I'm going to try and be as honest as my fingers and mind will let me.
I just realised that I haven't changed my facebook profile picture since January of this year. It lead me to thinking why so? and the immediate answer is that I like to change it after I've travelled somewhere new. But the truth is travel hasn't really been feasible this year. 2019 has had immense ups and downs.. Where to begin?
A couple of good friends left work earlier this year, and I got to step into one of their shoes - I got promoted. I had been looking for such change for a while now as I had hit a wall in a sense that responsibilities had become dull.
I signed up to continue studies at OU.
My amazing boyfriend popped the question, and we're getting married next year.
I went to see ENT doctor as my referral from mouth doctor finally came through. Many tests and scans later ....
Tuned out that the lump that had been growing in my neck for years was cancer, or as doctors like to call it carcinoma. Whatever, I call it The C word as the other two arise awkwardness in people. But that's just the beginning! Thyroid cancer is fairly rare. There are four main types, papillary (8 out of 10 cases), follicular (1 out of 10 cases), medullary (1 out of 10 cases) and anaplastic (very rare, more aggressive 1 in 50 cases). While thyroid cancer is more common in women, that is the case only for the first two types. The other two affect men and women equally. The one I had/have is medullary. As the cause and location of the four is different, so is the treatment. However, the primary treatment is surgical removal of the carcinoma. So I was scheduled for that and it was done in May. Medullary thyroid cancer doesn't have specific treatment afterwards as it will differ from case to case. For me, they will monitor calcitonin and CEA levels in my blood forever and if/when they go too high they do something about it. According to the doctor this will happen relatively soon, but they can't know when or where. Then it's either further surgery and/or trial drugs that seem to be doing wonders, but then again, who knows? As the reason for my C is a genetic condition these new drugs should work as they target the RET gene.
So, yes, as it turns out I have an extremely rare genetic mutation (it is hereditary, however I am a de novo case as neither of my parents have it). It is called MEN2B (or MEN3) - Multiple endocrine neoplasia tybe 2b. MEN has different types, and, of course, I have one of the rare ones, because if I have a very rare genetic mutation, why not make it the super rare one? Well, funnily enough this explains ALL the weird things about my body now and while I was growing up. I won't go into them just now, but I would like to finish on a slightly more positive note.
Knowing that I have this rare condition has given me some sort of peace. It explains literally everything that has made me feel like an outsider all my life, and reading all those symptoms has made me feel like I belong somewhere. So through facebook I have found different groups and people; and even people with the same condition. Yes, they are across the world, but I have people to chat to that understand me, and I can understand them.
My now fiance has been my Rock, and my family have been amazingly supportive! ❤
Well this has been me procrastinating, back to the books!
Publish? save.
I don't make stuff up (aka sources)
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