I just have to make sure that I don’t drink too much before going out, and that I come to the meeting with an empty leg bag and then I’m okay.

Yes. And in terms of the amount of fluid that you drink every day, were you given much advice on that. Or again,

Not really. I mean I don’t drink enough. I know I don’t. I should drink much more. And that’s a constant worry really. But it’s really, most of my symptoms are due to the fact that I have enough, a high enough fluid intake. And I should, I know I should.

What do you normally drink? Water or juice.

Water and orange juice I drink mostly. A little bit of coffee and a little bit of tea. But mostly water and orange juice.

When I was first in hospital, they used to make me drink cranberry juice all the time cos they said it had some sort of content which made your bladder, the environment of your bladder much more unlikely to be colonised by any bacterial infection. And when I look, I couldn’t, endless glasses of cranberry juice, which was very fattening because it was mostly made of sugar. I looked at the contents on the back of the packet, the carton, and it had very little cranberry in it at all. So I absolutely refused to have that anymore. Cos I could see I was going to get so fat. There I was sitting in a wheelchair unable to move, drinking what was really just syrup, so I don’t advocate that. And it made no difference to my bladder at all.

I mean if cranberry, if whatever it is, whatever component of cranberry is helpful, then I think it needs to be taken in tablet form, which you can actually, I think you can buy.

I haven’t tried to do that and I should probably, cos it might be better than being on Nitrofurantoin, I don’t know. But I don’t, I really don’t believe that cranberry juice is the answer. And that’s fine, that’s my first bit of advice.

And you drink water more than anything?

Water. Yes.

If I really had my wish, if I won a wish I would wish that I didn’t have to have a leg bag anymore. And that there’d be some magical solution to the urinary tract problem which didn’t involve a leg bag and didn’t involve speeding myself onto the loo every half an hour. And didn’t involve anything like that. Some magical solution, but I can’t imagine what it would be.

But the leg bag is a nuisance, it is a nuisance and it’s not nice to have a great reservoir of urine attached to your leg. The only time it’s an advantage is if you’re driving up the motorway and there’s a traffic jam and your leg bag fills up. You can empty it into a bottle and you don’t have to worry, whereas everybody else in the car is fidgeting around cos they need to go to the loo and they can’t. So that is the one time when you just think, Well okay, that’s a plus point There aren’t many, but that’s one of them.

You’ve mentioned some interesting things that, you know, if it could, for example if someone was going to design a new catheter, what kinds of things would, improvements would people like to see. So a leg bag is something that you would, some other solution other than a leg bag?

Yes. I would prefer, if I could have had some sort of surgical intervention which would have meant I could have catheterised myself through my abdominal wall. And there was no danger of having a bladder leak if you left it perhaps half an hour too long, like if you’re an ordinary able bodied person you might want to spend a penny but you don’t have to spend a penny absolutely instantly firstly. If you could have had that sort of situation, and then at night I didn’t have to wake up every hour to empty my bladder otherwise I would have an accident, then that would be a perfect solution. I wouldn’t mind if at night I just had to go onto drainage to keep my bladder empty so that I didn’t have a flood. But it just, there just doesn’t seem to be a way of doing that.

I really would much rather not have to take any medication. I mean, you know when you say this, is there anything that you would like? it’s like watching the horizon and seeing the sun rise. The thought that I could actually just not have to think about my bladder ever again, not have to have an indwelling catheter, not have to be on antibiotics, but deal with it in a completely reliable way. It would be absolutely like a new dawn to me. It really would.

I don’t usually travel any vast distance on my own because I always go with my husband. I do drive a lot and all that sort of thing. And I always have a bottle in the car which I empty my leg bag into. And I never go into any sort of situation where I don’t know whether I’ll be able to get to the loo without making sure that I’ve got an empty leg bag before I start.

And I think you just have to be very brazen sometimes and say, Look I must go and spend a penny And there have been times when I’ve had to go outside and empty my leg bag onto the grass. And actually mostly people might be a bit horrified but mostly they’re very sympathetic and kind. So you just have to be a bit thick skinned sometimes.

But I have to say it’s never really, I’ve never had a major terrible situation really. it’s quite tricky in places, like going to London. You can’t just sort of stop on the side of the road and empty your leg bag into a drain without people looking rather surprised. But you might have to do that, you know, you might just have to grit your teeth and do it.

Well my catheter, travelling by air is quite difficult because I can’t move out of there. I mean I have to go into the aeroplane in the little chair that they provide. I have to be lifted into my seat, and during the flight I can’t get out, that’s it. I can’t go to the loo [toilet] in the aeroplane. I mean I’ve never even attempted to go to the loo. They don’t have loos which are at all accessible for somebody who is physically disabled.

