Zone Doubt, a.k.a. 'Surreal Я Us'...

Joules, trusted by... dozens... to make a drama out of your crisis...

Other sites:

:: JAT :: WaveWrights :: Publications ::

I live to write. It's not wise to get in my way.

... I'd write my autobiography, but no-one would believe it....


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.


The Poppy Tales

(Transformers fanfiction!)

Transformers mini-comics here.




Adventures in Orchids

Apparently I am now collecting them...

There's room for one - or maybe two, at a pinch - more on that bedroom windowsill (the only one in the house that's ideal for them). Let's see what I find. Well, that didn't last long...


EO - Everlasting orchid. Phalaenopsis. I've had this orchid since 2007 and it just keeps flowering...







AO - Alien face orchid. Phalaenopsis . Bought 2018 - lovely little flowers, all different patterns!





RO - Rescued orchid photo to come when it flowers. Phalaenopsis. Rescued from a bin up the road in 2019. Classic!






TO - Tiny orchid. Phalaenopsis. Bought at Tesco 21.8.20. It just begged to come home with me. How could I say no?





CO - Crimson orchid. Cambria. Another Tesco find. This one may be going to live in Ken's room once we've redecorated and put up the new shelving; it prefers a cooler, less sunny windowsill. If so, I'll need to find another cambrian to keep it company.






GO - Golden orchid. Phalaenopsis. Saw this one when I bought CO and left it behind - then immediately regretted it as soon as I got home. Never seen one like it before. Ken, bless him, went back over to Tesco in the rain and bought it for me...





DO - Dendrobium Orchid. Smells of wisteria, so beautiful...











RO2 - Rescued orchid no 2. Phalaenopsis. This is the one I rescued from the wall along the road middle of 2021.








PO. Pink orchid. Phalaenopsis. This is the one I bought at Cabury Garden Centre on special, late 2021. It's much happier here!










TWO. Teeny weeny orchid, Phalaenopsis. Rescued from Tesco end 2021 (I think).




















My IMDb ep summaries

(completed)
Arthur of the Britons
Sky
Star Maidens
The Starlost
Space Rangers
The Sentinel (part: seasons 2 and 3)
Swamp Thing (part: season 3)
Gravedale High
Transformers: Armada
Transformers: Energon
Transformers: Cybertron (part)
Misfits of Science (four eps)
Zoo Gang
Zodiac
Jupiter Moon
Transformers: Beast Wars (part: seasons 2 and 3)
Transformers: Beast Machines (part)
Vampire Princess Miyu
Starhyke
Nathan Barley
No Heroics
Undermind (3 eps)
Will Shakespeare (Tim Curry version)
Nightwalker
12 Kingdoms
Trigun (ep 8)
Rayearth
Hyperdrive (season 2 ep 3)
The Café

For later:

Missing Earthian ep
Missing Haibane Renme eps


Silver birch at Eastwood 

Farm

"Autumnal - nothing to do with leaves. It is to do with a certain brownness at the edges of the day... Brown is creeping up on us, take my word for it... Russets and tangerine shades of old gold flushing the very outside edge of the senses... deep shining ochres, burnt umber and parchments of baked earth - reflecting on itself and through itself, filtering the light. At such times, perhaps, coincidentally, the leaves might fall, somewhere..."

(Rosencrantz and Guildenstern are Dead Act 2: Tom Stoppard)

Autumn...

I love this time of year. I love the colours, the sharp slant of sunlight on the trees, mosaics of acid-yellow and harts- blood, velvet and darkness and a haze of mist-grey over the hills. I love its immanence, its mellowness, the tang of frost just around the corner of the year...

Watching the little birds in the goat-willow in my garden, I realised something more.

I love this land with a fierce, possessive love, deep-rooted in two thousand years of history. From the frosted beaches and cloud-brushing peaks of the north to the wind-haunted meanderings of the rivers of the east, from the sensuous rolling patchworked hills of the south to the demanding dark moors of the west, this land seeps into bone and blood and synapse, mother of motley nobility, culture, individual freedoms. It can be known. It can be understood. It can be felt deep inside.

I love its effortless eccentricities, its vigour and vibrancy, its flawed perfections, its silent strength and tenacious resilience, its hard-won tolerances and intense and variable beauty, the profound energy in its sacred mythical landscape.

Home and more-than-home, the forces that shape and protect and bind, in me, as I am in the land. Love returning love in the stillness for those who'll only take the time to listen...

(Joules, Autumn 2004)


All photographs taken by Joules unless otherwise specified. All photographs © Joules A Taylor or other specified individual.


