by Andrea Ferrari, MD, Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, Via G. Venezian, 1-20133 Milan, Italy
The paper “Clouds of Oxygen: adolescents with cancer tell their story in music”, recently published in the Journal of Clinical Oncology, tells a great story. With the words of teenagers, the paper talks about a project in which teenagers with cancer teamed up with a well-known rock band and created a song that gave them a chance to tell their story in music.
The paper tells the readers that adolescents with cancer are a unique group, with special characteristics and needs. The diagnosis of cancer at this particular age may have severe psychological consequences and may interfere with adolescents’ need to become independent, develop their social relations, and make plans for the future. It is very important to help young patients to cope with the emotional burden of their disease and to make it an integral part of their personal life story. And it is more and more important to give them special tools to do this. We found this way: twenty 15- to 25-year-old patients – half of them while receiving treatment for their cancer, the other half during their subsequent follow-up – worked for eight months with the help of professional musicians to collect phrases, images, hopes and fears, notes, snippets of hospital sounds, and then blended it all together to create the song. The project was developed as part of the Youth Project at the Istituto Nazionale Tumori in Milan, Italy (www.ilprogettogiovani.it) dedicated to adolescents with cancer, with the aim to optimize clinical care (eg, adolescents’ inclusion in clinical trials or fertility-preserving facilities) but also to improve the attention to patients’ quality of life.
Through music, adolescents communicate to others what they are unable to say in so many words: their search for their own identity, the sense of life, love and sex, the urge to rebel, their hopes for the future. For physicians, the music became a complement to the medical care and psychological support that teenaged patients need.
In the paper, it was the adolescents who explained the meaning of the lyrics. “It was an opportunity to do something together with people who had the same problems as me, to see that it wasn’t just my problem”, said Elisabetta (being treated for soft tissue sarcoma). “The best feeling of all is knowing you have a future and that it’s in your hands”, sing the teenagers, feeling the strong need to regain control over their long-term future. Moreover, our patients felt the importance of their role as spokespeople. They know that this project may be something more important than just a song. Another patient, Megi, said “We have an important responsibility. We want to make it known that teenagers can have cancer too, and they can be cured but only if they receive the best treatment at the right time. It is sometimes difficult for adolescents to access centers of excellence and enroll in clinical protocols, so they have fewer chances of cure than children with the same disease.”
The publication of this story in the Journal of Clinical Oncology is proof that the oncology community recognizes the importance of coping with the complex psychology of teenagers with cancer, providing dedicated projects and novel methods to communicate with their inner world.
Read the full paper in the Journal of Clinical Oncology: Clouds of Oxygen: Adolescents With Cancer Tell Their Story in Music
by SarahRose Black, BMus, MA, MMT, Music Therapist, Princess Margaret Cancer Centre and Kensington Hospice, CKN Music & Creative Therapy Section Editor
In my work as a music therapist at a cancer centre in Toronto, I am reminded of the power of telling stories through song on a daily basis. Whether I am supporting a patient by telling their story through a song from their childhood, or am helping a patient compose an original song about their experience, I am always humbled by the power of narrative and the amplification of that power when narrative is coupled with song.
The project developed at the Istituto Nazionale Tumori which culminated in the production of “Clouds of Oxygen” by the B. Livers, a dynamic and courageously honest group of adolescents in the midst of undergoing cancer treatment, is a remarkable example of that power. The adolescents ask the difficult questions, confront the pain and the challenges they face, and use the power of music to communicate not only their thoughts and feelings, but also a deep sense of empathy and mutual understanding within their shared lived experiences. What struck me most about this particular project was the beautiful way in which the adolescents were able to creatively self-express on their own (individually singing), within their peer group (singing with each other) and within a larger group of caregivers and hospital staff. The ever-amplifying power of song and narrative increases as a group of people can collectively engage in that song and story.
Witnessing the finished product, the stunningly captivating video and the gorgeous melodies interspersed with hospital sounds and intricate instrumentation was so moving. Undoubtedly, the experience of being able to produce a finished product that exemplifies and captures the adolescents’ lived experiences is a powerful gift for everyone involved.
Reading this article and watching the beautifully produced video was deeply moving, and reminded me of the magic that happens when songs are used to tell stories.