Interview 08

Age at interview: 21

Age at diagnosis: 18

Brief Outline: Diagnosed February 2001 with high grade, stage one Non-Hodgkin's lymphoma. Treatment' eighteen weeks chemotherapy; treatment changed after second biopsy and lasted 18 months. In remission since 2002.

Background: University student; single; living in shared accommodation, does voluntary work for Teenage Cancer Trust.

Her school organised for her to do A level course work and exams at home.

School-wise, once I'd found out what was going on, I told my teachers, and my exams were going to run into my 'A' levels, so they arranged for me to take my 'A' levels at home, because the thing with lymphoma treatment is that it affects your white blood cell count and, therefore, the chemotherapy attacks your white blood cells, and you lose your immunity system. So for me to go into school, even when I was feeling well, was going to be a bit difficult. I could have caught something quite easily, like a cold, or flu, and if you get anything like that when your immune system's down, you have to start taking a lot of antibiotics, and they don't want, that's not something that they want to expose you to, because, obviously, you're fighting off enough as it is. So, in terms of the three weeks that you have off, after you have the chemotherapy, the first week... it, for me, was spent in bed. The second week, my immunity system was so low that I couldn't go anywhere, I couldn't, certainly couldn't be in school. But for the last week, I would be okay, so the teachers organised that they would give me work to do at home, in that second week when I was feeling okay, but just couldn't go into school. And then for the third week, I'd be in school. But then I could take my exams at home, so that I wasn't in a big exam hall. So that, that worked out quite well. And they contacted the universities and said, you know, 'She's still going to be doing her exams, but the Exam Boards have said it's okay if she just does 50 per cent of each exam', so I had four English Literature exams, I only did two. 'And then they'll double the marks, so she will come out with these grades. But if she doesn't get the grades, if she's predicted, this is why'. And my first and second choice then wrote back with their responses. So that worked out quite well, in terms of school.

Her GP consulted with another colleague because he wasn't sure what was causing the lump in her...

But she was quite worried because she said, 'It could be appendicitis', so that's when she took me to the doctor's, and they felt my stomach, well, my first GP felt my stomach, and he obviously felt a lump, because he asked me if I was pregnant, and I said, 'Not unless it's the second coming of Christ', which, I think, was probably the wrong thing to say, because he was quite a religious man, I think [laughs]. And no, he didn't look very impressed by that. But, yeah, so I said, 'No', basically, and he said, 'Well'' he could feel something and he wasn't sure what it was. So he disappeared and he brought back a lady who I hadn't met before, but she was another GP in the practice, and she did the same tests, the same feeling of the stomach that he'd done, and said, 'Yeah, there is definitely something there. We need to get it checked out'. So they did a urine test, and I went back the next day, and the urine test had come through that there was absolutely nothing wrong at all. So they then said, 'Oh, perhaps it's a cyst'. 'We're going to send you for an ultrasound'.

Describes her biopsy, which was done after a CT scan showed a 'big lump'.

And I remember sitting down in this room, after waiting for a very long time in the waiting room, sitting down with the gentleman who'd done the CT scan, and his sort of assistant, and they sat me down, and they said, 'Right. You, it's a big lump, and it's either a lymphoma, or a massive organised haematoma. We're not entirely sure, so we're going to take a biopsy'. And again, I didn't ask what a lymphoma was. I don't know what was going through my head, because usually I'm, I like to be in control of whatever's going on, but I just didn't want to know. I, I thought, maybe, again, 'If I ignore it, it's going to go away'. But I knew that, somehow, a massive organised haematoma, whatever that was, was going to be better than lymphoma, so I was lying in bed every night, going, 'Please, let it be a massive organised haematoma'. 

So I went in for the biopsy, and a biopsy is where they put a needle into, and take a core, a very, very small core, out of the area where they think the tumour is, and then they can do tests on that core of material, and test what it is. And you can't then move for a little while after you've had the biopsy, because they're, they're worried about bleeding and that kind of thing, so I was lying in the hospital bed, and they eventually let me go at about 12 at night, and they, they told my Mum that I'm not allowed to go out, I'm not allowed to do anything, so that at that first time, I just went back into school the next day, and I was a little bit sore, but I was okay and just got on with everything. And I wasn't, I didn't tell anyone I'd had that done, because I knew that there was something definitely wrong now [laughs].

