Saturday, July 19, 2014

My use of Twitter

Firstly. A quick update on clinical trial MLN 0128 for those (including me) who keep track of things like that.

I’m almost through week 2, cycle 4 and the toxicity has definitely reared an ugly head. I would hate to have to stop the clinical trial because of toxicity when the drug seems to be working so well. Scans in two weeks will be the proof of that.
I can easily deal with mouth ulcers and nausea but unpredictable diarrhea and vomiting make it difficult to go anywhere and get work done. So far, I have been prescribed drugs to deal with both - with some effect. I have good days and not-so-good days. Next week, I am off to San Diego for Comic-Con with my daughter. I mean, seriously, how is one to live life furiously in the bathroom all day?

I love Twitter.

This blog was inspired by Marie Ennis-O'Connor @JBBC who tweeted about the power of the #narrative. This is my Twitter story.
I have had a professional Twitter account that I have used to exchange information for years. I opened a personal account to explore my many interests. Just because a stage IV diagnosis occupies so much of my life, it does not mean that I am ready to make it the center of my life. Twitter gives me a chance to interact with others who understand my situation and it links me to the stories of those who have different, often more difficult, lives. It is a source of information and encouragement.

Consequently, I follow interesting, inspirational, and amusing people and organizations. The examples below are just a few examples from my recent Notification page. I like to follow those who make me laugh (Sarcasfun@sarcasfun, Matt Harrison @TioMatteo), those who are caring (Matt Harrison @TioMatteo, CHERYL MCDANIEL@MCDANICS ) and those who are going through a similar situation (Jo Taylor @abcdiagnosis , Susan Rahn @Stickit2Stage4, summar_breeze@summar_breeze).

I follow topics that interest me, such as, technology news (CNET @CNET), video (wolfkrow @wolfkrow ) comics ( wunderman comics @WundermanComics), books, movies, more comics (The Fitzroy@The_Fitzroy) and health news (Yale Cancer Center@YaleCancer). I follow those who encourage and inspire (Inspire @teaminspire, Wisdom Way@wissssdom). But let’s face it, there is a limited number of quotes you can read a day. I prefer people who “do” rather than talk.

I have had enough conversations about following back to know that some people have strong opinions.  I don’t. I think it depends on whether you think Twitter is a broadcast or interactive medium. I follow back if I think I will be interested in reading the tweets unless this just seems to be a game of let’s follow each other and boost our mutual number of followers. If I follow someone, I read their tweets though I may block retweets if they seem to be unable to filter their retweet buttons. If I do not find their tweets interesting, I unfollow them. Simply following users so that they will follow you back seems like a rather pointless game.  Why would I follow thousands? I can’t read all their tweets. If I am going to just mute them, why not just unfollow? Since when did the number of followers become a lame competition? It is for that reason I quickly unfollow anyone who tries to sell me followers or who offers to teach me how to get more followers.

Consequently, I follow people without the expectation of being followed back if they have unique interesting information. My tweets simply will not interest them although theirs interest me. However, I do feel that Twitter is an interactive medium. It’s not like writing a book. If you have a compelling story and if someone is only interested in telling his or her story without providing support to those who are also going through a bad time, that seems a bit narcissistic, don’t you think? I don’t find that acceptable in real life and so why would it be fine in social media? If a book rep came to my door with a list of books to sell and never checked the subjects I teach, he or she would not sell a lot of books.

I never read any promoted tweets and don’t follow anyone who is promoted.

I have no interest in politics but love world news, but I unfollow those who won’t let go of an agenda.

I’m in awe of those who can draw.

I unfollow those who repeat tweets constantly, especially if they are in all caps. I understand why having a mantra is important to get you through a difficult situation but without a context, it starts to sound like a stuck record even if it was initially interesting.

I unfollow those who tweet mostly in a language I do not speak

I never bother with true twit validation.

I find the apps that can take over your account creepy. I should not have to go into the settings to get control of my tweets again.

To those who are listening to me and distracting me on Twitter, thank you. It is not easy to come to terms with the closing circle of life but with your help, it is bearable most of the time. If I did not mention you specifically, it does not mean that I don’t appreciate you. I really do.

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