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Due for surgery in 2 days

User
Posted 30 Jan 2019 at 19:42

Hello All,


 


I am 42 and I was diagonised of PC (3+4) in Dec., 2018. Fast forward to now I am due for surgery on Friday (2 days aways). Surgery was considered the best option for me given my age. I have had bone scan and its all good and I am just hoping everything will be alright.


I was told I might leave the hospital the following day. But would just like to hear of experience of people who have had similar procedure.


 


Coljef

User
Posted 31 Jan 2019 at 00:21

Hi Coljef


My husband is a bit older than you (mid-50's) but we are young at heart and have young kids. His was Gleason 3+4, diagnosed late last year, and he had his robotic prostatectomy with nerve sparing and lymph node removal on Jan 22nd (8 days ago) Today he had his catheter removed and the pathology was clear, so we are feeling good! I cannot emphasize enough that you should do your pelvic floor/kegel exercises before the op and after the catheter is removed.


Do get a bucket to keep your overnight bag in- keeps it off the floor and contains leaks (we had no leaks, though, but it did keep the dog away from the bag, lol!)


Definitely find a pair of loose tracksuit bottoms or trousers a size too big. My husbands waist is a 36 but was 40 right after surgery and is a 38 at the moment so fastening trousers is awkward and hurts those wounds. Loose pants are also important as skinny jeans won't fit a catheter bag inside them after all it's only for a week or so, start a new trend ;-)


You may need help getting in and out of the chair as your tummy will be really sore so identify a good arm chair in front of the tv/computer, wherever you like. 


Similarly getting on and off the bed can be very uncomfortable for first few days. Take it slowly and try and roll on your side and push yourself up (or have someone pull you up, just try not to use your abs.


The catheter may bother the end of your willy. Get some instillagel to ease this. Also keep that area clean and wash gently with warm water. 


The leg bag is OK so long as you get it positioned to suit you. Even though my husband is 6foot3 we trimmed the tubing from the catheter to the leg bag so it was more comfy for him. He also wore a "garter" (old bit of elastic) round his thigh as well as the catheter grip to keep the tube from moving around.


If you can, walk asap. He was up within 3-4 hours of surgery walking with a nurse round the halls of the hospital and they did that overnight with him too (while I was at home tucked up in bed!)


Keep up with the fybogel for a couple of weeks (pre and post op) as it makes it much easier to go for a number 2.


Get a small whiteboard/ notepad and write down the type of meds and the times/days you need to take them and you can tick off when you take them. My husband had pain meds, one pill once a day, another twice a day, another for 5 days only,  another alternate days, etc etc. This should reduce after a week or so but you need to keep track!


Keep your pills in a biscuit tin or Tupperware type box or toiletry bag so that they are all together and out of the reach of kids and pets. We also had a tray on the bedside table with wipes, tissues, catheter bits and bobs. That's all gone now and it was untidy for a while but necessary. 


Take a pair of incontinence briefs to your catheter removal appointment and a pad or two to put in front, then if you have a leak on the journey, you just remove the pad rather than having to get completely undressed in a public loo!  Once we got home my husband took off the big pants and put on regular undies (not boxers) with a couple of pads inside. Fortunately he has felt the urge to wee and has not yet had a leak but who knows what tonight/tomorrow might bring? 


I would put a pad (like the puppy training pads) on the bed in case of dribbles when you change from night bag to day bag. There was no room in our loo for the 2 of us so we did all that in the bedroom(!) I believe they are good for after catheter removal too as you regain control of continence.


As you are young I am sure you will have few side effects and will be back at full health within a year. I really wish you well and look forward to hearing how you get on. All the very best from the polar vortex!

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User
Posted 30 Jan 2019 at 19:48
Hi Coljef,

if you haven't already been shopping, here are a few things that might be useful:-
- a bucket to stand the night bag in
- tracksuit bottoms, ideally in a dark colour, soft material and drawstring waist rather than elasticated (if you can find any)
- some proper pants / Y-fronts in a size larger than you usually wear - these will be better than boxer shorts for supporting your testicles & penis if very swollen
- ask the hospital whether they will provide you with Instagel or similar topical anaesthetic for the eye of your penis. If not, you should be able to buy it from the local chemist
- a waterproof sheet or disposable bed pads for when the catheter comes out (pet shops often sell large disposable puppy pads that will do just as well)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Jan 2019 at 20:28

Hello Kierkegaard,


Many thanks for the timely advice!


