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Partner newly diagnosed but will not talk about it

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User
Posted 18 Mar 2021 at 14:26

Hello everyone,

I’ve just signed up to this site as I don’t know what else to do and have nobody to talk to who can possibly understand. I am 41 and my partner is 55 and has recently been diagnosed with prostate cancer (Gleason score 7). His Dad died of prostate cancer, so we have known this was a possibility but it was only due to a routine surgery that this was diagnosed last November as my partner would never go to be checked out. Frustrating in itself. We have been together 5 years and I don’t have children - he has two grown up children from a previous marriage, who I get on really well with thankfully as they are the only other people that know about this. He has said he doesn’t want anyone else involved.

He has been advised that surgery is the best option, which we both agree with. No point messing about. He’s been to see the consultant today, and obviously been told it’s the worst possible time to need healthcare. The surgeon said they would ideally like to do the op within 6-8 weeks but it’s likely to be in three months or longer so he will need to go on hormone therapy eventually. The side effects of everything sound horrendous and I’m so worried how we are going to get through it all, as he point blank refuses to talk on an emotional level about anything or discuss anything that is in any way negative. We had already not had sex for a year which I was worrying about and thinking it was me or the fact he was unhappy in the relationship, but everything else is good. We laugh and chat all the time, even though we’ve been glued together through lockdown. He finally did say the other week that he ‘leaked’ a bit so that was why he didn’t come near me, but that is the only thing he’s ever said about it. I’ve read a lot about partners completely disengaging from any kind of intimacy and this is exactly what has happened with us. He literally refuses to even cuddle me in bed.

I feel so incredibly lonely and unloved. I tried to talk to him again but he literally just walks away and then I feel selfish because this is actually happening to him and he needs support too. I also get upset which he really hates. I don’t really know what advice I need as have seen so many comments related to this. I know I need to get him to talk about it, but he won’t despite my best efforts. I’m only 41 and am not ready to accept the fact I’m in a no-contact relationship. As I said to him, I’m genuinely not bothered about sex - I just want to be able to cuddle, kiss and have some form of physical contact. We are the best of friends but starting to feel like housemates, which will only get worse as we go through this experience.

Thanks for bothering to read this as I know there are hundreds of threads x

User
Posted 20 Mar 2021 at 01:20

I don't often come on here any more, having lost my husband last year but I just wanted to say that your husband is probably processing the news that he has cancer in his own way and it is normal to feel shut out.  I went to every appointment with my guy and we got  through it all as a team. He left it to me to find more out but it might be worth asking your husband if you could accompany him just in case he misses anything important that is said. It is easy to mishear or not ask questions. My husband was incredibly brave for almost ten years and we had periods between treatments when our life was normal. We talked and enjoyed our time together throughout those precious extra years but gradually the desire and ability to make love vanished ,  We maintained a close and loving relationship but we were older so perhaps it wasn't the most important thing to us to have sex.

People have mentioned your husband being controlling, but is he in other areas too? He may feel he has to protect you from it all and his way of facing it is with a laugh and to keep things normal.

Try to explain how it makes you feel. He may have a low sex drive anyway or may be hiding feelings of depression at reaching midlife or even issues at work. Some people do mask their true thoughts or others can only cope by treating it lightly.

I wish you all the best, whatever happens and remember many men live a long time with the right treatment. Life can be good again. We were still able to have a laugh, even in the last few months and enjoyed some great holidays that will live in my memories.

 

 

 

 

Edited by member 20 Mar 2021 at 01:25  | Reason: Not specified

User
Posted 22 Mar 2021 at 11:46

It's heartbreaking for you, MCD, but you've kicked off a very good and valuable discussion.

It's amazing how much easier it is to talk while walking - getting out of the home environment and being side by side rather than having eye contact (or not) helps with the difficult stuff, doesn't it?  

I guess a counsellor would say that your man is grieving for himself, for his father and for your relationship as it was.  Not many people have been at their best these last twelve months, and he's processing it in his own way (possibly in the same kind of way his dad did, if he was anything like some men of that generation I've known). 

Everyone knows that a positive attitude is important to your health, and probably everyone appreciates that it's healthier to talk, but it's not so easy to do what he should if he is angry, frightened, worrying about something else or whatever.  It's unlikely he's going to move on much until he's had his treatment and (we very much hope) had positive news from the consultant afterwards.  One day he'll be glad that he is in the care of experts, rather than burying his head in the sand - and that you gave him so much support.  Tell him from us how lucky he was! 

I can tell you from experience that it's easy to tell the world good news and not want to share the bad.  Because of their own worse health, I haven't yet told my sisters about my cancer, a year on (or any friends).  I've now written to the sisters and said I'll call this week, and I'll mention it to friends when we can see them again (on a walk!)

So, thanks for getting me talking, and I / we wish you the very best of luck with the next stage and for the future.

KC

RP 07.03.20, PSA 4.1, Gleason 3+4=7 

User
Posted 18 Mar 2021 at 16:22
If I’m totally honest I feel that after surgery and the inevitable side-effects , that he will just withdraw further into himself. The side effects are debilitating to even a positive minded person , and if he doesn’t actively engage in recovering sexually then he may never recover at all. The fact you haven’t had sex together for a year nor any physical contact is likely to get worse. Sorry if I sound negative but I’m being honest.

The only way through this is with plenty of love and support and trust and ESSENTIALLY talking together. Strange how outside of the bedroom he is such a chatty soul-mate. The only thing I can suggest is that he has councelling or you have joint councelling.

Yes he deserves pity and love and support , but if he won’t open up to you then you’re stuck in a horrible position at 41.

