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Geri is the thyroid cancer specialist nurse on the Macmillan Support Line.
She checks this group and responds to medical or factual questions where members could benefit from an expert answer. You can also post questions specifically for her - she'll aim to reply within three working days.
I am writing (all be it with a sporadic Internet) from the RAI room in my hometown. I thought it might be useful if any of you are about to have Radioactive Iodine Therapy for the first time (like me) if you had any questions maybe I could answer them from here so it's all fresh? So what do you think?
If not its nice just to say hello anyway and I hope everyone is doing ok?
So far then. I had a total thyroidectomy (TT) on 24 th June, after being diagnosed with papillary thyroid cancer in May, by fine needle biopsy. My pathology showed that I had two main tumours in the thyroid the largest only measuring 13mm. I had 'micro deposits' which I think of like grains of sand throughout the thyroid gland, but as far as I can remember there was only 1 lymph node with a 3mm growth. I was put on liothyronine a day or two after the surgery and came off it two weeks ago in prep for yesterday's treatment.
After some blood tests yesterday and the normal pre observations. I was given 3000 mbq's of i131 at about 3pm. So far so good. One piece of advice I would give straight away IS, IF you should feel queasy definitely ask the nurses for something to take. I 'toughed' it out from 10pm last night and as a consequence felt pretty nauseous all night and morning. Nothing awful, I wasn't/haven't been sick but it was kind of like that headache and queasiness you get when you're overtired or travelling. However within an hour of taking the drug I felt oodles better. There are a lot of really sick people in difffent areas of this hospital, my attitude was I'm lucky I'm not having anything more 'full on' done hence not asking for help, but on reflection that was a bit daft, as I felt better so quickly.
The room is fine, obviously en suite and has a nice size window with a small view of some shrubs and fresh air. I've got a small tv, but I brought with me my knitting(I'm 31, but it IS fashionable now to knit, I PROMISE). I've got magazines and books and really folks, it's fine. You know you have to be in the room, but I'm keeping that feeling at bay. If I was home at the moment, I probably wouldn't be doing much different.
The toughest bit is the the food. I brought myself the snacks I've been having at home like raisins and bananas and also some cola. I've got mints to suck on, and my saving grace at the mo is some mcvities ginger nuts, which have been great with the nausea. Technically, I'm probably not supposed to have them because of the Low Iodine Diet (LID) but it's about the only thing I shouldn't be having. Waiting for the physicist to come round and gieger counter me this afternoon, and I'm hoping he'll be able to tell me how much longer I need to follow the diet for (the trainee didn't know yesterday) as the hospital didn't know anything more about the diet than 'no fish'. I too have been quite rigerous with the diet, and don't want to fall at the last hurdle, but the concoctions (bless them) that they are coming up with aren't helping the nausea. Plus I brought a mars bar in in anticipation for coming off the diet!
So ask away my lovely ones or just say hi, my superhero transformation is nearly complete!
Love Els xxx
Sounds like your having a fine time !
I brought 'Werther Originals' as it was the only boiled sweet in the shop pre RAI. Only to go to open them to find 'Made with Butter' stamped across the front lol. The nurses are good if you need anything youve forgotten (I sent them backwards and forwards a few times, once was for boiled sweets )
Make sure you get prescribed an anti nausea drug post RAI as the sickness didn't leave me for weeks. I got Ondansetron, very good that. I found eating made the nausea subside , strangely enough, I dont know if its the same fopr you, but grainery rolls seemed to mop up the radiation nicely for a while.
Hope it all goes well and keep us posted!!
All the best
As seems to be usual with peoples experiences of RAI etc. the information I was given regards to coming off LID was totally different ! As soon as I had taken the 'Glow Capsule' I was allowed to eat what I wanted ! Being a big lad the nurses loved this and made sure I had 3 cooked meals a day including a fry up every morning !
I took my favourite Diet Coke with me and several tubes of Pringles (I really did miss proper crisps during LID), oh and several Mars bars even though I rarely eat choclate. They even said that I could've taken some beers in with me ! Gutted as I even had my own fridge to put them in and an England footie game on the box one evening !
The hardest part for me was being away from my boys who I adore. There was no WI-FI so I only had my trusty Blackberry to rely on there. I used the time to do things I don't normally get the chance to do at home ! I sat down and read (2 books in 2 days) watched every episode of Band of Brothers and generally just chilled out ! The last day was the worst for me, I guess because I know I was waiting to go home !
