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Never thought I would make it this far

User
Posted 24 Jan 2022 at 17:58

I am writing this in the hope that it gives others diagnosed with aggressive PC some encouragement and thoughts for how to cope.

It was this time, 9 years ago, that my journey towards a G9/T3 diagnosis started. No symptoms, just a raised PSA identified during a routine medical. I thought my world had ended. I didn’t even think I would be around long enough to justify replacing a worn-out pair of shoes and was convinced our Labrador would outlive me (we lost him last year).

I have always been a glass half empty kind of person so listening to advice to ‘think positively’ and ‘take each day as it comes’ has not helped me at all. I think it’s fair to say that my mood has been pretty low over the past 9 years but rather than wait for the inevitable, I have taken some drastic steps. For example: -

  • We sold our house soon after the diagnosis and moved somewhere with a much larger garden. Whilst gardening is not my passion, it has certainly kept me occupied and is a serene and peaceful place to be during the spring and summer months
  • I gave up red meat – just lost the taste for it after my RP and immediately started feeling healthier
  • I gave up full time work 4 years ago and now work 2 to 3 days a week in a self-employed capacity. The lack of stress and the additional free time has been a game changer
  • I have done a couple of bucket list holidays
  • I did some serious financial planning to ensure my wife was better provided for
  • And more recently, we bought a campervan and have been enjoying lots of time away with our new puppy

On reflection, I think I did these things to take control of the situation and to try and keep myself as mentally strong as possible. I don’t think these changes have made me a happier person, but they have allowed me to make new happy memories and to give me the confidence to plan ahead a little which is not something I would have dared to do in the early years.

Sure, ED has been an ongoing issue and continues to upset me, but I have been blessed with an understanding and loving wife of 39 years. I am now on Prostap and Enza so often get the feeling that my little bit of tarmac is running out but, if the past 9 years have taught me anything it would be not to dwell on my diagnosis, to take control of the things I can and to do things that help strengthen me mentally and give me something to look forward to.

Edited by member 24 Jan 2022 at 18:18  | Reason: Not specified

User
Posted 24 Jan 2022 at 17:58

I am writing this in the hope that it gives others diagnosed with aggressive PC some encouragement and thoughts for how to cope.

It was this time, 9 years ago, that my journey towards a G9/T3 diagnosis started. No symptoms, just a raised PSA identified during a routine medical. I thought my world had ended. I didn’t even think I would be around long enough to justify replacing a worn-out pair of shoes and was convinced our Labrador would outlive me (we lost him last year).

I have always been a glass half empty kind of person so listening to advice to ‘think positively’ and ‘take each day as it comes’ has not helped me at all. I think it’s fair to say that my mood has been pretty low over the past 9 years but rather than wait for the inevitable, I have taken some drastic steps. For example: -

  • We sold our house soon after the diagnosis and moved somewhere with a much larger garden. Whilst gardening is not my passion, it has certainly kept me occupied and is a serene and peaceful place to be during the spring and summer months
  • I gave up red meat – just lost the taste for it after my RP and immediately started feeling healthier
  • I gave up full time work 4 years ago and now work 2 to 3 days a week in a self-employed capacity. The lack of stress and the additional free time has been a game changer
  • I have done a couple of bucket list holidays
  • I did some serious financial planning to ensure my wife was better provided for
  • And more recently, we bought a campervan and have been enjoying lots of time away with our new puppy

On reflection, I think I did these things to take control of the situation and to try and keep myself as mentally strong as possible. I don’t think these changes have made me a happier person, but they have allowed me to make new happy memories and to give me the confidence to plan ahead a little which is not something I would have dared to do in the early years.

Sure, ED has been an ongoing issue and continues to upset me, but I have been blessed with an understanding and loving wife of 39 years. I am now on Prostap and Enza so often get the feeling that my little bit of tarmac is running out but, if the past 9 years have taught me anything it would be not to dwell on my diagnosis, to take control of the things I can and to do things that help strengthen me mentally and give me something to look forward to.

Edited by member 24 Jan 2022 at 18:18  | Reason: Not specified

User
Posted 25 Jan 2022 at 07:24

Hi

well done for where you have got to, Tony was diagnosed when he was 61 with gleason 9 T3B, he is now 77 and into his 17th year of his PC journey, posts like yours and others give people a lot of hope that even with the aggresive type it is not the end.

 

all the best for many more years

Barbara x

User
Posted 24 Jan 2022 at 20:55
Someone said to my brother that getting PC was the best thing that happened to him - it led him to make changes to his lifestyle, excercise and diet and possibly saved him from an early grave from heart or other types of cancer. Of course, we are not all so lucky with our type of PC we are dealt, but I think there is hope for many of us and things will not be as bad as we imagined they would be. I am 1 year in G8T4M1n1, with three mets. But the NHS has been a marvel and after radiation and hormone therapy my PSA is undetectable as is the testosterone. I guess I will be on HT for the rest of my life - but it is better than the alternative. I am not quite at that point where I can fully relax and its a case of three steps up the ladder and one snake down, but it is largely up to me.
User
Posted 24 Jan 2022 at 18:20

Well done hope things continue positively gives all us Gleason 9ers some hope πŸ‘

User
Posted 24 Jan 2022 at 19:44

Good job Andrew. I think you have made the best of a bad situation and you've taken control of what you can control.

I know how a G9 diagnosis feels and PC has certainly consumed my life since 2015. I made major changes as well some for the better some not but all were steps forward. I'm back on ADT for life but I think I am happy overall. What seemed like a horror story at first has had some positives and been a way of growing as well.

All the best

John

User
Posted 25 Jan 2022 at 07:26
Great news ,my OH is 6 years G9 T3 unfortunately his had spread to lymph nodes ,but he’s still working and keeping well .

