4 days post-TWOC and desperate

Hello Chris (Odd Man In ) 

You aren't going to like my reply BUT - you need to contact your team in first thing in the morning - something isn't right and it needs sorting out.

To be honest I think you are under The Christie in Manchester - they have a 24 hour "hotline" on 0161 446 3658 - it's worth calling them to say how you feel and if they can give you some advice.

If you are still suffering the other option is to call 111 and ask for advice tonight. Don't leave it if you are in pain.

Please do let us know how you get on.

Kind regards - Brian.

Brian, thank you. I'll be calling my team early tomorrow.

More than likely, I'll call the Christie Hotline tonight.

Thanks,

Chris

Update to last note. I went to my GP this morning and he ruled out a UTI, tapped my abdomen and suspected retention.

He directed me to A&E who gave me an ultrasound scan, found 800 ml plus of urine, and re-catheterisation seemed the only option.

Kidney function ok, but I wonder when I will finally be catheter-free.

Maybe my Christies team will have a view: I'll ask them tomorrow. I'm shattered now.

Chris

Hello Chris

Thanks for the update - I hope you are feeling a little better.

I did over 10 months with my catheter before the TURP operation. Over the months it became part of me and my routine and I have been known to say "I miss my catheter"  - usually on a Sunday afternoon in the pub when I have to go to the toilet.

I hope you get some answers - have a good night's sleep and hopefully get back to the "new normal".

Do let us know how you get on.

Kind regards - Brian.

Hi Chris.

I have had an in dwelling catheter since Jan 2023 and I have never really ascertained why.It was first inserted during a short hospital stay when I had dialysis due to an infection that laid me low that came  out of the blue.There has never been any suggestion that it should be removed.At my last consultation with the oncology team I did mention that Ihad not  come across in a similar situation only to be told that it was more common than you would think.

Anyway ,a little like Brian it seems to provide me with some benefits such as an uninterrupted nights sleep and no need to be constantly looking for a WC (or quiet spot) when out and about. 
Your current problems sound totally debilitating and needs to be sorted.I can experience some discomfort if I allow the bag to overfill,but nothing like what you are experiencing.aIn the main the bag just fill with barely any realisation that I am urinating,possibly as frequently as you are.

There must be some way to alleviate your issues via your oncology or urology specialists and I sincerely hope that you can get sorted.

Hello Rivelin754583 

Mine was fitted as my Prostate had grown into the urethra restricting flow and backing up filling my bladder and crushing my kidneys.

I had (10 months later) a TURP operation which shaved the bottom of my prostate clearing the urethra and enabling a decent flow.

Yes I do miss a decent night's sleep, but don't miss the catheter changing, bag changing and night bags. My control is now pretty good and on a good day I can go 5 hours between visits to the toilet.

Best wishes - Brian.

Hi Chris,

Just to address your other issues I did go through a few weeks of painful spasms in my penis and anus.These only lasted a matter of minutes but not pleasant at all.

I got relief from a poo and breaking wind rather than pain.Apologies for the graphic detail.

Anyway I went to the GP and between us decided that it could be nerve irritation and I was prescribed Pregabelin which is both a relaxant and anti depressant.

This has worked for me and perhaps worthy of a chat with your GP.

My collection of pills and potions continues to grow as does my appreciation of the NHS and free prescriptions.

All the best

Hi Rivelin754583 I appreciate your reply, and I'm happy to say that less than an hour after being re-catherised, I was acting like a kid as the nurse pushed me briskly round in a wheelchair.

I know that a catheter has several upsides, not least of which is a night's sleep. If this is my 'new normal', I can and I will make it work.

I hope for a decent PSA come September and ongoing benefits from the ADT. My bag and I live in hope.

Kind regards,

Chris

.Hello Chris (Odd Man In ) 

That post made me laugh out loud - I had visions of you in the hospital .

In the 10 months I had my catheter some funny things happened (as well as the not so funny - me and Mrs Millibob marinating in urine when I didn't plug the night bag in properly!!). I have a couple of unprintable stories too!!

Here's a link to a blog I wrote:

 ‘Cancer can’t take my sense of humour’- Brian's story 

I am so pleased all is good - if you need any night bags or short leg bags let me know - I have a box or 2 left.

Kind regards - Brian

Brian, you're a total star - but that's not news

All the best,

Chris