24 Jan 2008

Post number 6: The Frank Cooksey Rehab Unit

Now, this has taken me the best part of three days and getting chucked off the shared computer a few times so I hope it makes sense! Having already established I was feeling pretty low, I left Charing Cross for my first rehab unit – the Frank Cooksey at Kings College in sunny Camberwell. Now, The FC used to be part of the well known South London looney bin, the Maudsley Psychiatric Hospital. As such the FC still looked like a maximum Security nuthouse. Once inside however most of my experiences were to belie this grim exterior, I say most… The first thing that was immediately obvious was that I was on another shared ward with approx 10 other patients. Luckily for me I immediately struck up a rapport with a very nice and interesting 70 year old cockney bloke called Harry (he certainly didn’t look or behave like a 70 year old). He was definitely a cockney though. Indeed one day his charming wife, Joyce, brought me in proper pie and mash and liquor – thankfully I was spared the jellied eels, Although these were the high Point for Harry! I was half expecting Joyce to come in dressed as a pearly queen one day. I felt terrible for Harry. He was only there because an operation for arthritis on his spine had gone wrong, when he was discharged several months later he was told he was unlikely to ever walk again. How hard for him and his family. When I had settled into the FC, I began to notice more clearly a problem that continues to make everything (and I do mean absolutely everything) difficult - that of my chronic fatigue… It makes all my therapy much harder (physical and mental) It has definitely been one of the hardest things about this whole episode, I’d even go so far as to say it’s probably my most disabling symptom, sitting nicely alongside not being able to walk at all or see or talk properly. It’s frankly as helpful as a kick in the teeth.… I used to have plenty of energy, now no matter what time of the day it is and regardless of how much sleep/rest I have I always feel exhausted, I can barely keep my eyes open or hold my head up, even holding a conversation is tiring. Looking/concentrating on a single point is now difficult, which is why eye contact is almost impossible. Even watching TV is almost not worthwhile… Vaguely cerebral films – waste of time… even typing this is exhausting but I feel it’s worthwhile. It all used to be so different; I used to be able to type with both hands, play two rounds of (half decent) golf in a day, go to the gym before work to sweat out any traces of a hangover – go to the pub and chatter hours of nonsense with my mates… Most importantly go and see my long-suffering (now sadly former) girlfriend whenever I liked or more accurately when she wanted to see me. I could walk up and down hills, ski down mountains, lie on beaches and mix loud electronic music. My stroke has now meant I can do nothing but aspire to all of these things (except perhaps the music bit) and throw the fatigue into the mix and an already tall mountain to climb feels taller than Everest. What makes it even worse is that among the hundreds of other brain injured people I have met, I seem to be the only one suffers from fatigue like this (sure, they all say that they feel more tired,but they all seem to cope with it much better than I think I do which is weird because I used to be pretty good at dealing with tiredness and then getting on with things) this makes me worry that I have done much worse damage than everyone else and that I am doomed to feel this bad for the rest of my life. It makes me feel like screaming. Indeed, I now know why children are such bastards when they’re tired!
Good god, did I go off on one there! Thanks for bearing with me during my more introspective moments. Belle du Jour this ain’t but back to the sunny climes of Camberwell and the Frank Cooksey. What made the place almost nice was the staff. The Clinical staff and therapists were lovely, the whole place was run by a really nice man named Prof David Rushton, he was never patronising or lofty, and seemed to make a special effort to keep you in the loop (not something they usually do , certainly not since). His numbers 2 and 3, Dr Luff and heavily pregnant and glowing Dr Rebecca Darcey were equally friendly and never too busy or too important to stop for a chat or a joke. My favourite people were undeniably the therapists. Firstly the always smiling and unusually sweet (for a Saffa) occupational therapist Andrea, then there was Sam, the physio, who jokingly told me that her psuedo claim to fame was that Jason Orange once asked her out, To be honest I wasn’t surprised, she was a vision of loveliness the likes of which I had rarely seen. No small surprise that I particularly liked physio at the FC. My main speech therapist, Annabel always had me in stitches of laughter, Then during my last couple of months at the FC there were a few short-term therapists who were brilliant. Darren, an Aussie (I bumped into him a year after I left Kings and the Putney staff member I was with described him as the type of aussie who was a little too good to be true, All he seemed to be missing was one of those hats with corks). Then there was kung, another aussie (via Korea I think) occupational therapist,him and Darren were a great comedy double act, mate. Unfortunately, the fact that England had just been pasted in the ashes on Australian soil robbed me of much of my ammunition so it was next to impossible to out-chat them.Next there was Kristy ( a gorgeous blonde Aussie speech therapist) her, Kung and Darren used to gang up against the patients in hangman, or what I termed Australian therapy. On, one particularly memorable occasion, the topic was rivers. They helpfully went for, Murrumbingee, bloody Australians! .Added to these comedy characters let’s not forget the ever important nursing staff who seemed so caring (names that immediately spring to mind are Andrew, the hilarious ward manager, Yomi, pronounced ‘yummy’’ the lovely Nigerian charge nurse who seemed to go out of his way to make sure you were comfortable, Grazia a perpetually smiling and cheerful Phillipino lady, Sandra – an always stressed but always kind African lady