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.
Wednesday, April 16, 2014
Fun day yesterday! Wendy visited as planned, and I had a great time just relaxing and chatting. [GLOMPS!] Thanks, it was a lovely day.
Today the weather is glorious again. Planning to visit the Callington Rd reserve with Kai after lunch: this time I'll take my camera and get some photos.
Monday, April 14, 2014
Saturday the weather wasn't all that great, so we had a wonderfully indulgent family film fest: The Hobbit: the Desolation of Smaug after lunch, and then Rise of the Guardians after dinner. This latter is absolutely gorgeous and I think everyone should see it!
Sunday the weather was amazing. Ken and I did the Sainsbury shop, then later a Tesco shop, and in between we got quite a bit done in the garden. Kai helped me plant seeds in peat pots while Ken first mowed, then hoed on the slope (I want to plant Flanders poppies there a bit later in the week).
As you can see, my pear tree is full of blossom this year. As long as the weather stays fair I may actually get some fruit!
Today, yet again, the platelets weren't ready, so to avoid sitting at the day unit for six hours with nothing to do we came back (weeded the front, then I did some cleaning and got dinner ready while Kai booted up and got a few things done) and went in again later. It's costing a bloody fortune in taxis, but the Registrar has promised me they'll be ready next Monday and then I just need to remember to remind them every Thursday that they'll be needed after the weekend...
Kai's feeling a bit rough tonight, side effects of the piriton and hydro-cortisone. Fingers crossed he feels better in the morning. Wendy's coming to visit for the day.
Friday, April 11, 2014
News in brief.
I can't remember what happened on Wednesday. It's completely gone.
Thursday was blood transfusion (it's been two and a half weeks - longest yet), and thanks to the cross match I'd asked for on Tuesday it was ready for us, so no waiting and we were able to come home fairly quickly. I did find out a little more about my role as donor though: four days before I get injected with something that will increase my white blood cell count, then they harvest them through a process a little like dialysis - blood is taken from one arm, spun through a machine to remove the vital ingredients, then returned into the other arm. Although, since they had such trouble finding viable veins in my arms, it's more likely I'll have to have a catheter instead of a canula, in my neck or groin. Have to admit neither sounds appealing... Takes two days, with an overnight stay. Could be worse.
Spent a little time in the garden when we got back, as the weather was so good.
Today Kai and I went over to the Callington Rd Nature reserve again, and explored a little more. There are paths everywhere, and next time we're going to follow the longest one that I think leads back to the Talbot Rd allotments. It was great fun, and Kai thoroughly enjoyed himself (although his legs and the soles of his feet are a bit sore now, it was the furthest he's walked since last August. But he still has plenty of energy, which is wonderful.) On the way back he came into Tesco with me to pick up the shopping (it was very quiet with hardly anyone there so we thought we'd risk it). Nice to get back to something vaguely resembling normality.
But first thing this morning I went to pick up my latest Starscream from the delivery collection (there was VAT to pay) - Generations Armada SS. He's gorgeous.
Easy day tomorrow - planning a little gardening (planting seeds) and watching Desolation of Smaug, which I bought as soon as it came out.
Tuesday, April 08, 2014
OK, so, appointment in brief.
Kai likes Professor Marks (he sounds Australian) and I was impressed by his forthright attitude. He went through all the pros and cons of the options for treatment, giving us more of an idea of the odds than the book could. What happens next is we're going to wait til June to see if Kai does have a late response to the ATG. If he does and it's worked, all well and good. If it's only a tiny half-hearted response, they think another course of ATG will be the best option (that will mean another year's deferral of his Uni course, assuming they will. I haven't contacted them yet, wanted to wait until after this appointment).
