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A Bit Mixed Up...

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User
Posted 21 Jun 2017 at 12:15

Hey all,

Some of you will have seen my previous posts and so I won't bore you with the fine details, basically, I was diagnosed with PC in April 2016 I had just celebrated my 49th birthday. I had an RP in May 2016 followed by 33 Radiotherapy sessions from November 2106. I also have the Prostap injections every 12 weeks.

In April 2017, my PSA was 0.013

Ok, with that out of the way here are my current feelings, I just need to get my issues 'out in the open' and hope someone can offer a bit of advice...

I'm getting the usual side-effect; hot sweats, weight gain around my stomach, absolutely zero libido and hair loss on my legs. I also ache particularly my legs, sometimes I struggle down the stairs and I've only just turned 50 and I am knackered all of the time!

I also feel 'down' at times although I fight like hell to stop those feelings, my ED is awful, I can't go into details here but I don't know whether I'll ever have another erection! I am using (or attempting to) a pump but I have to force myself to go through the routine!

My marriage has been affected, my Mrs is struggling as she says that I have changed, I do get a bit moody but again I try my best to fight that... I just feel like people (wife included) think "oh well, it's over 12 months since surgery, he's fine now" 

I work full time though I am self-employed so it's not as bad as it could be ie stuck in an office or factory 40 hours a week...

I'm not seeking sympathy I just need to get my thoughts down in words!

Anyone else like this?

Thanks for reading...

Andy

Edited by member 21 Jun 2017 at 14:36  | Reason: Not specified

User
Posted 21 Jun 2017 at 18:08

Being diagnosed with cancer is only the start - many people find that their lowest point emotionally comes after all the treatment is finished. It is like putting all your energies into surviving, coping, getting better and then wham - suddenly you have survived and start to wonder what the hell hit you. Some struggle with survivor guilt "why am I okay when others are not so lucky?" and for others it is the "why me? What did I do to deserve this?" For a younger man there can also be a great sense of unfairness "I shouldn't have to deal with these side effects at only 49 / 59 / 69" is common.

If you have a Maggies centre near you, consider contacting them. Many offer counselling for people that have been diagnosed with cancer and have had apparently successful treatment, as well as counselling sessions for people with terminal diagnoses etc. I think some also offer counselling for partners / family members. I struggle to understand your wife's lack of insight but we are all different - probably she would not be able to understand why I have been a member of a prostate cancer forum for so many years. As Johsan says, open lines of communication may help, particularly if you can change the conversation a bit - does she have any friends that have had breast cancer? If so, she can no doubt put herself in their shoes and understand how they may feel about losing a breast(s), what impact that has in terms of their sense of womanliness, the fear that treatment might not work and the knowledge that breast cancer can come back at any point in the future. If she can imagine that, you are half way to helping her understand that this is not all done and dusted for you and probably never will be .... like a woman that has had breast cancer, you will have to be monitored for the rest of your life and that casts a shadow on things.

Your wife may also know something of the emotional impact that menopause can have on women (maybe she can remember her own mother going through it?) - mood swings, aching joints, flushes, inability to sleep, a sense that her body is failing her and a sadness that this proves she is getting older. It should be easy for her to appreciate that exactly the same things are happening in your body.

I don't think you are mixed up at all - I think you are fairly average in how you are feeling so I really hope you can find a way to help your wife understand.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jun 2017 at 16:29

Hello Andy

I expect Chris will be along to advise you and hopefully some of the others on ED. They are the experts, having been, done it, got T, shirts too I expect.

It's easy for other people, including wives I suppose, to see you appearing "normal" and working etc but they can't feel the very real exhaustion that you currently have..

If you are only just turned 50 I am assuming that your missus is around the same age and possibly hasn't yet reached the age where her own changing life might affect her?

Perhaps she has already started those changes and herself is needing reassurance. It's a difficult time of life for most women, (not all, some sail through it and don't even notice. Aren't they the lucky ones !)

As we women age, and the changes to our bodies take place due to our own age related processes we become more likely to feel unattractive and sensitive to lack of attention. It's easy to tell yourself that the other half doesn't fancy you any more.
For men in your situation that is even more difficult because you are not able to show her it isn't true by responding in a physical way. Tensions build and become self perpetuating.

