My journey with Ethmoid Cancer – the surgery and treatment.

Me and Sue

The unavoidable reality of impending doom took the place of hope. This was base level, it couldn’t get any worse.

We was desperate for a slice of good news… and there wasn’t much to be found.

What had been reassuring was that Peter (my consultant) was confident he could get it all, and suggested a high probability of total success. We took that to mean that this would be a one time operation and I would be back on my feet before we knew it. Including the radiotherapy and chemotherapy it seemed like I would be out of action for a few months, but then able to get in with my life.

This was only a life hiccup!

It was now June 11th which seemed a long time since early April when I first got the news. It was obviously still early in Sue’s pregnancy and this was now the day that was the start of a new chapter in our lives.

Show time.

June 11th 2012 was the day of my operation. Sue was with me, the rest of my family would travel to see me after the operation. We sat nervously in the Hospital ward, one eye on the clock, the other on the tv. My name was called, we looked at each other, the realisation that this was THE moment.

“Come on, let’s go..” I said.

Sue was allowed to come with me as far as the doors to the operating theatres , and we hugged. It felt like it was a goodbye. I felt numb.

It is a really strange feeling to not only know you are about to undergo major surgery, but this was no ordinary operation, it was to have cancer removed, with no guarantee of success.

There was a picture on the wall, I looked at my reflection, this was the last time I would see myself with my own two eyes.

Sue was so brave, she told me now as soon as I was gone, she fell to the floor sobbing. She had held it together for me up til that point. She now had a long wait on her own.

5 hours passed and I was out of surgery and in recovery

I find it such a strange sensation being anesthetized. Laying there on the bed with a cocktail of drugs being pumped into your body… then the good stuff! A sudden rush, then nothing. Waking up is just the reverse I suppose. Like a fog lifting it was as if time hadn’t passed a second. A nurse was with me, I felt drunk… I think I came out with something witty to make her laugh, but probably just slurred nonsense!

Sue was there waiting for me in the ward. We smiled at each other, the rest of my family were just turning up too. I didn’t know what to expect, how far had the surgery gone? Had it been a success? Had everything gone as well as expected?

I tried to open my eyes, only the left one opened. I closed it, total darkness.

I felt my head, it was bandaged up. I could talk… that was a relief! It meant that the operation didn’t involve cutting my mouth. I was on a roll!

I needed the toilet, and was still heavily under the effects of anaesthetic, but I thought what the heck, I got out of bed and wobbled down the corridor. The nurse found an empty bed, and was not happy at all when I got back.

After Op

What they did

The Consultant Surgeon Peter Clarke came by and said it had gone well. They had made a cut down the crease of the nose from the bottom up to the eye and removed the eye. From there they were able to flap open the face and remove the tumour under my cheek, from the orbit and the nasal cavity. It was neatly finished off by sewing back the nose cut and the eye lids were sewn closed. The idea being that the eye lids would now form the back of the eye socket.

(I have since heard of many people that have a similar operation with the addition of a transplanted piece of skin from another part of their body at the same time as the removal of the tumour) In my case my surgeon believed he could get the satisfactory result without the need of further surgery and so we opted for the best aesthetic result)

I was told that the dressing would have to stay on for a week then it would be changed when they removed the stitches. That night I had a broken nights sleep, the nurses would wake me for medication etc.

The next day I went home.

Me after op

The bandages had come loose in the night, and so I had to have a look! It was as if that part of my face had been airbrushed out, very strange!

There were some unexpected side effects, I didn’t have any feeling from my top lip , basically a 3 inch wide strip running upwards in a straight line running through my eye, forehead and to the back of my head. I was told this was due to the nerve being cut, and that I may regain feeling over time.

Pain relief

I can’t say it didn’t hurt, but the pain was not as bad as I expected, but I took the pills religiously.

I soon realised the strong pain killers were of no use, due to the nerve being cut and numbness I couldn’t feel anything anyway! Tramadol were the painkillers I mainly used. They are nasty things, terrible night sweats. I know not everyone has the same reaction, but every inch of my body was screaming to be itched. As much as I couldn’t stand the itching I was developing some kind of addiction to them. I was double dosing. They had to go!

For the next week it was simply recovery. I had left the hospital the day after the operation, all I had to do was stay in bed.

A week later I went back to have the stitches out. The corner area was not healing. It was seeping, I asked if it needed to be stitched again.

