Hi Sammi, good to hear from you. I was going to post earlier and ask for the diagnosis and treatment but others beat me to it. I know it sounds like splitting hairs but people with PCa make a distinction between terminal and incurable, terminal sadly means probably going to die within six months, incurable almost sounds like it means the same as terminal, but it doesn't, it means the cancer will never go away with current treatments but it can be managed and your husband may have years, possibly even a decade of life ahead of him. Those who are incurable and optimistic are hoping they may live long enough that a new treatment will come along before PCa gets them. I hope your husband is not terminal, but merely incurable.
I like your husband am on hormone therapy. Fortunately I will be off it soon, and if the radiotherapy worked I may be cured. For me HT has caused a loss of libido, and slightly less control of my emotions, I can find myself crying, particularly when I am being intimate with my partner and I remember what I'm missing. That would never have happened before HT. I can easily imagine that if this is happening your husband may try to avoid it, and remember he hasn't got the libido which normally drives any man to overcome any obstacles in the pursuit of sex.
You will find a lot of us on here are quite frank about our emotions, our treatment, our prognosis. I don't really like doing it because it makes me feel vulnerable, but the reason I do is that the more we share with the other people on here the more we can help each other. So please keep reading all the posts here, your husband may not want to share his feelings with you yet, but by reading the posts here you may be able to build your own picture of what's going on inside his head, your picture may not be right, but it will give you an insight and may help you break through to him.
If you like a post click on the person's avatar. Most of us put a bit of biography on our profile, you can then compare the person's treatment with that of your hubby.
I would say your husband may be withdrawn because he can not handle these new emotions. As other have said may be counselling will help. May be you will get enough of an insight from the posts on here that you will be able to help him.
When I was diagnosed my fiancée very wisely said let's start building good memories together. I hope you can overcome this first hurdle and start doing that.
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User
Hi
Prostate cancer can affect your relationship and I am sorry that your husband has it at such a comparitively young age. My oh was 63 and it came as a big shock as the symptoms were not that obvious. We are lucky in that we are now into the 10th year since the diagnosis. Different treatments have produced different side effects but the hormone treatment dampens all sexual feelings and fatigue can be a problem with many of the treatments. We had a few respite periods when things got back to normal for a while.
The important thing is to be as supportive and loving as you can, but do not expect too much if your oh is still trying to process his own feelings. Talk as much as you can and keep up with the things you enjoy most yourself.
If you feel he is very withdrawn and other behavioural changes concern you, have a chat with your GP or macmillan nurse. My oh plays games on his computer too and often it is just an escape from reality for a while.
Sometimes you have to be the one to plan outings etc and encourage him to try new things with you. Hugs and cuddles mean a lot and making sure you take walks together and try to take interest in the little things like birds in the garden etc. Excercise is important if he is low in mood.
With time, you adapt to the changes and if your love and friendship are strong you will find a way through all this. We cry more easily as it is a strain to keep going and being strong but never be afraid to admit how you feel and be understanding. I am happy to chat by private message if you do not want all to be public.
User
I was trying to help you see it for yourself. However, had momentarily forgotten about CV19, and the risk to you isolating with him.
I must say, I totally agree with Lyn. This behaviour can escalate too (I have been there). So please, DO NOT put yourself at further risk, make arrangements to move out ASAP. If you can’t go to your daughter. There are helplines set up for domestic violence UK wide. Please contact one.
Take care,
M
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User
It depends quite a bit on what treatment he has had or is still having. If he is on hormone treatment, this will have switched off his testosterone which is mostly what makes him feel like a man. If he isn't on hormones it sounds like he has depression or low mood - perhaps speak to his GP or the urology nurse (if one has been allocated)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
I suspect that you are experiencing a form of domestic abuse called coercive control. Being stuck in a house with him for the next 12 weeks is not in your best interests and with COVID, your daughter probably needs you more than he does right now. Is it possible that you could go and stay with her until the worst of the virus is over?
