Jon’s story, “I speak, breathe, sneeze, cough, pretty much everything through a hole in my neck”

My name is Jon Organ.  I’m a 57 year old builder that runs a building company in the south of England as well as a building consultancy company dealing with health and safety.

I am very much a family man. I married my wonderful wife Nicky 36 years ago and between us we have raised 4 kids, and now have 11 grandchildren.   Plus, not forgetting our beloved dog Fletcher.

My story starts on 14th November 2022 when I was called by a nurse from my surgery for a chat. I had had a hoarse voice for some time, but my doctor had put it down to steroid inhalers I used for Chronic obstructive pulmonary disease (COPD).  The nurse asked about the continued hoarse voice and I explained that it had developed over a year ago.  She said she would get me an urgent ENT referral.  I honestly thought it was just an infection that would not go away.

Two days later on the 16th of November we were sitting in a waiting room waiting to see Mr Arun Takhur.  Little did I know we would become very well acquainted in time.

We were called into his room for a quick chat and then he looked with a scope that went up nose and into my throat.   We sat down and asked if there was anything I was worried about?  I said no, that I just thought it was a sore throat caused by an infection in the long term making me sound horse.   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 told me that I needed a biopsy to determine what type and how advanced it was.

A biopsy was booked and plenty of scans.  After an operation to take the biopsy, stage 3 cancer of voice box was diagnosed with it covering 40%of airway.  Now just wait couple weeks or so to have final pet scan to get everything in order to pinpoint the process.  Once aim is good, we booked 30 weeks radiotherapy with an additional week to aim a trial at me. 1 chemo at start 1 chemo at week 5.  Okay, we can do this. many people do it, then so can I.

Once the pet scans were done, we were called in to speak with the oncologist.  He sat down and said, “Right Jon, things have changed.  The cancer has grown through the thyroid and that now means one thing.  A total Laryngectomy.   I immediately swore and said no not for me.   He told me the only option other option is chemotherapy and radiotherapy and hope!  But the opinion was that unless I had the surgery to remove my larynx I would more than likely be dead by end of June.   I had 3 days in which to decide.

In those 3 days I decided that the option for me was to have a total laryngectomy.  I went. we met again and it was decided that the 9th of January was the date for the biggest operation of my life was to be booked and it would take 9 hours.

Christmas was different. very different this year indeed. 9am on 9th of January arrived and down I went said good night to one of the nicest surgeons ever who we had grown to love a lot, Arun Takhur.

I woke up after the operation in ICU with COVID of all things and spent the next 3 nights locked in a room on anti-viral medication with nurse Kate who made life palatable.   Soon I was moved to the ward to spend next 21 days learning to breath, eat and speak again.  I remember thinking to myself there was no way I will spend 21 days here.  And I didn’t, I was out of there within 14 days, back home to rest before my chemotherapy and radiotherapy started.   I got through that and I as I sit here on 9th April writing this.   I speak breath, 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 1 person you should see if there are changes to your body. not your mate down the pub or at wine bar or the girls or guys from work but your doctor.  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 to be honest it’s not a nice way of living.  I nebuliser at the moment for 7 hours a day just so I can’t breathe.

Mine was a husky voice but tell tales signs varies. Thank you for reading. my next fight is going to be my mental health…

Jon

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