Cancer (young people)
Impact on family
"This is my personal opinion, but I think it’s actually harder on the families than it is on the person suffering the illness" (Interview 18).
Having a person with cancer in the family changes the way that members of the family connect and communicate with each another. It can have a big effect on the lives of everyone concerned including grandparents, parents, brothers and sisters. Here young people talk about the impact that their illness and treatment had on family members and how their cancer changed family relationships.
Parents are naturally shocked and upset when their son or daughter is diagnosed with a life-threatening illness such as a cancer. As a result they can feel angry and powerless and say that they would much rather have the cancer themselves than see their child with the disease. Parents may do everything they possibly can for their son or daughter as a way of making up for what has happened. The mother of one young woman we spoke to was also diagnosed with cancer. This helped her to understand how helpless it can feel when a loved one is diagnosed with cancer. They became even closer as a result of both having had the same experience.
Just as she was finishing treatment her mother was also diagnosed with ovarian cancer. She thinks...
Just as she was finishing treatment her mother was also diagnosed with ovarian cancer. She thinks...
So you went, you were coming out of Chemotherapy?
Yeah.
And your Mother was diagnosed?
Yeah, yeah so and she had surgery herself as well so it sort of [pause] it, it made it a lot tougher, and I think, you know, during Chemo there was so much to do when I was so busy worrying about side-effects and taking pills and potions to combat that, and popping to the hospital and that sort of thing, you feel very safe 'cos you're really looked after and it's like you're in this sort of bubble of the hospital, you can ring up any time and, you know, there's people there that are experts [laughs] and, you know, they're looking after you and they're worrying about you, and then you finish your Chemo and a couple of months down the line it's like, 'Oo-oo' [laughs]. 'Panic' [laughs].
It, I, it was very tough, really tough I just found it, oh I just felt so helpless and I just really wanted to be able to help but I think, I mean we're very lucky, we're very close and there's, there's, you know, we'd be happy to chat about anything and, we're, we were able to share our feelings and I mean I was immensely lucky to have her around during all of my treatment because she's a Nurse and she's a Specialist in Gynaecological Cancer so she really knew everything and I'd sort of be like, 'Mum what's this? What am I taking? What are these pills? What?' [Laughs], you know, [laughs] even down to simple things as when I was having my surgery, when I'd have my surgery she was there, and she stayed with me and, you know, she could pass me the sick bowl and [laughs] hold my hand, you know? So I think, you know, we have a strong relationship anyway, but then when she was ill it was sort of, you know, it made it even stronger because we were able to share, share things [laughs] yeah.
I think my Dad's gone bit balder [laughs] and probably a bit greyer [laughs] yeah I think because my brother lives in Scotland he, I think, although obviously it must have been tough for him, he's and he's a very kind of, stiff upper lip character so, [laughs] so he, he sort of, he was less involved than Dad. And Dad was there through, through thick and thin, you know, through all the really tough times, and hormone changes and the menopausal hot flushes [laughs], and all sorts so I think he's had, I think he's probably had the hardest time out of everyone in fact, because he's had to watch two people he really cares about go through it. So it's I think it was really hard for him and, you know, 'cos he doesn't come from the medical profession he's sort of, whereas Mum did, it was sort of like he wanted everything explained to him and sometimes people would just maybe assume that, that he'd know or we'd know, because, because of what Mum did but yeah, but I think he's sort of, I also think he feels pretty lucky that, that, that we've both come out okay the other side so yeah but I think he found it very stressful.
Some parents tended to 'bottle up' their emotions as their own particular way of coping. Those who were badly affected were prescribed anti-depressants to help them through. One 21-year-old man had a mother who was already depressed even before he was diagnosed with leukaemia.
His mother had depression so when he was diagnosed with leukaemia he tried to prevent his family from finding out.
His mother had depression so when he was diagnosed with leukaemia he tried to prevent his family from finding out.
And what about with your parents? Did you talk?
