After All This Time

After all this time, scanxiety is still a bitch. It will be 8 years since diagnosis in October for me, and I’m impatient with myself. I’m soooooo jaded about EVERYTHING in cancer world (and elsewhere) yet I can’t seem to be jaded about my own fear.

Some annual mammograms are worse than others. I was tense last year, but not very much. I kind of figured it would “all be OK” and it was. This year I’ve had some pain on my right side, around the breast and under the arm. That would be the other side—my cancer had been on my left. I’ve also had some nagging throat/gland pain, so my paranoia is quite high. So naturally, as you can imagine, I’ve been a massive asshole for the past month or so. Super irritable. Quiet. Too much in my own head, up my own ass. What little “acting upbeat” energy I mustered, I saved for my job, and I’m ashamed to say I didn’t manage that quite well either.

When I went for my mammogram a couple of days ago—the oncologist always schedules a diagnostic, not just a screening one—I brought up the pain, and was approved to get an ultrasound too. All is well (with that; my throat issue will be dealt with next week). Two things struck me so hard during that hour or so it took to do all of this. The first was an idea that maybe I’m good at manipulating this situation. There is a sort of—not privilege exactly—being a former cancer patient. I was believed, there was no question. I know how to phrase it in med-speak: “I’m experiencing pain in the lymph area, and the side of the breast,” I say, so calmly. And they are all over it. It just seems to be in great contrast to things I’ve read (at random, they just seem to pop up in feeds lately) about womens’ pain being dismissed, chalked up to mental/emotional stuff. And while I still carry around a grudge about my first ever mammogram totally missing my giant-ass tumor back in 2010, I no longer mention it in the threatening manner I used to use to let imaging techs know–hey, you fucked up with me before, don’t let it happen again. What a weird status, to be a former cancer patient in the imaging center.

Second thing that struck me was just how much I HATE all of this. I hate the mammogram, it freaking hurts, especially on my left—the impacted side, the nippleless one. I always think I’m going to faint, but luckily I manage to get through. I hate sitting there in the ultrasound room, I hate the gel. I hate going into any medical facility, if I get right down to it. I hate being older so that the likelihood of potential diseases increase each year—any disease—whatever that will force me to take meds, see doctors. Yeah yeah, aging is a privilege denied to many, too many that I’ve known. So I’m not doing the “getting old isn’t for the faint of heart” thing—but, dammit!

When I was making my treatment decisions during that year, I remember a friend advising me to just “chop ‘em off”. So insensitive and I’m still sore about that. But on the other hand, before my diagnosis, I probably held the same view. It was only when faced with the reality that I recoiled from that caviler notion, and decided to take the lumpectomy the oncologist and surgeon recommended—because my chemo had done “so well”! Not sure why I didn’t want to lose my breasts, they aren’t great or anything, and I’m NOT a beauty queen, it was kind of out of character for me, really. Afterward, I was a bit smug, as I read all the articles during my early blogging days saying women were over-treating, jumping the gun in bi-lateral mastectomy, which does NOT increase survivability, does NOT decrease recurrence (cancer very rarely jumps from one breast to the other). I was prideful of a rational decision. But really I was just afraid; of what I don’t know. There are days I regret it. I know full well this is stupid, removal would prevent very little, but when scanxiety kicks in, rationality flies out the window. And I would just redirect my paranoia to other body parts—I’m doing it right now!

(NOTE: I’m not a medical professional, don’t let my confession of regret inform your decision—hell, don’t take ANYTHING I say or do as a factor into a decision—I am the worst, trust me, I’ve lived with myself for 46 years, I repeat, I’m the worst.)

I think I started this blog in 2012, so it is nearly 6 years I’ve been at this. I bet I can find complaint posts from as far back as 2013-14 regarding my frustration with the bi-annual “mammograms are not that great” debate, the cyclical debates about war metaphors, just everything. Feels like I’ve heard every angle to every argument about a million times. As I’ve said on this blog repeatedly, I’m short on patience. I cycle through things quickly. I get jaded fast before others (new patients I guess) even discover some of this stuff. So now I’m a bit jaded and impatient with myself. So often in the past year I’ve written posts here and on Facebook that cancer culture and the pink shit has GOT to move forward, the stagnation is choking me! Now I’m gagging at my own stagnant self, because I am still reduced to jelly knees when the annual trek to the imaging center arrives.

