Neglecting My Mental Health Made Survivorship A Nightmare

I finished treatment in August of 2016 and had surgery in October. I got the glorious news that my path report said “no evidence of disease” shortly thereafter. My hair was growing in, I was no longer constantly nauseated, and I was gaining my energy back. It was over. Now it was time to move on and be healthy…

The moment the surgeon read the path report as no evidence of disease, I thought I would be elated. But the truth was, I barely believed him. I didn’t smile, I didn’t cheer. I just didn’t care. It was reminiscent of when I received my diagnosis actually. I stood there staring into space, not feeling a thing. It took several weeks for me to even cry.

The same happened here: the cancer was gone, but I couldn’t feel any joy. I couldn’t find it. I had shared my journey so far on Facebook pretty openly and often in real time updating almost immediately when something would happen. I hesitated to share this news. It was like there was a wall in front of me and I couldn’t step forward.

Then the nightmares started. Scans that lit up like Christmas lights. Phone calls from doctors saying they made mistakes. Chemo again. Nausea again. My hair falling out again. The pain. I’d wake up covered in sweat, then I’d be unable to sleep. I’d spend hours in the middle of the night occupying my mind with fluff online just to get the obsessive thoughts out of my head.

I began having deep depressions. No one really knew about them though. I have always been able to hide them from everyone else. I’m a single mom so when I fall, the whole family falls. I was sick for the better part of a year so I couldn’t let the depression overcome and disrupt my life, their lives. I’d go to bed when the kids went to bed, and I would cry. I couldn’t understand why I was so scared now that I was well. I didn’t know how to move on. I was stuck. And it hurt.

I got a call in January that my oncologist was referring me to the survivorship program at my cancer center. Survivorship. So they were going to teach me exactly how I am to be a survivor? Good, I needed that.

I went to the appointment and the nurse practitioner asked me how I was doing. I said my normal, “I’m fine.” And she just looked at me. I knew she knew I was not fine. I cried. I told her everything. She just sat there and listened intently for a good 20 minutes -- I’m sure causing her next appointment to run late. She knew I desperately needed help finding my way and just let me sit there and get it all out. The best part was that she didn’t interrupt me. She just let me go and go.

When I was finished, she said she was proud of me. She said this part is almost as hard as the treatment. Moving on afterward, facing the future with doubts and fears, not knowing what to do next -- it’s difficult. Everyone expects a cancer survivor to be glad it’s over and see joy in a future of health. But when those feelings don’t come, it’s common for the survivor to struggle in surviving. Survivors don’t know that it’s okay to not be okay.

The nurse practitioner decided to send me to a psychiatrist. I have a history of bipolar disorder and already take psychiatric medication so adding on to them was something she wasn’t comfortable handling. I agreed. In fact, changing or adding meds scared me quite a bit. I had been on the same med regimen and been stable for the last 6 or 7 years. I felt like this was more an environmental problem than a chemical problem. But the fact was I was drowning in my own emotions and needed some help, even if that meant adjusting my medications.

I talked to the psychiatrist about what was going on. He asked me questions about my life before cancer and how I coped with everything going on in my life. He said that the amount of trauma I had experienced in the last four years -a painful divorce, moving, caring for my mentally ill son, a breast cancer diagnosis, moving again -- is more than many face in their lifetime, and he wasn’t surprised I was now falling apart.

I breathed out a sigh of relief. I was keeping myself to a standard that was clearly too high for anyone, not just me. And I needed someone to actually say that. Again, it’s okay to not be okay. My new mantra.

But still, when he said “Post Traumatic Stress Disorder,” I was kind of stunned. There was not one major, impactful incident that had happened in the last four years that could cause what I was feeling. In fact, there were several things that happened. I didn’t realize that these life events had compounded together to cause some deep depression episodes and debilitating anxiety attacks.

He ultimately ended up adding an antidepressant/anxiety to my medications. It’s a low dose, but within a week or so, once I got past the initial adjustment period, I felt a difference in myself. He also referred me to a psychologist for therapy. He said it wasn’t healthy to keep it all in the way I had the last several years. He said that it’s okay to be strong for my children, but I need to be weak for myself every now and again.

This is a part of treatment that isn’t really talked about. Your mental health is as important as your physical health. It is okay to be scared of the future. It is okay for you to fear that the cancer will return. You are not the only one feeling that way. You need to let your doctor know when you are struggling, when you can’t get past those feelings. Your mind is part of your body: you need to take care of it, too.

What is the biggest mental health issue you are dealing with in your #LifeAfterDiagnosis? Share with the community in the comments below

Photo courtesy of Matthew Henry.