R+62 - "Going, Going, Gone" *

After a collapse at home late on Monday 9th January and being moved back to bed, David died peacefully surrounded by his family on Tuesday 10th January 2017.

David fought so hard over the last 21 months and was an inspiration to all around him.

We, as a family, would like to thank you all for your love and support.

We will miss you David.

Love Karine, Charlotte and Alexi  xxx

Going, Going, Gone
Bob Dylan
Lyrics:
I've just reached a place
Where the willow don't bend
There's not much more to be said
It's the top of the end
I'm going
I'm going
I'm gone
I'm closin' the book
On the pages and the text
And I don't really care
What happens next
I'm just going
I'm going
I'm gone
I been hangin' on threads
I been playin' it straight
Now, I've just got to cut loose
Before it gets late
So I'm going
I'm going
I'm gone
Grandma said, "Boy, go and follow your heart
And you'll be fine at the end of the line
All that's gold isn't meant to shine
Don't you and your one true love ever part"
I been walkin' the road
I been livin' on the edge
Now, I've just got to go
Before I get to the ledge
So I'm going
I'm just going
I'm gone


*Bob Dylan- "Planet Waves"- Track 2

R+59 - "Who Knows Where The Time Goes" *

Two days ago I was back in DCU and had a unit of platelets. Back again this morning for more platelets and a unit of whole blood.  The staff there are truly excellent and the atmosphere is always friendly and positive.  Nothing ever seems too much trouble even when they are run off their feet. It was very busy, a backlog from Christmas I suppose although they only closed for one or two extra days.

My weight has fallen a little more then went up a little bit yesterday.  I'm hoping it will plateau.  I've seen this quite often in cancer, maybe I'll be lucky!  Walking and balance are becoming an increasing problem.  I stumbled yesterday and was lucky not to hurt myself.  I now walk with two sticks but still feel unsteady, The leukaemia seems to be advancing very quickly.

Yesterday we've saw the GP and district nurse at home.  I have developed a bit of an infection - cough, sore throat etc - so am now on different treatment for the next week.

The district nurse has organised a bed downstairs and it arrived late yesterday afternoon together with other bits of equipment.  I think I will need the bed very soon.  The system has been incredibly quick at getting things done, a really impressive service.

My mind has accepted what is happening  but my heart is an altogether more mysterious organ and is taking its time.  Emotionally I'm 'ok' as in I'm coping but that's not the same as acceptance. A hug and a little cry with Karine every now and then through the day is a big help and brings a sense of relief and calm - precious moments.  In my darker moments I don't think I'll make the end of the month, at other times I don't worry about it, anything could happen and what does happen probably won't be what I expect or was worrying about!

I came across a saying quoted by a fellow sufferer on the Macmillan cancer site - "Worrying does not take away tomorrow's troubles, it takes away today's peace".

Fairport Convention - 'Unhalfbricking' - track 6

Relapse + 56 - "Precious Time" *

Karine, Charlotte and I saw the consultant again yesterday to go over treatment options. We all came to the same conclusion that palliative care is the only sensible course.  The GP is activating the local Macmillan service and social services and they will do needs assessments - can't be soon enough the way things are going.

My biggest problem is weight loss.  I'm losing weight hand over fist day by day and no one knows quite why.  I'm back in outpatients sometime in the next day or so but I'm not confident anything else can be done.

Karine is being incredible, we have hugs and tears every now and and they do us a power of good. My overwhelming feeling is of a terrible sadness, I so wanted us to grow old together, to see our children make their way through life and watch our grandchildren grow up. I just hope and pray that Karine will be able to do this for both of us.

Before you think there is no joy in our lives we all had  a wonderful time at Charlotte's on New Year's Eve......

Someone on Facebook commented that Eden looks as though she is disowning the lot of us! ......

and no, we weren't roaring drunk, just being silly and having lots of fun.


* Van Morrison - "Still on Top - The Greatest Hits" - disc 2, track 1

Relapse + 51 - " It's four in the morning. the end of December" *

Firstly an email has been sent to lots of friends and family so you may well have seen what follows.

Karine & I went to clinic yesterday morning.  The news is not good.  The chemotherapy in November hasn’t worked, in fact the leukaemia has advanced in spite of it.  This is something we had strongly suspected during the last two to three weeks so it wasn’t a total surprise.  The alternative treatments are immediate intensive inpatient chemotherapy  which could well kill me and may not work.  If it did work I would need another transplant to try and prevent another relapse with about a 25% chance of success.  However in July the government stopped funding second transplants. 

