rmc28: Photo of me shortly before starting my first half-marathon (Default)
Yesterday I did something I haven't done in weeks: unloaded the dishwasher.  And then I had to go have a lie down to recover from it.  I am definitely well enough to really resent how much more recovery I've got ahead of me.

I managed quite a lot of shopping from my laptop yesterday: not really for the stupid Black Friday stuff, but because it was the first day I've been up to sitting up AND thinking for long enough.  Today I am trying to catch up on the household accounts and some of my email.  And then I really must try to get some study done: I negotiated an OU deadline extension as soon I went into hospital, but the extended deadline is coming up.

My next outpatient appointment is Wednesday - a whole week since the last one, it feels almost like a holiday.  I was supposed to see the consultant in clinic on Tuesday 1st, but a) it got moved because of the junior doctor's strike and b) my blood counts weren't up enough for the test that needs doing before I see the consultant again, so it'll probably get moved back again.

I've watched the Captain America: Civil War trailer a couple of times and it's possible I won't hate it? At least I should be fine to go to the cinema well before May.  I'm also planning to watch Jessica Jones once I'm less tired.  (When I'm tired I mostly don't want to watch film/TV at all, or at least only familiar things.)

rmc28: Photo of me shortly before starting my first half-marathon (Default)
I realised it's been nearly a week since I got home, and I'm fine, I've just mostly been in bed, either asleep or binge-reading fanfic.   I get up for meals, and to help get the children out in the mornings, and to fetch C from after-school care three times a week, but then I usually need to go back to bed afterwards.

I've been in to the day unit last Thursday and today, and it seems this exhaustion is normal for this stage of the chemo cycle.  (This is still the Evil Blue cycle - I've not actually had any of it for nearly 3 weeks,  but it clearly did a really thorough job on my blood cells which have fallen much farther than the previous cycle.)  When I get better, I have a biopsy to look forward to, and then the fourth and hopefully last round of chemo.

Due to lack of communication, Tony and I both bought a copy of Minions, which Charles saw in the cinema earlier this year, and adored. The four of us sat down to watch it on Saturday afternoon and it worked really well as a family film.  I don't think I want to watch it again but it was fun to watch once, especially with the children both enjoying it.

Otherwise, I'm beginning to think about When Treatment Is Over, and what normal is going to look like for the four of us when we get back there.


2015-11-17 21:35
rmc28: Photo of me shortly before starting my first half-marathon (Default)
Back in bed, but at least it's my own.  So much stuff to catch up on .... tomorrow, and maybe the rest of the week.  I have to go back in to the day unit on Thursday anyway.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
I am all packed and ready to go. Tony came earlier and took my laundry away. The pharmacist has been in to check my medicine supplies. But I need blood and platelets before I can go & they haven't come up from the blood bank yet.

Anyway my lovely nurse today is keeping me updated and I have all the internet on tablet or phone so it could be far worse. (The doctor said it's nice to have patients who get better and go home, which makes me think she's got a few too many of the other kind this week.) Looks like I'll still be here at suppertime.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
 My temperature has been stable for nearly two days now, and the infection marker that was really high has come down. If my temperature remains stable overnight I should be able to go home tomorrow. They may top me up with transfusions first, so it won't be first thing, but I've not got much to pack.

As usual, believe it when the discharge bag arrives and ward exit is actually achieved.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
It asked me to translate "What does the fox say?"
(and I was half way through the sentence before I realised, so it was extra funny)

There is someone on this ward who shouts very loudly at intervals, from what sounds like the far end of it. I'm impressed by their lung capacity but not their doing so round the clock.  I'm still in my own room but it's not soundproof, I get to hear a lot from the kitchen across the corridor and several of the call bells including my own.  

I had a very restful weekend reading and watching fun things, and my temperature seems to have finally stabilised. I'm currently waiting for today's doctor(s) to see what else needs to happen before I can go home.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
 And I had a lot of misc thoughts I was going to write up today, but then my reading page clued me in to the horrible news about Paris, and it seems too tone-deaf to write about fantasy violence when the real thing is so close.

From Cambridge I can get to Paris quicker than to much of my own country, including my mother's home town in Yorkshire and my aunt's place in Wales. Except I can't actually get to any of them right now because I'm stuck in hospital wired up to an antibiotic drip, and there is literally nothing I can do about nearby terrorism and the prospect of scary responses to it, except be upset and scared, and I've had too much of that lately.

This is why I try not to read news in hospital :-(

I think I'll go back to streaming Dr Who episodes from when I still liked it (first season with Matt Smith).

rmc28: Photo of me shortly before starting my first half-marathon (Default)
 I was hoping to get away without this happening, but I caught some kind of bug while my immunity was very low, and got admitted on Tuesday morning with a fever. They got me on IV antibiotics & paracetamol very quickly and brought the fever under control, now I just have to wait for the substitute immune system to kill whatever it is.

I'm in reasonable comfort, sleeping a lot (today's the first day I've felt up to reading or writing). I'll be in at least 3 more days but maybe only that and hopefully not much longer.

I can feel another nap coming on zzzzzz
rmc28: (bluehair)
A recent conversation (the counterparty can identify themselves if they choose):

"So what you're saying is that cancer is basically like tribbles?"

"Evil tribbles, but yes."

