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After the R.P - advice and tips please

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User
Posted 25 Oct 2019 at 08:40

My  husband had his RP yesterday and everything went well according to his amazing Surgeon- the cells  they sampled whilst he was on the table were clear of cancer which was a great relief and we’ve just got the wait for the rest of the Prostate next month. So I was just wondering if any of you wonderful people have any tips and advice for my husband  in the next few weeks. We’re travelling home by train on Sunday so I’m a bit worried about the two and a half hour journey. Latest update - he was fine this am and was up and walking a but when

physio visited and

he lay flat  the pain increased ten fold I think due to excess gas  

Edited by member 25 Oct 2019 at 14:10  | Reason: Update

User
Posted 27 Oct 2019 at 21:21

Well we made it home on the train which was wonderful. I’d organised Assistance at Euston station which was brilliant and I’d recommend it. A nice little journey on a buggy to the platform help loading the cases on board and all before everyone else arrived. Next worry is the fact that there’s been no bowel movement since Wednesday ( op was Thursday) he does tend to suffer from constipation anyway but he’s decided to take three Movicol instead of two during the day and stop the codeine to try and encourage movement. We so appreciate everyone’s advice and as I keep telling my husband ‘just wait  I’ll ask my Prostate friends for advice ‘ 🤔

Edited by member 27 Oct 2019 at 21:25  | Reason: Update

User
Posted 28 Oct 2019 at 04:13

His bowels will have been extensively rearranged by Da Vinci and his robotic arms to get to his target, and then just piled back into place. Peristaltic bowel action will have been disrupted, and it will just take time - and movements - to get his bowels back where they should be.

You might want to nip to the chemist’s today and buy some Fybogel sachets (isphagula husk), roughage in an orange drink. They gave me some when I was discharged, together with senna tabs, but I didn’t need them.

Cheers, John.

Edited by member 28 Oct 2019 at 04:17  | Reason: Not specified

User
Posted 28 Oct 2019 at 10:42

Hi Everybody,

It’s Girlygirl’s OH - Marky Mark aka The Shadow.  Thanks for all the advice. I had been avoiding my diagnosis up to the last minute as work dominates my life. However I had spent enough time to consider and review my options and knew RP was the best option for me. This will explain  total radio silence from me personally and OH has been my PA, Advisor, and Superstar Wife.

Happy to share advice and experiences with you guys and anybody else that finds themselves living with or newly diagnosed with PC. I am day 4 post op and heading out for a walk today in the lovely Lancashire sunshine. 

Best wishes

User
Posted 03 Nov 2019 at 17:58
Ok I get it !! It’s very soon to assess continence tbh. But normally if you are one of the lucky ones ( like myself ) it was quite instant , but still say one pad a day for 3 months. And in reality a pad could last 3 days if I’m honest. Just take things easy for a few weeks. In my case I think beer ( not too much ) was better than anything else except water lol. It’s good to keep as much flushing through as possible. My wife was really understanding and for a while we used the big absorbent pads under the bed sheet. It took all the worry away tbh.
User
Posted 05 Nov 2019 at 22:53

Hi grant60 and tech guy 

I had my Retzius sparing RARP on 24th October around 9am. Day of Op I was pretty nervous but put at ease by the surgeon.

Post Op.Day 1 Abdomen was really sore but this was to be expected. Worst bit was the trapped gas which was very painful in back shoulders and chest. Day 2. I was fairly mobile and discharged from hospital with suprapubic Catheter I’ve been Taking the painkillers as advised. 

Day 4- finally first bowel movement which was a great relief ( take plenty of Movicol to help this) 

Everyday thereafter I’ve had continued improvement and have been active playing my guitar “badly” and taking gentle walks and cooking. Days 9 and 10 managed a walk each day of around  5k, albeit suffered leakage as I had clamped off catheter and peeing normally through the old fella. Day 11 had Catheter removed- huge relief   Day 12 today (5th November)went back to work for 5 hours. 

I am not 100% but considering what I’ve been through I am happy with progress. Remember the pain in the first 48 hours you soon forget. It’s a moment in time but it is purgatory whilst it lasts. But listen to your body if you are tired rest, sleep and eat well. I have no regrets choosing RRAP over Radiotherapy. Very best of luck. Marky Mark aka The Shadow.

