I throw my hands up in the air sometimes, saying ayoo where'd my hair go?

Many people worry about how they look. They spend so much time worrying about how they want to look, they never realised just how beautiful they are. Many people stare at anyone that looks slightly different. In the two weeks following my first chemotherapy I would learn what it's like to be stared at by people in the street.

For the first few days following chemotherapy I was fine and it was somewhat uneventful. I had my hair cut short on Monday the 4th of October 2010. None of my friends ever saw me with this short hair and I've desperately been trying to find a photo of it but can't seem to get hold of one!

The next day I awoke to find my face was covered in spots. I don't mean slightly, I mean covered all over. I was immediately taken to Hull Royal who said that it was nothing after I had waited three hours for a doctor to come and see me. I remember walking through the centre of Hull, with everyone staring at me. Strangers would stop just to stare at me.  My face was so unbearably sore from all the spots that the wind made my face sting. I hated how I looked and was embarrassed to go out and I hadn't even lost my hair yet.

I barely slept at night for the next few days as it hurt so much to lay on my face and the spots had spread to my back and chest too. I refused to leave the house for three days and the only people to see how awful I looked were my parents and Sarah.

Friday the 8th of October would prove to be a very interesting day. I woke up feeling horrendous, and after collapsing in the shower, I went straight back to sleep. A while later I got up again and attempted to eat something but my throat was so unbearable sore and I couldn't manage to eat anything. I could barely speak and both felt and looked horrendous. My Mum rang the ward and they told her to check my temperature. It was above 37 celsius so they told me to go to Hull Royal and have my bloods done. If I had an infection then I would have to go to Ward 78 in Leeds for IV antibiotics. The results came back and they told me I would have to go to Leeds for my antibiotics to be given. This was to be my first time in hospital with an infection.

I arrived at Ward 78 at about 10 that night and was started on antibiotics straight away. They were given through my portacath so I had to have a drip stand with me all the time, even in the shower, just like chemo!

The next morning I washed my hair three times while in the shower, knowing full well that it wouldn't be there much longer. My face still stung so badly but it was starting to get better because it was in fact related to the infection I had caught! It was later on that afternoon when it started to happen. I was stood outside the main entrance to the hospital, on the phone to Sarah, that I ran my hand through my hair only to look at my hand and find I was still holding a big clump of it. My immediate reaction was not to be upset, for some unusual reason I found it quite funny! The psychological damage done to people seeing a teenager laughing his head off as he pulled out his own hair must've been huge!

I went back to the ward and told them that it had started to fall out, and they said that one of the nurses would come and shave it off for me. It was upsetting having my hair shaved off. A small part of me had been hoping that by some miracle it would never happen but I suppose it was inevitable. I looked in the mirror for the first time and barely recognised myself. It hit both of my parents hard too, making both my Mum and Dad cry. I also sent Sarah a picture from my phone and although she tried to be strong for my sake, I know it upset her a lot too.

Me

October 2010

I hated how I looked and couldn't stand to look in the mirror. I didn't want any of this to happen and I didn't like how upsetting it was for my family, girlfriend or friends. I wouldn't wish this on anyone. I now looked just as bad as I felt. 

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? 

Where to now?

Testing how I'd look bald.

September 2010.

This whole period is very hazy to me, mainly because it all happened so fast. My feet didn't even touch the ground and it wasn't until a good while later that I finally started to come to terms with everything.

The week following my meeting with my Consultant, Ian, was a week full of tests and one of the most awkward situations in my life so far, which I'm sure you'll all be delighted to hear about!
I had a test known as a kidney function test, to check that my kidneys were in full working order before I started chemotherapy. This was because if they were weak in any way the chemotherapy dose would have to be reduced slightly to stop it damaging my kidneys any further. As I already mentioned, some of the chemotherapy drugs could damage my heart so they also scanned my heart to check it wasn't defective in any way. Luckily both these tests came back okay, meaning physically I was fit to start chemotherapy.

There was one more thing I had to do before I could start chemotherapy and that was to store some sperm.  This was probably the most awkward thing I've ever had to do. Especially as my parents would be in the waiting room at the fertility clinic! Some of the looks people gave me while there were fantastic! I don't think I've ever seen someone look so confused and/or disgusted!

The first time I went there they told me I wouldn't be able to do it because they hadn't got the correct forms. Cue a comment from my Dad about it being a bit of an anticlimax! I was however, allowed to store some on the second visit.

