancer). But she did say my blog had struck a chord and didn’t seem offended, so I still think I’m doing the right thing here.

I’ve been trying to update this daily, but it seems unlikely I’ll be able to add much tomorrow; not least because I understand the medical profession gets twitchy about people operating their own personal area networks near their delicate machinery. But I’ll try to update when I can safely get online without inadvertently switching anyone else off.

Over, but not out. I’ll keep you posted.

Tuesday, 29 November 2011

Feeling groovy

I’m currently deriving a huge amount of amusement from the adverts on this page.

I slung the Amazon sidebar on because I already had an affiliates account and - well, you never know - someone might spot that perfect Christmas present while enjoying a light read about brain cancer, click through and make me 27p. But it has proved to be quite the little funster in itself.

These ads are sort of intelligent, they work by trying to match the rest of the content of the page to available goods which readers of that page are most likely to want. My favourite recommendation so far has been for Kylie’s Can’t Get You Out Of My Head, although Photographic Print of Trephination, 1593, (also available as a jigsaw) is a close second. These ads change all the time to best fit the content, so I’m now checking back on my own blog every now and again for new gems. It doesn’t work all the time, Palliative Care Consultations in Primary and Metastatic Brain Tumours has been less gigglesome, and I actively blocked Noel Edmonds’ vile output on the grounds of taste and decency, but I am enjoying many of the recommendations hugely.

I’m not entirely sure why I’m deriving quite so much pleasure from this. It could be the steroids, but I do feel a certain sense of enhanced appreciation at the moment which makes small joys somehow more crystalline and perfect, and that goes for all the nice messages people have been sending, too: from the email this morning from an old friend who took the advanced god-bothering course some years ago and who has informed me that he is going to pray for me despite my expressed opinion on the subject (or yah-boo sucks as I believe it is phrased in the King James version); to my cousin messaging that, in her mother’s considered opinion, I don’t have a brain tumour but a toffee she remembers me shoving in my ear when I was five - and if it does turn out to be that, can I pass it on so my aunt can prove herself right?

In fact, I feel pretty good in general. Not exactly happy or content, since some pretty horrible things have happened recently, but balanced, clear, receptive and aware, without much of the usual day-to-day fog of routine and ennui. It’s quite an odd but not unwelcome sensation. Obviously, I would like to make it clear that while appreciation of life is fine, if I do start to slip towards sentimentality I would like someone to come round and beat me with sarcasm for my own good.

Steroids aside, I suspect my general well-being has a lot do with the fact that I’m in no pain or even discomfort, which has left the whole business still all a bit theoretical. I have so far been pretty much free of symptoms other than the initial impromptu horizontal disco-dance I did on the office floor back at the beginning of October which prompted all the medical investigations that revealed my little cranial cohabitee. That was more embarrassing than anything else; I’ve always been a terrible dancer, even upright. I have also had a couple of minor but odd visual effects - including a very disconcerting 30 seconds of perfect double vision last week - but that’s been about it.

There have been a few incidental sair yins along the way, of course. The fit caused me to bruise or crack some ribs, which meant I had to sleep on my back for weeks, but that’s completely cleared up in the last few days (thanks, steroids). And there was the sensation of lying in an MRI machine having cheerfully agreed to being injected with a tracker dye, listening to headphone-fed soft rock overlaid with the sound of a radiographer muttering about my veins keeping collapsing while stabbing away regardless; I’d be a crap junkie. And then there was the cannula for my blood tests last week - the needle didn’t bother me in the slightest, I give blood every three months so I’m used to it, but the medical answer to duct tape they used to hold it in place perfectly defoliated my previously-luxuriant upper arm more effectively than napalm, and with a similar burning.

Still, so far the worst part has in fact been the driving ban. One little fit and they shop you to the DVLA, then it’s no more vroom-vroom until they say you can, which is a pain.

Obviously, in about 36 or 40 hours someone will be drilling into the side of my head, which is going to sting a bit. But despite a certain trepidation, I’m kind of looking forward to getting it over with, and my little steroidy chums should have by that time ensured that there’s no nasty swelling or anything in there to make the surgeons’ job any more awkward. As Clare has just put it, “Make sure you have an immaculate brain - I don’t want them thinking we’re common”.

Monday, 28 November 2011

Breaking the news

So how do you tell people you have cancer? I've been breaking the news for years - or at least damaging it quite badly - on a professional basis. But this is a bit of a shocking thing to say, something you kind of want to work up to; take the indirect approach. The question is how?

