My name is Jon, or Jono. I am a 57‑year‑old builder that runs a building company as well as a building consultancy company dealing with health and safety.
I have a very active family, with my wife Nicky, dog Fletcher, 4 children and 11 grandchildren.
My story starts on 14th Nov 2022 when I was called by a nurse from my surgery for a chat. I had a hoarse voice for some time, but my GP had put it down to steroid inhalers I used for COPD. She asked about the continued hoarse voice that developed over a year ago and said she would get me an urgent ENT appointment. I honestly thought it was an infection that would not go away.
On 16th Nov we were sitting in a waiting room waiting to see Mr Arun Takhar. Little did I know we would become very well acquainted in time. We were called into the office, had a quick chat, and then he looked with a scope that went up my nose and into my throat. We sat down and he said, “Is there anything you're worried about?” “No,” said I. “I think it’s a sore throat caused by infection long‑term making me sound hoarse.” He looked at me and said, “I’m afraid it is a lot more serious than that. You have cancer of the voice box.”
In that moment my life changed forever. He said we need a biopsy to determine what type and how advanced.
So a biopsy was booked, and plenty of scans. After an operation to take the biopsy, stage 3 cancer of the voice box was diagnosed, with it covering 40% of my airway. Now just wait a couple of weeks or so to have the final PET scan to get everything in order to pinpoint the process. Once aim is good, we book 30 weeks radiotherapy with an additional week to aim a trial at me. One chemo at the start, one chemo at week 5. So OK, we can do this. Many people do, so can I.
So, PET scans booked and once done we were called in.
The oncologist sat down and said, “Right Jon, things have changed. The cancer has grown through the thyroid and that now means one thing. Total laryngectomy.”
I immediately swore and said, “No, not for me.”
“Well, the only option open is chemo and radiotherapy and hope, though you, in our opinion, will more than likely be dead by end of June if you do not go ahead with surgery. You have 3 days to decide.”
In those 3 days it was decided that the option was TL — total laryngectomy — and nothing else, so off I went. We met again and it was decided that 9th Jan was the biggest op of my life, booked for 9 hours. Christmas was different. Very different this year indeed.
9am on the 9th arrived and down I went. I said goodnight to one of the nicest surgeons ever, who we had grown to love a lot — Arun Takhar. I woke in ICU with COVID of all things and spent the next 3 nights locked in a room on antiviral medication with nurse Kate, who made life palatable. Soon moved to the ward to spend the next 21 days learning to breathe and eat and speak again. I remember thinking to myself there was no way I will spend 21 days here. I didn’t — I was out of there within 14.
Back home to rest before chemo and radiotherapy started. Got through that and I sit here on 9th April writing this. I speak, breathe, sneeze, cough — pretty much everything — through a hole in my neck.
I was thinking about what I would advise others if I had the opportunity. There is only one person you should see if there are changes to your body: not your mate down the pub or at the wine bar or the girls or guys from work, but your GP. I left it so long — far too long. If there is a change to your body, get it seen.
My whole life has changed so, so very much and tbh it is not nice. Not a nice way of living. I use the nebuliser at the moment several times a day just so I can breathe. Mine was a husky voice but signs vary.
Thank you for reading. My next fight is going to be my mental health...
