I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
<123

Me as well

User
Posted 26 Dec 2021 at 15:32

Five days on from RALP

Although the catheter is a pain in the arse (well, a "pain" in the dick) I have got use to it and to be fair it is not as much an issue as I thought it was going to be. I am though very nervous of catching the pipework on something so am ultra careful when walking around etc. I am drinking at least 3 litres of water a day and am regularly emptying my day bag. The content of which is getting clearer as the days pass. I am also walking around my house as much as I can to ensure that I remain fairly fit. The bruising around my stomach area where the 7 puncture wounds are is much less than it first was and though there is still some tightness ( presumably because the skin is pulling together and mending itself) it is not a problem. Whereas at first I found it difficult to stand up straight I can now do so without my midriff feeling uncomfortable. Still find  it slightly uncomfortable though if I fully cough ( a half cough is fine!).

The laxatives I was given are working well and my bowel movements are as good as they were pre surgery i.e. daily.

So, all in all, not a bad place to be 5 days after major surgery.

 

Ivan

User
Posted 30 Dec 2021 at 15:42

Catheter removal day (30/12)

 

I attended Addenbrookes at 10 AM today for the removal of my pipework. Mixed feelings really as though it is inconvenient having it in I was aware that having my catheter removed could result in me being incontinent. To begin with, my puncture wounds from the operation were duly inspected by the nurse and given the all clear. She then invited in a colleague and explained what exactly was going to take place.I was told to strip naked, lay on the bed with my back on the mattress and whilst the second nurse chatted to me the first nurse ( a matron in old money) drained, using a syringe and the drain port on the catheter pipework,  the saline solution from the balloon holding the catheter in place. Once the balloon had been emptied, I was told to turn my head towards the wall and cough 3 times. During my second cough the catheter pipework was removed. No pain or sensation at all. So, a win-win. For those wondering why I was told to cough, it is because coughing relaxes the pelvic floor muscles and makes it easier to remove the catheter.

Having got redressed, "Matron" told me that I would need to show that I could pass urine and could empty my bladder before she would allow me to leave her care. She pointed out that because there were no spare beds available she was very hopeful that I could do both. I was told to drink as much water as I could, to wander around the hospital (but not the wards area)  and to try and  urinate at least a couple of times. I was duly sent on my way at around 10.30 am and told to call back at 12 noon. During my wanderings, I drunk at least 10 disposable plastic cups of water but only managed to dribble when I went to the toilet. Returning to the unit at the prescribed time, I mentioned to "Matron" that I had not been able to go too much and she suggested I try again. Interestingly, whether it was her words "you must go"or the fact she was standing outside the toilet door, but go I did and with a reasonably good stream.  The trouble was I was still leaking (thankfully I had a Tena pad in my underwear) walking back to her room and continued to do so when standing up or moving around (sitting down was fine). "Matron" suggested that my pelvic floor muscles were not strong enough ( I had been undertaking the required exercise regime daily for 6 weeks prior to my surgery) and said that I would have to continue to work on them. After checking my bladder level (it contained less than 1 ml of fluid), after giving me a couple of pairs of incontinence pants( I had only bought one spare pad with me) and further instructions and guidance I was, at 12.50 pm, sent on my way.

Based on my experience, my recommendation  when going to have your catheter removed is that you take at least one change of underwear, at least 4 pads and a couple of pairs of incontinence pants.

 

Ivan

 

 

User
Posted 30 Dec 2021 at 15:48
👍

Although I think it was a bit harsh of matron to suggest that the leaking was your fault - at this early stage, it has absolutely nothing to do with your pelvic floor and everything to do with the major op you just had!

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

User
Posted 30 Dec 2021 at 16:10

Thanks Lyn for your response and for your comment that the present state of my pelvic floor muscles might not be the reason for my present incontinence level i.e. it is the aftermath of the operation I had on 21/12.

 

By the way, am I correct to assume that you are/were a nurse, perhaps a matron?

