Stephen

Age at interview: 19

Age at diagnosis: 15

Brief Outline:

In 2010 Stephen was diagnosed with bowel cancer. He had a hemicolectomy to remove the tumour, and chemotherapy, but a tumour appeared in his left leg. He had more surgery and radiotherapy but tumours were found in his pelvis and chest, making it incurable.

Background:

Stephen is a student. Recently he has spent most of his time raising funds for the Teenage Cancer Trust. He is single. Ethnic background/nationality: White British.

More about me...

In 2010, when Stephen was aged 15, he developed symptoms, including fatigue, weight loss, blood in his stools, and abdominal pain. He went to see his GP on numerous occasions, and also visited A and E, but was told his problem was constipation. After six months of debilitating symptoms he went into A and E in great pain, and was taken to theatre for surgery. Only then was he was diagnosed with bowel cancer. He had a hemicolectomy to remove the tumour, and then six months of chemotherapy.  During this time Stephen continued his studies whenever possible, and achieved excellent grades in his GCSE exams.  When he had the energy he did as much sport as he could. 

After a short period when the cancer seemed to be in remission, Stephen found a lump in his left leg, behind his knee, and in December 2011 his doctor told him that the cancer had spread.  He had more surgery to remove the lump from his leg and 30 sessions of radiotherapy.  In May 2012 it became clear that the cancer had returned, so Stephen underwent more chemotherapy.  At that point doctors were discussing the possible amputation of Stephen’s leg, but before they could perform that surgery the cancer had spread to Stephen’s pelvis. Stephen had more surgery to remove the lymph nodes in his pelvis, and more chemotherapy, including isolated limb perfusion chemotherapy. Despite all this treatment the cancer spread further. Recent scans show that it has spread to the wall of Stephen’s chest. His pain is quiet well controlled with morphine and other drugs. 

Throughout all this time Stephen has done his best to keep up with his studies, to remain positive, and to enjoy living.  In January 2013 he started a Facebook page.  He made a ‘Bucketlist’ of 46 things he wanted to do or achieve. This included writing a book, and organizing a skydive and a party and many other events in aid of charity. He has given numerous talks, including one at the O2 Arena in front of 4,000 people.  With help from others Stephen has collected over £560,000 for the Teenage Cancer Trust. 

Soon after this interview Stephen had breathing difficulties and went into hospital. He returned home for a short while but sadly he died soon afterwards. During that time he collected over 4 million pounds for the Teenage Cancer Trust. He was awarded a posthumous MBE.

Stephen, age 15, repeatedly went back to the GP and A & E over a six month period with classic symptoms of bowel cancer, but even with a family history of bowel cancer it was ruled out because of his age.

I started off going to the GP’s, I had about two weeks of symptoms by this point, ‘cos we just thought oh he’s 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 we’ve 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 there’s 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”.

Stephen’s symptoms became really bad and he ended up having emergency surgery for a blocked bowel. The surgeon removed half of his bowel and after a biopsy of the material he was diagnosed with bowel cancer.

Yeah so eventually the symptoms got really, really, really bad I was on a family holiday in Spain, half way through that just it went to a different level, literally it went from I was struggling to walk a couple, a couple of steps or not being able to walk at all. I was, it was just the pain I was in, it was, just stopped me from sleeping for example, I was just rolling about but at the same time every time I rolled about it was hurting. So I was really uncomfortable like I hadn’t ate anything for seven days or something and then we went to A&E when we got back, and I was constipated, had some more laxatives. So then tried to take them and two days later again it was just, I was in absolute agony.

So I was very, very uncomfortable, very uncomfortable. And this time we went into the hospital and someone had a feel about my stomach and then the surgeon was called down, well we didn’t know he was the surgeon at the time but a higher doctor was called down to have a feel of my stomach and he straight away said, then I was sent for an emergency CT scan. The CT scan identified a blockage, is what they called it,

Was that the first CT scan you had?

