By Carrie Brooks-Joiner, KAB member

When I was a kid, the only person I knew with a tattoo was my Great Uncle Harold. It was on his upper arm and its original sharpness and colour had long faded. I never knew what it represented, and I didn’t dare to ask him. I only ever knew it had something to do with the war and that my mother disapproved.  To me, it represented a combination of badass and what I could only assume was youthful regret.

At eighteen, my youngest daughter announced she was going to get a tattoo on her inner forearm. She didn’t need my approval, but I certainly let her know I did not approve. My concern about the permanence was to her the whole point of getting one.

Val and daughter's tattoos
Val and her daughter’s matching dragon tattoos
My daughter and I got matching tattoos for my 50th Birthday – a dragon and pink ribbon. I was diagnosed at age 44, joined the Knot A Breast Dragon Boat Team the next year. At that time, the team was just finding themselves. We broke the 3 minute mark for a race – that was an exciting race (we have come a long way since then). I guess you could say these were our first glory days of racing.
My personal life not so hot: our parents were getting up there; my Dad passed away the month before by 50th birthday. My daughter suggested we do something fun – get matching tattoos. I have never regretted getting the tattoo. I actually forget I have it most times.
P.S.: We made the tattoo artist make the dragon happy, not scary, so it is not exactly like the KAB dragon.

It seemed that overnight tattoo culture was everywhere. It was the subject of reality TV shows, produced a raft of tattoo artist stars, and provided fodder for Instagram. Several of my friends celebrated birthdays, vacations and milestones by getting “inked”. I didn’t get the allure, and the permanent inking of skin seemed slightly repulsive to me. I swore I would never get a tattoo, but cancer made a liar out of me.

It never occurred to me that tattoos would be used to map the boundaries of my radiation treatment zone. Four small green dots, inked clumsily by a radiation technician, were my initiation into tattoo culture. The dots, the size of freckles, remind me of the first points of an incomplete dot-to-dot game of my youth and the picture isn’t revealed until all the dots are joined by lines drawn in sequential order. But my dot tattoos were neither interesting, artistic nor meaningful in a positive way. They did, however, give me bragging rights and all of a sudden I had more tattoos than anyone I knew.  

Milka's ribbon tattoo on her shoulder
Milka’s ribbon tattoo
I had started to think about getting a tattoo well before my breast cancer diagnosis. I could never find anything meaningful enough to warrant the pain and the permanency of a tattoo. My life changed drastically after breast cancer and not just in a negative way. I became stronger, lost a lot of weight, joined Knot A Breast Dragon Boat Team, and started along the road to become fitter and healthier than I have ever been. There was a new me and I thought, OK, time for that tattoo to celebrate this new person. 
I was never really enamoured with the pink ribbon or the fact that it was a survivor symbol. I don’t feel like a survivor. It feels like it should be more of a thriver symbol. I didn’t just survive, I thrived and I knew I wanted to have a mark on my body to symbolize that, a visible mark on a very strong part of my body, my shoulder!
The foundation is the ribbon but the colour is not the traditional pink, nor is the shape, feel or flow. It’s a whimsical brush stroke, with a flowy form and movement that symbolizes for me that I have thrived and grown into someone who is healthy and strong. And it makes me smile every time I see it! It doesn’t make me think of cancer. It symbolizes for me that I have flourished into someone who is strong, powerful and a little bit artsy!

Now with the link between tattoos and cancer firmly in my mind, I began to notice that breast cancer has its own tattoo culture. As I moved through stages of treatment in search of the new normal, I became aware of how embedded tattoos are in the breast cancer community. Apart from the unwanted radiation tattoos that many of us do our best to ignore, there are also celebratory tattoos that are chosen deliberately and worn proudly, rallying tattoos that are badges of the battle and the fight, images that note the belonging of the breast cancer survivor “club”, and, sadly, memorial tattoos worn by friends and family.

