Miss Connely's Rules for Cancer Manners
"Is that nice to say?" I would often ask my students. You can think anything you want but think about it before you say it aloud. Telling a classmate their hair looks funny isn't going to help you make friends. Words hurt.
I would remind my students that little kids immediately say what comes into their minds, but third graders should know better. Use your brain filter, I explained. We use filters to stop bad things from getting into something useful. Ask yourself before you say something, is it helpful or kind?
Adults should follow this rule, too. You might think you're teasing, but it's only a joke if everyone is laughing.
I was diagnosed with myelodysplastic syndromes (MDS) in 2017, shortly after I retired from teaching. MDS is considered rare; I had to learn how to pronounce it, spell it, and explain it. I have run into a few people who do not use filters!
What is MDS?
MDS is when your bone marrow is failing to do its job correctly. In my case, my bone marrow doesn't produce enough red cells to provide energy or enough white cells to fight infection. In some people, their platelets do not work correctly, so the blood does not clot.
Better use your brain filter!
"You must not have cancer very bad because you don't look sick." So you want me to look as bad as I feel? Make-up and hair dye help.
It is always lovely to hear, "You're looking good!" Then STOP! No need to add, "You look better than the last time I saw you. You're not as pale." Really?
"Will you lose your hair when you have chemo? That's too bad because your hair is your best feature." It would be bad to lose my life. Hair will eventually grow back.
"Oh, I'm sure you will be okay!" People don't die of cancer the way they used to." That's not a helpful thing to say, especially when you don't know what kind of cancer I have!
"You could go on that special diet that keeps the cancer cells from growing." Doctors always recommend a healthy diet, but there is no quick fix for MDS.
"Do you still have that cancer?" Yes, because it is not a cold that you get over quickly.
"Think only positive thoughts. Forget about having cancer!" Doctor appointments and blood work make it difficult to forget that I have cancer.
"Your life expectancy is seven years? Well, seven years is a long time. No one knows how long they have to live. You could get hit by a truck tomorrow." That doesn't make me feel any better.
Helpful advice
"Pray for understanding, peace, and purpose." That's the best advice I have received, which led me to Blood-Cancer.com!
When you have a rare disease, you face two challenges: the illness and the other living in a world where people don't understand. Be kind to one another.
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