Ragged Clown

It's just a shadow you're seeing that he's chasing…


Sep
22
2022

Carcinomies and Cancer Muggles

Crossing into the world of cancer, I discovered a world that I only saw dimly before, despite running an online community for cancer patients for the last ten years.

Shaun was one of our first members and inspires so many.

I hang out with a bunch of cancer people on Twitter. They refer to themselves as carcinomies and everyone else as cancer muggles — people who barely understand this other world. Carcinomies deal with their cancer with a dark humour that would shock the muggles.

So many of the platitudes that seemed meaningful before seem empty now. I don’t need to have hope. I am not a warrior or a hero. Things won’t work out. I won’t get better, no matter how hard I try or how much I have a positive attitude. I did not get cancer because of my dietary habits or my poor choices in life. My tumour is not an invader from the outside — it’s a part of my body that has gone wrong.

The appropriate metaphor for dealing with cancer is that the patient needs care, not to fight a battle.

Carcinomies talk about toxic positivity.

“You can do this.”
“Everything will be alright.”

I can’t and it won’t. I find it more helpful to have a realistic understanding of what is ahead so that I can make decisions than to simply pretend that everything will be OK.

What if I don’t feel positive or ambitious? Am I doing it wrong?

Even so, I always appreciate attempts to make me feel better, even if they don’t hit the mark exactly. I always mentally translate attempts at kindness, however misguided, into “I’m not very good with words. I just want the best for you” and accept them for their intention, not their literal meaning. I know that people mean well because I did too before I entered this world.

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13 responses to Carcinomies and Cancer Muggles

Claire ATX September 22, 2022

Well put…

Helen September 22, 2022

I like this. I always find it strange that cancer is singled out as the disease that needs fighting. Did the people who didn’t make it not fight hard enough? Were they not brave enough? And while we’re on the subject, I don’t like the way that cancer is personified, as if it has a mind or will of its own 🙁

    Ragged Clown September 22, 2022

    Right. I think the idea that cancer is “an external invader” rather than “a bit of your body that went wrong” distorts the way people think about it.

Diana September 22, 2022

Yes, Ragged…Your message presented a kind and understanding point of view when you say you interpret the presentation of platitudes coming from someone who perhaps doesn’t understand to be a well-intentioned way of saying they don’t know what to say or how to say it correctly, but just want the best for you.

Thank you for sharing such a gracious way of dealing with such clumsy attempts.

    Ragged Clown September 22, 2022

    I’m new here, Diana, but I already see how different this world is.

Janet September 22, 2022

I am still a cancer muggle, thanks to the cosmos for the time being. Everything I used to know about cancer came from my breast cancer survivor cousin who headed up a big city chapter of Susan B. Komen. Rah! Rah! Rah! Fight! Fight! Win! Ring the Bell! Wear a pink boa and parade down Main Street! All of that went out the window when my mother was diagnosed with ovarian cancer. I hadn’t heard the phrase “toxic positivity” until today, but my mom was sensitive to it to an extreme. She was barely able to be gracious about it occasionally, really appreciated people who would either “be real” with her or simply not mention her cancer and talk about the weather. Thanks for this post. The biggest thing I learned from my mom’s ordeal was that illness and death are experienced uniquely and privately by each individual, no matter how many loving and supportive and well-meaning and encouraging people and organizations are there. The rest of us have no business telling sick or dying people how they should think about it or approach it. It takes all kinds in this world! (My dear, genteel mother: “If one more person asks me to talk about my ‘journey,’ I’ll send THEM on a journey they’ll never forget.” I told her it might be hard to believe but some people liked to talk about their journey!) I try to follow others’ lead but am sure I miss the mark more often than not.

    Ragged Clown September 22, 2022

    I enjoy talking about my journey (I prefer ‘adventure’) but I know that many people do not. It’s important to understand what people prefer before jumping in with anecdotes.

John September 22, 2022

Ohh bollocks Kevin, I have Multiple myeloma, I am fully aware of how buggered up I am.
Like yourself getting cancer was low on my radar, I don’t know or care how I got, but it’s there and there is nothing I can do about it.
I do not worry about it until I am in pain or can’t breath, or have to be rushed to hospital.
everyone says I am tough I will cope, yes I am tough and I will cope, however it is very testing.
Today I saw a young woman in a weakened state, head bandaged hobbling with a tripod going to the toilet, I also saw a man who looked emaciated, you think these people are so desperately Ill , why put themselves through so much torment ?
I wonder if they look at me in the same vein.

I think like yourself I am a sociable person, and I don’t want people to treat me as if I were dying and I don’t want lip service of false hope.
Whilst I am alive I want to live.
I am not like you, you are inspirational, you have done so much for so many people on smart-patients,, your life has been filled with adventure, I don’t always agree with you but your ideas and conversation has been thought provoking .

President Biden has a cartoon in his office of Hagar being struck by lightning, Hagar shouts, Why me God?

God shouts, Hagar why not you?

It was president Biden thoughts on his wife and daughter dying in a car accident, and his son dying of cancer.

We must bear in mind that it was not president Biden who died but his family, that pain of loss will live with him forever.

I think we owe it to our loved ones to do the best we can, your absolutely right, whatever we do may have very little effect, nevertheless we must use every tool at our disposal to make our journey bearable.

Our wonderful Queen was a great inspiration, I never met her, and when she passed a part of me died, I think King Charles will be equally wonderful , his level of commitment and responsibility will be a heavy burden, however it is what he was born to do.

I often wonder what was I born to do? my simple answer is I was born to do the best I can.

You have done well Kevin, and it is a privilege to be able to converse with you through the opportunities you have offered us for discussion .
Please do not become too despondent, you don’t have to be a king or a Queen.
like me you you are an normal person, you do make the world a better place.

I am not saying this to make you feel better, I am saying this because it’s in you and what you do, you deserve recognition.

Johnboy France

    Ragged Clown September 22, 2022

    Thank you for your kind words, Johnboy.

    I am actually not despondent at all. I have moments when I wonder at the dark clouds over my head but most of the time, I am as cheery as I have always been.

    I like people and I enjoy being with them.

Jeffrey Fredrick September 22, 2022

I want the best for you.

Dianne Pagani September 22, 2022

Well I just want to say I love you and will always cherish the time we spent all together when you guys lived in NY. Xoxo

    Ragged Clown September 22, 2022

    Thank you, Di!

    We talk about it often and we still enjoy the Electric Slide (boogie woogie woogie woogie).

Robin Martinez September 22, 2022

Kevin, I agree about toxic positivity; yet I have a different take on “Everything will be all right.”

It will, because dying is all right.

Dying peacefully is better.

Dying well is better still.

You have the attitude and are in the position to do all three, and you will. Stay as long as you are happy, and go when it is time. It’s all right to let go.

We will miss you, we will grieve you, we will remember you with smiles eventually; and we (at least some of us) will know it is all right.

Love to all.

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