When did your radiotherapy begin?

Well I got back from [hospital] down to here and obviously a few weeks back and forth from the local hospital to just obviously check some things and to discuss how the whole thing was going to go. So I’d guess it was a couple of weeks and then the professor came down again with a whole schedule, the routine of when I was going to have radiotherapy, how long I was going to have it for, whereabouts on my body I was going to have it. So I’d say it was about three weeks and then I started on a Monday because for the radiotherapy, well for my radiotherapy anyway I started on Monday, had it every day until the Friday and had the weekend off of radiotherapy and I had that for six and a half weeks.

Yeah that was [laughs] yeah the first thing you have done when you go down there is not necessarily going to just straight away be the radiotherapy. Dependent on where you’re having it they make, they’ll make a body cast. For me I had a face mask and about like up to there kind of thing made for me. And what they just, they lay you down [laughs], they pour this freezing cold rubber stuff over you and then they turn, and then they turn you over, do it on your back, absolutely freezing cold and then they chill, obviously they freeze it or something, I don’t know what they do to it here I don’t know but then it becomes see-through plastic which they use and so they set it up on the machine and they set up specifics. And you get little tattoos on you, they’re miniscule ones because the machine uses like light to line you up to make sure at the same time you’re always in the same position. So you have like three little indicator tattoos. I can’t find my any more but they’re there somewhere. So you have them done, you have the face mask and then they, it takes them a couple of days and they line you, so, make sure that every time they put it down it’s all lined up and then obviously to them it becomes clockwork because you’re in every day. So you have all this preparation done and then they, for your first time they, obviously they reassure you a lot, tell you everything, ask you if you need to be comfortable, if you need anything under your knees or if you’re cold or you know.

Who was reassuring you at that time?

Both my parents and the radiotherapy technicians because obviously they’re not new to it, they’ve been doing it for quite some time so they’re like you know because at the time, fifteen I’m like, I was probably the youngest patient they’d had there for probably could be, I’m not going to say it’s ever but it couldve been, ‘cos, ‘cos I’m tall enough and big enough I was able to use the adult sized you know radio.

Son’And we met with the doctor and he explained about radiotherapy and how it’s done and he was, he was a brilliant doctor he was crazy, he, he really was mad. But –

Mother’He made you feel –

Son’Yeah, really made you feel at ease from the moment when I walked in to the room. I can remember sitting down on the chair and him pulling my trousers leg up and looking at my socks and I had some I forget, some Simpson socks on, he said ‘Oh that’s okay, you can join the silly sock club with me and he showed me his socks.

And then after having that we went back, I think another, about a week later and I had to have the mask made for radiotherapy. I can remember having that done, they put this stuff on my face and it was all cold at first, wrapped bandages round my head then with this on and it all went really warm. And then they took that after that because it was set and went back another week or so later and they made this plastic mould of my head and that was kind of scary that was, when you saw that. I was trying to think what film, something I think like Total Recall or something like that in there which was, its scary. And I can remember them to put all sorts of different marks on the mask and that was horrendous because I had to lie down on a bed in this mask for about an hour and a half, face down and I was hot, I was horrible and warm by the end, and I was in tears, my nose was all running and stuff, it was horrid that was.

Because I had to lie down for over an hour and a half to put all these little marks and all sorts on the, on the plastic of the mask to align it with, for when I had radiotherapy and lying down on your stomach for an hour and a half when you’re not feeling well anyway is…

Mother’And it was sort of…

Son’Summer.

Mother’Summertime yes.

Son’It was early August so warm as well, it was nasty. But then I started radiotherapy a few days after that and that was, radiotherapy was strange because you, you don’t feel anything but then you get the effects of it, the tiredness and your hair falling out.

I had radiotherapy for five weeks. And it involved just laying on a table with this machine that goes, comes over you and because my tumour was in my head it came down to both sides and I had three bursts of rays. One, the ray on top was more intense than the ones on the side and I had a mask made for the, to get the laser in the right place where they put the lines all over.

