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User
Posted 25 Jan 2016 at 19:20

Oh well, here goes. My OH was diagnosed last year with locally advanced PCa, with Gleason 9. Since then I have tried to do quite a bit of reading, research and general nosing about.

What we have done so far. Cut our meat, diary, and we are juicing every day. I have persuaded him to come out with me for a short run recently . i try  and do a short 'trot' three times a week. My OH has been a successful runner for years, and found it hard to get back into it after initial diagnosis.

He is taking Pomi T tablets, various other supplements, so i hope this will increase his chances of becoming an old boy.

We are both fairly young in our outlook, at 60 & 65...lots of plans to fulfil & places to go. We grow all our own veg and try not to eat processed foods.

I have to admit he does find the diet a bit hard going, but is keen do the best for himself. Any suggestions advice or ideas would be brilliant. 

He does not research much, its hard going for him, so I do that... I've downloaded the Tool Kil.

Scan was on 21st jan, seeing the consultant on 4th Feb, when we hope to have a better idea of the best care / treatment plan for him. Any ideas or advice on this matter would be appreciated.

We are currently paying for all this, as the GP did not refer him for three years. Self referral last autumn revealed the above.We ain't rich and We hope that the practice will support him  to get the best treatment. We have discussed the best way of promoting good care for PCa men as a complaint won't do much cop, in our opinion. Would like to use the NHS if he can get the treatment he needs. 

We live beautiful remote valley in Wales, love travelling, walking and life, and want to continue doing so for a long time if we can.

This has been a real blow, but we are now beginning to regroup and look at options.

If you have done, thanks for reading this.

 

Leila 

 

 

 

User
Posted 15 Jul 2016 at 17:09
Dear Chris John & Sandra,

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

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 11 May 2016 at 11:25

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

User
Posted 15 Jul 2016 at 09:12

Morning Leila,
Chris and John have given you very good advice.

I doubt that anything any one of  can say will reassure you about the future. None of us know what that is, even if we didn't have cancer.

Hopefully what will help is the continued support from all of us.

This feeling is a sort of anti climax. You originally geared yourselves up for the knowledge of PC, diagnosis and treatment and the worries they produce are a great strain, not only on the body but on a relationship.

You are out the other side now, with good news so you go up on an emotional high but that background fear is dragging you back down again and will continue to do so if you let it, therefore it will "spoil" the future.

You cannot change that future so let it be that. The future. Today is the important day. The one that is there in front of you both, and it will continue to be.

I hope you can both get over this blip, in fact I'm sure you can. You are together for each other . Live for each other - let the future take care of itself

We can't control the past so we live with our regrets and memories. We can't control the future so live for today.

All the best

Sandra

PS the following quote is one of my grandson's favourites. Having had inoperable cancer at 13 he too has the constant fear that it will return but he living his life to the full and this wording was given to him while undergoing treatment.

********

Edited by member 15 Jul 2016 at 17:29  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 21 Jul 2016 at 11:33

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

*******

We can't control the winds - but we can adjust our sails
User
Posted 25 Jan 2016 at 20:36

Leila, did they start him on hormones as soon as they diagnosed him as locally advanced?

Edited by member 25 Jan 2016 at 20:37  | Reason: Not specified

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

User
Posted 25 Jan 2016 at 21:25
Hi and welcome

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

User
Posted 25 Jan 2016 at 22:04

Hi Leila,

Your OH is already experiencing the benefit of HT in as much as he is being able to pass water more easily. Also, this treatment not only helps shrink the Prostrate but restrains the advance of PCa, usually for quite some time and often as a precursor to RT of one form or another. I agree that it would be a good option to get this referred and adopted by the NHS in your circumstances. The actual treatment choices are likely to be the same and as well executed in the NHS or as done privately. The latter sometimes means quicker appointments and in more comfortable surroundings but as OH on HT now it is unlikely that there is an immediate urgency to have other treatment in the short term.

