The Elephant in the Room is Cancer. Tea is the Relief Conversation Provides.

Words Are Individualized

by Liz HilesSurvivor, Bladder CancerOctober 18, 2023View more posts from Liz Hiles

These words and phrases often refer to people with cancer diagnoses and their experiences. Unfortunately, no consensus exists on the best language to describe people facing cancer.

The language that individuals describe is as different as the individuals diagnosed. While we accept the differences in patients’ physical, emotional, and support needs, there is little to no empathy, compassion, awareness, or care about how someone wants to be described.

No one ever seems to get it right.

Incorporating verbal inclusivity may be impossible in the clinical setting. Still, providers could at least stop talking about us as if we were inanimate objects and not actually sitting right there.

When it comes to offering support to someone facing cancer, we always encourage others to ASK what the person needs OR offer something specific, like doing laundry for them. How has this not extended to how we want to be labeled?! If we even want to be labeled at all! (Newsflash, many do not want to put cancer labels on ourselves)

While the NCCS stipulates that the definition of survivor is anyone who has faced cancer from diagnosis to death, the latter we all hope is much further off than it sometimes is; many people do not see themselves as that. Many of my friends say they are “living with cancer” because they have a chronic, incurable diagnosis or simply because, despite being years out from active treatment, they still deal daily with the side effects of the life-saving treatments they received—a bit of “damned if you do and damned if you don’t.”

You see, I was a survivor LONG before my cancer diagnosis! LONG before! I survived abuse, caring for and burying a parent, homelessness, and much more. When I discovered I had bladder cancer, I finally started having an upswing in life and was reclaiming my life for my own once again. I thought, “Are you fucking kidding me?! Can I please catch a break?!”

No break was to be had, though, and no one was kidding.

At the time, I didn’t even know if I could become more of a survivor. How much could a woman take?! I didn’t even know bladder cancer existed!

Friends of mine use every word under the sun to describe what they’ve been through. Some friends are very adamantly opposed to specific words and phrases as well. I do not share those feelings.

Cancer was and is a journey and an experience for me. Some people don’t like the word journey because it never ends, but I’ve always heard the expression that life’s a journey that never ends—both are true. Life and your cancer experience occupy certain parts of your life more strongly than others, demanding more attention than we may want to give it. Yet, simultaneously, both end when that final sleep arrives. The final sleep that no AYA wants to think about. The one that no one talks about.

Many people don’t want to be considered brave, courageous, or inspirational because, at their core, those things typically require making a choice. Cancer is not a choice. There is no choice between life and death. Cancer is thrust upon us, and we are forced to make the best of the situation until no situation is left. There is no bravery, no courage, no inspiration. There is only putting on the racing blinders and plowing straight through it until we either “win” or die trying.

For various reasons, others still don’t relate to all the terms associated with war. Many of the people I know never felt like they were fighting anything. This also was not the case for me. I felt like I was fighting even before my actual diagnosis. For over two years, I tried to get a diagnosis, but I didn’t send out the right flares or set off the right kind of alarms. The fighter and warrior terms really hit home for me.

I remember looking up “bladder cancer awareness colors” through tears in one of the earliest days after diagnosis. I came across a blue, marigold yellow, and purple ribbon with a woman’s fist in the center of it on a Google image search. It was a lapel pin. I zoomed in to see the gold-tone letters on one of the ribbon tails. “Fight like a girl,” it read.

I dug deeper into the website. The Fight Like A Girl Club was filled with stories of women showing their strength and supporting each other through all kinds of physical and mental health situations. I was immediately drawn to it and ordered the lapel pin.

“Fight like a girl” quickly became a running theme throughout my treatment. I’ve also carried it through to the rest of my life post-cancer. I have a “Kickin’ Cancer’s Ass” playlist and have found several songs with “fight like a girl” as the title. I even recently got a tattoo with the phrase on it. Forever there to remind me not only that I’m strong but that I’m stronger than I ever thought. Still, I must remind myself of all the women who stand with and beside me in all my struggles. My supporters are near and far. Fuck yeah, I’m a warrior! Through and through!

Still, I think my favorite post-cancer title that I will claim over and over again is “Cancer Ass Kicker.” I love it because it is true.

When I got my diagnosis, it was a Friday. I spent three to four days crying and trying to figure out what I was going to do. I decided I would NOT die and went to work to get things in place. I wrote a lengthy social media post and shared my news with people in my life near and far. I figured out what I wanted my treatment plan to be with my care team. I devised a fundraiser for cancer research with the American Association for Cancer Research and an awareness campaign that I ran the entire month of my surgery date. I asked friends, family, coworkers, and acquaintances to wear blue, marigold yellow, and purple on my surgery date and to post pictures on social media and tag me in them for visibility. Many enlisted their families and other friends in doing these things, too. I was never a quiet or passive person, and facing this disease would not change that.

I set my mind to kicking cancer’s ass from the beginning, and that is exactly what I did. My urology oncology surgeon and my medical oncologist have told me separately that my diagnosis was such a late stage and my tumor was so large and involved that they did not think I would make it. Thankfully, neither of them shared this while I was going through active treatment, and it was closer to my five-year mark that they shared this. They both believe my attitude and determination were essential factors in my survival. I do not doubt it.

Oh, there were naysayers. Some people faded into the background or disappeared altogether. Some people disagreed with my approach, but I knew even then just how much words mattered, and I did not want that energy in my sphere, especially while I was literally fighting for my life! So I let them fade away and go.

I kept things moving and surrounded myself with positivity and people who uplifted me. I survived. The words I used mattered. The language I allowed around me mattered. I am alive today because I held firm in my beliefs and did not let others’ words bring me down.

If you take nothing else from what I shared today, know this: the language you want to use is the only thing that matters. It is what will make you a survivor.

The second thing you should take with you is that labels are extremely individualized under normal, non-cancer-y situations. Throw cancer in the mix, and it becomes even more individualized. When someone corrects you or asks you to use specific language, it is not your position to question or correct it. It is your position to accept, respect, and support it. Allow the survivor to be labeled in a way that makes them feel comfortable and empowered.

I will forever fight like a girl and be a cancer ass kicker. I hope you will forever be whatever words or phrases empower you to survive, thrive, and seize every day beyond your diagnosis that you possibly can despite any other obstacles that may throw themselves in your way.


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