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Ongoing lack of libido

User
Posted 07 August 2016 07:53:07(UTC)
Hello everybody!
I'm new to this forum but would like any advice as I'm married to a man who was diagnosed and treated about three years ago and has had the all clear. He had hormone tablets and radiotherapy. Following radiotherapy we found that he could still get erections from time to time but the only thing that actually worked was a pump to get a full erection. Three years on my husband has no interest now in sex at all. His penis has shrunk quite a lot and he doesn't really like me touching it as even with stimulation nothing much happens. I'm 15 years younger than him and was extremely upset at our sex life being no longer as it was at the time I have tried to adjust and told him that it's okay we can do lots of other stuff like outer course as opposed to intercourse but still he has not got over his inability to have sex as he would like. He does go to counselling and we have been to counselling together. Unfortunately a recent ongoing vital problem has also laid him quite low. Since being diagnosed with cancer our marriage and my husband have changed completely and we are no longer the same couple. He has now told me he wants time away from home on his own which I'm quite happy for him to have. I unfortunately don't know what to say to him now or how to help him as I feel I have tried everything to support him. I suppose I would like to hear from any other wives who are further down the line with prostate cancer and the overall effects it has had with their sex lives and any men who can help me understand how my husband really feels about all this loss of his erections.
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User
Posted 08 August 2016 09:53:34(UTC)

Many thanks for your replies and sharing your thoughts and feelings with me I very much appreciate it its such a difficult problem and I have accepted that our lives have changed irreversibly. However, my husband feels very bad about this and I totally agree actually having intercourse is not such a big deal really its getting him over the idea that he can still enjoy many aspects of intimacy without a penis and getting him to do it on a regular basis as he just doesnt seem to even think about it as far as I can tell. We have a lovely home, two healthy, successful and fairly happy teenage children! and we have spare money to enjoy ourselves so its not so bad is it? So I dont know really how to get him to engage its very upsetting for me that he doesnt even seem to be interested and I so get fed up with me being the only one making the running.

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User
Posted 08 August 2016 21:19:56(UTC)

Dear all I have been reading through the forums and have read some of the womens posts who have posted here asking what to expect. Three years down the line I certainly did not expect to be in this position with my husband where he no longer seems to want to be intimate with me on an adult level shall we say. He is now 66 and i am 51. I did venture another conversation with him today and have said to him that he really needs to be more aware of how I feel and he did take that on board. We have worked hard to get through the deep disappointment, sadness and anger that comes with the loss of sex as we knew it. For my husband it has been an enormous loss and he is very angry still about his loss of manhood we have tried to keep our sex life alive even though we both really miss the closeness and enjoyment we both shared with intercourse. His PSA was 29 when diagnosed and he had HT and RT the hormones affected him really badly and changed him physically from having a strong manly body to looking somewhat like me. He had always been a stong and energetic positive personality and I depended on him to get me through my ups and downs especially as I was premenopausal and having many ups and downs in the past 6 years so far. It didnt help either that my sister was diagnosed with breast cancer at the same time and our children were doing their GCSE s and A Levels so we couldnt tell them anything till their exams were over, After RT we worked hard on the pump thing and he took pills. He had erections with the pump, nothing with the pills, but we never really got on with the pump it was to far removed I think from what we had had before. Three years down the line he has had some other health issues which are apparently unrelated to cancer with persistant throat infections which make him feel very ill. Last year he also retired which again has been a big change for him and me. I have felt very depressed, rejected dejected, unattractive and undesirable and without the husband I once had, I have wanted to leave at times and we have discussed getting a third party but I dont really want another man I want my husband back not necessarily as he was just back in a loving way. This has been the hardest thing to ever happen to me. Cancer has destroyed our relationship and we are now negotiating how our relationship is going to be from now on under these circumstances it is a cruel and difficult thing to come to terms with as I now have the decision as to whether I live with this for the rest of our time together ie till death do us part or whether I can tolerate a relationship with the man I love whilst carrying the deep disappointment I feel and the sense of loss. I do accept that we will never be what we were and that we still have many things to enjoy but this is not really what I want. I had no idea this would be the outcome after his treatment nobody told us this and nobody prepared us for this. Im sorry if this sounds negative one thing I would say is that I am still here and so is he we are hanging on and we do love each other so we hope to come to a point of happiness again one day. Where there is hope there is possibility.   

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User
Posted 12 August 2016 19:33:00(UTC)

WOW,

and there was me thinking through thick and thin,for better or worse, I could say more but I won't, how wrong can one man be

Im out of here ,last post I think, I prefer the dark side

 

Barry as a man

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User
Posted 07 August 2016 09:20:35(UTC)

Hi, just wanted to say welcome the site, sorry I can't be of any help as we are just at the very beginning of this journey, it can be quite quiet on here at the weekend but am sure someone will be along soon who will be able to help.

 

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User
Posted 07 August 2016 14:26:42(UTC)

Hello Bobswife and welcome to the site.

