Devastated by support group meeting: I'm doing everything wrong

@surftohealth88

Yep, that’s been my experience so far (very limited, admittedly).

I’ve been posting on a non-PCa forum about everything I’m going through, because there are several men on it in various stages of BHP & PCa, so there’s a lot of interest.

I gave an accounting of my catheter removal, which was so painless I could have easily fallen asleep…had it lasted more than 30 seconds, and I immediately had several people disagree with me, saying theirs was excruciating.

With the soreness and swelling - I was very sore the first day home (I was in the hospital overnight), but it wasn’t my incisions, it was more of an internal soreness, sort of like I’d gone crazy with a gym workout after being a couch potato my whole life…just a very sore abdomen and just up above my groin.

It subsided pretty quickly, no oxy necessary, but it took a few weeks before my tummy went from swelled and distended to its usual middle-aged slight paunch.

Everyone’s different. I barely felt capable walking at the hospital, and the next day wasn’t much better, but by the second day home, I was slow, but I could manage quite easily. Every day was a little bit better. By the time I went back up for my catheter removal eight days later, I was moving fairly easily, but still had some tenderness, especially in my perineum. I think I sat on a cushion in the car for a solid two months (those VW seats are stiff!).

@turtbean Oh, you just described my abdomen pain perfectly....it's internal abdomen soreness just above the groin where you feel like you've been punched and kicked multiple times. It's better, but slow going so far. When I had spasms, it rolled right through this section, but really didn't feel like the bladder location. Fortunately, those have mostly subsided.

Always a party!

@fritzo Oh man, I had zero pain but if I coughed or cleared my throat my abs felt like an MMA fighter had backed me into a corner and used my body as a speed bag.
Phil

@fritzo ,

glad you are out of the surgery and full of humor. This helps with the healing. Make sure you stay hydrated. Have you had your first bowl movement already?

@dinu Humor, sometimes it's all we got 🙂 Have laid the golden egg, so that is good. It wasn't impressive, but don't think there are style points on this journey. Thanks checking!!

@fritzo @dinu makes an excellent point: stay regular, use MiraLax or similar osmotic laxative so that you do NOT strain on the toilet.
You don’t want to blow out all those delicate surgical connections…like I did!😩
Phil

@fritzo @dinu makes an excellent point: stay regular, use MiraLax or similar osmotic laxative so that you do NOT strain on the toilet.
You don’t want to blow out all those delicate surgical connections…like I did!😩
Phil

If there is one thing I've learned in this cancer journey that never ends - despite having the RP if you choose to do so - is that every cancer is different, and every urologist has their own philosophy that they put into their practice and care of patients, and all of us suffer the physical and emotional outcomes of this frustrating disease, because ultimately it all just delays the inevitable: the recurrence of the cancer. It all comes down to the overly used, but very true saying: "you'll likely die of something else before your prostate cancer kills you"...and that is even for those who had their prostate removed, and who had radiation, and ADT, and all of the crap we go through. The disease just seems to come back in many men. Renegade cells that some refer to as "dormant" or "sleeper" cells, hang out in your body for months, usually years letting you believe that you conquered the cancer...that you are a survivor. Then one day, your "next" PSA has increased. What? Repeat the test: same result...over double what it was last time. How is that possible...my prostate is gone...it has been five years since my RP? And so it goes. I often feel this double emotional existence of: "I'm safe...my prostate, seminal vesicles, and vas defers are all gone, and my follow-up PSA levels, including ultra-sensitive PSA, have been great at < 0.006 ng/ml...I conquered it." But like many (most?) of us who had Extraprostatic Extension ("EPE") and surgical margins, and the tumor classification that signals a likely 25-50% probability of recurrence within five years, you fool yourself into thinking that you'll be one of the more fortunate 50-75% that sees no recurrence. Then one day in our future, that PSA does start to increase. Why/How after all of these years? The "sleeper"/"dormant" cells turned themselves on, and your cancer is now back.
I'm still good just one year post-op, but this experience has forever changed my outlook on life, and what each day is like. You go on living each day to the fullest, in your normal routine, but you feel like you have a time bomb strapped to your groin, and you hear the incessant "tick, tick, tick, tick, tick..." You ask yourself: why wasn't I one of the lucky 7 out of 8 men who do NOT get prostate cancer.? With 1 out of 8 men getting it, why wasn't I one of the seven that didn't get it? I friggin' hate this. I am selling musical instruments and artwork and other items that I don't want my kids to worry about selling someday when I die, because they will be taken advantage of not knowing "how" and "where" to sell the items. I've said this before: women have all kinds of pre- and post-surgical groups and therapy options for breast cancer, uterine cancer, and ovarian cancer. Their therapy is paid for by insurance and Medicare. Why don't men have the same level of therapy and emotional support that is paid for by insurance and Medicare? "Why"...because we're men and we're supposed to tough it out like we tough-out every other thing in our lives. We only have this blog and online seminars to explain things so we can arrive at a place where understanding might afford us some temporary peace and stability. So...make your best decision sir, and be at as much peace as you can muster. Live your life to the fullest as I am trying to do...like we all are...while we keep our fingers, toes, and eyes crossed with hope that our cancer does not return.