This is my story

23 years ago I was anonymous?in the world. And happy to be so. I was an architect in a little town in Ireland and working from home with my wife Pam, and our 3 small boys. I had never been ill. I had run 6 marathons. I was never destined to be writing these words.

Then, out of the blue, I began to get headaches.

I was eventually admitted to my local hospital with a suspected sinus infection. There was no reason to suspect anything else. I got on very well with my E.N.T. consultant and we went from laughing and joking?about the very routine procedure he was about to perform, to him arriving at my bed the next day and the smile I greeted him with only received a deadly serious expression in response. Something was very wrong. He told me that when he went into my sinus he was shocked to find a massive, stage 4, tumor. It was, he said, the second worse case of Head & Neck cancer he had ever seen.

The worst case was dead in a month.

And that was all he had down for me too.

My tumor was so advanced and so extreme, he told me, that very few surgeons in the world would have the ability to even look at a case like mine.?But the double problem I had was the tumor was so complex, lodged right through the middle of my head, and so advanced that it couldn’t all be removed surgically. I also needed a radical radiotherapist. Somebody who would close the text book and write a special program just for me. There were very few of them around too. If they did exist, he said, and were prepared to treat me, the chances were the surgeon would be in New York, but the radiotherapist would be in Tokyo.

I needed the two of them in the one place.

Now!

The end of my life had just appeared right in front of me. I simply had weeks to live.

The very first chink of light in the amazing black hole I now found myself in was standing right in front of me. Over the two days I had become good friends with John Fenton and I was able to ask him the ultimate question any consultant can be asked. What would you do if this was you”

He told me he had spent 3 years in what he regarded as a centre of excellence for Head & Neck cancer in Liverpool. The people there he said, would be more familiar with the condition I now had.

If he was me, he would go to Liverpool. But he conditioned it by saying he didn't expect them to say anything different. My tumor was so severe it was inoperable.

The chink of light however was at least I had somewhere to go. I still had hope and because he knew the people in Liverpool he was able to get me a referral within a week.

A week later Pam and I went to Liverpool to meet Professor Simon Rogers, who was the head maxillofacial surgeon in Aintree University Hospital and David Husband, who was the chief radiotherapist at Clatterbridge Hospital. What is lovely about living on is that you are told little bits of your story years later when it is more appropriate to do so. Apparently at that meeting both of these men also believed I wasn’t going to make it. My tumor was simply too advanced and too complex. The surgery to try to remove it would be massive. It was almost a certainty that I would not survive the operation required. But they?were assessing more than just my physical condition. They were also assessing if you could cope with the outcome if you were to survive. If I did survive it was almost certainly only going to be to a very poor quality of life, with severe disfigurement and disability. And at best, for no longer than a couple of years.

The problem with serious Head & Neck cancer is the complex treatment required will invariably put you in the grave before the cancer gets to. If I was still alive after the operation, the surgery required was going to be so destructive that I was likely to lose my sight, my speech, my hearing and because the tumor was right up against my brain stem and the top of my spine, my mobility or my brain function The most likely scenario of all was I was going to lose some combination of all 5.

Survival was all that was on the horizon. Anything beyond that would be a bonus.

The good news was, both myself and my wife Pam, ticked all of the other boxes. I had great acceptance of where I was, I knew exactly what was in front of me, but I just wanted a chance to fight. If I was to go down, I wanted to go down in the ring with my gloves on. I wanted to be given the chance to try to stay alive.

At that point I was so strong I didn’t care what version of “alive” I ended up in. If I was alive I was winning. And cancer was losing. I would only worry about recovery when I was alive enough for recovery to be the next stage. So in the end they both felt they had to offer me the chance of treatment. They reminded me that I could be trading in my last few months of life if I risked the operation. But I told them that if they had faith in me to offer me a chance, then it was my duty to everything I believed in to take that chance. I would not look back no matter what the outcome was to be.

So against all the odds, I had found a surgeon and a radiotherapist in the one place, who were prepared to give me a chance. That was all I was looking for. When I asked them what they felt that chance was they didn't want to admit to me that they didn’t think I would make it so instead, very cleverly, told me I had a 5% chance. Low enough for me know my prospects were not good, but it wasn't zero, so I had hope.

