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tamaranth

October 2017

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The ravelled sleave of care

Oct. 20th, 2017 10:03 pm
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[personal profile] desperance
Day Minus One: and all the worst is behind us, except for the actual feeling rotten. Hopefully.

We lead a temperate life, those of us who go down to Mexico in search of healing. Karen had her last round of chemo today (yay!) and we've just been quietly in the apartment since. She went to bed not long after nine o'clock; now it's barely an hour later and I am prone to follow. Not all the way, for we are obliged to occupy separate beds for the next couple of weeks, until she has at least the semblance of a normal immune system again; even my poor teddy bear has been exiled from her company, despite his sterling work in keeping her safe from demons of the night.

Karen ate most of a bowl of soup for dinner, but I'm not sure how much she's actually kept down. Tomorrow she gets all her billion stem cells back again, which is Day Zero and the start of her whole new life (hereinafter she gets to celebrate two birthdays a year, and who could deny her that?), but mostly she's just going to be feeling dreadful and not at all like partying.

Indeed, there's not going to be any partying for a while. She'll be in neutropenia, where she hasn't enough white blood cells to fight off infection; she stays in the apartment and eats astronaut food, wears a mask, doesn't get to kiss me. People say that Netflix is her friend, but tonight she was too tired to watch TV, and the fatigue is likely to get worse rather than the other thing. I have no idea; we'll find out. And my own prospects likewise: I don't know how I'll get through these next weeks, for it all depends on her. But at least the worst of the treatment days are behind us. I'm seeking comfort in that. And going to bed as soon as I finish this bottle. My doctor was rather shocked to be told that I drank half a bottle of wine a day; let nobody tell her that these days it's a bottle and a half at least. At least. It's easier to be accurate, when Karen's not drinking at all; but it's harder to be abstemious, when there really isn't that much else to do. Wine helps, y'know? Of course you know. Who do I imagine I'm talking to?

Update: Karen Wins The Day!

Oct. 19th, 2017 03:56 pm
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[personal profile] desperance
So everyone came out of the apheresis room, and was hungry, so we went across the road to a local restaurant for lunch. And were summoned back precipitately, because they had counted everyone's stem cells and the results were ready. Hearts in each other's mouths, back we came - and Oystein had 500 million, which was plenty, and Rafa had 750 million, which was awesome. And Karen had over 1000 million, and is best. Which of course we all knew already, right?

So now we're back in the chemotherapy room, being chemotherapised to kill off the immune system all but entirely. That's the rest of today and then tomorrow too. Saturday, she gets all her thousand million stem cells back, under firm instructions to get stemming, or celling, or whatever it is that they do.
Day Minus Two: and this is the big one, as far as treatment is concerned. We have been told to expect to be in the clinic for about twelve hours.

At seven this morning, Karen was allowed a breakfast of one (1) glass of water, one (1) granola bar, and one (1) piece of fruit with no added yogurt. Fortunately, I was allowed all the coffee I wanted.

At nine we piled into the team bus, and came to the clinic. Access ports were opened, blood was drawn, and we sat around for an hour while they tested that for stem cell wealth.

Once satisfied, they are taking us - or at least the patient half of us - into the apheresis room, to be attached to a machine for the next four hours. Their blood will be slurruped out of them, and the stem cells fished individually (I like to think) from the blood before it's pumped back in again. Karen is rated for 117,000,000 cells. Which is quite a big number, and I want to know how they count 'em.

After that comes five hours of chemo, also through the port. Then they take us home.

Karen's been connected up, and we caregivers are not allowed into the apheresis room. So guess what I get to do for the next four hours?

Uh-huh. Fortunately, while we were making our wills and giving all our worldly goods into the possession of a trust (The Trebizon Trust, did I mention? I am convinced that in a few hundred years it'll be this megacorp, dominating human space if not in fact the galaxy), our lawyer and I had a cheerful talk about how The Count of Monte Cristo is a masterpiece, and I thought, "Ooh..."

So I'm halfway through that, and there's enough reading left to keep me happy for a day or two to come. After that, though, Lord only knows what I'll turn to next. Suggestions of long, familiar comfort-reads available on e-book will be gratefully received.

