“Letting go and being optimistic”
Even though 4 out of 5 children and adolescents suffering from cancer are cured today, the late effects are very diverse. They often result in survivors not being able to lead an independent and autonomous life. The topic of late effects and multidisciplinary follow-up care therefore also concerns many survivor parents, as they are often challenged psychologically, physically and financially for a very long time after treatment. Detachment is difficult, not enough attention is paid to self-care and quite often depression arising from exhaustion is the result of this permanent burden. Therefore, they also need reliable information and support options in this phase of long-term follow-up care. With the offer of weekends accompanied by professionals, Childhood Cancer Switzerland closes a gap in care and enables parents to actively deal with the topic of late effects and the follow-up care of their child in a protected setting.
From 11 - 13 November 2022, Childhood Cancer Switzerland organised a weekend accompanied by professionals for parents of a survivor with late effects. The three-day event was carried out in cooperation with paediatric oncologist Prof. Dr. Katrin Scheinemann, the Head of Legal Services at Procap Martin Boltshauser, psychologist Andreas Dörner and Birgitta Setz, Co-CEO of Childhood Cancer Switzerland. The topics included medical issues, such as late effects and the importance of follow-up care, but also psychological issues, such as how parents of survivors can learn to distance themselves and let go. There was also a lot of helpful input on social security issues, especially about training and working life. It once again became clear just how difficult it is for affected parents to understand the complex Swiss social security system and how much they feel overwhelmed and left alone. The open exchange of experiences in the group, the sharing of worries and fears, but also accepting sadness and anger – and having the opportunity to laugh – were also beneficial. The fully booked weekend once again showed how important and beneficial both the transfer of knowledge and the exchange among like-minded people are. Inwardly strengthened, well informed and confident, the 20 participants travelled home again on Sunday convinced that “I am not alone”.