Tag: blame the patient

All the Worst Cancer Lessons

talking shitOf course it’s the toilet topics that drag me back to this abandoned blog.

Yes, I’m referring to the “poop plume” reports that were everywhere last week (or was it the week before???). You know what I’m talking about, right? That when you flush a toilet all these microscopic particles rise into the air, and if those particles are from someone with COVID, well, YOU—the person also in the public restroom—could get infected. This is the reason I refused to use a public restroom since March. I knew this. I knew it because just prior to entering into chemo treatment I had to take a “chemo class” in which the importance of closing the toilet lid was taught. Hell, I actually knew it before from an article I’d read years before. But I confess, I didn’t remember it until I was sitting in that class. Didn’t matter; I’ve always closed the lid and kept it shut. I dislike open toilets—always have.

My point is, this was just another thing in a long list of stuff that cancer patients, current and former, learned from having cancer. And I was just like, ENOUGH!  

Yes, I saw right away, as shut-downs began, all these “lessons” from cancer were going to come into play. I kicked myself for not having written my long promised (threatened?) “shitty” cancer lessons listicle. And then my brain and soul shut down in panic. So, I was quiet for a bit—I just could not bear to read any of the cancer-COVID pieces.

The first stupid lesson, that I momentarily forgot—I made a cancer-rookie mistake—was the “marathon-not-a-sprint” error. You know what I mean—that thing we as cancer patients experience in the beginning. All the communities want to “help”, to “do something”, and it’s this mad rush, this outpouring of generosity that cannot possibly be sustained. Kind of like how everyone buys cancer patients food and books right after diagnosis, but after a year or so of treatment, when some of us need help the most, everyone disappears.

I’m ashamed to say I took part in that mad rush in the first weeks myself. I was just NOT grasping the scope of a true pandemic. I made myself super busy, trying to collect and report info about how kids in need could get free lunches with schools closed. This was a slice of my social media management job I do for a non-profit. I was in a frenzy trying to collate all the random resources popping up—because it was a mess. Just organizations and businesses all doing their own thing—no structure.  It took me a few days then I realized it: this will die down. This outpouring will end with a whimper. And it is NOT my place to force structure on it, at any time.

So, there is the “close the toilet lid” lesson, and the “marathon-not-a-sprint” lesson. What are some others that I recognized—with a stab into my heart every single time?

Let’s see—there is the whole “language” thing. The framework applied to COVID as “enemy” (it’s not a sentient being, therefore not capable of evil intent, but whatever!), this situation as a “war”, and countless store signs urging us to be #MarylandStrong (or whatever town or province is applicable). Part of the language games, naturally, is the labeling of “heroes”. Because we need heroes in a war, right? Predictably, then came those who rejected the label of hero—not that I blame them at all. Healthcare workers didn’t want the label, they wanted PPE. Grocery workers didn’t want the label, they wanted better pay. It was just….my entire cancer experience played out on some grand scale, inescapable.

And yes, the conspiracy theories kicked in rather quick, didn’t they? And the anti-vaxxers who like to come into cancer culture and make a mess, well, they are still messing in COVID.

Worst of all for me—which will have to be a future, separate, blog post—is the economic inequality. Not just that, but the fact that people are so inexcusably ignorant about it. It’s always so painful to read something written by a musician I admire in which they stupidly say “we’re all in this together.” No, just—NO.

I guess I’m just frustrated reading and hearing so many people on the news say something we as cancer patients have known for so long. I remember listening to one of my regular pods and the hosts discussing how shocked, shocked!!, I tell you, that someone died of COVID at age 29 but when it was revealed she was a bit overweight, all the “patient blame” started in. DUH! How many times have cancer patients talked about that (see here)?!

It just proved to me, once again, that until some people experience a thing up close and personal, they just…don’t get it.

I could dive deeper into that previous sentence, what with all the privileged germ carriers invading my resort town, all the nastiness taking place…but I just don’t have the stomach for it right now. It really is too much.