In Memoriam

17.03.09 - Argent

25.07.08 - Raptor

18.12.07 - Quyn

02.12.06 - Ryme


Currently enjoying:
Muse
Transformers - IDW, Prime, Animated, Rescue Bots.

Currently reading:
Various Transformers books and graphic novels.



Currently working on:
Haadri

Currently chuffed with:
My garden

Currently miffed at:
Nestlé, Nonpres Tinyhands Fart, Toadface Farage

Currently maintaining:
BCHS
BCW


Blog Pics
I've gathered some of my pages of photos together: the page of links is here. I'll be adding more as time goes by!




Evil Squid
A Little Glossary of Taylorspeke
(in no particular order)

plit popints - n. Typo for 'plot points' typed on a keyboard with more than half the characters worn off...

[PING] (alt [ping]) - n. A brainwave. The text equivalent of a lightbulb going on blindingly over someone's head. Usually mine. And usually at the most inconvenient of times. [sigh]

TPTB - The Powers That Be.

wulmet - n. A person of little or no talent who somehow inveigles himself into a position where he is in power over other, far more talented people and uses his position to downplay them in order to try to make himself feel superior.

biteable - referring to an anatomical part vb, tasty.

Flatterfed - vb. 27.02.08: my typo for flattered, but since it's so cutely apt I thought it would fit nicely here. Lutra defined it as "the lovely warm feeling of satisfaction resulting from enthusiastic reviews..." (which I've been getting for my MB fics).

Composted - vb, 'compos mentis', mentally capable of working. Contrast with uncomposted or non- composted, not 'compos mentis', not capable of working, hungover...

Cumbles - n, cucumbers.

Kewp - how Ken says 'thank you'. We rather like Lutra's 'nanx', too...

Musekick - noun, music, without which I cannot work.

'feinne - noun, caffeine, essential for correct mental functioning, especially first thing in the morning. I prefer mine in the form of SodaStream Diet Coke. And on that subject...

Skoosh - verb, noun. To skoosh - to add CO2 to a sodastream bottle filled with water to make it fizzy, prior to adding Diet Coke syrup (or just drinking as sparkling water). A skoosh - a bottle of water that has been skooshed. Skooshy - something that has been skooshed, water, or that whipped cream that comes in tins you have to shake then upend and press the nozzle...

Shoogle - verb. To shake gently, for example, of roast potatoes in a roasting tin to ensure they're covered with oil. I have vague memories of this being a real Scottish colloquialism...

Stegasaurus - n, spider of the genus tegenaria. Why? No idea. I just find it easier, that's all...
Edit 08.09.07: Lutra thinks that Brian is a good name for a mini-stegasaurus. From now on, any 'Brian's in the posts may be assumed to be a tegenaria. Except where otherwise specified.

Viterals - noun, vitamins + minerals. Also a pun on victuals.

Splish - verb. A combination of slosh and splash.

Parrots - noun, paracetemol (from the old joke "Why are there no aspirin tablets in the jungle? Because the parrots eat 'em all...")

Maggles - noun, magpies. As opposed to non-magical people.

Flamewings - noun. Swifts. So called because the first time we became aware of them was an early summer evening when they were flying high, the light from the setting sun seemingly turning their wings to flames. Lovely little birds. We always know summer's arrived when we hear their high-pitched squeeing.

Murfs - noun, moths.

Peasant cut - noun, roughly cut up into big chunks, e.g. vegetables chopped in a hurry for a hearty stew or soup. By extension, anything prepared in a hurry - haircut, material, even a first draft of a story...

Giraffe - noun, a carafe (of wine, coffee or water, for example).

Shrumps - noun, mushrooms.

Splings - noun, Kai's spelling homework: by extension, any spelling.

Tyops - noun, typos. var toyps, typso, psyto, psoyt, etc. Usual result of a dose of the fingerials (see next entry).

Fingerials - (pr. fin GEEE ree yalls) noun, fingers that will not type what you want them to.

Haddock - noun, time, of which I never have enough. (Origin of this term here.)

Sleep - noun? vb? a.k.a. sheeeeeeeeep.... I used to know what this word meant...


The Updates Blog

The place to stay notified of WaveWrights' Fiction updates: Zone, Darkside, DarkRealm, Matrix, Vault, Safehouse 13...




my computer gremlin Butch. click the pic to see the larger image

Butch, my computer gremlin. Click the pic for larger version, and read his adventures here...

Butch by the talented 

Sylverthorne

A gift for me! Butch by the very talented Sylverthorne. Click pic for larger image.

