Home from the conference

I'm home now, enjoying the silence, drinking a beer and eating potato chips.  Don't judge me.

I'm pretty zonked after the weekend.  So much good stuff, but so many questions too.  I was really surprised and amazed at how often I heard about misinformation and confusion surrounding BRCA topics over the weekend.  Some of the women attending the weekend are breast cancer survivors - not BRCA mutants - and had honestly never heard of BRCA, or didn't understand it at all.  And of the women who were there who DID carry the genetic mutation, many expressed that they had encountered doctors and genetic counselors who were misinformed.

This is a BIG problem.

I went to the conference expecting to learn more about peer facilitating, and support groups.  I did learn about that, but I also learned that there is a need for SO MUCH MORE in the BRCA community.  Yes, we need emotional support.  But we also need information.  FROM the medical community - and we also need to GIVE information to the medical community.  And we need advocacy.  There are many family doctors in Ontario (and I'm sure across the country, as well) that don't know about BRCA.  Or they don't know what to tell their patients about it.  And then, once someone does eventually find their way to a genetic counselor (which is what you have to do before you can get the DNA test), not all genetic counselors know about the different support options that are offered to mutants.

I'm still very interested in starting a peer support group with Ansley, but I'm a bit hesitant.  I want to make sure that starting another group is the right thing to do (and that we can get the information out to the mutants who need it).  I'm afraid of the "if you build it, they will come" philosophy of starting a group.  I know from my marketing background that advertising and outreach is key... and how do we  reach out to mutants that may need our help if the medical community isn't informed? 

It may be that there is a lot more information and advocacy work that needs to happen before we start our group, or concurrently.  And, when I really think about it, this is the kind of work that really gets me going.  In my professional life, I'm a communicator.  Either by being an arts marketer, a publicist, or a graphic designer, it's been my job to communicate a message to the world.  And I hate bureaucracy and red tape - I like action.  I'm starting to think that my skill set makes me a better candidate for education and advocacy work than peer support facilitation.  Maybe.

But for now, I'm tired, and I'm going to leave this for a bit.  In my creative work, I understand the importance of the "marinating phase" - where you let an idea float around and breathe and marinate for a while.  It's not slacking off - it's purposefully trying to forget about something, so you then learn more about it.  It's a rather "zen" concept.

So I'm going to just let these thoughts marinate.  And see what comes out.  Oh, and we're definitely going to get together with other mutants that are thinking the same thing in the next few weeks.  Because when us powerful women get together, we can really do a lot.  Seriously.