Dear Breast Cancer Awareness Month,

Bringing awareness to different diseases seems to be a big part of the “community spirit” within the chronic illness and Disability communities. My social media is filled with awareness posts all the time as I follow people with all kinds of different illnesses, all of which have their own special months. September is Childhood Cancer Awareness month and October is Breast Cancer Awareness Month. Both of these are difficult for me, but October is hardest because breast cancer has been such a big part of my life lately. 

Bringing awareness is crucial. For funding and general decreasing of stigma and inclusivity etc. However, for someone who is already more than aware of the existence of these things, their awareness months are months full of triggers. I have a sibling who is a pediatric cancer survivor. They are many years out, and so September is pretty much the only month I start to think about that time in the past or possibility of recurrence or anything like that because it is all around me. My mother was diagnosed with breast cancer in 2020. That changed our lives forever and still impacts us today. That time period during her active treatment was highly traumatic for both of us, especially being in the middle of the pandemic. 

Since then, I have myself been diagnosed with dense breast tissue and have “extremely high risk” of developing breast cancer. The benign lump sitting on my chest needs checking often and it is a constant reminder of what might be to come. In my nightmares I think about the day I will be brave enough to explore the preventative mastectomy. Therefore, it is only natural that whenever I see the pink ribbon I feel sick to my stomach. Whenever my Instagram shows me an awareness post of a young woman demonstrating how to check for lumps it makes me cry. Because of my life with illness, I do use social media to connect with people in similar situations and to be inspired, in a way. When I am in a stable place, I am able to read people’s inspiring posts and be happy for the people running a marathon after chemo or having children or ringing the bell or whatever they post about. But when I am in a fragile place, or my lump is hurting, or my mom is sick or I’ve just had an appointment or even with no clear reason, one post with the ribbon can send me into a full-blown panic attack. 

Breast cancer is horrifyingly common. That is a fact. Checking for lumps can save your life. That is also a fact. Especially for young women who are not offered mammograms. We must be our own advocates. I am well aware of all that. The awareness campaigns are important and great. Rational Me knows that. Emotional Me is terrified of them. They make me think of my friends or family being in that statistic that is blared at us all month long. It makes me worry 100 times more about my own future and how I handle my cancer risk. 

Sometimes these months also angers me because people see those short awareness videos and think they know what breast cancer is. I know I can’t claim to know either because it was my mother’s experience, not mine, but from the sidelines I can say it is so much more than finding the lump and saving your life. It is something that scars you in so many ways, scars your family and friends and changes your life no matter how hard you try to stop it from doing that. It completely transformed my mother and transformed me as her daughter as well. People’s view of it as “the easy” or “good” cancer is difficult to swallow. If only they could see us. 

Lastly, during October the vast majority of the awareness is put on the “young person finding a little lump and having it all sorted out” storyline. There is almost nothing around about metastatic or stage 4 breast cancer even though that is what kills women every day. That is the stuff that even awareness campaigns are wary of touching because it is real and terrifying and much harder to stomach than the happy ending they try to portray. There are very effective drugs out there to treat Stage 1 breast cancer, this is true. Finding it at that stage is also a very important step, that is true too. But some people never find a lump. Everyone’s story is different. Metastatic breast cancer has much much fewer treatment options and yet it is often hidden away from the pink ribbon story during October. 

These months are important. I am grateful to those people who are in a place to be able to share their stories and raise awareness and talk about breasts and lumps and everything else. I am personally not there. October is really hard for me and my family and I spend a lot of it hiding away and this is why. 

But finally, check your breasts. Ask your doctor questions. Be a self-advocate always. 

Dear Fellow Patients,

I don’t know if I’m the only one, but I think A LOT about the last two years. The pandemic and everything that came with it changed my life forever. For many reasons.

Many nights I lie in bed and flash through defining moments of the pandemic. I think about my responses and my feelings at the time. I doubt myself; wonder if I was thinking the right things. I always come back to one specific moment. It is one of the biggest regrets I have.

I was sitting in the lobby of the oncology ward at the hospital. It was the height of pandemic panic and the chairs were strictly distanced and parted by red tape and angry red stickers on the floor. A young woman came and sat at the other end of the room. She got out her phone and called someone. And then she started crying and said “it’s cancer mom, it’s cancer.” Then her crying got my intense. I could hear her sobs and her words but she was many red stickers and tape away from me. I was locked in my seat, but I was feeling all her emotion. (I wasn’t just sitting on the oncology ward for no reason after all). I could feel my own eyes well up with tears as I was witness to this incredibly traumatic moment in this woman’s life.

Once she had hung up, she sat numbly for a little while, tears still coming down her face. Then she put her phone away, put on her backpack and walked away. After she was gone I went to the restroom and cried my eyes out. For her. And also for another reason. I was so incredibly angry at myself. That whole time I had sat frozen and terrified of the meaning behind those red stickers. Had it not been pandemic times, I want to tell myself I wouldn’t have hesitated to run over and give her a hug and ask her if she needed anything at all. I would have told her it was going to be okay even if it didn’t feel like it in that moment. But I didn’t do that. The rules were so strict at this point. We were all so scared of catching COVID. Especially on an oncology ward. I was afraid that I would then make her sick or her me. That maybe me violating social distancing would make her even more upset.

But two years later I still regret everything about that moment. I should’ve gone for it. I should have let her see I was crying with her. That she was not alone. Because in that moment she must have felt so so alone. I should’ve stepped over that tape and on all those stickers and moved the chair and been with her. Human to human. Allow her to cry on my shoulder instead of into nothing. Reassure her. Hold her and her terrible news to make it a little less heavy. But at that time, I didn’t. One might say that the fog of the pandemic was hanging over me so intensely that it actually prevented me from seeing what the right thing to do was. I regretted it immediately as she walked away and I still do.

I know how I would do it now, COVID or not. I vow to remember that young woman so that I can do the right thing next time. Isolation in times of crisis is one of the most painful things that someone can experience. Be with each other. Hold each other. Love each other. Family, friends, strangers. Everyone.

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