It is now nine months since I was diagnosed with AML and during this time my greatest support has come from Karine so this is by way of a rather incomplete inadequate and somewhat incoherent thank you.
In the darkest moments of late April and throughout May of last year when we didn't know whether the treatment would get me into remission we managed to celebrate our wedding anniversary and my birthday together in a small isolation room on the ward. She would then return to an empty house.
We were both carrying a burden, related but different.
When food was a penance because it all tasted horrible she kept on providing endless different variations of our favourite dishes, bringing them into hospital piping hot everyday. When I was having spikes and rigors because of the lack of immunity she was there providing comfort. When we go to outpatients she is my second ears and eyes, asking questions, collecting scripts, liaising with the transplant nurse, booking the next appointment, collecting me from the door when the weather is bad.
At home she recognises when I'm getting over tired (which at the moment is quite a lot of the time), she organises the shopping and the cooking, the maintenance of the house and every other chore that crops up. More importantly she organises the infection control. Assuming the Leukaemia doesn't relapse, infection is the biggest danger I face in the first year or so especially whilst still taking steroids and ciclosporin. My immune system remains rather crock and these drugs suppress it even further.
Most important of all is the psychological support. When I wonder how all this will end, when the fatigue and the multiple symptoms get me down, she is there to share the burden. Even just doing simple normal things together like going into a shop together are immensely helpful just because they are so normal.
We are both going to do a mindfulness course at the Maggie's Centre at the City Hospital starting in February, this is something Karine came across and enrolled us both in before Christmas. It should help us both to appreciate the positive things in life and the here and now and come to terms with the events of the last nine months.
To quote a few more Beatles singles, it's been 'A Hard Day's Night' 'Eight Days a Week', but with 'Help' 'We Can Work It Out' and 'Come Together'. 'All You Need Is Love' to get you through 'The Long and Winding Road'!
* Beatles - From Me To You - Their second number one single - 1963
No comments:
Post a Comment