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Ongoing lack of libido

User
Posted 24 September 2016 22:53:19(UTC)
Wow BW how to make friends and influence people . I am assuming you don't work in the nursing or caring profession and if you do can you pm and let me know which area so I can avoid it like the plague.

Bad breath that's a bummer Trevor has that unfortunately due to him taking Zometa he can't have most dental procedures so my advice on that is loads of extra strong mints dotted around the house. (that's for me not him) I don't tend to keep the windows open just in case Trevor gets a chill .

ED well to be totally honest we haven't shagged in at at least 3 years , what with the terminal diagnosis and the hormone treatment and a bit like you the cooking , the ironing, cutting grass , putting the bins out , looking after 17 dogs and trying to keep cheerful for our two young children 12 and 16 even though they understand that there dad is going to die we try and stay cheerfull . So to be honest sex is the last thing I think of or worry about.

The relentless appointments are a pain aren't they I attend all of those as well and trying to stay positive as Trevor is told more bad news is hard even worse is facing our children and informing them .

Trevor can also still wash himself and make a cup of tea so like Bob pretty independent , if and when Bob gets so ill that he can't wash and make himself drinks you could just push a straw under the bedroom door that way you wouldn't have to face his breath.

For many years I worked in care homes looking after grumpy old people that I had no emotional attachment to but I treated them with care and respect .

There is an old saying and although I am not religious Do unto others as you would wish done to you.

BFN
Julie
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 25 September 2016 07:16:03(UTC)

Julie have messaged you X

We can't control the winds - but we can adjust our sails
User
Posted 25 September 2016 07:34:08(UTC)
Oh dear, something like this happened once before. This thread appears to have had a number of posts edited out or deleted all together. It means that some of the responses seem completely out of context.
This hasn't been done by the moderator as that would be clearly noted on the post. The only other person/people who can do this are those that have originated them.

Just pointing this out for those who would be surprised at either the responses so far or wish to make a future comment.
Things are not always what they seem.
Mo
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User
Posted 25 September 2016 08:54:10(UTC)

I find it very odd that people have got the impression that my husband is some poor unloved neglected old man that is unloved and uncared for if that was the case I wouldnt bother being on this forum trying to find answers and ways to help him, he doesnt like the bad breath either! If people find it uncaring that I have commented on his awful pervasive bad breath then i apologide for upsetting them by mentioning it here as for putting straws under the door that is just a silly comment to be ignored Unfortunately I find some of the attitudes here judgemental and just unhelpful . And by the way if you look at advice for people caring for the sick at home the advice is to have your own life as well if i go out to a friends house for a cup of tea or go to a concert it does not mean that my husband is left alone to struggle by an embittered wife. It means that I am taking care to have time for myself so that I can be a better person for him. The judgemental and bitter sarcastic comments are really very poor as much as I feel for peoples situations here Im not going to bother to comment any more as it has all been scewered by people with their own agenda.

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User
Posted 25 September 2016 10:46:37(UTC)

I actually think the moderator should close this thread as quite frankly some of the comments are unacceptable. I've no idea what any new person would think.

User
Posted 25 September 2016 11:00:50(UTC)

I agree Im a new person to this forum and Im shocked!

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User
Posted 25 September 2016 12:42:51(UTC)
I'm living with it but this forum gives me great comfort that I'm not on my own with the ED and other problems associated with it
User
Posted 25 September 2016 12:46:51(UTC)

Perhaps there are some topics and posts that hit a raw nerve with some readers hence the responses. To me, the content of this post touches some very sensitive stuff, eg., can my wife/ partner cope with the physical, practical and emotional effects of the disease, will she leave me, etc. None of us know how we will react until we are in that place. Those who feel it is a wife / partners duty to stick by an ailing spouse may feel very differently as the toll of caring for someone and watching them deteriorate advances. Some, who appear to be coping and doing the positive stuff may be feeling very different but guilty about sharing this. Others who openly struggle with being a carer, do infact cope despite lots of negative feelings about their partner and situation. One is no better than another, and no one should have to feel criticised, inadequate or guilty whatever path they go along. Dont know if you are on Face book, BW but a while back I joined PSA (Prostate Sisters Accord) where women coping with all this could indeed express themselves without judgement, might be worth a look.    Regards,

 

Fiona.

