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!
Breaking down the barriers to clinical trials
We have a problem with clinical trials for people with brain tumors: Not enough people are enrolling in clinical trials, and many trial sites fail to meet enrollment needs required to conduct trials.
Spoiler alert, I'm still alive: 10 years later
I have had a brain tumor for one quarter of my life. I am the same person I was before but I am completely changed.
How I wrote this: My first blog post for a medical journal
The desire for a culture of transparency and openness does not just come from us “sick people.” This is what future consumers of healthcare expect—a group that will continue to grow as people are living longer with chronic conditions and serious illness.
Guerrilla healthcare redesign: Support group materials edition
How might you use your skills to redesign a patient experience?
Empowering patients with a common language for palliative care
Giving people language for self-advocacy: While patients shouldn't be overwhelmed with clinical language, helping us understand what things like palliative care are and are not improves our ability to advocate for ourselves.
Would you take a short-term opportunity in an attempt to change the world?
What would you do, if you were offered a once-in-a-lifetime opportunity that, if accepted, would force you to leave the stability and comfort of an ‘everyday job’ BUT – might also give you the opportunity to change the world?
#BTSM community survey
Please consider participating in the #BTSM community survey. The survey will be open between now and March 6, 2016.
Permission to live: Advocacy burnout
A few months ago I started to wonder if I should be doing all these things I am doing in the brain tumor community. Through this work I am fighting and fighting and fighting. I have been fighting since July 2008, and all of this fighting has taken a toll.
My world is on fire
I was angry about people who are angry about the lack of "awareness" for brain tumors. I get angry that people think our disease is slighted for some reason. The truth is, there are things you can do and you just need to get out there and do something. Let me know if I need to write another tutorial.