Feeling shut out

Feeling shut out

User

Posted 26 Jan 2019 at 00:42

Hello, I’m new here. My long term partner of 30 years has recently discovered from the pathology report after a radical prostatectomy that there is a positive margin to one of the biopsies. The cancer cells in this biopsy are small cell neuro endocrine type and are a different cancer to that in his prostate. They are rare aggressive types which the consultant says are difficult to treat due to lack of data as to what works. My partner has been offered chemo but has elected to wait a little while to 'see what happens'. That's the factual bit- but what i'm struggling with is the emotional bit! My partner has become so distant and closed off. He doesn't talk to me about his feelings (or mine), he's sharp and snappy and where I thought we would be able to cope by being in this horrible journey together, i now feel so alone. Anyone else experienced this or got any advice? I know it's early days and he has been through a lot after getting a bad infection shortly after his initial op and he is coming to terms with the enormity of it all, but he is just suddenly so cold to me and shut off.

User

Posted 26 Jan 2019 at 00:42

User

Posted 27 Jan 2019 at 09:47

Sometimes we men need a good kick up the backside, I told my wife I had a raised PSA then shut her out, it was my body, my problem and was going to sought it out my way. I spoke to guys at work and total strangers but did not have discussions with my wife, I attended the scans and appointments on my own. The first time my wife was actively involved was taking me to the hospital for the op where she also met my surgeon/ consultant for the first time. In hindsight it was a very selfish thing to do. Following the op she has been a brick. We all deal with things in different ways and I still disappear inside my self on difficult days, but she is always there for me.

Thanks Chris

User

Posted 28 Jan 2019 at 16:31

Your husband is processing a lot of loss (current and potential) and may be struggling with that.

He may also not want to burden you with his fears. Some men internalise their worries and tend towards shutting down direct communication and may try and deal with their fears through other means (drink etc.).

He may just need you to be there whilst he gets his head round it so as hard as it may be, unconditional support may be the best thing you can do.

You cannot go on like that forever so there may come a time when you do need to kindly kick him up the bum and get him to talk, even if just to a counsellor or somefrom PCUK. If it remains problematic, see if you can get him to the GP to discuss medication and make sure you notify his medical team he is struggling if he does not do so himself as they may be able to help too.

It is also very important that YOU have someone to talk to, be that a friend, a relative, a counsellor, someone from PCUK or whatever works for you.

Remember we are here for you and him.

User

Posted 28 Jan 2019 at 17:37

I am sorry that you are going through this feeling. I am sure that your oh will be trying to process his feelings himself before he can open up and start talking again. I do not know enough about the different forms of cancer cells to comment but if you can, for the moment, let him deal with the news in his way. Be there and keep up with the little things that matter like the hug as you pass him or a smile or a touch as needed. If you can, tell him you feel shut out, and ask him what he would like you to do to help him through this.

Keep an eye on him to ensure he doesn't become depressed and try to think of things you can do together which give you pleasure.

We have found after 8:years of hospital visits etc that it helps us both to attend clinics etc and to face things as a team as we always have done.

Give him space and keep loving him. He isn't rejecting you but is trying to work it all out himself in his own way.

User

Posted 29 Jan 2019 at 12:56

Thank you Ann for your kind words. Much appreciated.

User

Posted 29 Jan 2019 at 13:12

Thank you Devon maid. There’s a Maggie’s Centre attached to the hospital and i am going to pop in when I’m next there. I’ve followed quite a few of your threads and have found them very helpful. Thank you again.

User

Posted 29 Jan 2019 at 13:22

Johsan, this brought me to tears - good tears. I am holding so much in at the moment, trying not to let my negative feelings affect my partner. I don’t know why i hadn’t thought of writing beforehand. i’ve written in the past when i’ve been really angry and couldn’t manage to express it calmly, so why not write about my overwhelming sense of sadness and loss of our future together?

User

Posted 29 Jan 2019 at 13:28

Chris J, I know you’re right and i too would hate to end up a bickering pair ...more likely a silent pair at the moment! All the comments here have been so supportive and helpful, and I am not prepared to let this bloody cancer take everything from us!

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User

Posted 26 Jan 2019 at 19:08

Hi Jackie. Sorry to hear of this. I don't have any experience of small cell cancer although I do know it is more difficult to deal with. I've responded to your post to hopefully bump you up so that those with more knowledge can give you advice.

