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My LRP journey

User
Posted 19 Aug 2014 at 14:01
Hi all.

Had my LRP on Friday 15th August. I'm back at home now. It's 4 days post op, living with the Catheter and feeling a little better each day. For anyone facing this treatment or wondering how it feels, here's my account from the pre op! I chose to go via the private route for the op itself as I have BUPA through work. This has dovetailed into the NHS System really well. Really sorry but it does go on a bit!

The Pre Op.

I had this about 3 weeks before the operation day. I was really worried that this would stop me having the surgery as I've put a stone on since diagnosis (comfort eating & drinking) and I've had blood pressure that's towards the high end of normal for a long time. I measure everyday and it's tended to be 165/85 ish for years. My GP has advised me to take no action as once I start bp meds, I'm on them for life. It's always on my mind though. I was diagnosed T2 diabetic 4 years ago at the age of 39. With a weight of 21stone and stressful office job, it came as no surprise but it did give me a kick to sort my life out. I set about healthy eating & exercise and over the course of 12 months, lost 8 stone and got myself to a better 13st which gave me a BMI of a 26. My BMI at the pre op was 27 & was ok. The nurse greeted us & we spent about 10minutes filling in personal details & going through a questionnaire about lifestyle & previous conditions. I had to take any meds I was taking along too, in the packets. She checked all of them and told me which ones I should take pre op according to NICE guidelines. All good. My body temp was taken, swabs were taken from the inside of my mouth, under my arms & groin. A few blood samples were taken too. She said these would be checked for varying things and the swabs for MRSA. She told me that any problems & they would contact me before the op day to advise. She gave me an information sheet which she talked through. Advising times to eat, drink etc and told me what time & where to turn up for the op. A sigh of relief, my wife & I set off for lunch with relatives & onto a 2 week holiday where we tried to think about and do nice things & forget about the PCa for a while:-)

A chat with my GP.

Since the initial PSA referral, I'd had no contact with my GP for 8 months so thought it would be a good idea to catch up with him before my op & talk things through as I would need NHS support after discharge from the private hospital following the op. He was delighted to see me & I was delighted to see that he had been copied with all the correspondence & was fully aware of my case. We talked through the test, diagnosis & what was to be expected after the op, including prescriptions, incontinence support, sick notes & ED issues. He shook my hand, asked me to get in touch after discharge & wished me well.

A chat with my PCa clinical nurse 'key worker'

On diagnosis, the urologist introduced my key worker and I was lucky to meet him at a local PCa support group the following week. He had arranged an appointment with the incontinence clinic (I've got a stash of pads ready for when the catheter comes out & order forms for when I need more) The day before the op, my key worker had arranged for me to come into the hospital for a chat. He again talked me through the procedure, made sure I was fully aware of times to stop eating & drinking & told me that it was not to late to back out if I'd got doubts! I hadn't even thought of that before. It made me stop, think & re confirm that was absolutely 100% the treatment route for me. He also wrote a note to my GP asking him to refer me to ED clinic.

The day of the Op

The op was 08.30. I was told to arrive at 07.30, I was there at 07.00. The power was off. Terror! The receptionist told me it was ok, they were testing the generator. It would be back on in a minute. She was right, the lights came back, the TV came on. Anyway, she said. You're early! I was. All good. Panic over. I was escorted to my room, unpacked my bag & 10mins later at 7.40, a nurse entered the room. She introduced herself as the nurse who would be looking after me. We sat and filled in paperwork, name, address, etc, etc,, blood pressure,, blood sugar, body temp. All good.

The surgeon came at around 8am, we had a good chat, all good. Then came the aneasthiest. He talked me through the process & asked me if I'd got any caps or fillings. This was the bit of the op I was most worried about. He reassured me. The nurse gave me a sponge in a sealed bag & asked me to shower and change into the gown. Eek it was all feeling very real!

I was wheeled down at 8.30. I felt like the bed was zooming at about 30mph as I watched the lights above fly past! The first time I'd seen the business end of the op too! Greeted by the Aneasthisist, we had a chuckle as he said relax, it feels like a lovely G&T, imagine you're sat at the beach! I answered that I thought the only place I could get a G&T at this time of the day was weather spoons!

The next thing, I'm coming round. I'm desperate for a poo & shouting this in a bit of a panic to the nurses around me. No problems, we will get you a bed pan. Nothing but still that pain. I need to sit on the loo I tell them and try & get up. I'm told no in no uncertain terms & the bedpan reinserted. After a minute or two, the feeling subsides a little & I'm wheeled off to my room where my wife & daughter await.

All good, feeling a little groggy, given water & asked if I would like to eat. I declined but that thirst! I couldn't get enough water & drank & drank. I felt bloated but downed water in buckets. This went on for 2days.

The catheter was handling things well, water was week black current coloured but flowing into my catheter bag by the side of my bed. The odd chunk of something red passed too. I ate a chicken sand which at tea time and even a cup of tea. At about 8pm, I felt hot, sweaty & just unwell. When I checked the catheter bag, I noted it hadn't moved for a while. I pressed the nurse call & she came then summonsed the doctor. After 10minutes of flushing with a syringe, deflating the balloon and jigging the tube about, things started to move again. Relief & instantly felt better.

