Worthing man joins race to find people living with incurable blood cancer

A Worthing man whose incurable blood cancer was caught after a nosebleed has joined the race to find the 851 people living with undiagnosed myeloma in the UK.

Ross Lowndes, from Findon Valley, was diagnosed with myeloma, an incurable which kills 3,000 people in the UK each year, at the start of 2021.

By the time his cancer was caught, he had holes, known as lesions, in his hip and at the bottom of his spine. He was also so anaemic, he needed a blood transfusion. Thankfully he was told his cancer had been caught early.

As Myeloma Awareness Week (June 19th-25th) gets underway, Ross is teaming up with charity Myeloma UK to #FIND THE 851 patients currently living with undiagnosed myeloma in the UK.

As part of the campaign, the 64-year-old is urging the public to learn the tell-tale symptoms, rule themselves out and spread the word about myeloma. “It was the nosebleed that did it for me,” he said. “If I hadn’t mentioned it to the GP, I would have carried on and eventually maybe it would have got worse.”

Ross didn’t think much of it when he began experiencing niggling pain in his right hip. But despite seeing a chiropractor, his symptoms got progressively worse. On his chiropractor’s advice he booked an appointment with his GP.

The GP didn’t seem overly worried at first – that is until Ross mentioned in passing he’d recently had a nosebleed. She immediately ordered a blood test. It revealed Ross was severely anaemic, one of the tell-tale signs of myeloma.

He added: “I had this ache in my hip for a good year but I didn’t think any more of it. It got slightly worse and I started limping a bit but I carried on working. The chiropractor couldn’t understand why it wasn’t getting any better so they said I should see a doctor.

“I was at the doctor and I wasn’t even going to mention the nosebleed but, as I was leaving, I just thought I’d mention it because I’d never had one before.

“I remember when I went to see the consultant, they couldn’t believe how I wasn’t out of breath or falling over. They said, ‘You should have been down in the decks ages ago’. But they told me it was caught it early.”

Myeloma diagnoses dipped during the pandemic

Around 5,900 people are diagnosed with myeloma in the UK each year.

But during the pandemic, myeloma saw a drop in diagnoses, with confirmed cases down by 851 compared to pre-COVID expectations.

Despite being the third most common type of blood cancer, myeloma is already frequently missed, as its symptoms, including back pain, easily broken bones, fatigue and recurring infection, are vague and often linked to general ageing or minor conditions.

1 in 4 people wait more than 10 months for a diagnosis. These are some of the longest delays out of any cancer in the UK. Yet, a simple blood test can, in most cases, pick up signs of myeloma.

While it is incurable, myeloma is treatable in the majority of cases. Treatment is aimed at controlling the disease, relieving the complications and symptoms it causes, and extending and improving patients’ quality of life.

Myeloma UK Chief Executive Sophie Castell said: “We know that during the pandemic fewer people were diagnosed with myeloma than expected. This means that around 851 people could be unaware that they are living with blood cancer. The common symptoms are back pain, fatigue, recurring infections or easily broken bones.

“The most important thing people can do is rule themselves out by checking their symptoms and, if anything isn’t right, go see their GP. It might take more than one appointment for your doctor to put the pieces of the puzzle together. So please keep pushing or ask for a second opinion. Together we’ll find the missing 851.”

Treatment and support of the blood cancer patient

Finding out he had incurable cancer was a shock, Ross recalled. “When I started treatment I fell apart,” said Ross, who used to work in the TV and media industry, mainly on the European Golf Tour. “I was always fit and healthy. I had never been ill or had an infection and I never thought when they did the blood tests it would be what I’ve got.

“For a while I couldn’t walk, I couldn’t get up. But I pulled myself together and since then I just get on with it. Without my family and my wife’s support especially I would have fallen apart completely.”

He has now gone through six rounds of chemotherapy. He also underwent a stem cell transplant in London in March 2022.

He credits staff at Worthing Hospital and University College London Hospital Macmillan Cancer Centre for supporting him through treatment and giving him much-needed comfort and reassurance.

“Both hospitals were absolutely brilliant,” said the 64-year-old. “I can’t fault them. I had my blood transfusion and I had never been in a hospital before, it was very new to me. They could see I was nervous, and they were so good. They comforted me and made sure I felt welcome and kept coming round and making sure I was alright. When they did my biopsy, I was petrified but the nurse held my hand. Everyone there is brilliant. They’ve always been caring. They’ve been there for me.”

“I’m in remission but how long that will be, I don’t know,” added Ross, who has two stepchildren. “It’s not curable but there are so many more treatments and trials now. Within 10 years we could be close to stopping it from coming back. I just want to get on with it and carry on living my life as normal.”

Rule yourself out and Help Find the 851 by visiting www.myeloma.org.uk/Find-The-851 (from June 19 onwards).

Myeloma UK runs an Infoline on 0800 980 3332.