GregJ’s Journey - To Infinity And Beyond! - - Page 6Advanced or metastatic cancer

User

Posted 09 Jul 2023 at 21:32

Gregj, sorry to hear this ,as said you couldn't make it up. Hope things start to improve soon. Keep us updated.

Thanks Chris

User

Posted 09 Jul 2023 at 21:42

Cheers Chris. 👍

It’s got to be smooth sailing from here on out now surely? 😊

🙏🏻🙏🏻

User

Posted 09 Jul 2023 at 21:46

Tomorrow will be a better day Greg.🤞🤞🤞

User

Posted 09 Jul 2023 at 21:49

Thanks Derek

I’m dreaming of that pint in a week or two to celebrate. I can almost hear the bubbles in the glass 😊👍

Cheers

Greg.

User

Posted 11 Jul 2023 at 16:49

So, catheter out earlier today, which wasn’t as bad as I was expecting I have to admit. Not the most pleasurable thing I’ve ever done but not too bad 😊

Little bit of leakage in the time since, but I did manage the two hour journey home without any major incidents. I was definitely ready to go by the time I got home as there was certainly a build up of bladder pain, I was managing to hold it, but it was all I could concentrate on I have to say.

I guess we have to hold it as part of the bladder retraining?
How long are we supposed to hold it for?

I’ve had very little advice on that to be honest so I’m not sure what I should do for the best. The leakage I’ve had are at the strangest times, not when I’m coughing or bending or standing, like I imagined it would be, more maybe after 4 or 5 steps once I’ve set off walking. That has surprised me I must say, I thought there would be triggers but it seems a bit random so far. Anyone experienced the same?

Also, a small amount of blood sometimes when I go but the nurse said this is completely normal and could last a couple of weeks yet. Anybody any advice or reassurance to offer? 😊

Some good news on bloods (which they took again today) my hemoglobin has risen to 118 so definitely on the right path. It dropped as low as 70 when I had the initial internal bleed but has risen between 5-10 each day, which is reassuring. Normal levels for an “old man” is 140 and above so I’m nearly there. Plenty of liver and black pudding to come, to help the levels. Nom nom nom nom 😁

Hopefully I can feel that my recovery can start properly from today as I’ve felt in limbo for the past 12 days, since the surgery.

Take care

Greg.

Edited by member 11 Jul 2023 at 16:51 | Reason: Typo

User

Posted 11 Jul 2023 at 20:21

Greg, pleased it went well. I was the opposite to you, I could walk without leaking, then when I stopped I would leak. I was lucky to recover my continence very quickly. I would just hang on a little longer when I got the urge to go. You no longer have your upper sphincter, so I am not sure where the pressure builds up if hold on too long. You certainly don't want to put any extra pressure on the new joint.

You can expect a small amount of blood,a few clots, some bits of scab and debris over the next few weeks. Guys often report passing blood, when we ask questions quite frequently they have been doing too much.

Hope all goes well from now on.

Thanks Chris

User

Posted 11 Jul 2023 at 20:24

Hi GregJ,

Congratulations - you've done really well to get the catheter out without too much grief. If you were then able to travel for 2 hours without leaking, you're doing VERY well!

I had bad incontinence after the catheter was removed, but it's slowly getting better. Have you been told to do Kegel exercises to strengthen the muscles? There are phone apps you can get to show you how to perform them and to remind you when they're due (typically, three times daily). Leaking when doing any activity can be a problem, but especially in the early days.

Best wishes,

JedSee.

User

Posted 11 Jul 2023 at 20:52

Hi JedSee

yes I was told to start the Kegels now the catheter has gone. I started them about 4 months ago, 3 times per day, then stopped whilst I had the catheter of course.

I set an alarm on my phone to go off 3 times per day, morning, afternoon and evening. I do sets of 10 holding for 10 seconds and 50-100 “quick” squeezes of a second each. I read that on a USA prostate website. They felt strong before my surgery but doing my first set today they felt really weak again, like I was starting from scratch. I wonder if the internal bleed into my pelvis will have affected them in some way, either that or not doing them for 2 weeks means I’m back at square one.

Time will tell … I’m so impatient, I just want to be 3 months down the line and see where I am then. 😊

I’m holding on to it as long as I can, sitting on the couch, it’s ok I guess. It’s so difficult to gauge isn’t it, having never had anything like this before.
I know after the surgery complications it could be a hell of a lot worse so I am thankful for little mercies and trying to keep a sense of humour.

I’m a bit worried about going to bed to be honest, apprehensive about what might happen…gulp.

I ordered some night “man nappies” a while back, opened them tonight and they’re …. absolutely huge! That’ll be a giggle putting one of them on! 😂

cheers

Greg.

User

Posted 11 Jul 2023 at 20:58

Thanks Chris

I’m not holding it until it causes any pain, I’m just trying to delay before going. I’m maybe trying to do too much too soon am I?

The small leaks come at the oddest of times when I least expect them. Very odd.
I’ve read here many times that were all different, so it seems.

There’s been blood twice tonight, only a tiny amount so I guess I just keep an eye on it over the coming days and weeks. Thanks for the reassurance

I just hope that I can now start proper recovery instead of going back into hospital every evening with yet another problem. My GP rang today as he’s been on holiday for a fortnight and was catching up with what had been happening… I’m sure my recent medical notes gave him some interesting reading! 😳

Take care

Greg.

