This is another “cancer language sucks” post. And yes, it is about the celebrity stories and wacky headlines bombarding the entertainment news sections: Rita Wilson and her 100% healthy and cancer free—which it seems she actually did say; Former President Carter’s cancer free status, though I think that was said about him, not sure what he actually said; and the completely baffling story of Lorna Luft and her seven ribs. I admit, I gave up reading pieces about her, could not figure out the details and her clichéd quotes, her need to adhere to the culturally approved cancer script, just sickened me and I gave up.
I’ve written about my rejection of the terms like survivor and warrior (here and here, that’s two in my mind, too lazy to look for more), and no doubt will again. I’ve especially written about my confusion about remission. I cannot recall exactly what phrases any of my oncologists have ever said to me. While never grim, they were always cautious. I do not remember anyone using NED with me; I picked that up via social media. I’m sure no one ever said “cured” or “cancer free”. The vibe was always: “we don’t see any cancer, and your chances are good, but let’s keep an eye on it all”. I was told from the very first meeting with the oncologist the odds of my kind of cancer (HER2+) and stage coming back. I was always aware it could go other places, and was told how lucky I was the cancer had not reached the chest wall—tho’ it almost had reached it.
But the general population just cannot understand all of that. I’m learning some cancer patients don’t understand it fully either, and nor do they try. I am still in slight shock, all these years later, when I think of that little “live healthy post cancer” workshop I attended—in a room with about 10 other women, none of them understanding what I meant when I announced my stage and type at the meet and greet part. “HER2? What does that mean?” Guess they were all estrogen receptor positive? Good thing a triple negative patient wasn’t there that day.
People like a beginning and an end—a cure, and end to treatment, and the absence of ever needing to think about cancer again. They like slogans and soundbites. And everyone especially likes a happy ending. A story about a former president’s cancer, the idea it might come back, but given his age, something else will cause his death earlier—that is too confusing! Better to simply think he “won”. An aging actress on the road with her play needs to reassure potential ticket buyers all is well; she’s going to be in the show coming to your town next year. Sell the joy! And so what if, 15 years from now, a small news item in the back pages appears announcing her recurrence and quick death—“I thought she beat that”, people will think before quickly forgetting the story and moving on to the latest young pop stars’ exploits.
But here’s the thing.
When celebrities and headlines go on and on about “cured!” and “beat cancer!” it confuses the people we—regular average cancer patients—have to interact with every day. What do I mean I have an oncologist appointment? Didn’t I finish up with cancer years ago? Old old old Jimmy Carter beat cancer, why can’t I? Look how peppy Joan Lunden is, why isn’t my breast cancer over and done with? Do I really need to point out that celebrities stick to a cancer culture approved script? Am I being too hard on actors and TV talks show hosts for needing a script rather than thinking and speaking for themselves? Whoopsie, did I just write that out loud?
Words matter, as so many inspirational posters like to remind us. A little celebratory slip of the tongue: “I’m cancer free” confuses the cultural conversation around cancer. And that is why so many of us in CancerLand got so bent out of shape about these stories. People without up close and personal cancer experience will happily go back to their fairy tale (My Reality and Your Fairy Tale), and assume the celebrity is “all done”, and cancer is curable.
It seems once I got my cancer diagnosis, I learned a second language. NED, estrogen receptors, chemobrain, pinkwashing, argh, do I need to go on? I do find myself translating at times. And it seems that the area of language in which we CancerLand residents must be MOST careful is when discussing the after-treatment (if there is even a post-treatment status, because generally for Stage 4, there is not) time. So when Rita Wilson says something like cancer-free, we find ourselves having to explain so much. And it is tiring.
This brings me to another little tidbit of translation, or more like re-defining words.
