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... [25/06/13 - Now reached beginning October 2003]
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.
Sunday, March 09, 2014
Kai is 19 today.
He should be going out later to celebrate with his new university friends.
It's becoming harder and harder to stay positive.
Friday, March 07, 2014
Um... everything OK - well, as much as normal. Appt as usual yesterday. Plants planted, pea seedlings and spinach now showing, cucumber, toms and pepper seedlings need to be transplanted soon, and the cauli seedlings are ready to go in the coldframe once it's been weeded. Kai feels better after half an hour in the sun in the garden and will try to get out there every time the weather is nice.
In other news...
Kood, too. Old Kood got leprosy and his skin melted off. No, it's not an Ipod, it's a £14.55 clone from amazon. Not brilliant, but the sound is OK (better than old Kood) and it's pleasant to use. It'll do nicely until I can afford something better.
*g* I transformed animated Soundwave - this is him playing Laserbeak...
Jonathan Creek new series ep 2 on at 9. Ep 1 was quite fun...
Tuesday, March 04, 2014
OK. So, Sunday went pretty much as usual. I managed. After lunch we watched the newly restored and remastered Metropolis that I picked up last Monday...
Wow. Multi-layered, complex and incredibly subversive in places. We loved it!
Monday... heh. I'd been so focused on making myself walk without staggering too much I hadn't taken into account that the taxi would be moving. The meds handle any nausea (haven't experienced any since Tuesday night, fortunately), so that wasn't a problem, but oh, it felt very very peculiar. They sent one of those big, multi-person cars too, the sort you have to grab onto handles and climb into. Not easy.
But we got there, even though I had to hurry into reception so I could sit down and stop the world spinning. The appointment went fairly smoothly, although there was a delay with getting the washed platelets to the day unit. Kai used the time to catch up on sleep, and I wrote a story I'd promised a friend a couple of months ago but hadn't been struck by the setting inspiration until last week. (Typed it up when we got home, and she likes it very much, so that's good.)
We headed back about three, and the taxi ride home was even weirder than the one in. My head was insisting I was floating - as in, no gravity - while my body was saying "don't be so bloody stupid, you can feel every turn and bump in the road..." Again, no nausea, but I found I was looking further. Hm. Normally I (we? I'm sure other people do it) focus on the things in the immediate vicinity - the other road users, the road itself, the people and buildings alongside the road. I assume it's a hangover from driving, even though I haven't driven in twenty years. But on that trip I found myself looking at the spaces and angles between the buildings, looking down roads and lanes to see the vistas beyond. And colours were... more distinct, more intense than normal. The mounds of moss on the hillside at Arno's Vale cemetery were jewelled, and where the buckthorn is just coming into flower the trees are covered in stars.
Bizarre but beautiful. I've never taken LSD (given my deep desire to fly I was always afraid I'd try leaping off something high and damaging myself) but I assume the effect would be similar. I have no idea what caused it - maybe because after a couple of days of only taking half the dose of the meds I took a full one to make sure I could cope with the trip? Maybe because I've been stuck in the house for nearly a week, when I would normally be ought and about at least once a day, if only to get shopping? Whatever caused it it was positively inspiring!
Kai was very tired when we got back - piriton always does that - so flopped on the sofa and watched 2001. 1968! Ye gods I'd forgotten it was so old... We seem to be working our way through the classic s-f collection at the moment. We already have When Worlds Collide, War of the Worlds (both versions), The Time Machine (both versions), The Day the Earth Stood Still (both versions): I need to get Forbidden Planet and Things to Come... In fact...
(Ten minutes later) OK, ordered from amazon at very good prices, along with This Island Earth - not such a classic but they had it cheap.
OK readers, what are we missing? Suggestions as to other s-f classics welcome!
Where was I? Oh yes. Kai enjoyed it, except for the self-indulgent and pretty incomprehensible ending (and to my shame I can't remember how the book ends to explain it, so will have to look that out and remind myself. Kai might like to read it himself). I do enjoy our film-watching sessions - it's great to discuss them afterwards.
The weather is glorious today. When we've had lunch we're heading gardenwards: Kai says he'll plant for me while I oversee. We have the dianthus' and irises, thyme and rosemary and the rest of the lavenders for the slope, and I've just been given a pretty little narcissus from one of my APAG colleagues (I have been really touched and surprised by how kind everyone is. I've had cupcakes and tulips, the plant and lots of offers of help. I'm not used to it! It's lovely to know that people care.)
The fresh air and exercise will be good for us both.