Regards,


Coljef


 

User
Posted 30 Jan 2019 at 20:55

 Coljef, taking fybogel for a couple of days before your op' will minimise constipation.


You will be prescribed laxative meds after surgery. However, continuing with the fybogel for a week or so will keep things moving. 


I wish you all the best.

User
Posted 30 Jan 2019 at 21:59
Get a box or clear out a bedside drawer for the vast pile of drugs you will walk away with to avoid your bedroom looking like a drug den 😂
User
Posted 30 Jan 2019 at 22:10
John wasn’t given any drugs post-op, just paracetamol.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Jan 2019 at 23:21

Originally Posted by: Online Community Member
John wasn’t given any drugs post-op, just paracetamol.


Yep same here Kierkegaard 😉


Bri

User
Posted 31 Jan 2019 at 00:21

Hi Coljef


My husband is a bit older than you (mid-50's) but we are young at heart and have young kids. His was Gleason 3+4, diagnosed late last year, and he had his robotic prostatectomy with nerve sparing and lymph node removal on Jan 22nd (8 days ago) Today he had his catheter removed and the pathology was clear, so we are feeling good! I cannot emphasize enough that you should do your pelvic floor/kegel exercises before the op and after the catheter is removed.


Do get a bucket to keep your overnight bag in- keeps it off the floor and contains leaks (we had no leaks, though, but it did keep the dog away from the bag, lol!)


Definitely find a pair of loose tracksuit bottoms or trousers a size too big. My husbands waist is a 36 but was 40 right after surgery and is a 38 at the moment so fastening trousers is awkward and hurts those wounds. Loose pants are also important as skinny jeans won't fit a catheter bag inside them after all it's only for a week or so, start a new trend ;-)


You may need help getting in and out of the chair as your tummy will be really sore so identify a good arm chair in front of the tv/computer, wherever you like. 


Similarly getting on and off the bed can be very uncomfortable for first few days. Take it slowly and try and roll on your side and push yourself up (or have someone pull you up, just try not to use your abs.


The catheter may bother the end of your willy. Get some instillagel to ease this. Also keep that area clean and wash gently with warm water. 


The leg bag is OK so long as you get it positioned to suit you. Even though my husband is 6foot3 we trimmed the tubing from the catheter to the leg bag so it was more comfy for him. He also wore a "garter" (old bit of elastic) round his thigh as well as the catheter grip to keep the tube from moving around.


If you can, walk asap. He was up within 3-4 hours of surgery walking with a nurse round the halls of the hospital and they did that overnight with him too (while I was at home tucked up in bed!)


Keep up with the fybogel for a couple of weeks (pre and post op) as it makes it much easier to go for a number 2.


Get a small whiteboard/ notepad and write down the type of meds and the times/days you need to take them and you can tick off when you take them. My husband had pain meds, one pill once a day, another twice a day, another for 5 days only,  another alternate days, etc etc. This should reduce after a week or so but you need to keep track!


Keep your pills in a biscuit tin or Tupperware type box or toiletry bag so that they are all together and out of the reach of kids and pets. We also had a tray on the bedside table with wipes, tissues, catheter bits and bobs. That's all gone now and it was untidy for a while but necessary. 


Take a pair of incontinence briefs to your catheter removal appointment and a pad or two to put in front, then if you have a leak on the journey, you just remove the pad rather than having to get completely undressed in a public loo!  Once we got home my husband took off the big pants and put on regular undies (not boxers) with a couple of pads inside. Fortunately he has felt the urge to wee and has not yet had a leak but who knows what tonight/tomorrow might bring? 


I would put a pad (like the puppy training pads) on the bed in case of dribbles when you change from night bag to day bag. There was no room in our loo for the 2 of us so we did all that in the bedroom(!) I believe they are good for after catheter removal too as you regain control of continence.


