Cancer (young people)
Messages to other young people with cancer
We asked those that we interviewed what messages or advice they would give to other young people who were newly diagnosed with cancer and facing treatment. Although having cancer can change your life, many pointed out that (perhaps not surprisingly) it’s not always all bad. Those we interviewed said they met new, supportive, helpful and generally nice people, had some positive experiences, and frequently said they came out of it all feeling a stronger person. Several people said that trying to stay positive made them feel better. If a person can remain upbeat, it also makes it easier for friends and family to cope. However, there will also be times when they feel scared and desperate, and they should always be aware that they can talk to others about these feelings. Here are some of the other general observations about what people found helpful:
- Don’t lose hope: most cancers are treatable, and you just have to live through having it treated.
- Ask for information if you want it: being well informed and learning about what’s going to happen can help you feel in control.
- Don’t worry that you may behave differently and sometimes not too cleverly when you are scared, as it happens to everyone.
- Things can get scary really quickly, but if you can, it is best to do what the doctors advise.
- Try and find someone you are at ease talking about your inner feelings with: it's not always easy but it’s very much worth doing.
- Try to understand how hard it may be for some of your friends and family to know how to respond to you having cancer: they may need a bit of help with this!
- If you sometimes feel that you’re being selfish, don’t worry too much, as your friends and family will understand.
- Focus on what is important and try not to let your worries ruin all of your experiences.
- Try to find a way of coping that works for you (for example, using humour, talking to lots of people, being positive, etc.).
Advises others not to give up and says that cancer can have a positive influence on your life.
Advises others not to give up and says that cancer can have a positive influence on your life.
Well I'm looking forward to September going to university. One day even maybe a doctor, which has been, which was a reality or had, which I'd really. I'd really like to be a doctor eventually. My interest in medicine comes from having Hodgkin's. I've just had my A level results last summer and I was really, really pleased with them. So I'm looking to the future.
It is a scary experience but you have to do what the doctors advise.
It is a scary experience but you have to do what the doctors advise.
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.
Says that you have to try to stay positive and feels that the experience of having cancer has...
Says that you have to try to stay positive and feels that the experience of having cancer has...
And just acknowledge that it is hard but that other people are going through it too and that there are other people that you can talk to. Talk to your friends, talk to family, talk to the doctors because they've seen so many people who've been through the same thing, and talk to patients that are better not just ones that are ill. And don't feel different or stupid because you're scared because it is scary but stay positive because life goes on afterwards and it's just so important to focus on that.
Oh, and to enjoy the new perspective it brings to your life. Enjoy that it makes you look at really normal things and think 'Gosh this is brilliant!' and just the feelings of just loving everyday life that you gain from it from having had a scary experience.
And so yes stay positive but acknowledge that it's scary as well I think.
(The text has been altered in accordance with the wishes of Interview 13.)
Stay positive and after hearing the diagnosis, talk about your feeling with family and friends and tell doctors how you are responding to your treatment.
Stay positive and after hearing the diagnosis, talk about your feeling with family and friends and tell doctors how you are responding to your treatment.
For those who've just been diagnosed I think it's important to find out about what you've got but not too much in the way that the fact you don't want to go, start looking at things before you're ready to absorb information. I think it's important when you're first diagnosed to take some time out to talk it over with friends and family and people who are close to you, just purely about feelings. How you're feeling and your stance, even before you know what's available, just kind of how you think you're going to want to tackle the problem. I think that's kind of important, 'cos as soon as you're grounded and you've accepted that that's your diagnosis, you can then start looking for information on what you can do, and talking to your doctor's always a good one, or your nurse might be easier, they're more readily available. Or looking on like this website to find out more information about people who have had similar experiences. I mean if you talk to whoever the nurse present is, I don't know whether it's a CLIC nurse or just a cancer nurse I don't know, they usually have kind of, they can tell you about other patients that you maybe would like to talk to and about holidays as well. I've been put in contact about lots of, lots and lots of holidays and trips. Or you just kind of meet people and you can see people that have had horrific things, often more horrific than what you've been through and they're, you know they're still there and they're still laughing and they've still got friends, life, kids, whatever you know.
