I have no problem celebrating my friends who are cancer free (as far as they know). What I do struggle with is that, believe it or not, I'm considered to be a survivor as well. According to the National Coalition for Cancer Survivorship, survivorship begins at diagnosis. They go on to say, "A cancer survivor is defined as anyone with a history of cancer, from the time of diagnosis, and for the remained of life, whether that is days or decades."
I struggle with that definition. I am surviving with cancer, but I will never be a survivor. Cancer will never be a part of my history. It will always be a part of my present. I will never stop treatments and I will always live with the very brutal reality that cancer is killing me. Every single day, those cancerous cells are destroying more and more of me until the day comes when they will stop my body from functioning ... and I will die.
I am not a survivor and I never will be.
I don't resent the celebration of those who are. This is what I ask of you, though ... please don't forget those of us who do not fit in that category, regardless of what well-meaning organizations say. Those gentle words, once again, are designed to inspire hope in the newly diagnosed and do not represent the reality of those living (and dying) with/of metastatic disease.
Celebrate today! However, tomorrow, speak up for those of us whose voices are being silenced. There is coming a time when I won't be able to communicate any further (and that time may be sooner than later) and I will need you to pick up my voice and continue to press on for it to be heard. Don't forget those of us who will not survive. 595,690 people are expected to die in the United States alone in 2016. Who will speak for them?
Laurie Becklund of the LA Times wrote in reference to metastic breast cancer:
"The most powerful organization in the breast cancer universe, Susan G. Komen, has raised $2.5 billion over the last 20 years, much more than many corporations will ever earn. Yet Komen channels only a fraction of those funds into research or systems to help those who are already seriously sick. Most of that money continues to go to a breast cancer “awareness” campaign that is now painfully out of date.
"We need people — patients, doctors, scientists, politicians, investors, families — to make a fresh start. We must create a new system of data collection and an open, online, broad-range database about patient histories that will provide information invaluable to those who've been given a death sentence. Patients as well as doctors must contribute." http://www.latimes.com/…/la-oe-becklund-breast-cancer-komen…
A fresh start. If you are a survivor today, please consider making a fresh start tomorrow in how to bring about change. There are too many cancers that are ignored by the public because they aren't cute, pretty, sexy and pink. There are too many cancers who don't make money for corporations; therefore, they garner little attention. There are too many cancers people don't want to talk about.
Most patients with metastatic disease of any kind are not counted in national cancer regristries. This is what Laurie Becklund was referring to when she talked about creating a new system of data collection. How can you track and treat those you don't count?
Celebrate today! Count us tomorrow and be our voice. We're dying and we need you.