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’”.
CASE STUDY: 'Covid was causing so much chaos and anxiety - no one knew what we were dealing with'
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.”
READ MORE: Cancer conundrum: Why are deaths lower now than before the pandemic?
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.
READ MORE: Why scientists think we are at a 'historic' turning point in the fight against Alzheimer's
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.”
Why are you making commenting on The Herald only available to subscribers?
It should have been a safe space for informed debate, somewhere for readers to discuss issues around the biggest stories of the day, but all too often the below the line comments on most websites have become bogged down by off-topic discussions and abuse.
heraldscotland.com is tackling this problem by allowing only subscribers to comment.
We are doing this to improve the experience for our loyal readers and we believe it will reduce the ability of trolls and troublemakers, who occasionally find their way onto our site, to abuse our journalists and readers. We also hope it will help the comments section fulfil its promise as a part of Scotland's conversation with itself.
We are lucky at The Herald. We are read by an informed, educated readership who can add their knowledge and insights to our stories.
That is invaluable.
We are making the subscriber-only change to support our valued readers, who tell us they don't want the site cluttered up with irrelevant comments, untruths and abuse.
In the past, the journalist’s job was to collect and distribute information to the audience. Technology means that readers can shape a discussion. We look forward to hearing from you on heraldscotland.com
Comments & Moderation
Readers’ comments: You are personally liable for the content of any comments you upload to this website, so please act responsibly. We do not pre-moderate or monitor readers’ comments appearing on our websites, but we do post-moderate in response to complaints we receive or otherwise when a potential problem comes to our attention. You can make a complaint by using the ‘report this post’ link . We may then apply our discretion under the user terms to amend or delete comments.
Post moderation is undertaken full-time 9am-6pm on weekdays, and on a part-time basis outwith those hours.
Read the rules hereLast Updated:
Report this comment Cancel