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User
Posted 25 September 2016 15:34:43(UTC)

I think you are spot on Fiona. It struck me while reading the posts and replies that not so long ago we had another wife whose husband had serious mental health issues which made him aggressive and hard to be with. Generally speaking, we all rushed to offer support, advising her to look after her own needs and not feel obliged. A suicidal partner can take up every ounce of strength and test even the most patient friends and family. Similarly, as wives and partners come to the end game with their men, we are careful to say how important it is that they look after themselves & take time out when they need it - after all, who is going to care for the carer? I don't think that BW is doing any different to a lot of other people but perhaps is a little more blunt on the forum than we are used to or some feel comfortable with.

When my step-father-in-law (not Stan, the other one) was seriously ill my mother-in-law would get really angry that he was laid on the sofa all day when he should be cutting the grass etc. She refused to take time off work so I would go every day to sit with him, and I ended up giving all of his end-of-life care. It wasn't that she was cold or cruel, she loved him to bits but a) was in denial about how seriously ill he was and b) was going to need that job when he died. His view was that she was going to be a young widow and needed to carve out some kind of life without him sooner rather than later. When I was caring for my mum in the final stages, I hardly left her side except to take an hour every evening when the Marie Curie nurse arrived - I went to the gym, ran, cried, ranted and then went back and carried on.

BW, the smell can be truly awful but can happen in all sorts of different illnesses and is simply an indicator that something is wrong. Step-father-in-law had it, my mum had it and so does John sometimes, particularly when his glands are up. It also affects the taste of his food :-( I am not aware of any increased risk of lymphoma or myeloma after PCa (Stan had lymphoma before PCa but there was no suggestion that they were linked) - have they checked that the PCa hasn't spread to the lymphatic system and/or has he had problems with lymphodema since the original treatment?

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


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User
Posted 25 September 2016 18:17:25(UTC)

Originally Posted by: Online Community Member

I actually think the moderator should close this thread as quite frankly some of the comments are unacceptable. I've no idea what any new person would think.

That might happen on Monday Brian.   

There have been other partners previously who have shared frankly, and with some dark humour, what they have needed to do to get through.  They too were treated and judged harshly by those who had not a clue, not you I hasten to add!  I have given 24/7 care to a partner, so I have an idea of what it is like.  You, and most others are constructive and try to help, not condemn.

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 25 September 2016 18:40:22(UTC)

The bad breath is very strong unfortunately and he does have an odd taste in his mouth it has improved slightly with the steroids but is still there I thought it had something to do with him not eating enough and have been getting very frustrated with his refusal to eat he is eating now but not really enough. My son has also commented on it and said to me how revolting that smell is. I think with treatment he will be feeling much better the doctors have said it is treatable although they havent said what it is yet or how they are going to treat him I suspect his current illness is either that the prostate cancer has spread even though we were told he was cured or that he has lymphoma we are just waiting to know.

Thank you for answering some of my question.

User
Posted 25 September 2016 20:12:28(UTC)
Originally Posted by: Online Community Member
Originally Posted by: Online Community Member



I actually think the moderator should close this thread as quite frankly some of the comments are unacceptable. I've no idea what any new person would think.



That might happen on Monday Brian.


There have been other partners previously who have shared frankly, and with some dark humour, what they have needed to do to get through. They too were treated and judged harshly by those who had not a clue, not you I hasten to add! I have given 24/7 care to a partner, so I have an idea of what it is like. You, and most others are constructive and try to help, not condemn.


atb


dave


Hi Dave hope you are well

In my career and personal life I have seen many people who are caring 24/7 for people they love and also those who work in the care industry who may not have any emotional attachment to they people they care for.

I understand how extremely difficult the caring role can be. In fact at last legislation has also recognised the difficulties carers face. However, I don't wish to get involved in a debate about people's posts on this thread but felt I had to comment on some of what I read, as imo, it had started to become quite
vitriolic which is disappointing.
I also hasten to add that your posts were very supportive as always

Bri

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User
Posted 27 September 2016 09:14:03(UTC)

Hi everyone,

I'd like to give everyone a gentle reminder about the house rules for the community.