All the best

User
Posted 18 Mar 2021 at 18:02
ProSixty - So lovely you and your wife are so close and working through it all together. A sense of humour is v important. Think we’ve got a while to go before finding it related to this subject. My partner is so stubborn and will think he can do it all on his own. My worry is he is going to shut me out to such a degree that he will literally be on his own when I can’t cope with being pushed away any longer. It is comforting to communicate with people who are having similar experiences. At least I can release some pent up emotions.

Take care and I hope you continue to improve.

User
Posted 18 Mar 2021 at 18:33

Re the NHS situation at the moment and probable delays. Don't forget that with PC it is usually a slow cancer generally (compared to other cancers) and with a G7 score he is intermediate. Other people will probably comment with more detail and knowledge on this. But I think that you should not be unduly worried of the clock ticking down fast in your situation

Also regarding your comment on the delay and possible hormone therapy. I think that Prostatectomy outcomes do not usually require prior hormone therapy. This is usually for people recommended to the RT route.

User
Posted 18 Mar 2021 at 18:33
Well psa 6 ? Gleason 7 , in my limited knowledge that is not the end of the world , ok 55 is young for those figures , they were my basic figures and I was 65 , let me assure you you will both get thru this , this is a most common cancer , many of my friends have it ! I took solace in my mate who add it several yrs ago and is still fighting fit ! We’re you not given other treatments options RT/HT etc ? I had HT/RT , some side effects but they were deffo not horrendous at all , and 2yrs down the line my psa 0.14 . This is a very informative site please don’t get tempted into looking on dr google , this site and NHS site is all you need and Macmillan are great for information .
User
Posted 18 Mar 2021 at 20:19

MCD

This is part of a post to a guy on here a few years ago,it describes the early part of my journey.

I went to all my pre diagnosis and pre op scans and appointments alone, it was my problem, my body and my decision. Not proud of it but I sent my wife a text to say I had been diagnosed with cancer. I did not want to discuss the problem with her but was quite happy to talk to work colleagues and strangers with prostate cancer. Speak to the specialist nurse on this site , the number is at the top of the page , they may be able to put you in touch with a "buddy" who has gone through the same journey. In hindsight not involving the wife was the wrong approach and I would have struggled post op to care for myself. So get you wife involved.

 

I had four months to make my decision to have treatment or not, but the final decision was made whilst sat on the anesthetic room table 10 minutes before the op. A few weeks later I wondered why I had even considered not having treatment. Like you my main worries were ED and continence followed by cancer. My surgeons main concerns were the reverse of my thinking.

 

The ED can be overcome with various options and it can be tremendous fun trying to solve the problem. Incontinence can be depressing but surgical techniques have improved and incontinence is not guaranteed. I was initially almost dry 4 days post Catheter removal.

 

I wasn't mentally ready for the op, why do I want to put my body through an op that will change my life, I am not ill ? Imagine a few years in the future without any treatment and facing a potentially painful death and wishing you had chosen to have treatment. I was not particularly fit, I had lost over a stone but you cannot do a great deal between now and the proposed op date.

Sometimes we men just need a kick up the backside.

Thanks Chris

 

User
Posted 19 Mar 2021 at 14:36

Hi everyone, really overwhelmed by all of the responses and it's really helping me to get my head round everything. I only hope my partner sees that there is help out there for him too.

colwickchris - thanks for posting your thoughts. My partner is dealing with things in a similar way to how you tackled it to begin with. At least you realised you needed your wife in the end! Early days for us so hopefully we will work through it and he will come round to involving me more. The trouble is with Covid, he can't take anyone to appointments anyway so he has a real excuse to go on his own. 

Barry - I appreciate your message, but at this point he would hit the roof if he knew I was even on this site, albeit anonymously. He's a very private person and doesn't want everyone to ask him how he is all the time. I'm already picking up a few things I hope to drip into conversations with him that he can ask his consultant about. Thank you.

Lyn - Yes, I agree it could be seen as controlling behaviour. I've got lots to think about and hope we can find a way through this, but if he can't or won't involve me it won't be possible. And yes, I probably was garbling about the hormone therapy. The surgeon said that if the operation couldn't be done within the next few months he would need to go on hormone therapy to control the cancer in the interim.

Dave - thank you for your message too! I will keep posting as it does feel better to hear other people's thoughts and feelings. My partner says she is just getting on with it - but he's getting on with it in his own man cave which isn't really dealing with anything! Only time will tell.

Take care, everyone x

 

User
Posted 19 Mar 2021 at 17:31

Originally Posted by: Online Community Member

Barry - I appreciate your message, but at this point he would hit the roof if he knew I was even on this site, albeit anonymously. He's a very private person and doesn't want everyone to ask him how he is all the time. I'm already picking up a few things I hope to drip into conversations with him that he can ask his consultant about. Thank you.

I suspected this might be the case and you are right that there are quite a number of men who act in the way your husband has when faced with PCa.  Women are far more proactive when it comes to health matters and as we have found on this forum there have been a number of cases where the female has persuaded her partner to get checked for PCa in the first place and then researched the subject and in need follow up treatments for him.  I do not wish to ask you to say more than you want to volunteer but it seems from what you say that that there was less intamacy  for quite a time prior to your husbad's diagnosis which may or may not have added to the situation. It really is important that you come to an understanding, either just between the two of you or in need initially through a third party, ideally somebody experienced in this sort of situation.  My wife and I used 'Relate' many years ago when we sort of grew apart for a whileand this had nothing to do with PCa.  But sort it as soon as you reasonably can! 

Barry
User
Posted 19 Mar 2021 at 19:17

Hi MCD, it is no doubt blindingly obvious to you and everyone here that it would be so much better if your partner "came out" about cancer. We wouldn't all be here on this forum if we weren't inclined to be open about cancer. However there's only about 100 people active on this forum and 48,000 men a year are diagnosed with PC so I guess only about 0.2% of people want to "come out" on the subject.

