We published Greg's story some time ago. It has been a popular post and has now been updated with the latest news and a new photograph of Greg on his farm. This picture shows the side of his face on which the jaw was replaced.
Adenoid cystic carcinoma is a rarer form of head and neck cancer. Therefore, I hope people out there, searching for someone who has experienced the same thing, will be interested to to read this account. It was written by Greg's wife, Kathryn. It 's a heartrending story, because Greg and Kathryn had recently lost their daughter to cancer. How does a family cope?
It’s hard to remember when Greg first started complaining about tooth ache. I think it was before we lost our beloved Caitlin to a rare cancer at age 21 in February 2014. During her illness she had always been our main focus and priority, so Greg put his troublesome tooth and associated aches and pains on the back burner.
After Caitlin had passed we were barely surviving, just existing in a black hole of devastation and grief. However somewhere during this dark time Greg attended several investigatory appointments, and eventually a time was made to have the tooth removed. We assumed that that would be the end of his on-going discomfort.
But the pain continued. He says it was always there, though some days worse than others but that he became accustomed to living with it. Perhaps the physical and emotional pain all blurred into one.
Eventually, he returned to the dental practice for further investigation. The dentist decided that the pain must have been coming from a nerve that was destroyed at the time of the extraction of the tooth. A one in a million kind of an occurrence that there was no treatment for and basically he was to put up with it and expect that it should resolve over time.
Being a typical kiwi guy, he took that as gospel and continued to live with on-going pain and discomfort in his mouth. As well as this, he was also experiencing an intermittent ear pain. It was a short sharp stabbing pain in his left ear that would always catch him off guard. We could be having a conversation or he might be immersed in a task when suddenly he would grab at his ear and wince in pain. He would say it felt like someone was poking a hot needle into his ear drum. This would only happen occasionally and of course he could never predict when. So again it was dismissed as something random and unknown. We briefly discussed seeing the G.P about it but both agreed that it would be difficult, if not impossible, to diagnose something that was only occurring occasionally and randomly. We did not ever put the two things together.
Eventually, he went back to the dentist regarding the pain. We were unsure what to do or who to see next, but it had been suggested to him that he could get a referral to the hospital for more investigations. It was a relief when finally a time was confirmed for a biopsy to be performed under GA.
Some days later he was called back to the hospital to receive the results. It was suggested to him that he bring along a support person but he headed off alone having been unable to get hold of me. I don’t recall being worried about the results; it never occurred to me that there was going to be something sinister to deal with.
He phoned me afterwards and I knew immediately from his voice that it was not good news. He wouldn’t tell me anything over the phone so I left work immediately and with my heart pounding furiously, I raced home. I endeavoured to prepare myself for bad news but the devastation of another cancer diagnosis, completely overwhelmed me. He couldn’t remember the type of cancer, only that it was rare. All details had gone completely over his head. I cannot describe the shock. I could not believe that we had been dealt the C card again. I wondered whether we’d have it in us to get on the cancer treadmill all over again.
Now in hindsight, it was glaring obvious that something wasn’t right, but he didn’t see it and I didn’t see it. The tumour might have been there for up to four years the hospital dentist said. The red flag had been billowing for all that time but we failed to notice.
And so just like that once again we were aboard the cancer train, still fragile and shell-shocked after our recent heart-breaking experience with Caitlin.
First, a CT was ordered to see if it was anywhere else. And then down to Auckland City for a MDM to plan how to go forward. We were beyond stressed as we had been told by the ENT team that if the cancer had moved upwards to his brain or was anywhere else surgery wouldn’t be offered.
On the day, we met with the Head Fellow who was in one of the two Head and Neck cancer teams in ENT. We both warmed to him immediately. He was sincere, approachable and reassuring. We felt that he had the time to spend with us and answer questions and that nothing was too much trouble. We knew by now that Greg had some lesions on his lungs so this was discussed during our consultation. We were informed that a percentage of the population are obliviously walking around with lung lesions that are completely unrelated to cancer. Of course, we hoped this was the case for Greg. The lesions were not going to alter the game plan, so surgery was booked for the following month. Mandibulectomy, neck dissection and fibula free flap.