My parents, what it is my Mum suffers from depression. When I was diagnosed with leukaemia I was in the hospital. I didn't even let my family know that I was in the hospital. For two weeks they didn't, they were, they were unaware. I didn't tell them nothing. I thought to myself if they find out they are going to get more depressed. She's going to get more stressed out so I didn't say nothing. I just kept it to myself. I thought what I can do is I can get my mates to say that I'm away down south or something like at my cousins. Would be back up in a couple of months or something because obviously I, I'd realised that they were going to release for two weeks so then I'll go back then but. The treatment was intensive. I didn't realise it was going to take a lot out of me as well. So I knew that if I go back like that my physical appearance, she'll be wondering what's going on.
What happened is, my mate's mum she came over to our house just to, you know, see how's, how's my Mum coping with this news? But she's realised that Mum was unaware so she didn't say anything but on her way out she said to my sister, 'Are you aware that your brother's got leukaemia? He's in hospital.' And my sister was shocked. And then she, she phoned and she got a telephone number to the hospital and my room and, and then she phoned, she phoned me up and said to me, 'Why didn't you tell us' and that? And I said, 'I didn't want you to worry' and she wanted to tell our Mum. I says, 'Don't tell Mum, don't tell Mum.' And then in the end she told Mum and then mum came here and she was heavy crying and that.
But how has she coped since?
She's coping well now. But it's kind of hard on her as well watching her son going through leukaemia.
And your father how, how has your father coped?
My Father was in Kashmir. He, he was there for two years and when he heard the news he's, he's come back. So he's here basically for a couple of months, probably round, not a couple of months probably round about eight months or something, until my treatment's over before he decides to go back.
And your mother lives here with you and your sister?
Yeah I've got two older brothers, no one older brother, one younger brother so we all live together.
And how have you, have they coped your siblings?
They were all very upset at first when they heard the news but they've been very supportive.
Says that has to reassure his mother that he will not relapse. Sometimes this means that he does...
Says that has to reassure his mother that he will not relapse. Sometimes this means that he does...
She's still apprehensive?
Yeah.
Were you able to talk to your family about how you were feeling, about your worries?
Yeah, I think more or less. I still felt that I had to be aware that whatever I said, if I said something that worried them I had to make sure I didn't worry them sort of thing. If I, if I felt really, really poorly, I mean if I'd get sort of a fluey thing or me bones start aching you know, I think 'Oh this feels just like it did before I was diagnosed,' but you've got to be aware that you don't say that to them otherwise they might start worrying that it is. But quite often I find that I have normal symptoms and it'll just be one of those things and you'll get really worried thinking that there's something wrong, that it's coming back or something like that.
Describes how her illness has affected her family. Her mother wants to know everything but her...
Describes how her illness has affected her family. Her mother wants to know everything but her...
My Mum. She seems to have been the best, it's odd how different people deal with it around you. My Mum always wants to, she's very interested obviously, but she wants to know everything, she's always saying 'Well what does that mean?' And she makes it a point of visiting the hospital every time I go, she has to be there whether, whether she has to rearrange things or, she has to be there. If, even if it's just to take a test up she, she needs to be with me all the time. And it's been hard, it's, it's really hit my Mum very, very hard and that's, that's been probably more upsetting to me, watching her see me being poorly than me actually feeling poorly because obviously I've not, not been poorly with it. But we talk about it a heck of a lot, and I think talking it over has helped her come to terms with it a little bit more, from the information I've found out, I've told her and related back to it, and it sort of settles her mind knowing how I'm feeling all the time.
I have some, I have two sisters as well, and my younger sister has not dealt with it very well, she's not been able to talk to me about it, she doesn't, not that she doesn't care, but she's, she's not able to talk to me about it, she find it very hard. She's not been up to the Hospital where, up to the [name] Hospital, she's not able to bring herself up there because I think she probably, she associates it with death and it's not like that, it's, you know, it's hard to explain to her that it's not like that.
Okay, so in a way not discussing your sort of concerns or fears with your family is sort of a way of protecting them?
