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... [01/10/14 - Now reached 06/03/2004]
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, November 28, 2014
So after three days of Kai gradually feeling worse and worse, tonight he was worried enough for me to get him into the BHOC (his temperature is fine, rash the same, no obvious physical problems just increasing weakness, muzziness, pain and general ickiness). Bloods taken for review, ecg run and throat swabs taken, and he's staying for what's left of the night so they can repeat the blood review in a few hours, prior to him taking his tacrolimus meds. The dr we saw couldn't find anything obviously wrong, so she thinks it's either a virus brewing in the background, or drug toxicity. We should know tomorrow, before he has his pentamidine nebuliser.
I've just got back. I've been up since 7.30 yesterday morning, and really need to be up by 8 this morning. Is it worth while going to bed? I ask myself...
Sunday, November 23, 2014
Everything still going OK. We went for a walk this evening and watched the sunset at the Callington Rd Nature Reserve - very pretty and of course I forgot my camera...
We did watch Tf: Age of Extinction on Friday, and all enjoyed it (I loved it!) Both Kai and I want to watch it again soon, as it's so detailed it's very easy to miss things even the second time around.
We've nearly reached Season 3 of The Sentinel too - and I've picked us up the complete Twin Peaks, as Kai expressed an interest in it, and it is, of course, the definition of a cult classic. Will start that after The Sentinel.
Thursday, November 20, 2014
Monday's appt was a little worrying - they thought, from his previous blood review, that Kai might have Epstein-Barr virus (extremely common, apparently, the one that causes glandular fever). Luckily his Monday review came back with all the virus markers negative, so that's all good. His RBC and platelets were down on the previous week, but not enough for them to worry about. We'll see what happens next Monday.
Sains had How to Train your Dragon 2, so I picked it up - along with Transformers: Age of Extinction which we're saving 'til Friday, since it's 2 hours 40 minutes long. HTTYD2 is an absolute delight, well deserving the 8.1 the IMDb gives it, hugely enjoyable. Although it rather threw me that the head of the Bewilderbeast looks startlingly similar to Megatron/Galvatron's head in TfP: Predacons Rising (best image I can find is here).
Later edit: there's a similar pic of the bewilderbeast here for comparison, but that image is a spoiler so only go look if you've seen the film or don't mind spoilers.
Kai is feeling generally noticeably better, we're still going for walks nearly every day, and his hair has started growing back. Not enough to tell what colour it's going to be, yet, but enough to provide some protection from the cold (over and above his hats, that is). I have his permission to post this photo (make the most of it, he doesn't like doing it!) so you can see. He's also looking much better these days: everyone at the BHOC keeps remarking how well he looks!
Finally remembered to ring for the results of my x-ray. News is basically good - my hip joints are normal with no unusual wear and tear, and no arthritis (yet), but I have a section of 'unfused bone' at the top of my left femur that might be what's causing the pain. I have to make an appt with Dr Reading for an examination, and may be referred to a specialist. Oh joy. In the meantime, it's not something to be too worried about, so I suppose I just take it as easy as I can manage and not carry anything too heavy. (Yeah, right.)
Otherwise things are trundling along as normal. I'm hoping to get back to Poppy before Yule...
Sunday, November 16, 2014
... where did the week go?
In brief - slow (very slow but noticeable), steady improvement. Kai's been out for four walks (one with Ken) and is finding it easier all the time, though he's tired the next day. He's determined to get strong again as fast as he can though. His excellent appetite should help!
Yule shopping is well underway (folks' parcels were sent off Thursday and arrived yesterday).
Picked up How to Train your Dragon - in advance of HTTYD 2, which is supposed to be out tomorrow, hoping to pick it up right away - and watched last night. Absolutely loved it.
Garden tidy-up continues. At some point I have to fill in all the gaps in the greenhouse with bubble wrap and set my sulphur candle going (then perhaps my cucumbers will grow next year). Everything is now planted except the viburnum - it's not going to sit well where I had planned, so we're going to have to find another position for it.
Still desperately tired. And aching. Legs seem to be getting worse: now waking up at least twice a night with the pain. I forgot to ring for x-ray results on Friday: will try to remember after tomorrow's BHOC appt.
Trying for an early night. Think it'll happen?