Longtime readers know, I’ve been absent here because I’ve switched focus to politics in the past 18+ months. But I’ve even been lame with that. Every day is a new low, a new outrage, and I am very burned out. This is not good for someone who has no patience (like, uh, me!). So I’ve been careful on Twitter, on all 3 of my accounts—nothing worse than an angry tweet, screenshots are forever! And Facebook’s algorithm is so stupid I just keep seeing the same stuff over and over; I do little 1 minute scrolls on my phone, but I barely register what I see.

I guess you could say I’ve disengaged a little bit. I needed a distraction for April and May so I concentrated on the end of the TV series “The Americans”, interacted with other fans—it was nice. I needed that escape.

Of course, I cannot stay disengaged for long, real life intrudes. I was stuck in traffic the other day (summer at the beach, y’all) behind this car with a multi-colored ribbon sticker that said “support cancer awareness”. It took all I had to not leap out of the car and shake the other driver: “what the hell does that even mean?!” I was so overcome with hatred for the word “awareness”, for the fact it has lost its meaning. And just a few minutes ago I was trying to listen to the 50 freakin’ podcasts I’ve downloaded on my phone and an interview with Amy Robach popped up. It was only a 15 minute thing (or so—I listen at 1.5 speed or I’d never catch up). But she managed to say every damn cliché known to breast cancer narratives (yes narrative is a damn cliché too). I only agreed with her on one thing: that it can kind of suck that docs tell us our treatment is “our choice”. I mean, I appreciate not having some god-complex-afflicted doctor command me from on high like in the old days, but on the other hand, I am paying for their expertise, because I sure as shit don’t have it. Everything else she said was just a mess. She started right off with the whole cancer makes you a better person myth that is oh so damaging. I would’ve turned it off, but I was washing dishes, and I just didn’t want to take the time to stop, dry my hands, then go back to it. I guess I should reign in my harshness. New patients might find solace in her “story”, others still, who are more like myself—and probably like you if you’re reading this—have to come to their realization in their own time. I can’t just stand up and be like, “hey can we all collectively, as cancer patients, no matter what year of our journey we’re at, just stop with this tired old script?” I want to do that, but then, I’m a bit crazed of late.

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Well, I went off the rails a bit didn’t I? This has been a periodic, classic Cancer Curmudgeon word vomit, stream-of-consciousness ramble. It is the written, electronic, blog post equivalent of me poking my head out of the little cocoon I’ve developed, looking around and going “what the fuck?” and diving back down.

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Is Cancer Curmudgeon A Secret Optimist?

The funny thing is, as I sit down to begin this post, I’m feeling pretty low and pessimistic. It is possible I write this to remind myself why I do…anything at all in advocacy/activism areas.

This notion began a few months ago as I listened to my daily diet of political podcasts. This one pod featured some female activists; I cannot remember what they worked on—Women’s March? Some random state election? My brain just cannot remember. The interviewer asked how these women kept up the energy and motivation to keep on keepin’ on. One of the interviewees stated that activists/advocates are optimists by default—how else would they have the wherewithal to continue “The Fight”. (Not the actual quote, just the gist.)

This struck a nerve for me. As I’ve spent the past 18+ months doing stuff with my local Indivisible, I’ve often thought all the marching and whatnot is just useless. The political, no, wait…the cultural climate in America is too awful now. My natural darkness leads me to think we are on the brink of another civil war. I hope not, but I wouldn’t be surprised. Shortly after the election, I joined a few groups trying to bridge divides, but I gave up on them. My lack of patience and lack of spoons (see note at bottom on “spoons”) means I refuse to allocate my time on something I think will not work. So how is that I continue to get up, keep up, keep going to meetings, keep thinking about the issues?

Could I be—GASP—an optimist? Clutch the pearls! I mean, how much electronic ink have I spilled on this blog moaning about how I just hate all this “think positive” crap? I mean, look at what I call myself for heaven’s sake! It is NOT an accident—I really am a Curmudgeon, and not just about cancer.

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But wait, hold up. I’ve also said that yes, I am a cynic—and cynics are just (bitterly) disappointed romantics.

