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27 Feb 2008

Post number 20: The soc services discuss their potential involvement in my future

Yesterday was a funny day and I don’t mean of the’HaHa’ variety. It actually started OK with a long meeting (long by my standards means 1 hour+). I usually hate meetings because now they seem to generate even more hot air than they used to. I used to struggle to stay awake before my stroke now it’s a mission and a half. Most things over half an hour are barely worth thinking about. For starters my concentration span is a joke . After about 15 minutes I have to start asking people to repeat themselves. It’s pretty pathetic.
The meeting was between my parents, A social worker from Surrey called Kris and a lady from Southwark YPD, believe it or not called Alf. I’d heard her name bandied around a few times. She was basically the big cheese at YPD and the person who held the Purse strings for the NHS budget in Lambeth, Southwark and Lewisham.I probably owe this woman my life and I’d never met her! Anyway, unlike a lot of NHS personel she appeared to know what she was talking about. She was concise,to the point and very knowledgeable and was able to offer Kris some good advice on what would be helpful for my continuing care when I’m living more independently in Oxshott. She was very encouraging about how far I had come and gave a very clear explanation of why she put so much truck in getting peoples mental state as ready as possible for the transition back to the community. It really got me thinking. Without all this Psychological input that I’ve had there is no way I would have accepted having to give up my home in Brixton and my former life after rehab (both of which I quite liked for some reason) despite having practically no choice. in favour of this new life of disability that I’ve been dealt. So that was the meeting yesterday morning – Apart from feeling completely destroyed by the end of it, I also felt pleased to have met this mystery person (Alf) and that someone good and importantly someone who felt intelligent, understanding and above all trustworthy from the social services, (that makes it sound like the rest are Charlatans which is probably true). After the meeting I had a meeting with Amanda. A lovely lady from the Stroke Association who has become friends with Ian and Ruth ( Ruth was in the FC at the same time as me ,Ian is her inspirational boyfriend , Ruth is probably in her mid to late 30s and has recovered remarkably well from her brush with death with Ian as motivator in chief and Amanda as inspiration… I have been so lucky to meet people like this along the way.In no small part is this down to Natasha who has worked tirelessly to find the right people and stay in touch with people who may give me a glimmer of hope that my future is not as hopeless as it at first may seem. So far, things had gone alright and then the whole day got turned on it’s head…

After the meeting in the morning my parents set off up the hill to go and have lunch in the hospital canteen, about 15 minutes later my rather flustered looking mother came back to tell me that dad had been unable to make it up the hill because he had been out of breath.The thought of this horrified me. Dad may be the wrong side of 70 but he’s strong as an ox. This had never happened to him before.. 15 minutes later mum came back down and said that they’d put dad in wheelchair and then had him examined by the head doctor at the RHN and that the whole thing was probably caused by some virus that was doing the rounds. Well, it was a huge relief it wasn’t anything like a heart attack, because that usually is curtains. My mum informed me that they were going to go and have some tests done at the local hospital in Tunbridge Wells. So they left, I have scarcely been so terrified. All I could think of were my mother telling me that the last couple of people she knew of who complained of being breathless ended up being diagnosed with serious Cancer. I was hoping it was nothing like this because treatment for cancer is horrible and makes anything I;ve been through look like a flu jab. Early indications were that it is a clot on the lung. I’ve got no idea what this means and knowing this has done little to calm me down bar a couple of texts telling me how treatable it is. I am still terrified because it has made me think how difficult life would become without my dad for everyone, and it’s hardly easy at the moment! On the face of it, my mum and Dad may seem a bit of a weird couple but I have noticed, particularly over the last two years ( when I have probably seen as much of them as when I was a baby, a sobering thought) That they both need each other to survive the many pitfalls of the modern world. Dad is and has always been the practical one, mum would be lost without him… The relationship works the other way round too. Mum is the gregarious one, The sociable one,Dad is more solid and austere. At meetings mum usually makes the running (sometimes to her detriment) and Dad takes the notes. Thank God for this approach because between them the right questions get asked. Mum, a bit like a Blunderbuss and Dad more like a sniper with a silencer without enough bullets to get the job done! Between them they get the job don. They are a team that usually gets the job done and without each other god knows how we’d all manage. I know my life would be a shedload harder and I’d miss either one horribly – dad is sitting in ward ten at the Kent and sussex hospital right now waiting for the results of some more tests, so the early indications of it being a clot could be wrong. I am waiting for Mums phonecall. I can’t remember being this scared!

