Happy Third Cancerversary!

It's three years to the day that I was diagnosed with Ewing's Sarcoma! Hooray for being alive and to (at least) another three years! It's been an interesting journey to say the least and while there have been many low points there have also been many high points along the way.

Being ill has changed me as a person and it made me grow up a lot and realise I wouldn't get anywhere in life unless I worked hard and went out and did it for myself. I've also realised how vital family and friends are and I doubt I would be where I am today without them, so a massive thank you to any of you that still bother to read this!

While I have lost a number of friends, none of them are forgotten and there are so many people that I'm glad I've met, who I would never have known if I hadn't been ill. It's been a real eye opener to how hard doctors, nurses (and all those who work in the health service) work. I have many people to thank for the care they have given me, and while I still have three more years before I'm given the official all clear I know I'm in capable hands.

I've done a ton of stuff in the past three years, as having cancer has really inspired me to take every opportunity in life! (A bit like the Jim Carrey film 'Yes Man' but sadly lacking Zoey Deschanel). It's also led to me realising that I need to actually put effort into things, which has paid off, resulting in me getting straight As in my A-levels. Instead of going to university this year I've decided to take a year out and go travelling in January, starting with Australia for three months!  Until then I'm attempting to start my own business, as a business consultant for small local businesses in my area (warning- shameless plug ahead!) so if anyone runs a small local business and is in need of business advice on what to do next or how to expand their business please contact me via my website! http://www.nurtureconsulting.co.uk

My main aim has been to not let having cancer hold me back in life, so I think I've done alright with that so far, in the past three years I've-

- Gone back to sixth form after a year out and got straight As
- Met some of the best people who are now great friends
- Helped raise over £40000 for charity
- Done a speech at the Royal Albert Hall
- Had an interview at Oxford University
- Flown a helicopter on my own
- Visited Athens and Rome
- Driven two supercars at over 150mph (on a track....) (Onwards to 200mph now though!)
- Been to Leeds Festival twice, and Glastonbury (I will cry like a child if I don't get a ticket for next year though!)
- Had an interview and worked for a few weeks at a top professional services firm in London
- Made it three years since my initial diagnosis
- And last but not least set up my own business!

Here's to three more years!

An unorthodox 18th

My 18th Birthday was on the 9th of December 2011, and I had a party with all my friends and went out for a meal. It was a fantastic birthday by all accounts because I ended it drunk as a skunk!

It wasn't until the next day that I found out that one of my friends, Ali, had passed away the day before. Ali Turner was 19 when he died. He had been diagnosed with a brain tumour in 2010 and after months of chemotherapy, radiotherapy and brain surgery, he was told that his tumour had gone and that he was in remission. It returned in early 2011 and he started chemotherapy and radiotherapy again. He was told that the chemotherapy had stopped working and there was nothing they could do for him in August 2011.

Ali was always an inspiration to me and someone to look up to. His type of cancer was also very rare and it made me realise that even when things looked bleak you could still fight on and make the best of things. Ali's parents and his sister were on the ward a lot and were the loveliest people you could imagine. I couldn't and still can't understand why bad things happen to the nicest people. Life truly is unfair sometimes. 

Ali's funeral was held on Thursday the 15th of December. Afterwards we went back to the golf club he played at it made me realise how many people just one person can affect. It was heart-wrenching to hear his friends speak about him, but also amazing because it made me realise what a great person he had been.   I think about him every single day without fail and I'll never forget him. 

Ali, his parents and his sister

RIP Ali Turner.

I had my scans in late January, following all my exams and they didn't show any new growth, luckily. This was the last proper scan that I had and so far I don't have any unusual pains or coughs, so hopefully nothing has started growing again. I have scans every few months to look for any sign of new cancer growth. I will have this for the next 5 years, at which point I will be a survivor. At the moment, I'm still classed as having cancer and although I sincerely hope it doesn't start growing there remains a risk that it may. I worry about what would happen if it does because it would most likely mean I would only have a while left. This thought is with me every day, every hour and every minute. Whenever I have scans coming up I worry so much about what could potentially happen.

I guess the only answer is to live each day as if it's your last. Take every opportunity given to me and try not to worry. We are all dying and it is the inevitable end to each and every single one of us. Don't waste a day because you'll never get it back. 

