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User
Posted 29 Mar 2016 at 23:07
My OH seems to be in a dark place. He was diagnosed over 2 years ago and had been on active surveillance but the latest MRI and template biopsy have shown more cancer and he is due for LRP in a few weeks. He says its like he is being pushed towards an abyss and cannot see beyond it. He says that he will feel utterly diminished. If he could stay as he is until, as the docs have implied will happen, the cancer spreads then be 'finished off' quickly he would chose that. Tonight he said that if he was offered the choice between losing his sight and having his prostate out he didn't know what he would chose. It doesn't help that he sees the time before the op as our 'last time' together and due to a return of the infection he got after the biopsy he feels unwell and unable to enjoy things. Our so called cancer liaison nurse who should be there for us never responds to calls. I feel so out of my depth. I have told him that this is not the end, that things will change but that we will try to deal with them together. He seems unwilling to join this forum and see first hand how other people manage. I think he would rather risk the no treatment option, even if that meant not surviving. Really need some help to support him
User
Posted 30 Mar 2016 at 17:23

Hi BJS
I've been thinking how to reply. I'm emotionally wrought after my journey and it's far from ended yet. Please if you can be bothered click my ugly face and read my story. People on this forum will vouch I'm the most negative member yet. I'm bipolar and was in a horrible place in life BEFORE the cancer diagnosis. I didn't want treatment , incontinence , impotence. I just wanted to be left alone. But my parents and family and wife and hospital and all the people on here urged me on.
I had radical surgery and it failed. I'm continent but fully impotent. I'm now fundamentally incurable. Do I regret my choice ? I'd love to say yes because in many ways it was a waste of time and caused so much damage. But also I'd say no because I've laid awake at night thinking what it must be like to only have weeks left.
A certain member Luther told me I should be able to look back in the future when I'm really ill , and be able to say I tried , and that I did the right thing by my family and friends. So I tried , and I agree at least I can hold my head up high.
My life has changed awfully , I miss sex , and never a day goes by where I don't think about cancer and what to do and what route to take. But my wife and I are mega close and still intimate , my little boy and my parents still have me , and I am alive. In truth I'm in a better place than I was 3 yrs ago despite the diagnosis. It's worth a try. If I did it , then I believe ANYONE can. Seriously. The alternative might seem romantic to awful pessimists like some of us , but I'm now sure it's not. This site has lost many many wonderful members. Each of them husbands and fathers. And I've seen a lot of members go in my short time on here. No-one should be in a rush to join that club. Please keep posting and you will get help. Ensure he gets the help he needs. Message me anytime
Chris

Edited by member 30 Mar 2016 at 17:25  | Reason: Not specified

User
Posted 30 Mar 2016 at 18:03
I very nearly sent a reply earlier this afternoon and was about to send when I thought again and decided to cancel. Now I'm clearer in my mind about what I'd like to say. This a really difficult situation and the responses have been very supportive and informative.

All I can say is that I was in shock like so many of upon dx. I was told to expect surgery but in the end this was not possible so I went the HT/RT route.
The approach I took was to try to be as positive as possible. I wanted to make sure that all my family, friends and colleagues at work found me approchable and could feel able to talk to me at anytime about what I was going through. And they did. I had marvellous support from everyone and still do.
However there have been the inevitable dark days and I really dislike the HT. Some times I have felt sorry for myself , but not very often now. One colleague told me that I made having cancer sound like fun with the stories I told regarding procedures etc. I had people on my side, laughing with me and not avoiding me.

I posted very recently that when asked how I felt upon dx how did I feel. I said 'Lucky - fortunate that's it's been found and that I have the opportunity of treatment.'
Some cannot understand this at all. But I chose to treat all the scans and other procedures with interest and intrigue. Almost like a third party - a work project, if you like - except it was personal to me.
It helped take my mind away from the reality that if I wasn't going to be treated then I had between 5-10 years left. ( my wife asked the Onco directly re life expectancy).
I'm almost 2 years since dx. I haven't regretted anything. If my Psa levels rise upwards from my current 0.2 and I require salvage treatment then at least I know I've been chances of survival.
And I like living. I love my family . I have good friends. I'll do anything to stay with them. And tell your husband that his tennis friends need him to make up a 4!!!!!

