Question for my MM/cancer pals (both patients and caregivers):
My support group often doesn't have a specific topic; it's just people getting together yakking about vacations, movies, whatever pops into their heads. I find that a huge waste of time and would prefer a specific topic, related to MM. A few examples might be:
- What does remission really mean?
- What exercise/fitness programs are realistic and safe for MM patients?
- International travel for MM patients?
5 comments:
Is there someone in charge of the group? Can you ask that person to set topics?
There are two facilitators, an oncology RN and a social worker, but they always insist it's "our" group, not theirs. I'd rather present her with a list of possible topics instead of just registering a gripe and asking them to come up with ideas.
This WSJ article might give you some ideas to share with the group:
A New View, After Diagnosis
That's a tough one. I tend to go the "classes" for answers to questions that you posed, offered by the treatment facility when we are there. And yet, I get "support", laughing and telling jokes in the waiting area with other patients and caregivers and often we launch into wonderful philosophical and deep conversations. I agree that I wouldn't want to take time out of my day, however, to go to a support group that talks about movies. I would however drive for a "social" gathering and hang out. Emmmm.
How about asking about supplements that might help myeloma patients in various situations, e.g. those who are taking chemo and those who are not? (if you'd like, I could send you studies on various substances that have been found to potentiate some of the conventional MM treatments while protecting the healthy cells.)
And how about nutrition? You might just get the standard refrains, "eat umpty-ump servings of fruit and veggies a day," and "supplements don't do anything," but you just might hear something new and/or useful...
And how about the new "Blood" study that I just posted about yesterday, the one about the nail fungus treatment that has been found to kill MM and leukemia cells? I found that very interesting.
Oh yes, I have heaps of questions...but you see, I don't have a support group over here, it's not in the Italian mentality...if I did, though, in addition to asking questions, I would like to discuss with other patients the pros and cons of substances (only the scientifically-backed ones) that might help me feel better and, hey why not shoot for the moon?, remain stable for as long as possible. I am convinced that there ARE things we can do in this sense...and I would be oh so curious to hear an oncology nurse's opinion...
Just my own ramblings...I will stop now. :-)
Ciao from the mad curcumin-taker with SMM in Florence Italy!
Post a Comment