The surgeon said it may form a hole! The tissues were too strained to take a stitch, but not to worry at this point. In 5 weeks time my 6 week course of Radiotherapy would start, including 2 cycles of chemotherapy. Nothing could be done until that had finished.

The only other things to note was that I lost all sense of smell, and most of my taste. A year on and my taste I think has returned, or maybe I’ve just adjusted? But still no smell, which can have its perks! Finally the ongoing need to flush out the nose is a drain.

A Douche bottle? er where what do I do with that?

Right at the beginning the consultant gave me a douche bottle as he said it would help with the crusting which now formed in the nose and the new cavity behind the nose.

All the natural drains and links between the sinuses were now gone, destroyed, removed, non existent. What you can’t see at this point is the huge hole behind my nose and eye from where the cancer was removed.

The body’s natural healing fluids where pouring from my nose, but not only that, the sinus gland secretions which now had nowhere to go. It is an oil like fluid which would set to a crust, blocking the airway, sliding down in lumps down the back of my throat.

The douche bottle became an essential daily routine, up to 5 times a day. I would not leave the house without douching first.

This by far has been the most annoying, inconvenient, embarrassing, gross but satisfying side effect, which I think I will have to deal with for the rest of my life.

It’s a daily task, even 6 years later I douche once a day.

Once you get used to squeezing water up your nose (a skill in itself) without drowning yourself, it’s a doddle and as I said satisfying, when you see the gunk come out and being able to breathe properly again!

Was it healing well?

No. Sadly I noticed that this hole in the corner of my face got bigger, much bigger! It started with a pin head sized hole, where liquid would seep from it. Bit by bit it got bigger.

After a year it completely fell away exposing my complete eye orbit and behind the nose and throat. I could poke my finger up my nose and touch it with a finger in my eye socket, you could see down the back of my throat and see the tongue moving.

But, when it came to douching the crusting it gave an another way to flush the nose out! I would pump the douche bottle up my nostril and the fluid and funk would fly out of my orbit! I know, a horrible idea, but sadly true in my case.

Added content in 2017

Would you Doucheit for facial cancer?

I just wanted to add this in at this point. The years that followed my surgery were very busy. I became heavily involved in charity work, and it got me thinking, what can I do to raise awareness for people that suffer facial cancer.. and I came up with Doucheit!

It is a unique challenge similar to the hugely popular ice bucket challenge…. would you Doucheit for facial cancer?

Please click the links to find out more and watch my YouTube video… and share!

Life with an eye patch

One of the trade offs of having one eye is that you can be a pirate.

I need an eye patch!

We bought some eye patches from the local chemist. Really disappointing. There were only 2 choices, a hard plastic one, and one the size of a frisbee! The most annoying was that you never really knew if it was in the right position. The elastic was rubbish, irritating and pulled my hair. No matter where I looked I never really found anything that looked like it would be any good, so I put up with it.

Realising there is a need for great eye patches I set myself a project to make my own, and make it a business.

I did release my own eye patches, I sold a few but I couldn’t sew, and I had to rely on others to help, but realistically it was a project I couldn’t sustain at that time.

One day I hope to have another go as there is a huge demand, and if it wasn’t for my personal stock I would be forced to but the terrible ones from the chemist.

For any news on eyepatches for the future, or charitable new, please like my Facebook page
See www.facebook.com/cancernow

Adjusting to monocular vision..

At first my coordination was shot to bits. I was grabbing air when reaching for a glass, let alone catching a ball, or indeed kicking it, but as time went on I adjusted and grew in confidence.

I went out on my bicycle one day, maybe 2 weeks after the operation. It was a lovely day so I rode down by some farmers fields and the tractor was ploughing its fields. The dust cloud went across my path and I squinted my eye…. BLIND!! For a brief second anything could have happened. I didn’t crash but it was a wake up call.
I now have limitations.

Life continues..

The week following the operation I was london bound to have the stitches out and to meet Sarah who would be the person that would make my new face… a prosthetic.

We took the 211 bus from the Marsden to Charing Cross hospital. My phone rang.

It was the lady that Interviewed me the day I found out I had a tumour. She wanted to offer me a job! I hadn’t heard from them all this time, and now for the first time in my life I had to decline a job offer.

I explained what had happened and what was going to happen next. Hopefully in a couple of months when all of this was over I said. (How wrong was I!)

I finished my call and a lady approached me, put her hand on my shoulder.

“Thank you.” She said

“Thank you? What for?” I replied.