John

User
Posted 30 Mar 2016 at 11:06

Hi - I am also a partner of someone with prostate cancer (in my case my fiance's cancer is advanced). I am answering this not because I have lots of expertise (I am learning on my feet!) but because I have a couple of suggestions that may be of use and hopefully it will also help bring your post to the attention of someone who can help more.


If your OH doesn't feel able to join this forum - no matter, you're here! You will be able to find tips etc. that could be of use to him and help him in that way. My fiance can't relate his cancer to others' and finds success stories unhelpful and I can't see him joining here either at the moment (perhaps our OHs are still adjusting to the news?). 


Try talking to one of the nurses on this sites helpline - I'm sure that they will offer you advice on where to go from here.


It sounds to me that your OH could do with talking to someone, although not all men are willing, but perhaps you could talk to him about it?


You could also do with someone to talk to - I felt completely overwhelmed at first and scared (still do from time to time but  it's getting better)and I found that even just one session with someone from MIND helped me. Mutual friends have helped me too. 


If you're having trouble getting in touch with your specialist nurse perhaps you can raise this diplomatically at your next meeting or if you do get in touch with them? Find out less busy times or an alternative contact as examples.


Feel encouraged that your OH is talking - I'm guessing that he is saying things to you that he wouldn't say to some other people and that in this way he is getting some of his emotions and feelings out (even though it is so hard for us too see our loved ones go through this). You have told him that you will get through this together and I think it will be helpful for him to hear this as he will know that he is not alone.


Also, remind him that if he is having an LRP then this will be with the intent of curing the cancer I believe which is good news really and why he was taking a wait and see approach in the first place. In the grand sceme of things he is now at plan B and not plan Z!


What about the two of you getting out to do something so that you can both have a break from thinking about things if you are able? 


Hope this helps!

User
Posted 30 Mar 2016 at 12:44

BJS your husband's reaction is not uncommon and as with Jilly's other half,mine won't use the site either.

It's a very difficult time for him (and you,I know) and I don't suppose anything you say will make him come round. As he sees it, his life is in ruins because he's going to be incontinent, will never get another erection, will never be intimate with you again.

Those are all the things he is focussing on and I really don't know how you can get round this, except be a bit firmer about how it is for you. Has he thought of that, looked at the other side of the coin? It's selfish on the part of our men to see this only as affecting them. If we love then we hurt too.

So he'd rather do nothing and risk not being around to grow old with you. Have you pointed out that choice is his choice but that you would rather have him around for years and years even if life is different.

It will be hard to convince him that all the things he's frightened about - and he is - doesn't mean that you will love him less or that he will be less of a man.

You are in this together. If your marriage was strong before then this won't break it. Might dent it a bit but hopefully you'll come out the other side stronger and as loving if not more.

Not all the side effects that can happen do. Some men recover very quickly, some less so. Perhaps once the operation is done he will get his head round recovery and doing the best he can to regain everything possible.

If you go to publications on this site, you should be able to find leaflets on pelvic floor exercises and ED etc. They may help answer some of his fears.

As for lack of communication with his nurse, we were abandoned to - at least that's what it felt like.

You've found us now, so even if the other half won't talk to us, you can. We'll do our best because we're all in this together

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 30 Mar 2016 at 12:48

Hi BJS- 


Sounds like you're in a  tough place right at the moment- but it also sounds like you see it as it is. Keep that in mind. The fact that you've joined here speaks volumes.


I'm 6 weeks after an op now. Yes, things have changed. With my op date looming, I remember thinking 'this'll be the last time I ejaculate'. At that time, I couldn't help but wonder if I was doing the right thing, consenting to treatment when I was symptom free, and agreeing to surgery which would impair the function of my bladder and genitals.    I haven't stopped being me after the op. Continence is improving now, erectile function recovery has a longer timescale, so it's too early to mourn that one.  It's not easy for me to accept change, but I deal with it each day, not always successfully. I made the right decision.. Yesterday my post op PSA test came back with an optimistic result.


