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

D+13 months - "Walk Of Life" *

Another Thursday, another clinic visit.  Mixed news, the haemoglobin has crept up to 126 thanks to the EPO injections.  130 is normal so 126 is OK.  The EPO has been reduced to once a week, they don't want my blood getting too thick because of the risk of a clot.

However my platelets which having been bobbing around at about 50 for a couple of months have fallen to 32 which explains why I bruise and bleed so easily. The normal range is 150-450.  No one seems to know why they've dropped though plenty of theories abound - GvHD, childhood immunisations, a viral infection, the immunosuppressants, EPO, inflammation etc etc - who knows!  So its back to clinic next week to recheck them.  The other treatments, ciclosporin and steroids, remain unchanged for the moment.  The GvHD is under control but only just!

On a cheerier note the weather looks set fair for the walk in the Derbyshire Dales this weekend, dry and not too warm although it is throwing it down as I write - Friday morning!  There are 24 people walking on Saturday and 17 on Sunday.  I am not able to do the whole walk, 11-12 miles each day is just too much, and so will dip in and out.  So far we've raised £1,140 for blood cancer research in Nottingham, £970 on the current page and £170 on the previously expired page. The JustGiving page will stay open until about 29th September.

                                                  Blood Sweat and Cures

A big thank you to everyone for your marvellous generosity.

* Dire Straits, "Brothers in Arms" track 3

D+13 months - "The View from the Afternoon" *

Karine took me to clinic this morning to see Prof Russell.  The fatigue is gradually lifting and my Achilles tendon continues to very very slowly improve.  At the last visit the EPO injection which stimulates the bone marrow to produce more red cells was doubled and my Hb is now gradually improving at last.  If the improvement carries on I'll cancel the cardiology referral as and when it comes through.

Meantime the plan is to reduce the Ciclosporin because reducing the steroids causes the GvHD to flare up.  The Ciclosporin is now down to 30mg twice daily.  At the present rate I could be off it altogether in a couple months time.  However there was a similar timetable for stopping it exactly a year ago and then GvHD kicked in so anything could happen and something probably will happen - it's back to trying to be a patient patient again!

We also visited the practice nurse this morning and I had a second lot of baby immunisations - four needles!  I had already given myself two EPO injections before setting off and when we got to hospital there were blood tests, another needle - all good fun!

During the past few weeks we have had a few days in London with Charlotte, Stewart and Eden and then a week in a bungalow in north Norfolk with Eden.  We were fortunate with the weather and spent the time going to the beach, a boat trip to see the seals at Blakeney point, a steam train ride, a visit to a circus and a farm, a busy week full of fun.  It is so good to get away for a short while.

The JustGiving page has expired all on its own so we've had to create a new one (with a similar name).  This means the link on previous blogs doesn't work.  So far we had raised £170 on the old page.  The new page has only just been opened so shows £0 at the moment but all the money from both pages will go to "Notts Leukaemia Research"  Here is the new link....

Blood, Sweat and Cures

* Arctic Monkeys - from their album "Whatever People Say I Am, That's What I'm Not" - track one

D+12 months - "Love Needs a Heart" *

Haematology-wise things are looking pretty good.  The GvHD is back under control, the steroid dose is coming down again - prednisolone 3mg currently - I'm in remission, haemoglobin should be rising with the EPO injections and apart from a load of residual side effects from last year's chemotherapy there are no real problems. The 'residual side effects' are just a bunch of unpleasant nuisances.

However the fatigue is gettting worse and I'm needing a rest most afternoons, something I haven't needed for many months.  Going upstairs makes me SOB.  The upshot is Karine took me along to the GP last week and the result is a referral back to cardiology.  When they fitted a pair of stents in February they noted a couple of other arteries with some narrowing so maybe one of these has narrowed some more or perhaps one of the stents is in trouble - ODTAA - 'one darn thing after another'!


*Jackson  Browne from his superlative 1977 album "Running on Empty" - track 7

D+12 months - "Needles and Pins" *

A better week but I feel like a pin cushion!  The GvHD has settled down with the steroids so I'm now dropping the dose 1mg per week over the next few weeks - all being well!

The haemoglobin has risen a little, presumably because of the EPO injections.

The Bone Marrow aspirate of three weeks ago has come back negative meaning I'm still in remission.

