Diagnosed with colorectal cancer 1987. Under went surgery and temporary colostomy.
Felt she needed face to face contact to fill in information gaps about her colostomy.
Age at interview 53
Age at diagnosis 39
I was given a booklet which was entitled, if my memory serves me correctly “Living with a colostomy”, which was a general book which I think would have been used for people who were having a permanent colostomy or having a temporary colostomy, as mine was.
So that explained about a stoma care nurse and about the services that were available for taking away any items of bandages or dressings and that type of thing. That was a general booklet which was helpful.
I think at the time I would have rather that had been explained to me by a human being rather than a booklet. Because although I thought I was reasonably knowledgeable about bits and pieces of the body, I think it was, I would have preferred that had been face-to-face rather than diagrams in a booklet.
But I think perhaps I didn’t understand that stoma was the method of interrupting the, the colon and I think perhaps I didn’t understand the terminology, not that that really mattered all that much, but I don’t think I understood that. So I think I would have been grateful for a little bit more personal help at that stage.
I didn’t need bolstering up about the operation, I think I really needed an explanation of what was going to happen. That would have helped me more I think.
She needed advice about how to adapt her vegetarian diet after surgery.
Age at interview 53
Age at diagnosis 39
I would say that the legacy of my bowel cancer and cancer of the rectum is that I needed help with what to eat and probably the most difficult thing for me, through all of this, was eating in the early days when I was home. By early days I mean in the months afterwards because I’m a non-meat eater the food that I rely on, the food that I eat is high in fibre and I really needed lower fibre and perhaps higher calorie.
And of course when you’re shopping everything is aimed at being high fibre and low calorie, but really I needed the reverse.
And I, I then went to a dietician who helped me to beef-up my meals without making them higher in, in quantity and volume, it was just worth more. And she gave me several ideas for how I could beef-up my meals.
One example which was so simple and so effective I in fact, if I were having milk on cereals was to add powdered milk to my milk so that meant that I didn’t have to actually have an intake of the higher quantity of milk, but what I was taking in was of a higher value and it was worth more. So, that was one way, and if I was having a yoghurt, I would add some powdered milk to that, mix it in and it didn’t taste at all, and it wasn’t difficult.
I think, I think I was fairly well prepared for that, um I, I did not enjoy the days leading up to it and it isn’t a very pleasant experience, to have to clear ones system.
How do you do that?
I was given sachets of, of a, a liquid to mix, a drink to clear my system and that is, I think, uncomfortable as time goes on, but I think I was reasonably well prepared for that.
Everybody was very kind, I was very sore this time by the time I had cleared my system.
And then I had fluid pumped into my bowel from the outside, from the rectum and I remember feeling, putting, being moved on a, on a bed and tipped and I remember that being quite a peculiar feeling and feeling quite sort of sea sick I think. And feeling quite strange about that.
Is that so they could see different angles?
Yes, and I was shown the results of that I, they were told that I could see the results and I was, so I felt I was a bit more involved by then, and I was quite happy to see that. I mean I could see there was something misshapen and then I, just waited for the results of that. But that was done very quickly, I saw, I went back to my specialist very quickly after that.
Was it painful?
No, I think it was weird. I think the feeling was weird and I think I felt, I felt a little out of control when I was being moved on a bed and I felt a little bit strange, it was a bit like being on a fairground ride I think, but not a very pleasant one. I don’t think that bothered me particularly.
So, and I think again, when I think back to that period of my life I think I was quite glad that somebody was taking seriously something that was worrying me.