What Does Cancer Survivorship Mean?

~ Former Gryt Health employee Liz Hiles

Everyone in the cancer community seems to define the concept of survivorship differently.  Some feel that you only reach that point when you are disease-free and out of treatment, but what about those with chronic or Stage IV disease? What about those of us who are literally surviving with the disease while crawling through treatments – rounds of chemotherapy, immunotherapy and/or radiation, not to mention the plethora of surgical procedures cancer patients can end up having. 

The Oxford definition of a survivor is a person who survives, especially a person remaining alive after an event in which others have died; the remainder of a group of people or things; or a person who copes well with difficulties in their life. All of which are great definitions and could easily be applied to the cancer community.

However, the National Cancer Survivors’ Day Foundation defines “a survivor as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.”

Somehow, the cancer community didn’t even have a term for someone living with or after cancer until 1986 when the National Coalition for Cancer Survivorship (NCCS) found a “need for language that truly told the story of life after a cancer diagnosis.” That’s how long it took for science to develop treatments that worked and more people were surviving cancer, only to be plagued by a long list of secondary diagnoses that stemmed from their treatments. 

Many don’t like or appreciate the war and battlefield analogies and feel more comfortable with other terms. Personally, due to the experiences, I went through with my diagnosis, the “warrior” analogies do fit and feel comfortable for me. I recognize, appreciate, and acknowledge that it may not be everyone’s experience though. 

Survivorship is a funny thing in the cancer community. Besides the fact that it has not been thoroughly studied in the oncology sector, each survivor’s experience is truly as unique as they are. Each diagnosis, each set of treatments, and each individual person has a completely unique experience. If you happen to find someone with a similar story from start to finish, it’s like finding a cancer unicorn because the chances of that person actually existing are slim to none!

This year is the 35th annual National Cancer Survivors’ Day. Thirty-five years of celebrating the fact that humans have been facing and surviving cancer. It will be my 6th as a cancer survivor. 

Over the past year and a half, survivorship has changed immensely for me. As I moved through the pandemic, I was no longer willing to stay in a job where I was overworked, underpaid, and drastically underappreciated. It was running me into the ground. 

So, I decided to follow my heart. 

Ever since high school, I wanted to make a living with words. I graduated at a time when print media was becoming increasingly unpopular and writing teams, smaller and smaller. It wasn’t easy at the time to make a decent living writing. Also, the internet had not quite taken off yet and social media was non-existent. So, I studied sociology with the intent of working with nonprofit organizations, which is exactly what I did. I got to help people in areas I was naturally passionate about and make a difference. If I was lucky, I also got to utilize my love of words and writing while I was at it. 

My diagnosis came in 2016 and by 2019, I was getting paid to share my story on a website with international traffic and contributors. Then, during the pandemic, the situation at my job got worse. I was working in a healthcare setting, low on the ladder, and our workload quadrupled, the expected turnaround time on all things was exactly the same, the concerns of the administrative staff, of which I was a part, were completely ignored, there was an unspoken expectation that we would work overtime without getting paid just to stay on top of everything, and, to top it all off, as a cancer survivor, I was being forced to work in a densely populated area of the office where others were not adhering to masking or social distancing regulations put in place. It was not working for me.

That September, I left. I cashed out my retirement so I could pay my bills for a few months and purchased some office equipment, including a laptop – I had never owned one before! 

Then, I threw myself into freelancing. At first, I picked up contributor and moderating responsibilities with two additional sites under the company I was already writing for. I picked up a few one-off assignments and then I landed a regular freelancing gig with a small-town weekly publication in South Dakota. I felt like I was making headway plus, I was loving the freedom to work when my body allowed me to and take time for self-care when I needed it. 

A couple of months later, Gryt Health approached me with a created opportunity and perfect timing that I just could not resist. I started working with Gryt Health almost a year after I left my old position. I wasn’t looking for it, but there it was. 

Other than working more hours than I was as a freelancer, not much has changed. All of my positions are 100% remotely worked. I am able to cater my schedule to my needs. I don’t have to worry about taking off for a medical appointment or if medications are making me so nauseated that I have a migraine, I just let my team know what’s going on and I take the time I need to take care of myself. I’m beyond grateful. 

Also, during the pandemic, I’ve been able to join the cancer community, specifically the young adult (YA) cancer community, in a much bigger way. Since so many organizations were either already doing virtual events, or, like the rest of the world, pivoted to do virtual events, therefore I was able to make new connections and get more support for my life after cancer. 

Living alone and being unable to be with people I usually spent time with, especially since many of them were not following COVID-19 protocols, I was feeling isolated and overwhelmed. I was greatly lacking social connections. Many of my friends were not used to being on the computer all day like I was, so they didn’t want to Zoom after work. Not to mention many of them have significant others and children, so they were not living completely alone, as I was. 

The YA events became my sources of support and social time. Not only that, but I made the connections that saved me from losing my mind and helped me broaden my horizons to get to the point where I am today. 

These things really helped me work through some of my own cancer survivorship issues. They helped me become bolder and to stop settling for a life I no longer wanted to lead. These things helped me redefine what survivorship means to me. 

As those of us in the cancer community know all too well, life is too short to compromise on the things that are most important. Redefining survivorship helped me redefine my purpose and work towards living the life I really wanted to live all along. 

Now, I am fortunate enough to have several jobs where I get to write and create on a daily basis while networking with others who have had similar experiences, helping connect those who need resources and information with the sources that will best be able to benefit them and help facilitate support for humans going through challenging times. It is quite literally a dream come true. 

Survivorship for me looks like self-care, creativity, and better health on a daily basis. It is being able to take a break on a sunny day to enjoy the outdoors or taking a call from a friend in Australia who is experiencing personal challenges. It is having the freedom to work at 10 in the morning or at night, depending on what my body and life needs are on any given day. It is being able to work to improve the lives of myself and others by making survivorship issues known and helping to find solutions to the problems that many of us face, especially in concerns with the quality of life.

It is the freedom to choose if I volunteer or get paid for work I do in two health communities I’m very involved in. It is the freedom to choose if I have a working vacation or not. It is not being penalized for being bold or speaking my truth. 

So, I ask you: What does survivorship look like for you? Please share with us in the comments below. 

Liz was born and raised in Cincinnati, Ohio, and has been involved in advocacy since her youth. Being diagnosed with stage III-b bladder cancer in August 2016 at age 40 and subsequently having radical surgery with a urostomy placement just gave her more causes to advocate for. Liz dove into advocacy and ended up changing her career aspirations as a result of her diagnosis. In addition to serving on the Steven G. Cancer Foundation & Elephants & Tea Magazine‘s Patient Advisory Committee, she is involved with several other cancer or ostomy-related organizations and she is currently the Engagement Specialist at Gryt Health. She also is a regular contributor for BladderCancer.net, Type2Diabetes.com, and the West River Eagle. You can also read another article she wrote about survivorship on BladderCancer.net.

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