There have been three notebooks sitting on my wife Susan’s bedside table since the night she passed away, and while I’ve been curious to look through them, until now I’ve refrained. It seemed to me an invasion of privacy. I woudn’t have read them when she was alive, so what gave me the right to read them now?
But then I got to thinking that much of what she’d written was probably about her cancer, and wouldn’t it potentially be useful for people to be able to get a window into her process with the disease? For people living with cancer to know that they’re not alone in their fears, their pain, their uncertainty and anxiety, and, sometimes, their doubts and despair? For families to gain a better insight into the thoughts and feelings of loved ones who have cancer?
So about a week ago I decided to go ahead and read what she’d written. It turns out I had been right, the vast majority of it was effectively a cancer journal. In fact, it begins, “First day of journaling my journey with cancer.” Reading it has been something of a mixed bag – painful, yes, but at times funny, uplifting, inspiring. So I’ve decided to share her words with all of you.
The journals span from 2015-2020, but with significant gaps, entire years when she wrote nothing. And toward the end, I could see not only her thoughts becoming more jumbled but her handwriting deteriorating as well. It’s not pleasant to be faced with yet another visible, palpable manifestation of the tumors that were consuming her. But if you follow this all the way through, you’ll see that Susan was defiant to the end. That she was filled with love for her family, her colleagues, her life.
May 5, 2015
First day of journaling my journey with cancer. Started week 2 of chemo/radiation yesterday and am still feeling good.
Have some itching around my portacath [A portacath is a small chamber or reservoir that sits under your skin that allows chemo and other drugs to be pumped directly into a vein close to your heart.], but can’t tell if that is from the sunburn or chemo. Left the office at my usual time of 6:15 and everything seems a bit too normal, just like before, with work, rushing home for dinner, thinking about the stuff I have to do. What I REALLY have to do is focus on healing and getting healthy.
How can I get in touch w/ my body and emotional wellbeing? Reading the comments on Matt’s blog [fieldnotesfromfatherhood.com] earlier, it struck me that one woman was angry about us having been inflicted with this. Others have expressed sadness. I don’t think I have felt either mad or sad. Am I suppressing? In denial? Can I let myself feel these things?
I can joke and laugh about my stoma [the stoma is the opening in her abdomon where the large intestine opens directly into a colostomy bag] and all the noise it makes at inappropriate times, but the stinging I feel on the surrounding skin really hurts. Fixing this problem and focussing on the little things I can do is easier than dealing with the big changes I need to make.
May 7, 2015
I had an epiphany this morning that made me so glad to have this journal to record it in. Every morning, my trip to the hospital consists of climbing an extremely steep hill from the metro station up to the hospital. I am usually running late, so I walk at a fast pace. Invariably, by the time I get close to the top of the hill, my calves ache, my backpack feels heavier, I am short of breath, and each step feels harder and harder to take. Also invariably, once I reach the top and it levels off, all of that fatigue fades away and I feel like I could even sprint if I needed to.
This is how I imagine the course of my treatment will go. At the beginning, I feel fine and can keep up a brisk gait, even enjoying the sun and lovely sweet smell of the jasmine-covered wall I always pass. As sheer gravity and not being fit start to weigh me down, my pace slows until each step seems like I have lead weights strapped to my feet. I expect the radiation and chemo to take their toll at some point, slowing me down and acting like the lead weights keeping me from moving and doing everything I want. I also expect and hope that once my treatment ends, I will experience the lightness of being that you can only feel after carrying a very heavy load then having it lifted off your shoulders. What a gift.