Wednesday, November 14, 2001. So I’m in the surgery talking to this locum GP,
an urbane old duffer who looks like Colonel Sanders. I tell him why I’m
here; I have this numbness thing going on. Left side of tongue is numb, ring
and fourth finger of left hand, left half of left foot, oh yeah, and left
side of my face is heading that way too. I’m turning into Igor.
“Ramsay Hunt syndrome, old boy,” he chuckles, like I’m his naughty nephew with
a grazed knee. He does everything but ruffle my hair as he ushers me out.
He’s busy, he’s got 4,000 chickens to batter and stuff into stripy buckets.
“Couple of days and it’ll sort itself out.” He was right about that. Two
days later and I certainly wouldn’t have been back for a second consultation
with anyone but God. For whom I’d have a few questions.
I learn later, because I do become something of an expert on this subject –
something that annoys doctors – that my presentation (the posh word for
symptoms) indicates a classic neurological problem. “Indicates” is not
strong enough. Imagine I am walking about with a giant sandwich board with
“this man’s got a brain problem” written on it in neon spray paint, with the
arrow pointing straight at my head.
Instead of sending me away with a smile and a shrug to die at home, he should
have immediately referred me to an NHS consultant for an urgent scan. Though
the first available scan date would have been six to eight weeks later, and
would have come through just as my headstone was being carved.
After my consultation I don’t quite make it home because I’m feeling a bit
poorly. In fact I have a little sit-down in the waiting room. I ring my mate
and sometime writing partner Phil Hammond (the guy on Have I Got News for
You when they can’t get a proper comedian). Phil is a clap doctor but, in
the same way country folk prefer to talk to vets than doctors, I give him a
call on the moby.
Me: I’ve seen some bloke who’s told me I’ve got this syndrome but I think it’s
doctors’ rhyming slang to get rid of me – you know, that I’m a bit of a
Ramsay Hunt.
Phil: No, that’s not in the book. We use acronyms, not rhymes. Like, women who
are into alternative medicine are Grolies – Guardian Readers of Limited
Intelligence in Ethnic Skirts.
Me: Right. Funny. See, but I’ve got this numb . . .
Phil: Or on the notes we might write CK Bundy.
Me: Go on then.
Phil: Completely Knackered But Unfortunately Not Dead Yet.
[We laugh a bit.] Me: Back to me. [I tell him my presentation and await the
usual knockabout stuff. Pause. A proper, uncomfortable pause.]
Me: Phil? Phil: You serious, mate? Me: Yeah. What you reckon? Phil: I reckon
you’re f*****. He tells me to get a scan. I ignore him and go home. My wife
rings him and he tells her to tell me to get a scan. I ignore her and to
prove I’m fine, go straight to bed. In the afternoon. Look, tomorrow’s
another day. And bloody hell, it certainly is.
THURSDAY: I get up. I fall over. Not a good start to a Thursday, I think, as I
proceed to chuck up. The wife would be quite justified in telling me off for
not listening to her as she bundles me into the car, but she’s being nice.
Now I’m worried. As we stop again for me to stagger about and throw up in
the gutter, she’s passing up a gilt-edged opportunity to say she told me so.
I put my now insane dizziness and sickness down to my not having had any
breakfast and her driving, which is, I perceive, quite fast.
We pull up outside a private doctor’s in South Kensington. He took half a
look, did a brief 'touch your nose with your finger no that’s your eye try
again ow now that’s my eye', and pointed us in the direction of the Cromwell
hospital. Go straight to the MRI scanner, do not pass go, do not collect
£200 (in fact, hand over a couple of thousand).
Magnetic resonance imaging enables neurologists to see parts of your brain
that were previously only available to them postmortem, sliced on a Petri
dish. Probably with some fava beans and a nice chianti. But if it’s so damn
smart, why is it so bloody noisy in there? It’s like shoving your head in
the bass bin as a death metal band warms up.
But there it was. Deep in my medulla, the signal junction of my brain, the top
end of the spinal cord, the vital link between the thought and the action,
the area that controls everything from temperature to erections, from
heartbeat to breathing, from eyes to feet, in there, was something. And
something wrong. What it was was another question, and one unanswerable from
this type of scan, but what it was doing was clear.