24 Feb 2008

Post Number 19: Agency Monkeys

The problem with writing so much down is that sooner or later you are bound to encounter writers block. I reckon it’s a particular problem when telling a true story. Once it’s told, it’s told.
Now that I think about it, I probably could have been more floral and descriptive, even added the odd slight embellishment but when you’re desperate to get as much typed as quickly as possible and you have my sorts of disabilities when inputting (ie fatigue, partial sight and having to type with one finger) then you can’t be @rsed to do more than is required. I’ve thought of something else to add and I’m concerned that This blog is becoming dominated by tales of woe. I’ll give you an example of how energy is at a premium. Since I’ve been in hospital one of the things that has frustrated me most is constantly having to repeat myself. Clearly intelligence or having English as a first language is not a requirement when selecting caring staff (particularly agency care staff) This morning when I asked the agency carer ‘to get the call-bell from the edge of the sink and put it back next to my bed, please so that I could call someone to get my wheelchair after I’d finished dressing myself on mybed. At this she disappeared into my bathroom and re-appeared carrying my laundry bin. I mean how do you confuse ‘laundry bin’ with Call-bell’ and what possible use would I have for a laundry bin after my shower. This sort of thing has happened countless times.My voice isn’t perfect but it us pretty clear.It’s just atotal lack of common sense and the ability for abstract thought! God only knows how people who can’t speak cope when dealing with, no there’s no other word for it ‘imbeciles.. Iam so looking forward to being able to sift out imbeciles when I get out of institutions because I will be able to interview potential carers.
Another thing that you are unable to do in hospitals is choose who your fellow convalescees are. Those of you who have generously and patiently read all this blog will remember my description of ‘yardieboy’.
I am now pretty scared that him or his mates may hand me out some ‘justice’ ‘Jamaican style’ after me and him almost came to blows a couple of days ago. ] I went into the kitchen for lunch and enquired immediately @what’s that disgusting smell?’ Yardieboy replied ‘smoked fish and rice and peas, do ya get what I’m saying?’. I replied I understood you fine, I just don’t like the smell’ He instantly said ‘well f**k you and started to make for me in his wheelchair untilone of the other patients told him to calm down. No wonder I’m feeling so fed up here. The good staff are hardly on and seem to be replaced by agency eejits and I feel vulnerable to harm at the hands of other patients. My only outlet is this blog. Moving to Oxshott will be a big relief!

22 Feb 2008

Post number 18: the RHN threaten legal action

I was somewhat amused yesterday when I was told that the RHN lawyers are at sixes and sevens at some of the content of this blog. I have taken a bit of informal legal advice myself and apparently I’m within my rights to tell them to sit and swivel. Frankly I don’t see what they could possibly gain from suing an impoverished, depressed bloke whose had a stroke. What could they possibly gain? All in all it saddens me to hear that the RHN has in-house legal counsel. Yet more money down the toilet and not spent on the people who really need it, the patients. Making sure the hospital is legally protected, Obviously as important as the thousands they must have spent on that new carpark and landscaping out the front of the hospital, a tiny portiom(tiny!) could have been spent trying to hurry up this growth hormone injection which they mentioned as far back as November. This may go some way to alleviating my crippling fatigue… but no, I feel that criminal incompetence has served to keep me feeling like s*** for the last three months. No wonder I hate this place! This may sound a bit like “come on then, if you think you’re hard enough!” because frankly it is. The RHN haven’t got a leg to stand on and they know it. God, this place makes me angry. No s*** I hear you say

20 Feb 2008

Post number 17: Guilt at feeling low

I am a little ashamed of how fed up I am ATM. One of the things that has really struck me is that I feel I am letting people down if I say I am tired or depressed or my personal favourite, being told off by my mother for example, if I turn down a physio session when I’m not feeling up to it…I’ve already nicknamed my physio, a very nice kiwi called Megan the ‘smiling assassin’ and her Hispanic assistant Juan ‘the Spanish Inquisitor because I sometimes feel that physio sessions feel like some form of torture. It’s small wonder I don’t always feel up to them! But still I get told off for not taking advantage of the very great opportunity that I have been given being at the TLU try saying that from where I’m sitting. But what does eat me is that the more tired and depressed I am the less fun I am to visit and talk too and this is when I need people the most. I think I had a slight change of heart yesterday afternoon when I realised how much trouble a few of my friends have gone to, to organise a special one-off event to raise money for the Dom Pardey Trust and to take the trouble to make sure they chose a venue that most people will love and is accessible to my wheelchair so I can actually come. This is just the latest example of a string of incidents that make me feel an enormous debt of gratitude to those who have done what they can to improve my poor excuse for a life during the last couple of years. Sure, there may be the odd occasion when I sound like I am in the depths of despair, but I usually need something to jog my memory or to’have a stern word with myself’ and I’m soon right…There’s also a special apology reserved for my seemingly tireless Mother – She may be from the generation that don’t believe in tiredness and depression and that a simple “pull yourself together” will suffice but she’s not all bad, if only I could get rid of her ‘daily Mail’ habit…

19 Feb 2008

Post Number 16: Not understanding how I've helped (?) some people

I am very concerned that the following may be a little too much for anyone, maybe I shouldn’t write things on Mondays and I’m worried that this sort of posting might scare people who’ve never met me before(especially as I’m looking for random flatmates ATM) or those who I haven’t seen for years think I’m some sort of terminal misery. I may get pretty grouchy from time to time but I’m pretty sure I don’t feel this bad all the time So what’s eating me today? One of the biggest problems I have faced is a complete lack of self – belief and occasionally a lack of belief in the opinions of others. I have lost count of the number of times people have said to me “I think you’re doing so well” or ”I think you’re amazing” or “I think you’re so brave” etc etc ad infinitum. I wish I could bask in the warm glow of such nice comments but I can’t because I don’t understand them. Being clear I can’t do most things by myself. I can’t walk independently, I can’t read books or newspapers, I can only read emails by selecting the text, copying it into word and blowing the text up to size 30 and increasing the line spacing, I can’t write because I no longer have the fine motor control necessary to stop my hand shaking, I can’t speak or Concentrate without enormous effort. I can only type with one finger (on a special keyboard with large keys), I need a lot of help preparing food so I am able to eat it , I can barely keep my eyes open and always feel exhausted, I cannot pick myself up off the floor, I am terrified of being alone, and frequently cry, I can’t earn money and have to rely on state benefits and the amazing generosity and charity of friends and family to survive, I’m 30 years old for christ’s sake, I’m a shadow of my former self, I feel like a pathetic loser and a complete failure and what’s worse? I hate myself even more for writing this and thinking this way but I keep being told how lucky I am, pardonez moi if from time to time I don’t feel lucky or sound grateful or positive enough… OK, so I’ve said my piece and I hope made it fairly clear how I sometimes feel, apart from this slight nihilism, I’m a barrel of laughs! Above all though I’m desperate to get out of living in hospitals/institutions which I have been incarcerated in for more than two years. I need to get on with my life, in whatever shape or form it takes! I can’t wait to share some genuine good news and for once since my stroke not feel like sh **.

