Making the decision to try OptuneBefore starting Optune, I had concerns and fears.
For starters, I didn’t want to shave my head!
But when I researched Optune, I talked to my doctors, friends, and family about the pros and cons of this treatment, and I understood the prognosis of glioblastoma with and without Optune. In the end, I decided that Optune was more important than my hair.
As a single mom, I am the only adult living in my house—and also my own caregiver! I do everything involving Optune by myself.
So far, it hasn’t been too hard on me. I’ve learned a few tips and tricks, like making sure to pay attention when my supplies of arrays are down, or how to troubleshoot when I hear a strange beep.
But when it comes to the problems I cannot solve myself, such as irritated skin or insurance, I communicate with my doctor or the nCompass® team. The nCompass team answers all of my calls and is very helpful 365 days a year, 24/7. I know they’re available at any hour because I have called them in the middle of the night when I couldn’t figure out why my Optune was beeping. They knew, helped me fix it, and I went back to sleep peacefully.
Changing arrays—by myself!I invited my mother over for the initial training with an nCompass Device Support Specialist (DSS). At first, I planned my array changes so that my mom could help, but I later taught my 12-year-old daughter to help as well. When it became more difficult to plan my array changes around an available helper’s schedule, I decided to teach myself how to change them. With a secondary mirror and practice, I now regularly change my own arrays!
Staying connectedI spend a lot of my time at home due to GBM, so making time for socializing with friends and family is critical for my mental health. I have been as creative as possible this past year and even planned my own birthday party via Zoom. I got to virtually chat with a good group of my friends, and we played a rousing game of charades, too!
My personal backup planSome days I feel great, but, of course, there are the bad days. Because of these, I always create a backup plan for myself. When I can’t do it alone, I check in with friends and family who might be available to help. I ask, “Who can drive me to my appointment?” Or, “Who can help me with my array changes?” There is a sense of
comfort in having a backup plan and it gives me peace of mind.
Accepting help, asking for helpIt takes a lot of energy to care for yourself as a GBM patient with Optune, chemotherapy, fatigue, and so much more. I learned that it is okay to accept help if someone offers it, and when I need help, I know it’s okay to ask for it.
There is no weakness in asking for and accepting help. I have found solace in accepting help because it strengthens my relationships and makes me feel loved!