Here's Why I Don't Call It My Leukemia 'Journey' (or 'Battle')
One time when I was interviewing a breast cancer survivor for a story on “the pinking of America” – a trend towards turning everything pink without looking at real issues – we detoured to the language of cancer. She said not to call it her cancer journey. It made her angry when people called it a journey, as though it was a romantic trip or a romance adventure like the knights in shining armor of Camelot.
Of course, if you have had cancer, you have earned the right to call it whatever you want. I don’t judge people for calling it a journey. But I agree with that woman I interviewed. A journey is something pleasurable. A journey is what my daughter and I took last February, went we went from our homes on the East Coast to visit cousins in California. That’s when the pandemic had started and we thought it was just some harmless virus!
“The punitive or sentimental fantasies” surrounding cancer
Back in 2008, when I relapsed for the second time, a nurse told me that I could have a pity party for a day but would need to put on my boxing gloves the day after. The fight imagery worked for me at the time. But I understand why many people dislike the word “battle” in describing cancer treatment. I don’t like it much either.
The brilliant writer Susan Sontag delves into these ways of describing cancer in her 1978 book “Illness as Metaphor.” Kirkus reviews (and others) called it “a liberating book.”1
She looks at the sources of the language used to describe cancer, which is unlike that used for most other diseases. For example, you don’t hear people talking about their “diabetes” journey. An article in the British Medical Journal summarizes why she called out “the punitive or sentimental fantasies” surrounding cancer.2
“The militaristic language associated with cancer... riles Sontag (and many cancer patients) — from descriptions of the biological process (an invasion through the body's defenses) to treatment (‘a war on cancer’),” the article states. “Such a view of cancer burdens patients: not only do they seem to have to shoulder some responsibility, they also have to shoulder arms against it.”
She was not alone.
I fought, but I don't call it 'my battle'
“Battle metaphors can put a great deal of pressure on the newly diagnosed patient,” according to an article in Scientific American. “Individuals describe feelings of letting friends and family down when they are not seen as constantly ‘fighting the cancer.’” About a decade later, she followed it with “AIDS and its Metaphors.” The two are available as one volume.3,4
Sontag wrote the “Illness and Metaphor” while getting treated for breast cancer. She later survived uterine cancer also. But sadly, in 2004, she developed a blood cancer, myelodysplastic syndrome (MDS), probably as a result of her treatment. (This is called “therapy-related MDS.”) She got a stem cell transplant, but it failed. At the time, treatment options were more limited than they are now, and she died the same year.5,6
It sure sounds like she fought. I fought. But still, I don’t call it my battle. I mostly use the word treatment. As in, “When I was getting treated for leukemia.” Or “during my leukemia treatment.” That doesn’t do justice to all I went through. Or to what most blood cancer patients go through. It sounds so understated... a little too neutral. And it doesn’t fit in a sentence like “my blood cancer journey” or “my blood cancer battle.” But since I don’t use those metaphors, I’m at a loss for better ways to describe it.
Do you have any ideas?
What type of blood cancer are you or your loved one diagnosed with?