2 Across: In your loaf, it sounds like a grain bloomer (5,6)

Multiple choice?
Which of the following has brain cancer?
A: Me
B: A razor clam
C: Alesha Dixon
Candidates should bear in mind that of options B and C, one has no discernible brain and the other is a shellfish.

Or just playfully, for the kids?
"What am I? My first is in chemo but not in radiation; my second's in absolutely terrifying bloody lump, and also in trepanation; my third is in neurosurgery but not in ‘just have a Lemsip, you'll be OK’..." And so on.

Nah. Probably best just to come out with it.

Fortunately, I didn’t have to tell my partner Clare, since she was in with me when the neurologist broke the news that I would probably need brain surgery. Tower of strength that she is, she took the whole thing very calmly, simply holding my hand as we walked down the steps from the peeling wooden hut that houses the Glasgow Western’s epilepsy unit and murmuring, “Well, it’s not rocket science...”

Telling my parents, though, was hard; especially since my immeasurably beloved gran had died just hours before I got my own news, and I felt my mum had probably enough to deal with. I actually considered not mentioning it and just turning up with a scar and an asymmetrical haircut, but Clare persuaded me that wasn’t really very fair. So I got it out with a mumbled, “Um, got the MRI results, small brain tumour, completely treatable...” and they coped, because they do, and they told my sister, who also coped. We’re a resilient bunch.

My boss got an email, because I had to explain why I was suddenly taking a couple of days off work, and I rattled through the “small brain tumour, completely treatable” routine again for my staff when I got back to the newsface.

Telling friends. That one was awkward. I didn’t really want to make a lot of phonecalls, even on the off-chance that a few hours on the mobile might just fry the thing out in advance of surgery. I emailed a couple with a “here’s the thing...” sort of a message, but stopped because I realised the whole business was going to turn into an unpleasant early run through the Christmas card list, and I’m going to have to do that anyway pretty soon, and just doing a round-robin seemed a bit inappropriate: “This year started well with a hangover, Clare moved in in April, we saw Roger Waters in concert in London in May, we got an allotment, had a couple of great holidays... oh, and I was diagnosed with what’s quite probably a brain tumour, bit of a bummer, but nothing really to worry about.”

Which is why this blog has come in kind of handy, really. Apart from an excellent opportunity to have a giggle at something people just don’t seem to find all that chortlesome, it has meant I could just post the link to Facebook, Google+ and Twitter, and sit back and let the wonder of social networking do the rest.

I’ve had a lot of very nice responses, well-wishes, and shared stories. An old and close friend who had his own cancer scare a few years back called to pass on his thoughts and prayers (I guess he hasn’t read last night’s post, but the sentiment is appreciated). A friend and former colleague who has also had his brain medically prodded called from his current base in the tropics to send his reassurances, although briefly because “this is costing me a fortune and I don’t like you that much, anyway”. Another friend passed on his best wishes and news of his own forthcoming medical circumcision with the complaint, “here’s me about to have half my cock off and you’ve just got to go one better, haven’t you?”

People are great. The problem is, though, that since I’ve posted the links they’ve started reading this - I’ve had a surprising amount of traffic since last night. So far this has been all a bit of a one-draft, stream-of-consciousness, post-and-abandon sort of an affair without much planned style or artistry and a shameless reliance on a bunch of elderly bad-taste jokes. If I’m getting an audience, I might have to start thinking it through a bit and, you know, writing properly.

This could get like work.

Sunday, 27 November 2011

With a little help from our imaginary friends

People have been praying for me.

I find that rather humbling, because I take it to be a genuine attempt to do something positive about my condition, even though I don’t for a second believe that asking your imaginary friend for help is really very practical when put beside, for instance, neurosurgery, chemo and radiation, all of which I can have, as required, from the definitely not imaginary NHS.

I don’t feel any self-pity and I don’t expect pity from others, but good wishes are more than welcome. Christopher Hitchens, in his moving yet witty announcement in Vanity Fair of his own much more serious cancer, wrote, “To the dumb question ‘Why me?’ the cosmos barely bothers to return the reply: Why not?”, and he is, of course, completely correct. But I appreciate the well-wishes of the faithful, and accept them as just that.

I might equally ask “Why not Noel Edmonds?”, but even I can’t stretch my sense of humour into wishing cancer on another human being, even in jest; though there would be a certain irony in the whole thing after his mindless public vomiting about the nonsense that is cosmic ordering. Anyway, Edmonds is merely an annoying fool, which isn’t by any stretch a capital offence. Not like apostrophe abuse or multiple exclamation marks.

Besides, it would be an equally dumb question with the same not-even-shrugged answer.

