So my dad actually insisted that he come with me to the doctor that day because I think my parents were a bit worried by this stage because I’d, it was some really strange things that was, that I had basically. We went to the GP, it was about, it was an afternoon appointment, it must have been about 5 oclock and we told the GP all my symptoms, and he could see from my notes that I’d been to see two other GPs in the previous weeks and they’d just given me antibiotics. And he asked me to just take all my clothes off and stand behind the screen and he came to look at my body. Now he saw that I had these lesions mainly on my legs but he could also see that I’d actually been scratching my back so much that I had scratch marks like an animal, a wolf or something had attacked me with these big claw marks, which I’ve still got because they scarred unfortunately. And the doctor was baffled. He, he basically said, ‘Well I, I don’t know, I don’t know what’s wrong with you. He was very offhand, he said, ‘Well’ he, he actually said to me, ‘You can go to hospital for tests if you want. Now I said, ‘Well obviously I don’t want to go to hospital. Never been to hospital in my life, you know, for nothing so I was really scared. But we agreed that I’d go home that evening, and I’d go back in the morning and the doctor would ring the hospital first thing and they’d try and get me a bed in for some tests.

I was 14 and I’d just been on a school trip, went to Yorkshire and part of the trip was a twenty mile walk. And I did ten and managed to, that was about all I managed to do and then I started to feel unwell. But I’m not exactly a fit person so I didn’t expect that to be unusual.

So and then when I got back I just didn’t feel well at all, I was constantly tired and I kept getting shooting pains sort of in my arms and my legs and so Mum took me to the doctors and they said it was glandular fever which they, which they stuck to for about two, three weeks. Then they said it wasn’t, that it was a viral infection but they said that it definitely wasn’t leukaemia.

Then I went on holiday and then when I came back there was a letter from a different doctor, because there were sort of two that work together and she said that she wanted me to go in straight away, just to see me. And, because this other bloke was on holiday and she took one look at me and said ‘I’m not happy about this, and sent me straight into hospital.

But she was quite worried because she said, ‘It could be appendicitis’, so that’s when she took me to the doctor’s, and they felt my stomach, well, my first GP felt my stomach, and he obviously felt a lump, because he asked me if I was pregnant, and I said, ‘Not unless it’s the second coming of Christ’, which, I think, was probably the wrong thing to say, because he was quite a religious man, I think [laughs]. And no, he didn’t look very impressed by that. But, yeah, so I said, ‘No’, basically, and he said, ‘Well” he could feel something and he wasn’t sure what it was. So he disappeared and he brought back a lady who I hadn’t met before, but she was another GP in the practice, and she did the same tests, the same feeling of the stomach that hed done, and said, ‘Yeah, there is definitely something there. We need to get it checked out. So they did a urine test, and I went back the next day, and the urine test had come through that there was absolutely nothing wrong at all. So they then said, ‘Oh, perhaps it’s a cyst. ‘Were going to send you for an ultrasound.

I started off going to the GP’s, I had about two weeks of symptoms by this point, cos we just thought oh hes just picked up a bug or something, or something like that. Went to the GP’s and I’m pretty sure the first time we were just told just basically just to go away. Went back a week later then we had blood tests so they were testing for stuff like Coeliac disease.

And they were testing for things like coeliac disease, or just anything wrong with my blood levels, nothing came back. I think I went back to the GP’s again, again nothing really came back. I think they did another blood test to double check for Coeliac disease then it was about that time we started going to A&E.

When we went to A&E I had an X-ray, the X-ray diagnosed me with constipation. So and basically I kept on getting diagnosed with that from there on fourth, I kept on going in to A&E and going into hospital through A&E, getting diagnosed with constipation, they gave me laxatives, sorted the problem but then I became constipated again about two weeks later. So we were asking questions like Well what’s causing the constipation? Isn’t constipation a symptom not an actual diagnosis?

