Up early, put wash through and sprayed the last of the grass out the front and the weeds coming in the rockery at the back, watched TfP: Beast Hunters ep then woke Kai up ready for the run to the BRI and his blood transfusion. Two units takes four hours to drip through, so I left him there while I went back to do the usual Sunday stuff.

Only two Bath buses in a row didn't turn up to the bus station, so I lost an hour. (I suppose I could have walked it but it was unseasonably hot today and my legs were already aching.) Got the shopping, made dinner and had a slice of pizza for lunch and then it was time to go back to the hospital...

Kai always looks and feels so much better after a transfusion. It's heartbreaking to see that slowly fade over the week. And now he has four different meds he needs to take, more or less evenly spaced out over the day, to whit:

1 x 1 time a day
1 x 2 times a day, Monday, Wednesday and Friday only:
2 x 2 times a day WITH FOOD
1 x 3 times a day.

Logistical nightmare. We're trying for a ten am start with breakfast and a ten pm supper for the ones that need to be taken with food, and the rest spaced out accordingly. (A dose of all of them with breakfast.) And these are the meds to stave off any infections: as far as I know they won't do anything else, though I'll google all the names tomorrow - too tired now.

Labels: busyness, Kai, medical matters

Off to Almondsbury Garden Centre this morning with Kim - we had a great time, I was able to pick up everything I went for (including the Midwinter Fire cornus for the front garden and the rat weaners for Feather) and it was just good to sit and chat. Gone three before we got back!

We watched Agents of SHIELD (the TV series sequel to Avengers Assemble) last night - great fun, really enjoyed it! Tonight it was the first ep of Atlantis, which was fun too. I can't see it becoming a gripping 'must watch', but it's a nice take on the myths.

Sue, thank you for the card.

Blood transfusion for Kai tomorrow. Can't come soon enough, he's looking pale and bruised around the eyes. I hate this, and there's nothing I can do to make it better.

Labels: Almondsbury Garden Centre, drama, Kai, TV

So, back into the Haematology Unit for cross-matching of blood before Kai's second blood transfusion. Consultant Lisa and specialist nurse Polly took us into a private room (reassuring us it was just for privacy and nothing scary) for a chat...

Upshot is, they've been trying to find the perfect bone marrow donor for Kai and so far haven't found one (though I understand they'll keep looking) so, since his white blood count is going down and we therefore have to assume he's very unlikely to get better on his own, in a couple of weeks he'll be going in for the immuno-suppression treatment, which will involve him staying in for a week while they administer the meds intravenously and remaining in for at least another week - and probably more like a month - while he gets over it.

This will cure the condition in two-thirds of cases, and he can still have a bone marrow transplant afterwards if need be. If it doesn't work, they try again. Consultant James is still very reassuring about the whole thing.

We're still waiting for the final results, to confirm it's not congenital and it is aplastic anaemia and not the other version which has a different name and needs slightly different treatment.

He goes in again on Sunday for a second blood transfusion (which he's looking forward to as the last one made him feel better but didn't last long and now he's exhausted all the time again). At the same time they'll do the usual checks so we don't have to go back in again on Monday, and give us the anti-bios he needs to take from now on (different ones than before, these will protect against some nasties that live in the environment and that people with normal immune systems can carry without being aware of it, that can cause serious infections. They seem to be particularly worried about chest infections.)

Ever felt like you're stuck in a nightmare and just want to wake up but can't? Yeah.

However, our own doctor, who is keeping tabs on things, has said he can go there for his weekly blood tests, which will mean a £1.80 return ticket on the bus (which is nearly always almost empty) instead of the £10+ each way taxi fare to the BRI, and a much less stressful (and shorter) trip. They may even be prepared to come to us for his bloods if we ask, but I think, as long as we're careful and he wears the mask he's been given for emergencies, getting out of the house even for just a little while to somewhere familiar will do him good. First one is next Wednesday.

On Friday of next week he goes back in for another bone marrow biopsy (from the other side) just to check how things stand - then the week after they'll finally decide when they're going to start the treatment.

Gleaning what little good we can from the whole bloody awful situation, his new laptop has arrived (and wow is it a beauty!) and they have wifi on the wards, so I'll be able to skype him from home - like we do now - and he will be able to stay in touch with his friends world-wide the same way. And Polly arranged for the Macmillan rep at the Citizen's Advice Bureau to ring me urgently for initial advice while Kai was having his usual tests, and on getting home we rang the DWP and got him 'signed up' for Employment Support Allowance (well, we will have when the forms arrive and are sent back, anyway) which will at least help a little with the financial situation. They'll ring me later to arrange an interview for me to get more info, although they were able to tell me that the new version of the Disability Living Allowance wouldn't come into effect for three months after the initial diagnosis and any carer's allowance is dependent on that. Frankly I don't think we stand a chance, after the fucking Tory butchering of the system. But we'll see.

