I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
12>

Relationships

User
Posted 21 Apr 2019 at 00:03

My husband has recently been diagnosed and is on hormone treatment ( injections) and starts his radiotherapy in July. His cancer is contained but he has decided not to go down the surgery route which I am in complete agreement with. He has been told he will be on hormone treatment for three years. 

He is 69 this year and I am 65 and our sex life has always been good so I am finding it really hard with this side of things. I know it’s early days, and I love him dearly and am beside him every step of this journey but I’m feeling really lonely right now. Although closeness and cuddles are one thing, when the lack of libido goes, and he really is just not interested, it is just the worst thing. There is just no physical activity at all, not even really cuddling. 

At the moment he has no real side effects other than this so I suppose, and I am, grateful but I just feel like a carer at the moment.

 

 

 

 

User
Posted 23 Apr 2019 at 11:45

I think that your reply is very insightful Peter. I’m not sure why my hubby doesn’t reach out for a cuddle any more, but I’m guessing that it is because it often was a case of one thing led to another and now it doesn’t, so that’s probably why. The loss I’ve felt has been enormous over the years and that’s rarely acknowledged, certainly not by the health professionals, though they don’t mean to be unkind. If I were to sum up, I’ve lost my career, my sex life, my expected future and the husband I once had (he’s still here but he’s different). I try not to let it bother me as there’s no point, I’ve been grieving for nearly nine years and I still have to face the final loss. I adore my husband and don’t want to make his loss (he’s lost so much too) worse, so I never mention any of this to him.

I am a cup half full kind of gal most of the time, but I do recognise that over the years some of these things have tipped me over the edge. I’m deeply grateful that I still have my beloved man, despite his bloody illness, which has ruined our lives. I’m also sad that we have had to live like this, with the sword of Damocles over us and the horrible indignity and pain that he has suffered through these long years.

 

i hate this disease.

love to all of us suffering from it in our own way

Devonmaid xxxxxxx

User
Posted 21 Apr 2019 at 08:01

Hello and welcome Chris

i am not sure if you are using your real name but this forum is searchable on google etc so if it is maybe change it to something else. 

I am sure every partner of a man with Pca goes through this, it’s been a long and lean nearly nine years for us. I was only 54 when my husband was diagnosed and that was that. No kisses, cuddles ever again. A lot of love yes, but no touching of any sort. The HT takes away the wish and desire for the man and unless you have someone who really understands the point of view of the other, then it’s hard for them to consider you and your feelings in that way. In truth I have said many times to my love that it doesn’t matter, when of course, it does matter, nothing like as much as having having him here though and that’s what I hold on to. I’m now 62 and have grieved for the loss of our intimate life over the years, I’m used to it now and m truly grateful to have his presence when so many here have gone during the time I have been here. I don’t say that to sound preachy, it’s just how I’ve coped I suppose, hanging on to the fact that I can still have conversations and enjoy the everyday, whilst many of my fellow travellers down this road cannot.

i don’t know if this helps, I can’t see how it could. We did have one guy here who told me he still “looked after his wife’s interests” as he put it, even though he got no pleasure from it except from seeing her happiness and fulfilment. 

User
Posted 24 Apr 2019 at 12:27

Chris J,

Yes I agree, and I understand your reticence to go on the HT. Absolutely did my head in and I am still suffering. What of this is due to just knowing you have cancer and what is actually due to the HT i don't know. All I know is what I felt and feel now. The HT certainly seems to affect everyone slightly differently.

I never completely lost my libido but seemed to lose the ability to exercise it 😒. But over the months my libido has returned to my normal level and so has my ability to have sex ( i'm pleased to say) . No idea how much the Ciallis has to do with that. But i suspect a lot has to do with confidence and not worrying about not performing. In other words the first time was a bit of a surprise - a pleasant surprise.

I am also working hard to offset any effects on muscle/bone development. Its an up and down journey as any illness or injury seems to take forever to recover from. But it feels so good to exercise so it must be good for you.... I've also lost nearly a stone now   - again good for the ego , which needs a polish up once you get this disease. So Tough Mudder on 4th May here i come 😬.

Just gotta find another job now as I finish this Friday - a bit earlier than planned. Agency work sucks - I should know by now after over 40 years ! 

Anyway, good luck to all out there, and like you Chris J i love reading about all the different journeys people are making.

Phil

User
Posted 21 Apr 2019 at 12:43
It makes me very sad to read your story. I had surgery at 48 and was impotent mostly for two years. But I had loads of desire still and we muddled through. I’m now 4 years post op and fully recovered and have always had a huge libido. Unfortunately my cancer never got cured and it seems that I soon will need Chemo and HT. When I read any mans or woman’s story on the utter lack of libido it just makes me not want further treatment tbh , and that may be the way I go. There is a Facebook page that is women only for prostate cancer where you can vent or seek help or advice. I’ll ask my wife. Stay strong , and have a really serious talk with him. Don’t bottle it up

If life gives you lemons , then make lemonade

User
Posted 21 Apr 2019 at 14:54
I think you may also need to give him some time to come to terms with his mortality, it's not just about hormones. The stress of the situation will be impacting things too.

I would try explaining your needs to him and be brutally honest.

User
Posted 21 Apr 2019 at 19:02

It honestly doesn't bother me in the slightest, Chris. Am I aware of having lost my libido as a result of HT? Yes, of course! Do I care? No. The desire is simply non-existent now.

I guess it's one of those things that's more important to some men than others.

Cheers,

Chris

 

Edited by member 21 Apr 2019 at 19:02  | Reason: Not specified

User
Posted 24 Apr 2019 at 15:49

Hi Phil

What a fabulous, encouraging post. I thank you so much for putting my faith back in human nature and resilience. Allen and I have chatted over the past couple of days about lots of things and things are certainly better than they have been. I have told him that his irritability has hurt me and he agreed that he’s noticed that he has been short tempered and he’ll take that on board and wasn’t even aware that he had been distant with me with regards to the closeness between us. 

