Support groups

[Guest guest]

Dear China,

You are so right. When I was diagnosed, there were only a few booklets in

the rack that were so out of date and only a little about Hydrea and Inteferon.

I prayed I would not get Inteferon. Four years later, I was advised that I had

to first fail INF to get Gleevec, so there I was with the drug I dreaded the

most.

There were books out there I never learned about and support groups I was never

told about. You bet, girlfriend, we missed out on a lot that might not have

made a difference medically, but a whole lot emotionally. I joined a local

cancer support group, but I was the only one with CML and they were not

interested in me, they didn't know what CML was, but everyone had heard about

breast and colon cancer. I felt like I had a hex put on me, no one would talk

to me about my cancer. We need to know what kind of doctor to seek out and they

weren't CML specialists, so they didn't tell you. Transplants were talked about

in the booklets, but my age was a factor, so I wasn't broached about it. I

found out about ACOR through the American Cancer Institute, but they were not

forcoming with much news, either. Now we have people who can walk the walk and

talk the talk. Thank goodness times have changed.

Blessings,

Lottie