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Relationships

User
Posted 22 Apr 2019 at 12:30

 

 We are older and have been together over 20 years ( second marriages for us both so we’ve had struggles over the years) but have only married in December 2018. It’s ironic that this should have reared its ugly head  within 6 weeks of being married😔

Because he is older and the cancer is locally contained, Allen has not had surgery and doesn’t intend to because the

 

incontinence was a possible side effect he just wasn’t prepared to go through no matter what. The person that he is, he knew that this would completely effect both his working ( he still works full time and enjoys what he does)  and our social life. He’s a very private man and just would not cope. He also manages to put things into ‘boxes’ and worries about one thing at a time. I just wish I had that ability.

He has been on hormone therapy since February, has had two Zoladex implants and begins his 37 RT treatments in July. 

The Oncologist is optimistic that they will be able to cure him but he will need to stay on HT for a further three years. At his age he feels that he is happy to take the risk to stay relatively fit with a ‘normal’ lifestyle.He relies on me totally to research and discuss everything with both him and the doctors, it’s as though he’s passed that part onto me because this is what I do in life!! I’m happy to do it all but I guess I’m just tired ..... already ..... and we really have only just started the journey .....

Chris🤦‍♀️

 

 

 

Edited by member 22 Apr 2019 at 12:34  | Reason: Adding text

User
Posted 22 Apr 2019 at 20:45
I would challenge the requirement for HT beyond 18 months. Research has shown little benefit for the additional 18 months of HT especially it the onco is confident of a complete remission.

Something to ask your oncologist

User
Posted 22 Apr 2019 at 21:18

Originally Posted by: Online Community Member
I would challenge the requirement for HT beyond 18 months. Research has shown little benefit for the additional 18 months of HT especially it the onco is confident of a complete remission.

Something to ask your oncologist

This is something I'm planning on asking my consultant tomorrow.
I've read some papers on this, but they don't agree with each other (as you might expect).

For patients at high risk of failure of radial treatments (Gleason 8-10, or PSA >= 20 at diagnosis, or stage T3a or higher), some papers think HT longer than 18 months gives a significant benefit. The downside is it also significantly reduces the chance of full recovery from HT (although it's possible less than full recovery from HT also aids survival).

I've also found a older paper suggesting if you can get the pre-RT PSA to <= 0.1 with HT, then survival is improved and HT afterwards may not be needed (although this wasn't in the context of high risk cases). I might ask if I can aim for this level before RT, even if they do insist on me continuing with HT afterwards, as I'm sure they will.

User
Posted 22 Apr 2019 at 21:48
Be careful not to conflate different issues. Optimal HT with radical RT is different to optimal HT with salvage or adjuvant RT following failed surgery. Best timescale for T1 / T2 low or medium Gleason is much shorter than for T3 / high Gleason

Some oncos don't even prescribe HT to men having adjuvant or salvage RT, or to men having radical brachytherapy., HIFU etc. Some seem to recommend only 6 months for salvage RT (3 before, 3 after) and I note a recently joined member is having 6 months before and none after. Oncos will usually have a rationale for whatever they are recommending so I suppose the thing I would want to know is "why do you think this is the right amount of HT in this case?"

Also worth remembering that no-one is forced to do what the onco says; John stopped the HT early because he hated it. Si_ness has been a model of how to work in partnership with the onco to balance disease control with quality of life - Alathays, George and TopGun have all demonstrated the benefits of same approach over the years.

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

User
Posted 22 Apr 2019 at 23:52

I've no experience with hormone treatment but when I was diagnosed I became anxious and lost desire for quite a while.  Sometimes I could be lost in thought and perhaps more snappy than usual.  Also I did have a lot of thoughts about how she'd be if I wasn't around. 

What I find hard to understand is that most are saying in effect hormones robs you not just of libido but of basic human empathy if you don't want to touch your wife. You don't need sexual feelings to want to touch someone.  It makes me wonder how this is so and whether it's more about anxiety or feeling a need not to be a problem.

As someone else wrote it is a form of grieving.  Grieving is a staged process that normally you move through and adapt.  If you get stuck on a stage there are ways to get past it.  It must be difficult if you're ill and might not get better but even so there must still be stages of adaptation.   I'm perhaps wrong about the empathy and stages for this situation but that's how it seems to me. Regards Peter

User
Posted 23 Apr 2019 at 11:45

I think that your reply is very insightful Peter. I’m not sure why my hubby doesn’t reach out for a cuddle any more, but I’m guessing that it is because it often was a case of one thing led to another and now it doesn’t, so that’s probably why. The loss I’ve felt has been enormous over the years and that’s rarely acknowledged, certainly not by the health professionals, though they don’t mean to be unkind. If I were to sum up, I’ve lost my career, my sex life, my expected future and the husband I once had (he’s still here but he’s different). I try not to let it bother me as there’s no point, I’ve been grieving for nearly nine years and I still have to face the final loss. I adore my husband and don’t want to make his loss (he’s lost so much too) worse, so I never mention any of this to him.

