Interview 26

Age at interview: 17

Age at diagnosis: 14

Brief Outline: Diagnosed with malignant melanoma in 2002. Treatment' surgery and radiotherapy to the neck area. She has had further surgeries to removed lumps that have developed later. A course of Interferon in 2004. On treatment.

Background: Studying full time for her A' levels, lives at home with parents; ethnicity, white British. She wants to study Philosophy and then to trained as a primary school teacher. Says that she is proud of her scars.

Noticed the sudden appearance of a large mole behind her ear that itched and bled.

I was, I think, about 14 and I was on holiday with my family, and just brushing my hair, and I, when I was brushing my hair I felt a mole behind my ear, that was never there before because I, I would have noticed it before when I was brushing my hair. And it was quite big and so I was a bit worried, and my brother and sister suggested that I go see my doctor because it was quite big considering that it was new. 

So I went to see my GP when I got back and he had a look at it, and he was very much, 'It's fine, there's nothing wrong with it, just leave it, keep an eye on it.' But as far as he could tell there was nothing wrong with it. And then I waited a couple of months and I was, still wasn't happy, I went back to my GP who agreed to have it taken off, so I was referred to a hospital in [place] I think, where they took the mole off and just before, like a couple of weeks before my mole taken off, which was in October half-term, I remember being in school and it was itching and flaking and half of it fell off in the lesson, into my hand, and it started bleeding and I thought that this isn't really right but didn't pay much attention to it because I, I knew I was having it taken off.

All her family (except her Mum) had looked at the Internet. She herself prefers sites specifically aimed at patients rather than those with 'cold' information about statistics and survival rates.

Well unfortunately my Mum doesn't know how to use computers so my mum doesn't use the internet. I've personally used the internet a lot and so has my dad and the rest of my family and friends and stuff. If they wanted to find out about some of the treatments and stuff, I know that they've looked on the internet so that can be very useful. The only problem is lots of the sites are aimed towards doctors and not patients so they can be very cold in their just churning out facts to do with survival rates and successfulness of treatments and things like that which isn't necessarily the most productive thing you can be looking at. So when it's more, if you can find a site that's more aimed towards the patient, that talks about, like you said before, about feelings and helping you make decisions on what you want to do and how you want to, to fight what you've got that's better. Because I have read things on the internet that scared me because it can be, you know, just statistics rather than you know. And statistics doesn't always apply to you it's not, because it can't necessarily be personalised. When you just throw out funny numbers it's easily misconstrued and misunderstood to mean that, that necessarily applies to you when obviously it doesn't at all. You can be the one in a million that, that beats it and, and whatever you know. You can be that one person so'
 

Continued to go to school during her 5 weeks of daily radiotherapy.

But I mean after a couple of weeks I was fine, I was kind of back to school, I went back to for result, and he said that some of them were pos, some of my glands were positive some were negative. And that he was worried that because some of the glands were quite full, that they might have over flown with the cancer cells. So he suggested, after talking with other doctors that I had radiotherapy. And this is in the summer of 2002, so May/June time. But he kindly referred me to [place] which was a lot closer so I wouldn't have to stay in [place] for five weeks [laughs] 'cos that would be a bit mad. So I came down, I was referred to people in [place] who made me a radiotherapy mask which I found quite funny at the time, because they had to put a mould all round my face and it was just quite bizarre after seeing it, that it was like my head and neck that was all moulded. And they also marked a little tattoo so they could line me up with the radiotherapy machine. And I started a five week course of radiotherapy. I went in five days a week, and I had the weekends off.

You stayed in hospital for five days or?

No, I commuted and most days I went back to school for not the whole day. I kind of went back for a couple of hours and my dad would pick me up. But I, you know, I kind of wanted to stay at school. I didn't want to miss out. It was first year of GCSEs and I, I thought it was very important I be there and see my friends and stuff. So I'd go in the morning with my Dad. I'd have radiotherapy on two different machines, one which did the neck and then one that kind of was right behind my ear, just kind of looked a bit like a cup actually [laughs], and they did that on my ear. And then my Dad and I used to go and have a fry-up afterwards as a treat. So every morning I'd have a big fry-up and go back to school, which was fun, I liked that. 

It made me very, very sleepy. I've always been a particularly sleepy person but I was quite quiet and slept a lot if I came home from school I'd, I'd sleep on the sofa for the afternoon. But I was fine apart from that, I wasn't sick, I wasn't ill particularly, I didn't you know, because it was on my neck obviously I didn't lose any hair I wasn't. So I had quite a positive experience of that.

