Liquid Iodine Radiotherapy

I am due in on 28th July and also feel nervous about it all, have you started the diet?

I am also due to have RAI (pill form) on 13th July and it will be my second time @Westerdale.  I had the medium dose the first time and I was able to go home after only one night stay as my levels had dropped considerably, but would have had to return for a whole body scan the following day, so due to distance and transport arrangements decided to stay for the second night.  I am not the kind of person who likes being on their own either but it was fine.  I read, took some crochet in to do, used my phone and watched TV and the time passed.  This time I have to be in for 4 nights and I am not looking forward to it really, but it has to be done and just another thing we have to go through.  Just drink as much water as you can and shower regularly to get rid of the radiation.  I must say the room I was in was very nice, I had tea and coffee making facilities, a fridge, juice, biscuits, butter, jam, marmalade, cereals and milk were all provided.  I had a TV and there were lots of DVDs to choose from, there was also a CD player and jig saw puzzles.  The bathroom with shower was great and there were murals on the wall of the room and bathroom which were very pleasant and calming.  However, the remote control was missing so I never watched any DVDs and didn't realise that the DVDs went into the back of the TV and as I need subtitles I couldn't get these without the remote, or didn't know how to.  The CD player was nowhere near a socket so couldn't be played.  Also my meals were not brought to me a couple of times because I was forgotten, but there was a telephone in the room to ring if there was anything I wanted.  I left feedback and was told that these minor problems had been addressed, so I am hoping when I have my second treatment that everything will be fine and I will be taking some food in with me just in case.  They did bring me a sandwich after I complained at not receiving my food, but it was disappointing that I didn't get what I had ordered.  Best wishes for your treatment, hope it all goes well.

No not yet been given it 

Why having to go in again? 
thank you fir your reply. Has helped x

Hope all goes well. 
i am curious why a second lot as I thought it was only ever 1 lot of iodine radiotherapy 

Gosh it's amazing how advice varies from county to county!  I have been told so many different things, I will be having mine at the Royal Marsden in Sutton, apparently there are no tv's there at the moment but have been told I can take my ipad in but they wrap it in plastic.

x

I had a tiny nodule in my lung which has now grown to 2.5 cms x 1.9 cms and another 2 tiny ones appeared and showed up on the whole body scan after my RAI.  I had a further Ultrasound scan plus CT scan with contrast dye, then I had a lung biopsy to clarify whether it was thyroid cells or not, and it was, so they are giving me another round of RAI at the higher dose to hopefully reach them.  My uptake was good in my throat area last time, and my Oncologist thinks it may be possible that there was nothing left to reach the lungs, so we are trying a second time.  Some people have even more than 2 rounds, I heard of one person recently who was on their 5th round of RAI @Westerdale.

Hi Daisy7 ! I just had my RAI at Royal Marsden and it was fine. There are three rooms with ‘Dutch’ doors so you can leave the top open, if you’d like. I was in with two lovely people so we had a couple of chats over the 30-ish hours I was in. There is coffee, tea, a kettle and fridge provided but the TVs don’t work. My iPad worked just fine with the clingfilm on and showed no contamination the next day. 

The food was fine - better than other hospitals I’ve been in but I wouldn’t be checking if they’re on Deliveroo  At least we were never forgotten! Tomato and mozzarella salad was a pleasant surprise. Croissant at breakfast was nice and my neighbour rated the omelette quite well. Remember to select a lunch and dinner for the first day that’s still low iodine diet (I forgot and had to re-order! No cheese and biscuits on night one )

I did a little work and watched some shows on streaming - Wi-Fi was fine although they warned me it would be terrible, but I don’t know if it was just my room. 

The room had air conditioning which worked fine the first afternoon but then turned off. I was able to open a window, but the lady next to me said she had no way of opening hers - so definitely ask if that happens to you. It got hot!!

Bathroom was nice. I did wish I’d brought shampoo, though. I brought almost nothing. An iPad, book, charger, snacks, thyroxine (saved the last pills in a strip so I could leave it behind) and disposable toothbrush and toothpaste.

The room had a camera so I felt a bit silly but spent a fair amount of time pacing, stretching and just trying to be active. Staff said they see people doing all sorts and pay no attention!

I don’t mind being alone and didn’t find the room claustrophobic at all. Nice big windows, the half door and enough space for a bit of a pace and stretch. Small desk, chair, bed and wardrobe. Lovely staff. 

Hi Woofles

Thanks for the reply, it all sounds quite reassuring, can you take things out that you take in? Do I take clothes or are you just in a gown? Can I take food in? So many questions!

I was told there were no tv's, I am in this Friday and feeling quite nervous, do you know before you leave if you will need a second dose?

How are you feeling now? any after effects? Did you have to stay away from people for a long time?

I do hope that's it for you and you are making a good recovery

Vicky x

Hi Vicky,

I was only in for 1 night so didn’t bring any clothes. I wore some in and the. Changes into the pjs they provided. They also had a robe, but I didn’t use that. The pjs were big to fit a range of sizes but elastic waisted so fine for smaller people too. The neck opening was a bit big for me but nothing scandalous! I foolishly did t think about a bra so ended up wearing the same one the whole time. It didn’t really matter though as I just washed all my clothes twice when I got home, as they advised and that was it. 

So, yes, you can take home things even if they’re contaminated. My phone charger was (because I probably held it while it was charging) and they just said to leave it alone for a few weeks but also that the risk from it was very low. I wore my glasses the whole time and they came home with me on my face. They just said to keep things like that away from other people. 

You can bring in food. There’s a little mini fridge in the room.

They give you a gamma scan before you leave and you get the results of that in your follow-up appointment. I think you don’t usually know if you need a second dose from that scan alone. But the nurse was able to tell me that my scan looked good a week after my treatment. I have my followup call this week. 

i felt fine in hospital but have had an inflammatory response in my salivary glands since so a bit of pain, swelling and dry mouth, but nothing bad. I’m just a bit fatigued. 

i only had to stay away from my partner for the night after I came home and kids for three more days. And that was only close contact (sharing a bed, hugging), sitting 2m apart was fine.

 I’m popping a few photos I took off the room so you can see! Wishing you all the best! Ask all you questions  happy to tell all!