This is where we are.

User

Posted 15 Apr 2016 at 12:42

I am also in 3mth injections have had the odd erection but its not affected my PSA levels so i think its nothing to worry about

Regards

Nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 15 Apr 2016 at 13:21

Thanks Nidge, Sometimes, we feel very ignorant on this journey, advice appreciated.

Kind regards

Leila

User

Posted 15 Apr 2016 at 16:20

Leila, separate out libido and erections in your mind. HT usually wipes out a man's libido but does not prevent erections - if you have ever had a son you might know that baby boys get erections when they are about to wee or just when their nappies are removed and exposed to fresh air. But baby boys don't have a libido. As well as that, not all men do experience loss of libido - look at Alathay's profile - he has been at castrate level for years but is still fully functioning in the bedroom. It may be that your OH hasn't lost his libido, or that he is simply due his injection or that the erection was due to a full bladder. I don't think you should be worried about it .... rejoice!!!!

The crucial question is "did he make the most of it?"

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

User

Posted 15 Apr 2016 at 16:28

Nice post Lyn
Quite an important distinction. The libido is ticking along lovely. The penis isn't playing ball. I don't know what's worse in this progression tbh.

User

Posted 15 Apr 2016 at 16:42

I think I am discovering the distinction between the 2 which Lyn very eloquently describes. One thing I have noticed is that the erections that accompany dreams (about anything by the way!) still occur although my libido is definitely down on what it was just over 3 months in to anti androgen therapy (bicalutamide).

User

Posted 15 Apr 2016 at 17:51

And as bicalutimide is less likely to knock libido out in the way that Prostap and Degarelix do, you then also have to factor in loss of libido and/or loss of erectile function as a result of the emotional impact of being diagnosed ... grief, fear, anxiety about self-identity, etc. It may be nothing to do with the hormones at all or a combination of factors!

Edited by member 15 Apr 2016 at 18:14 | Reason: Not specified

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

User

Posted 15 Apr 2016 at 18:11

64 million question Chris and I wrote about it on one of my old ED threads. What is worse - to be functioning but with no libido or to have libido but no functioning erection? And worse for who? Men with libido can engage in sexual contact and loving touch with their partner and many can and do experience pleasure and orgasm. Men with no libido might be able to engage in penetrative sex but it will seem false, bizarre or plain distasteful. On the other hand, many men describe a sense of calm and peace that comes with loss of libido although their partner may not feel the same.
The most moving thing I ever read on here was from a member describing the moment that he realised his libido had gone - looking at his (young) wife's behind with the same detachment as if it were a block of concrete. To feel that and be self-aware enough to recognise it must - in my mind - be the worst thing for both partners. And let's not forget that men with advanced PCa may simply be too ill to have sex - because of bone pain, mass muscle loss, extreme fatigue, lymphodema, incontinence and so on.

Men coping without a partner and those who are in the final stages of the disease must look at us lot and think how petty we are to stress so much about erections.

Edited by member 15 Apr 2016 at 18:13 | Reason: Not specified

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

User

Posted 15 Apr 2016 at 18:19

I have to say that no libido and no sexual functioning and not having a partner has given me a calm which has been very helpful. I remain emotionally engaged with friends and family, in fact those emotions seem stronger with the impact of over four years HT, but I have none of the frustration I felt before. Having advanced PCa with bone mets means this is not likely to change and to be honest the relief that the loss of both elements gives me, makes it one less thing to worry about.

It must be so much harder for those with a partner so my take on it is directly related to my circumstances!

