Diagnosed today, looking for support.

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User

Posted 26 Jun 2022 at 12:03

Hi BR

I hear you! Shock, disbelieve, it can’t be happening to me I feel healthy plus so much more. Lean on this forum, no question is a silly question. I’ve had great support from wives whose husbands were ahead of mine and from guys too who have given me (us) great support. It’s a bloody ordeal that’s for sure (I refuse to call it a journey). Once you have a plan you will feel more in control. My oh is 3.5 months post op and is doing great. No continence issues, ED is another story and something we are about to embark working on. It’s tough, lots of great advice on here. The specialist nurses on here are fabulous and can help with what you are going through mentally. It’s hard to process (not sure my OH has yet).

The sooner you start to do your pelvic floor exercises the better 👍 hopefully you have a cancer nurse specialist to talk to as part of your surgical team. You don’t mention chatting with an oncologist and I’m assuming that hormone therapy/rt is not an option but you need that explaining to you so you are fully aware of your situation. Yes the surgery is radical, it’s doable and i never throught that 3.5 months post op we would be where we are! Hang on in there and lean on us!

User

Posted 26 Jun 2022 at 12:04

My husband ended up having his catheter in for 4 weeks as he had a very slight leak in bladder after bladder neck reconstruction, so they left it purely as a precaution.

He managed really well with it. I had bought instilagel incase it rubbed against the tip of penis but he never got any discomfort. He also had no leakage from it so at night he felt comfortable sleeping with no underwear and just dropped the bag in a bucket. In the first week we had one day where we probably walked a bit too much and the urine turned pink. There were also a couple of times where he would get little blood clots just from debris I think, but it would block the catheter. We phoned the hospital and could have gone back to get it flushed but after some manoeuvring managed to get it flowing again. We did a long car journey, few hour train journey all with no problems.

We did have one incident where we went out for our sons birthday for a meal. He had gone to the toilet to empty his bag and then came back to the table. When we went to leave the restaurant there was a little puddle on the floor and he had a wet leg 🤦🏻‍♀️ Moral of this story….never forget to close the tap after you have emptied your bag 😂

I thought he would hate the catheter and really struggle but he just found a routine with it and took it in his stride. Hope you have a similar outcome if you do have the op.

Just to add it was Christmas time and when it was getting blocked a bit I did worry. Christmas day I posted on the forum for advice and got a few really helpful responses almost immediately….this forum and the people made things so much easier for us.

Edited by member 26 Jun 2022 at 12:13 | Reason: Not specified

User

Posted 26 Jun 2022 at 13:03

Hi Bollyrotten, just to give you some good news. My OH was diagnosed in Feb 2022 with T2a, Gleason 4+3 N0M0. We looked at all the options and OH finally decided to have robotic surgery 19th May. He is recovering very well, doing long walks, totally dry at night and using 2 pads a day . ED is slowly showing slight signs of improvement despite only one sided nervesparing. OH is 68.

Wishing you and your family all the best

User

Posted 26 Jun 2022 at 13:53

Catheter ain't too bad. I actually found it quite convenient when drinking with friends, and nice to be able to get a full night's sleep. Not saying I wasn't glad to be rid of it after a week though.

Dave

User

Posted 03 Aug 2022 at 00:46

Hi Bollyrotten.

Hope you are doing well.

I wanted to say your story really hit home with me. I went through the exact same emotions. I have a son of 9 too and it was a tough thing to have to tell him. But we did it in a very child friendly way but gave him all the details but in a way that he was able to relate to and understand without being scared and he has been great. (We compared it to pokemon which he loves)

I was diagnosed 2 months before my 40th birthday and felt that it was ruined too. But I did manage to have a small party in the garden with close family. I’ll have the proper party next year and everyone will think I’m a year younger!!

I had my surgery at the end of June and am 5 weeks post op now. It was a relief to get the catheter out but having it in wasn’t as bad as I thought.

I wanted to say that for me it’s not as bad as I had thought afterwards. I did have a little incontinence afterwards but am mostly dry for the last 2 weeks or so. Just an odd drop during times of stress like coughing bending or going down stairs. But that is getting less and less by the day.

As for the emotional side of things I found it very tough at first. It’s still a tough at times but you do learn to cope. I contacted a cancer support group over here and it was great to talk to a counsellor (not something I ever dreamed I would do) it did really help. A very kind gent from this group contacted me privately and pulled me out of a pit and gave some great practical advice.

Keep talking and it will help.

Wishing you all the best.

User

Posted 03 Aug 2022 at 00:51

I forgot to mention above that I too was told that they could only spare the nerves on one side. After the op the surgeon said he had managed to save some nerves on both sides. So there may be hope there. As for the little chap working again it’s early days but I have noticed a very slight stirring. Nothing dramatic but perhaps enough to reassure me that his days of standing to attention may not be over after all.

User

Posted 03 Aug 2022 at 18:32

Same age (50 at diagnosis), same Gleason and grade group, same recommended path.

Also a bit of a cock-up in how I found out. Also a Youtuber (although I elected to not go public as I didn't want to deal with people's reactions - it's bad enough dealing with your own and family's reactions. That's a personal choice for you).

Have a read of my profile. I hope you'll find it encouraging. And do keep asking questions. Someone on here will have an answer for pretty much everything you can think of.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

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