I went to my local cancer support group today. Y’know, like you do (everyone out there shaking their heads in disbelief is in for a rude awakening).
Two big things: First, the social worker openly sort-of acknowledged I wasn’t some sort of grief tourist. After I’ve been going a month. There’s a part of me that wants to be offended and outraged that I was discounted — internally — by a white, able-bodied woman for a month. There’s another part of me — that has survived 50-odd infusions, 60 days of oral chemo, and 35 days of radiation — that wants to scream, “Really?” But, I’ve also encountered enough skepticism — not only from other people, but from myself. (It’s a horrifying calculation when you realize you’d have better odds of winning the lottery than sitting in an infusion center with an experimental drug coursing through your veins (and brains))(cancer is an extremely common thing, brain cancers are rare). But, realistically, the social worker (who, in all fairness, has never been off-putting, and has been mostly-open every time I’ve seen her; it wasn’t until she sort-of implied holding back on emotional investment that I said, “OH, that explains a lot”) wasn’t totally wrong in her assumptions; there’s a weird, unnecessary mystique surrounding dying, cancer, and the grief process. There’s a 33–40% chance you’ll be in an oncologist’s office before you depart this vale of tears. But, it does bring about a weird intersection between survivors and the upper class: exclusion. We need to get rid of that concept, immediately. HIV immediately started getting sociopolitical traction when wealthy businessmen and politicians realised they could get it from their poolboys and misstresses. Go ahead and prove me wrong; like the Trump Administration’s history in Ukrainian politics, the timeline is damning.
I bring this about because a new woman (this is the second thing) at the group discussed being diagnosed with breast cancer in September, and still waiting to hear back about biopsy results and potential treatments. And I could also see that everyone’s — including the social worker (who, for the record, is not a bad person or unpleasant — like most people in oncology, you can tell that she became more invested in me — it wasn’t anything verbal or anything, she just seemed a little less-guarded and more welcoming than I’d seen her)(for everyone involved in any level of oncology, your patients can tell, on a subconscious level, when you are not totally committed, and that tends to be a self-fulfilling prophecy) — first impulse was to run to this woman and offer their reassurances.
Except there are no reassurances with a broad class of diseases that is the second-leading cause of death in America. The very best comfort I was able to give was that the very worst — psychologically — phase of cancer is the period between diagnosis and treatment. And that, no matter the outcome, she’d be in a better place, mentally within a month.
Most cancer patients aren’t happy with that statement, just as most 11-year-olds aren’t happy with, “Well, it just didn’t work out” as a rationale for divorce, but both are accurate, within the broader view of the human life cycle.
You will die. As will every single person you’ve ever known, will know, or know right now. Once you actually believe that, you will live your life differently. It may seem an odd concept, but no one I have ever heard of died a disappointment — this was a comment at group today (and this is why you attend group support meetings; I am not doing this thing jutice) — they may not have earned enough money, or thought themselves the equal of their forebears pre-diagnosis — but your view of reality shifts in a way you would not believe when you are healthy. I kind of understand why culture and society fetishizes the terminally ill the way they do — we have made peace with the biggest, scariest, most-distal aspect of life; death. The thing everyone doesn’t realize, until they’re in the same place, is; you will, too. You won’t have any choice in the matter; it’s like puberty or arthritis — live long enough, it’ll happen naturally.
I have a friend who is training to be a “death doula,” which strikes me as being similar to a “puberty guide.” You can go ahead and train all you want and talk to all the people you want to, but the patient will arrive there, mentally, one way or another. Some help getting there might be nice, but the process is so unique for everyone, I can’t really imagine some sort of set training that’s going to cover a broad set of developments and twists that are going to be unique. I mean, you can get the broad strokes of it based on collective experience, but the reality on the ground is going to be dramatically different.
All of which is a very broad way of supporting the new central thesis of my life, that there is a great deal of unnecessary suspense involved in the cancer experience, and it’s harmful to everyone. This really comes into play in that worst time in any survivor’s life — the period between diagnosis and treatment. I told the woman in the group that this period was, psychologically, worse than treatment (well, barring the panic attacks at 2 am on chemo nights), but realized I could say more on the subject. So I am.
After you hear the words “Stage 4,” or “metastatic,” you do kind of mentally “go under.” And you don’t really start emerging until you get a call or a necromancer comes into the examination room with a clinical trial protocol. That’s when things start to clarify. And I don’t really know if I can put it any better than that — the specifics would limit the applicability of my advice, other than that the sort of uncertainty of “I may die horribly, or I may not” is worse than neuralgia, and, one way or another, that uncertainty will diminish with time.
You can plan on dying. You can plan on living. Inhabiting that gray area is hellish in a way healthy people can’t begin to understand. But they will. And, as with everything else in life, that suffering is temporary.