Survivor's guilt and PTSD are two "invisible" struggles that cancer survivors may face. Read how one survivor pushed herself to work through the pain and navigated her own survivorship.
My cancer story is a little different. My husband Frank wasn’t feeling well one holiday season and went to three different doctors who all gave him a clean bill of health and said it was due to the "stress of the holidays". Three weeks later, when he came home from work one night, he looked like he had a stroke. Without thinking, I immediately drove him to the hospital.
When we arrived, he was comatose. I explained his symptoms and history and within a few hours we had a diagnosis. "Brain cancer- GBM."
The next day, we heard "2 tumors, prognosis less than 18 months. Get your affairs in order."
Over the next six months, we heard "Doing well; even better than expected"
followed by, "Misdiagnosed- Central nervous system brain lymphoma"
; followed by "Change in treatment and chemo needed for this kind of cancer".
It was a nightmare for sure. But somehow we endured all of it. Even bringing us laughter among the tears, with more love than ever. Frank passed away exactly 3 years to the day of his diagnosis on Christmas Eve. The holidays would never be the same.
Two years later I would receive my own diagnosis: "Breast cancer, in both."
It was caught very early. I had lumpectomies and radiation. No chemo because my chance of recurrence was low on the Oncotype Test.
My journey of our cancer diagnoses, treatment and survivorship and lack thereof, brought all sorts of emotional states: disbelief, fear, lost, overwhelming responsibility for someone's care, the need to research, research and more research something so foreign and unimaginable, the laughter and tears, being weary, unsure, and a very deep gratitude, but also in my case two biggies- Survivor's guilt and PTSD.
Because every time I read stories of the many children who receive a cancer diagnosis and the treatment they endure my heart sinks heavily in my chest. Any time a friend or relative is going through gruesome chemo and its devastating side effects I have tears in my eyes. Any time I hear of other breast cancer survivors who have undergone extreme and repeated surgeries plus a full array of treatment, I pray for them.
All this brings the nagging question: "Why me?" Not as in, "Why did I get cancer?", but in the context of "Why was I one of the so called lucky ones whose cancer did not take a dismal toll?".
"Why did I survive when others didn't?"
"Why am I healthy, when others are not as fortunate?"
"Why was I spared a more serious diagnosis, treatment and road to recovery littered with the many obstacles? What do I need to do to survive?"
No matter how many times I ask, the answer is still the same: "It is unanswerable." Does it make my guilt "less than?" No, it doesn't.
I know on an intellectual level that I am not responsible for Frank's diagnosis or passing or anyone else's for that matter. I know I did and do everything I can to help them. But being a highly empathetic person, a "fixer" by nature, I can't help but compare the many stories to my own. And it's hard to admit you can't "fix" some things. But, I can give my support to others when they need it most, to share my information, experience or the resources I have. It's just what I do to stay connected. It's the bond I have with all those experiencing cancer. And I guess it's the connection I never want to forget.
Along with survivor's guilt I also experience PTSD because I perceive what I have witnessed and experienced as a traumatic event
that rocked me to my core: the shock of Frank's diagnosis, the grueling range of his treatment, the long waits and endless appointments, the never-ending driving, and the final days of his life.
I can still smell the hospital and have the feeling of needing to shower to wash it all away. I see the MRI and PET scan machines and am terrified of them, as Frank had so many scans it became uncountable. I remember the IVs hanging with chemo so toxic that it had to be covered with a paper bag to shield it from the sunlight. I remember the horrible, sometimes unsympathetic nurses more often than not. I remember the long days and even longer nights of hospital stays.
I remember how we developed our routine of watching movies and holding hands in the hospital bed after dinner. I remember trying to make a really bad situation better any way I could. I remember the horribleness of it bringing us closer together. We were always a team, but this brought a new meaning to it. Then I remember my scans and radiation treatments. To this day I can't have a scan unless I’m medicated. I'm anxious driving long distances. I remember spending my nights alone. I remember it all like it was yesterday. It will forever be etched in my mind. I've become hypervigilant expecting to be surrounded by danger. Vulnerability has a new meaning for me.
Cancer has changed my life. Is it worse? Is it better? I'd have to say it's different. It has helped me prioritize my life for what matters and given me no patience for the everyday petty-minded nonsense many get caught up in. It has given me the strength to make changes in my life, which I would not have made before. It has given me a window to see life from a different view: the beauty all around us, how precious life is, the need to be connected to others, the need to love. Cancer puts everything in perspective.
When I push myself through the pain that others can't see, I can more readily accept things for what they are. When I let it go, I can find some peace. I come to terms with it.
What choice do I have? I have to play the cards dealt to me. That is my choice because sometimes in life we have to learn to hold on and let go.
When I concentrate on all those things, I find the sting of "survivor's guilt" and PTSD fades as time moves on and as I move forward with my life. The only constant is change. Embrace the newness. The present is all we really have. Have faith in your journey. Be courageous!
Do you struggle with PTSD or Survivor's Guilt since cancer? Share your thoughts in the comments below!
Photo courtesy of Brett Curtiss