Living With MBC Without a Caregiver (Part 1)

When I was diagnosed with metastatic breast cancer at the age of 38 — almost two years ago now — I received the news while sitting in my oncologist’s office. I remember exactly where I was sitting, with my mother on one side and a friend on the other. Nowhere in the picture was a spouse or partner. You see, I became a widow at the age of 36 and that means I do not have a consistent, formal caregiver.

Living with MBC without a formal caregiver adds an extra layer of hard

Without a formal caregiver, I am the sole person in charge of managing all my care. There is not a consistent person already positioned to hear details, share in logistics, or stare at the calendar with me to remember: appointments or scans are near. There isn’t a person who knows how I am feeling in the middle of the night when I wake up and can’t fall back asleep. There isn’t a person who celebrates when I’ve finished yet another cycle of oral chemo and witnesses me throw away that empty bill bottle. It’s me. It’s just me. Living with MBC and managing all the details that come with that — almost another full-time job — falls on me. I bear that burden. Yes, there are wonderful friends and family members who graciously show up and check-in, but even that support is not the same as having the consistent presence of a partner dedicated to doing life together.

Living with MBC without a formal caregiver adds an extra layer of grief

There are times when the lack of a consistent formal caregiver adds more grief to the already grievous process of living with MBC. We all need a witness to our lives — someone to see us, hear us, and be with us through the ups and downs of life. Without this consistent person, I often feel extra grief on the journey. For me especially, as a widow, I am left grieving my husband’s absence, but also his absence on my journey today. I’ve learned it’s okay—healthy, actually—to name the grief and feel it fully. I don’t have to pretend it’s easy, and even though I am strong, I can still talk about what is extra hard, even unfair.

Living with MBC without a formal caregiver adds an extra layer of uncertainty

We do not know when we will take our last breath, but living with MBC without a caregiver adds even more uncertainty on top of the already uncertain picture. As a solo parent, my children — ages 14 and 19 — are acutely aware that without me, they will be parent-less. This reality is almost too much to bear at times. When making end-of-life arrangements, it is just me thinking about such things.  When talking to my kids about how MBC will affect us long term, it’s just me navigating those plans. When having really hard conversations about what happens if I pass away before my kids are old enough to live on their own, it’s just me answering their questions. There is so much unknown about living with MBC, but especially without a consistent caregiver, the uncertainty is intensified.

If you find yourself living with MBC without a caregiver, be sure to read part 2 of this series. The next installment will address tips and suggestions for those who are navigating life with MBC without a caregiver.

Editor’s Note: We are extremely saddened to say that on April 3, 2023, Amanda passed away. Amanda’s advocacy efforts and writing continue to reach many. She will be deeply missed.