If there's no improvement, he recommends a bone marrow transplant - a haploid-identical one, with me as the donor. Which explains why they wanted my blood yesterday - five vials of it. (No problem, except my veins did not want to cooperate, and I've ended up with six puncture wounds (three inside both elbows, one on the side of my hand, one on the back of my hand and one on the inside of my forearm which hurt like hell) going a pretty assortment of colours today. I just hope they managed to get enough; four of the vials were barely half full and the last one had hardly anything in it... The nurse who tried to take the blood decided I must be an alien of some sort.)
Obviously the first option is by far the best, but we need to see the numbers improving much faster than they have been. More as it happens.
Labels: medical matters
Sunday, April 06, 2014
Kim didn't have room for this little tree in her garden, so I've given it a home. Not entirely sure what it is - maybe a willow? - but it's very elegant and pretty. I've planted Oriental Pixie and Stargazer lilies around the bottom, should look pretty in the summer.
We finally had the results back from King's College Hospital: pretty much as they said while we were there. The biopsy has come back confirming aplastic anaemia (with a host of details I'll have to look up to understand). The report was peppered with phrases like "exceptionally fit young man" and "remarkably few side effects", which I suppose puts him in the best position to work with whatever treatment they schedule next. Another dose of ATG only has a 30 to 40 per cent chance of working, and they still haven't found a good donor match. We have an appointment with the Bristol transplant specialist on Tuesday, to discuss where we go next.
Friday, April 04, 2014
Thursday's blood review was OK, nothing needed, so we were able to come home fairly quickly. Then we spent the afternoon setting up my new laptop (which Ken decreed I must have and which was paid for by the cash I got for doing the initial things for the thing that might become a thing). Found a nice little Lenovo on amazon for £299.97 (over £50 off in the sale: price has gone up again, I notice!) and since all the reviews sounded positive (I always google for item problems before forking out any substantial amount of cash) I bought it. It's called Prowl (after this one) and is rather nice - though I absolutely hate the touchpad pointer and will be buying a thumbball mouse to use with it. Or maybe a cheap tablet.
Anyway, it's set up now (except for Thunderbird, which is refusing to recognise the Wavewrights server to send messages, though it will receive them, and I don't know why...) I've copied across all my current wips and will be able to work when Kai has a long day at the hospital. Not online unless I borrow his wifi login, but I should be OK without that until I get home anyway.
Kai was of immeasurable help, and recommended Ninite, an absolutely fantastic bit of kit that will install all your usual apps in just one click. You just check the ones you want, hit [get installer], follow the incredibly simple instructions, and it does all the work for you. Brilliant, just brilliant.
The laptop comes with its own Lenovo troubleshooter, and since it was indicating a couple of issues I took a look. One was for launching a couple of backup options, one was to register the machine, and the other made us laugh...
Am aiming to get moving on nextPoppy this evening (after Marvel, Agents of SHIELD). I've reread everything and think I'm pretty much ready...
Wednesday, April 02, 2014
[bemused...] It's been an odd and interesting day. When I woke and looked out of the hall window, as I usually do, I saw our blackbird in Roeg's pool. Yes, in. Standing on the pondweed, of which we have far too much, actually bathing itself. I think it's been fishing for tadpoles too: the pool is heaving with them. After it had gone, a couple of sparrows got in and did the same...
Then while I was upstairs getting ready to go out (PO and Sains) Kai called from the bottom of the stairs, "Feather's got out..."
I've never got down the stairs so fast. I leave the front glass doors open a little for ventilation, and the sneaky snek had pushed them both to one side, leaving enough of a gap for her to almost get through. She was balanced along the lip of the vivarium, with the fattest part of her tail still inside. So I caught her, Kai unlocked the doors so I could free her, and she cuddled into me for half an hour while we let her viv air out a bit. Very calm and relaxed she was, which was a bit of a surprise as - shame on me - she hasn't been handled for several months (I just haven't had the time). Cleaned out the droppings after putting her back in, but we really need to clean her out properly this weekend, and change the aspen substrate.
Wish I'd had time to take a photo!
Interestingly, Ken dreamed last night that she'd got out and was trying to eat Tyjer in the kitchen...