Joules' 

Haddock

This is MY haddock. It was caught exclusively for me by Talon. No, you can't have any. I need all the haddock I can get!!



A'lestrel by Valkyrie.

A'lestrel - a gift for me from Valkyrie...



Albino Alsatian Benten (c) MEBird 

2004

Another gorgeous Valkyrie gift for me - Benten the Albino Alsatian! Click thumbnail for larger image.

Radittsu, an oekaki for my birthday 04 

by 

Onna

Oekai by Bakayaro Onna - Radittsu at his sexiest...



The Zone Plant from
The Zone 

blog 

plant

OrganicHTML (which alas no longer seems to exist...)
[::..My Regular Reads..::]
:: Astronomical Pic of the Day [>]
:: What is Space... [>]
:: Dark Roasted Blend [>]
:: BLDG [>]
:: Watchismo Times [>]
[::..Fun Places..::]
::HubbleSite
Stunning...
::PALEOMAP Project
Absolutely fascinating.
:: Skymap
Check out the night sky where you are!
[::..Useful Sites..::]
:: GreenNet
First stop for environmental matters
:: The Forest of Avon
Our local community forest and places to visit
:: The Guardian
Online Guardian Newspaper.
:: Symbols
Exactly what it says
:: World Timeserver
For checking the current time around this world
:: Universal Currency Converter
Actually it's just a terran-global currency converter, not universal, but it's still useful...

So what is it with the haddock? Am I some kind of fish freak?

I'll leave that to others to decide.

The tale (or tail if you prefer) harks back to October 2000, when my GoodTwin and I, ably assisted by Sue, ran the first UK Professionals convention...
It's common knowledge that I never have enough time, and I was determined not to bewail the fact that weekend: hence I promised not to use the 'T' word...
Of course, that didn't really work (if nothing else I had to let the trainees know what times things were supposed to be happening!) so we decided a substitute word would be employed instead. There were several suggestions. Banana came very close to being chosen. However, I eventually decided that 'haddock' fitted the bill nicely. Ever since, haddock=time. Hence the title of my forthcoming autobiography,
My Half-Life in the Haddock Space Continuum....


Normally I wouldn't, but these were just irresistible...

How could I resist?

Just too adorable...

and to complete the rainbow...

These Too-Kawaii Kitties
were adopted from
Ghost's Anime Page (which appears to have disappeared, alas...)

[::..Anime/Manga..::]
Useful sites:

BBTS -
Fabulous anime figures

Anime Lyrics
A huge selection... evil popups

Anime still needed to complete series' I'm collecting... Many thanks to everyone who has helped me acquire the collection!
Ai no Kusabi

Owned:
   DVD
   Dj: June Special
   CD: Ambivalence

Cyber City Oedo 808

Owned:
   DVD
   All 3 eps on Video, dubbed
   Dj: Cyberage 1-3
   Illustrated Book 2 (Benten's) in Japanese

From Eroica with Love

Owned:
   Manga Vols 1, 9, 11

Mirage of Blaze

Owned:
   DVD Vol 1 (eps 1-4)

R.G. Veda

Owned:
   English Manga: Vol 1
   Japanese Manga: Vol 1-7 complete
   Tarot Pack
   R.G.Veda video

Twelve Kingdoms

Owned:
   Anime Vol 1-12: complete

Under the Glass Moon

Owned:
   Manga Vol 1, 2
Vol 3 needed

Vampire Hunter D - Bloodlust

Owned:
   DVD

   Vampire Hunter D Book 1



New Vampire Miyu

Owned:
   (Studio Ironcat) Manga Vols 1 -5 (complete)


Yami no Matsuei

Owned:
   Viz Manga: English translation, Vols 1 - 11 (complete: I believe vol 12 is only available online)
   Japanese 3-DVD set
   Central Park Media: Descendants of Darkness Vol. 1, English/Japanese subbed.
   Sketchbook


[::..Joules SP fied..::]


... this is Terra? How the hell'd I end up here...?

(Thanks, Lutra, for the quote!)