(We later went on to talk about whether Spock's blood was blue or green, and I couldn't remember without looking it up, which probably makes me a fake geek girl or something.)

stuff about treatment and side-effects )

rmc28: Photo of me shortly before starting my first half-marathon (Default)
Taken from [personal profile] falena :

On the nightstand: Bedside lamp, thermometer, a notebook in which I dutifully record my temperature 4 times daily, a box of tissues, and a charger for my phone.

At the theatre (or from the couch): Nothing really; I can't go out in large groups of people at the moment, but we hadn't been to see anything at the theatre for some time.  The Arts Theatre's practice of adding compulsory booking fees on top of the advertised prices annoys me.

On the small screen: Mostly children's things: Nico is very fond of The Gruffalo's Child (on DVD) and Melody (on iPlayer), and will ask for My Neighbour Totoro about once a week.  I've caught some episodes of Elementary when Louise has been watching it.  Now I apparently can concentrate for the length of an episode, I'd like to finish Daredevil season 1 before Jessica Jones starts.

In my ears: I've been listening to my running playlist on shuffle when I want to develop some get-up-and-go.  I'm still very slowly working through Un Cadavre de Trop when I want to sleep - my French comprehension is so poor that most of it just washes over me, but it gets my brain to stop spinning.  I have a whole backlog of already-bought audiobooks which I'd like to listen to before getting the Ancillary Mercy audiobook and/or rejoining Audible.

Around the house: I have ambitions to tackle the pile of paper waiting to be filed that accumulated while I was away, and to sort out the gloves, scarves and hats, but they might remain ambitions for another few weeks.  Over the back fence, builders are at work on a block of flats and quite entertaining to watch.

At work: n/a

In the kitchen: Not really my domain! Louise has been clearing out the kitchen cupboards of ancient and out-of-date food and spices.  The corner cupboard is much tidier now, and she's identified a lot of flour that needs using up.  So we'll have to turn that  into bread in the next month (the hardship).   I think we're also oversupplied with reusable takeaway containers and should have a cull.

In my closet:
I'm mostly wearing jeans / cords and assorted boring tshirts and hoodies.  The goals are: comfort, discreetly covering my line, not minding if I accidentally bleed on what I'm wearing.

In my mailbox: A couple of bank statements, a postcard from an elder cousin, and a reminder from my dentist.  In a box on my desk, a whole lot of postcards and cards from lovely people while I was in hospital.

In my cart: Most recently bought was a set of folders for tidying up the children's DVDs, and my next OU course.  Today I'm planning to send off my Fairphone to get the giant crack on the screen fixed at last.

On the calendar: Lots of visits to the hospital this week for me. Charles has a Halloween party on Friday and the gardeners are scheduled to come next week and make the garden useable again. Louise goes home towards the end of next week :(

rmc28: Photo of me shortly before starting my first half-marathon (Default)
Today's hospital visit confirmed that round 2 is done and I am starting round 3 of chemo next week, preceded by a clinic appointment.  My bloods are good, no reason to delay, I am all for getting this over and done with as soon as possible.  So I have 6 appointments in 7 days starting next Tuesday, in case I wasn't getting enough of the hospital.

In theory that leaves only one round of chemo left and then the vital biopsy test to confirm "molecular remission" with PCR.  So I'm halfway?

I'm still trying to get a handle on my energy levels: starting at the weekend I had 4ish days where I struggled to do more than lie down and read fanfic, 1 day of getting the OU assignment done on time (turns out, I'm still deadline-driven, even when ill).  Today I had the fidgets after a long time sitting around in E10, so I walked from the hospital to the station cab rank to see if I could.  And yes, I was tired when I got there and had to do a lot of sitting down after I got home, but that's the furthest I've walked since 7th August, and a lot further than anything prior.

If I spend the next four days mostly in bed tired, I'll be less ambitious about walking distances :-)

Change is coming as Louise is going home on 5th November.  Her housesitter gave notice, she has a bunch of things to sort out at home, and I am doing so much better now that I think we will be okay so long as I don't catch anything that sends me back into hospital.   This chemo cycle has gone so much better than the previous one that it makes me feel quite optimistic.  Tony and I will have to put a bit of thought into re-dividing the household labour, but that's not a problem, just a task to get done.  We'll have some help most weeks from my mother, and if it turns out that we really aren't coping even so, we can ask Louise to come back.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
I'm now nearly three weeks into this chemo cycle; the one in the hospital lasted a bit over five weeks, but direct comparisons are hard because last time I was much more ill at the start, and the dosing stage took place over 7-8 days rather than the 4 this time around.  

My cell counts haven't fallen very far this time; the nurse monitoring me yesterday said this can happen sometimes but she is going to get advice from a more experienced nurse and/or the consultant in case there's anything we should worry about.  I'm back in again Monday and Thursday next week for more monitoring anyway.

I seem to have more energy and stamina and I'm gently exploring just how much.  I've successfully walked to and from the local shops several times, and have done one longer walk without apparent ill-effects.  I'm doing more at home, helping more with child supervision when they are here, and tackling some of the sorting-out jobs, like putting away outgrown clothes from both children and getting out just-grown-into clothes for Nico.  I've even been mostly keeping up with the OU course that started two weeks ago, and hope to hit the first TMA deadline (on Thursday, argh).