Tuesday, November 11, 2014
The garden is pretty at this time of year, even on a grey drizzly day...
Monday's appt went well, everyone still very happy with progress. It was cold and sunny: we went for a nice longish walk in between blood review and seeing the doctor. There's a pretty 'woodland' walk along the side of the hill behind the hospital (I'll try to remember to take photos next time. It's very pleasant and flat, designed for patients to get some fresh air, gentle exercise, and see something natural rather than walls), then a little way down and back up 'cardiac hill'. Kai managed it better than me, although he is very tired today.
We got back before ten (would have been earlier but I had to pick up some more MMF at the onsite Boots) to find my trees had been delivered and left on the patio area, as requested. Made Kai lunch, dived out for a Sains shop (specifically to pick up X-men: Days of Future Past) then we planted them up in the veg bed. Going to look beautiful next spring! I'll take photos then, they're pretty much bare branches right now.
After dinner we watched the new film, and enjoyed it, though I could see the plot holes this time round. It was fun though!
Today is dull and drizzly. However, it seems the problem with the DVD recorder is just with one tape, as it will happily record everything else, so I'm still transferring stuff. Ken's archived material today - the 1987 Second Tiverton Fire Show (great fun, and Ken was in it), a Wire programme filmed at the Galleries that Ken was also in, and currently the Most Haunted Live (2007) which was filmed in Bristol. All four hours of it. [headdeskheaddeskHEADDESK] I cannot adequately express how much I hate that programme. I shall need to bleach my brain when it's over, and I certainly deserve a medal...
Hoping to finish the curtain for this room after lunch.
I probably forgot to say we're watching The Sentinel, an ep a day - halfway through Season 2 now, and thoroughly enjoying it. It transferred surprisingly well and the quality is fine.
Sunday, November 09, 2014
Two thirds of the way through...
It's been completely manic. In the past four days Kai and I have been for two walks while the weather's been nice, one of them to the Callington Road nature reserve; I've done vast amounts of Yuletide shopping; Ken and I have planted the tamarind, cornus and escallonia out the front, the two red cyclamen and the new hibiscus out the back, the tulip bulbs are planted, and Ken's dug the holes up at the top ready for the trees tomorrow; I went to Sth Briz Community Hospital for my x-ray, via the town to search for scarves for Kai (he's feeling the cold, and not having any hair isn't helping. I found a couple of quite nice ones in charity shops); we're nearly halfway through The Sentinel season 2; and we found time to watch Winter's Tale, which I picked up reduced at Tesco. (We enjoyed it. It's only inspired by the book - which is one of my favourite five of all time - but it gets across the ambience of the work surprisingly well. I could have done without the heavy-handed angel/demon thread though).
There was a lot more but I'm tired and my memory is a bit hazy. I still have to plant my irises, and X-men: Days of Future Past is out on DVD tomorrow - will need to pick that up - and I still haven't finished my last curtain, but otherwise the basic clearing up and sorting out of the house is not far off being done. There's always fine tuning, of course, but I do that as I go along.
Have decided to do duck à l'orange for the 25th December, been a while since I've made it and we do like it. Unfortunately I've left it too late to organise anything for our anniversary this year: the Glassboat is booked solid right through December and into January. Pity - it's our 25th and it would have been nice to go there. However, with Kai recovering we've decided not to bother with anything very special out: I've bought a good pork joint to roast and we'll all watch a film together after dinner instead.
Wednesday, November 05, 2014
Another quick update...
Monday's appt went OK: he was given prednisolone (steroid) tablets to take.
Tuesday Kim picked me up and we went to Almondsbury Garden Centre, where I bought a Greensleeves apple tree and an Opal plum tree with the cash the in-laws sent for Yule presents (and which arrived that morning!) They're being delivered on Monday and will grow very happily up in the veg bed. Dropped into B&Q on the way back for large plant pots: going to try to get Kai's little trees repotted tomorrow. It was a lovely trip out and fantastic to chat again. Thanks Kim!
