Ask a Survivor
Far and away, the most common question I see on various corners of the Internet pertaining to brain cancer patients is, “Is it common for survivors to be this sleepy/lethargic/tired/whatever? Should I be worried?”
In answer to the question, “Should I be worried?”
Fuck yes. This person has brain cancer. When you are diagnosed with a chronic, incurable disease that’s usually fatal, that is the time to worry. That’s an asinine question. If you get tuberculosis, you should worry, and that’s curable (mostly; multi-drug resistant tuberculosis might not be). You can’t panic — ever again, your life depends on you remaining calm and focused (it’s a cruel irony that surviving an organic brain disease requires you to be at peak cognitive functioning at all times, but c’est la vie).
In answer to the other one, is it common for survivors to be tired?
Also, fuck yes. If someone sustained a hard-core heroin addiction for a year, they’d need a nap. The treatments that you undergo to survive cancer are much, much more dangerous and damaging than some pesky opiate overdoses. There were points after my first and second neurosurgeries where I was literally sleeping 14–16 hours a day. That’s not, “I was in bed 14–16 hours,” that’s, “I was asleep for over half the day.”
Healthy people don’t realize this, but healing is exhausting. Both of my parents recently suffered major injuries, and have privately expressed that they have a new appreciation of how exhausted I must’ve felt… well, my entire life, really. My leukemia friends say that they’re still experiencing fatigue issues years after treatment. If you’re ever really worried that the disease is progressing, yeah, call your oncologist. But it is insanely exhausting just recovering from neurosurgery, chemo, or radiation — brain cancer survivors get all of that. I honestly have no idea how long it takes to fully recover, because, traditionally, most brain cancer patients die long before that can even start. One of my breast cancer survivor friends said it’d take about a year just to heal from chemo; I’m only ten months out from chemo.
So, if someone is tired and sleepy and irritable a lot, yeah, it could be disease progression — it could also be just recovering from one of the most dangerous and harmful treatment regimens on the planet (heaped upon layers of emotional stress). And then there’s “the new normal.” This is a phrase survivors toss around at each other a lot, and it’s one of those minority in-jokes that healthy people only seem to tangentially grasp, but, to try and explain it; stuff that you used to be able to do without a second thought is suddenly, physically beyond you. And other stuff that you can still do, is exhausting.
Take my shortened, at-home physical therapy routine. It’s pretty simple. I just stand with one foot in front of another (if I can — balance issues are a problem since the surgeons went spelunking in my right temporal lobe), cross my arms across my chest, hold it for 30 seconds, then look left, look up, look down, and look right (for five times). Then I do the same thing, with my eyes closed. If you’re healthy, you probably don’t give it a second thought. Because I have balance issues, that’s actually, physically beyond me on a bad day. On a good day, it’s enough to exhaust me almost as much as a trip to the gym. I honestly can’t imagine doing it at age 68 (the average glioblastoma survivor age). So, yeah, it might be worsening condition/disease progression; it might just be Wednesday.