However, I'm still easily tired, and not always a reliable judge of whether I'm going to fall asleep when I sit down, or I'm good to do more studying / sorting out / reading.  I still nap more days than not, and I still need to rest a fair bit each day.   I have a mild cold which I've had for about two weeks and is very very slowly getting better, and I need to be careful not to catch anything really nasty.    I still get out of breath walking upstairs, which is pretty much where I was a week or so before diagnosis. 

So overall: much better than I was in hospital, better than I was after the first flattened day or two at home, but a long way yet from "normal for me".
rmc28: Charles facepalming eloquently (facepalm)
First, a picture of me, showing off my new SHAWL (made to order for me by [personal profile] killing_rose / RavenYarnworks - it is the cookie monster shawl on the Etsy page, only with different yarn):

Showing off new shawl

Some closeups of the knitting (click through for bigger photos if you are keen on this kind of thing):

Shawl detailShawl detailShawl detail

And finally, two lovely photos from my dad's visit on Saturday. The children were persuaded to pose together to update the background photo on my dad's tablet from one of Charles holding a baby Nico:

Happy siblings posing together

My dad spent some time helping Nico paint, to both their apparent satisfaction:

Painting together

Charles was also kind enough to supply me with a new icon. I seem to be quite good at provoking his facepalm lately; we are clearly reaching "MUM, you're so EMBARRASSING" territory.

rmc28: Photo of me shortly before starting my first half-marathon (Default)
I read half of Ancillary Mercy in my outpatient appointment in E10 and the other half at home earlier this evening.  I adored it.  It is a very satisfying conclusion to the trilogy; it had me metaphorically on the edge of my seat at times; and there was cuddling.  I APPROVE.  I will probably reread it shortly just to revel in it more slowly.  I should go see what kind of price I have to pay for Adjoa Andoh to read it to me as well, as I've adored her reading of the first two.  (Answer: too much, and it isn't available for another day anyway)

Outpatient appointments are going well so far: last week I had chemo every day Tuesday-Friday, and this week and next I have monitoring appointments Tuesday and Friday.  The day unit can't organise the week after next for me yet because it's dependent on the monitoring results ...

(more about appointments behind cut because medical detail)

Read more... )

It has slowly been sinking in since last Monday just how wonderful, delightful, etc it is to have got into remission, to be on the standard treatment path with its very high chances of success, to be most definitely winning.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
Charles is nine today, and also Ancillary Mercy is released.

I have an outpatient appointment today and I said a few days ago "oh, I can read AM during the appointment ... oh, but it's at 3pm, I'll probably have finished the book by then".  Ahahaha.  I was up a bit too late last night and got up a bit earlier than I would have liked to be with C and other household members while presents were opened, and promptly slept another four hours or so.

So I am about to depart for the hospital with AM unread.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
And I'm still here[1], hurrah for medical research[2] and care.

A good day I think to post the updated How You Can Help list:.

Direct help
  1. Offer me lifts to/from Addenbrookes. I'm going to have a lot of outpatient appointments there between now and February or so, potentially any day of the week. Of the half-dozen so far, one was an hour, one was 3.5 hours, the rest were about 90 minutes. A number of lovely people have already offered and helped, but if you have a car and are willing to add yourself to their number, email me with a rough idea of whether there are typical times you could manage and how often you'd be willing to do so - and also whether you'd want to do a one-way trip or to wait around and do both ways. (I get reduced car parking as an outpatient, if needed.)
  2. Take one or both children out to play for an hour or two at weekends, e.g. at the local playground. Best arranged by emailing me.
  3. Invite Tony to things: pubs, cinema trips, parties, etc. I can't do these things right now, but he can, and could use a bit more social time outside the house. Best arranged by emailing him.
My preferred email address is rmcf @ cb4.eu
Tony's is dot @ dotat.at

Indirect help
  1. Financial donations to the following:
  2. Blood donation. I've already had multiple platelet and red blood cell transfusions and will need more over the coming months. (This comes with the caveat that not everyone can or should donate blood, and I strongly feel that no-one should feel guilty for not doing so.)
  3. Bone marrow register.  (Anthony Nolan Trust runs one, as does the NHS; they work together).  I should not need a bone marrow or stem cell transplant ... but if I do, the registers increase my chance of finding a match.  This comes with the same caveats as blood donation, only even more strongly because marrow or stem cell donation are a rather more serious commitment and procedure.

I also want to thank everyone who responded with pictures and gossip and visits etc to the list Tony posted for me soon after I was first admitted. I was greatly comforted, and very touched.  I feel tremendously grateful for the wealth of friendship and family support we have had revealed.

[1] The morning the consultant let me go home, he said cheerily "These days, most deaths from this cancer have happened by this stage if they're going to."

[2] This
paper summarising "state of the art" treatment for APL, i.e. what I am currently following, was published in 2006.  Twenty years ago my chances would have been far worse.

rmc28: Photo of me shortly before starting my first half-marathon (Default)
Cambridge people: can you recommend to me?
  • a window cleaner
  • a general handyperson (competent with drill and screwdriver, simple painting, etc)
  • an electrician
rmc28: Photo of me shortly before starting my first half-marathon (Default)
  1. They got (just) enough material from the biopsy.
  2. They were able to confirm I am in remission (much reduced quantity of cancer cells).
  3. All my blood counts are back to normal.
  4. I start my next round of chemotherapy tomorrow, in the day unit E10.

