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... [30/04/14 - Now reached 24/1/2004 - p 41 in the list]
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, 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 weeks 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 62 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.
Thursday, July 31, 2014
Kai's blood review was surprising this morning, platelets at 10 and RBC at 92 - surprising but good. Dr decided he didn't need anything (which was just as well as yet again the platelets weren't ready, lab said they didn't get the order which made the dr very angry as he'd ordered them Tuesday and then rang yesterday to check they'd be ready...) so we went home early.
Mid afternoon Kai says he was freezing and felt like he had a cold. His temp was 38, so we waited half an hour, by which time it was 38.4, and I rang for a taxi to rush him in. Got there about 4.30, they decided to keep him in. They got him a bed down on Area 62 (the Young Person's oncology ward) and started him on intravenous antibiotics. I came home, grabbed his bag, clothes, wash stuff and meds and went back: arrived 8.30, by which time he was in his room (very nice too, desk with wifi of course, a chaise longue style window-seat that can double as a bed for a family member to stay overnight, TV with dvd player, room itself cool, calm and quiet with a spacious en suite) and still feeling rough after the first anti-bios dose. I left at 9.15 to get the 9.30 bus, got in at 9.56, booted up to check in with him on skype, only to find he was offline. Thought he may have closed down for the second round of anti-bios, so went for a shower. He was still offline when I got back, so I tried ringing his mobile. It was off. So I rang the number for Ward 62, only to be told (after ten minutes of confab I could just about hear in the background) that he was over on the young person side and I had to ring a different number.
Rang the number, apologised for bothering them, and explained I couldn't get hold of Kai and was he OK?
He's in bed with a raging temperature being drip fed paracetamol, replied the young nurse brightly.
Jesus fucking Christ!! What sort of nurse says that to a worried mother??
I can't go back in, I'm exhausted. I'm averaging four hours sleep a night at the moment, and I have an appointment with the nurse up at the surgery in the morning for a blood test to check my kidney function (on the new meds). Afterwards Kim's picking me up to get out to Almondsbury to get crickets and rats for Rosa and Feather, and I can't put that off as we're out of both and I can't let them starve, regardless of what else is happening. I shall get in to the BHOC as soon as I can afterwards, but the planned meeting with Ken and his workmates after work for a drink is completely out the window.
... can we rewind a couple of years and have everything work out properly, please?
Labels: medical matters
Monday, July 28, 2014
So - finally managed to get to see Transformers: Age of Extinction and actually rather enjoyed it. It still had far too many explosions and car chases and horrible Bay trademarks, and I could definitely have lived with the bots being less 'human' in attitude (and what the hell? That was Kup, not Hound!!), but the plot was decent, and the film was internally consistent and logical, and followed on well from the abomination that was Dark of the Moon. I think we can probably blame Steven Spielberg for the improvement! The ending sets everything up well for the sequel too. It's definite 'buy as soon as you can rather than wait for the price to fall' fare. I need to see it again, to pick up on the bits I missed the first time.
And our little darlings have been digging in the garden again - in the strawberry bed this time.
We've been having intermittent connectivity problems here - there may be an engineer coming to look at things tomorrow. Or not if they find the problem is at their end. But we were off for an hour earlier, so not sure... Wish us luck.
Friday, July 25, 2014
... heh... assuming having an extra day would mean more time to update the blog was obviously a tad over-optimistic...
What have I been up to? A lot of weeding, hoeing and shopping, of course. Kai's computer components have been arriving bit by bit, and he's had an interesting time building the new machine - tentatively named FenFen. His right-angled cables arrived this morning, so he's now pretty much ready to install the new power unit (he was going to use the one from the old machine, but he's not sure if that was what was causing the problem, so we've bought a new one), move his old hard drive over in the hope that it survived the crash (it has all his fox videos on it), boot it up, and install the OS (Windows 8). I think I'd rather be elsewhere for that so may take myself off to Wells tomorrow, see if I can get some more plants...
The first three Rescue Bots dvds were on special offer on amazon us, so I ordered them for Yule for me, but Ken said we had to check they were all OK so we've been watching them. They're as much fun as I remember, and full of subtle homages to other shows (and although I can't confirm it I suspect that the attack of the lawnmowers in The Return of the Dinobot is a nod to the 'attack of the zombie lawnmowers' in Starscream's horrorscope in the old comics.)
