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!

Surviving, Most Popular Liz Salmi Surviving, Most Popular Liz Salmi

Does a brain tumor diagnosis mean you are disabled?

How we deal with our response to the diagnosis and treatment, our abilities or disabilities, is totally up to us. We can't perform our own brain surgeries or invent new drugs and treatment, but we can choose to strengthen our metal state of mind when it comes to our health. At the risk of sounding like a self-help book, it really is all about our attitude.

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Surviving, Most Popular Liz Salmi Surviving, Most Popular Liz Salmi

This is not a death sentence

To those of you diagnosed with a brain tumor–malignant or otherwise–for the love of god (or whatever you believe in), don't tell yourself the diagnosis is a death sentence. Be as negative as you want. Dread the biopsy. Freak out about the brain surgery. Get sick of chemo. But don't tell yourself this is death sentence.

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Surviving, Advocacy Liz Salmi Surviving, Advocacy Liz Salmi

What would you say to the most influential people in the brain tumor community?

I am struggling with what I should say. I don't want to preach to the choir. They already know we need more money for research. They know oral forms of chemotherapy aren't equally covered by all health insurers. They know there are more than 130 different kinds of brain tumors and that brain cancer is the #1 cancer killer in children.

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Surviving, Patient Blog Liz Salmi Surviving, Patient Blog Liz Salmi

Neuropsychological testing

Neuropsychological testing can help doctors find out how damage to your brain may be affecting your ability to reason, concentrate, solve problems, or remember. A doctor may suggest this type of testing if you have a disease that can damage the brain, such as Alzheimer's, multiple sclerosis, dementia, Parkinson's or a brain tumor.

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Surviving Liz Salmi Surviving Liz Salmi

How to participate in the #BTSM tweet chat

#BTSM is a patient-run, Twitter community and is not owned by any organization, nonprofit or otherwise. We are for patients and care partners, by patients and care partners. Use the #BTSM hashtag anytime, and join us for a live Twitter chat on the first Sunday of each month.

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