#but sometimes that's the reality of living with a shitty rare genetic disability

[not-poignant]

Have you ever thought of moving abroad? If you could live anywhere, where would it be?

I have thought about moving abroad! It was all I wanted to do when I was younger (and we had no money and couldn't afford to go anywhere overseas). Back then I thought a lot about Canada mostly because it was cold, or New Zealand, because it was cold, lmao.

When I was able to travel, I thought about Melbourne (which isn't really moving abroad, but hey, it is a 4 hour flight away which feels like the same thing sometimes), and also Scotland, which I well and truly fell in love with. We even priced up real estate in Scotland and talked about making it feasible.

But...unfortunately, having an extremely rare genetic and incurable cancer condition means you almost always have to be very close to a hospital with specialists who actually understand your condition and manage it, and Scotland actually isn't known for being one of the best hubs in the world for the SDHD gene fault. On top of that, the NHS wouldn't be free for me as healthcare, and the yearly MRIs, thrice yearly PET scans and blood tests alone to monitor things are a lot of money if you're not able to access socialised healthcare.

There's only a few places in the world that would actually be kind of skilled enough and have the right kind of specialists for my disease, and that ruled out New Zealand, Scotland (especially the time spent waiting to access the NHS in the first place), Canada, and anywhere else I wanted to live. It's left us with other locations in Australia, but again, the only other place I really want to move is Tasmania, and anyone who wants treatment for this condition in Tasmania has to fly to Melbourne and back again just for consultation appointments.

To give you an idea of how hard it is to find specialists.

I am...miraculously lucky here in Perth. I almost thought we'd have to leave the state for a few months to find a specialist for my condition, and it turned out we lucked into two, and I have one of the best in Australia. Depending on the number of tumours I grow and what they're doing, I need access to the best neurosurgeons, vascular surgeons, endocrinologists, ENT surgeons, and medical and radiation oncologists who know what PRRT is, or gamma ray, or debulking. People with this condition die in places with specialists who don't understand. These tumours can cause a hypertensive crisis if you so much as touch them - biopsies have literally killed us, and many don't understand not to do them because when most doctors see a tumour they want to stick a needle in it.

I don't recommend having disabilities of certain kinds - particularly the kinds that need unique management (one of my tumours occurs in only 1/20,000,000 people to give you an idea of how rare it is) - if you have dreams of moving abroad. It was a pretty sad realisation honestly, because I'd be like 'but what if- oh, the tumours.'

These ticking time bombs basically mean I can never move far away from a hospital of any kind, and it's incurable, so you know, that's that pretty much done. No more indulging thoughts of moving abroad. But I'd like to visit Scotland again one day, when it's safe enough for immunocompromised people to travel freely. Which will probably not be in my lifetime. :/

#asks and answers #personal #yeah scotland is 100% top of the list #tasmania is second #glen and i have had long talks about the reality of shelling out #$800 just to get *transport* to an appointment #and like that's painful #what if i need 6 weeks of fractionated radiotherapy again? #god i hope not #the reality is that unless something else gets me first #i'm going to need chemo once or twice or maybe even three times as i continue to get older #my body is fragile and...watching disability systematically kill your dreams over and over and over again #is depressing #i have no happy answer for you anon #but sometimes that's the reality of living with a shitty rare genetic disability