My family used to come in at various times and feed me. The nurses were good. I found out more from the nurses than I did doctors, what was actually going on. All I was told was that I’d been seriously ill. It wasn’t for several days, maybe weeks, before I finally found out what was wrong with me.

I had to have scans. At one point they thought I’d got TB, but I didn’t. I had biopsies done from my lungs and was told I suffered from pneumonia, but a very serious viral form of pneumonia.

I would pick up bits from what my family would say. But I didn’t, I think they didn’t really tell me the full extent of it until just before I came off of Intensive Care. And things, I’d receive cards and letters from people. Because like friends couldn’t visit me, they’d write to me and send me letters, and I started like picking up on that, you know, little things they’d say. And I thought, “I must have been really bad.” And I’d ask my family, and obviously they found it hard to talk about, to say, you know. And perhaps they didn’t understand all what had happened.

And what did the doctors or nurses, you said the nurses told you more than the actual doctors?

They would just tell me like what the drips were for, why they were doing things. I mean I put it down to the nurses.

Partner’Well when she first woke up, like she said, she didn’t know what had happened and we didn’t know whether we should say how ill shed been because whether psychologically it might you know affect her and make her less positive about getting better so we were saying shed been very ill but didn’t go into great detail. Whether that was the right thing to do I’m not sure or whether we should have told her straight away I don’t know but I think one of the nurses actually told her when we weren’t there how ill she had been, and shed been critical and that. So that was really sort of taken out of our hands really wasn’t it?

Patient’But she did that because I was, she felt, and you know you can only go with what the healthcare professionals tell you, she felt I was pushing myself too hard because you know I literally, I can imagine I was a bit of a pain really because things like they were saying were going to sit you out which must be a medical term but it means sitting me in a chair, but they said I could go outside and my impatience to go outside. You know it was probably only a couple of hours but I was harassing this poor nurse.

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 hed 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.

I mean basically it is a complete shock to go from Intensive Care to the general ward. In Intensive Care you get one to one care, you know someones always there. To go straight to the general ward, you’re not really told about, that there is other people, about their cares are there just as much as yours that are needed. Theres, not saying a shortage of nurses, but obviously you have to wait, you have to press the buzzer to get them. You do get frustrated because of what you’ve been used to. You’re not getting people coming to you as quick as before So the that is sort of a big issue, I don’t know how that can be dealt with but as I say the main thing is, I know it probably doesn’t work always, but you should be glad that you’re actually out of Intensive Care because generally that’s a good sign, going on to a general ward that you’re on your way home sometime, now alright it doesn’t always work out like that but generally you should be glad because you’re actually on the road to recovery, to get out of Intensive Care.

And I think that’s what’s vitally important for a patient who’s recovering, to have the positive reassurances. At the same time to have honest feedback, though sometimes the honesty is not what you want to hear. Honesty like, “It’s going to take a long time for you to recover. It will be Christmas 2005 before you can talk about this experience in the past tense. That seemed an eternity away, and I wasn’t strong enough to face that long journey. And people saying to me, and it was a bit of an irritance, and I know they were trying to help me, visitors of other patients or patients who’d gone through the same experience saying, “Rome wasn’t built a day” and, “Step at a time. Step by step.” I can now understand the love and the feeling behind those sentiments, but at the time they seemed to be cold statements, which were not particularly helpful.

Yeah, after they’d done the x-rays and things, I had colitis.

And did they explain what it is?

No. I actually, someone actually brought me a leaflet from another ward and told me to read it because my cousin, shed just got diagnosed with Crohn’s disease. And like whilst I was being poorly at home, everybody thought it was Crohn’s disease, like shed just got diagnosed. But it was colitis obviously, different well they’re similar but different. So like my cousin told me more about it than anybody else and, like I say, somebody brought me a leaflet. That’s about it really, they didn’t really explain anything, do you know what I mean?

What kind of things did you want to know?

