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.
Friday, August 29, 2014
Edit: and then I forgot to say! Asked to have my BP taken, and to my joy and relief it was a perfectly normal (for me) 140/93, on a normal day when I wasn't overly stressed nor overly relaxed. It's been around that now for a month: I won't be able to get it down any further without losing more weight - which is planned, but not before Monday! Anyway, point is there now no reason for any hesitation over me donating. This is very good.
Wednesday update... I was sitting with Kai when head nurse Nick popped down from the day unit with a puzzled look on his face, asking if I was in for anything. I said yes, to visit Kai, but I'd see him tomorrow at 4 for the first of my injections....
[sigh] Long story short because I'm tired, my injection schedule had somehow not reached the day unit (where the actual injections are supposed to be done). [headdesk] These are pretty bloody vital for the whole procedure to go ahead. So after a bit of panicking it was decided I should get to the day unit at 11 on Thursday morning and they'd administer the first dose - and take it from there.
At least the pharmacy sent the right stuff. Injection was no bother (well, there were two and the second one pranged a nerve, so that was a bit ouchie, but overall it was a couple seconds of discomfort and back to Kai, whose room is at the other end of the corridor.) I was warned it could cause aching, so I was anticipating it (I have constant aches anyway), and last night it was distinctly uncomfortable. The second one this morning has left me even more so, even with taking parrots (can't take anything else on the BP meds) so I am not anticipating a good night. But it's finite. And the chemo is now making Kai feel pretty poorly, so I can hardly complain...
Oh, if anyone would like to send him a card, his address is:
Foxes and funnies (especially science related ones) would be most appreciated!
Wednesday, August 27, 2014
So, after sodall sleep on Monday night, yesterday we headed off in to the BHOC at 9 for the appointment at the Brachytheatre at 9.30, for Kai to be measured for his TBI (total body irradiation). Estimated time was half an hour, but it only took five mins, then we headed up to the day unit for review and admission (that was scheduled for 10.45, so Kai had a book ready...)
We arrive at 9.45, to have Hilary (one of the senior nurses in charge of the day unit) usher us into one of the consultation rooms, saying, "I've just tried to ring you - the anaesthetist was here at 8 am looking for you...")
Turns out we should have been told that Kai was due to have his PICC line put in early in the morning. (Except he has to have platelets before anything like that and yet again the platelets weren't ready, the lab claiming again that they hadn't got the bloody standing order for them that the BHOC doctors keep ordering, and they wouldn't be ready until midday at the earliest and more likely later. I can see I'm going to have to make another official complaint. Like I need the hassle.)
I pointed out we'd had nothing from the transplant team to let us know the schedule. Nothing at all. We should have had a letter - or at least an email - with all the details.
Turns out the transplant team coordinator's father was suddenly taken ill and he apparently just up and left and flew back to India without fucking handing over to anyone. Which, as the consultant in charge of Kai's case said, was completely unacceptable.
Damn right it is!
So, all in all a great bloody start.
At least his room was ready and is quite pleasant, with a nice view (even better one from the vestibule, out over the city and out to Dundry and Kingsdown). So we got him settled, he finally got his platelets at 4 pm, then went straight down to have the PICC inserted (I went with him, it was quicker and easier than the first time, but then we knew what to expect), then it was back up to his room and dinner (sausage hotpot with chips and green beans - nice big portion, smelt great and Kai said it was very tasty, so at least I know he had a decent meal last night).
They hooked him up to a hydration fluid all last night (eight hours) which meant he didn't sleep very well, and apparently the lab are several hours late with his first batch of chemo this morning. That's less urgent, as there's some leeway now he's actually been admitted. Still annoying though.
However, we now have the schedule, and it is, as one of the doctor's called it, pretty brutal. But we feel fairly positive about it all, and Kai said he's just going to fight all the way. But he wants me there as much as I can be, so my time here will be a bit hit and miss for a while. I'll report back when I can.