My operation was so big it took a month to prepare. They do the big Head & Neck surgeries in Aintree on the second Monday of each month. So we returned to Ireland. Those were strange days. Suddenly I had time on my hands with the end of my life in sight. I ran every day so that my body would be in its best physical shape when it went on the slab. And we had one last memorable night in my local pub with friends and family just before I left. Many people in the room believed they were seeing me for the last time and they were probably right to do so. But I didn't want it to be a sad occasion so I wrote a funny poem about how the town would have advanced by the time I got back. I made them all laugh and showed them I was strong and ready. And the next day we headed for Liverpool.

Two days before my surgery I had a peg tube inserted and at 8.00 a.m. on July 8th, 2002 the trolley arrived to bring me down to the operating theatre in Aintree University Hospital. It was the strangest journey of my life. I remember it being a long distance by the amount of ceiling tiles I recorded as I looked up. And I remember clenching my fist as I passed the little multi-denominational church about half way along. I was fully aware that these could be my last few conscious moments in this life.

I came around in the intensive care unit two days later. The first milestone had been achieved. I had survived the surgery. As I looked down along my wretched body I was more machine than man. I was breathing through a tracheotomy and being fed directly into my stomach by a peg tube. I also had about 15 other tubes coming out of me and my face looked like a scene from the Elephant Man. I could not walk, talk, eat, drink or sleep and although the medication took care of the severe pain, I was cocooned in a personal agony of what can be best described as 24 hour discomfort. They will forever remain as the toughest days of my life.

I literally spent these days just wishing a week away. “If you can just get yourself through to this time next week” I kept telling myself “All of this pain and discomfort will be gone. You will be a normal person again, disconnected from the machines. The only enemy you have right now is time.”

My running experience was a great source of strength to me at this stage. The day after I was brought back to the ward one of the nurses removed the first of my tubes. It was an anesthetic feed in my foot. When she did, I just clenched my fist and thought, one gone, eleven more to go. It was just one little tube but its significance did not go unnoticed. Just as every long run is made up from thousands of individual strides, my recovery was going to begin with this one little tube being removed. Every marathon must begin with the first step, the first hundred yards, the first mile. I had started running, I had taken the first stride of the marathon of my recovery. All I now had to do was keep running. If I did the finish line would come to me rather than I go to it.

This was going to be my tactic for my recovery. Run what you see. All I wanted was some small bit of progress for each day that came. This could be the removal of a tube or to sip from a glass of water or to sit up. All of these small steps would eventually take me to the point where I would be able to get out of bed and talk, eat, drink and walk for the first time again.

I hated the tracheotomy. It was the worst part of all. Apart from being physically uncomfortable it had the psychological affect of tying you to the bed like a noose around your neck. I appreciate that with my mouth out of action it was keeping me alive, but it was not pleasant. Its greatest infliction of pain came when it made me cough. Coughing was the one thing I did not want to do at that early stage of my recovery.

When the tracheotomy discharged air down my throat it moistened it. This moisture would then collect on my chest. I would not be able to withstand the build up for long and would need to cough to relieve it. However the most painful part of my body at this time was my newly re-shaped hip and the stomach contraction that each cough generated sent a searing pain across my lower abdomen. I was trying to avoid coughing at all costs. I would resist for as long as I possibly could but eventually the moisture build up would be too much to bear. I would then just brace myself for the acute pain strike. The tracheotomy was also lodged in the middle of my throat so the coughing was largely ineffective in any case. I was caught in a vicious circle. The most painful vicious circle I have ever experienced.

The nursing staff were obviously aware of the distress the tracheotomy generates. They would also relieve the moisture build up with a suction tube. They came at intervals to do this but unfortunately, it was also extremely painful for the mute patient. You welcomed their intervention on one hand as the suction tube provided a longer relief between coughs, but on the other, you dreaded it even more. The discomfort of having the tube steered down your throat was excruciating. It was even more painful than my sore hip. All of this pain was now being laid at the feet of just one culprit, the tracheotomy. Saving my life and part of my jigsaw or not, we were never destined to be good friends. It is difficult to embrace something that insists on causing you pain.

For that first week of recovery I was stripped right down to the very basics. I felt as if I was alive but not much more. Most of my senses had been inactivated and I was effectively cocooned in my own little world of tracheotomy, tubes, exhaustion and silent discomfort.?My only line of communication with the outside world was to write some hand written notes when visitors came but I would tire easily.

This was now to be the first great test of my mental ability to deal with the extreme states of pain and senses depravation. This was the marker for how I would perform when the going was to get even tougher. I needed to know now that I had within me whatever it was going to take. I needed to know that my strength and my resolve could be depended upon right to the end. The time had now come to go deep inside myself and see what was there. It was time to see what I had in my reserve petrol tank.

