Interview 21

Age at interview: 22

Age at diagnosis: 5

Brief Outline: She was diagnosed with acute lymphoblastic leukaemia (ALL). Treatment: chemotherapy and radiotherapy. She has a Keyloid scar on her chest which appeared after the Hickman line was removed.

Background: Single, no children; lives at home with her family; works full time as a child care assistant. Participates in the activities of TOPS; a teenage support group.

Cancer has affected several members of her family and she worries about a relapse or cancer...

Do you perhaps sometimes, sometimes worry that it might come back or not?

Yeah, yeah they've obviously said that, you know, to, don't sort of pursue it, don't go on sun beds, don't go in the sun, don't do this, don't do that, [laughs] obviously it does limit me I don't, when I do go on holiday it's a case of sun cream, sun cream [laughs] and sun cream, but yes, it does, it does worry me and I think it, it worries me for other people as well 'cos obviously they're, everyone's fine now but it's sort of a year, two years down the line whether it comes back again or, you know, comes back in a different form or it-it does worry me because I-I always sit, always think that obviously with my family issue, my [eh] my Grandma had breast Cancer, my Dad had lung Cancer, my Granddad had Lung Cancer and there's me with Leukaemia, how more unlucky [laughs] obviously can you get? And I worry whether, if my Mum will get it, or my sister gets it, it does worry me 'cos as I say, I don't know whether it's genetic or whether it's just a fluke for the, you know, that it happened really.

So you don't just worry about yourself, you worry about those you love?

Yeah, yeah.

How do you view the future in general?

I pretty much take every day as it comes [laughs]. I never say that I'm gonna be doing this in two years time I always sort of do it now as such. 'Cos as I say you never know what happens down the line so I, I never wait just do what I've got to do [laughs] and sort of do it now.

Following a recent blood tests to check her hormones levels they found out that she has an under...

What tests were you having at that time?

It was mainly blood tests I'm I've still got to have sort of a yearly one at the minute. I've just the past sort of year's been not very pleasant, I had to switch my jobs in June but I had to have, take two months off of work because I came very low, very depressed and, and then they did a blood test to find out that I had an under-active thyroid problem, so they literally shoved me on medication and they're keeping a close eye on that now but they're just, they're trying to get the dosage right because they don't know how long I've had an under-active thyroid for they-they've put me on quite a high dosage so I'm buzzing all day and not sleeping at night [laughs].

And have your sort of moods improved?

Yeah definitely I feel a lot better in myself. Apparently to my Mum says she I-I look a lot better than I sort of did sort of a few months ago so obviously it, the, it must be doing something good. But I-I sort of questioned the doctors, 'Why didn't you find this out sooner?' And apparently, it, they have to do a special blood test for it to show up and when they-they do it every yearly, and obviously they hadn't done it for two years [laughs] the previous blood test obviously I missed out on that one so, yeah so, [laughs] this is why I-I go in for a blood test every three months now just to, just to check so.

Okay, any other problems?

No I am slightly dyslexic due to the treatment that I had. When I was on treatment apparently it's the radiotherapy or chemotherapy that-that knocks-knocks you behind I had to be taught to read again after the treatment because I was, nothing was there [laughs] oh something was there but, it was very difficult, I find it spelling's atrocious [laughs] I carry my dictionary around with me [laughs] and I just think that also that what I'm doing now teaching it's very-very difficult 'cos I've got to revert to the dictionary [laughs] all the time [laughs]. So yeah it's-it's pretty much, you know, if-if you've had cancer it doesn't stop after treatment it's an ongoing thing probably for my, for the rest of my life which is hopefully not a bad thing, 'cos if anything goes wrong again if I, you know, that they will catch it very, very quickly rather than just wait around for a couple of years [laughs].

Said she was bullied at school but the head teacher denied there was a problem.