All in all this treatment is a high risk strategy with poor quality of life and little hope of success so I have opted for supportive palliative care.  My consultant has given me ‘six months’ but this is a pretty wild guess.  An infection could strike at any time and the advancing disease will cause problems at some point so it’s really six months plus or minus several months, more minus than plus I suspect.

Without any white cells I am extremely vulnerable to infections.  I am being kept going with a cocktail of antibiotics and regular blood transfusions so it’s frequent outpatient visits to manage this.

If you would like to visit you would be very welcome.   I suggest you do it sooner rather than later.  It is probably best to  call Karine’s mobile.  Alternatively call or text me.  I tend to have a siesta in the afternoon so would be grateful if you didn’t call the landline then.  If you are coughing or sneezing or think you may be becoming unwell please wait till you’re better.    Visitors in small numbers at a time energise me.  If you are coming from afar then please stay for a couple of nights, whatever is convenient. 

I remain in good spirits, mostly, so far - determined to make the most of the remaining time.  I try to live in the moment as best I can.  As we drove through the hospital yesterday the trees were stunningly beautiful  - covered in brilliant white frost in the bright morning sun.  I wished I had a camera with me!

Alexi, Lucy Eden Bethany Karine me Charlotte and Stewart just after Christmas

None of the above is confidential so please feel free to pass it on to whoever you like in whatever way you like.

Karine and I wish you all a very happy New Year,

With all our love

D & K

* Leonard Cohen - Songs of Love and Hate - opening line of "Famous Blue Raincoat" track 6

R+48 - "December Song" *

Been home ten days now, so far so good, no sign of any infection. This is largely down to great care from Karine and to me avoiding groups of other people. The house is awash with cleaning agents, though Karine sticks to the environmentally friendly ones as much as possible.  The main risk is everything we touch around the house, appliance handles, door and cupboard handles, taps, TV remote controls, telephones, hand rails etc. The more you think it about the more paranoid you get!!

Meanwhile I live on blood and platelet infusions and a cocktail of antimicrobial drugs.  There is no sign of the bone marrow recovering and the consultant thinks this should be happening by now. The upshpot of this is he is considering a repeat BM Biopsy probably next week but nothing is decided yet.

There are hospital visits for blood counts and transfusions on Wednesday 28th  and to see the consultant on Thursday. The crucial question is have I got any neutrophils back? If so this changes everything and I will be absolutely over the moon, thrilled to bits and heartily relieved because this means the bone marrow is waking up and it looks as though the chemotherapy is working, at least to some extent.  It will mean I could mix a little with other people.

No neutrophils suggests the opposite so there is no point in continuing with the chemotherapy for the next three to four months. The leukaemia would have a field day, well at least that's my understanding of the situation.  Hence a BM Biopsy to properly assess the situation. I just hope they can get a useable sample quickly, it's been a real struggle recently.  If it's bad news I don't know what happens next and until now deliberately haven't asked.

Christmas celebrations went ahead joyfully chez nous.  Karine decided on a no stress Christmas so no big meal as such but plenty of good food.  Charlotte and Stewart, Bethany and Eden joined us for the day.  We all sat down together for a slow meal in the conservatory (it was a lovely bright sunny day) and ate things like smoked salmon, foie gras, home made little savoury tartlets thanks to Karine and Charlotte, olives, delicious home cooked cold sliced gammon, little chipolatta sausages made by the local butcher etc etc.  All this washed down with champagne and a special prosecco which Charlotte and Stewart had bought at a Chatsworth food fair earlier in the year.  I don't really drink alcohol, the taste puts me off which is a pity but does mean I get to drive people home!

Today they are all back again and Lucy and Alexi have zoomed down from Newcastle to see Lucy's family yesterday and us today. Lucy is back on a twelve hour shift in A&E this evening so they will leave early. She's already done the night shifts in the run up to Christmas including Christmas Day night finishing at 8am on Boxing day morning, an exhausting schedule.  Alexi also worked over Christmas.  We also have one of my nephews and his partner popping in on their way up to the Peak District, we haven't seen them since August so it promises to be a great day.