I was now going to need to visit every part of my body. Parts that I had never called upon before. Every inch of the body matter that is uniquely known as Liam Ryan would be relied upon for this challenge. There was no part of me that could afford to not respond to the call.

With my body in meltdown I began to recognize all of the fundamental activities it had been performing for years. Rather than mourn their temporary loss I suddenly began to appreciate how fortunate I was to have had them in the first place. It had taken me until I was now lying in intensive care without the use of them, to truly see all the amazing things my two hands and 10 fingers had been doing every day. And they were just the simple things like scratching my nose or brushing my teeth. I now, probably for the first time in my life, realized all the wonderful things my body could do. Up to this I had been able to walk, I could see, I could run, I could talk, I could eat, I could swim, I could hear, I could taste, I could sleep. I was able to do so many things that many people throughout the world could not. These were only the simple things. I could also drive a car or fly in an airplane, climb a mountain or ride a roller coaster. All of a sudden I realized I wasn’t one of the unlucky ones anymore. I was one of the lucky ones. It was only now, when I was denied these wonderful attributes that my body could perform, did I begin to appreciate how fortunate I was to have had them in the first place. Now when it would have been very easy to slip into disgruntlement due to my condition, I discovered I was never more appreciative of my place in the world.

In assessing my predicament all of my thoughts were turning into positives. For that to happen all I needed to do was dig deep enough. Although I was in a swamp, my mind was always able to find the only solid path that would get me out. It was telling me that it was not the time for fear, or regret, or bitterness. Now was the time for appreciation and strength and resolve. Only on that rock would my survival be built.

With this newly discovered re-appreciation my promise to my wonderful body now was to do everything I could to restore it back to its original condition. That was all I needed to focus on. Then I could start to re-appreciate its great abilities all over again. I vowed that I would never again take them for granted. I would never again become complacent about all of the amazing gifts I had been given as a human being. We do not realize how incredible it is to talk or walk or see, until they are taken away.

Now I was strong. I was grateful to my body for what it had been before and at ease with where it was now. We would tackle this recovery piece by piece, day by day.?I was prepared to accept whatever condition we got it back to, even if I had to let go some of the powers it had before. Both body and mind would do their very best. This mindset was to be a big watershed in my cancer battle. At that point I knew for certain that I had the resolve within me to withstand anything my recovery was going to throw at me.

Two days after I got back to the ward Simon Rogers, my surgeon, came and sat on the end of my bed. He began to describe all that had taken place during the course of my operation. He told me they started by cutting my face from just below my ear across to my nose. Then they broke my jaw and cut right down to beyond my chin. At this point they folded the lower section of my jaw away to give them direct access to my sinus and beyond.

Before they could start to remove the tumor they had to sever all of the nerves that were running through the middle of my head. These were all blocking their path. This was very intricate work and each one had to be carefully positioned for later re-connection.?He described this part of the procedure as similar to taking the engine out of a car. Before you can remove the engine to begin work on it you must first disconnect all of its many connections to the remainder of the car. There is nothing wrong with any of these connections in themselves. They are merely in the way of the work to be done. Their disconnection however brings extra risk to the success of that work.

When the engine is fixed the work is far from complete.?All of the connections must then be put back in place before the car will go again. In my case the connections were all of the nerves travelling from my brain to my eyes, ears, nose, mouth and down my entire body.

Once that work was done the way was clear for the removal of the tumor to begin. They began with the base of the sinus and removed half of the roof of my mouth and half of my top set of teeth. They then removed all of the soft tissue in the sinus area. Because my cancer was so advanced it had already began to attack my cheekbone, so after all the softer tissue had been removed they then had to cut away all of the damaged bone that they could see. He explained to me that they then had to follow the tumor around my eye to my brain stem. This is where the top of my spine connects with my brain. This was the most difficult area because they were working only millimetres from my brain and spine. Anything going wrong could have resulted in brain injury or paralysis.

When they were satisfied they had removed all of the cancerous tissue they could see it was time to begin the repair work. The removal of substantial tissue and bone to my face meant they were now left with a large cavity that needed to be filled. This would be too big to heal naturally. The structure of my entire face had been undermined by the amount of material taken away.