[::..archive..::]
07/01/2002 - 07/31/2002
08/01/2002 - 08/31/2002
09/01/2002 - 09/30/2002
10/01/2002 - 10/31/2002
11/01/2002 - 11/30/2002
12/01/2002 - 12/31/2002
01/01/2003 - 01/31/2003
02/01/2003 - 02/28/2003
03/01/2003 - 03/31/2003
04/01/2003 - 04/30/2003
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06/01/2003 - 06/30/2003
07/01/2003 - 07/31/2003
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02/01/2004 - 02/29/2004
03/01/2004 - 03/31/2004
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05/01/2004 - 05/31/2004
06/01/2004 - 06/30/2004
07/01/2004 - 07/31/2004
08/01/2004 - 08/31/2004
09/01/2004 - 09/30/2004
10/01/2004 - 10/31/2004
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12/01/2004 - 12/31/2004
01/01/2005 - 01/31/2005
02/01/2005 - 02/28/2005
03/01/2005 - 03/31/2005
04/01/2005 - 04/30/2005
05/01/2005 - 05/31/2005
06/01/2005 - 06/30/2005
07/01/2005 - 07/31/2005
08/01/2005 - 08/31/2005
09/01/2005 - 09/30/2005
10/01/2005 - 10/31/2005
11/01/2005 - 11/30/2005
12/01/2005 - 12/31/2005
01/01/2006 - 01/31/2006
02/01/2006 - 02/28/2006
03/01/2006 - 03/31/2006
04/01/2006 - 04/30/2006
05/01/2006 - 05/31/2006
06/01/2006 - 06/30/2006
07/01/2006 - 07/31/2006
08/01/2006 - 08/31/2006
09/01/2006 - 09/30/2006
10/01/2006 - 10/31/2006
11/01/2006 - 11/30/2006
12/01/2006 - 12/31/2006
01/01/2007 - 01/31/2007
02/01/2007 - 02/28/2007
03/01/2007 - 03/31/2007
04/01/2007 - 04/30/2007
05/01/2007 - 05/31/2007
06/01/2007 - 06/30/2007
07/01/2007 - 07/31/2007
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01/01/2008 - 31/01/2008
01/02/2008 - 29/02/2008
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01/12/2015 - 31/12/2015
01/01/2016 - 31/01/2016
01/022016 - 28/02/2016
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01/12/2016 - 31/12/2016
01/01/2017 - 31/01/2017
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01/12/2017 - 31/12/2017
01/01/2018 - 31/01/2018
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01/08/2018 - 31/08/2018
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01/10/2018 - 31/10/2018
01/11/2018 - 30/11/2018
01/12/2018 - 31/12/2018
01/01/2019 - 31/01/2019
01/02/2019 - 28/02/2019
01/03/2019 - 31/03/2019
01/04/2019 - 30/04/2019
01/05/2019 - 31/05/2019
01/06/2019 - 30/06/2019
01/07/2019 - 31/07/2019
01/08/2019 - 31/08/2019
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01/10/2019 - 31/10/2019
01/11/2019 - 30/11/2019
01/12/2019 - 31/12/2019
01/01/2020 - 31/01/2020
01/02/2020 - 29/02/2020
01/03/2020 - 31/03/2020
01/04/2020 - 31/04/2020
01/05/2020 - 31/05/2020
01/06/2020 - 31/06/2020
01/07/2020 - 31/07/2020
01/08/2020 - 31/08/2020
01/09/2020 - 30/09/2020
01/10/2020 - 31/10/2020
01/11/2020 - 30/11/2020
01/12/2020 - 31/12/2020
01/01/2021 - 31/01/2021
01/02/2021 - 28/02/2021
01/03/2021 - 31/03/2021
01/04/2021 - 30/04/2021
01/05/2021 - 31/05/2021
01/06/2021 - 30/06/2021
01/07/2021 - 31/07/2021
01/08/2021 - 31/08/2021
01/09/2021 - 30/09/2021
01/10/2021 - 31/10/2021
01/11/2021 - 30/11/2021
01/12/2021 - 31/12/2021
01/01/2022 - 31/01/2022
01/02/2022 - 28/02/2022
01/03/2022 - 31/03/2022
01/04/2022 - 30/04/2022
01/05/2022 - 30/05/2022
01/06/2022 - 31/06/2022
01/07/2022 - 31/07/2022
01/08/2022 - 31/08/2022
01/09/2022 - 30/09/2022
01/10/2022 - 31/10/2022
01/11/2021 - 31/11/2021
01/12/2022 - 31/12/2022
01/01/2023 - 31/01/2023
01/02/2023 - 28/02/2023
01/03/2023 - 31/03/2023
01/04/2023 - 30/04/2023
01/08/2023 - 31/08/2023
01/11/2023 - 31/11/2023

Friday, August 29, 2014

Day -4 

Edit: and then I forgot to say! Asked to have my BP taken, and to my joy and relief it was a perfectly normal (for me) 140/93, on a normal day when I wasn't overly stressed nor overly relaxed. It's been around that now for a month: I won't be able to get it down any further without losing more weight - which is planned, but not before Monday! Anyway, point is there now no reason for any hesitation over me donating. This is very good.

