Thursday 31 March - neuropathy supplementary

One of the interesting things about the leukaemia treatment is that each of us on the day ward, even if we are on exactly the same treatment regime, reacts in a very individual way to the drugs.  So I thought I would tell you a bit more about the neuropathy and what it does to me.  I hope you find it interesting.


The drug that causes the neuropathy is vincristine, of which I have had 2g in one dose on days 1,8,15 and 22 of the last month's treatment.  So right now as I type the top two joints of my fingers are cold, numb and tingly.  The skin on the ends of my fingers is sore and cracked, which makes typing quite slow.  I am super-sensitive to heat through my fingers too - can't take the toast out of the toaster because I burn myself.  Dexterity is much reduced, so doing buttons or picking up pins is very hard.  My feet are cold from the toes to under the ball of the foot (read frozen).  Again the skin on the ends of the toes is very sensitive, so stubbing my toe on things is best avoided unless I really want to find myself in orbit.  Vincristine also causes joint pain and affects the nerves in the bowel (joy). 
Overnight I managed to sleep for about two hours to 12:15.  I then needed the bathroom and after that had to get up for a bit.  The drug effect on the bowel for me is that it becomes very uncomfortable to lie down because my digestion thinks it is daytime and is working away.  So I get up for between 1 and 2 hours until things sort themselves out at which point I can go back to bed.  So I was back in bed at 03:15, slept until 04:30 and then woke up.  My fingers and toes were cold and throbbing and I had joint pains in my right ankle and right hip and also in my biceps and shoulders which stopped me going back to sleep but I made myself lie there until 05:45 before getting up.
When I first get up I am very stiff-legged and lurch from foot to foot for a few minutes before things get moving.  My feet don't bend very well at the moment so I have to hold the banisters going downstairs.  Thankfully we have grab rails in the shower and outside the front door from when my mother came to live with us after her stroke.  I am finding them quite useful at the moment.
I am going to a wedding in Oxford on Saturday.  I may have to wear trainers as they support my stiff feet better than any other shoes.  I will also need to take my walking poles - tomorrow's job is to decorate them with navy and green ribbon to match my hat!
I am also suffering from the after-effects of the steroids.  They did their job during the treatment in protecting me from the chemo, but now they produce their own side-effects as they work theirway out of my system.  They make me retain water so that my ankles, calves and lower thighs swell and get tight, making walking tricky.  They also cause skin sensitivity.


This is not meant to be a whinge, just an indication of what the neuropathy means.  One of my fellow sufferers has had this sort of neuropathy and had talked about it, so when it came on suddenly on Saturday at least I knew what it was.  It is totally manageable - the ward doctor checked me very thoroughly on Tuesday and agreed that I was doing everything I could.  They could give me painkillers or other drugs to counteract the effects but a. they don't always work and b. I am temperamentally disinclined to take yet more drugs if I don't need to.  Thankfully the doctor agreed with me!

Wednesday 30 March - neuropathy continues

So I still have the neuropathy - cold and tingly fingers and toes.  Apparently the leg swelling is a steroid reaction, as is the skin blotches.  I was in the hospital for blood tests yesterday (all good) and the doctor gave me a thorough check over including testing all my reflexes.  She is not too worried about these symptoms which should wear off in due course.  I am sufficiently unsteady on my feet when walking that I have looked out the walking poles which just give me the necessary balance and confidence.
I have had my clinic appointment brought forward to next week so that I can go straight on to the next part of the chemo, consolidation 3.2.  That will have me in the hospital for 5 days in each of the next two weeks.
I hope I don't sound too whiny about all this.  It struck me this morning that my overwhelming feeling most days is one of immense gratitude - for all the care I have had from Addenbrookes, for all the support I have had from family and friends, and most of all for still being here to enjoy sunny days like today.