Edited by member 11 Jul 2023 at 21:04 | Reason: Not specified

User

Posted 11 Jul 2023 at 21:31

I’m so pleased it all went well today Greg, now you can start to concentrate on your recovery!
I have no personal experience of recovery but speak a lot the guys in my Maggies Group about their recoveries and what I get from them is you need to be patient and take things slowly, probably even more so because you’ve had a hard time of it. I had lunch with one of them today who is 3 months down the line and he’s doing very well so hopefully you will be the same.

Onwards and Upwards(although that might have to wait a while🤣🤣🤣)

Derek

User

Posted 11 Jul 2023 at 21:38

Those night time pants are quite fetching aren't they :) I bought some cheaper ones and my wife pointed out that they had frills - they were unisex but certainly make a statement - Benny Hill comes to mind :)

If you are like me you will find sleeping to be OK - I wake up 2 or 3 times a night knowing I need to go so have a urinal bottle by the side of the bed. I swing my legs out to sit on the side of the bed, grab the bottle and put my penis into it and then stand up - flow starts immediately.

Over the last couple of nights (8 weeks post RARP) I am down to 2 times and last night was just 1 - so improving all the time :)

User

Posted 11 Jul 2023 at 21:41

Haha cheers Derek

Now I’ve restarted the Tedalafil hopefully I might get some upward momentum in the future 😂

Thanks for the chuckles, I’m really trying to concentrate on keeping a sense of humour, if we didn’t we’d be screwed wouldn’t we.

I feel 55 going on 95 tonight but I’m looking forward to brighter times in the future 😊👍

Cheers

Greg.

User

Posted 11 Jul 2023 at 21:44

That’s great to hear Steve

Yeah, I’m sure these night pants are made for elephants .. not ‘uman beans! 🤣

It’s certainly a mini adventure so let’s see what tonight brings. Just hope I get some sleep as I’m still so exhausted after the past 12 days

Cheers

Greg.

User

Posted 12 Jul 2023 at 08:45

Well, the first night didn’t go too badly actually. I’m amazed.

I was strapped, padded and covered like an oven ready turkey (?🤔) going to bed. I was in bed by 10.30pm , I stopped drinking at 8.30pm as I’d already had 3 litres through the day.

I woke up at 4.50am to go to the toilet but other than that I slept pretty much right through and my padding was bone dry this morning. I imagine there might have been some tiny leaks but there’s still blood in my urine and there is no sign of anything at all in the night pants.

The trip to the loo at 4.50am was quite heavily tinged with blood, which I was a little concerned about, but nothing anywhere near as much since that.
I guess that is normal, even 13 days after the op?

I’ll keep an eye on it and I’ll mention it to my CNS if it continues or gets worse.

All in all I think I’m quite happy with that for the first night …. Although, I’m often accused of being a pessimist… so there’s plenty of time yet!! 🙄🫣🤣

(I hope it’s ok to document my progress on this thread? I just want to use it as a reference to look back on as time goes by.)

Take care

Greg.

User

Posted 12 Jul 2023 at 10:25

It sounds like your continence is doing very well. Blood and debris is still common at this stage.

Documenting on a thread like this is a very good idea. Future readers will be able to read exactly what recovery is like, blow by blow, not just the edited highlights.

Dave

User

Posted 12 Jul 2023 at 10:56

Thanks Dave

Now I’ve started drinking water through the day again I am starting to get the odd leak again when moving around the house.
Sometimes when I start to pee it seems to take a very long time to stop and the flow is often quite weak.

Hopefully things will improve as time goes on

take care

Greg

User

Posted 12 Jul 2023 at 11:11

I did have a question - you said that you had restarted Tedalafil but as you are still in the healing/recovery stage, are you sure that it isn't too early? I would have thought that would have waited a couple of months at least before using it but as my RARP was not nerve-sparing then it wouldn't work for me so I have no experience of it.

Just the thought of having an erection while everything is healing seems to be questionable - but i may be (probably) wrong :)

User

Posted 12 Jul 2023 at 11:34

Hi Steve

I was unsure of this so I asked many times during my hospital stays and A&E visits.

It was a nurse specialist at the operating hospital that removed my catheter yesterday that told me to start them again.
It an urology surgeon at my local hospital that stopped them after I was readmitted for the internal bleeding.

I think I’ll call my main contact nurse at my local hospital and ask her to check again with one of the urologists.

cheers

Greg.

User

Posted 12 Jul 2023 at 12:06

If you are lucky enough yo be prescribed tadalafil it is usually recommended to start taking it as soon as the catheter out. The tablets draw oxygenated blood to the area which helps speed up healing. You are very unlikely to have an erection but so what if you do - no harm will come to you. My husband had his first orgasm the day his catheter came out.

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

User

Posted 12 Jul 2023 at 13:02

This is an excellent post Greg so please keep it going. It’s so important that others can see both the good AND the bad…and things DONT always go smoothly. Sometimes it’s more difficult to post when things are not going your way but I have found that it helps both me and others to be able to talk about it openly.
Even though it’s not really relevant to me I’ve been following your post with great interest.

it’s sounds like you have maybe turned a corner so let’s hope it keeps going🤞🤞🤞

all the best,

Derek

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