Interview 32

Age at interview: 70

Age at diagnosis: 68

Brief Outline: Diagnosed with colorectal cancer 1999. Received radiotherapy, surgery, temporary ileostomy and chemotherapy.

He felt his dignity was not considered when he was given his diagnosis.

And he referred me to the hospital for, for investigation, which turned out to be the sigmoidoscopy. Which is embarrassing but it's not painful. The only thing that I would complain about was that I was told there and then, just sitting on the, on, on the couch. You know, it was all over, just finished, swing your legs round, "Just hang on a minute, I have to tell you, you have a tumour."

How did you feel about being told in that way, you know, before you even had a chance to get dressed and get yourself together?

Well I think it, it came as a total shock, it was a little bit more afterwards that I felt, I'm sure I could have been told better, in, in a better way. And being able to sort of ask questions you know. I was just sort of dumbfounded. You know, "you, you, you've got a tumour, you need an operation. Thank you very much. Nurse take him away, help him put his trousers back on again and, and get him out of here." That's how I felt at the time. And I felt it was very poor.

If I could have cleaned myself up, got dressed, sat down, perhaps had a cup of tea with the doctor or the nurse telling me then, a bit more gently, not so, not so brutally, it would have been a lot better.
 

He describes his colonoscopy.

I had to go to the hospital which was an outpatients department. I'm trying to remember, I think, in fact I'm sure, that I'd had to take some medication beforehand to clear the bowel out. So I'd sort of spent I think 12 hours without food and most of that time, popping backwards and forwards to the loo after you'd taken these powders to clear you out.

You went to the, the hospital, everybody was very nice and kind. You were shown into a room, I think it was only, just simply trousers and underpants that had to come off. And you climbed up on to the, sorry, and you climbed up on to the table on to one side, up with your knees. They told you that they were going to insert a tube in, into your rectum and that it would be a bit uncomfortable. Which it was. It was uncomfortable, but it wasn't painful.

They then sort of inflate you a little bit and, and that is probably the worst part of it because it's a, it sounds very much like blowing up a tyre on a bicycle! You can hear the air being pumped in and you get a distinct urge to, to want to go to the toilet but you know, you know you can't and you know you're not likely to either. And it's all over in a few minutes. 

Do they give you any, did they give you anything to relax you or?

No. No.

No. No medication.

No, no, no medication, no, no. No medication, no the only thing that was used apart from the, the instrument which, which I asked to see, I said "Can I have a look at it?" to see what it is and they showed it me willingly.

What is it like?

What did it look like? It looked like a piece of garden hose.
 

Describes the attacks of diarrhoea he experienced after his ileostomy was reversed.

It was one of the things that wasn't explained in great detail to me, how horrendous I think is the word, things could be. It wasn't explained that you would get vicious attacks of diarrhoea, at fairly frequent intervals it was, to start off with it was sort of every six or seven days, I'd get this violent attack of diarrhoea and I would go to the toilet probably ten, fifteen, twenty times in, in the day or usually during the night.

And my tail end was decidedly sore, couldn't sit, couldn't lie on my back, it was, it was very painful. But it was over and done with and then I was alright for the next few days.

How long, how long did this period of adjustment last?

This period of adjustment, lasted probably something in the region of about six to nine months. And what was happening was that the incidence of these occurrences got further and further apart, and the severity got less and less.
 

Talks about the attacks of diarrhoea he experienced after his ileostomy was reversed.

It was one of the things that wasn't explained in great detail to me, how horrendous I think is the word, things could be. It wasn't explained that you would get vicious attacks of diarrhoea, at fairly frequent intervals it was, to start off with it was sort of every six or seven days, I'd get this violent attack of diarrhoea and I would go to the toilet probably ten, fifteen, twenty times in, in the day or usually during the night.

And my tail end was decidedly sore, couldn't sit, couldn't lie on my back, it was, it was very painful. But it was over and done with and then I was alright for the next few days.

How long, how long did this period of adjustment last?

This period of adjustment lasted probably something in the region of about six to nine months. And what was happening was that the incidence of these occurrences got further and further apart, and the severity got less and less.
 

He experienced panic when his stoma bled and he didn't know what to do.

The one thing that they didn't tell me, and it came as an almighty shock. I was in the shower, I was changing, I was in the shower, water was flooding over it, it was great and I caught the stoma, it must have been with my finger nail, and it bled profusely, and I was frightened.

