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.

An unorthodox 18th

My 18th Birthday was on the 9th of December 2011, and I had a party with all my friends and went out for a meal. It was a fantastic birthday by all accounts because I ended it drunk as a skunk!

It wasn't until the next day that I found out that one of my friends, Ali, had passed away the day before. Ali Turner was 19 when he died. He had been diagnosed with a brain tumour in 2010 and after months of chemotherapy, radiotherapy and brain surgery, he was told that his tumour had gone and that he was in remission. It returned in early 2011 and he started chemotherapy and radiotherapy again. He was told that the chemotherapy had stopped working and there was nothing they could do for him in August 2011.

Ali was always an inspiration to me and someone to look up to. His type of cancer was also very rare and it made me realise that even when things looked bleak you could still fight on and make the best of things. Ali's parents and his sister were on the ward a lot and were the loveliest people you could imagine. I couldn't and still can't understand why bad things happen to the nicest people. Life truly is unfair sometimes. 

Ali's funeral was held on Thursday the 15th of December. Afterwards we went back to the golf club he played at it made me realise how many people just one person can affect. It was heart-wrenching to hear his friends speak about him, but also amazing because it made me realise what a great person he had been.   I think about him every single day without fail and I'll never forget him. 

Ali, his parents and his sister

RIP Ali Turner.

I had my scans in late January, following all my exams and they didn't show any new growth, luckily. This was the last proper scan that I had and so far I don't have any unusual pains or coughs, so hopefully nothing has started growing again. I have scans every few months to look for any sign of new cancer growth. I will have this for the next 5 years, at which point I will be a survivor. At the moment, I'm still classed as having cancer and although I sincerely hope it doesn't start growing there remains a risk that it may. I worry about what would happen if it does because it would most likely mean I would only have a while left. This thought is with me every day, every hour and every minute. Whenever I have scans coming up I worry so much about what could potentially happen.

I guess the only answer is to live each day as if it's your last. Take every opportunity given to me and try not to worry. We are all dying and it is the inevitable end to each and every single one of us. Don't waste a day because you'll never get it back. 

Live your life, it's the only one you get.

Scans Scans Scans....

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

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

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

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

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

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

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.

First Scans...

I had always thought something unusual would happen to me. That maybe one day an event in my life would happen, almost like something straight out of a film. I was more hoping for winning the lottery or becoming famous than getting a life threatening disease though if I'm honest!

Sarah came to visit me in the October half term which helped me a lot, although it upset her to see me so ill and unable to eat. But she struggled through and helped me as best she could. I doubt I could ever repay her for it if I'm honest. Thank you Sarah!

Sarah and I.

October 2010

I was also told at this point that because of where my tumours were it was unlikely that surgery would be an option and that I would most likely be having radiotherapy. I was also told that if I had the radiotherapy to my head, my hair would never grow back. I suppose I'd have to get used to being bald.

I had another round of tests on my kidneys and heart to check that they were still in working order, which they were. I was told that following my third session of chemotherapy I would have to have my stem cells harvested so that they could be used in a stem cell transplant (more on this later). I would have an injection everyday for a week and then I would go to Leeds to have my stem cells harvested. I'll cover more on this tomorrow though!

Never ever.

At the end of October I had scans and at the beginning of November I got the results. These would show whether the chemotherapy was working or not. If not there wouldn't be much they could do for me, only extend my life for a while. Predictably I was nervous as hell. Sometimes I would get myself so worked up worrying and then within an hour I would be convinced I would be fine. This went on for weeks and weeks and if I'm honest still occasionally worries me. It's a very unusual place to be in, as not many other people have experienced it, meaning it's hard to explain to many people. I was so uncertain and scared of what would happen. I think for the first time in my life I realised that you don't live forever. You're alive for a certain number of days and there's nothing you can do to change that, you've just got to make the most of the time you have.

I was in hospital when I received the scan results. The MRI of my pelvis showed new tumours had appeared on the left side of my pelvis. Fortunately my main tumour on the right side had shrunk slightly. This meant that the chemotherapy had had an effect on my tumours! The new tumours on the left hand side of my pelvis came as a shock though. My cancer was even more widespread than I had thought, and I was worried that it might carry on spreading even while the chemotherapy was attempting to work. Luckily the chemotherapy had shrunk my main tumour though, if only slightly. There was hope! 

I was scared of dying still, and I still am scared in case my tumours start growing again at the moment. I realised that scans aren't black and white, there's always a grey area. An area that could be a tumour or may just be a blood vessel or infection. I'd also realised that nothing ever turns out the way you planned. I thought that I would be okay on chemotherapy but I was so tired all the time and after over a month of being tired and ill it was starting to take its toll on me. My eyelashes and eyebrows were starting to fall out too and although my skin was better, it was still badly scarred. If it wasn't for my friends and family I wouldn't have been able to get this far. But the chemotherapy had begun its job. There was a reason to carry on fighting.

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.