The 'pin cushion' is because on Thursday Karine and I went to clinic and I had the usual blood tests. Thursday is also EPO injection day (twice weekly).  Then in the afternoon we went to the GP surgery for my first lot of infant injections, four injections, two in each upper arm.  Woke in the night with sore shoulders, not surprising really.

Karine and I have had a few days in Bath visiting our friends Tom and Jane.  I'm still very fatigued much of the time so Karine did most of the driving.  The weather was rather damp but that didn't dampen our spirits.  Tom and I managed a short walk by the Kennet and Avon canal in Bath.  Well, Tom just strolled along I was the one 'managing'.  Karine met up with an old friend from Nottingham who had moved to Bath some years ago and she and Jane indulged in some retail therapy.

The following day we visited an ancient priory in Bristol to look at a marble bust done by my great great great grandfather.  We have been gradually tracking down his work over the past five years or so. It is is scattered all over the country, there is still a lot more to see.

Finally the walk in mid-September is gradually coming to fruition.  We've called it a 'sponsored' walk on the leaflet but the idea is that anyone who would like to support the haematology research work going on in Nottingham can contribute via the Just Giving page.  It doesn't matter whether you can go on the walk or not.   Also, you can give anonymously if you wish.   The link is.......

Blood Sweat and Cures 

* The Searchers - "Needles and Pins" - 1964 single

D+12 months - "Up, down, turn around" *

1. Up

A mixed week, the GvHD has come back.  It seems that dropping the Prednisolone to 1mg was a step too far.  The hospital upped the dose to 2mg three days ago with little effect.  As a result Karine & I went to an extra clinic appointment this morning and the Prednisolone has been bumped up to 5mg with a review in one week's time.  If this burst of steroids works I'm hoping they will reduce the dose back down to 2mg quite quickly - this is very similar to the way we treat people with an asthma attack except the steroid dose is higher.

2. Down

At the same time I've been getting increasingly tired and was starting to get more short of breath on exertion (SOBOE).  My haemoglobin has been falling since stopping the EPO injections a few months ago and is now about 10.5g/dl so it's back to the EPO twice a week to stimulate the bone marrow graft.

3. Turn Around

No news on the microscopy of the Bone Marrow aspirate from last week and anyway the fancy 'FISH' test takes two to three weeks to turn around.  To be fair, with the GvHD and anaemia problems I forgot to ask.  In any case if there was any sign of a relapse the department would have been on the phone immediately.

Karine has just come back from a week in Provence staying with her sister and brother-in-law having managed to fit in some swimming, an excellent evening of entertainment in the village arena by 'gardians' from the Carmargue (horse riding and rounding up bulls), a visit to the weekly village market and some much needed French retail therapy in Salon de Provence.

Whilst K was a way I was very well looked after - supper with Charlotte and Stewart one evening, a barbecue with Steve & Janet next door another evening and a visit to Sherwood Forest (yes there is some of it left!) for some very very gentle cycling followed by a picnic.  Another day I was invited  to share breakfast in the garden with some other neighbours, Lyn & Tim.

My school friend Rob came to stay at the beginning of this week and we had a lovely time talking about everything under the sun.  He drove me to the audiology clinic two days ago which meant not having to be concerned about parking in town.  We go back 51 years which is a somewhat sobering thought.  (There is an appropriate Jimi Hendrix song title here, '51st Anniversary' - the B side to 'Purple Haze').

Just before the weekend our former neighbours, Jane & Tom called in for a couple of hours and we caught up with family news.  All being well (actually that should really read - 'me being well enough') we are going to stay with them for a couple of days in early August.


* New Order - A line from the 1980 single, "Temptation"

D+366 - "Birthday" *

Had a bone marrow aspirate two days ago on Thursday morning.  Unfortunately the samples kept clotting in the cannula so eventually one of the doctors was called in to sort me out.  All in all they needed three separate attempts to get enough bone marrow, three separate stabs through the pelvic bone - ouch ouch ouch!  As usual the result will be available in a week or two - most probably at the next clinic visit in early Aug.

The samples clotted very quickly last time as well.  At that time the doctors told me there was no significance to this or any cause for concern.  Nevertheless the registrar who finally managed to get some samples has ordered some extra blood tests to see if anything else is going on - unrelated to AML if I've understood correctly - hurray!

As far as I know this eighth bone marrow aspirate is the last routine one - hurray!

The reduction in prednisolone continues without incident - I've been on 1mg for a week and come off it altogether in a week's time - hurray!

And now.....

I am one!