Sleep was wonderful and I passed 5 litres of water in 8 hours. Still I was thirsty. I was encouraged to shower after breakfast (I had porridge). I also thought I'd try for that number 2's. Success of sorts but a lot of pain in the bladder area followed by blood coloured urine & leaks from my penis. Assured this was to be expected, I showered, changed into clean clothes and sat beside the bed in the chair. The consultant visited about 10am and was delighted with my progress.

The unquenchable thirst subsided a little and I was discharged on the 17th August with day bags, night bags, medication & a letter for my GP.

Glad to be home & 2 days on. I'm getting to grips with the bag situation. I've had a huge delivery of spares and kit from a company called 'charter' and order details if I need anything else. The GP has called, he's prescribed everything the hospital has instructed & arranged for the district nurse to call me later to discuss my needs. Number 2's are still a challenge. I now know what's coming though, so just grit my teeth & get on with it.

My ab area is quite painful. Getting up & bending down are quite a kerfuffle. I tried a walk yesterday, just under a mile. Too far. Knocked me for 6. Plan half a mile later today to see how this goes. Have accepted recovery will take time but 100% sure I've done the right thing.

The appointment to remove the catheter is in 10days time. I'll update as to how that goes.

Life's a Marathon. Run in peace.

User
Posted 19 Aug 2014 at 14:01
Hi all.

Had my LRP on Friday 15th August. I'm back at home now. It's 4 days post op, living with the Catheter and feeling a little better each day. For anyone facing this treatment or wondering how it feels, here's my account from the pre op! I chose to go via the private route for the op itself as I have BUPA through work. This has dovetailed into the NHS System really well. Really sorry but it does go on a bit!

The Pre Op.

I had this about 3 weeks before the operation day. I was really worried that this would stop me having the surgery as I've put a stone on since diagnosis (comfort eating & drinking) and I've had blood pressure that's towards the high end of normal for a long time. I measure everyday and it's tended to be 165/85 ish for years. My GP has advised me to take no action as once I start bp meds, I'm on them for life. It's always on my mind though. I was diagnosed T2 diabetic 4 years ago at the age of 39. With a weight of 21stone and stressful office job, it came as no surprise but it did give me a kick to sort my life out. I set about healthy eating & exercise and over the course of 12 months, lost 8 stone and got myself to a better 13st which gave me a BMI of a 26. My BMI at the pre op was 27 & was ok. The nurse greeted us & we spent about 10minutes filling in personal details & going through a questionnaire about lifestyle & previous conditions. I had to take any meds I was taking along too, in the packets. She checked all of them and told me which ones I should take pre op according to NICE guidelines. All good. My body temp was taken, swabs were taken from the inside of my mouth, under my arms & groin. A few blood samples were taken too. She said these would be checked for varying things and the swabs for MRSA. She told me that any problems & they would contact me before the op day to advise. She gave me an information sheet which she talked through. Advising times to eat, drink etc and told me what time & where to turn up for the op. A sigh of relief, my wife & I set off for lunch with relatives & onto a 2 week holiday where we tried to think about and do nice things & forget about the PCa for a while:-)

A chat with my GP.

Since the initial PSA referral, I'd had no contact with my GP for 8 months so thought it would be a good idea to catch up with him before my op & talk things through as I would need NHS support after discharge from the private hospital following the op. He was delighted to see me & I was delighted to see that he had been copied with all the correspondence & was fully aware of my case. We talked through the test, diagnosis & what was to be expected after the op, including prescriptions, incontinence support, sick notes & ED issues. He shook my hand, asked me to get in touch after discharge & wished me well.

A chat with my PCa clinical nurse 'key worker'

On diagnosis, the urologist introduced my key worker and I was lucky to meet him at a local PCa support group the following week. He had arranged an appointment with the incontinence clinic (I've got a stash of pads ready for when the catheter comes out & order forms for when I need more) The day before the op, my key worker had arranged for me to come into the hospital for a chat. He again talked me through the procedure, made sure I was fully aware of times to stop eating & drinking & told me that it was not to late to back out if I'd got doubts! I hadn't even thought of that before. It made me stop, think & re confirm that was absolutely 100% the treatment route for me. He also wrote a note to my GP asking him to refer me to ED clinic.

The day of the Op

The op was 08.30. I was told to arrive at 07.30, I was there at 07.00. The power was off. Terror! The receptionist told me it was ok, they were testing the generator. It would be back on in a minute. She was right, the lights came back, the TV came on. Anyway, she said. You're early! I was. All good. Panic over. I was escorted to my room, unpacked my bag & 10mins later at 7.40, a nurse entered the room. She introduced herself as the nurse who would be looking after me. We sat and filled in paperwork, name, address, etc, etc,, blood pressure,, blood sugar, body temp. All good.

The surgeon came at around 8am, we had a good chat, all good. Then came the aneasthiest. He talked me through the process & asked me if I'd got any caps or fillings. This was the bit of the op I was most worried about. He reassured me. The nurse gave me a sponge in a sealed bag & asked me to shower and change into the gown. Eek it was all feeling very real!

