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A crimson story: My journey with prostate cancer

Prostate Cancer | Last Active: 54 minutes ago | Replies (33)

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@hanscasteels

Chapter 7 -The waiting. The endless waiting
Subtitled: How Time Slows to a Viscous Gel and the Universe is Measured in 3-Month Increments

Once upon a time—by which I mean two or three urology referrals and a suspicious PSA ago—you were a person. Possibly even an interesting one. You had interests. Hobbies. Opinions about coffee. Then came the news: prostate cancer. Your dance card is filled up with acronyms. PSA, DRE, MRI, CT, ADT, EBRT, HDR, LDR, RP, and of course, the charming and never fully explained T3b N0 Mx. You learned to speak fluent Oncologist in under a week. You made treatment decisions with the unearned confidence of a Vegas poker player with a 4-7 offsuit.And then…Nothing.Well, not quite nothing. You still inject Firmagon into your belly with the regularity of a moon cycle. You burst into tears during car insurance ads and find yourself standing in the kitchen trying to remember why you’re holding an empty mug. The testosterone has been banished like a heretic from your endocrine monastery, leaving in its place a strange stew of cardigan-collecting, REM-cycle-wrecking, spontaneously-sobbing uncertainty.But medically?You’re in the Waiting Room of Time itself.This is the phase of prostate cancer they never write about in the brochures: the inter-treatment existential drift. You’ve joined the church, been baptized in the holy waters of ADT, genuflected before the altar of radiation, possibly had a few radioactive seeds stuck up your unmentionables… and now you wait. For numbers.Because that’s what life becomes now: a numeric cliffhanger.You no longer measure time in birthdays or holidays. You live from PSA test to PSA test, each result a roulette spin at the Cancer Casino. Will it be lower? The same? Higher? Oh god, what does slightly higher mean? You check your patient portal like a teenager stalking an ex on Instagram. You refresh. You guess. You predict. You bargain.The days leading up to your PSA test develop their own kind of weather. A low-pressure system of anxiety creeps in around day -3. You feel it in your bones. Or maybe that’s just the EBRT. By day -1, you're checking if the lab tech looked concerned while drawing your blood. By day 0, you’re Googling “PSA fluctuation after radiation” and “Can stress raise PSA?” while eating bran cereal and despair.Then there’s the time after the test but before the result—a Schrodinger’s cancer interval in which you are simultaneously cured and terminal. You parse your oncologist’s opening words like a Kremlinologist. Did he say "Good to see you" or "Good to see you"? Was there a pause? A sigh? An ominous throat-clearing?If the result is good—undetectable, flat, beautiful—you feel, briefly, like someone has lifted a boot off your chest. You smile. You celebrate with... what, exactly? A nice walk? A cup of decaf tea? A single, dignified fist pump while alone in the bathroom?But the feeling doesn’t last, because in three months, the roulette wheel spins again.If the result is bad—well, you spiral. You google more. You question everything. You wonder if that single glass of wine six weeks ago unleashed biochemical hell. You re-read your treatment plan looking for hidden betrayal. You ask yourself what the hell you’re supposed to do now. And then... more waiting.No one prepares you for this chapter. Not the pamphlets. Not the earnest young oncologist with his iPad of doom. Certainly not the nurse who said “It’s a slow cancer” like that was supposed to help you sleep.This is the chapter where you are not actively dying, but not actively living either. You are suspended. Medical limbo. You grow your hair back. Or lose it somewhere else. You get used to hot flashes and bone aches. You write half a novel, or learn to knit, or doomscroll articles about how prostate cancer is now "95% survivable," all while your identity—your entire sense of self—gets annexed by lab results.You are, to all outward appearances, fine. But you are also living in a quantum fog of fear, tinged with just enough hope to keep the whole damn farce going.And so you wait.For numbers.For evidence.For time to pass.For the next chapter.Possibly titled: “Oh Look, Another Scan.”

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Replies to "Chapter 7 -The waiting. The endless waiting Subtitled: How Time Slows to a Viscous Gel and..."

My hunch/intuition is that time is suspended for you while involved in the creative endeavor of writing. Now, if you can live creatively full time…

Thanks for all your writing, I am so fortunate my treatment was nowhere as dark as yours.
Stay Strong Brother, We Got This.

You nailed it again H.C. Fortunately (unfortunately.?) the lab I use has a turnaround time of less than 24 hours for PSA. So I only have to click and refresh about 100 times in one 24 hour period!

In response to your wife's comments - I do not understand how "writing" and "connecting" with support group is NOT a way of therapy (???) . It is very well known and documented fact. Even if it was not the fact (which it is), you obviously have a need to express yourself through writing and it must be helping you on some level, or you would not do it, right ? I find her comments dismissing and patronizing to be honest :(. Perhaps she feels excluded or "not enough" ?