 

Ivan

Edited by member 30 Dec 2021 at 16:11  | Reason: Not specified

User
Posted 30 Dec 2021 at 16:32
Ha ha ha - no, the matron label was gifted to me by Bollinge for some unknown reason. I am just a wife & daughter but with an academic background and an almost photographic memory for research papers and mostly useless data! I can tell you exactly what was said in a team meeting in 2003, how it was minuted and where those minutes are stored ... useless in a pub quiz though as I have no ability to recall capital cities, who was in what film or which singer sang what :-(

I think the last thing a man needs on TWOC day is to be made to feel like he somehow didn't try hard enough - it is not helpful. When medics make comments like this, it implies that men with incontinence only have themselves to blame and, for a man with permanent incontinence, this can have a massive impact on a) their mental health and b) how others respond / perceive them.

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

User
Posted 30 Dec 2021 at 17:41

I am a retired nursing sister and don't have nearly the knowledge that Lyn has on this subject. As I am now the wife of a prostate cancer patient I am always interested in her views.  I have worked with many medics over the years who could learn a lot from her posts and the sensitivity with which she delivers them. 

User
Posted 31 Dec 2021 at 10:02

Interesting development:

After my catheter was removed yesterday I had virtually no bladder control and for around 8 hours was emptying my bladder before getting anywhere near the toilet. Part of the problem was I didn't know I wanted to go and just leaked constantly each time I moved, bent down etc. I got through 3 pads and 2 pairs of incontinence pants in the space of 3 hours. Then all of a sudden, even though I was still drinking large amounts of water, I stopped leaking. That, of course, made me start thinking that perhaps I had a blockage but , fortunately, that was not the case. When I had the urge to go I was able to go to the toilet and go ( with the flow of a 16 year old) without any leaks whatsoever. That continued throughout the night, with the urge to go happening every 2 hours or so and with me being able to urinate in the toilet with no leakage. At the moment I would say my continence level is at least 95%. So, an excellent result, especially when one takes account of my lack of any control for a number of hours after my catheter was removed.

 

Ivan

User
Posted 31 Dec 2021 at 16:03

Congratulations on your interesting development and what a relief. Wishing you all the best for a speedy recovery and a Happy new year

User
Posted 31 Dec 2021 at 16:37

Ivan, this sounds like great news…really hope it continues this way for you 👍🏽
thank you for the catheter removal update, really interesting for Rob who will have his removed next week. Catheter been flowing really well and clear until yesterday when pink again…think we’ve done too much walking 🤦🏻‍♀️ rest again now!

Wishing you all the very best, Happy New Year! x

User
Posted 31 Dec 2021 at 16:48

If Rob's catheter removal goes as well as mine did it will be a walk in the park.

 

Interestingly, I didn't think having the catheter in bothered me too much but since it was removed I feel in a much better place. More lively, more enthusiastic and actually doing things rather than just moping around. And, yes, undertaking too much exercise when the catheter is in is probably the cause of Rob's pink coloured urine. My urine was tinged a little pink for a couple of hours after my external plumbing was removed.

 

Have a good New Year yourselves and let us all know how things progress.

 

Ivan

 

 

Edited by member 31 Dec 2021 at 16:58  | Reason: Not specified

User
Posted 31 Dec 2021 at 16:53

Thanks Jeremys and yes a relief.I did expect some leakage after the catheter was removed but did not expect to be totally incontinent- which is what it felt like. When I regained control of my bladder after 8 hours or so it was almost like a button had been pushed and reset the bladder continence level.

 

A Happy New Year to you too

 

Ivan

User
Posted 02 Jan 2022 at 00:12

I don't know what the sawbones have been up to (mine, telling me why the Retzius approach is unnecessary, muttered something about "sparing more Retzius structures") - does anyone know? - but continence outcomes have improved across the board. Amazing news well represented here. To me ED was important, but I see UI is more so and is less curable with eg needles (although, I would rather have an artificial sphincter than an implant). So, well  done the sawbones upping their game.

