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Was shocked to hear her diagnosis because her mum had told her she had a lump in her head.
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Well, Mum told me that I had a lump in my head and she went and spoke to the doctor about it and the doctor actually didn't realise that my Mum hadn't told me I had a brain tumour and come in and told me, so.
So you were not prepared?
No, I wasn't prepared, I just thought I had a lump in my head that needed to be removed, I didn't realise it was bad as cancer.
Was it malignant?
Yes it was malignant.
And what was the name?
It's an Ependynoma.
Okay. What, what did you feel when the doctor told you?
Very, very shocked [laughs]. I didn't, I just thought it was an ear infection, I never thought of it to be anything else, so.
Were you scared?
I was a bit, I didn't know what I'd done to have it and everything and they couldn't tell me or anything so. And they didn't know how long it had been there or, so I didn't whether I'd something that had caused it or, I just didn't know.
Okay. And regarding emotions, apart from shock, did you sort of, were you anxious or depressed or?
I didn't get depressed at all, and I was a bit anxious like I didn't understand like what was going to happen next and everything so. And at the stage that they told me I had brain tumour I had to have tests to see if it was malignant or not. |
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A mother who looked on the internet wished she hadn't because she was frightened by what she found and was afraid that her daughter's brain tumour might recur.
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Mother: I actually went on the internet and it was quite frightening actually. In fact I wish I hadn't gone on there [laughs].
Really?
Mother: No, this is why I didn't really want to do it, so.
Can you tell me a little bit about it?
Mother: Well actually the, the community nurse sort of said to me about it, and she actually advised you not to go on it but it sort of, it doesn't actually, sort of when you actually put in about brain tumours it's, you're going all over the world and that, and sort of like the information that they give you then, the information what's coming from the internet is totally different.
Like there was actually one person what had had a brain tumour and it was twenty five years later got another one. Well we sort of thought after five years if everything was all right then that'd be it then, do you know what I mean they did actually tell us that she will have to be scanned for the rest of her life. But you, it was quite frightening and you sort of think to yourself, do you know what I mean, they could be all right for so many years and then suddenly it do come back, so I wish I hadn't gone on there tell you the truth [laughs].
Well I wish really and truly that the information that the doctors gave you, that sort of, you could read just what they sort of told you then. But instead of, they sort of gave you more and it was quite frightening.
Was a lot of kind of scary…?
Mother: Yeah. And sort of like every, like then, like all the departments that you went through, sort of somebody told you something extra and it was, it was sort of frightening. Do you know what I mean? Like really and truly I wish I hadn't gone on there and looked [laughs].
It would make you upset?
Mother: Well I wouldn't say it makes you upset, it's, it's frightening more than anything, do you know what I mean, and it, it's your daughter and it could be happening to you sort of thing, so yeah it's more frightening that sort of upsetting. |
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Decided to shave her hair for charity before she had radiotherapy.
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And did they talk about the effects of radiotherapy?
Yeah, they said that there's a chance, I will definitely lose my hair in the places where the rays was going to fired, so I decided to just shave it off for charity and they said that I'd get very, very tired and that I could become ill, a little bit ill from the side effects, but I didn't get that till afterwards.
Yeah?
It had finished, so I was quite pleased and my hair did grow back after they didn't think it would; and it grew back really fast, so I was really pleased with that. Because I didn't like the idea of going round, a 15 year old girl with all my friends with beautiful long hair and everything. So I was allowed to wear my hat and everything to school, so that was quite good. They were really good.
So how you felt when you shaved your hair and?
Very upset, because it was as if I wasn't me no more. Everybody that I, I used to have quite long hair and then to have it all shaved off in one go, it was really upsetting. But I quite surprised myself because I wasn't upset as what I thought I was going to be, for the fact that I was helping people by doing it. And I knew that it was going to fall out and people, I've had people in the family and that that's had radiotherapy before me, said that it's really scary when your hair falls out, clumps on your pillow and stuff, so I just decided to shave it for charity. |
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Her operation was successful in completely removing her tumour. She knew that without the operation she would have died.
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So you knew that?
Daughter: Yeah, I knew that I was going to die if I didn't have the operation. They explained it to me in a way that wouldn't get me frightened, or even more frightened than what I was.
And you were 15, that's a big thing, how did you feel?
Daughter: Very scared, [sighs] but I had my Mum with me the whole time that I was in hospital, so it made it a lot better, instead of being on my own. And they had loads of people that used to come in a talk to us and everything, and just act as if you're normal again and used to do like drawings and watch the TV and everything, so it kind of kept your mind off it, you wasn't really thinking about it.
So do you think it's good to tell this kind of information to young people?
Daughter: I'm glad that they did because I think I would have worried more.
And you had a counsellor or someone going to talk to you at that stage, before the operation?
Mother: Just the doctors.
Daughter: Just, yeah, just the doctors, yeah.
The doctors, and nurses?
Daughter: Yeah.
Mother: Well, yeah the nurses.
Daughter: The nurses were great [chuckles].
Okay. So you had your operation, the tumour was removed and what did they say to you afterwards?
