THE world was still in lockdown when IT consultant Luke Johnston-Smith began to feel unwell in June 2020. 

It began with a fatigue that was so bad the 40-year-old struggled to climb the stairs without getting out of breath.

Then one morning he woke up with the hearing in one ear “completely gone”. 

With GPs restricting face-to-face appointments, Johnson-Smith was given a series of telephone consultations with the practice nurse. 

Over the course of 10 weeks and five consultations, with prescriptions ranging from ear spray to anti-nausea medication, he was never examined in person or seen by a GP.

He said: “I never got the opportunity to sit in front of anybody. For a 40-year-old male to go completely deaf in one ear when all I do is work in IT - I’m not on a construction site - to me, I find that weird.

“We got to the 10 week mark and I just said to my husband ‘this is insane - this isn’t getting better, I’m totally deaf in my right ear, and we still don’t know what’s caused it’”. 

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The couple, who live in Dalkeith in Midlothian, paid £300 to see a private ENT specialist instead.

Nerve damage, caused by an untreated infection, had led to irreversible hearing loss.

Johnston-Smith was referred back to the NHS for an MRI but, while awaiting the results, began experiencing blurred spots in his vision. 

A high street optometrist discovered burst capillaries in his eye and referred him back to his GP for urgent blood tests. 

“To be fair, at that point I got straight into the GP that day and from there everything flowed really quickly,” said Johnston-Smith.  

“Diagnosis was the trickiest part. After that everything went like clockwork.”

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His bloods were sent to the Western General in Edinburgh for same-day analysis, and he was admitted to hospital within hours. 

Tests revealed haemoglobin levels of just 35, compared to the 140 expected in a healthy adult male, putting him a high risk of organ failure or a heart attack.

The underlying cause was myeloma, a form of blood cancer which ravages the immune system.

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Following seven blood transfusions, chemotherapy, and a successful stem cell transplant in September 2021, Johnston-Smith is in remission. 

Paraproteins - the biomarker for myeloma - are currently undetectable in his blood. 

“I was lucky. I would genuinely say there wasn’t one period of time in the 18 months after diagnosis where anything was delayed. 

“But it will be interesting to see where we are with cancer deaths a year from now.”