And those who are going through treatment I think, the most important thing is to be open. I think you've got to be very honest with yourself about how you're feeling. I think there's nothing wrong with, if you're not reacting very well to something, you have to accept that and make it aware, make doctors aware and, of how you are feeling and responding to treatment because there's no point fooling yourself or fooling someone else saying, 'This anti-sickness is working' if it's not. If it's not working tell them and they're more than happy to, to find something that does work so I think really be honest. Keep a track of things but don't get too obsessed with everything, you know. It's good to keep a record of, if it's relevant like blood count or weight, or, or maybe different medicines, to keep a list of medicines you've been prescribed and why. It's important to ask why, 'cos if a doctor gives you, say take such and such medicine, if you're not quite sure what it is just ask, that's what they're there for. If you say, 'I'm sorry what, what's that meant to be combating?' or 'How is that going to help me?' and then they can give it to you in, in simple kind of non-medicinal terms about, you know, 'Oh this is going to settle your stomach' or 'this is going to stop the pain', 'This is going to make you feel a bit better' this, you know, it's just.
What was helpful during treatment
The young people we interviewed often offered information about how to cope during treatment (particularly with chemotherapy: also see 'Chemotherapy’). A general theme of the advice given was to try not to dread the chemotherapy treatment, but rather to try thinking of it as a treatment that is intended to help. It was also seen as important to look after yourself, including trying to eat healthily, staying as strong and fit as possible and avoiding stress wherever possible. More ideas that young people gave included:
- If you are hurting, talk to a doctor or nurse.
- If the anti-sickness drugs don’t work, ask for another kind.
- It might help to cut your hair short rather than letting it fall out.
- Always remember that the nurses are there for you if you need help.
- Try to keep occupied & find distractions: music, reading, painting, films can all help.
- Remember how great life will be after the treatment has finished and enjoy the new perspective you have.
Provides advice to other young people who had just been diagnosed with cancer and to those who...
Provides advice to other young people who had just been diagnosed with cancer and to those who...
It's hard to talk to people, but there are so many people out there, find someone that you can talk to, because my, in my experience, not talking to people is what made me depressed. Keeping things inside, and me feeling like I was the only one, and I was a freak, was really, really hard, and you're not, there are so many people out there who are exactly the same, going through exactly the same things as you, so whether it's, whether you talk to friends, whether you talk to family, whether you talk to a counsellor, or whether you talk to someone that you get in contact with through a charity, do it, because it really does help. And try and understand how other people react, react to you, as well, because some people are brilliant. Some people react fantastically, are really supportive. Some people don't know how to deal with it, and if they react badly, it doesn't necessarily mean that they feel badly towards you, sometimes it's just that they can't they don't know where they stand, and they don't know quite what they can do to help you, and sometimes they need a bit of a helping hand. Much as it, much as' as much as it's you who's ill, and, therefore, if people should be helping you, they need you to help them along as well. If you don't tell them what's wrong, they can't help you. If you don't try and understand what it's like from the other side, watching a friend or a family member be ill, then you can't help them, and then they can't help you. So really communicate with people, because it does help. And it's hard, but it, it does help a lot.
Advices young people on radiotherapy treatment.
Advices young people on radiotherapy treatment.
What about, what would be your advice to other young people who are going to have radiotherapy?
Mother: Use Aloe Vera.
Daughter: Use Aloe Vera, yeah [laughs]. And, I'm not really sure because I don't think there's anything really that people can say, you've just got to stick with it, put up with it for a couple of times and you just get used to it. It's not, it doesn't hurt it, it is fine, because I was expecting like these massive big rays like shooting through my head and out the other side and stuff, which I thought sounded really scary, but it's not at all. It's quite relaxing actually, you know I fell asleep a few times, [laughs] so it isn't as bad as like what you think, you've just got to put up with it anyway.
Stay positive and find something that would help you go through your treatment.
Stay positive and find something that would help you go through your treatment.
Stay positive find something that will keep you positive like I have music, may be it might be drawing for you, it might be I don't know watching movies, it might be writing a book, I don't know. I know, I know many people that have been through the same kind of thing who wrote journals which got them through it you know. So the main thing I would say would be positive, find something which would help, helps you through, takes your mind off things. Try to consider, I know at the time it's hard to do but try to consider how your parents feel and how your family feel, how other people around you feel and just not, not to give up, not, I know it's not going to be easy, it's not possible to beat it but just not letting it beat you is going to be the biggest thing. And to do that is to stay positive. You know obviously have your down days, you know you can't have a constant run of good days, you obviously from now and again everyone has a down way, whether they're going through chemotherapy or radiotherapy or just not, you know just at work doing normal things you know. So the main thing I'd say just keep positive, look forward, don't, don't look at the situation as it is now or behind what it was, just look forward and keep positive.
What helped after treatment
It was repeatedly stressed how important it was to keep track of how well or ill you are feeling, but not to get obsessed with it. When in remission, you need to be aware of what signs and symptoms of reoccurrence you should look out for and act fast if any do occur, but at the same time, you really, really need to get back to normal life. Young people also said to:
- Tell your doctor if you’re worried about something: they won’t think it’s trivial.
