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.  

Thanks and Congrats!

With a reach of about 9 million, YOU and YOUR wonderful tweets about the REALITY of cancer made #CancerRealityCheck a success yesterday!

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Of course, it is difficult to read the tweets at times, and even more difficult to compose them–we all know this. But it is even harder to live it, the way we live it everyday. And we know cancer will not be eradicated any time soon. How many more are being diagnosed this minute, as you read this? How many will be shocked at the reality of the experience, will think, “I wish I had known this before”?

From little things, like the constant fatigue many of us (still) deal with, to the big things, like the gut punch of seeing the names of dead friends in a contact list, these are the realities of cancer. These are the things that just never seem to make it into the inspiration stories we see on TV. All we want to do is get a little honesty out there.

And you did that.

Please keep using #CancerRealityCheck when you want to drop a truth bomb out there. And stay tuned for future efforts to get the hashtag trending, for future Twitter storms.

With gratitude,

  @curmudgeo 

It’s Up To Us

How many times have you rolled your eyes, and/or sighed, while saying, “People who don’t have cancer just don’t get it”? I can tell you I’ve done it more times than I could count. I still think it too. In fact, my blog is generally written for people who have cancer—I write with that specific audience in mind. I don’t waste space or time explaining issues and jargon for uninitiated readers. I do this because I remember what I was like before I got cancer–I never read anything about it. There’s just too much information out there to read, hear, and watch. If something does not directly impact me, I cannot allocate time to it. I’m sure most people are like this too; this information overload age is just too overwhelming.

But here’s the thing—and there’s always a thing, right?!

I’ve challenged myself on this view quite a bit in the past year. And the notion I keep coming back to is this: Maybe it IS my place to explain cancer issues. Maybe it’s….not my JOB, exactly…let’s say maybe it a role I willing take on.

You see, it is oh so easy to dismiss the people who don’t get it, because they have yet to experience cancer in an up-close way. We are all too busy, too distracted, too tired, to take it on. And why bother trying to convince people who are unwilling to take the time to read or listen to our words?

It is also oh so easy to dismiss Twitter and other forms of social media as armchair (sl)activism. I know that they are, to a degree. But guess what? Often, other media reports on trending hashtags. We all know the impact of viral videos. To dismiss Twitter storms and trending hashtags as silly Internet stuff is to sorely underestimate how much these things steer national and global conversations. Believe me.

It takes a great many of us to tweet about #CancerRealityCheck. But just think of the impact if we get it trending! What is it you want others to understand about your cancer experience? What do you wish would change about the way our culture treats/understands cancer and cancer patients? Personally, I hope that with enough Twitter storms, I’ll never have to see another “what I wish I knew before my cancer diagnosis” article again. I was sucker punched by my own diagnosis. I’d like that to never happen to anyone else.

Please join @abcdiagnosis @bccww and myself on Sunday in taking on the role and helping others “get it”. If not us, who will do it? Because we can, you know.

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Sign up for the Thunderclap, and tweet your reality for that hour after it happens (see previous blog post for details). It is up to US, to YOU.

Thunder and Lightning Very Very Powerful

This is a call to ALL cancer patients, survivors, former patients, caregivers…..EVERYONE, who has a desire to show the REALITY of the cancer experience. Sign up for the Thunderclap to take place on Sunday, 4 Feb (5 PM in the UK, Noon Eastern US, 9 AM Pacific US times). Tweet your experiences the hour after the Thunderclap, using #CancerRealityCheck.

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Remember it’s the amount of TWEETING and the amount of people RETWEETING your tweets that will get us noticed AND (this is important) ONLY use  on the tweets as this will help to trend – using any other hashtags will diffuse and dilute the message on the TRENDING board!

Any suggestions of cancer realities for your friends to tweet out are most welcome. Search the #BreastCancerRealityCheck for some ideas from 2016-17.  We look forward to reading some great tweets!

 

This Is a Call to Action!

The group of tweeps behind would like your help in creating a tweet storm on World Cancer Day (Sunday, Feb 4, 2018)!

Background: If you are unfamiliar with , a short description:

The hashtag was suggested to be used on one day along with tweeted facts about the breast cancer experience that are generally not featured in the pink victory ads and feel-good stories featured in October (Breast Cancer Awareness Month). Things such as pictures of mastectomy results to offset the generally provocative and sexualized images used in BCAM ads for example. Or honest anecdotes about some of the lingering side effects of treatment which are generally not spoken of in the dominating narrative of “winning/beating/surviving”. Searching the tag on twitter can give a broader picture of some of the truly innovative tweets using this hashtag. For a broader more in-depth story, see Cancer Realities page.

Goal: We’d like to expand the reality checking to ALL cancers. Most cancer ads and feel-good news stories follow the general victory narrative similar to the BC format. It’s as if the pink ribbon narrative created a template—but so many of us with cancers of all kinds just cannot fit into it! Note the rash of think pieces that erupted after (American) Senator McCain was encouraged to “fight” his terminal brain cancer DX. The lack of knowledge and understanding about the realities of cancer on display stunned our community. Our goal is simple—change the cultural narrative and show what getting cancer is REALLY like—how it differs for each individual. (We are so NOT a monolith).

Processes: Given our experience with , we’ve already established some of the groundwork. Here is what we did in October: we targeted the “fairy tale” angle that seems to be divorced from reality for many of us with breast cancer and set up a Thunderclap with this message: “Breast cancer stories are NEVER pink fairy tales. ~1,430 die per day. Tweet your truth!” We created a simple image that worked with our idea of reality—the burning ribbon. We opted to have the hour after the Thunderclap occured as the time we encouraged people to tweet the most in an effort to get the # trending. Of course we wanted the # used all the time—but if we tried to get as many people to tweet in that small concentrated time, in hopes of reaching the thousands of tweets needed to trend.

For our inaugural event we’ll create a tweet message to augment , or perhaps contrast, the smiling booklets in oncology office. ~8.2 million died worldwide in 2012, and most cancer deaths are from lung, liver, stomach, and bowel cancers (most recent stats from World Cancer Day) and we would like to drive that message home!

We need your help! What are some realities you’d like to share? Tweet your truth! Encourage others to do the same, and to spread the word of this event! We’ll set up a Thunderclap shortly, to take place on Sun, 4 Feb, 2018.

Remember it’s the amount of TWEETING and the amount of people RETWEETING your tweets that will get us noticed AND (this is important) ONLY use on the tweets as this will help to trend – using any other hashtags will diffuse and dilute the message on the TRENDING board! These are the bare bones of what is involved in getting the storm going. We encourage ideas to make this bigger and likely to get noticed—media coverage is desirable.

We look forward to working with you.