"With Myeloma in the Bag", an innovative seminar series of the Multiple Myeloma. Support Group for patients on issues raised by living with myeloma.

Seminar: Living with myeloma with mindfulness

After the successful start last year, the seminar series "With Myeloma in the Baggage" was continued in May this year with the first workshop "Living Mindfully with Myeloma" in the picturesque Zell an der Pram Castle in Upper Austria.

The seminar series is aimed at patients and relatives and offers free workshops on topics that complement the life and everyday life of multiple myeloma patients to medical treatment. The pioneering idea of DI Thomas Derntl, himself a patient and deputy to the chairwoman of the MM self-help group, the topics addressed are essential for both patients and relatives. Because between visits to the doctor, chronically ill people are dependent on themselves.

This year, the Multiple Myeloma Support Group had chosen the Renaissance castle Zell an der Pram in the Mühlviertel, an impressive building with a wonderful garden on the banks of the river. The castle has been owned by the government of Upper Austria for several years and is used as an educational center.

In a bright event room, twenty participants listened and practiced for two and a half days how to deal mindfully with the disease and how to counter the pain that recurs in many patients with mindfulness exercises and acceptance. The topic of primary and secondary suffering was also on the agenda. By means of role-playing it was possible to impressively feel for oneself the heavy burden caused by brooding, worries, fears and visions of the future, precisely because this does not change the primary suffering, the disease.

Based on the methodology of the two programs MindfulnessBased Stress Reduction by Jon Kabat-Zinn and Breathworks Mindfulness for Health (UK) by Vidyamala Burch, both of which have been proven in clinical settings for decades, a workshop specifically tailored to multiple myeloma patients was developed. Scientifically based information on the functioning of the brain, the respiratory system and the breath, the development of pain patterns, as well as positive findings on light exercise in illness and a well-considered division of strength were presented as impulse lectures. Why are positive experiences so important and what does the innate negativity bias do in illness? The informational bites were accompanied by meditation, mindfulness and movement exercises that are easy to apply in everyday life. An important aspect was the experience-based exchange and reflection in the group after the individual exercises.

By becoming aware of the interaction between body awareness, the breath and the role of thoughts, emotions and feelings, we became aware of how much we ourselves control our reactions to symptoms and pain. Especially in the context of multiple myeloma, dealing with pain, worry and discomfort is a major challenge for many patients.

Morning meditations in the garden, standing, walking and simple yoga exercises brought life energy into the body. Breathing exercises that were easy to perform to ventilate the abdominal cavity and all parts of the lungs were received with great interest. The importance of positive things in life, no matter how insignificant, was emphasized as a counterbalance to the built-in negativity bias in the brain. Short breathing and compassion exercises showed ways to directly address unpleasantness close to the body, with a gentle touch on the spot, with acceptance, or with an attention via the breath.

In a trusting, friendly atmosphere, the participants also took advantage of the opportunity to actively exchange experiences over dinner and in evening discussion rounds while sitting comfortably together. In addition to the beautiful surroundings, the participants particularly appreciated the intimate atmosphere of a smaller group, as well as the time frame of a weekend seminar, which allowed for a more intensive exchange and reflection than at shorter events with frontal lectures.

The event was concluded with an impulse and exchange on medical topics with the multiple myeloma expert, Dr. Eva-Maria Autzinger, senior physician at the Department of Oncology and Hematology at the Hospital of the Sisters of Mercy, Vienna, who presented the current therapeutic approaches for patients with great professionalism and competence. In an active question-and-answer session, patients were able to voice their concerns.

Further seminars on "Our life as a couple, myeloma is always with us" and "Everyday life with myeloma - what does it do to me?" will be held in June and November this year.

The seminar was led by the experienced mindfulness trainer and pharmacist, Dr. Martina Esberger-Chowdhury, herself a family member and long-time pioneer of patient-oriented projects in Austria. The combination of scientifically proven methods, psychology and neuroscience, as a complement in the holistic view of the disease, is a focus of her work.

Learn more about multiple myeloma here.