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What's my name?

I want to give my tumour a name. It's about time I had something to call the little sod. "Tumour" is too melodramtic, "acoustic neuroma" too cumbersome. "Vestibular schwannoma" is just a non-starter. Besides, I want something specific to my own particular lump of cells. I'm far too vain to let this just be any old common-or-garden growth. 


Dennis Potter called his Rupert. An excellent name, but then his was malignant. What better title for something corrupting everything in it touches, rampaging cancerously through the body politic? But mine just sits there, growing without spreading. It doesn't so much want to destroy or ravage as intrude into a place it isn't wanted, and the chaos it creates is an unitentional side effect of its existence rather than its raison d'etre. It needs to be called after something more, well, benign.


I'm thinking Ally McCoist rather than Graeme Souness, Dermot O'Leary instead of Davina McCall. Not so much Phil Collins as Mike Rutherford. A year or so ago I would have called it Jamie, after Mr Oliver, but for reasons explained here my attitude towards him has shifted from viceral, cold-blooded loathing to grudging acceptance.


This isn't to say than benign destructiveness is necessarily preferable to malinancy. Compared to someone who is obviously evil - Michael Howard, say, who as a minister looked as though he would have happily gone around setting fire to maternity hospitals and hospices if only the parliamentary arithmatic were not so tight - Kenneth Clark seemed the very image of good-natured bonomie. Yet with his hush puppies, love of jazz and Nottinghamshire vowels he did more to royally gut our public services of equity, professional automonmy and efficiency than any other member of that sorry excuse for a government.


And at the other end of the political spectrum, how about calling it Ralph? Few doubt Mr Nader is a good man, well-intentioned, principled, and with a track record of fighting noble causes. Yet by splitting the vote in 2000 he is as much to blame for the presidency of George Bush as is the thoroughly malign Karl Rove.


Literature has always understood the tragic potential of such characters. I'm thinking Gregers Werle in Ibsen's The Wild Duck, whose well-meant idealism destroys a family. I'm thinking Don Quixote. I'm thinking Mr Magoo. Actually, I like the last one best.


Or should I pick someone who is ultimately a parasite, growing on a host organism without malice but having an ultimately destructive funtion? For this we need to pick a member of our own Royal family, being careful to score out the more obviously malignant. That's Charles ("These bloody people. I can't bear that man. I mean, he's so awful, he really is"), Harry with his swastika and Phillip with the opinions to match ruled out, then. William, then, or Edward? Actually, a more appropriate example, after having built a career standing outside Buckingham Place reading out press releases and covering the opening of lesiure centres in Windermere, might be Jenni Bond.


Right now I'm toying with Ally, a name that reminds me of gormless, soul-drenching cheeriness giving a cloak of respectability to the dominance of a football club whose signing policy would have done PW Botha proud. But I'm sure you can do better. Post a suggestion below or email me with your favourite - I'll let you know the result in due course.

5.9.05 11:50


Brain salad surgery


Thank God for the 21st century





From here
6.9.05 13:00


Time to get ill




I've got a date. No, not that sort. Not the kind where you make stilted conversation and pretend you like Morcheeba. A hospital date. I know that won't sound quite as enticing to some of you, but at least when you see a neurosurgeon you don't generally have to put on aftershave first.

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 all pencilled in. I'm admitted on Monday November 7. The op takes place on November 8. So I suppose that's a deadline for buying pyjamas.

It's a bit further off than I expected. To be honest, if I could go in now I would. Actually, that's not true; I'm really, really looking forward to the three and a bit weeks of leave I'm due. I suppose I should tell you I'm going spend this time taking in the most visually enriching vistas or retina-astounding art I can, so I can take these images with me inside the grey hospital walls. But who would I be kidding? You know as well as I do that I'm going to alternate between Trisha and the pub, and it's going to be great.