This round will be four doses, ideally on consecutive days, but that will depend on capacity on E10. They would only give me tomorrow's appointment today.

I will then have to go in regularly for monitoring over the next few weeks as my blood counts fall and recover again, until it's time for another biopsy. If I'm careful and avoid catching anything nasty, I should be able to stay home throughout.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
Thursday's appointment in the day unit (E10) was long and tedious.  I was paranoid about traffic, so we arrived far too early, and then of course my appointment started late, and then there was discussion about me needing yet another prescription, so we had to wait until that had been phoned down to the pharmacy before we could go.  Louise was incredibly patient and good-humoured throughout.  I met and caught up with several fellow-patients from my time on D6, including the Other Rachel, whose hair is still delightfully purple.

The biopsy was both the worst and best yet - most painful so far, but on the other hand they gave me gas+air which made it considerably more bearable.  A+ will ask for again.  I had cunningly packed some of Hotel Chocolat's finest offerings, courtesy of a couple of generous friends, to restore my good humour afterward.  When we finally escaped, I got burger and chips for a late lunch to complete the job.

I was in a fair bit of pain from the biopsy Thursday and Friday, but I have prescription painkillers "to be used as needed" and did so. I spent much of Friday in bed reading, but was pleased this morning to find everything considerably better, and movement much easier.  I even spent a couple of hours today on gentle admin at our desktop computer (bringing Calibre up to to date with recent acquisitions, correcting metadata on LibraryThing, that kind of fun), and another hour on my new OU course.  It doesn't officially start for a few more days, but I thought I'd take advantage of feeling energetic while it lasts.

We watched My Neighbour Totoro for family film yesterday evening, at Nico's request.  I think the sick mother plotline sails over Nico's head, but not the rest of us; bit of a weird feeling watching it this time.  (Not a surprise; I've seen the film tens of times and know pretty much every line; just a bit weird.)

I am trying to wait patiently for Monday's appointment, and hoping very hard for better data this time.
rmc28: (books2010)
The good:

Ghosts of Home by Sam J. Miller
What if houses had spirits that needed to be placated when they were left empty (say, by banks evicting people for non-payment of mortgages in a credit crunch)?  Who gets employed to do that kind of work?  I really enjoyed this story, and have put it on my Hugo placeholder list for next year.

Civilization by Vylar Kaftan
Choose your own adventure political system.  I thoroughly enjoyed this, thought it seemed vaguely familiar, and then realised I'd read it in the Glorifying Terrorism anthology where it was originally published.

Given the Advantage of the Blade by Genevieve Valentine
I didn't precisely enjoy this story about all the fairy-tale women you can think of having repeated massed fights - I found it too depressing - but I think it's cleverly done and constructed, and other people may like it more.

Read more... )
The book reviews have me convinced I don't want to read Wesley Chu's Time Salvager or Ken Liu's Grace of Kings, but I probably do want to read N.K. Jemison's Fifth Season and Daniel José Older's Shadowshaper.

rmc28: Photo of me shortly before starting my first half-marathon (Default)
Mostly for my benefit, content notes for medical procedures, weight loss, etc.

Read more... )
rmc28: Photo of me shortly before starting my first half-marathon (Default)
Lots of hurry up and wait, and much faff with prescriptions, but eventually all sorted.

I am currently working on staying awake enough to eat enough to take my evening meds before I go completely splat.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
I lasted an hour or two yesterday on the sofa, and occasional wandering around "to see what I can do".  First time walking up stairs for nearly six weeks was weird - no problem doing it but my leg muscles felt very strange.

Then I went to bed for the rest of the day, apart from dinnertime, sleeping for some of it.  I sorted out a week's worth of medicine into my shiny pill organiser, which was quite the experience.

I slept pretty well overnight, but was amused that I woke up at 2am as if I were in hospital and about to have my 4-hourly observations done.  Once I realised where I was, I fell back asleep again no problem.

Today has also featured a lot of being in bed, resting on the sofa, and getting used to figuring out what I want to eat from the selection "in the house, meets hygiene restrictions, easy".  Rather than "what is on the menu" and "what will get brought to my bed by the caterers or the nurses".

The microwave broke a few days ago.  My priorities: by the end of breakfast (cold cereal rather than the porridge I would have preferred but was not up to making on the hob), I'd looked up the Which? best buys, picked one, and ordered it for next-day delivery. 

I have managed to make the necessary phone calls to confirm (possibly create) my Essential Unmissable outpatient appointment on Monday.  3pm in Oncology.  Usual Addies problem: lovely people, rubbish bureaucracy.

Probably time to lie down again now.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
I am sat on my own sofa in my own home writing this.  I am HOME and it is wonderful.

There were mutterings yesterday, and this morning the consultant declared I could come home, and I was basically free to go about lunchtime.  The housekeeper insisted I ate my hospital lunch before leaving.  My mother and mother-in-law played porter and we got a taxi from the hospital and now I am very slowly directing unpacking of all my bags and thinking about retreating to bed before C gets home from school.

