In February 2023, less than a year after turning 40 and getting married, I began to notice something wasn’t quite right. While eating, my mouth wouldn’t close properly. At first, I brushed it off, but it gradually worsened, particularly after meals.

I visited my GP and was told it was likely stress, despite not feeling stressed. As time went on, my symptoms progressed. My speech became increasingly slurred as the day wore on, and after four visits to A&E, I was still no closer to answers. Each time, I was reassured it was stress-related or that I might simply be doing too much.

During this time, I had come across myasthenia gravis while researching my symptoms. I suggested it to a doctor but was told it was unlikely, as I didn’t have drooping eyelids (ptosis).

Then, around the beginning of May 2023, everything changed. After feeling unwell with what I thought was flu or COVID, I went to bed early. When I woke, I couldn’t speak or swallow. My hands had lost strength, and my breathing was severely affected.

My wife arranged a private appointment with a neurologist. Within two minutes of seeing me, he said, “Mr Clarke, you are a very poorly man, and I need to admit you to hospital as you are in a myasthenia gravis crisis.”

In that moment, my world turned upside down.

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Diagnosis and Treatment

I was admitted to Salford Royal Hospital, where I spent two days in intensive care before being transferred to a ward. It was there that I began to understand myasthenia gravis and its causes.

A scan of my thymus gland revealed a large mass. Further tests, including a biopsy, confirmed a diagnosis of Thymoma — specifically Type B3, Stage 3. The tumour had begun invading my lungs and the wall of my heart and had wrapped itself around two major arteries.

I was told the treatment plan would involve chemotherapy, surgery, and possibly radiotherapy.

Chemotherapy was incredibly tough. I was treated with Cisplatin and Doxorubicin (often referred to as “the Red Devil”). After four cycles, the tumour had shrunk slightly — just enough to make surgery possible.

In September 2023, I underwent surgery in the hope of a full resection. When I woke, I was told that 80% of the tumour had been removed, but the remaining 20% was too risky due to its involvement with major arteries.

Radiotherapy followed, with 30 rounds aimed at shrinking what remained. Unfortunately, the tumour grew slightly instead.

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Facing the Unthinkable

I was then given devastating news. There were limited options left — possibly two remaining cycles of chemotherapy — but beyond that, treatment would focus on managing my life expectancy. I was told I might have around five years.

With a young family, this was incredibly difficult to process. I struggled deeply and experienced a period of depression. But despite everything, I was determined not to give up.

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A Second Chance

Through my own research, I found a surgeon, who reviewed my case and believed he could help. The surgery would be high-risk and classed as “radical,” meaning plans could change once the operation began.

On 14th August 2024, at Guy’s and St Thomas’ Hospital, I underwent surgery.

I was placed on a bypass machine so my heart could be stopped while they removed the tumour from around my arteries. Part of my lung was removed, and my heart wall was shaved.

Against the odds, the surgery was a success. The tumour was fully removed.

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Recovery and Moving Forward

Recovery was far from easy. I spent almost five months in hospital in London. I developed a deep wound infection that led to sepsis, suffered a major bleed from my femoral artery, and experienced atrial fibrillation, requiring my heart to be shocked back into rhythm.

Being so far from home also took its toll on my mental health. I missed my wife, children, and family deeply.

But looking back now, those challenges feel small compared to what I gained — a second chance at life.

Today, I am getting stronger and fitter every day. I don’t take anything for granted. I remain on long-term medication, likely for life, but that feels like a small price to pay.

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Supporting Others

If my experience can help even one person, then sharing it is worth it.

I am more than happy to speak with anyone who may need advice, reassurance, or simply someone who understands. Please feel free to contact the team at myaware, and they can put us in touch.

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