I’m so pleased that I posted and I’m happy if it has helped others too. 

Chris J, enjoy your cruise 👏🛳 and Phil, you go go go in the tough mudder in May🏃‍♂️🏃‍♂️

Chris 😻

User
Posted 25 Apr 2019 at 06:50
I reported his hilarity to the moderator Chris

If life gives you lemons , then make lemonade

User
Posted 21 Apr 2019 at 08:39

I have total erectile dysfunction following my prostatectomy nearly a year ago, although I am fully continent.

Her Loveliness, my fiancée of 38 years is quite content, if not relieved 😉, and we are still best friends.

Best of luck!

Cheers, John.

Edited by member 21 Apr 2019 at 08:40  | Reason: Not specified

User
Posted 21 Apr 2019 at 17:10
I think the kindest thing you can do for your own peace of mind is to keep reminding yourself that it isn’t something about you and nor is it something that he can control or will even be aware of - that bit of his brain has simply been switched off.

CJ and others find this hard to imagine but when it happens, it rarely causes any distress for the man because he doesn’t even know what he isn’t thinking anymore.

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

User
Posted 21 Apr 2019 at 18:10

Lyn is so right

My darling hubby has never once thought about this since diagnosis, it just doesn’t exist for him so it doesn’t for me (it does but what can I do, don’t answer that). There is no one I have ever been able to talk to about it, certainly not our family (yuck, from their point of view). I’ve simply had to accept it and cope. I don’t have any answers, just sympathising really. I know how it feels. 

Lots of love Devonmaid xxxxx

User
Posted 21 Apr 2019 at 19:59
Hi cat lady and welcome to the group of wives who are struggling with the same sadness and feeling of loss, due to the effects of hormone treatment.

My husband and I(we see this as a problem for both of us) are further down the treatment path than you, and in all honesty I don't think it has got any easier after nearly 3 years.

We are slightly older than you. I have reached the grand old age of 73, and he is 70 next month, and it would be fair to say our sex life had tailed off a bit before his diagnosis, but was still an important part of our lives. Since he began HT in 2016 he has had no desire at all. I think we have a close relationship still, but like your husband he has no wish to kiss and cuddle, or even to walk hand in hand. I think he has some idea that something is missing, and I know he makes a real effort to show affection to me, but we are both aware of the missing link in our relationship, and I think it does cause some tension. When he was diagnosed and the possible effects of hormone therapy and radiotherapy were explained to us, I felt he would be much more effected by the loss of sexual feeling than I would, but at that time we didn't understand how completely his sexual desire would disappear. We live in hope that some desire will reappear once hormone treatment finishes, we tried to persuade our oncologist that 2 years of treatment would be enough, having read that some people are saying the three year programme may not be all be necessary, but no luck there, and having him here is by far the most important thing.

I'm sorry I can't offer anything more positive, but I can assure from what I have read on here you are not alone. It does help if you can find someone to talk to, but it is not easy to talk to family as even in these much more open times, it is a very sensitive matter to discuss. I think all men going through Prostate Cancer feel a loss of masculinity, and sometimes it feels like treading on eggshells!

The only real suggestion I would make is to talk to each other as much as possible, and concentrate on all the things you can share.

Best Wishes

Fran

User
Posted 22 Apr 2019 at 00:16
You mention OH is techy at the moment and for some men it's not just sexual feelings but HT can also cause mood swings and for men to react differently in general.
Barry
User
Posted 22 Apr 2019 at 10:27

Originally Posted by: Online Community Member
 but in my pea-sized brain the marriage seems almost over in many ways with no intimacy or closeness. Just seems like existence rather than life to me and it’s not ticking my boxes tbh. Watch this space ....

This describes our "existence" at the moment.
I'm 2.5 years post-op & RT. Finished Bicalutamide in February.
We were great......Any "marriage" is now over. We are just two people living in the same house.
I've changed from one of those blokes who people rang when they were in a crisis, a useful, helpful bloke.
I'm apathetic.
Angry all the time, but apathetic.
Half of me wishes I'd never mentioned my occasional need for an extra pee to my Doctor.
I'd rather be remembered as what I was than what I've become.
Rant over......Good luck to you all with your choices but......think very carefully how the simple choice to accept treatment will affect you.
My life has been impacted in many, many ways.
With the exception of it being extended, very few positives.
Is the total number of days you've lived any indication to the point of your life?

User
Posted 22 Apr 2019 at 23:52

I've no experience with hormone treatment but when I was diagnosed I became anxious and lost desire for quite a while.  Sometimes I could be lost in thought and perhaps more snappy than usual.  Also I did have a lot of thoughts about how she'd be if I wasn't around. 

What I find hard to understand is that most are saying in effect hormones robs you not just of libido but of basic human empathy if you don't want to touch your wife. You don't need sexual feelings to want to touch someone.  It makes me wonder how this is so and whether it's more about anxiety or feeling a need not to be a problem.

As someone else wrote it is a form of grieving.  Grieving is a staged process that normally you move through and adapt.  If you get stuck on a stage there are ways to get past it.  It must be difficult if you're ill and might not get better but even so there must still be stages of adaptation.   I'm perhaps wrong about the empathy and stages for this situation but that's how it seems to me. Regards Peter

User
Posted 24 Apr 2019 at 08:05
Oh heavens, it’s so depressing to think that there are men out there with this that really don’t care if their wives stay or leave.

It’s one thing not to have any sexual desire but not to want to share their lives, no matter how difficult is just so very sad. 😰

I will battle to ensure my relationship continues In whatever way it can and hopefully we will always want one another in our lives.