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 very one I'm going to be treated in was the place both where my dad worked as a nurse and I had my adenoids out 21 years ago. But that's the extent of my clinical experience. Apart from watching Casualty, of course, with my dad tutting and telling the screen: "That's ridiculous. The first thing they tell you is not to hold down someone who's having an epileptic fit."

Well, I'm going to get to know one now. Which is quite handy, as I've always liked Lucozade.
6.9.05 17:57


Is it really so strange?




I'm wearing a hearing aid right now. It's a scandalous waste of NHS money. In less than two months it will be totally obsolete - that ear will go completely after the op. But I booked the appointment before the consultants knew about the tumour and, bureaucreacy being what is, no-one thought to cancel it. Plus, I fancied the morning off work.

I'm going to ditch it at the weekend. It doesn't really improve my hearing beyond amplifying to a miniscule degree what I can pick up already, with the added sountrack of a tinny, metalic whine. My love for the Smiths does not extend to wanting to look like Morrissey doing Heaven Knows I'm Miserable Now on Top Of The Pops. Well, not quite enough. Besides, I lose pens, ties, notebooks, state secrets and my mobile with astonishing regularity. How much of a drain on the taxpayer do I really want to be?

If I'm honest, the main reason for wanting rid of it is that I'm trying to get used to what is known by experts, surprisingly concisely, as single sided deafness (SSD). I still have the use of a small amount of hearing on the right side and I want to get into the habit of living without it. I'm all for avoiding unwelcome truths and refusing to confront reality, but kidding on that ear is salvagable is taking denial a bit far.

In a way it's a shame as I was all ready for a hearing aid. I've been growing my hair the past few months so it masks the top of my ears. In tandem with the little clear plastic earpiece, this makes the whole contraption more or less invisible unless you're looking for it. I mean, I fashion an entire look on the back of it, and they go and tell me I won't need one after all? I ask you.

And I'm really missing the boat style-wise. The Royal National Institute for the Deaf is running an exhibition of hearing aids designed by some achingly cool "creatives" to prove they can be like, really hip and trendy. What does this make me? Out of step with the catwalk, as usual.

Actually, I suspect it woudn't get worn much anyway, fashionable or not. I know I'm a bit short-sighted but I've never got round to buying those glasses I've been prescribed. Deep down I don't want to admit to any imperfection which is a manifestion of, as my subconscious sees it, the aging process. So if I'm still squinting at the electronic displays on the tube, I suspect the hearing aid wouldn't stand much of a chance.
15.9.05 13:18


Fame (the Bowie one, not the theme tune)


Every illness needs a celeb. Aids has Liz Taylor. Cancer has Lance Armstrong. Parkinson's has Michael J Fox (although I reckon Shakin' Stevens would be much more appropriate). But acoustic neuroma, it seems, is just not sexy enough for Hollywood. Great Yarmouth, even. You won't find Bob Geldof organising any benefit gigs for it. And this has its consequences: the reason the consultant who diagnosed my tumour had to write its name on a post-it note so I could google it was that my awareness had not been raised. If only ANs had somehow been sprinkled with the glitter of showbiz.

That's not to say there has never been anyone in the public eye with too many schwann cells in their lugs. It's just that - how can I put this delicately? - they are hardly A-list. Here's a run-down of celebrity sufferers, all of whom were/are decent, worthwhile people, but none of whom has yet warranted a spread in Heat magazine.

Raymond Bonham Carter

Dad of Helena, grandson of Liberal Prime Minister Herbert Asquith. In his own right, a merchant banker who suffered a major stroke on the operating table in 1979 having his AN removed and was confined to a wheelchair until his 2004 dea... actually, can we move on to the next one?

Rod Franks



Principal trumpeter with the London Symphony Orchestra. Had to learn to play again from scratch after his op in 2002 robbed him of his facial muscles. Released a charity CD in aid of AN treatment. A thoroughly top chap who I may have to interview for this blog at some point. More here.

Michal Levin



Former model at Vogue, beauty editor at Tatler and reporter for Newsnight. Probably the most prolific advocate for acoustic neuroma after she wrote extensively about her 1994 operation. Now a medium. See her website here.