You say you are 15 years younger than your husband but I just wondered how old your husband is and whether age is also a factor in his lack of desire.

My husband, for instance, is 75 and although we manage intercourse with Sildenafil, he doesn't have the same libido that he did before PC and I know that he hates the fact that he is unable to make love without the help of a drug.

Anyway, as Lyn says, it can be quiet on here at the weekend but I'm sure you'll get replies later on or in the week so please don't feel that you are being ignored.,

If you go to the search facility at the start of the Online Community section and put in ED it may bring up conversations that you an follow.

Best Wishes

Sandra

********

We can't control the winds - but we can adjust our sails
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User
Posted 07 August 2016 18:59:55(UTC)

Hi 

Here is my point of view,

I am unable to have erections after five years ,never tried tabs or pump,I also suffer from incontinence ,penile shrinkage 

and have a loving wife who is 14 years younger ,sex is the ELEPHANT in the room, sometime I wish we could split up so she could have a life

But life as we know it goe's on

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User
Posted 08 August 2016 08:26:23(UTC)

Hi Bobs wife, my wife is fifteen years younger than me and when I was dx' with PCa in Feb 2015 we were already having very little sex as she was and is still going through the menopause and I have Peyronnes disease which restricts the size that my penis can become and also put a bend in it. The treatment that I am undergoing is HT and RT with the HT causing libido issues with this resulting in penile shrinkage.

I have been taking Cialis 20mg tablets twice weekly which works up to a point with blood pumping in the relevant area and have been using a pump as well. This is purely to prevent penile atrophy as the libido takes away any desire.

My wife and I have a good relationship and have talked often about the "no sex" issues and both agree that it is not the most important part of our relationship. Before all this happened we had a very good sex life and were adventurous in some of the things that we did.

We love each other far more than just sex, we appreciate each other and enjoy being in each other's company, we even laugh about our "no sex" but at the end of it all we have our lives. I am here being treated for PCa and grateful that at present I am in the curable camp and grateful that I will still be with my wife for many more years to come.

Life is better than sex, there is no requirement for sex but there is for life.

Chris/Woody

Life seems different upside down, take another viewpoint

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User
Posted 08 August 2016 09:41:05(UTC)

Bobswife, I hope you feel a little better today.

I don't know how much you communicate with each other and I suspect that currently your husband doesn't want to talk about it all anymore if he is asking for time alone, but communication is the key.

No amount of reassurance from us wives will give back to our men what they see as their "manliness" in the same way that for a lot of wives the ability to produce children is what we are on this earth for.

At 50 I had to have a hysterectomy . I certainly didn't want more children at that age but the mere fact that my "womanliness" had been taken felt dreadful and it took me years to accept it.

What your husband is doing at the moment is mourning his loss and like any loss it will take time for him to accept it. The fact that other issues have arisen is probably making him ask himself "what is the point of it all".

He probably feels that he is letting you down. Every time you approach him and touch him intimately with no reaction is showing him how useless he is.

Others on here have said (and I'm sure many more would agree, including me) that sex isn't the be all and end all of a loving relationship but unless he can get past this mourning period and accept life for what it is then anything we say  is no help is it.

The fact that you have both been to counselling is good, all is not lost for you both because it shows that there is a desire for acceptance.

What is his attitude to being alive instead of the alternative? Does he accept that he had to pay a price or is he saying he wishes he'd just left it as it was?

Do you have children?

Sorry, not being much help here really - pointing out the obvious a lot, but we are all so keen to help each other and feel inadequate when we can't get through to people. Well I do anyway.

Keep talking to us if it helps. Maybe one of us will say something that resonates and that you can pass on to him.

Hope so anyway


*******

We can't control the winds - but we can adjust our sails
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User
Posted 08 August 2016 09:53:34(UTC)

Many thanks for your replies and sharing your thoughts and feelings with me I very much appreciate it its such a difficult problem and I have accepted that our lives have changed irreversibly. However, my husband feels very bad about this and I totally agree actually having intercourse is not such a big deal really its getting him over the idea that he can still enjoy many aspects of intimacy without a penis and getting him to do it on a regular basis as he just doesnt seem to even think about it as far as I can tell. We have a lovely home, two healthy, successful and fairly happy teenage children! and we have spare money to enjoy ourselves so its not so bad is it? So I dont know really how to get him to engage its very upsetting for me that he doesnt even seem to be interested and I so get fed up with me being the only one making the running.