I was wheeled down at 8.30. I felt like the bed was zooming at about 30mph as I watched the lights above fly past! The first time I'd seen the business end of the op too! Greeted by the Aneasthisist, we had a chuckle as he said relax, it feels like a lovely G&T, imagine you're sat at the beach! I answered that I thought the only place I could get a G&T at this time of the day was weather spoons!

The next thing, I'm coming round. I'm desperate for a poo & shouting this in a bit of a panic to the nurses around me. No problems, we will get you a bed pan. Nothing but still that pain. I need to sit on the loo I tell them and try & get up. I'm told no in no uncertain terms & the bedpan reinserted. After a minute or two, the feeling subsides a little & I'm wheeled off to my room where my wife & daughter await.

All good, feeling a little groggy, given water & asked if I would like to eat. I declined but that thirst! I couldn't get enough water & drank & drank. I felt bloated but downed water in buckets. This went on for 2days.

The catheter was handling things well, water was week black current coloured but flowing into my catheter bag by the side of my bed. The odd chunk of something red passed too. I ate a chicken sand which at tea time and even a cup of tea. At about 8pm, I felt hot, sweaty & just unwell. When I checked the catheter bag, I noted it hadn't moved for a while. I pressed the nurse call & she came then summonsed the doctor. After 10minutes of flushing with a syringe, deflating the balloon and jigging the tube about, things started to move again. Relief & instantly felt better.

Sleep was wonderful and I passed 5 litres of water in 8 hours. Still I was thirsty. I was encouraged to shower after breakfast (I had porridge). I also thought I'd try for that number 2's. Success of sorts but a lot of pain in the bladder area followed by blood coloured urine & leaks from my penis. Assured this was to be expected, I showered, changed into clean clothes and sat beside the bed in the chair. The consultant visited about 10am and was delighted with my progress.

The unquenchable thirst subsided a little and I was discharged on the 17th August with day bags, night bags, medication & a letter for my GP.

Glad to be home & 2 days on. I'm getting to grips with the bag situation. I've had a huge delivery of spares and kit from a company called 'charter' and order details if I need anything else. The GP has called, he's prescribed everything the hospital has instructed & arranged for the district nurse to call me later to discuss my needs. Number 2's are still a challenge. I now know what's coming though, so just grit my teeth & get on with it.

My ab area is quite painful. Getting up & bending down are quite a kerfuffle. I tried a walk yesterday, just under a mile. Too far. Knocked me for 6. Plan half a mile later today to see how this goes. Have accepted recovery will take time but 100% sure I've done the right thing.

The appointment to remove the catheter is in 10days time. I'll update as to how that goes.

Life's a Marathon. Run in peace.

User
Posted 19 Aug 2014 at 14:38

Hi Carlos,

Pleased to read that all went well with your  op....

Weird how different areas respond to after care etc...

I've had no help with pads on the NHS...never had a visit from a nurse and my GP was not even aware that I was at home ! 

But I'm not complaining as I had a very good outcome following surgery, so I'm very grateful for that.

If I can offer you any advice at this stage of your recovery it is....not to overdo things  and try to listen to your body...

Whilst my catheter was in situ I just made do with a gentle stroll for a few hundred yards at a time every day..

After removal of the catheter I then gradually built up my walks over a period of time....

At almost 10 weeks post op I'm now able to walk miles across  country with the dogs again and feel pretty good physically... now and again I may get the odd 'twinge' .....I do take notice of this and wind things back a little  as I feel it's my body telling me to ease off...

Best Wishes for a speedy recovery

Luther

User
Posted 19 Aug 2014 at 15:45
So pleased to read that the procedure went well and you are coping well with the first stages of recovery.

Take things easy, enjoy the break from work and don't push yourself too hard in your attempt to regain your previous fitness levels. It will come with time.

Roger
User
Posted 24 Aug 2014 at 14:08
Hi Carlos

Before having my catheter out I was emptying about 1.5 litres from the night bag every morning.

When I had the catheter out I mentioned to the nurse that I was concerned about what would happen overnight from now on, given how much urine I had been passing. She told me to keep the fluids up during the day and ease off after about 6pm.

I found this worked. I did wake up a couple of times during each night for a few days - although this was because I was sleeping on my back, as it was painful sleeping on my side or front, which I am not used to - and went to the loo as a precaution but I never had any problems.

As soon as the catheter was removed I was continent. I did wear a pad during the day for a couple of days and a night for a week but this proved unnecessary. 9 weeks after the op I am still continent, although I do have occasional small leaks - which always seem worse than they actually are - on odd days but I have never had any problems at night.

Take it easy and good luck

User
Posted 24 Aug 2014 at 16:18
Carlos

The hospital told me to drink two to three litres a day, the incontinence nurse suggested two litres was plenty and cut out the caffeine.

I sometimes carry a pad in my trouser pocket, it plays havoc with the washing machine if they are left in the pocket.

