Relationships

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. 

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.

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

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?

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.

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

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

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

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

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 😻

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