Better luck next time

Oct. 19th, 2017 04:01 pm
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[personal profile] flick
We went to see a horse this afternoon. He was a very sweet lad, owned by a teenage girl who's too busy with GCSEs.

The only thing that I didn't quite like was that he wanted to run off in canter: he came back ok when I asked him too, but he had a stronger bit than I'd like which makes me worry what he'd be like with a gentler one. (He wasn't very keen on standing still, either, but then I realised that he was only being fidgety when he was by some plastic in a partly-built drainage ditch next to the school, and later found out that it was only put there yesterday so actually he was doing amazingly well with it!)

Unfortunately, it turns out that he doesn't like men much: dad had mentioned that he wasn't too keen, and when Mike got on him he started getting nervous, which made Mike nervous, which made the horse more nervous, which.... He didn't actually do anything dangerous, but he also wouldn't do what he was being asked to.

Ah well. We will find something eventually, right?

Jo's doing much better now that she's got a t-shirt on and can't scratch. Back to the vet tomorrow to have the stitches out, and then soon she'll be able to have proper walks (we hope: she's getting a bit bouncy)!

They also serve who only

Oct. 18th, 2017 02:39 pm
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[personal profile] desperance
As I write this, Karen’s in surgery. By the time I can post it - for I have no wifi at this hospital - we’ll be back at the apartment, and she’ll be fine. Drowsy, maybe. It’s a minor procedure, to connect a port to her bloodstream so that she can be a cyborg for a few days; local anaesthetic and a sedative, no more, but they say she’ll go to sleep.

We have a room that is ours for the duration, and all I have to do is sit in it and wait. Half my task here is waiting. (I have never liked waiting, and do it poorly.)

Outside our room in one of those windowcleaners’ cradles that hang on cables from the roof. Two men are in it with all the tools, and they are doing all the things to the wall at my back: hammering, sawing, drilling. It’s like being in the apartment, transposed to a minor key: for there they are building another tower block just next to ours, and that affords us all the noises of major construction.

I am in a weird mood, I find. I feel ... pent. Potentially eruptive. Popacatepetl in miniature. It’s just the waiting. Karen will be fine, and so will I.

I’m rereading an old favourite novel, Elizabeth Lynn’s “A Different Light”. I still hope to meet her one day, for I know she’s local and we have friends in common. (I’m also rereading “The Count of Monte Cristo”, though I have no hope of meeting Dumas. That’s on the other Kindle, back at the apartment. Reading different books on different Kindles may seem perverse, or contraindicated, but really it’s just about power management. This one, the original, a full charge lasts for weeks; t’other is a tablet-in-embryo and I only get a few hours out of it, less than my phone even.)

I thought I’d be doing more work than I am, but apparently a man can just read and shop and cook and watch TV. Maybe after this week is over, when the procedures are behind us and Karen’s just apartment-bound in neutropenia, I’ll find the mindspace again. These next few days are going to be rough: apharesis and chemo and then at last the transplant. At the moment she’s in a lot of pain - or would be, but for the shots - which they tell us is a good thing, a sign that the process is working as it should. Her bone-marrow is sending lots of stem cells out into her bloodstream, ready to be harvested, yay: but this is a painful process, and her bones ache. Tonight’s going to be the worst of that, and she’ll have the discomfort of today’s operation to deal with also. Plus a lot of stress about tomorrow, when we’ll be all day at the clinic.

Now there are weird noises happening just outside the door. Power-tool of some kind, I think. I’m not going to look. They said I can go down to the cafeteria and get some coffee, but I think I’m just going to sit here and wait till Karen gets back.

life's a beech

Oct. 18th, 2017 06:15 pm
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[personal profile] lamentables
We had the weird weather on Monday. The one where the sky was so full of sand from the Sahara and wood smoke from I-forget-where, that it was dark for most of the day. The sun was a flat red disk, just the way it is in polluted Asia. Perpetual sunset from sunrise to around 3pm. The mismatch between the angle and colour of light was disconcerting, as was the mismatch of darkness and warm wind. At yoga everyone was unsettled and we never achieved the usual atmosphere of calm and focus. I was so disconcerted that I didn't even try to photograph it.

