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Turbulent Months
February 4, 2026

In this blog post, I take you through the past months and share the latest developments regarding my health.

As I walk out of the hospital, I notice that I find a certain sense of acceptance. The good conversation with the endocrinologist has clarified many things for me and gives me more confidence in the choice I have now made: surgery to remove the benign tumour in my head. This decision had been weighing on my mind for months. In fact, I had already taken a firm stance. I was not going to do it. And yet I walk outside feeling that maybe it actually is best to go ahead with the surgery after all.

The operation had essentially already been planned until I had a conversation with the neurosurgeon and began to doubt. In the summer of 2024, I had more or less fully accepted that surgery would have to take place. It felt like the only way forward, a way to see whether it could offer a solution to the fatigue that had persisted for more than a year without any clear explanation. I did not anticipate the neurosurgeon’s rather negative attitude. It was not an explicitly negative recommendation. The choice was mine, and if I wanted to proceed, the surgery could go ahead. However, her assessment was that she did not consider me recovered enough and would prefer to wait a few more years to see whether my condition might improve.

Completely confused, I returned to my haematologist with the question of whether there might be more going on. As it turned out, there was. It was not that she necessarily believed my symptoms were caused by this, but mutations had been found in my own stem cells, and she could not rule out a connection. Intervention was also important, so the surgery was put on hold. Instead, I began treatment in September 2024 aimed at supporting the donor stem cells and suppressing my own.

When I finished those treatments in May 2025, there was of course hope that I would start to improve afterward. That turned out to be quite disappointing. In June, my intestines began to cause intermittent problems, and in the following month the symptoms only worsened. Despite extensive testing, no clear cause was identified. Damage to the intestinal lining was observed, but why it was there remained unclear. Fortunately, from mid August onward, the intestinal issues largely faded into the background. They have not completely disappeared, but they are far less severe than they were during the summer.

When I had another appointment with my haematologist last October, I did not feel any better than in the years before. The fatigue is still there and interferes so much that I am largely unable to build a normal life. That conversation did not go the way I had hoped, and I previously wrote a blog post about it titled A Conversation with the Doctor.

By standing up for myself during that conversation, I am now able to begin an oncological rehabilitation programme. I have since completed all the intake appointments, and it will truly begin on February 16. I notice that I am looking forward to it, while at the same time feeling apprehensive. It is an intensive three month programme that not only looks at what you are still physically capable of and how to rebuild your condition, but also pays attention to the mental aspect and to nutrition. I am very curious to see what this will mean for my fatigue. At the same time, expectations are being tempered. Full recovery is considered unrealistic, but hopefully it will be enough to make everything more manageable.

Still, I noticed that a sense of restlessness remained. There is still no clear cause for my symptoms, and I find it difficult that the haematologist is so firm in stating that it is not related to everything I have been through haematologically. It leaves me feeling empty handed, because then what is the cause? In addition, over the past three years I have experienced so many vague symptoms for which no causes have been found, let alone solutions. For some time, I had sensed that the conversations were slowly shifting toward my other health issue, the benign tumour in my pituitary gland. Because of all the discussions in 2024, I had not become convinced that surgery was the right choice. It felt as though this option was mainly being suggested as a kind of distraction from all the other problems, which only increased my unease.

That unease led me to doubt even more. Would I end up stuck even deeper in the mire? The words of my haematologist about the issues with my stem cells did not help either. My chimerism had improved again and there were no longer any mutations, but we had to wait and see whether that would remain the case. I also did not understand why a chimerism level of 99 percent was suddenly considered acceptable, since the goal had been to eliminate my own stem cells altogether. Only later, when I revisited the subject, did I realise that I had made an error in my reasoning. At the time, however, I could not let go of that thought.

Now, about four and a half years after the diagnosis, I notice that I am also simply tired of it all. Sometimes it is just too much. Constantly having conversations with different doctors who do not always give the same advice, and as a patient struggling to fully understand everything. I have become fairly familiar with the medical world by now, but whether I truly understand and can fully grasp everything often turns out to be disappointing.

I therefore felt relieved when the doctors decided to consult with one another. I heard this in early January 2026 from a different haematologist than my regular physician. During that conversation, I was asked extensively about my symptoms and the difficulties I was facing. There was also doubt about whether my problems might still be partly caused by the haematological issues or the treatments I had undergone. That felt like an enormous relief. The disappointment was all the greater when I was called back a week later with the outcome of that consultation. My chimerism had improved slightly again, which was of course positive, other values were also favourable, and from a haematological perspective they saw no obstacle to surgery for the tumour. It was acknowledged that the surgery would likely do little for the fatigue, but that was the conclusion.

During that phone call, I already felt it was not doing me any good, and I completely shut down. Once again, the conversation turned toward surgery, and I felt unheard. Being told yet again that your blood values are good while you do not feel any better is deeply frustrating. That is why, last Monday, I went to the endocrinologist with a heavy heart, determined to say no to surgery. In the year and a half since the conversation with the neurosurgeon, I had not improved. In fact, I might even have felt worse than I did back then, and so surgery did not seem appealing to me at all.

During the open conversation with the endocrinologist, however, several things became clear to me. Whereas I had previously had the impression that she also had no explanation for my symptoms and was more or less advising surgery as a last resort, she now explained that medication side effects or elevated prolactin levels could also be contributing to the fatigue. She was also surprised by the neurosurgeon’s earlier advice. This surgery is performed on people in their nineties, so why would I not be fit enough? Now that things are haematologically stable, she actually wants to seize the opportunity to operate. The tumour has remained stable over the past year and a half, which is favourable, because it is still very large and further growth would make surgery more complex.

And so I ultimately left the hospital with a calmer feeling. In the coming months, I will first focus on rehabilitation. After that, surgery will likely take place sometime around the end of May or the beginning of June. I do not yet know the exact timing. First, another conversation with the neurosurgeon is scheduled, after which everything will be set in motion.

Of course, I hope that the surgery will enable me to lead as normal a life as possible again and that the fatigue will partially improve. At the same time, there is still the fear that it will cost me a great deal of energy, or that it will not resolve the fatigue at all. For now, I am trying to let that go.

All in all, there have once again been many developments. Not only have the past months been turbulent, I suspect that the months ahead will be as well.