Cancer (young people)
Being in hospital
When young people with cancer have to go into hospital, they may be treated on a ward for children, a ward for adolescents or teenagers (though not all hospitals have these), or on a ward for adults. The ward that a young person is treated on depends on the young person’s age. Young people under the age of 16 in the UK are typically treated at a specialist children’s cancer Principal Treatment Centre (PTC) with some treatment given in a designated Paediatric Oncology Shared Care Unit (POSCU) in hospital.
For young people aged 16-24, treatment is likely to be provided at a Teenager and Young Adult (TYA) Principal Treatment Centre (PTC) or at a TYA Designated Hospital (DH). PTCs are hospitals that are qualified to give specialised, age-appropriate treatment and care for teenagers and young adults with cancer*.
Describes the advantages of being on a teenage unit.
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.
The National Institute for Health and Care Excellence (NICE) states that it is ‘important for [young people] to be seen by both a cancer-site-specific multidisciplinary team and a teenage and young adult multidisciplinary team, to ensure that they have a correct diagnosis and receive the most effective treatment’.**
For young persons aged 19-24, it is recommended that they be offered a choice of where to receive treatment: either at a PTC for teenagers and young adults or supervised by PTC specialists at a designated hospital in the adult cancer service ward.
Sometimes, though not always, wards will be specifically for people with cancer. Where treatment occurs may also depend on the type of cancer and the individual situation. Depending on the type of treatment, it might only be necessary to stay in hospital for a few days, but some of the young people we talked to had to stay in hospital for several weeks, or even, on rare occasions, for months.
Young people's experiences being in hospital
A children’s hospital ward can provide both entertainment and distractions, and can also include organised activities. Most of the young people we talked to had stayed in a children’s ward specialising in cancer and they praised the high standard of care and the willingness of the nurses to talk, answer questions and take their time when providing explanations.
Some of the young people we interviewed said they regretted that, at the time of their treatment, there weren’t many facilities available specifically for people in their early teens, as children’s wards were not always the most suitable, as they can be noisy and there may be a limit to the number of times people can watch and listen to children's programs and theme tunes! Wards with very young children can also be distressing if the children got upset and cried, but it can be amazing to see how quickly little children can bounce back after a lumbar puncture or other medical procedure.
Said that the children's ward was boring and that there should have been at least a 'Teens' Corner in the hospital for young people to meet.
Said that the children's ward was boring and that there should have been at least a 'Teens' Corner in the hospital for young people to meet.
What are you feeling about sort of having to stay in hospital?
It was boring when I stayed in.
Boring?
Yeah, there was nothing to do. Then when I did have the chemotherapy when I was in I was too tired to do anything anyway.
Ok, what do you think they should improve for people your age in hospital? What do you think they should have?
Dunno. A teen, a teen part of the hospital maybe.
Yeah?
'Cos it was all children. Like, there's a children's play area with books and crayons and that, but I wasn't going to go in there. It's for children.
So you would have preferred a'?
And then you, if you had a teen bit you could get to know the other teens too.
Did you meet other teens, other teenagers or?
Not really when I was in, but going back to, back and forward to the clinic, I know more now.
Young people in their early teens can spend time on both children’s and adult wards, and those we spoke to were able to make comparisons between the two. Although some felt comfortable in both environments, others preferred the children’s ward because they felt they were more sympathetically looked after by the children’s nurses. Parents also commented that, unlike adult wards, nurses on children’s wards seemed more sensitive to the parents’ needs as well as to those of their patients.
Describes the care he received from the nurses on the children's ward and how much he learnt...
Describes the care he received from the nurses on the children's ward and how much he learnt...
Much better nursing care. I'm not saying that there's 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 people's 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.
His mother discusses the differences between a children's unit and an adult ward. Staff on...
His mother discusses the differences between a children's unit and an adult ward. Staff on...
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.
Some young people we talked to found adult cancer wards hard to cope with because other patients were 'as ancient as their grandparents'. One young woman said she suspected that her being on the adult ward might have been 'unsettling for the older women there, who didn’t talk to me'.
It can also be very tough when other people on the ward die, which is something that happens more often on adult wards. A depressing atmosphere on the ward certainly does not help you to feel better yourself, and is particularly difficult to cope with if you have a lengthy stay in hospital. Another factor with adult general wards is that they tend to have more restrictions on visiting hours, whereas in children’s wards, parents are allowed to stay and visit as often as they like.
