Coping with cancer as a young person

Everyone will deal with the experience of having cancer, and having treatment for their cancer, in different ways. How people deal with it all will depend on many different factors including the stage at which the cancer was discovered, what kind of treatment they are having, whether they are being treated at home or in hospital. But it will also depend on their own personality, how at ease with themselves they feel, how they feel about their future prospects and many other things besides.

Here young people talk about the coping strategies that worked for them as individuals.

Many young people we interviewed talked about the importance of remaining positive through illness and treatment. For some it is about consciously facing up to the condition, confronting it, fighting it and maintaining hope. For others it meant not being frightened of the illness or its treatment, or not thinking about the possibility of dying. One young person said that being positive meant enjoying ‘their teens years and the here and now’ (Interview 06) and for another it was ‘to live the present and to plan no more than a week in advance’ (Interview 24). Some said that what was important to them was doing things to break the monotony of ‘the patient routine’, such as going out with friends or family, taking a stroll in the park or walking on the beach – all of which could help make them feel more positive.

Stephen believes people should be as positive as possible and enjoy life and he talks about some of the things he has done since his diagnosis.

Age at interview 19

Gender Male

Age at diagnosis 15

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You’ve obviously done a huge amount for other people and you say that keeps you going in some ways?

Yeah well one of my mottos is the best ways to help myself is to help others, so that’s how I’m spending my time now and as a result I’m pretty, pretty happy with things.

So would you, what sort of message would you pass onto other young people who’ve been given a diagnosis of cancer?

To young people, it’s just to keep on going, and just to be as positive as possible. But it’s important to recognise positivity isn’t being happy and smiley 24:7 cos that’s a bit clichéd and unrealistic. Positivity to me is about making real steps and changes to your life. How you’re going to approach something or what you’re going to actually do with your life and just start thinking about things a bit more, a bit more potently and coherently, so is worrying about X scan result actually going to achieve anything? Or would you be much more productive just totally forgetting about it and just enjoying those couple of weeks leading up to it doing I don’t know whatever you enjoy. Each to their own, but yes to me positivity is about just making actual changes to your life and make a difference. And yeah so just keep on going. Cancer isn’t great, but life can be so you’ve just got to concentrate on that bit, and just enjoy living.

Yeah so I, yeah I’ve had the bucket list which I’ve had a great time with, and I’ve done loads of fun things off the bucket list as well. And yeah I am quite happy, whether I tick another off or not, the main thing I’m concentrating on is the fund raising, so as I say the new target is a million, so I’m going to be pushing hard for that. As well I’ve been doing kind of motivational speaking to schools, to businesses, to health professionals, to all kinds of kind of settings to share my experiences with, with a view to helping and just got lots of exciting projects on at the moment. I’ve got a documentary out soon, I’ve recently released my own new website, Stephensstory.co.uk, recently released an e-book, hopefully I’m going to write a bigger book in the future and yeah just loads going on.

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Says that cancer is just a word and that you need to have the right attitude when having treatment.

Age at interview 18

Gender Male

Age at diagnosis 18

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And in terms of advice to others. Is there anything you would want to tell other young people who have been diagnosed with the same type of cancer you have?

Well, just, just don’t be put, don’t be scared by the word ultimately it is just a word and most cancers are treatable and you just need to go through that, that, that procedure. And, you know, you’ve just got to have a pragmatic approach to it.

And what about to young people who are about to start treatment, chemo in this case?

Chemo can be unpleasant but really it’s ultimately as unpleasant as you make it. Yes you can feel, you can feel queasy, your bladder can become extremely full during it but it’s just, but if you go in with the right attitude then you’ll probably, then you probably won’t suffer too, too badly. But if you go in with the wrong attitude then you will suffer with it a bit.

Can you explain a little bit again the difference between the right attitude and wrong attitude?

Well, the right attitude would be to go in accepting it for what it is, you know as a, as a treatment which is ultimately doing you good. And, and you know not, not exaggerating what it is likely, what it’s likely to be. You’re just attached to a, to a drip really and you know, you can, you can handle that. And the wrong attitude would be just to, just to go in just to just completely dread it and you know just to exaggerate what it is, what it is like in there and not, and if you go in with the right attitude then you’ll probably suffer less from the side-effects. But if you go in with the wrong attitude then you’ll create your own side-effects.

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It was also clear from what young people said that no one experiencing cancer can hope to feel positive all of the time, and that there are times when they inevitably felt tired, anxious, angry and depressed.

