In 1995, in April ’95 when I was just 17 my birthday’s in March I was diagnosed with a brain tumour. That’s wrong sorry I, when I was just 17 I began to have the, have strange symptoms of illness. I had, I couldn’t see properly it seemed as if that if I looked at a certain thing in the sky for instance like a bird it, if I looked at it sort of sideways on I could make it disappear. Or if I was reading a sign on, on a wall or a road sign some of the letters would be missing and I would just see a blank sort of area.

And then more scarily than that I started to see, when I looked at peoples faces I would only see half the face and the other bit would be just a blurred blank really. It was very frightening. I gradually got worse.

I actually went to see my local GP and he said it was growing pains and sent me away on my bicycle home, meanwhile I got worse and because of the visual problems that I was encountering I went to see a specialist eye person and they looked at my eyes and did various tests and saw that the discs as they’re called at the back of my eyes were somewhat lighter than they ought to be.

And then they referred me on to a hospital in London where I had a, an MRI scan and that confirmed the presence of a brain tumour. I was really unwell I, I’d gone from healthy to, to this state of ill health in a very rapid way. I’d been quite happy at school, I’d been successful at school both in terms of doing work well and passing my GCSEs and, and also you know I, I enjoyed it and went to the gym and led a healthy normal life.

I was out with my friend on the 9th of September 2001 and I collapsed on my micro-scooter going down a hill, blacked out and I was taken to hospital by ambulance where I found out I had a brain tumour and they contacted Hospital, oh, okay. And they took me there and they did some tests on me to find out what sort and I was rushed in to have a, in to theatre to have a outside drain.

Well I had an emergency drain put in to drain the fluid off my brain so. And then I was, it’s written down. I’ve gone blank. I was gradually turned off the life support.

Did you notice anything before collapsing?

No. I didn’t.

Did you feel ill in any, in any way?

No, the only, looking back on it I have only the symptom, I was walking to school and I was like drunk, I was like going all over the place, falling off the curb. It was just like acting a bit.

How long before?

It was the day before, two days.

Okay so it was very sudden?

Sudden yeah.

Son’I was about 17 ‘ and then I’d just come back from, from University, hadn’t I? For the day and then I didn’t feel very well so I went up and had a, had a bath an early night and I then just stayed in bed the next day, didn’t I? And then I got up, I remember this, and I went downstairs and I went through into the kitchen, into the dining room and immediately, just as soon as I went through that door I then felt this massive rush to be sick. And I looked around to just try and go, go to the toilet, I was ready, ready to run so I went to run and I fell over and I just ended up being sick on the floor. And then I, I, I don’t know what I did, I think I went into the kitchen, I went into the kitchen to sort of like finish being sick and then I was being sick and then I stopped after that, wiped my mouth and that and then I went into the, went into the lounge to phone Mum and say I’ve, I’ve been sick and everything and then I just felt really ill so then I just went to bed for the rest of the day. And then I think it kept up like that for a few days, didn’t it? I kept being sick because I was’

Mother’You had about a fortnight and you were getting worse and worse. Headaches started, sick a lot and he was complaining of a, a rushing sound in his head.

Son’My ears.

Mother’In, in his ears.

Well it was just a normal Sunday, I’d just had Sunday roast and not but threw up and didn’t feel very well at all so went to bed. And then I was off for the rest of the week at school just constantly throwing up and even though there was nothing to throw up just continually throwing up. So I went over to the local GP a few times and they said ‘Well just keep an eye on it for the moment because theres nothing that we can see. And then it got to Thursday, the Thursday morning I went back over to the GP, still been throwing up constantly and things, not being able to eat because whenever I ate just threw it back up again. So he had no idea so they referred me up to the local hospital where they did all the like peripheral vision tests and how your reflexes are and things and then sent me for a CT scan. The results came back the Thursday night and it said that the results were that I had a brain tumour at the back of my head where the spinal column meets the skull.

Did you have any other symptoms that you could recall?

Not, not that I, not that we knew of at the time because it kind of was a gradual thing but when we look back through pictures from about two years ago then as the pictures get further on closer to actually finding out my head slightly like tilts to the right and you know it’s where the pressure was building up. My body obviously just naturally trying to relieve pressure and like a week before the Sunday where I was throwing up I had my Gran’s seventieth birthday party and theres pictures on that where now you can see my head is like this but in the pictures my head is right down like that, it’s quite plain [laughs] to sort of see but obviously at the time not knowing it was just like that.

No pain?

No, no, no pain just like I said just the head like that.