Until I was fully diagnosed I only told a few very close friends there may be an issue. I would have been gutted if I had been found all clear and then felt that I had been "crying wolf". Once I was fully diagnosed, to the question "How are you today?" instead of saying "Fine" which is the only socially acceptable answer; I would say, "I have a slight problem, I have prostate cancer, I have told everyone I know, so feel free to discuss it with me or anyone else it ain't a secret. Other than that I'm fine". 

I would have hated people to look at me with pity, but I think my attitude of replying to sympathetic question like "I hope you're doing OK" (in a soft and concerned voice) with answers like "Well I am OK, but every time I go near a hospital, the doctors seem to just look around to see if there's another piece of medical equipment to shove up my a*se. I think they've got a bet on amongst themselves". I think that managed to show people they didn't need to treat me with kid gloves. Of course not everyone has my sort of personality.

Maybe your quote "A sense of humour is v important. Think we’ve got a while to go before finding it related to this subject." is a starting point. Are you treating him with kid gloves? I don't know what he is like, maybe you can start "having fun with cancer" if you can be relaxed about this disease maybe he will not try and protect you and open up. Now that you're seeing that there is a whole community of people who are getting on with their lives despite prostate cancer you can at least see that this is not the end of the world, he just needs to see the same. 

So lets hope that with a bit of nudging from you, dripping a few things in his ear, you can push him towards an open and fun future. You're the only person who knows him and can judge how to do this, but as you can see you already have a lot of friends on here to help.

(Little note for the Moderator I know you will be desperate to redact "a*se" in the sentence above and if you can get it to read as well and carry the same meaning feel free to, but please balance the risk of offending one or two people against the benefit of helping hundreds, if not thousands, or even millions 'gosh I have a big ego') 

Edited by member 20 Mar 2021 at 21:56  | Reason: Not specified

Dave

User
Posted 21 Mar 2021 at 16:09

Originally Posted by: Online Community Member
We had already not had sex for a year which I was worrying about and thinking it was me or the fact he was unhappy in the relationship, but everything else is good

Hi MCD2021,

Your situation is very hard.  I too had PC that, due to failed surgery and radiation bouts, put me on hormone therapy.  Yes, things can be hard intimately and sexually, however, it sounds like this issue began for your partner long before PC entered into the picture.  So, to me, the bigger issue is the fundamental disconnect he has with you around sex.  His PC condition is manageable, but his communication issues may not be. 

I wish you and your partner all the best, but if this doesn't change and you remain unhappy, you may have to take care of yourself by leaving him.

PS: my blog post is at https://community.prostatecanceruk.org/posts/t26825-The-rules-can-change if you want to know more about my story.

Edited by member 21 Mar 2021 at 16:13  | Reason: Not specified

User
Posted 21 Mar 2021 at 18:47
One thing you do need to be aware of is that if he does go on hormone therapy, the one side-effect of this that almost everyone has is a total and complete loss of desire for sex. It's not that things stop working, but the desire totally disappears. This won't be any reflection on you, so please don't take it as one - it's a side-effect of the hormonal changes the drugs make to a man's body, which are very similar to the menopause in a woman.

Best wishes,

Chris

User
Posted 21 Mar 2021 at 22:52

Originally Posted by: Online Community Member
We went for a walk today and he did start talking a bit more about things and what had actually happened at his appointment the other day.

This sounds like progress, and something the two of you could do again. He's been forced somewhere he couldn't handle, and it's taking him time to get his head around it, but it sounds like he's starting to do so. I'm guessing he's struggling with his own emotions, never mind anyone else's (yours), and hence shutting down. However, you may be seeing the beginning of turning the corner.

It sounds like you have offers of help to talk with him (which I'm also very happy to do). It can be useful to talk with someone he doesn't know with no emotional baggage, but who's already been where he is now. It enables offloading and talking about fears and concerns without also worrying about upsetting someone he knows (such as you).

User
Posted 23 Mar 2021 at 22:00

Just a quick addition to my post.   My late husband did start to have some Ed before diagnosis and Yes the hormone treatment stops any desire to make love but the love for each other can get stronger.

I am glad you are starting to talk to each other. We didn't tell anyone apart from our children for a long time. Even when he died some people said they didn't know he had been ill, because he always seemed so fit.

 

User
Posted 14 Jul 2021 at 15:21

Thank you so much! This support group was the first place I found in the world to get help when I was floundering after my surgery.

And on the different timescales - you are so right. One man I know, same age and fitness as me, healed his erectile dysfunction twice as fast as me, but had incontinence problems more than twice as long and severe as me. Each of us is different, and nobody else can know how hard it is emotionally to cope with whatever timescale is dished up to us.

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User
Posted 18 Mar 2021 at 16:04

Hello MCD 2021

It must be a very difficult situation for you.

We all react differently but as his partner its a big thing for you as well.

Do you know anymore about the diagnosis? 

What is his PSA reading?

Has the cancer been staged T1 or T2 etc

What were the biopsy results?

I was diagnosed at the same age- check my profile if interested to learn more

User
Posted 18 Mar 2021 at 16:22
If I’m totally honest I feel that after surgery and the inevitable side-effects , that he will just withdraw further into himself. The side effects are debilitating to even a positive minded person , and if he doesn’t actively engage in recovering sexually then he may never recover at all. The fact you haven’t had sex together for a year nor any physical contact is likely to get worse. Sorry if I sound negative but I’m being honest.

The only way through this is with plenty of love and support and trust and ESSENTIALLY talking together. Strange how outside of the bedroom he is such a chatty soul-mate. The only thing I can suggest is that he has councelling or you have joint councelling.

Yes he deserves pity and love and support , but if he won’t open up to you then you’re stuck in a horrible position at 41.

