Partner’Basically I stayed in the hospital. I went into work about, it was the Tuesday night when [my partner] went, so early hours of Wednesday morning, I went into work Wednesday morning just to explain the situation, told them I wouldn’t be back until she was better and then I went back to the hospital and it was a case of, I mean the girls are what 17 and 15 and so they’re more or less capable of looking after themselves, so I just stayed at the hospital 24/7, coming home for an hour to get showered, checking the girls were okay. The family was brilliant, was popping in with meals for the girls to make sure they had stuff to eat, coming and feeding me in the hospital as well. But basically it was just literally a beside vigil wasn’t it?

For how long?

Well it was three weeks, till she woke up. So I was there every day apart from an hour every day in the morning, I was there 24 hours a day. Slept in a room upstairs in the hospital when it was available. When it wasn’t available I slept at the bedside in the chair.

I was trying to be strong but there was times when I just I remember one day being with my mum and I was telling her I just felt so frightened, I was really frightened. I just didn’t think she was going to pull through. I just felt I couldn’t see it while I was there what I was going to do. But on the whole I think when she was ill I was just sort of quiet and kept to myself, the others were chatting and that but I just, I couldn’t small talk. I couldn’t indulge sort of thing when she was really ill. It was just, I was just losing myself in my thoughts sort of thing and waiting and hoping.

Patient’The one thing I would say on this subject, looking at it from [my wifes] perspective was you, from memory, got a lot of phone calls and a lot of people wanting to know how I was getting on which was, you know, lovely and it’s nice to know that theres that concern out there. But I think when you were coming home, having spent the day with me in hospital, you were absolutely exhausted and you have sort of, eight or ten messages on the answer machine, one of the things I seem to remember you saying was, you’d get in and all you actually wanted to do is have some supper and have a bath and go to sleep, for example. And if you’re not careful, you spend the whole hour that you’ve got to yourself, picking up the telephone and phoning the relevant people.

So the advice I would give, looking at it from a different angle is almost, don’t rely on the relative to do all the communicating because I think, certainly that was a bit of a pressure.

WifeYeah I would certainly say that you know you, if you’re a married couple and you’ve got two families and friends to communicate with, is just to have one key person on either side of the family, so you’ve got two phone calls rather than twenty phone calls.

And they can tell other people?

WifeAnd they can then spread the word. I mean I suppose the trouble with that is that it would be like Chinese whispers, with the story that you tell at the beginning, might, when it reaches, the last relative might be, you know, completely different. But at least theres communication going through.

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 theres 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.

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, theres nothing to worry about and were doing our best. And although it doesn’t look very good, well 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 theres problems and we don’t have the funding and all that but, okay, I understand that.

What nobody prepared me for was the fact that, we had, the first night in particular that he was home was absolutely awful. And, you know, he was almost, I mean he was sort of seeing things and hearing things and talking complete nonsense at the top of his voice, and being very physical, you know, and sort of lashing out. And no one actually had prepared me for that. And that’s actually quite frightening in the middle of the night, to know how to deal with that. But he was in a very elated mood. I mean it was I’d say for the first week or ten days, and it was described to me by a doctor actually, when I talked to them about it, it’s like, rather like living with somebody who’d had a drink too many. He was very disinhibited, not in a, I don’t mean that in a nasty sense, but he was very exuberant and over-cheerful.

And even if he, you know, met people he didn’t know, that he was sort of terribly sort of jolly. And, you know, it was very magnetic but it wasn’t him. And apparently this is actually, I was told this was very much a feature of head injuries, where perhaps certain inhibitions or restraints are loosened. But it was really very much like living with somebody who’d had a drink too many.

So he [husband] obviously wanted to see me get well as much as possible so he was very, he didn’t talk about things a lot to me, when I was getting, when I was recovering. He kept a lot to himself, but once I got better and he opened up and he started talking about things, I realised that he was also struggling. Struggling in the sense that when he had to go through seeing me in intensive care, covered up with foil, with tubes coming out of my mouth and to the extent that he, you know, he thought he was going to lose me. How was he going to cope with children, mortgage, and you know obviously that must have played on his mind. And up to now he still gets recollection of what I went through and we talk about it and I always say to him that, you know, “Why don’t you look at, when you do think about things like that, why don’t you then look on the other side and say, well look at me now, look where I am now?”

You know, he was worried that will my state of mind come back and you know state of mind surely must have come back now cos were fighting sometimes [laughs]. You know, he has to deal with it in his way and he hasn’t overcome it yet but hes still trying to deal with it all the time.

He still needs time, to me, I’m very, at first I was very shocked to the extent that why should he still be dealing with the fact that, in fact, when we came home first couple of nights he would wake up in a cold sweat having had a dream about what had happened, you know to that extent.

I’ve never had that so everybody’s different, everybody will deal with it in their own way.

I just feel that it would be valuable to families if they were supported a little bit more, or encouraged a little bit more when the patient’s in hospital, to know what will be required of them when they get home. You can observe some of the things that the nurses do, but you don’t know everything. And it would be nice if you were told just how far you could encourage your loved one when they come home. And just really get a few professional skills or, from the nursing staff as to, if you’ve to apply dressings or something like that. That would be a big help. I feel that that would have been a help to me, instead of me having to ask when the district nurse said she wouldn’t be coming any more. That would have been a big help to me.

How were the little boys? Your two sons, did they really know what was going on or…?

Yeah, they both knew. And because [my husband] was like visiting me in hospital so much and he was trying to work during the day, they were more or less living with his parents. And they were home of a weekend, but staying there. And then the oldest one, he would have a few like little tears, and I think he swung it a bit in school, “My Mum’s in hospital and” Well the whole school knew I was in hospital and how ill I was. It was like fame when I came out. And the little one, his teacher said to me, “You wouldn’t know anything was wrong, he was just so sensible.” She said, “He was quieter and he wasn’t as smiley, but he was just really good.” And he always wanted to visit me in hospital but the older one was more, “I want my Mum to come home but I want her to be back to how she was.” He couldn’t really deal with me being ill and he was like, but I would come up the stairs and leave the walking stick up the top of the stairs so I’d know where it was when I’d come to getting it. Well he would come upstairs and move it to like lean on the bed, so I’d go to get out of bed and fall over it. So he was always like trying to look after me, was drying my back and drying my legs when I got out the shower and stuff ’cause I couldn’t really, so he was like trying to be helpful but it did upset him.

Oh, weve become so much closer. We talk in a different way as well, totally different. We talk about things that really happened and what didn’t happen. And I ask her whether or not, you know, I said something to her. Because in my hallucination states I was dreaming or seeing her, but I was seeing Kylie Minogue as well. So, you know, it’s the whole lot is very surreal. But were so much closer with regard to our discussions and our talks and what have you. And as you said earlier, you know, we talk about things that are on her side of it. Because it’s no good saying it’s all you. Because, okay, you’re in a bed for fifteen days, you don’t know what’s going on. You’ve got somebody sitting there. Fortunately as I say she took some notes, because she knew I was going to ask [laughs].

She sits there and shes got to go, phone my mum twice a day. Shes got to go and phone her mum. The kids are coming home. They’re only young, but all of a sudden I’m not there, they’re asking questions. Because they’re at that stage where, you know, if I’m not here then obviously they’re asking the question. My daughter actually asked for a photograph of me and, they both had a photograph to take round to nursery with them. And silly things like that. And that brings over that side, you know. Shes had to go through the same trauma but in a different format. And, you know, we talk about all the bits and bobs that went on.