To share or not to share. I've struggled with this from the day we got the diagnosis. How much do you share about what's going on, and with who? How much do you share about how you're feeling and with who ?
Close to home there is the whole thing about protecting the people you love most from ugly stuff. Madé and I agreed early on that I shouldn't hold anything back, that we should discuss everything openly. We're also being pretty open and honest - to a point and to the extent that they can understand it - with the kids. My folks also stressed that they want all the details, unvarnished.
It gets trickier when you broaden the circle, especially when we have both family and friends, some very close to us, spread all over the world. In the early days we were getting sooooo many questions via email, SMS and calls that we knew we had to do something. We debated using a Facebook group but, I don't know why, that didn't seem right for us. Instead I opted to create this blog for that purpose, initially set up with password only access.
Then a new dimension was introduced. Several friends and co-workers kept suggesting that I try and find the good in the situation, that I should try and help others. I struggled with how to do this initially but after several people sent me private messages asking for some information I'd gathered on a few cancer topics I realized that I might be able to help folks just by sharing my treatment details and some of my own personal research. I figured I'm not exactly posting hyper sensitive stuff here so I added some of my own research notes (which I'm adding to weekly) and removed the site password.
Then I tried something which I'm still deciding whether it was the right thing to do. Again, with the "try and find a way to find the good in this" logic I experimented with a post on Medium, my 1st ever. Basically my pitch was "hey folks without a life threatening disease i.e. me a month ago, wake up and smell the roses - make the most of life". That went a little crazy and was a lesson in how the internet works. The Medium post was mentioned on my Linkedin & Twitter feeds because I'd linked the accounts and overnight it was shared more than 20k times. Within two weeks the post had been read 200k times - so much that another publication asked me to comment on it's popularity. Then a bunch of other publications around the world started writing about the post without even asking me. As I write this at least 10k people a day are reading it. To try and slow it all down I turned off my Facebook profile and made my Linkedin profile private.
But something pretty magical happened. First I got a lot (hundreds) of responses like this:
Scott, I'm not connected to you nor have we met but this story has moved me completely. I am literally sitting here in tears. Your words have had a profound impact and from this day forward I'll be getting regular health checks, abusing my body less (shitty foods and booze), getting fitter and seizing the day with a pep in my step from dawn to dusk. I'll cuddle my kids just that little bit longer and tighter, I'll whine less and I'll love that little bit more. Thank you for wearing your heart on your sleeve and sharing the story with the world.
...which made me think it might have had some positive impact.
I also got inundated with some amazing, very practical advice. Sure some of it was a little misplaced / dodgy, some was completely insensitive, but on the whole I learnt a huge amount from other cancer patients, survivors or their loved ones. I've even set up calls with some of these people. It's been really fascinating.
I don't really feel qualified to be some kind of spokesperson for cancer sufferers, or a variety of life guru. For that reason I've tried to dampen the whole thing down. But it has left me thinking, what is the right thing to do with this ? Could I somehow be helping other people ?
Anyway, maybe something to think about later, right now I've got other priorities...and I won't be doing any more Medium posts !