Tuesday, February 22, 2005

Hi, Jos' Mum here again. I hadn't realised that there's only a finite space per blog entry. Also, even though I clicked on the publish box, it didn't arrive on the blog site. Dagan was baffled too, and he's gonna try and get it sorted today,so I'll just blunder on. (One of our plans for the future would have been Joanne teaching me all about using the computer!)

Where was I - hallucinations, suffice it to say, she got over that period. She actually began to feel better, though she wasn't happy with haemo-dialysis. It's far more aggressive than PD, and consequently they couldn't give her too much too soon, so she felt overloaded and weary most of the time. Thank goodness, it was only to be short term till her peritonium healed and recovered enough for the operation to replace the PD tubes. (Probably a few months). So we were all set for the three trips a week to Addenbrookes, she'd got the twilight(early evening) slots, which was a bit of a pain in the ass, but looking on the bright side,that meant that instead of having to be in bed by 10oc to start PD, she could go out on the town or sit up all night if she felt like it.
On 11th January I heard that I had got Early Voluntary Retirement, probably finishing work at the end of February. (We'd been waiting for this news since I applied last October-time).
We were both so excited about how this was gonna change our lives - no more catching the bus to hospital, I'd be her personal chaufferse all the time - on good days we could just up and head for the coast, or the forest, for picnics - we'd have our main meal at lunch-time - loadsa stuff to plan for.
She'd agreed not to apply for anymore jobs until after her transplant op.
They'd suggested the possibility of maybe having a feeding tube again, because of the gastroparesis flareups, but you know how she loved her food, so she convinced them that she'd go all out to control it with diet. We'd got lists up in the kitchen, and diet sheets filled with perfectly acceptible and scrummy things for us to eat and drink.
Her charcots' ankle had pretty much started to crumble again, and she was so mad with them for not doing the amputation last July, when she was psyched up for it, because by now she probably would have been mobile with a prosthetic, and wouldn't have got the pseudo gout in her knee . However she agreed not to worry about that for a couple of months because we'd got way too much good stuff to think about.
We were really going to to town on the garden this year - I'd do all the heavy stuff, so's she could concentrate on her tomatoes, strawberries, runner beans and herbs, which she so enjoyed over the last two years, and branch out to include other good things to eat. She loved the flowers and shrubs too, but that was my domain.
She'd signed up for an Open University course again. (She'd had to cancel the one she started last year as she got behind with the course due to so much time in hospital - main reason for getting her lap-top, later). So she was prepared this time, and lowered her sights, to an introduction to the Social Sciences. Just to keep her mind active, ready for someday returning to work.
She'd got her name on the local Housing List (ok, they can take years we knew) but she was determined to one day be independant again.
I tell you all this because I want you to know that NO WAY did we ever consider what actually was to happen.

I brought her home, and on the 16th January we had a lovely family sunday lunch when Dagan and Angela came with Rolo, and our friend Ali joined us - we'd been looking after Jet (her black lab) for the weekend. She was her old self, screaming with laughter at the antics of the three dogs, with many funny reminiscences of her wild time on drugs, and joking about whether she could actually stay out of hospital a whole week and be here for next sunday lunch. Sadly she didn't make it to the next weekend, in fact when I came home monday lunchtime she was very poorly - just very week and dizzy. She said that she could have sorted herself out if only she could do PD. Anyway I took her in to her dialysis slot, and I knew that they would keep her in.
She rallied round again, bless her, albeit with a couple of shots of blood during dialysese(that's meant to be the plural of dialysis) which we weren't happy about because the more she has the more difficult it would be to get a good match for her transplant op. By the way she was back on good old C5 - home from home. They'd sorted her out and there was a good chance that they might have let her come home, normally she would have been nagging them to let her out, but after the peritonitis scare she was treading a little more cautiously, and besides she wasn't feeling that great and she'd got a bit of a cough. This turned into a nasty infection which affected her chest, nose, eyes and ears, and she told me not to come in monday and tuesday, because she didn't want me to catch it . So we had our usual chats on the phone, and I wasn't too worried especially as by wednesday (my day off) she was feeling a whole lot better. I took her in her favourite roast chicken pieces (still hot) which she ate with relish, but saving some bits for Ash, waiting patiently, as always, in the car. Normally, I'd have wheeled her down to spend some time with him (in the garden on warm days, but mostly in the winter we just sat in the car), but she was waiting to be picked up for dialysis, so had to stay in her bed space. The usual topic - devising fun plans for my retirement - she had carefully positioned her fan to blow the bugs down the ward, not at me. Such a thoughtfully wicked girl!
Later, I got the phonecall from the ward letting me know that Joanne had taken a turn for the worse and I should go in.
Hi ;)
wow... what unbalanced comments!
what do U consider about it?
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