Today's appt was very quick. The biopsy came back saying it wasn't GvHD, although the staff member (don't know his rank - not a doctor but more specialised than a nurse...) said it still could be and the cells to prove it may not have been in the sample... The rash has faded almost to nothing, though, and Prof Marks has said Kai can stop using the cream and start reducing the steroid tablets from tomorrow. Everything is still going very well (I think he said the chimaerism has sorted itself out? It got a bit technical at that stage. I'll try to find out more on Monday), the tiredness is only to be expected, and he must try to keep a little more active. Oh, and around day 100 he'll have a full blood work up, lung function test, and (oh joy) another bone marrow biopsy. Hopefully the last...
The weather was gorgeous today, after yesterday's rain, and we walked down to the park after we got back. Kai managed to make it to the top of the hill - first time since he fell ill! The view from there is lovely:
We've worked out several other walks we can do that won't require too much work, too, so will be incorporating them into the schedule.
And my doctor rang. She's organising a hip x-ray for me: I'll get up to the South Bris Community Hospital (again) on Friday.
Saturday, November 01, 2014
Catch up again - it's been busy.
We were all set ready to head to the BHOC for Kai to have his skin biopsy and pentamidine (which Prof Marks says he should start again to make sure he's protected against respiratory problems over the winter period) on Thursday when they rang us - ten minutes before the taxi was due to arrive - to postpone until Friday as the pentamidine wasn't ready...
[growl] I had my Friday all sorted out, me into town to get shopping at Wild Oats and Better Food (it takes proper planning as they're so far away) and pick up presents as I made my way back into town, then I'd planned to head out to Wyevale Garden Centre via Toys Я Us (to check Transformer figures) and Pets at Home to pick up crickets for Rosa. However, Ken had got annual leave that day and volunteered to take Kai in so I could still have my day off, bless him. Though actually, by the time I got back after that sortie I was too tired to go out again, so used the time to get some bits and pieces done in the house.
Went to Toys Я Us/Pets at Home/Wyevale today instead (in that order - walked out and got the bus back). Wyevale were having their end of season sale: bought a pretty mauve hibiscus to accompany the blue one, a japonica for screening, and a good tall cornus, also for screening, all at half price. Also picked up a viburnum, hopefully for screening at the back. We have a lot of planting to do and it's supposed to rain tomorrow...
Kai is still feeling rough. He came back with a steroid cream, which I've been helping him to apply but which so far hasn't done much good. He's aching and his skin hurts and he's completely exhausted all the time - going to speak with the doctor on Monday.
We both spent Samhain in the Endless Forest... Last year I was but a faun and it was snowing: this year I was a stag, and it was mist-shrouded with blood red flowers falling like leaves...
We joined everyone (and the Big Zombie Deer, the focus of the Samhain romps) on the bridge at the pool...
Travelled to the ruin (baying produced huge bubbles instead of sounds last night! Great fun!)
Then spent some time at Die Drinkenplatz, where strange and mysterious things happen on a normal day. Last night we had rainbows...
Random roses -
A lightning strike (Kai tells me I should post that one to the forum, as to his knowledge no-one has ever screencapped a lighting strike before. I'd like to blame my superfast reflexes but actually it was just luck...)
Giant rocks appearing from nowhere -
And strange pods that puff out square... uh... bubbles? Smoke? Seeds?
Then we all headed off with the BZD and suddenly everything went dark...
Then an eerie - but very pretty - reddish light came over everything...
And we ended up at the 'playground' -
... where the light once again changed to red...
All very exciting and lots of fun!
Tonight it's just been noisy here. I think everyone celebrated firework night tonight instead of the fifth, but no doubt there'll be nothing but bloody fireworks from now until next weekend...
Oh, and my blood tests came back normal across the board. Which is good, though it doesn't help to explain the constant pain. Will have to make another appointment and see where we go next.
Wednesday, October 29, 2014
Catch up time.
Kai started feeling a little rough on Sunday - thought it might be tiredness from the walk, but today he has a slight rash on his back and Prof Marks says it's possibly GvHD: we have to go back tomorrow for Kai to have a skin biopsy. Prof assured us it's very common, and as long as it stays just on the skin steroid cream should fix it. Fingers crossed. Oh, and he's back to MMF tablets three times a day and we don't stop them tomorrow, which had been the original plan.
