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User
Posted 23 May 2025 at 01:30

Topic is now closed.

Edited by member 28 May 2025 at 23:15  | Reason: warranted

User
Posted 23 May 2025 at 11:11

Hi jfd.


I like bluntness, it's a waste of time beating around the bush. 


Most of what you deem as inappropriate topics for discussion are contained within a conversation that I started over a year ago.


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


Before I started the thread I sought approval from the administrators of this site. They thought it was a good idea.


If you read the opening post you'll see the rationale for starting it. The conservation has generally been well received. I've had numerous messages of thanks from those who've found it beneficial whilst dealing with PCa.


I respect your opinion, mate, but find it hard to accept criticism from someone whose profile is limited and whose posting history has contributed to so little to the site.


 

Edited by member 23 May 2025 at 11:20  | Reason: Spelling

User
Posted 23 May 2025 at 23:56

Originally Posted by: Online Community Member
I read many of Lyn’s posts as she was a prolific contributor to this site. On the whole the info she provided  was correct but not always. The last time she ever posted, was a post that was inaccurate and she was challenged by a chap who was an oncologist. She never posted again. I don’t know if the two things were linked. In a way this shows how when an expert does comment on this site it can be so useful and stop misinformation. 


I remember the disagreement well, it was about margins. But noone not even medically trained experts are always right.


This forum is full of stories of clinicians mistakes. I think Lyn deserved a medal for all the effort she put into helping others. Where is the oncologist now? Who's he helping on this site now? I recall, he visited to learn about incontinence pants and during is couple of months stay may have got rid of our greatest asset. 


There are few on here that give good advice, including yourself, but can you guarantee that everything you post is 100% accurate?


As someone earlier said this forum isn't purely about sharing clinical information, it's about people supporting others with prostate cancer. It's about showing a bit of compassion and empathy to those who are obviously struggling with the disease. This support can be giving links to peer reviewed research, sharing experiences, making someone who's feeling sad smile or having a general natter about how your coping with life in general. That includes where they going on holiday, what are they doing at the weekend and how did their football team get on.


None are more important than the other.


I found the jfd's comment that my contribution to this forum, is to make me and my target audience feel warm and fuzzy, offensive and condescending. 


Anyway, I'll still be here next week, next month, and next year to do my best to support others. We'll see if jfd or him in any other form, is here to do the same.


He set out to ruffle feathers. He could end up in a cockfight. πŸ™‚


 

Edited by member 24 May 2025 at 00:08  | Reason: Typo

User
Posted 24 May 2025 at 00:30

You off mate? No apology?


If you return yet again, please use the same username. It makes life so much easier. 


Our pub will be open, the beer will be flowing, but some of us are fussy who we drink with.


Goodnight.


 

Edited by member 24 May 2025 at 00:32  | Reason: Typo

User
Posted 23 May 2025 at 11:25
Jtd ,I echo what Adrian has said . A lot of people come to the site to hear others stories and find comfort in that . Maybe you could start a thread detailing your experience and in turn that may help others .
Best wishes
Debby
User
Posted 23 May 2025 at 13:14

Just thought I'd chuck in my view point having joined (in a somewhat panicked state) July last year. I had viewed for a few months prior too.


I'd say there is space for chit chat and the serious stuff. The search facility can provide you with the info you're after. That's what I did initially, searching for the things that were worrying me or I wanted answers for.


Having then joined I could ask the questions I could find anything on.


A year on I'm a lot happier, this forum playing a big part. I like reading the chit chat now too, though not really taken part in any, maybe I need to get out more...maybe have a pint ;)


 

User
Posted 23 May 2025 at 13:20

Originally Posted by: Online Community Member
 Whilst the social chit chat might make you and the target feel all warm and fuzzy, sadly it has no clinical significance in medicine whatsoever and that is my point.


Apart from you, and an oncologist who popped in here for a couple of weeks, a year ago. I don't belief there is anyone on the forum medically qualified to make significant clinical or medical comment.


If a general chat on one thread on this forum makes those struggling with the disease feel warm and fuzzy, it's served its purpose.


Anyway, pop in the 'virtual pub' and have a schooner. There's loads of nice folk in there who'd love to get help from someone whose been an ex medical professional. Your in box will soon be overflowing with those seeking your expertise. Perhaps, that's why you had to keep changing usernames?


Cheers, mate.🍻


 


 

Edited by member 23 May 2025 at 14:13  | Reason: Typo

User
Posted 24 May 2025 at 08:51

Originally Posted by: Online Community Member
Do they serve wine in the virtual pub ! Asking for a friend πŸ˜‚


The beauty of our virtual pub, is we sell everything, it never runs out, and doesn't cost a penny. We're open 24 hours a day, 7 days a week. There's also a play area for kids and grandkids


The only downside is the Gents is a bit manky. It appears most of our clientèle have problems hitting the urinal and the condom machine is used so infrequently that it has started to rust. The Tena vending machine, on the other hand, is wearing out and will soon need replacing. Unfortunately, the pad disposal bin is often overflowing.


Despite this we have maintained our 4.5 stars rating on trip advisor.

Edited by member 24 May 2025 at 09:25  | Reason: Additional text

User
Posted 24 May 2025 at 19:12

Hi jfd


I was aghast to read .........'Whilst the social chit chat might make you and the target feel all warm and fuzzy, sadly it has no clinical significance in medicine whatsoever and that is my point..'


As a medical professional surely you realise, the importance of the psychological and indeed positive medical outcomes for patient as a result of contacts with other human beings, talking to people, be mentally active, talk about common interests (like football etc) because a great deal of healing takes place in the mind. This is why modern hospitals try and provide a friendly environment. and opportunities for patients to interact. Of course placebo effects are a well established medical phenomena.


For men and their wives/partners it is very useful to read about how other men and couples deal with the issues like ED, incontinence, lack of libido etc. In my experience the medical profession, particularly the consultants, once they have performed the basic task like surgery, they don't provide any follow up support. This forum does just that, the chit chat thread as you call it, allows us to let our hair down and say what we want to, provided, of course, it does not offend anyone. 


