That was not in the plan.

Oh man I remember you trying to decide what to do and I voted for bladder out back then. You’ve been through all this and it’s not worked :-((
I so admire you , always have , and feel so awful what you’ve been through though I’m probably yet to experience it myself. Try and stay strong Chris. Our love and wishes to you

Edited by member 08 Mar 2018 at 08:42  | Reason: Not specified

Best wishes, Arthur

Well I had a couple of days in The Christie this week and I have got to say it is a superb hospitial.

I had cystoscopy and urethrotomy under general anesthesia, the surgeon has cut into the stricture so a little nervous of how that will affect my already iffy incontinence. They filled the bladder to ascertain it's capacity and sadly it it now down to 120ml. The bladder is badly scarred by the radiotherapy and there is little chance of the bladder recovering. I see the surgeon in a couple of weeks to discuss options but it comes down to Suprapubic catheter for life or bladder removal and urostomy bag, I am leaning towards SPC but do wonder how I might cope as I get older.

I now have two catheters again for two weeks, on this occasion the SPC is trouble and pain free, the urethral catheter is very uncomfortable mostly in the perineum area, the instilagel soon relieves the tip of penis stinging. I had forgotten how in uncomfortable bypassing could be.

I am going to have another 20 sessions of oxygen treatment, not over optimistic of it working, but there does not seem to be any effective treatment for radiation damage, only management of the side effects.

For my moaning subject I will pick hospital gowns, mine only had a tie trap on one side and I got fed up of seeing men's bare backsides hanging out of untied gowns.

Thanks Chris

So sorry to read your latest update Chris.

I'm sure you'll deal with it all in your usual phlegmatic manner.

Good luck and Best Wishes

I thought the NHS had done loads of work around respect and dignity? Apparently, the newsletter about patient bums hasn’t made it as far as the Christie :-/

A terrible choice for you to make but I think you have a real trust and confidence in your surgeon who will guide you in the right direction. Did you ask though, if you choose SPC now does that completely rule out bladder removal in the mid to far future?

Lyn

I think it is the older male patients who need the newsletter, preferably pinned to the back of their gowns. The staff are very good at the modesty and privacy procedures,saying "knock knock" and always asking before entering closed curtains etc and very quick to cover up the elderly gentleman's exposed bits when thet get out of bed or come out of the bathrooms etc.

As regards the SPC if you mean am I aware a long term catheter can cause bladder cancer then yes I am. Having a urostomy or a SPC still means messing around draining bags etc. My new normal is having a suprapubic and I can cope with it. Going through another major op and with my luck having possible complications isn't a risk I want to take at the moment. It is a pity there is not a reasonably priced decent incontinence system that does not involve clamps or gluing things to my penis.

Sandra not sure about phlegmatic, I have my ups and downs and some very dark days. Just coming up to the fourth anniversary of my surgery and it take its toll. In my bay at hospitial there were 4 beds the other three guys were all in a worse situation than me.

When I started my journey nearly four and a half years ago there was talk of a vaccine for PCa, within 5 years, will it happen this year ?

Thanks Chris

Sorry no, I wasn't thinking about bladder cancer down the line - I was just thinking that if you choose SPC now and then can't manage it when you are older, would you be able to have the bladder removed? In other words, you can't choose option B and then revert to option A but could you go with option A and still have option B if you needed it?

Hi Chris,

Blimey. What to say? All along, you have been just amazing, stoic, strong, taking each new hurdle in your stride. Much respect.

As for people being worse off than you? There will always be people worse off and better off. Mind you I think there are probably fewer people in the latter category? Anyway, it does not detract from your situation.

Make your best choice, and go for it. Your luck has to change some time!

atb to you and D.

dave

Thank you for sharing your story over this time as the information and advice you share has been and will continue to be appreciated by many on this site.

Very best wishes to you.

Kevan

Three years mid June for me and it’s far from over. I guess it will only get worse. I can’t think of many men who have had it tougher than you Chris. You’ve been amazing and strong