Wednesday, 27 February 2013

Guest Blogger - Rachel

Rachel is a long term survivor and has been blogging for a number of years, she recently contacted me to ask if I could share her insight on her approach on my blog so without further introductions from me I had this posting over to her.

Blogging the Cancer Frights Away
By Rachel Pappas

When I heard the three dirty words: “You have cancer,” I wasn’t shocked. Two weeks earlier, the radiologist walked into my cubical at the imaging center and threw the “c” word out, while I lay there, staring at the ultrasound screen. Days later my breast surgeon reconfirmed the probable writing on the wall as she stuck me with the biopsy needle.

By the time the official call came, I had myself diagnosed as a gonner—I'd had far too much time to spend on the Internet, and the data floating out there rocked me. Does it help to read for a third or fourth time: “carcinoma associated with poor prognosis”? Do we need to read sterile-sounding clinical-ese that we don't understand beyond that it has freaky vibes? What does it do for us to sweat over five-year survival rates? And FYI if you don't know yet: these numbers are typically based on 10-year-old studies.
I moved past surgery, still frozen with fear. But it started to thaw, slowly, in the chemo suite.

Who would have thought sitting with a bunch of bald ladies, attached to a fluid-filled bag for a few hours, would be my happy time?

But as we shared our boob-related jokes and PBJ sandwiches, I didn’t just see a disease. I saw moms. Teachers. Funny, inquisitive, chatty human beings. We started talking about anything but cancer. Though sometimes the conversation went back to the monster. We talked about what to say to our kids. Where to buy cranial implants (aka wigs). How fricking scared we were when we first got hit with the “You have cancer brick.”

This is why I decided to start blogging. I remembered how blown away I was when I first got on the Internet as a brand newbie. I thought about all the questions my chemo clique ladies had. I thought about the things that mattered to us now, and about the things it helped us to talk about. I was going to create a safe, happy place.

When we first hear we have cancer, we need the positive—we need it right then.

And we need it for the rest of our lives, because life’s never the same again.
Being a 20-plus-year health writer, I had my work cut out for me when I launched my site. But I still had lessons to learn because I needed to know how to only do the positive. I had to figure out how to not overpromise, to be real and informative—but still be comforting, even funny. How do you find this kind of happy fodder EVERY SINGLE WEEK? I mean we’re talking about cancer!

But as I put my feelers out, I found it was out there—tons of it. Stories to tell about cyberspace friendships that it takes an experience like cancer to understand and embrace. Stories on retreats where survivors do zip lines, paint, dance, laugh and cry together. Stories on ways we can care for ourselves moving forward (there’s so much our docs don't tell us.) Other survivors’ mountains, and how they’re taking them on.
Call me selfish, but I blog as much for me as for you and whatever warriors stop by.

I use it to keep me straight. How can I write about what good eating and sleeping does for us … how can I ask people to open up to ideas like guided imagery and wacky sounding concepts like laugh yoga unless I try them myself?
Then there’s the inspiration I get from the others. The ones who are in a hard place, but not giving up, still looking for what will help them beat this monster and or live as fully with cancer as they can.

When I see the flurry of clicks on my articles on end of life care, or managing metastatic disease, it breaks my heart, but it lifts me too. I am reminded, I had cancer, but today I am in a better place than so many. Still, they are searching, connecting, hoping—actually taking the time to thank me—so they are my medicine. All the folks I meet through cyberspace are my lift—no matter their stage or circumstances. We keep on keeping on, together.
Thanks Rachel for that inspiring piece of literature!

I think all of us who blog are hoping it will help some one out there with cancer, even just letting them know you can live a normal life but equally in letting people know you are allowed to feel rock bottom once in a while.

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