I had my blood tests and 'flu jab yesterday (and today feel a bit grim, might actually go back to bed for an hour in a little while). But I met Wendy at Temple Meads, and we bussed out to Clevedon for lunch at the Little Harp Inn, a walk along the pier, and stopped off at Golden Acres garden centre on the way back. They were having their end of season sale - most plants on a BOGOF - so I have four new irises, two red cyclamen, and a little tree, one of these, in fact. Not sure whether to put it out the front to replace the cherry, or at the back: will decide at the weekend. Had a lovely day - it was fantastic to chat again!
[sigh] The DVD recorder has packed up, and I still had a handful of tapes to transfer, dammit. The cheapest replacement I've found is £249.99 (most of them have a whole host of things we don't want or need) and I thought it might be cheaper to just buy replacement DVDs of the tapes I didn't have time to do, but three of them are at ridiculous prices. So for now we've deferred the decision.
Tired. I think a nap would do me good.
Saturday, October 25, 2014
All continues well. Went for a walk down the park today and both thoroughly enjoyed it
Adored the DW ep...
Wednesday, October 22, 2014
... and we had a little celebration. Kai fancied fajitas for lunch, and roast pork for dinner (with Belgian chocolate sauce covered chocolate puds nuked and served with ice-cream for dessert), and we watched and thoroughly enjoyed Maleficent.
Kai had his central line out yesterday (took about half an hour and was painful, even with the local anaesthetic), and his appointments dropped to one a week. This afternoon we went for a walk down to the park and sat for a while, just enjoying the fresh air...
Still a way to go, but we're getting there.
Monday, October 20, 2014
So, next Tuesday 9.40 am 'flu jab (Ken's is on Sat) and full blood test to see if we can find out why my joints are still aching like hell and what's wrong with my hip. (Wendy, I should be able to make Temple Meads easily to meet you but if I'm late, just wait or ring me to see where I am!) If that doesn't establish the cause, the next step will be x-rays...
Have been having major tape-to-dvd transfer sessions - all of The Sentinel now done, all of Kai's (from 2 weeks to 2004), an episode of Xena with Craig Parker, and one of the ancient animes I bought back in 94. Still a few more to do but the pile of tapes has seriously shrunk.
Client site content uploaded today too.
Off to recharge as soon as my hair's dry. We were woken by playing, screaming foxes before 6 this morning (they probably woke up the whole road!) after getting to bed after midnight. Just a tad tired...
Friday, October 17, 2014
Quick trip to South Bristol Community Hospital at Henleaze for Kai to have a heart ultrasound scan - no doubt they'll contact us if there's anything wrong.
Ken and I have been advised to have 'flu jabs to make sure Kai isn't at risk this winter. I'll try to get that organised on Monday.
Wednesday, October 15, 2014
Quick appointment: Prof Marks is very pleased, we're to reduce Kai's MMF to nothing over the next three weeks, his central line is coming out next week, and we're hoping to reduce the appointments to once a week soon. Still a way to go, but so far so great!
This is the new BHI atrium. Well snazzy.
We watched Edge of Tomorrow on Filmflex last night - very enjoyable, very unusual. I may not like Cruise at all, but I have to admit he does make good films...
Monday, October 13, 2014
Longer appointment than usual today, as Kai is feeling really awful and they wanted us to wait for the blood results to come back before letting us go (and also took another chest x-ray, just to be sure), in case there was an infection. Luckily not, but his tacrolimus levels are high again, which is what's causing the feeling dreadful, so we have to skip the next four doses and then reduce to 500 am and 250 pm. (I'll pick up the prescription on Wed.)
Tyjer takes advantage of the rare occasions I sit down (usually for Doctor Who) to come and sit on me, right across my legs so I can't move...
Three more eps to transfer and that'll be all of Sentinel season 2. They are great fun!
Saturday, October 11, 2014
It's been a busy couple of days. Thursday appt was fine, everything still going as hoped, although Kai has had a handful of heart flutters/skips since the transplant - not many, and since we've been told it's perfectly normal for a large proportion of the population to have the occasional palpitation it's probably nowt. Nevertheless, they're taking no risks, and yesterday we went in for him to be fitted with a 72 hour heart trace. Only took 20 minutes and it can be taken off to shower. He removes it on Monday anyway and we'll drop it off at cardiology on Wednesday (and I'll try to get some photos - cardiology is wonderful! They have an atrium with real trees!)
