Sorry it has taken a while for me to respond to your question. I think you wrote me while I was on a week of Temodar and was feeling EXHAUSTED. I am sure you understand.
You asked me about tips for meeting other brain tumor survivors via social media. Hmm… there is no quick and easy answer for that. In order for me to explain let’s pretend we aren’t talking about brain tumors. Let’s pretend we’re talking about something easier to understand and relate to… like dogs.
I have a dog and I really like talking about my dog. I want to meet other dog owners and get together and talk about our dogs, share dog tips, and hear their stories about dog training. What do I do? I go to dog fan web sites. I might join a dog walking club. I might go to the dog park. I will search the Internet and create accounts on web sites with dog-related message boards and get a conversation going. If I have a lot to say I may decide to start a blog about my dog. After I write a number of blog entries I will e-mail the dog blog link to my friends and family and they might share it with other people. If I start using keywords in my blog titles and entries like “cocker spaniel games” or “beagle training”, search engines like Google will find me when people search for related content. Soon I start getting new beagle owners coming to my blog who are looking for ways to train their dog. If I am feeling really adventurous I might start posting/linking to my blog from my Facebook page so my friends and family will see that I have posted a new entry. Other types of social media (like Twitter) also make it easy for me to notify my followers that I have a new blog entry (without being intrusive, like how e-mail can now be at times).
So I just said all that using a hypothetical situation–being a dog fan. Now let’s apply that to brain tumors.
I have brain cancer, which puts me in a unique/weird position. I know my friends and family want to check-in on me but aren’t always comfortable about asking me how I am doing. So I start a blog/journal that they can visit whenever they want to hear about my status. But that fills THEIR needs. I have needs to… I want to connect with other brain cancer survivors.
So I search the Internet and find that there are many places for me to connect with other cancer patients (Brain Cancer message board at www.cancer.org), young adult cancer patients (www.planetcancer.org and www.stupidcancer.org), and people with epilepsy (www.patientslikeme.org). Of course, with all these web sites you have to create a user profile and in my profile I mention that I have a blog. Over time people end up coming to the blog and become regular readers that I correspond with.
On occasion I attend a local brain tumor support group and meet people in person. At support group meetings you can “network” with other patients and tell them that you have a blog. You can write your web address on a piece of paper and share it with them. Actually, all my doctors have permission to share my blog with their patients and when I come in for check-ups they tell me about how my blog helps people. That makes me feel neat!
It was at a National Brain Tumor Society event that I found out that they had a peer support network. I said, “I want to do that!” And so I called them. After signing up for that I told them I had a blog and they started reading it too. (That’s how I got my interview on their site.)
Keep in mind that social media is a two-way street. I also read the blogs of other cancer patients (I follow blogs about other topics too, but I am trying to be specific here). About once a week I check in on Erin, Brett, Kent, Jaime and David. There are others, but I am more likely to go back if the author posts often (at least once a week).
Not all this stuff happens over night. Social media is just another tool in the networking arsenal, and it can be used for whatever your interest may be. But what is REALLY cool is that people like us–unique patients–now have a way to find one another.