Wednesday update... I was sitting with Kai when head nurse Nick popped down from the day unit with a puzzled look on his face, asking if I was in for anything. I said yes, to visit Kai, but I'd see him tomorrow at 4 for the first of my injections....

[sigh] Long story short because I'm tired, my injection schedule had somehow not reached the day unit (where the actual injections are supposed to be done). [headdesk] These are pretty bloody vital for the whole procedure to go ahead. So after a bit of panicking it was decided I should get to the day unit at 11 on Thursday morning and they'd administer the first dose - and take it from there.

At least the pharmacy sent the right stuff. Injection was no bother (well, there were two and the second one pranged a nerve, so that was a bit ouchie, but overall it was a couple seconds of discomfort and back to Kai, whose room is at the other end of the corridor.) I was warned it could cause aching, so I was anticipating it (I have constant aches anyway), and last night it was distinctly uncomfortable. The second one this morning has left me even more so, even with taking parrots (can't take anything else on the BP meds) so I am not anticipating a good night. But it's finite. And the chemo is now making Kai feel pretty poorly, so I can hardly complain...

Oh, if anyone would like to send him a card, his address is:
Kai Taylor
Room 12a
Ward 62
BHOC
Horfield Road
Bristol
BS2 8ED.

Foxes and funnies (especially science related ones) would be most appreciated!

Labels: , ,





0 Comments:



Wednesday, August 27, 2014

Day -6 

So, after sodall sleep on Monday night, yesterday we headed off in to the BHOC at 9 for the appointment at the Brachytheatre at 9.30, for Kai to be measured for his TBI (total body irradiation). Estimated time was half an hour, but it only took five mins, then we headed up to the day unit for review and admission (that was scheduled for 10.45, so Kai had a book ready...)

We arrive at 9.45, to have Hilary (one of the senior nurses in charge of the day unit) usher us into one of the consultation rooms, saying, "I've just tried to ring you - the anaesthetist was here at 8 am looking for you...")

Uh, what...?

Turns out we should have been told that Kai was due to have his PICC line put in early in the morning. (Except he has to have platelets before anything like that and yet again the platelets weren't ready, the lab claiming again that they hadn't got the bloody standing order for them that the BHOC doctors keep ordering, and they wouldn't be ready until midday at the earliest and more likely later. I can see I'm going to have to make another official complaint. Like I need the hassle.)

I pointed out we'd had nothing from the transplant team to let us know the schedule. Nothing at all. We should have had a letter - or at least an email - with all the details.

Turns out the transplant team coordinator's father was suddenly taken ill and he apparently just up and left and flew back to India without fucking handing over to anyone. Which, as the consultant in charge of Kai's case said, was completely unacceptable.

Damn right it is!

So, all in all a great bloody start.

At least his room was ready and is quite pleasant, with a nice view (even better one from the vestibule, out over the city and out to Dundry and Kingsdown). So we got him settled, he finally got his platelets at 4 pm, then went straight down to have the PICC inserted (I went with him, it was quicker and easier than the first time, but then we knew what to expect), then it was back up to his room and dinner (sausage hotpot with chips and green beans - nice big portion, smelt great and Kai said it was very tasty, so at least I know he had a decent meal last night).

They hooked him up to a hydration fluid all last night (eight hours) which meant he didn't sleep very well, and apparently the lab are several hours late with his first batch of chemo this morning. That's less urgent, as there's some leeway now he's actually been admitted. Still annoying though.

However, we now have the schedule, and it is, as one of the doctor's called it, pretty brutal. But we feel fairly positive about it all, and Kai said he's just going to fight all the way. But he wants me there as much as I can be, so my time here will be a bit hit and miss for a while. I'll report back when I can.

The actual transplant will be on the 2nd. Your positive thoughts and 'fluences are still most welcome: quantum entanglement is random but things do get through...

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Saturday, August 23, 2014

So that's the new Doctor. I like. I like very much. And that ep had the ambience of some of the really creepy first series episodes too. Unfortunately next week is the bloody pepper pots again [sigh] but we'll see.


We really need to prune the apple tree this autumn, the fruit is so abundant it's dragging the branches down to the ground...

Things we've watched recently... Noah (on Filmflex. Weird. Tries to be all things to all people and doesn't really succeed at any of them), Divergent (disappointing), Captain America: the Winter Soldier (basically bought as we're collecting that entire 'verse of films. It's OK, well done, enjoyable, but Cap was never one of my favourites.)

