acoustic neuroma diary

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Well that was easy

Don’t know what I was moaning about. Two hours under anaesthetic, out the following day. Apologies for the previous post, which appears to have been written by an especially un-self-aware 15-year-old Dashboard Confessional fan.

Now, once again, I have a swollen right cheek, a row of fresh stitches and a fortnight off work. This is starting to feel like an annual ritual, but there are worse ways to spend the festive period (such as, for instance, working). Have a good Christmas, why don’t you?

14.12.09 15:52


Start to move

So over the past few days I'd vaguely noticed the tingly, electric sensation along my transported nerve expressing itself a bit more forcefully than usual. But I was busy at work, and there were a couple of gigs I wanted to see, and then I had a hangover that wiped me out for a bit... and after that cleared up, I remembered to take a close look at myself in the mirror.

And there it was. When I asked it to, my right cheek muscle twitched, ever so slightly; not that you'd notice if you weren't looking for it, not enough to raise the corner of my mouth yet, not enough to make me smile. But still, you know, moving. For the first time in three and a half years.

The sun is shining outside right now and I'm feeling quite happy.
23.7.09 11:12

Itís Christmas! Letís be glad!

This was the ideal time of year for an operation. I had the perfect excuse to get up from London to Scotland before the trains became rolling battery farms for humans, for a start. All my presents were bought before the high streets became an apocalyptic purgatory of despair and anomie. And no-one will complain if I don't send them a card (not that I bother with Christmas cards at the best of times). Goodwill to all!

How did the surgery go, then? Not too badly, thanks for asking. The doctors were happy enough. I've got a couple of nice new additions to my scar tissue collection - a crescent under the right ear down to the neck, and a straight line down the length of my left inner thigh (while I was under anaesthetic, someone shaved the top halves of both my legs, which, as well as being 50% unnecessary, made them look oddly effeminate).

Oh yeah, and my right cheek is now swollen up as though I were some sort of rodent secreting piles of food for the winter. Which, in a sense, I am, since I'm back with my parents while I recuperate and they've got loads of crisps and pop in for the festive season. See for yourself:

Not a pretty sight. Not least given the fact that this operation was meant to be cosmetic. But after three years of palsy, I'm used to looking weird.

And there have been some early bonuses. For one thing, it's nice to have a top lip again. I seem to have acquired a dimple, too, at least until the swelling goes down. By all accounts it will take at least six weeks to reduce initially; then it should improve again in maybe March or April; and finally, if I'm lucky, we should see it moving something like six months to a year after the procedure. Which will be in every sense something to smile about.

Downsides? The wound on my leg is nagging me a bit, and I've been confined to the house - and thus indescribably bored - since emerging from hospital.

I did have one moment of existential self-pity. The day after the op, on the plastic surgery ward in Glasgow, tubes poking out of every orifice, morphine pouring into me, I did ask myself: "Why am I doing this? Is it really worth all the inconvenience and discomfort? It's not like I have to be here. I'd normally be in the pub about now."

Back when I had the tumour out, you see, there wasn't a choice: it was a case of get through this or die. Now, however, I was doing this of my own free will. It's not like I couldn't live without a reanimated face.

Then I remembered how lucky I was to live in a country with a well-funded and generous National Health Service. I thought about all the people with similar disfigurements or worse who wouldn't be able to afford or access similar treatment. And I decided that whatever minor difficulties I was presently experiencing probably weren't harsh enough.

So I'm very grateful to be here, enjoying - hopefully - my final semi-smiling winter and reflecting on my good fortune. I hope it's a relaxing time for you and yours, too. Merry Christmas! 

23.12.08 20:52

Means to an end

On Thursday I say goodbye to the saggy side of my face forever. Three years we've been together now. Bye-bye, palsy.

It's weird how you get sentimental about these things. Ever since my right cheek muscle started drooping, I've wanted it either to start working or be replaced. Now it really is on its way out, I'm starting to feel oddly nostalgic about it. Perhaps I'm about to be overcome with affection for George W Bush, too.

Then again, what tangible harm has my palsy - as distinct from the brain tumour which begat it - ever actually done me? It doesn’t inflict any physical pain. Nor has it ever cost me financially. True, it nearly got me into a fight in Camden once. But, really, the blame for that episode lay with me for drinking, and the other bloke's parents for educating him privately.

What inconvenience my mild disfigurement has ever caused me has been entirely trivial. The odd second glance from strangers; feeling obliged to duck out of the way when someone produces a camera at parties; moments of social awkwardness when I can tell casual acquaintances are debating internally whether or not to ask me what caused it (actually, I usually quite enjoy this last one).

All of this I've been psychologically robust enough to handle – damnation with faint praise as that may be. Still, there's no point being high-minded. I'm as vain as the next Topman customer. I'd like to look no worse than sort of vaguely normal. Otherwise I wouldn't put myself through two fairly extensive and discomforting operations, would I?

It's not done for men to admit to physical self-consciousness, even in this age of metrosexuality and moisturising. This is, I think, a good thing. My granddad didn't kill lots of Germans so I’d end up fussing over what I looked like.

I appreciate that a woman similarly afflicted would be judged far more harshly by the misogynist, patriarchal order from which I benefit whether I remember to put the toilet seat down or not. And of course I couldn't tell you whether my romantic encounters over the last three years would have been quantitatively or qualitatively improved by a palsy-less countenance.

But like it or not, we live in a superficial culture. And if I’m offered the opportunity to look, at worst, anonymous, to not have to explain away my appearance, then I’m going to take it.

