Tuesday 29 December - post Christmas catch up

Sorry not to have posted over Christmas - no time or energy really.  Health wise I have been improving a little every day after the last lot of chemo and am starting to feel quite human again.  (Apart from yesterday, when I had a day in bed feeling exhausted - I think I am fighting off a cold).  I have been at the hospital regularly for blood tests: today for the first time since coming home I needed no treatment so got out of the hospital in a fairly record 1 3/4 hours instead of the 6 hours we spent there on Sunday (mix up over the lab testing of one of my sets of bloods...).
Christmas was very restful for me.  Andrew cooked lots of fabulous meals, my daughters and mother-in-law variously wrapped presents and crackers for me, helped prepare food, washed up and did such housework as was essential (not much).   We played a board game on Christmas Eve (Lyric - highly recommended), and had time to look at old family photos and record Andrew's mother's memories, and watched 'Paddington' together.   Sadly I didn't make it to church, but each service attended was reported on by the girls.  Apparently this year's nativity play on Christmas Eve was a classic with the angels only being able to find the letters O and Y in GLORY to start with so that the shepherds were summoned with a very suitable 'OY', and a very shy youngest king.
Two daughters and Andrew's mother have gone home today.  We are looking forward to friends being with us on New Year's Eve and then chemo starts again on 5 January.
My overwhelming emotions from this Christmas are gratitude - to the medical staff who are overseeing my treatment, to my family, friends, neighbours, colleagues for their support - and appreciation of the little pleasures in life: watching the birds in the garden, seeing the full moon on Christmas Eve, hearing the church bells, finding primulas flowering in the garden...

Tuesday 22 December - home for Christmas!

Sorry about the gap in entries - I haven't really felt like writing.  I came home on Sunday evening but spent Saturday and Sunday feeling pretty grim and some of it is still persisting.  However, I know from the first dose of the chemo that it will pass.  I have no more chemo now until 5 January so there will only be visits to the hospital for blood tests between now and then.
We are expecting all the family here by Christmas Eve.  I hope you all have a very blessed Christmas.

Friday 18 December - a day to be quiet

The chemo finished last night and I am now taking the folinic acid which should clear the rest of it out of my system.  they do blood tests twice a day to check the levels of the drug in my system.  It has to get below a certain level before they can let me home.  I am still being pumped full of fluids to help with the chemo clear out.
As last time, I have been feeling rather queasy and slow today.  I had a visitor and a phone call but have otherwise been quite quiet and snoozed a fair bit.  I brought in the Lord of the Rings films to watch - excellent for hospital as they are so long! - so will watch the 3rd one later.
I continue to admire all the hospital staff who keep the place running and remain cheerful and helpful even when things are difficult.

Wednesday 16 December - peaceful day in hospital

I came into hospital yesterday afternoon and have now been on fluids since 4am today.  I am hoping that they will start the 24 hours' chemo later today.  So far I have had some blood taken and seen the doctor.
I have had an enjoyable day though, chatting to a young ordinand from Westcott House (one of the theological training colleges in Cambridge) who is on a week's placement on this ward prior to doing a day per week with the chaplaincy team.  He and I have talked about all sorts of things - his 5 week old daughter, where he is going for his curacy, holidays in Germany, the Book of Common Prayer, what it is like to be a patient on this ward, his previous jobs, my job...I hope he wasn't bored, but he did come back voluntarily after lunch so probably not.

Monday 14 December - no bed today

Sadly no bed today for me.  The upside is that I got another nice dinner at home with Andrew and Sarah - there is always an upside.  So we wait to see if there is a bed tomorrow and if not I have an appointment for bloods on Wednesday.
Interestingly the last dose of methotrexate must still be having quite an effect as my anti-thrombin levels are still falling (requiring another dose of cybernin today) as are my neutrophils (requiring slightly more care over what I eat).
Plus points are that I have mostly finished writing the Christmas cards and have begun to clear out some of the old files on my computer - it's amazing what a little boredom can do!

