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RP December 16th 2019

User
Posted 30 Dec 2019 at 19:23

Thanks guys. Lots of ideas to digest and consider but gradually getting my head around it . I now have a good selection of pants and pads. Hopefully by the time I need to order some more I will have a better idea what is more suitable for my needs and probably order a monthly supply at a time. I now have enough for about 2 weeks but don't expect to see much change in that time.

User
Posted 30 Dec 2019 at 19:47

Hope you make progress rapidly. I am pretty much dry since yesterday. Been stress testing with some cider and not leaked yet. The pants give extra reassurance. Yesterday when I did an airport run for my father I wore tena 3 pad just to be sure as 40mins each way. All was fine but you never know. One thing to consider with pads is which side you sit. I tend to sit with penis to the left so when I started to wet myself on night of 19th December some leaked out into pants mainly as the pad was only just covering the end. Still pretty impressive as to how it managed the liquid update/absorption. I woke just as it happened and managed to intercept before any leaked onto the sheets. After that I used kitchen absorbent tissues stuffed either side of penis to act as a buffer to the pads and ensure I didn’t see out the sides too easily. Hope that helps a bit but hopefully you with be dryer soon. I did the same with pads as bought 20-30 of each tena 2 and 3 pads just for reassurance.

User
Posted 31 Dec 2019 at 08:51

After the busiest day so far yesterday. Went out twice once in the morning and once in the afternoon to buy a new smart TV. (Told my wife it's part of the healing process) and booked someone to deliver and fit the TV for us. Felt rather tired but otherwise all was fine. This morning I am a bit worried as I was definitely passing a bit more blood than usual and quite painful in the pubic area. After taking some Ibuprofen, the pain has subsided. I now drinking loads of water and beginning to think have I done too much yesterday? Also wondering is it wise to stop drinking at 7 pm the night before as the blood is therefore more concentrated as my bladder has usually been quite empty in the morning if I have been up during the night. Hopefully this is nothing to worry about and will take it a bit easy today and drink plenty of water.

Edited by member 31 Dec 2019 at 08:53  | Reason: Not specified

User
Posted 31 Dec 2019 at 09:45

May be you did a bit much. Drink more and rest up. Agree with Kev re evening drinking.

Edited by member 31 Dec 2019 at 10:18  | Reason: Not specified

User
Posted 31 Dec 2019 at 10:04

Hi Dave,


I guess our bodies have a way of telling us when we've over done it after the event, but it's never easy knowing how far is too far while we're recovering.


I kept up fluids until 7 weeks post op when my urine ran clear before I started easing up past 7pm, my reasoning being that I wanted to avoid any water infections while I was still passing the pink stuff.


Soldier on!


Kev.

User
Posted 31 Dec 2019 at 10:18

Hi Dave


4k is excellent therapy that’s for sure :-)


I found walking or sitting on a firm seat brought on bleeding for a few weeks. Keep sipping water to flush things even in the evening is my view as important to keep it diluted. I suspect it should settle with taking it easy and reclining non the sofa. Pelvic discomfort will remain for quite a while as it heals...keep popping the meds.


If you are feeling concerns I would call the medical team for reassurance. I was lucky as had most of mine on email so easier to communicate as they tend to be busy or on rounds so hard to catch them on phone.


TG

Edited by member 31 Dec 2019 at 10:22  | Reason: Not specified

User
Posted 31 Dec 2019 at 10:53
Seems to me that you completely overdid things; going out 3 times in one day just two weeks after RP is bonkers. You may not look like you have had major surgery on the outside but on the inside, a lot of damage has been done and it needs time for everything to knit together. They say that it takes 5000 calories a day to recover from abdominal surgery. You are at a significantly increased risk of hernia and when you look at men here who have problems recovering their continence / erectile function they are often the ones who did too much in the early stages. Give your body a rest.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Dec 2019 at 11:23

Thanks guys. Should of listened a bit more. Decided to give 111 a call and now sitting in Urgent care centre which is about 5 miles away. Very sore after journey ii the car. Before setting off some relief standing but blood in urine cleared before leaving.

