After a period of persistent fatigue, I visited my family doctor on September 7, 2021. Due in part to my pale appearance, she did not hesitate for a moment and immediately referred me to the emergency department at UMCG in Groningen. The following day, after numerous tests, I was diagnosed with ALL, Acute Lymphoblastic Leukemia, and I began treatment with medication and chemotherapy.

After several weeks, side effects from the medication caused me to develop a psychosis. When the medication was restarted, a second psychosis followed a few weeks later. Shortly after that, I was admitted to the ICU with pancreatitis, caused by an allergic reaction to a specific type of chemotherapy.
After a few days I was able to return to the ward, but due to everything I had experienced in just a month and a half, combined with severe fluid retention, I was completely weakened and bedridden.

Following a period of rehabilitation and new treatments, I was able to stay with family for a week in early December 2021, before being admitted again for another treatment cycle. Unexpectedly, I was discharged the day before Christmas. After spending the holidays with family, I moved into a temporary apartment within a supported living group, as circumstances prevented me from returning home.

After multiple at home treatment cycles and outpatient appointments, I was admitted again in March 2022 for a stem cell transplant. After three days of radiation therapy, twice daily, I received a transplant on March 24, 2022, using stem cells donated by one of my brothers. This was followed by the final chemotherapy cycles and several weeks of recovery. After nearly a month in the hospital, I was discharged.

A period of rebuilding and recovery followed, and I was told that I was in remission. In August 2022, I cautiously began working again, returned to exercising, and started building toward a new future.

By January 2023, I was working nearly 80% again with adjusted duties, mostly from home and partly at the office. At the same time, I was actively searching for my own place to live, exercising twice a week, and slowly continuing my recovery.

During this period, problems with my stem cells became apparent. Initially, the donor cells had completely taken over, but my own stem cells began to return. To monitor this closely, I had to undergo a bone marrow biopsy every six weeks. I started experiencing fatigue, but assumed I was simply asking too much of myself.

In mid February 2023, another setback occurred. Against all expectations, I developed an infection and was hospitalized with meningitis. Fortunately, after three weeks in hospital, I was able to return home.

Recovery after that was slow, and I was only able to work a few hours per week. The chronic fatigue became increasingly pronounced.

Despite these setbacks, my search for a home continued, and in May 2023 I received the keys to my own apartment, within walking distance of the hospital. It was an ideal place to continue working on my recovery and future.

Because my recovery did not progress sufficiently, I was declared 80 to 100% unfit for work in August of that year and became fully homebound. A year without improvement followed, marked by recurring check ups and bone marrow biopsies.

In August 2024, the next setback occurred. Not only had the proportion of my own stem cells increased over the course of that year, but abnormalities also began to develop within those cells. The fear was that without intervention, I would become ill again, this time not with ALL, but with AML, Acute Myeloid Leukemia.

At that point, we were actually preparing for surgery to remove a benign tumour of the pituitary gland, a macroadenoma. I have likely had this tumour since my early teenage years, but it was only discovered when I was 28. Because I continued to struggle with fatigue and certain hormone levels would not decrease, there was hope that surgery could provide relief. Due to the complications with my stem cells, we decided to postpone the operation and instead begin treatment aimed at restoring the donor stem cells to 100%.

Between September 2024 and May 2025, I received a total of seven cycles of azacitidine, a mild form of chemotherapy, and five donor lymphocyte infusions, consisting of donated white blood cells. During this period, the donor stem cells gradually increased again, and at present everything is stable and under control.

Unfortunately, there has not yet been any lasting improvement in the chronic fatigue. In mid February, I will be able to begin oncological rehabilitation at Beatrixoord in Haren. This is a three month programme consisting of physiotherapy, occupational therapy, support from a dietitian, and psychological guidance.

It has also now been decided to proceed with surgery for the benign pituitary tumour. This will likely take place around the end of May or the beginning of June.

This is my story in brief. In future blog posts, I will share more about my life after a cancer diagnosis, my experiences, and how I am doing now.