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My husbands recent diagnosis of advanced prostate cancer

User
Posted 23 Dec 2021 at 16:19

Elaine

I have a permanent catheter and frequently get the feeling I want to urinate. The position of the catheter will affect the feeling of wanting to urinate. If the catheter is high up in the bladder urine will build up below the oulet in the catheter. A small build up of debris in the catheter can also halt the flow for a while. Pressure in the bladder will  usually push the debris out. As long as the bag is filling there should be nothing to worry about. I find lying down will sometimes help restart the flow. 

I was told Rosé colour urine was okay  Red wine colour needs attention. As already said a bit of bypassing frequently happens, if you get bright red clots coming passed the catheter get help. 

 

I am sure it has probably been mentioned but a small squirt of instilagel or hydrocaine down the eye of the penis at the side of the catheter will usually ease any discomfort. It costs £2-3 and can be issued by a pharmacist without prescription, someone did say Boots won't issue it without a prescription.

As always if in doubt get medical attention.

Tell him to take it easy but keep mobile.

Thanks Chris

 

 

User
Posted 23 Dec 2021 at 19:21

I think it is so important to have somebody with you when recovering post-surgery, not only to ensure you are drinking enough water and taking all your medication but to help, for example, picking things up off the floor you have dropped. Although I am not in any real pain bending down low is uncomfortable and only achieved by standing on one leg and using the other leg as a counterweight as I bend down. I could almost be a ballet dancer!

 

I haven't had a bowel movement since Sunday and I am sure I will feel better once I have passed a motion or 5. Passing wind makes you feel better, though perhaps it is not so good for the other person in the house.

I am a little off my food at the moment and I guess your OH is the same.

User
Posted 24 Dec 2021 at 07:27

Thanks for the reply Chris. His bag is definitely filling up so I guess that’s a good sign. He drank quite alot yesterday so he was constantly emptying it, still very rose though….hoping it will become a bit clearer today. Surgeon phoned again yesterday though and said that was fine too.

I did get some of the instilagel to bring with us. I got it from boots without prescription but they were very reluctant to give it to me. He said it feels fine at the moment so doesn’t need any…not sure if best to use it preemptively?

Hope you have a lovely Christmas x

User
Posted 24 Dec 2021 at 07:38

Yes I think you’re right OhDear, it must be much more of a challenge to do this on your own. I know my OH is very grateful for all my help….although I do get a few eye rolls when I’m constantly mithering him πŸ˜‚ even worse he can’t escape me as we’re staying in a small flat πŸ˜‚

Rob definitely feels the same, think he will be better when he finally ‘goes’! I just made him a smoothie yesterday and a huge blended soup, I’ve got him reluctantly taking a bit of prune juice and he’s been having the movicon so hopefully sometime soon. He hasn’t been passing much wind which I find a bit strange as I was expecting him to be farting all the time πŸ˜‚ told him he best not be holding it 🀦🏻‍♀️

Had a bit of a stressful day yesterday so still not had time to properly read your thread, I will do today. Take care and I wish you well with your recovery. Hope you manage to enjoy a nice Christmas x

User
Posted 24 Dec 2021 at 10:11

Morning Elaine

 

Responding to a point you asked of Chris, my understanding is that the Instilagel should only be used as and when needed. It immediately numbs the area where it is placed and according to the instructions that come with it it should not be overdosed. I have only used it a couple of times and have used much less than the recommended dose.

If your OH does manage to evacuate his bowels today ( I did and it was wonderful) tell him not to be concerned if the stools are a little bloody. I was told by one of the nurses at my hospital that that would happen and not to be concerned.