I’ve found an uncomfortable amount of parallels in the political activism world to CancerLand. The drive to “be positive”, to use “fun” activities to get attention, for starters, are the same. And like in breast cancer, my point of view is: nope, this is horrible and we should shout out our anger. I’m not good with the “attracting more flies with honey than vinegar” thing. (Attract even MORE flies with shit, just saying.)

But the thing that has been knocking me for a loop lately is that even though I think nearly all is lost, I still get up each day and “fight”. I tweet, I go to meetings, I stay informed, I trained to be an official voter registration person—though I’ve yet had the free time to do an event. I have a murky relationship with hope, so I have no idea how or why I keep on keepin’ on—because I’m not sure it is hope that I have, exactly.

It is the same with this whole cancer advocacy thing, I guess. I still write this blog, though it may be sporadically. I still “believe”. Well, believe is a strong word. Maybe, more like….I am still willing to bang my head with a 2×4, in the hopes cancer culture will change, than all the things I find abhorrent—the forced positivity, the warrior language, the celebrities, blah blah blah—will if not disappear, will cease being the dominant narrative.

I haven’t been good at activism or advocacy on any front lately. Too busy, too scattered after the dumb car accident, too jittery. Too tired—always. I go to my “safe place”, I watch cat videos—the REAL reason the Interwebz was invented. I slowly get better. I get back at it.

No, no one can mistake me for an optimist exactly. But something forces me to continue trying. Probably the same thing that made me a cynic.

Note: Spoonie theory.

Ass U Me

The universe tried to remind me of something last week: people like to comment on a situation, with an air of expertise, and they know NOTHING about that which they speak. Dear Universe, please, a less drastic reminder.

I was in a severe auto accident a week ago. I follow a local newspaper on Facebook because it helpfully posts accidents that clog up traffic–so I can use alternate routes if possible. This time I was part of the clog–tho I was NOT the cause (more in a minute). I noticed 18 (!) comments on the post, and wondered what on earth people could have to say about the situation. Ha! Things like, “that intersection is awful”, general derision about the state’s inability to reduce the accidents, and my favorite: “stop tailgating”.

All the comments are true; the intersection known as 5 Points (because it is a 5 way intersection, not a normal 4 way intersection) is a mess and the site of numerous accidents, and not just in tourist season. And cars do tailgate and get stuck in the middle and cause gridlock. But none of these things applied in this particular accident on Wednesday afternoon. Here’s what REALLY happened:

I was heading south on Rt 1 around 12:50 PM to pick someone up from an appointment, and was not using my own car for once. Traffic light was green and there were no other cars along side of me–highly unusual in that dreaded intersection. As I rolled along I noticed a car coming at my left. It seemed to be speeding up, NOT slowing, as it should’ve been. I started to brake, looking to see if I could swerve to get away. I was angry and scared, what the hell was this car doing, coming at me like that?! Next thing I knew I was spinning, I was being shaken, loud crunch, loud pop of the airbag as it whooped me upside the head.

The 2 kind men who pulled me out of the car filled me in on what happened, on what I could not see. The driver of the other car was sitting in the middle of northbound traffic, impaired/asleep/something and people had been honking horns at him. He came to, and just slammed on his accelerator, right into me, and then into another car heading east, as he had been heading west.

I don’t know why he was unconscious in the middle of traffic, and it doesn’t matter, ultimately. Point is, it was the main contributing factor in the accident, and it could happen at any intersection. Just like other locals, I moan about 5 Points and the poor driving decisions made there by frustrated tourists wanting to rush their vacation, or other laborers like myself, just trying to not be late for work or appointments. Numerous accidents there compile a bundle of stats citizens use in their attempts to get the State Highway Administration to take some action. I joined that stat pile I guess, except the idiocy of the intersection’s design really, really, made no difference this time.

Yeah, that tire can’t be put back on–the rod is broken, the brake line, all of it, just, severed.

I wanted so bad to jump into the comment thread and ask these people why they assumed various factors (and what happens when we assume–hint, look at post title). The newspaper’s post was short on details–it merely stated it was a 3 car accident, traffic clogged–maybe use a different route if possible. It did mention that one person was taken away via ambulance, it did not specify which person. I could tell them it was the driver who caused the accident. I had no detectable injuries. I still do not know what is going on with him. The car I was driving is damaged beyond repair. The pics of the damage are scary enough to make me realize if impact had occurred a millisecond different, things might have been disastrous for me indeed.

