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

Arthur of the Britons
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
Jupiter Moon
Transformers: Beast Wars (part: seasons 2 and 3)
Transformers: Beast Machines (part)
Vampire Princess Miyu
Nathan Barley
No Heroics
Undermind (3 eps)
Will Shakespeare (Tim Curry version)
12 Kingdoms
Trigun (ep 8)
Hyperdrive (season 2 ep 3)
The Café

For later:

Missing Earthian ep
Missing Haibane Renme eps)
(And possibly Marine Boy...)

Silver birch at Eastwood 


"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)


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:
Transformers - IDW, Prime, Animated, Rescue Bots.

Currently reading:
Various Transformers books and graphic novels.

Currently working on:

Currently chuffed with:
My garden

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

Currently maintaining:

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 


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



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 


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

Radittsu, an oekaki for my birthday 04 



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

The Zone Plant from
The Zone 



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..::]
::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...)

Useful sites:

Yamato -
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

   Dj: June Special
   CD: Ambivalence

Cyber City Oedo 808

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

From Eroica with Love

   Manga Vols 1, 9, 11

Mirage of Blaze

   DVD Vol 1 (eps 1-4)

R.G. Veda

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

Twelve Kingdoms

   Anime Vol 1-12: complete

Under the Glass Moon

   Manga Vol 1, 2
Vol 3 needed

Vampire Hunter D - Bloodlust


   Vampire Hunter D Book 1

New Vampire Miyu

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

Yami no Matsuei

   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.

[::..Joules SPfied..::]

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

(Thanks, Lutra, for the quote!)

