Cancer (young people)
School and work during and after cancer
Having cancer can be hugely disruptive to a person’s everyday life and activities, including to their school and work. Here, the young people interviewed talk about how their own individual lives have been affected as far as their work and their education were concerned. This included the problems they experienced, their feelings about going back to school or work during or after treatment and the reactions of their schools and their teachers. How friends and peers reacted when they went back to school is covered in 'Impact on friends’.
For many of the young people that we interviewed, having cancer meant missing one or more years of school or university, and, on returning, finding a whole new group of classmates. This could be hard to deal with because they missed their old friends and were nervous about making new ones. Some were also scared or embarrassed to go back to school during or shortly after their treatment ended because their confidence was low and they were concerned about how other young people would react to them looking so ill, with no hair, and being either thin or overweight (see 'Body image during and after cancer’). Others found the idea of interacting with people their own age difficult because they had spent so long away (see interviews 09, 08 and 25).
She refused to go back to school while on treatment because she was scared and embarrassed.
She refused to go back to school while on treatment because she was scared and embarrassed.
I never went back. I went up to start at, to start back school, then I've seen my guidance teacher and I says, 'I can't go in. No want to go in.' So I started crying and this, she says, 'Well do you want some of your friends from your class. Can your best friends to come up and see you and that?' I went, 'No I just want to go home.' So then we went back outside and they were in the car park coming home from lunch aye? So then I did see them before I went home. But I still keep in touch with them as well.
And you didn't want to go back to school?
No, I didn't want to go back.
Why?
Scared.
Scared of what?
Embarrassed and,
Embarrassed of what?
Dunno [laughs] people looking and
People looking at you?
And talking and everything.
So you were concerned of why, of how they would receive you?
Yeah.
Did the school or the head teacher or whoever talked to the kids?
Yes, 'cos they had to say that, like if you've got a cold or that you can't come in 'cos I might catch it so they had to tell everybody in school. And that's what made me most scared, 'cos everybody knew.
And you felt embarrassed?
Yeah.
Embarrassed because everybody knew that you had leukaemia?
Yeah.
At that time you had lost your hair?
Yeah, had a hat on.
Was that something to do with you not wanting to go back to school?
Probably, think it was.
Ok, and so you stopped going to school altogether?
Yeah, then I was, exams were, well they gave me grades on my exams 'cos they're third year work. And then I never went back to school.
Postponed going back to school until his hair grew back.
Postponed going back to school until his hair grew back.
And I found it like quite weird going back the first day like because you hadn't been there and everyone was like you didn't know if they were gonna be like friendly or if, what's happened if they've changed, if they know what's happened. But everyone was really okay. And all my friends were like interested what's happened. You had to explain, everything went on as normal.
Okay, so they were asking questions?
Yeah, asking questions to see what happened.
And at that time you had lost your hair or?
I no I was, during radiotherapy I didn't go back, I stayed at home during that, I didn't go back until it was grown back a bit because I didn't really want to go back without my hair. And I was a bit, I was scared really because I didn't want them saying 'why have you lost your hair?' and maybe people taking the mick. I was worried.
Okay.
Yeah.
So you waited?
Yeah for a while until I had like a Grade 1 or a Grade 2, because they said I would be okay if I had that because I was a special case.
Okay so that was your main reason for not going?
Going back as soon as I could.
Young people identified several specific problems about going back to school that resulted from their illness or treatment. They found that even many months after their treatment had ended, they could still feel exhausted. For some there was the possibility of having physical limitations and no longer being able to engage in sports. A few who had had brain tumours had memory and concentration problems. Others who were too ill to attend school during their treatment had had a home or hospital tutor, or their school sent them work to do at home.
Another problem experienced was the increased chances of catching an infection, and they would have be absent if there was an outbreak of illness at their school or work. Young people who were able to attend school during treatment did so whenever possible, but this was often on an irregular basis. Luckily, quite a few young people were able to study and take exams remotely while undergoing their treatment.
She could not do Physical Education at school and sometimes found it difficult to concentrate.
She could not do Physical Education at school and sometimes found it difficult to concentrate.
And you said that you can't do PE?
Daughter: No, because when I run it's hard, it still, I still get quite tired and I have nowhere near as much as what I used to.
Mother: You were worried about the head being banged as well.
Daughter: And if I bang my head or something it could make me ill again and.
Okay. Are you on any medications at the moment?
Daughter: No, I'm not on anything.
I would like to ask you how did you find studying after? Are you able to concentrate well?
