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Lakeshore
An author of no particular popularity

Jay Lake
Date: 2012-11-26 05:36
Subject: [personal|cancer] Why I write about cancer so much
Security: Public
Tags:cancer, health, personal
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.

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User: cypherindigo
Date: 2012-11-26 13:47 (UTC)
Subject: (no subject)
Jay,

I appreciate these posts more than I can express. My sister has just been diagnosed with Hodgkins Lymphoma, and they are helping me prepare to be one of her caregivers over the next months.

Thank you for posting them.

Mary/Cypherindigo
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makoiyi
User: makoiyi
Date: 2012-11-26 14:07 (UTC)
Subject: (no subject)
It's a very sad world where people feel the need to express their complaint over *your* blog. Especially when it does such a valuable service. Definitely a case of move along, nothing to see here, if you have no wish to. I've tried to do a similar thing over grief in my way, but really people, you don't have to read if it makes you uncomfortable.
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ulfhirtha
User: ulfhirtha
Date: 2012-11-26 13:58 (UTC)
Subject: (no subject)
I appreciate them as well- it has certainly better helped me with understanding some of the members of my own family who have been grappling with this but aren't nearly so forthcoming.

Furthermore is the obvious: this IS *your* journal after all. Put in it what you please.
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fledgist
User: fledgist
Date: 2012-11-26 14:03 (UTC)
Subject: (no subject)
I truly appreciate everything you've written on the subject, having had my own critical health issues. Unfortunately, those continue.

Also, a very dear friend was diagnosed with breast cancer this year and had to undergo radical mastectomy and chemotherapy. She's bearing up very well so far.
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Jay Lake: sanguine-superb_fairy_wren
User: jaylake
Date: 2012-11-26 18:04 (UTC)
Subject: (no subject)
Keyword:sanguine-superb_fairy_wren
Good luck and good health to her. And per your comment a day or two ago, I am also glad we had the chance to meet in person.
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Rovanda
User: rovanda
Date: 2012-11-26 14:13 (UTC)
Subject: (no subject)
I've always appreciated how honestly you share your experience. I've also found your title tags to be an easy way to moderate what I read according to what I feel up to sharing of your experience.

Thank you.
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Angie: New Me
User: aiela
Date: 2012-11-26 14:22 (UTC)
Subject: (no subject)
Keyword:New Me
Actually, your openness and honesty about your cancer and treatment have provided a good counterpoint to my sister's cancer and treatment, since my sister has taken the stance that she was supposed to be dead by now, so every day is a gift and she's not going to look too far into the future other than whatever her next treatment is. She doesn't talk about her mortality because she has come to terms with the fact that she's "not even supposed to be here right now" and she's pretty much put herself in her doctors' hands and has washed her hands of worrying about it.

I couldn't face it the way she does, but it's what gets her out of bed in the morning and I'll take it. But it is good to see things from your perspective because you're talking about the things she isn't, and while no two cancer experiences are the same, it gives me a window into the other side.
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Jay Lake: signs-never_give_up
User: jaylake
Date: 2012-11-26 18:06 (UTC)
Subject: (no subject)
Keyword:signs-never_give_up
Honestly, down under the hood, I feel pretty much the way she does. Without very modern medicine (the past decade or so of treatment advances), I would have been dead already. At this point, I am only one step away from the leading edge for non-experimental treatment. I expect to cross that boundary sometime in the next two years myself.

Clearly your sister processes and acts on that feeling much differently than I do. I'm glad it gets her out of bed in the morning, because by gummy, something has to.
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Shefa: patronus
User: shefa
Date: 2012-11-26 14:26 (UTC)
Subject: (no subject)
Keyword:patronus
I value your willingness to share the most raw of experiences with the rest of us. If anything, I find your descriptions not 'dramatic' at all -- not in the sense of 'looking to heighten drama.' You're describing what is in the clearest, most emotionally honest way possible. It's real. I'm glad it helps you. I know it helps others (me, included, in the role of family member and in the role of therapist).

People often are willing to talk about the mechanics of an illness, but not the emotional and physical sequelae that are far messier. Talking about (and hearing about) the messy parts help.

I'm going to refrain from interpreting the reactions of the unnamed others to your openness... ;)
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Jay Lake: signs-cemetery_recycling-center
User: jaylake
Date: 2012-11-26 18:07 (UTC)
Subject: (no subject)
Keyword:signs-cemetery_recycling-center
I am glad it helps. And also, thank you for your various private communications.
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ДРУКТОР (I CAN SEE DEAD PEOPLE. I SEE THINGS)
User: farwideserenity
Date: 2012-11-26 14:30 (UTC)
Subject: (no subject)
Dear Jay,

You're doing everything right. You have my admiration.
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cathshaffer
User: cathshaffer
Date: 2012-11-26 14:39 (UTC)
Subject: (no subject)
Fifty years ago, if you got a cancer diagnosis, you knew it was pretty much the end. Put your affairs in order, you are dying soon. Medical science has produced effective treatments that can prolong life significantly, and even cure the disease in some cases. Although on the face of it, that's a great thing, what has resulted is a uniquely tortuous liminal journal between terminality and life, one for which humans are in no way emotionally equipped. Are you equipped for a terminal diagnosis. By the grace of god, yes, you are. Are you equipped to spend five or ten years or your life *not knowing* at any given time whether you might be terminal? Absolutely not. Even the cure rates are cruel. In most cancers, it's a minority who are cured, and even the most dire-seeming cases have their rare cures. Is that a good thing? For the person getting cured, absolutely. For all of the rest of patients, who have been thrust into a Las Vegas slot machine situation, stuffing quarters in to save their lives, it becomes the highest stakes gamble of their entire lives.