The day of the operation seemed to drag on and on. I had waited for the call for many hours before it finally came late in the evening. I needed a few good deep breaths before heading over to the hospital to see him. I didn’t know what to expect, I didn’t know how disfigured he would be. I wondered if I had made the right decision asking the kids not to visit for a few days, I thought it would be best to shield them from whatever it was that I was about to see. Though the ICU is intimidating and I was scared, of course it was so good to see him. He was alive and breathing and the relief swept over me as I stood quietly alongside him. I could not escape however the overwhelming sense of sadness that we were back where we had been just a few short years before. And in the chaos of that austere clinical environment, I gripped his hand and grieved all over again for my precious daughter.
It was late when I left and went out into the cold winter’s night of a city that wasn’t my own. I struggle to recall a time that I have ever felt more alone. Throughout Caitlin’s illness, Greg and I were always together, always a united front. We always faced the appointments and the crises as a couple. So I felt completely lost stepping out into the darkness without him, and I was worried about what lay ahead.
Greg was looked after well in ward 74 but recovery from the surgery was tough and there were some very dark times. Every morning he would tell me he hadn’t slept overnight. He found his bed extremely uncomfortable and just dozed erratically. Though too late to be of much use, it was replaced with a brand new one on the day before discharge. The pureed food he was delivered we struggled to identify and it did nothing for his diminished appetite. Fortunately, our lovely daughter visited every day tempting him with appetising little morsels like mashed avocado and eggs scrambled with cream which was much more palatable and nutritious.
He couldn’t talk with his trachy, and sometimes he felt like he couldn’t breathe. Even though I was with him for much of the day, I think the nights were a lonely and bewildering time for him. There were occasions where his bell went unanswered and he thought he was going to die alone in his hospital bed. There were moments in the early days when for the first time in his life, he felt alone and frightened.
The discharge date was awaited like a beacon of light in the darkness. Finally after two weeks and all the necessary check boxes ticked, we set off at a steady hobble, crutches in situ and a carton load of Fortisip under my arm to Domain Lodge. We were both anxious to get home to Northland the next day; we had missed the farm and our own quiet sanctuary.
The weeks went by with Greg’s jaw healing well, though the wound on his leg took much longer to repair. The district nurses came regularly to tend to it which we were hugely grateful for. Gradually he was able to extend his food repertoire beyond weetbix and scrambled eggs, though as he was now minus most of his teeth on one side, he avoided anything that required much chewing.
Radiation therapy (RT) commenced in October and once again we juggled schedules and moved our lives to Auckland for six weeks. Some weeks due to work and farm commitments I would stay home and he would live in Domain Lodge on his own. Not one to sit idle, he kept occupied and busy by doing handy man jobs for his nieces on the North Shore during the week days, and looked forward to getting his Friday treatment done and being back home in Whangarei by lunch time.
Fatigue started catching up with him towards the end of his treatment. However almost from day one he really struggled to cope with the smell of food, especially food that was cooking. This prevented him from going near the kitchen at Domain Lodge and sometimes even the hallway was a challenge. Unfortunately that made it hard to interact or be social with the other Northlanders who were staying there.
Somewhere over this time he lost his sense of taste, and that combined with his extreme sensitivity to smell meant that it became a real challenge to tempt him to eat. Consequently, the weight began to fall off him.
It was a great day when his RT was completed; he felt it would have been a real struggle to do another week. Our joy at arriving home was somewhat marred by NDHB mail advising of a CT lung scan for the following week. The timing was unfortunate as Greg was by now completely exhausted on all levels. I think neither of us were ready to face any more appointments for a while. However he presented to Whangarei Hospital Imaging department on the following Monday and then we prepared ourselves for the hard part, waiting for the inevitable results. On Friday, I received a ‘manage my health’ alert email. Upon investigation I was stunned to see it was the result of Greg’s recent CT scan. It was a shock as I assumed we would be called in to discuss the result with either the G.P or his Radiation Oncologist. I endeavoured to wade through the ominous medical terminology but there could be no mistaking the words that said that the lung lesions had grown. This was devastating news. I felt sick and couldn’t bear to tell him, even though it was his result and he had a right to know. I couldn’t say the words. It was a heavy and dark secret that I carried all weekend.
The next Monday we attended a follow up radiation appointment in Auckland to check on his progress post treatment. It should have been a standard consultation but at the end I mentioned about the CT scan and the result we were awaiting. I didn’t disclose that I had seen it. In fairness I could see that I had caught the doctor on the hop. He read his screen while we watched on and then excused himself and returned with the consultant, Andrew McCann. Things suddenly became serious as I suspected. The consultant told us the lung lesions had grown. Greg had no idea and was ashen. He went on to say that people can live with lesions such as these for two years. This was a further shock as prior to surgery we had been advised that if these lesions were secondaries they may cause no trouble for ten years or more. In a heartbeat Greg had just lost a decade.
