The Things They Don't Tell You

Note: This article originally appeared in the October/November 2020 issue of Wildfire magazine.

There are so many things they don’t tell you when you’re diagnosed with breast cancer, especially when you’re diagnosed at a young age. They don’t tell you that you’ll be the youngest one in the waiting room for every appointment, the youngest one in the support group. That you’ll feel like people are looking at you, wondering why a healthy young person like you would be taking up a valuable time slot in the oncologist’s schedule. They don’t tell you that everyone you know will try to “fix you up” with a friend or relative of theirs who’s also had breast cancer and that all of these women will end up being your mother’s or grandmother’s age. They don’t tell you how many times you’ll hear that these other women just want to live to see their grandkids graduate, while you’re thinking, “I just want to live long enough to have kids.” 

They don’t tell you how to handle the times when someone suggests you try a miracle moondust remedy that’s healed 12 people already. Or how to respond to the conspiracy theorist who is sure the government has the cure for cancer but is keeping it a secret.

They don’t tell you about all the questions you’ll get from the family, friends, and coworkers who care about you. That person after person will want to know your prognosis and what treatments you’re considering. They don’t tell you that, because you were diagnosed so young and have no family history of breast cancer, none of your friends and family will have had any experience with breast cancer. That it will sometimes feel like you’re the one caring for them, educating them about your disease and putting on a brave face to protect their feelings. 

They don’t tell you what to do after a metastatic diagnosis when people are still trying to tell you that you’re going to “beat this.” They don’t tell you that the early-stage breast cancer community won’t want you in their support groups now because your diagnosis scares them. Or that you’ll be asked to share your story and then told to edit it to make it less sad.

They don’t tell you how hard even a simple question like, “How are you?” will be, that you’ll never know if the person asking really wants to know or if they’re just hoping you’ll say, “I’m fine,” and move on. They don’t tell you how hard small talk becomes when you don’t have a job or kids but instead have a terminal disease. They don’t tell you how alone you’ll feel.

They didn’t tell me to start a blog to communicate all my health updates to everyone at once, to respond to all the questions, and to share real life as a young woman living with cancer. But I did. You have to make your own way forward. 

I’ve now been writing about my cancer for nine years. My readers and I have walked through each step of my diagnosis and treatment this way. In 2011, we didn’t know what BRCA2 was, but after I found out I carried the mutation, I researched it, then wrote about it to educate them. I wrote about my decision to do the chemo I had been dead set against and the decision to remove my ovaries a few years later. When I got the news that my cancer had spread to my bones and I was now considered terminal, I processed my grief by writing about it.

These aren’t the kinds of things most people chat about over coffee and so many people keep their pain to themselves. But I’ve found that when I share these thoughts and feelings on my blog, people get a window into what I’m going through, both mentally and physically, and what other women with similar diagnoses may be facing. I may not fit in any support group, but I can equip the support system I already have with the knowledge they need to meet my needs and the needs of other breast cancer patients in their lives.

This has helped them, they tell me, but I think it’s helped me more. Of course, when I write about how I’ve come to each decision about my treatment, I get fewer questions to answer, fewer insensitive comments or suggestions. But it turns out that when I write I also feel free to say all the things I’m not able to say in person. It’s rare that it feels like the right time to tell someone in person exactly how I’m feeling about my diagnosis and prognosis. In person, it’s hard for me to gauge if someone really wants to know how I’m doing or, if I’m certain they do, how much time they actually have to hear me out. Because processing big things like cancer and death isn’t really a two-minute conversation. 

However, when I share these things through my writing, I can be as brief or as detailed as I want to be. I can mull things over and write my way into understanding how I really feel. I can say the things I might have said in person but didn’t think of until hours later. And then, whenever someone feels ready to know how I’m really doing, they can jump online and get an update. 

I get as much out of writing my blog as anyone gets out of reading it. When I write, I find wisdom I didn’t know I possessed. I find purpose as I advocate for those of us in the metastatic community or when my story encourages someone going through their own difficulty. I find deep affirmation when something I write resonates with another, because I know that person is acknowledging the deepest, truest part of me. I know my lifespan is limited and I won’t be able to have children who will live on as my legacy, but the deepest, truest part of me - my words - will be my legacy.

Photo credits: Celestial Sights Photography