Living with lung cancer: Respect the fatigue

A friend who’d been through cancer and chemotherapy brought us gifts: a soft, fleecy blanket and a pillow for each of us. “Whenever you need a nap, take one,” she said. “These are to remind you.”

Ironically, we’d visited this same friend during her treatment and been surprised at how unavailable she was. She seemed to sleep half the day. Now, though, we understood. (We also felt terrible, in retrospect, for having shown up as a family of three house guests during that period — she reassured us that it had been nice to see us, but I would never do that to a person being treated for cancer again. I would stay in a hotel.)

Cancer saps your energy all by itself. There’s no way around it. I may have been dealing with cancer fatigue for months before I was diagnosed; I say “may” because I’d had a concussion the year before, so anytime I felt tired or needed extra sleep I just attributed it to lingering post-concussion syndrome.

Cancer treatment exacerbates cancer fatigue in what can feel like a thousand different ways. For me, it started with my hospitalization in December 2012. You don’t get much sleep in the hospital, and I was in for ten days. By the time I was released, I’d spent so much time in bed that just walking around exhausted me, and yet I was so adjusted to the hospital schedule of having my vitals checked at every shift change that I couldn’t sleep through the night at home.

During the weeks between diagnosis and treatment, my doctors had me take steroids as a stopgap measure. Falling asleep on steroids was next to impossible. Sometimes I just got up and read a book, or baked cookies, or did something else until 3 or 4 a.m.

Chemotherapy made it worse. I had hot flashes, especially at night; I’d feel hot all over and throw off all the blankets, and then, a few minutes later, I’d feel cold again. I was also scared. It’s hard to sleep when you’re scared. In addition, I took steroids for a few days before every chemo infusion. Sometimes I lay awake for hours and hours, only drifting off a little before dawn. So I was always tired all day.

For a while, even when my other symptoms improved and I was able to handle a certain amount of activity, I could not schedule anything before noon or 1 pm because of the strong possibility that I wouldn’t fall asleep before 5 am, and then wouldn’t be able to get up. My partner got our daughter dressed every day, packed her snack, and helped her get out the door to school.

I did manage to teach that semester, but this is how I did it: on teaching days, I stayed in bed all day, only getting up in the late afternoon. My colleagues picked me up and drove me to my evening class, and then drove me home. I didn’t try to do anything else on teaching days, and I pretty much rested all day the following day. (My doctors were great about helping me schedule infusions and tests to accommodate my teaching schedule.)

When I finally was able to get a decent night’s sleep again, at least most of the time (long after stopping chemotherapy, through a combination of medication, therapy, acupuncture, exercise, and time), I slept and slept. You can’t really “catch up” on lost sleep, or so I hear, but I did my best!

Even the healthiest, strongest lung cancer survivors I know, long-term survivors of Stage IV lung cancer who have been at this much longer than I have, experience disrupted sleep and fatigue. In all the lung cancer education and activism they do, they make sure to say not to call before a certain hour. If they’re thinking about attending a medical conference, they make sure they’ll be able to take rest breaks. You have to respect the fatigue.

Note: In keeping with the theme of respecting the fatigue, I’m cutting back my blogging from seven days a week to five. I’ll be posting new entries Monday through Friday, but not on the weekends.

About Irene Elizabeth (Beth!) Stroud

Queer suburban mom, graduate student, lung cancer survivor, card-carrying United Methodist.
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2 Responses to Living with lung cancer: Respect the fatigue

  1. Ah, yes, the fatigue. I was warned about that when I started chemo. I don’t think anyone can truly understand that bone-deep fatigue unless they’ve been through it.

  2. I remember feeling so bad when I went to visit my mom and shed sleep through the whole visit. I almost moved home just so that I’d be around during her peak hours.

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