As I have stated before and will keep stating, I am not going to die. Not any time soon, anyway. I’m 43, and people of my generation are already ten years younger than our parents were at the same age, if you see what I mean: barely middle-aged, just as our parents at around 70 are not the oldies that our grandparents were at that time of life. I’m youngish and fit and healthy... well, I'm youngish and healthy, anyway, apart from the obvious, and I plan to breeze through this whole thing. I'm going nowhere for the time being.

That, I’m truly sorry to say, probably can’t be said for Hitchens. But at least he seems to be spending his remaining time kicking and screaming as always and not hedging his bets in any way on any kind of afterlife. I’d like to think that I’d have the same resolve in his position, but I’m aware of the strength of what Richard Dawkins described as The Virus of Faith, and I’m hoping it’s not still lying dormant from that dose I had as a child.

I’ve described myself as an atheist for some years now, although for most of my adult life I used the more mealy-mouthed term agnostic. The shift was more for descriptive accuracy than anything else: while I don't know there is no deity insofar as I can't disprove one's existence, the utter absence of any evidence that there is one means that I feel that my position is more accurately described as without god than as not knowing about him/her/insert-appropriate-pronoun-here, m
uch in the same way I cheerfully knock on with things without Santa. But it did also reflect my increasing disturbance with the various horrors committed daily in the name of religions of all flavours, and a desire to be much more among the antis than the apathetics. This doesn’t mean I have any desire to attack well-meaning religious people, I just disagree with their beliefs (admittedly often bitterly when they are a shell for prejudice and persecution) and think it’s a shame they waste their short, precious lives on them.

I don’t mind offending them, though. I don’t seek to do it individually - well, maybe sometimes for a laugh - but collectively they're fair game, so if anyone knows any good blasphemous jokes, then bring ‘em on.

My personal favourite - Christ on the cross: “Peter, Peter, cut me down... feet first, you stupid bastard!”

Happy Sunday, folks.

Saturday, 26 November 2011

Putting the 'umour back in tumour

So why try to be funny about cancer? A tumour isn’t really a very amusing thing, unless perhaps it’s shaped like a willie. That would be quite funny.

Well, OK. But why be miserable about it? It’s already intrinsically a miserable thing for millions of people, why add to the horrible pile?

Besides, I confess a certain advantage here: I’m not going to die. Some very highly-skilled people are going to get this thing out of my head and possibly put me on a course of harsh chemicals to mop up the residue, after which life will return to normal. I’ll have a scar and possibly less hair, but that’s really pretty trivial. Had I been told it was terminal, I might not be so upbeat about the whole thing; I’d like to think I’d be able to be as balanced as the inestimable Christopher Hitchens is being about his very likely fatal stage four oesophagal cancer - he’s fond of pointing out that there is no stage five - because life is precious and short, and it thus seems important to try to enjoy as much of it as possible, or at least to bear it in the least unpleasant way you can. But I don’t know if I would. I’m not particularly keen to find out.

When I went into the Western General last week to be told that my MRI had shown that I pretty certainly had a brain tumour, I was also told that if I felt anxious my GP could give me temazapam to deal with it. But even in the immediate horror of being told I had a rogue lump growing in my brain - and I’m very fond of my brain, I really don’t like the idea of something eating away at it - I knew I wouldn’t. The recreational possibilities of a ready and legal supply of jellies aside, I’d much rather experience life. It’s generally pretty good, I don’t want it fogged out.

A few nice people have told me I’m being remarkably calm, even accused me of bravery. But I don’t think it’s particularly brave to be faced with the inevitable. Bravery is doing something anyway, in full understanding of the risks and with the opportunity to walk away, because it’s somehow worthwhile. It’s a choice. This is merely inevitable: I’m going to have this operation because I have no choice other than not to, which would be a ridiculous decision to make. I’m doing the easier thing, and it’s the better course. So let’s get on with it. And I will remain calm because it’s illogical to spoil the period between now and then with futile anxiety and fear.

People are good at making that easy. A friend emailed to suggest that “if they do scrape some of that towering intellect of yours out with the tumour” would I fancy swapping my new Android tablet for some of his infant daughter’s wooden blocks? “They are nice and coloured and come in a box with teddies on, you'll love em.”

The world is full of horror: depression, abuse, unspeakable selfishness, futility, oppression, random catastrophe and Noel Edmonds. And yet it is also full of beauty, humour, love, entertainment, fascination, wonder, and the great old gag in which you’re asked what you’d do when you’re trapped in a room with Hitler, Stalin, and Noel Edmonds and you have only a gun and two bullets (you shoot Edmonds twice).