The actual transplant will be on the 2nd. Your positive thoughts and 'fluences are still most welcome: quantum entanglement is random but things do get through...
Saturday, August 23, 2014
So that's the new Doctor. I like. I like very much. And that ep had the ambience of some of the really creepy first series episodes too. Unfortunately next week is the bloody pepper pots again [sigh] but we'll see.
We really need to prune the apple tree this autumn, the fruit is so abundant it's dragging the branches down to the ground...
Things we've watched recently... Noah (on Filmflex. Weird. Tries to be all things to all people and doesn't really succeed at any of them), Divergent (disappointing), Captain America: the Winter Soldier (basically bought as we're collecting that entire 'verse of films. It's OK, well done, enjoyable, but Cap was never one of my favourites.)
Other news - not much. Packing away the extraneous stuff in our room continues apace, and I had my hair cut today.
Thursday, August 21, 2014
Decided, now I have the new computer, I'd try to get the speakers working again - to drown out the almost-nightly shouting and swearing from next door, if nothing else: last night I could still hear it in the bedroom (though admittedly not well enough to hear every word, unlike downstairs).
Three months after I bought the previous computer, the speaker software packed up, and I've only had music through the headphones since - which is highly inconvenient with wet hair. I packed away the transformer and cables, and forgot about them until recently. Ken said they were in the big box of cables up in his cupboard, so he looked it out for me yesterday...
Kai and I spent an hour and a half digging through it (I'm pretty sure half the cables can be ditched!) but couldn't find them. The old Netgear transformer worked - but the only cables we had were too short. I'd pretty much resigned myself to buying new when Kai said, "I'm sure there was another box..."
So I scrabbled through the cupboard and found a box with the old phone cables and Ken's soldering iron.
... and a box labelled 'Joules' speaker cables and transformer'.
Five minutes later I have sound! Oh, this is nice. Doesn't have to be very loud to make everything else unhearable, either (although adjusting the three different volume controls all to max will shake the windows. If I ever feel like it. [g])
After the transplant it's going to be a while before Kai can go out, once he's home again, so on Tuesday we went to Severn Beach.
As usual the train was pretty much deserted, and the weather sunny, cool, breezy with scattered showers - actually perfect as far as we're concerned.
We walked out as far as The Pipes, further than last time and Kai had a lot more energy, striding along like he used to. We sat and had lunch on the headland - and then noticed that the rain in Wales was getting closer...
(I still get a kick out of standing in England and being able to see another country across the water!)
... We - mostly me - were distinctly wet by the time we got back to the station. But it was a fantastic afternoon, and Kai really enjoyed it, and he wasn't too tired the next day, so that was all good.
Yesterday I had to get into the BHOC to collect Kai's aciclovir (forgot to do it on Monday) so took advantage to pop into Primark to pick up some new trousers for me (the sweat pant sort I usually wear because they're so damn comfortable) since my current ones now won't stay up. To my delight I've actually dropped two sizes! Going to pick up a couple more while I'm in town next week Ken could do with a new pair and Kai goes through his like no-one's business...)
Today it's more general tidying and blanching/freezing the mange tout and beans I managed to grow.
Oh, and we've decided that we're swapping rooms: Kai uses his as his office and really doesn't have enough room for his desk, table and computer along with bed, chest of drawers and all the other paraphernalia in his bedroom, while all we have is the bed, two bedside cabinets and a small bookcase, and all we do in ours is sleep, so it makes sense for him to have the larger room. It's a bit of a logistical nightmare, as I'll need to paint his purple wall pale blue and the feature wall teal, and paint our teal wall pale blue, and swap over the curtains and pelmets and make long curtains to cover the 'wardrobe' spaces on either side of the chimney breast. One of those will be Kai's wardrobe and the other one will house all his (five) guitars (YAY! They'll be tucked out of the way and gathering less dust at last...) In the meantime, in order to fit our clothes into Kai's fitted wardrobe I've had to reduce my clothing by half (several large bags went to charity, all stuff that I've gone off, will never wear again, or is too big): Ken still has to do his. That'll be fun. Not. (The overflow will go into the large cupboard in Ken's office - mainly coats and jackets.)