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
05/01/2003 - 05/31/2003
06/01/2003 - 06/30/2003
07/01/2003 - 07/31/2003
08/01/2003 - 08/31/2003
09/01/2003 - 09/30/2003
10/01/2003 - 10/31/2003
11/01/2003 - 11/30/2003
12/01/2003 - 12/31/2003
01/01/2004 - 01/31/2004
02/01/2004 - 02/29/2004
03/01/2004 - 03/31/2004
04/01/2004 - 04/30/2004
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
11/01/2004 - 11/30/2004
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
08/01/2007 - 08/31/2007
09/01/2007 - 09/30/2007
10/01/2007 - 10/31/2007
11/01/2007 - 11/30/2007
12/01/2007 - 12/31/2007
01/01/2008 - 31/01/2008
01/02/2008 - 29/02/2008
03/01/2008 - 31/03/2008
01/04/2008 - 04/30/2008
01/05/2008 - 31/05/2008
01/06/2008 - 30/06/2008
01/07/2008 - 31/07/2008
01/08/2008 - 31/08/2008
01/09/2008 - 30/09/2008
01/10/2008 - 31/10/2008
01/11/2008 - 31/11/2008
01/12/2008 - 31/12/2008
01/12/2008 - 31/12/2008
01/01/2009 - 31/01/2009
01/02/2009 - 28/02/2009
01/03/2009 - 31/03/2009
01/04/2009 - 30/04/2009
01/05/2009 - 31/05/2009
01/06/2009 - 30/06/2009
01/07/2009 - 31/07/2009
01/08/2009 - 31/08/2009
01/09/2009 - 30/09/2009
01/10/2009 - 31/10/2009
01/11/2009 - 30/11/2009
01/12/2009 - 31/12/2009
01/01/2010 - 31/01/2010
01/02/2010 - 28/02/2010
01/03/2010 - 31/03/2010
01/04/2010 - 30/04/2010
01/05/2010 - 31/05/2010
01/06/2010 - 30/06/2010
01/07/2010 - 31/07/2010
01/08/2010 - 31/08/2010
01/09/2010 - 30/09/2010
01/10/2010 - 31/10/2010
01/11/2010 - 31/11/2010
01/12/2010 - 31/12/2010
01/01/2011 - 31/01/2011
01/02/2011 - 28/02/2011
01/03/2011 - 31/03/2011
01/04/2011 - 30/04/2011
01/05/2011 - 31/05/2011
01/06/2011 - 30/06/2011
01/07/2011 - 31/07/2011
01/08/2011 - 31/08/2011
01/09/2011 - 30/09/2011
01/10/2011 - 31/10/2011
01/11/2011 - 30/11/2011
01/12/2011 - 31/12/2011
01/01/2012 - 31/01/2012
01/02/2012 - 28/02/2012
01/03/2012 - 31/03/2012
01/04/2012 - 30/04/2012
01/05/2012 - 31/05/2012
01/06/2012 - 30/06/2012
01/07/2012 - 31/07/2012
01/08/2012 - 31/08/2012
01/09/2012 - 30/09/2012
01/10/2012 - 31/10/2012
01/11/2012 - 30/11/2012
01/12/2012 - 31/12/2012
01/01/2013 - 31/01/2013
01/02/2013 - 28/02/2013
01/03/2013 - 31/03/2013
01/04/2013 - 30/04/2013
01/05/2013 - 31/05/2013
01/06/2013 - 31/06/2013
01/07/2013 - 31/07/2013
01/08/2013 - 31/08/2013
01/09/2013 - 30/09/2013
01/10/2013 - 31/10/2013
01/11/2013 - 30/11/2013
01/12/2013 - 31/12/2013
01/01/2014 - 31/01/2014
01/02/2014 - 28/02/2014
01/03/2014 - 31/03/2014
01/04/2014 - 30/04/2014
01/05/2014 - 31/05/2014
01/06/2014 - 31/06/2014
01/07/2014 - 31/07/2014
01/08/2014 - 31/08/2014
01/09/2014 - 31/09/2014
01/10/2014 - 31/10/2014
01/11/2014 - 30/11/2014
01/12/2014 - 31/12/2014
01/01/2015 - 31/01/2015
01/02/2015 - 28/02/2015
01/03/2015 - 31/03/2015
01/04/2015 - 30/04/2015
01/05/2015 - 31/05/2015
01/06/2015 - 30/06/2015
01/07/2015 - 31/07/2015
01/08/2015 - 31/08/2015
01/09/2015 - 30/09/2015
01/10/2015 - 31/10/2015
01/11/2015 - 31/11/2015
01/12/2015 - 31/12/2015
01/01/2016 - 31/01/2016
01/022016 - 28/02/2016
01/03/2016 - 31/03/2016
01/04/2016 - 31/04/2016
01/05/2016 - 31/05/2016
01/06/2016 - 30/06/2016
01/07/2016 - 31/07/2016
01/08/2016 - 31/08/2016
01/09/2016 - 31/09/2016
01/10/2016 - 31/10/2016
01/11/2016 - 31/11/2016
01/12/2016 - 31/12/2016
01/01/2017 - 31/01/2017
01/02/2017 - 28/02/2017
01/03/2017 - 31/03/2017
01/04/2017 - 30/04/2017
01/05/2017 - 31/05/2017
01/06/2017 - 30/06/2017
01/07/2017 - 31/07/2017
01/08/2017 - 31/08/2017
01/09/2017 - 30/09/2017
01/10/2017 - 31/10/2017
01/11/2017 - 30/11/2017
01/12/2017 - 31/12/2017
01/01/2018 - 31/01/2018
01/02/2018 - 28/02/2018
01/03/2018 - 31/03/2018
01/04/2018 - 30/04/2018
01/05/2018 - 31/05/2018
01/06/2018 - 30/06/2018
01/07/2018 - 31/07/2018
01/08/2018 - 31/08/2018
01/09/2018 - 30/09/2018
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
01/09/2019 - 30/09/2019
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

Sunday, September 29, 2013

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: , ,


Saturday, September 28, 2013

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.

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Friday, September 27, 2013

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.

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Thursday, September 26, 2013

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.

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Tuesday, September 24, 2013

[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...

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Blogger GoodTwin said...