I may be able to get the cost of the taxi fares back, though that's not definite.

So that's where we are. It's viciously unfair, but wishing it was me, not him, accomplishes nothing. But I tell you this, if I ever find out there is a (judeo-xian) god, I shall demand to see him, acknowledge him, then rip his balls off (man 'made in his image', remember?) and shove them so far down his throat he chokes on them before kicking the bastard into the next century.

Labels: angry, Kai, medical matters

Quick update. Spent a couple of hours at the hospital for Kai's checkup: he had another platelets transfusion and needs more blood, so we're back - again - tomorrow to cross-match his blood and then back again on Sunday for the transfusion. Taxis each way. Although we have now met the specialist nurse who is going to see if she can get us help with fares.

Still no confirmation of diagnosis.

I'm tired.

Labels: Kai, medical matters

[sigh] So I booted up this morning only to find an error message flash up in the middle of my screen.

Having no idea what it was, I googled, only to find it was a Skype thing. Then I noticed Skype had failed to start...

Oh joy. It was something to do with the latest Skype version not working with XP unless you had Service Pack 3 installed (which I didn't as there was an excellent chance it would stop my computer working completely, due to running AVG, I think. It was a looooong time ago). I had to uninstall Skype 6.7 and reinstall 6.6, not exactly a hard thing but annoying all the same.

Tyjer has ways of alerting me to the fact he wants feeding. If I'm in shorts, he walks under my chair, trailing his tail over the backs of my knees. Or he'll sit beside my chair mewing. And he does have a very irritating whiny, reproachful mew. If that doesn't work he'll go and batter at the cat flip door, then find a noisy toy and bat it all over the place. And if none of those work he'll sit here, so I can't see the TV.

Pest of a cat...

At the weekend I got an ebay alert to an item I'd forgotten I was watching - a Depth Charge figure, from Beast Wars season 2, a character I found fascinating. The starting price was £3.99, with £5 p&p (not too bad) and no bids, so I sat on the page for a couple of hours. Ten minutes before time someone put in a bid, then someone else, so I did my usual and at the very last minute put in a max bid of £10 (on the grounds that this figure was complete - they're usually lacking the tail - and complete figures usually go for around the £25 mark minimum). And rather to my surprise I got him (for £8).

He arrived this morning (actually a few minutes before the emailed notification of dispatch!), and is really quite magnificent, much larger than I was expecting and very show accurate (gorgeous metallic paint).

It's a pity his back kibble is so large (and here you see why having the tail is so important - he can't stand upright without it!) but I can live with it.

I'm really rather chuffed!

Less chuffed about the blasted sciatica. Honestly, I spent half of last week trying to sleep on a sofa bed very similar to this one, which when folded out was considerably narrower than your standard single bed and had the mattress covered in the noisiest plastic ever (no, I didn't even consider asking if I could take it off. Haematology Unit, minimising the risk of infections, etc.) and apart from hardly sleeping had no problems at all, except for slightly bruised calves where the edge of the seat cushion had pressed in while I was sprawled reading. Back in my own bed, and back doing the prescribed exercises, suddenly everything hurts again. [sigh].

Kai update. He's still very tired, and still a little pale, but he's so alert now! It's wonderful - even if it is on borrowed blood. He gave me a bit of a hand in the garden yesterday - nothing strenuous, just out for some fresh air and carrying cut bean plants and uprooted sweetcorn plants (they've now finished, the harvest wasn't great but I do have a large bag in the freezer, so it wasn't too bad) to the compost heap. I spent this morning making 30 beefburgers for the freezer - good healthy iron-rich organic food for his lunches for the next few weeks - and he ate three of them. His appetite has always been good though. We've just told him to help himself to whatever he fancies as often as he likes (not much change from normal there, then!) and I'll make sure he gets everything he needs in the fixed meals.

Wendy, many thanks for the card and the offer. I think we're OK though - we're pretty self-sufficient through necessity, here!

And thanks to GoodTwin. I appreciate it.

I've just kept myself busy today, around the house and writing the first of the spreads for the other author's book. Kai should have been registering at the Uni today, ready to dive into the next part of his life...

