Honoring Survivorship

Last weekend was Nation Cancer Survivors Day and this weekend was my hometown’s American Cancer Society Relay for Life fundraiser in which my dad and I were the survivor speakers. As I complete my tattoo and celebrate my acceptance to grad school, I find myself deep in thought about survivorship and what life after cancer means.

As a “cancer blogger” I am meeting women all over the world who are blogging about their experiences. They have opened my eyes to a side of breast cancer that is not about pink ribbons and gratefulness, but includes hard looks at the money machine of cancer fundraising and the social acceptability of the term “survivor”. While I may not necessarily agree with the opinions these strong women bloggers’ voice, I am in awe of what they have accomplished in spite of and BECAUSE they got cancer. Even when they are saying they don’t like the term “survivor” or they refuse to be defined by cancer, their cancer experience has lead them to write, be politically active and to teach the rest of us what they have learned.

Sarah, author of the book and blog titled “Being Sarah” recently wrote in her post “Show Me The Money” about the difficulties in celebrating survivorship when she has friends who very well may not make it which casused me to stop and think ….

“So how does someone with stage IV feel about being called a survivor, when they know that breast cancer will probably kill them?…. A friend sends me a link to a short film, the Pink Well Breast Cancer Survivor Dance Tribute, to celebrate National Cancer Survivors Day in Houston, Texas. Gloria Gaynor sings ‘I will survive’ whilst hundreds of women parade in pink wigs and tinsel, in sparkly pink dresses and feather boas, and smile and dance….

Meanwhile, the same friend is off for more scans for her metastatic breast cancer. She is 40 years old. Scans to see if her weekly chemotherapy treatments are having an effect, if she might get a period of stable disease. And for those of you who haven’t experienced intense medical treatment, we’re talking about every week of your life interrupted by at least one medical appointment, hours of sitting round waiting for treatment, then waiting for results from scans, living her life in three month chunks. It means visits to clinics where other patients hopefully ask her when she’s going to end her treatment. It means serious side effects and unexpected hospital stays due to complications with her heart and lungs. Feeling like a prisoner because her doctors say it’s not safe for her to fly right now, so she has to cancel a short break on a retreat, which is just what she could do with right now. And anyway, her treatment is so intense she can only think about taking a few days away at a time.

Do you think she would like a pink wig or a feather boa? Do you think she feels like dancing and celebrating survivorship?”

Another blogger I follow is Katie at Uneasy Pink who really challenges me to think about my definition of survivor in her post “Celebrating Survivorship”:

“I am conflicted about the term survivor. To me, a survivor is a person who has been utterly victimized, who is powerless and suffering at the hands of something or someone that is about as close to pure darkness as exists in the world. War. Holocaust. Childhood abuse. Things that happen completely beyond the control of the victim. Things that alter the path of a life altogether.

There are parallels to cancer here. I didn’t choose it and it did change my life forever. How is changes my life, on the other hand, is in large part up to me.

The big difference, as I see it, is that this “thing” that victimizes us is our own bodies. I question the wisdom of likening our own bodies to the Nazis or the Khmer Rouge. Strange to me too, that this label only applies to cancer. I don’t hear people calling themselves heart disease survivors or flu survivors. What does adopting the survivor label do to our self image? Cancer become a part of who we are, rather than a disease we had (or have).
Rather than honor people with cancer, I think it cheapens the term. After all, “surviving” is a function of having access to good health care. I saw a doctor. Several, actually. I got diagnosed. Then I got treated. How does that compare to a child molested by his priest?

Second thought is, when do we honor the nameless, faceless billions who didn’t survive?”