Edited by member 25 Jan 2016 at 22:06  | Reason: Not specified

Barry
User
Posted 26 Jan 2016 at 11:45

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

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

User
Posted 07 Feb 2016 at 01:20

Well if they are offering brachy then you can be confident the back and stomach pain isn't anything to do with the cancer. Most likely explanation of the backache is the hormones - his ligaments are probably starting to slacken and he may also be starting to lose muscle tone. The stomach ache could just be anxiety / stress .... the body's reaction to news that you have cancer sometimes only kicks in properly once you have a treatment plan, and often presents as physical symptoms. I am not sure whether stomach pain is also a known side effect of the hormones but you could ask the pharmacist to check for you.

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

User
Posted 11 Feb 2016 at 12:43

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

We can't control the winds - but we can adjust our sails
User
Posted 11 Feb 2016 at 14:53

Hi,

Can't write about effects of Brachy but I frequently and urgently needed to pass water during and for a couple of months or so post RT. I found out in advance where all the toilet facilities were on my journey for RT and having once had to stop a coach on a motorway - it had a locked toilet - I got my GP to arrange for me to to be supplied with the bag, tube and disposable sheaths to penis that worked well. It takes away the desperation of needing to go by not knowing where there is a suitable place. I did at first find it a strange feeling to know I was passing water in this way maybe even as I was speaking with people but you get used to it. I did also obtain a chit from my GP saying that I had incontinence problem so in need I could seek the co-operation of shop owners etc where there was not a customer toilet.

My need to pee gradually returned to pre RT level. However, I still keep a plastic reusable version of the type of urine bottle found in hospitals in my car and this has served it's purpose on motorway hold ups and the like two or three times so I would recommend.

Barry
User
Posted 15 Apr 2016 at 12:42
Hi

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 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 18:25

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 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 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 07 May 2016 at 17:24

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.

User
Posted 15 Jul 2016 at 07:37
Leila,

Good to hear from you again and I'm pleased that David's score is now at 0.1. I can understand what you have written though. You should be pleased but there is always that fear of recurrence behind you too ? This is a horrible disease and there are always uncertainties with it. I'm seeing my Onco in just under 2 weeks now, 18 months post RT. As I have tertiary G5 I am always nervous before each meeting and I have yet to go below 0.2.

My wife and I have decided that we will just get on with our lives, enjoy each day as we can and worry about the future as and when we have to. Having this site is just so great for me and even my wife's antipathy to it is waning now. Knowing you are not alone in how you feel and experience is so beneficial.

So enjoy the summer - when it comes !

Best wishes,

John

User
Posted 15 Jul 2016 at 07:47

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

User
Posted 01 Sep 2016 at 13:33

Could be urinary tract infection Leila - or proctitis. Ask GP for a thorough urine test, maybe?

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

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User
Posted 25 Jan 2016 at 20:36

Leila, did they start him on hormones as soon as they diagnosed him as locally advanced?

Edited by member 25 Jan 2016 at 20:37  | Reason: Not specified

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

User
Posted 25 Jan 2016 at 21:21

Hi Lyn,

Thanks for your response, yes, he started on Prostap 3 DCS within about 4 days of his diagnosis. He is in the throws of wondering what sort of treatment he will discuss on the 4th Feb. Any suggestions... he thinks the tumour has shrunk as he can now pee properly  for the first time in a long time. We are aware that Gleason 9 is aggressive,he's a fit healthy lad, and hopes for the best.He has lost quite  lot of weight on the new food regime. He was slightly o/wieght, not a lot.

 

Leila 

 

 

Edited by member 25 Jan 2016 at 21:27  | Reason: Not specified

User
Posted 25 Jan 2016 at 21:25
Hi and welcome

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

User
Posted 25 Jan 2016 at 21:31

He was so upset that he had  to get his own diagnosis, that his faith in our practice is at an all time low. He is getting the hormone treatment on the NHS. If he can get the right treatment on the NHS we will definitely use them... The consultant we are seeing is acutely aware we are self funding.

