Take your equipment with you, your own equipment if you’re on or going on holidayI always make sure that I have a spare, have some spare, well one or two spare catheters and bags and flip flows. And make sure, if you know you’re going to go into hospital, ask, take some of those with you because even the hospital, even if the hospital say that they have a catheter, it may be a different type altogether. And, if they haven’t got what you need, then they try to fit you up with what they think is the nearest, but very often the nearest isn’t near at all.

There have been times when I’ve been in hospital and been fitted up with pads and so on that were obviously not right. They were more like for, you know, for pregnant mums and so on. Much too big and clumsy.

I mean bags, I’ve mentioned those. Taking things to hospital.

That’s very good advice.

I think it is, I think it’s either that or trying to make sure that the hospital has got all it needs. But, of course, there’s so many different types of them. And you can get a catheter from one firm and it can be quite different from the one that you’re used to.

You mentioned that, about once every three months, you go to a continence group, can you tell me a little bit about that?

Yes. Well it’s a mixture, there are men and there are women, mainly men. All in various stages of treatment and some of them much worse than I am because they have lots of other problems as well. I would say it’s a group that maybe ten or twelve go and usually, very often there’s a speaker, or one of the nurses will speak about something. And then a variety of subjects, mainly related, well they are related to urology one way or another. And then there’s always a chance to have a discussion and asking each other questions and we’re encouraged to do that. And I find that’s been very useful to me. I really would praise that very, very, very much. And now it’s been, I don’t know how long it’s been going now but two or three years I think.

You mentioned before we started the interview that you would have found that group really helpful right at the beginning?

Yes.

How has it been really helpful for you?

It has been very helpful, mainly through talking and chatting. And knowing that there’s nurses there and helpers there that are willing to talk and able to talk because they haven’t got, on that particular morning or afternoon, they haven’t got a ward to see to, a ward of patients. They can devote themselves to answering our questions. And of course it’s useful to talk with each other now. You get to know what sort of treatment, what sort of equipment different people are using. Yes, I find that’s been very, very useful. I would certainly urge anybody who’s new, you know, to go along to a meeting like that.

I’ve had a suprapubic, and I didn’t like that. It didn’t seem to be working for me. And I went onto the other one.

The other one. What kind of problems were you having with the suprapubic, because some people have mentioned that they did have problems with it?

Well there again I’m rather vague because I don’t remember, but I have a feeling that it was leaking. And that of course I found is one of the main problems with most of the catheters. No matter how careful you are, there’s a certain amount of leakage, and that can be rather unpleasant and. But I have to wear pads. I have to wear a pad as well as the catheter.

What’s been the most difficult thing to accept? Having the catheter, knowing that you’ve got it permanently or the other health problems to consider at the same time as the catheter?

Well I think the amount of time that it takes, you know to do things, and it takes longer to go to the toilet. It takes longer to get up in the morning to get dressed. And then on the day of the changeover, I change them, not a catheter but the flip flow and the bag, I change those every week. And the whole business of going through all the routine, so many times a day. And I like to be an organised person. I like to know where my time is going and I rather regret having to spend so much time dealing with catheters. But, as I’ve already said it, you get used to it, just be patient and get used to it.

Do you have to change your routine a little bit if you’re going out anywhere?

Oh yes. Yes, and this is another thing that is quite, a bit of concern about this. I can go out, and usually I can go to the shop and back again but no problem. But the trouble is when you go on holiday and you’re on a coach journey, that can be difficult.

So, well I just try to watch what I’m doing and don’t have much of an intake of fluid but And it’s the same with going to the cinema, this is one of the places where I’ve noticed it most. Whether it’s the seats or whether it’s the atmosphere, but at the cinema, when it’s getting towards the end of the film, I’m beginning to wonder if I can last out.

Is it that the bag’s full by then, or you’re uncomfortable?

No, when I go to the cinema I don’t use a bag. I have begun to wonder if I ought to, or could do. But, during the day, I prefer just to have the flip-flow that I can relieve at the urinal.

What kind of long journeys do you make that you then have to think about the catheter?

Well not many, I went on a cruise last year and I’m going on a cruise this year. And it’s always a long journey down to the port. But I go with Saga, you’ll know Saga no doubt.

I do.

I go with Saga and I’m very pleased with them. And they pick me up from home, and if we’re going down to Dover or Southampton, they’ll have a stop on the way, which is enough.

So you then can empty the bag when you stop?

Yes.

Or are you okay for longer?

I’m okay for, well, if we stop then I do whatever’s necessary. Sometimes it will be emptying the bag; sometimes it will just be relieving myself. If I know for certain that he’s going to stop within two hours, then that’s alright.

Yes. And on the cruise, on the cruise ships themselves, everything’s, is it comfortable?

Yes. I don’t get any special treatment or anything out of the way, but I know that it’s there if needed. And on the cruise ship I can carry on as I do at home. On the cruise ship, I don’t wear a bag during the day but I do have the bag, the night bag at night. So that’s just the same as what it normally is.

My routine is that, during the day, as now, I just have the catheter and the flip flow. But, when I go to bed, I put on a night bag and that I find is very, very good because it enables me to go right through the night, which is so important.

Yes. And, in terms of leaking, leakages, are they more likely to happen at night or it can be any time of the day?

No, they’re less likely to happen at night. I don’t know whether it’s something to do with being in the horizontal and vertical position, but no it’s, yes a certain amount of leakage but it’s mainly during the day.

