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What to buy in preparation for RARP

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User

Posted 10 Aug 2025 at 11:26

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 12:11

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 12:54

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 13:16

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 01:14

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 09:15

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 09:20 | Reason: Not specified

User

Posted 11 Aug 2025 at 09:28

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 09:59

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 10:26

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 12:07

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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