I couldn’t chew properly then my doctor said my life was at risk

It was lockdown, November 2020, and I’d treated myself to one of the only things that still brought me a bit of joy: A fancy dinner. 

After getting Covid and going through a break-up I’d been struggling with a lack of appetite for months, so I welcomed my renewed desire to eat and had picked up a boil-in-the-bag moules marinière. 

Ever since I’d been working from home I’d lived on soft foods like soups, couscous and hummus and I’d noticed that sometimes my face would get stiff when I tried to chew or swallow, but I’d always brushed it off.

As I worked a mussel around my mouth that November evening, however, I suddenly felt my throat constrict and my mouth seize up.

I couldn’t swallow.

Snorting and spluttering, I grabbed a napkin as salty, creamy sauce dripped out of my nose, stinging like hell. I was confused, in pain and alarm bells started to ring.

That uneaten bowl of mussels was the last straw and I made an appointment to see a doctor. 

My GP referred me to an Ears, Nose and Throat specialist (ENT), but an initial consultation and blood tests couldn’t find anything wrong.

I pushed back as I’d noticed my mystery symptoms would come and go and often worsen at night. By the end of some days my face felt so tight I’d be slurring my words and I’d wake up feeling better, able to manage soft foods again. 

However, as these appointments were often in the morning I don’t think doctors took me seriously. They put my symptoms down to stress, suggesting I take a holiday that Christmas to relax.

That New Year I travelled to Dubai, which was allowed under the government’s traffic light system at the time, to see a friend. And then I caught Covid, which only made my symptoms worse. 

I video-called my consultant on January 2, by which time I was slurring my words and my eyelids had drooped – I thought I was having a stroke. 

‘I know exactly what this is,’ she told me. ‘Your life is at risk – you need to come home now.’ 

She then referred me to a neurologist who diagnosed a rare autoimmune condition called myasthenia gravis (MG) – a condition that causes the body to attack itself and had resulted in muscle weakness in my face, throat and chest.

Worst case scenario: My diaphragm might stop working and I wouldn’t be able to breathe. 

Immediately the neurologist prescribed medication called Pyridostigmine, which worked like magic. I went from not being able to move my mouth to speak, to eating a KFC an hour later. 

Problem solved – or so I thought. 

As MG is often triggered by issues with the thymus – a gland in the chest that’s an important part of the lymphatic system, making special white blood cells called T-cells to help the immune system fight infection – the specialist wanted to investigate further.

The results of my CT scan were devastating.  

‘You have a tumour called a thymoma in your thymus,’ my consultant explained, pointing to an area beside my heart on the scan. 

At first, I couldn’t even process what I was being told: The tumour on my thymus was 11.5cm – the size of an iPhone! – and there’d be no way of telling whether it had spread or wrapped itself around my organs until they took it out. It took a couple of hours to really sink in, and when it did, I felt utterly terrified.

A week later, at the end of March, I underwent a six-hour operation at St George’s Hospital in London. When I woke up in recovery, the first thing I groggily asked was: ‘Did you get it?’ 

‘We got all of it,’ my consultant reassured me, but said it had to be sent to a lab to find out if it had metastasized. 

I spent four days in hospital before I was discharged and then all I could do was wait. That was by far the worst part – I couldn’t settle physically or mentally. 

A fortnight later, I was well enough to take a short walk in my local park when my phone buzzed. ‘The cancer was stage 2. We got it all – no further treatment needed,’ my consultant told me.  

I was in bits, crying tears of relief right there in the park, so grateful not to need radiotherapy or chemotherapy. 

Unfortunately, because my autoimmune condition had already been triggered, I still have to live with MG and take medication, including Pyridostigmine and steroids, daily to manage my symptoms and stop it from flaring.

And while that’s not ideal, I’m embracing life. I never take a single day for granted, I’m so much closer to my family and I’ve moved from London back to my hometown in Devon and married my lovely husband Nick.

I’ve also accessed support from Myaware – a charity that helps people with MG, including their online groups and forum – which makes me feel like I’m not alone, and in October 2021 I ran the London Marathon to raise money for Shine Cancer Support, a charity that supports young adult patients. 

There are some cancers that are really hard to detect and thymoma is one of them, but my body was telling me loud and clear that something was wrong. 

If you have unusual symptoms, always listen and see a doctor. 

As told to Jade Beecroft

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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