rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
My youngest brother arrived Christmas Eve and was drawn into a conversation with Charles about Transformers before he even put his bag down.

Finding all the presents I'd hidden as I bought them over the past half year, working out what was for who and whether there was a reasonable balance between the children.  Then wrapping them all.  I had managed not to go as overboard as in some previous years, but wrapping still took far too long, even with Tony's help towards the end.

Failing to wake Nico for the evening meal after he'd nodded off with his uncles earlier in the day.  Being interrupted about an hour after the meal by a furious and tired Nico, and spending some interminable period trying to help him through the meltdown enough to try the merits of warm milk and a cuddle.  And then staying up with him until after midnight because Christmas is too exciting!

Tony tweeting: "Father Christmas brought me four packs of coffee and a book of Cambridge barber shop tales. What is he trying to suggest?!"  (It is an open secret to everyone but Nico that I am Santa in this house.)

Calling Charles away from Minecraft to ask if he would like sparkling orange juice for elevenses like the rest of us.  He walked right up to me, paused significantly, and said "No."
"How about salmon on bread?"
"No"
"How about opening your presents?"
"Maybe"

Opening presents together: 4 adults, 2 children, approx 90% of the gifts by volume for the children.  So much fun.

Lovely food by Tony.  Pulling handmade crackers from my aunt as we all sat around the table.

Remembering that I took my last (ever, I sincerely hope!) ATRA dose last Christmas Eve.

Taking a little walk around my local streets in the evening to stretch my legs, and enjoying the variety of decorations on display.
rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
My brain is definitely still adjusting to the correction. I was highly distracted at collection by the way everything around me was Suddenly Much Sharper, and also Bent Slightly Wrong. My proprioception is a bit off still: on my walk home I began to feel as though I was about a foot shorter than usual, and stopped a couple of times to touch things for reassurance. Even now (some hours later) my laptop screen appears to be a trapezium rather than a rectangle. I am assured this will pass in time ...

A couple of obligatory phone selfies behind the cut (which also showcase my luxuriant wavy hair)

Read more... )
rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
I saw my consultant again today.  She is pleased with me, says not to worry about my recent run of colds "there's just a lot of nasty things circulating, and your bloodwork is completely normal" and is giving me six months this time before seeing her again. She reminded me as always that I can always call the department if I am worried.  I told them that I still remember very clearly what it was like getting ill in the first place, and I certainly will get in touch if I think it is happening again.  After all, my confidence in my knowledge of my own body has been borne out, if not in the happiest of ways! 

Bone marrow samples will continue at 3-monthly intervals until three years after "end-of-therapy".  We are now at 11 months after end-of-therapy, so nearly 1/3 of the way there.  I asked if I was right to assume that they would call me if there was anything to be concerned about in the bone marrow samples, rather than waiting for my next appointment, and she confirmed that this is the case.
rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
I lasted until 8:30am before accidentally finding out the result of the US presidential election (in that the people running the Economist app thought pushing a notification onto my phone was the best way to share such news).

I think I am less shocked and upset than I was by the Brexit result in June, but more scared. In June, I found it extremely helpful to follow my usual routine: take care of the children, go to work, fix things. My studying went off a cliff though, perhaps because it didn't immediately affect anyone but me, unlike my work and home obligations. Luckily the module concerned wasn't one I needed to do more than pass, so handing in one duff assignment didn't matter too much (and no, I wasn't going to ask for an extension or accommodation for "I am deeply upset by Brexit").

"Until such time as the world ends, we will act as though it intends to spin on." For me that means sticking to my ongoing efforts to recover my health and effectiveness, take care of my family and finish my degree. Do the job in front of me, as best I can, and (re)build my capacity to do more in the long term.



rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
Between the end of the cold, and last week's travel to see family, and working full time this week and getting an OU assignment in, I am pretty shattered. I declared it a weekend off, or as much as I could manage, when I got home on Friday.  Yesterday I took Nico to dance classes and a birthday party and then went to bed for the rest of the day.  Today the only thing I have to do is take Nico to gymnastics.  Charles is having a friend over, but Tony is in charge of supervising them.  I may get some of my to-do list done, but only if I really want to.  I may just read this week's acquisitions: The Hanging Tree (Rivers of London 6) and Penric's Mission (thanks [personal profile] davidgillon for tipping me off to the latter).

Dance classes plural were because Nico took a trial tap class after his existing ballet class.  He was a bit reluctant to go in, so I sat in the studio with him (with the teacher's permission).  He joined in a bit and then came back to me and said tap was great but he couldn't join in again until he had his own tap shoes that fit properly.  I rewarded this excellent negotiation with a trip to the dancewear store and the entire tap class uniform, not just the shoes. 

