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Husband not coping well

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User
Posted 12 May 2023 at 03:05

Quick summary about my husband:  PSA 5.5 in Oct 2022, PSA 7.6 in Feb 2023.  MRI 2 lesions PIRADS 4 on one side, PIRADS 5 on the other.  Two month wait for fusion biopsy which was today.  Everyone tells us to prepare for a positive diagnosis based on the above.  But officially we are still in limbo. He is 60, I am 51.

So during this long two month wait, I have been researching the heck out of everything, trying to be the best support person I can be.  My husband has been in shock/denial and not done anything.  I have been treading very lightly -- he clearly does not want to talk about any of it (and in general he is a very private person.)

So today was the biopsy.  He did not want any information about what was to happen from me.  I ended up handling all of the preoperative paperwork and discharge instructions (general anesthesia.) 

After the biopsy he was a mess.  In pain, angry and hostile.  I was to check on him regularly but he locked himself in a room and would not allow it.   I tried to reach him but to no avail.  If he had punched me in the face it would have been less hostile.  You would have thought I took the samples myself!!!

So we aren't even to the diagnosis phase and it appears I have a real situation on my hands:  A husband who is simply unable to deal with all of the confrontations that are involved with the diagnosis and treatment of prostate cancer who as a result has made me the enemy.  I am terrified that when we actually get a diagnosis, he is just going to retreat further.  I cannot imagine how he will function when confronted with the incontinence and ED......  

Has anyone been in a similar position?  I just don't know how to navigate this.  I will do anything to support him, but if he flat out rejects any support, what can I do?

 

Edited by member 12 May 2023 at 14:54  | Reason: Not specified

User
Posted 15 May 2023 at 01:21

Thank you so much for the replies.  This is really helpful.  Especially Dave.  You have talked me from the ledge!

Being a partner in all of this is extraordinarily complex.  I am trying to be supportive and then find myself thinking "Am I being too motherly?" If I give him the kick in the ass that many people suggest (and believe me sometimes I want to), I ask "Am I being insensitive?"  Where does one draw the line between being supportive and accepting of the challenges facing their partner and allowing them to treat you like a punching bag?  How do I resolve the competing emotions:  One the one hand, sad, angry and frustrated at all the loss *I* am going through at  the same time that I feel enormous guilt about the fact that I am perfectly healthy, my husband is not, and I have no right to complain about anything.  None of it is not black and white.  It makes one's head spin.

I agree that this is the worst part.  The limbo has been torture.  I have done a pretty good job of keeping my research to myself and respecting that my husband needs to ignore it.  I needed a reminder that both ways of coping are just that -- coping -- and it doesn't really matter what either of us does right now (thank you dave!) 

Because this is such uncharted territory, I have no idea what to expect when we actually get a diagnosis, so right now I am probably over analyzing every response and generalizing from there (i.e. he was a total dick to me and shut down so this is what he is going to be like when we get the cancer diagnosis.)  I accept now that this is not necessarily the case and at any rate assuming that does me no good so I will just have to wait and see.

I am still terrified, but I guess I will have to live there.  These results cannot come soon enough.

Again thank you to everyone who replied.  This is a very lonely place and it is so helpful to hear other voices.

 

User
Posted 04 Jan 2024 at 17:52

Hi Nonny,

I would also say to go and get treatment for his depression / anxiety. When I started HT I suffered debilitating anxiety and just could not function at all. I was ‘persuaded’ to go to the doctor who prescribed me sertraline and it has helped me enormously getting through this ordeal. I know a lot of men with PCa who are on Sertraline, ok it’s an anti-depressant and nobody wants to be on this, but we have to go through so much with this disease and I decided it was either 3 years of hell(on HT) or 3 years of being able to cope….I chose the latter and thank goodness I did.

Derek

User
Posted 04 Jan 2024 at 18:10

Yes others have had problems. I can think of one forum member who was suicidal on HT he was only prescribed it for two years but stopped it after six months. I can not remember his profile so can't link to him. He is the only one I know who had very bad mental effects. Plenty have milder problems, often described as 'brain fog'.

Your husband stopping HT is not really an option. I have no idea if different HT may have different side effects, I suspect not, as I think the problem is lack of testosterone, and they all do that.

I have no medical qualifications but in my opinion: I think this needs treating as a mental health problem. I know he doesn't inherently have mental health issues, but he does now because of the HT.

Edited by member 05 Jan 2024 at 11:19  | Reason: Not specified

Dave

User
Posted 12 May 2023 at 06:36
He sounds like a right primadonna!

Seriously he needs to take responsibility for his own health and you need to stop mothering him.

User
Posted 12 May 2023 at 14:12

I've been on this site about three years, and I have seen about half a dozen threads start of almost identical to this. So you are not alone.