Wednesday 9 December - a little more clarity about the rest of the month

Thanks to a call from my specialist nurse I have a little more clarity about the plan for the next couple of weeks.  I am currently in Addenbrookes 3 times a  week for blood tests.  On Friday I shall also have another nuclear medicine test to check the rate at which my kidneys can clear stuff out so that the consultant can determine the necessary dose of methotrexate.  Then I should be going in on  Monday 14 December (always assuming there is a bed) for the second high dose of methotrexate with its attendant vast quantities of fluids, probably staying in Addenbrookes until Thursday or Friday next week.  I can't decide if it is better to know what I'm expecting or not.  I suspect it is, because at least I will take the right clothes and things to do with me (I'm thinking of taking the Lord of the Rings films...)!
At least this means that I will be home for Christmas week, though I imagine I might still have to trot in and out to Cambridge for blood tests.  I am sorry that I will probably miss a good deal of the usual pre-Christmas activities - carol singing in the village, carol service, school carol service - either through not being here or not feeling well enough, though I hope to make it to church on Christmas Day.  I am also very much looking forward to having all 3 girls and Andrew's mother here with us - we intend to take a look at some old family photos among other things.

Sunday 6 December - lovely family day

It has to be said that I spent a great deal of yesterday in bed - didn't even bother getting dressed - though I did manage a reasonable supper without the sickness returning.  Progress.  Today was a little better in that I got up and had a shower and got dressed.  Mind you, after breakfast I went upstairs to lie down for 5 minutes and woke up nearly 2 hours later with the scent of roast chicken tickling my nostrils.  Some 5 minutes!
Because we hadn't had Andrew's birthday dinner on Friday we had birthday lunch today instead, and very nice it was too.  A starter of coarse pate, a few cold cooked asparagus spears, sundried tomatoes and lemon and garlic olives with a piece of melba toast and then the chicken with all the trimmings.  We were to full to have the poached plums for pudding so we'll have those tonight.  We had Rebecca and Andrew's mother here so it was a very nice family lunch.

Saturday December 5th - Home!

I was discharged from Addenbrookes yesterday evening (Friday) - what a lovely feeling.  I had been brilliantly looked after but it was so nice to sleep in my own bed again.  It was Andrew's birthday yesterday but I wasn't much company for him as I couldn't even eat supper, just watched while he ate his.  We'll just have to treat Sunday lunch as his birthday meal instead (hopefully by then I will be up to eating again.
This lot of chemo has left me very tired and, for the first time very nauseous.  I barely ate anything on Thursday and Friday and slept most of those two days.  I slept much better last night and at least managed some breakfast and am now approaching some minestrone soup for lunch.  I have no other side-effects but the exhaustion is quite impressive - I can do something for about an hour and then have to sleep.  I have an appointment at the hospital at 09:30 on Monday - I hope I will manage to get out of bed for that!
So now there is about 2 weeks' wait for my counts, particularly my clotting levels, to recover and then we do it all over again just in time for Christmas.  Now that I know how I will feel afterwards I need to start doing my Christmas prep now as I may not be here/fit to do it the week beforehand.


Just in a week here the leaves seem to have come down completely.  The view from the bedroom window is now decidedly wintry, in that we can see all the way up the park (in spring and summer the hedge gets in the way).  I find the bare trees have their own beauty. 

Thursday 3 December - Addenbrookes Day 4

I have spent a large part of today asleep or at least dozing - the after-effects of the chemo I imagine.  The other after-effect has been to feel really queasy so I have not eaten a huge amount since breakfast - ginger sponge and custard at lunch and 2 cream crackers and a piece of cheese at supper.  But at least it has stayed down, and it won't hurt me to shed the odd pound anyway.
Good news is that I have been disconnected from the fluid drip!  And better news is that the chemo levels in my blood have fallen below the level needed to send me home, so I have high hopes of going home tomorrow. 