The first CT scan up to now, it was just X-rays even though we pushed for CT scans, we pushed for a colonoscopy, just something further, more thorough.

Mm, all you’d had is plan X-rays before that?

Yeah. Yes up to that point just had X-rays. Now we had a CT scan and they identified an actual blockage in my bowel, an obstruction is the exact word they used and they said, “We’re going to have to go in with surgery to, to remove that obstruction.” By this point they potentially had a better idea of what it was but they called it, “Just an obstruction,” what they say, we went in with surgery and it ended up being a five hour operation I think it was.

And then the surgeon after the, the operation said, “We had to remove half the bowel, what we removed looked ugly” was the term he used. “We’ve sent it off to the lab, results will be back soon.” And then by this point he pretty much knew it was cancer. We thought it, yeah potentially it, ‘cos why else would he remove half of my bowel. But we waited for the results to come back and that actually confirmed yes it was unfortunately bowel cancer.

The diagnosis was a shock to Stephen but he thought the surgeon broke the news sensitively.

How was the diagnosis actually delivered to you? Did they,

Yeah we

Were you parents with you?

So we were in hospital for six days and then the surgeon said “You can go home, for a weekend and take it easy obviously don’t do much ‘cos you’re recovering from surgery, come back on Monday morning and we’ll discuss the results because they’ll be back from the lab then.”

So we came back took to a side room me, my Mum and Dad in the room and the surgeon and then there was a, I think he’s a head nurse of the children’s ward. And the surgeon just went through what the results were, he did it sensitively as well he did a, objectively he told us the facts and we just went through it all. Just asked lots of questions, what’s happening next? What’s the extent of the cancer? What can I expect for the next however long? And so he told us the next step was to move to be referred to either [another hospital] to discuss chemotherapy.

Oh what were all your reactions then?

Obviously we were shocked, hugely shocked that at that age to get cancer but it was diagnosed post operatively which helped so it was kind of, “You’ve got cancer but we think we’ve kind of took it all out.” ‘cos obviously it’s kind of a bit better and, and there was a lot of relief that we actually had an answer to what was wrong with me and it was kind of “Oh we can get this out of the way then I can start back to normality.”

There is a strong family history of bowel cancer in Stephens family due to HNPCC (Lynch syndrome).

We’ve 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.

Yeah so yeah, in my family there’s something called Lynch syndrome, which it means we’ve got a gene,

How do you spell that? L

L Y N C H  which means there’s a, a gene that runs in the family which means a certain protein isn’t made like so it’s basically a faulty mis-match repair gene which means we’re more likely to get cancer. There’s a 50:50 chance that this gene is passed on or a 50:50 chance that this gene shows in each person so unfortunately I’m showing positive for the gene, so I’m more likely to get cancer, so throughout my Dad’s side there has been people who have been more likely to get cancer statistically and they have got cancer more often. Bowel cancer is the most common… and there’s other types as well.

Before his diagnosis of bowel cancer Stephen had emergency surgery to remove a blockage in his bowel. He had a Hemi- colectomy.

I was very, very uncomfortable, very uncomfortable. And this time we went into the hospital and someone had a feel about my stomach and then the surgeon was called down, well we didn’t know he was the surgeon at the time but a higher doctor was called down to have a feel of my stomach and he straight away said, then I was sent for an emergency CT scan. 

Now we had a CT scan and they identified an actual blockage in my bowel, an obstruction is the exact word they used and they said, “We’re going to have to go in with surgery to, to remove that obstruction.” By this point they potentially had a better idea of what it was but they called it, “Just an obstruction,” what they say, we went in with surgery and it ended up being a five hour operation I think it was and then,

What did they do exactly to remove the blockage?

Yeah is yeah so they ended up removing half my bowel, so I underwent a hemi-colectomy fortunately I didn’t need a, I think it’s a stoma bag is it? Sometimes when you have bowel surgery

You didn’t have to have a stoma,

No yeah, I didn’t have to have a stoma or anything like that.

