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!

Scan Results

Today I returned to Leeds General Infirmary to receive the results of my CT scan that I had last week. It's somewhat nerve-racking getting scan results. The reason they scan my lungs first is that they will show up any new tumour growth because they're soft tissue so any tumours will grow their first, rather than in the bone. If any tumours start growing again then I'll have to have chemotherapy again and depending upon where the tumours are, an amputation. However, all of these treatments would only be to attempt to hold the cancer off as if it returns following all the treatment I've already had it will most likely return again and again. This is way these bi-monthly scans are so important.

Scan from September 2010 before chemotherapy and the one on the right, showing the current situation.

Luck was on my side today though and my scan was clear. A small amount of scarring showed up in the top left of my left lung, as a result of all the chemotherapy I've had but apart from that it was fine. I can't even tell you how relieved I am about this and how amazing it is! It means I can relax somewhat until my next scan in June. All I have to say is HOORAY!

This weekend I'll be taking part in a road rally around Yorkshire in support of Teenage Cancer Trust. The rally will include me driving around Yorkshire dressed up as batman (and the car done up as the batmobile) completing various challenges, some of which will be fairly embarrassing for me! I know I'm not allowed to take the batman outfit off for the whole weekend! As I've said all the money goes towards Teenage Cancer Trust. This charity helped me so much through my treatment, providing support for me and making the ward in Leeds my second home. Even being back there today has made me almost miss it! Almost anyway!

I'd absolutely love it if some of you could sponsor me! It really is a fantastic cause and you'll be helping so many people. Having cancer as a young person is always something that happens to someone else, a friend of a friend. That is until it happens to you or your friend, your child or your grandchild, your brother or your sister. Then you realise how horrible a disease it is. Teenage Cancer Trust does its best to help young people with cancer and they require your help to carry on helping. Please sponsor.

http://www.justgiving.com/Nick-Massey1

Last One for March

Today is sadly the last day or March and therefore the last blog entry I'll be making.

For March at least! I will continue to blog but not every single day. I'd like to say a massive thank you to everyone who has been reading and sharing and I'm truly grateful to all of you. The amount of messages I've had from people who I've never really spoken to has been amazing and I'm love hearing from you. In many ways it has been inspirational to me to have everyone's support.

I'm not well at the moment and I won't officially be cancer free for five years. I will continue having scans every few months to ensure that my tumours haven't started growing again. They tumours are still there but fingers crossed they're dead!

I've learnt a lot from having cancer as a young person. I've learnt the names of drugs and about types of cancers which I don't think anyone should have to find out about until their about 90! It is often seen as an old persons' disease but it can affect every single one of us. It's always something that a elderly relative has, or some distant acquaintance. That is, until you get it yourself. I sincerely hope that I have encouraged at least one person to go the doctors to get something checked out. It'll have made it worth it all worth it. A few weeks or days can make the difference between life or death.

I've also learnt about what is important in life (to me anyway) and I believe (or hope) that it has made me a better person. I value things differently and I doubt an exam will ever stress me out again! It has definitely make me appreciate my family and friends more. It has made me more outgoing as a person and I'm less likely to judge someone before speaking to them. After being stuck on a ward with a bunch of strangers for a few days I suppose you have to get used to talking to people you haven't met before! The people I have met along the way have been some of the most amazing and awe-inspiring people I could ever have the good fortune to meet, and I hope I'll carry on being friends with them.

My experience has also encouraged me to start fundraising, with my current figure raised/helped to raise being around £30000. I have had so many amazing opportunities given to me. On Monday the 2nd of April 2012, I will be going on stage at the Royal Albert Hall to speak about Teenage Cancer Trust. I will be on my own in front of roughly 5000 people. Before having cancer I would've been too nervous to do it. Now, it doesn't even phase me!

I've only got one chance at life. One opportunity to live it to the full. To cram in as much as possible. To sing, dance, shout, talk, learn, laugh, love and live. I've learnt to seize every opportunity.

Many people find cancer scary and at first it is. But you learn to deal with it, to live with it. I've lost many friends along the way and not a day goes by where I don't think about them. I think about the lives they won't get to live and it pushes me to live mine to the full. Cancer isn't something to be scared of and it's that affects everyone.