Suddenly I was standing there and there was blood pouring down my leg, and of course, spreading all over the shower tray, which looked absolutely horrendous, I mean it wasn't, and I, I have to admit that I did panic a little bit.

It stopped probably within, I don't know, 30 seconds. What did I lose, probably a couple of thimble-fulls of blood but that was all. But at that moment in time it frightened me. Fortunately I grabbed a towel, dived for the telephone, phoned my friend, who came shooting round, because he's a near neighbour and said "Oh yes, don't worry about it, it'll stop."

And when he explained to me, it's perfectly obvious. The intestine is full of blood, full of veins because that's what it's doing, it's taking the food out of your intestine into your system. And you've exposed it, you've exposed it on, on the outside, it hasn't got a skin over it like, like the rest of your body has. And I'd just been a bit rough with it. I wasn't rough with it ever after that.
 

Knowing others with ileostomies helped him feel positive about his own.

The ileostomy didn't worry me at all. I've a mother-in-law who's been an ileostomist for probably 30 years now, and she's well on into old age, well over her 90s now. And she's managed successfully and also I've got a very good friend and neighbour, who has also been an ileostomist and I knew that he was more physically fit with his ileostomy than I was without one. So, I'd no fears about that at all. I was lucky, in that respect, that I had no fears because I knew about them.

If you didn't know anybody who had an ileostomy do you think it would have been a daunting prospect for you?

Yes, yes I think so. I think it would have been um, simply because in my opinion there is such an attitude towards people who have a stoma and have to wear a bag, for whatever reason it's sort of not accepted socially.

And it's ridiculous, totally and utterly ridiculous that is. You, you know you might as well having an ileostomy is in my opinion less of a stigma than having athlete's foot, and I would put it as simply as that.
 

Having known other people with ileostomies helped him feel positive about his own.

The ileostomy didn't worry me at all. I've a mother-in-law who's been an ileostomist for probably 30 years now, and she's well on into old age, well over her 90s now. And she's managed successfully and also I've got a very good friend and neighbour  who has also been an ileostomist and I knew that he was more physically fit with his ileostomy than I was without one. So, I'd no fears about that at all. I was lucky, in that respect, that I had no fears because I knew about them.

If you didn't know anybody who had an ileostomy do you think it would have been a daunting prospect for you?

Yes, yes I think so. I think it would have been simply because in my opinion there is such an attitude towards people who have a stoma and have to wear a bag, for whatever reason it's sort of not accepted socially.

And it's ridiculous, totally and utterly ridiculous that is. You, you know you might as well having an ileostomy is in my opinion less of a stigma than having athlete's foot, and I would put it as simply as that.
 

He went to his consultation well-prepared with questions.

As soon as I knew that I had got a tumour, fortunately I've got access to the local cancer support group because my wife had died from leukaemia a couple of years previously and we'd been members of the local cancer support group. 

Yeah, well it's, it's the Dudley Cancer Support Group and they've got a magnificent library there and I went in there and read everything I could find on, on bowel cancer. So by the time I came to see my consultant I, I had got a notebook with, with fifteen questions written down.

And he obviously caught sight of them because he just started at a) and went through to z) and finished and said "Have I answered all the questions you've got written down there?" Which in fact he had, and a lot more that I'd never thought of.

So in that respect I was very fortunate but I wanted to know. I wanted to know the details. I wanted to know what type of cancer it was, how far I'd got, what my survival rate was likely to be, how long I'd be in hospital, how long before I could drive, how I'd be affected, all these things. And I got straight answers from my consultant.
 

Having nursed his wife through chemotherapy he feared going through it himself.

I had experience of cancer in as much as my wife died a couple of years before my diagnosis. But hers was in fact leukaemia, she had multiple myeloma and she lived two and a half years after diagnosis. So in a way I was aware of cancer, I was aware of chemotherapy, I was aware of what was involved.

And when they said chemotherapy for me I was scared, I was, I, I was frightened. I didn't think I could take it because I saw what it did do to my wife because her chemo was obviously, although I didn't realise it when they said it to me, far more severe, far more, of much greater strength than my chemo.

And I did need a bit of counselling from the sister in the oncology unit. She sat me down and talked to me for half an hour. She reassured me that the chemo that I was going to get was not as severe a regime as that that my wife had had. That helped a lot.

She reassured me that I could stop it at any time and pick it up again at any time. She reassured me that they would take great care and not knock me about too much. And she was, she was lovely about it, she was great, yeah. You know she was young enough to be my daughter but she talked to me like my grandmother!