Thanks Chris

User
Posted 19 Sep 2014 at 17:55

hi glad that things are going well
re cilias paul is only just starting to get an effect from taking them and he is 4 months post op
so give it time
marie

User
Posted 19 Sep 2014 at 23:16

I started Cilias 2 months ago but had to come off them due to side effects, mainly refux aka, heartburn,

every time I ate something I  suffered cronic heartburn / indigestion / reflux, it took a while for it to establish it self, and for me to figure out what was happening,   now I pay attention and make a mental note of the side effects on medications !

 

 

 

Edited by member 19 Sep 2014 at 23:23  | Reason: Not specified

User
Posted 27 Sep 2014 at 19:29

 

when I had my catherter removed I was told to drink plenty and come back in an hour or so as they wanted to make sure I could pass water, I hated having the damn thing in and I was pleased as punch that it had been taken out

.....unfortunately I couildnt pee,  felt like I was going to blow up, I was getting in a desperate state, cold sweats , about the pass out, looked and felt like death I was in the urology department waiting room on my own, I laid accross some chairs trying to get some comfort, fortunatly someone walked in took one look at me and asked are your all right....no please get some help, a nurse came and nearly carried me into a room, it was panic stations, I was the last patient on a friday afternoon, the palce was deserted

I was ready to beg them... put it back in....they did relief was slow in coming, a doctor was summoned, an eye specialist ! , somewhat bemuse and confused as what to do, eventully an ambulance was called and I was packed of to A&E, I thought wait until I tell the Mrs, I convinced her not to come along this afternoon, anyway I was checked over and discharged within an hour and told to go back to the hospital in a weeks time to have it removed again, I did and it was sucessful , never did find out what the problem I was ,

but I do having a lasting memory of not being able to pee and about to pass out in desperation, Carols you have my sympathy,

I wish you well and hope the issue is resolved quickly....good luck

User
Posted 27 Sep 2014 at 20:27
Carlos

Have a look at the link below not likely it is quite rare but it has happened to me and I am seeing my consultant next week, suffering from reduced flow again.

http://www.cancercompass.com/message-board/message/all,74403,0.htm

Thanks Chris

User
Posted 28 Sep 2014 at 01:32

It seems from posts on this forum that this is more likely after LRP and rare after open surgery yet people still advise newly diagnosed men that keyhole or robotic is the gold standard.

Carlos, I hope the problem settles down once this catheter is removed but yes, it might be sensible to carry a small catheter around with you until you are sure.

Edited by member 28 Sep 2014 at 11:41  | Reason: Not specified

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

User
Posted 28 Sep 2014 at 19:32

Carlos
It sounds like bladder neck stenosis ie narrowing of the bladder neck that can occur following RP. I have this problem in that I have a reduced flow.

They were going to rectify it under a GA last year. However following a chat with the surgeon literally on the operating table we decided to leave it. The reason being although my flow is weaker (I can't pxss over a fence as the aneathatist said) it isn't effecting my quality of life ie not up through night, no urgency etc...but he warned if I had the op to put it right I could end up incontinent . Hopefully it won't get any worse
Hope yours is resolved soon

Bri

Show Most Thanked Posts
User
Posted 19 Aug 2014 at 14:38

Hi Carlos,

Pleased to read that all went well with your  op....

Weird how different areas respond to after care etc...

I've had no help with pads on the NHS...never had a visit from a nurse and my GP was not even aware that I was at home ! 

But I'm not complaining as I had a very good outcome following surgery, so I'm very grateful for that.

If I can offer you any advice at this stage of your recovery it is....not to overdo things  and try to listen to your body...

Whilst my catheter was in situ I just made do with a gentle stroll for a few hundred yards at a time every day..

After removal of the catheter I then gradually built up my walks over a period of time....

At almost 10 weeks post op I'm now able to walk miles across  country with the dogs again and feel pretty good physically... now and again I may get the odd 'twinge' .....I do take notice of this and wind things back a little  as I feel it's my body telling me to ease off...

Best Wishes for a speedy recovery

Luther

User
Posted 19 Aug 2014 at 15:45
So pleased to read that the procedure went well and you are coping well with the first stages of recovery.

Take things easy, enjoy the break from work and don't push yourself too hard in your attempt to regain your previous fitness levels. It will come with time.

Roger
User
Posted 19 Aug 2014 at 19:31
Thanks Guys.

I'm taking it steady. Forgot to say, my belly is huge. No chance of getting the waist anywhere near and just wearing elastic waist stuff.

I'm waddling round like I'm pregnant.

Hopefully this will subside. I've got a few lovely work suits I hope I can get back into in a couple of months 😁

Life's a Marathon. Run in peace.

User
Posted 19 Aug 2014 at 21:47
Carlos

Welcome back, a very comprehensive and accurate description on your journey. Just remember no straining when passing motions. Think the advice is no PFE while the catheter is in. Echo the advice take it a bit easier, this bit is not a race, save that for later. I perhaps took it too easy but was still back at work within four weeks on the road visiting sites within six weeks. Take care of yourself.

Thanks Chris

User
Posted 23 Aug 2014 at 21:42
One week on.