13 Feb 2008

Post Number 15: Derek and the finger snappin' top 100

After yesterdays cheerfull post that honestly made me cry, i think that the subject of todays post should be rather more lighthearted and focus on the people who have made me laugh during the last two years. There is no-one else I could start with but Derek, the Glaswegian nurse from the TLU (probably living it up in Sweden now). Del and I invented the fingersnappin' top 10. Inspired (dunno what the opposite of that is,deinspired anyone) by having to listen to Tragic FM over breakfast most mornings. It isn't about the top 10 oldies or about the top 10 songs that got us clicking our fingers, it was about the top10 artists who made us so angry that we physically wanted to snap their fingers. A rather amusing and sadistic slant. On the sad day that Del left, Mick Hucknall was top of the snaps. (very) closely followed by Phil Collins and usually in the mix were Chris de Burgh, Daniel Bedingfield, Elton John, Gareth Gates, Will Young, Barry Manilow, Amy Winehouse and Leona Lewis (later additions by yours truly) and numerous others! Whenever one of their songs came on the radio (which with Tragic they did, a lot) Del would say that the worst efforts would make him want to stop what he was doing, drop everything and go and find them. This particular expression of outrage, what we called 'coming over all Begbie (after the comedy Psycopath in trainspotting). A film I watched about 4 times after meeting Del because i figured I needed some anti-Scottish material. There are so many great lines in it!,apart from slightly glamourising Heroin, it really is a work of genius!

Casting my mind back a bit further, I was always entertained by Harry and his visitors (remember the cockney geezer from the frank Cooksey. On one occasion Harry was watching some program about football and they were doing something about Newcastle. Harry was quietly watching it and suddenly and inexplicably said under his breath ‘ c***s’. To this day I’m still not sure what was so funny about it. I think it was just that a 70 year old man had just uttered the worst swear word in existence for no reason. Not to forget some of his visitors,There was his 80 year old(whodidn’t look a day over60).I think she is best described as being identical to the foul mouthed granny from the Catherine Tate show. Damn she made me laugh! There was also Pete, another patient and alround cockney geezer, when asked a question about boxing his answer almost caused me to have a hernia. He simply replied rather gingerly. , “Joe Calza…” “Joe Calzaa… “Joe Calzar… “ that Welsh Geezer.I almost brought up my breakfast through my nose. Then of course there was Darren, I think it’s difficult to top the ‘Murrumbingee’ incident…and me taking the piss out of Andrea when she was waxing lyrical about her painting her toenails. Then there was Andrew, camper than a row of pink tents. He once said to me when I was having a particularly bad hair day…” I think we had better phone the Cappucines and tell them one of their monks is missing. CHEEKY BASTARD It may have had an element of truth to it and precipitated my accidental grade one haircut but dems da breaks. More recently things that have tickled me are Nicole’s (remember the pretty one at the TLU) stories of how we used to drink until we were sick when we were teenagers.Teenagers? I remember doing that as recently as when I was a student! Ican’t remember any specific incidents on Drapers but Brad was consistently hilarious. In fact there was one time when he told his mum that he was taking a fifth wife (an African thing apparently) his mum had a heart Attack, apparently she didn’t really. I also love Toni’s (the other pretty one) impressions of Peter Kay.I wish life now was this never ending stream of comedy it sounds like. Sadly it’s not.

12 Feb 2008

Post Number 13: Trying to Find Housemates

Ok, so I’ve had a day or so to ruminate and the thing most on my mind is how best do I advertise for two completely random flatmates from the end of march in Oxshott in Surrey ( probably where I’m going to live – I’ll explain why later) It would be nice just to be able to rely on existing friends, but I fear that too many people I know are sorted and are too used to living in town and the lure of cheap living in commutersville with yours truly might not be a strong enough draw. So if anyone knows anyone keen to live in a nice house in sunny Oxshott for approx £200Pcm then get in touch! I am not looking for a carer. I am just looking for flatmates who, more often than not will be around in the evenings to help out with dinner and to be someone to chat too because I’m not yet confident enough to be truly independent…Iwon’t be until I retain the ability to walk, pick myself off the floor and go some way to retaining the use of my left arm and leg. These people ccan be of any age or gender and have zero caring experience and I expect them to be at some sort of job during the day when I hope the social services care package would take up the slack. I know it’s a big ask but after the last two years I deserve some luck! All that the right people need is intelligence and a sense of humour because they are the things that in this situation I would value most highly, that and not being allergic to cats. I definitely intend to get one and soon. Also suggestions as to where to advertise are always welcome,ATM I’m thinking the Gumtree, Loot, Oxshotts local rag and either(or both of) the John Lewis Victoria Chronicle) or the JL gazette. Oxshott’s actually a rather nice little town. A bit different from where I used to live, Brixton! First things first, I imagine far less crack changes hands and there are practically no junkies or wrong ‘uns although what goes on behind the net curtains of Suburbia may prove me wrong! Also, and I don’t know if this is a good thing, but over half of the Chelsea FC team live there (replete with WAGs). If it’s good enough for them it must be good! Although I’m told it might be something to do with the proximity to the training ground in Cobham. As far as transportlinks are concerned Oxshott is fantastic. The house itself is a =short walk to the station… not for me because I can’t walk and then I’m told twenty minutes into Victoria. If you need to travel by car, there is easy parking and Oxshott is located where the A3 meets the M25, ideal! Would suit students, especially medical students or travellers looking for somewhere cheap to live and even current JL employees.

