THE BLOG

What They Don't Tell You About Getting Cancer at 22 Years Old

02/02/2017 12:20 GMT | Updated 02/02/2017 12:20 GMT

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I was really, really bored, sat doing nothing in bed.

Clicking on the dating app Tinder on my phone I thought, 'ah this will be a laugh, let's check out the weirdos.'

I wasn't really interested in having a boyfriend, I just fancied a conversation.

There was a guy, David Boakes, who was the only one being nice to me. And he wanted to meet me for a drink.

I really wanted to... but how do you tell someone you're busy Monday through to Friday for the foreseeable future? How do you put him off without thinking he's being fobbed off?

In the end, I just came out with it. "I'm having chemotherapy".

He was like: "What? Have you got cancer?"

The only thing I could think to say back was: "Yeah, but don't worry, I haven't lost my hair!"

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When I first met David, who's still by my side, I didn't tell him about the feeding tube sticking out of my stomach, either. When he went to hug me I had to be careful that he didn't press against it.

You see, these are the things they don't tell you when they tell you you've got cancer aged 22 - the boredom, the frustration, the monotony, the embarrassment.

I hated moaning. I hated people feeling sorry for me.

I was more pissed off than scared.

And I also didn't anticipate the struggle I'd face, not just to get the Pencil Beam Proton Therapy treatment I wanted, but to convince doctors that there was something wrong with me in the first place.

I'd first noticed something strange back in November 2014 when the glands on my neck had swollen dramatically during a bout of cold.

I was at Plymouth University at the time, studying for a degree in Animal Behaviour and Welfare, so went to see my GP. 'It's fine', they said, 'It's swollen now but if you leave it for a bit it'll go down.'

But the lump on the right hand side didn't go down. If anything, it got larger.

I went back to my GP for a second, and then a third time, the worry growing in line with the lump, but it took until February of 2015 for me to be referred for an ultrasound and biopsy at Derriford Hospital, Plymouth.

'The scan looks fine', they told me, 'It just looks like an abscess in your gland from being full of cold and flu'. The results of the biopsy, meanwhile, came back 'inconclusive'.

Because I was young, fit and showing no other symptoms, they assumed all was well.

I went home with a course of antibiotics...but I wasn't convinced. The swelling on my neck was pretty obvious. And it wasn't going away.

My mum, Jeanette, begged me to go back to the hospital and so I did...only to return home with yet another course of antibiotics.

But by March 2015, I was beyond worried. I was Googling my symptoms and panicking.

Time and again, I was told that the longer I did nothing, the better it would be because my body would fight it naturally.

In hindsight, it was the worst advice I could have been given.

It's really weird, but I instinctively knew I was in trouble. I remember being in the sitting room of my student house with my best friend, Beth, and I blurted-out, 'I feel something bad is about to happen to me. I don't know what it is...but I feel like I'm going to be that friend who's going to die'. It was like my body was whispering to my subconscious and telling it to prepare for the worst.

I rang my mum, breaking down in floods of tears, telling her, 'I think it's cancer.' And she urged me to go back to the doctors and get a second ultrasound.

I visited my GP once more, even showed up at A&E, but was repeatedly told everything was okay.

Up until this point, I hadn't even used the private health insurance I had. I'd felt confident enough in the NHS not to bother activating it. But now I felt like I had no other choice.

In April 2015, I went back home to Biggleswade, Bedfordshire, went to see my concerned local GP, and was immediately referred to the private Pinehill Hospital in Hitchin where I I finally got my second ultrasound and second biopsy.

'It's a branchial cyst', it revealed, 'Nothing to worry about. Let's have it removed through surgery and see if there's anything nasty in it'.

Finally, I was getting answers.

On 29th April 2015, I had the operation to remove the cyst. It was a big mass to remove, next to all my nerves. But I felt absolutely fine, I didn't even have any pain. I was relieved. This thing was out, it's done, it's gone, I can carry on with life. I went back to uni, with everyone poking fun at the huge scar running down my neck. Life for me went back to normal.

I heard nothing from the hospital for two weeks and assumed no news was good news.

Then, one morning, I woke up at around 10am and looked at my phone. There were a lot of missed calls from a number with a Hertfordshire dialling code.

It was the hospital in Hitchin. And they were telling me that I needed to come back and see them...today.

I'm not an idiot. They couldn't tell me over the phone, but I knew. I called my dad and said, 'They've obviously found cancer'.

I went upstairs to pack and collapsed in tears. It's the most upset I've ever been, but I didn't really cry again after that point.

The five hour train journey home was torture. Did I have brain cancer? Was I going to die in a matter of days?

I'm a blunt person. I even told my friends, 'That's it, I'm going to die'. I was so scared, but almost laughing at how sad I was feeling.

The appointment at the hospital was intense. With my mum and dad, Chris, sitting beside me, everyone expecting me to break down. But the initial shock was already over. I just wanted them to get to the point.

My Ear Nose and Throat specialist started to speak, saying, 'We've found'... and I interrupted, 'Cancer cells? Well, yeah, I know that. No-one makes you travel half way across the country if you hadn't.'

The cancer had been detected in the swollen lymph node in my neck, which meant the actual tumour could have been anywhere. And at this stage they had no idea where it was.

