rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
One of my treasured possessions as a child was my complete works of Hans Christian Anderson, and I know I read and reread the Snow Queen story in it several times.  This retelling by T Kingfisher is wonderful and absorbing; I half want to go reread the original to pin down the differences (because time has dulled my memory) and half want not to, because it won't be as good.  There are multiple(!) no-nonsense grandmothers, a raven with a decided viewpoint on the world and his place in it, and some delightful otters.  And the dreams of plants turn out to be surprisingly important.

It also made me cry, for personal reasons almost entirely unrelated to the plot.  In this passage, Gerda and Janna (the bandit girl) are talking with Livli, an old Sámi woman, about a magic shapechanging reindeer skin.


Janna interrupted her thoughts by asking, "What if I wear the skin instead?"

"Can’t,” said Livli. “Oh, I’m sure you’d try, don’t get me wrong. But you’re too set in your own skin. You’re a healthy young animal and you know it. And people who really live in their own flesh and know it and love it make lousy shapechangers.”

“I…well. But Gerta doesn’t?”

Livli shook her head. “Some people don’t. Their bodies carry them around, but they don’t live in them quite the same way.” 

She leaned over and patted Gerta’s hand. “Don’t look so stricken, dear. It’s not a personal failing. And I think there may be something else at work here, too. You’re outside your own skin even farther than you ought to be. Have you had a long illness recently?”

 

I had to stop reading for a bit, because I hadn't even realised that I was feeling a disconnection with my body, and that it was bothering me, until I read it put into words about someone else entirely.  I don't always love my body, but I do normally live right inside it and know it well (which is why I knew something was wrong even before I got really ill), and I've been a bit detached for some time, and I hadn't even realised and it explains ... oh all sorts of little things about how I'm recovering, and how even with habitual self-monitoring I'm frequently surprised by feeling Suddenly Energetic or Suddenly Tired.

So I stopped reading for a bit and had a bit of a cry at my revelation (and a bit more for having had cancer in the first place because apparently now is when I do that, not when it was happening) and then I went back to the book until I'd finished it.  It was worth it.

rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
Yesterday I had a meeting with my boss and we went through my plan for a phased return starting next week, and caught up on the highlights of what's happened while I've been ill.  The current plan is:

Start on 60% time and review after 2 weeks. I'll work Mon-Fri mornings, and a full day on Wednesday.  Ideally after two weeks I'll be ready to move up to 80% time, but if not, we'll stick on 60% for another two weeks.  For 80% time I'll add in two more afternoons, Monday and Friday, and again we'll do two weeks and review how I'm doing - should I cut back again, stick on 80% for another fortnight, move up to full time.

I have an appointment with Occupational Health next Wednesday, which I can go to with this plan in hand, and the experience of the first few days on it.

I have been practising my commute for a couple of weeks (cycle there via nursery; walk back), and I'm no longer wiped out by it, just left a bit sweaty and sticky.  (This is what changes of clothes and work showers are for.)  I'm very deliberately choosing to go in five days a week from the start, because I'm more confident in my physical fitness coming back than I am in my ability to concentrate on my work for a whole day.  But both need practice to improve.

It was really nice to be back in the office and see my colleagues again.  I'm really looking forward to next week, and getting a bit more of my life back.
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)
I managed to take N to nursery by bike 4 out of 5 days this week. On Friday, we were running later than usual, and I had a nutrition course to get to at the Maggie's Wallace centre at the hospital at 10. There was no way I would get there on time by bus, so I was slightly courageous and cycled it. I went very slowly when compared to Before Cancer, and got very wet but I had time on arrival to change clothes and tweet a humblebrag before the course started.

I got home again in the afternoon without major incident, though I was very tired, and I spent a good part of Saturday afternoon in bed resting. This left me in good shape to cycle up to Girton for Matthew's singstar party which was most excellent fun. Cycling home about 1am was rather lovely - I pointed the bike homeward and didn't rush, and it was well above freezing so I didn't even need gloves.

The only downside was that the cycle ride woke me back up without wearing me out enough to sleep, so I accidentally started looking up Hamilton videos on YouTube following [livejournal.com profile] siderea's very helpful review explaining what all the fuss is about. The official cast recording isn't available on YouTube from the UK (sigh) but enough unofficial videos were available to convince me to buy the cast recording. I got as far as The Room Where It Happens before turning it off so I might actually sleep. (Actually, for other UK people, the video of Lin-Manuel Miranda performing the opening song at the White House in 2009 is available and that pretty nearly sold me all by itself.)


rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
detail of exercise/capacity )
Conclusions:
1. I was not nearly as grateful for my fitness level before getting ill as I would be if I had it now.
2. My body does respond well to increasing activity by increasing fitness, now as much as before.
2a. So long as I remember to adjust plans and take rest in response to tiredness/reaching limits.
3. Migraine-management has been such good practice for 2a.

rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
Yesterday was not so much fun.  The site where my line was removed is a bit bruised and sore, and it's just where Nico likes to lovingly headbutt me when he leaps in for cuddles.

In addition, I went for a smear test, and had to abandon it as too painful. We'll try again in another 6 weeks (as far ahead as the GP booking system goes), and if that fails, there's a specialist gynae clinic I can go to.
cut for smear test detail )


This week with children back to nursery and school, and Tony back to work, we have been working on the daily and weekly routine.  In my head I call it "practising for work".  I've been trying to get up and get the children ready as though I were going to work; and in the evenings I've been collecting Charles and preparing supper as though I'd just got back from work, so it's ready when Nico and Tony get back from nursery.  In between time I'm resting or studying or getting health work done.

We're trying out planning the weekday evening meals on Sunday, aiming for something a) I can cook b) everyone will eat c) different each evening.  Previously we used to rely on Tony to figure something out each evening when he gets home.  Tony is a much better cook, but I can do basic stuff, and would like to practice and improve.

So far the evenings are going better than the mornings, but this morning I did achieve me+children ready early enough that I could take Nico to nursery.  This was also my first bike ride since July.  I had no problems at all with the mechanics of cycling - the bakfiets is as delightful and familiar to ride as ever - but by the time I got back I needed to sit down for a nice long rest.
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.

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

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