Forgive me for sounding as if I'm judging your OH, but from what you've said it does sound like he has a tendency to catastrophise -I recognise it  as I do it myself, although it isn't likely to go down well if you tell him I said that- I'm sure you may be able to deal with it more subtly than that. It may help you to look up 'Catastrophic Thinking'  -  and see if that explains how he's dealing with stuff . You might be able to  quietly challenge some of those preconceptions, bit by bit. Comparing Prostate cancer to loss of sight, talking of the Abyss etc makes me think that's where he's at. He sounds very 'worst case scenario'.. 


I wonder how he dealt with the knowledge that he had cancer 2 years earlier, and what happened during those 2 years? I think that if it's the first major illness, then maybe it can hit harder than in someone who has known from an earlier stage that their body is fallible. With treatment looming large, what was once just passive monitoring for an uncertain future, suddenly becomes the present.  The prospect of  cancer, incontinence and erectile dysfunction is frightening. He has cancer- with treatment he may get rid of it. The side effects of treatment are variable.


It is often forgotten, that for all sorts of reasons not including prostate cancer, in the middle aged male population, cancer is common, incontinence is common and erectile dysfunction is common.  There's an awful lot of people out there getting on with their lives with this sort of stuff. It's not the thing itself that necessarily bothers us , but the opinions we have about the thing- (I think it was Lao Tzu said that one).


Facing the operation I did entertain the thoughts 'I will develop terminal cancer, I will be totally incontinent, I will have no erectile capacity whatsoever. Having thought it, I realised how ridiculous that sounded. Having that  knowledge doesn't always  stop me being self pitying though. 


Jillyd has mentioned the importance of support  for both of you. I couldn't agree more. 


..and continue to post here. You might get all sorts of nudges in the right direction to help your journey. 

User
Posted 30 Mar 2016 at 13:54

Dear BJS,

I am sorry to hear about your situation. It has been very frightening for you to hear your OH say that.
All his and your feelings are legitimate, though, and it is good for him that he can talk to you and dare to express something of how it feels for him. Try to stand firm enough to hear it. By all means share your feelings too - perhaps at another time so it doesn't sound to him as if you are rejecting his.
The way we feel can change - I have found my own mood quite changeable, from feeling overwhelmed by what seems an unremitting decline, to embracing a challenge and doing whatever can be done for the positive given the circumstances.
I share with your OH a sense that sex is one of the most important parts of life. I am one week post-op and really hoping to get my erections back. My partner and I will have to communicate about alternatives to our usual sexual routine, which will be hard to do.

Henry

User
Posted 30 Mar 2016 at 13:56

thanks you all for your responses and comforting words. Walnut55 you are very perceptive!! Yes, I think he does catastrophise - always has and it's long been a conflict between us. He says one can only make a decision basing it on the worst possible outcome, I say why put yourself through the angst when it might not happen. He coped really well on active surveillance as he could compartmentalise and not think about it between PSA tests. But I sometimes think he thinks he is the only person who this could happen to (not cancer particularly but dealing with life-changing aftereffects of illness/treatment) as he says he doesn't know of people suffering after-effects of illness but I pointed out that people do NOT talk about it usually. We don't know what other people might be experiencing and coping with on a daily basis.
He is going out a lot, seeing friends and keeping busy etc when he feels well enough, as he is retired, and I'd rather he did nice things than deal with household stuff but I am still working and finding the burden of everything rather too much. Maybe I am also guilty of encouraging his thoughts about doing things now because you might never be able to do them again - which I DO NOT believe
Great news re your post op test walnut55, hope things continue to improve for you.
Thanks again

User
Posted 30 Mar 2016 at 15:53

and good luck with your recovery to you too Henry :-)

User
Posted 30 Mar 2016 at 18:37

hi have read through all the comments, am sorry for how you OH feels, not much I can add to what has been posted, but does your OH have a close friend or family member you can get to talk with him, at times it takes ages for some to accept how we are, re your nurse I have no confidence in mine who told me one thing when given my results then denied it later


my wife had a tough time accepting it so all the info I had received ie toolkit they where just left in a place where should could find and read when ready


regards


nidge


 

Edited by member 30 Mar 2016 at 18:38  | Reason: Not specified

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 30 Mar 2016 at 20:51
BJS

You sounded like you were describing me 27 months ago. On DX I was told if we do nothing you will still be here in 10 to 15 years time,that was possibly the worst bit of advice. The first thing I looked into was what will dying of cancer be like. Surprisingly I did not find much info.

