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 ::
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.
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 4:5 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...
Tuesday, September 09, 2014
Checking in briefly - please assume that if I don't post, everything is just trundling on and we're still waiting to see what happens...
After I left today Kai's en suite plumbing went up the creek again and he's now in room 12. Hopefully to stay. That room has a lovely view out to Dundry and better wi-fi!
Saturday, September 06, 2014
All Kai wants to do right now is get through this couple of days of cyclophosphamide: he can't eat (is having build up drinks instead) and feels thoroughly miserable. It finishes tonight, I think, then he's onto tacrolimus, which - fingers tightly crossed - won't affect him so badly. He's been prescribed codeine now for the pain in his neck at the incision site: it really hurts to move...
After finding a (licked clean) KFC box in the garden a few days ago, this in the honeysuckle plantpot by the front door, and one of Qyun's old balls moved from the meadow to the rockery, we've decided that the foxes aren't bringing us presents: they're leaving their toys strewn around their safespace!
Friday, September 05, 2014
This is the three lumen central line. It's inserted through an incision over the jugular (it'll be about a week before the stitches come out). See why it terrifies me?
Afterwards Kai was feeling fine. Then they put the next lot of chemo through and fine was replaced by awful again...
Thursday, September 04, 2014
It's been a hell of a day.
Had to pick up more pale blue paint before heading into the BHOC, so it was with a heavy rucksack I got out of the lift and was nearly bowled over by the smell. The end of the ward, where Kai is, had a severe plumbing problem - and by severe I mean Kai couldn't use his en suite as there was raw sewage coming up out of the shower drainage hole...
Everyone was running round panicking, getting services in to sort it out and shifting patients into clean safe rooms. I helped Kai's nurse move him up to room 16 (colder, but larger and with a nicer view): we shifted the furniture first then she took him up in a wheelchair (he was white as the proverbial sheet and shaking like the proverbial leaf, right in the middle of a cytokine attack) and got him dosed up with parrots and an anti-bio going through. It took half an hour but he finally stopped shaking and started feeling a bit better, and says on skype now that he's feeling better again, for now at any rate.
He slept a lot of the afternoon - didn't get much last night - which helped, I think. Tomorrow he's being fitted with a central line, and they want him to have platelets first - only he can't take hydro-cortisone for another four or five days. I think they're keeping epinephrine on hand in case of a reaction, but I plan to be there early so I can keep an eye on him.
Wednesday, September 03, 2014
Quick update, very tired.
Kai woke up about 2 am feeling like he had flu - yep, cytokine storm, though more of a shower than a storm, so far anyway. He's achey and miserable, but his temperature and BP are normal (though his pulse was very fast: they took an ecg to check there was no underlying problem). It's worse than he was hoping but a lot better than it could be, so far. He's taking parrots and has had anti-bios, and is spending a lot of time asleep or dozing, which is probably the best way to cope, sleep through it. His appetite is OK so far.
Back in tomorrow - will report back later.
Tuesday, September 02, 2014
20.45: Later edit: down here.
Well, today's the day - we hope. Last night Kai had a temperature and was getting intravenous anti-bios - again - followed by something for his low blood pressure (!!) and then the normal platelets. Platelets were nearly through when I had to get offline...
Chemo. Yes, there are four different things on the go here - hydration, MESNA (which is a thing that protects the bladder, we're told) and two different sorts of toxins...
Catchup. As I've said, I was told about the usual side-effects of the injections, overall aching (though no-one said anything about the intensity or the fact it could be anywhere, including for me my jaw, cheekbones and up around my ears) but no-one mentioned the other side effects - constant nausea and complete loss of appetite (though since they cancelled each other out I suppose that was more or less OK) and generally feeling bloody awful. And come Sunday the side effects of the chemo finally hit Kai too, so we were pretty miserable together...
In contrast, the actual apheresis yesterday was a doddle. Yes, it was uncomfortable - big needle in the crook of my left arm to remove blood, small one in my right wrist to return it, and sitting tilted so my weight was on my lower back (ow) for the three and a half hours it took was no fun, but the only side effect was a general tingling, which was, apparently, calcium deficiency corrected by chewable calcium tablets and a small intravenous unit of calcium phosphate (I think it was phosphate...) Which, as is pretty much the norm for us, took them three bags and two machines to administer, and even then they had to push it through manually. (What is it with me and machines?) Anyway, the actual harvesting was noisy but painless, and it was fascinating to watch the bags fill, greenish-gold plasma and pink-tinged cream-coloured stem cells (I assume it was just the stem cells...)
Almost as soon as they started the procedure I started feeling better, and apart from being completely exhausted last night I was fine. And to my relief they harvested 'more than enough' cells to provide the transplant material, so I don't have to have it repeated today.
Just hope the right stuff is in there...
Afterwards I went down to radiotherapy with Kai for him to have his TBI, which was relatively quick and painless, then back to his room. I couldn't stay much longer, I kept nearly falling asleep, so headed home.
And today I feel fine - a little achey, but I'd expect that. Kai is now on skype (9.45) and feeling a bit better than yesterday - his temperature has dropped too, so please keep fingers crossed. No news yet when the transplant will be - I assume as soon as the lab have prepared the cells - but I'm hoping to be there. Heading off in after I've got the shopping.
Sue, card arrived, thank you. Will take it in.
Lin, forwarded that lovely trawling, but unfortunately it looks like Kai can't receive emails (the connection is a bit glitchy on that side of the building: they think it's the lead in the structure of the old radiotherapy rooms). Will skype everything individually.
Possibly more later after I've visited...
Arrived back from shopping at 11.35 to find a skype from Kai at 11.09 saying, "OK, cells 'any time' so will get time in a minute". Cue mad scramble to get to BHOC in time, and I arrived as they were just being delivered...
The atmosphere was so positive, it almost felt like a holiday. Everyone was so cheerful and upbeat, we couldn't not feel the same.
In the scramble I forgot my camera - these are from my phone camera, which isn't so bad. This one has the donor/recipient details (if you can read them).
At the beginning...
... and at the end, an hour later. The bag on the left is saline flush, which they used to flush out the last of the stem cells in the bag. 'Precious', they said. 'We're not letting any to go to waste!'
It was very strange. And oddly anti-climactic. It looks like raspberry slushie... If Kai is going to get a reaction, it's usually within the first 30 seconds, so we both sat and watched, and everything was fine, and he looked at me and said exactly what I was thinking: 'I don't know if I should sit and watch this, or just go on with what I was doing...'
It's not every day you get to watch your mum's cells (your cells) being transfused to potentially save your (son's) life.
Eventually we did a little of both. And it all went just fine, with no reaction (well, at the end his temperature had dropped to perfectly normal) and him feeling fine too.
This is great, of course, but it's just the first stage. The next possible event is the cytokine storm - and before you check that accurate but quite frightening link, please understand that this is so normal with transplants that we were told what to expect when - not if - it hits. The BHOC have everything immediately to hand to deal with anything that happens, and Kai will be monitored closely for the next however long it takes.
Then again, when have we ever done the expected...
I'm back in again tomorrow, will report back later. So far so good, but there's a very long way to go.
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...