Last Friday I received THE envelope from the LUMC containing the date of the GON-injection.


No time to breathe apparently. This Friday the 27th I will receive the injection. But the letter only contained the date, no further information about what to expect, or what procedure is following after the injection. So I immediately mailed them my questions, hoping they could answer me before Friday.


They replied with a consult by phone, Tuesday the 24th at the end of the morning, providing me all the things I need, and wanted to know.


So yesterday was Tuesday the 24th, and we were both kind of nervous. Ramon took a break from his work, and sat beside me for some moral support , while we waited for the phone call.


But the call never came. I waited till one o’clock, and then called them myself, only to be answered by an answering machine telling me they closed at 11.30 hours.




Are you fucking kidding me?????


I was so angry! How could they just let me sit there in agony, anxious to ask my questions, so I would know what to expect before and after?


Again I wrote them an e-mail, to please-please-please answer my questions before the 27th.


Late that same evening I received a call from a nurse from the LUMC  I had contact with before. I was flabbergasted. Someone took the time and the effort to apologize and trying to help me, even well past her official working hours.


The only thing she could do to help me however, was to put me above the list of people to call back, in my doctor’s agenda on Thursday the 26th.


At least I will know what to expect before I will get the injection, but I rather would have known it a couple of days sooner. Even though the nurse who called me yesterday evening, told me not to be nervous, I can’t really control this feeling. Maybe it has something to do with the fact this actually is my last straw. The last option before I officially am screwed.


That certainly became clear to me last weekend, when I wanted to congratulate someone with her 40th birthday. While I was searching for a nice card to send, I got an ugly lump in my throat. Boy, did it hurt!


And oh my God, for a tiny little moment I gave room to my despair.


40 Years old….


Will I ever get to celebrate my 40th birthday? And if I do, in what kind of state will I be in? Do I really get to Parrrrrrtayyyyyy, or will I be in a hospital bed, hooked up to a machine with 280 seizures, or hooked up to the same machine, but granted to take my meds to suppress them as much as possible???


I started to cry so bad. And that shocked me. It became clear to me Ramon was right all along about me being in a deep state of denial the last couple of weeks. It almost started to annoy me Ramon cried so much, and gazed into the nothingness more often than less. But now I got a glimpse of what he was thinking of all of those times. And it physically hurt so much to cry, only over such a little detail, that I didn’t want to think about how much it would hurt to cry if I would give room to all my thoughts and fear. I think I would die of tears alone.


The worst part is, that I secretly have built a huge feeling of hope, even though I told everyone around me I didn’t have hope this would work at all. But that was simply to yell over my fear of having too much hope. I once had too much hope, and ended up me sinking into a black hole of the darkest thoughts anyone could have, and the biggest ocean of tears. But it’s out into the open now…. I allowed myself to have hope….a lot of hope this injection is going to work. I just hope that if this last straw is turning out badly, I won’t sink into the black hole and die of crying all of my tears.