Monday 30 November - St Andrew's Day - Day 1 of hospital

I have taken some pictures of my bed and the view (I have another window bed) but I can't get them to upload so it'll have to wait until I get home and have access to tech-savvy daughter.
So the chemo started after lunch and will finish at 2:30pm tomorrow.  It's a violent yellow colour - looks pretty toxic.  So far no ill effects other than the constant trotting to the loo occasioned by the fluids that I am getting - 1 ltr/4 hours mixed with sodium bicarb to keep the blood alkaline.  I had a couple of visitors around lunchtime (thanks Tony & Avril and Kate) and spent the afternoon reading.  Sadly I have lost the ability to catnap, so the prospect of being disturbed at 10pm, 2am and 6am for observations and 8:30pm, 12:30pm and 4:30pm to have the fluids changed doesn't especially appeal.  I will appreciate my own bed when I get home!
The staff on D6 all remember me (good or bad thing?) and it is lovely to see the familiar faces.  As usual I am very grateful to be relatively well on the whole - other people are not.  Bless you all for the support I feel flowing from you.

Sunday November 29th - there is a bed!

I've just had a call from the hospital to say they have a bed for me so I shall be going in this evening and hopefully coming home on Wednesday.  Thanks for all the good wishes and sympathy over the wait.
Still, at least it meant I was here for the Christingle service at church this morning.  The Brownie Owls and Sixers and Seconders had made 150 Christingles and the collection will go towards the work of the Children's Society.  There was a lot of lovely music, some of it with recorder accompaniment and some with music group accompaniment.  A very nice family occasion.

Saturday 28 November - still waiting for a bed for the next lot of chemo

So, I found out what the plant was (thanks Steve and no 2 daughter Sarah's reverse Google imagesearch) - a tillandsia cyanea.  It is still flowering.
I am still at home waiting for a bed at Addenbrookes for my 3 day chemo blast.  They have had a lot of emergencies so getting a bed on either of the haematology wards is not easy.  (I can't complain about the emergencies - after all I was one at the end of July).  I wouldn't want to have the Oncology Bed Manager's job for all the tea in China.  It must be a nightmare.
Anyway, while I have been waiting I have done useful things like start cutting back the beech hedge - it needs cutting back quite fiercely so it is definitely a secateurs and clippers job.  Luckily I can reach the top from the taller stepladders.  I've done about the first 6 ft so I should be able to work my way along it by the spring!  I've also been making Christmas cards - very therapeutic. 
Andrew has put the tree lights up for Advent - lovely.  On Tuesday we can put the wreath out and put the wooden Advent calendar out.  It's a Traidcrft one that you add figures to every day.

Tuesday 24 November - now I know what I will be doing in December!

A quick question before I start.  Does anyone know what this plant is?  I was given it with a very helpful label that said 'green plant'.  Now that it is flowering (purple of course) I'd really like to know what it is.

Yesterday I spent over 4 hoours in Addies in the Department of Nuclear Medicine.  I had some radioactive material injected and then had to return after 2,3,and 4 hours for blood tests.  The most fun bit of this was having both arms measured with a Geiger counter to check that the stuff was circulating properly.  I discovered today when we saw the consultant that the purpose of the test is to determine how quickly my kidneys eliminate stuff so that they can fix the dose for the next lot of chemo.

The consultant was happy - I am still in morphological remission.  Next I have a 3 or 4 day in-patient stay for high-dose methatrexate (I might really lose my hair this time) followed by blood tests every other day for a fortnight and then repeat the chemo and the blood tests.  So that's the next month organised.  I could go in as early as tomorrow depending on whether the Oncology Bed Manager can find me a bed.  So I have packed my bag just in case and I will spend tomorrow morning trying to think of all the things that someone else might need to do if I am not around this week.
I also visited the Maggie's Wallace Centre.  Maggie's is a voluntary organisation that supports cancer patients with information, classes etc.  The centre at Addenbrookes is in the residential block behind the car park and is a very restful place - glad I went.

Friday 20 November - bone marrow test suprisingly pain free!

