RAI / isolation - my way!

[Shell83]

Ooooh where abouts are you?! I was told I can't have thyrogen because they can't get any! Had to go horribly hypo so many times last year (think my body is still a bit out of whack!) 2 weeks is a long time isn't it! I was lucky, the nuclear med team at concord are just beautiful & one of the blokes took my scan straight to the nuclear doctor and told me that it looked great, I walked out of there with a big ridiculous grin on my face 🙂 I felt a tad guilty (as you've no doubt seen, the waiting rooms in nuclear dept are full of people who mostly aren't looking/ doing so well.) Goodluck, have a fun weekend glowing alway 🙂

[chatterdog]

According to my endocrinologist, there was a worldwide shortage of thyrogen but it's recently come back into stock. I had a bit of trouble tracking it down, but got it in the end. So, hopefully you don't need it again, but if you do, you probably will be able to find it. I can't imagine having to go completely hypo, you poor thing. I think it does screw your body up for a while. I was at the RPA in camperdown and the staff there were great too. I had a HUGE room with windows all down one side, and of course didn't have to share with three others like after you have surgery. I live in Canberra now, not sure what the isolation rooms look like but fingers crossed I don't have to find out!!

[Shell83]

Interesting, I heard that about the thyrogen (something about the company who brought out the inventing company realised they would only profit 1m per year so decided it wasn't worth it, guessing they haven't been hypo!! I'd be happy to pay for it even! :) I don't have an endocrinologist yet, amazing how we were both treated at public nsw hospitals but its different. I was lucky to get my own room after my surgery, 6.5 hour surgery (i had massive lymph node spread so needed a level 5 or 6 neck dissection as well!) and I also was breast feeding my son still, he actually stayed in hospital with me so they gave me a private room with harbor bridge views.. Shame I was in too much pain to enjoy it! In hindsight a baby & recovery from that surgery were not a good mix but I didn't have time to wean him between diagnosis & surgery) he was fascinated with pulling on my drains (I had 3!). I had one big window for my RAI room (down in the geriatric ward of all places!!) and it had a massive spider hanging down.. He became my entertainment! I promised myself if I ever strike it rich I will fund a purpose built RAI centre, pure luxury rooms like a 5 star hotel, with enough room so that the isolated person can have a verandah surrounded by lush gardens, big spa baths....just little touches to make you feel less like a leper!! Oh and Icy cold water on tap seeing as I had issues getting water to me! Oh I can dream can't I?!

[chatterdog]

That would be amazing!!! It's definitely little touches like that which make a big difference. When things are so tough it doesn't take much to make you smile. I might actually volunteer to have yearly RAI if you set up those luxury RAI rooms, as long as it had a big TV and DVD library :D Wow, I can't imagine trying to nurse whilst recovering from surgery. You're a superhero! I had enough trouble not pulling my own drains or getting them caught in things, hehe.