Frequently Asked Question

"So, are you cancer-free now?" No, I'm not.

Why does it bother me so much when people ask me this? I know people mean well, but when they ask it makes me feel like I need to defend myself.

Just because I had two brain surgeries and healed well it doesn't make me cancer-free.
Just because my chemo treatment is in the form of a pill it doesn't make me cancer-free.
Just because I still have hair on my head it doesn't make me cancer-free.
Just because I look "normal" it doesn't mean my brain scans are clean and that I'm cancer-free.

I still go to physical therapy to deal with my balance issues. I still take many pills for epilepsy. I will be on chemo for up to two years. And as much as I read, learn new things, and exercise my mind, my brain scans aren't clean enough to be anywhere near cancer-free.

Brett, Bob, and I have protected everyone we know with information about brain cancer survival statistics because we know that I am not a statistic. But when people see how well I am doing and they think I'm done with this cancer business it makes me mad.

I know--poor me. All I have to complain about is that no one can appreciate how well I am doing. I sound totally unappreciative and lame.

Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
Previous
Previous

Let the chemo begin!

Next
Next

Dental dream