Interview OV03

Age at interview: 48

Age at diagnosis: 41

Brief Outline: Ovarian cancer diagnosed in 1996 following abdominal swelling and pain, and depression. Treated by surgical removal of ovaries and womb followed by chemotherapy.

Background: Nurse; married, 2 adult children.

Felt uncomfortable about her decision not to take part in a clinical trial.

And I did feel uncomfortable about turning down the offer of going on a trial. And maybe it was very selfish because a lot of people have said to me 'Well people have got to go on these trials because otherwise, you know, there's no benefit to others.' And I know that's true but at the time I had to think about myself and my family, and one of the things my son had said at the time was 'Whatever you do mum don't lose your hair,' and I just felt it, I don't think it's always taken on board that there are a lot of issues about how you're perceived that might be affected by the treatment. And for me that was just one of the issues really.

So were you able to discuss with your consultants about which drugs to have so that you wouldn't lose your hair?

With the carboplatin I didn't lose my hair, but if I'd gone on the trial and I'd chosen, I'd been chosen to go on the particular arm with the combination, I would have lost my hair. But they just felt it was because of that reason, but I just felt that first of all I'd been diagnosed very early and I didn't feel it was appropriate in my particular situation to, to be having both drugs. And also I felt that if it did come back I needed to have something in reserve if it returned, so. But I had three weeks to think about it.

Began taking HRT but stopped because she worried she might develop breast cancer.

And I think I drove the doctors mad, I must have asked about five different doctors' 'Is it going to be all right, me having HRT?' 'Is it going to bring the cancer back?' 'Is it going to be safe?' All sorts of things and they all said 'You must have it because of your bones' and at the time 'because of your heart.' But, and I took HRT for two years and then I got a very uneasy feeling, I just felt I'd been through cancer once and I didn't want to put myself in the firing line for having another form of cancer.

And so having met a rep at a [nursing] study day I went on, and he was telling me about another alternative, I went down that line rather than carrying on with the HRT. And that, that suited me fine, and I still take, it's just a food supplement, but I feel much happier taking that rather than running the risk of being on HRT, however small that is.

Found it hard to adjust her diet during treatment and found dietary advice for people with cancer conflicting and confusing.

I thought I probably ate fairly healthily but I do try and eat as much organic stuff as I can. A lot of people said to me at the time 'you ought to be eating this,' and 'you ought to be eating that.' But I found it quite a bit of a minefield really. I think going through chemotherapy is quite hard enough and for some people they find it quite easy to modify their diet and their lifestyle while they're having chemotherapy, but I just found it hard enough going through the treatment without making major modifications. And I think for some people the time for modification is after they've finished the treatment. But it can be quite difficult, you know, one paper says you should eat lots of vitamin C because it stops cancer, and then another research paper comes out and says 'Oh well Vitamin C causes cancer,' and you just don't know where to, which is right and which is wrong, so it can be very confusing.
 

Worked (as a nurse) when she could during her treatment, but afterwards found full-time work difficult and took a break.

I think I realised I needed a bit of a break actually from, because I'd tried to work through a lot of the time I was having treatment, I don't think that was a good idea at all. But there's an intense pressure on you to do really well and to cope really well, and if you say you're going to not work there was, it's difficult to describe but you feel very guilty if you're not, you know, working as hard as possible, especially in the NHS, people think, you know, this is all a cop-out that, you know, you're not working while you're having treatment. But I really feel that it would have been beneficial if I'd just taken six months out while I was having treatment.

It was difficult, there were a lot of problems in the surgery I was working at at the time, and you don't want to put people under more problems because you're ill, so. But after a while I just decided that I needed a bit of a break. And I took six months out.
 

Felt she had reached a stage where she could put her cancer experience behind her.

What about the future, how do you view that?

I view that more positively now. I think I've got to a stage where I can think I can put most of the experience behind me. I even feel that when I went for my check-up last time that maybe next time I go I'll say 'I don't want to be seen again' actually, which may seem a bit stupid but I find it very, very difficult sitting in an oncology clinic where there are a lot of people who are worse off than me, and I almost feel like a freak. You know.

