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Interview 37

Age at interview: 65
Brief Outline: He was invited to be screened for bowel cancer in 2006, when aged 65. After an abnormal Faecal Occult Blood test he had a colonoscopy, during which two benign polyps were removed.
Background: A white English man, a secretary/driver, married, with 3 children.

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He was invited to be screened for bowel cancer in 2006, when aged 65. The result of the first Faecal Occult Blood (FOB) test was unclear, so he was asked to repeat the test. The result of the next test was normal, but he was asked to repeat the test once more, and this was found to be abnormal, so he had a colonoscopy. During the colonoscopy two benign [non-cancerous] polyps were removed. He has been asked to return for another colonoscopy in two years time.

 

Initially he thought it might be unlawful to put faeces in the post, but soon saw that the...

Initially he thought it might be unlawful to put faeces in the post, but soon saw that the...

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How did you feel about putting it in the post?

Well, initially I thought I'm sure there must be some law against putting this kind of thing in the post. Then I thought, 'Well don't be foolish, it's obviously done the best way it can.' But because the sample is clearly secured, not only within itself, but it then goes into an envelope which is the most secure envelope I've ever come across, there was no way that anybody anywhere could've known what was inside there. I mean when they said they were going to send me a kit, I don't know why, I was thinking of a cardboard box. But its not, it's just an envelope sized thing. It's as simple as that, its goes in an envelope, not even A5 size, much smaller than that, flat. Nobody would know, or have the faintest idea what was in there.

 

He was glad to read that an unclear or abnormal FOB test result does not necessarily mean a...

He was glad to read that an unclear or abnormal FOB test result does not necessarily mean a...

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Yes. Can you remember that you got an information booklet with the first invitation letter? What, what did you make of the information?

It was absolutely brilliant. Anything and everything that I could have thought of to ask about, and other things, were answered, you know, all the questions, all the queries, why, what, where, when, how, percentages. Very important. In fact, if I might move off that briefly, even when my first test came back unclear, the very next words were, 'This does not mean you've got cancer.' And I thought that was absolutely brilliant, and so important to say, 'Hey, hang on a minute, you know that's just one of these things'. It could, but it doesn't mean you've got cancer. Wonderful. And it was also well explained in the booklets as well. Couldn't go wrong.

I think in the booklet it mentions the colonoscopy. Do you think it is a good thing or a bad thing that they mention the colonoscopy in that initial booklet?

I think it's good. I think you need to know the ultimate outcome of what might happen to you. It could be that you have a clear test and that'll be the end of it. But you need to know well if it's not clear, if they think I need to, what is next along the line. What ultimately is going to happen? So I knew, you know, and I thought that important.

So the amount of information was about right?

It was indeed.

 

Missing a day did not matter as long as stool samples were taken on three different occasions.

Missing a day did not matter as long as stool samples were taken on three different occasions.

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Then you had the test kit that came through the post a week later. That came with an information leaflet too. Can you say something about that information leaflet?

Well only as in much as it fully explained precisely what we'd got to do, how to go about it, how it was necessary. It was very straightforward, as simple as that. I knew that I'd got to take samples from my motions, on three separate occasions.

Was it clear to you that you had 14 days to do it in?

Yes, I remember thinking well sometimes I have a bowel movement once a day, twice a day, you might miss a couple of days, but I thought well that's not a problem if I've got 14 days, I'm not going to worry about it.

Particularly if, and there's no easy way of saying this, but if one has a particularly loose bowel movement, it's not the easiest, or most pleasant thing to do. So that one had got 14 days and that didn't, wouldn't have been a worry. So no, it wasn't a problem at all. It was very much something that I did, I didn't tell my wife, I don't know why particularly, she's very supportive, always has been, but I didn't. I did the one sample, put it away, did the second, then the third and this was all done over a period of 48 hours I think, in my instance.

 

He put newspaper on the floor and toilet paper on top of that so that he could collect a sample...

He put newspaper on the floor and toilet paper on top of that so that he could collect a sample...

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I think on the information leaflet they give you various ways that you might collect the sample.

Yes.

How did you, what did you find was the easiest?

