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To year 3 and beyond

User
Posted 21 May 2024 at 23:39

Hi all,

So recently I have entered year 3 since my prostectomy and figured id try and update this for anyone thats on a similar timeline or even for those at the infancy of their diagnosis. 

The 10th of May 2022 was a big day for me. I hadnt long turned 47 (2 weeks). My operation to have my prostate removed was scheduled for around lunchtime and naturally, I awoke around 6am with an erection I could have hung a wet Crombie coat from. There is a proper tragedy within there that I today still struggle with.

Anyway.

I am due my 6 monthly bloods in a few weeks. Im as ever, hopeful. dare I say confident? ( I know, weird huh?) Its maybe just my coping mechanism. Everything is good. Life has gone on and most days I plod along with a gratitude I reserve for people other than me. ( I have no idea if that makes sense, I hope it does.)

Firstly, Incontinence. No issues. I have been super fortunate to be continent immediately after the catheter removal. It has continued thus ever since. Happy days.

Potency. I had 80% nerve sparing. 3 of the 5 on my right hand bundle and my entire left bundle were spared. So where am I with that? Well to be honest, for the best part of a year, I had little or no activity going on there. Be prepared for that. I think it was around month 18 before he really started to begin his new life. I have given him much encouragement and today, 2 years on hes probably at around ten past three. A big difference from just after 1 o'cock back in May 22. I have read on here, I think from Lynn, that her husband had his biggest improvement in years 2 to 3. I live in hope. If im honest id be delighted at 2 o'cock. Half 2 might even be a dream. 

So given my positive, till now, histology and perhaps prognosis. Why is it that I continue to return to these pages to try and absorb others stories? Is it to remind myself how fortunate I am? I dont think so. Truth is I am not that fortunate. Im not am I? I, like everyone here, have been robbed of something. My father, now retired almost 20 years, was a DCI in what used to be called Strathclyde Police. He was a proper copper dealing with Glasgows worst of characters. He would never, ever talk work. However, when he retired and after draining the best of glasses with him, he told me some harrowing stuff. Without going into too much detail, he once attended the post mortem of a 7 year old girl that had been raped and murdered. Both he and his female colleague were physically sick and he has been haunted with it ever since. The guy who done it was just 19 years old. He told me that men, even the youngest of men, can be the most depraved , disgusting human beings. I get that. He also told me , that in his experience, women can also be bad. But almost always, behind every bad woman almost certainly has an even more bad man (Uncle, Brother,Father, ex BF etc)

It can make you feel a bit ashamed to be a man when you hear and aknowledge such stuff. 

But then I find myself on here. Through misfortune obviously. To be reminded that those men my dad speaks of arent actually real men. Nope. Real men reach out and support those that stand beside us. Men that are on here.

I love that.

I think I need that.

I sometimes try to imagine what it may be like if we were all to meet at some English pub in Yorkshire somewhere. 

A table of 46 or so that would undoubtedly be met with disdain from old Wilma and Mary at the table next to us.

Wilma: "Did you hear some of the conversation from that table next to us Mary?"

Mary: " Dreadful Wilma.. Erections, Orgasms, Pissing .."

Wilma: "I heard that too, they didnt seem to have any shame! Im sure I heard one of them talking about pumping their penis!!"

Mary: "Disgusting Wilma"

Wilma: " Do you think they work together Mary?"

Mary : " DJ's Wilma..DJ's.

Wilma: "DJ's?"

Mary: " Yes Wilma, DJ's.. I heard the word radio mentioned far too many times"

Thats us Mary... DJ's spinning our stories on the decks of life!

Sorry.. I digress.

Im hoping this will be my last update on this. If i suddenly relapse, i.e over a 0.1 then I will no doubt be on here right away seeking comfort and support. I hope not though.

Thank you all for reminding me what it takes to be a proper proper man.

May your battles be few and your health be true.

Laters DJ's

 

Jamie.

