They told you that your hair was going to fall out?

Yeah, well, what he actually said, the consultant that I can remember, he said, “You may experience some mild, temporary alopecia”, and I didn’t have a clue what he was on about, and I, before I had the whole cancer experience, I always thought it was people getting cancer that made their hair fall out. I didn’t know it was the treatment. So that’s why I think that’s why I was kind of – well, “I haven’t got cancer; I’ve got hair”. So he said, “You’ll experience mild, temporary alopecia, and well give you a wig”. And you just look at the wig – the woman who came up – she had this shopping trolley full of wigs, and they were all for like old people, because she worked with old people. And they were the most horrible things I’ve ever seen in my life, and it was just it – And I always think it’s a bit cruel at [hospital] because when I was on chemo they had this woman and she had the longest hair I’d ever seen in my life. I thought that was a bit mean [laughs].

And any side effects?

Yeah, quite a few [laughs]. I mean I was, I was very lucky I didn’t get any nausea, well I had nausea but not, not real vomiting. Theres so many isn’t there? [Laughs] it’s like [laughs] endless. Yep lots of mouth ulcers, and asthma, hair loss obviously, general tiredness and sort being really prone to lots of infections. I was also living in a student flat that wasn’t incredibly clean and didn’t get the greatest nights sleep and that sort of things so I, I tended to find I’d, sort of a get a sore throat and a crazy temperature and, I ended up sort of back in as an in-patient a couple times ‘cos I got infections and that sort of thing.

The steroids were, they, they do have quite a pronounced effect actually with sort of the, flushed cheeks and getting a bit podgy and a general kind of a bit, putting on a bit more weight I think, I think part of that is also related to, well the steroids make you so peckish, I used to wake up at four in the morning and be like, ‘ooo’ [laughs] off for biscuits or something, and I also found with, with while I was having chemo in general I’d put on a bit of weight because I think, you feel so, I felt so lucky to be alive and to be here, that you sort of, you feel like eating what you want and it’s like ‘Oh you can eat a whole bar of chocolate [laughs] I’m alive [laughs]. Or because the chemotherapy made my mouth taste quite metallic, and so you’d sort of be, you wouldn’t fancy certain things like bananas, I went right off bananas, but like spuds and pineapple and there were certain things that just tasted really good so, you sort of, you tend to eat, this was like the crazy diet I must admit but other side-effects?

When did your hair start to fall…?

To fall out? Almost immediately sort of a couple of weeks after my first chemo I think, and it was, I had extremely long hair, it was sort of well past my waist so and I was very, very used to it and but I think, I mean if, if I’d just lost my hair, strangely I think it would have been more difficult to cope with, because there was so many other things going on there was so many other side effects I was worrying about and it seemed like such a minor thing almost, to… because, you’d sort of, been through this big operation and theres so much to get through that it’s like oh hair loss it’s just another thing, you know [laughs], it’s a bit chilly [laughs] yeah.

Have to wear a woolly hat?

Yeah and I and I had scalp cooling as well so it didn’t lose all of it but was very thin and quite obvious but yeah it was the middle of winter by the time I was sort of, really thin, so I could wear a woolly hat and yeah it was fine it didn’t really mind, I didn’t really mind at all. And it just seemed like another, part and parcel, it would just be sometimes you’d, it was more of a shock than anything, ‘cos some mornings you’d wake up and totally forget and be like, ‘Oo’ [laughs], ‘Who’s that person in the mirror?’ You know, it was a real kind of surprise, almost, almost sort of in your dream you’d see yourself with long hair and then, ‘Oh it’s gone [laughs]. Yeah so that was…

A major issue? No, I always thought it would be and initially when I was diagnosed, I thought, ‘Oh gosh I’m gonna lose my hair. No but, when there was so much else going on it sort of, fell by the wayside, I think if today if was in perfectly good health and I lost my hair then it would probably be more of an issue than, than it was then so,

You get through it eventually I think, and you, you sort of come up with coping strategies, for example because, I’d got so many infections in thefirst couple of ones I used to, my Consultant gave me, on about the tenth day when your immune system takes a real drop, I started taking antibiotics. So that really helped cos it sort of stopped me getting so many infections. I also had a drug called Eperex, it’s called Epo I probably shouldn’t use the brand name, [laughs] and which helps boost the red blood cell count. Cos I was having trouble with anaemia and I’d had a transfusion during my surgery and they were sort of very keen for me to be able to keep going rather than have to stop dancing and stop going to University, so they, so they gave me this thing to boost the red blood cell count which was great cos I was till fairly anaemic anyway, but it meant that I could actually carry on I didn’t have to put back my treatment at all and that sort of thing. So that was, that was really good and so I’d sort of gave myself an injection three times a week of that which was really, really helpful with the anaemia [laughs].

