I’m going to take a controversial-yet-increasingly-popular view among survivors: life after cancer is just as difficult — if not moreso — as surviving the illness.
Don’t get me wrong, I’m not saying I wish I’d died (suicide is redundant with a terminal illness), or that cancer and its treatment isn’t horrifying and challenging (it is), but, once you “beat” it, you’re suddenly back out in the real world, and the extensive medical support group isn’t able to help. During cancer, your life shrinks to one, narrow goal: survive. It’s horrible, dark, and primal in many ways, but, at the same time; you are imbued with purpose, and you can devote every screed of intelligence and potential to that one purpose. Now, it should be noted that I’m not implying that people die from this disease due to lack of effort or willpower — if it were that simple, motivational speakers would be able to cure cancer. But, what I would say is, once you and your physicians find a course of treatment that seems to work, life becomes somewhat simpler; survive the course of treatment. Everything else can — and must — wait.
And then you’re suddenly able to attend social events on Tuesdays, instead of vomiting post-infusion. You can plan for a career, or retirement — except, you can’t, because your body is still treacherous, even though it isn’t in outright rebellion, and you’re completely wiped out because you’ve just survived a significant (multi-year, in some cases) treatment regimen that’s exhausting, and you now have a weird gap in your resume, and you’re still sick and tired.
One of the-most-asked questions I see in brain cancer support groups is, “Is it normal for a survivor to feel tired/nap so much?” I understand that arousal (that word has a different meaning in the medical world than it does in Danielle Steele novels) is an important neurological function, and friends and family are right to be a little concerned. But let’s put it into context.
I just spent a year in a hyper-intensive experimental chemo program, after six weeks of radiation treatment, after a neurosurgery. If I’d spent a year drinking heavily and then went to rehab, no one would bat an eye if I slept 12 hours a day — after all, I’d just spent a year in a Ke$ha song, that tends to fray one at the edges.
Except what I did was so much worse, on a physiological level. I was almost-literally microwaved, and actually-literally poisoned on a weekly basis. I hear from a lot of neurology patients about how miserably-tired they constantly feel; all I can say is, that’s a great example of how badly society tends to treat the neurodiverse crowd.
Just as death by brain cancer plays like a “Greatest Hits” combination of cancer and dementia; recovering from it is like a “Greatest Hits” of both severe brain damage and a crippling car accident. I get all the fun of physical therapy, combined with severe exhaustion and lack of focus from neurosurgical recovery. Yesterday, I griped about how horrible yoga is; today, I literally can not walk on my left side (surgery and radiation was aimed at my somatosensory lobe, so my left side’s wonky and off-balance)(and I’ve heard from folks who’ve done PT that it’s miserable and frequently makes you feel worse before you get better)(like chemo). The one upshot is that mere physical pain is no longer a significant deterrent, so, even though I can’t really walk today, I’ll figure it out and go back for more punishment. The recently-diagnosed are usually intimidated by the intricacies of palliative care, because if just one thing goes wrong, the whole system collapses. They don’t realize that’s how life itself works, though, and, when you’re looking at life post-cancer, it’s filled both with opportunities and perils, and it’s easy to get obsessed with the perils. Especially when you’re tired and grumpy every waking minute. Now, if you’ll excuse me, I have to go take a nap.