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Should we be truthful.

User
Posted 17 Dec 2024 at 10:56

How much information is too much ? We are after all a support group.

A few recent posts prompted me to write this post. I have not had easy journey since diagnosis back in 2013, it has been easier than some and I am still here.

I don't very often reply to newbies and if I do, I don't always tell the whole story, although my profile does give the whole story. I wouldn't want my story to deter a newbie from having treatment. I have seen comments that people would have took thier chances if they had known about certain side effects, never sure why they aren't called adverse effects.

I suspect the majority of "long term" members are here because they are having ongoing issues. My original intention was to stay on here for a short while to tell newbies how well I had done.

It is good that there are still long term members on here that tell thier good news stories, they provided a great contribution to this forum.

Do others on here hold back from posting thier not so good stories.

Thanks Chris 

User
Posted 17 Dec 2024 at 15:32

Good news or bad news, I think most posters tell it as it is. There are a couple of regulars, that are going through a very rough time at the moment. I find their honesty very touching.

It appears to me there are no guarantees with this disease. People with a very similar diagnosis, despite having the same radical treatment, can have enormously different outcomes.

What I've find most beneficial about the site, is it makes you realises that your not on your own, and that others are feeling exactly the same as you. 

There are a few, who although not medically trained, are very knowledgeable. They have clearly explained things to me that consultants have not. 

This site has helped me enormously 

User
Posted 17 Dec 2024 at 18:48

I also try to be frank as I can in my postings, particularly as it might be useful to seeking advice/help. I don't think it serves any purpose sugar coating the challenges I have faced (and still facing) as that would be counter-productive and you might not get the correct advice. As regards whether one rides into the sunset and never to look back post treatment if all goes well, my view is that some folks have a willingness to help others make sense of their predicament, regardless of whether they have had a cure or not.

I see this forum as a community that was there me in my dark days when I struggled to make sense of what was happening to me post treatment. So it is only fair one is as honest as possible when you try to give back.

User
Posted 17 Dec 2024 at 18:42
I’m still here 9 1/2 years on because I guess it gets a bit addictive. Also to keep in touch with people at the same stage as me on our journeys. I was once a prolific poster but after a while it becomes too much to keep sharing. Happily newer members take up the slack and it’s all one mechanism. I remember when I joined that the posters with the most read stories rarely posted anymore , then one by one I heard they had passed. I found a great friend in Bazza and was in contact with him right till the end. Very very sad and it changes you tbh. I help where I can and do off forum work for PCUK and Movember sometimes.
User
Posted 17 Dec 2024 at 23:28
I am still here because I like to mention cock rings regularly and you just can't do that anywhere else!
User
Posted 18 Dec 2024 at 08:57

I remember it. πŸ˜‚

I do miss Lyn and her wit. Once, whilst I was still a bit incontinent, she said something so funny that I literally peed myself.

User
Posted 18 Dec 2024 at 09:06

Puts a whole new spin on Baldricks slug balancing act doesn't it? Lol

User
Posted 17 Dec 2024 at 13:12

I am fairly new to the group and it is my partner who had surgery in May of this year following a high PSA reading in March 2024. He has private medical insurance so things moved quite quickly.

There is no doubt that this forum, probably like all forums of this nature, is skewed towards more negative outcomes. I suspect this is because men with positive outcomes move on and stop posting as do their partners. If you look at the members list, most do not post and many others are around for six months or less. 

I think for those who do stay around they should post honestly from their personal experience with the caveat or understanding from those reading the posts that this is often just a personal experience and may not relate to their personal circumstances. People make choices on how their disease is treated, when they seek treatment, what medication they will take etc etc. Personally I would not want sugar coated responses just honest accounts from people.

I appreciate that when people are looking for positivity but their back story at least on paper looks very unfavourable it is difficult to know how to respond. I think it is good in these situations when people are signposted to factual information rather than anecdotal accounts.

As someone fairly new to all this I have found this forum very helpful. I however also read around relevant and upto date research etc to ensure I am obtaining a balanced insight into the complexities of this disease.

User
Posted 17 Dec 2024 at 13:37

It's a difficult call to make. But I think that deciding on whether to tell everything that flows from a high psa test to PCa diagnosis and treatment and ultimately death is something that must be the choice of every individual, regardless of what impact that could have on someone reading that content. For many putting things down in black and white is a cathartic and necessary process as well as documenting their journey. 

For others holding back on detail is just as necessary to protect their own mental wellbeing as well as a prospective audience.