Okay, where was the tumour located?

It was in the middle of my head.

And you had to wear that mask?

I, I had a mask making session where they made the mask with plaster of Paris and they made a mask out of that, and then I went for planning where I had to wear the mask for like two hours, on the table where they planned all the lines where they were going to put the rays in to kill the tumour.

So and for, you had to wear that mask?

Every time I went for radiotherapy. I had to lay down face first.

Lay down face?

Lay down face first, I was like that.

Okay.

On the table.

And how often during the week?

Every day except for weekends for five weeks.

About going for radiotherapy? No because all the nurses there explained what was gonna happen and they were with me all through the stages like they were there when you’re getting on the table and they said ‘are you okay?’ and then they left, because they can’t be in the room while you’re having the radiotherapy. And they could watch on the camera so if you need any help you put your hand up and they would stop and come in. So you’ve got someone there all the time if you need some help. Just don’t be afraid to ask.

So you had the support you needed.

And for how long was the session?

I, it took I think about an hour maybe, no about 20 minutes I was actually on having radiotherapy because they had to line me up but the actual like when they were zapping the tumour took like a couple of minutes.

I see.

Just for three bursts so its just aligning you and getting it in the right place, that takes the time.

Mother’And the consultant made time the next day and said, ‘oh yes, you know, ‘come up, make sure you stay behind after radiotherapy and I’ll show you. And she put the x-rays up on the, I suppose they were CT scans, on, on the light so that we could see and showed us this big mass and said, ‘it’s about the size of a plum. Shes very matter-of-fact, how she described it. It was the size of a grape when we first had it diagnosed but 6 weeks later it was the size of a plum. And she just said very matter-of-factly, ‘but it’s gone now. And we were all amazed after sort of 10 sessions of radiotherapy, you know, ‘you mean it’s gone?’ So she said, ‘yes, it’s, it’s one of the best tumours, if you’re going to have a brain tumour it’s the best one to have. It’s the most sensitive to radiotherapy.

Is this the germa ‘?

Son’Germinoma

Mother’Anaplastic germinoma. ‘And we would fully expect it to have gone. Therell be a lot of debris left but the actual tumour itself no longer exists. And we were absolutely amazed. In fact, I think [son] cried [laughing]. He said, ‘how can it go so quickly?’ He was quite emotional about it and I was just gob smacked, you know, that this big thing, how on earth can it disappear? I mean you can’t take it out. But the radiotherapy was so effective, so that was a big, a big day to think that, that tumour now was not the threat that it originally was. You know it was threatening his life and then all of a sudden after 10 sessions that it was dead. So that was quite a celebratory weekend [laughing].

And how were you feeling at that time?

Son’That’s the time that I can’t remember anything. I can’t, I think it’s, like when I, when I, I come, when I went beforehand, a couple of months ago, before I was, when I went down to [place] and when I got back out of the rehab. I can’t remember anything. Literally, it’s all gone.

Where was that area?

It was in the, in the neck area on one side, on my right hand side. So that was where it had mostly been but obviously spreading down to areas of the chest as well. So these sort of new CT and PET scans had showed that, you know, all the chest area certainly had been cleared up and there were only sort of limited levels left on the neck and they were just sort of what everybody has basically but he, just to be sure we kind of had three, three weeks of Hodgk-, three weeks of radiotherapy just as a kind of, final say on the matter and hopefully blast it all out. Obviously, you know, radiotherapy goes with chemotherapy so you have to have the full experience I suppose [laughs]. So yeah, after that I was, I was, [sighs] I could see his reasons for doing that and I was quite thankful for that, that, you know, I wanted to be sure that it was all gone and that I was, you know, after this I could just approach life again without a worry that, you know, oh if wed have only done that, I wouldn’t be, you know, six months down the line. I mean I was still going to be worried that it might come back perhaps, my feelings were still going to be like that when I got to that area but it wouldn’t be through my own fault by saying, you know, ‘Oh I should have had radiotherapy. I wasn’t going to kick up a fuss saying, you know, basically saying ‘Don’t do it ‘ ‘cos I, ‘cos you know after going through six months of chemotherapy you think, oh three weeks, easy [laughs].

