Friday August 19 2005
For about a month now I've known it's in there; I've been carrying it around for a lot longer. It sounds tiny, just four centimetres, but apparently it's a big 'un. Big enough to kill me, anyway. That's why they're going fill me with anaesthetic, cut open my skull and try to chop it out.
Friends do not react at all well when you say the words, "I've got a brain tumour." I know I wouldn't. I'd freak. After all, what do you say to someone in that position? Do you show pity, or is that patronising? Do you offer advice, when you know nothing about the condition? Or should you go for the bluff, you'll-be-OK-lad reassurance, running the risk of sounding uncaring? I tell you, it's a minefield. Thank God I'm on the other end of it.
Actually, the etiquette of the situation is not without difficulties for me. Telling people is an almighty pain in the arse. Of course I appreciate everyone's concern. But I've let maybe a dozen people know about it, and each time it takes ages - I reckon 45 minutes - to explain. It was OK the first couple of times, but now I'm bored. I mean, how many times can you repeat the same spiel about the difference between benign and malign?
When my flatmates said they hadn't told anyone else about it, giving me the opportunity to let the world know in my own time, my heart sank. Was I really expected to do all this myself? Like someone with a new partner who hasn't told their ex, I wanted to push the responsibility on to someone else, to take the coward's way out.
The thing in my head is an acoustic neuroma. It's a growth of cells on the eighth cranial nerve between the inner ear and the brain - the bit that controls balance and hearing. It isn't malignant, so it won't spread. But it is growing, and if it keeps pressing on my brain stem I will die. So a team of surgeons will have to slice my head open, rummage around inside and then make sure I'm well stocked up on Nurofen.
Sunday August 21
I've always thought of myself as reasonably good-looking, but now I face the likelihood of becoming ugly. Not just ugly, but deformed: my face twisted and lopsided, with one unblinking eye to terrify passing toddlers. The acoustic neuroma is pressing against the nerve that controls the facial muscles. For some reason it doesn't mind being stretched, but objects greatly to whatever is stretching it being taken away. When this happens, the face palsies on the side of the tumour and the mechanism that opens and closes the eye malfunctions. The best-case scenario is that the nerve is left intact and eventually heals, but given the size of the tumour, I would be lucky to get by with this. The worst that can happen is that the nerve is severed during the operation and the medical team are unable to repair it. If this happens, the muscles will go on the right side of my face, drooping permanently, and I can forget about that modelling contract with Prada. I know men are supposed to be nonchalant about their appearance and scoff at preening pretty boys. But believe me, the prospect of lifelong disfigurement makes mirror-checking metrosexuals of us all.
Tuesday September 6
I rang up the neurology department today expecting to be told again I'd have to wait to find out when I'm due, but apparently I'm pencilled in for admission on Monday November 7. The op takes place on November 8. So that's my deadline for buying pyjamas. To be honest, if I could go in now, I would.
I have to admit I don't know much about hospitals. I know I was born in one. There's another down the road from the house where my parents live. I've occasionally visited relatives in them, briefly. The one I'm going to be treated in was the place both where my dad worked as a nurse and where I had my adenoids out 21 years ago. Well, I'm going to get to know one now.
Tuesday September 20
A few years ago I was at a Hibs v Dundee United game when the bloke sitting behind me came out with the most tasteless football chant I have ever heard. The subject of the ditty was former Easter Road legend Darren Jackson, who ended up playing for Hearts in the twilight of his career. He had recently had a health scare when it was revealed he suffered from hydrocephalus, a build-up of fluid on the brain. To the tune of Winter Wonderland, the song ran thus:
"Today I heard a rumour
Darren Jackson's got a tumour.
What a wonderful way
To spend your day
Watching Darren Jackson pass away."
I turned round to tell the chanter to shut up, but he was six foot three, built like the proverbial outhouse and clad, despite the Edinburgh winter, in just a T-shirt. So I kept my mouth shut. He carried on repeating it until he got bored.
I always wondered whether being afflicted by a serious condition would affect my sense of humour. So far it hasn't, and in fact my penchant for sick jokes is as strong as ever. Admittedly, there don't seem to be many gags ready-made for my rather obscure illness. You don't get any hits if you Google "acoustic neuroma jokes". I can, however, adapt an old cancer line to give you this: how many brain tumour patients does it take to change a lightbulb? Just one - but he needs a support group to cheer him on, and there's a lot of grieving afterwards.
Monday October 10
At first, I'll admit, I was looking forward to six months of lazing around watching reruns of Quantum Leap and Oh! Doctor Beeching. But my days are going to need a bit more structure. So here are my five post-op targets which, though falling short of discovering a cure for cancer, should at least add some purpose to my life.
1. Grow a beard. I've always wanted to do this. At university I used to crack under the pressure of itchiness after about a week. Now, if no one other than my parents is going to see me for days on end, I might as well take advantage; my face is going to be looking strange enough anyway.
2. Become a pub quiz genius. By next spring I'm going to know the Periodic Table and the capitals of the world by heart.
3. Learn the guitar again. I've never exactly been Django Rhineheart, but time was when I was well enough versed in axemanship to serve some time in a couple of thoroughly dreadful bands. It's time I was able to help people warble out of tune to Kinks songs at parties again.