The doodle visiting schedule is no longer applicable.  I think it will take me a week or two to get used to the new normal of being an outpatient and work out how visiting me at home might work.  All the same things apply: no-one who is ill (or who has been in the last 48 hours) should visit me, and hands should be washed with soap and water before any contact with me.  I will be avoiding large groups of people for the duration of outpatient treatment.

I have to go back into outpatient clinic on Monday (to a named-person clinic without a location or a time, but apparently I will probably get a letter with more detail).  But I get to spend the weekend at home.  Hurray.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
One of the consequences of getting me more interested in the Hugos, and especially this year's nonsense with slates, is that I've started actively looking for new short SFF so that I can collect a list of good short stories, novellettes, novellas to nominate.

(I am firmly of the belief that you don't need to have read "everything" to nominate, out of some idea that you have to know "what's best".  Just read stuff, and when you find something you think is amazing and would like others to read a) talk about it at the time b) put it on a list to nominate so you don't forget.  If you're really lucky you'll end up with more on the list than there are slots and then you'll get to choose from that.  But the whole point of a crowd-sourced nomination process like the Hugos is to get a shortlist of things that lots of different people thought were amazing.)

So, where do I go to read new stuff?

Lightspeed Magazine (winner of Best Semiprozine Hugo for 2015)
I have a 12-month ebook subscription, and the entire back catalogue, thanks to backing the Queers Destroy SF kickstarter earlier this year.  However, Lightspeed also make the short fiction and non-fiction available freely online, releasing in stages over the month of the issue. They also release podcasts of the stories, if that's to your taste.

To quote their About page: "Our current publication schedule each month includes four pieces of original fiction and four fiction reprints, along with two feature interviews and an artist gallery showcasing our cover artist.".  The fiction is equally split between SF and Fantasy.  They also give word counts and publication dates, which makes working out what a story is eligible for much easier.

Again, I have an ebook subscription to this magazine, this time via Patreon.  Again, the contents are published online for free each month, and again there are podcasts of the fiction, which get released in stages over the month of the relevant issue.  There's a mixture of new fiction and reprints, and Clarkesworld describes itself as a "science fiction and fantasy magazine".  Again, they supply word counts and publication dates, which I find very handy.

Strange Horizons
This is mostly funded by an annual fund drive (currently in progress) although they seem to be trying out Patreon too.  Strange Horizons is a "speculative fiction magazine", published entirely online, which updates weekly on Mondays, with a mixture of fiction, poetry and reviews.   Almost all its published work is available in the archives.  No word counts though.

I tend to prioritise the first two, as I've paid for them, and then Strange Horizons.  I'm also collecting a list of other places that publish online, mostly through finding places where authors or artists I already am interested in are getting published, but I'm not yet really in a position to recommend them, as I barely keep up with the three venues above, before I get onto these others. 

I will however mention Beneath Ceaseless Skies, which was a non-slate finalist in the Semiprozine category for the Hugos (alongside Lightspeed Magazine and Strange Horizons), and whose sample in the voting packet I rather liked.  It describes itself as publishing "Literary Adventure Fantasy" and publishes every two weeks: two new stories, and one from the archives, plus podcast versions of (some of?) the stories.  Issues can be read online or downloaded in a variety for formats.  Funding seems to be by donations or Weightless Books subscriptions.   A quick look suggests publication dates but not word counts are provided as a matter of course.  I think I'm adding this to my list under Strange Horizons.

Finally, there is an interesting Kickstarter running right now: Long List Anthology which aims to publish the "longlisted" short fiction from this year's Hugos, where it's available for reprint.  It's already made its base goal, so supporting it at the $10 ebook level is essentially pre-ordering a lovely-looking anthology.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
 My neutrophil (white blood cell) count is above 0.1 (of whatever the unit is), which means docs are willing to say it is rising. I can go home when it is above 0.5 if all else is going well. Translating that to an expected day or date range ... the doctor will check with the consultant for tomorrow (also we'll have tomorrow's counts so better data).

I've asked about requirements for taking the did-chemo-work biopsy, as that's not the same as going-home requirements, but is also something I'm really keen on happening. Should find out tomorrow what those are too.

I think this uncertainty is one of the hardest things for me to get used to. I'm very used to planning my time: timetables, calendar appointments and deadlines. This, I suppose I should call it data-driven planning, is clearly the right approach for my circumstances but it doesn't fit my usual approach at all. And so I'm slowly learning the right questions to ask: what are the thresholds of interest, what happens when we reach them, what are today's results, what is the trend.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
I have a bit more energy today - I've actually achieved sitting up and firing up the laptop.  This morning's doctor visit included the information that my blood cells aren't rising but "they look as though they might be about to".  There is a threshold above which the doctors will consider them definitely rising and I haven't quite achieved that.

I am still "spiking" a higher temperature about once a day, and I have a horrid mouth ulcer (apparently very typical on ATRA), and we are trying an option of 3 days of steroids to encourage it to heal fast.  This carries some other risks, which the consultant talked me through, and we agreed were acceptable/likely to be minimal.

I want, so very much, to get well enough to go home.  It was 5 weeks ago that I walked into ambulatory care thinking I was just having a few tests done, only to spend all day there and be admitted to the respiratory ward that evening.  Even though becoming an outpatient is still going to mean a lot of day visits to Addies, I'll at least get to sleep in my own bed and see more of my family.  And if I can get home by Saturday it'll be much easier to keep up with LibDem Conference.