He was moved from a single room to an open adult's ward which he found depressing.
He was moved from a single room to an open adult's ward which he found depressing.
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, there's nothing, there's 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].
When she was on an adult's general ward the limited visiting hours was the major problem.
When she was on an adult's general ward the limited visiting hours was the major problem.
On the other hand, experiences with serious illness can break down social barriers: for example, some of the young people we spoke with said they greatly enjoyed talking to older adults on the ward and found they had a surprising amount in common with them.
As a 17 year old on an adult ward he was with people his grandparents' age, but enjoyed the...
As a 17 year old on an adult ward he was with people his grandparents' age, but enjoyed the...
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.
Different hospital wards are arranged in different ways. Some of the older wards were set up as large long rooms with beds all the way down each side, while more modern wards were arranged in 3 or 4-bedded or single rooms. Although when you’re feeling really ill you may not mind what sort of room you’re in, some young people said they did not like being in a single room on their own and would have liked it better to be in with other young people. Others said they preferred peace and quiet and wanted to keep to themselves. One person made a comment that 'being in hospital sometimes felt like being in a prison and a release would be wonderful'.
Felt lonely and bored in his single room and says it felt like being in prison.
Felt lonely and bored in his single room and says it felt like being in prison.
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 there's nothing to do. You've got a TV and, but there's 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.
Was given the chance to choose between a single room or a ward and opted for the single room...
Was given the chance to choose between a single room or a ward and opted for the single room...
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.
The number of specialist teenage cancer units since these interviews has increased across the UK (see The Teenage Cancer Trust website and our ‘Resources and information’ page). The atmosphere in these units was generally described by those we spoke with as enjoyable and provided the opportunity to realise that they were not alone, which, in turn, seemed to provide an important source of informal emotional support. The nurses were cheerful, tended to be young, and the atmosphere of the place was 'upbeat'.
Stephen appreciated being with other young people on a specialist teenage cancer ward when he was having his chemotherapy. He also found going back to school during his treatment helped him cope.
Stephen appreciated being with other young people on a specialist teenage cancer ward when he was having his chemotherapy. He also found going back to school during his treatment helped him cope.
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.
One young woman noticed that young people in her teenage cancer unit tended to talk about 'mundane things' rather than about 'raw feelings and emotions'.
He would have preferred an open ward on his teenage unit because he was bored and would have...
He would have preferred an open ward on his teenage unit because he was bored and would have...
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.
Some young people who went into hospital for short periods of time often said that they preferred being at home. They found that the side effects of their treatment lessened when they were at home: they said that their 'mum’s food was better', and they felt that they could rest better at home, 'where they were not constantly reminded about their illness'. However, most felt that the hospital was the best place to be if they were seriously ill.
Describes the advantages of going home immediately after his overnight chemo sessions.
Describes the advantages of going home immediately after his overnight chemo sessions.
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 there's 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.
The young people we spoke to frequently commented that the nurses were 'great', or 'just wonderful’. They praised the nurses not only for their professionalism but also for their sense of humour, compassion, and sensitivity. For young people, nurses could make the stay in hospital a far less scary experience. Although on occasion older teenagers thought that being seen by a children’s ward nurse could be 'a bit patronising', most thought these nurses were ’just great’.
Nurses tended to be less formal than doctors and young people found it much easier to ask them questions. Some young people also had care from specialist cancer nurses called 'CLIC’ and 'Macmillan’ nurses. Others had specialist cancer social workers from Sargent care. The care and information from all these people was much appreciated.
Says the CLIC nurses and the nurses in the children's ward were 'great' and gave him all the...
Says the CLIC nurses and the nurses in the children's ward were 'great' and gave him all the...
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.
A 16 year old boy comments that some of the nurses were not much older than himself - and some...
A 16 year old boy comments that some of the nurses were not much older than himself - and some...
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 there's 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, she'd 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 there's 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?'
*'Teenage and Young Adult Cancer MDT.’ NHS Oxford University Hospital, 29 October 2024. Accessed November 2024.
**‘Cancer services for children and young people,’ Quality standard [QS55]. NICE, 27 February 2014. Accessed November 2024.
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