Live your life, it's the only one you get.

High Dose Chemotherapy- Week 3!

This was to be the hardest part of my treatment, and probably the toughest few weeks of my life. I was to be in pain that I wouldn't wish on anyone and I knew there was no way of avoiding it.

It was the end of my second week and the beginning of the third when the effects of my high dose chemotherapy really started to kick in. My neutrophils had fallen below one, meaning I had no defence against infection and that I was confined to my isolation room. I was to be in this small room for weeks.

It started out as almost nothing, a small tickle at the back of my throat but within a matter of hours I couldn't eat anything without being in unbearable pain and after a few days I couldn't swallow anything at all. Nothing to eat or drink at all and I was constantly feeling sick. I was barely able to get out of bed and spent most of my time watching daytime television and films. One particular film I do remember watching was Yes Man. I'm not sure why but it has become my favourite film, and in many ways it was encouraging to me, and it made me realise that when I got out of this horrible place I'll grasp every opportunity in life. I try to do that as much as I can now, because I've realised you're not here forever. You're here for a good time, not a long time.

Sarah was coming to visit me on the weekend of the 25th, 26th and 27th and I was so determined to not be attached to my drip by the time she came. I tried so so hard but I wasn't able to, and as the pain got to the point where I was literally crying in pain the nurses told me I had to have the morphine pump put up. Sarah came about half an hour after they started it, and I can honestly say I've never been so disappointed with myself.

I promised myself two things before I started the high dose chemotherapy. Firstly that I'd call Sarah everyday and secondly that I'd get up and out of bed for a shower at least once a day.

They both sound quite simple, but when you're too tired to get out of bed and can barely walk they're a lot harder than you'd imagine! I was eventually attached up to TPN, which meant I would be fed and watered through my portacath. I attempted to carry on drinking but I couldn't manage even a small drop by the third week, it felt like it was burning all down from my mouth to my stomach and I was in agonising pain. I was also on the morphine pump to help with my pain. It pumped morphine into my veins, keeping me on constant pain relief, although even the really high doses didn't even blunt the pain.

The skin on my hands and feet also started to come off, as the chemotherapy attacked the skin cells, meaning it was painful for me to walk. This coupled with the fact that I was very very weak meant it became increasingly hard for me to walk or get out of bed. I forced myself to get a shower each morning though, and no matter how hard it was I struggled through. Using the drip stand to prop myself up, I managed to shower myself each morning, while in immense pain. I managed to do this even on the worst days and I learnt one thing-

Now, whenever I'm annoyed at something or I'm finding something hard, I think back to this time. I think back to how hard it was for me just to get out of bed and get a shower and I think if I can do that I can manage anything. It was only a few steps from my bed to my bathroom in hospital. But them few steps seemed like a mountain at the time and I managed them. They were a huge challenge but I did it. I willed myself to do it and I managed it. To quote Churchill (again) "When you're going through hell, keep going."

It was when I was at my worst that my Mum had to leave the room because seeing me so ill upset her so much. I also know that when Sarah came to visit me, my Mum warned her about how ill I looked and my Mum was worried it might upset her. Seeing me so ill did upset her but she encouraged me to get a shower each day. She reminded me why I was doing this and who I was doing it for. Watching her leave was probably one of the hardest goodbyes I've had to make. I was scared I was going to die and when I kissed her goodbye and told her I loved her, part of me wondered if I'd see her again. I sat and cried after she'd left. I felt so alone.

Sarah and I.
March 2011

Beth had gone home for the final time too, and little did I know I was never to see her again. My Mum also found out that one of her friends had died of breast cancer. I really couldn't imagine a worser week. 

I was barely able to walk, I was being fed through a tube, I'd picked up an infection causing me to spike a temperature of 39.2 celsius and I was on constant pain relief. However, for some reason unknown to anyone my bloods had started to go back up. At first the doctors were amazed and refused to believe it stating it was nigh impossible for them to be going up so soon, but after two consecutive days of them increasing they had indeed started to go back up, albeit only slightly. But an improvement was an improvement. 

I guess miracles do happen.

High dose chemotherapy- Week 2!

