For most of us the days of being told how to live our cancer journey fell away when our treatments were over. Gone are the frustrating moments when well-meaning friends and strangers at Starbucks offer remedies, alternative therapies, and all manner of unsolicited advice.
But when you have mets, those opportunities keep on giving, until – well, until the treatment ends, and we all know when that is. Never.
So you can imagine my frustration by the wave of Good Samaritans, breast cancer survivors all, who seem to think that because they once had early stage breast cancer they are in a position to advise me about mine.
It’s not about treatment, thankfully, but it is about what is happening in the political world of breast cancer and it’s just as infuriating. I have a feeling we’re at a turning point among breast cancer organizations. Komen is still fighting it’s way back, NBCC is shifting it’s agenda. In my email box old accusations about ACS are being rehashed. And more and more of us are asking hard questions and demanding authentic answers. We are tired of the wool being pulled over our eyes. As we, advocates, become increasingly educated, as more and more money gets washed away in administrative overhead, as we continue to die, we are questioning – loudly – what is happening to the organizations who seek to or claim to speak for the plurality of the breast cancer community.
It’s interesting, because when I spoke out again Komen I was perceived as a well-informed, eye-wide-open, questioning sort of advocate. But now my questions are hitting closer to home – I’m asking for answers from the very organization that trained me to ask the questions. And those same people who supported me, vocally and visably, when it was Komen are now insisting that I don’t understand what is going on inside NBCC.
I readily admit that I have no inside track at NBCC. Nor did I at Komen. I hear the language they use, specifically about mets, and I ask questions. If I get answers at all, they are vague.
Do you have a mets agenda?
We have said clearly that we want to prevent mets.
How does that help those of us who have mets?
There’s only so much money to go around.
I get it. No one organization can do everything. I admire NBCC for all the training it provides advocates, for the platform that it has successfully (impressively) built, and for it’s commitment to a breast cancer vaccine.
Now, PLEASE stop telling me it’s a mets agenda. Invoking cell dormancy? Great – but we are SO remarkably far from having the knowledge we need for that to be a viable therapy that I can assure you I will be long dead before it arrives. But more importantly, SHOW ME THE MONEY. I have said many times on this blog, if you want to know what an organization’s priorities are, look at their budget, not their press releases. How much money is NBCC investing in metastatic cancer research. Real dollars. If THAT is a meaningful portion of the NBCC budget I will quickly, eagerly, enthusiastically eat my words and jump on the band wagon. If it isn’t, everyone who’s trying to teach me has simply had a hefty dose of NBCC’s pink Kool-Aid.
And until that information is publicity available, it is only polite to stop telling the metastatic breast cancer patients that you know best what we need and how to get there. Do not tell me I should be grateful that my disease might be seen as “chronic.” First, because it will only be “chronic” for a period of time, and second because you’ are not the one up at 3:00 AM wondering what your cells are doing, you’re not the one schelping to the doctor for treatment or managing the side effects.
For the love of God, if you are not a metastatic breast cancer patient please stop telling me how to be one! If you want to be in dialogue then you need to listen to me as well. You need to hear the voices of metastatic patients, not just the sales pitch from organizations that are looking for your money and your volunteer hours. I respect your choices in where you want to be a, who want to be involved with, but it’s time to respect mine is well.