It was a harrowing week. It’s hard to think or function normally when suddenly your hopes are shattered and life becomes measured in months. We couldn’t find the words to tell our kids. We just existed, with the shock blurring all our senses. One thing we pinned our hopes on was the fact that at the time of the consultation, only the report was available, not the actual images. So I hoped that perhaps the reporting might be reviewed in his favour. We were assured that his images would be taken to their next team MDM. The following Friday, Greg was phoned by the Radiation Oncologist to say that after further review and discussion it was agreed that the lung lesions had in fact changed little, if at all. After the week from hell, that was heaven sent news.
So that was the lungs sorted for a while; next to tick off was an appointment for a head scan. Mid-January was the date given at the earlier appointment with Andrew McCann. It came and went. So did February. I was worried about Greg falling through the cracks as we hear sometimes happens. I found it really hard not having a ‘go to’ person like we did with Caitlin during her illness. Her medical oncologist was always available by email and it made communication so much easier. This time I had no idea where to turn for support or advice. It felt like we were between hospitals and didn’t really ‘belong’ to anyone. Eventually, I connected with the ENT nurse at Whangarei Hospital. She was able to tell me that a lung scan for June had been requested but there was nothing else. I tried to phone Auckland Hospital but was passed on from person to person and got nowhere.
So we waited for our ENT review booked for the end of February with the ENT consultant and hoped that the time delay would not be detrimental.
As it turns out the next scan is not scheduled until June. In this situation it feels like a very long time to wait. It is hard to not know. What we do know is that not all the cancer was able to be removed during surgery; we also know that ACC does not respond to chemo. Therefore Greg’s future depends on the success of the RT. It feels like we are in a kind of limbo, always waiting and wondering. Do we try and move on? Do we dare to plan things, or would that be tempting fate?
And that is where we are to date. It’s not over; there is still much ground to cover. But we are wiser and I think more educated now. We are getting, I hope, more skilled at navigating our way through the health system. With each other we have had the hard conversations, but remain always positive and hopeful.
Prior to Greg’s diagnosis head and neck cancers, especially Adenoid Cystic Carcinoma, was a mystery. I had only known one person, a friend and a colleague, that had a Head and Neck cancer. His diagnosis was a complete shock and it seems unbelievable that Greg’s followed closely behind.
I would like to acknowledge everyone that has supported us to date; the Whangarei ENT team, the Auckland Hospital ENT surgical team; Ward 74, and of course the wonderful ‘family’ that is the Head and Neckers support network.
It has been a year this month since Greg’s surgery. He had a total of 8 months off work but he’s now back doing full shifts at Fonterra. Usually 12 hour days, (or nights). He gets tired but sleeps well when he goes to bed.
He has gained about 5 kilos of the 14 that he lost and is beginning to enjoy food again. There is really nothing that he can’t eat now and sometimes certain foods even taste as they did prior to surgery which is always cause for great excitement. His mouth is good and he has had no issues with bleeding or pain. He attends frequent dental appointments at Whangarei Hospital and has no problems with his teeth currently.
The swelling on the side of his face eventually settled and is now barely visible. In fact if you didn’t know him you probably wouldn’t notice.
His leg healed eventually and now, apart from the occasional sensitivity, causes him no problem at all.
It took him no time to be back in his gumboots (one boot for the first month or so) and hobbling around the farm. Two months post radiation we were hay making on our property. It was agreed he could drive the truck to collect the bales, but every time my back was turned he’d be on the ground throwing them onto the deck with the other blokes. Every day rain or shine he is outside doing something. If anyone needs assistance with anything, he is the first to put his hand up.
The results of his scan from last month showed that the lesions in his lungs remain unchanged and there was nothing of note to report from the images of his head.
We have a leave pass for six months which we are so thankful for, and then it must be done all over again. The time leading up to these scans is incredibly stressful and worrying, but we are thankful that he is being monitored.
So things are okay. We’ve been to the dark side, but now we are back. Goal posts have moved and we are looking at life with fresh eyes and learning to appreciate what’s important.