User

Posted 15 Apr 2016 at 18:25

Very good conversation ! Sorry Leila if we've stolen your thread a little. Yes Lyn you have kind of been a mentor with all your advice. That's what I meant with my above post. My libido has hardly dipped since June last year ( 10 months today ) which means plenty of fun and sun is being had by both , which in fairness means we are coping admirably. And we have injections which work but tend to steal the moment. Ask us both privately , and I reckon we would both say lack of erection is very frustrating indeed. I expect I have injection therapy to come in time , and as you say is that good or bad ?? If a man doesn't even want it then surely it has to be better .....
But I worry about Mrs C J's desires too much to let go just yet. I know we are all different , but if I woke up with an erection one morning , despite being on injection therapy , the last thing on my mind would be whether the HT was working or not. It would be a smile moment , having had my last erection at the age of 48 three hours before surgery :-((

User

Posted 15 Apr 2016 at 21:35

Many thanks for such honest and sensitive response. The fear the HT not working was an after the event afterthought. We were both overcome by emotion and the moment. As a couple we have enjoyed a great physical relationship, the awful disease has changed our lives. Thankfully we can talk, discuss and admit our fears, feelings and thoughts to each other. I hope I have been able to show enough sensitivity, and support,as D.has said he feels he's lost his masculinity. So please people join in, share, I have gained a great deal here, and I continue to do so. So, in the meantime he's hoping for another rising to the occasion before Monday's HD Brachythearpy. Sharing the experiences highs and lows has shown me the strength and resilience shown by so many. Keep writing people, it helps so many of us.

Leila

Edited by member 16 Apr 2016 at 10:33 | Reason: Not specified

User

Posted 21 Apr 2016 at 12:48

David had his HD Brachytherapy on Monday, all seemed to go well, until his BP dropped like a stone causing, loss of consciousness for a few seconds. Thankfully he roused and his BP raised pretty quickly.He was in hospital overnight and able to leave the following morning for the three hour drive home.

Well, its Thursday now, he was tired and achy, but seems much better today. He said the experience was not painful, he had an epidural, and although he felt the ' goings on' it was not uncomfortable. He has a little bruising, and soreness, and his urine flow has been slow.

Bowel movements and urine flow slow but manageable I'm told. Appetite has not been affected, and he has been able to do a bit of writing to keep his brain active.

He is seeing the consultant in 10 days, and he then starts the radiotherapy in just under two weeks.

David found the waiting hard, he is relieved the treatment journey has started. He is hoping the radiotherapy will clear up any bits & pieces. He is Gleason 9 so although he hopes it will do the trick, he realises he might need further intervention.

From my perspective I am also relieved the treatments have started, watching my loved one's face when he tells me he's not worried, and its fear written large on his features. Supporting him though this jungle uncertainty.has been hard for us both.

This journey is long and difficult, I am sure much harder if your relationship is not secure and strong.

Oh well, tomatoes and peppers to pot on today.

The smallholding weeds wait for no-one ;-) if only they did.

Leila.

User

Posted 21 Apr 2016 at 14:43

Leica,

I hope that David's treatment plan goes successfully and I can understand only too well that he's pleased he's underway. It is still a worrying time for you both but as ever try to keep positive. I know that my wife found it very difficult initially. I kept noticing her glancing at me when she thought I hadn't noticed whilst I underwent RT and I could see the concern on her face. But actually I felt really positive throughout it all. Sometimes I think it's far harder time for the OH's than the actual patient !

Wishing you both well,

John

User

Posted 21 Apr 2016 at 15:52

Good to get going Leila - did you ask the consultant about your little morning surprise?

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

User

Posted 21 Apr 2016 at 17:13

Hehe lyn, I forgot, but managed a chat with consultant radiographer, her opinion was much the same as here. A gift is a gift. Thanks.

User

Posted 21 Apr 2016 at 17:47

Leila, I know it is difficult when you see the expressions and note that the I am OK bits do not match up, I had that when I see my wife saying she is OK about my situation (when I was diagnosed) and the look in her eyes showed how worried and scared she really was, possibly was the reverse when she looked at me and I said I was alright.

Now the treatment is under way it is better and easier to cope with and deal with one thing at a time. Whenever there are results to be waiting for it seems like a day takes a week to go by.