There are four things cancer can't do-

It can't stop the love I have for my friends and family

It can't stop me laughing

It can't get rid of my spirit

and it can never stop me smiling.

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.

Scans Scans Scans....

Thank you to everyone who's been reading and still is. I'm extremely grateful to everyone for every share, retweet or any passing my blog on to friends. In two days time I will have done a blog post for every day of March and I hope everyone has found it interesting so far and I hope it encourages you to do something for charity.

In September 2011 I started back at Sixth Form as best I could, but I suppose it would be fair to say I wasn't really happy. I was seeing a psychologist as I still spent a lot of time wondering about things. Mainly worrying about dying and asking myself why all this had happened to me. I also really detested how I looked, as I'd been told my hair would grow back properly but it hadn't and still hasn't. I suppose this was to do with the fact that all through my treatment I'd associated my hair growing back with going back to normal, but it hasn't grown back properly and I'm very conscious of it. I can't stand it and wish it would just grow back. It gets me down a lot if I'm honest.

I had my scans in September 2011. They showed that my tumours had stayed the same and hadn't grown. The doctor told me that because my tumours were still there, he couldn't say I was in remission but he hoped that they were dead. I was overjoyed to hear this as you can imagine! It was a bit of an anticlimax really, no big party and the news that I'd be having another load of scans in two months time to see if they'd started growing again yet. This is the closest to remission I'll ever get and is the place I currently am at the moment.

It's cold when you don't have much hair!
December 2011.

Life continued as normal (or as close to normal it will ever get for me) until November 2011. My next lot of scans. These showed what they suspected may be a new growth in my lungs. The doctor told me that they would have to wait two more months before they scanned again to see if it was a new tumour. If it was a new growth than I would be having palliative care to try and buy me time. I was to spend my 18th birthday, Christmas and New Year wondering whether they would be my last. Not really a nice thought but they consumed my every waking thought for the next two months. Every night it would be the last thing I would think of and it was constantly at the back of my mind (Quite ironic really considering I had a tumour on the back of my skull!) I also sat all my AS level January exams with this hanging over me, which didn't really make them any easier. It's things like this that encourage me to live every second of life.

I waited nervously upon the scan results which would determine which path my life would go down.

Shouldn't I be feeling better now?

That was it then. Cancer treatment, done and finished. Or at least on paper. I still had scans to go, to see if I was dying or not. It would be three months before I could have these scans to tell me if I was a goner or not. I decided I'd try and make the best of the next three months just in case! After all, if I was dying I wouldn't want to be wasting time.

I spent as much time at Sarah's as possible and enjoyed the warm weather, you really can't beat the sun! I also passed my driving test meaning I could now drive (legally)! I got lost on a number of occasions purely because I could and spent so much time driving to places I've never been before. It was so nice to find places I'd never been before. I also invested in a camera, which I used to take photos of everything I did.

It was very windy here.
August 2011

I realised that everyone is only here the once. You only have one chance at life and I was going to grasp everything with both hands. I was often depressed about dying however, and worried about it so much still. It followed me around like a big black dog, always with me and never far from my mind. It meant I ended up seeing a lot of things with a bleak finality, almost as if nothing really mattered anymore and everything seemed to pale into insignificance.

My hair also started to come back slowly, it still hasn't properly grown back and probably won't ever, and although it gets me down a lot, it is a small thing to have lost.

Woo hair!

I was still horrendously tired a lot of the time though and was constantly asking myself shouldn't I feel better now? A lot of people assume that just because I'd finished treatment that I was fit and back to full health. I was nowhere near and found it hard adapting to 'normal' life as such. I'd worry about dying so much and I'd been constantly paranoid about any small pain and still do now. I had spent so much time in hospital and having seen friends pass away I also questioned the point in a lot of things. What was the point in me going back to Sixth Form if I was going to die? Surely if I was going to anyway I might as well make the most of what time I had and even if I wasn't I felt there was better things I could be doing rather than A levels. I spent a lot of time deciding whether I should bother going back to Sixth Form.

