On January 10, I heard that I still had a few weeks to maybe months to live, during which (mainly) physical failure symptoms could start to appear every day. The doctors hoped for me that I would respond well to the Dexamethasone and fortunately that appears to be the case. That could possibly offer me a few more weeks to two more months. It then occurred to me that I would be very grateful if I were given six weeks. I am now six and a half weeks further. Without noticing any failure symptoms! Six and a half weeks while maintaining quality of life, which is much more important to me than extra time. The pain I had can be taken away with medication, so that I can think, communicate, be meaningful and enjoy myself. In short: pretty much living the life I had being healthy. I don’t mind to accept the many side effects of the Dexamethasone for such a life.

It makes me think about that special concept of ‘health’. The World Health Organization (WHO) has stated since 1948 that “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”. That set the bar rather high. A research group, led by Machteld Huber, has proposed a new definition in a publication in BMJ (the leading scientific journal British Medical Journal) as “Health is the ability to adapt and self-manage the social, physical and emotional challenges of life.”. That makes me happy. I really like to keep that self management, which turns out to be completely possible. In that sense, I feel pretty healthy at the moment.

I got three new levers in my faltering plane: Dexamethasone, sleeping medication and Paracetamol. As I go along, I’m learning more and more how the fine-tuning of each lever works. The headache at the location of the tumors sometimes increases a bit and then there is also a bit of energy loss and nausea, which is all immediately under control with a small increase in the Dexamethasone. The result is that my plane will now and then fly a little lower, but that I can immediately stabilize the plane with those levers and then apparently fly straight for a long time again. This offers great opportunities for exciting, meaningful and pleasant days – without pain.

Tonight I’m going to have a delicious glass of wine to celebrate the beautiful six weeks that I have in the pocket and the tentative suspicion that there will be some more to follow. For those who want to participate remotely: tonight I make a toast to your and my health – of course in accordance with the beautiful formulation of Huber and her team!