Survivor story: Mandy had lymphoma

Mandy (25) was 15 when she was diagnosed with lymphoma. After a year of treatment, she was able to ring the bell. The cancer is gone, but the effects of chemotherapy remain. Mandy visits the LATER clinic at the Máxima Center once a year and is close to graduating as an oncology nurse.

‘My teachers had warned me that the second year of pre-university education would be much harder. But I did not expect it to be this difficult. I had always been a good student. Suddenly I could hardly keep up. I struggled to concentrate and was constantly exhausted. My general practitioner said it was probably just puberty. At least it was not glandular fever. I just managed to pass that year. I did not feel well at all. And then there was the itching, without any clear cause, all over my body. At night I scratched myself until my skin was raw. Doctors could not find anything again and referred me to a dermatologist. I was given tar ointment that I had to apply all over my body and I had to wear very tight pajamas. I barely slept at all.

This went on for two years. After a while, the pediatrician referred me to a pediatric psychologist. For the first time, I felt that someone was on my side. She said, ‘I really think there is something going on with you, you are not imagining this.’ Three days before my next appointment with the pediatrician, I developed lumps in my neck. I could literally see the realization dawn on his face. I had to go to the hospital immediately for tests. It was an intense week, because at the same time I had to take several exams. At the end of that week, I was cycling home when I saw my parents’ car parked near my school. They had been called by the pediatrician with news. We had to come in right away. At his office, we were told that I had lymphoma.’

Chemotherapy

‘A lot of tests followed immediately to check, for example, whether the disease had spread. X-rays of my lungs, an MRI, an ultrasound of my heart, abdomen, and groin. I was told that I would need chemotherapy. First, however, I had to have surgery to place a port-a-cath (PAC), remove a lymph node from my neck, and perform a bone marrow biopsy. Accessing a PAC is unpleasant. I was always glad my mother was there. Fortunately, they often left the needle in place if I had chemotherapy for several days, so it did not need to be inserted again.

The nurses really made my chemotherapy sessions enjoyable. That helped a lot and made it feel quite pleasant. It also helped that you are surrounded by other children, you see that you are not alone. My parents always came with me, sometimes my aunt or grandmother. We played games. It was secretly quite nice. I was tired, but I did not feel nauseous from the chemotherapy. And I was already used to being tired. After the first round of chemotherapy, I slept incredibly well. The sleep problems and the itching were suddenly gone. I thought, bring it on.’

Nerve pain and fertility

‘After my second round of chemotherapy, I started having problems. My legs felt strange when I tried to get out of bed. At the hospital, they told me I had polyneuropathy, damage to the nerves in my legs. That is something chemotherapy can cause, damage to the nerve endings. It affects everyone differently, and this is how it affected me. I still sometimes wake up with severe cramps or reduced sensation in my legs. I am still young, but sometimes I feel like an old woman. We do not expect this to ever fully improve. This is something I discuss at the LATER clinic at the Máxima Center, for example. They referred me to a neurologist at Erasmus and they carry out tests at every visit. At the LATER clinic, I keep seeing familiar faces, which I really appreciate. It is usually a full-day program, but I actually enjoy that.

Recently, I was told that the treatment I received back then can still be harmful to fertility. Some women experience problems when they want to become pregnant. That means I have to think about whether I want to have this checked or not. I may no longer be ill, but there are still downsides from when I was. It stays with you.’

Oncology nurse

At school, I followed an economics and social sciences track. But when I became ill, I became very interested in health care. That may be because I had such a positive experience. After my studies, I decided to take a gap year. I really needed time to recover, because I had always kept going, even during treatment. During my gap year, I took a part-time job at a nursing home and visited a few open days. I discovered that my academic track did allow me to enroll in a bachelor’s degree in nursing. By the end of that year, I was back in the classroom.

In my second year, I had to do an internship. Internships are assigned by the program, and I was placed in the oncology department of Ikazia Hospital in Rotterdam. Such a coincidence, as if it was meant to be. The people around me were quite concerned, and I did need to tell the team leader about my medical history, but I really enjoyed it. I therefore completed my work and study program in the third year at the same hospital, which also allowed me to see other departments. Still, I knew for sure that I wanted to return to the oncology department. That is why I went on to train as an oncology nurse. I am almost finished now, my final assignments are due next week.’