RAI Completed!

Hi, I’m going for RAI on 4th if June and am starting to feel anxious about it.  I have been told I’ll be in isolation in hospital from Tuesday until Friday and then when I get home I have to stay away from my 9 year old for about 2 weeks ! The upstairs of our house is unused, I was planning living up there ( also a bathroom upstairs that no one else uses) 

starting my low iodine diet on Monday... how did you find it? X

Hi Sus,

I found the low iodine diet very bland to be honest. However with the helmans vegan mayo it helped jazz up a salad! I was also told that I would have to avoid contact afterwards but when it actually came down to it, they said I only had to avoid my son & husband 1 night. It depends on your level of radioactivity when you are leaving. They take regular measurements, 3 times a day and work out based on how much it drops by the time you can leave. I found that drinking piles of water and showering (it's an ultra powerful shower) twice a day helped reduce the level. It was right down on the morning of my leaving.

You don't get an awful lot of human interaction while you are in the room. a face around the door to ask if your ok or to take the radiation reading is all, but if you need anything buzz them or lift the phone that's in the room and they are there in a flash. I too was anxious going in and to me it sounded all very sci-fi being made radioactive! I didn't come away with any cool super powers or glowing in the dark lol.

I personally got sick from the radiation but I've been told not everyone does and I was just unfortunate. At the moment the sickness isn't too bad but my tongue & mouth are painful, feels like I've scalded it with really hot coffee or something, but it's tolerable.

The thing about being stuck in the room, or as I referred to it as my nuclear bunker, is boredom. Take things to do with you. The advice is you must leave everything behind you but I was told by the Nuclear scientist who gives you the treatment that it was ok to bring stuff home. (except the clothes you wear in the room).They can bag it up if need be. They put your mobile in a sealed bag, and you can still use it if its touch screen. There is no wifi so no internet usage.

You will be absolutely fine and don't worry about having to avoid your family when you get home as it may only be for a day or two like with myself. Good luck Sus & take something nice with you like chocolate as your iodine diet finishes later that evening after you take the capsules. (which are small in size).

All the best 

Maddie x

Hey Maddie, 

thank you so much for taking the time to reply.  It is good to hear about other people’s experiences.  I didn’t know about the vegan mayonnaise so I’ll definitely be getting some  

I’m I suppose you are told the worst case in regards to not being too close to your family after the treatment, here’s hoping I’m like you and the restrictions aren’t for too long !  It is good to know that the diet ends the evening after taking the capsule, I had thought it might be until I was discharged.  

I am so looking forward to the next part being over, this year has been hard always waiting for the next stage.  Fingers crossed RAI is the last stage

I hope your mouth feels better soon, must be hard to want to eat with it being sore.  

Thanks again

sus x

I completed rai in April and have my follow up appointment Wednesday. 

I didn't have the sickness but my throat did swell up and feel tender ( a bit like mumps) however by the next day it was back to normal. 

I would advise take lemon sweets and squash with you to give your taste buds a helping hand. 

Once you've taken the tablet you can eat whatever you want so take treats. You deserve it  x

I was able to access the hospital wifi so my phone was great company!!

Have lots of showers (and wee's !!) As it gets rid of the radioactivity. 

Good luck 

You'll be fine x

Well Sus,

Since yesterday my sore mouth & my sickness have gone and I feel great. So even if you are unfortunate to get any side effects they don't last very long it would seem. Like you it was the waiting for that next step that was the worst and I'm eager to get this 6 week appointment over with and hopefully told the RAI did what it was supposed to do and see you in however many months time. 

You will be fine & back home with your family before you know it. Hopefully that will then be it sorted for us both. 

Good luck and keep smiling  

Maddie x

Hey Maddie, 

Really glad the RAI went well and that your taste and such are back. Def good that it was just temporary. 

Hey sus, 

LID is dead easy if you're in the UK and an omnivore. Just cook from scratch and don't use packets or jars and you're good. Just watch the vegan foods, and check they don't have carageenan or other seaweed derivatives in them. 

Just as a note though, procedures vary MASSIVELY from hospital to hospital. Maddie, you're the first person I've heard of having their radiation levels measured more than once a day for example. Also, there was no phone in the room I was in. Lol

In Scotland and Ireland, you generally have to leave everything behind that you take in with you. However in England and Wales you can generally take home everything that you take in with you. But again, that generalisation varies from hospital to hospital.

The other thing that varies from hospital to hospital is when LID ends. For some it's as soon as you've taken the tablet, others it's the day after the tablet, and others it's when you're discharged and freed from the hospital. I took some chocolate in with me for after I'd taken the tablet, but I wasn't allowed it until I was home! 

And yes, they give you worst case scenarios for isolation timeliness, especially if you have kids. It's so you can make arrangements for either you or them to be elsewhere should your levels still be too high on release. Much better option than you being released with levels that are too high, not having made arrangements and panic phoning folks to see if they can take you or your kids. And of course, if they said it was worst case scenario then some folks wouldn't believe them or think they'd be OK, and so wouldn't make arrangements. So they often say it as if it will be fact.

Good luck on Wed Herbert! 

Lass

Xx