Tuesday, April 01, 2014
I can't keep up. What day are we? Ah yes. Tuesday.
Sunday the weather was great, so we did some stuff in the garden. Kai sat on the bench and enjoyed the sun: I made a little stone 'wall' around the asparagus bed using thin stones and pieces of slate (looks much better than the tatty old green plastic edging) and Ken mowed.
Kai had platelets yesterday, so the appt wasn't quite as quick as we were hoping. But we still got back reasonably fast, and all watched my new RG Veda DVD (a Clamp Studios classic, very pretty, if very confusing as the anime takes a couple of later episodes, starting and ending in the middle of the story. Lovely to have it though - I can get rid of the video now). After dinner Ken and I watched the last ep of Space Rangers so I could finish writing and posting the IMDb ep summaries. Finished now, and all accepted. (Next we move onto Star Maidens next, those IMDb ep plots are empty too!)
Today I had to get back to the hospital as we were almost out of itraconasole (I should have ordered it last week but it slipped my mind, and the pharmacy are always very busy on a Monday, and wouldn't have had it ready for hours yesterday). Took advantage to stock up on bird food and buy a decent digital thermometer, a Braun one from Boots (the Lloyds one is a complete fail and I'm taking it back to complain tomorrow). Hoping to watch Forbidden Planet after dinner.
I am really tired of this blasted vertigo. Over a month now and it's not getting any better. And my legs are constantly aching: I have to keep making tiny muscular adjustments when walking to stay upright and while I'm sure it's probably doing my leg muscles a lot of good, it hurts...
Saturday, March 29, 2014
Been a busy couple of days. Yesterday was shopping and making a large amount of sweet pepper and canellini bean soup for freezing (Kai likes it and it's useful for him to have a small bowl for supper to have with his meds), and reading through the last few Poppy chapters. (It'll be at least three weeks before I hear if the the thing that might be a thing has become a genuine thing, and Ken suggested I get back into writing Poppy...) Today the weather was lovely, so Kai and I walked over to the little nature reserve at Callington Rd (for Kai to get some sun and fresh air and a little exercise, and for me to dive into Tesco on the way back). First time I've been in it - it's really nice, and apparently has roe deer as well as foxes - and this weekend there's a special installation at the pond:
The thing in the middle is a fountain, that whizzes round and sprays water in spiral streams - really pretty but impossible for me to photograph with my camera.
There's also a very handsome feral cat:
While dinner was cooking we all watched Things to Come, and all enjoyed it.
Found out something surprising last time we saw the consultant: it seems that the worse sources of fungal infections (which Kai is at risk of) are building work, ducts (we immediately hammered his airbrick closed), cut flowers - and pepper (cooked in the dish is fine, it's just sprinkled on after that could be problematic). Going to have to enjoy my daphnes in the garden rather than at my desk this summer...
Thursday, March 27, 2014
Quick catch up. Kai feeling much better, but had platelets today. All the tests came back negative for any infections or nasties, so what caused it we just don't know...
Labels: medical matters
Tuesday, March 25, 2014
Later edit: Kai home, but it was a long day. No platelets needed, but his magnesium level was low so he had a transfusion of that (over two hours). I have a list of high magnesium foods for the diet, but it's all stuff we already eat (wholewheat bread, sardines, peas, spinach, chocolate *g*) so I think his levels were low because he was in hospital and eating hospital food... That's my theory anyway.
After dinner watched Riddick, which was too similar to the first film (Pitch Black) to be truly good, but it was enjoyable anyway. I love how these films make alien planets convincing (well, pretty at least!).
Tired again. Will answer emails tomorrow.
[grump] Since I'm too knackered by the end of the day to post (at the moment, anyway) I'd better do it now before the day really starts...
Where was I? Oh yes, Saturday.
