Interview CC14

Age at interview: 36

Age at diagnosis: 27

Brief Outline: Diagnosed with advanced cervical cancer and given a poor chance of survival in 1992. External Radiotherapy followed by Internal Radiotherapy.

Background: Flight Attendant; cohabiting, no children.

Describes her friends different reactions to her illness.

Everyone was shocked. Some people didn't know how to react. Some people who were my really good friends I didn't hear from. And there's one particular friend who I haven't really heard from since. She just didn't know how to cope with the illness or how to talk to me. Other people that weren't such good friends became really good friends because they wanted to help. And some people just wanted to jump on the bandwagon of the attention. So you had to differentiate between different people and friends. But everyone generally was fantastic.

She felt well-supported by her GP and consultant.

My doctor was fantastic I have to say and a couple of times she would phone me and say 'I haven't spoken to you for a while, I haven't seen you, is everything going OK? If there is any time you want to talk,' she said 'I've advised all the doctors in the practice, they all know of your situation and you can come and see us at any point.' So they were very supportive and I did feel that I could with anything, any ailment and I wouldn't be pushed away as saying I was wasting time. I don't think I ever did that but I remember going to see my doctor just after with my husband and they put us forward for stress counselling, they thought that maybe we would benefit as a couple to talk about my experiences and how it had affected us and how to manage the future. So that was through my GP as well. And I also had, my consultant was there too, he had given me his private home number, I could call at any time. He was very supportive. And I didn't feel that I was wasting their time. They were just there for me really; they were fantastic.

Describes how she sought further medical advice after she started having discharge as well as...

In approximately 1990 I went to the doctors with some abnormal bleeding and I was a bit worried that this was something and the doctor just advised me there was nothing wrong. He examined me and told me basically it was just normal and to go away and forget about it. And because I was quite na've at this time, I was only, how old was I? 27?

Well it was before then, this was when I was about 25 and I just presumed this was how things were. And it was only two years later when I started to have a discharge as well as the bleeding that had continued all this time and I changed to a different area, I went to another doctor to see what the discharge was that I was advised to have some tests. And in the meantime I was put on antibiotics and so was my husband to try and clear up the infection, and nothing happened. And I was away on holiday and the infection was so bad that I would wake up in a pool of something, which was rather embarrassing and I knew that there was something drastically wrong. And when I came back from holiday my doctor sent me for a colposcopy at the local hospital. 

He took the colposcopy and as he was doing this he called the nurse over to look at the screen and advised the nurse what he could see, I didn't know what he could see, he then advised me he would be taking a biopsy. So he took the biopsy and, which I have to say I didn't feel any pain, and then he asked me to go straight back into his office to go and see him. So I got dressed, went back into his office, still not suspecting anything sinister, sat before his desk and he told me that I had cervical cancer, I would never have children and we didn't have to wait three weeks for the results, we had to work now. 

She couldn't identify any known cause for why she developed cervical cancer.

Yes, obviously in the beginning when the doctor are talking to you they ask you if you've had any cancer in your family which, there wasn't anything. They'd asked me if I'd had lots of sexual partners, which I hadn't. They'd asked me if I'd started having sexual intercourse early, which I didn't. They'd asked me about my diet, which I thought was quite normal. They'd asked if I'd had anything stressful things in my life which I couldn't actually pinpoint anything. So for me I didn't feel there was a real, there was a real cause, I'm just a statistic I'm afraid. I don't know why I really don't and if I could have said one of those things, there wasn't anything really.

One of the things they talk about as well, perhaps more recently, is smoking, have you heard about that?

I haven't no, I've never smoked, never.

She had been worried about having the rods removed after internal radiotherapy but it had not...

And at the end of the five days when they came to take the tubes out they had warned me that the pellets are timed to a certain extent an exact life, each radiation or radian pellet has got a shelf life basically, so they'd worked out to the second what time they had to come out and it was six o'clock on the Friday morning. So the whole night before I didn't sleep, panicking when these tubes were gonna come out. And the nurse had to come in the night before and hold my hand and talked to me. We became very friendly, and said to me what was gonna happen and how it was gonna happen and that they would give me medication to relieve the pain. So at six o'clock in the morning I was given the pethidine to take away the pain and then two nurses came in to take out the tubes. Two came out really easily. The third one had real trouble to take out. And although it wasn't painful it was just really uncomfortable and then all the packing came out as well, which was an awful lot. 

She suffered severe bowel problems and sickness during her radiotherapy for advanced cancer.

And I was taken in every day for three weeks to have 50, no 30 seconds on each side and a minute just on the top, which doesn't sound very much and it doesn't really affect you in the first couple of weeks. And at the beginning I thought this is easy, I don't know what people are talking about; it doesn't make you ill. And then on the final week of radiation, I'd lost so much weight and I was really sick, I had constant diarrhoea and I was in a lot of pain from those two symptoms basically. And I remember thinking if only I could eat something and keep it down. I couldn't even keep a glass of water down at this point. And when I was going for the radiation every day the nurses said to me if I lost any more weight they couldn't perform the radiation because they just couldn't line me up with the beams of light on either side of the room because my weight had gone down. And at this point also I had arrows drawn all over my body relating to different parts because they were unsure how far it had spread, they decided to treat me from just above my abdomen, to quite low on my legs to try and cover the whole area. So this is why I was getting other symptoms too because it was destroying part of my bowel so this was affecting my toilet habits really badly.

