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What NOT to Say to Someone with Bladder Cancer!

Over the last three years, I think I have heard every kind of reaction to my “I have terminal bladder cancer.” Let’s face it, people are idiots who don’t always use their brains before they open their mouths. I am going to try and list all the things that you shouldn’t say to someone with bladder cancer and hopefully help some people who have the “foot in their mouth” syndrome.

“Don’t you look well?”

Yes, you may look well, but underneath the makeup and the false smile (and that’s just the men – hahaha), you feel like utter rubbish; your body is fighting its biggest battle with this evil invader. I am sure it took a lot of strength to go out and mix with the world, and being told you look “good” isn’t helpful in the slightest. Perhaps if you do find those words coming out of your mouth, you could quickly follow them up with “But I bet you don’t feel that good on the inside, do you?”

“That’s the best cancer to have.”

“Ohhhh, I have heard that’s the best cancer to have.” If you find these words coming out of your mouth, then please slap yourself VERY HARD! What a ridiculous statement! Bladder Cancer is Cancer, Breast Cancer is Cancer, Cancer is Cancer, there is no “best” Cancer to have. I feel that belittles everything you are going through or going to go through. Point out to them that yes, sometimes, the treatment for bladder cancer is different than other cancers; however, more often than not, there are higher recurrences with bladder cancer which may require chemotherapy drugs into the bladder directly.

“My friend’s friend had that, and he is absolutely fine now.”

Okay, so if someone says this to you, you have my permission to throw a custard pie in their face! I don’t care who their friend of a friend is, and I don’t care that they were or are fine; this isn’t about them! This is my journey, and everyone’s journey is different because we all respond differently to treatment. No one has exactly the same journey. Yes, they were trying to say something to give you hope; it’s only human nature to try and make things better, but it’s still invalidating.

“Stay positive.”

This one really grates on me. I find it one of the most insulting things to say to someone with terminal cancer and cancer. Really? If you thought you were going to die in 6-12 months, would you be positive? NO! No, you wouldn’t, so why on earth do you think it is acceptable to say it? Are you positive the WHOLE time in your life? No, no you aren’t, so don’t say it to someone with bladder cancer.

“Have you lost your hair yet?”

This is not acceptable because you will be able to see if and when we lose our hair. How would you like it if we said something very personal about you? Some people are very sensitive about losing their hair, and for women, it seems to signify losing, what they perceive to be, their femininity.

“Have you lost or gained weight?”

“Ohhh, haven’t you lost/put on weight?” You wouldn’t say this to a person normally, or if you did, you would be considered very rude so why do you think you can say it to someone with cancer? If they have lost weight, they will be fully aware, the same as if they have put on weight. DON’T mention it unless you want a custard pie in the face.

“Is it contagious?”

“Is it catching?” I know, I still can’t believe that there are people out there who think cancer is contagious! Let’s get this corrected, shall we? Once and for all. CANCER IS NOT CONTAGIOUS!

“You are so brave.”

No, no I am not. I am doing what I have to do to survive this awful disease.

“You are going to beat this.”

Wow, when people say this, I want to scream at them, “YOU DON’T KNOW THAT.” I got really fed up of the amount times I heard this. I do get it, I do realize that you saying those words are more for you than for me. So I smile, because that’s how you are going to cope on my journey and we both know that neither of us is a fortune teller.

“Hello, how are you?”

Let’s be honest, you don’t really want to know that I feel like poop. I have been up all night puking and have the constant urge to pee, or that I feel so miserable I just want to cry.

FYI: Please don’t send links to your friends for “miraculous holy water/miracle fruit/magic stone/special diets/special juices/monkey paw” that claim to cure their cancer. Again, not helpful in the slightest.

What you CAN say

“I am so sorry. I don’t know what to say.” Be honest with us. I don’t think I would know what to say either.

“I am so sorry you have got cancer.” Be sincere.

“How are you feeling today?” If you say this, then please really want to know what the answer is, as there is nothing worse than us thinking you really want to know and then having to watch your eyes glaze over or you making a quick excuse to get away.

I also found that I had a lot of people offering to do things for me or asking if they could do things and me being me, being polite and nice would say “no, thank you” when actually, sometimes, I did want someone to take over and do the vacuuming but my pride wouldn’t let me say so.

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Comments

  • RunnerPDX
    4 weeks ago

    Anita,
    Wow. Excellent. Just excellent all the way around. Especially when someone says “you look so good.” I laughed out loud when I read your piece. (I can’t tell you how many times I have heard that ) I’ve read most of your articles and am both really sorry to see what you’ve been through, and learned from what you said. I will say that you are a gem. You articulated several different things that all irked me. And yet, I laughed when I read them and realized I am not alone in my sensitivity. So, thank you, and know that you are not alone either.

  • counselingyogi
    2 months ago

    When something as ridiculous as “that’s a good cancer to have” is said. It’s up to us to educate folks in the moment, kindly but firmly. People respond to the very direct “that’s not helpful to me right now as I’m in the middle of treatment and it sucks” Teach them how to just be present. That that’s “enough”. They don’t need to say “the right thing”. The tyranny of always being positive is exhausting. Sometimes you just need to lean into the darkness. The important thing is that you don’t pack your bags and move in there indefinitely.

  • Anita Brown moderator author
    4 weeks ago

    RunnerPDX, thank you for your kind words, we are all in this together aren’t we? And thank you for reading the stuff I write… and as you have put.. it makes you realise that you aren’t alone in how you think or feel and it’s nice for me to know that I’m not on my own either, so thank you ❤️

  • Anita Brown moderator author
    2 months ago

    I totally agree with you counselingyogi, however, my experience, after 3 years of ‘educating’ people, including GP’s, Doctors and Consultants, as well as friends and family, it does wear you down. You get “tired’ of the constant explaining and fighting to be heard and listened to. As you say being positive is exhausting, I am taking time out for me right now. Time to soothe my worries, mend myself and I WILL come back stronger. Time heals xx

  • gailvin
    2 months ago

    I have always felt that people mean well even if what they say is not what we want to hear.
    People have a difficult time addressing someone whether it is family or friend when they learn of the cancer diagnosis. Just being kind enough to say something meant in a simple enough way is good enough for me.

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