I am a cup half full kind of gal most of the time, but I do recognise that over the years some of these things have tipped me over the edge. I’m deeply grateful that I still have my beloved man, despite his bloody illness, which has ruined our lives. I’m also sad that we have had to live like this, with the sword of Damocles over us and the horrible indignity and pain that he has suffered through these long years.

 

i hate this disease.

love to all of us suffering from it in our own way

Devonmaid xxxxxxx

User
Posted 23 Apr 2019 at 20:09

Hi I am 8 years down  this road ,13 years between us , I am 70 my lovely wife is 57 , , separate bedrooms no sex , no desire 
I have encouraged her to go on girly holidays , she has two a year ,we have an elephant in the room , if she wanted to leave me she could have everything I am not bothered , or if she asked me to leave I would , but she would always have my best wishs , my cancer has returned eighteen months ago so I know I am running out of time 
Do I love her YES 

Edited by member 23 Apr 2019 at 20:10  | Reason: Not specified

User
Posted 24 Apr 2019 at 08:05
Oh heavens, it’s so depressing to think that there are men out there with this that really don’t care if their wives stay or leave.

It’s one thing not to have any sexual desire but not to want to share their lives, no matter how difficult is just so very sad. 😰

I will battle to ensure my relationship continues In whatever way it can and hopefully we will always want one another in our lives.

Chris

User
Posted 24 Apr 2019 at 08:14

Wish mine would go out tonight so I can watch the Manchester Derby game in peace.

Edited by member 24 Apr 2019 at 08:15  | Reason: typo

User
Posted 24 Apr 2019 at 11:32

Hello Chris,

I think maybe you need to allow some time for the effects on Alan's mind to settle down. It is early days for you both yet. But saying that I don’t think you should settle for a life without sex just yet ! There are many ways to skin a cat and you both need to work together.

I went on HT Jan ’18 and am still on till this October fingers crossed. I had the HD Brachy and RT (23) as well, finishing last August. I am 64 and my wife is 55 so I’m very conscious that I need to think of her needs through this.

The HT affected me far more than the Brachy or RT. The HT, and probably the diagnosis initially caused me to unlock some boxes from a difficult childhood and so I really struggled at the beginning. Luckily I have a good counselor. But I did feel I needed constant comfort from my wife so I still needed the cuddles etc. In fact so much so that she wasn’t used to it and needed to tell me to back off a little! I had never cried in my whole life before and then suddenly I cry at the drop of a hat and wanted a hug…I had suppressed emotions from my childhood and suddenly they are all there - i was overwhelmed.....

I did try too hard at the beginning with regard to the sex and that actually wasn’t helping….I found the 100mg Viagra was great but is for a planned event and we just didn’t get on with it. So eventually settled on 5mg daily Cialis and can now , even whilst on the HT, have normal full sex. Maybe this is unusual while still on the HT I don’t know, but even before we got back to full sex I did my best to satisfy my wife. I have also luckily regained the desire and libido. So I wonder if a lot of the loss of libido is in the mind. The HT does devastate the mind and I know I will be seeing my counselor for some time yet……….there are no easy answers.

Your OH will likely be terrified of the future – I know I am. I had Gleason 9 so quite likely to have recurrence but you have to learn to not dwell on that and enjoy what you have.

Maybe you can find some time to talk about your needs to your OH. Although I think you mentioned him being very private which makes it more difficult. But then we never talked about intimate stuff before but we have discovered that we have to do it now.

You’ve turned off the motorway and are winding along a bumpy country lane now , but you might find something along that route that you would never have come across on the motorway. I feel we are closer now than we have ever been.

I hope you can find a route that suits you both,

Good luck.

Phil

User
Posted 24 Apr 2019 at 11:59
This is just such a fantastic useful thread with great input from so many people. My wife and I have been grateful reading through this as I will soon have to make a decision on HT. I guess no harm in at least trying it ?
User
Posted 24 Apr 2019 at 12:27

Chris J,

Yes I agree, and I understand your reticence to go on the HT. Absolutely did my head in and I am still suffering. What of this is due to just knowing you have cancer and what is actually due to the HT i don't know. All I know is what I felt and feel now. The HT certainly seems to affect everyone slightly differently.

I never completely lost my libido but seemed to lose the ability to exercise it 😒. But over the months my libido has returned to my normal level and so has my ability to have sex ( i'm pleased to say) . No idea how much the Ciallis has to do with that. But i suspect a lot has to do with confidence and not worrying about not performing. In other words the first time was a bit of a surprise - a pleasant surprise.

I am also working hard to offset any effects on muscle/bone development. Its an up and down journey as any illness or injury seems to take forever to recover from. But it feels so good to exercise so it must be good for you.... I've also lost nearly a stone now   - again good for the ego , which needs a polish up once you get this disease. So Tough Mudder on 4th May here i come 😬.

