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!

brain surgery Liz Salmi brain surgery Liz Salmi

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.

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