GregJ’s Journey - To Infinity And Beyond!

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

Thanks Chris 

Tomorrow will be a better day Greg.🤞🤞🤞

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

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.

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

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 :)

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.

Another totally dry night, which I really appreciate. 

It seems if I’m sitting still, watching TV or laying on my back to sleep, there is zero leakage. I can cough, sneeze and stand and walk a few steps no problem but then say I’m making a cup of tea, half way through the kettle boiling there will be a little leak. Seems so random really. 

I’m using two pairs of disposable pants per day, I could probably get away with just using one but I like to feel fresh so I wash often and change the pants half way through the day. I got the pants from Age UK, only £4.50 for a pack of 8 (9 for the medium size) so a great price. They are amazingly absorbent and feel dry instantly after a small leak. 

I’m two days post catheter removal now so although my ridiculously impatient mind is telling me I want to be perfectly dry now, I keep telling myself I should be happy with where I am right now. 

Called my main contact nurse to check I should definitely be on the Tadalafil tablets now and waiting for her to call me back after checking with urologist. 

My abdominal muscles still hurt and ache but I guess this is just normal healing from the surgery. As Stephen Fry said after his RP … you’ve been stabbed 5 times, all be it under anaesthetic, you’ve still been stabbed! 😊

After all said and done I’m definitely in a far better place than I was even just last week after the second hospital stay for the internal bleed. 

Onwards and hopefully “upwards” to infinity and beyond! 😊👍

Greg, I am never sure about saying normal, it is frequently mentioned and I was still passing a small amount of blood, scabs and debris at least six weeks after surgery. A few weeks after surgery I also passed a kidney stone, that got my attention.

Brown blood is again frequently said the be okay, and bright red blood should be checked out.

Thanks Chris 

TBH Greg, I think many of us feel a bit abandoned after treatment is finished. I know I do, but I think youve got to be proactive in addressing any issues you have to get them sorted.

You know about my issues with Peyronie’s disease, I would have waited probably at least a year to get an an appointment with a Specialist on the NHS, which is why I decided to go ahead and pay privately to get a diagnosis…and now I’ve got what I need to try and get it fixed….on the NHS🤷🏼‍♂️

Also my joint stiffness and aches were really beginning to really affect my QOL…every joint in my body was affected. I searched high and low for a solution as it was getting to me. I’ve come to the conclusion through my own research that the joint ache is caused by muscle loss because of this damned HT treatment. I was already going to the gym but my son told me you have to push yourself as far as you can to build muscle, so it’s not reps that count but the weights you’re lifting. Also asking for advice on here someone mentioned swimming…so I’m now doing that several times a week. I can honestly say I am really beginning to feel a difference. In my view anyone on HT should be given advice and even prescribed a gym membership along with a strict program to adhere to to prevent muscle loss. if you’re in a manual job(we have a landscape gardener in our Maggies Group) you’re  probably working your muscles every day…but if your retired like me maybe not. I was cycling a lot but now I think that maybe that I was exercising wrong so hopefully this new regime will help me.

so, I’m going to keep pumping and pushing in the hope it’s sorts both these issues. I can live with the rest😊

So, if you’re worried about ANYTHING, do you own research and try things out to help. Maybe it shouldn’t be like this but that’s what I’ve found. 

All the best…and keep smiling, it helps immensely 😊

Derek

Edited by member 15 Jul 2023 at 17:55  | Reason: Not specified

If you try to do too much too soon, you can delay your recovery. The risk of hernia is also significant. Try not to stress so much; it isn't very helpful.

I would say you certainly ARE heading in the right direction Greg. When you think where you were after surgery it seems to me you have done very well.
I hope nobody thinks I was suggesting you start running marathons(or doing anything physical for that matter) when I said I think you need to be proactive with your recovery! What I meant that before and during treatment I was given lots of information, but since RT finished I feel I have been left to myself to deal with the side effects of the treatment. Only by being proactive in finding information and taking appropriate steps to aid my own recovery have I managed to deal with some of them. This forum and Maggies have been an immense help in doing this.

I obviously can’t speak from personal experience, only from the many guys I have met through Maggies that have had surgery and they ALL say the same…you need to be patient and not expect too much too soon,.

I’m sure you will begin to see real improvement soon.

Right, off to watch the tennis…come on Carlos!

Derek

Well done, unfortunately I will never get another one unless anyone who has not had nerve sparing can tell me otherwise.

Mind you, I did find this awesome willy massager that works on floppy willies.

Did they tell you that your op was nerve sparing?

Well done!

Steve

That must have been quite pleasantly surprising for you Greg after all you’ve been through.

Congratulations ….and onwards and upwards seems VERY appropriate! 🤣🤣🤣

as my Pharmacist said to me as he handed over my Viagra ‘All the best!’😊

Derek