All cancer is terrible and many of us have been affected by it either personally or through the suffering of family and friends. Each cancer presents challenges beyond the obvious which are unique to the location of the disease, treatment plan, and stage and age of the patient. For those who suffer from Head & Neck cancer, some of the most basic daily functions become a hellish task. I was diagnosed with tonsil cancer on 4 December 2019. It had also spread to my neck. I became a patient of particular interest having had multiple biopsies confirm that the type of cancer present was Small Cell Carcinoma (SCC – not what you want to hear). This made me the first ever patient diagnosed in Australia with SCC of the head and neck. Cases of primary SCC in the head and neck are exceptionally rare, particularly in the tonsil. The first reported case was in 1972 and since then there has only been eighteenth cases of tonsillar SCC worldwide. As my likeable Radiologist eloquently put “you won the super sh#t lottery mate.” Awesome, lucky me.
Doctors did not know why I had SCC in the head and neck and given the lack of research and understanding at the time, we did not know much about my odds for survival (although one genius who didn’t form part of my medical team practically told me I was done for). To be frank, I did not pay much attention to odds anyway. I made it clear that if only one patient diagnosed with the same disease had ever survived I will without doubt be the second. In reflection of a case study published about my case, I’m quite pleased we never delved into the discussion around odds. SCC of the head and neck is associated with a high mortality rate. Approximately 50% of patients die from the disease within a median time of 13 months from diagnosis despite aggressive treatment. The 5-year survival rate is reported to be only 5%. Despite the low sample size of data, it’s clear that I am a very lucky man to be here today writing about my journey in preparation for my upcoming 5-year remission date.
There is no way I can distill my entire treatment journey throughout 2020 and recovery in 2021 in such a brief summary (making writing this quite uncomfortable – a can of worms has opened, and I just want to keep writing). I feel like I am not doing myself or others who have suffered a similar journey justice. I do however wish that my 5-year remission anniversary, this blog and the fundraising efforts underway will mark the beginning of me having a more structured and helpful way to document a journey that has long been locked in my head and almost 5-years of journals. I hope to help and inspire others to prepare for and navigate the extreme adversity I lived through. My treatment and journey took many twists and turns. Each major challenge consisted of several contributing sacrifices and new dependencies (like lots of drugs and their side-effects, sleep deprivation, issues eating, and so on…). I can still recall meetings with doctors receiving more bad news and treatments starting where each moment was like I was awake in a living nightmare.
The irony at the commencement of my treatment was that I was quite fit and strong. This led my Multi-Disciplinary Team (MDT) to best communicate the treatment plan as “we are going to throw the kitchen sink at you.” I was cool with anything I had to do; I just needed to get started and I needed to live. My treatment consisted of three courses of a strong double dose cocktail of chemotherapy (Cisplatin and Etoposide) over a period of three months from Boxing Day 2019 through to the end of March 2020. Chemotherapy was tough. I cannot distill in one short paragraph the side effects and cocktails of drugs I had to take to keep my body functioning as well as it could do. I was told I would not lose my hair but one morning I woke up and clumps of it were on my pillow. That was a shock and upsetting but I got used to it.
I also had six weeks of radiation treatment on my neck and jaw starting mid-January 2020 through to the end of February. One day I’ll write in more detail the trauma that this caused me physically and mentally. Radiotherapy deprives patients of the basic functions you need to navigate the day. Particularly the final two weeks of treatment and first two weeks post conclusion. I developed severe burns inside and outside of my body. Eating became so painful I could no longer get any food into my body. I did not want to have a feeding tube and as a result received my nutrition and calories from six medical shakes taken daily. I did not eat a crumb of food for five weeks and lost over 10kg.
Towards the end of chemotherapy, I was admitted to hospital in agony with what a surgeon claimed was a perforated bowel letting air escape into my stomach (a dangerous situation). Surgery was apparently the answer but after presenting in a better condition than the scans suggested I made the call to wait it out 48-hours. Sticking to the theme of being a “rare” patient, the odds this time worked for me as my condition improved, and surgery was not required (this can happen with patients every 3-4 years where their condition can correct itself – God only knows how). I was sent home from hospital on 19 March 2020 due to concerns of a rapidly evolving virus called Covid having the potentially to seriously harm me post chemotherapy (having very little immune system). It was apparently safer for me to be “locked down” at home with no contact with any family or friends. We were in lockdown way before lockdown was even a thing!
Life started to feel like it was getting back to normal again. Once my white blood cell counts increased, I could start going out again and see friends. By this time my Mum and Brother had left Australia for the UK as the covid situation evolved. It would be two years before we would be together again. It was just the three of us – me, Katey and Millie and we lived in our own little private bubble navigating our circumstances as the rest of the country and world were busy navigating their own. I was so grateful to have them both. Katey showed me on a daily basis what a special human being she is – she consistently turned up for me every day and showed enormous strength and resilience taking care of Mille too. After waiting three months for treatment to settle I headed back into hospital for my PET Scan. I got the call several days later while out for lunch with a friend; cancer was still present in my neck. I felt sick to my stomach and did not know where this journey would take me next.