She explains how she has learnt to cope with long term bowel problems following radiotherapy.

In the beginning I was afraid to [go out] because of my bowel and I would always be looking where the nearest toilet was or if I'd be on a course for a day I would think I can't go because what if I have to run out of the course. But I've actually learnt to live with that and I do tell most people so it's not sort of an issue and if I'm out for the day. I think psychologically I can cope with it a lot better now so physically it doesn't affect me so badly for some reason. So that would be the only thing that would be a long term effect on me I think but its something that I have dealt with and can deal with and it doesn't affect anything I do anymore. And nothing else is affected, I can do anything.

Mentally it was easy when I was with my husband because I thought he understands, he knows. But when I was going into a new relationship it was something that I thought someone's not going to like me because of this. But its actually amazing how people understand. My new boyfriend hasn't got a problem with it at all. And he will be in the car with me and spot the toilets for me if I need to go so he's very supportive. I think its something again you've got to talk about. If you don't tell your friends and you don't admit that you've got a problem then you probably have a problem yourself mentally because dealing with that is quite hard if you don't admit it. And I think probably I could wear one of those medi alert bracelets if I needed to for shops and things but I don't want to do that, I don't want to be treated as an invalid, I want to be a normal person and if you need to there's always ways basically.

Explains that not being able to have children was not a problem when she started a new relationship.

It was quite tough actually and he didn't know obviously beforehand although I knew him years ago he didn't know what I'd been through. It was something I wanted to discuss quite early in the relationship because I didn't want to get involved with somebody if two years down the line they decided they wanted children. So it was something that we did discuss quite early on and I wanted him to really go away and think about it before we continued. Because I couldn't have coped with someone rejecting me again because of my fertility. And I wanted someone this time to love me for me and to be with me because it was the person not how I'd changed inside. You know because obviously inside I'm very different to probably another woman. And we discussed it, we talked about it, he went away and thought about the children scenario and it really hasn't been a problem. He came back and said it wasn't an issue, he didn't particularly want children anyway and he didn't feel there was anything physically different to me, to any other woman. And that's what I needed to hear really. I needed for someone to be really positive and on my side. Now it's not a problem at all but initially I think the problem was within my own head because I didn't, I thought I'd be rejected for things they couldn't see.

Describes how over the years she has come to terms with not being able to have children.

In the beginning I just wanted to survive, so I'd say for the first six months it was just survival and getting through the cancer. I think once I went back to work suddenly reality hit me and I decided I wanted a baby because I knew I couldn't and I think that's probably a natural feeling. So I did look into adoption and we got papers, me and my husband to talk about it. But the papers laid on the side for a while and we never discussed it and I think it wasn't really what we wanted, it was just a need that we had to go through. And then I was advised that I possibly wouldn't be allowed to adopt for five years anyway until I had the all clear so we kind of dropped the whole procedure, we didn't even go very far down the line. On a couple of occasions I did say to my doctor whether I could have IVF and he did write to the clinic and they came back and said it had never been done before but they were prepared to try it but I would have to be given lots of hormones to bring on this. And we decided again it wasn't what we wanted and I didn't want to go through a possible illness because of this and then disappointment at the end.

So I think once I knew that definitely I think it, it isn't an issue for me anymore, it's something I've coped with over the years. I do feel I'm lucky to be here and that I wasn't meant to have a baby anyway. And I've got so many nieces and nephews and godchildren that I haven't got a problem with children. I remember a counsellor came to see me when I was in hospital once and she said to me 'Whatever you do, do not feel bitter about other people's children because it will destroy you.' And she said if you feel that way buy a dog so I don't feel it's an issue for me anymore to be honest, its something I've coped with over the years I think.

Comments that radiotherapy did not have any negative effect on her sex life.

Yes, mentally I think for a start because you're very aware it could be painful, it could be sore, you could affect something, you could bring on another tumour, so all those feelings are going on in your head but physically it wasn't painful at all actually. It wasn't, it wasn't uncomfortable. I was told in the beginning that I might lose the top of my vagina from my treatment, but it didn't feel any different for me. My husband said it didn't feel any different for him. Again, it was the release of not having the blood, it was just so different for me because I'd had that for a few years and suddenly it wasn't there. It was really good.

She advises talking to friends and from her own experience a bad prognosis can work out to be...

For me to talk to somebody or some people, whether its one or two friends, or a group of friends, I think you really need that support. I don't think you should try and cope with it on your own. I would definitely, definitely say that because I got an awful lot from my friends. Probably more than my family in a way because I protected my family and probably didn't tell them everything, whereas your friends you definitely do share a lot more. So I'd definitely say talk. Be positive because even though the diagnosis may be bad it doesn't always mean what it means in the beginning. It can work out to be a lot, a lot more positive than you think.