What was going through your mind?

Going through my mind was really like two sides of the thing. One was thinking back of other people that have had it and what happened to them. So I was like, I was considering, one of my favourite musicians Bob Marley with his having two brain tumours he died from it and then my Godmother, that I mentioned earlier, having breast cancer, surviving it, and weighing up how many, like trying to weigh up how many people I knew who’d had, had cancer and died and survived and trying to compare you know what I mean to see what my odds were. And then there was the side where you think crap am I going to be able to get through it, am I going to be one of these people on the side which got through it and achieved, I’d say the ultimate goal of beating cancer or am I just going to lay down and let it just attack me you know because I knew there was no possible way of beating it but the way I was thinking at the time was am I going to let it beat me, you know?

So could it be that the one big emotion was this concern about ‘am I going to make it’?

Yeah it was.

I’m going to beat it?

Well the one, well there two kind of there was the one with am I actually going to a make it and then there was the second one with the fear of if I do it and I don’t make it how disappointing is it going to be? Or the fear whether I don’t do it and I’m just going to die anyway. So it was, the question on my mind was do I take the opportunity to try or do I just give up? That was the hardest choice to make.

So what was your approach to it?

My approach to it was really I thought in myself I thought I can’t do it and I thought but it’s not fair because I’m not the only person in my life, I know I’m the main person really in my head but there are other people, there was my family and my friends. So I asked everyone that I knew, all my friends and all my family, all the per, all like personal friends and that you know the ones which meant things, I asked them whether they think I should go through the treatment or what and whether I should carry on or what. And the overall result was everyone else said you’ve got to go for it you know, theres a higher chance of you surviving if you have all this against just me who was thinking I just can’t do it, theres no possible chance, I’m only fifteen, I’m no one special, I can’t do it on my own you know so.

How long did the chemotherapy treatment?

The chemotherapy to be honest seemed like forever but I think it was about may be eight or ten months. So you know it was a long haul but you know.

So how were your moods at that time, emotionally how were you?

They went from, ranged from right down towards you know wanting to commit suicide all the way up to you know I’m on top of the world because it’s the end of the week and I’ve finished radiotherapy or I’ve finished my chemo for the, for the week, you know what I mean? Both ways because many times I’ve been, well not stood but kind of got in my wheelchair and wheel chaired to the window of my, at like early hours of the morning in, in the hospital and thought I could end this really easily and just [expel breath] jump out the window you know. And then thought again unfair. And then like with, in my circumstances a big help was listening to music which was kind of keep me in the middle with my emotions you know. Obviously from time to time it went phew left and right but music kind of kept me focused and central, just listening to music. Mainly I listened to like Bob Marley and feel good music really, I call it feel good music anyway. And after you know doing that a few times that really, I thought like this is working, this I keeping me kind of looking forward you know trying to think right I’ve made a step forward, let’s not look behind and see what I’ve gone past until I get to the end with this, with the music. So the music was a big factor in my, me getting through the treatment.

Have you ever felt angry?

The worst I felt was that day I had my Hickman Line put in, and I couldn’t eat and stuff. That’s the worst I ever felt, because I was so tired and really worn out that day. But, other than that, I never felt, ‘Why me?’ or anything. I always sort of looked up at it and thought, I counted everyday and said, ‘Okay, two months left’ or whatever, and I felt better. I knew there was an end, so it wasn’t that bad. If it was, like, a really long treatment, and I didn’t know when it will end and stuff, I’d probably feel worse. Because I knew the deadline of six months, I was rushing to finish it, so I was more, I was looking more to the end of it than to what was going on at the time. So I made sure that everything went well until then, that, so it wouldn’t be any longer than six months. Because I mean, because, if I ever lost hope, and didn’t, didn’t go to my treatment or something, or didn’t have my chemotherapy on time, or I didn’t eat properly, I didn’t recover well enough in time, then my next one would be worse, and would set me back even longer. So I knew that my, my own sort of state of mind was really important, so I tried to keep it always, always good. Yeah. And, and you get, like, an allowance as well. You get, like, ‘150 a month, from having cancer, so I could always keep myself happy as well, by buying stuff and things. And, it was always, well, it gets, for me, like, out of it, you don’t notice how bad it is. It’s all about balancing it out, in a way, and, I never really thought, ‘Why me?’

