some quick top tips

User

Posted 18 Oct 2021 at 22:41

Hello all. my husband had surgery this afternoon (da vinci) and due out tomorrow. He has early stage/localised.

We are pretty informed, have read a lot of info and are all padded up for when the catheter comes out in a couple of weeks ! My main question is (and apologies its probably on lots of other threads here but i just couldn't find) what are the main top tips for the next few days ? tips around sleeping comfortably with catheter, tips on gentle exercise/walking a few minutes, tips on sitting comfortably. What might i need to buy that is not obvious ?! many thanks in advance. jane

User

Posted 19 Oct 2021 at 00:22

Welcome to the forum. No one can be sure with this disease, but with early stage localised cancer, he has a high chance of being cured.

I haven't had surgery so I can't give any precise tips. But in general, take it easy. If he is fit and active, just get him to slow down a little. It is major surgery, lots of muscle and tissue were cut. Yes a bit of exercise is good, but over doing things in the next six weeks could delay a good recovery by six months. If when the catheter comes out there is hardly any bladder control, don't worry, at all, it can take months to get full control back.

Some people are lucky, they have full bladder control straight away, and are doing long walks, and cycling within a few weeks. But we get a good few posts, a few weeks after surgery, where people say "I was doing fine, then I forgot all about the surgery and lifted a bag of coal and now I have a pain in my abdomen".

So tell him to take it easy. If after two weeks, he is still lying in bed, and rings a little bell and demands you bring him his favourite cigars, and a fine bottle of port, then know he is taking the piss.

I'm sure some others will post soon with more specific advice.

Dave

User

Posted 19 Oct 2021 at 14:20

gosh thank you so much people. really clear and helpful. just what i needed. FYI Guy is out this evening. His surgeon really pleased with how it went. He was able to do a lot of nerve sparing both sides. and there were no visible signs of cancer elsewhere. but of course early days and histology in 6 weeks. right...bucket, straps, velcro..

User

Posted 20 Oct 2021 at 00:26

Hernia is a known risk for men who gave had RP, particularly if they had keyhole / Da vinci surgery. Those who have problems are often the ones who rushed their recovery - lifting too soon, etc. Playing a round of golf 4 weeks post-op was one example on here.

Although the external wounds look small, the amount of internal cutting, slashing and burning is significant.

I would add to the shopping list-

- a waterproof sheet or puppy training pads to protect your mattress when the catheter comes out

- proper pants (not boxer shorts) one size larger than usual to support the scrotum and penis if there is a lot if swelling. He has had a vasectomy as part of the op.

- track suit bottoms in a soft, dark material, preferably with a drawstring waist rather than elastic if you can find any. M&S usually sell these.

Edited by member 20 Oct 2021 at 00:30 | Reason: Not specified

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

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User

Posted 19 Oct 2021 at 00:22

Welcome to the forum. No one can be sure with this disease, but with early stage localised cancer, he has a high chance of being cured.

I'm sure some others will post soon with more specific advice.

Dave

User

Posted 19 Oct 2021 at 00:32

1 When he comes out do exactly what the professionals tell you to do re re-hab

2 Watch out for hi temps / clammy - you don't want any infections.

3 The first sh1t is the worst - drink plenty and eat fruit and veg!

4 Sex is going to be different, be kind and patient with him.

User

Posted 19 Oct 2021 at 05:40

Hi Jane,

I had an open RP about 18 months ago.

I could only sleep half sitting up for the first week or so (gets better quickly)

Gentle walking from the off worked for me but you do need to take it easy and not push.

Put the night catheter stand in a bucket. It saves any issues if the tap isn't shut right or something goes wrong.

He needs to be patient and avoid any lifting.

It gets a LOT easier once that catheter is out but make sure he has some TENA 2 pads

Good luck to you both

User

Posted 19 Oct 2021 at 07:30

Jane

Try and avoid getting constipation.

Get some instilagel or hydrocaine in case the catheter makes the eye of the penis sore. Available with prescription or from a Pharmasist.

Get an extra thigh / G strap and secure the night bag tube to the ankle, save pulling on the bag joints.

Make sure all catheter joints are tight.

Drink plenty of water.

Take it easy but keep mobile.

Thanks Chris

User

Posted 19 Oct 2021 at 08:15

Hello Jane,

First, don't underestimate the journey home. Depending on how you're travelling and the length of journey, you may need to make a pit stop to empty the catheter bag.

I was completely whacked for the first couple of days and found myself nodding off often, especially on the settee. So, I would have pillows scattered around the house. As others have said, make sure the catheter joints are secure and you put the catheter in a bucket by the side of the bed overnight, it's easy to think you've closed the tap when you haven't. Also, it helps if you have a couple of spare straps so you can change them after showering.

You should find that strength returns in a few days and I was able to walk around the house and then the garden. But do take things easy! In a couple of weeks I was able to make short excursions, walking around the block. I was though averagely fit before my operation.

ps. You might find that they can remove the catheter in a week, so be prepared!

User

Posted 19 Oct 2021 at 11:00

Definitely agree with having the night bag in a bucket - I was given a useless stand that just fell over all the time. I also second having spare velcro straps for showering.