It was killing me. Here’s something I only learnt later. When the radiologist
was handed the scan, he asked, “Righto, where’s the body?” He was quickly
shushed as I was sitting about 10ft away. Shame I missed that cos I could
have done with a laugh. The verdict came quickly – unlike paying off the
bill for the scan, which I only did about a month ago . . .
The lovely old boy who delivered the news was one of those proper
old-fashioned consultants with a bow tie, Rumpole nose, a bootful of golf
clubs and a basement chocka with Montrachet. He was adamant about three
things: that I needed to go into hospital yesterday, that the thing – now
given the scientific name of “lesion” – in my brain wasn’t a tumour, and
that we were, however, in for “a rocky ride”.
Good old British understatement. When my number’s eventually up I hope I get
someone like him to deliver the news. He’ll tell me I had a good innings,
was beaten by a tricky googly and it’s time for a short walk back to the
pavilion.
The wife asked him if he could admit me to the Cromwell. He said he could, but
asked if I had private-care insurance. “No,” she said. “What do you think it
might cost?”
“Your house,” he answered, WELL, the consultant knew what he was saying. We
were in for it, all of us.
My lovely Michele had just announced she was pregnant with our first child, a
revelation that had been greeted with joy by James, 7, and with a more
cautious whoopee by her daughter Tara, 13, watching her share of family
attention – and inheritance – get sliced up again. They, together with my
mum, who was about to take the next train down from Wolverhampton and not go
home for 18 months, were in for a right old battering.
Character descriptions in scripts are pretty telling. They have to be short as
everyone hates reading them. You boil down a complex character to the barest
essentials, like: BASIL FAWLTY: Frustrated middle-aged snob who runs a hotel
but hates his guests. Terrified of wife, too mean to hire competent staff.
Desperate to climb the social ladder.
I’ll have a go with Michele. MICHELE: Showbiz agent. Thirties. Cross between
Sharon Stone (looks) and Arnold Schwarzenegger (everything else). Working
class but hides it well. Loving, fiercely loyal. Not to be crossed.
Well, that’s 26 words and it’s a start. It doesn’t tell you that in her life
she’s faced several disasters and losses, meaning she’s exactly the kind of
person you want on your side when the chips are down. And my chips are not
down, they are buried.
I’m seen by a variety of polite junior doctors who really don’t want
to get involved with this at such a delicate stage in their career and dash
off to find some real doctors. Who do the same thing until eventually
someone senior enough not to give a monkey’s takes the decision to begin
treatment.
Because there’s no diagnosis apart from “holy s***, he’s going to die”, they
decide to give me everything. In drips. A tip: the only people you should
let near you with a needle are the overworked middle-aged West Indian nurses
with six kids, or the anaesthetists. Everyone else needs at least five
botched attempts.
I don’t know this yet. I get the junior doctors with their Cambridge accents
and trembling hands and eventually up go the drips. They block 10 minutes
later. Then along comes another chinless doctor with a saline syringe to
shove in until the veins in my hand start to desiccate. After several goes
and some polite shouting by Michele I finally get an overworked middle-aged
West Indian nurse with six kids who does it properly.
I’m babbling to Michele. The thing in my head is growing; and the swelling,
unless stopped, will eventually force my brains out of my ears. I read
somewhere that they usually don’t let that happen because they have a man
with a little chainsaw who lops off the top of your head to relieve the
pressure. I’m not sure I believe this but not sure I don’t . . .
I find I am babbling. Oi, isn’t this what the Celts used to do, several
thousand years ago? Isn’t this tre-panning? Do you think I’m possessed by
evil spirits? I’m starting to get a reputation for being awkward.
There is a moment at 8pm called “the handover” when nurses smoothly change
shifts. In reality it results in complete inertia from about 6.30 to 9.30.
Some time towards the end of this limbo I was shifted to a ward. A bed was
free at the end of the room because it was next to a broken radiator. Broken
in an impressively extreme way – blowing out freezing air at about 30 knots.
Straight on to my left side, which was freezing up of its own accord, thank
you very much.