I think the burden should be upon those that are seeking information about their condition to be responsible about what they access and also to try and ensure that they have support from family or friends if they do choose to view content that is harrowing. Especially those new to the forum and process.

I hate horror films, never been a fan, get scared way too much....so I don't watch them. Unless there is someone there lol.

I made the first part of the journey no man wants to with very little pre-knowledge of the condition. I used this site to increase my awareness. But I was very strict with myself, I did not leap forward beyond the stage I was at myself. If I had wandered forward into treatment etc it would have been very tough to put up with both the process of undergoing tests and taking in the information I needed to understand my status. 

I have seen a lot of men with a raised PSA level thinking that means they have PCa and will be suffering from terrible side effects from treatment they may never need to undergo. 

High profile cases such as Bill Turnbull and Chris Hoy raise the profile of prostate cancer but we only hear about them when things turn terminal, making men think PCa is an immediate death sentence. 

I'd hate to see men or their partners here have to limit the things they write because they may cause concern  for those that will follow them. Cancer is a desperately difficult and scary issue for everyone who is touched by it, there is no way to sugar coat it, or protect people from the honest truth that it may be a bumpy ride and ultimately take your life. 

I know this new might cause some people to react and I think Chris wanted to spark an open conversation  about this matter. 

Although I got the all clear I'm staying around here to pass on my good fortune and story to those who walk in at the ground floor. It's not an express elevator to the top floor, it stops on every level and if you're lucky, you will get off on one of the lower floors as I did. 

Best regards Mick 

 

User
Posted 17 Dec 2024 at 18:17

C.Chris, I would tend to agree with your approach when responding directly to newbies. My story isn't particularly good either so I would not want to be creating a distorted view of likely outcomes for a newcomer.  However in general posting I feel we should tell things as they are and avoid putting a sugar coating on it. I've been on here for three years now so I guess that must mean "long term" member and yes, I'm here because I have ongoing issues. Chris

User
Posted 18 Dec 2024 at 08:51
The famous Lyne Eyre once described my "ring of choice" as a black slug. It took me weeks to calm down πŸ˜‚πŸ˜‚
Show Most Thanked Posts
User
Posted 17 Dec 2024 at 13:12

I am fairly new to the group and it is my partner who had surgery in May of this year following a high PSA reading in March 2024. He has private medical insurance so things moved quite quickly.

There is no doubt that this forum, probably like all forums of this nature, is skewed towards more negative outcomes. I suspect this is because men with positive outcomes move on and stop posting as do their partners. If you look at the members list, most do not post and many others are around for six months or less. 

I think for those who do stay around they should post honestly from their personal experience with the caveat or understanding from those reading the posts that this is often just a personal experience and may not relate to their personal circumstances. People make choices on how their disease is treated, when they seek treatment, what medication they will take etc etc. Personally I would not want sugar coated responses just honest accounts from people.

I appreciate that when people are looking for positivity but their back story at least on paper looks very unfavourable it is difficult to know how to respond. I think it is good in these situations when people are signposted to factual information rather than anecdotal accounts.

As someone fairly new to all this I have found this forum very helpful. I however also read around relevant and upto date research etc to ensure I am obtaining a balanced insight into the complexities of this disease.

User
Posted 17 Dec 2024 at 13:37

It's a difficult call to make. But I think that deciding on whether to tell everything that flows from a high psa test to PCa diagnosis and treatment and ultimately death is something that must be the choice of every individual, regardless of what impact that could have on someone reading that content. For many putting things down in black and white is a cathartic and necessary process as well as documenting their journey. 

For others holding back on detail is just as necessary to protect their own mental wellbeing as well as a prospective audience.

I think the burden should be upon those that are seeking information about their condition to be responsible about what they access and also to try and ensure that they have support from family or friends if they do choose to view content that is harrowing. Especially those new to the forum and process.

I hate horror films, never been a fan, get scared way too much....so I don't watch them. Unless there is someone there lol.

I made the first part of the journey no man wants to with very little pre-knowledge of the condition. I used this site to increase my awareness. But I was very strict with myself, I did not leap forward beyond the stage I was at myself. If I had wandered forward into treatment etc it would have been very tough to put up with both the process of undergoing tests and taking in the information I needed to understand my status. 

I have seen a lot of men with a raised PSA level thinking that means they have PCa and will be suffering from terrible side effects from treatment they may never need to undergo. 