Some believed that having a positive outlook had helped them when coping with the unwanted side effects of their treatment and in their recovery (see also ‘Does everyone feel the same as I do?‘, ‘Relapses‘ and ‘Follow-up appointments‘). Another thing that had helped was if the health professionals had made sure that they fully understood their condition and its treatment because this helped the young person feel that they were taking control of their illness (Interviews 08, 16, 26, 28). For instance a man who had previously given up his treatment said that once he had reached a full understanding that there was no alternative to what he was having, this helped him to cope with going through the treatment protocol. Still others found that keeping themselves well occupied helped to prevent them feeling so ill when they were undergoing their treatment (Interview 10).

This time he is determined not to give up his treatment and is prepared to cope with chemotherapy…

Age at interview 23

Gender Male

Age at diagnosis 22

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And your treatment will go, will last for another eight months or nine months?

Well this is my third chemo. After this I’m out for two, no three weeks. Then after that it will be a transplant from one of my siblings. And then I’ll be in the hospital for six weeks. Once my counts come back up the doctors will release me. But then on a regular basis I’ll be coming into the hospital every two weeks for a check-up. For them to check on my blood and then I’ll slowly you know, you’ll change it to three weeks and then four weeks then a month, I mean a month.

Would it, have they discussed with you the possibility that the treatment might be length, lengthy, sort of longer?

Yeah. They said every person is different. So there could be other problems as well as the, because very complicated when you’re having a transplant. But they go after this course of chemo you have to go to the [hospital] and speak to the people who will be carrying it out and they’ll tell you more information up there. So I haven’t quite got the full information. Maybe if there are things that I don’t know yet but I’ll get that information once this chemo is over.

But in a way sort of you are more willing now to go through with it?

Yeah. I think I’ve been through enough, I’ve done enough damage [laugh]. So it’s time for me to face my problem head on.

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What is also of great importance is being able to maintain some sort of ‘normal lifestyle’. For instance, those who had their treatment as out-patients were, depending on their health, able to maintain aspects of their normal routine by going to school and thus were able to keep in touch with friends. For them, going to school or university was important because it provided a break from being a patient, provided regular contact with their mates, thus reducing feelings of isolation and exclusion or, as some said, of ‘missing out’.

Going to school provided a ‘break’ from his illness and treatment.

Age at interview 19

Gender Male

Age at diagnosis 14

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I think my mother in particular was very, very upset for the first few months because she took time off work to look after me. And the days were really long and we were here on our own and she would get upset and I’d get upset. But as treatment went along and I went back to school and they went back to work and we got normality going again it got easier. And right from diagnosis every time I went to clinic thered be more good news and thered always be some hope to cling on to. So certainly it, it did get back to normal quite quickly.

When I first started having chemo I was quite tired the very first time I was having the treatment but that did get better and it got to the point where I was going to school every day after treatment. I didn’t miss any school. Once I, the day after I’d chemo I felt well enough to go. And school became a really, really important part of it all if not for studying just to go and have a break with friends and for the social things. And I, and there wasn’t a teacher who would walk past from me wouldn’t stop and ask how things were and it was really, really great to have that support. So I was really pleased I could keep going really.

So you kept going throughout your treatment?

I kept going to school all the way through my treatment as much as I could. I started off by doing half days just a few hours to get me out of the house. And I suddenly realised well there was no point in this so I went for whole days and I was absolutely fine and really enjoyed it. And then during the summer holiday when I was still having treatment it got a bit awkward because I didn’t have that break and I really missed school. And of course we couldn’t really go very far on holiday [laugh] but I did go out cycling and things and I was absolutely fine.

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If treatment had to be provided all or most of the time as an in-patient then this was provided either in teenage wards or in adult ones. Those who were treated in teenage wards said that being with people their own age greatly helped when it came to them coping with their cancer and its treatment. It is obvious that young people, when in hospital, do not necessarily talk about cancer all the time and certainly do not sit around feeling sorry for themselves, but that, like any other group of young people they talked to each other about all aspects of their lives and about their plans for when they get to leave hospital. Using humour also appeared a great way of staying positive about things.

He and other young people treated in a teenage cancer ward used humour to help one another go…

Age at interview 23

Gender Male

Age at diagnosis 23

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Just look positive, feel positive and what have you. ‘Cos at the end of the day, the best medicine is laughter and if you can shrug it off and just think, well, that, theres worse things that can happen to me and as I say, you, you sort of tend to take the treatment a lot better.

Ok, ok so you have used humour?