I probably need to get a pill organiser for home, given the number of different things I'll still be taking each day, without nurses to track it all for me.

rmc28: Photo of me shortly before starting my first half-marathon (Default)
I spent most of yesterday lying down with my eyes shut, whether asleep or not. Today is looking similar. But apart from the complete lack of stamina, I'm feeling pretty good.

medical details )
rmc28: Photo of me shortly before starting my first half-marathon (Default)
I read three books this week!  All are historical romances by Rose Lerner, essentially because two of them have been on my private wishlist for a while, and the third (although the first I read) was on sale at 49p and sounded fun.

A Lily Among Thorns is about Serena Ravenshaw, former exclusive courtesan turned innkeeper with a terrifying reputation in London's crime underworld, and Solomon Hathaway, shy chemist and tailor.  Solomon comes to Serena because she has a reputation for finding things, and some heirloom earrings have been stolen from his family.  As they look for the earrings they get sucked into international espionage on the eve of Waterloo.

I enjoyed this very much; I loved that Serena was prickly and frankly scary at times, and that Solomon was shy and gentle but kept finding his courage to stand up to people being rude to Serena.  I also loved his ongoing obsession with people's clothing, and that he keeps not responding to Serena the way he expects (his response to her cross-dressing at one point is absolutely priceless).  The romance and the conflict between them felt real, and arising from their very different personalities and experiences.  (Oh, and there are some non-white and non-straight secondary characters, which is always a breath of fresh air.)

Sweet Disorder and True Pretences are both part of the "Lively St Lemeston" series, that being a small country town in which they are set (and another book to come later this year, I gather).   [personal profile] skygiants has written great reviews of them here and here, (which is why they were on my reading wishlist) but I'll have a go.

Sweet Disorder is the one about an election where there's a widow who can give someone a vote if they marry her; at first she's not interested but then her sister gets into trouble and she needs money.  Essentially, both candidate campaigns offer to bribe her to marry someone on their side.  The Whig is nice but utterly unsuited; the Tory has a young daughter who likes to read, but has horrible politics (and doesn't listen to her); and of course she's actually more interested in one of the matchmakers.

True Pretences is the one about the Jewish con-artist brothers, the younger of whom (Rafe) wants to go straight, so the older one (ash) finds a nice heiress (Lydia) who can't access her money to continue her political work unless she gets married.  All his delicate set up work gets thrown away when Rafe says "hey, so how about a marriage of convenience eh?" and she says "well, it's an interesting thought but actually I might prefer your brother" and Rafe says "fair enough, would do him good" and Ash is all "what? no, it's your nice marriage of convenience" and then the brothers have a big argument and Rafe leaves, but not before angrily telling Lydia about the Jewish con artist part too.  And Lydia thinks about this and says "still need to get married, how about it Ash?"    

And that's just about the first third of the book and the rest is Lydia and Ash convincing her entire social circle that this is totally a whirlwind romance and definitely not a marriage of convenience, and comparing notes on swindling vs political persuasion when you can't vote, and eventually the brothers' wicked past coming back to bite them.

All three books are a lot of fun, and generally warm and engaging and not too much outright villainy.  People are flawed and human rather than Good or Bad.  There's a bit of a theme about sibling and friend relationships being as complicated and difficult and worth sorting out as romantic relationships.  I could see rereading all three of them but think A Lily Among Thorns is my favourite.

rmc28: Photo of me shortly before starting my first half-marathon (Default)
Content notes: blood, medical procedures, needles

trouble on t'line )

More general updates:

My view really is good, If I sit up not only do I have a nice view of hills etc, but I can also see the railway line and all the trains going between Cambridge and London.  I amuse myself counting if they are 4, 8 or 12 cars, and guessing by the colour which ones they are.  I could look them up but haven't yet bothered to.

I'm continuing to improve: over the last two days my appetite's increasing, I feel more like myself, I have more focus.  I'm still running high temperatures some of the time, but the overall trend is definitely down.  I have no stamina whatsoever and will fall over tired after talking too much or getting washed, or writing a blog post, but what I can do in my short bursts of activity is becoming more complex, if that makes sense? 

I read two more books, and managed a phone discussion with C about possible after-school activity clubs, and a longer chat with Louise about screen time and bedtimes and what my ideal would be if I were there, for her to talk over with Tony (as they're the ones that have to enforce it, and I'm not).

I think I'm due yet more platelets this evening but they haven't turned up yet.  I have now reached the point of losing count of how many transfusions of platelets and red blood cells I've had: more than 3 and less than 8 of each, more platelets than red blood cells.

rmc28: Photo of me shortly before starting my first half-marathon (Default)
I have had yet another bed move, this time into a private "side room" again.  This is because one of the many (many) samples they have taken from me has been found to contain MRSA, and so I need to be barrier-nursed and kept away from other patients.  I have yet to ascertain whether I'm allowed to leave the room to shower (there being none in here) or whether I get to "enjoy" a bed-bath from an HCA.

People can still visit, though you should be extra-vigilant about handwashing both on arrival and departure and should probably minimise physical contact with me.

