Zone Doubt, a.k.a. 'Surreal Я Us'...
Joules, trusted by... dozens... to make a drama out of your crisis...
:: JAT :: WaveWrights :: Publications :: Joules... on writing [on hiatus] ::
I live to write. It's not wise to get in my way.
August 2011: the earlier posts in this blog are a mess, the result of me changing the format some time ago. I'm working to edit the entire blog from the beginning, but with over 4K posts and sodall time for such luxuries it's going to take a while... [02/09/16 - Now reached 09/10/2004]
If you come across any words you don't recognise in this blog, take a look at the Taylorspeke Glossary in the left-hand infopane, you'll usually find a definition there.
Friday, January 31, 2014
Got to the BRI at 10.05 am. Got home again 7.45 pm.
But the biopsy went smoothly, and they got two generous samples each of liquid and tissue (if you remember, the first biopsy barely got enough to test), which I find quite encouraging. Kai also had platelets (no reaction) and two units of blood.
We're both knackered now though.
Labels: medical matters
Thursday, January 30, 2014
Yesterday the letter giving all the details about the London appointment arrived, including the time - 10 am. I took it in with me today when Kai went for his usual day unit appointment, and our lovely receptionist (I must find out her name. I know one of them (Theresa) but not the other two...) said she'd get a message to Dr Lowry's PA and someone would get back to me. Twenty minutes ago Dr Lowry rang herself.
So it happens that she didn't make the appt with Kings College Hospital: she contacted them to advise that Kai might need to see them at some point (which is what she told us a couple of months ago when this was first mooted) and the Hospital then went ahead and made the appt off their own bat - and didn't even tell her! [rolls eyes] Anyway, she apologised for the confusion and told me that she is more or less expecting the appointment to be needed, but she's trying to find out if there's any way we can get funds to take the train up there off peak hours (I priced fares up yesterday and it would cost us £386 return to get there in time for a morning appointment (and we'd need to get the 6 am train), not to mention taxi fares when we got there) and stay overnight so we can have a leisurely, relaxed visit with appt instead of a panicked rush. Which is really very good of her and would certainly make the whole thing easier.
Whether we need to go or not will depend on Kai's next biopsy, which was going to be 11th Feb but which we may be able to have done tomorrow instead: I have to ring the ward around 9 am and see if there's a bed available. Dr Lowry isn't expecting there to be much if any change from the previous biopsy: I am a little more optimistic. We'll see.
In other news... um... I'm sure there was something, but I can't remember what it was. I'm still proof reading (although every time I try today I get interrupted), but it wasn't that. Eh, I'll add it later if I can think what it was.
Tuesday, January 28, 2014
Yesterday's appt went quite well. Kai needed platelets (all fine, no reaction) but the dr thought he may not need blood until next week (that would make it two and a half weeks). BUT we'll have to see what happens on Thursday...
So we got home before midday, I carried on proof-reading and after dinner we watched Taken (bought it cheap at Sainsbug's). Surprisingly gripping!
Proof-read another chapter today; it's all coming along well. Then half way through the afternoon I took a phone call - from a London university (Kingston? I didn't write it down, but it was Kings-something...) ringing to enquire why we hadn't confirmed Kai's appointment with their haematology dept next Wed...
It seems that Dr Lowry went ahead and made the appt with one of the UK experts in aplastic amaemia - which is fine, but no-one told us anything about it... Long story short, that appt is now cancelled and they'll wait to see the results of Kai's biopsy on the 11th. If things are progressing OK, he may not need to go: if they aren't, the hospital may be able to provide transport for us.
Talk about left hand not knowing what the right hand is doing...
Sunday, January 26, 2014
Right - yesterday was shopping, a little gardening, and proof-reading, and we watched The Imaginarium of Dr Parnassus after dinner. A very odd film...
Today was pretty much more of the same: I've now moved my irises to the rockery (the golden one split naturally into two! Very happy about that, that one was a bit pricey, so having two plants now is great), and am about half-way done with the proof-reading. Still have to prune the medlar, and the top of the garden needs a lot of work, but we're nibbling away at it bit by bit.
Very early start tomorrow so trying for an earlyish night.
