Hi @Hughbie and thanks @Jules for additional info.
I co-host these meetings with Nick York. Nick sometimes send summaries of what was discussed to attendees and those who registered-but not always as he’s quite busy hosting a lot of other Leukaemia care meetings.
There were 17 attendees, including myself, Nick and Emily, a Leukaemia Care Navigator from the South West, observing meetings to get an understanding of particular issues from people with certain types of Leukaemia.
Most of the attendees spoke about their experiences of their diagnoses and symptoms of Chronic myelomonocytic leukaemia ('CMML')- except for a couple who left early.
Themes were:
- Fatigue and how debilitating it is and how to manage
- NHS/Hospital access to patient records - a mixed experience with some hospitals having very accessible patient info and others still relying on sending paper letters from consultant!
- a person with experience of a stem cell transplant 2 years ago - still dealing with Graft-versus-host-disease ('GVHD') but overall glad to have been given the transplant
- a person on active monitoring and not really having any symptoms - tracked own blood counts using a spreadsheet
- concerns about the limited range of treatments available for Chronic myelomonocytic leukaemia ('CMML')
- possibility of getting an additional opinion at a specialist hospital
- many attendees on active monitoring
- discussion on frequency of hospital appointments -ranged from 3 monthly to 6 monthly
Hope your hospital appointment goes well and that you enjoy your Spanish holiday? Are you walking the route? If so, well done! Seems very long!