I went through the same as a lot of men, I will lose my manhood, I won't be able to make love to my wife, and I will smell of urine all the time.

Fortunately I saw some sense and after waiting for four months for new robot to be built had a RARP. I tend to procrastinate so the real decision making was done in the final weeks before the OP. I can be the profit of doom and gloom but things were not as bad as i thought they would be,post op I was almost dry after 4 days.

I have had an interesting journey but I have no regrets and I would do the same again.

I never imagined I would openly talk about ED and incontinence to people but I now tell complete strangers my story.

The ED journey is still work in progress but we have had fun trying solutions and although ejaculations do not happen orgasms are out of this world.

A couple of things helped my decision to have treatment,I spoke to a few guys who had surgery and there outcomes were positive, the wife also told me I was being selfish, which I now think was true.

My uro/onco nurses were great as are the nurses on this site. Our local Prostate support group was also a help.

Hope you find a solution.

Thanks Chris
Show Most Thanked Posts
User
Posted 30 Mar 2016 at 11:06

Hi - I am also a partner of someone with prostate cancer (in my case my fiance's cancer is advanced). I am answering this not because I have lots of expertise (I am learning on my feet!) but because I have a couple of suggestions that may be of use and hopefully it will also help bring your post to the attention of someone who can help more.


If your OH doesn't feel able to join this forum - no matter, you're here! You will be able to find tips etc. that could be of use to him and help him in that way. My fiance can't relate his cancer to others' and finds success stories unhelpful and I can't see him joining here either at the moment (perhaps our OHs are still adjusting to the news?). 


Try talking to one of the nurses on this sites helpline - I'm sure that they will offer you advice on where to go from here.


It sounds to me that your OH could do with talking to someone, although not all men are willing, but perhaps you could talk to him about it?


You could also do with someone to talk to - I felt completely overwhelmed at first and scared (still do from time to time but  it's getting better)and I found that even just one session with someone from MIND helped me. Mutual friends have helped me too. 


If you're having trouble getting in touch with your specialist nurse perhaps you can raise this diplomatically at your next meeting or if you do get in touch with them? Find out less busy times or an alternative contact as examples.


Feel encouraged that your OH is talking - I'm guessing that he is saying things to you that he wouldn't say to some other people and that in this way he is getting some of his emotions and feelings out (even though it is so hard for us too see our loved ones go through this). You have told him that you will get through this together and I think it will be helpful for him to hear this as he will know that he is not alone.


Also, remind him that if he is having an LRP then this will be with the intent of curing the cancer I believe which is good news really and why he was taking a wait and see approach in the first place. In the grand sceme of things he is now at plan B and not plan Z!


What about the two of you getting out to do something so that you can both have a break from thinking about things if you are able? 


Hope this helps!

User
Posted 30 Mar 2016 at 12:44

BJS your husband's reaction is not uncommon and as with Jilly's other half,mine won't use the site either.

It's a very difficult time for him (and you,I know) and I don't suppose anything you say will make him come round. As he sees it, his life is in ruins because he's going to be incontinent, will never get another erection, will never be intimate with you again.

Those are all the things he is focussing on and I really don't know how you can get round this, except be a bit firmer about how it is for you. Has he thought of that, looked at the other side of the coin? It's selfish on the part of our men to see this only as affecting them. If we love then we hurt too.

So he'd rather do nothing and risk not being around to grow old with you. Have you pointed out that choice is his choice but that you would rather have him around for years and years even if life is different.

It will be hard to convince him that all the things he's frightened about - and he is - doesn't mean that you will love him less or that he will be less of a man.

You are in this together. If your marriage was strong before then this won't break it. Might dent it a bit but hopefully you'll come out the other side stronger and as loving if not more.

Not all the side effects that can happen do. Some men recover very quickly, some less so. Perhaps once the operation is done he will get his head round recovery and doing the best he can to regain everything possible.

If you go to publications on this site, you should be able to find leaflets on pelvic floor exercises and ED etc. They may help answer some of his fears.

As for lack of communication with his nurse, we were abandoned to - at least that's what it felt like.