But looking back on it I mean I hope that obviously bullying is such a thing in schools now that, you know, if you are different and you, you know, have got something wrong with you or you had, then it's, it's very difficult 'cos your parent, Mum, my Mum had to teach there and she had to put up with the Headmaster and all the rest of it, and his comment was, 'There's never any bullying in my school'. And I, you know, I used to come home in tears, didn't want to go to school, lost a severe amount of weight, very depressed and I think that sort of cultured dawns for the rest of my life where I lost of my self confidence, I wouldn't, wouldn't go out, wouldn't, wouldn't do anything was literally hip-to-hip to my Mum and that sort of put her down as well so I mean, although, you know, it is the, the Big C it's, it's very much on family life as well and luckily with my family they've been very supportive. Unfortunately I lost my Father at the age of eleven, he also died of Cancer so my Mum met her partner called [name] and he's very supportive. I don't tell, we don't let on much to him because obviously he doesn't need to know kind of thing it's sort of very kept in, kept between me and my Mum and my sister.

How old were you when you when you started to be bullied and changed schools?

I changed schools at the age of I think it was fifteen.

Okay and for how long did the bullying occur or went on at that school?

It was about a year I came I was very, very lucky to w, well not win, to have an opportunity to go with, with a charity to Florida my Mum nominated me with some other friends to go to Florida and that's when the-the extent of the bullying started 'cos it was flashed all over the papers that I was, you know, I was the, the lucky, there was three of us going, all from the same year, year group as me, and we were they decided that, you know, to get some publicity in and, and it's when the publicity went in that the bullying really started to take effect.

She explains why the consultant is reluctant for her to have her keyloid scar removed and what it...

I had a Hickman line put in and that was left in for two and a half years. Usually they leave them in for two years, but for some strange reason I got slipped through the net [laughs] but that's when the sort of problem started when the line got taken out I was left with a quite a big cigarette burn on my chest. They decided that the next thing was that they would operate on it, to take away the rise of it and unfortunately then it started to grow. I was then referred back to the Hospital where I was given more tests some injections into the scar to try and reduce it unfortunately that didn't work and it was still growing I was then referred to s London I don't remember the hospital but it [laughs] was quite a big hospital in London and saw someone there. But they said that they would be happy to operate but I would need consent of my Consultant down in here. Unfortunately [laughs] my consultant wouldn't give me the okay due to the operations being given radiotherapy again so I'm now left with a Keyloid scar on my chest which is unfortunately not going to get any better [laughs] just probably worse. Which is, being a lady that I am of twenty-two quite self-conscious I don't wear low cut tops everything comes round to the neck

Okay, why did the Consultant didn't like the idea of you having radiotherapy again?

I like think face-ably it could cause more harm and cause the Cancer cells to come back again but they had no, no information to say that it would, it be like a fifty-fifty chance. In my view I was, I, I would had wanted that chance taking place and have the operation because I am a girl of twenty-two and, you know, I, I don't go swimming, I don't go, wear low cut tops and I do get asked loads of questions, 'What is that?' And I don't tell everybody about it because then I get sort of the treatment where I'm sort of protected and I don't like being protected, I mean I'm a fairly one-on-one girl, I do everything and if I want to do it, but luckily I just make up I've been shot by [laughs], shot by an arrow and it's [laughs]. But certainly when I do tell people they are very sympathetic and they be, once I've told them they don't bring it up again, that, you know, that's, that's final.

Being within TOPS, the group that I belong with, it's quite funny that I'm the only person that's got scar just like that, it's quite surreal thinking, 'Well why I'm the only person?' You know, there's [laughs] sixty, seventy people out there all had sort of similar situations and I'm the only person that's got, got the scars, so I did bring that up with them and they said, 'No, it's definitely just, you're, you're just, you're the odd one out the bag as such'.

[Laughs].

Which is [laughs] I supposed it's okay, I'm quite individual [laughs].

She has participated in a support groups for six years and at the same time her social life in...

I have my friends within TOPS and I have my friends within work, majority, obviously all TOPS members know [laughs], you know, that you've have had Cancer.

Can you explain to us about TOPS?

