Interview 01

Age at interview: 67

Brief Outline: Invited for screening in 2001 when aged 62. The first Faecal Occult Blood (FOB) test suggested there might be a problem, so test repeated. He had a colonoscopy, was diagnosed with bowel cancer, had surgery and a temporary ileostomy.

Background: A white British man, retired swimming coach, married with 3 children.

More about me...

Initially he did not want to take part in screening for bowel cancer, mainly because he did not think he was at high risk of getting the disease, because he felt well, and was busy, but his wife persuaded him to do the Faecal Occult Blood (FOB) test. He was told the result was abnormal, and he was asked to repeat the test on two more occasions. After the third test he was invited to have a colonoscopy.

The colonoscopy confirmed that he had bowel cancer. This diagnosis came as a shock, because although he had had blood in his stools [motions] for many years, his GP had told him that this was due to piles [haemorrhoids]. 

Sixteen days later he was admitted to hospital for surgery, and was in hospital for three weeks. Part of his colon was removed and he had a temporary ileostomy. He was off work for four months. The ileostomy was reversed after six months. Since then he has felt well and has had follow-up checks every six months. He has been involved in the local support group, which he finds helpful.

He was reluctant to repeat the test because he had little time.

And what was your reaction when you heard that you had to do it again and it was a positive result for that?

As I said, I just thought, they've found someone they can, prolong the job with. You know I've sent it off and now they say it's positive. Of course probably what I was doing was disbelieving what they were saying to me or misreading probably. But I just felt that, 'Oh this is not for me. I can't be dealing with this going on like this'. Actually I thought it was going to go on for too long, you know. Because I'd got a busy life, I'd got things to do. I didn't want to keep having to spend a few minutes in the morning spreading faeces on little discs, you know. So it was quite an inconvenience more than anything really if I, if I sum it up. 

But your wife persuaded you to send it off again?

Oh yes. She was quite insistent.

He held some toilet paper underneath his bottom in order to catch his motion.

It depends on the individual but the thing is if your motions hit the water they can deteriorate, so the way that you have to do it is to make sure that you prevent your motions from going into the pan. You can do that however you like. In my instance I simply held the paper underneath my bottom and caught it on the paper. And then it, if I remember correctly, it asks you to take samples from different parts of the motions which is exactly as I said. You just take a small sample on a little wooden spatula which is provided and smear it onto a little round disc which you then fold the flap over and cover over. On the next time you pass motions again you do the same again and you repeat that three times. Then the whole thing is folded into the envelope and posted off. It's a simple, easy enough to do but, you know, some people might find that a bit disconcerting but I didn't find any problems at all.

At first he was sceptical about screening for bowel cancer.

And what was your initial reaction when it came through the door, the letter of invitation?

Forget it, forget it. Don't. As I said, I'm a male and I'm a, a dedicated sceptic. I just thought well. I had no problems. I had no problems as I thought. So it was something that I didn't need to concern myself about, but it proved to be wrong.

When you said, 'I'm a male' what did you mean by that?

Well we're notorious aren't we for ignoring bits of stuff like that or going to the doctor's or. So I just mean that females are far more ready to, to carry out screening than the males seem to be.

He was still sceptical about screening when he was asked to repeat the test.

So in the end what influenced you mainly to send off the, the test? Was it your wife did you say?

Yes my wife's insistence. But I think after, when the second one came I would have probably have binned it to be quite honest because my feelings were that they found someone that they could probably prolong their job with. You know this is someone that we can keep it going. You know I didn't really understand what it was all about at the time. And looking back of course that was rather foolhardy but at the time I kept thinking, oh you know they've found someone they can, they can carry this on for a long time, you know. Justify their job really which is typical of me.

He did not believe that there could be anything wrong because he felt fit, members of his family were all well and he had healthy eating habits.

I undertook the screening simply because my wife said, 'We'll do this and we're in the right age group for this particular screening', which is the pilot scheme here. But I didn't feel it was necessary because we we're a fit family and our eating habits are what they regard as healthy eating now. You know, but we're used to having plenty of vegetables and fresh meat every day you know, so I didn't feel that there was anything wrong with me and I didn't think I'd caused any, any ill effects on myself. It was only just recent. It was just at, about that time that the children said I didn't look so good and that I didn't, I wasn't as strong as I used to be but I just put that down as an ageing process.

So it was good that you went ahead. 

Yes it was very good.
 

He was more concerned about taking time off work than about what the abnormal test result meant for his health.

And then what happened? You had another, another was sent to you a month later?

I had a letter saying that the second sample had not proved conclusive, something like that. And that they would be in contact with me in a month's time. I think it was a month or a month's time which they duly did. That one rather confirmed the issue. I did it again then and sent it off and that must have showed a positive again because it wasn't very long before the local hospital sent me a letter saying that I was invited to go for a colonoscopy.

What were your feelings at that stage?

Well I didn't really know much about the terminology. I didn't really know anything about the process and I just thought that it was a damned inconvenience really, having to take time out. I was working in a job where if you have time off you need to find someone who can cover your work. It's not the sort of job that you could actually shut down and stop. Someone else would have to be there with so many people involved. So that was troubling me rather than the ultimate outcome. If you know what I mean, the fact that I'd got to keep making arrangements for things rather than the implication of my health.
 

He slept through his first colonoscopy and remembered nothing. He had a later colonoscopy without sedation.

