Zone Doubt, a.k.a. 'Surreal Я Us'...
Joules, trusted by... dozens... to make a drama out of your crisis...
:: JAT :: WaveWrights :: Publications :: Joules... on writing [on hiatus] ::
I live to write. It's not wise to get in my way.
August 2011: the earlier posts in this blog are a mess, the result of me changing the format some time ago. I'm working to edit the entire blog from the beginning, but with over 4K posts and sodall time for such luxuries it's going to take a while... [02/09/16 - Now reached 09/10/2004]
If you come across any words you don't recognise in this blog, take a look at the Taylorspeke Glossary in the left-hand infopane, you'll usually find a definition there.
Friday, May 30, 2014
Later edit: Kai's first fox vid! For maximum cuteness watch at 720 res...
[pause while I try to remember what's happened over the last four days...] Well, a considerable amount of time was spent indexing Ken's book on St Anne's Well (and then having to redo the lot because I used the wrong .pdf version. oh joy), and we've finished watching The Starlost. I've also finished the write-ups on the IMDb, though I noticed today they haven't posted The Beehive ep yet. Such a pity - the series had the most enormous potential, and here and there you could glimpse the wonderful sweeping ideas that it wanted to portray. It would be fantastic to see it remade with good cgi, good actors (not that the originals weren't but they had so very little to work with) and a good budget...
(Photograph of my little pear tree, showing some of the baby pears I have coming. It will be great if they all thrive - Kai likes pears too!)
Yesterday Kai's platelet count was 10, which is borderline, and the dr recommended he have a unit instead of waiting til Monday. We resigned ourselves to a five hour wait, and were very pleasantly surprised when she said they were ready, just needed to be brought up from their specialised storage. So Kai booted up, and I read the first volume of the Yami no Matsuei manga while they went through, (I picked up some of my missing YnM volumes on amazon but I still need five - 4, 6, 8, 9 and 12 - although I now see the whole lot is available to read online. Not quite the same - I like to hold a book - but at least I can read it chronologically now instead of having to wait until I find the ones I need). And we were home by 2.30 pm.
However, after Kate Robertson's facebook appeal for bone marrow donors for her fiancé, there was about a 650% increase in people volunteering to the Nolan Trust, and in a month or so, I understand, the BHOC will see if there are any good matches for Kai amongst the new donors. Keeping fingers crossed.
And now I'm working on next!Poppy. Hoping to have it finished and posted tonight.
Monday, May 26, 2014
And yet another catchup. Seems that's all I do these days...
Today's BRI appointment was looooooong. The platelets were waiting for us after being ordered on last Thursday! (I actually got a quiet thank you from one of the nurses: we weren't the only people to have problems and it affected the nurses too, both having to apologise for the non-arrival of needed blood products and because it makes their job harder. By complaining, I got management and the various depts to look at the whole system and things are much improved already, I was told. It's not often you get thanked for complaining, and I'm very glad I did!).
But Kai also needed blood today - which explains why he's been feeling bloody awful all over the weekend and why he hasn't been able to get the fox videos done. So blood was ordered while the platelets went through. We had about an hour's wait afterwards, because it has to be cross matched and irradiated, and he has each unit over one and a half hours, so it's not a quick option, but he feels so much better now. Going to have a try at the vids tomorrow. I'll remind him. There are a LOT of people now itching to see them.
And I got half of next!Poppy written while we were there, so happy about that.
My indoor plants are doing quite well...
Pretty little cactus in the bedroom. Only lasted a day but so sweet.
Orchid and orchid cactus in the bathroom.
We've decided we're cutting down the cherry tree at the front, and transplanting Sue's gorgeous Juneberry into its place. The cherry has got old and tired and really isn't looking that great. We'll wait until the pigeons have eaten all the cherries then start tackling it. There are a couple of shoots coming up, which I can pop into tubs so we don't lose the tree completely.
And I think that's about it for now...
Saturday, May 24, 2014
[blink] I usually have the BBC1 cookery programmes on in the background on a Saturday morning and the current featured cook - didn't catch who - just said, "... and I Jackson Pollock a little chocolate over the dessert..."
Dr's appointment was quick and easy yesterday - will get results next week.
Then I found we had no hot water - seemed that the boiler had packed up. So I had a cold shower (oh joy), then contacted a friend to see if they knew of an independent gas engineer (our old one retired and I just haven't had a moment to try to find a new one), and we now have a name and phone number to check next week.
Upon which, we suddenly had hot water again. [grump] Bloody household gremlins...
Next chapter of The Poppy Tales - Celebrations (New World 2 part 16) now posted: link above.