His bones can't have been hurting that much if he wouldn't see a nurse or doctor to get any pain relief. You are being played.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi Sammih
The aspect you have raised is best answered by wives (or partners) so I will not attempt to do so other than to start the ball rolling by saying that Prostate Cancer (PCa) is sometimes referred to as 'the couples disease' because it can affect both of them very significantly. You are by no means the first to raise this subject and express your feelings the way you have and no doubt will not be the last. There are previous threads which some may be able to link to or start afresh but you will find members of this forum supportive for men that are affected by PCa, and their families who can experience changes brought about by it.....................
Barry |
User
Hi,
Sorry I'm not who you asked for and hope that you don't mind me answering.
There are a few women who've written on here in a similar situation. Some will reply I'd think. I can perhaps find their messages but will see how it goes.
You might also be interested in what other men say if they feel the same as it might help. They might ask about his diagnosis as there might be encouragement. It's a bit late now but will look tomorrow. All, the best Peter
p.s. I just noticed Barry has replied and that your husband is 51. There are other men of that age on here and if it isn't too personal could you add his diagnosis and treatment unless you'd rather not. Thanks.
Edited by member 14 Feb 2020 at 23:36
| Reason: Not specified
User
My wife and I are 52 and nearly 5 years on from surgery. I know there is a ladies only Facebook page somewhere for wives of prostate cancer disease. I’ll try get the link for you or you may be able to find it.
User
Originally Posted by: Online Community MemberIt depends quite a bit on what treatment he has had or is still having. If he is on hormone treatment, this will have switched off his testosterone which is mostly what makes him feel like a man. If he isn't on hormones it sounds like he has depression or low mood - perhaps speak to his GP or the urology nurse (if one has been allocated)
Yes, this is key. It might help if you could say what his diagnosis and treatment is, so we can guess what side effects are likely to be hitting him.
He may be really concerned that he can't or might not be able to perform sexually, and besides making him depressed, he may have adapted a strategy to avoid putting himself in a position where there's any chance of intimacy. Counseling including sexual counseling if necessary should be available to the two of you via his hospital if he's still under them for treatment (contact would be his clinical nurse specialist) or via his GP. Really, he needs to initiate this and be willing to go through with it, but you might be able to get some initial help yourself via GP to try persuading him if he's not interested.
User
Sammih, this will seem a terrible thing to say but it might be a good idea to get independent confirmation of your husband's diagnosis and prognosis. It can be very frightening and lonely to be diagnosed with cancer and it is not unheard of for someone to mislead family or friends as to the seriousness of the situation. Even if that's not the case, being diagnosed is not necessarily a good reason for getting back together if you are not getting anything out if the relationship and your own needs are not being met.
If he goes to the hospital for his hormone injection, he must have an allocated nurse so you could maybe start with a call to him or her?
Edited by member 16 Feb 2020 at 21:50
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Sammih, I agree with Lyn: you need to find out more about the diagnosis and the treatment. From what you've said about not knowing if it's confined to the prostate or spread, it seems extremely unlikely that he's been given a terminal diagnosis (which means less than a year to live)! A diagnosis of advanced prostate cancer does NOT mean terminal - these days it's perfectly possible to live for 10 years or more with advanced prostate cancer, and new forms of treatment are extending life constantly.
The mental impact of a cancer diagnosis can be huge, and some people do get hit very hard by it. I'd urge him to seek counselling. Is there a branch of the Macmillan Cancer Charity at the hospital where he's being treated?
In my own case, being diagnosed with cancer made me realise just how precious life is, and gave me a determination to live it to the full.
Very best wishes,
Chris
User
Hi Sammih
Try to get support for yourself and a true picture of what he is facing. I found the nurses here v helpful now 4 months on from Surgery. My husband withdrew separately sleeping and dealing with each day as it happened.
User
I've seen something similar but less extreme a few times at local support groups. A wife has somehow managed to drag a very reluctant husband along for the first time. I remember one was so petrified he couldn't even talk when they came in and clearly wanted to be anywhere else. By the end of the evening, he was just about able to say a few things, which included a thank-you for everyone making him feel so welcome. He still couldn't talk about his condition, but having spent 90 mins in the presence of men with the same conditions, the barrier came down a bit.
