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.
He was reluctant to repeat the test because he had little time.
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.
He held some toilet paper underneath his bottom in order to catch his motion.
At first he was sceptical about screening for bowel cancer.
At first he was sceptical about screening for bowel cancer.
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.
He was still sceptical about screening when he was asked to repeat the test.
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...
He did not believe that there could be anything wrong because he felt fit, members of his family...
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...
He was more concerned about taking time off work than about what the abnormal test result meant...
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...
He slept through his first colonoscopy and remembered nothing. He had a later colonoscopy without...
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...
The surgeon told him he had cancer and showed him pictures of the inside of his bowel. A nurse...
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...
He found the surgery 'devastating' and was in hospital for three weeks. He needed a temporary...
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...
He is sure that early diagnosis prevented his cancer from spreading and is now convinced that...
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.