Age 53,about to have RRP 7 November. What's it going to be like?

User

Posted 04 Oct 2018 at 06:40

Hi All

so I'm about to have a radical robotic prostatectomy on 7 November. Since being diagnosed a month ago, have been on quite a voyage of discovery, much helped by all you kind folk on here

am now turning my mind to what happens next, after surgery. I am using the time until the op to build up my fitness with a mixture of gym, mountain biking and yoga. oh, and pelvic floors of course!

I appreciate it's different for everyone, but what's it going to be like? How soon will I be back up and running, so to speak?

Be good to hear how it was from others, and any good tips or tricks that worked for you.

many thanks

Geoff

User

Posted 04 Oct 2018 at 14:33

Hi Geoff,

I've recently had RRP and I have to say it has not been as bad as I was expecting. The first night in hospital was uncomfortable and I would try and get some idea how long they are going to keep you in as I was told 1 night by someone and then 3-4 nights by someone else! (I was only in 1 night.)

Be prepared for where you are going to sleep when you are discharged - I couldn't lie down flat on a bed so slept on the settee (and stil do) so maybe think about setting that up and having everything ready. I also use a mattress protector on the settee as well (plus I have a couple for the bed for when my catheter is removed in a few days.)

I came off the pain killers a couple of days after discharge and was fine - this allowed my bowels to "open" - I then just took ibuprofen.

You will probably be on injections for 30 days to prevent blood clots. These are a bit of a pain but I have found that warming up the Dalteparin to body temperature before injection has helped - also pinching the skin as advised in the booklet helps a lot and keep hold of the "pinch" whilst injecting and removing the needle (again as advised in the booklet I was given) - and don't inject too close to any stitched areas in your stomach!

The catheter is the biggest problem - I am a little sore and have just got some Instillagel (although I only have a few days left I may as well use it now) but no-one on the ward told me about this. I found wearing the bag around my shin was better for sleeping (I wear it on the inside of my shin during the day and turn it onto my front shin for the night time) although this made it a little more difficult for emptying as you have to bend down more to undo the lower strap to lift the bag.

I also got some bleach free cleaning wipes and everytime I empty my "bag" I wipe out the inside of the nozzle. It's worth keeping the grey cap that comes with the day bag so that you can push it onto bottom of the bag nozzle after emptying.

I have been suprised how quickly I was up and about. The next day after surgery I was walking about but certainly within 2-3 days I was able to walk in the garden - the main problem was the catheter slowing me down (which is maybe a good thing). After 12 days I am twiddling my thumbs and feel that if the catheter was out then I could walk to shops quite easily.

Hope it all goes okay - preparation certainly makes things more comfortable afterwards; just try and avoid the tempatation to scratch your legs due to those stockings that you're gonna have to wear for a month as you will not stop!

User

Posted 04 Oct 2018 at 23:25

Re the boxer shorts thing. Many men have very swollen testicles and sometimes the penis as well so it is a good idea to buy a couple of pairs of proper pants one size larger than you usually wear - these will support your testicles and hold the catheter in place better than boxers would.

Other shopping list items often recommended include:
- a bucket to stand the night bag in
- tracksuit bottoms / joggers preferably with a drawstring waist rather than elastic and in a dark colour (M&S do some reasonably priced ones)
- a waterproof sheet or some of those disposable pet pads for when the catheter comes out
- a couple of boxes of Tena for Men pads or similar (Morrisons, Asda etc often do offers on these but make sure you get the men's ones rather than women's - it is marked on the box) OR check with your local GP practice / hospital whether pads are provided free in your area

If not already done so, have you applied for your prescription charge exemption certificate?

Also worth noting that not all men have to do the self-injecting - it seems to be a bit of a postcode lottery - and not all men have to wear the stockings after they come home from hospital.

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

User

Posted 05 Oct 2018 at 00:41

Well, Geoff, you know you are going to the right place, but the point about earplugs is correct.

I had no pain when I woke up and frankly, hardly any afterwards. A few paracetamol, which are rubbish anyway, was all I needed.