Best wishes for the future, regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 21 Apr 2016 at 19:46

Thanks Chris/ Woody, it does seem easier now the treatments under way. When he has the radiotherapy I'll be dropping him off and coming home to do the veg garden. We are more relaxed now, just the shadow of Gleason 9 at the back of our minds. David is paying for his treatment as we could not get it here in Wales, so over the border to England we go.... Radiotherapy avaialbe in Cardiff. The consultant is quite upbeat.so onward and upward we go.

Leila

User

Posted 21 Apr 2016 at 21:18

Leila, it is a long road with the HT and RT but one that has been fairly trouble free with just the usual side effects of tiredness, flushes hot and cold, tearful and loss of libido.

When John(Surr 33) and I were diagnosed we were given no information about penile rehabilitation and over the last twelve months have become more proactive about it since finding out that" if you don't use it you will lose it" we have both had to request pumps and tablets because they were not offered. Ask your urology specialist nurse about ED and they will help you. Normally it is offered as standard if a prostectomy has been carried out and ED is expected but nothing is part of standard if all you have HT and RT, seems to be a flaw in the system.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 30 Apr 2016 at 12:47

Thank you for all the replies. David begins his HT next Tuesday. his recovery from the HD brachytherapy has been mixed. The penile and anal soreness was a factor. Sadly the sudacrem was not for him. He found his cream for piles was the best. He also had significant problems with constipation & passing urine for the first few days. he is already described Tamsulosin, and was advised not to increase his dosage. The constipation was eased with fibrogel and cranberry juice helped the peeing. Initially the adrenalin high made him feel great for the first 24 hours, then he slowly but surely began to feel a bit groggy. Aided by insisting he could cut the grass.... but who am I to suggest it was too much.

Yesterday and today, feeling much better, and we plan to walk this afternoon. my routine is to trot up the hill three times a week, but to be excused and to be able to walk will be lovely.

As we live so far from the hospital, he will be staying down in the week, and I'll collect him for weekends. He plans to write and work from the cottage we have rented, if he feels well enough.

I plan to keep the smallholding veg garden going. We hope the RT won't be too hard going, he's just looking forward to getting it all over with, recovering, so he can get on with the fun of life.

We have been looking at winter breaks somewhere warm......

Any advice on managing RT would be greatly received.

Thanks again.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Leila

User

Posted 30 Apr 2016 at 19:53

Leila

"...David is paying for his treatment as we could not get it here in Wales, so over the border to England we go...."

Why are you paying for anything? This is what the NHS is there for.....I live in Mid Wales and ALL my treatment is done in Shrewsbury....

I get all my medications (Zoladex, Amlodipine) in my local GP for free and all the other "extra" (Stampede Trial) medications in Shrewsbury also free......All the costs associated with this (MRI, CT, Bone Scans, Blood Tests etc...) are covered by the NHS (as it should be).

Regards

User

Posted 01 May 2016 at 15:53

Hi Bill,
Yes,you're right, sadly David was not diagnosed by our GP, he had been complaining about problems for three years and was consistently prescribed Tamsulosin. His PSA was rising and he decided to take action and get a private scan. He then paid to see a consultant, after doing some research. The consultant did a biopsy and diagnosed Gleason 9 stage 3 with spread to the seminal vesicle. The consultant advised HDR Brachytherapy, if the tumour reduced sufficiently, which it did over 30% reduction.
He has paid for the Brachy, but has his RT, and hormone medication ( Prostrap) on the NHS. The consultant is aware we are self funding, and has been pretty good about fees, although its still lot of money. Made us realise how valuable our NHS is.

David has lost confidence in our GP practice,as he was advised it was watchful waiting, but not given any options or explanations about what this meant.He is not the type of lad who would challenge or ask questions about his health. He had been complaining to me for ages, and eventually agreed to take some independent advice, as he was so uncomfortable.

He's had the Brachy, and begins his RT next week. We live in quite rurally in Ceredigion, and our nearest hospital is Bronglais in Aberystwyth. Are you involved with any groups to do with PCa, as he's looking to meet the men in similar situations when he's able to do so.
All the best.
Leila

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