One day, after seeing all my patients at the hospital, I stopped by the room of a woman who had been in the hospital for over a week. Earlier in the day, she had told me her nails were too long, and she didn’t have the strength to cut them. She was used to being well-groomed, and those long nails made her feel like she was no longer herself. I knew that she was mainly tired of being in the hospital, of feeling like she had no control, of watching her disease take over her life and her identity. I let her nurse know about her request, but was surprised to learn that hospital policy did not allow nurses to cut nails.
So, I walked into the patient’s room with some nail clippers, sat down, held her hand, and trimmed her nails while chatting with her about her day. The whole visit took about 5 minutes. Nearly twenty years later, I still remember her beaming face when I finished. I could tell that she felt like a person again.
When faced with a life challenge as difficult as a glioblastoma diagnosis, it can feel like your life has stopped – like you have ceased to be the person you were. It is easy to feel lost amid a whirlwind of survival - doctor’s appointments, tests and treatments, major life adjustments in work and day to day activities. It can feel like you have to put everything aside to fight fight fight and leave the business of living to the uncertain future.
The thing is, you are still you. You are still alive. But how do you keep living your life even when you have glioblastoma? Others with glioblastoma, their family caregivers, and their health care teams have shared some hard-won wisdom on this front.
First, special memories can be made even from simple moments. Ryan Ann Guglielmotti, a former care partner, shares one such moment with her husband. At the time, his disease was quite advanced. This formerly independent and proud man was now in a wheelchair and couldn’t talk much. He had been sticking to a strict cancer-fighting diet since diagnosis. That day, he decided he wanted Popeye’s.So, she bundled him up in his winter coat, got his wheelchair into their rented wheelchair accessible van, and finally made it to the drive-through. She shares the look of triumph on his face in the backseat when he got his meal. When they made it home, she pulled out a table onto the driveway, wheeled him over, put on some music on her phone, and the two of them had a lunch date. It’s a memory that brings a smile to Ryan’s face as she tells it.
Second, choosing to keep living is an active decision. Justin Tarquino really tried to treat his husband like he was his normal self – and took his husband’s lead on when he wanted to talk about the diagnosis. They continued to do some activities that they’d once enjoyed - date nights and watching their favorite shows, which made life feel normal. Robert Marx looked for humor and fun wherever he could, even when joy was scarce. When his wife was in hospice in her final days – and it took the two of them plus a caregiver to get her to the bathroom – he remarked that they were in a tango for three, and all three of them had a hearty laugh over it. He also shared that even when his wife was paralyzed on one side and couldn’t speak, he still made sure she was part of the conversation. He never wanted anyone to be talking about her instead of to her when she was in the room.
Third, there are some life hacks to try. Social worker Alexandra Finkle suggests gathering the family to brainstorm things that bring a smile to your face: going for a walk, watching the sunset, playing a board game, having a family movie night. Write each of them down on a piece of paper and put them into a jar. Every week, pick out one thing to do. Dr. Courtney Burnett acknowledges that days before her next brain scan she starts getting what’s known as scanxiety - wondering what the scan will show and worrying that it might be bad news. In those days, she tries to fully book her days up with seeing friends, family, getting a massage, going to the movies – making herself too busy to think about the scan. The day of the scan, she schedules something to celebrate at the end of the day no matter what the results are.
On the other hand, when physical limitations limit your options, families have figured out how to maximize what they do have. When Amber Jackson’s husband could only make it to the couch, the whole family gathered around him there reading and spending time together. Each week when it was Paolo Presta’s turn to spend the day with his mom, he called all her siblings in Italy via video chat so she could see their faces. He remembers those times of laughing, singing, living “as if she didn’t even have glioblastoma.”
As social worker Jennifer St. Clair reminds us, it’s important to have grace for yourself: “Don’t give up all the things you love because that’s what we’re fighting for. That’s why we’re trying to beat this disease, so that you can continue living your life.”
