Interview 18

Age at interview: 62

Brief Outline: Was diagnosed with cancer of the oesophagus in 2004. 2-day stay in ICU was planned, following surgery. Transferred to general ward in private hospital. Had to have a second operation and, because of complications, was admitted to ICU in NHS hospital. Spent 18 days in ICU. Had several more operations. In hospital for 5 weeks.

Background: Occupation: retired airline crew. Marital status: married. Number of children: 1. Ethnic background: White British.

She had to clean up after her husband because nurses took so long to attend to him.

So the next day he was a little bit better, and I think it was probably one of [my husband's] low points. He was sitting in the chair, he felt sick, and because they'd been giving him sort of hot liquids, he had diarrhoea. Now that's not conducive really, visiting time, you have a curtain separating you. [Participant's name] is now, a curtain around him because he feels sick and he wants to go to the loo, he's sitting on this commode with dreadful diarrhoea, being sick and there's a woman literally two feet away from him. And it was so embarrassing, and I personally think it was degrading. 

So I called the nurse and asked if we could help because he was sick and I tried to get him cleaned up but I couldn't. We had to wait a long time. a) It wasn't nice for [my husband]. b) It was awful for me. And I'm sure for the people in and around it was absolutely awful. So from that point of view that was very, very distressing. But they did, you know, they did look after him reasonably well, but they just don't have the facilities or the staff to do it.

He remembered waking up in ICU eight days after having a second operation.

They planned an operation to actually remove the oesophagus, because that was the only way to guarantee that you would be clear of cancer. The operation was planned for June of the year 2004. That sort of subsequently came and I went in and had the operation. The operation was very successful. I had two nights in intensive care, which was planned for the operation, and then went back to the ward and the doctors came round and told me everything had gone really well. 

And I was scheduled to have another operation two days later, because with this particular operation, I had a feeding tube in my stomach and my stomach had become quite distended and the prognosis was that I had a blockage to the feeding tube. So the idea was to take me in and have the operation two days later, which they duly did. I went down to the theatre, and everything was going to go, to be fine. And the next thing I remember was eight days later waking up in Intensive Care in another hospital. Apparently I had a blockage in my bowel, which then perforated, and they found something like 5' litres of liquid in my stomach. Which then created the problem of trying to resuscitate me. So in the end they had to take me from the independent hospital back to a National Health hospital with Intensive Care in an emergency ambulance. They had to wait for an ambulance with a ventilator, because I was on a ventilator. And I then spent eight days in Intensive Care to start with. I don't remember much about that. I remember certain things, but very vague. 
 

He vaguely remembered hearing about his prospective daughter-in-law's new job.

All I can remember was, of that morning of going down for the second operation when they were going to have a look at my stomach, was going down and talking to the anaesthetist about this and he said, "Oh we'll put a little..." He said, "You won't be long." He said, "It's only a minor, simple operation." And I don't remember much after that. Once you've had the anaesthetic, that was it. 

The next thing I remember was waking up in Intensive Care on the Sunday morning, which was seven days later. And that was my full memory of the whole thing, waking up. But apparently during that period of time I did actually make movement and things like that. And I actually do remember some of the things that actually happened. One thing in particular I remember quite well was the fact that my son's fianc'e came to see me. And she had, I didn't realise it was her at the time, and she'd just got a new job. And apparently, I remember actually hearing her say, "I've got a new job" and apparently I put my thumb up, so I must have understood something. But I didn't hear, I didn't understand much else. It was when I woke up later that I remember different things.
 

He felt that being in HDU could have prevented mistakes made on the ward because of poor...

Patient: When you come out of Intensive Care, you've been in Intensive Care, you've had a one-to-one basis. I mean they look over, they check on you every half an hour or even more and they're there all the time. When you go to a general ward, they're not there all the time because they're too busy. I think what you need is a ward in between the two, where they can have someone, where they get you back into the, in my case they would have actually got me back to eating correctly, again, which would have helped. I wouldn't have had to have laid in that bed, having eaten the little bit of food they'd given me in the general ward, and been sick, and waited fifteen, twenty minutes for them to come and clean me up. Which wouldn't have happened in an intermediate ward. And it's not good for your recovery. It puts you back because you, you know, you've made great, great strides in Intensive Care, you've come out, you're feeling on top of the world because you've actually recovered and you've actually beaten the system because you are alive and you're ready to go. You go into a general ward and it seems as if they want to kill you off again. And, you know, that is the big problem.