Well, they talked about using a receptacle which you could throw away thereafter, or using a, a plastic glove and catching the sample, which I found almost amusing really, I just couldn't get to terms with that. So personally I found that just by putting the newspaper on the floor in the bathroom, putting strips of toilet paper on the floor, depositing the sample on the toilet paper, means that when I'd taken the sample and spread it onto the, onto the card, I could then pick up the toilet paper with the with the stools if you like, put in the toilet and flush it.

The only thing I would say, I mean this is, I don't know if this is worth mentioning, the actual things that you use to take the sample, which are like cardboard lollypop sticks is the best way to describe them, it would be nice if it was possible for those to be flushable. They do ask and you find that one, you've got to wipe the stick, so then you can fold them up, wrap them up, and put them in a bin etc etc. But it would be nice if it was possible at some stage to be able to put everything that you've used, everything, in the toilet and flush it away. That's my only comment.

(Note' The sticks used to be made of wood. They are now made of cardboard and can be flushed down the toilet)

 

He felt reassured when he was given the odds of having a serious problem and told that an...

He felt reassured when he was given the odds of having a serious problem and told that an...

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At this stage, all kind of things go through your mind. As far as I'm concerned, I've got no major signs or symptoms. I mean I know that when it gets to a certain degree there can be passing of blood from the back passage, there could be pain or discomfort. I'd got none of that at all. No outward sign of symptoms. So that was somewhat reassuring, and I'd only got to wait about three I think, or four working days before going along to talk to somebody about the colonoscopy. They were brilliant at explaining everything from A to Z. They went all the way through, and what was particularly reassuring was the fact that they gave me the odds. You know, how many out of 100 were likely to have problems. How many would have no problem at all, the fact that because it was abnormal, didn't mean to say that you'd got cancer, that you'd got anything wrong with you at all. And that any microscopic trace of blood which could come from various sources, would be sufficient for them to send you for the test, for the colonoscopy.

 

He added orange squash to take away the taste, but the medicine still didn't taste nice. It gave...

He added orange squash to take away the taste, but the medicine still didn't taste nice. It gave...

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Right, I had, two small bottles came along in this kit. This was given to me at the centre where I went to discuss it. And I had to take this, mixed in with water, at 7 o'clock in the morning to begin with. I'd been told it wasn't particularly pleasant to taste, and they recommended that I put it in some orange squash, which I did. It still didn't taste nice, but it was far less unpleasant than it might have been. So that was OK, took that. And then I took the same mixture again 12 hours later. Then starting from about 3 hours after the first laxative, I began going to the toilet. And I did so on and off up until going to bed at about half past ten. So I probably had seven or eight bowel movements and by the last two or three was literally passing water. No discomfort, but I stress although its diarrhoea of course you're passing, there's no stomach pains, there's no stomach cramps. There's no problems in that respect. You just have to go to the toilet and for obvious reasons you can't do this other than at home. Because then when you need to go, you can go.

 

The doctor wanted him relaxed but not too drowsy during the colonoscopy.

The doctor wanted him relaxed but not too drowsy during the colonoscopy.

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What happened was I was asked, I got undressed, and I put two gowns on, one backwards, one frontwards. Then I went in and lay down on this table, and the doctor then came and told me what he was going to do. He put a shunt, I think you call it, in my wrist, and then he injected various liquids saying this is going to make you not necessarily drowsy, just relaxed. He said, 'We don't want you to go to sleep, you don't need to over relax,' he said, 'Because if what I'm going to do becomes a problem in any way I want you to tell me.' He said, 'And that's no good if you're asleep.' So he put this liquid in and he told me exactly what he was going to do. He showed me the instrument he was going to use, very flexible, a lot thinner than I had expected, a lot thinner, barely as thick as my finger, little finger that is, and then he began the treatment, he began to insert it. Now I was aware that something was being inserted, of course I was, but it wasn't, it wasn't unpleasant, it wasn't particularly discomforting, certainly wasn't painful. And he did stress that if at any time I felt pain or a problem he said, 'You must let me know,' he said, 'because, what you can feel is important for me to know about'. 

And he said, 'There are problems', and I should have said that even before I went in, I got undressed, the doctor had said to me, 'Look' he said, 'Ultimately, there is one in half a million chance we will say of  bowel perforation, which is a serious condition' he said. He said, 'It rarely happens, of course' he said, ' But if you're awake and something doesn't feel quite right, you can tell me, and I can take steps to correct it, put it right.' Again all along the line there was so much reassurance.