All I can say is please talk if you can. If you tell each other how you really feel then you have a starting point. I know you come home from work and all you want to do is crash out and relax and not have to make an effort and I do understand that. Likewise, if your wife knows truly how you feel then maybe she can make allowances.

Of course you've changed. Your body has already undergone radical surgery and it is only around 7 months since you started the radiotherapy, not to mention the prostrap injections.

Is it possible that both of you are expecting too much too soon.

Unless you can really get right down to the nitty gritty of what you both want then nothing will change and you'll just get rattier and rattier with each other, each saying that the other doesn't understand.

I really hope that somebody else will come along with their take on this because it's sad that at this time of your life your partnership is flagging when you should be propping each other up.

Sorry, not much help am I. You can't undo the past, nobody can. But you can improve the future. Please open up the communication highway !!!

We can't control the winds - but we can adjust our sails
User
Posted 21 Jun 2017 at 19:05

That is such a massive thoughtful meaningful post Lyn. I can only admire you after all these years continuing to help and support people new or ongoing.
I saw this post today and if I'm honest I wanted to reply, but I'm alone in Manchester catching up with family and I am an utter utter wreck with this prostate cancer and how it has totally determined my life this last 30 months.
All I can muster now Andy is that you must try to love your life and your wife. She is probably suffering awfully too as is mine. You really need her and she needs you. The most important organ you possess at the moment is your mouth. Use it to talk through everything , try to smile , kiss a lot. Oh and some wine.
It is a couples disease as I've been told. I'm 24 months post surgery but closer to my wife than ever before , and I mean physically and mentally. It's not the same. It never will be. But it can still be amazing when you open your mind. Focus on loving each other , as you need your wife mate you really do
Best hopes
Chris

User
Posted 22 Jun 2017 at 07:37

Thank you...

You know, when I wrote that post yesterday, I immediately regretted it, I thought it made me sound like I was seeking sympathy or that I was having some kind of breakdown!

For the 2-3 hours that followed the post becoming live, I pondered whether to return and delete it, after all, hundreds of thousands of men have had suffered the indignity of PC and the sh*t that comes with it, why am I so different?!

My mind was taken off the post with my work and to be honest I forgot about it until I received an email saying someone had responded... I honestly thought that it would be a solitary response pandering to my 'cry for help'

How wrong could I be!

Thank you to the three of you who responded and I mean properly responded, you all obviously put some thought and heart into what you wrote back to me and for that, I am incredibly grateful.

I will read and re-read your replies and try to put in place some ideas that will help me, my wife and my family...

As some of you know from a previous post, we (as a family) are off to Spain next month and we are climbing the Ifach Rock in Calpe which is 332m high and hoping to raise £1500 for Prostate Cancer UK - if you feel like donating you can find my previous post with a link to my JustGiving page.

Hopefully, the fact of being on holiday for a couple of weeks will help the relationship too!

Once again, many thanks it really is appreciated.

Andy

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User
Posted 21 Jun 2017 at 16:29

Hello Andy

I expect Chris will be along to advise you and hopefully some of the others on ED. They are the experts, having been, done it, got T, shirts too I expect.

It's easy for other people, including wives I suppose, to see you appearing "normal" and working etc but they can't feel the very real exhaustion that you currently have..

If you are only just turned 50 I am assuming that your missus is around the same age and possibly hasn't yet reached the age where her own changing life might affect her?

Perhaps she has already started those changes and herself is needing reassurance. It's a difficult time of life for most women, (not all, some sail through it and don't even notice. Aren't they the lucky ones !)

As we women age, and the changes to our bodies take place due to our own age related processes we become more likely to feel unattractive and sensitive to lack of attention. It's easy to tell yourself that the other half doesn't fancy you any more.
For men in your situation that is even more difficult because you are not able to show her it isn't true by responding in a physical way. Tensions build and become self perpetuating.

All I can say is please talk if you can. If you tell each other how you really feel then you have a starting point. I know you come home from work and all you want to do is crash out and relax and not have to make an effort and I do understand that. Likewise, if your wife knows truly how you feel then maybe she can make allowances.

Of course you've changed. Your body has already undergone radical surgery and it is only around 7 months since you started the radiotherapy, not to mention the prostrap injections.

Is it possible that both of you are expecting too much too soon.

