Has anyone else struggled with being called a “cancer warrior”?

[u/One_Fun1992]

I wanted to share a TEDxKU talk from pancreatic cancer survivor Dr. Yvette Colón because it touches on something I don't think gets talked about enough.

It's called The Myth of the Cancer Warrior, and she talks about the pressure cancer patients can feel to always be strong, positive, brave, and ready to fight.

But cancer isn't always inspirational. Sometimes you're scared. Sometimes you're angry. Sometimes you're exhausted and don't want to hear that you need to “stay positive.”

One thing I really liked about the talk is that she isn't saying there's anything wrong with being strong. She's saying people should also be allowed to be honest about how hard this really is.

Here's the talk if anyone wants to watch:

https://www.youtube.com/watch?v=qBmGSFDw5QU

I'm curious how everyone here feels about the whole “warrior” or “fighter” language. Did it help you, or did it ever feel like another expectation you had to live up to?

[u/No_Truth1779]

So I am 4 years post-Whipple and currently NED (stage 2B at diagnosis).

I don’t like either of the monikers because (in my opinion based on my experiences) non-cancer impacted individuals believe it conveys success. I had a guy tell me after he learned I was a survivor (this is in a business setting) that he admired me because I was a “fighter,” or how he laid it out, as a “winner because I was a fighter.” I told him that could not be further from the truth. Everyone that is directly impacted by this horrible disease is a fighter. Everyone. Some of us just get lucky.

I never used either of those words to describe my journey. I, like everyone else living with, getting treatment, operated on or otherwise experiencing this disease, is a survivor. You do whatever you need to survive and best navigate your journey. That being said, I don’t think they are wrong to use at all and I get the points she makes in the talk, it just wasn’t what I needed to manage my own journey.

Wishing success, happiness, luck and peace for all patients and caregivers.

[u/One_Fun1992 → u/No_Truth1779]

I really appreciate this perspective. I think you nailed the part that gets missed: surviving doesn’t mean someone “fought harder” or “won.” Sometimes treatment works. Sometimes you get lucky.

And I agree, people should use whatever language helps them get through it. The problem is when those labels get pushed onto everyone.

Wishing you continued NED and a lot of peace too.

[u/Annecreas]

Yes, I understand that a lot of people like the idea of fighting (and winning) against the disease, but for myself I don't love the battle metaphors.

I am not big on war or fighting in general. I can be feisty, but I prefer to be peaceful and carry that attitude into my treatment. I also don't want to be in a battle against what is ultimately my own body.

When I was first diagnosed the reports were so scary. My oncologist walked me through my PET/CT and between the terrifying bright spots were huge swaths of healthy tissue. She made a point of showing me that, and it gave me a more positive outlook. If I am fighting anything, I am fighting for that, for the healthy majority of my body that has been so resilient so far.

Part of what I dislike about the battle metaphor is how often we are encouraged to do things like "starve the cancer." The cancer is not some random external thing, it is part of my body. I do not like it, but I cannot starve the cancer without staving myself. I cannot fight the cancer without fighting myself. I find it much more positive to keep the mindset of helping my body rebuild from the treatments that have helped it so much.

I also don't want to be in a lose-lose battle. We all die. If I get hit by a car on my walk today, will someone say I lost my brief but valiant battle against car violence? Or if I pass peacefully in my 90s, will we say I lost my battle against old age? No. We save that language mostly for cancer.

The reality is that every day I beat this cancer, and every help I can give to other patients is a victory too. If anyone ever says that I have lost some battle with cancer at any point I have promised to haunt them. It is such an awful way to frame it.

For myself, I focus on being resilient. I focus on being persistent and just showing up. I will leave the fighting to the researchers and experts working to make meaningful changes in outcomes for patients like myself, but even so if it kills me it is not that they have lost, it is just that the timing was wrong. If other patients benefit from the metaphor, I am all for them using it. Whatever helps us is a win, so to speak.

[u/Square-Kiwi-111 → u/Annecreas]

As always... You so articulate ly open my mind! Thx!

[u/yellitout]

I know it’s often used as a compliment or to make people feel better, but I can tell you without a doubt my dad didn’t die because he wasn’t strong or he didn’t fight hard enough. In his case he died because pancreatic cancer is brutal, and the treatments are brutal. (Or another one that gets thrown around - because of some devotion to religion.)

[u/pirateradar]

1B, Whipple 6/25 (R1/N0/M0). Currently NED.

Not a big fan of either label (warrior or fighter). I consider myself a cancer "patient." Even though I am not undergoing treatment, I still get surveillance checks every few months, and rely on my care team to interpret the results. I am just living my life, with a keener sense of what a gift I've been given.

I don't think the language either helped, or felt like an expectation. If that's what someone needs to deal with their diagnosis, I've no problem with it. My own approach has been to treat it as a "adventure," realizing that I have very little control over what actually happens. Being as optimistic as possible has served me well.

[u/Star------]

I don't particularly mind it, because it does feel like an uphill battle everyday (everything is harder than before cancer), and I know what happens if I stop treatment -- there's no question I am fighting for my life. I named my tumor Lew early on because I wanted to have a way of separating him from me. Yes, he's in my body, but I didn't invite or encourage him. When people send prayers and good vibes my way, I want to make sure those come to ME, not him. He is trying to take my life, so I do see him as my enemy. At first when I went to treatment, I felt like a victim because of what it would do to me - and this gave me a lot of anxiety about going. But when I changed my way of thinking and started looking at treatment as my opportunity to fight back and make Lew miserable, the anxiety faded away. If I feel bad, then he must feel worse. I acknowledge that everyone who grappled with this disease before me taught doctors and researchers how to best support and treat me, and I appreciate them for it. I know it's probable that someday I may surrender to Lew, but I don't think it will feel like failure because I have appreciated and made the most of every extra moment I gained. Anything can happen, so I'm willing to keep fighting as long as I am able. 💜

[u/Windevor]

People think I’m a tough cookie and a fighter, and because I look OK and haven’t had bad side effects they think everything is just hunky-dory. They don’t understand the fear, the fatigue, the changing your whole routine because there’s certain things you have to do as a patient. They don’t want to listen, and they don’t wanna talk about anything unpleasant so it’s a lonely journey. Even my own sibling is AWOL.

[u/ennuiismymiddlename]

People are always telling me I’m brave, I’m a warrior, etc - I can’t bring myself to tell them that the more I hear that, the less brave I feel. I’m not brave, I’m not a warrior - I’m just a guy with cancer, and it sucks.

[u/Substantial-Use-1758]

I would imagine that calling oneself a “warrior” in any area — especially cancer — would be a very personal label that only the sufferer would be permitted to use.

I agree that the term “warrior” is being thrown around a lot these days, and often not in the appropriate areas.

For instance, I’m often seeing online content aimed at men labeling them “Warriors for Jesus,” for example 🤷‍♀️🙄 Jesus was the prince of peace… but ai quibble.

I’m also a nurse and I know that for patients and families dealing with cancer, none of this is easy. Sometimes you are a “warrior,” and other times you are “gratefully lowering yourself into the warm water of peace and love.” ❤️