According to the website, NCSD.org, National Cancer Survivors Day® (NCSD) is the first Sunday in June each year and is set aside as:
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.https://ncsd.org
This organization, as many others do, define a “survivor” as follows:
A survivor is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.
– If you’ve just been diagnosed with cancer – you’re a survivor.
– If you’ve been in remission for 20 years – you’re a survivor.
– If you’re an adult who had cancer as a child – you’re a survivor.
– If you’re living with cancer as a chronic disease – you’re a survivor.
– If you’re currently in active treatment for cancer – you’re a survivor.
– If you’ve beaten cancer and been declared cancer-free – you’re a survivor.
Whether you’re in treatment, just diagnosed, or have been in remission for 20 years, you’re a cancer survivor.https://ncsd.org/who-is-a-cancer-survivor/
It’s hard to tell if Stage IV Metastatic Breast Cancer (MBC) fits into this list at all, but I suppose the category of “if you’re living with cancer as a chronic disease” would be the one closest. Now, if you’ve been reading my blog for any length of time, you know that I have some strong feelings about this concept of MBC as a chronic condition. Specifically, I don’t believe MBC to be a chronic condition, yet. Those who believe it to be chronic, in my view, are looking at a specific subset, a specific subtype, and trying to extrapolate out to the whole. At this point, in my opinion, the details don’t add up to conclude that MBC as a whole is a chronic illness and, as an advocate, I believe the desire to label MBC chronic is actually a significant detriment to the entire community.
But I digress.
Some people have communicated to me that since NCSD is intended to be inclusive of people who have ever been diagnosed with cancer, I am included in this celebration, inspiration, support and outreach effort. Don’t get me wrong, I think the entire world needs more celebration, inspiration, support and outreach; and much of my life as an advocate is dedicated to this effort in the MBC Community. Except, much of Pinktober is like this, with the parades, the fluffy boas, the rah-rah spirit of having endured and conquered a cancer diagnosis.
I get it.
We all need those things, at times.
When our spirits are flagging and we dwell in a valley of despair, something big and splashy and shiney is often exactly is needed.
And I don’t begrudge the survivors their parades, their boas, their rah-rah spirit, they’ve earned it. My mom is a survivor of DCIS from a few decades ago and I know how much it buoyed her spirits to participate in the walks and celebrations. These events can be a significant part of healing that which cancer obliterates.
(You knew that was coming).
These events are just another place where those of us with Stage IV MBC (or other metastatic cancers) are still the pink elephant in the room. It’s not just about the label, it’s about ignoring what it is like to live with the sword of Damocles hanging over heads every single day; it’s about how Stage IV is terminal, not chronic; it’s about being relegated back to the shadows so that the “successful” survivors can be paraded about, so that the serious ramifications of cancer are once again glossed over and dressed up.
Am I bitter about this?
That’s a line that I flirt with often. I honestly don’t begrudge celebrations, from bell ringing to dancing in the street, I think people should deal with cancer in the way that helps them cope. The survivorship concept (which I’m 100% behind) applies to anyone who has ever been diagnosed with cancer all the way to those of us who will be killed by cancer before the natural end of our life expectancy. In this often no-mans land of ongoing side effucks and the toll on our bodies from cancer and the treatments, we all need help and support. And some people need the parties and the fluffy boas and the rah-rah spirit.
I don’t begrudge someone their celebration.
I am just too much of a realist not to think about how cancer isn’t actually chronic, that approximately 30% of those diagnosed with early stage breast cancer will receive a metastatic diagnosis sometime in their lifetime, that the “cure” verbiage often used is misleading, that the age group where MBC diagnoses is growing is those of us diagnosed under 40, that I still lose friends nearly every day, that I meet new men and women freshly diagnosed nearly every day in support groups online, that we have no time to stop and celebrate when there is too much work to be done.
Where I dwell in this experience with cancer, the urgency of research and new medication and solutions is ever present, often overwhelming. I get that not everyone wants to be in that heightened state of awareness and worry — I can’t always sustain my focus either.
Bottom line? I don’t believe the label of survivor applies to those of us with Stage IV cancer and since cancer will ultimately kill me, a day of celebration for survivors doesn’t appear to include me or those of us in the MBC community. It never feels good to be excluded. And then I think about how all the $$ being raised to celebrate survivors could be used to further research, could be used to actually find a cure, could be used to ensure that I might get to see my kids grow up, dance at their weddings, meet my grandchildren.
For now, that’s just not likely to happen; unless and until I could actually survive terminal cancer.