Easter Sunday 27 March 2016 - a new and rather unpleasant side-effect

We have had a lovely weekend with Sarah, Rebecca, her boyfriend Matt and Andrew's mother Gladys with us.  Gladys and I went to two coffee mornings in the village yesterday where she won me a beautiful hanging basket in the raffle.  While we were doing that the youngsters had a tour of Great Gransden church tower with my friend Phillip the steeple-keeper.  They were able to go right to the top of the tower and admire the graffiti (from when poor bored home guard lookouts were stuck up there!) and then visit the bell frame and clock mechanism before  having a go at ringing the bells.
Today has involved church, Easter egg hunt and a lot of rather nice food.  I made salted honey ice cream from a new cookbook Andrew got - very nice.
Sadly over the last 36 hours I have developed a new side-effect: serious neuropathy.  I guess the steroids were protecting me before that.  So I now have sore, stiff feet, swelling legs and very sensitive skin.  What a pain.

Tuesday 22 March - last chemo of this phase!

So I have had the last dos of vincristine and daunorubicin for this batch.  Yay.
I had to wait some time to have the chemo as my neuropathy in hands and feet has worsened since before the weekend and my consultant was consulted on whether to go ahead with the last does.  Of course she said yes, as I should be able to manage the side effects.  I finally escaped the ward at 4pm having arrived at 10am and had a very pleasant day:
chat with a couple of other long-termers
visit from work colleague with family and work news
lunch
wrote a couple of letters
chilled from the steroid high!


After the hospital Andrew drove me round to the Jobcentre Plus so that I could get my new Fit Note and payslip scanned and added to my account details.  It was only yesterday that I discovered that you can do this in person rather than sending them off to the office in Wolverhampton who then send them in the internal mail to Peterborough which takes 9 working days.  Why didn't someone tell me sooner?!


Planning more tidying and more pricking out tomorrow. 

Monday 21 March - pleased that this is the last week of this batch of treatment

Good morning all!
This is the last week of Conslidation 3.1 so I have chemo tomorrow and bloods on Good Friday.  Next week it will just be blood tests Tuesday and Friday.  I am getting quite tired so it will be good to have a small break.  There are all the usual side-effects as well as the steroid impact on my sleep, or lack of it, but it is all manageable.
I quite like being awake in the middle of the night and getting through my chores - the house is starting to look a little tidier!  I actually slept much better last night - 2 hours and then a solid 3 hours.  Of course I felt groggy when I got up at 6am but you can't have everything.
I had a lovely day yesterday.  The village I live in is full of talented and interesting people.  One of the many musicians had organised an acoustic session in the pub.  So I was able to walk 10 minutes round the corner, drink Adnams Southwold (1/2 pint only) and listen to live music and chat to the folk I know here.  You're probably wondering why I am drinking beer - my taste buds have thrown a wobbly and water tastes odd.  Beer still tastes like beer - what do you think my consultant will say?!
After the live music a friend and I had a fantastic hour with a small business owner opposite the pub who does hat hire.  My friend Hazel's elder twin daughter (my youngest daughter's best friend) is getting married in Oxford on 2 April so we went to sort out our hats.  Liz managed to find both of us something wonderful and we had a huge laugh into the bargain!
We are expecting a houseful for Easter so Andrew already has the menu sketched out!

Saturday 19 March - end of week 3 of this 4 week block of chemo

So, only one more week to go of this treatment round.  I'm glad.  I am getting quite tired from the lack of sleep and general hyperactivity caused by the steroids.  I have chemo on Tuesday next, blood tests and anti-fungal treatment on Good Friday and then the active treatment stops.  After that it will be blood tests twice a week waiting for the counts to recover so that I can go on to the next bit. 


I am relieved that the steroids have been relatively benign.  I admit I was very anxious at the thought of taking them again after my experience as an in-patient last August.  However, the ability to get up at 6am and indulge in steroid-fuelled housework obviously works off some of the excess energy!  I think it is just easier coping when I am at home and can organise my own time and not worry about disturbing a ward full of people.  It has been quite mentally productive as well.


