I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
<123>

Making my mind up

Email this conversation Print this conversation
User
Posted 18 Mar 2022 at 08:23

That’s the op all behind me - surgeon says it went really well. I am in a bit of pain from wounds but that should settle quickly. Now pleased to be entering a new stage of this journey, from diagnosis and treatment to recovery. I was late back from theatre yesterday so probably won’t go home till tomorrow but that’s ok - the staff are brilliant , huge kudos to the NHS and I have a room with a view …., of the QEUH helicopter pad πŸ˜‚πŸ˜‚


There was no sign of spread to lymph nodes, and surgeon spared nerves on both sides. Just need to wait 6 weeks till PSA and pathology and hoping for good news ( I was 3+3, M0, N0  at biopsy and scans )


 


oh - and after all my worry I hardly notice the catheter - first night in years I haven’t had to get up for the toilet πŸ˜‚


I am feeling good today, positive and relieved. Wishing you all a good weekend.


GG


 

Edited by member 18 Mar 2022 at 08:23  | Reason: Typo

User
Posted 18 Mar 2022 at 08:37

Fantastic news hope you recover quickly πŸ‘

User
Posted 18 Mar 2022 at 08:59

Great post πŸ‘πŸ½ Glad you’re on the other side and feeling ok. Wishing you a full and speedy recovery x

User
Posted 18 Mar 2022 at 09:01

Great stuff! 


The catheter is fun: you can see your hydration in real time and with a bit of effort can lay down a lovely sunrise layered pattern in the bag. I had a weird thing with the night bag: I used to fill it (1.5l) and thought: wow that’s a restless night when that comes out. But no: dunno what it was but now I NEVER pee at night. Amazing: fun isn’t it and hopefully it lasts for you too.


Well done 


 


SUM

User
Posted 18 Mar 2022 at 12:42
Catheter bag art? Not sure it'll catch on 😁.

Chris
User
Posted 18 Mar 2022 at 13:12

Originally Posted by: Online Community Member
Catheter bag art? Not sure it'll catch on 😁.

Chris


 


I make patterns with the blood clots in mine πŸ˜ƒ.


 


GG take it easy but keep mobile, don't be surprised if you bypass a little urine and a trace of blood out of the the penis. It often happened to me when passing a motion, a bit of tissue under the penis while sat on the toilet helps save wet underwear.  I was told Rosé colour in the bag should be okay but red wine colour needs attention. Don't forget the instilagel in case the catheter makes the penis sore. 


Get a couple of extra thigh straps, use one around your ankle to secure the night bag tube when in bed, it saves putting any strain on the bag joint. Make sure the catheter joints are tight, and make sure the leg bag tap is shut before disconnecting the night bag and don't forget to open the leg bag tap when you attach the night bag.


The extra thigh straps are useful when showering. I empty my bag a let it hang on the thigh strap ,when i finish showering I put a dry strap on the other leg and transfer the catheter and bag to the dry strap.


Make sure you empty your day bag before it gets more than half full. 


Hope all goes well.


Thanks Chris


 

User
Posted 18 Mar 2022 at 14:58

Originally Posted by: Online Community Member


That’s the op all behind me - surgeon says it went really well. I am in a bit of pain from wounds but that should settle quickly. Now pleased to be entering a new stage of this journey, from diagnosis and treatment to recovery. I was late back from theatre yesterday so probably won’t go home till tomorrow but that’s ok - the staff are brilliant , huge kudos to the NHS and I have a room with a view …., of the QEUH helicopter pad πŸ˜‚πŸ˜‚


There was no sign of spread to lymph nodes, and surgeon spared nerves on both sides. Just need to wait 6 weeks till PSA and pathology and hoping for good news ( I was 3+3, M0, N0  at biopsy and scans )


 


oh - and after all my worry I hardly notice the catheter - first night in years I haven’t had to get up for the toilet πŸ˜‚


I am feeling good today, positive and relieved. Wishing you all a good weekend.


GG


 



 


GG - great news. Wishing you a speedy recovery. Take things easy. This time next week im hoping my OH will be in the same position 🀞

User
Posted 20 Mar 2022 at 18:26

Home now - I was kept in another day since I struggled to get in and out of bed unaided - last 24 hours was much better so pain must be easing , and I have a menu of painkillers to help.


wounds all really clean. I have my appetite - only (minor) issues are tiredness and bowels not moving yet ( I am sure nature and some medicine will take care of that soon ). 