Saturday, March 01, 2014
Well, my head isn't spinning quite so much when I turn it when I'm sitting down, but standing and walking is still a little problematic. Then I remembered I have my great-aunt's cane...
Soddit. If I have to wobble around for a bit longer at least I can do it in style!
I was in a cleaning/tidying mood. Since the house is pretty clean at the moment, it seemed like a good time to get some serious computer tidying done. My new machine's burner runs at x48 (the old one struggled to top x16) so I backed up all my mp3 singles (heh. 7 minutes to burn two discs, just under 700 megs each, 179 and 189 files respectively. I do like this new machine...) Then I archived everything from last year, then took an hour to delete duplicate folders etc. Then I did the passwords...
Five minutes in I remembered why I hadn't done it for over ten years. The sheaf of papers was half an inch thick at least, and some of the sites I still had passwords for ceased to exist years ago. It took all afternoon (checking which ones still worked and deciding whether I wanted to rejoin the ones that didn't) but I whittled it down to just two sides, double column, A4 paper. Not bad for an afternoon's work. (Written direct to pen drive of course and the file later shredded with AVG - I don't keep that sort of information actually on the computer.)
So a highly successful day, all told. I'm a bit tired now...
Later edit: Forgot to say - I finished MTMTE 5 with a, "But they can't end it there! It's too good! I want more!"
And then I noticed the words under the words THE END... 'The story continues in Dark Cybertron Vol 1...'. So that's now going on the wish list!
Friday, February 28, 2014
Right - catchup...
Firstly, no, the blasted BPPV hasn't gone, although it is a little better than it was yesterday and the day before, which is encouraging. The meds (prochlorperazine maleate 3mg buccal tablets) do seem to help a little, and of course I'm learning to cope (although today everything's developed an annoying tendency to tilt to the right: the screen looks as though it's 2 - 3 degrees off true). Walking is a trial, and I still need to have something nearby to grab if my balance goes, but otherwise I can manage. Well, I made dinner yesterday and have managed to put a wash going this morning, so I'm not exactly helpless. And at least I've stopped throwing up. I wouldn't wish this on anyone though, it's horrible.
As I discovered yesterday, sitting here at the computer is actually the most useful thing I can do at the moment (well, that or lying in bed, but damned if I'm going to waste time doing that! Not to mention it kills my back...) even if I'm a bit slower than normal. My lack of balance doesn't matter too much when I'm sitting, and focusing on the screen stops everything moving quite so dizzyingly. As long as I take breaks every now and then I'm OK.
We're now all organised for the London trip - and yes, it is necessary. We spoke to Dr Lowry on Monday after Kai's blood tranfusion, and the last biopsy shows no change: Kai's bone marrow still isn't working, and there should have been some improvement by now. When we've seen the specialists we'll have more of an idea which treatment to try next (and of course there is always the remote chance that the ATG could still kick in, even though it's been nearly five months now). That's in a couple of weeks' time. Other than that, Kai is now having washed platelets, and for Monday's transfusion they tried them without the half dose of hydrocortisone - and he was fine. The less of that stuff he has to have the better. He and Ken went over to the Callington Road nature reserve (a little further on from Tesco) on Wednesday and he thoroughly enjoyed the walk, and even caught the sun a little (yes, we actually had a sunny day!), so is looking better at the moment.
Kai and I watched Erik the Viking and thoroughly enjoyed it. I'd forgotten quite how thought-provoking the film is. We watched the original theatrical release: the director's son's version has had a good 20 minutes removed, and even though the blurb recommended it as a superior version, we thought we'd watch the original first. (I'll try to watch the other version sometimes soon). And last night we all settled down with Thor: the Dark World, which I bought on Monday to watch for my birthday...
Very enjoyable (apart from that hugely irritating Darcy character). And the film makes an effort to address something that really bugged me in the first film: the story is about Norse myth, so why the hell is Heimdall black and one of Thor's warriors Asian? (Yes, I am vaguely aware of that stupid 'law' that seems to dictate that all earthly races must be represented in big name films these days. Tuvok made me spit.) By making Vanaheim the home of Hogun's people (hence Asian), the makers have at least attempted to give a logical reason for his presence. In context, anyway. Presumably one of the other Nine Realms is the home of Heimdall's people. I can live with that. In context.
The acting was generally good (especially Tom Hiddlestone's Loki. How anyone can look so vulnerable and evil at the same time is a marvel...) and the cgi gorgeous. Now looking forward to the next one.
