Words matter (Part 2)

The second part

I’ve been trying to figure out how I can spend a lot of time writing about cancer without having to refer to people as survivors. For the purpose of simplicity, I’m just going to refer to them as People Affected by Cancer (PAC). Then I can specify if they are recurrent, going through treatment, past treatment, or dead.

Oh, and if you’re wondering what this whole “Part 2” thing is about, you should click the link below.

Previously.

Another moment spent on the NCSD and the word survivor

Before I move forward, I want to go back to the National Cancer Survivors Day. The website states that NCSD is a symbolic event to demonstrate that life after a cancer diagnosis can be meaningful and productive. In a press release on the National Cancer Survivors Day Foundation (the non-profit organization that oversees the day), there is more talk about people “thriving” after cancer and that some people even find life more rewarding after facing cancer. Cancer — it’s fertilizer for your life.

I started doing some research into NCSD and found the planning package for this year. One of the suggestions was to have a “Cancer into the future” theme with Costumed Star Trekkies, discussion of treatment advances, space age decor, futuristic music. Now that would have been a conference to attend.

The NCSD foundation defines a survivor as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life. That’s kind of like saying everyone who isn’t dead is alive.

Just because the powers that be — and the powers that be in this case are the media, cancer “awareness” organizations (more on that at another time), support organizations, etc. — claim this term to be inclusive, doesn’t mean it is.

I want to make something clear. I don’t think there are bad intentions here, just that there seems to be this collective attempt to convince us that the cancer experience is a boat ride through Venice instead of a terribly confusing and bizarre ride through a carnival house of horrors. Through various systems, this is done so effectively that even other PACs are spreading this gospel.

The language and rhetoric of cancer holds us emotionally hostage.

What happened after the conference

As I mentioned yesterday, I had a lengthy conversation with one of the panelists and her colleague. But I also met a PhD student who is doing research into the culture of metastatic cancer — the conversations, behaviours, and interactions around metastatic disease, as she explained in a recent email. It was exciting to meet someone who is curious about the culture of disease, specifically the culture of the disease situation I am in. (Sort of. I am technically not considered metastatic, just recurrent, the difference of which I’ll explain another time.) I wanted to high five her and buy her a beer. She didn’t even recoil in horror when I looked around to make sure no one could hear me and hissed, They didn’t even have real cancer survivors on the panel.

A moment to address my previous statement. Things like this will probably come up a lot. I am going to sound like a dick. And it will be surprising to some because this is not the way PAC are supposed to support one another. In fact, I am a little nervous about my next support group meeting because I know a lot of people there read this and I know I could very easily be hurting some of them by saying these things. But saying the things that are going through my head — and the heads of other PACs, and I know these things are because I’ve had these conversations — is more important right now than being diplomatic. And the truth is, I can’t put being attacked by a house cat on the same level as being attacked by a mountain lion. Yes, all cancer is bad, but pretending it is all equally bad is a disservice both to those who may not have struggled as much with their experience (and may wonder why they weren’t profoundly affected as they’re told they should be) and those who struggle so much, living in pain and without hope (and are probably told that keeping optimistic and hopeful will help them fight their cancer).

What happened after the conference when I went to my psychiatrist

I recently posted about an appointment with my psychiatrist. I had reached this point in psychotherapy where I felt like he was getting to know about me, but still did not know me. I can’t really explain it but I feel like sometimes he looked confused by me. Like he was trying to puzzle out how all the pieces fit together. I felt the same way about him. I mean, I know that he works mainly with oncology and palliative care patients. But, like, what’s his deal?

I think we both sort of figured out each others deals last week, and it turns out we’re kindred spirits, at least in one regard.

I sat down and looked at him silently for about 10 seconds (it’s eery how non-expectant psychiatrists look when things like that happen) and then launched into my frustrations with the conference, with the lack of answers, with the feeling that no one wants to talk about the illness or dying part of cancer, that we’re just expected to be hopeful and when we say that we’re not, people look at us like we just signed our own death certificates, and how even though my oncologist is amazing and respectful and listens to me, I still have problems getting her to answer the questions about what my options will be if I recur less than six months out from finishing chemo or what they will be if I recur more than six months out from finishing chemo — both scenarios being more likely than the third, that I never recur again, which both of us know — and that I just want my questions answered, I don’t want to be told that I don’t need to worry about these things now. Because I do worry about these things now.

