Talking About Death From Breast Cancer with Family and Friends
I also read the Washington Post advice column -- about how to talk about cancer and death, if your prognosis is not good -- that PJ Hamel and Natalia Hernandez wrote about this week. You can see PJ's post from Monday for the text of the original letter and response from Carolyn Hax, the advice columnist. The letter writer, "V," was distressed that her friends tried to reassure her when she talked about the possibility of her death from an aggressive cancer. Reading it took me straight back to the memories of my own diagnosis with inflammatory breast cancer, a less common, aggressive form of breast cancer.
I did need to talk about the possibility of my death -- sometimes -- with some people. I found no comfort from all the people who told me about how their Aunt Minnie had lived for 20 years since her mastectomy. Aunt Minnie might be alive, but my friends Catherine and Marian weren't.
A blithe reassurance that all would be fine didn't help me a bit.
Of course, a lot of the folks reassuring me didn't know how serious my situation was, because it was too hard for me to talk about. I don't think I talked about the statistics out loud with anyone except my husband. Sometimes when they told me about Aunt Minnie's success, I was up to inquiring if they knew what type of breast cancer she had and explaining that I had inflammatory breast cancer; sometimes I just thanked them and went on to another subject.
The letter writer didn't give any information other than that she was in treatment for an aggressive cancer, so I was struck by how many of the people who commented on the column assumed imminent death.
Aggressive cancers these days are very treatable. I've had no evidence of cancer in my body for almost ten years now. Yet, despite my personal experience of many people who have recovered from aggressive cancers of all sorts, when my husband was diagnosed with melanoma last summer, I was right back to the same emotions I had when I was diagnosed with IBC.
My husband and I both had an aggressive cancer by my definition of aggressive -- a fast-growing cancer with a high mortality rate -- but his was caught at Stage O and mine at Stage IIIB. I found it didn't make any difference to me. I was scared. I was imagining the rounds of doctor's appointments, the painful treatments with unpleasant side effects, the possibility of his death. I didn't begin to let go of those worries until his final pathology report came back saying they had gotten it all.
Aggressive or slow-going, cancer brings up those fears in all of us. I went through the same emotions when my now 91-year-old father was diagnosed with prostate cancer years ago.
As a cancer patient, I learned that I had to let people know what I needed. I did need someone with whom I could talk about my deepest fears. The first of those people who came into my life was a thyroid cancer survivor friend, who shared his own memories of the fears he experienced. I asked another friend to be my "pastor," and called him several times when I was in panic mode. The oncology nurse who led a support group I belonged to was a wonderful help. I didn't feel really hopeful until I talked to two women who were long-term survivors of the same rare form of breast cancer I had.
I also learned that the people who loved me the most were coping with their own fears and pain on their own time schedule. They might be still back in the denial stage when I moved on to anger. Sometimes they needed ME to reassure THEM. It's unrealistic for cancer patients to expect friends to discuss the possibility of death whenever the patient wants to.
Some friends are good at bringing casseroles, and some are good at listening to fears. Patients who need to put the scary stuff into words need to identify the people most likely to be able to handle it, and then say something like, "I know this will be hard, but today I need you to hear what's really worrying me."
However, a support group is probably the best place to talk about our deepest worries. Our friends and families are carrying around their own load of fear for us. They can't really understand how the chemo is making us feel. We probably really shouldn't burden them with how gross the radiation burns are. A combination of face-to-face and on-line support groups gave me a place to talk about the scary stuff with other people who really knew how I was feeling.
As a friend of people with cancer and other serious illnesses, I've learned to take their lead on how much detail they want to share. Because they know I've survived against the odds, people now often come to me to discuss their illness. I try not to tell them that everything will turn out great.
I listen and follow the conversation where they take it.
The relationship between cancer patient and loved ones is a tricky thing. Knowing when to cry, when to laugh, and when to bring a casserole requires listening to both what is said and unsaid.