As soon as the kind of lead blocks that are put above you to, again, combat the rays, you can’t really feel anything from the, the actual ray itself. You’re kind of aware of it happening but only because you’re forewarned saying, ‘Ok, it’s about to come on. And you kind of hear this buzzing and that’s about, that’s about all it is really. It, it, it wasn’t anywhere near as frightening as you perhaps think it’s going to be from the name of it. And perhaps the thought of, you kind of get this science fiction view of perhaps big, bright red rays coming down on you it, it, it’s nothing like that in reality unfortunately [laughs]. Be quite exciting if it was but [laughs] unfortunately it’s just rather dull. But yeah so, it’s, it, literally the only problem with radio is just the mundaneness of getting there every day and waiting your turn and kind of seeing all, all the other kind of people queuing up before you and that, that, you know, it’s obviously no real concern in the, in the larger state of things.

November 2011 I found a lump behind the back of my knee and it was confirmed my cancer had returned.

I then underwent surgery to remove the lump in December 2011 and then radiotherapy in February or March 2012.

but for this one they said it was, they thought that they could easily get this tumour remove it with surgery, and then give it quite a lot of radiotherapy so I went in December two thousand and eleven, for an operation to remove a tumour from the back of my knee, the surgeon thought hed got it all and then in February 2012 I started 30 sessions of radiotherapy, obviously could, it’s on a kind of isolated limb, the doses of radiotherapy they can give are quite big compared to what they could give for example if it was next to a main organ. So they gave it a good zap of 30 sessions of radiotherapy I had which involved going to the hospital each day, an hour there, having the radiotherapy. It took about half an hour if they were on time, and then an hour back so we did that Monday to Friday every day for six weeks.

I did that, the symptoms of that were just my left leg started to get really stiff,

These are your side effects of the radiotherapy?

Yes it’s the side effects of the radiotherapy, my left leg started to get really stiff, cos there were tumours in the back of my knee so it was obviously, that’s where your leg bends and as well the skin started to get quite sore around the area and as well I lost all the hair, so I had just a bald patch on my leg. It looked a bit weird.

When I had my last chemotherapy they – you know – he sat me down and said, “It’s not worked anyway. Well refer you for radiotherapy, but were not going to make you any promises”. He referred me again to like an adult radiotherapy doctor, who had a waiting list of like six weeks and again my Mum stepped in, and she wanted me to see the teenage consultant. Because the consultant I’d had wouldn’t let me go on the teenage ward, because he said they didn’t have the expertise to deal with my cancer. So he – so my Mum went to see the teenage consultant, and asked if he would see me, kind of, you know – really pushed it. And hes a radiologist as well, so he could, you know, he could do the radiotherapy. So he said, “Yeah I’ll, you know, I’ll see her”. So he did my radiotherapy, and basically he was the one that saved my life. He didn’t make me wait for ages. You know, he took me in, did the radiotherapy, and got me out again. And he got rid of it.

Can you explain in more detail what he did, how many sessions of radiotherapy?

Well the tumour was still quite large. So I had six weeks of radiotherapy. You have it five days a week, so that’s like thirty radiotherapies, and first of all, when you go in for your radiotherapy, you go into like a, a simulator, where they simulate. And they put little drawings all over you, where they’re going to zap you. And they give you a little tattoo, just a little ink and a pinprick, and it shows where they’re going to direct it, but it’s just like an x-ray really. You just lie on the bed, and it’s all nice and

So, so I started on the radiotherapy and the intensive care unit was at one end of the hospital it seemed and the radiotherapy suite was at the other end so I remember being taken there on, on my bed and sort of I had to be bagged manually and there were all these various people around me. And sort of there, there in the corridor theres, on the ceiling in this particular hospital they’ve got paintings.