So that’s where I am right now. Totally “triggered”. Trying to hang onto a sliver of sanity. Exposing myself to the worst of this whole thing in my political volunteering, then healing myself with my one remaining paying gig creating “uplifting” social media posts. (Crazy, right? Me, the absolute Curmudgeon creating that kind of thing! But I do it!)

Until next time….when I come back here to scream about my biggest and worst fear, which has been magnified by the pandemic.

Peace to you.  

SELL!

I am re-posting what I wrote a year and a day ago. Why? Because the issues are boiling up again. (The relentless repetition in CancerLand Culture deserves a post of its own some day, I’m beginning to view relentless repetition as a weapon.) In my view, and I think others share this view, medical establishments are misleading the public with their ads focusing on patients fighting cancer, and winning. Rather than leading a change in the discourse, a change focusing on science and facts, some large “name”, as well as some small-town no-name, facilities have chosen to perpetuate the dominant, persistent, same story-different day narrative of cancer as this opportunity for personal growth, so patients can rise to the challenge and beat cancer–along with a little help from staggeringly expensive treatments provided by the facility in question, naturally.

Some would say it’s just as bad when a fundraising organization does this, since they are often a resource for medical facts for the newly diagnosed. I don’t completely agree, but I still think the images they sell with the narrative are repugnant. But it certainly is not new, it keeps popping up, as I say in this old post. Lots of folks were upset with the Stage 4 martial arts patient in the Komen ad last year; I just thought it was BUSINESS as usual.

I don’t know what the answer is-yes there needs to be funding for research and so far the selling of positive, upbeat, winner patients (and boobies–don’t forget ta-tas and immaturity as a selling tool) has worked. To me there is no use in denying this, in fact, it needs to be recognized and discussed. I am simultaneously repulsed and grateful (see Burden of Gratitude). Cancer patients are commodities. Some others in the community likely think: “So what? As long as the money pours in to do research so maybe I can survive, who cares?” And maybe they have a point. But it comes at a cost (again, see Burden of Gratitude).

No I don’t have a better idea–that is not my field of expertise, so it is not very fair to expect a solution from me. I’m just complaining as usual. Wondering what you all think of all this. All I know is, there is something very unsettling, very creepy about it all. And certainly a whiff of dishonestly, of deception.

Anyway, am I a Cancer Patient or Blender? What are you?

Always In Outrage Mode

Yes I’m a curmudgeon so, yes, I do tend to be a raw nerve, always ready to be annoyed.

My last post included the quote about “just because you’re offended doesn’t make you right”, and I’m finding that I need to take my own advice so late tonight.

Looking through the Tastefully Offensive blog, which I normally like (stupid pictures of dogs & cats!), I found Dina Goldstein’s “Happily Ever After?” series, featuring Disney princesses (Snow White, Cinderella, and all them) in various “real issues” (quote from the artist’s website). So we get Cinderella drinking heavily in a bar, Snowy with a bunch of kids and living in, uh, less than a castle, etc. And poor Rapunzel, sitting in a hospital, with her long hair sitting beside her, bald head shining, getting chemo. Yes, she has cancer, according to the artist’s explanation.  (Now would be a good time to check it out, just Google her or the series name, I’m uncomfortable including a link).

I am basically fine with the work; I interpret it as a challenge to the Disney and the princess culture that seems to swallow young girls. My issue is with Tastefully Offensive, because they created a blog post featuring all the photos and titled it “Fallen Princesses”.

So my question is, how is getting cancer make one “fallen”? I suppose none of the princesses are really fallen anyway; this isn’t the 1950s where getting pregnant makes a woman fallen, and it is a woman’s right to drink up a storm in a bar. But the cancer one really bugs me, it insults me because it hints at that “blame the patient” thinking.