Yeah, as I say my mates that I was with, it’s like wed, tended to all come off the treatment at the same time so it’s kind of lucky.

Ok, so you joke a lot when you were in hospital?

Yeah

Tell me, what did you joke about? [laughing]

Could I have extra sickness with the chemo ‘cos I’m not getting enough of it yet? Just weird stuff, it’s like I wore a t-shirt ‘What sets me pumping?’ and it’s the actual thing that pumps the chemo into you, just some sad sense of humor which just gets it going.

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A problem was that young people who were treated in an adult hospital ward felt more isolated and needed to use other techniques like ‘relaxation and visualisation’ when trying to stay positive.

Didn’t have much chnace to meet other young people during his treatment but was taught to relax…

Age at interview 24

Gender Male

Age at diagnosis 16

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I used to think that like when I was on my own and there was no, nobody, because its very boring having chemotherapy its very boring and I used to think that, that I, my, me, my body was sort of like an island and I kind of sort of, a, a big sort of a an island, a desert island sort of with palm trees and luscious plants and like sandy beaches. And I used to think that the cancer cells were like sort of aliens from an alien film or something and they were just used to come round munching all the, all the, the, the vegetation and killing all the birds and chopping down all the trees and sort of making everything awful.

And I use to dream that, that the chemotherapy was like a big sort of bomb and I, every, every time I had a sort of chemotherapy dose that this bomb would go off and just blow up the whole island and rip the vegetation apart and like, like damage all the, it would damage all the trees and cause big storms but it would also kill off all the cancer cells, all these aliens.

So I thought, and then as a, that was a sort of being neutropenic and then when I started to get better I used to sort of think of like the sort of trees sort of slowly growing back, the leaves, the sort of storms going away and then the, the sort of birds starting to sort of sing and, and like the greenery sort of coming back. And that’s how I used to think that that’s how my therapy was going along, that’s how I sort of used to try and visualise how things were. And I think that, that helped me quite a lot actually in quite, in a strange way because I used to think that, that is how, because I was getting better after my therapy, after my neutropenia so that it was, you know I could sort of see it. And in some ways that, I could sort of see myself progressing, if that makes any sense?

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Talking with friends, parents and brothers and sisters was a very important source of support that helped. There were also instances where they developed a closer relationship with their mothers and were able to talk with them more openly about their fears and anxieties.

Her mother helped her to see her situation as a fight that she was going to win.

Age at interview 24

Gender Female

Age at diagnosis 17

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I remember waking up one night (I think it was just before my last course of chemo started) and thinking ‘If this doesn’t work, I don’t know if I could do it again’ and being really worries that I simply didn’t have the strength to do it again. That was a really low time.

But Mum said that I was going to be okay and get through it and to remember that the doctors had said it was going to be fine. I realised that I had to believe I was going to be okay and that if I did have to have more treatment in the future, deal with it then.

So you were reassured by the doctors?

Yes. Although, I think more by Mum really. The doctors always talked in percentages, which was quite scary really because if they said 90% will be fine, I worried about the other 10%. But Mum managed to frame things in a much more positive light and kept saying that I was a fighter and was going to be okay. And I believed her and just went for it.

Did you see it as a fight?

A bit, yes. There was this thing and it was me against it and I was jolly well going to win!

Because psychology is quite a powerful weapon?

Yes. I was aware just from television programmes and articles and things that people say how important your mental attitude is. I think I have always been quite determined and quite stubborn and was determined that I was going to win.

(The text has been altered in accordance with the wishes of Interview 13.)

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But they did not always want to burden their parents with their innermost feelings and found it easier to talk to somewhat who was less emotionally involved. It was obvious that during treatment many young people tried to put on a ‘brave face’ or maintain an upbeat mood for the sake of their family and friends. Again, a reoccurring theme was that many young people said that they did not want others to feel sorry for them.

Found that during treatment he was able to talk more openly about his fears to a shiatsu…

Age at interview 25

Gender Male

Age at diagnosis 22

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It also helped at that time that I had my godmother had introduced me to kind of homeopathic remedies, not anything specifically, just kind of, well Shiatsu is specific, none, none of the kind of you know herbal teas or anything like that. It was just kind of Shiatsu massage which is like a form of acupuncture in massage and through that I’d kind of met this guy who, who was the practitioner and he was really useful. Because, because he was a step away from everybody else I felt I could talk to him, you know, about all these kind of fears that I had, about all these issues that I had and that was, that was probably really, really useful because everybody else I felt was a bit too close. I didn’t want to admit my, you know concerns and frailties. And I, I did have them at the time I, I just didn’t want to worry other people with them. I didn’t want to say to my parents, ‘Oh look, I’m really worried about this. Because I knew that would then worry them. I wanted to show them that I was fine and, you know, just put a brave face on it basically. So the fact that I had this, this person outside of those sort of circles of immediate friends and family was really, really useful.

