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, everyones 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 everyones 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.

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, theres 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.

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, theres 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, theres 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 theres no, nothing, not even getting better would make me happy. Nothing could make me happy because everything was, there was nothing.

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.

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.

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.