Prostate cancer, Please read and post.

[Walter_B]

A fellow warrior.
Welcome to the forum.
I too have been hit with cancer, unfortunately for me, mine has resulted in metastatic spinal cord compression, which paralysed me so no more sparkying for me.

Sorry to hear that you're paralysed Sidewinder.
"Luckily" for me I got Myeloma. Still a major problem, and although I'm in remission the pain is still as bad and I'm on Abstral (Fentanyl).
It's a pure b#gg3r when you want to work and can't.

Walter

Split from "introduce yourself" it is too important to be left on its own.

 

[Sidewinder]

"Apparently" I have been lucky in getting Prostate cancer.
But that's complete nonsense.
Prostate Ca kills 1 man every 45 minutes in the UK and affects 1 in 8 white men.
It affects 1 in 4 of our darker-skinned ethnic brothers of middle Eastern African and Asian origins I believe.
The 1 in 4 is right but I am not exactly sure what the ethnicity is, but it's dire for all of us.
Unfortunately, I was diagnosed at stage 4, incurable and likely terminal, certainly life-limiting.
It is an absolute crap situation, I can still see and do with my arms, but being stuck in a chair as a tetraplegic is horrible.
It is so frustrating.
I can't work as a spark or do the machine repairs I used to.
OK, yes I had moved into consultancy but the treatment prohibits and limits my ability to work.
It is dire.
The benefits are not enough to live on and I can't supplement them in any way, I have no compensation claim like some people who end up paralysed by an accident and while the NHS did mess up with my diagnosis the solicitors would not take the case on.
After 2 years I am beginning to break down because the treatment is not working as hoped and my condition is not holding up well, I am deteriorating and that is so scary too.
Many of my friends are unsure to cope with my condition so can't face seeing me, and being housebound is not fun either.
I don't wish cancer on anyone it's such a terrible illness.

I am sorry to hear that you have cancer too @Walter_B.
I hope that you have a good outcome.

 

[binky]

Many of my friends are unsure to cope with my condition so can't face seeing me, and being housebound is not fun either.

I think this is probably the worst part, you could really do with people coming round for a chat.

 

[johnb2713]

"Apparently" I have been lucky in getting Prostate cancer.
But that's complete nonsense.
Prostate Ca kills 1 man every 45 minutes in the UK and affects 1 in 8 white men.
It affects 1 in 4 of our darker-skinned ethnic brothers of middle Eastern African and Asian origins I believe.
The 1 in 4 is right but I am not exactly sure what the ethnicity is, but it's dire for all of us.
Unfortunately, I was diagnosed at stage 4, incurable and likely terminal, certainly life-limiting.
It is an absolute crap situation, I can still see and do with my arms, but being stuck in a chair as a tetraplegic is horrible.
It is so frustrating.
I can't work as a spark or do the machine repairs I used to.
OK, yes I had moved into consultancy but the treatment prohibits and limits my ability to work.
It is dire.
The benefits are not enough to live on and I can't supplement them in any way, I have no compensation claim like some people who end up paralysed by an accident and while the NHS did mess up with my diagnosis the solicitors would not take the case on.
After 2 years I am beginning to break down because the treatment is not working as hoped and my condition is not holding up well, I am deteriorating and that is so scary too.
Many of my friends are unsure to cope with my condition so can't face seeing me, and being housebound is not fun either.
I don't wish cancer on anyone it's such a terrible illness.

I am sorry to hear that you have cancer too @Walter_B.
I hope that you have a good outcome.

I had a close friend that had health issues with bowel cancer. All of the members of our model flying club abandoned him, they simply didnt know what to say. I kind of met him head on and spoke openly about cancer with him to the point he started laughing joking, typical workmate type banter going on. I dragged some of the other members with me to see him and they were really uncomfortable with the openness and the content of the conversations with cancer being freely discussed. My mate said that's really what he did want and was quite upset that others couldn't be relaxed and open about his condition.
We did some pretty wild things with him, dragged up off to the zip wire in Wales, took him 'zorbing', got him 4 laps at a race track with Tiff Needel etc. Sadly he passed after about 6 months of our heightened activities but he enjoyed every minute.

