Survivor

National Cancer Survivors Day & Why I Can’t Fully Embrace It

The first Sunday in June is National Cancer Survivors Day. This is a day marked and intended to celebrate life and honor all those who are living with a history of cancer. What could possibly be wrong with this? On the surface, nothing at all, but…

Why is it so hard for me to fully embrace such a day?

My thoughts on this particular day’s designation have not changed much since I wrote “What’s Wrong With a Survivors Badge?” back in 2011. And yes, I’ve been blogging that long! I was uneasy with such a day designation back then. I still am. 

I don’t care much for most labels. Never have. I don’t care much for the cancer survivor label either really. Admittedly, I have yet to come up with another word that works better, so yes, I use it too. I don’t wish to repeat myself, so you can read my thoughts and reasons for my uncomfortable-ness regarding the survivor “badge” via that earlier post if you’d like.

As I read through that earlier post and then the comments, once again, it hit me why I cannot fully embrace this day.

It feels a bit too celebratory. It sounds a bit too triumphant.

Yes, more and more people (some 14 million cancer survivors in the US alone) are surviving cancer. Yes, there is life after cancer (but not for everyone). Yes, life is always something to celebrate.

The intention of this day is to show what life post-cancer looks like (Good intentions perhaps, but is this really possible?) Here’s what’s stated on the website:

National Cancer Survivors Day is an opportunity for cancer survivors to come together and celebrate this new reality in cancer survivorship. There is life after cancer. It may not be the same as before cancer, but it can be beautiful, rewarding, and sometimes even better than before. And that’s something to celebrate.

So what’s my problem?

For me the crux of it (in addition to that ‘better than before” slippery slope) is that once again, it leaves out those who have not survived.

What about them?

Where’s their day?

We cannot continue to erase those who die from metastatic disease. We must never give the impression that we have beaten cancer because we have not.

And what about those presently living with mets?

They’re sort of in this survivors’ circle, yet at the same time, sort of on the outside looking in.

Back to that earlier post of mine… reading through the comments, I realized that on that one post – three women who commented have died from metastatic breast cancer since they left their comments. Two others have since been diagnosed with metastatic disease. That’s five women right there, whose families might not be feeling quite so celebratory about the state of affairs in Cancerland on this day or any other.

So yes, let’s celebrate life, caregivers, supportive friends and communities, talented and dedicated medical teams and scientific break-throughs and all the rest of the stuff worth celebrating. And kudos to the backers of this day for intending to shed light on the quality of life challenges that so many cancer survivors face for the rest of their lives.

However, the blinders must never be put on, not even for a day.

We must not forget that people are still dying from cancer. People are still living through horrendous cancer treatments. People are still trying to manage debilitating and long-lasting side effects from cancer treatment.

Let’s not pat ourselves on the back too many times on this day or any other.

And most survivors do not care about being patted on the back anyway, nor do they necessarily appreciate being referred to as brave or courageous; at least this one does not. (This is another goal of the National Cancer Survivors Day, that’s why I bring it up).

As my very wise friend Rachel, author of the Cancer Culture Chronicles, commented back then on my Survivor’s Badge post:

I don’t appreciate made up holidays like National Cancer Survivors Day ™ which is sponsored by our friendly big pharma corps. You can even buy medals and badges to hand out at these events, because of course there’s a merchandise catalogue.

There’s no one-size-fits-all approach to how people deal with cancer at any stage, and this is where the concept of “survivor” gets cloudy for me. Aside from being a person with stage IV disease, these branded kinds of celebrations feel a bit vacuous to me. Obviously no one is ever the same again after a cancer diagnosis, but I think as a culture we need to be very careful about what we choose to celebrate. By celebrating survivorship are we implying that we have been successful in fighting the collective cancer battle? Doesn’t feel that way from my perch.

Well said, Rachel, (AnnaCCChronicles was her pen name) and terrific question too.

So as for celebrating on National Cancer Survivors Day, although of course I’m grateful to be surviving, I think I’ll pass on the celebrating part.

Call me an oddball if you want, but I’m going to remember and celebrate the lives of those who have not survived.

As far as I’m concerned, those are the ones who deserve the honor every day.

How do you feel about National Cancer Survivors Day?

How do you feel about the survivor label?