But the name of the blog does contain the word offensive. So I re-read the “outraged cancer patient/stop blaming the patient” comments I wrote at the bottom as I prepared to re-blog, and then I hit cancel.

Damn. I hate taking a taste of my own medicine

Part 2—In Which I Do Not Cool Down Later

I suppose normal people get mad about something, and then cool down about an issue as more time passes. Not so for the curmudgeon. I wrote the previous post in a fit of white hot anger. I went off. I blew a gasket. And a million other clichés anyone can think of. One would think that after 12 hours have passed, my hot head would’ve cooled down. Nope. If anything, my head is hotter.

I wrote from my narrow minded own point of view. That “Time” post contained some—for lack of a better word, triggers—for me. I get so tired every Mother’s Day, the women who’ve chosen to not have children write blog posts or news articles defending their decision. Well, I like reading these pieces, it makes me feel like less of a freak for my own stance. I just hate the way these things pop up every May in an almost defensive “I chose not to have children and that’s ok, I’m not just some sad, unfulfilled woman crying this whole day” way that irks me. I used to think not having kids was a normal, logical choice for myself. With each passing year, I feel more and more as if I’m viewed as some kind of radical, sticking my middle finger up at society by not procreating. Well, yeah, I often am sticking up my middle finger, but in lots of ways for lots of reasons, not child related!

The other trigger is the focus on estrogen positive cancers, ignoring HER2 positives. I actually understand that a bit; only 20% are HER2 positive, so naturally most conversations or information about breast cancer will be about the majority, as maybe it should be. Come to think of it, I marvel at the invention of Herceptin. I cannot believe Big Pharma went out to make a drug for such a small part of a lucrative market (gonna have to read up on the history of that drug). But hey, that drug is the third top seller of all cancer drugs (see here), so I guess I shouldn’t feel bad for the poor ol’ drug companies (YES, being VERY sarcastic). I imagine the sophisticated marketing plan discussion for the drug boiled down to “hey we are only going to be able to get a portion of these desperate women (read breast cancer patients), I know, let’s charge the shit out the women who want this drug!”

But this morning I put myself in the shoes of women who had kids and got hit by cancer…especially estrogen positive cancer. Or wanted kids, and have been denied the chance to have them because of cancer. Or are indeed estrogen positive and chose not to have kids. How do these women feel? If any of these women interpreted the “Time” post the way I did, (that having a baby and breastfeeding it for a year is a way to prevent breast cancer, and if you got breast cancer because you didn’t do this you deserve it, and you’ve put a burden on public health), what must these women feel? If you are such a woman, reading this, I welcome comments (to me, to others, have a conversation here if you want, let loose, I LOVE that). I hesitate to speak for any such woman. I’ve done so before (here), in putting myself in the shoes of those who get so-called unnecessary mastectomies, because I can understand it, although I got the “approved” lumpectomy instead. (Still cannot believe I did that, I fall into so many small percentages regarding cancer, I don’t think the “low probability of breast cancer returning in same or other breast” as doctors like to yammer on about can actually apply to me. I had less than half a percent of a chance of getting cancer before 40 and I did, so you over there with your low stats bullshit, bite me.)

So thoughts on this topic—let ‘em rip, because I want to know. And thanks Cancer In My Thirties, for making me view it another way!

In the meantime, my challenge to the two doctors (Dr. Kathleen Marinelli, MD and Dr. Melissa C. Bartick, MD) quoted in the “Time” post regarding how breast cancer can be prevented by breast feeding: Good job on finding a prevention that many of us are so desperate for. Now, figure out a way to take that knowledge and turn it into another preventative method. Not every woman is cut out to be a mother, and they should not feel like not fulfilling their biological imperative will kill them.

Aggressive breast cancer in more young women, study finds

And in this article about it, once again putting off pregnancy is blamed. Great. I never wanted children and wisely chose not have them, and I got cancer for my troubles. Really? Blaming the victim again? Make it stop, please!

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