Most people don't know this but most days I live in one room. And it's not because I want to. Truthfully, I'm so exhausted that going downstairs three times a week is a treat. And an exhausting and humbling experience.
I'm not entirely alone but there's not a whole lot known about general cancer fatigue. WhyMommy talks about radiation fatigue. But I'm not undergoing radiation. Derek Miller talks about chemotherapy fatigue. At this point I'm not even healthy enough for mid level chemo, so that's not my issue.
But before long, good scientist that she is, WhyMommy was sure to get to the bottom of it and twitter-linked to this cancer patient and doctor last night. Finally someone else who recognizes that overwhelming wall of fatigue we're dealing with.
Martha Jane Poulson MD writes
"In an effort to be encouraging, many colleagues reassured me that many women with breast cancer continue with all their family responsibilities as well as work full time.
"Rather than helping me, this made me feel somewhat inadequate or lazy because I was so tired. It also led me to fear that my fatigue was all in my head and that if I could only get a grip on my emotion I would be more productive."
In a review or studies on cancer fatigue Dr. Oliver Minton, a clinical researcher at St. George’s University of London was quoted as saying:
“Fatigue is difficult to treat as it usually has a number of contributory causes — many of which are not fully understood. Patients and professionals alike may consider tiredness as an unavoidable part of cancer treatment, rather than a problem to recognize and address."
Platitudes and Attitudes
Among other therapy, drugs can improve some symptoms of fatigue in patients, but apparently in most, doctors think fatigue is to be expected, thus do nothing to treat it aside from provide platitudes.
Before her death in 2001 Dr Poulson wrote in depth about the debilitating effects both fatigue and the attitude of her colleagues and care providers had on her system and her life
"While exercising or a nap may be helpful suggestions to normally fatigued persons, these may not be the solutions for cancer fatigue."
Any Time at All
I was not prepared for this kind of crushing exhaustion three months after surgery but now discover that it is not only not unusual during treatment or but can occur at any time in patients with more advanced disease. That it could hit increasingly as it seems to, is a shock.
As Doctor Minton points out after having analyzed 27 studies of 6,746 participants that examined the effectiveness of certain drugs for relieving symptoms of cancer-related fatigue:
"It can hit at any time - even when they are free of cancer. There may be options for treating it at all of these stages,”
Read more about Jane Poulson in her autobiography, finished shortly before she died.
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Reference: Center For The Advancement Of Health. "Anemia Drugs And Stimulants Ease Exhaustion In Some Cancer Patients." ScienceDaily 28 January 2008. 31 March 2008 http://www.sciencedaily.com/releases/2008/01/080124203258.htm
Wow, I'm sorry to hear you're dealing with this. No idea if there's anything constructive I can say. I've had major surgery (not for cancer) and I know that general post-op fatigue can be total, yet mysteriously intermittent. Still, I can only imagine what you're going through.
I guess my best stab at something helpful is this: Hang in there. You've got LOTS of folks rooting for you. And don't feel guilty for one second about what you can or can't do on a given day. You give so much: feel free to take the rest you need as you go along.
Posted by: Tim (@Twalk) Walker | Mar 31, 2008 at 09:31 PM
I'll be tired for you...if I could.
Cancer sucks...it really does...today more than most.
Posted by: Bob Carney | Mar 31, 2008 at 09:32 PM
Hon, I would think you'd be doubly prone to it... with the Fibro and all.
For me, even the "mild case" of Fibro I've been diagnosed with is often accompanied with bouts of such severe fatigue that I wonder how I ever used to do anything as simple as going for a walk... and I don't have cancer at present.
Hang in there - and do what you CAN do, not what you feel you should do. Let other people lighten the load as much as they can. Save yourself for the things you need to do.
Oh, and I have NO idea why we haven't talked about this before, but are you aware of the Spoon Analogy?
It will help you to explain things to people who don't get it.
http://www.butyoudontlooksick.com/the_spoon_theory/
Posted by: GeekMommy | Mar 31, 2008 at 09:42 PM
You are amazing! I have a hard enough time being productive myself, and I don't have cancer or any other similarly diagnosed disease... I know that others in your situation are gaining insight and inspiration from you.
Posted by: Laura C. | Apr 01, 2008 at 11:25 AM
Yeah. Just. Yeah. I remember days during chemo when I couldn't lift my body to sit up in bed. (One of those days, I discovered Second Life, and I suddenly felt so freeeeeeeeeeee....) It was absolutely unbelievable. Even before chemo started, I was exhausted. The body works hard fighting cancer, at all stages, and it is exhausting.
I'm so glad we've met and can chat about this....
Posted by: WhyMommy | Apr 02, 2008 at 06:06 PM