 

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate


 


 

User
Posted 23 May 2025 at 15:32

I've not searched out all the issues you cite, but the travel insurance specifically related to someone well through treatments for metastatic disease, and is a specific problem for that cohort of patient, so very relevant.


You have the choice to either skip the threads which are not of interest (which is what I do), or find another forum to use. There are many forums, albeit fewer if you just restrict to UK-relevant ones. This one covers medical issues better than any of the others I know - no clinicians (who are open about it anyway), but many expert patients to help and to debunk any inaccurate information posted (which happens quite rarely in any case).

User
Posted 23 May 2025 at 14:16

A curious post jfd but given you're "a long since retired health professional" maybe you can help with qualified advice?


As for the chit chat, there's unlimited space here and anything that can help with the mental side of this affliction has to be a good thing. Coming to grips with an existential threat like prostate cancer goes well beyond the purely clinical.


You appear to have come back here with recurrence. I'm sorry to hear about that but maybe that's close to the crux of your post?


Jules


 


 

User
Posted 23 May 2025 at 14:45

Adrian, keep the pub open, it is a very useful place, if I want clinical advice I will ask my oncology nurse, consultants or GP, well perhaps not the GP. I hope over the years I have helped at least one person by sharing my experience and I know I have benefited from hearing the experience of my peers. 


The dynamics of this forum has changed in the last ten years and the stalwarts did an excellent job of keeping it accurate. I use others forums and cringe at some of the poor information and comments given.


Thanks Chris 

User
Posted 23 May 2025 at 22:02

I read many of Lyn’s posts as she was a prolific contributor to this site. On the whole the info she provided  was correct but not always. The last time she ever posted, was a post that was inaccurate and she was challenged by a chap who was an oncologist. She never posted again. I don’t know if the two things were linked. In a way this shows how when an expert does comment on this site it can be so useful and stop misinformation. 
Most people post from their own experience and that is great providing that caveat is made. It is fine to talk in generalities but it can be risky to talk on things sourced on Google unless an expert. 
I think a jokey thread is fine but I primarily look to this forum to hear about other people’s experiences, their approach to the disease, their treatment path and options. It is also heart warming to see how members support others as they start their journey.

User
Posted 24 May 2025 at 06:56

Originally Posted by: Online Community Member
To me Lyn was the epitome of what this forum should be, she was very knowledgeable and wise. She was also very witty, with a wicked sense of humour, and loved a bit of light hearted banter.


Lyn for a sainthood I'd say, though it was amazing how many times she was attacked for one reason or another. It was more amazing that she always handled it with grace. Interesting that jfd chose to sling off at her as part of his comment. I noticed that it was almost always true that when people attacked Lyn it was when they were having trouble coming to terms with their own cancer and chose her to unload on, just before they left the forum.


Anyway, thanks for your posts Adrian and may you continue to be irreverent and inappropriate on a regular basis. Your own empathy always shows through.


Jules

Edited by member 24 May 2025 at 07:34  | Reason: To remove a stream of shocking swear words and invective.

User
Posted 24 May 2025 at 07:57
Do they serve wine in the virtual pub ! Asking for a friend πŸ˜‚
User
Posted 24 May 2025 at 14:55

I'm not sure the OP is entirely correct in his memory of this forum being only dry topics.


https://community.prostatecanceruk.org/default.aspx?g=posts&m=109217#post109217


Anyway I often pop in Adrian's pub. There aren't many pubs you can pop in with a tenner get a round in and walk out with a tenner.

Dave

User
Posted 24 May 2025 at 17:58

Originally Posted by: Online Community Member
Well well 


This has certainly opened a can of worms.


Yes i chit chat but I also try to give advise to people who have just been diagnosed the best I can


Hi Phil.


That's why you have earned my total respect. I don't think I'd  be man enough to be going through what you are and still find the time to help others. 


There are several others on here like you. I could name them but don't what to embarrass them. However, included amongst them is one who supports Spurs, one is a school teacher, one had a border collie and one is a younger fella who rides motorbikes.  I've said it before, and l'll say it again, in my opinion  you are all heros.

Edited by member 24 May 2025 at 18:09  | Reason: Additional text

User
Posted 24 May 2025 at 23:09
Does this pub have a cock ring machine in the gents? Asking for a friend!
User
Posted 28 May 2025 at 15:49

Reply to jfd.


Have you heard of the Cambridge Footlights or Oxford Revue.


Full of very funny and very well educated folk. You don't seem to realise that comedy and intelligence are not mutually exclusive.


We'll have all the nonsense we want. 


I see you've deleted some of your previous posts, even the opening post! How 'funny' is that? 🫀


In one of your 'self deletions ' you mentioned you've left and returned here many times under different names. I'm beginning to see why. You've probably had more comebacks than Frank Sinatra and more names than The Artist formerly known as Prince.


You also said in another deleted message of yours, that you "refused to converse with the beer swiller. (me)"  That suits me, I'm very fussy who I drink with.


However, despite our bit of a spat, I'm sorry to hear, like most of us, that you have prostate cancer and wish you well.

Edited by member 28 May 2025 at 17:23  | Reason: Additional text

User
Posted 29 May 2025 at 16:36

All I can say to you guys is keep the flag flying.. You guys have been an immense source of inspiration, Ady, Andy62, etc you have all been very consistent and helped me in my darkest hour! Do not let anyone get you down. I am indeed very grateful and I am sure so are a lot of men (and women) on this forum.

User
Posted 23 May 2025 at 19:19

Originally Posted by: Online Community Member
I don't contribute to that thread but now and then I read it and can see the funny side. My wife read some of it once - over my shoulder - and thinks some of the comments are in poor taste, but then she does not have to read it.


Hello mate.


