Brain tumour survivor Catherine Sutton shares what attendance at the Success Annual Conference means to her.
I have attended five Success charity conferences as an adult survivor of a childhood brain tumour.
For me, Success conferences have been valuable opportunities to meet other survivors of childhood brain tumours and families, to share experiences and advice. It is difficult to describe the intense feeling of isolation I have experienced. Understanding and recognition of the difficulties that I continue to experience are limited outside Success community. To meet others who have been through something similar is important and for me quite emotional at times. There is a definite feeling of peer-to-peer support amongst survivors and parents. The virtual/online events that were necessary due to the COVID pandemic could not provide that valuable sense of community and group support.
I feel myself to be very fortunate to have been aware of and involved in Success activities for the last four years. The annual conference is the largest event and an excellent opportunity to learn more about charity activities: support for survivors and families, promotion of better holistic recuperative care and understanding childhood brain tumours.
Success conferences involve survivors, families and professionals. Survivors, like myself, are given a voice and opportunity to tell our stories which are, of course, all different. Nowhere else offers this but our voices need to travel further so more survivors can be heard, supported and achieve their best in life. Professionals make important contributions, providing information but also speak directly to survivors and families which is important because many survivors are not able to access the services they need. I also feel that it is important for professionals to hear the reality for survivors directly from survivors and the importance of a holistic approach to recovery. It is also heartening to hear that professionals benefit and learn from survivors, families and their attendance at conferences.
The first conference I attended was in 2019 and felt an immediate change in atmosphere as I entered the hall. There was no need to explain or defend myself. For much of the time I feel a need to protect myself from assumptions, misinterpretation and challenges to my atypical life trajectory. Not necessary here, I could let the guard drop!
Of course, the horrors of Covid -19 meant that the following two conferences were virtual.
I spoke at the 2023 conference (postponed from 2022 due to train strikes) and hopefully proved the point that I wasn’t reticent about speaking as was previously suggested. I was surprised to find that so many stopped to talk to me during the day and wanted to discuss some issues I had spoken about. I think it brought home to me the importance of the conferences particularly for those at the beginning of their journey. As I alluded to previously, it is very unlikely that a survivor will meet another through typical day to day interaction and that, I believe, is what makes the conference so special for survivors and families. It was emotional at times to meet younger versions of myself and reflect on how confusing the world can be after treatment and having to readjust. This all takes time and no one can do that for you. I can only hope that some of what I said helped someone.