That is to say Saturday 23rd July, is the first anniversary of my transplant, a sort of rebirth - hurray!

It's been a rough year for both Karine & me but we seem to have come through the challenges intact if somewhat 'scathed' (is that the opposite of unscathed?!).  This perhaps should be a time for reflection and deep insights into the human condition but the main feeling I have is one of gratitude for all the help and support we have had from the hospital, family, friends, and fellow sufferers and I am just so grateful to be here at all.  In so many ways I have been very fortunate.

As for the future we hope to catch up with family and friends by doing some travelling and visiting in the coming months unless events overtake us again.

As mentioned in the previous blog, last Sunday we did the Bloodwise walk at Carsington.  It was a beautiful day, sunshine and a light breeze.  Margaret & Neil, Alexi's in-laws/Lucy's parents and Lucy & Mike, my sister & brother-in-law came along as well.

I managed about 30% of the circuit and then turned back - a distance of about five miles - Karine and the others did the whole eight mile circuit.  This was followed up with a picnic by the lake provided by Margaret and a visit to Scarthin Books in Cromford on the way home - an absolutely wonderful secondhand bookshop, worth a long detour if you like second hand books and are anywhere near south Derbyshire.

* Beatles - White Album - first track disc 2

D+357 - "Down to Zero" *

Karine & I went to clinic today.  The main steroid tablet is now down to 1mg for two weeks then it will stop altogether, review in clinic a week later - fantastic!  Just hope that the GvHD of the bowel remains quiescent 

After that the plan is to start reducing the ciclosporin - this is the drug which I suspect (and hope) is causing peripheral neuropathy and a multitude of other minor annoying side effects.

This weekend Karine & I are hoping to walk round Carsington Water for "Bloodwise Midlands" with Alexi's in-laws, Neil and Margaret.  Bloodwise is a large blood cancer research charity which has been around since about 1960.  Alexi & Lucy raised nearly £3,000 for them last year by doing the Great North Run.  My Achilles tendon is playing up a bit more so whether I'll complete the eight miles is questionable.

Meanwhile the government seems to be up to various tricks, quietly announcing bad news for the NHS and for patients when everyone is focused on Brexit and the changes going on in both main parties.  "A good day to bury bad news."

Karine pointed out to me that on 9th July Lord David Prior, Minister for NHS Productivity, (though that might change today!) announced in the House of Lords the government's intention to consider reviewing the funding of the NHS.  In other words they are considering making sick people pay for their care at the point of delivery rather than through general taxation.  I've always thought of NHS financing as a giant insurance scheme in disguise.  In other words we all pay into it through general taxation and if you fall ill then it pays for your treatment (mostly).  The advantage of this system is that everyone has access to healthcare, it is very cheap to administer and the burden of cost falls on those most able to pay, (assuming the very wealthy aren't hiding their money overseas).

The other bit of bad news this week is that NHS England has announced that patients will no longer be automatically entitled to a second Stem Cell Transplant if clinically indicated. A third of patients having a second transplant are still alive five years later.  It is generally accepted that if you are in remission at five years then you are probably cured.

This policy will be particularly hard on patients who would normally have a Autograft which is a transplant using their own Stem cells and then if they relapse have an Allograft (i.e. from a matched donor).  It is much tougher to recover from an Allograft and 10% of patients having an Allograft die from the procedure.  So do you go straight for an Allograft or risk a relapse with an Autograft?  This will be especially difficult for parents of young children.

It is difficult to see how this will save much money.  A patient denied a second transplant will need chemotherapy, not a cheap option either.  I haven't seen the full details of how this proposal will work so may return to the subject when more fully informed.   If you want to read more about this the link below will take you to the Anthony Nolan site

Second Stem Cell Transplants

* Joan Armatrading - "Love & Affection: Classics 1975-1983" disc 1 track  4

D+352 - "So I'll continue to continue to pretend that my life will never end" *

Just a quick update, no clinic this week so no change in treatment.  The reduction in Prednisolone twelve days ago has been uneventful thank goodness so hopefully come next Thursday's clinic it'll be dropped down to 1mg daily.

My Achilles tendon feels much less vulnerable and is gradually settling.  Karine & I have done a couple of very short walks this week without incident and I have started using the exercise bike again albeit only in short bursts - my leg muscles feel incredibly weak after 4-5 weeks of enforced rest. Karine's back has more or less settled down though her neck still gives her trouble so we both feel much less constrained by our various maladies.

