Interview OV15

Age at interview: 55

Age at diagnosis: 50

Brief Outline: Ovarian cancer diagnosed in 1997 following frequent urination and feeling that all was not well. Treated by surgical removal of ovaries and womb. Recurrence treated with chemotherapy.

Background: Citizens Advice Bureau advisor; married; 2 adult children.

Was given a nice wig but preferred to wear a scarf or hat.

And then, the wig lady came round to fit me with a wig, and, and there was lots of choice' Because I, you know, I hadn't realised. I thought a wig was a thing that you put on your head and it was all hot and horrible. But there was lots of choice and she was brilliant, and she cut it and styled it to suit me. But whatever happened, however good that wig was, I didn't feel comfortable in the wig. 

You said you weren't comfortable with your wig. Did you go and get yourself a wig from somewhere else or did you wear hats ? What did you do?

No. I gave the' funnily enough I gave the wig away to a friend about three months ago who admired it at the time so I said 'okay if you like it you can have it'. I wore scarves. Well often I wore nothing. I tended to wear scarves because I thought people might be more comfortable with me in a scarf rather than as a bald head. 

So what I had was scarves. I had lots of scarves, probably about half a dozen scarves and sort of cover the top, and tie them round and have them hanging. And then in the winter I had - I've still got it - a really nice velvet, bright purple hat that just perched on the top of my head. It kept it warm. So yeah, and I managed with that.

Describes how chemotherapy frightened her and how it brought out the good in people.

And the fear. I mean I was so frightened about that, that I was almost sick. Just the not knowing, just the absolute fear of 'What are they going to do to me?' And knowing that while they're doing it, okay they're putting a fluid inside me which is making me better, but it's absolutely killing the system that my body's lived with all these years that has kept me well. And I know when the drip was going through and you can see the liquid coming down the tubes, it's poison. And to be' I thought about it like bleach. When I stick bleach in the sink and it cleans the sink or cleans the loo, that's what it felt like, going into my body. Like bleach. 

And the thing that I had to hang onto, because that would have been quite a destructive thought really, was that it is attacking the bad bits. It's attacking the bad bits. The good bits have got a chance to get good again. 

But the nurses on the wards were superb. They were so kind and I mean there were people on the wards hanging on to life, virtually hanging on there. But it wasn't a depressing ward, it wasn't a ward where you' There was a lightness about the ward, people were very kind towards each other. Even though it was kind of' I don't know, that's, they're the kind of sad things that make me look back and, it was almost bringing out the good in people. 

She could work on days when she felt well between chemotherapy treatments.

And I was really lucky with my business, because I'd got, I had some good customers who were prepared to wait until I was well to go back and work with them. But what I found I was able to do is, because I was being, having my treatment every three weeks, the first week I was useless for very much at all but during the second two weeks I was able to continue with my work. And that was good, I needed that.

Had an allergic reaction to the chemotherapy on her sixth treatment.

So the treatment went on for five times with no problem at all. On the sixth time, they'd put the stuff through my system to clean it out, and they'd just started to give me the chemotherapy treatment, carboplatin I think it was, and the nurse was telling me... I'd said to her, sort of just conversationally, 'Do you have any people who have a real problem about having the treatment when you insert the drip and things?' and she said, she was telling me about somebody who'd had a problem with their heart. I think she said a heart attack, I can't remember. 

And as she started' As the carboplatin started to go into my body, I started to think, 'Oh, I can't breathe properly'. And I was literally pushing myself out to try and breathe. And she looked at me and suddenly moved very quickly, and I'd had some kind of anabolic reaction, some kind of reaction to the treatment. And so I had to have something pumped into me to counteract that treatment. And she said, 'I can't give you any more'. So on my sixth treatment, I didn't have a sixth treatment because, whether my body was actually rejecting the treatment, which is what the oncologist said had happened. 

Having cancer taught her to value the important things in life.

Up until then, basically, I'd had a very good job, I had a successful business, a career, I had money in the bank, I could change my car every year if I wanted. I had all the material things that I thought life was about, basically. And physically up until then I had always been very fit and very well. So to a certain extent I suppose what I'd done is taken life very much for granted. And because I was forced to rest, because I didn't through certain times have the energy to do very much more than just rest, it started me to think a whole lot more deeply about, I suppose, the meaning of life. 