from Peckham, Cathy and Chris, two older ladies who represented experience in nursing, you always felt safe when they were around, and Alex and Clare, delightful student nurses who arrived towards the end of my incarceration in Camberwell, and acted as a much needed change of scene. Even Sue, the rottweiler of a dinner lady was always good for a laugh. Especially her comedy dancing to ‘walking on sunshine’ during the summer party, not forgetting Gwen –The often terrifying but warm hearted Caribbean nurse.. who’s ‘seen it all before’ attitude often entertained me even after she ‘unintentionally’ gave me a grade 1 haircut. While she was saying,’I’m a nurse, not a hairdresser, at least I tried’ I was thinking, I wish you hadn’t… But there was a silver lining in that I looked like a thug in time for the football world cup, you know the one that we lost on penalties to Germany – I know that probably doesn’t narrow it down but I think it was the most recent one, yes, it must have been. Despite there being a lot of surprisingly positive stuff it wasn’t all sweetness and light. There was Luz, the sadistic Phillipino Nurse, whose face permanently resembled a bulldog chewing on a wasp, she seemed to take rather too much pleasure at the obvious discomfort I was in when she gave me my medication (which tasted vile. I once complained about her to Annabel (my then keyworker) I chickened out of saying what I really thought and rather weakly plumped for ‘if I saw her in the street I would certainly not smile at her. What I actually meant was that I wouldn’t piss on her even if she was on fire. Harsh, but fair I say. There was also Robert ,one of the other patients (normally I will try and lay off patients but he definitely deserves a mention in the negative column bec ause he was especially horrible. You know what, sod it, the gloves are off because I’ve just thought of one or two others that deserve a dishonourable mention. Back to the unpleasant Mr Robert. Firstly, he looked like a cross between Hitler and Desperate Dan and he seemed only interested in two things, Eating and Shouting. Sometimes he would combine the two and shout for food, He would shout at all times of the day or night like an 18st spoilt baby. When I was told by the friend of another patient, that rest was almost as important as therapy I hated Robert evemore. What annoyed me even more was how ungrateful he was to the staff. I am in awe of how they put up with such a rude Oafmy enduring memory is still yet another poor one. One day, quite early on, they sent me down to the main hospital for a thing called an angiogram. This is a rather clever surgical technique where they put you on a rather large x-ray machine and make a small incision in your groin, then float a tiny tube up your carotid artery into your brain , add some special contrast then use the subsequent xray pictures as a very detailed picture of the blood vessels in your brain. So on the one hand the live xray pictures can be used to navigate through parts of the body (i.e. the brain) it would be too difficult and dangerous to operate on directly. It was through this technique that they discovered the aneurysm and AVM that caused my haemorrhage in the first place and through this method that a far too youthful and charming guy to be a sort of brain surgeon called Neil Deasey tried to get rid of these pesky weaknessesses in June 2006.It was basically lower risk brain surgery and after he had already told me he wouldn’t proceed with the procedure during it if it looked too risky, he decided not to continue with the procedure when he found (on his xray screen some healthy arteries running off part of the AVM. To this day I only vaguely understood what on earth he was on about and so am grateful he never took the risk. Had he taken the risk and blocked up the wrong blood vessel I would probably have died
So I was therefore condemned to have radio-surgery which was probably the worst day of my life (certainly my conscious life) so when you consider what’s gone before that’ll be another cheery story but that’s for another day because I’ve yet more to say about my time at Kings. Now the Angiogram is a great procedure in theory but not when you get MRSA in the incision area. As you may recall it was made in my right groin area. Sadly I’ve got no faintly disgusting or humerous groin stories. Instead what I will say was that it was painful enough to completely immobilise my good leg for about a month, a nightmare in itself because all physio was impossible as was any prospect of getting out of bed. Now the standard way to treat MRSA is with an IV drip of two incredibly strong antibiotics. Bankomycin and miripennum (for some reason those names just stuck). I was particularly furious at the way they went about it , firstly they chose the vein on the inside of my right elbow as the IV insertion point. Secondly, it took them about an hour to secure a large (and sharp) IV needle in my arm ,they then told me not to move my arm – bloody brilliant, I could no longer move ANYTHING, because they had just told me not to move my only mobile limb, So not only had they inflicted loads of unnecessary pain( by trying to stick a needle in my sentient right arm when they could have used my paralysed left which still to this day has little or no feeling (Useful for injections which I hate) but they decided that it would be better to inflict pain and effectively paralyse me. A classic example of non thinking and an inability and unwillingness to even try and communicate with someone with communication problems (I had only just began (very weakly) to speak at this stage) To add insult to injury they then cocked up the rate at which they added the antibiotics to my bloodstream resulting in me getting an attack called ‘red man syndrome’ I literally thought I was going to die right then and there! I itched all over and it actually felt like I was under attack from inside my body. I can’t remember ever feeling so scared. Luckily lovely Sam was there to stop me scratching my skin off. In my next post which I’ll hopefully be able to do in the next couple of days, I’ll attempt to describe my initial experiences at the Royal hospital for nuerodisability in Putney.

