The Language of Cancer: Them’s (Not) Fightin’ Words! ​

The Language of Cancer: Them’s (Not) Fightin’ Words!

by Amanda Grabler, Copyright © August 2018


 

What words do you think about when you hear cancer? When you try to talk about cancer?

Fight. Win. Battle. War. Survive. Strong. Lost (their battle). Hostile. Combat. War on Cancer. Brave. Conquer.

You’ll Beat This. You’ve Got This. You’re the Strongest Woman (or Man) I Know. You’ll Win This. You Have a Positive Attitude. They lost their fight.

Purple leiomyosarcoma cancer ribbon with 2 crossed swords on top.

We know, as my Dad would say, military/fighting-related words are deeply entrenched in peoples’ psyche when it comes to dealing with cancer. And if you personally are in active treatment, or you’re a cancer survivor (and there’s another word), and this kind of terminology empowers you, we’re not asking you to change that.  But we are asking you to respect the idea that for some people, these words are demoralizing. That for some people, if they get to the point of needing hospice, no matter how soon or late that comes, they feel like they have “lost the battle” because they did not try hard enough. Because they didn’t want to “win” hard enough. That it is their fault that they are dying.

And as Eleanor from The Good Place would say, that’s bullshirt.

 

Science backs up the toxicity of the war metaphor. In several studies, patients primed to think of their cancer as an adversary reported more guilt, higher levels of depression and anxiety, and elevated pain.  (from We’re Finally Winning the Battle Against the Phrase ‘Battle with Cancer’:

http://www.slate.com/blogs/lexicon_valley/2015/07/30/how_battle_with_cancer_is_being_replaced_by_journey_with_cancer.html)

 

 

Teresa goes to her appointments. She gets her chemo. She takes all of her at-home pills (usually a minimum of 6 a day). It’s what she has to do. She’s not a warrior. She’s not waging a war. She is living with cancer. She doesn’t have a choice. She didn’t do something to get cancer. It’s not her fault.

Please don’t make either of us feel guilty by telling us your truths which you can’t actually promise. You see T as a strong person? The strongest person you know? Great! That doesn’t mean she’s going to survive a currently incurable cancer. It just doesn’t.  Hard truths are hard.

I want nothing more than to have 50 years more with Teresa. I cannot fathom a world where she doesn’t exist with me. Frankly, I don’t want to live in that world. It’s terrifying and depressing. She’s my other half. Finding her was like finding the other half of me that I didn’t even know I was missing. We’re that in sync and we have been from day 1.

She doesn’t want to leave. And she will try everything science offers to not leave.

And if the worst happens, don’t you dare say she lost her battle. Don’t you dare make it sound like she didn’t want to live enough. That she gave up. Because that is how those words come across on this side of things; for her and for me.

If strength was all that was needed to survive cancer, there wouldn’t be nearly so many deaths from cancer, because every cancer patient I’ve met wants to live. They go through hellish treatments to get to remission or no evidence of disease. But strength is not enough.

She is not a warrior. She is a person who wants to live.

We don’t share all the hard things on CaringBridge. I share the medical updates but I rarely share the emotion. It’s HARD. It’s even harder to share it because we’re not sure how many people really want to hear it.  Too many times, for whatever the hard news from someone may be, for too many people the response is “thoughts and prayers”. Then you’ve said/done something and you don’t have to keep thinking about it. But it doesn’t do anything for us. It’s empty words.

Being told you have cancer is traumatic. For the patient. For the loved ones. PTSD can follow.  Don’t make things worse by using language which can make a patient feel worse.**

  • If you’re trying to offer comfort, offer real comfort. Be there for us now. Be present. 
  • If you’re donating to cancer research, can you spare extra for finding a cure for Teresa’s type of cancer? If so, go here: https://lmsdr.org/donate-now/ and/or go here: https://smile.amazon.com/ and pick Leiomyosarcoma Support & Direct Research Foundation (LMSDR) (location, Tulsa, OK), as your choice for your charitable donation. (It may show up as Lmsarcoma Direct Research Foundation.)
  • If you don’t know how to talk about cancer without these type of words, help me find new words to replace the military language. It’s hard, yes. It’s not impossible. I have to consciously think about it every time I post, because it is ingrained in my mind too, but I choose not to use it. I don’t like the current language of cancer. Neither does Teresa.

**Said with the understanding that the battle language is what some patients choose to use, and again, we are not telling people who like it not to use it for themselves. We’re asking it to not be used for us. We’re asking that you find out what a person prefers first, because if they’re anything like us, they’ll go months, a year, possibly forever, without speaking up about how language choices can hurt (or heal). And just feeling worse by words people think are helping. We don’t speak up because we’re afraid you’ll walk away instead of being willing to stop for a moment and reconsider the words you use.

Support from friends and family is so important. For both of us. This is a trauma that doesn’t go away. Even if (hopefully when) Teresa gets told she is NED (No Evidence of Disease – there may still be disease but it is not detectable on scans), the trauma is still there. Every ache and pain – is it a normal part of aging or is it the cancer coming back?

From what I’ve read, so many friends and/or family members get exasperated when the cancer patient and/or their immediate family (which often includes the caregiver — who may be a spouse, parent, or child) are still thinking about and talking about cancer after reaching remission or an NED period. They don’t understand it’s a trauma that can never truly be escaped from unless that day comes along where science finds a real cure. In support groups, we see other patients talking about “scanxiety”.  The anxious feeling you get when you’re going for your next scan, no matter where you are in your treatment, because cancer is a trauma which never fully goes away.

More than anything I want Teresa to reach NED. But we will still have that scanxiety when she goes for her scans and labs. We will always carry the fear around that bad news (of varying degrees) will always be just around the corner.

We will always wonder how far ahead we can plan our lives.

Walk with us and help us find our new normal; without the battle rhetoric.

 


 

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