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What to buy in preparation for RARP

User
Posted 04 Aug 2025 at 17:05

Hi All,

 

Due to have surgery in 4 weeks time (not looking forward to that!) and wondered what everyone recommends buying in preparation for surgery, TWOC and recovery?

Thanks

Nick.

User
Posted 06 Aug 2025 at 18:27

Hiya mate another Nick here , hope your well and getting head around it all

where are you having surgery and I’m presuming you don’t live in London by your post above ?

im also having surgery at London Bridge hospital in a few weeks 

leading clinical nurse there sent me a shopping list which included

instillagel to reduce catheter irritation

Bepanthen ointment to prevent soreness if you have leakage

Tena level 3 pads

unperformed soap

ear plugs for when in hospital overnight

prune juice for just before then after surgery to help against constipation

loose pants/ jogging bottoms

If you do live a fair way out of London like me ( 110 miles) the main concern I had was having to go back to have the catheter removed , it was a massive relief when I was told that I don’t need to if I can find somewhere local to me who can remove it which I have 

all the best with it

Cheers

Nick

 

 

 

 

 

 

User
Posted 07 Aug 2025 at 11:09

I too always sleep on my side and was worried about sleeping with the catheter in and stocked up on books, ipad to watch with headphones and so on, expecting long difficult nights. In the event it was just fine and much easier to adapt than expected. My wife graciously moved to the spare room for a few days to give me freedom to be awake and restless, and the first couple of nights I was anxious about dislodging it somehow but sleep routine returned after a few days. 

 

Good luck.

User
Posted 07 Aug 2025 at 18:02

Best of luck. My husband was also under London Bridge although had his surgery at guys. We stayed in London for 3 weeks (from Manchester) as it was over Christmas & New Year so we didn’t want the Christmas hassle at home. He slept on his side and overall the catheter he didn’t find too bad, ended having to keep his in for 4 weeks aswell and back and forth to London with it in which we hoped to avoid but was fine 👍

User
Posted 07 Aug 2025 at 20:03

Thanks Nick.

Yes we became desperate for a date and we were offered 21st December so grabbed it. Yes I think most it’s just a week with the catheter, he had a very slight leak apparently so as a precaution they kept it in. I remember Christmas Day it became a bit blocked with little blood clots so I was panicking a little but did lots of manoeuvring and squeezing the pipe and it unblocked. Also got lots of help from this forum.

Rob did have a recurrence, however we went into the op knowing it had already spread to his lymph node, although they removed 14 of them we assume it must have escaped somewhere else too. He had RT and HT which is just finishing but psa rising slightly. We have a scheduled appointment coming up but I think it will just be monitoring for now. 

Best wishes for the op, if it’s anything like Rob’s experience (as in the operation and recovery) then you will be just fine 👍

User
Posted 10 Aug 2025 at 01:17

Hi Nick, I’m 71 and am just 16 days post-RP. This is my first post on here and hopefully my experience might help you prepare for your op.

I had my (salvage, robotic) surgery at Guys but live near Birmingham and although the journey home on day 2 was daunting I’m fortunate that my wife and daughter came and drove me home without incident. 

This was my fourth - hopefully last - experience of a catheter. Mostly I find them a little uncomfortable, but rarely painful, and the 12 days (in my case) went OK, with no UTI’s. I could sleep on my back or either side and the night bag has enough tube to accommodate any position. The idea of a bedside bucket is a good one although I never had a problem just laying the bag on the floor. I did buy a piece of rigid waterproof sheeting from a builders merchant and cut it to fit by the bed as a precaution but it was never needed. The Prostate CNS’s at Guys have the best advice I’ve seen on managing your catheter, and what to expect right through from surgery to post-op consultation. If you can’t access it online I may be able to share a link.
I have had no pain from my prostate area and the 6 surgery ‘keyholes’ have all healed well, with just minor discomfort for the first day or two. Today just one still aches a little but it’s not bad enough for painkillers. The ‘wind aches’ from the CO2 they pump into you were also much less than I expected and were gone in about 36 hours.
You might find a tightly rolled up towel helpful if you need to cough or sneeze in the early days - just hold it tightly to your abdomen.
On nurse recommendation I took paracetamol 4 times a day for the first 4 or 5 days but I don’t really think I needed them beyond day 2. If not supplied to you I would recommend getting some lactulose and some sennaside tablets. It was 4 days before I opened my bowels and these helped keep things soft so you don’t need to strain! Just be patient and things will happen in their own time!