You do post in the virtual pub. You were in there only two nights ago. You said, "I normally don't post here but I always read what you guys write, cheers me up!" You must have had one too many and forgot.πŸ™‚


I remember my wife looking over my shoulder, when I was reading your sex thread. She thought it was a chapter from Fifty shades of Grey! She found it that steamy that I had to dash to the fridge for a phial of Invicorp. 😁


By the way, it wasn't the suitability of the pub thread that you challenged. It was one of my most 'irreverent' threads, 'The most appropriate background music during a digit rectal examination' Do you remember it? The Bee Gees 'How deep is your glove' won it.


I must also clarify that I have no pact with PCUK management. I merely sent a feedback email  proposing that we needed 'A place to chat' and was told that it was a good idea. If anyone thinks that the place is inappropriate, they can always report it.


When the thread was first opened, the most  valued and greatest stalwart of this forum, LynEyre, was in favour of it. Lyn had been here for 15 years and had 15,000 posts. She said during that time similar, more light hearted threads, some including quizzes, had come and gone. She'd contributed to them all. Her opinion was the most important factor to me proceeding with the idea. To me Lyn was the epitome of what this forum should be, she was very knowledgeable and wise. She was also very witty, with a wicked sense of humour, and loved a bit of light hearted banter. Although she didn't drink she used to pop in the virtual pub for a cuppa and a fag. If it was good enough for Lyn, it's good enough for me.


 

Edited by member 23 May 2025 at 20:25  | Reason: Typo

User
Posted 24 May 2025 at 09:53
Isn't this forum a support mechanism for dealing with Prostate cancer?
I don't visit as much as I did in the dark days of 2018 when I contracted the disease but when I do I look at recent posts and scroll down to read anything that interests me.
It takes a few seconds, it's called a choice whether or not I choose to read the thread. I wouldn't dream of berating anyone who posts topics I've little interest in.
I've got a lot out of this forum over the years both physically, and particularly during those early dark months, mentally.
Guy who wrote the opening post is out of order IMHO but we're all entitled to an opinion even if we agree to disagree.
Keep on trucking brothers.
User
Posted 24 May 2025 at 13:35

Ah thanks for that Adrian I remember the conversation now but didn’t follow it. So you are saying he more or less vanished after that post. What a great shame if that was the reason Lyn stopped posting but I can understand it, I thought at the time that he was out of order & I felt uncomfortable myself the way the conversation was going. 
My apologies once again to Andy for mixing him up with the other guy.

User
Posted 24 May 2025 at 17:06

Hi IDK2 


I don't blame the 'oncologist', he was right. There are no interior or exterior margins. He was a decent bloke.


In the past, I've queried a couple of Lyn's comments.  I've recently queried comments of another of our best non professional contributors. 


People have challenged my interpretation of research and I've apologised when I was wrong. One of them may have been you? I think I've challenged one of your posts? That's what forums are about. One thing is for sure, noone is always right, professional or non professional. 


During my treatment I've challenged consultants opinions and eventually they conceded I was right. I had to threaten legal action and involve the PHSO to twist their arm, but eventually they admitted their mistakes. 


When Lyn used to post, people asked for her help. She was trusted more than most consultants. She wasn't 100% correct but neither is any consultant. However, far too frequently they think they are, and have a supercilious attitude.


I'd take more notice of our professional visitors if they'd, from post one, tell us that they are professional experts, rather than them later dramatically announcing it. 


Lyn spent and many others on this site spend hundreds of hours of their own time to help others who are struggling with this disease. I value their contribution far more than I do 'professionals' who swan in for a couple of hours, cause a little disruption. Then leave, never to be seen again.

Edited by member 24 May 2025 at 21:00  | Reason: Reduce text

User
Posted 25 May 2025 at 07:31

Therein lies a danger too and that is AI. I find AI can quite frequently be incorrect. It tends to make statements and when you click on the statement it takes you to the link for the  source  and it has been taken out of context. I have not looked at this AI example.


As lay people I think it is reasonable to say positive margins increase risk of BCR. That is a fact that almost any research paper will confirm. There are also reports that suggest positive margins increase risk when present in certain areas, apical margin for instance carries less risk of BCR and then there are other research papers that dismiss this notion.  In the example you have given it basically concludes positive margins increase risk of BCR. 


Many people on this site are understandably desperately seeking info, particularly in the early days of their diagnosis and as a community we should try to share personal experience and trusted information but using Google to fill the gaps even when well intentioned is in my opinion can be misleading. I know in this instance Adrian that is not the purpose of your earlier post. All of us who have been down the Google hole know for every paper stating one thing there is often another paper saying the opposite!


Finally it is nonsense to suggest you can’t have jovial threads and if people choose to post to those threads that in itself shows the benefit of them. Losing your prostate does not mean you have to lose your humour.

Edited by member 25 May 2025 at 07:59  | Reason: Not specified

User
Posted 25 May 2025 at 21:01

Hi


I am a relative newbie to the site ,I find it really useful.I haven’t posted in the “Place to have a chat” yet but have read some of the stories and can understand how people enjoy posting in there ,in my humble opinion it does no harm and a lot of good πŸ‘In my own case I have contributed in areas that are significant to me at the moment ,ED and incontinence.I have found a lot of useful information,as my knowledge and experience improves I like to share the little bits of knowledge I have already gained.There are a lot of people who take the time and trouble to comment and share their knowledge and experience which I guess is what it’s all about.Adrian At a time when many Pubs are closing yours seems to be thriving  πŸ‘

User
Posted 30 May 2025 at 08:05

Hi all, not been in for a while due to various life changing events....decorating the bedroom, which led to having a heat pump fitted, which led to a sewage leak on a biblical scale that involved two whole streets of drains backing up to my house, which led to.... well these things escalate don't they?


I've just scanned through this thread and reading between the lines I take it someone has taken exception to the virtual pub. 


I first visited this site when I was told I had a raised PSA and needed biopsies etc etc. 


I was looking for information to help me navigate the new landscape I found myself in. A scary place with a new language, place names I couldn't read and very little help from the locals, kind of like visiting Wales. 