Okay and regarding side effects, short term side effects, they told you that you were going to lose your hair?

They told me I was probably going to lose my hair which was, yeah my doctor said it was almost certain I was going to lose my hair. Yeah that, that embarrassed me hugely. I remember when I was, when I was having my treatment walking around shopping centres and just everybody looking at me. It, its, its, people underestimate it but it’s the most embarrassing, it may be the most embarrassing part of having chemotherapy and the one that makes you feel the lowest emotionally. Because you, you really do stand out from everybody else if you’ve got no hair, sort of an 11-year-old boy without any hair isn’t exactly normal. So yeah and I mean…

That is a big issue?

Yeah definitely a big issue, absolutely, especially, I mean for boys it’s a big enough issue but for girls I can imagine it’s even bigger.

And what about losing weight, did you?

No I actually did the opposite, [chuckles] I put on weight, I got pretty fat actually because I was given some, I was given Dexamethasone which is –

A steroid?

– powerful, very powerful steroids to, to make me feel hungry all the time, so I ate a lot and I, I really bloated, I got pretty big [chuckles].

And what about, were you sort of hyperactive or able to sleep at night or?

Yeah I remember being able to sleep at night. Hyperactivity wasn’t really an issue for me, no. I was, I felt pretty tired most of the time actually although I was, I was quite missing being able to get out and play sport and stuff because really when you’re sort of in the middle of treatment you don’t really have a great deal of energy and even if you want to sort of go out and be active its, its pretty hard, its impossible really.

So what happened? Which side effects?

I lost my hair. That was pretty annoying. That was the one I was most worried about really, because then people can tell that you’re not very well. What else did I loose? Just fitness, that’s pretty hard. I think most of that’s because you’ve got the Hickman line in.

I couldn’t exercise because the sport you know, you can’t do too much, no matter how hard you tape it to yourself as well. Theres always a chance that it could move or hurt you, so yeah, I couldn’t do much sport or anything. The most I could do is walk around a bit, so that was hard for me.

Did you loose your eyebrows?

Yeah, everything, entirely, so.

Did you loose your body hair also?

Yeah, yeah. Wasn’t shaving my face then so it was all right. Loose all your arm hair, leg hair, everything.

So how did you feel about it?

I think that is probably the worst thing, you know, because it is what people can see then. It’s probably pretty superficial – it doesn’t bother you like that, it’s just, you know, people can tell you’re not very well, and when you’re going out you do get the odd look. But it was something I was particularly worried about. I never saw anyone without a hat on or anything, so.

So you wore a hat all the time?

Yeah, I never let anyone saw me without a hat on, so.

Okay, so how long it took for the hair to come back, and your eyebrows to come back?

Well, I’d done the first three months and lost it straight away on that, and then when I was having the operation it was still gone then. The next three months was just as bad, so it made sure I lost it. Then for the last treatment I had they did six months of quite a low intensity chemo, and all through that it didn’t really grow back. There was like a little bit of stubble on your head, but after that it finally started to grow back. And then probably a month or two before I looked normal.

Okay, and your eyebrows?

Yeah, yeah. They came back pretty quick.

Yeah?

They started to grow back in between the treatments, so maybe two weeks, and they do start growing back.

And how were you feeling in yourself, while you were having the chemotherapy?

It was pretty rough, [laughs] you know, feeling sick [laughs]. I found I was only really sick while I was in hospital, so right over when it was going in, but as soon as I went home, you know, I stopped being ill. And probably a couple of days after being home got back up to being my normal self, in between the chemo’s. Not particularly special, but not too bad either I could still do some things. I was working, for my dad, so, you know, if I needed a day off then hed let me, so that was good.

And when you lost your hair you shave it off, or you just let it?

No, I cut it short. I had quite long hair before and then cut it shorter so it was about half an inch, and then as soon as it starts falling out then I’d just shave it off, more because it’s a nuisance than anything. Wake up with loads of hair all over your pillow, it’s just annoying, so just shave it off and can’t really tell much difference.

Ok

One of the things that was really bad from my point of view was the doctor told me that I would definitely on, on this particular regime of drugs, I would definitely lose my hair. I had blond hair right down to my bum, and I, it was really nice I really liked it, everyone else really liked it, everyone used to comment on it and it was, you know, it was my crowning glory really. So I was really, really upset about that and I remember thinking, ‘cos some of the nurses were very nice you know, and they said, ‘Oh, maybe you know, you, you’ll be better off shaving it off now. And I thought to myself, [laughing] you must be joking, I’m going to keep it to the very last minute that I can and things like that.

