I expected more than a medical doctor touting the "wonders of homeopathy (diluted water)," especially after saying that her entire presentation was based on evidence-based research. No mention of the fact that homeopathy has been debunked many, many times, with even more clinical trials proving homeopathy is a fraud coming out just last week.
I expected more than the perpetuation of the myth that if you live a clean lifestyle and follow the right anti-cancer diet, then, you, too, can be cancer free! (Therefore, subconsciously ostracizing those with recurrent disease because, "Hey, you must have done something wrong!")
I expected more than a resource fair that had a booth sponsored by a group that includes "Cancer Prevention" in their name. The woman at that table was not even aware that breast cancer can spread through the blood stream and not just through the lymph system.
I expected more than the speaker for "Updates in Metastatic Breast Cancer Treatments" to talk about the history of treatments and to not have a single new piece of information. I expected more than her to dismiss metastatic disease to the same category as diabetes and call it a chronic disease with "years of expected survival," only for her to admit that her definition of "years" is anything over three years.
I expected more than a swag bag with "Pinktober" on it.
I expected more than a "nice" day. I felt like I was at a sorority sister reunion with absolutely no sense of urgency at all involved in solving the problem of breast cancer. No one was aware of the reports coming out of Lisbon from the conference held there the first week of November.
Hearts were in the right places. Lots of hard work went into this day and as I said, it was "nice." When I go back to look at the description of the event, though, it uses the words, "cutting edge" to attract people and there was nothing "cutting edge" about it.
I take that back ... there was one cutting edge speaker and that was Dr. Elly Cohen from the University of San Francisco and her presentation on Understanding Clinical Trials. She promoted a new website, Breast Cancer Trials, a very helpful tool in looking for trials. There is a section for metastatic patients in that as well.
I asked pointed questions throughout the day. I pretty much stormed out of the woo-woo doctor's presentation out of fear that I would start yelling at her from the audience. I expressed my concerns to the program director of the sponsoring organization and to the chairman of the board for the sponsoring organization. I could tell that they were taken aback at my comments because, once again, their expectation is I should be grateful for all that has been done to make the day happen on the behalf of all breast cancer patients. (Side note ... this conference also covered ovarian cancer, but I can't address those topics.)
I wore one of my "Pinktober" shirts ("No cancer here, but ... " on the front and "What about the rest of me?" on the back.). I spoke up every chance I could to bring more attention to the world of metastatic breast cancer. I had several strangers thank me for my questions. I handed out my card all over the place. I had too many tell me that I was an "inspiration" and that I was "so strong" to do what I was doing. One person asked me to consider having a display table at next year's conference.
I woke up this morning to the news of another death. While I was out having a "nice" day, another 110 in the United States died of this "nice" disease.
I don't want to be strong, nor do I want to be an inspiration. I want people to be urgently aware of the reality of breast cancer and I want people to DO SOMETHING! I want people to learn more about the reality of this disease rather than basking in the pink glow of misconception.
I want so much more than a pink ribbon. I refuse to be silent in order for others to stay comfortable. As Plato once said, "Your silence is your consent."
Until metastatic breast cancer is at the very forefront of the breast cancer conversation, we are giving consent to the pink clouds of affirmation. If we're not aware of metastatic breast cancer, we're not aware of breast cancer at all.