Teenage Cancer Trust had supported me through all of my treatment. They had provided all the fittings for the wards and did so much to help me. I decided that it was only fair I did my best to pay them back. Viking FM, a local radio station, run an annual Cash For Kids charity event and for 2011 they were raising money for a new Teenage Cancer Trust Unit to be opened at Castle Hill near Hull. I went on the radio and they recorded me for a series of adverts to help raise money and awareness about young people with cancer and about what Teenage Cancer Trust do. Overall we raised £30000 for TCT.
Along with this, I did a number of newspaper interviews to raise awareness for teenage cancer. I also did a speech at Hull College to a number of people who fundraise for Teenage Cancer Trust, about what the money they raise is used for. I attempted to do everything I could to help people who were in a similar situation as me.

By the middle of August I was enjoying being off but wondering what the future would hold for me. Where do I go from here? In many ways I felt lost now that I had finished my treatment. How was I meant to just go back to life as it had been before?

End of treatment!

As radiotherapy carried on my side effects became worse, meaning I was absolutely knackered all the time. Not fun at all when you have to be up fairly early to get up to drive three hours a day!

Going back and forth each day was really starting to take its toll, along with the fact I'd been unable to see my friends much. My bloods had started to go back up slightly too, meaning that although I was still very tired I was able to go shopping for the first time since February. It was a strange experience being back among so many people and almost frightening at first because I'd been kept isolated for so long. It was nice to be allowed out though!

Leeds! Fantastic for shopping!
June 2011.

The area which was being hit with radiotherapy also became very sore and the skin started to peel off. It was incredibly painful so along with pain killers I had to apply cream to it everyday to stop the skin bleeding at all or developing sores. It was painful to touch so applying the cream wasn't very fun either!
I don't have a good picture of what the area of skin looked like so I've grabbed one from google which resembled what mine looked like best.

As you can imagine, it was painful as heck.

My radiotherapy continued for the next four weeks, with me becoming progressively more tired and more bored of doing the exact same thing every day. Leeds doesn't seem that far away but when you go every single day no matter what it seemed to take forever, more so because I was only going for ten minutes worth of treatment. This is one of the reasons that it is important that more is done to establish units that can treat young people requiring radiotherapy in as many places as possible. The nearest radiotherapy centre to me is Castle Hill Hospital, which is roughly 15 minutes away from where I live. It would've saved me 60 hours travelling time and it would have also benefitted the many young adults and children in East Yorkshire who have to travel to Leeds for radiotherapy treatment. As I said earlier on it doesn't seem too far, but when travelling everyday while also feeling absolutely awful it seems a lot further. Having radiotherapy closer to home would've also enabled me to go with friends, enabling them to see what having radiotherapy is like.

On the 21st of July 2011 I had my last radiotherapy session. In many ways it was strange to not have to go back everyday and I know I carried on waking up thinking I had to go for the next few weeks! I was sad to not be seeing the nurses in the radiotherapy department anymore (that's how nice they were!) I could've done cartwheels out the door of the hospital and would've done except for the fact I was knackered! 

I had finished all my treatment for cancer. My tumours were still there though but they hoped they were dead and not growing. I would have to wait a few months for scans to check that they hadn't grown because the radiation from radiotherapy meant that any scan wouldn't show up properly. But I had finished, and now all I had to do was wait for scans and attempt to get my life back to normal. I'd always thought this would be easy but it was to prove harder than I imagined.

Radiotherapy!

Good evening all! Today I will be delving into the mysteries of radiotherapy and what implications it would have for me.

Our daily routine consisted of getting up at about 9, getting ready and leaving for about 10:30. We'd then get to Leeds at roughly 12:15, we'd buy our sandwiches from the shop and go down to the radiotherapy department. The treatment itself took roughly 5 minutes, but we had to wait for up to an hour before I could go for my radiotherapy. We would then go back home, taking another hour and 45 minutes. This was my daily routine for six weeks.

Radiotherapy works by targeting high energy radiation at the cancerous cells. It damages there DNA, which kills them, however it also kills non-cancerous cells, meaning that the surrounding area is also damaged. Because of this the skin where my tumour is became very very sore after about the second week of radiotherapy and began to peel off. In many ways it was like really bad suntan and it was extremely painful to touch. Because of where the tumour is the radiotherapy had to pass through my intestines, meaning that after a few weeks of radiotherapy I could potentially begin to get very painful stomach cramps.

