ECPC's member of the month April 2010 is:

ARTHUR MASNY (POLISH LYMPHOMA ASSOCIATION "OWL EYES")

My Organisation

It so happens that I am representing two cancer patient organisations from Poland. Both are very close to my heart even though their goals are somewhat different.The first organisation the Polish Cancer Patient Coalition which I had a privilege to co-found is in its design an umbrella organisation whose goal is to present a single voice of many cancer organisations in Poland both at the national and international level. We want our voice to be recognised by the politicians, the media and by all those who affect the health policies in Poland. From its registration last year we have managed to grow two-fold already. The organisation represents over 25.000 cancer patients in Poland and it keeps growing strong.

The second organisation, which I am representing and which currently is in the process of applying to be an ECPC member, is the Polish Lymphoma Association “Owl Eyes”. PLA was founded in 2005 and for the past three years I have served as its President. Owl Eyes comes from how the Hodgkin Lymphoma cells look under the microscope, but they also have a different, more symbolic meaning to us. We want our organization to be those “eyes” for those suddenly struck by the disease who can not find their way in the “dark”. We are a group of people who in various ways have encountered lymphomas. You will find patients and their families, nurses and doctors among us. Together, we fight against loneliness, ignorance and being lost when faced with the frightening diagnosis. We support one another up, both in everyday life and in the most difficult moments. We are a national organisation, which offers support to people suffering from lymphomas throughout Poland.

We realize our goals through organizing national and local educational campaigns about cancer and its treatment. We have monthly meetings with patients and their families in the main treatment facility in Poland. During each meeting patients and their families have an opportunity to speak with doctors and experts from other fields including psychologists, dieticians and even entertainers who teach them how to cope with the disease and live a full life. We cooperate closely with other national and international organisations. We train volunteers and exchange our experiences. For the past two years with the help of our sponsors and supporters we collect money and help hospitals replacing their old equipment with the state of the art machines (e.g. infusion pumps, cardio monitors), which we hope will make treatment easier for patients.

My story

I am 47 years old. I am a international business attorney. I was diagnosed with Non Hodgkin Follicular Lymphoma in 2005. After receiving treatment I have lived a full and happy life both professionally and personally. In January 2009 my daughter Joy was born and my life was really great. Unfortunately, last August while we were on our first family vacation I found out that the disease is back even though the only symptom I had at the time was the persistent back pain. After our return, things rapidly deteriorated. Within roughly 10 days I lost 18 kilos and was in really bad shape. As it turned out I was experiencing a rare form of histological transformation - it turned out that my disease from Non-Hodgkin became a full-blown Hodgkin’s disease. Fortunately thanks to the expertise of my doctors and frequent consultations from many friends from abroad I am at the stage that allows me to look into the future with my usual optimism. I am writing this only few hours after my chemo, which turned out to be the roughest thus far, but it really looks that the end of this ordeal is nearJ. I started working again and I look forward to what lies ahead not behind. I do hope to meet you all in good health and keep meeting in years to come.

How to contact me

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See also our previous ECPC Members of the Month.