When the hematologist announced in October 2009 that I had an incurable blood cancer called multiple myeloma, with a high-risk profile at that, I was stunned. I was 61 years old. I had always been an active, high energy person who had never been sick a day in my life. How is it possible, I wondered. Almost out of reflex, I asked: how long do I have to live? The answer was blunt: "Wrong question", she said, adding "lots of research is happening in the field, with a bit of luck, you might benefit".
Then and there, I realized that I needed to take charge of my life and deal with the challenges of myeloma and treatments head on with confidence and hope. Most importantly, I told myself, "I am not my disease. I have a life to live and I will live it my way regardless of this illness."
It is now May 2025, almost 16 years after diagnosis. I have gone through 5 lines of treatment, including 2 stem cell transplants, in 2010 and 2018, as well as CAR T-cell therapy in May 2022. Today I take no myeloma-specific medicines whatsoever and I dare say, it's as if I never had myeloma. I feel completely cured. The hematologist was right in 2009: I am lucky and I did benefit from the fruits of research. And I am alive and well.
So, how did I live during those 16 years since diagnosis? I lived as I always did. I simply fit the various lines of treatment into my lifestyle. I love sports. I continued to play squash and tennis, to practice yoga, and to ride my bike: 2 hours of physical activity everyday. Even today, at the age of 77, I keep to the same routine, except for the squash, which I retired from aged 70. My great passion is travel and exploration. I do not have the space here to recount my many adventures. But suffice it to say, I did not abandon my passion, I simply adapted myself to the prevailing conditions of life, accepted the new reality, and maintained a positive attitude with the invaluable and irreplaceable support and love of my family and friends.
Above all, I continued to pursue my passion for long-distance cycling. After my retirement at the age of 65 in 2013, I began a series of long-distance cycling trips. By long-distance I mean any where from 600 miles (1000 km) to 1500 miles (2500 km). I have cycled throughout South-east Asia in the winter months: Thailand, Laos, Cambodia, Malaysia, Indonesia. In the summer months I cycle in Europe: France, Italy, Germany, Austria. I have a love of cycling great rivers like the Mekong in South-east Asia and the Danube in Europe. In June I will cycle from Berlin to Vienna over Prague, 750 miles (1200 km). Then in September I will cycle the Camino, the Saint James Way, from the Franco-Spanish border to Santiago Compostel.
Why do I cycle around islands, across mountain ranges, and along rivers, meeting wonderful people along the way? Because they are there and because I can be in touch with just living my life to the fullest. Every trip is an opportunity to invest myself into something exciting and psychologically enriching, something that builds my confidence and gives me hope in the future. Every project is a life-enhancing initiative to embrace a new challenge and persevere. Just like the challenge of myeloma.
We all rise to the challenge of living with myeloma and live our lives as fully as we can, adapting to the setbacks and enjoying the successes we achieve. I believe that there is a strong mind-body connection that has yet to be seriously investigated. With the right mental attitudes, we can influence the success of our treatments. There is certainly a strong interaction between our biological and neurological natures. We can put mind over matter and improve our outcomes. I await the day when our healthcare professionals will be in a position to prescribe both effective medicines and cognitive therapies that improve our survival outcomes as well as our emotional wellbeing during treatment.
My heartfelt wishes to all on your myeloma journey!
