Interview 45

Age at interview: 24

Age at diagnosis: 16

Brief Outline: Diagnosed 1996 with stage IV Burkitt's lymphoma, a type of non-Hodgkin's lymphoma. He received chemotherapy as an inpatient for five months, followed by 15 sessions of radiotherapy.

Background: Pharmacologist, single, no children, lives with his parents. After his treatment he went to do a pharmacy degree and wants to work in a Teenage Cancer unit.

More about me...

Sex: Male

Age at Interview: 24

Age at Diagnosis: 16

Background: Pharmacologist, single, no children, lives with his parents. After his treatment he went to do a pharmacy degree and wants to work in a Teenage Cancer unit.

Brief outline: Diagnosed 1996 with stage IV Burkitt's lymphoma, a type of Non-Hodgkin's lymphoma. He received chemotherapy as an inpatient for five months, followed by 15 sessions of radiotherapy.

Also interviewed in our teenage cancer section.
 

In a bout of depression during treatment nothing gave him pleasure and he lost his will to fight for a while.

It's very hard because I was only 16 and I didn't know what depression was. I mean depression's kind of strange, I don't know. I mean there was one, I think there was one period I just was depressed, I was just so depressed I couldn't stop it. I mean it was just one episode that I was depressed in. I was depressed after my therapy but during my therapy there was this one, I think it was the fourth episode, that I was depressed, I became depressed, it was, it's a weird thing, depression's like you can't' Like now I can sit and watch the television and be quite happy about watching the television, I quite enjoy it, get home and kind of look forward to getting home. I look forward to taking my socks off and going to bed, that's my' feeling on my feet and that's nice, little things like that are nice, little things like stroking my dog or talking to a friend or driving my car or something, its nice, it's a nice feeling. And you get kind of a buzz from it, you get a buzz from eating, you get a buzz from eating chocolate, you get a buzz, you know, just sort of like nice things, the sun coming out' that's nice, that's happy. But when you're depressed these things don't do anything for you, they don't, they just, there's nothing, it's just everything's, I don't want to be a clich' and say everything's black, but nothing does, nothing gives you kind of'

Pleasure?

Yeah, there's no stimulation from anything, you don't get stimulation and the stimulation that you normally get from, I mean because when you're not depressed you can sit in a room and just, you'd be quite happy to sit in a room and just wait half an hour, but sitting in a room and actually, and not having, not any, and sitting in a room when you're depressed is the most, is awful because it feels as though' I suppose the way I used to think about it is like all my, like when I wasn't depressed all my senses were sort of out. So like things that I did externally, they kind of gave me pleasure.

Uh hmm.

Like just talking to people or just making jokes or just talking to people who are just like the tea lady or something, just talking to people made me laugh, it made me happy because I could feel things. But when I was depressed all my senses were inwards and there was nothing in me that could make me happy, so that it didn't matter what anyone else did outside, externally, anyone else did outside of my body and my head that would make me happy any more. And it was something I had to kind of almost, I felt as though all my feelings were sort of directed inside of me and I couldn't, and there was nothing in me to make me happy any more, there was nothing in me. That was very hard, a very hard period to go through. 

I didn't refuse any medicines or anything, I didn't refuse anything but I just remember I felt as though my sort of soul and my kind of will to fight had just been, you know, the kind of fire had just been put out in me. I felt that for a while. I felt very low, very hard to, I couldn't bring myself to sort of cope with fighting this illness all the time. And it wasn't as though I just wanted to die or anything, I just couldn't do anything, I felt as though my heart had just stopped going in to this, you know, my kind of drive had stopped.

But I remember being like that for a week or two. That was quite bad. I remember being very, and as though every minute took hours to get through and there's no, nothing, not even getting better would make me happy. Nothing could make me happy because everything was, there was nothing.
 

Remembers how the behaviour of staff towards him changed during an ultrasound scan and after an operation to remove some tumours and take a biopsy.

