And what was your experience of being in a ward with children?

Much better nursing care. I’m not saying that theres anything wrong with the adult one but it’s more kind of you know nurtured side and you know more, more cared, not that there isn’t enough care but it’s more personal, you know they got to know you and all the nurses got, all the nurses got to know you and they’re all kind of when, when you’re feeling good, when you’re not, what to do when you’re good, you know. Whereas with adult wards I’ve, obviously I haven’t been in one myself but as you see them you know obviously I’ve been in with people that have been, into the ward and that you know it’s not that way because it’s an adult ward you’re not in there at least once a week so the nurses don’t get to know you that well you know. So being on a child ward was an experience. I would call it an experience, not a great experience for the fact that I was having treatment and that and I was in because I was sick but a great experience because I got to meet so many people and learn about different peoples illnesses, how other people coped with it you know it was an experience. So like I said from the beginning two sides to it, bad and good.

How did you feel, did you feel in a way treated like a child or a?

Son’When I was at the hospitals?

What’s your opinion?

Son’I think in the ward I was looked after very well, everything was well nice, was really nice to me and I couldn’t really fault anyone there and I made lots of friends down there as well, didn’t I?

Mother’The care there wasn’t just medical. The, the support was for the patient and his family.

In the children’s ward?

Mother’Yes. As soon as I’d got there accommodation had been arranged, [cough] I didn’t have to think anything. We were catered for. In the second hospital with his radiotherapy it was an adult ward and it was just the patient. Now the difference was huge and it was, it was a, it wasn’t a nice experience, certainly in those first few days.

Have you met other young people like you there?

I know of young people like me but it’s, it’s overwhelmingly older people.

This is in oncology?

Yes.

Oh, ok. How do you feel about spending time in an adult ward?

Well, for the first treatment and a half I got my own room. But, but then they moved me into a ward and that environment is quite difficult to, you get, you get used to being, ‘cos, ‘cos some of, some of the, the people in the ward obviously look extremely ill and that really does grind you down after a few, after a few days. I mean you become very aware of it, you know you almost, and I almost isolate myself off from them. You know, thinking of them as ill while I am the only sane man in the asylum so to speak.

Ok, so you can, in a way it could have a negative effect on you?

Yeah, yeah, yeah it does, it, it’s quite depressing, especially as you’re stuck there all day because of, because you’re attached to a drip which needs to be attached up to mains which means that you can’t actually go anywhere but the, but the toilet, all day.

Ok, there are no teenage units around this area?

I could have been put, as far as I know there aren’t. I could have been put on a children’s ward but apparently they’re really noisy and I’m a more quiet person but, but that, that’s just the way they do things at that particular hospital.

Ok.

Although they are planning for a teenage area, small teenage area which they invited me to submit ideas for.

Mhm, ok.

But there have been other, a few other young people in the ward at the same time as me, but, but really, we haven’t communicated a great deal.

Why do you think is that?

They’ve either been surrounded by family or I’ve just felt a little awkward. I mean I, theres nothing, theres no reason why I haven’t done it, I mean I haven’t set out not to do it but it’s just how things have turned out really.

Ok, because the atmosphere is not one that you feel sort of…?

No, it’s quite a, very, by the final, by the final day of one of my treatments everyone in the ward was elderly and you know it was complete silence for the whole time. You know, and my mum was there, but we would, and we were stuck in the same silence as well. There was a, you know an atmosphere can develop very easily.

Yeah, just gloomy.

It, it can be. But at the same time, just because there are older people there, it doesn’t necessarily mean it has to be gloomy. I mean some of them can’t stop talking [laughs] you just want them to shut up [laughs].

So obviously, I mean, especially my mother, she, shes been through it all with me but she was totally distraught. But we, we got in the car and made it to the other hospital, where I was taken to a big ward where people were recovering from surgery. So thered be like people with that had, had their varicose veins done, old ladies that were having minor ops done, that sort of thing. But the bad thing about it was that because it was a, the ladies in there needed a lot of rest, the visiting was two till eight, which wasn’t very good for my part because they’d just told me that I’d probably got cancer and then I’m not allowed any visitors so I’ve just got to sit there on my own and cry basically. So we got to the hospital, my parents stayed with me for a few hours and we were told that it would actually be the following day, on a Saturday, when they would do the biopsy. So eight oclock my parents got kicked out of the ward, and I just had to sit there on my own [slight laugh] which, I mean, looking back, if, if now, obviously ‘cos I’ve got my strength I would have just, you know, kicked up a fuss but at the time you, you, you just your minds not with you, you just, you know sort of go along with it do what you’re told.

