Some time ago, at the very beginning of February, like a couple of months, at the hospital my oncologist visited me. I was feeling pretty nasty and I could tell that he was not bearing any good news. First of all, he gave me the new medication with his hands shaking – Lorlatinib was a new drug for Sweden and we got it! Pretty good thing! He had good hopes for that, why the long face though?
Then he said that he needed to talk to me about one more thing. That now in my medical record there is a special mark, which means that I’m not suitable for being resuscitated. My body is so much exhausted and damaged by the illness that I won’t be able to take the procedure anyway, or something like this… I don’t remember because there was some ringing in my ears… Somehow I was so shocked and offended by this news that almost started to cry. I was worried that my parents won’t be able to come to say goodbye! Yes, by the way, he said, maybe it’s time for you to have your parents come.
Here comes louder, more ringing, more annoying, I can’t hear! I freaked out quite a bit. But It was probably one of the most important things he had to say that day. I needed to understand more deeply the severeness of the illness I have and it was the way to tell it for the doctor, since he couldn’t directly, as far as I understand.
I called parents that evening, of course, they freaked out too, and we started applying for a visa for them. For mum, it was the faster process and she came. And I was luckily at home already.
I was sooo happy to see her, you cannot imagine! All this time I had to tell her not to come – it was not easy for me; it was breaking my heart. And finally, we were able to meet and hug and be near each other.
But my happiness was fleeting. For a couple of days, I was feeling ok and we could catch up and bake muffins when on the third morning I woke up screaming… The usual stuff, pains in my back and the painkillers were not helping, we had to call the home service and in the corner of my eye, I saw my mum in the doorway, with a scared stare I didn’t want to see… Shit. Just two days, I thought… I was trying to stay at home as long as I could, but then the breathing problem started and I had to ask to go to the hospital. The scenario – me in the hospital and my mother seating on the chair and just watching me – was my nightmare %((( but there weren’t much I could do…