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User
Posted 08 August 2016 12:13:23(UTC)

BW I have emailed you

********

We can't control the winds - but we can adjust our sails
User
Posted 08 August 2016 21:19:56(UTC)

Dear all I have been reading through the forums and have read some of the womens posts who have posted here asking what to expect. Three years down the line I certainly did not expect to be in this position with my husband where he no longer seems to want to be intimate with me on an adult level shall we say. He is now 66 and i am 51. I did venture another conversation with him today and have said to him that he really needs to be more aware of how I feel and he did take that on board. We have worked hard to get through the deep disappointment, sadness and anger that comes with the loss of sex as we knew it. For my husband it has been an enormous loss and he is very angry still about his loss of manhood we have tried to keep our sex life alive even though we both really miss the closeness and enjoyment we both shared with intercourse. His PSA was 29 when diagnosed and he had HT and RT the hormones affected him really badly and changed him physically from having a strong manly body to looking somewhat like me. He had always been a stong and energetic positive personality and I depended on him to get me through my ups and downs especially as I was premenopausal and having many ups and downs in the past 6 years so far. It didnt help either that my sister was diagnosed with breast cancer at the same time and our children were doing their GCSE s and A Levels so we couldnt tell them anything till their exams were over, After RT we worked hard on the pump thing and he took pills. He had erections with the pump, nothing with the pills, but we never really got on with the pump it was to far removed I think from what we had had before. Three years down the line he has had some other health issues which are apparently unrelated to cancer with persistant throat infections which make him feel very ill. Last year he also retired which again has been a big change for him and me. I have felt very depressed, rejected dejected, unattractive and undesirable and without the husband I once had, I have wanted to leave at times and we have discussed getting a third party but I dont really want another man I want my husband back not necessarily as he was just back in a loving way. This has been the hardest thing to ever happen to me. Cancer has destroyed our relationship and we are now negotiating how our relationship is going to be from now on under these circumstances it is a cruel and difficult thing to come to terms with as I now have the decision as to whether I live with this for the rest of our time together ie till death do us part or whether I can tolerate a relationship with the man I love whilst carrying the deep disappointment I feel and the sense of loss. I do accept that we will never be what we were and that we still have many things to enjoy but this is not really what I want. I had no idea this would be the outcome after his treatment nobody told us this and nobody prepared us for this. Im sorry if this sounds negative one thing I would say is that I am still here and so is he we are hanging on and we do love each other so we hope to come to a point of happiness again one day. Where there is hope there is possibility.   

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User
Posted 09 August 2016 07:13:39(UTC)
B W

Having gone down the surgery route I have no experience of RT and HT but do understand the ED bit. Does the OH still have HT treatment and if not when did he stop. To the guys and gals out there how soon if at all did the libido return after HT ?

I have read other forums were guys have said libido can be affected by depression, PCa and it's side effects certainly have a negative effect on my outlook, not depressed yet but it wouldn't take much.

We also have a 16 age gap and that in itself is not an issue when younger but presents its own problems even for a healthy couple as you both get older.

From the last line of your post it is obvious you have not given up on your relationship. We men sometimes need a good kick up the backside.

Thanks Chris
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User
Posted 09 August 2016 09:03:07(UTC)

Many thanks for the replies and reactions to my post much appreciated. Yes I do definitely think you men need a kick up the backside at times! I have shown my post to my husband and he was genuinely quite upset by it. I do realise that I have been angry, frustrated and down right pissed off with it all at times and havent wanted to upset or share this with him because I really dont want to add to his burden of pain. I think we women as carers take on the responsibility of looking after our mens emotions for them at the risk of subjugating our own. So really we are at the point where things have to change, yes my husband is depressed although he says he isn't! He does go to counselling and this helps a lot I think as having somebody to talk to other than me as I am emotionally involved is better for him. When we had our diagnosis and my husband was having his treatment I asked a male friend who had testicular cancer and had a lot of chemo how his wife had coped with it all as I was feeling really bad and he said, "I dont know really Ive never asked her perhaps I should", I was rather taken aback by this and said well dont you want to talk about it and he said No I dont want to talk about it I want to get on with living! So I do think that men need to realise that their women need to feel connected through talking, touch, and having a feeling of closeness. I was very afraid of losing him and still am so I need that reassurance from him. Thanks!

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User
Posted 09 August 2016 09:26:02(UTC)
I so agree.
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User
Posted 09 August 2016 19:20:18(UTC)

Hello Bobswife,

I really feel for you, I really do.  Being a man, I do not presume to understand all your emotions.

I've read through this thread and it's reminded me of my last 15 years or so.  When I was diagnosed Type 2 diabetes, it seems I was immediately affected my Erectile Dysfunction, I didn't understand what the hell was going on, and being stupid at the time, I never asked my GP about it - really dumb. So my wife was very frustrated. Back then we were working in a family grocery business with my parents and my dad was a tyrant. I was working 70-80 hour weeks, so was probably worn out anyway.

When I was diagnosed with PCa, then my libido really did disappear. No matter, as in the past 18 months or so, my wife has developed a problem of her own, down below - so intercourse is out. I can't remember what it's called, but no mention of this is anywhere, but the medical profession know all about it very well!

In our case my wife is 7 years older, while I'm currently 59.  Yes, sex isn't everything, at present, I do not particularly miss it, but I do wish to remain intimate with my wife, as I love her very much.

I pray that you and your husband can return to some intimacy in your life.

 

 

Frank.

