Interview 17

Age at interview: 26

Age at diagnosis: 17

Brief Outline: Diagnosed in 1996 and 1999 with a brain tumour (medulloblastoma). Treatment 1996: surgery and radiotherapy. Relapse in 1999: tumours found in the brain and spine. Treatment 1999: chemotherapy and bone marrow transplant. Having hormone replacement therapy. In remission.

Background: Educated to university degree level; works part time for a cancer charity. Single; lives in her own flat and parents live nearby. Participates in the activities of TOPS support group.

Visited her GP eight times in 6 months with headaches and neck aches and started to think she...

It started around September '95. I started to get headaches and some pain in my neck as well. I went to the doctor who I hadn't really seen very much, but I went to see him and he said there was nothing wrong with me. Again in about three, four weeks I still had these headaches and these neck aches and I was finding it you know quite hard to sleep and again I was told that there was nothing wrong with me.

This carried on for another month, I went to see him again. Again I was told there was nothing wrong with me. This went on for six months and I went to see my doctor eight times, this was my local GP, and he actually said there was nothing wrong with me. And I actually thought I was imagining this pain because obviously you trust your doctor, well I did because he obviously, he is trained to understand what the problems are and if he said 'There's nothing wrong,' there's nothing wrong. That's what, what I was thinking anyway.

So I began to think that I was just imagining this pain and it was getting worse and worse and I had to study for my A Levels, this was very, very hard because the fact that my neck was so very sore that I found it hard to look over my work to do lots of work and revision. And again I had the headaches as well so it was, it was quite horrendous.

Is grateful to a junior doctor who picked up a sign of her brain tumour during an examination.

And so the final time I went to see my GP my mother came with me and suggested that if he could refer us over so I could have this appointment. The next day we went to the hospital, my mother and father went off to work and left me there because I thought, I was only having physiotherapy, it's not exactly a very difficult thing to have. So I was there sitting in A & E for about three hours watching people going through with, now I think about it now like what I've had and I think about what they had, people going in with broken fingers and toes and twisted ankles and...

Anyway finally it was my time after I'd waited for about four or five hours and I went through. And before you see a physiotherapist you have to, you have to see a doctor who actually, she was an SHO doctor, a junior doctor and she looked, she tested all of, all of my body finding out if there were any problems anywhere and she couldn't find anything wrong with me, whatsoever. And the final thing she did was to look in to my eyes and I wondered 'Oh there'll be nothing wrong if,' obviously. And then she said 'Oh I just have to go and get something,' so she went outside the cubicle and about six doctors came in and I realised there must be something wrong but I didn't know what it was. And I thought 'Well I only came in for physiotherapy so what's wrong?'

And presumably you must be very grateful to that junior doctor?

I was very, very, very grateful. I would never have believed really that an SHO doctor, a senior a junior doctor would be able to diagnose something like this. When she looked into my eyes she saw the raised pressure that it, its called papilloedema and this is significant for, to say that there could be a brain tumour. So I think she knew what was wrong when she looked in to my eyes. Yeah.

She was at university and enjoying life when she was told her brain tumour has reoccurred. This...

Yes, I went to university I was in my first year, I had, just being out and meeting lots of people at university was great, I was just having a great time. And during my first year I had a regular scan and it had showed that my cancer had come back again and I'd been free for a good two years. 

Anyway so this was, we went to a regular check-up and I remember my consultant and my surgeon were sitting in the room and usually when I go in they have a really, like they joke and they laugh and you know and they looked very grim. And I knew something was wrong and they, they told me and I basically had hysterics. I just told them that I didn't believe what they saying, I needed to see the scan myself to actually believe that it was back again. And I saw that there were tumours in my brain and down my spine as well. And it was then, only when I saw the scan which was on the wall in the, in the consulting room that I believed what they were saying.

And, you think 'Oh gosh its not here again,' and [chuckles] kind of thing. And this was in my first year at university in 1999.

So you were 20, 20 years old?

Yes I was.

Yes I do. I do think 'Why me?' 

Okay.

And I did used to think about that quite a lot.

When the first time?

Yeah the first time and the second time but you've just got to realise that things happen to certain people and you just haven't got any control over it. So you just, you just have got to be positive. Because I was 17 years old and I wasn't prepared to die then, I was going to fight everything. And you just, you have to have a positive attitude towards it all.

And the second time did you also have this positive attitude?

Yes I did.

It was a like a journey going through life it's an experience that I had to get through. And I felt that I would, I would get through this. Fighting nail and, you know fighting for it and I think I've got there hopefully [laughs]. I've had it twice. I don't want it again [laughs].

After an earlier experience in an adult's ward, she jumped at the chance of being in a children's...

Yeah. This time my treatment was different. I was, I was 20 years old and because I'd had such a bad experience in, in the hospital that I had my original surgery, surgery at, my consultant actually asked me if I'd like to have my treatment in, in the Children's Hospital. I, I jumped at the chance because I thought at least they'd treat me as having a child, a childhood tumour. And my treatment included a long session of chemotherapy, about six months of chemotherapy and a bone marrow transplant. It was an autograph which means I had my own bone marrow back.

