Interview OV39

Age at interview: 41

Age at diagnosis: 35

Brief Outline: Ovarian cancer diagnosed in 1997 following abdominal pain, frequent urination, vaginal bleeding, fainting fit, and rash. Treated by surgical removal of ovaries and womb followed by chemotherapy.

Background: University administrator; married; two children.

Felt her diagnosis could have been delivered at a better time and place.

I think the only thing that I would, thought could have been handled maybe slightly more sensitively was the way I was told my diagnosis. I was told, obviously the curtains were drawn round my bed, I was told in the ward by the consultant. I mean, I know I had taken things all very matter of factly but, that was hard because obviously it's not a private place, there are other people round about. And I seem to recall the only time that I ever thought, 'Why me?' was when the lady in the next bed was being told that, 'It's all right dear, it was just fibroids' and I think that could have been handled a bit better. I think people could have been taken away out of the ward to be told the results and I found that upsetting. But I think all the professionals I've been involved with have been first rate, very busy people, first rate.

Were you alone when they gave you the diagnosis?

I was yes. My husband was working away from home. We didn't know when I was going to be told the diagnosis, it was just part of the ward round, so there was no forewarning that I needed somebody to be with me.  

Recovered quickly from surgery and avoided strenuous activity by getting her mother to help with...

So was the surgery fairly straight forward? How long did it take you to recover?  

I didn't take long at all to recover from the surgery, in fact I was sitting cross legged on my bed after two days, which I think is pretty good. I don't think many people are as lucky as that. I had no real problems at all. I'm making it sound like I sailed through everything, I really didn't I must have, I must be very quick to heal but no problems. 

But you were in hospital for over two weeks?

I was in the main hospital for two weeks and then I was discharged to the local country hospital for convalescence. So probably about a month, and of course once you get back you're not supposed to lift or do anything. But I was very fortunate I had my mother here to help, so she was doing all the household chores and lifting the baby and stuff. I think that was the hardest bit, 'cause I couldn't really play with my child as much as I wanted to, I had to always watch.

Asked her surgeon to remove any affected organs during her operation rather than just taking a...

I went back into hospital, they told me they were going to do a biopsy and I said, 'I didn't really want a biopsy, if they were going to go in and they found something I'd rather they did whatever they had to do then, just take anything that I could live without out and just get on with it'. So basically that's what happened. I had a total hysterectomy which removed everything, ovaries, everything.  

Refused to take part in a follow-up trial in which she would not know if her CA125 level rose.

Certainly I was asked to go on a trial later on, a follow-up trial to do with the CA125 marker, and I think the trial was basically, not telling women what the CA125 marker was.

Oh yes I've heard about that one.

And I actually refused to do that one. I thought I would be the kind of person who would not be happy not knowing what the CA125 marker was. And I mean I was, I like to help out whenever I can, the hospital in any way, and I would be quite keen to do it, but knowing the kind of person I am, I thought no, I'm not going to be able to cope with that. I need the reassurance of my, of my count.

Feels less secure having only annual check-ups, but knows she can return if necessary.

I had six doses of chemotherapy and then went on to monthly check-ups at the local clinic. Then I think it went up to two monthly, then three monthly, four monthly, six monthly and now I'm onto yearly check ups. This is the first year that I've been put onto yearly check-ups and I must admit I'm not entirely comfortable with it, and that sounds terrible. 

But I think it's the security of knowing that every six months you're getting checked up has all been taken away from me suddenly, and I didn't realise I'd relied on it quite so much. But I know that if there is a problem I can phone up and they will see me, but this is going to sound very strange, but I think the further, you know, the longer away from diagnosis I am the more scared I am in some ways that, when's it going to come back? 

Finds her check-ups reassuring, but has to wait for the results of her CA125 tests.

Each check-up you see the consultant or one of his juniors. They usually take a blood sample to start with, then you will be given an examination, that is an internal examination. Which at first I was very embarrassed about, I didn't like it to start with but it's become so much part of the ritual now that I don't think anything about it. They will also obviously feel your tummy, ask you how you're doing, ask if you've got any questions, and usually I, usually have, I've usually got something that I want to ask about.

I find them quite reassuring really the check-ups. The doctors are very pleasant and the nurses are nice too. The worst bit about it is actually having to wait for your blood test results. They take about a fortnight before they are reported back to the GP, and I think that's the worst part of it because, although I know that the CA125 is only an indicator, you do latch onto these figures to tell you that you're all right.  

Sampled aromatherapy and yoga when they were provided free but couldn't afford to pay to have...

Have you thought about or used any complementary or alternative remedies or anything like that?

I would love to say that I have, but I haven't. 

My husband was working away from home when I was diagnosed with cancer, and gave up his work to come home. He's a teacher and he went on to be a supply teacher back here. And that meant that his, our income wasn't steady by any means, so things like complementary therapies are expensive, and  much as I would have loved to have taken advantage of them, we just couldn't afford to with two small children. I do sample them when I get a chance, I've had, I've had a little bit of aromatherapy, but not on a regular basis. I do appreciate the benefits of them, I did do a course of yoga that my local support group put on for a while but apart from that...

Had not discussed with her husband whether to have more children but was grateful she had two.

Had you finished your family or were you planning more?

We hadn't really discussed it. I probably would have liked more. I think my husband thought one was enough but, I think probably the news wasn't so devastating for me as for somebody who maybe hadn't started their family. I had two healthy children and I was just thankful that I had those, and that I'd had them before anything happened, certainly wouldn't be without them. I don't know how I would have reacted had I not had any children, I think it would have been totally different. But no, I'm quite happy with the two that I've got.

Health professionals had not talked about sexual issues in relation to her treatment.

Would you be prepared to say if you've had any physical problems in your relationship as a result?

None at all. That wasn't affected in any way whatsoever. But I know it's an area that's not addressed very often. I distinctly remember in the hospital, the doctors asking one seventy-eight year old lady down there if she was still having sexual relations, but they didn't ask me, and they didn't, they didn't cover any psychosexual issues at all. Which is quite a big omission really, because for some people they might not be as fortunate as me and it could be a huge problem, but fortunately it's not been for me.

Started a local self-help group because she felt isolated and wanted to give something in return...

When I came out of hospital to start with I was getting support from the Macmillan social worker, and I quickly realised that apart from that I was very isolated. In hospital you're quite cosseted, you feel looked after, you have people to talk to if you're not sure what this ache or pain is, or what this feeling is. But when you're out in the wider world the people you come across who have ovarian cancer, or even who you know who have cancer are very limited. People don't tend to go round wearing, as somebody said to me, wearing a badge saying 'I've had cancer'. You don't know. And your family can't really empathise with how you're feeling because they haven't been through it, they don't know what you're experiencing and, you know, through, through talking this over with my social worker I realised that probably there was a need for something in the local area and nobody seemed to be getting up off their backsides and organising anything.  

So, with his help, myself and another lady decided to meet up, and basically through this meeting opened to anybody else who was interested, and we were amazed at the response. I think the group took off with great gusto and at some points we were having forty people coming along to a meeting, and the benefits are tremendous.