Interview 26

Age at interview: 75

Age at diagnosis: 74

Brief Outline: Diagnosed with colorectal cancer in 2002, followed by surgery and chemotherapy.

Background: Orthoptist (retired), widow, 4 children

She found it hard to tell her children about her illness.

Eventually, I accepted it, but I think the worst part of my illness was having to tell my children. I have four grown up children and nine grandchildren varying from twenty-seven to four. This was the worst thing, I couldn't sleep all night. I can't really particularly remember what he said when he told me I had cancer but I can remember thinking how can I tell the children and I think... 

I can't quite remember but I think my son phoned me one day when I was crying. I was having a bad day and so he said, 'Oh, what's the matter?' And I said, 'I have to tell you, I've got cancer'. And he just said, 'Oh'. I can't remember what he said but he didn't cry or anything. He's now aged forty. So I said, 'Well can you break it gently to the rest of the family?' and having four children was a great help because they all came to my house. One from Sweden, one from Cornwall and they were able to discuss the problem and come to terms with it in their own way and so when they came to see me they were sort of cool, calm and collected. 

I was also worried about the children thinking that as mother had it, it would be hereditary so I made it quite clear that this is not a hereditary illness, so that was one of the important things about the illness.

Describes the different cultures on the wards she was in and suggests that the 'tender loving...

I think from being in this large teaching hospital where the nurses did, I think the first year they did it at university, I felt they were probably taught how to give injections and do blood pressures, but they were not taught that patients are very vulnerable. Everything they say goes straight to your heart so when they say things like, 'the cancer's spread', you get very, very upset, so I think they really should be taught that patients are very vulnerable and they need to be very careful in what they say, and that we need a lot of affection and we need tender loving care almost as much as we need the drugs. 

And I think this is something. Instead of the nurses coming and talking; one ward, they were wonderful, they were angels. They would come and talk to us but the last ward I was in when they weren't busy they were all just sitting round at the desk chatting, but they didn't come and talk to us. They didn't treat us as patients. I used to say I'm just bed number six, and they didn't, even the surgeon didn't sit down beside me. If only somebody had sat beside me and explained what was happening or even held my hand. There's no contact at all, there's very little, even eye contact. 

A whole group came round the bed and they didn't even say who they were so you had about half a dozen or more, standing round while they discussed you and you were just bed number six, you weren't a person, so I think the human side of medicine is lacking.

Another thing, I think cleanliness is appalling. I got the MRSA, which was... I wasn't at all surprised because they didn't wash their hands very often. They would put rubber gloves on now and again but even the doctors would come and feel my tummy with the MRSA in the wound, they'd go and do the same thing to the next patient.
 

Thinks the district nurses are absolutely wonderful.

But the district nurses I'll praise. District nurses are absolute angels. I had a lovely one and she used to come everyday to do the dressings at home and quite different [to the hospital nurses]. She had two pieces. She undid a pack, and one she put all the dirties on and one had all the clean and she washed her hands, and she is lovely. 

She still comes. She says she loves coming because I'm always cheerful and we have a nice little chat. I don't need her now because I don't have dressings, but she'll come or ring me about every couple of weeks. So the district nurses I think are absolutely wonderful.

Illness has made her appreciate her life, her family and friends and she is determined to enjoy...

But the good thing that has come out of it is that it was like a wake up call, life doesn't go on forever. Apart from cancer I'm getting old. I can't run about with children the way I used to and take them to museums and things. But the good thing is I have a lot of friends because I have so many outside interests. 

I was surprised at how very loving and kind they were. I had, I suppose in the first instance, I had about sixty cards from various people, all so loving and kind and so this has made me appreciate life and made me appreciate my family and friends and so this the good side and I'm determined to enjoy every moment of the life that I've got, which I do. 

I love being with the children and I love my garden, I like gardening. I can do a bit at a time. So there is some good out of evil, you know, you've got to make it the way you want it to.

"Doctors and nurses should recognise that patients in hospital are vulnerable".

Have you got any suggestions about how staff training can improve those things that you've mentioned?

Oh yes. I think they must as I've said, they must be taught that each patient is an individual. They're very vulnerable. They're very sensitive and what they want is kindness. They don't want to hear, 'Oh I'm too busy to bring you a bed pan'.  Or, 'Get up and go you'll be alright'. I mean they kept saying, 'You can go to the toilet'. And I said, 'Well look, I can hardly walk, I will wet myself by the time I get there'. Well you shouldn't have to say this. I mean patients know whether they can get out of bed and get to the toilet in time, but to be told, 'Get up and go'. And having to explain, well I'm afraid I can't. They should know this; they should know each patient and their capabilities.

You also put a lot of stress on the importance of being listened to.

Oh yes, yes. They don't listen at all they just tell you what to do, they just dictate really. You're not a person, you have no points of view, you don't seem to have any feelings as far as they're concerned. You've just got cancer and they'll do this and they'll do that and that's it.

So really what you're saying is apart from paying attention to the physical treatment and consequences of that, to look at the person as an individual with emotions and needs.

Absolutely, absolutely. We... although in the old days nurses did, and so did doctors, I mean they'd sit by your bed. I mean, I remember when I had my appendix out when I was a teenager and they sat by the bed and told you what was going to happen and chattered away but now they don't and I've seen, oh masses of doctors during this year's illness and I don't think one of them has sat and talked to me as a person.