Interview OV40

Age at interview: 43

Age at diagnosis: 41

Brief Outline: Ovarian cancer diagnosed in 2001 following urinary incontinence and abdominal bloating. Treated by surgical removal of ovaries and womb followed by chemotherapy.

Background: Doctor's receptionist, divorced, three children of which two adult.

A chemotherapy treatment was postponed because blood tests showed she had not recovered enough...

In the meantime I was due to go back in every 3 weeks to have chemotherapy. When my first 3 weeks came up I had my bloods tested at the local surgery on the Monday ready to go to hospital on the Wednesday. But the first session I wasn't allowed to go because the platelets in my blood hadn't risen high enough. So I was quite disappointed in this because I thought I was a failure, couldn't have my treatment, really wanted just to get through the 7, or the 6 treatments. However the next week my blood was up so they took me in the following week.

Could not do all that she could before her illness because she tired easily and needed more rest.

I do find I tire very easily. I couldn't spend a whole day shopping or anything like that because I would suffer for it. When I'm tired I just decide 'right okay, I'm going to bed this afternoon' and I go to bed and I just spend a couple of hours in my bed or 3 hours in my bed, whatever it takes. Or I find I'm not physically able to do the things I used to do, you know, I don't have the same strength. But then I think, well, you know, you just got to go with what you have, so, I do find that quite hard to, I mean it's not a big disability, but it is, I find it hard when I used to, I mean I was a sporty person when I was younger, but I couldn't do any of that now.

Having cancer has taught her to only do what she wants to do.

And since then I have lived life to the full, I have done each day as I wanted to do something. I don't, I don't go to plans, somebody says 'come out and do something', I go if I want to. If I don't want to go, I don't go, I please myself, I do what I want to do. Makes you appreciate life is not, you know, this is not a trial, this is life, you've got to go for what you have.

I don't stick to routines, I'm not washing day Monday, baking day Tuesday, I'm not that type of person. I now decide when I get up in the morning, if I want to go and do something, I do it. If I don't want to do it, I don't do it. And that's exactly how I look at life, and I just live each day as it comes and enjoy myself.

Felt deformed to have no navel after her hysterectomy.

I have no navel, which I find quite horrendous, you know. I must, it must feel like somebody that has breast cancer that loses a breast, as much as you think your navel doesn't mean a lot, it does if you don't have it. You know, it is quite strange to have no navel. But that's just, I mean it doesn't matter, I can live without it, but that's like a deformity to me, you know.

Thought that surgical changes to her vagina would make having sex difficult, but it felt normal...

After I had my treatment I was, at first I was told they were going to leave the cervix. And then I was told that the cervix had been taken away, so I wouldn't have to have any more smear tests or anything. But then, not really being a medical person I didn't quite know what was going to happen then if I did have sexual intercourse, because would the vaginal channel be big enough, for one thing, or would I tear? Or I didn't know what was at the end of it. But I was told that, yes it would, it was quite sufficient, it would be long enough to take the length of a penis, if you see what I mean.  

And the first time I was a wee bit wary of it because I was scared that I was going to burst or, you know, it would be to the end and I kept asking, 'What does it feel like to you? Do you feel you've come to a barrier or something?' But I mean you don't, you just feel normal, to them, you know, to the male. They didn't find anything different about it. It's just in your mind you're expecting like the finger of a glove, that you come to the point at the end of it and you think, 'oh it doesn't go any further', it doesn't work like that. So you do have plenty of space, but then I didn't know that, I was quite, quite unsure of what they had done.  

Became bankrupt following marital breakdown, worked the maximum hours per week allowed while...

