Interview 10

Age at interview: 19

Age at diagnosis: 15

Brief Outline: Diagnosed in 2001 with acute lymphoblastic leukaemia. Further tests revealed that he had the Philadelphia chromosome. Treatment: chemotherapy, radiotherapy and a bone marrow transplant. In remission since 2001.

Background: Student and works for the Teenage Cancer Trust. Single; lives with parents

Says that he never felt unwell with the leukaemia symptoms but felt out of breath and was a bit...

Well I was diagnosed when I was just about 15 and a half with ALL leukaemia which we later found out I had the Philadelphia chromosome as well which can't be treated just by radiotherapy it has to, you have to have a bone marrow transplant basically. 

And, but when I, when I was first diagnosed it was kind of, it was kind of weird because my parents were away for a little while and I was staying with a friend and I was just getting headaches and I had like an ear ache, I thought I had a cold but I was getting out of breath really, really quickly and at first I thought it was just because I was unfit, like I wasn't doing much exercise and stuff. 

And my parents came back from holiday and I was really pale. I went down to the doctors and he gave me a blood test and didn't think anything of it. First, first of all we went and had my eyes examined because I was getting headaches and the person who did my eye test said that I looked like I had jaundice, I was really pale and it, a bit yellow.

Talks about his blood tests and his lung test he had before radiotherapy.

They give you a lot of blood tests. And they check your level, blood levels, like your white count, your red count, your neutrophils, stuff like that, stuff that stops you from getting any infection. And they also check your bone marrow to see what kind of leukaemia it is, and stuff like that, I'm, I'm not sure how it all works, but that, that's when they found out I had the Philadelphia chromosome. 

They also did, when they find out you need radiotherapy they do a test where they kind of measure your lungs to know like how to, so, because you obviously don't want it hitting your lungs and stuff, so how to avoid that and I remember having that one done. They put all these stickers on, around you, like around your lung and draw around you and everything like this, so yeah I remember that one being done.
 

Describes having a bone marrow transplant and being in strict isolation afterwards.

How long in to the treatment were you given the bone marrow transplant?

It was, it was probably about maybe about a year, a year in to it. Because I had [coughs] the chemotherapy for a bit and then they found out that I had the, the Philadelphia chromosome so they carried on giving me the, the , they gave me a different course of chemotherapy and which was getting my body ready for the transplant. But then towards the end of about eight, nine months I was ready to have the transplant, and then you get put in isolation and stuff for like a month, and then you have the transplant so for about a year before, I was having the transplant.

I [coughs], I was lucky to be quite a common blood type, I was, so they found someone, they had someone else, they had like quite a few people who matched my bone marrow.

So they, they used someone different. And its a, it's a bit of an anticlimax really because you expect it to be this huge operation and, and it turns up, the bone marrow turns up in a bag, like a blood transfusion and it's up for twenty five minutes, if that, just as an infusion, and then you just wait and see really. They, they kind of, they try and bring you to your lowest point. They, they give you radiotherapy, knock all your blood cells out, so your body's not making any blood cells and your immune system is nothing, you have to be in like a transplant room where you can't have anyone coming in and out all the time, you have one person with you. All your food has to be like specially made and, [coughs] sorry and cleaned and stuff. And yeah they kind of knock you out completely and you have the transfusion and you just wait and then your body starts making cells with the new bone marrow and it kills off whatever cells that are left and you're just waiting from them onwards.

So you were in isolation?

Yeah, in isolation, like living in a bubble kind of thing, you have to stay in a room, you weren't really allowed to walk around outside, whoever was sitting, if your parents were in the room with you, you weren't allowed visitors, whoever was in the room with you had to wash their hands like if they were going to give you anything or stuff like that, so like yeah it was really kind of weird that time.

Do you remember what you thoughts were, around that time? How you felt?

I, I don't remember like the feelings and stuff I had, I remember just, just thinking that like everyone knew what they were doing, so I was just going to say, "right do what you have to do", I'm going to have to just put up with it and if they said I have to do this, saying I'd have to do that, I was like, because I didn't know what was going on, I didn't understand, I'm not a doctor obviously, so they know best, that's all I could think like. 

He does not remember been told he had leukaemia but gradually picked up that this was his diagnosis.

Who told you, you had leukaemia?

My consultant at the, oh who told me I had, I, it, I never remember being told that I had leukaemia, I remember being told obviously but I, I don't remember it registering and I didn't really understand what it was until I started talking about it more and finding more about it. Because I went into the teenage unit and I was, everyone had obviously been in there for a while because they had like the hair loss and a bit pale, a bit skinny and stuff like this. And I had, when I was first taken in there it was kind of like this is what I'm going to look like and I didn't understand like what was going on, I didn't think I had the same, it was a hospital, I didn't think I had the same thing as everyone else.

