By Tessa van Gastel | MSc
Through the entire proces, in which my brother became ill and couldn't get better, we got to know the Children's Cancer Association Netherlands. At the time, my brother went to meetings of the association. He went alone and I stayed at home. I didn't want to hear about it and found it especially sad. I looked for similar situations in my area, but soon found out that I wasn't going to find this one. My brother and I once went to a meeting for young people who have or had a brain tumor. Once inside, I got very emotional. I saw many similarities in terms of physical limitations and found out that my brother wasn't the only one. Also later in the proces, I noticed that in my 'normal' environment I did not find the right people to share my story with. Often they did not understand my feelings and emotions. In 2019 I went to the 18+ camp and strangely enough, I didn't want to leave. This association is so very special and so friendly. Everyone (unfortunately) has a relationship with childhood cancer and his or her own story. You don't have to say what you feel and why you feel something. With these fellow sufferers you feel the connection and that offers enormous support in these kinds of situations in families. I would rather not have met these people, but I am extremely grateful that this exists in order to share the trajectory you are in together.
If you have to deal with childhood cancer in your family, this has a huge impact. You can only feel this impact if you experience it yourself. The outside world often has no idea how much influence this has on your family now and in the future. During this trajectory you are involved with the disease every day, you are often in the hospital and you are busy every day with the treatments and the impact of what others are posting on social media. The people who can do the daily things such as school, sports and outings. While you are sick, you are not concerned with these kinds of things and you do not have time for them. I think that more attention should be paid to the impact of childhood cancer on a family. The later consequences of childhood cancer in a family also have a major impact. My brother unfortunately passed away and that was 2 years ago now, but the outside world does not see the later consequences and do not understand the grieving process either. Now that my brother has passed away, it doesn't mean that everything is over. As a family we have to learn to deal with a “new family”, a family without my brother. You feel the emptiness enormously and every day you have to deal with the fact that my brother is no longer there. Doing things and showing interest in others does not work in these kinds of situations. Just like in the trajectory, you are not busy doing fun things. You are working on the biggest change in your life, and that needs more attention.
By Tessa van Gastel | MSc
By Tessa van Gastel | MSc
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