Reading FB comments is always a hazard, I know, but of course I did and the typical stuff happened in threads about Wilson’s news. A few advocates attempted to explain and correct the “cancer-free” issue. Naturally, those who believe that any kind of truth-telling automatically equals negativity, began to scream about it, calling the comments “toxic”. I’m not as active or strident as breast cancer advocates; unwilling to “get into it” very much. But I could not help but chime in with my annoyance at this. I mean, come on, why call a different opinion toxic? Isn’t that a bit overdramatic? In my mind’s eye, I saw a person clamping hands over ears to shut out the opinions they disagree with. And yes, I over-dramatized myself, picturing Gollum saying “not listening, not listening!” LOTR nerds will know what scene I’m referencing.
It irritates me that thoughtful dialogue cannot occur without the situation devolving to this. I found myself wanting to engage in a little careless re-defining or mis-translation myself. I get sick of reading about false positives (because I was a false negative). I know what it really means here in CancerLand, town of breast, but I have this fantasy. I want to call all these people who redefine words like toxic, who think cancer is curable by eating right and keeping a kick cancer’s ass attitude, I want to call these people “false positive”. Because to me that is what is going on: thinking something is one thing, and maybe it isn’t. So part of me is like, OK fine, embrace the positive-negative dichotomy and let’s hope you don’t end up bitterly disappointed in your mistaken idea cancer is really, really gone.
But of course, it is not in me to do that. I don’t like the misinterpretation of words and concepts. And I am tired of the strict black and white boxes being forced around the cancer conversation. Spouting facts does not equal being negative—looking at stats and numbers can actually be quite apart from such silly notions as “don’t be a negative nelly, be positive”. That kind of black/white, half-full/half-empty thinking must come to an end. Embrace the complexity of life, people!!!!
But then, who am I kidding? Everyone wants pat slogans that translate to their liking: “cancer can be cured!” Conversation over, and what have we lost in translation?
anotheronewiththecancer 
In my safe world where everyone knows and understands my stage IV diagnosis I am lulled into thinking people “get it.” But, I went to a gathering a few days ago with strangers and the first comment addressed to me was that Jackie Collins said it was a chronic disease. I gently said that she died 5 days after that comment so it wasn’t so chronic for her. Blank stares ensued. I was then asked when I would finish chemo. I said never and got more blank stares. People just don’t or can’t hear it. It is too hard to think the woman standing in front of them might die in a few months. I wish people would ask me more questions si can educate them but it doesn’t happen.
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I know what you mean–having much of my online activity limited to cancer circles these days, I find MOSTLY no need to explain much–including this blog! An incident happened last year to let me know I write this blog on the assumption all readers have knowledge of CancerLand. But I’m constantly reminded of the holes in knowledge–a whole other post coming up.
But I think often people don’t wanna know–and that is why you don’t get the questions, ya know?
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*so I can
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This nonsense does such a disservice to all of us who’ve had cancer. And there are so many science-disbelievers out there, who aren’t even aware of their own hypocrisy. How do they think that aspirin was invented, never mind cancer treatment? It’s so frustrating. After all these years, I almost never try to explain that, no, I’m not ‘all better’ now, because people just can’t even get the concept of longterm collateral damage, much less the risk of recurrence. Another great, and sadly apt, post. xoxo, Kathi
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Thanks Kathi. Funny how people take the word of an actor or whatever over the words of medical professionals, hmmmm? xoxo
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Had I been in that room with you, I’d have been the one to explain the triple negative variety, as that’s what I had. I too have been baffled that even those with breast cancer don’t know the distinctions. Another woman I know, who-with a stage I hormone positive variety considers herself cured, “as if I never had cancer”as she said-once commented that it was “better” to have the hormone positive variety than other types. At that point, I had to release my tongue from my teeth and say, yeah, just ask Elizabeth Edwards about that. How did that stage Ii hormone-positive diagnosis turn out for her?
At this point I figure my role is to educate people, even those who should know better. I figure that for some, maybe especially those given the diagnosis, the information is overwhelming. Thus, they limit their knowledge intake to what they can manage to understand, which may not be much.
