My RALP Experience - The First 10 days

Day 0 – Monday – Surgery Day

Arrived at the hospital at 7am. Pre-surgery they placed an IV and I handed my belongings over to my wife. I waited until the OR was ready, which was scheduled for 8:45am. At 8:40am, I was rolled out, gave my wife a kiss, and then rolled over to the OR hallway just outside the room. The surgical team came by and introduced themselves. They were incredibly kind and answered all of my questions before I went in. One even offered her phone so I could look something up that I couldn’t remember. The anesthesiologist also came over to say hello and answer any questions. As they rolled me into the room, they described in advance what the OR would look like. Extremely bright lights, lots of activity, and the robot visible to my left.

As described, inside, there is a ton of activity. Bright lights, lots of people, everyone doing something different. One person is putting a cuff on your arm, another is checking your pulse, someone else is doing something else entirely. It feels like a TV show. The surgeon came over and said hello. Did final checks with the full team around me and then got to work. The anesthesiologist started chatting with me about my work. He asked me a question and I could feel the anesthesia starting. Before he finished the question, I was out.

Surgery lasted about five hours because they also removed lymph nodes. That’s why it was multi-port in my case, five incisions. With single port they can’t access the lymph nodes.
I woke up in recovery (called the PACU) feeling disoriented, but not woozy or nauseous. Everyone is different. They offered me OxyContin, but I wasn’t in that much pain and I try to avoid stronger meds so I declined. I stuck with Tylenol and never needed anything more. Once I became more alert they rolled me to the area where I would be for the night. I don’t really remember this as I was still pretty out of it. This is where my wife joined me for the first time post surgery – around 3:30pm.

The rest of the day I was on clear liquids (broth, tea, jello) only. There is ice water and you’re encouraged to drink as much as you can. They also bring by a breath thing that you breathe into to help regain deep breathing. All moves were very slow, but got progressively better over time. They had automatic compression cuffs on my ankles to prevent clots. They gently inflate and deflate. Not painful, just a little annoying after a while. My wife and I just sat there and I dozed off some.

Some people get shoulder pain from the gas used in surgery. (They blow gas into you to make room for the robot). I fortunately didn’t have that problem. The initial goal is to try to stand up and walk a little, which I did around 10pm. I took an extremely slow careful walk holding onto my IV pole, with a nurse on one side and my wife on the other. All movements were like in slow motion. Back in bed, the goal is to start passing gas. It means your insides are starting their return to normal. I did start passing gas overnight. The first time it happened in front of my nurse, and he joked, “trying to show off?”

Day 1 - Tuesday

I was woken up a few times overnight for medicine and vitals check. One time to take blood (which felt unnecessary?). I woke up in the morning sore and moving slowly. The doctor came by, and with my vitals good and having taken a walk and passed gas, she moved to me to solid food. I ordered eggs and toast and ate a little bit. I started to feel a bit human and like myself.

They showed a video about my catheter and a nurse showed me how to use it. Emptying the bag, switching bags, showering. Incisions are small with dissolvable stitches and glue on the outside. Showering is fine, just don’t rub. No baths. I went for another walk, this time without the support of the IV tower. Still very slow but got there. Think a 98 year old man trying to slowly move down a hallway.

We were discharged around noon. My wife helped me get dressed (socks and sneakers were impossible to reach.) They usually wheel you out, but I felt comfortable walking out on my own. Again, very slowly.

I wore loose sweatpants with the catheter tube coming out near my ankle and the bag in a
shopping bag I carried. It worked, but I would strongly recommend sweat shorts if possible. I switched to those once I got home and lived in them.

Came home with a full list of meds that we got from the hospital pharmacy: blood thinner, muscle relaxant, bladder spasm medication as needed, Tylenol, Oxy, and an antibiotic for when the catheter is removed.

At home I expected to be exhausted, but I was more tired than wiped out. Eating was hard. My stomach felt twisted up. Not painful – just not “open”. Sitting upright wasn’t really possible. Reclining was.

Getting up from the couch or bed was doable, but took effort because of abdominal discomfort. My stomach started making a lot of gurgling noises as things started to wake back up. I ate some soup – as much as I could.

