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

Posted by hans_casteels @hanscasteels, Apr 18, 2025

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.

Or more simply, do not go gentle into that good night.

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Profile picture for tomf @tomf

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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@tomf It is a felony to violate a modesty without permission! Demand same sex providers. And change your consent forms to same. NCSBN Page 33 definition of sexual assault.

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Profile picture for tomf @tomf

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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@tomf I don't believe her. I've been deceived by females wanting to expose me. They say lies to comfort you & maintain control. You have the right to same sex care ! Exposure violations are a felony.

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Hans, thanks for this post! I have had radiation and cryotherapy, but despite negative PET scans and biopsies, my PSA keeps rising. I have a teleconference with my urologist in a few hours, and he's already told me that I will need ADT therapy. My reaction is to say let's just take a chance and see where this goes (I'm 74, so how much longer do I have anyway?), but I know I can't do that to my wife, kids, and grandkids. The thought of ADT is giving me cold sweats (which may be worse than hot flashes), but reading your post helps on a number of levels. I just want to let you know that.

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Profile picture for mzs @mzs

Hans, thanks for this post! I have had radiation and cryotherapy, but despite negative PET scans and biopsies, my PSA keeps rising. I have a teleconference with my urologist in a few hours, and he's already told me that I will need ADT therapy. My reaction is to say let's just take a chance and see where this goes (I'm 74, so how much longer do I have anyway?), but I know I can't do that to my wife, kids, and grandkids. The thought of ADT is giving me cold sweats (which may be worse than hot flashes), but reading your post helps on a number of levels. I just want to let you know that.

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@mzs
I’m 78 and been on ADT for eight years. Had really bad, hot flashes in the beginning, but not everybody does. There are a number of ways to stop the hot flashes, If you have them, come back and ask for help.

Never had fatigue, I run a mile twice a day and go to the gym three days a week. That keeps my muscles in shape because the first thing that happens with ADT is you get A belly because those muscles deteriorate first and then your other muscles start to go. Doing weight training three days a week for one hour offsets it. Nine months ago, I couldn’t get off the floor without pulling myself up on a bed or a chair or a fence, Four months after I started, I could get off the floor without help. You definitely want to have a DEXA scan to see how good your bones are before you start ADT. You should also get a blood test to see how much testosterone you have so you know where you can probably reach, when you stop ADT.

If you have a choice and you really should try to ask for it you should be on Orgovyx for ADT. When you stop, your testosterone comes back much quicker and it does have fewer side effects.

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Profile picture for Jeff Marchi @jeffmarc

@mzs
I’m 78 and been on ADT for eight years. Had really bad, hot flashes in the beginning, but not everybody does. There are a number of ways to stop the hot flashes, If you have them, come back and ask for help.

Never had fatigue, I run a mile twice a day and go to the gym three days a week. That keeps my muscles in shape because the first thing that happens with ADT is you get A belly because those muscles deteriorate first and then your other muscles start to go. Doing weight training three days a week for one hour offsets it. Nine months ago, I couldn’t get off the floor without pulling myself up on a bed or a chair or a fence, Four months after I started, I could get off the floor without help. You definitely want to have a DEXA scan to see how good your bones are before you start ADT. You should also get a blood test to see how much testosterone you have so you know where you can probably reach, when you stop ADT.

If you have a choice and you really should try to ask for it you should be on Orgovyx for ADT. When you stop, your testosterone comes back much quicker and it does have fewer side effects.

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@jeffmarc
Thanks!

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my friend, you missed your calling. thanks so much for the ground truth perspectives on the battle we are all facing. I'm not as far down the road as you, but I'd rather have cold, hard facts than unrealistic, best case expectations. It was good to laugh – several times – about the unfunny disease we are all facing.

If all else fails, you have a career as in stand-up. ive reread it 3 times, and lol each time.

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I love you! Th else are all of the things my husband wanted to say but was too shy, or too scared to face the facts. He lived with this cancer for thirty years, and every time it reoccurred he got quieter and quieter. He passed at the age of 88, happy and at peace with himself, but it would have been more helpful if we could have talked about it,

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Brilliant, I laughed so much that I think I have been cured.
Long may it last and, thank you for sharing this with us all.

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