Post Number 14: Discussions on moving to Oxshott

That last post made me feel a bit dirty as it was fairly shameless advertising. I hope that I haven’t sullied this blog for anyone, so let me continue – back to what a travesty my life has become. I have just had the most dreadful visit from my mother and am now thoroughly depressed and convinced as to the hopelessness of my future. Now don’t get me wrong, my mother is a legend and has been a total support throughout all this. Her love for me has been virtually unconditional and It is largely down to her that this solution to move to Oxshott has presented itself. This in itself is virtually a miracle but she has done everything in her power to make me feel that things aren’t going to work out for me. Every-time I mention any item of furniture that I want to put in my new house. She always says ‘how’re you ever going to afford that? You’re being totally unrealistic’, in the same breath she also mentions hysterically how she’ll never be able to afford to furnish her own house because it’s hopelessly underinsured, her victim complex doesn’t end there – tragically a couple of ladies close to her in age have just been diagnosed with cancer.This is utterly tragic for those involved but given the recent bad luck the Pardey family have had has convinced her,utterly convinced her that she’s next. Combine this with the continuous scare stories that ‘we’re all going to die in that awful rag that women of her age seem to read ‘the Daily Mail’ or ‘the Daily Hatemail’ as I prefer to call it. I am the last person who can deal with her complex and everytime she comes to see me I get all this laid on me. Before my stroke I might have been able to deal with this. Now my mental state is far too fragile. I may have been lucky to get this far but it’s small wonder that I’m in such a bad way mentally. Thankfully,I just had a hilarious visit from Simon, Shaun and Renae which has really helped. This is the difference people can make.

9 Feb 2008

Post Number 12:Other Inmates

I am getting one or two messages saying that I sound a bit fed up in this, that is because, sadlyI am – Despite the fact that I’m getting on fine with the staff and day by day I am appreciating more and more how beautiful (as people OK) Nicole and Toni are I am still utterly fed up with the TLU, primarily because I’ve been here so long but also I have so little in common with the other inmates. For example one of them is the stereotype of all that I despise( having lived in Brixton). A former crack dealing yardie gangster. All he does is boast about how much money he has and the designer stuff he used to buy. Just yesterday we had lunch outside and it was pretty sunny so I elected to wear my ‘cheap as chips’ shades that I happen to like because I think they suit me. Yardie boy complemented me on my shades.He then proceeded to say loudly that he used to have Gucci shades, it was all I could do to stop myself saying. ‘who cares about the brand, as long as you think they suit you. He doesn’t care about that. I ask myself if I’m being intolerant or unfair and then I’m reminded I’m not when he comes round the corner blaring indescribably bad ‘Gangsta Rap’ out of his mobile. He does this a lot. I also get wound up when his gangster mates come and visit him and sit around the kitchen table and talk about guns and cars.Every phrase is ended with the yardieism ‘you get me’ .I am also fed up with being ‘cuz’ or ‘blood’. There is also another guy with an extremely loud voice. To be honest I don’t understand a word he says. He sounds like an Irish drunk. This might be a little harsh of me because his brain injury might partly be responsible for his incomprehension. I don’t doubt that he used to be a drunk though because he’s desperate for any alcoholic drink. I just wish he’d turn the volume down. There are three more people here, Two of whom can’t speak ( don’t get me wrong I can’t even begin to imagine how frustrating life can be for them) and one other guy who is at least intelligent but because his big passion is Chelsea FC,I have less than nothing to say to him. There was also until recently this Turkish guy whose speciality was making people feel uncomfortable by staring at them or a particular favourite of his was staring threateningly at your food and occasionally making grabs for it. I used to joke to myself that his disability was either his personality or his burgeoning weight. I say this becauseit seemed his only friend was food. I say this because during his time at the TLU all he did was get fatter and fatter. I never saw him do one ounce of rehab, all he did was eat and sleep ,occasionally refuse to shower so he stank and issue orders to the staff without so much as a please and never athankyou.. brain injury or not, what a horrible man, so it’s small wonder I’m fed up having to live in such close proximity to people like this and few opportunities to unload any of this and often I am too tired to articulate any of this. Oh dear, this post sounds terribly negative. I find it so hard to be positive, obviously feeling lucky to be alive only lasts so long…

7 Feb 2008

Post Number 11: Dom Angears amazing Poem

So that last post was a bit bloody depressing, well recalling it and writing it sure upset me so I thought it might be best to re-start with something a bit more lighthearted! So I thought I’d post a poem written for me by one of my most amusing ( and obviously rather talented) friends Dom (yes, another one) Angear. It is probably the thing I have received that has moved me most.

In my mind I thought to see you might break my heart
But I found myself craving a ride on your cart
For sure things have changed, on the outside at least
But that same heart soared to see that you’re still a beast
Knowledge of your condition , which you so kindly shared
Has given me hope, that which imagination hadn’t dared
To realize, though painful and oh so frustratingly slow
You can crawl beneath the razor wire and go.
Inexpressible rage at this eternal nearly stage
Balancing an elephant on a razor blade
Intangible progress stinks, nothing to do but think
Through Physio reinforced will , you can make those new links
Plough on through relapses, keep re-routing synapses
Forging new paths, machete in hand
Like ants linked across a chasm, to the promised land
So keep this in mind, when the psyche is unkind
Though things may never be quite the same
You have the power within to Heath Robinson your brain
Sometimes will be low, the future’s extent… a bungalow
Yet from what I saw, you haven’t lost your mojo.
So you bloody keep going , even when its not showing
Perhaps our faith in you can your keep your faith growing
And when results don’t match expectation, just remember this equation,
Success = Will + Plain Perspiration.

