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National Cancer Survivors Day

6/5/2016

2 Comments

 
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There's something wrong with this definition.
Apparently today is a special day ... National Cancer Survivors Day. In principle, I don't have a problem with the idea of celebrating those who have gone through a horrific disease and are currently free of disease (as far as they know.) The website for the event states: "National Cancer Survivors Day® is a CELEBRATION for those who have survived, an INSPIRATION for those recently diagnosed, a gathering of SUPPORT for families, and an OUTREACH to the community." For those who are newly diagnosed, knowing there are millions of survivors can be especially encouraging.
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.

2 Comments
Diane Leyerly link
6/6/2016 06:28:12 pm

I joined the Healing Odyssey for women diagnosed with cancer. I feel that they were the best thing to help me through my journey. We have a 3 day retreat which is so excellent that every lady comes out after the retreat with a whole different attitude. We actually have gotten phone calls and emails from families saying they were so glad their wife came home with such a change it made her last days so much better. It is such a good feeling to see their changes in such a short time

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Danette
6/7/2016 06:21:19 am

I am grateful that you are a survivor. Your sister danette

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    God's Story

    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

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