We have also had friends come round during the Christmas break, mainly in ones and twos and the change of company is a real tonic for both of us.  If anyone would like to visit they would be most welcome.  Please call first unless you don't mind finding us out, as there are hospital visits two or three times a week.  Infection is a big danger so please stay  away if you are coughing or sneezing or think you might be going down with something. There is some flu and some norovirus about at the moment. If the weather is half decent you may get dragged off for a very short easy walk. The muscle loss whilst in hospital earlier in the month has been dramatic and it is proving hard slow work to regain the lost ground.

The next post will probably be later this week to report how the hospital visits went and what happens next.

A belated Merry Christmas from Karine and I to anyone still awake after reading this!

* George Michael - "December Song" - the title track off a 2011 EP

R+37 - "The Naked Ride Home" *

The above title isn't completely accurate!  It's a sunny day but this isn't California, Karine and I are no longer in the first flush of youth and it's December in England so we opted to keep our clothes on!

The rest of the title is perfectly correct, I'm going home this afternoon together with some extra tablets, I can't wait.  Karine and Charlotte are coming to pick me up in an hour or so.  Then it's back to the Day Case Unit in three days time on Tuesday to see if I need more platelets and again on Thursday to see the consultant to discuss the next round of treatment and check my blood counts before the Christmas weekend.

It feels fantastic to be going home especially on a bright sunny day such as this, things are looking up!


Jackson Browne - The Naked Ride Home, title track

R+36 - "The Boy in the Bubble" *

No temperature for nearly three days now so perhaps the infection has gone. Each episode seemed as though it would never end and made me feel that this was not a life worth living. Then the fever would start to subside, the horrible shaking would settle and the other symptoms such as no saliva would resolve themselves, life would start to take on some colour again and the future would make an appearance once more.

If everything goes well the IV antibiotics will stop later today. No bug has been found for all this palaver which means the treatment has been empirical.

I am sustained by regular transfusions of blood and platelets and will need some more in the next day or so. As for going home, perhaps by the end of the weekend if I'm lucky.

I still have no neutrophil white cells so am not sure when I can start the second round of chemotherapy. This is likely to make me worse again as it upsets the graft cells whilst hopefully pushing back the leukaemia, more fun and interesting times ahead!

Karine brings food in twice daily for which I'm extremely grateful. That and the regular visits from her and Charlotte do more for my quality of life than anything else, oh apart from paracetamol when I'm spiking a temperature!!!

Once home the risk of infection is the big danger as before. I think I will need to wear a mask when leaving the house like those tourists one sees, they can't all have neutropenia can they?  Karine is threatening to put me in a glass bubble.

Later today we meet professor emeritus John Fletcher - after whom the transplant ward is named - and finally present the cheque from the walk in Derbyshire in September, £1,670.  Lucy and Mike my sister and brother-in-law as chief instigators, organisers and leaders of the walk will be there too,

Paul Simon - Graceland, track 1

R+32 - "I'm so Tired" *

The neutropenia got me, or rather the bugs did, about nine days ago. I've been in hospital for the last eight days with septicaemia. The bug causing this hasn't been found and so I've had a variety of antibiotics. I still keep throwing up a high temperature from time to time complete with rigors (violent shaking and shivering), but none in the last 24 hours. I'm hoping I've turned the corner but it's far to soon to tell.

There have been a couple of nasty drug reactions causing a not so pretty rash all over. Fortunately it is not itchy or sore otherwise I'd be forever scratching.

Meanwhile the chemotherapy is delayed and I am kept going by platelet and blood transfusions.

Karine has had a cold so didn't visit till a couple of days ago but has been cooking meals for me, the hospital catering is outsourced and the food is diabolically awful.  Charlotte has been visiting regularly and bringing the food in.

As always, the nursing staff on the ward are wonderful. A couple of times my blood pressure has dropped very suddenly needing urgent attention and they have been very professional and calm in dealing with the situation.

On a completely different note and a much cheerier one, Alexi's wife Lucy has just passed her last lot of medical exams and in the shortest time possible - i.e. she took every postgraduate exam at the earliest opportunity over the past six and a half years and passed the lot first time  - a fantastic achievement. She has now got her Fellowship and is an FRCEM, Fellow of The Royal College of Emergency Medicine and can apply for a consultant post.

I'm very tired, haemoglobin is right down (71) so I'll stop for the moment and maybe write another blog in a couple of days depending on how things go.

*Beatles - White Album - disc one I think, can't remember the track number.