By the beginning of my second week of high dose chemotherapy I was beginning to feel slightly weaker, every movement felt harder and everything began to feel heavier. This was just the beginning of the horrendous toll that the high dose chemotherapy would have on me.


My days mainly consisted of going in the dayroom as much as possible, while my blood levels were monitored. As soon as my neutrophil level (the cells in the blood which fight off infection) went below one I would be confined to my room permanently until they rose above one again. I was told that this could potentially take months, so I attempted to spend as much time out of my room as possible.

On the 16th of March 2011, the stem cells which I'd had harvested in November 2010 were put back into me. This meant that hopefully my immune system would build back up and I would be less at risk of getting a lift-threatening infection. One of the major side effects of having stem cells returned it that the fluid they are frozen in makes them smell like sweetcorn, and because they were being pumped into my blood it meant that I absolutely stunk of sweetcorn! You could smell me before you saw me and for the next few days any room I was in stuck overwhelmingly of sweetcorn!

Woo my stem cells were in that freezer!
March 2011.

While I was on high dose chemotherapy my Mum had to stay in the parents' accommodation building opposite the hospital, called Eckersley House. My Dad runs his own business so had to carry on working,  coming to see me on weekends. I always looked forward to my Dad coming on weekends because I missed being with both my parents while I was stuck in hospital.

My throat was slowly becoming sore and I was unable to eat as much, every meal being a struggle. I was sleeping for hours a day and feeling sick. The high dose chemotherapy was beginning to damage my whole digestion system from my mouth all the way through. Everything was becoming progressively worse and (sorry about the detail on this next bit) but I had the worst diarrhoea you can ever imagine, it was painful! 

I also felt really lonely at this time, as I'd been unable to see my friends because Leeds was 70 miles away from most of them and they were busy with their A levels. I felt left behind and very alone. 

One of the friends I had met in hospital was called Beth and she was 14. She had a very rare type of cancer, one usually only seen in adults. I remember her Mum, Alison, talking to my Mum about upcoming scans. My Mum was reassuring her that the scans would be fine, and this memory will always stay with me. It reminded me that everyone did their best to stay positive, even when we sometimes knew deep down things wouldn't always be as simple as we hoped. Cancer can do many things, but it cannot destroy hope.

By the end of my second week in hospital, my chemotherapy had been given and my stem cells had be returned to me. Now I was just waiting for the side effects to start in full. I was fully prepared for my organs to stop working and, as happens in 1 in 10 cases, for me to end up in intensive care on a ventilator.
There was no turning back now.

First Scans...

I had always thought something unusual would happen to me. That maybe one day an event in my life would happen, almost like something straight out of a film. I was more hoping for winning the lottery or becoming famous than getting a life threatening disease though if I'm honest!

Sarah came to visit me in the October half term which helped me a lot, although it upset her to see me so ill and unable to eat. But she struggled through and helped me as best she could. I doubt I could ever repay her for it if I'm honest. Thank you Sarah!

Sarah and I.

October 2010

I was also told at this point that because of where my tumours were it was unlikely that surgery would be an option and that I would most likely be having radiotherapy. I was also told that if I had the radiotherapy to my head, my hair would never grow back. I suppose I'd have to get used to being bald.

I had another round of tests on my kidneys and heart to check that they were still in working order, which they were. I was told that following my third session of chemotherapy I would have to have my stem cells harvested so that they could be used in a stem cell transplant (more on this later). I would have an injection everyday for a week and then I would go to Leeds to have my stem cells harvested. I'll cover more on this tomorrow though!

Never ever.

At the end of October I had scans and at the beginning of November I got the results. These would show whether the chemotherapy was working or not. If not there wouldn't be much they could do for me, only extend my life for a while. Predictably I was nervous as hell. Sometimes I would get myself so worked up worrying and then within an hour I would be convinced I would be fine. This went on for weeks and weeks and if I'm honest still occasionally worries me. It's a very unusual place to be in, as not many other people have experienced it, meaning it's hard to explain to many people. I was so uncertain and scared of what would happen. I think for the first time in my life I realised that you don't live forever. You're alive for a certain number of days and there's nothing you can do to change that, you've just got to make the most of the time you have.

I was in hospital when I received the scan results. The MRI of my pelvis showed new tumours had appeared on the left side of my pelvis. Fortunately my main tumour on the right side had shrunk slightly. This meant that the chemotherapy had had an effect on my tumours! The new tumours on the left hand side of my pelvis came as a shock though. My cancer was even more widespread than I had thought, and I was worried that it might carry on spreading even while the chemotherapy was attempting to work. Luckily the chemotherapy had shrunk my main tumour though, if only slightly. There was hope! 

I was scared of dying still, and I still am scared in case my tumours start growing again at the moment. I realised that scans aren't black and white, there's always a grey area. An area that could be a tumour or may just be a blood vessel or infection. I'd also realised that nothing ever turns out the way you planned. I thought that I would be okay on chemotherapy but I was so tired all the time and after over a month of being tired and ill it was starting to take its toll on me. My eyelashes and eyebrows were starting to fall out too and although my skin was better, it was still badly scarred. If it wasn't for my friends and family I wouldn't have been able to get this far. But the chemotherapy had begun its job. There was a reason to carry on fighting.

So it begins...

Some doxorubicin, mine was the same red as this

which I have to say was probably the only nice thing about this drug!

Monday the 27th of September 2010 was the day I was meant to start chemotherapy. I would go to theatre and have my portacath fitted, before starting chemotherapy in the evening. For the portacath to be inserted I would have to be put under general anaesthetic so I was booked to go down to theatre in the afternoon.

Ward 78 at Leeds General Infirmary (LGI) is the Teenage Oncology ward for patients diagnosed between 13-16. It was paid for by the Teenage Cancer Trust (TCT) and is unlike any other hospital ward I can imagine. It was to become my second home over the next few months and sometimes I'd be spending more time there than I would be at home. I would have to travel to Leeds for every hospital appointment and for every chemotherapy or radiotherapy session. Hooray! I thought at the realisation that not only would I be getting poison pumped into my veins I'd have to travel about 1 and a half hours to get there for it!

If anyone is ever in doubt about how lucky they are to be healthy, going onto Ward 78 would get rid of it. There are only eight beds on the ward but it's usually very busy. Some people will be too ill to get out of bed, some will be kept in single bedrooms, fully isolated. But you also see some amazing things. You see people who know full well that they aren't going to get better, people who are so sick and feel awful they can't even eat properly. And they all get out of their beds and carry on with life as much as possible. I personally don't think I was that ill, and find it amazing the strength these people had, along with their families.

Along with the usual nurses (who are quite frankly amazing and the people who saved my life) a youth coordinator works on the ward. As boring as her official title sounds Cat, the youth coordinator on Ward 78, was fantastic! She made sure we all had stuff to do and tries her hardest to get everyone into the dayroom. Basically a room with a table, kitchen, a tv and a PS3, Xbox and Wii designed to get everyone up and out of bed and get everyone to talk to each other.

 Kitchen area 

 Seating 

More seating and the giant television! 

Photos of the dayroom on Ward 78.

The people I met on ward 78 were quite frankly some of the most amazing people I've had the good fortune to meet in my life, and I must say that meeting them all was definitely a benefit of having cancer if ever there was one! We all supported each other and I honestly think it helps us all get to grips with what's happening to us at the time and by having someone else who's in the same boat to talk to it makes you feel like you aren't alone.

The chemotherapy I was going to be on for six three week cycles was called VIDE. This stood for the names of the drugs which I would be given. Vincristine, Ifosfamide, Doxorubicin and Etoposide. They would be administered over four days and three nights each time. 

I had my portacath put in on the afternoon and woke up back on the hospital ward a few hours later. Portacaths are designed so end of the portacath reaches into the first chamber of the heart, allowing the chemotherapy to spread into the blood quicker and not to build up in one area. This was to stop any damage being done as it was so toxic if it stayed in one area too long it would damage the surrounding tissue. A while after I woke my chest began to feel unusual and a nurse checked my pulse. My resting pulse rate was 210 beats per minute. The usual rate for me is around 50 beats per minute. They had no idea why it was doing this but they couldn't start chemotherapy until it stopped. After being sent for a chest x-ray to ensure that my heart hadn't been damaged when they inserted the portacath, my heart rate returned to normal and finally, at 2:00am on the 28th of September 2010 I started chemotherapy. 