The dance school is on the top 1.5 floors of a 3-storey building on our nearest main road.  The dancewear store takes up the other half-floor, and on the ground floor is a cafe and a paint/wallpaper store.  All the businesses are independent, but being a student at the school gets a 10% discount on dancewear, and (I discovered yesterday), spending money in the dancewear store gets us a 10% discount in the cafe.  That made me smile.


rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
  • I still have a cough.  I've progressed to the point where I am no longer stupid ill with it, I just ... cough a lot.  I'm not getting enough sleep as a result, but I'm definitely getting better.  Just slowly.
  • I went for my quarterly bone marrow sample on Wednesday; it was probably the least-unpleasant experience yet.  I got the doctor who is particularly skilled at taking them.  I'm pretty certain if there was anything to worry about I'd have had a phone call by now, so I am not worrying.
  • The children had half-term off school, and we sent them to holiday club for 3 days and took 2 days as family holiday to Sheffield where the newest and tiniest cousin is.  As usual, the highlights of Sheffield for the children were, in order: a) trams b) Ponds Forge swimming pool c) their family (especially tiny cousins).
  • I took the children swimming twice in Sheffield.  Charles's birthday party earlier in the month was the first time I've been swimming since getting ill, and I had almost forgotten how much I like it.  Taking them to Ponds Forge is more walking-around-in-water than swimming, especially as I was solely responsible for non-swimmer Nico, but it was fun anyway. 
  • Between cough and holiday and sleep deprivation I am behind on everything and have an assignment deadline on Thursday.  Essay crisis ahoy!
rmc28: (grouchy)
The children have had a day each off school this week due to getting a cold - in both cases a day of rest at home has been more than enough to get them recovered.  Tony seems untouched.

I've been ill since Tuesday night, no improvement in sight, and as of this morning I've lost my voice.  The children found that a lot funnier than I did.

One of my friends from work, who had a similar leukaemia to me several years earlier, told me that she still finds colds hit harder and take longer to recover from than before the cancer.  So maybe it's not surprising.  But so so tedious.  And I keep having to talk down the bit of my brain that panics when I get breathless climbing the stairs, because honestly brain it's much more likely that I'm breathless because I have a stinking cold than because the cancer has come back, and I wasn't breathless climbing the stairs before I caught this cold.

It's not flu and I'm not running a temperature, I'm just bunged up and stupid and fed up.



rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
Seeing In The Heights was amazing a couple of weeks ago (see babble in previous entry), but it also left me completely shattered the next day.  It was both frustrating and kind-of encouraging because I haven't felt that bad in a while. It did make me realise how far I've come that my current "normal" is so much better than e.g. the "normal" of my holiday in May.

This week I caught a cold and had to take two days off work because I had No Brain.  I went back Friday but I was s o  s l o w.  Again, much more like me-several-months-ago rather than me-now.   I have survived helping to run Charles's birthday party today but I've managed little else, and soon I'll have to go to bed if I don't want to feel deathly tomorrow.

Getting enough sleep is really really boring and really really essential.

One practical consequence is that the best day for me to go see In The Heights again is a Sunday.  The show is at 6pm so if I cycle to the station rather than taxi I could be home by 10:30pm.  Of course, that's a school night so not entirely ideal, but more so than the Tuesday matinee, which finishes bang in the middle of rush hour.



rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
Last August, I arbitrarily declared every day after 1st October 2015 "a win, a gift of medical science and care". What have I been doing with that gift in the last year?
  • I successfully completed chemotherapy!  I've had three follow-up tests, which continue to show me clear of leukaemia.
  • I returned to work, and have been working 4-4.5 days a week since April thanks to judicious use of accumulated annual leave. I am about to start working 5-day weeks routinely, and feel reasonably confident about it.
  • [livejournal.com profile] fanf and I did a short course of couples therapy with a Maggies Wallace counsellor, by way of preventative maintenance.
  • I completed a year of Open University study at nearly full-time load, and enrolled on another full-time year to complete my degree.
  • I have recovered a lot of the fitness lost through 5 months of chemotherapy: by no means all of it, but steadily improving week on week and month on month.  For the past few months I've made deliberate, targeted use of my fancy fitbit (ironically, bought less than a month before I began chemo) to measure and motivate myself.
  • I've recently got much better at getting enough sleep, also through use of my fitbit.
  • I've done the necessary admin to get our children into the school and childcare we wanted for them, and the extra scheduled activities each of them wanted.
  • I've just about kept our finances under control, and spotted a pattern of overspending in time for both of us to stop it being a disaster.
  • [livejournal.com profile] fanf and I have kept the children's routines going steadily, and the house just about under control.
  • I've built up a good set of reminders on Regularly to keep most of the plates spinning approximately at the right frequency.
  • I've fallen in love with two musicals, been to the theatre multiple times and taken my children to the ballet twice.

I've said before that my big revelation from serious illness was that the life I'd built was bloody good thanks and I wanted it back.  I think I'm doing a good job of getting there!  Two smaller revelations/reminders were the importance to me of music, and of learning.  In hospital there was a period where I got through each day with a specific playlist and as much Duolingo as my brain would take; even now I try to spend some time every day listening to music, and some time every day learning.


rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
(Because I know I'm not meeting any of my goals any time soon, but if I take the time to look up the earliest possible date I could, it stops my brain running in circles and me obsessively checking the fitbit history.)
numbers )

I am reaching feeling-overstretched again, and I really need to buckle down and be a study-hermit. (Exam in 13 days, EMA for a different course due in the same day, new course books arriving any minute for the officially-starting-1st-October courses.) I've had three migraines in 16 days, and it's a mixture of overdoing things, struggling in the summer heat, and the perennial favourite of Not Getting Enough Sleep.