Our house rules are 'be supportive', 'be kind' and 'help us keep the community peaceful':

http://prostatecanceruk.org/get-support/using-the-online-community#house-rules

We don't want to start locking threads and issuing warnings to people about their behaviour so please can I ask for everyone to be considerate to each other and respect differing opinions.

Best wishes,
Carol

Digital Manager
Prostate Cancer UK

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User
Posted 27 September 2016 11:39:04(UTC)

  "   We don't want to start locking threads and issuing warnings to people about their behaviour so please can I ask for everyone to be considerate to each other and respect differing opinions. "

____________________________________________________________________________________________________


You can indeed. Thanks for the timely reminder.  Unfortunately we are only human and sometimes our own situations spill over into a conversation and touch raw spots.

 

I'm sure we'll all quieten down a bit and do what we do best -  Look out for each other !!

******

We can't control the winds - but we can adjust our sails
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User
Posted 27 September 2016 21:42:51(UTC)
Hi BW
I think in terms I understand thr moderator post means the ref has given the thread a drop ball and some of us a yellow card!
In the true spirit of things I reckon that is fair.
I said to a good friend of mine yesterday "sometimes we need to remember our common enemy is PCa not each other.
Atb
Mo
User
Posted 08 October 2016 20:32:34(UTC)

Seems to me BW has been open , honest and yes expressive about the way she feels - good on her . Likewise , so have some of the replies . At the end of the day whether sufferer or carer we are all trying to cope with a sh**y scary disease .My wife copes by not talking about it , either the lack of sex , or the continued incontinence which is much more of a frustration for me , despite the fact that I'm back playing footy , going to the gym , cycling , running etc . We've a sort of understanding , sort the peeing and then sort the sex .We still do things together still kiss and cuddle , but even with the pump our attempts at sex have been a flop - literally . Ciallis gave me aches and pains and severe headaches , so that only lasted a week . Then back to Viagra . Does it work ? Not sure - I've usually fallen asleep . But it's so good to wake up knowing I'm still alive and still in a loving relationship with my wife and family despite our problems .
Difficult I know but try and keep the spirits up - if nothing else

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User
Posted 08 October 2016 21:40:26(UTC)

Alan, 

How long did you try the Cialis for?

When I started with Cialis, it gave me severe calf ache and headaches for about 2 - 3 weeks.  The pain would keep me awake and I was taking ibuprofen and the other painkiller. 

After about 2 to 3 weeks, it seemed my body got used to it, the pain stopped, the cialis did its bit.

I had read about the potential benefits of the Cialis so I was prepared to endure the pain and discomfort for, I don't know, a couple of years or so! 

Seriously, if you only gave it a week, it might benefit you to try it again for longer?  My pain was worth it.

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 09 October 2016 16:10:04(UTC)

Spoke to my Nurse specialist who advised me to knock off the Ciallis , so I did . Immediately felt better . I've my next O/P appt in a couple of weeks time so I'll be asking a few more questions .

With hindsight , although at the time it seemed good that the Consultant and team were positive about outcomes , I think their optimism re. recovery for sexual function and continence was over the top and created false expectations for me . A more realistic approach would not have put me off the op ,but I guess would have helped me in terms of the frustration I feel . Like others I've been told a few times ' it's early days '.No definition of whats early and whats late .

User
Posted 09 October 2016 16:50:36(UTC)

Originally Posted by: Online Community Member

Spoke to my Nurse specialist who advised me to knock off the Ciallis , so I did . Immediately felt better . I've my next O/P appt in a couple of weeks time so I'll be asking a few more questions .

With hindsight , although at the time it seemed good that the Consultant and team were positive about outcomes , I think their optimism re. recovery for sexual function and continence was over the top and created false expectations for me . A more realistic approach would not have put me off the op ,but I guess would have helped me in terms of the frustration I feel . Like others I've been told a few times ' it's early days '.No definition of whats early and whats late .