I sit here a week later, reviewing, finally emerging from a state of shock or stun, wrapping my head around it. Yes, I did attempt to go to urgent care later that day, but I had no visible problems and the facility I went to would NOT treat any head injury (mainly my ear hurt from the air bag). Hell yeah I was super sore the next day, but that cleared up within days. I’m still shaken, but I cannot afford to be jittery about it. I avoided the intersection for a couple of days, but my job requires travel through that area multiple times a day, so I had to get over myself. I’m not saying I didn’t curl up in a ball of fear for a day–that did happen–but it’s fine now. But I couldn’t help thinking about this, ummmm, shall we call it Instant Expert Syndrome?

Haven’t we all been through this as cancer patients? Especially with all the awareness now–this awareness that doesn’t lead to education and understanding? Lung cancer patient? Yep, people ASSume a smoker, because they’ve been told for years about links between smoking and cancer. So they cannot imagine other scenarios, that non-smokers can get lung cancer too, for instance. Any gyno-type cancer? Yep, the ASSumption she didn’t get pap smears, never mind that particular screening method is NOT for ALL the cancers. And the biggest ASSumption, that is my personal bug-a-boo, the conflation of screening=prevention. That somehow, it is a patient’s fault they got cancer if they did not do regular screenings. Or didn’t get a genetic testing (see all the judgement flung at Jolie a few years ago–ugh, I cannot revisit it, too awful). A few facts have stuck in people’s heads and they are unable to imagine OTHER factors, that they often do NOT know the whole story. And slogans like “screening saves lives” confuse people to the point they think “screening prevents cancer”, and we know that is so not true.

Now, here’s the part when a reader would say–who cares what other people think? True, I kind of don’t care what others think–about the car accident. I know it wasn’t my fault, and telling people crazy accidents happen at ANY intersection, even the most well designed, won’t make any difference. Not my job to warn people about it–that is what driver’s ed is for.

But I am re-committed (again) to trying  to educate/advocate/make-people-understand various facts about cancer. I’m tired of dumb stigmas. I’m tired of awareness without understanding. Again, er, still. So, still, I will continue to make others understand the reality of cancer, not the slogan version, to which they bring those incorrect assumptions to fill in the blanks of stuff they don’t know. Because, clearly, that is what humans do: create a story based on a few details–and are so, so wrong.

Epilogue:

Other fall out from this damn accident is me having to grapple with something I have submerged all these years away from DX–this need for safety, security, routine, predictable days. I’ve never been particularly  adventurous or a risk-taker. But after treatment, I just wanted nothing big to happen to me ever again–even something good if there could be a “trade-off” of no bad big things happening to me (I know that isn’t how it works, I’ve written posts about that). I just wish…the Universe hadn’t clobbered me again last week.

Your Phrases Are Problematic

I’m so behind on everything. I started this post when I listened to a podcast that was over a week old—and that was in the first week of the year. It was one of those year-end specials, about the most hated/loved words/phrases of the year. So, yeah, I’m writing a post inspired by a year-end list about 2017, more than a month into 2018. Good grief.

I like segments about language; I guess it’s just the old English major in me. I was walking along and chuckling when the host and her guest started in on how much they hate words many of us in CancerLand use: Narrative and/or My journey.

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In the process of making fun of the phrase “my journey”, the host and guest did poke fun at what I—not they—would call “disease culture” (is that a thing—and BTW “a thing” was also a hated phrase of 2017). They poo-poo’d the over-dramatic element by invoking an imaginary patient “on their psoriasis journey”. Yikes! I don’t know if they got any backlash  from the psoriasis community, and if they did, they kind of deserve it. I mean, yes, I got the point, but it was a bit tone deaf. Or maybe I’m just a bit sensitive to this sort of thing.

Now, I’ve complained about words and phrases in our little breast cancer culture my own self (see Some Word Problems). And I’ve said a few times here and other SM platforms that I dislike “my journey”. I try not to trash it too much; I know others like the phrase. I definitely use the phrase “dominant narrative”. Why? Well, because it is easier than saying what I really mean: that rah-rah, sappy, personal tragedy-to-triumph story that has become such a cliché when reporting on warriors gonna-beat-this-thing-while-smiling-and-wearing-feather-boas that all TV and media seems to think ALL breast cancer “survivors” embody. I mean—look at the sentence I just wrote! Hell yeah I’m gonna say/write “dominant narrative” and I know everyone will know exactly what I mean! Ugh!

