Overload

Thanks Lyn,

The conversations with both consultants were non committal  about success of removing absolutely everything, due to invasion of seminal LHS vesticle. The comment from one post-op about the OP being difficult also re-enforced this so I suspect issues will arise due to the PSA of 24.1 pre-op, hopefully not....But hope hasn’t worked this year..

Currently unaware of what they will be looking for post op with pathology, and although a negative margin is something I am aware of the proximity to other parts is concerning.

I have two deep aches sans derrière that I will mention at the next meeting, this maybe just pressure sores due to lack of activity currently ( and not wanting wounds to bleed again) and although have been scanned have my doubts about that process too! (As attending nurse/operative could in no way explains the image I watched while the body scan was being carried out)

I am grateful for the dialogue, as I have not had that much actual talk time with anyone and it is beyond surreal!

We bought a car recently, and spent more time buying that than I have actual clinic time with consultants/doctors with this F’ing thing!

Hope you and yours have a non PC new year!

Buzzy

Ahh...Err....Ughh!

☹️

TTFN

Lyn,

Thank you, that’s what I have been trying to figure out, how to measure the next bit against the previous bit (Surgery). I.e the success of the choice I made.

The PSA for me has been a worry as throughout both doctors, three consultants and the nurses I have spoken to have all said it was “Very High” in a way I have interpreted as “Oh really THAT high...oh dear....” one nurse even said that it was “unusually high, double the level we normally operate on”... hence the trepidation... and most cases on the forums are below 10 ish and are having the operation at that level.

This is still so new and I haven’t really had many meaningful conversations with the clinic as everything is so rushed and COVID safe. Didn’t really get a proper look at the imagery either.

What role does Testosterone play in all this? Is it bad to have too much, and why isn’t it measured at the same time as the PSA if it is? Is it best to vigorously exercise causing the generation of more, or be sedate?

Have a good new year, and very much thanks for the knowledge, sorry you know this stuff.

Buzzy

Edited by member 31 Dec 2020 at 11:22  | Reason: Not specified

The consultations I had suggested that the type and position of my infestation it would have been unwise to leave it in-situ. The conversation around RT was that the MDT recommendation was surgery, and if required RT.

Luckily or un-luckily the whole pace of the diagnosis and treatment timeline was determining the course, and I thought I had enough information to trust the judgement of “My” medical advisors; compared to whome I knew doddle-squat about the subject.

One conversation suggested RT alone would not shift what I had due to the proximity of other anatomy, and removal would spare duress on those parts if RT was needed. In short the get it out and deal with the consequences option was time related and if I delayed that would no longer be an option. Especially due to covid etc.

Its done now and I have a “Knee Wee”...

Lets see how it went when I can actually speak to someone!

My only other option would be wait till 20th January for the next surgical list, hopefully I will be past most of this rubbish by then.😀

Buzzy

Edited by member 31 Dec 2020 at 13:35  | Reason: Not specified

I am having pains in the groin area around the perineum when I sit, although I am off the painkillers now (Yippee!😀)

And am wondering if I should take some Ibrubrophen to reduce the swelling, no doctors or clinic available till next week.

Not sure why this is swollen and sore when I sit down after nearly 10days after the op. (Time fly’s when you are having fun!)

I may have a big bruise, but it’s a bit dark round there...

Is this anything to do with the lymph nodes being removed, and fluid not draining?, any thoughts appreciated.

Sitting in a hot water bottle helps in the evening, but I would rather not poach the poor redundant testicles too much as they have been through so much recently....

I get the clips out Monday, and hopefully the painful bit on Thursday; is this a fun experience or should I take a good leather belt to bite down on? 😋

Is it a “Whip it out and send you home?” Or will there be cameras, lights and more prodding?

Buzzy

Buzzy 

I had my Catheter whipped out and have lived with the consequences for the last six plus years. If it gets stuck coming out insist on getting a urologist. Had twelve removals and all have been pain free, even the whipped out one.

Thanks,
been Mostly Ok but today have had a couple of issues.
The Leg bag I changed this morning and again it stopped filling about 1hrs later and was slow all day.
After a good walk this afternoon it was 1/3 rd filled with blood, er not good☹️

While I was trying to sort this out I think I realised what the issue might be, and yep raising the bag higher up over the bladder proved the point; a large volume of air rose up the tube and into the bag! The flow cleared and resumed normal after that😀

Looks like no-one mentioned about introducing airlocks into the plumbing, from the long connecting tube when you plug a new one in?