Hi Alan, 

You appear to have had your prostatectomy in or around April 2016?  Early days is a subjective term.  It is often quoted that your recovery will be as good as it gets at the 2 year post op mark.  If that were the case, then at 24 months, the recovery process in your body shuts down, and that is it. What recovery you have made at 24 months is what you will have to live with for the rest of your days.  I am 3 years and 6 months after RRP, still improving.  So the 24 month rule is not necessarily true for everyone.

Fortunately I did not read the bit that said I had to stop improving at 24 months!  The bits I read that said what I had to do, and when I did it found it did not work, I went and did my own thing, and that worked.

The only certainty about any man having Pca, and dealing with it, and recovering from it, is that it affects everyone uniquely. Despite all men having the same basic "kit" or "bits", the after effects are unpredictable.  Until you have it, until you are treated for it, until you try the various meds, and recuperative techniques, no one can predict how you will recover or respond to whatever.  How much of the is down to you, your attitude and stubbornness, I don't know.

If you take from this post one thing, take that you are unique, until you try something you will not know how you will react or respond.

It's up to your if you persevere with meds.  Cialis gave me sleepless nights for quite a while, several weeks, but having overcome the initial aches and pains, and my body becoming accustomed to it, I am glad I persevered.  Viagra had no effect for me for several months. 

I wish you well, but you really are early days, still.

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 29 October 2016 20:43:28(UTC)
Hi,
I totally understand your frustration. I feel guilty because I miss my sex life and the intimacy of being close to my husband. Surely I should just be grateful that he is now Cancer free? My husband keeps apologising but I just want him to think of other ways we can enjoy being intimate. He looks very disapproving when I suggest a vibratory. We have tried a pump with no success and will ask about other options at his next appointment in November. He has lost his smell since his prostate as been removed, has anyone else noticed this change in their men?
User
Posted 29 October 2016 21:30:48(UTC)

When you say you have had no success with the pump, what do you mean? Is he using it daily to keep the blood flowing and if so, does he get enlarged in the tube? Is it just using it for penetration that you are finding difficult?

Problems with the pump are almost always down to technique - we will try to help you if you can explain when or what goes wrong

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


User
Posted 30 October 2016 18:58:23(UTC)
Hi Lynn
I am really having to persuade him to use it daily to help the blood flow. The few times we have used it to attempt intercourse have been awful. The look of his Penis makes me go cold, I find it a real turnoff. I also don't like all the gel he puts on it and it's not hard enough. He won't let me help with the rings and says he finds it painful. Any suggestions would be welcome thanks.
User
Posted 30 October 2016 19:37:29(UTC)

Hi Karen
Have a read of the " erecting the erection " post which many men have Inputted to. It's pretty heartbreaking for both partners. My pride and joy of 48 yrs was reduced to something I barely recognized post op. But I persevered and persevered with the pump and still use it daily even 16 months on. I have pushed and pushed my own appointments and recovery to get it sorted out. It helps if you were a loving intimate open-minded couple before the op. My wife and I had zero problems keeping things active , despite the fact my erection was missing. I welcomed toys with open arms haha. All my dreams come true. You don't say how long since treatment ??
Things will never be quite the same , but we are now managing penetration whenever we want using a daily dose of Cialis 5mg although I had to fight to get it prescribed. I hope you can get through this together. You need to be a team. We laugh because in reality we are having far more fun in the bedroom than most couples we both know who have zero health issues. It can be done with an open mind




If life gives you lemons , then make lemonade
User
Posted 30 October 2016 19:41:46(UTC)

I think if you find it a turn-off he is probably best to stick with the therapeutic use for now. John's ED nurse told him to do it 5 times, 3 times each day so that was morning when he woke up, evening when he got in from work (before his shower) and then at bed time. It seemed a drag and I had to bully him sometimes but it paid off in the end as he got natural erections back about 3 years post op.

If it isn't hard enough for penetration then he isn't using a tight enough ring - it usually causes numbness rather than pain! But leaving the rings to one side and just using the pump on its own is perhaps best strategy for the time being.

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


 
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