But I remember the ultrasound scan. I remember the guy who performed the ultrasound scan was really jolly. He was a really nice man, he was, smiled and he sort of made a few jokes and I remember his face just falling and it, the sort of atmosphere just became serious very quickly when he started to, after he'd put the gel on and started to perform the ultrasound. I remember him being, becoming very, just his attitude changed and in the kind of, the way that you just feel that something's not quite right, something's worrying. I remember him being very worried, just looking as though he was quite concerned. Just going from like a really jolly, happy confident and kind of, that everything would be fine to kind of very serious professional, you know a professional aura I suppose you'd call it, go from a happy. I remember that and I just remember thinking to myself, my head was saying, 'Everything will be fine, don't worry about it,' and my sort of heart was saying, 'I'm quite ill, I wonder what he's thinking, he's not saying anything but he's, I wonder what he's thinking.'

And he was, the nurses were quite' and it was weird because when I first went in the nurses were all kind of optimistic and bubbly, it was just like the ultrasound guy who, they were all sort of bubbly and bouncy and I used to joke with them and you'd just have a, just be silly and sort of try and be, try and talk about what it was like in school. Because I mean I was the youngest there by pretty much ten years, ten/fifteen years and so they used to just be silly and make me laugh and things like that. And they were a really nice bunch of people but it was weird because when I came back I was no longer in the middle of the ward, I was right by the nurses' station so they could sort of keep an eye on me. And although they never said anything I started to feel worried that they knew something and I didn't, or they thought something and I didn't. 

I remember them in, their opinions changed they just, they started, they stopped being kind of bubbly and informal and kind of showing their personality and just becoming professional. And that was quite difficult to cope with, I think they found it difficult to cope with the fact, I mean what they were thinking of, what they thought I had, I think that they knew something and I didn't. And I remember being quite confused about what was going on.
 

For him a central line was a Godsend because it made things easier.

Did you have a Hickman's line?

Yeah I had a, well I had a Groshon line, which was, it really did because when you have chemotherapy your veins sort of collapse, and the cannulas and things like that they have to be inserted again and again. So I had a Groshon line in my top part here, which was a real Godsend really because, I mean they have to take blood from you every day, and if it wasn't for the Groshon line I'd have to have blood taken from my vein, and I didn't like blood being taken. It wasn't as though it hurt that much, it was just, it did hurt but I just didn't like doing it and it was just so much more easy just to have these Groshon line things. It was a real Godsend really and they really did make things quite easy, especially for drugs, I mean I didn't have to have quite so many injections and it really did help, I mean all the chemotherapy went through them. I mean they did one, they do tend to get infected, when they do get infected then they become a problem but they're'

Did it happen to you or not?

I think towards the end I had a', there was a suspect of it becoming an infection and it was infected by', but I don't think that it, there was talk of it having to come out but it didn't come out in the end, I kept it till the end.

Looked in a mirror for the first time in his five week stay in hospital; at first he didn't recognise himself, then became upset by his changed appearance.

And I turned round, I always remember this, I turned round and this was the first time that I saw myself in the mirror for five weeks, and this had been five weeks and I didn't know who I was, I just looked, I looked in front and I just didn't recognise myself, I didn't, I just ignored because I didn't think it was me, I just looked at it and thought, 'I wonder who that is?' And I looked round and there was nobody there, it was me because I was' And I'd got a sort of steroid face, my face had changed, I'd become fat around my face. I'd started to lose my hair around the side, because I had quite long hair previously, I started to lose my hair around my sides of my head where it had sort of fallen off when I was lying on my pillow at night. And I had grown a sort of moustache, a kind of really awful mid-pubescent moustache, which is awful. 

And I'd wear pyjamas and of course the pyjamas would have something like tubes coming out and I'd be all sort of, I had oedema as well around my legs, which made me look really fat in sort of strange places, and I'd got this awful face. And then my face had drooped so much it did look like a stroke, my face had drooped, my eyes sort of bulged out, my left eye bulged out, I couldn't control the left side of my face so it was sort of drooping and I was sort of dribbling and my eye was all red and inflamed and I'd sort of become fat in the face. And I looked at myself and I think that I, nobody noticed but I remember at that moment, you know, 'My God, look at me, I'm not'' I'd changed, I'd changed both physically and mentally, completely, I'd changed. 