As you are young I am sure you will have few side effects and will be back at full health within a year. I really wish you well and look forward to hearing how you get on. All the very best from the polar vortex!

User
Posted 31 Jan 2019 at 05:55

Good god.


I was given:


Paracetomol


Cocodamol


Ocycontin


Heparin (jabs)


Constipation pills


Constipation powders


Tena pads


 


They filled a carrier bag to the brim plus the big box of pads


 

User
Posted 31 Jan 2019 at 08:28
Hi coljef
I had a RARP 2 years ago at Addinbrooks.
Op was first thing AM. I had self administed enema about an hour before arrival. I had compression stockings on from arrival. Over night the nurses came round and checked/emptied the catherter bag. The following AM they changed the catherter bag from a bedside one and fitted it to my leg. After breakfast I was told I had to walk 25 lengths of the corridor by lunch time when I would be discharged. This was to help with moving wind and getting bowels moving. I didn't quite manage 25 but no one was counting. Got discharged about 1pm. I was staying in the hospital accommodation so not far to go. The wonderful Surgeon phoned on my mobile at 9pm to check I was OK. That night was difficult with wind pain and shoulder pain, they inflate your abdomin with C02 during the op and it finds it way around your body. I went in the next day and was told to take the pain killers as prescribed, dont wait for pain to arrive. You need all your energy for healing rather than fighting pain.
Next day, one hour taxi then flight home. The taxi journey was painful. You need a smooth sympathetic driver and mine was'nt. The flight was fine.
Compression stockings and anti coagulant injections for 28 days
Pain killers and laxative.
Catherter out at day 7 which I was really worried about. The district nurse arrived and I said I wanted to remove it my self as then I would be able to stop if I felt resistance or pain. She agreed. She deflated it and I slowly removed it. I felt absolutely nothing until the very last 2cm or so.
I was dry at night from then on and wore number 2 tenner pads for a couple of weeks then number 1 untill 6/7 weeks then dry.
I sarted walking, increasing gradually each day. By 5 weeks up to twelve miles and back to work.
Post op path report was nerve spared rh side only, Pt3a, extracapsular extension. Nx Mx

7 weeks PSA was undetectable and remains so as of yesterday.
Still slight inconvenience with urinary urge and frequency but manageable.
ED has improved over the two years to about 50% pre op. I use daily cialis, occasionally viagra and vacuum pump daily hoping for further improvement.

If you want more detail/clarrification on anything just ask. If I cant remember ther's plenty others here who will help.

All the best with your op and future recovery

Cheers
Bill
User
Posted 31 Jan 2019 at 09:32

Originally Posted by: Online Community Member


Good god.


I was given:


Paracetomol


Cocodamol


Ocycontin


Heparin (jabs)


Constipation pills


Constipation powders


Tena pads


They filled a carrier bag to the brim plus the big box of pads



John had none of that, they said his blood was so good he didn’t need the blood thinners and the only pain relief was paracetamol which we bought ourselves. But he had open surgery and was in hospital for 5 days so that might be the difference, having the benefit of epidural anaesthetic for the 1st 24 hours and then morphine until he came home. 


Coljef are you having open surgery or keyhole / robotic? Issues with gas etc don’t apply if you are having open surgery. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Jan 2019 at 09:37

Coljef


Some good advice above. Apart from one horrific bout of pain caused by getting constipation I was pretty much pain free post op. I came out with oramorph and tramadol despite experiencing instant vomiting with the tramadol.


Take advice from your team, but just to clarify a couple of comments, the night or bed bag is "attached" to the leg bag at night  not "changed" to the night bag. If a catheter bag is removed from the catheter it should be replaced with a new sterile bag. If using a bucket or bowl do not just drop the bag in the bottom of the bucket, use a stand  or support it so it hangs down. Manufacturers of the catheter products cite bags being folded or on the floor as a cause of catheter blockages. Urine accidents are more likely to happen when attaching and detaching bags due to incorrect tap closure. As a long term catheter user I have never had  faulty leaking bag. A leg bag should not be left until full. I think the recommendation is no more the two thirds full.


