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User
Posted 24 Jun 2018 at 07:28

Do you not have specialist prostate nurses at your hospital. We have 2 and they will phone , stop , talk and listen. And they can relay info to the Onco if you don’t have time at the appt. Or the nurses on here mate. They not consultants but they know all the ins and outs of treatments. I get the 51 thing as I was 51 lost month also and have asked for my specialist nurse to be at my OOnco appt next Friday with an incurable psa expected to be around 50. I’ve asked him to come along as I’m at the point where I may seriously reject further treatment at all. I’m 3 yrs on from surgery but am bipolar and despite many good times , my life is overall bad and surrounded with guilt over my ability as a father husband lover , and I’m basically just pretty damaged all round with a strong liking for booze and escape.
BUT your path at the mo is still different. I’m sure RT side effects pass by and lots of men now ok. ED can follow later but as we all know this cancer causes life changing issues however you tackle it. Don’t give up ok brother.

Edited by member 24 Jun 2018 at 07:47  | Reason: Not specified


If life gives you lemons , then make lemonade
User
Posted 28 Jun 2018 at 03:06

Hi Richard and Lyn plus others  !!!  wow I recently joined the club  52 years old, Gleeson 7   PSa5.97  anyway I have taken the last hour plus catching up n your story Richard  life is so fu...ing cruel sometimes. I am not a Religious man but I am throwing all my positive energy at you Richard. Lyn you are so inspiring as well I feel privileged to have access to you dialog. I am at the stage as well where I really want some guidance I live in Australia  where the oncologists all they want to do is remove the prostrate entirely  as you all well know that is a sexual no no  as well as a incontinence no no !!  so I have looked into other options  I am to far for watch and wait..  RT  or IMRT I think is the same in Australia is one choice  but I think I am leaning towards Proton Beam therapy  and Prague seems to be the clinic to go to  can anyone help me with direction on this  is anyone else doing this treatment or about to ? I have been accepted yesterday in having said that I just want to make sure this is the right choice for me. Thank you everyone 

User
Posted 02 Jul 2018 at 16:18

Originally Posted by: Online Community Member


Hi Richard and Lyn plus others  !!!  wow I recently joined the club  52 years old, Gleeson 7   PSa5.97  anyway I have taken the last hour plus catching up n your story Richard  life is so fu...ing cruel sometimes. I am not a Religious man but I am throwing all my positive energy at you Richard. Lyn you are so inspiring as well I feel privileged to have access to you dialog. I am at the stage as well where I really want some guidance I live in Australia  where the oncologists all they want to do is remove the prostrate entirely  as you all well know that is a sexual no no  as well as a incontinence no no !!  so I have looked into other options  I am to far for watch and wait..  RT  or IMRT I think is the same in Australia is one choice  but I think I am leaning towards Proton Beam therapy  and Prague seems to be the clinic to go to  can anyone help me with direction on this  is anyone else doing this treatment or about to ? I have been accepted yesterday in having said that I just want to make sure this is the right choice for me. Thank you everyone 



hi thread I am 56 I had my prostate removed just before my 54th birthday, I am not sorry to inform you that having your prostate removed is not a end to sexual activity, and as for incontinence I ran 200km in May during radiotherapy without the need for wet look shorts :) .  I am not saying you will have the same experience as me, but please do not post "as we all know" because we are all different. Mel  

User
Posted 06 Jul 2018 at 21:19
I agree with Mel - John was 50 at diagnosis and 9 years later has no continence problems and no problem getting an erection (okay it was tough for a while but we got there in the end).

Proton beam therapy has had some really good results as a salvage treatment but not as a primary treatment so I would caution you not to spend a lot of money without researching very very carefully.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Jul 2018 at 20:48
Hi everyone,

I clearly don't fit in here and it is causing me more bad effects than good by a long way. I'm sorry my posts seem to offend people and maybe there were too many but I didn't mean any harm. It was, however, blatantly obvious that I wasn't "fitting in".

I have tried to delete all my posts but it is not quite as easy at it seems. Good luck to all pc sufferers and OH's who represent them!

Richard
User
Posted 14 Jul 2018 at 22:23

What has happened to bring this on Rich? If you read some of the responses on this thread you can see that a lot of people have been following your progress and are genuinely interested in trying to help with whatever problems you are facing.


I appreciate that we can't always help but your contributions have also helped others.


You have to do what makes you comfortable but it will be a shame to lose you from the site.


Hopefully tomorrow will be a better day.


All the best


Kevan 

User
Posted 14 Jul 2018 at 23:27
Hello Kevan,

I just got a genuine feeling (for 3 months?) that the big hitters on this site just did not give me any credibility. They literally ignored me or patronised me. I was/am genuinely scared. I am 51 and diagnosed T3b Gleason 9 and told 50% chance of reaching 60. and these people upset me a lot as they said outcomes are much better.........

So from now on I am doing this with my famlly and not PCUK

Thanks Kev!!
User
Posted 15 Jul 2018 at 08:23

Good morning  Rich


Thanks for replying. 


Sometimes the problem with written responses is that they can be difficult to interpret as you can't hear the tone of voice or see the visual cues that we normally use. This can lead to misunderstandings which may have happened here.


Like you I am a Gleason 9 T3b but I am possibly more fortunate in that I am 69 and so the future is not quite such a worrying place to contemplate. I have no children and so I do not have that extra burden of responsibility all of which makes it harder for  me to help you as I am not walking this path in your shoes.


What I would ask is that you make the most of each day as regardless of PCa none of us knows how long we have so wasting today worrying about tomorrow robs you of precious time.


Today I shall be driving from Swindon to Dartmoor to drop off students at the start of their Duke of Edinburgh Gold expedition and then I shall drive back. I am looking forward to it. I can't do the pick up on Thursday as I shall be on my way to Canada to visit friends.


