It’s just a blocked ear – not!

Nasopharyngeal cancer are two words I find very difficult to say – but back in 2013 I had to come to terms with them very quickly.

My diagnosis came about after a quiet pint with a good friend in April of that year. The doctor said I had an inner ear infection, but my friend knew someone who had had similar symptoms and had been diagnosed with cancer.

“Get back to your doctor on Monday and don’t leave until you’re properly seen to,” he said.

The doctor managed to get me an appointment with a specialist Ear, Nose and Throat doctor in Kirkcaldy. After much poking and prodding down my nose with a camera, I was aware something was wrong.

My head was spinning. I knew I had something bad but I was soon to meet some of the best people in the world to make me good again.

“Good morning Colin,” said my new best friend Dr Ironside. “Good morning,” I replied. They were the last words I said before being officially told the news.

I had nasopharyngeal cancer – a type of head and neck cancer – not common but very treatable.

You know in the movies when you see all the walls closing in? Well it doesn’t just happen in the movies, it happens in real life.

It was then my other new best friend Julie Philps – a Macmillan Head & Neck nurse at Queen Margaret Hospital, stepped forward.

She wanted to stick a camera down my nose again but I couldn’t face it – I had just had the life sucked out of me and was watching my soul mate Sharon being told I had cancer.

“OK, let’s skip the camera today but we’ll need to take blood,” said Julie.

Great, out of the frying pan and into the fire – did I mention I hate needles?

After having my blood pressure, heart rate and temperature checked, I had a class A meltdown when it came to giving a blood sample. Why me, why us, why?

My life had changed forever, but by just how much I had no idea at the time.

“So Julie, what’s the story?” I asked.

“Well, it’s going to be rough Colin,” she replied. “We are going to go in hard and fast. Chemo, chemo, radio, chemo, chemo. You’re going to lose a bit of weight and all of your teeth but we are going to beat it.

“You will also have to go in for CT, MRI and PET scans and we will have to keep taking blood. Oh and while I remember, you will need a feeding tube fitted before you start your radio.”

OK, it was time to make a choice. If I was going to get through this, I didn’t need to know too much because if I did, I wouldn’t get past day one.

So off I went into the unknown – first a CT scan, then an MRI scan, followed by a PET scan. I found the scanning process quite relaxing and, as it turns out, good practice for radiotherapy. OK, there were still needles involved, but hey, the needles were never going to go away.

Two weeks before my first chemo, a letter dropped through the door from Queen Margaret Hospital – it was time to have my teeth out. The journey was starting and the sooner we got started the sooner we’d get finished.

And how hard could this be – my teeth weren’t in the best of shape anyway. I was about to get a very rude awakening that would test me to the full.

Three hours after the operation, I woke up. It felt like someone had stuck a hot poker in my mouth.

AHHHHHHHHHHHHHHH! I couldn’t scream – it was too sore. I couldn’t open my mouth – it was too sore. I couldn’t do anything – it was too sore.

Pain killers administered, I was on my way home. Done – 20 or so teeth out in a day. Apart from feeling like someone had run a digger across my mouth, I had made it.

Looking back, it has to be the worst part of the whole journey and going forward it still remains the most difficult thing to come to terms with.

But it was time to move onto the next stage of the journey. Bring on the chemo.

I was introduced to the team at the Western General Hospital in Edinburgh – the most fantastic bunch of nurses you could ever meet. A smile for everyone and a helping hand for anyone who needs it 24/7.

Chemo – what is it? What does it do? What are the side effects? I didn’t want to know – only tell me where and when, and I would turn up.

I was taken through to my ward, my chemo arrived and I got hooked up to my pump. It would be with me for five days as I ate, slept, showered and shaved. I settled into the routine quickly: up early, shower, brekkie, pills, lunch, sleep, pills, supper, visits, and then bed for the night. Life was good – well as good as it could get.

Then I was told I would need to have a daily jab to prevent Deep Vein Thrombosis (because I was spending most of the day in bed) – and the jab had to be in my stomach. This brought another mini meltdown and a compromise was reached allowing me to have the first injection in my arm.