Definitely. You do, because you can see how much it's hurting them, you know, you're seeing them go through this, I don't know sort of crumble before if you know what I mean, as soon as you're told the whole, your whole world's turned upside down, it's not just your own, it's your whole family's and you know, you can see how much it affects them and it's. I found that more upsetting, whether it's because I, my brain sort of choice not to believe I had cancer, I don't know, but it's, you know, to see them go through that and you try and protect them from it, because you know, what, what they don't, what they don't need to know they don't need, you know what I mean? I don't mean that you, you keep things from them when you know, you've got big fears, but you perhaps don't think you need to discuss it all, quite as much as you, you perhaps would do, definitely.
Many busy families have to decide which parent will stay in hospital with the young person, and which will carry on working or looking after the rest of the family. Usually it was the mother who stayed within the hospital, and many also gave up work to do so. Brothers and sisters may sometimes have to be looked after by friends or relatives. Fathers often had to continue working and make do with less frequent visits or phone calls. Those who were being treated for cancer who had separated or divorced parents sometimes didn't see their fathers at all while they were ill.
Says that everyone in the family was affected but particularly his mother who had to stop working...
Says that everyone in the family was affected but particularly his mother who had to stop working...
It affected my Mum because she works at home and I was at home most of the time, she stopped working for all the time I was having radiotherapy so she could take me to the hospital and be there.
My Dad carried on all, as normal but he still went to work but like he phoned us regularly to see if I was okay and what we were doing. And my brother and sister went to school but they kept coming home and seeing if I was okay.
Your brother and sister?
Yeah.
Okay, they were worried about you?
Yeah.
Did they ask questions?
Yeah they said, 'What's it like?' 'Why, why have you lost your hair?' You know like they were really nice because my brother's usually grumpy and he doesn't, we fight like now but he was really kind and he helped me, he brought me drinks if I wanted a drink. He changed.
Parents tend to cope with difficult situations by taking on different roles and responsibilities. Mothers were often the 'nurturers’, making sure that they could be around during treatment and follow up appointments. Fathers tended to be more practical and find out as much information about the cancer as they possible could. One young woman said that her father learned to clean her intravenous Hickman line and gave her some of the injections that she needed. A young man said that his dad had given up smoking following the cancer diagnosis but he didn't think his father really understood what he was going through with his cancer treatment.
Her mother, father and sister all helped her during her illness but in very different ways.
Her mother, father and sister all helped her during her illness but in very different ways.
My Sister found it very hard to deal with, and I didn't really talk to her about being ill at all. She used to spend a lot of time with me, she used to give me a lot of hand massages, I used to really like having hand massages. And I think she was more sort of someone who just used to come and sit with me and be company. But she was going through a lot at the time as well. I mean, she was sort of 17, 18, for most of the time that I was ill, and that's quite a difficult stage in your life anyway, so I didn't really want to burden her with the emotional side of what was happening, so we'd just chat about what was going on for her at school, and she'd tell me about her 'A' level studies, and I'd say, 'Oh, you're doing geography? Oh yeah, I did that', and help her out with her work, and I just tried to be the older sister to her, really, and I think she tried to just be understanding if I needed to talk. And she had a hard deal, because if she ever had a cold, she couldn't come in the same side of the house as me, and' and the attention that she got was very dependent on what I needed, so I always felt very guilty that I was taking it away from her, so I didn't really want to talk to her about being ill that much, I would try and talk to her about her. So from that perspective, she, she sort of' I think I experienced quite a lot of being 18, through her, because she would come and tell me about who she'd kissed at school, or that kind of' this sixth form party that she'd been to, which' I mean, I went to a couple of sixth form parties, but not really, because I sort of got pulled out at that stage, so I experienced a lot through her, I think. And so that was her role. She was my 'being 18 guru' [laughs] because I never got to be 18 really [laughs].
Many young people said that they tried to reassure their family by trying to stay positive throughout their treatment. They didn't want their families to be upset or suffer so they put on a 'brave face' (see ’Coping with cancer’). At the same time, they also realised that members of their family were trying hard to be positive for their sakes during the treatment. Quite naturally and very thoughtfully, everyone was trying to protect everyone else. However, in these situations, it helps to talk about feelings. If members of the family can't talk to each another, it may be worth talking to a trusted friend or relative outside of the immediate family.
