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.

Scan Results

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

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

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

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

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

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

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.

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.

Symptoms and Diagnosis

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

London, August 2010.

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

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

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

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

 

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

July 2010.

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

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

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

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

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

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!