Away from the treatment I have had a lovely couple of days.  Yesterday Andrew's mother and I went to the garden centre at Brampton and stocked up on geranium plugs to grow on for the church fete in May.  The staff there were fabulous: found the compost I wanted and put it into the car for me, went out to check the deliveries to find my geraniums, ordered a clematis for me.  It is so nice when you get really good customer service!  Later yesterday a colleague came to visit.  It was lovely to see her and to catch up with work, her family etc.


This morning after the hospital I went into the centre of Cambridge to meet a friend and run a few errands.  No 3 daughter Rebecca was graduating MA today at the Senate House so I was able to see her through the fence.  Actually we totally disgraced ourselves - I climbed on the wall on the outside and she climbed up the inside for a kiss and a picture.  She got told off by the Proctor!  She will be at her dinner now and is then staying in College overnight with lots of friends from her year.

Wednesday 16 March - sorry for delay, tech problems

I had hoped to upload some pictures of my weekend but my technical skills have deserted me under the influence of steroid sleeplessness so you'll just have to put up with text.


Treatment continues to go well.  No more allergic reactions and everything on Friday and yesterday went smoothly.  I will be having more treatment including another lumbar puncture tomorrow and blood tests on Saturday.  The steroids do at least support my blood results which have been really good.  Last Friday I had my first piece of pink steak for 8 months.  It was fantastic!  (Sorry about the food obsession - that is also the steroids!)


I had a visit from my oldest friend on Saturday and Sunday.  Caroline and I met on our first day at Oxford High School in September 1969 and have been friends ever since in spite of the fact that her family emigrated to Edmonton, Canada in 1970 and she has lived in the US for over 30 years.  I last saw her 6 years ago but it might as well have been yesterday.  Over the years we have probably seen each other on average once every 3 years and when Andrew used to go on business to the West Coast he often used to stay with her.


It was good to have the mental boost as the side-effects were pretty revolting over the weekend - now much improved.  Caroline's current passion is birding so we went for a couple of walks which were rather like going out with a small child.  Every 10 paces she'd stop to look through the binoculars or take photos - to be honest about my level over the weekend.


I seem to be managing the steroids ok at the moment although I don't sleep much, usually about 3 hours/night when I am taking them (which is Tuesday to Friday).  However, being at home is much better because I can work off the steroid highs on the housework or tidying, which is useful and satisfying.  Also I find even if I don't sleep I can at least stay in bed and rest comfortably until my brain takes off at about 6am.


Worst side-effect this week is the neuropathy which makes my fingers cold and tingly and my feet likewise.  It'll pass though.

Thursday 10 March - Andrew's bake fest and telly have kept the steroids under control

So after being more than a little hyper earlier in the day I have managed to calm myself down with a walk before lunch, lunch, and an afternoon on the sofa watching 'Back in time for the weekend' http://www.bbc.co.uk/programmes/b06zyt4z - I have now seen the 50s, 60s, 70s and 80s and can't wait to watch the 90s.

While I was chilling, Andrew had a bake fest in the kitchen. He has made bread for my sandwich tomorrow (he makes nearly all our bread now).





He has made two batches of Parmesan biscuits so that I can take some into the ward tomorrow.

And he has made this yummy looking pear tart for pudding - Parmesan short-crust pastry, thin Bakewell tart filling (sponge made with ground almonds and a little cream rather than flour), sliced pears and a crabappple jelly glaze.  I'll let you know how it tastes!

Thursday 10 March - steroids starting to kick in...

This is week 2 of this phase of chemo.  So far the chemo side effects are not too bad - the usual cold feet, lack of temperature control, digestive upsets etc, all of which I have developed techniques for coping with.  However, I am back on 4 doses of steroids a week for this phase and they are just starting to affect my sleep patterns.  So yesterday and today I only slept for a total of 5 hours (in two batches) and find I am awake at 6am, mind whirling and have to get up after about 30 minutes.  I have already watered the plants, cleaned the windows in a couple of rooms, cleaned the downstairs bathroom etc etc and it is still only 7:20am!  I shall doubtless crash later.