The fitbit number I am paying most attention to at the moment is the hours of sleep. It's still too low.



rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
We've been holidaying in York this week, just the four of us.  At some point I may post photos but right now I never want to move again.  What we did:
  • visited York's Chocolate Story
  • found a local playground for the children
  • found a man blowing enormous bubbles near the Minster
  • had lunch in the basement cafe of the Treasurer's House
  • found our way to Rowntree Park, and back again via the Millennium Bridge
  • took an evening boat tour
  • visited the National Railway Museum
  • took the bus to Castle Howard and spent a lovely day wandering the grounds
  • had a delicious meal at Mason's with an incredibly nice server
  • visited all three of the Barley Hall, Richard III Experience & Henry VII Experience, and walked around a large portion of the city walls
I couldn't help comparing with Bristol a year and two weeks earlier: short version is I was much less breathless, but much more easily tired.  However, I did at least have more stamina than in Llandudno 2.5 months ago.  I did crash one day mid-week and had to spend most of an afternoon and evening zonked out on the hotel bed.  Sadly that was the day we went to the NRM: I left early and got very little out of the time I did spend there, so I think I will need to go back again sometime.

I think that was the last time I will ever book all four of us into a single family room for more than one night; we all need more alone time than was possible to achieve, and I'm giving up on all but essential plans for the weekend as a result, plus it gets ever harder to get the children to sleep when we are still awake in the same room. (And they still wake up at least an hour before I want to.)  I think either adjoining hotel rooms or holiday cottages / apartments are the way to go, even if it does cost more.


rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
Today's appointment with my consultant went well: my blood counts are apparently "perfect" and the marrow samples show nothing under microscope. (They are still waiting for the specialist unit in London that does the DNA test to return results.) My next appointment with her will be in four months, a little upgrade from the three-monthly pattern we've followed since I finished treatment.

I cycled to hospital and then on to work, and I stopped at the M&S in the hospital to buy nice things to share with my colleagues, as tweeted:



I still get overheated when exercising and am finding it actively unpleasant when the temperature rises above 25°C (I used to like the heat once, when I was a lot less fat). I've taken to carrying wipes so I can literally mop my brow when I finish walking or cycling. But at least these are problems of being active and mobile!


rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
These probably all deserve their own post, but it's highly unlikely they're going to get them.
  1. I loved the new Ghostbusters, which we finally saw last night. It is made of joy and friendship, and I was highly amused by the villain's motivation and the response to his monologue of justification. Chris Hemsworth was clearly having the time of his life.
  2. I am enjoying being sociable and enabling the children's social life so much that I have slightly overscheduled myself and had to ask Tony to take over something for me this afternoon so I can remember the pacing myself part of recovery.
  3. In October I am going to get very busy indeed with studying (it eases up in June next year) and expect to have essentially no spare time outside work, study, and family commitments.  I am currently in the glorious summer break between being a hermit for cancer & recovery reasons and being a hermit for study reasons.  (Some of the children's social life comes with social life for me, and I am declaring date night with Tony and a monthly pub visit as also essential family commitments.  So not a complete hermit, but a lot more hermit-y than the last couple of months.)
  4. I lost patience with trying to work out how to upgrade my cheap spare phone from Jelly Bean for purposes of enabling C's desire to play Pokemon Go, so I have an even cheaper PAYG smartphone preinstalled with Marshmallow arriving today.  I don't think I need two spare phones, so if anyone is more keen on navigating the thrilling world of rooting phones than I am (or just could use a phone and are willing to use an older android version) then let me know and you can have the older one for cost of postage. (Old phone now claimed.)
  5. My dad came for a short visit and I managed to schedule him most of a day each with each of his grandchildren, and they all seem to have enjoyed the experience. 
  6. Adventures in smoothie consumption continue: I have discovered that I do actually prefer yogurt + milk with my veggies, rather to my surprise. I have built up a little collection of frozen veg and fruit in the freezer to make prep easier / avoid wasting fresh veg that goes off before I eat it.  The little blender does struggle if more than half the content is frozen, so I've taken to making up a bottle of ingredients in advance and leaving it in the fridge to defrost overnight.
  7. I've managed to get my fitbit goal up to 7,900 steps; we walked both ways to the cinema yesterday (with a stop at Mee and I for dinner on the way out) as well as me taking children around earlier, so I hit double that.  My legs are letting me know this morning that they are Not Impressed.
rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
This week has been full of them: the first day I realised something was definitely wrong with my breathing during/after exercise, the first time I saw a doctor about it and had a suite of blood tests ordered, my first ECG (which came back normal).

This weekend last year I packed to go on our family holiday to Bristol, knowing something was wrong with me; but also knowing that blood test results would take a while to come back, my blood pressure and ECG were fine, and anyway Bristol has a large hospital if I got suddenly worse. 

I'm really glad I made that decision to go: we had a great time, we visited the zoo and Clifton Suspension Bridge and @Bristol and the SS Great Britain; we found lots of Shaun-the-Sheep models and followed various trails around the city to find them, and although I kept getting weirdly out of breath, it just slowed me down a bit, it didn't stop us. 

We made a lot of memories of having fun together as a family that week. I never got round to posting here about Bristol, because I ended up in hospital a couple of days after we got back, but the holiday memories were a comfort then and now, the last golden days before I got really ill.

