I know my limitations. I have learned that lesson. I learned how to say “No” so I can save my energy and my sanity. What I still struggle with is how much I hate it.
I WANT to do things. I HATE that I cannot attend that meeting, commit to that protest, go to that event. I am struggling against both regular aging and cancer-induced aging. There is so much I want to do, and I cannot do it, at least not to a fully invested ability. Half of a Curmudgeon is really no Curmudgeon at all.
OK I cannot blame this ALL on cancer. Some of it is my gig-economy lifestyle. If I don’t accept a gig, I don’t get paid, and I NEED to get paid. The cancer part comes in where I get tired all too quickly. I know my limits—I get up between 5:30-6:00 AM and I don’t have a brain at 7:00 PM. If there is a meeting I want to attend via Internet, I have to take a nap or adjust my manic daily activities—I morphed into a morning person and get most of my shit done early in the day. But it is not always the case. I ration out my time, my attention. I will attend a meeting in a few days and I have CHOSEN to do this. I have adjusted my schedule and will sacrifice a few things to attend this meeting—a meeting in which I hope to propose solutions to make my political active life a bit easier. But while it may seem like a smooth rearranging on my part—what lies behind that is all the angst I had in making choices, in figuring out my plan. It might not seem like a big deal to some readers, but to me, cutting 2 days of work is 2 days lost income. Travelling 80 miles out of my way (40 miles 2 times) on a 14 year old SUV approaching the 200,000 mark (while making an awful noise), that is trying on my nerves. I cannot afford to just up and get a new car, though I seriously need to do that.
Like I said, I hate my limitations. Not all of them are cancer-related, at least not directly. I mean, some of my financial woes is because I wiped out my savings buying insurance before the ACA kicked in. I had to buy insurance because I could no longer handle working in my 80-hour work week job after treatment. It all really does come back to the cancer, see?
There a million things I want to do, a million issues I’d like to comment on. But I am tired. So tired. I am limited
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I am again on tenterhooks today, like many others. I even saw a think piece about how this election is a little traumatic for those who thought Clinton would win and woke up in a nightmare world 2 years ago.
Obviously, I haven’t written here as regularly in the past 2 years as I did before. Much of it has just been the frustration I’ve often expressed: been there, ranted that. The same breast cancer culture shit keeps happening, why bother write a new post when I have an old one I can just re-share? I mean, really! But I’ll admit a large chunk of my silence on this here blog has been my inability to keep politics out of my writings, and the constant low-grade depression I’m in…and most of all, an inability to keep bitterness and near hatred in check.
The day after the 2016 election, the thing that upset the most was how deeply conservative my region had voted. It made me glare at people in the grocery store—because all I could think was, “YOU! YOU are the one who thinks it is OK for cancer patients to go bankrupt and die because you hate the ACA”. I hated everyone around me. I’m not sure I’ve admitted that on this blog before, but it’s true.
I’d like to say I’ve grown, calmed down, but I have not. I got involved in a few groups, but now am really only still involved with my local Indivisible group. Because I work far from where I live (and vote), I handle social media aspects rather than the in-person actions our group takes on. So that means I live in the sewage of political Twitter more than I’d care to. Yes, I could choose not to—but I want to “do something”, so I do the thing I can do. I admit it has not been great for my mental health. Right after the election I was involved in airy fairy things like bridging divides, trying to have meaningful conversations with those whose views differed from mine. I no longer care. I’m simply not interested in wasting time with “agree to disagree” conversations. I’d even say I’ve been pushed more to the left than I was before—not by exposure to the far left, but by the opposite. There is only so many times “libtard” and “snowflake” can be lobbed at a person—it takes a toll.
Look, I hate the division in our country too. I hate the way the media portrays this all like it’s the SuperBowl or something—this is not a game, it is my life and pursuit of happiness. Well, look at that, I found one thing I can agree with Trump rally attendees on: CNN does indeed suck! But I cannot find common ground with someone who thinks so much of what has happened is permissible (not even going to list all that stuff). I was shaken to my core checking something on the Countable app the other day—other users post their opinions on the bills Congress is voting on. Someone simply said, people with health problems should be required to pay more—full stop. It’s this weaponization of those “Did You” questions that I feared. When I first wrote that post, it was merely just a gripe, knowing that people asked me those questions because they wanted to believe they were “safe” from getting cancer—it merely had to do with fear and a sense of control. Now I know they ask those questions because if they can believe I caused my own cancer, I can be punished for it. While the ACA remains law as I write this, I can still say MOST of my fears came true since November 2 years ago. I feared this would happen. I have no desire to engage with someone who holds this view of me.
