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User
Posted 26 Jul 2015 at 20:34

Hi, I have not been on here for a while but just need a it of support.  I am trying to stay positive but find it very hard to cope with my other half's mood swings and tiredness, we are on the watching and waiting  list gleason has gone from 6 to 7 but low PSA 1.4, we have to go for a check up in September and MRI in November, he is not sure what to do and neither am I any more.  

 

User
Posted 10 Aug 2015 at 14:50

I think its easy for women to over-generalise men , as it is for men to over-generalise women . Millions of years of survival and yet incompatability , even though love .
I think the "average" man thinks about sex far too much of the time , and yes his life is very much controlled by his willy and its urges. A pretty girl in a summer dress. Its hard for a man to explain to a woman the chain of reaction that that can set off . And yes the average man needs fairly regular sex like air and water.
And there are the extremes of course . Men that think of nothing else at all , and men that are actually not that bothered to be honest . Ive worked a lifetime of 12 hour nightshifts with men and there is not a lot you don't learn , and some acts that are essential in a relationship to some men , are actually repulsive to another man . So we ARE all different . And yes ive met women at both ends of this spectrum aswell .
In my mind , for what it is worth , PCa and loss of sexual function can devastate some men and not so much others depending on what they were like before. Depending where that man was before on the spectrum will affect his recovery and wish to recover. If he/you didn't talk much before or experiment or generally have a laugh , then its going to be harder to resolve yeh!! If you as a couple had a happy adventurous easy-going love life with lots of talk then it is going to be easier to sort.
We had / have an amazing love-life I think with lots of openness etc , but being utterly impotent now HAS taken something huge away from me and it hurts . But im hopeful it will come back . Yes , the "loves and cuddles" conversation is ok and comforting , but in reality the erection is missing , for BOTH of you I think . Neither of you wants it gone .
We are positively working hand-in-hand to go through the process of regaining function , and in the meantime we will compromise in every way to keep each other happy . It will be easy and a laugh I think, but with also some frustration and sadness.
I don't think you can change the person you started out with , and certainly not force them . The only way is to comfort and reassure and show that you are still there for them. Encourage gently forwards ??
I hope this has been even remotely helpful . Im not great with words sometimes
Chris

User
Posted 26 Jul 2015 at 22:25
Hi and welcome,

I can't help with an answer but by replying it might help to get an answer by adding another post so someone will pick up on it and be able to help, you will get a lot of support and encouragement here

Arthur

User
Posted 26 Jul 2015 at 23:19

I presume you're hubby is on active surveillance, but if the waiting is causing mood swings, a treatment option could well be the solution. Then, you've got the big decision - what treatment? I couldn't have dealt with AS - I just wanted it out ASAP. I hope you're able to come to a decision that helps the two of you.

Paul

Stay Calm And Carry On.
User
Posted 27 Jul 2015 at 05:22

morning

not had experiance of AS but I think it must be difficult as you have no idea as to how things are developing until next check, and I would think that the worry of it might be a lot worse untill you do get checked must play on your mind, if the option was mine would be tell me my treatment options and let me get on with my life

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 27 Jul 2015 at 08:15

Hello Wishes.

I assume the mood swings are caused by the uncertainty of your current situation rather than any drugs your husband might be on?

Active surveillance doesn't suit everyone. Mine was on it for a year and it was what he wanted. We lived that year to the full and put the prostate cancer to the back of our minds as much as we could. For us the regular checks were a bonus so we knew what was going on.

Despite the low PSA (which is raised from 0.4 to 1.4) I would have thought the raising of the Gleason would have been enough to warrant the consultant telling him it's time to think of what he wants to do.
Now, that's a difficult one as you are aware, because there are a number of options.
You say in his profile that Brachytherapy has been offered. What other suggestions have been made.

I know you've been a member since 2013 but have you downloaded or applied for the Toolkit yet. There is so much info in there. It might help you formulate your questions for your September check-up and the MRI in November will also help with information as to how the cancer has progressed.

The mood swings, and tiredness may well be a result of the stress he is under (like a mild form of depression) because he just doesn't want to think about the cancer, making a decision and the future. Is he worrying about the incontinence and sexual aspects of treatment?

