So here it is. The manual I never wrote. The words I never said

Posted by hans_casteels @hanscasteels, 3 days ago

The Things I Should’ve Said: A Treatise for the Next Unlucky Bastards (and Those Who Love Them)

I’m never going to die. Obviously, immortality suits me — I have far too many sarcastic remarks left unspoken and bureaucracies left to dismantle. But just in case the universe has other plans (or the cancer, cardiac history, or sheer cosmic boredom intervene), here are a few things I wish I’d said. I meant to. I really did. But I was busy fending off medical side effects, explaining to people why “positive margins” is not a good thing, and trying to remember which specialist I was supposed to lie to this week about how much wine I drink. So consider this the fine print of my non-obituary: I lived, I griped, I laughed at death. And if I'm wrong , well, I’ll haunt you with passive-aggressive post-its and unsolicited medical advice.

I should’ve said something.

I should’ve opened my mouth—back when it still spoke with testosterone and not the soft, estrogen-laced whispers of a man chemically castrated by the wonders of modern science. But I didn’t. Not because I didn’t want to. Not because I didn’t care. But because, frankly, I was busy peeing for the fifth time that hour, trying to remember the name of my dog, and quietly contemplating if I could weaponize my hot flashes against raccoons in the yard.

So now, dear reader and future inductee into the Brotherhood of the Burnt and Brachy'd, let me rectify my silence. Here are fifteen things I should’ve said but didn’t—likely because I was trying not to fart during a consult.

First, don’t let the cheery pamphlets fool you. “Localized,” they say, as if your prostate set up a charming Airbnb and hasn’t already tried to invade the lymph nodes next door. Cancer is never “just there.” It’s a squatter with a lawyer, and it’s already redecorating.

Second, androgen deprivation therapy will turn you into a moody Victorian governess. You'll find yourself weeping at dog food commercials and fantasizing about punching squirrels. You will become acquainted with the term “emotional lability.” You will redefine it.

Third, those nutritionists telling you to eat kale? They mean well. But you’re not a goat. And kale will not save you. Neither will turmeric, flaxseed, or that smug guy on YouTube who bathes in celery juice and believes prostate cancer is caused by negative thoughts about your father.

Fourth, get a second opinion. Always. Especially if the first opinion comes with a suspiciously glossy brochure and a “treatment package.” You're not buying a cruise.

Fifth, remember this: the moment someone says “this type of cancer grows slowly,” they are laying the groundwork for medical inertia. Insist. Demand. Be the patient they warn interns about.

Sixth, track your PSA like it’s a stock ticker in a recession. If it spikes, don’t be reassured with “Let’s wait a few months and see.” That’s how it ends up on your spine.

Seventh, radiation is the gift that keeps on giving. Not immediately. At first you’ll think, “This isn’t bad at all.” And then one day, you're squinting at a bathroom wall, wondering if what just exited your body was in fact a metaphor for your soul leaving.

Eighth, no one talks about the loneliness. Not the emotional kind—though yes, there's that—but the clinical solitude. You’ll be alone in a room with a machine that makes the Death Star look warm and fuzzy. Your team? Behind ten feet of lead.

Ninth, your libido will vanish. You won’t miss it—at first. You’ll say “I’m focused on survival.” But one day, you’ll watch a documentary on how pandas mate, and weep. For both of you.

Tenth, trust your instincts. If something feels off, it probably is. You’ll learn more from the exhausted radiology tech’s eye twitch than from three urologists and a PowerPoint.

Eleventh, your body becomes a science project. Everyone’s got a theory, a protocol, an algorithm. You’ll be treated like a spreadsheet, unless you claw back your humanity with dark humor and very pointed sarcasm.

Twelfth, ask the hard question: What’s the endgame? Not “cure.” Not “maintenance.” But what will this look like when I’m 75 and leaking into a pad the size of a small pillow?

Thirteenth, dignity is a myth sold to the healthy. Let go of it. Laugh when you can't pee in the cup. Laugh harder when you forget why you're at the clinic and someone gently reminds you it's Thursday.

Fourteenth, you’ll get advice. From strangers. From cab drivers. From men who swear apricot pits cured them. Smile, nod, then go scream into a towel.

