My local hospice nurse came today and I had a good friend come too which helped no end.
I imagined that I could request to go into hospice, go on waiting list and when I had a date for a bed, stop my outpatients visits for blood products.
Seems I cant do it that way round. I have to stop receiving treatment, be at home on my own with possible risk of collapse or bleeding, then wait for a bed.
Fortunately there is a halfway house - go into a smaller local hospital where they will care for me but cannot give me the full treatment I have been having. Then wait for a bed in hospice.
Seems I am technically not dying as long as I am having treatment, even though that treatment isn't doing much to help me. But at least I have finally convinced them I am serious about taking next step.
Tessa
