My journey with facial Cancer – the back ground story.

Firstly, let’s talk about my face before cancer.

It wasn’t any ol face, it was mine. When I looked in the mirror I saw me, not as young as I was, but that was as bad as it got.

One day that all changed.

SQUAMOUS CELL CARCINOMA IN THE ETHMOID SINUS.

Say that again? The what what in the what sinus…!?

It’s okay, I had no idea either!

So before I ramble on let me explain…

The Ethmoid Sinus is a small sinus located between the eye and the nose. Cancer of the Ethmoid Sinus is very rare, and with a wide variety of triggers it is hard to pin point the cause. The problem with sinus cancers is that by the time they are detected they are already quite advanced, and drastic measures need to be taken to effectively treat it.

It has been over a year now since my operation (written in 2013) and many people say I have a good story to tell. I hope it brings hope to you if you are dealing with cancer of any kind, but especially if it is facial.

My name is Daniel Jackson. I go back to November 2011, I was 33.

It started with a watery eye, a mild irritant…..

“You want to get that checked out,” said one of the girls I worked with. I just smiled. What’s the bother, it’s just a watery eye?

Time went on and the irritation became an inconvenience as the flow of tears became stronger from my right eye.

Eventually I went to the doctor and was prescribed eye drops, and was sent on my way. After 2 weeks there was no change, apart from now I had tissue paper almost glued to my hand, my eye was so sore and it was getting worse.

I went back to the doctor. This time I was sent off with different eye drops. This eye is beginning to bug me!

I had some good news just before Christmas, the New year would start with a new job. I had ambitions for my life, and this job sounded very exciting and just the challenge and future prospects I had looked for. So I quit my job current job with anticipation of a promising year.

In the new year I visited the doctor again, I was prescribed antibiotics this time, but also the doctor made a referral to the hospital so that the eye specialists could have a look, but I was to cancel if the antibiotics worked. The appointment came through for 2 months later, the eye wasn’t getting better, so I had to wait and put up with it.

The new job was going well I thought, although it turned out that the company wasn’t doing as well as they had hoped and I was “let go” in march. I was out of work, plus the appointment with the specialist was cancelled at short notice due to sickness. The next date was a month later. This is dragging on and my eye looks like I have been hit by a truck..

There was lots going on, I was so proud to give my mum away on her wedding day, shame about the shiner though!

The eye was now red and sore, maybe from the rubbing I thought.

I finally saw the first specialist at the hospital who told me it was a blocked tear duct, and sent me off with more antibiotic. This made perfect sense.

A follow up appointment was made for 2 weeks. In that time I was busy applying for work. The job which I had been let go from was a major blow, I had big plans for this year and so it was a set back. Times were tough with the recession and good jobs hard to come by, but there was a couple I applied for and I pinned my hopes on.

The 2 weeks passed and I went back to the hospital and saw a different specialist. His approach was much different. He looked with curiosity and was thorough.. “There is nothing wrong with your eye, I’m sending you for a scan, there’s something going on which I’m not sure about. stop taking the antibiotics, they’re useless for you”

This should have set the alarm bells going, but I was just happy that it seemed I was getting somewhere!

About 10 days or so later I went for a scan, I had only ever seen these things on tv before, I was actually quite excited!

The call

I had an interview! I was hunting for a new career, and I found one I liked the look of, I was very excited and confident, it was exactly the kind of job I was hoping for, however my eye looked like it had been punched.

On the morning of the interview, I was just killing time watching the the TV.

The phone rang. It was the consultants secretary “we have a space today at 2?” she said.

Impossible I thought “Sorry, it’s too short notice, I have an interview at the same time!” I said slightly alarmed.

“I advise you to take it!” she replied.

I felt really put out, bloody hospitals.. they cancel when they like, and just assume you can attend an appointment without notice! Well I do want this eye thing sorted, it’s been going on for about 6 months now….

I called my prospective employer and managed to rearrange the interview, only thing was that the only slot they could do was now! I had to be there in 20 minutes! I Shaved and got dressed in 10 minutes, no time to rehearse my preparation, I made the interview!

How did it go? I knew I did well, even with a black eye. “It’s in the bag” I thought. This year is going to be great afterall!

I then had an hours drive to the hospital. The endorphins were flowing I felt happy….

That’s no polyp!

What a morning! I was still buzzing from the weekend wedding and the interview which I knew against all the odds went really well. Nothing could go wrong now!

I waited patiently in the waiting room to see the consultant. My name was called, I walked into the room, the consultant was sat at his desk with his monitor facing away from me.

What he said next Was like a drop kick to the balls.

“There’s something growing inside your head. I’m not saying its anything serious at this point, but it looks like a tumour, it could be benign which means it isn’t too nasty, but I guess it could just be a polyp. We shouldn’t get too worried yet. We will need a biopsy”

He showed me the screen.

POLYP????? That was no fucking polyp I thought, It was huge!

This mass was somehow down into my right cheek, inside my nose, around my eye and back inside my head.

“Have you had nose bleeds or problems breathing out of that side of the nose?” he asked. The growth clearly showed it covered the top right of my nose, It should have been the smoking gun of symptoms.. but I had broken my nose as a kid and when it healed it blocked that side. I hadn’t been able to breathe out of that side for 30 years anyway!

My head was spinning. Cancer? I have cancer? No, you don’t know that, not yet at least.

I sat back in the car, contemplated calling home, I need tell her to her face. This isn’t going to go well.

I knocked on the door. We didn’t live together at this point. I nervously waited for the door to open.

