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The F word
Fatigue is the most common challenge of cancer -- pervasive, life-changing, and not responsive to rest. But there is an answer
By Julie Mason, The Ottawa CitizenJune 28, 2009
It was laundry day in our three-storey townhouse, and I'd already made two trips between bedrooms and basement.
I looked fine and, if you had asked me how I felt that day, I'd probably have answered "fine." But when the Man of the House found me snivelling at the bottom of the staircase, I was forced to admit I'd succumbed to one of cancer's unfortunate side-effects -- fatigue.
Fatigue is cancer's F word, the most common challenge of the disease. It affects as many as 90 per cent of people living with cancer -- before, during and even long after treatment.
My healthy grandma sometimes said she was "bone weary," and that's a good description of the fatigue from cancer and other chronic diseases. It's not like normal fatigue. It's a pervasive, life-changing exhaustion that doesn't respond to rest.
Walking the puppies around the block feels like a triathlon; grocery shopping is an endurance contest; making a meal requires several rest breaks; even simple things like reading a book or talking on the phone are tiring.
Other symptoms include weakness, overall lack of energy, leg pain, shortness of breath, as well as irritability, and trouble thinking, concentrating and making decisions.
One of the most difficult aspects of fatigue is its invisibility.
After recovering from the obvious effects of surgery and chemotherapy, I looked reasonably healthy, even though I felt as if I was walking through quicksand.
Everyone, including me, thought that I'd soon start doing what I'd always done.
So the Man of the House was surprised to come home and find me snoozing face-down on my desk every afternoon.
Even the most sympathetic friends found it hard to understand why I constantly said, "I'm too tired." I kept wondering where my get-up-and-go had got up and gone.
Friends and family aren't the only ones who don't recognize fatigue. It's so subjective and difficult to measure that doctors and other health-care providers tend to ignore it.
Too many physicians trivialize the problem and its impact on everyday life.
On a visit to one oncologist, I asked what I could do to help deal with the paralyzing exhaustion. She shrugged and told me fatigue is just part of having cancer.
Looking over her shoulder, I could see a poster on the bulletin board behind her for "Energize!" a seminar run in her own cancer centre and designed to help people just like me.
Happily, more physicians and cancer centres are beginning to understand that fatigue can destroy health and quality of life.
The world-class M. D. Anderson Cancer Center in Texas offers patients a unique multi-disciplinary fatigue clinic.
All patients start with a complete assessment of their physical and mental health.
Cancer-related fatigue is still a bit of a mystery, but some of the contributing causes are anemia, radiation, chemotherapy, medication, poor nutrition due to nausea or lack of appetite, pain, depression, anxiety, insomnia and stress.
At M.D. Anderson, the initial assessment is supported by a comprehensive treatment plan and a team of people to help implement it. A core recommendation is almost always exercise.
It sounds odd to consider physical activity when you're too pooped to participate, but one of the most important ways to treat fatigue is with planned exercise.
That annoying slow-walker you passed in the park was probably me.
After a day or two of dragging myself around the block, I started to feel better -- and walk faster.
Most of us never think about conserving energy, but when you don't have a lot, you learn to put important activities at the time of day when you have most energy, and plan for rest.
That's why I walk in the morning and curl up in front of The Young and the Restless in late afternoon.
Ordinary things like bending over, reaching, or standing to prepare food or wash dishes can be tiring, so it helps to arrange a kitchen or office to put everything, including a chair, close at hand.
Many people with cancer continue to work, but they often need rest during the day. Workplaces that provide a quiet room for a nap allow an employee to continue to be productive.
The fatigue from cancer or other chronic illness brings loss and grief.
It's hard to have to give up things we love -- like bike riding on Sunday mornings or bending over to plant veggies. As a stubbornly independent person, I found it difficult to accept help.
When dear friends offered homemade meals for my freezer, I resisted. I didn't want to admit I needed their help. But their generous gift of yummies let me avoid the exhaustion of preparing a meal, and I'm deeply grateful they ignored me.
These days I'm cooking again. The puppies are getting lots more walks, and I've optimistically taken my bike in for a tune-up.
Best of all, when someone asks how I feel, I can honestly answer "much better." Still, with all the emphasis on survivorship, it's easy to forget that invisible and long-term fatigue is the price many of us pay for living with cancer. Remember that the next time you pass a slow-walker in the park.
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