I have my catheter removal appointment on Thursday ( which means a covid test on Tuesday then self isolation ) - I cannot and will not fault the NHS but they seem determined to send me on a magical mystery tour of every hospital in the health board area ! I am getting about!


apart from that it’s just a matter of focusing on recovery , lots of rest and gradually build up my walks. 

pathology results are early May so a wee while to wait. Will keep you all posted on my progress in the hope it helps others on their journey, just as others have helped me.


 


regards, GG

Edited by member 20 Mar 2022 at 18:27  | Reason: Not specified

User
Posted 20 Mar 2022 at 21:43

Originally Posted by: Online Community Member


That’s the op all behind me - surgeon says it went really well. I am in a bit of pain from wounds but that should settle quickly. Now pleased to be entering a new stage of this journey, from diagnosis and treatment to recovery. I was late back from theatre yesterday so probably won’t go home till tomorrow but that’s ok - the staff are brilliant , huge kudos to the NHS and I have a room with a view …., of the QEUH helicopter pad πŸ˜‚πŸ˜‚


There was no sign of spread to lymph nodes, and surgeon spared nerves on both sides. Just need to wait 6 weeks till PSA and pathology and hoping for good news ( I was 3+3, M0, N0  at biopsy and scans )


 


oh - and after all my worry I hardly notice the catheter - first night in years I haven’t had to get up for the toilet πŸ˜‚


I am feeling good today, positive and relieved. Wishing you all a good weekend.


GG


 



great news the surgery is behind you GG and it sounds like you were really well looked after. Take it easy and wishing you well. Thank you for your pm. Look forward to hearing your progress.

User
Posted 24 Mar 2022 at 19:17

Another milestone today - 1 week after RALP the catheter was removed (strange sensation but not painful), I then spent a few hours on ‘Trial of void’ ensuring that my bladder was emptying and not retaining urine’, - pleased to say that all went fine.


Even more pleased to report that so far I see no sign of incontinence or leaking. I know it is very early days so I don’t want to get my hopes up  too soon but I’m happy tonight that the last week has gone as well as i could have wished for.


Tomorrow it’s back to those pelvic exercises in earnest. 


one quick question for those ahead of me on this journey, I feel my appetite is lower than before,  is that usual ? ( I tried to eat my normal intake yesterday but ended up with bad indigestion)


take care all,


GG

Edited by member 24 Mar 2022 at 19:35  | Reason: Not specified

User
Posted 24 Mar 2022 at 19:38
I was still in hospital with complications when my catheter was removed. Summer 2015. They stuck me in hospital scrubs and took me straight out to the front of the hospital for some sun and fresh air. I think the very thought of wetting myself in public was enough to stop any leakage. I was very very lucky with only drips for a few months. Good luck
User
Posted 24 Mar 2022 at 20:48

one quick question for those ahead of me on this journey, I feel my appetite is lower than before,  is that usual ? ( I tried to eat my normal intake yesterday but ended up with bad indigestion)


I lost a stone in eating less before (stress) and after surgery. It has been major surgery and you are still healing.


( Put the weight back on over Christmas and New Year ! Which was 6 weeks post op )

Edited by member 24 Mar 2022 at 21:04  | Reason: Additions

User
Posted 25 Mar 2022 at 15:14

Great to hear GG that your progress is going well.  I bet you were relieved to get the catheter out.  We are on Day 3 post RALP so following your progress.  All good so far.  My OH appetite has reduced, he's eating smaller portions, but after major surgery its be expected.  Wishing you well x


Originally Posted by: Online Community Member


Another milestone today - 1 week after RALP the catheter was removed (strange sensation but not painful), I then spent a few hours on ‘Trial of void’ ensuring that my bladder was emptying and not retaining urine’, - pleased to say that all went fine.


Even more pleased to report that so far I see no sign of incontinence or leaking. I know it is very early days so I don’t want to get my hopes up  too soon but I’m happy tonight that the last week has gone as well as i could have wished for.


