Hi my name is Alessandro, after having intermittent pain in the lower skull for more than 6 months, I was seen urgently in A&E because of the palsy of my tongue. After that, two horrible months started, as different MDTs from different hospitals bounced me without proceeding to a difficult but doable lower skull biopsy.

I had to go privately and as soon as the diagnosis was (kind of) clear, the public hospital hospitalised and started chemo. The biopsy diagnosis initially indicated Burkitt (without genetic confirmation) but curiously enough haematology doctors didn't believe it, as they thought "I was too well for having Burkitt". So they started a less intense protocol (Pola-R-CHP), which they progressively adjust to a more intense one following the bad news arriving from my exams (CNS involvement, after which they adjusted to R-CHOP+). After they completed this treatment, however, also the haematology pathologists had to give up that I have Burkitt. This meant that the team informed me that the first cycle of chemotherapy wouldn't count, and I had to start a new more intense one (R-CODOX-M and R-IVAC), with which I'm now dealing. While I was kind of okay with R-CHOP, I'm really struggling with the R-IVAC now. And this is only one of the four cycles I'm supposed to have between here and the next few months.

I'm 38, I would say generally fit, have two wonderful kids and I'm expecting another one, due in February. Staying away from them is by far the hardest part of this disease, I'm trying to "accept and adjust" but it's not always easy.

One of the marginal but additional problems of Burkitt is that it is so rare that you don't find a lot of people who can tell you what to expect – now and later. Hence I'm posting here, without a real question, just hoping to start a conversation.