Wednesday 2 December - Addenbrookes Day 3

It was _lovely_ to see Eleanor this afternoon.  We sat and chatted for 2 or 3 hours, punctuated by yawns as hospital is definitely a rather soporific place.  I heard about her current work and plans for the next couple of months.  A real treat to see her.
I didn't get nearly enough sleep last night.  Between observations, antibiotics, folinic acid, new bags of fluids there was a lot of disturbance!  By this morning I was so tired that when I came to at about 8am for the next lot of antibiotics I realised that I slept through the last fluid bag change completely.
So the good news so far is that my temperature is normal and the pH measurements have gone alkaline and the chest x-ray was clear.  The less good news is that one of yesterdays blood cultures showed a bug, though the doctor this morning wasn't sure if this was a real bug or a contaminant and won't have the answer from microbiology until tomorrow.  So if all is good and the blood results show that the methotrexate concentration is low enough the doctor thought I could go home tomorrow evening.  If not, not.
So far the side effects are the usual tiredness and also a touch of queasiness that has put me off my food quite a bit.  Thankfully no sickness yet, though.
I'm looking forward to a pleasant evening finishing my book and then watching the last episode of 'Call the Midwife'. 
Thanks for all the lovely text messages I have had - really appreciate them.

Tuesday December 1 - Addenbrookes Day 2 update

Still on the 5 bedded ward so presumably either someone else has the side room, or they've decided I am not a risk or they will move me in the middle of the night!  A very cheerful radiology porter called Gary took me down for my chest xray - actual xray took all of 5 minutes.  Also a very resourceful porter as he had to work out how to get my pump and drips on the wheelchair, which he did with speed, dash and accuracy!
I've had more antibiotics and am now having another drug with the pleasant thought of being woken at 2:30am for the first dose of folinic acid (designed to neutralise the toxic stuff I've had over the last 24 hours).  Complicated stuff all this.
Looking forward to a visit from Eleanor (no 1 daughter) tomorrow.

Tuesday 1 December - Addenbrookes Day 2

So sadly I had a very high temperature overnight - 38.8.  They get very worried here if your temperature goes over 38deg.  Things swung into action - vast amounts of blood taken from line and vein, swabs taken, doctor seen, antibiotics prescribed.  Thankfully by this morning the temperature had come down to a more normal level - 37.5 - and the swabs indicate a viral fluey cold rather than a bacterial infection.  I don't feel too bad - just a bit hot/cold and achey - but they will send me for a chest xray just in case and also move me to a side room so that I don't infect anyone else.
Otherwise hospital is quite restful once you relax into it - the food is good (I had another pudding with custard today) and the staff are wonderful.  I have read two books and started watching the first series of 'Call the Midwife' which I missed on tv.  It is set in 1957, the year before I was born.  How things have changed.  I have plans for the afternoon - some sewing and making tags for Christmas presents - though I may also just read.

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.

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.

Tuesday 29 September - 1st day of week 3

I spent all day at Addenbrookes today due to the chemo not being on the ward when I turned up at 09:30.  So I had a very peaceful day reading a copy of The Times that someone else donated to me, starting a great book called 'Unapologetic' by Francis Spufford and sleeping for an hour and a half in the afternoon.  I finally got my chemo at 12:30 and escaped at 5:00.  Today I had the cyclophosphamide which comes in large syringes which have to be pushed very slowly into the Hickman line while a 4 hour bag of saline is also running, as well as the much quicker Cytarabine.  The former is weird as I get a strange taste in my mouth as soon as any of it hits the bloodstream, but the taste dissipates as the drug goes in.  Other than that, no immediate side effects other than the usual feeling of being sandbagged (hence the nap).
Tomorrow I am going to drive myself to the hospital for the first time.  Exciting!

Sunday 27 September - yay, it's the weekend!