This attitude of keeping yourself positive?

Yeah.

I mean. Is that part of your personality, or did you develop it while?

I think I developed it mostly from having cancer, because I’ve always been sort of, like, content-ish, sort of thing, but then having cancer gave me, like, a new look, a new look in life. I realise it’s more important than just, than a, than a few days being unwell for a year, has left me well now, rather than, if I’d taken that year out, thinking, ‘I don’t want to have my treatment’, and then dying, like, a year after, from having, from cancer not being cured, I could have, I’d rather have it done now rather than later, really. I will suffer now than later, when I’m older and weak, and I’ve got better stuff to do. I mean, I was just cool and things.

You are young and you can’

Yeah, I think I can grow stronger afterwards. I think the whole process of being younger helps you a lot as well. It’s like an advantage.

And how long it took for you to recover from the operation?

Properly I would say about three months, because I obviously was in a lot of discomfort, I had pain, you know, pain under my rib cage because apparently they had to crank open my ribs, and you know, from the, from the scar line itself so probably three months at least until I was able, you know, to, to get about properly like I was before. Definitely.

And you do, you do feel quite bitter sometimes that it’s sort of slowed you down. I wasn’t able to finish university, where I’d spent three years working very hard, I’d like to have finished it, you know, properly and I’d like to be getting on with my life, I’d like to be doing what I want to do and what I’ve trained to do. And I’m sort of, I can’t do exactly what I want to do yet and I sort of, sort of in limbo at the moment, especially till the, the visits to the hospital are lengthened, I’m not able to do what I’d perhaps like to do, definitely.

I think it has helped me recover quicker, you have to stay positive because you can’t, theres no point in being so down on yourself, because it, it just makes you worse. Of course you stress about things, but you need to be so, you know, you need to try and talk yourself around in to thinking not too down on yourself, and you know, not making worse of the situation than it already is if you know what I mean. You’re not helping yourself, you’re not helping anybody around you, and you’re not helping yourself physically, mentally, you know, anything, if you’re thinking down on yourself all the time. You’ve got to try and think positive and think ‘Well yeah maybe that’s the case, but it could happen that you know,’ it’s not as bad as it seems, or you know, ‘I am having tests, maybe there is something,’ you know that you’re stressing about, but there might be a good side to something. And you’ve got to constantly try and you know get out of the house and meet up with friends and try and make some time for yourself instead of being so in, in, you know enthralled with your own disease or your own diagnosis where you’ve, even if it’s sort of for half an hour, it takes your mind off it, so you get some release from being, thinking about your illness all the time; and it helps, it does, you’ve got, you’ve got to stay positive. Do things you enjoy or try something new, try and find people you can talk to.

I do remember thinking that its just, its pointless being negative about it you know because that doesn’t served any purpose at all, it doesn’t do anything. And you know remaining positive helps someone in that situation to like remain as strong as they can, so you know like remaining positive was probably what I was telling myself mostly to do. Except just, it was quite hard when I had mouth ulcers and stuff because I remember getting so frustrated that I ended up throwing syringes at nurses and things like. So [chuckles]. Huh. But yeah, no definitely you know I was telling myself to remain positive.

Okay how did the nurses react when you were throwing syringes at them?

Oh well that, that was only once actually but that was when theres a substance called Laculose which is sort of meant to help the digestive system and someone was trying to force that down, one of the nurses was trying to force that down my neck when I had the mouth ulcers. And I just remember trying to swallow a little bit and she kept trying to sort of say ‘No, no go on, go on have some, have some more, and I’m like ‘NO, and I remember throwing the syringe at the wall I think yeah sort of trying to hit her but sort of missing. But no that was a one off, that was one time when I got particularly frustrated with everybody, that wasn’t really something that happened a lot [laughs].

So you were, you felt angry at that time?

Hmm, yeah very angry, angry at the world.

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.

And this attitude of saying, they are wrong, when did it begin to change?

It would probably have been after about four or five days I started to sort of realise that they hadn’t got it wrong, yeah, and then it started to sink in how serious it really was.

And how did you feel at that time?

