Interview 09

Age at interview: 65

Age at diagnosis: 64

Brief Outline: Diagnosed with colorectal cancer 2000. Under went surgery, temporary colostomy and chemotherapy. Colostomy irreversible after 15 months.

Describes being wrongly told he had only a short time to live.

So this guy came in and he said "I'm ever so sorry er the cancer looks as if it's er spread," and he says "I think you've got a spread. It can be debris, it can be lesions, it can be scar tissue but I don't think so."

And he just went out, left us in the air, just like that.

I couldn't hear any more. I was just like gob-smacked and just in a very bad state. And as far as we were concerned there was another surgeon, part of his team that was sitting on a chair next to me and he was sitting there with his mouth wide open because I could see that he couldn't understand how a guy could relate like this.

And my partner was with me, she was, had her mouth open as well. Well someone must have, I think this guy who was sitting next to my partner walked out the room and sent him back, I think he must've sent him back.

He came back and he wasn't much better when he came back and he says "If you need a second opinion I don't mind," and he said "but I'm around the whole of Christmas and if you want to see me you can." And he said that "I think that you ought to go off and enjoy yourself as much as you can." (laughs)
 

He preferred to avoid sex until his stoma could be reversed.

Well there's no way that I've been near her since the operation because I feel, it's not dirty, but it's just in the way.

I suppose if I was going to have this for the rest of my life then I'd have to think again but I didn't think it was fair. That's the way I've put it.

She's said nothing but I didn't think it was fair to put her through a situation like that with me with a bag hanging down you know. There's no way that you can get rid of it for a little while either because you never know what's going to happen.

Did you ever ask her if she would be willing to carry on your physical relationship with it?

No.

Or you decided that yourself?

I decided myself. I didn't want to give her an opportunity to refuse because I felt, how can I put it, not embarrassed, that's wrong, I didn't want to put her in a position where she thought she was going to fail me in any way.

She had to cope with my illness which she did very, very well, she was fantastic, she was absolutely marvellous. I don't know what I'd have done without her actually, but to put her through that situation where maybe, maybe she would've said no, so maybe it would've made me feel worse.

So better off not to bring it up, better off just to leave things as they were.
 

He regarded managing a stoma as a skill to be learned.

You can't keep a stoma nurse with you all the time at your elbow because they're not there for you all the time. They're there for you to help you er but you must help yourself, you've got to, you've got to. But it wasn't a pleasant situation to start with.

What turned it around for you, what made you finally get to the point where you could cope with it yourself?

Finding it easier to do.

Technically?

Technically yes, you begin, it's like a tailor you know when you learn, when you're an apprentice, like I was years ago I never ever thought that I'd be able to make a jacket, to me it was a miracle how a jacket took place.

But obviously you go through it in stages and you've got to make it up in stages and eventually you do make a jacket and you're quite surprised the way you do, do it.

And it's the same thing, it's building up er your confidence to get things done and you have to get it done because otherwise there's nobody there. And funnily enough the psychological fact that nobody is there to help you, you have to help yourself, what more can you do?
 

Reflects on why it is often difficult communicating with doctors.

And you don't get that much information out of doctors and hospitals. I don't think they can be bothered because they think maybe they underestimate us, you know, maybe they think we're a bit too, not literal enough you know maybe they classify us as underlings you know.

I feel that sometimes, I do, I do.You know they don't classify you as a human being and they don't think you've got thoughts and they don't think that you're intelligent.

That's nothing against them but they're in a special club and one feels that you're intruding if you ask them too many questions "Why, what do you want to become a doctor? you know that's our game, you're the patient, you know stay where you are and we'll do the talking and we'll do the thinking for you. If you need an operation we'll do it, if you don't we won't," you know (laughs) That's the kind of attitude it is.

I think if they sat down like you do with me and just a one to one kind of conversation, down to earth conversation, whereas when you're talking to them you kind of forget that they are doctors, surgeons, misters, whatever they are, titled people with names behind them when they become a human being I think life would be a lot better and you could communicate better.

Because you become tongue-tied with them, I don't know what it is, I've never been tongue tied in my life but there's so many questions you want to ask a doctor and when he's with you you become like a kind of an idiot you know there's nothing you can say.
 

He remembers his two consultants arguing over his treatment.

And after a few days er he'd come to see me every day and we got talking because I'd come to and come out of it and he said that in his opinion the way things have gone he doesn't think that I needed chemotherapy but the consultant did think I needed chemotherapy.