They just joined up the two ends.

Yeah they managed to join it up perfectly which was good for me, so I managed to do that. And then the surgeon after the, the operation said, “We had to remove half the bowel, what we removed looked ugly” was the term he used. “We’ve sent it off to the lab, results will be back soon.” And then by this point he pretty much knew it was cancer. 

Stephen’s bowel cancer had spread to his leg and his options were sometimes limited as his case was unique.

My experiences of surgery is well it’s always quite good, but in a way with the surgeon you’ve got the easy job ‘cos they know what they’ve got to do, it’s just in, out, recover. And as I say I was fortunate again I didn’t catch any infections or anything like that. So literally I was just in, out and off I went. And we started the radiotherapy.

How was communication with the doctors at this, during all this time? Were you involved with decision making with your parents, or were you given options?

Yeah we were given options but with something like a new tumour in the back of my leg there was only one big option, yeah there’s surgery and then radiotherapy was just medically the best option by far. So we just, with this point yeah we just we went with whatever they said. And it, we were all involved but as I say there was only really one option.

Yeah so I had three months of that next lot of chemotherapy and then the scan results showed that the tumours had continued to grow. 

In your leg?

Yes. So at this point they were discussing an amputation so at this point the only tumour they could see was the one in my knee, so they were discussing an above knee amputation. So with obviously after the first consultation we were sent home to kind of discuss this because the doctors thought there was still a possibility that because it had spread from my bowel to my knee that it would have spread anywhere else. So this is where we were involved hugely in the decision making. And

Where did you get information, did you look for other information during all this time? I mean apart from what the doctors were telling you.

Yeah but we were also told there isn’t a lot of information just because my, my case was so unique a) having bowel cancer at such a young age,

Yeah.

And b) the fact that it had spread from my bowel to my leg, in the back of my knee. It was just such a unique progression that there really wasn’t much data or information out there so intuitively we just had to try and make a decision. We decided just to go with the amputation, before we did that we just needed another scan. This scan showed though there was something in my pelvis, and the lymph nodes in my pelvis were cancerous so obviously that kind of rendered the amputation pointless.

Stephen spent 6 days in hospital after his hemi-colectomy. He recovered quickly and was soon going back to school part time.

So how long were you in hospital during that time?

During that time 

After surgery.

I was in hospital for six days I think.

And what were your experiences, we quite like to hear people’s experiences of being in hospital.

It was, I was, yeah because of my age I was sent back to a kind of children’s ward, I was 15 at the time, and obviously they’re not used to children in this hospital that I was at then, used to children having such big operations, it was only a relatively small hospital and it wasn’t a specialist children’s hospital. So they weren’t really used to children having such big operations. So as a result I kind of got lots of attention, lots of care almost if that makes sense. And the communication then was quite good actually, but it was kind of like I think they knew, the hospital knew they kind of made mistakes with my diagnosis so everyone was trying to perhaps rectify that a bit. But my experience after the surgery was, was okay.

So how long did you have then, that you went back home again? How was the post-operative recovery?

Yeah a normal person who has an operation, I was told takes about six weeks off work or something like that. Within two I was starting to go back into school, 

Oh.

just starting to do stuff so I was very keen not to let things keep me down. I probably pushed myself a bit too hard, I always do. But I was out there, I was trying to do what I could which is my way of dealing with things so,

So you didn’t have a long time off school really?

No. No I had I started going in just like, I don’t know a lesson or two and then crept it up to half days and before I knew it I was just back and doing, doing full days like I could. I was still getting rest at home and sleeping when I needed it.

What about when you came home? Did the GP come and visit you? Or did you get any follow up from local doctors?

I don’t really think so I think we regularly went to the GP’s just to see the nurse just to get the dressing changed and to make sure it was okay and then I think it was after a certain amount of time we had to have the stitches out, so it was, we were in contact then.