You may be under the impression, if it is this bad now it will get worse as you move on through the 'journey'. Fortunately you would be wrong in that assumption. The stage you and your OH are at now is the very worst place to be. Even a cancer diagnosis is better than the uncertainty of not knowing whether you have cancer, because most people will be assuming the worst.

There are two ways to handle this stage, research everything, or ignore everything. It doesn't matter which approach you take because it won't change anything.

If two halves of a couple take different approaches they may end up at loggerheads because the opposite approaches seem illogical to the other person.

So as it makes no difference which approach you take, I guess the casting vote has to go with the person who has the disease. Ofcourse this doesn't stop you doing the research and being prepared, but keep it to yourself, unless your OH asks.

In about a month's time I hope both of you will be in a better place, and any research you have done may move to the fore.

Dave

User
Posted 04 Jan 2024 at 16:52

Yes it should be, he has already tried Arbiterone but this failed fairly quickly after starting it and even then he was very short of breath which is a common side effect.    I wonder if anyone else has had similar problems with HT and anxiety/depression/paranoia????  My husband is only 60 and I believe the sudden drop in testosterone has had a dramatic effect on his mental state.

I have tried my best to be supportive but finding it difficult to cope myself with all that has happened.  I cannot forget and cannot forgive for somethings.

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User
Posted 12 May 2023 at 06:36
He sounds like a right primadonna!

Seriously he needs to take responsibility for his own health and you need to stop mothering him.

User
Posted 12 May 2023 at 07:48

I was not quite that bad ,I was not hostile or nasty. I did shut my wife out, It was my problem my illness , I was going to do it my way, I found it easier to talk to work mates or strangers than my wife.

We men do sometimes need a kick up the backside, but we are not in your shoes.

Hope you get it resolved. 

Thanks Chris 

 

User
Posted 12 May 2023 at 08:56
Sorry to say this, but as Chris commented, he does need a kick up the backside and to start taking responsibility. Does he have any close male friends who could give him a "talking to"? This is happening, and ignoring it won't make it go away. It's just not on to take it out of you!

Hope you can sort things out.

Chris

User
Posted 12 May 2023 at 10:17
He is frightened and embarrassed - I would back off and let him deal with all this in his own way. You mothering him is just allowing him to not engage - if he turns up for an appointment without doing the pre-work or form-filling, medical staff will deal with it and direct him.

My husband has dealt with this for nearly 15 years by staying mostly in complete denial and it has worked well for him but he has never been nasty to me and if he was, I would soon remind him of appropriate nd respectful behaviour

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

User
Posted 12 May 2023 at 11:47

A few thoughts I had when reading your post and relating to my own experience. You give very little information such as his age or where he went for treatment, so in many ways I'm just speculating. Maybe the time scale from first suspicion of pc to point of diagnosis has for him been very short, and he is still adjusting to the reality, and fearing the worst. In my case I had 6 year from first elevated psa to final biopsy diagnosis - I had time and space to adjust (and to go through the 5 phases of grieving - grieving for my lost invulnerability). My partner has been great, resisting her urge to push and press me make quick decisions, recommending treatment based on what's she has been told etc - when stressed she speeds up and I slow down. She was great and without confrontation was clear that I needed to take responsibility for what happens in the future.
You refer to fusion biopsy, was this private treatment?
My greatest concern, based on my own previous experiences, was of being treated as just another case and being given little or no choice on what treatment I have and having live with the long term side effects if incontinence or serious bowel problems. Well I now know there are many treatment options available and those side effects are by no means a given.
Our circumstances allowed my to have private fusion biopsy under GA, consultations following a +ve diagnosis of pc from the biopsy with a surgeon and an oncologist; both setting out the options available to me and both being very clear that the decision had to be mine. I've made my decision and I'm awaiting treatment - I've chosen to self fund treatment I cannot get on the NHS, which will mean giving up things in the future, maybe even borrowing against the house, but for me better that and owning my decision than feeling like I'm not in control of my own future.
As much as you can, help your husband to get himself to a position of accepting his situation and being well informed of the options so he can make an informed decision on what to do. The alternative is he acts as a victim, get what he gets and blames everyone else and everything else for his situation - not a nice place to be.
You found this site - maybe he can too?

Edited by member 12 May 2023 at 13:57  | Reason: spelling!! Change from 'diagnosis' to 'point of diagnosis' just for clarity.

User
Posted 12 May 2023 at 12:37
He hasn't been diagnosed yet Peter, he has just had his biopsy.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 May 2023 at 12:38
Oh dear, you are having a tough time. Having a supportive partner like yourself is so important in getting through this. I think all of us at some point near the beginning go through a stage of denial and not willing or able to talk about it. If his behaviour is out of character I guess you will need to give him some time to come to terms with it and take every opportunity to get on with life as normal as possible and be good to yourselves. It it’s NOT out of character sounds like he needs a good foot in the backside…but then again that might be dangerous for yourself.