This is the first day of my weekend - no chemo now until Tuesday. 
Yesterday I spent 4 hours at Addenbrookes having the short chemo and then two units of blood, each of which take 1.5 hours to run.  I was borderline for needing the blood (haemoglobin count of 88 for those who know about these things) but as they wouldn't be seeing me again for a couple of days they decided it was sensible. 
Today I feel remarkably well (perhaps the blood has something to do with that) so I thought it was about time that you could all see for yourselves that I look well too. I am now half-way through this block of chemo and seem to be standing up to it well.  The anti-sickness drugs are very effective and one a day seems to be enough.  My digestion was somewhat affected but the doctor has prescribed something for that which also seems to be working.  My swollen left arm (DVT around the Hickman line) has gone down and so far I still have my hair, though I think it might be getting slightly thinner.  I don't sleep all night but at least when I do wake up (3 or 4 times a night) I go back to sleep pretty quickly.
Today I managed a half hour walk in the sunshine (with hat and suncream) and also made chutney this afternoon ably assisted by Andrew's mother.  And I haven't needed a nap.  So things are good.
As I walked round the village this morning I was struck by the beauty of the autumn colours that are just starting to show in the trees - I am very fortunate to have such a beautiful place to walk.

Friday 25 September - intrathecal no 2

Although I spent wuite a while at Addenbrookes today it was very pleasant.  Andrew dopped me off just before lunch and Eleanor came down from London to meet me, have lunch and sit with me in the afternoon while I had the second intrathecal.  It was great to see her and hear about all her plans - including the great news that she and a friend have won Arts Council funding for some work in Bristol in November.  She was great company and the time went very quickly.  The intrathecal was slightly less pleasant as the doctor manged to touch a nerve while doing it - no lasting discomfort though.  Thanks to Kim for the lift home.

No apologies for posting pics of tonight's dinner - it was fabulous.  Yorkshire trout fillet panfried with almonds, with pommes duchesse and asparagus.



 

Followed by nectarines fried in butter and finished with demerara sugar, cinnamon and cream sherry.  The juice was delicious on the natural yoghourt too.

Thursday 24 September - ooops, missed a day!

Sorry for not posting yesterday - not much to report.  It was an early visit to Addenbrookes: left home at 08:00 and was back here by 10:20 (thanks to Phillip for lift in and for waiting and bringing me home).  Felt really quite chirpy until just after lunch when the chemo sandbagged me and I had to take a nap!  It's incredible - one moment you feel quite normal and the next you can barely keep your eyes open and are liable to fall asleep wherever you are (apparently the Cytarabin has this effect on a lot of people, so one of the nurses told me).  I woke up just in time for a visit from an old friend who used to live in the village.  She has just had a new hip this year and is embarking on an amazing Antarctic eco safari/cruise in October!
Today's hospital visit was equally straightforward - in at 11 and out at 1pm.  I also met up with a couple of the people I was an inpatient with.  It was good to see how they were doing and catch up with their news.  I was determined to be a little more energetic today so after lunch swept the crabapples off up the drive and cleared the windfall apples from the back lawn - slowly.  Nap followed.  However, I did manage a walk round the village after that and I do now feel a little more lively.
Looking forward to a visit from no 1 daughter Eleanor at Addenbrookes tomorrow.

Tuesday 22 September - Day 1 of week 2

Short chemo today.  The outpatient ward was very busy today but one of the nice things about going so frequently is that you get to know quite a lot of the other patients ro meet up with people who were inpatients at the same time.  So today I saw John, who has the same thing I do and is a week behind me in the treatment, and last Friday I saw Pat who was one of my room-mates when I was an inpatient.  I was able to check with Pat where she got her brilliant hat (Suburban Turbans).  Andrew took me in today and Yvette kindly came to fetch me while Andrew was out to lunch with a friend.

I thought we hadn't had a food photo for a bit so here is tonight's dinner - cottage pie and buttered spring greens.  I'm loving that we are into winter comfort food again.  Pudding was poached apricots.  Yum.

Monday 21 September - another quiet non-chemo day

It seems that no chemo on any given day means not as tired too.  I haven't needed a nap yesterday or today, though I probably will again tomorrow.  It was nice being at home and pottering around.  Sarah was home till the afternoon (very pleased because when she went to the optician this morning they finally figured out that she is short-sighted - she says it's nice that it has finally shown up on the tests) and I had a couple of nice visitors.  Dinner was risotto (difficult to photograph).
Back to Addenbrookes and the chemo tomorrow...

