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Appointment with continence nurse finally came through

It’s mid-March! Just as well I wasn’t really desperate (no pun intended) to see her then, wasn’t it?

As I’m very anxious about it, I don’t know whether I’m relieved or put out it’s so far away. It’s a long time to have a dreaded thing hanging over you, isn’t it? In some ways, it would be better if it was out of the way this side of Christmas, and I didn’t have four months still to dwell on it.

Reassured, though, that they can’t think it’s terribly urgent (again, no pun intended).

Sometime between now and then, I’ve got to measure intake and outflow on any three days - not necessarily consecutive. That shouldn’t be too demanding - any three days in four months - but I just know I’ll end up putting it off 'til the last minute.

Tina

x

I’m a last minute person too Tina.

March!! They are having a laugh-or taking the pee

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Ha,

Yeah, funny really! There’s me worrying it might come through and be tomorrow, or next week.

Should’ve known better really, shouldn’t I? FOUR MONTHS!

I suppose I can’t complain I didn’t get enough notice.

T.

x

Hi

I was anxious about my continence appt 2 weeks ago but it was really nothing bad. She asked me what was happening down there, about what I drink, asked my weight ( ugh ) and height, did a quick ultra scan to see if my bladder was holding onto anything, gave me a load of leaflets to read, told me to cut down on cups of tea and switch to decaff. Also do pelvic floor exercises etc. She’s made me another appt. in January.

Got loads of other appts to get in b4 xmas though. Eye clinic and Neuro early Dec. Mammogram and smear test in next couple of weeks.

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Hi Fudgey,

Thanks, I think you replied the first time I mentioned this, and pretty much everyone in that thread reassured me it was nothing to worry about, and that I probably wouldn’t be subjected to a urodynamics test on a first visit, and certainly not sent home with a catheter.

I’m just a natural born worrier, I suppose. I was worried the appointment might be soon, but I’m also worried I’m going to have it looming for the next four months! I’m also worried even about having to measure in the privacy of my own home. The problem being hesistancy and possible retention, rather than the other, anything odd or unnatural about the circumstances of going tend to make it worse. Peeing into a measuring jug is certainly not natural, so I expect it to affect “performance”, so-to-speak.

I wonder if I could get a jug that would actually sit IN the loo, so that I could use the loo as normal, and try to pretend it wasn’t there? I think that if I consciously try to go into a jug, the muscles will tense up straight away, and tell me I shouldn’t be trying to go here, because it’s “not the right thing”.

Tina

x

Perhaps it might be of benefit to practice with a jug now so that you become used to it, ready for the time you do have to do it.

MS throws us some lovely little curve balls

Best wishes Jan x

I’m still waiting for my appointment. They don’t seem to be in a hurry. Nice to hear that it shouldn’t be too bad because I’ve been kind of dreading it.

Well, I did manage to produce stool samples for bowel-cancer screening a couple of years ago, which was much yuckier and fiddlier, so I suppose, if I can do that…

I don’t even have a measuring jug at the moment - or certainly not one I’m willing to consign to that, so first step will be: order jug!

Tina

x

I sympathise, Fiona. When it came through, I was almost tempted to cancel, as things aren’t that bad, to be honest, and I think I’m more distressed about the appointment than the “problem” itself, which is ridiculous!

But I cancelled the last thing that came through for me, which was physio - which, thanks to a spot of poor communication (neuro’s, not mine, I don’t think…) I hadn’t realised was being organised for me, and didn’t want!

I notice they’ve now inserted a crafty little clause into the letters, that wasn’t there before, saying that if you miss an appointment without informing them (that bit’s always been there) OR cancel two, you’ll be discharged, in line with their policy!

I think that’s absolutely ridiculous. Cancelling two appointments isn’t excessive (and it doesn’t say in how long - do they mean the rest of your life?) A person with a progressive, incurable illness cancelling twice doesn’t indicate they’re a time-waster, who should be removed from the books.

So I’ve already cancelled the physio appointment - only one chance left under the new “Two strikes and you’re out!” policy. Looks like they are now trying to frighten me into attending appointments that weren’t discussed with me, and I didn’t agree to!

Tina

x

If peeing into a jug will really be an issue for you Tina, you could go on amazon and take a look at ‘cardboard toilet liners’, similar to what hospital use. That way you can relax, then just transfer the urine to a measuring jug.

xx

Great idea! I hadn’t looked yet, but Amazon being what it is, I had already wondered if there wasn’t anything expressly for the purpose! I think it’s much easier - for a woman, especially - to just go on the toilet than into some kind of dedicated receptacle. So if I could just pop something into the toilet that I would be able to ignore (almost), it would be lots easier.

Will have a browse, and see if they’ve got anything like that. Obviously, if I’ve only got to measure three days - plus allow a few spare for practice - I wouldn’t want to buy in hospital quantities. But it might be the answer. Obviously, it’s stupid doing the measuring, if I can’t get get a true reading, because I can’t relax enough to go properly! So I really need to find a technique that won’t be putting me off.

Tina

x

Tina the paragraph on your appointment letters about cancelling two appointments meaning you’re discharged is not there to frighten you into not attending any future appointments. It is a guideline they have had to bring into use to help deal with the already overloaded clinic waiting lists. It’s standard on All appointment letters, no matter what clinic/department and regardless of who you are. It’s not personal to you, everyone gets it on their letters. Unfortunately there are a lot of people out there that do miss appointments by not turning up or constantly change dates or times and they have had to draw a line with this. I think them giving everyone two opportunities to attend is fair, in light of how high the numbers on some of the waiting lists. Bear in mind all referrals are prioritised aswell so depending on how urgent the referral is would an does result in you being seen sooner, if required. From my own experience, I’ve had to change dates due to whatever reason. I’ve always found that if i contact them in plenty of time they are helpful and accommodating. Worst case and they do take you off the waiting list. Your gp can re-refer you and you’ll go back on their lists.

hi tina

you’ll walk it!

once you have the jug or toilet liner.

it’s actually an enlightening thing to do.

i know it makes perfect sense that the more you drink, the more you pee but actually seeing it for yourself is really helpful.

i was drinking lots of water and the fact that one time i actually peed a litre made the nurse tell me to drink less!

this was because i risked stretching my bladder!!!

look at it as a learning experience because you seem the type who would be interested.

happy peeing!

carole x