A bit frightened, but it was strange, I felt that instead of, well not instead of but normally sort of Mum would be, because Mum stayed with me in the hospital, normally Mum would have supported me, but because Mum had taken it worse than I had and she was really quite shook up I felt I was supporting her; which allowed me to sort of see things differently. It allowed me to, sort of to think of the positives and to try and reassure Mum, which reassured me, which, which helped.

Fed up. I felt fed up quite often with the, with the lumbar punctures, just sort of, it had, your body would know when, when they’d dropped to every three months your body would know when you were coming up to one because you’d start dreaming a week before about having lumbar punctures and going into hospitals and just things like that. And you just, it’s weird, but you really do feel sort of ‘Why can’t it just, why can’t the three years be up now,’ you know, ‘why can’t I just,’ and sort of you feel half way between being normal and being completely ill, you’re sort of, you’re half normal and sort of you feel well enough to do some things but not everything that you want to do.

Did you ever thought or wonder at ‘I won’t make it?’ Did you?

Never. I never, I never considered it, I just, I mean this is what, that’s the sort of thing that I now hear; when I think back what I would have thought if that thought entered my head, I would have just said the same thing to myself that I then say to Mum if she mentioned it, and I’d just say, ‘Not going to happen, it’s just not going to happen, don’t consider it.

Now I would like to ask you about your feelings regarding your experience with leukaemia, Again I mean I think that other teenagers facing a similar situation may appreciate to know how other young persons have felt. Have you ever wondered, why me?

Yeah.

When was that?

When I first got diagnosed, why couldn’t it have happened to somebody else and, mmm.

Ok.

I don’t know why it happened and everything.

Have you ever pretended it isn’t happening?

No, I just, I just got on with my life, I didn’t let it hold me back from anything.

Have you ever felt angry?

No.

Or sad?

Sad aye. Used to cry in bed.

You felt depressed?

Yeah.

When was that?

One day I came back from the hospital, and it’s just the same treatment and home again. I just went to bed, then I woke up and I was arguing with my dad and, just ‘cos I was crabby and I wanted to take the bottle of morphine, I was drinking it from the bottle, my dad had to take it away.

I just says it’ll go away now ok, and I was just drinking it wanting it to go away. But, it was stupid.

I said I’ll get better, to myself. And just enjoy like, enjoy time the now just in case I die.

‘Cos I was, all my teen life aye? And I thought I’d missed out on that, I says, ‘I’m not missing it?’ So I just get on with it.

But have you felt that you have lost part of your teenage years?

Yeah, ‘cos like they’d go to the pictures and I’d be too ill to go. To have a party and I wouldn’t be able to go in case of infections and missed out.

So you were, you were restricted in what you could and couldn’t do?

Yeah.

So you couldn’t go to places where there were a lot of people in case you caught an infection?

Yeah.

Ok, what else couldn’t you do?

Go swimming as well ‘cos I had a Hickman line in and you weren’t allow to get wet, would have been able to get infections and.

So for two years while your treatment lasted that you had to stay at home or in hospital?

Yeah.

I still think that several years have been stolen because I couldn’t do what teenagers do, not safely anyway. You know, I couldn’t go out with my friends and mess around because it makes your bones much weaker and makes you much weaker. So if you fell off a wall or you know tripped over normally you could just like laugh at it and bounce back whereas in this case you might fracture a, a, you know a wrist. You might do any kind of damage to yourself so I couldn’t do that. I couldn’t do anything really. So I was upset by that. And I was, I was just completely lost. I didn’t know what to do at the time. Whereas now I’ve realised that life isn’t fair [laugh] which you kind of have to realise. But I’ve also realised that you just have to get on with things and you have to do what you can do, not what you want to do. And sometimes you just have to accept what’s given to you rather than what you want. So but it’s very difficult.

Do you feel anxious sometimes?

Yeah, I think I, I feel worried and anxious about whether I’m going to get an infection. Whether I’m going to break something. Whether something’s going to happen to me. I get very anxious and very nervous in that way. And I’m always looking round, you know always looking over my shoulder and stuff to make sure that nothing happens. So you’re always on edge until you come off treatment which isn’t an extremely nice feeling, but I’ve got to be careful.

But how have you coped with those sort of feelings of anxiety?

