by Cheryl Broyles, 12+ year GBM survivor
Over the last 12 years of battling glioblastoma multiforme, I realized that it is not just "physical" fatigue that hits us patients. Yes, the chemo makes us weak and tired, but it is more than that. I've been off all treatment for 3 years now (my last brain surgery and Temodar was back in 2009). So I have been chemo free for over 3 years now. And I still get VERY fatigued.
I used to think of it mostly as "physical" fatigue. Because I would feel so worn out, I would need to take a nap in the afternoon before my two boys got home from school. Some days I felt great and perky, with my brain working clear. Then another day I would feel fatigued and like a vegetable and would just curl up on the couch, not having energy to do anything. I was SO frustrated thinking "why do I have good days and bad days?"
Then I started seeing a speech therapist (because I was having a harder time understanding what people were saying, because of background sounds distracting me). She gave me info that opened my eyes!
The fatigue I was getting was not "physical" fatigue, but "brain" fatigue! My neuro-oncologist told me years ago that my brain (after treatment damage) is like an 80+ year old lady (I'm only 45). I remember wondering years ago why my grandma was always in her PJs by 4pm in the afternoon, and she was too warn out to do much. Now I know why!
Our brains get tired! For those of us with brain tumors, and the damage from the tumor and the treatment, it makes it VERY difficult to do the normal "thinking". "Normal" people THINK about things easily. For us brain tumor patients, it is like a mental marathon just thinking about what to buy at the grocery store! So it is our brain getting overstimulated that causes us to break down and be fatigued. Our brains just shut down!
After keeping a journal of my good and bad days, I realized that my bad days, where I feel like a veggie, are the days after I have a busy and noisy day. My brain needs to recover, the way a person needs to take a break to recover their muscles after running a marathon race. We brain tumor fighters need to recover from over working our brains! We will lie on the couch like we are worn out, because our brains have shut down.
So don't be surprised if your loved one is still fatigued and tired, even though the radiation and chemo is over. They will be that way the rest of their life. It is "brain fatigue", not physical fatigue from chemo. The key is to learn how to work around it.
I have realized I have about four hours a day of sharp brain function, then it goes downhill fast. So if I want to be perky and thinking straight for a dinner event some evening, I need to make sure I have a VERY quiet relaxed day before that evening, so I can have the perky energy and brain function to talk and be part of the event. If I go grocery shopping (which takes a lot of thinking and involves a lot background noise), then I would be a veggie that night at the event.
My hardest days are the weekends, when my two boys and husband are at home with me all day on Saturday and Sunday. I love being with them and having fun, but the busy sounds of talking, doing, interacting, thinking, noises from my boys, etc. wear my brain down. Monday is recovery day for me! I NEED hours of complete silence each day. So please, you caregivers, understand that your loved one needs some quiet time each day to give their brains rest. We are not "normal" anymore. We will not get back to "normal".
Sometimes I need to "do" something in the morning, like go to a kids’ event at school. If I do, I need to come home after the event, and have COMPLETE SILENCE for a few hours to recover from the overstimulation in my brain, so that later that day when my husband gets home from work and boys from school, I can be functioning again that evening. Like I said, I think many patients (or caregivers) don't realize that our brains are fragile. Treat them gently! We can only handle so much "thinking" in a day. ANY background sounds, over stimulation, big groups of people talking, etc. is way hard on us.
In the past I often reacted to my "overstimulation" by depression, wanting to be alone, not wanting to interact with other people. But now I realize that I fell into the fatigue and feeling bad, because I was "allowing" myself to be overstimulated. Now I have learned to work with what I've got--my old worn-down brain. So by giving me my quiet time needed, my brain and body can work MUCH more perky and clear, the hours I really need it.
OK, sorry for going on and on. I just wish I had known this years ago! This June will be 12 years for me since my first GBM brain surgery. I wish I knew years ago that I "have limits" on what my brain can accomplish in a day. It does not have to be bad every day. My brain can work VERY well, if I make sure I get the quiet time I need to let my brain recover from overstimulation.
I just wanted people to know, often what we brain tumor people have is not physical fatigue, but brain fatigue, and you can make it better by understanding your limits and working around them. If the patient has young children at home making lots of noise running around, PLEASE give the patient some quiet time with no T.V. noises, etc.
We’d like to thank Cheryl for this article. Cheryl Broyles maintains an active web presence, corresponding with other victims of GBM to share advice and hope. She has written a book about her experiences, which you can purchase at her website, here.