The same goes for genetic testing, something I am going through now. Very complex subject that gets dumbed down for popular consumption.
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Oh wow–as if she’d never had cancer? Wish I had that problem! It isn’t even the scar really that reminds me anymore. It’s the odd pain, the quickness to tire, stuff like that! Sigh.
Yes, I know the limiting of knowledge tactic, I might have done the same, but being E/P negative for example, I HAD to learn some stuff. I don’t trust myself much to educate people on science/technical stuff.
Ugh, the genetic testing thing–I really resent calling it he Jolie effect. I’m sure she did her best to explain it, but I fear now the general population assumes this “little” test means women should be proactive, and those that aren’t are just lazy or whatever. I mean, I tested negative for the mutation even with strong family history, so even if I’d had the test I wouldn’t have been “proactive”. I guess what I’m saying is that it seems like another way to place blame. Ah, I better stop!
Thanks for dropping by!
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I agree that it is exhausting to try to correct the misconceptions. And don’t even get me started on the whole positivity thing. Someone at work the other day said, “Be positive!” to which I replied, “Why?”
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OMG perfect! I’m gonna answer “Why?” now too!
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I am with Eileen, it gets tiring having to explain to people the reality of our disease. It upsets me that people who have an opportunity to reach a mass audience continue to mislead by providing non-factual information. Some people like their imaginary world, which reminds me of that quote you once shared (and that I love so much). A lot of this has to do with the idea that “we must stay positive or else”. I find it more beneficial and productive to face the truth but not everyone is comfortable with that concept.
Thank you for another great post, which I wish everyone would read.
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Lately I get tired just thinking about it! And I just read a comment somewhere in which someone said-if you can’t speak to raise awareness then don’t speak at all (or something like that). So not only do people want to perpetuate the fairy tale, they want to actively shut down any other “story line”. Amazing.
Thank you for your kind words!
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This is such a good post and you’re right, it does become exhausting when it seems we must keep explaining things. And don’t get me started on that positivity thing either. But still, if we don’t keep at it, who will? There’s a lot of denial and a lot of fantasy-type talk that goes on in Cancer Land. And I understand why celebrities feel the need to remain uplifting and encouraging, but in the long run, they often do more harm than good when they gloss over their cancer experience making it sound like it was just a bump in the road, which is fine if they feel that way, but… well, you know. People can handle the truth, but first they need to hear it. Thanks for another outstanding post. And happy holidays to you, my friend. xo
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Yeah, you’re right, if we don’t keep at it–what happens?
Ugh, if I never hear another celebrity’s personal victory over cancer story it will be too soon–groan.
I can certainly say I wish I’d heard truth before treatment, instead of the made-for-TV-special stories about cancer–would’ve saved me some angst!
Thank you Nancy, for reading and living my blog! Here’s to another year of us keeping at it! xoxo
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This whole topic struck a raw nerve with me. You are soooo right. I had not paid much attention to all the Cancer Celebrities other than thinking, “bullsh*t” when I would hear their stories on news or talk shows, and I would yell at the television that their stories are a disservice, “WTF are you hiding? Why don’t you tell it like it REALLY is???” Maybe because people like living under rocks where it’s safe in their own little world away from cancer, as if becoming educated about cancer will cause it, or talking with one of us, they might actually “catch” cancer. Sigh.
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Yeah, every time a celebrity starts up about breast cancer or any illness really, I cringe. I start to write a post and get overwhelmed. and other bloggers tackle it anyway. At this point for me, it is just a general thing–the individual celebrity “blunders” have just melted together in my mind and I kind of get real angry, then go “well that figures”. For me it is just one big mess: Etheridge with her woo woo, Robach with her early detection mantra, Wilson and her cancer-free–it’s all just noise to me, now. The only thing that plucks me a bit more is the comparison stuff and I will address that in another post–someday, ha ha!
Good to hear from you again, hope you are coping as well as you can–sending hugs to you!
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