In hospital because I was 17 I think that the sort of, there was, well there wasn’t really the, the, there weren’t teenage wards really they, there weren’t teenage sections available really for people of 17 or adolescents. They were either adult wards or children’s wards. And because I was 17 it was seen as more appropriate to put me with adult wards, in an adult ward.

Now its got sort of, it, it can go either way I think, you can either be in a situation and think all the bad negative things about it or you can find yourself in a situation and think and, and try and draw out the good things in it. Yes there are bad and its very important to acknowledge those but for instance I was in an adult ward and really what an adult ward means is that its if you like its not people generally in their 20s, its not people in their 30s or 40s, its generally people your grandparents’ age.

But it was very good because there was this, I, I was in a hospital in London and I was in a ward bay and opposite me was a, a pensioner but he was a real cockney Bow bells kind of guy and we used to make each other laugh so much that you know both, because we were both in a really sort of dreadful situation I think that we just got on with it and that, obviously is a situation that throws people together.

And age, age in that sense didn’t really have the, it wasn’t an issue to, to, to me. But I think its not so much that you need to be in a certain ward as such but you, your needs as a teenager as you know a, a young person need to be addressed differently from those of a young child, an adult in their 30s or an old, older person.

But when you’re, while you’re receiving treatment tell me about your feelings about being in a ward in which you have your own room rather than being with other people?

You’re, it, it gets very boring. It’s, it’s like prison and now that’s how it feels to me. You’re in one, in one room and theres nothing to do. You’ve got a TV and, but theres hardly anything ever on it. And you’ve got your own telephone line but I don’t feel like talking much. A lot of people who do phone but sometimes you don’t have the strength. You’re just sitting down all the time. You’re sitting down and you’re just thinking to yourself what’s going on. What’s happening with your life and do don’t know what to do.

Do you have a, or have you discussed with doctors whether there is a kind of young person or teenage cancer ward here in this city?

I haven’t discussed that with my doctors.

What would you say while you’re receiving treatment that you would like to be in a young person’s ward?

That would be helpful in a way so you can see other people as well. What they are going through. It might make it easier on yourself as well.

So it is the isolation that is also quite tough?

The isolation is quite tough because I was a very outgoing type of person and that and straight away being locked up and not being able to see more than two visitors. I’ve, I’ve had more than two visitors anyway. Don’t I always have a handful of visitors. The doctors are always complaining that you shouldn’t have too many visitors but I still do. But it’s hard going.

No. Not really. I just kind of kept it to myself. People knew what I was thinking, I think, but generally just kept it to myself. And just talk about anything else but. That was my plan, so, try and keep as normal as you can. In hospital they, sometimes thinking about putting you on a ward with people your own age, and something they actually asked me about what would you prefer for the future – for them, would you want people the same age, maybe four of you, in maybe an open plan ward, but I couldn’t think of anything worse really [laughs].

Really?

Yeah. I know they said it was odd at the time, because most people would love, love to have more people, you know, going through the same thing, or similar things, but I was just thinking I’d rather be on my own, because of what you’ve got to go through, you know. Getting up every hour, say, to go to the toilet, being sick all the time. If you’ve got someone there being sick next to you I don’t think it’s going to make you feel much better, so.

Yeah, as an inpatient I was treated on a specialist Teenage Cancer Trust ward, which so I was treated with other young people my own age, which was incredibly helpful just to know theres others out there, so that made that experience as bearable as possible. And then when I was treated as an outpatient I was kind of in-out, so it was kind of relatively in hospital for two hours, it was a bit manic in the kind of day case centre they had but because it was only outpatient I was back home that night I couldn’t really complain.

