Saturday, 31 March 2012

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.


Friday, 30 March 2012

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.

Thursday, 29 March 2012

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.

Wednesday, 28 March 2012

You're here for a good time, not a long time

On the 25th of August I went somewhere that I never thought I would go and I had one of the most amazing weekends of my life. I went to Leeds Festival 2011!

Tents. So many tents.
August 2011
Two of my friends asked if I fancied coming about a week before it started. I applied my thinking of you're only here once and jumped at the chance and I'm so glad I did. It was like nothing else I've ever been to before and it was fantastic. It made me realise that you might as well have fun while you can, because you never get a second chance or a chance to rerun anything in life. It's all first time round or never. With my scans in roughly 6 weeks time I thought I'd take the opportunity to enjoy myself. I haven't really figured out how much I drank but it was an awful lot! 

I saw Muse, Pulp, Tim Minchin, met Ed Sheeran and saw a ton of other bands. It was nice to not be the 'cancer patient' as such, to be treat like normal. Although a few people did see my extremely short/shaven hair and mistake me for a drug dealer (for the final time, no I don't have any ketamine!)

This is what life is about. It's about seeing bands live, having a good time with friends, meeting new people, experiencing new things (no I don't mean taking new drugs!) and generally having fun! If there's one thing I've learnt from being ill, it's that you should take every chance. Tell people what you think, if you love them for goodness sake tell them! If you want to do something go out and do it! Live your dreams each day and if you can't do it then work at it until you can. Nothing is impossible and you'd be surprised what you can do. There's an opportunity in every adversity and even when things seem at there worst, try and take the best from everything. There's a world out there and I aim to see as much of it as I can. 

Many people are alive but not all of them are living.

It was a few weeks following Leeds Festival that I returned to Sixth Form in Hornsea. I was expecting to go back to normal but after my first few weeks I realised that it wasn't. I realised that the place I'd left in July 2010 was gone and although the building and the majority of the people were the same, it wasn't the same to me. Things had changed while I'd been away and because I had missed out a year I would be in the year below, starting my AS levels.

It was hard settling into a new year as I had to get to know people who I hadn't previously talked to. Luckily the majority of them proved to be friendly, although as a few didn't know about me being ill they wondered at why I choose to sport such an unconventional hairstyle! Some were nervous to ask me anything about having cancer but I'd like to make it clear to anyone reading that I'd be more than pleased if anyone has any questions about it! 

It was hard and I struggled but I got on with it as best I could. It was hard going back though and nothing was the same. I felt detached from everyone and was in many ways upset about going back.



Tuesday, 27 March 2012

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?

Monday, 26 March 2012

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.

Sunday, 25 March 2012

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.

Saturday, 24 March 2012

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.


Friday, 23 March 2012

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!






Thursday, 22 March 2012

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.

Wednesday, 21 March 2012

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.

Tuesday, 20 March 2012

Always With Me

This is probably going to be the hardest thing I'll ever had to write. Today is going to be about one of my friends I met on Ward 78. I know words or pictures could never do her justice but I'll give it my best.

Beth Fitzpatrick loved to sing, dance and act. She loved Wicked!, Legally Blonde and any other musical you could think of! By the age of 14 she had performed on stage numerous times, had performed in the West End. She was 14 when she was diagnosed with a very rare form of cancer called Neurodocrine carcinoma which is normally only found in adults. It was in her pancreas, stomach lymph nodes and liver. She began her chemotherapy on Christmas Eve 2010.

Beth Fitzpatrick
October 2010.
I first heard of Beth when I was in for my chemotherapy on the 27th of December 2010. She was a new name on the board with all the patients in at the time on and I wondered who she was. Over the next few months she was to become my closest friend on the ward. I taught her and her Mum, Alison, as much as I could about being stuck on the ward. I let them know that you feel a lot better if you get up and get showered when you can and that getting into the dayroom was the best way to pass the time.

