Ask a Survivor
A neighbor recently asked me this; I’ve written about it before, but I felt there were new possibilities.
Are you tired, post-chemo?
Yes. Gods, yes. As I pointed out, I got my first tumor at age 17, so I’ve literally lived all of my adult life in the shadow of cancer. I really don’t have a good reference point for “healthy,” which is a problem when your entire frame of reference is, “Exhausted” or, “Slightly less exhausted.” That’s probably not a good baseline for life, in much the same way that being in more-or-less constant physical pain during chemo made me underestimate the severity of a minor sprain, and turn it into a severe, nasty sprain.
BUT, even with my grading system of, “Somewhat tired, more tired, really tired, exhausted, haven’t slept for 30 hours” (maybe working as an EMT wasn’t a great idea, in retrospect), chemo is grueling, and, even a year later, life is still exhausting. Like, minor family functions leave me impaired for days. My neighbor asked this in terms of how many hours of sleep I need, which is probably a more scientific, but inaccurate measurement. I say it’s inaccurate because, having insomnia and depression (you will, too, after your first neurosurgery), it’s a little hard for me to estimate. There are some days where I literally get 14 hours of sleep and wake up exhausted. There are some days where I get six hours of sleep, stay in bed for another hour and a half, and feel, if not refreshed, alert and somewhat productive.
I’m using an app for medical fatigue called “Untire” (shameless plug, that), which has a lot of useful ideas and features, but the most useful is the concept of mental energy as a dynamic, fluid state, instead of something that’s set in stone and slowly gets depleted and/or magically filled up by sleep and work. You roll into work at 9 am, you’re probably good to go. After a cup of coffee. Another cup of coffee. Since an average 8-hour workday only produces 3 hours of productivity, chances are, you’re tired by lunch, and, after that, you’re likely lying to your boss and doing busywork. By 6 pm, before Trivia Night, chances are, you’re fired up (and possibly have had several more cups of coffee).
I’ve written elsewhere, but medicine and cancer patients need to get better about understanding the difference between “tired” and “fatigued.” I doubt Miriam-Webster will make this distinction, and I know most physicians don’t when briefing patients on treatment options; but, to help survivors, we need to start recognizing the difference between exhaustion and fatigue. We’re sort of moving there with concepts like the spoon theory, but my own distinction between the two is this: exhaustion is when you’re tired. Caffeine and a nap will help. Fatigue is when it is painful to be awake. When I figure out how to deal with that, I’ll have a patent and an infomercial out for it. I do know you can sort-of work through fatigue — or at least, give other people the impression you’re awake and alert, even if you’re just sleep-walking.
The two concepts are critical for survivors because the coping techniques are different, and you’ll experience them at different times (sometimes simultaneously). I’d say that I am fatigued after a year of chemo (and I’d argue that “chemo brain” is just what happens after a month or two of fatigue).
Medline recommends treating fatigue with, multivitamins, sleep, and exercise. Part of the horror of cancer survival is learning the deep disconnect between the medical establishment and patients that could be solved with some very basic journalism skills and education on part of doctor and patient. In this particular case, the simple skill of “active listening” would probably clear things up, because, if fatigue could be solved that simply and easily, it would not be a problem.
So, yeah, still somewhat fatigued, it shows up more on some days than others. Still extremely tired, so, if you need me, I’ll be taking a nap.
