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 

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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.