Friday 18 November 2016

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

No comments: