Interview 17

Age at interview: 54

Age at diagnosis: 52

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

She explains why she feels her life is now better than ever.

My life now is, is better than it's ever been. I don't work, I didn't go back to work. I don't miss it, I've adjusted, I've felt because I've had quite a lot of problems with coming off of the laxatives, I could work part time now, things are a lot, lot better.  I've had a pretty good year this year.

But I've decided not to because I'm a lot happier, I, I'm not so stressed, I don't get stressed really anymore because I feel it's just, it's just not worth it.

We're not so well off, not nearly so well off and we've certainly had to tighten our belts but, I feel, I just feel a lot more sort of serene, and certainly I've, I've come to realise what is important in life. Certainly you realise that very early on. Friends, what friends and your family and I just feel a lot, a lot better for the experience.

It was, it was you know, I, I've been through the mill but I've come out. I feel a better person for it. Not necessarily stronger, I think I, in some ways I feel more vulnerable because I, I have been through quite a lot but I do, it's made me think a lot about what is important in life.

Things that I really, every day I try and incorporate something that um makes me feel glad to be alive and, whereas I would never make, make the time for that before. It was just a treadmill really and it was just you know, somewhere in years to come, you know I was going to maybe stop and breathe, but now this has actually forced me I am actually, I am actually doing that.

You know my marriage is stronger for it, for both of us having gone through this. And, really I would say it, it's been a completely positive experience. I can't actually really think of anything negative that in the end has come out of it at all.
 

Having seen a consultant once she was reluctant to go again.

The consultant surgeon examined me thoroughly and he said he couldn't find anything sinister and he wasn't bothered at that time but to, to come back later if the bleeding got worse or if I was concerned about it which is what happened.

I felt very well, I still had the bleeding but I felt very well, we had a wonderful holiday, came back. A few trips up to London, just generally got on with my life.

But then the bleeding really did get quite bad, it was every day, quite a lot of splashes in the pan and I was worried about it and my daughter said "You really ought to go back mum" and I was very nervous about going back and embarrassed because the consultant had said that there wasn't, he couldn't find anything wrong.

But, because she nagged me so much really I, I did go back, I made another appointment but I didn't go back straight away. I was offered an appointment straight away and I said "Oh, no, it's alright," you know. "It can wait a couple of months."

When I did see him finally, I'd had the symptoms for about a year and this time when he examined me he realised there was something wrong.
 

Explains how she became depressed after surgery.

I kept my spirits up, but after the operation I, I felt very low. Obviously I was weak from a loss of blood, and it was um, a major operation.

But I was amazed at how that fighting spirit had completely gone. I was so low mentally that I, I really felt that I could have just faded away, I had absolutely no fight in me at all. And I felt like that for the whole of my time in hospital. I felt very alone and very frightened, as though the whole world was against me.

And I was in a ward with mostly younger women who were in there for gall bladder problems and so forth. And um, I felt, you know, I'd had cancer and I'd had this big op, and there was nobody really to talk to about it.

There really wasn't the time to, certainly wasn't the time to speak to nurses about um how you were feeling emotionally, I didn't feel it was fair. And nobody sat by my bed and, and asked me, they, they really did not have the time at all, and I was only aware of one other person in the ward having cancer and he was quite a young boy, well he was very young, he was my son's age and I did talk to him, we were at opposite ends of the ward.

But I was moved fairly quickly to the, another one and there was nobody in that ward with cancer so I couldn't really even talk to another patient about it.
 

She needs a very high fibre diet that is difficult to maintain away from home.

I have, I have, I am on a very, very high fibre diet which does bring a few problems obviously. I have, I've had to go on a high fibre diet in order to get off laxatives. Its taken me an awfully long time, I was taking three different types of laxatives to begin with and obviously your bowel gets used to this and really it took me over two years to completely come off the laxatives.

And even now I still occasionally have to take a fybogel and that is with an awful lot of fibre. I have to have All Bran, high fibre bread, I have lots of fruit and vegetables. I never eat white bread, I don't have cakes or any of the things that I used to be able to eat, which I don't find a problem. That's the way I am you know, I just accept it. It's, it's a bit of a problem if I go away. It's alright if you're self-catering but if you're staying in a hotel or whatever and you can't get those foods then obviously you know it is a problem for me.
 

She was given a PCA but not told how to use it effectively.

You were given a choice for pain relief before you have the op. You could either have epidural or you could have a little machine and you're wired up to that, you had a button which you pressed when you felt pain and that was supposed to relieve the pain. Or you could have painkillers from the trolley.

I actually opted for the one where I thought I would be in control, that's pressing the button when I felt pain.

But in actual fact it didn't work for me, it probably worked a bit, I don't know how bad I would have been without it but that really was quite a bad experience because I was just told to press the button when I had pain and I kept on pressing the button and I still had a lot of pain.

And I can remember the man who was obviously in charge of pain control, I can remember him coming in and shouting at me and saying "You can't expect this to work if you keep on pressing that button. You're pressing it too often."

