Metastatic Prostate Cancer with Hormone Therapy

For everyone, patients, families, friends, carers...share your methods for coping, your frustrations and seek support

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Dickie
Posts: 6
Joined: Tue Jun 21, 2011 12:56 pm

Metastatic Prostate Cancer with Hormone Therapy

Postby Dickie » Wed Oct 05, 2011 4:42 pm

Although I joined the forum in June, it's taken me all this time to find out how to post a new topic. So here goes.

My husband was diagnosed with prostate cancer a year ago - he's 56. He has hormone injections (Eligard) every 6 months and the cancer was metastatic (bones) when discovered, so there's no cure, only palliative treatment. I'd like to hear how other people - men & women - are dealing or have dealt with this particular situation. We have no idea how long the hormone treatment will keep the cancer at bay (neither do the doctors), although statistics usually say an average of 3 years and then it will be chemotherapy or similar. Apart from that, we are suffering as a couple, since hormone therapy is chemical castration, which means my husband's sex drive/libido is zero and this is permanent. There is no help through Viagra & Co because these only work if there is a "mechanical" problem - they require some kind of desire in the first place. The loss of a sex life would not be so tragic, if we managed some kind of closeness, tenderness. But that ability seems to have deserted us, too. If I try to hug him, he lets me, but there is no return and he never makes the first move. I feel rejected and we are both on edge all the time. Any ideas?

Dickie

pennycsf
Site Admin
Posts: 609
Joined: Sun Jan 24, 2010 7:19 pm

Re: Metastatic Prostate Cancer with Hormone Therapy

Postby pennycsf » Wed Oct 05, 2011 11:07 pm

Hello Dickie
I am glad you have found how to "post" - welcome to the CSF Forum!! I have copied your post into the "Coping and Support" forum as I think it may be read more there by those who can offer suggestions. In the meantime, if nothing else PLEASE use the Forum to let go of some of your frustration and distress caused by the difficult situation in which you and your husband find yourselves.

Penny

Dickie
Posts: 6
Joined: Tue Jun 21, 2011 12:56 pm

Re: Metastatic Prostate Cancer with Hormone Therapy

Postby Dickie » Thu Oct 06, 2011 2:24 pm

Hello Penny,

Thanks for relocating my post to where it belongs in "Coping and Support". I'm still familiarizing myself with the workings of the Forum and hope for some response, but - as you said - it's good just to let off some steam.

Dickie

goldenoldie
Posts: 193
Joined: Thu Feb 11, 2010 3:11 pm

Re: Metastatic Prostate Cancer with Hormone Therapy

Postby goldenoldie » Fri Oct 07, 2011 1:13 pm

Hi and welcome to the forum...I am no "trick cyclists" by any means...but I did once work with one so have a small inkling into things.
Two things spring to mind...(1)sounds silly, but do you really talk about your problem? I mean really in depth? because (2) your husband may not want to show any form of affection because subconsciously he is fearing that you may want to take things further than he does or can manage. He knows not only that YOU know his sex drive is low but also yours is unchanged therefore you might misread what he "offers" you. A caress or hug might get thought of as an indication of more than he is able to give. Find the right moment -sitting in the garden, out for a walk etc to actually give him "permission" to squeeze your hand or shoulder, caress your hair etc without letting him think you may anticipate more.
It is going to be hard for you both, but the more you can strengthen the bonds between you the easier it will be. When I Lived in the UK, I had a friend of fifty odd who was married to an eigthy year old and although things were grand to start with, naturally things ended up similar to you but they both accepted whatever the other was prepared to give.
good luck :)

Dickie
Posts: 6
Joined: Tue Jun 21, 2011 12:56 pm

Re: Metastatic Prostate Cancer with Hormone Therapy

Postby Dickie » Fri Oct 07, 2011 4:52 pm

Thank you for your thoughts. The hardest thing of all is not just the abrupt loss of our sex life, but the loss of intimacy and affection and all the knock-on effects. I understand that -subconsciously- he may wish to avoid even being affectionate and feel under pressure to "perform", but in reality we both know that's not possible. That's the difference between a temporary or low and a permanent no. We are trying hard to keep communication going, but the lack of physical - not sexual - contact - is driving us apart at the same time. One step forward, two steps back. With patience, kindness and perseverence, we hope to find some level of acceptance.