Fifteenth—and here’s the kicker—I should’ve told you: you’re allowed to be angry. Furious. At the randomness, at the treatments, at your own failing gland. But you are not allowed to give up. Not because of hope or optimism or some stupid inspirational quote. But because quitting is for insurance companies and HMOs. You, my friend, are now in the underground. We fight smart. We fight dirty. And we write angry essays about it all.

And now, for the civilians. The partners, friends, and well-meaning loved ones who bring green tea and quietly cry in the kitchen when you’re too tired to climb stairs.

Here are five things I wish I’d told you.

First, stop asking “How are you feeling?” I don’t know. I don’t have the words. Some days I feel like a microwaved sock. Some days I feel fine until my body reminds me it’s being chemically neutered. Try “What’s today like?” or just sit next to me in silence. That’s enough.

Second, don’t be the hope police. Let me be cynical. It’s how I cope. It’s not negativity. It’s realism with flair.

Third, never say “at least it’s treatable.” That’s like saying “at least the house fire didn’t reach the bedrooms.” I still have smoke inhalation and a charred dog.

Fourth, forgive me. For snapping, for forgetting, for zoning out mid-sentence. My brain is running on fumes, testosterone-free and dopamine-deficient. I still love you. I just have the affect of a mollusk.

Fifth, laugh with me. Please. Cancer is absurd. The rituals, the jargon, the waiting rooms that smell of fear and disinfectant. If we can’t laugh at this mess, then the cancer wins twice.

So here it is. The manual I never wrote. The words I never said. Use them, ignore them, burn them ceremonially. But know this: if you’ve read this far, you’re already fighting back. You’re reclaiming the narrative. Welcome to the underground.

We have snacks. And sarcasm.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Roger that. You're in the climb-out phase—smooth skies, engines humming, classic acid rock on the headset, and the crew in Radiation Control all smiles and sunshine. Feels almost…rejuvenating.

But just a heads-up from a more seasoned flyer: turbulence typically kicks in somewhere around cruising altitude—say, week 4. Side effects are like delayed weather systems. They don’t hit at takeoff; they prefer to loiter around FL200, then slide in unannounced with a bit of GI crosswind or bladder chop.

So for now, enjoy the smooth ride. But keep your seatbelt loosely fastened. Radiation’s a long-haul flight, and the cabin crew may eventually start handing out fatigue and irritation instead of warm cookies.

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@graybeard46

Hans, once again you leave me speechless, you’ve touched all the nerves in my and others . My wife and friends think I’m being too negative at times but I think most of us know our lives will never be the same and once again part of me wishes I had the knowledge and balls to decline any treatment and enjoy whatever time I have left , once again you have brought me to tears but they are tears of appreciation for those who will follow our horrible journey but hopefully will be armed with more knowledge that most of us had . Thank you for sharing what we all feel. Graybeard

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Dear Graybeard,

If being negative means accurately describing the absurdity of getting nuked, needled, neutered, and nauseated in the name of "wellness," then count me among the pessimists. As for declining treatment—yes, the idea of riding off into the sunset with dignity, whiskey, and a complete set of hormones has crossed more than one scorched mind.

But here we are: the unwilling scribes of the oncology underworld, translating our collective misery into something vaguely useful—if not for ourselves, then at least for the next poor sod who thinks a “minor urinary inconvenience” sounds better than dying.

Tears are welcome, Graybeard. Just don't forget to bill them under "hydration therapy."

With grizzled gratitude,
Hans

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@hanscasteels

Roger that. You're in the climb-out phase—smooth skies, engines humming, classic acid rock on the headset, and the crew in Radiation Control all smiles and sunshine. Feels almost…rejuvenating.

But just a heads-up from a more seasoned flyer: turbulence typically kicks in somewhere around cruising altitude—say, week 4. Side effects are like delayed weather systems. They don’t hit at takeoff; they prefer to loiter around FL200, then slide in unannounced with a bit of GI crosswind or bladder chop.

So for now, enjoy the smooth ride. But keep your seatbelt loosely fastened. Radiation’s a long-haul flight, and the cabin crew may eventually start handing out fatigue and irritation instead of warm cookies.

