Tag: cancer warrior language

Rare Curmudgeonly Cheer

I am prone to shouting “this is why I love the Internet” when I see dumb stuff that makes me laugh. The meme with Joaquin Phoenix’s head progressing toward the east coast to represent the hurricane threat. A video of a bird throwing cups all over the place. Cat videos. Cat videos. Cat videos.

Oh I know, ire in comments and on Twitter, idiots sharing misinformation (“I’ll be right with you, someone on the Internet is wrong”—I love that cartoon), outrage at the slightest infraction, yeah the internet can be an ugly place.

But on the other hand, the Internet kind of saved me when I was in my white-hot-anger-at-Pink phase that October after treatment. Via blogging, and eventually other forms of social media, I learned I was not alone in my loathing of Pink—the rah, rah, the sexualization. Granted, I’m not as active as most, don’t have a huge follower base or whatever, but what little interacting I’ve done has been a comfort.

True, I’m a Curmudgeon, not particularly social, not as involved in the “community”—just my natural shyness and solitary tendencies (it’s an only child thing) at work. But, I know the community is there, and I am in it a bit. And I know there are thousands of patients who share my views and feelings. Knowing about those thousands became very important today.

I was in a conversation with a woman I run into often in my line of work—not a client, but another who provides services for my client. She is a very forward person—if she thinks it, she says it, regardless of tact. I am generally polite with most everyone, and try to keep my conversations about innocuous topics (“how about this weather?”). I tend to steer away deep discussions with people I do not know very well.

Today she brought up some NPR broadcast about how some cancer patients don’t like certain words—survivor and war were the ones she seemed to have latched onto—and how new words have been invented by patients. I think I’ve heard the broadcast she was talking about, but maybe not. Didn’t matter; I know this topic well!

She point blank asked me what I thought of these words. I calmly said I agree; I dislike most of the language in cancer. Of course, it is hard for me to not get very “deep” when discussing this topic and I found myself saying how much I hate things like “save the ta-tas”.

She said something like, “well, I think that is just how YOU perceive that phrase, that is not how—“

And I cut her off right there. I did so with great conviction.

I pointed out that yes, the intent behind that phrase is a clever, attention-getting ploy to “raise awareness”, but I am FAR from the ONLY person who dislikes the phrase. Not, by a long shot, the ONLY one who realizes that getting breast cancer often results in the amputation or mutilation of breasts—and how a slogan like “save the ta-tas” seems like it yanks support from the ta-ta-less, that it should be save the lives. No, there are thousands of us I told her. Maybe millions, tired and fed up with all the pink, with the baggage of October, of all cancer issues. I stated it as fact. It is not hard to find this anywhere on the Internet, voices raised in criticism of all the pink nonsense.

She quickly changed her tune, and pointed out that it should be about “saving the lives”. From there we progressed to a quick, but lively discussion about cancer, AIDS, patient blame.

Our conversation ended well—and perhaps I opened her eyes. Maybe not.

But for me the point was having that conviction. I KNOW there are soooooo many of us out there, loathing that old cancer-is-pretty-and-sexy thing.

No, it is NOT just how I perceive it.

Standing there holding my smart phone, I could’ve pulled up MANY articles that would prove that nope, it ain’t just me and how I perceive it.

As I tend to be less motivated to write blog posts for a number of reasons, I try to remember that every single criticizing post about all this pink crap—even if mine are on page 100 of a Google search for this stuff—are out there. The sheer number proves that NO, it isn’t just how I, or you, or anyone new to this breast cancer mess who just hates it, perceives it. When the newly diagnosed and disgusted are told, “that’s just how you perceive it, that silly slogan is harmless”—she can whip out her device and point out to all the ones who perceive it exactly the same way, and the ones who can explain why the slogan is far from harmless.

This is why I love the Internet.

