A Midlothian man was nearly deaf in one ear and had blurred vision after his incurable blood cancer was missed during the pandemic.
Luke Johnston-Smith, was finally diagnosed with the myeloma in September 2020 after months of experiencing baffling symptoms including hearing loss and blurry vision.
By the time his cancer was caught, he was so severely anaemic, doctors wondered how he was “standing upright” and his hearing was also permanently damaged, and he now wears a hearing aid.
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The now 42-year-old is urging the public to learn the tell-tale symptoms, rule themselves out and spread the word about myeloma.
Luke said: “When I was in the hospital, they said, ‘I don’t know how you're standing upright’,” said the IT consultant.
"My heart was beating way too fast and my immune system was compromised.
“If I can reach one person and get their myeloma caught early, mission accomplished. If something is not right, go to the doctor and keep going back if you're still not feeling well. That was my experience.
“I think it starts with talking about myeloma. Every family member or friend I’ve told about my diagnosis had no clue about myeloma and I want to do everything I can to change that.
“The fact that it’s difficult to diagnose – that needs to change too.
“Because of COVID it was difficult to get a GP appointment and I kept getting phone appointments with a nurse about my ear. It was in the middle of lockdown which made it so challenging, but I wish things had gone differently.
“It went on for eight weeks. In the end, when my vision started to get blurry, it was an optometrist who started the snowball effect of getting my diagnosis.”
It all started when Luke began feeling inexplicably exhausted in May 2020. Walking from his back door to the garden was a colossal effort. Soon he needed “to sit down for 15 minutes” after going up and down the stairs.
Then, one morning in July, he woke up to find the hearing in his right ear “was gone” so he contacted his GP and was given a phone appointment with a nurse.
Luke started feeling increasingly dizzy and, over the next six weeks, he had multiple phone appointments with the nurse and was prescribed ear spray and anti-nausea medication. But no one could pinpoint the cause of his hearing loss.
At his wits’ end Luke paid to see a private ENT specialist who told him he had an ear infection, which should have been treated with steroids immediately. As it was, the damage to his ear would be permanent.
Luke was referred back to the NHS for an MRI scan and things came to a head in September when he woke up one day with “a blurry spot” in his right eye.
He consulted an optometrist, who told him all the capillaries in his eye had burst. She sent him back to his GP to get an urgent blood test.
That same day Luke got a call from the Western Hospital in Edinburgh asking him to pack a bag and come in immediately.
He was swiftly diagnosed with myeloma.
“My brain was fuzzy all the time by that point,” he recalled.
“I couldn’t even walk very far – they had to get a porter to help me. I was in a haze. They said to go to the cancer assessment unit and I didn’t even put two and two together at that point. They did some blood tests which showed I was severely anaemic.”
He added: “It was so overwhelming. I can picture lying in the bed in hospital, having been told I have an incurable cancer. And it’s going to keep coming back. Nobody can prepare you for any of that.”
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He started treatment straightaway and received a stem cell transplant in September 2021 and has been in very good partial remission since. Thankfully, nearly three years on, he has recovered some of his hearing.
“The treatment has been as good as I could hope for,” he went on.
“I never say, ‘Why did this happen to me?’. I don’t want it to define me. If I can be the person that I needed back in September 2020 and help other people, that’s who I want to be.”
You can find out more about myeloma here.
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