CLL - CONTINUING THE ROLLER COASTER RIDE

At the beginning of March it seemed like I was heading for a remission. My counts were looking reasonable and my doctor suggested that 2011 might be a good year (the last 2 years being so hard). But by the middle of April the white cell count was well on the way up again (40,800). By May it had risen to 71,000 and I was starting to hemolyse again. I was told I am refractory to previous treatments and it was time to think about my future. We discussed hospice and end of life issues. I asked for and received a DNAR form (Do Not Attempt Rescusitation). It was decided that I would start a course of Chlorambucil + Prednisolone as a palliative measure. My doc suggested it was time to speak to my family about my poor prognosis. If there was no response to Chlorambucil then we would discontinue treatment.

REFLECTIONS ON COMING TOWARDS THE OTHER END OF LIFE

It's always been said that when I person is dying, their life flashes before their eyes. While I am not actually dying at the moment (I hope) my brain is engaged in a similar thing. My mind is constantly replaying episodes of my life - like a journal or a cine film. One minute I am at my daughter's wedding and the next I see my mother give me some gold earrings and when I ask why because it's not my birthday, she tells me it's because she loves me. It's really the only time I ever heard her tell me she loved me! There is something wonderful going on here. So many episodes of half forgotten things and great big things and things inbetween. For some reason the old bad parts aren't there, just the funny, happy times. They replay at night when I can't sleep (and this is often)and during the day - even when I'm cleaning my teeth. When mum was close to dying from CLL and we were on holiday together, I often caught her staring into space and now I wonder whether the same was happening to her. I do hope so.