- Keep a list of the side effects of your treatment and the dates on which they occur so as to be able to show it to your doctor.
- Even if the cancer does come back, it doesn’t mean you can’t be cured with further treatment.
- There is a huge and amazing network of charities, doctors and nurses behind you.
Stephen believes people should be as positive as possible and enjoy life and he talks about some of the things he has done since his diagnosis.
Stephen believes people should be as positive as possible and enjoy life and he talks about some of the things he has done since his diagnosis.
Yeah well one of my mottos is the best ways to help myself is to help others, so that’s how I’m spending my time now and as a result I’m pretty, pretty happy with things.
So would you, what sort of message would you pass onto other young people who’ve been given a diagnosis of cancer?
To young people, it’s just to keep on going, and just to be as positive as possible. But it’s important to recognise positivity isn’t being happy and smiley 24:7 ‘cos that’s a bit clichéd and unrealistic. Positivity to me is about making real steps and changes to your life. How you’re going to approach something or what you’re going to actually do with your life and just start thinking about things a bit more, a bit more potently and coherently, so is worrying about X scan result actually going to achieve anything? Or would you be much more productive just totally forgetting about it and just enjoying those couple of weeks leading up to it doing I don’t know whatever you enjoy. Each to their own, but yes to me positivity is about just making actual changes to your life and make a difference. And yeah so just keep on going. Cancer isn’t great, but life can be so you’ve just got to concentrate on that bit, and just enjoy living.
Yeah so I, yeah I’ve had the bucket list which I’ve had a great time with, and I’ve done loads of fun things off the bucket list as well. And yeah I am quite happy, whether I tick another off or not, the main thing I’m concentrating on is the fund raising, so as I say the new target is a million, so I’m going to be pushing hard for that. As well I’ve been doing kind of motivational speaking to schools, to businesses, to health professionals, to all kinds of kind of settings to share my experiences with, with a view to helping and just got lots of exciting projects on at the moment. I’ve got a documentary out soon, I’ve recently released my own new website, Stephensstory.co.uk, recently released an e-book, hopefully I’m going to write a bigger book in the future and yeah just loads going on.
Stephen wrote about his cancer journey to spread as much positivity as possible. He found the response to his website humbling and helpful.
Stephen wrote about his cancer journey to spread as much positivity as possible. He found the response to his website humbling and helpful.
Yeah they’re, since starting Stephen’s Story the support I’ve had has just been absolutely huge, it’s been from inter, it’s been international, for example I’ve had messages from other countries just saying, “Wow, really respect what you’re doing, blah blah, wish you all the best.” Or people sharing their own stories of someone who’s had cancer or anyone or etcetera and it’s just been as I say really helpful, ‘cos it’s just really humbling you know that, that people do actually care but without something like Stephen’s Story all around me and it’s huge reach I wouldn’t be able to notice that. But people do genuinely care and yeah want to help out.
Oh that’s good, they can see, so you look at, do you write something most days?
Yeah, no I try and update as much as I can, so there’s normally an update or two a day. Whether it’s about what I’ve done in the day, whether it’s about an upcoming event, whether it’s just a motivational just thought, or whether it’s just a silly anecdote to try and put as much out there as I can and it’s all just as positive as can be, and again it’s a, the page is just to spread as much positivity as possible.
You mustn't go through life worrying about it and try and be positive. You are not alone doctors,...
You mustn't go through life worrying about it and try and be positive. You are not alone doctors,...
Says that even when the cancer comes back it does not mean that it can't be cured and that there...
Says that even when the cancer comes back it does not mean that it can't be cured and that there...
Yeah I'd say that just because its come back doesn't mean that its incurable, it certainly doesn't mean its incurable and it doesn't necessarily mean that you, you know you, you feel you should worry more either because it, its, its really its sort of the same, its exactly the same as it was the first time and just because the prognosis is maybe lowered by a couple of percent doesn't mean it, it's just statistics, its just figures, it doesn't actually mean a huge, a great deal.
I'd definitely say you know certainly don't worry because worrying is, is the worst thing you can do. Worrying makes you feel, you know down in itself, you know I mean you're feeling bad enough, you're having treatment so it's not as if you need to worry. But no I, I'd just say no there's always light at the end of the tunnel even if you, even if you have got it back a second time or even a third time I don't know what its like to have a third time but, and hopefully I never will but yeah, no just, I really wouldn't you know, I'd advise you not, not to worry particularly about it.
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