Hope all goes well


Thanks Chris


 

User
Posted 31 Jan 2019 at 11:35

Click on my profile, ‘Bollinge’ (and any anyone else’s) to read our stories, and my day by day diary of my robotic laparoscopic surgery is here:


https://community.prostatecanceruk.org/posts/t16224-Retzius-Sparing-Laparoscopic-Radical-Prostatectomy


Best of luck with your surgery.


Cheers, John.

Edited by member 31 Jan 2019 at 11:41  | Reason: Not specified

User
Posted 31 Jan 2019 at 13:36

Hi Chris, I'm sorry if what I said was misleading but the drainage bags we were given were changed from night to day. We attached it below the upside down y shape and secured it with tabs. The night bag was emptied out and flushed clean ready to reattach at night . We are in the US so maybe different to UK? I did have qualms about infection but all was good. Any longer than a week though and I would have asked for new bags as they did begin to go a bit yellow . Hope that clears up any confusion, especially for folk who have not yet had catheterization . 


Thanks to all your posts they are invaluable .


Stay warm!

User
Posted 31 Jan 2019 at 14:10

H


No problem, the terminology used in one country is confusing let alone between countries. Regards infection, yes leg bags are "usually changed after 5_7 days, some night bags are supposedly "one use" then throw away. 


Thanks Chris


 

Edited by member 31 Jan 2019 at 14:15  | Reason: Not specified

User
Posted 31 Jan 2019 at 16:04

I was told I'd leave the day after and I was walking around the ward without a problem and could have gone home.  During the op they fit a pelvic blood drainage line and bag and it was still draining a reasonable amount of blood 24hrs later so I asked to stay another night.  They agreed it was a good reason to stay.  I didn't want to stay but the thought of all that blood swishing inside me seemed a bit odd.


I went home with 26 blood clotting injections.  10 overnight catheter bags, they normally give you less as more are delivered by van, but it was Christmas and I asked for more in case the delivery didn't happen (it did so I took the box to the local district nurse unopened).


They gave me a plastic frame for holding the catheter bag overnight.  I had no problems with leakage in bed at any time, nor problems with the catheter except it was tight sitting on the loo.


They also gave me a staple remover to take to the GP when I had the op staples removed a week later.


You need to get some continence pads.  In winter Boots 4 drop, or is it 5 drop, pads are warm if you intend to be outside.  The Tena one's are more stylish if you like flashing them about.


Ear plugs are needed if you're in a ward with others. 


My op went great with no pain at all, so all the best.


I've more details on my profile and in a website listed on it.


 

User
Posted 31 Jan 2019 at 16:25
The pelvic drain depends how the op goes. I didn't have one, the guy next to me did. He still went home next day.

Cheers
Bill
User
Posted 31 Jan 2019 at 18:40
The notion of catheter bags being delivered by van must be very specific to where Peter lives - certainly doesn’t happen in our area and I have never heard of it anywhere else either.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Jan 2019 at 18:59
I just got given a load of spare bags and tubes with my container load of drugs.

Lynn - interesting. My supplies were at least two weeks of happy pills so wonder at the difference.
User
Posted 31 Jan 2019 at 21:23

Bill, Interesting.  I thought pelvic drainage was normal but just found a 2007 report that said only 22% of 325 consecutive patients had a drain, 27% for open and 10% for Robotic.  In general it's not significant to the outcome although there is a small increase in risk of complications.  I was told there were no complications in my op.


https://www.researchgate.net/publication/6529785_Routine_Pelvic_Drainage_Not_Required_After_Open_or_Robotic_Radical_Prostatectomy


 


Lyn, the bag delivery was through an organisation based in Peterborough, I live in Lancashire.  It worked very well.  I thought that was standard as well.


A quick search brings up a company called Coloplast Charter, who 'deliver discreetly', based in Peterborough.


 


Thanks

User
Posted 31 Jan 2019 at 21:26
Nothing is standard in PCa treatment ☹️
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Feb 2019 at 16:57
Coloplast's Charter subsidiary use normal courier firms and the packaging is plain cardboard boxes. I use them for my urostomy supplies. No complaints!

AC
 
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