All the best

User
Posted 18 Mar 2021 at 16:39

Hi MikeW & ChrisJ, thanks so much for your quick responses. His PSA reading was 6. I’m not aware it has been given a stage. Just the Gleason 3+4. But as he won’t let me even listen in on any phone appointments I only hear what he tells me. He wants to just get on with things and pretend it isn’t happening, so not ideal for someone like me who copes by talking things through. He only wants to hear positivity.

Good to read that things are going well for you now, Mike. But as you say, Chris, if it’s like this now I can only imagine it’s going to get a whole lot worse. There is now way he’d go for counselling. He’s pretty set in his ways and doesn’t believe in mental health problems, so will have a battle on my hands to get him to acknowledge how he is feeling and to get any help. 

User
Posted 18 Mar 2021 at 17:23

MCD. I have to admit that I welled up reading your post. I think that you will find some informed comments on this board regarding PC. I had the OP May 2019. Leakage & pads - yes probably 1 a day which the Medics will say is a positive outcome for most. I do drink a lot which probably makes it worse for me than others. I have become to used to wearing pads and it is not an embarrassment. However Post Op I do think that my bladder capacity has been severely reduced. Again, something that I have learnt to live with.

ED. This is only Post Op and has required use of pump & pills. You could say that this is normal medical rehab after a big procedure - it is not really ED. I am improving and I accept that it takes time - some say 3 years. When with the Consultant and/or Surgeon pay attention to the words nerve & sparing regarding any future surgery.

In my case I am very lucky to be in a strong physical sexual relationship together with the ability to talk openly about anything. My Wife was involved with all appointments,discussions, decisions throughout the process. There are no children involved. Even with all these positives I have to admit that the whole PCa has not been an easy journey. The sexual side requires effort and a huge sense of humour.

I really wish you all the best for the future

 

  

User
Posted 18 Mar 2021 at 18:02
ProSixty - So lovely you and your wife are so close and working through it all together. A sense of humour is v important. Think we’ve got a while to go before finding it related to this subject. My partner is so stubborn and will think he can do it all on his own. My worry is he is going to shut me out to such a degree that he will literally be on his own when I can’t cope with being pushed away any longer. It is comforting to communicate with people who are having similar experiences. At least I can release some pent up emotions.

Take care and I hope you continue to improve.

User
Posted 18 Mar 2021 at 18:33

Re the NHS situation at the moment and probable delays. Don't forget that with PC it is usually a slow cancer generally (compared to other cancers) and with a G7 score he is intermediate. Other people will probably comment with more detail and knowledge on this. But I think that you should not be unduly worried of the clock ticking down fast in your situation

Also regarding your comment on the delay and possible hormone therapy. I think that Prostatectomy outcomes do not usually require prior hormone therapy. This is usually for people recommended to the RT route.

User
Posted 18 Mar 2021 at 18:33
Well psa 6 ? Gleason 7 , in my limited knowledge that is not the end of the world , ok 55 is young for those figures , they were my basic figures and I was 65 , let me assure you you will both get thru this , this is a most common cancer , many of my friends have it ! I took solace in my mate who add it several yrs ago and is still fighting fit ! We’re you not given other treatments options RT/HT etc ? I had HT/RT , some side effects but they were deffo not horrendous at all , and 2yrs down the line my psa 0.14 . This is a very informative site please don’t get tempted into looking on dr google , this site and NHS site is all you need and Macmillan are great for information .
User
Posted 18 Mar 2021 at 18:40

Hi MDC, I'm glad you are already realising how supportive this site is. Below is a link to a subject of some interest to you. I really have to emphasise that the thread is mainly about men on hormone treatment, you are already in this emotional situation and treatment hasn't started. By reading the conversation you will see how open and supportive we are.

https://community.prostatecanceruk.org/posts/t21271-Relationships

I don't know how you will get on in your relationship, but when you need to talk come to this site we will help you.

Men have different emotional responses to this cancer, anger, saddnes, etc. I'm lucky I'm indifferent to it, I just get on with my life. Your partner like 95% of men is not taking it well. This cancer really attacks the manhood, not good.

Learn as much as you can from this forum. If he opened up about this, things would be so much better but I don't think you can or should force him to open up.

Keep posting you'll feel better. 

Dave

User
Posted 18 Mar 2021 at 19:02

You aren't being selfish. This cancer is referred to as the couples' disease for good reason - he may have the cancer but your life will be directly affected.

You say he is a loving, wonderful partner but I don't think he can be, really - he sounds very controlling. Doesn't let you be involved in appointments? Won't talk to you about how it is going to affect the most intimate part of your relationship? Hasn't engaged in sexual activity with you for a year?

In all honesty, you may have to be cruel to be kind. If he will not talk or involve you now, it is going to get a whole lot worse after he has his treatment. You are too young to throw your life away for someone who will not engage with how the problem affects you. If you were hoping to have children of your own, you need an open discussion about that now as he will need to ask about sperm freezing before his op - the surgery will make him infertile.

I was 45 the week before John was diagnosed - you might find this thread useful https://community.prostatecanceruk.org/posts/m226323-One-wife-s-story-of-ED#post226323

Also, I think there may have been a bit of a typo or misunderstanding. I suspect that what he has been told is that because the op may be delayed due to Covid, they may give him hormones to control the cancer in the meantime. Not that he may need hormones eventually.

Edited by member 18 Mar 2021 at 19:03  | Reason: Not specified

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

User
Posted 18 Mar 2021 at 19:46
MCD,

You are by no means alone in the position you find yourself as we have had members similarly affected. Prostate Cancer (PCa), is a subject that some men don't wish to discuss and indeed it can change the way they relate to their partners. There will inevitably be questions you and your husband will have from which he might benefit by raising here or if he discussed with you so that you could be the sort of go between. Actually, we have many women who research and seek information on behalf of their partners but this requires the men to openly discuss the subject with them. PCa is sometimes called the couples disease because it affects both of them. One suggestion is that you contact the specialist cancer nurses on this site to get their opinion on the aspect of particular concern to you and if you feel he might do the same this might be a way forward. On the other hand, you may feel that your husband would not wish any contact and may even resent the fact that you have posted here so that is one best left for you to ascertain.