Other than that? There's not so much to do in the garden this year since our neighbour spray-painted his fence - and my greenhouse, the patio doors and all my veg seedlings, and yes it was deliberate, but more on that after I've got legal advice. I'm now having to buy the veg that I would normally be picking from the garden, and I also won't be able to fill my freezer with veg for the winter. I have managed to get my sweetcorn in, and a few mange tout and dwarf beans, but that's it. At least none got into the greenhouse, so my tomatoes and peppers were safe.
Blood pressure was 136 (which is brilliant) over 92 (which isn't so good) at my appointment on Wednesday, so dr has prescribed me Tensaid to supplement the Ramipril. It's a diuretic - oh joy, like I don't need the loo enough as it is! - but the accompanying leaflet says it doesn't produce too much extra urine. Heh. We'll see...
Kai's Thursday appt was a bit of a washout: the lab had got it wrong and ordered his platelets for today (Friday) instead... But they took blood for the cross match, so I'm hoping today will be shorter than usual. There's twenty minutes left on the platelets, then at least one unit of blood over an hour and a half (it's 12.20 here).
But we're actually all too tired for a film, so just going to chill tonight and get client stuff done tomorrow. And next!Poppy (page and a half written today...)
Sunday, July 20, 2014
The Poppy Tales, New World 2, ch 19 - Reconnecting - now posted: link above.
Friday, July 18, 2014
Worked hard today...
Absolutely knackered now and aching all over. Going to try for an early night. Next Poppy will have to wait til tomorrow to be finished (three and a half pages written yesterday...)
Thursday, July 17, 2014
Quick post to link to this - Real Time Lightning Map. We have some major weather heading our way and I have a headache already...
Kai's neutrophil and WBC counts have dropped again. I'll stop posting about them here until something definitive happens.
Tuesday, July 15, 2014
Catch up because I realised I'd forgotten to do the weekend...
On Saturday Ken and I treated ourselves to an afternoon out: went to Street, where we found this!
I've been trying to find Kai a fox mug for ages. GoodTwin did find one but it was a bit abstract and I really wanted more realistic (but thank you anyway!): this one was in the Shopping Village, Royal Worcester bone china in the Portmeirion collection. The design is actually called 'The Artful Poacher' and it's extremely cute! Kai's dead chuffed with it!
We stopped off at the organic supermarket in Glastonbury on the way so I could pick up some organic butter (both Sains and Tesco apparently no longer stock Yeo Valley, which is a bloody nuisance as it's our favourite...) then stopped off again at Wells, where we bought some more plants -
A selection of alpines...
... because they seem to do very well in the rockery (this was planted back in the spring and is now four times as big as originally!)
And this gorgeous artemisia ('Silver Mound' I think: there was no label. It's a bit limp here, needed water, but it's very pretty.)
In the evening we watched Cuban Fury on FilmFlex: great fun! I spent the last half an hour with a big grin on my face...
And last night I watched for twenty minutes while mama fox stood on the six-foot-plus fence - balanced like a cat - while two of the cubs frolicked in the garden...
Monday, July 14, 2014
A silly post because of the date - 14.7.14.
Nothing really to report, just the usual busyness. Currently trying to keep the weeds under control in the garden while we reconsider what is gradually becoming known as the lookout (up at the square where the bench is going to sit once we've got it organised) and the meadow, which is now badly overgrown. We'll keep the vetch - the bees love it - and the cowslips, but the rest... not sure yet...
Later edit: I think I'm going to cry. ALL of my Thunderbird email folders have vanished. ALL of them. Friends, clients, personal with all the kudos and comments from fanfic readers, shopping, book info, all Kai's uni and hospital stuff... everything. I can't get them back.
Later later edit: OK, got everything back, but it took some doing and I've no idea how it worked (or why it happened in the first place). Before emailing Nick to take remote access and sort out the problem for me, I checked the forums (no joy there although apparently I'm not the only person it's happened to) and the different function tabs in Tb itself. And under [Go] I found [Folders] and under that I found [Recent] and under that I found a list of all my subfolders in alphabetical order. So mentally shrugging my shoulders - I could hardly do any worse harm - I clicked on [amazon]... and lo and behold everything went back to normal.
[sigh] I do not need the stress.
Labels: nowt really
Friday, July 11, 2014
Kai transformed Death Starscream for me. He's very handsome!
(I had to clear another shelf as I simply couldn't fit him on the dedicated one. I now have two shelves of Starscreams - 33, with a couple more coming at Yule...)