It was like that was one of my defining moments. I think that the time on February the 24th, it was 7.20 at night, that was like my defining moment that, that was the bit when everything that went on before would be defined as everything that went on before, and after that would be the moment when it, I would say it, everything started or everything finished because that had changed, and that was one of those moments when I realised that everything had changed, I looked different and I was different.

I remember just stumbling towards the mirror, and as I sort of got closer I realised that I didn't like the way, I didn't like walking through it, I wanted to avoid it because I looked so awful, I really did look terrible. And I remember almost being quite upset about how awful I looked, it was really bad because I just, I don't know, I was very upset about it because I'd changed, I'd changed so much from what I used to be to what I was back then. And I didn't want to change really because I thought, 'Oh I could just fight off the illness and then everything would be back to normal', and it wasn't, nothing was, it was going to, everything was going to be changed from now on, so I wasn't sure what was going to happen.
 

Imagined that his body was a desert island being destroyed by aliens; chemotherapy treatments were bombs that killed the aliens but allowed the plants and animals to recover.

I used to think that when I was on my own and there was nobody, because its very boring having chemotherapy, its very boring, and I used to think that my body was sort of like an island a big sort of, a desert island with palm trees and luscious plants and like sandy beaches. And I used to think that the cancer cells were sort of aliens from an alien film or something and they just used to come round munching all the vegetation and killing all the birds and chopping down all the trees and sort of making everything awful. 

And I used to dream that the chemotherapy was like a big sort of bomb and every time I had a sort of chemotherapy dose that this bomb would go off and just blow up the whole island and rip the vegetation apart and it would damage all the trees and cause big storms but it would also kill off all the cancer cells, all these aliens.

So I thought, and then that was sort of being neutropenic, and then when I started to get better I used to sort of think of the trees slowly growing back, the leaves, the sort of storms going away and then the birds starting to sing, and the greenery sort of coming back. And that's how I used to think that that's how my therapy was going along, that's how I sort of used to try and visualise how things were. And I think that helped me quite a lot actually in a strange way because I used to think that that is how, because I was getting better after my therapy, after my neutropenia, so that it was, I could sort of see it. And in some ways that, I could sort of see myself progressing, if that makes any sense.
 

Felt dehumanised by diarrhoea and vomiting, having his bodily functions monitored, the lack of privacy, being repeatedly stuck with needles, and being fed through a tube.

The other thing about chemotherapy and being ill is really dehumanising. You don't feel sort of as though you're a person anymore. I mean I was 16, not exactly, I mean I don't really regard myself as aesthetically pleasing or anything but I mean you do think that you know you're a human, but rolling around in the bed and having bed pans and just having diarrhoea all the time and people checking up on you. And the measuring, everything, I mean they measure how much you wee, how much you've been sick and how much you've done whatever, and its just awful. I mean you have to say everything you just feel as though you're a warmed up piece of meat on a bed really just there to be a pin cushion.

And its strange because you do, you don't, I mean private things like going to the toilet you can't do that in a hospital, you can't, there are people are watching you. And you have to do that and you have to keep a brave face on and it's very difficult to kind of keep your mind focussed when you just feel as though you're in a glass house, everyone's watching you, everything you do is being monitored, I mean people wiping you down and stuff. And I did find that very hard.

I remember just at the end I was sick and I had a nasal gastric tube and it came up and I pulled it out and I wasn't worried about it but I thought, 'What's this?' And then they sat me down, two nurses sat me down, one to hold my head back and one to feed this tube down my nose. And that was another, just another sort of dehumanising thing that makes you feel, it's really strange not being able to eat, you wouldn't think that that would be a really weird thing but not eating and having your food through a tube in your nose, it does something that is very difficult to explain, it's not as though it feels as though, that's another thing I mean it's another thing that stops you from being who you are. 

I mean sitting down and eating three square meals a day is a sociable thing to do, you sit down and even by yourself just watching the television with a meal on your lap is, having food artificially pumped in you just makes you feel more like just a wombat piece of meat. Because that's effectively what you are because everyone's just worried about bugs and things like that. And you're in a clean room, you're not allowed out, I did feel as though I was this someone, sort of a big pin cushion I suppose.
 