Sunday 20 September - quiet day at home with the family

Today was just what the title says.  Sarah and Rebecca turned up just before 12 noon for lunch.  Sarah is staying the night but Rebecca went home early evening.  It's been a lovely peaceful day and I even got some iPad consultancy from Sarah.

Saturday 19 September - flowers and chocolate

 This rose is what I see every morning when I open the front door.  It is called Iceberg and my mother gave it to us when we moved here 20 years ago.  It flowers all summer and well into the autumn, often only giving up at Christmas.  It's a great sight to be greeted by.
I had an early start for the hospital this morning, catching a lift with my neigbour to arrive around 09:30.  Today's treatment was two units of blood which took 3 hours and the chemo which took 10 minutes!  Out of the hospital just after 2:30pm.

The rest of the afternoon was given over to floral pursuits - carrying some stuff down to the church for Andrew and his mother to produce this lovely floral display for the Harvest Festival in church tomorrow.  They are very clever - my contribution was to admire and sweep up thebits afterwards!
Dinner is roast chicken with a baked potato, carrots and greens, preceded I hope by avocado.

Here is the chocolate from the title.  Totally unexpectedly a parcel arrived yesterday from an ex-colleague, Damian Eads, now in California.  It contained a dark chocolate tasting kit from Dandelion who make single-bean chocolate.  The chocolate was mind-blowingly good, thank you Damian!  I woud never have believed how different 3 bars of chocolate could taste and the lemon flavour in the 3rd one was my absolute favourite.  What a treat!

Friday 18 September - 1st intrathecal

Today's hospital visit was the 1st intrathecal chemotherapy.  This means that I had a lumbar puncture so that the doctor could remove 5 or 6 drops of spinal fluid for testing and then insert some chemotherapy straight into the spinal fluid.  The best bit of this is that you have to lie flat for an hour afterwards so I had a very pleasant nap!  I will have one of these a week for the next 3 weeks - every Friday.
The rest of the day has been quiet.  We were looking forward to welcoming an old friend for dinner (chilli) but in the end he had an urgent work need to stay in Herefordshire so we had to make do with fish and chips - battered cod loin and fresh chips from our own potatoes.

Thursday 17 September - quick hospital visit and long chat!

 I thought you might all like to see the view from the 10th floor of Addenbrookes that I get every time I go to E10.  The hole in the picture to the left is where the new Papworth hospital will be when it transfers to the Addenbrookes site in 2017.  Apparently the construction phase will last 32 months.
Below is the view past the massive cranes to the new settlement of Great Kneighton.  Between Addenbrookes and Great Kneighton is a new country park and also the railway line to Liverpool Street.

Apparently some of the housing at Great Kneighton has won an architect's award.  From the outside it still looks a little stark but I guess the greenery just needs to grow in. 
Looking the other way from the corridor outside E10 you get a view of the Gog Magog hills and the wind farm.
It was a really short visit to E10 this morning - all of 25 minutes.  So Andrew Gee (colleague who had popped down to see me) and I went and spent a happy hour or so over a cup of tea in the food court and had a long and wide-ranging chat (everything from PET scanning to Sheldon Cooper and a lot of stuff in between).
The rest of the day has included a nap, a walk in the sunshine, some email and now the pleasant prospect of chicken casserole and dumplings.

Wednesday 16 September - short day at hospital

Thanks to Tony and Avril for the lift in this morning!  It was a very short stay in the hospital today - arrived at 10:45 and out by 12:20.  Just one dose of chemo - a very small syringe full that packed quite a punch.  Once I got home before lunch I had a lovely chat with Rebecca (no 3 daughter) and after lunch I went for a nap and slept solidly for an hour and a half, waking up for a lovely visit from a friend over a cup of tea.

The house is full of lovely smells - Andrew has been making fresh bread again.  I don't know what we will be having for supper tonight but it may possibly include some of the large yellow courgette I found hiding under the leaves this morning.  Why is it that you always miss the ones that then try to become marrows?!

Tuesday 15 September - good news!

