An online interaction the other day made me realize that there are some Americans (probably many other nationalities) who are under the rather unfortunate impression that if you’re not hooked up to an infusion machine, you’re fine, cancer over with.

If there is a single take-away from my writings — and the writings of countless survivors — it’s that, awful and horrible as treatment may be, it is only the start of your problems. If treatment isn’t effective or the disease comes back angry (or you can’t continue treatment), you die, horribly; which is bad and I certainly have no intention of going gentle into that good night. But, as far as the corporeal plane is concerned, your problems are over (whether that’s just the start of an entirely new set of disasters and catastrophes is unclear, but all my life experience would indicate that as a distinct probability). If you live, your troubles are just starting. I think this inclination to minimize the suffering of others is universal, but America has taken it so main-stream that we automatically seem to assume that, unless we’re holding our own innards in our hands, we’re fine. Which is probably why we are among the only five nations in the world without maternity leave. As long as that little free-loader isn’t actually getting out of you, we don’t care.

Same for cancer patients; unless we’re bleeding or visibly suffering cachexia, society doesn’t care.

Here’s a tip for my able-bodied friends; your friend with cancer is not going to be fine, ever again. The physical toll on us, alone, takes months — years to recover from. Also, you must go five years — minimum — without a recurrence or metastasis to be considered in remission. I’ve never been in remission at any point in my adult life, although I’ve gotten tantalizingly close. This is important if you or a loved one are a survivor — you get to be hyper-vigilant about your health for at least five years post-treatment. Even then, it’s hardly a guarantee (and the treatments carry a horrifically high risk of causing cancer)(best not to think of that one too much before signing the release forms) — I’ve known people who’ve gone 11 years without a twitch, and, suddenly, it’s back. When you hear the words, “It’s stage 4,” you will never, ever be fine for the rest of your life. Leaving aside the psychological/mental issues that come with the realization that your body literally tried to kill you (I read somewhere that 25% of survivors develop PTSD), there’s going to be some lasting physical issues. Which is kind of what happens when you cut off bits of your body, irradiate yourself, poison yourself, and hope for the best. Some of us lose limbs. Some of us, like myself, get hobbled as a result of treatment. Once you cross the abyss, there’s no coming back.

I have a transgender friend who enjoys pointing out that it shouldn’t be the job of minorities to educate majority members on stuff they should be able to figure out on their own. There’s a part of me that agrees with that sentiment, but, at the same time, until people are willing to come out and speak up and make their issues and views known, we’re going to be the great Other in society. Which is why I do these little PSAs periodically.

No, I am not in active treatment for cancer, at the moment. I am still recovering, because I spent a year in active treatment (which, in survivor treatment years, is nothing — I have a friend with leukemia who started treatment before me, and is still getting infusions). I was told by the neuropsychology researchers whose study I was in that it might take years to fully recover, neurologically. So, when someone says they’re a cancer survivor, your response shouldn’t be, “Well, you don’t have any tube in your arm; you’re fine,” (I realize that sexual assault survivor have had to put up with this mind-set for years, and society should be ashamed at that), it should be, “Are you alright? Is there anything I can do?” One of the best things I learned in med school was that Americans tend to see health as a binary sick/healthy issue, when, the first thing you learn in chemo is; it’s a spectrum that more resembles Maslow’s hierarchy, with a grave on one end, and a healthy, successful life on the other. Most of us tend to fall somewhere in the middle, and, if you’ve had a life-limiting diagnosis, that tends to make the tip of that pyramid beyond our feeble grasp. Forever.

So, no, I’m not in treatment, and I’m not likely to die in the next week or month, but that shouldn’t be read as, “I am healthy,” that should be taken as, “I am not likely to die in the next week or month, after that, it’s all up in the air.” Your response, as a currently-healthy person should be, “What can I do to help you make it after that point?” instead of, “You’re fine, walk it off.”

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Science journalist, cancer survivor, biomedical consultant, the “Wednesday Addams of travel writers.”

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