Might Validation Help the Exhausted?

Caring for every patient to the best of our abilities does not mean sweeping under the carpet the symptom listed most troublesome by the majority of cancer patients in this country.

There's something that over half of us say is worse than the pain of cancer and treatment and recovery.

And by that I mean that yes, most cancer patients rank fatigue as a symptom more bothersome than pain.

How stunning is that?

But do you ever hear about that? There's something to simply being heard; to not being discounted. In an online issue of a journal: the Oncologist devoted to cancer-related fatigue, dated 2003 (one article you can download below) you'll find articles that make a strong plea for acknowledgment that for cancer patients fatigue is real.

2003. That's Five years ago.

Oncologists knew - or should have known - that they should be telling us it was part of cancer to feel beyond tired, beyond fatigue, and that they don't really know all that much about why it happens or what to do about it.

It wasn't simply having someone acknowledge that fatigue is a part of the cancer experience that helped me accept that I wasn't nuts, but reading what Doctor Jane Poulson said of her own cancer exhaustion at least let me say "finally!"

And one writer in the journal article makes the case that It's worse if you feel isolated in fatigue:            

"What a comfort there would have been, however, in knowing that my exhaustion was being monitored, was being taken seriously....

"I was doing my utmost--a healthy diet, meditation, counseling, as much exercise as I could manage, and lots more besides--to cope with my fatigue. I needed to know that my exhaustion wasn’t the result of a want of imagination or some other lack in me or my attitude.....

"I didn't need to hear of 'sleep hygiene' with its pejorative implications. Nor did I need pills or potions to block out the experience. I knew I needed to feel it all fully, if I were to grow through it, to turn it to my advantage. I knew I had healing resources within myself if I could just push through the fatigue to access them. What I needed was to be held safely in that place." 

Maureen Gilbert. A Survivor's Journey: One Woman's Experience with Cancer-Related Fatigue The Oncologist, 2003

Unlike Maureen, I'm not fine with feeling it fully

I'm done with the "it's just something I'll have to go through" period of acceptance. Now I'm getting mad.  So to hell with feeling it fully. In fact I've had five months to feel it - and some years before that when we didn't know what the symptoms were from. I'm beyond ready to walk out the other side of exhaustion - or to be dragged there through some miracle of modern medicine.

Not only do I believe that it's necessary for this overwhelming symptom to be recognized and brought clearly into the light of day; it's just plain time to do something about it. Recognizing it and acknowledging it is certainly the first step.

If you're a patient:

Be assured that we understand you are beyond exhaustion, that it is real we encourage you to insist to your doctor that it's a serious part of your cancer experience. If the first one doesn't do something pro-active to try to help, see another doctor. No platitudes, no sympathy, and no telling you to tough it out is going to help you feel better.

If you're a friend or relative of someone with cancer 

Please know that their symptom is not something that a nap can simply take care of, whether their doctor gets that or not. Help them find a medical professional who is able to think outside the box. Let's face it; they are likely just too worn down to do this themselves.

In the end discounting cancer exhaustion makes it worse for the person experiencing it, for those around them who are baffled by it, and for the goal of reducing the impact of the disease in every way possible.

I'm not shutting up about until somebody hears these thousands of voices repeating the same words.

I just want to feel enough energy to get out of bed to make dinner without needing a nap after doing 5 minutes of it! I'm not demanding that I be able to walk from the car to the metro train to have drinks with friends. Or push my granddaughter on the swings. Or fly to a conference with my husband. I just want to get up and go to the grocery store for bread.

This lack of knowledge about cancer exhaustion is simply not acceptable in the United States in 2008.

Related reading:

• Download: Download cancerfatigue.pdf
• Doctor Poulson: We're Not Just Tired
• Cancer Fatigue: it Feels Like Death

 

Comments

[Kate]

Just wanted to thank you for the post. It is definitely an area that's not discussed enough and telling women to "rest" doesn't quite cut it. Keep up the good work.

[Wendy]

Have to agree exhaustion was one of major side effects. Even getting up to go the BR was exhausting.
After 12 years of being Breast Cancer Free I still find myself exchausted at times.

Also wonder if it had anything to with my Libido taking a extended leave of absence

[thaumata]

I would absolutely agree with this. I have yet to meet someone with cancer who doesn't mention this before anything else. Thank you for writing about it.

[debutaunt]

I haven't had chemo in over two years. I just got a clean checkup at 27 mos in remission post stem cell transplant and there are days that I will sleep all day and all night. There is almost no waking me.

I have never met a doctor (and I've seen tons) that really has any good advice for fighting fatigue. My only advice that seems to work for me is to listen to my body. If I'm tired, I sleep. I know it's not always feasible, as I have an 8 year old daughter, but I must do it. Otherwise I get too run down immune-wise.