 

User
Posted 21 May 2024 at 23:39

Hi all,

So recently I have entered year 3 since my prostectomy and figured id try and update this for anyone thats on a similar timeline or even for those at the infancy of their diagnosis. 

The 10th of May 2022 was a big day for me. I hadnt long turned 47 (2 weeks). My operation to have my prostate removed was scheduled for around lunchtime and naturally, I awoke around 6am with an erection I could have hung a wet Crombie coat from. There is a proper tragedy within there that I today still struggle with.

Anyway.

I am due my 6 monthly bloods in a few weeks. Im as ever, hopeful. dare I say confident? ( I know, weird huh?) Its maybe just my coping mechanism. Everything is good. Life has gone on and most days I plod along with a gratitude I reserve for people other than me. ( I have no idea if that makes sense, I hope it does.)

Firstly, Incontinence. No issues. I have been super fortunate to be continent immediately after the catheter removal. It has continued thus ever since. Happy days.

Potency. I had 80% nerve sparing. 3 of the 5 on my right hand bundle and my entire left bundle were spared. So where am I with that? Well to be honest, for the best part of a year, I had little or no activity going on there. Be prepared for that. I think it was around month 18 before he really started to begin his new life. I have given him much encouragement and today, 2 years on hes probably at around ten past three. A big difference from just after 1 o'cock back in May 22. I have read on here, I think from Lynn, that her husband had his biggest improvement in years 2 to 3. I live in hope. If im honest id be delighted at 2 o'cock. Half 2 might even be a dream. 

So given my positive, till now, histology and perhaps prognosis. Why is it that I continue to return to these pages to try and absorb others stories? Is it to remind myself how fortunate I am? I dont think so. Truth is I am not that fortunate. Im not am I? I, like everyone here, have been robbed of something. My father, now retired almost 20 years, was a DCI in what used to be called Strathclyde Police. He was a proper copper dealing with Glasgows worst of characters. He would never, ever talk work. However, when he retired and after draining the best of glasses with him, he told me some harrowing stuff. Without going into too much detail, he once attended the post mortem of a 7 year old girl that had been raped and murdered. Both he and his female colleague were physically sick and he has been haunted with it ever since. The guy who done it was just 19 years old. He told me that men, even the youngest of men, can be the most depraved , disgusting human beings. I get that. He also told me , that in his experience, women can also be bad. But almost always, behind every bad woman almost certainly has an even more bad man (Uncle, Brother,Father, ex BF etc)

It can make you feel a bit ashamed to be a man when you hear and aknowledge such stuff. 

But then I find myself on here. Through misfortune obviously. To be reminded that those men my dad speaks of arent actually real men. Nope. Real men reach out and support those that stand beside us. Men that are on here.

I love that.

I think I need that.

I sometimes try to imagine what it may be like if we were all to meet at some English pub in Yorkshire somewhere. 

A table of 46 or so that would undoubtedly be met with disdain from old Wilma and Mary at the table next to us.

Wilma: "Did you hear some of the conversation from that table next to us Mary?"

Mary: " Dreadful Wilma.. Erections, Orgasms, Pissing .."

Wilma: "I heard that too, they didnt seem to have any shame! Im sure I heard one of them talking about pumping their penis!!"

Mary: "Disgusting Wilma"

Wilma: " Do you think they work together Mary?"

Mary : " DJ's Wilma..DJ's.

Wilma: "DJ's?"

Mary: " Yes Wilma, DJ's.. I heard the word radio mentioned far too many times"

Thats us Mary... DJ's spinning our stories on the decks of life!

Sorry.. I digress.

Im hoping this will be my last update on this. If i suddenly relapse, i.e over a 0.1 then I will no doubt be on here right away seeking comfort and support. I hope not though.

Thank you all for reminding me what it takes to be a proper proper man.

May your battles be few and your health be true.

Laters DJ's

 

Jamie.