I had an MRI scan within a few days and then they told me I had Stage 3 'Nasopharyngeal cancer', a rare type of head and neck cancer in the upper part of my throat, behind my nose.

I couldn't feel it, but it was there, and roughly 3cm in diameter.

And because of where it was, they couldn't get to it. It was inoperable.

But, and this sounds crazy, I actually felt okay. I was thinking, 'Right, we know what it is, let's got on with it, give me the treatment, I don't care how painful it is, bosh, I'm done, I want to go back to how I was before.' All I kept asking was, 'How long is this going to take? I want to carry on with my life.'

There was no point moaning about it, was there? It was all just so annoying. I was two exams away from finishing uni and I'd just spent ages growing my hair!

My private oncologist at a hospital in Bishop's Stortford told me everything that was going to happen next. I needed chemotherapy and intensity-modulated radiation therapy (IMRT). I didn't know what it all meant, but I knew it wasn't good.

And when he told me about the radiotherapy, listing the side effects, and how awful a time I'd have, I was horrified. With standard radiotherapy - high energy rays blasted at a tumour to kill cancer cells - I risked brain damage, losing my hearing, getting thyroid disease, going blind, and increasing my chances of getting another cancer in the future by 50 per cent.

I thought, 'This is a joke. I'm not doing that. Is there nothing else?' But I was told, 'This is it. This is what you're having'.

They may as well have added, 'How dare you even ask?'

In June 2015 I was told by my private oncologist that if I sought out an 'alternative' for the radiotherapy they'd refuse to treat me at all. They said it'd be 'too complicated'.

That's pretty much when I decided that I wasn't going to let them dictate to me any more. We went away as a family, in secret, and started looking at the alternatives.

And what we found was pencil beam proton therapy.

I'd heard of it before because of the Ashya King case, and what I learned is that unlike conventional radiotherapy, it uses a positively charged particles to attack cancer cells with pencil-point precision, preserving healthy tissue in front of the tumour and preventing damage to the tissue behind it. It wouldn't go through my brain, wouldn't touch my eyes and I wouldn't need a feeding tube.

It looked, quite literally, like a no-brainer.

There were just a couple of hitches.

Number one - it's expensive. I had to find £57,000 because the NHS won't fund it for everyone.

Number two, I had to go to the Proton Therapy Center in Prague, Czech Republic, as there's only a few specialist places in the world who do it.

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(Sam and friend Beth in Prague, March 2016)

I decided to launch a crowdfunding page to help pay towards my proton therapy treatment. I didn't like it at all. I didn't even want to tell people I had cancer. It felt embarrassing, like I was begging. But I felt I had no other option and wanted to help my family gather the money as much as I could.

This would have been a huge struggle if it wasn't for the amazing generosity of the public and in particular a close family friend of mine, Josh, who came to my rescue immediately, giving me a large amount which, with the money raised, meant I was able to afford this treatment.

Then, at the start of August, I left the UK having had two weeks of chemotherapy and got on a plane to Prague, knowing I had seven-and-a-half weeks of proton beam therapy - 38 'fractions' - and more chemotherapy in front of me.

And I felt so good.

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(Sam and mum Jeanette in a Prague taxi)

The crowdfunding had worked, the money was in place, I was going to be well looked after and I was looking forward to it being done with. I felt like, 'Bring it on!'

Over the next few weeks, I watched as the tumour slowly shrank and died. It had reduced by 50 per cent after just two weeks.

And my boyfriend David got me through the dark times, spending hours on FaceTime with me every single day.

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(Sam and David at Proton Therapy Center)

I got mouth sores and a scratchy throat and I felt a bit rubbish, but other than that the side effects were minimal. Nothing was unbearable. I didn't even use painkillers until five weeks in.

And then my tumour disappeared completely after seven and a half weeks. Gone. I remember them saying, 'There's no sign of it'. I'd responded amazingly well to the treatment.

Yet, while my mum was sobbing with relief, there was no cause for celebration for me. Any sense of relief didn't hit me until a few months afterwards.

I went home late September, got a part time job as a dog walker in October, and slowly relearned how to be normal again.

Do I feel like I'm back to what I was before all of this happened? Not yet. I won't be discharged fully for another four years and have to have regular scans.

My cancer has made me a more anxious person, compared to the incredibly confident young woman I was before. Nothing ever worried me. Now I get upset easier.

I've had a big reality check.

But I'm working, I'm living my life, and as you read this I'll be fulfilling a lifelong dream by travelling around Asia for three months with my best friend. This is what I should have been doing when I left university. This is why I've been so frustrated.

Now, as well as living my life, I want to share my story to make other people in my position aware of pencil beam proton therapy. Some in the NHS are excited by it, others are dismissive and negative.

And that's not fair.

As it stands, there's only one NHS proton therapy centre in the UK - at the Clatterbridge Hospital in Cheshire - and it only treats eye tumours. Anyone else, if they're lucky, has to be treated abroad.

There are other centres currently being built and due to open in 2018. But there are fears that by the time the technology is up and ready it may already be outdated.

More money needs to be invested in proton therapy and it needs to be available to way more many cancers than it currently is.

And please, doctors, GPs, oncologists, radiographers, and A&E workers - stop turning away young people just because they look fit and healthy.

Otherwise more people like me will fall through the cracks.

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(Sam and David on holiday in Kos, Sept 2016)