Don't know what to say or where to turn

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!

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. 

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

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

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

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

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