Chris

User
Posted 24 Apr 2019 at 11:32

Hello Chris,

I think maybe you need to allow some time for the effects on Alan's mind to settle down. It is early days for you both yet. But saying that I don’t think you should settle for a life without sex just yet ! There are many ways to skin a cat and you both need to work together.

I went on HT Jan ’18 and am still on till this October fingers crossed. I had the HD Brachy and RT (23) as well, finishing last August. I am 64 and my wife is 55 so I’m very conscious that I need to think of her needs through this.

The HT affected me far more than the Brachy or RT. The HT, and probably the diagnosis initially caused me to unlock some boxes from a difficult childhood and so I really struggled at the beginning. Luckily I have a good counselor. But I did feel I needed constant comfort from my wife so I still needed the cuddles etc. In fact so much so that she wasn’t used to it and needed to tell me to back off a little! I had never cried in my whole life before and then suddenly I cry at the drop of a hat and wanted a hug…I had suppressed emotions from my childhood and suddenly they are all there - i was overwhelmed.....

I did try too hard at the beginning with regard to the sex and that actually wasn’t helping….I found the 100mg Viagra was great but is for a planned event and we just didn’t get on with it. So eventually settled on 5mg daily Cialis and can now , even whilst on the HT, have normal full sex. Maybe this is unusual while still on the HT I don’t know, but even before we got back to full sex I did my best to satisfy my wife. I have also luckily regained the desire and libido. So I wonder if a lot of the loss of libido is in the mind. The HT does devastate the mind and I know I will be seeing my counselor for some time yet……….there are no easy answers.

Your OH will likely be terrified of the future – I know I am. I had Gleason 9 so quite likely to have recurrence but you have to learn to not dwell on that and enjoy what you have.

Maybe you can find some time to talk about your needs to your OH. Although I think you mentioned him being very private which makes it more difficult. But then we never talked about intimate stuff before but we have discovered that we have to do it now.

You’ve turned off the motorway and are winding along a bumpy country lane now , but you might find something along that route that you would never have come across on the motorway. I feel we are closer now than we have ever been.

I hope you can find a route that suits you both,

Good luck.

Phil

User
Posted 24 Apr 2019 at 11:59
This is just such a fantastic useful thread with great input from so many people. My wife and I have been grateful reading through this as I will soon have to make a decision on HT. I guess no harm in at least trying it ?

If life gives you lemons , then make lemonade

User
Posted 24 Apr 2019 at 12:41

There were some earlier threads on this subject and a couple of long term forum members, both with spread managed to retain their libido and ability to have sex. They are fairly unusual but I think they key may be to address this as soon as possible upon diagnosis. I remember out specialist nurse asking us if we wanted help, and at the time we were so shocked (Gleason 10, spread to bones and lymph) we both said no. It wasn’t uppermost in our minds, survival was the only thing that mattered. The issue was never mentioned again sadly but John has survived nearly nine years, although frankly it’s an impossibility now for sure. I do wonder what might have been possible had we taken action back in the early days though.

A great thread, it’s the reality for many of us, in our case love overcomes it all, I’d never be unfaithful or leave my lovely husband. But I do recognise that this way of life may not be enough for everyone and there are ways to cope. The answer is to talk about it (we don’t as I don’t want to heap misery upon misery), if I could go back and change that, I would.

Thanks Catlady for raising this important issue.

love Devonmaid  

User
Posted 24 Apr 2019 at 13:00
I think yet again reading this , that communication as a couple is utterly key to a lot of this. Literally being able to face each other and put all your cards on the table and work out a plan. Many men lock themselves in a dark room mentally when their performance is destroyed by treatment , and their lovely wives are too scared to bring it up. It just causes more arguments and more stress and more ‘ shame’. Luckily my wife and I can talk about absolutely everything, and because of that 4 yrs on everything is back to normal after a shedload of effort from us both. Only things aren’t normal as I’m incurable. At what point I don’t know but further scans to check abdomen spread on 9th May , then a cruise , then results. I’m just praying I get the cruise , then work the rest out later. Goalhanger you have given me hope which I thank you for

If life gives you lemons , then make lemonade

User
Posted 24 Apr 2019 at 13:21

Absolutely agree, communication is key. It's not easy if you've never talked about this stuff before but start off lightly and work your way towards the deeper stuff.

ChrisJ i hope you can enjoy the cruise , you deserve it and hopefully the news on your return is not as bad as you imagine. Best of luck..

I had my bone scan and went on holiday to Finland and managed to virtually forget the PCa. Unfortunately my wife couldn't get it out of her mind.....luckily all was OK on our return and no mets.

Lets not let this damned disease destroy our humanity like it destroys our bodies.

Phil

User
Posted 24 Apr 2019 at 16:19
Chris, that is great !!! Just share and talk and you’ll find a way I promise. That’s what a marriage is after all heh — constant compromise. Looking forwards to things working out for you x

If life gives you lemons , then make lemonade

User
Posted 24 Apr 2019 at 21:18

Hi Cat lady

since I responded to your first post, I have worried that perhaps my reply didn't offer you any reassurance, and that was not my intention at all, and it did seem that several other replies were along the same lines. However one or two other comments have,I think, been more positive, and I would like to stress that while HT and it's effects have altered our lives in ways we would not wish, we have really tried to share the prostate cancer "journey", talking to each other in a way we perhaps didn't before the diagnosis. It hasn't always been easy, my husband, like yours, is a very private man and doesn't find it easy to talk about his feelings, but I hope he has learnt not to shut me out too much, and I try not to "nag" too much.  That said every now and then I do loose my cool, and feel the need to put my foot down when he is being especially stubborn or withdrawn!