Michele called a nurse. Who already knew about the problem. The radiator was
broken, she informed us, and stood there for a bit sympathising. It had been
like that for days. Terrible, isn’t it? Unfortunately she was not authorised
to call the engineers. Michele got another nurse. Same thing. Michele got
the staff nurse. She also agreed it was broken and agreed it was terrible.
She was not allowed to call the engineers.
Michele demanded to see the night administrator. He would be allowed to call
the engineers. She knew there was a night (or duty) administrator because
she used to work in the health service. There are certain code words you
have to know in the NHS. This is one of them. It was a good card to play and
it threw the trio into action.
By now my core temperature was close to that of a frozen fish finger stuck to
the back of the freezer. Finally, up minced the deputy night administrator,
a man so limp I thought he’d donated his spinal column premortem. He was in
a nice suit, which was a worry. In the NHS, the nicer the clothes the less
the work. He also agreed the radiator was a problem, but in a more chippy
and less appeasing tone. The engineers had gone home.
Michele’s blue touchpaper, which had been nicely fizzing, expired. Ozzy
Osbourne would have blushed. And so . . . the duty engineer appeared, as if
by magic. He took the top of the radiator off, turned a knob from “blow out
freezing air” to “off”, and put the cover on. It took under a minute.
“Why didn’t anyone call me before?” he asked, puzzled. FRIDAY: My left side is
failing. My left hand is turning into the Claw. I’m being switched off, room
by room, like a man turning the lights off in his house as he prepares to
leave. Why me? As I’m wheeled about I see people, old people in gowns
chatting away, looking much better than me. Why are they here? Why are they
trying to get better, the old f******? They’ve had a life. I’m 36.
They begin my angiogram and now I’m strapped to a table and spinning around
very fast. In my disoriented state it was spinning before it began to move
but now the vertigo is so great I think I will black out.
Then they do something so extraordinary I almost, somewhere, smile.
You are not going to believe where they shove the needle in to inject dye into
your brain. (It’s a photographic procedure.) In your groin.
That’s right. The needle starts off right by your knackers – sorry, just move
that out the way, mate – and passes up some handy, if surprised, vein,
through your heart and into your equally unsuspecting grey matter, where the
dye is squirted in. My wife often said the quickest route to my brain was
via my groin. Apparently she was not just being cheeky.
After this there was little time to recover before it was down to the basement
for some more touch-your-nose, hammer-your-knee,
walk-in-a-straight-line-whoops-you-okay? And then an EEG, the first thing
that looked proper. They put an electronic Ena Sharples hair-net on you,
then show you pictures. Nothing very interesting, just shapes and lines and
patterns, but better than daytime telly.
Back to the ward and they think it’s all over. No, it’s time for a lumbar
puncture. Two words that go together like “root” and “canal”. A lumbar
puncture draws off fluid from your spinal cord. The only way to get at this
very necessarily protected, fragile area is to shove a needle in between two
vertebrae in your lower back – the lumbar region. It’s worse than it sounds.
I had been dreading this ever since my uncle Bryan, a bear-like 6ft copper,
told me of his, years ago when he had meningitis. He went white just talking
about it. He said even now, when he sits funny, he can still feel it.
So I was not gleefully anticipating the experience as human robot Matt
approached with some gubbins and a sodding great needle.
I curl on my side, widening the gap between my vertebrae. Matt inserts the
needle. Ow, ow, ow. It’s over. He wipes away the blood. That wasn’t too bad.
No, that was just the anaesthetic. Now he brings out a really big needle.
F***. They tested the fluid for something that to this day I can’t make out
what they’re saying. “Oliver Cromwell bands”, I think, or maybe “Olga Korbut
bands”. Any rate, they were bands and the first lumbar puncture was
inconclusive so I had to have a second one. This time the young ginger
doctor did it. And this time I knew she’d probably only done this on an
orange before so I tried to stretch my vertebrae extra wide, but no. It
really hurt. And you know what? When I sit funny, I can still feel it.
And that was inconclusive as well. SATURDAY: Today the flowers start coming
in. From my work-mates. How ill must I be?
I’m only being told I’ve got flowers, because I’ve just been moved to a “high
dependency ward” and I’m not allowed flowers. They might compromise my
immune system.
This is getting silly. How knackered is my immune system if a couple of
begonias could see me off?