The day my catheter was removed, day 12, I leaked like a sieve and had no control. Make sure you have big absorbent pads for the first few days. Since then each day has been a little better than the one before and I feel I’m making OK progress, although I still have a way to go until I’m dry. Night time is the best time for dryness and I've slept well, with no bed-wetting. There is Life-after-Catheter too: on Day 14 I went for a 50-minute, 5500 step-stroll and today, day 16, we’ve been out for a Cream Tea!!
The Kegel pelvic floor exercises seem to make a huge difference to continence and if you’re not already doing them it will really help if you start at once and get into the habit. Get the ‘Squeezy’ app for your phone! You can’t do them while you have the catheter.

A few days ago my surgeon called to confirm the pathology report showed all margins were clear, so I’m hoping from here things will continue positively.

I do hope your op goes well and that the above is helpful. If you have any questions at all please just ask.

Edited by member 10 Aug 2025 at 01:23  | Reason: Not specified

User
Posted 11 Aug 2025 at 08:15

Hi.

I was totally paranoid about the catheter when I had my op lasy July. It won't fall out and you will find it ok sleeping on your back for a few days, I slept slightly propped up in a few pillows  which stopped me rolling. Emptying the bag is fairly easy as you just walk to the loo and you can drain it through a tap at the bottom, a bit like peeing normally. The night time bigger bags are great use. I found it better if your partner can change them out in the morning.

You will need to drink a lot so you will be producing more pee than you wiould think normal, just keep an eye on it. Also don't worry about the blood had me freaked out for a bit, it does clear. Oh and I remember sneezing once and blood comming out around the Catheter at the tip of my penus, apparently it happens, no one told me first. The big thing is never panic about the gross things, you can always ring your urology department and nothing is too small or 'daft' as far as they are concerned.

Plenty of Kegal exercises before the op if you still have time (though to be honest I didn't to that many), then after the op you cant do any untill after the Catheter is out, but work it as soon as you can after it's out. Hopefully you have the Squeezy App on your phone already. I started 3 times a day got it to 10 second sets, then I ran into a phisio who'd had the same and he got me onto 6 times a day at about 3 weeks post op. Made a huge difference. Now I only have issues if I cough uncontrollably.

Oh, One last thing after the cathater is removed you don't have any controll for a bit. I had a 1.5 hour drive home from the hospital and had to change the pads they give 4 times. So make sure you have them with you. As you won't be driving have someone that can make diversions if needed. Take some food waste bags (opaque 10L are plenty big enough) because men's public toilets don't always have bins that you can use and you may have to carry it out the loo to a normal waste bin somewhare. If you have it all tied up in one of those it's less awkward for you.

Good luck, Hope you do well. I managed to interval the GNR 10 weeks post op (My surgeon thinks I was pushing it as he said he expected me to have walked it) It is a struggle post op, but stick with it and fight on, never give up.

Edited by member 11 Aug 2025 at 08:20  | Reason: Not specified

User
Posted 04 Aug 2025 at 18:22

Wingers, main thing is a packet of your favourite biscuits for a midnight snack after the surgery. If you put biscuits into the search box above it will bring up loads of posts and lots of links in the posts. 

Thanks Chris 

User
Posted 05 Aug 2025 at 09:14

Hi Wingers.

This conversation may help.

https://community.prostatecanceruk.org/posts/t31822-RARP-support-please

Good luck, mate. 👍

User
Posted 07 Aug 2025 at 08:50

Hi Wingers,

Apart from what has already been mentioned I'd suggest plenty of paracetamol and Ibuprofen for the pain. The most useful thing I did buy though was a £1 bucket from B&Q for the night bag while the catheter is in, this ended up being a godsend.

Dave

User
Posted 07 Aug 2025 at 09:19
Hi Nick,

Thanks very much for the list, it is realy helpful.

I'll also be travelling a similar mileage (115) for the operation at the Princess Grace in London and also had the same concerns over the travel there and back to have the catheter removed. Luckily my daughter has a flat in London that I can use to stay close to the hospital and her husband will be ferrying myself and my wife to and from hospital and home. I would say though that I would much rather have been staying in my home where everything is to hand.