The past three years have been a rollercoaster of emotions, fear and anxiety, but we have also had a lot of fun and laughter, and while the loss of our sex life is a deep regret, we know we love each other and have much to be grateful for.

I hope you are able to reach the same place.

Best Wishes

Fran

 

User
Posted 25 Apr 2019 at 18:45
DR,

When you reply to a post that's some distance up the thread it's helpful to use the "Quote" button so that people know what you're actually replying to.

All the best,

Chris

Show Most Thanked Posts
User
Posted 21 Apr 2019 at 08:01

Hello and welcome Chris

i am not sure if you are using your real name but this forum is searchable on google etc so if it is maybe change it to something else. 

I am sure every partner of a man with Pca goes through this, it’s been a long and lean nearly nine years for us. I was only 54 when my husband was diagnosed and that was that. No kisses, cuddles ever again. A lot of love yes, but no touching of any sort. The HT takes away the wish and desire for the man and unless you have someone who really understands the point of view of the other, then it’s hard for them to consider you and your feelings in that way. In truth I have said many times to my love that it doesn’t matter, when of course, it does matter, nothing like as much as having having him here though and that’s what I hold on to. I’m now 62 and have grieved for the loss of our intimate life over the years, I’m used to it now and m truly grateful to have his presence when so many here have gone during the time I have been here. I don’t say that to sound preachy, it’s just how I’ve coped I suppose, hanging on to the fact that I can still have conversations and enjoy the everyday, whilst many of my fellow travellers down this road cannot.

i don’t know if this helps, I can’t see how it could. We did have one guy here who told me he still “looked after his wife’s interests” as he put it, even though he got no pleasure from it except from seeing her happiness and fulfilment. 

User
Posted 21 Apr 2019 at 08:39

I have total erectile dysfunction following my prostatectomy nearly a year ago, although I am fully continent.

Her Loveliness, my fiancée of 38 years is quite content, if not relieved 😉, and we are still best friends.

Best of luck!

Cheers, John.

Edited by member 21 Apr 2019 at 08:40  | Reason: Not specified

User
Posted 21 Apr 2019 at 11:35

Thankyou both for being so kind. 

I am devoted to my husband and probably just feeling a bit sorry for myself as the reality really sinks in. I know he still adores me as I do him and even though we are older and yes that part of a relationship IS still important lol, I never really thought it would effect my feelings as much as it has started to. 

He is tetchy at the moment too and quite snappy which of course I totally get and of course this not about ‘me’ but I just worry about stuff. 

Difficult to talk to the family about intimate matters that’s for sure! 

User
Posted 21 Apr 2019 at 12:32

I think that the thing that upsets me the most is actually not the sexual and  physical act but the complete indifference to any form of togetherness. It’s as much as he can do to sit next to me or touch me and not because he’s in a mood or tetchy just because he now has absolutely no desire for any involvement in any way and doesn’t think this is unusual. He’s out and about chatting and living his life as normal in every other way ( which of course  is great but if I said it doesn’t matter then I would be lying. 😒

User
Posted 21 Apr 2019 at 12:43
It makes me very sad to read your story. I had surgery at 48 and was impotent mostly for two years. But I had loads of desire still and we muddled through. I’m now 4 years post op and fully recovered and have always had a huge libido. Unfortunately my cancer never got cured and it seems that I soon will need Chemo and HT. When I read any mans or woman’s story on the utter lack of libido it just makes me not want further treatment tbh , and that may be the way I go. There is a Facebook page that is women only for prostate cancer where you can vent or seek help or advice. I’ll ask my wife. Stay strong , and have a really serious talk with him. Don’t bottle it up

If life gives you lemons , then make lemonade

User
Posted 21 Apr 2019 at 14:54
I think you may also need to give him some time to come to terms with his mortality, it's not just about hormones. The stress of the situation will be impacting things too.

I would try explaining your needs to him and be brutally honest.

User
Posted 21 Apr 2019 at 17:10
I think the kindest thing you can do for your own peace of mind is to keep reminding yourself that it isn’t something about you and nor is it something that he can control or will even be aware of - that bit of his brain has simply been switched off.

CJ and others find this hard to imagine but when it happens, it rarely causes any distress for the man because he doesn’t even know what he isn’t thinking anymore.

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

User
Posted 21 Apr 2019 at 18:10

Lyn is so right

My darling hubby has never once thought about this since diagnosis, it just doesn’t exist for him so it doesn’t for me (it does but what can I do, don’t answer that). There is no one I have ever been able to talk to about it, certainly not our family (yuck, from their point of view). I’ve simply had to accept it and cope. I don’t have any answers, just sympathising really. I know how it feels. 

Lots of love Devonmaid xxxxx

User
Posted 21 Apr 2019 at 18:23
I just don’t get it !! Many men on HT seem very aware and comment on their lack of libido .....

I know I’ve not experienced it ( if/yet ) , but surely it doesn’t mess with your head that much ?? Not to the extent that you can’t realise your wife is severely missing out. If my wife asks me to put a shelf up then I do , put the bins out then I do. May I have an orgasm , then surely I’d try. Please don’t anyone think I’m judging , because we are all different, but in my pea-sized brain the marriage seems almost over in many ways with no intimacy or closeness. Just seems like existence rather than life to me and it’s not ticking my boxes tbh. Watch this space ....

If life gives you lemons , then make lemonade

User
Posted 21 Apr 2019 at 19:02

It honestly doesn't bother me in the slightest, Chris. Am I aware of having lost my libido as a result of HT? Yes, of course! Do I care? No. The desire is simply non-existent now.

I guess it's one of those things that's more important to some men than others.