Daughter: I do get it sometimes, like some days I can go into school and I'd, it's just all way over my head, I don't have a clue. And I just cannot settle down and concentrate and everything, I just sit there and it's, it's as if it's going in one ear and going straight out the other ear, but then most, I only get that like every so often, usually I'm absolutely fine, I can get on with my work fine and come home and do all my course work and everything.
Her school organised for her to do A level course work and exams at home.
Her school organised for her to do A level course work and exams at home.
Although for some their education had been an important part of their lives even before they developed cancer, for others, having cancer made them realise how important their education actually was. For instance, a young woman who was determined to continue her A-Level revisions in hospital while receiving chemotherapy treatment found that she did not have the energy to do so (see interview 13). Another young person we interviewed found cancer a 'massive inconvenience’ because it disrupted his educational project (see interview 04).
Several indicated that their cancer experience made them more aware of their strength and resourcefulness, with remarks like, 'Now I know I’m able to do anything I want as long as I work for it’, or, ’I don’t think I would have gone to university if I hadn’t had cancer’. Many took the attitude that they should use their time more wisely and plan for the future saying, for example, 'I need my education because I want to be able to get a good job’ (see interview 12). School was also seen as important because it meant getting back to their normal routine and social life instead of feeling isolated at home.
On the other hand, a few found it very difficult because their illness had left them with memory problems, so feelings of wanting to ’give up’ were relatively common. This was particularly frustrating for those young people who had been especially good students before their illness but then found themselves struggling to remember even the simplest information. A young man with memory problems who had a home tutor to support him through his GCSEs had to find new ways of learning, which was hard. A girl that had successfully finished her A-levels and then a degree in bio-medical sciences said she found that doing exercises on her computer and having a scribe were particularly helpful (see interview 17).
He successfully completed his GCSEs but it was a long struggle.
He successfully completed his GCSEs but it was a long struggle.
You studied at home?
Son: I studied at home. About, probably about part way through year eleven towards the later end of year eleven, from right up Christmas time onward then I used to go in for a couple of lessons a week, like some of the science lessons and the French lessons where the science because the more practical hands on stuff and French is quite hard to learn without having a tutor, that your teacher there, so but the home tutor was marvellous, she absolutely brilliant.
One of my, her helping main reasons I managed to get on and do some of my GCSEs because they kept, they kept on at me, like helping me, I mean she was a big Aston Villa fan which really helped, because we had something on a common ground which we both liked. So sometimes she'd come to tutor me and I wouldn't be feeling too well or I'd be tired so instead of like tutoring me there she just, we'd just talk about the football from the weekend or something for a while until I felt a bit better and got on with work.
And then when I was going for these lessons eventually we arranged it, she would drop me off at school for the lesson or she come from, I'd go in for, in the morning for lesson and then she'd come pick me up and bring me home to tutor me, so she was wonderful. I owe so much to her because she kept me going, kept me going sort of thing throughout it and kept on pushing me to carry on and not to get, because I can remember doing that time a lot of feeling do I just want to give up because it was all too hard and too much, feeling very angry at the time.
Because I mean I had to work doubly hard, more than, do you know what I mean, I was a clever lad before me illness, I was in all top sets and A's all the time and everything like that, so, and then when I tried to start doing, back and do work then after being ill and find, it was very hard and tough to do it, so it was a struggle but.
Mother: An immense struggle.
Son: Immense struggle, yes [chuckles].
Mother: We, we, it, that was a, I think that was almost as hard as when he was starting to go through the radiotherapy, because he was having this internal struggle with himself. This battle that he, he knew he knew these things but because the memory problems as well, he had to overcome those, he had to learn new ways of learning, and new ways of recalling the information and that was a, a real hard slog. And he had also the problems with his eyesight because his field of vision was damaged by the tumours and the surgery. And so we had to get the visual impairment service was involved as well so he, he could have things enlarged at school, all the papers, work, anything he was reading could be enlarged, we borrowed a magnifier that he could use for, for reading books [laughs].
So at the same time as you were trying to go back to your studies you have to adapt yourself because of some of the effects of having the?
Son: The ill, yeah.
Like your short-term memory?
Son: Memory, vision, the tiredness, because -
Mother: He also had diabetes insipidus.
Son: Yeah, I got a type of diabetes, diabetes insipidus which is a, controlled by tablets, but it means you can’t concentrate, you’re, you’re obviously going to the toilet very often, you need to go to the toilet all the time, so. I was having, I was having to deal with that and it was getting like them getting all of the medication used in right, find the right level so I wasn’t having to go to the toilet every five minutes. And that was another problem when I was going to school was being able to go to the toilets because obviously in a high school you get a lot of people who hang about in toilets smoking so a lot of the time the toilets would be locked and you’d have to get a key for the toilet which caused more problems sometimes getting hold of one of these keys.
