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.
How do we describe the type of fatigue cancer survivors feel? Here is one explanation.
I have been battling a rare blood cancer for almost ten years now. Since it is incurable, I have also been battling fatigue for the same amount of time. Presently, I am on weekly shots just to keep my red and white blood cell counts up enough to avoid the risk of constant infections and to keep me going and writing!
When I was on chemo for 8 years, I was even more exhausted with what doctors would term malaise. This was both from a toxic foreign substance being put into my body, and the nasty side effects like diarrhea that depleted me of energy.
Right now I am in sort of a remission, but still chronically tired. People do not realize how bad the fatigue is, but when I push too hard, I may end up in bed for a couple of days. My friends know me and have mentioned this, but they also realize this is part of my personality. I do not want to miss important events, so I go along and pay the price later.
A dear friend who has survived breast cancer asked me recently what “my” kind of fatigue is like. I looked at her initially in astonishment. She had breast cancer! Then it slowly dawned on me what she really was asking: she is recovered after several years, and feeling as close to “normal” as anyone after surviving cancer can feel. She was asking what it was like to be me.
“I feel like a blanket is covering me, a very heavy one and I have to push myself up to get out of bed in the morning,” I said.
She nodded — that was enough of an explanation for her.
Yes — this type of fatigue is different. No matter how much sleep we get, it takes an effort to move every single limb. We may be out with friends or family and suddenly need to crash. We sit down to watch television and end up falling asleep — though I did that before cancer! We never truly feel energized like the little bunny that sells batteries on TV.
Of course, there are things we can do to combat fatigue. Proper nutrition, regular exercise, keeping as active as possible given our situation, and trying to stay positive because negative thoughts drain us of any remaining energy.
To complicate my fatigue, I am prone to some depression. Recently I went out for coffee with a wonderful friend. Tearfully, I told her my blood work was low as always, but remained constant so I must be depressed. I explained a number of things going on in my life that were bothering me. And then BAM — a few days later I visited my doctor, and sure enough the red blood cells had decreased. She increased my Procrit shots to weekly instead of every other week. Later, my friend told me she thought all along it was physical, not mental. Honestly the physical and mental feed into each other, so should it make any difference? We are still tired…
It all feels like being covered by a heavy blanket. But we survivors have learned somehow to pick up the blanket, lay it aside and get up. Because, after all, to give in would be much worse!