I've read More Than Meets The Eye 3 and 4 (little by little when the words stopped moving around the page) over the last few days, and I really have to quote a bit. The backstory is that the war between the Autobots and the Decepticons is over, and while most Cybertronians are working on rebuilding their devastated world, Rodimus has assembled a group of transformers (misfits, oddballs and nutcases, essentially!) to travel on the Lost Light to find the ancient Knights of Cybertron. The graphic novels tell the stories of their adventures along the way, and are great fun (as well as being heart-wrenchingly sad in places. The characterisation in these books is the best I've ever seen in the Transformers multiverse and the writing truly excellent.) Ultra Magnus is a member of the crew. I like Ultra Magnus, despite his being absolutely 'by the book' (the book in the MTMTE case being the multi-thousand page Autobot Code)...
I love that 'misplaced apostrophes'!
A little further on (whispered conversation):
I love these books. I really hope they eventually become a TV series.
That's about me for now - I need have something to eat, stick the tablets under my upper lip and go lie on sofa with Tf:Animated for half an hour I think...
Wednesday, February 26, 2014
Ken here. Joules is currently stuck in bed with BPPV (google it), which came on suddenly yesterday mid-day: can't even sit up without the room spinning, and can't eat for nausea. Has meds from dr. to minimise symptoms, but don't know when it will go away.
She says many thanks for cards and wishes, and will celebrate b-day properly when better. Hopefully just a few days.
Lutra, please let Clicha on tumblr know and ask her to re-blog Starmun's apologies to r.p. partners.
Sunday, February 23, 2014
And first thing this morning there were six large clumps of frogspawn in Roeg's Pool.
They were at it again ten minutes ago. I nipped out to take a look and there are another two clumps. [sigh] We have four pools in the garden - Kai's woodland pool is twice the size of Roeg's and would be much more suitable, but for some reason it's always Roeg's...
Ah well. The garden's big enough to support quite a large frog population.
Later edit: So I'm about to close down after clearing up a few bits and pieces and I suddenly realise there is an absolute cacophony of croaks and brrrrrrruPHS coming from the pools in the garden. I mean, it's been... January: rain, wind, more rain, foxes, wind, rain, quiet... February: wind, rain, more rain, foxes, rain, rain SUDDENLY FROG-BONKING SEASON!!
We'll be OK as long as there isn't a sudden cold snap.
We like frogs. They eat bugs and are very pretty.
GoodTwin and Sue came to visit, and I had an early birthday...
*bg* Of course I have to open my presents, so they can see my reactions. Which were absolutely delighted: I have a Transformers mug with the Decepticon brand on one hemisphere and the Autobot one on the other; MTMTE volumes 3, 4 and 5; and Erik the Viking!! I love this film! And this has the director's son's cut as well as the theatrical one (there's a booklet in the case that explains the difference which I will check out tomorrow).
GoodTwin drove us out to Almondsbury garden centre, where we had lunch and I picked up three small irises (blue and purple, very pretty), four different dianthuses and a couple of winter flowering heathers, as well as some indoor potting compost and a handful of packets of seeds - sweetcorn, cucumber and tomato.
Sue had brought her Agatha Christie and Trivial Pursuit games with her... I was a complete fail at both, though in my defence the first was heavily reliant on names and dates, neither of which I'm very good with, and in the second one I got some very tricky questions. Sue won both games - her questions in the second game were mostly really easy! They were great fun though, and highly amusing in places. Especially when we were trying to remember Robert Carlisle's name...
Thank you both - I had a fantastic day! Definitely tired now though - hoping for an earlyish bed.
Friday, February 21, 2014
Later edit: Please spread the word.
So this morning I get an email from amazon UK telling me my £2 mp3 credit is due to expire at the end of Feb... To be honest, I didn't know I had any, although I have bought a few mp3 tracks this last year. Anyway, rather than let it go to waste I treated myself to the Broken Iris mp3 album The Eyes of Tomorrow. I raved about the track Where Butterflies Never Die a while back, and it still gets added to every playlist I make.
Listened to it over the last hour.
I mean, WOW.
It's beautiful. 15 tracks and there isn't one on there that I don't love. That's never happened before. There are shades of Pink Floyd, Dream Theater, Muse, but none of them overpowering. Big, rich, complex sounds and wonderful lyrics. Why aren't they better known!?
It may well be the best £5.49 I've ever spent. Their website's a mess though. I'm itching to get in there and sort it out for them.
Lin sent me this -
Certainly the best I've ever seen. Though her comment made me laugh too...