I found all of that in spades. But I also found a group of friends, all in the same boat. I found a place I could ask or talk about anything and everything, express my fears, share my worries and learn from folk who were a lot further on in the journey than me.


The virtual pub is a great idea, I don't have a local, I don't even drink much, but I do think that Adrian's idea is bang on target for this site. I can't understand why the OP would criticise it's formation or use. We all use dark humour in our darkest moments and if it doesn't appeal to you then don't get involved,  simples.


As for the accuracy of information posted, find me any single piece of medical opinion that is 100% sure and I will be impressed. Christ I wouldn't go to my oncologist and say " Hey chum, a bloke down the pub says my margins are all wrong and you need to do another test"


Adrian, you are an inspiration and a friend to many. Keep it up pal and nil carborundum etc etc.


Does the pub have a proper name yet other than virtual pub?  Could be a giggle to come up with a suitable name...


Just popping down to the oncologists finger darling....


Mick 


 


 

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User
Posted 23 May 2025 at 11:11

Hi jfd.


I like bluntness, it's a waste of time beating around the bush. 


Most of what you deem as inappropriate topics for discussion are contained within a conversation that I started over a year ago.


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


Before I started the thread I sought approval from the administrators of this site. They thought it was a good idea.


If you read the opening post you'll see the rationale for starting it. The conservation has generally been well received. I've had numerous messages of thanks from those who've found it beneficial whilst dealing with PCa.


I respect your opinion, mate, but find it hard to accept criticism from someone whose profile is limited and whose posting history has contributed to so little to the site.


 

Edited by member 23 May 2025 at 11:20  | Reason: Spelling

User
Posted 23 May 2025 at 11:25
Jtd ,I echo what Adrian has said . A lot of people come to the site to hear others stories and find comfort in that . Maybe you could start a thread detailing your experience and in turn that may help others .
Best wishes
Debby
User
Posted 23 May 2025 at 12:38

deleted


 


 


 


  

Edited by member 27 May 2025 at 01:08  | Reason: nonsense

User
Posted 23 May 2025 at 13:14

Just thought I'd chuck in my view point having joined (in a somewhat panicked state) July last year. I had viewed for a few months prior too.


I'd say there is space for chit chat and the serious stuff. The search facility can provide you with the info you're after. That's what I did initially, searching for the things that were worrying me or I wanted answers for.


Having then joined I could ask the questions I could find anything on.


A year on I'm a lot happier, this forum playing a big part. I like reading the chit chat now too, though not really taken part in any, maybe I need to get out more...maybe have a pint ;)


 

User
Posted 23 May 2025 at 13:20

Originally Posted by: Online Community Member
 Whilst the social chit chat might make you and the target feel all warm and fuzzy, sadly it has no clinical significance in medicine whatsoever and that is my point.


Apart from you, and an oncologist who popped in here for a couple of weeks, a year ago. I don't belief there is anyone on the forum medically qualified to make significant clinical or medical comment.


If a general chat on one thread on this forum makes those struggling with the disease feel warm and fuzzy, it's served its purpose.


Anyway, pop in the 'virtual pub' and have a schooner. There's loads of nice folk in there who'd love to get help from someone whose been an ex medical professional. Your in box will soon be overflowing with those seeking your expertise. Perhaps, that's why you had to keep changing usernames?


Cheers, mate.🍻


 


 

Edited by member 23 May 2025 at 14:13  | Reason: Typo

User
Posted 23 May 2025 at 13:45

Hi jfd


I think I know how you feel. When Adrian started the thread I think I had made a similar comment but then once it got going I realised that it was serving a particular need for some members. Adrian and the PCUK management seem to have a clear policy on it and I think that is fine. 


We all cope differently with this catastrophe in our lives. Some like humour but others think what is written is in bad taste. I fall somewhere in between! But I have a choice: I don't have to go there.


I don't contribute to that thread but now and then I read it and can see the funny side. My wife read some of it once - over my shoulder - and thinks some of the comments are in poor taste, but then she does not have to read it.


I hope you continue  to take part  in this forum both to benefit from other men's experiences and contribute to help others in the future. I am one of the survivors (so far), following RARP 14 years ago, and I have learnt a lot here and also hope I have helped others by writing about our experience as we have travelled the tough path.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate


 


 

User
Posted 23 May 2025 at 14:16

A curious post jfd but given you're "a long since retired health professional" maybe you can help with qualified advice?


As for the chit chat, there's unlimited space here and anything that can help with the mental side of this affliction has to be a good thing. Coming to grips with an existential threat like prostate cancer goes well beyond the purely clinical.


You appear to have come back here with recurrence. I'm sorry to hear about that but maybe that's close to the crux of your post?


Jules


 


 

User
Posted 23 May 2025 at 14:45

Adrian, keep the pub open, it is a very useful place, if I want clinical advice I will ask my oncology nurse, consultants or GP, well perhaps not the GP. I hope over the years I have helped at least one person by sharing my experience and I know I have benefited from hearing the experience of my peers. 


The dynamics of this forum has changed in the last ten years and the stalwarts did an excellent job of keeping it accurate. I use others forums and cringe at some of the poor information and comments given.


Thanks Chris 

User
Posted 23 May 2025 at 15:32

I've not searched out all the issues you cite, but the travel insurance specifically related to someone well through treatments for metastatic disease, and is a specific problem for that cohort of patient, so very relevant.


You have the choice to either skip the threads which are not of interest (which is what I do), or find another forum to use. There are many forums, albeit fewer if you just restrict to UK-relevant ones. This one covers medical issues better than any of the others I know - no clinicians (who are open about it anyway), but many expert patients to help and to debunk any inaccurate information posted (which happens quite rarely in any case).

User
Posted 23 May 2025 at 19:19

Originally Posted by: Online Community Member
I don't contribute to that thread but now and then I read it and can see the funny side. My wife read some of it once - over my shoulder - and thinks some of the comments are in poor taste, but then she does not have to read it.


Hello mate.