A second biopsy found that her lymphoma was more aggressive than originally thought and she...

I went in for my second treatment. I went in for the blood test for my second treatment, and they'd had the results from my second biopsy thing, and they sat me down, and I thought they were just going to give me the blood test, and they were just discussing the blood tests results with me, and then they said, 'Oh well, actually, we've had the biopsy results through, and your type of lymphoma is really quite aggressive. We do think that the chemotherapy that you're on will probably do the trick, but there's another type of chemotherapy which we think would work a lot better, and we think it gives you a lot better chance of survival'. And I sat down, and I said, 'Right. What are you going to tell me?' Because I knew that it was going to be harder. There was just something in the consultant's face. And he said, 'Well, you're on an 18-week cycle right now. This one's 18 months'. And my Mum sort of went, 'Ooooh'. And I went, 'Right. Where is it? Give it to me now' [laughs]. And he said, 'Are you sure you don't want time to think about it?' I said, 'No, if you think it's going to give me a better chance of survival, I want it. I want it now'. And I didn't go back to school after that because it was a treatment called LSA2L2, or LT, I think, and it was a, a leukaemia style treatment it was very, very intensive to start off with. I had three months of intensive chemotherapy, for which I was mainly an in-patient. They did let me go home every so often, but mainly I spent the time in hospital, because then they could check my blood levels, I was there to give the chemotherapy to on a daily, or twice-daily, or every other daily basis. And then, for the other 15 months, I'd be treated one week in three, and I could spend that time at home. So that was quite weird, because I hadn't been expecting that at all, I'd expected to, you know, have a couple of weeks off school and then go back to it, and suddenly I was just ripped out of that whole situation. But because it happened so suddenly, again I didn't have time to react, really, to it. That was just, it was what I had to do, and it was going to make me better, and that was fine. 

Feels stressed every time she goes for check-up appointments and she does not want to take her...

How do you feel when you have to go back for a check up?

I get stressed every single time. I've got a check up coming up in a week, and I can already feel my stomach tensing up, thinking about going back. And it's not, it's not the place any more, because the place used to make me nervous, but the place actually is quite comforting now, because I feel like I'm going back, and if something is wrong, they can deal with it. And I love going back and seeing all the people all the nurses that treated me, and they always want to know how I am, and I want to know how they are, and how their children are that they used to tell me about all the time. But I do still get really nervous about it, and I think, to an extent, that nervousness is almost built up by me, because I feel if I don't get nervous about it, then I might go back, and something might be wrong. It's almost like'

It's like a defence?

Yeah, it's like a defence. It is. It is a defence mechanism. If I don't worry about it, then I'm taking everything for granted and then, and that's something that really scares me. I've learnt so much from being ill, and if I start forgetting it, then maybe the whole point of me being ill will come back, and maybe I'll be ill again. So I mustn't ever forget all the lessons I've learned from being ill. That's really important.

She was treated in an adult's ward and had very few opportunities to meet other teenagers and...

You were in an adult'?

I was in a, treated in an adult unit, yeah, in an Adult Ward. There was a Children's Hospital next door, but because I was 18, I was too old to be there. So there were, there weren't really any facilities for anyone my age, because there weren't' it was quite an uncommon thing for there to be someone in there for long periods of time, that was my age. So I couldn't talk to anybody else in the same position as me, really. So I didn't know whether the feelings that I was experiencing were legitimate. I mean, obviously they were legitimate, but I didn't realise, I didn't know whether I was supposed to be feeling like that, because I couldn't ask somebody else. And I think that was quite hard. So a lot of the time, if I didn't talk about something, it was because I thought, 'Well, maybe it's just me. Maybe I'm a freak for thinking that'. And I now realise that most people probably feel like that, but I couldn't ask anybody, so I didn't really know. And, as I said, I couldn't talk to my friends about it, because they weren't in that position, so it was quite difficult.