You've found us now, so even if the other half won't talk to us, you can. We'll do our best because we're all in this together

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 30 Mar 2016 at 12:48

Hi BJS- 


Sounds like you're in a  tough place right at the moment- but it also sounds like you see it as it is. Keep that in mind. The fact that you've joined here speaks volumes.


I'm 6 weeks after an op now. Yes, things have changed. With my op date looming, I remember thinking 'this'll be the last time I ejaculate'. At that time, I couldn't help but wonder if I was doing the right thing, consenting to treatment when I was symptom free, and agreeing to surgery which would impair the function of my bladder and genitals.    I haven't stopped being me after the op. Continence is improving now, erectile function recovery has a longer timescale, so it's too early to mourn that one.  It's not easy for me to accept change, but I deal with it each day, not always successfully. I made the right decision.. Yesterday my post op PSA test came back with an optimistic result.


Forgive me for sounding as if I'm judging your OH, but from what you've said it does sound like he has a tendency to catastrophise -I recognise it  as I do it myself, although it isn't likely to go down well if you tell him I said that- I'm sure you may be able to deal with it more subtly than that. It may help you to look up 'Catastrophic Thinking'  -  and see if that explains how he's dealing with stuff . You might be able to  quietly challenge some of those preconceptions, bit by bit. Comparing Prostate cancer to loss of sight, talking of the Abyss etc makes me think that's where he's at. He sounds very 'worst case scenario'.. 


I wonder how he dealt with the knowledge that he had cancer 2 years earlier, and what happened during those 2 years? I think that if it's the first major illness, then maybe it can hit harder than in someone who has known from an earlier stage that their body is fallible. With treatment looming large, what was once just passive monitoring for an uncertain future, suddenly becomes the present.  The prospect of  cancer, incontinence and erectile dysfunction is frightening. He has cancer- with treatment he may get rid of it. The side effects of treatment are variable.


It is often forgotten, that for all sorts of reasons not including prostate cancer, in the middle aged male population, cancer is common, incontinence is common and erectile dysfunction is common.  There's an awful lot of people out there getting on with their lives with this sort of stuff. It's not the thing itself that necessarily bothers us , but the opinions we have about the thing- (I think it was Lao Tzu said that one).


Facing the operation I did entertain the thoughts 'I will develop terminal cancer, I will be totally incontinent, I will have no erectile capacity whatsoever. Having thought it, I realised how ridiculous that sounded. Having that  knowledge doesn't always  stop me being self pitying though. 


Jillyd has mentioned the importance of support  for both of you. I couldn't agree more. 


..and continue to post here. You might get all sorts of nudges in the right direction to help your journey. 

User
Posted 30 Mar 2016 at 13:54

Dear BJS,

I am sorry to hear about your situation. It has been very frightening for you to hear your OH say that.
All his and your feelings are legitimate, though, and it is good for him that he can talk to you and dare to express something of how it feels for him. Try to stand firm enough to hear it. By all means share your feelings too - perhaps at another time so it doesn't sound to him as if you are rejecting his.
The way we feel can change - I have found my own mood quite changeable, from feeling overwhelmed by what seems an unremitting decline, to embracing a challenge and doing whatever can be done for the positive given the circumstances.
I share with your OH a sense that sex is one of the most important parts of life. I am one week post-op and really hoping to get my erections back. My partner and I will have to communicate about alternatives to our usual sexual routine, which will be hard to do.

Henry

User
Posted 30 Mar 2016 at 13:56

thanks you all for your responses and comforting words. Walnut55 you are very perceptive!! Yes, I think he does catastrophise - always has and it's long been a conflict between us. He says one can only make a decision basing it on the worst possible outcome, I say why put yourself through the angst when it might not happen. He coped really well on active surveillance as he could compartmentalise and not think about it between PSA tests. But I sometimes think he thinks he is the only person who this could happen to (not cancer particularly but dealing with life-changing aftereffects of illness/treatment) as he says he doesn't know of people suffering after-effects of illness but I pointed out that people do NOT talk about it usually. We don't know what other people might be experiencing and coping with on a daily basis.
He is going out a lot, seeing friends and keeping busy etc when he feels well enough, as he is retired, and I'd rather he did nice things than deal with household stuff but I am still working and finding the burden of everything rather too much. Maybe I am also guilty of encouraging his thoughts about doing things now because you might never be able to do them again - which I DO NOT believe
Great news re your post op test walnut55, hope things continue to improve for you.
Thanks again

User
Posted 30 Mar 2016 at 15:43

My take is slightly different, having been through it the opposite way round. My OH rushed far too quickly into the treatment, believing that all the side effects were things that happened to other people and would not affect him. He has spent 5 years wishing he hadn't had the treatment, he says he wishes he had gone for a shorter life without the side effects. This is partly due to the fact the op didn't give him that hoped-for 'cure' and he ended up having salvage treatment anyway.

