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...

Labels: busyness, days out, films, medical matters

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

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.

Labels: films, medical matters

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.

Labels: Kai

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

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.

Labels: films, medical matters

[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.

Labels: films, gardening, medical matters

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.

Labels: Clevedon, days out, garden centres, gardening

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...

Labels: busyness, films, medical matters

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.

Labels: medical matters, sheeeeeep

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.

Labels: birthdays

Brief catchup...

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...

Labels: gardening, Kood, musekicks, Transformers Animated

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.

Labels: films, friends, medical matters, strangeness and charm

Today...

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!

Labels: busyness, domesticity, medical matters