Interview OV26

Age at interview: 58

Age at diagnosis: 49

Brief Outline: Ovarian cancer diagnosed in 1993 after requesting a health check (no symptoms experienced). Treated by surgical removal of ovary and womb then chemotherapy. Recurrence after 10 years treated with chemotherapy.

Background: Retired keep fit instructor, married, two adult children.

Tried using the cold cap to prevent hair loss after chemotherapy.

I had six chemo first and I decided to use the icecap to try and save my hair, you know, they said I could try it and I thought 'well I am a swimmer, I swim every day and I wear a cap, surely, you know, I can wear, it's like a swimming cap with ice, I'd give it a go.' I used it twice, it was quite claustrophobic but I'm used to cold water so it didn't really affect me that much, the only thing was it was three quarters of an hour before and three quarters of an hour afterwards, so it added an extra hour and a half to a long long day, but more tedium than anything. 

But after twice they said 'if you start losing it you may as well give up". Well after the second time, about the third week, just before the chemo started, lumps, I had brushed my hair and it was all coming out so I thought 'well there's no point anymore', so it made it a lot easier. But people have had results with it apparently but I haven't met anyone who has yet so, try it by all means if you want a go but I can't recommend it because it didn't do any good to me but I wouldn't, I needed to try it just to '.

Spent her remission caring for her sick mother but after her cancer returned planned to travel round the world.

It just makes you look at life differently and unfortunately we didn't, well I say unfortunately, I wouldn't have given up caring for my mother, I had her at home for five years and she was five years in a home and I visited her at least once, twice a day because it was on the, it was round the corner, so she really did take over my life then but I had ten years with my mum, a lovely lady, and I think she spoilt me because she was ninety-six and everyone said 'oh your mother's lived this life, you've got longevity and you'll live forever' and I just assumed I'm going to live for a long time. 

So I'm going on Saturday, we're starting off going round the world, going to all the places and seeing friends and family, all the places my kids have already been to that we haven't and we've sponsored, so we're going off to do that, coming back and I actually arrive back I think on my birthday in August, and we shall stay up with the family for a couple of days, come back and I've got an appointment to see the oncologist Monday after we come back, and take it from there, ready I suppose for the next lot of chemo and go on from there.  
 

Frequent walks in the fresh sea air helped her to come to terms with her illness.

So after that I found the best, as I couldn't go and swim in the sea, I'd walk along, get up in the morning, go out, and I was getting up quite early because I was still feeling this, still feeling this constipation, getting up early and trying to go to toilet, so I'd walk along the beach and just the fresh air and the sound of the waves and pounding along that beach really really cleared my head again, you know, I'd got, it's been brilliant being down by the sea, it really has helped me. And I find exercise and walking, well I've always, everything for me is exercise, so exercise cures me and helps, so I've walked I felt, as I've been having the chemo, I've felt weaker in the fact that I can't jog anymore, I walk rather than jog but I pound along the beach, walk that way.  

I can go off in a dream when I'm walking there and I'm thinking miles ahead. Sometimes I get upset, sometimes I can cry there on the beach, you know, you can just sort of let it go. Other times I'm miles away, I'm dreaming I've won the lottery and I'm doing this and I'm doing that, or I'm just thinking over and over what life is and what's it all about, so for me that's my medicine.

Discussed within her family what to do with her body after her death.

And the other thing is I want to find out what to do with my body because I wanted to leave it. I have actually left it in my will to anatomy, to go to, to be recycled, rather. I'd much rather my body's used for somebody to experiment with or fine but they won't. I don't think they want it with it's disease and especially if it's malignant, so now I have to find out if there is any other way that I can dispose of it that way.

The oncologist said they may want, may be able to use some of my body tissues for Imperial Cancer so I've got to follow that up, and the other thing which most people are laughing at me is I went to see the Body Works where they do the plastination now that appeals to me. And whether it, I feel I would like to leave it to that, but I've got to ask my kids what they feel like first, I mean they've got to live with it haven't they? So that's something, and my husband. It's something that's not going to cause any problem, it's got to be easy for them because obviously it's going to be a sad time so I hope I hope, well I shall take, do, I shall go into this during my next chemo, when I've got time, and see if I can come up with something. 

If not it's where my kids want me to bury it and whether it's hopeful or whether it's cremated. They suggested I did a parachute jump and I want to do another one but they will cremate me and put my ashes in an urn and have the plane come over the end of the [town] pier and they'll drop me off into the sea, but I would like to be with the dolphins, so I don't know, I don't know what's going to happen, we'll see what happens at the time.

Describes her concerns about telling her grown-up sons that her cancer had returned and she may not live much longer.

I could tell my niece but I thought 'What do I tell my boys? Do I just say 'oh my cancer's come back' or 'I'm not too good' or I don't know what, or do I spell it out to them?' And I thought 'Well they're in their thirties, you know, they're not', and I didn't want to tell them but my husband said 'if it was my mum I would want to know and I would be very upset if I didn't know'. 

So I did and I thought 'well I'm not telling them on the phone' and we went up to London and my son and his wife had just bought a house in London and we went up to have, they were seeing decorators and everything and the only way I could get the two boys together was say 'look I'll meet you at the house and I want to talk to you' and they thought I wanted to talk about, about my ex's money, you know, about what's going to happen when he dies, and I actually phoned my ex and told him what I was going to tell them, and he'd lost his mother when she was forty eight with cancer, and he was very upset about it and he said 'I thought you wanted to talk to them about me, you know, and leaving, what you're going to do with my money'. I said 'no nothing', and he was very concerned and I said 'I'm going to tell them, I'm just preparing you, (because one of them still lived with him), be prepared to tell them, you know, sympathise with them, but I am going to tell them what it's about'.  
 

Since she was diagnosed has noticed there is more information and health professionals seem more willing to explain things.

When I first had, you know, the ten years previously, you didn't ask questions because it wasn't the thing to do, you know, and you were told. My oncologist was a charming man, a lovely lovely man but he explained it all to me but I really wasn't, I didn't know enough about it and you didn't really ask about it, you know, you asked one or two questions but you really didn't go any further, so I didn't learn enough about it I must admit.

Now I must say now, they sent me to see the oncology nurses and there is a whole, it was like a whole new life opening up because there I've got these wonderful nurses who knew so much about it, which I had nothing like this ten years ago, I was so in the dark I really didn't know what it was all about, I didn't know what oncology was, I didn't know what the drugs were, there was no internet, nothing to look up, you couldn't find out very little and you were in awe of the oncol, you know, these doctors, you just didn't ask them, you asked the nurses and it was, they really didn't know enough to tell you, you just had to know how your reaction was, you may get this, you may get that.

Here suddenly there was leaflets galore, booklets galore with Cancerbackup, you've got a phone call you can phone anytime you're not sure, they were superb.