 

Have a great day

 

Ivan

User
Posted 24 Dec 2021 at 14:56
Thanks Ivan. He said it’s not uncomfortable at the moment so hopefully it will stay that was and he won’t need the instilagel πŸ‘πŸ½

Evacuation complete πŸ˜‚ I said how times have changed that I now get excited if he burps, farts or poos πŸ€¦πŸ»β€β™€οΈπŸ€£

So far so good with recovery and hopefully it will stay that way. And the same for you too x

User
Posted 25 Dec 2021 at 16:27

Not sure if anyone will be on the forum today, just after more catheter advice please. Rob's night bag was nearly full this morning, since then though he’s not had to empty it and it’s not even half full. He drank about 3 litres of water yesterday and over 1 litre so far today. What little urine there is is still very pink and has been from day 1. I’ve got him to lie down to see if that might restart the flow. Is there anything else he could try? Should I be worried? Or just being paranoid? Thank you

User
Posted 25 Dec 2021 at 16:58

The rate at which urine drains into the bag is not always constant. The amount of urine in my overnight bags varies from 300 to 1500mls. Are there any clots or debris coming into the bag ? Are the pipes kink free and is the bag below the level of the bladder. 

Watch out for constant bypassing which may indicate a blockage in the catheter. If he starts to feel ill get medical attention. Retention can be quite painful and is not ideal after RP surgery. 

If you think the catheter is blocked a District nurse should be able to flush the catheter but the advice should have been given DO NOT let anyone other than a urologist change your catheter. 

Lying down usually helps with my catheter drainage. If the leg bag is on the left leg lay on the left side and visa versa.

Constipation can also cause a slow flow of urine through a catheter.

Thanks Chris

 

User
Posted 25 Dec 2021 at 17:09

Thanks for your reply Chris.

It looks like there is some debris blocking it as some just came through and then the bag filled up. I can see another little clot again which may have started to block it up again 🀦🏻‍♀️

I’ve actually just phoned the hospital and a doctor called me back, we’re going to give it an hour to see how things are going and if nothing coming through again they’ve said to come in and they will flush it or do whatever required.

Thanks so much for responding, especially on Christmas Day 🀦🏻‍♀️

User
Posted 25 Dec 2021 at 17:09

Afternoon Elaine

I was worried on Thursday that my night bag was not filling up, my day and night bags having always been  quite full, so drunk more water, played around with the strap of my day bag to ensure it was not stopping the flow, checked my tubing to make sure it was not blocked and sat up higher in the bed so that my bags were much lower than my bladder. Within an hour or so my night bag was again filling up at the rate it always had. My urine is not the nice clear colour it was pre-surgery and there are always some bloody stains on the tena pad which I have under the tube from my penis.But, it is early days and prostate removal is major surgery so  it will take a little time for things to return to "normal".

 

I assume Rob flushes his night bag through with warm water each day after he has detached it from his day bag?

 

As Chris has mentioned, laying on ones side can help flow.

 

Ivan

User
Posted 25 Dec 2021 at 18:13

Thank you Ivan.

He’s been squeezing the tube slightly and that seems to have released some debris, he’s now emptied the bag 3 times in the hour. There were lots of little clots that’s came through it. Rob's urine seems to have been pretty pink for the start although he said he never saw it while in hospital! He hasn’t had any leakage from his penis so not using any pads at present.

It’s all just so worrying isn’t it….things have been pretty good so far but I know im inclined to panic. Doctor did say though if nothing is coming through it at all he must come in and not wait too long.

It was never mentioned about flushing the night bag with warm water. 

User
Posted 25 Dec 2021 at 18:30

Well, that is good news!

I was told by the nurse before I left the hospital that I should flush through the night bag each day with warm water when I had uncoupled it from the day bag ( though I would have thought that the day bag was more in need of flushing, but this obviously is an absolute no,no- unless undertaken by a professional) so that is the  first thing I do every morning.

 

Interesting that Rob is not bypassing his catheter. I am but only so very slightly. Hence the tena pad.

 

Yes, the daily motions that we all do become so much more important, perhaps overly so, when you have had your prostate removed. But as the doctor mentioned to you, if the bag is not filling up it is crucial that help is sought.This point was emphasised to me by my specialist nurse.

 

 I have periods of feeling really good and then come over all tired and go back to bed for a couple of hours. 