TOPS is a charity that was created ten years ago, we are now in our eleventh year. It was a, a group that was decided to have for people that have had Cancer and they had originally started just as a, as a summer holiday a week getaway with about twenty-two children they bring in Nurses, Doctors, volunteers for the week and you go away and you have a real good time. Try, I mean, although people might still be on treatment or just come off treatment it's, it's a real good feeling to be with people that are like that and also another, another aspect is that, you know, you see them but unfortunately the next time you might see them might, you know, they might have passed away or something, but there's that support in there if they have passed away that, you know, you support everybody else and that's, that's sort of like really good.

How long ago did you become'?

I joined six years ago and haven't looked back since [laughs], and

So you were sixteen?

Yeah. And it was literally because there was no poster so it was thanks to one of the Social Workers actually in Hospital that sort of gave me the details and said, 'Oh you join, you must join'. To get all the details and I joined and that's where I met [name], [laughs] and few other of my friends, unfortunately I only met [name] a couple of times 'cos obviously she wasn't really well while TOPS was, was her head, but yes I mean it's, it's growing, it's really growing quite rapidly now so.

So it has made a big change in your life?

Definitely so, yeah, as I say, you can talk about it with friends, you can make funny jokes about it and it's not gonna go like really serious kinda thing, 'cos they know where your coming from, which is really, really nice, really nice and.

And the other friends are from work?

From work yeah. They don't, some of them know, I mean I h, I had to have a full blown medical when I first started and obviously what got written on the medical had to go there so I believe some of them know but I tell them if they need to know. I based it on that, on that really. I mean I'm fit I hope I'm healthy, [laughs] so I'll see if it's not affecting me as such then it obviously won't affect my work. But I, obviously I need to take time off for hospital appointments and all the rest of it and they are aware of that and they are very understanding that I need to take time off and if I do take time off then I just re-make up the hours somewhere else and they're fine about it, but I, I sort of have told a few people and then they were sort of like shock horror because they didn't believe, they didn't, you know, look at me and think, 'Oh God, you know, your pretty okay' [laughs]. So I tell them if they need to know on the basis really.

Moving schools meant she missed out on getting the qualifications she needed to go to University.

Yeah, I was fairly sort of when I, when I got into Secondary School the only unfortunately thing was that my Mum taught there, my Auntie taught there all my cousins, relatives were there, so it was quite difficult that to the case of bullying was quite a-a hard thing, 'cos I-I got bullied quite severely. To the, to the extent that my Mum decided to pull me out of school and I was put into a special school and I didn't really want to see myself as special as such, I mean I was an unique, unique person, just wanted to get on with education, just wanted to get good grades, wanted go to college, wanted to go to university, and unfortunately I didn't get my GCSE results because I was only, I was literally taken out of mainstream education at in Year Nine and then shoved in to another school which put me up a year, they put me up a year because they didn't think I was I shouldn't have be, I should have gone into Year Ten rather than Year Nine, so I literally missed like sort of a year's work, so I couldn't do my GSCEs which I was really upset about 'cos I really wanted to do those. So they did something for me called Welsh Board, I did fairly well, I mean very well compared to everybody else and then, I think I got six merits, four distinctions and one pass, which then put me on the next stage to do my GCSEs at college. But yet again because I had no qualifications as such, I went into college with just these Welsh Board qualifications and then and I saw a person at college and they said, 'Oh no you'll have to do a course'. And I, I really wanted to do my GCSEs and the only GCSEs that I did was my Maths and my English. And unfortunately I didn't do so well in my Maths but my English I got a C in with a lot of help from my Mum and from people in college.

I really wanted to do my GCSEs and I wanted, as I say, I wanted to go to college, I wanted to go to University but unfortunately because I couldn't do what I wanted to do at college 'cos I didn't have the GCSE grades I didn't go to University, which I mean I, I look now, I, I don't regret not going to University but I would have I would have liked just to.

You can still go?

Yes [laughs], I look at my, I look at my other friends they've all got their BAs and [laughs] 2'1s [laughs], but as I say yeah, there I think there might be still time, or there should be still time for me to go so it's just picking the best park, 'cos at the minute I'm enjoying my life as such, it's, it's finally got back on track and I am enjoying it so [laughs], yeah.