Note:  Since that original post was written, these three women (who left comments on that one post) have died from metastatic breast cancer:  Rachel Cheetham Moro, aka The Cancer Culture Chronicles, Shelly Ray Gibbons, aka The Dirty Pink Underbelly and Cheryl Radford, author of the blog, Indigo Dreaming. Miss you all, ladies. We will not forget.

Survivor

 

48 thoughts on “National Cancer Survivors Day & Why I Can’t Fully Embrace It

  1. It’s interesting that big Pharma is involved in promoting this day. I, for one, do not like the “hero” label either. I see myself as dealing with a life threatening condition the best I know without knowing if it will rear its ugly head sooner or later. I guess cancer sojourner might be more appropriate.

    1. Rose, I found that interesting too. In all fairness, “Coping With Cancer” is a backer too, among others, but big pharma is a major player. ‘Cancer sojourner,’ that’s not bad. Thanks for sharing.

  2. I’m with you on this. My new cancer center has a very nice, totally free VIP-day at the ballpark planned for cancer survivors this next week. I was thinking of covering the event for freelance and was already working out my lead–“First, let’s make clear that what any person who has experienced cancer really wants is a cure. But since we live in a world short of that…” and I’d probably wrap around again to the point in the end. It’s an idea with limitations that is for sure.

    1. Lopsided blogger, I hope you do cover the event… It’s nice your cancer center is providing that outing for cancer patients for free. And yes, the limitations… Of course, we need to celebrate the good stuff, but as I said in my post, the blinders can never come off. Thanks for reading and commenting.

    1. AnnMarie, I think most of us have mixed feelings. We’re always trying to walk that line and sometimes if we “complain” or speak out, we are perceived as not being grateful, which is not the case at all. It’s complicated. And I bet if anyone could get those two days you mentioned designated, it would be you!

  3. Nancy, I too have very mixed feelings about Survivor’s Day. I am very thankful to be alive. I have much in my life to celebrate, especially friends and family. But, Cancer Survivor’s Day? What? I should celebrate that instead of another 20 or more years, I get another 5 or 10? Am I even a real survivor if I am metastatic?
    If the ship sinks, you get in lifeboats. But, you don’t want to stay in the lifeboat, you want to get picked up by a ship that takes you to shore. If you are metastatic, you never get to shore, you just stay in the lifeboat, in treatment, until your lifeboat sinks.
    Maybe I’m just grumpy today. Today I went through a PET scan, blood work, and fasodex injections, and right now, I do not feel very good from (take your pick) going half a day not eating, drinking yucky purple stuff, getting radioactive stuff shot in my veins, and very painful injections in my bum that even without the PET scan make me feel lousy the rest of the day.
    How about something more honest? A day to honor those lost to this disease, and a day to pray for cure. A cure so we can become real survivors, so we get out of our fragile lifeboats and finally step onto the shore of being well and healthy.

    1. Elizabeth, You are not grumpy, you are honest and right on. Rest up from all those procedures… Thank you for reading and sharing your insights. We need to hear them.

  4. I think I shrugged this day off last year. Today, I clicked on the link you provided and see phrases like “celebrate” and “show what life is like after cancer”. Given that I’ve had too many health issues in the past few months, including a scare of recurrence, I am NOT the picture of life after cancer they want: scared and anxious, and dealing with a changed body and life that is not “better” (unlike what is indicated in the passage you quote) thanks to cancer. So I’m a bit more Curmudgeonly than usual on this topic.
    That said, I realize I’ve written about this quite a bit. I reject the survivor term because I have not died of something other than cancer yet. I reject all the kicked cancer’s ass sentiments as well–I did no such thing. I purchased treatment and was lucky that it has worked so far. I do not want to engage in this celebration that just does not help me–I know it works for many others. That is fine. But count me out.

  5. The problem is for me my life has never been the same… Also both my dad and grandfather dies of cancer.. So this day brings many questions with it… The day they have a cure will be the day i celebrate!!! Thanks as always for raising this thought provoking topic ..

  6. Nancy, as usual you put my thoughts and feelings into words. Thank you.
    I had a meeting with a new supervisor and somehow my cancer diagnosis came up and he said “You’re a survivor!” and I said “Not until I die of something else.” and he said “Well, I’m glad you’re alive.” and I said, “What would be the converse?”

