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