Mojo and the Mess

No one teaches you how to be a patient.

You just get handed a diagnosis and suddenly you’re expected to understand a system you’ve never been part of. New words. New rules. New decisions that don’t feel small, even when they’re presented like they are.

I didn’t walk into this knowing anything.

I’m 27, stage four, and somewhere along the way I had to figure out how to survive more than just the cancer itself. I had to learn how to sit in waiting rooms without letting my mind spiral. How to ask questions when I didn’t even know what I was supposed to be asking. How to hear information that changes everything and still nod like I understood it the first time.

I had to learn how to advocate for myself.

That part doesn’t come naturally when you’re scared. You want to trust the people in front of you. You want to believe every plan is the right one. But I learned quickly that you can’t just sit back and hope everything lines up perfectly. You have to speak up when something feels off. You have to say, “Can you explain that again?” even when you feel annoying. You have to push sometimes, even when you’re exhausted.

No one hands you a guide for that.

And then there’s the part no one really prepares you for at all.

The financial side. The insurance calls. The approvals that don’t come through when they’re supposed to. The feeling of having to prove, over and over again, that you need the treatment your doctor already said you need.

I had to learn how to fight for that too.

Not just once, but constantly.

Appeals. Phone calls. Being transferred from one person to the next. Sitting there trying to stay calm while explaining something that feels way too big to be reduced to a policy number. There have been moments where it felt like I was begging someone on the other end of the line to let me have access to care.

And the hardest part is, that doesn’t just go away once you’ve been in this for a while.

Even now, years into this, I’m still dealing with it. Still following up. Still pushing. Still trying to make sure the treatments I need are actually covered.

It’s exhausting in a way that’s hard to explain unless you’ve been in it.

Because you’re not just dealing with being sick. You’re also dealing with a system that doesn’t always move with the urgency your life feels like it’s moving at.

I had to learn side effects the hard way too. Not from pamphlets or quick explanations, but from living them. From realizing that what sounds manageable on paper can feel completely different in your body. From understanding that two people can go through the same treatment and have completely different experiences.

That was a big one for me.

There isn’t one version of this. There isn’t one way to feel or react or recover. And once I stopped comparing my experience to everyone else’s, things made a little more sense.

I also had to learn how to exist outside of appointments.

Because your life can start to feel like it only happens in between them. Scan to scan. Treatment to treatment. Waiting for results. Waiting for the next step. It’s easy to lose yourself in that rhythm.

I didn’t want to disappear into it.

So I started figuring out how to hold onto pieces of myself in the middle of all of this. Small things. Normal things. Things that remind me I’m still here, even on the days it doesn’t feel like it.

And maybe the hardest part to learn was this.

You don’t have to do this perfectly.

You don’t have to be the “good patient” all the time. The one who handles everything gracefully, who never questions anything, who always stays positive.

Some days I ask all the questions. Some days I don’t have the energy to ask any.

Some days I feel strong in this. Other days I feel completely overwhelmed by it.

Both are real.

Both are allowed.

I didn’t learn how to be a patient overnight. I’m still learning. Still figuring it out as I go. Still adjusting to things I never asked to understand in the first place.

But if there’s one thing I know now, it’s this.

You don’t need to have it all figured out to get through it.

You just learn a little more each time you’re thrown into something new.

And somehow, that becomes enough to keep going.

If you’re in this too, in any version of it, I’m really glad you’re here.

Mojo & The Mess exists because I had to figure so much of this out on my own. The system, the side effects, the emotional parts no one really prepares you for. Now I share it so maybe someone else doesn’t feel quite as lost in it.

If you want more of these, you can subscribe so new posts go straight to you.

You can also check out the Resources tab for things that might actually help, or Keep Mojo & The Mess Going if you want to support what I’m building here.

Thank you for being here. It means more than you probably realize.