Wednesday, February 4, 2015

Cancer stories

Cancer narratives have two arcs: the person whose cancer has been treated and is highly unlikely to recur and the person with terminal cancer. The stories like many stories have predictable narrative lines. For the person who has been "cured" the narrative is one of courage. That person has fought the disease and has "won". She has been courageous. We admire his valor and perseverance in the face of this disease. She is a survivor. The other narrative is one of inspiration. The person who is dying inspires us with her wisdom, his acceptance, her equanimity in the face of death. He has wonderful insights into life and living. We feel so good that in the face of death she can continue to be sweet and loving.

Those narratives while in some cases have some truth they do not tell the whole story. I cannot tell the reality of those for whom cancer is a death sentence in the foreseeable future, but I can tell what I see. And I can certainly tell a different story for one whose cancer has been "cured".

Someone (or perhaps several someones) referred to me as courageous. I certainly was not courageous. Numb might be a better descriptor. I had a diagnosis of cancer. This is what I needed to do. This is what I have to do today. This is what I do today. It is what is in front of me. I really am not making a choice. I spent the first month in denial. A perfectly acceptable place to be for a while (though a friend kept telling me I was in denial to which I responded, yes, I know). Then a bit of grief. But mostly anger. Anger at the doctors who ignored and belittled me, who did not take me seriously.  I remain pissed to this day at the doctors. Anger at God for giving me cancer when no one in my family had cancer.

I cannot speak personally for what it is like to know that the cancer is going to kill you sooner than you imagined that you would die. I do know that all is not acceptance, lightness and sweetness. From people I have known there is disappointment, grief, anger. There are days when it is just not good. There are days of railing against God, the universe, the doctors. There are days of weeping for knowing that this life will end. And for some (many?) the end brings pain that even morphine can't relieve. There is suffering, pain, humiliation, loss of dignity.

When we assume, no require, that those with cancer will be inspirations to us, we burden them. We add to their suffering. They cannot share their real feelings. Their misgivings. Their fears. Their pain. Their anger. In addition to physical and psychic pain, we add the pain of isolation. We who cannot face our own mortality ask those who actively are to provide us with solace. We should be providing them with solace.

When we tell those with cancer that attitude makes a difference, we burden them. When we tell them that acceptance is important, we burden them. When we refuse to listen to their pain, their anger, their fear, we burden them.

For those who are the ones who face the end beaming with joy or at least acceptance in every moment of their journey through cancer, I am delighted. I am not you. I believe that there are others like me in this respect.  All I ask is that I be allowed to wallow in my pain if I need to. That I be allowed my anger if I need it. That you listen to my fear and not tell me everything will be all right. It won't be. 


Robin said...

This reflects part of what I mean in the other discussion, the one about saying "I know." We DO have experiences that others do not know, and the sound bite narratives are not much help except to those who think that now they somehow get it.

When I made a brief comment one day about the four months of unremitting pain involved in BC and reconstruction surgeries and procedures, a friend looked at me in shock. I think she thought I bought pink t-shirts and bounced (pun intended) back into life.

Now the NYT has published an interview with a physician whose post-cancer experience has caused her to realize that the medical profession has ignored the obvious. I said that this is not news to cancer survivors -- although I am glad that people are motivated to do something about it.

Mary Beth said...

I couldn't agree more. My spouse's cancer treatment was punctuated by people asking how he was, hearing that it was really, really hard, and telling me, "But he has to stay positive!" What a crock of shit.

"No, I don't think he does," I'd say. "I think he gets to feel any damn way he pleases."