    I will not allow people to feel comfortable by minimizing my experience and all the losses I’ve incurred.

    I’m dealing with long term side effects of my treatment and a sense of insecurity and ill health, and yeah, I’m surviving, but I can’t celebrate getting breast cancer.

    1. Kira, “I will not allow people to feel comfortable by minimizing my experience and all the losses I’ve incurred.” I really appreciate those words. Is NCSD a bit too celebratory? I think it is. Thank you for reading and sharing your thoughts on this.

  7. Nancy, I’m with you on this made-up holiday. I think celebratory days for cancer are ridiculous. These holidays are just lip-service to Big Pharma to make us think we are making progress in “beating cancer” but we are not. Metastatic breast cancer is ignored, and people just keep celebrating these made-up occasions.

    And those of us without metastatic cancer (so far), life does have rewarding moments, and survivorship is wonderful. However, we are never the same, and psychologically and physically we are damaged by the experience. Treatments leave us in bad shape and we have to contend with PTSD and other problems.

  8. I’ve never like the term ‘survivor’ or the notion that having had a cancer diagnosis and still being here is an achievement. It feels very strange to be seen as a ‘hero’ for something you can’t take any responsibility for. It bothers me that this terminology is applied in the context of cancer but not usually in the same way for other diseases that are also potentially life threatening. And I think the emphasis on the increasing numbers of survivors in something like a National Survivors Day suggests we’ve made greater strides against the disease than we actually have, and in fact works against the kind of informed awareness that we need more of.

    1. Lisa, I agree with everything you said. I think such a day does give the impression that we are doing better than we truly are. And I am bothered by the statement on the website which implies life post-cancer can be better. While this may or may not be true, it’s a slippery slope and it’s a certainly a statement I never would have included, but… And yes, other life-threatening diseases don’t seem to have the same, or as many labels attached to them. Good point. Thank you for reading and taking time to comment.

  9. Oh, it makes me so sad that three of the women who commented on your posts from years back have passed away. I remember seeing their comments from time to time. So sad.

    1. Lindsay, It makes me sad too. This is one reason NCSD feels a bit too celebratory to me. The blinders must not come off even for one day. Thanks for reading and commenting.

  10. Cheerleading and pink rah-rah costumes and dismissive labels get old for those of us who are in health care, too. I’m fortunate to have never been diagnosed with cancer myself, but my sister has been, along with several other members of my family. From what I’ve observed, all the keeping up with the Joneses of corporate health care- everyone has to have the latest and greatest linear accelerator, everyone has to have a Cancer Center, and so on. Instead of so much duplication and waste of resources, we in health care could do a lot more to actually improve people’s lives regardless of where they fall in the health/wellness/cancer spectrum. Starting with recognizing that each individual has their own personal situation, needs, and priorities, and working with them accordingly.

    1. Eileen, I don’t like that either. Some say this day does not exclude those with metastatic disease, but somehow I don’t think a person living with the challenges of mets is the poster person being sought to represent what life post-cancer looks like. I have a problem with the implication made via the site’s statement which says something about how life post-diagnosis can be better too – which it can be I suppose, but… that’s a slippery slope to me. Thanks for reading and commenting.

  11. One thing I do want to say is that I bet many people with mets and those who have passed on would tell us- yes! Celebrate life! It is short! It can be hard! But there is beauty in just being alive. Don’t squander it. Enjoy, appreciate and try to live in the present. If you look at it a bit from that perspective, than celebrating life isn’t such a bad thing. Just another way to look at it.

    1. Lauren, Of course you’re right! I do celebrate life every single day. And all those who’ve died from mets would undoubtedly say what you said in your comment. I just have a few issues – as I wrote about in the post. Thanks for sharing.

  12. I struggle with the word and concept of survivor also. I feel excluded from “the club” because I have had metastatic cancer for a year now. I feel I live on borrowed time and just hope to hell I am on the good side of statistics. All the cancer celebrations upset me now. A constant reminder of being incurable. Most of special days and events are so cure focused and not about living WITH cancer all the time. In Canada we are about to join the us in declaring a national metastatic breast cancer day in October. That’s a start. But considering 30% of us are or become metastatic there should be more. I say we need to celebrate the whole damn continuum – from early detection, cures, to living with mets and dying with dignity. We need money and advocacy and support in all areas.

