D-Day - June 1

Well, it's here. This is my last weekend prior to my surgery next Wednesday, June 1, with Dr. David Lee at the Univ of Pennsylvania, Philadelphia, PA. I cannot believe that I will soon be on that table looking up and the last thing I will be seeing is that big surgical light above me, then hopefully, them shaking me a little while later to wake me up. I hope I am one of the normal guys and goes in on Wed, home on Thurs, cath out in one week - 10 days. I am so nervous and scared.

I know forum members have posted about what I should have ready at home for recovery, but I am going to ask again since it has been awhile since I seen those lists. I have been running around like crazy trying to do all the end of school year kid things, like prom, awards, baseball games, etc. Then I tried to put my house and property in order (I have an in-ground pool) so my kids can simply cut the grass and add chlorine to the pool. We'll see how that goes!

So, can you share what I should waiting for me at home? What should I have for catheter care? While the cath is in, does it ever leak where I need some kind of protection for the furniture I am sitting/laying on? Do I wear any kind of underwear while the cath is in (loose/tight)? Suggestions for sleeping positions, etc. Will I be able to walk around the house, up the steps? Can I eat normally soon? Should I have any stool softeners or lax ready? When do I pull the plug and use them? How about leaking? Will Depends be enough for me once cath gets pulled. How about at night, do they work well enough where I will not ruin a mattress? Or do I need some kind of mattress protectors. I am looking for any tips that can help me thru this.

Some of you may remember that I have pain in the perineal area, almost like my pants are too tight in the crotch. Also inside the very top of my legs, seem more muscular than anything, but NEVER had it prior to diagnosis. Even some bad off again on again lower abdominal pain. Three urologists said it is nothing, or should I say, not PCa related. One finally said last week that it could be pain resulting from my biopsy still. Maybe, as my 3T MRI stated "moderate amount of post biopsy hemorrhage". So, scans and MRI's say all clear, but this pain is what actually worries me the most. I am very worried that PCa has manifested itself somewhere and is causing this. I am very concerned about post-surgical pathology. This is by far my biggest worry.

Guys (and girls), I will not post until I am on the 'other side' and post pathology. My decision has been made and I am confident that I made the right decision for me. However, that still does not change the fact that my mind is not in a good place. I have a real hard time staying positive. I think I just need to get to the other side now.

Thanks to everyone that has offered their support. If any of you can re-post again about any recovery tips I mentioned above, etc, I will be reading this forum until Tuesday night and would most appreciate it. This weekend, I want to pick up everything I'll need for my recovery phase. If you wish, you can email me, as my address is in my profile.

See you in a couple weeks.....I hope I have good news to report.

Jack (JayMot)

JayMot , good list offered by Halbert.
You will be sleeping on your back until the cath comes out. I rented a recliner and positioned it in good sight line from the TV. I slept in it the first couple of nights as it was very hard to get out of bed. After the third day or so I was getting in and out with less of a problem.
Get some lidocaine to lubricate and disinfect the catheter where it enters your Johnson. Disnfectant wet wipes as well.

I didn't have anything on the bed to protect it from leaking when the catheter was in . But the first week after the catheter came out I had a chuck on the bed. As I recall the hospital gave it to me. I didn't need it never leaked at night, but it was good insurance.

I wore shorts around the house with the cath in, and loose boxers.

Nothing else I can think of, aside from what Halbert listed but I'm sure others will add to the list

After surgery expect not too much pain except for some, like me, pain from the air they pump into your attach. For me it was very bad for about 8 days, I think others have had it much better. I mention this because if I was not told about it I would've thought heart attack. It was in my chest, and shoulders. So you might want to get some GasX, it didn't totally solve my problem, but it helped.

Don't be scared, it will go fine, some discomfort and you'll be moving slow the first day or two, after that it starts getting better. And once the cath comes out you are a new man.

Oh, I had no problem walking stairs up to my bedroom, immediately.
Get up and walk the halls the day of the surgery or as soon as possible. The more you move the quicker you regain yourself. (And the sooner you SH!T, which will be a real treat)

And when you get home, plan on walking a lot. I was on the treadmill with the catheter leg bag on day 3.

Good luck and Godspeed

Uh Jack....I'll think I'll retain the title of "Most Nervous" on HW for quite sometime thank you very much (sorry prato). I cancelled 3 surgeries before I was able to do it. And even on the 4th I pushed it out one more week. I think word got out amongst surgeons on the Eastern Seaboard about me. "Careful about that guy island time. He's crazier than a loon running around with his hair on fire. Think twice guys!" I just prefer to look at it as being sane in an insane world. I mean if you're not nervous about "THIS", well.....need we say more?

So I had to get my head right too. That also included staying off of HW. It was that I just needed as much normalcy as I could grab hold of before "the deed". Go for it brother. Go do something, anything that'll connect your world to normalcy. Get your mind off it.

about that pain in your perineum. There's actually a medical term for that. It's called "perineural pain" (yeah its real..Google it) and I was scared about "what would happen to that" too. I even asked Dr. Hann at JH (one of my cancelations, btw) what he thought a prostatectomy would do to it. He thought about it for for a minute before looking at me and saying "I don't know." Well I know (now)...it's better. (Alot better). It still comes very occasionally but nothing like before. I believe it's got to something to do with nerves. It ain't cancer bro. That's all I know.