As a cancer advocate here, I’ve often thought if we only shared the truth and reality of cancer, people would begin to understand. I cannot say that drove me to write my posts—I mostly wrote for an audience that did not need persuading—this was a place for others to come and feel relief that they felt the same way and that it was OK. I understand that advocacy requires more outreach, more appealing to empathy in others. I cannot say I’ve believed in that this year. I keep trying, I keep putting things out there—to show: this is what is at stake in this election. But I don’t have much confidence in the outcome.
Ugh, this is NOT my version of Trump’s “American Carnage” speech, though it feels like it, amiright? I refuse to pay attention to exit polls or any polls—I think most people feel that burn too. I write I guess because I am trying to muster up some hope today. But as my usual curmudgeony self—I’m girding my loins too. I never again want to experience that gut punch like with cancer (you know, how it wasn’t all pink fun and games like on TV).
I’ll watch and wait today. Then I will pick myself up tomorrow and continue this particular battle (yeah yeah, I hate battle metaphors in cancer—but this voter/political activism thing, yeah, it might be a bit more war like).
Here is an experience I had back in 2005-06 that I keep reminding myself about, (on REPEAT):
I worked at a non-profit, running many monthly outreach film-based programs. I had a kids’ film thing at a local library. I used money from my budget to create thousands of paper(!) flyers for local elementary schools to distribute. I spent time convincing school officials to let me distribute them (each month–for some reason the permission didn’t stay in place), then getting the flyers to the schools. All this for just ONE of my several monthly events. I would get about 10 to 15 kids and their parents to attend. After a few months of what I considered out-sized effort for such ridiculous results, I stopped using the money and the time for the advertising efforts. After that, I think I got maybe 1, or 2 kids, to attend. Moral of the story: it takes A LOT of advertising/screaming-into-the-void to get even a little bit of attention.
I keep reminding myself of this frustrating episode from my life, over and over, lately. As I’ve pointed out many times here, I haven’t had time to write my own blogs, read others’ blogs, or participate, even a little bit, in the cancer community in which I was a minuscule, fringe part of in the years since I began this site. I don’t have the spoons, the emotional bandwidth. I think I popped in on Twitter a few weeks ago and found someone wondering if there is a hierarchy in cancer, and I just….navigated away. I’ve written about it extensively, others have written about it over and over. It’s not this person’s fault, they are likely new-ish to cancer, waking up to things I realized in my progression out from the first confusing years of treatment and moved on to dealing with aftermath. But I just get frustrated that we cannot move forward (see most any blog post I’ve written in recent years).
So I think back to my story and remind myself, with gritted teeth, that it takes mammoth effort to move forward even a millimeter. In fact, I repeated this story to someone involved in local politics, and I will tell this story in a speech I have to give in a few hours to local political activists.
Why do I tell this story here and now? Well, you might have noticed that we did not have a day set aside this Pinktober for #BreastCancerRealityCheck. It’s still going on, we still encourage everyone to use the hashtag. Primarily, we were unable to create a Thunderclap–the site was just not there. I personally was unable to get any of the comparable platforms to work (they kept kicking me out). Without that Thunderclap, and a concerted effort to get people to REALLY use the hashtag around the time the T-clap happens, well, I’m not seeing much use. Heck, I’m not even using it much. I’m having too much car and computer trouble and have been so distracted I don’t do more than the bare minimum of my volunteer activities.
Then I opened Twitter upon waking up on Saturday and saw No Bra Day trending. I know that the algorithm picks things it thinks a user wants to see–but I wasn’t even using my @curmudgeo account, I was using one of my political accounts. About an hour later it wasn’t popping up on any of my accounts, but my FB feed was full of outrage from my friends who hate the day. I toyed with re-posting my own screed against No Bra Day, but within seconds went into my “why bother we never move forward no matter how hard we scream” mode.