So they had a bit of a argument over the bed, one one side, this was the surgeon and the consultant, same team and they were arguing over me. So I said' "Please can you talk straight to me, talk to me I do understand what's going on."

And they both said to me' "What do you want to do?" So I said' "Well I only want to do the best thing for myself. If I need chemotherapy I'll have it."
 

A sympathetic visit from his surgeon helped him after the attempt to reverse his colostomy failed.

He came up after his rugby uh, match and he had his rugby shirt on and a raincoat and he sat with me and he said, "I'm so sorry," he said "Did you hear what I said?" I said "Yeah, I did hear what you said."

So he says, "I'm gonna sit with you for a while and discuss things with you." And he asked me how I felt, and I said "I'm very, very disappointed." He says "Well, I knew you would be, that's why I've come to see you because in the, when I saw you before the operation, you were so elated about having an operation."

And did it help you that he'd come to see you like that?

Yes, very, very much so. I didn't expect it, because I know he's a busy guy, and even if he's got time off he deserves it.

No, I didn't expect, I expected to see him on the Monday or Tuesday you know, when they do pop in to see you. But I didn't expect him to come and sit with me and he also rang my other half, to tell her what had happened, and I thought that was very kind. Yeah, he was, he was very good, very good.

You listen to them and as they're talking somehow, that's like therapy. It is. Not all of them have got that bedside manner but uh, he wasn't too bad you know, he seemed to get the argument over and realised that he was getting to me, and I think that's why he stayed with me so long.

He realised that what he was saying was doing me good. And when he went a lot stayed in my mind and he said "You're healthy," he says, "You're fine, you'll heal up and you'll be OK."

Describes his initial disappointment at finding his colostomy could not be reversed and his...

I'd said "Well fuck it", you know! I did, I, I, I expected to be reversed but it hasn't happened. You know, what was going through my mind, I was just disappointed that I couldn't be normal again as I was.

And I wasn't going up in the air, or shouting and screaming or anything like that, I was just very silent and very, very not upset even, just, disappointed. I think that's the word, very, very disappointed. It's like not passing an exam. That's the type of feeling you know, and nothing worse than that. And the following day I just realised how lucky I was, really. And yeah, just get on with it.

So you know, basically, no I'm quite happy now, I must say and for anybody that goes through this situation, all I can say to them is that it's not the best but it's the best of, better than the other thing, right. So...

The other thing being?

Death! So, you know, that's what it is, isn't it? So, you know, what's better? Better to walk about with a stoma aren't you?
 

He urges people to seek advice early and to insist on further tests if no convincing diagnosis is...

Well I would say that you must react as fast as you can, as quickly as you can, see all the eminent people who are necessary, even if you have to start screaming and shouting to get yourself seen to properly.

I think the worst part about the whole deal with bowel cancer is that if you don't get bleeding, people don't think they've got bowel cancer. I never had bleeding.

I think one can walk about with it for a long, long time before you realise what you've got, that's the worst part about it really and then obviously as you know if you walk about with it for too long it can be too late. But you know one doesn't know and it's a difficult thing and I think, not blaming anybody, but I think the doctors as far as they're concerned are not positive enough.

When one's complaining with diarrhoea and they see that you're anaemic, they should all really jump to conclusions that maybe you have got something wrong, not just pass it off as anaemia.

If one's got anaemia there's a reason for it, not just left to say that you need to eat more greens and you know that's right.

So I haven't got the needle to anybody, maybe I've got the needle to myself for not seeing to myself quicker, you know when I was feeling rough. I just thought I was very, very tired.

But it just shows you, you know, that you've got to be more, more positive about yourself and maybe even if it's cry wolf, it's not such a terrible thing either.
 

Describes how he overcame his initial negative feelings about his stoma and developed a new...

I thought to myself, blimey am I going to cope with this I can't, you know, because I'm a very fastidious man and it couldn't have happened to a worse person than me because I'm very fussy, cleanliness is very, very important, but on reflection, sitting back and thinking to myself what alternatives has one got, you've got to cope with it because otherwise there's no other way out.

You never think that you're going to be able to put the appliance on, wash yourself, see to yourself, look at it, do it.

I couldn't look at it, I couldn't look at it and they knew that so my stay in hospital was an extra week because of that situation. But that was difficult.