Sleep that night came in 2 to 3 hour chunks. Woke up at 6am to a full catheter bag that needed draining.

Day 2 - Wednesday

Significant improvement in mobility. I skipped Tylenol overnight (what would have been the 3am dose), and I could therefore feel the incisions in the morning, but it wasn’t bad. Getting out of bed was still uncomfortable, but much easier. I could carefully engage my core a bit. With less abdominal pain, the catheter became the main annoyance.

I was able to undress, shower, and dress myself, very slowly and carefully. Holding onto a counter helped with balance while getting dressed.

I ate a bit more, but still not much. Rested in the afternoon and had my first moments of feeling normal again. I could take a full breath for the first time – not deep, but full. Getting up and down became more about managing the catheter than needing body support. By later in the day, movement started to feel close to normal at times. That was a big mental shift.

Tried to nap but didn’t. I should have. By 9pm I was wiped. My wife made salmon and vegetables. I didn’t think I was hungry, and went to pick at it. I ended up devouring all of it. My first real meal.

I slept better than the night before.

Day 3 - Thursday

Woke up a little hungry for the first time. Ate oatmeal and fruit. Started feeling like I might need to have a bowel movement, but nothing yet. Changing clothes was easier. The catheter was now the main thing dictating how I move, not the incisions.

We took a car to the airport. I chose larger cars so getting in and out would be easier. We planned this well. I was ready for the short flight today. I could have done it yesterday, but it would have been a bit of a push.

At the airport, I got out of the car and walked into the airport. As soon as I started walking into the airport, I leaked around the catheter - quite a bit. My underwear was fully wet. It was alarming at first, but I learned this is common and likely a bladder spasm. We bought female menstrual pads and lined my underwear. (Dry ones - we fortunately hadn't yet checked our luggage.) The menstrual pads worked pretty well, but I wish I had worn Depends for the flight. This leakage continued pretty regularly. As long as the bag was also being filled (which it was), this is normal and not a concern, but no one had told me about this.

At airport security I told them about the catheter when it was my turn at the scanner but before going through. They brought me aside for a pat-down and swabbed my hands and shoes. They were very kind. After the flight, I changed the pads. It was wet, but manageable. Walking through the airport was slow but fine. Mentally I felt completely like myself.

When I got home, I climbed a flight of stairs at home slowly. One step at a time. This was fine, but more strenuous than I’d anticipated. I still wasn’t eating much. My stomach still felt “tight”. No bowel movement yet.

Tried a leg bag for the first time. Much more freedom and I liked it. Switched back to the big bag for sleep.

Day 4 - Friday

More of the same physically. Slight improvements in movement and eating. Emotionally, there was a bit of a dip today. Not depressed, but definitely feeling low. It makes sense. Poor sleep, low food intake, too many meds, and constant awareness of discomfort (or potential discomfort) from the catheter. I ended up sleeping hard for four hours midday. That felt restorative.

Urine is now mostly yellow instead of red, though it can fluctuate. I’m still leaking around the catheter. Started taking the bladder spasm medication. This was to be taken “as needed”. I wish I’d started it sooner, but this wasn’t a huge problem except for a few spasms that were really uncomfortable squeezes around the catheter.

Current meds include Tylenol, Colace, blood thinner, muscle relaxant, bladder spasm medication, and XTandi.

Still no bowel movement. I am now oddly hoping to make it to catheter removal without having to poop. We will see!

Regarding the catheter, irritation at the tip of the penis became the most noticeable issue today. Started using the surgical lubricant around the tip where the catheter comes out, which helped a lot. The hospital gave me little packets of that lubricant to take home. Highly recommend.

Day 5 - Saturday

Slept a bit better. Still not great.

Fatigue hit hard today, likely from low calories. Even simple things like switching the bag or walking downstairs felt like effort.

All movement is now about managing the catheter, not the surgery. Emotionally, I hit a bit of an anger phase. Not overwhelming, just there. The ongoing pain (annoyance is perhaps a better word) of the catheter was - forgive the word - draining. It made the day pretty frustrating.