And what about other young people in hospital, could you, did you meet people your age?

I met one girl who was introduced to me, while I was having the three month induction bit, the intensive period in hospital, and she was introduced to me because she was having CHOP, I think, so she wasn't spending large amounts of time in hospital, but she had non-Hodgkins lympho' no, I think she had Hodgkins lymphoma, actually, and she was a couple of years younger than me, but we got on quite well, and we did used to chat about things, and I'm still friends with her now. But because I didn't know her really well, there were a lot of things that I wouldn't go into in detail. And I met one girl who was about four years younger than me, who was in, because she had cervical cancer, so I, I used to chat to her a little bit, and my mum used to chat to their parents, and I think that was, made it easier for her, because it must have been awful for her, she just didn't, she was in hospital with me all that time, and I think that was the only young people that I met when I was actually being treated, in all that time, because it was mainly sort of 70+, the age group that was in there.

Young people need more than just a good doctor, they need a good listener.

I think, when you're dealing with a child, or when you deal with an adult, whatever's the matter with them, there are quite set ways that you can deal with them, whereas, sort of, with adults you can be very professional, with the child you are mainly dealing with the adult, or you are dealing with this small child who you don't really have to explain anything to, you just have to make them feel a bit more happy in the situation that they're in. With teenagers and sort of the early twenties, you have to put things at their level, and, therefore - and they don't want to be ignored - they don't want you to talk to their parents instead of them, they want to know what's going on and they need to feel that you're talking to them on their level. So, and that's quite hard to gauge, but it is something which is really, really important. It's important not to be too professional and over the top. The first GP that I had actually made me so scared of going to the GPs that I changed GPs after that, and it was, it was his manner. His manner was very professional and it was brilliant, and it was brilliant for everyone else. And until then, I had never had a problem with him. But because it was something that I was so frightened about, and he was so professional about it, I just couldn't deal with it at all. I needed someone that I could actually go to and talk to about things, so I changed to a GP and she was lovely. She, she would sit down and she would ask how I actually was and that kind of, that kind of thing, so from the' from the sort of general practitioner and sort of nurses perspective, they need to be someone that you can chat to about things as well as the medical problems. Especially because I was in hospital for such a long time, I did talk to nurses quite a lot about... random, the Ball I was missing, and what all my friends were wearing and that kind of thing. So it's more of a, a social worker type side that a nurse or a doctor needs to have if they're dealing with young people, just to get on their level, and talk about the kinds of things that they want to talk about, especially if they're in for a long time.  

Understanding that you might not necessarily want to be the object of 50 medical students coming round. I never minded, but I know people who, one of the girls I was treated with, really hated it, but she didn't, she never felt that she could actually say so. And because you're at quite an embarrassing stage of your life, you don't necessarily want 50 gorgeous male students looking at you when you've got no hair, and you're, like, five stone. It's not really something that you're always going to feel comfortable with. So I think that's something that's quite important to consider. I can't think of anything else. I'm sure I'll think of something else that's really important [laughs], but I can't think at the moment.

"I'd built up this massive thing in my head that I was disgusting, because other people thought I...

I was already pale, and I knew I was losing weight, and then I was losing my hair too, and I just' most of the time I didn't care. Most of the time I was either in hospital, where everyone had cancer and, therefore, that was okay, or I was at home, where everyone knew. But if people were coming round to see me, I just, I couldn't bear the idea that they were looking at me with either pity or disgust, because that's what I decided it was. They could, they just thought I looked disgusting, and ill, and ugh. And that, I think, that was something that I didn't really realise in those three months, I realised it every so often, but it was something that did become quite an issue for me - my self image and self confidence really took a downturn. It was never great, but [Laughs] it was'

Can you tell me a little bit how you felt, when you look at yourself in the mirror?

