Interview 29

Age at interview: 47

Brief Outline: Had a planned hysterectomy in 2004. Complications led to a second operation. Was admitted to intensive care because of Acute Respiratory Distress Syndrome. Spent 2 weeks in intensive care, 1 day in High Dependence Unit and 1 week in a general ward.

Background: Occupation: social worker. Marital status: married. Number of children: 4. Ethnic background: White British.

She recalled being ill and a vague conversation with medical staff about what was wrong, but wasn...

I then remember being very, very poorly. And I must have been in Intensive Care then, but I don't remember how I got there. I've been told since that, I was told that I was going to Intensive Care and that they was going to put me through a drug-induced coma. But I don't remember being told that. Although I did know something of it, because as I came to sometimes I had this concept that my family had been told that I would have no memory of what was going on. I thought I was going in for daily treatments and that my family had been told to remind me, because I wouldn't remember. So something had been said to me, but I didn't really remember it in any detail. 

They did explain very well then, once I was round properly. The nurses and the doctors came to see me and explained exactly what had happened, what had gone wrong with the original operation, why I'd ended up in Intensive Care, that my lungs had collapsed and that's why I was on a ventilator. 

She couldn't remember her name, her husband's name or details about her children, job and home ...

I remember the nurses saying something about, "Your husband." And I said, "Oh." I indicated, "Oh, he won't come because he doesn't like hospitals." And they said, "He's actually been staying here. He's been here most of the time". And when he did come I couldn't remember his name. And I couldn't remember my own name either. And I can remember saying to my mum, I knew it was my mum, I knew who my mum and dad were and I knew who my husband was, but I didn't know their names. And I can remember asking who I was, and people not really understanding that. And I can remember indicating to my mum, "I don't know what I look like." And she said, "Oh, you look all right, love" thinking I was concerned about how I looked. What I meant was, "I don't actually know what I look like". I had no idea. Because the nurses kept saying to me, "Isn't your hair lovely." And I thought, "I've no idea, because I don't know what colour it is, how long it is".

And because I couldn't move to touch it and because I had no memory of what I looked like. I found that very disconcerting. I didn't know how old I was. I thought I was 58. And I think the reason for that was that when I was having the operation, the anaesthetist and the consultant and everybody who came to see me kept asking my date of birth, which is 1958. So I think that was something that had stuck in my head. I knew my daughter, but I didn't know how old she was and I couldn't remember when her birthday was. I can remember puzzling about it and trying to think about when she was born. And I couldn't recollect when she'd been born. I couldn't remember having her. I couldn't remember my home, what it was like. I didn't know whether I had a job or not. I couldn't really remember anything about who I was. And that was very, very scary.

She was hallucinating that one of the doctors hated her and planned to kill her.

After that I had a lot of hallucinations, with the drugs really. I remember one of the doctors that was on Intensive Care, who I really thought was trying to kill me. I don't think he actually did any treatment on me, but every time I saw him I was terrified. I remember him taking me up on the ceiling and whirling around like a Catherine wheel. We were holding hands like skydivers do and whirling round.

There were bright colours, loud music, he was laughing, and I knew he was going to kill me. And every time I sort of came round when I was in Intensive Care, if he came anywhere near me, I thought he was trying to switch the tubes off that were feeding me or helping me to breathe or whatever. And I couldn't make anybody understand. I couldn't make my family understand. I tried to tell them. I couldn't talk. And I tried to explain to them as best I could.

I had a tracheotomy and so I couldn't speak. And I couldn't move because they'd paralysed my muscles. So it was really difficult to communicate. 

And my husband was there and he kept saying to me, "Don't try and talk." And I sort of tried to make him see that this was really important. And what I was trying to say to him was, "Will you please apologise to this doctor so that he will not kill me." And I thought, "If he goes and apologises, it will be okay." Because I thought I'd said something to him about, "I don't want to be in this hospital. This is not a good hospital". I don't whether I really said that, but I thought I had and that's why he hated me so much.  

She panicked about being weaned off the ventilator in case she couldn't breathe, but medical...

One of the doctors told me that I was coming off the ventilator for an hour or so to see how I'd go, and saw the panic on my face and reassured me that, "You will be able to breathe. You've been breathing since you were a baby. It's something that you know how to do."

And so they did take me off the ventilator for a short time. It was terrifying the first time, but after that it was okay. I then came off for a full day and then came off altogether. And that was very positive because the nurses were so pleased and so happy with me. I felt that I'd done something really clever because it was, you know, "Oh, well, done. You did four hours when we thought you'd only do half an hour" or whatever. And they were very, very supportive and very reassuring.

She found the physiotherapists kind and encouraging, and the exercises made her feel she could do...

Do you remember the physios coming in at all? 

I do, once I'd come round a bit I remember the physios. I liked the physios coming round. They were always very, very kind, very apologetic about having to pummel my chest or whatever. But it was never painful. And they were so encouraging. And they gave me exercises to do, which I did religiously because I felt it was something positive I could do to help myself to get better. So if they said, "Do these breathing exercises every hour" that's what I did. And it's been a good experience with the physios, because I continue to go to physio and see the same physio that I saw in hospital.