You do post in the virtual pub. You were in there only two nights ago. You said, "I normally don't post here but I always read what you guys write, cheers me up!" You must have had one too many and forgot.πŸ™‚


I remember my wife looking over my shoulder, when I was reading your sex thread. She thought it was a chapter from Fifty shades of Grey! She found it that steamy that I had to dash to the fridge for a phial of Invicorp. 😁


By the way, it wasn't the suitability of the pub thread that you challenged. It was one of my most 'irreverent' threads, 'The most appropriate background music during a digit rectal examination' Do you remember it? The Bee Gees 'How deep is your glove' won it.


I must also clarify that I have no pact with PCUK management. I merely sent a feedback email  proposing that we needed 'A place to chat' and was told that it was a good idea. If anyone thinks that the place is inappropriate, they can always report it.


When the thread was first opened, the most  valued and greatest stalwart of this forum, LynEyre, was in favour of it. Lyn had been here for 15 years and had 15,000 posts. She said during that time similar, more light hearted threads, some including quizzes, had come and gone. She'd contributed to them all. Her opinion was the most important factor to me proceeding with the idea. To me Lyn was the epitome of what this forum should be, she was very knowledgeable and wise. She was also very witty, with a wicked sense of humour, and loved a bit of light hearted banter. Although she didn't drink she used to pop in the virtual pub for a cuppa and a fag. If it was good enough for Lyn, it's good enough for me.


 

Edited by member 23 May 2025 at 20:25  | Reason: Typo

User
Posted 23 May 2025 at 22:02

I read many of Lyn’s posts as she was a prolific contributor to this site. On the whole the info she provided  was correct but not always. The last time she ever posted, was a post that was inaccurate and she was challenged by a chap who was an oncologist. She never posted again. I don’t know if the two things were linked. In a way this shows how when an expert does comment on this site it can be so useful and stop misinformation. 
Most people post from their own experience and that is great providing that caveat is made. It is fine to talk in generalities but it can be risky to talk on things sourced on Google unless an expert. 
I think a jokey thread is fine but I primarily look to this forum to hear about other people’s experiences, their approach to the disease, their treatment path and options. It is also heart warming to see how members support others as they start their journey.

User
Posted 23 May 2025 at 23:56

Originally Posted by: Online Community Member
I read many of Lyn’s posts as she was a prolific contributor to this site. On the whole the info she provided  was correct but not always. The last time she ever posted, was a post that was inaccurate and she was challenged by a chap who was an oncologist. She never posted again. I don’t know if the two things were linked. In a way this shows how when an expert does comment on this site it can be so useful and stop misinformation. 


I remember the disagreement well, it was about margins. But noone not even medically trained experts are always right.


This forum is full of stories of clinicians mistakes. I think Lyn deserved a medal for all the effort she put into helping others. Where is the oncologist now? Who's he helping on this site now? I recall, he visited to learn about incontinence pants and during is couple of months stay may have got rid of our greatest asset. 


There are few on here that give good advice, including yourself, but can you guarantee that everything you post is 100% accurate?


As someone earlier said this forum isn't purely about sharing clinical information, it's about people supporting others with prostate cancer. It's about showing a bit of compassion and empathy to those who are obviously struggling with the disease. This support can be giving links to peer reviewed research, sharing experiences, making someone who's feeling sad smile or having a general natter about how your coping with life in general. That includes where they going on holiday, what are they doing at the weekend and how did their football team get on.


None are more important than the other.


I found the jfd's comment that my contribution to this forum, is to make me and my target audience feel warm and fuzzy, offensive and condescending. 


Anyway, I'll still be here next week, next month, and next year to do my best to support others. We'll see if jfd or him in any other form, is here to do the same.


He set out to ruffle feathers. He could end up in a cockfight. πŸ™‚


 

Edited by member 24 May 2025 at 00:08  | Reason: Typo

User
Posted 24 May 2025 at 00:15

deleted

Edited by member 27 May 2025 at 01:44  | Reason: warranted

User
Posted 24 May 2025 at 00:30

You off mate? No apology?


If you return yet again, please use the same username. It makes life so much easier. 


Our pub will be open, the beer will be flowing, but some of us are fussy who we drink with.


Goodnight.


 

Edited by member 24 May 2025 at 00:32  | Reason: Typo

User
Posted 24 May 2025 at 06:56

Originally Posted by: Online Community Member
To me Lyn was the epitome of what this forum should be, she was very knowledgeable and wise. She was also very witty, with a wicked sense of humour, and loved a bit of light hearted banter.


Lyn for a sainthood I'd say, though it was amazing how many times she was attacked for one reason or another. It was more amazing that she always handled it with grace. Interesting that jfd chose to sling off at her as part of his comment. I noticed that it was almost always true that when people attacked Lyn it was when they were having trouble coming to terms with their own cancer and chose her to unload on, just before they left the forum.


Anyway, thanks for your posts Adrian and may you continue to be irreverent and inappropriate on a regular basis. Your own empathy always shows through.


Jules

Edited by member 24 May 2025 at 07:34  | Reason: To remove a stream of shocking swear words and invective.

User
Posted 24 May 2025 at 07:57
Do they serve wine in the virtual pub ! Asking for a friend πŸ˜‚
User
Posted 24 May 2025 at 08:36

Well that escalated.


Before I joined this forum in November 2019, I used it as a read only resource. At that time there were a couple of threads of guys in their final stages of this disease, I have to admit that it took me to a dark place during my diagnosis. Anyway, as we all do, I started reading the threads more inline with my situation and requirements. 


I think this forum offers many things to many people, but as most of us are not medically trained, its primary function is to offer support, which comes in many forms such as sharing experiences, offering advice and sharing links to news articles etc.. and of course,  Adrian's pub, which is listed in the topic area of "Social" on the forum. I think the pub is a good place for general chit chat. Just as a real pub, no one is forced inside. 


Leaving the forum aside, this site has a wealth of technical information on various aspects of prostate cancer. 


Cheers all.


Kev.