I went to GP’s, I think I had about four times, went to A&E about four times. Just kept on getting turned away.

The GP did eventually refer us to a gastroenterologist yeah, but before we got there we were going to A&E because I was, I was that ill, I was just,

The pain mainly, fatigue?

Yeah the main symptoms that the most significant ones were pain and tiredness, I was really, really weak. I struggled to walk, I used to be a cross country runner I used to be athletic, I was really, really sporty. But I was struggling to walk ten minutes and when I was walking for ten minutes I was just walking incredibly slow, hunched over holding my stomach. Something wasn’t right. And then on top of that the other symptoms I had were blood in stools and essentially I was constipated as well. And the other symptom was weight loss, I lost about at least, easily a stone by that point and I was being sick lots, I just had no appetite, I was literally eating nothing.

And it didn’t occur to anybody that it might be bowel cancer?

Well we did ask the question to a certain doctor because this probably might be another question but weve a strong family history of bowel cancer. An extremely strong family history of it, something called HNPCC, hereditary nonpolyposis colorectal cancer otherwise known as Lynch syndrome but that’s down my Dad’s side.

Which syndrome?

Lynch syndrome. And basically it’s down my Dad’s side and basically theres as I said a strong family history of bowel cancer, primarily and it’s also linked to other types of cancer. So we asked the question does, does he need a further test to rule out bowel cancer? I was told categorically no, too young for it to be cancer.

Did the GP’s know about this when you were going with all these symptoms?

Yes we told all of them.

So you made it quite clear?

They were quite clear.

So, you would have expected to have a scan perhaps?

Yes definitely. There was actually a booklet to do with HNPCC and we got the booklet out and on the back it said, symptoms of bowel cancer include, and I had every one of them and we showed to the specialist gastroenterologist and said do we need a further scan. Told, No.

It started around September ’95. I started to get headaches and some pain in my neck as well. I went to the doctor who I hadn’t really seen very much, but I went to see him and he said there was nothing wrong with me. Again in about three, four weeks I still had these headaches and these neck aches and I was finding it you know quite hard to sleep and again I was told that there was nothing wrong with me.

This carried on for another month, I went to see him again. Again I was told there was nothing wrong with me. This went on for six months and I went to see my doctor eight times, this was my local GP, and he actually said there was nothing wrong with me. And I actually thought I was imagining this pain because obviously you trust your doctor, well I did because he obviously, he is trained to understand what the problems are and if he said ‘Theres nothing wrong, theres nothing wrong. That’s what, what I was thinking anyway.

So I began to think that I was just imagining this pain and it was getting worse and worse and I had to study for my A Levels, this was very, very hard because the fact that my neck was so very sore that I found it hard to look over my work to do lots of work and revision. And again I had the headaches as well so it was, it was quite horrendous.

So it all began on April 16th in 2000. I woke up on the Monday morning with a large lump on my left collarbone. It was a huge, a huge swelling just under the collarbone which appeared overnight which wasn’t there the night before. So I went to my GP feeling well, not thinking it was anything very serious. He examined me and found that I had enlarged lymph nodes in my neck, under my arm and my abdomen. He thought it was probably glandular fever which was most likely outcome. So he requested a blood test and I thought not much more of it but I did think that it wasn’t glandular fever because I didn’t really feel that unwell.

So the next day my GP came to the house by 9 o’clock and said that it wasn’t glandular fever but it was most likely to be a bacterial infection. But and gave me antibiotics. But he said then that for, for his own piece of mind to go for a chest X-ray just to make sure that my chest was clear.

So I’d been there a while, after about six months I’d noticed this kind of lump on my neck and hadn’t really thought much of it at all at the time. It was just kind of, you know, just literally noticed that it was a lump and wasn’t anything extraordinary at all and thought, oh it’s probably just a bruise or something like that, or you know anything really. Nothing really entered my mind about it, nothing caused me to worry about it at all.

