Wednesday 28 October - a bit keen?

These were from a walk I took on Monday in the sunshine.  The village sign stands at the crossroads in the centre of the village and just to the left of it, hiding under a hedge, I saw these lovely purple cyclamen.  I wonder if they had escaped from someone's garden?  The colours in the village are beautiful at the moment - all red, gold and rich brown.

I went to the gym today (while Andrew was swimming) and tried an exercise bike.  I was _hopeless_!  I could just about manage 15 minutes on level 1 before I had to give up.  There was no strength in my muscles at all.  I suppose I shouldn't be surprised after two months of inactivity, but it was definitely a shock.  I shall have to rescue my town bike from the Park and Cycle locker and bring it home to practice on!

Tuesday 27th October - good news from consultant appointment

Just returned from seeing the consultant.  It was good news.  She was very pleased with how I had come through the last lot of chemo and also with my current blood counts (essentially back to normal).  I didn't have to have the bone marrow test today and I have the rest of the week off.
Next week I will be in Addenbrookes on Monday, Wednesday and Friday afternoons having a trial drug that I signed up for right at the beginning of the whole process.  After that there is a week off, probably with blood tests and the bone marrow test, and then we see the consultant again on 17 November.  Assuming all is well then, the next stage is two 3 day inpatient stays for methatrexate treatment, probably about a fortnight apart.  And then it will be December...

Best news is that at the moment all my blood counts are normal so I can be a bit less worried about what I eat and where I go.  Also I have had my medication reduced and been given the go-ahead to do as much exercise as I feel like (within sensible limits obviously).  I'm looking forward to getting back on the bike!

 We had a very productive weekend.  On Saturday Sarah and I made bramble and apple jelly and also bramble and apple cheese (which involved rubbing the pulp through a sieve, which gave Sarah a blister, cooking it for ages with a splatterguard on top of the pan as it looked like hot mud pools while it was cooking, and then potting it and leaving it until November 2016).

In a desperate attempt to rid ourselves of more of the apples from our tree Andrew, his mother and I also made apple chutney.

Friday 23 October - at home, being domestic

I was at the hospital on Thursday (yesterday) and got some good news - blood tests all doing very well so no need to come in on Saturday and I can stop the daily GCSF injections (which stimulate white blood cell production).  No need to go to the hospital again until Tuesday when we see the consultant.  On the downside, I have a bone marrow biopsy booked in for 12 noon on Tuesday.  Oh well...it has to be done.


So today I walked up to the top of the village to deliver a card to a friend who has just had a hip replacement and then walked home via the shop to collect my weekly papers, then after lunch helped Sarah make blackberry and apple (and gooseberry - we found a bag of gooseberries in the freezer and since no-one in the family likes them except me we added them to the jelly mix!) jelly - part 2 with photo tomorrow.  Sarah picked the blackberries in the hedgerows just outside the village boundary. 


This evening we enjoyed fish pie and then Andrew and I played Scrabble (he won, as usual).


I feel it has been a productive but also restful day.  Lovely.

Wednesday 21 October - quiet day at home

So I did get to the art exhibition and to the concert on Sunday.  It was lovely to be out doing normal things.  The art exhibition waas very good with a wide range of styles and techniques.  The concert was lovely - a cut down version of the Messiah (one hour) with some excellent solo pieces.  The soprano soloist was a friend's daughter and the tenor was her fiance.  It was lovely to hear them both sing.

Was at home on Monday and then at hospital yesterday.  No transfusions which was a relief.  However I had my first MRI scan instead.  Having spent Monday and Tuesday morning with nerve or muscle spasms in my back I thought I should mention this to the doctor.  So I had a battery of neurological tests and was then sent for an MRI.  Even with the ear plugs it was _incredibly_ noisy.  I didn't suffer from claustraphobia because I kept my eyes shut!  All clear, thank goodness and later that day the spasms stopped.  Oh well...better safe than sorry.

Today I have been pottering around the house doing very little jobs and spending a couple of hours filing my email - why does it always get so out of hand?  Fell across this picture of me and Andrew that my nephew took when he and his wife came to lunch earlier in the month. 

Saturday 17 October - what a treat: a home lute concert!

Thanks to my colleagues Anna and Marcus we had a huge treat today.  They came to our house and gave us a lute duet concert.  It was fantastic!  Not only was the music fabulous but we learnt a a lot about lute music, lute playing, lute making and also about their preferences among some of the composers.  It was a real privilege having them here.  (As some recompense we did give them lunch first...)


I need to correct something from Thursday's blog.  I failed to read the dates on my appointment card carefully enough and my appointments next week are actually on Tuesday, Thursday and Saturday.  Oops.

Yesterday's hospital visit involved blood tests, a long wait for the platelets to arrive and then a half-hour platelet transfusion.  I suspect that Tuesday will bring more transfusions so I hope to be feeling well enough to drive myself.

Hoping to get to a local art exhibition tomorrow morning for a little while and then to go to the concert for the Come and Sing Messiah in our church at 6pm.  Had my first walk out today for 10 days (have finally shifted the cold) which was lovely.  Feeling pretty good today.

Thursday 15 October - A Big Thank You

Now that I am in a treatment gap it is really time to say thank you to all of you out there who are supporting me - family, friends near and far, work friends, and of course the fantastic staff at Addenbrookes.  I am more grateful than you can know for all the love, encouragement, visits, emails, letters and cards, texts, lifts, gifts etc.  So thank you all very much!