Bowel movements are complicated with the bag - I used to unstrap mine and let it sit in my underpants like a hammock - it avoided any unfortunate tugging. Also don't be alarmed by a bit of bypass flow around the catheter - it's expected, just clean up well.

He's going to feel like an elephant stomped on him.

When the catheter comes out (feels wierd but not painful) don't be disheartened by the lack of control - it will settle. About 5 - 6 weeks after the op he may pass some old clot debris as the stitches dissolve - that leads to a big increase in control. I also used the Squeezy for men app on my phone to prompt me to do PFE. Four months on I can drink coffee, beer, wine and can cough or sneeze with complete dryness - maybe a bit hesitant about a fart (sorry a bit TMI but it's the truth).

Close fitting underwear works better with the pads - boxers no good.

Best of luck!

Upkeep

User

Posted 19 Oct 2021 at 12:24

I am now 7 weeks post RARP

I was surprised at the amount of swelling of scrotum! Certainly meant that any thought of sleeping on my side was out of the question. Definitely flat on back propped up was most comfortable.

When sitting for a while (TV in evening say) I found taking the bag off my leg and using a night stand meant I could raise my legs with the bag on the floor

If you do not have extra thigh straps look at this site https://www.greatbearhealthcare.co.uk/products/leg-bag-straps-and-holders/

They will send you free samples very quickly. Note you can ask for more than one type I got three extra sent Large, medium and adjustable. These are great and having spares means you can shower and replace with dry straps. I took the bottom strap off when showering so only one gets wet.

It takes a little getting used to but I found the catheter not too bad and although it sounds a longtime at first the time with catheter soon passes. Once removed make sure the pelvic floor exercises are done religiously - they make a big difference and I am sure the reason I was dry very quickly.

The NHS pads supplied do a job but large not comfortable. I found Tena2 were ample once catheter removed - but everyone different so don’t buy lots until you know what is definitely needed.

Whatever you do do not overdo the exercise - build up slowly

Hope all goes well.

User

Posted 19 Oct 2021 at 14:20

User

Posted 19 Oct 2021 at 16:17

Really glad everything seems to have gone well, my husband should be having his op soon so this post will be really useful….thank you. Best of luck going forward and keep us posted 👍🏽

User

Posted 19 Oct 2021 at 17:39

Glad its all gone well so far Jane

It will take several weeks for things to settle down so imporatnt for Guy not to get anxious. I was leaking until about week 10. Have a look at my profile if you are interested in how things improved.

User

Posted 19 Oct 2021 at 22:43

Ask the ward for some Instillagel (it comes in a prepackaged syringe) it’s a lubricant and it has some local anaesthetic properties that can be used for discomfort around the catheter/penis.
Best wishes.

User

Posted 19 Oct 2021 at 23:49

Made several mistakes post-op, but the worst was to think I was okay after just a couple of weeks.

Just prior to going into hosp for a RARP (DaVinci), I had been badly let down by a gardener who'd been booked in to lay some turfs for a new lawn. So on my return home I would sit there staring out through the patio doors at the turfs gradually rotting and the painstakingly prepared ground getting buried in weeds. The turfs needed to be laid, otherwise I'd lose them. Told myself I was well on the way to full recovery so set about removing the weeds and laying the turfs myself! Of course I discovered was much weaker than I'd thought and the sods were much heavier than I'd imagined. But I felt it had to be done, so pushed on with it regardless.

It was AGONY. I was reduced to lugging the turfs around quite literally on my knees. Nevertheless I completed the job but it was the most foolhardy thing I have ever done. Set my recovery back four full weeks.

Problem is, when you are in recovery mode, you have too much time to think. You tell yourself you are better than you really are and worry too much about what needs doing. It's much harder to relax than you think. You feel a fraud and riddled with guilt.

So as others have said, the most important thing is to let go of everything, put your feet up and relax.

Here's hoping things go much more smoothly for you and your husband !

User

Posted 20 Oct 2021 at 00:26

Although the external wounds look small, the amount of internal cutting, slashing and burning is significant.

I would add to the shopping list-

- a waterproof sheet or puppy training pads to protect your mattress when the catheter comes out

- proper pants (not boxer shorts) one size larger than usual to support the scrotum and penis if there is a lot if swelling. He has had a vasectomy as part of the op.

- track suit bottoms in a soft, dark material, preferably with a drawstring waist rather than elastic if you can find any. M&S usually sell these.

Edited by member 20 Oct 2021 at 00:30 | Reason: Not specified

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

User

Posted 20 Oct 2021 at 10:51

Elaine, these top tips have already been invaluable ! especially the bucket at night. Although much bigger, the night time catheter bag was still filling right up every few hours so we kept setting an alarm to empty it. even so, the bucket was required ! i also bought protective fitted sheets for the bed (got mine ikea) they have a rubber underside and can be washed at 40 degrees. but i think even Morrisons have them. weve already gone through a few pairs of baggy pj's or jogging bottoms so better to have a few pairs on hand.

Again, everyone on here has been so hopeful. its made a big difference to me.

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