I've lost a lot of income. I was made bankrupt in the beginning of the year, well 2 years a year back now, from April, through financial problems that my husband and I had. Basically he was in and out of work a lot in the end. He was a very professional man to begin with. Alcohol got the better of him, started taking out loans, all this had to be paid back, which didn't work. We had a trust deed signed because he wasn't, he gave up work while I was ill, to supposedly look after me, but it didn't quite work like that. And once I got back on my feet a year after I was ill I started to, the solicitors rang me about this trust deed. And he had also left me with quite a bit of debt when he left in the November, and a solicitor suggested that I go down the lines of bankruptcy, so I was made bankrupt in April last year.

I do 3 hours therapeutic work but I possibly could do more work, but, the financial situation I'm in is, I'm on disability and I don't get any maintenance, so I'm on benefits and I'm allowed to earn a certain amount a week which covers my 3 hours, so if I go and do more work that then puts everything else in jeopardy. And I know I'm not able to do like, so 16 hours work, which I would have to do, but I can't, I don't do that, so I'm still doing 3 hours therapeutic work.

Her nine-year-old daughter wrote her a poem on learning the diagnosis.

After the third session of chemotherapy I went home to my own family. My daughter wasn't aware at this point but she, prior to having my hair cut off I was washing my hair and my daughter was there with me and my hair was floating in the sink, and she asked what was wrong. So I had to tell her. She was only 9. Her way to deal with it was she wrote me a poem, which was a quite touching poem. But she came, she came round to thinking, she didn't, she didn't look on it as death, she knew what chemotherapy was because of some of the programmes she'd watched, but I basically said I had cancer. So she didn't really relate too much with the cancer but knew that I was ill.  

She was a very intelligent 9 year old, and she ran outside and took off up the lane, didn't want to know me, didn't want to speak to anybody, and then about an hour later she came back and she handed me this poem she'd written. Which was very, very touching, but it just explained exactly how she felt. Since then I haven't hidden anything from her. But it yeah, the hardest point was telling my 9 year old daughter. You know, but we never ever, no she did, I think she maybe did ask me was I going to die, and I think I had said, 'Well, hopefully not, I intend to fight it', you know or 'I intend to be here'.  

Her husband, parents and brothers cried with her on learning the diagnosis.

First person I wanted in was my parents, which I telephoned. They both came in but I knew my husband would have to meet them in reception because my father wouldn't cope with it. So they came in and we all had a cry as a family and I was determined that I would have to face what was coming and I was going to get through it.  

I have 2 brothers, and the first time they came in we were all sitting crying and I'd never seen my brothers cry before and that was very hard. But once you get through all that stages, I think you get stronger for it and you know how to talk about it. It's that initial, 'lets talk about it', don't know what to say, they don't know how to approach you, they don't, they don't want to cry in front of you because they're embarrassed, but I think if you give them that lead, 'lets cry', and then it really does open them up and we can do that before you start to talk about it. Well that's how I felt it helped me, but '

Hearing the stories of bereaved relatives at a self-help group meeting was depressing.

When I got there there was one lady sitting in tears because she'd lost her husband a year before that, and another lady that was there, she was, her, she'd had relatives with cancer. Now I was a depressive person anyway and I really couldn't cope with somebody sitting in tears for their husband or a relative because I was the angry person that had had it. And I had sort of moved on from that stage and I thought, 'if I get involved with this I'm going to get more depressed'. So I sort of very kindly said, 'Look I'll come along, I'll talk to anybody that's got cancer that wants to know how I went through it' (i.e. I mean this sort of programme is ideal for me) 'but I really don't need a weekly thing or a monthly thing where I've got a lot of people sitting crying', because I've got to keep my strength up, I've got to keep positive'. And I still believe I've got to keep positive.  

So it, the cancer group at that point wasn't any use for me 18 months on. Had it happened 4 or 5 months into it, yes, I might have been more interested but not, I'd come through the worst stages, if you see what I mean, and I needed to be looking to the future, not mopping up tears and things for other people. I mean I could quite understand this woman being upset, but I had to look at it from the different angle, I was the patient not the relative. So it wasn't really meant for me, I had to move on from that.