I really hope that all goes well for you, good luck!

Thanks

Nick.

User
Posted 07 Aug 2025 at 10:07

Hi Nick

thats great news having family who live nearby should make life easier , I go down 2 days before the op as I go in the hospital the day before for all pre checks etc so am booked in a hotel that is virtually next door , I am then in hospital for 2 nights, we have 2 lads at home and my wife isn’t also that confident on driving in London so a friend is taking me and he will stay in the hotel then bring me back home 

good questions on sleeping positions with catheter in , I was wondering the same as I always sleep on my side 

wishing you all the best also mate 

cheers

Nick

User
Posted 07 Aug 2025 at 16:00

I found sleeping on my side was impossible due to the pain from the surgery but not the catheter. The night bag plugs into the bottom of the day bag and has enough tube on it that allows for a bit of space when in bed. To be totally honest, I tended to sleep in the living room on a reclining sofa as found it more comfortable

Dave

User
Posted 10 Aug 2025 at 11:54

Hi Nick,

Your wife sounds just like me! I think doing and organising everything though makes us feel less helpless in a situation that is mainly out of our control. I fell apart before diagnosis when we thought it had spread everywhere but focussing on getting him better definitely brought me round.

I phoned the hospital ward on Christmas Day as we were staying 15 mins away, they were happy for us to go back but luckily it cleared so didn’t have to. I’m sure everything will be just fine. Everyone is so different so it’s so hard to know how it will go, I think I prepared us for the worst and luckily it was nowhere near that. Robs catheter removal was fine. We went back to London (as it was 4 weeks later) and stayed in a hotel. I was panicking with puppy pads and sheets on the bed etc but he was completely dry through the night. We even went out for dinner and he felt the need to go to the toilet which was good and at most had a few dribbles.

Thank you for your best wishes for Rob too. Yes we would have preferred things to be different, but we’ve been very lucky that he has taken each step in his stride and just got on with it. We’ve had an incredible 4 years since diagnosis with so many good times and adventures. Hopefully we can just keep doing the same. 

Take care and please keep us posted on how you’re getting on.

Best wishes

Elaine

User
Posted 11 Aug 2025 at 08:28

Hi Again

Also for the hospital  I reccomend You make sure you have your phone charger and a good head set.  I also recommend audiable app and BBC iPlayer as I found it increadibly hard to stay focused enough to read. But you can drift in and out while someone reads to you, it's quite reassuring.

Show Most Thanked Posts
User
Posted 04 Aug 2025 at 18:22

Wingers, main thing is a packet of your favourite biscuits for a midnight snack after the surgery. If you put biscuits into the search box above it will bring up loads of posts and lots of links in the posts. 

Thanks Chris 

User
Posted 05 Aug 2025 at 09:14

Hi Wingers.

This conversation may help.

https://community.prostatecanceruk.org/posts/t31822-RARP-support-please

Good luck, mate. 👍

User
Posted 06 Aug 2025 at 14:15
Thanks both,

That's really helpful. Sorry for the delayed reply I've had to spend a couple of days in London for pre-op assessment.

Thanks

Nick.

User
Posted 06 Aug 2025 at 18:27

Hiya mate another Nick here , hope your well and getting head around it all

where are you having surgery and I’m presuming you don’t live in London by your post above ?

im also having surgery at London Bridge hospital in a few weeks 

leading clinical nurse there sent me a shopping list which included

instillagel to reduce catheter irritation

Bepanthen ointment to prevent soreness if you have leakage

Tena level 3 pads

unperformed soap

ear plugs for when in hospital overnight

prune juice for just before then after surgery to help against constipation

loose pants/ jogging bottoms

If you do live a fair way out of London like me ( 110 miles) the main concern I had was having to go back to have the catheter removed , it was a massive relief when I was told that I don’t need to if I can find somewhere local to me who can remove it which I have 

all the best with it

Cheers

Nick

 

 

 

 

 

 

User
Posted 07 Aug 2025 at 08:50

Hi Wingers,

Apart from what has already been mentioned I'd suggest plenty of paracetamol and Ibuprofen for the pain. The most useful thing I did buy though was a £1 bucket from B&Q for the night bag while the catheter is in, this ended up being a godsend.