I thought you might like to see the lovely Mothering Sunday gifts from my girls: flower posies from church on Sunday, cards and a reminder of last August when I had my Mohican.  It was such a special day and now that my hair is getting very thin (definitely comb-over time) I love the reminder of that Sonic the hedgehog look.  I have put the picture in pride of place in the hall.

Not to be outdone, Andrew brought me a very belated birthday present (well, it _was_ my birthday last September!)  He has had new copies made of some of my very favourite slogan t-shirts.  This means that the ones I have been wearing for years can now definitely either only be worn for gardening or even go in the polishing bag.  I can never decide which is my favourite, but maybe 'Hardy Perennial' speaks to me most today.  Next week it might be the two about missing my mind!

It has been a good week treatment wise.  I was in the hospital on Tuesday and need to go back tomorrow for blood tests. Next week will probably be three visits.  My blood counts are holding up so Andrew and I went out to lunch yesterday - how normal.

I have finally been dragged kicking and screaming into the 21st century and have acquired a smartphone on which I have learnt to do _some_ things, courtesy of Andrew and the girls. 

 I still can't link to my Google calendar, sigh.  The other annoying thing is that I can now take pictures while I am out and about but have signally failed to be able to transfer them to the computer and hence post them on the blog.  The computer will open them in Windows Picture viewer (via USB link) but not in Irfan View.  Hints gratefully accepted.  Oh, the phone is a Samsung Galaxy A3 for the techies out there.

Saturday 5 March - end of week 1 of consolidation 3.1

I am currently doing consolidation 3.1 - a repeat of the chemo I had when I was first diagnosed in August last year.  It's not too arduous - week 1 was chemo on days 1 and 4, lumbar puncture ( totally painless!) on day 3 and a return today (day 5) for a different anti-fungal drug to the one that turned me into a radioactive tomato - no problem with the new drug.  Weeks 2 and 4 should only be 2 or possibly 3 visits to the hospital - chemo on days 8 and 22 and blood tests later that in the weeks.  Week 3 will also have another lumbar puncture.  I am also back on the rocket fuel steroids but so far haven't felt especially loony - I'm sure the staff and my nearest and dearest will let me know if they think I am going off the rails!


So this week has been quite benign.  I still feel pretty good though I am getting more tired and my temperature control is totally up the creek.  I drove myself to the hospital today and have done a few small jobs around the house, but am trying to be sensible so that I don't overdo it.


It's been a weird week weatherwise here - beautiful sunshine alternating with snow and sleet.  I do have some photos of both but am having the usual technical trouble uploading stuff.  When not in hospital I have been sewing, reading and catching up with friends - lovely.

Tuesday 1 March - I've been described as looking like either a radioactive tomato or a Belisha beacon

Today I had a reaction to one of the drugs they gave me, an anti-fungal called ambisome.  It was almost instantaneous - the nurse worked out that I can't have had more than 1ml before I reacted!  I felt hot, wheezy, my throat started to feel tight and I had an achey back and shoulders.  The reaction from the staff was swift - turn off drug, inject hydrocortisone and piriton into the line, dose with paracetamol, visit from doctor...Once they were sure that the reaction was under control, the two nurses who were dealing with me laughed.  Apparently I had gone so red in the face that one thought I looked like a radioactive tomato and the other like a Belisha beacon!


In other news, I had a very satisfactory clinic appointment today and have started the next round of chemo which lasts 4 weeks.  The consultant was pleased with my progress - always good.The chemo drugs were administered safely.  I start the steroids tomorrow.
 
It's a shame that you don't get to enjoy the feeling good bit for longer before the next round of treatment starts.  To round off my two weeks of feeling perky I drove myself to Colchester last Friday to see no 1 daughter who was in residence at the Firstsite art gallery and had a lovely weekend, including going to church for the first time in ages (_and_ we sang 'Guide me o thou great redeemer' my all-time favourite hymn.).  However, the two weeks of feeling really good that I have had have firstly left me physically in a really good place to start the next round of chemo and secondly have left me mentally in a good place.  When things get tough (as I'm sure they will) I can look back on these two weeks and know that I can feel like that again.