Cancer Muggles

If you’ve never lived with Stage IV Metastatic Breast Cancer (MBC), congratulations. Really. I hope you never earn membership in this club, but that also means you’re probably an MBC muggle (just a little more specific than a general cancer muggle).

Now before you get offended, let me explain. The term “muggle,” borrowed from Harry Potter, simply means someone outside the magical world. They aren’t bad people. They’re just, uninitiated. They don’t speak the language. They don’t recognize the customs. They don’t know the rules because no one ever handed them the map.

Cancer muggles (and particularly MBC muggles) are much the same.

They’re the neighbors who genuinely care, but don’t understand that a line of treatment ending isn’t a good thing. The coworkers who send flowers when chemo makes you so sensitive to smells. The cousins who text every few months. The stranger in the grocery store who notices your bald head and tells you their aunt “beat cancer.” The post office worker who suggests you purchase the breast cancer stamps. The receptionist who congratulates you on getting your port out when blood clots in your heart means you need to get the cause out of your body ASAP.

They’re good people, but they don’t know what they don’t know and sometimes that really really hurts when you are at your most raw. MBC has its own language: stable, progression, lines of treatment, NED/NEAD, scanxiety, progression, tumor makers, ctDNA, infusions, port flushes, among so many others.

The words become so common that you forget they’re foreign to everyone else. You casually mention you’re starting a new chemotherapy. A cancer muggle smiles.

“Oh! Hopefully this one knocks it out.”

And just like that, two people have had completely different conversations. They heard “cure.” You heard “buy more time.”

Cancer muggles think ringing the bell means the story is over. Those of us with MBC know there is no bell (and we know from so many who have rang the bell that it often, too often, doesn’t mean their experience with cancer is over either), there is only another appointment, another PET scan, another infusion chair, another pill bottle or IV therapy, another chance to stay stable for a little while longer until we run out of next steps.

It’s difficult to explain to someone that stability becomes your favorite word, not remission, not cure, stable. Imagine celebrating because nothing got worse, that the terminal cancer in your body is just still there, smoldering. Imagine throwing a party because your cancer had the decency to remain exactly where it was.

That’s living with MBC: trying to remain hopeful while the Sword of Damocles wobbles precariously overhead.

Cancer muggles don’t get that, don’t live that, don’t carry that 24/7/365. How could they?

Sometimes they offer stories:

• “My neighbor had breast cancer twenty years ago…”
• “My grandmother tried this supplement…”
• “I saw on Facebook…”
• “This influencer/cancer coach/(insert other nonsensical pretend “expert” who knows nothing about you personally) said …

I know what they’re trying to do, they’re reaching for hope because silence feels awkward. We humans hate empty space, we rush to fill it with words, any words. Even the wrong ones, especially the wrong ones, because somehow saying something feels better than admitting there is nothing to say.

Cancer muggles love battle language:

• You’re so strong.
• You’re a warrior.
• Keep fighting.
• Don’t give up.

Here’s the thing: I don’t wake up every morning choosing whether or not to “fight.” I wake up because I did. I swallow pills because they’re prescribed. I show up for treatment because the alternative isn’t appealing.

Some days courage looks remarkably ordinary. It’s brushing your teeth and getting dressed despite the fatigue. It’s answering emails after a vomiting. It’s participating in a webinar, providing a patient’s lived experience from the infusion chair. It’s scheduling your child’s next annual pediatric appointment while wondering whether you’ll be here to take your precious son next year.

That’s not a battle, that’s Tuesday.

The hardest part isn’t the awkward comments, it’s the assumptions. People assume if you look good, you must be getting better. If you’re smiling, you must be happy. If you’re working/volunteering/advocating, you must feel fine. If you went on vacation, cancer must be taking a break.

Cancer doesn’t take vacations, it just lets you borrow a few good days sometimes. I’ve learned to treasure those days without pretending they erase the bad ones. Cancer teaches us that joy and grief are remarkably comfortable roommates. Muggles usually haven’t had to learn it yet.

Here’s something else they don’t understand: the grief starts long before death. We grieve certainty. We grieve retirement plans. We grieve calendars we can no longer trust. We grieve future versions of ourselves that may never exist. We grieve future generations we will never get to meet and write letters to our children’s future partners.

Every stable scan carries relief and a reminder. Not today, but someday. Not for me today, but today for some else, maybe someone I love dearly. Living with MBC means carrying both truths at once. Cancer muggles often only see one, if that.

Every once in a while, though, a muggle becomes more fluent. Not because they wanted to, but because someone they love got sick.

Suddenly they stop saying, “Everything happens for a reason.” They start saying, “That sounds really hard.”

They stop saying, “So…where are you on your cancer journey now?” They start saying “How are you?”

They stop saying, “Let me know how I can help?” They start saying “Could I pick up some groceries for you when I go the store tomorrow?” And then drop them off or “What’s your favorite coffee?” and then bring you some or “When is your next infusion? Would it help if I brought you and sat with you?” And then actually follow through.

They stop trying to fix. They start listening and doing and following through and that’s when something beautiful happens. They don’t become cancer experts, they become safe people.

There’s a difference. The safest people in my life aren’t the ones with the best advice. They’re the ones who aren’t afraid of my reality. They don’t rush past my fear, they sit beside it. They don’t promise to show up and cancel. They don’t text “miss you” when they’ve chosen not to stay.

So, if you’re reading this and you’re a cancer muggle, welcome, I’m actually really glad you’re here. I don’t expect you to know everything and you don’t need perfect words. You don’t have to memorize medical terminology or understand every treatment. You certainly don’t have to solve a problem that oncology hasn’t solved.

Just be curious. Be willing to listen longer than you speak; ask questions instead of offering answers. Don’t confuse optimism with understanding and don’t mistake silence for failure. Sometimes the greatest gift you can give someone with MBC is your willingness to stay in the conversation after it becomes uncomfortable. Especially then.

Here’s the secret: every one of us was a cancer muggle once, until we weren’t. None of us asked to attend this school. None of us wanted to learn this language, but now that we’re here, we’ve discovered a something worth sharing.

The opposite of fear isn’t positivity. The opposite of fear is presence. You don’t have to know what to say. You just have to be willing to stay.

And if you can do that, you’re not much of a muggle anymore.