Dave

User
Posted 07 Aug 2025 at 09:19
Hi Nick,

Thanks very much for the list, it is realy helpful.

I'll also be travelling a similar mileage (115) for the operation at the Princess Grace in London and also had the same concerns over the travel there and back to have the catheter removed. Luckily my daughter has a flat in London that I can use to stay close to the hospital and her husband will be ferrying myself and my wife to and from hospital and home. I would say though that I would much rather have been staying in my home where everything is to hand.

I really hope that all goes well for you, good luck!

Thanks

Nick.

User
Posted 07 Aug 2025 at 09:26

Hi Dave,

Thanks for that extra information, I'll make sure that I have something in ready for a nightstand and stock up well on the painkiller front!

I have been wondering lately how you sleep with the catheter in - Is there a tube connecting to the night bag or does it connect directly to the day bag and can you move much in bed.  Also, can you sleep in any position or do you have to sleep on your back? They sound like silly questions but it's not the sort of thing you normally have to think about!

Thanks

Nick.

Edited by member 07 Aug 2025 at 09:54  | Reason: Not specified

User
Posted 07 Aug 2025 at 10:07

Hi Nick

thats great news having family who live nearby should make life easier , I go down 2 days before the op as I go in the hospital the day before for all pre checks etc so am booked in a hotel that is virtually next door , I am then in hospital for 2 nights, we have 2 lads at home and my wife isn’t also that confident on driving in London so a friend is taking me and he will stay in the hotel then bring me back home 

good questions on sleeping positions with catheter in , I was wondering the same as I always sleep on my side 

wishing you all the best also mate 

cheers

Nick

User
Posted 07 Aug 2025 at 11:09

I too always sleep on my side and was worried about sleeping with the catheter in and stocked up on books, ipad to watch with headphones and so on, expecting long difficult nights. In the event it was just fine and much easier to adapt than expected. My wife graciously moved to the spare room for a few days to give me freedom to be awake and restless, and the first couple of nights I was anxious about dislodging it somehow but sleep routine returned after a few days. 

 

Good luck.

User
Posted 07 Aug 2025 at 12:36

Hi,

Thanks for the info. Strangely having the catheter is the bit that seems to worry me the most so it's really good to know that it probably isn't as bad as I have been imagining.

Thanks

Nick.

User
Posted 07 Aug 2025 at 16:00

I found sleeping on my side was impossible due to the pain from the surgery but not the catheter. The night bag plugs into the bottom of the day bag and has enough tube on it that allows for a bit of space when in bed. To be totally honest, I tended to sleep in the living room on a reclining sofa as found it more comfortable

Dave

User
Posted 07 Aug 2025 at 18:02

Best of luck. My husband was also under London Bridge although had his surgery at guys. We stayed in London for 3 weeks (from Manchester) as it was over Christmas & New Year so we didn’t want the Christmas hassle at home. He slept on his side and overall the catheter he didn’t find too bad, ended having to keep his in for 4 weeks aswell and back and forth to London with it in which we hoped to avoid but was fine 👍

User
Posted 07 Aug 2025 at 18:47

Hi Elaine,

Thanks very much. That's quite a trek from Manchester, and over the Christmas period too! I'm feeling really quite heartened to hear that most people didn't find the catheter too dreadful although 4 weeks does sound like a long time - I'm hoping mine will be removed in the 7 days that the hospital predicted but I guess we'll see.

Hopefully your husband is fully recovered now.

Thanks

Nick.

User
Posted 07 Aug 2025 at 20:03

Thanks Nick.

Yes we became desperate for a date and we were offered 21st December so grabbed it. Yes I think most it’s just a week with the catheter, he had a very slight leak apparently so as a precaution they kept it in. I remember Christmas Day it became a bit blocked with little blood clots so I was panicking a little but did lots of manoeuvring and squeezing the pipe and it unblocked. Also got lots of help from this forum.

Rob did have a recurrence, however we went into the op knowing it had already spread to his lymph node, although they removed 14 of them we assume it must have escaped somewhere else too. He had RT and HT which is just finishing but psa rising slightly. We have a scheduled appointment coming up but I think it will just be monitoring for now. 

