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Interview 28

Age at interview: 60
Age at diagnosis: 58
Brief Outline: Diagnosed with colorectal cancer 1999. Under went surgery, temporary ileostomy and chemotherapy. Ileostomy was made permanent and a permanent colostomy was added after post-operative complications.

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Lack of effective communication between hospital departments made his experience more difficult.

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Anyway altogether I was in the best part of a fortnight which wasn't a good experience. I mean I, I'm not saying I suffered exactly, I got very frustrated, very fed-up with the whole system. Nothing was happening much you know, I was just being back and forward between one group of uh, one consultant or another and so on. And the person you wanted always seemed to be on holiday or away and stuff like that.

The communication between departments is abysmal. I mean I think they think they're communicating but I know damn fine they're not, because it just didn't happen at times, and it would come and go, and mostly it went. If anybody went on holiday or went off for a couple of days then nothing happened. And unless you shouted and yelled the place down, which I had to do, at the finish, I had to exercise authority as they say and, and jump up and down!

I just think it lacks management skill. I know what that's like I've done it for a living, for donkey's years in a variety of different sort of circumstances, not just the one I'm in now, but, industry and commercially and so on. And I know for a fact that that's the biggest problem we have in our you know, our economy is management. People skills, getting things organised, making it work, cutting out the nonsense.

And when people say "Oh we can't do this, we've got something else to do", have a look at a time and motion, have a look, see what you can do, you know, what are your priorities supposed to be, make your mind up what you're doing. Either you see your case through, in which case disciplines have got to get used to working with each other, and quickly as well you know, you don't need to make an appointment to see the next consultant there you know, you should be able to do that in the space of the, of the time you've got, that sort of thing.

I could go on for hours but I won't obviously.

 

Contradictory instructions added to his frustration in hospital.

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There was at least one sister who I'd have retired the first day I came across her but you know it's nothing, I wasn't gonna be able to do that but the woman hadn't a clue!

I was moved from a four-bedder into a single room because I had, because of the infection that I'd had and they didn't want it be a, a problem with others you see. So it was barrier nursing, in theory.

But they neither had the staff nor the equipment to barrier nurse, they couldn't actually manage and they were so busy on that ward in fact they spent most of their time trying to find places to put people in, in beds they didn't have.

And anyway, the upshot was that I went into this room, they couldn't keep it going at all, but I was told on no account, you know, to keep out of the way, you know I was being barrier nursed. And then three days later to be told I couldn't go home because I wasn't getting enough exercise. Well you can't have it both ways sister! You know I mean if I get exercise it means walking up and down the ward, going out into the corridor you know.

I went home, I told them I was going home on the Friday, whatever they did, so get their act together you know, because I couldn't see any reason, so finally they all agreed, I'd have one more night on their terms, which I agreed to and uh, and I walked about and I drove them all crazy, because I kept getting in their way quite deliberately. I'd stand at the nurse's station' "I'm here, I'm exercising! Mobility!" Until they asked me to go to bed and uh, the next day, well you see I was discharged.

 

He felt that his consultant failed to acknowledge the impact of chemotherapy on stoma patients.

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And the consultant, who was a different man, uh, for the chemotherapy, nice fella, but brilliant understatements that would have dug a hole a mile deep you know. I mean he would say to you for example, "Oh, you might get diarrhoea but you've got a bag, you'll be alright."

Well that's a pretty insensitive thing to say to be honest with you, you know. It's a non-thinking response, just to put it politely.

And as we politely pointed out we already knew that wasn't true you know, it doesn't actually help having a bag, it actually makes it more difficult, but as long as you know that, you're tuned in.

So we always, for example, in those days we'd always have five or six bags ready cut and just sitting there so that during the night I would shout through the wall "Bag's gone!" And the alarm clock went off, you know, you bang on the wall or something and we'd fix it. You know, go back to sleep and that would be it.

It would happen during the day, which is even more uncomfortable because you'd be fully dressed and stuff like that and that of course puts you off going out and a whole load of other things.

 

Recalls the impact of seeing so many sick people at the chemotherapy clinic.

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I mean the people that we've seen in, in the process of going through clinics, particularly the chemotherapy thing, uh, I mean that maybe has been the hardest thing to live through because um, I mean even if I did feel or think that I wasn't well you know, that I was ill and that, I'd even feel sorry for myself on occasion. You'd go into a chemotherapy clinic you know, and all I was going in for was an injection you know. You see people sitting around you, you go for eight, ten, fifteen weeks at a time and gradually they drop off the board, their names don't occur.

Well you've got to be thick not to know that people have died or have deteriorated in front of you, you know. I think that's the hardest thing I think that I've experienced in the last 12 months. And I think that's had to be, we've had to take that into consideration because if you're not careful you can become part of that you know. Again it's not that I wouldn't care or feel for them, I did, still do, particularly for individuals, you've known you know. But uh, that was the hardest thing.

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