I guess it would probably start in Christmas 1993. I was about twelve, twelve years old. Maybe November, December I started having back pains and aches and quite severe without really knowing what it was. I remember in January then. We didn’t do anything about it, might, might have gone to a doctor but in January I remember being in school one day and I started having severe sort of pains in my back and not sure what it was. It was right at the base of my spine. So I mean I got to go home early from school and going to see a doctor in a clinic not in a hospital. And I was given, initially I was given a corset. I was given something to, it was a muscle. They assumed it was a muscle problem.

Within days of me, I think it was late January 1994 and within days of that I had gone into hospital. And they again they didn’t know what it was so I was actually put on traction for about a week maybe more. And that was just to see what would happen. Nothing happened obviously. And then the decision was made to have a biopsy. So I think that happened probably February some time, mid February I had a biopsy to find out what was going on.

It turned out that I had a tumour. I had two small tumours at the base of my spine just slightly to the left right at the base of my spine. At that time I mean I was so young it, I wasn’t really given the whole picture in terms of the details of what exactly what it was. I didn’t learn that it was an Ependynoma until a long time, well until recently, the last couple of years really.

About 2001, I first found out. I had a swelling in my neck, about there, it was pretty big, from the like the gland is swollen up, and I went to the doctor’s, emergency doctor’s one night, and he goes to me that it’s a, a throat infection. So he give me antibiotics for that. I had antibiotics and the swelling went down, and after about two months it came back again, during the summer, during the summer holidays, and I went back there, and they gave me antibiotics again, and they also told me to go to the doctor’s to have a, a throat, like a test and stuff, like my GP. And he referred me to the [place], where I had, they thought it might be TB or a throat infection, or something with asthma or something, so I was in the Asthma Ward for a couple of weeks, and they did a biopsy, because they couldn’t figure out what it was, and they cut the side of my neck there, took some blood out, and they also said it was a pretty risky situation because of the nerve down there that controls the whole of my left side, and it could have been dangerous, it could have killed off my whole, like, left side, paralysed me. So it was a pretty dangerous operation. But then I had that done, had the biopsy taken out, and when we found it was cancer, Hodgkin’s Disease, and when I had X-rays done, like a CT scan, they noticed I had, also had one in my heart, so one was there, like a banana shape around my heart, of tumour. And that’s what made it hard to breathe as well sometimes. There were no other symptoms from it, just the two, or loads of little lymphoma in my neck, swollen glands in my neck, from the infection in my heart. And that’s what it was.

If you start when you first suspected that something was not right?

Well, I was just at work and basically I felt like I’d pulled my back and [sighs] next day or two it was just getting worse and I just thought nothing of it so I went to the doctors just asked for some more powerful painkillers because it was, the normal paracetamol wasn’t working, and what it was, was, I took the painkillers and they were just doing no good. I thought, well, I’ve really damaged my back this time, I’m just going to have to take it easy at work.

So I took it easy and went to my doctor’s again and he put me on different types of painkillers till we found something which actually worked. Then I decided to actually change jobs for a much easier and lighter job and when I got what, when I, when I got home from one of the jobs, my back completely went and I thought well, I tried chiropractors and they, they were sorting out my back and after that my back went again.

So went to the doctor’s and just said, ‘Look, it’s, it’s just not sort of getting me, back’s completely going. We, we tried more painkillers ‘cos we, wed had x-rays and it showed nothing up at the time, and I’d say about four months afterwards I got severe stomach cramps just after a night shift. And it was quite an intense pain so I, I wasn’t, drink, when I tried drinking water it was coming back up and what have you so when I went to doctors, he rushed me straight to hospital, and stayed in there overnight, and then went for like a I think it’s and IV x-ray when they inject dye into your blood and it just showed up like a, a little, hotspot, and a few weeks later I got a appointment for like a for an MRI scan at [place] and it showed a few more hotspots so we found out by going to another hospital to get a biopsy on my back and when I was going for that it’s very easy, you know, easy to come to terms if you think well, must be something serious at that point if it’s a hot spot, what can it be? And what if it’s so, so things flash through your mind. That test proved inconclusive and they wanted another bone scan so I went into the another hospital to have one done on my hip. And that proved that I had Burkitt’s like lymphoma.

So when did you start having symptoms?

When I was as I used to go to the gym quite a lot up at Healthland based in [town] city centre. I used to do a lot of training there. And then out the blue I got a cough and it was a really bad cough. It wouldn’t go away. Whenever I used to get a cough and I used to go to the doctors I just used to train and try to get out of it that way. But then I felt something was wrong with me so I went to the doctors and asked them for medicine. And they gave me some you know, some medicine for the cough and that but that didn’t work, it didn’t work so I went back to them and I said, ‘I’ve never had a check-up in my life either so I’d like a check-up as well.

