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RARP Good News

User
Posted 13 Apr 2020 at 16:33
Thanks again Chris

"Not sure about your liquid intake regime, I would swap beer for vodka or gin.πŸ˜€."

Yes I don't mind either occasionally. Variety is the spice of life 🍷🍸πŸ₯ƒπŸ»

Just have to hang in there untill all this c19 stuff settles down. Others need help more than me right now.

Good luck with your own issues

Cheers

Bill

User
Posted 04 Jun 2020 at 18:04
Latest

PSA still 0.02. I got the last one double checked also 0.02 so thats 3 in a row after 3 years of undetectable.

Telephone review and now got an appointment for dilation on Monday, despite c19 due to further flow deterioration, pain and increased urge and frequency. I think it was that or high risk of full retention and A&E very soon. Had to have c19 test and self isolating until admission.

Hope you all keep virus free and as well as possible.

Cheers

Bill

User
Posted 04 Jun 2020 at 18:30

Great PSA result Bill.  Hope all goes well for you next Monday.

Angex

User
Posted 04 Jun 2020 at 18:40

Bill

Very good set of results , hope it stays that way. Best wishes for the dilation don't forget to get some instilagel or hydrocaine.

Thanks Chris

User
Posted 06 Jun 2020 at 10:21

Hi, Bill

Your post is very encouraging!

I also had RALP, at the end of February this year.

The encouraging post-surgical analysis says:

"His final histology revealed a Gleason 3+4 cancer, which was organ confined and clear margins were achieved."

It's been a 6 year journey.

you can see my blog with details:

www.andrewhamm.uk/prostate

So far, I'm down to only 1 small, light pad per day, nothing at night.

We obviously all respond differently, so I will have to see if I ever reach your no-pads situation. The clinic nurses say it's still early days yet (3 months).

My PSA and gleason were previously almost identical to yours. Now, it's undetectable at 0.03. 

My ED is clinically defined as "no spontaneous erection". I do have an appointment booked with a specialist on 16th July to be "sized up" (!) for a vacuum pump. (See blog mentioned above for details). I can manage a non-rigid erection at the moment if I use a small band ring and stand up.

Thanks again for sharing,

Andrew

Edited by member 06 Jun 2020 at 13:21  | Reason: added to follow conversationi

______Grateful for the goodness of God________

User
Posted 06 Jun 2020 at 12:20
Bloody hell Andrew, I hope it wasn't your autopsy! 🀣
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jun 2020 at 13:23

LOL no!

But thanks to faith in Christ, I'd be ready if it was! 

I've corrected it to the formal surgeons report now.

______Grateful for the goodness of God________

User
Posted 06 Jun 2020 at 16:20

😁

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

User
Posted 06 Jun 2020 at 19:18

Hi Andrew

That's an interesting blog.

If your getting a pump the Somarect is good and makes it easy to get the rings on but I find the cheap on line ones also just as good for producing an erection. The advantage is the one I use is so lite and less bulky I can use it standing up and moving around, no hands. Also in the shower.

ED still improving after three + years so very early days on that front for you and the same with the leaking.

Good luck with your ongoing recovery

Cheers
Bill

Edited by member 06 Jun 2020 at 19:27  | Reason: Not specified

User
Posted 10 Jun 2020 at 16:27
I had the dilation on Monday. Catheter out on Friday.

I just got some instillagel. The leaflet says the tube is single use and discard the rest. Surely it's ok to use a bit at a time?

Cheers

Bill

User
Posted 11 Jun 2020 at 08:12
Also, any recommendations for a noseles or prostate friendly bike saddle please.

Plenty on Amazon but a bit of a minefield really

Cheers

Bill

User
Posted 11 Jun 2020 at 08:34

I went for the Specialized Power Expert saddle which I'm very happy with

User
Posted 15 Jun 2020 at 13:32
Following the dilation last Monday the Catheter was removed on Friday. Like last time I removed it myself under the Nurse's supervision.

TWOC

The Trial With Out Catheter went amazingly well. The flow rate of the first pee took me by surprise. 400ml in about 20 seconds. After previous flow of less than 3ml/sec and a lot of pushing required it felt like heaven. And it gets better, so far only up once a night where as it was 4 or 5 times and taking 5 to 10 minutes each time, that was not really expected.