Because of where Beth's tumours where she was always a lot sicker than me, often throwing up and being unable to eat. I have to say I often felt sorry for her because she was younger than me and I wish it had been me that had been throwing up and unable to eat rather than her.

Beth's first scan results in January revealed that her tumours had stayed the same and the chemotherapy hadn't shrunk them, but they hadn't grown at all and the sickness which was being caused by the tumours in her stomach had lessened slightly.

She continued with chemotherapy and was very ill. She got many infections and needed blood transfusions. I helped as best I could, telling Beth and her Mum to ask the nurses to start them as early in the morning as possible so they can get home quicker, and showing them how to work out how much longer the blood would take to infuse. Waiting for blood or hydration to finish is the most boring waiting game you can imagine.

Beth's Mum, Alison (Left), Beth (Centre) and Beth's Dad, Ed (Right)
We also had many laughs on the ward, watching Big Fat Gypsy Wedding and laughing at some of their names! My Mum and Beth's Mum supported each other and me and Beth both knew when they'd been for a cry because they'd come back with red eyes and they would both still deny it! Our chemotherapy always seemed to be on at the same time every few weeks so she became one of my closest friends on the ward.

She was in with an infection when I started my high dose chemotherapy (at the beginning of March 2011) and she was very ill, being confined to an isolation room. She had scans on all her tumours in mid March.

Beth Fitzpatrick and Angela Griffin at the Ward 78 Official Opening
19th March 2011.
The ward was officially opened on Friday the 19th of March 2011. It had already been running for about 8 months but this was the official opening attended by the press. Both Beth and I got interviewed by the press and we both got our photos taken with Angela Griffin, who was opening the ward.

On Monday the 21st of March Beth received her scan results. They showed that her tumours had spread and her liver was starting to fail, causing her body to stop draining fluid. She was told that there was nothing they could do and that she was dying. They offered her surgery on her liver but there was a chance she would die during the operation and they also offered her more chemotherapy but she refused both. She'd had enough of hospitals and of being ill and decided to go home. 

Sometime the bravest thing to do isn't to fight on. Sometimes the bravest thing is knowing when to stop.

I remember sitting in room 8 and my Mum coming in crying. She told me that Beth was going home. I wasn't allowed out of my room because I had no defence against infections and Beth decided not to come see me because she was worried about upsetting me. I tried to get out my room to see her but I wasn't allowed because if I got an infection I would most likely die. Not leaving my isolation room to see Beth one last time will always be the biggest regret of my life.

Beth spent the next two weeks with her parents, listening to her favourite music and just being with her family. She slept a lot, but she wasn't in any pain.

On the evening of the 2nd of April, Beth said goodnight to her parents and told her she loved them, before going to sleep.

On Sunday the 3rd of April, Beth gave her Mum her card she had spent three hours making for her. She passed away that morning.

It was Mother's Day. 

Beth Fitzpatrick on Ward 78.
March 2011.
Not a day goes by where I don't think about you Beth. You've taught me to make the most of my life, to dance and sing as much as I can and to enjoy whatever I do. You've inspired me in everything I do and you've showed me the true meaning of bravery. You've taught me never to waste an opportunity and made me appreciate everything I have so much more. You'll always be in my heart.

RIP Beth Fitzpatrick. 

Monday, 19 March 2012

High dose chemotherapy- Week 2!

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


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

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

Woo my stem cells were in that freezer!
March 2011.
While I was on high dose chemotherapy my Mum had to stay in the parents' accommodation building opposite the hospital, called Eckersley House. My Dad runs his own business so had to carry on working,  coming to see me on weekends. I always looked forward to my Dad coming on weekends because I missed being with both my parents while I was stuck in hospital.

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

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

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

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

Sunday, 18 March 2012

Happy Mother's Day

I've decided that I'm going to use today's post to write about someone else who was badly affected by me having cancer, in many ways worse than me. Today's blogpost is going to be dedicated to my Mum.