Tuesday was gloriously bright and sunny, but I was stuck indoors in a meeting from 9am to 1:30pm. I had nobly agreed to do some work with the managers from the charity at which I used to be a trustee. They are both lovely, so it wasn't too much of a chore. It was draining though, performing and thinking out loud for two people for such a long time. Afterwards I went into town to the health food shop. I did need to buy stuff, but the shop is becoming a convenient way to treat myself. My loyalty card is rapidly filling up.

Today we're back to proper autumnal weather - gloomy, wet, and much colder - and I had to take Percy for a walk in it. He seemed quite cheerful about it all.

Normal autumnal weather #oftheday

My gardener doesn't seem to mind the weather and has demolished most of the front garden today. It's great to see the beech trees without lots of grass and weeds choking them, and I'm looking forward to the gardener planting more of them to fill the gaps and make a decent beech hedge all round the front.

Today is the usual last day of my working week, and we're shortly fleeing the country for a fortnight. No more work for me until 6th November. Hurrah!
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Day Minus Four, and this is the last of the easy days we get, this side of the countdown. Well, they're all fairly easy for me, obvs: all I have to do is shop and cook and wash dishes and keep an eye on Karen. But we've had a week of largely being in the apartment with no calls on our time; she's had injections morning and evening (when the doctors come to us), a regime of many pills, and that's been it.

Tomorrow morning, we go to hospital for a surgical procedure, to fit Karen with a port below her clavicle, a direct line into a blood vessel for both input and output. Thursday they tap her precious bodily fluids for a few hours, to filter out 117 million stem cells; then they immediately turn the tap the other way and pump in more chemo. And more yet on Friday. Saturday is Day Zero, when her stem cells are returned to her to start restoring an immune system, hopefully one with better discipline, that won't be trying to eat her hereafter.

These few days are going to be the hardest, by the doctors' own admission. After that it's a couple of weeks of recovery in more or less isolation. If you're curious, look up "neutropenia". Karen gets to eat astronaut food and/or very well-cooked meat & fish. No salads, no fresh veg, no fruits. We wear masks, and she probably doesn't leave the apartment. She probably won't want to.

And then we're done, or at least they're finished with us. We come home (and trust me, you have no idea how attractive those words sound), and spend the next year rebuilding Karen's health. Lots of home-cooked food (hah!), lots of rest. A degree of care in social contact [get your flu shots, people! Herd immunity is going to be our friend, for the foreseeable future]. An ongoing drug regime for a while, but nothing onerous. Oh, and making friends with the cats again, because we will smell of the vet.

Ally Pally

Oct. 17th, 2017 05:58 pm
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[personal profile] lamentables
Last week? Well, most of it was pretty ordinary. Wednesday was a little hectic because I'd scheduled back-to-back appointments in different towns. Dropping off some paperwork for a long-standing client, I had a quick catch-up with his wife, and ended up saying I'd love to see the photos of their daughter's wedding (truthfully, I have no interest in wedding pics). In fact it was quite lovely to share the mother's joy and see how very happy everyone looked on the day. And it's a family who has repeatedly been through very rough times, so it was particularly poignant to share that happiness.

On Thursday I had a big day out with my dyebuddy, J. We rendezvoused on the first off-peak Chiltern line train to London and made our way (not by the most efficient route) to the Knitting & Stitching Show at Alexandra Palace. A free shuttle bus turned up just as we stepped out of the railway station, which was jolly good of it, and I loved the view we got on the short drive, especially the last, elevated section where you're looking down across London.

View #oftheday #allypally #alexandrapalace

The first thing we needed to do when we arrived was to eat. And oh my, the catering at Ally Pally is like taking a step back to the 1970s. We could only find windowless, underground eating places -with black tablecloths adding to the gloom - where the options made little concession to people with allergies and a preference for not eating meat.

The show itself was disappointing. For ages we genuinely thought that we were wandering around the edges and failing to find the main event, but no, that was the main event. It was just vastly smaller than the Festival of Quilts at the NEC, and vastly less imaginative, passionate or cutting edge than the fabulous Fibre East.