 

By the way, the nurse told me that it was very important to keep drinking loads of water each day 

Edited by member 25 Dec 2021 at 18:31  | Reason: Not specified

User
Posted 25 Dec 2021 at 18:43

Elaine 

As a seasoned catheter wearer I have lots of things I do that I would not necessarily tell post RP surgery patients. I do the squeezing the catheter trick, I start where the catheter comes out of the body and work down to the bag. My catheters are made of clear material so it is easy to see if things are building up. I am guessing you perhaps have a tan coloured catheter. Of course you can't see what is happening inside the urethra. 

Ivan 

I asked about night bags on the facebook  site, out of 15 people 8 were given enough night bags to have a new one each night, 7 had to reuse a night bag for a maximum of 7days.  Some of the 8 had non reusable bags. There seems to be no consistently in NHS protocols.

Thanks Chris

User
Posted 25 Dec 2021 at 18:57

Thanks, Chris, for your comments and, as you say, the lack of consistency between hospitals does not make sense.

 

I certainly don't envy you wearing a catheter long term but needs must and we all have to do whatever it takes to get by.

 

Ivan

User
Posted 25 Dec 2021 at 19:23

Ivan 

Should have mentioned my long term catheter is a suprapubic catheter, i.e. it comes out a few inches below the belly button. I did have a urethral catheter on about 13 occasions and sometimes had a urethral and SPC at the same time. It is surprising how we can adapt to new situations. Hopefully you and Elaine's OH never have to go there.

Thanks Chris

User
Posted 25 Dec 2021 at 20:41

Chris & Ivan,

I really can’t thank you enough for today, it feels a little scary sometimes all of this but for me to be able to come on here and ask for reassurance or advice and get it as quickly as I have today it just helps so much.

Rob has drank about 3 litres of water each day…I literally hand him another glass as soon as one is finished 🀦🏻‍β™€οΈπŸ˜‚

Really pleased to say he has now emptied his 500ml bag 6 times since 5pm, it definitely seemed like some clots were blocking everything. The last bag full was a very light rose colour, the lightest it’s been since he came home….so really happy with that.

I did manage to cook a Christmas dinner through all the drama πŸ˜‚ hope you’ve both managed to have a nice day and I wish you all the very best x

User
Posted 26 Dec 2021 at 10:58

Good that everything is back to "normal" Elaine and that you are multi-tasking. What women are good at!

Hopefully though you were not holding Rob's urine bag when holding the jug to make the gravy. Easy to get them mixed up and pour the wrong contents on the turkey.

 

As well as drinking copious amounts of water I was told to keep moving about and to walk around  as much as I can. I think over the last few days I have walked around my property more in those days than I had in the previous couple of years.

 

Have a good day

 

Ivan

Edited by member 26 Dec 2021 at 13:22  | Reason: Not specified

User
Posted 01 Jan 2022 at 06:21

Not so happy new year 🀦🏻‍♀️, not really slept at all as catheter seemed to be blocking again so been setting my alarm through the night to keep checking Robs bag. It is filling up a bit now and not as pink again so hopefully will be ok. Think we’ve overdone it with walking. The next few days will just be resting.

User
Posted 01 Jan 2022 at 06:42

Other news….histology is in!

Still trying to get my head around all the terminology but from what I can gather and from surgeons response things look pretty good considering where we started.

50% nerves spared. Negative margins. And it was contained within the capsule so no seminal vesicle invasion or EPE etc. but PNI was noted.

1 out of 14 lymph nodes removed had some cancer cells in (which we already knew about) with no extra nodal extension….it was 7mm though so slightly smaller than first thought. Now it says no lymphovascular invasion identified, can anyone help with this? Just with it being N1 I thought there might be invasion.

New grading of T2 N1 (no letter after T2 (a,b,c) is there always? Gleason score upgraded to 4+5=9 not great I guess but someone posted recently about how HT could mislead and increase Gleason score so going to ask about this.

We have a meeting next week to discuss so will get all my questions ready for then.

Still working my way through trying to understand it all but any thoughts would be welcomed.

