So here it is. The manual I never wrote. The words I never said
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.
Hans,, you summed up going through what we do. I say a big thank you. I look forward to reading your posts. I get it, what we have is not funny, but if I don't get through the day laughing, I'm not going to have a good day. I can't change anything, although I'm suppose to lose some weight, but if I dwell on my situation too much I'll never make it. Sir, thank you for your insightful postings. Best to all.
I have been dealing with this since 2011 and you have summed up this experience exceptionally well. Thank you. Never lose your sense of humor it's strong medicine.
Bring on the sarcasm.
I most certainly will not.
I’m going to forward this to everyone I know, you made me laugh, and yes also lacking the testosterone, I teared up a little. I’ve been in this battle since 2016 and it’s been hell, sometimes it wins the day, but mostly keep the refuse to lose attitude. Keep it up
I certainly will, and strength
This hits home like a wrecking ball at the front door. You have hit issues I've and many others have. Thank you and please keep posting. Hell, I'm ready to cry, nope I'm ok, I'm smiling
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."
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
Thanks for the strong post - well said, and I hope writing at least temporarily raises your spirits!
An observation from a newbie (3rd radiation treatment 2 days ago). I have found the treatment to be relaxing and rejuvenating. Lying there, listening to my favorite acid rock, and just spacing out - is comfortable .and I finish feeling good. It doesn't hurt that I have yet to meet a radiation therapist that wasn't friendly, cheerful and helpful.
Just my experience so far.