6 days before catheter removal. I've learned the value of rest. After initial denial & the first few days up and covering a mile or so each day strolling, I've found the only way is to sit & relax & heal with a bit of walking limited to the garden etc.

It's not my body, or energy, I seem to have lots. It's just the wounds & the abs which I need to give a fighting chance at recovery, I've come to the conclusion that if it were a broken leg, I'd have no choice but to sit & heal so I'm going with it.

The catheter is ok. I'm passing lots of fluid, even during the night. I'm setting my alarm at 4am to change bags. By this time, I've usually filled to the 2.5litre capacity almost. I'm obviously over drinking but guess this is good to keep flushing. The urine is nice n clear now mostly.

I have a fair bit of leakage when having a number 2's and learned the advantage of the tiled floor in the en suite. I'm using puppy training pads around the wc which is helping to keep the place dry & clean too.

All positive so far & moving nicely to catheter removal and a review with the consultant next Friday.

All good.

Carlos

Life's a Marathon. Run in peace.

User
Posted 24 Aug 2014 at 10:44
Carlos

How much are you drinking ?

Would be interested to hear from others, the most I ever did over night was 1400.

Glad to hear you are on the mend, having the catheter out will be a big relief.

Thanks Chris

User
Posted 24 Aug 2014 at 11:06

Originally Posted by: Online Community Member




Would be interested to hear from others, the most I ever did over night was 1400.




Thanks Chris



Hi Carlos and Chris,

I had a 2 litre night bag  that was connected to the 1/2 litre leg bag........ I never filled the 2 litre bag overnight... 

I always stayed hydrated, and my average nightly output was around the 1500 ml mark

Carlos.... maybe it would help if you reduce your fluid intake a few hours before bedtime? .... That was the advice given to me by the professionals... although as you are well aware it's important to keep yourself hydrated and your bladder well flushed.... 

Best Wishes

Luther

User
Posted 24 Aug 2014 at 11:25
Thanks guys.

I did last night. Nothing to drink after 8pm and filled to around 1500ml.

Guessing I'll need to change things a little too when I start with the pads on Friday.

Cheers

Life's a Marathon. Run in peace.

User
Posted 24 Aug 2014 at 14:08
Hi Carlos

Before having my catheter out I was emptying about 1.5 litres from the night bag every morning.

When I had the catheter out I mentioned to the nurse that I was concerned about what would happen overnight from now on, given how much urine I had been passing. She told me to keep the fluids up during the day and ease off after about 6pm.

I found this worked. I did wake up a couple of times during each night for a few days - although this was because I was sleeping on my back, as it was painful sleeping on my side or front, which I am not used to - and went to the loo as a precaution but I never had any problems.

As soon as the catheter was removed I was continent. I did wear a pad during the day for a couple of days and a night for a week but this proved unnecessary. 9 weeks after the op I am still continent, although I do have occasional small leaks - which always seem worse than they actually are - on odd days but I have never had any problems at night.

Take it easy and good luck

User
Posted 24 Aug 2014 at 16:18
Carlos

The hospital told me to drink two to three litres a day, the incontinence nurse suggested two litres was plenty and cut out the caffeine.

I sometimes carry a pad in my trouser pocket, it plays havoc with the washing machine if they are left in the pocket.

Thanks Chris

User
Posted 25 Aug 2014 at 10:34
Thanks guys.

2400ml last night. I must be a walking water butt! I haven't measured water in, although my OH just keeps the water bottle by my side topped op.

No worries just yet, I'm enjoying the flushing. The urine is mostly nice & clear but I do get the odd surge of yucky stuff from time to time. I'll curb it tonight from 6.

I've got a stash of pads ready & embraced the modern ''man bag' to conceal them. Excited about the catheter removal but still have a fair amount of ab pain on my left where the prostate was withdrawn. Sneezing & coughing seem the worse.

Other than this, pleased with progress so far.

Thanks again!

Life's a Marathon. Run in peace.

User
Posted 29 Aug 2014 at 15:40
Catheter removed today :-) or TWOC as it's known (trial without Catheter)

The removal was done in seconds by a nurse with minimal of fuss & only a few seconds discomfort.

I expected there to be floods of urine but was surprised at only a few drops & spots of blood.

I was handed a pad to put beneath my underwear, a huge jug of water & several little urinal bottle things to pee in.

'Drink lots & let me know when you've done' said the nurse & left me too it. After about 1/2hr, my first pee. Mostly blood. Stung like Hell. Buzzed the nurse, she took it away. 70ml.

'And again' she says. I have another jug of water. And a coffee.pee number 2. Less blood, slightly less sting & nearly missed the bottle. The pressure and flow was fantastic. 100ml.

'And again' repeat of above 160ml, 170ml then 160ml again. Seemed I had plateaud at that.

Each pee less sting, more urine looking & blissful relief. On the last one, she fetched the ultra sound machine & confirmed my bladder was suitably vacated. A residual of 50mg apparently.

I dressed, donned a pad beneath my jeans & headed to the car with my wife driving for the 40mins drive home.

Half way through the journey, had to go. We were passing the rail station, I nipped in, perfect pee & continued the drive.