Edited by member 24 May 2025 at 08:48  | Reason: Typo

User
Posted 24 May 2025 at 08:51

Originally Posted by: Online Community Member
Do they serve wine in the virtual pub ! Asking for a friend πŸ˜‚


The beauty of our virtual pub, is we sell everything, it never runs out, and doesn't cost a penny. We're open 24 hours a day, 7 days a week. There's also a play area for kids and grandkids


The only downside is the Gents is a bit manky. It appears most of our clientèle have problems hitting the urinal and the condom machine is used so infrequently that it has started to rust. The Tena vending machine, on the other hand, is wearing out and will soon need replacing. Unfortunately, the pad disposal bin is often overflowing.


Despite this we have maintained our 4.5 stars rating on trip advisor.

Edited by member 24 May 2025 at 09:25  | Reason: Additional text

User
Posted 24 May 2025 at 09:53
Isn't this forum a support mechanism for dealing with Prostate cancer?
I don't visit as much as I did in the dark days of 2018 when I contracted the disease but when I do I look at recent posts and scroll down to read anything that interests me.
It takes a few seconds, it's called a choice whether or not I choose to read the thread. I wouldn't dream of berating anyone who posts topics I've little interest in.
I've got a lot out of this forum over the years both physically, and particularly during those early dark months, mentally.
Guy who wrote the opening post is out of order IMHO but we're all entitled to an opinion even if we agree to disagree.
Keep on trucking brothers.
User
Posted 24 May 2025 at 11:43

Morning Adrian.


You have got my old memory box working overtime regarding that conversation with the fantastic Lyn & the oncologist, was that the conversation where you said wow when the other person said he was an oncologist ?


I always believed afterwards that the oncologist was Andy who still posts on this site. 
( my apologies to Andy if I have mixed you up) I believe Andy gives some great info & is also knowledgeable.


 


 

User
Posted 24 May 2025 at 12:51

Indeed it was Jeff. It was like an episode of Undercover Boss. πŸ˜‚


No, Andy62 is very knowlegeable and a top bloke but he isn't medically trained. He wasn't the mystery guest. Call my a cynic but I often question the occupational claims of anyone on t'interweb. If he was an oncologist he'll be back at work doing what oncologists do. It would have been nice if he'd popped back to let us know how he was recovering. I doubt he'll return he'd be bugged too much by posters wanting advice from a professional because they'd  been let down by professionals of their own. 😁


If that was why Lyn decided to call a day. We lost alot and gained nothing, a bit like our trade deal with Trump.


 


 

Edited by member 24 May 2025 at 12:53  | Reason: Typo

User
Posted 24 May 2025 at 13:35

Ah thanks for that Adrian I remember the conversation now but didn’t follow it. So you are saying he more or less vanished after that post. What a great shame if that was the reason Lyn stopped posting but I can understand it, I thought at the time that he was out of order & I felt uncomfortable myself the way the conversation was going. 
My apologies once again to Andy for mixing him up with the other guy.

User
Posted 24 May 2025 at 14:55

I'm not sure the OP is entirely correct in his memory of this forum being only dry topics.


https://community.prostatecanceruk.org/default.aspx?g=posts&m=109217#post109217


Anyway I often pop in Adrian's pub. There aren't many pubs you can pop in with a tenner get a round in and walk out with a tenner.

Dave

User
Posted 24 May 2025 at 15:44

Originally Posted by: Online Community Member
Anyway I often pop in Adrian's pub. There aren't many pubs you can pop in with a tenner get a round in and walk out with a tenner.


Plus you can drive or ride your motor bike there. Have a few, and drive or ride home with no fear of being breathalysed!  

User
Posted 24 May 2025 at 16:22

Adrian I can not guarantee that everything I post  is correct but I tend to stick to things that are not controversial ie higher PSA is likely to be more concerning than lower PSA with caveat. Higher Gleason score is more serious than lower Gleason Score. Earlier stage of disease is better than diagnosis at later stage of disease. Clear margins are preferable to positive margins. PNI may not be significant with caveat. Patience you need to wait for all tests to be completed before you know the full picture. I know that Lyn and many others on this site offer the same advice. There are however times and I think it may have been the case in Lyn’s last post where she strayed outside her knowledge zone. This is dangerous and everybody on this site and I include myself must always be exercising caution to make sure that does not happen.


I joined the site around the time I think Lyn may have left. I can tell however from how people post about her that she was really valued and sorely missed. I however don’t blame the oncologist for his challenge as misinformation must be challenged. That however may not be linked to why she left and  it could just be that she has moved on with her life in which case we should all be happy for her and her partner.

User
Posted 24 May 2025 at 16:29

Well well 


This has certainly opened a can of worms.


Yes i chit chat but I also try to give advise to people who have just been diagnosed the best I can and anyone can read my profile of my journey over the last 3 years and to see its not all doom and gloom.


Anyway im off for a drink 


Take care all 

User
Posted 24 May 2025 at 17:06

Hi IDK2 


I don't blame the 'oncologist', he was right. There are no interior or exterior margins. He was a decent bloke.


In the past, I've queried a couple of Lyn's comments.  I've recently queried comments of another of our best non professional contributors. 


People have challenged my interpretation of research and I've apologised when I was wrong. One of them may have been you? I think I've challenged one of your posts? That's what forums are about. One thing is for sure, noone is always right, professional or non professional. 


During my treatment I've challenged consultants opinions and eventually they conceded I was right. I had to threaten legal action and involve the PHSO to twist their arm, but eventually they admitted their mistakes. 


When Lyn used to post, people asked for her help. She was trusted more than most consultants. She wasn't 100% correct but neither is any consultant. However, far too frequently they think they are, and have a supercilious attitude.


I'd take more notice of our professional visitors if they'd, from post one, tell us that they are professional experts, rather than them later dramatically announcing it. 


Lyn spent and many others on this site spend hundreds of hours of their own time to help others who are struggling with this disease. I value their contribution far more than I do 'professionals' who swan in for a couple of hours, cause a little disruption. Then leave, never to be seen again.

