@pixiesusan
I am so sorry for your circumstances…everything is magnified especially when we feel so bad. One thing our healthcare system has taught me is we have to be our own advocates! We are our only patients…our MDs sometimes have so many they are stretched thin and pulled in many directions.
I don’t know how old you are however your team has options to treat you. Especially if a BMT is out of reach for you. It was presented to me and I elected to pass as the 100+ days of 24 hr care wasn’t doable plus the “cure” rate was 50/50. I am on maintenance and really feel great most days…in this my “new normal” life.
I pray things work out for you!