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Can't get you out of my head

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 to me, just four centimetres, but it's apparantly 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. And like the incorrigable journo I am, I thought: "That'll make a great feature. Wonder if I can get a blog out of it?"

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 absolutely nothing about the condition? Or should you go for bluff, you'll-be-ok-lad reassurance, thus running the risk of sounding uncaring? I tell you, it's a social minefield. Thank God I'm on the other end of it.

Actually, the etiquette of the situation is not without difficulties for me. Quite frankly, 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 each, on average - to explain. They want to hear every spit and cough about what exactly the condition is, what are the risks, what will be the side-effects of the op. It was ok for me the first couple of times (normally one of my favourite passtimes is, after all, talking about myself) but now I'm bored. I mean, how many times can you repeat the same spiel about the difference between benign and malign? It's enough to make me summon the man with the cranial drill and demand he gets a move on.

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-boyfriend or girlfriend, I wanted to push the responsibility onto someone else. Taking the coward's way out is always to be advised.

That said, keeping quiet has its downsides too. I've not let anyone I work alongside know yet, save management, because I really cannot be bothered. Journalists are, by their nature, incapable of keeping their mouths shut and I don't want the Miriam Stoppard treatment every time I buy crisps from the vending machine. But I know I'm storing up trouble for later. When I was on the blower this morning and someone shouted it was my turn to go on a tea run (such is the adrenaline-pumped nature of life in a newsroom) I couldn't hear, genuinely, because the tumour has robbed be of most of the use of my non-phone ear. So the response was as you'd expect: "Ho ho, bloody headcase with his selective hearing. Never reacts when you tell him it's his round." All good natured of course, and in no way offensive to me. But it made me think that the person who said that, and the people who chuckled along with him, will probably feel bad when they find out. And because they're decent people, that makes me feel bad now.

So I don't have to explain it again, the thing in my head is called an acoustic neuroma. Actually, its Sunday name is a vestibular schwannoma, but as that takes ages to pronounce we'll stick with the dumbed down version. It is a growth of cells on the eighth cranial nerve between the inner ear and the brain - the bit that controls balance and hearing. An acoustic neuroma is officially recognised as "large" if it is over 2.5cm, so mine is a bit of a whopper. It isn't malignant, or cancerous, so it won't spread to other parts of my body. But it is growing, and it if it keeps pressing against my brain stem I will die.

Sometimes very small ones are left alone, as they don't unusally cause too many problems. Medium-sized ANs can be zapped with gamma knives (which have the coolest names of any surgical implements, ever). Mine has gone a bit beyond that. So a team of surgeons will have to slice my head open, rummage around inside, and afterwards make sure I'm well stocked up on Neurofen.

I'll go into the side effects, the recovery process and (the bit you really want to hear about, admit it) all the things that can go wrong another time. In the meantime, I'm just looking forward to a probable six months getting paid for sitting in my parents' spare room doing Sudoku puzzles. This blog should help while away the hours. Anyone got any good DVD box sets they can lend me?

19.8.05 14:24


Everyone's gone to the moon


I've always thought of myself as, you know, reasonably good looking. I don't want to overstate this. My appearance is nowhere even approaching film star rank, let alone universally appreciated. I'm carrying a few surplus pounds and my teeth a bit wonky. But on a continuum with, say, a young Robert Redford at one end and Stoke City midfielder Luke Chadwick at the other, I'd put myself closer to the Sundance Kid. Just. I could look a hell of a lot worse, put it that way - given the choice you'd rather have my features than David Mellor's.


But now I face the likelihood of becoming ugly. Not just ugly, in fact, but deformed: my face twisted and lopsided, with one unblinking eye there just to terrify passing toddlers. It's not a look that, as far as I'm aware, has yet caught on in Hoxton, although I'm sure it's a matter of time. Still, to the rest of society I'm going to look very unappealing indeed, and the only question in all probability is whether this state of affairs is temporary or permanent.


I'm ashamed to say, because I didn't realise before how vain I was, that this is the consequence of the operation I fear most. It isn't even the most likely side effect, or the worst possible. On one hand, becuase I know I am definitely going to lose all the hearing in my right ear I accepted it straight away. After all, it was more or less gone already, and single-sided deafness isn't all that dramatic: the aural equivelant of walking around with one eye shut (you take in everything you need to, but sometimes have to turn your head a bit more). On the other, there is the one per cent possiblity of death and the two per cent chane of stroke. These seem remote enough not to worry about just now, and if I buy the proverbial farm at least I won't have to deal with the consequences. Likewise the five per cent likelihood of needing a tracheoctomy, which can be sorted out in the long run anyway.


But the prospect of permanently looking like I can eat tomatoes through a tennis racket seems somehow more ominous. The other possible outcomes seem either manageable in the long run or (and I stress these are very, very remote possibilites, especially given I'm being treated in a major nerologial unit) so severe there's little point specualting about them. But there's something about disfigurement that strikes at one's sense of self. Disfigurement of the face is more dramatic yet. The very image I prevent to the world being transformed for the worse is, I admit, a pretty depressing one. And I admit I'm vain enough to get worried.


