‘I am no longer sick, but I still experience the effects of the treatment. It continues to haunt you.’

Mandy shares: ‘My teachers had already warned me: the second year of high school would be much harder. But I didn’t expect it to be this difficult. I had always been able to learn pretty well. Now I suddenly had a hard time keeping up with the rest. I struggled to concentrate and was constantly very tired. Probably just puberty, said my doctor. It wasn’t mono, at least. In the end, I just scraped through. I didn’t feel great. What also came on top of that: itching. For no reason, all over my body. At night, I scratched myself raw. The doctors couldn’t find anything again and referred me to a dermatologist. I got tar ointment that I had to apply all over and wear a very tight pajamas. I couldn’t sleep at all.

‘You’re not crazy’

That went on for a total of two years. The pediatrician eventually referred me to a child psychologist. That was the first time I felt like someone was on my side. ‘I really think there’s something wrong with you, you’re not crazy,’ she said. Three days before I was supposed to see the pediatrician again, I got lumps in my neck. I literally saw a lightbulb go off in his eyes. I had to go straight to the hospital for tests. It was a tough week, as I also had to take a lot of exams. At the end of the week, I was riding my bike home when I saw my parents parked near the school. They had been called by the pediatrician with news: we had to come quickly. In his office, we were told I had lymphoma.’

Chemotherapy

A lot of tests followed right away to check, for example, if there were metastases. X-rays of my lungs, an MRI, an ultrasound of my heart, abdomen, and groin. I was told I would need chemotherapy. But first, I had to undergo surgery to place a port-a-cath (PAC), remove a lymph node from my neck, and do a bone marrow biopsy. Inserting the PAC is awful. I was always glad my mom was there. Fortunately, they often left the needle in place if I had chemotherapy for several days so they didn’t have to poke me again.

The nurses really made a party out of my chemo treatments. It made it quite enjoyable. It was also nice to be surrounded by other kids; you could see you weren’t alone. My parents always came with me, sometimes my aunt or grandmother, we played games... It was secretly quite fun. I was tired, but not nauseous from the chemotherapy. And I had gotten used to being tired by then. After the first chemo, I slept like a baby, and that sleep problem and the itching suddenly disappeared. I thought, bring on the stuff!

Nerve pain and fertility

After my second chemotherapy, I started having problems. My legs felt strange when I tried to get out of bed. At the hospital, they found I had polyneuropathy: damage to the nerves in my legs. That’s what chemotherapy can do: cause damage to the nerve endings. It manifests differently in everyone, but for me, that’s how it showed. I still occasionally wake up with severe cramps or less sensation in my legs. I’m still young, but sometimes I feel like an old lady. We don’t expect that to ever get better. This is something I talk about at the LATER clinic at the Máxima. They referred me to a neurologist at Erasmus, and they do tests every visit. At the LATER clinic, I keep seeing familiar faces, which is really nice. Usually, it’s a full-day program, but I actually enjoy it.

I recently found out that the treatment I received back then could still affect my fertility. Some women experience problems when they want to become pregnant. This means I have to think about whether I want to investigate this or not. I may no longer be sick, but there are still consequences from when I was sick. It continues to haunt you.

Oncology nurse

At school, I had an economics and society profile. But when I got sick, I found healthcare really interesting. Maybe that’s because I had such a positive experience. After my studies, I decided to take a gap year. I really needed to recover, as I had always kept going even during the treatments. During my gap year, I took a part-time job at a nursing home. I also visited an open day here and there. I found out that with my profile, I could apply for an HBO-V program. At the end of that year, I was back in school.

In the second year, I had to do an internship. The internship is determined by the study program, and I was placed in the oncology department at Ikazia Hospital in Rotterdam. So coincidental. It seemed like it was meant to be. My surroundings were quite concerned, and I had to tell the team leaders about my illness, but I really enjoyed it. I did my work and learning trajectory in the third year in the same hospital. This allowed me to see other departments. But I was sure of one thing: I wanted to return to the oncology department. So, I decided to study to become an oncology nurse. I’m almost done now; next week are my final assignments.’