R+22 - "A Rush of Blood to the Head" *

More falling, this time all my blood counts, white cells have all but disappeared, haemoglobin has dropped to 8.8 which explains my increasing breathlessness with minor exertion.  Platelets too have taken a tumble. So two units of blood and one unit of platelets should sort out two of these problems - temporarily. For the white cells it is back to G-CSF (Granulocyte Colony Stimulating Factor) which my sister had prior to stem cell donation and which I had after chemotherapy and after the transplant to kick start neutrophil production.

So for the moment it is back to the wonderful neutropenic lifestyle, wah hey, avoid crowds (no shopping -yippee, no eating out - boo), avoid public transport, a neutropenic diet, no soft boiled egg or smoked salmon, no unpasteurised dairy products and a long list of other foods banned! Infection is the big danger, I'm to measure my temperature twice daily whilst my neutrophils have gone off galavanting.

The next cycle of chemotherapy starts on December 12th in theory but only if my bloods are 'OK.  Otherwise it is delayed till the neutrophils stop feeling quite so shy.

The cause of all this kerfuffle is mainly the Azacitadine.  In clinic yesterday the consultant said the pancytopenia (all blood counts down) was entirely to be expected, this will get worse before it gets better.  Whilst it is clobbering the leukaemia (hopefully) it is also hitting my  bone marrow. I'm the collateral damage.  However the chemotherapy has a rather nasty sidekick who is trying to put the boot in, namely my old nemesis Lou Kemia. So far it has taken over quite a lot of the marrow space and the Azacitidine is there to roll back this crimson tide.

On the good news front the steroids have now finished completely which means I can come off the osteoporosis prevention stuff as well - now down to ten tablets daily - a doddle compared with the 25-30 I was on last spring.

The biggest problem is the almost overwhelming fatigue which is much more profound then when I had a similar haemoglobin at first diagnosis.  The reason is my level of fitness which was quite good in the spring of last year and is now nowhere to be seen.  Two pints of blood and a foaming pint of platelets should make quite a difference.  Its back to hospital in three days to do a repeat blood test to see if this lot and the G-CSF are working, wish me luck!

* Coldplay album from 2002

R+16 - "Late November" *

Round one of the chemotherapy has finished without too many problems.  The anaemia is very slowly worsening making me a little more SOB on exertion. My platelets keep falling and needed topping up yesterday just to keep the level in double figures.

The bowel problem, GvHD, seems to have gone!  The chemotherapy is causing the opposite problem!  All being well the steroids will stop completely at the end of next week, perhaps then I will start to lose this puffy 'moon face' look though it will probably take some months to fade away.

To some extent the next three months will be just marking time, three more rounds of chemotherapy and trying to avoid infections.  My aim is to try and improve my fitness level in the meantime so that if I get into remission I will be in a reasonable physical state, not so easy when going upstairs make me short of breath and my leg muscles ache so 'fitness' is a relative term.

If I'm not in remission then I need to be in good shape to cope with whatever they want to throw at me next.

We've had several visitors in the last week or so and it is great to have a change of company for both Karine and I.  We try to make the best of each day, time has become a precious commodity.  Last night we had our granddaughter Eden staying with us, a real bundle of love, sunshine, happiness and enthusiasm.  We are very lucky to have her nearby.

* Pavlov's Dog - Pampered Menial - track 2

R+8 - "Only a Pawn in Their Game" *

Karine continues to run me to the hospital each day, my concentration isn't the best and half the main carpark is closed for refurbishment so finding a space is a nightmare.  I've had nine appointments/procedures this week.  The chemotherapy started at the beginning of the week and continues into the first two days of next week.  Apart from having a bruised abdomen (two deep subcutaneous injections everyday) I seem to be being spared too many side effects so far.

My platelets keep tumbling.  Today I have had a third unit of platelets just to maintain them at a minimum level.  I'm acquiring a few more bruises each day and generally have no idea how they happen.

Apart from feeling tired and getting short of breath from the anaemia I feel fairly well, just still rather shocked by the relapse and the thought that the transfusions are all that keep me going whilst we wait to see if the chemotherapy will work.

The powers that be are definitely conspiring against me.  When I relapsed my consultant mentioned four options, another transplant (banned by Jeremy Hunt in the summer - grrr!), inpatient chemotherapy (still an option), something called Donor Lymphocyte Infusion (more cells from my sister but this would significantly aggravate the GvHD) and finally Azacitidine which is what I'm having.  Unfortunately NICE has recently announced that it is considering banning this drug for patients with AML over the age of 65, it's too expensive for the effect it has -grr!.