The one thing that made show itself worthwhile was a substantial display of work by Diana Harrison. I've seen a little of her work before (at BMAG's Lost in Lace exhibition a few years ago) and found it interesting. Last week, seeing a lot of the work together, and with the benefit of having done rather more printing and stitching myself, it made a huge impact. J loved it too. We enthused at the artist, signed her comments book, and I bought her catalogue from a previous exhibition.

Roof #oftheday #allypally #alexandrapalace

The great thing is, even though the show didn't live up to expectations, we had a lovely day. We don't often get chance to hang out like that, the sun was shining, everyone is friendly and comfortable at these events, and I was on my feet all day (walked about 8km) without trouble from the tendons.

On the way home, looking at the trainline app, I noticed that at Banbury the train behind us was going to overtake the train I was on, so I could switch and arrive 20 minutes earlier than expected. It all happened on adjacent platforms, with no rush, and I was so proud of myself because trains and platforms and timings all tend to induce stress and panic. I love living in the future where I have so many tools to make life easier and minimise the fear.

On Thursday my new gardener worked some more magic in the back garden and it's now looking like a place one might want to spend time, even though his work is very much at the beginning. (This week he has been attacking the front and letting in the light - very exciting.)

On Friday I discovered The Good Place and didn't really stop until Saturday evening when I had run out of episodes to inhale. It's lovely. And smart. And darkly charming. And contains many actors I was delighted to find on my screen. I am more than a little in love with Janet.
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Reading books I skimmed to write an essay. I would alter a sentence or two, having read these two.

These follow on directly from the previous books in chronological order, with the usual cast of recurring characters - O'Mara, Prilicla, Murchison, along with a large cast of aliens, who may be minor characters but do get proper introductions and speaking parts. Conway interestingly, is frequently mentioned, but almost never actually there, and even when he is there he doesn't get to speak.

The Galactic Gourmet 
The Galaxy-famous chef, Gurronsevas - "a massive six-legged alien of considerable dignity", driven by ego and overwhelming pride, arrives at Sector General to improve the hospital food. After creating certain entertaining kinds of chaos, and making himself largely unwelcome on the Station, he is seconded to the ambulance ship Rhabwar: it is not clear whether he is supposed to be useful or is just being quietly removed from the Station while things settle down. In the event he finds that, like his medical colleagues, chefs can employ professional concerns to bond with individuals of other species, and help to improve first contact situations gone somewhat awry.

This was entertaining, in a slightly repetitive fashion: Guerronsevas is a large, ponderous and rather rigid alien learning better, the third in a row, after Cha Thrat and Lioren. Overall there's a good idea here, and White has fun with the standard tropes of Sector General, but it doesn't feel like essential reading.

Final Diagnosis
A change of tack with this one, with protagonist Hewlitt, an Earth Human male, arriving on Sector General as a patient to puzzle the hell out of everybody: the Diagnosticians - including Conway and Thornnastor - can find no physical cause for his enigmatic symptoms; but Lioren, now Padre, and Lieutenant Braithwaite of O'Mara's office can't find anything psychogically wrong either. Hewlitt slowly wends his way through his own and Sector General's pasts, visiting with Hudlars, Kelgians, Chalders and Telfi on his way to a really, really neat ending that pleases me enormously as an idea.

Hewlitt is a rather stuffy and tedious character whose pale, stale, maleness was trying at times, so this was a book that dragged somewhat in the reading; and White still has to explain ideas rather than showing them. I enjoyed meeting the many aliens, and the cat, and I'm glad I read it.


Short Film News

Oct. 16th, 2017 10:36 am
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[personal profile] bugshaw
The Treehouse film I made last summer is premiering at St Neots Film Festival on Wed 8 Nov!
http://stneotsfilmfestival.co.uk/
I'll be going along with my big Film Premiere coat :-)
It will be made public on vimeo the next day and I can post it here if anyone's interested.

Dish Life (short with children being stem cells in petri dish) has made New York Times' Ten Things To Do In NYC This Week list (For Children section) - the director and scientist are over there now and having a great time.