Meanwhile, you could assure him that you love and continue to support him however he is affected by PCa and it's treatment. Tell him you badly need his affection and contact, even if it is different to that hitherto, rather than penetrative sex, although even that may be possible, if perhaps helped by pills and a pump. You may have to be patient and give him time.

I hope you can come to an understanding on this otherwise feelings could fester.

Barry
User
Posted 18 Mar 2021 at 20:19

MCD

This is part of a post to a guy on here a few years ago,it describes the early part of my journey.

I went to all my pre diagnosis and pre op scans and appointments alone, it was my problem, my body and my decision. Not proud of it but I sent my wife a text to say I had been diagnosed with cancer. I did not want to discuss the problem with her but was quite happy to talk to work colleagues and strangers with prostate cancer. Speak to the specialist nurse on this site , the number is at the top of the page , they may be able to put you in touch with a "buddy" who has gone through the same journey. In hindsight not involving the wife was the wrong approach and I would have struggled post op to care for myself. So get you wife involved.

 

I had four months to make my decision to have treatment or not, but the final decision was made whilst sat on the anesthetic room table 10 minutes before the op. A few weeks later I wondered why I had even considered not having treatment. Like you my main worries were ED and continence followed by cancer. My surgeons main concerns were the reverse of my thinking.

 

The ED can be overcome with various options and it can be tremendous fun trying to solve the problem. Incontinence can be depressing but surgical techniques have improved and incontinence is not guaranteed. I was initially almost dry 4 days post Catheter removal.

 

I wasn't mentally ready for the op, why do I want to put my body through an op that will change my life, I am not ill ? Imagine a few years in the future without any treatment and facing a potentially painful death and wishing you had chosen to have treatment. I was not particularly fit, I had lost over a stone but you cannot do a great deal between now and the proposed op date.

Sometimes we men just need a kick up the backside.

Thanks Chris

 

User
Posted 18 Mar 2021 at 21:54

MCD. One of the really weird things about it when you are told that you have PC, is that there are no defining symptoms. It took me ages to get my head around it. Being told that you have cancer but that you are not sick and no different to before. Personally I refused to believe it at first. At my appointment with the surgeon, she asked whether I had any questions and and I suggested and asked if there had been a mix up - unfortunately not. I have been told by friends wife etc that at the diagnosis time I was pretty confused and f'd up.

If you can go to Urology/Consultants meetings together then I think that might be a good thing and details might not slip through the net. It is medical speak after all and maybe difficult as a patient to take in at the time.

Once again with Gleason 7 and age 55 he is a pretty good position - relatively.....

As Chris J alluded to in the original reply: Remember to look after yourself as well as your loved one.

 

User
Posted 19 Mar 2021 at 14:36

Hi everyone, really overwhelmed by all of the responses and it's really helping me to get my head round everything. I only hope my partner sees that there is help out there for him too.

colwickchris - thanks for posting your thoughts. My partner is dealing with things in a similar way to how you tackled it to begin with. At least you realised you needed your wife in the end! Early days for us so hopefully we will work through it and he will come round to involving me more. The trouble is with Covid, he can't take anyone to appointments anyway so he has a real excuse to go on his own. 

Barry - I appreciate your message, but at this point he would hit the roof if he knew I was even on this site, albeit anonymously. He's a very private person and doesn't want everyone to ask him how he is all the time. I'm already picking up a few things I hope to drip into conversations with him that he can ask his consultant about. Thank you.

Lyn - Yes, I agree it could be seen as controlling behaviour. I've got lots to think about and hope we can find a way through this, but if he can't or won't involve me it won't be possible. And yes, I probably was garbling about the hormone therapy. The surgeon said that if the operation couldn't be done within the next few months he would need to go on hormone therapy to control the cancer in the interim.

Dave - thank you for your message too! I will keep posting as it does feel better to hear other people's thoughts and feelings. My partner says she is just getting on with it - but he's getting on with it in his own man cave which isn't really dealing with anything! Only time will tell.

Take care, everyone x

 

User
Posted 19 Mar 2021 at 14:48

Originally Posted by: Online Community Member
at this point he would hit the roof if he knew I was even on this site, albeit anonymously

Ha! I used to hide away when on the forum or have two or three sites open at once so that I could quickly change screen if he came into the room. He hated that I was on here and didn't want to know anything at all. It only really changed for us after his treatment failed & the cancer came back; after that, I think he was glad that I was talking to other people about treatment options, side effects, etc.  

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

User
Posted 19 Mar 2021 at 14:58

Same! I'm working from home at the moment so can just open up the screen easier. It's really odd how a lot of men seem to be more reticent about medical treatments/visiting the doc's etc If it was me I'd want to find out all I could and speak to others to make the best choices. Men really are from Venus! I'm really sorry to hear the treatment failed for your partner and hope he is coping ok. It may be mine will come round once it's fully sunk in. I really believe he's convincing himself it's not happening. Deep breaths...

User
Posted 19 Mar 2021 at 17:31

Originally Posted by: Online Community Member

Barry - I appreciate your message, but at this point he would hit the roof if he knew I was even on this site, albeit anonymously. He's a very private person and doesn't want everyone to ask him how he is all the time. I'm already picking up a few things I hope to drip into conversations with him that he can ask his consultant about. Thank you.