 

User
Posted 22 May 2024 at 07:49

Hi Jamie, 

Great update! I saw quite a lot of improvement in years 2-3 so hopefully you will too.

A few months ago I was talking to a lady at a support group meeting. She told me a story about when they first started their group, which would often be held in a back garden. As it was summer, all the windows were open and the neighbours were treated to conversations about erectile dysfunction and incontinence. Apparently the neighbours had to field awkward questions from their kids. The support group meets at a hall now. 

Cheers, 

Kev.

User
Posted 22 May 2024 at 09:44

Originally Posted by: Online Community Member
 My father, now retired almost 20 years, was a DCI in what used to be called Strathclyde Police. 

I sometimes try to imagine what it may be like if we were all to meet at some English pub in Yorkshire somewhere. 

Morning mate.

Thanks very much for your update. I'm about 9 months behind you. I've always enjoyed your posts, your outlook on life and your sense of humour.

Your dad, as a DCI in Glasgow in that era, certainly would have dealt with many horrendous incidents. You should be very proud of him.

I'm ex-police never got promoted, never wanted to. However, I was in uniform, front line policing, for thirty years. Like your dad I retired 20 years ago. In those days the police were much more respected. Like your dad, I saw and dealt with many tragedies, like he says those involving children were always the worst. I do believe that having to deal with those experiences has helped me deal with dilemmas in my own life. I've noticed there are a few ex coppers and fireman on here.

As for your idea of meeting in a pub, it was the reason I thought we needed an area on this site to have a chat about life in general, as you would in a pub. That's why we started a conversation to do just that.

https://community.prostatecanceruk.org/posts/t30284-A-place-to-have-a-chat

Best of luck to you Jamie. Please don't stop posting mate, keep us updated even if its just once a year.

Edited by member 22 May 2024 at 18:03  | Reason: Additional text

User
Posted 22 May 2024 at 10:32

Great post Jamie. Thank you. I am 2.5 years post op. (Nov 2021) and my PSA has gradually increased to a reading of 0.1 in January. Next test in 10 days and I must confess that I am a little anxious  I am much older than you and consider myself fortunate (given the cards I have been dealt) to be acceptably continent. That means some days totally dry and others just an occasional drip, depending on activity. I feel that I have been much more in control since passing the two year mark. Little Peter is dead as a dodo but at my age that is not a great concern to me now. He had a good life and I don't feel like stabbing him with needles, or  encasing him in a vacuum chamber  to make him stand to attention. Tried tadalifil (made me sick) and sildenifil (wife doesn't like planning an event) and now feel mightily relaxed just enjoying life as it is. My father passed away when he was 61. I am now 76 and consider every day a bonus. 

Peter

 

User
Posted 22 May 2024 at 16:48

Jamie, Just like you it is exactly 2yrs since my surgery. Natural erections (sufficient enough) is still yet to return, incontinence, though completely dry when I am awake no need for pads, bedtime (or even daytime when napping) is another issue entirely. I can only describe it as bedwetting. It is the incontinence that is driving me up the wall! I am thankful that PSA results have continued to be favourable, just incontinence and ED.

I wish you all the best going forward and hope there will be good news to report in the coming months.

User
Posted 22 May 2024 at 17:39

Thank you Kev. The hall does sound so much better to be fair.You can just imagine those conversations said aloud huh?.. Ive followed your path so far my man and take huge encouragement from your improvement from year 2.

Love and warmth mate.

 

Jamie.

Edited by member 22 May 2024 at 20:31  | Reason: Not specified

User
Posted 22 May 2024 at 17:48

Peter,

Genuinely love that attitude of yours. At 76? You're still but a pup 😉

 

Jamie.

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User
Posted 22 May 2024 at 07:49

Hi Jamie, 

Great update! I saw quite a lot of improvement in years 2-3 so hopefully you will too.

