Survivorship Care Plan

Just seeing the sign for oncology makes my stomach hurt, walking through the door of the oncologist’s office makes it hard to breathe.

I keep telling myself that it is a simple visit to change my medication and there is nothing to worry about.

I had nothing to worry about when I went for my mammogram either.

As soon as I stepped through the door I felt the old emotions come flooding back. My hand shakes as I sign in and I catch that familiar scent of disinfectant and latex. The woman working behind the desk doesn’t acknowledge me so I find a seat to wait my turn.

The room is still thick with fear just as I remember it.

My heart fills with compassion as I look around the room. Each person represents an individual journey with cancer. There is a woman playing with her short spiky hair, obviously grateful for its return and two other women wearing headscarves looking forward to having that much hair again.

There are loved ones looking helpless and newbies looking lost.

I feel my eyes well up with tears and lower my face so no one can see. I reach over and touch my husband’s arm just needing to reassure myself that I’m not alone, he smiles at me and covers my hand with his.

It is early in the morning but they are already behind, it is past my appointment time but there are still many people in the waiting room that were here before me. I have no choice but to wait until they call my name.

I remind myself to breathe.

As I look around the room I start to devalue myself. I start thinking that these people have “real” struggles going on and I am just here because I have side effects from medication.

I tell myself I should learn to live with fatigue, nausea, joint pain and numbness in my hand. It’s no big deal.

I recognize my thought pattern and quickly turn it around.

My needs DO matter.

Hearing my name called pulls me out of the brain chatter and I get my wits about me as I follow the nurse through the door. She has me step on the scale and I say hello again to those 10 pounds I lost over the summer.

It’s okay….I still look good.Woman holding sparkler

The nurse takes my vitals and before you know it we are alone, waiting for the doctor. I have a moment of fear that he will ask me about radiation but I know I am past the 30 day window to have it so there is really nothing to talk about.

The doctor comes into the room with his PA in tow and stands by the window shuffling through some papers. “Why are you here?” he asks. I tell him the same rundown of symptoms that I told the nurse. He still hasn’t made eye contact with me. He tells me the numbness in my arm is from surgery.

He motions for me to get up on the exam table, listens while I take 2 breaths and tells me they will call in a new prescription to the pharmacy. He shakes my hand and tells me his PA will give me a treatment summary.

He is in and out in literally 5 minutes.

And I am thrilled.

The PA stays behind to finish up the paperwork. I was caught off guard when she came up to me to go over it.

The papers were a cancer survivorship care plan.

A cancer history, MY journey, all documented on one piece of paper. I couldn’t say anything as she went over it. She pointed out the list of all my doctors, the diagnosis, the surgeries and the medication changes.

I didn’t want to look at that paper. I took it when she offered and quickly folded it up so I couldn’t see it.

Once we get to the car I take a deep breath and begin to read. There wasn’t anything on the paper I didn’t already know but seeing it in such clinical black and white stirred up a lot of emotions.

I felt a sense of empowerment when I saw the line for radiation was checked “No” and written in parenthesis was Patient Declined!

The doctor had told me to wait 2 weeks before taking the new medication to let the old one get completely out of my system. I’m all for that! The pharmacy won’t hold a prescription that long so we decided to stop on the way home and pick it up.

When I arrive at the pharmacy they tell me that my new prescription isn’t covered by insurance and costs $511 for one month.

You have got to be kidding me!

Insurance might cover it if the doctor fills out some forms and says I really need it.

Really?

The doctor wrote a prescription. Isn’t that form enough? I would think he believes I really need it if he wrote the prescription.

Apparently it takes more forms and more bureaucracy to get the expensive stuff.

I left without it.

 

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