Thursday, June 11, 2009

I don't want to be a bitter old hag, really.



Sometimes, as a lung cancer advocate, you can feel a little bitter. Or at least I can. Let me explain:

Last night I went to my monthly meeting at Mass General Hospital in Boston. I’m part of the Patient and Family Advisory Council (PFAC), which is yet another example of how phenomenal MGH is.

MGH actually seeks feedback from former patients and family members about new and current initiatives, new projects and how to spend their money.

The topic that came up last night was “Bucket #5” which is basically a pool of money that hasn’t yet been spent. They want us to help figure out how to spend it.

As part of the exercise, we were given a quick refresher course on all of the fantastic programs available to patients in the MGH Cancer Center from the healing garden to social work and psychiatric care, acupuncture and ride services, support groups, etc, etc.

Then they came to a program which made the bitter creature inside of me start to twitch: pilates classes for breast cancer survivors.

I asked if other types of cancer survivors could join the class, and our group leader said apologetically, no. For one thing, she said, it’s funded with breast cancer money, as a lot of the extra MGH programs are funded by donors. And for the other, breast cancer survivors need this kind of class because of the terribly invasive surgeries they have. They need to rebuild their cores (ie, abdomens) after breast cancer surgery.

I do not begrudge the breast cancer patients their pilates, but this kind of distinction and frankly, class divide, brings out my bitterness.

What about ovarian or uterine cancer survivors? What about stomach cancer patients? Don’t they need their cores strengthened too? And of course, what about lung cancer patients?

Recovering from lung surgery, where in many cases ribs have to be broken in order to access the lungs, is no easy feat.

It would be nice to have a lung cancer-exclusive pilates class too, but the money from the lung cancer community can’t be allocated to such niceties as pilates. The money that we raise has to go straight to research. We have to help people live first and worry about “feeling better” later. Feeling better is a luxury we just can’t afford.

The thing is, breast cancer didn’t always have its own pilates classes and billion dollar foundations. It took the work of a LOT of advocates to stand up and say we ARE going to talk about women’s breasts and we ARE going to advocate for screening.

So when the bitter old hag isn’t screaming in my ears, I look at the pink behemoth of the breast cancer advocacy movement and bow down at her in awe. What they have done is incredible. I just hope we can do it someday too.

And - the upside is that the underdog eventually wins. Cinderella found her prince, the Red Sox won the World Series and hopefully, with enough work, lung cancer will have the luxury of our own pilates classes (and a whole lot more).

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