Fortunately I'm only 64 - phew - so I should be able to continue the course.  By the time the course finishes I will be nearly 65.  I don't know what happens if it is found to be working.  The data sheet recommends a longer course in that instance.  The alternative is probably further inpatient therapy, which one of the consultants called 'hand grenade therapy' - sounds fun!

Anyway, there is now a respite from all this over the weekend, time to live a little.

* Bob Dylan - The Times They Are A-Changin'  - track 6

R+6 - "Just Passing Through" *

These blogs had previously dated from the day of the transplant know as "D Day" in the Haematology department.  This no longer seems quite so appropriate since I've relapsed hence R+7 - days that is.

We had very happy weekend celebrating Karine's birthday with a meal on Saturday in a hotel just south of Nottingham and afternoon tea with friends and neighbours on Sunday afternoon.

Eden showing us how to use a Selfie Stick!

Stewart & Charlotte

Eden

Birthday Tea at Home

Leonard Cohen - "Live Songs" - track 2

D+15 months - "Ego Relapsus Resurgo" *

Finally a result from the BM Biopsy but not the one we wanted.  The blood counts have all fallen some more than others and the Biopsy shows that the Leukaemia is back.  We had been told from the start that this was on the cards but 18 months after going into remission you begin to think it won't happen.

The plan is transfusions of various sorts to treat the low blood counts and outpatient chemotherapy for seven days each month for four months, the aim being to get back into remission then a repeat BM Biopsy & Aspirate in about March time.  Don't know what the success rate of this treatment is.

Karine & I only learnt this news an hour or two ago so we've neither of us taken it on board properly yet.  It did seem the obvious cause for the falling counts but it is one thing to suspect a relapse and another to have it confirmed.

Enough for now,

I think this is Latin for "When I fall I shall rise"

D+15 months - "Love and Hard Times" *

Tuesday saw another stab at getting some bone marrow out of my pelvis - actually, five or six stabs - I lost count!  This was done by a Dr rather than the specialist nurse.  After a couple of unsuccessful attempts at a BM Aspirate he had a go at a Biopsy and got a sample.

Then he had at least a couple more goes at an Aspirate and finally got a really good Aspirate sample, thank goodness, I was very very pleased.  The result is I am pretty sore and have a lot more holes in my backside than I was born with!

Whilst I was in the department they gave me a unit of platelets for good measure. Hopefully this will reduce my tendency to bruise at the drop of a hat, at least for a while.

If all goes well I should get the preliminary results from the aspirate at Thursday's clinic - 3rd November, fingers crossed. The full result will take another week or two as usual.

On Wednesday Graeme and Noelle took us to Clumber park in north Notts. The trees were fantastic, such beautiful colours and at times it was raining golden leaves. The sun shone through the branches dappling the leaves with a magical autumnal light (is there such a word as dappling?), an excellent distraction from everything else going on.

Thursday - time passes slowly when you are waiting and sleep is elusive. The morning dragged by at a snails pace. Eventually we got to clinic, my haemoglobin has fallen some more, 10.4g/dl.  The EPO hasn't had time to kick in yet, I've only been back on it for two weeks.  The platelets had risen thanks to Tuesday's transfusion.

Eventually Karine and I were ushered in to the consulting room - no result, nothing, zilch, not a drop!  The aspirate sample turned out to be blood only, no bone marrow cells. The naked eye appearance of the two is the same.  Everything now hangs on the Biopsy sample which 'should' be available this time next week.

Being in limbo is no fun but can't be helped.  I feel wrung out by all this.  I need a cure starting with a cup of tea, then a nap and then some distractions over the next few days!  All will be well till next Thursday but there is plenty of time to think about that later.

* Paul Simon - "So Beautiful or So What" - track 5

D+15 months - "News" *

In effect 'no news', the BM Biopsy last week consisted of bone and little else, no bone marrow so no result.  I'm not sure if this is a reprieve or merely a stay of execution.  The platelets and haemoglobin have both fallen a little further, the chimerism is the same.

Prof brought up the subject of a relapse again saying this was the thing he was concerned about. The result is a platelet transfusion and a repeat BM Aspirate and BM Biopsy next Tuesday.  If the Aspirate is successful their will be a preliminary result this time next week, if not a result in two weeks all being well assuming they find some bone marrow - more waiting - grrrr!