One of the radiotherapy machines at St James' Hospital, Leeds.
June 2011

The other major side effect of radiotherapy was tiredness. Not just slight tiredness but extreme tiredness. Some days I would feel so tired I wouldn't want to get out of bed at all, but I would still have to, so I could go to Leeds. This side effect also meant that I got worn out a lot quicker than a healthy person would, and mixed in with the fact I was still feeling the side effects from my high dose chemotherapy led to me being extremely tired at times. Furthermore, because of the fact that radiotherapy effects last a long time, even now I still get tired really easily and some days I am really tired even though it's been a good few months since I finished radiotherapy.

On Friday the 10th of June 2011 I had my first day of radiotherapy treatment. 

My first two weeks of radiotherapy went ahead without event, but by the end of the second week I was beginning to feel fairly tired. This was probably a combination of the 140 mile round trip I was making each day, the chemotherapy's late effect and the effect of the radiotherapy. It also seemed to be going really slowly and I was missing being able to seen my friends, mainly because they were busy with exams. I felt quite alone at this point because I'd lost contact with my friends because they were busy with exams and other stuff. I also didn't see any of my friends from the ward because I was no longer an inpatient so didn't have a reason to go to the ward which was at a different hospital in Leeds.

I was counting down the days as I continued with my radiotherapy but it was seeming to go so slow and I was only two weeks in and the effects so far had been relatively modest. The worst bit was probably knowing that as it continued I'd carry on getting more and more tired each week.

Radiotherapy Preparations

Over the next few months my bloods continued to go up and down, meaning that I regularly needed blood transfusions at Hull Royal. The community nurse would come to my home and access my portacath to take some bloods. The blood would then be taken to a lab at Hull Royal and they would call back a few hours later, telling me whether I would need to come in for a blood transfusion. More often that not I did, usually requiring red blood cells or platelets. It would usually take a good few hours for me to arrive in Hull and then for the blood transfusion to be set up. On a number of occasions I would arrive at the hospital to be told that the blood was having to be brought over from Leeds, so was still somewhere on the M62!

Blood, blood, galleons of the stuff! Give me all that I could drink
and it would never be enough!

I really can't stress enough how vital having these blood transfusions was for me at the time. If my level of red blood cells fell below a certain level my organs would start to fail, and if I didn't have enough platelets I would get internal bleeding as my blood would be unable to clot properly. That's why it's so important for people to donate blood. I'm just one person who it was vital to and there are many other people who require blood on a daily basis. If you haven't already done so, please donate blood, it's really simple to do and it doesn't hurt at all. 

I had my next lot of scans and they came back saying that everything was stable and that my tumours were still the same, but nothing new had grown. I went to St James' Hospital in Leeds to meet my radiotherapy consultant because I was going to be having my radiotherapy there. It took roughly an hour and forty-five minutes to get there and I was to be going back and forth to here everyday for six weeks when I started my radiotherapy. 

Because of the high dose chemotherapy I was told that I couldn't have radiotherapy to my head or lungs because having the radiation pass through would damage my brain and lungs too much, causing my lungs to solidify and my brain to stop working in certain areas, causing me to lose my mind. I would only be receiving radiotherapy to my main tumour, on my right iliac bone, part of my pelvis. 

How they explain radiotherapy to kids!

I was lined up on a radiotherapy machine and given a CT scan, to ensure that the whole tumour was hit with the radiation. I was also given four small tattoos, which then lined up with lasers to ensure that I was always in the correct position when receiving my radiotherapy.

My bloods started to go back up and I was booked in to start my radiotherapy at the beginning of June.

I was a free man!

On the night of the 4th of April 2011, I finally got home. To my own home, my own room and my own bed. It was frankly amazing to be home and simple things such as seeing my cat again and having a double bed again made me so happy. I don't think I've ever been so happy to be home! It was bliss.

I was still very weak though and I could only eat small portions but I was slowly building my appetite back up. The reason my appetite was so poor was because while I was being fed through my port, my stomach was completely bypassed, meaning that it shrunk, so to suddenly start eating again came as a shock to my body and it would take some time for it to get back to normal.

My consultant still wanted to see me, so every week I had to go with to Leeds for a check-up. I was still at risk of catching an infection or for my kidneys or liver to stop working, so I was confined to being with a few people at a time until my bloods were high enough. I wasn't properly allowed anywhere busy for the next three months.