A year after my mastectomy I became interested in the post-surgery tattoos: ones to hide mastectomy and reconstructions scars and others that create the illusion of a three-dimensional nipple on a reconstructed breast. It was the scar-hiding tattoos that initially fascinated me the most. The program (Personal Ink, a North American program that provides “tattoo inspiration” to breast cancer survivors) shares images of how artists use a scarred chest as a canvas for sweeping florals, exquisite birds, and complex graphics. They promote beautiful, empowering designs as a way for women to reclaim their bodies after breast cancer and not allow it to leave the “last mark”.

Ann's survivor and pink ribbon tattoo
Ann’s pink ribbon tattoo
I had the ‘pink ribbon’ done about 5 years after being diagnosed. I had already been part of Knot A Breast Dragon Boat Team for a couple of seasons. It was one way that I could state that I was a Breast Cancer Survivor. When I made the choice to have a tattoo, I asked a girlfriend to come with me to be my support. We went for a couple of glasses of wine after. I chose to put it on my ankle because it was in the open for anyone to see – yet subtle.

I had never seen a mastectomy scar until I viewed my own. As much as I admired the artistry of the elaborate tattoos, I didn’t have a need or desire to hide my mastectomy scar. With a length of 7 inches, it would take a large tattoo to hide it. I wasn’t interested in anything that substantial or that would show when I am dressed. 

With thoughts of hiding the scar out the window, I increasingly became intrigued by the idea of “owning” my scar and how a tattoo might enhance that concept. The scar is a long, thin imperfect line that starts at my sternum and ends under my armpit. I played with the idea of the line as a wire and imagined small birds on it (Leonard Cohen in my ears) or turning it into telephone wires with poles. A string? Not vertical enough for a kite. A tail? No rodents or creatures on this chest. Eventually, I got back to the idea of the scar as a former wound. I like sewing and imagined a needle and thread with large stitches across the scar just like the mending of a tear in clothing. Too cliché. A zipper? No, that was a scar cover and I’d decided against hiding it. I thought I had it with the idea of tattooed staples but in the end, decided that it was too Frankenstein. I was getting nowhere, and the months were passing by. After much research and reference checking, I had selected a tattoo artist, but I still didn’t know what I wanted in a tattoo.

Ann's dragonfly tattoo
Ann’s dragonfly tattoo
From KAB’s Website: It is said that a dragonfly represents the spirit of a team member no longer with us; they rest, ever so gently with glistening wings, on the shoulder of the paddlers to give them strength as they race down the course. They symbolize hope, grace and strength. Often, dragonflies will glide over the paddles as the team waits for the starting horn to blow. It brings a bittersweet smile to their faces, encouraging them to do their best.
A couple of years after my ‘Pink Ribbon’ tattoo, a teammate asked me to be her supporter when she got her first tattoo. While she was getting her dragonfly done, I made the decision to have a smaller version tattooed on my wrist. Now, understanding the meaning that the dragonfly has to Breast Cancer Survivors, it was an easy choice.

I went back to basics: the scar was not to be hidden; it was to be a (former) wound rather than turned into something else; it needed to be a personally meaningful message. One day it came to me: safety pins. Safety pins fix things. They reinforce. They add strength where there is weakness. Even though my cancer-laden breast is gone, and the scar is healed, there is a risk of recurrence. Safety pins. Perfect.

Carrie's 3 safety pins on her mastectomy scar
Carrie’s safety pins tattoo

In October 2018, I met with tattoo artist Anthony Jenkins, owner of The Intrepid Club in Waterdown (now in Dundas). Anthony is known for exquisite nipple re-creation tattoos and has done a lot of work on scars and with mastectomy clients. I took my idea to him and he immediately got it. Rather than put me on the many months waiting list as I had expected and was prepared for, he offered to do the tattoo in the following days. I said yes, made the appointment, and left wondering “what I have done?” When I returned, Anthony had designed the tattoo based on our discussion and it was perfect. The actual tattooing was not painful or uncomfortable (my scar area is quite numb) – it was closer to a prickly sensation like an electric razor, and it was all done within 45 minutes.

A year and a half later I still love the tattoo. It has given me many a smile in response to startled looks from medical staff when I’m disrobed for checkups and scans. It accomplished exactly what I’d hoped it would for me: a visual and emotional reminder of strength and reinforcement. I own this scar.