The steroids have been reduce yet again and the Prednisolone might be stopped in a week's time - a year after starting them.  That still leaves me taking the less toxic steroid, Budesonide.

Earlier this week we had two days in York with our granddaughter Eden and had a visit from Alexi & Lucy who came down from Newcastle for the evening.  We had a lovely night with them.

The previous evening we had supper with some old friends who had called in to see us a couple of times earlier in the year.  Eden kept us entertained all evening.

* Dire Straits - "Communique" track 2

D+14 months - "Let It Bleed" *

Part 1 - Tuesday 18th was Bone Marrow day....
.... and turned out to be a long day.  The platelets had fallen yet again, from 21 to 16 in the previous five days. They had two attempts at a Bone Marrow Aspirate in the morning but couldn't get anything out at all, what is called a 'dry tap'.

Over lunchtime, as planned, I was put on a nebuliser for Salbutamol and then an antibiotic, Pentamidine.

Meanwhile it was decided that I should have a BM Biopsy that same afternoon.  This involves a larger needle and the idea is to remove a core of bone marrow and bone.  A very experienced senior registrar who is a few months short of his first consultant post did the deed.  He was really excellent and didn't 'pin me to the wall' as my consultant had suggested might be the case!  It wasn't really very different to a BM Aspirate, brief pain only.  He tried an Aspirate first but this was another 'dry tap' so used the larger needle for a BMB which was successful thank goodness.  I now have four new holes in my backside and a little soreness to remind me what 's been going on!

A BM Biopsy is used to look at the structure of the bone marrow.  An Aspirate looks at the content.  So now it's a question of waiting for a result and keeping a close eye on the platelet level. The next clinic appointment is Thursday 20th and hopefully someone will have done the microscopy to see what is happening.  At the very least this will rule in or rule out various possibilities but may well not give a definitive answer.  The other tests on the BMB core sample will take a week or two.

Part 2 - Thursday 20th BM Transplant Clinic....
... but no results from the BMB.  The transfer of cells from the biopsy sample to a microscope slide didn't produce enough cells to interpret it.  There is a multidisciplinary meeting between the lab people and haematology next Wednesday so there will be a result when we go to clinic next Thursday.  The Cytogenetics will take a week or two after that.

Unfortunately the Haemoglobin has fallen back to 115.  The Chimerism in the blood which was 100% for a long time has fallen over the past month to 91%.  This is the mixture of donor cells and my original cells, the higher the percentage the better.  The platelets are unchanged at 16.  This all suggests that the bone marrow graft is struggling.  Whilst we are waiting for the results the steroids are being gradually reduced since they are suppressing the bone marrow graft and I'm to restart EPO injections to boost my haemoglobin.

The important question is why is the bone marrow struggling?  The answer could be anything from 'don't know' to infection to drugs to a full blown relapse.  Speculation is useless but pretty hard to avoid.

To this end Karine and I are away for a short break with our granddaughter Eden in the next few days so that will be a good distraction from the above.  She will keep us busy!  She is always full of enthusiasm and fun.  We took her round the National Tramway Museum yesterday and we all had a great time riding on trams and looking at all the old trams in the various exhibition halls.

* Rolling Stones "Let It Bleed" - track 5 off the album of the same name

D+14 months - "Ballad of a Thin Man" *

Well, my platelets have fallen yet again (21) so I'm booked for a Bone Marrow Aspirate in 4 days time (Tuesday18th) to see what's going on.  If that doesn't show anything then they may consider a Bone Marrow Biopsy (BMB) which involves taking a sample of pelvic bone as well as bone marrow. My consultant who is not prone to hyperbole said that they 'pin you to the wall' for a BMB - I've never been pinned to a wall before - doesn't sound much like fun!

The best news is that I've finally stopped Ciclosporin, the rather toxic immunosuppressant that I've been on since the middle of last year.  As long as my insides behave then I'll not need it again.  My weight remains stable but about 4kg (9lbs) below my pre-leukaemia weight - definitely 'a Thin Man'.

My folic acid level is a little low so as one tablet stops another one starts.  After a year on a pregnancy diet (is that a record?) I'm now on tablets used before conception and during pregnancy. I know my new immune is female but I didn't realise the full consequences of this fact.