And there's more, frequency is much improved and only a very slight leak on the first day while out on a long walk. Urgency has changed, although I can last longer, need to pee means have to pee almost immediately.

All in all I'm absolutely thrilled with the result. I hadn't realised what effect on my QOL the stricture was having until it was fixed.

I just hope it lasts as I know it can gradually recur. Intermittent self catheterisation lesson on Thursday to help keep it open.

Cheers

Bill

User
Posted 15 Jun 2020 at 13:58

Bill

Great news, I really do hope that it is sorted. Be very very gentle with the self dilation and if you can, get a variety of catheters, and relax when performing the procedure. The bladder and Urethra can sometimes hold onto the catheter. When it happened to me, I relaxed waited a short time and just gave a slight twist on the catheter.

 

Thanks Chris

 

Edited by member 15 Jun 2020 at 15:09  | Reason: Not specified

User
Posted 18 Jun 2020 at 19:50
Thanks Chris

First attempt/ lesson for Intermittent catheterisation was today. I didn't go well at all. First try was standing. It went in so far then wouldn't go around the bend. I started feeling very faint and unwell. Thr nurse offered to just do it for me but I wanted to be in control. Then we tried semi lying down. I was pushing it in as hard as I could but it's so slippery and I was afraid of doing damage. You need three hands, one to hold the penis, one to get some exItra push at the end which is not so slippery and one to hold the slippery bit near the penis. I ended up a shaking, sweating wreck and we had to give up. That was an 18f catheter next week we will try with 14f and I am determined to succeed. Maybe I was to tense.

Cheers

Bill

User
Posted 18 Jun 2020 at 22:21

Bill

I used to do mine in the bath/shower, with one foot on the side of the bath. 18 is a bit brutal to start off with , I started with 12s and worked my way up. I got on well with tiemann tips, they are slightly angled so you can turn them to get round the bends. The spout end had an embossed line so you could tell which way the tip was facing. Remember to be gentle , it's easy to  damage your bits without feeling any pain.

Thanks Chris

User
Posted 18 Jun 2020 at 22:26

Hi Bill, I replied to this thread a few months back extolling the virtues of cisc. It really is such a life changer that it is worth persisting. Anyone else reading this post who is a little squeamish may find it goes in to more detail than you want, you certainly won't want to read it whilst you're having your tea. 

You are right about the need for three hands. I'll try and give you some tips.

My caths are 14f I think 18f would be a challenge.

I am using HiSlip plus. I assume yours are the same or similar.

Once you succeed your going to get a lot of urine flowing out of the cath if you get it wrong that could be going over your carpet or sofa so best do this in the bathroom.

I don't know whether you intend attaching a bag to the cath, I think we did for the demo but in practice I think you will just want to be able to use the cath on its own and hopefully get the urine down the toilet without having to manage the bags as well. 

Forget about aiming for the toilet, as any woman will tell you, us blokes have got a bad aim at the best of times, add in the complications of the cath and your aim is anywhere.

So put an old bowl in the bathroom washbasin this is about waist height which means you don't have to aim far when your standing right next to the sink and any which misses the bowl you're going to just have to turn the taps on and wash down the sink.

Next sit on the edge of the bath, I find this a bit better than sitting in a chair which is a bit too low, and easier than standing which is a bit too tiring if things are taking there time. 

Get the cath lubricated and out of its sachet. It has the bag end which is green (maybe different colour on an 18f) plastic, the bladder end, and in between a wrap around blue sleeve. Ideally you only want to touch the bits which aren't going in your body, the rest is slippery and will be going inside you so you don't want to contaminate it.

Sit with you thighs clamped together this should make your penis jut out a little. Left hand holding the bag end of cath with a finger or thumb blocking the cath exit hole, you'll only take that finger or thumb off when it's fully in and you're standing up and pointing straight at the bowl.

With your right hand fist gently around penis, but thumb and forefinger just above head of penis holding the blue plastic sleeve gently and guiding cath down eye of penis. You should manage about four or six inches with ease, then you have to get around the bend.

Left hand should keep applying pressure but not so much that the cath just flexs and bends. Right hand fist should be supporting penis to stop it bending, relax your thighs now, having them clamped will not help the next bit. If possible pull penis away from body a little that way you have to go around a 90degree bend rather than nearly 180degrees.