But after a few times going to the bathroom with the stoma nurse and she put you through a kind of regime. You have to get things prepared, wash, get your appliance ready, get the stoma paste ready, to apply it and all the rest of it, and you go through all this, all of a sudden this becomes a ritual and you start doing it yourself and you become quite amazed and you become quite good at it. So by the time I left the hospital I could handle it.
 

Describes his initial disappointment at finding his colostomy could not be reversed and his...

I said "Well fuck it," you know! I did, I, I, I expected to be reversed but it hasn't happened. You know, what was going through my mind, I was just disappointed that I couldn't be normal again as I was.

And I wasn't going up in the air, or shouting and screaming or anything like that, I was just very silent and very, very not upset even, just disappointed. I think that's the word, very, very disappointed.

It's like not passing an exam. That's the type of feeling you know, and nothing worse than that. And the following day I just realised how lucky I was, really. And yeah, just get on with it.

So you know, basically, no I'm quite happy now, I must say and for anybody that goes through this situation, all I can say to them is it's not the best but it's the best of, better than the other thing, right. So...

The other thing being?

Death! So, you know, that's what it is, isn't it? So, you know, what's better? Better to walk about with a stoma aren't you?
 

Having decided to avoid sex until his stoma could be reversed, he had to reconsider when the...

Its not an easy situation because having had to accept the bag again hasn't made, say our sexual life wonderful, but it will be, it'll be OK, we'll have to get round it.

Just, is it, is it because you don't feel happy about it?

That's right.

Or because she doesn't feel happy?

No, it's because I don't feel happy about it, it's me. It is me, because I've discussed it with her and she, she you know, she's quite open about it, but I've discussed it with her and it's me. But I will get round, you know, oh yeah, oh yeah.

Because I'm quite positive in everything but it's just taking time because I'm over the initial disappointment of the operation, but having to cope with the bag, well, having told you that I am very particular, very meticulous it makes life not easy, not easy, but you have to accept it, you know, it's one of those things, so, you know.

No I, I think you know we'll get back on quite an even keel again, yeah, I, I can see that, yeah.
 

He felt safe in the hands of a surgeon who spoke frankly.

I was in no condition to know what was happening actually but I do remember the surgeon that operated on me he was looking at the pictures up in the air like they do yeah and he came over to me and he says' "Can I explain what happened?"

It was quite funny actually because it was like a TV comedy. He came over to me with the team of guys, this surgeon, and he said to me' "I'm afraid you know that you've got a blocked bowel and we've got to operate immediately."

One of the doctors next to him said' "Don't you think he needs further examinations?" So he said' "Fuck the examinations this man has got to go straight to surgery." (laughs)

So as soon as he said that I had a lot of confidence in him.I know it sounds strange, but I did have a lot of confidence in him and I thought he was terrific.

He shot from the hip and that's why when I went in for the operation I felt completely relaxed, it's amazing that. You know some surgeons are very, very aloof and very, very business-like, this guy was the direct opposite and he was terrific you know.

I think out of everybody that's the type of guy that one feels you know you could put all your, well you put your life in his hands really.
 

A sympathetic visit from his surgeon helped him after the attempt to reverse his colostomy failed.

He came up after his rugby match and he had his rugby shirt on and a raincoat and he sat with me and he said "I'm so sorry," he said "Did you hear what I said?" I said "Yeah, I did hear what you said."

So he says, "I'm gonna sit with you for a while and discuss things with you." And he asked me how I felt, and I said "I'm very, very disappointed." He says "Well, I knew you would be, that's why I've come to see you because in the, when I saw you before the operation, you were so elated about having an operation."

And did it help you that he'd come to see you like that?

Yes, very, very much so. I didn't expect it, because I know he's a busy guy, and even if he's got time off he deserves it.

No, I didn't expect, I expected to see him on the Monday or Tuesday you know, when they do pop in to see you. But I didn't expect him to come and sit with me and he also rang my other half to tell her what had happened, and I thought that was very kind. Yeah, he was, he was very good, very good.

You listen to them and as they're talking somehow, that's like therapy. It is. Not all of them have got that bedside manner but he wasn't too bad you know, he seemed to get the argument over and realised that he was getting to me, and I think that's why he stayed with me so long.

He realised that what he was saying was doing me good. And um, when he went uh a lot stayed in my mind and uh, he said "You're healthy," he says, "You're fine, you'll heal up and you'll be OK."