None of us would be here if it wasn't for our Mums. At the very least they carried you for nine months and in most cases they love and care for you always, and even if you don't always like each other, you love each other all the same.

My Mum, Sandra.
August 2011

From the moment I was diagnosed my Mum was there for me, whether I wanted her to be or not in many cases! She put up with me being moody or upset, irrational or just plain old annoying. She saw me go through the worst, at times on my high dose chemotherapy she would have to leave the room to cry because of how ill I looked and how bad she felt that she couldn't be the one in pain rather than me.

Although she cried and cried when I was first diagnosed, she was always the one who would tell me that everything would be okay, even if she doubted it herself. No Mum should ever have to worry about their child dying. My Mum was one of the people who kept me going when I was at my worst. She reminded me why I was fighting and I couldn't have done it without her. 

On the ward, my Mum was always the one who cooked my food and made me drinks. She helped me and kept me motivated, just by talking to me. 

My Mum got to see me get better following treatment, but some Mums don't get to. I can't even begin to imagine what it's like for a Mother to lose their child but I know that it's hard enough just to lose friends. Every Mum on Ward 78 truly did everything they could for their child, and I'll never forget the red, tearful eyes of many of them when they had been told bad news or had just been having a bad day. 

Even though the child is the one with the cancer it is often the Mum who suffers the most having to watch and being powerless. Having cancer really made me appreciate my Mum and although I wish it hadn't been so serious, I'm glad it made me realise how lucky I am.

Happy Mother's Day Mum.

Saturday, 17 March 2012

The one day take over!


Today I'll be handing control over my blog to Sarah. I'm going to let her give her experience of being the partner of a teenager with cancer. I'll hand you all over to her now, and for any keen female fans I'll be back tomorrow!

First off, I am really sorry about Nick his extremely big head! Secondly, I'm terrible with words and always have been, so I'm sorry if this part of the blog doesn't live up to the standards that Nicholas has reached.

Nick and I met in 2009 at a family friends and his best friends leaving party. We had met several times before this that consisted of me thinking he was a total idiot whilst he spilt fanta down himself (we were only 9 though...). We battled the 200 miles between us and made it a year and a half before the day I remember so well came.

We had spent so much time together in the summer holidays of 2010. The week before Nick got diagnosed we spent a day in London with his parents, going into shops, pubs and having food. It was such an amazing day, walking around in the sun with no worries accept whether I had enough money to buy something from GAP. Thinking back, everything was so easy and I had nothing really to complain about.


On the train to London
August 2010



It was Tuesday the 31st August. I don't remember much about the morning. I know Nick had gone to the doctors about his knee pain and he was having another appointment later on. I was creating a collage for a family friend, when my mum came into the dining room. I told her how worried I was about this appointment and how I thought it might be serious. She told me not to worry as it was probably nothing.

Nick text me clearly stating nothing was wrong, so I calmed down. Then the house phone rang. My younger sister passed it over saying it was Nick and he sounded funny. I went upstairs and closed the door.

That's went it happened. He had cancer. It hit me like a train. I cried. I remember crying often in the few months following but not as prominently as I remember this. I curled up into the space next to my door holding myself. I had done what no one should do, and I regret it every day since. I had killed him off. I was grieving for him before we knew the extent or even the type of cancer he had. I knew so prominently in my mind he was going to die. My grandmother had died of cancer and I would lose the person closest to me to cancer as well.

I started my first day of sixth form on the Thursday. My mum had phoned up in advance to tell them that I wouldn't be in all day because I was going to see Nick and spoke to my head of sixth form to explain the situation. I saw him, my lovely head of sixth form, after assembly and burst out crying. I couldn't control myself, I was doing what an overwhelmed child does. I was sobbing and I couldn't stop. I only learnt how to months afterwards. I've never known so many people who I thought wouldn't give a damn actually talk to me with words of comfort.