With this new born optimism we have planned brief trips to Newcastle, Portsmouth, London and Norfolk in the coming weeks.  If all goes well we will try and get away in the autumn as well. However we had similar ideas last autumn and then everything went pear shaped, GvHD, IHD, septicaemia etc etc.

This weekend we are celebrating the day we met 40 years ago on Sunday.  We've planned a barbecue with some friends!  Currently the sky is very dark with low cloud and the rain is coming down in torrents but this being England it could change in the next five minutes - or not!

I seem to be living my life all over again or perhaps I'm just regressing!  I am gradually coming off the 'pregnancy diet' which I've been on for the past year or so.  Now that the pregnancy is coming to an end it turns out that the new baby is me!  This week a letter arrived from the hospital asking me to see the GP and start a programme of vaccinations, the full set  of infant jabs from Dip/Tet/Polio/Whooping Cough through Hib, Pneumococcus and Meningococcus to MMR.  Having gone from pregnancy to babyhood, the next stop will be a preschool booster and then Key Stage one and Sats!

Paul Simon - a line from "The Flowers Never Bend with the Rainfall" track 11 on the 1965 album "The Paul Simon Songbook".

D+345 - "Blood Sweat and Cures" *

Karine & I together with Lucy & Mike have now got the September Walk in Derbyshire more or less organised.  We are calling it "Blood Sweat and Cures" a name suggested by Stewart, our son-in-law.  The details are on my Facebook page but to recap this is a two day walk on the weekend of September 17th & 18th.  To borrow a phrase from Round Table, the aim of the weekend is "fun, fellowship and fundraising".

Below is the poster giving the details.  The link to the JustGiving page on the poster doesn't work because it is an image file but the live link here works fine!  If you would like to join us please let us know.

Blood Sweat and Cures JustGiving page

* Blood Sweat and Tears is an American Jazz Rock Band formed in the mid late sixties - "Spinning Wheel" with the opening line 'What goes up must come down' is perhaps their most famous song.

I thought Blood Sweat and Tears was a quote from Winston Churchill.  When I checked what he actually said it turns out Byron had used a similar phrase and I'd got the quote from Churchill wrong!

Byron - "Year after year they voted cent per cent
Blood sweat and tear-wrung"

Churchill - "I have nothing to offer you but blood toil tears and sweat" May 1940 in parliament.  Trust Churchill to change the order thereby making people do a double take and listen. Also he used the word 'but' rather than 'except' which is what I thought he had said.  Churchill wrote his own speeches and part of his genius was to use short words wherever possible.

D+341 - "Go Down Easy" *

A long gap since the last blog, mainly because things have been going well and there is not a lot to report.  Karine & I went to clinic last Thursday and the steroids have been reduced yet again - now down to Prednisolone 2mg daily as of today.  The other steroids and the ciclosporin remain the same.

They don't want to see me in clinic for three weeks, the longest gap between appointments so far. Last summer and early autumn it was twice a week

The plan is to come off the last 2mg of Prednisolone much more slowly than when they tried previously, hence the title of this blog -  'Go Down Easy".  If that is successful I'll be off prednisolone in a couple of months or so.  Hopefully I will then start to lose the puffy 'moon' face that steroids cause and my skin will start to be less fragile.  The other steroid, Budesonide, isn't supposed to be absorbed by the body so shouldn't be causing the side effects associated with Prednisolone - I wonder if my body knows it's not supposed to absorb all this stuff I'm swallowing!

Karine's back and shoulder are improving at last and my Achilles tendon is slowly healing, it is just so slow and so frustrating.

We are getting on with the planning of the walk in the Derbyshire Dales on the 17th & 18th of September.  We want a title for the walk if possible.  So far all we've come up with is "The Bloody Walk" because it will be in aid of a local blood cancer research charity - we need something better - suggestions please!


* John Martin - "Solid Air" - track "

D+323 - "Temporary Like Achilles" *

Another fortnightly clinic appointment for Karine and me.  It is a very friendly clinic and as usual we bumped into a couple of fellow sufferers so a good opportunity to catch up and to share experiences.  It's a clinic exclusively for Stem Cell transplant patients so the faces of the regulars are quite familiar.  The department does over 130 transplants a year - perhaps more now, I'm not sure - so there must be a lot of patients who don't attend as regularly as we do, hopefully that will be us in a little while.  As well as seeing the consultant the transplant coordinator nurse is always around and is available for help and advice - nothing is too much trouble for her.  We also see the dietician quite often but as my weight slowly increases this is becoming less frequent.  It is rare to be kept waiting very long.  The whole trip to the hospital usually takes about an hour and quarter from leaving home to arriving home again.  All in all an excellent service.