I probably introduced this changing the leg bag and have been a human barometer all day?
Presumably my pipes have been air locked all day?

Things have returned to normal now, but surprised this wasn’t mentioned, there is a simple non-return valve in the bag but that’s below the 300mm (plus catheter) tube. More than enough air to block a fine pipe with a low static head pressure and some bends in it!

Buzzy

Edited by member 04 Jan 2021 at 00:06  | Reason: Not specified

Don’t know but it cleared after that..

Maybe the Catheter is slightly damaging the soft tissue in the bladder as it did happen before a few days ago?

Itching to get this out now as still can’t sit down properly☹️

Hopefully staples out today, and I won’t deflate like a used party balloon when they are removed!?😀

At least the clinic should be answering the phone today.

Buzzy

Hi Chris, thank you.

If you have ever made or seen a “Cartesian Diver” or manually bled car brakes you can see why leg bag changes introduce air and why this is an issue. So from an engineering point of view for fun understanding the issue..? 😀

The small diameter catheter and the 300mm/5mm of pipe in the leg bag introduce a limited volume of compressible air into the “hydraulic system” as you swop bags and drain the catheter ( above the non return valve) If it was a central heating system it would be an unvented system not designed to have air within.

The air can get trapped in the catheter simply due to surface tension and will resist the poor fluid “Head” pressure from the bladder quite effectively, compressing and resisting the downward flow of urine as the air will compress, the fluid won’t . Bends and kinks will make this worse. Any air in the bladder will rise to the top of the fluid but the bladder is mainly empty as it’s drained so it will stay there and possibly effect the input tubes as well? (not much static fluid pressure to force the air out either?)

What the effect of air in your bladder is I can only guess, but I don’t think it’s normal or healthy if it builds up unchecked? Air in any fluid system allows movement or sloshing about of the fluid, that would not happen if fully filled. The dynamic pressure would also vary considerably especially if you are out exercising and change altitude as I have been. Pressures could spike higher than atmospheric under certain conditions within the bladder, not sure if this would be OK or not?

I have had blood twice, (OK immediately before on both occasions) and both times after changing the leg bag and exercising; the bag has failed to drain properly afterwards for a few hours and has been Mateus Rose. I have removed a large volume of air to clear the issue after and then OK. But loads of others haven’t had issues so??

I have had problems with fine tubes and pumped water cooling systems over the years, and it’s amazing what about 100mm of air in a small bore pipe can destroy, I don’t want it destroying me!

Anyway hopefully being removed on Thursday?😀

Then what?....

Oh!...pull-up pants and toilet training?

Buzzy

P.S The whole Catheter design is annoying me really!

Edited by member 06 Jan 2021 at 01:30  | Reason: Not specified

Buzzy 

That was a very comprehensive reply. I have now had a suprapubic catheter for almost four years.  I do sometimes get air in the bladder when flushing the Catheter, urinating air and urine is a strange sensation.

I was 99 percent dry 4 days after Catheter removal, some guys are dry from day one, others are not as fortunate.  I quickly learnt to tense the pelvic floor muscles when standing. I also learnt when sitting at my desk picking up something off the floor made me leak. 

Hope all goes well.

Thanks Chris

Hi Buzzy,

Well that brought back memories of my catheter (and bleeding brakes).. watching debris or air moving through the tube while sat on the toilet. I had the urge to pee too and quite a lot of urine bypassed my catheter the night before my TWOC.

Had the RALRP Op on 23rd Dec 2020 and the Catheter out on the 7th Jan 2021.

I did a trial with PG and Earl-grey tea days, the early grey tea days I am not wearing out the toilet.

Earl-grey tea is palatable and doesn’t cause the irritation and twitchy-ness off the bladder, good old PG does 😀

On the whole I feel more in control, even if the odd glass of red wine may happen to be the only thing to rehydrate with!

I have now been able to move down to the Tenna 1 pads during the day, and no longer feel like a duck when I walk; however I have still

to work out the best night time option as things settle down. Suggestions other than the full blown “Potty pants” as my grandmother used to call them would be welcome please?

Pelvic floor exercises..

My clinic says don’t do the recommended routine in the leaflets, do 10 “fist squeezes” every time you drink; and don’t do the long “Crunch” as recommended as this creates the wrong muscle fibres. What other routines have people been told?

Buzzy