When I looked at myself in the mirror, I didn't really see anything that different. I knew I looked pale, and I couldn't wear a lot of make-up, because my skin got very, very sensitive, and I couldn't wear mascara or anything on my eyes because my eyelashes and eyebrows, luckily, never fell out, but they were very weak, and if I'd put anything like that on, it would, it probably would have forced them to fall out. So from that respect, I could never do anything to make myself look better, but... I, it wasn't, it wasn't how I thought I looked, it was how everyone else thought I looked that bothered me so much. I didn't really have an opinion on how I looked. I was ill, I knew I was ill. I didn't really care how I thought I looked. I don't think, as far as I can remember, it was, it was the fact that when I walked down the street, I was convinced that everyone else just thought I looked repulsive, and I couldn't look at people. It was almost like I developed this technique of walking down the street like this, and I took in exactly what was in front of me, and I didn't take in anything else, because I couldn't bear the idea that people were looking at me like that. And it started off with just, just ignoring random people walking past me, and it got to the stage where I couldn't talk to people that I didn't know really well, because' I don't know, it's quite a hard process, I know, I didn't really realise it was happening until it was there and I couldn't do anything about it. I just didn't have the confidence to talk to anybody, because I'd built up this massive thing in my head that I was disgusting, because other people thought I was. It's weird, because I didn't, it wasn't so much that I thought I was disgusting, because I knew why I looked like that, and I understood why, and I think it was, I think I started to think I was repulsive because everyone else, as far as I was concerned, thought I was repulsive. It wasn't something that started with me and went to other people, it was something that started with other people and came to me, which is a strange thing, actually. I hadn't thought about that before. I don't know where that came from [Laughs].

Was told that there really wasn't time to harvest her eggs. Worries that if she is infertile it...

Did they give you information about it?

When they first, first started on CHOP, they said, 'The likelihood is that this treatment will make you infertile, because it's so intensive. There are things that we could do, we could extract eggs, etc., but to be honest, you haven't got time'. So I just said, 'Right, let's just get on with it', because, I mean, 'if you don't make me feel better, if you don't make me better now, then I'm not going to have children anyway'. So I started on everything now, then. Then they changed the treatment, which seemed more intensive, therefore more chance of being infertile. I didn't get any more information about it. My periods stopped for the first part of CHOP, probably just because of the shock of all the treatment, but they did actually continue, quite sporadically, but they did actually continue all the way through my treatment, so when I finished my the treatment completely, I went to the consultant and I said, 'Look, you've not said anything about this. This is how things are. What do you think my chances are? Should I go and have tests?' And he said, 'Well, you, you do need to have tests if you want to know for certain. But because your periods have continued, then the likelihood is that you probably are actually okay'. But I didn't get that much information about it. I think it was probably just the circumstances, that time was quite short, because when the consultant told me about the tumour to start off with, he went, with a man's fist, 'It's this big', so I think it was quite, quite a big thing, they just needed to get on with it and get the treatment done. They didn't really tell me much about it.

Have you had tests or not?

I haven't had any tests. I don't know now, at all. And I will have tests at some stage in the future, when it's important for me to do so and I'll have children anyway, whether I adopt or -

Okay, so you -

- or my own.

- you have thought about it.

Yeah, I have thought about it, because that is something that worries me. I do think, or if I am infertile, is that going to affect my chances of relationships with somebody in the future? And what do I tell them? Do I tell them that I don't know whether I'm fertile or not? I mean, it's not something you introduce, 'Hi! My name's [name]. I might be infertile' [laughs]. You know, it's just not something that you say to someone, is it. So it would have to be something that would come quite in a late relationship, and then, and then do you feel like you've lied to them? I don't know. It's something that I'll have to think about in the future, I think, and then I'll have tests done and that kind of stuff.

Her mother, father and sister all helped her during her illness but in very different ways.

My Mum was the emotional support, and she was the one that always used to take me to the hospital, apart from' because, mainly because she was the one that took the time off work, unless she actually couldn't do it, and then my dad would take me. My Dad sort of dealt with things by being the medical expert. He would read everything he could, he would watch everything that he could, and he learnt to do the GCSF, which meant the community nurse didn't have to come out. And I also had a Hickman Line, which is a line, it's about this long, and it's got two or three cannulas on the end, and it goes under the skin to the neck, and then it goes in down one of the main veins into your heart, and they inject the chemotherapy into that, rather than having to put it in your veins all the time, and I think they did that because, otherwise, my veins would have just collapsed, because they couldn't have taken that amount of chemicals. So he learnt how to clean them out. And I think that was his way of making himself feel useful, by being the' the practical one. So we, he was what I'd talk to about the practical side of things, and Mum was who I talked to about emotional things. 