Friday was shopping and some more sewing, and I started transferring The Sentinel Season 2 (as of tody I have 10 eps now on DVD. Of 24, so there's still a way to go.) The quality is surprisingly good, and Kai thinks he'd like to see the entire thing from start to finish, perhaps at the beginning of next year. January is always a bit grim.
Pottered today. Tesco shop, tidying up, freezing the last of the apples... I've helped Kai tidy up his room a little (there were boxes he didn't know where to put, etc: it's better now and he can put his daily stuff where he wants it). Still haven't managed much of a day off, but I feel things are a little more under control again now.
Hoping to tackle some garden jobs with Ken tomorrow. He's been out with Dawn today on an art trail up in Clifton...
Wednesday, October 08, 2014
Productive day yesterday. Finished sewing - and Kai got the VCR/DVD recorder combo working. I've spent this morning transferring his ancient steam train and my ancient Exeter historical tapes to DVD. It's not perfect - playback is only in 4:3 resolution - but at least it rescues the tapes before they disintegrate.
Next up, my Sentinel eps. It looks like I might be missing a lot of Season 4, but there's one tape without notes: fingers crossed they're all on there. There was some kind of huge copyright outrage or something about the series, and it's pretty unlikely Seasons 2, 3, and 4 will ever be released on DVD. (Of interest to no-one but me, the voice actor for Unicron Trilogy Starscream, Michael Dobson, is in Season 2 ep 3, Deep Water. Be fun to see him acting!)
Kai is more or less OK but desperately tired. We'll ask about that at the next appt. At the moment he's off the tacrolimus as his levels were too high: several phone conversations with the registrar yesterday established he's been taking a higher dose of the med than he was supposed to, 1 mg instead of 500 microgrammes or milligrammes, I didn't quite catch which, so I have to bus into the BRI to pick up a new prescription this afternoon. Not too chuffed about this, I take the list of his meds we were given to every appt and they copy it all down, so they knew what dose he was on and should have reduced it earlier...
I picked up Warm Bodies a while back, and we watched it on Friday. I never thought I'd say such a thing of a zombie film but it's absolutely charming! Thoroughly enjoyable (as long as you don't mind a bit of gore) and really a delight. On Sunday we watched Now You See Me, which was also a lot of fun, and Ken and I saw Alan Partridge: Alpha Papa while Kai was in hospital: It's very amusing. Looking forward to all the big films - X-Men: Days of Future Past, Guardians of the Galaxy, Hercules (I like Dwayne Johnson, sue me), How To Train Your Dragon 2 (mostly for Kai, apparently all his online friends have seen it and have been saying how good it is, and he feels left out) being released to DVD though - nothing until the end of this month. (Transformers: Age of Extinction isn't out until the 17th of November, dammit.)
I'm also most intrigued by Snowpiercer, and am going to order it as one of our Yule DVDs.
Monday, October 06, 2014
Another nice quick appointment: still all OK, although Kai's a bit low on magnesium (doctor rang me to see if he had any of the whapping great chewable tablets, which we do, and said to take two three times a day until Wed night, should fix the problem), but other than that it's all going well. She suggested I ask Dr Reading for a blood test though, as the aching is unlikely to be G-CSF-related after all this time.
Made the lounge inner curtain this afternoon, looks good and will keep the heat in. We've also now put the heating on, as Kai is feeling the cold.
The top of the stairs... I think it looks pretty!
Sunday, October 05, 2014
Quick catchup - was going to post some photos but they haven't come out very well, so will try again tomorrow.
Kai and I have been down to the park the last two days - just a gentle walk, but it's wonderful to see him out and about. We're taking it easy, of course, and he tires easily - but now he can sit and rest and catch his breath, then get up and carry on. His RBC still isn't back to normal, but it's high enough that that awful exhaustion isn't there any more. The change is fantastic.
