I started this blog under duress.
Once my friends and family got over the shock of my diagnosis, they started to tell me I should blog about my exerience. Huh? blog? I had no idea how one even went about blogging ... and isn't that a very public thing to do?
I'm private. Not super-stealth, don't-exist-in-cyberspace private, but by modern standards, private. You'll notice in all the entries that there aren't any pictures that identify me, nor anyone else involved in my journey. I'm sure a hacker-stalker would be able to figure out who I am, but those guys can do that if you just have an on-line email account or a facebook account. There's no getting around Anonymous if they want to find you.
So I blogged, discovered it was a good mental exercise, served as a reminder of how far I've come, and I've continued to blog for selfish reasons.
I never expected more than seven or eight people to read this blog, but in December, an email popped into my inbox. Someone was looking for me. Someone from the CERN Foundation. In retrospect I'm pretty sure I found their website when I was first diagnosed because I went to EVERY website Google returned that seemed legit, but when I received their first email, I thought "who?".
The Foundation is committed to developing new treatments, improving the care of ependymoma patients, and ultimately finding a cure. A truly worthy cause. Duly researched, I replied, and thus started my commitment to share my story with a wider audience.
So, welcome to those who have found me through CERN. I am happy to share my experiences, either publicly via comments, or privately via email (intramedullary.ependymoma@gmail.com).
My story may not be exactly the same as yours, but there are so few of us and there is so little real-life information available on spinal cord tumours, I'm glad to be able to offer you some insights from someone who has "been there, done that, bought the t-shirt".
