Today marks my 5th Ralpiversary. Woohoo!
A lot has happened in those five years.. I've had two bites of the treatment cherry.. a positive margin, ED and salvage radiotherapy.
I found diagnosis not too bad, but it all happened so fast. But, about three months after surgery, I felt flat and quickly slipped into the lowest point of my life. I don't really know what started it but ED played a big part, along with any aftercare evaporating due to covid. At one point I even regretted having surgery. The best thing I did was having some counselling which helped me accept my situation and climb out of the dark hole I'd got into.
Physical recovery: Pretty straightforward, my other half made sure I wasn't overdoing things. It wasn't long before I was jogging around.
Incontinence: I never really had an issue here apart from a little leaking the first couple of nights after TWOC.
ED: This was most difficult for me, my old friend no longer worked despite having nerve sparing surgery (neurosafe on the NHS) all the natural urges were there but nothing downstairs. It took several months for things to start working again and a couple of years before working properly. Nocturnal erections are so strong now they wake me up at night.
Salvage Radiotherapy: I had it in the heat of July 2022 and no HT. I found it pretty easy going despite the odd mishap and some side effects.
Tadalafil: Still have it on prescription, I cut the 20mg tablets and take the 10 on alternate days, I find I get better results than taking a 20 twice a week.
Pump: I stopped using it for the best part of a year but I've started using it again as I noticed slight changes in erections. I prefer my lovehoney purchase, it's still going strong.
For anyone considering surgery.. my advice would be to fully understand the literature, particularly around Incontinence and ED. Your surgeon may or may not gloss over the risks and your chances of regaining continence and erectile function. It's also important to understand what help and support will be available. I think it's also important to manage expectations and be patient.
Things are great now though, I've had a great outcome and my latest PSA is <0.010 undetectable. My other half of only 7 years at diagnosis proposed to me on February 29th 2020. She had been through it all with me and was happy to change my catheter night bag so I could hardly say no. We got married in April 2021. Life is pretty good.
As for PSA testing, I seem to be on 6 monthly but I'm not sure as the last appointments have been cancelled so I usually nudge my urologists PA who gets it on the system.
Bucket list: I'm lucky to still be on a curative pathway but there's a lot of things I want to see and do. We've flown a few times this year already and have one more next month, we're flying on Friday 13th so that's another one off the list.
Cheers all, I'll raise my glass to you all this evening
Kev.
Edited by member 08 Nov 2024 at 18:18
| Reason: Added note