I have XP SP3 installed, but I think I'm still running Skype 2.x Never seemed much point in updating it when it works.

We know all about cats getting their own way. When Adrian is sitting in Bella's seat, firstly she sits and glares at him, and if that fails she moans at him. Then she'll get up beside him and settle down but glare reproachfully until he moves. How dare he sit in her seat?

That is a beautiful figure - lovely glowing colours.

5:10 pm  
Blogger Joules *Dances with Haddock* Taylor said...

Thank you! I'm very pleased with him.

And as for the cats - well, they are cats. It's their job.

11:08 pm  

Monday, September 23, 2013

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.

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Saturday, September 21, 2013

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.

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Friday, September 20, 2013

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.

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Wednesday, September 18, 2013

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.

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Tuesday, September 17, 2013

...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!

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Monday, September 16, 2013

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.

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Sunday, September 15, 2013

[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.



Blogger GoodTwin said...

[thinks] My computer is nearing 10 years old, and the monitor was on the previous computer so is about 2 years older than that. It came with a 3 year guarantee which I thought was pretty good :)

10:23 pm  
Blogger Joules *Dances with Haddock* Taylor said...

That's very good going. I actually can't remember when I got mine, though I think it was at least eight years ago, and the monitor is a little older. Mine is on all day every day though, so it has had an awful lot of use (even allowing for you and Adrian both to be using yours).
It's just so bloody annoying that these things always happen on a Sunday...

10:44 pm  
Blogger GoodTwin said...

Mine stays on a lot of the time as well :)
And yes, usually a Sunday, or midnight.

I thought I might jinx mine by saying how old it was - it randomly shut down this morning and refused to reboot. It did this a couple of months ago; you take the fuse out, clean it and put it back and it's fine. Doing a back-up has delayed me slightly this morning...

8:16 am  

Saturday, September 14, 2013

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!

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Friday, September 13, 2013

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...

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Thursday, September 12, 2013

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.

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Tuesday, September 10, 2013

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.

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Blogger GoodTwin said...

What a pain. I shall send helpful vibes...

7:45 am  

Monday, September 09, 2013

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...

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Saturday, September 07, 2013

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

(One of Lin's finds...)

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Friday, September 06, 2013

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...

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Blogger GoodTwin said...

I've used a chat window with Virgin support before now which worked quite well, but sometimes there's just no substitute for being able to talk to someone. (I had the 'pleasure' of BT in Mumbai this afternoon...)
Hope it all gets sorted anyway - it's a complete maze when you have so many variants to deal with.

10:44 pm  
Blogger Joules *Dances with Haddock* Taylor said...

Not fond of chat windows - my typing is so bad and they go so fast it's embarrassing.
But I think it's sorted now. Techs very often forget that you aren't as savvy as they are and use expressions you don't know, and getting them to explain what they're on about in words of two syllables can be hard. But we got there in the end, and I have to commend Petru for his (her?) patience.
And now I know what to do if it ever happens again, which is always a good thing. I'm used to changing nameservers on accounts, had to do that a lot, but this was the first time I'd dealt with MX accounts.
Well, fingers crossed. If it still doesn't work by Monday I shall grit my teeth and get back to them.

11:04 pm  

Wednesday, September 04, 2013

Shopping. Client stuff. Gardening. Beast Hunters.

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



Tuesday, September 03, 2013

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...

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Sunday, September 01, 2013

Photos from the Kite Festival.

And Smokescreen was at Sainsbury...

Very nice figure!

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


Blogger GoodTwin said...

aw, looks sort of cuddly... :)

7:36 am  
Blogger Joules *Dances with Haddock* Taylor said...

Oh, that's perfect. Even in the series he's seen as the cute newbie, which annoys him as he thinks he's a great warrior and wants to be a hero!!

10:45 am  
Blogger GoodTwin said...

hee, I have good instincts... :)

6:35 pm  
Blogger Joules *Dances with Haddock* Taylor said...

You most certainly do!

10:28 pm  

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