Have you ever wondered what people in cancer support groups talk about? Everything.
In an Op-Ed piece in LA Times, Nora Zamichow wrote about her husband’s death at fifty-eight from a brain tumor. She made the interesting observation that doctors have a lot of trouble saying the word dying. She writes, “In a recent study of doctors whose patients were dying, only 11% said that they personally spoke with their patients about the possibility of death.”
On one hand Zamichow asks why she didn’t know her husband was dying, on the other she speaks of “an obstinate desire to cling to every shred of hope in spite of evidence to the contrary.” Could it be that doctors have the same desire?
She says we have a medical system that “treats death as a separate event having nothing to do with life.” All those observations are true. But how many non-medical people actually use the “D” word, as Zamichow refers to it? Yet don’t most people have our own pet phrases – went to a better place, passed on or simply passed? The author takes doctors to task for their euphemisms and avoidance. She questions whether it’s lack of training or an admittance of defeat that keeps the word perched on their tongues, never to be uttered.
The closest her husband’s doctors got to it was to recommend the H-word, hospice – a stand-in for, “hopeless?” Hopelessness and their own helplessness is what some doctors have trouble dealing with. They know when hope of cure gone. They know when we’re not going into remission when we will never return to our lives as they were. They know that death comes even if they can’t predict exactly when. It comes even when our doctor is aware that we’re not ready.
Everything. Today, our women’s cancer support group talked about death. Again, one of our members is dying. She has been the support goddess for all of us. Before the recurrence of her long-gone cancer, she noted, “I really don’t want to be part of this club.”
Now, she is getting palliative care. Did her doctor say the word, or did he and others withdraw, and leave silent the answer to her question, “What else can you do?”
In a roomful of women who have heard the C-word and talked openly about the D-word there is sadness but not gloom. We engage in anticipatory mourning for our friend and even ourselves. We don’t brag about our survival skills, we brag about our latest test that “didn’t show anything.” Anything meaning cancer. We wait for the next marker, which will tell us where we are and maybe even who we are. We’re not unusually brave, but we aren’t afraid of the D word. Could our doctors understand that?
Recently, I experienced a milestone. My radiation-oncologist discharged me. I considered him my main guy. Now, he only wants to see me once a year. When I told my group my news they all congratulated me and then asked how I felt. They already knew. Scared.
The group facilitator asked me to say more. What did this milestone mean to me besides insecurity?
“It means I have moved to a new phase, that I have to give myself permission to think of myself as…” I hesitated. The word that came next sounded arrogant, “well.”
There, I’d said it, the W-word. When did that become so foreign? When did the one-foot-on-the-banana-peel self-image take over? When did I stop identifying myself as well?
“Chemo ages you,” my young oncologist said a while back when I complained of this annoying post-treatment fatigue. Some days I feel 102 inside, but no one would guess unless I shared with them what my everyday challenges are.
My radiation oncologist knows. He wasn’t sending me off unattended. He was passing the baton to the four specialists who are caring for the downside of what he did for or to me.
My right of passage inspired a fascinating discussion about aging and how cancer treatment affects our experience. We all admitted that we didn’t know anymore what aging felt like. That we would never would experience normal aging.
Each woman in this support group knows what it’s like to leave her old self behind. As we talk, I begin a familiar inner dialogue of who I used to be. Then I stop myself. My memory of my old self becomes more vague as time passes. I talk about her less and less. I have mourned her passing. I have come to believe this post-cancer body is just as dramatically different as the body that morphed from childhood to puberty. I become acquainted with her every day, and every day she is more me. I say that, and everyone nods agreement.
We talk about embracing the next stage of our lives. It doesn’t resemble normal aging. It isn’t healthy and well. None of us even know what to call it. Perhaps it’s what happens before death.