I was also very fortunate not to really suffer with nausea, the only thing I really noticed was an increased thirst for a while (no bad thing as it helps your levels drop quickly the more you pee).
Hope all goes well for you in there !
Hope it's going ok for you and I'm thinking you could well be home by now. Hope you don't have any side effects and if they are they are mild. I had a dry mouth and bit of a taste but can't say it interfered with my enjoyment of food once i got out of hospital. My appetite was slightly dull, can't really call it nausea though. Afterwards i craved ice cream, very nice for the dry mouth. Had to be plain good quality vanilla or cornish though.
I've just come back from a music festival, 2 weeks and 3 days after RAI. i really enjoyed myself although i have to admit to feeling a bit more tired than usual.
My instructions told me to go for the LID options on the hospital menu. Very clever - there weren't any. And not eating meat either made it really tricky. The only people in the place who understood about the diet were the lovely catering ladies who really brightened the day. Tell them their coffee is fabulous (even if it's only OK) and they'll love you forever and pop back to make sure you're OK.
Once the tablet was swallowed I did relax the self imposed 'rules' a lot and I have no idea WHY they said to keep up the LID for another 3 days. By the end of day 3 I wanted Fish and Chips (with loads of salt and vinegar) but hubby was working and I didn't want to radiate on the chippy customers.
Hello Woollymammoth - like you I approached the diet issue pretty seriously. I reckon it's a serious process we go through & I'm happy to do whatever I can to get rid of those those remnants!
I had my 3rd RAI dose 8th August which was OK. What I find difficult is this period of building up the hormone levels again - I don't remember being so weary the other times. Having had a good search through the Mac site I guess my symptoms (dizziness, bloatedness, a terrible sense of fatigue etc) may be the combined effect of low hormone levels & the RAI. BUT, I do so wish someone had said - look you may feel X or Y, or even Z - it's probably a result of A, B & C etc, and you can do 1, 2 or 3 to help deal with it. This would help no end in dealing with the various symptoms that crop up, rather than trawling through the good the bad & the ugly on the net.
Welcome Minnie - good to see you here. I hope you feel much better very soon. Kazzy had her second RAI the day after you - I'm sure you can compare notes.
Just wanted to stop by and say thanks for the messages when I was in for my RAI. I'm afraid I got to the point where I was feeling pretty sicky so didn't get the energy to write again whilst I was in there. I was let home on the Thursday and thanks to Dean who recommended getting some anti sickness mess to come home with-that has been my saving grace. Happy to report that the nausea I think has finally subsided and apart from needing to sleep in the afternoons I'm doing really well. I've got my scan on Wednesday and next appt with oncologist on Novemebr 1st.
The toughest bit is not being able to cuddle up with hubby in bed yet and avoiding my 3month old kittens (bless em). They really don't understand and seem to have the 'ump with me now!
Much love and positive energy to all of you wherever you are on your road. I'm so lucky to have found you guys who have taken the time to write and wish well.
Love Els x
Glad you are out and getting better, hope the scan results are good and that all goes well from now on. I have my Oncology appt on Wednesday so hope to get a bit of an indication as to how things went then.
Thanks so much for posting this and for sharing your experience and how you were feeling. I am just home from my second op - TT, and waiting to see oncologist on monday hopefully then with dates for my RAI. I still feel so in the dark about everything that it is really reassuring knowing there's all you guys just a click away who are going through it or have just been through it before me.
One of my questions on my list is about the kittens....guess they are also not allowed to cuddle for a while, going to be so weird, Really hope you're doing ok
Hugs to you....
It's almost impossible to get an agreed response on the issue of pets. Some people argue that they are more at risk because they are small but I've been told that it's not the size of the animal that matters so much as its life stage.
Biggest exclusion times are for pregnant women (and let's say expecting kittie mums and doggie mums too) because the cells of the foetus are growing very fast and so very susceptible to damage.
Next come infants and young children - who are growing - but not so fast as an unborn child/kitten/puppy etc.
Finally adults whose cell renewal and growth is much reduced have the lowest exclusion times.
So my shorthand would be treat a kitten as you would a young child, a fully grown cat as an adult human and steer away from pregnant or lactating cats.
I believe you are correct Barbara. Pets are fine as long, like children they aren't growing. Ol.
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