A grandad who had "excruciating back pain" has been diagnosed with an incurable condition.
Simon Hulme, from Southport, knew something was wrong when he started experiencing agonising back pain out of the blue in June 2020. But as a headteacher coming towards the end of term, he put it down to needing rest.
While his blood tests came back clear, Simon's back pain was getting worse, and large bruises started to appear on his body. One day in July he became "confused" and was rushed to A&E.
READ MORE: Dad 'took charge' of family cash to feed £50k addiction
Tests showed he had a particularly aggressive type of non-secretory myeloma - a rare type of cancer of the plasma cells - and by the time he was diagnosed, one of his vertebrae had collapsed, causing him to shrink by three inches. He left the hospital needing to learn to walk again and immediately started rounds of chemotherapy, none of which have been successful.
Now, Simon's only chance to get more time to spend with his loved ones is a clinical trail, but due to the type of cancer he has, he says he is not eligible for any.
The grandfather-of-two told the ECHO: "I'm on my last line of treatment and at that point, you start looking at clinical trials but I was astonished to find out that with my type of cancer, I'm not eligible to access any trials.
"It's hardly fair, because of these rules I'm being denied something which could give me another year of life and that's what I want to fight for. It almost feels like an injustice, if you're not feeling well, you shouldn't have to fight for your life."
The 58-year-old stepped down from his role as headteacher of St Michael's Church of England High School in Crosby. He will have a scan in September to find out if this round of treatment is holding the cancer at bay but his options are "infinitely reduced."
He added: "Numerous hospitals across the country are trialling different drugs but I can't access it because of the type of cancer I have. Mine is an unusual journey and I'm trying to raise awareness because there will be others out there. Others may be older and sicker and accept it for what it is, but I'm not prepared to accept it."
He said: "I already have this rare type of cancer and now I find out there’s soon to be no more treatment or possibilities for me. It’s very distressing. If the line of treatment I’m on now doesn’t work, or even if it does work, it will run out of use in a year and there will be nothing left. A clinical trial might just mean six more months or a year but if you’ve got children or grandchildren it matters."
Around 5,800 people are diagnosed with the incurable blood cancer myeloma each year in the UK. Non-secretory patients like Simon make up around 2% of all cases, this type of cancer cannot be picked up or measured by a blood test.
Instead, Simon needs to undergo costly scans and bone marrow biopsies to keep track of the disease and monitor his response to drugs. As it stands, though, Simon said clinical trials for myeloma patients measure the return of the disease through regular blood tests, meaning he is not eligible for them.
Simon, from Ainsdale, said: "Being diagnosed with myeloma was a shock, but to be honest, when they said it was non-secretory, I didn’t think that it was going to be much of an issue. I didn’t understand the consequences. I didn’t think I would need a trial for many years."
Simon hopes that sharing his story will lead to much-needed change and fairer access to experimental drugs and treatments for future patients. He also hopes to finally be offered access to a trial before it’s too late.
He went on to say: "Obviously I’m fighting for myself but there will be people out there who will have no doubt died after being refused trials. There’s a bigger picture here and people in the future may find themselves in the same position as me.
"We’re not even talking about a cure: certain groups of myeloma patients aren’t getting access to treatments that could keep them alive. I’m trying to raise awareness so that someone might step forward and do something before it’s too late."
For more information about myeloma or to get in touch with Myeloma UK go to www.myeloma.org.uk. Myeloma UK runs an Infoline on 0800 980 3332.
Myeloma
On average 16 people are diagnosed with myeloma every day in the UK and despite being the third most common type of blood cancer, myeloma is especially difficult to detect as symptoms, chief among them pain, easily broken bones, fatigue and recurring infection, are often linked to general ageing or minor conditions
While it is incurable, myeloma is treatable in the majority of cases. More than 3,000 people die from myeloma every year and half of all myeloma patients will survive their disease for five years or more. Red flag symptoms include:
- Persistent or unexplained pain for more than 4–6 weeks, particularly in the back or ribs
- Spontaneous fractures, including osteoporotic vertebral fractures
- Hypercalcaemia (high calcium levels in the blood)
- Reduction in kidney function
- Recurrent or persistent infections
- Unexplained anaemia
- Nosebleeds or unexplained bleeding
- Unexplained breathlessness
- Feeling generally unwell – fatigue, weight loss, suspicion of underlying cancer
- Unexplained peripheral neuropathy, that is damage to the nerves that make up the peripheral nervous system. In myeloma the nerves that are most commonly affected are those of the hands and feet
READ NEXT:
Furious Brits abroad forced to pay €350 for four drinks
Desperate Manchester Airport passengers spotted crawling through baggage hatch
Emmerdale Anthony Quinlan's transformation and romance with Corrie star
Coleen Rooney celebrates her 'Wagatha' win in the perfect way
Spain clarifies rule as Brits told they have to spend £85 a day