From the AML point of view everything has been going very well in recent weeks, the GvHD seems to be under control and the awful fatigue that was occurring for a day or so most weeks has disappeared.  The blood counts having fallen a little in the last month, but I'm not aware of this.  Whether this is a trend or just part of the normal variation that occurs in any biological system is too soon to say.

One of the steroids, prednisolone, has been reduced to 3mg which is a really low dose.  I'm still on different steroid, the steroid foam treatment and ciclosporin, but am slowly heading in the right direction.  The weekly tablet load is now just below 150 - much better than the 250+ of a few months ago! - and there is the prospect of this number continuing to gradually fall in the coming months.  I've been here before - last September I was within a few weeks of coming off ciclosporin and not a steroid in sight and then GvHD happened.

Meanwhile I hobble about the place, the Achilles tendon isn't really improving very much yet. Karine and I had a wonderful weekend on the Yorkshire Cumbria border with a group of friends. The weather was perfect - warm and sunny.  Everyone went for walks and visits and I enjoyed the garden and the view!  It was a great boost to be away for a few days.

Next week we are going to visit my uncle and aunt halfway down the M1 - just for a day - we haven't seen them for two years - two outings in two weeks - wow!


*Bob Dylan - "Blonde on Blonde" - track 10

D+317 - "Sitting in the Morning Sun" *

A week without a clinic appointment feels like a week of liberation.  Another good week with only a couple of minor glitches.  Oral thrush necessitated a call to our wonderful trial nurse who oversees the Figaro trial I am on.  A quick trip to the hospital to collect some medicine and I'm on the mend!

More irritating, my left Achilles' tendon decided to start playing up two evenings ago.  I had discovered that with considerable effort I could run upstairs so had started doing this a couple of days beforehand.  Unfortunately one of the many side effects of steroids is a weakening of the tendons and it seems the left one objected to the stairs.  It is only a minor strain but curtails my walking - grrr!

This is all rather aggravating, Karine and I are away in north West Yorkshire for the weekend with a group of friends celebrating two sixtieth birthdays - not ours I'm afraid, they are long past - our first nights away from Nottingham in fourteen months - another milestone on the path of recovery.  The weather is lovely and there is Hawthorne blossom and cow parsley in flower everywhere - the countryside is 'dressed for a wedding' as my sister says.  The aggravation is that I can't join in the walks but just to have the freedom to be away from home is brilliant.  K and I have both felt very trapped by the need to stay at home.

We are continuing with the planning of the walk in mid September.  Hopefully resting this silly ankle over the weekend will allow me to get properly mobile again next week so that we can recce the next section.

Meanwhile, 'I am sitting in the morning sun' reading Clive James' new book, all about facing death from cancer, (some sort of leukaemia I think). It should be rather morbid but so far it isn't at all.  He comes up with some excellent images and interesting insights which seem all too relevant.  No doubt I am seeing it differently because of the events of the past year,  I find it difficult to imagine how it would have struck me in my pre-leukaemia days so am just enjoying the moment.


Otis Redding - Opening line of "Dock of the Bay"

D+309 - "Keep on Truckin' " *

Another Thursday gone by and Karine and I made another visit to Haematology Clinic.  I've had a really good week since the glitch ten days ago, weight and energy levels back to how they were. Clinic resulted in several positive changes.  Some of my preventative antimicrobial prophylaxis has been reduced.  I'm now only taking two antiviral tablets per day as opposed to eight.

More importantly we are going to try reducing the prednisolone (steroid) again.  The steroids are causing increasing side effects especially thinning of the skin below the knees.  Every time I brush against something or knock myself I get a bruise or a graze so am really pleased to be trying to reduce it.  I went to the optician the other day and have very early signs of cataracts which may just be age related but are a well known steroid side effect as well.  Prednisolone is one of three steroids I'm taking but it is the one causing the majority of the problems.

So, a lower dose of Pred and no clinic appointment for a fortnight - brilliant!  It feels like a gradual release from the hospital.  The hospital has done an incredible job of caring over the past thirteen months. It's hard to think how it could have been better - oh, apart from the hospital food (provided by a private company - does the fact that it is outsourced make a difference? - hospital food was never great when I was a junior doctor thirty-five years ago but it seems worse than ever - perhaps I'm just more fussy).

