Boycotting National Cancer Survivor’s Day

Posted on: June 2nd, 2016 by
26

National Cancer Survivors Day is on Sunday, June 5.

And I won’t be celebrating.

Sorry to sound like a bitter ingrate, but I take issue with a day that celebrates cancer “survivors” and leaves those with metastatic cancer in the dust of victory.

In fact, I take issue with the word, “survivor.” According to Dictionary.com, the word “survive” means: “to endure or live through (an affliction, adversity, misery, etc.)” and “to get along or remain healthy, happy, and unaffected in spite of some occurrence.”

Does this definition fit those with metastatic cancer? Most certainly not. For those with mets, cancer is more than just an adversity to be overcome. And, let’s face it, people with this disease don’t necessarily remain “healthy, happy, and unaffected.”

The National Cancer Survivors Day website has a page called “Who is a Cancer Survivor?” It lists several criteria that “defines” who makes the cut as a survivor. Here’s one gem from the website:

“If you’re living with cancer as a chronic disease – you’re a survivor.”

WTF?

Maybe I missed something here, but since when is metastatic cancer a chronic disease? Such deceptive, veiled language pretties up the ugliness that is cancer. Here’s another definition of “survivor”: “If you’re currently in active treatment for cancer – you’re a survivor.” I think the people who put the website together just threw this in in a feeble attempt to cover those with metastatic disease.

And here’s my favorite: “If you’ve beaten cancer and been declared cancer-free – you’re a survivor.” Ah, the old tried-and-true favorite: the battle metaphor stating that if one is NED, they have won the battle against cancer. Nobody I know has “beaten” cancer, yet the battle metaphor lives on.

Let’s be real: These feeble definitions of cancer survivorship also don’t fit for those people who lived through cancer and are currently NED (no evidence of disease), the so-called “survivors,” people for whom the national celebration is really aimed at.

People like me.

***

I’m under the survivorship umbrella, but it’s a raging shit storm out there.

Don’t get me wrong: I’m glad I am NED, but the jury is still out on whether I survived cancer according to the aforementioned National Cancer Survivors Day criteria. Regarding cancer survivorship, a hip hip hooray feeling eludes me. The bridge toward survivorship and greener pastures is rickety.

Here’s a synopsis of my post-cancer life. Most of the time, I live in a state of gratitude. I paint and write and read. And take nature walks, appreciating all that nature has to offer.

But while I’m grateful to be alive, I’m not grateful I had cancer.

I will never be grateful to have had cancer.

Cancer is ugly and devastating. To me, survivorship is akin to living under the Sword of Damocles. It’s like being placed in Edgar Allen Poe’s story of terror “The Pit and the Pendulum,” where the narrator finds himself facing a pit where he will fall into a never ending abyss, as the walls literally close in on him bringing him closer and closer to the pit.

I can only speak from my own experience.

Survivorship has been exceedingly difficult for me. Between the panic caused by oncology appointments and intense scanxiety that only those in the cancer world can understand to PTSD to fatigue to chemobrain to cancer paranoia — survivorship pretty much sucks.

Yet, despite all this, I know how lucky I am to have survived. I don’t need National Cancer Survivors Day to remind me that I’ve beaten cancer.

Truth is, cancer has beaten me up pretty badly.

Path

Do you like the word “survivor”? If so, do you consider yourself a cancer survivor?

If so, how has your survivorship experience been?


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26 Responses to Boycotting National Cancer Survivor’s Day

  1. Karrie had this to say about that:

    I hate cancer!!

  2. brenda moore had this to say about that:

    Hey Beth, I have never posted on your blog, usually just on FB. I have a battle between cancer being the best thing that happened to me (leaving my abusive husband and my attitude and pace on life – eh, it will all work out and if it doesn’t, who cares) to being the worst thing. The paranoia of every ache and pain, literally not being able to or terrified to plan for the future, the intense sorrow of not seeing my boys grow up, being mad at celebrities that die at 90, utter fatigue, having to support myself and when I can’t…… not sure. I’m not sure how to reconcile this. Probably going to be an issue at therapy. Do I think I am a survivor? I’ll let you know if I don’t die from cancer.

    • Beth L. Gainer had this to say about that:

      Brenda, first of all, I’m glad you posted on this blog. Welcome! I so appreciate your FB comments, as well. Regarding the inner battle, I totally get it. As you know, cancer hastened the end of a terrible marriage for me. In many ways, my post-cancer life is richer than my pre-cancer one. In many ways, I am suffering more now.

      It’s been an issue during my therapy sessions. Your last sentence says it better than I ever could. One is only a “survivor” if one doesn’t die of the disease.

  3. Kandas had this to say about that:

    The word survivor does make me uncomfortable. But, I haven’t found the RIGHT word.

    • Beth L. Gainer had this to say about that:

      Kandas,

      I haven’t found the right word either. I have no idea what to call myself. I used to use the word “thriver,” but that word is BS to me because a) it connotes that cancer was a positive experience and b) I’m not sure if I’m thriving.

      If you come up with a good word, please let me know. Thank you for your comment.

  4. Clara had this to say about that:

    Perhaps use of the word “survivor” helps to create a more positive environment. Cancer already sucks enough- why not use some vocabulary here and there that doesn’t make us want to just lay in bed awaiting our inevitable demise. Is it sugar-coating? Of course. But if we want people to know about the other parts- the ugly, paranoia-filled reality, then we have to share our experiences. Being positive has helped me. But sometimes I share the scary bits with people so they are a little more aware of the full scope of being a “survivor”.
    Off now….to search for a better word to describe my state of being. Intellectual exercises are super hard to focus on…..even now, and I’m almost 9 years out (maybe 10).

