Hi @pants,
I completely understand how you feel, though I'm in a slightly different boat.
My story: I had a TT back in 2009, while pregnant with my daughter & had the radiation therapy a couple of months after she was born. 2 years later my another dose as my blood levels were high (but I was "scan negative") - last July another, as my levels were up again and had been consistently rising & a PET scan showed a possible lesion in my hip. Turned out it was a metastasis of the thyroid ca, with multiple micro-metastases in my lungs. (Mmm, cancer in my hip bone and lungs? I nearly crapped myself - but at least it's thyroid cancer and not a whole new variety.) So, another, higher, dose last month, which may have knocked out the little buggers in the lungs BUT the hip may be bigger. Off for my first ever MRI soon to have a better look at that, as I'm not having other symptoms of that lesion getting bigger (eg pain or limited movement in the joint). I have regular neck ultrasounds (always clear) & less regular CT scans of various bits (neck, hips, lungs) & now a couple of PET scans under my belt.
ATM I'm tired of having scans every 6mth or more, and the last RAI131 dose made me fell awful for a few days - having to go off thyroxine for 5 weeks was much worse, mind you! 🙂 BUT it's all done to catch anything sooner than later, which I'd prefer to do considering I have a little one to look after (on my own for the last year).
Regarding my child, I tell her that I have an illness that means I have to go to hospital every now and then (for a few days) to get "special medicine" and that there are rules about this medicine (like staying 1-2m away for 1-2 wk after treatment). Luckily I have family who help me look after her then. I don't go into detail about the cancer - I don't even use the word, although I'm pretty sure she's heard me use it talking to other adults - and I tell her that I'll always be there for her (even if sometimes I'm scared that that's a lie). Most importantly, I try to keep it positive so that she's not scared by it - I feel healthy, regardless of what those pesky thyroglobulin levels are!
I understand your frustration - especially about wanting to know how it was caused. I had full jaw dental ex-rays in the 70's, now considered a possible cause; I ate very little salt in my 20's and 30's - could that have done it? Someone even suggested it was because my throat chakra was blocked from not speaking up for myself enough. Honestly, there's no way to tell for sure and your energy is probably better spent thinking what you want to do NOW rather than what happened then (I'm still working on this, mind you).
As for radically changing your life - that's up to you. I went vegetarian for a while, but I don't know if it helped. I'm trying meditation, as I think stress could be a contributor or trigger. If something feels right, try it, I say.
I really wish you all the best @pants (& I love your handle). This really is a journey. And I hope my story, albeit lengthy, has helped in some small way.