User
Posted 20 Jan 2022 at 09:19

One month on from Prostate Removal surgery and 3 weeks on from removal of catheter

 

Well, time does fly when you are having "fun" and both the surgery and catheter removal is like a distant memory.

That said, my continence is "only" around 80% but is  virtually 100% when I am in bed and sitting down. I am, as per my specialist nurses instructions, undertaking pelvic floor muscle exercises around 10 times a day and still daily drinking around 3 litres of water. My puncture wounds and bruising, which were quite extensive after surgery, have almost disappeared  and apart from a slight tightness now and again on the right-hand side of my torso I have no other issues. So, all said and done, not too bad.

I was contacted yesterday by Addenbrookes and a telephone consultation for a post-operation update (discussing histology etc) has been arranged for 03/02/22. Hopefully, I will be told that my prostate removal resulted in negative margins and that the grade of cancer is the same as it was when assessed under the biopsies.

 

Ivan

User
Posted 20 Jan 2022 at 09:35

Glad to hear you are on the mend. Hope the histology goes well. Remember to really take it easy and not carry stuff even though you are feeling stronger. Im sure continence will improve. My consultant (who I think might have been the same as yours ) told me that continence also has a lot to do with urethal length and he was pretty sure I was going to be ok post op as mine was of sufficient length. You may want to ask him about this. But keep on doing the exercises. I had my first accident for a while the other day when i tried to squeeze a fart so always have to be on guard.

User
Posted 20 Jan 2022 at 10:24

Thanks Jeremys

 

Boasting again, Jeremys? I am sure mine is as long as yours !

I actually had my surgery on the NHS at Addenbrookes by a high volume surgeon who also has a private practice.

Yes, although I have started to lift items that are light in weight I do not intend to have a Thai masseur  walk up and down my back ( Know what I mean?)

 

Yes, I know what you mean about not trying to pass wind. I have decided to just go with the flow wherever I am.

 

By the way, are you now fully continent?

 

Ivan

User
Posted 20 Jan 2022 at 13:46

Great news Ivan.

Really glad things are going well. Best of luck for post op histology, I’m sure everything will be really good.

I’ve just updated my thread, we’re having a good day too so fingers crossed it continues for us all.

Thanks for all your help since the op, it’s been a pleasure sharing the same op date 😂😂

 

User
Posted 20 Jan 2022 at 13:52

I have just commented on your thread, Elaine, and am pleased that everything is going well for you too.

 

Yes, me and your other half were surgery bedfellows.Different beds mind you!

 

Ivan

User
Posted 20 Jan 2022 at 15:55

😂😂

User
Posted 03 Feb 2022 at 10:41

Histology Update

As previously arranged, I was phoned today by a consultant from Addenbrookes to update me with the findings from the biopsy on my removed prostate. It was confirmed that the original grading (Category 2, Gleason 3+4=7, with "only" 5% Gleason 4) was correct, with  most of the cancer found on the top right hand side of the prostate. There was less cancer on the top left hand side and even less dotted throughout the prostate. It was further confirmed that the operation resulted in negative margins (i.e. all the cancer was removed). The consultant did say that the cancer was bulging out of the prostate on the top right hand side and that in the hospitals opinion the operation was done just in time to stop the cancer from breaking out. So, an excellent outcome.

I will undergo a PSA blood test next week and, depending on the result, another one 4 months after that. Result dependent, the PSA tests will then occur at 6 month and one yearly intervals.

 

Ivan   

User
Posted 03 Feb 2022 at 13:00

Brilliant news Ivan.

Sounds like everything has gone really well and you are certainly on the right track now. Rob obviously the same timeline and is also doing really well…it’s been so much better than we expected.

Best of luck for your PSA test. Rob has his on the 16th…he still has the hormones in his system though so won’t give a true reading at the moment. Every 3 months it is for him at the mo.

Elaine 

User
Posted 03 Feb 2022 at 13:23

Thanks Elaine for your kind words.

