OPINION: Living with myeloma positively changed my life in many ways

Last week Judy Dewinter was awarded Jewish Care’s Topland Business Award in recognition of her selfless dedication to Myeloma UK and to others like her who are living with myeloma – an incurable bone marrow cancer. Here she reflects on her extraordinary 20-year journey and what drives her to do more:

I was diagnosed with myeloma at 33, which is extremely rare considering the disease has a median age at diagnosis of 75. 

I felt scared and isolated. Isolated because I’d been told that my prognosis was just another two or three years to live and there was nobody to talk to for advice or hope. 

If, during those first days and weeks, somebody had spoken to me, 15 years after their diagnosis, it would have given me hope where there was none. That’s why I make it a priority to speak to patients. I’ve walked in their shoes – I understand that helpless feeling. If I can take the edge off their fear, I absolutely must. 

Using the knowledge I’ve gained as a patient and through my work at Myeloma UK, I am able to help patients cope by understanding what they are going through and help them form a practical plan of action. Speaking to patients and their families is without a doubt the most crucial thing I do and perhaps on a human level the most important. 

I discovered Myeloma UK soon after my own diagnosis. Having spent 18 years at Instinet, being part of its growth from a small US broker in the UK to a large successful firm, I saw many parallels in Myeloma UK. Here was a small charity, based in Scotland with so much potential. An organisation only interested in the bottom line, achieving impact – and putting clients first – but in this case clients were patients and the bottom line was a cure. Time was not on my side, so engaging with the right organisation was critical to my ability to survive.

Since engaging with Myeloma UK, I’ve had two bone marrow transplants and various forms of chemotherapy after relapsing a couple of times.  I’ve not always responded to treatments that were offered to me. I liken it to living on the edge of the cliff.  The right drug being available to me at the right time is the only way to survive this unpredictable and evolving cancer.  

The driving factor that has kept me and Myeloma UK motivated on behalf of patients is simple – myeloma patients in the UK die sooner than they should because they can’t get access to new effective drugs when they need them. 

I am here today because of a drug that wouldn’t be available if it weren’t for the work of Myeloma UK. I represent others in the same situation.

I grew up in Chigwell. My parents were very involved in the local community. They founded the shul in Chigwell and helped build a thriving community. 

I will soon mark the 20th anniversary of my father’s death.  I was diagnosed shortly after he died, so he never knew. But I know my dad would be very proud that I was presented with  an award from Jewish Care – an organisation with which my parents were involved.

What’s so special about the Jewish community is our ability to call on each other in a way that is quite unparalleled. Our community is made up of individuals who want to help a neighbour, a friend, even a stranger, to find the best support.

When my career was thriving, I donated to charities but I didn’t have time to do more. What I’ve learned is that through our networks and our successes we have the ability to really improve lives. Sometimes it’s the busiest people – the ones who claim ‘I don’t have time’ – who are the most effective at doing this. We can simply donate to charity. But when we get involved and help turn a good cause into a really successful one, that’s when we really make the cards we’ve been dealt worthwhile. 

This is without a doubt the most satisfying time of my life, seeing the benefit of the work I’ve contributed to. I am seeing lives extended and knowing I’ve played a part. 

Support from friends and family enables me to do work that’s so important to me. They 

understand I have limited energy and capacity so sometimes I can’t put them first. They are, without a doubt, my unsung heroes.

• For more on Myeloma UK, visit www.myeloma.org.uk or call the free helpline on 0800 980 3332