These womens words hit home with me and make me examine what I mean when I talk about survivorship.  I don’t disagree with Katie saying that she objects to putting herself in the same box as a holocaust survivor – I know there are people out there who have suffered and lived through horrendous things. But I have listened to many cancer survivors downgrade what they have been through to the point of making it seem as if they had a cold for all the acknowledgement they are willing accept. Chemo patients think radiation patients have it worse and radiation patients think that chemo must really suck. And if you have done both PLUS surgery…well, you REALLY get the prize! Younger people have it worse than older people, blahblahblah. I even had one woman tell me that she really didn’t think she deserved to be called a survivor because she only had a lump. How big was her lump? The size of a walnut. That is huge! It is as if there is a grading system to having had cancer, and it seems that some cancers are worse (or BETTER!) than others. Let me tell you this from someone who had cancer and had a parent with cancer ….if someone tells you that you , or your loved ones, have cancer,  your world changes FOREVER. If you choose to take the bull by the horns, fight it and are a better person in the end for it….you are a SURVIVOR.

For most of us, it is easier to tell other people they are deserving than to recognition for what we have been through. I spend so much of my time speaking to women and writing about the inspirational parts of what I have learned that sometimes I forget how badly it sucked. Today, as I walked past cheering people on the Survivors Lap at Relay, I teared up because these people were honoring the difficult road I had been on. Many of them have no clue – they are only imagining how difficult it can be. It is all of that and more….worse than any nightmare, and yet not so bad sometimes. It is worthy of recognition however you label it.

As immersed as I am in breast cancer culture, sometimes I forget why. When I go to the doctor because it is time for MY check up I am abruptly reminded that I do what I do because cancer happened to ME.  It is disorienting since you would THINK that I think about it all  the time.  In some ways I do…but I have put it into a box that doesn’t allow for much honoring – only coping and moving on.  Sometimes we need to remind ourselves of what we have done in order to see all of who we are.  And we cannot truly and deeply honor others until we do the hard work of honoring ourselves.

Claiming the title survivor is no different than the multitudes of ways that warriors in all cultures have keep track of their victories. And proclaiming kinship to others who have fought the same battle is  the  brotherhood of the warrior that has always existed to honor and respect each fighter. It is not just about who wins, it is about who joins the battle. Not everyone does.

In the speech I gave at Relay for Life I said:

“A cancer diagnosis is traumatic, but it is not the interesting part of our story. The interesting part is how any of us chose to live after it.
Survivorship is rising above and beyond what happened to us. It is about looking at where we were and where we are now and choosing to move beyond both. Though it may seem unjust that we are presented with the challenges we have faced, we are being tested and given an opportunity to rise above. How far we rise depends on each of us.
We can choose to let the disease take our hold of our spirit, or we can become bigger than we ever knew was possible. Survivorship is not about beating or outliving cancer – it is about how we choose to live our lives after being told that we could die.
Whether our remaining time here is 6 days or 60 years, this is our opportunity to clarify what is important to us, and to choose to live with greater presence and commitment to what is worthy of our precious selves and time. We cannot return to the way things were. We cannot waste our time wishing things were otherwise. In order to survive we must re-create our reality and choose to step into a new way of being.”

Cancer is not who I am. But it certainly has cleared the way for me to become who I am. In fighting for my life I found a stronger, deeper, more committed person. I discovered a toughness I did not know I had and reaffirmed a faith in Spirit that I thought I had lost. I uncovered lost dreams and lost friends. Because I was scared and did what I needed to do anyhow, I found out I can accomplish anything.  And now I also have an awesome new tattoo and am about to start grad school to become a better writer.  No, I am not cancer. I am a survivor because I took the lemons and made some REALLY AWESOME lemonade. That is what survivorship is.

(for further thoughts on survivorship please read my post Victim or Survivor)

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10 thoughts on “Honoring Survivorship

  1. I think what I’m mainly hearing from this post is that the meaning of “survivorship” is different for all of us, and going through the cancer experience drives us to certain actions, that perhaps we would never have imagined possible had we not gone through everything a cancer diagnosis throws at us. Indeed the experiences, emotions, and confrontations of a cancer diagnosis are profound and life-altering both physically and emotionally. I totally get that.