I suspected this might be the case and you are right that there are quite a number of men who act in the way your husband has when faced with PCa.  Women are far more proactive when it comes to health matters and as we have found on this forum there have been a number of cases where the female has persuaded her partner to get checked for PCa in the first place and then researched the subject and in need follow up treatments for him.  I do not wish to ask you to say more than you want to volunteer but it seems from what you say that that there was less intamacy  for quite a time prior to your husbad's diagnosis which may or may not have added to the situation. It really is important that you come to an understanding, either just between the two of you or in need initially through a third party, ideally somebody experienced in this sort of situation.  My wife and I used 'Relate' many years ago when we sort of grew apart for a whileand this had nothing to do with PCa.  But sort it as soon as you reasonably can! 

Barry
User
Posted 19 Mar 2021 at 19:17

Hi MCD, it is no doubt blindingly obvious to you and everyone here that it would be so much better if your partner "came out" about cancer. We wouldn't all be here on this forum if we weren't inclined to be open about cancer. However there's only about 100 people active on this forum and 48,000 men a year are diagnosed with PC so I guess only about 0.2% of people want to "come out" on the subject.

Until I was fully diagnosed I only told a few very close friends there may be an issue. I would have been gutted if I had been found all clear and then felt that I had been "crying wolf". Once I was fully diagnosed, to the question "How are you today?" instead of saying "Fine" which is the only socially acceptable answer; I would say, "I have a slight problem, I have prostate cancer, I have told everyone I know, so feel free to discuss it with me or anyone else it ain't a secret. Other than that I'm fine". 

I would have hated people to look at me with pity, but I think my attitude of replying to sympathetic question like "I hope you're doing OK" (in a soft and concerned voice) with answers like "Well I am OK, but every time I go near a hospital, the doctors seem to just look around to see if there's another piece of medical equipment to shove up my a*se. I think they've got a bet on amongst themselves". I think that managed to show people they didn't need to treat me with kid gloves. Of course not everyone has my sort of personality.

Maybe your quote "A sense of humour is v important. Think we’ve got a while to go before finding it related to this subject." is a starting point. Are you treating him with kid gloves? I don't know what he is like, maybe you can start "having fun with cancer" if you can be relaxed about this disease maybe he will not try and protect you and open up. Now that you're seeing that there is a whole community of people who are getting on with their lives despite prostate cancer you can at least see that this is not the end of the world, he just needs to see the same. 

So lets hope that with a bit of nudging from you, dripping a few things in his ear, you can push him towards an open and fun future. You're the only person who knows him and can judge how to do this, but as you can see you already have a lot of friends on here to help.

(Little note for the Moderator I know you will be desperate to redact "a*se" in the sentence above and if you can get it to read as well and carry the same meaning feel free to, but please balance the risk of offending one or two people against the benefit of helping hundreds, if not thousands, or even millions 'gosh I have a big ego') 

Edited by member 20 Mar 2021 at 21:56  | Reason: Not specified

Dave

User
Posted 20 Mar 2021 at 01:20

I don't often come on here any more, having lost my husband last year but I just wanted to say that your husband is probably processing the news that he has cancer in his own way and it is normal to feel shut out.  I went to every appointment with my guy and we got  through it all as a team. He left it to me to find more out but it might be worth asking your husband if you could accompany him just in case he misses anything important that is said. It is easy to mishear or not ask questions. My husband was incredibly brave for almost ten years and we had periods between treatments when our life was normal. We talked and enjoyed our time together throughout those precious extra years but gradually the desire and ability to make love vanished ,  We maintained a close and loving relationship but we were older so perhaps it wasn't the most important thing to us to have sex.

People have mentioned your husband being controlling, but is he in other areas too? He may feel he has to protect you from it all and his way of facing it is with a laugh and to keep things normal.

Try to explain how it makes you feel. He may have a low sex drive anyway or may be hiding feelings of depression at reaching midlife or even issues at work. Some people do mask their true thoughts or others can only cope by treating it lightly.

I wish you all the best, whatever happens and remember many men live a long time with the right treatment. Life can be good again. We were still able to have a laugh, even in the last few months and enjoyed some great holidays that will live in my memories.

 

 

 

 

Edited by member 20 Mar 2021 at 01:25  | Reason: Not specified

User
Posted 20 Mar 2021 at 21:47

Hi Gillyflower, I think you’re right and he is still processing the news in his own way. We went for a walk today and he did start talking a bit more about things and what had actually happened at his appointment the other day. He did say some weeks ago that he refused to let this take over our lives and I guess his way of doing that is by not talking about it. Hopefully we will find a balance where we can share our feelings with each other, but not let it consume us and enjoy the good times that we will have all being well. 

Thank you for responding to my message. I am so sorry for the loss of your husband but I am glad to hear you had many happy times and have those memories. Such an awful thing for anyone to go through. I nursed my mum through two years of a brain tumour 7 years ago, which was devastating. I can only hope this process is easier on both my partner and me. Take care x

User
Posted 20 Mar 2021 at 23:36

Hi 

Hope you are communicating more.  Are you working as a team or not ? Gillyflower .. posts encapsulate this, otherwise why be in a relationship at all, eh ? Obviously everyone is unique and some folk  go through life single or having loose, open relationships with or without physical sex.  From your post, I'm unclear exactly what is the issue, it's nothing to do with a cancer diagnosis in my humble opinion from your timeline posted...  Are you able to say what the routine surgery was and the 'back storyline'..   Again Gillyflower mentioned this.. Is your partner under stress ? Work etc and  is quite  depressed or reaching burn out .?  Have you asked him when he last had an erection ?  Is his libido zero then ?

Surgery is the most destructive option re. ED ? Doyou both fully understand all the implications of surgery ?    I hope posing these questions and other replies help you form a structured strategy.

Do you have a trusted friend who can support you ? You are certainly not selfish in my opinion, it's about distilling what's important for you and makes you happy.     Take care..