She recalled how the nurses went out of their way to help her feel cared for and positive.

The nurses on Intensive Care were absolutely wonderful, very caring. Things that matter to you like they washed my hair, and the day after said, "You won't want your hair washing again because we did it yesterday." So I nodded. And they said, "You do want it washing?" And so I said, "Yes." So the nurse said to me, "Well, do you wash your hair every day?" And I said, "Yes." She said, "Well, if that's important to you and you do that every day at home, that's what we'll do here then." 

And after that my hair was washed every day. And that was such a boost to me because that's what I would normally do. And it made me feel human having my hair washed and feeling clean. I was thoroughly washed every day. Some of the nurses went out of their way. I didn't sleep very well once I'd come out of the coma. I think I was frightened of the hallucinations really, and so I didn't sleep well. And I remember one of the nurses coming on duty and saying, "I've brought this stuff for you." And it was lavender wash stuff. And she said, "It says on it that it's helpful to sleep and it keeps you calm. And I thought about you because you've not slept very well." And I thought that was really kind, that she wasn't just washing me with whatever soap they had, but she'd actually gone out of her way.  

Another of the nurses got some shampoo for me and said, "The stuff that we use in here isn't great. I've brought you some from home." Things like that made me feel they were not just nursing me, but they were becoming friends. And we actually had some good times. Once I'd come round I can remember being put in a side room because I'd developed MRSA. And so they brought me a television and radio in so that I wouldn't be lonely. And they put the radio on, the nurses, while they were doing whatever they were doing in my room, and turned it up really loud and we were all dancing. I mean I was sort of moving about on the bed and they were dancing round me while they were doing their work. And we were playing games like, you know, "Guess who made this record" and whatever. And I was writing my answers down, and I was putting my hand up and saying, "I know, I know" and writing the answers down. And they were shouting them out. And we had a bit of a party that afternoon. Other nurses kept coming in saying, "What's going on in here?" because we were so lively. And I thoroughly enjoyed that afternoon. So there were some positive aspects to being in Intensive Care. I felt that they'd become friends and that we were having fun. And because I was, I knew I was getting better at that point, I felt quite positive. And so that was a very good experience.

She had vague memories of her first time in HDU and found it seemed more crowded the second time...

I remember saying, "I don't really want another operation" and being persuaded that that was the only way. Very jumbled memories after that. I remember not being able to breathe, and oxygen masks, and then having a very, very tight mask put on that I didn't like and that I fought against. I didn't know, but I've found out since, that I was on HDU then. I don't remember HDU from that. I didn't know where I was, I didn't know what ward it was. And I remember fighting quite hard to get this mask off because it felt like it was suffocating me. And one of the nurses said, "If you can keep it on, I'll hold your hand." And she held my hand for several hours I think whilst I had the mask on. 

And how long were you in the Intensive Care Unit? 

I think about a fortnight.  

And then? 

And then I went to HDU, which I didn't remember from the time before. I didn't like HDU at all because it's very, very crowded in there. There's too many beds and you felt like you could reach out and hold hands with the person in the next bed. But luckily I was only there from about 6 in the morning until 6 at teatime, and I was moved back onto the ward that I'd started out on. 

So you were only there for a day?

I was only there for a day, yes.

Nurses expected her to be able to wash herself but became aware of her weakness and needs with time.

That wasn't as good an experience as you think, going back to the ward, because I felt very neglected, having had a nurse at the side of me constantly and really one-to-one treatment and very specialised treatment. The nurses on the ward I think didn't understand or hadn't experienced people who'd been that poorly, weren't used to that on that particular ward. 

So that when I asked to have a wash they were saying, 'Well, there's a sink there.' And I said, 'Yes, but I can't walk, and I haven't had a wash on my own and I don't think I can do it.' And after a couple of days they got used to me and understood that I needed quite a lot of help. But I think at first they expected more of me than I could do. I think the handover was very much medical. 'She's had a trache and that's been taken out and she's on this medication and that'. But not particularly about, 'She can't wash herself. She can't get up and walk.' And so I found that quite difficult. 

And also the first night on the ward I can remember thinking I was going to fall out of the bed, because I was used to having the cot sides on. And the energy it took to actually ring the bell for the nurse, it must have taken me twenty to twenty-five minutes to work up that energy to press the bell. But I was frightened, not to go sleep because I thought, 'If I do, I'll roll out of bed.' And I eventually rang for the nurse and said, 'Could you put the cot sides up because I'm used to that and I feel I might fall out of bed.' After that, the same nurse was on nights every night and came and did that for me automatically. But it just needed me to do that the first night. 

But I did feel that maybe the handover could have been better and they could have, I think it could have been more human, you know, as far as more of what I could and couldn't do and what I'd experienced, rather than just the medical side of things.

She asked to be discharged and was allowed home because her husband was off work and could look...