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User
Posted 09 August 2016 23:13:01(UTC)

My op was in April, 2 years ago, and tablets have not helped me regain erections. It's no big deal to my OH, mainly because she isn't all that bothered about sex anyway. I wish she were more interested, as I've lost any motivation to progress the lack of erections further. We do have our intimate moments, but they are becoming rarer.

It hasn't helped that in the last 12 months, we have lost my father to PCa, as well as my mother-in law in April, so much of our time is spent dealing with my mother who has no short term memory, and a significant estate, which has been extremely tiring.

Maybe things will improve as we get more relaxed time to ourselves, and I hope things will improve for you.

Paul

Stay Calm And Carry On.
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User
Posted 10 August 2016 09:10:26(UTC)

Hello everybody
Again many thanks for your replies and interest in my situation I have found it very helpful and informative and it actually has given me a means of getting through to my husband as Ive been able to show some of the replies to him so that he knows he is actually not the only man on the planet with this problem. In fact reading what some of the blokes do to keep their penis going he has got his pump out once more and is going to try the cialis tablet 5mg a day as he has a load in his drawer! So he is beginning to take it seriously again which is good for his self esteem if nothing else to see it pumped up. One of his problems is fatigue and he has a recurrent problem with inflamed lymph nodes and sore throats which can make him feel very ill. This is currently under investigation and has gone from oncology to haematology and will now pass to immunology. A lot of ologies!
Anyway, the moral of the story I suppose is to make intimacy an important part of your life and time together whatever intimacy may mean for you both it may be having a conversation or a laugh, I ask for foot rubs and back scratches and cups of tea and lets go for walk and hold hands and that helps just to have some contact. However, it greatly upsets me when he withdraws and gets locked up in a cycle of self pity. I have told him many times that he is not let off the hook and I am not content to have no sex life, it is difficult and very frustrating and is up and down but I am rather determined to have a regular and loving relationship with my husband and he I think is beginning to understand the importance of this to me and consequently is starting to work on his penis again not so much for sex but just to take care of it and not let it disappear, so thanks for your help who knows we may get something back. I hope some of you find this post helpful also in some way.

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User
Posted 10 August 2016 09:15:35(UTC)

Thanks Francesco no sex isnt everything but having a loving relationship with my husband is so important to me as Im just miserable without it 

There are lots of things he can do for me without full blown sex and he has to do them in my opinion! Many thanks for your prayers and thoughts and for sharing with me it sounds like you worked very hard at one time so now you deserve some relaxation and peace!

Very best wishes to yourself and family.

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User
Posted 10 August 2016 16:11:27(UTC)

Hello Bobswife,

thank you so much for your reply, I appreciate it.

Yes, I'm hoping to begin enjoying full retirement, as around Easter time, I decided to give up work, a part-time job at my brother's petrol station. So I ought to be able to give more attention to my wife - she deserves it!

At the moment, we have 2 young grandchildren running around the house. We have our grandson home for summer, and he insists on sleeping with grandma - so grampa gets stuffed into the spare room!

I forgot to mention in my previous post, that it is perfectly wonderful for a husband and wife to share a shower together; that's a sexy thought right there. Of course I can't at present, with grandkids around!

It was good of you to show this thread to your husband, yes we all have similar problems and must find our own ways to deal with it. My problem is at present I don't get erections, it seems my libido is bone idle! It bothered me in the beginning, but not just now. Just after I was diagnosed, I eventually stopped masturbating, I read in an article somewhere, it mentioned dry orgasms, well I wasn't interested in that, so I quietly gave up.

I have used cialis tablets in the past, so I suppose I could try again. Perhaps I'll try to masturbate once again. But I'm a bit nervous about finding out, it may not be as it was before.

Anyway, life is meant for living, eh?

 

 

Frank.

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User
Posted 10 August 2016 17:29:05(UTC)

Thanks Frank.
We only have a bath! And we could probably both get in it but not out of it. We have two teenagers at home so we are off for an overnight stay in a B&B! Dont give up Frank you can enjoy many things together anyway, it is really more of a problem for my husbands self esteem its actually more interesting and fum when you have to find ways aroun the problem but he has to take some responsibility for it as well. Best Wishes!

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User
Posted 12 August 2016 19:33:00(UTC)

WOW,

and there was me thinking through thick and thin,for better or worse, I could say more but I won't, how wrong can one man be

Im out of here ,last post I think, I prefer the dark side

 

Barry as a man

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User
Posted 13 August 2016 07:39:32(UTC)

Good luck with it all Barry and everybody else who has contributed yes time to move on now as myself and my husband have made some progress I think through this post. It is intense without a doubt but far better for him and me that however difficult or painful or upsetting that feelings on both sides are not just ignored. Actually, my husband has appreciated reading this post too. Our next step is to get a diagnosis for his current illness, as his cancer is physically not the issue now having had a very low PSA for a couple of years he is very fortunate that he has had the minimum amount of treatment and it was never deemed life threatening. The issues are for us as a couple to make time for each other and be more aware of our individual needs. After all I want to remain married to my husband out of choice not just a sense of loyalty, even though loyalty is a very important thing for me and him. Best Wishes to all.