Cheers,

Chris

 

Edited by member 21 Apr 2019 at 19:02  | Reason: Not specified

User
Posted 21 Apr 2019 at 19:07
The point CJ is that at the moment, you might notice the bins need putting out and do it because a) you want b) you know E would want you to or c) you fail to notice but she gets irritated and asks you to. With no libido, you forget the bins even exist, so wouldn't think to do it yourself and if E asked you to you would but it might seem a bit pointless, or even smelly and repulsive.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Apr 2019 at 19:15
Lol , that needs re-phrasing :-))

If life gives you lemons , then make lemonade

User
Posted 21 Apr 2019 at 19:59
Hi cat lady and welcome to the group of wives who are struggling with the same sadness and feeling of loss, due to the effects of hormone treatment.

My husband and I(we see this as a problem for both of us) are further down the treatment path than you, and in all honesty I don't think it has got any easier after nearly 3 years.

We are slightly older than you. I have reached the grand old age of 73, and he is 70 next month, and it would be fair to say our sex life had tailed off a bit before his diagnosis, but was still an important part of our lives. Since he began HT in 2016 he has had no desire at all. I think we have a close relationship still, but like your husband he has no wish to kiss and cuddle, or even to walk hand in hand. I think he has some idea that something is missing, and I know he makes a real effort to show affection to me, but we are both aware of the missing link in our relationship, and I think it does cause some tension. When he was diagnosed and the possible effects of hormone therapy and radiotherapy were explained to us, I felt he would be much more effected by the loss of sexual feeling than I would, but at that time we didn't understand how completely his sexual desire would disappear. We live in hope that some desire will reappear once hormone treatment finishes, we tried to persuade our oncologist that 2 years of treatment would be enough, having read that some people are saying the three year programme may not be all be necessary, but no luck there, and having him here is by far the most important thing.

I'm sorry I can't offer anything more positive, but I can assure from what I have read on here you are not alone. It does help if you can find someone to talk to, but it is not easy to talk to family as even in these much more open times, it is a very sensitive matter to discuss. I think all men going through Prostate Cancer feel a loss of masculinity, and sometimes it feels like treading on eggshells!

The only real suggestion I would make is to talk to each other as much as possible, and concentrate on all the things you can share.

Best Wishes

Fran

User
Posted 21 Apr 2019 at 20:21

Thank you Fran and thanks to everyone who has responded. 

It really helps to discuss things and I’ve found this helpful if just a little sad.

Chris 😊 

User
Posted 21 Apr 2019 at 21:40
I have two neutered Tom cats, both rescued, they are happy, seem to have no memory of their previous exploits. My husband was the same on HT, now it’s finished he’s beginning to have some sexual feelings, unlike the Tom cats..... who seem to have no previous memories. This is an analogy, not intended to offend. HT does this... like my neutered cats.

User
Posted 22 Apr 2019 at 00:16
You mention OH is techy at the moment and for some men it's not just sexual feelings but HT can also cause mood swings and for men to react differently in general.
Barry
User
Posted 22 Apr 2019 at 10:27

Originally Posted by: Online Community Member
 but in my pea-sized brain the marriage seems almost over in many ways with no intimacy or closeness. Just seems like existence rather than life to me and it’s not ticking my boxes tbh. Watch this space ....

This describes our "existence" at the moment.
I'm 2.5 years post-op & RT. Finished Bicalutamide in February.
We were great......Any "marriage" is now over. We are just two people living in the same house.
I've changed from one of those blokes who people rang when they were in a crisis, a useful, helpful bloke.
I'm apathetic.
Angry all the time, but apathetic.
Half of me wishes I'd never mentioned my occasional need for an extra pee to my Doctor.
I'd rather be remembered as what I was than what I've become.
Rant over......Good luck to you all with your choices but......think very carefully how the simple choice to accept treatment will affect you.
My life has been impacted in many, many ways.
With the exception of it being extended, very few positives.
Is the total number of days you've lived any indication to the point of your life?

User
Posted 22 Apr 2019 at 10:49

I’m taking deep breaths at the moment I have to say. In a way it’s helpful to know that others are on the same position and if I’m honest its the bad tempered snappy ness that’s most getting to me.

Last night we did cuddle up together and it was lovely so I’m going to try and get through each  day  as best I can, tell him off if he’s miserable with me for no real reason and look forward to a cuddle if and when. I’m lucky that I have four daughters and 8 grandchildren who I adore so it looks like they will be getting all the love I have to give. 

Allen is my soul mate and hopefully we will muddle through the bad days and laugh in the good ones.

Its really been a great help just by writing it down and having support from people who understand.

Btw I have joined the women’s Facebook prostate group which is  also fabulous.

Chris 🙂 

User
Posted 22 Apr 2019 at 11:48

Originally Posted by: Online Community Member

 if I’m honest its the bad tempered snappy ness that’s most getting to me.

 

Chris 🙂 

We're slightly younger than you and your husband.
My wife is 59, I'm 56.
I have never been, and I have never, had any intention of being unfaithful to her.
What I can't help myself doing now is......Every single time I see any woman remotely attractive to me, I just think to myself, "somebody else I'll never / can't have sex with". I imagine anybody I might be embarking on a relationship with, I would have to explain the incontinence pads and wearing night pants. Again......I would never make any attempt to do so anyway but......Now, it is forbidden to me.

I feel I've been robbed by this disease and the life-saving treatment I've been given. I just see the negatives and......the point I'm trying clumsily to get across is......

Your man may feel the same......perhaps robbed of stuff that isn't really important, but gone nevertheless.

He may just be thinking about all the negatives all the time. He snaps when you're interrupting his negative thoughts.

Possibly?

Ian.

Edited by member 22 Apr 2019 at 11:50  | Reason: Grammar.

