Hi All
I am a 51 year old male from Wales. I have rare blood, a rare brain disorder and now I may have a rare cancer! What are the chances, maybe I should buy a lottery ticket.
I'm in that strange place where I am not 100% sure of anything anymore. Stuck in a Neverland of an uncertain future.
So how did I get here? Roll back to May 18th 2020, walking the dogs i had a massive pain in my neck that stopped me in my tracks. I remember the date because it was my brothers Birthday.
I checked my throat when I got home and noticed a swollen tonsil with white patches. I assumed it was either tonsillitis or canker stones. Heading more towards stones as I had no temperature.
After 3 weeks I decided to contact the Dr. It was a locum who, due to covid, saw me in the carpark. I felt a bit stupid as she said she couldn't see anything and maybe I had a touch of thrush. She sent me on my way with scripts for antibiotics and a mouthwash.
After my meds had finished nothing had changed, I still had a sore throat and I could still see a swollen tonsil and white patches. But due to covid and feeling I had wasted the docs time I decided it must just be in my head.
Move forward to the end of November 2020 and my now really uncomfortable throat is joined by a big swollen lymph node in my neck, visible to the eye. So my wife encouraged me to go back to the doc.
I am called straight into the doc for an urgent appointment. He has a look, tells me nothing, and books me for an urgent ENT appointment. I see ENT 2 weeks to the day of seeing my Dr. ENT checks the outside of my neck, sticks a camera in my mouth and via my nostril, takes some photos. Says nothing books me for a brain, neck and chest ct scan. Which I had on Friday the 18th December 2020.
On the following Tuesday (22nd December 2020) I have a call from the hospital to book me in for a neck ultrasound and neck mri. Both are due on 5th January 2021.
I said earlier that I have a rare brain disorder. It causes a lot of pain, for which I am on painkillers daily. These painkillers were not touching the ever increasing pain in my ear, shoulder and face. So I called the surgery for a short course of something stronger.
The Dr called back very quickly, I told her about the pain and that I was in the dark as to what was going on. She was lovely and firstly apologised for having to give me info over the phone. She said that they had found something and that it's pressing on a main nerve in my neck, hence the pain. She told me that they are moving quickly and that the ultrasound and MRI are to see the extent of spread. She did mention the 'C' word, but I do not know if she said it is or they suspect. She gave me a script for nerve pain relief.
So each day is a roller coaster of pain and emotion. Can't really talk to anyone about it as you just don't tell anyone until you know. My wife knows but I don't want to burden her with worries about what might not be.
