The Never Ending Story
I first started sharing my experience about being a caregiver for my 27-year-old daughter going through breast cancer diagnosis and treatment in May of 2019. A friend of mine who had gone through a year of chemotherapy suggested that writing it down might be helpful for me as I tried to process each step along the way, and she was very right. I started a blog called “Mom… It’s Cancer” that I had promised myself would end when my daughter’s active treatment was done, because honestly at the beginning I thought it was possible to attach the words “The End” to cancer.
I did stop adding to that series once she walked out of the oncology ward for the last time, but the relief writing gave me made me want to do more and, at the suggestion of a number of people, I took everything I had written and turned it into a book. I thought that by taking that step, by putting our story out to the world, I would be content. That if I could help one mother like me out there find a resource that spoke from her perspective, the mother of a young woman with breast cancer who could honestly relate what it was like to live through that experience, I could lay down my figurative pen and let it be.
Yet again, silly me.
What I have discovered is that there are two parts to my child’s cancer experience. Part One was the call to action, the “get ‘er done” time when everything happened to kill the beast: the surgeries, the chemotherapy, the radiation, the targeted drug therapy. There was always something on the horizon that had to be organized or dealt with as cancer became the primary focus of our lives. The practical nature of this phase made it necessary for both of us to stay in our heads a lot of the time because there were so many physical side effects that needed managing, so many logistical puzzles to solve, so many figuring out Plans B, C and D just in case… like deciding who she would feel comfortable with wiping her butt if I was taken out by a virus. As an aside, I never had to actually do that – one more thing to be grateful for.
Part One was unbelievably difficult, and I never in my wildest dreams could have imagined that anything else could even come close. I never would have believed that something could ever take me to the ground in a heartbeat, could close my throat in despair, could have me wanting to break dishes and scream at the top of my lungs in pure frustration the same way watching my child suffer through treatment did. But here it is. Part Two is survivorship, and what comes with that is sometimes really, really hard.
And I wasn’t even the one who had cancer.
When she was in active treatment we would hear about the lifelong impact of chemotherapy on the body, but I was concentrating more on there being a life to live at the time, so I put that little spark on the back shelf to gather some dust for a while. In survivorship that little spark has grown into a full-blown wildfire with some new flare-up seemingly popping up out of nowhere much too often. I keep shouting at the universe enough already after she calls to tell me about one more thing that cancer has taken from, or done to, her body.
At least when treatment was happening, I could know that something was being done, that if it was working the cancer cells would die (if only they were sentient beings and I could say a miserable death). Now, all I have is hope that none of them went into hibernation and are just waiting for me to relax into her NED-T status so that they can jump out and crush me again. In survivorship, I experience the anxiety of waiting for my child’s test results over, and over, and over again to see if it’s still dead.
I get to hug my daughter and breathe her in when she is able to visit, knowing how very lucky we are that she is still here, that I can take those tearful phone calls when she is at the end of her rope. In survivorship there is such a deep well of guilt that, even as I am writing this, I know that some of you will wish you could tell me to my face how much worse things could be, that she is not living with metastatic breast cancer. I know that, yet still I despair. And the well of guilt gets deeper.
There are people in my life who still think it’s possible to attach “The End” to cancer, that I should somehow have been able to move on from this experience and I should do more to live in the present instead of the past. But in survivorship, I don’t look to the past at all. I look to an uncertain future and my Plans B, C, and D have to include what I would do if I picked up the phone and heard one more time the words that changed my life forever.
“Mom… It’s cancer.”
The truth of the matter is that in survivorship I am exhaustingly, endlessly afraid. And on top of that because of its association with my daughter going through chemotherapy, I can’t eat chocolate.
And that just sucks.
Mother…Grandmother…Librarian…Military Spouse…Caregiver…Family Life Educator…take your pick! Debbie Legault was born in British Columbia, Canada to a former RCAF airman father and a Scottish War Bride mother and has lived in other Canadian provinces, Germany and California. She has been married for 36 years to a Canadian Air Force Veteran and credits him with filling her life with adventure. When Debbie Legault’s children look at family photos they often comment on how many different hairstyles she has had and that pretty much is her story, that her life has taken as many turns and led her down as many paths as her hair has changed! Her latest role is as the author of Mom…It’s Cancer, the story of supporting her 27-year-old daughter as they experienced breast cancer diagnosis and treatment.