Best wishes for the op, if it’s anything like Rob’s experience (as in the operation and recovery) then you will be just fine 👍

User
Posted 08 Aug 2025 at 12:12

Hi Elaine,

Thanks very much for your kind words, they are very much appreciated.

I'm sorry to hear that you and Rob have had a difficult time but hopefully you'll get some better news at the next appointment 🤞.

Your Christmas day panic is the sort of thing that my wife is absolutely dreading, she's very worried that she'll need to react to some emergency without knowing what to do! I'll remember that tip for clearing the pipe. Luckily we'll be staying close to the hospital so hopefully if we have any significant issues they will be close at hand.

I think the whole process is extremely stressful for partners, my wife is definitely feeling the strain as she is trying sort every detail out to the nth degree which is quite a difficult task.  It's easy to forget that we're both going through this difficult time but her support is incredible and makes a huge difference.  This forum definitely helps practically, mentally and can put things into perspective.

All the best and I really hope that you and Rob get some good news soon.

Thanks

Nick.

 

User
Posted 08 Aug 2025 at 16:28

Hi all.  12 days to go before my op and full of trepidation.  I’ve started ruminating about the post op app that deals with the examining of the prostrate after it’s out although a while ago I would have been happy to be at this stage !!   I realise there are issues  with ops but I seem to be imagining all the bad things.  It’s funny what your mind does.    My pca is on the tz zone.   Anyone else had it there as I know it’s not as common as other places.   Cheers all.  Simon 

User
Posted 08 Aug 2025 at 17:56

Originally Posted by: Online Community Member
 My pca is on the tz zone.  

Hi Simon.

Mine was in all zones, front and back, top and bottom and had even decided to pop out of the prostate to have a stroll elsewhere.😁

Honestly mate, I don't think it matters a great deal what zone it's in, so long as it's fully cut out or zapped. 

Good luck with the op. I found it a doddle. The wait to see if he had done a thorough job was the hardest bit. 👍

Edited by member 08 Aug 2025 at 17:59  | Reason: Additional text

User
Posted 08 Aug 2025 at 19:30

Cheers Adrian.   

User
Posted 10 Aug 2025 at 01:17

Hi Nick, I’m 71 and am just 16 days post-RP. This is my first post on here and hopefully my experience might help you prepare for your op.

I had my (salvage, robotic) surgery at Guys but live near Birmingham and although the journey home on day 2 was daunting I’m fortunate that my wife and daughter came and drove me home without incident. 

This was my fourth - hopefully last - experience of a catheter. Mostly I find them a little uncomfortable, but rarely painful, and the 12 days (in my case) went OK, with no UTI’s. I could sleep on my back or either side and the night bag has enough tube to accommodate any position. The idea of a bedside bucket is a good one although I never had a problem just laying the bag on the floor. I did buy a piece of rigid waterproof sheeting from a builders merchant and cut it to fit by the bed as a precaution but it was never needed. The Prostate CNS’s at Guys have the best advice I’ve seen on managing your catheter, and what to expect right through from surgery to post-op consultation. If you can’t access it online I may be able to share a link.
I have had no pain from my prostate area and the 6 surgery ‘keyholes’ have all healed well, with just minor discomfort for the first day or two. Today just one still aches a little but it’s not bad enough for painkillers. The ‘wind aches’ from the CO2 they pump into you were also much less than I expected and were gone in about 36 hours.
You might find a tightly rolled up towel helpful if you need to cough or sneeze in the early days - just hold it tightly to your abdomen.
On nurse recommendation I took paracetamol 4 times a day for the first 4 or 5 days but I don’t really think I needed them beyond day 2. If not supplied to you I would recommend getting some lactulose and some sennaside tablets. It was 4 days before I opened my bowels and these helped keep things soft so you don’t need to strain! Just be patient and things will happen in their own time!

The day my catheter was removed, day 12, I leaked like a sieve and had no control. Make sure you have big absorbent pads for the first few days. Since then each day has been a little better than the one before and I feel I’m making OK progress, although I still have a way to go until I’m dry. Night time is the best time for dryness and I've slept well, with no bed-wetting. There is Life-after-Catheter too: on Day 14 I went for a 50-minute, 5500 step-stroll and today, day 16, we’ve been out for a Cream Tea!!
The Kegel pelvic floor exercises seem to make a huge difference to continence and if you’re not already doing them it will really help if you start at once and get into the habit. Get the ‘Squeezy’ app for your phone! You can’t do them while you have the catheter.

