Interview CC15

Age at interview: 31

Age at diagnosis: 30

Brief Outline: Diagnosed with advanced cervical cancer with spread towards stomach and bladder in 2000. Radio-chemotherapy (chemotherapy- cisplatin given one day a week) followed by Internal Radiotherapy (21 hours).

Background: Student; cohabiting, 1 child.

She describes changes in her preferences for taste and smells during chemotherapy (cisplatin).

The worst part of it, I mean everybody says how bad hospital food is and yeah it is, it's terrible, but when you're on chemo you don't want to eat anything - whether it be good or bad.

So my diet went completely down hill.

And then, after a while, I started getting that metal taste that they warned me about, in my mouth. And you couldn't make it go away. It tasted like you'd been sucking like a stainless steel spoon. All day your mouth was dry. You wanted a drink but if you had a drink it made you feel sick because of the taste or the smell.

The anti-sickness were working until I got a whiff of something. And then the hospital food used to come in like a metal tray. The sight of the tray made me feel sick and then when you take the top off, the smell sort of suddenly comes out. And the only thing I could eat after a while was citrus fruit.
 

Describes how she feels happier than before she had cancer.

I'm quite positive about the future. I'm studying and so, I'm studying criminology and so I'm busy with my studies now and at this moment my worry is not cancer, it's my studies. And I do feel very positive. I think, I don't know I don't think cancer will come back, or if it comes back I'll fight it again. So I'm very positive. I do feel very happy. I feel happier than before. And I don't complain about little things like bills to pay or because it's cold or because it's raining, I do feel much happier. And I feel much healthier as well. I don't know why but I feel stronger than before.

Can you say a bit more about that? About how you feel and the effect its had on your life?

Yes. It makes you think different. I used to grumble another bill to pay, always cold and raining, oh why is everything wrong with my life and now I don't anymore. Like I said I used to live in another flat and when they wanted to sell it. I say 'OK we have to move yeah but its not the end of the world. But I knew for a fact that if it was before the cancer I would go oh why, why, why has this happened' I would grumble and grumble. 

I feel more relaxed now, I don't know I feel a very relaxed person now. I feel very happy. I just, what shall I say, I love life now, I'm happy. I might not be rich, I might not have nice house, nice car but I'm happy. I wouldn't change my life. I'm very, very happy.

She describes her CT scan.

I was a bit scared because I didn't know what was a CT scan. But I just had to drink a lot of water and they gave me an injection with a liquid that travels from, in your body and leaves a colour in your body. And its funny because as soon as you get this injected in your body I felt a very strange taste in my mouth and very hot, it was like whiskey taste, something like that. And I thought 'oh my God, what's this' and I felt really, really hot but that's all. And after they just asked me to put my arms under my head and I went through the machine, its like a disc, the machine's like a disc, I just went through three times. I had to undress, put on a hospital gown and that's it.

She experienced difficulties rebuilding her sex life after radio-chemotherapy before it was...

So we were really, really nervous at the time because I was afraid that it was going to bepainful. He was afraid and he was like, like the first time you have sex you got all nervous and I could feel that my vagina was a bit shrunk, it was different. And he could feel it as well but it was not painful. But we could feel that it was bit tight, it was not like before. And it was difficult because, it was just difficult because it was not the same. It was different, the vagina was tight and, and the cancer was there, so it was like, it was difficult for him and it was difficult for me and for a while we just decided not to try anymore so I went back to dilators. And I think there was a point, there was a problem with our relationship. I wanted to have sex because I wanted to prove that I was able to do it. And he didn't want sex because he knew it was not right. And he was afraid to hurt me. And then we had a talk and we say 'We can't carry on like this, we have to try because I need it, you need it and we just have to carry on as normal otherwise its going to be another problem.' So slowly, slowly we started with our sex life. But there was like I was always asking 'How is it?' 'Do you think anything was different?' 'Was it different?' 'Do you think its still very tight, my vagina?' And it was, sometimes he didn't tell me the truth and I knew he was lying so I got upset with him. And sometimes because he knew that if he didn't tell me the truth I was going to be upset. He did tell me the truth, and then I was upset because he told me the truth. You know it was like, it was a very, very, very difficult time to rebuild our sex life. I think because instead of waiting four weeks I had to wait all these months it gets more strange doesn't it, to go back. But now it's fine, no problems, the size of my vagina went back to normal and no problems at all. The doctor told me that a lot of women they lose their libido, they don't feel like having sex but I didn't, I felt like before. So nothing change, it's still the same. 