Have you thought about calling the Specialist nurses on ProstateCancerUK….or maybe pop into your local Maggies Centre who are very good listeners and can give you advice.

From my own personal experience the sooner you open up about this awful disease and learn to talk about it, the better for all.

All the best for both of you.

Derek

User
Posted 12 May 2023 at 13:31

Sorry to hear this, and difficult to think what to do.

The PCUK nurses are well used to dealing with emotional issues and may have some good advice.

He needs to calm down, and clearly the prostate issue is winding him up, so I would not bother talking about it or treatments or anything related for now. It's likely to be 3 or more weeks before you hear anything about the biopsy anyway. With you having done all the prep work, he may be thinking you put him through this (which obviously isn't the case), but the mind works in strange ways when stressed and confused.

When he's calmed a bit and hearing you rather than shutting you out, let him know you're there for him, and sad/worried/upset that he's so upset, and you love him and need him. Also recognise there may well be things he can't talk with you about - this is very common. Thoughts going around in his head are likely to be is he going to be alive in a few months, is he going to lose his manhood, and all the other things all of us worried about during diagnosis. He might be able to talk with a best male friend, but often it's easier to talk with someone you don't know. If you have a local support group, there may be someone he can call and chat with. There's also the Tackle Helpline 0800 035 5302 which is manned by patients.

I don't think kicking him up the backside just now would achieve anything.

Edited by member 12 May 2023 at 13:32  | Reason: Not specified

User
Posted 12 May 2023 at 14:12

I've been on this site about three years, and I have seen about half a dozen threads start of almost identical to this. So you are not alone.

You may be under the impression, if it is this bad now it will get worse as you move on through the 'journey'. Fortunately you would be wrong in that assumption. The stage you and your OH are at now is the very worst place to be. Even a cancer diagnosis is better than the uncertainty of not knowing whether you have cancer, because most people will be assuming the worst.

There are two ways to handle this stage, research everything, or ignore everything. It doesn't matter which approach you take because it won't change anything.

If two halves of a couple take different approaches they may end up at loggerheads because the opposite approaches seem illogical to the other person.

So as it makes no difference which approach you take, I guess the casting vote has to go with the person who has the disease. Ofcourse this doesn't stop you doing the research and being prepared, but keep it to yourself, unless your OH asks.

In about a month's time I hope both of you will be in a better place, and any research you have done may move to the fore.

Dave

User
Posted 15 May 2023 at 01:21

Thank you so much for the replies.  This is really helpful.  Especially Dave.  You have talked me from the ledge!

Being a partner in all of this is extraordinarily complex.  I am trying to be supportive and then find myself thinking "Am I being too motherly?" If I give him the kick in the ass that many people suggest (and believe me sometimes I want to), I ask "Am I being insensitive?"  Where does one draw the line between being supportive and accepting of the challenges facing their partner and allowing them to treat you like a punching bag?  How do I resolve the competing emotions:  One the one hand, sad, angry and frustrated at all the loss *I* am going through at  the same time that I feel enormous guilt about the fact that I am perfectly healthy, my husband is not, and I have no right to complain about anything.  None of it is not black and white.  It makes one's head spin.

I agree that this is the worst part.  The limbo has been torture.  I have done a pretty good job of keeping my research to myself and respecting that my husband needs to ignore it.  I needed a reminder that both ways of coping are just that -- coping -- and it doesn't really matter what either of us does right now (thank you dave!) 

Because this is such uncharted territory, I have no idea what to expect when we actually get a diagnosis, so right now I am probably over analyzing every response and generalizing from there (i.e. he was a total dick to me and shut down so this is what he is going to be like when we get the cancer diagnosis.)  I accept now that this is not necessarily the case and at any rate assuming that does me no good so I will just have to wait and see.

I am still terrified, but I guess I will have to live there.  These results cannot come soon enough.

Again thank you to everyone who replied.  This is a very lonely place and it is so helpful to hear other voices.

 

User
Posted 03 Jan 2024 at 14:40

Sorry to hear he has pushed you away, unfortunately I found the both the same and completely opposite.  When my husband started HT he suffered with depression and stopped everything he enjoyed and isolated himself completely.    His only concentration was on me and this turned into a living nightmare and complete suffocation.   I honestly do not understand how some people treasure the world and people around them and take everyday as a blessing and then others destroy anything they touch.  A year later we are still have problems and not out of the woods, his cancer is controlled but I question whether the emotional rollercoaster this has placed on the family and our relationship has been worth it.   The treatment to date has been very close to ending our marriage and has pushed us to our limits.  I think people need to appreciate that the physical side to all of this is just one tiny part with the emotional ride a even bigger one.    

I fear we have a long way to go ..........

