RP December 16th 2019

User

Posted 28 Dec 2019 at 08:48

Hi Dave

I will admit during the earley stages after catheter removal I did have moments of concern. But kept going back and re-Reading the profs notes and time and time again the message was ‘time’. Seems this part is true so as I was advised by another chap who was a month ahead of me on the journey.....’just relax and be patient’ :-)

I have a pretty back lower back too thanks to Windsurfing and a faulty mast foot up haul line back in 2003. If your water works we’re fine before the prostate issues then fingers crossed should be where you can expect to get to once things have settled. Albeit with the odd stress related leak.

Give it a few weeks. Apparently biggest progress curve is the six week mark when stitches start to dissolve then should also see slow improvement over the year as scar tissue settles.

No regrets as this was the best path and got the tumour out. Fingers crossed no cells went on a grand tour or strayed during biopsy/surgery.

Certainly feel a lot more relaxed this side of surgery that’s for sure :-)

User

Posted 28 Dec 2019 at 10:21

Thanks for input and it helps to know that people have been successful with the surgery option. Looking for to the 6 week mark.

User

Posted 30 Dec 2019 at 08:39

I have just been reading past posts from people who have had similar treatments. Someone mentioned using a bag with a sheath when leaving the house and walking anywhere. Just wondered why most people Don, t seem to use these and prefer pads/nappies instead. I am currently using around 4 nappies + 4 night pads per day. This could work out quite expensive. Would using the sheath and bag not be a cheaper option. Is this kind of thing supplied by the NHS. I am thinking of giving the Incontenence Assessment a call this morning and see what they can do to help.

User

Posted 30 Dec 2019 at 09:13

Good luck with that; in our area you don’t get any help with pads etc until you have been incontinent for 6 months.

The sheath is called Conveen. It is not ideal for a man to have one so soon after surgery and many urologists would be very unhappy for their patients to have them; the thinking is that it makes you lazy and impedes the brain from relearning the bladder control needed. It is also difficult to fit if your penis is very shrunken post surgery. Conveen is a good solution for some men who have been left with longer term incontinence.

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

User

Posted 30 Dec 2019 at 09:38

Originally Posted by: Online Community Member

Wow pads are only lasting about 30 mins to about an hour. This could work out expensive. I give my doctors a ring to see if I can get them on prescription. No way Hosay.

That sounds wrong. However, you may need to contact your local continence service. We had a talk from the local one at the Reading Prostate Cancer Support Group, and they said you can refer yourself - no need to go through GP. They do the prescriptions, same day - much faster than GPs, and deliver very quickly. Some members in the audience who use them said they were excellent.

User

Posted 30 Dec 2019 at 10:33

Originally Posted by: Online Community Member

Good luck with that; in our area you don’t get any help with pads etc until you have been incontinent for 6 months.

The sheath is called Conveen. It is not ideal for a man to have one so soon after surgery and many urologists would be very unhappy for their patients to have them; the thinking is that it makes you lazy and impedes the brain from relearning the bladder control needed. It is also difficult to fit if your penis is very shrunken post surgery. Conveen is a good solution for some men who have been left with longer term incontinence.

Thanks for clearing that up for me. The Incontenence assessment place is closed until after the holiday anyway

Just bought some Boots own brand of pants which seem the most reasonable so will try these out and compare them with Tena which are much more expensive

User

Posted 30 Dec 2019 at 15:16

Keep an eye on the supermarkets; most do regular 'buy one get one free' offers on Tena.

It may seem obvious but you are buying the men's pads and not the women's, aren't you?

Andy, like everything else it is a postcode lottery. Leeds CCG does not allow GPs to prescribe pads, once you have been incontinent for 6 months you can get free pads from the district nursing team. Similarly, in Leeds there are no district nurse visits post-OP :-(

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

User

Posted 30 Dec 2019 at 16:03

Originally Posted by: Online Community Member

Keep an eye on the supermarkets; most do regular 'buy one get one free' offers on Tena.

It may seem obvious but you are buying the men's pads and not the women's, aren't you?

Andy, like everything else it is a postcode lottery. Leeds CCG does not allow GPs to prescribe pads, once you have been incontinent for 6 months you can get free pads from the district nursing team. Similarly, in Leeds there are no district nurse visits post-OP :-(

Yes definately the mens pads. I didn,t know supermarkets sold them so will keep my eyes open.

User

Posted 30 Dec 2019 at 16:20

Sainsbury's and Asda sold the Tena mens grade 4 pull-ups that I used for a while during second half of RT and HDR brachytherapy. Often, one or other had a special offer. Finding where they were on the shelves was always an interesting challenge, and one of them listed the item on the receipt as female products (or some such).

They were overkill for me (I never let a bladder full go into one), but security was the main thing I was after - knowing I could pee into them if I had to. I did test one with half a litre of water and was very impressed. It soaked it up instantly, and you couldn't even wring a drop out.

User

Posted 30 Dec 2019 at 17:04

Like Andy I did a test on the Tenna 2 pads. I took my shoes, socks and trousers off, stood in the shower and let the bladder drain. The flow rate will make a difference, 170ml at a slow flow may be contained, whereas 170ml at a fast flow will run down your leg.

I do have a gripe with Tenna, they supposedly improved the range, ... by making the pads thinner.

Thanks Chris

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.

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.

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