Keep an Eye Out for the Gifts by Florence Wetzel
Photo Courtesy of the Bastos Family
Please share your connection to glioblastoma caregiving and more details about your friend Sara's battle with this type of brain cancer.
I met Sara in 2013 when she started working as a housekeeper for my mother. Sara was a warm person with a great sense of humor, and she became like a daughter to my mother and also like a sister to me. She helped me care for my mother until my mother passed away in 2017, and our friendship continued afterward. Sara and I formed a deep bond; she was one of the most important people in my life.
In December 2018, Sara had several seizures, which led to an MRI that detected brain tumors. After surgery in January 2019, doctors told her that she had glioblastoma. Sara started treatment immediately, and she lived for seventeen months after her diagnosis. She died in July 2020 at the age of 57.
I was often overseas in Europe during the course of Sara’s illness. While I was abroad, we spoke daily by phone, and when I was in New Jersey, we saw each other about three times a week. In the summer of 2019, Sara was still mobile and able to go out, and we had a wonderful three months together. That was a time I will always cherish.
During subsequent visits, Sara’s condition gradually worsened, so we always saw each other at her home. I spent Sara’s last months in New Jersey, and despite the pain of that time, I felt incredibly fortunate to be with her until the end.
Could you describe how creative writing supported you during that time?
I had been writing almost daily since my early twenties. During the seventeen months of Sara’s illness, I was working on a book of horror short stories. Immersing myself daily in those imaginary worlds was a wholesome escape that gave my mind and soul a respite from sorrow and anticipatory grief.
I think this is relevant for all caregivers with a hobby or beloved occupation. As much as you can, try to keep doing the things you love. Those activities will nurture you, giving you strength to nurture the GBM patient in your life.
You mentioned journaling as a tool for coping with Sara’s illness. How did journaling help you, and what advice would you give to others facing similar challenges
I wrote a little bit each morning in the spirit of what Julia Cameron calls “morning pages” in her classic book The Artist’s Way. She suggests writing three pages, but I usually did just one or two. Writing whatever came to mind was a great way to release emotion and organize my often-jumbled thoughts. Journaling was like a friend I could tell anything, one who accepted me no matter what came out of my pen.
If you’d like to try journaling, just start! There’s no right or wrong way to do it. Some people have a special notebook and pen, sit in a particular place, or write at a specific time of day. Journaling can be a daily routine, or something you do when the spirit moves you. It’s incredibly flexible and always available when you need it.
In my case, I would write in a spiral notebook, then tear out the pages and throw them away. That was just part of my process, which may not work for everyone. Looking back, I think the act of ripping out the pages and throwing them away was a kind of release, a way to cast out feelings and give myself a fresh start.
I also encourage people not to worry about grammar, spelling, or other technicalities. You don't have to stick to traditional prose; you can write poetry or small snippets and add drawings if you like. Journaling is a personal practice just for you, so it’s not about producing a perfectly polished text. You can, of course, show your writing to others or rework it into something publishable. But no matter what you do with your pages, the act of journaling is freeing, and it can be a powerful tool for people caregiving for someone with GBM.
How did the act of writing horror stories continue to be a safe space for you after Sara passed away? What role did writing play in navigating through your grief?
In the two years following Sara’s death, I continued to write my horror stories. They gave me a reason to get up in the morning, and they were an alternative reality where I could escape from overwhelming emotions.
Eventually, I decided to write a horror story specifically about brain cancer called “Anything at All.” It’s about how far a person will go to cure a loved one with GBM. I felt incredibly helpless during Sara’s illness. Still, even though I couldn’t control what was happening to her, I could at least control the words on the page. Writing that story was a kind of magical alchemy that made my grief bearable.
So that’s perhaps another tip, to create art about GBM as a way to understand and process your experience. It could be a short story, a painting, a song, a dance. And remember, your creations are solely for your own healing process. Sharing them with others is optional.
Transitioning from writing short stories to a memoir must have been a significant shift. What prompted you to start writing your memoir two years after Sara's passing, and how did this new form of writing contribute to your healing process?
After Sara died, I often considered writing about our friendship and Sara’s tremendous courage throughout her illness. I was still working on my horror stories, and only after finishing them did I decide to try writing about Sara. Two years had passed since her death, and I was still extremely unsettled by the loss. I hoped I would find some peace by writing about our time together.