User
Posted 31 Dec 2019 at 11:38
A lesson for us all Dave. Hope it's nothing too serious and that your back on the mend soon. As someone who is always busy, resting and recovering takes an enormous amount of self discipline - quite difficult at times!
User
Posted 31 Dec 2019 at 12:06
Cheers guys for the support. Seen the Triage nurse. So now waiting to see the Doctor. Wishing I had stayed at home and rested. As it was an appointment. I expected to be seen fairly quickly. Unfortunately it doesn't seem to work that way and only brought enough pads for a few hours.
User
Posted 31 Dec 2019 at 12:56

Do hope that you get seen soon and get some help. 

User
Posted 31 Dec 2019 at 13:56

Thanks everyone for the kind words. Back home now after seeing the doctor. Who did a urine test. Good news he says I have a water infection so back on the same antibiotics I was on after the biopsies treatment were taken. So hopefully nothing to worry about and eased my concerns although still quite painfull. Especially after changing my white socks.


Some good news after drinking loads of water and waiting an hour and a half. I really put the inconvenience pants through their paces. I am amazed at how much water they hold and believe I have been throughing them away to early.

User
Posted 31 Dec 2019 at 15:57

Take it easy Dave! Hope the antibiotics kick in soon!

User
Posted 31 Dec 2019 at 16:08

Originally Posted by: Online Community Member


Take it easy Dave! Hope the antibiotics kick in soon!



Thanks. I hope so too. Doctor said it's quite common when your Urethra is shorter and with being incontinent. I have been very careful trying to keep myself clean and washing down below every time I change my pads/pants and showers twice daily. But still end up with an infection. Anyway good to hear you are doing so well and long may it continue.

User
Posted 31 Dec 2019 at 18:57

Take care Dave hope that the antibiotics kick in soon. . Hubby had infections after prostate biopsies just lucky not to have had a UTi after surgery. Sure you are going all the right things. Happy New Yesr.

User
Posted 31 Dec 2019 at 20:00

Thanks for the input Buckslady and happy new year.

User
Posted 01 Jan 2020 at 09:51

Originally Posted by: Online Community Member
Seems to me that you completely overdid things; going out 3 times in one day just two weeks after RP is bonkers.......You are at a significantly increased risk when you look at men here who have problems recovering their continence / erectile function they are often the ones who did too much in the early stages.


Maybe I would be enjoying rampant teenage erections again in what’s left of my penis if I hadn’t gone to the pub three times on my day of discharge from hospital, but somehow I doubt it.


I only did what I felt comfortable with post op, and I feel so grateful for my ten-day recuperation compared to the suffering and incontinence of others here.


Anyway, get well soon, and a Happy and Healthy New Year to all!


Cheers, John.

User
Posted 01 Jan 2020 at 11:14

Be honest, did you enjoy rampant teenage sex when you were a teenager????? 🤣🤣🤣

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Jan 2020 at 15:51

Originally Posted by: Online Community Member


Be honest, did you enjoy rampant teenage sex when you were a teenager????? 🤣🤣🤣



Yes, with a lovely girl called Miss Palmer 😉


Cheers, John.

User
Posted 01 Jan 2020 at 22:52

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
Seems to me that you completely overdid things; going out 3 times in one day just two weeks after RP is bonkers.......You are at a significantly increased risk when you look at men here who have problems recovering their continence / erectile function they are often the ones who did too much in the early stages.


Maybe I would be enjoying rampant teenage erections again in what’s left of my penis if I hadn’t gone to the pub three times on my day of discharge from hospital, but somehow I doubt it.


I only did what I felt comfortable with post op, and I feel so grateful for my ten-day recuperation compared to the suffering and incontinence of others here.


Anyway, get well soon, and a Happy and Healthy New Year to all!


Cheers, John.