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‘Support groups’ and ‘participation’ also played an important part in helping people to cope. They felt that it was very beneficial to meet others who could ‘understand how you really feel’. Ways of participating included activity camps, going to a meeting, chatting with others through the Internet, taking part in organised group activities such as relaxation therapies, or become a volunteer helping other young people going through the same experience. Initially, some were reluctant to join a support group because they thought it might be depressing. Others, who participated in a support group, came to realise that there was usually someone there who was worse off than them, causing them to appreciate the more positive aspects of their situation.

Started to go to a local support group that included a youth club and he was pleasantly surprised…

Age at interview 17

Gender Male

Age at diagnosis 14

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And when, at what stage of your illness you became involved with Cancer Support Group here?

Just after that, just after I finished my chemo. Towards the end and after, mainly. Before when I was a bit hesitant to sort of go and do it. I thought everyones going to be really ill there and stuff, and end up feeling worse, because everybody, like, like really ill, I think. I thought that maybe it won’t be so good. And when I did go after I’d gone to Ireland, I went to that as well, to the Youth Group, and it was, it was really good. I had, like, a holiday all there and stuff, table tennis and things, and it was really good, had a play station, so I could chill out and stuff, listen to music. Talk to people my own age who are suffering the same thing as me. It was really helpful.

So you, you’re still in touch with them? You still go there?

Yeah. Yeah. Well, the Youth Club shut down a few months ago, a few months ago now, because they ran out of funding, so’

The youth club?

Yeah, which was on Tuesday nights. But just a few weeks ago, a new art club started up there on Tuesday nights, which is like a pilot thing going on for a few weeks. If that goes well, I hope they can get funding, so I can get back into that as well. But I still go Tai Chi down there.

How important is it to keep this Club going?

I think it’s very important because, I didn’t, I didn’t, I didn’t experience it while I had the cancer, I went there afterwards, after I’d finished my treatment. If I went there earlier, I would have had well, more positive support from everyone as well, people who had been through the same thing, or who know people who have been through the same thing as me. And you can all sort of, it’s better, theres power in numbers, and if you all think the same, like think positive, it will help each other, won’t it. I think that if people went to it now, the people, if they’re still around now, the people who were in there, would really benefit from it, because it would support you in a lot of ways – not just by talking and stuff or playing games, but knowing that theres people, that you’re not the only in there that has cancer. People around your age who still have it, and still manage to cope with their lives and stuff, give you more hope, in a way. So I thought that’s really important. But now it’s not there, it’s kind of a shame, but, hopefully, it should come back soon.

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

Age at interview 26

Gender Female

Age at diagnosis 17

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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 weve 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.

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Was lucky to have the support of a friend of his own age who also had testicular cancer….

Age at interview 25

Gender Male

Age at diagnosis 24

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My specialist used to run one at the hospital he used to work at for guys with testicular cancer and he said it was packed every week but then he moved hospitals and hasn’t carried it on. I know theres a few sort of Internet groups I think mainly based in America especially with Lance Armstrong Foundation and things. I haven’t come across anything in this country as yet or specifically in London though.

So you haven’t participated in any support groups?

No.

Ok. Would you like to contact a support group or?

Maybe. I think it probably could have been helpful while I was having the treatment. Luckily I knew of this friend who’d been through the same thing and so I had him to explain to me the chemo, the side-effects, physically, psychologically how it affected him so I could prepare sort of what would happen to me. If I didn’t have that then yes I think a support group would have been helpful.

Ok so you had someone close to you who was helpful?

[Mmm] Yeah I was very lucky in that respect.

I was lucky. I had this friend who explained to me what he went through and to me that was very helpful. He was my age as well, 24 when he was diagnosed and so I think we had the same, or common sort of fears and anxieties about the treatment and the operation and things. So that definitely helped. If I didn’t have this friend who could help me then I think perhaps a support group might have helped. But then theres great information on things like Cancerbackup’s website which is very informative anyway.