 

It is good that Rob is also doing well and, as you say, it is even better that he is beating your expectations. It just goes to show that there is usually light at the end of the tunnel and taking quick affirmative action is often the best way forward. Something that I and you/Rob have done. Give him my regards.

 

Ivan

User
Posted 03 Feb 2022 at 22:07

Great news on the histology Ivan. Very pleased for you

User
Posted 15 Feb 2022 at 09:26

Since a milestone has been reached I thought I would post an update on my narrative.

 

Seven weeks after surgery and just under 6 weeks after my catheter was removed, I have, for the last 3 days, been 100% continent. For reference purposes, I was totally incontinent for 6 hours after the removal of my catheter, was then 75/80% continent for a few weeks after that and then gradually gained more continence. Early last week I was around 95% continent and then, all of a sudden, had no leakage at all- even when coughing! So, a result.

ED wise, I am having orgasm's and get semi-hard but, according to the specialist nurse assigned to me, at this stage of my recovery I will have to up my Tadalafil from 5 mg to 20 mg a day  to return to as it was before surgery.

 

Ivan

User
Posted 15 Feb 2022 at 10:43

Ivan. If I were you I would check again on that Tadalafil dosage. My understanding is that 5mg is a daily dose. You could take 20mg for an Event Dose but then I am pretty sure that you should then lay off it for 3 days afterwards.

Personally I take 5mg before sleep (to minimise any poss side effects) and then I supplement with 50mg Sidenafil (Viagra) for Events.

User
Posted 15 Feb 2022 at 10:48

20mg a day Tadalafil would also require 4 packs a month as a perscription. Highly unlikely to be signed off by the NHS and comparatively pricey if you are paying yourself. You would also be increasing your personal risk to any side effects.

User
Posted 15 Feb 2022 at 11:22

Thanks for your message, ProSixty

Yes, you are correct and for an "event"  I would need to take 20mg and then not take anymore for a few days afterwards. Because I don't like taking medicines unless I really have to, I took 5 mg a day for 14 days after my catheter was removed and  then stopped taking it. The consultant who phoned me  a couple of weeks after I stopped to discuss the findings of my sliced and diced prostate mentioned that I should take Tadalafil for a minimum of 2 months after surgery to aid nerve recovery and to improve blood flow. So, I started taking it again. The consultant also mentioned that I should keep my member in working order to assist the aforementioned blood flow.

I may well return to "normal" with regard to erections as all the nerve bundles on the left hand side were spared and 80% on the right.

 

Ivan

User
Posted 15 Feb 2022 at 11:30

Great news Ivan, really hope it continues that way for you. Rob has been pretty good since catheter removal but we had a few social events over the weekend so drank moderately 3 consecutive days….day 4 he had a leak. I think caffeine and alcohol will definitely need to be monitored but not always easy!

Take care 

Elaine 

User
Posted 15 Feb 2022 at 11:46

Thanks, Elaine, for your message.

Yes, it does appear from reading the other messages on here that alcohol and caffeine does induce leakage issues if over done. Fortunately, I don't drink alcohol or drink coffee!

 

I am pleased to hear that Rob is progressing nicely; long may that continue.

 

Ivan

User
Posted 06 Apr 2022 at 11:01

Post surgery update

I had a high sensitivity (Complexed) PSA blood test on 05/03/22 and was scheduled to discuss the findings with Addenbrookes on 15/03. The meeting was subsequently cancelled and as a result my PSA test results were not released to my record on "My Chart" at Addenbrookes. I contacted the hospital yesterday and a new consultation was arranged for 01/06. They agreed to release my 05/03 PSA results and advised that I would need to undergo another PSA test before that 01/06 consultation. My 05/03 PSA results are:

Less than 0.04 ug/L

 

So, looking good and, hopefully, the next PSA results are the same.

 

Ivan

 

User
Posted 06 Apr 2022 at 22:47

Fabulous Ivan! Long May it continue. X

User
Posted 07 Apr 2022 at 16:55

Great news Ivan, really happy for you 👍🏽 X

 
Forum Jump  
<123
©2022 Prostate Cancer UK