 

User
Posted 25 Apr 2022 at 21:35

Thought it was time to post a wee update. I am now more than 5 weeks since surgery. Wounds have healed nicely and bruising has gone down. No pain to speak of, I was really tired until end of last week but feel I am getting energy back now and am planning to return to work next week. Almost completely dry, apart from occasional ‘post-pee’ drip. I am keeping up the Kegels. 

Looking forward to losing the Nora Batty surgical stockings on Thursday (six weeks since surgery). 


i went for my PSA test today ahead of next Fridays follow up appointment with the surgeon. I am a wee bit nervous so although I could call the GP in a week for the results, I think I’d rather wait for that appointment and get my pathology / PSA results at same time and be able to discuss both with the consultant.


I will post my results when I get them and am hoping / praying for good news.


regards, GG 

User
Posted 26 Apr 2022 at 08:47

Good news GG and I hope your post surgery results are as good as mine.


 


Ivan

User
Posted 26 Apr 2022 at 11:31

Great news GG that you are recovering really well. Best of luck for next week x

User
Posted 26 Apr 2022 at 23:23
Great to hear GG and hoping you get good results. We are a little behind you, PSA test for OH next Tuesday with results on 5th May. Anxiety is starting to build! Keep us posted and wishing you well
X
User
Posted 27 Apr 2022 at 13:17

Sounds like you are doing well. Best wishes for your follow up appointment.

Ido4

User
Posted 06 May 2022 at 17:23

Hi All, just a wee update. I  got my pathology results today. Prostate margins were clear and PSA was unrecordable ( consultant says < 0.1 is as low as they can measure ). My gleason was upgraded to 3+4 but fully contained.  I am now on to the standard blood tests every three months  - I’ll have a wee glass of 🍷or two over the weekend to celebrate πŸ˜€


Regards, GG

Edited by member 06 May 2022 at 18:32  | Reason: Not specified

User
Posted 06 May 2022 at 17:46
Hi GG
This is great news, so very pleased! Phew what a relief. Enjoy your glass of 2. So thrilled. Keep well x
User
Posted 06 May 2022 at 17:51

Good news indeed


 


Long may it continue


 


Ivan

User
Posted 06 May 2022 at 18:08
Nice one ! Don’t hold back 🍷
User
Posted 06 May 2022 at 22:02

Great news GG!! Congratulations and long may it continue. Hope you’ve enjoyed a few celebratory drinks x

User
Posted 07 May 2022 at 12:40

Great news. 

Ido4

User
Posted 08 May 2022 at 08:12

Great news , your results seem to be identical to my husbands. He has just had his second three month check and all is good. Still a worry though each time a test is due.

User
Posted 09 Aug 2022 at 15:45
Hi all, just checking in since today was a small but significant step on my post RP journey. This was my first regular check since the pathology indicated clear margins.
PSA is still undetectable, huge relief, I was a bit nervous but just need to get used to the regular checks. I am told it will be every 4 months in year 1, every 6 months in year 2&3, then annual until end of year 5.

Still almost 100% continent but no β€˜stirrings’ yet. I am awaiting an appointment at the ED clinic ( surgery was nerve soaring so I remain hopeful ).

Take care everyone, and enjoy the summer.

Cheers, GG
User
Posted 09 Aug 2022 at 16:47
It should be annual test for the rest of your life, it doesn't stop at year 5
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Aug 2022 at 17:19

Originally Posted by: Online Community Member
It should be annual test for the rest of your life, it doesn't stop at year 5


I am sure they said discharged after year 5 Lyn,  still - I’ll check at next appointment ( I wonder if it varies by health trust, I’d certainly prefer continued testing for peace of mind ) 


 

Edited by member 09 Aug 2022 at 19:32  | Reason: Not specified

User
Posted 09 Aug 2022 at 17:44

A really positive story GlasgowGuy. Thank you for sharing.

User
Posted 09 Aug 2022 at 19:22
I think discharge by the hospital means they hand over to your GP for monitoring.

(Not that I have experienced that, before the 5 years my PSA was starting to become detectable so I stayed with the hospital, eventually getting referred to oncology).
User
Posted 09 Aug 2022 at 19:35

Thanks J-B, that would make sense. 
I hope all is well with you and your treatment options are successful. 

