Life with Multiple Myeloma

Multiple Myeloma is the second most common type of blood cancer. The number of patients is rising, and the expectation is that in 2025, almost 46,000 people will be diagnosed with this form of cancer. Still, most people have never heard of this disease. To increase awareness, we are drawing attention to Multiple Myeloma during Myeloma Action Month in March. More knowledge about Multiple Myeloma will in fact lead to speedy recognition of symptoms, early diagnosis and, as a result, more successful treatment. We want to create more awareness with the slogan “Knowledge is Power”. See http://mam.myeloma.org/ for more information about Myeloma Action Month.

Life with Multiple Myeloma…

How do patients manage their condition? To paint a picture of this, we have published a book together with blood cancer patients throughout Europe, called ‘Make Blood Cancer Visible – Patient Perspectives’. In this book, patients describe their experiences with the diagnosis and disease progression so as to inspire and motivate others. Below, we highlight two stories from Multiple Myeloma patients.

Luísa Torres, Portugal “Believe that it will get better”

‘My name is Luísa; I am married and have two children. Just like other children, I had dreams and ambitions and I have always tried to keep to that path. But life is like a sandcastle: it takes a lot of time to build up, but only a short time to collapse completely. That is how I felt at the beginning of 2014 when I went into hospital with pneumonia. No one had thought that this would be the beginning of a long, difficult journey for myself and my family. The verdict came three months later. The doctor told me I had Multiple Myeloma. I had never even heard of the disease. It was very difficult for me to cope with all the emotions, and my family was in shock as well! In July 2014, my treatment began. First chemotherapy, followed by stem cell treatment. The loss of my hair after the treatment was a painful time. After a lot of misgivings, I decided to take part in a clinical trial in May 2015. New medicines can only be developed with the cooperation of society, a major motivation for me to agree to take part.

Today, the illness is under control and I have an almost normal life again. The difficult times were a learning process for me. I have learnt to set priorities and to put day-to-day situations into perspective. The support of my family and friends was crucial. I am extremely grateful to them for the unconditional love that they gave, and continue to give me.

I want to leave a message of hope for all those who are fighting against cancer. I ask you to carry on believing and never give up the fight. Continue believing in victory, a part of the cure lies in positive energy. The magic word is ‘believe’!’

Edelgard, Germany: “Giving up is not an option”

‘From October 2007 onwards, I had one infection after the other. I felt wretched. I had pain in my bones, especially my ribs, but the X-rays showed nothing. In April 2008, my condition was so bad that I was admitted to hospital. A bone marrow biopsy finally led to the diagnosis: Multiple Myeloma.

My world collapsed. I was extremely frightened and unsure and thought I would never get through this. Fortunately, the support of my husband, daughter and friends gave me strength and courage again. They were there for me, encouraged me not to give up and reminded me about the things that make life worthwhile. In addition, I had a lot of support from a psychologist specialized in oncology.

I blamed myself. I thought I had not paid enough attention to my body. My psychologist was very patient and gave me confidence. For instance, by talking about the progress I had already made. That gave me the feeling that I would be able to fight the illness in the future.

My life was going differently to what I had hoped, but I can cope with this by dealing differently with my life. Before I was ill, I often didn’t realize how beautiful life is. I am grateful that today, I can enjoy the simple things in life. All thanks to the support of my family and doctors and thanks to my treatment.’