 

 

Good luck and best wishes

 

 

 

User
Posted 25 Oct 2019 at 08:40

My  husband had his RP yesterday and everything went well according to his amazing Surgeon- the cells  they sampled whilst he was on the table were clear of cancer which was a great relief and we’ve just got the wait for the rest of the Prostate next month. So I was just wondering if any of you wonderful people have any tips and advice for my husband  in the next few weeks. We’re travelling home by train on Sunday so I’m a bit worried about the two and a half hour journey. Latest update - he was fine this am and was up and walking a but when

physio visited and

he lay flat  the pain increased ten fold I think due to excess gas  

Edited by member 25 Oct 2019 at 14:10  | Reason: Update

User
Posted 25 Oct 2019 at 16:02
Just have to wait it out, I'm afraid. The gas will work its way out over the next couple of weeks.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Oct 2019 at 16:57

The pain should subside in a couple of days. For me, rotating the arm slowly at the shoulder whilst pressing the opposing hand underneath the armpit seemed to work.

Flexi

User
Posted 25 Oct 2019 at 19:54
The shoulder pain is common (but not in my case) because you are upended like a bat during surgery so that the perineum and abdomen can be easily accessed.

The bloating is due to the belly being inflated with gas to provide what they call a “cathedral“ operating space for the robotic arms, and then his bowels will have been mucked around and will take time to sort themselves out.

Buy a waterproof mattress protector (eg Dunelm Mills) for the inevitable accident.

Best of luck with his recovery.

Cheers, John.

User
Posted 26 Oct 2019 at 09:54
Maybe not but they really should! Not doing so is cruelty. Get your own if they don’t provide them.

2.5 hour train journey is not ideal but I suspect much better than 3.5 hours by car with the first hour on London “roads”. Very unpleasant experience that was.

Baggy jogging bottoms advice is spot-on, As is the advice to take advantage of every pit stop whether the bag is full or not.

As others have said, the shoulder pain is trapped gas and can quite severe. Mine only lasted about a day and wasn’t continuous.

A catheter bag that looks like tomato juice isn’t normal either - though certain private hospitals might tell it is.....

Very best wishes for a smooth, trouble-free journey

Nick

User
Posted 26 Oct 2019 at 10:45

Hope your hubby makes a fast recovery.

Will be having the op hopefully just before Xmas so just sharing some of my prep ideas.

From a diet perspective seeing there can be issues with constipation I’d tend to lean towards a diet of fresh steamed veg and 2 pieces of fruit a day. Maybe some nuts/seeds for breakfast with a banana. I suffer from IBS-C so diet is something I’ve worked with to evade lack of peristalsis for 20+ years. Chick peas and lentils also excellent to keep things flowing.

How is the hospital food? I stayed in Princess Grace in sept for biopsy. It was similar to say business class airline food in my view. Good but some fresh additions from a local Waitrose might mitigate any potential problems with constipation. 

User
Posted 26 Oct 2019 at 18:08

Thank you everyone- some great pieces of advice which I will make sure he follows. I’ve arranged for assistance at the train station and today the shoulder pain has eased and he’s feeling a lot better. He particularly liked the advice of no hoovering 😉 

 

User
Posted 27 Oct 2019 at 08:31

Catheter removal took two minutes by a urology nurse at my local hospital.

Then they insisted I wait for an hour to test if I was urinating normally. Don’t think the powers that be there realised I had had a supra-pubic catheter, not a tube rammed down my pipe! I couldn’t wee after an hour as I had already been just before, so I discharged myself (again).

A quick visit to the pub soon got everything working again, stop-start more or less OK, no sensation of pissing razor blades.

Cheers, John

Edited by member 27 Oct 2019 at 08:45  | Reason: Not specified

User
Posted 27 Oct 2019 at 10:44

GirlyG

If your OH does have a SPC then John's comments are relevant. If he has a urethral catheter then it is important that it is done in a  urology environment. If the twoc fails and a new catheter has to be re- inserted it needs to be done by someone who understands the risks. My urethral catheter got stuck coming out and was "tugged" out by a senior nurse and I haved suffered the consequences ever since. There is a saying used on here "do not let any Tom dick or Harry change your urtheral catheter after RARP" 

The return train journey after removal may be a challenge but better safe than sorry.

Thanks Chris

Edited by member 27 Oct 2019 at 12:30  | Reason: Auto correct

User
Posted 27 Oct 2019 at 22:28
The movicol should do the trick. It’s very common to have bowel discomfort and takes a few days to “restart”.
User
Posted 03 Nov 2019 at 18:37
Caffeine and alcohol are a big no no while trying to restore continence. Drink plenty of water to keep it all nice, fresh and non irritating.
User
Posted 03 Nov 2019 at 19:18

GirlyG

The SPC is also going to have an effect on the bladder and possibly cause spasms. That is when the bladder contracts and you have no control over the bladder, contracting the pelvic floor muscles may stop some of the leak, but I find it is more comfortable to let it leak. 