(OK, OK, this post wasn’t exactly cheer, sunshine, and rainbows, but it is about as syrupy and cheery as I get. Next up, back to my regularly scheduled curmudgeon-ing.)

Uniform

Once upon a time, while walking a dog, I ran into an acquaintance and he introduced me to his wife. During the chat, it came up that I was a “survivor.” No lie, her immediate response was, “but you aren’t wearing your pink!” Actual quote—those words are seared into my brain.

I swallowed my irritation and said something inoffensive about how Pink does not really represent breast cancer in my opinion.

We left it at that. These are acquaintances after all, the kind of people to have polite, how-about-this-crazy-weather kinds of chats with; it can be hard to have deep conversations as a dog walker while trying to control barking, pulling, wriggling pets on a leash. I do not think my words about my disdain for Pink went far. I went on with daily tasks, and the incident haunted me the rest of the day, hell, it haunts me now. It was a one-two kick in the gut, that reaction, that statement. First (BAM!), the assumption that I had that particular cancer, and second (POW!), the assumption that as a result of having that cancer, I am obligated to don the Pink uniform.

Is it any wonder folks with other kinds of cancer, especially gynecological cancers, are so sick of breast cancer? I stood there, my female-with-cancer self, so within a split second the assumption was made I had breast cancer, because of the loud messages of Pink that breast cancer is the only one worth paying any mind.

To be fair, breast cancer is way more common than any other cancer except lung, and no one ever assumes lung cancer, at least for a younger woman with no cigarette stuck in her lips. So yes, most people are going to safely bet the favorable odds and assume a female “survivor” had breast cancer.

OK, I can maybe give her a pass on that assumption. But the second punch, aaarrrgghhh.

I had breast cancer, and therefore I MUST wear PINK every damn day? Really?! It was like, not only MUST I join in the Pink army, I have to SHOW IT by donning the uniform? Do folks really expect that?

Here’s the punchline to this story: the woman is a semi-retired nurse—who teaches intro to nursing classes at a local college. So I—unfairly, perhaps—expected more and better. I expect any medical professional to be a bit more savvy—would not their experiences, even for non-oncological nurses, inform them that there are all kinds of cancer? Don’t they see a more varied swath of patients and ailments? Am I really the first breast cancer patient this nurse encountered who disliked Pink?

This incident took place about a year ago. I did not write about for a few reasons. I was very busy, and in the few moments I did have to write a post, I was often distracted by other topics. Plus, I figured most breast cancer patients who are not fans of Pink have similar stories.

So why write it out now?

I keep remembering the incident because to me it seems almost like a fable or tale, telling what it is like to be a breast cancer patient–except it really happened. And the message of the story is simple: this is what the general public expects of breast cancer patients. We are to join the army, battle, and don the pink uniform—there is no room for different opinions, questions, challenges, or anything. Patients who do not conform just befuddle others. Those of us here in Cancerland know that there is no one right way to do cancer, but the general public does not understand this.

The recent months have been full of celebrity cancer stories, setting standards for ALL cancer patients, and much has been written about them—and yes I’ll contribute to all that chatter (when I get a chance to think and write). I know I will refer back to this story again. While I and others know it is acceptable to do cancer differently, that is not what the story on TV tells. And so, we are expected to don the Pink Uniform literally and figuratively.

Why This Smart Ass Does Not Kick Ass

Preface

People always tell me writing is therapeutic, and while I of course believe this, I never experienced it so viscerally until I began this post and the next.

I’ve mentioned many times in various posts that I loathe the battle language of cancer (the most pointed example is in The D-Word). I do not call myself a survivor because I have not died of something else yet, and some with Stage IV have animosity toward the word, rightly so. Battle, fight, warrior, kick cancer’s ass—all those words or phrases continue to rub me the wrong way, and I never questioned why. I guess I just assumed myself to be practical, pragmatic, and I’m just not the cheerleader type.