I tried everyday to get out and do something, starting with walks around my village. Being a bit lazy I often couldn't be bothered to walk very far but I started talking photos while I was out and I think in many ways I appreciated how beautiful the area around where I live is.

Also it was sunny! I found this strange having been stuck inside from the beginning of March!
April 2011.

Roughly a week after I had left hospital Sarah came to visit. We didn't really do all that much, mainly because I was limited as to where I could go but we spent ages doing this huge jigsaw Sarah had got me to keep me occupied in hospital, which we eventually got finished at about 4am one morning! We also went for walks around where I live a lot. It was amazing to see her again after the time before, when I'd been attached to a drip and very ill.

Sarah and I. I looked pretty pasty after a month of being in hospital!
April 2011.

I also properly started to learn to drive, which in many ways was very strange for me. I could drive around Hull while learning but I wasn't allowed to get out in case of infection! I spent a lot of my time reading and I started doing more painting for once, now that I had the time! It was like being an old person haha! 

I saw many things differently after my high dose chemotherapy and Beth passing away. I realised that you only get to live one life and there's no point wasting any of it. I realised I have to make the most of it, because none of us are here forever. If you want something, go for it. I knew I was still very very weak and ill. Even a small infection could still kill me, but I also knew that I had to struggle through this to be able to live the rest of my life. Cancer had taken 7 months of my life so far and it had also taken my friend's life. I knew that I would have plenty of time to make up for when I was well, and I decided I would grasp everything in life, take every opportunity, do everything 100%, never give up and to always try and do things that bit better. I also decided I had to give something back to all the people who'd helped me. 

I was told by my consultant that although I had finished my chemotherapy, as soon as my bloods were higher I would begin radiotherapy. The idea of this would be to kill off any remaining cancer cells in my main tumour. I was to begin this at the beginning of June, when my bloods should hopefully be high enough. 

Onwards and upwards!

Goodbye Leeds!

I'd like to take to say a massive thank you to everyone who has been reading and sharing so far. It's been truly humbling to hear your thoughts about it and I'm grateful to all of you.

Fun on Ward 78!

I'll start where I left off last time with my bloods starting to go back up again. Slowly at first but within a few days they had started to go back up. I was still very ill though and my throat was unbearably sore.

After many days of watching food programmes on tv I decided the least I could do was try and eat something. I pressed the button on my morphine pump until I was absolutely out of it and then tried to sip some water. In hindsight it probably would've been wise to wait a while before attempting this. The sip was so horrendously painful the thought of it is making me shudder even now.

Over the next few hours and days I repeated this painful process, I worked out afterwards it took me approximately two days to drink half a glass of water a sip at a time. I can't say I didn't try!

I continued getting a shower everyday but because of the morphine I was beginning to hallucinate. You know something isn't quite right when people walk past you in the shower of your isolation room and greet you with good evening!

Slowly but truly I started to feel a bit better. I started to eat again slowly, one morning wake up and deciding toast would be what I would next conquer. It hurt so so much but I managed it and although it took my and hour and a half, it was the best piece of food I've ever eaten.

Beginning to eat and drink again was in many ways similar to getting a shower everyday. Whenever I'm stuck with something or annoyed I think, if I can go through high dose chemotherapy I can go through anything. It's all just small steps. These two things were my first goals and I've never looked back. I know I can do anything I put my mind to and so can anyone else. They seemed like two big tasks at the time and they were, but I did them both.

Nothing is impossible with determination and perseverance.

The days of this week seemed to blend into one because of how ill I was. I could still barely walk and I had lost a lot of weight. I could fit my hand around my legs at the widest point, but as I started to eat the nurses decided it would be okay for me to be taken off being fed through my portacath and they also decided I no longer required the morphine.

Everything seemed to be going well for me and I was so positive. That was until my Mum came in to wake me up on the Sunday morning. It was Sunday the 4th of April and my Mum came in crying. I asked why she was crying and she told me that Beth had passed away that morning. I cried so so much, I'd been looking forward to going to see her one last time but now I never would. More and more I wished I'd gone to see her when she left the ward. I'll never let an opportunity go again. If you love someone let them know while you can. It's the words you want to say but never do that you'll regret the most.