goldenoldie
Posts: 193
Joined: Thu Feb 11, 2010 3:11 pm

Re: Metastatic Prostate Cancer with Hormone Therapy

Postby goldenoldie » Sat Oct 08, 2011 10:25 am

I do understand what you mean about communication and this is going to sound a bit hard, but your husband is a grown man albeit trying to come to terms with his new inability but he must make the effort (even if he thinks its false) to offer you a look, a touch or something in "compensation" Having had very hard chemo last year and luckily being single now, I was glad there was no one else around to even ask if I wanted tea,coffee etc/was I all right etc etc. Its like a curtain comes down between you and the world, you just want the rest and "be".. But had I had someone here, I would have at least made the effort to smile a bit -joke a bit even.
Taking on the fight of this terrible desease with any sort of negativity and acceptance does not help anyone. Even when in a sterile room for a month with only nurses attending, I managed to find a smile or reply which lightened the load for everyone.
Have a word with his onchologist too the next time you go..yours is not the only time he will have dealt with the problem and there is always a solution if only you know it. In the mean time, keep your own spirits up as much as possible and you keep on hugging etc which will at least show him that you still enjoy his companionship if nothing else.

Dickie
Posts: 6
Joined: Tue Jun 21, 2011 12:56 pm

Re: Metastatic Prostate Cancer with Hormone Therapy

Postby Dickie » Thu Nov 17, 2011 7:46 pm

I've hesitated replying to what goldenoldie had to say about the effect of chemical castration, not only the man but on the couple, because I appreciate that everyone means well. However, making inappropriate comparisons to other peoples' situations (I didn't marry someone 30 yrs older than myself), just doesn't help. Suggesting we have to talk in depth shows me how little he or she understands. It's almost as bad as telling someone to pull themselves together. It just doesn't work. I have now found a forum for women called "his prostate cancer" which I would recommend. It was interesting to see that my CSF post under "coping" has had lots of viewings and zero replies. So I do appreciate that sometimes it's better to say nothing at all. Please don't take this as an attack or a devaluation of this forum, which does such a lot for loads of people. It's just not for me.

pennycsf
Site Admin
Posts: 609
Joined: Sun Jan 24, 2010 7:19 pm

Re: Metastatic Prostate Cancer with Hormone Therapy

Postby pennycsf » Thu Nov 17, 2011 9:21 pm

Hello Dickie
I am very pleased that you have been able to post your response to Goldenoldie. As you say, everyone on any forum is trying to add words of encouragement BUT people can only share their own experiences. It would have been a great loss to this forum if you had simply disappeared, your feelings and views are valuable.

I am particularly pleased that you have found a forum which gives you the support that you need in your unique situation AND that you have been able to share that with us. I will post the details of that forum in the Links section to ensure that others can benefit from it.

Despite what you say, I do hope that you can keep an eye on this forum too. We are a comparatively small community of anglophones living in France. As a result, we cannot hope to give any real help on specific cancers, however, we do have, between us, experience of living with cancer IN FRANCE and coping within the French system. It is sharing those experiences that, I believe, makes this forum valuable and why it was established. Anything which you and your husband can share which may ease the way for others in France is beyond price.

Good luck
Penny

Netschwester
Posts: 4
Joined: Fri Dec 30, 2011 12:56 pm

Re: Metastatic Prostate Cancer with Hormone Therapy

Postby Netschwester » Fri Dec 30, 2011 3:24 pm

Hello Dickie

I'm not sure if you are still checking out this forum, I only joined today as my husband has prostate cancer and so I was looking for people in the same boat. Believe me, I am in the same boat. We married only four years ago and my husband had had a prostate reduction six years previously, so we have had to cope with erectile disjunction from day one. It's very hard to share a life and a bed with someone who struggles with the attendant problems. If I had not encouraged him to see a doctor about it (the doctor arranged for a PSA test) we would not have found out about the cancer for some time yet.

I can't offer a solution, indeed, I don't know what to hope for myself. I do try to keep a positive view about his other attributes though, we all have more than one aspect don't we and I'm happy that he does not have to face this illness alone.

Kind regards

Netschwester

biggles
Posts: 107
Joined: Mon Jan 25, 2010 3:16 pm

Re: Metastatic Prostate Cancer with Hormone Therapy

Postby biggles » Sat Dec 31, 2011 12:38 pm

Hello Both
I am afraid that I can't offer any practical tips as this is not an area in which I have had any experience EXCEPT I do know a number of men with prostate cancer. They and their families/partners are living with the effects of the treatment which is far from easy. I can tell you that one man is frustrated and another "ashamed" that he can no longer perform and feels he is letting his partner down. As well as these immediate emotions, there is the perceived (I think) loss of masculinity.

As men (broad generalisation) are less inclined to talk about their feelings to others, there must be a huge build up of emotional pressure. I can well see that a partner would find it hard to find the right words or gestures. An impossible situation for both partners.

As Netschwester says, being there with your chap is possibly the best comfort that can be given.

All best wishes to you both and all others facing a similar situation,
Biggles


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