Glioblastoma Playbook v2 (Patient, Caregiver & Researcher)

A year and a half ago I published the Glioblastoma Playbook v1, primarily focused on Patients and Caregivers.

An area that I didn’t cover in my last version is how we build a better system to support the patients, caregivers and researchers involved. Professionally I talk about how we can build streamlined feedback loops within businesses, I am looking to do the same here.

Since publishing the first version I met with the team at OurBrainBank, an organization dedicated to Glioblastoma with a symptom tracking mobile app. A fellow care partner, Dina, who was on the call shared the perfect analogy:

“Here’s how I feel about our medical team: our oncologist is playing for the Rams, our radiation oncologist is playing for the Seahawks, and our NO is playing for the Eagles. We lost our offensive coordinator (surgeon) after he called in the play. My husband is the quarterback (GBM warrior) and his helmet earpiece is on the blink. I am trying to be the cheerleader, the water boy, and statistician. Where the hell is the coach?”

— Dina, GBM care partner

Consider this to be a quick a huddle for those on the field…

Patients

Take a deep breath and realize this is a moment for your support system to step forward for you, it will be beautiful. There is an army of people and resources with acute attention to this. Some recommendations on next steps based on those who have…