    1. Patricia, I understand why you struggle with the word and concept. I’m sorry the cancer celebrations are upsetting to you now, but I do understand why they are. The entire spectrum of breast cancer stories needs to be shared. This is starting to happen more, but we still have a long way to go. We can’t be too celebratory on any day because there is so much work to be done. We cannot be satisfied with the way things are or promote the illusion that we have beaten cancer. Thanks for sharing your insights about NCSD. My best to you.

  13. Celebrating can also mean jumping up and down and saying you feel joy for being here. I guess what I’m saying is sometimes you do feel like celebrating in a loud, shout out from the mountaintop way and it is ok . It in no way negates the experiences of the metastatic survivors and those who have passed. If I feel joy, do I take something away from those who are not? Am I in the wrong? I’m being more rhetorical here as there aren’t any easy answers. I understand what you’re saying but I guess I also see that for some, having a day that says ok, I went through this, I don’t know what the future holds but I’m thrilled to be here right now doesn’t have to be a bad thing. My mom passed away from colon cancer before I hit 30 years old. I felt bitter and ripped off for quite a while. I don’t anymore. There’s no right or wrong way to feel but I do know that feelings can change over time.

    1. Lauren, I always go back to my dear friend’s comment that I shared on my post. I hope you’ll re-read it. We can celebrate the victories and of course we can and should celebrate life, but again, we cannot put on the blinders, not even for one day. And no, you are not in the wrong about any of this. You can feel however you wish about this day. So can I. Thanks for your additional comments.

  14. At 66 years of age I clearly remember the day when being diagnosed with cancer was thought to be a death sentence which would be carried out sooner than later. When I was diagnosed 4 years ago, I still had that thought in my head and was comforted by the fact that there were so many “survivors” which this day headlined. However, over time I have begun to wonder what percentage of women really “beat” cancer long term with no recurrence. Rather than “survivors” I think we should be thought of as “Breastketeers” fighting for our lives and a cure, some of us more bravely than others (and that’s okay); helping those with less courage, ad honoring our sisters who lose the battle along the way.

    1. Connie, We have come a long way for sure and yes, more and more people are surviving longer after a diagnosis, but the number of deaths from metastatic breast cancer has not really changed much for decades. Clearly there is much work yet to be done. And “breastketeers” that’s a new one! Thanks for sharing your thoughts.

  15. I don’t celebrate a ridiculous
    metaphoric – holiday.

    I despise labels and happy B/S nonsense relating to Cancer.

    Some may look at as making it a little further in their long range plans for living. I live everyday, does it even have it’s own ribbon? lol
    Love Alli X

  16. I have mixed but mostly negative feelings. I was Stage IV (breast cancer)at diagnosis, so I was transformed from “healthy” to “terminally ill” in one fell swoop. That was, to say the least, a shock. I never had any time to dream of “beating” the cancer.

    A good friend who had had breast cancer and a recurrence talked me through the early months. It was she who observed that “battle” metaphors might not be the most helpful way to look at this disease. She also planted a seed of doubt about “Pink Ribbon Culture” that has continued to grow in the three years since my diagnosis.

    The book Pink Ribbons Inc. crystalized it for me. The celebrations and parties and walks and runs, the pink ribbons slapped on everything, the “survivor” label that, ultimately, does not apply to somewhere around 30% of the people who get breast cancer, all serve to obscure the true state of affairs. There’s a cancer epidemic going on. It’s especially bad in the U.S., with our lax regulation of pollutants and chemicals, our income inequality, our extreme health care injustices, and our rampant individualism. It shifts responsibility for a public health issue to private efforts (including implicitly blaming people who “lose the battle” with cancer.) It’s a political issue. It’s a moral issue. And yet we’re supposed to deal with it by buying pink teddy bears.

    On the other hand, Big Pharma is merely playing by the rules that our system has created. I think their intentions are good. I haven’t met anyone in health care who wants to keep people sick and dying. And, three years out, I’m personally doing well, with little physical impairment. New drugs are being developed. Where there’s life there’s hope.

