02 Feb 2023

Finding joy in family and pilates: Stephen’s emotional AML rollercoaster

Stephen spoke to Leukaemia UK to raise awareness of the signs and symptoms of leukaemia and the importance of getting diagnosed as early as possible.

Leukaemia UK’s ongoing research is looking into how to develop kinder and more effective treatments for patients like Stephen. For example, Dr Konstantinos Tzelepis’ recent research into inhibiting the action of a protein called METTL3, which is now starting clinical trials to see if it could become a vital new treatment for patients like Stephen with acute myeloid leukaemia (AML).

Here’s Stephen’s story…

“The diagnosis was traumatic not just for me but also for my wife and our children,” said Stephen Young. “We have been on an emotional rollercoaster ever since.”

Stephen, who lives in a village near Harrogate, Yorkshire, had been having unexplained symptoms for several weeks. These included nose bleeds, a rash on his face, mouth ulcers shortness of breath and fatigue. Repeated trips to the GP had failed to prompt the need for a blood test – the only way to diagnose leukaemia.

“After the initial shock and trauma of the diagnosis it was crystal clear to my wife, Eugenie, and I that I had been displaying classic leukaemia symptoms for several weeks but these had not been linked as being symptomatic of a bigger health issue,” said 73-year-old Company Chairman Stephen.

“I had been to my GP about my constantly bleeding nose and was given a nasal cream. When I went to my GP about my face rash, even though I said I thought something more was going on because I was short of breath, the GP insisted it was classic Rosacea and prescribed a cream and antibiotics. A week or so later I developed very large and painful mouth ulcers. The final straw came when on a beautiful June Sunday afternoon country walk with Eugenie I had real problems breathing and putting one foot in front of the other. In hindsight, perhaps we should have gone straight to A&E rather than going home. That evening I e-mailed my prostate cancer oncologist – I’d had a radical prostatectomy in 2011 – to ask if my current range of symptoms could have anything to do with the new hormone suppressant that I was being treated with every three months. He called me the very next day to say he thought there was another underlying cause and that he would write to my GP and ‘suggest’ they give me a full suite of blood tests.

“About a week later I received a text from my GP asking me to make a face-to-face appointment with one of the practice doctors. This is the point where I start to get angry about the delay in my diagnosis. When I called to make an appointment, I was told I could have an appointment in eight days’ time. I asked the receptionist if there no possibility of getting an earlier appointment. She answered: “Only if it’s a medical emergency – is it a medical emergency?”. I said I didn’t think I was qualified to answer that question – my oncologist has suggested I have some blood tests. She asked again – “Is it a medical emergency” and kept repeating it in response to anything I said until in frustration I said “I guess not.” So I ended up with an appointment at 10.00 am on 1 July. I now wish I had said it was.”

Stephen went to the GP appointment on 1 July and talked about the range of symptoms that affected him. The doctor carried out a series of blood tests and said someone would be in touch from the practice if there was an issue.

Stephen added: “As I was leaving the doctor asked if I would like to have chest x-ray. I thought it odd that the doctor put the onus on me to decide whether I had a chest x-ray or not, but I knew that my symptoms included difficulty breathing so I said yes.

“My daughter, Jody, took me straight to Harrogate Hospital and then back home where I promptly climbed into bed and told Eugenie that all I needed was a few days’ rest.

The x-ray subsequently highlighted a major infection in Stephen’s lungs and the blood tests set alarm bells ringing in the haematology department at Harrogate Hospital. However, Eugenie had already taken matters into her own hands by calling the paramedics and he was taken to Harrogate A&E by ambulance.

Stephen was diagnosed with Acute Myloid Leukaemia with a FLT 3 mutation. The disease was so advanced that he was told that he had just two weeks to live unless treatment started immediately. Within hours he was transferred to the Bexley Wing of St James Hospital, Leeds, under the haematology team of Dr Richard Kelly.

“The transfer took place at 2am in the morning on 2 July 2022,” said Stephen. “By 4 am the team had started my first round of chemo and treatment for my chest infection which remained a stubborn complication for a further three weeks. It was touch and go whether I would pull through. The medical team was outstanding but it was my wife and children who were amazing, helping me through the darkest days by sitting at my bedside every day, 12 hours a day, keeping my spirits up, interacting with doctors and nurses and keeping a daily diary of my progress.

“Miraculously, I was discharged from hospital just five weeks later on 5 August in remission! I was weak and had lost all my muscles and mobility. My life was now focused on a high protein diet and a regime of rest and Pilates exercise (lead by my Pilates teacher wife) to build me back up again. I have now completed an additional three rounds of chemo as an outpatient – driving myself back and forth to hospital every day.

“I cannot speak highly enough about the care and treatment I received under the haematology team at St James’s Hospital – professional, empathetic, gentle, encouraging. It’s thanks to them that I am now in a position to be given a stem cell transplant and the hope of a cure.

“I want to share my story so that others might learn from my experience and secure an early diagnosis. I want to urge people not to be discouraged by those who do not know what you are experiencing or have the ability to delay you getting a prompt medical assessment – blood tests are the only sure way of identifying leukaemia – do whatever it takes to make them happen for you.”

Before his diagnosis, Stephen enjoyed five sessions of Pilates a week, golfing with friends and long walks in the countryside. He also carried out DIY building projects and gardening jobs like mowing the lawn and cutting hedges.

“Pre AML, I was extremely strong, self-sufficient and capable,” said Stephen. “Post AML that independent self-sufficiency has disappeared and developing the ability to ask for help is now one of my most humbling and challenging learning experiences. I used to think that napping in the afternoon was not for me, but now the afternoon meditation or chill-out out on the sofa is an essential part of coping with the intermittent bouts of fatigue brought on by AML and helps maintain my energy levels. My wife started to get my muscles and joints moving by manouvering and massaging my legs while I was still in bed recovering from chemotherapy. Pilates is part of my life and has helped me to regain muscle mass and joint flexibility in just a few weeks after leaving hospital.

“My wife, children and six grandchildren are the greatest joy-bringers in my life. That’s why one of the hardest things to come to terms with is having to keep my distance from them. AML treatment compromises the immune system and makes you very vulnerable to any and all infections. The threat of sepsis is ever-present. The need for social distancing between me and my loved ones and being unable to hug and play with my grandchildren is, for me, AML’s greatest torment.

“That’s why I am determined to positively endure whatever this disease and its treatment throws up and hope and pray that the stem cell transplant I am to have will take me on a journey that will end with me being able to live life to the full and to recover my confidence and independence.”

Stephen is hoping to have his stem cell transplant in February 2023. His wife Eugenie undertook an 18 hour marathon Pilates teaching session on Zoom from 6am on 29th January to raise money for Leukaemia UK. Blood cancer is the fifth most common cancer in the UK yet its early diagnosis remains elusive because the symptoms are often overlooked. Leukaemia UK has heard of countless examples of people, like Stephen, being diagnosed with the disease only when they end up at the A&E department of their local hospital.

“We were completely traumatised when the doctor told us Steve had an aggressive blood cancer called acute myeloid leukaemia,” said Eugenie. “That’s why I am so committed to joining the campaign to raise awareness amongst GPs about blood cancer symptoms. The earlier the disease is spotted the better the chance of successful treatment, prognosis and quality of life.”

You can support Eugenie’s fundraising by donating to her JustGiving page.


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