We saw the consultant this morning.  I am definitely in remission after the first phase of treatment and therefore she has started me on the next phase!  So I spent 4 hours this afternoon hooked up to a drip...I also came home with another bagful of drugs, for anti-sickness, anti-fungal, anti-biotic, etc etc. 
The next 4 weeks' regime is fairly intense - Tuesday to Saturday each week.  Sadly I will probably lose the purple hair during this phase and will likely feel even more tired.  But after these 4 weeks there will be a 2 week respite before the next phase.
So, that's the plan for the next 6 weeks sorted.
We are celebrating with 'cheesy spag' - a delicious spaghetti sauce of mushrooms, onions, garlic and bacon in a cheese sauce.  Pic below...

Monday 14 September - a good day

It was a good day because I escaped from Addenbrookes before lunch!  I had a lift in with a friend from the village (thanks Karen) and arrived as usual about 08:45.  Bloods were taken and I settled down with my laptop for a long wait.  Although I did not need any more anti-coagulants I did need another bone marrow test.  I am getting quite used to all these procedures.  It looks as though  I may start the next phase of chemo tomorrow, assuming the consultant appointment goes according to plan.  That means a full day at the hospital since the chemo will take 4 hours.
Had a nice lunch with Eleanor and Andrew and then a nap and then a walk with Eleanor in the village before she had to go back to London.  It was lovely to see her.
We slobbed out for dinner tonight - fish fingers, chips and peas - so no photo!

Sunday 13 September - peaceful

What a lovely peaceful day: breakfast with Gladys (Andrew's mother) wh had stayed over; walk to the shop in the sunshine to collect the Church Times; coffee; emails; lunch; nap...

This evening Eleanor came to visit - coming from Bristol where she has been performing - and we had a fabulous Indian dinner: chicken korma, lentil dhal, rice, beans and ginger. 
Lovely to see her!

Saturday 12 September

 I thought it might be time for a picture of the cook - Andrew dishing up tonight's delicious sugar-roast ham, home-made chips (from our own potatoes), Chantenay carrots, asparagus and mushrooms.  Followed by poached fruit.  Yum.

Today we had a visit from my sister Jean and my niece Mary.  They were here from coffee time until after lunch and it was lovely to see them.  Jean has brought me some short stories to read - just the thing for my slightly distracted brain.

It was a lovely day here and the grass has been cut and the windfalls picked up by a young man in the village who is raising money to go on a trip to Kenya at Easter 2016 with his school.

Food, glorious food

Just to prove that dinner is as good as I say - here is a picture of yesterday's main course.  The buttered Savoy cabbage was especially tasty!

Friday 11 September - a peaceful day at home

Started the day by meeting with another school governor to discuss a few things - really nice to do some brain work.  Then had a walk to the post office again and round to visit another friend in the village who is just home from hospital after having her broken hip pinned and plated.  Lovely to see her in her home surroundings, looking more relaxed.
After all this activity (!?) I slept like a log for an hour and a half after lunch while Andrew went to Morrisons and woke up just in time for a visit from Janice and Dave, back for a short visit from the Isle of Man where she is the Vicar of 3 parishes.  It was lovely to see them and to catch up.
In case you are wondering, this evening's dinner is baked cod, pommes dauphinoise, chantenay carrots and steamed cabbage, followed by poached plums or poaches apricots and nectarines with optional cheese if room.  Not surprisingly I have put on half a kilo!

Thursday 10 September

A day in several parts:
Part 1 - another morning spent in E10 in Addenbrookes having bloods taken and waiting to find out whether I needed more anti-coagulants.  The test for that has to go to a different lab, takes longer, and when the result comes back the doctor then has to order the drugs, which take an hour to arrive and need a doctor to administer them.  So I arrived at 08:45 and finally left E10 at 14:40.
Part 2 - dropped in at the Department of Engineering to pick up a 'high value item'.  It turned out to be a gift from my work colleagues in the form of an iPad Air with separate Logitech keyboard cover!  The iPad is even inscribed on the back 'To Rachel with best wishes from all your friends at work'.  Well, to all my friends at work I say a massive 'Thank you!' - I am overwhelmed by the generosity and the love and kindness shown to me.
Part 3 - a visit from Sue Billings, a friend I made years ago when volunteering in the Fairtrade shop in the Free Church in St Ives, which was lovely; Wiener Schnitzel followed by plums poached in red wine for dinner; a happy hour starting to set up the iPad with quite a bit of help from my Beloved (I may chicken out and read the instructions online!)