Thank you

 

 

User
Posted 01 Jan 2022 at 08:49

Originally Posted by: Online Community Member

Not so happy new year 🀦🏻‍♀️, not really slept at all as catheter seemed to be blocking again so been setting my alarm through the night to keep checking Robs bag. It is filling up a bit now and not as pink again so hopefully will be ok. Think we’ve overdone it with walking. The next few days will just be resting.

Elaine

Yesterday I emptied a very full bag on several occasions, drank plenty of fluids as per normal. 

I had one small alcoholic drink at midnight and after eight hours in bed I got up  and my night bag had just below 400 mls in it.

A blocked catheter will usually result in "by passing" of the catheter or possibly a bladder spasm. As the bladder starts to fill the normal action may push out the blockage. If he starts to feel his bladder is full or starts to feel ill then get urgent medical attention. 

Pity we are not allowed pictures on here, you would be surprised what can pass through a catheter.

The clear margins is good news on the histology report.

Thanks Chris

User
Posted 01 Jan 2022 at 08:50

Morning Elaine

 

First of all, I am sorry to hear that you and Rob had a restless night last night.

 

I am responding to your first message rather than your second one (06.42) as people more knowledgeable and qualified than me will be able to answer it in a much more detailed way. I never had any problem with my day bag  filling up, it was always the night bag that didn't start to fill up until I had given the pipework a shake etc. Like you, I was constantly  checking it to see if it was working etc. At one stage I was contemplating not using the night bag and to just set my alarm for every couple of hours so that I could check whether the day bag needed emptying. I found that it helped to have my head and torso at a 45 degree angle to the bed and to ensure that the pipework was not curled up in the bottom of my bucket holding the bag. I also found that exercise when I had my catheter in  gave my urine a more pinkish hue so stopped doing any exercise (obviously I didn't just lay in bed and ring a bell for my helper to attend to my every need and whim) and found that this returned my urine to a more normal colour.

Ivan

User
Posted 01 Jan 2022 at 09:09

I hope things get better for rob soon Elaine  and you go on to have a better time all the best for 2022  thinking off you gaz

User
Posted 01 Jan 2022 at 13:21

Thanks again guys for your replies. He slept in until about 11 and had a 1500ml bag by then 🀦🏻‍♀️ and no pink 🀷🏻‍♀️ so good news. It just felt a bit stressful again last night…you sometimes feel like it won’t start flowing properly again.

I think we definitely did too much walking the past couple of days and that is what has caused a little bit of blood blocking it. We are now resting as much as possible until catheter removal on Tuesday and consultant appointment on Wednesday.

Probably spent too much time reading through histology report trying to make some sense of it too so sleep was bound to be limited for me. 

Chris, Ivan & Gaz….wishing you all the very best for 2022. Fingers crossed a good year for all of us x

User
Posted 01 Jan 2022 at 13:37

At this stage, he should be doing not much more than a meander to the end of the street and back, or round the garden if you have one. The risk of hernia is significant for men who have had keyhole / Da Vinci RP, and it is often the case on this forum that these were the same men who overdid it in the early days.

Edited by member 01 Jan 2022 at 13:49  | Reason: Not specified

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

User
Posted 01 Jan 2022 at 15:44

Thanks Lyn. At the hospital they told him to walk as much as possible but don’t overdo it, also how it was a good time of year to explore London while it was quiet. It was just one day really that we walked a little too far, we did just meander with the dog but lesson learnt and certainly don’t want to risk a future hernia. 

Did you see my other post about the histology Lyn? Just wondered if you had any views on it? Your knowledge about any of this would be greatly appreciated. Thank you x

User
Posted 01 Jan 2022 at 16:27
Ha! Fair enough ... I imagined you had marched him up the Brecon Beacons or something!

No particular view about the histology - some of it is guesswork until you can clarify with the surgeon. Obviously, it is good news that they have amended from T3 to T2 and it makes no difference whether it was T2 a, b or c once the treatment decision has been made ... his prostate is now in a petrie dish so T2 is T2.

The upgrading to G9 is not great but again, hopefully it is all in a lab so makes little difference now.