On the other hand: private room.  The bay I was on had got considerably more bearable recently: the confused old lady has been moved on to another hospital (and I sincerely hope it has better support for her) and for the last few days I've had three grandmothers of similar age who like to chat genially with each other, in a way I found easy enough to wash over me, and wasn't obliged to join in much with.

But it has been utter bliss this afternoon in my own space, with only my mother with me at intervals, and not feeling the need to self-censor.  Also the view is nice and includes the hospital helipad for occasional excitement.

As you might guess, I also seem to be getting over the MRSA or whatever-it-is that has been giving me a fever for most of the last week.  I've had a normal temperature for entire hours at a time.  It's been very clear how my brain starts turning to sludge as my temperature goes above 38 degrees and starts working again when it falls back below  (you can write your own snark about the pressure group).  I read a book yesterday and today!  I literally could not do that all of last week.

I'm still throwing high temps at times, but the trend seems definitely downward.

Oh, and I am shedding hair on everything like a cat, but there is clearly lots to come out before I start rocking the bald look.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
I am full of cold symptoms and exhausted by them. Assorted tests are being run, drugs applied, treatments sought. But mostly I'm drifting in and out of sleep and feeling rotten.

The earplugs are helping: they don't completely block everything, but enough that I can sleep through things that used to wake me.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
Overnight I've developed a temperature and cold symptoms, and am on IV antibiotics and fluids to combat them. This would have been much scarier at home.

I find this bay on the ward very wearing. I can't avoid hearing everything going on at each of the other 4 beds, whether it's loud daytime TV or people's diagnoses, arguments with family, biological functions, etc. And I'm highly conscious that the same applies to anything I say or do aloud.

There is an older woman who can't see well and is a bit confused, and she never remembers the nurse call bell, just calls out again and again. I want to be compassionate and understanding but at times I quite hate her :-(
rmc28: Photo of me shortly before starting my first half-marathon (Default)
The nurse came to tell me that the consultant overruled the registrar and said no I don't get to go home after all.

I don't have words for how gutted I feel right now. (also deeply unimpressed by who gets landed with giving the bad news)

rmc28: Photo of me shortly before starting my first half-marathon (Default)
I'm having some unpleasant digestive TMI (which nurses and docs are clearly trying hard to address), as well as missing home, as well as feeling the utter lack of privacy on the ward quite hard. 

In an attempt to address low blood pressure I have been given a delicious milkshake with ice cream - which I promptly spilled down my nice clean hoodie. Bah.

My comfort-reading stash is getting quite the workout this morning, and I have visitors to look forward to, so I won't be grumpy forever :-) 
rmc28: Photo of me shortly before starting my first half-marathon (Default)
Now expanded to 7th Sep as "can reasonably expect to be in at least till then, but maybe not long after": http://doodle.com/trxc2pkak5fnnyfp
rmc28: Photo of me shortly before starting my first half-marathon (Default)
The short version:
I have finished the first round of chemotherapy treatment, but I will need to stay in hospital for probably at least two more weeks. When and how I get to go home and what happens next is all a matter of wait, watch and see. I have daily blood tests, and those results are what’s being watched.

Long version: Read more... )
rmc28: Photo of me shortly before starting my first half-marathon (Default)
Apparently to be expected at this stage. Also yet another bed move, which seems to have been driven by changes to the gender mix in the ward. I'm by a big window at least, with a view mostly of sky and concrete.

I'm also having platelets transfused as I type this. My first receipt from the National Blood Service, no doubt not the last.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
I wasn't planning to watch them live, that would be ridiculous in this time zone, and hardly a low-stress option.

Except my body is apparently WIDE AWAKE.  Hurray for liveblogging (my reception in hospital isn't up to the full video stream even if it wasn't antisocial), and on with the excitement.

rmc28: Photo of me shortly before starting my first half-marathon (Default)
Clare's made me a visiting schedule for next week on Doodle; if you want to visit me, please write your name in and tick the slot that suits.  Only one person (or couple) per slot please.  No children but my own.

I am up to seeing people but I am not very up to tracking who is coming when, so we thought we'd give this a try.
rmc28: Rachel speaking at a lectern with microphone and part of the slogan "Stronger Economy Fairer Society" in shot (libdem)
My hair's going to start falling out in another week or so. I decided to reduce the inevitable mess by cutting it short ahead of time, so this afternoon's exercise has been going back to the 9mm trim of 2013.  (also bonus less effort to stay clean and non-sweaty between now and Fallout Time)

Tony has tweeted a set of photos in-progress, and here's my hospital-bed selfie:

Haircut selfie

Charles enjoyed helping cut it; Nico wasn't that interested but has commented cheerfully that "your hair short like Daddy now".  Tony did all the buzzing :-)
rmc28: Photo of me shortly before starting my first half-marathon (Default)
I woke up with a little morning burst of energy, and my wardmate persuaded the nurse to bring us some food (real breakfast turns up around 9am).  OJ & toast fuelled me through a shower and clean clothes, and my bed was freshly made by the morning nurse.  Now I might have a little lie down on it to recover before second breakfast :-)

I inhaled a new paranormal romance book a couple of days ago: Wolf in Sheep's Clothing by Lauren Esker is a warm, sweet romance between a were-sheep and a were-wolf from feuding families in rural USA.  I liked that the romance itself was straightforward and the conflict was real and external and not contrived by no-one having an honest conversation (there were some very touching honest conversations too!).  Also the wider family on both sides were great, especially the were-sheep granny matriarch.  It's 99p for about another day, I think.

