It's not looking good is it?

Hello Quitit, I’m sorry to be late replying to your latest post. I’ve been thinking long and hard about what you have written and how best to reply in some way that might just help. I hope what I type helps you to feel less alone with your turbulent emotions and does not cause you any more distress.

You wrote 

But as a wife, i am fully struggling with the idea of the hormone treatment and the impact.  I feel guilty that i feel this way, and cant get my head around it.

How do i feel? its like i feel sick, violated and disgusted.  I have searched these feelings and some come up but i am thinking i am in new teritory here with "disgusted"

Who do i feel this towards?  the medical profession for giving hormone therapy at all, my husband for having it and what he might be with the treatment, myself for feeling li

I think there is some anger, even hate, in all of this - more for the cancer and the treatment than anything else. I have felt so angry - with the cancer, with the effects of the treatment, with what limitations we have had put on our lives, the worries about the future etc. it is all so very tiring and tiresome. 

I also hated the terminology ‘chemical castration’ that is used when discussing hormone treatment to treat prostate cancer. Yes, it is that - temporarily - but it sounds as if it is referring to our husbands as some sort of freaks. It’s really cruel to talk of the hormone treatment in these terms and I think it’s a cruel insult to their sense of masculinity. It’s not just their erectile function or their libido that makes them MEN - there’s so much more - not least how they act as GENTLMEN as best they can towards us.  I wonder if you are uneasy , perhaps subconsciously, by thinking your husband is no longer the MAN you married?  It really disturbed me when I first heard the term and I usually do not use it and certainly would never ever say it to my husband. It’s the unspoken terminology that hangs over us - along with the loss of physical intimacy ( I yearn for more than a quick kiss!). I can’t bring myself to speak it for fear of hurting him and I think he can’t bear to think of himself or acknowledge it that way. I feel so lonely some times, too,,,,,,

I have said all the way along that PC is a couple’s illness. It goes right to the very heart of our relationship with our partners. The cancer itself , the symptoms, the treatment and a sudden and unwanted uncertainty and loss of control of our lives and our future all provide a perfect storm for both partners. 

im really sorry if your marriage was rocky before the diagnosis and might not survive.  Nobody here on this forum can or should judge you. Only you and your husband really know what is or is not going right for you both.  We are celebrating our 50 th wedding anniversary soon. In that time we’ve had some really tough times that have sorely tested us. Looking back, I can see that it was fighting through and getting through the tough times gave us the experience to hope we could get through this cancer journey together. This battle is different, though. Other times it was something we knew we had a chance of getting through it together - even if our marriage might not have survived. This time there is the added fear that the cancer will kill him and I will be on my own at the end of it. This then makes my thoughts move on to face my own mortality…… that is scary too!

so, yes, we are having to confront so very much when our partners get this diagnosis. But it’s not as if they have done anything to put themselves at risk of getting  it such as alcohol abuse or smoking, as far as I can tell. It’s the (bad) luck of the draw, so to speak. It’s not their fault.

This  is an illness that just does not know when to stop taking away from us…But, we are humans and we might have our strengths we can talk about but, surely, we are being strong when we face up to and talk about our very human weaknesses, too? You were so brave to type out your thoughts and I hope that my own words might, in some small way, bring you some sort of comfort for you and others. We all struggle but at least here, in this forum, we can hopefully feel safe to express what we can’t say elsewhere. 

I hope you can find some peace x

Thanks for the responses, i absolutely appreciate your input, and it does give me things to think about.

I think I might have unpicked what it is that’s really the problem with our case.

We have been married a long time, we have grown up together.  I had a “full” life pre marriage, I really enjoy the company of men, but his was more conservative.

At the start I did not notice anything because life was full, kids work etc.  However over the years I noticed that our roles were not conventional.  I was the dominant partner, and we joked about how he would use me as a human shield in difficult situations, and he really did literally and figuratively.  I had to do everything, everything in the family.  I have no life outside the home, because he doesn’t like people.  If anything had happened to me, he simply would not have a clue what bank, what bills, who to order prescriptions from, even where to buy his underwear, he would just have a life full of himself. 

He has strong self confidence even though he is shorter and much leaner than I, if he means too or not.  He has to have branded products, whilst I have tescos own.  He has more personal care items than a woman, and spends hours showering, pampering, changing his clothes several times a day.  He has a very strong reaction to pain.  Having normal procedures will leave him off for a week, where as normal men would be up and at it immediately.  Conversely I have had some difficult medical conditions that other woman would struggle with and need to be looked after, but I had to carry on without stopping.  Intermittency was on his terms (again conservative), and I can not ever instigate it as he cant cope with that.  We don’t touch, or cuddle, nothing you would expect.  I spent the first 15 years of our marriage wating for him to realise there were two people in an intermate relationship.  Yep, he jumped on, jumped off and I was not part of the game.  It gone on too long, and you cant unpick whats happened.  I have not been kissed by a man for nearly 30 years, and no longer want it from him (the idea is just plain odd now).

About 5 years ago I essentially had a break down.  I said I was not the man in this relationship, that I needed him to take more responsibility and control.  That his responses towards me had fully undermined my confidence, I wasn’t even sure if I was even into men, and that simply isn’t true!  I am a woman and not a man.  It never really changed anything, we just accepted it.  He still uses me as a shield and honestly if we were robbed in the night he would hide and leave me to deal with it.  Hes done it all our life.