User
Posted 03 Jan 2024 at 15:10

Sorry to hear this Nonny. How long is the HT for, is it life? He probably needs to look into treatment for his depression. Couples supporting each other is important, but each half doing the best to ease the burden on the other is equally important.

Dave

User
Posted 04 Jan 2024 at 16:52

Yes it should be, he has already tried Arbiterone but this failed fairly quickly after starting it and even then he was very short of breath which is a common side effect.    I wonder if anyone else has had similar problems with HT and anxiety/depression/paranoia????  My husband is only 60 and I believe the sudden drop in testosterone has had a dramatic effect on his mental state.

I have tried my best to be supportive but finding it difficult to cope myself with all that has happened.  I cannot forget and cannot forgive for somethings.

User
Posted 04 Jan 2024 at 17:52

Hi Nonny,

I would also say to go and get treatment for his depression / anxiety. When I started HT I suffered debilitating anxiety and just could not function at all. I was ‘persuaded’ to go to the doctor who prescribed me sertraline and it has helped me enormously getting through this ordeal. I know a lot of men with PCa who are on Sertraline, ok it’s an anti-depressant and nobody wants to be on this, but we have to go through so much with this disease and I decided it was either 3 years of hell(on HT) or 3 years of being able to cope….I chose the latter and thank goodness I did.

Derek

User
Posted 04 Jan 2024 at 18:10

Yes others have had problems. I can think of one forum member who was suicidal on HT he was only prescribed it for two years but stopped it after six months. I can not remember his profile so can't link to him. He is the only one I know who had very bad mental effects. Plenty have milder problems, often described as 'brain fog'.

Your husband stopping HT is not really an option. I have no idea if different HT may have different side effects, I suspect not, as I think the problem is lack of testosterone, and they all do that.

I have no medical qualifications but in my opinion: I think this needs treating as a mental health problem. I know he doesn't inherently have mental health issues, but he does now because of the HT.

Edited by member 05 Jan 2024 at 11:19  | Reason: Not specified

Dave

User
Posted 05 Jan 2024 at 08:36

Thanks both, he was prescribed the Sertraline but to be honest this made things much worse.   It all seems to be down to the individual as to what level of response you get to no testosterone.     I remember the main thing his Consultant said at the very beginning of all this was you can take HT as long as you can tolerate it.  We have been to some very dark places over the last year!  We are awaiting blood test results so fingers crossed for a positive result.

User
Posted 05 Jan 2024 at 09:01

Hi Tortuga,

It would be good to share our experiences as we are nearly the same age and in a similar situation, would you be happy to DM me if anyone knows how to do this???

Nonny

User
Posted 05 Jan 2024 at 09:15

Tortuga, my heart goes out to you. It is an incredible lonely place. So many thoughts and emotions. It’s a real rollercoaster. Without this forum I think my head would have fallen off at times. We’re in the same age bracket. Dave’s advice is good. I suppose I feel “fortunate” in that my hubby has been positive and open and we’ve discussed things together. However, we did have a huge blip a year ago, where I think it all of a sudden hit him like a steam train. I couldn’t help any more. He had made a great recovery after surgery but he sort of didn’t quite process it all. He referred to his abdominal surgery, rather than prostate cancer. Long story short, he did have some 3 counselling sessions, as he was in a black hole. He’s shared bits of info with me but mostly kept things private. It really helped him. I did give him a gentle kick up the backside too. The waiting for test results is just the worst. The anxiety is awful. I did very much like you, researched, read and drip fed. Mike wanted to know the bare facts to get him through whilst I needed to know the whole picture. I hope things settle down and you can start to lean on eachother. X

Edited by member 05 Jan 2024 at 09:15  | Reason: Not specified

User
Posted 05 Jan 2024 at 13:44

Originally Posted by: Online Community Member

Thanks both, he was prescribed the Sertraline but to be honest this made things much worse.   It all seems to be down to the individual as to what level of response you get to no testosterone.     I remember the main thing his Consultant said at the very beginning of all this was you can take HT as long as you can tolerate it.  We have been to some very dark places over the last year!  We are awaiting blood test results so fingers crossed for a positive result.

Oh dear I’m sorry to hear this. I’m wondering what dose he got, I’m on 50mg which seems to work perfectly for me. It did take about 6 weeks for it to work for me but I assume he gave it that length of time?
I have to say without this I just do not know HOW I would have coped…I was in a very bad place, not suicidal but who knows where I would have ended up.
I’m also just sorry I was stubborn and didn’t join Maggies as soon as I was diagnosed as I think this would also have helped with my anxiety. I’m always banging on about the benefit of having a support group such as Maggies, and I know not all may be as good as mine,  but I’ve seen so many men come along to the meetings like rabbits in headlights and s*** scared, and with the support of the other members are able to come to terms with this awful disease.

I wish you and your OH all the best and hope that the blood test results are good.

Derek

 
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