Friday, January 24, 2014
Busy couple of days. Yesterday was two shopping trips, today I bused up to Broadwalk for large planters from Wilkinson's, and in between I've been proof-reading Ken's book on St Anne's Well...
[bg] This is last night's footage from the Suburban Wildlife Haven...
Kai had the camera set to film 30 second snippets: this is four of them stitched together with fades in between. Next time he's going to make the duration a minute and see what happens. Now, we think that the one with the bushier tapered tail is the male, while the one with the little white 'pompom' tip of the tail is female - which of course begs the question, are we going to have lots of little foxes playing in the garden later? We'll keep filming and see.
But this is fantastic. They're obviously perfectly happy and at home in the garden, even without food being left out (I don't when it's going to rain).
Wednesday, January 22, 2014
limp with relief...
Got to the 9 am appt early and were seen early - and a different doctor was in attendance. Kai's blood sample was run through the machine (it takes just a couple of minutes and gives the levels of 19 different blood components, of which the RBC (red blood cell), WBC (white blood cell), platelets and neutrophils are the ones we're most concerned with) and I could tell she wasn't completely happy with the schedule (she and the nurse kept asking questions as to when Kai's last tranfusion was and how often he had them) so I jumped in and said I wasn't happy about it either, according to his charts he shouldn't need bloods yet, etc etc... and she agreed with me! It seems I'm reading the charts correctly, which is very reassuring... Anyway, tomorrow's appt/transfusion is cancelled and we don't need to go in until Monday (YAY!! Rest of the week off!!) and I have been told that if I'm ever worried about any aspect of the treatment and not happy with the responses I get, to ask one of the nurses who will pass on my concerns to one of the doctors. They know by now that I understand what's going on, am closely involved with the treatment, and only fuss if I think something's not right.
So - we were home by 10, and I went shopping via the Post Office, and in the Flower Basket a few doors down I found they had three daphnes on sale for just £5.50! Well grown, in flower, and about 18 inches high. Of course I bought one. It's now planted by the front door and smells glorious.
I got some garden work done yesterday too - dug up the sedums (which it turns out I didn't kill after all) and planted my pretty little pink and silver acer in its place. The sedum actually split happily into seven clumps, so there are now three out the front, two by the fence outside the patio doors, and two up on the slope. I weeded around the heathers and the weigela as well, but that's all I can do for a bit, back and legs are aching horribly.
Planning to watch the last four eps of Beast Hunters in a little while.
Tuesday, January 21, 2014
Yesterday was supposed to be a quick appointment, but they were short staffed and had a nurse from the ward helping out - and the ward has quite different (slower) attitudes to the day unit... Kai ended up having his pentamidine nebuliser at 2.30 instead of 12. Though we did still get home while it was daylight.
However, the dr in the unit at the moment is a locum, which would be fine except he wants Kai to have blood on Thursday. That's only a week since his last transfusion, and a comparison of his charts over the last two months indicates he really doesn't need it yet. The same dr wanted to give him hydrocortisone as a matter of course before his platelet transfusion yesterday morning, even though the transfusion admin (and the other drs) said he should only have it if he has another reaction (I objected and was listened to, at least, and the steroid was held ready just in case. The platelets were fine, caused no reaction). Not very happy about all this, and not at all sure I trust this dr. We have to get in tomorrow am for a cross match: if I can find another dr to speak to I will try to express my concerns. It won't do Kai any harm to have more bloods at this stage, but there's the ever present risk of foreign antibodies causing problems further down the line...
After dinner we watched the end of Haibane Renmai. It's a very beautiful anime, many-layered and open to different interpretations. We really enjoyed it.
Last night Kai set up his new wildlife camera (bought with his Yule money) for the third time, and I left out half a tin of lamb and veg dog food in Quyn's old bowl - and we got some lovely footage of our fox! We did get some on Monday night, but it was muzzy - Kai thought the camera lens needed cleaning, used my glasses cleaner and proved he was right. In this attempt the camera was a little too close and the settings not quite right yet, but for only the third use he's done really well. But see for yourself. (It's on my Youtube account as Kai hasn't yet set up a proper one for himself...)
