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.
And yet.
(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.
No Half Measures 
Thank you for including me!!
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Yes, I’m afraid I could never got on board with the pink fluffiness side of cancer. I understand that it’s how many a survivor chooses to celebrate that fact, also that it’s a manner by which funding can be raised for continuing research. But, but, but…. it makes me shudder. I’m very fortunate. My cancer was very small, found very early, I had minimal treatment, and am currently at 11 years without evidence of disease. But I know too many who didn’t have as good a prognosis as I had and have died, a small number who had as good a prognosis as I had, and yet died, alongside those still hanging on in there as I am. And that’s before I consider MBC. I generally keep those feelings to myself as they’re not welcome, and I’ve been called a joyless f***er for expressing them.
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I’ve had some bad experiences when attempting to explain that the label survivor doesn’t apply to me, that it doesn’t resonate with me. I think those who want to celebrate should; at the same time, those same people need to understand that it’s not a celebration for many.
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Very thought-provoking.
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Hi Abigail,
Thank you for articulating your points so well. I agree completely. I’m not a fan of this particular day either, as you know. I’ve seen some changes over the years in the mission statement. I think NCSD intends to include folks like yourself under that “chronic” designation. That doesn’t cut it for me either. As I say every year, I am still just not that into it. I don’t even like the survivor label, though I use it sometimes for lack of a better word. On the other hand, I don’t mind the term survivorship. Go figure. Thank you for sharing your thoughts on NCSD.
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I totally agree with you about survivorship, which is in present tense and something everyone with cancer is literally immersed in. And trials are starting to include MBC patients in looking at survivorship, which is a good trend.
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As always, you raise thought-provoking points. I don’t think of myself as a cancer survivor first. Maybe DVT since that’s been going on for 8 months, and I finally got off that medication. I’m pretty sure that my cancer prevention treatment played a role in the DVT. Nonetheless, I do value every day that I have. You still have pain and constant treatment, surviving is different than overcoming, I think. I know you don’t like the battle metaphor, but it is ongoing, not over and we can visit a memorial for the ones who died in battle. No, we can’t. The toll is ongoing. So we don’t know whether we are a survivor until we die and there is no cancer found in our autopsies. That’s morbid! The only thing that any of us who are still living have is each minute. People who survive a war can walk away from it knowing they never have to return. Cancer victims can’t do that. I wish you the best for today and I’m always glad to see your face on my blog as a sign that you live. My prayers are that you will enjoy your grandchildren and continue to be a support in your communities. 🙂 Lots of love, Abigail.
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From your lips to God’s ears!! My kiddos are 7 and 9, so to see my grandchildren is a dream at this point. Happy to see all of the progress made as I watch ASCO this weekend. Appreciate you reading and commenting!!
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You are a bright spot Abigail. I want you to out live me by decades! ❤️❤️❤️
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Thank you for your candor, for the pink elephant. Growing up, we learned not to talk about serious things openly or really at all. My mother had cancer, and it was difficult (not impossible) to break through with serious suggestions (or suggestions that would be taken seriously). With my father and his cancer, it was worse. His closeness with my sister and her literal proximity helped get a few things said and done. Now my older brother is living his metastasized life with prostate cancer (discovered way too late), and collectively we’re sort of doing better. He talks with my brothers and my sister about what’s going on, and I send him words and things. And when we all get together, we know the elephant pretty well to deal with it. It ain’t a perfect situation, but it’s all right. Maybe each generation will get better at communicating. For now, we’re doing pretty well at that and even better at doing things for each other. Sorry if this sounds scattered. It’s a scattered way.
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I hear you — all we can do is better when we know more. And it sounds like you are doing a really great job at supporting your brother. Acknowledging and supporting consistently in your own way is key. Love and hugs to you and your family.
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And to you and your family.
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I fully agree with you. I don’t do relays, walks, or whatever because as an MBC person I feel like I don’t belong.
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I’m always torn between attending to educate and avoiding bc I know that the education isn’t always welcome. Depends on what energy I have to spare, which is not much these days. Hard to know what’s best.
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