Jon's Story

my name is Jon or Jono I am 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 horse voice for some time but my GP had put it down to steroid inhalers I used for COPD.  She asked re the continued horse 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.
16th Nov we was sitting in a waiting room waiting to see Mr Arun Takar little did I know we would become very well acquainted in time.
we was called into the office quick chat and then he looked with a scope that went up nose and into throat. we sat down and he said is there anything your worried about. no said I. think it's a sore throat caused by infection 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 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 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 book 30 weeks radiotherapy with an additional week to aim a trial at me. 1 chemo at start 1 chemo at week 5. so OK we can do this. many people do so can I.
so pet scans booked and once done we was called in.
oncologist sat down and said right Jon things have changed. the cancer has grown through 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. 9 am on 9th arrived and down I went said good night to one of the nicest surgeons ever who we had grow 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 anti viral medication with nurse Kate who mad life palatable. soon moved to the ward to spend next 21 days leaving to breath 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 breath sneeze cough pretty much everything through a hole in my neck.
I was thinking about would 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 GP. I left it so long far to 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 moment several times a day just so I can't breath.
mine was a husky voice but signs are varies. Thank you for reading. my next fight is going to be my mental health...