 

[Sidewinder]

I had a close friend that had health issues with bowel cancer. All of the members of our model flying club abandoned him, they simply didnt know what to say. I kind of met him head on and spoke openly about cancer with him to the point he started laughing joking, typical workmate type banter going on. I dragged some of the other members with me to see him and they were really uncomfortable with the openness and the content of the conversations with cancer being freely discussed. My mate said that's really what he did want and was quite upset that others couldn't be relaxed and open about his condition.
We did some pretty wild things with him, dragged up off to the zip wire in Wales, took him 'zorbing', got him 4 laps at a race track with Tiff Needel etc. Sadly he passed after about 6 months of our heightened activities but he enjoyed every minute.

I am happy to discuss my situation too, and I think that the issue with some of my friends, they can't cope with the fact that I am coping.
But them not coping is not helping me.
You might be able to guess that I am happy to discuss this from these posts.
On top of that, I have authored several articles in print media, Professional Electrician magazine being one, where I have been open about my condition and promoted men's health and getting checked for PCa, and I don't think that has gone down well with most of my physical local friends either.

 

[binky]

I had a close friend that had health issues with bowel cancer. All of the members of our model flying club abandoned him, they simply didnt know what to say. I kind of met him head on and spoke openly about cancer with him to the point he started laughing joking, typical workmate type banter going on. I dragged some of the other members with me to see him and they were really uncomfortable with the openness and the content of the conversations with cancer being freely discussed. My mate said that's really what he did want and was quite upset that others couldn't be relaxed and open about his condition.
We did some pretty wild things with him, dragged up off to the zip wire in Wales, took him 'zorbing', got him 4 laps at a race track with Tiff Needel etc. Sadly he passed after about 6 months of our heightened activities but he enjoyed every minute.

We really don't handle ' end of life ' well in the UK. But if/ when I end up in the same position, that's exactly what I would want.

 

[binky]

I am happy to discuss my situation too, and I think that the issue with some of my friends, they can't cope with the fact that I am coping.
But them not coping is not helping me.
You might be able to guess that I am happy to discuss this from these posts.
On top of that, I have authored several articles in print media, Professional Electrician magazine being one, where I have been open about my condition and promoted men's health and getting checked for PCa, and I don't think that has gone down well with most of my physical local friends either.

Trying to take a positive from a negative situation is the best thing to do, it gives your life some extra meaning, and if it saves a few others from the same fate as you, brilliant! Shame some of your friends can't cope.

Currently I'm working on my own legacy. As you are probably aware I'm quite keen on green issues, part of which involves rewilding Dartmoor, having got bored of lots of talking and no action on rewilding forums, I've taken to collecting tree seeds and planting them in suitable places on the moor. ' Pick and plant' as I like to call it. So far I've planted about a thousand acorns, I'm just hoping to live long enough to see the start of several new small woodlands and vastly improved biodiversity on the high moor. More importantly I'm hoping the idea catches on with a lot more people ( I'm not the only person doing this). If I'm really lucky 'pick and plant ' will go viral - I've been trying to think of a snazzier name to help that . There's lots of tree planting schemes around, but they cost lots of money and time to organise, ergo they are plain slow. Picking up a few seeds and planting them somewhere else is cheap and easy, and you get a good walk whilst you're at it

 

[johnb2713]

Trying to take a positive from a negative situation is the best thing to do, it gives your life some extra meaning, and if it saves a few others from the same fate as you, brilliant! Shame some of your friends can't cope.

100% agree

I've taken to collecting tree seeds and planting them in suitable places on the moor. ' Pick and plant' as I like to call it. So far I've planted about a thousand acorns,

I do exactly that in my local area, Ive taken acorns found in my woodland walks and planted them in areas along the banks of the River Trent (with farmers permission). There are quite a few trees now established over the last 10 years.

 

[binky]

I do exactly that in my local area, Ive taken acorns found in my woodland walks and planted them in areas along the banks of the River Trent (with farmers permission). There are quite a few trees now established over the last 10 years.

