So we were talking about you having a Hickman line. Can you explain to us the procedure? How they put a Hickman line on?

I was a bit woozy. I can’t remember much. I think they make two, two parts to the start from, from the chest and then there on my neck part and it’s like down to your vein. And they stitch the top part and they stitch the bottom part. And then after ten days they take the stitches away and the Hickman line stays in.

So it’s done with general anaesthetics?

Yeah anaesthetics to numb everything.

They offer you like two different options, two or three options. I can only think of two off the top of my head. One is a Hickman line, it goes either there or there and it hangs out. Most people called them their wiggly because it’s easier. They get, I’m not going to put you off them or trying to you know but they get infected a lot easier, have to be replaced more often and things like that yeah. They’re a lot more there, they’re a lot easier for the younger children because they’re just there and you know. But you can’t do a lot of things, you can’t go swimming, you can’t like for instance with radiotherapy you wouldn’t be able to lay on your front, you wouldn’t be able to like sleep on your front, if you slept on your front or anything with the risk of catching it on things as well you wouldn’t be able to do things like that. You’d have to tape it down every time and cover it up when you went outside because of infection and things like that.

And then you could, you can have a portacath, which can go pretty much anywhere as long as it can be connected to a main artery or a main vein. I personally had the portacath because with it you can do everything you can’t do with a Hickman line. You can go swimming, you can go out, theres like nearly no possibility of infection, theres a very low possibility that you get infected. The only way it can get infected is if the actual surface where they put the needles in, say like the actual needle hole in your skin got infected that might be, that’s possibly the only way to get it infected. So I went with that because I thought it’s going to be a lot better, a lot easier, a lot, it’s not going to show as much, it’s not going to be. So I had a, an appointment kind of meeting thing with the doctor who’s going to perform the surgery to put it in. And we discussed about where it was going to go, how my radiotherapy was going to be, how I was laying, how I was going to be moved and if it was going to be in the way and things. And we finally discussed it, discussed all this for, for about an hour and finally decided on having it under my arm there. And it was, it couldn’t be put in there, because obviously theres sometimes you can’t have it there, on having it there under this arm or on my thighs. Luckily [laughs] they managed to put it in, in the first place we planned to put it in.

And they decided that it was definitely malignant, malignant, and but, but it had, but it hadn’t spread to any other organs which was, which was good. And then, what, yeah and then, and they they’d, they set out what they were, what they were going to do and that was really a lot. I went to see a consultant at and that, and he said, he was a specialist in this area and he set out what he wanted to do. And that included quite a few courses of chemotherapy. Sort of 14, which completely wrecked my plans to go to University that, that year, and it was, it was quite a blow for me as it meant that I had a year of nothing but having treatment really.

14?

10 to 14 treatments of chemotherapy. And they’d also probably want to operate on the, on the lump eventually, remove that.

There were, well there was only one option for treatment really. I mean my consultant made it, made it very clear that the only option was chemotherapy. Possibly then with surgery or more chemotherapy and then possibly with radiotherapy. And there wasn’t ever an, an option. And when I asked him about why they just couldn’t operate on it he made it, he made it very clear because hes a very fatalistic man, you know, ‘You, oh if we operated now you would lose your leg. Because he [laughs] hes very blunt.

He explained why he had to use chemotherapy?

Yes he did. It was to shrink the tumour because obviously the thing was too large to remove.

So then you went to see somebody about the chemotherapy?

Yeah so then discussions started about chemotherapy. There were two doctors involved, one who was a colorectal cancer specialist who was, who worked at a kind of adult hospital, and one was just a general oncologist who worked at the children’s hospital. But they thought it was important to involve them, them both in discussions which was very, very helpful for me. So various lines of chemotherapy regime that they wanted me to have, it was the Folfox regime, which is Oxaliplatin Fluorouracil and F5U no 5FU, it’s a long time since I’ve had them now so, so yeah but I had six months of that altogether cycle-wise, I had the one drug, Oxaliplatin that went in attached to a drip over about two hours, and then for the next forty eight hours I was hooked up to the other two drugs. So to begin with

So you were an in-patient?

Yeah to begin with I was an in-patient for those forty eight hours, so it, approximately it took three days out of every two weeks, and then that cycle repeated. In time they actually got this pump which actually held chemotherapy drug, and it meant I could have a forty eight hour drug at home. I just carried this pump around the house with me for example, which was very, very helpful.

So what happened to you, when you went to hospital? Can you tell me from the very beginning about your chemo and?