 

User
Posted 25 Jan 2016 at 22:01

Really sorry to read about your difficulties in getting seen. It does seem the sticking point was your GP's failure to refer which I find difficult to comprehend and I am so glad I did not have similar problems with mine.

Now you are in the system as it were, there should be no issue with getting treatment on the NHS from here on in.

All the very best to you and your OH.

User
Posted 25 Jan 2016 at 22:04

Hi Leila,

Your OH is already experiencing the benefit of HT in as much as he is being able to pass water more easily. Also, this treatment not only helps shrink the Prostrate but restrains the advance of PCa, usually for quite some time and often as a precursor to RT of one form or another. I agree that it would be a good option to get this referred and adopted by the NHS in your circumstances. The actual treatment choices are likely to be the same and as well executed in the NHS or as done privately. The latter sometimes means quicker appointments and in more comfortable surroundings but as OH on HT now it is unlikely that there is an immediate urgency to have other treatment in the short term.

Edited by member 25 Jan 2016 at 22:06  | Reason: Not specified

Barry
User
Posted 26 Jan 2016 at 11:06

Thank you for the responses, yes, I think the advice to explore the NHS is good. I will talk to him about it over the next few days. He was looking at Brachytherapy as one option, but its not available in Wales. We have also read that surgery before radiotherapy can be better..... as its not a option afterwards,what are the views on this? 

Weather in our valley is awful today, high winds and torrential rain, no trotting up the hill me thinks, a day working from home :-)

 

Thanks 

Leila 

User
Posted 26 Jan 2016 at 11:45

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

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

User
Posted 26 Jan 2016 at 12:58

Good advice, i will spend some time reading,I have the tool kit.We are still coming to grips with all this. My OH is not to keen on researching, it scares him,its left to me.My plan is to go to the next appt with questions and information, so he can look at viable options.

User
Posted 26 Jan 2016 at 15:35

I had to be the researcher too Leila.

Though your private consultant is aware that you are self funding he should be able to transfer you to the NHS with little trouble, especially if he is the same consultant you would see under the NHS, it would just depend I suppose on the urgency of any treatment needed.

Good luck, hope it  all works out OK for you

We can't control the winds - but we can adjust our sails
User
Posted 26 Jan 2016 at 17:35
Leila

Not sure if we were in the same boat, my GP missed a raised PSA, three years later after another PSA test I was fast tracked to our NHS Urology centre and the ball was rolling.

I was fortunate to have medical insurance but when I enquired about private treatment the guy who rang me was the same consultant I saw on the NHS, he said I would be better going the NHS route due to better equipment at our local hospital, he still treated me at the NHS facility.

An ex work colleague self funded initial consultations but had RT, again at our local hospital.

Thanks Chris

User
Posted 26 Jan 2016 at 17:50

We live in Wales, and it can be difficult to get treatment in England. My OH is seeing an onco & urologist in Bristol, as when we did the initial research the urologist we contacted was able to answer our questions. I know my husband gets on well with the urologist and seems to trust his judgement... whether he can treat him on the NHS is another matter.

Our GP practice have not been too forthcoming or supportive, and as se love very rurally the options are limited.

User
Posted 07 Feb 2016 at 00:25

Saw the oncologist on Wednesday, he has advised Brachytherapy, followed by radiotherapy. OH's tumour has shrunk by about 30%, the Dr. said this was really good. OH had his hormone injection last week as well, this was the 2nd one. He is experiencing lower back pain, and stomach ache. Not the sort of chap to take advice unless he has to.... subtle advice from me can be gently fed in sometimes. Any advice from you lovely people? Oh, he had a PSA test last week as well, awaiting results of that.

He has given up diary and meats, juicing fresh veg drinks every day... reduced alcohol intake ( was not over the limits before)
Could any of this contribute to his pain? Should he be taking further advice?

Thanks

Leila.