I am very impressed with the lovely Hungarian doctor on the ward.  The bone marrow test was uncomfortable but in no way could I call it painful.  I will definitely ask for her if I have to have another one! 
Sarah and I hitched an early lift at 7:15 with Hazel (friend in the village who also works for the University) as Sarah needed to catch a train to Birmingham at 9:01.  I took the opportunity to do some early Christmas shopping, since I am not sure what the next month holds in terms of chemo.  I also managed to get attacked by a large purple wheelie bin precariously perched on a sloping piece of pavement.  I thought I would just have a bruise but 20m further down the road I realised that I had managed to lift a flap of skin on my hand which was bleeding profusely!  There followed a quick dive into Boots (lucky they open at 8am) for antiseptic wipes and plasters and the kind assistant helped me open all the packaging, though very properly did not attempt to do anything with the wound.  The nurses on the ward cleaned it up properly later.
Andrew picked me up from the hospital at 2pm and I went to Morrisons (supermarket) for the first time since July.  It was good to do something extremely normal.
So I am trying to sort out a few things for Christmas in case the consultant next Tuesday wants me to do the first in-patient stay next week.  This year's Christmas will have to be much more low-key - no bad thing I feel.

Monday 16 November - all change

Blood results were pretty good yesterday so appointment schedule has changed.  I am now going for my bone marrow test on Friday and a consultant's appointment next Tuesday (was supposed to be tomorrow).  Can't say I'm looking forward to the bone marrow test but I am delighted with the results.


I made it to church yesterday to sing in the choir for the first time since the end of July.  My voice was more than a little rusty but it felt very good to be there.  We were fortunate to have a visiting preacher - Father Nicholas Wheeler - who has spent the last 8 years in the City of God, a slum area of Rio.  It was good to hear from him about the people of his parish and the changes they have made in the time he has been there.


Today Eleanor (no 1 daughter) came down from London for lunch - lovely to see her.  It was even nicer to feel well enough to drive to the station and collect her!

Friday 13 November - recovering slowly

I have felt really tired both physically and mentally all week, but do slowly appear to be recovering, thank goodness.  I was at the hospital for blood tests on Tuesday and Thursday - good results with the counts going up again on Thursday.  My next visit is on Sunday.  I am still not sleeping especially well (wake up about every 3-4 hours and if I wake after 5am have trouble getting back to sleep at all) and my feet particularly continue to be troublesome but I managed to walk to the next village (c 3/4 mile) to a friend's house and back yesterday afternoon and had no trouble walking round the village this afternoon.

 Best news is that the painters finished yesterday.  RH picture is while we were in the middle of putting everything back last night (well except for the books and DVDs - we finished that this morning).  It was so nice to sit on the sofa again - couldn't believe how much we'd missed it!  We also took the opportunity to get rid of a few books and games so the whole room looks a lot less cluttered - same colour, but clean.

Monday 9 November - lovely weekend but still sandbagged after Friday's treatment

Boy this stuff packs a punch!  I am still feeling knocked for six by last week's chemo -physically and mentally.  It was a shame not to feel better as we have had some lovely visitors over the weekend.
First my nephew and his 15 year old daughter who had been to an information session in Cambridge came to lunch on Saturday.  It was lovely to see the pair of them without the rest of the family - quieter, definitely.
Then Becky (no 3 daughter) arrived with her boyfriend Matt (very nice) for supper and to stay till Sunday afternoon.  Andrew cooked on Saturday night: mushroom soup, apricot stuffed pork with onion jus accompanied by roast potatoes, carrot & celeriac puree and spinach, followed by creme brulee and cheese.  Matt cooked Sunday lunch: cucumber gazpacho to start followed by a smoked mackerel, horseradish and cream cheese pate served on mini Yorkshire puddings - yum. (sorry, no pictures)
Today Andrew's aunt Lily has been for lunch (butternut squash, apple and stilton soup) with her long-standing friend Jen.  It was lovely to see them both, it has been at least 4 years and probably longer since we last saw them (Jen only lives in Bedford but Lily lives in Scotland).
Since Lily and Jen left we have had a lovely afternoon moving the contents of the living-room since the painter is arriving at 8am tomorrow to paint it.  There were a lot of cobwebs, spiders, dead woodlice and a lot of dust.  I dread to think what it will be like putting everything back later in the week.  I really ought to send the curtains to the dry cleaners but I think that might have to wait for the spring!