My husband thankfully hasn't shut himself off following his diagnosis. That must be really difficult for you (and him. )How long ago was he diagnosed? How long is he considering postponing treatment? Maybe he is still in a state of shock and needs a little bit more time to come to terms with his situation.

Is it possible to sit down with him and tell him exactly how you feel? Maybe he doesn't realise or it's a coping strategy for him. If he doesn't want to speak about it at the moment at least you can tell him you love him and that you will be there for him when he does want to speak about it. You will need to be there for each other .

In the meantime look after yourself and find family members or friends you can confide in.

Hope others come along soon and give you words of wisdom and support.

Best Wishes

Ann

Edited by member 26 Jan 2019 at 19:12 | Reason: Not specified

User

Posted 26 Jan 2019 at 19:14

Hi Jacie,

It doesn't seem so long ago another lady posted about her husband becoming withdrawn. I had a look for it but can't find it and I'm not knowledgeable about it.

As you say it is early and if you expect a good outcome and have a setback it takes a while to level out. You can go into anger, depression, acceptance. I don't know if you have a Macmillan contact or you could try a ProstateCancerUK nurse to get some guidance. It could be he needs time or perhaps someone else to talk to about his condition. I notice someone else has replied now. Best Regards Peter

Edited by member 26 Jan 2019 at 19:16 | Reason: Not specified

User

Posted 27 Jan 2019 at 01:28

Good morning Jacie,

It may not help you now, but please try ti understands that his reaction is not uncommon. Many years ago, I was the same. Seen many others react the same way over the years.

Firstly - if you can, try to come to terms with the probability that it is possibly not against you.

If you can depersonalise this situation, take the YOU out of the equation, it may be easier for you to offer support and "be there"?

Two things to consider?

1. There may be a need for a conversation.

2. But there needs to be the right time for that conversation

About:

a. What it is that he is dealing with, the facts.

b. How he feels about that?

c. What you can and will offer?

d. What you can not do?

Is he talking to anyone about the issues you are both facing?

Can you talk to any about the issues so that you can be there when and if required?

Talking about and around stuff resolves most issues, eventually.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 27 Jan 2019 at 09:47

Thanks Chris

User

Posted 27 Jan 2019 at 10:05

Some really good replies here from men who have been through that. If i were you I’d contact my local hospice and tell them what's happened, I’m sure that they would offer you some support with this. I did exactly this when mu husband was diagnosed and they have supported me since. They support us both now of course, but at the beginning i needed support for my feelings and what a help that was and is. Maggies centres are also great too and you can always ring the prostate cancer support line specialist nurses who will also understand and give you support as we will too.

i hope things improve for you

love Devonmaid xxx

User

Posted 28 Jan 2019 at 09:59

Jacie, for some men it is difficult to put into words just how they feel.

Any cancer is difficult to come to terms with but for a man with prostate cancer it can seem the end of their world. At the moment it is all about him.

He may be struggling with your sadness and what the future holds for you as well as both of you as a couple. Perhaps he feels that raising the issue will open the floodgates as to how you feel about your future with him and he is frightened to put it to the test.

Only you know how you feel, we can only empathise and tell you of our experiences.

Feeling shut out can only make things worse for you because it isn't a situation where it will all blow over, like a normal row would.

I am a great believer in communication where prostate cancer is concerned because so much that is left unsaid can be misconstrued.

Since your partner doesn't want to sit and talk to you about it, how about you write a letter and leave it where he can see it and read it in private (so that he doesn't have to watch you watching his reaction).
Pour out your heart to your man, tell him you are grieving too but that you want to be a part of his life now and in the future, and tell him how it feels to be shut out.

I hope you can work it out. Supporting each other will help both of you

Edited by member 28 Jan 2019 at 10:01 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 28 Jan 2019 at 16:00

PCa killed my happy marriage of 34 years. The reason was, over time, a failire to communicate and share the journey whereas in the early yeas' we did and shared everything together. Communication is key to cracking open the complex mind of the newly diagnosed and terrified male. Dont forget, he’s not just terrified of his own situation but of his life ending early, his impact on you, your life, your emotional bond. Give him space but do communicate. Good luck

User

Posted 28 Jan 2019 at 16:30

As above you MUST sit down face to face and open up. The only chance of getting through this all is to hold hands and talk and maintain whatever level of closeness you can. In many ways it strengthened our marriage albeit it was filled with a sadness. I’m not at Bazza’s stage and haven’t been through the horrors of HT or Chemo yet , but if it does happen I know we need to stay strong. I had a bone scan the other day and there was a guy there pretty much end stage PCa with his wife. They just bickered and fought and were generally very unpleasant to each other. No way do I want to end up like that. I hope you can try and that he will try too x

User

Posted 28 Jan 2019 at 16:31

Your husband is processing a lot of loss (current and potential) and may be struggling with that.