I was also told that it was unlikely that I would regain the ability to have children naturally because of the strength of the chemotherapy I would be on, but I still consider myself one of the lucky ones. I know of many people who never had the opportunity to store sperm or eggs in a female's case.

The clock tower at the hospital where my sperm is stored.

Hi kids! 

I knew I was meant to be starting chemotherapy on the 27th of September. It's hard knowing that you're going to lose your hair. It's confusing to know you probably won't be able to have kids naturally. It's very hard to sign a form to say you want chemotherapy. Some people don't have treatment. Sometimes the bravest thing isn't to carry on fighting, sometimes the bravest thing is facing the fact that treatment might not be worth it. I have the utmost respect for those that choose not to have treatment. It's a fact that not everyone survives, there's nothing anyone can do about it, life is not infinite. 

I knew I wanted to try to fight though, I knew I had too much to live for to sit back and let this be the end. I knew I was doing it for my friends and family. I know if it hadn't been for them I wouldn't have chosen to have treatment. 

I had everything ready. I had everything packed. I was as ready as I ever would be. 

Decisions, decisions...

Professor Ian Lewis, my Consultant

One of the men who saved my life.

Leeds is a large city in West Yorkshire, in the north of England. I'd never really been before but in the past year and a half it has become my second home. Through all of my time travelling one particular song seemed to be on the radio all the time and I now think of the time just after me being diagnosed whenever I hear it. I'll stick it on here so you can all have a listen.

                                     

I first travelled to Leeds General Infirmary on the 17th of September to meet my consultant for the first time. His name was Professor Ian Lewis and I have to say I think he resembles a teddy bear. He is one of the men who saved my life and I love him to bits and I doubt I could ever repay him. I also met my Macmillan nurse, Carol Irving. She would prove to be amazing in the following year or so, and her expertise and care was invaluable. Think of her like a guardian angel, looking after me, my family and friends.

My parents and I sat and spoke to Ian Lewis for roughly three hours. I don't think I've ever seen either of my parents cry so much and it was more upsetting to see them upset than it was for me to be ill. Ian (yep, first name for a Doctor! On Teenage Cancer wards we always call them by their first names) told me that I would be on a three week chemotherapy cycle, with each time in hospital having chemotherapy lasting four days and three nights. I would be hooked up to a drip for four straight days each time I was in. I would also have to have something called a Portacath inserted into the my main vein leading into my heart. This port itself would be on my ribs just underneath the skin. This is where the needles would be hooked into me. This was because the chemotherapy I was on was so toxic if it was inserted into my veins it would destroy them. The image below shows where it would be put and how it works.

Diagram showing portacath

(More on my portacath later though)

Ian also told me that the chemotherapy would make me infertile, meaning I would be unable to have children naturally. I could however store sperm (more on this fun and embarrassing part of my experience later) and had an appointment booked for me to go and store some, so that I could have children via IVF later on in life. Luckily, as an IVF baby myself, I merely saw it as continuing a family tradition! 

I mentioned the statistics I had found online to Ian and he calmly told me that statistics are often misleading and can cause unnecessary worry. He used a fantastic example to illustrate how misleading they can be. He told asked me if I thought a 60% survival rate sounded good, to which I replied that I thought it did. He then put it another way. Imagine a group of five of your closest friends. Two of them would die according to a survival rate of 60%. He also explained that no two cancers are ever the same. Your cancer is a mutation of your own cells and no one else's, so statistics can often show a false picture. 

He then asked me if I wanted to go through with chemotherapy. He said it was an extremely strong chemotherapy regime (name for a collection of different chemotherapy drugs) and that it had killed people before. He explained I would be very very ill, I would get infections which would leave me in hospital for weeks at a time, I would be so tired I would need a wheelchair sometimes, I would need blood transfusions, I would be spending a long time in hospital, I would lose all my hair, I wouldn't be able to eat for weeks at a time, I would feel like living death and even after all this there was no guarantee it would work at all. It was the equivalent of having industrial strength bleach pumped into my body every three weeks. It would damage my heart and other organs because of the strength of the drugs. I was told it may shorten my lifespan and give me health problems later in life too.

 He asked me if I wanted treatment or not. I knew the only other option to chemotherapy was letting myself die. Letting the cancer win. I didn't really feel like dying at 16. I told him I wanted to start chemotherapy as soon as possible. I was starting to realise how hard it was going to be. But I was starting to realise that I could fight my cancer at least, and would for as long as possible. Even one extra day would be worth fighting for.   