And as a further example of how things grow in this garden -
- that's Tyjer's catmint trying to climb over the greenhouse...
Thursday, July 10, 2014
A bit of a catch up...
It's been busy. I've been trying to catch up with the garden work (photos shortly), there's been much shopping, I've been re-watching Beast Wars (And thoroughly enjoying it), we've all been watching Transformers: Animated Season 3 (and thoroughly enjoying that, thought I'm not sure K&K are as enthusiastic as me. Last two eps tonight...)
Death Starscream arrived Monday but a signature was required, so I couldn't pick him up until yesterday. I have special dispensation to open him now, so I did: -
- and am in the process of transforming him (having the usual difficulty, plus the instructions are in Japanese...) Will rope Kai in to help later, he's much better than me at following these things.
And on the subject of Kai...
Today's appt was a platelets transfusion as normal - but the doctor says we don't need to go in on a Monday anymore, at least until the transplant. Everything has settled down so we know it's platelets every week and blood every fortnight: unless we're worried about something there's little point in us going in on Monday as well. So YAY!
Also found out a little more about post-transplant procedures. The average stay after the transplant is 5 weeks (although it can be as little as 2), and afterwards there will be regular check ups every week, probably twice a week to start with - early in the am - and a weekly/fortnightly BMT clinic on a Wed afternoon.
[whispering] His neutrophils were up to almost half of normal today, and his WBC count is creeping up too. This is very good, but not enough to get too optimistic about, yet...
So - garden.
I can't recall the real name of this, it's that black grass I bought years ago and thought I'd killed. This year it has flowers!
Will try to update a little more regularly. Only needing to spend one day at the hospital a week, even if only for a few weeks, gives me a little more time to keep everything organised.
Saturday, July 05, 2014
The Poppy Tales, New World 2, ch 18 - Decisions - now posted: link above.
And yesterday my copy of Transformers: Animated Season 3 arrived (will watch the last two eps of Season 2 later then hopefully the first ep or two of 3 this evening) and today my Henkei Ghost Starscream arrived. (He was £15 on ebay and is being put away for me for Yule...) Yes, I now have all of the more common Starscreams and several of the rarities and have started searching for the very rare ones (but only at sensible prices!) I also have a Black Gold Death Starscream on its way...
Thursday, July 03, 2014
[sigh] We knew it was going to be a long appt as Kai needed platelets and blood. Usually they cross match the blood while the platelets are going through (usually starts between 10.30 and 11), so there's only a short wait (30 - 60 mins) afterwards.
Today somehow the request never reached the lab. It was gone 7 pm when we finally got home.
However, I saw Laura (of the transplant team) who was very pleased indeed with the BP and kind of implied that if it was urgent they would accept me now. However, since it isn't, she said to stick with the Ramipril and they'll schedule the transplant for the middle of August (only a few weeks later than the original date). So we now have a rough idea of the timing. I can also bring home three doses of the stuff I have to have to increase my white blood cell count and have them administered at our own doctor's surgery, but the fourth one will have to be at the BHOC as they'll want to do a full blood count afterwards. We're getting closer.
Bouncy yelpy cubs outside the patio doors again last night, but no foxy presents this morning. For which I am quite grateful after yesterday.
Four pages into nextPoppy (it's been a month. I have completely lost track of time. Then again, no one commented on the last one, which made me wonder if people didn't like it...) written today. Hopefully I'll be able to post at the weekend.
Wednesday, July 02, 2014
Well, the good news is that my blood pressure is now down to 148 over 90 - just about normal for me, although it still needs to go down a bit more before the transplant team will OK it. There are other meds I can take, but they have unpleasant side effects and may make me feel ill, so we're keeping them as a last resort: now have to report back to the transplant team and get some dates figured out. In the meantime Dr is very pleased. And so am I.
Last night's fox gifts...
... a used disposable nappy and an ancient gardening glove.
Tuesday, July 01, 2014
Not even really a catch up. Just assume that when I'm not at my desk I'm either shopping, gardening or at BHOC appointments...
Heuchera bed. I think I still have room for three more. I know I want Midnight Bayou, but I'm not sure about the others. I have a lot of dark ones now, perhaps something a little lighter...
Remember I said I really like poppies and was going to plant them up on the slope?
I thought the pigeons had eaten them all. I also thought they were a lot shorter than this!
I'll take another pic when more of the flowers have opened.
And my pears are coming on splendidly!