So after years of being nothing but his manager and occasional relief, him getting sick has essentially exasperated a very unconventional relationship.  Taking his masculinity from him because of his impending treatment is really just the last shred of it still in him at all, hes not a masculine man, never has been, indeed he is the absolute opposite.  I stayed with him all these years, have I facilitated his behaviours? no, I simply accepted them because I cared about the man he was inside.  And now I am a broken woman, no good for anything, and he is heading towards massive hormonal changes, treatments that will floor him longer than any, and his pride will (and is) absolutely broken leaving him more inclined to retreat into himself further than ever.   If it had me that got cancer, I would have had to carry on.

And there it is.  Cancer, its just made everything so much worse.    

Hello Quitit 223. I have read your story with a feeling of deep sympathy. I am not sure what the answer is unless perhaps you can persuade your husband to go with you to a Marriage counselling service like Relate. I would also add that I have stage 4 Prostate Prostate cancer. It has spread to my right lung and a nearby lymph note, and unfortunately despite being on hormone injections and a newer form of hormone treatment Enzalutamide tablets my PSA has started rise very slowly. Now my main thought in life is just to stay alive as long as I can with the help of a part plant base diet, exercise and meditation. I should add for the last 8 years since I was diagnosed with PC I have slept in a separate bedroom to my wife so I don't disturb her as I have to get up several times in the night to go to the toilet. I should also add I will be 81 in July this year.

If you have not done so already I would suggest you ring the Macmillan support line and follow the link to the emotional support section. They will also be able to give you information about a free counselling service with BUPA. However hard and difficult things are you are not alone.

It's sp hard caring for somone , I've been with my partner years I now feel I'm just a carer now , I'm so jealous of seeing couples hand in hand , going places , his mobility is bad now and I'm finding life a struggle,  I had counciling but it didn't work , I feel my health has deteriorated and I'm only 48 , sometimes I just want to walk away but don't know we're to start 

Hi Tina, I might have missed a previous post so don't know you partners circumstances. What I do know having cancer is not your partner's choice, can I as if you have been in touch with social services they might be able to get you help or respite from looking after your partner, Macmillan have a very good advice service.

But from my point of view our lady's are absolutely wonderful, I hope you're situation improves in the near future.

I am going to update, for a number of reasons.  Firstly I think its actually really important for others going through the whole process to see honest and raw real struggles of PC pre and post treatment, but also as a way of keeping those of you who have been so kind and responded to me in my absolute hour of need.

I have shared the process, the raw feelings I have experienced as the wife of the patient.  The most recent post showed my devastation and extreme emotional response to the condition and pending treatment.  The full-on emasculation of my husband, both because of the condition and because of my reaction.  I struggled with the “should I stay or should I go” battle and I wanted to tell you that it’s a “stay” situation which I think is epic.

How did we get to this.  Its really very simple.  The feelings of extreme rejection in our marriage because of the ongoing ED that had been a 3^rd party in our bed for 5+ years I felt less desirable, he felt devastated and neither of us could understand what each had done to suffer like this.  The more something is removed, the more you need it.  The impact of this is well documented and can cause marital issues in the best of relationships.  We however worked with it, and tried to cope, we did stay together and being committed to each other just kept trying.

Have I shared that this was an ongoing issue yet, no I didn’t it didn’t seem to be important.

Well turns out it was important, and incredibly relevant.  The feedback from the team was that my husband has had PC for 10 years at least.  Take a moment to think about that.  That means the ED for the last 5 years wasn’t him, or us, it was the PC.  We had been suffering because of the PC not because we were on the verge of collapse.

This changed everything.  The treatment, I struggled with because I though it would make a difficult situation a 100 times worse and it was the end of us.  Now we know its actually going to resolve this problem, we don’t know if he will be fixed after or not, but emotionally we have finally reached a point of resolution.  There is hope.  I know that his ED wasn’t anything to do with me, or us, it was his pesky cancer. 

Hi Quitit23

What an amazing, honest and very emotional post.

I can't say anything more but to wish you and your husband all the very best during your prostate journey and for the life you both deserve after.

Kind Regards - Brian. x

Hello Quitit, thank you for updating us. I think you’ve been on a big journey of reflection - both on your own and with your husband.  It is good to hear that you have come to a conclusion and I really wish you and your husband all the very best as you work your way through these stormy waters. I would like to repeat what I said in an earlier post, you have been tremendously brave and honest in your recent posts and I really hope that, by posting, you have found greater clarity in thinking about your situation and the support you so deserve in order to reach a big decision about your future.

I really hope that you and your husband get through this difficult patch and soon find yourselves sailing in less stormy waters

take care and good luck with everything x

Hi Quiti23,

I am so sorry to read your story, but I hope it's a good sign that you felt able to share it here. Wishing you and your husband al the best as you cope with PC

Angus

Hi all… I am not too sure what I was looking for when I joined this forum but reading all the above so much of the comments applies to my conscious and subconscious thoughts. I thank you so much for allowing me to realise I am not the only one mourning the intimate loss this rotten disease forces on both partners. Thank you I now feel normal and not just a cranky fish wife and will try with renewed efforts to keep the home fires burning bright.