Turns out this may have been my fault. We had ordered a variety of leak underwear, and I was wearing a pair from a box marked “Large”. The underwear itself, though – I realized at the end of the day, unfortunately – was “small”. (They felt tight of course, but I thought maybe that’s the how this kind of underwear is meant to be. IT IS NOT. It should feel as comfortable as your regular underwear.) So the pain in movement all day today was, embarrassingly, my fault for not checking the size of the actual underwear and just trusting what the box said. This was an amazon order and I think a overseas generic company - not Depends or something like that.

Had a much better evening once my underwear was sorted. Still eating very lightly. Now really hoping to avoid a bowel movement until catheter removal.

Day 6 - Sunday

Woke up feeling surprisingly good. Must have slept better. Incisions are basically a non-issue now, though I still sleep with a t-shirt (normally I don’t), because rolling around rubs them and makes me feel them.

Bladder spasms continue and are the most irritating part. Sometimes painful, sometimes just uncomfortable. A heating pad on my lower abdomen helped a lot. I really recommend this.

I realized my brain was turning to mush from too much passive TV, so I started a project to engage mentally. That also helped a lot. Highly recommend doing something mentally active when you can. Read a book, do a puzzle…just start engaging your brain and turn off the TV for a bit.

Still not much appetite, but I made myself eat small amounts, as I’m sure that the cumulative lack of calories was having an effect. Still no bowel movement.

Stopped bladder spasm meds today in preparation for catheter removal and started the antibiotic, both as directed.

Day 7 – Monday – Catheter Removal

Woke up ready, but more than a bit nervous. Went to the urologist’s office. I met with the urologist first. We discussed how the surgery went and discussed some next steps. We also discussed how the catheter removal would go. (This is my NY urologist – not the place where I had the surgery.)

I went back with the nurse to the room. I’m not going to lie: the removal itself hurt a lot for about three seconds, then it was over. I acknowledge that I’m particularly squeamish about medical stuff like this, but oof.

Afterward, I felt great. A few hours later, I had a very large bowel movement. I was able to wait until after removal, but I did not hold it in any way to achieve that, as holding it would have been bad. Just lucky how it worked out. I focused on not straining at all. There was some material gas pain during the bathroom session, including shoulder pain for the first time, which fortunately passed fairly quickly. It felt like my insides were readjusting themselves, which they probably were. No pain other than the gas pain described.

Leakage was heavy all day. At one point I stood up and fully emptied into the depends. That was discouraging. But as the day went on, I started to get a sense of the muscle again. Later that evening, I felt the urge to go and made it to the bathroom. I leaked along the way, but got about 60 percent into the toilet. That felt like a huge win.

Days 9 and 10 – Tuesday and Wednesday
Final entry.

To my surprise, I was able to wake up overnight, feel the urge, and make it to the bathroom. Some leakage along the way, but manageable. I used a waterproof pad and towel just in case, and the overnight depends held up fine. During the day, I continued improving. I can feel when I need to go and make it to the bathroom, though I still leak a bit on the way. Ultimately, sitting or lying down, I have some amount of control, but standing or climbing stairs, there is no control. This is very normal and the fact that I can hold it at all is a good sign that I’ll be able to recover.

I’m having almost no pain at all. The only exception is that my perinium hurts if I try to sit on a firm or hard chair, or if I am too “sunk into” a couch or something. And sitting and leaning over to put shoes hurts that area a lot. So I put my shoes on standing up for now.

Back to work on Wednesday with added protection. I put a max shield inside a depends, and swapped out the shields. This worked well. I needed to swap every hour or so. When I waited longer, it was a mistake as things got too wet.

Haven’t started kegels yet because the muscle feels tired already from what it’s currently doing. I’m planning to start kegels once it strengthens a bit naturally. Life starts to feel like getting back to normal, though I'm still getting used to the depends and the shields.

Final Thought

I know everyone’s experience is different. I’m also aware that being 54 likely helps my recovery, since I’m on the younger side and generally healthy.

Reading others’ experiences helped me a lot going into this, so I wanted to share mine in case it helps someone else.

This is manageable. It’s not fun, but it’s manageable. Good luck to anyone going through it. Don’t despair. You can do it.

Thank you all so much for sharing your stories and experiences. It made the entire process far easier for me, and I hope this journal pays that forward at least a little bit.