A few days ago my surgeon called to confirm the pathology report showed all margins were clear, so I’m hoping from here things will continue positively.

I do hope your op goes well and that the above is helpful. If you have any questions at all please just ask.

Edited by member 10 Aug 2025 at 01:23  | Reason: Not specified

User
Posted 10 Aug 2025 at 10:26

Hi Patrick 

very informative post , got to say I’m dreading the catheter 

I see you had your surgery at Guys I’m at London Bridge which I think is part of the same hospital and will also be driving out , I’m near Stratford upon Avon so not a million miles away from you , how did you find the journey part getting out of London, traffic etc ,did it take long ?

hope things consume for you positively 👍

 

User
Posted 10 Aug 2025 at 11:11

Hi Patrick,

Thanks very much for taking the time to post your incredibly informative note and I'm really glad to hear that things are looking good for you.  It must feel good to be out and about getting some good walks in and even a cream tea!

I'll have a look around to see if I can access the Guys Prostate CNS's catheter advice as it sounds really useful.  You mention all the things that are concerning me most.  The catheter still feels, at this stage, like the worst part of the whole process and any UTIs that may come about.  It's really reassuring to hear that it probably isn't as bad as I'm imagining and I'm almost certainly focussing too much on it.  I'm also imagining that I'll wake up with a distended stomach from the CO2 they pump into you but it sounds from your comments that it isn't too uncomfortable (my daughter asked me how the CO2 comes out again!).  

I'm looking forward to being on the other side of the operation but then of course comes the next major milestone: TWOC day!  When you say you leaked like a sieve does that mean it's a constant slow flow or something else?  I'm imagining having the same issue but it's hard, at this stage, to imagine what it's like.  I do have the Squeezy App and will have been using it for 3 months prior to the Op which hill hopefully help but I guess I'll find out in due course.

Once again Patrick, thanks very much for all the information, advice and tips they are invaluable and I hope your recovery continues at pace.

Nick.

User
Posted 10 Aug 2025 at 11:54

Hi Nick,

Your wife sounds just like me! I think doing and organising everything though makes us feel less helpless in a situation that is mainly out of our control. I fell apart before diagnosis when we thought it had spread everywhere but focussing on getting him better definitely brought me round.

I phoned the hospital ward on Christmas Day as we were staying 15 mins away, they were happy for us to go back but luckily it cleared so didn’t have to. I’m sure everything will be just fine. Everyone is so different so it’s so hard to know how it will go, I think I prepared us for the worst and luckily it was nowhere near that. Robs catheter removal was fine. We went back to London (as it was 4 weeks later) and stayed in a hotel. I was panicking with puppy pads and sheets on the bed etc but he was completely dry through the night. We even went out for dinner and he felt the need to go to the toilet which was good and at most had a few dribbles.

Thank you for your best wishes for Rob too. Yes we would have preferred things to be different, but we’ve been very lucky that he has taken each step in his stride and just got on with it. We’ve had an incredible 4 years since diagnosis with so many good times and adventures. Hopefully we can just keep doing the same. 

Take care and please keep us posted on how you’re getting on.

Best wishes

Elaine

User
Posted 10 Aug 2025 at 12:16

Hi Elane different Nick here but just seen your post to say that Rob had to have salvage RT in the end sorry to hear that but hope all Has now been treated successfully and you can both hopfully put it behind you , last night I was reading some very old threads on here of Jeremeys and Benchmark prostatectomy stories where I think you had commented and Rob had the same surgeon , am I correct , MR C  out of LB or Royal Marsden , if so he is my surgeon also ?

all the best

Nick

User
Posted 11 Aug 2025 at 00:14

Hi Nick,

Yes I definitely think it is the same surgeon. I think you are in very safe hands. It might seem that because Rob wasn’t cured we might think different, however rob’s cancer had already spread to his lymph nodes and he made it very clear that adjuvant therapy would be needed. We just hoped for a miracle!

