I, at first we very and while I was having my Chemotherapy and that sort of thing, I think a couple of months after I finished Chemo I had, I hit very low patch, my Mum herself was diagnosed with an Ovarian, an early stage Ovarian Cancer, so, that was a very, really tough time, because somehow when it’s you it’s easier to deal with than when it somebody you care about and, and if it’s you can work towards getting better, whereas if it’s somebody else it’s, you’re very helpless, so that was a very tough time for me.

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, theres 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 were very lucky, were very close and theres, theres, you know, wed be happy to chat about anything and, were, we were able to share our feelings and I mean I was immensely lucky to have her around during all of my treatment because shes a Nurse and shes 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 Dads 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, hes and hes 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 hes had, I think hes probably had the hardest time out of everyone in fact, because hes 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 hes 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 hed know or wed know, because, because of what Mum did but yeah, but I think hes sort of, I also think he feels pretty lucky that, that, that weve both come out okay the other side so yeah but I think he found it very stressful.

I think that even now if say theres something on the telly about cancer or theres, we hear about a family friend that’s got it or something, shell just turn to me and shell say ‘You’re not having it again,’ or something like that. And you just, you just agree with her and you, you, you support her, because you know that shes, she still feels sort of insecure about what’s going to happen in the future.

Shes 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 theres something wrong, that it’s coming back or something like that.

Who do you talk to when you find it hard?

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, shes very interested obviously, but she wants to know everything, shes 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, shes not been able to talk to me about it, she doesn’t, not that she doesn’t care, but shes, shes not able to talk to me about it, she find it very hard. Shes not been up to the Hospital where, up to the [name] Hospital, shes 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.

What about the impact on the family and the others around you of you having a brain tumour, how did it affect the family?

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.

My Mum was the emotional support, and she was the one that always used to take me to the hospital, apart from’ because, mainly because she was the one that took the time off work, unless she actually couldn’t do it, and then my dad would take me. My Dad sort of dealt with things by being the medical expert. He would read everything he could, he would watch everything that he could, and he learnt to do the GCSF, which meant the community nurse didn’t have to come out. And I also had a Hickman Line, which is a line, it’s about this long, and it’s got two or three cannulas on the end, and it goes under the skin to the neck, and then it goes in down one of the main veins into your heart, and they inject the chemotherapy into that, rather than having to put it in your veins all the time, and I think they did that because, otherwise, my veins would have just collapsed, because they couldn’t have taken that amount of chemicals. So he learnt how to clean them out. And I think that was his way of making himself feel useful, by being the the practical one. So we, he was what I’d talk to about the practical side of things, and Mum was who I talked to about emotional things.

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 wed just chat about what was going on for her at school, and shed 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 shed kissed at school, or that kind of this sixth form party that shed 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].

Well, my Nan isn’t the most well adjusted person. Shes quite, she, shes very neurotic and shes very much a hypochondriac, especially about, especially when it comes to me who shes completely obsessed with [slight laugh]. And, and really although she tried to hide it from me extremely badly shes very concerned about this, you know, anxious. Shes not, shes never showed that shes upset really, but she was, she does get extremely worried about the whole thing and really, and at first my prime concern, sort of my little project was to, was to comfort her and, you know, by, by being strong. Like, that’s the way I’ve, that’s the way I’ve done it, and carrying on as normal. But I still know that shes extremely anxious, anxious about it and she keeps, and she just keeps on saying that, well ‘Every one is one less. About the, about the treatments which isn’t that comforting really, but she keeps on saying it as the only way that she really copes with the whole thing. And it’s just been pushed under really rather than actually solved the problem, with, with her.

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.

And who supported you around that time? Who was your main support?

Family were great. Yeah, they couldn’t have done any more. They were always in hospital with me, even my sister. Shes 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.

Well it’s brought, it’s brought my, me and my Mum much closer. Weve become much closer than we were. I mean we were very close anyway so now were really close. And it’s, it’s been very difficult for both of us so weve kind of shared things to make it easier on the other. But it’s very difficult on parents, it very, it affects them a lot. And it’s very difficult for anyone let alone [hump] a parent because they, you know, you’re, it’s their child and they’re very worried and you know you don’t want to lose them and things like that. So it, it’s been very difficult for my Mum.

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. Hes 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.

My Dad never, never came in to see me at hospital. Not at all. He was never there. And my brother, my brother and my Mum would find out about everything, and then I’d find out about it a bit after or something, or if they’re not there, I’d find out first, and they’d call Mum or something and let her know. But I’d always find out what’s going on, and how I’m getting along, and the treatment and everything, so I was up to date on everything.

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 hes 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 theres 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, theres always fasting and stuff going on, like for, like, different, on a Tuesdays or Mondays or Sundays, theres 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.

I think I maybe felt guilty for sort of hogging all the attention from my parents. I felt guilty towards my sister because perhaps I wouldn’t say she got pushed aside but you know the attention was mostly on me because of what I was going through. So yeah I felt slightly guilty that, probably my sister felt that she wasn’t getting quite as much attention as you know it was, she probably deserved and that, that’s certainly true but I think she, she knows why, certainly. But yeah.

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.

My sister had to spend a lot of time with her Grandparents because my Mum stayed with me almost every night in hospital so yeah my sister spent a lot time with either her Child minder or her Grandparents, which was really hard on her I think and, she didn’t really, I mean she, she understood what was going on with me [sniffs] but I don’t think she really understood how serious it all was, and I know she was scared because she was scared to touch me and, you know, I don’t, I don’t know what she was like at school, I think she was a bit disruptive and I think, she was upset quite a lot at school and so I know it was hard for her.

How old is she?

Shes ten now, shes 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, ones younger, hes eighteen now, and ones twenty-four.

Okay.

So, my Dad, my Dad would come up and stay with me on weekends, so give my Mum a break and hed, 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?

Shes, I’m, when I told her that I was, all clear she was really, really happy and, yeah, I mean were 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.

Now I, I wasn’t with them, I was at home looking after [brother & sister] and so I, I was only told about this by Mum and Dad. But, I think that probably gave Mum and Dad the heeby geebies [laughs], and it, while they were gone it was, I was sort of going through everything in my head and thinking well yeah, it’s, everything would fit with it being leukaemia or cancer or something. So but I was trying to put on a brave face for [brother & sister] and trying to say, ‘Oh no it’ll be fine, don’t worry. When they eventually woke up anyway [laughs], but then Dad rang and said, ‘I’m coming home to get you. And I immediately knew, hang on, yeah this is. And then, when he got home I think he sent [brother & sister] to do something, I don’t know get dressed or, I can’t remember now, and he said, ‘Yeah, we were there sort of five minutes and they said, it’s leukaemia. But he said, ‘Don’t worry it can be treated, don’t worry. Then we went to the hospital and he sort of, Dad prepared me saying, ‘Look hes on quite a few machines’ and, but by that point he was… I suppose, to all intents and purposes, if he wasn’t on those machines hed have been dead at that point. But they were trying to do lots of things for him. I, I can’t remember how we worded it for and, but my, I was constantly, I was included in a lot of the doctors’ conversations with Mum and Dad, and I, I sort of, then took on the role, for [brother & sister] looking back, I took on the role of sort of trying to explain to [brother & sister] and, and help them understand what was going on.

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.