Last night I went to the first meeting of the new Western New England Blood Cancer Support Group organized by the Leukemia and Lymphoma Society, and although I can't even sketch out the details due to confidentiality, I can say that I already found support in hearing stories that were even more crazy and mixed up than mine, the kind you can only hear from people with blood cancers.
Out in the world you don't hear much about blood cancers, and the only kindred spirits I know are my fellow leukemia bloggers, PJ and Anne.
The group is for family members, friends, survivors and patients. (Some people don't like the word "patients" because whether you have gone through it or are going through it, you are a survivor, but it serves a purpose of showing what stage of the process people are in.)
I was able to offer support, giving some tips on this and that and serving in my role as a Dana-Farber cheerleader, assuring people that the geniuses out there, luckily so close to home, will figure it out if anyone can.
I am getting the name of a patient about to get her third bone marrow transplant out in Minnesota. Naturally she is scared about it, and I am living proof that it can work. Also, not that I don't think of my donor, Denise, all the time, but I heard some stories that made me more thankful for her, if that is possible.
Being Jewish (is this a Jewish thing, or maybe a reporter's thing?) I had a bisl of food before so that I shouldn't starve in the dinner time meeting, but there was a nice spread of food.
I got home just in time to see the exciting overtime in the Bruins game, in which they beat the Red Wings 3-2, and then I stayed up to watch the interviews. Sorry to state the obvious, but there are real people under those helmets. I like actually seeing their faces.
Too wound up to go to sleep, I stayed up and watched a bit of The Tonight Show with Jimmy Fallon and got my first look at his dancing Panda. I also saw Aerosmith's Steven Tyler sing the message on the answering machine of a woman whose name was picked out of a hat. Called up to the stage, she giggled and smiled. Really fun.
The support group is facilitated by oncology professionals including Dr. Jay Burton of Springfield Medical Associates, a fellow AML survivor. More information is available by emailing cancersurvivorship@gmail.com. Meetings are scheduled for the fourth Thursday of the month at St. John's Church Parish Center in Agawam.
Showing posts with label blood cancers. Show all posts
Showing posts with label blood cancers. Show all posts
Friday, April 25, 2014
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.
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.
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