I'm new here - what are we doing?

[kevinf]

My view is that until I'm told by a doctor that I have cancer I don't have cancer. So, today, at least, I don't have cancer - but that could easily change tomorrow when I get the results of last week's biopsy.

What won't change so quickly is the need to wee so often. I fear I'm stuck with that little problem for the duration. My question is; is there anything being done to reverse the trend for local authorities to do away with public conveniences all over the place?

It's getting impossible to find one at all in some towns and other places you visit insist you have a 20p piece (nothing else will do) to give them if you need to spend a penny. AND, even if there does happen to be one still working, you can bet the ranch that parking anywhere near it is liable to get you a huge fine! AND as for bus and railway stations ...

So what are we going to do about it? One idea I had recently was inspired by a protest the local homeless people conducted last year in Maidenhead. Basically, they camped out for days on the grass in the area in front of the council offices.

I'll leave it to your imagination what a large group of mature chaps with prostate problems could do on the Town Hall steps to draw public attention to our specific problem!

Incidentally, once we have the dreaded diagnosis, does anyone know if we're entitled to get the key to the disabled toilets you see at airports etc?

[mike72]

It is not a registered disability, but I am sure that it is possible to apply for a card that you are able to present almost anywhere to use facilities. Try the GP or your hospital. The prostate clinic nurses are great and will help all they can. Anyway, if you have an op to remove the prostate, you will have a catheter for about 3 weeks.! Do speak to the nurses, they are there to support you. Good Luck.

[kevinf in reply to mike72]

Thanks Mike, I've now been told I do have a low risk cancer and have been put on active surveillance. I have also discovered that you can simply buy the keys to the disabled loos on Amazon. So I've sent off for one. I still think we need more of the old fashioned public conveniences however.

[ctarleton]

Before treatments or while still on active surveillance, you might learn about doing pelvic floor exercises as physical therapy for urinary retention issues now, or before any future prostate surgical or radiation procedures.

Here's a link to something at Guy's and Saint Thomas'.

guysandstthomas.nhs.uk/reso...

Charles

[kevinf]

Thank you, Charles, very useful. (I followed the link but had to type "exercises" into the search bar to find the right page. I've now printed off the pdf file - excellent).

BTW A few years ago I came across a product called a Travel John. It is a small pouch you can wee into and it gels the urine for easy disposal. I always keep some in my sat-nav bag and never go on a long car journey without one. You can buy them on Amazon. Kevin

[Hidden]

There's a certain town on the Scottish Border (eastern end) where you have to pay to use the public toilet and they give you a ticket. This gives "Pay and Display" a new meaning!

Incidentally, just in case it comes to surgery for you, in addition to finding out about preventing incontinence, also get all the information you can on erectile dysfunction (ED) due to surgery. If this would be a concern for you, you need to know well before. It's easy to get information about incontinence, but people are reluctant to talk about ED and health services consider it a "low clinical priority". After all, men between 40 and 60 only have sex once a week, I'm told. And after 60?

Lots of information about all aspects of Prostate disease at prostatecanceruk.org/

[kevinf in reply to Hidden]

Hi Tim, Thanks for that. Perhaps we should put together a "name and shame" list of towns that charge to use public toilets. AND what about a positive list of hotels, shops and companies (eg MacDonald) who generously allow anyone to pop in - even non-customers?

I take your point about erection issues as well. As soon as you ask a question related to sex it all goes quiet. Even experienced nurses seem to get embarrassed talking about what they coyly refer to as "your bits".

[Scruffybut1 in reply to kevinf]

I don't know I can agree with your comment about nurses and bits. My cancer progression is nurse led. Tuesday (with my wife attending - a nurse) I ran through my textile shrinkage from ADT therapy with nurse and a trainee nurse from Denmark. Their eyes were watering too. It makes them worry for their own men and not just focus on what is before them. Which after 4 years of ADT ain't much. You'll soon stop worrying about finding urinals.

[Scruffybut1 in reply to Scruffybut1]

Bloody system! For textile read testicles.

[kevinf]

Fair comment, Scruffy, I was certainly casting no aspersions on the great work these nurses do for us. I couldn't do their job and that's a fact!

BTW I love the typo, I'm staying well away from the tumble dryer from now on!

[lindacarrington67]

Oh Bless you ,i know exactly what you mean ,shutting the loo's shouldn't be happening ,my husband has diverticular disease so needs the loo alot too ,sometimes he won't go out such a shame .I shall watch this thread incase any petitions get set up xI

[kevinf in reply to lindacarrington67]

Hi Linda, Sorry to hear about your husband. My mother in law has that diverticulitis problem as well. She is totally losing her confidence in going anywhere. You can actually get a key to the disabled toilets on Amazon without being registered disabled - but that doesn't help when you're stuck in a traffic jam on the way to the hospital like I was this morning! Huge urban area, not a wc anywhere.

On the other hand, this summer I did notice a lot of towns in Cornwall that had road signs directing you to vehicle accessible toilets. So maybe there's someone out there listening? Let's hope so..