Labels: Kai, Transformers: Beast Wars, Tyjer

Later edit: The University got back to me and were very helpful. I'm to keep them advised as to developments, and they have reassured us that Kai will keep his place even if he has to take a year off and start next September - so that's one less thing to worry about.

Well, we're not much further forward: the results weren't back. He has to attend the Day Unit twice a week for check ups and probably another transfusion for the next three weeks, after which they'll decide on the treatment (I gather they wait the three weeks because if it is going to spontaneously cure itself it does so in that time). At the moment one of the consultants wants to go for a bone marrow transplant first, because it can be a little more tricky after the immuno-suppressing course of treatment, which is what one of the other consultants wants to try first...

For the moment, he's to finish the course of anti-bios he was given and get back to the hospital if his temperature goes above 38° or he feels ill (or has any other signs of infections or problems - chesty cough, vomiting, the usual sort of thing). At the moment he can live at home.

The Uni haven't got back to me, which is a little annoying: I'll phone them in a bit, after lunch. I'll have to ring their main number as I have no idea who I'm supposed to speak to. That was my main question in the email...

More later.

Labels: Kai, medical matters, university

Kai was allowed back home this afternoon, since his temperature and BP have been stable for 24 hours, but I'm to rush him back - at once - if he gets a temperature or starts feeling the least bit ill.

We still won't know for definite until Monday at the earliest, but all the signs point to aplastic anaemia. Sounds so mild, doesn't it? This is the wiki entry for it:

Aplastic anemia is a disease in which the bone marrow, and the blood stem cells that reside there, are damaged. This causes a deficiency of all three blood cell types (pancytopenia): red blood cells (anemia), white blood cells (leukopenia), and platelets (thrombocytopenia). Aplastic refers to inability of the stem cells to generate the mature blood cells.

It occurs most commonly in the teens and twenties, and also among the elderly. It can be caused by exposure to chemicals, drugs, radiation, infection, immune disease, and heredity; in about half the cases, the cause is unknown. [The last is the case with Kai]

The definitive diagnosis is by bone marrow biopsy; normal bone marrow has 30-70% blood stem cells, but in aplastic anemia, these cells are mostly gone and replaced by fat.

Aplastic anemia is treated with immunosuppressive drugs, typically either anti-lymphocyte globulin or anti-thymocyte globulin, combined with corticosteroids and cyclosporine, with a response rate of about 70%; this indicates that aplastic anemia has an auto-immune component.

It's very, very nasty and requires heavy duty meds: we've been told nausea and possible hair loss are just two of the side effects (nausea we can usually handle with diet with a lot of fresh ginger, and Kai isn't vain, he says he doesn't care about his hair as long as he can get rid of the condition as fast as possible...) It can recur. If the meds don't work (and they can take anything from several months to a year to clear it, I believe, though I'm not going to swear to that) the only option is a bone marrow transplant. The consultant haematologist we saw this morning (Steve R, who was absolutely lovely, was originally a mathematician and worked with computers back in the 80s until he opted for medicine) assured us the Avon Haematology Unit has a 100% success rate with such transplants (and he wasn't bs-ing either), which is reassuring.

Kai had a platelet transfusion, two blood transfusions, the biopsy (he opted for a sedative for it, which I think was wise: the site still hurts), a canula in each arm for the transfusions and for daily bloods, two days of intravenous antibiotics (tazocin I think it was) and is now on tablet antibiotics three times a day. He goes back to the Day Unit at 9.30 on Monday for his first check up and hopefully the definitive diagnosis, so we can find out how he's going to be treated: then we can start to plan how we're going to manage. I am hoping desperately we qualify for free hospital transport, as he's not to mix with people at the moment due to the risk of infection so buses are out, and Bristol taxis charge 20p per 30 seconds (cost us £15 to get the couple of miles home this afternoon). There's no way he can start Uni on Tuesday: I've emailed them with the basic details so they have a written record of the situation and will have to ring them to find their protocols for this sort of thing (another of the consultants has close links with the Uni and has promised to help if he can). More on that as it happens. The Uni really, really want him so I'm hoping that deferring his entry for a while won't be a problem. (How it's going to affect his grant and tuition fees I have no idea. One thing at a time...)

Kai's pov? He'll use the time he has to take off to keep up with the course (his books have mostly arrived now and he's started reading them already) with the view to being the top student in the class when he finally gets there. I'm just hoping the meds don't make him feel too ill to study (although I know he'll carry on even if he does feel ill, as he's already doing that). He is an absolute fragging marvel and is handling this a lot better than I am, bless him! The worst he's ever had before is a dose of flu.

