The Flares

I’ve been dealing with cancer for ten years.
Metastatic cancer for a little over three.

I’m finally starting to understand what’s happening when my body reacts the way it does. And when I say body, I mean all of it — physical, mental, and emotional. You don’t get to separate those things when you’re living with cancer.

I can be fine. Everything can be good. I have my head on straight. I’m doing the things I’m “supposed” to be doing — walking, stretching, light strength work, trying not to stress, just being okay.

And then out of nowhere, it all goes to shit.

The flare-ups start, and they are brutal.

Complete mental shutdown. Emotional overload. Pain that is unreal. And all I want is to be left alone. Do I know when it’s coming? Nope. Can I plan for it? Nope. It just happens.

It’s taken me three years to even begin to understand this.

When you are first diagnosed with Stage IV your brain is stuck on one thing: Oh my God, I’m going to die.
Then come the labs, medications, infusions, scans, and radiation. Okay — we’re doing something. Good.

But after a while, you get really tired of being stuck with needles, scanned, zapped, and pumped full of meds. The side effects pile up. And when bloodwork looks “good,” tumor markers are stable, treatment seems to be working, and there’s no progression, everyone else backs off.

Here’s the part no one wants to talk about:
Just because they back off doesn’t mean everything is suddenly fine.

I’m still exhausted.
I’m still in pain.
I’m still so fatigued some days that I can’t get out of bed.

I don’t want to engage with people because most of what they say is going to piss me off. I don’t need “be strong,” “you’ve got this,” or “it’s only temporary” bullshit. None of that helps. There are no magic words.

And I am beyond tired of trying to make everyone else feel more comfortable with my cancer. I’m tired of explaining. I’m tired of consoling people. I’m just tired.

We Are Not the Same

Yes, aging comes with pain. Arthritis. Stiff joints. Less energy. Brain fog. Memory issues.

Now take all of that and add this:

Pain that feels like you’re being stabbed in your bones and organs. Tumors rubbing against things they shouldn’t be. A constant feeling like you’re wearing lead from head to toe. Trouble getting up, walking, sitting, lying down — not because you’re stiff, but because you don’t have the strength.

And no matter how much you sleep, rest, or try whatever magical thing someone swears will “give you energy,” you don’t recharge. You never feel rested. You never feel refreshed.

It completely sucks.

The Call That Broke Me

All of this is a setup for today — and yes, this is a bit of a bitch session.

When I hit a bad flare, I do what I always do: I try to make a plan. I messaged my oncologist’s office and explained exactly what was going on.

I got a call back from my favorite clinical nurse (heavy sarcasm here). She asked whether it might be the flu or something viral and suggested I get tested. Apparently, because my test results look “fine,” this couldn’t possibly be cancer-related. I was fuming and felt completely dismissed and unseen.

I had just seen my primary care doctor the week before. I don’t have the flu. I don’t have anything viral.

She kept calling it “soreness.”
I corrected her: No. It feels like I’m being stabbed in every tumor. If you know me, you know the exact tone that was said in!

The fatigue? Basically dismissed — because there’s “nothing they can do.”

Fine.

Side note: this is the same nurse who, during a previous appointment, muttered “me too” under her breath when I said I was tired of all of this. If you work in oncology and have lost your compassion, find another job.

So I Did What I Had To Do

After I calmed down, I asked myself what I actually needed to do. I went to my online support people — because they get it. I explained what was happening, and they reminded me of things I already had access to but had forgotten. They lifted me so I could get myself together.

That’s when I made my plan.

And honestly? This should be standard for every Stage IV patient.
But it isn’t.

Early-stage patients get support because there’s still hope of “getting back to normal.” Stage IV patients? We get very few fucks.

Setting Up Your Stage IV Support

Here’s the reality: no one is going to advocate for you except you. Which is ridiculous, because we are still people and deserve some quality of life.

This is what should be in place:

1. Once you have an oncologist, they handle the tests, scans, meds, radiation — all the cancer stuff.
2. Ask for a referral to a therapist and a social worker.
3. Ask for a referral to palliative care.
4. Make sure your primary care doctor is looped in, along with any other specialists.
5. If you need connection or encouragement, find a local group or an online one — whatever feels safest to you.

You are a human being. You deserve support. You deserve to feel safe.

Who Does What (Because It Matters)

Your oncologist focuses on cancer — bloodwork, tumor markers, scans, treatments. That’s it. Ask about anything outside of that and you’ll likely be told to talk to someone else.

A therapist is where you talk about how this is actually affecting you — mentally and emotionally. They help manage anxiety, depression, mood, and medications that allow you to think clearly enough to tolerate this longer.

A social worker helps with emotional support, navigating resources, financial assistance, family support, and coordinating care across teams.

Palliative care focuses on your physical, mental, emotional, social, and spiritual well-being. It is not end-of-life care. It’s about quality of life — pain, fatigue, symptoms — and thinking outside the box.

There’s overlap between social workers and palliative care professionals, but they don’t do the same things. Their focus and scope are different, and both are necessary.

One Last Thing

There are options.
They just don’t always tell you about them.

Sometimes they mention them right after saying “It’s progressed to Stage IV,” when your brain shuts down and you don’t hear another word.

I’m not in healthcare. I’m not giving advice. I’m sharing what I’ve lived and learned over the last decade.

If you have medical questions, talk to your care team.
If you’re feeling dismissed, exhausted, angry, or lost — you’re not wrong.

And you’re not alone.