My Sister found it very hard to deal with, and I didn't really talk to her about being ill at all. She used to spend a lot of time with me, she used to give me a lot of hand massages, I used to really like having hand massages. And I think she was more sort of someone who just used to come and sit with me and be company. But she was going through a lot at the time as well. I mean, she was sort of 17, 18, for most of the time that I was ill, and that's quite a difficult stage in your life anyway, so I didn't really want to burden her with the emotional side of what was happening, so we'd just chat about what was going on for her at school, and she'd tell me about her 'A' level studies, and I'd say, 'Oh, you're doing geography? Oh yeah, I did that', and help her out with her work, and I just tried to be the older sister to her, really, and I think she tried to just be understanding if I needed to talk. And she had a hard deal, because if she ever had a cold, she couldn't come in the same side of the house as me, and' and the attention that she got was very dependent on what I needed, so I always felt very guilty that I was taking it away from her, so I didn't really want to talk to her about being ill that much, I would try and talk to her about her. So from that perspective, she, she sort of' I think I experienced quite a lot of being 18, through her, because she would come and tell me about who she'd kissed at school, or that kind of' this sixth form party that she'd been to, which' I mean, I went to a couple of sixth form parties, but not really, because I sort of got pulled out at that stage, so I experienced a lot through her, I think. And so that was her role. She was my 'being 18 guru' [laughs] because I never got to be 18 really [laughs].

Provides advice to other young people who had just been diagnosed with cancer and to those who...

If your hair is going to fall out, have it cut off, because waking up with strands of hair on the pillow is not nice. If the anti-sickness drugs that you're having aren't making you feel better, please ask for different ones, because there are about 12 different types of anti-sickness drugs, and I didn't realise to ask, to start off with, so I was just putting up with feeling sick. But there are so many types that work in so many different ways, that there will be one that will work for you. I'm not going to say 'Don't be frightened', because that would be stupid, but, cancer is something that's very misunderstood by most of the population. Considering so many people get it, that's quite' it's quite strange. But it's something which strikes fear into so many people, and it's so well treated now that the chances of survival are so much higher, so it, it's a horrible thing, but you can get so much from it if you choose to do so. I feel, personally, that I, it's not, it's not that I'm glad that I had cancer, but I wouldn't take it back, because it's given me so much. I'm so much closer to my family. I know what I want to do in the future, and it's changed, completely, from what I wanted to do before I was ill. I've got a lot of life perspective now, there are so many things that I don't moan about to the extent that I moaned about before, and I feel much better able to empathise with people if they've got something that they're worried about, because I had so much time to think about things when I was ill, that I have so many more opinions that I've formed on things. 

It's hard to talk to people, but there are so many people out there, find someone that you can talk to, because my, in my experience, not talking to people is what made me depressed. Keeping things inside, and me feeling like I was the only one, and I was a freak, was really, really hard, and you're not, there are so many people out there who are exactly the same, going through exactly the same things as you, so whether it's, whether you talk to friends, whether you talk to family, whether you talk to a counsellor, or whether you talk to someone that you get in contact with through a charity, do it, because it really does help. And try and understand how other people react, react to you, as well, because some people are brilliant. Some people react fantastically, are really supportive. Some people don't know how to deal with it, and if they react badly, it doesn't necessarily mean that they feel badly towards you, sometimes it's just that they can't they don't know where they stand, and they don't know quite what they can do to help you, and sometimes they need a bit of a helping hand. Much as it, much as' as much as it's you who's ill, and, therefore, if people should be helping you, they need you to help them along as well. If you don't tell them what's wrong, they can't help you. If you don't try and understand what it's like from the other side, watching a friend or a family member be ill, then you can't help them, and then they can't help you. So really communicate with people, because it does help. And it's hard, but it, it does help a lot.