So that all went alright?

Making sure the wound was looking okay. But yeah fortunately I had no infections anything like that. The recovery of the wound itself was absolutely perfect.

Stephen’s bowel cancer had spread to his leg. He had surgery and radiotherapy but it did not stop the tumours growing and the option of much more aggressive surgery was discussed.

Then in November 2011 I found a lump and literally that’s all it was, just a painless lump behind my knee I underwent a few biopsies and there was concern that it was cancerous and it was confirmed it was the same type of cancer I’d had previously i.e. it was bowel cancer so but it was, so it was bowel cancer that had spread, so it was metastatic bowel cancer so at this point I kind of had no bowel cancer in my bowel because that was removed from surgery, but before they’d removed it, it had already spread to my leg. So I’d technically got bowel cancer in my leg.

I was a bit gutted, 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 he’d got it all.

And then about two months later they did a scan and it was confirmed the tumour was still there, which they couldn’t believe because a) they thought they’d removed it all b) the area, all this radiotherapy and c) not only was it there it was back and quite big.

Yeah so I had three months of that next lot of chemotherapy and then the scan results showed that the tumours had continued to grow. 

In your leg?

Yes. So at this point they were discussing an amputation so at this point the only tumour they could see was the one in my knee, so they were discussing an above knee amputation. So with obviously after the first consultation we were sent home to kind of discuss this because the doctors thought there was still a possibility that because it had spread from my bowel to my knee that it would have spread anywhere else. So this is where we were involved hugely in the decision making. And…

Where did you get information, did you look for other information during all this time? I mean apart from what the doctors were telling you.

Yeah but we were also told there isn’t a lot of information just because my, my case was so unique a) having bowel cancer at such a young age,

Yeah.

And b) the fact that it had spread from my bowel to my leg, in the back of my knee. It was just such a unique progression that there really wasn’t much data or information out there so intuitively we just had to try and make a decision. We decided just to go with the amputation, before we did that we just needed another scan. This scan showed though there was something in my pelvis, and the lymph nodes in my pelvis were cancerous so obviously that kind of rendered the amputation pointless. 

Stephen had complications after one of his surgeries, due to the type of anaesthetic, which left him in considerable pain. He had a minor operation shortly afterwards which corrected the problem.

Yeah so in, when I had the surgery in December 2011 

This was when you had the lump removed from the back of your leg?

Yes, when they removed the lump from the back of my leg I was in hospital for about, I think it was only about four or five days, or that was the plan when I was leaving the hospital I just got a really, really bad headaches, just on the day we went to leave I was just “Oh I don’t feel right, do not feel right.” I was feeling quite sick someone said, “Just put your head down,” I just had a nap for an hour. And okay well we’ll go now, I threw up around twice within fifteen minutes of getting in the car so obviously we phoned, phoned the ward and said, sorry he phoned the ward and said, “He’s not right, do you want him to come back in?” They were like, “No, no, no, it’s fine.” By the time we were anywhere near back home, I’d threw up much more times, I was in absolute agony, it’s probably the most pain I’d ever been in, just the headache I had was just crippling, I couldn’t concentrate, I couldn’t think we ended up going straight into the GP demanding to see a doctor. They just gave us a painkiller that we could take underneath kind of my gum, because I couldn’t consume anything. And just recommended kind of bed-rest and so I went home, just lied down still in quite a bit of kind of considerable pain. And then Mum got on the internet and started looking at what it could be and the only possible kind of thing was an epidural tear which is from the surgery I had an epidural, for the pain for my leg and they basically put it in wrong or it, it leaked or something, I can’t remember the exact explanation.

So you didn’t have a general anaesthetic, you had an epidural for that.

Well I had a general and the epidural.

Oh did you?

Yeah I had them both, them both.

And that was to prevent pain in your leg after the surgery?

Yeah.

I see.

