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Interview 30

Age at interview: 61
Brief Outline: Screened for bowel cancer in 2006. The result was abnormal, so he had a colonoscopy. Six polyps were removed. They were all benign except one, which was "potentially malignant". He will have another colonoscopy in 2007.
Background: A white British man, a retired archaeologist, married.

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He was invited to be screened for bowel cancer in 2006. The result of the Faecal Occult Blood (FOB) test was abnormal, so he had a colonoscopy. During the procedure six polyps were removed from the bowel. They were all benign except one, which was found to be 'potentially malignant'. He will have another colonoscopy in February 2007 just to make sure that the bowel is healthy and that no more treatment is required. 

 

He developed various alarming side effects after the colonoscopy.

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And what other side effects did you have?

Well after the colonoscopy I came home and we had a meal and I must be honest I had the desperate desire for fish and chips and we stopped in and collected some fish and chips, which we don't normally eat, had the meal and about two hours afterwards I began to develop this sense of extreme cold and uncontrollable shaking and with that uncontrollable shaking I had terrible headaches. My wife put me to bed with a hot water bottle, wrapped up in my pyjamas and a dressing gown in bed with the electric blanket on, and I fell asleep round about 9 o clock in the evening, which for me is extraordinarily early, as I normally go to bed about 1 to half past in the morning. I slept in until about 8.30 the next day, and I was up and around as normal but I had this terrible sensation that my bladder was very badly bruised, almost as if it had been kicked around a football field for a day and I had cramping problems in the stomach which I expected because of the air that had passed into the stomach through the procedure. The sensation of the bruising of the bladder and the cramping pains persisted for three to four days afterwards, before they stabilised and became normal again.

 
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He thinks that the screening programme pilot is very useful.

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So summing up what's your view of the national, of the screening programme?

I think in summary it's a very, very useful programme and I hope it will be extended over the whole country* and I think there maybe the possibility for similar programmes to enter different fields of healthcare, and the more and more general screening programmes there are the better, preventative medicine is far better than curative medicine.

And have you got any message for other people who may be wondering whether or not to take part in the screening?

Well yes certainly, go and do it, because peace of mind that comes from knowing one is clear is very, very useful. It's good medicine.

 

* Since this interview the bowel screening pilot programme has been rolled out accross the country.

 

He was worried about contamination and thought the test kits should be sealed more effectively.

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And then you had to put it in the post, how did you feel about putting it in the post?

I thought that without having some form of seal over it, it was a little bit dodgy and I thought it was risky to send a toilet sample through the post, not in a sealed container. I did think that the sampling wallet with the little stick down windows could have been more secure from a health contamination point of view.

Perhaps there could be a peel off label or something to seal the window down securely rather than a little tuck in flap. It doesn't strike me as being good hygiene.

Did that worry you at the time?

From the point of view of general health and the fact there must be thousands of these things going through the post, yes, because bacteria have no regard to a piece of paper and sticky tape over the end. It should be sealed more effectively than it is I think, bearing in mind that the laboratory technician has to open it, but there could be some method of sealing it down a bit more securely I think.

 

He used masking tape to fix toilet paper across the rear half of the pan to catch his motion.

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It took me about three weeks actually, I think it was, to actually get round to doing it. The screening kit arrived on 5th September and they sent me on 30th a reminder, and it took me until 4th October to get round to doing it so it was just on a month. Here of course one comes back to this reluctance and also the problems, the physical problems of how to collect the sample, which mustn't fall into the toilet. How does one actually do this? Now we had household jokes about Marigold gloves and one's wife catching the required sample, which is of course not pleasant and totally unrequired, but I solved the problem in the end by making up two almost like thick bandages of toilet tissue, and suspending them in a cross shape over the rear half of the toilet pan, having taped them with masking tape to the pan so they wouldn't drop in, so that when one went to the toilet the stool was caught at the back and one could pass water at the front without affecting the stool at the back. I was told afterwards that some people use Cling-film to catch the sample but it's not pleasant, to have to delve into one's dung to take a sample. The other thing that I did find; could have been better informed in the information pack, is how much of a sample does one have to actually put on the screen? There are two little sockets in each of the three windows, but how thick a smear does one have to give? I found that a slight problem because it's quite unpleasant to have to handle.

 

The nurse gave him an information booklet which explained that the colonoscope could perforate...

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Then you got the results of the first test kit, it came back as abnormal and they didn't ask you to repeat it? 

No.

An appointment straight away to go down to the hospital?

I had an appointment straight away to go to the local hospital.

Did you go on your own for that appointment?

I did because my wife was at work and there was no reason for anybody else to accompany me, so I went along and I was given instructions about what would happen, what the procedure was about, what the likely outcomes would be and how the procedure would be undertaken.