User
Posted 22 Apr 2019 at 12:30

 

 We are older and have been together over 20 years ( second marriages for us both so we’ve had struggles over the years) but have only married in December 2018. It’s ironic that this should have reared its ugly head  within 6 weeks of being married😔

Because he is older and the cancer is locally contained, Allen has not had surgery and doesn’t intend to because the

 

incontinence was a possible side effect he just wasn’t prepared to go through no matter what. The person that he is, he knew that this would completely effect both his working ( he still works full time and enjoys what he does)  and our social life. He’s a very private man and just would not cope. He also manages to put things into ‘boxes’ and worries about one thing at a time. I just wish I had that ability.

He has been on hormone therapy since February, has had two Zoladex implants and begins his 37 RT treatments in July. 

The Oncologist is optimistic that they will be able to cure him but he will need to stay on HT for a further three years. At his age he feels that he is happy to take the risk to stay relatively fit with a ‘normal’ lifestyle.He relies on me totally to research and discuss everything with both him and the doctors, it’s as though he’s passed that part onto me because this is what I do in life!! I’m happy to do it all but I guess I’m just tired ..... already ..... and we really have only just started the journey .....

Chris🤦‍♀️

 

 

 

Edited by member 22 Apr 2019 at 12:34  | Reason: Adding text

User
Posted 22 Apr 2019 at 20:45
I would challenge the requirement for HT beyond 18 months. Research has shown little benefit for the additional 18 months of HT especially it the onco is confident of a complete remission.

Something to ask your oncologist

User
Posted 22 Apr 2019 at 21:18

Originally Posted by: Online Community Member
I would challenge the requirement for HT beyond 18 months. Research has shown little benefit for the additional 18 months of HT especially it the onco is confident of a complete remission.

Something to ask your oncologist

This is something I'm planning on asking my consultant tomorrow.
I've read some papers on this, but they don't agree with each other (as you might expect).

For patients at high risk of failure of radial treatments (Gleason 8-10, or PSA >= 20 at diagnosis, or stage T3a or higher), some papers think HT longer than 18 months gives a significant benefit. The downside is it also significantly reduces the chance of full recovery from HT (although it's possible less than full recovery from HT also aids survival).

I've also found a older paper suggesting if you can get the pre-RT PSA to <= 0.1 with HT, then survival is improved and HT afterwards may not be needed (although this wasn't in the context of high risk cases). I might ask if I can aim for this level before RT, even if they do insist on me continuing with HT afterwards, as I'm sure they will.

User
Posted 22 Apr 2019 at 21:48
Be careful not to conflate different issues. Optimal HT with radical RT is different to optimal HT with salvage or adjuvant RT following failed surgery. Best timescale for T1 / T2 low or medium Gleason is much shorter than for T3 / high Gleason

Some oncos don't even prescribe HT to men having adjuvant or salvage RT, or to men having radical brachytherapy., HIFU etc. Some seem to recommend only 6 months for salvage RT (3 before, 3 after) and I note a recently joined member is having 6 months before and none after. Oncos will usually have a rationale for whatever they are recommending so I suppose the thing I would want to know is "why do you think this is the right amount of HT in this case?"

Also worth remembering that no-one is forced to do what the onco says; John stopped the HT early because he hated it. Si_ness has been a model of how to work in partnership with the onco to balance disease control with quality of life - Alathays, George and TopGun have all demonstrated the benefits of same approach over the years.

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

User
Posted 22 Apr 2019 at 23:52

I've no experience with hormone treatment but when I was diagnosed I became anxious and lost desire for quite a while.  Sometimes I could be lost in thought and perhaps more snappy than usual.  Also I did have a lot of thoughts about how she'd be if I wasn't around. 

What I find hard to understand is that most are saying in effect hormones robs you not just of libido but of basic human empathy if you don't want to touch your wife. You don't need sexual feelings to want to touch someone.  It makes me wonder how this is so and whether it's more about anxiety or feeling a need not to be a problem.

As someone else wrote it is a form of grieving.  Grieving is a staged process that normally you move through and adapt.  If you get stuck on a stage there are ways to get past it.  It must be difficult if you're ill and might not get better but even so there must still be stages of adaptation.   I'm perhaps wrong about the empathy and stages for this situation but that's how it seems to me. Regards Peter

User
Posted 23 Apr 2019 at 11:45

I think that your reply is very insightful Peter. I’m not sure why my hubby doesn’t reach out for a cuddle any more, but I’m guessing that it is because it often was a case of one thing led to another and now it doesn’t, so that’s probably why. The loss I’ve felt has been enormous over the years and that’s rarely acknowledged, certainly not by the health professionals, though they don’t mean to be unkind. If I were to sum up, I’ve lost my career, my sex life, my expected future and the husband I once had (he’s still here but he’s different). I try not to let it bother me as there’s no point, I’ve been grieving for nearly nine years and I still have to face the final loss. I adore my husband and don’t want to make his loss (he’s lost so much too) worse, so I never mention any of this to him.

I am a cup half full kind of gal most of the time, but I do recognise that over the years some of these things have tipped me over the edge. I’m deeply grateful that I still have my beloved man, despite his bloody illness, which has ruined our lives. I’m also sad that we have had to live like this, with the sword of Damocles over us and the horrible indignity and pain that he has suffered through these long years.

 

i hate this disease.

love to all of us suffering from it in our own way

Devonmaid xxxxxxx

User
Posted 23 Apr 2019 at 20:09

Hi I am 8 years down  this road ,13 years between us , I am 70 my lovely wife is 57 , , separate bedrooms no sex , no desire 
I have encouraged her to go on girly holidays , she has two a year ,we have an elephant in the room , if she wanted to leave me she could have everything I am not bothered , or if she asked me to leave I would , but she would always have my best wishs , my cancer has returned eighteen months ago so I know I am running out of time 
Do I love her YES 

Edited by member 23 Apr 2019 at 20:10  | Reason: Not specified

User
Posted 24 Apr 2019 at 08:05
Oh heavens, it’s so depressing to think that there are men out there with this that really don’t care if their wives stay or leave.