Someone can try to piss on my chips but frankly I don’t care I think its quite brilliant. As you can imagine this whole experience has given me too much time to think (always dangerous) about what is important in life. After all this time I’ve come to realise it is something that has been bandied about for ages – Friends and friendship. If I look at the help I have been given by friends I have consistently been amazed at what people have been prepared to give up. Above all others was the relationship I had with my former girlfriend( I’m not getting into the reasons why it’s no more, just leave it down to that great Facebook Mantra, it’s complicated).The reason why I considered her to be so important was because despite me being so unresponsive and to all intents and purposes, dead, she basically put her life on hold so she could be at my bedside for three weekswhen it was not known if I’d be much more than a vegetable if indeed I woke up at all. I can’t imagine what that must have been like. When, I look back on a lot of the genuinely positive experiences of the last two years, they’ve been because of friends and the sacrifices they’ve made for me . When I look back on the staff who I’ve got on with the most it is unashamedly the men who have made me laugh and somewhat ashamedly, the prettier girls and those who have been most caring , That probably sounds dreadful but I’m just being honest! Well I’m glad to have got all of that off my chest, I will continue with the scant detail of my future plans.

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.

5 Feb 2008

Post Number 9: Self-Loathing

After feeling tetchy yesterday, I feel as though I may have hit a new low today. God I hate this place and god I loathe and despise myself .I’ll tell you why… It’s the whole dishonesty of being in hospital where you almost have to be nice to people who: you can’t stand/irritate you/ are painfully stupid because you are so utterly reliant on them. At least in the world of ability you at least felt you could rely on yourself and pick and choose who you need help from. In hospital even an able bodied imbecile is in a much better position than me it seems. Morning rant over – may be back later…

4 Feb 2008

Post number 8: Being Patronised by the staff

I feel utterly fed up and frustrated today for two reasons,neither of which because it’s Monday, although that would normally be enough. I woke up this morning feeling dreadful (as usual). There seems to be nothing that medical science can do about this, seriously, absolute zip, that or they’re too incompetent to find the right medication (I suspect it’s the latter), my fury was ignited last night when having typed a suitably acerbic post on my radio-surgery and the evil Royal London Hospital I came back from dinner and the computer had managed to switch itself off. Not panicking I turned the computer back on, when I opened word to my horror the rather personal and painful and painstakingly typed post had vanished. I’ve lost work before but this felt much worse! So that was the first thing, the second was that at 3:30 today the room with the computer in it was ‘booked’ till 4:30Pm so that the therapists and some of the management could have a jolly old chinwag! Explain to me the logic that puts a meeting room in a building full of empty rooms in the only room with a network point (therefore only room that can have a computer. This culminated in me telling Sonja, remember the ruthlessly ambitious Kiwi boss ‘stop talking to me so patronisingly, f*** off’ God I am tetchy today. That’s all the time and energy I’ve got today I’m afraid, happy Mondays!…

1 Feb 2008

Post number 7: Moving to the Royal Hospital for Neurodisability (RHN)