Well, it was me that asked to be discharged really. And after pleading with the consultant he finally said, well, I could so long as I was looked after twenty-four hours a day. I'd begun to walk a little bit with two people assisting me. And I learnt to eat by myself, which had been quite a feat in itself. So I managed to eat myself. I could just about wash my hands and face when I came home. My husband stopped work and, he hadn't been working anyway because he'd been staying at the hospital when I'd been so poorly. So he just didn't go back to work, and stayed at home with me for about two months I think, and did practically everything for me. And I've just taken my time and learnt to do things again.

She would have liked to know which hospital she was in and why, and to have this information...

There were a lot of questions that I didn't feel were answered. I think the family were told more than I was. And I would like to have been told, even though perhaps I wouldn't have fully understood. I would like the information to have been repeated to me. I remember one of the doctors on Intensive Care, when I was getting better, coming to tell me what had happened and why I was there and what to expect. And then the day after he came and told me exactly the same thing because he said, "Your memory won't be great." And I really appreciated that, because there were things I'd forgotten that he'd said to me. 

But I wish more people had been like that. And I wish they'd talked to me more when they thought I was unconscious or semi-conscious. I still wish they'd talked to me. And, like I say, some of them did. Some of the nurses would say, "This is my name, this is what I'm doing" or whatever. But I would like them to have been really clear about, "This is the hospital you're in. This is what's wrong with you. This is what happened." And to just keep telling me that, because I didn't really understand why I was there. I didn't relate it to the hysterectomy at all. I thought that I'd had the hysterectomy a long time before, and been home, and gone back with something else.  

It didn't occur to me that it was because of that. So I think I would have benefited from knowing that. And also when I got the MRSA I didn't know. They moved me into a room on my own, an isolation room, and I didn't know why. And then they were talking to my family about me having MRSA, and I thought, "Why has no one told me?" It may be that they had and I'd forgotten. And that's why I think it needs to be repeated with people. If you're on medication, you know, and you've got so many drugs in you, you don't always remember what's been said. 

She was glad she visited ICU because this time she saw it as it really is and not as the 'scary'...

Did you go back to the intensive care unit where you'd been?  

I did, yes, which was a bit scary. But it doesn't look anything like I thought it looked when I was in it. There was, when I was in it, I remember when I was first in it thinking that they had big scary furry animals with red eyes. And they were there to frighten you into not smoking. Because I was a heavy smoker before I went into hospital. And I got it into my head that it was my own fault that I was there, because I was a smoker, and that I was being punished. And so there were a lot of frightening things on the ward and there were these things that were put there to scare you. And of course when I went back there was nothing of the sort. And it looked a lot smaller than I expected, because it seemed to be huge when I was in there. But it was quite good to go back and to see it as an ordinary room, if you like, and to see the machines and see they were not as scary as you might think. 

She cried when she read her ICU diary because she realised for the first time just how her...

I had a diary, which I didn't understand properly at first. I knew there was this book that people were writing in, and I wanted to read it but I couldn't really do that at the time. The nurse consultant read it to me on the day I was discharged, and it was the first time I'd cried. I didn't cry while I was in hospital, while I was having the treatment or whatever. But the things that people had written, that my family had written really got to me. And I realised how hard it was for them. Because I was out of it for a lot of the time. And when they were sent for and told that I might not make it, and they spent the whole night with me and watching and waiting for progress reports, that must have been awful for them. 

And that, I wasn't aware of that, I was out of it at that point. And so it sort of made me aware, and also friends who'd come to see me, who'd written little messages in that were, you know, very poignant I think. And it just made me see what it was like for other people, which I don't think I'd considered. You're very self-centred when you're in hospital. Because everything revolves around you and the nurses are all, "Are you okay? How are you?" Your visitors come and ask how you are and they don't talk about themselves. And so you tend to think there's only you that's affected. And it made me see that this had affected everyone, and that upset me quite a bit.  

Thinking about the children and my husband and my mum and dad and all the people who'd been through all this with me, and probably suffered more than I had in some ways. 

She was looking forward to meeting a friend of a friend so they could talk about their...

I think it would be nice to have a support group of people who have had the same experience. Because much as friends and relatives have been supportive, they haven't had that experience and don't know. And I have met a young woman recently through a mutual friend, who's been through the same thing. And we haven't got together yet but we have made a date to get together to have a chat. She actually had her experience five years ago, and what she was saying to me is that she's looked since then for someone else who's been through that experience to talk to. But she would really love a support group. And she's still under a psychiatrist after five years because she's found it so psychologically traumatic. I think it will be helpful for us to get together and to talk through our experiences. And I'm looking forward to that, and I know she is. And it would be nice to find other people. I'm sure there must be lots of them. But this other woman said to me that she's looked on websites and things, and the only person she found in five years was someone in America that she's corresponded with. And I actually only live a few streets away from her. So it was just one of those bizarre coincidences that we met. But I'm looking forward to seeing her and I think it will be helpful to both of us.