However, on the ward, there was a knobhead who looked like Catweazle opposite me, who had his telly on without wearing the headphones at three in the morning! Moreover, there was what sounded like a mobile phone ringing on the ward every few minutes.

I asked the night sister for earplugs which she kindly provided. Next day, I asked the other four men on the ward (Catweazle was a recluse behind his curtains, except when he regularly went outside for a fag), “Whose mobile was that last night?”

It transpired it was the nurse alarm - the red button next to the bed - being triggered. But it rings out on every ward on the floor, and they didn’t seem too keen to answer it and turn the bloody thing off!

The next night, equipped with my earplugs, for the first time in my 62 years I requested a sleeping pill, and had a great night’s sleep. Oh, and Sister gave Catweazle a bollocking about his inconsiderate TV use.

As I have said here before, I have found the whole minimally invasive surgery thing a breeze, and I have had worse pain from a sore throat.

Cheers, John.

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User

Posted 04 Oct 2018 at 11:38

Hi Geoff.

like many say, sorry you have to join us.

I can't answer for Robotic RP as I had LRP, as for what it was like, I was only in hospital for one night, I had a wander around the ward area about 5 hours after waking up, a few issues during the night with the catheter getting blocked once, but that was dealt with really quickly, I walked down to meet my wife in the car park without any problems apart from being a little tender and walking in hunched and slow way.

The catheter was my only real problem for the 15 days it was in, instillagel sorted most of the pain and discomfort (ask for some at the hospital) or it is available form chemists) since it's removal I have come on very well, continence is all but back to normal, just wait for the ED to sort it's self out!

If it continues to improve as it is, I hope to return to work on Monday, so that will be 5 weeks after surgery.

Keep doing what you are doing exercise wise, it certainly helped me, at least I think it did!

Any way all the best with it, stay as positive as possible, hard at times but it helps, one more tip, if you want decent decafe tea find Thompsons Tea online, it's the only one I have found that actually tastes like tea!

User

Posted 04 Oct 2018 at 14:28

Blighty

Thank you for your message, I'll bear that lot in mind. glad it seems to be working out for you. It is quite a voyage of discovery. Can't pretend to be looking forward to it, but at the same time want it done.

best of luck with your recovery

geoff

User

Posted 04 Oct 2018 at 14:33

Hi Geoff,

I came off the pain killers a couple of days after discharge and was fine - this allowed my bowels to "open" - I then just took ibuprofen.

User

Posted 04 Oct 2018 at 23:10

Hi Geoff,

I too was diagnosed at 53 with PC which came as a shock as I had no symptoms.

Hope everything goes well with your operation as I'm sure it will.

I had a RP in June 2017 and like most on here say, the catheter is probably the worst part. I would recommend using Instillagel. I had the catheter in place for 9 weeks as I had a leak at the bladder neck and had 4 cystograms before I could have it removed. This was quite unusual but you just get on with it. I was worried at first when the urine in the bag was spotted with debris and blood spot etc but this is normal. It is also important not to force when you need a No2. I was put on Laxido to soften stools. I was also concerned that when having a No2 sat on the loo the urine was coming out either side of the catheter and not going into the bag - this is also normal.

I spent only one night in hospital and was sent home the following day complete with a drain from the wound. I had to measure the amount of fluid being discharged from the wound and phone daily to the hospital ward until it was ok to go back and have the drain removed. You probably wont be in a similar situation but if you are it sounds worse than it is.

I did not have much discomfort from the wounds, very little pain.

I managed to sleep comfortably in bed. The hospital issued me with a catheter night bag which holds more fluid than the day one which is attached to your leg. I placed the night bag in a bucket positioned at the side of the bed which worked well.

People recommended wearing loose boxer shorts which I tried for a couple of weeks but when I became more active I found briefs were more comfortable.

If you have to inject yourself don't worry - the needle is so fine it is painless, just pinch the skin and inject into the fat. Don't rub the area after injecting or you will bruise.

After the catheter was removed I was dry within 4 weeks, and ED is still ongoing but getting better.

