How Do You Define "Survivor"?

Wednesday, June 26, 2013 - 2:08pm

On paper, it's a simple task. Just grab a dictionary and flip to S.

But in practice, it's rarely easy.

My brother, David, who was diagnosed with brain cancer in 2011, defines a survivor like himself as “anyone living with cancer or anyone who has been cured of it.”

My mother, Joanne, a colon cancer survivor since 2004, refers to a three-part definition she recently found online:

  1. To remain alive or in existence.
  2. To carry on despite hardships or trauma; persevere.
  3. To remain functional or usable.

She envisions these three definitions as steps of survivorship, as they were in her case. “When the C diagnosis comes, it is all about remaining alive. Just scared. Then moving to 'carrying on' despite surgery, treatment, and testing... then finally coming to terms with the horrible disease sharing space in your body and deciding to remain 'functional and usable'.” Examples of the latter might include “going back to work, being a mom, going back to school, and volunteering.”

Roswell Park Cancer Institute, which has treated both of them, tends to embrace a wide definition of survivor, noting that in some cases, caregivers should also be included in the category of survivors. After all, they too have to remain healthy and alive, to carry on, and to remain functional in their new role.

As Susan Sharcot, a social worker within Roswell Park's Psychosocial Oncology Department, says, “I consider caregivers as secondary clients... who are oftentimes in need of the help and the support. Sometimes more so.”

It can be difficult to convince a caregiver that even though the outside world may not consider them the “survivor,” they still face the same challenges. As Sharcot reminds them, “You're the glue. And without the glue, everything's going to fall apart.”

Sharcot also points out that caregivers are experiencing many of the same aspects of trauma as the survivor in question—and cancer, in her eyes, is a trauma for all involved. “All of a sudden, your assumption about life and how it's supposed to be gets turned on its head. And you have to rearrange all of those assumptions back into an order that once again makes sense. So what is survivorship? I guess it's a way of putting things back in order, somehow. And it's a process.”

Sharcot adds that taking the words “survivor” and “caregiver” literally can sometimes even hamper this process, as they imply certain qualities that don't seem to fit.

Take the cultural expectations attached to the word “survivor,” she says. “When you think of TV–they're sort of wily people, and strong, and self-sufficient. If you don't meet those expectations, does that mean you're a failure? No.”

In the meantime, the word “caregiver” seems to suggest an ideal that falls somewhere between the Energizer Bunny and the Virgin Mary, a self-sufficient source of unconditional love. In reality, the main responsibility of many caregivers is to be the designated asker-for-help, delegating tasks to an army of loved ones—and to do so, they need more love and support than they've ever needed before. Much like the survivors for whom they're caregiving.

It would seem that for some patients and caregivers, the biggest challenge is not to live up to the labels, but to learn how to just be themselves again.

In the future, we may need to invent new nouns and verbs for all involved in this special situation. But in the meantime, if you haven't seen a definition you like here, you might enjoy reading the many offered by Roswell Park's Facebook community. Below, you'll find some of our favorites. To add your own, please visit us on Facebook or post your comment below!

"It could mean someone who is now cancer free or the loved one of someone who is cancer free because they share in their treatment also! Either way it is a wonderful post to wear!"
- Rose

"Survivor to me means the ones who helped me through my ongoing fight are the true SURVIVORS. My family and my friends. Me...I am a 'THRIVER'."
- Kathleen

"Survivor means that you made it through a physical, emotional, and spiritual battle. Whether you battled well or whether the battle was more than you could take sometimes, you survived. You are alive. Surviving means adjusting to life after battle scars. Surviving means realizing you faced your fears. Surviving means realizing that you are stronger and more beautiful than you ever realized. Surviving means thanking those who helped you get to where you are. Surviving means living with a fresh perspective on life. Surviving means going back to a life without constant treatment-but maybe that life has power and love and joy infused in it that wasn't there before. Forever changed. The blessings of cancer. Who would have thought!"
- Esther

"It means I have received multiple blessings: living in this country, having the technology we do, generations of scientific research, intelligence and dedication of the doctors, nurses and support staff, family and friends praying and supporting me, roads and automobiles and fuel to take me to treatment, thank you all. I have been blessed."

- Roger

"It means seeing the world and all the amazing people in my life in a whole new way. It means being grateful for every minute more that I've been given."
- Margaret

"To survive means to get the most out of everyday, thank God in the morning for waking up to a new day and at night for a good day, even if you did not feel good.. thank your doctors and caregivers every chance you get, and most of all, stay strong and try to live a healthier lifestyle and donate some time for the people who are currently in the fight."
- John

"The moment you are diagnosed with cancer is the day you are a SURVIVOR! I am 'almost' a 3 year Stage 2 Breast cancer survivor. I have always been a strong person full of life and happiness, but now I see everything a little different after surgery, chemo, radiation and reconstruction…My scars are a reminder of how brave and strong I am."
- Monica

"July will be 2 years since my diagnosis of stage 4 breast cancer. I refuse to allow cancer to take over my life. I am blessed with WONDERFUL doctors and nurses at Roswell. While right now, there is no cure, my first treatment worked for 13 months, and the second treatment is still going strong! I am thankful for each day, each person in my life, each memory we make. I just finished my first year of nursing school -- a year from now, I will be an RN, and hopefully will be gainfully employed helping others."
- Patti

"My mom is an 18 year survivor of stage 3 breast cancer. She fought that monster every inch of the way… she is surviving losing her husband of 56 years. She now fights heart disease and kidney failure. But just yesterday, at age 78, she challenged the grandchildren to a wild game of horseshoes. She won, of course! She's a fighter."
- Donna

"A person who defies the odds against all odds and living to tell the tale."
- Emelita

"One year later after a breast cancer diagnosis [and] and ten years after Hodgkin's Disease … I am that much stronger, fighting and moving on! I'm different... More appreciative of life than ever, more amazed by goodness, grateful to those who surrounded me. Adjusting from the chaos of surgeries, a new body, medications, chemotherapy, etc... It all took a toll on me, but I'm realizing I just have won this battle -- I bear the scars as badges of honor. I will never take LIFE for granted."
- Kelly

" I beat the beast twice! (Knock wood, of course.)"
- Petrina

"It means "I won" !!!!"
- Scott 

Ryan Rose Weaver is a writer and teacher living in New York. Her younger brother, David, was diagnosed with an anaplastic astrocytoma in February 2011. He is currently being treated at Roswell Park Cancer Institute.

Read other posts by Ryan:

Our First Brain Tumor: Early Lessons Learned (September 2012) 
Adjusting to the New Normal (November 2012)
Back to Work: Coping With Cancer in the Workplace (January 2013)
Traveling With Cancer (January 2013)
What Should Siblings Do in the Face of Cancer? (February 2013)
Juggling Cancer and Classwork (March 2013)
Long Distance Love (April 2013)
Inviting Cancer Into Your Social Life (May 2013)