What I Thought Cancer Survivorship Would Feel Like vs. What It Actually Feels Like

Before I became a cancer survivor, I had a very different idea of what survivorship looked like.

I thought there was a finish line.

You finished chemo. You finished radiation. You healed from surgery. Your scans looked good.

Everyone celebrated.

And then you went back to your regularly scheduled life.

Cute.

As someone who has now been diagnosed with breast cancer twice, I can confidently say survivorship has looked very different from what I imagined.

Because apparently, “Congratulations! You’re done with treatment!” does not come with a factory reset.

Who knew?

I Thought Treatment Would End and Life Would Go Back to Normal

This was probably my biggest misconception.

Treatment ends.

Life resumes.

Except everyone else’s life seems to resume much faster than yours does.

During treatment, cancer is allowed to consume your life. People understand why you’re tired. They understand why you can’t attend something. They check on you. They ask about appointments. They offer help.

Then treatment ends and there’s this weird expectation that you’re back.

She’s done! She’s good!

Meanwhile, you’re standing there thinking:

Wait. WTF do I do now?

Because the person who entered cancer treatment isn’t necessarily the same person who came out of it.

I didn’t need to “get back to normal.”

I needed to figure out what normal looked like now.

I Thought My Body Would Bounce Back

Oh, sweet pre-cancer me.

I thought chemotherapy would end and my body would slowly return to its previous settings.

Instead, my body basically said:

Best I can do is fatigue, neuropathy, brain fog, weird nails, hair that has its own personality and absolutely unhinged hormones.

Deal?

One of the things people don’t always understand about cancer treatment is that side effects don’t necessarily pack their bags when treatment ends.

Cancer-related fatigue can linger. Neuropathy can linger. Cognitive changes can linger. Surgical changes are permanent. Hormonal treatments can bring their own ongoing side effects.

Your body went through something enormous.

Healing doesn’t operate according to the date of your last treatment.

I Thought I’d Stop Being Afraid of Cancer

Surely hearing good scan results would finally turn off that part of my brain.

LOL.

Have you met a cancer survivor with a new unexplained symptom?

Headache?

Cancer.

Back hurts?

Cancer.

Coughed twice?

Well, everyone, it’s been lovely knowing you.

Logically, I know bodies hurt. People get headaches. Muscles ache. Viruses exist. Getting cancer does not exempt you from all the boring, ordinary reasons a body can feel weird.

But cancer teaches you that sometimes the thing you thought was probably nothing isn’t nothing.

Once you’ve learned that lesson, it’s difficult to unlearn it.

Fear of recurrence is real.

Scanxiety is real.

And sometimes survivorship means learning how to live your life without allowing those fears to run it.

I’m still learning.

I Thought I’d Automatically Love My Post-Cancer Body

This one is complicated.

I survived.

My scars are evidence of that.

There are days when I look at my body and think:

Holy shit. Look at everything we’ve survived together.

And there are other days when I look in the mirror and grieve.

I miss my breasts.

I miss my old hair.

I miss parts of the body I had before cancer started taking things from me.

And for a while, I thought admitting that somehow made me ungrateful.

It doesn’t.

I can be grateful that I’m alive and still grieve what staying alive cost me.

Those truths are allowed to sit beside each other.

I Thought I’d Have So Much Energy

Treatment is over! Time to LIVE!

My body:

Absolutely not.

Cancer fatigue isn’t always the same thing as being tired because you stayed up too late watching Netflix.

It can feel like an exhaustion that reaches all the way into your bones.

And sometimes sleep doesn’t fix it.

So when someone tells a cancer survivor, “You just need to get more rest,” please understand that we have, in fact, considered sleeping.

Groundbreaking.

But recovery can take time.

Sometimes a lot more time than anyone warned us about.

I Thought I’d Never Want to Talk About Cancer Again

There were definitely moments during treatment when I wanted cancer to disappear from my vocabulary forever.

Instead, I started talking about it more.

I share the uncomfortable parts.

I talk about treatment.

I talk about breasts, mastectomies, chemo, radiation, menopause, scars, fear, recurrence, body image, motherhood and survivorship.

Why?

Because somewhere there is a woman sitting in her car after receiving a diagnosis, Googling everything she can possibly find.

Somewhere there is someone sitting in an infusion chair wondering if what she’s experiencing is normal.

Somewhere there is a survivor wondering why she doesn’t feel magically better now that treatment is over.

I want her to know she’s not the only one.

That’s why I keep talking.

I Thought Survivorship Meant I Was Done With Cancer

This may be the biggest misconception surrounding survivorship.

Cancer treatment can end while cancer care continues.

There can still be scans.

Bloodwork.

Medications.

Specialists.

Follow-up appointments.

Long-term side effects.

Monitoring.

And, of course, everyone’s favorite:

Scanxiety.

Cancer may no longer be the main character in your life, but sometimes that bitch still finds a way to sneak into the scene.

Survivorship isn’t necessarily the absence of cancer-related experiences.

Sometimes it’s learning how to make those experiences smaller so the rest of your life can become bigger again.

I Thought Surviving Would Make Me Fearless

You hear people say cancer changes your perspective.

It does.

But I don’t think it necessarily makes you fearless.

Sometimes surviving cancer makes you even more aware of how much you have to lose.

I look at my children differently.

I look at birthdays differently.

I think about growing older differently.

There are moments when that awareness is beautiful.

There are other moments when it’s terrifying.

I’m learning that courage isn’t the absence of fear.

It’s building a life you love while fear occasionally rides shotgun.

Fear can come along.

It just doesn’t get to drive.

Survivorship Isn’t a Finish Line

If I could change one thing about the way we talk about cancer, it would be the idea that surviving means everything is suddenly okay.

Of course we’re grateful.

Of course we’re thankful treatment worked.

Of course we understand how fortunate we are to still be here.

But gratitude doesn’t erase grief.

Survivorship can be beautiful and messy and terrifying and joyful all at once.

You can be grateful and grieving.

Healthy and scared.

Healing and struggling.

Happy and exhausted.

Hopeful and worried about your next scan.

None of those things cancel the others out.

And none of them make you ungrateful.

They make you human.

Maybe survivorship isn’t about getting your old life back.

Maybe it’s about meeting the person who walked out the other side of cancer and slowly figuring out what she needs now.

I’m still figuring her out.

But after everything we’ve been through together?

I think she’s worth getting to know.

If you’re a cancer survivor, what did you think survivorship would feel like—and what has it actually been like for you? Share your brutally honest version in the comments. Someone else may need to read it today.