By “Knot Telling”

Do not tell me how to feel!

For those who may not read through to the end, here is the take home: you do not get to tell me how to feel or what my attitude should be, no matter who you are.

Sure, it’s more comfortable for me and the people around me when I’m have a positive attitude, but that does not mean that I have to live “all bliss all the time” like some insane American cable television station. Being positive does not mean pretending that nothing is wrong because… cancer, people!

A young woman who, I think, just turned twenty-two posted this on her Facebook page: “That’s the thing about pain. It demands to be felt.” She knows what she is talking about, by the way.

It does no good to pretend that emotional pain does not exist. It does no good to pretend that it’s not there. The only way I’ve ever found to get through pain is to recognize it, sit with it, walk through it to the other side. Sometimes that process leaks out into the environment and then I don’t smile prettily at everyone around me. Sometimes I’m snotty and bitchy and generally not one of Jesus’ little sunbeams. Sorry about that, but… cancer, people!

Here’s another news flash. A positive, determined attitude will not cure cancer, no matter what the popular media tell you. The following quotations are from the American Cancer Society:

In 2010, the largest and best-designed scientific study to date was published. It looked at nearly 60,000 people, who were followed over time for a minimum of 30 years. This careful study controlled for smoking, alcohol use, and other known cancer risk factors. The study showed no link between personality and overall cancer risk. There was also no link between personality traits and cancer survival.

[…]

To learn more about attitude and survival, researchers looked at the emotional well-being of more than 1,000 patients with head and neck cancer to find out whether it affected survival. Over time, those who scored high on emotional well-being showed no differences in cancer growth or length of life when compared with those with low scores. Based on what we know now about how cancer starts and grows, there’s no reason to believe that emotions can cause cancer or help it grow.

Read the whole article here.

The following is from the same source, the American Cancer Society, and is even more explicit:

Cancer can’t be controlled by a positive attitude.

Cancer is not caused by a person’s negative attitude nor is it made worse by a person’s thoughts. You might be better able to manage your life and cancer treatment when you are able to look at things in a positive light, but that’s not always possible either. It’s much healthier to admit that having cancer can make you and your loved ones feel sad. Once you can admit that reality, it is easier to get on with your life, whether that life is measured in days, months, or years. Some of those days will be good, some will be not so great. Most of us know that this is the natural course of life anyway – with or without cancer.

People may tell you about studies that show that patients with a positive attitude live longer. These studies often offer anecdotal evidence (people’s stories) based on too few patients and questionable research methods. No solid, well-accepted research has shown that a patient’s attitude has anything to do with whether the person will live or die. There are patients who live longer than they are expected to, but researchers do not know why. If they did, they could certainly use that information to try to help many people. So don’t let the positive attitude myths stop you from telling your loved ones or your cancer team how you feel. People with positive attitudes still die from cancer. People with negative attitudes often live a normal lifespan despite their cancer. Everyone gets through cancer in their own way.

Full article is here.

So. Of course it is nicer for everyone to pretend that we are all just happily trekking along together and that the cancer thing is trailing along in the shadows at the side of the road. Most of you can do that. I cannot. Other people who have cancer cannot do that. For us cancer is right there, sitting on our shoulders. Sometimes it rides along quietly, but at other times it cackles and jeers and hoots and mocks and kicks at our back and sides. That is not to say our life is “all cancer all the time” because it’s not. But it is never cancer free.

So you do not get to tell us how to feel. You do not get to tell us that our attitude will make us better, because it will not. You do not get to tell us that our attitude will help us live longer, because it will not. If you choose not to walk alongside us, I do understand. I certainly did not choose this for myself, and I don’t expect you to take it on yourself, either.

But if you do, if you place yourself on the road as someone who cares, as someone who is willing to support someone like me, may you be abundantly blessed. Just please do not expect me to be a sunshine-and-rainbows girl all the time… because cancer.

”Knot Telling”  is the pseudonym of a retired health care provider who is living with metastatic breast cancer and blogs at www.tellingknots.com. You can follow the author on twitter at @knottellin.