The high dependency unit was designed by a Ba’ath party inquisitor. To make
sure I haven’t died and messed up their statistical averages, two Filipino
nurses come round every two hours, day and night, to take blood pressure,
Sats (oxygen levels) and temperature readings. But they also make me hold
their hands, squeeze, and answer the same damn questions.
“What is your name?” “Where are you?” “Who is the prime minister?” About 2am
I’ve had enough. My name is Tony Blair, I am being held prisoner by the
security services and the prime minister is an impostor from the planet
Arse.
They start observing me every hour after that. SUNDAY: Weekends in hospital
are scary times. No one important is about. Other people’s visitors arrive
and some take an interest in me. I’m the youngest in the ward by about 12
decades. Suddenly I’m a kid with a grazed knee again, being clucked over by
a bunch of grannies just itching to spit on their hankies and rub my face.
MONDAY: Opposite my bed is a fat old dear in a short nightie. She has kicked
all the bedclothes off in her sleep and she’s obviously hot because she’s
writhing around the bed. And I can’t move my head. Help nurse, heeeeelp.
Finally the nurse appears. I indicate the show and she giggles. She gets a
friend over to giggle. Then finally they rearrange the bedclothes and I
thank them.
“Don’t worry,” one says. “She’s been watching yours wave about all night.”
And then something strikes me. It’s a notion that, along with my family,
rescues me. I realise the real battle in the hospital, the one you have to
win, is for dignity. You must understand a body is just a shell around the
real me, the real you. That shell can, and will, go wrong. It will s*** and
piss and vomit and collapse and bleed and lose control. It’s simply what
these shells we are housed in sometimes do. You have to let go, and let go
of the fear of letting go.
And when I begin to laugh somewhere at the utter absurdity of a wardful of
sick dicks flapping about I know I am holding on to the essential me.
I am thinking about writing a sit-com version of my situation (but who would
want to hear it?), when my medical team enters. I do more touch-your-nose,
follow-my-pen rubbish until I shoo the sodding Mont Blanc away and ask for
some answers. And the truth, mind. Don’t hold anything back. I’m a big boy,
it’s my body and I can take it.
So the bastards only go and tell me.
A demyelinating lesion of the brain stem. Of unknown origin. Probably viral.
Which sounds impressive but is really modern medicine’s version of “evil
spirits”; they don’t know where they come from, how they work, or how to get
rid of them.
Myelin is a sticky protein that covers your brain cells like plastic around an
electric cable. It is impervious to electricity, so when the brain sends out
electrochemical signals they pass smoothly through the brain cell system to
the bit of you that needs the information.
If you take the myelin away – ie, if you demyelin the cells – well, remember
when aged 11 you tried to fit that plug on the toaster and let the wires
touch and plugged it in? If you were lucky there was just a small pop and a
bit of smoke; if you were unlucky your Dualit blew up. In my case I set fire
to the house.
So that is the first problem. The second is the positioning of this patch of
demyelin, the thing they call a lesion. It is in the brain stem, or medulla.
The medulla is the grapefruit-sized ball of nerves hanging below the brain
proper. It is the signal box linking the brain to the central nervous
system.
It is easily possible to have a lesion in this area and feel very few effects
– perhaps one of your fingers will become numb, or an eyebrow will twitch,
or somesuch. Maybe your lip will curl into an interesting and sexy sneer
like Elvis’s or James Dean’s. No such luck with me. My lesion is in a “very
eloquent” area. Which means it does everything. And is now stopping doing
everything and hurtling rapidly towards doing nothing.
Tests have eliminated bacterial infections, which can sometimes cause these
symptoms, so my best hope of survival is that it is a virus. Treatment, I am
told, is simply to tackle the symptoms and hope the virus will go away.
There is a further possibility – a tumour, which absolutely means game over.
If it is a tumour, it is in an inoperable site. And, given this thing’s
aggressive growth, it is time to say some goodbyes. And fast.
© Nigel Smith 2007
Extracted from I Think There’s Something Wrong With Me by Nigel Smith to be
pubished by Bantam Press on August 27 at £10.99. Copies can be ordered for
£9.99 including postage from The Sunday Times BooksFirst on 0870 165 8585
