Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.
Fatigue is something that everyone has experience with, but the fatigue of cancer is something unique that only patients and survivors understand and try to cope with.
The dictionary definition of fatigue is: “a feeling of tiredness and exhaustion both physically and mentally caused by exertion.” So, every one of us has experienced this type of fatigue sometime in our lives — or maybe every day!
But this does not define fatigue from cancer correctly in my opinion.
Some of us have not exerted at all. We wake up in the morning feeling achy and tired, with what seems like every muscle aching in our body. We feel like a heavy weight is bearing down on us. For those of you have tried the therapeutic weighted blankets for sleeping — this is what waking up is like except without the blanket! The weighted blankets are supposed to apply deep pressure and help with relaxation, but us cancer survivors just wake up with the dreaded weight.
I prefer a term for fatigue and cancer given to me by another survivor — malaise.
While browsing through articles on cancer, I would venture to say fatigue is at the top of the list. When I whine to my oncologist (and occasionally I do) it is usually about fatigue. Fatigue is common with many chronic illnesses and people who have not experienced this try to understand, but rarely do. Remarks are made like “I am getting older so I tire more easily, I need more sleep now, and I am always tired too.” But they really do not get it when I need to go home and climb into bed immediately, or am unable to take one more step, or have to cancel an engagement. Before cancer, will power carried me through fatigue but no more. That weight all over my body frankly kicks my butt.
I have friends with other chronic diseases like MS and Fibromyalgia, that cause fatigue, and just the stress of getting dressed each morning is major. However, here I want to concentrate on malaise and cancer.
Why does this happen? The Mayo Clinic has an article titled “Cancer fatigue: Why it occurs and how to cope.” The article admits that the reasons are not always clear but have some ideas.
The cancer itself may cause tiredness by releasing proteins called cytokines, and research is being done on this factor. Organs being damaged, muscles being weakened, and hormones altered may be the culprit.
Treatments also can cause fatigue and it doesn’t matter which one- surgery/radiation/chemo/biological therapy all target cancer plus healthy cells and make it difficult.
Anemia from the cancer can contribute to fatigue, and this was how mine was diagnosed. Add to this the anxiety, insomnia, lack of exercise, improper nutrition and other problems we may experience as a result of this insidious disease, and the fatigue worsens.
We need to be honest (yes whine) to our doctors. Your PCP may also help and should join with your oncologist to help. My family doctor pointed out I had thyroid problems long before the cancer was diagnosed, and this could be causing some of the tiredness. He adjusted the dose of my thyroid medicine. You may also need medications to help with depression, insomnia and pain. These medications are there for a reason to be used when needed, and you and your doctor need to develop a plan, so you do not become addicted.
You can do some self-care such as light exercise, which is important. The Livestrong programs at the YMCA across the country can help with this. You need to listen to your body more than ever and taking it easy is imperative. I admit sheepishly when I was young and naïve I would make fun of “Old” people who could only do one event a day, and now I am one of them! I need to figure out what is most important for me and conserve my strength for that.
Unfortunately, there is no cure for fatigue. I personally feel this side effect was ignored because it was not fatal. However, this attitude has changed because of patients like us speaking up. We want quality of life and demand it more and more. I deliberately chose both a PCP and oncologist who listen to me, and know how important the quality of life is. Research is increasingly being done to figure out how to alleviate (not cure) this overwhelming tiredness. Be honest with your doctors, pick out your most important activities and go take a nap. You will feel better for it!