Now slide sleeve along catheter about half an inch further up than eye of penis keep as much of fist supporting penis as possible grip sleeve with thumb and forefinger as hard as possible so you can use them to push cath in the extra half inch, you have to be gripping hard enough that sleeve does not slip along cath. Repeat this process half an inch at a time.

Best tip I ever had was, if you feel resistance COUGH. I think it just relaxes the bladder muscle for a second.

You should be in in no time at all. The cath seems almost compelled to come out so don't let go of it or penis with either left or right hand. Stand up, go to sink, aim at the bowl remove thumb or finger, relief. 

You've not finished yet, stay at sink. Slowly start to remove cath, more urine will then come out from lower in your bladder, keep removing cath, just as the end of cath leaves the eye of penis a little more urine will come out. It's these silly unexpected bits of urine that could make a mess. 

Now tip bowl down toilet, tidy up, drink a load of beer so you can have another go. After practice you'll be able to do this sitting on a toilet seat and once cath is in, stand up, turn around and piss down toilet. I still spray a little over the toilet seat but that's just me marking my territory. 

 

Dave

User
Posted 19 Jun 2020 at 16:51

Thanks Chris & Dave

"Remember to be gentle , it's easy to damage your bits without feeling any pain."

I was pushing quite hard but just couldn't get round the bend. If I can't do it on Monday I'll ask about the softer ones or a curved tip.


"I am using HiSlip plus. I assume yours are the same or similar"

Mine will be Lofric, very similar 

"Once you succeed your going to get a lot of urine flowing out of the cath if you get it wrong that could be going over your carpet or sofa so best do this in the bathroom."

Only doing it to stop the recently dilated stricture closing up, so empty bladder first.

Thanks again Gents

Cheers
Bill

Edited by member 19 Jun 2020 at 19:30  | Reason: Added quotation marks

User
Posted 19 Jun 2020 at 19:00

Bill

I used, lo fric and IQ, my favourite was a WyCathH2O, it has a very soft slightly angled tip.

Thanks Chris

User
Posted 19 Jun 2020 at 19:08
I needed to self catheterise for a little while, such a strange experience. I'm not too proud but the 1st time was being instructed by the urologist nurse it just felt wrong. Anyway not too much problem then but the next two times I tried at home on my own just could not do it at all probably equal split between brain thinking this isn't right, nervousness and plain fear. As mentioned I was absolutely drenched in sweat as well. However from 3rd night onwards no problem once I got it in my head, I think, that you have to push a bit when you get to the 'closed food's. Best of luck. I would say being as relaxed as possible, pretending its perfectly natural is good, in general of course.

Peter

User
Posted 19 Jun 2020 at 22:35

Doing with an empty bladder will take some of the stress away, mind you don't be surprised if you find your bladder wasn't as empty as you thought. I guess if the main purpose is dilation they may have gone for the size 18f to make a bigger impression, but I think a less ambitious 14f may have been a better idea.

It does feel weird and unnatural. But once you have PCa being prodded and poked becomes natural and you may as well be prodding and poking yourself rather than leave the doctors to do all the prodding and poking. 

Dave

User
Posted 22 Jun 2020 at 19:30

Tried a 14f, no way it was going in. I wasn't to tense it met a restriction and was just bending and flexing. So the nurse said she would try a tiemann tip one. She got it in and now I will try at home alone (standard tip) with a Tiemann (caude) if it doesn't work. What surprised me was she advised the tip should be inserted facing away or down. As an engineer that doesn't make sense, the opposite way of the bend we're going round. I do have total confidence in and respect for the specialist nurse and she did say under certain circumstances they turn it the other way but I can't find anything on Google to back it up. But it did go in, not easy at all but maybe the next one will be easier.

Im surprised to have so much touble with such good flow.

Not giving up yet but this isn't easy at all

Cheers
Bill

Edited by member 22 Jun 2020 at 19:59  | Reason: Not specified

User
Posted 22 Jun 2020 at 20:29

Bill

It will get easier, on a scope my hole looked quite big, but the consultant described it as a pin hole.

Remember be gentle.