Has had several operations and now knows she needs anti-sickness tablets after a general anaesthetic.

What happened with after they, they removed the lump?

Well, I started getting lumps pop up on the right side of my neck which hadn't happened before. They'd all been very much contained on the left side between just literally my neck and my shoulder, it hadn't gone anywhere else. So I started feeling lumps on my right side and then, they were taken out and were positive, so they decided to do the same operation that they'd done on the left side of my neck, on the right side. So I had all the glands taken out on the right side of my neck, which I actually found out the other day was 67 glands, which is quite a lot I think [laughs]. I didn't realise we had quite so many glands so that was quite funny.

How long that operation lasted?

I think that was about three hours long. I was in for four days maybe five days this time. I didn't stay as long as I did the first time I was in [place] so my friends came up and visited me which was a big help because obviously in [place] they all called and, and sent cards and stuff but it, there's nothing nicer than friends coming over and you kind of laugh and giggle and kind of forget that you're in hospital and you've got drips and stuff up. It was, it was really, it was really nice. That was the beginning of sixth form, the beginning of my A levels. And my head of sixth form came to visit me as well which was lovely. She brought some flowers. And, and so I kind of, I had a better experience of that one. I, I knew the drill a bit, I knew how I was going to feel afterwards, I knew what painkillers to ask for and it was, it was an all round better experience just because I had more. My brothers and sis, my brother and sister could come and see me which they couldn't really do in [place] 'cos it was too much of a journey just to come up for a day and then go back again. So that was just really lovely I, you know, I kind of felt supported and loved and that was, that was fine. 

Recovery-wise it kind of got easier the more operations I had. Because to begin with the anaesthetic was making me feel very sick, so then I knew to ask for anti-sickness so when I'd come to I, I'd feel better. I'd feel in pain maybe but I wouldn't feel sick which has always been quite a big problem. I had the odd bit of physiotherapy for my shoulder because obviously they took a, a part or a whole muscle out.
 

Says that seeing the same medical team has help to build up good rapport and trust.

And then I decided to be based in [place] because I thought it was a long way to keep on going and I'd be seeing registrars instead of Mr [name] who was my doctor. He was kind of like the top doctor and then he had all these registrars so I kind of found that I was seeing different people each time so I thought it would be better to be more local.

Why you found that it affected the communication, the dynamics somehow?

Yeah because it was just, you know if you see a different person each time you're not really quite sure what they know and just your history and you kind of feel like you have to explain yourself all over. And it seems such a long way to see someone that you didn't know and might not know anything about you that we thought, the person who was in charge of my radiotherapy in [place] referred me to someone in [place] just because it would make, if I could see the same person, kind of build up, I don't know a kind of trust between doctor, a kind of rapport, because that was something I found hard, because it was so overwhelming if I didn't see the same person twice, it was just a bit like I wasn't really known, I didn't feel. I mean they were lovely in [place] but there was lots and lots of people that they saw so I just kind of felt more personal. 

The communication links have just kind of built up over, over the, I don't know how long I've been with them about three years, two and a half, three years. You know so it's really good, I'm really pleased with my doctors now, just really, I can talk to all of them really well and they know my situation inside-out and so you can go and talk to them. You don't need to give any history, you don't need to give any reasoning behind what you're saying because you know, if you know them it's not this kind of faceless thing. You can say something and they'll remember what you said the last time.

So it is the continuity?

Definitely, which is something that I, I, was important to me and something that I've got now. It's brilliant because it genuinely is really good. My, the surgeon can take my word. If I say I, 'cos I've got very sensitive hands, I can feel glands very easily on my neck and if I say that I can feel it, he'll make an effort to try and find it and I'll have a scan. Or if he's already doing surgery he'll trust my judgement and have a look to see if there is anything there and so that kind of trust and rapport between the two of us I think is really, really productive because you need to have a doctor who doesn't kind of look down on you. Like I'm superior and so I know everything so you can't possibly know what you're talking about, kind of thing. It's very, you know, I can have a conversation with him. With both, with all my doctors, I have several, I can, you know, I can sit and I can talk to them and you know I kind of feel respected for my opinions so that's, that's good.
 

Has had three major operations to removed glands from her neck and is awaiting another one on her...

Do you go regularly to the hospital?

Yeah I do. I go regularly.

How often?