God, this has taken me a week, I hope the read is worth the write! I finally left the Frank Cooksey in early April 2007 after they gave me a provisional discharge date of July 2006. It just goes to show how little is known about how long the process of recovery from an almost fatal brain injury can take, boy did they get that wrong, or much more depressingly – I am recovering a darn sight slower than I should be. Here I am, over two years down the line and I feel no closer to getting home and the prospect of my life ever returning to normal again is basically gone. That original discharge date made me cry back then. The prospect of spending so long in hospital, of having no freedom or independence for so long was almost too much to bear. By the end of 2006 I was desperate for a change. It’s strange but with brain injury you use your physical improvements (i.e. how far you can walk with a certain amount of support, how long you can stand etc.) As a way of judging your progress but this goes out of the window when you desperately want a change. It was (I think) at this point when Caroline from Southwark young persons disability fund (YPD) got involved (in healthcare language young seems to mean anyone less than 60, seriously, which explains why I’ve had so few patients to relate to in the last 2 years, that, and how many 30 year olds have strokes). YPD are the government body who have basically been funding me since the moment I was admitted to hospital so despite the fact that I feel very messed around by them of late, I am also very grateful to them. I certainly feel that I wouldn’t be here (by that I mean alive) if it wasn’t for them. I was desperately lobbying them to fund me to go to the Royal Hospital for Neuro-disability in Putney (RHN) to join one of the other FC patients who had already gone there, (an hilarious forty-something teacher called Zo who I used to have a right giggle with) as I was convinced I was going backwards in the FC despite the staff and the fact I now had my own room. For the first time since my stroke I felt I had my own space. This had become particularly important to me since I had noticed one or two items go walkies from my meagre possessions (notwithstanding the DVD player at Charing Cross). It wasn’t so much that I had good possessions it was more to do with me personally, I looked like the epitome of a white middle-class semi wealthy person despite not actually having a pot to piss in! Sadly, I think I was the victim of an increasingly disturbing trend. That of “Its OK to take things off people you perceive to have more money than you”. What I call a ‘Kleptocracy’. Nicking stuff off people can never be justified. End of. Even that secretary at Goldman Sachs who nicked more than a million quid off her bound to be an unpleasant man boss was bang out of order. It was in this frame of mind that I began asking Andrew (the ward manager and now my keyworker) every five minutes about whether my funding for Putney had come through. I remember one time he rather sagely said to me.”Putney’s not this Panacea that will instantly solve all your problems” It was round about this time that I began to accept how serious my situation was. I cried and cried when I realised I couldn’t just phone someone up and say, “I’m fed up now ,please come and pick me up”. Having my own room made such a difference. For once I felt like I had my own space and privacy. An immeasurable positive particularly as the guy who had ended up next to me on the main ward liked to play loud Reggae music all morning and have loud conversations with his mother on his mobile about how good at his job, as a janitor at some local school, he was. In early April Andrew told me my funding had been approved. This at the time was great news to me because I felt I was progressing. That said Putney was to be a game of two halves. The first half was to be in Drapers ward. Honestly, I hated Drapers. It didn’t start well when we had the hottest April for years. Because of health and safety legislation and because of the fact that the RHN are so utterly terrified of being sued (thank you US ambulance chasing culture) they couldn’t supply me with a loan wheelchair till I’d been properly assessed by the wheelchair department. The earliest appointment was three weeks so for three sweltering weeks I was confined to my bed. This was the worst torture I’d ever had to endure. One of the main reasons I’d come to the RHN was because it had nice grounds and a reputedly excellent wheelchair department. I could see through the tiny windows of my obviously un-air-conditioned room that it was glorious outside. If this had been Kings they would have used any old chair they had found lying around. But not at the RHN, it seemed that they had taken being jobsworths and bureaucrats to the next level. So having established that things had started appallingly, what happened next? My mobile phone and brand new electric razor vanished, I mean, how low could people stoop? As my favourite character from channel 4s ‘peep show’ Superhands once said “people, like Coldplay, and voted for the Nazis, people, can’t be trusted” It would be easy to imagine that someone with a brain injury might just misplace them. Two problems here. Firstly, my room was tiny and was easy to search, and secondly I had no way of getting the relevant items out of the room. Simple conclusion. They were nicked. After this I didn’t feel safe in Drapers. It was difficult to avoid suspecting everyone who might have been capable of doing such a low thing. Things did not improve, despite the heartwarming success of my 30th birthday party at the end of April. I think it was Drapers that taught me how important the staff are to your well-being. After my good experience of most of the Staff at the Frank Cooksey, my experience of Drapers staff (clinical, therapy and Nursing was diametrically opposite. Above all else I felt the Nursing staff couldn’t care less about the patients, they treated us in much the same way as porters treat students at Oxford Colleges. Mild Irritations that get in the way of the smooth running of the institution rather than the people that the institution exists for. This just wasn’t right but there seemed to be little or nothing I could do. Make a complaint against someone specifically and the nursing staff would just close ranks and not help you. It was at this point I found that being capable of speech was a disadvantage! I discovered that the staff didn’t want to help me for two