I have been in hospital for over 5 weeks and keep getting minor infections. Doctor now thinks I will be safer at home. Yes I will be very glad to be at home but worry if I get a bad infection again I've got to come back. As I live on my own always difficult to arrange transport from a neighbour say, or sort out what I would need to bring. Plan to have a 'grab bag' permanently packed.
Then there will be outpatients twice a week for the rest of my life. Those visits are always so draining in themselves. Hope to use a neighbour care system for transport as long as hospital don't keeping changing times at short notice. It would all be very trying to a person in good health.
Not yet sure what palliative care support I can get through GP.
I may be stressing myself unnecessarily but I feel urgency to tie up loose ends for end of life arrangements. I have done the main things but there are still a lot of minor things I would like to deal with. I will write a detail list for my executor and see what I can get through myself while I am able. I have done a lot of history research and creative writing and don't want it all thrown in the bin.
I gather that if I feel I can no longer cope with outpatients regime I can opt to go to hospice. But they wouldn't be able to give me platelet transfusions that I need so would be giving up to have a quick end. I don't want to go down that route yet. If I can keep up some of my hobbies to distract me, and friends fulfill promises to take me out then I may be able to spend my time at home pleasantly enough.
Tessa