User
Posted 07 Feb 2016 at 01:20

Well if they are offering brachy then you can be confident the back and stomach pain isn't anything to do with the cancer. Most likely explanation of the backache is the hormones - his ligaments are probably starting to slacken and he may also be starting to lose muscle tone. The stomach ache could just be anxiety / stress .... the body's reaction to news that you have cancer sometimes only kicks in properly once you have a treatment plan, and often presents as physical symptoms. I am not sure whether stomach pain is also a known side effect of the hormones but you could ask the pharmacist to check for you.

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

User
Posted 11 Feb 2016 at 11:26

Can anyone give me some tips so I can support OH after his brachy, followed by a course of radiotherapy two weeks after. We DONT not have dates yet, but I'm a gal that like to plan and prepare.
Do I need to get him pads or waterproof bed covering? I don't want to embarrass him just be prepared.
Thanks

User
Posted 11 Feb 2016 at 12:43

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

We can't control the winds - but we can adjust our sails
User
Posted 11 Feb 2016 at 14:14

Ahhh, sorry, he's having high intensity brachytherapy, not seed. Thanks Leila

User
Posted 11 Feb 2016 at 14:53

Hi,

Can't write about effects of Brachy but I frequently and urgently needed to pass water during and for a couple of months or so post RT. I found out in advance where all the toilet facilities were on my journey for RT and having once had to stop a coach on a motorway - it had a locked toilet - I got my GP to arrange for me to to be supplied with the bag, tube and disposable sheaths to penis that worked well. It takes away the desperation of needing to go by not knowing where there is a suitable place. I did at first find it a strange feeling to know I was passing water in this way maybe even as I was speaking with people but you get used to it. I did also obtain a chit from my GP saying that I had incontinence problem so in need I could seek the co-operation of shop owners etc where there was not a customer toilet.

My need to pee gradually returned to pre RT level. However, I still keep a plastic reusable version of the type of urine bottle found in hospitals in my car and this has served it's purpose on motorway hold ups and the like two or three times so I would recommend.

Barry
User
Posted 15 Apr 2016 at 10:28
My OH woke up this morning with a ' usable erection' this gave us both mixed emotions. He is on pros trap three monthly injections, the next due April 29th. Due to have HD Brachythearpy on Monday. Should we be concerned that the pros trap is not working, or just its nearly due again.

Any advice please.

User
Posted 15 Apr 2016 at 12:42
Hi

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


User
Posted 07 May 2016 at 12:18
David has had his first week of RT, so far so good. When I talked to him last night he said he had never felt so tired in his life. He's normally fairly active and gets things done, is this level of fatigue usual?

Coming back to the cottage I've hired for him near the hospital he said he felt so ill he was staggering. I'm going there tomorrow for a couple of days. I hope having company takes his mind off the fatigue.

As we live a long way from the hospital this was the best round his daily appointments.

His bowel functions and bladder seem to have settled down, as he was in some discomfort there too?

His initial aim was to work whilst he had the treatment, manages a bit of writing, but he says his concentration levels have dropped to an all time low.

Thankfully he can do a bit when he chooses, he's fortunate in that way.

Leila

User
Posted 07 May 2016 at 15:23
Leila,

RT fatigue is quite honestly something else. You have to experience it to appreciate it. But not all patients have it. It's not like normal tiredness, easily cured by a nap. For me it was like living in a vacuum , a fog, but was not there all the time. I had one day about 10 into the treatment when I felt so awful at work. ( worked am's , RT PM's) . Everything seemed fuzzy and concentrating on 2 computer screens was almost impossible. And everything became an effort. I had my weekly review with the senior radiographer that day and was told that my reaction was probably a tumor flare - the PCa reacting against the RT. It settled down after that.

I'm glad that you've found a cottage to be near your hopsital. Reduced travelling time will really help. And the bladder and bowel situation usually sorts itself out. Just ensure that he asks for help if he needs it , there are plenty of good meds around to assist. His centre will be able to assist.

Wishing you both well

John

User
Posted 07 May 2016 at 17:24

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.

