There probably isn’t one specific moment about working at Breastcancer.org that stands out above and beyond all others. It’s more the day-to-day experience of planning and improving our web content — always looking at what else our audience needs from us — and recruiting great experts who can answer those very specific treatment questions.
When I was diagnosed with breast cancer in 1998, I was well aware of what I could not access at that time. Breastcancer.org wouldn’t come into existence for another 2 years. Patient websites and message boards were still a relatively new concept. I painstakingly searched the web for answers and didn’t find many. Finally, I did land on one fledgling website that offered a small breast cancer message board. I logged on nearly every day to ask questions and to look for people whose situations were similar to mine. This wasn’t easy. I was 30, living in a major metro area, and immersed in the 20- and 30-something music and arts scene. People my age had trouble relating to what I was going through, and the idea of finding someone else in my situation felt impossible.
Then, an unlikely miracle occurred. Scrolling through the message board, I stumbled upon another 30-year-old with breast cancer. Her name was Sue and she lived several hundred miles away. I sent her a message and she responded immediately. Sue was studying to become an astrophysicist. She loved hiking and camping, and she was hilarious. It turned out that we had the same diagnosis. We emailed regularly as we tried to mentally prepare for our surgeries. It was strengthening to have her only a mouse-click away as we sorted out our treatment options, got nervous, and became optimistic again. When treatment was over, our communication eventually faded and we returned to our respective present moments, but having her there at crunch time had made a huge difference.
I was lucky to have found Sue at a time when online support was sparse. It’s this experience that really drives what I do at Breastcancer.org. I know how critical it is to get answers to questions that, often, only another patient is going to understand. I know how important it is to read medical information that speaks directly to one’s experience in a voice that feels real. I keep this front of mind when we plan new content and conferences. Today, there are tens of thousands of people reading Breastcancer.org’s pages and communicating on the discussion boards every minute. And one thing is clear — this place is very, very alive.
K9Kim says:
First let me say, THANK YOU for doing what you do on BreastCancer.org! Truly, God Bless you!! I can relate to not having somewhere to turn like this back then… I too was 30 when I was diagnosed, only 2 years after you. Sadly, I have been through 2 recurrences in the last 10 years and ONLY just now found this discussion board… I clearly wasn’t looking hard enough and perhaps wasn’t ready to reach out? I’m thrilled to say, the last 5 days have already changed my life because of these ladies on here! My goodness, what I was missing!! So, thank you, thank you, thank you!!
Not sure if you’re the one I would contact about this, but was reading your blog and thought it would be a good place to start and perhaps you could direct me.
The ladies and I on the discussion board have been discussing our disappointment in not being able to post from our iPhones and or Blackberries etc… As you know, so many of us are frequently in and out of the hospitals, our phones are our “lifelines” at times these days and pivotal in our communication with friends and family alike. Is there any discussion on making the discussion boards compatible with iPhones or any other phones for that matter? We can access them to read the posts, we just can’t post a reply. Perhaps an iPhone application like they have for other social networking type of sites? I don’t know how much is involved in doing that, but we would be happy to do whatever is necessary to get that ball rolling.
Thank you so much for your time and hope to hear back from you with some direction on where to go with this!
And again, God Bless you for giving us a voice on here!!
Kim 🙂
Claire Nixon says:
Thanks Kim!
We’re so sorry to hear about the recurrences, but glad you’ve found our discussion boards to be helpful at such a critical time! The boards are truly awesome : )
We’re looking for funding to create a number of applications, including a discussion board app. Stay tuned!
Claire