“Why do people who have cancer seem so happy?” my 14-year-old daughter asked me the other day. I was surprised by her question—cancer usually conjures up fears of sickness, suffering and death. “Maybe because they embrace every day, knowing there could be a different outcome?” I stammered in response. But I kept mulling over her question as we drove home. Three years post-treatment, I’m still sorting out my complicated feelings about cancer.
Every time I look at myself, I am reminded of what it took from me. My treatment for stage 2, triple positive breast cancer lasted more than 18 months and included the surgical removal of my breast. Despite being on the other side of treatment (which I am grateful for), I feel the need to transform my experience into something beautiful, powerful and feminine. I don’t want breast reconstruction, but I am also not completely comfortable living in the world with one breast. It is difficult to describe the emotions that follow a cancer diagnosis, the journey through treatment and what happens if you are one of the fortunate who enter into remission.
On the day of my diagnosis, I only felt numb. When I called the doctor for the results, I realized I’d been holding my breath as the phone rang. “Doctor’s office,” the receptionist said in a voice that sang like a morning dove. I remember thinking How can she sound so sweet and happy, when what I might hear could radically change my life? It seemed like forever until I heard my doctor’s voice on the other end, and I could hardly concentrate on what she was saying. Please don’t let it be cancer, please don’t let it be cancer, oh God what if it’s cancer? I was 44 years old, with three children, a husband; I had a job I loved and was going to school full-time—I didn’t have time for cancer!
She asked me if I was driving, because she wanted to talk to me about something important. Lost in my thoughts, overwhelmed by the insanity of what was happening, I remember rolling down the window and feeling the air on my face, thinking that I have to get it together or the kids will know something is wrong.
The days and weeks that followed were filled with doctor’s appointments, MRIs, CT scans, blood tests and other investigations to make sure my organs were healthy enough to withstand the effects of chemotherapy. I also got tattooed to mark the areas where I’d get radiation. I was exhausted and I hadn’t even started the hard part yet.
Over the next 18 months, I had two surgeries, 25 rounds of radiation and then took Herceptin. I did everything I could to get rid of it, knowing that if I didn’t, it would continue its residence and take over, which is why having a mastectomy seemed like best course of action. What surprised me when I met with the surgeon, however, was the assumption that I’d want to have reconstructive surgery following the removal of my breast—I was immediately referred to a plastic surgeon. I can appreciate that some women cannot imagine having one breast, but I was tired—mentally, emotionally and physically. The last thing I wanted was another surgery.
After months of treatment, when there were no traces of cancer left, it was time to celebrate, get my hair back, grow eyebrows, eyelashes, shave my legs. It was time to move on from looking like a “cancer patient.” I should have been happy, right? But I wasn’t. Even now, when I look at myself, all I see is the scar where my breast used to be; it’s my daily reminder of what I went through. My scar is ugly. I have divots where the thinness of my chest wall shows my ribs and there is excess skin under my arm, which some women call “dog ears.” I feel unattractive, and I’m angry that the medications I take for breast cancer cause my joints to ache constantly and have contributed to weight gain. My body is not what it was, and I mourn the losses (and the gains!).
I wish I could say that I live my life without worry, but honestly, whenever I have any sort of discomfort, I automatically think the cancer has come back. I’m haunted by the idea that it is only a matter of time before it returns, and I’m self-conscious whenever I wear clothes that reveal my disfigured body.
As a registered nurse, I’ve cared for many people who were adversely affected by their body image. The ironic part is that I know from my education and nursing practice, the consequences of not being happy with your body can lead to anxiety, fear, depression, social isolation and problems with sexual intimacy, but when I started to feel this way myself I wasn’t sure where to turn. I am not the type of person who wallows in despair, which is why I started searching for alternative options. I wasn’t sure what I was looking for, but I knew there had to be more options than either reconstruction or nothing. I wanted to find something that would hide the scars and allow me to feel beautiful when I looked at myself.
Then I came across Personal Ink (P.ink), a non-profit organization dedicated to creating mastectomy tattoos for scar coverage. Every year, Personal Ink holds an ‘ink-a-thon, where artists come together with women selected to receive a mastectomy tattoo. Before I committed to the permanence of a tattoo, however, I wanted to learn why women wanted to cover their scars with tattoos and how they felt afterward.
Unfortunately, there weren’t many places to find this information, so I decided I’d look for the answers myself. For my PhD, I am researching what it’s like to be tattooed post-mastectomy by interviewing women who had chosen this alternative to breast reconstruction. Through many conversations, I am learning about the power that mastectomy tattoos have in transforming experiences of breast cancer.
Overwhelmingly, the women I’ve interviewed express how unhappy they felt when they’d look at their body after having one or both breasts removed. Similar to my own experiences, they find the scar is a constant reminder of what was lost in their battle and how they didn’t want to feel sorrow when they looked at themselves. Women tell me how the tattoo transforms their self-image of feeling ugly and damaged to being empowered and beautiful. Many women say they smile when they look at themselves and love to show off their tattoo because they consider it a work of art. It is clear that these works of art are allowing women to heal in the deep places that cancer crept.
There is still much to learn about mastectomy tattoos. What techniques are considered best practice for tattooing over both radiated and scar tissue? How does a woman go about finding a tattoo artist who is knowledgeable about these practices? What do we know about the inks that are used? Does the relationship with the artist contribute to the woman’s journey toward healing after breast cancer? If alternative options such as tattooing is providing women with a renewed sense of self following the surgical removal of their breasts, then women should have access to this knowledge. My motives to create awareness about alternative options for women to consider post-mastectomy are strengthened by the women who are challenging the status quo for what a woman “should look like.”
This opportunity to learn how mastectomy tattoos are creating joy after cancer has made me confront my own fears that the cancer may come back. Rather than live with this worry, I’ve decided to have my other breast removed prophylactically. I will live “flat” (a concept created by women who have had both breasts removed without reconstruction), but I will commemorate this surgery with a chest tattoo. I can’t wait for the day when I get to look at myself in the mirror and smile.
Victoria Reid-de Jong is a professor in the Trent Fleming School of Nursing at Trent University, who is working on a PhD in nursing from the University of Victoria.