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User
Posted 15 August 2016 13:01:51(UTC)

Hi Bobswife,

 

Just to say I totally understand your point of view. I grieved the loss of a sex life greatly and also felt like leaving many times, I was also sole carer making all the running as you say. My partner died nearly two years ago and I will never forget, how, for us, cancer took over and robbed us of our future and our relationship and his dignity, it was an awful time and I still am nowhere near forgetting just how sad. It helped me to know there were other women who felt the same and allowed themselves a good rant rather than the constant pressure to stay positive. No easy answers or platitudes here ! Throughout Neil's illness, I somehow found the strength to carry on, not easy but helped enormously by forums like this, it is such a lonely place as a partner. Be kind to yourself, life after a cancer diagnosis changes so much and as human beings it's hard to not be in control. My kindest regards,

 

Fiona.

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User
Posted 17 August 2016 18:32:24(UTC)
My OH had surgery 20months ago. He's now age nearly 60 - I'm 47. He had/has continence issues post surgery, and although it is improving, it's improving very slowly. He also has ED.

He has also been very angry about his loss of function, and has just refused to discuss it. He has a pump, but hates it with a passion and has only used it twice. He has daily cialis 5mg, which doesn't produce enough of an erection to use, but with a bit of play it will certainly react. He also has viridal, which does work, but he hates it. After a close shave where a and e was almost required, he won't contemplate using it at night. He gets up (no pun intended) at 6.00 to sort the animals (farmer), and we have two kids to get to school. He has lost a fair bit of size, and he hates that too.

I struggle to get him to understand the difference between sex and penetration, but I think that's s bloke thing. Before Pca, we had sex maybe twice a week. Now twice a month is more likely, and that's not penetrative. I think I might have lost my temper about four months ago. I told him he was a selfish ** and that if he wanted to be an old man that was fine, but I didn't. I might have told him there was nothing wrong with his fingers....

Anyway, it helped. Sometimes you just have to shout.
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Posted 17 August 2016 18:49:32(UTC)

Well done Louise - you made your point well, I think :-0

I think the big step forward for me was when I bought a vibrator and gave it to him with a 'do you think you could learn to use this?' I was curling up inside and probably would never have used it by myself but he took me seriously. In fact, it is still quite a useful tool for taking away that panic he has if he loses the erection part-way through and I have recently discovered that holding it against his scrotum sometimes helps him regain the erection.

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


User
Posted 24 August 2016 14:26:51(UTC)

Hi everybody,
Just to let you all know that i appreciate you sharing your comments very much. It is a b**** without a doubt as currently he seems to suffer from some sought of viral disease and is constantly tired depressed and im so pissed off with it. Yes its good to have a rant and i will check back now and then to this site to see how people are coping as i have found it very useful. its good to hear the other side from partners aswell because you do feel guilty at being less than understanding and patient I have come to the conclusion that i am just going to get on with my own life and leave him to it. I have two lovely children a new kitten and a lovely house and work to be doing and also my mother to think about as well as myself haha so onward and upward and we will just see how things progress ive said to him I have nothing more to say about it all ive said it all now you deal with it or else we may as well separate. So the ball is in his court. i am beginning to think he just isnt interested though and there is nothing i can do about it! Best Wishes to you all.

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Posted 24 August 2016 14:56:57(UTC)

Originally Posted by: Online Community Member

 I might have told him there was nothing wrong with his fingers....


 

I laughed out loud at work at this...  

User
Posted 24 August 2016 18:01:24(UTC)

B

 

 

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User
Posted 24 August 2016 18:27:17(UTC)
Ooooo.
User
Posted 24 August 2016 19:02:49(UTC)

I'm so tempted to get involved but I won't. I honestly see both sides of the story. I feel for you both truly.
An ongoing happy sex life is achievable without an erection , even though it can be depressing a lot. But in a loving relationship , marriage or whatever , there is always a way. And there are a lot of toy-shops , eg Lovehoney.com. Before you know it you could be having more sex than most of your friends.
But lack of libido , and depression , and loss of self-esteem are very very real things and can destroy a man. The only way to get through this is total open honest discussion , and compromise. Everything in marriage is compromise !!
Hope you get it together x




If life gives you lemons , then make lemonade
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Posted 25 August 2016 08:50:49(UTC)

BobsWife, Barry,

It is so sad to read about two people looking into an abyss.

Just because it is not the same abyss does not mean that it is easier or harder for one or the other of you. It is your own private hell.

But, we should all be able to express our thoughts freely here, to vent, to seek advice and support. Or just share the pain. As long as we do not maliciously attack another. Having a pop at another to defend if they attack someone, well that will happen.