The doctors also said that if my bloods stayed up then I may be able to go home. They would check them on Monday and if they were fine I'd be able to go home. However if at home I'd be unable to go out with groups of more than ten for the first two months and no busy places for three months. This included Sixth Form, Hull or any form of public transport.

Both I and the doctors were amazed at how I'd done. I'd been told that I would be in for four weeks at least. I'd ask my consultant, Bob, had anyone done it in under four weeks. He laughed at the suggestion I'd do it in under four weeks and said he had only seen it happen once in the last ten years.

On Monday the 4th of April they checked my bloods and they were all okay. They told me I was allowed to go home and after staying on the ward for pizza (Monday is always pizza night on the ward!), I finally left Ward 78 at Leeds General Infirmary.

I completed my high dose chemotherapy in three weeks and five days.

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 1!

On Monday the 7th of March 2011 I returned to Leeds General Infirmary to receive the results of the recent chest CT scan. They showed that the grey area had been infection and that the antibiotics had got rid of it. This meant I would be starting my high dose chemotherapy the next day.

I had to sign a form stating that everything about high dose chemotherapy had been explained to me and that I knew the dangers. I knew that I would receive very very strong chemotherapy for a week, followed by having my stem cells which I had harvested in November, returned. This would enable my immune system to come back so that I would be able to fend off infections. It would however take a number of weeks for my immune system to return. I would also be a risk at many various complications. I would most likely be fed through my port, on a substance called TPN (Total Parental Nutrition) which would keep me alive and hydrated while I was unable to eat or drink at all. I would also be on a morphine pump, which would give me a constant supply of morphine because of the amount of pain I would be in (For anyone looking to buy one of these for personal use, they're hard to come by. Trust me, I've looked!) I would be in for at least four weeks, in isolation. For the three months after my high dose chemotherapy I wouldn't be able to go anywhere near big crowds. I would also be at risk of having my lungs fill with fluid, my kidneys stopping, my liver stopping, going into a coma, catching a life threatening infection, just plain old death and a whole other bunch of fun fun things!

It was somewhat unusual having to sign a form with all these things listed on it but I realised this was the only way to kick this thing's arse! Cancer picked on the wrong guy when it started with me and I was going to show it a thing or two!

The drugs I would be on for the first week of chemotherapy would be busulfan and melphalan. I had to take the busulfan in tablet form, which meant I was taking about 140 tablets a day! On the last day of the first week I was given the melphalan through my port. I was also be on hydration for the whole of the week, to stop me getting dehydrated. This meant I was attached to the drip stand 24 hours a day for a few weeks.

I was put in Room 8 on Ward 78 as it was the isolation room, as about a week or so after the chemotherapy had been given my bloods would drop, meaning I would have no defence against infection and would be confined to my room.

The first week of my high dose chemotherapy passed almost without incident, and I to get out into the dayroom as much as possible in this week because I knew within the next week or so my bloods would fall and I wouldn't be able to. This was just the start and I knew it was going to get a whole lot worse. Worse than I could ever imagine.

For an indication as to how much morphine I was on, look at how huge my pupils are!

Surprise!

My high dose chemotherapy was to be the hardest part of my treatment. I was absolutely terrified, having seen two people go through it before. I was told I would be unable to get out of bed, unable to eat or drink and basically unable to do anything. I was expecting to be very very ill. Obviously, I was looking forward to it!

Who needs eyebrows anyway!

March 2011.

Before I could start my high dose chemotherapy I would have to have scans of all my tumours, so they could assess them and see how they were shrinking. I would also have to have my kidneys and heart tested again, to check they were all working.

The doctors also had to send my scans to the surgeons at the Royal Orthopaedic Hospital in Birmingham so they could assess whether surgery was an option. They reported that it wasn't recommended at all, because my tumour was so big removing it would leave me severely disabled and most likely in a wheelchair for the rest of my life. Because of this I was told that a few months after my high dose chemotherapy had finished I would be having six weeks of radiotherapy.