Reactions from teachers and the school
Most teenagers found their schools understanding during their illness, and some certainly experienced more relaxed school rules in order to meet their educational needs during treatment. For instance, the young person with cancer was allowed to sign themselves off and go home if they felt too tired to stay at school. Most young people also found their teachers to be particularly supportive. Some teachers even provided extra lessons or coursework to help them catch up with the studies that they missed during their treatment. One young man said that a teacher from his school gave him lifts each day during his illness and treatment (see interview 07).
In another case, a young girl was able to talk with two of her teachers about her cancer experience because both teachers had had cancer too (see interview 12). Not surprisingly, it was sometimes necessary for some young people to drop a subject or course at school and a few of those affected by memory problems were often given extra time when taking exams (see interview 14).
Was determined to do well in her GCSEs and found that schoolwork and art took her mind off her illness.
Was determined to do well in her GCSEs and found that schoolwork and art took her mind off her illness.
He, he took out the, the lump that I found in my neck and it was positive and I had my exams so I kind of went to all my exams whilst having some scans and stuff. I, I do remember coming in late for an exam because I, my scan had overrun and they let me kind of sit in the corner and carry on later than every, anyone else. So my school were really good with that. They were very understanding, they let me come and go as I pleased, they gave me privileges to sign in and out so if I was tired from radiotherapy or anything, they just kind of let me, I could do that, so that kind of responsibility was really, it was really thoughtful because I couldn't have necessarily stayed all day but. So yeah, I kind of did my exams.
Art was helpful, it was just, it was just something to take my mind off it but schoolwork was like that too with my exams. I, I kind of got through those couple of months because, you know, I thought I'd come so far even missing the best part of term, term in the summer between surgery and radiotherapy, I was still, you know, I was still working and it was so close literally two weeks before my exam, I was like, I'm not going to throw it all away for just this. I let my school know, who again were always really, really like thoughtful and kind and asked if there was anything I could do, they could do even. They offered me things like extra time in exams, which I chose not to take because I thought I wasn't really in a different position to anyone else you know. Then my exam boards were made aware of the situation so if I had to miss an exam which thankfully I didn't, they'd, they'd know and maybe take my, my predicted grade or take it into account that I missed the exam because I was somewhere else, but thankfully that didn't happen so.
I kind of, I did my exams and then they turned out really well. My school was really proud, they, they always publish in the newspaper about the exams and they, they wrote a little paragraph about me saying that because I got five A stars and four As at the end of it, so they, they wrote this little thing in the paper saying you know, even with battling cancer she managed to get good marks. So I was, I was chuffed when that came in the paper I was quite proud. I was like, you know 'cos I, I did feel that I worked hard, it did keep me going 'cos I thought, you know, at the time I thought GCSEs were the be all and end all you know [laughs].
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.
Said that his teachers didn't put any pressure on him to do well at school because they were so...
Said that his teachers didn't put any pressure on him to do well at school because they were so...
And I was just let, allowed to basically do. I, I obviously did the work and everything but it was very much no pressure which to be honest in some ways I kind of think has affected me in a negative way now because at that kind of age when you're sort of getting to thirteen or fourteen children start to learn about careers and you know selling themselves and going out and achieving what they want to achieve. And obviously I missed a large portion just through not being in school but that, none of that really applied to me. That, that's the impression I, I got from other people. And more impression that I kind of imposed on myself was that I kept on hearing that I'd done so well in the fact that I was still here and that was all fine and it was great. And it was not until I finished university about two and a half years ago. And I went out and I got, I got a regular type of job that all students get now when they get, just to get by. And I kind of feel now as if I've missed out on that kind of. I haven't got that attitude that lots of other people have that I need to go out and be the best I can be and sell myself. Because part of me kind of feels like I will never achieve anything as, as, unbelievably amazing as actually still being here because of the fact, I was made to, I was, learnt in hindsight and from what lots of other people have told me that they, that they, what they learnt when I was having the treatment or when I was ill is that I basically wasn't going to survive. And it was very much, and when I came back it was, there was never anyone really pushing me to sort of in school. I'm not blaming anyone for it. It was inevitable that I would do the same thing but I kind of feel a slightly less, less well equipped when I, immediately after I graduated and going into university. I didn't feel as if I was on mentally and emotionally on a level playing field in terms of getting out there and getting, you know just pushing myself because it was always quite free and easy in school in the key times when I was, you know, doing my exams. I got good enough grades but it was never. I never felt any, any pressure at all because everyone was so happy that I was there and just this whole doing it, you know. And just they were so proud of me for be still doing that but it was, it was good in that sense but you know your life is extremely different, different from being in school as it is. But it's even, was even more different for me because you know there was no pressure at all. And I went on. I got, got good enough grades and I did, yeah I did quite well.