Almost home. Couldn't hold it any longer and had to pee into the pad. Success. All contained. Feeling good.

We pulled up the drive to the big round eyes of our jack Russel looking through the window. I quickly changed my pad, got her lead and took her for a walk. 5 mins from home, I had the sudden urge & had to let it go. Disaster. Completely missed the pad and ran down my leg.walked home sheepishly, confidence a little knocked.

Hoping tomorrow I can prepare and dress properly & master the pad. I'll be on with my pelvic floor stuff today.

All on all though, very pleased

Life's a Marathon. Run in peace.

User
Posted 29 Aug 2014 at 16:17

Hi Carlos

Thanks for keeping us posted and pleased the catheter removal went well.  The quick tug and it's out method adopted by some nurses is far better than a long drawn out affair that some seem to prefer.  They should be on the receiving end once in a while!

 

The "short range bladder" scenario will gradually disappear with time and with it will go the constant vigil for somewhere to pee when out in the car.

 

Find a nice slow ballad on your Ipod and do your "Pelvic floor stuff" in time with the music.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

 

All the best.

 

 

 

 

Roger
User
Posted 29 Aug 2014 at 20:34
Carlos

It is good to be positive and optimistic but do not expect instant 100 percent success, I was lucky enough to be almost dry within a very short period but still had small accidents usually when getting up to go after feeling the urge. Do not delay going when you get the urge but do not go "just in case". Three months post op I slept through the night and could push four and a half hours between visits. I then had a set back with slow flow rate ,this may have helped with the continence, about three weeks ago I had the bladder neck stretched and a catheter for 7 days, post catheter removal, the frequency and urgency increased but overall continence was still fairly good and I now pee up to 20 ml /sec. Slow flow was a result of a clip from the surgery migrating into the bladder.

I now plan journeys with a bit more thought and prefer motorways where services are more frequent. Quite often get up once in the night and manage about two hours between visits during the day. I have a urine bottle with sealable lid from the big high street chemist (about £3) and a towel in the car just in case, not had to use it yet but gives me peace of mind.

My catheter removal was similar to yours had to drink two jugs of water over a two hour period, told not to rush it, was given three bottles, did three samples given a scan and got kicked out.

Keep mobile but take it easy

Thanks Chris

User
Posted 09 Sep 2014 at 22:31
Hi guys

10 days post TWOC & things getting just a little better each day.

My main issue seems to be urgency. When I've gotta go, I really have gotta go or else.

That said, last night was epic. I went from 11pm to 7am between wees & passed 400mg. I've been dry all night from the outset & been without a night pad for a week but getting up has been at least twice.

I've got rid of the plastic mattress protector, it was making me sweat a lot & placed puppy training pads under the sheets just in case.

A long way to go yet. I'm still very sore & get tired very quickly & I have to be really conscious of not overdoing things.

Not sure when I'll be ready to face work or the long commute each day. Seems a while off yet if I'm to recover properly.

Carlos

Edited by member 09 Sep 2014 at 22:35  | Reason: Not specified

Life's a Marathon. Run in peace.

User
Posted 10 Sep 2014 at 19:42
Carlos

I wore a pad under my briefs then wore Tenna 4 pants over the briefs when in bed, so no need to worry about not being on the puppy pads and no sweating even in the hot weather. Re use the pants unless you leak.

Urgency will get better but I still go as soon as I get the urge.

Thanks Chris

User
Posted 11 Sep 2014 at 12:26

Be patient. Do the pelvic floor exercises three times a day but don't over do it. And be patient.  

 

I'm very nearly dry now (17 weeks). I only wear a shield in the early evening as I still tend to have a couple of spots around that time. It's great to wear your clothes and not have a pad in your underwear. I admit I still put a shield in when we go out - just in case - but I think that will end as confidence increases.

 

 

Gillick: Which it will be ready when it's ready.....

Patrick O'Brian

 

 

User
Posted 11 Sep 2014 at 21:56

Don't over do it Carlos listen to your body,its had a good hiding and needs time to recover,it was 8 weeks before I went back on light duties and a further 2 weeks after that before full time on 12 hr shifts.

User
Posted 15 Sep 2014 at 22:12
It's 4 weeks since my LRP & tomorrow I return to see the consultant about my histology.

I'm hoping I get an appointment for the PSA test then too!

I've started to take cilias this week. No affect & very dishearteneng. I know it's only early days & time needs to play a part in healing.

Activity wise, I'm still very sore & swollen around my middle, especially on the left where the prostate was withdrawn. I can walk & run a little but I do get very tired & my family tell me I go very pale so I'm trying not to overdo things.

Continence wise, I'm making good progress & going to see if I can get smaller pads to try. Stress & urgency are the main ones. I've had a full disaster twice & even then, the huge things I've been given don't hold everything so I've taken to carrying a 'man bag' with spare underwear & trousers.

I'm doing a 7 mile race on Sunday. Very hilly. My last years time was 48 minutes. This year, I'm going to start at the back & make sure.i stay at the back so as not to risk hurting myself. It may take me an hour and a half but taking part & finishing will be both the challenge & the reward.