Regards Gordon

Edited by member 20 Mar 2021 at 23:37  | Reason: Not specified

User
Posted 21 Mar 2021 at 16:09

Originally Posted by: Online Community Member
We had already not had sex for a year which I was worrying about and thinking it was me or the fact he was unhappy in the relationship, but everything else is good

Hi MCD2021,

Your situation is very hard.  I too had PC that, due to failed surgery and radiation bouts, put me on hormone therapy.  Yes, things can be hard intimately and sexually, however, it sounds like this issue began for your partner long before PC entered into the picture.  So, to me, the bigger issue is the fundamental disconnect he has with you around sex.  His PC condition is manageable, but his communication issues may not be. 

I wish you and your partner all the best, but if this doesn't change and you remain unhappy, you may have to take care of yourself by leaving him.

PS: my blog post is at https://community.prostatecanceruk.org/posts/t26825-The-rules-can-change if you want to know more about my story.

Edited by member 21 Mar 2021 at 16:13  | Reason: Not specified

User
Posted 21 Mar 2021 at 18:47
One thing you do need to be aware of is that if he does go on hormone therapy, the one side-effect of this that almost everyone has is a total and complete loss of desire for sex. It's not that things stop working, but the desire totally disappears. This won't be any reflection on you, so please don't take it as one - it's a side-effect of the hormonal changes the drugs make to a man's body, which are very similar to the menopause in a woman.

Best wishes,

Chris

User
Posted 21 Mar 2021 at 22:24
It is also possible that he has had ED for over a year and that is why he has been avoiding sex. ED can be an indicator of prostate cancer.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Mar 2021 at 22:52

Originally Posted by: Online Community Member
We went for a walk today and he did start talking a bit more about things and what had actually happened at his appointment the other day.

This sounds like progress, and something the two of you could do again. He's been forced somewhere he couldn't handle, and it's taking him time to get his head around it, but it sounds like he's starting to do so. I'm guessing he's struggling with his own emotions, never mind anyone else's (yours), and hence shutting down. However, you may be seeing the beginning of turning the corner.

It sounds like you have offers of help to talk with him (which I'm also very happy to do). It can be useful to talk with someone he doesn't know with no emotional baggage, but who's already been where he is now. It enables offloading and talking about fears and concerns without also worrying about upsetting someone he knows (such as you).

User
Posted 22 Mar 2021 at 11:46

It's heartbreaking for you, MCD, but you've kicked off a very good and valuable discussion.

It's amazing how much easier it is to talk while walking - getting out of the home environment and being side by side rather than having eye contact (or not) helps with the difficult stuff, doesn't it?  

I guess a counsellor would say that your man is grieving for himself, for his father and for your relationship as it was.  Not many people have been at their best these last twelve months, and he's processing it in his own way (possibly in the same kind of way his dad did, if he was anything like some men of that generation I've known). 

Everyone knows that a positive attitude is important to your health, and probably everyone appreciates that it's healthier to talk, but it's not so easy to do what he should if he is angry, frightened, worrying about something else or whatever.  It's unlikely he's going to move on much until he's had his treatment and (we very much hope) had positive news from the consultant afterwards.  One day he'll be glad that he is in the care of experts, rather than burying his head in the sand - and that you gave him so much support.  Tell him from us how lucky he was! 

I can tell you from experience that it's easy to tell the world good news and not want to share the bad.  Because of their own worse health, I haven't yet told my sisters about my cancer, a year on (or any friends).  I've now written to the sisters and said I'll call this week, and I'll mention it to friends when we can see them again (on a walk!)

So, thanks for getting me talking, and I / we wish you the very best of luck with the next stage and for the future.

KC

RP 07.03.20, PSA 4.1, Gleason 3+4=7 

User
Posted 23 Mar 2021 at 22:00

Just a quick addition to my post.   My late husband did start to have some Ed before diagnosis and Yes the hormone treatment stops any desire to make love but the love for each other can get stronger.

I am glad you are starting to talk to each other. We didn't tell anyone apart from our children for a long time. Even when he died some people said they didn't know he had been ill, because he always seemed so fit.

 

User
Posted 06 Apr 2021 at 14:40
Hi MCD

I don't come to this site very often (hence the late reply) but wanted to offer my best wishes to you both. Also, I wanted to offer a few perspectives on gettig the diagnosis and "processing" this. For me this has been intensely personal - my feelings a seem to be quite different to other men I have talked to (maybe because of my life history and how the PCa happened).

Firstly, the diagnosis was and wasn't a surprise - things like the "leaking" you mentioned, plus other things were being coped with by a really rather rubbish strategy of going "na na na ... I can't hear you body ... going to ignore you body". This and one of the the other things about me of trying to be "the strong one" in the relationship set me up for an awful lot of personal shame and guilt towards my partner. Add to this the poor prognosis from the first hospital visit, the undermining of self-image caused by the treatment, and that I'm not a person for admitting I need help and a downward mental spiral was going on.

Looking back it was pretty hellish as a time (at one point I was quite scared) but thanks to some specific help I came through it.

Maybe this has some similarities to your chap and maybe it doesn't. For example, for me it is easy to imagine the age gap would prey on my mind in his situation. Or maybe it's really different. Whatever the situation is inside him there maybe a few things that helped me that may be useful for you to know.

Another bit of information: when I did access mental health support I hid the fact from my wife: maybe that's a telling statement. I felt so bad in myself that I knew I needed help - but quite unable to tell my wife about what I was doing (but finally did so about six weeks later).

