What They Didn't Tell Me
Last updated: July 2023
In the 3 years my partner Steph and I have spent as residents in advanced breast cancer, we've received advice and sat through many teachings meant to help us. But, it often left us more confused than when we started.
One nurse explained to us how to care for a hip replacement when my partner was having a shoulder replacement. When we stopped her, she brushed it off, reassuring us that "they aren't that different". We've learned to parent through stage 4 breast cancer, where the best bathroom in the clinic is, and how to offset some of the worst of the side effects.
Often when we are deep in the cancer trenches, explaining cancer to our 6 year old, or dealing with insurance bureaucracy, I often find myself thinking "no one told me this." I don't know if a warning would have helped me prepare, but maybe it would have helped me feel not so alone. So here it is, a noncomplete list of all the things they did and didn't tell me, I would love to hear some of yours!
The mental toll of spending hours in the waiting room
They told me it would be hard, that it wouldn't be easy. I expected to lose sleep. To spend hours in waiting room chairs. I know my partner's date of birth better than I know my own, their allergies I could rattle off in my sleep.
They didn't tell me that after hours in the same waiting room I will begin to lose it a little bit. I often become obsessed with the idea of jumping up and announcing that the floor is lava just to see how many other patients, caregivers, and staff would participate.
The dark moments I would witness
They taught me how to remove an IV bolus line, how to monitor for infection, and what number to call if a fever became present.
They didn't tell me that I would witness some of my partner's darkest moments, brought on after a life altering surgery, amplified by the pain medications in their system, or that seeing their heart break would break my own.
How this diagnosis would change us
They taught me how to stand up to nurses, doctors, and technicians who in the busyness of their work day might forget to slow down and treat you with care. They taught me that someone's carelessness can send an entire day out of control. A cancer clinic is a stressful enough place without staff misgendering and fat shaming.
They didn't tell me that the therapy to help our family process this diagnosis would cost thousands of dollars. That going through this would change all of us permanently, in good ways and bad.
How to navigate marriage and intimacy
They told us this would change our marriage. That nothing would ever be the same. I remember the sad look on our oncologist's face when she said this to us over her glasses.
What they didn't tell us was how to make it through that change. We had to figure that out ourselves. We had to learn how to preserve intimacy through cancer treatments. How to love each other through the hard days.
They didn't tell us that "dates" would no longer mean getting dressed up, going to dinner, and then ice cream. That dates would now be chocolate mousse from a cooler shared over the infusion lines, and quick treats after appointments.
We would find ways to be grateful
In just 3 years we've discovered a love for travel, a family built out of members of the cancer and queer communities, and we've both been able to discover our voice along with a passion for advocating. None of this we would have had without cancer.
They told us that cancer was something that would one day take my partner, that it was incurable. While this felt like a death sentence, what they didn't and couldn't tell us, was that even with all the bad, scary, and intense moments we would find a gratefulness and things that we didn't have before.
Advanced breast cancer is an isolating and lonely disease.