House is coming along well too: the landing curtain is made and up, and it all looks quite continental. Very happy with it, and will try to photograph tomorrow. The organza curtain over the patio doors is also back up (the pole hooks pulled out of the wall with the weight of the felt curtain) so next door can no longer peer in. And yesterday Ken dug and raked the soil up on the slope and we moved the bench to its new position. The view is lovely, and will be even better when we get the new apple and plum trees. Oh, yes, I'm reconfiguring the veg bed. Finally accepted there are things that just won't grow for me, and that anyway aren't really safe for me to give to Kai with the foxes regular visitors (carrots, onions, caulis), so I shall focus on the organic sweetcorn, mange tout and dwarf French beans that I know I can grow successfully and that we can't buy. But I seem to be quite successful with fruit, so I'm planning to get another apple tree - a russet variety I think, soft and sweet and juicy - and either another pear or a plum. Probably a plum. I'm rather fond of plums...
So that's the Yule gift money from the folks already spent! Hoping for a trip to Almondsbury: I want well grown trees, 6 - 8 ft high at least so it won't take so long for them to fruit, and I'm pretty sure Almondsbury can provide them. It'll mean paying for delivery, but that's fine!
We're a third of the way through the 100 Days and everything's going well so far...
Friday, October 03, 2014
OK, so, chimaerism...
The online medical dictionary defines it as: "a state in bone marrow transplantation in which bone marrow and host cells exist compatibly without signs of graft-versus-host rejection disease." What the consultants want is a state of no chimaerism - in other words, they want my cells to completely replace Kai's.
And that is a really, really odd, creepy feeling...
Back to more normal considerations.
Went into town yesterday to pick up fabric for the landing curtain, which I made this morning. It's going on a lightweight, slender silver pole, a new thing from Wilkinson's that should look quite good. I still have to make new organza inner curtains for the lounge and hall: they have to be handsewn as my old art deco-era hand machine can't handle material that fine. The lounge window is big, so I'm not looking forward to that...
Decided not to put up the display shelving in our room - less to dust and the room's small, looks less cluttered with less in it. The important things sit perfectly happily on the windowsills.
Kai kept me company yesterday, sitting on the bench while I hoed the slope, but he can't stay out in the sun for long (consultants have been very clear about that, and there is a warning on the voriconazole packaging about protecting your skin from the sun even on cloudy days. OK, he's not taking it any more, but still...) He's looking forward to the cooler, cloudier weather. Hoping to get more gardening done tomorrow when Ken can help with the heavier stuff.
Wednesday, October 01, 2014
Later edit: Appt went very well, everyone is very happy, his weight is nearly back up to pre-transplant, fingers crossed, carry on and see how we do. It's time now for Kai to start consciously getting a little more exercise: planning gentle walks down to the park, and he's asked to use the exercise bike, which is an excellent idea (once we clear all the unwanted books from around it). Altogether a good day. We like days like this...
[Note to myself to explain about chimerism tomorrow...]
Have now checked and added the correct Days.
Tuesday, September 30, 2014
Tch' - still haven't checked the Days... However, found out from the dr yesterday that although as expected the 100 days is a bit arbitrary, the longer Kai goes on without any problems, the more reassured we can be that G-vHD is less and less likely (although it doesn't rule out chronic G-vHD). After the 100 days, they feel safer stopping some of the meds, and life can start getting slowly back to what passes for normal. I'll check the precise days later: I can't remember if the day of the transplant is Day 0 or Day 1.
Bought Kai some cheap Primark T-shirts and sewed little pockets inside the fronts yesterday, for him to tuck the central line and lumens into at night - he said this morning it was a brilliant idea and much, much more comfortable to sleep, so that was good.
Typed out Kai's meds regimen to make life easier:
We will be very glad when he can come off some of these.
Sewed the second organza curtain for our room today: we're nearly finished. Just need to get the pelmets fixed and put up the display shelves. Still more to do in Kai's but it's non-essential.
Finally got to watch Passion of Darkly Noon today (by myself as it's not really K&K fare). Strange and depressing film, interesting to see Brendan Fraser in a different role. Can't say it'll ever be a favourite though.
Sunday, September 28, 2014
Quick catch up because it's late and I'm tired...
I was woken up on Friday by the Day Unit ringing to say to stop Kai's voriconazole and go back to the itraconasole, which should get rid of the blurry vision. We still have thirteen boxes (which sounds like a lot but there are only 15 capsules in each and he has to have three twice a day) so I didn't need to go in to pick any up. In the evening we watched The Lone Ranger, which I picked up very cheaply a few weeks back, expecting it to be pretty poor, but it's actually not bad. Very funny in places, and a good fun film for the end of a tiring week.