So they took my blood and they sent it off to the hospital and then they called me back. They go, ‘You need to go to the hospital. You need they, they want you to come in so they can do a bone marrow test on you because you’ve got too many white cells in your system and they’re immature. Theres a lot of reasons that it could, you know, could be behind that but they want to, you know check you out. So I said, ‘Ok I’ll go.

Well I was diagnosed when I was just about 15 and a half with ALL leukaemia which we later found out I had the Philadelphia chromosome as well which can’t be treated just by radiotherapy it has to, you have to have a bone marrow transplant basically.

And, but when I, when I was first diagnosed it was kind of, it was kind of weird because my parents were away for a little while and I was staying with a friend and I was just getting headaches and I had like an ear ache, I thought I had a cold but I was getting out of breath really, really quickly and at first I thought it was just because I was unfit, like I wasn’t doing much exercise and stuff.

And my parents came back from holiday and I was really pale. I went down to the doctors and he gave me a blood test and didn’t think anything of it. First, first of all we went and had my eyes examined because I was getting headaches and the person who did my eye test said that I looked like I had jaundice, I was really pale and it, a bit yellow.

I think we first started noticing something in December 2001. And I had a, a really bad cold and chesty cough and stuff and I was just walking up, up, up my drive and all of a sudden I had a, a pain in my thigh. And it was a really bad pain and I was like, ow where the, wheres that come from. And I, I told my Mum and she was like it’s probably growing pains or something like that. So I, I thought ok well if. I let it go.

How old were you?

I was thirteen or I remember. And then it started to get a bit worse and I was getting really worried so I said to my Mum, ‘Look can we go to the doctors to get it checked out?’ So she said, ‘Ok. So I was taken to my local GP and he examined it and thought it was some sort of hip displaysia and that it was referred pain so instead of feeling it there it was in my thigh. So he said well if it is this we need you to go to hospital. So I went to hospital and they did some X-rays and routine blood tests. And they said, ‘Well these are all fine but there is obviously something wrong so we want you to stay in for overnight observations and stuff which upset me a lot because it was the first time I’d actually been in hospital on my own because my Mum had to, couldn’t stay. So she had to go home. So I was very upset and emotional and I was put on to the Children’s Ward. And basically a nurse just kept, kept coming in and checking on me. And they did several tests and stuff. And then the next morning the consultant came in and said, ‘Were sorry weve, we know that your white count’s elevated but we don’t actually know what’s wrong. So come back in ten days if it hasn’t got any better and well see how it goes from there.

So over the next ten days my leg got much worse and I started to feel really tired and coldy and it was terrible. And I got like a pinprick dot, a red dot, rash on the bottom of my left leg. And I noticed it in the bath and I was like, ‘Oh my God. So I got out of the bath rushed to my Mum and was like ‘Mum look at this what, what is this?’ And like because I thought it was meningitis so I was really scared. And my Mum was like ‘Oh it’s probably just a heat rash. So that was ok. But of course I was a bit like oh I don’t know.

So we went back to the consultant’s clinic and he was, he looked at it and was like ‘What’s, what’s this? Wheres this come from?’ And we were, we don’t know. It just appeared. And he was like ok we have to do some serious blood tests.

Well my symptoms really began one, one night when I was, when I was walking home and I had, and I, I ran a little way and I, and then later on that night I had a massive cramp in, in my leg. It was really painful and, and left me, a, a little incapacitated for a few days. I mean I thought I’d, the doctor, I and the doctor thought that it was just, I’d just pulled a muscle. And although it was painful I never imagined it could be anything like cancer.

Over the next few months I, I experienced some pain in it but I still continued walking four miles to and back from school a day so it couldn’t have been that bad, just the fact that I thought it was a torn muscle just made me, made me carry on even though it was painful. But then gradually, sort, this began in October and by the spring it was getting worse even though I would have denied that at the time. And, and, and even to sit down for long periods of time left the leg feeling, feeling very, very sore. The whole area along the bottom of the leg was numb. Along the top of the leg was numb and I was just getting pains all up and down it from my awkward posture that I’d adopted to compensate for it. And people would comment that I was walking in an extremely awkward, awkward manner although not as many people as you would have expected which is all, which is typical. Then, then around April and May it was really, I was really beginning to get very, very tired and, it was, I’d, I tried not to let it interrupt with my school work as I was doing four a levels at the time but, but it, I couldn’t, I couldn’t help it and, and ultimately I had, I was going to sleep quite a lot earlier and just getting really, it was really just wearing me down.

