Wednesday, March 5, 2014

Support for blood cancer survivors

Support groups for survivors of blood cancers are usually connected to major cancer centers which are not that easily accessible to people in places like Western Massachusetts, but Dr. Jay Burton of Springfield Medical Associates hopes to remedy that by starting a group in Agawam.

He spoke last night at St. John's Church Parish Center at a dinner sponsored by the Leukemia and Lymphoma Society. When I got the invitation via e-mail I didn't expect many people to be there. I was totally surprised to see a parking lot full of cars, and, inside, some 200 people, a combination of survivors, new patients, friends and family and other interested people.

I'm not sure if I would have joined a support group early on, but if I had wanted to, there wouldn't have been any available around here. There are breast cancer support groups and general cancer groups, but nothing specific to people fighting blood cancers. The only people who are on the same page as me when it comes to post-transplant issues are the friends I have met through the blogosphere, PJ and Anne. I know PJ in real life now too because we both went to Dana-Farber and both live in the Northeast, but it would be helpful to meet other people dealing with Graft vs. Host Disease.

I am blessed to have a large and wonderful support system, but really, how many people want to sit around and compare notes about lost teeth, tingling feet, messed up skin, side effects of prednisone, numbers of falls,  etc.?

Chances are I'd be able to help some newbies out, also.

I'm looking forward to attending the first support group meeting, which is scheduled for April 24 at the church in Agawam.


Ann said...

They'll be very lucky to have you as a resource. I remember those early days and how hard it was to find people in similar situations. So thankful for you and PJ.

Robin said...

I think you will be an incredible resource for people. An inspiration for sure. Awesome.