Amy had the privilege of meeting one our moshers, the amazing Lilly! Here is her story…
Hi!! I’m Lilly, I’m 34 years old, I live in Ulverston and I want to share my story with you!
In June 2024 I was diagnosed with a rare endocrine cancer call paraganglioma.
For two or three years I was having symptoms which included sickness and diarrhoea daily, heart palpitations, severe fatigue and weakness and struggling to swallow food. Several times I went to hospital and was told that it was anxiety! I was even told by my doctor after not receiving appointments for tests that I had “fallen through the cracks” and it was that test I was waiting for that told us I have a partially paralysed vocal cord which is why I was struggling to swallow!
I then went for the scan which showed one big mass in my neck! So I went for more in depth scans, which showed it was actually 2 separate smaller masses!
I was called into Furness General to be told I had paraganglioma tumors. I was told that this was nothing to worry about and they were benign! I was then referred to Manchester Royal and Christies where I was told that I definitely should not have been told this information! They don’t use malignant or benign with these tumours, they are all classed as cancer and they also wouldn’t be able to test it until they where resected as they were too dangerous to biopsy!
These tumours can secrete metanephrines, adrenaline, dopamine and noradrenaline, as mine were. This was the cause of all my symptoms. My tumours where located on my vagal nerve in a more tricky location in my neck, one of which was “creeping” into my brain.
My options were “watch and wait”, radiation or surgery!
We couldn’t watch and wait as they were making me very poorly. and as radiation would have only shrank the tumours, we started planning the surgery!
My surgery was the 7th of July 2025! It was a 12 hour complicated procedure which was successful and the tumors where completely resected! But that came with a price…
The surgery caused a lot of nerve damage, resulting in the left side of my face being paralysed. Most movement is back now but still not 100% although we’re hoping that makes a full recovery.
They had to remove the bones in my left ear which means I’m now half deaf and the nerve damage in my throat and vocal cord means I’m no longer able to eat food which is extremely hard. I have a feeding tube in my belly which comes with its own issues entirely!
Now, eight months on, my symptoms have gone and it’s so nice to not wake up being sick. It’s lush having energy again!
Recovery is hard but I’m hoping the worst of it;s over now and the only way is up! I will be scanned regularly to check for reoccurrence. Fingers crossed I stay tumor free as i’m not sure I have it in me to do it all again!
Anyway, that’s my story. I’ve probably left stuff out and forgotten things but if this helps even one person in their own journey I’ll be a happy woman!
Sending healing vibes to anyone that need them!
Thank you Lilly for sharing your incredible story! Stay strong and mosh on!
