Patient & Researcher Blog
Here I aim to capture what I am learning as a newbie researcher from a patient perspective.
Living with a slow growing brain cancer
It is taboo for researchers to talk about their work before it is published.
I think that’s a bummer.
My favorite part about research is learning new things in real time. Here I share my observations as a learner and my n of 1 (personal) findings as a patient.
Note: I started blogging about brain cancer in 2008, at age 29.
I had no background or knowledge about healthcare when I began. Please excuse typos and other misconceptions. What you read here is me in real time, like a time capsule.
There are more than 500 posts here. Use this search to look for something specific. Good luck!
Support groups are not for everyone
I realized I never wanted to go to a general cancer support group again. On the way out I asked the social worker if there were any brain cancer groups. She handed me a list of with about 200 groups around the greater Sacramento region. Just one group focused on brain tumors. I needed to head to the Internet to find all of you.
National Brain Tumor Society refers patient support to Imerman Angels
National Brain Tumor Society recently sent an announcement that they will be discontinuing their Patient Line and Support Network to instead focus more on research and public policy. While I am bummed about the discontinuation of the patient support network (as I was one of the support peeps) I totally understand the decision made by the NBTS board of directors.