And it turned into a discussion. Dr. M. reflected the same feelings of frustration and anger back to me. His head was nodding as I was talking, and I could tell from his eyes that now he was the one who wanted to high five me, just like I wanted to high five Alyson the PhD candidate after the panel discussion. All I could think was, yes, he gets it and he gets me.

Then he offered me, as he put it, a unique opportunity. He told me he is sitting on the ethics committee at Mount Sinai and that he would like it — if I was willing and wanted to — if I would put forth some policy suggestions based on my experiences as a patient, and what I feel is lacking and what I feel is needed.

We also talked about a conversation I had with Dr. Martens and Jennifer Turner at the conference. She and I had been discussing the reluctance on the part of health care teams to discuss these “what happens if” questions. She put forward this take: Doctors, especially oncologists, don’t want to discuss the “what ifs” because they feel like they are failing their patients and they so desperately do not want to fail us. Jennifer told me about a colleague who couldn’t even tell a dying patient that she was dying when she asked. He kept saying there was still hope, she was young, she could still fight. When the patient expressed confusion about the doctor’s answer to her very simple question — Am I dying? — Jennifer returned with the patient to his office. She told him that if the patient was brave enough to ask the question, he should be brave enough to answer. He still couldn’t do it. He didn’t want to give up. He didn’t want to fail.

When I discussed this with Dr. M, he made the observation that when doctors don’t answer our answerable questions directly because they don’t want to feel like they are failing us, because they want to maintain hope for us even if we are hopeless, they simply fail us in other ways.

It’s important to remember in all of these that everyone involved in this system is flawed. The system will never be perfect because humans aren’t perfect. We have to demand change, we have to express our anger and frustration, but we have to do it respectfully.

Coming up in Part 3

I talk about the unfunny joke that is the notion of cancer prevention and maybe throw some darts at this thing we call awareness.

A goodbye

Megan Newt was a 29-year-old going through treatment for recurrent melanoma. She was an incredible writer who wrote about her situation without dancing around the seriousness of it. She had a frankness about her illness that I admired. She died and a lot of people are going to miss her.

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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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4 Responses to Words matter (Part 2)

  1. Nancy says:

    Excellent writing as usual.

  2. Terri says:

    With great love and great courage. Not courage in the “you are so courageous for having cancer” way, but in the “you say the things so many can’t quite articulate” way.

  3. Part 1 and 2: beautifully written indeed and how I have longed for, hoped for, dreamed of someone (other than me) articulating the stupidity and insensitivity and deception of that word “Survivor” (and this is with all due respect to those who choose that description and mind-set – it’s not to dis your feelings, but rather to acknowledge that how others view lives with cancer should be equally acknowledged, and all that stoked up this is the best thing that ever happened to me be tempered)
    For me, also ironic that we ‘re urged (in conventional press, across social media platforms) to make end of life discussions dinner table normal – when those who WANT to talk about it with (presumably) more knowledgeable health care professionals are shut down.
    I feel I am one of the most positive hopeful upbeat people and yet I cringe and flinch with all the rah rah sis boom bah that we’re supposed to feel while often facing diminishing returns.
    Thanks for both posts (and giving me an opportunity to rant!)
    Kathy
    ps: I am one of those with ‘good’ cancer and also appreciate your astute observation that the impact can be very different, as are the short and long term reactions.

  4. dieta says:

    I was diagnosed on May 13, 2010 with Burkitts Lymphoma. Very rare I was told and very very agressive. Had major surgery May 5th where 12″ of my colon and half my bladder was removed. This is how we found it. I was started on a Hyper CVAD regimen which was very agressive. Cyteribine, vincristine, methatrexate, you name it they gave it to me, every 22 days for 8 treatments, thought I was gonna die by the last one. Long story short, I am now in full remission but am dealing with terrible neuropathy in my feet. Had a little before my cancer froma bad back, had surgery 3 years ago for that, all is fine there. I have tried amiltriptiline (SP) and gabapentin (SP), those 2 made feel like crap so I stopped. I have been advised to try Vitamin B Complex which I now have started. Just asking if anyone has a similar story and what works for you. I can live with it because I look at like this, I am here and I am going to enjoy life no matter what.

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