It's nearly another fortnight to the anniversary of my diagnosis.  I see my consultant a few days before then, to get the latest bone marrow test results.  I'm glad it's that way around.  I'm pretty confident about the results: I still feel like I am getting continually, if slowly, better.   Today I cycled Nico to a party over in Fulbourn, 10km each way, which I'd have found mildly challenging before I got ill.  I might have to spend the rest of the day in bed, but it was worth it.
rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
Work:
w/b 13/6 - planned day off 16th
w/b 20/6 - planned day off 23rd for election, off sick with migraine 21st-22nd
w/b 27/6 - planned day off 28th for my birthday
w/b 03/7 - planned day off 6th & 9th
w/b 10/7 - planned as a full week, off sick with migraine afternoon of 14th & all of 15th

Two migraines in less than a month is a bit concerning, although the first was blatantly stress-related and the second almost certainly so. I've been having trouble sleeping the last couple of weeks, which won't have helped. I have acquired a prescription for sumatriptan which should at least make them more manageable, and promised my doctor to work on my sleep and my stress-management.

I have been social! As mentioned previously I went to a party and saw lovely people on the 18th. On the 26th I ventured to London to meet up with [personal profile] kaberett AND [personal profile] recessional which was just wonderful (both the company, and the strangely giddy feeling of travelling around London alone, responsible only for myself). On the 2nd I had birthday drinks in the Carlton which was pleasingly well-attended and delightful, if also an exercise in pacing myself and presenting a good front. On the weekend of the 8th-10th the four of us trekked over to High Wycombe for my brother-in-law's 40th, taking in a ballet for children on the way there, and a related ballet workshop for tinies on the way back.

I've also been ferrying my children around for their social lives and engagements (there are a lot of summer birthdays) and the next couple of months are pretty booked up with one thing or another.

I've changed my fitbit daily steps target from the default 10,000 to something I'm actually achieving most of the time (currently 6,000) so I get the positive feedback of hitting that target most days rather than hardly any. I then worked out a nice nerdy systematic approach to increasing the target so I can work back up to 10,000 in a sensible way. (No more than 10% increase a week, no more than 3 weeks out of 4, and no increase unless achieving the step target on average over 28d AND on at least 23 of those 28 days).

Tomorrow is my next bone marrow sample, and I will see my consultant for the results in a few weeks. This time a year ago, I was just beginning to notice an odd shortness of breath after running up the stairs, and had had a mysterious run of migraines. I still can't run up the stairs.


Today's bird: Hen Harrier
rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
I had birthday drinks in the pub this afternoon with many assorted lovely people.

I am so tired now, but it was utterly worth it.

*goes flop*
rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
Content note: weight changes, body image
(This one is a bit more fraught for me than yesterday's, but I still want to note it.)
Read more... )

Today's bird: Shoveler
rmc28: Rachel standing in front of the entrance to the London Eye pier (rmc-june16)
This morning I snipped off the last bit of cracked thumbnail.  Each of my rounds of chemo left a thinned, weakened strip across all my nails, which moved slowly from nailbed to tip, and when it reached the tip, it would crack very easily.  I usually keep my nails short, but that wasn't enough to prevent cracks and even small pieces snapping off under even mild pressure.  Just another tiny indignity of the whole process.

One crack, on my left thumb, kept extending itself back down the nail: I would catch it on something, and back it would go, down into the apparently-normal nail growing after all the chemo was over.  All the other weak patches were gone months ago, but that crack just kept renewing itself.  I've taken such care over that nail the last few months, trying not to catch it on anything, keeping it trimmed short, and finally, finally the very bottom of the crack has reached high enough up the nail that I've been able to cut the last of it off.  Normality restored at last.


As for my hair, I never lost it all, but it thinned out dramatically during chemo.  I estimated about 80% of it fell out. I'd leave hairs on every pillow, like a cat shedding.  I was so glad I'd had Tony clip it short in advance, it would have been unbearable to leave shoulder-length clumps in the same way.  Hair went from the rest of my body too - arms, legs etc.  Not hairless, but very thinly covered.

In January, after the last round of chemo, it started growing back.  My head felt like a dog with a winter coat growing in, two distinct lengths. I remember trimming it all back very short just to make it tidy, and then again (a little longer) when it was shaggy and unbearable.   I want to grow it out again, at least back to shoulder-length, so I've gritted my teeth and got through the shaggy stage and it's suddenly settled into something that is acceptably tidy with no effort from me.

And suddenly I've discovered that my hair is curly and springy now, instead of straight. It looks quite good (see userpic) and I don't dislike it.  It just feels unfamiliar, all the time.  I'm still waiting to feel like it's normal.


Today's bird: Merlin


rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
I did absolutely nothing for the local elections last month, apart from go and vote. 

A couple of weeks ago I decided to volunteer a very limited amount of time for today's referendum (for my local LibDems, who are campaigning for Remain) and took the day off work, as part of my ongoing "burn leave to keep effectively working part-time" plan.  So I have done two shifts of telling today: the first was in muggy but dry weather; the second was in pouring rain, including a very nearby lightning strike at which I screamed rather embarrassingly.

I am now back in bed and would rather like to sleep from now until the result is clear tomorrow.  At best tomorrow I will feel a faint sense of relief rather than anything actually positive about the whole exercise, and at worst I will feel extremely worried and miserable.  (And then I'll pick myself up and carry on because I still have Stuff To Get Done no matter what happens.)