Sunday was very busy. Cleaned the bathroom thoroughly (and all the taps in the house by steeping them in vinegar - kills everything and removes limescale, though it's a little tricky upstairs: have to wrap vinegar-soaked cotton-wool around them and pushed up into the tap itself) then did the usual Sunday shop before heading into the hospital. Kai was looking and feeling a great deal better. Stayed a couple of hours then came back via Tesco and bought some new bedding (and a new duvet for Kai as his was old and not the most hygienic of things, even though we wash them all regularly) in their sale. THEN I worked on the last bit of the thing that might become a thing and sent it all off ready for Monday. (The recipient is pleased with it all.)
Rang to ask what time he was being discharged, only to be told his temperature spiked on Sunday night and they were keeping him in an extra night for observation. Went in for a couple of hours in the afternoon - he was fed up, had been looking forward to coming home, and apparently the 'grumbling temperature' had been 37.8°, which is actually not that unusual for him - then came back, only for Kai to skype me that they wanted to give him more platelets, even though he'd only had some on Friday. (We're both happier if I'm present when he has them, as I can keep a close eye on any reactions and help distract him, though we have now been told that a slight feeling of a reaction about to happen is quite common, which is reassuring, but last night I was just too tired to go back in.) So we stayed skyping, and the time kept getting later and later, and eventually they decided that under the circumstances they'd wait until today to see if they would give them to him - after I arrive. So I'm heading off later, and hopefully will be returning shortly thereafter with Kai. Hopefully.
Saturday, March 22, 2014
Very very quick update as I can't keep my eyes open and am going to go to bed imminently. Kai is much better, but they're keeping him in 'til Monday.
Friday, March 21, 2014
Woke early, got the last thing done for the thing and emailed off (the person who requested it is quite pleased with it I think) then dived out to the PO. Got back, and after lunch Kai said he wanted to flop with a film as he wasn't feeling so great. Since this happens frequently I just kept an eye on him while he watched Voyage of the Dawn Treader, then we started Cyber City Oedo 808, but half an hour in he said he was feeling worse and it was quickly getting worse...
Cue a speedy trip into hospital in an ambulance, powerful antibios through his PICC line, fluids, and bloods. He started improving slowly after the antibios started going through, but they're keeping him in for a few days: the antibios have to be given four times a day.
I came home to get his provisions (chief of which, of course, is the laptop - his login and password still work so we can skype) and make fajitas for him, then got a taxi back. He was much improved, so much that I felt happier about coming home tonight (the gorgeous new, en suite rooms on the ward don't have any fold out beds or have room for them, or even adjustable chairs, so staying overnight would be difficult). I'll head back early tomorrow am, and see what's what then.
The lovely paramedics with the ambulance (both female) called it 'an acute flare-up of a chronic condition', and apparently it does happen occasionally. I'm just depressed it happened to Kai.
When the test results come back - hopefully tomorrow - I'll be able to ask if there's anything we can do to stop it happening again.
Labels: medical matters
Thursday, March 20, 2014
Nice quick appt today. Kai's RBC count is 71, which is borderline but he feels OK and we don't have anything energetic planned for the weekend, so dr was OK with him waiting until Monday.
We were home by 10.40! Ye gods... So I went to the PO via the charity shops - been sorting stuff out - and then down to Sainsbury's. Restocked freezer again. This afternoon has been more work on the thing that may become a thing: should be able to send this batch off first thing.
Forgot to say (I think): I also picked up The World's End earlier this week, and we thoroughly enjoyed it. It took a while to grip, but once it had... Pegg and Frost are simply brilliant.
Tuesday, March 18, 2014
[sigh] Monday was one of those days. We got to the appt in plenty of time, as usual, and then had to wait an hour. (It's the new unit. It's wonderful and spacious and comfortable and a nice place to be if you have to be in hospital, but they haven't got all the kinks ironed out yet, and I rather suspect they don't have enough staff to make the proper use of it. It has far more treatment chairs than the old place.) Anyway, we eventually got seen, and Kai had his usual blood taken for review, and the doctor came back to say he'd need platelets and blood, as his RBC was at 62 and his platelets at 2! Which is insane. He only had blood last Monday, and is feeling fine still. But the nurse said he'd not been sure so had put the sample through twice...
