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User
Posted 25 Sep 2022 at 13:02
Hi Both

Thank you for your replies. When I have a telephone call with my consultant I tell him my results from the SHIM form I fill in, which result in a score of ZERO (severe ED). He mentions nothing about trying any other drug (Tadalafil). I do have a pump that I use occasionally, but I find that quite uncomfortable.
To be honest I think my consultant has washed his hands with me as he has told me to see the prostate cancer specialist nurse from now on! I am a year post op now though. Even though I am still having issues with incontinence and recurrent water infections too.
I'll look into buying some L-Arginine from Amazon.

Thanks again

Adrian
User
Posted 25 Sep 2022 at 19:53
No, don't just accept this Adrian. Ask your specialist nurse or surgeon who should be responsible for referring you to the ED specialist service - them or your GP? Whoever is responsible, tell them you want a referral. If there is no ED clinic in your area, it is your GP's responsibility to give you help with this - trying different tablets, trying the injections, etc.

You should also ask for a referral to the incontinence service and / or a specialist physiotherapist. That is probably your GP's responsibility ... what on earth is your GP doing???

It is very common for the surgeon to pass you on to the nurse specialist or back to the GP one or 2 years post-op.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Sep 2022 at 18:32

Hey Adrian,


 


Im completely with Lyn here, You kinda need to amplify your frustration at those concerned before any supplementary hope from Amazon and L-Arginine.


Wishing you well brother.


 


Jamie.


 

User
Posted 03 Oct 2022 at 13:03

Thanks for your advice guys,


I've got a telephone appointment with the specialist prostate cancer nurse later this month, I'll have a chat with him and see how that goes. Failing that I'll give my GP a ring.

User
Posted 08 Dec 2022 at 21:16

Just an update from myself, Upcoming Urololgy appointment has been postponed, hey ho. However bloods taken just 2 weeks ago show undetectable PSA. Happy days.My haemoglobin is low and warrants further investigation. Hopefully nothing sinister, Prostate cancer, loss of potency and all whilst losing my 16 year old Border Collie in 2022 surely means the law of averages are in my favour? 


Im only 47 FFS.


 


Hope we are all well.


 


Jamie.


 


 

User
Posted 08 Dec 2022 at 23:57

Great news on your undetectable PSA Jamie. Hopefully nothing to worry about with haemoglobin count…maybe they’ll give you some iron supplements? 
Really sorry to hear about your border collie 😢 our dog is our life so can’t even imagine.


You definitely deserve a break, enjoy your Christmas and new year x

User
Posted 11 May 2023 at 03:21

So, Just thought id give an update exactly a year since my operation. As our Dave said some time ago now, Its probably helpful to some to read about progress or even the lack of it.


Well Im 48 now,(😉) and grey hairs have recently decided to be prominent on my head. I dont think its PCa related to be honest, although you never know. 


Anyway, Im good. My last blood test, a month or so ago, had me at undetectable again. Im told my next one is in July and to be honest? Meh!.. I do my best to not allow it to occupy my thoughts for any second longer than it has to. Whats the point? 