Thursday, May 22, 2014
Dr's visit went well. My BP is slowly dropping: I've cut right back on caffeine and cut out all sweet and sugary things (except fresh fruit) and put myself back on a modified Scarsdale diet (all fresh fruit, veg, lean meat and fish, no sweet or sugary, fried or starchy foods, for two weeks, then relax the rules a little to allow treats, then back on the two weeks strict, repeat until desired weight is reached) which I know works well for me (though in the past it could be difficult sticking to the no-nos. It's easier these days!) Lost half a stone so far. Dr's upped the meds, since I'm fine with them.
It would be dropping faster if the home situation was less stressful: our neighbour has finally killed off the last shred of goodwill we had towards him. Details - and possibly photos - after I've taken legal advice next week.
Today's appointment was nice and quick, line care and blood reviews and Kai'll be fine until Monday, at which point he'll need platelets again. And it's a bank holiday Monday. Oh joy.
Anyway - onto more fun things. Mama Fox (half way up the garden, photo © Ken) -
- brought a cub with her last week, and this week we've had three gambolling in the garden. They are absolutely adorable and Kai will get some footage up on Youtube as soon as he can, but he has well over a hundred clips now and it takes a little time to stitch them all together. Mama seems to come out early, I assume to feed herself, then brings the kids. I am overjoyed that they feel safe enough here to play. (We think dad might have come with them once but they tend to move quickly and it's not easy telling the adults apart unless they're sideways, you can see the difference in their tails then.)
OK - these aren't great (you try screencapping bouncing playing fox kits at night!) but they at least give some idea. The big one is Mama Fox.
Kai has said he'll get some video done for uploading tomorrow evening.
On a less delightful note, my precious Sultan's Palace iris is a slug and bug magnet - so far all the flowers have been eaten despite PV powder and gastropod prevention methods. I think I'll have to dig it up and put it in a pot on a stand or the table, and put slug pellets around it.
Whoa. Torrential rain...
Monday, May 19, 2014
Ye gobs Kai's platelets were ready!! We were home by one pm.
And I managed a page and a half of nextPoppy while we were there.
Saturday, May 17, 2014
The Poppy Tales, New World 2, ch 15 - Progress - now posted: link above.
Friday, May 16, 2014
Kai's RBC was 68 yesterday, so the usual two units of blood were required. (A little worrying as it now seems to be back to blood needed every ten days instead of two weeks+.) For once, however, this fitted in with our plans. The weather was promised to be glorious today - so we went to Severn Beach on the train.
Train was quiet going out (bit busier coming back but not enough to be worrying) and we walked along the breakwater to the headland (probably about a mile each way) where we stopped for a picnic. Almost deserted - but then it usually is - and there was a light sea breeze to cool us down a little. Kai wore the baseball cap I bought him yesterday to keep the sun off his face (Prof Marks advised being wary of the sun as too much exposure now can lead to an increased risk of melanoma in later life after the transplant) and I took his one and only long-sleeved cotton shirt with me in case he was too hot to keep his jacket on. He wasn't. I don't know how he does it, I was melting...
There are ten wind turbines now!
It was wonderful. We both came back feeling great - it was lovely to get out of Briz, even if only a few miles away - and the sea air and sunshine did us both good. In fact, when I measured my BP when we got back it was 137/86, which is the lowest it's been for months and a good improvement (if it stays there, anyway...)
And we have a fox cub on last night's footage! Just one, eating dog food while mum keeps watch. Kai's going to try to stitch a whole load of clips together over the weekend and upload to Youtube: I'll embed them here once they're available.
Wednesday, May 14, 2014
Edit 15.5.14 - Sue: "The first link just gets me a message saying 'navigation to the website cancelled'."
Are you still using IE? What you should get is:
And thanks.Thanks also for the lovely card, Wendy.
Kai's appt at the BCRM went OK yesterday and they don't need him to go back, so that's good.
I couldn't resist...
Yes, it's a Starscream cake topper. And yes, Transformer cake toppers are a thing. He was on ebay for a stupidly low price and free postage from Hong Kong, and he arrived in a dinky little box tied up with string and with pretty bird stamps on it. Nice thing to receive!
BP at 7.30 - 154/99: 15.00 - 150/97: 20.30 - 166/97?? It may be that my wrist monitor isn't working properly or maybe needs new batteries. I'll try new batteries first and take it with me to my appt with the doctor and calibrate it with her reader (if I can).
Monday, May 12, 2014
Gah, completely bloody knackered but I'll probably feel even less like posting tomorrow. So - catch up in brief...
The weekend was busy shopping and cleaning and panicking over today, and no, I didn't sleep very well. We got in for 9.30, and of course the platelets weren't there - though credit where it's due they were being got ready and arrived around 11, so at least something's worked.