If someone thinks you're being over dramatic, or over sharing, they better PRAY TO THE FUCKING ALMIGHTY
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cathshaffer
User: cathshaffer
Date: 2012-11-26 14:40 (UTC)
Subject: (no subject)
...that they never find out for themselves.

(accidental premature posting)
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(no subject) - (Anonymous)
Jay Lake: signs-too_nervous
User: jaylake
Date: 2012-11-26 18:08 (UTC)
Subject: (no subject)
Keyword:signs-too_nervous
I want to bear witness. So keep going.

Thank you. I shall, to the best of my ability.
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(no subject) - (Anonymous)
Jay Lake: cancer-hereafter_is_closed
User: jaylake
Date: 2012-11-26 18:10 (UTC)
Subject: (no subject)
Keyword:cancer-hereafter_is_closed
Your mom was so right. I'm glad she could talk to you about it, at least.

One of the reasons I so value my friendship with mikigarrison is she has always been the most absolutely consistent of my friends and loved ones about being willing to hear the dreadful stuff with flinching.

Though in truth, almost everyone in my life these days is somewhere between pretty good and excellent about it.
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Keikaimalu
User: keikaimalu
Date: 2012-11-26 15:01 (UTC)
Subject: (no subject)
When someone is going through something as wretched and all-consuming as cancer and its treatments, not to mention mortality, I say more power to them if they find a way to help themselves cope, so long as they aren't damaging other people in the process. So until you employ a Clockwork Orange–style device to hold someone's head still and their eyes open while looking at something they desperately don't want to, you go, boy.

Anyway, in my experience, major illness makes drama queens of us all. To insist on silent fortitude for the convenience of those around us is to put the preferences of the healthy over the needs of the ill. When you become seriously ill, you meet a side of yourself you have never met before.

Strange as it sounds, I've appreciated specifically the gory medical details of your treatments. I've never had chemo (and hope I never will), but hearing about the experience from someone in the trenches is illuminating in a way those sterile, sanitized hospital brochures never will be.
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User: joycemocha
Date: 2012-11-26 15:29 (UTC)
Subject: (no subject)
Having had too damn much experience with cancer around me (and, statistically, given my family history, likely to be staring down its barrel at some point myself), I thoroughly appreciate your cancer posts.

People who don't like 'em don't have to read 'em.
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A wandering fellow on the long road
User: tsarina
Date: 2012-11-26 15:56 (UTC)
Subject: (no subject)
Goddamn. It's your blog. I've never liked the idea that anyone gets to say you're too much of anything when you're writing a blog. It's your life. It's your illness. I sort of want to just slap my keyboard in irritation or shout "fuck off" loudly. Life is scary enough some days without having something actively trying to kill you from the inside. I think you're allowed a little dramatic license for the love of all that's good.

Your posts have made me reconsider a lot of my grandfather's final years, as he dealt with a variety of cancers. A friend of mine is about to start chemo. Between your posts here and Xeni Jardin from BoingBoing, I have learned so much more than perhaps I ever wanted to know. But damn, this is something to know.
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Jay Lake
User: jaylake
Date: 2012-11-26 16:32 (UTC)
Subject: (no subject)
I have learned so much more than perhaps I ever wanted to know. But damn, this is something to know.

Yep. This. Sometimes I think of my life over the past almost-five years as a process of becoming an expert in a number of things no one should ever have to become an expert in...
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Mhari Lindhaven
User: mhari_lindhaven
Date: 2012-11-26 18:11 (UTC)
Subject: (no subject)
Like they said, if they don't like it, they don't have to read them. I find your posts enlightening, and in some small way it feels like I'm sharing a tiny portion of your load when you talk about what's going on.
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Julie, JulieInTheGreen, "Squire!": Not Alone
User: brickhousewench
Date: 2012-11-26 18:22 (UTC)
Subject: (no subject)
Keyword:Not Alone
Long time lurker, first time commenter. I've been reading you on my friends-of-friends page for years now. But whomever is our mutual friend is, they have clearly abandoned Live Journal, because the FoF algorhythm wasn't putting you in my feed anymore. And that worried me. Because I'd been following along on your cancer posts, and I hoped that didn't mean that your health had taken a turn for the worst. Every now and then I'd check in, just to make sure you were OK.

I friended you last week because I enjoy your Zen photos and your link salads. And also so that I could continue to follow your cancer posts. So you've got at least ONE person who keeps reading you because you DO post about your treatments. I've got late blooming cancers up both sides of the family tree, so the numbers are against me avoiding the big C entirely. I'd rather know what I'm in for now, because neither my mother nor my father care to talk too much about theirs (breast, prostate).
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Jay Lake: graffiti-panda
User: jaylake
Date: 2012-11-26 18:30 (UTC)
Subject: (no subject)
Keyword:graffiti-panda
It really is the not knowing that is killer. Good luck to you. And thank you for following me.
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