It’s one thing not to have any sexual desire but not to want to share their lives, no matter how difficult is just so very sad. 😰

I will battle to ensure my relationship continues In whatever way it can and hopefully we will always want one another in our lives.

Chris

User
Posted 24 Apr 2019 at 08:14

Wish mine would go out tonight so I can watch the Manchester Derby game in peace.

Edited by member 24 Apr 2019 at 08:15  | Reason: typo

User
Posted 24 Apr 2019 at 11:32

Hello Chris,

I think maybe you need to allow some time for the effects on Alan's mind to settle down. It is early days for you both yet. But saying that I don’t think you should settle for a life without sex just yet ! There are many ways to skin a cat and you both need to work together.

I went on HT Jan ’18 and am still on till this October fingers crossed. I had the HD Brachy and RT (23) as well, finishing last August. I am 64 and my wife is 55 so I’m very conscious that I need to think of her needs through this.

The HT affected me far more than the Brachy or RT. The HT, and probably the diagnosis initially caused me to unlock some boxes from a difficult childhood and so I really struggled at the beginning. Luckily I have a good counselor. But I did feel I needed constant comfort from my wife so I still needed the cuddles etc. In fact so much so that she wasn’t used to it and needed to tell me to back off a little! I had never cried in my whole life before and then suddenly I cry at the drop of a hat and wanted a hug…I had suppressed emotions from my childhood and suddenly they are all there - i was overwhelmed.....

I did try too hard at the beginning with regard to the sex and that actually wasn’t helping….I found the 100mg Viagra was great but is for a planned event and we just didn’t get on with it. So eventually settled on 5mg daily Cialis and can now , even whilst on the HT, have normal full sex. Maybe this is unusual while still on the HT I don’t know, but even before we got back to full sex I did my best to satisfy my wife. I have also luckily regained the desire and libido. So I wonder if a lot of the loss of libido is in the mind. The HT does devastate the mind and I know I will be seeing my counselor for some time yet……….there are no easy answers.

Your OH will likely be terrified of the future – I know I am. I had Gleason 9 so quite likely to have recurrence but you have to learn to not dwell on that and enjoy what you have.

Maybe you can find some time to talk about your needs to your OH. Although I think you mentioned him being very private which makes it more difficult. But then we never talked about intimate stuff before but we have discovered that we have to do it now.

You’ve turned off the motorway and are winding along a bumpy country lane now , but you might find something along that route that you would never have come across on the motorway. I feel we are closer now than we have ever been.

I hope you can find a route that suits you both,

Good luck.

Phil

User
Posted 24 Apr 2019 at 11:59
This is just such a fantastic useful thread with great input from so many people. My wife and I have been grateful reading through this as I will soon have to make a decision on HT. I guess no harm in at least trying it ?

If life gives you lemons , then make lemonade

User
Posted 24 Apr 2019 at 12:27

Chris J,

Yes I agree, and I understand your reticence to go on the HT. Absolutely did my head in and I am still suffering. What of this is due to just knowing you have cancer and what is actually due to the HT i don't know. All I know is what I felt and feel now. The HT certainly seems to affect everyone slightly differently.

I never completely lost my libido but seemed to lose the ability to exercise it 😒. But over the months my libido has returned to my normal level and so has my ability to have sex ( i'm pleased to say) . No idea how much the Ciallis has to do with that. But i suspect a lot has to do with confidence and not worrying about not performing. In other words the first time was a bit of a surprise - a pleasant surprise.

I am also working hard to offset any effects on muscle/bone development. Its an up and down journey as any illness or injury seems to take forever to recover from. But it feels so good to exercise so it must be good for you.... I've also lost nearly a stone now   - again good for the ego , which needs a polish up once you get this disease. So Tough Mudder on 4th May here i come 😬.

Just gotta find another job now as I finish this Friday - a bit earlier than planned. Agency work sucks - I should know by now after over 40 years ! 

Anyway, good luck to all out there, and like you Chris J i love reading about all the different journeys people are making.

Phil

User
Posted 24 Apr 2019 at 12:41

There were some earlier threads on this subject and a couple of long term forum members, both with spread managed to retain their libido and ability to have sex. They are fairly unusual but I think they key may be to address this as soon as possible upon diagnosis. I remember out specialist nurse asking us if we wanted help, and at the time we were so shocked (Gleason 10, spread to bones and lymph) we both said no. It wasn’t uppermost in our minds, survival was the only thing that mattered. The issue was never mentioned again sadly but John has survived nearly nine years, although frankly it’s an impossibility now for sure. I do wonder what might have been possible had we taken action back in the early days though.

A great thread, it’s the reality for many of us, in our case love overcomes it all, I’d never be unfaithful or leave my lovely husband. But I do recognise that this way of life may not be enough for everyone and there are ways to cope. The answer is to talk about it (we don’t as I don’t want to heap misery upon misery), if I could go back and change that, I would.

Thanks Catlady for raising this important issue.

love Devonmaid  

User
Posted 24 Apr 2019 at 13:00
I think yet again reading this , that communication as a couple is utterly key to a lot of this. Literally being able to face each other and put all your cards on the table and work out a plan. Many men lock themselves in a dark room mentally when their performance is destroyed by treatment , and their lovely wives are too scared to bring it up. It just causes more arguments and more stress and more ‘ shame’. Luckily my wife and I can talk about absolutely everything, and because of that 4 yrs on everything is back to normal after a shedload of effort from us both. Only things aren’t normal as I’m incurable. At what point I don’t know but further scans to check abdomen spread on 9th May , then a cruise , then results. I’m just praying I get the cruise , then work the rest out later. Goalhanger you have given me hope which I thank you for

If life gives you lemons , then make lemonade

User
Posted 24 Apr 2019 at 13:21

Absolutely agree, communication is key. It's not easy if you've never talked about this stuff before but start off lightly and work your way towards the deeper stuff.

