Becoming distant since husband had prostate removed

Hello dobbie florence 

A warm welcome to the Macmillan Online Community, although I am so sorry to find you here under these circumstances. I am Brian one of the Community Champions here at Macmillan.

I haven't had surgery - I have been on Hormone Therapy for over 3 years. from a male point of view yes, I miss penetrative sex, I have no libido and to be honest I have missed sex - but I realise that now I am off treatment, things will improve. (they are doing but very slowly). But that's me.

Your husband is very "early doors" with his treatment, the trick here is to recover first and worry about regaining an erection second. Don't even go there at this time - recover from the surgery, do the pelvic floor exercises and once he's feeling that continence has been regained - we can help in regaing what he had.  Sadly recovery from Prostate Surgery is a marathon, not a sprint. 

Again this is a personal view (not Macmillan) - He's a man, we are the breadwinner, the head of the household, and to lose the ability to have an erection - well - am I a man? He's feeling very low but at the end of the day there are only 2 people who know this. His ego has gone and he needs support. (one in two people with a cancer diagnosis have mental health problems). you are NOT to blame but he needs love, re-assurance and support. I don't know your personal circumstances but that's how I see it from a man's point of view - I am sorry if you think I am blunt!!

I have resources available to help him - but he must want to be helped. 

I would encourage you to ring our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) - it's there for both of you and you will get some fantastic support there.

I do hope my post helps - if i can do anything for you please do get back to me.

Best wishes - Brian.

Hello dobbie florence 

I have not had this specific surgery, although it is definitely an option for the future.  However I have had surgery to reduce the size of my prostate, which was about 4x the normal size, but about 50%.  Even so, that surgery was very much less impactful than a prostatectomy, with near-zero probability of ED, and my total recovery time was approaching 4 months.  

Your husband's surgery was only two weeks ago, so I'm guessing that his catheter removal may have been only a week or so ago.  So his physical recovery process has barely started, and is likely to have quite a way to run, and his psychological healing progress will probably be very much dependent on that physical recovery. 

Which is rather a long-winded way of saying that two weeks is a very, very short period of time in which to base your understandable fears.  IMHO, even 2 months is a very short time for that.

The very positive thing here is that you obviously have a very close bond, and both of you want the same outcome, and that's great, as not all couples, even if married for a long time, necessarily have that goal.  So my (very amateur) suggestion for the near term would be to give things time and if necessary a bit of space. 

Hopefully that will bring some 'victories' in terms of regaining urinary control (assuming of course that that is still in the future), and general health / fitness, which will lead in time to success in terms of regaining affection, libido and potency.  

Thanks for sharing, and best wishes.  Peroni.  

Thank you so much Brian, your response has really helped. I think we are both struggling with our intimate loss and in a way it feels like a form of grieving. Diagnosis to treatment has been so traumatic, waiting for results, bone scans etc I’m fearful for the future and don’t easily adapt to change and suffer with my own mental health coupled with the menopause emotions are all over the place. 

Hello dobbie florence and welcome from another wife. Your husband has been through a major operation which is going to take him a while to recover from both physically and mentally but you also have had a massive shock so don't feel bad that you are having difficulty coping with the changes which have been thrown at you. You quite naturally want reassurance that your husband will recover and that he will be free from cancer and back to his old self but by the sound of it there is also the fear that this might not happen. There are many types of intimacy and yes, as a wife we have had to work together to ensure that we both feel we are loved and cherished but it takes time to find the right balance. My husband is on lifetime hormone therapy but I can say that we are now closer together than ever as underlying everything is the fact that we still have each other and he is still alive. What's done is done and you have to now go forward to work towards what will hopefully be a full recovery. Just take things slowly and remember that your health is also important and get help for yourself if you need it.

Hello dobbie florence ,

I am sorry to hear of your problems relating to intimacy. It is hard.

My wife and I came to a similar position though not quite in the same way, and over a longer period.

She has a gynae problem which, whilst treated to retain really good quality of life in most areas, meant that penetrative sex was such a faff that intimacy was really ruined. A mechanical act was not what either of us signed up for.

So, when I was diagnosed with prostate cancer, and the hormone therapy meant that my genitalia completely forgot a major reason for their existence, we were already a long way towards coping with it.

I have no doubt that both of us with difficulties helped us tackle this.

