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INTRODUCTION

We know from personal experience that the diagnosis of cancer is a stroke of fate that brings up many questions and provides few answers. Living with cancer means suddenly having to overcome many fears.

It means deciding whether to tell others about the disease or to conceal it, finding strength while acknowledging weakness, living a normal life while struggling with daily challenges, and reassessing life priorities. But above all, it means hoping that, one day, the cancer will be cured.

Before the year 2000, Chronic Myeloid Leukaemia (CML) was fatal for most patients. Today, through major progress in research and medicine, most patients can live a long life with the chronic disease that is CML.

 

Even today, the experience of living with CML lies somewhere between fear, courage and hope. Every day, patients and their families experience challenges, both large and small, that they need to facecope with.

Creating this book was a wonderful opportunity for us to profile the unique stories of sixteen people who are living with CML. Their stories are not at all about medicine and biology – they reflect how the challenge of cancer changes your life, and how it forces you to shift your priorities in order to rediscover what is most important to you.

While these patients share the challenge of CML, their journeys are so different. We hope that through centring on these people’s faces and stories, this book will give support, hope, courage and inspiration to those who have to live with cancer.

Bert Spangemacher & Jan Geissler, CML Advocates Network

Living with cancer is sometimes like a roller coaster ride.

More than 46,000 Europeans get diagnosed with leukaemia every year, of which more than 6,000 get Chronic Myeloid Leukaemia (CML). I became one of them in 2001, at the age of 28, and I suddenly found myself on that roller coaster ride.

A quick online search showed me that other people with CML were out there, forming grassroots patient networks. I soon got in touch with other patients like me. Everyone was desperately looking for information about the disease, about therapies and how to manage side effects, about new results from clinical trials – but mainly about how to cope and hope while having cancer. Everything seemed to have changed in my own life from one day to the next, but thanks to my link with the online community, I never felt alone.

Through my personal interest but also my involvement with the worldwide CML Advocates Network, I have made friends with cancer patients all across the world. What amazed me most was that everyone had a different story to tell, a different journey to travel, a different roller coaster to ride – but sharing those stories of hope and anxiety, of desperation and determination, of helping others and being helped, always gave me more energy than it took.

By coincidence my path crossed with photographer and CML patient Bert Spangemacher. Working with him on this book has certainly been very close to my heart. While much is out there about CML and medicine today, still little is known about what having cancer does to someone’s life. This book not only takes you on sixteen different journeys of life, showing the ups and downs of life with CML, but also spotlights a broader truth: that living with cancer is no one’s choice, but refocusing on the most important things in life can certainly be a good side of itactually be an unforeseen advantage.

I really hope this book provides courage, hope and inspiration to all those living with cancer. It certainly did for me.

Jan Geissler

In October 2009, I was diagnosed with CML during a routine check-up.

I will never forget the moment when I was called by my doctor and received the news. In that second, I felt as if my life plan had been derailed and that I had lost my sense of direction. The CML diagnosis forced me to start a new chapter in my life with many questions and uncertainties ahead of me.

After dealing with the initial shock I became occupied by learning the basics about CML, but despite all the information one can find online or offline about the disease I still had many unanswered questions: How did other people with CML manage their diagnosis and treatments? What did they go through and how are they doing today?

After living with CML now for almost five years, I have my own story to tell and I wanted to capture other CML patients’ stories through what I do best, photography. Capturing the right moment, finding the perfect composition, and utilizing light and shadow is my way of communicating. Each CML patient has changed his or her life in one way or another and has learnt to adapt to new circumstances. Perhaps they have used this incident to go on a very different path, to begin a new life.

I want to support other CML patients and their families by sharing these stories of hope with them.

This book could not be possible without my partner, Leukämie-Online platform founder Jan Geissler, who found me by chance and invited me to the 2009 CML Horizons meeting in Munich, which influenced me greatly and led us to embark on the journey to make this book together.

A CML diagnosis is hard, but it can also lead to creativity, courage and love.

Bert Spangemacher

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