Some time ago a lady expressed her thoughts here and that included some dark humour, she was attacked for that. It was her way of dealing, and people had the choice to read or ignore her posts. This was her release safe place where she could say what she wanted about her position.

None of us know all that has gone on between BobsWife and Bob. And if she does issue the ultimatum, and she will not be the first wife/lady/partner to do so, and if it works, excellent. And if i does not work, and Bob goes down or alone, well what about the family, do they lose everyone to PCa?

I too can see both sides.

Bobs wife, i hope you manage to achieve some progress, however small, as you said you made some progress a few weeks ago. Slowly slowly catchy etc.

Barry - it appears that sex is not the be all and end all for BobsWife, that Bob has other issues that are affecting him and their relationship? So it is not as simple, as "if you can not perform etc".

I hope that you both manage to make some progress and in time back away from your abyss.

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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Posted 25 August 2016 20:14:46(UTC)

Actually if you read my posts its absolutely not about performance its about intimacy my husband has been suicidal and I have fully supported him and helped him through and he obviously knows that and appreciates fully that what he is going through is not easy for me or for him sometimes you just cant do anymore so the choice is to accept things as they are or find another way to live a happy life I dont have any answers to any of this either I only have my and his experiences which I have shared here with some of you. Its not a question of loyalty or love really its about how much you are prepared to compromise of your own needs and if that makes you miserable what is the point in making each other miserable and adding to each others burden of unhappiness I dont think there is a right or a wrong there is just what works for you as individuals. Theres only so much self sacrifice one can give Im not a saint and am not aiming to be. Its very difficult dealing with the pressure of continuous illness and thats how it is. We will see! Best wishes to you all!

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Posted 26 August 2016 21:35:23(UTC)

Originally Posted by: Online Community Member

WOW,

and there was me thinking through thick and thin,for better or worse, I could say more but I won't, how wrong can one man be

Im out of here ,last post I think, I prefer the dark side

 

Barry as a man

Atb

Dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 26 August 2016 21:36:44(UTC)

Post of 26August at 22:36:44 reported.

atb

dave

edited to remove the abusive post

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 27 August 2016 11:17:44(UTC)
I don't want to add fuel to any fires and therefore hope what I write below will be taken as my attempt to mediate, it always amuses (sic) me that we live in a country where free speech is allowed but then not always?

So before I was diagnosed at 49 my sex life had gone from great and frequent to ok and less so. This was I believe part due to my oh accepting that we would not have another child and part I guess down to familiarly, tiredness, etc. So if you like , I had a higher drive than her. It never crossed my mind about seeking outside assistance with others and despite discussing on a few occasions accepted, albeit reluctantly, that her right to not want it was as equal as mine to want it. My friends seemed to be generally in the same boat although there was the odd " lucky " one!

Then came an effectively terminal diagnosis followed very shortly by the inability to function that way. Perhaps my wife was secretly pleased, I whilst not frustrated as I have no urge, miss what I would call " full" intimacy . It's a. but like looking back on some best memories that one knows will never be again. It makes me sad and I think it does for my oh a bit too however, just like before diagnosis we both have to accept the status quo here. We both realise as others have said, life is for living, my wife is very supportive of my running both in time and cost, I am supportive of whatever she wants to do, it's a fair exchange.

On the positive side our closeness is now all genuine I'd I don't do nice things during the day in the hope of a reward later and she no longer has any headaches in the evening!

This forum has been a haven for me since I first went to the doctors with symptoms. I have never reread my old posts but I imagine there are many words I wrote due to the emotion of the time, I hope I never offended or scared anyone else but accept that when you write freely that could be a bi-product. Reading others posts on this thread reminds me of the things I have had to deal with plus some yet to come and confirms my thoughts about what my oh has to go through, I genuinely don't know which is worse.

With effort, openness and tolerance we can all get there.

Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
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User
Posted 27 August 2016 19:57:46(UTC)

 

PM FROM DAVE TO BARRY

HI Barry,

Sad to read the content of your posts recently.

I do have an appreciation of what you may be going through.  

I have had all those experiences you listed, most hurtful of which was the totally disinterested partner.

It's a sad lonely place to be.  

Was for me anyway.

Are you able to discuss your thoughts with anyone?

Are you getting support?

I hope your today is better than your yesterday?

atb

dave

 

THANK YOU FOR YOUR CARING  PM  DAVE , FORGIVE ME IF I DON'T REPLY 

Barry

User
Posted 28 August 2016 04:35:28(UTC)

Originally Posted by: Online Community Member
 

THANK YOU FOR YOUR CARING  PM  DAVE , FORGIVE ME IF I DON'T REPLY 

Barry

Good morning Barry, Google "irony".

A lot of men have been through what you are going through.  Some coped better than you, others not as well as you.

None of that gives you the right to abuse others looking for help.  