A few months ago I was talking to a lady at a support group meeting. She told me a story about when they first started their group, which would often be held in a back garden. As it was summer, all the windows were open and the neighbours were treated to conversations about erectile dysfunction and incontinence. Apparently the neighbours had to field awkward questions from their kids. The support group meets at a hall now. 

Cheers, 

Kev.

User
Posted 22 May 2024 at 09:44

Originally Posted by: Online Community Member
 My father, now retired almost 20 years, was a DCI in what used to be called Strathclyde Police. 

I sometimes try to imagine what it may be like if we were all to meet at some English pub in Yorkshire somewhere. 

Morning mate.

Thanks very much for your update. I'm about 9 months behind you. I've always enjoyed your posts, your outlook on life and your sense of humour.

Your dad, as a DCI in Glasgow in that era, certainly would have dealt with many horrendous incidents. You should be very proud of him.

I'm ex-police never got promoted, never wanted to. However, I was in uniform, front line policing, for thirty years. Like your dad I retired 20 years ago. In those days the police were much more respected. Like your dad, I saw and dealt with many tragedies, like he says those involving children were always the worst. I do believe that having to deal with those experiences has helped me deal with dilemmas in my own life. I've noticed there are a few ex coppers and fireman on here.

As for your idea of meeting in a pub, it was the reason I thought we needed an area on this site to have a chat about life in general, as you would in a pub. That's why we started a conversation to do just that.

https://community.prostatecanceruk.org/posts/t30284-A-place-to-have-a-chat

Best of luck to you Jamie. Please don't stop posting mate, keep us updated even if its just once a year.

Edited by member 22 May 2024 at 18:03  | Reason: Additional text

User
Posted 22 May 2024 at 10:32

Great post Jamie. Thank you. I am 2.5 years post op. (Nov 2021) and my PSA has gradually increased to a reading of 0.1 in January. Next test in 10 days and I must confess that I am a little anxious  I am much older than you and consider myself fortunate (given the cards I have been dealt) to be acceptably continent. That means some days totally dry and others just an occasional drip, depending on activity. I feel that I have been much more in control since passing the two year mark. Little Peter is dead as a dodo but at my age that is not a great concern to me now. He had a good life and I don't feel like stabbing him with needles, or  encasing him in a vacuum chamber  to make him stand to attention. Tried tadalifil (made me sick) and sildenifil (wife doesn't like planning an event) and now feel mightily relaxed just enjoying life as it is. My father passed away when he was 61. I am now 76 and consider every day a bonus. 

Peter

 

User
Posted 22 May 2024 at 16:48

Jamie, Just like you it is exactly 2yrs since my surgery. Natural erections (sufficient enough) is still yet to return, incontinence, though completely dry when I am awake no need for pads, bedtime (or even daytime when napping) is another issue entirely. I can only describe it as bedwetting. It is the incontinence that is driving me up the wall! I am thankful that PSA results have continued to be favourable, just incontinence and ED.

I wish you all the best going forward and hope there will be good news to report in the coming months.

User
Posted 22 May 2024 at 17:39

Thank you Kev. The hall does sound so much better to be fair.You can just imagine those conversations said aloud huh?.. Ive followed your path so far my man and take huge encouragement from your improvement from year 2.

Love and warmth mate.

 

Jamie.

Edited by member 22 May 2024 at 20:31  | Reason: Not specified

User
Posted 22 May 2024 at 17:45

Adrian,

This is such a touching reply and illustrates perfectly what I think I was trying to convey. You and my Dad are clearly made of the same cloth and Im certain you could both, as the Heraclitus poem says, "tire the sun with talking and send him down the sky"

Thank you brother.

 

Jamie.

User
Posted 22 May 2024 at 17:48

Peter,

Genuinely love that attitude of yours. At 76? You're still but a pup 😉

 

Jamie.

User
Posted 22 May 2024 at 17:52

Gee B?

All too aware we share a similar timeline. Have followed your path with interest. Im sure the incontinence will surely improve in the not so distant my man. You'll get there comrade.🤞

 

Jamie.

 
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