Best Wishes

Rich

User

Posted 04 Oct 2018 at 23:25

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

User

Posted 04 Oct 2018 at 23:39

Rich hi

Thank you so much, I am oddly comforted by your story. You make it sound eminently do-able. Like you say it probadly sounds worse than it is, and once you're in, you're in. Just go to get on with it.

having said all that, it's not going to the highlight of my year!

thanks, appreciate you taking the time to share

geoff

User

Posted 04 Oct 2018 at 23:43

Lyn, hi

thanks, some gems there that hadn't crossed my mind. Prescription exemption? Didn't know about that one. And the other tips too, really helpful. Gonna have to start a list!

thanks so much

geoff

User

Posted 05 Oct 2018 at 00:04

Anyone diagnosed with cancer is entitled to free prescriptions for 5 years; collect an application form from the chemist and take it to your GP practice to be filled in.

When the 5 years is up, the person can apply for a replacement if they a) still have cancer b) are still having treatment for cancer or c) are having treatment for the side effects of cancer or cancer treatment.

Things like Viagra and Cialis count under c).

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

User

Posted 05 Oct 2018 at 00:08

Hi Geoff, all I can add to the list is that it was noisy at night in hospital and ear plugs on the second night were useful.

I think I was fairly fortunate in that I went to sleep and woke up with no prostate and wouldn't have known they'd done anything, I wasn't that conscious of the catheter. The 5 small wounds in your stomach are sore if you lift something in the first few weeks and if you try to move in certain ways. Dry at night from the start, dripping into the pad without realising when I walked, need to carry a spare pad for a few weeks.

I go to the gym but didn't for about 6 months, I think I started with walks and then some running outside. Cutting through your stomach needs a big heal. As does the sphincter.

User

Posted 05 Oct 2018 at 00:41

User

Posted 05 Oct 2018 at 14:29

HI Geoff,

All the very best with your radical robotic prostatectomy on 7 November.

I had mine a few weeks ago on the 11th September at the wonderful Christie Hospital Manchester and I was very nervous about the OP but so far with only one blip I have been pleased with my recovery. I am 58.

Lyn Eyre makes some great points and I applied via my Doctor yesterday for the Free Prescription Card but did not realise it lasted for 5 years so thanks for that info Lyn

I was in hospital for 2 nights and only took paracetamol as I was luckily not in much pain it was mainly the discomfort of the drain which came out on the second day, the wounds and the Catheter. I got used to the Catheter but it was a relief after 7 days to get it removed and I did feel much better when it was removed . The removal was quick and not painful.

Having Tena Pads is essential and I am using Tena Premium Fit Tena 4 Pants which are great for me.(Tesco,Sainsbury,Asda etc sell them)I am not as incontinent as I thought I would be and maybe doing the pelvic floor exercises twice a day for 2 months before the OP has helped and I had no problems either prior to surgery

I was given Lactulose to help with Constipation which it did but after 2 weeks when it ran out I stopped and a few days later was in quite a lot of discomfort so bought some more from the Chemist which thank fully helped so perhaps I should not have just stopped but done it gradually. I am still taken it and will do so until I get back to "Normal" so may e something to think about.

Everyone is different with regards to going back to work etc depending on the nature of the work and your recovery and how stressful your job is and how confident you are. I know some who go back to work after 4 or 5 weeks and others after 9 or 12 weeks.

We are as you say all different and I can only say so far my experience of robotic surgery has been better than I feared. I was given blood thinning injections for 4 weeks but they were stopped a few days ago when I started to have a bit of blood in my urine. I went to the Doctors for a Urine test and yesterday the Lab report said I had a Common UTI an ECOLI Infection so I am on antibiotics for a week but apart from going o the toilet a lot I do not feel ill or weak

I wish you all the very best with your treatment

Best Wishes

Paul

User

Posted 06 Oct 2018 at 21:01

You’ll find a lot of very useful stuff in all the replies so apologies if I repeat anything. I had the robotic surgery on Tuesday and now back home with the catheter.

The operation time impacts on how long you are under anaesthetic. I was under for about 4.5 hours and was quite nauseous when I came round. I had not eaten very much at all the day before so not disastrous.