 


I love what you say about what's left of my penis..... this is definitely and visibly noticable for me. I knew it was a possibility give the fact that the urethra is pulled back after the prostate is removed to make the new join - I recon I've lost an inch at least 🤣🤣🤣🤣 

User
Posted 01 Jan 2020 at 22:59

John


You knew her too... 🥴


TG

User
Posted 01 Jan 2020 at 23:08

Hi BHP


i noticed a little less but not as much as I expected. One of the first things I checked post op as expected a press stud. Post catheter removal already ‘test drove’ it with the good lady and she said it’s at 70%. Started on tadalafil daily. Prescribed was 5mg to flatten the curve of usually dose. I’m actually taking 2.5mg (snapped in half) a day. From day 5 I got semi erection even though some nerves were taken to increase margin. At the moment things exceed expectations and are penetratively useful. Not like the old days buts it’s still early days. 


I got a prescription for tadalafil but also bought privately as didn’t want to wait over Xmas period. 


TG

User
Posted 02 Jan 2020 at 09:46

Hi DaveBaxt


Thinking of you and hope infection dealt with infection and that you start feeling better.


Reading posts here of the complications, discomfort and difficulties some men have had, makes me realise just how incredibly fortunate I have been.


I am 5 weeks post RARP with none of the SE that I was worried about; apart from the shoulder pain and difficulty in getting a good nights sleep in the first week, I have had no incontinence issues at all and ED does not appear to be a problem either.


Best wishes for full recovery in 2020.


Grant60

User
Posted 02 Jan 2020 at 10:20

Third day on Antibiotics and 1 week since TWOC. Feeling much better,however I still have pain in my hip and top of my leg front. I noticed this the day after the operation and explained this tenderness to the surgeon who explained this was probably trapped gas where the robot has been inserted. The pain is somewhat worse since I picked up the infection. Its worse after sitting/ lying for long periods.Then getting up to walk around usually the pain eases when walking around for a bit.Hopefully this is nothing to worry about and will ease with time.


Regarding the Incontinence. I am still using 4 or 5 pads per day but drinking fluids right up to bedtime. My pad during the night remains fairly dry until the morning. However when I wake up its because I have slight pain to go to the toilet and have good clear flow when emptying my bladder. This happens once through the night as well.During the day the leaking issues are when getting up and down and walking about. Not sure if there is any improvement as I am allowing the Pants to fill right up. Almost too heavy to wear.Haha

User
Posted 02 Jan 2020 at 10:24

I was leaking just after my HDR brachytherapy. I weighed the pads new and after use, to work out how much I'd leaked (but as readers may recall, I measure just about everything).

Edited by member 02 Jan 2020 at 10:26  | Reason: Not specified

User
Posted 02 Jan 2020 at 16:26

I got in touch with the district nurse to arrange an incontinence assesment and she is calling around tomorow,


Apparently I can receive up to 4 pads per day depending upon how bad the incontinence is. Although I am only using pads inside the pants as they are easier to change and extra protection, any help with the cost will be appreciated.

User
Posted 04 Jan 2020 at 20:20

How are you getting on Dave?

User
Posted 05 Jan 2020 at 07:04

Just about finished the antibiotics and feeling much better no blood clots and pee clear. Unfortunately the antibiotics have made me constipated but doubled up on the laxative and eventually got going again. I still have some pain at the side of my stomach but suspect this is due to chronic back pain and sitting about more than usual. Getting out for a short walk each day which is helping. Regards the pads. The NHS are supplying 3 months worth at 4 per day so that is a big help. Hope you are still making progress so keep us posted.

User
Posted 08 Jan 2020 at 10:52

Finished the antibiotics a few days ago and all is well in the prostate area ie no pain and clear urine. Still preforming the PFE. I can even sit on harder surfaces for a while. Unfortunately I am still having pain issues in my left hip and the side where the wounds were.. I am now 3 and a 1/2  weeks post operation.Due to having complications with  Cronic lower back pain I have started walking as this has always helped my back problem prior to the RARP .Yesterday I walked about 1/2 mile . The pains in my left side have returned with a vengence and once again wondered if I have over did things,although my last visit to the GP, he assured me I was not over doing things. I still have an issue with soft stools even though I have backed off the laxatives when I finished the antibiotics and only have a small glass of prune juice in the morning.I have tried several times to speak to someone in the urology department in the hope they confirm this is nothing to worry about and will settle down but not having any joy so far.