Excellent work .

 

[Mike P]

I know it’s to late for you Sidewinder, but they are on the cusp of a new test. The PSA test is not by any means perfect but it’s a start. To many people are frightened to have tests in case of what they might find, and its one of those things people just don’t want to discuss. The new test apparently is non invasive and is likely to save a lot of lives. The fact that people like yourself are prepared to talk about it openly is a credit to yourself and others like minded men. I have lost to many friends to this killer. I applaud you for the frank and openness of your debate and wish you well.

 

[Sidewinder]

I know it’s to late for you Sidewinder, but they are on the cusp of a new test. The PSA test is not by any means perfect but it’s a start. To many people are frightened to have tests in case of what they might find, and its one of those things people just don’t want to discuss. The new test apparently is non invasive and is likely to save a lot of lives. The fact that people like yourself are prepared to talk about it openly is a credit to yourself and others like minded men. I have lost to many friends to this killer. I applaud you for the frank and openness of your debate and wish you well.

The PSA test is non-invasive in as much as it is done in the same way as any “normal” blood test.
I am aware of the new test.
I tend to keep up with the availability of treatments because I have had so many fail on me!
Thank you for the heads up anyway.
I suspect many people will not be aware of the developments.
One thing that NEEDS to change is the taboo that is the discussion of men’s health.
We are dying because we don’t know what to say about our health.

 

[binky]

I know it’s to late for you Sidewinder, but they are on the cusp of a new test. The PSA test is not by any means perfect but it’s a start. To many people are frightened to have tests in case of what they might find, and its one of those things people just don’t want to discuss. The new test apparently is non invasive and is likely to save a lot of lives. The fact that people like yourself are prepared to talk about it openly is a credit to yourself and others like minded men. I have lost to many friends to this killer. I applaud you for the frank and openness of your debate and wish you well.

I have to say I'm quite pleased about the prospect of the new test. My father had prostrate cancer, so there's a high chance I will get it too, but call me strange fingers in certain holes don't appeal to me much . Billy Connolly did a good sketch about it many years ago and how he felt he had been 'violated', and Pamela's reaction being to laugh her socks off .

 

[Sidewinder]

I have to say I'm quite pleased about the prospect of the new test. My father had prostrate cancer, so there's a high chance I will get it too, but call me strange fingers in certain holes don't appeal to me much . Billy Connolly did a good sketch about it many years ago and how he felt he had been 'violated', and Pamela's reaction being to laugh her socks off .

The DRE (Digital Rectal Examination) is not as bad as it sounds.
Let's put it like this, a finger up the bum or an early death.
If I had known, I know which I would have chosen, but because I was a fool, I made the wrong choice.
The DRE comes AFTER the PSA blood test, and probably 2 PSA blood tests to minimise the potential for errors.
I know I had 2 blood tests before the DRE, and by the time I got back to the car from the GPs room, I had forgotten about the DRE.
It was something and nothing.

 

[binky]

The DRE (Digital Rectal Examination) is not as bad as it sounds.
Let's put it like this, a finger up the bum or an early death.
If I had known, I know which I would have chosen, but because I was a fool, I made the wrong choice.
The DRE comes AFTER the PSA blood test, and probably 2 PSA blood tests to minimise the potential for errors.
I know I had 2 blood tests before the DRE, and by the time I got back to the car from the GPs room, I had forgotten about the DRE.
It was something and nothing.

I ask for the PSA test every time they want a blood sample for anything else, and as I have high cholesterol, that's usually at least once a year. All been clear so far, and I've been getting them done for at least 5 years now. I think dad was diagnosed with prostate cancer at about 70, so I want to be ahead of the game

 

[johnb2713]