Well, [sigh] I mean the antidepressants have helped. They’ve made me much happier and made me feel better but talking to your doctor, your consultant, talking to nurses, if you see a psychologist or psychiatrist talking to them helps. And basically just think to yourself what, whatever happens will happen. You can’t stop it so don’t worry about it. Just let it, just let things happen. And it’s very difficult to think like that when you first start but it gets easier over the time. And now I’m, now I think well if it’s going to happen, it’s going to happen unfortunately you’ve just got to let it go. So.

Do you see a psychologist?

Yeah. I see, I see a psychiatrist, my psychologist is away at the moment so I can’t see her but my psychiatrist I see which is helpful.

How often do you see him?

I used to see him every six months, my psychiatrist whereas now I am going to see him every month or two months because I had a very bad patch a few weeks ago where I was extremely depressed. And I just felt absolutely terrible so talked to him and it did help. And he pointed out one or two things which you wouldn’t think of unless someone actually pointed it out to you. So that helped. So it’s very helpful if you can see one, to see one. So.

Overall how do you feel now?

Overall I feel better than I, than I did then but it’s, it’s really strange. When you start to get to the end of treatment you’ll start to feel very anxious and you can’t really understand why but then you realise that it’s because you’ve had such a structured life. You’ve had to do this, then you’ve had to do that and it’s kind of been a security blanket. And now that’s gone or it’s going and you will have to make decisions for yourself. And if you get ill you won’t have the hospital or at least the hospital won’t be as, you know, as close as it was when you were on treatment. So you start to get a bit worried because you’re having to go out into the open, in, into the wild world which is a bit, bit scary but at thesame time you’re really happy because you don’t have to have chemo anymore. And you don’t have to worry about constant infections and having to go into hospital and having blood taken and things like that. So there are ups and downs of, of it. But anyone or at least in my experience if you have a form of cancer when you’re in teenage years you mature a lot. You, you kind of take responsibility for yourself because when, when I was first going through treatment I was a typical teenager. I thought I was invincible. Nothing can hurt me and, you know, I’m, I’m on top of the world and I’m going to have fun. I’m going to mess around and stuff like that.

When did you start taking anti-depressants?

I think it was [sighs] just at the beginning, for, no it must be have been just before I started my second round of chemo I think. Yeah.

Do you remember why?

Because I was just feeling so down, so low, I’d lost my shoulder blade, I couldn’t lift my arm up, and I was just, I just couldn’t see any light at the end of the tunnel, I think it was after they told me that I was having another eight rounds of chemo and I just thought, ‘I can’t do this any more, I really can’t, I can’t go through any more of this.

So you felt like giving up at that time?

I did yeah, there was a few times, but my Mum said that I can’t give up and I’ve come this far, I’ve got over the worst of it and I can’t give up and, [inhales] so I didn’t I carried on. But yeah I mean I was quite glad after, ’cause I thought, ‘Oh yeah this is looking up, the chemo’s not so bad. And then I had the reaction and then I just went down again and I was just, I would just cry most days and say, ‘I can’t believe this is happening. And I just, I didn’t wanna do anything, I, it came to the point where I didn’t wanna see anybody.

And I had a, I’ve got a younger sister and, she was scared to hug me and because I was in so much pain all the time and then slowly I started getting movement back and I had to start learning to walk again with the help of my physio, he was really, really good, so I’ve started to learn to walk again slowly and then things started looking up.

Were there other episodes of Depression or?

Only when I finished all my treatment because when I was going through it I don’t think it really hit me what was happening to me and what I’d been through and how close I’d come to not making it, and so it was probably about six months after I finished all my treatment I was starting to get better that I went through a stage where I just, I couldn’t handle everything and, I didn’t know what to think, I didn’t know what to do and I just found everything really hard because the whole time I was ill I’d been looked after and I’d been under constant supervision and then suddenly I finish and I’m sort of let out into sort of world on my own and that was really scary ’cause I had to defend myself and, I had to get on with my life and that was, that was a scary thought because I haven’t really, when I’s going through it I didn’t actually think I’d get to that stage so I wasn’t sure what I’ve, what to do or anything, so that was really, really scary and I think that’s probably why I got so depressed and but I came through that.

In a way you had to become your own person once more?

Yeah.

But at the same time you had, had all this experience that it was quite hard?

