More Charity Work!

I've been rather busy recently getting things sorted for going to Australia in January (less than two months to go now!) so I've sadly not been blogging as much as I should. I've also been trying to become more involved in charity work at the moment. So far I've done a speech for Macmillan to help kickstart their World's Biggest Coffee Morning and I also went up to North Yorkshire to speak at a WW2-themed event, on behalf of a charity called Butterfly Giving, which is run by a friend of mine. Both events were great and I'm not sure how much the Macmillian event raised but I know that the WW2 event raised over £2500!

I can think of no reason not to have a helicopter.

I'd also like to do some form of charity work in Australia, even if this is just giving speeches or speaking to health professionals about the advantages of having an oncology ward specifically for teenagers and young people. If anyone happens to work at a hospital in Australia and is interested (unlikely I know) please don't hesitate to email me, or tweet me, or send me a message via carrier pigeon.

Organising my trip to Australia has given me the travelling bug, but it has also given me a fantastic idea for something to do to raise money and awareness for charity. I'm considering travelling from the UK to  Hong Kong and then back again but without using planes at all. However this seems a bit boring so I need some suggestions for challenges I can do along the way, to make it into something actually worthwhile rather than just a jolly, so this is where I'm asking for your suggestions! I'm not 100% what I'm going to do yet or which route I'm going to take but I'd love to hear your suggestions and I'd be grateful for any help anyone could give me, as I'm hoping to do this next summer.

Lost Friends

The day after my initial diagnosis I went to Hull Royal, for further scans to see where my cancer had spread to. All I knew at this point was that I had a type of bone tumour. The orthopaedic surgeon at Hull told me and my parents that my cancer had spread to my lungs. It felt like I'd been given a death sentence. My Dad passed out and my Mum burst into tears.

I'm just going to warn anyone about to read the rest of this that it's going to be pretty morbid and heavy. I'm going to write about death. There's a general consensus not to really talk about death as a cancer patient, it's a bit of an elephant in the room at times, but it's my blog and I'll talk about what I damn well please!

 No one really likes talking about it (I imagine because you inevitably end up thinking about your own), yet it's one of the only true guarantees in life. Every single person alive has a certain number of days, hours, minutes and seconds left. I imagine a lot of people would act differently if they knew how much time they had left, if everyone had a little ticker over their head saying how long they had. A lot less time would be wasted on meaningless rubbish!

I probably spend more time than I should thinking about my own mortality. One of my first questions for my consultant in Leeds was what are the chances that I survive. He never gave me an answer to it, saying that it was too individual to give me a fair estimate, but I tried to find out online and all I could find was that metastatic Ewing's Sarcoma has a 10% five year survival rate. Not exactly the reassuring news I was looking for! 5% is better than nothing though! I'm nearly two years clear of treatment now, so only three more to go until I'm in the magical 10%.

Having cancer means you will inevitably meet other cancer patients and sadly some of these will die. I've met countless people along my journey but there are ten or so who I know who've passed away and are important enough to me to think about every day. It doesn't get any easier when someone dies, no matter how many times it happens. When a person is gone they leave a hole which can't be filled be anything and the saddest thing for me is that too many people wait until someone has passed away to tell them how much they meant to them. Of the friends I've lost it's only a few who I have properly had the chance to say goodbye and there are a lot of things I regret not saying when I had the chance. I'd rather tell people while I have the chance, and do things that I've wanted to do rather than wait until I get some bad scans and do it then. Death isn't something to be scared of, it's going to happen to us all eventually, just nobody knows when. Whenever I try and get travel insurance they'll ask me if I'm terminal. I say no but in all honesty I don't know. Terminal means you're going to die, and the implication is that it will happen soon, but no one can honestly know when they're going to die. It could be tomorrow or in a hundred years.