Their next job therefore was to cut me open at the top of my leg and to saw a slice of bone off my hip. They also took tissue from my stomach to fill the void created by the cancerous material they had removed.?Whilst they were salvaging filler material from my stomach they also took some lining tissue. This was to be used to attempt to reseal the roof of my mouth. This is called a flap. He told me that this is the most effective way to carry out this particular piece of repair work because as natural body material it will bond to form a perfect seal. This is important in the mouth area especially. If it was successful it would mean that every time I drank I would not have any leakage from mouth to nose. If the flap did not take the only other option would be to use an artificial plate, called a bung. This is effectively a type of denture. It would however not seal perfectly and I would always have a certain amount of discomfort, between nose and mouth, as a result.

Once they had extracted what they needed from my hip the rebuilding of my cheek began. The piece of hip bone had to be shaped to suit the area it needed to fill. Then it was screwed into position with two metal screws. The stomach tissue was then used to try and fill some of the excessive hole to my cheek. A smoother section of this material was shaped and carefully placed in position to become the flap to the half of the roof of my mouth that had been cut away.

At this point all of the tumor they could find had been removed and the necessary rebuilding work had been completed. The engine had effectively been repaired and put back in place. Now it was time to reconnect all of the various pipes, sparks plugs and hoses that were required to make the rest of the car work.

They were now well into my operation but everything was still critical. The re-connection of the nerves was extremely delicate work and just as essential to a successful outcome as the removal of the tumor. I briefly amused myself with the possibility of the surgical team getting some of these re-connections wrong. I imagined myself making a full cancer recovery only to blink my eyes two weeks later and discover my ears twitched instead!

When all my nerve connections were back in place the next job was to put my jaw back together. This was always going to be the most uncertain element of the reconstruction work. Simon had always warned me from the outset that this part of the procedure was always going to be impossible to predict. He could not know exactly how much bone would need to be removed and therefore could not be sure how well the jaw would go back in place. He wouldn’t know the extent of this work until he could see the cancer-attacked bone. As this part of the surgery was indeterminable he had always made a point of preparing me for the likelihood that I might not be able to talk or eat once the surgery was completed. The jaw was not going to be able to go back to what it was before. How good it would be, nobody could be sure.

All of these issues were going to have a huge impact on my future quality of life but, at that time, they were practically irrelevant to me. It was one hurdle at a time. The first one was to stay alive. I was solely focused on overturning the major odds that were against me. I just wanted to beat my cancer. I didn’t really care what I needed to do to achieve that goal. I would have accepted blind, deaf, dumb or a wheelchair as a consequence if necessary. At that point the likelihood of my death was so big on the horizon that nothing else really mattered.

This single mindedness was probably the right approach at that stage. I could not have afforded for anything to dilute my conviction to survive. Ten years on however, I now hugely appreciate all of the abilities that have been restored to me throughout my recovery. I have an entirely new sense of value about being able to see, hear, speak, eat and drink. Survival is one thing, recovery and resuming a normal life is another.

In the end when my jaw was put back in place I found I was only able to open my mouth about half an inch. Remarkably this appears to be just enough for me to still speak perfectly. I can also eat every food type I ate before, except, in some cases, I have needed to devise new methods to shuffle them in. The greatest destruction of the surgery occurred to my jaw, my cheek and my right eye so of all the many miracles I emerged with in my second life, the ability to still see and speak perfectly are treasured most of all.

When the work to the lower jaw was done most of the major reconstruction surgery was then complete. All that now remained was the 130 stitches it would take to close the wound to my face and whatever stitching was required to the cut at my hip. Due to it being a facial operation the surgical team wanted to minimize the possibility of any permanent scarring to my face. They were all tired at this stage. They had been working on me for 11 hours and were nearing the end. But the stitching work was just as intricate as much of their earlier risky surgical procedure. The stitches needed to be very small and frequent so that both sides of the wound would have maximum contact to enable it to heal seamlessly. Each stitch consequently was laborious to insert.

I got first hand knowledge of this myself about a week later when a nurse came to remove them. She told me that removing my stitches took her about six times longer than normal. The stubble on my face had started to grow back by then and the little stitches bore a remarkable resemblance to each one of my many facial hairs. She had to find each stitch first before it could be snipped for removal. In the end she had no option but to use a magnifying glass to determine which was thread and which was hair.

When the last stitch was put in place in the operating theatre it was 8.30 p.m. Simon told me that it had been a twelve hour operation. He explained that as surgical procedures go, it was as big as they come. My operation was on a par with anything that would be carried out after a major traffic accident. I had all my original blood replaced during the course of their work.