Karine rightly suggested I postpone an allergy clinic appointment because of the low platelets.  I used to be allergic to shellfish but might have lost this allergy since the transplant and this appointment was to determine whether I am still allergic or not.  At the moment this not a high priority and the skin testing could cause bruising and bleeding.  I bruise more and more easily the longer the steroids continue and the lower the platelets fall.

I've got the go ahead for my next lot of infant immunisations and a flu jab.  One of the antibiotics I regularly take has been stopped because it occasionally causes low platelets.  In its place I have to have a monthly nebulised antibiotic in the Haematology Day Case Unit - trying to get away from the haematology department seems to be a lost cause at the moment.


Bob Dylan (Nobel Laureate) - "Highway 61 Revisited", track 5

D+14 months - "It's Alright Ma (I'm Only Bleeding)" *

As a child I was taught it was rude to count but it seems doctors are excused this restriction.  Full Blood Counts keep coming back with some funny numbers, platelets down to 26 (a few weeks ago they were over 50 and they should be over 150) and haemoglobin has fallen back a bit since stopping the EPO injections.  The result of the low platelets is multiple little bruises especially on the arms, rather unsightly but painless.

Fortunately the GvHD has been behaving itself in the last two weeks despite reducing the Ciclosporin from 30mg twice daily down to 20mg and now 10mg twice daily as of yesterday.  The plan is to stop it later this month all being well - this is exactly a year later than originally planned!  This time last year it was planned to stop Ciclosporin by the end of October, then GvHD reared its head and everything changed, especially my weight!

It's back to clinic next week to recheck the platelets.  So much for breaking free of the hospital and being seen less frequently, I keep being pulled back, just like the leader of a certain right wing party!  I'm not complaining though, it's the right decision and there haven't been any 'altercations' over this!

The walk in Derbyshire has now raised £1,600.26 with possibly a little bit more still to come.  As soon as the money comes through from JustGiving we will present the Nottingham Leukaemia Appeal with a cheque.

* Bob Dylan - "Bringing It All Back Home" 1965 - track 10

D+14 months - "Magical Mystery Tour" *

Back to clinic yesterday.  I'm no longer anaemic, the EPO  injections have sorted out my haemoglobin.

The platelet count is another story - they have dropped a little further so the EPO injections are suspended for the moment in case they are causing the problem.  Also I'm now on half dose junior aspirin - aspirin is an anti platelet drug - and I've been told to delay next week's third round of infant injections - they too have sometimes been associated with reduced platelets - all in all a mystery so it's back to clinic next week.

Meanwhile my insides are revolting again - GvHD of the colon.  The immunosuppressant treatment that was controlling this hasn't been changed in the last three weeks so another mystery - why are my new T lymphocytes attacking me?  As result of this my weight has dropped a little but seems stable again.

Despite all this I feel as well as I've felt for quite some time - thanks to the increased haemoglobin I presume unless the real reason is another mystery!

This last Tuesday Karine and our neighbour Janet ran a Macmillan coffee morning and also an afternoon session as part of Macmillan's 'World's Largest Coffee Morning.  They have raised about £480 so far.  The surplus cakes went to the school where Janet works and to the dept of Haematology!


Beatles - "Magical Mystery Tour" 1967 - track 1

D+13 months - "A Perfect Day" *

Actually, "a perfect weekend" would be a more accurate title!

The "Blood Sweat and Cures" walk in the Derbyshire Dales took place last weekend and was a great success. We were incredibly fortunate with the weather, two beautiful days, sunshine, no rain and a light breeze, wonderful. There were about 22 people walking on Saturday and 14 on Sunday. The overall distance was about 23 miles.  I managed about 5 miles a day which I feel very smug about! - got some aching calf muscles to prove it.

As well as local friends we had friends and family from London, Bath and Shrewsbury.  So far we have raised over £1,400 for the "Nottingham Leukaemia Appeal".  A big thank you to everyone who took part, to everyone who contributed to the NLA, to Nigel and Richard for driving support and to Mike, Lucy and Karine for organising it all.   The JustGiving site will stay open till about 29th September.

Karine has put some of the photographs on her Facebook page.  Here are a few 'before and after' group shots.

- Saturday:- Great Longstone to Birchover via Chatsworth

- Sunday:- Birchover to Great Longstone via Robin Hood's Stride and Lathkill Dale

Lou Read "Transformer" track 3 though I could equally have chosen 'A Walk on the Wild Side' from the same album