[personal|cancer] Why I write about cancer so much

Recently, in various online venues, I have been characterized both as oversharing and as being overly dramatic with respect to my cancer blogging. (No links, I don’t want to embarrass anyone.) Beyond the cancer, I’m pretty sure I don’t overshare otherwise, unless you happen to find my political opinions inappropriately strong or ill-expressed. If that is the case, I invite you not to read them. (I do [tag] my post titles for a reason.)

I have a very specific purpose in talking about cancer as openly and plainly as I do. That is to be as honest as possible about the long-term journey of being a cancer patient, without sparing any of the details. That includes the deeply personal, the downright embarrassing, the silly, and the icky. Stuff that’s particularly TMI I try to remember to put under a cut so that, for example, my digestive and sexual dysfunctions don’t just spill across people’s desktops.

But guess what? Depression, fear, anger, terrible bowel problems and all the rest are part of cancer and its treatments. More to the point, they’re a part of cancer a lot of people are very uncomfortable talking about. Including, in my experience, clinical practitioners in the field. For example, to date, four and half years in, I’ve met exactly one oncology professional who was prepared to have a frank and honest conversation about sexuality with me. That’s after seeing eight different oncologists and about as many oncology nurse practitioners so far.

So in addition to the clinical stuff, I talk about the icky stuff. About the wretched cramps and the violent bowel movements and inability to reach or maintain an erection. Just like I talk about the depression and the fear and the social attenuation. Because this is what happens when you struggle with cancer over time. I put out a lot of clinical information about myself as well, mostly as a reference point and to provide context.

Who am I trying to reach with all this?

  • Anyone who has cancer.
  • Anyone who knows or loves someone with cancer.
  • Anyone caring for someone with cancer.
  • Anyone treating someone with cancer in any clinical capacity.
  • Anyone writing about cancer (fiction or non-fiction).

For some readers, this is oversharing. Well, ok. Read my writing posts and skip past my cancer posts if that’s better for you. Don’t take this the wrong way, but I don’t care what you think about these cancer posts. Those posts on this blog are first and foremost for me, and as a close second, for the people who can benefit from them. Talking about my experience in exhaustive detail helps me cope. It also offers insight to people who sometimes desperately need that insight, or the words that come with that needed insight. This isn’t my ego or my imagination talking, I know from the sometimes wrenching e-mails that I receive how much these words help some folks.

Is it well-socialized or polite to talk about this stuff? Hell no. Can it even be triggery for some people? Hell yes. But cancer isn’t well-socialized or polite, and doesn’t care if it’s triggery. One of the very few positive things I can wring out of this miserable experience is using my skill at words to characterize the situation so that others can better understand. Oversharing, yeah sure. But it beats the hell out of shamed silence.

Welcome to cancer, one of the uglier corners of life.

As for being overly dramatic, see above. I’m talking about my experience. Sometimes my experience is dramatic — not in the sense of me being a drama queen and pitching a fit in a passive-aggressive bid for support, but in the sense of fearing for my life in a literal and immediate way. To the extent that I can do so while trapped inside, I document my emotional experiences as well and carefully as I document my medical experiences. Cancer isn’t Interesting Soap Opera disease where one becomes artfully pale and acquires special dying person wisdom to dispense to one’s family and friends before passing gracefully. Cancer is dirty and messy and ugly and crazy-making, a thief of body and soul. I talk about my sense of alarm just like I talk about my moments of acceptance.

It’s my experience, damn it.

Besides which, cancer isn’t trivial. It’s the second leading cause of death in the United States (after heart disease), and something between a third and a half of people who are diagnosed with cancer every year will die of it as a result. It’s not dramatic to be freaked out about having cancer, it’s normal.

So follow along or not as it pleases you. I’ll think no more or less of you either way. But grant me the integrity of my own experience and my right to document it regardless of your approval.

26 thoughts on “[personal|cancer] Why I write about cancer so much

  1. Jennifer Hill says:

    Amen!

  2. Paul says:

    “characterized both as oversharing and as being overly dramatic with respect to my cancer blogging.”