In those difficult days we did talk - sometimes good talks, sometimes less so. The first point is that what helped me most was knowing I was supported and that my partner was "there". She didn't need to being doing specific things - just being there and around and carrying on. I didn't need directive suggestions - things like "why don't you try / do this ..." are absolutely not the type of thing to get me talking (and talking has been a large part of getting cured). What helps much more is the type of interaction like - and this sounds a dreadful cliche - "how do you feel about that?". That allows me to express myself as much as I wish to at that time. So, that's the second point: using open rather than closed questions and comments and listening to the language one uses and what "works" at getting things discussed (there's a big difference for me between "what do you think is the best thing to do?" and "what do you feel is the best thing to do?").

I am afraid all the above is necessarily bloke-centered - and that it what I wanted to do, show that inside some men's heads (well mine) it can be difficult to for rubbish things to be processed and for feelings to get in and out.

Lastly, the above rather ignores what you are feeling and so on - on that score I hope you are getting the support you need and deserve also.

Once again, best wishes to you both.

User
Posted 06 Apr 2021 at 18:25

Hello MCD, I am 58, very active, fit and healthy, PSA 11 Gleason 3+3 T1. I have been on AS for 18 months. Today I had a second consultation with my surgeon. He is keen that I have RARP.  I have spent most of the afternoon on this forum. The decision about whether/when to have surgery is always there in the back of my mind.

Most of the time I do not think about my cancer. I have a partner and we openly discuss options and my feelings fairly regularly. As has been pointed out, men want to process this challenging diagnosis in different ways.  And all those ways are valid but I do think that talking about it is not only useful but necessary.  We men, those with PCa, are in the fire and at times, we need to stay in the flames in order to feel the heat! Positivity is a great tool but realism is about addressing the world that we live in and sometimes this world is uncomfortable or overly hot!

I imagine that your partner is not used to a talking therapeutic process? Encouraging someone to talk about feelings is difficult if they do not want to. There are some techniques:

  1. Ask Open-Ended Questions. 

  2. Pick Up on Nonverbal Cues -  it may be useful to point these cues out eg. "You look away from me when you talk about...."

  3. Don't Try to Read Their Mind -  ask if you do not understand or say "Tell me more about...."

  4. Conversations are a Two-Way Street - repeat or summarise  what the other person says when you start your response. 

  5. Set Aside Time to Talk. 

  6. Tell Them What You Need From Them.

Good luck

Tim

 

User
Posted 13 Jul 2021 at 11:05

Hello all. It’s been a rollercoaster of a few months but wanted to post an update, to see if anyone had any advice or experiences similar. My partner (55) has just had a radical prostatectomy with removal of lymph nodes, and he has just been told the cancer had spread into one of the nodes. He was told it was ‘very aggressive’ with Gleason score of 4+3. Unfortunately, had to wait for surgery due to Covid. He is now 19 days post-op and still suffering with severe continence issues, so feeling very low. Doing pelvic exercises but if anyone has tried one of the machines such as Innovo, please let me know. Next step is PSA test in a couple of weeks. I don’t know how much we can hope that it hasn’t spread further, but trying to stay positive. Unfortunately, as you all know, it’s just something we now have to live with and monitor. I was really hoping the surgery would have got it all out, but it was not to be. The only positive news is that he is definitely opening up more and is remarkably cheery, despite what is going on. He has even agreed for me to attend his next appointment with the consultant. I will be asking about next steps if PSA test comes back high, hormone therapy and chemo. Is there anything else I should ask or push for? Thanks everyone x

User
Posted 13 Jul 2021 at 13:43

MCD 

Too early to start worrying about the incontinence, he is still recovering inside from major surgery and being stitched back together. Take it easy but keep mobile, don't do anything to put a strain on that new joint or anything else.

RT with or without HT could be the next step, but that could be years away. I think something like 30 percent of us need follow up treatment after surgery. It was three years before I had salvage RT.

Stay positive and look after each other. 

Thanks Chris 

Added, personally I would not push the urine out.

 

 

 

 

Edited by member 13 Jul 2021 at 13:48  | Reason: Not specified

User
Posted 13 Jul 2021 at 13:55

Thanks Chris, yes I keep telling him it’s very early days so can’t expect things to snap back as quickly as he would like. And just to say he’s not pushing exactly but has definitely noticed his flow has got stronger since the op. We’ll take each day as it comes. Just a shock to hear the not so great news, but as always it could be a lot worse.

Take care

Edited by member 14 Jul 2021 at 07:52  | Reason: Not specified

User
Posted 14 Jul 2021 at 14:08

Originally Posted by: Online Community Member

Hello all. It’s been a rollercoaster of a few months  ... The only positive news is that he is definitely opening up more and is remarkably cheery, despite what is going on. He has even agreed for me to attend his next appointment with the consultant. 

I just want to honour you for your loving persistence in staying with him emotionally through the rollercoaster, and honour both of you for getting to the place where you can share some of the milestones like visiting the doctor together. Many men are brought up not to share such things, so it is a big deal to do this. 

My experience of my wife's support has been hugely helpful in my own transformation to be with my new normal.

User
Posted 14 Jul 2021 at 15:00

Thanks for your lovely message, Mish58. It means so much to be able to speak to people like you going through very similar things, and has provided a lot of comfort. I read your biog and I’m pleased to see things are going well for you despite a few setbacks. We’ll be getting on to pumps etc in time but first of all need to sort out the continence as he’s feeling pretty fed up with the constant dribbling. I think everyone has different recovery times and I’m sure it will feel a bit like one step forward, two step back for a while, but we’ll get through. It definitely is an adjustment to the ‘new normal’ whatever that ends up being.

Take care 

User
Posted 14 Jul 2021 at 15:21

Thank you so much! This support group was the first place I found in the world to get help when I was floundering after my surgery.

And on the different timescales - you are so right. One man I know, same age and fitness as me, healed his erectile dysfunction twice as fast as me, but had incontinence problems more than twice as long and severe as me. Each of us is different, and nobody else can know how hard it is emotionally to cope with whatever timescale is dished up to us.

 
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