Words matter (Part 1)

Introduction

I’ve been thinking about this post all week, wanting to sit down and write it, but work and appointments and Raconteurs and other projects have kept me from getting to it. But I’ve run full-on into my day 10 post-chemo nadir (the same tanking of the immune system that turned a tiny cut into an infection last time) and my throat is sore and my ears feel funny so I’m just going to stop everything for a moment and finally put metaphorical pen to paper because I don’t think I have the energy or focus to do anything else.

The first thing you need to know is that I went to a national Survivorship Day conference on Monday. The second thing you need to know is that I hate the term “survivor.”

The second thing

“Survivorship” is perhaps the most divisive concept in the cancer community. It’s a term that is grasped tightly by those who have finished treatment and are thrown back in the world deemed “cured.” It is the life preserver you cling on to when you are bobbing in the middle of an ocean of uncertainty.

It is also a badge of honour, a medal awarded after finishing a grueling race. It is held up to the light so everyone can see how shiny it is, how hard you worked, how deserving you are of recognition.

And it’s bullshit.

Survivorship is a term and concept for people who are cured. It’s a way to talk about the cancer experience while sweeping the messy topic of death and incurable illness under the rug. It’s a great thing to aspire to, until it is no longer an achievement you can ever reach.

In which I admit the first of several nasty thoughts

When survivorship and survivors are feted in the cancer community, I start to begrudge the people being celebrated. Where’s my fucking party? I’m still going through this and I will be going through this every day of my life. Recurrent cancer patients rarely get cures. They get treatment-free intervals. My last treatment-free interval was 10 1/2 months.

The first thing

I almost didn’t go to the survivorship day. I don’t identify as a survivor and nowhere on the agenda was there a space to talk about terminal or incurable patients. I know several other recurrent cancer patients who didn’t go for that very reason.

Some of it was great. Alex Jadad was absolutely fantastic as…host? MC? Whatever it is you call the person who introduces everyone at a conference. Bob Bell was inspiring and awesome and I wanted to applaud him and I wished I’d remembered a pen and notebook because I couldn’t type notes from his talk into my iPhone fast enough. The University Health Network is home to some amazing people.

I was totally conflicted by the keynote speaker. Laura Adams started strong. She spoke about medical error and the need for patient-centered health care. She was funny. The best thing that ever happened for my appearance was cancer, she said. Everyone kept telling me how great I looked. I’m going to put this out there for everyone — what you think a cancer patient looks like is not a necessarily accurate image. Those of you who have met me know that I don’t look sick. Usually.

Then Adams started talking about finding the “silver linings” of cancer. She spoke from the perspective of a cancer survivor. Note that word. She spoke about how having cancer gives you the opportunity to “step off the world” for awhile, to take a break from reality. She said cancer made her reevaluate her life, her diet, her exercise, her stress levels. She said, I believe that if we take control of our lives, of our diets, if we exercise and make space in our lives for ourselves and our families, if we aspire to healthy living, no one needs to die of cancer. We can die healthy. She said if she had to have cancer all over again, she would. She had breast cancer. Her treatment was a mastectomy.

In which I reveal the second nasty thought

I feel like some people get the good cancers. Adams had a good cancer. The other panelist playing the role of cancer survivor that day had thyroid cancer. He had a good cancer. Those people should hardly be spouting platitudes about cancer. They had cancers that are easy to survive. It is hard for me to admit this. That I believe that there is such a thing as “good” cancer. It makes me sound like an asshole.

Back to the first thing

The panel discussion was meant to provide the audience with the opportunity to ask questions. I asked the first one. It was difficult to put into words because there is no language that deals with the situation I was trying to describe. Basically what I was trying to say was, Hey, what about the rest of us? What about those of us who won’t get better? Who will live years, maybe decades going through treatment to keep their disease at bay? What do you have to say to us? Why aren’t you talking about us?

One of the panelists, Chandra Martens*, said that she loathes the term survivorship because it cuts so many people out of the conversation. People shifted uncomfortably. Adams said it wasn’t just about surviving cancer, it was about thriving with cancer.

In which I reveal the third nasty thought

The term “thrivership” was offered up as an alternative to the word “survivorship” as a more inclusive, holistic view of the cancer experience. That having cancer can be about thriving personally, taking stock of your life, excelling in self-care and awareness. I see it as another way of glossing over the most central part of the cancer experience — cancer kills. That’s the whole reason we try to raise awareness and funds and rally for research. We don’t do this because cancer is this profound life experience like going to India and coming back with a whole new outlook on life and humanity. Cancer is not a fucking vacation. It is not a spiritual retreat where we do yoga and eat raw vegan food. It is a disease that wrecks bodies, that cuts lives short. I am not thriving with cancer. I am fast-tracking through an existential crisis and struggling with treatment that essentially gets as close to killing the host as it can, just to keep the parasite in check. I’m pretty sure that cancer is a failure to thrive, and I’d ask not to be patronized by being told otherwise. As far as my personal development goes, who’s to say I’m thriving more through cancer than I would otherwise?