As it had been so exactly the sort of thing I want to read right now, I signed up on the author's mailing list and have just bought her new release: Handcuffed to the Bear.  I'm a few chapters in, and enjoying it very much (it opens with the protagonists coming round from unconsciousness, handcuffed together on a remote island, wcpgw).  It's also currently 99p.

Lauren Esker is a penname of Sholio, who also happens to write some of my favourite MCU fanfic too :-) 

rmc28: Photo of me shortly before starting my first half-marathon (Default)
A short appropriately-themed (i.e. death and medical advances) Discworld fanfic, now at AO3


rmc28: Photo of me shortly before starting my first half-marathon (Default)
 Some photos on twitter from yesterday and this morning, but I'm back to being mostly horizontal again it seems.

Edited to add:
Also apparently for moving beds. I'm no longer in H4 by myself, but on a 2-bed bay with Other Rachel, just off nurses' reception. Clearly doing too well :-)
rmc28: Photo of me shortly before starting my first half-marathon (Default)
[personal profile] stephdairy said something lovely in a comment on one of the medical posts that I wanted to share more widely:

I always wondered what the defining characteristic of the future would be. It's not flying cars, it's not a moon colony, hell it's not even that you have a stonking chance of beating this thing... It's that you have people there even when they're not, that community, caring, and loving can span the globe.

It is so true. My physical world is very small right now (mostly in bed, though with a newly-decorated wall to look at and a reasonable view out of the window).  But my emotional/mental world is wide and sustaining, and I am incredibly grateful.

I have graduated to sitting up and using my laptop for short periods, rather than pecking things out on the phone or tablet.  This is so much nicer

I am more up to short visits now.  [personal profile] ceb is going to help me set up stuff to schedule it, when I get back to her :-)

For now, if you are in the area and want to pop in for a few minutes (on the understanding I might say "sorry, please go away" or be asleep), I am in bed H4 on D6 (it's signposted) and visiting hours are fairly relaxed.  Don't make special visits yet, because of aforementioned random may-be-asleep-or-antisocial.  Ironically I seem most awake first thing in the morning, which is when the staff here are busiest.

And please, please don't come if you have anything at all communicable.  That's probably the most important thing, not just for me, but for everyone on this ward.
rmc28: Photo of me shortly before starting my first half-marathon (Default)
Content notes: bodily functions, medical procedures, morbidity and mortality, weight loss
Read more... )
rmc28: Photo of me shortly before starting my first half-marathon (Default)
Admin: medical posts are public and behind cuts. Too much work to maintain a filter, and too many people with an interest and no DW account. I'll put future medical detail in its own posts in the same way.

Basic update: I've had a rough start to treatment, docs have worked hard to mitigate and I slept really well last night and am making use of this burst of energy to write this and catch up on messages etc. I've a minor procedure this afternoon which might knock me back again, so if I go quiet that's why.

My mother is in town for a couple of days and keeping me company. She's going to be visiting on a regular basis for the duration. Tony's mother has reorganised her life and is coming to live with us long-term from this weekend, which is utterly amazing of her and should give us a bit more capacity to cope and to make use of the many generous offers of help, and move out of day-to-day crisis management. Tony and the children have had a badly-timed bout of stomach bug but hopefully I will see Tony tomorrow.

  1. All the support and offers of help, really feeling loved and supported and appreciative.
  2. NHS treatment free at point of delivery, and my employer's generous sick leave policy means we don't have to worry about money on top of everything else.
  3. This cancer is curable (yay science) even if the cure isn't much fun.
  4. The staff here are all very kind and I'm managing to learn names (never my strength).
  5. I have a room to myself, which suits me.
  6. Internet and smartphones :-)
rmc28: Rachel speaking at a lectern with microphone and part of the slogan "Stronger Economy Fairer Society" in shot (speaking)
 Gossip, photos, fic recs, podfic recs. All welcome here.

I'm currently sleeping a lot, listening to ybeb podfic and intermittently checking email (inc comment notifications) and twitter. Reading anything longer or writing much probably going to wait.

See also: http://fanf.livejournal.com/135958.html
rmc28: Photo of me shortly before starting my first half-marathon (Default)
Thank you all for the lovely messages of support, I'm all emotional and feeling the love, and I'm hanging on to them when things are hard. It may not feel like much at your end but it's making a real difference at my end, I promise you.

I started treatment last night and it's already Officially No Fun and exhausting so again apologies for slow/no response. I am reading and appreciating.

Tony came today and has a list of things you can do to help, which will go up at [livejournal.com profile] fanf as his domestic duties allow. There's some stuff about visitors in it because I'm to tired to deal right now with schedules.

Cancer sucks. Science is great. I need to lie down again.


rmc28: Photo of me shortly before starting my first half-marathon (Default)
Rachel Coleman

November 2015

23 45678
91011 1213 1415
16 171819202122
2324252627 2829


RSS Atom

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags
Page generated 2015-11-28 16:35
Powered by Dreamwidth Studios