    We need a different model for research, development, and delivery of treatments. Taxol, which is still one of the most effective chemo agents for a number of cancers, was discovered and developed by all of us working collectively (by the National Cancer Institute, which is a government agency), yet a private drug company, decades later, still earns billions of dollars from selling it. That’s only one example.

    I like the “cancer sojourner” idea. I’ll try that one on for size.

    1. Amy, I have mixed feelings about NCSD too, but ultimately, I stand by the words in my post. You make some excellent points. There’s a lot of work yet to be done. Patting ourselves on the back sort of feels like a waste of time, energy and money to me, but… And yes, cancer sojourner might be a label to think about. Thanks for sharing your insights.

  17. Why do women negate each other’s experiences? We have a tendency to rip each other’s points of views down in a critical way. Why can’t there be acceptance of all feelings and reactions of all people? This is why I turn off blogs sometimes. Nancy your blog is excellent. I just feel sad that women do this. It makes me not want to visit the blog anymore. It’s too upsetting. Sorry.

    1. Lauren, I always try to accept all feelings and viewpoints as valid. My blog is an outlet for expressing my opinions and so that’s what I do. I actually see very few comments (on any post) that are negating anyone else’s opinions. Discussion is always good. Disagreement is fine as long as it’s respectful. Thanks for sharing more thoughts. I hope you keep returning. You’re certainly always welcome.

  18. I personally am thankful for Big Pharma. One of my sons is a research scientist for one of them and works so hard at bringing new drugs on the market. He just finished up research on a new drug for leukemia and lymphoma that will now go into clinical trials. It takes years and millions of dollars to bring a new drug to the public. I have ovarian cancer-just finished 9 cycles of chemo 5 days ago. I don’t feel like a survivor yet-maybe if I live several years cancer-free.

    1. Liz, I’m thankful for the good work that big pharma does as well. You must be so proud of your son’s work. I think it’s the huge profits and steep prices being charged for some of these drugs that concerns many people. Among other things I’m sure – not what your son is doing. I’m glad to hear you finished your chemo cycles. I understand how you don’t quite yet care for the survivor label. Hoping for all the best for you. Thanks for reading and sharing.

    1. Maesprose, It’s a good fact to keep in mind and just one more reason such holidays seem sort of hollow to me. Thanks for reading and commenting.

  19. You have very articulately said what I have been thinking all day. Thank you. As someone living (and trying to live well) with mets, I do often feel like I am an outsider “looking in”. Every argument in this piece is excellent in fact.

    1. Laurie, Thank you for chiming in. Your opinion means a great deal to me, Laurie. And it’s terrible when those with mets feel like outsiders, and it’s unacceptable too.

  20. I just posted on my own blog about this. The word survivor feels so uncomfortable to me and I don’t identify with it. I thought that maybe it’s because this is all still so new and raw for me, I don’t feel like I survived anything yet. I might have gotten my mastectomy, chemo and radiation, but I’m living with the repercussions of these treatments. It doesn’t feel like survival at all.
    Great post. I feel like you were able to put into words some of the things I was not.

    1. Carrie, Uncomfortable, that’s a good way to describe it for me too. I don’t really identify with the survivor label either, but I do use it sometimes. I will be reading your post soon. Thank you for sharing your thoughts.

  21. Couldn’t agree with you more, Nancy. The first time I became aware of this day, it made me feel grumpy, cynical, and, frankly, bored. I think I might have even lampooned it in an old post. And if I haven’t, I might just have to do that this year. What the heck are we ‘celebrating’ anyway? I’m tired of feeling like crap since this whole sleighride began, I’m tired of losing friends, and I’m tired of more friends being diagnosed with stage IV mets. You know what I’ll be doing on the day? Trying to make some headway cleaning out the trash from my art studio that’s accumulated since I was diagnosed, that I haven’t had the wherewithal to get to all these years. And thinking about mets. And about people who haven’t ‘survived.’ xoxo, Kathi

    1. Kathi, I had a feeling you agreed with me on this. Sometimes made up holidays like this make me feel grumpy, cynical and yes, rebellious. I hope you do write a post on it sometime. I am tired of all of those things too, Kathi. I’m thinking about all the non-survivors too. Where’s their day? Thank you for reading and commenting.

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