Why this particular number?
“A nice band, also Haags, that I have been following for a while. I listened to this song often, but on a sailing trip with fellow sufferers – people who have also had childhood cancer – it really hit me. I was tired, completely done with that trip because it was physically much too heavy and at that moment I really heard those lyrics. About how the singer had lost himself and was looking for a home within himself. That’s exactly what I felt.
I literally no longer recognized myself in the mirror, but also not in terms of behavior. Everything came together at that moment, there on that boat. This song has given me hope and strength in my recovery, I even had ‘feels’ tattooed on my wrist, in his handwriting. A beautiful memory and, above all, a beautiful message.”
What does the song say about your life?
“When I was 17, I was diagnosed with… Hodgkin’s disease observed. Lymph node cancer. In the summer I had some flu symptoms, after the holidays I came back exhausted and had all kinds of vague complaints. I continued to struggle until November, I had just been on a study trip and I thought I hadn’t given myself enough rest. The GP was shocked by my inflammation levels and sent me to the emergency room, but I still thought ‘gee, it’s late, let’s eat at home first’.
After that things went quickly. It turned out that I had a tumor that was pressing on my lungs, and I had to have surgery on Saturday for a biopsy and a bone drill. I thought that was strange, but afterwards it turned out that the doctors were already thinking about cancer, but could not yet say for sure. I had six rounds of chemotherapy and after six months I was cleared.
All survivors of childhood cancer
“But then it just started. I became an adult in one fell swoop. Just starting secondary vocational education, I suddenly became concerned with life and death instead of homework and outings with friends. Because of the medication I had outbursts of anger and also the pain does a lot for your mind, still does.
During the treatment everyone said ‘oh you are so positive’. My parents also gained a lot of strength from that, but for me the blow came later. I couldn’t cope with a new class and a whole day at school. It felt like everyone saw me as that sick Dewi-Jill. In that respect, that sailing trip helped me enormously, because it is nice to be with a group of like-minded people. Other childhood cancer survivors understand exactly what I went through. It also gave hope to see what some people were doing again after five years.”
“I’m quite a sociable person, but I still found it difficult to open up again at school. Fortunately, I found a nice group in the class that involved me and just liked it when I was there.
Now things are generally going quite well. I sometimes find it difficult to say how things are going, because I still have pain every day and suffer from the effects of chemo. I don’t want to be too heavy handed, but I can’t remember the last time I wasn’t in pain. I always have that feeling that your leg is asleep when you have been in the wrong position. That is small fiber neuropathy and that is a remnant of chemotherapy. If I do too much, it gets worse. Furthermore, I always remain tired, which you can compare with post-covid.”
Rebuild everything
“But I’m also getting better at it, luckily. I make a weekly plan of how I divide my energy over the week and what I eat in the evening to replenish that energy from work, for example. I’ve been living on my own for a year now. I’m very happy that it worked, but it is more intensive. Now I still have to cook after a day of work, for example.
It’s nice that the cancer is gone, that my hair is back and that my life goes on, but it’s really not easy. I had to rebuild everything. It is not finished after the treatment, then your new life only begins.”
What do you dream of?
“A nice and pleasant life. Everything is now, I live day by day. This year everything has fallen into place in terms of work, I am very happy with that. I have had to make a lot of adjustments. I graduated as an audiovisual designer, because I wanted to make documentaries, but that wasn’t physically possible. I also worked in a pharmacy for a while, which I also found fascinating, but it turned out to be too exhausting to stand all day. Now I work at the Ministry of Health, on the department that deals with medicines and medical technology. I work there as a communications advisor. This is where everything comes together.
I am at my best in the morning, so I start at 8 am. Then I can go home before rush hour and my body can handle it just fine. In the future I would like to buy a house with my cat and maybe a nice friend on the couch. And I think it would be nice to go to a concert while standing. Now I usually go in my wheelchair, because my nerve condition is only getting worse. I can barely stand standing for two hours. The last time I did that, I trained hard at the physio. I had to pay for that with more than two months of extra pain. You experience the music differently while sitting and often only one person is allowed in the wheelchair space. I would like to spend the entire evening among my friends again.”
What is your guilty pleasure?
“What can I say to that? I listen to so much music. One Direction, I think, especially last week when I was sick. Those well-known songs feel nice and comfortable. Just lean back for a while. Wonderful.”
February 15 is World Childhood Cancer Day. Dewi-Jill’s story can be seen in the new campaign from Kika.
What is your Final Agreement?
Which song should be played at your funeral? And what does that say about your life? If you would like to participate in this section, email your story to [email protected]
2024-02-15 08:49:53
#DewiJill #diagnosed #cancer #age #grew #fell #swoop