Back to the first thing for the final time

A woman behind me asked the second question. I was diagnosed with breast cancer a year ago, she said, and I’m doing well now but I am worried about recurrence and I want to talk about it but no one wants to discuss the possibility, my doctors tell me we don’t need to worry about it right now. The comedian answered. He started talking about how the best time to talk about the fear of recurrence and dying is when it isn’t an immediate threat, that she needs to gather her friends and family around her and tell them that she needs to talk about her fears. I wondered if he was at the same conference I was at. Did he not listen to the question? She’s not asking a question about how to talk to her family, I interjected (that’s the polite way to say interrupted, right?), she wants advice on talking to her health care team so that they will answer her questions. This isn’t about her fears, this is about knowing what her options are if the cancer returns. The comedian continued to answer the question. He kept telling her to talk to her family about her fears and ask them for support. Not a single medical expert — not Martens, a radiation oncologist, not Adams, a nurse, not Brian Goldman**, a doctor I respect very much, not Christy Brissette, a dietician who works with cancer patients — weighed in on how to get your doctor to talk about a future in which you might get sick again.***

In which I reveal my last nasty thought of the day

I was disappointed by the experts on the panel. How could they let that question, so clearly directed towards them, go by answered by someone who was only interested in answering the question he wanted to hear, not the question he heard. Someone who wasn’t a health professional when everyone else on the panel was far more suited to answer the question. I have deep admiration for all the people sitting on the panel — most of whom I have been aware of for some time — and it was so disheartening that they left that question unanswered. The topic is uncomfortable but it needs to be talked about. I’ve thought this for awhile. The conference simply confirmed that.

The second thing

I see the rhetoric of survivorship as the Disneyfication of cancer. I see it as empowering to a few, alienating to many. It is a scrubbed and sanitized version of disease. It’s Yippee kai-yay, Mr. Falcon.

Coming up in Part 2

How my frustration and anger about what happened and didn’t happen at the conference led to one of the best internet conversations I’ve ever had, a breakthrough with my therapist, and the opportunity to present policy suggestions to the ethics committee at Mount Sinai Hospital.

*I had a fantastic conversation with Dr. Martens and her colleague, Jennifer Turner, after the panel discussion. It was validating and so interesting. It was fortuitous for me to meet them.

**If you haven’t heard Dr. Goldman’s TEDxToronto talk, go listen to it.

***As mentioned above, I had amazing conversations after the panel, some about the very question that wasn’t answered. Unfortunately, the other 80 people in the room didn’t get to hear the things I heard.

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About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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8 Responses to Words matter (Part 1)

  1. Tara says:

    and that is *exactly* why I started my Malignant Militia movement cos I had THOSE EXACT THOUGHTS when I saw people at Relay for Life and other such portrayals of cancer; it’s utter bullshit. It’s like the media’s way to skirt around the issue of the complete failure of the cancer establishment to eradicate this plague from our world; about how more and more people (especially under 40) are getting cancer and dying from it; about how it’s NOT preventable (except for perhaps, smoking induced lung cancer; but if you’re going to inhale smoke, it’s probably not going to be good for you anyway :p ).
    I wish I’d gone to that conference now! 😉

  2. Alicia says:

    It goes beyond the media though. Every cancer patient, every supporter, every health care team member who perpetuates this idea of cancer being some kind of gift is complicit in in supporting this portrayal. And honestly, I’m not really that fussed about the fact that cancer hasn’t been eradicated — it is such a complicated process and it’s not one or two or a dozen diseases, it is hundreds of thousands of diseases. Even in one type of cancer, like breast or ovarian, you have thousands of subsets. Remember that 30 years ago, a lot more people died from the disease. Now a lot more people like myself are living with it for years. And that’s where the conversation fails. It’s not that we aren’t talking about how many people are getting cancer; it’s that we aren’t talking about how it affects the daily lives of the people living with the disease, we aren’t talking about the fact that dialogues are breaking down because as a society — because I don’t see this just as a failing of our health care teams, though the conversation needs to start with them — we are completely unable to talk about death and illness. Anyway, I have much more to say on this but I’ll save it for future blog posts.

  3. Sarah says:

    Thank you for writing this post. It reminded me of a lot of thoughts I had after seeing Pink Ribbons, Inc. I’m looking forward to reading more of your thoughts as you get them down here.

  4. barismumyakmaz says:

    Your words are very powerful. I find the “good” cancer distinction very interesting. I will credit you as inventor of the term.

    I see your point with survivorship too. But the term means so different than it used to be. The National Brain Tumor Society Guidebook (US apparently) says that the term “survivor” was used for family members whose beloved ones died of cancer back in 60s, then it switched to patients who lived for at least five years after their diagnosis, and now survivor is an individual diagnosed with cancer, from the moment of discovery and the balance of life.

    I see myself as a survivor. But these fancy terms or words don’t really matter. What matters is how we value life and find our purpose in it.

  5. Pingback: Words matter (Part 2) | Second Verse

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  7. redspeckled says:

    I call myself an ‘ex-cancer patient’. I’ve always considered myself one who had a good cancer. It was Hodgkin’s Lymphoma, and I was 20 at the time. It was more of an inconvenience than a life threatening condition. Not all cancers are equal, and it’s really hard to help people realize that. You sound like a lot of fun to hang out with, and perhaps one day, we will find ourselves sitting side by side at a ‘survive and thrive’ conference, rolling our eyes together.

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