Not all young people and their families found their schools to be as helpful or supportive. A young man who had spent several months in hospital found that his school had not been kept up to date about his cancer treatment. As a result, his family received a visit from a welfare officer because his absences were taken as truancy (see interview 14). In another instance, a young cancer patient and her mother both found the head teacher to be quite unsympathetic when she started being bullied. This resulted in the girl losing her self-confidence and failing academically. She had to be moved to a school for people with special needs that resulted in her not getting the qualifications that she needed to be accepted into university.
Said she was bullied at school but the head teacher denied there was a problem.
Said she was bullied at school but the head teacher denied there was a problem.
How old were you when you when you started to be bullied and changed schools?
I changed schools at the age of I think it was fifteen.
Okay and for how long did the bullying occur or went on at that school?
It was about a year I came I was very, very lucky to w, well not win, to have an opportunity to go with, with a charity to Florida my Mum nominated me with some other friends to go to Florida and that's when the-the extent of the bullying started 'cos it was flashed all over the papers that I was, you know, I was the, the lucky, there was three of us going, all from the same year, year group as me, and we were they decided that, you know, to get some publicity in and, and it's when the publicity went in that the bullying really started to take effect.
Moving schools meant she missed out on getting the qualifications she needed to go to University.
Moving schools meant she missed out on getting the qualifications she needed to go to University.
I really wanted to do my GCSEs and I wanted, as I say, I wanted to go to college, I wanted to go to University but unfortunately because I couldn't do what I wanted to do at college 'cos I didn't have the GCSE grades I didn't go to University, which I mean I, I look now, I, I don't regret not going to University but I would have I would have liked just to.
You can still go?
Yes [laughs], I look at my, I look at my other friends they've all got their BAs and [laughs] 2'1s [laughs], but as I say yeah, there I think there might be still time, or there should be still time for me to go so it's just picking the best park, 'cos at the minute I'm enjoying my life as such, it's, it's finally got back on track and I am enjoying it so [laughs], yeah.
Says that the 'catch up' lessons his school organised were unhelpful because although he was...
Says that the 'catch up' lessons his school organised were unhelpful because although he was...
It went down the drain. Because I was going through Year 8 and I was, I was doing well and, and then I was off for the whole of the Intensive year. So I lost all of Year 8 or most of Year 8 and the beginning of Year 9. And then when I was well enough I started to go back into school and I had home tutors when I wasn't well enough during the intensive treatment. But the schools don't really know how to react to it. And are very, very unhelpful in my experience. They, they didn't send home much work. My home tutors actually had to chase it. Then when I got back into school I was supposed to have catch-up lessons. So I was supposed to have someone come in with some work and help me do the work. Whereas basically they set up a drop off session so basically someone came in, gave me the work and said 'Right do it' which isn't very helpful because I didn't know how to do the work and what it was. So I was. That didn't help at all. So my Mum had to go into school and you know, kind of say [huh], 'What are you doing?' And they had a huge, a big meeting about it. And now after a, after a year or so it's been sorted out so that I have a guaranteed place in the sixth form. And that they will try, they've, they've. I only do four subjects now instead of doing all of them. My, my main areas. And I have loads of free periods so in those free periods I catch up on lessons that I've missed due to illness and stuff in the areas that I've chosen. So it's starting to pick up now but it's taken a very long time to, to get to reasonable level.
How long would you say?
About two, two and three quarter years. So nearly the whole of my treatment say.
You were attending a school, during your sort of low intensity?
Yeah during maintenance. I was there as much as I could be but sometimes you are too tired or you have an infection or you have an illness so it hits you back so you can't be in but I was there as much as I could. In Year 9 I had, I was there half of the time and half not. Then in Year 10 I had a really bad patch so I wasn't there much at all, less than half. And now in Year 11 I've had yet another batch of bad luck so I haven't been there much at all. But you can't help it when you have an illness you're ill.
Some young people with cancer felt that their treatment impacted their career choices and prospects, and a few even decided not to return to school. As a result, some faced difficulties when trying to build a career and others were unable to take full time or paid employment. However, some employers were willing to be flexible: for example, a young man who had been a welder was able to continue working full time in the same company with some adjustments, such as doing less heavy work. In another case, a person with cancer felt supported by his boss even though he had only just started his new job when he had been diagnosed.
Says that he won't be able to do his normal work as a welder for sometime but he is happy to be...