In very much other news...

Oct. 15th, 2017 06:43 pm
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[personal profile] flick
Is it just me that's feeling faintly worried about the whole Harvey Weinstein thing?

It does, very much, sound as though the man is thoroughly unpleasant, and will in the fullness of time be prosecuted and convicted for the things that he's being accused of.

But he's been thrown out of BAFTA and the Academy Whose Full Name I Forget, and they're talking about stripping him of his honours, when that hasn't yet happened.

What about that innocent until proven guilty thing? Look at the whole Bramall / Brittan thing: it seems unlikely, but what if the outcome of this is the same?

Pooch update

Oct. 15th, 2017 05:57 pm
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[personal profile] flick
We took Jo to the vet this afternoon, for a check up and to get the lab results.

The nipple is healing beautifully, but she has managed to get a bit of an infection in the wound on her side, so now she has antibiotics. We're carrying on with Pooch Corset for another day, after which it will hopefully have dried up and we can switch to a t-shirt instead to let it get more air while still being a bit protected. She's going back on Friday to have the stitches out, unless something else happens before then. Although it's not healing quite as well as the vet would like, it is knitting together ok, so it shouldn't be a problem as long as we can stop her from getting at it.

The lab results were about the best we were hoping for: the lumps did have (cancerous) mast cells, but the one on the nipple is definitely low-grade and the one on her side probably is as well (based on the type of lump it was, as it wasn't possible to test it properly. There is a test that will give more definitive results, but it's £200: we're thinking about it). On the down side, best practice is to remove 10mm of skin all around a mast cell tumour, and they didn't do that much at the time; opening her back up is an option but I don't think we're going to do it.

The vet did suggest an option of doing an ultrasound scan all over her abdomen, to look for signs that it's spread internally, but she wasn't really pushing us to do it given that the chest x-rays were clear. T'internet also tells me that lymph node biopsies are also an option, which I might mention when we're there next week.

So, she's doing ok from this time around, and we're probably just going to carry on as usual, running to the vet whenever we find any kind of lump on her.

Negative time, positive vibes

Oct. 15th, 2017 10:14 am
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[personal profile] desperance
Good morning, from Day Minus Six! (I actually nearly typed Seven there, which would have been wrong. Happily I had the wit to check. These negative hours pass inconsistently, I find, and I lose my place in the calendar.)

This morning I learned in Mexico what had eluded me for five years in California: that not only does the Bay Area have an active cricket league, but that Sunnyvale has a cricket club which is a bright star in that league, and has a dedicated permanent cricket pitch a short cycle-ride from our house. I may have renewed sports fandom in my future. Ah, the crack of willow upon leather: how I have missed thee, my Hornby and my Barlow long ago!

Karen had a couple of utterly miserable days post-chemo, constantly sick and not at all interested in food. Ginger ale and water saw her through, with the aid of ginger candies; yesterday she had oatmeal for breakfast (how right was I, to bring steel-cut oats from California? *preens self*), a little soup for lunch and a little chicken and brussels sprouts for dinner. This morning I am making French onion soup and croutons, and we will see how the day plays out.

They're odd, these days. We're very detached from the world in here, and with Karen having been so sick we're a little detached from our own group as well. Everybody else had a roof-party yesterday, with real Mexican food and music; we lingered below in the backwash. We see doctors morning and evening, with Karen's shots; I go to the store as often as I can make excuse for it; otherwise we hang out in here, reading and dozing. We haven't even been watching much TV, though Netflix is a saviour and "Breaking Bad" turns out to be really rather good. I've been working on the Crater School - oh, and cooking, obviously - and I have The Count of Monte Cristo on my Kindle. An old friend, and always reliable. (Actually I think it a work of genius; our lawyer and I bonded over that, last month.)

With that first round of chemo having been so hard on Karen, we're anticipating a difficult second week, because the next round will be worse. But we're a quarter of the way through this whole process now, so that's a thing. And Karen will still be weak and immunocompromised, and it may be a year before she's fully recovered, but nevertheless. Our friends are awesome, and I'm there to do all the things, and with any luck it will all prove worthwhile. *nods affirmatively*