Wife: But I understand that the particular hospital that [my husband] went to, they're going to try and put in a High Dependency unit, which, it will be a better transition from Intensive Care to go to a High Dependency Unit, and then go on to the ward. Because it's just like being cast off in a boat. You have this wonderful one-to-one standard of excellence and you go, and next thing you're literally fending for yourself and you're on your own. And for anyone sort of, you know, finding out about what the operation entails, and what the facilities are going to be for them, I would think it would be quite frightening.
 

He appreciated the doctor's direct approach and he and his wife were given all the information...

I found the information very good. They tried very hard and they explained everything. There was only once, I went to a particular hospital to have ultrasound, and the actual specialist who did it was an actual, he was a specialist in actually the ultrasound. And I can always remember my wife asking him, saying, "Well, if it is cancer, if...". The very words were, "What do you think it is?" He said, "Well, it's cancer." "And what do you do for that?" "Well, we remove the oesophagus." And that was it. And I thought that, at the time, was a bit blunt. They didn't show any feeling for one's, well, one's feelings really. But, on looking back at it, I can see where he was coming from. And it was easier to know quickly than be told in a roundabout way that you might have a cancer. It's best, I think, for someone like myself, to be told straight away I've got something was much easier than thinking I hadn't got anything wrong with me. So I was quite happy with it really, generally speaking.  

The fact that he was quite direct?

Yes.  

And there was no double meaning there or anything?

No, no. But all the specialists I dealt with, the surgeons as well, they explained the operation to me, what they were going to do, what it would entail and everything else, and what could happen. I mean they always say in operations that, yes, you've got a chance you might not pull through. But I mean they have to say that. But everything was fully explained to me, yes, definitely. 

Did you ever feel at any stage that you didn't have enough information or that you would like more information on something that you were either having, like a treatment or the cancer? 

No, at all times I was, they did keep you fully informed. 

He found it helpful visiting ICU when he had a follow-up appointment because much of his time...

After Intensive Care, you said that you had some follow-up appointments, didn't you?  

Yes, I did. 

How often did you have those and what did it all involve?  

Since I came out of Intensive Care, which was in the August, I went back in October and I've been back in April to see them in Intensive Care. They ask me questions about how I feel, how I've reacted to coming out of hospital, general questions like that. And they showed me around the Intensive Care, showed me where I was and everything else, and, yes, it was very interesting. The actual particular National Health hospital I was in Intensive Care does this follow-up, which is, not many hospitals do that at the moment, and I found it very interesting and very helpful and, yes, that was interesting. 

Did you find the diary helpful? 

Yes, very helpful. It's told me a lot of things that I didn't realise and one or two things that my wife and family had forgotten. So, yes, it was interesting, all down in black and white. It's where it's all documented, who came to visit me and this, yes, it's good, it was very interesting, very helpful.

She was very concerned about the nursing care on the ward and about her husband's wound, which...

Because obviously where they, when they take the oesophagus away and they join the stomach to the neck, the join is in the neck. And this join in the neck, this wound was starting to be infected. And I could see it was infected. You don't need to be a rocket scientist to see that. And when I mentioned to the staff in the ward there that I didn't think it was looking very good, it was like, you know, "Well, you know, there's nothing to worry about and we're doing our best. And although it doesn't look very good, we'll see if we can re-dress it soon." Not "now" but "soon". 

And then of course [my husband] was really, really fed up being in there, because I mean it's not exactly, it's not conducive from my point of view for someone to get well when you're in a situation, you're in cramped surroundings, you can hear what the person next to you is saying, it's not very private. Okay, I know that there's problems and we don't have the funding and all that but, okay, I understand that.