Its been quite a year. Those first few weeks werent anything close to as bad as I thought they might be. It obviously wasnt pleasant but I think by week 3 I was pretty much feeling that it was in my rear view mirror. The first real obstacle was getting past histology. I think that appointment was always going to be the most nervy one and thankfully mine was as good as I could have hoped for. Physically, I seem to be good too. I was fortunate enough to have full continence immediately after my cathater was removed and since then have had no issues except when I need to pee, I need to be quick. Thats really the only physical difference outwith the potency issue. To be honest? I actually quite enjoy a pee these days. Back in December I went for my first night out since my op that involved a fair bit of Guinness. I found myself needing to go sharper than any other time in my life. Holy moly, I can still remember the fear. My old pelvic floor wasnt half put to the test. I thought my a*sehole was going to sink into some sort of black (white headed) hole, I was clenching it that much. Any kind of DRE at that point would have been utterly futile. It was awful. Anyway I got to the mens room in time only to discover that the the only pew available was in the middle of two gents. Never ideal. I will never, ever forget,as long as my arse looks south, the sound as my flow hit that aluminium wall. Firstly, it was my sigh of relief that I heard, before realising the guys either side of me might have thought they were in some sort of metal air raid shelter. PSSSHHHHHHHHHHHHH. I could sense their wtf moment, I wanted to reassure them that I wasnt normal. That id had my prostate removed.  But instead I just laughed to myself. It was utterly f*cking brilliant. As i walked home later that night, albeit as drunk as a skunk. I cried as I thought back to that pee. I sort of realised that for the first time since my diagnosis, I laughed at it. F*ck you prostate cancer. F*ck you very much. The b*stard had stolen my erections, my sperm and far far too much of my life. I realised that drunken night that I wasnt going to allow it to steal my laugh. It hasnt and it wont.


Anyway, erections? Nothing. Pretty much nothing for about 8 or 9 months and then, not a great deal but definite improvement. I had 80% nerve sparing and im currently, probably around the same percentage in potency. He cant stand up on his own quite yet but I will continue to give him as much encouragement as I can.


So on to year 2 I go. I think im blessed. Im definitely blessed when it comes to having found this community. There are so so many good souls here that are so undeserving of this shitty disease. 


Wishing you all the warmest.


Much love.


Jamie.

Edited by member 11 May 2023 at 03:32  | Reason: Not specified

User
Posted 11 May 2023 at 09:44

Great update Jamie!
Have had a few drunken evenings myself. At the one year point for me it did almost seem like a dream… mostly back to normal and fully back into ‘life’ and all it throws.


I’m 23 and a half months on now and facing next stage of treatment as the undetectable run became 0.04, 0.08, 0.1 and 0.2. So its a PSMA PET scan tomorrow and follow up with ONC on Wednesday. Fingers crossed.


Who knows - might start treatment on the second anniversary. That would be a bit weird.

User
Posted 11 May 2023 at 15:47
Good news. Being patient and persevering are two of the greatest attributes when diagnosed with PCa.
Barry
User
Posted 11 May 2023 at 19:09

Hey Chippers,  Good to hear from you sir. I did read on some other thread about your sudden barrier, didnt comment because it wasnt your thread but in truth? My shoulders dropped and it was obviously something I really didnt want to read. Your story also gave me the jolt that any confidence in the future always has to be tempered. 


I wish you all the very best for tomorrow and the follow up on Wed my man.


Im even cheering Spurs for you 😉


Jamie.


Originally Posted by: Online Community Member


Great update Jamie!
Have had a few drunken evenings myself. At the one year point for me it did almost seem like a dream… mostly back to normal and fully back into ‘life’ and all it throws.


I’m 23 and a half months on now and facing next stage of treatment as the undetectable run became 0.04, 0.08, 0.1 and 0.2. So its a PSMA PET scan tomorrow and follow up with ONC on Wednesday. Fingers crossed.


Who knows - might start treatment on the second anniversary. That would be a bit weird.


Edited by member 11 May 2023 at 19:14  | Reason: Not specified

User
Posted 11 May 2023 at 19:13

Big thanks Barry, You're one of the guys on here that as soon as I scroll and see that image, I stop and take note. Your input is always immeasurable.


Grateful doesnt go far enough.


 


Jamie.


 


Originally Posted by: Online Community Member
Good news. Being patient and persevering are two of the greatest attributes when diagnosed with PCa.

User
Posted 11 May 2023 at 19:17

Great post, thanks Jamie.

Dave

User
Posted 11 May 2023 at 19:44

Thanks Dave, As you know, you are one of the stalwarts of this site that has almost always had me p*ssing myself laughing at your candour and dry humour. Properly hilarious.


Wishing you well comrade.


 


Jamie


 


 
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