Cancer in itself is lonely but MDS is even moiré lonely. No support groups, no navigators, no one to tell you what happened to them.
It is so nebulous s- no stages
The chemo is so new can cause haring loss
Am on chemo forever
Wish for more definition – but life is uncertain
Do not even know how to pronounce much less spell until recently not even sure it was cancer.
Diarrhea the worst – very little nausea- but fatigue.
Start talking about bone marrow transplants and clinical trials – scary.
Worst is loneliness. Fortunately have friends and family support.
And cannot say I knew anyone who died of MDS!