It was, it was difficult ’cause I just felt like I was never gonna be like anybody else because I’d been through something that most people would never go through in their lives, it was hard to explain to people and I’d see things differently and I just felt like I wouldn’t fit in anywhere but when I went to College and I just started getting my life back and I met new people, made new friends, things just started to change and that’s when I just felt like I was, yeah, getting my life back again, living, the few years that I’d lost so, I just wanted to be a teenager and do the normal things that teenagers do, yeah.

Son’I can’t remember anything. Literally, it’s all gone. It’s like I can only see little skips, little bits of information like when the lady came and checked my, to check my pulse once and then a couple of shots that I can imagine. And Mum’s been brilliant with it, we have the diary and the book and the, all these shots that she took of me. That’s my memory at the moment with the thing and that was really frustrating that, heres Mum like talking, talking about me or where I was and everything and I can’t remember anything about it and it was me.

How you felt when you became aware of everything that was, that had happened to you?

Son’It was…

How did you, how did you feel?

Son’It was a bit weird because then I, then I started to read the, the diary and look at the pictures, didn’t I? And I couldn’t actually believe that, that was me once, that, that was me and that if you look where I was before I was then, before I was ill, to then like I am now, I couldn’t quite understand where, where it, where it had all gone and why I, why I couldn’t remember it. Well, it was bit frustrating, really, because I used to see these photos and think, that was me at that time, what, why, why was I there? You know, because I, like I didn’t, I didn’t know why I was there or what I could, you know, it was a bit hard, really. But then, I ‘

Mother’I think you read the diary within a couple of weeks of getting to the rehab the first time and he just stopped and looked at me and said, ‘Mum, could I have died?’ And I decided that as he was virtually 18 and, and hes always been one to face up to things that it’s better at his age to tell him the truth and then wed go from there [cough]. So I just said straight away, ‘yes, you, you could have died.

Son’And that sort of, I think, gave me the big impetus’

Mother”’but you didn’t, I said.

Son’That sort of gave me the big impetus to sort of like survive like or get better.

Mother’Were still stuck with you.

Son’Yeah, you’re still stuck with me [laughing].

During those few days sort of a lot of the emotions which people go through, siblings go through sort of over months, I went through in a few days.

Can you tell me about those emotions?

It, [sighs] it was, I suppose the main one was, why him? Why not me? Because I, wed do anything for each other and I’d do anything for that to be, have been me and not him. And then so I suppose that was, guilt. And is it, I, I think, I’m pretty sure I thought, is it something I’ve done?

Blaming yourself?

Yeah. And…I, [sighs] I suppose there was also…yeah it, it, it was, I suppose yeah, the main thing was guilt. But then there was well, what can I do to help then? And I remember thinking, oh I’ve heard of all this bone marrow transplants and stuff, would that help? I’ll do that. So I, I would have done anything for him. And, I think I said that to Mum and Dad, about this, and they said, ‘Oh no, no’ [falters] I think they suggested it to the doctors or something and the doctor said, ‘No it’s, it’s not like that.

And, I, looking back I know that’s the way I did cope for, I mean I suppose it wasn’t really ’til eight to ten years later that I actually started talking about some of the things and it was only when I could talk to someone else who had been, felt all the same things, or similar things, that it finally all came out. It in fact it was when we went down for a, I went down to, for a meeting to sort of discuss the idea of setting up Siblinks.

And I went down the night before and stayed at [name], that, they, they set up [name] Trust, and who’s the other sort of…

Co-founder?

Yeah, co-founder of Siblinks, yeah [laughs] we, we went for a just a meal in the local pub and this is a sort of a story I say about that is, we were in there and the, there was a little pot of cutlery on the table wrapped in napkins, by the end there weren’t any napkins left [laughs]. What people thought we were talking about or anything I dread to think [laughs] but we were both streaming with tears, and it was, ‘Yeah, I felt that, yeah. And it was amazing, we were just able to, I mean I talk to Mum a lot, not so much to Dad, but I talk to Mum a lot and but theres only so much you can tell parents. Talking to someone else who’s been through the same it’s such a difference.

And this was 10, 12 years after?

It was about eight, ten, eight to ten years later. And it would have been so much better for me if I’d been able to do that straight away, or, so I didn’t bottle things up. I’m pretty sure it’s affected all my schoolwork and stuff, bottled it all up.