The stick in the ointment is the positive lymph node / N1 which you are already aware increases the risk of recurrence and the need for adjuvant or salvage treatment (depending on his first post-op pSA and then PSA readings over the coming years). The comment about there being no lymphovascular invasion makes no sense to me in the light of the N1 but the surgeon can clarify that for you.

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

User
Posted 01 Jan 2022 at 20:40

He would probably try Lyn if I let him 🀦🏻‍β™€οΈπŸ˜‚

Thanks for your response on the histology. Atleast we’ll get to ask some questions soon. It was the No lymphovascular invasion that got me puzzled. I guess again I’m clutching at straws that when they took the lymph node then that’s it all gone! I think I’ve mentioned this before somewhere but my gran had breast cancer at 80, had mastectomy and they removed 3 lymph nodes (turned out 2 had cancer) she never had any other treatment and is now 95 and still doing fine. We will live in hope I guess. I’ll update next week when we’ve seen the consultant. 
Happy new year, and all the very best x

User
Posted 02 Jan 2022 at 20:58

Hopefully things are settling down and you are both ok gaz

User
Posted 02 Jan 2022 at 21:05

Thanks Gaz, yes things are better…catheter flowing well and not pink πŸ™πŸΌ Only one more full day with the catheter all being well with TWOC and then post op consultation Wednesday. Busy week for us since we’ve been doing nothing for 2 weeks πŸ˜‚

Hope all good with you πŸ‘πŸ½

User
Posted 02 Jan 2022 at 21:45

That's good hopefully it continues  I am ok next PSA test in March see how we go but feeling fine at moment 9 months after radiotherapy still on hormone therapy until December 2022 but so far so good πŸ‘

User
Posted 02 Jan 2022 at 21:51

That sounds really good Gaz.

I’m hoping Rob won’t have his next HT injection, we will get a better indication then of how the surgery has gone and whether he’ll need RT

User
Posted 02 Jan 2022 at 21:58

Yes let's hope he doesn't need the radiotherapy but I found it tolerable with very little side effects  not had many problems with hormone therapy either really just hope everything continues like that πŸ€”

User
Posted 02 Jan 2022 at 23:22

Glad things are improving and good luck with the TWOC

User
Posted 02 Jan 2022 at 23:37

Elaine hope the TWOC goes well, due to ongoing issues and being catheterised on a dozen separate occasions I have had a dozen twocs and never failed. 

I always made sure I was well hydrated before getting to the hospital. Don't hold back on drinking water in the belief you will will leak less , far better to leak than have another catheter put in because he can't urinate. Listen to your nurses at the Twoc I was told to drink my water in a controlled manner and not drink the lot in one go.

Make sure he is relaxed and then relax a bit more, the removal is frequently described as wierd, I have never had a painful urethral catheter removal. Those first few urinations might be uncomfortable but for me it soon went back to normal. I did often pass a very small amount of blood at the start or finish of the stream, I also passed bits of scabs and debris for a few weeks after the twoc / op.

Following removal I had to pass two samples of 100mls before being scanned to ensure the bladder was draining properly.

A change of clothes in a bag, some pads, a cover for the car seat and a urine bottle is a good idea just in case. Leaking when standing up is often reported , hopefully he will soon learn to tense the pelvic floor muscles as he stands.

I hope his future recovery goes well.

Thanks Chris

User
Posted 03 Jan 2022 at 19:26

Thanks Jeremy.

And thanks so much Chris for your post and all the advice, this is so useful to us and really appreciated. Will let you know how we get on tomorrow x

User
Posted 05 Jan 2022 at 14:25

Just an update…TWOC didn’t happen 😒 they scanned Robs bladder when he arrived and there is a very tiny leak so the decision was made to leave the catheter in. After speaking with the consultant since, this is precautionary as it all would possibly be ok but not worth the risk. We’re happy with that and would rather wait and be safer. He’s not been having too many problems with catheter and still haven’t had to use the instilagel yet so hopefully that will continue. We head home on Friday and then coming back to London to try again for TWOC on the 19th. So a slight setback, and I guess this is when logistical challenges face us….it’s just a 2 hour train ride though so not too bad.