High profile cases such as Bill Turnbull and Chris Hoy raise the profile of prostate cancer but we only hear about them when things turn terminal, making men think PCa is an immediate death sentence. 

I'd hate to see men or their partners here have to limit the things they write because they may cause concern  for those that will follow them. Cancer is a desperately difficult and scary issue for everyone who is touched by it, there is no way to sugar coat it, or protect people from the honest truth that it may be a bumpy ride and ultimately take your life. 

I know this new might cause some people to react and I think Chris wanted to spark an open conversation  about this matter. 

Although I got the all clear I'm staying around here to pass on my good fortune and story to those who walk in at the ground floor. It's not an express elevator to the top floor, it stops on every level and if you're lucky, you will get off on one of the lower floors as I did. 

Best regards Mick 

 

User
Posted 17 Dec 2024 at 15:32

Good news or bad news, I think most posters tell it as it is. There are a couple of regulars, that are going through a very rough time at the moment. I find their honesty very touching.

It appears to me there are no guarantees with this disease. People with a very similar diagnosis, despite having the same radical treatment, can have enormously different outcomes.

What I've find most beneficial about the site, is it makes you realises that your not on your own, and that others are feeling exactly the same as you. 

There are a few, who although not medically trained, are very knowledgeable. They have clearly explained things to me that consultants have not. 

This site has helped me enormously 

User
Posted 17 Dec 2024 at 18:17

C.Chris, I would tend to agree with your approach when responding directly to newbies. My story isn't particularly good either so I would not want to be creating a distorted view of likely outcomes for a newcomer.  However in general posting I feel we should tell things as they are and avoid putting a sugar coating on it. I've been on here for three years now so I guess that must mean "long term" member and yes, I'm here because I have ongoing issues. Chris

User
Posted 17 Dec 2024 at 18:42
I’m still here 9 1/2 years on because I guess it gets a bit addictive. Also to keep in touch with people at the same stage as me on our journeys. I was once a prolific poster but after a while it becomes too much to keep sharing. Happily newer members take up the slack and it’s all one mechanism. I remember when I joined that the posters with the most read stories rarely posted anymore , then one by one I heard they had passed. I found a great friend in Bazza and was in contact with him right till the end. Very very sad and it changes you tbh. I help where I can and do off forum work for PCUK and Movember sometimes.
User
Posted 17 Dec 2024 at 18:48

I also try to be frank as I can in my postings, particularly as it might be useful to seeking advice/help. I don't think it serves any purpose sugar coating the challenges I have faced (and still facing) as that would be counter-productive and you might not get the correct advice. As regards whether one rides into the sunset and never to look back post treatment if all goes well, my view is that some folks have a willingness to help others make sense of their predicament, regardless of whether they have had a cure or not.

I see this forum as a community that was there me in my dark days when I struggled to make sense of what was happening to me post treatment. So it is only fair one is as honest as possible when you try to give back.

User
Posted 17 Dec 2024 at 23:28
I am still here because I like to mention cock rings regularly and you just can't do that anywhere else!
User
Posted 18 Dec 2024 at 00:17

Originally Posted by: Online Community Member
I am still here because I like to mention cock rings regularly and you just can't do that anywhere else!

Brilliant.

 

User
Posted 18 Dec 2024 at 05:58

Originally Posted by: Online Community Member
I am still here because I like to mention cock rings regularly

But not to ladies by private messaging francij1! 

Joking apart, I think most men 'in real life' find it difficult discussing penis problems, but on here 'todger talk' is not a problem.

Edited by member 18 Dec 2024 at 08:17  | Reason: Additional text

User
Posted 18 Dec 2024 at 08:51
The famous Lyne Eyre once described my "ring of choice" as a black slug. It took me weeks to calm down πŸ˜‚πŸ˜‚
User
Posted 18 Dec 2024 at 08:57

I remember it. πŸ˜‚

I do miss Lyn and her wit. Once, whilst I was still a bit incontinent, she said something so funny that I literally peed myself.

User
Posted 18 Dec 2024 at 09:06

Puts a whole new spin on Baldricks slug balancing act doesn't it? Lol

User
Posted 18 Dec 2024 at 14:33

Originally Posted by: Online Community Member
do miss Lyn and her wit. Once, whilst I was still a bit incontinent, she said something so funny that I literally peed myself.

Her wit, wisdom, deep knowledge, factualism is missed.

Edited by member 18 Dec 2024 at 14:35  | Reason: Not specified

 
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