Oh, okay, then. I’d go in there and, well, I’d, I’d wait for the nurse which, like fit me up kind of thing, so I’d have, have a cannula put into my hand, for a blood test, make a blood test, and Sellotaped onto my hand or something, or under my arm, and, and but before I had a drip, they put in one hand. And I’d put a flush in there first, check for things going back and forth. Straight after that they’d get the whole drip thing, put this, put the colourful chemo thing in there, so probably like a red one. It put me off my Ribena as well, because it’s the same colour as that. And I’d have that for about four or five hours. Then a nurse would come in, because it beeps when it’s finished, the nurse come in, put a saline drip in it to clear it out again. I’d have that for about half an hour. As soon as the lines clear, have a second lot. Have that for about six hours or eight hours, whichever one it was. That would clear out. Set up with the saline drip again. And then a third lot, if there was a third lot. And sometimes chemotherapy went up to about 18 hours, sometimes 12 hours, another six hours, depending on how long, how big the bag was, how much, how much the dosage was for each one. I’d have that, and by the time it had finished I’d be really worn out. It would be about, it would be pretty late, because I normally had it in the morning, it went through the day, into early morning kind of nightish, and my brother used to pick me up from hospital because I recovered better at home. So it was better that I stayed, stayed at home. If I’d have stayed there, I end up being worse, because I end up I couldn’t eat there, the food wasn’t that good. And even the environment reminded me of being ill.

I went in for my second treatment. I went in for the blood test for my second treatment, and they’d had the results from my second biopsy thing, and they sat me down, and I thought they were just going to give me the blood test, and they were just discussing the blood tests results with me, and then they said, ‘Oh well, actually, weve had the biopsy results through, and your type of lymphoma is really quite aggressive. We do think that the chemotherapy that you’re on will probably do the trick, but theres another type of chemotherapy which we think would work a lot better, and we think it gives you a lot better chance of survival. And I sat down, and I said, ‘Right. What are you going to tell me?’ Because I knew that it was going to be harder. There was just something in the consultant’s face. And he said, ‘Well, you’re on an 18-week cycle right now. This ones 18 months. And my Mum sort of went, ‘Ooooh. And I went, ‘Right. Where is it? Give it to me now’ [laughs]. And he said, ‘Are you sure you don’t want time to think about it?’ I said, ‘No, if you think it’s going to give me a better chance of survival, I want it. I want it now. And I didn’t go back to school after that because it was a treatment called LSA2L2, or LT, I think, and it was a, a leukaemia style treatment it was very, very intensive to start off with. I had three months of intensive chemotherapy, for which I was mainly an in-patient. They did let me go home every so often, but mainly I spent the time in hospital, because then they could check my blood levels, I was there to give the chemotherapy to on a daily, or twice-daily, or every other daily basis. And then, for the other 15 months, I’d be treated one week in three, and I could spend that time at home. So that was quite weird, because I hadn’t been expecting that at all, I’d expected to, you know, have a couple of weeks off school and then go back to it, and suddenly I was just ripped out of that whole situation. But because it happened so suddenly, again I didn’t have time to react, really, to it. That was just, it was what I had to do, and it was going to make me better, and that was fine.

Yeah the, the baby dose and then there was, I think there was five large doses, sort of five of like large doses and then there was a maintenance dose at the end which was another large dose. The doses were, they were a week after, they were sort of every three weeks you’d have a dose, you’d have, you would be injected with sito-toxic drugs, you’d have injections, pills to take, you’d have steroids and whatever. And then, and then for the, for a week pretty much, by about a week and then all your, your blood cell counts would go down you, you’d lose your, you’d, you’d become neutropenic which is when you have no neutrophils which are, neutrophils are kind of a, they form the basis of your immune system where, where they are, they are 70% of your immune system. And they, and what they do is they, they fend, they fight off bacteria and, and viruses that sort of attack, you all the time. Well of course when you don’t have any, any neutrophils you, you, you’re very susceptible to infection which is pretty much what you get every time you become neutropenic you, you get an infection and then you have to be treated with antibiotics.

And that, that, then that was the second week, sort of getting over the neutropenia which, which is quite difficult in itself. And then you’d have a, a kind of, the, the, the third week would be sort of recovering from the, the therapy, the neutropenia and the [uh], and then sort of getting over the kind of being really ill and sort of your blood tests coming up and then you have a day or two off. And then, then you’d be pre-medicated with like fluids and things like that and then you would go through the cycle again. I, that’s, that’s pretty much what happened for about five months, five and a half months.

And then in the April of 2001 I was, I was seventeen by then ’cause I turned seventeen in November 2000 yeah not. April I went in for my operation I went up to [place] again, had this operation, and they removed my whole shoulder blade, my right shoulder blade because they were worried that if they left half of it in then the Cancer could still be there, but they said when they took it out there was hardly anything left of the Cancer, which was really good, but unfortunately when I had the operation something went wrong and my immune system just dropped suddenly when I was in the middle of it and I lost loads and loads of blood and I ended up in intensive care for a week on a ventilator ’cause I got a lung infection as well, so I was really, really ill with that. Finally I came round and they, I was on a general ward, and within a week I was home because I was so determined to get home [laughs].

So I started having physio on my shoulder and my arm to try and build it up and after the operation they changed my dose of Chemo, they said I’d have to have another eight rounds which [exhales] made me just so upset I just couldn’t believe it because they’d originally told me that I’d probably have six, the six rounds, then my operation, then probably just a another three or something, but they said because of the type of Cancer it was

Which type, was?

It was a Ewing’s Sarcoma.

Okay.

