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Second opinions are important. So are attending support groups and joining clinical trials…

Home/Support/Second opinions are important. So are attending support groups and joining clinical trials…

Second opinions are important. So are attending support groups and joining clinical trials…

Wednesday I participated in a March is Myeloma Awareness Month even at the Watson Clinics in Lakeland, Florida.

This is a large complex/campus which features three or more large buildings covering what looks to be six city blocks.  I spent several hours in a newer, two story building dedicated to oncology; the Center for Cancer Care and Research.

While I was there, I had the opportunity to meet a number of the staff, including one of the social workers, a newly hired art therapy counselor and several nurses.

I was surprised to learn that a practice this large did not feature a multiple myeloma support group. Even though Lakeland is over 60 miles of stop and go driving away from my home, I offered to help facilitate a group.  Jennifer, a rep with Millennium Pharmaceuticals, also offered to help by providing meals for each meeting.

I had a whole list of tips I felt made getting a group started there–they treat three or four dozen myeloma patients–a slam dunk.

Easy, right?  LET THE EXCUSES BEGIN!

“Oh, we’ve tried to start groups here in the past and they never last.”  “I’m going on maternity leave soon and I’m not starting any projects until I return.”  “We are just so busy…”

I explained how another patient and I had started a group just over a year ago that now has over 20 active members.

“Management will insist a social worker be present if the group is hosted here in the building.” one of the nurses added.

“That’s OK!” I replied.  “The social worker could just show up at meeting time.” I explained.  “We would do all of the work.”  They weren’t sure…  “Or, since there are two other large oncology practices in the area (after all, it’s Florida!), why not hold the meetings off site in a neutral location.  Then the social worker wouldn’t have to be present at all…”

I could feel what little enthusiasm was left ooze  of the room, like air slowly leaking out of a limp balloon.  “Well… ”

“Too busy.”  “We have tried that before.”  I have heard all of the excuses…

Myeloma support groups are so, so important!  So are clinical trials.  I will be writing about why this weekend.  And you can bet I won’t be holding back my opinions!

But more importantly, I will be making suggestions about ways to get involved or start a group–and how to find a clinical trial that will work for you.

So stay tuned!  Feel good and keep smiling!  Pat