After five months in hospital having intensive chemotherapy and radiotherapy it took him about a year to regain normal energy levels.

Yeah it was good because when I first came home I thought that I'd just return back to normal life but I was exhausted. I remember coming home and my parents had bought me a new chair in my room and it was great because I had this new chair but I sat in the chair and that was it, I had to go to bed then, I was tired. And I was exhausted like I was so tired all the time I thought, well this is strange, when you think you've come out of chemotherapy, you think that's it, you should be able to just do what you want to be able to do, you should be able to just, you know, a day or two walking around the house and then you'd be off to town and going off, going to do some shopping, coming back and staying up all night watching television, playing computer games, do whatever 16-year-olds do.

And it wasn't, I was cream-crackered, I was absolutely bazookad on the floor, I was asleep all the time, I couldn't, I used to have bad days all the time, I just used to feel sick all the time because I was so exhausted. I used to have infections, my body was still kind of getting over all the things that had happened to it. I was really thin, really, really thin, I remember it being a big day when I didn't have to use my arms to get out of a chair because I couldn't, I couldn't physically just get out of a chair. It had been quite a big day. I mean it was kind of, I was quite surprised that I actually could do it.

I remember the first time I could run up the stairs, that was a big event because I could just about get up the stairs, and then get up the stairs fairly comfortably, and then I found myself I could actually jog up the stairs which was quite nice. And then it was little by little I sort of, little by little I got more fit. But I remember just walking down to the village, which is no more than a five or ten minute walk, and walking back up and then having to lie down because I felt so tired and so ill. And that was it for the whole day. I mean a hundred metres would be a real big hurdle to cross.

And then I became very tired all the time, and then I think a lot of people, I didn't know at the time but a lot of people thought that I still had my cancer, I'd still got cancer, I didn't really think of it myself. I think, well they thought that I hadn't gone in remission, they thought my cancer had reoccurred, and so I went through more scans and they said, 'You're clear, there's nothing wrong.' And then it was just because I'd been so sort of treated, you know, just my treatment had been so rough and things like that I'

Uh hmm.

' I was so tired, so exhausted all the time. But then I, and then'

For how long do you remember, for how long did you, after you finished your chemo?

It was a long time, it depends because even now I still get tired, I seem to get more tired than normal people, people who haven't had therapy, even though I do try to keep myself, try to be fairly fit, not very fit but, you know. I do seem to get more tired but the first three months were pretty bad, the first three months of post-treatment I was really exhausted, I remember having perhaps one good day a week where I would be able to get up, walk around the house and not feel rough. And then after a couple of weeks it was sort of two days a week. And then I found after a couple more weeks that I'd just have one bad day a week, perhaps two bad days a week where I'd have to stay in bed and I'd just feel awful. 

And all the time I just sort of slowly started to get fitter. I couldn't, you know, I slowly started to be able to walk, and then I walked, caught a bus, came home and then I said to my parents that I wanted to help people, other people with cancer, and so I said, “I’m going to do A-Levels.” And my parents had a fit I think, they said, “You can’t go off and do A-Levels”. So I went. And so I went off, I went to college and once I started college I did a GCSE and two A-Levels and I was really not fit enough to do it but I decided, I was pig-headed and stubborn and I was going to do it anyway. And that helped, I think at the beginning I was exhausted all the time, I’d go, I would have a few hours lessons, I’d have to sit down, I’d phone up my parents, my parents would park round the back of the college and I’d just walk out to the car and then come home and go to bed, that was it. But after about sort of three or four months I started to be able to cope with a day, and then after sort of twelve months I was fairly fit and able to really cope with the day and not be shattered. It was about, yeah, I would say it was about four or five months until I sort of felt fairly comfortable and not feeling too ill.

His cancer experience gave him confidence and a reason for living, making him want to help other young people with cancer.

The positive thing yeah, yeah its kind of strange because I do owe so much to my cancer, I mean before I was just a 16-year-old kid with nothing interest' not special in any way, well not, you know, I didn't have anything to give to anyone, I didn't have any kind of reason. I didn't have any idea, I just went round in this kind of stupid thought of instability of being just 16 and everything would be the same forever and I'd just kind of carry on life from day to day and just waiting for the weekends and not really with any aspirations of doing anything.