However, I do share Lyn's concerns too. The panic attack could well be his way to terminate the consultation where you were present, so you didn't get to hear something he didn't want you to know about.
User
From what you tell us Sammih, his apparent head in the sand attitude is causing you great concern. Whilst being sensitive to his diagnosis and side effects of treatment, could you tell him how this is affecting you and say if he really cares for you it would make it easier for you if he would discuss his situation and feelings with you? The information you have given is quite vague due to his reticence and there is doubt about how long he may live. So within the constraints of the effects of his treatment, perhaps you could suggest that you make better use of the remaining time you have together and that he gives counselling a chance with you or by himself and perhaps sees his GP, as he may be suffering from depression where some medication might help.
Barry |
User
I’ll start with saying, obviously, I don’t know either you but if I had written your posts, and you were reading them...
Honestly, what would you be thinking? 😔x
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User
Does he have an assigned Oncologist who reviews his blood test results?
If not who is instructing his surgery to administer the HT?
Maybe worth accompanying him on his next visit. At our Oncology reviews my wife asks more questions than me.
User
Just a thought why don’t you look up the guidelines for Prostate cancer treatment to see for yourself if any of what he is telling you adds up? M
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User
Hi Sammih
The aspect you have raised is best answered by wives (or partners) so I will not attempt to do so other than to start the ball rolling by saying that Prostate Cancer (PCa) is sometimes referred to as 'the couples disease' because it can affect both of them very significantly. You are by no means the first to raise this subject and express your feelings the way you have and no doubt will not be the last. There are previous threads which some may be able to link to or start afresh but you will find members of this forum supportive for men that are affected by PCa, and their families who can experience changes brought about by it.....................
Barry |
User
Hi,
Sorry I'm not who you asked for and hope that you don't mind me answering.
There are a few women who've written on here in a similar situation. Some will reply I'd think. I can perhaps find their messages but will see how it goes.
You might also be interested in what other men say if they feel the same as it might help. They might ask about his diagnosis as there might be encouragement. It's a bit late now but will look tomorrow. All, the best Peter
p.s. I just noticed Barry has replied and that your husband is 51. There are other men of that age on here and if it isn't too personal could you add his diagnosis and treatment unless you'd rather not. Thanks.
Edited by member 14 Feb 2020 at 23:36
| Reason: Not specified
User
It depends quite a bit on what treatment he has had or is still having. If he is on hormone treatment, this will have switched off his testosterone which is mostly what makes him feel like a man. If he isn't on hormones it sounds like he has depression or low mood - perhaps speak to his GP or the urology nurse (if one has been allocated)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
My wife and I are 52 and nearly 5 years on from surgery. I know there is a ladies only Facebook page somewhere for wives of prostate cancer disease. I’ll try get the link for you or you may be able to find it.
User
Hi
Prostate cancer can affect your relationship and I am sorry that your husband has it at such a comparitively young age. My oh was 63 and it came as a big shock as the symptoms were not that obvious. We are lucky in that we are now into the 10th year since the diagnosis. Different treatments have produced different side effects but the hormone treatment dampens all sexual feelings and fatigue can be a problem with many of the treatments. We had a few respite periods when things got back to normal for a while.
The important thing is to be as supportive and loving as you can, but do not expect too much if your oh is still trying to process his own feelings. Talk as much as you can and keep up with the things you enjoy most yourself.
If you feel he is very withdrawn and other behavioural changes concern you, have a chat with your GP or macmillan nurse. My oh plays games on his computer too and often it is just an escape from reality for a while.
Sometimes you have to be the one to plan outings etc and encourage him to try new things with you. Hugs and cuddles mean a lot and making sure you take walks together and try to take interest in the little things like birds in the garden etc. Excercise is important if he is low in mood.
With time, you adapt to the changes and if your love and friendship are strong you will find a way through all this. We cry more easily as it is a strain to keep going and being strong but never be afraid to admit how you feel and be understanding. I am happy to chat by private message if you do not want all to be public.