On Saturday I went to Wells with Dawn, intending to pick up some more of the alpines for the rockery, but the plant man wasn't there! (How inconsiderate!) I did find a few other things I was looking for though, and it was fun chatting. Enjoyed Doctor Who in the evening (and I really do like this incarnation!)
The usual manic Sunday - washing, shopping, then Ken and I did a little gardening: the sweetcorn have finished (I have two large bags in the freezer) so I got rid of the stalks, then weeded the iris beds, and Ken hoed the veg bed and emptied the small compost bin. And after dinner we watched The Secret Life of Walter Mitty - which was extremely enjoyable, a very gentle film but a fine watch. I like Ben Stiller. He's not a great actor but what he does he does very well.
Going to try for an earlyish night, though it's probably not going to happen...
Thursday, September 25, 2014
Quickie, knackered again. Appt went well, they're still very pleased, but Kai's been having slightly blurry vision, so they got us an urgent appt at the eye hospital (across the road and round the corner) to confirm it was nothing physiological. It's not - his vision is near perfect - so it's almost certainly a side effect of the voriconazole he's on. We'll all monitor it and if it gets worse he may be able to go back to itraconazole, but he was fine this afternoon (and we confirmed there would be no lasting harm done).
Were reminded today of the 100 Day thing, which if I remember correctly (on top of everything else I'm having to remember) means that if everything goes well for a hundred days after the transplant, it can be considered a success (and the disease in remission? I'll try to remember to check that next week.) I'm going to start numbering the days anyway, and will prob backdate the posts too, when my brain is a little more awake.
Monday, September 22, 2014
The doctor was extremely pleased with Kai's counts today! I get the impression he's improving faster than anyone expected. Fingers tightly crossed it continues and nothing goes wrong...
We had to go back in in the afternoon though - Kai's magnesium was low (they can't tell that until after his blood review comes back from the lab. They can check the counts on the day unit in a few minutes, but more detailed results take longer.) A bit annoying, after thinking we had the afternoon off, but it all went smoothly.
I'm exhausted though - hoping for an early night.
Sunday, September 21, 2014
Sunday. Gave Kai his morning meds/washed the towels/got the crickets into their tank/watered Feather and Rosa/prepared and froze the homegrown pears/got breakfast for K&K/did the shopping/made lunch/sewed Kai's wardrobe curtains and pelmets/made the first of the new organza inner curtains for our room/ordered tomorrow's taxi/made dinner/collapsed...
I need a 60 hour day.
Or a holiday, that would be nice too...
Kai is very happy with his new room, although he hasn't found a desk he likes so is managing with the two old ones - he has much more room now. All told, it was a great idea. He's still feeling awful, of course, and has lost almost all his hair (but not quite, and it looks like the sparse strands he has left are going to stay. Planning to trim them close to his head tomorrow, at the moment it all looks a little odd) but is more alert and himself than he's been for a while. Fingers crossed his counts are still improving tomorrow.
Friday, September 19, 2014
Kai's home. He feels pretty awful, is desperately tired, and his hair is coming out in handfuls - literally, he sat with the bin and pulled it out (well, if he doesn't we're only going to have to clear it from his pillow/bed/bedroom floor for the next few days...) But his counts were back up today, the drs says he's "platelet independent" now (must ask what that means on Monday, as I didn't think his platelet count was high enough) and they're happy for him to be here.
Now have nine new meds to learn to dispense, oh joy!
Oh, one minor blot: his immune system is really now gone - he'll need all his childhood vaccinations again, and his system will have to reacquire his resistance to all the usual cold bugs etc - so for at least three months we can't have anyone come into the house (and it would be sensible for us to shower and change if we go out in company before being near him again). We've managed this before, when Wendy and Sue and GoodTwin have visited, but this is just a heads-up for any potential autumn visits.
Heh, that wasn't very eloquent. But I'm knackered, so please excuse me.
Thursday, September 18, 2014
Quick check in:
I forgot to say Kai was moved down to TYA on Sunday (I think it was) - back to the really nice room with the picture window and dedicated desk, so the last few days have been much more comfortable for him. His counts today were a little down on yesterday, except for platelets, which were up to 48, but stopping the G-CSF most likely accounts for that. WBC is still way up, which is great.
