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