Cheers, GG

User
Posted 09 Aug 2022 at 20:27

Great news GG, really happy things are going well. I’m not sure I’ll ever let Rob go from 3 monthly testing 🀦🏻‍♀️ although his situation has been a little bit different to yours. Wishing you well going forward πŸ‘

User
Posted 09 Aug 2022 at 20:49
You’re in charge remember. I told my Onco the regular testing was stressing me out and he said β€˜fine , let’s make it every 5 months β€˜ πŸ˜†
And that starts it’s own stress cycle haha. We settled on 4 months instead of 3
User
Posted 10 Aug 2022 at 08:52
Great news GG, so good to hear. Totally understand the anxiety surrounding these PSA tests, my nerves were in shreds. Keep well x
User
Posted 08 Dec 2022 at 17:54

Hi all, just a wee update on  my journey. This week I had my regular blood test. PSA is still undetectable. I will get tested again in March (one year on from surgery) then move to six-monthly tests. Very pleased I opted for surgery, so far, so good. (Dry, but still suffer ED, I have an Andrology appointment next week).
Wishing you all a Merry Christmas and a happy, heathy 2023.


GG

Edited by member 08 Dec 2022 at 17:56  | Reason: Not specified

User
Posted 08 Dec 2022 at 18:13

Amazing news fella. Great to see a good news story.

Edited by member 08 Dec 2022 at 21:38  | Reason: Not specified

User
Posted 08 Dec 2022 at 18:20
Nice one GG πŸ‘
User
Posted 08 Dec 2022 at 20:29
Great news GG and long may it continue. X
User
Posted 08 Dec 2022 at 20:48

GG, great news, long may it continue.


Thanks Chris 

User
Posted 08 Dec 2022 at 21:04

Great news GG, Big thanks for your QEUH detail. Was as you said.


 


Jamie

User
Posted 08 Dec 2022 at 21:09

Glad it went well Jamie, [Doctors name removed by moderator]


GG

Edited by moderator 08 Dec 2022 at 21:42  | Reason: Not specified

User
Posted 08 Dec 2022 at 23:17

Brilliant news GG.


Long may it continue.


Have a wonderful Christmas & New year x

Edited by member 08 Dec 2022 at 23:18  | Reason: Not specified

User
Posted 09 Dec 2022 at 12:44

Great news on your PSA GG. Wishing you all the best for Christmas and 2023.

Ido4

User
Posted 11 Apr 2023 at 16:02

Hi all - apologies, I haven’t been around much but have been trying to live life without cancer thoughts in my head.
however I thought I would check in to update on my progress. Just had my regular post PSA  call - still undetectable - a huge sigh of relief ! The waiting time between the blood test and the result is always tough, but I can put it out of mind for six months now and enjoy the summer.


I am still 99.9% continent and frequency is not as big an issue as it once was. The only downside is ED, still no stirrings. I now have a vacuum pump but struggle to use it (don’t seem able to get a seal ) - I’ll persist though. 


Best wishes to all. I hope my journey gives hope to others who are at an earlier stage in their diagnosis or treatment choices.


GG

User
Posted 11 Apr 2023 at 16:15
I now have a vacuum pump but struggle to use it (don’t seem able to get a seal ) - I’ll persist though

Have you tried the following:
- trim pubic hair as close as you can (but there is no need to shave)
- smear the lube around the end of the tube as well as the inside
- sit rather than stand until you have the knack
- pump for a few seconds, pause, pump, pause
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Apr 2023 at 17:02
Great technique description Lyn works every time for me...
User
Posted 11 Apr 2023 at 18:17

Great to hear from you GG and that your PSA is still undetectable.  Can’t offer any advice re the pump but I know after last conversation with surgeon he said can be up to 3 years before nerves heal (if at all). Best wishes x

User
Posted 11 Apr 2023 at 19:40

Lyn's description is perfect. Yep trim the pubic hair. 

User
Posted 11 Apr 2023 at 21:11

As good a news as we could hope for GG. Wishing you so much warmth.


Oh and. GG?


Between you and I...


How easy is it to love Lyn??


 


Jamie.

User
Posted 11 Apr 2023 at 22:34
Humph, you wouldn't think that if you met me in real life - I am pedantic, brutal and make people cry a lot. I have big boobs though and, if I speak at a conference, someone always comments on my beautiful shoes 🀣
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
Forum Jump  
<123>
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK