CML Advocates Network

CML patients from Denmark, France, Germany, Ireland, Israel, Italy, Lithuania, Macedonia, Netherlands, Poland, Portugal, Russia, Spain, Sweden and UK tell their story, e.g. where they turned for support since their diagnosis, how they have faced living with the disease, and the way their personal and professional lives have changed since then are the subject of these sixteen inspiring stories told through photographs and interviews.

Here are some snapshots of the book profiling the sixteen patients that were interviewed:

David from Ireland

Christine from Italy

Dragana from Macedonia

Ros from Russia

Monique from the Netherlands

Sarit from Israel

Fernando from Spain

Rita from Denmark

Sarunas from Lithuania

Mina from France

Carin from Sweden

Euzebiusz from Poland

Michelly from Portugal

Karen from the United Kingdom

Jan from Germany

Bert from Germany

The Team that produced this Book

1 comments

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.

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, 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 actually 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 and 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