6 minute read
by Karen Risgaard, Hanne Lisby and Pia Riis Olsen
Mirroring life with a brain tumour
Karen Risgaard, Hanne Lisby and Pia Riis Olsen
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The Danish Brain Tumour Association
“The films make me remember and bring back memories of unsolved problems that I realize I need to face now.” (a brain tumour patient)
Karen Risgaard Hanne Lisby Pia Riis Olsen
Many patients and their relatives are emotionally moved watching the films we created and they tell us that we have managed to capture their lives and that they completely recognise the situations displayed.
In September 2021 we (The Danish Brain Tumour Association, HjernetumorForeningen) released nine short films on our webpage about the impact a brain tumour can have on a family . From members of our Association we had experienced a huge need for understanding of their environments and about the consequences of living with a brain tumour .
Therefore, we produced the films to enlighten people and raise general awareness of the impact of life with a brain tumour – and additionally increase knowledge especially among politicians, healthcare professionals, general practitioners, job consultants, colleagues, and newly diagnosed patients and their relatives . Being a small patient organisation with about 280 Danish members, we needed to create something extraordinary and hoped that visualising the issue might catch people’s attention and make them better understand .
We chose to focus on a patient with a low-grade brain tumour, as we have experienced their situation to be hugely challenging during survivorship over many years . They are expected to continue their everyday life as before and return to the same jobs . Many friends, colleagues etc . have expectations that the patients can rarely meet .
In the films we follow “Lotte” from the night she wakes up with an epileptic attack, through examinations and an operation to the problems that arise when she is expected to return to a demanding job . Nobody understands that Lotte is challenged and that her brain is affected by the operation . Lotte’s husband and daughter also experience huge changes in their lives due to Lotte’s brain tumour .
We want to tell people that there is a life to live, though a family member’s brain is affected by the tumour and its treatments . Our main message is in fact that it is important to talk about what happens . To live with a brain tumour, there must be understanding and acceptance from people around the patient and the family .
To illustrate a realistic picture of Lotte’s life, we chose to cooperate with The School of Actors Ophelia . Therefore, all roles in the films are played by student actors . The instructor interviewed several patients and relatives before he wrote a manuscript, which we in our Association subsequently prepared thoroughly with him . The COVID pandemic threw a spanner in the works as we were not allowed to enter any hospital to film important scenes . So, our films were delayed - but they were worth waiting for!
We celebrated the release of the films in a cinema in Copenhagen, where all nine videos were combined into one film, so the audience could have a full experience of the messages in the films . Afterwards, we had a lovely reception with members of our national Brain Tumour Association (HjernetumorForeningen), the actors in the films and healthcare professionals .
During the following weeks, the films were presented one by one on our Association’s webpage . In connection with the films, we drafted short articles about the issues and challenges shown in the nine films, and we also referred to research on the chosen topics .
Finally, we added subtitles to the films in English to make them understandable to an international audience .
The project involved massive work for us over many months – not only because of the pandemic . It was necessary to cooperate with a professional company to get the permissions and appointments . As the manuscripts were created, it became clear that there were two very different approaches which should be combined in the films . On the one hand, our Association had a clear requirement for clarity and authenticity regarding the tumour, the symptoms, the operation etc and on the other hand, the film company had a professional idea of a good story, capturing pictures etc . But finally the manuscripts were ready and the production could be planned . ➤
Many things and details had to be organised and the actors had to familiarise themselves with life affected by a brain tumour . The actress who played Lotte had several meetings with patients so she could be acquainted first-hand with the challenges and deliver an authentic performance regarding the cognitive impairments following a brain tumour diagnosis .
The production was quite expensive (Euros 68,000) . It was only possible because we had supplementary funding . To our great delight we have had much positive feedback from people who have watched the films and we have observed an increase in the numbers of members of our Association .
We hope this article and our films will inspire some of you! n
You are welcome to be in touch with us for further information about the project. Please contact: Hanne Lisby, Vice Chair, HjernetumorForeningen, at hanne@hjernetumorforeningen.dk To view the films on our website, please visit:
https://www.hjernetumorforeningen. dk/fakta-om-hjernetumorer/film/
or you can watch our videos on YouTube: Hjernetumorforeningen
In the IBTA’s podcast series, “A Brain Tumour and Me”, we bring you inspirational, moving and personal stories from the international brain tumour community as we meet some of those working in the field of neuro-oncology, the people who support patients and their families and those who’ve been told they have a brain tumour. We learn how brain tumours affect all of these people, often in surprising and unexpected ways.
“A Brain Tumour and Me” is available via Apple Podcasts, Google Podcasts, Spotify, CastBox, Anchor and the IBTA website at www.theibta.org/podcast
United to Fight Brain Tumours. BRAIN TUMOUR ASSOCIATION OF KENYA (BTAK)
VISION
A country where all brain tumour patients receive quality healthcare, patients and caregivers are well informed and supported.
MISSION
To promote delivery of quality healthcare for brain tumour patients. We also aim to provide information, support and to advocate for brain tumour patients and their caregivers in Kenya.
PILLARS
To promote quality, accessible, and affordable healthcare for brain tumour patients.
To engage in advocacy, creation of awareness and dissemination of information on brain tumours.
To support Research, education and innovation in management of brain tumours.
+254 707 935 011 www.btak.org Info@btak.org KMA Center, Mara Road Nairobi, Room 207