I went to Nick's house, unsure of what I was expecting. He had changed in my mind, but when I got there he was exactly the same. He was my Nick. Lanky, scruffy Nick. But he was Nick with cancer and that took me a while not to associate cancer with my best friend.

I didn't cry in front of him once. I am proud that I stayed strong enough to be able to say that. Every night, at the b&b I sobbed, and so did my mum. He had become like a son to her and my dad, and a brother to my sisters and now brother-in-law.

Over the next few days I learnt how he was going to become infertile and suffer from many different side effects.

For what seems like an eternity after I went to see Nick, I would go to school on the days that my mum could convince me to go in. I would come home and lie on my bed crying until dinner, eat a small portion of food then go back to crying in my room. Sometimes my mum would cuddle up next to me and cry with me. I know I put her through pain by being like this, but it was dark and there was no end. Nothing could change Nick having cancer.

My family and friends were amazing. Although, I am going to be slightly selfish now and say that as a word of advice, if you know anyone who has a partner/friend/family member suffering from cancer, remember that anyone. I was appreciative of everyone asking how Nick was doing, but I felt like screaming and pointing out that I was there too. I know I am wrong to say it, but I felt alone. Nick had everyone behind him and I felt that I didn't always have people behind me. I had to be there for Nick but no one was there for me.

I received a card from a woman I babysit for and even thinking about it now makes me want to shed tears. She told me how she had a boyfriend when she was 15, who had a heart attack and died. I was taken aback by this information. She said how she knew it was different, but she knows how it feels to be young and to lose someone close.

Nick and I both started to write letters and kept a cancer diary to try let our feelings out. Sometimes it worked, sometimes it didn't. I think it was just one of those things to try and help in a small way.

Over the next few months, I travelled to and from Nick's. I stayed only briefly in hospital with him twice. I watched him in pain, unable to help. I watched him have food, from bags going into his veins as he was unable to swallow. I didn't recognise him at the train station the first time I saw him bald.

I know I helped though. When he was feeling down, I was a phone call away, even at 3 in the morning. I bought him a 500 piece puzzle to keep him busy (still thinks he hates me for that though!). I made him watch a film instead of day time TV while he was on high dose, just so he wouldn't become more irritable with everyone around him (he definitely hates me for that one). I convinced him to get a shower every day, just to give him a bit of a boost and something to aim for.

We had our own Christmas together and spent New Year’s with each other. It was lovely, and I began to forget that he had cancer except on his bad days.


I would tease him something chronic. I put an afro wig on him and drew on his eyebrows.
Stunning, don't you think? I put googly eyes on the back of his head and would pretend he was a bongo drum. Oh the laughs we had!

Before I started this post, I thought of so many different things to say. But when it's finally come to it, it's hard to recall. It has gone so quickly and I am grateful for the speed, even if it meant the end of what Nick and I had at the time. We have grown now, matured beyond our years in some ways. But tried to reclaim the year and a half plus of what we miss on the last of our childhood.

There are a few key things I would like everyone to remember. When you feel low, there is always someone worse off then you. If you get some illness or symptom then DON'T go on the internet (at one point I thought Nick had Osteosarcoma and thought he might have to have his leg amputated). Never think the worst. Medical science is rapidly evolving and a cure or an alternative might be just round the corner.

Thank you to everyone for taking the time to read my post today, but mainly a massive thank you to everyone who has read any of these blogs. I am constantly being told by Nick how happy he is with it and after having cancer, well I suppose you try and get anything to be happy for. But this is more than that. Thank you for putting a smile on my best friends face, each and every day.

Friday, 16 March 2012

You'll Never Walk Alone

I'm going to take a bit of time out today and write about something else before continuing with my high dose. Today I'm going to write about how my then girlfriend, Sarah, helped me.

Sarah and I at Rosedale, North Yorkshire.
It was bloody cold.
October 2010.