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There are other coping strategies that helped young people channel or express their feelings. Some developed these strategies themselves whilst other strategies were suggested by their teachers, psychologists or their nurses. These include such activities as listening to music, writing poetry, keeping a diary or photograph album, drawing, practising gentle forms of exercise like walking or even Tai Chi. These became very important during illness and treatment because they provided both enjoyment and also helped to deal with negative feelings.

Explains two pieces of art work she did: the first is about the meaning of her scars and the…

Age at interview 17

Gender Female

Age at diagnosis 14

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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, theres 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.

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Explains how a psychologist encouraged him to express in drawings the feelings that he found…

Age at interview 16

Gender Male

Age at diagnosis 13

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I think it was the constant, you know, I had to have this then this, then this, then this, then this, then this. I didn’t have a break. And it was just one thing after another was piling up on me and then they were going to do something else and I was like, ‘Look this is too much. The side effects were really affecting me so I was feeling ill and having these things piled one on top of another, the side effects were slowly getting worse. And I was just my, I can’t, I can’t deal with this any more.

And at the time I, I didn’t actually know how to express myself. So they were saying ‘How do you feel?’ and I didn’t know how to tell them, you know, it was, it was very strange. I couldn’t put it into words. So I was just like I feel terrible and they were like, ‘Well what exactly?’ And I was like, ‘I don’t know. I can’t express it. So my, I, they, they asked a psychologist to talk to me. And she said, ‘What are you best at?’ You know, what, what, ‘What do you really feel strongly about?’ And I was thinking and I thought, ‘Well I’m, I love doing art and I’m quite good at art. And she was like, ‘Well why don’t you draw how you feel? Express it through pictures. So I was like, ‘Oh, ok. So I did. And in fact it really helped because I showed the doctors and they were like, ‘Oh, this is, this is very interesting. And it kind of gave me a release so I could kind of put my thoughts down on paper in a visual form so I could kind of off load some of the pressure that was on my head and on me out which, which was very helpful.

Through art?

Yeah, through art. So I, I’ve basically I’ve drawn what I think leukaemia looks like and all of the things to do with that and all of the medicine. What they would look like and how they interact with each other and how they, how the medicine beats the leukaemia and stuff.

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Long-term complications such as memory loss, visual problems and balance problems (all particularly common in young people with brain tumours) needed additional coping strategies.

Describes strategies he adopted to overcome his memory problems caused by his brain tumour.

Age at interview 20

Gender Male

Age at diagnosis 17

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Has your memory improved?

Son’Yeah, it has because I’ve, because I learned all these different things like I had to write a diary every day about what I’d, what I’m going to do and about what I’ve done and like all the, all the, just like what I’m going to do, what I’ve done and what I’m going to do. And that used to be a big help to me because then I used to look at it, oh I’ve got to do this next and oh, I’ve got to do that. I’ll ask Sir this question, yeah and, and then [sigh] I don’t know when, when I finally felt as though my memory was improving.

Mother’Well, it gradually improved as the months went on because there was no more radiotherapy and his brain sort of settled down and gradually it got rid of the debris [cough] from the tumour. So as that happened, his brain, you know, settled [cough]. Also, hes been taught to use different strategies so it’s a combination of improvement’

Who has taught him?

Son’Well, my ‘

Mother’At, at the rehab.

Son’OT.

Okay.

Mother’Yes, the occupational therapist.

Son’The occupational therapy used to teach me to, if I forget something, go back on what you’re doing, like if you’re walking along the street or something, go back to where you were and then start again. Think about it and it usually comes back into my mind.

Mother’And we think up our own strategies.

Son’Yes.

Mother’Because like there, there are times, weve all done it, when you go upstairs and think, well what did I come up for? Well, how do I work that one out? I stop and think, well what was I doing before I came upstairs? So I’ve taught [son] that.

Son’And like, I’ve got a few things where I keep my wallet and phone, I always keep it in the front part of my bag so then I can easily, it’s easily accessible. I always keep my phone on the charger, which is there. So then I know where they are and I know, know where they are and what they can do or I’ll have it on my, put it on my bed and,

Mother’Well that was after several times he lost his phone or his wallet [laughing]. And it caused us quite a big panic, you know, the whole family was looking for things [cough] and then we said, ‘well, how can we prevent it?’ So you, you sort of work out strategies learning from problems that have happened. So it’s an on-going process, really.

Son’Like every night, I used to put in on the charger that was on that table and I just, I did, I do get a bit frustrated sometimes, I thought, how, how I was. I can remember like bits of it about how I was before and then how, to how I am now. I think, this is really bad, isn’t it? Because you, you can imagine like where I used to just put my phone there and get on with life and now I have to put it there so I can remember it. But it’s just a bit frustrating but I just think it’s part of my time to be a bit like that, if you know what I mean.