Yeah, yeah. Mm. So, so then I had this and they recommended was just stay lied down for 48 hours and it should go. Well I was still getting pain when I was lying flat, it wasn’t as much, I was stable but I was just there, I couldn’t do anything.

Did you ring the hospital for advice?

Yeah, yeah, yeah, and they were like, yeah they were just saying stay 48 hours there. And we were just like, but you literally, he’s still getting a bit of pain even though he’s lying down, the rest of the day and it just didn’t get better. But it was… the pain was that bad the distance I was walking from my bedroom to the toilet which was twenty metres I was feeling like throwing up ‘cos the pain was kind of that bad. So as I say we looked into it and there is an operation that can be done to fix it if that makes sense, that had risks in itself but we just said “We think he needs this operation ‘cos he’s in so much pain so we kind of put pressure on to have this operation, we went in over New Year’s and I think it was the 29th to have it and then, or was it? No we went in New Year’s Day, they had to open up a ward especially I had this operation, just with a local anaesthetic, and then absolutely fine.

Yeah basically when they put the needle in, they just, they filled this kind of gap up that they put the needle in so they just, so basically what I think it might be, they put the needle in and it doesn’t heal right or the hole was too big. So there was a leak of some stuff, so they just had to fill this hole.

Was that under general anaesthetic?

That was just under local.

Oh a local.

So that was a pretty uncomfortable experience but that was nothing compared to the pain I was experiencing as I said when I was upright. ‘Cos as I say it was a really weird symptom that, whenever I was upright the headaches were insane. 

Yeah anyway that was just a, another minor thing.

Stephen describes the types of chemotherapy he had after his surgery.

So then you went to see somebody about the chemotherapy?

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

So you were an in-patient?

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

Stephen appreciated being with other young people on a specialist teenage cancer ward when he was having his chemotherapy. He also found going back to school during his treatment helped him cope.

Yeah, as an inpatient I was treated on a specialist Teenage Cancer Trust ward, which so I was treated with other young people my own age, which was incredibly helpful just to know there’s others out there, so that made that experience as bearable as possible. And then when I was treated as an outpatient I was kind of in-out, so it was kind of relatively in hospital for two hours, it was a bit manic in the kind of day case centre they had but because it was only outpatient I was back home that night I couldn’t really complain.

So in the Teenage Cancer Trust ward I got to spend time with other young people, and there was stuff teenagers use, there was PS3’s [Play Station 3’s], there was musical instruments, which kept me busy through chemotherapy because of course chemotherapy is not the nicest stuff.

No throughout all, all of my chemotherapy treatments I went back to school as much as I could and kept up with studies, and that was…

Oh you did, good.

…my way of coping.

Fantastic. How did people react at school?

I was quite surprised and probably a lot of teachers or for example a lot of people wanted to try and wrap me up in cotton wool and say I was doing too much, but no I enjoyed trying to do something it paid off and in my GCSE year for example, this was when I was first diagnosed so when I had surgery and the six months of chemo, then at the end of it I got five A* and 4 A’s and 2 distinctions.

Stephen describes having isolating limb perfusion chemotherapy.

So and then I went to a hospital in London to have specialist isolated limb perfusion chemotherapy.

How does that work?

Isolating limb perfusion chemotherapy works by creating an artificial blood supply which is isolated to just the tumour. So in the case of my leg the top of my leg was tourniqueted, so lots and lots of pressure on it and then an artificial wire was plumbed into a main artery that led into a tumour and likewise one; a main artery that came out of the tumour was fed out, so it was kind of like this loop going around into the tumour. So then they could put a high dosages of different drugs directly into the tumour, and these are drugs that they wouldn’t be able to put in your whole body obviously. So the idea was these drugs are more toxic and hopefully have more effect on the tumour. In my case the scans around three months later showed the tumour had grew a little bit, so it might have had an effect of slowing down but the effect wasn’t huge, but they did, it was worth it. And while they were in there doing the isolating limb perfusion chemotherapy in my leg they also removed the lymph nodes from my pelvis, the cancerous lymph nodes from my pelvis.

