This is where we are.

Thanks for reading my post, and your sensitive replies.I think I'm getting my head around it all. Time is a healer, I suppose I wanted confirmation of a ' cure' although intellectually I'm aware this is not possible, emotionally I was ever hopeful. We are delightfully happy, and have lots of wonderful things in our lives. Getting this diagnosis was a real pain in a#$€.

I've had a career I love, David has followed his heart and been a pro musician all his life and are both fortunate enough to work when we want to, now that ain't bad.

I've gone from scared to angry with all stops in berween, feeling why us, why not us, why him. All this I know is futile, my professional background has taught me to manage all this in the world of work, but how different it is when it's your own loved ones, all that life long learning professional stance goes out of the window. We had a long chat peppered with tears and hugs, agreed we want to enjoy whatever life we have ( hopefully a long time:) so, delight in the day.

Sandra, your grandson is a wise insightful young man, I'm sure you are very proud of him and his insight. My thanks to him for wise words.

So, today, planning to have my nephew for part of the summer hols, booking some weekends away in the autumn we have a small holding so summer can be busy. Booking an appointment with the ED nurse.

We are both 61/ 66 respectively young at heart, reasonably fit and lots of living to do.... So getting all this into a manageable perspective seems like a plan, book some holidays, write music and breathe.

Thanks again.

Leila x

Awww thanks chaps, he seems a little better this week. Though the tiredness is still with him, he seems to be managing a little better. David has always been a fit healthy lad, working and doing all the time. The treatment and diagnosis has been such a shock.
To anyone reading this who is just embarking on this journey, my advice is ask questions, take notes, read and research from well credited sources.

This website is brilliant.

I have been able to attend all David's appointment with him, take notes and ask questions, one consultant we saw was a little affronted when I questioned his statements ' we are going for a cure dear boy'
Well David is Gleason 9, and had just managed to approach the concept of management rather than cure. We both found his hail fellow well met approach scorchingly harsh.
Our usual onco was very professional, he raised eye brow and smiled, although it was fairly clear he was not in the same camp.Although we have been given quite positive information so far.

Yes, of course we want a cure, but please don't give us false hopes...

David has managed to do some work this week, though he says he feels his body strength has reduced, playing for 20 mins knackers him, and playing a heavy guitar is hard going. On the thinking level, he is concerned his brain has gone to mush, although he has all his equipment there to work he manages couple of hours a day writing and editing.

I will collect him on Friday, he can come home for the weekend, he is really looking forward to this, see his cats, check on the garden, and sleep in his own bed.

Thanks again,

Leila

Chris, you may not be the "man" you were but you plod manfully on, which given your circumstances is excellent.

I hope that between you, you and El can still achieve closeness.

Leila, I hope you and David get some usable advice from the ED nurse. Although the sexual context is lovely it is the general feeling of well being and contentment that goes missing a bit if ED kicks in.

Good luck with it. I really hope something works for you, although perhaps when the HT comes to an end, libido will reappear.

As I understand it from those who've posted regarding ED, there is the possibility of penile atrophy so maybe just keep trying in order to keep the muscle "strong" enough for later. Maybe if David thinks of it in terms of future benefit he might be more inclined to keep trying.

Best Wishes

Sandra

*******

I honestly cannot see why you can't get NHS treatment. I think the protocol is to ask your consultant or GP to refer you. It's pretty shocking to have had to go private in these circumstances.

Kind regards

Devonmaid

Generally speaking the criteria for brachy are: PSA less than 10, Gleason 7 or less, prostate is not too large, and no urinary function problems. So it may be that brachy is not available to you anyway but you wouldn't know for sure unless you spoke to an onco who does brachy.

Depending on how 'locally advanced' it is, you might not find a surgeon willing to operate. Rather than go into the appointment with your hopes pinned on an ideal, it might be better to just read as much as you can (preferably from reliable sources like the toolkit) beforehand so that you feel knowledgeable about the options that are discussed in that meeting.

Edited by member 26 Jan 2016 at 11:46  | Reason: Not specified

Are you talking seed brachytherapy Leila as it's the only one I can comment on.

I got the other half the surgical pack from this site which supplied a few pads, wipes, carry bag. Ring and ask a nurse if they are still available. It was free but a small donation would help towards cost I expect.

I did also buy him some incontinence "pants" from Asda but they were quite fetching and feminine so although my husband had a laugh and wore them a couple of nights, yours might not be so happy about it.

I also bought a baby's one way cot liner, just for the area of his bottom, in case of leakage but a thick towel under his side of the sheet would probably work as well.

He may well have blood in his urine and semen for a while so keep the sheet/towel handy for any intimate occasions (assuming he feels like it after a while) as it may make a mess of your bed linen.

Something for constipation might be an idea. John suffered dreadfully and it was a couple of days or so before it righted itself.

All the best. I'm sure with your help he will be fine. John's incontinence didn't last over long fortunately

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

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 :-((

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

As mentioned above RT fatigue is quite different from the sort of "can't keep my eyes open" tiredness that everybody gets. Mine has really kicked in after 9 sessions although I noticed it after the first 4 or 5. I could best describe it as a genuine difficulty in putting one foot in front of another - a leaden feeling.

I find by not trying to do too much and by having a nap, I can manage it. It also comes and goes. This morning I felt particularly tired after nearly 9 hours sleep but that's on the back of 5 sessions. Writing this at 5 pm (ish) I am feeling a lot better. It's a matter of managing it and not getting frustrated - take that nap if you have to.

High Leila
So sorry you down at the moment , but the results are looking pretty good and the psa may drop further yet. Even the essentially cured members of the site constantly worry about recurrence etc. Whatever a persons treatment , it's an awful Rollercoaster that you are thrown on as a couple , and then can't seem to get off. I too am G9 and by the time they operated already had spread to 5 lymphs and bladder neck. More worryingly my post op psa results were awful and still rising , indicating fully advanced PCa although it has not been visualised yet. My wife and I are both 49 with a six year old aswell as two other children , so it has been an unimaginable almost two years since diagnosis.
You are not being weak at all. Your body is releasing its stress. You both need to do that. We both went through quite a grieving period , but are now reaching an acceptance stage and different closeness despite me being rendered impotent by the op. It does get easier. It has to or you would stop functioning altogether. And you might be fully cured. Try to enjoy the " summer " and each other.
Chris