Anyway, reducing the frequency of hospital visits brings a strong sense of relief, a feeling of independence, a feeling of freedom from the hospital and from leukaemia, a return to (normal) life. Life is no longer measured out in hospital appointments in quite the way it has been since the transplant last July.  Nevertheless follow up is for life and some of the medication is lifelong too, a small price to pay for having a life.

Another step along the road to normality is permission to socialise more (such as going to the cinema, using public transport etc) and a relaxation of many of the dietary restrictions, so soft boiled eggs and some soft cheeses are back on the menu.   All in all a very positive visit - no more 'glitches please!'

A reminder:- the walk in September on the 17th & 18th is going ahead.  Karine & I with Lucy & Mike are going to have great fun doing a recce of the whole route over the next couple of months.


*Donovan - from the album "What's been Did and What's Been Hid" - track 6

D+300 - "Hand Me Down My Old Walking Stick" *

Goodness, three hundred days already - "Who Knows Where The Time Goes?" **

The last three weeks have been great, feeling really well and enjoying life more than at anytime in the past twelve months - until three days ago!  I'm still nowhere near back to my pre-leukaemia state but can start to believe that whatever 'new normal' I eventually reach it will be ok, more than merely 'good enough'.

Then a reminder, as if I needed one, that the country road leading to recovery winds around and around and is prone to flooding and subsidence!  My insides decided it was time for a flare up, slight temperature, headache etc etc, not a lot of fun.

Three days later and it has largely settled, Karine and I are sitting in haematology clinic and the verdict is pretty good.  Platelets are slowly rising, haemoglobin is normal, ECP is to be held in reserve for the moment - phew!  I am to give the steroid foam treatment a further six weeks trial to see if it will work, unless the septicaemia keeps recurring.

Karine's neck and shoulder is still playing up and this doesn't help her cope with the stress of me playing ducks and drakes in such an unpredictable fashion.

Last week we had a wonderful walk with Lucy and Mike and were treated to lunch as well.  It was a beautiful sunny day and the northern end of the Derbyshire Dales looks fresh and new with the pale green of the trees that have just come into leaf and the vivid colours of the blossom everywhere - spring and autumn are both such wonderful times of year.

Dates:  we decided to do the walk (see previous blog entry) over the weekend of the 17th and 18th of September.  We'll sort out details about start times, transport back to Great Longstone and food etc shortly.  We'll cover about 10 miles each day.  There are no big hills although being Derbyshire there is some up and down.  With my current level of fitness I should imagine we'll be walking pretty slowly and how much of it I'll complete is anybody's guess - to paraphrase Harold Wilson, four months is a long time in Leukaemia.  The idea is for everyone to do as much or as little of the walk as they wish.

At this stage please just note the dates if you're interested in joining us.  Providing the weather doesn't let us down it should be lots of fun and a glorious weekend.


* "Hand Me Down My Old Walking Stick" - Big Joe Williams - Delta Blues guitarist who played a nine string guitar and who is perhaps most famous for "Baby Please Don't Go" which has been recorded by many other musicians over the years.

**Fairport Convention - "Unhalfbricking" - track 6

D+293 - "Good times, bad times, you know I've had my share* "

Perhaps the title of this piece should be "let the good times roll" - the last 10-14 days have been the best spell I've had since the transplant last July - the anaemia has definitely gone - the erythropoietin injections have worked a treat, I can definitely recommend them!  The recurrent septicaemia is in abeyance presumably because of the change of prophylactic antibiotics and my weight has been creeping up.

The new foam treatment is easy to administer and is not causing any problems.  Compared to ECP it's  a doddle.  It is hard to know if it is helping since I was already feeling quite a lot better before starting.  It certainly isn't hindering my progress.

Karine and I had a lovely time last week.  It was our 35th wedding anniversary and we managed to celebrate it properly with a meal in a bar/brasserie in Gunthorpe just outside Nottingham.  This was rather different to last year when we 'celebrated' in a tiny dark isolation room in hospital - dark because of the scaffolding and plastic covering outside the window.

Unfortunately later in the week I had a birthday - just what I needed! - something to remind me that I'm getting older!  The Beatles even wrote a song about this particular birthday just to rub the point in!  We had a barbecue at home with friends and neighbours and the sun shone on us.  During the afternoon we played petanque on the lawn and Karine managed to step backwards and end up sitting in Eden's paddling pool - which was funny at the time but the next day her neck and shoulder started playing up.

