Interview 45

Age at interview: 66

Brief Outline:

When screened for bowel cancer in 2005, the Faecal Occult Blood (FOB) test was abnormal, so she had a colonoscopy. Two polyps were removed. One was found to be malignant (cancerous). Now she is well.

Background:

A white British woman, a retired care assistant, married, with 2 children.

More about me...

She was invited to take part in a pilot study and was screened for bowel cancer in 2000. The result of the Faecal Occult Blood (FOB) test was normal. She was screened again in 2003, and the result was also normal. When screened for bowel cancer in 2005 the result was abnormal, so she was invited to have a colonoscopy. During the procedure two polyps were removed. One of these was found to be malignant (cancerous). The next day the area of the bowel where the polyps had been removed was painted with dye. Six months later, in August 2006, she had another colonoscopy to check the bowel to make sure that all the cancer had been removed. Nothing abnormal was found so her next check up and colonoscopy will be in three years time.
 

Her initial attitude was, 'If you don't know, you don't worry'.

Right back at the beginning with the pilot study, did you wonder what the pilot study was, or was it all quite clear to you?

Well I thought, I thought actually, I did think it was a good idea, having, as I say, worked with clients that are like that, I did think maybe this is a good idea. But then when you're set with the task of actually, 'Should I do it?' In black and white; 'Should I do it or shouldn't I do it?' You think, 'Mm, I don't know if I want to do it.'

What put you off the most, what different factors made you [delay]?

I think, I think the thing that put me off most was, if there was anything wrong.

I mean, I suppose its like really, which is silly, if you don't know, you don't worry.

What you don't know you don't think about do you?

So it wasn't the actual doing the test?

Oh no, no. No, it wasn't that, it wasn't that at all, it was the thought that, well I'm alright.

Which luckily was right the first two times, I was.

But I think, I think that was it, more than, more than anything.
 

Because kitchen roll was stronger than toilet paper she used that to catch her motion.

It's very easy, but it is a little bit, I suppose you think, 'God this is unpleasant', because I mean, let's face it when you go to the toilet, it goes down the toilet and that's where you leave it.

And you don't deal with it at all do you? So I sort of read it and I thought, 'Oh flipping heck, I don't know whether I fancy doing, I don't think I fancy doing this.' So I went and got a piece of kitchen roll, so I thought, 'At least I can put it on there', you know, and I did it that way. And I thought, 'Oh, well it's not really very pleasant this'.

Because its not, in a way.

So you found kitchen roll was easiest?

I found, yes because its, its bigger, and I thought, 'Well that can go there, and then you can place it on that, and then put it onto your'' because you needed to put it down somewhere, because, you know the weight of the faeces, if you just used toilet paper, it would've split, and gone on your floor, on your working surface or on, in the bathroom obviously. So I thought; I felt that the kitchen roll was the best.

Yes, they do suggest different ways don't they?

Mm.

And other people have used kitchen roll as well.

Mm. For me, I found that was the best. And when my husband was doing his, I said to him, 'Make sure you get the kitchen roll'.
 

She felt frightened when another test result came back 'abnormal'.

And, and as I said we were both lucky. And then three years on, we had another test come which we did, and I didn't bother about that, I just did it. And, first because I'd had the good luck with the first one, and, and that was fine...and then we had another one, 2005, October, November time it was. And we did them, and then this letter plops through the post, saying that mine was abnormal, and nothing to worry about because sometimes it does happen. So there was nothing to worry about, but would I please do another test, and if that one was alright, they would send me another one in three months time to double check it. So I did it. And wow, it came back abnormal. Well I just knew, when I looked at the letter I thought, 'ahh,' and I said to my husband, 'It's abnormal again.' And I was really frightened then because I thought two abnormal's is not right. One you could, you know, you can excuse that, perhaps it wasn't right, a bit off, but two, one after the other, that was a bit scary I must admit.
 

She was given plenty of time think about having a colonoscopy but she decided immediately because she was afraid she might change her mind.

Then you heard the first two results were fine, and the next time was abnormal and you had to go to talk to the nurse. Can you remember in more detail what happened when you went to the hospital to talk to the nurse about it, that first time?

I think she sort of, she really sort of said in the first place, it, you don't have to worry, because it just, it might not be anything serious, and she did ask whether or not I wanted to go and have the...

Colonoscopy?

'if I wanted to go and do that. And she did say that I did not need to decide there and then. 