Sarah was 16 at the time of my diagnosis and although she lived 200 miles away from me we had been together a year and a half. When I had to tell her three weeks before her 17th birthday, that I had cancer and that I might be dying I felt like my life was collapsing. I don't imagine it's ever easy to tell someone, but to tell someone at such a young age was something I wish I'd never had to do. I never want to hear anyone cry like she did the first time I told her, it was so awful for me to hear. I felt so awful for being the cause of her pain.

I was so terrified of dying and I had no idea what I'd do if I was. Sarah would always be the one who I spoke to about this, no matter what time. I honestly can't remember the amount of times I rang her at 3am so upset and worried about dying. She was always there for me.

When I lost my hair in hospital and she saw what I looked like bald, she cried so much but she was always there to support me when I needed it. She was one of the only people to see me when my face was covered in spots and she tried her best to make me feel better about it, although I still thought I looked like the creature from the black lagoon!

Sarah and I again (well in my mind anyway).
She was a constant support and helped me all the way, even to the detriment of her AS levels, which she is now resitting along with me! We spent New Year together and she came to see me at every available opportunity. When she wasn't able to visit because of work or sixth form we would spent quite literally hours on the phone everyday, and I knew I could (and still can) talk to her about absolutely anything that was worrying me.

Sarah also has custody of my sperm, meaning that in the event of my death she would be able to use it to have my children, meaning that even if I die I can still have children. I've always found the idea of this slightly strange but also quite interesting. How many other people can claim to maintain the ability to have kids after they've died?

I would've done anything to have spared Sarah from having to go through everything with me, I even considered leaving her when I was diagnosed so she didn't have to. But she said she wanted to help me as much as possible. In many ways it was even worse for her than it was for me. I had charities such as Teenage Cancer Trust there to support me but there isn't anyone to support partners of cancer patients, except for their families and friends. This often means a lot of pressure is on the girlfriend/boyfriend/husband/wife and they often need someone to turn to themselves.

I'd like to say thank you to Sarah's friends and family for supporting her support me. I'd also like to say thank you to one last person. Sarah. She cared for me and told me everything would be okay, even though she sometimes didn't believe it herself. I'll always be grateful to her and she's still the person I fall back on for everything. I'd be completely lost without her.

Thank you Sarah.


Thursday, 15 March 2012

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!


Wednesday, 14 March 2012

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.

Tuesday, 13 March 2012

The End of the Beginning

Looking pretty good for a guy with my eyelashes.
December 2010.

I began my fifth chemotherapy session on the 27th of December 2010, two days after Christmas. By now all of my eyebrows and eyelashes had gone and I looked like a really rubbish alien! I mean if you're going to be an alien at least have some extra arms or something decent. Sarah was off Sixth Form for the Christmas holidays so she was coming to stay for a few days and arrived on the ward on the 29th. We spent one night in hospital before both returning back to mine after my chemotherapy had finished. 

I received more scan results in early January. They showed that my tumours had continue to shrink but I still had tumours in my lungs, on my pelvis and on my skull. Furthermore, because the tumour on my pelvis hadn't shrunk enough it seemed unlikely they would be able to perform surgery to remove it. I would instead be having radiotherapy to the area following my high dose chemotherapy.

It was worrying to hear my cancer being discussed by the doctor. To hear him tell me what would and could happen to me. For him to tell me that even after all this treatment it could still come back and start growing again. If it does start to come back then any treatment would most likely be just buying me time. I live with the fear that it's going to come back everyday and it's always at the back of my mind. I suppose it helps me put things in perspective and encourages me to live each day to the full as much as I can. It was also pretty scary when he sat me down and told me there was a chance that the high dose chemotherapy might kill me in a number of ways. My organs could fail, I could pick up an untreatable infection, I could get brain damage, I could pick up a virus which could make me go blind, become paralysed or just kill me, I could react badly to the high dose chemotherapy and a million different other ways. At the very least they predicted I would be spending between 4-12 weeks in hospital in isolation. They hadn't seen it done in less than 4 weeks for over ten years. Many people end up spending up to 6 months in hospital. Some people never get out at all.

