Zone Doubt, a.k.a. 'Surreal Я Us'...
Joules, trusted by... dozens... to make a drama out of your crisis...
:: JAT :: WaveWrights :: Publications :: Joules... on writing [on hiatus] ::
I live to write. It's not wise to get in my way.
August 2011: the earlier posts in this blog are a mess, the result of me changing the format some time ago. I'm working to edit the entire blog from the beginning, but with over 4K posts and sodall time for such luxuries it's going to take a while... [02/09/16 - Now reached 09/10/2004]
If you come across any words you don't recognise in this blog, take a look at the Taylorspeke Glossary in the left-hand infopane, you'll usually find a definition there.
Thursday, March 13, 2014
Sorry for the dearth of posts but on top of everything else, last Friday I was asked to write a thing (that might become a thing, but as you know I don't talk about the thing until it's a confirmed thing just in case I jinx it...) for today, but since I wasn't going to be here much this week I had to do it on Friday/Sat/Sun, which meant working flat out while trying to keep everything else under control as well. Oh joy. Managed it though...
So - Kai's birthday. It was quiet and laid back: we had steak for dinner and then watched Gravity, which we gave him as a present. Post-film was fun as he analysed everything that was physically wrong with it (and there were lots!)
Monday's hospital appt was loooong - washed platelets then two units of blood as normal. I nipped out and did a little shopping in Broadmead while he was sleeping through the transfusion. But the day unit is now in its lovely new building, and is airy and spacious and all windows, actually very pleasant indeed. It'll make spending time there a lot nicer.
Tuesday... The run up to London was great: I'd reserved seats in a 'quiet' carriage and there were hardly any other people (thus less risk of infection), so it was lovely and peaceful. Unfortunately, as our taxi driver told us, there'd been some kind of 'incident' on one of the main roads (which had been closed) in the centre, and the traffic was horrendous. Took us over half an hour to get from Paddington to Denmark Hill (*wince* and cost £33. But we should get that back. I hope) - we stayed in one of the suites here (and no, I shall never live it down): it's literally around the corner from King's College Hospital and accommodation is free for patients, if they have room, which they did (a very nice suite, double bedroom for Kai, separate bathroom and a spacious kitchen/lounge where I set up the camp bed provided and proceeded to have one of the most uncomfortable nights of my life - oh my back!). Unfortunately it was on the third floor, so Kai had to take the stairs very slowly, but he only had to go up them twice so he managed.
We booked in, dumped the bags, then headed off to the London Eye. Grandparents gave us some cash so Kai could do something fun while we were there and we both thought that would be fun.
And it was!. Only had to queue for tickets for about five minutes, then another two to get on it, there were only about 10 people ushered into each capsule - not at all crowded, enough that Kai could keep his distance. Then a wonderful leisurely thirty minutes turning a slow circle in the sky... Wonderful. We both felt great afterwards.
And on to Wednesday and the actual appointment...
It went well. We saw both specialists - Austin and Judith Marsh. They are generally pleased that so far Kai has had few problems with the meds and side-effects, and pushed for a bone marrow transplant as the best option at this stage, stressing how much success they have with them. But they admitted they didn't have a good match (I think they said only a 70% match, whereas a good one is 90 - 100%) and after reading that terrifying book about the subject that Polly gave us, both of us have to consider transplant as a last resort (unless a good match is found). There's still a possibility that the original ATG (which came from horses) could kick in, especially as his WBC and neutrophils have increased since he had the chemo (very slowly and only a little but that's still positive, neutrophils up from .05 to .24, and we didn't know it until now but it is those two elements that show progress before the RBC and platelets). In some people it's kicked in at nine months, so there is still hope, but we have to start on a plan B anyway. Kai wants to go for the other ATG, which comes from rabbits, and in a truly bizarre piece of synchronicity he dreamed, on Tuesday night, that he met a friendly giant talking rabbit... We can't really come to any decision until we get the more detailed results of the biopsy, in about three weeks time.
So that was all a little more reassuring and encouraging than before. What wasn't, however, was that our appts were at 10.30 to see the consultant and 11 am for the biopsy. Their letter said to allow a good two hours in case of delays, so I'd worked it out that the 3.30 train would be both less crowded and allow plenty of time for us to catch it. Even with the two hours we would be out by 2.30.
We were OVER THREE HOURS LATE being seen, and for all that time we had to sit in a packed waiting room with people coming and going, coughing and snuffling. I am not happy about it. And of course we missed the bloody train (could have made it had the taxi not been 10 minutes late), and I had to shell out an additional £84 to get us home on the 4 pm train, which was far busier and of course no reserved seats. We managed to find two in the quiet carriage with no-one facing us so hopefully everything will be OK, but I made my feelings known to Polly today at Kai's Thursday appt when I gave her the receipt. I just hope they cough up, as this was absolutely not our fault. Could really do without the stress...
Today has been very busy - usual Thursday appt, washing, shopping, loads of client stuff, then this evening we watched Ender's Game which is surprisingly good and, I'd say, may well be considered a classic in the future. Intriguing, thought-provoking and intelligent film, highly enjoyable.
And tomorrow I was planning a lie-in, but the radiator panels I ordered from amazon are being redelivered at some point so I have to be awake. Eh well. Maybe Saturday...