"What remains is the scar on my head"
As part of the campaign "Unspeakable? Cancer in everyday working life", pme employee Max talks about his cancer at the age of 13.
"I'm Max, 27 years old. When I was 13, I had a bone tumor in the top of my skull". This is the story of our employee Max. In this interview, he tells us how he experienced his cancer, what helped him during this time and how he talks to childcare center children and adults about the still visible consequences of the disease.
Dear Max, what was it like when you were diagnosed?
Max: I was sick a lot, I always had a stomach bug and a fever. I also had double vision because the tumor was pressing on my optic nerve. As my mom had already had a brain tumor, the doctor said "I can't see anything, but we'll do an MRI anyway. This revealed a tumor the size of a tennis ball in her head. On the advice of my mother's oncologist, I went to the pediatric oncology department at the university hospital Münster.
Two days later, the tumor was removed. I then took part in various studies, had chemotherapy and radiotherapy, further operations and finally the affected part of my skull was removed. It was supposed to stay that way until I was 18 and fully grown. Fortunately, I was then placed in a new study and had a modern plastic material inserted into my head that grew with me. The treatment lasted a year and a half and since then I've had a lot of aftercare.
How were you - mentally and physically?
I can no longer really remember the physical and emotional pain. But I always knew that I would get better. I had the positive example of my mother, she had a brain tumor when I was seven. The chemotherapy was really bad though, I could hardly eat anything and had all these side effects.
But on the whole, you forget the bad phases and I think I've dealt with it pretty well. I wanted to get back to everyday life quickly, I didn't carry it with me for long.
How did you manage to get back to normal life?
It was difficult at the beginning. I always did competitive dance and also went to competitions. After the treatment, I wasn't as physically fit as I used to be and couldn't keep up at school straight away.
I wore a wig at school because I wanted to look like everyone else. At some point I realized that I didn't want to do that for the rest of my life. When I started university, I ditched the wig, nobody knew me here and I could start again.
What has remained of what happened back then?
It really brought our family together. Other families might break up when a child is seriously ill. We really stuck together then, I can still feel that today. Of course, I took the life experience with me. And I think it has given me a certain degree of self-reflection, knowing what is important in life and what I don't want.
Externally, the scar on my head remains. It used to cause me problems, but now I'm doing very well with it. I'm confronted with it every day through my work as a teacher because the children ask: "What's that on your head? What's that scar? Why don't you have any hair?"
Was the subject of cancer unmentionable for you at any time in your life?
Especially in my youth, the subject was unmentionable for me. I wanted to party, do sport and be reduced to it as little as possible. Now I think it should be addressed. It's part of my identity, it has shaped me and my family and made me who I am today. I've realized that the more open I am about it, the more I can tell people about myself and the more they know who I am. It's an almost daily topic in my educational work because the children just ask.
Why did you become an educator?
My whole life has been socially shaped. Through my illness and my family, I experienced how important social institutions are for a successful life. Then I went to a Waldorf school, which is very socially oriented. My mother is also a geriatric nurse and my older sister is a social worker. I was already a bit driven by my upbringing, and I also enjoy being around people and being there for others.
Was your illness an issue when applying for jobs?
If you get cancer as a child, you always get a disability card. That helps with recruitment because people with disabilities are given preference. But otherwise that wasn't an issue. I think the social sector makes it very easy for me because many people here are open and empathetic anyway.
How do you talk to the children about your illness?
With children, I don't say "I had cancer", I paraphrase it. I say that I was very ill as a child, but thanks to the doctors I got better quickly. I often say that I was given a drug that caused my hair to fall out and never come back. But that's not a bad thing because I'm healthy again now.
Children might also just ask "Why don't you have any hair?". And sometimes I just say "That's my hairstyle. Just like you have long, blonde hair, I don't have any hair". I don't always address my illness, I make that dependent on the socio-emotional and cognitive development of the children.
How would you like adults to treat you?
What helps me most is simply talking about it. I'm an open book, I like to talk about it. I would like others to ask with a lot of empathy and sensitivity if they are interested in something. For example, if my employer didn't ask openly, I would always have to make something up. Like why I have to go to the specialist for the fifth time. And that's why openness is the most important thing. It would be much easier for me if adults approached me as openly as children.
Suppose a colleague is diagnosed with cancer: what is the best way to support them?
I would tell everyone that health is the most important thing and that you have to listen to yourself and stand up for yourself. If you don't play your cards close to your chest, others can't know what's going on around you. The most important thing is to talk about it openly, speak to your manager, speak to your colleagues and say what's on your mind.
Who is the best person to talk to about cancer?
In my case, it's the people closest to me in my family. They have walked the path with me and grown with me. They know all the facets, they know what I was like then and what I am like now. My parents are the best advisors I could have.
How would you like cancer to be talked about?
I think that illnesses, regardless of whether they are mental or physical illnesses, should be given more space in society. Because then the fear of talking about it when you are affected or your relatives are affected is no longer so great.
All information about the campaign "Unspeakable? Cancer in everyday working life"