Other news - not much. Packing away the extraneous stuff in our room continues apace, and I had my hair cut today.

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2 Comments:

Blogger GoodTwin said...

We quite liked the new Doctor as well.

For the last few years our apple tree has put out a lot of fruit, mostly small. This year it's put out some huge apples but very few of them.

10:35 am  
Blogger Writer Chick said...

That's a very ambitious apple tree!

And a very somnolent Tyger.

11:36 pm  



Thursday, August 21, 2014

Later edit:

Decided, now I have the new computer, I'd try to get the speakers working again - to drown out the almost-nightly shouting and swearing from next door, if nothing else: last night I could still hear it in the bedroom (though admittedly not well enough to hear every word, unlike downstairs).

Three months after I bought the previous computer, the speaker software packed up, and I've only had music through the headphones since - which is highly inconvenient with wet hair. I packed away the transformer and cables, and forgot about them until recently. Ken said they were in the big box of cables up in his cupboard, so he looked it out for me yesterday...

Kai and I spent an hour and a half digging through it (I'm pretty sure half the cables can be ditched!) but couldn't find them. The old Netgear transformer worked - but the only cables we had were too short. I'd pretty much resigned myself to buying new when Kai said, "I'm sure there was another box..."

So I scrabbled through the cupboard and found a box with the old phone cables and Ken's soldering iron.

... and a box labelled 'Joules' speaker cables and transformer'.

[headdesk] [sigh]

Five minutes later I have sound! Oh, this is nice. Doesn't have to be very loud to make everything else unhearable, either (although adjusting the three different volume controls all to max will shake the windows. If I ever feel like it. [g])

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After the transplant it's going to be a while before Kai can go out, once he's home again, so on Tuesday we went to Severn Beach.

As usual the train was pretty much deserted, and the weather sunny, cool, breezy with scattered showers - actually perfect as far as we're concerned.


We walked out as far as The Pipes, further than last time and Kai had a lot more energy, striding along like he used to. We sat and had lunch on the headland - and then noticed that the rain in Wales was getting closer...


(I still get a kick out of standing in England and being able to see another country across the water!)

... We - mostly me - were distinctly wet by the time we got back to the station. But it was a fantastic afternoon, and Kai really enjoyed it, and he wasn't too tired the next day, so that was all good.

Yesterday I had to get into the BHOC to collect Kai's aciclovir (forgot to do it on Monday) so took advantage to pop into Primark to pick up some new trousers for me (the sweat pant sort I usually wear because they're so damn comfortable) since my current ones now won't stay up. To my delight I've actually dropped two sizes! Going to pick up a couple more while I'm in town next week Ken could do with a new pair and Kai goes through his like no-one's business...)

Today it's more general tidying and blanching/freezing the mange tout and beans I managed to grow.

Oh, and we've decided that we're swapping rooms: Kai uses his as his office and really doesn't have enough room for his desk, table and computer along with bed, chest of drawers and all the other paraphernalia in his bedroom, while all we have is the bed, two bedside cabinets and a small bookcase, and all we do in ours is sleep, so it makes sense for him to have the larger room. It's a bit of a logistical nightmare, as I'll need to paint his purple wall pale blue and the feature wall teal, and paint our teal wall pale blue, and swap over the curtains and pelmets and make long curtains to cover the 'wardrobe' spaces on either side of the chimney breast. One of those will be Kai's wardrobe and the other one will house all his (five) guitars (YAY! They'll be tucked out of the way and gathering less dust at last...) In the meantime, in order to fit our clothes into Kai's fitted wardrobe I've had to reduce my clothing by half (several large bags went to charity, all stuff that I've gone off, will never wear again, or is too big): Ken still has to do his. That'll be fun. Not. (The overflow will go into the large cupboard in Ken's office - mainly coats and jackets.)

But the end result will be worth it. And we know we're fine with the smaller room: it was our bedroom for a couple of years when we first bought the house.

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2 Comments:

Blogger Writer Chick said...

Wonderful that Kai is "striding along like he used to."

Speakers: headdesk indeed, but all's well that ends well, and anything that ends without neighbours swearing and screaming is my definition of "well."

What a great idea the room-swap is. And Kai has FIVE guitars? I have one, and a wish list on Amazon ...

7:35 am  
Blogger Joules *Dances with Haddock* Taylor said...

It was great. I look forward to it becoming the norm...

It's so wonderful to have a roomful of music again!

