It started so well. Yesterday finally able to visit my mother in Zaandam. The last time was months ago, but because the side effects of the medicine are now less severe, it was a good opportunity to make this trip. It felt good, and we came back home, feeling happy and satisfied.
And there the deception was waiting. In the form of new information about my treatment at the regional hospital. With two truly baffling observations. Now, more than 5 years after the operation in 2010, they declare not only that at that time it was already known that the removed GIST tumor was characterized as high risk, but also there was a good chance of recurrence and/or metastasis.
I actually fell off my chair! In 2010 they told us namely that the possibility of recurrence was extremely small, partly because it already was a rare tumor (it occurs in the Netherlands only about 200-250 times per year). And also that it was a tumor without metastasis and actually all of it was removed.
I remember well that, despite this reassuring statement, I still felt a bit uncomfortable. Because apparently the possibility that it could happen again was not completely ruled out, and I inquired about the possibilities for a periodic check. Especially because I had with that tumor at that time no physical symptoms at all, and also in a blood test there were no abnormalities detected.
But we were quickly reassured, for a time there would be periodic examinations (with ultrasound and x-rays). So I was reassured and even had a sense of guilt because it meant that I thereby made use of the health care while it was actually not really necessary. But it now appears that they lied to us all the time!
However, it became even more bizarre. They also explained in detail why the doctors had decided not to tell me that a preventive medicine (Gleevec) was available. Namely, because this drug had severe side effects and according to them the use should therefore be carefully considered.
In short, those arrogant bastards have, despite the high risk qualification and a high risk of recurrence and/or metastasis, and without any consultation, let alone participation, of the patient decided to denude me the chance of survival, or at least a longer life! And now even have the guts to say that even if this medicine was prescribed, I would probably have died anyway.
What now? Probably a legal process. With all the evidence already on the table, we therefore have a good case. Only, legal proceedings costs money. And additionally you need to engage an (independent) medical expert. You will get that money back back when a decision has been made in your favor, but that can be a time-consuming business (do I live long enough for that?). And since I lost my business and have no income anymore, we live of Marian’s revenues. Whereby this whole process already took more than 14 months so far and in the meantime our financial capabilities are depleted.
In short, I feel terrible right now. We first have to find a way to recharge and go to celebrate a long weekend with a few good friends. Then we’ll look further.