Today was the big 'let's get lots of procedures done' day. I was taken down to the apheresis ward for vein assessment at 9.45 - it's quite a peaceful and comfortable place. The nurse had a good look at both my arms and although the veins aren't perfect, she was happy with them (cue a [PHEW!] as I was not looking forward to neck or groin canula!) Got back to the day unit and was weighed and height measured and then they took my blood pressure, which was even higher than expected (192 over 114 if you really want to know. I set off the alarm on the machine...) This of course is not good. Then I was whisked off for a conversation and full details of how this procedure works (it's at this point, of course, that we finally learn we're part of a trial and the procedure - haploid-identical transplant - is still very new. Hm...) And although I pointed out that my BP is normally high, and higher than normal right now due to stress, she said that I was unlikely to be able to donate if it stayed that high (as a rough guide the maximum they'll consider is 140).
Cue a phone call to Ken to ring our surgery to try to get an urgent appointment for me with our own doctor: she had one slot at 5.50, which Ken booked. Then the lovely Vicky (who tried so hard to take my blood samples last time and decided I was an alien when she couldn't) came to try again. (And told me to stop laughing...) However, taking her advice to heart I drank a LOT of water yesterday (and this morning) and she was able to draw what was needed with no trouble at all.
When Kai's platelets had gone through we both had ECGs (and that was embarrassing but at least our nurse was female), then headed off for the chest x-rays. Except one of the department's machines was broken and there was a two hour + wait (for some reason they don't actually book times for x-rays, it seems to be first come etc.) So we went off for Kai to have his respiratory tests (which left him breathless and with a sore chest, which fortunately faded quickly), then it was back to x-ray, where the situation hadn't changed. So I've reorganised for us to have them done next appointment: we'll get there about 8.30 so we're near the front of the queue, then head off to the day unit after (DU reception now know and are fine with it).
THEN it was off for Kai's echocardiogram (basically an ultra-sound of his heart). We were actually nearly an hour early getting there, so I tried a little charm on the receptionist and we got in almost immediately. (Doesn't always work but no harm in trying!) That procedure was fascinating...
Back at the DU we were early for the last appt of the day - a meeting with the radiologist. This is where it nearly became problematic, as we were unlikely to get out before 5.15 and my doctor is the other side of the river and it was rush hour. But the DU receptionist (the lovely Tara) had a word with him and we managed to be seen at 4.30. Relatively quick meeting - he described the procedure and said Kai needed to be measured to make sure he got an equal dose of radiation (which is going to be extremely low) all over, but given that my appt was pretty vital that could be done another day. Extremely nice doctor whose name I've forgotten already, alas, but today feels like three days stuff rolled into one and I'm poggled, so not altogether surprising.
Taxi took the Wells Rd and dropped me at the corner before heading down Talbot Hill to get Kai home. Got to the Surgery in plenty of time.
Explained the situation to my doctor, and added that they were hoping to perform the transplant in June. She stared at me and pointed out this was a pretty tall order. I said 'yes I know, so how do we start?'
... I'm not altogether surprised me and doctors don't always get on...
Anyway, luckily all my blood results from this morning were on the system (as she quite rightly was NOT going to prescribe me meds without knowing my kidney function - which is normal, as is my liver function, and how that hell it's that is completely beyond me...) so I now have Ramipril to take (got the prescription filled at Tesco, who now take your phone number for follow up calls to see if everything is all right! They're a bloody supermarket for gobs sake!) and an appt next Wed to have kidney function checked again.
[growl] So after fighting it for years I finally have to take meds for my BP. I suppose it's for the best. Can get it under control before anything nasty happens...
Kai, bless him, has been great all day. He's very tired now, but happier - as am I - that at least some of the hassle is done, and early and without undue stress. I can't see it lasting, but at least today has been good. Knackering, but good.
Somehow over the next couple of weeks I have to get a whole load of seeds on the go if we're to have anything for the freezer come autumn. I thought I needed clones/TARDIS/immortality before? Hah!
Oooh. Fox warbling in the garden...
Labels: medical matters
Friday, May 09, 2014
Today it was up to the BCRM for Kai's first appointment. Filled in lots of forms, then he disappeared for a while, then taxi home. They want him to go back next week - the more stored, the better, understandably.
Went over to get the Sains shop after we got home - and this time remembered to take my camera. For several weeks now I've seen this sitting on the roof of the local BCC depot, but it was too far away for me to make out any detail except that its head moves...
Seems it's a mechanical wol, supposedly to drive the seagulls and pigeons away, I assume (someone should tell them it's not working...)
Thursday, May 08, 2014
Another catch up...
Yesterday was Kai's appointment at the dental hospital for a thorough check up and full x-ray prior to the transfusion (there will be a number of checks like this...) As expected - because we've always made sure he looks after his teeth - everything is absolutely fine, nothing needs doing, he should just make sure he always brushes twice a day. Nice quick appointment too, 9 am (which we only just made due to horrendous tailbacks: Ken said there'd been an accident) and we were out again come 10 am. Once back I made the now regular bacon sammij for his lunch and went shopping.