We have managed several walks recently most notably a walk around the village of Epperstone east of Nottingham.

At the beginning of this week we were taken by some good friends to Lea gardens in south Derbyshire.  The garden is huge and is full of Azaleas and Rhododendrons which have just started to come into full bloom.  We then walked down the hillside through some lovely bluebell woods into the Derwent valley and finished off having a pub lunch - perfect.

Today we are off up to Derbyshire to meet my sister (and donor!) and brother-in-law, Mike, to do a walk from a little village called Sheldon back to Great Longstone.  This is part of a circular twenty mile walk which starts at Longstone and heads down through Chatsworth to Rowsley and Birchover and then back north again past Robin Hood's Stride and to the west of Bakewell to Sheldon and Longstone.  Lucy and Mike are proposing that we do this as a two day walk over a weekend in mid-September which would allow other people to dip in and out as they wished.  More details of that anon.

* Led Zeppelin - The opening line of the first track on their first album

D+285 - "The Reluctant Fundamentalist* "

Another change of plan! - Had a telephone call today from haematology.  They've had a confab and decided that the sigmoidoscopy showed a better than expected result so the ECP is off the agenda - at least for the moment.  Great news as it means no central line and no having to hide from the sun for three days a week.

However, there is a catch!  They want me to have a steroid foam treatment up the fundament every evening (for a month to begin with), self administered at home of course - nice!  I think that's enough details of what that treatment entails.


* The Reluctant Fundamentalist - a novel by Mohsin Hamid

D+284 - "Home again, home again, jiggety jog"

Help, I'm being attacked by my sister!!

To be more precise, I'm being attacked by her T lymphocytes - (they are produced in the bone marrow and then processed in a little gland called the thymus, hence "T cells").

Karine collected me from the ward on Tuesday 26th after 5 days as an inpatient.  In clinic on Thursday it was decided I should have a baseline sigmoidoscopy prior to starting ECP in a week or two.  This was arranged extraordinarily quickly and took place the following day - a wonderful experience - please leave your dignity at the door and collect what is left of it on the way out!  This time the GvHD was described as mild and mainly in the lower end of the bowel so better than six months ago when it was much more florid.

Karine is finding it tough with the uncertainty of it all, having me in and out of hospital, being unable to go anywhere, the absence of warmth and sunshine and finding herself alone at home.  We are hoping to have a week's break in Norfolk in the school summer holidays with our granddaughter Eden.  Not exactly an exotic holiday but the change of scene and some sea air will do us good.

Next week it is two visits to haematology for routine follow up and also to see if I need platelets before a visit to X-ray for insertion of a central line (into the jugular vein)!  After that I'm all set to start ECP - the photopheresis treatment to try and sort out my T cell problem and the GvHD it causes.

Two of the people attending the weekly rehab sessions have had ECP and found it very helpful although not completely curative so I'm hopeful that it will be worth the trouble.


* Nursery Rhyme - First recorded in the sixteenth century

D+275 - "Once more unto the breach, dear friends, once more* "

Started feeling rough earlier in the week so ended up in Haematology Day Case Unit in the middle of the week having blood tests.  The upshot of this was back to hospital with another dose of septicaemia, the third episode in about six or seven weeks.  The antibiotics clear it temporarily but don't stop it coming back.  This time I'm on one of the haematology wards thank goodness so the nurses all understand what is going on, standards of hygiene are very very high (this is the stem cell transplant ward) and I have my own room with an en suite shower room, so some peace and quiet at night.

Every time Karine and I plan anything it seems that events overtake us.  My sister had offered us the use of her cottage in Ashford-in-the-Water and we had thought of having two nights there early next week - ho hum, dream on! "We are such stuff as dreams are made on"  as someone once said!  (WS - The Tempest) - well it is 400 years since his death and of course his birthday as well!

Meanwhile back in the real world the plan now is to try a light therapy called ECP, Extra Corporeal Photophoresis.  The idea is to take some blood, about a pint, spin off the white cells and treat them with a drug which is then activated by UV light and given back to me.  The drug will then kill off some of the cells that are attacking my insides and reprogramme my bone marrow not to go on producing these cells in the future.  That's the theory anyway.  This will be twice a week for eight weeks initially. There isn't a great deal of published research on ECP for GvHD of the gut but it appears to have about a 50% chance of working.