Not wishing to rain on anyone's parade here but the PSA test is not a miracle saviour. Research has shown around 3 in 4 men with a raised PSA level will not have cancer, and around 1 in 7 men with prostate cancer would have a normal PSA result, so it's kind of fishing expedition to find the 1 in 4, the poor chap in the one in seven group really loses out. The DRE is the best screening method but many men are reluctant to have it. My offshore medical was done every 2 years and every time there was the rubber gloves coming out LOL, in the end it became a bit of a joke with the medic.
I did some contract ROV work in Norway and the company insisted that we all went through a Norwegian medical before being allowed to work on their installations. Most of the medical was done by a nurse, one part of it was a mandatory drugs test from a witnessed urine sample, she literally stood there and watched you pee into a container, it did feel a bit awkward. She was a very nice you lady looking after a whole bunch of offshore oil workers, she asked do you examine yourself, not quite sure what exactly she was asking, she explained do you examine your testicles, I sort of said well I suppose so when I'm in the shower etc, not really thought about it too much. She then said would you like me to check them, now I really did feel awkward but how could I possibly refuse. I was beckoned to lay on the table and what followed was the most excruciating, painful fumbling of my nuts I've ever had. I felt sick with the pain but pleased with the expert analysis stating they're fine. The other lads in my group that followed, I didn't warn them LOL, the looks on their faces when they came was so funny.
I know its hard at times to not be embarrassed in front of the medical profession, but they've seen it all before and know what to expect. With regards to prostate cancer as the medics say 'Nobody should die of embarrassment' and that is so true.

 

[binky]

Not wishing to rain on anyone's parade here but the PSA test is not a miracle saviour. Research has shown around 3 in 4 men with a raised PSA level will not have cancer, and around 1 in 7 men with prostate cancer would have a normal PSA result, so it's kind of fishing expedition to find the 1 in 4, the poor chap in the one in seven group really loses out. The DRE is the best screening method but many men are reluctant to have it. My offshore medical was done every 2 years and every time there was the rubber gloves coming out LOL, in the end it became a bit of a joke with the medic.
I did some contract ROV work in Norway and the company insisted that we all went through a Norwegian medical before being allowed to work on their installations. Most of the medical was done by a nurse, one part of it was a mandatory drugs test from a witnessed urine sample, she literally stood there and watched you pee into a container, it did feel a bit awkward. She was a very nice you lady looking after a whole bunch of offshore oil workers, she asked do you examine yourself, not quite sure what exactly she was asking, she explained do you examine your testicles, I sort of said well I suppose so when I'm in the shower etc, not really thought about it too much. She then said would you like me to check them, now I really did feel awkward but how could I possibly refuse. I was beckoned to lay on the table and what followed was the most excruciating, painful fumbling of my nuts I've ever had. I felt sick with the pain but pleased with the expert analysis stating they're fine. The other lads in my group that followed, I didn't warn them LOL, the looks on their faces when they came was so funny.
I know its hard at times to not be embarrassed in front of the medical profession, but they've seen it all before and know what to expect. With regards to prostate cancer as the medics say 'Nobody should die of embarrassment' and that is so true.

PSA isn't perfect, but better than not doing it. Awareness of the symptoms is important, it's what eventually pushed dad into seeing the doctor.

As for medical professionals, I think they only give out medical gowns to make you feel more comfortable

 

[Walter_B]

Well gentlemen, I seem to have started a very decent discussion on the big C. I'm very happy that so many of you have opened up to the chat, but of course saddened by the number of us who have been hit.
A few years ago a meeting was held in my present town on starting a Men's Shed. I went along because I wanted to learn wood turning. Trustee's were called for and no matter how hard I tried, I just couldn't keep my arm down - it didn't seem that many wanted to be a trustee and if too few trustees were recruited then there wouldn't be a Stonehaven and District Men's Shed - we've been running for coming up for four years soon.
Sorry for the spurious waffle, but what brought me onto this is that Men's Sheds started in Australia and the man who started them, Professor Barry Golding, coined the phrase "Men don't talk face to face, they talk shoulder to shoulder".
I'm glad to see we're managing to discuss serious issues very freely - although it is a bit shoulder to shoulder as we can't see each other.


