Christina's story: how to reshape your body image after cancer
Updated: May 1, 2019
Being diagnosed with cancer sucks. According to desmoid cancer survivor Christina, the Adolescent and Young Adult (AYA) Cancer community shares a unique set of challenges. Today, the inspiring 28 years-old shares her experience of meeting other young cancer thrivers and the secrets of how to love your body after cancer.
Cancer wasn't part of my plan
Christina opens her story with a confession, "I'm not a spontaneous person".
"A planner by nature, I color-code my commitments in my paper planner, which is also cross-referenced in my Google Calendar. As an elementary school teacher, my units of instruction are designed weeks ahead of time. Even when I first donated blood back in high school, I was not surprised to learn that my blood type was A positive. I am, after all, type-A down to my blood!"
Cancer was not part of my plan. I was diagnosed at the age of 28 with Desmoid-type fibromatosis, a rare, intermediate-grade soft tissue sarcoma.
"In plain English, I have a statistically 1-in-a-million grapefruit-sized tumor attached to my clavicle. In the past year, I’ve tried two types of oral chemo and recently transitioned to infusions of monthly Doxil."
Since my diagnosis and change in treatment plan, I’ve learned that certain things can only be accomplished with a healthy amount of spontaneity.
"If I’m feeling good on a particular day, that’s the day to take an unplanned walk downtown to get ice cream. If I’m feeling tired, then anything I planned needs to be put aside in favor of resting."
CancerCon: what it's like to meet other young cancer thrivers
Today, Christina admits that when an opportunity seems like a good fit, she takes the leap. She recently received a scholarship to attend CancerCon - a four-day event that brings together survivors, caregivers, health advocates, and support staff. The event is hosted by Stupid Cancer, an organisation dedicated to support teens and young adults post cancer diagnosis.
As desmoid tumors are so rare, I have only ever met one patient within 10 years of my age. I was eager to connect with other patients who would understand the challenges of living as a young adult with a “normal” that no one else around me could comprehend.
"It’s hard to describe the environment of CancerCon. Imagine being in a room, with patients, caregivers, non-profit reps, and professionals, all aged 13-39. Your “normal,” which is straight-up bonkers to everyone at home, is status quo here. There’s no need to explain yourself, no condescending questions, only compassionate listening and cancer-specific joking.
Now imagine that people are willing to strike up a conversation out of the blue. All participants wore wearing colored bands to signify their role on the weekend. Patients and survivors were both wearing red, so it wasn’t uncommon to start a conversation with “Hey, what’s your name? What’s your story?”
What if you're attending an event for the first time?
Christina admits that she was fairly nervous to show up without knowing anyone, but that she quickly learned that you couldn’t turn a corner at CancerCon without a friendly face and someone introducing themselves.
"If you are a first-timer considering CancerCon 2020 and are nervous to go on your own, please know that people will be there to welcome you, embrace you, and celebrate the rockstar that you are."
One tip for first timers: try to get in on some of the social activities early to find a group to spend the weekend with.
"I lucked out big time on the first night by finding a great group of friends at Thursday’s Trivia Event.
We not only shared a lot of laughs, but ended up taking first place at Trivia - a personal victory that I had not-so-secretly hoped for! The breakout sessions were just as worthwhile as the social time. Throughout the weekend, I learned about how to incorporate creative writing, nature, and artistic expression into healing, how to map survivorship, and navigating the challenge of body image post-diagnosis."
Christina's 5 takeaways on Reshaping Body Image
Christina admits that of all the workshops, she was most looking forward to the Reshaping Body Image breakout session.
I have a very visible tumor, so much so that it can change the way a top or dress fits, an unknowing stranger can comment on how I look oddly swollen, or people straight-up stare.
"Knowing that invisible and visible cancers carry with them their own stigma, and the room was a mix of patients and survivors, we got some great tips from Sage Bolte, a licensed clinical worker and sex therapist."
Here are the top 5 tips that Christina plans on incorporating into her life:
1. Change the language that you use when talking to yourself.
Instead of “my body betrayed me,” (something many of us have felt!), try “cancer hurt my body.” This takes time. Be patient with yourself.
2. Think about what in your body you like and can accept.
Even if it is just your finger! See if you can find something that hasn’t changed in your body, like the strength in your hands.
3. Practice the conversations about the thing you’re uncomfortable with.
If someone comments that my tumor looks bigger, or smaller, I can practice saying:
Thank you! I’m busy kicking butt in treatment, so I let the radiologists who look at my scans worry about that.
4. Part of body image is also what you put on your body.
There’s nothing wrong with pursuing options that make you feel better, be it a great dress, an awesome blazer, or a stellar pair of shoes. If there is a scar in particular that you are struggling with, some patients find tattoos to be a beautiful, healing reclaiming of their body.
5. See if you can reclaim some mindfulness or meditation in your life.
I struggle with this in particular. I’m a registered yoga teacher and teach mindfulness to my students, but when I’m challenged with sitting and being in my body, silently, it’s scary and very uncomfortable. Another participant suggested using guided meditations. While that was not a huge part of my practice before, she reminded me that everything in my life has changed, so I don’t have to worry about returning to that same meditation practice I had before.
The gift of a community
The biggest gift I received was a sense of community. There are so many struggles unique to the AYA cancer community. I assumed I would need to navigate these challenges alone. I couldn’t be happier to be wrong!
"I felt more myself in the few days at CancerCon than I have since my diagnosis. I listened to people verbalize some of my deepest fears. I got a picture of survivorship and what that can look like. I talked to vendors who are running incredible programs to support patients and survivors. I saw the resilience of folks with metastatic and chronic diagnosis, similar to mine, and knew that I could find that same strength. Even though those four days flew by, I feel so grateful to have found people who are still supporting me from miles away. I got text messages on the day of my infusion saying “you got this!” I received words of advice when dealing with uncomfortable side effects a few days after returning home."
4 words: your feelings are valid
Hands down the best kind of support I found is when someone assured me, despite all my fears, that my feelings were totally valid. True support to me is holding space for someone to be their authentic, vulnerable self and assuring them you aren’t going anywhere.
How can we best support young adults with cancer?
Sitting with someone in their discomfort - listening to it, validating it, and sharing their pain - is uncomfortable, for sure. If we’re looking to build communities of support, we’ve got to be the brave ones. We have to show others how it’s done. We have to show up, fear and discomfort and all. We’ve got to be clear about what we need, what’s most helpful to us. We have to be willing to sit in discomfort - whether it's ours or someone else’s. It’s not easy. But I truly believe that if we all took the time to do that, this cancer thing would be filled with a lot more grace.
Find your tribe
At the closing session, Christina was asked to write a postcard that will be mailed back to her at a later date. On her card, she wrote:
"You are not alone. You never were.” That is my hope for you, and for all cancer patients. May you find the people that remind you that you are not alone.
Thank you Christina for sharing your experience and insights as a young cancer thriver and reminding us of the power of a community. We look forward to seeing you all in the Girls Rocking Cancer Community on Facebook or Instagram.
Christina and Mel