I probably won't post every day at the moment as there isn't that much news, but I shall try and post at least 3 times a week.


I now have the schedule for this treatment gap.  I was at the hospital yesterday for blood transfusions and platelet transfusions from noon to 5:30.  (Thankfully an old friend came at lunchtime to eat her sandwiches with me.)  I will be back tomorrow and then Monday, Wednesday, Friday next week at least for blood tests and probably for transfusions/other treatment as necessary.  The doctor has upped my dose of Dalteparin (to deal with the blood clot) again, so I have a slightly fatter syringe of that to inject, and I am also now taking GCSF so support the white blood cells (another injection).  I am beginning to feel like a pin cushion.  Also, I am amazed at how the toughness of one's skin varies - in some places the needle goes in easily and in others I just give up!


So, today is a day off at home.  I still feel pretty good (apart from the cough hanging on from last week's cold) and I am looking forward to doing some gentle tidying on my desk, a job I have been putting off for some time.

Monday 12 October - end of 2nd block of chemo!!

You'll be pleased to hear that:
1.  I have finished this block of chemo after the lumbar puncture today
2.  I no longer feel quite so exhausted
3.  I have mostly got rid of the headache
4.  I have tomorrow off (before blood tests and blood transfusions on Wednesday afternoon).


Thanks to the lovely staff of E10 for making sure I got my procedure this afternoon...and to Sarah and Andrew for doing the transport.

Friday 9 October - Sorry about the gaps

This is the week when the cumulative effects of the chemotherapy have finally started to hit.  Well, I suppose I couldn't escape for ever...


I am feeling increasingly tired, both physically and especially mentally.  I have also developed a permanent blistering headache.  The irritating thing is that 2 paracetamol seem to keep it under control - paracetamol is contra-indicated because it brings your temperature down, risky for cancer patients for whom the clearest indicator of infection is a raised temperature.  By Wednesday I had been prescribed codeine,  which oddly does nothing for me.  I spent the rest of Wednesday when I got back from hospital in bed.


Thursday was marginally better - had a visit from a work colleague (sorry I was so slow-witted, Kate) and only had a short nap after lunch - even had the energy to watch Gareth Malone's The Naked Choir in the evening.


Today I was expecting to go in at noon but was called in for extra blood tests earlier - today was the intrathecal chemo (via lumbar puncture) and my clotting levels were outside the safe range.  The doctor I saw was concerned about the high dose of codeine I was taking and sent me for another ct head scan to check for a bleed on the brain.  Thankfully no bleed present - phew!  So she decided that since paracetamol works for me I should take my temperature and take paracetamol if in the normal range but try to take as little as possible.  So I had tomorrow's chemo today and will have the intrathecal on Monday.  So arrived at the hospital at 10:45 and left at 6:00.


The only other extra side-effect this week is that I am genuinely losing my appetite.  Very sad state of affairs.


On the plus side I still have my hair and my sense of humour!

Monday 5 October - week 4 of 4 about to commence

Gosh,  I have failed to post since Thursday last - sorry.


Firstly, it is Dalteparin, for all those of you who are medically minded and will notice!


The cold persists.  I wore a face mask on Friday and Saturday too - peculiarly difficult to drink or eat when wearing one, or stop them riding up over your eyes!  I now have a cough, but still no temperature, so that is all good.  I survived the intrathecal (lumbar puncture) on Friday with only one nerve nicked and actually really enjoyed Saturday as a friend came down and diverted me with tales of the All Blacks and her son's possible employment tracking king cobras in the Thai jungle (she is not surprisingly not very keen on this).  I drove myself again on Saturday - very nice not to be keeping anyone else hanging around.


I've had a pleasant weekend.  I actually did some sewing yesterday (took up a skirt for my mother-in-law) and had a pleasant longer walk round the village (did nothing for the cough though).  Today we had my nephew and niece to lunch who brought photos of their grandson - due to both my parents marrying twice and me being the child of the second marriage I have a sister who is 89 and nephews and nieces who are older than me.  I am beginning to think that 'cousin' is a useful catch-all term!


So I am feeling pretty ok as I gear up for the last week of this block of chemo.  Still got my hair (photo that my nephew Michael took to follow when he sends it to me), still eating, feeling tired but not crushingly so, will be glad to get rid of the cough and looking forward to the fortnight off before the next consultant's appointment.  I might even make more chutney and do some more sewing!

Thursday 1 October - I love Thursdays

I love Thursdays because this is the day I _don't_ have to inject myself with the Deltaparin against blood clots.  That's because I have my lumbar puncture on Fridays and they don't want me to bleed too much afterwards!
Driving myself to Addenbrookes yesterday was amazingly liberating - the first time I have driven since 30 July this year.  It felt a little strange but good.
Today was interesting.  I have picked up a bit of a cold from Sarah (no 2 daughter who has returned from London after a summer job) and duly told the desk when I arrived.  They promptly issued me with a face mask (peculiarly uncomfortable) and when I wasn't actually having the chemo or blood taken I sat outside the ward in order not to risk infecting the other patients.  I shall probably have to do the same again tomorrow as I still have the cold.
While I was sitting outside the ward I had a long chat with the husband of another patient who has the same leukaemia I have got.  It was humbling to hear their experience which was considerably less straightforward than mine.  In particular she has been very ill during her treatment.  It made me very grateful for the fact that I am withstanding the treatment well so far.
Gratitude is a large part of every day at the moment - for the skill of the doctors and nurses, for the kindness of friends and acquaintances, for the support of my family and especially Andrew.