So we couldn't really argue, although neither of us was convinced.
And then the doctor forgot to ring to order the blood and platelets (the washed platelets were ready but needed to be collected), so there was another delay - but that actually was fortuitous, as we saw the consultant in the meantime (she wanted to hear what had happened in London) and we both mentioned we weren't happy, so she asked if they'd take another vial and test again. And that one came back with a 75 count, which is fine (he only has blood at 70 and below) so the blood transfusion was cancelled. (He shouldn't need any until next Monday.) I suspect they may be having problems with the machine that does the tests...
He's still nervous about the platelets though, after having those reactions, so we talked. Maths, language, linguistics, and how to create a universal translator. It certainly distracted him, and reminded me how much I used to enjoy linguistics (studied it as a year's course as part of my degree), and now I'm thinking if I can make the time I'd like to get back into it. Going to check if anything is available online.
Dived over to Tesco when we got back and picked up Catching Fire, which Kai had expressed a wish to see (bought the first one a while back). It's good, but it ends on a cliff-hanger, and the next one isn't in cinemas 'til October.
Today has been one of client stuff, repotting some of my indoor plants, and generally keeping things under control. We may watch another film tonight - the sf classics have all arrived now.
Sunday, March 16, 2014
Well that was hectic...
But fun. Ken and I went to Clevedon yesterday, for my belated birthday celebration. Had lunch at the Little Harp inn right on the seafront - most excellent. The place is lovely, the staff great, and the food was terrific. Had deep-fried breaded garlic mushrooms with mayo, and then Suffolk-farmed pork sausages and mature Cheddar mash with sautéed red onion gravy (from the set menu, and I was wicked and had a warm chocolate fudge cake with ice-cream - delicious! (And very rich and very filling, all of it...) Most enjoyable, and we will go back.
We stopped off in the town to check out the charity shops, then hopped off at the Golden Acres garden centre in Tickenham. A bit disappointing this time, although it is still very early in the year. Bought three new dianthus, a white primrose, a fuzzy white succulent and an interesting plant with calla shaped leaves and very odd black flowers - both of whose names I forget, will have to get them tomorrow.
Today it was literally vest top and shorts weather, and I potted on my cucumbers, early tomatoes and a handful of peppers in the greenhouse (they're cloched, it's not that warm out there yet!) Ken hoed the veg bed for me, and we planted the dianthuses. I got some client stuff and thing stuff done too. Overall, very busy but very productive.
Thursday, March 13, 2014
Sorry for the dearth of posts but on top of everything else, last Friday I was asked to write a thing (that might become a thing, but as you know I don't talk about the thing until it's a confirmed thing just in case I jinx it...) for today, but since I wasn't going to be here much this week I had to do it on Friday/Sat/Sun, which meant working flat out while trying to keep everything else under control as well. Oh joy. Managed it though...
So - Kai's birthday. It was quiet and laid back: we had steak for dinner and then watched Gravity, which we gave him as a present. Post-film was fun as he analysed everything that was physically wrong with it (and there were lots!)
Monday's hospital appt was loooong - washed platelets then two units of blood as normal. I nipped out and did a little shopping in Broadmead while he was sleeping through the transfusion. But the day unit is now in its lovely new building, and is airy and spacious and all windows, actually very pleasant indeed. It'll make spending time there a lot nicer.