Did the nurse explain that there's always a very small risk with a colonoscopy, did she give you the pros and the cons?

She did indeed, yes, and the leaflet gave some useful information about the risk factors percentages, where the wall of the colon could be penetrated and broken and the fact that was about 1 in 1,500 I think, which is an extraordinarily low percentage, so the risk factor was very, very low and didn't really play a part in my decision to have it done.

 

He ate a small portion of white fish and white bread instead of his usual high fibre diet to...

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My preparation was a bit more severe, austere than the recommended treatment. For a treatment [colonoscopy] in the afternoon one had to take the Picolax sachet the previous night and one the following morning with a rather meagre diet. I had to take a portion, a small portion of fish the night before, but as I say I started this austerity regime a day earlier because I thought that there's no good going through a purgative scheme when one doesn't need to have that. It's far better to withdraw gradually from diet, and after all two days going rather hungry doesn't hurt anybody, so my last reasonable meal was a small bowl of cereals in the morning of the day before the procedure of running down should have taken place, so it's two days before, and I then had a slice of white bread for my lunch, and I hate white bread because it's awful; we always eat good high fibre, wholemeal or granary bread, so I had one slice of bread in the middle of the day and I then had a very small portion of white fish that night and then the next day I started the procedure running up to the taking of the Picolax as I should as was set out in the form, and that didn't cause me a problem at all, apart from the fact that the smell of boiled white fish hanging around the house persisted for about four days and it was totally repugnant. I would rather go without the fish and have nothing than have the smell around the place.

 

He had six polyps removed from the bowel. One was potentially malignant. He was fascinated to see...

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It was scheduled, I understand, to be a 45 minute procedure but because they found problems, I had six polyps, three of which apparently were quite serious, one, from the results that I was given yesterday, is potentially cancerous and malignant, it took a lot longer. I actually underwent an hour and a half long procedure and had it not been for the rather wonderful staff nurse who was with me at my head during the procedure; I was told I was going a bit green but I did see it through because quite obviously it has to be successful, otherwise there's no good in actually having it done, and the removal of the offensive parts, the polyps, was the obvious aim of the exercise.

So did they remove all the polyps?

They removed all six but the final one, right at the top of the colon apparently, was the one which was giving the greatest concern and rather than being the kind that was on a, like a stalk, it was rather a flat structure, on the wall of the colon. They believe they've removed all that, and they believe that they have an almost 100% success rate, with those removals, but I have to go back in February next, that's three months' time for a further check just to ensure that everything is okay and thereon I will be on an annual check programme, if everything is okay.

During the colonoscopy could you see what was happening on the screen?

I did yes, it was rather intriguing, to watch one's inside in colour. I had no idea that it looked quite like that, and I was fascinated by the fact, as a photographer that things were so bright and so clear and so high definition on the screen and how clean the inside of the, the colon was. I didn't expect it to be quite so bright and so pink with the problems of the polyps so obvious.

And could you see them removing the polyp?

Yes I could, yes, but I couldn't feel anything internally. It did surprise me somewhat when I learnt that invasive techniques like this, when things were being removed from the wall of the colon, had no sense of feeling, because the internal area of the stomach there does not have the same sense of touch and pain as the external parts of the body. I didn't actually feel them being removed at all, I just watched them and it was quite fascinating.

 

The nurse was very concerned and told him in a very tactful, positive way that a polyp was ...

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I think you said at the beginning that this particular polyp was malignant, or it wasn't?

It was.

So it was.

This particular one that was giving him concern was potentially malignant and cancerous, but he was also very, very sure in his own mind that he'd removed all of it, and that there wouldn't be a problem, but the situation pertains that it's sufficiently serious for me to go back in three months, for it to be to be checked out again.

How was the, all this news delivered to you yesterday, how did the interview go?

With the same staff nurse, well the same nurse practitioner who I had a point of contact with all the way through. I think that's a very, very good thing, the degree of personal contact with one member of staff with whom one can identify, and take a problem to and who's quite willing to answer any questions at any time should there be anything causing concern, and she was very, very concerned and she delivered the results to both my wife and myself, in a very, very tactful, but very positive way and I must be honest she was talking more to my wife in some respects than she was myself because I suppose she thought that as a woman my wife would have very great concerns about my own potential future, or lack of it, because of this, but for myself I suddenly had visions of a colostomy bag, and remembered that my cousin had had the same problem about twenty years ago. 

And how were your feelings when you left the room?

My feelings were one of almost morbid foreboding, I must be honest, and my wife was saying to me only last night that I was tending to look on the black side rather than on the good side. The plus factors obviously when one thinks about them are far more important than the down side. Had I not been caught in the screening process and had I not responded to it, the polyps wouldn't have been removed and within perhaps two to three years what is a potential problem now could have been a very serious one and life threatening.

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