Today's bird: Coot



rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
I went to a short meeting at school to confirm arrangements for Nicholas's start in September.  They are being more flexible than when Charles started: for the first ten days of term, they are offering half-day drop-ins for the new starters, but leaving it up to parents which days and how many sessions to sign up for, suggesting a minimum of two.  Then they are starting the children full time, in three waves.  Nicholas is in the last wave, presumably because he's among the youngest.  So we are able to start sorting out logistics, what days off we will need, giving notice at nursery, and so on.

Charles's class ran an assembly for the rest of the school, showing what they've been working on.  One of those things was filming and editing montages of themselves doing sports, and Charles's montage was one of the ones selected to be shown.  I was terribly proud :-)

Tony and I began our couples counselling with Maggie's Wallace, which seemed to get off to a good start.

I went out and socialised last night with lovely people.

Although I was very tired this morning, I have managed to be sensible and pace myself and get essential things done but not exhaust myself.



Bird of the day: Lesser White-Fronted Goose
rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
This is the first time I have done such a thing since I got ill last summer.

I had three days of training (in Cambridge city centre, so pretty convenient) and then two in the office.  I am not actually meeting my criteria for trying to work full-time yet: my study hours are still less than they should be and my Regularly dashboard is still mostly in the red, but I failed to organise taking a day off in good time, and decided to treat it as a learning experience.

I learned that it was survivable but pretty exhausting. I must make sure I book a day off next week.  I also decided to drop T'ai Chi for the rest of the term as I have made it to half the classes so far, but too often by Friday lunchtime I am just too tired, and it's one less thing to worry about.

I have at least been keeping up my daily Duolingo habit much better in the last two weeks.  I decided to add Swedish, because while a Finnish course does not (yet?) exist on Duolingo, Swedish is an official language in Finland, so I will at least know something when we go there next year.  I also discovered a Welsh course has been added sometime in the last few months so I failed to resist adding that too.
rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
We just got back from a week in Llandudno, in this rather nice pair of holiday apartments, with my mum, stepdad and my younger two brothers.  It was spacious and nicely presented, a short walk from the station and almost next door to a well-equipped play area.  I know the area fairly well from many childhood visits to my grandmother, who lived in Rhos-on-Sea, and I'm enjoying introducing my own children in turn.

We originally planned and booked this holiday last July, when we were all at my mother's home for a long weekend, and not even the earliest signs of my cancer had appeared.  I've been looking forward to it ever since it became likely I would be well enough to still go.  It was a little experimental: we've not done a holiday in this mode with extended family before, and there was a bunch of admin and planning beforehand to make sure things went fairly smoothly, but I think it paid off well.  An adult:child ratio of 3:1 definitely made things easier!

Highlights for me were:
  • a trip on the Ffestiniog railway to Porthmadog, where we spent a few hours with my aunt and her partner, who'd driven over from Machynlleth
  • seeing Bill Bailey at Venue Cymru
  • spending several afternoons in bed resting/sleeping, knowing there were lots of other adults to play with the children, and feeling so much better as a result
  • discovering a little model railway on the West Shore
There were a whole load of other things I would have liked to do were I fully fit, but I am working on accepting my current limits and it was really very easy to rest and relax and sit around talking with my family and all that good stuff.

One less fun thing that happened was that Charles got temporarily lost while I was on the way to the seafront with him and Nicholas one day, but he did exactly the right thing once he realised he'd got separated from us.  He went up to the sales desk in a large shop and asked to use their phone, gave them my mobile number (which he memorised some years ago), and got through to me to tell me where he was.  The shop turned out to be signed up to a lost-child protocol for the whole town, which meant shortly after I arrived at the shop, so did the local police.  They noted our details and gave me some very polite but firm advice about keeping my children close in a busy tourist town, and agreed with me that Charles had been very sensible.  I was moderately embarrassed on my own account, but very proud of Charles and made sure he knew it.

The other less fun thing was that I had an OU exam in Cambridge on Friday morning.  I came home alone on Thursday evening to get a good night's sleep, and went straight from the exam to the railway station.  I left Cambridge yesterday lunchtime in grey gloom, and arrived back in Llandudno in glorious sunshine just in time for dinner.  Nico and Tony met me halfway back to the house - I heard a small voice shouting "Mummy! Mummy!" and was then obliged to carry an armful of excited three-year-old all the way back while he told me in detail and at volume all about his day.

(I also ended up getting into a really interesting and pleasant conversation with the person sitting opposite on the train from Chester to Llandudno; I love it when that happens, and the journey flew by.)

I'm quite tired now, after the third long train journey in as many days, but hopefully I'll be fine again after a good night's sleep.

rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
I think my physical fitness is still gradually improving - my cycle and walking commutes are getting a little smoother and faster and less tiring each week, and it's perfectly reasonable to cycle to hospital and then to work.  What I'm finding though is that exercise, work, childcare, study and housework are all drawing from the same pool of energy and that seems to have stopped growing.  "Pushing through", like I did to get the essay in a few weeks back, is like going overdrawn and then having to rest even more to replenish the shortfall.  I'm still going splat at least once or twice a week.

I seriously considered requesting a formal short-term reduction in work hours, to the point of working out how much it would reduce my take-home pay.[1]  That turned out to be quite a lot.[2]  I'm pretty certain we could cut back enough to cover the gap, but that in itself becomes more work and stress, so it's not as helpful an idea as I first thought.