User
Posted 05 Jan 2022 at 14:29
Sorry to hear that Elaine but definitely the right decision. I’m sure it will have healed by next time.
User
Posted 05 Jan 2022 at 14:38

Thanks Jeremy. Yes we would rather it have come out but not too down about it. Most important thing is that it will be ok πŸ‘πŸ½ 

User
Posted 05 Jan 2022 at 15:20

Better safe than sorry but I bet Rob was all geared up to being catheter free. Interesting that the hospital scanned Rob's bladder before removing the catheter, Addenbrookes certainly didn't scan mine before removal. The difference between NHS and private I guess.

 

Did the consultant comment on Rob's histology?

 

Ivan

User
Posted 05 Jan 2022 at 16:06

Hi Ivan,

Yes definitely would have been nice to be catheter free but he’s still fairly upbeat at the moment, just hopefully no problems with it when we go home.

We thought the scan was standard procedure but if most others don’t have it then maybe not. I think the main reason for it must have been the bladder neck reconstruction, it’s seems that it was a bit more complicated. Seems it just needs a little more time to make sure it is healed properly.

 

User
Posted 05 Jan 2022 at 16:22

With regards to histology Ivan, it seems things are as good as could be expected so we have to be happy with that.

It is encouraging that it was graded T2 instead of T3 as originally thought. His Gleason score has increased though from 3+4=7 to 4+5=9 not great if it turns out that there are remaining mets but will just have to deal with that if/when it happens. 

All the scans suggest that all the cancer has gone (which is a very long way from where we were 6 months ago when in Manchester they diagnosed him incurable) of course we’re not so naive to believe it’s always going to be that way but at this stage it’s the best we could hope for.

Rob will have PSA test in February but that isn’t going to mean too much either as he is still on HT. He will have had 6 months of prostap by that point but we are now cancelling his next injection which was due in Feb. So probably May/August tests will give us a better indication.

I’m sure we’re going to still get our bad days where we over think and worry but we’ve had a chat and decided to take things for what they are and what we know at his point. Let’s get on with life and deal with each PSA as they arrive. Although we know there is more chance of recurrence because of the lymph node involvement we’re not in too much of a different position to everyone else who has had this operation….I know most worry when 3 months comes around. 

As suspected with the ‘No lymphovascular invasion’ this can’t really be the case because of the lymph node involvement but it wasn’t detected on histology so we’ll take that as another positive.

How much HT has affected histology we don’t really know and maybe never will.

So all in all it’s good news….bet you’re sorry you asked πŸ˜‚πŸ˜‚

How are things with you? Is your continence still going well? Hope so x

User
Posted 05 Jan 2022 at 16:40

A good detailed report is always good, Elaine. And, as you have said, there are a number of positives to take away from your meeting with the consultant. And, as  already mentioned by Lyn, if all the cancer has been removed it doesn't matter what the Gleason score is.

I think Rob will find travelling 2 hours on a train with a catheter in will be a lot easier than travelling  that way when one has just been removed. As you know, I had absolutely no bladder control when my catheter was removed and my understanding is that is the same for everybody. I certainly recommend that when Rob does have his catheter removed that you pack  at least 4 pairs of incontinence pants. At first, wearing just  pads will be no use whatsoever.

 

Re my own situation, I am dry when sitting and laying down (I am obviously putting pressure on the bladder area) but leak when I get up and move around. At the moment I would say I am 70% continent. I have restarted my pelvic floor exercises so hopefully things will soon begin to improve. According to my specialist nurse, bladder control when undertaking pelvic floor exercises usually starts to improve 2 weeks or so after the catheter has been removed.

 

At the moment, although I think I could get away with wearing just my incontinence pants on a beach in Clacton I am not sure it would cut the mustard on a beach in Rio.

