rmc28: (family)
Today's consultant appointment confirmed that I seem to be cancer-free[1], and I am now formally in follow-up.

I will have bone marrow tests every three months for the next three years, and I'll continue to see my consultant in clinic, I think on the same frequency (the next one is 3 months from now anyway).

[1] the definitive all-clear comes from a PCR test on a sample which looks for a faulty gene called PML/RARA which is a distinctive feature of APL; that test result hasn't come back and the consultant says that "it will trickle in eventually" but every single other sign points to me being all clear.

rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
Possibly I exaggerate, but I am very happy today.

I arrived at the day unit to be told that if my blood tests came back ok, I could have my line out today.  So I hung around for about 90 minutes and was then given the go-ahead to go down to Vascular Access.  I had to hang around a bit there too, but then it was about 20 minutes of minor surgery and boom, no more central tunnelling line.

From tomorrow, I can shower as normal!  No more having to muck about taping plastic over a dressing and contorting myself to keep water off it.  I should be fully healed up in 7-10 days. I will be able to go swimming!  I can consider exercising!

My line is out, my blood results are fine, so I no longer need to go in to the day unit.  I said goodbye and thank you to the staff there as I left - they are the nicest people I hope I don't have to see again.  I don't have to go to the hospital again until my appointment with my consultant towards the end of the month.  It is like a whole bunch of normality got returned to me all at once.

I have been grinning in the goofiest way since leaving Vascular Access.  Such a good day.

rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
Having a working immune system is great.  My cough is nearly gone and today I went on several buses, and to a place inhabited by large numbers of children, and I might do something similar tomorrow. 

Louise and I took the children by bus to the Funky Fun House; normally I do this by bike but that didn't seem sensible yet.  It's two buses with one change on the edge of the city centre and a short walk at each end.  The children were mostly cooperative and sensible on the journeys, and clearly enjoyed hurtling around at the play barn for hours until I declared time to come home before we got caught in the rain.

Cambridge buses are much less stressful to use if you are in no particular hurry to be anywhere; the long tailback on the way home due to cars queueing for the Grafton Centre was merely a bit dull, and at least we were warm and dry.

When we got home, Nico spent over an hour being entranced by CBeebies Stargazers, which delighted me by having Dr Maggie Aderin-Pocock co-presenting.

Louise goes home tomorrow morning; the children and I have a vague plan to do the long bus ride to Cheeky Monkeys once she has departed.

rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
My blood cell counts are nearly back to normal (neutrophils have been since last week, platelets are now, haemoglobin is very nearly there), so I asked about scheduling removal of my line. Apparently the day unit nurses can't book this but the Macmillan specialist nurse can, only she's not in this week.  Anyway, they will email her to ask her to book it when she's back.

I still have a stupid persistent cough from the bug I caught from the children two weeks ago.  I don't actually feel especially ill - if anything I have more energy right now than I've had since before the Evil Blue chemo cycle - but it is annoying and frequent.  I'm sleeping sitting up and still getting woken during the night.  The doctor took a listen to my chest and sent me for an xray.  She said neither showed anything but she's giving me a week of antibiotics to be on the safe side.

The main business of today's appointment was another bone marrow biopsy.  It was the least painful yet, but it was clearly hard work for the doctor.  She said it might need repeating, but they'd see if they could get what they need first and let me know if not.

I'm back again next week for line management and blood tests and will chase the line removal if it hasn't been arranged.  It's nice only going in once a week, and I guess once the line is out I won't even need to go that often.

I really want to get on a bike again now my platelets are back in the normal range, but the nurses advise not until the cough goes away.  Sigh. 
rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
This is articulating a lot of stuff I've been thinking over, especially the last month or so, about my priorities as I start getting "back to normal".

1. Health and fitness
(content note: exercise, weight, mental health)
Read more... )

2. Immediate family

The children have coped admirably with all the disruption and uncertainty, but they're both showing reaction in different ways. I want to give them lots of security and support and attention and stability. I plan to take a good look at our daily and weekly and seasonal routines with that in mind. 

I suspect some additional goals and tasks will come out of couples counselling.

3. Work

The cliché is that a brush with death provides revelation and motivation to chuck in the job and go follow a long-held dream etc.  My revelation from being ill so long is that I really like my work and I miss my job and my colleagues very much, and I want to go back as soon as I feel able.  Probably in a phased-return way so I don't go from zero to full time immediately.  Anyway, the time to start that conversation with work is probably a week or two into next year when this chemo cycle should be finished.

4. Studying

I'm studying with the OU under transitional fees and the qualification I'm working towards will be discontinued at the end of 2017. It is just possible for me to finish on time if I work hard from now until September 2017, and especially hard for the nine months Sep 16 - Jun 17. I've decided to give that plan a try but drop the workload if it's too much.   If I don't manage to complete by September 2017 much of my course credit is transferable to the replacement qualification anyway.