He may just need you to be there whilst he gets his head round it so as hard as it may be, unconditional support may be the best thing you can do.

It is also very important that YOU have someone to talk to, be that a friend, a relative, a counsellor, someone from PCUK or whatever works for you.

Remember we are here for you and him.

User

Posted 28 Jan 2019 at 17:37

Keep an eye on him to ensure he doesn't become depressed and try to think of things you can do together which give you pleasure.

We have found after 8:years of hospital visits etc that it helps us both to attend clinics etc and to face things as a team as we always have done.

Give him space and keep loving him. He isn't rejecting you but is trying to work it all out himself in his own way.

User

Posted 29 Jan 2019 at 12:56

Thank you Ann for your kind words. Much appreciated.

User

Posted 29 Jan 2019 at 12:58

Thank you Peter. Helpful words here. I will follow up with MacMillan i think and see about some counselling.

User

Posted 29 Jan 2019 at 13:04

Dave, thank you! It really helped to hear this from a male perspective of someone who has felt the same. I think you are right - I need to reframe this and step outside my personal feelings. I will use your talking points... when the time is right.

User

Posted 29 Jan 2019 at 13:09

Thanks Chris for such an honest reply. It helps me to hear this. It is quite similar to me and my partner, although i did get to go to appointments wíth him. When he was first told the news that it was a fast growing, aggressive type I burst into tears. His reaction was, ”why are you crying?”!

User

Posted 29 Jan 2019 at 13:12

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Posted 29 Jan 2019 at 13:22

User

Posted 29 Jan 2019 at 13:24

Bazza, thanks for replying. This is EXACTLY what i don’t want to happen to my relatioship. I will fight to keep communication open as i do know how important it is.

User

Posted 29 Jan 2019 at 13:28

User

Posted 29 Jan 2019 at 13:32

A big thank you Prostate Pete for taking the time to reply. Your comments are really helpful. I will try to do ’unconditional’ for a while, but you’re right that there will come a time when more might be needed.

User

Posted 15 Feb 2019 at 20:27

Hi Jacie, I hope that by now you have managed to sort things out.

I went through this for a few weeks when my partner went down the rabbit hole and didn't want to talk about anything to do with his cancer. He was sarcastic, snappy, belittling and cold towards me which is so unlike him. I found myself walking on eggshells... awful times.

Eventually I sat him down and told him just how awful he was being. "I know you have cancer and I know you are scared but that doesn't give you a license to be so mean to me" I told him. I explained to him that we had both been given this diagnosis and that for me, the fear of loss was just as crippling as his fear of death. I told him that all I wanted to do was support him through this but I couldn't do that when he was using me as his battering ram.

Things changed after that. Occasionally he still goes off on one but quickly apologizes and comes over and hugs me. Thank goodness we are back to being a team because if he'd carried on like he had, I dread to think what would eventually happened to our relationship. The one thing it did give me was an alternative insight as to why relationships going through this can break down.

Edited by member 15 Feb 2019 at 20:30 | Reason: Not specified

User

Posted 15 Feb 2019 at 20:39

Epic post Maria. The only thing that has got El and I through this is total honesty and teamwork and love and support. Yes we’ve been right through the mill and some nasty stuff said also ( mainly by me ) , but communication and true love and our teamwork had shone through. I have had much mail from men and women whose relationship has been basically terminated by this disease, and in every case it boils down to communication and openness and a new normal.

User

Posted 16 Feb 2019 at 19:04

Well I'm glad you both got through the rough stuff and kept that team spirit going Chris.

I think there is so much fear going on from both sides and when we are fearful, we can come across as snappy and irrational. Like you say, a cancer diagnosis can really test a relationship but if you keep working at it, you come out of the other side stronger for it.

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