But the end result will be worth it. And we know we're fine with the smaller room: it was our bedroom for a couple of years when we first bought the house.
Monday, August 18, 2014
Just platelets today - RBC was at 92 (actually quite high) and neutrophils at .50. And my BP was 139/92 - not too bad at all. There'll be a letter confirming the schedule, but we've been told Kai will be admitted to the ward on the 26th ready for the final 'conditioning' - basically the radiotherapy to kill off the rest of his immune system. Which is an absolutely terrifying thing to type...
Friday, August 15, 2014
Work-ups went OK. Of course, I was so stressed and worried that they'd say my BP was too high that it was through the roof when they took it. Just as well I had Dr Reading's letter with me. After some deliberation the transplant team have OKed me to donate, with an average BP of 146/90 (rather better than the 197/120 that I started off with in May. I can also confirm I have lost two stone in that time...)
So - barring catastrophes - we're all set.
Wednesday, August 13, 2014
Well, we're back home, and Kai's had his echocardiogram. Tomorrow is the respiratory tests and TBI (total body irradiation) meeting: since he had a chest x-ray when he went in last Sunday looks like he doesn't need another. He'll be admitted to the ward five days (I think) before the transplant for his 'conditioning', which includes the radiotherapy. I get my full work up tomorrow, and I now have my schedule: four days of injections of granulocyte colony stimulating factor (G-CSF), and since this is from Thursday to Sunday (28th to 31st Aug) I think I'll just go into the BRI. I'll be able to ask any questions I've thought of in the meantime then. Then 8.30 am Monday 1st and Tuesday 2nd September it's the related donor peripheral blood stem cell collection (PBSC - my bit) and, I believe, as soon as that's done and prepared, they give Kai the transplant (either on the 2nd or the 3rd - it has to be done quickly I believe). For him, it'll be like a normal platelet transfusion.
And then we wait.
And cross fingers, fast, will, pray, sell soul to the devil, "... make a deal with god, and get him to swap our places...", whatever works...
It'll be a minimum of a week before we know anything, and more than likely a lot longer.
I think Kai is relieved it's finally going to happen, and seems optimistic (at any rate, he was wondering whether it would be OK for him to go to conventions and concerts 'once I'm sorted'. We'll get advice about that but I can't see any reason why not).
Oh, yes... although my blood pressure still isn't quite as low as the transfusion team want, Dr Reading has decided it's now at a level that's normal for me (when stressed! 148/96 this morning) and is perfectly OK with me donating. She pointed out it does vary, and did reach very close to the 140/80 they requested a couple of months ago. She's given me all the readings she's taken (and is extremely pleased I've done so well - so am I, and two stone gone now) to give to the transplant team tomorrow. If the Day Unit can wait an hour or so to take my BP it'll be lower, as it's less stressful away from home at the moment. We'll see, but we're kind of committed now...
Tuesday, August 12, 2014
Things are stable. I'm not going to say anything more in case I jinx it...
He finished the anti-bios and his temperature was down to normal, but they decided to keep him in overnight to be on the safe side.
And now he has a temperature again.
They've had to remove the cannula in his hand (we think the needle was too big, it was unbearable) and put a new one in the opposite elbow, and are giving IV paracetamol to tackle the temperature. He's really not having a good day.
Quickie before I make fajitas and head in...
They took the PICC out yesterday - a very quick and completely painless affair. Now they have to schedule putting in another, either on the other arm or a central line. (I'm hoping not a central line: they scare me.) In the meantime he has a cannula in his left wrist (where they found the best vein to use temporarily) which makes it difficult for him to use that hand...