20 Jan 2008

Post number 4:more Charing Cross

.Well, here we are – Sunday morning, mid January not much else to do but continue this stream of consciousness… where was I? I believe I was somewhere in Charing Cross hospital just having had my life saved by some miracle – I then apparently contracted Pneumonia and had to have a lot of fluid pumped off my lungs ( this would almost certainly have been curtains had I not given up my disgusting 30 a day cigarette habit in July 2004, courtesy of Alan Carr’s ‘how to give up smoking’ course). So I was apparently moved from intensive care to one of high dependency wards on the 10th floor. My memory of Charing Cross is weird and patchy. I have since been back for an appointment with some specialist and I recognise nothing. The only thing I have a clear memory of is the lovely therapists who were so kind to me, Barbara the speech therapist who, together with my sister, taught me how to speak again, gorgeous Orla and lovely Claire who made physio sessions bearable, my many visitors, especially my incredible family who I’d ruined Christmas for, Natasha, without whom I’m convinced I would not have lived, several of the directors of buying from John Lewis who apparently came to see me quite soon after it happened. Also, although everyone deserves a mention, a special one goes to my great mate Tony Reid for his great skills of organisation and of raising awareness amongst my friends as to my plight. These are my better memories but as I said earlier and I’m afraid to say that my stay in each hospital was characterised by one abiding bad memory. My Charing Cross one is because Tony had organised a whip-round and very kindly got me a portable DVD player to go some way to assuaging my obvious boredom. This instantly became my most valuable possession. So, if you will, imagine my shock and despair when I saw one of the nursing assistants steal it in the most disgusting circumstances. I still remember the incident clearly…one of the male west African nursing assistants (I know this because I had overheard one of his few conversations in English with another similar nursing assistant – another bugbear of mine (the rudeness of speaking another language in front of people who obviously won’t understand when they can just as easily speak English). Anyway, when the staff nurse was off the ward he started going through my stuff, when he came to the DVD player he stopped and admired it. He looked around once and slowly closed the DVD bag. He looked up again and saw me staring right at him. He winked at me, then did’ the shush sign and finally smiled at me before making off with it. Obviously at this time I could neither speak or move. I don’t think there has ever been a time in my life when I have ever felt as pathetic and terrified at being so utterly vulnerable. I was to stay here till mid February. Apart from that awful recollection one of the worst things about this time was the incontinence. For a28 year old not to be able to control his bladder is at best humiliating, at worst, pathetic. In the very early days (on admission) I apparently had a catheter but they soon get rid of this because they are prone to infection and apparently it’s important that patients don’t become reliant on them, or something. So while I was at Charing Cross I was Forced to endure the ritual horror of this thing called a convene. Imagine (if you will) something a bit like a condom except with a tube attachment at the end which drains away into a bag. In theory fine but in practice a nightmare if it keeps leaking or bursting or coming off. The slightest malfunction had one horrific result. So much of my conscious time at Charing Cross was characterised by unpleasantness. I felt so humiliated.