She explained that she had bad things going on in her life, she had listened to my call, and it put her problems into context,

“Life is too short and precious” she said.

I never saw her again. But it really touched me. It was probably the catalyst that encouraged me to eventually write out my journey with cancer.

How typical of life? The ripples that touch far and wide both good and bad. It feels good to know that you can help people without knowing it.

6 weeks later I moved onto the next phase of treatment…

Radiotherapy and chemotherapy

Sue is now well-developed in pregnancy.

We made the tough choice for me to stay in London the weekdays I was having radiotherapy treatment.

I lived at least 3 hours travel each way if I travelled from home. My sisters lived in London, I was told to expect extreme tiredness and fatigue. So I shared my time between them. Nether the less, navigating London is never quick or easy!

I had a mask made for me which would be used to hold my head in position so that the radiotherapy could be focused on the same spot each time.

What was it like? Radiotherapy was a doddle. For the first few weeks I had no obvious Side effects.

I had 30 sessions. It didn’t hurt, The only real pain was inconvenience.

It felt claustrophobic at first when the face mask was clamped down.

I was told I did well, so it’s not the same for everyone. I put weight on!

I had 2 cycles of Chemotherapy, the first session was easy. I was only left inconvenienced by the noise of the drip machine. First cycle of chemotherapy was 2 weeks in, the last was 4 weeks in. That hit me like a sledge-hammer. It doesn’t hurt when it goes in, and radiotherapy is just the same as a light switch being switched on/off, although you don’t see the light, It’s the weeks after. Your body is drained. I truly pitty those that endure multiple chemotherapy cycles and radiotherapy.

Radiotherapy doesn’t end with the final cycle, that’s where it gets nasty. It wasn’t until after the radiotherapy had ended the effects really took hold. I had put on weight. A lot. I went up-to 117kg which is big, even for me. I’m a shade under 6’5. The next few months took their toll. I also had a neat bald patch, bald as a baby’s bum rectangular shape on the back of my head where the radiotherapy ballistic missile had passed through my head and killed the hair follicles. Also the burn became more visible on my face and forehead. I had to regularly apply Aqueous cream to keep the skin moisturised.

I don’t know how much it cooked my brain. But in the end I slept. I slept all the time. I woke in the morning to go straight back to bed. I was wiped out.

Sue was still working and about 6 months pregnant. She would come home and I was still in bed. I tried to help as much as I could but I would cook dinner and crash again.

How long would this last?

I will say it took a good 6 months to feel almost normal. But slowly like a fog lifting I started to feel better.

After being zapped

The hole got bigger. The process seemed to be that the skin would dry at the edges, then scab and fall away, and the hole would get bigger, and so on. There was no real advice as to how far it would go. I never expected how big the hole would get, but radiotherapy is very aggressive and not to be underestimated.

The next step was to prepare me for the titanium implants. I had lost 20 kilos in 2 months after radiotherapy.

Radiotherapy is as someone said later, “is a shit way to lose weight!”

I needed to lose the weight, but I felt like an old man, I had lost muscle mass, I just had no strength.

This is now November. Sue is heavily pregnant and although 2 weeks off of her due date, we were worried the arrival of baby was imminent, and so almost cancelled the operation to put the implants in, but we pushed ahead. I can’t waste anymore time!

It was a simple operation, screw in some bolts to hold a prosthetic. At the same time bolt in an anchor to hold my eye brow up, as it had been pulled down by the fact my eyelids were sewn together. It’s always weird looking in the mirror and seeing the 3 studs poking out of my face! It’s weird to touch them, as they are screwed into the skull, they form a solid part of me, but to touch there is no feeling obviously…. weird!

Inplant Operation

True to form I had to have a look straight away!

The hole in the corner of my eye and nose has grown large now….. it provides an interesting insight to the inside of a head, I suppose if I tried I could get a ping-pong ball in there…. as I said it’s quite big. I can use my fingers to pick away at the crusted on goo that sets everyday each time I flush through…. sounds gross… and it is for anyone watching…. but again satisfying.

The prosthetic

The prosthetic could be made once all the tissues were settled, and the implants had healed nicely. This was being made by Sarah at Charing Cross hospital that has many years in making all prosthetics. It took a long time as it could only be made a bit at a time, but I am really pleased with how it went. This is a picture she took when it was nearly done:

Prostetic

I was very happy when I finally got my prosthetic eye orbit.