Then, I started a post about how the drop-off in activity and in amount of people in a beach resort town on Labor Day is similar to the weird quiet that happens when cancer treatment ends. It is nearly impossible to explain this kind of sudden absence of people, attention, and activity to those who’ve not experienced it. So I began writing and thought I should include some examples of beach life, what my experience has been living and working here all of my life. And that is where I veered off track. But as I wrote, I learned that this life I’ve led that is so entwined with the rhythms of beach life really influenced my way of thinking about cancer in ways I am still understanding. I learned something about myself…grrr, no, wait, I mean…good!

So this post is about how life-long residency at the beach shaped my views as a cancer patient. The next post, Labor Day, will be what started me thinking about it all.

eastcoast

Shopping Madness at the Beach

A couple of careers back, I worked in retail. Working in retail is a special kind of hell. At the beach, it takes a peculiar turn, especially on rainy summer days. All the “sister” stores under the management of the area supervisor are two hours away in the cities. The supervisor and staff members of those city stores never understood rainy beach days; at least while I still worked there (this was several years ago). Rain at the beach makes people shop and spend lots of money. So a GREAT business day would result, in which sales would be as much as ten times the normal day. Well, income-wise it would be great—but days like that are trying, customers are grumpy and angry at staff as if we caused the inconvenience in their vacation, the store would get destroyed, a lot of theft would occur, and it took a lot of work to restock and recover. In short, we earned our minimum wage and then some on those days.

When reviewing sales increases and decreases on a later conference call with other area stores, our beach store would get accolades on the “great day” and invariably would get asked, “what did you do?” Saying “it rained” was not an acceptable answer. “You and your staff should take credit for such an awesome day,” someone would chirp, probably a cheerleader type. I never would and here’s why: if I said “yeah, we sold the crap out of those t-shirts, we’re awesome, hurray for us,” that would mean I’d have to accept blame for the opposite. A store is always compared to the sales of the same day the previous year. I HATED days when it was sunny, and I could tell by the ginormous sales numbers from the year before that it had rained. “Why are your sales so much lower this year compared to last year?” the district supervisor would ask, sternly. And yes, again, “it rained on this day last year and this year it is a totally sunny day,” is not an acceptable answer. Someone had to be held accountable, for not leading, selling, motivating and what have you. But I refused to blame myself and the staff for something beyond our control. We could not sell t-shirts to people who opted to take advantage of a great beach day rather than go shopping.

I’ve been dealing with the influx and outflow of people to the beach, how that impacts things like traffic, how busy the grocery store will be, and just a bunch of other quirks I could never explain, for most of my life. But now I see how my resort business approach shaped my view of cancer.

I never took credit for a good thing that happened when I did not have anything to do with it, like rainy day sales, because I did not want to be blamed for not making it rain when sales tanked—because I cannot control the weather.

It is the same with cancer. I will NEVER blame anyone who dies of cancer as someone who failed to “think positive to overcome the disease” or who “just gave up, did not fight hard enough, a LOSER”. Those people died because cancer kills, and cancer causes death because medicine still cannot stop that. Cures still seem pretty far out of reach. The latest Pink Ribbon Blues essay reminds us that there is no link between positive attitude and surviving cancer. Treatment effectiveness was NOT a result of my adoption or rejection of “warrior” status.

Conversely, I am not going to label myself as some kind of cancer ass-kicker. I may be frustrated at the medical industry for not being as far into conquering cancer as I’d like, but I know that leaps have been made and I benefited directly from the current successes in medical knowledge, and from the decisions of my medical team. I did not kick cancer’s ass because I’m so positive—I am a curmudgeon when it comes to cancer, after all. And I’m lucky enough to not be Stage IV.

I’m glad the drugs and the medical team were effective, me and the insurance company (and the money I paid into my insurance plan) paid enough for those things, so I shouldn’t need to do any ass-kicking.

People throw around terms like optimist, pessimist. I just try to be a realist. A life of beach business brain got me here, apparently.

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