During a trip to get a scan done on the other side of the hospital, I discovered a coffee shop and a newspaper shop. A plan to avoid further injections started to form.

The next morning I told the team I was going for a wander down the corridor. I retraced my steps from the previous day to buy a newspaper and a large latte. I meandered back to the ward like the cat that got the cream.

“Colin, where have you been?” boomed a stern voice. It turned out that one of the biggest no no’s is leaving the ward unaccompanied when you’re hooked up to chemo.

I needed to get both my daily walk (to avoid the jab) and my coffee so an uneasy truce was brokered. I would disappear to a quiet room each morning to watch TV, but on the way would ghost away to the coffee shop. Job done – no needles, nice coffee and no chemo spills. And exploring the hospital kept me from going insane.

The second hurdle was convincing my team that my drastic weight loss was under control. I had my feeding pipe fitted and kept it clean but didn’t ever use it. I hated it and convinced myself I was going to sail through chemo and my appetite was not going to be that badly affected. Wrong, wrong, wrong.

Chemo creeps up on you. You feel great to begin with but as the weeks wear on it brings a slow and constant descent.

I got to week five before it hit me and for the last two weeks of my treatment, I was living on soup and sports drinks.  Even they tasted weird but it was all I could manage. It got to the stage where anything I was taking on board was just coming back up hours later – my throat was so dry and my saliva was like wallpaper paste.

My treatment finished and things were getting grim – it even got to the stage where I blacked out a couple of times. Then one day I went fishing with my friend and on the way got a wee bottle of Irn-Bru. I have never been a fan of it but for some reason, that’s what I wanted. Somehow it seemed to do something and from that day onwards, I was on the mend. Every day I got a tiny bit stronger and felt a wee bit better. I had turned a huge corner and things were on the up.

Another letter dropped through the door – it was my radiotherapy plan setting out in great detail where I had to be for the whole of August and September. At the top of the page it said mask fitting – mask fitting? It turned out I needed a mask made that would make sure the treatment got directed to the right place.

So it was off to the mask fitting department – and I’m just glad I’m not claustrophobic. Firstly a warm plastic perforated sheet was moulded over my face and then I had to lie still for 15 minutes while it cooled. To begin with I quite enjoyed the weird feeling of the warm plastic all around my face, neck and shoulders. Then as the plastic started contracting, I felt a moment of absolute terror. Just as quickly the sensation passed and I had a super cool Hans Solo mask.

Radiotherapy – what is it? Again I never asked. I just turned up at the hospital for seven weeks at 9.30am ready to go.

As the weeks passed, the treatment began to take its toll. My neck began to give in and the skin was beginning to chaff. I was getting greyer and greyer but the days were ticking by.

I was a mess but finally it was over and it was time to start to recover. Fast forward to my next appointment at the Western General to find out if the nine months of treatment had been worth it.

“Well Colin, your scan has come back 100% clear.”

BOOM. There it was, back of the net, Archie Gemmill, Johnny Watson, Shearer, BOOM.

I was floating, skimming over the floor. It dawned on me how my journey was about to finish exactly where it started. I said my goodbyes and walked out the door I had first walked in nine months before, and just broke down in tears.

It was time to get back to leading a normal life as far away from needles and scanning machines as possible – never forgetting all the people I had met along the way.

Postscript

So, three years on how am I doing? I still get up every morning and check no lumps have reappeared on my neck. I still go and grab a good coffee every morning no matter where I am and who says I can’t. I still pop in for a check-up from time to time and have not, and will never, get used to needles but I think everyone just puts up with it and we get on.

Not a day goes by without me at some point thinking about IT. I keep looking over my shoulder never quite sure. The horizon just keeps stretching out there further and further and while it keeps doing that I will keep on stepping out into it.

I am a very lucky man in no small part to every single person who happened to be involved in my journey. I’m well and plan to stay well for a long time. And along the way I hope my story can help others in any small way.

Colin Paterson

 

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