For me the colonoscopy was simple, simple in itself because the first thing they do is prepare you by making sure your bowels are totally clear although you have already gone through a preparation period when your bowels are empty. You don't actually have any [faeces in the bowel] but they still give you an enema. And then they give you a local anaesthetic which he said, I might be aware of what's going on. Although I'd had this anaesthetic in fact I went to sleep. One of the best sleeps I've had for ages, I simply just went. And I was a long time before I actually came back. I think my wife had called in a couple of times. They said, 'Oh he'll be another fifteen minutes, he'll be another fifteen minutes.' And so I continued to sleep quite merrily on afterwards. So the, the colonoscopy itself I have no recollection of at all.

What sort of anaesthetic did you have, just a bit? 

Just a local anaesthetic.

Local anaesthetic.

I think it's, delivered in the hand. 

As a sedative or something?

I don't know but it certainly puts me to sleep.

I've since had another colonoscopy of which I didn't have anaesthetic and I have to say that it's not a comfortable thing if you're awake. It's not a comfortable thing but it's not painful. It's just that, it's not normal to me anyway. So I've experienced both with anaesthetic and without and I would prefer it with really, because you know, you're just not aware of what's going on.
 

The surgeon told him he had cancer and showed him pictures of the inside of his bowel. A nurse helped him and his wife come to terms with the situation.

Yes I was invited, I had a letter come to tell me that I'd got to report to a local hospital for a colonoscopy which informed me also that I would require three days. One day for preparation, one day for the colonoscopy and then one day for recovery. And then I was also told that it would be about a week to go to see the local surgeon. On the morning that I was to go and see the surgeon I also received a letter saying that I was required to report to the hospital for a liver scan which at that time I, I have to say I was totally confused. I didn't know what was going on. It had suddenly escalated into this situation where I was thinking, now I don't know what's going on. I knew what would happen once I started this, it would escalate to a point where I couldn't control it. Still thinking that there was simply nothing wrong with me.

So that was before you'd seen anybody to get the results of the colonoscopy. You were asked to have a liver scan?

Yeah. The letter came on the day that I was to go for the interview with the surgeon. It came on the same morning. We were about to go to the hospital for this interview with the surgeon and it came through the door. So I, I had a quick look at it and, that was it, I thought, 'Well I don't know what's going on. The whole thing is going complete, completely mad now.' And I think that perhaps it's worth noting that we were very fit because there was never a time, a weekend when we weren't out on the bike. Our holidays were centred on cycling and we were always out walking. And it seemed completely out of order, what was going on considering our lifestyle.

And then when you went to see the surgeon what did he say exactly? How did he explain what he'd found or done?

I have to say my surgeon is a true gentleman but he's not exactly a man of mirth although he delivers what he has to say pan-faced. When we went in he said that. He showed me some quite explicit pictures of what a perfectly good bowel looks like and then he showed me some pictures of a bowel with polyps in it and he said that he could cope with that perfectly alright. That was something that could be dealt with quite easily. And then showed me something that he said that he couldn't deal with and it was not a pretty sight. And that was when he said it was my bowel which I disbelieved and said that he must have the wrong pictures. Of course, he said no, I've got the right picture.

So that must have been a big shock for you?

Yes it was a shock.

And how did you manage, how did you cope with all that, that day?

Well I must have sounded like a gibbering idiot really but. Well it was difficult to cope with. I don't know how I coped with it really but I did have the benefit of the nurse that was present taking me into a small room and then giving, giving us an opportunity to come to terms with it with less impact. You know we were able to, to take it in. And she was very easy with us, allowed us time to come to terms with it before we left the hospital.
 

He found the surgery 'devastating' and was in hospital for three weeks. He needed a temporary colostomy (stoma).

Yes, the surgeon said that he would need to have me into hospital within three weeks. It was indeed only 16 days when I went into hospital. It seemed a very short period when I got notification that I could go and I'd just have to phone up for a bed which was available straight away. So once I'd gone into hospital, still not believing fully that there was something wrong, but having to accept the information that I'd been given, I went on the Saturday night and on the Sunday I had a preparation on the Monday morning. There was simply no turning back unless I was prepared to jump off the trolley and run away. I was in their hands.

And I went in feeling quite well but for the next two weeks I didn't feel at all well. I couldn't sit up or anything. You know the surgery had been quite devastating really. It had, well any surgery but I was informed that the surgery that I was going to have was major but I didn't realise that major surgery [laugh] meant immobilising me completely.

And you had part of the bowel removed and a stoma created?

Yes, I had the colon, part of the colon removed and then they had to put a temporary stoma bag on so that I could clear my bowels which I kept for five months.

How did you find managing that?

At first it was difficult but as time when on I started to come to terms with it and once I'd got fit we walked the Cotswold Way and I didn't have any problem with walking the Cotswold Way with it. But servicing it could sometimes be a bit frustrating. It wasn't quite the same as normal motions. So you had to find some way you could, you could service it yourself. But no I didn't find a problem and I've talked to a lot of people who've got permanent ones and they are great people. They soon come to terms with it after about a year I think they are perfectly adept to working with it and it never seems to bother them at all.
 

He is sure that early diagnosis prevented his cancer from spreading and is now convinced that screening is useful.

Life's pretty good now. I think having gone through it I've been a lucky one because the screening picked up on something that could have developed into a much worse situation. Early diagnosis has got to be the reason I recovered so well. If it had gone on and it had spread into other parts of my body, I certainly wouldn't have been able to have recovered quite as quickly.

So what's your view in general about the National Screening Service?

It's got to be the way forward for everything. I mean it has worked for ladies with mammograms and other forms of screening. It's got to, whatever you can get early detection I think that it will be the way forward for curing cancer.