OK the eye eerily remains open all the time, but it passes off well enough to walk down the street and people don’t really notice. When people do notice, they don’t seem to know what to make of it. The children are the best, they don’t miss a trick. Quite often I was asked asked what’s wrong with my eye!

Your skin tone changes when we are hot/cold blush or laugh and obviously the prosthetic remains the same colour, so it stands out, but you can’t have everything right?

Beware of the vacuum!

Moving quickly to the following year now, We had just been on holiday to Turkey.

It was the break we needed after a year of hell.

I couldn’t wait to go swimming.

Swimming is an issue now as any water just goes down the hole and down the throat.

But I wasn’t going to be denied! I took a snorkel mask as it would be ideal. It was ideal, but be warned, if you ever do this with your prosthetic still on….

As I waded towards shore, in chest deep water I wanted to clear the steam from inside the mask, so as I pulled the mask off, he vacuum also pulled the eye out and it plopped into the water!

I was like a rabbit in a car head lights! I’m now standing in a busy beach with a hole in my head for all to see, and my expensive new eye is looking at me at the bottom of the ocean!

Common sense kicked in and I simply put the mask back on and managed to retrieve the eye. Lesson learnt!

Me in water

Happy Christmas!

2012 had been a challenging year, and the Christmas holiday was coming fast.

There was still something missing though?

The arrival of little baby! The due date was the 14th of December and was now late!

It is my birthday on Christmas day, which has been a source of fascination to all over the years.

Surely he won’t be so late that he would be born on Christmas day too? No way! Sue was huge, we expected her to give birth early, she couldn’t possibly go 2 weeks late?

The countdown to Christmas Day continued and still no baby.

Christmas eve came and I prepared the dinner for the next day. As I am the cook in the house I wanted to get ahead so I could actually enjoy my birthday rather than cook all day.

Everything was set.

2am on Christmas morning Sue wakes me “I think baby’s coming!”

Harry was born Christmas evening. So much for my Christmas dinner, I got half a turkey sandwich!

Harry

So what were the chances of that? Harry was born of Christmas day, the same as his dad! What an amazing and perfect gift. We even made the local paper!

Paper pic

What’s next?

It’s now July 29th 2013 and over a year from my operation. I have just had a scan that shows no re-occurrence and things have almost settled to normal levels from the radiotherapy. This is such a relief. Still another 4 years to go of check ups, and unfortunately reconstruction.

I am now on the waiting list for the hole to be filled. There is an argument to be had to leave the hole, as if the cancer should return then there is an easy access to it. Plus as I wear a patch or prosthetic, it could be said it doesn’t matter about the hole as no one can see it.

I feel though that I don’t want a hole in my head for the rest of my life. I can swim again and it will stop the need to douche out the nose as well.

We discussed surgical options.

The original idea was to do a “forehead flap” which sounded OK but the hole is too big now and so an alternative has been found. After a bit of research I am glad, this poor bloke must have had a shock when he woke up!

Forehead flap

Instead my Plastic Surgeon Nial Kirkpatrick is taking muscle and skin from my back to fill the hole, which he will plumb into my blood supply by running a vein from my eye to my neck by tunnelling under my face!

Need to talk?

If you need to talk or find out more then please don’t hesitate to contact me or comment here. Up until now I hadn’t spoken to anyone apart from my GP about my treatment, and only then because he would offer “something to help if I felt down” but I never took him up on the offer. Please don’t be ashamed of asking for help.

I had been made aware of a charity called “lets face it” who specialise in supporting victims of cancer and disfigurement. It was only recently that I contacted them. For me it was to learn more and share my experience, this is my therapy, but I urge you to ask for help and advice as the reassurance you receive can really help you along this journey.

Me

My experience has given me a unique insight to cancer, losing an eye and disfigurement. If you are going through something similar or about to, then my advice is simply to hold on in there. Nothing will happen overnight, the road is long, but there is hope and life is for living and still there to play for! You will get through it,

I will continue to keep you updated with my progress.

Best wishes, Dan x

The story continues for many years.. please navigate through the blog posts for updates on surgeries, TV appearances, meeting the Royal family and much more!

Above all share my story, for there are hundreds of people like me, who are too sad or ashamed to show their faces again because of facial cancer.

PPS. please don’t do nothing. DOUCHEIT!