At any rate, this podcast made me feel a little weird. You know, that odd defensive way, when you feel allowed to shit on something that is YOUR thing, but when others do it, you go crazy defending that something. Like, I poke fun at how rural and redneck my town is—but I get VERY offended if anyone from ANY OTHER place in the world says the same thing. You know what I mean. So, I didn’t like that these podcast hosts were poking fun at “narrative” and “journey”. What right did they have?! I was indignant!

In fact I have to make a strange confession here. I roll my eyes all the time on this blog (for how many years?) about all the pink and the breast cancer culture, and the over-bearing-ness of it all. But I get mad sometimes when people with other cancers do it. You can see that anger a bit in some old posts. It’s like, why has breast cancer become the scapegoat? Of course I know damn well why, but, still. I’m sure what really bugs me is a suspicion that those doing this scapegoating assume ALL of us breast cancer patients are full-on embracing the pink madness. It is a common mistake I see often.

Whoops I rambled off there.

So what is to be done about the overuse of “narrative” and “journey”? I honestly don’t know. It’s a shame some words get overused, become trite, meaningless. And worst of all, eye-roll inducing. In fact, the name of this post is a re-wording of a book or essay I once read—“Your Fave is Problematic” (I think). Funny thing is, once after I read the piece, I read another piece saying—you guessed it—calling anything “problematic” is, in fact, problematic.

This is quite revealing, isn’t it? Maybe the real problem here is again, information overload. Everything, like the news cycle, is accelerated these days. I love reading books about slang, and I remember being surprised how long some things had been around and were not yet considered overused. I still say “cool”, I probably overuse it, but it seems normal. On the other hand, no one says “daddio” anymore—or do they? Did that get old quickly? I get it, I’m sick of many words and phrases these days my own stupid self.

Now to bring it back to cancer, (because this IS a cancer blog), I cannot help but wonder how many people NOT in disease communities, like the podcast hosts, are tired of the way we (patients of various serious illnesses) speak? I do consider this kind of risky. With all these cancer people, myself included, talking about journeys, will people just stop listening, and our message go unheard?

Even though I’ve been sharing “my story” here on this blog for years, I do roll my eyes when I hear about people “sharing their stories”. Again, it seems so trite. But on the other hand, I’ve become tolerant about “stories” in the last year. I know that “sharing my cancer story” works as I advocate in health care politics. I’ll keep using it, shamelessly. I have to—I’ll do anything to protect my access to health insurance. Otherwise I face potential catastrophe. And why shouldn’t I? Our POTUS, love him or hate him, uses narrative masterfully. This was a key point repeated by pundits and critics after the SOTU speech the other week. In fact, he weaponizes the technique. But I can too.  Stories trump facts most of the time. Anyone paying attention to the ongoing “facts and stats about mammogram effectiveness vs the ‘mammogram saved my life’” saga knows this is true.

I claimed at the start of this post that I like things about language, I have B.A. in English Literature, and heaven knows I’ve screamed at journalists (here on this blog) to come up with a better way of announcing celeb deaths than “…lost his/her battle with cancer”–it is their profession for crying out loud! So surely I can come up with a better way to describe all these words—my story, my journey, my narrative—that I use to counter the “dominate narrative”. I will give it a little thought, but not much. Because I have too much work to do—telling my story, so I can challenge, and hopefully change, the dominate narrative.

It’s a real journey. Ha ha.

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 

Louder Together

In this last few hours, I implore all to spread the word about our #CancerRealityCheck Thunderclap. And to participate in the Tweetstorm for the hour after the Thuderclap (details below). The more of us speaking up and out, the more likely we’ll be heard. Global stats about cancer deaths are staggering–so many of us have cancer! Think if we all spoke up about that reality!

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I know, it will be on a weekend, things are going on. Personally, as an American, after our storm I will be all #FlyEaglesFly. So, please, just take this one measly hour to tweet about the realities of your cancer experience.

Here are the details:

Sign up for the Thunderclap to take place on Sunday, 5 Feb (4 PM in the UK, Noon Eastern US, 9 AM Pacific US times). Tweet your experiences the hour after the Thunderclap, using #CancerRealityCheck.

