Interview 27

Age at interview: 21

Age at diagnosis: 16

Brief Outline: In October 2000 she was diagnosed with a Ewing's sarcoma and had an operation to remove her shoulder blade, followed by physiotherapy. Chemotherapy before and after surgery. In remission.

Background: Student; living away from home. She is engaged to be married. British. Says that her experience of cancer has made her a more determine and stronger person.

She had a very bad pain in her shoulder.

I was sixteen years old and I was, I'd just finished school, my GCSEs. I was having pains in my shoulder for about, well from a few months before that so when I was having, doing my GCSEs I was in quite a lot of pain and I wasn't sure what it was and I went to the doctor several times and he said it was things such as muscle pain, my tendon getting trapped underneath my bone arch, and then I started my A Levels and I was in even more pain so I went back to doctor's again and he sent me for physio and I started the physio but I found that it wasn't helping and I was in a lot more pain and, and I wasn't sleeping at this point every night I was in a lot of pain and I was having lots of painkillers, so I went back to the doctor again and he just said the same thing I he gave me a cortisone injection because he thought it was something to do with whatever it is [laughs] that you have cortisone injections for I can't remember, so that didn't help still so I was carrying on with the physio and then one day my physiotherapist she noticed a lump on the back of my shoulder and she felt it and she got her colleague to have a look as well and they didn't know what it was so she phoned my doctor and just said that she thinks I should go for an x-ray. So a couple a days later I was booked in for just a normal x-ray and I went along and then I went back to school and that afternoon my Mum got a phone call saying that they wanted me to go up to Hospital in to see someone. 

Her physiotherapist noticed a lump when treating her for shoulder pain and recommended an X-ray.

I was sixteen years old and I was I'd just finished school, my GCSEs I was having pains in my shoulder for about well from a few months before that so when I was having, doing my GCSEs I was in quite a lot of pain and I wasn't sure what it was and I went to the doctor several times and he said it was things such as muscle pain, my tendon getting trapped underneath my bone arch, and then I started my A Levels and I was in even more pain so I went back to doctor's again and he sent me for physio and I started the physio but I found that it wasn't helping and I was in a lot more pain and, and I wasn't sleeping at this point every night I was in a lot of pain and I was having lots of painkillers, so I went back to the doctor again and he just said the same thing I he gave me a cortisone injection because he thought it was something to do with whatever it is [laughs] that you have cortisone injections for I can't remember, so that didn't help still so I was carrying on with the physio and then one day my physiotherapist she noticed a lump on the back of my shoulder and she felt it and she got her colleague to have a look as well and they didn't know what it was so she phoned my doctor and just said that she thinks I should go for an x-ray. So a couple a days later I was booked in for just a normal x-ray and I went along and then I went back to school and that afternoon my Mum got a phone call saying that they wanted me to go up to [name] Hospital in [place] to see someone.

After her surgery her treatment was extended because she had a very aggressive form of cancer.

And then in the April of 2001 I was, I was seventeen by then 'cause I turned seventeen in November 2000 yeah not. April I went in for my operation I went up to [place] again, had this operation, and they removed my whole shoulder blade, my right shoulder blade because they were worried that if they left half of it in then the Cancer could still be there, but they said when they took it out there was hardly anything left of the Cancer, which was really good, but unfortunately when I had the operation something went wrong and my immune system just dropped suddenly when I was in the middle of it and I lost loads and loads of blood and I ended up in intensive care for a week on a ventilator 'cause I got a lung infection as well, so I was really, really ill with that. Finally I came round and they, I was on a general ward, and within a week I was home because I was so determined to get home [laughs]. 

So I started having physio on my shoulder and my arm to try and build it up and after the operation they changed my dose of Chemo, they said I'd have to have another eight rounds which [exhales] made me just so upset I just couldn't believe it because they'd originally told me that I'd probably have six, the six rounds, then my operation, then probably just a another three or something, but they said because of the type of Cancer it was

Which type, was?

It was a Ewing's Sarcoma.

Okay.

That they'd, they'd have to do another eight lots just to, as a clean up, so I was, I just couldn't face another eight rounds of Chemo, but luckily they, they dropped one of the drugs and they changed another one so [sniffs] the dosage was lower and it was a different type of Chemo and it was, it was a lot better, I wasn't as ill this time round and I, it seemed to be able to bear it a bit more.

Had bad times during treatment but says that the reality of what she had been through only really...

When did you start taking anti-depressants?