User
Originally Posted by: Online Community MemberIt depends quite a bit on what treatment he has had or is still having. If he is on hormone treatment, this will have switched off his testosterone which is mostly what makes him feel like a man. If he isn't on hormones it sounds like he has depression or low mood - perhaps speak to his GP or the urology nurse (if one has been allocated)
Yes, this is key. It might help if you could say what his diagnosis and treatment is, so we can guess what side effects are likely to be hitting him.
He may be really concerned that he can't or might not be able to perform sexually, and besides making him depressed, he may have adapted a strategy to avoid putting himself in a position where there's any chance of intimacy. Counseling including sexual counseling if necessary should be available to the two of you via his hospital if he's still under them for treatment (contact would be his clinical nurse specialist) or via his GP. Really, he needs to initiate this and be willing to go through with it, but you might be able to get some initial help yourself via GP to try persuading him if he's not interested.
User
Thank you all for your comments it helps alot in understanding everything, my husband is having hormone treatment and it is terminal with him. I am perfectly ok with the fact that we can't be intimate anymore, i just feel that I've lost my husband completely and hate the thought that hes given up already . I really try to help him but he doesn't seem interested. I will try to get him to speak to a doctor about things. Hopefully things will get better. Thank you all again
User
Hi Sammi, good to hear from you. I was going to post earlier and ask for the diagnosis and treatment but others beat me to it. I know it sounds like splitting hairs but people with PCa make a distinction between terminal and incurable, terminal sadly means probably going to die within six months, incurable almost sounds like it means the same as terminal, but it doesn't, it means the cancer will never go away with current treatments but it can be managed and your husband may have years, possibly even a decade of life ahead of him. Those who are incurable and optimistic are hoping they may live long enough that a new treatment will come along before PCa gets them. I hope your husband is not terminal, but merely incurable.
I like your husband am on hormone therapy. Fortunately I will be off it soon, and if the radiotherapy worked I may be cured. For me HT has caused a loss of libido, and slightly less control of my emotions, I can find myself crying, particularly when I am being intimate with my partner and I remember what I'm missing. That would never have happened before HT. I can easily imagine that if this is happening your husband may try to avoid it, and remember he hasn't got the libido which normally drives any man to overcome any obstacles in the pursuit of sex.
You will find a lot of us on here are quite frank about our emotions, our treatment, our prognosis. I don't really like doing it because it makes me feel vulnerable, but the reason I do is that the more we share with the other people on here the more we can help each other. So please keep reading all the posts here, your husband may not want to share his feelings with you yet, but by reading the posts here you may be able to build your own picture of what's going on inside his head, your picture may not be right, but it will give you an insight and may help you break through to him.
If you like a post click on the person's avatar. Most of us put a bit of biography on our profile, you can then compare the person's treatment with that of your hubby.
I would say your husband may be withdrawn because he can not handle these new emotions. As other have said may be counselling will help. May be you will get enough of an insight from the posts on here that you will be able to help him.
When I was diagnosed my fiancée very wisely said let's start building good memories together. I hope you can overcome this first hurdle and start doing that.
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User
Dave, thank you so much for that, i say terminal because that is what he has told me. Its very difficult as when he was first diagnosed we had separated so i wasn't there at the beginning, but because he now refuses to go to the doctors unless its for his injection and refuses to go for check ups at the hospital because hes scared of what they will tell him we don't know if its spread or still contained to his prostate. Such a difficult situation! that's why I'm on here trying to get advice and understanding it all myself.
User
Sammih, this will seem a terrible thing to say but it might be a good idea to get independent confirmation of your husband's diagnosis and prognosis. It can be very frightening and lonely to be diagnosed with cancer and it is not unheard of for someone to mislead family or friends as to the seriousness of the situation. Even if that's not the case, being diagnosed is not necessarily a good reason for getting back together if you are not getting anything out if the relationship and your own needs are not being met.
If he goes to the hospital for his hormone injection, he must have an allocated nurse so you could maybe start with a call to him or her?