But initially I was too ill to have a radiotherapy mask made so this meant that they had lots of video cameras installed to watch me when I had the radiotherapy and I basically had, had radiotherapy through my brain and spine but I had my head sort of bandaged to the table basically and they just did the radiotherapy like that. So I’m very luck that I’m not sort of more intellectually damaged or in a worse, a worse sort of state than I’m actually in now. Because I had 57 in the end or thereabouts.

57?

57 doses of radiotherapy.

For some time. And then I finished that and the, I had, my appointment was, when did I finish that, just, I think it was, I must have, that was March 1997. That I finished and I had an MRI obviously to look at what had happened and, and the tumour had been shrunk.

Okay.

That, that was good. I was saying before about the many sessions of radiotherapy I had and someone that I came into contact and became a friend, he calls me Heinz now because of the number of radiotherapy, 57 varieties and all that kind of stuff. Yeah ha, ha, ha and I don’t pay out for hair cuts now either.

But then I went, I returned home and obviously you know radiotherapy does actually leave you pretty flat, just very fatigued and so on and so forth. So I recovered gradually.

Okay tell us, tell us about your tips?

Right. Relax while you’re having radiotherapy, just watch telly, chill out and sleep as much as you want. Just enjoy it.

Instead of using your normal shampoo on your head when you’re having radiotherapy use baby shampoo like Johnson’s Baby because its gentle and delicate for your thing, it doesn’t infect it or.

Ask for anti-sickness tablets off the radiotherapy staff because you feel sick during it and if you take them you won’t.

I don’t want to read that one.

Drink ginger beer if you feel sick. Someone said it helps.

Cut, cut your hair short to Grade 1 so people don’t notice its fallen out so you, it just looks the same just shorter.

If you, theres a funny smell if you’ve got a brain tumour when the rays are going in so take something like Olbas Oil on a tissue and put it underneath your mask so you can sniff it and it makes the smell go away, but you can still smell it.

Get plenty of rest and sleep.

Talk things over with your family and friends so they know what’s going on and don’t feel left out.

Carry on as normal as well. Don’t do anything like you wouldn’t do or stop doing things.

Have a drink before treatment and have a drink after treatment because, because you get dehydrated.

But I mean after a couple of weeks I was fine, I was kind of back to school, I went back to for result, and he said that some of them were pos, some of my glands were positive some were negative. And that he was worried that because some of the glands were quite full, that they might have over flown with the cancer cells. So he suggested, after talking with other doctors that I had radiotherapy. And this is in the summer of 2002, so May/June time. But he kindly referred me to [place] which was a lot closer so I wouldn’t have to stay in [place] for five weeks [laughs] ‘cos that would be a bit mad. So I came down, I was referred to people in [place] who made me a radiotherapy mask which I found quite funny at the time, because they had to put a mould all round my face and it was just quite bizarre after seeing it, that it was like my head and neck that was all moulded. And they also marked a little tattoo so they could line me up with the radiotherapy machine. And I started a five week course of radiotherapy. I went in five days a week, and I had the weekends off.

You stayed in hospital for five days or?

No, I commuted and most days I went back to school for not the whole day. I kind of went back for a couple of hours and my dad would pick me up. But I, you know, I kind of wanted to stay at school. I didn’t want to miss out. It was first year of GCSEs and I, I thought it was very important I be there and see my friends and stuff. So I’d go in the morning with my Dad. I’d have radiotherapy on two different machines, one which did the neck and then one that kind of was right behind my ear, just kind of looked a bit like a cup actually [laughs], and they did that on my ear. And then my Dad and I used to go and have a fry-up afterwards as a treat. So every morning I’d have a big fry-up and go back to school, which was fun, I liked that.

It made me very, very sleepy. I’ve always been a particularly sleepy person but I was quite quiet and slept a lot if I came home from school I’d, I’d sleep on the sofa for the afternoon. But I was fine apart from that, I wasn’t sick, I wasn’t ill particularly, I didn’t you know, because it was on my neck obviously I didn’t lose any hair I wasn’t. So I had quite a positive experience of that.