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Managing physical problems such as scars was also a big issue (see ‘Body image during and after cancer’).

Gives advice on how to look after your scars.

Age at interview 17

Gender Female

Age at diagnosis 14

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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 theres 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.

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Stephen created his own website called Stephen’s Story to talk about his cancer experiences and spread his motivation and positivity for living life to the full.

Stephen created his own website about his cancer journey. He made a bucket list of all the things he would like to do and one of which was to raise a million pounds for the Teenage Cancer Trust.

Age at interview 19

Gender Male

Age at diagnosis 15

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Had you joined the Teenage Cancer Trust at that point?

No I haven’t really joined them if that makes sense. I’m an unofficial kind of affiliate, I’m just a fund raiser. Probably should mention as well when I was, when I was diagnosed in my pelvis, when it was said, when they were discussing amputation but then they said Oh it’s in the pelvis, after and they said it was incurable, unfortunately so yeah and then they said this Christmas period and then and I started back studies in January and then I was obviously thinking diagnosed incurable, what am I studying for? I wanted to study medicine, I was at, I’d just had interviews at Cambridge and Leicester but medicines a five, six year course. If I’m incurable it’s not going to be the best use of my time. So that’s when, on the 13th January 2013 I made a Facebook page called Stephen’s Story, which included a bucket list of things I was going to do. It included fund raising and it included all kinds of weird and wonderful things that have kept me busy since.

So you reacted to this awful news by being very positive and making a list of what, all the things that you’d like to do.

Yeah. As I say yeah since starting Stephen’s Story I’ve ticked off 35 of these bucket list items, so that includes crowd surfing in a rubber dingy, it includes drumming in front of a huge crowd, I did that in front of ninety thousand people at Wembley, included doing some public speaking, I did that at Downing Street and the O2 arena in front of 4,000 people. It includes getting a tattoo, of which I’ve got two. It includes skydiving. It includes hugging an animal bigger than me. I hugged an elephant.

An elephant?

Yeah. Awesome. And it just included all these weird and wonderful things that have just kept me busy throughout the year. I mean as well number one on the list was to raise £10,000 for Teenage Cancer Trust, and in just over a year now I’ve raised £570,000 for em.

Amazing. Half a million pounds.

Yeah just like that so my new target is now a million. So fingers crossed we get there.

Yeah so I, yeah I’ve had the bucket list which I’ve had a great time with, and I’ve done loads of fun things off the bucket list as well. And yeah I am quite happy, whether I tick another off or not, the main thing I’m concentrating on is the fund raising, so as I say the new target is a million, so I’m going to be pushing hard for that. As well I’ve been doing kind of motivational speaking to schools, to businesses, to health professionals, to all kinds of kind of settings to share my experiences with, with a view to helping and just got lots of exciting projects on at the moment. I’ve got a documentary out soon, I’ve recently released my own new website, Stephensstory.co.uk, recently released an e-book, hopefully I’m going to write a bigger book in the future and yeah just loads going on.

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Stephen wrote about his cancer journey to spread as much positivity as possible. He found the response to his website humbling and helpful.

Age at interview 19

Gender Male

Age at diagnosis 15

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How much support have you gained from outside, through the websites, through Facebook or Twitter or your blog?

Yeah they’re, since starting Stephen’s Story the support I’ve had has just been absolutely huge, it’s been from inter, it’s been international, for example I’ve had messages from other countries just saying, Wow, really respect what you’re doing, blah blah, wish you all the best. Or people sharing their own stories of someone who’s had cancer or anyone or etcetera and it’s just been as I say really helpful, cos it’s just really humbling you know that, that people do actually care but without something like Stephen’s Story all around me and it’s huge reach I wouldn’t be able to notice that. But people do genuinely care and yeah want to help out.

Oh that’s good, they can see, so you look at, do you write something most days?

Yeah, no I try and update as much as I can, so theres normally an update or two a day. Whether it’s about what I’ve done in the day, whether it’s about an upcoming event, whether it’s just a motivational just thought, or whether it’s just a silly anecdote to try and put as much out there as I can and it’s all just as positive as can be, and again it’s a, the page is just to spread as much positivity as possible.

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Body image during and after cancer

For young people in the UK, physical appearance can be very important. The 'ideal' body as shown in the media can be unrealistic and difficult...