And I think one of the hardest things that I had to get my head round was the fact that, you know, one of the things that is guaranteed for all of us is that we will die. And the other thing was, realising that, you know, so many people are living, they're alive, but it seemed to me they weren't really living. And so the whole of that, for me, was turned completely upside down, and I recognised that every moment I had was of great value. 

I know if you ask my mum, if you ask my friends, that I'm a more compassionate and loving person as a result of that experience. The whole of that experience, has given me a greater sense of what really has a value in life. And for that I am grateful. As mad as that sounds, had I not gone through that experience, I probably wouldn't have come out feeling, you know, when I see a sunset or when I see new flowers coming, I'm like, 'Wow'. You know, that's what's important to me now.  

Found it hard to deal with other people's emotional reactions to her illness.

And the hardest, one of the hardest parts was, was seeing pain on other people's faces. I found that really, really difficult, and I got to the point where, I mean people would stop me in the street and say, 'How are you?' and 'I've heard about it', and there would be such a look of pity on their faces for me. That was one of the really hard things I had to cope with. And I got very, I know I got very blas' with it, because I wouldn't say, like 'I've got cancer', or 'the cancer's come back', I would say 'I'm having chemo', because it was a kind of lighter way of describing the problem. 

Sad stories of other people's experiences were unhelpful.

And I also remember a friend saying to me, 'You know, when you've had cancer, don't talk, talk to people who've been there and come through it. You need to be, you know, mixing with people who are positive'. Because there's always somebody, I found, who could, who would start to talk to you about it, and insist on telling you about somebody they know who was no longer around as a result of it. And I recognised in me that, you know, that wasn't very good at all for my future outlook.  

Felt uncomfortable about planning her life more than a few months ahead.

How do you view your future?

On a much shorter timescale than I used to. I know when after my chemo my husband would say, 'Right, let's book a holiday, let's book a holiday', and if he booked a holiday that was further away than like two months, it was like, 'no', I just didn't want to know. So my timescale has over those years lengthened again but it's not that big. If you said 'how far, how far have I planned or do I go?' Christmas would feel comfortable. So that's what' eight months, comfortable. Now, because we are having a lifestyle change in moving house, if maybe two years ago I wouldn't have even considered it. So yeah, my, my length of time planning is much shorter than it was. But I'm back to planning. It used to be quite frightening, that did, the thought of somebody enthusiastically saying, 'Let's do this in six months' time,' and me thinking, 'I don't want to think about that. And I know I'm alright, why am I not thinking about that?' 

Describes how counselling helped her.

And I rang up and said 'Can I come and talk to you? Maybe I need some counselling?' And I think we had about four or five sessions. It was really good. It really' Going from feeling like' Because I'm a, you know, I've done some training in counselling so I've done some counselling and I'm thinking like, 'Why am I having this?' But after about the fourth or fifth session I could really start to feel the benefits of having somebody completely outside of my family, friends, people who care, to say 'This is how I really feel'. Because it's very isolating. I mean, it does make you' Well, you know, how do they know? I never ever felt, 'Why me?' That didn't come into it, somehow. But very much feeling sometimes of, like a sadness when I saw people, you know, I had no hair and, whatever' 

So it does give you an isolated feeling. Who can you really say, 'I'm scared stiff really, I'm putting this brave face on but inside there's a little me that's petrified', but with the counselling I was able to do that. And get an understanding of why my husband wasn't saying how he felt, you know, that kind of helped me to work through in my mind what was going on there. 

Her husband found it difficult to show his feelings or talk about his fears.

How did your husband react to your diagnosis?

He was strange. He's not a feely-feely. He's' and he has a difficulty expressing his emotions anyway. I can remember waking up in the hospital after the op, and he was there. And his face was there but he was as white as a sheet. And he didn't really say anything. And he didn't get stressed. He'd say, you know, when I came home, like the reality of what was going on, and he'd say, 'You're gonna be alright, you're gonna be alright', as if it was like, you know, 'Of course you're gonna be alright'. And I thought, and he' he found it very hard to say like, 'I'm scared'. I can remember waking - middle of the nights are the worst - dark nights, in the day, I don't know, but there's something about waking up at one o'clock in the morning and then three o'clock in the morning and then five o'clock in the morning. I can remember crying, I can remember him waking up and holding me while I cried. He probably sneakily cried without showing me that he was crying or... It was almost like he didn't want to talk about it, he didn't want to say how frightened he was.