This hopefully gives other men with similar stats hope .

Best wishes

Debby

User
Posted 25 Jan 2022 at 13:56

Thank you, your post is quite wonderful. David was diagnosed in September 2015, G9 Tb3, he is a worrier too. He’s doing brilliantly, manages his worry times, gets on with life and we have a good quality of life. Like others our biggest bug bear is lack of travel. Managing our characters and stress levels in addition to PCa is a daily challenge, most days he rises to this wonderfully. 
I am me, I cry sometimes laugh a lot and do what I can to support me man. David is waiting for a PSMA pet scan, he has had no treatments for over three years.

He did however have a heart attack last July, stent fitted and recovery going well. This may impact on future treatments, but so far so good. 
The worry rumbles along in the background, and it’s constant but manageable. He sings and plays every day, and we enjoy life. 
Thank you for sharing this Andrew you G9 lads are very special. The support here has been great, David doesn’t post, but enjoys hearing your comments. 

Leila 

 

 

User
Posted 25 Jan 2022 at 19:18

Great to hear positive news Andrew, although I can see it’s not always been easy.

My OH was diagnosed 4+3=7 initially but post op histology upgraded him to G9 (although tumour downgraded from T3a - T2) also spread to lymph node. Hopefully most (or all πŸ™πŸΌ) the cancer was taken during the op but still gives us lots of hope if that turns out not to be the case.

Wishing you continued good times ahead.

Same to everyone else on this thread, some amazing stories of hope for us all x

 

User
Posted 27 Jan 2022 at 19:02
What a lovely post. I can relate very well to your journey but for you to put it into words is certainly special.

Many thanks and good luck for the future.

Paul

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User
Posted 24 Jan 2022 at 18:20

Well done hope things continue positively gives all us Gleason 9ers some hope πŸ‘

User
Posted 24 Jan 2022 at 19:44

Good job Andrew. I think you have made the best of a bad situation and you've taken control of what you can control.

I know how a G9 diagnosis feels and PC has certainly consumed my life since 2015. I made major changes as well some for the better some not but all were steps forward. I'm back on ADT for life but I think I am happy overall. What seemed like a horror story at first has had some positives and been a way of growing as well.

All the best

John

User
Posted 24 Jan 2022 at 20:55
Someone said to my brother that getting PC was the best thing that happened to him - it led him to make changes to his lifestyle, excercise and diet and possibly saved him from an early grave from heart or other types of cancer. Of course, we are not all so lucky with our type of PC we are dealt, but I think there is hope for many of us and things will not be as bad as we imagined they would be. I am 1 year in G8T4M1n1, with three mets. But the NHS has been a marvel and after radiation and hormone therapy my PSA is undetectable as is the testosterone. I guess I will be on HT for the rest of my life - but it is better than the alternative. I am not quite at that point where I can fully relax and its a case of three steps up the ladder and one snake down, but it is largely up to me.
User
Posted 25 Jan 2022 at 07:24

Hi

well done for where you have got to, Tony was diagnosed when he was 61 with gleason 9 T3B, he is now 77 and into his 17th year of his PC journey, posts like yours and others give people a lot of hope that even with the aggresive type it is not the end.

 

all the best for many more years

Barbara x

User
Posted 25 Jan 2022 at 07:26
Great news ,my OH is 6 years G9 T3 unfortunately his had spread to lymph nodes ,but he’s still working and keeping well .

This hopefully gives other men with similar stats hope .

Best wishes

Debby

User
Posted 25 Jan 2022 at 13:01
Super post ! Much of the same sentiments in honesty. In June I will be 7 yrs post surgery and have resisted most treatments based on quality and not quantity. I too am on HT for the rest of my life and have kept Enza in the bag instead of front loading. Life continues to be mostly good and yes in some ways even better than pre-cancer re living my dreams and more love and empathy. Worry is awful of course and never really goes away does it ! Biggest bug-bear is having the time and money and apparent health to travel widely , but being unable to get insurance anywhere. Take care !

If life gives you lemons , then make lemonade

User
Posted 25 Jan 2022 at 13:56

Thank you, your post is quite wonderful. David was diagnosed in September 2015, G9 Tb3, he is a worrier too. He’s doing brilliantly, manages his worry times, gets on with life and we have a good quality of life. Like others our biggest bug bear is lack of travel. Managing our characters and stress levels in addition to PCa is a daily challenge, most days he rises to this wonderfully. 
I am me, I cry sometimes laugh a lot and do what I can to support me man. David is waiting for a PSMA pet scan, he has had no treatments for over three years.

He did however have a heart attack last July, stent fitted and recovery going well. This may impact on future treatments, but so far so good. 
The worry rumbles along in the background, and it’s constant but manageable. He sings and plays every day, and we enjoy life. 
Thank you for sharing this Andrew you G9 lads are very special. The support here has been great, David doesn’t post, but enjoys hearing your comments. 

Leila 

 

 

User
Posted 25 Jan 2022 at 19:18

Great to hear positive news Andrew, although I can see it’s not always been easy.

My OH was diagnosed 4+3=7 initially but post op histology upgraded him to G9 (although tumour downgraded from T3a - T2) also spread to lymph node. Hopefully most (or all πŸ™πŸΌ) the cancer was taken during the op but still gives us lots of hope if that turns out not to be the case.

Wishing you continued good times ahead.

Same to everyone else on this thread, some amazing stories of hope for us all x

 

User
Posted 27 Jan 2022 at 19:02
What a lovely post. I can relate very well to your journey but for you to put it into words is certainly special.

Many thanks and good luck for the future.

Paul

 
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