Yes. And do you have to change your routine a little bit if you’re going out anywhere?

Yes. And this is another thing that is quite, a bit of concern about this. I can go out, and usually I can go to the shop and back again but no problem. But the trouble is when you go on holiday and you’re on a coach journey, that can be difficult.

So, well I just try to watch what I’m doing and don’t have much of an intake of fluid but And it’s the same with going to the cinema. This is one of the places where I’ve noticed it most. Whether it’s the seats or whether it’s the atmosphere, but at the cinema, when it’s getting towards the end of the film, I’m beginning to wonder if I can last out [laughs].

Yes. So is it that the bag’s full by then or you’re uncomfortable?

No, when I go to the cinema I don’t use a bag. I have begun to wonder if I ought to, or could do. But during the day I prefer just to have the flip-flow that I can relieve at the urinal.

I’m sure I’ve had a lot of advice from different people. And, unfortunately, some of them contradict each other. But I do try to drink quite a lot. I might drink more coffee than I should do, but nevertheless it’s mainly tea that I drink. But I do like coffee at certain times. I don’t drink beer or spirits. I’m more or less teetotal, apart from weddings and funerals. Some people have said that, I can’t think what it is now, something that’s quite good for bladders, but I can’t remember what it is.

Could it be cranberry juice?

Yes.

Do you drink anything like cranberry juice? Or some people have said that they drink water with lemon juice squeezed into it
No, I don’t do anything like that.

What would you say is your usual routine, day to day, in terms of drinking? So a typical day, what kind of fluids do you drink during the day?

Well I get up usually between 7 and half past. I have my breakfast before I get dressed, before I change catheters, in my dressing gown. I make a mug of tea. I have some, I have a dish of cereal and I have a slice of wholemeal bread with marmalade. That’s my daily routine breakfast, except every now and again I have a decent porridge.

Mid morning, I’ll have a coffee, well in the, at breakfast time I may have two mugs of tea, depending on how I feel. Usually only one but sometimes I have two. Mid morning, I’ll have a coffee. Lunchtime, I’ll have a coffee after my lunch.

Just recently I’ve started having a drink of tea in the middle of the afternoon, which I haven’t done before and I don’t know if that’s another bad habit I’m getting into. But I have, I mean I’ve been having that recently. And then at tea time I have tea, a mug of tea and then in the evening I have Horlicks. I have a mug of Horlicks. And, in between, I may have a fruit juice or lemon juice or something like that. A drink of squash.

Take your equipment with you, your own equipment if you’re on or going on holidayI always make sure that I have a spare, well one or two spare catheters and bags and flip-flows.

And make sure, if you’re going to go into hospital, ask, take some of those with you because even the hospital, even if the hospital say that they have a catheter, it may be a different type altogether. And, if they haven’t got what you need, then they try to fit you up with what they think is the nearest, but very often the nearest isn’t near at all.

And there have been times when I’ve been in hospital and been fitted up with pads and so on that were obviously not right. They were more like for, you know for pregnant mums and so on. Much too big and clumsy.

I’ve had a suprapubic, and I didn’t like that. It didn’t seem to be working for me. And I went onto the other one.

The other one. What kind of problems were you having with the suprapubic, because some people have mentioned that they did have problems with it?

Well there again I’m rather vague because I don’t remember, but I have a feeling that it was leaking. And that of course I found is one of the main problems with most of the catheters. No matter how careful you are, there’s a certain amount of leakage, and that can be rather unpleasant and. But I have to wear pads, I have to wear a pad as well as the
As the catheter?

As the catheter.

It [catheter] isn’t as bad as what it appears to be. Because it does appear to be a big intrusion on your life. And really it isn’t. It might be a bit frustrating and you may have to take one or two simple precautions, but you get used to it. You know, there’s no doubt about it, you will get used to it.

And don’t be afraid of asking people. Four or five or six, eight years ago, I would have been almost afraid of talking to anybody about incontinence and catheters, but I wouldn’t now.

I’ve had a suprapubic and I didn’t like that. It didn’t seem to be working for me. And I went onto the other one [urethral].

The other one. What kind of problems were you having with the suprapubic, because some people have mentioned that they did have problems with it?

Well there again I’m rather vague because I don’t remember, but I have a feeling that it was leaking. And that of course I found is one of the main problems with most of the catheters. No matter how careful you are, there’s a certain amount of leakage, and that can be rather unpleasant and. But I have to wear pads, I have to wear a pad as well as the catheter. My routine is that, during the day, as now, I just have the catheter and the flip flow. But, when I go to bed, I put on a night bag and that I find is very, very good because it enables me to go right through the night, which is so important.

Yes. And, in terms of leakages, are they more likely to happen at night or it can be any time of the day?

No, they’re less likely to happen at night. I don’t know whether it’s something to do with being in the horizontal and vertical position, but no it’s, yes a certain amount of leakage but it’s mainly during the day.

What kind of problems have you had with the leaking? Is it quite often or has it been less over the years or any difference or changes?

No, there’s a, it isn’t a big leakage really. You know, and I have found though the pads very good. They relieve me of quite a bit of worry and concern because they are quite good. But it’s nearly always a small leak there.

Yes. And do you get the pads from the doctor’s surgery or does the pharmacist come and bring them for you?

I go and collect them from the pharmacy.