Yers... His first freecycled electric guitar (which is behind me in this room) which he could probably easily recycle but it was his first ever and he's attached to it; the 4 string electric bass we bought him for a birthday; the 6 string steel acoustic one we bought him for another birthday;
the 6 string nylon acoustic; and the 7 string electric that he usually uses when he wants a break from everything else. He bought himself his own amp, and practises using his headphones.
He also has two keyboards.

... he really needs our room!!

11:35 pm  



Monday, August 18, 2014

Just platelets today - RBC was at 92 (actually quite high) and neutrophils at .50. And my BP was 139/92 - not too bad at all. There'll be a letter confirming the schedule, but we've been told Kai will be admitted to the ward on the 26th ready for the final 'conditioning' - basically the radiotherapy to kill off the rest of his immune system. Which is an absolutely terrifying thing to type...

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1 Comments:

Blogger Writer Chick said...

Yes, it is a terrifying thing to type. But it's the next-to-last step in this process. Almost there. Chin up. Keep calm and carry on.

6:56 am  



Friday, August 15, 2014

Work-ups went OK. Of course, I was so stressed and worried that they'd say my BP was too high that it was through the roof when they took it. Just as well I had Dr Reading's letter with me. After some deliberation the transplant team have OKed me to donate, with an average BP of 146/90 (rather better than the 197/120 that I started off with in May. I can also confirm I have lost two stone in that time...)

So - barring catastrophes - we're all set.

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2 Comments:

Blogger Writer Chick said...

Bars for catastrophe will arrive shortly!

Big, fat, round, iron bars.

12:57 am  
Blogger Joules *Dances with Haddock* Taylor said...

*chuckles* Thank you! That'll lern 'em!

1:12 am  



Wednesday, August 13, 2014

Well, we're back home, and Kai's had his echocardiogram. Tomorrow is the respiratory tests and TBI (total body irradiation) meeting: since he had a chest x-ray when he went in last Sunday looks like he doesn't need another. He'll be admitted to the ward five days (I think) before the transplant for his 'conditioning', which includes the radiotherapy. I get my full work up tomorrow, and I now have my schedule: four days of injections of granulocyte colony stimulating factor (G-CSF), and since this is from Thursday to Sunday (28th to 31st Aug) I think I'll just go into the BRI. I'll be able to ask any questions I've thought of in the meantime then. Then 8.30 am Monday 1st and Tuesday 2nd September it's the related donor peripheral blood stem cell collection (PBSC - my bit) and, I believe, as soon as that's done and prepared, they give Kai the transplant (either on the 2nd or the 3rd - it has to be done quickly I believe). For him, it'll be like a normal platelet transfusion.

And then we wait.

And cross fingers, fast, will, pray, sell soul to the devil, "... make a deal with god, and get him to swap our places...", whatever works...

It'll be a minimum of a week before we know anything, and more than likely a lot longer.

I think Kai is relieved it's finally going to happen, and seems optimistic (at any rate, he was wondering whether it would be OK for him to go to conventions and concerts 'once I'm sorted'. We'll get advice about that but I can't see any reason why not).

Oh, yes... although my blood pressure still isn't quite as low as the transfusion team want, Dr Reading has decided it's now at a level that's normal for me (when stressed! 148/96 this morning) and is perfectly OK with me donating. She pointed out it does vary, and did reach very close to the 140/80 they requested a couple of months ago. She's given me all the readings she's taken (and is extremely pleased I've done so well - so am I, and two stone gone now) to give to the transplant team tomorrow. If the Day Unit can wait an hour or so to take my BP it'll be lower, as it's less stressful away from home at the moment. We'll see, but we're kind of committed now...

More later.

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Tuesday, August 12, 2014

Things are stable. I'm not going to say anything more in case I jinx it...

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He finished the anti-bios and his temperature was down to normal, but they decided to keep him in overnight to be on the safe side.

And now he has a temperature again.

They've had to remove the cannula in his hand (we think the needle was too big, it was unbearable) and put a new one in the opposite elbow, and are giving IV paracetamol to tackle the temperature. He's really not having a good day.

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Quickie before I make fajitas and head in...

They took the PICC out yesterday - a very quick and completely painless affair. Now they have to schedule putting in another, either on the other arm or a central line. (I'm hoping not a central line: they scare me.) In the meantime he has a cannula in his left wrist (where they found the best vein to use temporarily) which makes it difficult for him to use that hand...

If everything goes well and they're happy, there were mutterings about discharging him today. However, we have to go back in tomorrow. Remember all those checks we both had to go through a month or so ago? We have to go through it all again to make sure the info is completely up to date. It's Kai's respiratory test tomorrow. On Thursday, along with the normal appointment, he has his ecg and chest x-ray, while I get my ecg, full bloods, weight and BP done. Not sure if I have to have another x-ray or not. They've also booked Kai in for another complete dental check up: going to ask if that's really necessary as nothing has changed there. It probably will be though...