I think it was [sighs] just at the beginning, for, no it must be have been just before I started my second round of chemo I think. Yeah.

Do you remember why?

Because I was just feeling so down, so low, I'd lost my shoulder blade, I couldn't lift my arm up, and I was just, I just couldn't see any light at the end of the tunnel, I think it was after they told me that I was having another eight rounds of chemo and I just thought, 'I can't do this any more, I really can't, I can't go through any more of this'.

So you felt like giving up at that time?

I did yeah, there was a few times, but my Mum said that I can't give up and I've come this far, I've got over the worst of it and I can't give up and, [inhales] so I didn't I carried on. But yeah I mean I was quite glad after, 'cause I thought, 'Oh yeah this is looking up, the chemo's not so bad'. And then I had the reaction and then I just went down again and I was just, I would just cry most days and say, 'I can't believe this is happening'. And I just, I didn't wanna do anything, I, it came to the point where I didn't wanna see anybody.

And I had a, I've got a younger sister and, she was scared to hug me and because I was in so much pain all the time and then slowly I started getting movement back and I had to start learning to walk again with the help of my physio, he was really, really good, so I've started to learn to walk again slowly and then things started looking up.

Were there other episodes of Depression or?

Only when I finished all my treatment because when I was going through it I don't think it really hit me what was happening to me and what I'd been through and how close I'd come to not making it, and so it was probably about six months after I finished all my treatment I was starting to get better that I went through a stage where I just, I couldn't handle everything and, I didn't know what to think, I didn't know what to do and I just found everything really hard because the whole time I was ill I'd been looked after and I'd been under constant supervision and then suddenly I finish and I'm sort of let out into sort of world on my own and that was really scary 'cause I had to defend myself and, I had to get on with my life and that was, that was a scary thought because I haven't really, when I's going through it I didn't actually think I'd get to that stage so I wasn't sure what I've, what to do or anything, so that was really, really scary and I think that's probably why I got so depressed and but I came through that.

In a way you had to become your own person once more?

Yeah.

But at the same time you had, had all this experience that it was quite hard?

It was, it was difficult 'cause I just felt like I was never gonna be like anybody else because I'd been through something that most people would never go through in their lives, it was hard to explain to people and I'd see things differently and I just felt like I wouldn't fit in anywhere but when I went to College and I just started getting my life back and I met new people, made new friends, things just started to change and that's when I just felt like I was, yeah, getting my life back again, living, the few years that I'd lost so, I just wanted to be a teenager and do the normal things that teenagers do, yeah.

Her hair has come back thinner and lighter but she did not mind.

Well I, I kept like little whispy bits for a few months and I wouldn't get rid of them because I've, I kept saying, my Mum kept saying to me, 'Oh I'm going to shave your hair off now, you've only got these whispy bits'. And I said, 'No, no, 'cause this is this is the only hair I've got left, I wanna keep it, I wanna keep it'. And then in the end I just thought, 'No, I'm gonna have to get rid of it and have a new start'. And then I, so by that time I think I probably accepted it [sighs] that was the least of my worries I think after the way I'd been feeling I just thought, 'No I'm just gonna get rid of it'. So I just told her to shave it off in the end.

Yeah, but I was really upset I, did cry when she shaved it off 'cause I just thought, 'That's it, that's the rest of my hair gone'. I didn't think it would ever be the same again 'cause I, I've heard stories of people saying that your hair always comes back different, so that was really sad [laughs] in some ways.

And has yours come back different?

Yeah it's come back very different, yeah, used to be very long, thick, wavy and dark, and it came back really, really thin, straight and lighter, so yeah it's a lot different [laughs].

[Laughs] but how do you feel, about it?

To be honest I don't, I don't care I'm just glad I've got hair again, I, I really couldn't care what it was like, 'cause you can change your hair, so doesn't, doesn't really matter to me.

Okay.

I was just really, really happy when my hair started coming back [laughs].

Okay so it is not a big issue any more?

No, no, not at all.

Explains that she had a new procedure which involves removing and freezing ovarian tissue, but...

So I went home and a few days later I had a letter actually from my Consultant saying about fertility treatment, saying that I was gonna be infertile so I had this option of going up to [place] and having ovarian tissue frozen for when I wanted to think about having children so I decided to have that done, I mean I was only sixteen at the time but I knew I wanted to have children in the future so I decided to have it [sniffs] and then when I got back from [place] I went straight into hospital, had my central line put in and I think it was a day or two later I started my Chemotherapy and.