He thinks that his positive attitude has helped his parents and grandmother to cope with the fact...
He thinks that his positive attitude has helped his parents and grandmother to cope with the fact...
And what about your mum, dad, how have they reacted? How they have coped?
Well, well from what I know now they were of course extremely worried by the, by the whole thing, but we, we almost pretty much hid that side of things from each other that we were really quite anxious about it and, sorted it into sort of my pragmatic view on the thing. That you know, just it was only matter of having so many treatments and it wasn't a great deal to get worried, worried about. And you know, generally, they've been, they've been really, really good about it. And they, and they've coped very well. But I've still, but I've still made sure that I've remained positive for them and I think that's, was, helped a great deal. And also they are quite strong people.
Said that his grandparents and friends frequently visited him in hospital and they used to tease...
Said that his grandparents and friends frequently visited him in hospital and they used to tease...
Family were great. Yeah, they couldn't have done any more. They were always in hospital with me, even my sister. She's busy at Uni and working but she always made the time to be there, so that was great. You know, grandparents came in, because they live right next to the hospital so that was good. They'd always be down there, always taking the mick out of me [laughs]. Yeah it was good, I think that was the best way for me to get through it. Nobody gives you symp - well, they do give you sympathy but they try not to let you see [laughs], just take the mick and...
So they were keeping positive for you?
Yeah, definitely. I think so. And your friends. You've got to make sure you keep your friends. I just made sure I had my close friends there. They came into hospital when it was there, so you know, just cheer you up that little bit, and it all makes a difference. It just makes it less bad [laughs]. More, you know, endurable, so.
So would you say that to have people staying positive and trying to cheer you up is a good thing?
Yeah, I think so. Obviously when you get bad news then it is hard, for everyone to stay positive, but, the people around you, it's just natural for them to do that. They don't want you to see that they're worried or anything, although you do, but as much as they can they'll try to make you feel as good as you can. And it's probably the same on your part as well. If you do feel a bit down - well I didn't particularly let people know. You just think, "Oh, gutted", but you know if it's your parents, you don't want to see them hurt because of you, even though they're going to be. They don't want to see their kid getting sick or ill, so you just try to keep as bright as you can. Or I did, so.
For your parents?
Yeah, for everyone that saw me, you know. Always put on a brave face.
So, in a way it's kind of protecting them?
Yeah, I think, yeah. Yeah probably just me that does that [laughs] but not at all, yeah, so that again was just natural. You don't want to see your parents upset or anything, or your family, your sister, so, you know, just put a brave face on it, always a smile and it just makes them feel a bit better about it as well.
Young people found that the support, love and attention they got from their families was priceless. They felt very reassured to have this stable force there supporting them. Young people from one parent family backgrounds particularly stressed the support and strong bond they have with their mothers.
Has become much closer to his Mum but his Dad (who does not live with them and has given up...
Has become much closer to his Mum but his Dad (who does not live with them and has given up...
But my Dad stopped smoking because, because of it. He was scared and that it would affect me and affect him so he stopped that. And, but he, he doesn't understand because he doesn't live with me so he doesn't understand several things. So when I'm on dexamethazone if I go up there and I am, I'm depressed and angry and stuff he tells me off because I'm being unfair to the people up there. And that annoys me because he doesn't understand what I'm going through so he doesn't realise that, you know, I'm not doing it because I want to. I am doing it because I just do it, you can't help it. But he, he doesn't understand. He's in the mindset that if you don't understand something you don't worry about it and he doesn't want to worry about it so he doesn't understand it.
His father did not visit him but he has felt the support of many family members in the UK and...
His father did not visit him but he has felt the support of many family members in the UK and...
And how did it affect the family - you becoming ill?
Well, it kind of brought ourselves together, because there was lots going on at home at the same time, with my dad, kind of thing, and now he's moved out, but at the time, there was a lot of, like, conflict in the house, and I think, me having cancer, gave a new sort of, new light to everything, and rather than everyone been so, they had more stress from me being ill, but I thought it was kind of a good thing, because it pulled everyone together, made everyone realise that it's more important than just arguing and stuff. And everyone sort of, sort of' I don't know, looked at everything in a different way. It changed things the way they were.