I received a letter in the post from the orthopaedic surgeon, who had told me my cancer had spread to my lungs, yesterday. She said she was glad I was in good health at the moment and that she'd heard I was going to read History at King's College London in September. I don't think she'd expected me to make it this far when she told me my cancer had spread.

So does that mean you're okay now?

"So does that mean you're okay now?" I get asked this question a lot, and for anyone who isn't a doctor or who's had cancer themselves it can be really confusing, when a person has finished treatment for cancer, yet they're not 'cured'.

Cured isn't really the right word, because even though all the treatment is finished and the cancer is hopefully dead, there's still a chance that the cancer might still be alive somewhere, and if one cell gets past then the cancer will come back again. Annoying as this is there is nothing that can be done about it except for scanning every few months! Luckily I've found a handy cartoon which explains this a lot better than me!

Raising some more!

It's been a while since I last updated my blog so I thought with my AS exams finished and a few other things out the way now would be a good time to update everyone.

My last lot of scan results showed that my tumours had stayed the same and hadn't grown, meaning the cancer was stable. This hopefully means it is dead but they'll carry on scanning to check that it doesn't come back. It's also been nearly a year since I finished treatment now, so I'm one year closer to being given the all clear! One down and four more to go! 

My last effort to raise money for TCT with the Lost Boys Rally reached a grand total of £1200! It's fantastic that so many people donated and I'm grateful to all of you. This money goes to help so many young people across the country and I was honestly amazed at how generous everyone was! 

My next charity event is happening this Saturday in Newcastle. I'll be participating in a zip wire across the River Tyne. The zip wire travels roughly 280m across the river, from a height of 40m! I'm not scared of heights but I imagine I'll be questioning as to why I signed up to do it once I'm up there! 

If anyone wants to sponsor me I've set up a just giving page, the link is below.

http://www.justgiving.com/Nick-Massey3

I've also received a video of the speech I did at the Royal Albert Hall back in April. I hate watching myself back but I've been told to put in on here for anyone who wishes to watch it, although I can't bare to! 

I'll hopefully be going on Radio 2 at some point in the future, so I'll be sure to let people know when! Thank you in advance to who sponsors me, you're really making a difference! 

Week of Worry

Today was the last day of probably two of the most interesting two weeks of my life. I've spent about a week in London, met many amazing people, spoke on stage at the Royal Albert Hall, started raising money for my next charity event (£500 sponsored so far! More on this in a few days) and generally had an amazing time. If the rest of my life carried on like this I'd have one amazing life!

CT Scanner

Today I also went to Leeds for a CT scan of my lungs. The CT scan is my regular two month scan to check the tumours in my lungs to see if they've started growing again or not. The reason my lungs are scanned, rather than my main tumour on my pelvis is because if any new tumours start growing anywhere they'll most likely start growing in my lungs first. This is because cancer cells travel in the blood and because a lot of blood go through your lungs and it's a soft tissue then it is likely they will show their first.

The scan will show up if I have new tumours or not. If I do then I'll start chemotherapy again, but the chances are it wouldn't work as well again. The next week is going to be what I like to call one of my 'weeks of worry'. I'll receive the results at about 11:00am next Monday. Until then worrying about what might be on the scans will be on my mind constantly. From the moment I wake up until the second I go to sleep. It puts things into perspective somewhat. It certainly encourages me to make the most of this week!

I'll be sure to update you all when I get the scan results next Monday.

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!

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.

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.

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.

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.

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.

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. 

Family and Friends

I want to start off today by saying a huge thank you to everyone who's bothered to read and share so far. I'm very grateful to all of you. I'd also like to give a huge apology to everyone who I've made cry!

Cancer is one of them things which everyone says isn't going to happen to them. It's always something which is going to happen to someone else. This is particularly true at a young age and I have to say I find it awful that they don't teach anything about awareness of cancer in young people in schools. I think delays in diagnosis could be reduced if young people knew what symptoms to look out for. I didn't even know you could get bone cancer until I got told I had it! One of the main reasons I started this blog was to raise awareness of not only bone cancer, but of teenage cancers and how people can help by donating blood and highlighting the work of charities such as the Teenage Cancer Trust.