And I didn't actually say anything to him. It upset me a lot because I was, I was feeling so low and it was so soon after the operation. If it had been now I jolly would have, I would have shouted back at him and given him what for, because I'm that sort of person.

But you know, I realised at the time I didn't do it because I was feeling very weak and I wished really that I'd gone for pain-relieving tablets from the trolley.
 

A simple act of kindness on the part of a nurse helped her at a difficult time in hospital.

Well it was a very big ward, there were several wards within the ward all dealing with gut problems, not just cancer, gall bladder, all sorts of things and they were so busy, the staff, going backwards and forwards. It started so early in the morning, having to get people up sort of dealing with you know, having to give them bowls to, so that, I mean we were washing ourselves. I mean virtually from, from day two I was washing my own face and you know cleaning my teeth and so forth, which, which is good, it would be very easy to lie back and sort of you know just give into it otherwise, which was good.

But there really wasn't the time to, certainly wasn't the time to speak to nurses about um how you were feeling emotionally, I didn't feel it was fair. And nobody sat by my bed and, and asked me, they, they really did not have the time at all and I was only aware of one other person in the ward having cancer and he was quite a young boy, well he was very young, he was my son's age and I did talk to him, we were at opposite ends of the ward.

But I was moved fairly quickly to the, another one and there was nobody in that ward with cancer so I couldn't really even talk to another patient about it.

So really, I just remember one nurse who had come over from South Africa for three months and she was really the only one that I felt at the time showed me really great kindness. She actually washed my legs and my feet, which was wonderful and just that very simple human touch and that very simple kindness of doing that made me feel so much better.
 

Her consultant's way of breaking the news helped her feel confident about treatment.

About four days later when I went to see him I went in and sat down and he looked at me and he said "We've got a problem."

And I was actually very impressed with that because I immediately felt that I wasn't on my own in this and I said "Is it cancer?" and he said "Yes." And I asked him if it was operable and he said "Yes it is." He said "I'll tell you what I propose to do about it." And he told me.

I asked him if there were any alternatives, any other options and he looked me straight in the eye and he said "No."

And I completely trusted him, he was obviously very experienced and he made me feel that he was in it with me, which obviously, you know, I didn't feel alone. And, and so I didn't question it, I just decided there and then to go completely with it and to do what he said.

And I've never had cause to regret that. I still feel that that was the best option and, and I'm glad I went for it although I had to have major surgery.
 

After surgery she had to put her own emotional needs before those of her family.

After the operation I couldn't be brave for them any more I really just couldn't. I, I just, some of the time although I needed support and I needed the help and it was wonderful to see the way my husband looked after me.

I often felt I just wanted to crawl away and lick my wounds and be on my own and just, just deal with it on my own because I, I just couldn't, I couldn't actually cope with, but my children really dealt with it very well.

My husband, although he was dealing with it well and looking after me and showing me lots of love and support, he did find it quite difficult. He wanted to cook me lovely meals and I knew I couldn't cope with them and you know I think I found it very difficult to say "Look you know, don't cook me that I just, I just cannot eat it."

I didn't, I didn't want to upset him, but at the same time I, I knew that I really had to think about myself and my own needs in all sorts of ways and really that they just, just had to deal with any problems that they had, really they now had to deal with it on their own.

It was quite a long time before I felt able to cope with other people's feelings about my cancer.
 

Her consultant's way of breaking the news helped her feel confident about treatment.

About four days later when I went to see him I went in and sat down and he looked at me and said "We've got a problem."

And I was actually very impressed with that because I immediately felt that I wasn't on my own in this and I said "Is it cancer?" and he said "Yes." And I asked him if it was operable and he said "Yes it is." He said "I'll tell you what I propose to do about it." And he told me.

I asked him if there were any alternatives, any other options and he looked me straight in the eye and he said "No."

And I completely trusted him, he was obviously very experienced and he made me feel that he was in it with me, which obviously, you know, I didn't feel alone. And, and so I didn't question it, I just decided there and then to go completely with it and to do what he said. 

And I've never had cause to regret that. I still feel that that was the best option and, and I'm glad I went for it although I had to have major surgery.

Maintains that people have the right to know about the possible side effects of radiotherapy.

I really wasn't, I really wasn't told a, a great deal about it and I didn't know what questions to ask really.

I've read about it since then. I've read quite a lot as time's gone on, and I've realised you know that I could have had more problems. It hasn't affected my sex life for instance which would have been a bitter pill to swallow. I mean I realise I'm very lucky that I haven't had any, any damage because obviously everything is so very close together down there. So, I've been very lucky.

Looking back, with the benefit of what you know now, do you think they should have told you about possible long-term damage from radiotherapy in the pelvic area?

Yes, I think they should have done. It wouldn't have made any difference to me, I still would have gone ahead with it. I was really convinced that that was the right treatment, it was giving me the best possible chance and so I would have gone along with it because I just wanted to live.

So I would have gone ahead with it but yes, I think, I think really you should be made aware of this. Yes, I think so. It, it may be that some people would be frightened and perhaps wouldn't want to go ahead with the radiotherapy and that would be an awful shame but I do think it, it is your right to know, to know these things, yes.