Hi
I was diagnosed in March and my treatment stated in June with Velcade Daratumamab Thalidomide etc
I don’t know about anyone else but I feel I have not received the information I need regarding everything.
Quite a few cock ups have happened.
The first delivery of my Chemo drugs had the wrong date of birth
The second delivery had three different tablets missing. When I rang up to inform them I was told I was not to take those tablets again even though they appeared on my timetable sheet.
Plus other mistakes too many to list.
I was admitted to hospital with Arterial Flutter and according to my discharge paperwork, Sepsis. I was in hospital for 4 nights.
Some weeks later I had an appointment atbthe transplant hospital with regard to my harvesting. The doctor wanted me in the following week. I explained to him I was still on chemo tablets due to my admission and my tablets had been suspended for 3 weeks.
He was totally unaware of this as the hospital I was admitted to had not informed them.
My appointment had to be put back. My harvesting was completed last week over four days until they collected the required amount.
It has never been explained to me what the course of action is if I decided against the transplant.
I am and always have been an I dotter and a T crosser, so it isn’t easy for me to accept snippets of information and not the whole story.
Conversations by telephone with my consultant are few and far between and can only be described as rushed.
Am I being over sensitive but it is cancer after all.
