rmc28: Rachel standing in front of the entrance to the London Eye pier (Default)
2016-12-25 09:23 pm

Scenes from my Christmas

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)
2016-12-03 06:16 pm

New glasses!

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)
2016-11-29 12:06 pm

I continue in good health

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)
2016-11-09 06:27 pm

Right, so.

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)
2016-11-06 10:31 am

Weekend off

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)
2016-10-30 10:22 am

My life in bulletpoints

  • 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)
2016-10-21 09:27 am

Coldridden

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)
2016-10-08 08:53 pm

Fatigue - still lurking

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)
2016-10-01 05:19 pm

The first year of the rest of my life

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)
2016-08-30 10:00 pm

Fitbit goal check

(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)
2016-08-19 10:21 pm

Holiday things

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)
2016-08-09 02:07 pm

Still clear

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)
2016-08-07 09:28 am

Seven things

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)
2016-07-31 04:50 pm

Anniversaries

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)
2016-07-18 08:36 pm

Recovery update - last few weeks

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)
2016-07-02 09:22 pm

So. Tired.

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)
2016-07-01 01:32 pm

Vanity: weight and clothing

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)
2016-06-30 01:17 pm

Vanity: hair and nails

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)
2016-06-23 08:04 pm

Election day.

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