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15 comments

  1. Hi Dan just read your amazing story, also bought that mag you was in.Have to say you brought me to tears. What an inspirational young man you are and a credit to your mum, and Uncle Les would have been proud of you. Good luck for the future with everything and with your family, Harry’s a little cutie. Love cousin Sally. Xx

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  2. Dan, what a hard year you’ve had with many hardships and joys along the way. You have been very brave and I think this website is absolutely great. It makes the cancer journey ‘real’ which will help not only sufferers but also give insight to people who are affected by a loved one being diagnosed. I wish you and your family many years of happiness to come =)

    Like

  3. That’s why I’m proud to have you as a friend……..and although religion is not really my thing and i no for many others it’s the same.however if you ever find yourself needing hope then re read this blog………I have since found a religion……i call it Daniel Jacksonisum!

    Like

  4. Hey Dan,

    Just been reading your story. What a tough time you’ve had.

    I’ve been going through a “pre-cancerous” medical drama with my mouth and that was bad enough, but to face everything you’ve thrown at you in the past year and to come out the other side with a totally positive frame of mind takes some doing.

    I’m very pleased everything is working out OK for you now. Please keep us informed of your progress. I’ll make certainly keep checking back to your excellent blog.

    All the best.

    Regards

    Gavin

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  5. Stumbled across your story late on a wednesday night on…facebook, I’m not quite sure how…but anyway I read the entire thing from start to finish. Amazing read. I cannot even begin to imagine what you went through, that you found yourself compelled to have to look at the hole I think show’s your bravery. I wish you all the best for the future!

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  6. Dan im so proud to have you as my cousin. you are so brave an inspiration to so many. you have sue, your beautiful children, your family and friends who love you so much..stay strong and all the best for the future xxx ❤ cuz Tanya.

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  7. Hello Dan,
    I feel very privileged to have met you. The gang of Let’s Face It were delighted to hear your story when you came to ‘tea’ to meet other facial cancer patients. You are an inspiration and I am sure despite the cancer you have a wonderful future ahead of you! My love and very best wishes to you.
    Christine – LFI

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  8. Hi, I have the exact same cancer as you. I was diagnosed 31/12/13 and had my op on 13/2/14, my right eye as removed , RT started 31/3 and still recovering – I found it hell. I would love to speak to you and discuss prosthetics , eye patches etc. I have to decide whether or not to have a prosthetic soon. My op was 14 hours and they left no hole so I’m probably where you are now but it would be so good to talk to someone who is going through this as you know it is so rare.

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  9. I too have recently been diagnosed with the same cancer. I am going for a 2nd opinion at Mayo Clinic, Rochester, Minnesota, USA next week – I am hoping to find a less invasive surgery as I do not believe I have the inner strength to handle the disfigurement. I have actually been strongly considering not doing the surgery and look to radiation/chemotherapy treatment alone.(Putting it in God’s hands) The current doctors at the University where I have been going are BLUNT to say the least “I am going to put a large hole in your face, life as you know it will no longer exist.” They are giving me 3 plastic surgeons to put me back together, expecting 2 years. The graphic nature of what they will be doing to me I just cannot handle. The first surgery will be about 13 hours as they intend to do a free-flap at the time they remove the tumor. It is unknown at this time if the eye will be saved, that will not be known until they get in there.
    Dan, You have incredible strength, I wish I had a small part of that.

    Like

    • Hi Lisa

      I too have the same cancer as Daniel, lost my right eye, and have had a 14 hr major surgery which was in February this year.

      I would have loved to have been able to speak to someone before decisions were made so if you want to contact me you can on 07808688886 or email landpscott@hotmail.com

      I found Daniel after surgery and RT and it’s been invaluable speaking to him.

      I wish you the very best .

      Lorraine

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  10. What a truly amazing man you are. My husband is currently hospitalized and receiving chemo for sinus cancer. I would love some information on the type of exact cancer it was. My husband has INI-1 differentiated carcinoma. He is 32 …Radiation is next then surgery.

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    • Hi Samantha, great to hear from you and thanks for the kind words. I had T4a SCC of the ethmoid sinus. Basically skin cancer but not as you know it! I am guessing you are in the states? In the U.K. They take a more direct approach, surgery first and treatment after to mop up the microscopic cells. The great thing about that is that it gives you a much better survival rate, but is likely to mean you lose an eye, nose or roof of your mouth. I take it your husband will have a long gap between your radiotherapy and surgery? As you will see from my story, the effects of radiotherapy are devastating and the body does not heal well from surgery after?

      Like

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