In the first part of this conversation series, Georgia poets Anya Silver and Sara Hughes discussed their friendship, how to establish boundaries with students, and the desire to normalize cancer for others. In this second, brief section, Anya and Sara discuss their general cancer experiences, the difference between a stage 2 diagnosis and a stage 4 diagnosis, and the faulty rhetoric that surrounds cancer.
Sara: My cancer diagnosis forced me to recognize that I actually didn’t have any control over my life. I didn’t know if the chemo would work, and my oncologist said, “There is no cure. There is only treatment. Sometimes the treatment works. Sometimes it doesn’t.” She wasn’t being cruel, just honest. She was forcing me to face reality. But after the tests came back and I found out my cancer was stage 2, and I started my treatment plan, I started noticing that people treat cancer patients differently based on their stage. I’m not just talking about how oncologists and nurses treat cancer patients, but other people in general.
Anya: For me, being stage 4 is really different from other stages. When you have advanced cancer, you fall out of the narrative of cancer that people have created in America in which breast cancer is just a difficult but temporary bump in the road that you will survive. I bet you got that a lot.
Sara: I did.
Anya: But that narrative elides the fact that there is no cure, and we don’t know who will metastasize and who won’t. So when you’re stage four, you’re the “not-survivor”—you’re the loser. Not only are you an outsider among healthy people, but you’re also an outsider in the breast cancer community. It’s a really lonely feeling. I explore that particular experience in my writing. I want to examine what it’s like to live at the margins, even in a marginalized community. On the other hand, my whole identity is not “someone with cancer.” I’m a whole person with a whole life. Our culture looks at people with advanced cancer as walking corpses, and I really hate that. But you probably had a very different experience with your cancer because you were stage 2, and people tend to downplay the seriousness of it.
Sara: There’s a difference between the people who have zero knowledge about breast cancer and people who have either experienced it or are close to someone who had it. Even before I had it, I was informed because my mom had early-stage breast cancer. So it boggled my mind that so many of my friends didn’t know that cancer is staged, and I had to explain to them what my stage was and what that meant. For most people, until you’re actually part of this world and you learn the language, you assume cancer is cancer, and it’s all bad. Everyone knows someone who died of cancer, so when I told some of my friends, they immediately thought I was telling them I was dying.
Anya: Right, and then you’re put in the position where you have to comfort them.
Sara: Yes. I had to console them and reassure them that my cancer was treatable and I had a good prognosis. So there was that extreme, of friends who were completely ignorant of cancer staging and immediately assumed I was a goner. But other people, who had knowledge of breast cancer staging, like doctors, nurses, other women sitting beside me at chemo, and even my family members, would immediately ask me the stage. And when I said “two” they would nod and say, “Well, this is your bad year,” with this sort of patronizing implication that I would have one bad year of chemo and surgeries, but then I’d be done and back to normal. That attitude is dismissive of the fear and grief that goes along with this. I felt pressured to pretend I was not as scared as I was. It’s miserable to be bald and sick and weak and hear people cheering, “You’ll get through this! You’ll be on the other side of this before you know it!” But ultimately, when people say that, they’re saying what they want to hear – something that will make them feel better.
Anya: Right. They want to believe they can control their destiny. I can’t tell you how many people have come up to me and told me what I should eat or not eat. I had a doctor say to me, “The most important thing for treating cancer is positive thinking.” In our culture we have such a need to always feel in control that we create these narratives that are not true to the experience. It’s not fair to people who are sick because when they don’t fit into that narrative they don’t have a place. They don’t have a way to conceptualize themselves. So I wonder if there’s any sort of language that you associate with cancer that you like or don’t like?
Sara: One thing I was very quick to point out to people after my bilateral mastectomy was that I was not “in remission.” I wanted to use the terminology the surgeon used: “No evidence of malignancy remains.” So I use the phrase “cancer free” to describe myself. People who are quick to label me as being “in remission,” don’t understand why I don’t like that label. But that word suggests that my cancer will come back–that I’m just in this lull between cancers. Who knows? Maybe it will. But there’s also the chance that it won’t. Even if it does come back, I don’t want to think of this time in my life as being a ticking time bomb, just waiting for cancer to explode in me again.
Anya: I had a totally opposite response to the word “remission.” I always loved that word because it implied that there’s not only one remission. If cancer comes back, you can go back into remission, so I always thought of it as a very hopeful word. The language that I don’t like having to do with cancer is all the language about fighting and cancer being a war. There’s no other disease I can think of that is freighted with that kind of language. Cancer has this special battle terminology associated with it and I reject it because it assumes that first of all, it’s a fair fight which it isn’t. But also, if you’re a winner in your fight with breast cancer, what does that say about the people who die from breast cancer? The language implies that they’re losers. I find that so offensive. I know so many people who have died of cancer, and they didn’t do anything “not as well” as people who survived.
Sara: Exactly. The rhetoric that surrounds cancer is in place to make the people who take care of cancer patients feel better about the situation. I don’t know that it actually helps people who have cancer. When I was first diagnosed, I didn’t feel strong or brave. It was not helpful to call me a warrior or a soldier. Think about soldiers going into battle. They volunteer for that. I never raised my hand and said, “I’ll do this! Let me try to fight this horrible thing!”
Anya: Right! Plus, it’s yourself. Cancer is your own cells. I don’t want to think of myself as constantly in a state of fighting my own body. I live with this disease. There are cancer cells in my body. We live in equanimity as much as we can. I don’t want to live my life in that panic state that the word “battle” implies.
Sara: When I was going through treatment, so many people wanted to put those words on me. Even the nurses in the chemo ward would tell me and the other patients what strong fighters we were. I don’t know if they were saying that to bolster our self-esteem or if they just said it to soothe themselves.
Anya: But being a “strong fighter” doesn’t make a difference. You can have the best attitude in the world and if your cancer is going to metastasize or if you have a certain mutation it doesn’t matter if you’re a “strong fighter.” I had friends who were strong fighters who died. And I don’t think of myself as a particularly strong fighter, but I’m still alive.
ABOUT THE AUTHORS
Sara Hughes earned a PhD in English from Georgia State University in 2014. Her poems have been nominated for the Pushcart Prize, The 2015 Best of the Net Anthology, and the 2015 Independent Best American Poetry Award. She has published in Rattle, Reed, Rosebud, TAB, Atlanta Review, Emrys, and Atticus Review, among others. Sara has also received two writing fellowships from I-Park Foundation and one from The Hambidge Center for Creative Arts and Sciences. She teaches literature and writing at Middle Georgia State University in Macon, Georgia.
Anya Krugovoy Silver is a poet living in Macon, Georgia. She is the author of three books of poetry, The Ninety-Third Name of God (2010), I Watched You Disappear (2014), and From Nothing (forthcoming in September 2016), all published by the Louisiana State University Press. Her work has been published in many literary magazines, including Image, The Harvard Review, The Georgia Review, Five Points, Crazyhorse, New Ohio Review, Witness, The Christian Century, Poet Lore, Prairie Schooner, Southern Poetry Review, Shenandoah, and many others. Her work will be included in Best American Poetry 2016. Her poems have been featured on Garrison Keillor’s “The Writer’s Almanac,” in Ted Kooser’s syndicated column, “American Life in Poetry,” as an Academy of American Poets’ poem of the day, and on Poetry Daily. She was named Georgia Author of the Year/Poetry for 2015. She currently teaches in the English Department at Mercer University. She shares her life with her husband, son, and cockapoo. Since 2004, she has been living and thriving with inflammatory breast cancer.