The last option is that in a very small number of cases aplastic anaemia can simply go away as mysteriously and suddenly as it appears. Ken says we'll go with that option, then.

... I think the universe hates me and I don't know why.

Labels: Kai, medical matters

Despite several attempts, consultant couldn't get enough liquid bone marrow for testing. The solid samples won't be ready until Monday morning - they have to dissolve the calcium before the sample can be tested - so we won't know for definite until after the weekend.

Again, no comments or messages please. Just keep us in your thoughts and fingers crossed.

Labels: Kai, medical matters

Kai has been completely lacking in energy for a couple of weeks now, so this morning I took him up to the doctor's for a check up. She weighed him (he is underweight but not dangerously so) and took bloods, thinking he's anaemic...

An hour after getting home the surgery rang. They'd rushed his bloods, the count was low right across the board, and I had to get him into A&E as quickly as I could.

He'll be in overnight (I'm going back to stay with him), will be having a transfusion, and a bone marrow biopsy in the morning. Those results should be back by lunchtime (the initial results anyway) and then we'll know what's what.

No comments yet please - let me post the results first.

Labels: Kai, medical matters

...and suddenly, work. A little client stuff, and from agent a request to help another author who hasn't got enough time to complete her project within the deadline, so would I write some of the text? It's for a book on the afterlife, 30 or so bite-sized (320 word) spreads: topics are specified, I just need to write general descriptions of the subject. Quite straightforward and not too arduous, with deadlines of half by Oct 15th and the rest by the end of Oct.

Of course I said yes. Payment is by the word, and will certainly come in handy!

Labels: books, client sites

An irritatingly bitty day with lots of little things done but nothing of any note accomplished.

And I finally had to admit defeat and change out of t-shirt and shorts into sleeved top and trousers. It's gone cold.

Labels: grumpy, weather

[gump] My monitor has been misbehaving all week - first it wouldn't switch on (until I changed sockets), then it wouldn't switch off, and today it kept onning and offing randomly and then it just went... Kai took it apart, couldn't see anything wrong so put it put it back together and we tried again (on the offchance that fiddling things may have put the problem right) but no joy. So I'm now using Ken's (which is tiny compared to mine), he's using Kai's little raspberry pi monitor (when he needs to - right now he's having an evening off) and I've ordered a new one from amazon (half an inch smaller than my old one but that's fine, the next best one would be an inch larger and I really don't need that). £104 expense we could have done without, but I have to admit the old one is rather old now, and has done well.

Labels: hardware

Ken needed a break from Bristol, and after this last week so did I, so we leapt on a bus to Wells... Nice relaxed time, and we discovered Pickwick's Caffé, a real TARDIS of a place with a wonderfully soothing atmosphere, extremely pleasant staff and excellent coffee..

Tinyscream approves.

Came back with a winter-flowering heather and three silvery mat-forming alpines for the rockery. All in all a fine day!

Labels: days out, Tinyscream adventures, Wells

Off to Keynsham in the morning, to drop off a story Ken is entering into a competition and to have a look around the charity shops. Found A Simples Life, which I picked up for fun, and a thing for Kai, but that was all. Weather was dreadful, and so was the traffic. I could have walked back faster. Although then I would have got very wet so it was probably just as well I didn't.

The Beast Hunters ep was Thirst, one of my favourites. Then after dinner a film was suggested - so we watched Oblivion, which despite Tom Cruise is actually rather good. And gorgeous to look at. OK, it had elements of Moon, 2001, Independence Day and several other films, but the different slant was nice, as was the music.

Tired again though. Sometimes wonder if I'm ever not going to feel tired...

Labels: films, local stuff

Hm. After several hours, yesterday, of assembling all the info 123-reg requested, taking screencaps of error reports and settings, I'd got as far as sending them APAG, BCAP and BCP info (leaving JAT and Jenni still to do) when they came back to me saying they'd found a serious glitch their end and expected it to take 48 hours to fix (implying they didn't need any further info from me), and that they appreciated my patience (which to me always sounds like someone realised there was a massive cockup their end and they'd better fix it asap).

And early this morning I had another message to say they've escalated the problem and will get back to me when they have more info. So it's now out of my hands, and I just hope they can fix it asap!

EDIT - looks like the vibes worked, GoodTwin!

