“I wake up every morning feeling grateful to be here” – Julius’ myeloma story
Julius, 66, is a Black Belt 6th Dan karate instructor. Having been fit and healthy all his life, he was shocked to be diagnosed with stage 3 myeloma, a type of blood cancer, in September 2019. Now, thanks to treatment, he is in remission and continues to enjoy the martial arts that have been his passion for over 40 years…
Karate has been the one constant in my life, a passion that has not waned in over 40 years. I started my own karate club in 1986 and at the time of my diagnosis, I was teaching there every week, alongside working full-time running an agency supplying domiciliary carers.
I was super fit, I didn’t drink or smoke, had never taken drugs, I ate the right foods and exercised regularly. As my friends later said, I was the last person you’d expect to receive a cancer diagnosis.
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But in July 2019, I started to feel as if my heartbeat was irregular. I felt out of breath going up stairs. I had never felt breathless in my entire life. I was used to running up the stairs 10 times a day without any problem. Now I was gasping for air walking up just one flight. I knew there must be something wrong and booked to see the GP. I assumed I had a problem with my heart. But an ECG and blood saturation tests showed my heart was strong. My GP wanted to investigate further and sent me for urgent blood tests at the hospital to be done the very same day.
Within a few days, I had a call from the hospital referring me for a haematology appointment. I was told I would need a biopsy. At this point, I was very blasé. Even though I was told there was a possibility I had some form of blood cancer, I wasn’t worried. I was absolutely certain there had been a mistake and that I would be given the all-clear once all the results were back.
‘The word ‘treatable’ gave me confidence’
In September 2019, I returned to the hospital to meet the haematology consultant. When I opened the door, I saw a Macmillan nurse in the room and straight away knew something wasn’t quite right. I was not prepared for the results I was about to get. My previous knowledge of Macmillan nurses was an association with end-of-life care, so when the consultant explained they were sorry to tell me I had tested positive for myeloma, I feared the worst.
I had heard of myeloma before, but didn’t know much about it. My consultant explained what it was, and although she told me it was not curable, I found it reassuring to hear that it was treatable. The word ‘treatable’ gave me a degree of confidence and I was able to feel positive about the future. But I don’t remember very much else about that day.
There was the initial shock at my diagnosis. I think I went blank and numb. I don’t remember hearing a huge amount of what was said or how I would be treated. I don’t even remember how I got home from the hospital. I know some people like to talk about these things, but I felt a sense of emptiness and just wanted to be alone. I didn’t want to speak to anyone, I just needed time to understand and process what was happening to me.
The Macmillan nurse advised me that it was helpful to be open with people about my cancer diagnosis and I have to say, everyone has been so supportive. My friends and the karate community have been amazing and as a result, I am still the same happy person with a great love of life.
‘You have to be positive and keep fighting’
My consultant wanted me to start treatment immediately, but there was a karate competition coming up and I wanted to be able to support my team taking part in that, so I asked for it to be postponed. But in November 2019, I started six months of chemotherapy.
In July 2020, I was offered a stem cell transplant. I knew there were risks attached to this, but because it would potentially offer me a longer period of remission, I was keen to go ahead. I spent six weeks at The Royal Marsden, including two weeks in isolation, but at the end of it, I was told that it hadn’t worked. This was incredibly disappointing as I had really hoped it would help me. It was a massive low point and I took the news harder than when I was originally diagnosed with cancer. That said, the nurses at The Royal Marsden were incredible. The level of care is on another level. My mother was a district midwife, and the care and attention I received was the same as I would expect from her. They clapped as I left the ward and there were tears too.
It was important to look ahead to the next step and not allow my disappointment to get me down. Worrying won’t change anything. You have to be positive and keep fighting.
In August 2020, I started on the drug lenalidomide and I have been on this ever since. I feel very lucky about this, as I am aware it was not previously available on the NHS. I am one of the first NHS patients to be benefitting from it and am doing very well – I have no side effects and it is really working for me. I am in remission and feel good.
‘Cancer research is so fundamental’
I visit the hospital every two months for check-ups and blood tests. But I wake up every morning feeling grateful to be here, grateful to see the sun another day and breathe fresh air. I am very philosophical. I don’t think too much about tomorrow, I very much live in the present. I have always been strong psychologically and karate teaches you to focus on the moment, not to look too far ahead.
I don’t think about the future, but I am very grateful to the scientists who have worked so hard to make these drugs possible. It is exciting to think that the next generation will have better treatments and more options available when it comes to tackling cancer.
Throughout my whole cancer experience, the only time I truly broke down was when I saw kids struggling with cancer. They hadn’t yet lived their lives. Children should not have to go through that. That is why cancer research is so fundamental.
I did a degree in biology and my major was in the chemistry of genes. Scientists were still mapping the genome when I did my degree and I am constantly fascinated by how far science has come. Better research is the only way to treat cancer. I feel optimistic because scientists now are making such incredible progress.
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