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Monday, August 11, 2014

Kai woke up yesterday feeling worse than normal: watched a couple of films and we kept an eye on his temperature. Come 4 pm it was 38.4°: I rang the hospital and they said to get him in. So he's back in Area 61 under observation and being pumped full of anti-bios again.

At least his room has a wonderful, huge window with a splendid view of the sky...

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Saturday, August 09, 2014


Pretty sunset last night...

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Thursday, August 07, 2014

Quick appointment as Kai had blood at the weekend and platelets on Tuesday. We saw Prof Marks, who says my apheresis is to go ahead on the 1st and 2nd of September, so I guess Kai's transplant will be on the 2nd. The blunt facts are haploid-identical transplants have a 50 - 80% success rate: they've put Kai's chances at 65%. There are a lot of things that can go wrong, at least one of which can be fatal, but the Prof is cautiously optimistic, as Kai is young and fit apart from the AA. If it doesn't work and nothing else goes wrong, he should be in the same state as now. I did ask what would happen then but he said to take it one step at a time...

I'm not going to talk about this again until after the event.

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Tuesday, August 05, 2014

Kai's home - was discharged 9.15 pm after platelets. He's looking and feeling much better, and has 5 days' worth of other anti-bios to take before going back to a (reduced) dose of ciprofloxacin.

Tyjer couldn't get enough of pettins from him! Cat missed him as much as we did I think (and not because of bed, he's not allowed in Kai's room!)

More tomorrow - I'm knackered.

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2 Comments:

Blogger GoodTwin said...

That's good to hear. Keeping up the 'fluences.

Poor Tyjer's world was disrupted as well!

7:44 am  
Blogger Sue said...

So pleased to hear Kai is home. You can all rest a bit now.

9:30 am  



Monday, August 04, 2014

Quickie because it's been a couple of days. Kai is slowly improving, his 'infection markers' are considerably reduced, and there's mutters about selecting a day he can come home, which is very reassuring. No news yet as to whether they need to remove the PICC, but I'm hoping that means they're happy to leave it in.

More as it happens. Sue, will get back to you when I can but probably not for a few days - I'm knackered again and have got to try to get more sleep.

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Saturday, August 02, 2014

Back from the hospital. His temp is still at 37 - not gone up so that's good - and while I was there the doctor arrived with the culture results. It's a staphylococcal infection, which possibly entered via his PICC (apparently it particularly likes plastic). He's on additional anti-bios, but there's still a risk the PICC may have to be removed, which is going to increase the risk of infection every time he has a canula instead - plus it's painful. Keeping fingers crossed the new anti-bio knocks it on the head and he can keep the line...

One of the nurses on Area 61 is a young lass called Kai (though maybe not spelt that way) and another is called Kaiya. They were joking he wouldn't forget their names.

I also keep forgetting to say: the lumens on the end of the PICC line are red and purple, Autobot and Decepticon colours respectively!

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2 Comments:

Blogger Writer Chick said...

...and has Kai decided which faction he'll be going with, since he wears both colors?

1:53 am  
Blogger Joules *Dances with Haddock* Taylor said...

*g* He's not really that into it. Liked Prime, liked Animated, the rest, not bothered.

He could always auction himself, of course...

11:34 pm  



Friday, August 01, 2014

Nurse took his temperature while I was there, and it had come down to 37, which is definitely heading in the right direction. He was feeling a bit better too (though only a bit), but very dozy: he'd been given anti-sickness meds that worked but made him sleep. In fact, he slept most of the two and a half hours I sat with him, but he had perked up a little by the time I had to leave - even managed a small smile. We're not there yet, though, so please keep fingers crossed and 'fluences flowing.

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2 Comments:

Blogger Writer Chick said...

'Fluence now flowing, gates wide open ... ask Kai if he will accept? Otherwise it goes to feed the birds.

3:18 am  
Blogger Joules *Dances with Haddock* Taylor said...

Accepted, with thanks. (I already feed half the birds in Briz...)

8:42 am  



Kai was on skype this morning. His temperature was at 39.9 last night, but had come down to fluctuating between 38.2 and 39. He was still on intravenous paracetamol and anti-biotics, but warned me he was probably not going to be on skype much. I've done all today's jobs and even managed a small bowl of salad, and will be heading in very shortly. More when I get back, hopefully.

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