I am reposting something I wrote in 2007.  I will be a 20 year cancer-free survivor, my anniversary is in about a week, but I still remember living with the uncertainty I felt after treatment was completed.  Living with uncertainty I think was the greatest challenge in what I now think of as my “cancer career”.   I will tell you the sense of uncertainty fades with time.  Maybe this will help some of you?

Living in Limbo

I loved a book I discovered when I was a 3-4 year survivor. It was written by Glenna Halvorson-Boyd (a 10 year oral cancer survivor) and Lisa K. Hunter (a 3 year melanoma survivor). They said they wrote the book they’d needed to read but that had not been written, “Dancing in Limbo: Making Sense of Life After Cancer”. After interviewing many cancer survivors, they discovered that they all shared many of the same feelings.

Cancer survivorship is a new frontier. In my own lifetime as a nurse, I was sometimes part of a conspiracy long ago to help families keep a cancer diagnosis secret from the patient. Sometimes families decided to spare the patient the knowledge of their disease; after all, what could they do if they knew do except anticipate their own inevitable and painful demise? Cancer was always equated with death. BTW, research later discovered that these patients knew their diagnosis, but also knew they weren’t supposed to know, so were denied support. Back then the word cancer often wasn’t even spoken aloud….it was often referred to as “the big C”. It was the most terrifying diagnosis one could receive…..”please don’t let it be cancer!”.

So there isn’t a wealth of knowledge about cancer survivorship. I’m going to quote from the first chapter of the book “Dancing in Limbo: Making Sense of Life after Cancer”. I was ever so grateful someone had identified and put into words exactly how I felt. (pp. 1):

“There is a cruel myth about surviving cancer. In this myth, when medical treatment is successful, the story ends. Having survived cancer, we pick up our lives where they were interrupted and carry on- with increased gratitude for the simple acts of daily life and clarity of purpose that only a brush with death affords. In this myth, cancer is a blessing in disguise.Though this myth has some truth to it, it is cruel because it is impossible to live. The real story does not end “happily ever after”. Instead we live in limbo: after cancer, we know we are on uncertain ground.”

They also point out that we are different from those who have survived other life-threatening traumas in that “as cancer survivors we hope we are cured and proceed as if we are cured, but we cannot be sure”. Cancer outcomes aren’t known for years, so the limbo is a lasting one. Another appendiceal cancer survivor trying to reclaim her life recently spoke of the possibility of recurrence, which is common with appendix cancer, as a ”grey cloud” that is always present.

Someone suggested to me the problem is that we just don’t have enough faith. I disagree. I’ve read essays by clergy survivors who experience the same struggles. Read the Psalms….faithful people struggle.

I’ve been in the cancer survivor community for awhile now, and over and over I see the disorientation of those who finish treatment and try to resume their former “normal” life. They are afraid to say they are struggling, after all, they’ve survived cancer, shouldn’t they feel grateful? They will admit their struggle to other cancer survivors, but not family and friends as they are afraid of being seen as ungrateful. I sometimes want to welcome them to Limbo…….not a bad place really, but a place of transition. A new journey of sorts. The road to creating a new after-cancer normal.