Because I could come home and think about it, and then ring her up when I'd made my mind up, and like I said to the nurse at the time, 'Well if I'm not going to do anything about it, it's a waste of time me sitting here.' Because, I thought if I'd gone this far, I'd either have to have ignored it right from the very beginning, not even done the second test, which was abnormal as well, or if I was going to do it, and there is something wrong, I've got to do it. 

Did she tell you about the possible tiny risks that go with having a colonoscopy?

Yes, yes, yes, I think you could bleed or something.

Well there is a very slight risk.

Very slight, but she said whatever risks were very slight.

Presumably you knew about the colonoscopy before you went to the hospital, because there was a bit in the information leaflet wasn't there?

Yeah, but you're not going to be one of them that has that [a perforation] done are you? You know what I mean. You know what. Yes, so it did say that you know some risk.

Anyway you made up you mind to have it.

Yeah, I made my mind up there and then because I knew that, first of all I was wasting their time if I didn't, and secondly I thought, if I go home, I might not. Do you know what I mean?

I could come home and think, 'No I'm not going to do it.'

So I thought, no, I've got to do it, now.

You made up your mind.

I made my mind up there and then. Yeah I did.
 

She thought the laxatives tasted 'sweet'. The third dose gave her watery diarrhoea over several hours, sometimes without warning.

Yeah so I know, it was three lots; it was, the first one wasn't too bad at all. That was like, a juice, there wasn't much of that. The next one was like a powder, which you mixed with water, that weren't too bad, but it was the amount of water you have to mix it with, that's the trouble. But the third one, and luckily because I like water it wasn't quite so bad, but the last drink where you have to have two pints of water, and then to try and drink two pints of water afterwards, that wasn't too bad for me because'it was, I can drink a lot of water.

What did it taste like?

It didn't really have any, it was funny really, because it was'everybody said it would taste really horrible, but it did, it really tasted like nothing, but sweet, and I'm not a sweet, it tasted sort of sweet to me. And that was the only thing I didn't like, it wasn't the fact, it was the sweetness. But'

What effect did it have?

The very first one I did, when I had to go for the first colonoscopy, that, that wasn't too bad at all because it moves your bowels. Well that, I wasn't too bad at all on the first one because it was just, it started about 8 o'clock in the evening, and by 10 o'clock I'd finished. And I was completely flushed out.

But when I had to do the third one that was horrendous. Because I took the same procedure, I've drank all the same, you've got said times in which to take it. You have to take them at the regular intervals; times that they give you, but I took the last one and that from the moment I took it, till about one in the morning, I spent on the loo.

Oh gosh.

And that was horrendous. But you don't, you don't actually go to the toilet as such, because it's just like water flushing out of you. But it comes without warning, so the door was open and the toilet, luckily our bathroom is downstairs, I was, if it had been upstairs I'd have had to have gone to bed. But luckily with our bathroom being here, I could just make a dive for it. All the doors had to be open, because you don't get any warning.
 

She had 'terrible' cramp and lay on the sofa all night with a hot water bottle.

And then I had the camera, which was not too unpleasant I have to say, at all. And I actually just watched the whole thing on the television screen, and it was rather fascinating, to be, I have to be honest. That rather fascinated me. Because I do like watching hospital programmes on the telly. Obviously it's not quite the same when it's you on the telly [laughs] you know what I mean? And, so that was it, but they did say that the effect afterwards could be either nausea, there were three things but I can't remember what the third one was, or cramp. And there was something else, but I have to admit I had the cramp, really really bad, that was worse than the whole rest of the procedure. 

Really.

Yes really, it was terrible. It was really, really painful.

Tummy pain?

Oh yeah. And I'd still got them by the time I got home; I had to lay on the sofa all night with a hot water bottle. And that was really, really bad; I really have to say that was worse than any of what I'd gone through.
 

The treatment she received was 'first class.' She thinks that screening and early diagnosis prevented the need for major surgery and perhaps even saved her life.

But I think, with the treatment and the care I had, I mean it was first class. And they were all so kind, everybody, even down to the, to the nurse that's just put a needle in my hand, they were all so, so good, they really were. And I would say, you're going to be scared, and you don't want to do it, but I think it is a very wise thing to do in the end of the day. Because if there is anything wrong, like there was with me, that I didn't know anything about, anything being wrong, it really saved my life, or me having a big operation or a colostomy bag. You know, in short, it's what its really done for me, it has saved me and then I'm here for my family, and you know, because we did tell the, we told the children. I think I told the children after, after I'd been, the second one, and that was abnormal, and they were all worried and everything, which they're going to be, and then I came back and told them everything was alright, and it was wonderful to be able to tell them that everything was alright, you know. That was really nice.