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.
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!
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!
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 #BreastCancerRealityCheck, 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 #CancerRealityCheck 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 #CancerRealityCheck 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.
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.
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.