The Myriad of Platitudes

I was watching TV when a commercial came on for one of those “Exposed to [THING]? Money has been set aside for victims of [whatever cancer]! CALL US TODAY!”—then the commercial proceeded to show images of gray-haired old men and just talked about how being exposed to whatever might cause cancer.

Now, I understand that exposure to these chemicals might be more likely to cause whatever one of the numerous cancers these commercials are targeted at—but why not at least try to be representative of the population? AYAs get cancer too! We get exposed to stuff too! We exist!

This commercial also perpetuated the use of the warrior language, which I do not like at all since we are not “victims;” we’re just coping with the hand we were dealt.

Sure, we meet the dictionary definition of victim: “one that is injured, destroyed, or sacrificed under any of various conditions” (per Merriam-Webster), but that feels passive, isolates us, and sounds like we are being attacked by cancer. It implies we have no control over things when we still have some control. We can choose if we want to do treatment, we can usually choose port or PICC, we can pick the time for our next appointment, we can say if we want numbing cream or not, and all other kinds of things that cancer muggles probably would never think of in a million years (or not even see as choices).

This brings to question all of the kinds of language used in our cancer experiences. One big one is toxic positivity—which comes with a whole pile of fun terms! Let’s list some of the greatest toxic hits that I am sure most of us have heard or encountered:

“[Your deity of choice]/the universe only gives you what you can handle!”

“Don’t worry. You have a good cancer!”

“You’re so brave!”

“You’re so strong!”

“Think happy thoughts!”

“Stay positive!”

I understand the myriad of platitudes that come out when a cancer diagnosis appears. I think that a good deal of young adult cancer muggles have simply never met cancer before—so they might think that “they’re too young for that” and that it could never happen to them. Sometimes they might not even be able to comprehend the stress that comes with cancer—especially that thing everyone loves, dealing with insurance! Sometimes some of us have to sit around for what has to add up to at least 24 hours of talking to doctors’ offices, insurance companies, and hospitals making sure that everyone filled out the right form or put in the right billing code. At times, it is just pure madness!

I’ve found that when dealing with insurance, once they hear cancer they just go, “Oh you poor thing!” You can practically feel the pitying look through the phone. Once, my insurance kept hounding me and asking if I wanted to sign up for their chronic disease management program. Finally, after months of calls, I decided to pick up. The person gave their spiel and then said something along the lines of, “Oh so what do you have?”

“I have both types of LGL Leukemia.” I could just feel the confusion through the phone. I explained that LGL Leukemia is a chronic leukemia.

She responded with something along the lines of, “Oh, well we only help people if they have diabetes, heart issues, or chronic diseases.”

The thought that went through my mind was, “But…I have a chronic leukemia—isn’t that a chronic disease?”

I believe the words that ended up spilling out of my mouth were, “My leukemia is chronic and I could use this program to help me deal with the stuff that sometimes gets denied.”

“Well, we don’t deal with cancer. I have some sites here for leukemia that I found on Google if you want those!” she said, attempting to be helpful with her response.

I declined her suggestion. She said, “You’re so young! How do you have cancer?!”

Sometimes those words (and similar phrases) ricochet through my mind—how do I have cancer? I didn’t choose to get cancer! Why are you asking me?

One day I got a blood draw and got the results. Everything (well, almost everything) was abnormal. My doctor repeated the tests and the results were still weird.

More testing (this time at an oncologist) was followed by a phone call, where I heard, “So you definitely have something malignant.” After weeks of doctor visits, eventually a diagnosis was settled on. Cancer muggles need to use compassion and think about the person they are talking to—not just give the preloaded, gut reaction of “Oh shit, cancer?!” Those responses that their brains must’ve generated at some point based on their previous encounters with cancer (if they’ve had any at all).

There are also the people who try to insist that people with cancer should be super duper happy and positive. A heaping helping of positivity must drive cancer into remission if everyone acts positively… right?!

They don’t understand that, like everyone, we have our good days and our bad days; some days we just need to pop a Zofran, try not to vomit, or cry while vomiting if it doesn’t work for some reason.

Some cancer muggles see us as a cross between inspiration porn and pity—they want to put us on a pedestal so they can get that dopamine hit. “Wow. I did a good thing today. I sure made that cancer patient feel better, didn’t I?” Sometimes, they just give The Look while walking by, or sitting in the waiting room chair waiting to pick someone up, or whenever else they might encounter someone dealing with cancer.

One of the best sources to find words that matter and feel comfortable for you is in your cancer clique (although clique can have some negative connotations—how about cancer club, instead?) There’s the classic cancer term, “scanxiety”—since who doesn’t have that?

We have the term “cancer muggle” to refer to those who have never personally experienced cancer. Overall, as a community, we come up with our own jargon, our own language, to refer to the shit we have to deal with, ranging from what people call their communities (lymphomies for lymphoma, uni-ballers for testicular cancer, aaaaand I just forgot the others that popped into my mind riiiight before I started to type this), to things like Red Devil for adriamycin.

Cancer is a weird time (to say the least), and the words we use can give us power; one oncologist told me to call it by its name and not just use cancer, because just saying that makes it Cancer, that big scary disease that everyone has those horrific images of in their mind due to the media portrayals of cancer. When you use the full clinical name it makes it feel less… overwhelming (even if it is just a tiny bit), because you have a name to put to it.

Sure, sometimes you need to say, “I hate you, cancer!” Sometimes you need to say, “Fuck you, Chronic NK and T-Cell LGL Leukemia! My life has been thrown off course because of you!”

There’s also times where you need to make it simple for the cancer muggles, saying, “Oh yeah, I have leukemia, and I’m doing treatment right now,” instead of, “Yeah I have a super rare blood cancer. I know you’ve never heard of it, and I’m currently doing a targeted therapy for it.” That can be a bit of a…mouthful for them.

While dealing with cancer, our words matter. Sometimes we have to tell people what words we want to use since they just don’t know how to refer to things without being awkward and spouting platitudes. Everyone in the cancer community won’t like the same things, obviously, but there are some things that most agree on.

I’m not a warrior. I’m not a fighter. I’m just a guy who got dealt a shit hand in life and I am making the most of it. Now I’ll end this with a phrase that all AYAs facing cancer love: Fuck cancer!