4. Complete a hard sudoku puzzle without making notes.
5. Watch an entire series of 24 in a real-time single sitting. Admit it, you'd love to do this.
Monday October 24
I got through the front door fresh off the train, dropped my bags and made myself a cup of tea. Then I went into my brother's old room, sat on the bed and thought about how this will be home for the next six months. This morning I woke up in London. Now I'm writing this at my parents' house. I'm grateful in the extreme to my folks for putting me up, and I'm looking forward to a steady diet of digital TV and home cooking; but I must admit my plans for life didn't include living with my mum and dad at the age of 26.
Thursday November 3
They say it takes fewer muscles to smile than it does to frown. Except for me there soon won't be much difference, at least on my right side. I'm looking at losing the use of all my facial muscles on that side, so if I've got my head turned a certain way you won't be able to tell if I'm elated or depressed. Which will be handy for playing poker.
On the website of the British Acoustic Neuroma Association, there's a quote from a study of people recovering from surgery: "I have emotionally found it extremely difficult that I have lost my smile. I used to be a very smiley person." Members can buy a range of pens and stickers featuring an acid house-style face, with the mouth turning upwards at one side only. It carries the slogan "I'm all smiles inside".
So does that mean I am too? That all depends how the operation goes on Tuesday. The hard bit isn't getting the tumour out, it's preserving the nerves that control the facial muscles. Even if they stay intact, my right side will temporarily palsy. By "temporarily" I mean anything up to two years, and in the end the face might even function at 80% capacity. But I would take looking relatively normal by 28. Currently playing: Brian Wilson's Smile.
Monday November 7
They say it's going to rain today, that the temperature is going to take a dive. I couldn't care less; I'm going into hospital.
Everything I have written until now has been speculation, a combination of educated guesswork and slightly morbid revelling in worst-case scenarios. The possibles and probables are about to turn into actuals and definites. Tomorrow they'll wake me up at 6.30am. Within the hour I'll be under anaesthetic and out until lunchtime on Wednesday. And what they do between 8am and 9pm could define the rest of my life. Who knows? I'm just keeping my fingers crossed that the surgeons keep away from the pub tonight.
The temptation is to look upon the growth as a manifestation of some kind of inner turmoil which is about to be excised, or as the sins of my soul that will be cut out for good. I'm not going to do that because I know whatever flaws and demons I carry with me will still be there when the operation is over. But I know they will take from me more than a lump of cells. I've never gone through anything remotely like this before; I suppose I'm going to be changed for ever. Hopefully something will be added too.
Wednesday November 23
As you can see, I'm not dead. The last couple of weeks have been a bit of a blur, which I suppose is a predictable side-effect of having strangers fiddle around inside your head for 13 hours. But the upshot of it is this: I'm here, and in good shape. I look rather weird, of course. The right half of my face doesn't work and I can't close my eye on that side. I have the haircut of a far-right extremist (or a member of the Bravery) and a huge scar around my temple. My sense of balance is shot: my best attempt at walking consists of shuffling like a Chelsea pensioner on his way to Ladbrokes. None of this bothers me too much. Because just before they stitched me back up, the surgeons checked my facial nerve and it seemed, though bruised and swollen, to be intact. So my chances of looking normal again are good.
Friday November 25
Before my operation, I expected the most troublesome aspect of my recovery to be the head wound left by the surgeons. Failing that, I dreaded losing my balance. I was wrong on both counts. By far the most irritating side-effect of my operation is my permanently open right eye. I wish the sodding thing would hurry up and let me wink like Sid James again. To guard against irritation and, potentially, an ocular ulcer, I have to swipe it with cotton wool dipped in saline fluid every couple of hours. Then I squeeze under the lower lid a substance called Viscotears. That's right; artificial tears. There's a ready-made literary device for all you aspiring novelists.
Friday December 9
Yesterday I celebrated the one-month anniversary of my operation by ... going back to hospital. Don't worry, I've not started bleeding out of my nostrils or anything. It was a routine check-up. While I was there, my ENT surgeon told me he wanted to slice my right eyelid open and insert a sliver of precious metal. This isn't because I'm keen to engage in bizarre fetishistic practices. I just want to be able to shut both my peepers without having to use industrial quantities of surgical tape. Popping a gold weight into the lid will help it open and close. So hopefully after this new op I'll look a bit less of a freak.
Now, I'm sure the more scientifically literate among you will know that the element Au is highly stable and inert: it's unlikely to break down, meaning the surgeon can just take it all out again if my nerve heals. I've read up on that too. But all I can think is: gold! Always believe in your soul! How bling is that? I really want to walk through an airport metal detector and, when the alarm goes off, declare nonchalantly, "Oh, I forgot. That must be the gold implant in my eye."
Saturday December 31
Looking back, it feels like 2005 was two different years, not one. Six months ago I was beavering away at work, blissfully unconcerned about my health; strange to think that so recently I didn't even know what an acoustic neuroma was. Since then I've been preoccupied with the operation and its aftermath. Career, money, ambition, appearance - none of these seem very important now. Which is just as well when you're on the sick and living with your parents.
Before they cut me open, I imagined the experience would be in some way life-changing. I suppose now I'm less uptight - it's hard to get worked up about anything short of major brain surgery these days. And I feel much closer to family and friends after they rallied round. But otherwise I feel much the same bloke as before. Sorry if that sounds less dramatic, but to me it's a big comfort.
Less about the old year. I've so much to look forward to in the next one. I can get back to work in a few months and hopefully, by the time 2006 is out, my face will look normal again. So tonight I think I'm due a measure of single malt - it's been two months since I touched booze, and now seems a good time to jump off that particular wagon. As the bells go I'll fill my glass and raise a toast. To your good health, and mine.
· Jon's blog is at www.20six.co.uk/headcase
