Find Your Tribe
The hardest, most painful adjustment to life, post-diagnosis, is to your mental health, especially in the context of your social life. A major pillar of 21st century life is the grand delusion that illness is the exception to the rule, not the rule. I suspect this instills the proper sense of entitlement to health and wellness that allows employers to demand unsustainable hours of overtime each week. After all, you’re healthy, it’s just time! Ignore the mortality rate of pre-antibiotic generations that might suggest otherwise!
And then someone tells you not to leave the ER until a surgeon can speak to you, and your old life and friends are gone. Some parties (or pieces) of your old life may make it back; but that sense of mindlessly optimistic normality never, ever comes back. You are forever marked as “my friend with cancer” among friends and family that remain. Even though there are a ton of ways to retain some sense of that normality (a good therapist helps), most will only get you so far. As much as I hate to admit it, as an avowed misanthropic introvert; only other people can return that sensation to you.
One of the first pieces of advice I give to everyone asking me about cancer survival is to go to in-person support groups. And, in this, I am a little bit of a con-man, because I had to spend a lot of time finding my tribe, and we don’t really match well on paper. Like everyone else; I started with the groups I identified with most. At Adolescent/Young Adult support groups; I’m usually the person with the weirdest, most-dangerous disease, and I’ve usually been living with cancer for far longer than the next-most experienced survivor. At brain tumor support groups, the next-oldest person is twice my age, and they usually got the standard cancer story — they bought an RV to enjoy their hard-earned retirement, and a brain tumor dashed their hopes (I’ve had this thing since before I could vote, a viable career is as distant as some freak astronomical event, at this point). Not that I’m going to bash any group willing to have me, nor am I going to play the Oppression Olympics about who has it worse, but I had to search a while to find my tribe, and, shockingly; it was just a general cancer support group. The key word in that idiom that so many ableds overlook is “support,” and, even though I appreciate everything every other group has given me; this is the group that taught me about the importance of unfiltered empathy, inclusivity, and diversity. Not that I probably wouldn’t have learned those lessons elsewhere, but it took a support group that’s open to everyone on Planet Cancer to show me other people who are long-past their expiration date. Who are also in experimental treatment. Who, somehow, have survived more brain tumors than me. Admittedly, it took a few visits for them to start restoring my sense of normality, but I can pinpoint my exact, “I’m among my people” moment: when a colorectal cancer (I believe, no one cards you on the way in) survivor yelped, and leapt up to walk a few laps around the room, and everyone just nodded as it happened and remarked about how awful muscle cramps on chemo are. To understand what that did for me, you have to understand; I get bad leg cramps if I sit or lie down for too long. It’s not terribly uncommon for me to get up at 2 am to walk a few paces to stave off cramps (this is improving, but it still happens). And, until that moment, I’d somehow just assumed that I was the only person it happened to. And, for a brief moment, I suddenly was no longer alone. I’ve been there weekly ever since, because, for a few precious hours each week; I got to be an average, comparatively normal guy. Or, until March of 2020, anyway.
Another hard truth of life on Planet Cancer is that, as a disenfranchised, largely-ignored minority, news of our brief lives rarely makes the national news. And COVID has been a horror story for the cancer community. It was a rarity to go a month without hearing that someone else died, either from COVID complications, or by putting off care out of fear of COVID. I rarely had the emotional strength to find out the distinction, when everyone you know is dying, fear and depression tend to deter inquiries.
My “canary in the coal mine” for the question, “Is it safe for me to go out?” is my general cancer survivor group, which is populated by people who have been through too much to risk their existence on some pesky microbe. Fortunately, we got the go-ahead from the powers that be to resume our meetings. Which is both great and terrible; great because, once again, I get an hour or two each week where I can be almost normal. It’s terrible because, as Jenna pointed out, we’re two out of maybe a half-dozen of the Stage 4 survivors who made it out of 2020 alive. I suspect we’ll collectively struggle with our survivor’s guilt in the coming months. But, critically, we won’t be alone. Survival is a lonely experience, and it frequently warps and changes you into something you previously wouldn’t recognize in the mirror, and the sensation that you won’t be alone in the ordeal is genuinely priceless. And, even today, someone else talked about feeling bad for needing to go on antidepressants; a dozen of us told her that we were also on antidepressants. Which shouldn’t be a major admission or moment of honesty, any more than a diabetic support group discussing diet or insulin options should be, but I know, when you’re in your personal hell, you tend to assume you’re alone. And no one should ever feel that way, even if it’s just the reassurance that cancer has a significant psychiatric component, and finding help with that, in any form, is a good thing.