Thanks Chris

User
Posted 24 Jun 2020 at 18:00

Originally Posted by: Online Community Member

What surprised me was she advised the tip should be inserted facing away or down. As an engineer that doesn't make sense, the opposite way of the bend we're going round. I do have total confidence in and respect for the specialist nurse and she did say under certain circumstances they turn it the other way but I can't find anything on Google to back it up. But it did go in, not easy at all but maybe the next one will be easier.

 

Any one been told to go in with the tip curving down or away from you? Just doesn't make sense. All I can find on line is advice to the opposite.

 

Cheers

Bill

User
Posted 24 Jun 2020 at 18:42
I think these discussions should come with a Parental Warning.

Can you believe some men insert objects into their urethra for sexual gratification? I’ve seen the videos to prove it when I clicked on something by accident...πŸ˜‰

Best of luck.

Cheers, John.

User
Posted 24 Jun 2020 at 19:41

Bill

Gently advance the curved tip catheter into the urethra using a large amount of water-soluble lubricant. Maintain the catheter in the 12 o'clock position during passage (curved tip pointing up). 7. Insert the curved tip as per normal catheterizations, until urine return is obtained, then insert 2-3 inches more.

The above is from a makers web site.

I think this describes how I did mine and sounds the same as your interpretation. If you hold the penis up , the route to the bladder is a big U shape and the curve of the catheter follows around the curve of the Urethra.

 

Thanks Chris

 

User
Posted 24 Jun 2020 at 19:59
Thanks Chris that's exactly what I read and thought and will do if I can't get the straight one in tomorrow which is my aim.

Strange that I was told otherwise.

Cheers

Bill

User
Posted 24 Jun 2020 at 21:22

I have encountered these failures in logic amongst professionals before. I won't go in to all the tedious detail of a recent occurrence, all I will say is when I thought about it afterwards I thought "yes in a few circumstances what you have said is correct, and that's what you've been taught, but you're not seeing the bigger picture". However it's sometimes me who's not seen the picture. So you'll have to try each method and then post back and let us know. 

Dave

User
Posted 24 Jun 2020 at 23:10

John (Bollinge)

My mates wife did a stint in A&E and treated a chap who had fed 1m of copper core flex up his urethra for fun. In the end they needed surgeons as it had coiled in the bladder so couldn’t be retrieved easily.

Having had swabs (early years...), cytoscopy and the catheter removed I wouldn’t rate it as fun. Nothing stranger than folk πŸ₯΄πŸ‘€πŸ€·πŸΌ‍♂️

Symantec 

User
Posted 25 Jun 2020 at 01:30

Originally Posted by: Online Community Member
a chap who had fed 1m of copper core flex up his urethra for fun

 

Haven't we all .... 

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

User
Posted 25 Jun 2020 at 23:49

Originally Posted by: Online Community Member

Bill

Gently advance the curved tip catheter into the urethra using a large amount of water-soluble lubricant. Maintain the catheter in the 12 o'clock position during passage (curved tip pointing up). 7. Insert the curved tip as... 

OK I can see the possible misinterpretation. If you are doing this yourself whilst standing up. Then up is the surface of the penis opposite the frenum, but if you are a nurse in training doing this to a patient lying on his back (and most are) then up is the surface of the penis on the same side as the frenum i.e. 180degrees different. Isn't it annoying people are taught by wrote by people who learnt the wrong way by wrote, rather than taught how to analyse a problem, and will then persist in their errant ways, passing on misinformation for the rest of their life.

And on the related subject of inserting a metre of copper cable in to bladder, surely any sane person would have stopped at 50cm.

Edited by member 25 Jun 2020 at 23:50  | Reason: Not specified

Dave

User
Posted 26 Jun 2020 at 00:24
πŸ˜‚πŸ˜‚πŸ˜‚
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jun 2020 at 08:59

Originally Posted by: Online Community Member
My mates wife did a stint in A&E and treated a chap who had fed 1m of copper core flex up his urethra for fun.

Adam Kay's book "This is going to hurt" has many similar stories, told with much humour.

User
Posted 26 Jun 2020 at 11:44

I'm glad my predicament sparked a bit of amusement for some.