“Sit down” she said “I’ve got some news, I’m so excited! We’re going to have a baby!”

Silence.

My mind burst, looking for a word to start what I needed to say “I have some news too…. don’t freak out Sue….. They’ve found a tumour…. but Its probably harmless.”

I don’t know what I expected, I had an hours drive back from the hospital to run through how this news would go, but nothing could prepare us for this.

The long and short of it was that I pretty much said I was going to die at the same moment we found out that we were going to be parents to our first child together. This should have been one of the happiest and most exciting moments of our lives together. It was everything but.

What can you do? What can you do? Nothing.

I didn’t know enough at this point to worry myself too much, and no matter what I was prepared to do what ever it took to get through this.

The next awful thing to do was also bitter sweet. This time telling my mum.

Mum had been away throughout this, she had been on honeymoon with Nick and we hadn’t told them so they could enjoy themselves without this news.

I don’t suppose there is ever a good time that you are either told you may have cancer, or to tell someone that you have.

Me and my sisters were waiting for them at home for them to walk through the door, their smiles were short lived.

Mum and Nick had barely put down their luggage “I’ve got some good news and some bad news!” Silence. The startled and confused expression on mums face is something I will never forget. Her eyes darting from one person to the next, searching for a clue.

All eyes were on me now, show time!

“I have a tumour, and sues pregnant!” There was a stunned silence. Her face contorted with emotions. Where do you start?

The biopsy and results

Things happened really quickly now, I was booked a week later for the biopsy, which would mean getting an answer to the question, is it cancer?

It was a miserable day, and an early start. They was to drill up my nose, through the cartilage which had formed after I broke my nose as a kid and into the tumour and take a sample.

I had only ever been put to sleep for an operation once before, and that was when I was about 12. I felt nervous.

I came around from the anaesthesia feeling quite accomplished. The first step had been taken.

If I am honest, the next day I experienced the worst pain ever. (And I can still say that after 6 years and all the operations that followed)

Not because of the biopsy, but the nurse pulling out the dressing out of my nose which was there to stop the bleeding. It had cemented itself in, and the only way to get it out was brute force. I know nurses are thick skinned, but she actually looked scared when she saw how much pain she caused me!

Click here to watch a short video of the pain…https://youtu.be/cV0U9DE7FSI

Please! This can’t be a taste of things to come!

We waited an agonising 10 days and the results were in. We were summoned to the hospital.

We were waiting nervously in the waiting room. Almost an hour of watching people go in and out, we were called in.

We had skirted around what we thought the results might be. Sue had convinced herself that it was harmless. I had said that I knew it was probably Cancer, I expected the worst.

I had heard and read that tumours like this could be removed by key-hole surgery, going up through the nose. I could manage that! (Even if I would have to go through the dressings being pulled out again!)

We walked in to a large room with probably 10 people in there, why so many? They were introduced individually but I really didn’t pay much attention, I only wanted to hear one thing, yes or no?

We sat down, the consultants face was emotionless.

“It is cancer.”

That was it, confirmation. My partner screamed and burst into tears. I held her hand “It’s ok I said”

It was explained that it was quite a large tumour, and it was of an aggressive nature. (Squamous cell carcinoma, a type of skin cancer that forms in moist areas, in my case the ethmoid sinus) In my case it was rated a stage 4a cancer. Nasty.

There was no reason for it, no particular cause. It can just happen. It was “localised” however it was against the cranial base, but had not penetrated… yet.

It had however grown around the back of the eye and into the Maxillary Sinus as well. It had blocked all the natural channels and glands which support the nose and eye which explained why the eye was watering.

“The eye will have to go”

WHAT???? SAY THAT AGAIN!!!!

This was not what I was expecting, I was prepared for everything but this. I had heard that this could happen, but my eye was fine, the eye surgeon told me!

“OK, compose yourself” I told myself, no eye is better than being dead… lots of people have a glass eye…

“We will take everything, including all the tissue around the eye .” You could hear a pin drop.

“Whatever it takes” I said, but the reality was that I was not taking in all the details…

What choice did I have? There was only one acceptable outcome, and that was to live.

The consultant said due to the closeness of the tumour to the eye, and the need to take a margin around the tumour which means the healthy eye would have to be forfeit.

You will have radiotherapy, chemotherapy and eventually fitted with an orbital prosthesis with combines a glass eye and eyebrow, eyelids…

Was there really nothing he could do? Please save the eye at least? He kindly promised he would make a call to a consultant in London’s Royal Marsden specialist cancer Hospital, who he knew to be the best in this field. He would ask for a second opinion from him. Maybe he could save the eye?

We left having been dealt some heavy blows but a distant hope of saving the eye. On the way home a call came from our consultant. Peter Clarke at The Royal Marsden would see me and treat me if I wanted him to. Would I like him to refer me? I didn’t need to think twice! Soon I was London bound with fresh hopes of saving my eye.

In the mean time I started searching the internet for my condition, chances of survival, pictures of glass eyes. “You won’t have a glass eye Dan?” She said.” They may have to take everything, eyelids as well!”

“Don’t be stupid, how am I supposed to have a glass eye then?” I protested. “They will make you a whole unit that plugs in!” I searched for that and the pictures weren’t pretty!

This one of the first pictures you find when searching Orbital Prosthesis:

The realisation dawned on me. This cancer can be managed but at the cost of my face. It is too much to think about… looking at this picture, how can you imagine living like that?

I hope this expert could help me more than anything!

I met with Peter Clarke and his team within a week. They looked at my scans, and considered the best treatment for me, there was nothing he could do, sadly the eye would go.

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