Thyroid cancer

A place for people affected by thyroid cancer to support one another, ask questions, and share their experiences.

RAI

Bdxgirl
Posted by

Morning all,

I’m just starting my second day of RAI, lasts 4 days here in France. I asked why since it does seem to vary all over the world and was told that the sewage system had a lower tolerance of radioactive matter! 

Anyway it’s not the most pleasant experience but no side effects from the iodine tablet as yet. Do they come later too?

Scintigraphy booked for Friday that will be reassuring.

Just wandering what i’ll fill my day with today, it seems to be stretching ahead of me! It’s not easy being alone with the staff just popping in occasionally!

Breakfast is on its way so i’ll get to say hi to someone:-)

Bdxgirl 

Lass
Posted by

Morning morning!

In my experience, I never had any side effects the day I took the tablet, but the day after I'd get a bit of a headache. However a couple of ibuprofen and paracetamol and it was gone. After that, nothing else other than boredom. My hospital keep us in for 4 days too, so it's not just country to country, but hospital to hospital.


I'm curious about the food you get there! France has such an amazing relationship with food, I would imagine - and hope - that the hospital food is of a high quality? 


As for filling your day... hmmm..... puzzles, quizzes, reading, a nap, a film or two, crafts, binge watch an entire TV series? I just recently watched all 5 seasons of Orange is The New Black. I can highly recommend it. Lol


Hope you find something to pass the time!


Lass

Xx

TopCat43
Posted by

Hi bdxgirl,

I’m also living in France.  Where are you having your RAI?  I had it in Lyon.  I‘ll send you a friend request as I haven’t spoken to anyone who has had/have thyroid cancer here in  France.

I didn’t have any  side effects from the treatment at all.  In fact wondered if it actually worked!  This was perhaps because I had a low dose.  Hopefully you’ll continue to have no side effects too.  Good luck for the body scan on Friday.

Alison x

Bdxgirl
Posted by

Morning Lass,

Nice to know there’s somebody who has had the same experience! 


I plan to do some art today, then I can stick it on the walls and brighten up the room, which is pretty grim, no shower, that has to be done at a designated time down the corridor! 


I do have my knitting and am binge watching American Horror Story! So I do have things to do, just need to get motivated to do them!


The food here is c..p! The french reputation certainly doesn’t extend to their public hospitals. I was in a private clinic recently and that was a completely different ball game. Fantastic 3 course meals and well catered to my gluten free diet.


Have a good day and thank you for your reply. 

Lass
Posted by

Yus! I've had RAI 4 times now, so I'm an old hand at it. Lol

Have to say, I'm not impressed that you don't have your own shower to use as and when you want. That's a right pain in the bum!


Have you anyone coming in to visit who might be able to bring you some edible treats at all? I know for me, the worst bit was definitely the food they thought edible. So I had a friend bring me in some supplies to see me through. Then I was prepared the next few times, and went in with plenty of snack things to get me through!


American Horror story is on my list to watch too, just haven't got around to it yet!


Lass

Xx



Bdxgirl
Posted by

Hi Alison,

I’m in Bordeaux and by coincidence we share the same name except I have 2 lls.

I have had a low dose too so that’s probably why I haven’t had any side effects.

I have to say that all the medical staff that I have seen have been fantastic and on the ball. I have a wonderful GP who reacted straight away when I told him I was having difficulty swallowing. What’s it been like for you in Lyon? 

They’ve just been to change the bed and are obsessed about whether I have had a poo yet:-)

Nice to know there’s a fellow compatriot in the same situation this side of the channel.

Bises

Bdxgirl
Posted by

Wow 4 times, are you ok? That seems a lot.

No visitors allowed here but I did bring a kettle and some chocolate! 


American Horror Story is great, a bit gorey. I’m just coming to the end of season 1, there are 6 seasons so perfect for binge watching!

Lass
Posted by

I'm one of the super special folks whose thyroid cancer decided to go on a trip around my body. Lol. So mine had spread to a lot of my bones, but the RAI seems to be working as the last one showed I'm down to 3 areas that glow - 2 vertebrae and a rib. I think they plan to give me another dose in November - and we're all hoping for no glow! Then it will just be a case of healing and getting my strength back, kicking the other cancer(s?) into touch, and I'll be right as rain. Lol

Interesting to hear you're not allowed visitors. Here you can, but they must stay on a seat by the door, while you are at the far side of the room. But yay for chocolate! Always a good pick me up.


I don't mind a bit of gore where it's called for and where it adds to the show. But when it becomes gore for the sake of gore, that's where I lose interest. I'm watching the new Lost in Space series at the moment. Very different to the story I know, but quite good.


Lass

Xx



TopCat43
Posted by

I live in Macon and had my thyroïdectomy at the hospital in Macon and then the RAI in Lyon.  Yes the medical staff have been great here too.  

There are a few differences that I have noticed in my treatment compared to what everyone seems to be getting in the UK.  For example, I was told that it wasn’t necessary to do the low iodine diet prior to RAI (I did it anyway in the hope that the treatment would be more effective).  I also didn’t have a scan the year after which includes RAI.  My follow up treatment has been a ultrasound of neck a year later and blood tests.  Interesting the differences in treatment between countries.

Alison x

Bdxgirl
Posted by

I was told not to eat seafood but nothing else here in Bordeaux. Also I have an appointment in 3 months with the endocrinologist. 

It’s intetesting how much the treatment varies from all over.

How are you doing now was the RAI successful ?

TopCat43
Posted by

Yes, all good now.  RAI seems to have worked thyroglobulin  is at less than 0,1.  Having another ultrasound in August.  Seeing endocrinologist once per year with blood tests in between.

Alison x

Bdxgirl
Posted by

That all sounds very positive. Thyroid cancer does seem to be one of the easier ones to deal with.

I’m just off for my shower down the corridor. Did you have to change clothes everyday or pjs, that’s what I’m in!

Chridster
Posted by

Hiya,

I had two showers a day and just stayed in the scrubs, my hospital was great and gave me two pairs each day. i'm just funny about putting clothes I've already worn on after I've showered.

How are you feeling?

Bdxgirl
Posted by

Hello there, 

Well i’m Just back from my shower so am feeling refreshed. It was nice to get out of the room even for a few minutes.

I only had a low dose so haven’t had any side effects apart from feeling a bit sick, nothing major. Thankfully I was allowed to bring a kettle in so I am now enjoying a proper English cuppa! With a little bit of chocolate on the side:-) it’s the small things that make all the difference!

tigerlilly13
Posted by

Hi Allison

I had my treatment in the UK  I had a more aggressive variant and am yet to meet another person with it  

Our follow up has been the same. I didn't have the RAI scan at 1 year just an US. Monitoring Tg or doing a stimulated Tg ( having thyrogen before blood test) is just as good as the RAI scan.

It varies from country the LID. In USA there is lots of restricted foods due to the food industry adding c@#p into foods compared to UK and presumably France. As studies progress the need for LID will change.