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. 

The next few steps...

This is the face I probably pulled when they told me I had cancer.

September 2010.

It's hard to tell someone bad news. It's hard to tell someone that you won't be able to go with them on Saturday night. It's hard to tell someone that you're moving away. It's harder still to tell someone you have cancer. I know it's the hardest thing to tell your girlfriend you have cancer three weeks before her 17th birthday. 

Sarah Walker was my girlfriend at the time. We'd been together for nearly two years, and although she lived in Gloucester, over 200 miles away from where I lived, we were going strong. She knew I'd been at the hospital having a scan and text me while I was driving home from the scan on the 31st of August. She asked me if I was okay and I knew I couldn't say anything by text. I had to say everything was fine, even though it really wasn't. I called her as soon as I got home.

They found a malignant tumour on my pelvis and they think it's cancer. 

They found a malignant tumour on my pelvis and they think it's cancer. 

They found a malignant tumour on my pelvis and they think it's cancer. 

I can type it with ease (heck I managed to three times!), but saying it is a completely different story. I knew it would upset her so so much and it was almost as if by saying it, I was the one causing her pain. But say them I did. 

Just so you know, this part of today's entry may seem a little disjointed and somewhat scrambled. I don't really know how to say how it felt for both of us and I don't honestly believe it's possible to put it across in writing. I'll give it a shot though. 

I told her I had cancer. Her crying will stay with me until the day I die. Sarah's crying caused me to start crying too and I don't think either of us stop for a while! She honestly thought I was going to die, and if I'm really honest so did I. Sarah was a pillar of strength for me those few days and the next few months. Although we're no longer together she's still my best friend and I'm so so grateful for her. I wouldn't be here without her. Thank you Sarah! 

Sarah Walker.

June 2011

The next day, the 1st of September 2010, I had a meeting with Dr Cattermole at Hull Royal Infirmary. She would be giving me the results of the CT scan on my lungs the previous day. My parents and I were taken into a small room and sat down. The doctor looked me straight in the eyes and told me, in a quiet calm voice, "There's no easy way to tell you this but has spread to your lungs." I didn't know what to say but all I can fully remember is my Mum's grating, heart-wrenching cries. I don't think I'll ever forget it. My Dad fainted as he heard the news. It felt so strange to be the one telling my parents everything would be okay, even though I didn't believe one word of it myself. 

At this point I wanted to run away, to just leave and disappear completely. But I knew I had to stay strong for my family and friends. I had a bone scan (more on the different types of scan later on) and it revealed I had small tumours all over the top of my skull, a few on the left side of my pelvis and what looked like two small pieces on my spine. I didn't know what to feel or think. I knew I was definitely ill and I thought I was going to die. No 16 year old should ever think that. 

              My chest x-ray at the bottom showing the tumours in my lungs and at the top what a clear chest x ray looks like.

September 2010.

The correct term for a cancer that has spread is metastatic. This means it has spread to different parts of the body from the original tumour, which is referred to as the primary tumour. At this point I had metastatic bone cancer. Most likely one of the two main types of bone cancer; osteosarcoma or the rarer type, Ewing's Sarcoma.

On the 2nd of September 2010, Sarah and her Mum, Frances (Hi Frances!), both came down. I have to say they were both of tremendous help to both me and my parents. This was the day I had organised to meet up with my friends. I had to tell them what was going on and thought this was the best way. We met up in Hornsea, a small town near to me. I don't think I've ever made so many people cry! Not a dry eye in the house and a time I'll always remember. Thank you to you all for being there for me. On a somewhat less serious note, having just told my friends I had cancer I decided I wanted some chocolate of some sort (because I had cancer damn it and I wanted chocolate!). However I made the unfortunate choice of buying some Celebrations and it wasn't until one of my friends pointed it out that I realised what I'd done. 

Celebrations- The sweets to celebrate your cancer diagnosis with!

On Friday the 3rd I went for an MRI at Hull Royal Infirmary. This was to gain a better picture of my tumours on my pelvis so they could perform a biopsy of it. A biopsy is where they take a small chunk of the tumour and look at it under a microscope to determine what type of cancer it is. This enables the correct chemotherapy and/or radiotherapy to be given. Because my cancer was bone cancer I would have to go to the Royal Orthopaedic Hospital in Birmingham for my biopsy. I was booked to go on the Sunday and have my tumour biopsied on the Monday. 

