Sunday, April 24, 2011

Support for the East Valley

When I visited my doctor in March, I mentioned to him the death of Debbie Z. from the hospital's breast cancer support group. Debbie had metastatic cancer, and was one of those with metastatic disease relegated to the support group for all of breast cancer-dom, with no regard to the differences in Stages 1-3 and Stage 4. I wondered aloud to him how the facilitator would have handled this in group, and expressed to him how angry I was still with her for her refusal to acknowledge that a mixed group was not serving the needs of all. I told him of being accused in group of playing "Cancer Olympics" and the feeling that anything Stage 4-ish got the 'shush' in group. 

Yes, this is the facilitator with whom I  butted heads over the wording under my painting last spring. Same facilitator with whom another friend with metastatic cancer, Lisa, (whom I met on Inspire, but never in person, though we were patients at the same medical center) butted heads over the need for metastatic support and separate groups, and then simply gave up and went to a more distant and less convenient place for support. Lisa passed away metastatic breast cancer just a few months ago as well.

When I told my doctor how mets was 'shushed' in the group, he was upset and said "that's not right", and that he was going to have a talk with that facilitator.

I had forgotten all about our conversation until I saw him this month, and he said that by the way, there was a new support group starting for metastatic cancer! And he said it was thanks to me. He will attend the first meeting, coming up the first week in May, and act as a medical liaison of sorts to the group. Of course, tears sprang to my eyes. I will of course attend faithfully. I hope it goes well. I hope it is for all metastatic cancers, ie, ovarian, etc, and not just breast. I won't know until I go, as this is all the info I got from him.

I want to ask all my friends here and at Inspire to give me some thoughts and ideas to take with me to the group, as to WHY it is important to have a group for metastatic cancer, and not just combine it with all stages of breast cancer. I fear being the only person at the first meeting, and want to be armed and prepared.

I also think I will take a rose, one for Debbie Z. and one for Lisa R., and place them each on a chair with a name card. I hope this will emphasize the differences between breast cancer and metastatic cancer, and what we face that those in early stage breast cancer don't need to face on a monthly basis. 

1 comment:

CancerCultureChronicles said...

This is GREAT news Shelli. Good for you, and a win for MBC! For me one of the most fundamental differences, is that breast cancer is never over for those of us with MBC. That's a bitter pill (no pun intended!) to swallow, and something that I struggle with on a day to day basis. It's very difficult to just check our cancer at the door, and believe that everything's going to be ok. It is a relentless struggle, from which there seem to be no vacations. I have almost forgotten what it was like to not be living with cancer. And this is the way it will always be. No celebrating and donning the triumphant mantle of "survivorship" for me, just living every day the best way I know how. Being able to talk about the daily frustrations of just these facts alone would be reason enough for me to want to separate the groups out. Please let us know how it goes!