So, and actually the other day I was walking through, I work near the screening department where they're doing a huge trial for ovarian cancer, and they had a video on about ovarian cancer which they show to the women while they're waiting to have their blood tests or their ultrasound. And I walked through and they were talking about ovarian cancer and I actually remember thinking to myself 'Well that's one thing I haven't got to worry about any more'. And I felt that was quite an important junction that I'd got to the point where I can actually put that behind me.

Now whether that's because I'm so involved in ovarian cancer anyway and actually its not such a big issue because the hospital where I'm working is where I've been treated, so going for a check-up is just like walking across the road to the outpatients department and it's not such a big issue.

Said that people don't know how to face you or what to say because they assume cancer means death.

Lots of people were watching me like a hawk, and a lot of people, as soon as I said I'd got cancer, they automatically put me into a box really, you could almost see them put me away in a box, because for a lot of people they think that if you've got cancer they equate it with death. And I certainly know that to a certain extent I felt that the same. And I know that when I was training as a nurse, very few people made it when they had cancer.

But people would walk to the other side of the road rather than speak to me, and all the things you hear about death are true if you've got cancer as well, because I think cancer has got a weight that no other disease has got - just the words terrify people. And people think they're going to catch it from you as well, and some people will just avoid you, and you certainly learn who's going to be your friends because they, they stick by you whatever the situation.  

Thinks family carers have a hard time because they have to take on new roles and have little support.

My husband's been a big support all the time. I think he finds it hard at times. When he goes out, not long ago he went out, and before he went out he said 'How are you?' and I said I was fine. And I said 'Why do you want to know?' And he said, 'Well whenever I go anywhere they always ask me how you are, but they never ask me how I am.' And I think it is hard on people who are looking after and supporting those who are ill, because they have almost a harder task than the people who are actually ill. And there's a tremendous amount of support for people who are ill but the people who are left picking up the pieces and the dealing with the housework and the children and the going to work and not sure how people are going to be from one day to the next, I think they have a very difficult task.

I think he's handled it really well, yes, I think he's been a great support and I think he's found it quite hard. He had no idea of the implications, I think it was quite, in a way I had some idea of what would be involved in everything. I knew that it was going to be surgery. I knew that cancer probably means chemotherapy, but I didn't realise at the time he had no idea that it was going to be any more than just an operation. And he found it quite difficult with the oncologist and finding that I needed all this treatment, and coping with the job and coping with the children as well. But I couldn't have managed without him.
 

During her chemotherapy she had great support from friends, but it dried up when she finished her treatment.

I did have a lot of support from lots of friends, and one of the ways that I found of coping was by talking. And if you tried to get through to us on the phone when I first came back from hospital and while I was having chemotherapy there was a problem, because if people phoned up I would just talk and talk and talk, and that was part of the way I found of coping with it.

And we had all sorts of people helping us, people offered to take me up for chemotherapy. People offered to cook meals, and I know I kept the florist in business locally because there were loads of bouquets of flowers kept arriving, that was really nice to feel that people were really supportive. And people from church were praying for me and there was a huge support network around me.

But I think when you get to the end of treatment people would say to me 'Oh so that's the end of it,' and they will assume that that was the end of the chapter and I was going to be OK and they would forget that there were endless check-ups and the endless concern that if you have a pain for more than a day you think that the cancer is coming back.
 

Gained support from hearing about, and making friends with, other ovarian cancer survivors.

Some people want to speak to other people who have been through the situation. Everybody wants to speak to somebody whose been through and come out the other side and is doing really well. And I think that gives everybody a real boost.

And there were one or two people that I don't, I've never met but I know about, and they were very, very important to me. And they were two people who were diagnosed fifteen years before I was diagnosed, and they were doing very well, and were perfectly well and not having any check-ups anymore.

At the time I got to know a lady who lived in the south of England and she'd had exactly the same surgery as me, she'd had exactly the same treatment and we were going through check-ups together and we would phone each other every day.  

People should not feel guilty about having days when they feel low and cannot be positive.

I think what people cannot stand is this feeling that you've got to be positive, and if you're not positive you're not going to make it. And I think you've got to be realistic that, you know, having been through that sort of treatment there are going to be times when, or however positive a person you are, there are going to be times when you're going to hit rock bottom and not to feel guilty that you feel bad and you're feeling low, because it's an abnormal situation. And I think sometimes because it's an abnormal situation people need a bit more support than they would normally accept if they were going through something else.