 

Have a good journey home

 

Ivan

 

Edited by member 05 Jan 2022 at 19:20  | Reason: Not specified

User
Posted 05 Jan 2022 at 18:06

Elaine , sorry to hear the catheter removal didn't happen, at least you have an idea of some of the process.  As OhDear says the train journey after the TWOC may be a challenge. I have done the eight hour round trip for a ten minute appointment, not the best way to spend your day.

Hope it goes better next time, I am sure you don't need telling to keep him under control and not let him  go running any marathons πŸ˜€.

Keep us updated.

Thanks Chris

 

User
Posted 05 Jan 2022 at 19:00
Like everything else with this darned disease, there is a postcode lottery. It is very common for an ultrasound scan to be undertaken at TWOC appointment but not universal.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jan 2022 at 14:57

Hi Ivan,

We’re going to stay here overnight when the catheter is removed. We didn’t fancy getting straight back on the train. I’m worried he’s going to be reluctant to drink too much to try to prevent accidents, but he will still need lots of fluid I assume to try and avoid inflection.

Sounds like things are going well for you. Hopefully it will continue to improve over the next few weeks. Rob did lots of pelvic floor exercises before the op but mainly sat down, we were only told a few days before the op that it’s really useful to do them while walking around aswell, so he may struggle when on the move too.

Keep us posted on your improvements and best of luck.

Elaine

User
Posted 06 Jan 2022 at 15:03

Thanks Chris. Yes happy to wait to be honest….rather be safe than sorry and make sure everything has healed ok. Going to stay overnight after TWOC, it’s not ideal having to come back and travel home but hopefully I’ll prepare well and we’ll be ok. 

Heading home tomorrow so he wants to do a last walk along the Thames today….he really does think he can do more than he should so just having to reign him in πŸ˜‚

User
Posted 06 Jan 2022 at 15:05

At the moment, although I think I could get away with wearing just my incontinence pants on a beach in Clacton I am not sure it would cut the mustard on a beach in Rio.

This really made me laugh Ivan 🀣🀣 I was just imaging Rob on any beach with his Tena pants on 🀦🏻‍β™€οΈπŸ€£πŸ€£

User
Posted 06 Jan 2022 at 16:38

 

Afternoon Elaine

Yes,  it is tempting to drink less to stop the leaking but I was told by the nurse that this is exactly the wrong thing to do. So, I am drinking the same 3 litres of water a day that I did when I had the catheter in. I understand that performing the pelvic floor exercise standing up is best as that  better strengthens the muscles. I was told to breathe in and then when breathing out to perform the technique. I was also told to vary how I positioned my feet and that I should sometimes undertake the exercise with my feet pointing away from my torso, sometimes with my feet pointing straight ahead and sometimes with my feet facing inwards. Apparently, this procedure strengthens  different parts of the pelvic floor. It was also suggested that I could perform those exercises when, for example, I was waiting for a lift, but I decided  not to do so as I was worried that if I did  I would be arrested for public indecency.

I think staying overnight in London when Rob has his catheter removed is a good idea as it will take him a while to get use to the idea that his urine is no longer collected in a nice little bag. It is a strange sensation not having full bladder control, but it does get better and is another step on the road to recovery

 

Ivan

 

User
Posted 06 Jan 2022 at 21:36

Elaine.

I do agree with with OhDear about Keeping the water intake up. I was told less water can make the urine more concentrated and irritate the bladder.

I joined a zoom meeting last night  organized by Andy62. Victoria the physiotherapist, made a point that lying down to do PFEs was not the best position, all to do with gravity.

My work involved stopping in hotels a couple of nights a week. I was paranoid about wetting the bed. I put a pad in my snug pants, wore a pair of tena pants over the top had one of the hospital type water proof squares on the bed and also slept on a towel. As it turned out I never leaked.

I assume you can still book trains seats to be near a toilet. Don't forget some nappy sacks for the wet pads.

Hope the next trip is successful.

Thanks Chris

 

User
Posted 07 Jan 2022 at 17:02

How long should one go on taking 3 liters water a day ?

Edited by member 07 Jan 2022 at 17:04  | Reason: Not specified

 
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