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!
So, I accidentally attended a national meeting 14 days post brain surgery
It was nobody’s fault. if anything, it was a perfect storm. I was excited to listen to the patient perspectives on research section of today’s meeting, convened by the NCI Patient Engagement in Cancer Genome Sequencing Network. I was supposed to be in “listen only” mode, and no one was expecting me to comment since I just had brain surgery 14 days ago. But the moderator asked me for my thoughts on a topic; I paused and didn’t know what to do. No one said anything, then the moderator again asked what I thought. Well, ugh, I thought, so I unmuted and turned my camera on to attempt to answer the question.
The other shoe has dropped: I am having brain surgery again
Plans are in the works for me to have my third brain surgery sometime soon, likely in the next few weeks. Definitely in October 2021. It has been 12 years since my last.