The day I came in here I had another bone marrow aspirate.  As usual the initial result will be back in about a week and the detailed results in about three weeks - fingers crossed!


* Shakespeare - Henry V - Act III

D+273 - "Give Me Strength* "

Home again a week last Thursday the 7th after 10 days in the City Hospital - hooray!

My Hb has risen to 13 and stayed there for at least a week, this is a rise of about 30% in the last 7 weeks or so - thanks to the Erythropoetin ('Epo' to various athletes in years gone by)!  The problem is that the platelets have dropped to below 50 and I keep getting small bruises appearing.  We saw Prof in clinic two days ago and the Epo has been stopped because sometimes as the Hb rises the platelets fall - a sort of seesaw relationship.  I'm not too sure why this should be but it means a return visit to clinic next week to check that the platelets haven't fallen any further.  So much for going onto two weekly visits!

My weight has crept back up to the pre-septicaemia levels of early March - about 4-5kg below my pre-leukaemia weight.  Last weekend it was brought home rather forcibly that this represents 4-5kg of not just any old tissue or whatever but loss of muscle.  Karine and I were in a local park with Charlotte and Stewart and their two girls, Bethany and Eden.

There is an outdoor gym and Stew jumped up on to a high bar and did a few pull ups.  I'm a little taller than him and thought I could do the same, some hope!  I could nearly reach the bar whilst standing on the ground but couldn't even jump the couple of inches needed to reach it.  I hung from a slightly lower bar next door but couldn't begin to do any pull ups at all.  It's going to take a lot more work and time to get back to anything like the pre-leukaemia level of rather modest fitness! They tell you it will take about two years to recover from the chemotherapy and the transplant - sadly it seems they were right.  :-(   So, it's back to the exercise bike, upper body exercises and weekly visits to the hospital gym - walking on the level just isn't enough.

* Eric Clapton - "461 Ocean Boulevard" - track 2

D+257 - "the days are long, the years are short* "

It's been decided that I should have ten days of IV antibiotics so I'm in hospital till Thursday - two days time.  I'm being allowed out during the day but have to be here for the three times a day antibiotics, for the phlebotomist and for the Drs.  There is lots of hanging around and much boredom.

I spend my time reading, listening to Radio 4, sleeping, chatting with other patients (I'm the only non-urology patient on the ward as far as I know) and talking on the phone.  Karine organised internet access which has been a lifesaver.  Haematology patients have access because we all tend to have extended stays in hospital and quite long periods of isolation.  This is funded by a haematology voluntary support group and I am very grateful to them.

It was Charlotte's birthday yesterday and Alexi and Lucy came down from Newcastle at the weekend partly for a celebration that Lucy's family were having and partly to see us.  Karine and I had a great time on Sunday playing in the garden with Bethany and Eden, Charlotte and Stewart and Alexi & Lucy all afternoon - a precious time together.


* Saying amongst junior doctors quoted by the late Dr Paul Kalanithi in his book "When Breath Becomes Air"

D+253 - "we get better but we never get well* "

Still in hospital, feeling better but tired from lack of sleep. I'm on a urology ward - for the moment - the noise level is best described as 'variable'.  The anaerobic tics are doing their work (that should have ready 'antibiotics' but a combination of my erratic typing and the autocorrect came up with something much better and much more appropriate, E Coli is a type of anaerobic bug!).

Eight months post transplant and I had hoped that by now I would be beginning to move on from leukaemia and transplants and looking back at some of the blogs from last summer things are not the same as they were then, thank goodness.  However I hadn't anticipated how much of a problem GvHD would be or how much medication I would still need let alone these episodes of septicaemia.  At the moment there is no end in sight to the GvHD or to the medication I still need to take - currently down to about 160 tablets a week.

Infection and relapse are the two big threats.  I've recently read of someone whose AML relapsed after five years so the proverbial 'woods' go on for quite some way yet - I'm not sure if this person had had a transplant or not - transplants reduce the risk of relapse significantly.  The sunlit uplands on the other side of the woods are some way off yet.

Karine has been bringing me food whilst I've been in here, an absolute godsend, and it looks like I will be in for another three to six days depending on how long microbiology recommend I should remain on IV 'anaerobic tics'   ;-)

*Paul Simon - Hearts and Bones - a line from "Allergies", the opening track.  A much underrated Paul Simon album from 1983 - some lovely songs, beautifully arranged and sung especially the tribute to John Lennon and 'Train in the Distance'