reasons, firstly because I could talk (unlike most of the other patients) and therefore I could complain and secondly because I was heavy, 6’3” and approx 15st at last count and therefore a risk to their backs. This was brought home to me when I was standing holding a horizontal bar and slightly overbalanced. One of the male nurses was standing next to me (by no means a small man) so I used him for support to stop myself falling on the dreaded floor. To my horror the bloke looked at me like I’d just shot at him, he then pushed me. What a bastard. Not only did I now think they were a bunch of thieves I now thought they were out to hurt, rather than help me. I was petrified. To add insult to injury. The next morning one of the more scary looking male nurses stood over me while I was eating breakfast and repeatedly told me to ‘hurry up’. It was all I could do not to tell him to f*** off I’m going as fast as I can! This was one of the things I hated about Drapers with a passion. The fact that the pace of life was entirely dictated by the Nursing staff. As a patient you had no say. I didn’t just have issues with the nursing staff. There were also serious issues with the therapy staff. God – this sounds like one big long rant. Well frankly it is and I feel it needs to be said. Firstly there was my occupational therapist, a whale of a woman called Lorna with bad breath and brown teeth. Now aside from that oh so appealingly start she also did that thing that all OTs seem to do. They turn up for sessions completely unprepared and say ‘what do you want to do today’. Even if I was 100% I would probably show them the door but given my parlous state the only things I could think of to do involved me being able to walk, or the use of both hands properly. At least if you enjoy a persons company then doing menial tasks slowly and badly is bearable (just). With Lorna they were impossible. Seeing as I’m on a roll saying what I think about my Drapers therapists, I might as well turn the topic to Viji, my diminutive physio. She basically started me from scratch and it felt as though all the previous physio I had painstakingly done at the FC had been disregarded. There I was basically walking (pretty badly with a Zimmer frame) most days. Viji basically forbade me to practice walking in favour of some tortuous (and dull) exercises. I and many others therefore believe I missed a vital opportunity to improve the one thing, which was psychologically most important to me. There were a few chinks of light on Drapers. There was Brad, a Ghanaian healthcare assistant who was always good company, often we would have each other in fits of laughter by speaking made up Italian to each other. Invented by Brad his particular brand of made up Italian was any English word with-iano added to the end. I know what you’re thinking… It doesn’t take much to amuse me. Weeeell, maybe it doesn’t… Maybe it was the delivery of it, between his comedy bouts of African chanting and dancing and his tall tales of success with the ladies. I miss Brad, he genuinely used to brighten my day. There were also Marvin, Leroy and Ali, all physio assistants stationed in Drapers Gym Marv and Leroy were the muscle. They were hilarious and my only reason to look forward to physio. Chatting, laughing and spending time with these guys made doing my desperately dull exercises almost bearable. I still couldn’t really bring myself to do my 2 hours (plus) bed exercises a day, I was too tired and they were too boring. Ali was a lovely little Irish girl who used to make time to come and see me and make sure I wasn’t feeling too depressed and chat to me in an effort to improve my spirits which were at the time pretty close to rock bottom. The only other good thing about drapers was that the wheelchair department finally found me a half decent powered Loan wheelchair that actually fitted me! This gave me a little bit of independence back so when I was really fed up of the environs of the ward day room, my room or my bed I used to take off and maraud around the hospitals many long corridors and sit alone in quiet contemplation in the corner of one of the hospitals numerous Jane Austin-esque rooms. Those of you who have seen the RHN will know what I mean. I was also by this stage quite keen to avoid a couple of the other Drapers patients. You would have thought that solidarity with the other brain injured would draw patients together but as I found out brain Injury is so diverse that it’s often difficult (nigh, impossible) to get people together in a group because some can’t speak, understand, see, hear, stay continent etc… This makes me realise how lucky I actually am… back to slagging off patients then! There was this one guy called Ron who I christened ’1930s man’, mainly because he would burst into ’land of hope and glory’ if there was a program on the ward TV about the war. He was also a miserable old git, but the habit that used to annoy me the most was a toss up between his constant muttering under his breath about how everyone else was the ‘enemy’ or how he constantly used to shout ‘help, nurse, help’ and when one of the staff rushed to his aid he would inadvertently have forgotten why he had needed help in the first place. Now, he probably couldn’t help any of this so it neatly illustrates how a brain injury can rob you of all human decency, reason or logic. It was probably unfair of me to judge Ron like I did but hey Ho, I was mad at him for devaluing the word ‘help’ for all of us patients. Equally, the world has been judging people based on what they say or do forever. I guess another part of the reason I chose to avoid Ron was because I could not imagine him being any nicer even before he had his stroke same with Robert at the FC. Finally, my last gripe about Drapers was their utter reliance on agency staff, (to this day I have an ever so slightly irrational dislike of agency staff. This is why – They are the lowest quality staff that the hospital decides aren’t good enough to be taken on by the hospital as staff nurses, they make little or no effort to get to know patients, they seem to have far less common sense and are unwilling (or incapable) of applying themselves to anything that requires any form of lateral thinking, or they won’t lift a finger if it is anywhere near the boundaries of what their agency contract might say. They also tend to work the most god-awful shifts, nights or weekends, which tend to make these the loneliest times in hospital if you can’t sleep or have no visitors.