Well, we've never actually got into a routine, because we'd start saying every three months and then in between I'd start, I'd feel something in my neck so I'd have to come back quite a lot. I mean, recently I've been, for the past three Fridays, I've had to go up to [place], to see my doctor because I've had a few glands pop up again a couple of small ones on my neck. I've been quite fortunate up to this moment, they've all been like 5mm big kind of very tiny ones. But on my cheek at the moment I've got a very swollen gland on my cheek. Initially I thought was wisdom teeth [laughs]. But it wasn't and I had a blood test and unfortunately that came back positive so next week I've got to go into hospital to have the gland there removed. Which will be a two/three hour operation just because it's in a difficult place, it's where all my nerves are so they've got to be careful not to damage the nerves that control movement in my face. Because otherwise I, I you know, I might not be able to lift my eyebrow or I might have a bit of a wonky smile or something like that. But I mean it's something I have to consider, I might have some damage depending on. 'Cos the glands are kind of above and below the nerve so they kind of, they might have to damage a little bit the nerve to make sure they've got all of it out. So that's the next operation and I'm going to have a scar that will come along my hairline, round my ear, round the back and join up to one of my other scars which, I mean I'm not thrilled about because obviously it's more on my face, but I've kind of come on to the point where I'm proud of my scars. Obviously they've faded a lot but it's, it's part of who I am. 

I wouldn't get rid of them because it's proof that I've been though so much and I'm still here, I'm still standing, I'm still fighting and it's part of who I am. If I didn't, you know, the fact that they're so visible on my neck that it, you know, it's, unlike somewhere that can be hidden by a jumper and therefore you kind of can hide it and not think about it. Mine have always been very much on display so straight away I had to deal with the fact that I had scarring. 

So, that was good I think because I, pretty soon after my operations, I was like, well you know I don't mind, it's not too bad. They've all been quite clean. They're not big horrific ones. I've had a few kids ask me before what they are and I, I revel in telling them that it's a shark bite [laughs]. 

Explains two pieces of art work she did: the first is about the meaning of her scars and the second acted as a reminder of her time in radiotherapy.

What I would like you to do now is if you can take us through the meaning of this picture?

Ok well, I did an art project on, I think the title was 'Myself' and I, I decided to talk about hospital experiences but also how, how I felt about the differences I had physically like my scars. So this was an important theme, and I, I was very interested in Pop Art, and so this is my version of the Marylin Monroe, four different faces. And my Teacher took a photo of me in my uniform and this is my original scar that I had from the block node dissection on my left side. And I, I played around with the idea and I got inverted colours and it was just, it was really useful to express my feelings about obviously the scar and I don't know it just, it was helpful and I just found it interesting. I thought it was a fun way to take on the kind of four faces. 'Cos lots of people do the four faces with the inverted colours, and I thought it would be important, you know, something that I can be proud of.

This is the actual radiotherapy mask that was made for obviously when I had radiotherapy. So this is a, a mould of my head and for my final piece in my art project I thought, I asked the radiotherapist if I could take it home, and they let me, and I thought it would be brilliant to use and I, basically, there's a collage of all the letters and leaflets that I got from my experiences in hospital. And I, I put them on the inside of this mask so it's got different, Ward was the original ward I was on and Mad in Maine was a, was a trip I went on and it's got notes that my doctor's written and bits from medicines and stuff and I thought it would be a really good way to show everything that I've been through and it kind of really it just really brings to light everything because it's so 3D. And I've got I found it important to write about where I came from and that's why I've got maps because after doing, taking a photo of myself, I, I thought my scars looked a bit like lines on a map so that was a bit of a, a leap but. So I thought it was kind of grounded by, it's on a pole of where I'm from. This is all the things that I've been through on a base with pictures of my brother and sister to show the kind of support that my family gave. So I thought it was a really good way, and I keep it up in my room as a kind of reminder of, of what I've been through and how far I've come.

Was determined to do well in her GCSEs and found that schoolwork and art took her mind off her illness.

He, he took out the, the lump that I found in my neck and it was positive and I had my exams so I kind of went to all my exams whilst having some scans and stuff. I, I do remember coming in late for an exam because I, my scan had overrun and they let me kind of sit in the corner and carry on later than every, anyone else. So my school were really good with that. They were very understanding, they let me come and go as I pleased, they gave me privileges to sign in and out so if I was tired from radiotherapy or anything, they just kind of let me, I could do that, so that kind of responsibility was really, it was really thoughtful because I couldn't have necessarily stayed all day but. So yeah, I kind of did my exams.