My treatment over the years has just been excellent. I hear people moaning about you know the NHS but all my treatment has just been brilliant, fantastic. And you know I just can't say 'Thank you' enough to all my doctors and surgeon you know because they've just been brilliant. 

And again I lost my hair during my chemotherapy [chuckles] and again I got another wig. And again I didn't want another wig [laughs] because I had quite a few hats already from my time before. I met, I met lots of people in hospital who obviously had cancer as well and they were going through the same thing of chemotherapy and different things so it's like a home from home, you know just going in to a home [laughs]. And its like a home environment because where we were you know there was a kitchen, your parents or you could go to the kitchen and have what you want to have. You know if you felt like having it or not, it was very amicable, I mean it was just, it was just so gentle and it wasn't like 'You have to do this,' or 'You have to do that,' if you didn't want to do it, unless it was a medical treatment that you had to do. And 

How many blocks did you have within those six months? Do you remember? 

I have a feeling it was about six or seven. 

It was about one, one or two a month and I think because it was, it was about a week, it was about ten days each bit of treatment so I wasn't in hospital for six months it just was over a period of six, seven months.

I was allowed home for a week, a week or so in between the different treatments of chemo. I found going home was just a little bit of a break from being in the hospital. But then you go back and you see the same people there [laughs]. And you just, I, I'd have my friend who was 16 next to me in the same bed. We'd just have our designated beds [laughs].

Says that she has never needed professional counselling because all her friends at the support...

Yeah. It was a, it was a bit different, I felt slightly different from my friends. When I was diagnosed and they all went off to university it was very hard then.

In which other ways did you feel different from them?

Just in the fact that I was jealous that I couldn't go as well [laughs]. I wanted to go off and I wanted to do the normal things that students do which could be good or could be bad [laughs].

I just wanted to have a normal life.

But this obviously was impossible.

But then joining this Teenage Cancer Group, do you want me to mention?

Yes, yes you can go ahead, you can say the name of the group?

The Teenage Cancer Group is TOPS, its Teenage Oncology Patient Support Group and through there its a charity affiliated to CLIC, Cancer and Leukaemia in Childhood and they're based in [place] and joining that and meeting other friends and other people that have had the same experience as what I've been through has just been a life line, its just oh, I, most of my friends that I have met have had cancer and they will be friends forever.

When did you join them?

'97, the year after I was diagnosed I remember the first trip we went on, we went climbing down at one of the, St Warburg's Church in [place], it has a climbing centre, and going there and meeting other people was just, it was just amazing, I thought I was on my own but then if I meet other people and see, seeing what they're going through as well you realise you're not alone and that there are lots of other people, lots of other friends that you can make and -

So you did a lot of activities?

Yes.

Like climbing and?

Yeah, yeah we've done lots of, and people obviously, obviously we have our problems, we have different problems but they all seem to be very accommodating. It, it was just joining, joining the TOPS and it's just been a lifeline because I, I wouldn't have been able to cope on my own.

Okay who suggested to you, you join?

It was, it was my Social Worker at the hospital, she dealt with all my schooling and told my mother and father about jobs and various things. [Name] she was very, very good and she suggested that I join, join this group just to be able to meet other people that have been through the same things as you. And, I'm still there [laughs].

They have provided you with a lot of emotional support?

Yeah I've, I've never needed professional counselling because all my friends are my counsellors, we just, we just all, we talk about things that people would, can't believe we talk about like we laugh about the fact that we have no hair, we laugh about the fact that we can't do certain things. And, and I don't, you can't understand unless you've been through it and it's just been a life saver.

Discusses that not everyone who wants to will be able to adopt or foster a child.

And among your friends that have had cancer, your female friends it is an issue that you talk about?

Yeah we do. Yeah. It's a thing that we talk about along with losing our hair and laughing and all these other things. We talk about adoption and we talk about fostering and we talk about everything else. It just seems its not as easy as what it is because they say, people say if you can't have children 'Oh, you can always adopt,' or but you, but its very difficult because when, looking at, I've had a look at the adoption thing and you have to confirm to all of these certain things like you have to be the right weight, the right height, you have to con, you know be the right sort of person. You have, and they have to monitor you like for three years before you have children. And then you, I mean they don't, they do discriminate about having cancer and certain disabilities. And yet people think it's so easy, 'Oh if you can't have children you can adopt,' well its not that easy.

Hmm.

But you know its like hey what I said before, we're all alive so we can't complain [laughs].

Knows that she is very unlikely to be able to have children and says that fertility is one of the...

Now lets talk about, a little bit about long term effects of your, either having had the tumour or the treatment itself and did they told you about that it might possibly affect your fertility?

Yeah. That was, I think its, in, in females, and I'm not sure about males because I haven't really talked, but its, its one of the most important things that you want to know when, well it was the most important thing I wanted to know when I came out of my chemo and everything. And because my, my endocrinologist put me on two lots of oestrogen and all my other hormones and I actually asked her if I could actually see a fertility specialist to find out whether I could actually conceive or, or what the situation was. And, and it looks as if it, I can't have children at all but he said that when I'm ready to have, he's going to give me some very expensive drugs apparently [laughs] to help me conceive but he, he thinks that they won't work anyway but he's going to try them anyway. They, they will help try and then.