So, more positive?
Yeah. It was. I found it was more positive than it was negative, having cancer.
And how did you feel? How did you feel with the support that your family gave you?
It was good. It was, I felt, I felt at least there's someone there. Well, my family are really religious and stuff, and everyone in my, like all the ladies and stuff, they're always doing fasts and everything, and my aunties, all of them did, like a fast for me, and they carry out, like, ten day fasts, or two month fasts or whatever, and my mum did some, my grandma did some, my auntie did some. I've got relatives in India who did them as well, when they found out about it. And everyone was really supportive to me. They were, like, really worried at first, and then they realised how, that I was getting along with it okay and everything, and give them hope as well, and they prayed for me all the time, and, and was really nice about it. I felt better.
So part of the religious rite was fasting?
Yeah. Sort of thing. You fast, like, there's always fasting and stuff going on, like for, like, different, on a Tuesdays or Mondays or Sundays, there's always like a day fast for different purpose, but one of my aunties, she did, like, a two-week fast for me, for the purpose of me to get better. So that was really nice. And Mum did it every, I think it was every Saturday, or every Tuesday or whatever, and it was probably good to show that they cared.
Which religion?
Hinduism.
Brothers and sisters can find it especially difficult having a sibling with cancer, and this can be worse the younger they are. Even very young children are often aware that cancer is a life threatening illness so it's probably best for parents to talk to them honestly about what is happening and answer their questions as best they can. Some brothers and sisters were very upset by the changes made to family routine during the treatment period, especially if it was all happening far away from home and their mother had to be away, looking after the sibling with cancer. Brothers and sisters who had to stay with friends, a child minder or relatives could sometimes feel very left out. The young person with the cancer could often be very aware of this and felt guilty because they were taking their parents’ attention away from the rest of their family. A young man who was only 14 when his brother was diagnosed with Leukaemia started to look after his other younger brother and his sister when his parents were at the hospital.
Feels a bit guilty because when he relapsed his parents concentrated on him and he thinks that...
Feels a bit guilty because when he relapsed his parents concentrated on him and he thinks that...
Those feelings were present the first time or the second time that you were diagnosed?
Particularly the second time because for a long time up to the run up of my, my diagnosis the second time I was really ill anyway because the second time I think I let it, I let it go too far before thinking that it could be cancer again. So I spent sort of a month and a half, two months in absolute pain with my parents sort of you know helping me all the time even though I hadn't been diagnosed. So the period of time for which I was hogging the attention the second time was, was longer than the first time.
Thinks that her 7-year-old sister had a hard time because their mother spent most weeks at the...
Thinks that her 7-year-old sister had a hard time because their mother spent most weeks at the...
How old is she?
She's ten now, she's nearly eleven actually now so she must have been seven, something like that.
Other siblings?
Yeah, yeah, I got two brothers as well and they couldn't really cope with it, I mean, I think they both came to see me once in hospital, and I know now that they feel really guilty about it and I've spoken to them and they've both said that they just couldn't handle it, they couldn't handle seeing me like that, seeing me so ill [sniffs] which I understood 'cause, I don't know how I'd react if one of my brothers or sisters was like that, but I dunno.
They were younger also?
No, one's younger, he's eighteen now, and one's twenty-four.
Okay.
So, my Dad, my Dad would come up and stay with me on weekends, so give my Mum a break and he'd, because he came with me to have my fertility operation, and then he came up halfway through, when I was in intensive care, he came up for the rest of the time there, so him and Mum would sort of share it, but he was a teacher as well so [sniffs], it was quite disrupting on both of them I think, both of their jobs.
Okay.
Yeah.
So and, have you talked to your, your little sister now?
Yeah, I have spoken to her yeah, she speaks to me as well.
Yeah?
She's, I'm, when I told her that I was, all clear she was really, really happy and, yeah, I mean we're not as close as we used to be, I have, I think that's, because when I was ill I was pushing her away and because I just didn't want anybody near me and I felt really bad for doing that, but I mean we are still close but not as close but yeah. I haven't really spoken to her in-depth about it but she does understand, I think.