Edited by member 24 May 2025 at 21:00  | Reason: Reduce text

User
Posted 24 May 2025 at 17:58

Originally Posted by: Online Community Member
Well well 


This has certainly opened a can of worms.


Yes i chit chat but I also try to give advise to people who have just been diagnosed the best I can


Hi Phil.


That's why you have earned my total respect. I don't think I'd  be man enough to be going through what you are and still find the time to help others. 


There are several others on here like you. I could name them but don't what to embarrass them. However, included amongst them is one who supports Spurs, one is a school teacher, one had a border collie and one is a younger fella who rides motorbikes.  I've said it before, and l'll say it again, in my opinion  you are all heros.

Edited by member 24 May 2025 at 18:09  | Reason: Additional text

User
Posted 24 May 2025 at 19:12

Hi jfd


I was aghast to read .........'Whilst the social chit chat might make you and the target feel all warm and fuzzy, sadly it has no clinical significance in medicine whatsoever and that is my point..'


As a medical professional surely you realise, the importance of the psychological and indeed positive medical outcomes for patient as a result of contacts with other human beings, talking to people, be mentally active, talk about common interests (like football etc) because a great deal of healing takes place in the mind. This is why modern hospitals try and provide a friendly environment. and opportunities for patients to interact. Of course placebo effects are a well established medical phenomena.


For men and their wives/partners it is very useful to read about how other men and couples deal with the issues like ED, incontinence, lack of libido etc. In my experience the medical profession, particularly the consultants, once they have performed the basic task like surgery, they don't provide any follow up support. This forum does just that, the chit chat thread as you call it, allows us to let our hair down and say what we want to, provided, of course, it does not offend anyone. 


 

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate


 


 

User
Posted 24 May 2025 at 21:39

 


I've just revisted the margins debate thread


According to AI,  there are internal and external margins:


In the context of prostatectomy, internal margins refer to the surgical resection edge around the prostate gland itself, while external margins refer to the surgical resection edge surrounding the surrounding tissue, such as the bladder neck and pelvic side walls. The presence of cancer cells in either internal or external margins is known as a positive surgical margin, which may indicate incomplete removal of the cancer. 


Internal Margins:


These margins are located along the surface of the prostate gland after it has been removed. 


The presence of cancer cells at the internal margin (positive internal margin) suggests that the cancer may have extended beyond the prostate capsule. 


Positive internal margins are a significant indicator of a higher risk of biochemical recurrence (PSA rising after surgery) and may influence treatment decisions, such as whether additional therapy is needed. 


External Margins:


These margins are located on the periphery of the surgical resection, including the bladder neck, pelvic side walls, and other surrounding tissues. 


Positive external margins indicate that cancer cells may have spread beyond the prostate gland itself and into the surrounding tissues. 


Positive external margins are also associated with an increased risk of biochemical recurrence and may lead to the recommendation of additional treatments, such as radiation therapy or hormone therapy. 


In Summary:


Both internal and external margins are important indicators of the extent of cancer removal during prostatectomy. 


Positive margins (cancer cells at the resection edge) suggest incomplete removal and may lead to increased risk of recurrence and a need for additional treatment. 


The presence and location of positive margins influence treatment decisions and impact the prognosis of prostate cancer patients. 


I'm too old tired to further investigate this evening but I might tomorrow.

Edited by member 24 May 2025 at 22:22  | Reason: Typo

User
Posted 24 May 2025 at 23:09
Does this pub have a cock ring machine in the gents? Asking for a friend!
User
Posted 24 May 2025 at 23:31

Yes,  but tell your friend, we're running out of extra small. 

User
Posted 25 May 2025 at 01:43

As Dave has shown by link, there used to be a section for jokes/humorous  stories and the like, so jfd is wrong when he says it was all serious stuff. This light hearted section rather fell away when the old platform was changed to the current one. (Actually Lyn and a number of the members who used both, including myself, preferred the former platform)


It is made clear that this is a support Group, not a Professionally led Group to give expert individual advice, although a number of people have said that they have learnt more from what they have read here than gleaned from their Consultants, who to be fair don't always have or make the time to explain some of the basics. Treatment for PCa is constantly evolving and some Professionals don't even know the extent of this because it's outside their discipline. So members sometimes learn of these advances through other members having more advanced/alternative treatment and can at least ask if they might be suitable, plus a lot of information about all sorts of things that members have experienced or might do so on their PCa journey.


As regards Lyn, she has said several times over the years that she was against having private conversations with members, preferring matters to be discussed on the forum where members could challenge any misconceptions/inaccuracies. She did a great job in my opinion.


In conclusion, jfd MIGHT have been a Doctor, even a good one but clearly doesn't understand what a Support Group means or is for. This being a UK forum perhaps he doesn't understand how our sense of humour helps men deal with the disease. Also, there is nothing to show how much, if anything, jdf has contributed to the forum, as he allegedly has used other user names. "Man does not live by bread alone"

Edited by member 25 May 2025 at 01:57  | Reason: Spelling

Barry
User
Posted 25 May 2025 at 07:31

Therein lies a danger too and that is AI. I find AI can quite frequently be incorrect. It tends to make statements and when you click on the statement it takes you to the link for the  source  and it has been taken out of context. I have not looked at this AI example.


As lay people I think it is reasonable to say positive margins increase risk of BCR. That is a fact that almost any research paper will confirm. There are also reports that suggest positive margins increase risk when present in certain areas, apical margin for instance carries less risk of BCR and then there are other research papers that dismiss this notion.  In the example you have given it basically concludes positive margins increase risk of BCR. 


Many people on this site are understandably desperately seeking info, particularly in the early days of their diagnosis and as a community we should try to share personal experience and trusted information but using Google to fill the gaps even when well intentioned is in my opinion can be misleading. I know in this instance Adrian that is not the purpose of your earlier post. All of us who have been down the Google hole know for every paper stating one thing there is often another paper saying the opposite!


Finally it is nonsense to suggest you can’t have jovial threads and if people choose to post to those threads that in itself shows the benefit of them. Losing your prostate does not mean you have to lose your humour.