So I never actually remember being told that I had it, I kind of just picked it up. I probably was told over and over again.

Describes being able to communicate easily with his doctors and nurses in the teenage unit.

Okay, and how was in your experience, communication with doctors and nurses?

Well all the doctors and nurses I had were great. Especially my consultant at my, at the, the hospital I was like through my transplant and stuff, he was amazing. He was like, I was in the kids unit but he understood that I was a teenager and that I was at the point where I, you just needed to be told like what was going on, what will happen, what could happen and not try and sugar-coat it, and he was good at that, he was quite blunt some of the time, but it worked for us, it was like what we needed to know. And if he said, 'This won't work, you need to do this,' that's what we'd do. So we had, we had total faith in him, like he knew what he was doing and stuff so. 

And all my, all my nurses were, were great, I still see them sometimes, like I go back and see them and all the staff like and the nurses that I had at the teenage unit as well, they were amazing, they actually you, you can tell the difference between a teenage unit and a children's unit. 

A teenage unit they weren't wearing uniforms and stuff like this, so they would, they don't feel like they, they were nurses, they felt like, because you got to know them as friends, they felt, you felt like they were just friends who knew what they were doing like and they were just giving you medicine and stuff like this. So yeah, the staff were, were great everywhere, every, every hospital I was in they were great.

Describes the advantages of being on a teenage unit.

And how was it to be in a teenage unit?

Well for the first part it was quite enjoyable, like it didn't feel like a hospital, it was like walking in to a teenager's bedroom because, because you're around, you're surrounded by people your age. So you start losing your hair and everyone looks the same, but they're all bubbly, they're all your age, you're always around people you can talk to.  

We had a mad entertainer, like she used to, she worked, she worked for the hospital at the time and she never used to, she used to be like the co-ordinator and she used to like get a snooker table in the middle, middle of the, the ward. We had like DVD and stuff, she wouldn't give you a chance to like sit down, she was running around getting you like in, involved with all the activities and stuff.  

Which was good, it was just the atmosphere, its like you weren't around crying babies, which was terrible, because I've been in a children's ward, unit as well and you weren't around old people who were moaning that they wanted to die and stuff like this, you were around people your own age who were, were just getting on, started with their lives when they, they got this illness and they're kind of like 'Well just get it over and done with I want to carry on.' So it's like you're all in the same kind of boat, and it, it kind of takes a bit of pressure off you because you, you're obviously, you're scared, you're frightened and stuff, but knowing that other people are going through it as well does kind of help. 

And seeing that other people going through it kind of shows you a little bit of what to expect, even though everyone does react differently to the, to the drugs and stuff like that. But it, it was nice to know that it, it wasn't just you had someone to talk to and you had, you made friends in there and stuff who, they could like, you could help from each other's experiences, you like kind of, you, you , you bounced off each other, you'd like, you helped each other out and stuff.

So you were able to talk to, to each other?

Yeah, to the other people in the unit and stuff. And realised that they were going through the same thing and like, it's like little things that they found, made things better like, I don't know, you, you had set like a certain food and a certain drug that you're on and you just feel a little bit better. Or certain ways of doing things like people would find the ways that worked best or them and then share it with you, so it's like trying to make you more comfortable and stuff like that, yeah.

Okay. So you give tips to one another?

Yeah, little tips.

Trusted his doctor because he was always explaining things and telling him if he was going to...

And how was in your experience, communication with doctors and nurses?

Well all the doctors and nurses I had were great. Especially my consultant at my, at the, the hospital I was like through my transplant and stuff, he was amazing. He was like, I was in the kids unit but he understood that I was a teenager and that I was at the point where I, you just needed to be told like what was going on, what will happen, what could happen and not try and sugar-coat it, and he was good at that, he was quite blunt some of the time, but it worked for us, it was like what we needed to know. And if he said, 'This won't work, you need to do this,' that's what we'd do. So we had, we had total faith in him, like he knew what he was doing and stuff so. 

And all my, all my nurses were, were great, I still see them sometimes, like I go back and see them and all the staff like and the nurses that I had at the teenage unit as well, they were amazing, they actually you, you can tell the difference between a teenage unit and a children's unit.  