I am hoping that all these things will eventually settle down and appreciate I might take longer than most people due to lower back pain. However I do worry more than most people and believe I have a low pain threshold I do hope anyone reading this thread is not put off having RARP as I am sure for most people would not encounter this problem. Any comments would be greatly appreciated.Thank you .


 

User
Posted 08 Jan 2020 at 11:15

Hi Dave 


Sounds like good progress thus far.


Lower back pain was a big flag for me too. I worked out a very light Pilates routine based on the NHS Pilates online video which helped quite a bit. Just some basic stretches etc but obviously going to be case specific. 


Just keeping it flexible and mobile seems to help. I’m six weeks in today. Sitting at computer still painful so just remote access main system with laptop remotely from the sofa. 


Things are settling so hang in there. Seems some big improvements in the last week in terms of no drips/leaks plus erections appear to be back to pre-op levels (taking tadalafil 2.5mg every 12 hours - I break tablet in half). 


How is the continence progressing?


 

User
Posted 08 Jan 2020 at 11:28

I think you are making great progress Dave - stick with it!!!


I also walked down to town and back yesterday for the first time - about 3/4 mile there and back. I knew it when I got back, but a few ibruprofen sorted that, although my tummy was sore on both sides when I went to bed.  Like you I can sit for longer now, and I'm about 90% back to normal on the bladder front - although still have a bit of stress incontinence, so padded up (level 1 from today).  PFE still continue and I can feel that deep inside things begining to ease as well.  Onwards ever upwards!!

User
Posted 08 Jan 2020 at 11:31

Originally Posted by: Online Community Member


Hi Dave 


Sounds like good progress thus far.


Lower back pain was a big flag for me too. I worked out a very light Pilates routine based on the NHS Pilates online video which helped quite a bit. Just some basic stretches etc but obviously going to be case specific. 


Just keeping it flexible and mobile seems to help. I’m six weeks in today. Sitting at computer still painful so just remote access main system with laptop remotely from the sofa. 


Things are settling so hang in there. Seems some big improvements in the last week in terms of no drips/leaks plus erections appear to be back to pre-op levels (taking tadalafil 2.5mg every 12 hours - I break tablet in half). 


How is the continence progressing?


 


I am still using 4 pads per day but changing them more often rather than waiting until they are to heavy, Some days are better than others depending on activity and whether or not a forget to clench when getting up and going to the toilet. I have started measuring how much water as I was drinking more than usual whilst taking antibiotics. I am now drinking between 1.5 and 2 ltrs of water per day.

User
Posted 08 Jan 2020 at 11:34

Originally Posted by: Online Community Member


I think you are making great progress Dave - stick with it!!!


I also walked down to town and back yesterday for the first time - about 3/4 mile there and back. I knew it when I got back, but a few ibruprofen sorted that, although my tummy was sore on both sides when I went to bed.  Like you I can sit for longer now, and I'm about 90% back to normal on the bladder front - although still have a bit of stress incontinence, so padded up (level 1 from today).  PFE still continue and I can feel that deep inside things begining to ease as well.  Onwards ever upwards!!


Sounds like you are doing great especially on the incontinence front. Long may it continue.

User
Posted 08 Jan 2020 at 16:16

Just received some great news. I have just telephoned the specialist nurse to ask her about some of my symptoms and is it any thing to worry about. Also why do I need to wait until March for a follow up. She has confirmed there is a letter in the post regarding my results of my prostrate. Which is. All of the Cancer has been removed with negative margin.


She did not go into any more detail but that's good enough for me. Hopefully when I do go for my follow up I have a very low PSA and there are no stray cells.

User
Posted 08 Jan 2020 at 16:26

Dave


Fantastic news! Massive positive step in the right direction. 