I've got no control running, I dribble constantly but it goes down the front of my leg so not caused any issues with chaffing or soreness. I have a marathon in 8 weeks so thinking I need to pack my camelback with wipes, 3 changes of shorts & pants & change every 7 or 8 mile to stop things getting too bad.

It's a hard slog & seems one step forward, 2 back occasionally.

Life's a Marathon. Run in peace.

User
Posted 19 Sep 2014 at 15:22
The post LRP consult was positive.

No surprises. My Gleeson remained as 6 and my prognosis T2.

No cancer was present in the margin taken from around the prostate so good news.

I gave a blood sample for a PSA test & arranged to have another in 5 weeks, then a consult in 6 to discuss them both & hopefully see a nice drop.

I also left a urine sample as I'm still very sore passing water so a check for infections.

Urine control appears to have plateaud. I still dribble when getting up, sneezing, coughing etc & upon urgency to pass water.

I was dribbling today doing my daily pfe's which was a new one but I have had too many coffees this morning.

I'm 2 weeks into the cilias, with no affect. Hopefully I can see my gp next weak to progress a pump. He was reluctant last time but the consultant said I need to start using one soon.

It's great progress considering I'm only 5 weeks post LRP & hoping tiny improvements continue.

Onwards & upwards

Carlos

Life's a Marathon. Run in peace.

User
Posted 19 Sep 2014 at 17:55

hi glad that things are going well
re cilias paul is only just starting to get an effect from taking them and he is 4 months post op
so give it time
marie

User
Posted 19 Sep 2014 at 23:16

I started Cilias 2 months ago but had to come off them due to side effects, mainly refux aka, heartburn,

every time I ate something I  suffered cronic heartburn / indigestion / reflux, it took a while for it to establish it self, and for me to figure out what was happening,   now I pay attention and make a mental note of the side effects on medications !

 

 

 

Edited by member 19 Sep 2014 at 23:23  | Reason: Not specified

User
Posted 21 Sep 2014 at 13:20
5 weeks post LRP, ran properly For the first time today. 7 mile road race through the staffordshire moorlands. Decided from the outset that I wouldn't push myself & if I felt any discomfort I'd slow to a walk.

All was good. Could feel that speed had gone in my legs & feet felt heavy but was delighted to even make it to the start line. The wicker running gear even helped to evaporate the dribbles as I went 😜

Finished in 65 minutes which is a good 10mimutes down on last year but over the moon to think that I can come back from this.

Slow marathon training starting tomorrow. Hope to complete the cotswolds race on November 16th. All 28.8 miles.

I'd planned 10 marathons for 2014. I hope to finish on 9 & make up for it in 2015 with 11.

All good 👍

Life's a Marathon. Run in peace.

User
Posted 21 Sep 2014 at 14:46
Hi Carlos,

Well done!

Must feel good to get back to running again. Just take it easy and listen to what your body's telling you.

I know we can all push ourselves really hard in races but sometimes we have to listen to what the body is telling us. We can all underestimate how long it can take to get over our treatment, I'm struggling to deal with losing muscle strength on hormone therapy, difficult when I'm trying to train to run the Reading Half Marathon. I've never felt so weak in my legs before.

Anyway hope everything continues to go well for you. You're in a great position to beat this dreadful disease.

Take care.

Steve

User
Posted 23 Sep 2014 at 15:04
Thanks Steve & good luck with the training for reading half. New flatter & faster course for 2015 I understand so looks promising.

I've decided to park time for 2015 & just concentrate on making sure I'm on the start line & finish safely.

It's great to have a target & a reason to keep in shape & focus on the future. Total respect for you mate. I'll be rooting for you all the way.

Keep in touch about the training & best wishes

Carlos

Life's a Marathon. Run in peace.

User
Posted 27 Sep 2014 at 12:28
Blocked Urethra.

4 weeks post TWOC, life going swimmingly, almost back to pre LRP until last night at the pub after a meal with friends. Couldn't pee. Didn't think much of it at first, re visited half hour later, needed a wee, nothing came out.

Wasn't painful so walked home, tried again, starting to feel urgent. Called the ward, who told me to go to A&E.

By the time I got there, it was approaching 4hours since last passing water & the pain was immense. I felt on the brink of passing out. The staff were fantastic. I was seen too straight away & the catheter came as a huge relief.

The Dr spoke to the urologist who advised it was likely to be the scab at the bladder neck & I was sent home with a couple of night bags & told the district nurse would visit me over the weekend.

The urologist advised the catheter stay in for a further 7 to 10 days & I drink plenty of fluids to flush things through.

It's come as a set back, though far from the end of the world. Guessing my marathon booked for 6 weeks time will have to be defered until next year & I'm back in my Garden View chair with my tea pot for a week or so.

Bugger!

Life's a Marathon. Run in peace.

User
Posted 27 Sep 2014 at 19:05

It's great you can think about next year. Relax and keep improving.

