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Saturday, February 19, 2005

Hi, Jos' mum here as promised.
Firstly, let me briefly run through what happened from the time of her last post. She was admitted to hospital on the 15th December - yes that was the day she was taking part in the medical exams, unfortunately throwing up all over the first candidate put paid to that, and the job interview later. Of course she was upset but realised that it was possibly the stress/excitement of the interview which brought on the gastroparesis flareup. Anyway she needed IV meds to settle her down. No biggee really - she was just desparate to get back to Christmas preparations.
So, I brought her home on the 22nd, back in Christmas eve, home again on the 27th, back in again New Years Day and her operation to remove the PD plumbing and insert the Haemo plumbing in her neck/chest was on the 3rd January. Nobody should have to endure that much pain, but through it all we thought that this was just another hurdle to get past. Anyway let her tell you about that........


11th January
Something is bugging me about this date - like it's someones' birthday, or other special occasion - or more likely a hospital appointment. Still, it's 5.29pm so it's too late to worry. Besides, I have an excuse.

I have been away and I ought to warn you all that the past week or so I have been blabbering like an idiot. After all the pain and painkillers I have endured, I have never been this nuts - I am hallucinating, and not in a good way. I am on C9 and I think they all hate me - I am that patient, late at night, who shouts and screams and wakes everyone else up. I am that strange patient who keeps asking where I am, and insisting the nurses check my room all hours of the night. But mostly I am just the patient who disagrees with everything they say. I mean, the doctors have told me that it's all normal, and assured me there is nothing there, nothing - no matter how hideous - can hurt me because it's all in my mind. Now, I had a similar discussion with Vanessa, my CBH therapist, because I figure that as soon as I have a thought, be it "Oh God I look fat" or "Jesus, there's a massive bloodstained rottweiler in my bedroom, and it's growling at me," then that "thought" is real, it's out there - I can see it, and no matter how much you say it's not real, ("I'm not fat"/"Hello big boy") there is another part of your head saying "Yeah but it's right THERE in front of you." So I was really offended by the nurse who kept coming in and shouting at me that it was in my head, there was no-one there and it was about time I accepted it, as she's told me often enough, and go to sleep! Perhaps I ought to start at the beginning, before I carry on ranting.

What did I tell you? I don't remember when I got on, if I got on, before Christmas. So quick round up, - was admitted the week or so before Christmas with GP - also noticed my tenkopft (sp) exit site was a bit bloody - showed it to the CAPD nurse who said it looked ok for now - I had no stomach ache and no temp so she said it was ok to go home. The day I left I had a tummy ache, nothing too severe, and I so wanted to get home for Christmas. I left hospital on the wednesday, in hindsight I should have stayed in and started the Peritonitis protocol. Thursday I was in agony and PD was agony too, but my bags were clear - I just wanted to get through one Christmas day without ruining it for everyone. However, I did my daytime exchange at around 5.30 and it was thick and gunky and the pain was incredible. (On top of that, I'd forgotten to heat a bag up.) So after speaking to dear Angela, the poor nurse on call, she told me to drain in, and then meet her in the Medical Admission Unit. (I didn't tell her about my mistake with the cold bag.) At least I wasn't the first to call and she was already at Addenbrookes. Dr Sanjay (still don't know his surname) was on all over the weekend too so it was nice to see friendly faces. C5 had been closed due to a stomach bug, poor babies, I must have just missed it , thank goodness, so I spent Christmas in MAU. It was very nice and festive, including a full roast turkey lunch, paper hats and presents for every one. I had a second Christmas at home a couple of days later with Mum, Dagan and Angela, and all the animals of course, but then I just seemed to get worse and was back in MAU for the New Year.
I was given Pethadine for the pain - and then the specialist pain doctors team came to see me and made a few suggestions including a morphine drip which I controlled myself. It didn't really work much at first, as I felt too guilty/embarassed to be such a baby, and the last thing I needed was to hear some nurse say "Blimey Jo, no-one's ever needed this much pain relief before, what a wuss!" (I know they wouldn't SAY that but I bet there are a few at least who would feel it.) Anyway, I saw the pain team and Dr Sanjay again, both made me cry by poking me - like they do - these bloody doctors, but they told me to press it whenever I needed it, and that I'd hardly had any the day before, and inadequate pain control is almost worse than none, and besides I would fall asleep long before I was able to overdose.
So I just pressed and pressed - it was bearable, but I was also wary of getting side effects - especially constipation, which actually wasn't a problem. That night I noticed problems with my vision. Well I guess it had been a bit weird before, but I was too ill to care. I found myself at home in normal situations, talking to family members. I had been in K2 (only one with a bed) and they were nice enough, but knew nothing about diabetes (particularly treating hypos), and nothing at all about kidney failure, - and I must have said the term "charcots' joint" five or six times before I gave up and said never mind. They had no clue about anything - not even pain, as they would always wait hours to speak to a doctor before they gave me any, and were never really happy about giving me it anyway. I had the op and was expecting some relief when I came round - huge disappointment! I was in so much pain I don't really remember much, except the doctors and surgeons were all lovely. Luckily, I think I moved up to C9 the day after my op, and that's when I really started seeing things. (Now, I've been on C9 before and I am pretty sure I had a perfectly fine admission and all the nurses were lovely).