Instead, at least for now, Tony is going to take on rather more than half of the housework, including taking back the weekday evening meals which I've been doing since the start of the year. The pressure to get the children fed as soon as possible after 6pm seems to have eased up, so eating later (which has happened a few times recently when I've been too tired to cook) seems to be fine.  I think we'll still try to keep weekend menu planning / shopping list generation going though.

I am going to use the time Tony is giving me to rest more, and to study more consistently, which will in turn make me happier and less stressed.  I would rather reduce our income than give up studying; one of the things I learned from being ill was that learning matters a lot to me.


[1] It took me a while to find a calculator that could reproduce my current payslip with the various deductions I have going out.

[2] Woe woe, the diamond shoes of my high income are pinching, I know.
rmc28: Rachel with manic grin holding up wrist with new watch on (watch)
Consultant appointment today: still no sign of cancer :-)

Also fatigue is to be expected and I'm doing well to be doing as much as I am.  Next visit in August.
rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
That Open University assignment I took two half-days off to finish so as to avoid an all-nighter?  I ended up needing both the time off and most of a night.  I got 2 hours sleep and was surprisingly functional on the next day, but it was pretty horrible.  Luckily this came just before a 4-day weekend, but it's been an instructive example of what happens when I try to "just push through" being tired all the time.  It is remarkably like what happens if I try to keep typing through an RSI flare-up without any mitigation: short-term goals can be achieved, but only at the expense of a much longer recovery period.

I am just now beginning to get over that nearly-all-nighter, after a lot more time in bed over the last two weeks than I'd like.  Fatigue is cumulative, and I was pushing up against my limits even before the essay crisis.  So, I'm pacing myself very carefully, and I'm ignoring everything that doesn't have to be done now and doesn't have to be done by me.  I've booked another tranche of 4-day weeks at work (I'm definitely sure now that 3x full + 2x half is the right pattern for that) and am just hoping I can recover enough to think about working full time before my leave runs out.

Things I haven't the time to write about:
  • I saw Captain America: Civil War and on the whole liked it.  Not as much as Winter Soldier, but a lot more than Avengers: Age of Ultron.
  • Our weekend routine is now pretty settled, with activities for both children over both days.
  • My mother and stepfather came for a visit :-)
  • We took Charles to his first theatre production that wasn't aimed at children (A Winters Tale at the ADC, by the ADC) and we will probably take him to some of this summer's Cambridge Shakespeare Festival as a result.
  • This article about how it's not possible to see/read/listen to all the good things, and different approaches to coping with that.
rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
The ongoing return to work
Two more 4-day weeks at work have gone quite well - this is the Tue+Thu afternoons off model.  I have got quite a lot done, some of it urgent and important, without getting especially stressed.  I'm not as fast or as good as I'm "used" to being [as in, pre-cancer], but I'm being good enough, I think.   I have another two 4-day weeks booked, next week with Friday off, and the following week with Monday off.  This will let me find out which pattern is easier. 

I expect I will book another run of 4-day weeks after that though.  I'm still spending large chunks of my weekend days in bed, and rather more of my weekday evenings falling asleep early or sleepily hitting refresh on things without getting either OU study or Duolingo done, or even much reading.  I am really fed up of slow-motion OU essay crises, but I'm in the middle of another one, basically because I was too tired to study for too much of the last fortnight month.  Also, I use the app Regularly to track various self-care and housework tasks (which all need doing at some point - we're not talking make-work here) and I'm in the red on an awful lot there. 

So I'm regarding that as great honking warning signs that I'm running too close to my limits.  I plan to keep on doing 4-day weeks until I get my study hours back where they should be, and my Regularly dashboard back to mostly yellow and green.  I have enough leave left, together with things already booked, to do this until September, so I may as well take advantage.


Physical fitness
I had my second session of beginner's T'ai Chi today, and I'm really enjoying it.  It feels very gentle but focused; I've learned I can do it in a comfortable tunic and leggings, which is what I wear a lot of the time at the moment, and it's gentle enough I don't need to change.

I'm managing the cycling to work via nursery, and walking home via school okay at the moment.  I still get out of breath but no longer as boiling hot; I think I'm gradually getting faster, and it's becoming more routine.  On Monday I cycled to the hospital and back from work for an appointment, and on Wednesday from nursery to Hills Road and back on top of everything else, and wasn't completely flattened as a result.  Even so, like work, I think I'm doing enough right now, and shouldn't look to add anything else until study/Regularly tasks are under control.


Medical
Monday's test was a bone marrow sample.  It was moderately painful and I needed longer to recover before I felt able to go back to work than I would have predicted.  On the good side, they told me they got a good sample without apparently having to work too hard for it, unlike certain of the previous samples I've had taken.  I see the consultant on 10th May (it got moved back, I think because my test was later than originally planned) and as far as I know I won't hear anything before then.  All the external evidence is reassuring though.