Photo of author

By Carrie Brooks-Joiner, KAB Member

We know what the “C” word means. Given the prevalence of cancer in so many forms, most people have at least a passing familiarity of the disease. Yet, until it demands our attention, cancer tends to stay in the background of our consciousness.

For members of the Knot A Breast Breast Cancer Survivor Dragon Boat team members, we have already faced the big “C”. For some of us, and others who have experienced cancer, it is not the big “C” that dominates our thoughts, but the big “R”; recurrence. My handy dictionary explains recurrence as the “fact of happening again”. Dr. Google goes on to explain that in a cancer context, recurrence is cancer that has recurred (come back or metastasized), usually after a period of time during which cancer could not be detected. Cancer may come back to the same place as the original (primary) tumour or in another place in the body. 

I was a cancer innocent. It never occurred to me that I would get breast cancer. There is very little cancer in my family and no breast cancer. I had none of the risk factors. I distinctly recall my mother explaining to me that it is cardiovascular disease that kills the women in my family. Perhaps she thought that somehow this awareness, and her reminders to pay attention to healthy living, would stave off that threat. Maybe it has, but there was cancer lurking behind it. 

To me, it was being blindsided by cancer, not the chemo, surgery or radiation that was hardest to recover from. I never saw it coming. It was like being hit in the head with a ball in the playground and you weren’t even part of the dodgeball game or really aware the game was going on. It stuns you and disorients you before you can make any sense of what happened. 

While I don’t accept that cancer is a “gift” or that it has made me a better person, I have learned to raise the bar on what is a health problem. I can brush off a nasty cold or the flare of a chronic injury as temporary minor annoyances; I know they won’t “kill” me. But I have to admit that there is the fleeting moment where I wonder whether the new cough or pain is a symptom of metastasis.

Recurrence rears its head at unexpected moments. At work, we joke about the hope of being retired at the conclusion of long-term projects, but that’s not where my thoughts go. When one of my daughters casually refers to getting married or having children “someday”, my silent thought is “Will I live that long?”.

As a breast cancer team, we talk about cancer frequently. There is tremendous value in sharing experiences and information about treatments, products, and services in a healthy and positive way. But other than the off-hand comment or joke, recurrence is not something we talk openly about. Perhaps it is reserved for more private, over coffee conversations or smaller car-pool chats. I suspect that it is a common fear among us but I don’t really know to what extent it fades or heightens over time or how it’s different for those at stage 0 versus stage 3.

I envy those who, post-treatment, can take a “no evidence of disease” or NED status, as “cure” and who can park cancer thoughts in the far back parking lot and move on. I am not able to do that. (Perhaps I am being naive that anyone ever really moves on.) My knowledge of my high risk of recurrence stays with me. A glimpse of my mastectomy scar as I get out of the shower, or a damn pink ribbon on my package of lettuce, are constant little reminders that register to my subconscious. While the return of cancer is on my mind, it doesn’t haunt me in a depressive way or negatively impacts my daily life. Like a song I can’t get out of my head, or a word I can’t quite remember, recurrence hovers just under the surface of my daily thoughts.

I know that my awareness of the risk of recurrence is a little bit of armour. Informed by a growing file of peer-reviewed journal articles and familiarity with Kaplan-Meier overall survival graphs, I am still frustrated by the lack of specificity. If, or when, cancer reoccurs, I imagine I will be angry, sad, and disoriented, but I won’t be blindsided. The return of cancer will be much easier for me to rationalize than the original diagnosis.

So what do I do with all this? What do fellow paddlers do with this? I have no good advice for anyone else with recurrence on the brain. It can be a deep dark hole that is hard to climb out of once you fall in. Or it can be a place that you never acknowledge exists. For me, the hovering presence of recurrence is a reminder to live a little faster and live a little more deliberately.

Author’s note: This blog was written prior to COVID-19, and published in 2020 while the world is in a pandemic. Measures that are currently in place to control the spread of the virus are negatively impacting KAB members’ treatments, appointments and healthy living routines. Even under these exceptional circumstances and new health concerns, thoughts of recurrence still linger. All the more reason to connect with others, have authentic conversations and find joy in every day.