In April 2024 at 45 years old I was diagnosed with Transglotittic SCC – stage 4 throat cancer.
I required a Trachostomy (tube from outside your throat directly into you airway) and RIG feeding tube (tube from outside your stomach directly into your stomach) as my airway had nearly been completely closed off by the tumour and I was aspirating food and water into my lungs.
The treatment options proposed to me at the MDM were:
Radiotherapy with 20% at 5 year survival rate
OR
Major life changing/body altering surgery and radiotherapy with a 50% survival rate at 5 years.
These were/are not the best “odds” but giving up without a fight was not an option in my mind.
On the 9th of July 2024 I had my treatment consisting of and extended Laryngectomy (voice box removal) with base of tounge resection (tumor carefully carved/detached from of tounge) bilateral neck dissection (lymphnode removal both sides of my neck) and left hemithyroidectomy (removal of half my thyroid)
After recovering from surgery I went on to have 30 sessions of radiotherapy ending at the start of October 2024. (Unfortunately the radiotherapy destroyed my remaining thryriod function)
I was meant to have a total Glossectomy instead of a tounge resection but thanks to the confidence, skill and experience of my surgeon, they were able to save my tounge which has allowed me, what I’m going to refer to as “the luxury” of eating almost normally and being able to “voice” with the assistance of a voice prothesis often referred to as a TEP valve.
A Larryngectomy removes your voice box and recconstructs your throat and builds a wall separating it from your airway so your airway is brought to the front of the throat/neck to breathe through as you can see in my profile picture and your throat effectively becomes a slide straight to your stomach as we lose the normal swallowing mechanisms due to the reconstruction.
Using the HME (The button looking thing you can see on my throat) I push it which allows me to occude the air from my lungs which pushes it through the one way valve/hole which was inserted in a puncture of the new “wall” seperating my throat and airway, then air then vibrates up through my throat to my mouth and I use the vibrated air by shaping my mouth and tounge to form words.
Due to having no voice box, I no longer have any tone or inflection in my voice and can only speak in loud a whisper but I still think its pretty amazing despite the odd stares I often receive from strangers.
I was able to start eating soft foods again a few weeks after my Larryngectomy and passing what they refer to as a swallow test (making sure the reconstruction is unobstructed and not leaking) then started voicing about 4 weeks afterwards once the swelling in my throat had gone done. I manged eat orally (just) throughout my radiotherapy treatments. I was allowed to remove my RIG feeding tube after that.
At my 1 year CT scan and assessment last week: I am currently NED (no evidence of disease) here’s hoping that continues
Above is a very factual version of events and in reality there were many, many challenges, set backs and adversity I’ve had to overcome to be where I am today and some that will continue to challenge me on a daily basis permanently.
What I recommend is to live life with genuine gratitude.
Our journeys can be so hard and at times, it takes a lot from our physical bodies and emotional wellbeing. However we don’t all get a second chance or extra time so look after your mind and body to the best of your ability, do things that that bring you happiness. Love your life and those in it
Attached are a photo and video of me recently – I’ve just started up at the gym for the first time in my life. I was active and relatively strong before being diagnosed with cancer. My body has now recovered enough and regained adequate movement to focus on getting my strength and stamina back and improving my heart and lung health.
Ive gone from (after surgery) not being able to turn my head, dress myself or raise my arms above my shoulders or even be able to manage my own saliva or mucus without suction or a tissue in my hand 24/7 to riding my horse again and this. These are some of my small victories and goals.
WE CAN DO THIS FELLOW WARRIORS!!