... and this has taken me long enough to write and I need to do another chapter of study before I fall asleep.
rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
Last week: 1 Bank Holiday, 1 intended half day that I took off because of migraine, 2 half days and then a full day to finish the week.
This week: 2 half days and 3 full days.  This is the first week I have actually worked 3 full days since returning to work, and it was more bearable than I'd feared.  I could track the cumulative toll by the effect on my after-work achievements:

Monday: made supper, did my Duolingo, did lots of studying
Tuesday: made supper, did my Duolingo, did some studying
Wednesday: made supper, did my Duolingo
Thursday: made supper, wrote a blog post in bed

Today was the second half day, and I spent the afternoon resting in bed, with a pleasant interlude catching up with my mother on our ~weekly phone call, before doing the evening nursery run.  I then made supper but have returned to bed shortly afterward. I may yet manage my Duolingo. Tomorrow is busy, with multiple things for the children, and a date with [livejournal.com profile] fanf in the evening, so I am deliberately taking it easy this evening and Sunday.

Next four weeks:
w/b 11/4 & 18/4: Tuesday and Thursday afternoons off
w/b 25/4: Friday off
w/b 2/5: Bank Holiday off

They're all four-day weeks but I expect the 4 consecutive days to be harder.  I'm going to review again on 4/5, or sooner if I get another migraine or other indication I'm overdoing things.


Other notes
I have my first follow-up bone marrow test on 18/4 and my review with my consultant on 26/4, so I will probably be extra-twitchy between the two.  Objectively I am continuing to improve steadily, there is no plateau or reversal of progress, and I've even stopped needing to change my clothes on arrival at work.  But I'm extra-aware at the moment of every time I get out of breath when cycling or walking or climbing stairs; I am 99.9% certain it's because I'm pushing just hard enough to keep improving my fitness, but the 0.1% is fixated on "breathlessness means cancer".   Charting my progress in these posts is one way of keeping that 0.1% in check.


rmc28: (BRAINS)
As well as all the caring-for-sick-child, I woke up this morning with a migraine.  (I am only managing to type this with the brightness turned way down on my laptop.)  Not entirely surprising after multiple disturbed nights and higher-than-usual amounts of exercise, but entirely frustrating as well as painful.

I suppose ... at least I'm well enough to overdo things enough to get migraines?  The last one I had was in Bristol the week before I went into hospital last summer. 

*scales back immediate plans even further*


Right now I don't even know if I will be able to work tomorrow; plus I need to check with nursery about when Nico can return (I expect not until the antibiotics are finished, but not sure, and not going to cycle there to find out.)

rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
2 half days, 2 full days and thankfully a bank holiday.

It's the first time I've worked two full days in the same week.  Monday went fine, but I was seriously struggling Wednesday afternoon and went straight to bed and splat once I got home.  I was really glad yesterday was a half day for me, and that I now have a long weekend and then a very easy week, before I try again at the multiple full days the week after. 

I found myself saying "I literally should not run before I can walk" in conversation on Wednesday about exercise and how much I miss running and how I keep looking wistfully at local fitness classes.  I am still finding it funny, because it's true.   Though I do have an exercise class starting in a few weeks: a beginners tai chi class on Friday lunchtimes.  It's local-to-work and cheap, so if I'm not up to doing it when the time comes, I won't lose much money.

One of the things we covered on the Maggies Wallace course was reminding ourselves how far we've come: because I'm back at work I'm bumping up a fair bit against my memories and established habits from before I got ill.  But if I compare myself now to how I was at the worst parts of being ill (the first week of treatment; the week back in hospital in November) I'm doing really well

I've also gone through the handout on managing fatigue from a session I missed and it's essentially stuff I already know: (sleep, pacing myself, eating well, doing enough exercise to build up strength but not enough to exhaust myself, identifying things that replenish energy and things that deplete it, etc etc).

From week after next I want to see if I can manage working 4 day weeks (using annual leave)
- which also implies a cycle ride and a walk every day
- plus keeping up my studying
- plus keeping up my share of housework

... and I shouldn't look too far beyond that for now, even if I do have longer-term goals in mind.



rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
The plan is to fan this spark into a flame
Week 4: 1x full day, 4x half day
Week 5: 3x full day, 2x half day

In practice:
Week 4: 3x half day working at home, 2 days off sick
Week 5: 3x half day, 1x full day, 1x day off to look after child

Week 6 will be 2x full day, 2x half day, 1x bank holiday.  That completes my phased return and I will officially work full time from Monday 28th March.  In practice, due to bank holidays and school holidays (leave I would have taken anyway even if fully well) I will be working:

w/b 28/3: 1x bank holiday, 3x half day, 1x full day
w/b 04/4: 3x full day, 2x half day

and we'll review at the end of *that* if I need to use more half days for the next two weeks or if I feel able to actually work full time.  I finally checked my remaining leave and I have enough left to keep up a 4-day week for several months, which definitely takes the pressure off.