Thanks Chris

User
Posted 04 Nov 2019 at 19:17
I found the SPC very irritating once It was clamped off and the bladder started cycling again. Mostly it made me think I needed to go all the time but continence wasn’t actually affected.

Getting it out was huge relief, but then it had been in 28 days by then......

User
Posted 11 Nov 2019 at 06:11

Originally Posted by: Online Community Member

Also for information my wife ordered a prostate card from this site which gives you access to disabled toilets  ( credit card size and says you need quick access to toilet ) we think that this will be helpful as disabled toilets  have disposal bins for the tena pads which ordinary male toilets lack! 

You can buy Radar keys for ‘disabled’ toilets from eBay for about three quid, not that I was in need of one after about three weeks post-op.

Cheers, John.

User
Posted 11 Nov 2019 at 20:13

Hi Mark

Ive been busy making a list when reading feedback on here and talking to peeps in a local support group. Bed and duvet protector just added to it :-)

will start to stock up on paracetamol/ibuprofen. Better to have too much I guess. 

totally on the tens front. Just bought one pack as figured will play that by ear as they are just a click away from delivery online.

hope Friday goes well and histology is what you expect. Please let us know how it goes too.

best

simon

 

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User
Posted 25 Oct 2019 at 15:37

Hi there,

re. the traveling home I would advise....

1) Plan every step of the journey - give yourselves plenty of time.

2) Make sure husband is wearing comfortable clothes when he leaves hospital. Baggy jogging bottoms are ideal.

3) Make sure the catheter bag is as empty as possible before leaving the hospital

4) Use the facilities at the station - if need be before boarding the train

5) Book / get a seat close to the on-board facilities - just in cased you need them.

Your husband, if like me, won't have a lot of energy to do much else on the day.

Once home - REST! No bending, no lifting etc. Then gradually just "potter about", but don't over do things. Once his energy returns then some gentle short walks to build up strength.

Flexi

 

User
Posted 25 Oct 2019 at 15:44

Hi Flexi 

thanks for that we’ll follow all your advice. 

 

User
Posted 25 Oct 2019 at 15:47

Any advice regarding the awful chest and shoulder pains which appear to be worse when he walks ? 

User
Posted 25 Oct 2019 at 16:02
Just have to wait it out, I'm afraid. The gas will work its way out over the next couple of weeks.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Oct 2019 at 16:57

The pain should subside in a couple of days. For me, rotating the arm slowly at the shoulder whilst pressing the opposing hand underneath the armpit seemed to work.

Flexi

User
Posted 25 Oct 2019 at 19:54
The shoulder pain is common (but not in my case) because you are upended like a bat during surgery so that the perineum and abdomen can be easily accessed.

The bloating is due to the belly being inflated with gas to provide what they call a “cathedral“ operating space for the robotic arms, and then his bowels will have been mucked around and will take time to sort themselves out.

Buy a waterproof mattress protector (eg Dunelm Mills) for the inevitable accident.

Best of luck with his recovery.

Cheers, John.

User
Posted 25 Oct 2019 at 20:54

GirlyG

Take it easy but not too easy. Don't get constipation and no straining when passing motions. Drink plenty and make the most of having a catheter, it saves getting up at night. Get some instilagel or hydrocaine just in case the catheter makes the end of the penis sore.

Thanks Chris

Edited by member 25 Oct 2019 at 20:55  | Reason: Added a line

User
Posted 25 Oct 2019 at 21:29

Sorry to hear of the longish train journey. However when you get home. As Bollinger said - Mattress Protector will be YOUR favourite. There will be accidents to start with. Also a bucket to use at night as an extension to the catheter & bag. They will give him some laxatives to go home with. Use them if he is firm and regular - he may be a couple of days in bed. Then gentle walking around the house and outside if suitable for you guys. Tracksuits best for the bag etc. No lifting, straining, hoovering-sorry, anything really for 6 weeks is the advice. Your Surgeon will not thank you if he is readmitted Hernia Style. Catheter out after a week or so - I am sorry to say that this initial period can be worrying at 1st but is easily achievable.

 

All the best

User
Posted 26 Oct 2019 at 01:36

*They may give him laxatives to go home with ... not all hospitals do this.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Oct 2019 at 09:54
Maybe not but they really should! Not doing so is cruelty. Get your own if they don’t provide them.

2.5 hour train journey is not ideal but I suspect much better than 3.5 hours by car with the first hour on London “roads”. Very unpleasant experience that was.

Baggy jogging bottoms advice is spot-on, As is the advice to take advantage of every pit stop whether the bag is full or not.

As others have said, the shoulder pain is trapped gas and can quite severe. Mine only lasted about a day and wasn’t continuous.