Tuesday... The run up to London was great: I'd reserved seats in a 'quiet' carriage and there were hardly any other people (thus less risk of infection), so it was lovely and peaceful. Unfortunately, as our taxi driver told us, there'd been some kind of 'incident' on one of the main roads (which had been closed) in the centre, and the traffic was horrendous. Took us over half an hour to get from Paddington to Denmark Hill (*wince* and cost £33. But we should get that back. I hope) - we stayed in one of the suites here (and no, I shall never live it down): it's literally around the corner from King's College Hospital and accommodation is free for patients, if they have room, which they did (a very nice suite, double bedroom for Kai, separate bathroom and a spacious kitchen/lounge where I set up the camp bed provided and proceeded to have one of the most uncomfortable nights of my life - oh my back!). Unfortunately it was on the third floor, so Kai had to take the stairs very slowly, but he only had to go up them twice so he managed.
We booked in, dumped the bags, then headed off to the London Eye. Grandparents gave us some cash so Kai could do something fun while we were there and we both thought that would be fun.
And it was!. Only had to queue for tickets for about five minutes, then another two to get on it, there were only about 10 people ushered into each capsule - not at all crowded, enough that Kai could keep his distance. Then a wonderful leisurely thirty minutes turning a slow circle in the sky... Wonderful. We both felt great afterwards.
And on to Wednesday and the actual appointment...
It went well. We saw both specialists - Austin and Judith Marsh. They are generally pleased that so far Kai has had few problems with the meds and side-effects, and pushed for a bone marrow transplant as the best option at this stage, stressing how much success they have with them. But they admitted they didn't have a good match (I think they said only a 70% match, whereas a good one is 90 - 100%) and after reading that terrifying book about the subject that Polly gave us, both of us have to consider transplant as a last resort (unless a good match is found). There's still a possibility that the original ATG (which came from horses) could kick in, especially as his WBC and neutrophils have increased since he had the chemo (very slowly and only a little but that's still positive, neutrophils up from .05 to .24, and we didn't know it until now but it is those two elements that show progress before the RBC and platelets). In some people it's kicked in at nine months, so there is still hope, but we have to start on a plan B anyway. Kai wants to go for the other ATG, which comes from rabbits, and in a truly bizarre piece of synchronicity he dreamed, on Tuesday night, that he met a friendly giant talking rabbit... We can't really come to any decision until we get the more detailed results of the biopsy, in about three weeks time.
So that was all a little more reassuring and encouraging than before. What wasn't, however, was that our appts were at 10.30 to see the consultant and 11 am for the biopsy. Their letter said to allow a good two hours in case of delays, so I'd worked it out that the 3.30 train would be both less crowded and allow plenty of time for us to catch it. Even with the two hours we would be out by 2.30.
We were OVER THREE HOURS LATE being seen, and for all that time we had to sit in a packed waiting room with people coming and going, coughing and snuffling. I am not happy about it. And of course we missed the bloody train (could have made it had the taxi not been 10 minutes late), and I had to shell out an additional £84 to get us home on the 4 pm train, which was far busier and of course no reserved seats. We managed to find two in the quiet carriage with no-one facing us so hopefully everything will be OK, but I made my feelings known to Polly today at Kai's Thursday appt when I gave her the receipt. I just hope they cough up, as this was absolutely not our fault. Could really do without the stress...
Today has been very busy - usual Thursday appt, washing, shopping, loads of client stuff, then this evening we watched Ender's Game which is surprisingly good and, I'd say, may well be considered a classic in the future. Intriguing, thought-provoking and intelligent film, highly enjoyable.
And tomorrow I was planning a lie-in, but the radiator panels I ordered from amazon are being redelivered at some point so I have to be awake. Eh well. Maybe Saturday...
Wednesday, March 12, 2014
Quickie because knackered. London went OK - at least, we have a couple of options more than before: will do a proper blog post tomorrow with all the details (and his birthday, which I think he quite enjoyed despite not being able to do much). And a page of photos - we managed to go on the London Eye on Tuesday. But right now I'm exhausted and Kai is sore (having a ruddy great needle stabbed in your pelvic bone'll do that) and we're getting to bed as soon as he's had his evening meds.
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.