Argh

2016-03-16 09:59
rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
I was over the cough enough by Thursday to work from home the rest of the week, and to take Charles around some Science Week things on Saturday, and to meet up with [livejournal.com profile] beckyc for Bolshoi Ballet at the cinema on Sunday (all of which kind of deserve their own post) and I was gently cracking on going to work in the actual office this week and then ...
  • I managed to take the only set of bike keys with me to a thing at the hospital yesterday afternoon, and Tony needed them to collect Nico from nursery
  • so I tried catching a bus back to work after the thing, which in theory takes about 20 minutes, and in practice after an hour in horrible rush hour Cambridge traffic I disembarked and hoofed at speed to the nursery instead, and got there 10 minutes before closing, go me
  • and then I managed to coax a 3yo to walk nearly 2km home, go both of us
  • I have an essay crisis this week and really needed to work on it yesterday evening, and the whole bike-bus-nursery palaver didn't help.
  • and then Nico would not go to sleep 
  • and then started crying like in pain and saying his ear hurt, and we checked him over for signs of illness and injury but found none
  • so we gave him paracetamol anyway, because he was in pain
  • and he did go to sleep almost immediately after that, and though he woke up an hour later pain-crying some more, he went back to sleep fairly quickly
  • and this morning he was his usual full-of-beans happy self
  • so this morning I took him to nursery and mentioned the ear thing
  • and got sent home with him because the rule is no nursery for 24 hours after a dose of paracetamol
And argh, I appreciate the reasoning, and I want the nursery to be as minimal an infection source as is possible with large numbers of small people with no sense of personal space, and I would hate it if Nico got suddenly iller and made the other children ill, but it was a sudden and unexpected inconvenience.  Mostly I wish I'd known/remembered the rule before I cycled to nursery and back.

Working from home while in charge of a healthy and active Nico is pretty difficult at the best of times (looking after an ill Nico is actually easier because he tends to be quieter and less mobile) so I am not even trying.  I have asked for an emergency day's leave instead.

(and it might mean I get something done on my essay? who can say)

rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
I did not post a review after week 2, but I asked for and got agreement to do two more weeks at 60% time.  I had slightly more energy in week 2 than week 1, but not enough that I felt confident taking on a full extra day's work.

Weekend 1: did almost nothing

Week 2: got rather more done at work, yay. Meals and sleep went a bit better, and I started doing some studying towards the end of the week.

Weekend 2:
Saturday: attacked the studying backlog for the most immediate deadline, went to a PARTY (gasp! socialising!) in the evening.
Sunday: was ded, barely got out of bed

Week 3:
+ much more back in work routine
+ Thurs/Fri especially I was working more intensely than I have since coming back
+ coped much better with the full day on Wednesday (though this might have been because I was working from home, because of child illness, so much less physical effort involved in the day)
- complete splat Tuesday evening: I'd done a load more cycling than usual because of child-illness-logistics, and I came in, ate something, sat down "for 10 minutes" to rest, and woke up a couple of hours later.
- slightly less dramatic splat Friday evening, in that I spotted it coming, made food for me and children early, and deliberately went to sleep as soon as Tony got home.


We had planned to attend my stepmother's birthday party this weekend; on Thursday evening I made the decision to cancel the trip. It would have been 4ish hours there and 6 hours back on Sunday by public transport, or about 3 hours each way driving - but I'm the only driver in the house.  I just didn't think I could do all that, and attend the party, and still be fit to work on Monday.  So I am being sensible and spending the weekend at home (and tackling some more of the study backlog) and trying not to be too resentful.


rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
Good things:
+ went to work every day
+ did all my child drop-offs and pickups, and made supper as planned
+ did some work! answered questions! pointed out a useful tool to a colleague!
+ good meeting with Occupational Health nurse, who was happy with my plan and the flexibilities built into it

Things to improve:
- arrived late every day
- slept through my alarm Thursday morning, after the full day on Wednesday, and arrived really late
- was late with supper Thursday and Friday evenings
- was really tired Friday evening and am still tired today


I think I'm hitting a kind of uncanny valley effect the closer I get to normality, the more I notice the difference between how I am and how I was / how I feel I should be.  Back in January when a bicycle ride to nursery left me tired for the next day and a half, I didn't care about being late to work, or worry about arriving sweaty.

I still think I'm right to focus on building up the physical activity faster than the mental activity, but I'm feeling it today ...

rmc28: (silly)
(It is currently a few degrees above freezing when I cycle to work)
  1. Help! It is freezing cold and I can see my breath in the air! Put on coat, gloves, hat-with-earflaps, and still feel shivery!
  2. Hmm, I seem to be warming up, better take the coat off at the next traffic lights.
  3. My hands are a bit hot, perhaps I should take my gloves off.
  4. Ow! My hands are too cold! Put the gloves back on again.
  5. My head's a bit warm, the hat can come off.
  6. My hands are sweaty! Take the gloves off again.
  7. Still cold, but my hands are ok. 
  8. Actually my hands are strangely warm.
  9. Help! I am suddenly Boiling Hot all over and there isn't anything else I can decently (or easily) take off!
  10. Slow down for remaining journey in hopes of cooling down before arrival.
I have stopped even bothering with the coat, and I am doing much better on the days when I wear a long-sleeved running top for the commute and change into something more work-appropriate on arrival.  Shivery at first, but keeps stages 9-10 fairly minimal.  I need to find better gloves.  (Thinner? Easier to remove?  Maybe I need lightweight mittens or something.)

I didn't use to overheat so much.  I'm hoping it'll pass as I regain fitness, or cycling to work in summer will be no fun.
rmc28: Rachel standing in front of the entrance to the London Eye pier (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 standing in front of the entrance to the London Eye pier (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 standing in front of the entrance to the London Eye pier (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 standing in front of the entrance to the London Eye pier (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 standing in front of the entrance to the London Eye pier (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 standing in front of the entrance to the London Eye pier (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 standing in front of the entrance to the London Eye pier (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 standing in front of the entrance to the London Eye pier (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 standing in front of the entrance to the London Eye pier (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 standing in front of the entrance to the London Eye pier (Default)
Rachel Coleman

March 2017

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