A good excuse to open a bottle of bubbly and have a nice meal 🙂


TG

User
Posted 08 Jan 2020 at 16:28

Originally Posted by: Online Community Member


Dave


Fantastic news! Massive positive step in the right direction. 


A good excuse to open a bottle of bubbly and have a nice meal 🙂


TG


Sound like a good idea

User
Posted 08 Jan 2020 at 18:52

Brilliant news Dave.

Ido4

User
Posted 08 Jan 2020 at 19:14

Dave


Great news , really pleased for you, hope your recovery continues.


Thanks Chris

User
Posted 08 Jan 2020 at 20:17

Thanks for everyones kind words.

User
Posted 14 Jan 2020 at 21:43

So chuffed to read your good news!


I too had the result of my 6 week post op PSA reading today; 0.02 and confirmation of negative margin in the tissue removed with the prostate.  Next PSA blood test in 4 months when I hope the reading will be undetected.

User
Posted 14 Jan 2020 at 22:25

Cheers Grant. Good news for you too. As mentioned on another thread I am waiting for a PSA result after 4 weeks and will get to know shortly. Fingers crossed. Bit soon for my liking but hopefully PSA level has had time to drop to very low level.

User
Posted 20 Jan 2020 at 17:28

Update 5 weeks post op. Although still experiencing some pain . I think things are starting to improve.But still taking quite a few pain meds.I am still taking things very slowly and walking about 1/2 mile a day sometimes a bit further and pottering about the house a little bit more. Keeping up with the PF exercises but still on about 4 or 5 heavy pads per day. Generaly feeling a bit stronger but a way to go yet. Looking forward to buying some specialist trunks and go swimming again. As stated on an other thread just received news of 4 week PSA of 0.03 so another boost after finding out about a negative margin. I really feel like I am heading in the right direction.

User
Posted 20 Jan 2020 at 21:10

Hi DaveBaxt


Good news on the PSA reading.


Sorry to read you're still experiencing pain and having to use pads etc but as you say, one day at a time, onwards and upwards!  


Cheers


Grant 

User
Posted 20 Jan 2020 at 22:02
Thanks for that Grant. Yes one day at a time sounds like the way forward and mainly positive going forward.
User
Posted 21 Jan 2020 at 16:29

You are doing good for 6 weeks. One day at a time is progress. All the best in your recovery.

User
Posted 30 Jan 2020 at 16:53

Almost 7 weeks post op


        feeling much better this past week with minimal pain. Walking over 2 mile every day and feeling stronger.Not much improvement on the incontinent ,although I think there is some improvement compared to when I first removed the catheter. My question is regarding Urine storage systems . As I am a keen walker I can see a problem arising fairly soon and believe it wont be long before I can walk further than the pads will last. I am wondering if there is a product where I can empty a bag via a tube at the bottom of your trouser leg.Similar to the one attached to the Catheter. The ones I have seen are attached to your thigh and do not have a tube on the bottom to reach the bottom of your trousers. Also wondering is the thigh a better position when using a sheath? Rather than at the bottom of your leg. Any answers would be much appreciated.

User
Posted 29 Feb 2020 at 12:53

 Update 11 weeks post RARP.


Just received appointment for follow up appointment 3 months post op. A long time to wait to see Surgeon but most of the initial proplems with operation itself are gone. Almost back to where I was before the operation. Still at 50% where I was with incontinence after TWOC. So slow signs of improvement with this. I am still doing PFE daily and coping very well with using a combination of Conveen system and pads. All supplied free of charge.


Still no improvement with ED but to be expected as had to use viagra before surgery. This is to be discussed at the follow up appointment. I am also having another PSA test on Monday and hoping there will be a slight improvement on the one taken only 4 weeks post op which was 0.037. Fingers crossed

User
Posted 29 Feb 2020 at 13:28

Dave


Hope all goes well. 


TG

User
Posted 04 Mar 2020 at 15:16

Just received my latest PSA result 11 weeks post RARP for follow up appointment. 0.007 so well pleased with that. Long may the low level continue.

User
Posted 04 Mar 2020 at 15:17

Great news Dave. :-)

 
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