That they’d, they’d have to do another eight lots just to, as a clean up, so I was, I just couldn’t face another eight rounds of Chemo, but luckily they, they dropped one of the drugs and they changed another one so [sniffs] the dosage was lower and it was a different type of Chemo and it was, it was a lot better, I wasn’t as ill this time round and I, it seemed to be able to bear it a bit more.

They gave me the chemo and then I was un, but the treatment was too intense for me. It was way too intense. I didn’t expect it to be that bad. I was like, I couldn’t handle it. It was way too much. The first time it was really, really strong. You, it’s like you’re getting hit by a bus. That’s what it feels like the first time. Totally flattens you out. And then after that I said, ‘I’m not going back. I was out for the first of August and they gave me two weeks. I was basically meant to come back by the 14th of August and I had an exam, a resit for the 24th of August so I thought to myself why don’t I just stay here and do that exam and I don’t want to go through the treatment. See if I could find any other ways. But I couldn’t find anything. Every, everyone said to me, just family kept on saying go back to your hospital. But I didn’t go back.

You just found it too intense, too powerful?

The treatment was way too intense.

Did anyone talk to you about try to persuade you?

Every time I came in to the hospital the doctors spoke to me and said to me you have to go through the treatment. If you don’t go through the treatment then it could be fatal. I didn’t listen. I just thought to myself I don’t want to go through a treatment at all. It’s just too much because I lost a lot of weight and I felt really, really weak.

What made you change your mind?

I started back up at the gym. And I put a little weight on but then at the same time I got bruises coming on my leg. And I went to the doctor, hospital again and they checked my blood and they were ‘You were in remission but you are no longer in remission any more. It’s basically that you’ve had a relapse so it’s come back and you have to, get treatment and otherwise it’ll, it will be fatal. And that’s when I realised that there is no way around it. You have to go back. I started, I started feeling pains in my joints and the bruises were on my leg and that. And they were raised just like big lumps and that’s what scared me.

Did you manage to talk to someone about your apprehension, your fears regarding chemotherapy?

I didn’t talk to anyone. I just kept, I usually bottle my feelings. I don’t really tell other people this is what I am going through. I don’t tell my best mates anything like that. It’s just the way I am but obviously I, every one needs someone to talk to. I just kept it to myself.

It would have been better if I spoke to someone and told them everything that was going on and then they would have given me their opinion as well, you know, but I just kept it to myself. I didn’t know I was just, I thought to myself I’m going through this on my own so no one could understand what I’m going through not even my mates and that. So I thought I would just keep it to myself. When I used to see them I used to have a, you know, a smile on my face. I was cheery and that as if nothing was, nothing was wrong but they used to say it to me all the time. You need to go back for your treatment.

How determined are you this time to go through the treatment?

I still have fits [laugh]. Last chemo just at the end of it New Years I took a bunk. I ran away from the hospital while my counts were down, while I was neutrophenic which the doctors weren’t too pleased with. It just got to me that sitting on your own like being isolated, not talking to anyone. Everything just the, everything kept on repeating in my head and that and just wanted to get out basically. So just put on my clothes and then I just walked, walked out and went home. Just jumped in my bed and just went asleep in my own bed and next day woke up in the morning got up and got a taxi and came back here after I’d calmed down.

But in a way sort of you are more willing now to go through with it?

Yeah. I think I’ve been through enough, I’ve done enough damage [laugh]. So it’s time for me to face my problem head on.

Is there anything else at all that I, you would like to tell us about your experience?

Just tough going through it but doesn’t matter how tough it gets you have to go through with it. Can’t back off because if you back off you make things worse for yourself, my treatment would have been finished by now. I would just need four chemos, four dosages of chemo and I would have been finished but because I ran away it’s taking up to a year now because it’s going to take four chemos and then a transplant and then for six months I’ll be sensitive to the outside environment because my immune system is still going to be quite low. So that’s taking longer now. So I would have been finished a lot a, you know, well before.

So what will be your advice to other teenagers who are going through chemotherapy?

Obviously don’t run away. Just go through with your treatment. It will be hard but the first one is always hard after that it gets better. And just hope for the best.

And when you said that you took care of what you ate during the treatment. Do you remember what you…?

I had, I drank loads and loads of water. I drank a lot of water. I drank a lot of milk and stuff. But mostly, I had a balanced diet, I had a lot of proteins like milk and stuff, and had breakfast, made sure I had breakfast here every morning, just to keep my, keep my diet sort of going, so that I didn’t lose weight, because I knew that if I had, when I had, when I had chemo, I’d lose quite a bit every time I had chemo, because I couldn’t eat for two days. And so I made sure, the week before that, the time I had to prepare for it, and I’d be eating properly, which I got a load of vegetables and stuff. I had, like, a very mixed diet. A lot of, like, roasts, chicken and stuff, or vegetables and potatoes, like roast potatoes or whatever. Not fried, not so much fried. At the same time, when I did go out to meet my friends, I still had, like, junky foods. I’d keep it all balanced. I didn’t, I didn’t get bothered by having too much healthy food. I still kept a balance of having junk food at the same time. So I had the crisps and chocolates. That made it, made it even out and everything else, because, so I never felt too much, you know.