Just gotta find another job now as I finish this Friday - a bit earlier than planned. Agency work sucks - I should know by now after over 40 years ! 

Anyway, good luck to all out there, and like you Chris J i love reading about all the different journeys people are making.

Phil

User
Posted 24 Apr 2019 at 12:41

There were some earlier threads on this subject and a couple of long term forum members, both with spread managed to retain their libido and ability to have sex. They are fairly unusual but I think they key may be to address this as soon as possible upon diagnosis. I remember out specialist nurse asking us if we wanted help, and at the time we were so shocked (Gleason 10, spread to bones and lymph) we both said no. It wasn’t uppermost in our minds, survival was the only thing that mattered. The issue was never mentioned again sadly but John has survived nearly nine years, although frankly it’s an impossibility now for sure. I do wonder what might have been possible had we taken action back in the early days though.

A great thread, it’s the reality for many of us, in our case love overcomes it all, I’d never be unfaithful or leave my lovely husband. But I do recognise that this way of life may not be enough for everyone and there are ways to cope. The answer is to talk about it (we don’t as I don’t want to heap misery upon misery), if I could go back and change that, I would.

Thanks Catlady for raising this important issue.

love Devonmaid  

User
Posted 24 Apr 2019 at 13:00
I think yet again reading this , that communication as a couple is utterly key to a lot of this. Literally being able to face each other and put all your cards on the table and work out a plan. Many men lock themselves in a dark room mentally when their performance is destroyed by treatment , and their lovely wives are too scared to bring it up. It just causes more arguments and more stress and more ‘ shame’. Luckily my wife and I can talk about absolutely everything, and because of that 4 yrs on everything is back to normal after a shedload of effort from us both. Only things aren’t normal as I’m incurable. At what point I don’t know but further scans to check abdomen spread on 9th May , then a cruise , then results. I’m just praying I get the cruise , then work the rest out later. Goalhanger you have given me hope which I thank you for
User
Posted 24 Apr 2019 at 13:21

Absolutely agree, communication is key. It's not easy if you've never talked about this stuff before but start off lightly and work your way towards the deeper stuff.

ChrisJ i hope you can enjoy the cruise , you deserve it and hopefully the news on your return is not as bad as you imagine. Best of luck..

I had my bone scan and went on holiday to Finland and managed to virtually forget the PCa. Unfortunately my wife couldn't get it out of her mind.....luckily all was OK on our return and no mets.

Lets not let this damned disease destroy our humanity like it destroys our bodies.

Phil

User
Posted 24 Apr 2019 at 15:49

Hi Phil

What a fabulous, encouraging post. I thank you so much for putting my faith back in human nature and resilience. Allen and I have chatted over the past couple of days about lots of things and things are certainly better than they have been. I have told him that his irritability has hurt me and he agreed that he’s noticed that he has been short tempered and he’ll take that on board and wasn’t even aware that he had been distant with me with regards to the closeness between us. 

I’m so pleased that I posted and I’m happy if it has helped others too. 

Chris J, enjoy your cruise 👏🛳 and Phil, you go go go in the tough mudder in May🏃‍♂️🏃‍♂️

Chris 😻

User
Posted 24 Apr 2019 at 16:19
Chris, that is great !!! Just share and talk and you’ll find a way I promise. That’s what a marriage is after all heh — constant compromise. Looking forwards to things working out for you x
User
Posted 24 Apr 2019 at 21:18

Hi Cat lady

since I responded to your first post, I have worried that perhaps my reply didn't offer you any reassurance, and that was not my intention at all, and it did seem that several other replies were along the same lines. However one or two other comments have,I think, been more positive, and I would like to stress that while HT and it's effects have altered our lives in ways we would not wish, we have really tried to share the prostate cancer "journey", talking to each other in a way we perhaps didn't before the diagnosis. It hasn't always been easy, my husband, like yours, is a very private man and doesn't find it easy to talk about his feelings, but I hope he has learnt not to shut me out too much, and I try not to "nag" too much.  That said every now and then I do loose my cool, and feel the need to put my foot down when he is being especially stubborn or withdrawn!

The past three years have been a rollercoaster of emotions, fear and anxiety, but we have also had a lot of fun and laughter, and while the loss of our sex life is a deep regret, we know we love each other and have much to be grateful for.

I hope you are able to reach the same place.

Best Wishes

Fran

 

User
Posted 24 Apr 2019 at 21:42

Oh Fran, your first reply was welcomed and actually helped a lot especially as it was my first post. 

Everyone who has replied to it have given me huge insight into how other people are coping with this horrid condition and I appreciate every last piece of advice,  help and support. I certainly dont feel as isolated as I did this time last week!! 

Chris 😺

User
Posted 24 Apr 2019 at 23:04

HAHAHAHAHAHA

hilarious:)

 

Edited by member 24 Apr 2019 at 23:11  | Reason: Not specified

 
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