Art was helpful, it was just, it was just something to take my mind off it but schoolwork was like that too with my exams. I, I kind of got through those couple of months because, you know, I thought I'd come so far even missing the best part of term, term in the summer between surgery and radiotherapy, I was still, you know, I was still working and it was so close literally two weeks before my exam, I was like, I'm not going to throw it all away for just this. I let my school know, who again were always really, really like thoughtful and kind and asked if there was anything I could do, they could do even. They offered me things like extra time in exams, which I chose not to take because I thought I wasn't really in a different position to anyone else you know. Then my exam boards were made aware of the situation so if I had to miss an exam which thankfully I didn't, they'd, they'd know and maybe take my, my predicted grade or take it into account that I missed the exam because I was somewhere else, but thankfully that didn't happen so. 

I kind of, I did my exams and then they turned out really well. My school was really proud, they, they always publish in the newspaper about the exams and they, they wrote a little paragraph about me saying that because I got five A stars and four As at the end of it, so they, they wrote this little thing in the paper saying you know, even with battling cancer she managed to get good marks. So I was, I was chuffed when that came in the paper I was quite proud. I was like, you know 'cos I, I did feel that I worked hard, it did keep me going 'cos I thought, you know, at the time I thought GCSEs were the be all and end all you know [laughs]. 
 

Gives advice on how to look after your scars.

What would be your advice to regarding scars, physical scars to young people?

Scars I think it, obviously it takes time. It's something you should embrace because, and be proud of, because it is part of who you are now. And it's, it shows how far you've come. I think it's very important to look after your scars when they're new obviously you should clean them lots with salt water. And have people keep an eye on them so they don't get infected. But also moisturising's brilliant, just simple E45 cream works wonders and also you can go to a health food shop or a chemist and say, 'Look I've got some scars what can you suggest?' I found a, a brilliant oil that I use on my scars that really reduced them I think.

Which oil?

It's called Bio Oil it's about '10 for a little bottle, can't even say it, '10 for a little bottle and it's, it's just some oil that you kind of massage in. You only need a little drop so the bottle lasts quite a while.

Where did you find that?

At a health food shop.

Ah, ok, and it's called Bio Oil?

Bio Oil, and that I found phenomenal. I mean I've been using it since New Year's when I remember to about twice a day just rubbing it in and you know there's a, I can see a big reduction in the visibility of it. But it's also a good routine to get into because if you're aware of your scars then your body, you can report changes instantly.

Stay positive and after hearing the diagnosis, talk about your feeling with family and friends and tell doctors how you are responding to your treatment.

For those who've just been diagnosed I think it's important to find out about what you've got but not too much in the way that the fact you don't want to go, start looking at things before you're ready to absorb information. I think it's important when you're first diagnosed to take some time out to talk it over with friends and family and people who are close to you, just purely about feelings. How you're feeling and your stance, even before you know what's available, just kind of how you think you're going to want to tackle the problem. I think that's kind of important, 'cos as soon as you're grounded and you've accepted that that's your diagnosis, you can then start looking for information on what you can do, and talking to your doctor's always a good one, or your nurse might be easier, they're more readily available. Or looking on like this website to find out more information about people who have had similar experiences. I mean if you talk to whoever the nurse present is, I don't know whether it's a CLIC nurse or just a cancer nurse I don't know, they usually have kind of, they can tell you about other patients that you maybe would like to talk to and about holidays as well. I've been put in contact about lots of, lots and lots of holidays and trips. Or you just kind of meet people and you can see people that have had horrific things, often more horrific than what you've been through and they're, you know they're still there and they're still laughing and they've still got friends, life, kids, whatever you know.

And those who are going through treatment I think, the most important thing is to be open. I think you've got to be very honest with yourself about how you're feeling. I think there's nothing wrong with, if you're not reacting very well to something, you have to accept that and make it aware, make doctors aware and, of how you are feeling and responding to treatment because there's no point fooling yourself or fooling someone else saying, 'This anti-sickness is working' if it's not. If it's not working tell them and they're more than happy to, to find something that does work so I think really be honest. Keep a track of things but don't get too obsessed with everything, you know. It's good to keep a record of, if it's relevant like blood count or weight, or, or maybe different medicines, to keep a list of medicines you've been prescribed and why. It's important to ask why, 'cos if a doctor gives you, say take such and such medicine, if you're not quite sure what it is just ask, that's what they're there for. If you say, 'I'm sorry what, what's that meant to be combating?' or 'How is that going to help me?' and then they can give it to you in, in simple kind of non-medicinal terms about, you know, 'Oh this is going to settle your stomach' or 'this is going to stop the pain', 'This is going to make you feel a bit better' this, you know, it's just.