Love the way he scent-marked the bowl at the end!
Sunday, January 19, 2014
I finally got around to sticking GoodTwin's stickers on the completely-rubbed-off characters on my keyboard. 'Oooray! I can read 'em again. (Not very good at touch-typing, me...)
So, not a bad weekend. Quite relaxed: we've been watching more Haibane Renmei and it's getting more and more confounding. Yesterday I treated myself to a few eps of Tf: Prime - Beast Hunters, then we caught the Tomorrow People ep we missed on Wednesday through watching The Hobbit. Hm. Still undecided...
Friday, January 17, 2014
Quick note as I'm trying to catch up on client stuff. We watched the first three eps of Haibane Renmei tonight - it's very strange, if charming. So far we have no idea what's going on, which is rather nice. My Tf:Prime - Beast Hunters DVDs arrived today too, so Ken and I watched the first couple of eps. (Kai's busy building bases on the moon I think.) Hugely enjoyable!
Thursday, January 16, 2014
I believe I'm going to start needing more than 4 hours sleep a night...
Yesterday went quite well. Got some jobs done before the appt: there was a little bit of a bit of delay at the Day Unit as they were waiting for a doctor to sign off a form - which, unbeknowst to me, was the one he had given me yesterday which was in my bag. [rolls eyes] If I'd known I could have waved it at them. Anyway, the cross match took a couple of minutes then we were off home again. I had to dive over to Tesco (then had to do the same again today as I forgot the rice, without which dinner would have been somewhat lacking), then collapsed for the evening.
Today was OK. There was still a delay, as the staff had had an unscheduled meeting (which may have been spurred by my not being able to get through to reception on Tuesday, as they say they've now allocated specific people to deal with medical enquiries), and we met the tranfusion admin, who explained to us that Kai's reaction to platelets on Monday was most likely due to one of the 'pool' of donors that bag was drawn from having an allergy to one of the meds Kai is on. Which is quite a relief, actually. Since he was OK with the second bag they think it was most likely a one-off, so for the moment we're going to continue, with him having piriton before the platelets transfusion (keeping the hydricortisone at hand in case of need). However, if it happens again it may be necessary for him to have 'washed' platelets. We'll keep fingers crossed.
The traffic on the ride home was abysmal. Fortunately we had a right wit of a driver, who welcomed us with "I need a large brandy. I've been in and out of oncolgy four times today picking up and dropping off. Actually, just get me a two gallon bottle and a straw."
Though he did have some amusing stories. He remembers getting drunk in Glasgow and heading off with a hen party (?!?) and waking up the following day in Aberdeen, with no memory of how he got there. Then there was the time he went for a drink with friends and woke up the following morning in Westonbirt Arboretum, 37 miles from where he parked the car with no memory of how he got there, either. (Do we see a pattern forming here?) But the one that had us in stitches was the one where he woke up in a(n empty) child's bedroom, hearing a man and a woman's voice a couple of rooms away, and damn near panicked. Fortunately it was the friend he'd been drinking with last night, and said friend's wife. Apparently he'd ended up sitting under the table in the pub with a stick in his hands, proclaiming he was a garden gnome. But he couldn't catch any fish, because there was no waterfall. Whereupon a friend (?) poured his beer over the table so it cascaded down in front of him in a beerfall.
Apparently this made him very happy, his friend told him.
He'd rather sheepishily asked his friend if perhaps he should get some flowers for the landlady of the pub as an apology, so it's not all bad...
We caught the first ep of Hidden Kingdoms this evening. I think The Howling Mouse would be an excellent name for a band!
Tuesday, January 14, 2014
[sigh] Definitely one of those weeks...
Kai asked this morning how much time he should leave between eating and having the sedative he needs for the biopsy. I hadn't thought about it: said I think it's two hours but would ring to check. Rang the nurses' station at the Day Unit: the nurse said it was four hours, but his appointment was too late for him to have a sedative, and advised me to ring reception to get advice/reschedule the appt. Which I tried to do, only to get the discontinued tone. Rang the nurses station again to be told they were at lunch and to try in half an hour. Waited an hour then rang again - still the discontinued tone. Rang the nurses' station again, explained I couldn't get through: they took a message and said reception would ring me - which they did very soon after.