She knows that her sister had Cancer, and she tells her friends that, but I think her friends are so young they don't understand themselves so.
Suggests that his brother and sister had less attention because his parents were so preoccupied with him and his illness.
Suggests that his brother and sister had less attention because his parents were so preoccupied with him and his illness.
What was the whole impact of this on your family?
It affected my family a lot. Probably as much as it affected me. I've got a younger brother and sister who were pretty much put by the wayside and moved between family friends and other members of the family whilst I was in. And obviously my parents' focus was completely on me because I was so ill and so they, they weren't ignored but they were put aside. And my parents would get back from the hospital every evening and say "Hello, how was your day?" and eat a meal and then go straight to bed because they were coming straight back the next day. So it did affect everyone a lot.
When his brother was taken seriously ill to hospital he talked to his other brother and sister so...
When his brother was taken seriously ill to hospital he talked to his other brother and sister so...
To your sisters?
Yeah, brother and sister. Trying to help them understand, which in some ways was good for them, but I think for me that was probably the worst thing that I could have done for myself, because I needed time to sort of think about things and try and understand it all myself.
One fourteen-year-old boy, who was the brother of a young cancer patient, talked to his headteacher when his brother was in hospital. He said he would have liked to have talked more to someone who understood how he was feeling at the time.
Said that the only person he talked to during the time his brother was in hospital was his...
Said that the only person he talked to during the time his brother was in hospital was his...
Did you talk to someone about how you were feeling at that time?
At the time I was, as it was all so quick, I didn't really get much chance. I mean I was trying to look after my brother and sister. Try and stop them from running around the ward causing havoc [laughs] but the headmistress came in from my school and I managed to talk to her, a bit [laughs] well as much as you [laughter].
Talk to the headmistress [laughing].
Right, yeah [laughing] but...
Was she understanding?
Yeah, I, I don't remember much about what I said to her [laughing] but I think it, it was probably good that I was able to talk to someone. But in some, looking back, I wish I'd been able to talk to someone else who'd had a brother or sister who had cancer. Whether they were still alive or had got better or, or had died whatever. Just being able to talk to someone and sort of thing, well why do I want to punch at, punch things and hit things and scream? Am I weird for wanting to do that. I, I now know that I'm not weird for wanting to do that [laughs] and that's quite normal, in fact it was probably quite sedate that I just wanted to do it and didn't start punching everything in sight [laughs]. Although I, I think my, at, at night when we eventually went home each night, I'm, I'm sure the teddy I cuddled up to got quite a battering [laughs] but those nights I was, I, I, I don't think I got much sleep. I was constantly thinking about him, just trying to rack my brains if there was anything I'd heard that I could do or, something they could try.
Sometimes brothers and sisters suddenly became much kinder, nicer and more caring than usual - though this didn’t always last long after their sibling’s cancer treatment had stopped! Siblings also sometimes admitted that they had found it difficult visiting their brother or sister in hospital because they looked so ill and so different.
His mother explains that the diary she wrote for her son in intensive care was also useful for his brother, who found the illness hard to accept.
His mother explains that the diary she wrote for her son in intensive care was also useful for his brother, who found the illness hard to accept.
I was very glad I wrote the diary and it also came in very handy for 's younger brother who found it very difficult to accept a) the illness and b) the ups and downs, the sort of crisis we were going through, especially as he was 40 miles away living with my sister at the time. He, he felt very detached, part of him wanted to be there, part of him wanted it all to go away because he was only 15 at the time. Yes, so that, at that stage he still wasn't sure what was going on and was sort of more like avoiding it rather than getting too upset.
The diary was important for [son] as well, because when he began to accept what had happened he came down [cough] to the first hospital and stayed with me for the weekend and he sort of brought his rugby video and his bottle of drink and his rugby magazine and sat in front of the television watching, sort of almost ignoring what [son] was doing, which I think was sleeping most of the time. But after a while he sort of looked over at [son] and put his thumb up and said, 'Are you alright, mate?' And [son] actually responded the same way.
Last reviewed December 2017.
Last updated November 2014.
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