Interview 06 – Cancer (young people)

Diagnosed in 2002 with acute lymphoblastic leukaemia. Her chemotherapy treatment lasted for 2 and a half years. Drugs were given to her through her Hickman line and orally. On remission since May 2004.

She refused to go back to school while on treatment because she was scared and embarrassed.

Age at interview 17

Gender Female

Age at diagnosis 14

And what about the school where you were. Did you’?

I never went back. I went up to start at, to start back school, then I’ve seen my guidance teacher and I says, ‘I can’t go in. No want to go in. So I started crying and this, she says, ‘Well do you want some of your friends from your class. Can your best friends to come up and see you and that?’ I went, ‘No I just want to go home. So then we went back outside and they were in the car park coming home from lunch aye? So then I did see them before I went home. But I still keep in touch with them as well.

And you didn’t want to go back to school?

No, I didn’t want to go back.

Why?

Scared.

Scared of what?

Embarrassed and,

Embarrassed of what?

Dunno [laughs] people looking and

People looking at you?

And talking and everything.

So you were concerned of why, of how they would receive you?

Yeah.

Did the school or the head teacher or whoever talked to the kids?

Yes, ‘cos they had to say that, like if you’ve got a cold or that you can’t come in ‘cos I might catch it so they had to tell everybody in school. And that’s what made me most scared, ‘cos everybody knew.

And you felt embarrassed?

Yeah.

Embarrassed because everybody knew that you had leukaemia?

Yeah.

At that time you had lost your hair?

Yeah, had a hat on.

Was that something to do with you not wanting to go back to school?

Probably, think it was.

Ok, and so you stopped going to school altogether?

Yeah, then I was, exams were, well they gave me grades on my exams ‘cos they’re third year work. And then I never went back to school.

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Said that the children’s ward was boring and that there should have been at least a ‘Teens…

Age at interview 17

Gender Female

Age at diagnosis 14

What are you feeling about sort of having to stay in hospital?

It was boring when I stayed in.

Boring?

Yeah, there was nothing to do. Then when I did have the chemotherapy when I was in I was too tired to do anything anyway.

Ok, what do you think they should improve for people your age in hospital? What do you think they should have?

Dunno. A teen, a teen part of the hospital maybe.

Yeah?

‘Cos it was all children. Like, theres a children’s play area with books and crayons and that, but I wasn’t going to go in there. It’s for children.

So you would have preferred a?

And then you, if you had a teen bit you could get to know the other teens too.

Did you meet other teens, other teenagers or?

Not really when I was in, but going back to, back and forward to the clinic, I know more now.

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Felt that she missed out on her teenage life and sometimes felt depressed.

Age at interview 17

Gender Female

Age at diagnosis 14

Now I would like to ask you about your feelings regarding your experience with leukaemia, Again I mean I think that other teenagers facing a similar situation may appreciate to know how other young persons have felt. Have you ever wondered, why me?

Yeah.

When was that?

When I first got diagnosed, why couldn’t it have happened to somebody else and, mmm.

Ok.

I don’t know why it happened and everything.

Have you ever pretended it isn’t happening?

No, I just, I just got on with my life, I didn’t let it hold me back from anything.

Have you ever felt angry?

No.

Or sad?

Sad aye. Used to cry in bed.

You felt depressed?

Yeah.

When was that?

One day I came back from the hospital, and it’s just the same treatment and home again. I just went to bed, then I woke up and I was arguing with my dad and, just ‘cos I was crabby and I wanted to take the bottle of morphine, I was drinking it from the bottle, my dad had to take it away.

I just says it’ll go away now ok, and I was just drinking it wanting it to go away. But, it was stupid.

I said I’ll get better, to myself. And just enjoy like, enjoy time the now just in case I die.

‘Cos I was, all my teen life aye? And I thought I’d missed out on that, I says, ‘I’m not missing it?’ So I just get on with it.

But have you felt that you have lost part of your teenage years?

Yeah, ‘cos like they’d go to the pictures and I’d be too ill to go. To have a party and I wouldn’t be able to go in case of infections and missed out.

So you were, you were restricted in what you could and couldn’t do?

Yeah.

So you couldn’t go to places where there were a lot of people in case you caught an infection?

Yeah.

Ok, what else couldn’t you do?

Go swimming as well ‘cos I had a Hickman line in and you weren’t allow to get wet, would have been able to get infections and.

So for two years while your treatment lasted that you had to stay at home or in hospital?

Yeah.

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Her GP initially thought she had an inflammation but when her symptoms worsened did a blood test.

Age at interview 17

Gender Female

Age at diagnosis 14

I was fourteen when I took Acute Lymphoblastic Leukaemia, and I’m seventeen and it’s, I’ve just finished my treatment in May.

Ok, tell me about your symptoms when you were fourteen?

I was feeling sick, I had a lot, a lot of nose bleeds, lasted for ages. Then I was dizzy and I was too tired and that was it.

For how long did that go before you seek medical assistance?

Oh, I was ill in November, then so I went to the doctors, he says I’ve got just inflammation. But they never says even where so I went right. So they gave me anti inflamatories it never worked, then. I went back again they just gave me more, still didn’t work. I was ill over Christmas and New Year so I went back in January the 8th. And he says, ‘Right, well take a blood test. ‘Cos I was dizzy, I had to sit down at the top of the hill and then I went in, and I was shaking and a man that knew me says, ‘are you alright?’ and that, he sat me down. Then the doctor took me, took me for a blood test. Then mum came in, and she helped me down the road. My, my auntie seen us and she had to carry me home, I couldn’t walk. And the doctor says, ‘Well get the results within the week. And mum says, ‘No, you’re getting them, like, today. So she phoned, she phoned and says, ‘Oh you’re getting them today. Then the doctor came in at half past five that night and says I’ve to go right over to the hospital. He never said what was wrong.

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