    • Beth L. Gainer had this to say about that:

      Clara, yes, sometimes positivity is warranted, and I have no problems with those who choose the word “survivor.” I still use the word to describe myself to others in the non-cancer world, but I know that word falls too short for my liking.

      Good for you for sharing the scary parts of cancer with others. I believe that others need to know that cancer is no walk in the park.

      If you find a better word for it, please let me know. I’m 15 years out from chemo, and my brain still isn’t the same.

  5. Rebecca had this to say about that:

    Well said, Beth! I completely agree. Words matter a lot, and more often than not, they create separations in cancerland. It feels as if we lived in a sub-community with different political views, even though we are all in this together type-of-situation. The more I became aware of the disease, the less I liked the word ‘survivor’. I think many of us wish we can push cancer away. Some of the words used in cancerland may create some form of ‘optical illusion’ for lack of a better word. I mean, it’s fine that some patients love celebrating being alive, and of course I am still grateful to be here, but the reason why it feels uncomfortable to me is because we leave others out. And what if I become stage 4? I would feel like I no longer matter since there’s no cure for me. For no one, really! So no, I don’t use the word ‘survivor’ to describe myself. I call myself a cancer patient because that’s what we are. It never ends for us. For me survivorship is awful because cancer is a never-ending event. That makes life difficult. But we keep going. One day at a time.

    Thank you for being honest about this topic. You’re not alone. xoxo

    • Beth L. Gainer had this to say about that:

      Hi Rebecca,

      You describe the cancer community so well; there are various sub-communities, as you call them, and sometimes it feels like even though we are all in this together, we are divided. But I guess that’s the nature of people. It’s difficult to get two people to agree, let alone people in an entire community.

      I agree: it’s great to celebrate being alive. But leaving people out upsets me.

      Your word “cancer patient” sounds pretty good. Yes, survivorship is not as easy as some believe it to be.

      Thank you for your insightful comment.

  6. Renate had this to say about that:

    I agree with all you have said, I read more of this stuff than I comment, I have been battling since 2011 and I hate the survivor word although I know for some it helps the healing process, for me I never say I survived which I didn’t but instead I say “not a survivor, however I do survive on a daily basis” I too will know if I survived if I do not die of cancer! your page was right on for me! Thank you and I wish everyone battling cancer some peace and comfort in their journey to living life!

    • Beth L. Gainer had this to say about that:

      Renate,

      Thank you for your great comment. All we can do is survive day to day; I like your response to others about surviving daily. Whatever response works for you is fine.

      Thank you for your kind words, and I appreciate your readership.

  7. Diane hamel had this to say about that:

    My daughter is in her 3ed year of her survivorship.her preferred term is “lifer” She was diagnosed with triple negative inflammatory breast cancer when her baby was 5 months old. As I watch my grandchild grow it is a constant reminder of the fast passage of time.

    • Beth L. Gainer had this to say about that:

      “Lifer” is an interesting word that makes sense.

      I’m so sorry that your daughter got cancer. I’m hoping you find solace in your grandchild. Children do grow up so fast; my own daughter reminds me of the passage of time.

      Thank you for reading and commenting.

  8. Jeannie had this to say about that:

    It’s been rough. Lymphedema in both arms is one thing but the emotional toll was something I did not expect and for which I was not forewarned.

    • Beth L. Gainer had this to say about that:

      Hi Jeannie, I’m sorry survivorship has been so rough on you. I’ve had lymphedema, and it’s terrible. Nobody warned me of the emotional toll of cancer either.

      I think cancer survivorship is something we patients need to be prepared more for. Not that anything can prepare us for the minefield that is cancer survivorship.

      Thank you for your comment.

  9. Nancy's Point had this to say about that:

    Hi Beth,
    Well said. Admittedly, I still use the term survivor, but only when I have to and can’t think of a better choice. As for National Cancer Survivors Day, well, count me out. Not a fan. Feels patronizing and sounds over-triumphant, if that makes sense. Thanks for the post, Beth.

    • Beth L. Gainer had this to say about that:

      Nancy,

      I still use the word “survivor,” too. I totally understand what you are saying; the day is patronizing and, frankly, ridiculous.

      Thank you for your comment.

  10. Lisa DeFerrari had this to say about that:

    So well said, Beth. I struggle with the notion of how a “survivors day” actually helps anyone who has been affected by cancer. What we really need is more research directed at getting the answers that will make a difference for patients.

    • Beth L. Gainer had this to say about that:

      Lisa,

      You said it right! Let’s draw attention to getting research funded. National Cancer Survivors Day does nothing to help anyone.

      Thanks for your comment.

  11. Kathi had this to say about that:

    Meh.

  12. Eileen@womaninthehat had this to say about that:

    In speaking from your own experience, you have articulated mine so well. Yes, yes, yes to everything you said.

    • Beth L. Gainer had this to say about that:

      Hi Eileen,

      I hope you are well. Thank you for your kind words. I know there are people who don’t agree with me, and that’s fine, but I just don’t think we need a day to be acknowledged.

  13. Kioi had this to say about that:

    whoever coined this word “Cancer Survivor”, does not exactly cover it in full. It takes the utmost will and inner power of an individual to overcome this challenge indeed.

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