He told me that by the end they were all exhausted. They needed maximum concentration right to the end. The work they were undertaking in the last hour was just as precise as what they were doing in the first. The work around the brain stem was especially critical. Any slip could have been catastrophic. He said to me that I was in danger right up to the end and would remain in danger for two or three weeks at least. He then reminded me that even now, I still had a long way to go in recovery before the success of the surgery could be determined. The flap on the roof of my mouth was very delicate and it needed to be inspected every few hours and could be rejected, or get infected, at any time.

He concluded by saying that from his point of view, as the surgeon, he felt all had gone as well as he could have expected. Everybody was satisfied that all of the tumor they could see had been removed. It was over to the radiotherapy now to hopefully destroy anything that may have been left behind.

For all the time whilst Simon Rogers was speaking at the end of my bed I was just in awe of this man. The more he spoke the more embarrassed I became about what I did for a living. Up to this point in my life I had no appreciation of the incredible work that surgeons do. These unbelievable people had just spent twelve hours in the middle of my head.

A twelve hour day is a long day for anybody. It is a long day for a waitress in a café or a construction worker on a building site or an accountant in the office. But these people weren’t serving coffee or drawing up a tax return. They were deconstructing the head of another human being. Your head is your computer. It contains your brain, your eyes, your ears, your nose and your mouth. They were then delicately removing a vigorous cancer tumor from the very middle of the most complex part of the human body, the head. Then they had to re-build all of the deconstruction work they had done. They had to carefully reconstruct and reconnect everything again. On completion their concerns were not just limited to how well the tumor had been removed, but also to how well this head would ever function again.

That head belonged to me.

I just felt so guilty as this man at the end of my bed was describing what they had all done. Surely there is no greater work than this.

I was simply spellbound as he spoke. These were the most incredible men and women I had ever known. I was humbled by the extraordinary work they do. I was also acutely aware, for the first time, of the consequences of that work. Sometimes it will not go to plan. The rest of us can have a bad day but a bad day for these people means somebody dies when they did everything they could. I needed these men and women much more than they will ever need me. But I had no awareness whatsoever of the work they did until now. My need from them was the ultimate need of all. It was the need to be kept alive.

I realized I had no understanding or appreciation of hospitals or the health industry up to the point in my life. Many of us suffer from this lack of awareness. As a consequence health cuts in governmental budgets are often seen as more palatable compared to sacrificing a major road building program or a new bridge or factory. In one case only a few hundred people will be affected but in the other a few thousand will be impressed. However it is only in the case of the health cuts where you can be certain that people will die. All of this comes home much more clearly to you when your surgeon sits on the end of your bed and begins describing the work he has just done. He told me that surgery doesn't get any bigger than this and admitted to me, years later in his car one day. that nobody really believed I would make it that day.

And that was just the beginning. Because everything was now opened up to the brain I was very fragile in early recovery. I went on to get two separate bouts of bacterial meningitis and a D.V.T. when I returned to the ward. All three episodes nearly killed me by themselves which would have been ironic. He gets one of the worst cancers going and died of meningitis.

So when everything was taken into account I really should have died many times in 2002. If I survived for 5 years with a very limited quality of life it would have been miraculous in itself. But now, 23 years later, it is the length and quality of the recovery, rather than the survival itself, that has made this story as big as it is. I have now become one of the greatest cancer survivors there has ever been and they are not my words, but the words of every oncologist I have met since 2002.

Now that I have started my second life, post cancer, I realize that the people who daily inhabit the mini-city that every hospital is, perform the ultimate work of all. It just doesn't get any bigger than saving or improving peoples lives. From the porters to the managers, everybody in a hospital plays their part in the greatest form of human work of all, man looking after his fellow man. Without Blathnaid MacCurtain, Carmel O’Sullivan, John Fenton, David Husband, Simon Rogers and all of their wonderful staff and assistants I would not be sitting here now writing these words. I am forever indebted to all of them for every day I shall live from now on.

So to all of you out there in the medical world, Thank You.

And to conclude and bring this story up to date, 10 years after Simon Rogers sat on my bed, In 2002, on the tenth anniversary, I wrote a book so that this story would be preserved for all time and ran my first post-cancer marathon.

And today, 23 years later, I didn't just survive to a poor recovery, I am fully back in the world again. In 2016 I became the first ever architect at Tipperary County Council where I still work today. It is my recovery rather than my survival, that has made this story one of the best there has ever been. From a small place in Ireland it has now found its way to all parts of the world to encourage cancer patients everywhere that nothing is for certain.

I should have died many times in 2002 but I am still here. Every single day since has been an amazing bonus. And every day, I am eternally grateful, that this story decided to pick me.

You never give up. Because none of us can ever really know for certain what can happen.