All I can say with great certainty is that you want support - You've got it, in spades. It's what we do best.

Tell us how we can help. What is it you want to know?

My husband had permanent seed implants done in June last year so we have just celebrate their first birthday! There were initial niggles until it all settled down but his PSA is well down and most things are back to normal. I'm not pushing the treatment, just stating it as a fact.

We-re here. Use us as a sounding board for your feelings. It might help you even if we can't help the other half

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 27 Jul 2015 at 11:09

Hello again wishes.
You may not be worried about the sex side (as I think the majority of wives/partners on here would agree) but it seems for a man that sexual ability defines them in some way and they are less of a man if they cannot perform as they did when they were 18!!
He might say he isn't worried but perhaps that is secretly bothering him.

A lot of men can't get their heads round the fact that we love them for themselves. Yes sex is a lovely bonus but IF and it's a big IF, it disappears or changes, then there are other physical ways we can show we love each other.

It is a massive challenge to make what you hope is the right decision. The "what ifs" are there for every treatment and nobody can predict how it will affect you.

Mine didn't want to discuss it either and was very head in the sand about treatments until the time came when he HAD to make a choice but that was virtually right on top of the appointment!

These men eh?

Edited by member 27 Jul 2015 at 11:10  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 28 Jul 2015 at 16:13

Hi, the comments so far are good and there may well be more support coming from other members as and when things change(if they do) but having no one to talk to could be resolved a little by speaking online to the Macmillan nurses, just press "chat" and I'm told they will give sound advice. They are doing it all the time and understand what you are both going through and how to help you.

Hope you both get through this together as it's better to fight PC jointly, love will get you through most things and the support of each of you helps the other.

Regards Chris/woody

Life seems different upside down take another viewpoint

User
Posted 28 Jul 2015 at 18:38

Well I thank you again, you are so much like me it is not all about them we are part of the situation and have to live with the little brat that used to be a child protected by Mum :) lol I love him to bits but it is driving me insane :) he has always been the provider and I think this has knocked the stuffing out of him but he is not alone I could shake him sometimes but then just cave in and cuddle him........madness this thing called love

User
Posted 10 Aug 2015 at 18:56
With regard to Julie's comment "make him think it was his idea first routine", I just want to say that we men know this is a trick you ladies play! We just go along with it because it makes you happy, lol!

As for women talking more than men, I was talking to a friend and he said he hadn't spoken to his wife for 3 weeks. When I asked him why he said "I don't like to interrupt". Lol again!

Just joking!

To be serious though, I do think there is much truth in Julie's post in that as a general rule men are governed by what is in their trousers.

I am very fortunate in that I found Miss Right (first name being always, btw!) She is constantly telling me that she just wants me alive and it doesn't matter about the lack of/change in intimacy. I believe her of course but mentally it is difficult to come to terms with, especially with a pre surgery libido and an attractive woman as a wife.

I learned from a male member of this forum that I can still regard myself as a man, maybe a different man but still a man. However, the male ego within me finds it extremely difficult in accepting I cannot get a erection easily as in pre surgery days, ie when you want one or just when it goes up and down on its own. My wife and I have found a compromise but I can agree Julie is right when she says men and ED are not a good combination.

Just some thoughts from a male member of the forum

Show Most Thanked Posts
User
Posted 26 Jul 2015 at 22:25
Hi and welcome,

I can't help with an answer but by replying it might help to get an answer by adding another post so someone will pick up on it and be able to help, you will get a lot of support and encouragement here

Arthur

User
Posted 26 Jul 2015 at 23:19

I presume you're hubby is on active surveillance, but if the waiting is causing mood swings, a treatment option could well be the solution. Then, you've got the big decision - what treatment? I couldn't have dealt with AS - I just wanted it out ASAP. I hope you're able to come to a decision that helps the two of you.

Paul

Stay Calm And Carry On.
User
Posted 27 Jul 2015 at 05:22

morning

not had experiance of AS but I think it must be difficult as you have no idea as to how things are developing until next check, and I would think that the worry of it might be a lot worse untill you do get checked must play on your mind, if the option was mine would be tell me my treatment options and let me get on with my life

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 27 Jul 2015 at 08:15

Hello Wishes.

