My story starts in May/June 2022, whilst working as a forklift operator on a building site, when my voice was slowly tapering off by the end of the day and it was getting really hard to speak . Like a typical man, I just went through packets of strepsils hoping it would
improve after a few days, but slowly the days turned into weeks and with constant nagging from the wife, I finally got an appointment to see a doctor. Within 5 minutes of being in the room she said she was booking me in for an urgent ENT appointment.
Within a week I was at my local hospital ready for the “scope up the nose”, after a few minutes a couple of other people made their way into the room to look at the pictures on the screen, they were all ummmmm and aarring so I took a picture of what they were looking at and the sight just filled me with, 'god that does not look good at all'.
I left ENT with an appointment to come back in a week for them to do biopsies, I never told anyone in my family what I’d seen on the screen and tried to brush it off as nothing serious when I had a good idea of what I'd seen. A week later, I was in for them to do a biopsy and was informed that because of the “bulk” in my airway I may wake up with a tracheostomy. Well, I woke up and no tracky, just a bloody sore throat and the news that the doctor had debulked the mass to help with my breathing and swallowing and they had got all the bits needed which would be sent for testing.
2 weeks later I had an appointment at Townlands Hospital, Henley to see a specialist. Before I even left home, I had a good idea of what was going to be said but kept the thoughts to myself. The wife and I walked into the room, there was someone sat in a suit, a nurse and a MacMillan nurse present so before anyone said anything, I knew what was coming. I listened in a semi-daze as he (Mr Silva, who was going to be my saviour and surgeon) outlined the biopsy results and the possible treatment. All I can really remember is they wanted us to go to the Churchill Hospital to meet a surgical team in 2 weeks time. As you can imagine, my wife was devastated and we barely spoke on the way home except to decide not to tell the kids for a couple of days until we had gotten it straight in our own minds. Well, you can imagine how the kids took the news; it was not good, as the big C usually means bad news.
When we eventually got to Oxfords Churchill Hospital and spoke to Mr Silva who outlined what he was proposing to do and in walked Mr Potter - "I’m the plastic surgeon who’s going to be working with Mr Silva and I’d like to do a fairly new procedure and take a flap from inside your cheek to use inside your neck to make it easier as it will be spun around still connected to it’s own blood supply and be easier than taking it from a donor site." I just said listen mate, you do what you feel is the best way to go about it. I looked at the wife and said “in for a penny, in for a pound”. Let’s just do it.
I had a few more appointments in the coming weeks until the surgery day arrived on the 9th August 2022. I said goodbye to my wife early in the morning and went with my daughter on the long, quiet ride to Oxford while smoking my head off all the way to the hospital car park.
Entering the hospital felt strange as I'd only ever had my tonsils out as a kid, so never had a stay longer than 1 day. It was early morning and the place was buzzing with admissions. I was told to change into the gown and wait as they were confirming they had a bed for me in the ICU for after the operation. Someone in blue garb came up and said I’m the anaesthetist. Can you follow me to theatre, I said goodbye to my daughter, told her I’d see her on the other side and slowly walked through some corridors, not really hearing what he was saying all the way to the room. Watched him put the cannula in my arm and gone.
I woke up pushing someone’s hands away from my mouth, it was a wet sponge to moisten my lips and I remember her saying “welcome back” but everything was still black and I couldn’t see anything until some time later and I could hear my grandson and I was on a bed being pushed along a walkway to what I now know as Bleinham Ward and a flurry of nurses descended on me hooking up tubes and drips and eventually I could focus on my wife and daughters faces and their looks said all I needed to know because if I looked how I felt I could understand their reaction.
When I eventually did get a mirror and saw my reflection, black rings around my eyes and lots of bruising on my face and it looked like they had cut my head off and stitched it back on with all the stitches around my neck and tubes in either side and one up my nose too. Slowly over the next week, things did get better really quickly and I was approaching my first swallow test, I failed that which was a blow to going home but after 10 days, I passed and was allowed home . I had an SLT come and show me how to speak for 10 minutes and then I was home. Silence, a real deafening silence, it was strange being at home, as what happens next? My daughters found me a Lary site in America, so I regularly watched people giving advice and sharing tips but there was nothing in the UK like this.
I happened to see an English person on there who little did I know was going to become a big player in my life as a Lary and best friend. His name was Jon Organ and he’d just had his surgery. We started talking about our situation and he said I’m going to start a
group in the UK. Would you be interested in joining me, I said ok let’s do it. The first day it went on Facebook, we laughed and said hope we get 100 members and slowly people joined and we were so happy to be helping others. Here's me, never sent an email in 63
years running a Facebook page.
Things were going well for me until June 2025 when my no.1 supporter became really ill, I spent a week sleeping in a hospital chair, willing my wife to get better, but it was not to be and she passed away on the 3rd of July. Bang, my whole family life was in turmoil once again, but in a totally different way. 34 years of marriage and she was gone. It was a hard few weeks to come to terms with and I’d had a short period of time away from the group. Still, slowly, I got back into the Facebook group, as the wife always said you are doing a brilliant job helping others and the group was going from strength to strength. We talked about the group becoming a charity and in early 2026 we achieved charity status with the help of some fantastic people who could see what we were doing and believed in us as a group.
Today I look at the group and see the challenges we have overcome and the comments we get both privately and on the group from strangers we have helped and feel proud and grateful to have been able to put a dream into reality and change people's lives for the better.
I want to thank my kids, Mercedes, Ashlie and Sammie-Jo, all our trustees, ambassadors and everyone who has helped get us to where we are today but especially Jon Organ, who, without knowing it, kept me going and had the confidence in me to walk beside him to get us to bigger and better things as a group. We now have over 1000 members in our Facebook group and I am proud to stand with Jon as joint CEO of the charity - Life After Lary.