I had a CT of my lungs and skull, along with an MRI of my pelvis and a full body bone scan to check up how my tumours were doing. They all appeared the same but what appeared to be a new growth had shown up on the CT of my lungs. If this was in fact a new tumour I would be unable to have my high dose chemotherapy and there would be nothing that the doctors could do to treat my cancer, they would only be able to buy me time. My consultant, Bob, hoped that it was just an infection and put me on some antibiotics and told me I would be scanned again in two weeks. If the grey patch still showed up on the scan then it would most probably be tumour and there would be nothing more they could do for me.

Because I had to wait to find out if this was indeed a new tumour before being allowed to start high dose chemotherapy, I was put on an interim chemotherapy for one session. This was to stop the tumours being able to grow in between the end of my VIDE chemotherapy and the beginning of my high dose chemotherapy. Luckily, this chemotherapy only lasted three days as opposed to the four days VIDE had lasted for and because it wasn't as strong I wasn't as ill as before, my eyebrows even began to reappear (albeit briefly).

As I waited for the scan results at the beginning of March it dawned on me. If they came back and it was a new tumour growing I would be dying, but if it wasn't and whatever it was had gone I would be starting what could potentially be half a year in hospital and could even kill me anyway. I was terrified of either option in all honesty but I knew I still wanted to fight this stupid horrible disease no matter what. I'd been told that it would be the worst four weeks (at least) of my life, a living hell. I was as ready as I ever would be.

Stem cells!

It's only when you're bald that you fully appreciate exactly how much your hair helps keep you warm in the winter. Towards the end of November 2010 I really started to feel the cold a lot more because I was starting to feel more and more ill.

WARNING-Sciency bit!

I regularly had to go to hospital for blood transfusions to keep my red blood cell count high. The red blood cells are the ones which carry oxygen around the body. As chemotherapy attacks all fast replicating cells in the body (hair, finger nails etc) it also stops your bone marrow producing blood cells. This includes red blood cells, platelets and white bloods cells (neutrophils being a type of white blood cell). This is why people on chemotherapy are tired and more prone to infection. As the body stops producing the white blood cells the immune system is weakened, meaning that infections can't be destroyed. The reduction in red blood cells means that less oxygen is carried in the blood and this leads to tiredness, and in extreme circumstances death. The platelets are what causes the blood to clot. The body also stops producing these, meaning that people on chemotherapy will bruise more easily and bleed a lot heavily if cut. Because of this, anyone on chemotherapy has to have their blood levels checked regularly, and if a certain level is not met then the patient must undergo a blood transfusion. This isn't possible for a lack of white blood cells however, because they cannot be transfused.

The things you learn as a cancer patient ey!

The blood transfusions were given just like chemotherapy was, but it only took a number of hours rather than days, and I was able to go to the children's ward at Hull Royal Infirmary for them, although as this wasn't a TCT ward and it was full of babies with infections I had to be put into an isolation room that was more designed for babies than a 16 year old such as myself.

The week following my third chemotherapy I started with my GCSF injections. These stimulated my bone marrow so that it produced more stem cells so they could be harvested. These would be put back into me following high dose chemotherapy so that my immune system would come back faster and so the high dose chemotherapy didn't just kill me outright. I would have this high dose chemotherapy following my six cycles of VIDE chemotherapy but they needed to harvest the stem cells a few months in advance.
I did my own injections, everyday for a week.

These hurt quite a bit.

November 2010.

Following the week of injections I went to Leeds to have my stem cells harvested. I had a tube put into my neck, called a vascath. It went into my jugular vein and stuck out my neck a good few inches. It had to be inserted under a general anaesthetic at Leeds General Infirmary. This meant I could have my stem cells harvested through this rather than having to have a needle in each arm, as my blood would be taken out and passed through a machine, which removed the stem cells, before being put back into me.

Example of what a vascath looks like, it was about as comfortable as it looks and a bloody pain to sleep with! 

November 2010

I was hooked up to a machine that harvested my stem cells over about five hours and I managed to produce a huge amount, even the nurses were impressed! I returned to Leeds General Infirmary and they just pulled my vascath out of my neck! I didn't expect it at all! No anaesthetic and I didn't feel any pain, just a very very strange feeling of a tube moving from inside my jugular vein, something I never want to feel again if I'm honest! 

The machine which harvested my stem cells. Lots of my blood in them tubes!

November 2010

Chemotherapy was also starting to make me go a little crazy too......

Or crazier, at least!

November 2010.

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? 

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.