Still hoping to be discharged tomorrow if all goes well. His room here is basically ready - I still have the wardrobe curtains and the pelmets to make, and everything needs to be tidied up and put away, but Kai will need to do that himself.
Oh, and he's started losing his hair... He's not bothered, but I've started looking for a hat for him. Fox related if I can find one. Will check out Etsy and Redbubble at the weekend.
Wednesday, September 17, 2014
Update time while I take a break from painting/organising Kai's new room.
We were told that the usual time to see changes was Day 14 after the transplant: that would be Sept 16th. For us, things started happening on Day 13 (my lucky number...)
Have some numbers! (Sorry about the formatting, tables have been deprecated and I don't have the energy to hunt down the correct coding... WBC = white blood cells, RBC = red blood cells.)
Normal Range Sept 12 Sept 13 Sept 15 Sept 16 Sept 17
WBC: 4.00 - 10.00 0.02 0.03 0.36 3.22 7.95
RBC: 4.50 - 5.50 2.47 2.50 3.24 3.32 3.59
Platelets: 150 - 400 11 6 22 28 38
Neutrophils: 1.50 - 7.50 0.20 2.50 6.04
In short, this means the transplant has engrafted and Kai's bone marrow is making white blood cells and neutrophils again. And very quickly too (but then, I always did work at speed!) It's being helped by the injections of G-CSF, but that isn't what's causing the increasing counts, that's all him.
This is the first hurdle over - there are still plenty of things that can go wrong. The next potential problem is GvHD (graft versus host disease) which can be very nasty. However, the team is so pleased with how things are going that as long as nothing negative happens in the next couple of days, Kai can come home on Friday.
For the next few months we'll be at the day unit at least twice a week for check ups and reviews of meds - and he'll have to take penicillin for the rest of his life as his spleen won't be working properly (I didn't quite catch why, will try to find out) and certainly for the next year he'll be on a variety of different drugs. However, so far it's all good. Please keep the positive vibes/'fluences/wishes going, it's all helping!
... not sure now whether to go sit on the bench at the top of the garden and cry a year's worth of held-back tears or run around the house screaming... Ah, actually, I don't have time for either, need to carry on upstairs. I've now got five days less time than I was expecting to get the room ready and everything scrubbed and sterilised again...
Sunday, September 14, 2014
Room 12's shower drain was blocked: they improvised and built a towel fort around it so he could shower, but all the same... and today when I arrived he was sitting in rm 4 while they had an engineer in to sort out the plumbing as the loo was playing up too. [sigh] It's the building's infrastructure: the day unit is all new and everything in the BHOC has been upgraded, but the plumbing systems are older and they aren't fully up to the job of coping with the current use, and it's not the sort of thing that can be quickly fixed.
He's back in rm 12 now, hopefully with the problems solved and the room deep cleaned. He's aching (prob the result of the G-CSF they're giving him) and generally feeling awful, and on Wednesday (I think it was, the days are just running together now) he had his first reaction to a blood transfusion - swollen lips and eyes and a rash. Not as bad as the platelets reaction but still frightening. It may just have been that one unit: he's been OK since but they are giving piriton and a half dose of hydro-cortisone before blood as well as before platelets now. If it happens again they'll move him onto washed blood (I had no idea that could be a thing but Kai tells me if it contains protein, it can be washed). That procedure takes as long as washing platelets though - min four hours - so we're keeping fingers crossed it was just a one off.
Overall, however, the whole thing could have been much worse. They've told us this week is the absolute earliest we could expect to see any improvement, so will report back as and when.
The view from rm 12's window.
At home I've finished the painting in the small room and we're moved in (the bed is the other way around from the large room and I didn't sleep at all well last night, kept feeling like I was falling out!) and the large room is slowly taking shape. All Kai's stuff is in there, and tomorrow I start painting the teal wall pale blue, so it's all light and airy in there. I still have to sew the wardrobe curtains, oh joy... He's going to treat himself to a new and decent desk - possibly a corner one, he likes those - once I've measured up the available space. So that project is coming together nicely.
Flowering lithops ('living stones'). Cute little succulents.
Tired and hoping for an earlyish night...