A catheter bag that looks like tomato juice isn’t normal either - though certain private hospitals might tell it is.....

Very best wishes for a smooth, trouble-free journey

Nick

User
Posted 26 Oct 2019 at 10:45

Hope your hubby makes a fast recovery.

Will be having the op hopefully just before Xmas so just sharing some of my prep ideas.

From a diet perspective seeing there can be issues with constipation I’d tend to lean towards a diet of fresh steamed veg and 2 pieces of fruit a day. Maybe some nuts/seeds for breakfast with a banana. I suffer from IBS-C so diet is something I’ve worked with to evade lack of peristalsis for 20+ years. Chick peas and lentils also excellent to keep things flowing.

How is the hospital food? I stayed in Princess Grace in sept for biopsy. It was similar to say business class airline food in my view. Good but some fresh additions from a local Waitrose might mitigate any potential problems with constipation. 

User
Posted 26 Oct 2019 at 18:08

Thank you everyone- some great pieces of advice which I will make sure he follows. I’ve arranged for assistance at the train station and today the shoulder pain has eased and he’s feeling a lot better. He particularly liked the advice of no hoovering 😉 

 

User
Posted 26 Oct 2019 at 18:11

Pint glass maybe heavy. Medium glass of Savignon Blanc is rumoured to be an excellent analgesic 🤔

User
Posted 26 Oct 2019 at 18:25

Tech Guy 

Never mind my Hubbie needing analgesic it’s me who’s hitting the wine! 

User
Posted 26 Oct 2019 at 19:21

GirlyG

Make sure you have enough catheter bags and straps etc, leg bags are normally changed after 5 -7 days so make sure you have enough for the change and perhaps a spare. A spare thigh strap is useful for when he showers.  A drainable night bag is supposed to be okay for seven days in the home environment. Don't let the night bag sit on the floor or in the bottom of a bucket it should be hung from the top, that is how they are designed.  The night bag is "usually " attached to the spout of the leg / day bag, and removed in the morning or whenever he gets up and about. Leg / day bags stay attached for the 5-7 days. Frequent removal of the leg bag from the catheter can increase the risk of infection. Having said all that your medical team are the people to listen to, but as you are no doubt finding out there is alot to take in, especially if you have a hangover 😀.

Is the catheter removal and TWOC being done at his current hospital or closer to your home.

Thanks Chris

 

Edited by member 26 Oct 2019 at 19:22  | Reason: Typo

User
Posted 26 Oct 2019 at 19:52
Hi Chris

Thanks that’s really useful info as tonight is our first night alone with no medical help. We’re in a hotel tonight and head home on train tomorrow. Supposed to have catheter removed here in London a week on Monday but wondering if it’s easier to have it removed at home? Will have to take advice. Hubby feeling a bit overwhelmed and battered as lots of information.

All advice is welcome. 😊

User
Posted 27 Oct 2019 at 08:31

Catheter removal took two minutes by a urology nurse at my local hospital.

Then they insisted I wait for an hour to test if I was urinating normally. Don’t think the powers that be there realised I had had a supra-pubic catheter, not a tube rammed down my pipe! I couldn’t wee after an hour as I had already been just before, so I discharged myself (again).

A quick visit to the pub soon got everything working again, stop-start more or less OK, no sensation of pissing razor blades.

Cheers, John

Edited by member 27 Oct 2019 at 08:45  | Reason: Not specified

User
Posted 27 Oct 2019 at 10:44

GirlyG

If your OH does have a SPC then John's comments are relevant. If he has a urethral catheter then it is important that it is done in a  urology environment. If the twoc fails and a new catheter has to be re- inserted it needs to be done by someone who understands the risks. My urethral catheter got stuck coming out and was "tugged" out by a senior nurse and I haved suffered the consequences ever since. There is a saying used on here "do not let any Tom dick or Harry change your urtheral catheter after RARP" 

The return train journey after removal may be a challenge but better safe than sorry.

Thanks Chris

Edited by member 27 Oct 2019 at 12:30  | Reason: Auto correct

User
Posted 27 Oct 2019 at 21:21

Well we made it home on the train which was wonderful. I’d organised Assistance at Euston station which was brilliant and I’d recommend it. A nice little journey on a buggy to the platform help loading the cases on board and all before everyone else arrived. Next worry is the fact that there’s been no bowel movement since Wednesday ( op was Thursday) he does tend to suffer from constipation anyway but he’s decided to take three Movicol instead of two during the day and stop the codeine to try and encourage movement. We so appreciate everyone’s advice and as I keep telling my husband ‘just wait  I’ll ask my Prostate friends for advice ‘ 🤔

Edited by member 27 Oct 2019 at 21:25  | Reason: Update

 
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