How did it feel when you were having this special chemotherapy just to your leg?

I was under a general anaesthetic.

Oh.

So it did, think of it more like an operation. Not like standard chemotherapy if that makes sense.

Yes.

It was just one kind of big blast. So yeah I was un, I was, operation for around six hours. And that’s what it was, even though it was chemotherapy it was an operation. They just gave me one big blast of this isolated chemo while I was under a general anaesthetic and off I went.

So how long were you an inpatient that time?

Again that was about five days, I was very quick in my recovery. I think it helps relatively young and healthy.

Stephen had radiotherapy for secondary cancer after surgery and although he had 30 sessions he had very few side effects.

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 he’d 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. 

Stephen is waiting to see if he is eligible for a clinical trial using biological therapies.

So at the moment yeah, we’re, we’re waiting to see if I’m eligible for another for a clinical trial.

So you’re waiting to see whether you’re eligible?

Yeah and if I have this specific mutation then this monoclonal antibody drug it probably, will probably just go for it and try so in terms of how I feel about clinical trials, the efficacy for me might not be huge, the chances it will actually do something is very slim. With this one it’s a bit higher because there’s a proposed mechanism of why I might interact well so I’ll probably give it a go. But if it doesn’t work for me there’s a feeling, well the fact that you help patients in the future is important so I’m happy to help.

Stephen created his own website about his cancer journey. He made a bucket list of all the things he would like to do and one of which was to raise a million pounds for the Teenage Cancer Trust.

Had you joined the Teenage Cancer Trust at that point?

No I haven’t really joined them if that makes sense. I’m an unofficial kind of affiliate, I’m just a fund raiser. Probably should mention as well when I was, when I was diagnosed in my pelvis, when it was said, when they were discussing amputation but then they said “Oh it’s in the pelvis,” after and they said it was incurable, unfortunately so yeah and then they said this Christmas period and then and I started back studies in January and then I was obviously thinking diagnosed incurable, what am I studying for? I wanted to study medicine, I was at, I’d just had interviews at Cambridge and Leicester but medicine’s a five, six year course. If I’m incurable it’s not going to be the best use of my time. So that’s when, on the 13th January 2013 I made a Facebook page called Stephen’s Story, which included a bucket list of things I was going to do. It included fund raising and it included all kinds of weird and wonderful things that have kept me busy since.

So you reacted to this awful news by being very positive and making a list of what, all the things that you’d like to do.

Yeah. As I say yeah since starting Stephen’s Story I’ve ticked off 35 of these bucket list items, so that includes crowd surfing in a rubber dingy, it includes drumming in front of a huge crowd, I did that in front of ninety thousand people at Wembley, included doing some public speaking, I did that at Downing Street and the O2 arena in front of 4,000 people. It includes getting a tattoo, of which I’ve got two. It includes skydiving. It includes hugging an animal bigger than me. I hugged an elephant.

An elephant?

Yeah. Awesome. And it just included all these weird and wonderful things that have just kept me busy throughout the year. I mean as well number one on the list was to raise £10,000 for Teenage Cancer Trust, and in just over a year now I’ve raised £570,000 for ‘em.

Amazing. Half a million pounds.

Yeah just like that so my new target is now a million. So fingers crossed we get there.

Yeah so I, yeah I’ve had the bucket list which I’ve had a great time with, and I’ve done loads of fun things off the bucket list as well. And yeah I am quite happy, whether I tick another off or not, the main thing I’m concentrating on is the fund raising, so as I say the new target is a million, so I’m going to be pushing hard for that. As well I’ve been doing kind of motivational speaking to schools, to businesses, to health professionals, to all kinds of kind of settings to share my experiences with, with a view to helping and just got lots of exciting projects on at the moment. I’ve got a documentary out soon, I’ve recently released my own new website, Stephensstory.co.uk, recently released an e-book, hopefully I’m going to write a bigger book in the future and yeah just loads going on.