Our life literally changed from meeting him, the positivity he gave my husband was second to none and allowed us to live an amazing life. I still update him four years on and he still responds! For me it’s priceless !

Really wishing you all the very best for your op.

Elaine

User
Posted 11 Aug 2025 at 08:15

Hi.

I was totally paranoid about the catheter when I had my op lasy July. It won't fall out and you will find it ok sleeping on your back for a few days, I slept slightly propped up in a few pillows  which stopped me rolling. Emptying the bag is fairly easy as you just walk to the loo and you can drain it through a tap at the bottom, a bit like peeing normally. The night time bigger bags are great use. I found it better if your partner can change them out in the morning.

You will need to drink a lot so you will be producing more pee than you wiould think normal, just keep an eye on it. Also don't worry about the blood had me freaked out for a bit, it does clear. Oh and I remember sneezing once and blood comming out around the Catheter at the tip of my penus, apparently it happens, no one told me first. The big thing is never panic about the gross things, you can always ring your urology department and nothing is too small or 'daft' as far as they are concerned.

Plenty of Kegal exercises before the op if you still have time (though to be honest I didn't to that many), then after the op you cant do any untill after the Catheter is out, but work it as soon as you can after it's out. Hopefully you have the Squeezy App on your phone already. I started 3 times a day got it to 10 second sets, then I ran into a phisio who'd had the same and he got me onto 6 times a day at about 3 weeks post op. Made a huge difference. Now I only have issues if I cough uncontrollably.

Oh, One last thing after the cathater is removed you don't have any controll for a bit. I had a 1.5 hour drive home from the hospital and had to change the pads they give 4 times. So make sure you have them with you. As you won't be driving have someone that can make diversions if needed. Take some food waste bags (opaque 10L are plenty big enough) because men's public toilets don't always have bins that you can use and you may have to carry it out the loo to a normal waste bin somewhare. If you have it all tied up in one of those it's less awkward for you.

Good luck, Hope you do well. I managed to interval the GNR 10 weeks post op (My surgeon thinks I was pushing it as he said he expected me to have walked it) It is a struggle post op, but stick with it and fight on, never give up.

Edited by member 11 Aug 2025 at 08:20  | Reason: Not specified

User
Posted 11 Aug 2025 at 08:28

Hi Again

Also for the hospital  I reccomend You make sure you have your phone charger and a good head set.  I also recommend audiable app and BBC iPlayer as I found it increadibly hard to stay focused enough to read. But you can drift in and out while someone reads to you, it's quite reassuring.

User
Posted 11 Aug 2025 at 08:59

Hi Elane 

thanks for the reply that is lovely to hear , he does come across that way , very calm and reassuring which is exactly what you need in this situation 

thanks for the well wishes and wishing you and Rob all the very best also 

Nick 

 

User
Posted 11 Aug 2025 at 09:26

Hi Elaine,

You and Carole sound just the same. I think you're right, the organising is all about gaining some order in a situation that is mostly out of our control.  It's incredibly helpful that one of us is thinking about all the other things that need to be organised as it's generally the detail that makes the difference.

At this stage it's hard to imagine life past the Operation so It's really great to hear that you've had a fabulous  4 years since the diagnosis and continue to do so. 

I'll certainly keep you updated with my progress along this strange path and thankyou for your words of support, they make a difference.

Best Wishes

Nick.

User
Posted 11 Aug 2025 at 11:07

Hi Green Man,

Thanks very much for the post and all the incredibly useful information.  It's really helpful to hear about other people's real life experiences.  As I'm sure I've mentioned, having the catheter in feels like it will be the worst part of the process which I guess can't really true but it is the part that plays on the mind.

I've been busy with the Squeezy App for a while now and have it set to 5 times a day, I think I'll take your advice and increase it to 6 for the final 3 weeks. I do like the idea of listening to plays or podcasts so will definitely make sure that I take some headphones and a charger (great tip).

I'm a bit concerned about the trip home post TWOC as it is a 2.5 hour drive with my son in Law (in his new car!).  I'll be taking plenty of pads and a waterproof car seat cover which will hopefully save too much embarrassment.

I didn't understand your 'interval GNR 10 weeks post op' comment - it's probably something I should know?

Thanks again for your post, it's really helpful.

Nick.

 
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