Although I am now in remission, I will continue to report from my friends who are still journeying from cancer diagnosis to wellness. Here are some snippets ‘from the horse’s mouth’ on what some patients, including myself, wished they knew before, during and after their cancer pronouncement. Plus, a few tips on how to talk to someone with cancer.

I wish I knew that no matter how much support I had that I would never have felt so alone in my life. And that if one more person said, “You got this” I was going to scream. I know they meant well, but there were many times when I felt I just didn’t have it in me to believe.

People would say, “Wow! You look great.” And I wanted to say back, “You mean I don’t look sick? I don’t look like I have cancer because I haven’t lost my hair, yet?” 

I’ve never had so many different raw, scary and good emotions at once. Never cried so much. I can only hope that the thoughts in my head are far worse than reality.

I live an hour-and-a-half away from my hometown, family and kids, and so I feel so alone all the time even though everyone says they’re “thinking” about me. Sometimes it helps, but most of the time, I’d rather not hear it. I want to see and be with people.

I wish I knew that even after I was declared NED [No Evidence of Disease] that you just don’t go back to feeling “normal”. My body feels so tired and sore now, and my mind is constantly thinking about cancer.

I lost my hair like everyone else. And then, when I was told I was NED and that I should feel “overwhelmed with joy,” I felt totally deflated; like I can’t function the way I used to.

Before cancer, I sometimes felt like a lost person, and now, I don’t even know who I am anymore. My cancer IS my personality. I remember being a very interesting person before my diagnosis. But now I feel like I will never be the same person I once was.

Whatever you do…

1. Don’t look things up on Google. It will just scare the pants off of you.

2. Advocate for yourself. And remember, it’s okay to get a second opinion.

3. Learn about the side effects of the drugs you’re on.

4. Access your medical records, especially your test results, no matter if it’s a blessing or a curse.

5. It’s okay to not be okay.

6. It’s okay to let loved ones take care of you.

7. Scream if you want to scream.

 I wish I knew how much this would change my view of the world, and of myself. How disconnected I would feel from those closest to me because I just feel like I don’t relate to them, probably because I don’t even know who I am anymore.

My cancer feels like the elephant in every room I enter. Do I talk about it or not? Is it just me or is everyone in the room avoiding the topic?

I HATED when people said, “You’re too young to have cancer!” Yeah? Tell that to the kids I saw going to the same treatment centers and waiting in the same waiting rooms knowing they’re waiting for the same thing I am. I don’t care if you’re 100 years old, everyone is too young to have cancer!

RAMONA JAN is the Founder and Director of Yarnslingers, a storytelling group that tells tales both fantastic and true. She is also the roving historian for Callicoon, NY and is often seen giving tours around town. You can email her at callicoonwalkingtours@gmail.com.