It wasn’t till after my second dose of chemotherapy that my hair began to fall out, and it did literally happen overnight. One day it was fine, and the next day it was coming out in handfuls. So what I did was I had it cut to a bob, but this only lasted a couple of days, and then it was, it was just, I had bald patches. And I remember my parents took me out for lunch and I was really embarrassed because I went into the toilet and I had like a black top on, and you could see where all my hair had fallen out down my back. So against all my previous thoughts I did actually shave my hair off to a grade 1 which was really, really horrendous and my Mum hid upstairs and my Dad and my, ‘cos I’ve got a younger sister, and they, they did it. And were trying to make a bit of a joke out of it you know to make me feel better. And I tried my wig on for the first time which was sort of shoulder length blond number with a fringe. Which I thought at first, oh my God it makes me look really funny but luckily my sister who’s really good at doing hair, unlike myself, managed to style the wig and actually put a little clip in it so it actually looked less like a wig, I thought. So I got, I got used to the, to the wig and I always wore it whenever I went out. When I got in the house I’d usually sort of take it off and just wear a scarf or something. One thing that I do remember being really weird is the first couple of nights without hair, I’ve never been so cold. I mean, this was in sort of like February time but my head was, I had to get under the covers completely to be able to go to sleep ‘cos I was so cold. So my boyfriend bought me, a sort of a baby’s fleecy hat that I used to wear in bed at night to keep my head warm which, which I’ve still got because it kind of reminds me of, of that time but at least I could sleep then.

I, as soon as I found out, I basically just shaved my head and just got on with it and thought, well, might as well get it over and done with. I’m going to lose it at some point so I just basically just did it straight away and hopefully that would, that would be it over and done with. I didn’t, didn’t really feel any kind of, no real problems with that, what I did find strange was losing hair from other parts of the body, particularly in sensitive areas.

At the time I was single, when I first got diagnosed, but I actually met my current girlfriend during my chemotherapy and I found again, that was a bit of a, bit of a stumbling block for me. A bit of an issue, yet I felt, I felt different from everybody, I didn’t, I didn’t want to you know. There was, I mean there was literally just no hair on my body full stop and it, it kind of felt very strange to be entering in a relationship and you know and entering a sexual relationship as well, with such a, a different body to the norm basically. I wouldn’t say deformed because it wasn’t, it’s not, it’s not a deformity it’s just, it’s just something different and I, I didn’t ever approach it like that I just kind of felt I had to take things a little bit slower and I was quite honest about that sort of thing ‘cos I was lucky with the particular person that I was with that I could raise those kind of issues.

Let’s talk about side effects because you said that you were ‘sick’ You were sick all the time while you were having the intensive treatment?

Most of the time, not all of the time but in the first month I was pretty much throwing up constantly, which was very unpleasant. But after that first month when I went to the hospital close to me I still felt nauseous. You know, I still felt sick but they gave me anti-sickness medicine to lower it so I wasn’t. I was sick maybe once a month perhaps, maybe a bit more than that but luckily the medicine helped me so I, I didn’t feel quite as ill as I, I would of. But it makes you really, very tired. Gives you terrible headaches. And just basically it makes your body feel, feel drained of energy so, you know you, you, you just feel as though you can’t actually do anything. You just feel as though [laugh] you’re a puppet. You know, you just sit there as if, you know, I can’t move until, until I’m, until I feel a bit stronger or until I’m actually moved myself. So it’s.

So that year was a tough year?

Very and I wouldn’t want to go through it again and anyone who is going through it, then I know how you feel. It’s very difficult but there is a light at the end of the tunnel because I’ve got through it and you can get through it as well.

I don’t take any medication at all. I haven’t since I had chemo and everythings absolutely fine and my health is perfect and I haven’t had any problems since.

Ok lets talk about steroids. For how long did you have steroids?

I had steroids as part of my treatment. So I’d be taking them for two weeks continually and I had three cycles of them. And I was taking a massive dose. I was taking like fourteen prednisalone a day, which has its advantages and disadvantages. The advantage is that it increases your appetite loads so you can eat loads and you feel like eating loads which if you like eating is great. But they do make you put on a lot of weight and I put on about four stone when I was taking them. And of course they do tend to make you all puffy, and your face puffy, which is another thing about cancer making you look different.

Ok that’s the disadvantage, ok you told me about both things. Did you know why they have to give the steroids, you knew?

Well as part of the treatment the thing that steroids really do is to take all the water out of the tumour and that’s the reason why it, the tumour shrinks quite a lot at the beginning because you’re hitting it with all these steroids and they take all the water out so it decreases.

Ok. And you put on weight quite rapidly?