I am of an age to remember using the Wang computer, and oh my the Chinglish involved in that! "To adjust heaties and coolies, please control yourself at no bigger than eighty degrees Fahrenheit" has engraved itself onto my cerebellum for ease of recall.
*snerk* 'Heaties and coolies'. I love that. (We won't mention the Wang computer...)
Thursday, February 20, 2014
Nice quick appt today: Kai's RBC was 74 and his platelets 17 (he has transfusions when they hit 70 and 10 (or below) respectively).
Did Tesco shop when we got home, then we both flopped and watched Avatar. Been a while since we've seen it and we thoroughly enjoyed it. Bit annoyed to find out the sequel won't be out til 2016 though (and films 3 and 4 in 2017 and 2018).
I'm now so tired everything's gone fuzzy. Having a lie in tomorrow.
A shelf of Strarscreams. This isn't quite all of them: Prime is with the rest of his compatriots on the shelf above, while Cybertron, Machine Wars, Armada and Hearts of Steel are still down on my desk (and I have the new Armada 'scream on order from BBTS end March). This pic is clickable to a much larger one: see how many you recognise!
Tuesday, February 18, 2014
Saturday Ken sank five big rocks to make new steps from the patio up to the meadow. It's a tiny slope but with the atrocious weather it's been muddy and treacherous: it's now nice and safe. I use it at least three times a day to fill the bird feeders.
Sunday we repotted Rosa, fed Feather, and watched Young Einstein. It's even funnier than I remembered (I missed the time travel gags before) - thoroughly enjoyed it.
Monday appointment was long. Kai needed platelets, and they decided to go with washed ones - except there weren't any ready and he really couldn't face waiting five hours in the day unit while they were prepared. So we got a taxi back (wince) and he slept on the sofa until it was time to go back. On the plus side, they've prescribed him a half dose of hydrocortisone when he has washed platelets (and put in an order for them to be ready when we go next Monday) and it all went very well (apparently he's been feeling strange with the normal platelets, but didn't know whether it was real or fear of the reaction, so didn't mention it). So it'll be washed platelets from now on. It's a compromise, but it works.
Also heard that we will get the funding for the London consultation, so I can go ahead and order the train tickets.
Today I've cleaned the kitchen (and we have the husband of one of my APAG friends coming round to fix the drip tonight: he's a builder, did their kitchen himself I think): cleared my client stuff, answered emails, and tidied my Starscream shelf. I have actually cleared everything I had left to do, until more comes in, so I can happily carry on watching Transformers: Animated with a clear conscience. (Season three is out in June so I thought I'd watch the rest in advance.) Which reminds me - my latest find:
Leader class Animated Megatron. On ebay. Complete. And he talks (well, he would if I could find where to put the batteries!) and his mouth moves. I am dead chuffed! He's over £60 new: I got him for £16 + p&p.
And to end - the lilies are amazing. As they die they go translucent, like fine embroidered linen. Wonderful flowers.
Saturday, February 15, 2014
Behind again. Thursday was a quick appt, and when we got home I did a double shop to save having to do too much this weekend.
Yesterday my new jacket arrived from Oxendales (and about time too, my old - 25 year old - fleece is now so threadbare the wind goes straight through it, and it was never rainproof...), so I borrowed Ken's bus season ticket, ventured out in the atrocious rain and wind, and went in search of crickets. Discovered a new place - The Reptile Emporium - that I can get to more easily than Almondsbury Garden Centre (bus into Westbury-on-Trym then another bus two stops up a very steep hill), and they also keep frozen rats, so at a pinch I have an alternative supplier for food for the non-four-legged beastlies. Nice place and very nice people, unlike the boss at the Reptile Zone. Used the trip to pick up buckwheat flour, Vitam-R and organic gravy powder at Phil's and Wild Oats as well. (And the jacket is brilliant - warm, dry and comfortable. Very pleased with it. Now let's see how long I can make it last!)
After dinner we watched Second Sight Detective Agency, which is supposed to be for my birthday but we all needed a laugh. It's funny - not brilliant, but the idea is fun, and the execution nicely done. I also recently found the DVD of Young Einstein, a film that never fails to make me laugh, which is also supposed to be for my birthday and which we will probably watch tonight. (I'm actually doing quite well with my goal of replacing all our old videos with DVDs.)
In a little while, when Ken reaches a natural break, we're going to repot Rosa...
Wednesday, February 12, 2014
On the landing...
... in the lounge...
... on my desk. Gorgeous.