Paul

Stay Calm And Carry On.
User
Posted 27 Sep 2014 at 19:29

 

when I had my catherter removed I was told to drink plenty and come back in an hour or so as they wanted to make sure I could pass water, I hated having the damn thing in and I was pleased as punch that it had been taken out

.....unfortunately I couildnt pee,  felt like I was going to blow up, I was getting in a desperate state, cold sweats , about the pass out, looked and felt like death I was in the urology department waiting room on my own, I laid accross some chairs trying to get some comfort, fortunatly someone walked in took one look at me and asked are your all right....no please get some help, a nurse came and nearly carried me into a room, it was panic stations, I was the last patient on a friday afternoon, the palce was deserted

I was ready to beg them... put it back in....they did relief was slow in coming, a doctor was summoned, an eye specialist ! , somewhat bemuse and confused as what to do, eventully an ambulance was called and I was packed of to A&E, I thought wait until I tell the Mrs, I convinced her not to come along this afternoon, anyway I was checked over and discharged within an hour and told to go back to the hospital in a weeks time to have it removed again, I did and it was sucessful , never did find out what the problem I was ,

but I do having a lasting memory of not being able to pee and about to pass out in desperation, Carols you have my sympathy,

I wish you well and hope the issue is resolved quickly....good luck

User
Posted 27 Sep 2014 at 20:27
Carlos

Have a look at the link below not likely it is quite rare but it has happened to me and I am seeing my consultant next week, suffering from reduced flow again.

http://www.cancercompass.com/message-board/message/all,74403,0.htm

Thanks Chris

User
Posted 28 Sep 2014 at 00:11
Thanks guys,

Chris, that sounds awful mate. Hope they sort you out!

John, sound similar to my situation but bizarrely I had my original TWOC 4 weeks ago and had no problems until now. It felt like the urethra connection to the bladder had healed over or something and it took 2 nurses to get the catheter up and in.

I was shaking with pain, my heart felt like it was going to leap out and I couldt catch my breath. A frightening situation which I hope is never repeated. I was exhausted afterwards and fell straight asleep in A&E. It's knocked my confidence as pre op, I enjoyed fell running and extreme marathons. Often dissapearing with little more than a drink, few snacks and my camelback for 6, 8 hours a time in remote spots.

If this happens again when I'm out on a trek, I'll be snookered. Was thinking of talking to the consultant about self catheterisation to give me a back up plan for the future.

Life's a Marathon. Run in peace.

User
Posted 28 Sep 2014 at 01:32

It seems from posts on this forum that this is more likely after LRP and rare after open surgery yet people still advise newly diagnosed men that keyhole or robotic is the gold standard.

Carlos, I hope the problem settles down once this catheter is removed but yes, it might be sensible to carry a small catheter around with you until you are sure.

Edited by member 28 Sep 2014 at 11:41  | Reason: Not specified

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

User
Posted 28 Sep 2014 at 12:38

Lyne

I was only offered the option of LRP or RT, I did get a second opinion privately and was offered open surgery but the distance to home was not appealing. I was discussing different options with one of our urology nurses and she said "we no longer offer open surgery" but you do have to sign a consent form that says you agree to converting to open surgery if required. Is it down to money, beds and predicted recovery time ?

Thanks Chris

Edited by member 28 Sep 2014 at 21:42  | Reason: Not specified

User
Posted 28 Sep 2014 at 19:32

Carlos
It sounds like bladder neck stenosis ie narrowing of the bladder neck that can occur following RP. I have this problem in that I have a reduced flow.

They were going to rectify it under a GA last year. However following a chat with the surgeon literally on the operating table we decided to leave it. The reason being although my flow is weaker (I can't pxss over a fence as the aneathatist said) it isn't effecting my quality of life ie not up through night, no urgency etc...but he warned if I had the op to put it right I could end up incontinent . Hopefully it won't get any worse
Hope yours is resolved soon

Bri

User
Posted 29 Sep 2014 at 10:29
Thanks guys.

Mine was a total blockage & quite scary. Will hopefully all be sorted when the catheter is removed. I can't understand why the Urologist wants it in for 10 days. Surely once the blockage was cleared, the urethra & neck are clear to run freely.

Going to put out a call to my consultant today & see what he thinks.

If I've got to have any further treatment for a neck restriction, I'd like to have it before I go back to work. I don't think I could stand another disruption in attendance. My employers have been fantastic & I really don't want to upset them any further.

Life's a Marathon. Run in peace.

User
Posted 30 Sep 2014 at 15:14

Hi Carlos,

Hope everything's going well now. 

I'm sure you'll overcome any problems that are thrown at you.  Hope I can get to the level of fitness you have (normally).  It's hard going at the moment, but I'm never giving up. I've told my wife that I'm doing the Reading Half even if I have to walk or even crawl round it!  I know in some ways, I'm trying to regain my youth but my fitness can only improve my chances in my fight against PCa. 

On the subject of my younger days, I don't know if you're a member of the B2PCa Site (worthwhile joining if you're not) but I have posted an old photo in their gallery section of me taken during my running days.  Can't believe I was so skinny.  That can only be achieved by running 40 or 50 miles a week.

Anyway, keep in touch.

Steve

 

 
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