Wednesday 09 September - supplementary

I thought you might like to see the lovely view I get from my bed when I wake up from my afternoon nap most days (a little later today due to a lovely long phone call from my nephew Andrew in Manchester after lunch).

There are two apple trees outside the window - a Cox's Orange Pippin (very few apples) and a Howgate Wonder (loads of apples!).  At the time I woke up I could also hear the schoolchildren playing in the park opposite after school.

I'm looking forward to pork chops and roasted vegetables followed by stewed plums in red wine.

Wednesday 9 September - 1st walk out!

I have been for a walk!  I went out with Andrew this morning all the way round to the Post Office in the village and back - about 3/4 mile in total.  It was very odd to be walking out in the fresh air, but lovely.  We only met 3 people we knew on the way (this is a village after all) and caught up on a little bit of village gossip and school governor business.
I feel much more human today and have been attempting to do a few jobs (returning shoes that don't fit, tidying up a little in the living room, completing a few bits of paperwork).  I'm sure by after lunch I shall need a nap after all this effort!

Tuesday 8 September

A peaceful day at home, thank goodness.  We had a visit from Sarah (no 2 daughter) who has finally shaken off her cold and therefore thought it safe to come.  Lovely to see her, hear her news and get her to sort out my posting photos to the blog problem - thanks Sarah!  Also had an ex-work colleague of Andrew's to lunch and another friend round later, but all very stress-free. 
Have realised that I really need to tidy up some of the stuff I have brought home from hospital - made a small start by moving some of it to another room!  Have also indulged in a little bit of tidying in the kitchen - evicting some of the unwanted mugs from the cupboard for the NSPCC stall at the Gransden Show.
Heady stuff...

My birthday pics - 1st September 2015

Here are some pics from my birthday last week.  The pink jacket was a gift from my niece Mary and her family - goes well with the purple hair, don't you think?!  Two daughters were able to be with us, Rebecca (the redhead) and Eleanor with the sharp new haircut.  We drank the Bolly that Phil W had given me earlier in the summer - thanks Phil!

Monday 7 September

Well chaps!
I am let off being at Addenbrookes 3 times this week.  They are so pleased with my blood results that I only have to go again on Thursday this week.  Mind you, they did keep me from 08:30 - 13:00 before telling me that!  The problem is that they don't know whether I need more anti-coagulants until they get the blood results back and then they have to order the stuff...  Never mind, today it was useful because it allowed me to visit a friend on another ward where visiting only starts at 13:00. 
So I got home, had a nap and have updated the blog at last.
Still having trouble adding pictures - checked out the help menu but it still doesn't seem to work.  I'll have to wait for no 2 daughter Sarah to come and sort me out tomorrow.

Posts 29 August-6 September

Thought I'd fill you non Facebookers in on last week's posts...
Saturday 29 August
First day at home...woke at 06:30 and got up, went downstairs and did my email, then took Andrew a cup of tea (putting it carefully up a few steps at a time so as not to spill it). His first cup of tea in bed for over a month! The rest of the day has been lazier involving shower, breakfast, lazing around while Sheila George came and Rachel-sat so Andrew could go to Morrisons, lunch of boiled potatoes and butter and cold meat (my mother would have loved that) and then more lazing on the sofa. The Vicar and the Rural Dean have both popped in but otherwise we have been very quiet. Looking forward to asparagus and then cottage pie for supper and hopefully a good night's sleep.
I am hoping that I will be able to have a little walk around the garden tomorrow to admire the sunflower and courgettes and other things.