She explains how it was difficult to talk to someone she was close to and why she found a local...

I find it very useful because there was some, there was a lady there and she had cancer when she was 20 and she's now 55 and she was still there and fine, you know. So for me at the time it was like hope. Because I was feeling I was going to die any minute and met someone with cancer long ago was there was like yes there is still hope. And its just talk because your partner can be very caring but you can't talk, men especially, you know. My partner, he's afraid to talk. Its like when I mention cancer for him its like, he tries to change the subject and sometimes I feel like talking. Not, now I don't feel I talk so much but at that point when I was feeling really depressed I wanted to talk about cancer. Once I decided to plan funeral, so I was telling my partner what I want and why and he didn't want to listen and I just said you have to listen because that's what I want to talk. And I realise it was painful as well for him. But at the group I could talk these things with everyone because everyone was going through the same or had been through the same. So it was good, this group helped me quite a lot. And they had professional help as well, while the other group was just voluntary help. This one was professional, there was a nurse, there was everything there, there was a psychologist there if you need to talk. 

She describes the exhaustion, diarrhoea and sore skin she experienced during her external...

It was after I think three weeks of radio that when it start. First my tummy and my back start getting like burned, very dark. It was like a square on my tummy and a square on my back. That's where the radiations were so it was like a burn. And the radiologist told me not to wash with any shower cream or anything, just water. And I was feeling tired all the time really, really tired and I remember that I was waiting in this room and we were all looking very tired. 

And this girl she came all lively, it was her first day and I look at her and say oh yeah just wait another few weeks and you're gonna be the same as us. It was like we were zombies you know. We didin't talk, we just sat there looking at each other. And we saw each other every day but we didn't strike conversation because everyone was so tired. 

So we were just sitting there looking. And at this point I had started having diarrhoea quite badly. I used to go to toilet maybe six, seven, eight, nine times a day. And it was really bothering me because it was like I had to travel to the hospital and at this point I was going by minicab provided by the hospital because I couldn't travel on public transport. So the doctor arranged for me to have someone to pick me up in the morning for my treatment and bring me back after the treatment. And I was going oh my gosh what if I need to go to the toilet and I'm in a car, what am I going to do? But luckily that never happened. And I was very, very tired, very sore because my tummy and my back were burned. I used to put E45 cream, it didn't help at all.

She describes her tiredness and throat ulcers after her first chemotherapy (cisplatin) session.

And that day I came home and I was tired and I had a pain, a sore throat and I couldn't swallow the food that day. But one thing was very good, I never stopped eating. I was always eating and I made such an effort to have a meal that day because I couldn't swallow. It was fish and I couldn't swallow at all. And the next day I went to the GP and she said 'Oh you've got ulcers from the chemo,' and she gave me some medicine. And Saturday I went to work. I didn't go Friday or Thursday but I went on Saturday and I remember when I was working I was feeling so tired, so tired, like all the strengths were getting away from my body. And I remember coming home, and I used to live on the first floor and it was such an effort for me to go upstairs, it was like I was losing my strength. And I remember I had a shower and I went straight to bed. And I did sleep OK. And the next day I was still tired and tired. And I went for lunch at my sister-in-laws and I couldn't swallow the food and I was so tired. So I said to my boyfriend 'I go home, I need to lie down,' and I just lay down the whole day. 

She describes changes in her preferences for taste and smells during chemotherapy (cisplatin).