By the time of my first surgery the country was in full lock down. It was mid June 2020 when I was dropped off at the door of St. Vincents Hospital by Katey. I went inside to have a Modified Radical Neck Dissection knowing that my body will not look and feel the same again. Over forty lymph nodes were removed from my neck and the prior warnings I received were not wrong preparing me to feel like a sumo wrestler was sitting on my neck 24/7! During the surgery a biopsy was taken from what remained from my tonsil. This scared the crap out of me because I knew if I needed robotics surgery inside my mouth to remove my tonsil (Trans Oral Robotic Surgery (TORS)) it would be another ordeal where eating food would become tortuous and near on impossible. My biggest fears were realised when it was confirmed that there was still evidence of disease on my tonsil and robotics surgery would be required. On 5 July 2020 I was once again dropped off at the doors of St. Vincents hospital to have my tonsil removed in addition to part of the roof of my mouth (the soft palate). I woke from this surgery in agony. The sensation and pain were not good, and it took me to a dark dark place. It didn’t help that it looked like someone had shot a gun in my mouth. I could not drink water and as a result had to drink a thickened gloopy substitute. Equally as scary was the incessant thoughts of what next if there’s still evidence of disease. I began to make peace with potentially not winning this fight.
Several days into my recovery (still in hospital) I felt a growing ache and pain in my left leg. Katey helped me stretch it out on the floor of my hospital room thinking it could just be cramp and stiffness from a lack of exercise and movement. Later that evening a nurse checked the circumference of my left leg vs the right. There was an issue with blood flow and an urgent ultrasound revealed there was no blood whatsoever flowing from my IVC vein. My leg had completely clotted. The situation escalated quickly, and the pain was unbearable by the time I was placed into the surgical holding room waiting for the anaesthetist to arrive and do her thing. The vascular surgeon Dr. Evans calmly informed me that there was a 5% chance I’d lose my leg. Amongst the chaos I recall placing my hand on Dr. Evan’s and in great discomfort telling him that he worked in this hospital for a reason and my leg was not going to be lost. The surgery took six hours and was far from straight forward. I truly am lucky to have kept my leg and be alive today (a gauze inserted below my heart was catching large clots within twenty minutes of going under).
My body had been through so much trauma it was collectively agreed by the MDT that I should be placed in an induced coma and taken care of in ICU. This was tough news for all family and friends. Five days later I was brought out of the induced coma. I have only ever spoken about the detail of that experience with two people. It was the strangest day of my life and one that I hope to write about in detail another time. There was a high-risk of balancing being on blood thinning medication with a high chance of severe bleeding from the wound in my mouth from the robotics surgery. I was closely monitored for several more days in ICU where I was as high as a kite on the strongest cocktail of drugs I could possibly be on. I was eventually moved back to the ward after another three days or so where I was closely monitored. I was on the strongest of pain killers (although had been for months – 50mg Fentanyl patches). I could not speak (torture), I could not eat (again), and I could not walk. I was exhausted, lost, and struggling to get back to the mindset that had served me so well. I just wanted to be on my own Fentanyl planet and give myself time to recover and fight some more.
I spent another four weeks in hospital with limited visits from Katey, Millie and friends. Covid and lockdowns impacted so many, but for those who had treatments, surgeries and visitation thrown into chaos it was particularly hard. Our families from the UK were not even allowed in the country. These were the toughest times of our life and we were struggling to cope. Our friends were our everything and we will always be grateful for their love and support during these dark days. I had got to know so many of the amazing doctors and nurses in St. Vincents and managed to score myself an “upgrade” to the enormous dignitary suite which was reserved for special people. I made a compelling business case that my journey was quite special! After spending a few weeks getting back on my feet, walking again and dealing with speech issues, I was finally allowed home on 28 July 2020. I never knew it at the time, but the procedure on 5th July 2020 was the last time I would have cancer in my body. I was back in the gym lifting weights on 1st August. There was still a long road ahead and my fitness and mindset needed to be as strong as possible.
Lots of time passed. I struggled a lot both mentally and physically. I missed my family and couldn’t bear to think what the universe had in store for me next. Turns out it was the greatest gift we could all wish for. On Remembrance Day, 11th of November 2020 my surgeon, the amazing Dr. Julia Crawford called me. I could not answer it. As she always did and continues to, Katey stepped up and took the call. Green light. No sign of disease. Cancer free. We both collapsed with tears of relief and joy. This isn’t how I always visualised my reaction to the greatest news of my life. I always imagined a stronger version of myself screaming to the heavens like a boxer that had just knocked out his favoured opponent in the 11th round of a world title fight. But I was spent. I had a large piece of who I was taken away and my body just let a lot of tension go and I was a relieved, weeping mess. After so many twists and turns we could finally focus on the future and building the life that we dreamed of; happy, healthy, more kids and lots of love.
I feel a sense of great pride and at the same time guilt for ripping through such a life changing ordeal in under 3,000 words. Pride in reflection of mine and my family’s strength and resilience throughout this journey. Guilt because I feel I could have done more already to share the positives and the negatives of my journey to help others who are in the process of or about to start their own treatment. I hope this blog and the funds that are being raised will serve as a starting line for me to continue to process my journey and pay it forward to help others the way that some very special people helped me. More important in the short term, is the support from all of you spending the time to read about my journey so you can have a better understanding of the suffering that many others with head and neck cancer experience.
I would like the significance of my journey and this amazing remission milestone to double up as an important fundraiser to inspire you to help. For me, there is no greater privilege than to be able to exercise (in whichever way you can or enjoy) and put our bodies to work. I love a good fitness challenge and when I learnt that the Hyrox race in Sydney was being held of Saturday 5th July I knew that I needed to get working. Both with my training and also establishing the structure and message where my journey and my remission milestone can serve as a vehicle to help others in need. Thank you for taking the time and thank you for your generous donations to Head and Neck Cancer Australia (HANCA).
With health and gratitude
Mike Steele
Mike Steele’s 5-Year Remission Fundraiser 