I have been a keen motorsport enthusiast my whole life. Each year, with a bunch of mates we meet up at Bathurst for weekends of speed and good times. 2016 was no different from any other year, except that after the race session, something was not quite right. I had noticed my voice was becoming hoarse occasionally in the weeks leading up to our Bathurst event in February 2016. I felt physically very well and, as always, was looking forward to the event with all my mates.
I drove back from that Bathurst 12 hour event, concerned that my voice was not only hoarse but I was “unable to speak regularly over the weekend”. I was really struggling for voice and in fact, I almost had no voice. I went straight to my GP when I returned and immediately asked for a referral to an Ear Nose and Throat specialist. My doctor floated the idea that I might just have bronchitis, but I was insistent that I felt fine ad it had to be another issue. I felt physically well and had just had a great race meeting, but my head was telling me something was wrong.
I had my appointment with an ENT in March and was booked in for a biopsy. I was diagnosed with a Glottic Cell Squamous Carcinoma on my vocal chords. The treatment was then booked in for my 30 days of radiation therapy in May/June 2016.
During this time a family friend suggested I meet with a specialist they knew to get a second opinion. It proved to be the best advice I was given!
At the completion of my radiation program I was given the all-clear.
I took my results to the ENT who was recommended for the 2nd opinion and was advised that the tumour was still there. I then commenced with a regular surveillance program and after several months of reviews, by December 2016, my hoarse voice returned and it was clear was that the cancer was re-growing. I was booked in for another biopsy in January 2017.
Following my biopsy, one of the registrars, a delightful person, said “if we ring you tomorrow and cancel your Friday appointment, I want you to go and buy a lotto ticket. If we don’t ring you, Friday’s going to be a long day for you.”
That Friday I walked into the clinic asked, “Did you forget my phone number?”. Her response was, “Today is your day.” From this point, I swung from one personal high to a low and from one trial to another.
During the lead up to the operation and recovery I was provided with a wealth of information by my medical team, and also did an immense amount of research myself. Almost to the point of having information overload.
In January 2017 I had my full laryngectomy. The reality hit when I woke up on the ward, with a neck full of metal staples and a hole in my neck, and hit hard. That is when the real journey started for me.
It was life-changing and I knew I had to adjust, and quickly too. The first thing I had to do was to get my mind right. While in recovery, I got up every day and did a circuit of the 100 metres of the ward floor. By week two I was walking 60 laps; six kilometres a day. It helped focus my energy and also get my body working. It was for me preparing to get outside to start enjoying life to the very best of my ability, as soon as I could speak and be discharged.
With the encouragement of the fabulous caring nursing and surgical team at Epworth Richmond and a fair amount of hard work, I was able to start talking again just ten days after surgery. After twelve and a half days I was back at home ready to face the next steps.
Getting back into public life as a ‘Lary’ was not easy. People often stared: eating and drinking was always a delicate process and I had the frequent bouts of coughing and sneezing. But over time I adjusted to these bumps in the road. I needed a windscreen wiper inside of my car screen after I sneezed several times while driving. It impacts every aspect of daily life and each Lary has his or her own unique set of challenges. Some of these issues affected me with self-confidence and even relationships. But time is a great healer as my confidence grew and I adjusted to the ‘new updated modified me’.
Among the many new things I had to learn or understand, I became aware of the cost of the ‘best practice for living as a Lary’. The cost of the Heat and Moisture Exchangers (HMEs) and associated products to provide the best health options for living as a Lary was prohibitive to most Larys.
With the help of some very good friends and a strong network, a small group formed a strategy to win Government HME funding and ‘Give Larys a Voice’ we were granted Govt funding. Life for a Larykin just got a whole lot better and healthier for us all.
This event, in turn, led to the formation of our group, ‘The Larykins’. It started as a small group of Larys who met socially and understood and cared about the issues that Larys encounter. We shared and supported as much or as little as needed. Some of these Larys have also been strong advocates in our journey for funding.
These are the daily challenges that we Larys face. Living with a stoma was a major adjustment for me – I had a very strong support from family, friends. mates and a wider network. They each cared, encouraged, supported and pushed me along. Their support was invaluable and still is.
With the professional and expert care and attention from my Surgeon Ben Dixon, “Speechie” Louise and the team of magnificent dedicated nurses on Grey Ward 5, I carefully worked into adjusting to life with my stoma. I am pleased to say that it is now just “second nature” to maintain my stoma, change HME and clean my Voice Prosthesis. I ‘voice’ daily and can make myself heard. Those medical professionals made my return journey to “my new normal life” so much more painless and easier to adjust and accept my ‘new life’. Without all their care my road to recovery could and would have been much more challenging.
We now have a strong group of ‘Larykins’ and supporters who work to raise awareness of all Larys. We all share to support, educate and advocate with other people, groups, and organisations to create awareness about being a Lary person too. We are Larykins raising our voices.
I am honoured to be a Community Ambassador for Beyond Five in Victoria. The challenge for 2020 and beyond, is to assist everyone living with head and neck cancer, whether they’re a Lary or not. We need to create awareness and raise the profile of these insidious rare diseases of Head and Neck cancers.
I live, love, and enjoy life as a Larykin – we travel, we socialise and we enjoy life together. Life is good – cancer free!!!!!
And I have been back to Bathurst and other race meetings for weekends with all my mates as just one of the boys and no special care or treatment for me.
Every day is a great day for me living as a Larykin !!!!