And if I’m truly honest, it’s not even principally vanity that’s driving me here. For more than three years now, my face has been a permanent reminder of the tumour. All this time I’ve been determined that its removal would neither leave a defining imprint on my character nor be the most significant event in my (nonetheless fairly uneventful) biography. It’s not easy to assert all that with confidence, however, when the first thing anyone notices when they look at me is the damage inflicted by the neuroma.

What I suppose I’m hoping for, then, is some kind of conclusion, a full stop to the episode. Some might call this “closure”. However, I’d rather employ Karen Matthews as a babysitter than talk like a character in Friends.

I’m not particularly looking forward to going up to the Glasgow Royal Infirmary tomorrow. I’m familiar enough with surgical routine now to see it as an inconvenience rather than something of which to be nervous – much as a businessmen might regard air travel, I suppose. But will be glad when it’s all over  – and when, some months down the line, assuming everything is successful, I can (hopefully, eventually) smile again.

Farewell then, palsy. See you soon, everyone else.

9.12.08 17:11

Hip priest

It seems I'm in divine company. The Archbishop of Canterbury, Dr Rowan Williams, has been talking to Radio 4 about how he's deaf in one ear:

"I've got what I suppose could be described as a very, very mild minor disability in that I have a completely non-functioning left ear, it's there purely for decorative purposes. And what strikes me about getting used to living with that, which I've had since I was two years old, is, I suppose, the need to explain an invisible problem to people and to do that in a way that doesn't immediately put them at a disadvantage. Do you start a conversation at the dinner table by saying, 'Incidentally, I shan't be able to hear a word you're saying, I'm deaf in my left ear?' And where do you go from there? But I'm also aware of how it impacts on other things - the fact that in a strange way it helps me sleep better, because I only have to put one ear on the pillow, and that it also gives me a strain in my neck and shoulders if I'm turning round at an odd angle to listen to people on public occasions. So this very, very small experience is one that sends out tendrils in different directions. It makes me think about invisible disability - what is it that I don't see that's likely to be a problem; it makes me think about how something apparently very trivial and very local can actually affect the whole of your body without your quite realising it."

Regular readers of this blog will recall that I share His Grace's views about the advantages of single sided hearing loss in relation to having a kip. I don't find public speeches and dinner table conversations as difficult to follow as he evidently does. But since Dr Williams and I are deaf in different ears, prospective hosts should be careful never to seat me on his left-hand side if they want the conversation to flow freely.

(You can listen to the rest of the programme here.)

20.5.08 11:30


"It's like going for plastic surgery, and coming out looking like an even bigger freak than I did previously." Gonnae put that in your song, Alanis? I know it's not actually an example of irony, but then neither are all those other things in your popular sub-grunge ditty.

I did look a right state coming out of hospital yesterday, though. My face had swollen up so much that I resembled football hooligan "documentary" presenter and all-round ballbag Danny Dyer. A scar, with stitches still in place, ran down perpendicular to each ear, with a large plaster plastered at the bottom of both. The nurses had instructed me not to wash my hair to keep soap out of the incisions, and dried blood was still caked to my lobes. I had to reassure the taxi driver who picked me up that I hadn't suffered a serious kicking.

Back at my parents' house, I'm now recuperating. Not that my present condition involves much physical discomfort. My left calf - from where the surgeon had harvested a spare nerve for my face - sends occasional spasms of pins and needles down to my foot. Eating is made slightly more difficult by the numb, engorged face and the stitches on the inside of my top lip. And I can't wait to scrub my greasy locks, which I'm banned from doing until tomorrow. All things considered, though, it's no more of an endurance than a typical Glastonbury.

Anyway, the swelling should subside in a fortnight. I haven't had a chance to survey my new collection of scar tissue yet, as I have to keep the plasters on the facial incisions until tomorrow and a dressing on my leg until next week. I'll have to have my stitches unpicked - ouch - in seven days, but this doesn't bother me as I'm dead hard.

Oh, and the operation was apparently a success. Still woozy from anaesthetic, I managed to speak to the surgeon shortly after the procedure: all had gone well, he reassured me, and I can come back in six months or so for the second stage. At which point my face will balloon out again and I'll have another chunk gouged out of my leg.

I now feel quite sympathetic to the plight of fading LA starlets. Which isn't particularly ironic, as I didn't have a hostile opinion of them beforehand. But I'm sure that's plenty for Ms Morissette to work with.

13.3.08 14:46

Out of nowhere

So first thing this morning, my phone goes. Can I call the plastic surgeon’s secretary.  I call the plastic surgeon’s secretary. Someone has cancelled, she tells me, and I can take their slot. Do I want to come in for my first operation on Tuesday?

Well, I hadn't seen that one coming. The first thing that goes through my head is: “My work might not be too keen on this” (I hadn’t even warned them surgery was in the offing). The second is: “Yes, yes, indeed I do want to get this out of the way very much indeed.”

Assuming nothing would be happening until well into summer, I hadn’t made any sort of preparation whatsoever. So I’m thrown into a flurry of booking transport to Glasgow, warning my parents that I’m about to impose on them, and so on. Work can’t be nicer, it turns out, and of course I can take as much time off as I need. By mid-morning, my appointment with the scalpel is confirmed.

I’d take the time to reflect on this, and offer you my considered response. But I haven’t two minutes to myself all day. Never did I anticipate the brontosaurean NHS would compel me to act so swiftly. Remind me to ask the plastic surgeon if he can fit in a bit of liposuction while he’s at it.

7.3.08 14:30

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