Edited by member 16 Feb 2020 at 21:50
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Sammih, I agree with Lyn: you need to find out more about the diagnosis and the treatment. From what you've said about not knowing if it's confined to the prostate or spread, it seems extremely unlikely that he's been given a terminal diagnosis (which means less than a year to live)! A diagnosis of advanced prostate cancer does NOT mean terminal - these days it's perfectly possible to live for 10 years or more with advanced prostate cancer, and new forms of treatment are extending life constantly.
The mental impact of a cancer diagnosis can be huge, and some people do get hit very hard by it. I'd urge him to seek counselling. Is there a branch of the Macmillan Cancer Charity at the hospital where he's being treated?
In my own case, being diagnosed with cancer made me realise just how precious life is, and gave me a determination to live it to the full.
Very best wishes,
Chris
User
Hi Sammih
Try to get support for yourself and a true picture of what he is facing. I found the nurses here v helpful now 4 months on from Surgery. My husband withdrew separately sleeping and dealing with each day as it happened.
User
He won't go to the hospital, he has his injections done by district nurses at our local health centre. I got him to go to the doctors once about a year ago and i started to ask the doctor questions but he had a panic attack and we had to leave, hes never been back since.when he complains about about symptoms that obviously men get from the injection I'm begging him to go to the doctor for advice but he refuses. I'm trying to do right by my husband and as a wife it is only right that i should be there to look after him as hes iĺl. I just feel so alone in it all as I'm not getting answers on what is going on which is why ive asked for help on here. I really appreciate all the advice you are all giving me and think you all are amazing
User
Something isn't right here. There is no way they would be giving him hormone treatment if he was refusing to have regular tests such as his PSA test - that would be done at the GP practice and then every so often he would have an oncology appointment at the hospital. If they couldn't measure his PSA they would have no idea whether the treatment was working and would be unlikely to waste NHS money on something that they can't see the effectiveness of.
I hate to say it but I think you may be being manipulated or misled. That or he has a very serious depression in which case you should consider speaking to or writing a note for his GP to express your concerns.
The PCUK nurses (number at the top of this page) are excellent and will talk it through with you in confidence.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
I've seen something similar but less extreme a few times at local support groups. A wife has somehow managed to drag a very reluctant husband along for the first time. I remember one was so petrified he couldn't even talk when they came in and clearly wanted to be anywhere else. By the end of the evening, he was just about able to say a few things, which included a thank-you for everyone making him feel so welcome. He still couldn't talk about his condition, but having spent 90 mins in the presence of men with the same conditions, the barrier came down a bit.
However, I do share Lyn's concerns too. The panic attack could well be his way to terminate the consultation where you were present, so you didn't get to hear something he didn't want you to know about.
User
I have been there when he has the injections, they have also told him that he can have a 6 monthly one, even though hes told me that hes probably only got about 2yrs left. I'm really sorry but I'm feeling a bit sick right now as other people i know have said that something isn't right about all of this, which is why i come on here to ask questions to all of you
User
From what you tell us Sammih, his apparent head in the sand attitude is causing you great concern. Whilst being sensitive to his diagnosis and side effects of treatment, could you tell him how this is affecting you and say if he really cares for you it would make it easier for you if he would discuss his situation and feelings with you? The information you have given is quite vague due to his reticence and there is doubt about how long he may live. So within the constraints of the effects of his treatment, perhaps you could suggest that you make better use of the remaining time you have together and that he gives counselling a chance with you or by himself and perhaps sees his GP, as he may be suffering from depression where some medication might help.
Barry |
User
Barry believe my I've tried everything to make the most of what time we have, every time i suggest that we do something he has a panic attack so it doesn't happen. I know I'm vague on everything but i can only give you all the information that I'm told by my husband. I would love some kind of life with him and make memories, sadly its not happening
User
Do you and your husband have children? If so I would assume they are past being teenagers in which case has he/she/they had any talks with your husband and could maybe influence him to be more co-operative for your sake and indeed for his own.