He was one of the lucky ones on paper - no incontinence and a functioning erection - but he is changed forever and our life will never be the same again. I suspect your OH will cope better for recognising the possible reality beforehand and then finding it not so bad after all. The ones who seem to struggle are those who didn't know about the possibility of side effects or didn't fully understand how it would be.

He doesn't have to go ahead with the op - I would hope the surgeon would be agreeable to a delay while he thinks it through some more. Has he seen an oncologist about possible alternatives such as brachytherapy, HIFU or external beam radiotherapy?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Mar 2016 at 15:53

and good luck with your recovery to you too Henry :-)

User
Posted 30 Mar 2016 at 17:03

thanks Lyn, The oncologist (and just about everyone else) recommended surgery rather than RT etc because of poor flow but we have an appointment with another consultant next week as I want to rule out HIFU - not mentioned by NHS consultant so I sort of assume he might not be suitable. As I think he is harbouring a prostate infection they might not do the surgery on the planned date anyway and on that day the junior docs are due to strike so that might also cause postponement. I have said to him that he doesn't have to go ahead if he needs more time - he can't be forced! He is just so positive to everyone else, even the docs, so no-one knows how sh1t this all is in reality. I wish he was more honest
And regarding trying to get in touch with the hospital! It became so frustrating that he actually went there today to arrange to see someone. I am so shocked about their lack of support for someone with cancer
I am so sorry to hear that your OH feels like that after surgery (though it is familiar and I quite understand it) and needed RT as well. Must be desperately hard for both of you

User
Posted 30 Mar 2016 at 17:23

Hi BJS
I've been thinking how to reply. I'm emotionally wrought after my journey and it's far from ended yet. Please if you can be bothered click my ugly face and read my story. People on this forum will vouch I'm the most negative member yet. I'm bipolar and was in a horrible place in life BEFORE the cancer diagnosis. I didn't want treatment , incontinence , impotence. I just wanted to be left alone. But my parents and family and wife and hospital and all the people on here urged me on.
I had radical surgery and it failed. I'm continent but fully impotent. I'm now fundamentally incurable. Do I regret my choice ? I'd love to say yes because in many ways it was a waste of time and caused so much damage. But also I'd say no because I've laid awake at night thinking what it must be like to only have weeks left.
A certain member Luther told me I should be able to look back in the future when I'm really ill , and be able to say I tried , and that I did the right thing by my family and friends. So I tried , and I agree at least I can hold my head up high.
My life has changed awfully , I miss sex , and never a day goes by where I don't think about cancer and what to do and what route to take. But my wife and I are mega close and still intimate , my little boy and my parents still have me , and I am alive. In truth I'm in a better place than I was 3 yrs ago despite the diagnosis. It's worth a try. If I did it , then I believe ANYONE can. Seriously. The alternative might seem romantic to awful pessimists like some of us , but I'm now sure it's not. This site has lost many many wonderful members. Each of them husbands and fathers. And I've seen a lot of members go in my short time on here. No-one should be in a rush to join that club. Please keep posting and you will get help. Ensure he gets the help he needs. Message me anytime
Chris

Edited by member 30 Mar 2016 at 17:25  | Reason: Not specified

User
Posted 30 Mar 2016 at 18:02

No, not hard. I was just saying how it is for him. We are very happy, and he knows he would never have made any other decision - even if we could turn back the clock he was so intent on doing it his way and nothing would have changed his mind. But with hindsight, he regrets it.