After dinner was the third ep of Starlost (which was interesting and insightful, as far as it could be in 45 mins), Masterchef, then the Tomorrow People.
Today's appt went OK. Kai's levels were fine so he didn't need anything, and I spoke with the ward sister about the problems with platelets: she agreed we have been let down and is now checking to see what can be done. In the meantime, Kai has procedures on Monday and he must have platelets first, so I pointed this out to the dr in attendance today and he has told me the lab have assured us they will be there by 9.30. So so will we...
Went up to Broadwalk after we got back, to check charity shops and get bird food. No joy in the shops, and I wasn't happy when I stepped out of the precinct with four minutes to spare before the bus was due to leave, only to see it disappearing over the brow of the hill. Had to walk home in the rain (there's only one bus an hour) and buggered my knee again. I really have to try to find time to see my doctor, these joint problems are becoming a real nuisance.
Finally, I wrote three pages of next!Poppy while at the day unit on Monday, but haven't had time to finish it yet. Hopefully tomorrow or Saturday.
Tuesday, May 06, 2014
The Uni have confirmed that they have deferred Kai's place for another year - that's one major thing less to worry about.
The thing that might become a thing is a smidgeon closer towards becoming a thing. I may know by the end of the month.
Tyjer came in without his collar again. Not very happy about that. He can't go out now until I've bought him one to replace it - and I am not shelling out another £9 for another disc. I'll see what alternatives there are.
I've picked the first asparagus of the year. There's more coming - I should have enough tomorrow to steam to go with the chicken chasseur I'm making for dinner.
And we watched the first two eps of The Starlost. It was going to be just one ep but we got sucked in. Terrible special effects aside (it was 1973 and made on a very small budget) it's extremely compelling. Pretty subversive in places too - made us grin. Interestingly, it has something of the ambience of Sapphire and Steel (hm. The plot guides for seasons 4 through 6 haven't been done for S&S. Might do those after Starlost. Good excuse to watch them all again!) Just hoping it stays on form...
Monday, May 05, 2014
Well, after the dr promising us on Thursday Kai's blood would be ready for him when we reached the BRI and the platelets would be washed while he was getting the blood, we arrived at 9.30 to find nothing had been done and the lab claiming nothing had been ordered, even though the notes say it was and I was standing at reception when the dr was on the phone to them. This is now the fifth time they've let us down, and on Thursday I'm making an official complaint. (Thursday because there will be a staff nurse who will advise me.) The nurse on duty today has also filled out an incident report.
It was gone 7 pm when we got home, and this is now well beyond a joke.
Labels: medical matters
Sunday, May 04, 2014
Yesterday Kim drove us both to Almondsbury Garden Centre (she has a new car, very snazzy Corsa) for frozen rats for Feather, mainly, but I also picked up a couple more irises and dianthuses, and potting compost (the staff were good enough to let me a have a couple of bin bags to protect the car). It was a lovely day, and in the afternoon I hoed the veg bed. Today was lovely too, and after getting a wash out and shopping we planted what I bought yesterday - and the mange tout that were ready for planting out. I've also replaced the grease bands on the apple and pear trees.
Legs are aching now, so have some cat...
Not entirely sure what he thought he was doing here - playing hide and seek?
We've had more footage of the foxes (both of them, but not at the same time - guess while one comes out to forage the other looks after the cubs!) I'll see if I can chivvy Kai along to getting them posted on Youtube, then I can embed them.
Saturday, May 03, 2014
Poppy New World 2, ch 14 now posted - click on link above.
I am very tired..
Labels: The Poppy Tales
Thursday, May 01, 2014
Tyjer didn't want to go out at all on Tuesday, poor kit. He was almost back to normal on Wednesday though, and has been mostly fine today. No further appearance of the fox however. Kai has been putting out the camera and caught glimpses, but nothing like those good early ones. When he feels up to it he'll stitch some shots together for Youtube.
Today was relatively quick: RBC at a borderline 70 and platelets at 16, so no transfusions. He will need them on Monday though, as next week he has an appointment at the dental hospital (standard before a transplant). Then on Monday 12th I get my Bone Marrow Transplant workup:
"Vein assessment to be carried out in the Apheresis Unit, Level 3, BHOC.
Oh joy. Still, I can truthfully answer all the donor health questions with a healthy 'no', which should help. More as we find out more.
The bed behind the greenhouse.
I can't grow brassicas, potatoes or roses - but anything else and once I've got it growing I can't get rid of it.
Acanthus coming back from where I dug it up...
... and even where I never planted it in the first place!
Hoping for a quiet day tomorrow. I have done a lot of shopping this week.