Everyone experiences critical illness differently. Age, job, family life, gender; prognosis and treatment are all factors that create a unique story for each unique patient. But being unique can also mean feeling lonely, isolated, and misunderstood.
In December 2012 at 38 years old, I was diagnosed with Triple Negative Breast Cancer. BAMM!!! Just like that, I was changed. It affected how I relate to others and how I see myself in the world. There were no moms in my mommy group who could offer me understanding. My Husband, although amazingly supportive, had his own fears to manage not to mention his hands full with our 18 month old son. I had a large group of friends and family who rallied behind me, many people making themselves available for everything and I mean EVERYTHING (my friend arranged to have my toilet replaced midway through chemo). And still, I felt alone. How could they ever really understand how I feel? I went through all the expected phases of shock and denial but found myself most surprised by how alone I felt and how angry that made me, like a teenager screaming before she slams her bedroom door “NO ONE UNDERSTANDS ME!!!” LOL!
After the initial shock wore off, a close friend asked me if I had heard of Rethink Breast Cancer and that maybe this was something I could look into. Within hours I had Googled and emailed and had my first interaction with someone who wasn’t afraid to ask “How are you going to do this?” She wasn’t all positive silver linings, with rainbow striped unicorns. She showed me true brave empathy. My diagnosis story didn’t give me much time to plan or think anything through and for this I am grateful in hindsight. But it also meant that in the early months of 2013, I was scrambling for anything that could help me feel normal. I needed to feel, as any woman does, sameness with my peers. I needed to find my community, create a peer group, and feel comradely support. Rethink Breast Cancer did this for me and continues to do so.
Rethink Breast Cancer’s https://rethinkbreastcancer.com/ mission is to empower young people worldwide who are concerned about and affected by breast cancer. Rethink is the first ever Canadian charity to focus on the 40s and under crowd. With education, resources, advocacy, community engagement and fundraising, Rethink responds to the unique needs of young women going through a breast cancer diagnosis.
I’m not an expert about all things breast cancer but I know my experience. One of the most memorable conversations (arguments really) I had with my Medical Oncologist was one where he asked me what was pushing me so hard to rush to the end of treatment. I was infuriated!!!! “MY LIFE” I screamed. I told him that if I could finish treatments even a few hours sooner I would do it so I could be a few hours closer to getting MY life back. He calmly told me that my life where I left it was gone. That I left pre cancer Heidi at diagnosis and she no longer existed, and that this new Heidi is stronger and braver than that other version of me had ever thought possible. That if I go searching for pre cancer Heidi, I won’t find her. And that the sooner I accepted this, the sooner I could begin to be happy. HARSH!!!! I really liked pre cancer Heidi!!!! I went home and wept, mourned her. As much as I struggled to admit it, I could see that my doctor was right.
Who am I? Who is post cancer Heidi? What is my “new normal”?
I explain cancer like this. When you are diagnosed, it’s like you are put on a train. Your friends and family are running beside the train throwing you words of encouragement and all the help they can from outside the train. But as treatment plods along, you realize that you are getting further and further away from your life. You can see your loved ones in the distance and all you can do is hope that they will wait for you to come find them when you are finally let off the train. But you aren’t alone in the car. Once you slow down and look around, you see that there are all these other wonderful women with you, with similar fears and challenges. Women that understand the language you have learned while being on the train. Women who will laugh at inappropriate jokes that are only funny to the train crowd. Women who look like you and smile at you with knowing eyes. Women who help each other even when the train has let them off, by showing you a path back into the non cancer world. No better support can be found than from those who have been on the cancer train.
In the Ottawa area there is a group of us that get together the last Sunday of every month. We call ourselves OMG, Ottawa Monthly Gathering. Rethink Breast Cancer kindly allows us to promote our planned get togethers through their social media outlets. We do all kinds of different things together, sometimes educational, sometimes not, but always Inspiring! The friends I’ve made through Rethink Breast Cancer have given me a place where I fit in without needing to define terms. With these women I am welcomed into an environment where I feel safe enough to be vulnerable. A group where it’s ok, that I’m not yet ok. The comfort I feel in the presence of these women has given me the confidence to be brave and look to the future. I believe that because of this community I have let myself start to find a rhythm, to find my place in the “new normal” and to accept that wherever I am on this road to recovery is exactly where I should be. The fact that I can talk about cancer openly with these friends has allowed me to find Heidi. My life will never be the same as it was before and that’s ok because I have these women to help me find my way.
If you are a young woman in any stage of breast cancer diagnosis and treatment, and would like to join a Rethink Breast Cancer community for young women on Facebook and come out to an OMG get together, please leave a comment below or email firstname.lastname@example.org and we will connect you with Heidi.
And if you would like to learn more about Heidi's journey, please follow her Healing Heidi Facebook page: https://www.facebook.com/HealingHeidi
Article written by Heidi Bauer, mom, wife, breast cancer thriver, and model!
May 18, 2017