I have had some very good feedback on my inverter/battery issue and am still working through suggestions. It's taking me a bit of time but I'm getting there. I am, however, still a very long way from getting it up and running. Please don't think I'm not interested in those pointers and suggestions - once I get it done, or when I hit a problem, I'll let it be known.
I just hope I get it all going soon.
Cheers guys

 

[johnb2713]

Well gentlemen, I seem to have started a very decent discussion on the big C. I'm very happy that so many of you have opened up to the chat, but of course saddened by the number of us who have been hit.

It is surprising for sure

A few years ago a meeting was held in my present town on starting a Men's Shed. I went along because I wanted to learn wood turning. Trustee's were called for and no matter how hard I tried, I just couldn't keep my arm down - it didn't seem that many wanted to be a trustee and if too few trustees were recruited then there wouldn't be a Stonehaven and District Men's Shed - we've been running for coming up for four years soon.

That sounds a great idea.

Sorry for the spurious waffle, but what brought me onto this is that Men's Sheds started in Australia and the man who started them, Professor Barry Golding, coined the phrase "Men don't talk face to face, they talk shoulder to shoulder".

What a great observation and yep, I can see it, so true.

I'm glad to see we're managing to discuss serious issues very freely - although it is a bit shoulder to shoulder as we can't see each other.

Good to have an open discussion, maybe a blessing for you all not to see me and my ugly mush

I have had some very good feedback on my inverter/battery issue and am still working through suggestions.

What problems are you experiencing? Is there another thread somewhere?

It's taking me a bit of time but I'm getting there. I am, however, still a very long way from getting it up and running. Please don't think I'm not interested in those pointers and suggestions - once I get it done, or when I hit a problem, I'll let it be known.

Aye, do keep us up to date.

I just hope I get it all going soon.
Cheers guys

I'm sure you will, I was months building my system, but switched on just before Christmas (I set a target date of the 24th December to make me get it up and running to cook the Xmas dinner!

 

[Sidewinder]

I know that PSA isn’t perfect, but it’s a start, and if you check the guidelines from Prostate Cancer UK, this has changed from the old recommendations, to become a worthwhile test, due to improvements in the procedure.
PSA would have worked on me.

A lot of work has been and is being done on the false negatives from the test with good results apparently, I am in touch with a patient adviser for PCUK, and he gets us some great information on the latest developments and does amazing work on the awareness.
He is also an advisor to NICE, so hoping to get some real change in the way the UK deals with PCa which would be awesome.

It is good to see the discussion about health, and thanks to @Walter_B for starting this.

I think it is easier for men to discuss such things as Ca and other health issues on Social Media because of the anonymity of it all.

But, you know what, I don't care. What is important is that it is happening.
It is being discussed.

Can I please ask that those who are not involved in the discussion, please become involved?
Not here necessarily, but, out there, in the real world, you might just save a life, and that life could be yours, or that one of a friend, or a family member, a loved one.
The conversation doesn't have to be about PCa.
Any issues around men's health help.
It doesn't have to be in the real world, other social media may be a good place to start, especially if you have a story to tell.
Young uns think that they are invincible.
Us old fogeys know that they are not, one day those young uns are going to be us old fogeys, if they last that long, and those young uns are going to be suffering from the same issues we are today, because nobody has done anything about awareness.

Those young uns are going to be our sons and grandsons. What greater reason do we need to raise awareness of men's health in any and all ways than to save our sons and heirs from ill health, suffering and premature death?
The thought that my son is more susceptible to PCa, is breaking me.
I know that it's the Russian Roulette that is in part genetics. But try rationalising that when you have a needle in your hand pumping a drug into your bloodstream that is killing bits of you to try and save other bits.

Mental health issues in construction are massive, and not discussed.

There are others, but I am getting a little bit tired again now, so time to try and sleep, again.

Insomnia, is a side effect of my medication, unfortunately.

I think my post may be a bit disjointed but I hope that the message comes through as intended. Sorry if it's a bit disorganised. Typing through the tears is hard.

 

[binky]

I think it is easier for men to discuss such things as Ca and other health issues on Social Media because of the anonymity of ii.

Talking to strangers is often easier than talking to friends and family.

Mental health issues in construction are massive, and not discussed.

Current financial pressures must be pushing lots of people to the brink.