Daughter: They just come in and told me that it was a success, that my brain tumour had, had been completely removed because at the stage when they told me I had it they didn't know whether they'd be able to remove all of it or...
And they then told me that I'd have to go through radiotherapy. |
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Being given just the right amount of information at the right time helped her to worry less about her brain surgery.
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Daughter: I think the way that they talk to you is very important because like when some of the doctors were talking to my parents and I was trying to understand because it was about me, half the time I couldn't understand, they were using really big words and Mum and Dad couldn't hardly understand them because they're not the brainiest, no offence. And so I thought it was really good how they talked to me in a way that I could understand, I think that is very important.
And like they, like selected different things that they were going to tell me and they didn't tell me like things that would make me panic and make me really upset and everything, but they told me enough so I didn't feel as if, they was all, everybody was like ganging up and making me do something that I didn't want to do. And talked me through and like made me feel better and everything, so.
Okay. Okay, so you think that, that's -
Daughter: Yeah.
- important?
Daughter: Yeah, very important.
But also for them to keep this, this balance between telling you enough?
Daughter: Yeah, but not telling me too much that I get, I thought that was really nice how they did that, and that, because usually when I was in hospital, like because I've had to have grommets and things, they just completely blank me, they did when I was like 11 and that, and talk to my mum. But I thought that it was really nice that now I'm 15 that they can talk to me and everything and explain, not in too much detail, but they did explain to me, so that was quite nice, I did like that.
And did you feel confident enough, enough to ask them?
Daughter: Yeah, I did, I did ask them questions, don't ask me what I asked them because I can't really remember, [laughs] but I did ask them questions like “What was going to happen to me after like I'd had it removed, would that, would that be it? Would I not have it again?” and things like that because I wasn't like sure, I never, I thought, you hear about it happening to people but you never think it's going to happen to you and it is a bit of a shock when it does.
Mother: And she told the doctor that if he let her die she'd come back and haunt him [laughs].
Daughter: Yeah [laughs]. |
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Said that she thought she coped with her brain tumour better than her mum did. But since her illness she now has a much closer relationship with her family.
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And what would be your advice to young people who are going to have surgery?
Daughter: Not to worry because it just causes so much stress. To like try to relax, I know it's really hard saying it now, and like just talk to people, and about anything that you're worried about, the nurses and that are always there to help you, so.
Mother: I think she coped -
Daughter: That's quite nice.
Mother: - with it better than me actually [laughs].
Daughter: I coped with it better than my parents [laughs]. They were all, I had to calm them down and everything, because they were making me panic, so I had to stop them [laughs].
Mother: Yeah.
Daughter: They were really worried and all upset and everything, I was like “Yeah, I'll get through this.” I, and now that I've like conquered going, having radiotherapy and having my operation and everything, I feel like I could do anything, anything that I want I can get as long as I work for it, so.
It has made a big difference in my life, yeah.
It has made you stronger?
Daughter: It's made me a lot stronger, yeah.
Okay. And coping with your parents, I mean you had to cope with your illness in order to cope with your parents, is that what you are saying?
Daughter: [laughs] I had to like look after my Mum while we was in hospital because she was so worried, she was like really, really worried, and my Dad was as well, he used to come up every single day after work and before, or before work to see me and, so it did actually cost a lot of money in petrol as well [laughs].
It seems to be that you're very good friends, apart from being mother and daughter?
Daughter: We never used to be, we used to like talk when we had to.
Mother: We used to argue a lot.
Daughter: We, yeah. But we like, we have a laugh and everything now don't we?
Mother: Yeah. Yeah.
So your relationship has changed for the better?
Daughter: Yeah. It was sort of like a blessing in disguise, if you could call it that. It's brought like me and my family closer together and everything and yeah, it's. |
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Advices young people on radiotherapy treatment.
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What about, what would be your advice to other young people who are going to have radiotherapy?
Mother: Use Aloe Vera.
Daughter: Use Aloe Vera, yeah [laughs]. And, I'm not really sure because I don't think there's anything really that people can say, you've just got to stick with it, put up with it for a couple of times and you just get used to it. It's not, it doesn't hurt it, it is fine, because I was expecting like these massive big rays like shooting through my head and out the other side and stuff, which I thought sounded really scary, but it's not at all. It's quite relaxing actually, you know I fell asleep a few times, [laughs] so it isn't as bad as like what you think, you've just got to put up with it anyway. |
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She could not do Physical Education at school and sometimes found it difficult to concentrate.
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And you said that you can't do PE?
Daughter: No, because when I run it's hard, it still, I still get quite tired and I have nowhere near as much as what I used to.
Mother: You were worried about the head being banged as well.
Daughter: And if I bang my head or something it could make me ill again and.
Okay. Are you on any medications at the moment?
Daughter: No, I'm not on anything.
I would like to ask you how did you find studying after? Are you able to concentrate well?
I do get it sometimes, like some days I can go into school and I'd, it's just all way over my head, I don't have a clue. And I just cannot settle down and concentrate and everything, I just sit there and it's, it's as if it's going in one ear and going straight out the other ear, but then most, I only get that like every so often, usually I'm absolutely fine, I can get on with my work fine and come home and do all my course work and everything. |