Ann

Age at interview: 81

Brief Outline:

Ann's bladder problems started around the time she had radiotherapy after a hysterectomy for uterine cancer. In 2011 she was fitted with a suprapubic catheter, which she'd had for about 4 months at the time of interview.

Background:

Ann is a retired doctor. She is widowed and has 3 adult children. Ethnic background / nationality: White British.

More about me...

Ann’s bladder problems started around the time she had radiotherapy after a hysterectomy for uterine cancer. Two years after her hysterectomy, she had secondary cancer and had to have radiotherapy. After this, her bladder problems gradually worsened. She ended up with a series of infections and had difficulty passing urine as well as leaking. In 2011 she had to have 15 courses of antibiotics for bladder infections. She said she often leaked during the day and flooded the bed and night, a difficult and ‘unbearable’ situation. 

 

When Ann was offered a suprapubic catheter, she agreed to have the surgery. There was, however, a lot of waiting for hospital appointments and the first consultant she was referred to seemed busy and disinterested. Fortunately, she was referred to a second consultant who she said ‘was kind and competent and willing to see me.’ 

 

Ann had the operation in October 2011 and, at the time of interview, had had a suprapubic catheter for about 4 months. She was learning how to manage and live with it and, fortunately, had had no infections since the surgery. She said she was still finding it difficult, especially if she had problems such as leaking or flooding the bed at night. Her wound was also still healing because of an ongoing infection. 

 

Like many people, Ann said she knew nothing about catheters until her own experience. Although she was still finding it difficult, she was glad she’d had it fitted. She’d been given helpful information from district nurses, a colleague whose mother-in-law had a suprapubic catheter, and her daughter-in-law who was a nurse for the elderly. She would have liked more information, though, on what to do if the bag comes apart from the catheter and how best to keep it attached. 

 

At the time of interview, Ann had only had one catheter change. She had been anxious beforehand, but it was changed quickly and painlessly and the district nurse was reassuring. Ann was unsure how often she’d need it changed and thought it could be every 2 months. 

 

Ann said she was happy with the healthcare she’d been given once she’d changed to a second consultant, who she described as ‘straightforward and kind’. She also praised the care she’d had from district nurses.

 

Ann had problems with leaking, retention and infections. The second consultant she saw was ‘kind...

My bladder trouble started around the time I had a hysterectomy for uterine cancer. After that, my bladder was a bit iffy but manageable and no real problem. But then two years after my hysterectomy, I had a secondary and I had to have radiotherapy, including a 24 hour implant, during which time I had to lie absolutely still in bed. It was very interesting lying absolutely still in bed. And that meant 24 hours on only hospital sandwiches ‘cos you couldn’t sit up to eat anything or drink anything. It was quite an ordeal.

 

After that the bladder trouble really got increasingly bad. And I ended up getting a whole series of infections, difficulty in both sometimes in passing urine, but difficulty in not dribbling. And last year I had I think it was 15 courses of antibiotics for bladder infections. And I found myself dribbling all day and flooding at night, and it was just unbearable.

 

So when I was offered a catheter I thought oh dear that wouldn’t be at all possible because I was so sore down below because of the urinary problems. But then they explained to me that a suprapubic catheter would be what they would offer. And I thought well that should be possibly okay.

 

So after a lot of waiting around for hospital appointments and having difficulty with a consultant who didn’t want to know, I then got side stepped and sent to another one who was kind and competent and willing to see me, and willing to do the necessary. And I did have time with him to find out what he thought, what good he thought it would do. And he particularly wanted me, if I agreed to have a suprapubic, to have it under general anaesthetic because he wanted to see if he could stretch my shrunken bladder and get it to be more tolerant and hold more volume of fluid.

 

When Ann learnt that she would need a catheter, she could not imagine how it might improve her...

When I was first suggested that I should have a catheter, I thought they were condemning me to death. I couldn’t imagine how I would manage for any sort of a life. So you need to sell a catheter with the thought that it might be a benefit to you, that this might really help to change your life for the better. But I didn’t really get that. But then the first consultant that I saw wasn’t a chap who would make you feel better.

 

Did the second one make you feel better about it?

 

Yes. Totally. Kind and confident, yes.

 

I felt pretty depressed immediately after, because I felt I was tied to this bag and I would never be able to go out again or do anything again. And the district nurse took me, shook me by the shoulders, patted me on the head and said, “No, you’re going to be fine.” So then I felt better.

 

Ann sometimes has accidents with her catheter and drainage bag, including disasters at night when...

From time to time, the catheter parts from the night bag at night. Presumably I’m thrashing around in bed. And then I wake up to a flood in bed. And in fact this very afternoon, just when I was waiting to see you for this interview, I found that the little switch at the bottom of my day bag had moved, probably caught on my skirt or something, and I was dribbling a bit. So I had to go and mop myself down and dry myself off. And, if you’re at home, that’s manageable. If you’re not at home, it’s very difficult. 

 

I think I didn’t realise how difficult managing the bag might be. And I have had several disasters when the catheter has slipped away from the bag’s moorings and there’s been a flood, which is…. what I do now is I anchor it with a bit of micropore tape. And that seems to make it behave a bit better. 

 

I think it would have been helpful to have been told you may find a snag with the catheter slipping out of the moorings for the bag, and especially at night. So I hadn’t realised that it was possible until it happened and I woke in a flood. And having, I’d hoped I’d said goodbye to having flooded beds after the [suprapubic catheter] op, it was really tough to find that.

 

Ann found managing the leg bag difficult at first, especially when it separated from the catheter...