Re specialist nurse. Some people seem to have fantastic support but my husband, dad and father-in-law all had the same nurse and none of them have ever spoken to her or received a call-back, despite numerous attempts.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Mar 2016 at 18:03
I very nearly sent a reply earlier this afternoon and was about to send when I thought again and decided to cancel. Now I'm clearer in my mind about what I'd like to say. This a really difficult situation and the responses have been very supportive and informative.

All I can say is that I was in shock like so many of upon dx. I was told to expect surgery but in the end this was not possible so I went the HT/RT route.
The approach I took was to try to be as positive as possible. I wanted to make sure that all my family, friends and colleagues at work found me approchable and could feel able to talk to me at anytime about what I was going through. And they did. I had marvellous support from everyone and still do.
However there have been the inevitable dark days and I really dislike the HT. Some times I have felt sorry for myself , but not very often now. One colleague told me that I made having cancer sound like fun with the stories I told regarding procedures etc. I had people on my side, laughing with me and not avoiding me.

I posted very recently that when asked how I felt upon dx how did I feel. I said 'Lucky - fortunate that's it's been found and that I have the opportunity of treatment.'
Some cannot understand this at all. But I chose to treat all the scans and other procedures with interest and intrigue. Almost like a third party - a work project, if you like - except it was personal to me.
It helped take my mind away from the reality that if I wasn't going to be treated then I had between 5-10 years left. ( my wife asked the Onco directly re life expectancy).
I'm almost 2 years since dx. I haven't regretted anything. If my Psa levels rise upwards from my current 0.2 and I require salvage treatment then at least I know I've been chances of survival.
And I like living. I love my family . I have good friends. I'll do anything to stay with them. And tell your husband that his tennis friends need him to make up a 4!!!!!

John

User
Posted 30 Mar 2016 at 18:26

interesting to hear that other people have issues with their specialist nurse. We were beginning to feel victimised! It all sounds so good at the start when you are told this person will always be there for you, to answer questions and steer you through. Ha bloody ha
We did complain to the urologist (nicely of course!), while the nurse was in the room and doc didn't seem surprised and ticked nurse off gently and suggested nurse did better! Nurse then said that he'd been busy! Oh dear, so NOT our problem! Anyway I spoke to an amazing nurse (he actually phoned me back!) at the referral hospital today - a breath of fresh air - and OH also managed to get an appointment to see a urologist tomorrow

Chris, sounds like you've really had it tough and I appreciate you posting
John - my OH is playing tomorrow (even if he feels ill I will push him out the door - its therapy)

Thanks all, it genuinely helps. Just wish he was ready to get the same level of support but maybe it will come in time

User
Posted 30 Mar 2016 at 18:37

hi have read through all the comments, am sorry for how you OH feels, not much I can add to what has been posted, but does your OH have a close friend or family member you can get to talk with him, at times it takes ages for some to accept how we are, re your nurse I have no confidence in mine who told me one thing when given my results then denied it later


my wife had a tough time accepting it so all the info I had received ie toolkit they where just left in a place where should could find and read when ready


regards


nidge


 

Edited by member 30 Mar 2016 at 18:38  | Reason: Not specified

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 30 Mar 2016 at 20:51
BJS

You sounded like you were describing me 27 months ago. On DX I was told if we do nothing you will still be here in 10 to 15 years time,that was possibly the worst bit of advice. The first thing I looked into was what will dying of cancer be like. Surprisingly I did not find much info.

I went through the same as a lot of men, I will lose my manhood, I won't be able to make love to my wife, and I will smell of urine all the time.

Fortunately I saw some sense and after waiting for four months for new robot to be built had a RARP. I tend to procrastinate so the real decision making was done in the final weeks before the OP. I can be the profit of doom and gloom but things were not as bad as i thought they would be,post op I was almost dry after 4 days.

I have had an interesting journey but I have no regrets and I would do the same again.

I never imagined I would openly talk about ED and incontinence to people but I now tell complete strangers my story.

The ED journey is still work in progress but we have had fun trying solutions and although ejaculations do not happen orgasms are out of this world.

A couple of things helped my decision to have treatment,I spoke to a few guys who had surgery and there outcomes were positive, the wife also told me I was being selfish, which I now think was true.

My uro/onco nurses were great as are the nurses on this site. Our local Prostate support group was also a help.

Hope you find a solution.

Thanks Chris
 
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