So in the Teenage Cancer Trust ward I got to spend time with other young people, and there was stuff teenagers use, there was PS3’s [Play Station 3’s], there was musical instruments, which kept me busy through chemotherapy because of course chemotherapy is not the nicest stuff.

No throughout all, all of my chemotherapy treatments I went back to school as much as I could and kept up with studies, and that was

Oh you did, good.

my way of coping.

Fantastic. How did people react at school?

I was quite surprised and probably a lot of teachers or for example a lot of people wanted to try and wrap me up in cotton wool and say I was doing too much, but no I enjoyed trying to do something it paid off and in my GCSE year for example, this was when I was first diagnosed so when I had surgery and the six months of chemo, then at the end of it I got five A* and 4 A’s and 2 distinctions.

You were treated in an adult ward?

No, teenage cancer unit.

Ah ok, ok. Tell me about that, how was that?

It was, weird if anything. It’s you all had your separate rooms which weren’t such a bad idea but I’m one of them people that like to be with a load of people sort of things. But they had like a function room where you, you, you met a few of them like and you had a play station and like your own personal TV and stuff like that.

Would you have prefer, would you have preferred to have a kind of share room with more young people?

Yeah, it would have been better off with a shared room sort of thing. ‘Cos you, if you needed someone to talk to or owt like that, you, you’d have that company rather like some people prefer to close their doors and stuff, and bottle it up and it seems to drag em down a bit more than it should do.

I talked to quite a few people but, like I say, with the isolation of just the single separate room sort of thing it’s a question of you, you’d get on with quite a few people and other people from the other wards sort of thing.

As I say, I didn’t feel too isolated there but like I say it was one of them I could have done with open ward sort of thing, like I went for me bone, scan, not my bone scan, me bone biopsy it was basically it was like a three bed ward sort of thing with a horrible TV in the corner sort of thing and you, you generally chat to the two people, the other two people which are beside you sort of thing. And so playing cards and stuff like that, but the other hospital it was a question of you had, when in Rome and you thought it was a, then you If the door was open say hello and if they responded and, you know, it was quite good.

So I mean the open kind of ward setting you found it better?

Yeah

Did you tell the nurses at the hospital where you, you received the chemotherapy treatment about your, what you thought about the accommodation?

Yeah, as, as I say I liked the hospital itself but it’s and I sort of said to them, ‘It’s a good hospital and you can ask the staff,’ and I was just saying ‘It just seems a little isolated, sort of thing. And she said, ‘Oh she knows it was, it was one of the patients that designed the ward and that wanted to be on her own sort of thing and that’s the way she designed it sort of thing.

And sometimes chemotherapy went up to about 18 hours, sometimes 12 hours, another six hours, depending on how long, how big the bag was, how much, how much the dosage was for each one. I’d have that, and by the time it had finished I’d be really worn out. It would be about, it would be pretty late, because I normally had it in the morning, it went through the day, into early morning kind of nightish, and my brother used to pick me up from hospital because I recovered better at home. So it was better that I stayed, stayed at home. If I’d have stayed there, I end up being worse, because I end up I couldn’t eat there, the food wasn’t that good. And even the environment reminded me of being ill, so it was’

In which way? Can you tell me?

Oh. Just, like, seeing everybody else ill as well is one thing, and kind of, is kind of the Pavlov’s dog thing and you had a bell and things, you sort of just’ you remembered this food or whatever. When I saw the drips and the touching of the pipes and everything, and the smell of the alcohol wipes, and the nurses, and kind of the people around me, and the beds, the way they were, I can remember being ill, and I felt ill as well. I felt weaker. That’s because I had been so long just being there. So I felt a lot better at home, I felt safer at home, and chilled out, relaxed at home. But at hospital even just being there for a check up, whatever, I still feel kind of it’s not, not right. I still feel a bit ill.

Even now?

Yeah. Or’ I’m sort of over it now, but kind of reminds me of it, and I think if I stayed there for another, like a night, on my own, it’s like I was before, and I’d still feel really sick. Just not even having treatment I’d feel a bit weird. I couldn’t eat there anyway, because kind of remembering how it is. Yeah.

Were you in a Children’s Ward?