BTW I hope he took the plug off. Or maybe he was going to switch it on like the bloke in the linkπŸ˜‚

https/drive.google.com/file/d/1Bi965DGw9-atiH4ZsfEs9DihIAmKgi6N/view?usp=drivesdk

 

 

Keep smiling if you canπŸ˜€

Cheers
Bill

Edited by member 26 Jun 2020 at 15:56  | Reason: Tried to fix link

User
Posted 26 Jun 2020 at 14:07

Hi Bill, to activate a link,
- click on edit
- move your cursor to the end of the supposed link
- click enter
- save

I think though that in this case, the link is not shareable - I tried to copy & activate it and it says there is nothing there. 

 

 

 

Edited by member 26 Jun 2020 at 14:09  | Reason: Not specified

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

User
Posted 26 Jun 2020 at 16:15

Thanks, ya that normally works but not in this case either. Never mind

CheersB

Bill

 

User
Posted 26 Jun 2020 at 17:32

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Bill

Gently advance the curved tip catheter into the urethra using a large amount of water-soluble lubricant. Maintain the catheter in the 12 o'clock position during passage (curved tip pointing up). 7. Insert the curved tip as... 

OK I can see the possible misinterpretation. If you are doing this yourself whilst standing up. Then up is the surface of the penis opposite the frenum, but if you are a nurse in training doing this to a patient lying on his back (and most are) then up is the surface of the penis on the same side as the frenum i.e. 180degrees different. Isn't it annoying people are taught by wrote by people who learnt the wrong way by wrote, rather than taught how to analyse a problem, and will then persist in their errant ways, passing on misinformation for the rest of their life.

 

Yes that's exactly what I was thinking. So now if I have to use the Tiemann tip I will have to challenge the nurse as to why the difference between her advice and all I have read. Or I just do it the opposite to her and say nothing. Also bearing in mind that she did successfully get it in her way.

Cheers

Bill

User
Posted 28 Jun 2020 at 12:54
Well I have just managed to get the 14f in. On Thursday I wasn't sure because only a small amount of urine came out, not enough to fill the catheter. So I thought maybe I just peed into it.

This time with a partially full bladder no doubt at all.

Mid week I'll try 16f.

Still intending to get to 18f eventually if possible.

Then who knows, maybe even electrical cablesπŸ˜€

Thanks for all the advice and support guys

Cheers

Bill

User
Posted 09 Dec 2020 at 19:50

Hi All

Almost four years post RARP

Update:

I just had latest PSA at 0.02, that's three in a row after three years of <0.01 so hopefully it's settling there.

Structure wise I've been self Catheterising since the June dilation and have progressed to an 18f most of the time. After the first six weeks I was told to go from twice to once a week but it quickly became to difficult and I reverted back to 16f and not always successfully. I have gone back to twice a week now and back on 18f. Still peeing like a horse so worth the effort.

ED wise not much improvement but not giving up on that either. 5mg/day Tadelafil topped up with approx. 75mg Sildenafil as and when needed. Still excercising daily with the pump too.

So all in all still good news and living with the side effects of RARP but the ED is becoming depressing.

All the best to you all.

Cheers
Bill

Edited by member 09 Dec 2020 at 19:52  | Reason: Not specified

User
Posted 09 Dec 2020 at 21:55

Bill 

Great news really pleased for you, long may it continue .πŸ‘

Thanks Chris

 

 

User
Posted 09 Dec 2020 at 23:38
Good update - whatever you are doing, keep on!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jun 2021 at 14:45
Hi All

Update 4.5 years post RARP

My thread has been quite since my last follow up review which is a good sign.

Latest PSA 0.02 again, that's four in a row following three years <0.01.

Cathertirising continues and is no problem at all now. All the difficulties in the beginning were obviously just about technique, in particular mental control of relaxing the sphincter.

ED wise, recovery seems to have plateaued but is not total and practice continues.

All the best to all especially those who are struggling and those who are supporting them at what ever stage they are at.

Cheers

Bill

User
Posted 10 Jun 2021 at 14:54

Bill 

Great news,long may it continue. On ED, never give up, I still get surprises seven years on.

Thanks Chris

User
Posted 10 Jun 2021 at 21:24
That's a great update Bill πŸ‘
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jun 2021 at 22:42

Great news Bill.

Ido4

 
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