I'm going to be taking a bit of a sidetrack today by talking(or should that be typing?) about the impact that cancer can have on family and friends. Only one person actually has the cancer but the amount of people it affects is huge, and I personally think it upset my family and friends more than it upset me, particularly my parents and grandparents.

My parents both felt useless after I'd been diagnosed. They could support me all the way but they still had to watch me get ill. They saw the effect chemotherapy had on me and wished it could be them instead. My grandparents all thought it should've been them with cancer rather than me because of how young I was. All my relatives did their best to see me before I had lost my hair. It was hard to explain to my two cousins under ten why my hair had fallen out and why I looked so ill. We just told them that I was having some medicine which would make me ill before it made me better. Seeing all my family made me realise what I was fighting for and that everyone was there to support me. Family really are the best.

A load of my friends and me! (The bald one at the back)

I'm not sure where I'd be without the above lot of people, along with a load others who I simply can't get a picture of all together! There's been many times when they've not known what to say and I doubt anyone would in those situations. There's nothing to say when you tell someone that you might be dying. They've all been the most supportive friends I can imagine and although it's been hard for them to keep in contact with me when I've been away from Sixth Form for long periods they've all done their best. I've always tried to joke about my cancer because it stops it being something I fear, and although the jokes have at times been horrendously distasteful it's my cancer and I'll joke about it as much as I damn well please! I'm not afraid of it and I'll quite happily talk to anyone about it (if you have a question about anything to do with it feel free to ask!) However, I must admit I haven't always told them everything because I've been worried about upsetting them but I honestly don't think I would be here without you guys.

All in all, although only one person has the cancer it affects so many people around them. There were times when I was fine but my friends and family were not. When I was confident in getting better, but my friends would worry about me. Cancer is a horrible disease. Although it was the doctors that gave me the treatment, it was my family and friends that helped me through everything. You were all with me every step of the way.

 I love you all. 

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

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

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

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

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

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

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

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

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

Me

October 2010

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

Decisions, decisions...

Professor Ian Lewis, my Consultant

One of the men who saved my life.

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

                                     

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

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

Diagram showing portacath

(More on my portacath later though)

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

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

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

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

The next few steps...

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

September 2010.

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

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

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

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

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

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

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

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

Sarah Walker.

June 2011

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

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

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

September 2010.

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

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

Celebrations- The sweets to celebrate your cancer diagnosis with!

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

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

Hello there....

Well first off this is my first time blogging so I may blabber on a bit (or maybe not enough, I'm not really 100% on the amount of blabbering considered usual) and I apologise in advance for that! Firstly I'll introduce myself properly!

I thought the best way to do this would be a photo, they say a picture speaks a thousand words! Hopefully that'll go someway to explaining the mugshot above this! My name is Nick, and I'm 18, I live in East Yorkshire, just north of Hull! I'm currently at sixth form and I'm a massive politics, history and economics nerd! You'd be surprised at how much I love them three things! On a slightly less nerd note, I also play guitar and paint occasionally!
I suppose I should mention at this point why I've decided to start this blog and what makes me different to many other 18 year olds. When I was 16 I was diagnosed with a rare type of bone cancer called Ewing's Sarcoma. It was quite widespread but I finished treatment in July 2011, but I spent the whole of March last year in hospital, stuck in isolation. So, to celebrate the one year anniversary of this particular event I've decided to do a blog entry each day on a different aspect of having cancer as a young person! I hope it may be of interest to some people and give them an insight into what it is like to have a life threatening illness and maybe, just maybe, it might help someone who's going through the same thing as I was last year.

Thank you to anyone who has bothered to read this and I'll hopefully be starting tomorrow, most likely covering my initial diagnosis!