From now on I will ignore your threads and posts unless I can offer support or the benefit of experience.  

atb

dave 

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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User
Posted 05 September 2016 18:53:47(UTC)

Hello to all
Hoping you are all well. Just to update the situation my husband and have decided to give each other some space and now we have separate rooms we had a massive bust up the other day and he actually revealed some of his feelings regarding MY behaviour which although hurtful was at least a breakthrough. He is though now beginning to be aware of his passive agressive behaviour and how destructive that is. His festering anger which he has had for many years and we believe probably was the cause of his first marriage breakdown is thankfully now being addressed in his counselling sessions. He has told me that he is now going to do all he can to try to change his old habits and be a more thoughtful partner. I of course have my own part to play in this and have told him that I will concentrate less on him and put myself first for a change then hopefully my resentment will be less intense. We have discussed separating but we are going to take things slowly and see what happens. I have told him that I dont trust him to change so he really he needs to regain my trust in him. I hope some of you find the partner side of the story helpful the emotional difficulties have been the most difficult part of all this for us it really does test our relationship. We are continuing to work at it. Best Wishes to you all!

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User
Posted 05 September 2016 19:34:34(UTC)

Hi Bobswife - glad to see that there has been some progress for both of you. Mental illness can be debilitating for everyone concerned and I hope you find a way through this together.

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


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User
Posted 05 September 2016 20:14:29(UTC)

Ditto

the above.

atb to you both Bobswife and bob.

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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User
Posted 05 September 2016 21:06:28(UTC)
BW

I wish you both well with getting through a difficult time.

Thanks Chris
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User
Posted 23 September 2016 13:03:00(UTC)

Dear All
Would like to share the latest update with you all as you are all so supportive. My husband has recently had to have a bone marrow test and another biopsy on his lymph nodes and we are now awaiting results unfortunately his mystery illness has worsened and a last visit to the consultant meant me telling them in no uncertain terms that if they didnt sort out a diagnosis of what was going on with him then he would end up hospitalized as he has lost an awful lot of weight and is very weak cant eat much has very bad night sweats apparently a swollen spleen and several swollen lymph nodes in various parts of the body acording to an MRI continual sore throats and headaches. Do any of you have experience of developing lymphoma or myeloma following PCa treatment or does this sound like the PCa has spread. This illness has been on going for about 18 months now but has become very much worse in the last three months. As for the emotional side I'm trying hard to go out and see friends, go and see bands and do things without him as sitting at home every evening listening to him coughing and looking dreadful and he has the most awful reeking bad breath, is just too much, sounds self centered I know but i have to keep myself boyant as i dont want it all to go to pot. He is now on steroids for a week whilst they sort out test results which will hopefully make him feel a bit better.Dont know how he is going to cope if he has to have Chemo as he is currently so ill.

User
Posted 23 September 2016 18:57:59(UTC)

Yes it does sound self centered 

Sounds like your husband needs a friend and lots of support, as he is quite ill

I am just looking across the room at my wife and am thinking how lucky I am

Sorry for this posting Is it me or am I just old fashioned 

 

User
Posted 23 September 2016 19:00:40(UTC)
No you are bang on!!😃
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Posted 23 September 2016 19:26:42(UTC)

I sincerely hope that your husband gets some relief from the steroids as he needs all the help he can get

*********

We can't control the winds - but we can adjust our sails
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Posted 23 September 2016 21:16:10(UTC)
BW

Like Johsan I hope you find a resolution to your problems, I do not live in your house and situation and do not know what you are going through. Are you being selfish or trying to survive a difficult situation, I suspect the latter?

I thought the idea of this site was to support fellow members.

All the best to you both.

Thanks Chris
User
Posted 24 September 2016 08:16:05(UTC)

No one has the right to be judgemental towards you. We all do what we can to survive the implications of a partner's illness and developing some detachment is part of coping and keeping yourself sane, it's also perfectly normal. When Neil was so ill, the last thing he wanted was me hanging round him all the time, it made him feel his sense of helplessness more keenly. You are right to ask for medical services to step in, there are some things we simply cant cope with in our own homes.

 

Fiona. xxx

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User
Posted 24 September 2016 10:36:43(UTC)

Bobs wife,

Wouldn't it be more useful if people were nicer here and offered constructive advice and support, instead of putting others down in their ignorance?

No one has a right to judge you. If you do not use coping strategies that work for you , then you may not get through this, and be no use to anyone.

As for the pious, and holier than thou? They have no idea what you are dealing with and going through.

But quick to condemn you. How negative? How sad. Nasty even?

Not so quick to offer any practical support or ideas to assist you. No, that would be positive, and nice.

Maybe making you feel worse makes them feel better? Even more HTT? If that were possible?

Do what you need to do, your family consist of more than just Bob.

Are you getting all the outside support and assistance you can? Social services? Do you get any respite care for Bob or yourself?

Are all the family helping, supporting, or expecting you to manage alone?

Take care of all your family, how's the puppy or is it a kitten?

atb

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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User
Posted 24 September 2016 12:25:30(UTC)
It's most unfortunate that I read your latest post last night, shortly after reading that a Lady who has contributed on this forum for several years had lost her Husband to this s*** disease yesterday lunchtime after years of dedicated care and all the ups and down that a long term illness can bring.