5. Family, friends and community

The care and support I've received while ill has been amazing and much appreciated.    I've found it too easy to let connections slide, especially when busy.  So I'm going to put some time and effort into maintaining connections (socialising, letters, emails, calls, blogs, even dratted Facebook), and into making that work part of my daily and weekly routines.

Two things notably absent from the list above:

1. Reading.

I won't stop reading entirely, it's too much part of me to read whenever I can. But studying will take up much of the time and effort I'd otherwise spend reading, and that seems a fair trade-off for now.

2. Politics

I'm finding it very hard to engage with politics at the moment: anything more than the most superficial attention to current events leaves me emotionally drained and exhausted.  Maybe that'll improve as I recover, but I don't think the five things I am choosing to prioritise will leave me much time over anyway.
rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
1. I've taken my last dose of anti-cancer pills this morning, hopefully ever.  Nice timing.

2. Yuletide opens tomorrow.  I discovered this huge fanfic gift exchange four years ago when I was pregnant and rottenly ill with it.  One of my dwircle/LJ friends (don't even remember who!) linked to their gift .  Over the next week I found myself working through the collection as a welcome distraction and bulwark against how miserable I felt - one particular long cold train journey was made bearable by the stories I read on my little smartphone as we trundled along.

I've participated a couple of times now; not this year because for obvious reasons I didn't think I could commit to writing anything (I was right). But the amazing thing about the gift exchange is that all the stories are available to anyone to read.  I now have a little routine: I download all the fics that look interesting in the fandoms I know, and load them into my ebook library held in Calibre.  Then I browse my way through the still-anonymous fics, clicking through from the handy end link to kudos / comment / bookmark as appropriate.  I never ever finish doing this before authors are revealed (and I get emails for all the authors I'm subscribed to), but it means I can continue to read fics anonymously throughout the year.  And of course I look out for recs by others and follow those too.  It's one huge indulgent reading festival, and it starts tomorrow.

3. My children are both SO EXCITED about Christmas; I think about 90% the haul of presents under the tree, and 10% the promise of lots of indulgent food.  It's due to stop raining soon, at which point I'm dragging them to the playground to work off some of their energy.
rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
I woke up this morning with no voice, thanks to the ongoing cold.  In theory I am avoiding talking, but that's going about as well in practice as you might guess if you've ever met me.

Louise arrived last night, and we both spent a good chunk of today wrapping presents, which was very pleasant, especially for not being at midnight on Christmas Eve. (have I mentioned I default to deadline-driven?)

I went out a couple of times today - in the morning to get some shopping done, and in the evening to collect Charles from his holiday childcare, and I've managed to rack up 10k steps on my fitbit for the first time since we were in Bristol the week before I got diagnosed with cancer.  That has cheered me immensely.

Now I'm resting in my room; drifting up from downstairs are the sounds of Tony and his mother attempting to put away the vast Christmas supermarket delivery.
rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
Both Nico and Charles had days at home with a cold this week, so it was kind of inevitable that I would catch it too.  Luckily my immune system seems to be coping so far.  I was a bit paranoid, so spoke to the 24-hour helpline yesterday, who sent me to my GP, who pronounced me free of worrying noises in the lungs or swellings in the throat.  He did recommend a better thermometer, so I can monitor my temperature (the key sign that things are Going Wrong), so I bought one from Boots in between all the faffing with banks.

Oncology called me back today just to check on things, which was nice of them.

I have spent much of today playing with my household accounts software and trying a new structure that is actually more like wot proper double-entry bookkeeping should look like.  This has made me happier than it might sound.

Tony and Charles went to see Star Wars: The Force Awakens which was enlivened by an evacuation of the Leisure Park in the middle.  It seems to have been a success. I am hoping to have recovered a sensible immune system before the film leaves cinemas.
rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
Things I have achieved in the last few days:
  • Helsinki 2017 memberships for the family (and continued associated nerdery about travel plans)
  • caught up accounts / paid bills
  • Maggie's Wallace visit and course bookings
  • supermarket delivery on Tuesday to cover this week and not-Christmas meal with mum and stepdad
  • contacted favourite plumber re collection of little jobs that need doing
  • researched patio awnings / canopies
  • opportunistically signed up next-door's window cleaner (OMG we can SEE through the windows)
  • thoroughly culled worn-out, ill-fitting, or not-quite-my-taste clothes (4 bags for charity shop, 3 for textile recycling)
  • ordered experimental new pillows
Things I have not achieved in the last few days:
  • any OU study at all, argh
  • wrapping presents
  • writing/sending Christmas cards

(Yes, after a rough few days at the start of the chemo cycle, I am feeling pleasantly more energetic, please please let this last.)
rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
Yesterday I found my way to the Maggie's Wallace centre at the hospital, which is based in one of the residential blocks. They were recommended to me by [personal profile] andrewducker, and [personal profile] ceb brought me a leaflet about them when I was first admitted, but it was only this week I managed to remember to go while I had energy and some spare time.