But again it still, you know, still didn’t play and, still didn’t go away at all and kind of continued to play on my mind. And I thought, you know, after a, some considerable time must have been a, a good two months or so of having this lump, I thought I’d better just go to the doctor’s, my local GP, just to get it checked out. So I made an appointment and still wasn’t at all concerned really, just kind of going along and it was all fine. And on that first appointment she kind of, it, well, my doctor said it was kind of a, a much larger than usual kind of lump and shouldn’t really have been there, and still wasn’t really raising any major, major issues and really causing me to worry at all. She just kind of said, ‘Oh, we really need to get it checked out and perhaps go to a consultant to have it properly looked at and properly checked out. So she recommended me basically to a second doctor to go and have this thing checked out with. And again, still I wasn’t really concerned, everything just kind of progressed slowly and I never really felt, never really felt any other kind of symptoms at all.

My advice with the GP would be to keep pushing him. You can’t force GPs to listen and GP – and my experience with GPs is they’ll look for everything there can possibly be before they’ll look at cancer. And I think GPs should look at the worse things first, because they’re the things that, you know, if you leave them, you can’t treat them. Whereas, you know, if they start with things that are just stupid and little and don’t really make any difference to your life Whereas I honestly think the GPs should look at, you know, it could be really bad. It could be a bad thing, and a simple blood test could save someones life. If they just did – you know, if someone went in and said, “I’m getting pains”, and if they just did some kind of simple, you know, what their white cell count was like – you know you can tell from that, sometimes. Or if they just sent them for an x-ray. I mean an x-ray doesn’t cost much, and yet that could save someones life as well, so I think it’s just really stupid, you know that they just dismiss people. And it’s not just young people they do it with. You know, they do it with adults, and I think GPs are wrong to do that.

I asked if you had any messages for other people with cancer, have you got any messages for health professionals.

Yes obviously I was misdiagnosed with cancer and across young people misdiagnosis is a huge, huge issue, and obviously it’s statistically unlikely that young people are going to get cancer, so, but weve got to be realistic, I’ve got, given my doctor some slack about it, it was unlikely I’d be diagnosed cancer but when I’m in the waiting room feeling absolutely rubbish with x amount of symptom statistically it’s more likely that I’ve got something like cancer or it’s more likely something is wrong, you know if there is genuinely something wrong with me that warranted further investigation whatever it was, but just for whatever reason, probably mainly economical reasons, I wasn’t, I wasn’t referred for a further scan. Which is a shame if I was referred for a scan earlier the prognosis might be better, I might not be having all the treatment I’m having now.

The main message is to be aware that a young person might have cancer, and think about the diagnosis.

Yeah especially when they’ve come to this surgery x amount of times, repeatedly, and not had an explanation of what’s wrong or what even could be wrong really.

And I was going through lots, I, over the period I of course went to the doctor’s when it was, when it was quite bad, but they were pretty useless really. They thought that it was just muscular. It, they, and they gave me fairly useless tablets and couldn’t actually really do anything about the pain that I was experiencing which was also making me not be able to sleep properly. I had to sleep on huge piles of cushions [slight laugh] to be able to get into a position where I was even semi-comfortable. And then around May, the, three days after I had officially left school on study leave, I went to see a neurologist as finally they had decided that it was probably something to do with the nerves it was being cut, it was being cut off somehow, that was what was causing the numbness. That was really the only clue to what it was. And he detected a very large swelling on my side, sitting on the top of my pelvis, and he, and although I still at this point I had no idea that it could be cancerous or anything it was just, it was just a swelling, or a swelling on my groin as my Gran liked to describe it which made it sound terrible. And then, [slight laugh] and so he, and wanted me to go into hospital which was more inconvenient than worrying because I was supposed to be studying at the time but, so there, so there I was, and I really didn’t feel as though I should be there initially.

So you since the symptom started, until you saw the neurologist around?

