What Happens After the Messy Middle?

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The messy middle is what I’ve called the post diagnosis and active treatment era of living with cancer.

But survivorship? Being a survivor? Wow, even writing that still seems like a foreign word to me. I wasn’t ready for what that brought on.

The word survivor felt like a foreign word. It still does. That’s what cancer is. A foreign language. A foreign country. For which I had no map to navigate it with.

I wish I knew that cancer was so much more than the messy middle. More than the diagnosis, meal trains, pre meds, chemo meds, “active treatment,” post chemo symptoms, hair shedding, hair loss, tears, anger, so many radiation appointments, radiation burns and all the hospital gowns.

They give you all the outdated brochures and pamphlets on how to get through treatment. Does anyone ever read those?

They give you a nutritionist and dietician to meet with during your chemo appointments.

They give you a radiation simulation appointment to prepare you for radiation. Yup, that’s really a thing.

They give you all the scratchy, hospital gowns and plastic bracelets at every single appointment.

The messy middle.

What happens after the messy middle?

What happens when you finish active treatment?

Where are all the brochures to help you after you ring that bell?

I wanted someone to hand me information on what the next day, week, month and year would be like after treatment. Because you’re still in murky water. You’re treading through foreign territory still.

What happens next?

What the hell am I supposed to do with my life now that I’m done with the messy middle.

This is what I needed.

I needed mental health resources.

I needed help navigating sexual health problems.

I needed to see a pelvic floor physical therapist.

I needed to see a cardiologist.

I needed to see a lymphedema certified therapist.

I needed help sleeping at night, without prescription meds.

I needed help addressing anxiety (depression, PTSD, you name it).

I needed to learn how to eat right during survivorship.

I needed a support group of people my age in their own survivorship journey.

I needed mental health resources.

That’s what survivorship needs. All of these things and so much more. So much more education, awareness, attention and conversation.

Because damn you for making the world think that just because treatment ends, our cancer journey and experience ends.

If anything, we need more help, more education, more resources during survivorship. So that once we dig ourselves out of the messy middle, we’re not in a foreign country any more.

We’ll know we’re ready for the next part. And it won’t seem so… foreign.