When I was initially diagnosed, I began seeing this term in many of my support groups. I’m sure it’s no surprise to anyone that cancer metsters/thrivers have their own jargon that helps to explain the shared experiences. It’s sometimes like learning a new language, especially the acronyms. I’ve also found that the jargon changes in various parts of the country and the world (for example, in the UK, metastatic cancer is referred to as secondary cancer).
Some background/context …
When one is in “active treatment,” which usually involves IV chemo, the scans happen all the time. When I say all the time, I really mean all the time. I had so many MRIs and CTs and bone scans and x-rays crammed into a month or two in 2017, I’m surprised I’m not glowing.
And then, you fall off a cliff.
The end of “active treatment” really does feel like free falling without a parachute or any knowledge of how far down the bottom actually is.
Even though “active treatment” can be overwhelming and painful and horrifying and will forever be blurry because of all the medication, it also feels productive. With each and every IV or pill or even the side effects, it feels like something is being DONE about the crazy cancer cells. Family and friends rally around you, meals are delivered, and even though sometimes putting one foot in front of the other takes strength you didn’t know you had, it can feel triumphant when you reach each milestone.
And then it stops.
Well, treatment never really stops for us metsters, but everything slows waaaaayyyyy down once that initial “active treatment” ends. Scans go from weekly to monthly to quarterly and, now, every 6 months for me. Check ins with the medical oncologist become spread out too and the safety net that you began to expect, to rely upon, is missing.
At first, that return to “real life” where cancer isn’t front and center, feels like you are visiting an alternate reality or even another planet. All of a sudden, you have to do laundry and figure out what’s for dinner (actually, I still don’t do this, thanks, Mom!!!) and get everyone up in the morning and settle sibling squabbles. What?!?
Life just goes on and you settle into something that resembles life, irrevocably altered, but routine and “normal.” This season is seductive. It’s easy to think, maybe I dreamed it. Maybe it was a mistake. Maybe I don’t really have cancer. Maybe everything is all good now.
And then another scan comes up on the calendar.
I found the picture I pinned at the top of this post at some point while browsing online and I love it. Scanxiety is usually defined as “uneasiness waiting for the results of scans after cancer treatment.” Since I’ll never be done with treatment, I usually think of scanxiety as the uneasiness waiting for the results of scans after active treatment is completed in order to determine whether progression has occurred. Maybe I’ll think of a way to make that more catchy and less wordy, but it’s a doozy. Like really awful.
For those of us living with cancer, scanxiety truly isn’t about being afraid of the unknown, but worrying about a reoccurance of the most horrible thing that’s ever happened. Once the news of a cancer diagnosis has turned your life upside down, there is no longer the ability to live or think as though the worst won’t happen, that the sky won’t fall again. Once that has happened, it feels imminent, at every moment. Every ache, every pain, every time something feels weird, the inescapable conclusion is that it must be back, it must be growing, it must be taking over and maybe this time is the last time, this time is when it will kill me.
The only way to cope is through. The only way to calm the racing thoughts is to get the call that everything is ok, or everything is not ok, but at least you have the answer and know what you are facing.
The next time you hear that someone is facing a scan, that someone will be learning about whether they will have a reprieve from the cancer that infects their body, understand that that person is barely holding themselves upright. Offer to help. Offer a hug, offer a distraction, offer your presence. Check on them and then check again.
They need it.