There isn't an available appt til Feb for a biopsy with sedative, so I've booked that. If by any chance a sooner one comes up we can always change it again.
No explanation of the discontinued tone though...
In other news: Have finished Redshirts. Hm. Planning to do a review at some point soon when I can find a few minutes to spare. Also finished the first two volumes of More Than Meets The Eye and loved them - hoping to get the rest now! Have finished the ep guides for Arthur of the Britons, and we're actually planning to watch Haibane Renmei next: Onna gave it to us years ago and we've never yet managed to even put it in the player. It looks good though, and there are no ep guides on the IMDb so I may do those too.
That's about it, I think. I have some client stuff come in and I still need to do the invoices, but they will have to wait until tomorrow.
Monday, January 13, 2014
Monday hospital appointment: Kai needed platelets, and had his usual piriton dose. All went well until they hooked up the bag of platelets...
Within seconds his skin had gone bright red, his eyes bloodshot and bulging, and he could hardly breathe. I yelled for the nurse, who quickly stopped and unhitched the drip and gave him hydrocortisone (I think it was) through one of his lines. Again within seconds he started getting back to normal - but it was the most frightening thing I've ever experienced. Basically he had a bad reaction to something in the bag of platelets.
So, three nurses and one doctor attending, and me trying to stay out of the way. They got another cross match and let him sit for an hour (with me watching him like the proverbial hawk) before getting a new bag of platelets, and giving more piriton. That went through OK, but before we left I was advised to keep an eye on him, as there was still a small risk of a reaction in four hours or so, once the steroid wore off (which was between seven and eight-thirty-ish) so he's flopped on the sofa all evening and so far seems fine. Well, his temperature is a little higher than normal but not dangerously so.
He'll probably now need to have the steroid, as well as piriton, before platelets (pretty much every week, then). And we have to go back on Wednesday - he needs another bone marrow biopsy, I presume to check the levels as that will be three months since the ATG. Then on Thursday it'll be bloods again (we're back to 10 days between instead of two weeks).
It's no wonder I keep having nightmares.
Labels: medical matters
Sunday, January 12, 2014
Sorry this is all very sketchy at the moment, we're still not back into a sensible, coherent routine and I'm still very tired.
Weather was really good yesterday, cold but brightly sunny: Ken dug up the cherry tree at the square and we planted the myrtle in its place, then pruned the greengage on the edge of the meadowsweet patch. Kai has bought himself a wildlife camera with his Yule money, and set it up last night close to the bowl with dogfood, to see if we could catch the fox. Didn't manage to film anything, so he's going to try again. It's a bit of a learning curve, it's quite different to an ordinary camera. When he's got it working properly and has something to show, he thinks he'll upload it to Youtube, but it might be a little while: the fox doesn't visit every night.
Tonight was pretty normal - shopping, then more Arthur after dinner. Only five more eps and we'll have finished! Bit of a shame actually, we're really enjoying it. On to Star Maidens next!
Friday, January 10, 2014
Thursday's appt was nice and quick. More Arthur when we got back. Today I cleared client stuff, we watched an Arthur ep after dinner then went straight to Atlantis, The Lost Empire, which I finally found at Tesco for £4 and bought on Lutra's recommendation. The animation took a little getting used to, but then we were sucked in. It's absolutely gorgeous, truly enchanting.
Have some pics...
This is just perfect! Exactly how I see sport.
Spring in the Forest...
The Singing Tree is a cosy place to sleep. But it can get a little crowded at times.
And finally, Lutra alerted me to this - Books Come To Life at Bristol central library! Such fun.
Wednesday, January 08, 2014
Oh, and my diddy TF:A Prowl arrived!
So cute! (He was very very cheap from ebay. I've been looking for one for a while, but they were expensive on amazon.)
After dinner watched the first two eps of Arthur of the Britons series 2 - will do the guides later - and then at 9 pm the new Tomorrow People started. Looks interesting: we'll give it a couple of eps anyway.
Tuesday, January 07, 2014
Yesterday's appt went smoothly. Kai needed platelets, hence piriton, hence sleepy for the rest of the day, but was awake for the next two eps of Torchwood.
