After being treated for nasopharyngeal carcinoma (a rare type of throat cancer) in 1985 and salivary gland cancer in 2016, speaking has
become a real challenge for me. I can still talk, but sometimes my
speech is hard for others to understand.
Because of this, sometimes people try to help me in ways that aren’t
really useful. So here are some “dos” and “don’ts” for how to be an
ally to a cancer patient (or anyone else) with speech challenges.
Don’t treat me differently
When the wait staff tried to serve me at a recent Christmas dinner,
one woman at my table kept saying, “She’s not eating.” When I was
offered tea, she added, loudly, “She’s not drinking, either.”
That lady probably thought she was doing me a favor. But it didn’t
feel that way. I might not be able to speak as clearly as I’d like to
anymore, but my mind still works just fine, and I am quite capable of
communicating in other ways. I wish she would have trusted me to speak
At a restaurant or party, I can either say or write, “No, thank
you,” when I’m offered food. Or even joke, “I’m on a diet.” Strangers
don’t have to know all the gory details. Sometimes, when I go out to
eat, I’ll say yes when a waiter offers me water or tea, and then just
not drink it. That way, I’m not drawing undue attention to myself.
Don’t confuse me with my limitations
After surgery, my speech became much more limited, so people often
don’t understand me. I frequently find myself writing down what I want
But I still have a voice in my own way, and I prefer that people not
make a big deal about it. I just want to be treated as if I’m normal.
Because I am normal.
Don’t make jokes
Everyone knows that kids can be cruel, but it still hurt when I was
a senior in high school and had radiation markings on my face from treatment. I got teased that I was still in my
Halloween costume, which was very painful. It’s easy to poke fun at
people when you don’t know their stories. But everyone is fighting
some battle you’re unaware of, so be kind. It’s never OK to make fun
of someone’s appearance, mannerisms or anything else they can’t help.
Sometimes a friend — or even my husband — will still make a joke
about my speech, not realizing what they’ve done. Usually, I bring it
to their attention, but that can be exhausting, so other times I just
let it go, or walk away and cry. Mostly, I’ve learned to avoid people
who are consistently thoughtless or disrespectful.
Look at me while I’m speaking
Even if you can’t read lips, when you look at a person who’s
speaking to you, it’s easier to understand what they’re saying. So, I
wait for someone to focus on me before I start talking.
This can be a challenge in the age of devices, when everyone’s
looking at their phone or tablet, but it does help.
I know some days my voice can sound more “nasal” than others. And
the back of my tongue no longer works right, so it might take me a few
minutes to get my words out completely.
But please be patient. And if you can’t understand me, just say,
“I’m sorry, I can’t understand you today.” Or ask me to repeat what
I’ve said or write it down. Many people just agree with me, when they
have no clue what I just said. Then 15 minutes later, they’ll suggest
the same thing I just did.
Be patient with yourself, too. Because I know it’s as hard on my
friends and family members as it is for me. Here, I’ve talked normally
for 49 years, and now, it’s a challenge to understand me. But I’m
trying, and I really hope you will, too.
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