Footnote' The colonoscope can cause a hole (a perforation) in the wall of the bowel. The chances of this happening are about one in 1, 500.

 

He felt a cramp but this was relieved when the doctor withdrew some of the air from the bowel.

He felt a cramp but this was relieved when the doctor withdrew some of the air from the bowel.

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Now for me personally the actual insertion of and movement of this camera was not a problem at all. It was not even discomfort. It certainly wasn't painful. And as he's, over the half an hour or so I suppose that this was taking place, he actually identified two polyps which he said would probably be no problem at all, and that while he was there he would be able to remove the polyps. Which he did. I actually saw this being done. With a piece of wire coming out of the end of this tube, wrapped itself around this polyps, it disappeared, and then he moved onto the second one. That was it. The only thing throughout this was that I did get discomfort in the way of wind, wind in your tummy. You know like cramp, stomach cramps. But as soon as I mentioned this to the nurse she spoke to the doctor and he got something attached to this, which withdrew this air, this wind from the stomach and relieved me. So even that wasn't a problem for me. 

 

After his colonoscopy he thought that his oxygen levels were a bit low for a while. He had no...

After his colonoscopy he thought that his oxygen levels were a bit low for a while. He had no...

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After the colonoscopy, did you have any side effects?

None whatsoever. Oh, no. That's not strictly true. When I was lying on the bed for this hour that they'd told me to do, they put like a peg, the thing they put on the end of your finger, which checks on your blood oxygen level I think, and that went off a couple of times, and the nurse came straight over and said, 'Just take some deep breaths', which I did. And that was it, after two or three times they took the peg off, and she said, 'Are you feeling fine?', 'Yes', and then I was allowed to go home.

No real discomfort?

None whatsoever. I didn't drive for the following 24 hours but I had no side effects. I began to eat normally, thankfully, and no effect. I mean I thought that perhaps the next day I'd feel sore around the bottom, you know, but I didn't. I didn't feel any reaction at all.

How long did you feel you should take off work?

I took the following day off.

 

He recommends screening for bowel cancer for anyone 'of a certain age' because early diagnosis...

He recommends screening for bowel cancer for anyone 'of a certain age' because early diagnosis...

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Have you got anything else you'd like to add about screening for bowel cancer that we haven't mentioned?

No, not really, I can't fault the system from start to, from when it landed, came through the letter box, landed on the mat, until I got the clearance and I was told I was ok, everything that happened was superb, excellent. Everybody's so nice, you know, nurses sat with me one to one and spoke to me, friendly and, it was just brilliant. I never once felt embarrassed. I mean the nurses, needless to say were all girls, ladies, and I thought before I went in, I thought I'm going to lie there with someone shoving something up my bottom, and there are going to be nurses there' but I didn't think about it, it just didn't enter my head, and having been in with testicular cancer, well been there, done it, you know what I mean.

It's necessary, women go in to have their breasts looked at to check for breast cancer, you know. If you've got a problem with your waterworks then you've got to have your willy looked at, and if you have problems with the other side, you've got to have that looked at, so, go for it. Live Longer.

So I can only recommend this to anybody and everybody of a certain age group. If it applies to you, don't throw it in the bin and think, I'm not going to mess with that, ooh it's this, ooh it's that. Look, if you've got problems with your willy you take a urine sample to your doctor, you don't even think about it, it's normal, it's natural. Why on earth, if you've got a problem with our back passage, or we think we might have a problem, we can't do the sample of that, I don't know, I guess because it's more unpleasant. All I can say is, it's over, it doesn't take long, the outcome is well worth knowing about, and if you do at this early stage and there is a problem, the odds are, overwhelmingly, that you could be cured. I recommend it, everybody.

So have you got any message for other people finally?

Get it done. Get it done now while you're feeling fit and well, don't wait, you know, who knows, by the time you start to get the full symptoms, I'm not saying it's the end of the world, but you certainly probably going to have an operation. You go there, can you imagine what it's like dancing around the room because you've been told you haven't got it. You've got no trace of it. And the odds are that's exactly what they are going to say to you. Yes, it just makes sense. Think about your, your daughters, and your wives, changing babies nappies, they've got that stuff around them all the day, all the time, and they get on with it, because it's necessary. What I'm saying is it's necessary for you just for a short period of time, to get involved with that messy side yourself. Then it's done and over.

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