What it was. What had happened in the end, because my surgeon, when I was on Ward 11, before on my two weeks on that Ward 11, every day I’d see my surgeon. They’d do the ward rounds, and hed come and say, “Look I don’t want to operate, it’s the last thing I want to do.” And I was like, right fair enough, you don’t want to operate but he didn’t explain nothing about stoma, having a colostomy bag, you know what I mean? And like from the beginning I’d like to have known that, not an hour before my surgery, you know…

The information was there, it was once, if I asked they told me, it wasn’t a problem. It got to a stage where they used to come and ask me because if they used come and check my blood level, this that and the other, they used to say, alright then [participant’s name], what is it? Because I made, I think because I was out of it in a sense where I didn’t have the opportunity to know exactly what was going on, the minute I was able to regain some control of my life, I made sure I knew everything that they were doing, why were they doing this. If there was a new medication I was given, why? Get the doctor to tell me why. I’m not just taking it because you said well I’ve got to take this.

The only problem was with the Crohn’s, I think because it’s such a hard disease to explain, that’s the only thing, the problem that I had. You know, you asked certain questions and they’re still not answers that they can give you so.

Did you look for any information once you got out of the hospital?

Yes, I did, went up and looked on so many different sites. Crohn’s you know, I think, and even I found that it was just as confusing. I think going to look for it was just as confusing as when I was in hospital and they were trying to explain to me what was going on. I did look up sites. My sister, my family looked up sites. I mean it’s weird, once you have symptoms of something, you look it on the Internet or whatever and you compare your symptoms to other things and I think you always go for the worst thing that’s there. So we probably, we thought was it bowel cancer you know, things like this so.

My enquiring mind is at a much simpler level. Which is, “I’ve still got my gall bladder. Does it need to stay in or come out?” And it’s a simple question. And I get conflicting responses from the various specialists. One saying, “If it’s shrunk and it’s no longer operative, well leave it in. If it’s full and flourishing, it’ll come out, when you’re strong enough.” Now I’ve had a scan which tells me that it’s healthy, flourishing. And they say, “Well, you know, it . . .”. One then says, “Well, why does it have to come out?” And the other, another person says, “It has to come out because it could grow another gallstone.”

I said, “Well, you know, how big does a gallstone have to be?” “Well..” “How many years? Because if it’s going to take sixty years for the next gallstone to grow to that size, leave it in.” I need a lot of persuading that it’s in my best interest to take my gall bladder out. And that’s when specialisms overlap or interface theres not necessarily good communications. I mean I have a stent fitted, which is to take out the kink, as you know. But theres debate as to whether that should be left in or taken out. The person who put it in said he could take it out. The surgeon who did the operation says, “Leave it in.” And the stent man said, “Well, I’ve got to defer on this to the one who carried out the operation. That’s her specialism.” But it’s a bit disconcerting when you think you get close to the specialist and there are different views being expressed, professional views on an informed basis.

But at the end of this particular follow-up ICU visit, after that conversation, shake hands, off you go, the sister of the ICU gave me a booklet or a file or a folder, sort of that size. That’s it in fact, which is addressed to me. And this is a day-by-day diary of who the nurses were, who the doctors were that looked after me, what they were treating that day, etc. etc. And it took me about five minutes to read. And I read that on the bus going to the park-and-ride [laughs]. And I thought, “Why on earth was I not given this, if not before I came for my appointment for the follow-up meeting, just five minutes before I went to the follow-up?” Because it was full of stuff that I had no idea. Things, there was one thing where it said, “Your first day, we were concerned because your heart rhythm was very low, very slow, and it was an unusual rhythm called left bundle block.” And I thought, “Blooming heck, what’s that?” And then they started talking about the severe sepsis and so on and so on, these bits and pieces, that I heard nobody talk about. And I thought, “Well, now, the night that my kidneys weren’t working on the ward and this doctor was asking me all these questions”. One of them was, he kept saying, “Are you sure you haven’t got any heart trouble? Are you sure?” To the point where I, when I left there I asked my GP, “Are you certain I haven’t got any heart trouble?’ Because he kept on and on and on about it. Now I know why. Because I had this. And if that had been given to me the next seven days before I could speak to anybody in Intensive Care and get the answers, I wouldn’t have needed that anxiety.