Not having a girlfriend is a massive relief at the moment, because a) I'd hate to put someone through all that right now and b) I really cannot be bothered worrying about anyone else. But there is no doubt the chances of getting another one could be severly impaired. In general, walking into a nightclub looking like Quasimodo is not the best way to attract the ladies. Young girls growing up rarely fantasise about their wedding day to a man resembling Bill Deedes, but just on the right hand side. Terrfyingly, I'm going to have to start showing people The Beauty Within. I mean, Jesus, even I don't know where that is.


Here's what we're looking at. The acoustic neuroma is pressing against the nerve that controls the facial muscles. For some reason this 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 malfuntions. The best case scenario is that the nerve is left intact and eventually heals - and given the size of the tumour, and the fact it is also distorting the ear canal, 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.


Having a visage like Jonathan King is not, of course, the most debilitating thing that can happen to someone. Surgery can go some way to repairing it: I can have a facelift to correct the limpness a bit, although I'll still have no movement on that side. If this is the worst consequence of the operation I'll be grateful to be alive. But because it will strike at the core of how I appear to others, I don't want it to happen. I know men are supposed to be nonchalant about their appearance and scoff at preening, mosturising pretty boys. But believe me, the prospect of lifelong disfigurement makes mirror-checking metrosexuals of us all.

21.8.05 17:57


Insane in the membrane

Don't you agree that "Acoustic Neuroma" would be an ideal title for an Unplugged album by Korn or Staind or some equally dreadful nu-metal band?


I must copyright the idea before Fred Durst beats me to it.

22.8.05 13:14


Hanging on the telephone

Like every other parasitic twentysomething meeja wannabe, I've spent the last five years with a mobile phone clamped more or less permanently to my head. Contrary to what you might expect, this has less to do with the demands of staying in touch with the office than sending frivolous texts to friends, spreading malicious gossip and ordering companions to join me in the pub. Virgin Rail "quiet coaches", Trappist monestaries, state funerals - none of them have the gravitas to keep me off the blower. To be honest, I probably deserve everything that has befallen me.

Given that my predeliction for holding a device which radiates energy like Mariah Carey emits evil onto my napper, you might be forgiven for suspecting there could be a causal link. Scientists certainly feared there might be. Last year a Swedish
study concluded the risk acoustic neuromas was doubled by mobile phone use. The research found it was four times more likely the AN would be on the side of the head which most often had the device pressed against it.

As a result, Sir William Stewart, head of the Health Protection Agency, advised the under-16s against using mobiles, resulting in plenty of lurid
press coverage



Presumably having taken some of this in subconciously, my first question after learning I had a tumour to Antony Narula, the ENT consultant who diagnosed it, was whether the phone was to blame. He doubted it. "Acoustic neuromas are easier to find these days because MRI scans can pick them up better than the old CTs," he said. "No-one's got a clue what causes them."

And today a five-nation study backs him up. The Department of Health says there is "no hard evidence at present that the health of the public is being adversely affected by the use of mobile phone technologies". The research faculties of the nation's journalists may have been, however; our Fourth Estate cannot resist trumping the word "cancer" in its headlines, since the survey was published in the British Journal of Cancer, forgetting that acoustic neuromas are, er, benign. Name and shame time: I'm talking about the Times ("Phone study lowers cancer fear"), the Independent ("Using a mobile phone regularly does not cause cancer, scientists conclude"), the Guardian ("Mobiles 10-year all-clear for cancer"), the Daily Mirror ("Mobiles do not give you cancer"), the Daily Mail (Study finds no link between cancer and how long  phones are used") and the Sun "Mobiles: cancer 'not a risk'"). Tut tut.

Anyway, I'm not a scientist; in fact, I'm about as well qualified to pontificate on this as Howard the Duck. However, what's clear is that because mobiles are relatively recent inventions, researchers are unable to say what are the long-term implications of using mobiles. So much, much more work needs to be done.

Now, if my addiction to Nokia is what casued my tumour I blame no-one but myself. I refused to wear a personal hands free kit out of no other motivations than vanity. There was no way I was walking down the High Street talking into a bit of plastic like a confused vagrant who thought he was Norman Schwarzkoff. I didn't want to look like a tit. And if that's what gave me my AN, well, the buck stops here.

But the mobile phone companies (meaning handset manufacturers and network operators) who make vast profits out of our addiction to mobiles must have some responsibility too. I'm not threatening to take them to court or demanding damages. All I'm asking is that their shareholders forsake a fraction of their hefty dividents to fund further studies into whether a link exists. That way they might avert all-out bloodshed if one is eventually established and my fellow AN sufferers take to the streets. In return, Mr Branson, I might just keep my voice down on the Quiet Coach.
31.8.05 11:37





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