    Dude, I can’t imagine anyone saying this or criticizing you about it. Doesn’t make sense to me.

    I mean, this blog is about you, and really, cancer is a huge part of your life right now.

    So yeah, Amen to this ” But grant me the integrity of my own experience and my right to document it regardless of your approval.”

    Paul

    1. barbarienne says:

      Right with you, Paul. I was like, “People say this shit to him?” What assholes.

  3. pelican says:

    “Cancer isn’t Interesting Soap Opera disease where one becomes artfully pale and acquires special dying person wisdom to dispense to one’s family and friends before passing gracefully.”

    Yes, this.

    It is a terrible thing that this our cultural expectation for dying. So false and isolating.

    I really appreciate both your willingness to share the ugliness of this illness and the moments of grace you do find. Thank you.

    1. Yes, this, a thousand times this. I have been watching another fairly public figure dealing with her own second bout with breast cancer, and I could not put my finger on what was bothering me about her posts, but you hit the nail on the head. Cancer is ugly and it blows. (And, at least in my case, it gave me the shits.) Thank you for being brutally honest about this journey.

  4. Suzan Harden says:

    Jay, please, for the love of Murphy, do not stop talking about your experience! You are NOT oversharing; you’re being factual. For folks facing cancer, they need facts. They need understanding. Telling you that you’re being a drama queen? How many of these idiots have been in a chemo treatment center? The people that wrote or say that crap to you, chickenshits, all of them! You’re a class act, Jay, talking about an ugly disease. Keep up the fight!

    1. Jay says:

      Oh, no, I’m not shutting up. This is too important. But thank you.

  5. ladydrakaina says:

    Thank you for these posts, I appreciate them as someone who loved someone with colon cancer. My grandfather chose not to discuss clinical and emotional details with his teenage grandchildren 12 years ago, and reading these posts helps me to gain some perspective on the realities of this disease, reading about your experience helps transform it into devil you know for me instead of a completely mysterious evil that stole my grandpa.

    1. Jay says:

      I am glad to have been able to help.

  6. Rachel Sinclair says:

    As a fellow cancer patient experiencing many of the same issues, I fnd it a relief to see someone speaking openly about the unpleasantness of cancer treatment. It makes me feel less alone in my suffering.

    Let those who are offended or embarrassed not read your cancer posts. Those who are afraid should read. Cancer is scary, but you should know what it is that you fear.

  7. Karen says:

    From someone in remission -thank you for this blog. Cancer is nasty, unpleasant, dirty and downright revolting and it attacks your very soul. It never leaves you, no matter how positive your prognosis – I am changed forever.

  8. Haters going to hate. I’m kind of sick of people complaining about what others choose to write about. They like to be the cool kids, building themselves up by putting others down. I’m not fond of lots of blogs and many topics, and I have a solution. Don’t like it? Read something else! Complaining just makes you an asshole.

  9. Cora says:

    Thankfully, I don’t have cancer, but I’ve known several people with cancer in my extended family and among friends and acquaintances (some of them made it, some didn’t). And personally, I think it’s great that someone is willing to be open about what cancer entails, because there is still too much taboo around debilitating diseases of any kind. And IMo it’s important that someone speaks out, both for the sake of others with the disease or their loved ones. Can’t imagine why anyone would think you overly dramatic for talking about your illness, unless there is some kind of “Don’t talk about deadly diseases except in upbeat, religiously euphemistic terms” taboo in the US.

    Besides, it is your personal blog and you’re free to blog about whatever you want, just as every else is free not to read it. Which is okay – I guess I blog about plenty of things other people don’t want to read about (German politics anyone?), too.

    Besides, plenty of people do follow the cancer posts because they’re worried about you. For example, my Mom has never read a single of your books (trying to get her interested in Steampunk, but I’m going via Meljean Brook and Gail Carriger first) and she only knows you as “that writer guy Cora knows from the internet who had cancer”. Nonetheless, she’s asked about you and was happy for you when the latest scan didn’t reveal anything bad.

    1. Jay says:

      BTW, thank your Mom for me. I do appreciate your concern.

      (And actually, I do read your posts on German politics…)

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