Everyone there seemed very friendly and kind, and the lounge is quiet and pleasant to sit in. I got swiftly taken in hand by a member of staff who gave me a friendly welcome and very pleasantly and efficiently assessed my situation and needs, and provided appropriate suggestions of ways they could help me. She was also very keen on evidence-based interventions, to which I responded "music to my heart".

I've got Tony and I on a waiting list for couples counselling. Not because we're in trouble now, but because we've been through something stressful and scary that has radically affected my ability to contribute to our shared responsibilities, and that's the kind of thing that can lead to trouble if not addressed. They do also offer individual counselling and I will probably take up some of that too, later.

I also signed up for two courses:
  • a six-session course for people completing cancer treatment titled "What Next" which will run sometime early next year, dates tbc
  • a three-session course on nutrition in January: 2 big group sessions and a 1:1 with a nutritionist for individual advice. I suspect most of it will not be news to me, but I could probably use some individual advice on how to fuel returning to the kind of activity levels I had before spending 4+ months mostly in bed.
It's a really calm and welcoming place, and I'm glad I made the time to go.

rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
I think I've mentioned more than once that I don't ever want to be pregnant again.  My last pregnancy was a months-long ordeal of nausea, pain, exhaustion, and increasingly limited mobility.  Well before it was over I knew I wasn't ever volunteering to go through that again.

Then I got acute leukaemia, the treatment for which is a months-long ordeal, etc etc.  Only worse.

I remember thinking, while the consultant was explaining my diagnosis and what treatment would involve, well at least I already know how to do this. I've had practice.

At least a) I didn't choose to get cancer b) no-one expects me to be happy about having cancer c) I'm allowed antinausea drugs and they mostly work. 

People sometimes talk about "fighting" cancer, but if anything my body is the battleground over which both cancer and chemotherapy rage; that metaphor doesn't really work for me as motivation.  The one I've borrowed from pregnancy is the endurance run: a long and difficult effort, some parts are worse than others, but it will end eventually and everything will be better. 

Sometimes I can think about the whole distance between me and that end; sometimes I'm just focusing on making the next step, and the next one, and the one after that.  Sometimes I'm kept going by others cheering me on, sometimes by thinking about what I'll do when it's over, sometimes by distracting myself by thinking of something else entirely.  And sometimes when none of those are helping, I fall back on stubborn determination to keep moving.

(To extend the metaphor, I'm doing a half-marathon while around me are people doing marathons and ultras, and quite a few of them will never get past their finish line, and I am really thankful that I "only" have a half-marathon to get through.)

Today I started on the last quarter of this run; it's the dangerous part where I can get fixated on the thought that it's almost over and forget that a quarter is still a long way, and I need to keep up the effort right to the end.

rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
Yesterday's biopsy was the least bad yet: the doctor tried a slightly different location and it was much easier for her, therefore much less painful for me.  We both made notes for next time.  I had gas+air when needed, which was much less than last time, and I didn't cry at all, which means it beat all previous biopsies.

Today's clinic appointment was pretty good: the consultant hadn't seen the slides from yesterday yet, but said they wouldn't change her decisions for now.  My neutrophil levels need to come up a bit more, so I'm back at the day unit next Wednesday, and if my neutrophils are high enough then (they almost certainly will be), we'll start fourth-and-last chemotherapy.  We went through what drugs I'll need for the duration, and everything seems straightforward.

Nice news: once my blood counts are up again after this round, we can schedule removal of my tunnelling line (also known as Hickman line) without waiting to see the consultant again.  I have mixed feelings about my line: it is very ingenious! it makes all this blood-testing and IV-delivery very straightforward!  But oh my goodness I am fed up with having to look after it, and keep it dry in every shower or bath, and having to keep track of when the dressing needs changing.

I am going to enjoy showers SO MUCH once I've healed up from the line removal.  And I can work up to going swimming.  I miss swimming nearly as much as running.

Best news: the consultant wants to see me again in 7 weeks - to begin follow-up.  Magic words those!
rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
Today's appointment confirmed that I am no longer neutropenic (white blood cell counts have bounced back up), which in turn means:

1. I can stop taking ciprofloxacin, which means I don't have to avoid drinking milk for two hours either side twice a day
2. Tomorrow I get another bone marrow biopsy (yay?) so that
3. I go to clinic on Friday and the sample from Thursday will have been processed to give my consultant meaningful information
4. I'm very likely to start fourth - and hopefully last - round of chemo next week

rmc28: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (Default)
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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (Default)
Mostly for my benefit, content notes for medical procedures, weight loss, etc.

Read more... )
rmc28: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel, in running tshirt and leggings, holding phone and smiling into mirror (runner5)
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: Rachel, in running tshirt and leggings, holding phone and smiling into mirror (runner5)
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: Rachel, in running tshirt and leggings, holding phone and smiling into mirror (runner5)
 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: Rachel, in running tshirt and leggings, holding phone and smiling into mirror (runner5)
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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (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: Rachel smiling against background of trees, with newly-cut short hair (Default)
A short appropriately-themed (i.e. death and medical advances) Discworld fanfic, now at AO3



rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
Rachel Coleman

October 2017

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