Says that he won't be able to do his normal work as a welder for sometime but he is happy to be...
So you left hospital in early September and you are already back at work?
Yeah, I started back 1st October which was three weeks. I was supposed to wait for six, but 'cos I'd, did what she said, do quite a bit of the housework, if you feel tired after doing that then don't return to work till your body can keep up with itself. And my body was recovering quite well after I'd done a 12 hour shift I still had enough energy to dance my way [laughs].
You are doing a 12-hour shift?
Yeah.
Ok, what do you do?
I'm a, well they put us a line operative but more of a machine minder all the time. But at the moment I'm only on light duties till I'm 100 per cent with my bones or what have you.
And how do you feel then, do you feel ok?
Yeah I feel fine, its, the other people at work feel more knackered than me [laughs].
Yeah, that is amazing. Do you think it's something to do with your sort of frame of mind because you seem to be kind of positive and?
Yeah I have to say it's just being positive and always looking at there's always light at the end of the tunnel and you, you know, just laugh, as I say, laughter's the best medicine.
Says that her career as a dancer has been affected by the scars that resulted from her surgery.
Says that her career as a dancer has been affected by the scars that resulted from her surgery.
I think it will have a long term effect simply because I know a few months ago when I started looking for work, I'd been on the internet because a lot of the jobs come up, I can keep an eye on who wants, employers. And it's untrue the amount of employers that stipulates 'no bodily scars, no illnesses' and, and it's, it's, you know, it's hard. I would like to go sort of and travel and work within dance abroad, there's cruise ships for example, but I'm not able to get insurance. And it's thing like that, that pull you back all the time, you're constantly reminded that you're different and that's, that's really the hardest bit.
I mean I am trying, I'm going, trying to use it as a positive affect as well, I would eventually like to do a masters degree in dance therapy and I would like to work within oncology which perhaps before I'd never have thought about, so that would be nice. But as far as dancing is concerned, I'm, dancers lives are short anyway, but it's an added affect, the fact that I've got this body scar as well. And obviously it's hard to get work when you're constantly at the hospital, they won't take you on, I can't go away for too long, I can't go away for long periods of time because I'm needed back here.
Did not finish his A levels and finds it difficult to decide what to do as a career.
Did not finish his A levels and finds it difficult to decide what to do as a career.
And what was the reason that they give you?
Oh they said, no, we're not going to have, we can't have, we can't have you. There's too much chance of recurrence, and if they're putting millions into your training then it's fair enough, I suppose. But you know, it was really harsh. When you put that much into it, and it's something you really want to do, and you know you're good enough, other than that, other than just because of what you've had in the past, and then that's all they see, So it's kind of hard, but you know, I got given advice on it, because it's so specific to the job I suppose. Something I have noticed on CVs, you do get asked about your health, and you do have to put it down that you've had that, and it does affect it I think. So'
So do you think that young people like you could be discriminated against when they apply for specific jobs because of the cancer experience?
As much as people will tell you otherwise, I think it's - I think so. I really do [laughs].
There's a need for awareness about it?
Yeah. I think each case is so specific, with this type of illness. Every case has its own, you know, positives, in a way. Whether it's likely or less likely to come back or not.
But I think if you get a particularly aggressive one, and they know that, or even if the word is mentioned, then I think something does trigger in their minds when you go for an interview, or put it on your CV, although they wouldn't say it. They've got to be thinking about it, I think. So especially if it is this kind of recent, only a couple of years ago. They don't know how it's going, so, but. It's just one of those things, I think [laughs].
Recalls that his boss was very supportive even though he had only just started a new job when he...
Recalls that his boss was very supportive even though he had only just started a new job when he...
Work were fantastic about it, I'd only been made permanent a month before and I had to go off which they're only supposed to pay, they're not even supposed to pay sick pay when you're doing your probational period anyway which is 3 months but they did give it me anyway. I think it would've been a little bit harsh to be fair if they hadn't paid me for what you know I was off for.
Were you worried about work?
Yeah I was worried that I was going to lose my job. I know it's silly. I look back now and the people I work with, my boss was superb, my boss above him was superb. They were fantastic, I'd keep in touch just to let them know what was happening. Each step you know I've been through with you today I would let them know what was happening so they were up to date.
In some cases, people changed their career plans following their cancer experience, and sometimes included plans to help other young people with cancer. For example, one girl talked of doing a Master’s degree in dance therapy that she could then use in post-cancer therapy work (see interview 15); a young man chose to study science A-levels with the aim of going into the medical field (see interview 18); and another studied pharmacy (see interview 09). Young people also started working in cancer charities as volunteers or on a part-time basis.
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