Sunday 30 August
Another good day though much more tired...
Woke at 05:30 and turned over for 2 minutes till 07:30! Andrew got his 2nd cup of tea in bed...I have definitely been slower today: much sitting on sofa, going back to bed for a nap after lunch, back on sofa now. Andrew's mother Gladys came over around noon and stayed for lunch and till about 5pm. We had fantastic baked salmon for lunch with saute potatoes and sugarsnap peas - I may not be able to eat much at once but I am really ...enjoying the variety of food Andrew is preparing. I hope he is enjoying my enthusiasm! No other visitors, but honesty today that was enough. I had a lovely nap after lunch and have just written a couple of cards and checked FB. I wonder what is on the menu for supper...It's been quite wet here so I didn't get my walk outside - it can wauit.
Tomorrow Phillip George is giving me a lift to my first outpatient's appointment. Andrew will pick me up when I am done.
Thanks for all the lovely messages...


Monday 31 August - first day of trekking to Addenbrookes for outpatient treatment
Phillip George kindly came at 09:15 to give me a lift to Addies. We had a nice chat about guitars and other stuff in the car. Outpatient appt was deeply dull - blood tests, 1 hour of anti-fungal drip and then hanging around waiting for the blood results so that they could decide whether I could go home or not. I was so hungry I went and raided Burger King for fries!
Andrew came to fetch me a...t just after 1pm and we had a very late lunch at around 3:30 after I had had an hour's nap.
Iain Strath and Anne came to visit and I am now contemplating supper - 'red' spag with pappardelle and a yellow courgette from the garden, followed by Boursin, which amazingly for a soft cheese is made with pateurised milk and therefore safe fro me to eat (sorry, food is high on my list of priorities at the moment!)
No appts tomorrow.


Tuesday 1 September - my birthday!
I have had a lovely birthday! I had some great cards and gifts (mention must go to the shocking pink jacket!), saw Eleanor and Becky for lunch (Spanish omelette), had a yummy Victoria sponge birthday cake (courtesy of Becky) woke from a snooze to find an old friend here for supper (Wiener schnitzel after a starter of avocado, salmon and cold pappardelle) and am contemplating sloping off to bed in the next half hour.


Wednesday 2 September

Today's appointment was a bit pants - I was there all day while they worked out that I had a thrombosis in the vein running along the left shoulder and down the left arm (thanks to Harley in ultrasound), and they then couldn't decide whether to do the bone marrow test yesterday or today. I arrived home about 6pm absolutely shattered and slept on the sofa for an hour and then went to bed about 9pm after supper. They gave me anti-coagulants for the thrombosis which have to be self-injected (ok, but more painful that the other injections I have). At least it meant that I was right to mention the tiredness and slight discomfort around the Hickman site.


Thursday 3 September

Another long day at Addies today - arrived at 08:30 courtesy of Hazel and finally escaped just before 5pm! I had a migraine when I got there this morning (my first ever) so they sent me for a CT scan to check that I did not have a bleed on the brain (I didn't). Finally got my bone marrow test after lunch - they had been waiting for the blood results and the CT scan - and then they sent me to ophthalmology to check that the leukaemia hadn't got into my retina (it hasn't). I was very pleased to get home and am looking forward to chicken breasts in lemon for dinner. I feel slightly less like a limp dish rag this evening and am hoping to only spend the morning at Addies tomorrow!


Friday 4 September
Short day at Addies today. In with Sheila Prest (thank you!), blood tests, anti-fungal medication, visit from colleague Adria, and home with Andrew at 2pm. Had a visit from a Guiding friend from Toft, Lucy, whose Aunt Phil had knitted the large colourful squares in my blanket of love. Looking forward to Spaghetti Bolognese with yellow courgettes from the garden.

Sunday 6 September 2015

Hello folks!


I have finally got around to setting up a blog to replace the one on our church page.  I shall post here abut my treatment and about anything else that takes my fancy.
Right now, I am sitting on my sofa (on the blanket of love) in my living room at home looking out of the window at the bird feeders hanging from the crabapple tree and listening to James Taylor's 'Walking Man'! 
It's been lovely to have a couple of days off from the hospital, just chilling at home, and seeing a few friends.