I am just trying to say that we share the same diagnosis and with support from family and friends we can simply carry on carrying on until that ceases to be an option.


In the meantime you are still Rich I'm still Kev the difference is that we know we have PCa.


I sincerely hope this isn't the last I hear from you but I respect your decision about that.


My very best wishes to you and your family.


Kevan 

Edited by member 15 Jul 2018 at 08:24  | Reason: Spelling error

User
Posted 15 Jul 2018 at 10:36
I don’t think people are ignoring you Rich. The site has changed quite a lot and is transitional as new people join all the time. I suppose I was a big hitter when I joined three years ago. Just as panicked as you I was. I’m 51 and G9T4N1MxR1.
I too have been told I won’t reach 60. Maybe only 56. I’ve actually accepted all this and have still refused RT for a fourth time. Maybe I’m stupid but I’m just living and enjoying QOL whilst I can. My own choice. I don’t post as much as quite frankly coming on the forum can be very depressing and lower my mood. Do you want to speak to someone ? ( me ? ). I’ll help if I can

If life gives you lemons , then make lemonade
User
Posted 15 Jul 2018 at 11:05
Thanks Kev, thanks Chris. I genuinely felt guilty as I was on the most popular post top 5 list but only as I was a neurotic posting 4 times to others one. I must have come across as being very needy. I also felt guilty Chris as I wasn't as bad as you (officially) but may go in any direction. The site was such a help at the start but then began to be like a drug in that I could not get enough. I don't know how this will turn out but I don't mind admitting I am scared and I unfortunately have a grim outlook.
I have unloaded on you lot but if you asked the lad who sits next to me at work he wouldn't have a clue (maybe he would say "he kept disappearing every day at 2:30pm "- for RT). I raised £1450 for PCUK just by changing my Facebook birthday request to ask for donations instead of presents (????). There are people who donated £50 and won't speak to me yet clearly know I have pca? I am however great at work as it is such a good distraction.
Anyway - I have "reset" and want to try again.
Richard
User
Posted 15 Jul 2018 at 11:23
Well done. When I first joined the site I had a different post. It was something like Help , any advice welcome. I was ranting and panicking and denying and threatening suicide , rejecting surgery etc etc etc. Sounds a bit glib but acceptance will come in time. It doesn’t make everything right but it makes things easier. My best suggestion to you is to find a good councillor and see them weekly. Ok it costs me £40 a pop but worth its weight in gold. Don’t give up mate please don’t. You have to try and make the most of every day. Concentrate on Now and not the Future. It really helps.

If life gives you lemons , then make lemonade
User
Posted 15 Jul 2018 at 13:59

Hi Rich, I have always rend your posts with interest and tried to answer when I was able.


I also have a very uncertain future due to the pathology of my disease and how quick it returned after prostatectomy.


It is very difficult dealing with the uncertainty.


I would particularly endorse what Kevin has saying about the written responses. You have no visual cues etc. 


This makes misinterpretation very easy.


We used to have issues at work with people falling out over misinterpreted emails.


I for one decided to discuss things face to face which was much better.


I realise this isn’t possible here.


I would also endorse what Chris and Kevin have said about livng each day to the best.


It would be a real shame to lose you from the site, I see you and the others here like family as we all are travelling the PC road. There is an understanding here that you won’t get elsewhere.


Take care, Ian.


 

User
Posted 15 Jul 2018 at 15:18
I’m genuinely overwhelmed - menopausal or not you have humbled me gentlemen. Thanks so much, I would be a fool to go as you have reminded me how powerful this community is. I am in your debt again.
Richard
User
Posted 15 Jul 2018 at 18:21
Just glad your not going Rich. All the best Geoff.
User
Posted 15 Jul 2018 at 18:50

HI Rich


Just got back from Dartmoor and so pleased to see the responses you have had and great news that you will stick with this strange and varied community.


Made my day - so keep talking to us.


All the best,


Kevan 

User
Posted 15 Jul 2018 at 19:00

Hi Rich, don’t take the number of responses you get as some kind of measure of how much people care; it just doesn’t work that way. Yorkhull is one of the kindest cleverest people I have ever known and some of us care deeply about his progress but you will see that few comment on his posts. Likewise, my updates on J and dad produce very little response - it isn’t a popularity vote, simply that sometimes there isn’t much left to say :-/

Edited by member 15 Jul 2018 at 21:40  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Jul 2018 at 19:06
God Lyn you Rock!! Well mostly anyway. All too true words. The forum moves ever forward and sometimes we are all just too tired. And the weekend is never good. Your contribution to the forum is phenomenal xxx

If life gives you lemons , then make lemonade
User
Posted 15 Jul 2018 at 19:34
What do you mean, mostly????
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Jul 2018 at 19:35
Lol , you know well ,-)) x

If life gives you lemons , then make lemonade
User
Posted 15 Jul 2018 at 19:59
"Lovey" ?????? I refer to big hitters and that most certainly includes Chris, Lyn, Kev and Ian. You lot make me cry all the time but its not my fault it's the hormones.
User
Posted 15 Jul 2018 at 21:06
If Lyn didn’t like you then you’d know by now. She has replied to many of your posts which is a good thing I promise you.

If life gives you lemons , then make lemonade
User
Posted 15 Jul 2018 at 21:40
I type the way I talk - sorry. Amended :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Jul 2018 at 21:49
I know Chris
I use you and Lyn as my benchmark. Simple as........
I am so very tired but thank you all
Night night,............
User
Posted 15 Jul 2018 at 23:12
Night night
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Jul 2018 at 23:18
Don't let the bed bugs bite!
 
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