Earlier this week I stumbled across this picture and Banksy quote. I generally roll my eyes at inspirational quotes, but I liked this one. (The art is not Banksy’s, and the argument around even that, where I found the pic, just made me tired).
I’m not exactly resting right now–I cannot. I have too many obligations (not here in CancerLand) and too many personal troubles, I am unable to rest. But I remember that I must keep trying. I must be patient. A change in Cancer Culture will take longer than I can imagine. But that doesn’t mean I should just quit.
I cannot promise I’ll be involved as much as I like. As stated before, I’ve said nearly all I have to say about the horribleness that is cancer–I’ve said it repeatedly. But I encourage others to say their truth, their reality. Use #BreastCancerRealityCheck. There is so much bullshit out there–and we need to set the record straight. I’ll try if you try, OK?
Nancy of Nancy’s Point has unveiled her questions for her latest blog challenge (in the past she’s asked us to list 15 random facts and other such things, see here, here, and here).
2018 Summer Blogging Challenge Questions!
(Boldface = Nancy’s questions, my answers follow…)
How long have you been blogging (or reading blogs)?
I started posting a few frustrated ravings in the summer of 2012 (I completed treatment in January 2012, quit my 9 to 5 a couple of weeks later). My first “real” blog here in this spot appeared November 2012.
How has your blog changed?
I write and therefore post much less since 2016. A number of factors contribute to this: I’m more involved in political activism, and well, it is rare an issue comes up (when I DO tune in to breast cancer social media) that I haven’t already written about. Why repeat myself? I’m pretty frustrated at culture’s lack of ability to progress and evolve. I understand part of this is because newly diagnosed patients are all new to this—I remember I didn’t like the pink ribbon crap prior to my own DX, but I didn’t realize all that was wrong with it until then. I’m sure I said what had already been said many times before.
What is your biggest blogging challenge/frustration?
To quote Nancy: time. Oh and spoons—I’m just too anxiety ridden lately and it fatigues me. All I can do when I finally sit down at night is watch cat videos—it’s all I’m emotionally equipped to handle most days.
What is your favorite post that you’ve written (or read)?
My personal favorite, the one I most re-share is “Did You?”
What are your goals for your blog? (Why do you read blogs?)
Venting, therapy for myself—at first. Then I realized others out there felt the same way, so my goal became community, and a source for those who come behind me to see they are not alone (see 2). Definitely NOT advice, I am sooooo unqualified.
How many blogs do you read on a regular basis?
Not many lately. Not enough.
How do you determine what to share and what not to share; in other words, do you have blog boundaries? (or comment boundaries)
At first I let it all hang out there, or so I thought. I’m sure I kept some things back subconsciously. I’m more likely to have stricter boundaries these days due to nature of social media-every opinion gets ripped and I get enough of that in political social media.
When things get hard, what keeps you blogging (or reading blogs)?
Well, I haven’t been (see 2).
What is your biggest Cancer Land pet peeve today, right now, this minute?
What one piece of advice would you offer to a new blogger?
My advice is crap.
Share something most people do not know about you. A secret sort of thing.
I hate talking on the phone because I assume the other person is making bored faces.
What do you enjoy doing in your spare time?
Spare time?! Ha! Well, I will select a special show to actually binge and pay attention to at times. I’m re-watching “The Americans” because it challenged me. I used to be such a film geek, but these days the only thing I will actually spend money at a theater on is a Marvel Avengers thing—just for the visual impact. Quiet indie films I used to prefer can be done via streaming at home to save money. I used to read, but…..I fall asleep when I sit, and listen to podcasts all day. I do try to re-listen to my fave all time book (“To Kill A Mockingbird”, of course) each summer, but I think I’ll miss out this year.
I keep saying I’ll get back to writing blog posts and keep not doing it. I do have 2 rants in my head that maybe I can get done. And #BreastCancerRealityCheck is in the works too. And possibly another thing. I swear! I WILL try to keep in the community.
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.
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.
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.
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.
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.
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.
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.
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.
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.
With a reach of about 9 million, YOU and YOUR wonderful tweets about the REALITY of cancer made #CancerRealityCheck a success yesterday!
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.
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!
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 #CancerRealityCheck on the tweets as this will help to trend – using any other hashtags will diffuse and dilute the message on the TRENDING board!