    I think the points that both Being Sarah and Uneasy Pink are trying to make is that there cannot be a one-size-fits-all approach to the concept of “survivorship”, and for some people, particularly those dealing with metastatic disease (myself included), the idea that we can somehow move on or celebrate life after cancer, is obviously a bitter pill to swallow (apologies for the bad pun). For me personally, this is where the concept of celebrating survivorship in a collective public format, like a National Cancer Survivors Day ™, feels a tad self-indulgent. What about those who are not going to survive, and who know it? Does the very notion of a positive, feel-good, celebratory concept of a survivor imply that those that don’t survive have done something wrong, rather than simply having unlucky molecular cell biology?

    I just think that the cancer culture needs to pay more attention to the people who don’t make it. Not by more memorials and moments of silence, but In practical ways, like gearing more research into metastatic disease, realizing that for some cancers early detection is not a panacea, integrating full support for those living with Stage IV disease and providing full support for end-of-life care etc. But as a culture we’re quite busy just celebrating survivorship and not paying enough attention or indeed funding to these realities. The thing is though, it’s only by engaging members of the so-called “survivor” community, are we ever going to be able to get traction and meaningful change on any of these issues. Trouble is, many survivors don’t want to hear it, because they’ve moved on and put cancer behind them. They’ve survived.

    Here’s a post I wrote recently that speaks to many of these issues: http://cancerculturenow.blogspot.com/2011/05/mbc-needs-you.html

    1. Anna- I totally agree with you and I think the perspectives from both uneasypink and beingsarah are interesting and important to think about. We DO need to move past our diagnosis and on to living life. But I also know that my cousin who died at age 40 of bc and other stage 4 women I know would not begrudge any of us our right to celebrate our survivorship– as long as we are actively taking advantage of our second chance. In my volunteer work I talk to many cancer survivors of all types and I am surprised at how many have put cancer behind them but are most definitely not “over it”. I think it is our responsibility to those who have died to not gloss over what has happened to us and how it has affected it. Women just “getting on with life” has resulted in profound silence about the emotional impact of cancer, abuse and other tragic events. Awareness and acknowledgement equals healing and healing creates room for action. And I believe we MUST act. Thank you for keeping the conversation going– I am learning so much from you ladies and I really appreciate hearing your opinions!!!

      1. Thanks for your thoughtful reply. I certainly don’t begrudge anybody celebrating their individual survivorship, but what I object to is an entire culture structured around this concept when it’s not everybody’s truth. That’s where things get a bit clouded and irritating for me. Important discussion nonetheless, and thanks for hearing me out.

      2. Gotcha! So glad to keep the conversation going! Did a quick little edit to the post so that I was clear that I appreciate the dialouge and the brain stimulation!!

    1. Thanks for reading Nancy! I totally agree that there does seem to be a “proper” type of survivor….and I am not very good at fitting in boxes. Actually that is why I do the activism/advocacy thing – because I am NOT the norm or what you would expect. I think it is good for all of us to continually challenge our expectations and assumptions. I am excited to be part of a thinking group….I really don’t make a very good pink sheep!

  2. Thanks for mentioning me! I’m glad that I get people thinking a little because that’s certainly what the blogosphere does for me.

    Katie

  3. Right on Robyn! You rock lady! You and I share very similar feelings on what it feels like to be a “survivor”. I just now found this post and I certainly hope your news was good. I love your blog by the way and you have inspired me to write and perhaps even take a class. Thank you!
    Many blessings my friend, one day we will meet in person.
    XO!
    Laura

    1. Thanks Laura! I am sure we will get to meet…the world is already so small that we share friends!!! I am glad you are writing….i am LOOOVING it and loving school…thanks for the encouragement to go back – you were right – LEARNING IS AWESOME!! hope you are feeling better today — you are on the home stretch, superhero!!!

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