From the mouths of survivors: Don’t call it a fight
Cancer patients almost always use metaphors when talking or writing about their experience. The most common metaphor casts the patient as a fighter or warrior and the experience as a battle. The second most common metaphor frames the experience as a journey, according to a UK analysis of online cancer forums.
The battle metaphor has fallen under fire of late because it suggests that patients who “lose” to cancer didn’t fight hard enough. The journey metaphor seems preferable but doesn’t resonate with patients who define a journey as an adventure willingly embarked upon.
While the UK analysis shows that many cancer patients embrace battle and journey metaphors, not all current or former patients identify with them. Here, four women discuss their choice of metaphors, symbols and storytelling devices to frame their experience with breast cancer.
Aniela McGuinness, 34, Hollywood, Fla.
Having lost her mother to ovarian cancer the year before her breast cancer diagnosis, McGuinness recoiled the first time someone called her a survivor. Her friend Nora McMahon didn’t like the term, either, so the two came up with a whole new cancer glossary and founded CancerGrad.org.
“What else can you call a person who’s finished with cancer? We came up with ‘cancer grad’ and spent about six months refining the metaphor and the terminology. Cancer sucks. We aren’t trying to make light of it. But if you go into it thinking of it as an education or a series of lessons, instead of a battle, it might help. What we came up with is the idea of going to college: It’s scary; it’s expensive; it’s hard. ‘Survivor’ is a really heavy word that connotes war or major trauma. My other problem with it is, the moment my mom died, that title was revoked. So we changed all the language. Survivors are graduates. Mom is studying abroad. Your major is the type of cancer you have. As most cancer grads will tell you, when you meet a grad with your major (diagnosis), it’s the same feeling you have when you find someone who went to your alma mater, and you end up reminiscing about throwing up from chemo cocktails. All the parallels are there, right down to debt you graduate with.” Janet Loveland, 56, Southaven, Miss.
When a well-meaning doctor gave Loveland a binder full of information about her “cancer journey,” the metaphor rubbed her the wrong way. It wasn’t so much the metaphor itself as the presumption of defining her experience. She thinks of breast cancer as just part of her life story. It was a pivotal chapter, though. She even has a title for it.
“I called it ‘My summer on the front porch.’ One of the biggest blessings of my experience is it forced me to slow down. It was humbling but necessary. I had eight rounds of chemo over four months, and during that time, I couldn’t do much physically. But I could get out of bed, and by leaning on the wall I could inch along and make it to the front porch. I had a beautiful view. I put out suet cakes and birdseed, and I used a book to learn how to identify birds. It sounds so weird to say it, but having cancer was a positive experience for me. Through it all, I found something I loved, and still do, which is bird watching. I learned that I was more deeply loved by more people than I had any idea. It was definitely life-changing, but it was all for the good.”
AnnMarie Giannino-Otis, 45, Syracuse, N.Y.
At 4’11” tall, Giannino-Otis says she has “no choice” but to wear high heels, so it’s a good thing she enjoys them. Fittingly, shoes became symbolic as she went through breast cancer treatment, and she became known at the hospital as “the diva in high heels.” She chronicles the experience in her blog, Stupid Dumb Breast Cancer.
“My friend’s daughter, Riley, always used to go to my closet and try on my shoes. She started it all by bringing me a pair of sparkly pink stilettos to wear to surgery. Here I am in this horrible hospital gown about to have a mastectomy, but I have on 6-inch stilettos and a smile. After that, people started bringing me shoes. They didn’t bring me casseroles; they brought me shoes. It became a thing. I ended up with 25 pairs. For me, stilettos became a metaphor for having the power to stand on my own two feet – although sometimes I couldn’t put them on unassisted. There’s one picture of me looking like death warmed over with one person on each side of me for support. I stood up for a few seconds – just long enough to take the picture – and sat right back down. It gave me, and those around me, a little bit of hope. I’ve since passed along 21 pairs of shoes to other women who have cancer. For my last treatment, I was so ready to move on. I wore a pair of Old Navy dollar flip flops.” Dixie Henderson, 65, Memphis
Henderson has had breast cancer twice. Her odds of survival the second time were initially only 15 percent but rose to 40 percent with stem cell transplantation. She got through the treatment using visualizations and a series of metaphors that started when a nurse told her one of her medications was derived from an Amazon plant.
“I had this little tape player in my hospital room to listen to calming music, and the tape I’d popped in was called Sounds from the Amazon. When the nurse told me my medicine was from there, I thought, ‘This is perfect.’ I pictured myself floating on a canoe in the Amazon, and I imagined the medicine moving through my body the same way, taking away all the cancer. After that, I began to visualize different things. I imagined billy goats chomping up all the cancer cells and I’d cheer them on – ‘Go, billy goats, go!’ My dad had a dairy goat farm and loved that analogy. The next one was Ms. Pac-Man. I’d picture her going in and chomping all the cancer cells. I kind of keep all this stuff to myself because it sounds crazy, but it worked for me. I ended up finishing the stem cell treatment a day early and, obviously, I’m still here 20 years later.”