It’s not a competition, and nobody really gets to choose their hand. But even I know when I’ve been dealt a truly, truly garbage hand—not a single card connects to anything.
If you haven’t figured it out by now, my specialty is getting into situations or doing the exact opposite of what’s expected or desired—in almost every scenario. For instance, since we’re already talking about cancer (not that I had a choice), it’s better to have a "user-friendly" one. The kind that thousands, if not hundreds of thousands, of patients have had, and maybe even recovered from. And if you ask me—the kind where the radio-oncologist is a supporting doctor, not the lead guitarist.
All these complaints are because after almost a year in this mess, there was a brief moment of silence where we realized we actually knew nothing about my rights. It’s not just that there’s a lack of concrete information on Chordoma; everything with me is upside down—it’s "unmanaged bureaucracy."
We also realized that my family doctor was a pro as usual. From the moment they discovered what I had, he did two things.
The first and most important (which, turns out, isn't automatic)—he entered me into the oncological patient database. It’s a pretty large club, and definitely not one you want to be a member of. But that simple action made dealing with my health fund and National Insurance (Bituach Leumi) a bit easier. Don’t worry—the Tax Authority remains its usual self.
The second thing—from that moment on, for anything that didn't involve an Acamol or a band-aid, he sent me straight to the oncologist...
But wait, I don't have an oncologist!
I had quite a bit of bureaucracy to handle. The kind that takes at least two hours just to fill out the forms on the National Insurance website. Because I couldn't find an option for "Chordoma," I kept ending up back on the same page, greeted by that warning in bold red letters stating I hadn't filled everything out. After more than ten attempts and zero help from Google or tech support, I gave up. I decided to click on the cancer closest to my disease—"Sarcoma"—and hoped for the best (Quick spoiler: at the board meeting, the doctor laughed and said I should have just ignored it).
I don’t really know where I, and of course my amazing wife, found the strength to start digging through the National Insurance website and Google to discover some real bureaucratic gems. For example: anyone diagnosed with cancer is automatically recognized with 100% disability for the first year. In my head, at least, that meant no board meeting was necessary since all the documents were there—it should be a rubber stamp from here on out.
Or so I thought. Don’t worry—two days after submitting the form, a clerk from National Insurance called me (the fastest efficiency I’ve ever encountered in my life) to summon me to a board meeting. During the call, I’m naively trying to understand why. They have all the forms; everything is clear in advance. There’s no reason to bother me, a consulting doctor, and a clerk for a redundant meeting with a predetermined outcome.
After 10 minutes of "So you refuse to come?" from her and "No, I just don't understand why" from me, she stuck to her script: "So you refuse to come." I decided to end both our miseries, agreed to show up, and finally hung up.
At 3:00 PM, while still recovering from my second surgery, I found myself hobbling to the nearest National Insurance branch. At the security check, they were more interested in knowing if I had a lawyer with me than what was in my bag or why I could barely breathe.
Since it was late, the branch was deserted, looking like a desert from a Hollywood Western. The only thing breaking the silence was the grating loudspeaker reading out numbers in no clear order to rooms hidden from view. There's always that dilemma—to go to the bathroom and risk them calling your number. Pro tip: always go!
Here, I’d like to point out that not only is there no reason to get stressed about these boards (and later I’d discover some positive changes), but you also don't have to surrender to all their whims, like I did in the room.
There wasn't an extra chair for me. Both of them sat comfortably, while I (it was my first time) was stressed and stood there with my walker like a good soldier. I answered all their questions. Halfway through, my strength failed me, and I asked about a chair. The answer still amazes me: "You can go look for one, but it’ll be on your meeting's time."
I’ll cut it short and surprise you: in the end, there was indeed no need for the board at all. When I dared to ask why they brought me there when I could barely stand, they didn't even answer. They just smiled and waited for me to leave the room for the next patient. The doctor even felt a bit peckish and pulled out a sandwich so he wouldn't starve to death.
So, as I said, that was the stage where we realized we needed to start getting organized. we went to the "market" to find an oncologist.
We needed an oncologist who wouldn’t just agree to take me, but who knew what I had, understood the disease deeply, and maybe even had experience with at least one other patient.
"Don't swap a winning horse"—Tel Hashomer came to my rescue again. We found an oncologist who, in hindsight, turned out to be a good friend of my radio-oncologist from Ichilov. He also managed to handle my incredible sense of humor and my cynicism, which never stopped reaching new heights.
The oncologist also had a punchline (just like the radio-oncologist): that he would do everything to help, to navigate the complexities of the disease, and sometimes act as a rubber stamp for bureaucracy—but having him was good, if not critical.
What many don’t know is that with great power comes great responsibility... wait, wrong story. With an oncologist comes an oncology nurse, a social worker, and quite a few other professional services—exactly, or almost exactly, for the problem I have.
The volunteers who were really trying to help me with National Insurance quickly summoned the social worker. She couldn’t help me with that, but suddenly, other services were resolved the moment I registered for the department. The question of "Are you oncological or not?" finally ended. I didn't get a badge, but every form was officially signed off that I belonged. It’s strange, but even a disease needs a home, and so do people.
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