I assume the mood swings are caused by the uncertainty of your current situation rather than any drugs your husband might be on?

Active surveillance doesn't suit everyone. Mine was on it for a year and it was what he wanted. We lived that year to the full and put the prostate cancer to the back of our minds as much as we could. For us the regular checks were a bonus so we knew what was going on.

Despite the low PSA (which is raised from 0.4 to 1.4) I would have thought the raising of the Gleason would have been enough to warrant the consultant telling him it's time to think of what he wants to do.
Now, that's a difficult one as you are aware, because there are a number of options.
You say in his profile that Brachytherapy has been offered. What other suggestions have been made.

I know you've been a member since 2013 but have you downloaded or applied for the Toolkit yet. There is so much info in there. It might help you formulate your questions for your September check-up and the MRI in November will also help with information as to how the cancer has progressed.

The mood swings, and tiredness may well be a result of the stress he is under (like a mild form of depression) because he just doesn't want to think about the cancer, making a decision and the future. Is he worrying about the incontinence and sexual aspects of treatment?

All I can say with great certainty is that you want support - You've got it, in spades. It's what we do best.

Tell us how we can help. What is it you want to know?

My husband had permanent seed implants done in June last year so we have just celebrate their first birthday! There were initial niggles until it all settled down but his PSA is well down and most things are back to normal. I'm not pushing the treatment, just stating it as a fact.

We-re here. Use us as a sounding board for your feelings. It might help you even if we can't help the other half

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 27 Jul 2015 at 08:29

Thank you for responding, he is on AS and I am finding it hard to help as we do not know what to do, he says it is not worrying him but I know that deep down it is. I try to keep positive and reassure him that all will be OK but I am scared and worried about him. Every time I try to approach the subject he just says oh I am OK! We are lucky as we have a strong bond but I just feel I have nobody to talk to, some of my friends just say oh well it is easy to treat blah and it s common and most men die with it rather then from it which I find very hard to deal with. thank you again

User
Posted 27 Jul 2015 at 08:39

Thank you Sandra, you have made me feel a little better, he has been offered BT but is unsure, I am not worried about the sex side of things as I love him for who he is.  I have to go to work now but will check in later and download the TK 

 

User
Posted 27 Jul 2015 at 11:09

Hello again wishes.
You may not be worried about the sex side (as I think the majority of wives/partners on here would agree) but it seems for a man that sexual ability defines them in some way and they are less of a man if they cannot perform as they did when they were 18!!
He might say he isn't worried but perhaps that is secretly bothering him.

A lot of men can't get their heads round the fact that we love them for themselves. Yes sex is a lovely bonus but IF and it's a big IF, it disappears or changes, then there are other physical ways we can show we love each other.

It is a massive challenge to make what you hope is the right decision. The "what ifs" are there for every treatment and nobody can predict how it will affect you.

Mine didn't want to discuss it either and was very head in the sand about treatments until the time came when he HAD to make a choice but that was virtually right on top of the appointment!

These men eh?

Edited by member 27 Jul 2015 at 11:10  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 28 Jul 2015 at 11:30

Thank you for your support, he is sticking his head in the sand just says oh that! i am not even thinking about it............But I am and need him to understand that we can get through it together. He did promise to call on of the nurses which is a step forward..........He is also changing his diet and has stopped smoking, been 7 months now :)

User
Posted 28 Jul 2015 at 16:13

Hi, the comments so far are good and there may well be more support coming from other members as and when things change(if they do) but having no one to talk to could be resolved a little by speaking online to the Macmillan nurses, just press "chat" and I'm told they will give sound advice. They are doing it all the time and understand what you are both going through and how to help you.

Hope you both get through this together as it's better to fight PC jointly, love will get you through most things and the support of each of you helps the other.

Regards Chris/woody

Life seems different upside down take another viewpoint

User
Posted 28 Jul 2015 at 18:16

Hi thank you all so much, it is better to share things with people who are going through the same as you are, I have spoken with the chat line and oh my goodness what a help she was, (not saying that you lot are no help lol because you are) written down a whole load of questions to ask at the next appointment, sorry but I am going to do the talking this time :) would have and should have asked loads last time, like what T stage and how many samples contained buster the cancer dragon! So thanks again we will bust the little devil together we are strong thank you all so much and you Sandra you are a star in a reasonably priced forum really lifted me up I just needed a little help as battling on with a partner who I think does not understand how I feel and has shut himself into his little bubble of self thinking he is on his own when he is not

User
Posted 28 Jul 2015 at 18:27

Glad to have been of help.