Can I ask you something can you tell me about your fertility treatment? What did it involve? Can you explain it in detail?

I had keyhole surgery and they it's quite a new treatment that's only just come out and I had slices of my ovarian tissue taken and frozen [sniffs] but they said that as it stands at the moment the chances of having children after having this treatment is not very high because it's only a new treatment and so far there's only been two women in the world that have ever had children from it so I was only in there for about two days and the operation was really quick.

And they do it under general anaesthetic?

Yeah.

She found it very easy to talk about her experience of cancer with her fiancé.

Well at first I was, really self-conscious of my scar, 'cause I have a big scar on my shoulder, so I was really self-conscious and I had to cover it up, but then when I came to Uni I was, I was older and, I just thought, 'No I'm not gonna hide it any more, I'm proud of it, I'm proud of what I've come through'. So I didn't hide it and when I met [name] he didn't say anything about it, I think he'd noticed it but he didn't say anything about it and then one night I just found it really easy to talk to him and one night he, we were just talking and he was telling me that he used to have epilepsy so we just started talking and he was like asking me, asked me what my scar was from so I told him and he was just really, really nice about it and I felt like I could talk to him because he'd listen, I mean, some people, I wouldn't feel I could talk to about it because I've thought, you know they wouldn't know how to handle it or they're very, be scared or whatever, but we were just friends at that point and it was just nice to talk to somebody who sort of understood what I's going through because he'd had an illness himself. So he, yeah he was just really nice and then we just seemed to click and we just seemed to talk about everything and I wasn't scared to talk about it in front of him and I wasn't self-conscious in front of him so.

And have you discussed it, the question of fertility and?

Yeah

The possibility of'?

When we got together I said to him, I spoke to him and I just said that I don't know if I'd be able to have children and he was really nice about it, I told him the whole thing and he said, 'Well, you know, if we're still together and we think about that then, then there's lots of options we can go through, talk about'. So, I mean we've always talked about that, I've talked about it 'cause I've been, I just sent off a letter last week to the Consultant who did the operation just saying that I'm thinking about having the ovarian tissue put back in, not because I want children now but in the future, I just think to make the steps now to have it done would be good, so we've talked about that. And he's, he sort of, he says to, 'Oh don't get stressed about it if it doesn't work, then there's other options'. And so he's really nice about it.

Thinks that her 7-year-old sister had a hard time because their mother spent most weeks at the...

My sister had to spend a lot of time with her Grandparents because my Mum stayed with me almost every night in hospital so yeah my sister spent a lot time with either her Child minder or her Grandparents, which was really hard on her I think and, she didn't really, I mean she, she understood what was going on with me [sniffs] but I don't think she really understood how serious it all was, and I know she was scared because she was scared to touch me and, you know, I don't, I don't know what she was like at school, I think she was a bit disruptive and I think, she was upset quite a lot at school and so I know it was hard for her.

How old is she?

She's ten now, she's nearly eleven actually now so she must have been seven, something like that.

Other siblings?

Yeah, yeah, I got two brothers as well and they couldn't really cope with it, I mean, I think they both came to see me once in hospital, and I know now that they feel really guilty about it and I've spoken to them and they've both said that they just couldn't handle it, they couldn't handle seeing me like that, seeing me so ill [sniffs] which I understood 'cause, I don't know how I'd react if one of my brothers or sisters was like that, but I dunno.

They were younger also?

No, one's younger, he's eighteen now, and one's twenty-four.

Okay.

So, my Dad, my Dad would come up and stay with me on weekends, so give my Mum a break and he'd, because he came with me to have my fertility operation, and then he came up halfway through, when I was in intensive care, he came up for the rest of the time there, so him and Mum would sort of share it, but he was a teacher as well so [sniffs], it was quite disrupting on both of them I think, both of their jobs.

Okay.

Yeah.

So and, have you talked to your, your little sister now? 

Yeah, I have spoken to her yeah, she speaks to me as well.

Yeah?

She's, I'm, when I told her that I was, all clear she was really, really happy and, yeah, I mean we're not as close as we used to be, I have, I think that's, because when I was ill I was pushing her away and because I just didn't want anybody near me and I felt really bad for doing that, but I mean we are still close but not as close but yeah. I haven't really spoken to her in-depth about it but she does understand, I think.

She knows that her sister had Cancer, and she tells her friends that, but I think her friends are so young they don't understand themselves so.