19 Jan 2008

Post 3 - 1st memories of Charing Cross: - Dec'05

For, my third go at this blog b usiness I thought I’d try and describe my experience of doing the grand tour of London’s hospitals –not something I’d wish on my worst enemy… My most memorable experiences are only negativeones I’m afraid – you’ll just have to forgive me for that. OK, so firstuo – Charing Cross hospital in hammersmith… first of all, before I launch into a rant, I have to acknowledge that I am grateful to these guys for saving my life in the early hours of Christmas day 2005. I am in awe of anyone who has a job of such responsibility and is able to perform when the rest of the world is asleep or letting its hair down. My 2nd slight caveat is that for the first 3 weeks of being in charing cross I was in a coma. According to my family this was just as well because of the many indignities I had to suffer. When I eventually woke up Icouldn’t speak(many would consider this a blessing, this would continue for another month)and was unable to move anything except my right hand and rightleg…Tothis day and forevermore I put the reason for waking from this coma down to my wonderful girlfriend (at the time),Natasha keeping up a bedside vigil for the whole time, talking to me and holding my hand. From time to time I was apparently able to ac knowledge her presence by squeezing her hand – God, I can barely type this.
Anyway this isn’t really a memory, more a collage of recollections I have garnered from other people. One thing that has shocked me most is when Natasha told me that on admission to charing Cross apparently my chance of survival was ‘about 1%’. This is pretty damn close and still terrifies me.

18 Jan 2008

Post number 2: My ruined eyesight

I’m going to have another go at post number 2 because additional to it taking me half an hour to find the new post link because of my terrible eyesight when I pressed the publish button I thought I’d managed to wipe out post 2 so I rewrote most of it in word. See what we rely on our sight for! What a shambles, Please don’t use this chaos as an excuse to stop reading unless of course you want to. My brain can no longer control the movement of my eyeballs which is apparently technically called a nastagmous ( probably spelt that wrong, never-mind). This combined with occasional bouts of double vision has meant that reading is pretty much impossible unless the font size is about 30 and even then it is a challenge to read unless the line spacing is double. Even reading like this is exhausting. Bizarrelly, everything is in focus, ie. there is no blurring. I can't work this out at all... So my brain can focus my eyes but it can't control their movement, surely a much easier thing to do than focusing, once again the complexitities of the human brain are completely beyond me… Or anyone else for that matter. Especially neurologists or opthamologists it seems, the firs tnuerologist I talked too told me that over time my sight would settle down and improve until of course I went to Moorfields eye hospital where a horrible consultant called mr Lee shattered what little hope I had by telling me that my sight would never improve, The only way of fixing it would be to re-wire my brain ,obviously this is not possible. He described my stroke as ‘a bomb going off behind my eyes’. I couldn’t have felt worse if he’d punched me in the stomach. I think a dalek would have had a better bedside manner.

My first post

OK, so this is a little late in the day and the effort of setting this up almost caused me to throw in the towel because I am particularly knackered today (again for noreason I can fathom) The idea of writing a blog came to me in a dream last night. I don't tend to remember dreams so me being here and doing this at all is already odd! But I do remember thinking at the time that it was abrilliant idea because it should provide a good mix of self-indulgence and catharticness (I hope that's aword). Importantly in a blog - noone can answer you back!neither do I have the mental energy or the one fingered typing speed to engage anyone in an argument. I can barely do it verbally!



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