I put on weight really quickly and a lot of weight which in the end got ridiculous really. And after treatment I kept putting on weight because I felt that if I was putting on weight then the cancer wasn’t there because when I was diagnosed I actually noticed I’d lost over half a stone which I put down to just being fourteen and growing at the time. But as I, after treatment I thought as long as I was putting on weight the, the cancer wasn’t there and I needed to worry until one day my consultant said, ‘Well I think it’s time to stop and that is gone and we should start thinking about losing some. And well I’ve made an effort but I haven’t quite got there yet but…

But you have lost a lot?

I, well yeah I have lost a lot but even so I did feel that, I felt quite secure putting on weight because I knew that I didn’t have cancer.

Ok so the thought of losing weight makes you a bit afraid?

It does make me afraid. Not so much now I think I’ve passed that stage now and I just want to lose weight and get back to normal. Yeah but originally and straight after treatment it did make me feel very secure putting on weight.

And what did it do for your self-image because I mean being a teenager all those things?

Yeah. [pause] Well it did decrease my self-image putting on a lot of weight but at the same time because it was making me feel so secure in not having cancer I preferred to be putting on weight [laugh]. It was yeah.

It’s taken a while to lose weight?

Well yeah it has taken me a while [sigh]. I eat a lot anyway so it’s harder then but yeah it has taken me a while but I’m at the stage, I’ve got to the stage now and I haven’t been at it long where I really don’t mind losing weight. And I’m trying to but it is quite easy to do especially after having prednisalone which makes you just all big and bloated but as soon as you stop taking them and your appetite goes back to normal you find that you do lose weight quite quickly.

Okay what were the side effects of the intense therapy, the intense chemotherapy?

They were the same as the first time but a lot stronger, the side, simply a lot worse. Like, like the first time I remember having sort of really quite strange mouth ulcers in my mouth from one drug called Methotrexate which it, it sort of takes away the skin of the lining of mouth inside so it, it’s painful to eat, swallow and that sort of thing. That, the first, the first time I was treated that only lasted a couple of days at a time maybe, maybe two or three days at a time but the second time I had it, had it, the, the doses of the Methotrexate I was given, being given were so high that it lasted sort of two or three weeks at a time. And for that sort of period of time I literally couldn’t open my mouth to speak. I, I had a sort of pad of paper by my bed in hospital to write things down for people because I couldn’t, I couldn’t talk to them.

And well hair loss was the same and, but the second time I wasn’t, I, I didn’t put on so much weight, actually I’m not quite sure what that was, why that was but the second time no I certainly didn’t, if, if anything I got a lot thinner the second time.

Okay.

The second time round.

Did you have any pain?

Not after the treatment was started because the first lot of treatment they gave me, I remember actually sitting in hospital just after I’d been taken in and the first load of chemotherapy they gave me was actually through a syringe, through a cannula in my hand because they hadn’t had time to put the Hickman line in yet. And they gave me sort of a, a syringe full of one called Vinblastine in my hand and literally twenty-five minutes later the pain that I’d been sort of suffering for the last three months just went away, like that. And I, that was the last I felt of that pain, twenty five minutes after the chemotherapy had been given to me, it was really strange [chuckles].

Well

– in more detail?

– in more detail, yeah.

What does it do?

That was, okay I had to sit in a blood donor place at the hospital I was being treated at for, I think it was four hours I was there with a huge needle in my arm, [chuckles] literally it was the biggest needle I’ve ever seen in my life, but anyway, stuck in my arm for four hours. And they had to you know basically just drain newly growing cells out of my body from just as I was coming back from the period of being neutropenic i.e., when I hadn’t got any blood, white blood cells left they had to drain all the stem cells which are the baby cells out and sort of harvest them for when I’d need a stem cell rescue after the BEAM which was the high dose treatment which would sort of really completely take away all my immune system.

So basically you know the stem cell thing was as a back-up for after, after the high dose to sort of help me recover much more quickly.

Tell me about side effects, did they talk to you about it?

Not, I really don’t remember. I don’t think it was mentioned a lot, I think the side effects vary so much from person to person that instead of telling you a whole list of everything that you possibly could have, they just wait until you ring up and say ‘I’ve got such and such an ache or ‘such and such hurts’ and they’d say ‘Oh no, that’s normal.

And what was your experience regarding side effects?

It varied. I mean I had these headaches after lumbar punctures and they really were one of the worst things. Some of the other drugs, I think it was the sitarobin, that makes you, made me very nauseous, so they gave me anti-sickness tablets. But it was, it was often that you’d have a side effect to one thing so they give you something else which gives you another side effect and you think I’ll just go back to the original side effect and [laughs] that way I’ve got less things to remember to take.