Mine was pretty much the same so I have only spoken through experience.

I did initially respect his need for dealing with it but there comes a time where you have to point out that it isn't all about you.

As wives who really worry and care we have a real need to show it and if our men sit on their hands wondering what to do - well somebody has to tackle it don't they?

I'm sure none of our men would knowingly shut us out. I feel sometimes they think they are protecting us but, of course, the less we know, the more we worry.

You take care now. When his stubbornness gets too much come and rant to us. We're used to it!!

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 28 Jul 2015 at 18:38

Well I thank you again, you are so much like me it is not all about them we are part of the situation and have to live with the little brat that used to be a child protected by Mum :) lol I love him to bits but it is driving me insane :) he has always been the provider and I think this has knocked the stuffing out of him but he is not alone I could shake him sometimes but then just cave in and cuddle him........madness this thing called love

User
Posted 09 Aug 2015 at 23:17
Hello wishes

Your OH sounds exactly like mine. Head in sand, ignore it and it will go away? Traditional strong type of man, doesn't talk about feelings?

My OH is eight months on from the RRP, and hasn't really done any talking in all that time. If the ED nurse asks the right questions she can sometimes get him to talk- maybe the consultant will be able to get your OH to talk.

What we did say when he was diagnosed is that the priorities were, in this order, alive, continent, potent.

I had a similar rant on here some time ago. I haven't put many conversations on here, so I'm sure you'll find the one I mean. Someone put a reply on which made me stop and think. That while I want to talk, and women in general want to talk, men really don't. I'll try and find it and post it here

Louise

Edited by member 09 Aug 2015 at 23:24  | Reason: Not specified

User
Posted 09 Aug 2015 at 23:23
Wishes,

Here is the post. It helped me a lot. I hope it helps you.

From: Trevor Boothe

Posted 01 June 2015 20:43:32

Hi Louise,

You have been given some really good and helpful advice both from the Guys and the Girls my take on this is coming from a different perspective . Remember the old saying Men are from Mars and Women are from Venus, us girls we like to chat don't we , we like to hash over emotions , what he said, what she said, does he still love me, why did he say that you know the kind of thing . That is the way our brains work, we are complicated if there is a problem we like to talk about it and find solutions and then talk about it some more because just maybe we can find a better solution . (A bit like dress shopping , we never buy in the first shop but always end up back in the first shop after checking out every other option)

This is going to be a bit long winded but bear with me.

And then there are the Guys , first shop , first rail yep that will do home now to watch the football.

I am not really sure about the advice to TALK because in my experience this always ends in disaster quite simply Guys don't like talking . They don't get it , us Ladies always want to make them like us , we want them to open up , and share, a problem halved and all that.

ED and Men well it is not a combination that goes together, we can make all of the right noises and tell them how much we understand when the truth is we don't understand, how could we ever understand. Men are connected to there Willy's , there whole life revolves around it , it is what defines them as men. Go right back to cave paintings and yes they all have erections.

No wonder your OH doesn't want to TALK about it his sense of failure must be immense. Sometimes we want our men to talk because that is how we deal with things , we force them to be more in tune with there feminine side and then we moan because they are not manly enough. (I don't know how you guys put up with us )

Any way after my long winded natter . It is self confidence that your OH needs way before jumping him in the shower, sometimes taking a back seat and not confronting things will give better results than trying to force an issue. Then of course if that doesn't work then there is always the (make him think it was his idea first routine )

I really hope that you can find a solution , extra advice would be to just let nature take it's course. Life has a funny old way of working out .

BFN

Julie X

Edited by member 01 June 2015 22:49:56

NEVER LAUGH AT A LIVE DRAGON

Thanked 1 time

User
Posted 10 Aug 2015 at 11:04

For the record I don't agree with the cave man theme, art historians disagree on the meaning.