Although the girl I was talking about, who is a sportswoman, a paralympian, she does manage. She goes on her own and she manages and she gets to the loo somehow. I don’t know quite what they do, but she can. She’s so agile at moving about and doing transfers that she does manage.

But when I go on an aeroplane I have to have my husband with me, and we have this secret manoeuvre where I empty the contents of my leg bag into a bottle which he has in a bag and he takes it off to the loo and empties it. And people look rather quizzically and wonder what on earth’s going on. But that’s the only way I can survive a long flight.

At that stage and throughout the years, were you given all the information that you would have liked? Was there much about the catheter?

Well they gave me this ghastly pack when I left hospital, which I’ve never read because it was so depressing I couldn’t read it. And the nurse who, each of us was designated one nurse to look after us as a special, I mean each nurse would have several patients, but you as a patient had one nurse to go to. And I had the most wonderful nurse who was actually the nurse practitioner on the unit. And she had a particular interest in urinary issues and bladder function and so on. And she was really the most marvellous girl and I could have asked her absolutely anything and nothing would have been out of her range. So that was very good. But I still felt really that a lot of the decisions were left up to me.

I do actually even now feel slightly, I do feel slightly I’m in uncharted waters. Because with a lot of the care I’ve had, it’s been initiated by me which, you know, I don’t know that I’m really qualified to be taking such a responsibility. I fall into the generation, I don’t want to be consulted about the decision. My choice is who to go and see, and after that I’d rather hand them all the responsibility for what to do with my particular medical care. I don’t want to be involved because I don’t have the experience. And I’m not, I mean I’m quite adept at using the internet, but I’m not somebody who will go and look up bladder dysfunction on the internet to find out how to manage my [condition], I just don’t do that. I would rather go and see a specialist who’s been looking after people with my kind of problems for several decades and go along with whatever he or she suggests. I don’t understand why the general public don’t follow that line.

I can’t really remember the exact process of events but I did, during my time there, have a suprapubic catheter put in. And that wasn’t, I don’t think that was very long after I came out of the intensive care unit into the Spinal Unit. And I think it was because it was obviously going to be a more or less permanent feature, although they did try to get me into the habit of doing intermittent catheterisation, self-catheterisation. But I couldn’t do it at all.

I mean I thought, it was actually quite revealing with a real lack of insight into the future life of somebody with quite a high level of paraplegia. Because I couldn’t tilt my pelvis so I couldn’t possibly have catheterised myself sitting in a wheelchair. So it would have meant that, every time I needed to empty my bladder, I would have had to have gone to somewhere where I could transfer onto a flat surface. It was completely impractical.

In the end It was my decision to do what I have done, which is go onto the free drainage. But the suprapubic catheter I’m really just, I really had to, I kept on being taken, starved and then taken to theatre. And then they wouldn’t have time on the operating list, you know that sort of thing. So I waited for ages to have it done. And it was an advance, even then it was an improvement, even then actually. When I was in hospital even, it was better.

Right, yes. What kind of improvements did you notice almost straightaway?

There was no longer the problem of sitting on the catheter and being uncomfortable, even though you didn’t know what it was that was hurting you, being uncomfortable. And the business at night of rolling on your catheter and things, that was not an issue any more once I had the suprapubic. Or pulling it without realising. Cos without the sensation, it’s very easy to traumatise the surroundings of the catheter, can be quite traumatised without you being aware of it. That’s the trouble.

The next idea was that I would have intermittent flow on my [catheter], and so I had a flip flow valve on the end of my catheter, and even that was very difficult. And because by then I’d probably, although actually the capacity of my bladder seemingly, because I went and had a urodynamics profile done [a study that assesses how the bladder and urethra are storing and releasing urine]. And my capacity seemed to be quite good. And they actually remarked on that I had quite a good sized bladder still.

But there was this terrible fear of reflux into the kidneys and everything. And also, because I had a suprapubic catheter, if my bladder filled too much, it just emptied. And then I had this problem of incontinence. And that was going to become an absolute nightmare too. Anyway, I battled on with that process until I left hospital.

And when I left hospital it was obvious that it was never going to be really a functional and reasonable way of conducting my life, because again I was going to be so aware all the time about my bladder. Even if I wore a leg bag and just emptied the flip flow valve, from time to time it was just going to dominate my life too much. And I wanted to get back to normal.

So I decided really, and I felt an awful failure doing it, just go on free drainage. And that’s what I’ve done ever since. I just have a leg bag on, and I allow the catheter to drain continuously into the leg bag.

And at night I put it onto a larger bag which hangs on the side of the bed. And it’s really something which is, it takes a lot of coming to terms with actually. it’s a nuisance having a leg bag. it’s difficult with clothes, but the bladder and bladder dysfunction is something which is a constant problem.