I am certain my own emotions were running a little high so I am pleased I did not respond with the words I had wanted to yesterday evening.

Reflecting on this overnight, and yes, amongst other things, it did play sufficiently on my mind to prevent me from sleeping much, I can only conclude that you really are struggling to deal with things on your own. You had agreed to separate rooms and giving each other more space so who can judge you for going out or socialising with friends whilst he stays at home. You will do what you feel is right and appropriate for you.

You will not be the first and you certainly won't be the last, sadly, as Fiona has said to discover that you just do not have the fortitude to deal with all this. No good time for that to happen so doing things out of guilt or handling things in the way you are now all on your own with what sounds from your own descriptions, almost with contempt, is probably worse than leaving him in the hands of a supportive and comprehensive care team.

I am not at all surprised you have had some less than supportive messages, your posts are thought provoking and probably bordering on inflamatory to some. This is not a common situation. It is not one that everyone will be able to see the other side of either. I am sure it happens more often than we know of just that very few have the "insert any adjective you feel appropriate here" to come right out and say it. This forum is open to everyone though and that means all posts and the responses to them may not always be to everyone's liking.

I would urge you to continue to fight for Bob's care package and for any help that outside agencies can give. I don't think you have said anything much about any family on here or if there are friends who could provide any company or help for Bob. I do recall you saying you have teenage children at exams stage so presumably 16/18 are they aware of the situation now and how hard it is for both of you? more to the point if they know how are they coping?

As for his ongoing medical issues, which I believe was the original purpose of your post no? In light of his previous issues and as he is probably feeling desperately low and very frightened is there any chance that he is self harming ? Of course viral infections can be horrid and the medications cause unpleasant side effects too including bad breath or black tongue with some anti viral drugs.

I hope Bob gets all the help and support he needs and that you can also stay within a coping srategy that works for you.

atb
Mo
edited slightly having been able to read back further.
also hoping to push the page not found out of the way
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User
Posted 24 September 2016 17:26:35(UTC)

Dear All I find some of the replies quite astonishing what I asked was Does anybody have experience of having Myeloma or Lymphoma following their prostate cancer treatment? Im really not interested on your judgement of how myself and my husband organise our lives. My husband DOES NOT WANT me sat with him all the time he wants me to carry on with my life as it gives a sense of normality. What high minded, superior sounding smug comments there are here. Other than cook for him, keep him company go with him to his appointments, arguing his case at appointments pushing for action as the Consultant adopted a policy of wait and see, is there to do? I have to now do everything in the house my job has been put to one side and keep the children informed and be cheerful for them. If you cant make a CONSTRUCTIVE COMMENT INSTEAD OF A PUT DOWN THEN DONT COMMENT! There are definitely limits to what can be done and social services are not required my husband can get upstairs and bath himself still thank goodness and can make himself a cup of tea. Unfortuately, he is not close to his brother his only close relative left and my familly live 200 miles away, I have contacted a friend or two as he does not contact his friends he never has, must be a bloke thing im afraid we now just have to wait for test results to come through so that they can decide on a course of treatment his deterioration has been very quick within the last month. if anybody has advice to do with terrible bad breath and its such that I have to keep the windows open that would be useful. No he is not self harming he is in himself an independant minded and capable person and yes it is extremely hard but we do have support and we do have friends and we do what we have to do to cope and keep as i said earlier of sense of optimism and enjoyment still in spite of CANCER if that is what it is. I have probably been a little too honest here but im not looking for sympathy thanks im looking for anybodies experience of post cancer treatment illnesses.

User
Posted 24 September 2016 18:57:48(UTC)

good on you BW,

ignore my comments if they offend.

It struck me earlier, thinking about a comment someone made about being "old fashioned".

I was told a long time ago, if you can't say something nice. say nothing.

Go girl, and survive.

Have sent you a pm about Barry's other half.

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 24 September 2016 19:58:14(UTC)
If my honesty in saying how I felt when I read your post, or my comments which were genuinely offered offended you then just ignore them. If my suggestion about drugs causing bad breath wasn't of interest suffice to even check it out then ignore that too.
I believe both Myeloma and Lymphoma are classified as liquid cancers so if that is Bob's problem it is nothing to do with PCa which is a solid cancer. They can both occur as a result of RT, Chemo or other treatmnts but by definition that is treatment related not PCa related. Your medical team should be able to diagnose both from the tests they have already done. Several people here have had problems with Lymphoma but I am not sure about Myeloma. If you try using those words in the search facility you may find some links to other related threads.

Anyway you clearly don't need anyone to try and explain why you may have had some less than supportive comments. You seem hard enough to deal with that all on your own. If that is your coping strategy then good luck with that.

Has your reaction upset me, hell yes but that's nothing new.

I really hope you can get through this but moreover I hope Bob can too.
Mo


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