Jack, prato and halbert all gave great suggestions. I'll just say I never needed anything much. Except...a recliner, and someone to help me (not only to talk to but it's nice having someone do the cooking for you). I went up and down two flights of steps. One from my garage to the main floor and then my bedroom is on the floor above that. One step at a time but more than doable. It won't hurt (the cath) it's just not exactly comfy. A nuisance is the term. I wore a robe around the house with nothing underneath and just carried the bag.

I never had leakage except for some clear stuff that I called the doc about and they said normal. Not enough to make a mess. You'll figure it out as you go about how to sleep. Put a pillow in the recliner.

I never leaked (much) when the catheter was pulled but I was scared I would. I used the underwear almost exclusively and didn't much mess with the pads. Once I saw I wasn't going to leak I went pretty much from absorbant under ware to regular underwear.

One last thing jaymot. It's worth it. Get that crap outta there. Reading about this stuff makes it bigger than it has to be. (It's almost "horror story" like) but it really isn't Jack. It's just that it's been such a big focus for so long for you/us. You WILL be ok. And you WILL feel normal again. Trust me.

(I'm just glad it's over, and you will be too). It's a REAL INCONVENIENCE is what this really is. And i hate being inconvenienced. Especially with my health!!

Hang in there buddy. You'll be fine.

Edit: one more thing. That Bucket at night. Get one. I didnt. Just threw the bag on the floor until one night the drain plug came loose. I didn't discover this until I woke up the next morning. My brother ended up scrubbing the carpet for me and then air drying it with a heat gun to keep it from smelling. Ugh. Use the bucket.

We talk about going up and down steps with a catheter in as if we were being marched to the gallows. It doesn't deserve that air time. That's what make it so big in well...my brain it did anyway.

The only thing I bought but never used was a donut cushion. I was also on the treadmill by day 3. (15 minutes at 2 mph on level, but hey, it was something.

I avoided stairs because I could without having any life issues. We've all heard tales of guys who got tangled up in their cath and fell down. I suppose it does happen. I also went back to work after 3 weeks (20 days, actually), and it was too early. But, you can only watch so many reruns of "law and order". My tolerance for the daytime talk shows was about 5 minutes.

Jay, Best of luck on your big day.

So far you got a lot of good suggestions. The loose shorts or underwear is a good idea with the catheter in if you leak some. I dribbled a lot whenever I walked around the hospital for a few days, I was always holding a paper towel around the head of my penis under the hospital gown to catch any of the drips, I kind of walked around like Napolean with one arm always tucked in my robe. It took a few days before my dim bulb went on to realize to just wear some loose disposable hospital underwear they provided to catch the drips.

If you don't like pain don't be afraid to stay on schedule with the pain meds they prescribe. I learned from multiple surgeries to stay ahead of the pain and not worry about weaning off too soon.I did not wait for the pain meds they used during surgery to wear off. I probably took them like clockwork for the first 3 or 4 days and then started slowly weaning off them over the next 4 to 5 days. I was in no rush and I really don't have any fear of getting addicted because I really know my limit is always around 7 to 10 days total whenever I take pain meds. I probably could have cut back a little sooner but like I said I wasn't in any rush since I wasn't going anywhere anyway. The knee surgery I had I probably only took them for 3 or 4 days total but I had heard from some friends and family that the surgeries through the stomach area can be a bit painful whenever you are doing movements that require some core strength. And the first couple of days just laying in bed and trying to twist and reach for something was a painful chore. I know many may say taking them like I did may have been overkill but I wasn't out to prove anything to anyone, I just erred on the side of being pain free. But as others have mentioned the pain killers absolutely contribute to the constipation so stool softeners for sure and I also had to take Miralax at some point for a few days. I also had to take a suppository at around day 5 or so because I hadn't been able to go. That finally got things going and weaning off the pain meds helped for sure.

Depends Real Fit Briefs were my choice for the men's diapers and the Depends guards and eventually Depends shields were best for me.

Overall the first 24 to 72 hours were probably the toughest part. I got used to the discomfort of the catheter by then. But my testicles really swelled to the size of grapefruits by day 3. I had heard there might be swelling but I was not prepared for that. Just made walking around with the catheter that much more uncomfortable. I know everyone recommends walking a lot but I also made sure to rest a lot for the first week or so too. I also had numbness on one side of my groin area, still do very slightly now, the Docs said it can happen because some nerves not related to the prostate can get cut or damaged some with all that they are doing in there during surgery.

I know it sounds like a lot of stuff may go on during the first week of recovery but I just had it in my mind that I was going to be dealing with only that and it was pretty easy to take it all in stride and through it all I actual had a lot of laughs with the absurdity of it all. I actually ended up sending the picture of my swollen balls to some close friends and family members because they were sooo ridiculous. To this day they cannot believe I sent them but we have a lot of laughs about it still. I blame it on the pain meds, lol.