I was sixteen years old and I was, I’d just finished school, my GCSEs. I was having pains in my shoulder for about, well from a few months before that so when I was having, doing my GCSEs I was in quite a lot of pain and I wasn’t sure what it was and I went to the doctor several times and he said it was things such as muscle pain, my tendon getting trapped underneath my bone arch, and then I started my A Levels and I was in even more pain so I went back to doctor’s again and he sent me for physio and I started the physio but I found that it wasn’t helping and I was in a lot more pain and, and I wasn’t sleeping at this point every night I was in a lot of pain and I was having lots of painkillers, so I went back to the doctor again and he just said the same thing I he gave me a cortisone injection because he thought it was something to do with whatever it is [laughs] that you have cortisone injections for I can’t remember, so that didn’t help still so I was carrying on with the physio and then one day my physiotherapist she noticed a lump on the back of my shoulder and she felt it and she got her colleague to have a look as well and they didn’t know what it was so she phoned my doctor and just said that she thinks I should go for an x-ray. So a couple a days later I was booked in for just a normal x-ray and I went along and then I went back to school and that afternoon my Mum got a phone call saying that they wanted me to go up to Hospital in to see someone.

Right, well, I was sixteen when it started. I think I was just looking in the mirror one day and just noticed a little lump on my neck. So I was just looking at that, had a feel of it and thought, “Mm, this is odd.” Mm, just kind of left it and looked at it for a few – probably a few days, maybe a week, and then just started asking a few friends and seeing what they thought about it. Mm, and then they said tell your parents, so I told my Dad and then off we went to the doctors. So that was how that started.

And how was the lump? Was it of a different colour, or’?

No, it was all the same colour. It was just underneath the skin. You could kind of wobble it around. I didn’t know if it was just, you know, a new muscle that had turned up or –

It was wobbly?

Yeah, a little bit. It was pretty solid, but a little bit wobbly.

It was painful when you touch it?

No, no. I could poke it around or move it or whatever. It was quite small, but no pain or anything.

So you went to the doctors?

Mm hm.

With your dad?

Yeah, I went down to my GP with my Dad and he referred us straightaway to a specialist in [place] in the hospital, so that’s where we went there. He probably thought it was more of a cyst than anything, so that wasn’t too worried or anything at that point.

Right it was 16th April I found the lump. I woke up, not in a great deal of pain but more of a dull ache round the tummy area. I thought that’s strange. I rolled over and I felt uncomfortable. I couldn’t tell where it was but I just felt uncomfortable. Then I looked down and my testicle was swollen. Now I thought you know was it had I knocked it at football or sat on it wrong, I did not know you know. But then I checked it and straight away there was, I just felt this large lump at the bottom of the left testicle and straight away cancer, what else could it be you know. That was my worst thought. So I woke my girlfriend up, I said “Look,” I said “I’ve found a lump,” she was a bit dazed you know “What do you mean?” I said “You know feel, I’ve got a lump,” and you know was getting not upset but just a little bit sort of you know hysterical. So came downstairs, told my Mum and Dad, they said you know “What do you want to do?” I said “Well I need to you know get it seen to straight away.” Unfortunately it was Easter Monday, bank holiday so you know the chances of seeing anyone were pretty remote. But I managed to get an appointment with the local hospital pretty much straight away, I think it was 11 o clock I rang, 2 o clock I was in seeing a doctor.

I was 15 years old, it was October 1994, I’d been at home and I’d found a lump on my testicle. And I’d probably had it for may be 2, 3 weeks. It wasn’t really causing me much pain but it was certainly, I thought it shouldn’t have been there. I wasn’t so much worried about it as concerned that it shouldn’t be there. So I spoke to my Mother and she obviously said that she wasn’t particularly an expert in that field of body matters so she, I spoke to my Father and he said that it wasn’t right. So I decided to go the GP with it. Saw my GP and he sent me away for some tests and an ultrasound the same day. So I obviously realised then that it was, it was something that was quite serious

Was it quite easy to feel the lump?

It was yes, it was definitely obvious that it was there. It was a reasonable size, probably slightly less than a quarter of the size of the testicle at the time.

And how long had you, how long had you been aware that there was something wrong before you decided to talk to anybody?

Between 2 to 3 weeks really. That was what I was remember as the time of thinking about may be I should do something, may be I shouldn’t, but I’m not too sure from before that unfortunately.

Well in 2001 I was involved in a car accident with a lorry and I was injured in the car accident. And a year later I still had problems with my back, so I went to my GP and he said I should go for an x-ray to check there was nothing wrong. I went for an x-ray at my hospital near my university and they said they’d found something wrong with my back, but they’d also found something above or in my left kidney.