User
Posted 11 May 2016 at 11:25

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

User
Posted 23 May 2016 at 22:15

David is over halfway through his RT he had his halfway meeting last Friday. He is coping better now he we have arranged his treatments so he gets almost three days at home.
Last two weekends he's managed to do some work in the garden, this delighted him, and me, we have lots of garden. Although he gets very tired, he finds doing some practical stuff at home quite therapeutic, and we enjoy the results. He is aware the treatment is cumulative and he still has two weeks to go.

At the beginning of this journey we were scared, ill informed, I think we are a bit more settled and in control. We hope to have a good summer, and he is able to enjoy some time recovering.

David loves his cats, and missed them a great deal. The small female Suzie has managed to dismember two rabbits on the sitting room floor, and I was presented with live mouse at 5am, breakfast in bed.
The weeds in the poly tunnel are beginning to realise I'm in charge, and the tomato Poly is looking better. This year we Possibly grow less.
This disease has really hit us both hard, in many ways, reeling and recovery can take time effort and resilience. Keeping some routine and order in life has helped us through the toughest of times.
Summer hopefully will bring us the joys of friends to visit, getting back to out work schedule and seeing family, all these things help.

Early July a PSA test, then seeing the onco end of July.

If all goes well a decent holiday will be booked later in the year.


" it's not just what your born with but what you choose to bare it's not how large your share is, but how much you can share. It's not the fights you dream of but the ones ones you really fought, it's not just what your given, but what you do with what you've got "
Si Khan.

User
Posted 23 May 2016 at 22:27

Good luck for the second half Leila.

I wish him (and you) well.

Good luck with those weeds (and slugs - have you got slugs? those ghastly long yellow things that look like small snakes. YUK YUK YUK. I have !!

We can't control the winds - but we can adjust our sails
User
Posted 23 May 2016 at 23:17

Johan,Yes, we have slugs and a great crop of snails too. We don't use pesticides, but I'm dab hand with a spade at killing 'em. I also use salt but not too much.
The big yellow things are horrible, and yes we have lots of them too.
Running the small holding single handed is hard going, I've grown less this year. Concentrating on tomatoes peppers and strawberries.... And a few root veg. The spuds have sprouted and this year I've just let them. I think it's called wild gardening. Yesterday I gave a load of tomatoes away, too leggy to,sell and we have enough potted on.

I was a gardener many moons ago David had never grown anything until about seven years ago.we both love it. We are aiming at self sufficiency and not doing too bad. This awful disease has stopped us in our tracks. But we are determined to keep going. We don't have livestock, well, two cats one hunts, the other doesn't.

Thanks for your good wishes.

Leila.

User
Posted 14 Jul 2016 at 22:57

I have not posted for a while. David has finished his treatment HD Brachytherapy & a month of radiotherapy. He saw the oncologist yesterday, his PSA is now 0.1 the consultation has given us mixed emotions. David has a Gleason 9. It's hard to hear that the cancer might return, we have both found it hard going today. Has a further PSA test in three months and a scan in December, when he will hopefully get further details. In the meantime I'm sure we will enjoy the summer, as we can't change the future. If his PSA goes over 3 oncologist will review options. His highest PSA was7.5 yet tumour too bulky to operate.
Not sure how I feel, I'm trying to be strong for us both, but I'm wobbling a bit inside my brave and professional front. Reading other posts people here seem very emotionally resilient .... I do feel a bit of a woos.

Leila

User
Posted 15 Jul 2016 at 07:37
Leila,

Good to hear from you again and I'm pleased that David's score is now at 0.1. I can understand what you have written though. You should be pleased but there is always that fear of recurrence behind you too ? This is a horrible disease and there are always uncertainties with it. I'm seeing my Onco in just under 2 weeks now, 18 months post RT. As I have tertiary G5 I am always nervous before each meeting and I have yet to go below 0.2.

My wife and I have decided that we will just get on with our lives, enjoy each day as we can and worry about the future as and when we have to. Having this site is just so great for me and even my wife's antipathy to it is waning now. Knowing you are not alone in how you feel and experience is so beneficial.

So enjoy the summer - when it comes !

Best wishes,

John

User
Posted 15 Jul 2016 at 07:47

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

 
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