Dennis de Graaf is 38. At the age of 30 he was told that he had a malignant brain tumor, which was pressing on his brain stem in a life-threatening way. He was a successful entrepreneur within an international company with a busy social life, flew all over the world and lived in a penthouse in the heart of Amsterdam. ‘I really lived in a childhood dream,’ Dennis says. ‘And suddenly you have cancer, you are very ill and your life is completely put on the brakes.’ Now, almost eight years later, Dennis is full of life again and he is one of the co-founders of the AYA Foundation, which raises money for age-specific integrated care for young adults with cancer. ‘I just know how important it is to pay attention to the psychosocial and age-specific problems you encounter as a young adult with cancer.’
It is quite exceptional that Dennis is doing so well after a brain tumor, he says. ‘I am a medical miracle: part of the 0.3% of people who survive a brain tumor without being severely handicapped. I only suffer from chronic neuropathy [zenuwtintelingen] in my legs and feet. And through training and a healthy life I can now deal with that well in terms of balance and the like.’ And he comes from afar. “I’ve had a long, tough treatment with some serious complications,” Dennis says. “When the treatment was over, I was in a wheelchair, I couldn’t speak or walk, and the doctors told me I would probably never be able to do many things again.”
Dennis understands that his doctors were not very hopeful about his rehabilitation. “There was no protocol for my situation, so they didn’t know how it would turn out.” But Dennis was not satisfied with the prospect that had been outlined to him. ‘I wanted to go back to work, I wanted to participate again, participate in society. It was an incredibly hard year of rehab, with intense physiotherapy and speech therapy, but I managed. I’m also proud of that and that gave me back a lot of self-confidence.’ He adds: ‘Of course I worked hard for my rehabilitation, but unfortunately such a successful rehabilitation is not granted to everyone, no matter how hard they work for it.’
Pick up the thread
After his rehabilitation Dennis went back to work. ‘I felt pressure to return to work, both from myself and from the company I worked for.’ That didn’t go as he had hoped. “I had 14 franchises when I got sick. The company had promised me to take good care of things until I could pick it up myself. But when I came back there were only 3 franchises left. They dropped me.’ Dennis nevertheless managed to successfully pick up the thread again. ‘Before my brain tumor it was work hard, play hard. I worked 60 hours a week, attended every party I could be. I thought I wanted that again.’ †
A year later I realized that this life would not make me happy in the long run,’ Dennis says. ‘I no longer got any satisfaction from constantly working hard, going out endlessly. That also no longer worked technically. Because of that change I did lose a number of good friends, but luckily I had enough friends that I loved and still have. My parents were also a great support.’ He continues: ‘I needed much more depth. I thought to myself: this is not the reason why I got through the eye of the needle. I wanted to find a way to make a difference to other young people with cancer.’
Commitment to AYAs and AYA care
Dennis came into contact with Dr Eveliene Manten-Horst, director of the AYA Care Network, through his oncologist. Dennis: ‘I have been able to volunteer for many years as an ambassador for the Care Network and have contributed to highlighting the age-specific problems that young people with cancer experience.’ He cites an example. ‘The clean slate scheme came into effect in 2020, which means that people who have had cancer are now much more insurable. I went to The Hague with my co-ambassador and Foundation founder Kim Gringhuis. We were able to talk to the then Minister of Finance Wopke Hoekstra,’ says Dennis. ‘We were able to tell him our side of the story, how difficult it is for you when you are labeled ‘cancer’ as a young person. That was really cool.’
It soon became clear to Dennis that the AYA Care Network needed structural funding. Dennis explains: ‘AYA care providers must be trained, hospitals must be made AYA-proof and more research must be done. Of course you need money for that.’ Initially, Dennis and Dr. Manten-Horst focused on this in a sponsor recruitment working group. ‘But after a while Eveliene came to me and asked if I wanted to get started on setting up a foundation. It was time to go bigger,’ Dennis says. ‘Eveliene told me she knew another enthusiast and linked me to Kim. We started talking to each other and then we worked very hard to set up the Foundation, which we officially launched at the beginning of this year.’ And with success, it turns out. ‘We have received the first donations and are already in talks with a number of large parties; the Foundation is really going to fly this year.’
AYA care for all AYAs in the Netherlands
‘Every AYA is different, every AYA wants something different. This must be taken into account in the medical treatment, but also in the supportive care that must be offered, and in the process afterwards. Because although the cancer is gone, it does not solve the problems that many AYAs experience,’ says Dennis. He also sees it in his environment. ‘Some people are pushed, just like me, by the employer, by social pressure, by their own expectations, to get back to 100% as soon as possible,’ says Dennis. ‘Often you constantly go beyond your own limits.’ But it can also go the other way. Dennis: ‘Others are completely rejected, are, as it were, excluded from society, while they still want and have a lot to offer. But that’s not being looked at.’
Every young adult with cancer in the Netherlands should know that AYA care exists and should have access to that care.
Dennis has not had AYA care himself – which was not there when he was under treatment – but certainly thinks it could have helped him. ‘You are looked at very medically, clinically. That tumor has to be cleaned up, the rest doesn’t seem to matter,’ says Dennis. “For example, it would have saved me a lot of worry if someone had had as a clinical occupational physician to be able to discuss my work and reintegration.” He continues: ‘After the cancer, you have to reinvent yourself. I put in a lot of work myself. But if from the start of my disease trajectory there was attention for me as a person – I’m Dennis, I’m not my cancer – that would have helped me a lot. And that is of course what AYA care does; therein is attention to who you are, what you want, what you need. Every young adult with cancer in the Netherlands should know that AYA care exists and should have access to that care.’
More information
This interview is part of the report ‘Cancer in young adults’ that IKNL and the National AYA ‘Young & Cancer’ Care Network published in June 2022. The report includes figures and stories from young adults with cancer.