Stephen wrote about his cancer journey to spread as much positivity as possible. He found the response to his website humbling and helpful.

How much support have you gained from outside, through the websites, through Facebook or Twitter or your blog?

Yeah they’re, since starting Stephen’s Story the support I’ve had has just been absolutely huge, it’s been from inter, it’s been international, for example I’ve had messages from other countries just saying, “Wow, really respect what you’re doing, blah blah, wish you all the best.” Or people sharing their own stories of someone who’s had cancer or anyone or etcetera and it’s just been as I say really helpful, ‘cos it’s just really humbling you know that, that people do actually care but without something like Stephen’s Story all around me and it’s huge reach I wouldn’t be able to notice that. But people do genuinely care and yeah want to help out.

Oh that’s good, they can see, so you look at, do you write something most days?

Yeah, no I try and update as much as I can, so there’s normally an update or two a day. Whether it’s about what I’ve done in the day, whether it’s about an upcoming event, whether it’s just a motivational just thought, or whether it’s just a silly anecdote to try and put as much out there as I can and it’s all just as positive as can be, and again it’s a, the page is just to spread as much positivity as possible.

Stephen believes people should be as positive as possible and enjoy life and he talks about some of the things he has done since his diagnosis.

You’ve obviously done a huge amount for other people and you say that keeps you going in some ways?

Yeah well one of my mottos is the best ways to help myself is to help others, so that’s how I’m spending my time now and as a result I’m pretty, pretty happy with things.

So would you, what sort of message would you pass onto other young people who’ve been given a diagnosis of cancer?

To young people, it’s just to keep on going, and just to be as positive as possible. But it’s important to recognise positivity isn’t being happy and smiley 24:7 ‘cos that’s a bit clichéd and unrealistic. Positivity to me is about making real steps and changes to your life. How you’re going to approach something or what you’re going to actually do with your life and just start thinking about things a bit more, a bit more potently and coherently, so is worrying about X scan result actually going to achieve anything? Or would you be much more productive just totally forgetting about it and just enjoying those couple of weeks leading up to it doing I don’t know whatever you enjoy. Each to their own, but yes to me positivity is about just making actual changes to your life and make a difference. And yeah so just keep on going. Cancer isn’t great, but life can be so you’ve just got to concentrate on that bit, and just enjoy living.

Yeah so I, yeah I’ve had the bucket list which I’ve had a great time with, and I’ve done loads of fun things off the bucket list as well. And yeah I am quite happy, whether I tick another off or not, the main thing I’m concentrating on is the fund raising, so as I say the new target is a million, so I’m going to be pushing hard for that. As well I’ve been doing kind of motivational speaking to schools, to businesses, to health professionals, to all kinds of kind of settings to share my experiences with, with a view to helping and just got lots of exciting projects on at the moment. I’ve got a documentary out soon, I’ve recently released my own new website, Stephensstory.co.uk, recently released an e-book, hopefully I’m going to write a bigger book in the future and yeah just loads going on.

Two years after his initial diagnosis Stephen was told his cancer was incurable. He talks about how he approached consultations.

Who told you that it was incurable? Was that your

That was 

Somebody

the consultant oncologist.

An oncologist.

Yeah mm.

That must have been a very difficult interview.

Yeah it was. But he was sensitive in how he, how he did it, and I’ve been battling cancer for two years, at that point so we’d kind of got used to all these different consultations or I had anyway, just and it, it had gradually got worse with time and you, you kind of learned, well I learnt anyway to control the controllables, you go into every consultation just thinking it is what it is. You know you can’t really, well no amount of worrying is going to change what the results are so you’ve just got to change how you react to ‘em if that makes sense. I was just going to react in the best way possible whatever they were.

Stephen would like doctors to not automatically dismiss cancer as an option when investigating young people who are ill.

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 we’ve 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.