I owe my cancer so much, the way that it's given me so much confidence, I feel as though I can now help people. And its given me a great deal of sympathy for other people who are both ill or who are also going through anything, any sort of pain, any sort of depression, I now feel as though I can help and I feel as though I've had this chance and this experience for, you know, that's given me such a' made my personality who I am now. I feel as though I went through my kind of teenage years of just, well my early teenage years of not having any sort of clarity of thought of what I wanted to do or to who I really was. But now I really sort of feel confident and happy in who I am and I now know so much more about the world than I did before.

A friend of mine a couple of years ago said to me, who had also been ill, she said to me, 'To have known true suffering it's inevitable that that person dedicates their life to ending the suffering of others'. I think that's kind of true because I mean the other people who I've met who have been ill sort of feel that way that you, to have sort of gone through that is the same, such a negative experience so many positive things can come out of it, it's a really amazing thing. Once, if I had the choice of, and I would never go through it again - bloody awful - but if I had a choice of having that in my past and not having it in my past I definitely would have it in my past, its been a life changing experience so much so that I would' I mean everything that I, most of the things that are now good in me are directly through the cancer. The things that I hold that are good in me, the things that I really like about myself and my personality are because of what I've experienced through having the cancer, has been very enlightening I suppose. 

Now how do you see your future, how do you? What are your plans?

I want to help people with cancer, that's all I want to do really, that's all I've ever wanted to do since I've been ill, it was like my defining moment. I just want to help people, I want to help people, ideally young people, sort of who have, younger people who are receiving therapy. 

I've just finished a pharmacy degree and I'm just about, I've got a year before I can practice but I'd like to ideally work in an oncology ward, ideally perhaps one attached to a teenage cancer trust which is a'

A unit?

A unit which I would like, I'd really, really, I'd like to help because I think that I could give more than just, just like professionally I think I could give something emotionally as well to people who are young, when I was 16 I know what it feels like, I know what it's like. I want to help. And that's what I would like to do, my goal.
 

Sharing his experience with a support group after finishing his treatment made him feel less alone, but hearing of others who had died depressed him so he didn't go back.

Tell me, have you been involved with any support groups?

I'm, through myself or'

Yeah.

'through helping other people?

Yeah I mean for yourself or to help with other people. 

Yes. I went to a lymphoma meeting which was kind of funny actually, it was kind of weird. We all went round in a big circle and we all sort of said, it was like an Alcoholics Anonymous meeting and we went round and said, 'I've got lymphoma.' And it was weird because everyone was so, laughed and joked, it was really surreal but we'd all been ill or we were receiving treatment and it was really strange because just looking in other people's eyes who have been ill there's something in them that is different. I mean they all came with their carers but it was just, you could just, you know who the person was ill and would have been ill, you just knew who they were because of the way they acted, because they were just different. 

And I remember that we all went round in a circle to talk about who we were and what it was like to be ill, and we just all went round in a circle and, 'This is what its like to be ill.' And I went up and said, 'You've got to fight' and all this, and they were really, it was quite funny everyone was giving, sort of clapped. It was nice, it was really good and I felt as though we'd all sort of been through the same experience, and there was, as though I didn't quite feel as alone and my experience wasn't such a solitary experience that nobody else had gone through. It was good, that was a comforting feeling that I felt.

You went to that meeting after your treatment?

After my treatment. I was too ill, personally I was too ill to have that sort of conversation, well just conversation with anyone or to have gone to the meeting I'

After how long after your treatment?

That was probably about three or four months after my, not as long, I did have a big kind of rope, big day when someone said, 'You're in remission,' it was my last treatment, it was sort of through all that time of my last treatment. Though I did find that quite difficult because at the end someone said, 'Oh', that was talking about somebody, I just heard in the background, they said, 'Oh yes he's died now', and I just remember, and I just felt that was just so hard to cope with because I found that very upsetting and so I didn't go again, I found that too difficult to cope with. And then that was it for a few years I didnt do anything.