For non-UK readers who don't watch international news, THIS is what the country is currently enduring. Current thinking is it's going to last for months more: more storms are on the way and there is simply nowhere for the water to go. The aquifers are full to bursting and the ground is completely saturated.
Having an early night - I feel dreadful, haven't been able to eat anything today, can't get warm, and everything hurts. Probably just stress.
Monday, February 10, 2014
9 am appointment - and the doctor decided Kai needed blood as well as platelets (usually - if I can say such a thing - it would be Thursday before he needed any). So not exactly the happiest start to the day. At least we didn't have to wait too long for the blood, but it was still a much longer day than we'd anticipated. And they gave him hydrocortisone before the platelets too, though we're expecting a decision about the washed platelets later in the week.
Arrived back to a HUGE bouquet of flowers from GoodTwin and Adrian, as a cheer-up present. They are absolutely beautiful...
Tomorrow I shall look out some vases and split them up. We can have flowers all over the house, which will be lovely. The fragrance is gorgeous too. Thank you.
I've spent so much of my life feeling helpless, but this...
Thursday I had to sign a form declaring that I was Kai's mum/carer/guardian for the application for funding for the London appointment in March. The nurse who gave it to me then had to nip off for a moment to deal with someone else, so I flipped the page and read the consultant's report.
It said the treatment isn't working.
I daren't cry. If I start, I won't be able to stop.
Ignore me. I'll be strong again tomorrow.
Sunday, February 09, 2014
Friday was mostly shopping and various online stuff in the evening.
Yesterday was the Sunday shop, early, general cleaning, and Taken 2, which was fun but not quite as compelling as the first one.
Today has been more cleaning, and I've got some seeds started - early peas and spinach outside, tomatoes, cucumbers, cauliflowers and sweet peppers on the kitchen windowshelf. Satisfying but tiring weekend.
Thursday, February 06, 2014
Another very quick checking in. Kai had a reaction to today's platelets: went through the same procedure as before and is OK, but it made the visit very long. And they're talking about giving him hydrocortisone before every platelet transfusion, which means once a week. I've expressed my misgivings, and the doctor was going to speak to the consultant (which is s good thing, as she wasn't at all keen on Kai having regular steroids at his age): we may be moving to 'washed' platelets...
After dinner Ken and I watched the last hour and twenty mins of Farishtay. All I missed at the end was a fairly obvious finale and explosions on a Michael Bay scale (so I didn't miss much then). Overall it was lots of fun and Kai's made me a great copy of my favourite song - Bhai Behan Ka Pyaar (this isn't a clip from the film, unfortunately, but it's a wonderful high quality version of the song, so play it while looking at other things...)
Monday, February 03, 2014
Checking in quickly.
Today's appointment was quick - blood test, review and line care - and we were home by 10.30. It does look, however, that the London appointment is going to be a thing in March. More on that later.
This evening I watched the first hour of Farishtay (a Yule present), which I saw part of on TV back when we were living in the Totterdown flat: I set the tape going to record it but the film itself is about three and a half hours long and the tape ran out - so I've never known the ending. Oh wow, the music!! *g* It's wondrous. Hoping to watch a bit more tomorrow (it's too long to watch the whole thing in one evening).
Sue, will get back to you soon. With all the appointments and delays over the last seven days I'm all behind...
Saturday, February 01, 2014
Right - where did we get to?
So I took advantage of the looong day yesterday to make a start on the Freda Warrington Blood trilogy while at the hospital. Actually got to page 361 of the 512 page A Taste of Blood Wine. I read it a very long time ago and the only thing I remember about it is the Crystal Ring, and that because I found the idea absolutely irresistible. Anyway - I'm enjoying it a lot.
Today was both Tesco and Sains shopping, then the start of my marathon cleaning of the kitchen. After dinner we watched Ghost in the Shell, which DVD I found for £1.50 in a charity shop and which haven't seen since just before Kai was born, and which we all enjoyed. My favourite kind of anime - classic, old school, thought-provoking and intelligent. There was a follow-up - Ghost in the Shell 2: Innocence - which I didn't know about and found on amazon for 9p plus £1.26 p&p, so that's now its way to us too.
After spending much of last night exhausted and lying on the sofa watching Mission to Mars and John Carter, today Kai's been feeling a lot better, and has been getting on with projects. (And I probably forgot to say but on Thursday we got another letter from Kings College Hospital with a revised appointment for mid March. I handed the matter over to Dr Lowry to sort out, though I'm perfectly happy to contact them again if need be.)
Still tired. I can't seem to catch up on my sleep. Persistently aching legs don't help, mind you...
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!