So I was really angry at this stage because I’d got this dream job and thought I, everything was going ok, and then obviously had to go back to hospital. So I went in that day to find out that, I mean, they wanted, they wanted, they didn’t want to see me that day, they wanted to wait three days before I could go in but I insisted. I wasn’t going to sit there for three days not knowing, so I went in and they told me that the tumour had started to grow again, only, only by a centimetre, but it was still a centimetre more than they were happy with. So I had to start a four week course of radiotherapy so they told, they said to me, ‘Oh, it’s going to be a breeze, you’ve had chemotherapy it’s going to be fine, it’s going to be easy. So I thought, well you know, they must know they’re the doctors not me. So the next about, the next sort of week I had to go for various appointments where they measured my body, they, they had to make shields for my lungs and for my mouth so that the radioactive cells didn’t get into my lungs or into my mouth at all. And then the following week I, I had actually booked to go on holiday, would you believe, so I managed to escape it for a week and I had a lovely time in Cyprus on holiday, and came back and it was all systems go then. I had to have chemotherapy every day for four weeks, not at the weekends just in the week

Radiotherapy?

Yeah, sorry did I say chemotherapy? Sorry, radiotherapy and it started off fine, used to go in just literally lie on a bed, be zapped, would take about ten minutes sometimes longer because they needed to get your body in position so that they get the rays in exactly the right place every time. Towards the end sort of the last week and a half it was absolute hell. All my skin peeled off from under my arms ‘cos they did, they gave me the radiotherapy from the basically from the top part of my stomach to my mouth. So I had raw armpits that were bleeding and all the skin on my neck came off as well and my mouth was really dry and I couldn’t eat properly because it I could literally feel it burning in my chest. And I remember I, I still, I was still trying to go to work throughout this ‘cos I thought, you know, it’s going to take my mind off things if I can go into work for a few hours and I remember sitting there at work one day and literally feel the tumour shrink and it was literally it’s like, I mean at the time I didn’t know what it was it was like having a heart attack or something. It was like something was pressing in my chest so that was a really bad time. But I, I got through it, finished the course of radiotherapy. About a week later all my skin started to heal and about two months later I started to wear deodorant again, which is one thing I never ever thought I’d do because if you could have seen how red raw my armpits were, I couldn’t have imagined anything worse than putting perfumed, you know, products on, on it. But, but it, but it did go, it did clear up. I’m still actually on tablets for indigestion because I get very bad burning when I eat, which is caused by the radiotherapy. But scans have showed since then that it’s, it’s ok. Again, it’s still slightly out of shape but I mean this is a couple of years on now and so far so good. I’m at six monthly appointments and everything is looking good.

He was more of a radiotherapy doctor, and then they just went off there for the radiotherapy, which they thought was the best, the best idea at the time. So, that was good.

Okay, so you had radiotherapy first?

Yeah, six weeks radiotherapy.

To the neck?

Yeah, it was all the neck, so, so it was not too bad, but you know [laughs] you do get the side effects. But-

Ah, like what?

Well, I think they describe it as like a sunburn to the particular area. It’s all very, like a specific; they are very accurate with it. But I lost my voice towards the end of it, so that was quite hard at college, and it was a bit itchy, bit sore, but nothing too major.

Did you lose your hair?

No, not from radiotherapy, I didn’t. No, it was just going in every day, just losing your voice a bit, a bit red, but nothing too major, so’

Okay, so it was a rash, a skin rash?

Yeah, it was just a little bit red, a little bit peely, just like sunburn.

Did you feel tired?

Not too bad really, no. I was still training every day in the gym when I could.

Okay.

Yeah it was at my fittest point I’ve ever been, I think. So before it started I was in the gym everyday training for something I was doing at the time. I think that helped, just being that fit. Then you just keep it going through it, and came out the other side, just completely fine, not too bothered at all.

Okay. And you were sixteen at that point?

Yeah. I was sixteen then.