"The Symphony of Us!”? I am what I am, because we are
What a strange name for a scientific research project… While every musician/singer is important in a symphonic orchestra, what about the role of patients in the cancer symphonic orchestra?
Author
Marie-Evelyne Feyerick
Well, when you think about the name of this project, especially if you are a patient, it makes an awful lot of sense.
Have you ever wondered what would happen if the choirs and vocal soloists were removed from the orchestra performing the last movement of Beethoven's Symphony No. 9? It clearly wouldn’t have the same charm. It would undoubtedly involve a musical arrangement that would, admittedly, result in something innovative, but would bear no resemblance whatsoever to the work intended by the composer. I am not sure Beethoven (although he was already completely deaf by the time he composed this work) would have appreciated that! Every instrument/voice has its place in an orchestra, and everyone (from the violin to the triangle) has a significant role to play in the group. Without each and every musician and chorister, 'Ode to Joy' would not be what it is. And you will agree with me that it would be a shame.
The cancer ecosystem is made up of a multitude of stakeholders: family members, friends, colleagues, volunteers and coordinators of Integrative houses, patient associations, oncologists, surgeons, radiotherapists, referent nurse or carers, psychologists, physiotherapists, general practitioners, neurologists, specialist doctors looking after patients suffering the consequences of their treatment, and of course researchers and philanthropists. And I am forgetting some, certainly.
Well yes 💡 I am. Where are the patients?
You may think I am exaggerating. However, patients are part of this ecosystem.
But they often find themselves in a secondary role, or even in reserve, instead of being a titular musician. At least that is how they often feel.
The patients are fully taken care of by qualified and competent healthcare teams and receive treatments that they often do not understand because of a lack of information and scientific knowledge (which is the case for most of us). They are asked to give their informed consent to clinical research, for which, once again, they often do not understand the scientific explanations given to them and do not always realise whether the research is exclusively national or international. On top of that they are not aware of how their medical and personal data will be used and protected. Patients are not always provided with explanations of the risk/benefit balance of the treatments they are receiving during a “classical journey” or during their participation in clinical research. What will the caregivers do when/if they mention a side-effect of the treatments they are receiving in the frame of clinical research? They feel abandoned once the treatment is over and are sometimes at a loss when it comes to thinking about returning to work. What should they do to manage the stress resulting from the trauma of having been diagnosed with a potentially fatal disease and survived, while others were not so lucky? How would they deal with the anxiety of a recurrence or a new cancer? Would they agree to continue receiving the treatments that would save their lives if it were to happen to them again? And how would they be able to cope calmly with the check-ups they would have to undergo for the rest of their lives? How would they be able to support a loved one suffering from cancer, when they know so well how aggressive the treatments can be?
In short, there are so many questions (and so many more) that often go unanswered. They are often seen solely as a patient, without any consideration for the fact that they are much more than that: son/daughter, partner, relative, friend, etc., with their own life (and work) story. We are certainly not all equal when it comes to illness.
But we all agree that cancer research, and the treatments and care protocols that exist, first and foremost benefit the patients. So why not give them a full place in the symphony orchestra? Who knows better than patients themselves what pitfalls they encounter along the way? Who knows the needs better than they do themselves? Addressing their questions and needs will be such a progress for best practices in cancer care.
That is what The Symphony of Us is all about: identifying what is important for the patient and finding a way to implement the patient’s values in the cancer ecosystem.
Thanks to this initiative, we will, more than ever, beat cancer all together. And life will be all the sweeter and more harmonious for it. I am honoured to represent the patients as President of the Steering Committee of this senseful project.
A real Symphony of Us ... and, as a patient, I am grateful for that.
Author bio
Marie-Evelyne Feyerick is a wife, mother, grandmother, but also Author, Management Assistant, Member of the board of a Cancer research fund, President of the Steering Committee of this project initiated by the King Baudouin Foundation, …, cancer patient who survived a battle.