I was, yeah. But sometimes in my own cubicle, which was a lot better. I’d had, had my, I’d have a TV there or whatever. I’d watch TV, and be chilled out. But when I was on the ward, you can’t really rest, because theres kids crying and stuff. Well, not really’ I ain’t blaming them, but it’s really sad. So you can’t really keep your mind at rest. And you see everyone walking around and it’s not, it’s not very ‘ hospitable in this hospital. It’s not very nice like that.

Okay. So you prefer to be at home with you family?

Yeah. Probably. Yeah. My brother used to be really nice to me, and used to pick me up in the morning, at whatever time and stuff and bring me home, so I would go like Burger King or whatever, so I could at least eat, I couldn’t eat there. I could eat at home, whatever. And I just feel a lot better at home. I can stay up on the internet or whatever. I felt a lot better at home whatever I did.

And how was your communication, your relationship with the nurses in hospital?

They were great. I was on the children’s ward, and at sixteen you’re on the upper side of it. You’re one of the older ones in there, but they thought it would be better for me to go in there. I think it was a good decision. They were so good to me, you know, always – they treat you good for your age. They’re used to treating all the young kids, but as soon as it comes to you they treat you how you want to be treated, like more of an adult, so they couldn’t have been better, so, very good.

So were you able to talk to them and?

Yeah.

Were they explaining things to you?

Yeah I had a CLIC nurse, through it, from CLIC. They were great, they’d be probably the main nurse involved with you, so they’d be the ones explaining it, along with your consultants, because they’re, you know, child consultants. They’d go through it really well. One thing they did say to me was, “You don’t ask any questions”. I thinking, “You’re doing your job well, you’ve told me everything I need to know, I haven’t got anything else to ask”. But yeah, they did keep saying that, “Ask more questions”. But I didn’t need to know anything, so-

So you didn’t ask?

No, I didn’t. No. There was nothing I could have wanted to know more. They’d just tell me.

Yeah. Nurses weren’t, well, they weren’t much older than me, really, some of them were like 20 year olds or something and some of them were really pretty as well, so it was quite good talking to them [laughs]. And they’re always there. The doctors had more people to deal with. Theres about, what, two doctors between 15 kids, and theres about twenty nurses with 15 kids, so theres more of them to go round, so I don’t always want to bother the doctors with asking them questions, so I asked the nurses.

Why? Is it because of the age?

Yeah. And they, they sort of, they talk better, on a better level, as well, because they’re like, they’ve only, they’ve been at school and stuff, and living the same life you did only a couple of years ago, so theres not much difference.

So the language maybe is more similar –

Yeah.

– to yours, then.

Yeah. And they can talk about the same sort of thing, like music and stuff. They can talk about, talk to you about that or whatever. Yeah, it was, yeah, I talked to some of the nurses more than the doctors, most of the time.

Okay. And you found that they tried to answer, or find the answers to your questions?

Yeah. Nurses, some of them were really, really good. I, like two, two or three nurses were, like, amazing. They were always there for me. Whenever I was ill and stuff, or it, one of them used to always have work during my treatment and stuff. She used to always, like, I used to like the way she looked after me and stuff. When I was ill, shed come running to look after me, and always be there for me, like, really mother me and stuff, and I liked that, because you feel better, shows someone, like, cares about you and things, so you feel better, because your Mum’s not always there, is not always there to look after you, and you can’t talk to everyone, because theres kids, like, they’re really young, and you don’t want to talk to them, so someone who’s there, makes you feel, feel a lot better. It shows you, like, your own individual nurse, you feel a lot better, who you can actually talk to and sort of thing. There was one male nurse, one male nurse, in my Asthma Ward, when I was in the Isolation Ward, when they thought I had TB, and he was really, really good as well. I used to play station with him, and I think you are not suppose to but, used to be really cool, because I had no one else there. Sometimes and it will be late at night, and I couldn’t really sleep and stuff, and people who’d been there, you feel more better, you feel more comfortable, because you never feel like ‘Why me?’ You never asked that, because you’re gaining a bit of stuff out of it. You’re still having friends and things, and being able to socialise with people. So you never really ask, you never get to ask, ‘Why me?’