I was starting to prepare myself for this high dose chemotherapy. I had never really been a fan of hospitals and was just able to bear the four days it took for my chemotherapy and I wasn't sure how I'd manage for at least 4 weeks. I was told I wouldn't be able to eat or drink for weeks at a time and I'd be fed through a tube.

I had my last VIDE chemotherapy on the 18th of January 2011. I have no idea why but this last chemotherapy seemed to go on forever. I was unable to sleep for the entire four days and was so irritable all the time. I couldn't get comfortable anywhere and knowing that this was my last VIDE chemotherapy I wanted to get out so badly. After this somewhat hellish hospital experience I was so happy to be home! All I had to do afterwards was to wait until my bloods reached normal levels and then I would be nearly ready to start high dose chemotherapy in February.

It felt fantastic to have finished my normal chemotherapy! I knew I had a lot to go through but I was proud to have come so far. I was so grateful to all my family and friends for supporting me so far. I'd made a lot of friends along the way too and was glad to have met so many amazing people. To paraphrase Churchill, I knew it wasn't the end. It wasn't even the beginning of the end. but it was perhaps, the end of the beginning.

Monday, 12 March 2012

Winter!





Christmas tree on Ward 78!
December 2010

I was now starting to become more and more ill as the effects of the chemotherapy built up. At this point most of my eyebrows and eyelashes had gone too and I was requiring blood transfusions every two weeks roughly. I was always tired at this point. 


For my fourth chemotherapy I had to travel to Leeds through horrendous weather. You know it's cold when ice starts to form on the inside of the car window! I helped set up the ward Christmas tree (see picture!) and the rest of the ward decorations! Because of the way my chemotherapy was timed I ended up having to travel home at 3am in the freezing weather. I badly needed the loo on the way home (having been on constant hydration for the previous four days) so we had to stop the car and pull over somewhere. It was 3:30am and -15 degrees celsius. Probably the coldest I've ever been!

Following my fourth chemotherapy at the beginning of December, I celebrated my 17th birthday on the 9th of December. I had a law trip with Sixth Form to go and watch some court cases in Hull, but afterwards myself and a few friends (Lauren, Ruth and Yas) all went for Pizza Hut, which was good although I was somewhat limited in my choice of food because I wasn't allowed to eat fresh salad or fish. 


I was booked in to have another load of scans before Christmas so that I knew just what was happening with my cancer. It was around this time that I was told that sadly my doctor, Professor Ian Lewis, would be leaving after 25 years at Leeds General Infirmary. My new consultant was to be another member of the Teenage Oncology team, Doctor Bob Phillips.



Dr Bob Phillips
Another one of the people who I owe my continued existence to.

I had my bloods checked on the morning of Christmas Eve and they came back in the evening. It looked like I would be spending a good few hours of Christmas Eve in hospital having a blood transfusion! They gave me a smaller amount of blood on Christmas Eve so I was able to go home for Christmas Day. It was times like this that I truly hated being ill more than anything. 

I spent my Christmas Day at home, having a full Christmas dinner and falling asleep at the dinner table because of how tired I was! I then slept for the whole afternoon and the evening! I was so unbelievably tired and I felt so ill. I went back to Hull Royal for another blood transfusion on Boxing Day and was stuck there for 6 hours. Because I was at risk of getting infections I was confined to a single room at the very top of the hospital, and as there isn't a Teenage Cancer Trust Ward there it was a very small room with no proper TV and the nurses weren't properly trained to deal with cancer patients. I did however, manage to get a photo during them six hours and I have to say the view (along with the various antics of the people of Hull!) kept me somewhat occupied!


It almost looks nice! 
December 2010.

I have to say it was a Christmas I would never forget. I was surrounded by my family but I worried that this would be the last Christmas I would have. Not just a slight worry, but an all consuming fear that this was it. That this was the last Christmas I would ever have. I think I appreciated just how lucky I was to be around for Christmas in 2011.