John Michael Montgomery



Kentucky-based country singer noted for his liberal (by Nashville standards) politics. Runs his own bar and grill in his hometown of Nicholasville, KY ( "Minnie Pearl did it. So did Lorrie Morgan and Sammy Kershaw"). Revealed he suffered from AN in March after an off-key rendition of the US national anthem at an Atlanta race meet led detractors to accuse him of being drunk. Check out his website.

Now, these are all extremely interesting characters, to each of whom I will devote an entire blog entry at some point. But unless you are particularly into country music, spiritualism, orchestal trumpeters or Helena Bonham Carter I suspect they will be new to you. And without the necessary reach into today's celebrity-obsessed culture, none of them have the capacity to get us wearing coloured ribbons or those sillicone wristbands that get all sticky in the heat.

I must correct this imbalance by becoming well-known, immediately. When the papers ask why I ran amok in Brent Cross Shopping Centre with a firearm you'll know what to tell them.
16.9.05 10:45


You were right

Remember I mentioned in passing how, in the context of research into the side effects of mobile phones, virtually every national newspaper referred to acoustic neuroma as a form of "cancer"?

So far only one has published a correction: take a bow, the Daily Mirror, which printed a clarification on September 8.

Then hang your head in shame again for not updating your website, so I can't provide a link.

And before you ask: no, I didn't.
16.9.05 13:48


I should be laughing




A few years ago I was at a Hibs v Dundee United game when the bloke sitting behind me came out with what remains the most tastless 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 saw he was at least six foot three, built like ther proverbial brick outhouse and clad despite the Edinburgh winter in just a t-shirt which revealed his extensive tattoos. So I kept my mouth firmly shut, as did other spectators around me once they saw him. He carried on repeating it over and over until he got bored.

Before cowardice took over, my motivation for wanting to silence him was not the fact I was shocked or offended myself. Instead I wanted to protect the sensibilities of others who might be, perhaps because they or one of their loved ones had been afflicted by tumours. Such is my corrupted and twisted mind, in fact, that to my shame I secretly found the chant quite funny.

I still do. 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. Here's one of my favourites: What's the difference between a truckload of babies and a truckload of bowling balls? You can't unload the bowling balls with a pitchfork. I'm going to hell.

Admittedly my own rather niche brand of illness means there is very little in the way of gags about it. If you google "acoustic neuroma jokes", as I said earlier in a comment on this site, you don't get any results. I can, however, adapt an old cancer line to give you this: How many brain tumour patients does it take to change a light bulb? Just one, but he needs a support group to cheer him on, and there's a lot of grieving afterwards.

Of course, as a sufferer I am immediately immune from accusations of insensitivity. Anyone who hears me making gags about my own condition will smile indulgently and assume it is a coping mechanism. It isn't. I'm just depraved.

You would think having my hearing impaired might be a more fertile source of black humour. One of the only times I laughed at Jasper Carrot was when he put his hand over his mouth and declared: "Right, let's all take the piss out of the deaf" (the BBC switchboard was jammed with complaints, although I presume none of them can have been deaf themselves). But then losing your hearing in just one ear, resulting in your life functioning more or less as before, means they don't actually apply to me. Try this: How do you sell a deaf bloke a duck? (Yelling) DO YOU WANT TO BUY A DUCK? Funny, but entirely unrelated to my condition.

So I'm now making it my mission to come up with some decent acoustic neuroma jokes. Come on, it's not like there's no comic potential in vestibular schwannomas. Please let me know if you hear a decent one and I'll post it up here. In the meantime, he's one to keep you going:

A bloke goes to the hospital to get the results of some tests. "I have two bits of bad news for you," says the doctor. "Firstly, you have a major brain tumour that will require an operation."

"Oh, right," says the patient. "What's the other thing?"

"I'm afraid to tell you that you have Alzheimer's disease."

"Ah well. At least I don't have a brain tumour."
20.9.05 13:47


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