For the next two days I didn't get out of bed at all. I didn't want to and, at the time, I didn't want anything to do with anyone on the ward. They were related to the cancer and I didn't want to have that stupid disease. I only wanted to be at home. I missed my home, my friends and everything else. I hated the ward at the time. I hated that stupid disease called cancer. Why me? I sat in bed and asked myself that for two days. I stayed in my theatre gown all the time I just watched tv. It wasn't until the fourth day that I got out of bed. I'd realised that staying in bed didn't make things any easier, it only did one thing and that was to make me feel even worse about where I was at the time. 

Having finally got up, washed and dressed I felt so much better. This was my last day in hospital and I spent it like I'd spent the last few days in hospital, watching daytime television! Is there any better way to spend a day?! 

I went home after my chemotherapy had finished and I'd had my needles that they used to access my port removed. I'd had my first chemotherapy and knew that in the next two weeks I'd lose all my hair and start to feel the side effects. But I'd got the first one out of the way. I'd done it and I'd be damned if I was going to let this stupid disease beat me without a fight.

I asked myself at the time though, was this the end of the beginning or the beginning of the end? 

I have Ewing's Sarcoma-what?!

Sunday the 5th of September 2010 would prove to be the first of many sleepless nights in hospital. I arrived at Birmingham sometime on the Sunday afternoon, as my biopsy was due to take place on the Monday morning. At the time I thought I was coming to terms with being diagnosed, but looking back I don't think it's something you ever really accept, it's just something you have to live with.

I went for a meal at a pub called The Cock and Magpies in Birmingham (it sounds hilarious in a West Midlands accent unfortunately, so probably not the best name for a pub in Birmingham!), with both my family and Sarah's on the Sunday evening. This would be the last time Sarah would see me with a full head of hair.

The ward itself had been done up by the Teenage Cancer Trust (more on this amazing charity later and what you can do to help) and it also happened to be the place I first met someone else with bone cancer. He was called Sam and he was 14. I never saw him again after my time in Birmingham, but I would love to know how he is doing and I hope he's still with us. It was somewhat surreal for me, to sit and talk to someone in the same place as me, but it definitely helped me. We both reassured each other that everything would be fine, even though neither of us had a clue about what we had!

The biopsy went ahead the next day and they took a small chunk of my tumour. I asked if they'd take out a bit for me to have a look at (don't even ask why I wanted a piece of my tumour..) but apparently they're not allowed to just give out bits of tumour! Following my biopsy I went back home in the evening, with the biopsy results due in just over a week's time, on the 14th of September.

I started sixth form on the 9th of September 2010, feeling horrendous and wondering what the point in it all was. Was there any point in getting out of bed if I was dying? I began to tell more people about my diagnosis. It was like some sort of nightmare. The worst bit must have been people asking if I would be okay. I didn't know for certain and I was terrified of the thought of dying.

On the evening of the 14th of September I received a call from the hospital in Birmingham with the results of my biopsy. I had Ewing's Sarcoma, a very rare type of bone cancer. I was one of only about thirty people diagnosed with it in the UK each year.

Naturally I did the first thing I do when I don't know something. I googled it. Below is what I found out.

Ewing’s sarcoma is named after Dr James Ewing, who described the tumour in the 1920s. It's a cancer that can develop anywhere in the body, although it most often starts in the bone. Any bone can be affected, but the pelvis, thigh bone (femur) and shin bone (tibia) are the most common places.


Fewer than 30 children in the UK develop Ewing’s sarcoma each year. It usually occurs in the teenage years, and more commonly affects boys than girls.

Five-year survival for localized disease is 70% to 80% when treated with chemotherapy. Five-year survival for metastatic disease can be less than 10%.


I knew mine was metastatic. I now understood why they'd told me not to look it up on the internet. As I would find out in the next few months not everyone follows the statistics, every single cancer is different.


I also found one out one more thing. Ewing's Sarcoma usually responds well to both radiotherapy and chemotherapy. I knew that it would be hard. Some days I would feel like giving up. Some days I would question if it was worth it. But I knew there was hope. A small light in the very very dark place I was in at the time.