So I went back, this was around Christmas time, I went back after the holidays for another x-ray and they’d seen something again, they didn’t think it was the x-ray machine, they thought it was something to do with my kidneys. So I went back again and I was sent for a CT scan, and the CT scan showed a large mass above my left kidney which had calcified.

So from there things happened pretty quickly, I went to see a consultant surgeon a couple of weeks after I’d been for the CT scan and he said he believed that the car accident had caused me to have a blood clot in, above my left kidney and that whatever, it needed to come out; because it was fairly large and it shouldn’t be there. So from then we waited, I went through and had another test to check my adrenalin levels so I had to do a couple of twenty-four hour catecholamine tests. These showed extreme, extremely elevated levels of dopamine so I had to again repeat the, the catecholamine tests several times and the results were the same.

I went in for surgery and everything went well, I had an open adrenalectomy, where they removed my left adrenal gland. Now previously nobody had ever mentioned adrenal glands to me, I didn’t even know I’d got an adrenal gland [chuckles]. So it was pretty, pretty confusing. The morning of the surgery they said you know, ‘You do realise you’re having your adrenal gland taken out and you might lose your spleen?’ Well every, everybody was sort of very confused as to what we were, what was happening but I, I did have my adrenal gland removed, I did have a bleed on my spleen but that, that stayed intact luckily.

When I came round I’d been in theatre for quite a while, I came round and I was very poorly, I was in, the high dependency unit where they said that I’d, they’d removed a large mass from my left adrenal gland but we weren’t given any other further information. I was in hospital for a further two weeks and at the end of two weeks the results came back from the pathology lab saying that I’d actually had a cancer that was, that was termed as a ‘ganglioneuroblastoma’ which is very rare as I’m led to believe. The surgeon actually had never seen anything quite like it before, I was quite a novelty amongst the hospital, everybody knew me and my diagnosis.

How old were you when you start noticing?

Noticing the symptoms, well I, when I was about, I was just seventeen and I went away to Nepal, and I came back with a parasite called Giardia, which sort of affected, which is a parasite which lives in the small bowel, and so after that for a long time I had Irritable Bowel Syndrome and I had, went off for a few tests, like a Colonoscopy and that sort of thing, and they, they sort of said, ‘Oh obviously the Giardia’s sort of made Irritable Bowel caused sort of Irritable Bowel Syndrome. So that was sort of really, the, initial thing, within what happened and then I went to University and I started University in September of 1999 which I would have been eighteen and for my first year at University I was fine, I had a nasty, like in hindsight I had a nasty cough,

For, for the most of my first year because it’s first year at University you sort of think, ‘Oh I’m tired, it’s Freshers Flu, it’s. You know that kind of thing, and, and I had some problems with the Irritable Bowel Syndrome but really nothing any, anything major at all, I didn’t sort of take any medication for it anything like that so it, so it just, just let it all be then I came home for the summer by this time it was the summer of 2000, and I was working just part time over the summer before I went back to University, and just one night after my, it was must have been just before my nineteenth birthday I had these sort of really nasty stomach pains, it was sort of almost up under my ribs, it’d sort of feel kinda like cramps almost that would come and go every few minutes, it was just overnight really, kind of unpleasant but by the next day I was feeling fine again and just assumed it was a bug or whatever and went back to work. And then six weeks later, I had the same sort of cramping pains and but that time I was also really violently vomiting and this was during the night as well and it sort of kept going and by the morning I was sort of really exhausted and had nothing left so we called the Doctor, just thinking I must have a bug or something and so she came out to see me and sent me to the hospital for an ultrasound scan with suspected gallstones and she sort of said, ‘Well I don’t really think you’ve got gallstones but, we could we should try, try and check for everything.

I was, I think, about 14 and I was on holiday with my family, and just brushing my hair, and I, when I was brushing my hair I felt a mole behind my ear, that was never there before because I, I would have noticed it before when I was brushing my hair. And it was quite big and so I was a bit worried, and my brother and sister suggested that I go see my doctor because it was quite big considering that it was new.

So I went to see my GP when I got back and he had a look at it, and he was very much, ‘It’s fine, theres nothing wrong with it, just leave it, keep an eye on it. But as far as he could tell there was nothing wrong with it. And then I waited a couple of months and I was, still wasn’t happy, I went back to my GP who agreed to have it taken off, so I was referred to a hospital in [place] I think, where they took the mole off and just before, like a couple of weeks before my mole taken off, which was in October half-term, I remember being in school and it was itching and flaking and half of it fell off in the lesson, into my hand, and it started bleeding and I thought that this isn’t really right but didn’t pay much attention to it because I, I knew I was having it taken off.