A teenage unit they weren't wearing uniforms and stuff like this, so they would, they don't feel like they, they were nurses, they felt like, because you got to know them as friends, they felt, you felt like they were just friends who knew what they were doing like and they were just giving you medicine and stuff like this. So yeah, the staff were, were great everywhere, every, every hospital I was in they were great.

And the doctor, the consultant that did the transplant you liked him because he was kind of honest and explained things clear?

Yeah, he kind of, he just made you feel safe, he made you feel like he, he was in control, he knew what he was doing and everything that he was doing was in your best interest. And he'd keep you, he'd tell you exactly what was going on, didn't leave you in the dark about anything. If he had asked some, another colleague of his like what 'Would be the best thing to do in this situation?' he would tell you that he's like, he wants to do this and he's found out other people that say that this is a good idea. And he wasn't afraid to like, if he felt that he wanted to change part of the, of, of the medicine say because he thought himself that he'd feel better, find out about it and he wasn't afraid to like ask you whether you did it or not. Saying things like 'This might work, or you might feel better with this,' and stuff, so yeah he was, he, he, he just made you feel a lot safe, a lot safer. And a lot more confident in the stuff that was going on, because there was times when you were taking so many drugs that you're feeling terrible, you're thinking that this is making me feel worse, and aren't these drugs supposed to make me feel better. So you just want to say 'No I don't want to take them, they're making me feel terrible,' and stuff like this, and he'd just reassure you what they are, that's what they're supposed to be doing, you know, they're going to make you feel like crap, but that, that's what the, part of the job.

Okay. And you felt that you were treated like a teenager?

Yeah, well I thought I was, they, they started talking to me rather that my parents, like a lot of the time my parents would answer for me, but they, as well as telling my parents, they were telling me what was going on. And like so that I would have to make some of the decisions as well. So it made you like because you were growing, you're growing up at that time, I was, I was like just getting freedom and stuff like from the age that I was and becoming a young, young adult they, they were giving me that privilege and stuff. They were giving me the benefit of like talking to me rather than going through to my parents and stuff like that.

He is not apprehensive when he goes to his check-up appointments but says that the thought of the...

When you go to have your check-ups do you feel a bit apprehensive or'?

Not really like, I, I do know some people who as soon as they walk into the hospital, they hate the smell of it and it makes them feel ill after being in like having treatment. The only thing that I don't normally like about going back to the hospital for the, for the check-ups and stuff is because I was on a kids unit and you see all the kids who are crying and screaming and stuff upset, now knowing what's going on and that, that does make me a bit upset and stuff, but it's what you have to you, you have to go and have the check-ups so you just try and deal with it.

When you knew that the transplant had worked, how did you feel, do you remember?

I don't remember feeling that it was a relief because when they said the transplant had worked it's like there's still so much that, else that's going on like you still need to take this and it was, it was not until I had [coughs] a check-up and they said 'You don't have to come back for a year,' that I thought that I, I felt fine, like it was kind of a relief. 

It's always in the back of my mind like, it, and it'll probably still always be the same, you're always worried it might come back, there's always a chance, like because you know that it can happen. Like I don't feel like I did anything wrong to deserve it and I don't, there's nothing that I did personally that made it happen, so it kind of, it's out of your control. 

So there's, it's always in the back of your mind that it could come back, but you learn to deal with it like that's what, why I try and like look at things like just enjoy them while they're happening and stuff. And I suppose if it does, if it did come back then I'd have to deal with it at the time, but you try not to think about it because you're just enjoying like what's going on now and stuff. After going through something like that you just, you appreciate what you're going through at the time and you just, you know that things, because unless you, it came back things could never get that, like you could never have a situation that's that bad. So it kind of makes you feel like you could get through anything. Which is good in some ways, because you learn to be a better person for it and stuff like that, so.

It is a scary experience but you have to do what the doctors advise.

What would be your advice to another teenager who is about to start treatment or is, beginning to experience a cancer?

Just that it gets really scary really quickly, but you have to like do as you're told, which is the last thing you want to do when you're a teenager, but you just have to trust that the people that are trying to make you better, it's just trying to make you better, they're doing everything in your best interest [coughs].

And you also have to be patient, you learn to be really patient once you're in hospital and you're just waiting around doing nothing. And you have to want it, you have to like, it's a really hard struggle, so you have to want to get better. You have to understand that you're going to have to put a lot of effort into it and it, it's going to be the most important thing in your life at the time so you're going to have to put everything aside like friends and family and just be selfish, concentrate of yourself and if they are, like your family will understand that and your true friends will understand that as well. And they'll know that that's what you need to do, so you have to just not worry about anything, just be totally stress free and just try and look yourself, that kind of thing.