I started writing the book in June 2022, when I was spending the summer in Dublin. I wrote very slowly, just two or three pages a day. Writing the book brought up strong emotions; I could only handle a little at a time. I cried a lot as I wrote, and I often felt sad and numb the rest of the day.
But as the book took shape, I felt my grief settle into something different. Suddenly it had a form on the page, and I found that healing. I also suffered from terrible hypochondria after Sara’s death, and that disappeared as I wrote the book.
Writing a memoir felt odd because I don’t write directly about myself in my fiction. I’d even say I hide within my characters. But in this memoir, I am one of the characters! That felt frightening, but I really needed to tell this story, so I pushed through my fears and wrote it anyway.
It still feels scary to expose myself and my feelings so publicly, but my hope is that my honesty will help others who are on the same journey—a journey that none of us have chosen but one that we nonetheless need to live through.
Photo Courtesy of the Bastos Family
You touched on the role of friends in the context of glioblastoma caregiving. From your perspective, what unique support can friends provide that might differ from what family members or partners offer during such a challenging time?
As one of Sara’s many friends, I wasn’t the primary caretaker. It reminds me a little of being an aunt and a stepmother: you’re not the main person, but you still have an important role to play.
As a friend, there’s lots of opportunities to offer support, even in small ways. Among other things, I picked up organic produce for Sara because I lived next door to Trader Joe’s, and I also brought her dog Lucky (who used to be my mother’s dog) to the vet several times. Your friends and family have a lot on their plate, and having someone step in and take care of the little things is helpful.
Another form of support is that your friend might be comfortable telling you certain things they wouldn’t necessarily tell their family. For instance, I accompanied Sara when she had an appointment to prearrange her funeral. She specifically asked me not to mention it to her family as she didn’t want to cause them additional distress. I kept my promise, and when the time was right, Sara told them herself.
As a caregiver and an author sharing your journey, how important is it for you to connect with others who have experienced similar challenges? What do you hope readers take away from your story?
My experience with Sara has instilled in me an instant empathy with anyone who has a loved one with a life-threatening diagnosis. I know in my bones what it’s like to live through a beloved person’s illness, and I’m willing to talk about it. I hope that can help others feel less alone.
There are several things I’d like readers to take away from my book. One is giving them the opportunity to meet Sara and witness her joyful approach to life, as well as her courage during her struggle with GBM.
In terms of caregiving and loving someone who has GBM, I hope readers can see that it’s possible to bear the unbearable. I also want to share that grief is unpredictable, and it can make us act in ways we’re not proud of. All we can do is learn from our mistakes and try to do better next time.
Ultimately, I want to convey that there is great comfort in loving the person you lost, even after they are gone. For me, this book is a way to tell Sara I love her and bring her to life in an invisible way.
Is there anything else you'd like to share about your experiences as a caregiver, author, or advocate that we still need to discuss?
Just before returning to NJ to see Sara for the first time after her diagnosis, I had lunch with my friend Alise. I told Alise about Sara, and I said I was scared to go back and be with Sara as she battled GBM.
Alise shared her experience of supporting two friends through breast cancer, both of whom ultimately passed away. She told me that being with Sara would sometimes be hard, but then she said, “Keep an eye out for the gifts. Because there will be gifts.”
Her words shocked me, but I never forgot them. And sure enough, there were gifts. Maybe it was a day when Sara was well enough to have a conversation, or finding someone to drive me to her house at the height of the pandemic. The more I looked for gifts, the more I found them, and I did my best to feel grateful.
So that’s what I’d like to emphasize most of all: amid the pain and grief, keep an eye out for the gifts. Because there will be gifts.
For more information on morning pages, please see Morning Pages | Julia Cameron Live
Photo by Fanny Beckman
Florence Wetzel has written books in many genres, including thrillers, biographies, and poetry. Her most recent book is Annika's Storage Space: Thirteen Sinister Stories, and her new memoir Sara My Sara: A Memoir of Friendship and Loss was just published and is now available. Connect with Florence on Facebook, search Florence Wetzel, and on Instagram at @florencewetzel108.