And certain foods I couldn't eat. And still I was drinking a lot of orange juice and now I can't drink it. When I drink it, it's a funny smell, a funny taste, so I can't drink it. And I remember I couldn't stand my deodorant. I would use it for years and at this point I couldn't stand the smell of it. And there's no smell, it's a roll-on, Nivea, there's no smell but at this point I felt a strong smell and I had to stop using it. It was the same with perfume. I could smell it, it was very strong, other people couldn't feel it but the smells were horrible.

But there was things like apples, I never liked apples but at this point I was crazy about apples and I'd eat apples every day. I used to say to my sister and to my boyfriend it looks like I'm pregnant because when we're pregnant we've got this cravings isn't it. And it was pitta bread as well and now I can't eat pitta bread, I can't eat apples and drink orange juice.

She comments that she did not feel any pain when the rods were removed from her vagina after...

And I was there all night with the tubes and at seven o'clock in the morning they came, they switched the machine off. They came in the middle of the night to see if I was OK but they had to switch the machine off to come in the room. So at seven o'clock they came, they switched the machine off and they say 'OK we're gonna take the,' they call the rods 'we're gonna take the rods out.' And they asked me if I want like anaesthetic by injection or the gas. I said OK I'll have the gas. And it was not painful at all to take, because I was using the gas it was not painful. I just felt, because the tubes were, they had some case around like a bandage and they had to pull it so I could feel it coming off, but it was not painful. And I saw the tubes were quite long this, this long but they were very thin and long and after that I asked them 'Can I get up?' And they say 'Yes, you can get up, you can have a shower, you can do whatever you want.' And I was OK. 

She explains that she felt happy during internal radiotherapy.

So at five o'clock I had to be isolated for the radiations so the doctor came and she connected the machine to the tubes I had inside my vagina. They were really big. And they locked the room. They put everything near me like food, water. I had a book. There was a TV in the room because I could move my head and my arms, but not the rest of the body because if I moved I could perforate my stomach with the tubes, so I had to be quite still. They gave me sleeping pills but I was afraid to sleep and start moving around so I didn't sleep even with the sleeping pill. And there was a camera and the nurse said to me 'If you need anything just wave, we'll come straight.' And they just locked the room when I was there. And it was like, I felt strange, I did panic for a bit just what if they're not looking at the camera and something goes wrong. But I just say no I just have to relax. And I was in touch with friends and family through the phone because there was a telephone. So my sister was ringing me from Portugal and I was in very happy spirits. I was laughing at the phone and making jokes. I did talk with my son on the phone. So I was not down. I was quite happy. 

Explains that she was worried because her teenage son didn't want to talk to her about his feelings.

But I was a bit worried about my son because I did explain everything to him from the first day, I didn't hide anything because I thought, I'm gonna lose my hair so if I don't tell him why, what am I gonna tell him. But luckily I didn't lose my hair with this chemo. But I told him everything; I didn't hide anything from him. I told him everything. And he didn't talk with me, he didn't make any questions so I was a bit worried, but he had a lot of support at school, because I thought it was better if I talk with the teacher and say what's going on and he had a lot of support. And I was in touch with the school to see if he was coping well or not. And the teacher said 'Yeah, he was coping well, they talk with him,' and that's fine, but I was worried about him. That was, my main problem was my son because I didn't know what was going inside his head.

And since then do you know what impact it did have on him?

He doesn't tell me, he doesn't tell me, he doesn't. He did cry once. When I went to hospital for the internal radiotherapy, he did cry that day but it was, that was the only time he cried in front of me, I don't know if he cried not in front of me, that was the only time. But he didn't talk with me, nothing. I did get him a book, there was, that lady who was with the doctor when they told me I had cancer, she was from the MacMillan. And she sent me a book for him to read you know for a child, for children, and I did gave him the book and I said 'Do you want me to read it with you?' And he said 'No.' So I said to him 'OK you read and if you want to ask anything, just ask me and I will explain. But he didn't ask me anything.