A cancer survivor attempts to explain the extreme fatigue endured by the patient undergoing chemo.
Jane has earned three advanced degrees and had several fulfilling careers as a librarian, rehabilitation counselor and college teacher. Presently she does freelance writing. Her articles include the subjects of hearing loss and deafness, service dogs and struggling with cancer. She has been a cancer survivor since 2010.
She has myelodysplastic syndrome, which is rare, and would love to communicate with others who have MDS.
It is early afternoon, and I am enjoying lunch with my friends. We are laughing, talking and having a great time.
Without warning, their voices begin to fade and I can no longer concentrate. I excuse myself politely, pay my check and drive home. I immediately fall into bed and sleep for the next couple of hours. Frustrating as this is, I needed to do that before I could finish my chores for the rest of the day.
I slept in this morning and feel good. I take my service dog and do grocery shopping and run errands. When we return home, she is by the door ready for her daily walk. I collapse between the sheets to sleep before I have enough energy to take her.
I have paid a handsome price to see a real live theater play I love. I am relaxed and listening to the music. Suddenly my eyes close and I am struggling to stay awake.
Welcome to the world of real fatigue. The combination of cancer and chemo makes me chronically, unremittingly and forever tired. When I mention this as a side effect, only people with cancer and other chronic conditions can really “get it.”
I am on constant chemo and will be forever, but even people who have stopped chemo tell me they still are tired for years afterwards. This makes sense if you realize that chemo is pouring poison into your system to destroy the bad cells, but is also attacking the good ones. This makes the fatigue is unavoidable. I think most of us have figured out our chemo cycles so that we have an idea how long it will take to get at least some of our energy back before the next round.
In my experience, it does no good to try and explain the amount of fatigue cancer survivors go through. I put in all-nighters in college, many long days and nights working two jobs, stayed up countless nights writing a dissertation, and have been in the emergency room until the wee hours of the morning with relatives. The big difference was this – after a night’s sleep, I felt better. With chemo, fatigue is a tiredness that never goes away.
So how do I cope? If I mention to someone that I am tired from the chemo and they say, “Oh yes, I am getting older and I know what you mean,” I just smile and nod. I was working two part-time jobs when I started the chemo. Over the six years, I was on oral dosages I was forced to quit one job. When I switched to shots in the stomach and arms five days a month, I reluctantly quit the second one. I honestly feel guilty about the fatigue and that I have to take naps. That old voice instilled by my parents about “never being idle” still echoes in my head.
The only way I can handle this is self-talk. I need to remind myself that sleeping this much is not laziness, but part of the healing process. I can beat myself up, but then realize I am still alive! I am exhausted, but I do the best I can. If that means more naps, so be it.
I have been forced to realize that I can no longer work an eight-hour day and then come home and do a bunch of stuff around the house. I may putter around or go out and get groceries or be with friends. I may function for four hours or two hours or one hour or none. But I am enjoying another wonderful day.
Hey, I never said it was easy. I still feel guilty after seven years for “slacking off.” I also have learned a great deal.
It is fun to go out on my patio and have a cup of coffee whenever I feel like it. My dog loves her belly rubs. My cat enjoys my lap. There are lots of good books to read. If I want to spend lazy times on Facebook that is OK. Yes, I have seen that version of “Law and Order” before, but I like that show. And my friends enjoy my staying and talking over lunch or dinner, instead of hurrying home to grade papers like I did when I was teaching. The sunsets I get to watch are beautiful.
Yes, I am constantly tired. Yes, I want to do more. But there is much more to life than working all the time. Naps and laying around isn’t so bad either. I am happy to be here on earth for a little while longer.
Sorry – I am tired now and have to go take a nap!