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Yeah, I get it. But I'm going into it with a GI about as bad as it gets 🙁

And I've made a number of actual crosswind landings back in the day - hope not to have to do it here.

My ride currently is far from smooth, because of GI issue threatening each session. But otherwise, yeah... I appreciate that I'm at the rosy part of the journey. And I know that probably the rest of my life, I face sweating PSA results, and will be lucky if all I do is that, not actually getting the bad ones (two friends going through that).

But for now, I'll hold onto whatever good cheer I can get! And the actual session is, I assume, going to continue to have the same factor - a bit of rest - it's the radiation effects afterwards that start go bite? I've already got a bit of the bladder irriation from it.

What fun we have when we get old. Not. But it beats the alternative.

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To all who read and write here...let's hope Medicare and Medicaid are not treated as if we do not count on it!

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My friends think it's funny when I tell them that I joined this group, but I did it because I know my husband won't. He's five days into 28 days of proton therapy. Yet to start Orgovyx because we're still waiting for Mayo Specialty Pharmacy to sort that out with his insurance.

My husband (of 46 years as of tomorrow) is the sort who lets it happen and I'm the sort who is armed with all of the info I can muster so I have a notion of what the battle ahead may involve. @hanscasteels, I appreciate your frank description of your journey thus far. I'm not looking forward to what the ADT will bring, but at least I have some idea what to expect.

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Life is not fair. Sometimes life will fuck you and you'll just have to change positions and find a way to enjoy it.
God bless you.

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@propane

Life is not fair. Sometimes life will fuck you and you'll just have to change positions and find a way to enjoy it.
God bless you.

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That kinda sums it all up.

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Yeah, who needs testosterone? I never liked it anyway.

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I'm always intrigued with the "dignity" aspect, number 13 in your litany. For over twenty years I have had my genitals examined, handled, scanned, scoped, injected, shaved and probed by doctors, nurses and technicians of both genders. I've read many, many comments about male modesty in the medical setting but truthfully never experienced any concerns myself. All of my caretakers have been perfectly professional and a couple of them thanked me when I didn't make a stink about a chaperone in the room. Now with my nerves un-spared by the prostatectomy, I have no fear of an erection in anyone's presence and I guess that has always been the issue. If our penis was just a urination device, we might feel differently. But since it's connected to sexual pleasure, we worry about embarrassment, maybe even shame. I know many people associate this situation with American culture and the sexualization of all forms of nudity, even nudity in the doctor's office. As I told one nurse before she injected me with lidocaine before a cystoscopy, "if it meant I'd be cured of everything wrong, I'd do this procedure in the middle of your waiting room."

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@proftom2

Great Idea Hans. I am starting my manual now. I have been living the "Palliative Life" for five years. Diagnosis. First they say "You can't be cured, but you can be treated." Here's your triplet treatment (Radiation, Chemo, ADT) and "Palliative Team." I didn't know what they did, I just know they did it extremely well. Over the years I redesigned and rebuilt the team based on my needs survival needs.
Here's the current team: Oncologist #1. Fun loving local oncologist. He manages my overall care/treatments. Oncologist #2. She's a Doc/Processor and big city cancer research medical school. She takes care of my advanced treatments/surgeries and advance technology care. Epically knowledgable. Exercise Psychologist Doc, #1 She manages my physical fitness and mental health. She is my life coach, we walk, talk, drink coffee, set quality of life goals supportive of my "Palliative Life" every two weeks. She is outstanding, vital, and an angel. Cancer nutritionist #1. She is a cancer nutritionist and cancer nutrition researcher. Every three months she examines my cancer journey based on my labs, scans, and treatments. She is also a professor of nutrition and the medical school. Our quarterly sessions are wonderful, educational and supportive of my Palliative Life Goals which are based on quality of life goals established with my Life Coach. We discuss nutrition, not cancer diets, focus on nutrition. Her message is simple Eat Well, Sleep Well, Be Well.
My Palliative team goal is to help me "Live My Best Life Now."

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Hey,
First, wishing you, and all others on these forums the best.
Question, has your nutritionist ever recommended limiting or eliminating dairy products? (Dairy stimulates the hormone, IGF-1, which most studies support stimulates prostate cancer spread and/or tumor growth.)
Thanks much in advance. I may not get back here for a while.

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