It is not as worrisome as it may sound, you'll get through it. As others had told me; prepare for the worst and hope for the best. It usually never ends up being the worst so then it's easy to come through with flying colors.

All the best Jay, hopefully you will find some peace from the stress of it all on the day of surgery. I do not like surgery one bit and even have a underlying fear of it. But I really felt more at peace that I was finally concluding all of the hard work and research and stress and moving on to the recovery stage. I felt stronger and much more ready to face the new chapter in this battle. I wish you well....Jim

You'll look back on this and laugh too. (That cliché is true with thus stuff).

You're just in the worst part if it right now. Just hang tough and let it come.

So I was not truthful......THIS is my last post till after surgery!

Thanks for all the great tips and advice. I am ready!

I wanted to share one thing with everyone. I am very fortunate to work for a government agency and have accumulated 280 sick days over my 31+ year career. I do not get paid for them when I retire, but I saved them as an "insurance" policy. I have no long term disability insurance, so this IS my long term insurance. I am cashing some in now.

With that said, I got my Dr. to sign me out of work for 9 weeks. I then added 4 weeks of vacation to the end of it for a total of 13 straight weeks off. My plan was to work hard on any incontinence issues and get pretty dry by my return to work in late August. Will that happen? Who knows?

If I do well in recovery and am somewhat dry, I plan on taking the family on a nice vacation in early-mid August for a week or so. Again it depends (no pun intended) on how continent I am.

Oh, this will also be a retirement test for me and my wife. She is a school teacher. So, we will be together all summer long, EVERY day, ALL day!

J

Definitely the way to do it. Hope you recover quickly and have a great summer with your family.....

Pratoman said...
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Oh, I had no problem walking stairs up to my bedroom, immediately.
Get up and walk the halls the day of the surgery or as soon as possible. The more you move the quicker you regain yourself. (And the sooner you SH!T, which will be a real treat)

And when you get home, plan on walking a lot. I was on the treadmill with the catheter leg bag on day 3.

Good luck and Godspeed

Be very aggressive with your stool softeners and such. I did not eat solid food for 2 or 3 days(got sick of my beloved milk shakes) waiting for that 1st BM, but when it did- though all was very soft/not constpated- I immediately developed a very painful case of bleeding hemorrhoids(sorry for TMI guys) that dwarfed the discomfort of any recovery from my surgery. How ever miserable I was(not very) from my surgery, I was 4 or 5 times as miserable with those rhoids. So avoid that at all cost. I'm not sure how much more I culd have done to prevent it though. I figured it was related to how swollen my balls were. Swollen balls = swollen anal veins/rhoids, seems logical right? But when I mentioned that to my surgeon, he nonchalantly said " Oh yeah, not uncommon. It's because of some veins we must tie off". Well, thx for the warning, Doc. Any way, be aggressive to get things going again. You won't like the results otherwise.

As for walking, I was walking my neighborhood with my mini bag strapped to my leg under my pants within a few days. No problem.

But after maybe a week- out of I think 10 days total(or a few more) with a catheter- can't remember for sure- my catheter started leaking around the bulb. That was no fun, but lasted only 3 days or so. Then I removed it myself at home. My wife removed my drain at about maybe 2 weeks. It was supposed to be removed in a day or two, but it just wouldn't stop draining. And of course after 2 weeks it was stuck. She really had to yank on that rascal to get it to finally snap loose. But amazingly, it did not hurt.

Here's hoping you do great!

I had no problems with the cath other than the inconvenience. Dr kept me in hospital for 3 nights, that helped. The night before cath removal, maybe because of too many antibiotics or laxatives, had the worst case of diarrhea (stopped antibiotics & laxatives then). As with Pato's prune juice, I (later) started with prunes - 4 on oatmeal (porridge) breakfast, 3 in yoghurt at night. Worked well.
I have had groin soreness too for three months since my perineal grid biopsy and found a memory foam chair cushion perfect for chair or car.
Dr prescribed daily Cialis, with a Viagra boost when trying for erection.
For incontinence control when going out to shops, or overnight in bed, I use a medium pad/guard in the "pull up" Depends underpants, mainly for security. Mornings are dry, late afternoons are not. I'm seeing a physio therapist every 3 weeks for a pelvic floor exercise program (of 9 weeks).

-------------------------
Age 66
Stage: T2c
RALP: 11 April 2016

Post Edited (shudderingThud) : 5/27/2016 4:50:27 PM (GMT-6)

celebrate life said...

Funny as we get older that doing the doodoo becomes such an important aspect of daily life.
Beth n Gary

Funny, but so true, I found myself looking for the "like" button

Good luck next week. The only modification I would make to the above suggestions is instead of wearing sweat pants with zippers on the side try backpacker's zip pants. They are lightweight, louse fitting. If you partially unzip the pant legs your day bag will fit with no one knowing that you are wearing it. It also makes draining the bag easy. For me the selling point was the fact that the pants looked like pants.

You may also want to get the pads that look like towels. They are designed for "bed wetters". I am about six weeks post surgery and during the day I am using two pads. Never leaked at night, but these towel pads give me confidence.