It's a bit of a let up from the stress, at least. Honestly, this year has been a right Cuban Eight!

The 'rockery' is turning back into a rockery. I was going to do it anyway, but Ken said we need to make it amphibian friendly - we need a newtopolis with burrows and cairns roofed over with flat rocks. So that's what Kai and I have been doing. There'll be another one in red rocks up by the fence, where he's already sunk a handful, and the area around the juniper will have a few more settled in later, when we can decide how to make it look as natural as possible (Kai's already put in a few, he wanted the juniper to look as though it was growing out of a craggy outcrop. Heh, my son the garden designer!) But we do now have a sturdy, solid refuge for frogs and newts to the left of the pool (as you're looking at it) which will be perfect for them.

And my second Tinyscream arrived. I need to make some sort of travelling bag or harness so the one I carry with me doesn't get damaged... Yes thanks, I am enjoying my second childhood! (I'm allowed, my first was miserable...)

Starscream twins. Now there's a scary thought.

Perhaps now I can get back to next!Poppy.

Labels: client sites, garden, software, Starscream

123-reg want to know the full details of the problem emails (addresses, headers, error messages...) It's going to take me hours. I shall dedicate tomorrow to it.

Labels: AAARRGGHH, software

Right - where were we?

Ah yes.

Yesterday Kai came with me shopping, and bought himself his new backpack and a pair of decent trainers for uni, and helped me carry the Sainsbug shopping back. Then it was the usual Sunday scramble to get everything done. Whoever said Sunday was a day of rest should be shot.

However, Ken did get to watch the first two eps of Beast Hunters on Cartoon Network, so that was good.

Today... well, of course the problem with the emails is still ongoing. Now waiting for a reply from 123-reg, but I strongly suspect I shall have to ring Virginmedia again. Oh joy.

Also made a very nice rich stock with the chicken carcase from yesterday's roast, and blanched and froze another load of sweetcorn, dwarf beans and tomatoes. After picking them. It's a lot of work but it is very satisfying.

And also took Kai's photo for his uni ID! It's come out very well - I'm pleased with it.

Tired again. Hoping for an early night...

Labels: busyness, shopping, Transformers: Prime

What... the ... fox did I just watch...??

(One of Lin's finds...)

Labels: ... wut...?, strangeness and charm

I am really glad this week is over...

I've spent the last two whole bloody days juggling our main ISP Virginmedia, Fasthosts who hold most of our domain names, and 123-reg who handle most of the hosting. I discovered - a few months ago now but I had more important things on the go at the time - that emails from client site addresses would not send, although I could receive them OK. Fixing it wasn't a high priority, as we usually use the Wavewrights addie for everything. However, we're considering moving Wavewrights to 123- reg (it's cheaper) and since the sub falls due next month it was now time to get it sorted out.

You can imagine my horror when I found Spamhaus had blocked our IP address....

So I rang Virgindedia in the first instance. (Yeah, I know, I hate talking on the phone but they don't provide an email addie for tech support.) Forty minutes later she'd determined that it wasn't a problem their end (which, since Wavewrights was working just fine, seemed reasonable). So today, at 8.30, I opened a tech support ticket with 123-reg...

At just before four this evening I got the problem resolved. I think. I won't know for certain until Monday, but at least everything looks right both at 123-reg and Fasthosts, now. And I've learned more about the esoteric complexities of nameservers and MX records than I ever wanted to know.

On the plus side, the TfP Beast Hunters boxed set comes out on amazon US on the 3rd of December, so of course I've preordered it. $12.99 plus p&p - a bargain!

Still watching and recording it from Cartoon Network, of course, as a back up. Kai and I are both loving it!

It's probably time to get the next Poppy written...

Labels: AAARRGGHH, client sites, software, The Poppy Tales, Transformers: Prime

Shopping. Client stuff. Gardening. Beast Hunters.

This is likely to be the way things go for the next couple of weeks...

Labels: nowt really

Early shopping (Sains deli counter had a leak so they were closed, dammit, so will have to go back tomorrow for ken's Thursday and Friday lunches...), then physio - who is very pleased with my improvements. Range of motion is much better and the exercises are really helping. I will need to continue doing them for the foreseeable future, but they're working!

And then... Transformers Prime: Beast Hunters ep 1...

[VBG] Wonderful...

Labels: shopping, Transformers: Prime

Photos from the Kite Festival.

And Smokescreen was at Sainsbury...

Very nice figure!

Keep dozing off. I think an early night is in order...