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!

Leave a Reply