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7 Feb 2008

Post Number 10: Gamma-Knife Surgery (!)

Ok then, I'm quite fearfully going to have another go at another proper post to describe my bloody awful radio-surgery and the dreadful Royal London hospital (RLH). I had been in the delights of Drapers at the RHN for 5 months when someone remembered (it often seemed like that). That to stop me having another (possibly fatal) stroke I needed this procedure, terrifyingly called Gamma Knife surgery

Why, given all the brainpower required to invent such a clever machine they couldn't have called it something a bit less scary I don't know? Given its complexity and cost there are only two such machines in the country . One in Harley street and one somewhere up north. I was booked in to the Harley street one and by virtue of its proximity, the RLH was where the preparation work would take place. I was transported there by RHN transport ambulance in early September with the intention of staying one night. First impressions of the place were not good . In grim Whitechapel the RLH is a huge monstrosity of a Victorian building, I would go as far as to say, it's places like this that symbolise everything that is wrong with the NHS.

After we'd got rough directions from the overworked, underpaid and obviously overstressed unhelpful lady in the overcrowded low ceilinged nightmare of a reception area
We moved through to what I remember as a huge high ceilinged central area (sort of lobby I suppose with lots of out of work (at least I hope they were) Victorian cagelifts with all manner of wheels, pulleys and cables, here I was about to have brain surgery with gamma rays and I felt as though I’d been transported back to the 19th century. Having being transported upwards in one of the more modern (but unbelievably cramped lifts ( In most big London hospitals patients and punters have separate lifts, not so the RLH where it is a shopping centre free for all. No wonder the RLH is a hotbed of superbugs and infections. After we had been hustled out of the lift on vaguely the right floor we had to go down a narrow corridor where the signs were in English and Urdu. It was at this point where I remember thinking two things, firstly the RLH was a rabbit warren where death stalked the corridors or hid round every corner, second, that rather than this being one of Londons flagship hospitals, it was in fact somewhere in the third world an impression strengthened by the fact that it seemed the whole interior of the place was painted a horrible diarrhoea brown. When we had reached the Nuero unit they ( predictably) had no idea who I was and none of the right paperwork to give me a bed (which I desperately needed because I had now been in my chair for hours. A common problem for stroke patients forced to stay in a chair for hours. Luckily at this point Andrea appeared as if by magic (remember the lovely Saffa from the FC?) It wasn’t that random because just when I was leaving the FC she told me that she had just got a job on the high dependency unit at the RLH. It may not have been random but it felt like a massive coincidence and for a minute Andrea felt like my guardian angel because within minutes she had sorted me out a meal and a bed. I was indeed grateful to get out of my chair but the ward I was on ,the Sofia ward was proper old school NHS, about 30 patients, mixed ages and sexes,no privacy at all, it looked old and filthy and had the feel of somewhere Florence Nightingale might have worked in the Crimea…How on Earth do you motivate staff in an environment like this? I had never felt so lonely and so vulnerable so I put a bit of a panic call into Tony. He managed to unearth some people to come and see me at the end of their working day. Scarcely have I been as overjoyed as when they turned up. I felt as though I’d been saved. Probably a slight over reaction but I will forever be eternally grateful to them for turning up when they did.
So my night on Sofia ward did nothing to lessen my fear about the next day, it was the type of ward that BUPA should use in their advertising to scare more people to part with their hard earned.
So they woke me up early the next day and put me on a stretcher in an operating gown, little did I know this was to be the worst day of my conscious life. I do apologise for the downbeat nature of the content, the first thing they had to do to me was fit this aluminium frame to my head so they could plot the co-ordinates of the AVM relative to it…The only way to make it stay in the same place all day was to screw it into my skull in several places. At each point they put a screw in they tried to inject some local anaesthetic. This would have been great had the anaesthetic have made any difference. Instead I felt pretty clearly 4 excrutiatingly painful injections and then the very horrible sensation of 4 extremely long screws go into the bone of my skull. Even though tightening the screws was over it still felt that things were incredibly tight, a bit like my head being in a vice.there’s no other way to say it.It was f****** horrible, easily the worst experience of my life.After this awful experience I was taken down into the bowels of the hospital (it felt like 20 floors underground so a brainsurgeon called Dr Butler could clip my head using the frame into a special apparatus and give me an Angiogram to precisely get the co-ordinates of the AVM relative to the frame, After this process they left the apparatus attached to the frame around my head. This, together with the frame was now too heavy for me to use my neck muscles to lift my head.I was then taken for an MRI scan, This imageof MRI scanners being these hi-tech bits of equipment in softly lit rooms is totally untrue! The MRI scanner at the RLH looked like an old piece of technology abandoned on a street corner! Not only is being in one very claustrophobic but it is also bloody noisy, it feels as though some ball bearings are whizzing around you. I suppose this is better than a massive dose of radiation but I’d hardly describe the procedure as relaxing and not being able to move at all was grim, not onlt did I feel like I looked s bit like Hannibal Lecter, I was also in pain and unable to move. The other thing that was on my mind was that once I’d had the Gamma knife procedure it would then take a couple of years for the procedure to become effective, apparently, for the quickest of seconds I contemplated whether brain surgery might be more effective. I thought back to a program I had watched called ‘bodyshock’ which had highlighted how sensitive the brain is. It basically persuaded me that if anything went wrong at all in the procedure then I would probably be a goner or that I could wake up from the op a completely different person. Many might consider this a good thing!

Anyway, I went ahead with the procedure and was horrified to discover took over two hours rather than a quick zap and ‘job done’. Instead they had to clip me in the machine ( using my head). The Gamma knife team would then retire to the observation room behind some very thick glass to sadistically observe. Once I was clipped into the machine it was on autopilot and run by computer. This was a relief because I figured that a computer had a better chance of hitting the target than a bunch of people aiming it manually. The worst thing about the entire procedure was that for more than two hours the machine dragged me into position by my head. Extremely painful I should say and made worse by my constant fear that the screws in my skull felt as though they could tear out when the machine moved me, combined with my fear that the Gamma rays might be hitting the wrong spot and thatin two years time I could inexplicably drop dead or turn into the incredible Hulk, or something. Luckily things were made a lot better by the arrival of my parents (just off a plane andNatasha and her sister Sally Anne.After the worst day of my life, it was so nice to have a shoulder to cry (and cry) on. Two words for future victims of this procedure. General Anaesthetic.

1 comment:

nilo said...

I thought I was the only one terrified by the very name of this procedure. We should get matching T-shirts.

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