Last night mum brought the fox cubs - well, they're puppies now, getting quite big - to the garden. It actually got a little scary as they were right outside the patio doors, yelping and scrabbling, and bumped into the doors themselves a couple of times. Fortunately Tyjer was watching from upstairs and didn't show any inclination to come down to see: I think his encounter with the mum has put him off foxes for life. Suits me! And no, I didn't look out, didn't want to disturb them.
They brought a bone with them. Found it up by my sweetcorn - I assume it's part of a cow's pelvis or something. It's rather large!
Friday, June 27, 2014
Lunch on Wednesday. Pasta, tuna, spring onions, cucumber, cherry toms, red Leicester and Cheddar cheese, sweet pepper (and pineapple chunks for me).
Much gardening got done on Wednesday. And a little of next!Poppy was written while Kai was having his platelets on Thursday. Unfortunately I'm now a bit hampered: went out to get a little shopping when we got back from the hospital and the rain had washed mud onto the path at Sainsbury's. I slipped and landed heavily on my left knee, which is now horribly swollen and hurting rather a lot...
Need to take it easy for a few days. There's nothing seriously damaged, and ice packs are helping, but I don't want to make it worse. Got too much to do.
Currently have the Glastonbury Festival playing on BBC3. Pilton's only just up the road but the prices! £210 a ticket this year.
Tuesday, June 24, 2014
This was my lunch today. Half a Galia melon, peeled sliced pear, kiwi fruit, red and white grapes (halved, because of reasons), and homegrown strawberries and raspberries. Never let anyone tell you diets are dull and boring!
And as guessed, Sunday was mostly gardening. All the plants I bought are now in the ground, I have my first tomatoes ripening in the greenhouse, and the sweetcorn is OK, although I seem to have managed to plant the block on a fox run, as four of them (in a line) have been trampled and probably won't survive. I planted 36 though, so should still have plenty come up.
Monday's appointment was nice and quick, and we're stocked up with meds, now, for the next month. Tanked over to The Range for Sodastream canisters and diet Coke syrup when we got back, so stocked up on drinks now too.
My second planting of mange tout and dwarf beans are looking good - hoping to plant them in the veg bed tomorrow. We were hoping to get out today, but Kai's having problems coping with the very hot weather, so will give it a miss for now. I have some client stuff to do, and am yoyoing between here and garden (have already hoed the veg bed today).
Saturday, June 21, 2014
Happy Summer Solstice!
Ken and I went to Clevedon for a meal at the Little Harp for his birthday (a bit belated but still...) He had gammon steak with chips and summer fruit cheesecake with double cream for dessert, I had British Ploughman's followed by a toffee sundae - all extremely tasty. On the way back we stopped at Golden Acres, which was buzzing, and picked up four drought tolerant (I hope!) alpines, a pale mauve and maroon dianthus, a flat leaved parsley (mine is in the wrong place and has to go), a very pretty little dwarf abutilon - and a heuchera Midnight Bayou that I've been lusting after for months for only £1.99!!
Out by Failand someone has planted two fields of poppies...
(Not the best pic, the bus was moving pretty fast)
This is the lily I bought when out with Kim last year (I think it was). It got completely eaten the first year, but this year... freckles!
After dinner we watched the Live Arena Tour of Jesus Christ Superstar that I picked up in Wells ages ago. It's fantastic! Better than the original in most places.
Tomorrow will be mostly gardening...
Friday, June 20, 2014
I am so sick of bloody football...
Thursday appointment actually went reasonably well. The platelets were ready, the biopsy was quick (and Kai just had entonox, which seemed to work fairly well), and while all that was happening they got two units of blood ready too, so hopefully he'll now be OK until more platelets end next week. He certainly feels a little better today, even though his back is still hurting.
It's hot. But not too unpleasantly so, and the temperature drops significantly at night, so sleeping isn't a problem with the windows open. Ken leaves work a little earlier on a Friday and his new office is fairly close, so the bus home usually only takes a few minutes. We went down to Sains to pick up a few bits and pieces, then after dinner watched Time Runners, which I thoroughly enjoyed! Intelligent sf - wonderful change. Though possibly too intelligent for many, going by the stupidly low rating it's been given.
Remember I said I bought some cheap lily bulbs in Wilkinson's? They've all sprouted and the first is flowering. Pretty, neh?
Thursday, June 19, 2014
[GRUMP] Well, the thing that I was hoping might become a thing, isn't now going to become a thing because I'm not American enough...