Today I treated myself to The Hobbit: The Desolation of Smaug (in 3D). Enjoyed it, although some of the action was too fast to focus on properly. Smaug was great though.
And after dinner we finished Miracle Day. I really wish they'd been able to extend to another series, it had such promise...
Sunday, January 05, 2014
Later edit: forgot to say I have today finished the last of the Saint-Germain novels. I am finally up to date (well, until Sustenance comes out, anyway). Tomorrow I start Redshirts, and when I've finished that it's time to read the Warrington Blood trilogy. It's great having books to look forward to and the opportunity to read them, though I could wish the circumstances were different.
Joy again. I think we're sinking...
And another quick catch up. Saturday was relatively civilised and ended by us watching the first three eps of Torchwood: Miracle Day. It was going to be just one but there are three eps on at least the first two discs and we got sucked in.
Today Kai's been feeling more poorly than normal so spent most of the day watching Eden documentaries (some excellent ones of remote Pacific Islands). Ken helped with the shopping: afterwards got a little client stuff done, and took down the Yule decorations. I've also made the felt 'curtain' for the patio doors, which hasn't half made it warmer out here already! Tyjer hates it, he can't pull the curtains aside and look out into the garden now...
Then it was the next theee Torchwood eps - great stuff!
Tomorrow we try to get back to what passes for normal...
Friday, January 03, 2014
Managed to get to the Post Office and Sainsbury's in the sunny break we had this morning, then pottered in the afternoon, doing fiddly little bits of things I've been putting off. Watched the last ep of Torchwood: Children of Earth after dinner, then everyone dispersed to their computers. Kai bought a game - Kerbal Space Programme - with some of his Yule money and is having fun learning how to use it (so far he's built his space station and a supply rocket to get stuff to it, in orbit over an earth-like planet but with more land than ocean): Ken's working on the St Anne's Well book: and I'm catching up with tumblr rps. Our fox visited the garden earlier, but didn't stay long enough to eat what I'd put out for him, which rather makes me think something else got to it first. I shall not be happy if we have rats in the garden again. I could try listening out for him warbling in the lane then diving out to put the bowl at the top of the steps by the meadow: that way nothing would have time to get to it first - but I might disturb him, and I don't want to do that. So pondering that at the moment.
Need an earlyish night, really - stomach is still painful, and I'm tired. Planning to take it a bit easy tomorrow, take down the Yule decorations, glue Midvalley back together (Ken knocked him off his shelf and broke him, but he's repairable), and sort out my Starscream shelf so there's room for my new one (and maybe for the one I have preordered from BBTS for my birthday). Then perhaps start watching Torchwood: Miracle Day, and/or Arthur of the Britons series 2 (they've now posted all my summaries for series 1 on the IMDb!) No doubt the client demands will start again soon, so taking a little time off while I can is a good thing...
Thursday, January 02, 2014
Right, quick catch-up...
We spent yesterday watching DVDs since the weather was so horrible - last ep of Arthur of the Britons series 1 (must finish the ep guides!), then The Fox and the Child (extraordinarily beautiful visually and a fine story, if a tiny bit mawkish at the end), then the first two eps of Torchwood: Children of Earth. I'd forgotten how much I enjoyed the start of the series, and the music is terrific!
Today it was blood and platelets transfusions, and everything was ready for us when we got there at 11. I dived out to bank and The Galleries in search of a calender (got a really nice orchids one for 99p, can't get much better than that!) while Kai was hooked up, and we got home at 4.15 pm. So much better than the old 8 hour day! It's really worth while getting the cross-match early.
Had planned to watch the rest of Children of Earth after dinner, but I got hit with the most appalling heartburn/indigestion out of nowhere as I was cooking: was completely incapacitated (and couldn't eat) for a couple of hours. Combination of fizz to drink, Pepto-bismol and lying down shifted it but I feel like I've been kicked in the stomach. We still managed to watch eps 3 and 4 though (and I still find them very annoying). Will catch the last one tomorrow.
So, nice quiet start to the new year. Hope it continues.
Wednesday, January 01, 2014
Labels: Happy New Year