The books and CDs and several coffee tables are all piled into what is currently my study (used to be a 2nd sitting room for the girls), those plants that are small enough are on the dining room table and the pictures and curtains are in there too, and the living room looks very bare.  The plants will have to go out on the patio tomorrow (currently standing in front of the French windows) all except for the Monstera Deliciosa in the foreground - when we moved the bookcase it was leaning on it simply lay down on the carpet so we are a bit worried about breaking it if we try to take it outside.
After this afternoon big respect to anyone who has moved recently.  Just clearing one room was definitely enough for me.

Thursday 5 November - sandbagged

Ok.  I have now discovered that this drug - Nelarabine - is stealthy.  I feel fine the day I get it, if a little tired in the evening, but the next day - wham!  On Tuesday I woke up feeling really tired and couldn't get up till 10am and then had legs like lead all morning.  This morning the effect was about twice as strong: I have just managed to get out of bed at 13:45, feel really quite wobbly and also have strange crawling sensations in my limbs.  According to the sheet on side effects, fatigue affects 50% of patients and the crawling/tingling sensations are also quite common.  Thanks God the last dose is tomorrow as I suspect that I will feel much the same, if not worse, on Saturday.


Sadly it is also a dull, drizzly day here - not even a little bit of sunshine to cheer things up.  So I will have to find things to do that don't require too much energy or brainpower and probably spend a large fraction of the afternoon on the sofa!


Encouraging sing - I managed to go to choir practice for the first time last night.  It was lovely to be there  and even nicer to discover that I can still sing, even if not much power. 


Sense of humour still intact, you'll all be pleased to hear.

Wednesday 4 November - hospital again

Thanks to Phillip and Sheila for the lift in to Addenbrookes today and to Andrew (Gee) for the tea and chat before I went for the chemo.  It was a good chat!


Chemo went very smoothly today - the drugs were there and ready and I was hooked up fairly quickly - I arrived just before 13:00 and was out of the hospital at 16:00.  I didn't notice any side effects of the Nelarabine (I have finally figured out how to spell this drug!) at the time, but now (11pm) I am definitely feeling very sleepy and a little wobbly.  This drug can have neurological side effects so the staff ask questions about my neurological functioning before they give it to me.  I have noticed an increase in neuropathy in my fingers and feet, but not enough to be serious.


I'm looking forward to the day off tomorrow!

Monday 2 November - back to the hospital

Back to the hospital today for the first dose of Nelabarine.  It was a slightly complicated journey.  Sarah was taking me in our little red Polo.  Thankfully we stopped at Morrisons for petrol on the way there rather than Sarah going straight to Addenbrookes (getting stuck there would not have been funny).  So when the car wouldn't start again after filling up at least we were only 15 minutes from home and the helpful village garage and only 15 minutes from where Andrew was meeting a friend for lunch.  Sarah and I managed to push the Polo into one of the shopping parking spaces at the petrol station with the help of a very friendly woman (who pointed out that none of the men on the forecourt had offered to help!).  So Andrew and Dan from the garage turned up, Andrew managed to get the Polo going and drove it back to the garage while I followed in Andrew's car and then he drove me to the hospital.  I was only 45 minutes late!


The chemo was ok.  No ill effects so far, though I have to have a neurological questionnaire before each dose as it can have some pretty nasty side effects.  Finally escaped at around 5:30pm and had a remarkably easy journey home through the traffic - not nearly as much as on a usual Monday.


The Polo reappeared just after we got home, fixed.  Apparently it needed a new coil pack.  Sarah was relieved to discover it wasn't just her driving and that is was a comparatively easy fix.