I hope that's enough for today. I had to do a lot of this from notes I wrote at the time as I was so tired from not sleeping or eating. At this point I was considering how I would spend my last few months. Not speculating or daydreaming, but actually planning it. I thought I was dying. But I knew one thing was completely certain. I wouldn't give up without a fight. 

Symptoms and Diagnosis

Me and my then girlfriend (now best friend), Sarah.

London, August 2010.

Many people consider the end of compulsory education an important point in their life. With many young people being given their first taste of the working world and many others taking the first steps towards what they wish to do in the future it is an important time in anyone's life. In my case, it turned out to be even more so! Today I'm going to be covering my initial diagnosis and the symptoms I had before it, which should be enough for today!

My first proper symptom seemed innocent enough, an unusual pain in my right knee which seemed to come and go. I first started to get it around early May, just as I was starting my GCSE exams. I went to the doctors' with it but they didn't think anything of it and put me on some painkillers for the time being. After about two weeks the pain subsided and then disappeared completely. I didn't really think anything of it at the time and soon forgot about it. It wasn't until the beginning of June that it returned, somewhat more severe this time, keeping me up at night on a number of occasions! My bit of advice for anyone is if a pain is anywhere near this bad, go to your Doctor! Don't wait and see how it goes, don't worry that you're wasting their time (it's their job to deal with this kind of thing!) and most of all don't just ignore it.

Once again it went away after about two weeks and I forgot about it. I was unusually tired throughout my exams, but it isn't out of the ordinary for teenagers to be lazy and not really want to get out of bed so no one really took notice. Some days I would arrive home at about 4pm and sleep through until half past 6. Only later on did I realise that this was caused by the cancer sapping my energy as it grew.

I finished school at the end of June and went to our school prom looking rather dapper if I may say so myself! 

 

Josh and I on the left and Ruth and I at our school prom. Hi Ruth and Josh!

July 2010.

The summer holidays proved to be fantastic, if carlsberg did summer holidays this is what they would be like! At the beginning of August my doctor referred me for physiotherapy on my knee, my first appointment was to be on the 31st August. It wasn't until the second week of August that I noticed my next symptom. A large swelling on the right side of my lower back. My Mum booked me in for a doctor's appointment (My Mum is literally the best!) and we went to visit the doctor again on the 19th of August. He told me to ring up and book an ultrasound, but didn't appear too worried about the lump. Me being a 16 year old lad at the time got my Mum to ring up and book it. She was told the waiting list would be six weeks but she was worried about what it could be so did everything she could to get it as soon as possible. Luckily I managed to get a cancellation on the 31st of August. This would prove to be a very significant date in my life. 

It started off like any other day. I remember being on the phone to a bloke from Karoo trying to fix my internet, only to discover I'd put in the router password wrong! I went to the physiotherapy in the morning and the nurse gave me a list of exercises to do to help with the knee pain. She wrongly assumed it was a disease called Osgood-Schlatter disease, something to do with the growth plate in my knee not growing quickly enough. I can't for the life of me remember what I did in the time between then and my later ultrasound at Castle Hill hospital! It was later on in the afternoon that I went for my ultrasound. 

I was lead into a quiet room (my God that sounds dodgy when I read it back) and told to take my top off (O heck even worse!).  They scanned the lump with the ultrasound but it wouldn't fully fit onto the ultrasound screen. The doctor immediately took me for an x-ray of my pelvis and I didn't really think anything of it. Doctors are amazing actors sometimes, they are almost impossible to read. My Mum however, was a nurse and realised something was up but didn't say anything. This was then followed by a CT scan of my lungs, although they didn't tell me what they were scanning so as not to worry me or my Mum.

I realised something was wrong when the woman who did my CT scan wouldn't look me in the eye and tried to make small talk about my phone. Something wasn't quite right. The doctor took my Mum and I into a small side room. We sat down and she told me that there was something "not very nice" on the right side of my pelvis. She told me that it was most likely an aggressive malignant tumour. Medical speak for cancer and an aggressive one at that. I asked if I would be okay, and then answer was that they didn't know. They knew it was aggressive and that I was dying. The only way I would live was a very very harsh chemotherapy regime at least and potentially surgery or radiotherapy. It was like staring death in the face. And there was no way I was going to back down or give in without a fight. 

I don't think anyone in my family slept at all that night. I know that I didn't even close my eyes.