At the end of Blackadder Goes Forth, the so often unfairly maligned Ben Elton and Richard Curtis gave us one of our finest moments of British comedy. The guns stop, but the gags don’t quite, although they become bleak. Inevitably, the whistles blow and the characters have to go over the top. It doesn’t end well for them.

It may be that on Wednesday night, when I have to stop eating and drinking and eventually try to get some sleep before heading for surgery the next morning, I will be less cheerful. But I have a well-trodden and expertly-guided path through no-man’s land, and I fully expect to be in Berlin by lunchtime. So let’s keep joking.

Friday, 25 November 2011

I need this like a hole in the head...

I am, I'm afraid, one of the few people who needs a hole in the head.

I have a brain tumour. Not a big one, not a deep one, not a snarly one with teeth and tentacles biting and twisting into the delicate fabric of my cortex. But a brain tumour nonetheless.

At least, it’s probably a brain tumour. I’ve had three different flavours of scan, and at least two of them seem to suggest very strongly that there’s an inch-long cancerous lump on my right temporal lobe. But it could also, apparently, be a bit of esoteric swelling or a clump of exotically-tangled blood vessels. I’ll know for certain next Thursday, December 1, when the nice people at the Southern General cut into my skull and have a rummage.

The first door opening on this year’s advent calendar is to be in the side of my head.

I should point out that even if it does turn out to be a brain tumour, things could be a lot worse. Apparently it’s peripheral, near or on the surface of my brain and so easier to get at and get out. And being on my right temporal lobe, and me being right-handed, it’s well away from all the stuff which when prodded makes one dribble.

Speech and language are on the left of the brain for the right-handed; the right temporal lobe is for us reserved for such esoterica as finding our way around buildings and the order in which we put on our clothes. Since I outsourced my limited sense of direction to GPS some time ago and don’t care much about my order of dressing as long as it’s not boxers last, it looks like the potential for damage is limited. There is memory on the right side, but too deep to be touched by this op.

Best case, according to the eminently confidence-inspiring neurosurgeon I spoke to this week, is that she can “get under the edges” of the thing and wheech it all out. If that happens, I might not even need chemo. Which would be nice.

Of course, the worst case...

But best not to dwell on that. They do these things every day, these days, and they’re very good at it. They have shiny machines, many of which go ‘ping’. I like shiny machines.

So I prefer to look on the positive side. I’m about to have my head opened: this is not an everyday occurrence for me, so I want to make the most of it. I’m thinking upgrades here. What can I have put in?

More memory would be good. Maybe an SSD. And some kind of co-processor so that I can do calculations subconsciously. I thought about an internet connection, but I’ve seen a great deal of what’s out there and I don’t want a lot of it in my brain, so I think I’ll keep filtering that in via my more traditional interfaces for now.

Bluetooth would be great, though, to let me listen to media from my phone without headphones. There is, as I'm sure we're all painfully aware, a simpler way of doing this, but I’m not as enamoured with my own tastes as the teeny tracksuits whose epitome of entertainment is a public broadcast of JLS through the tinny speaker of a spangle-coated Nokia on the 57 bus. I just don’t see Radio Four working that way. Come to think of it, I do quite like having my ears plugged on public transport. Maybe not Bluetooth, then.

One of my friends suggested HDMI, as it would be great to watch memories on the big plasma, but I’m thinking of wi-fi for that, so I can stream it through the XBox360 without cabling. And maybe a SIM card and radio so I can download Kindle books and read them behind my eyes.

All other suggestions gratefully received.

There are other, some may say more practical, up-sides.

If I do need chemo, I will save money on haircuts. I’m already on steroids, which are supposed to make you feel great, although I’m waiting for that to kick in (they may be being offset by the anti-epileptics, which can make you drowsy). Also, the metal plates they use to re-attach the section of bone they’re planning to jigsaw out of my cranium should be quite entertaining at airports, and may allow me to wear fridge magnets.

And I get quite a lot of time off work.

There are, of course, the outside chances of stroke, some kind of MRSI-flavoured sucking abscess, or not waking up from the anaesthetic, but that’s all pretty unlikely. I’m keeping positive.

One week from now I fully expect to be sitting up in hospital with a sore head, a scar the shape of a horizontal question-mark above my right ear, and ideally some new hardware (although I realise technology has to make a few leaps in the next six days to achieve that). Quite probably moaning about not being able to use 3G in a hospital and suffering mild internet withdrawal.

So this is my blog on the subject, because no-one seems to be funny about cancer any more. I’m just putting the ‘umour back into tumour.

I’ll keep you posted.