If everything goes well and they're happy, there were mutterings about discharging him today. However, we have to go back in tomorrow. Remember all those checks we both had to go through a month or so ago? We have to go through it all again to make sure the info is completely up to date. It's Kai's respiratory test tomorrow. On Thursday, along with the normal appointment, he has his ecg and chest x-ray, while I get my ecg, full bloods, weight and BP done. Not sure if I have to have another x-ray or not. They've also booked Kai in for another complete dental check up: going to ask if that's really necessary as nothing has changed there. It probably will be though...
Monday, August 11, 2014
Kai woke up yesterday feeling worse than normal: watched a couple of films and we kept an eye on his temperature. Come 4 pm it was 38.4°: I rang the hospital and they said to get him in. So he's back in Area 61 under observation and being pumped full of anti-bios again.
At least his room has a wonderful, huge window with a splendid view of the sky...
Saturday, August 09, 2014
Pretty sunset last night...
Thursday, August 07, 2014
Quick appointment as Kai had blood at the weekend and platelets on Tuesday. We saw Prof Marks, who says my apheresis is to go ahead on the 1st and 2nd of September, so I guess Kai's transplant will be on the 2nd. The blunt facts are haploid-identical transplants have a 50 - 80% success rate: they've put Kai's chances at 65%. There are a lot of things that can go wrong, at least one of which can be fatal, but the Prof is cautiously optimistic, as Kai is young and fit apart from the AA. If it doesn't work and nothing else goes wrong, he should be in the same state as now. I did ask what would happen then but he said to take it one step at a time...
I'm not going to talk about this again until after the event.
Tuesday, August 05, 2014
Kai's home - was discharged 9.15 pm after platelets. He's looking and feeling much better, and has 5 days' worth of other anti-bios to take before going back to a (reduced) dose of ciprofloxacin.
Tyjer couldn't get enough of pettins from him! Cat missed him as much as we did I think (and not because of bed, he's not allowed in Kai's room!)
More tomorrow - I'm knackered.
Monday, August 04, 2014
Quickie because it's been a couple of days. Kai is slowly improving, his 'infection markers' are considerably reduced, and there's mutters about selecting a day he can come home, which is very reassuring. No news yet as to whether they need to remove the PICC, but I'm hoping that means they're happy to leave it in.
More as it happens. Sue, will get back to you when I can but probably not for a few days - I'm knackered again and have got to try to get more sleep.
Saturday, August 02, 2014
Back from the hospital. His temp is still at 37 - not gone up so that's good - and while I was there the doctor arrived with the culture results. It's a staphylococcal infection, which possibly entered via his PICC (apparently it particularly likes plastic). He's on additional anti-bios, but there's still a risk the PICC may have to be removed, which is going to increase the risk of infection every time he has a canula instead - plus it's painful. Keeping fingers crossed the new anti-bio knocks it on the head and he can keep the line...
One of the nurses on Area 61 is a young lass called Kai (though maybe not spelt that way) and another is called Kaiya. They were joking he wouldn't forget their names.
I also keep forgetting to say: the lumens on the end of the PICC line are red and purple, Autobot and Decepticon colours respectively!
Friday, August 01, 2014
Nurse took his temperature while I was there, and it had come down to 37, which is definitely heading in the right direction. He was feeling a bit better too (though only a bit), but very dozy: he'd been given anti-sickness meds that worked but made him sleep. In fact, he slept most of the two and a half hours I sat with him, but he had perked up a little by the time I had to leave - even managed a small smile. We're not there yet, though, so please keep fingers crossed and 'fluences flowing.
Kai was on skype this morning. His temperature was at 39.9 last night, but had come down to fluctuating between 38.2 and 39. He was still on intravenous paracetamol and anti-biotics, but warned me he was probably not going to be on skype much. I've done all today's jobs and even managed a small bowl of salad, and will be heading in very shortly. More when I get back, hopefully.