 I didn’t realise how difficult managing the bag might be. And I have had several disasters when the catheter has slipped away from the bag’s moorings and there’s been a flood, which is…. What I do now is I anchor it with a bit of micropore tape. And that seems to make it behave a bit better.

 

And was this while you were at home?

 

Yes. After I’d been into hospital, yes. And I had district nurses coming to call on me afterwards, very kindly, and telling me I was doing very well.

 

Good.

 

I thought, I felt pretty depressed immediately after because I felt I was tied to this bag and I would never be able to go out again or do anything again. And the district nurse took me, shook me by the shoulders, patted me on the head and said, “No, you’re going to be fine.” So then I felt better.

 

Yes. And you started feeling, you know, did you start going out quite soon afterwards or was it something that you were wary of doing at first?

 

Well I was wary, yes. But I live on my own, you have, going out isn’t an option, thank goodness. What you’re anxious about is will the bag show, will it leak and what will people think that you’ve got this funny bulge going down your leg or wherever it is. And it is often a bit difficult to keep it under control.

 

So you have a leg bag,

 

I have a leg bag. Yes.

 

Down here,

 

Sitting here on the inside of my thigh. And if you’re in trousers you have to think about where the taps going to be because you need to be able to get to it. It’s managing it, yes that’s a new skill.

 

Has it become any easier over time or…?

 

Yes, yes.

Ann visits her local surgery 3 times a week to have her dressing changed. She’s tried different...

What I am having a problem with is the wound has still got a bit of infection and I’m having to go up to the treatment room at my surgery three times a week to have the dressing done. And they’ve tried me on this and tried me on that, and I’m now on Inadine dressings. Having gone through antibiotics and honey as dressings, I’m now on Inadine, which seems to be drying it up. But there’s just a bit of inflammation on the tummy wound. 

 

I’ve had antibiotics for my wound infection. And the GP is always wanting to give me more antibiotics for my wound infection, and I am wanting not to have them. So in fact I’ve got some “in case of’s”. But I’m not taking them. 

 

Ann said one consultant had been unpleasant and too busy to help her with her urinary problems....

I saw him [the consultant] a couple of times, and he referred me for various urinary studies, and flow charts and all the things that you get done. But he didn’t appear to be either wanting or feeling that he could offer me any help.

 

You then saw a different consultant who was much better. Can you tell me in terms of healthcare, one was a good consultant and the other one was perhaps not giving you all the information you wanted. Can you tell me the difference between the two?

 

Attitude towards the patient. I think he’s probably an intelligent and quite a whiz kid, the one who spoke to me unpleasantly. And he said, “Well you shouldn’t be coming to me now, it’s the beginning of the academic year and I’ve got a lot of teaching on.” And then he added, “And I am a busy man.”

 

And the other consultant was contacted by a mutual consultant who you will know. And he rang me up and said, “I hear you would like some help. I can see you tomorrow afternoon if you can get into hospital.”

 

Tomorrow afternoon, well that’s very, no waiting around there then?

 

No waiting around there. And was straightforward and kind and said he thought that it was unlikely that he would be able to stretch my bladder to behave itself but he would have a try. And that’s why he wanted me to have a full anaesthetic instead of a spinal, so I did.

 

And how long did you have to wait for that?

 

Oh he said, “I think I can put you in on my next list, which is next month.”

 

Right. This was on the NHS care?

 

NHS care.

Ann sometimes worried that the bag would show. When she went out she made sure she could reach...

Did you start going out quite soon afterwards or was it something that you were wary of doing at first?

 

Well I was wary, yes. But I live on my own, going out isn’t an option, thank goodness. What you’re anxious about is will the bag show? Will it leak? And what will people think that you’ve got this funny bulge going down your leg or wherever it is. And it is often a bit difficult to keep it under control.

 

So you have a leg bag?

 

I have a leg bag. Yes.

 

Down here?

 

Sitting here on the inside of my thigh. And if you’re in trousers you have to think about where the taps going to be, ‘cos you need to be able to get to it. It’s managing it, yes that’s a new skill.

 

Has it become any easier over time?

 

Yes, yes.

 

I tend to go out with an empty bag. No, I don’t cut down on my drinks on the whole. And I’ve forgotten to say that one of my great helps has been my daughter-in-law who’s a nurse for geriatrics. And she’s been wonderful at giving me advice about, “Why don’t you ask for the sleeve for the leg bag?” You can put on a sort of netting sleeve, and that’s nice some days. And then the straps to hold the bag at the top and the bottom. Those are alright. But all sorts of bits you can learn about ‘how to’, and my daughter-in-law, she’s great.

Ann planned her first long trip carefully. She took some plastic sheets to protect the bed in...

And you mentioned going out. Have you travelled much at all since you had the catheter? Long distance?

 

I broke my duck last week. I hadn’t been away since the operation in October. And I’ve got some cousins who I’m very close to, and they came to stay with me. And I said yes I would go and stay with them for two nights, because they’re the sort of people you can, wouldn’t feel embarrassed in talking about things to. So I had two nights with them last week and it was lovely to get away.

 

Were there things that you needed to do, for somebody who’s new, you know, just had a catheter, what considerations are there to think about?

 

There might be a dribble in the bed. So you need to have one of those plastic draw sheets with a sort of soft top that you get in the hospital. I can’t remember what they’re called. And also I took down an under sheet to put under the top sheet just in case, but I didn’t leave a drop so that was fine. But it’s the sort of thing you have to think about.

 

You haven’t been abroad at all or anything like that? Or do you go abroad very much?

 

I’m planning to go to France with the family in the summer. I’m going away with the family in the Easter hols. We’re taking a cottage.