Speaking, as Brian did above, purely from a man's point of view, many men place a lot of their identity in their sexuality. If that goes, then there are many difficulties to overcome mentally before they can recover. It will take time but it can be done.

In the meantime, there are other ways to comfort one another, and be close, possibly closer than before. 

Since I was diagnosed I have lost count of the number of times we have fallen asleep in each others arms. That was rare before. We listen to each other. In some ways all of this is much more important than "just" sex. 

We have found that, once again, we belong together.

Whatever happens, try to make coming through all this not just a restoration of what was, but a development of something new.

Thank you so much for your response it’s certainly feel less alone. My husband is notoriously difficult to talk to, I’ve tried to explain to him how I’m feeling and he just thinks I’m being over sensitive. He left last night and won’t even talk to me, I’m struggling to do every day jobs, I can’t seem to eat and have lost so much weight just in 2 weeks. We just can’t communicate without it going into an argument. 17 days ago we were so in love  now it’s seems we don’t even know each other. I think I need to get some help, I’m having surgery in 2 days and I don’t really think I’m fit for that either. I just can’t seem tto come to terms with the loss. I think I’m actually in shock of what’s happened and so quickly, I’ve been reading so much and it seems a lot of partners feel this way and it’s been described as a ‘couple disease’ and I see that. I’ve fearful for the future and honestly struggle to see how we can recover from this. Thank you again for your lovely message 

Thank you Steve and it’s comforting to know we can get through this as you have. I don’t think it the act of ‘sex’ that’s bothering me as much as what that special time meant to me/us, the comfort, reassurance and closeness. We’ve been together along time and I’m not coping with all these changes and wasn’t prepared for this detachment that I’m feeling. At the moment I’m struggling to accept a cuddle from him as I just cry, it feels like I’ve lost all of him or maybe that’s me just not accepting the change, I’m not really sure what’s going on my emotions are all over the place. I’m sad, angry, not engaging with life it’s just taking over my life. Thank you for sharing hoe it feels from a man’s point of view that’s really helpful. My husband is very quiet, he never even told his family of his diagnosis. He won’t sit and talk to me, he just leaves (as he did last night and hasn’t come home) and won’t answer my calls. Maybe we both just need time to absorb this shock I’m not sure what to do really, I just things back hoe they were 17 days ago 

Hello again. You are in shock and grieving plus you have an operation to cope with so are you going to need someone to look after you and run the house whilst you recover? Can I suggest you speak to someone on the support line number that Brian has given you in order to help you into a calmer frame of mind so that you can deal with the operation and your own recovery. When I am really upset I just want to draw into myself and be left alone but deep down I need a cuddle so I do recognise the mixed and very muddled emotions. 

Thank you Peroni, I think you’re absolutely right we need time to absorb what has happened as we are both struggling  with our emotions and need to come to terms with our loss. We love each other so much and so much to look forward to,  We have bearly said a word to each other over the past 2 weeks, I’m finding just looking at our bed makes me cry as that is where the loss is so I’ve been sleeping in the spare room, I just can’t go into our bed with him I just cry tand he doesn’t know how to deal with it so turns over and then I feel even more iisolated and alone. I’ve never experienced anything like this and wish I had been more prepared, I feel he’s just shutting me out and I feel like I’m grieving for a post relationship, which is crazy we were so close just a few days ago. I have managed to get an appointment with a councillor to Otto but my Shia and doesn’t want to be part of it! I do fear all this will drive us apart. Thank you again

Anita

Hi dobbie florence ,

as a wife of 53years it’s hard to get your head around the C word to start with . Then bombarded with whatever they offer and try and digest it  while making life changing decisions . Both of you are in shock and feel totally out of your depth no doubt. 

i am so glad you have reached out on this great forum as everyone will give you information and support . I could not function and this great bunch helped me and OH ( husband)  as we are on a palliative treatment pathway. 

I often have to put my big pants on and smile trying to just have a normal day but inside my heart is breaking as it certainly is a couples disease.  .  We have been a very close couple physically but we are finding other ways to be close due to his treatment .  We attend our  local Maggie Centre and they have been good just listening to our anxieties and no judging . Although OH  wasn’t keen . He now says it’s time for a visit . 

Yes it’s good to talk but it’s also good to just cuddle up and say nothing . Just remember it’s very early days post surgery as even although the scars heal there’s a lot of healing work going on inside . 

i am sorry to read you are also having surgery and hope it goes well .  

Hugs to you both 

Liz & OH xxx