Now, I said before that the RHN was to be a game of two halves, well the2nd half was thankfully not to be like my experience of Drapers. Now, at this point you may be wondering what had become of my friend Zo from the FC. Well she had gone straight to a place at Putney that she loved (in my rehab language ‘hated less’) called the Transitional living unit (TLU) where I have been since April 2007.Zo was discharged home in April2007… I am still annoyed about the timing of this because if I’d had someone at a similar stage of recovery to have a laugh and joke with the last 9months would have been considerably easier. My experience of the TLU is best summed up thus ‘definitely the least worse place I have been stuck at thus far’. Praise indeed! The TLU is a standalone modern building about 5 minutes by wheelchair down the hill from the main building. It has the feel of nice student accommodation and for extra edginess is on the edge of a rather gritty south London estate. It’s got all the right accoutrements, Kids hanging around on street corners, crying babies, screaming women, barking dogs, those groups of kids on those bloody annoying mini motorbikes. It’s like being back in Brixton again! (To those who don’t know, where I used to live). The thing that makes the TLU virtually unique in terms of atmosphere and unfortunately expense to my Healthcare Trust is the staff. Instead of having a traditional nursing staff they have a pool of about 11 rehabilitation assistants (RAs)(for a maximum of 9 residents) who are mostly psychology grads aged early 20s to early 30s who basically carry out the work a nursing staff would normally do, the emphasis being on trying to support you with day-to-day tasks that you’d need to do to survive in the community with minimal assistance. 2 of them are on (minimum) per shift and they have always provided intelligent people to talk too. There is also a clinical nurse whose job it is to line manage the RAs and dispense medication to the inmates. There are also a therapy staff (physiotherapist, OT, Speech therapist the and a senior management staff – While I’ve been here the unit has been lorded over (and I do mean lorded by a Kiwi Lady, a consultant nueropsychologist called Sonja, a woman so ruthlessly ambitious she seems desperate to show the world that she’s the boss she frightened away (with the threat of suing her) a counsellor that my sister had paid for. Sonja chose to get rid of her because she felt her toes were being trodden on despite my pleas to the contrary because I enjoyed talking to Louise. With my business hat on, I’ve no idea how this place can be financially viable. Considering that in the nine months I have been here the most number of patients has been 5, it is small wonder that a lot of healthcare trusts shy away from funding patients to come to places like this and I had better get back in my box about how tired I am of being here and talk up just how fortunate I am. I could be in a much worse place, but it’s so difficult to see it like that when the bottom has fallen out of your world. One thing that still really frustrates me is the fast turnover of staff that seems so symptomatic of the medical profession. I would say that 70-80% of the healthcare staff who have dealt with me over the last 2 years have moved on to other healthcare jobs in different locations.This is clearly the way that healthcare professionals move up the food chain.For example at theTLU 7 staff have moved.Unfortunately, they all happen to be staff members who Really improved my shoddy life.
Few who met him would ever forget him.One of the best blokes I have ever met, I’m crying writing this but I miss Derek most of all (the comedy glaswegian Clinical Nurse)… Now plying his trade somewhere in Sweden (his attempts at linguaphone Swedish still brings a smile to my face) and I still maintain to this day that his main reason for moving to Sweden was because as a country it’s on a similar latitude to Scotland. Then there was Niall(an RA) an hilarious Irishman whose encyclopaedic knowledge of Trivia was as immense as it was because he used to make stuff up.The there was my favourite, an Aussie called Natasha. My favourite because not only was she lovely but I remember one particularly cold morning that without asking at about 4AM she put an extra blanket on my bed. It’s acts of extreme kindness like this that have really stuck in my mind. There was also lovely lucy, so called because myself and another patient called Mike thought it best summed her up. Mike was a top lad, here because of a nasty car accident, he was even younger than me (poor guy) but he had a great sense of humour. He coined the rather brilliant phrase that I’ve often used when someone has tried to give me a hard time… It simply goes “leave me alone, I’ve got a brain Injury”,add expletive for effect,the man was a legend! Although I was obviously pleased for him, in the same way I was for Zo that their progress was enough for them to go home, I was gutted to see them go home.There was also the unforgettable Chrissie whose impression of Vicky Pollard (the pink tracksuited chav from Little Britain was GENIUS! Finally,of the RAs,that have left, there was beautiful and sweet Swedish Hannah, no prizes for guessing why I was sorry to see her go. There was also Patrick, Sonja’s assistant Psychologist. I enjoyed our chats and the work we did on my mood and fatigue. He did his best to try and improve both by trying every trick in the book and taking me through an arduous round of cognitive behavioral therapy. One day we came up with a great concept. I was feeling particularly worthless at the time so Patrick told me to think of the most worthless and worthwhile people I could think of. For worthless I came up with a half-wit I had once had the misfortune of meeting in some god-forsaken club somewhere, a guy called Steve Prince. For the most worthwhile, I went for a guy called Charlie Mayfield, now chairman of John Lewis (in his early 40s).With Steve at one end and Charlie at the other, Patrick told me to rate how worthless I was feeling. The Prince-Mayfield scale was born. Has a nice official sounding ring to it doesn’t it? A bit harsh on poor Steve though. But in no uncertain terms does it remind me of how incredibly supportive my former employer, John Lewis have been, I don’t thinkI could have hoped to have worked for a more supportive company. Not only do people I used to work with frequently visit me but my wonderful former boss (Helen Keppel-Compton) comes to see me regularly. In fact on one day in the FC, Charlie Mayfield (of Prince Mayfield scale fame) came to visit with Jill Little (my old bosses boss). Firstly,let me just say that was one intimidating visit, secondly, how unbelievably nice of them . Effectively, the two most important people at my previous employer had given up their incredibly valuable time to come and see me. I couldn’t see that happening at any other company. In the same breath lets not forget Jackie Kennards amazing effort at raising several thousand pounds via a sale of samples to partners with the proceeds donated to the Charing Cross stroke unit and the FC. Jackie(who Used to be my office motherand always used to look out for mat work has now sadly retired from JLP but her and her husband Selwyn have been great friends to me and my family over the last couple of years . Basically as you can no doubt tell, the last two years have been a little hard but the help I have received has at times been overwhelming. But there is little doubt in my mind that the people it has been hardest for are my close friends and family, who have been an amazing support. I have no idea how people who suffer this kind of misfortune cope if they don’t have the same help that I have had, First and foremost my incredible parents who have tirelessly visited me since day one. Not only have they had to travel miles ( because they live more than an hour by car away . They have also had to deal with effectively being homeless and living with no possessions in a rented house, this is because their house that they have lived in for the last 25 years burnt to the ground in October 2006. If one good thing has come out of my stroke is the fact that when the house was struck by that fateful lightning bolt they were in Putney visiting me!oh, the Irony. I suppose there are a couple of bits of news worth sharing. The good news is that they were at least insured fully –ish for the building, but according to my mother the contents are woefully underinsured. Quite how you’re supposed to put a price on 25 years of possessions is beyond me. The bad news was that because of my illness they had basically emptied my flat of all my possessions and taken them home . Everything I own has been destroyed. To add insult to injury it is apparently uninsured. The good news is therefore that my parents weren’t in the house and thankfully they were never at risk. Possessions can be replaced, people can’t. Friends have at times been even more important than family. For example my long suffering now sadly ex girlfriend Natasha who I have put through hell. Not only did she basically put her life on hold so she could be at my bedside when I was in real dire straits in Charing Cross but she has given up so much to come and see me in various parts of south London (she has always lived 1hour+ away). I owe so much to her. I am also incredibly grateful to my good mate Tony Reid for organising so much and letting people far and wide know that I am in hospital. Also to those who helped set up the Dom Pardey Trust which is helping me through my recovery. People that instantly Spring to mind are Helen Vaugn-Jones,Tristan Clark and Matt Hancock. I also strongly wish to thank everyone who has donated to the trust especially those who have run events,Mike Uberoi and others at Walton Heath Golf Club, those planning events, Simon Winstanley, Shaun Rowland,Jonathan Edwards,Hannah and Balt for organising a special Becomeone (a legendary party I used to go to) at Inigo in Clapham on March 1st to raise money for the trust . Without this help I would never have been able to get my amazing wheelchair which is thousands of times better than my old one and has opened up much more of the world to me. I live for my visitors , friends and family, every decision I now make takes into account the effect it may have on the most important thing to me, friends and family and my network of support. When I summon the energy for my next post,I will try and outline the sketchy plans for the future and believe me they are sketchy. Right I’m exhausted now and if you’ve read this far you probably are to. Thankyou and goodnight!

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