blooper-boy replied to your post “I start radiation in the next 30 days (well he said ‘within the month’...”
If it gets to much, just remind yourself that there is a real thing called 'the Cyberknife panel.' Say it outloud and remind yourself that humans are ducking strange and amazing creatures.
I am honestly in awe of my medical staff and the technology I’m being allowed access to, especially as I’m not a private patient and a lot of people decry our public system for being slow / poor and a lot of other things. (Unfortunately I guess that’s the ‘privilege’ of having a very rare disease, is that it is given more weight). I have not been treated ‘slowly’, and my treatment has not been poor.
But like, to have access to Cyberknife at all - whether they go ahead with it or not - when I know others in other states of Australia would have to fly interstate just to consider it... I am very fortunate. I see surgeons who respect me and my views, who listen to my opinions and one even asks me how my mental health is going (if you’ve seen surgeons or specialists before, you’ll know this is rare, lol). They never rush me out of their rooms in 10 minutes, and they discuss things with other specialists if they’re uncertain.
I mean it’s not all been a smooth ride, and one of the downsides is that they don’t have all the answers, because this condition is just too rare (which is why my Radiation Oncologist is vacillating on the treatment protocols for my condition, there literally aren’t any protocols, he like co-invented the Australian protocols for Cyberknife, lol). Sometimes I know more about my condition than they do, but they’re very humble about that. My Assoc. Professor Endocrinologist says this frequently: ‘You are teaching all of us all the time, and we’re fortunate, even as you’re not. We get to learn, and we will try and help you in the meantime.’
He also tells me to shoot him an email if I find any good academic articles about my condition, lol.
So, like, right? Cyberknife panel. And something called Cyberknife exists! There’s also something called Gamma Knife. :D The world of technology around illness improves all the time, and I am immensely thankful to live somewhere that allows me to access that mostly for free, because of public healthcare. I would be dead by now in another country, and I will always sort of...be in awe of the professionals, the technology, the country I’m in...
In some ways I’m unlucky, for sure, being 36 and looking down the barrel of what head/neck tumours can do to you is no lark in the park. But in other ways...yeah, the world is amazing place.
Tbh even after however many decades I still find MRIs fucking amazing like you are in a tube and they are LOOKING INSIDE OF YOU that is amazing. They are looking inside of me to help me and my life. If it was 50 years ago, 100 years ago, 150 years ago...
Well...
Perspective, no? :)
