Voices on Cancer is a Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Andrea Hutton is a breast cancer survivor and patient advocate. Her advocacy efforts focus on empowering and educating women to take care of their health. In her book Bald is Better With Earrings, she talks about her cancer experience and offers advice to women with breast cancer.
My advocacy story
When I heard the heart-stopping words, "It's cancer," I was a 41-year-old with 2 children and a busy life.
Being diagnosed with stage IV breast cancer changed my life and body forever. I was immediately thrown into a medical vortex. If I wasn't at a doctor's office, I was on hold with a doctor's office or online researching a doctor's office. I lost my hair, a breast, and more than a year of my life to tests, surgery, chemotherapy, and radiation therapy. Of course, it didn't end there. That pink elephant with the word "cancer" on it never leaves the room.
When I was diagnosed, I wanted to know everything. I wished I had a girlfriend's guide to breast cancer. While undergoing treatment, I started a blog to keep my friends and family up to date. I used the blog to try to explain what I was going through and share the tricks and tips I was discovering along the way.
I was motivated by the idea that sharing my cancer experience would help other women and their families. And so began the 2-year process of writing my book, Bald is Better with Earrings—A Survivor's Guide to Getting Through Breast Cancer (HarperCollins 2015).
Don’t shy away from support
I've been touched by how many people have reached out to me since my book was published. Recently, I heard from Tiffany, a woman whose doctor found a spot on an MRI a year after she finished her cancer treatment. Tiffany and her husband were getting ready to go on a trip when she received the news. She wasn't sure if she should tell him. She was devastated, but she didn’t want him to worry. She thought she was supposed to be brave and forgo the support she desperately needed — the support that studies show actually helps women do better while in treatment.
We are bombarded with the idea of the “perfect” breast cancer patient. In other words, a warrior who only eats organic food, wears just the right amount of makeup, proudly goes bald, founds a local charity, and of course, can walk or run for miles in fundraisers. She doesn't seem to need any help to keep her busy life in order. That’s why it often feels like a breast cancer diagnosis comes with the pressure to be perfect while fighting for your life. It’s easy to get brainwashed into thinking we have to constantly act like warriors.
Through my own cancer experience, I learned some hard lessons about who I am and what I need. I learned about my resilience and, in turn, my limits. I gave myself permission to have limits. I had to learn how not to push myself and how to ask for help. It's not just about you. People around you want to feel like they're doing something to help, so try to let them.
Women like Tiffany motivated me to become a patient advocate. I've been so inspired by the women I meet who fight for their lives every day. They and their daughters deserve a future without fear — a future where we no longer need so much awareness. We need to remind people that breast cancer is not a cause. It is a real disease that affects real women and men every single day—not just in October, when it’s National Breast Cancer Awareness month.
Writing about your cancer experience
In the beginning, I wrote a blog just to keep my friends and family from calling 8 times a day. But I also found writing about my experiences to be helpful for my own sanity. It gave me an outlet to share my emotions and information about my treatment. It even led me to a new career.
Here are a few tips on penning your thoughts after diagnosis.
Start a blog. Try setting up a blog to tell everyone how and what you’re doing. Make it your goal to write something every day. It doesn’t have to be a lot. It can even be a few lines or a photo. It’s easy to create your blog on websites such as CaringBridge and MyLifeLine, where you can make your writing public or private. Keeping a blog can connect you with friends and family. If you make a public one, you never know who may learn from you.
Write for yourself. If a blog isn’t your thing, try keeping a log or journal for yourself about your cancer experience. Include how you’re feeling every day and any questions you have about your health and treatment. Make notes about your energy level. These notes can be invaluable for tracking trends during chemotherapy. Or, they may just be a way for you to keep track, period. Chemobrain is real, I think. I can’t remember!
Seek out support. In addition to using writing as an outlet, find a group that you can talk to about what you're going through. Nobody understands it like someone who has been there. You can connect with a support group in person, online, or by phone. Remember not to take medical advice from anyone without credentials. Not even me!