There are times you might recall being filled with dread as a child, like when you were home alone playing with something you knew you shouldn't and broke it. Maybe when you were called to the principal's office in school, you felt it on that long walk there. Or when you didn't do the chores your mother asked, you to and you heard her pull into the garage. Often, my life post-cancer reminds me of those times.
There are terms that get tossed about like a ball in a ball game: anxiety, survivor's guilt, fear of recurrence. One thing that has been constant for me through it all has been a sense that this game called "Life With Cancer" won't ever be over.
Often people who have never had cancer often try to tell me that I will never have cancer again, that I have beaten it, won the battle, kicked its butt and that I am a warrior. They don't realize that I educated myself about the ugly disease I was diagnosed with. Because I have educated myself and because I have spent much time in a cancer center, I know there are never any guarantees. This reality exists in life for all of us – we have no guarantees about anything. However, it can seem amplified once you experienced all that goes along with a cancer diagnosis. So, when people assure me that I am done with this thing called cancer, their words feel like words I can't trust. Not that I am borrowing trouble or that I just look at the glass half empty, but the reality is there.
I understand that inflammatory breast cancer recurrences usually happen within the first couple of post treatment years. Yet just last week I read about a woman who was many, many years out from her initial diagnosis that had just received news of cancer metastasis to a vital organ. Three weeks before that, another friend who was diagnosed just after I was – 11 years ago – had received the same news.
A parallel experience for me was when my daughters were young. Because I am a survivor of childhood sexual abuse, I was very protective of them. When friends would tell me that I was being too protective, they would often say, "nothing is going to happen to them." The irony was something they couldn't grasp. They were telling a woman who was abused as a child that she shouldn't worry because her children wouldn't be abused. Think about that. But they didn't understand how their words brought me no comfort. They meant well, and I did appreciate that.
I have a friend who lost a child when she was struck by a car while going to the school bus. My friend saw the whole thing, her daughter had just gotten out of her car. While we were going to lunch the other day, right in front of us, a woman almost got hit while crossing the street. My friend had to take a minute to gather herself in the passenger seat of my car. Because her reality included losing someone after having been hit by a car, she knew first-hand how close that woman was to losing her life. In the moment, I knew she understood how I feel as I approach each day as a cancer survivor.
Not every survivor experiences this reality the way that I do. But I know that am not alone or unique in the struggle. I have spoken with many others who feel the same way. I voice this only in hopes that someone may read this and understand the need for grace to be extended to a survivor in their own life. We may get irritated before check-ups, or worried when there is pain. It may come out in times that you least expect it, like before a holiday as it did with my family one year. I was experiencing some excruciating back and hip pain. Yet I had been preparing for Christmas and trying to make it the most special family Christmas ever. Of course, I didn't share this with my family ahead of time. When one daughter decided to spend Christmas with her boyfriend, I fell apart, over reacted and was not my normal self. No one knew in those moments that in the back of my mind I thought what if this is my last Christmas. I found out later that it was a disc herniation, not cancer, and have since been able to talk about what I was thinking in those days. At the time I couldn't give voice to what I was feeling, I just couldn't find the words. We all process things differently. If you have a survivor in your life and they start to act odd, realize they may be struggling with some fears and try to love them well through it, as my family continues to do.