Every Day Was Glioblastoma Awareness Day
by Florence Wetzel
In late December 2018, my friend Sara suffered a series of unexplained seizures. A month later, following a lengthy brain surgery, she was diagnosed with glioblastoma.
I had never heard the word before. But for the next seventeen months, as I witnessed my friend’s illness unfold, I was acutely aware of GBM. Every day was Glioblastoma Awareness Day.
Sara died on July 19, 2020. After that, I never wanted to hear the word “glioblastoma” again. I didn’t want to forget Sara, but I no longer wanted GBM in my life in any way, shape, or form. I was done.
About two years after her death, still reeling from unprocessed grief, I decided to write a memoir about Sara: our friendship, her illness, my grief afterward. Once again, GBM became part of my daily life—although this time, by choice. Sara My Sara was not an easy book to write, but it was a great comfort to get Sara’s story on the page.
When the book was finally out in the world, I intended to step away from GBM for good. But when other GBM memoirs began popping up on my Amazon page in the recommended section, I was intrigued. Who were these other people who had written about GBM?
I doubted whether I was emotionally ready to read these books. But curiosity got the better of me, and I ordered several for my Kindle. I always read before going to bed, so I began a new routine: read a few chapters from a GBM memoir, then switch to a novel. This helped me avoid getting overwhelmed—a method I recommend for other caretakers who might find these stories heavy reading.
To my surprise, I discovered a rich literary subgenre. Turns out there are many ways to write about GBM, each bearing witness to a unique emotional landscape. Some of the books were even written by the patients themselves. For instance, The Courage to Finish What You Started is a memoir by patient Alex Cooper, published posthumously by his wife, Beth. And Sophie Kinsella’s book What Does It Feel Like? is fiction told from the perspective of a person living with GBM.
Certainly, re-entering the world of GBM wasn’t always easy. But I quickly realized the books weren’t just about GBM—mostly, they were about love. It was also strengthening to see how others had made sense of their experience, just as I had tried to do in Sara My Sara. And with every story I read, I felt more connected to the larger family of GBM caretakers. I was not alone in what I had gone through, and I found solace in that kinship.
Some days are still tough, of course. July 19 is particularly difficult because it marks the anniversary of Sara’s death. Oh, Sara! I miss her every single day, and I’ll never forget her.
July also brings Glioblastoma Awareness Day. It always falls on the third Wednesday of July, which this year will be July 16. I plan to mark that day as well, because I don’t want to forget GBM either. It’s now part of my life, no longer something I seek to avoid. I’ve written several posts for the GRO blog, and I hold my head high as part of the growing network of people committed to raising awareness of this disease.
If you’re reading this because GBM is part of your life, know that you’re not alone. And one more thing: we caretakers hold a unique power to tell the world about GBM. Every little bit of information we can share is helpful, because each piece is a stepping stone toward the one thing we all want—a cure.
Florence Wetzel is a writer and contributor to the GBMRO blog, where she explores the emotional and literary sides of GBM. She is the author of Sara My Sara, a memoir about friendship, illness, and grief. You can find more of her posts on the GBMRO blog.