Edited by member 25 May 2025 at 07:59  | Reason: Not specified

User
Posted 25 May 2025 at 21:01

Hi


I am a relative newbie to the site ,I find it really useful.I haven’t posted in the “Place to have a chat” yet but have read some of the stories and can understand how people enjoy posting in there ,in my humble opinion it does no harm and a lot of good πŸ‘In my own case I have contributed in areas that are significant to me at the moment ,ED and incontinence.I have found a lot of useful information,as my knowledge and experience improves I like to share the little bits of knowledge I have already gained.There are a lot of people who take the time and trouble to comment and share their knowledge and experience which I guess is what it’s all about.Adrian At a time when many Pubs are closing yours seems to be thriving  πŸ‘

User
Posted 28 May 2025 at 14:27

Reply to Old Barry


Interesting perspective.


I have yet to see any university with a sense of humour faculty. If you know of one please let me know. Some further post graduate study might be in order. But who would be the Dean of the said faculty? Harry Secombe, Peter Sellars, Spike Milligan? Bit of a problem with that one methinks.


Enough nonsense. 

User
Posted 28 May 2025 at 15:49

Reply to jfd.


Have you heard of the Cambridge Footlights or Oxford Revue.


Full of very funny and very well educated folk. You don't seem to realise that comedy and intelligence are not mutually exclusive.


We'll have all the nonsense we want. 


I see you've deleted some of your previous posts, even the opening post! How 'funny' is that? 🫀


In one of your 'self deletions ' you mentioned you've left and returned here many times under different names. I'm beginning to see why. You've probably had more comebacks than Frank Sinatra and more names than The Artist formerly known as Prince.


You also said in another deleted message of yours, that you "refused to converse with the beer swiller. (me)"  That suits me, I'm very fussy who I drink with.


However, despite our bit of a spat, I'm sorry to hear, like most of us, that you have prostate cancer and wish you well.

Edited by member 28 May 2025 at 17:23  | Reason: Additional text

User
Posted 29 May 2025 at 16:36

All I can say to you guys is keep the flag flying.. You guys have been an immense source of inspiration, Ady, Andy62, etc you have all been very consistent and helped me in my darkest hour! Do not let anyone get you down. I am indeed very grateful and I am sure so are a lot of men (and women) on this forum.

User
Posted 30 May 2025 at 08:05

Hi all, not been in for a while due to various life changing events....decorating the bedroom, which led to having a heat pump fitted, which led to a sewage leak on a biblical scale that involved two whole streets of drains backing up to my house, which led to.... well these things escalate don't they?


I've just scanned through this thread and reading between the lines I take it someone has taken exception to the virtual pub. 


I first visited this site when I was told I had a raised PSA and needed biopsies etc etc. 


I was looking for information to help me navigate the new landscape I found myself in. A scary place with a new language, place names I couldn't read and very little help from the locals, kind of like visiting Wales. 


I found all of that in spades. But I also found a group of friends, all in the same boat. I found a place I could ask or talk about anything and everything, express my fears, share my worries and learn from folk who were a lot further on in the journey than me.


The virtual pub is a great idea, I don't have a local, I don't even drink much, but I do think that Adrian's idea is bang on target for this site. I can't understand why the OP would criticise it's formation or use. We all use dark humour in our darkest moments and if it doesn't appeal to you then don't get involved,  simples.


As for the accuracy of information posted, find me any single piece of medical opinion that is 100% sure and I will be impressed. Christ I wouldn't go to my oncologist and say " Hey chum, a bloke down the pub says my margins are all wrong and you need to do another test"


Adrian, you are an inspiration and a friend to many. Keep it up pal and nil carborundum etc etc.


Does the pub have a proper name yet other than virtual pub?  Could be a giggle to come up with a suitable name...


Just popping down to the oncologists finger darling....


Mick 


 


 

User
Posted 30 May 2025 at 09:12

Hello Mick, it's great to see you again, mate.


Thank you very much for your kind words. They are very much appreciated.


  When a  poster is constantly deleting posts especially the opener. It makes it difficult for others to follow the drift, but you've got the general idea.


I hope your biblical flood has subsided and that you didn't end up on Mount Ararat. Joking apart, mate, I can deal with cancer, but cannot cope with any sort of domestic upheaval. I'd have found your situation unbearable, ran away and only returned when the wife had sorted it. 😁


When we got planning permission for the virtual pub and building was in progress, various names were suggested. I love your The Oncologist Finger, someone had suggested similar The Protocologist's Finger. Great minds think alike. The Prostate Harms was another, but it has never been officially named.


The Cock Inn. Would bring back fond memories for many.


One of our regulars, was in IT. We have concerns that the conversation, which now has more posts than a Texan ranch, may be the cause of this site's slow down and 502 fault. He's forwarded this possibility to the site. If we're found to be the fault, like so many pubs, we'll have to shut down.


It would be a shame, especially as we were just branching out into the film industry, and had just started screen writing our first production, Carry on Surgeon. 😷


The wife would be pleased though. For the past year, I've been doing 12 hour shifts behind the bar. She thinks I'm having an affair. I caught her checking my Invicorp supply. 😁


 

Edited by member 30 May 2025 at 10:55  | Reason: Additional text

User
Posted 30 May 2025 at 11:00

Hi Adrian 


Pub name after recent contretemps can only be The Beer Swillers Return.

User
Posted 30 May 2025 at 12:30

Brilliant, mate, brilliant. πŸ‘

User
Posted 30 May 2025 at 13:22

Originally Posted by: Online Community Member


Reply to Old Barry


Interesting perspective.


I have yet to see any university with a sense of humour faculty. If you know of one please let me know. Some further post graduate study might be in order. But who would be the Dean of the said faculty? Harry Secombe, Peter Sellars, Spike Milligan? Bit of a problem with that one methinks.


Enough nonsense. 



Why compare this with something it is not intended to be?  It serves a very  different purpose and other members realize this as replies have shown.

Barry
 
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