One of my favorite National Public Radio (NPR) programs to listen to is called A Way With Words. It’s a cheeky look at language in all of its glorious variations. It helped explain regional language differences that I encountered when I left my home in suburban Chicago and attended university 300 miles to the west in central Iowa.
In Chicago, we shoveled snow; ate breakfast, lunch, and dinner; and put our groceries in bags. In Iowa, we scooped snow; ate breakfast, dinner, and supper; and put our groceries in sacks. Go figure.
When you introduce “cancer” to your vocabulary, it comes with a host of other technical words, acronyms, and lingo that you have to learn. It also comes with descriptors and well-intentioned words of encouragement that may or may not be quite the right thing to say.
Before I go any further, a quick disclaimer: If you use these words or phrases to your benefit, more power to you. But not everyone reacts the same way, and that’s okay. It would be interesting to hear your perspectives.
Not long after my surgery and my first few undetectable PSA test results, I described myself as a “cancer survivor.” But a conversation with one of my readers made me rethink its use, as he was quite reluctant to use the term in his own case.
If you look at the definition of the word “survivor,” you come across slight variations of this:
A person who continues to live, especially despite being nearly killed or experiencing great danger or difficulty.
That definition implies that the danger or difficulty is behind you—”I survived the sinking of the Titanic“—but when you’re dealing with cancer, I don’t know that it is ever truly behind you, even if you’re in remission. Interestingly, the National Cancer Institute specifically has its own definition:
One who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease. In cancer, a person is considered to be a survivor from the time of diagnosis until the end of life.
I believe that, if you were to tell someone you just met, “I’m a cancer survivor,” they would conclude that the cancer and its treatment are behind you. It has a sense of finality to it when, in fact, for many of us, the treatments continue. For that reason, I shy away from calling myself a cancer survivor now even though, by the NCI’s definition, I would be a “survivor.” Maybe I’m just weird.
“You Got This”
When you first share your diagnosis with those in your circle, many very well-intentioned folks may offer a peppy, “Oh, man. Don’t worry. You got this!” without knowing what “this” is, or remotely understanding what’s involved with dealing with “this.”
That can be understandable, especially if you’ve never had someone in your life go through a cancer diagnosis and you don’t have the first-hand knowledge of what the experience is like. You think that you’re being supportive, but “You got this!” is often delivered at a time when the patient is scared shitless and doesn’t yet have enough knowledge to know if he really can “get this.”
When I shared that I was about to go through radiation therapy a year ago, “You got this!” was a common supportive response. I know that each was a sincere wish for all to go well, but my initial reaction was one of frustration driven more by my anxiety of what was to come.
I wanted to shout, “Don’t you think I would have ‘got this’ twelve years ago when I had my prostate plucked out?!? No. What I’ve got is recurrent cancer. That’s what I’ve got.” It definitely was my own anxiety talking, but I held my tongue and just thanked everyone for their support knowing that they really did care.
My recommendation to those in a support role to a cancer patient is not to come out of the gate like a cheerleader at a pep rally: “You got this! My uncle beat prostate cancer and you will too.” Each patient is unique and you have zero idea if that will be true. (Of course, there’s the, “My uncle died from prostate cancer,” too, but that’s an entirely different discussion.)
Instead, offer an ear and listen to the cancer patient. Ask broad questions, understanding that all of this is new to the patient and he may not be able to answer. Acknowledge the diagnosis or next treatment phase and ask how you can support them. They may not be able to answer that, either, so offer suggestions—I’ll watch your dog, go to the grocery store, take you to your first appointment, etc.—and just let him know you’ll be there when needed. Having my friend as moral support at my first radiation session was enormously helpful and comforting.
Terms of War
We often hear terms of war used to describe cancer patients: They’re “warriors fighting a battle.” Personally, I’m not a fan of “warrior,” “fighter,” or “battle.” I’m simply a patient experiencing and managing cancer, nothing more.
Not long after former President Jimmy Carter announced that he was entering hospice, this article was released, and it spoke about this very topic.
Why ‘lost their battle’ with serious illness is the wrong thing to say
Using words like “fighter” or “warrior” may lead the patient (and perhaps some family members) to feel that he’s failed if the cancer progresses. There can be a self-imposed and external pressure to “fight harder,” when the reality of the situation may be much different. His mind may simply not have the power to overcome what’s happening inside his body.
Instead, one Johns Hopkins professor suggests using the word “advocate” instead. I like that.
Being an advocate doesn’t mean passivity. It doesn’t mean hopelessness. It does, however, mean that we can gain some power over the cancer and our quality of life. We can say, “Nope. I’m advocating for my own destiny,” and that includes saying how and when we’ll be treated, as well as deciding when enough is enough.
Okay. You’re going to love the irony in this one, reading this on a site called Dan’s Journey through Prostate Cancer.
“Journey” sounds so pleasant, like we’re embarking on a Tanzanian safari, a trip across Europe on the Orient Express, walking along the Great Wall of China, or on one of my North American road trips. Cancer is none of those things.
If I were to start this blog over, I would likely name it Dan’s Prostate Cancer Experience. That would be more reflective of what’s really happening. Oh well.
This wasn’t meant to discount the words that you use to get through this prostate cancer experience. It was meant as a fun(?) and hopefully thought-provoking look at the language of cancer. Words have meaning, and sometimes those words have different meanings to different people.
What words or phrases have stuck out in your own cancer experience? Those that you embrace, and those that annoy the crap out of you? Please consider sharing them in the comments below.
It’s time for lunch/dinner, so I’ll close for now.
Header Image: San Diego Bay and Skyline from Cabrillo National Monument