My seeing things became full blown hallucinations and I have to admit that the last couple of days are a mystery to me, I have no idea what happened and what didn't, though I am sure that the things that didn't really happen are more entertaining to read about. Here are some for instances -
Watched strands of wire in bright green and orange colours "grow" all over the windows,floors furniture and doors - grow thorns and stab my feet (leaving no marks, of course, only pain).
Spider-like bugs grow from same wire and follow me to the bathroom.
Gangs of werewolf/vampire teenagers - in Michael Jackson Thrilleresque clothes, outside my window, floating, smoking, biting and snogging eachother.
The whole wall of Addenbrookes changing into something hideous, like an evil castle with demons and monsters carved in the rock, and huge flying monsters being ridden by the aforementioned werewolf boys, for as far as the eye could see.
Said monsters flying up to my window, looking straight at me and bellowing.
At this point I gave up any planned bravery I had and got a nurse to come and shut my windows and curtains. Luckily I had spoken to her earlier, when she took me for my ultrasound scan on my stomach, so she was cool.

This afternoon discovered the weird wire plant had infected my water jug - frequent requests for a fresh one follow. Have taken to covering all my drinks with a tissue, and got Mum to bring me a bottle of water.
Spent several hours sitting with ugly, mean-looking rottweiler - who also looks like an extra from LOTR, only to discover she is a complete sweetie, and sometimes she is a very dark -skinned African woman who speaks when I speak to her. She has three puppies with her, but none of them are hers. She hasn't been able to have puppies since she was four. She got in a fight with an 18stone rottweiler and afterwards her owners took her to a hospital (did she mean vet?) and the doc (vet) took her home but she didn't make it. She still visits him but doesn't think he knows it. She is very poorly looking and sounding, and says she doesn't like the cold this time of year. She asked why I was here and what was wrong with me. (Mum says that the fact she gets cold means she isn't a ghost as it's not cold in heaven). She asked me if I was alone and I said yes apart from my Mum. She wasn't there when Mum came so I couldn't introduce her.
There were lots of cats too - a full-grown one sitting on my wheelchair with the rottie. She had two kittens on her head, playing and cuddling, and then a little black one on the chair who slept the whole time, and a black and white one who came and sat next to me. I touched her I'm sure I felt her - I felt the vibrations of her purring anyway. (Rather like the bellowing of the monster duck thing outside). There was also one lying by the door, and one under the sink on a box who had two kittens, and one big one who seemed shy and the rottie called him Simon, I think.
They came and went all the time. At one point the cleaner came in and threw the hoover lead over the cat under the sink, which woke up startled, got up and ran like hell, causing the lead to clatter on the floor, but she did not notice.
They were all gone when I got back from an exray. While chatting to the nurse I discovered there had been no school trip on the ward. Nevermind that I had heard the kids ask if they could play with the doggie - the nurses were dressed up and everything.
I saw a group of men DRIVE up to the roof of Addenbrookes and wind-glide off it into the patients carpark below which is emptyish on a sunday.
The pond thing has built a web from my TV to the wall opposite and I can see a fucking big spider on it's way, so I'm pathetically repeating "I don't believe you, you're not real", but I'm close to a major freak. However there are some nice cuddley teddies up there that might protect me.
This evening I saw some people standing, staring through the ajoining window to the nextdoor room. I smiled and they smiled back and held up some dogs to "put a smile back on your face". Probably because no-one here has ever seen me smile yet. Anyway I was talking to Mum and it was her who said "Are they real?" which hadn't occured to me, but then I noticed it was a whole Christmas parade in there - well you did ask!

So I've had a busy day really and now I've shut the windows and curtains to keep the monsters out - not like they can't just float in...., so now it's time for more drugs and sleep.
By the way, the pain team did stop the morphine when they heard about my hallucinations, and apologised saying that they wouldn't have recommended it if they had realised I was changing from CAPD to haemo dialysis at the time, as I won't be at optimum efficiency for a while, so the byproducts of the morphine and pethedine will hang around in my body. Five days is the current estimate though it could be shorter or longer. I can't believe that anyone takes those sorts of drugs for FUN!


Well, that's the last of Joannes' notes - I'm sure she would have flowered it up and made it funnier if she'd had a chance to post it herself, but I'm afraid you got it in the raw. The hallucinations episode was not all bad, in fact she was fascinated by it and we talked endlessly about all that she experienced, not only during visits but also in our usual phone conversations in the morning and at lunchtimes. I seem to have run out of space-will continue,next post.
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