However my main input to an excellent post is and it's over many years of reading the same ED theme - confusion? So we start with partner's saying "it doesn't matter love hugs etc" which is fantastic so guys accept that's how life is so get on with it. Then comes the confusing bit, if it doesn't matter why do we need to see the ED nurse?

So from the outset would it potentially be more productive to say "it does matter for us both so let's go see if anything can be done"?

Just a male input

Ray

Ray

Edited by member 10 Aug 2015 at 11:06  | Reason: Not specified

User
Posted 10 Aug 2015 at 11:21
Ray

I also agree with those words even though I also truly love my SS's post. It is always good to get a female perspective on any given situation with this disease but I have finally got my head around the fact that actually, only a Man can know just how and what this disease means to them as an individual.

Regrettably far too many people go down that hugs and kisses route when inside they are screaming out for more. If that is just down to the embarrasment factor or a need to keep such intimate things behind firmly closed doors then that is even more sad. A wise person once said to me "you might not get if you do not ask, you will never get if you do not try, if you are afraid to try you will never ever know"

In retrospect wish I had paid a lot more attention to that advice on many occasions in my life.

XX

Mo

User
Posted 10 Aug 2015 at 14:50

I think its easy for women to over-generalise men , as it is for men to over-generalise women . Millions of years of survival and yet incompatability , even though love .
I think the "average" man thinks about sex far too much of the time , and yes his life is very much controlled by his willy and its urges. A pretty girl in a summer dress. Its hard for a man to explain to a woman the chain of reaction that that can set off . And yes the average man needs fairly regular sex like air and water.
And there are the extremes of course . Men that think of nothing else at all , and men that are actually not that bothered to be honest . Ive worked a lifetime of 12 hour nightshifts with men and there is not a lot you don't learn , and some acts that are essential in a relationship to some men , are actually repulsive to another man . So we ARE all different . And yes ive met women at both ends of this spectrum aswell .
In my mind , for what it is worth , PCa and loss of sexual function can devastate some men and not so much others depending on what they were like before. Depending where that man was before on the spectrum will affect his recovery and wish to recover. If he/you didn't talk much before or experiment or generally have a laugh , then its going to be harder to resolve yeh!! If you as a couple had a happy adventurous easy-going love life with lots of talk then it is going to be easier to sort.
We had / have an amazing love-life I think with lots of openness etc , but being utterly impotent now HAS taken something huge away from me and it hurts . But im hopeful it will come back . Yes , the "loves and cuddles" conversation is ok and comforting , but in reality the erection is missing , for BOTH of you I think . Neither of you wants it gone .
We are positively working hand-in-hand to go through the process of regaining function , and in the meantime we will compromise in every way to keep each other happy . It will be easy and a laugh I think, but with also some frustration and sadness.
I don't think you can change the person you started out with , and certainly not force them . The only way is to comfort and reassure and show that you are still there for them. Encourage gently forwards ??
I hope this has been even remotely helpful . Im not great with words sometimes
Chris

User
Posted 10 Aug 2015 at 17:02
You seem pretty good with words to me Chris
User
Posted 10 Aug 2015 at 18:56
With regard to Julie's comment "make him think it was his idea first routine", I just want to say that we men know this is a trick you ladies play! We just go along with it because it makes you happy, lol!

As for women talking more than men, I was talking to a friend and he said he hadn't spoken to his wife for 3 weeks. When I asked him why he said "I don't like to interrupt". Lol again!

Just joking!

To be serious though, I do think there is much truth in Julie's post in that as a general rule men are governed by what is in their trousers.

I am very fortunate in that I found Miss Right (first name being always, btw!) She is constantly telling me that she just wants me alive and it doesn't matter about the lack of/change in intimacy. I believe her of course but mentally it is difficult to come to terms with, especially with a pre surgery libido and an attractive woman as a wife.

I learned from a male member of this forum that I can still regard myself as a man, maybe a different man but still a man. However, the male ego within me finds it extremely difficult in accepting I cannot get a erection easily as in pre surgery days, ie when you want one or just when it goes up and down on its own. My wife and I have found a compromise but I can agree Julie is right when she says men and ED are not a good combination.

Just some thoughts from a male member of the forum

 
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