F is for Fucked off

Yep, unfortunately one of the fears I had for today was that it wouldn't provide any conclusive information. I hadn't anticipated being dealt with by a doctor who has an unfortunate 'rest face' for dealing with cancer patients. No, he didn't look grumpy, quite the opposite, he had a jovial look. His default expression was a smile, which, in many circumstances is a big advantage and something to be proud of, but when you are dealing with someone who has a serious medical condition and is clearly not happy with the information she is getting, maintaining your standard smile doesn't cut it!

There was obviously miscommunication between Utrecht and Amsterdam hospitals which is (probably!) not that doctor's fault, but he could have dealt with it so much better. We were asking questions and looking for guidance, clearly frustrated and confused, and he offered us very little except to say that we needed to go back to Utrecht for chemotherapy before any alternate medication could be considered being used.

What we did manage to drag out of him was that the DNA mutation I have is very rare; something similar is seen in breast cancer but not in lung cancer and the potential treatment they are thinking of doing (after chemo) might not necessarily work in my case. In other words, it is quite an experimental situation. Great. He explained that the type of chemicals used in chemo nowadays are much better and have fewer side effects, or the side effects can be effectively treated/minimised by other medication. For example, hair loss is not a foregone conclusion (silver linings!). However, gulp, the success rate of chemo is 50:50. I didn't know that, I assumed it was much higher.

So, having spent all afternoon on it, we are no further forward. I'm just fucked off. I called my contact in Utrecht straight after the appointment, and explained the situation, she apologised and sympathised with us. She doesn't know what happened either but she has made us an appointment on Monday morning with an oncologist and we can discuss the types of chemo and make a schedule. I'm scared that it will actually start.. I was still hoping that I could avoid chemo and start with tablets.