Unless you can really get right down to the nitty gritty of what you both want then nothing will change and you'll just get rattier and rattier with each other, each saying that the other doesn't understand.

I really hope that somebody else will come along with their take on this because it's sad that at this time of your life your partnership is flagging when you should be propping each other up.

Sorry, not much help am I. You can't undo the past, nobody can. But you can improve the future. Please open up the communication highway !!!

We can't control the winds - but we can adjust our sails
User
Posted 21 Jun 2017 at 18:08

Being diagnosed with cancer is only the start - many people find that their lowest point emotionally comes after all the treatment is finished. It is like putting all your energies into surviving, coping, getting better and then wham - suddenly you have survived and start to wonder what the hell hit you. Some struggle with survivor guilt "why am I okay when others are not so lucky?" and for others it is the "why me? What did I do to deserve this?" For a younger man there can also be a great sense of unfairness "I shouldn't have to deal with these side effects at only 49 / 59 / 69" is common.

If you have a Maggies centre near you, consider contacting them. Many offer counselling for people that have been diagnosed with cancer and have had apparently successful treatment, as well as counselling sessions for people with terminal diagnoses etc. I think some also offer counselling for partners / family members. I struggle to understand your wife's lack of insight but we are all different - probably she would not be able to understand why I have been a member of a prostate cancer forum for so many years. As Johsan says, open lines of communication may help, particularly if you can change the conversation a bit - does she have any friends that have had breast cancer? If so, she can no doubt put herself in their shoes and understand how they may feel about losing a breast(s), what impact that has in terms of their sense of womanliness, the fear that treatment might not work and the knowledge that breast cancer can come back at any point in the future. If she can imagine that, you are half way to helping her understand that this is not all done and dusted for you and probably never will be .... like a woman that has had breast cancer, you will have to be monitored for the rest of your life and that casts a shadow on things.

Your wife may also know something of the emotional impact that menopause can have on women (maybe she can remember her own mother going through it?) - mood swings, aching joints, flushes, inability to sleep, a sense that her body is failing her and a sadness that this proves she is getting older. It should be easy for her to appreciate that exactly the same things are happening in your body.

I don't think you are mixed up at all - I think you are fairly average in how you are feeling so I really hope you can find a way to help your wife understand.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jun 2017 at 19:05

That is such a massive thoughtful meaningful post Lyn. I can only admire you after all these years continuing to help and support people new or ongoing.
I saw this post today and if I'm honest I wanted to reply, but I'm alone in Manchester catching up with family and I am an utter utter wreck with this prostate cancer and how it has totally determined my life this last 30 months.
All I can muster now Andy is that you must try to love your life and your wife. She is probably suffering awfully too as is mine. You really need her and she needs you. The most important organ you possess at the moment is your mouth. Use it to talk through everything , try to smile , kiss a lot. Oh and some wine.
It is a couples disease as I've been told. I'm 24 months post surgery but closer to my wife than ever before , and I mean physically and mentally. It's not the same. It never will be. But it can still be amazing when you open your mind. Focus on loving each other , as you need your wife mate you really do
Best hopes
Chris

User
Posted 22 Jun 2017 at 07:37

Thank you...

You know, when I wrote that post yesterday, I immediately regretted it, I thought it made me sound like I was seeking sympathy or that I was having some kind of breakdown!

For the 2-3 hours that followed the post becoming live, I pondered whether to return and delete it, after all, hundreds of thousands of men have had suffered the indignity of PC and the sh*t that comes with it, why am I so different?!

My mind was taken off the post with my work and to be honest I forgot about it until I received an email saying someone had responded... I honestly thought that it would be a solitary response pandering to my 'cry for help'

How wrong could I be!

Thank you to the three of you who responded and I mean properly responded, you all obviously put some thought and heart into what you wrote back to me and for that, I am incredibly grateful.

I will read and re-read your replies and try to put in place some ideas that will help me, my wife and my family...

As some of you know from a previous post, we (as a family) are off to Spain next month and we are climbing the Ifach Rock in Calpe which is 332m high and hoping to raise £1500 for Prostate Cancer UK - if you feel like donating you can find my previous post with a link to my JustGiving page.

Hopefully, the fact of being on holiday for a couple of weeks will help the relationship too!

Once again, many thanks it really is appreciated.

Andy

 
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