ChrisJ i hope you can enjoy the cruise , you deserve it and hopefully the news on your return is not as bad as you imagine. Best of luck..

I had my bone scan and went on holiday to Finland and managed to virtually forget the PCa. Unfortunately my wife couldn't get it out of her mind.....luckily all was OK on our return and no mets.

Lets not let this damned disease destroy our humanity like it destroys our bodies.

Phil

User
Posted 24 Apr 2019 at 15:49

Hi Phil

What a fabulous, encouraging post. I thank you so much for putting my faith back in human nature and resilience. Allen and I have chatted over the past couple of days about lots of things and things are certainly better than they have been. I have told him that his irritability has hurt me and he agreed that he’s noticed that he has been short tempered and he’ll take that on board and wasn’t even aware that he had been distant with me with regards to the closeness between us. 

I’m so pleased that I posted and I’m happy if it has helped others too. 

Chris J, enjoy your cruise 👏🛳 and Phil, you go go go in the tough mudder in May🏃‍♂️🏃‍♂️

Chris 😻

User
Posted 24 Apr 2019 at 16:19
Chris, that is great !!! Just share and talk and you’ll find a way I promise. That’s what a marriage is after all heh — constant compromise. Looking forwards to things working out for you x

If life gives you lemons , then make lemonade

User
Posted 24 Apr 2019 at 21:18

Hi Cat lady

since I responded to your first post, I have worried that perhaps my reply didn't offer you any reassurance, and that was not my intention at all, and it did seem that several other replies were along the same lines. However one or two other comments have,I think, been more positive, and I would like to stress that while HT and it's effects have altered our lives in ways we would not wish, we have really tried to share the prostate cancer "journey", talking to each other in a way we perhaps didn't before the diagnosis. It hasn't always been easy, my husband, like yours, is a very private man and doesn't find it easy to talk about his feelings, but I hope he has learnt not to shut me out too much, and I try not to "nag" too much.  That said every now and then I do loose my cool, and feel the need to put my foot down when he is being especially stubborn or withdrawn!

The past three years have been a rollercoaster of emotions, fear and anxiety, but we have also had a lot of fun and laughter, and while the loss of our sex life is a deep regret, we know we love each other and have much to be grateful for.

I hope you are able to reach the same place.

Best Wishes

Fran

 

User
Posted 24 Apr 2019 at 21:42

Oh Fran, your first reply was welcomed and actually helped a lot especially as it was my first post. 

Everyone who has replied to it have given me huge insight into how other people are coping with this horrid condition and I appreciate every last piece of advice,  help and support. I certainly dont feel as isolated as I did this time last week!! 

Chris 😺

User
Posted 24 Apr 2019 at 23:04

HAHAHAHAHAHA

hilarious:)

 

Edited by member 24 Apr 2019 at 23:11  | Reason: Not specified

User
Posted 25 Apr 2019 at 06:34

???? 

User
Posted 25 Apr 2019 at 06:50
I reported his hilarity to the moderator Chris

If life gives you lemons , then make lemonade

User
Posted 25 Apr 2019 at 07:05

Thankyou Chris, 😺

User
Posted 25 Apr 2019 at 08:26

DR is a strange man , needs to be ignored sometimes ...

Phil

User
Posted 25 Apr 2019 at 08:45

Originally Posted by: Online Community Member
This is just such a fantastic useful thread with great input from so many people. My wife and I have been grateful reading through this as I will soon have to make a decision on HT. I guess no harm in at least trying it ?

Definitely worth trying, I think, Chris. It made me feel as though I had a head full of cotton wool for a couple of months, but that cleared up again. The loss of libido is really the only side-effect I'm still experiencing. 

All the best,

Chris

 

User
Posted 25 Apr 2019 at 09:00

Originally Posted by: Online Community Member
I reported his hilarity to the moderator Chris

He didn't need reporting to the moderator. He was just reacting to Jasper's joke.

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

User
Posted 25 Apr 2019 at 17:38

Dear Saint Lynn

Thank you for being understanding and FAIR! yes I was responding to JasperM....& ....but cutlady and some others got me wrong.

I Was not mocking about with someone else feelings at all.

Your a busy lady busy person than Anybody else on here but your not easy to be distracted anyway.

D.R

Ps(my knowledge of Prostate cancer is zero. I'm a learner and not pretender  but I like great pretenders of freddy mercury anyway)

Edited by member 25 Apr 2019 at 17:42  | Reason: Not specified

User
Posted 25 Apr 2019 at 18:26

DR

In my defence, Can I just say that I was asking a question with question marks as I had no idea what the post meant or even if it was on the correct thread. 

I really would rather not get into disagreements when there is so much more going on. 

All  the best😊

Chris 😺

 

 

 

User
Posted 25 Apr 2019 at 18:45
DR,

When you reply to a post that's some distance up the thread it's helpful to use the "Quote" button so that people know what you're actually replying to.

All the best,

Chris

User
Posted 25 Apr 2019 at 23:49

Originally Posted by: Online Community Member

DR

In my defence, Can I just say that I was asking a question with question marks as I had no idea what the post meant or even if it was on the correct thread. 

I really would rather not get into disagreements when there is so much more going on. 

All  the best😊

Chris 😺

HI Chris

A-There is no disagreements at all.

B-I was responding to somebody else. 

B----I like cats but the one that is called Van Cats.

 

Good Night 

D.R

 

 

 
Forum Jump  
12>
©2019 Prostate Cancer UK