May

Around May. So it’s about eight month that you went to see your GP and they just gave you painkillers?

Yes, yes and sometimes not even that. They refused to really take my symptoms seriously, even though it was obvious that I was in a lot of discomfort. And all they did was examine me and, and they couldn’t find anything. But I suppose that could be explained by the fact that my, that my illness is, my illness is a very rare, rare form of cancer and it’s often not that easily detectable in the, in the earlier stages.

What I would like to ask you is how long passed between you developing symptoms and being referred to the hospital?

I would have said that its, it’s a difficult thing to answer because I certainly wouldn’t want to criticise anyone, I wouldn’t want to criticise my GP. I mean my cancer is a very rare one I mean I think that it’s about one in, one to two million people get Burkit’s lymphoma. Or that type of, that type of non-Hodgkin’s lymphoma but you, it was about, I started in January and I was referred to the hospital February, so it must, mid-February so it must have been about six to eight weeks.

But you know Burkit’s being a very aggressive cancer so yeah I think perhaps I should have been in hospital a few, a bit, long before but I, I was kind of, I wanted to soldier on I, I thought it was just a virus I was con, I was convinced that it was just some sort of flu virus or a, or Epstein Barr virus you know kind of, I think its something to do with just, I don’t know perhaps I’m just stubborn [chuckles]. So yeah I think I just wanted, well I didn’t want to be hassle because I didn’t think I was ill enough to go to hospital. And I think that, that sort of put my GP off because I didn’t want to go in to hospital, I didn’t think was ill enough I thought that you literally have to be at death’s door to go in to hospital.

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 [name] Hospital in [place] to see someone.

And so the final time I went to see my GP my mother came with me and suggested that if he could refer us over so I could have this appointment. The next day we went to the hospital, my mother and father went off to work and left me there because I thought, I was only having physiotherapy, it’s not exactly a very difficult thing to have. So I was there sitting in A & E for about three hours watching people going through with, now I think about it now like what I’ve had and I think about what they had, people going in with broken fingers and toes and twisted ankles and…

Anyway finally it was my time after I’d waited for about four or five hours and I went through. And before you see a physiotherapist you have to, you have to see a doctor who actually, she was an SHO doctor, a junior doctor and she looked, she tested all of, all of my body finding out if there were any problems anywhere and she couldn’t find anything wrong with me, whatsoever. And the final thing she did was to look in to my eyes and I wondered ‘Oh therell be nothing wrong if, obviously. And then she said ‘Oh I just have to go and get something, so she went outside the cubicle and about six doctors came in and I realised there must be something wrong but I didn’t know what it was. And I thought ‘Well I only came in for physiotherapy so what’s wrong?’

And presumably you must be very grateful to that junior doctor?

I was very, very, very grateful. I would never have believed really that an SHO doctor, a senior a junior doctor would be able to diagnose something like this. When she looked into my eyes she saw the raised pressure that it, its called papilloedema and this is significant for, to say that there could be a brain tumour. So I think she knew what was wrong when she looked in to my eyes. Yeah.

And also I’ve not had the problem of going to a GP and trying to explain my symptoms, I mean I’ve been, you know, apparently if I had symptoms it would be headaches and you know, migraines and problems, things like that, and to get to the diagnosis from that, I, I can imagine it’s an absolutely nightmare. Some of them, you know, have had, had to go through some real problems, my friends that have been diagnosed, trying to get the doctors to listen to them, to take, you know, because obviously it’s the last thing people expect a young person to have, which is very well but I think it’s perhaps an idea that they err on the, on the side of caution and start with the worst possible scenario and work down instead of working up to it because a lot of the friends you know, that have had it have either got to such a state where they’re very, very poorly or some of them, it’s been left too late and theres not a lot people can do for them. Which is really sad.

So I’ve been lucky in that respect, the fact that I haven’t had any problems and had, you know, I’ve sort of skipped a whole range of, you know, problems that I might have encountered.