The first night must be difficult for everyone. In my case I had a drain in, the catheter and three needles spread across my hands. It’s not particularly comfortable but the main thing, repeated on here many times, is the noise. Most NHS hospitals have a lot going on and it’s not easy to sleep. Take the earplugs suggested and maybe an eye mask.

I was up and about the next morning after the consultation allowed the drain to come out. I went home after two nights. One or two nights is common. It was such a relief to be home and get some sleep.

Lots has been said about the catheter, all useful. The main thing is to try and fix it so the tube doesn’t rub against the head of your penis when walking. I found the calf bag I had in hospital was better for this but the new thigh one (changed for hygiene) has been harder to get to grips with.

I’ve been told to walk as much as possible so popping out to the shops daily, not buying much as lifting is limited and it’s been good to get a change of scene and fresh air.

I was told before the surgery that some patients had been having an allergic reaction to the dressings. Unfortunately I turned out to be one of them and the raw skin left by the blisters is much more sore than the incision points which are really not a problem. I did ask the nurses to check dressings as they were sore but I think it was missed initially. Worth keeping an eye out for.

The whole Urology team have been fantastic and very available for questions.

I’m having my staples and catheter out after 9 days which seems about average.

In my case I hope to know the results of the lymph node biopsy in two weeks.

I’m sure you’re in good hands, the surgery is very common now and the standard of surgery is excellent.

User

Posted 28 Oct 2018 at 14:24

Hi all

Thanks all so much for your replies, really helpful and reassuring. Since my initial diagnosis and getting my surgery booked I've really not had that much time to think, and if I'm honest, have been pushing this to the back of my mind. So apologies for not acknowledging the later replies to this thread.

With surgery just over a week away now, I'm beginning to get my head back into this. Cannot pretend I am not a tad anxious although I guess this is only normal.

Time now to get myself sorted and prepared - armed with all the great information you have given me.

Thanks all, this is very much appreciated

See you on the other side!

G xx

User

Posted 28 Oct 2018 at 15:19

Good luck Geoff.

If not already suggested, purchase some Fibergel. I took it twice a day, one at breakfast and one at dinner, the week before my op'

Although i was given lactulose and senokot after the op it wasn't enough to keep my bowels going. So continued on the fibregel and all is fine.

I purchased some instillagel but didn't need it. The info on here about having a bucket for your night drainage bag was great advise.

All the best

Neil.

User

Posted 28 Oct 2018 at 15:45

"Many men have very swollen testicles." A warning here - swollen may be an understandment. My plums were like coconuts from the CO2 and too well over a week to deflate!! It is a hell of a shock to see if you are not pre-warned. I have it on good account from the nurse that they do not explode :)

Also you may not have been told (quite common not to be told) that your flaccid penis may be shorter after the operation as they resect a length of your urethra as part of removing the prostate which pulls your penis back inside you a bit. Has little effect on erect length for obvious reasons but again, forewarned is forearmed.

Do not half-#### the injections, Dithering makes it worse. Stick it like you mean it!

Expect pink urine and clots for a while after the operation. If it goes on or goes dark, seek advice.

Watch out for the superglue holding your stitches together coming off. Mine did and I needed to keep pads over the wound as a result. Do not glue them back again :)

Finally you may get real or referred pain from the gas that has been pumped inside you. I got a lot in my shoulders. Painkillers are your friend here.

Edited by moderator 28 Oct 2018 at 18:51 | Reason: Not specified

User

Posted 28 Oct 2018 at 16:32

All the very best of luck Geoff, I hope your surgery goes welll. Most people don’t have any major complications but if you feel uneasy about anything at any stage after you wake up on the other side my advice is to ask the urology nurses or consultants. Don’t suffer in silence.

User

Posted 28 Oct 2018 at 17:28

Mike, Pete and neil

thanks all, sound advice. Trying to keep myself calm.....

Geoff

User

Posted 29 Oct 2018 at 10:29

Hi Geoff

all the best for the 7th Nov,
had mine back on 23 July, all that has been written above i can relate to!

keep positive, that's my main thing, yes you will have good, bad and indifferent days but overall keep positive.

all the best Andy

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