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!

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We(@bccww & @abcdiagnosis look forward to reading some great tweets!

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.

The Cancer Curmudgeon Versus Snow: A Saga

Followers of my Facebook page will know I occasionally post harangues about an impending snow event. From 2 inches to 18 inches, doesn’t matter—I WILL complain. It wasn’t always like that. So what changed? Oh, in case you are wondering what this has to do with cancer, or my experience, bear with me, you’ll see.

Ocean City, Maryland, The Pier

Once upon a time, this beach bum liked snow. A true Atlantic/beach girl/Southerner, I knew that a couple of inches would close the schools—thank goodness. Northerners will never know the utter relief that comes with the gamble & pay off of NOT writing your big paper because of a snow forecast, and having that pay off of one extra day, that “Schools are Closed” day, to finish the paper. #ProcrastinatorsUnite. (Like you didn’t know I am a big procrastinator, please, look at this blog.)

A true book nerd/future English major, I also loved the romantic aspect of a snow day. The fact that I could stay inside, sip hot chocolate and read, watch old movies, whatever. That silly notion persisted through college days too. I even held onto the fantasy a little after joining the Real World. I embraced the idea if the world would just slow down for a moment, because of weather, I could catch up—read all those books I bought to “read later”, organize them, etc.

It’s not that I was completely unaware that people had jobs that meant they had to go out in the elements; I just thought I’d wind up being a writer, and I’d live snug in some apartment and could choose not to go out. Ah, being a slacker in the 90s while I was in my 20s was such a great innocent time.

But reality crashed and I had to drive in one too many bad situations only to have the store I worked in close after a few hours—a waste of a whole day. Maybe I was paid for the whole day, even the time I didn’t “work”, except the time I spent cleaning the car, driving, sliding uncontrolled into ditches, that time added up, and my resentment grew.

The pinnacle was the winter before my diagnosis. I worked at a non-profit and it had yet to enable us to work offsite. I drove several miles in a State of Emergency, passing a number of car accidents, to declare conditions too ridiculous to be open. And drove back home. And inevitably some fool complained a few days later—claiming their free off-of-work day (that they had because of bad driving conditions) meant I should’ve been working to take care of their stupid little problem, via phone, or they ignored the driving restrictions to annoy me in person. (Around this time I realized working in non-profit was just as disheartening as working in retail—because, assholes exist.)

I remember the times it snowed while I was having my chemo infusions. It’s not like I could stop those early; I needed the full dose, and then my ride had to deal with the shitty driving conditions. I don’t have digital copies of the pretty pics taken at the beach while I was in treatment—I remember taking the photos, trying to capture a moment even while too sick to be outside for very long. I’d like to share them here, but I’m not sure where they are. I might have trashed them—I went through a phase of destroying all physical memories of my time in treatment.

Now that I’m a pet/house sitter/self-employed/small business owner, I absolutely loathe the snow. Lost work days=lost revenue. Work days in snow are more physical labor, and labor is hard post-treatment, you know that. Work days in the snow means everything takes three times as long to accomplish. I’m already pressed for time to devote to reading/writing. This most recent storm, combined with my most recent killer cold, has been a huge imposition for me.

And of course, yes, I am mindful of the people who have to work in this mess. But more importantly, every time it snows like this, I see closures of local cancer treatment centers. I understand why—we are a beach area, there are few snow plows on the road, even now, several days later, some roads are truly impassable. Even today I skidded on a few side roads I use. So some cancer patients in rural areas simply are not going to make it to chemo, and some nurses cannot make in to work. To say nothing of dialysis patients, of patients with a million other concerns, who have to delay an appointment, to have to wait another horrible 24-48-72 hours for test results. Awful. I remember the snow while I was in treatment, I shudder, a particularly awful memory in an already awful set of memories.

But there is a deeper thing here to reveal about myself, this Curmudgeon. I am a cynic, I do not deny it. In fact I am slightly proud of it. But what is a cynic? Nothing but a (bitterly) disappointed romantic. I am sure I annoy many with my habit of always pointing out the bad stuff in a situation.

But that’s only because once upon a time I looked at the good in a situation first, and I’ve been disappointed bitterly too many times. If you really want to understand how the Cancer Curmudgeon comes to any cynical POV, look no further than this story.