I understand that you can't force him to change but as a last ditch chance to shock him, could you say something like " I know your diagnosis and treatment is responsible for much of the way you feel and have changed and I want to support and help you so we can have some quality time together but if you are not prepared to co-operate in the slightest by seeking professional help and not involve me, I intend to go away for while so we can both consider if it would be better if we lived apart, as the present situation cannot go on because it is affecting my health". (Maybe you could stay with a relative or friend for a couple of weeks or just have a holiday? We don't know and are not asking about your personal circumstances.) This might have the desired effect or could lead to semi permanent or complete break up and that might be something you would not be prepared to risk). Prior to taking this course of action, I suggest you get professional counselling where you discuss all aspects of the situation and see what is suggested.
Hope things improve for you.
Barry |
User
So sorry in my very late reply, but i had alot going on. I have only been married to my husband for nearly 6 years so we don't have any children together. This is awful to say but his daughter doesn't want anything to do with him and my children don't believe that his cancer is advanced as he says as hes lied about to many things in the past about his health and life. He apparently got a part time job a few weeks ago but have since found out that that was a lie and my epileptic daughter had to come home to stay with me as she was so ill and the whole time he was saying that his bones were hurting, (which i know is a huge sign that the cancer has spread)but refused to see a doctor or gp to hospital because of this Corona virus but was laughing and joking with people on his ps4 game and now shes gone home hes not mentioned the pain once. I don't know what to think anymore 😢
User
I’ll start with saying, obviously, I don’t know either you but if I had written your posts, and you were reading them...
Honestly, what would you be thinking? 😔x
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User
I suspect that you are experiencing a form of domestic abuse called coercive control. Being stuck in a house with him for the next 12 weeks is not in your best interests and with COVID, your daughter probably needs you more than he does right now. Is it possible that you could go and stay with her until the worst of the virus is over?
His bones can't have been hurting that much if he wouldn't see a nurse or doctor to get any pain relief. You are being played.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
I was trying to help you see it for yourself. However, had momentarily forgotten about CV19, and the risk to you isolating with him.
I must say, I totally agree with Lyn. This behaviour can escalate too (I have been there). So please, DO NOT put yourself at further risk, make arrangements to move out ASAP. If you can’t go to your daughter. There are helplines set up for domestic violence UK wide. Please contact one.
Take care,
M
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User
Does he have an assigned Oncologist who reviews his blood test results?
If not who is instructing his surgery to administer the HT?
Maybe worth accompanying him on his next visit. At our Oncology reviews my wife asks more questions than me.
User
Ok i don't want to sound naive or stupid. The facts are that when we separated he was saying that he was having scans and biopsies nearly every week. I asked him to come back as i felt guilty for not looking after him. Since he's been back which has been just over 2yrs he has not had 1 hospital appointment or letter asking him to go. I have made him go for a doctor's appointment once last year but they said that they didn't have any of his information so couldn't tell us anything but when i mentioned that he had terminal cancer he had a panic attack and we had to leave the room. I know that he has injections because I've been there but i don't know who has authorized this as no one can tell me anything. I tried to call his bluff last night on him telling him that his bones were aching and said i was going to phone the doctors today and this morning he said that it was only because of his reflux that made him feel like that. Hes also not had a letter because of him being venerable about self isolating which i thought he would have as he has terminal cancer. Could he just be scared since coming back or am i just not wanting to believe that my husband is not telling me the whole truth
User
I think you are just not wanting to believe that someone you love could mislead you.
Too many bits of his story make no sense.
Aside from anything else, if he was terminally ill you would expect him to be under the care of his local hospice or palliative care team as well as seeing the oncologist regularly.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Out of interest, when he had the injection that you saw, where was it injected?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
He has McMillan if he needs them, that must mean something surely
User
User
Does he have a specific MacMillan Nurse? Anyone can ring them if they want to.
You wouldn’t tend to have scans & biopsies every week due to the time it takes to report on them. Also, as Lyn says it would be very unusual to have his level of diagnosis, and not have any form of frequent medical input.
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User
Again this is only what he was telling me when we lived apart. As for McMillan he has only said that they claimed his benefit for him 6 months ago
User
Just a thought why don’t you look up the guidelines for Prostate cancer treatment to see for yourself if any of what he is telling you adds up? M
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User
That's a good idea, thanks Mel