Thyroid cancer

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

RAI with a toddler at home?

sexybabe1982
Posted by

Hi,

Just received a phonecall from Royal Liverpool confirming my RAI for 26th September with my clinic appointment for 19th. Always knew it would involve staying in for a few days (nurse said 3) and being careful after, but the nurse said that for 10 days after I shouldn't have any contact with my 3 year old (kept 1m away, no cuddles) and minimum contact for a further 10 days after that! 


I honestly don't know what I'm going to do! How did everyone else manage? My little one (3 year old) is incredibly clingy at the moment, and just wants to be with me all the time. When I'm at home, he only lets me give him his bedtime bottle and he wakes up at least once in the night, only going back to sleep if I get in his bed with him. I hate the thought of staying away from him completely, but just don't know how anyone with toddlers can keep them at arms length with no cuddles for 20 days!!!


Any advice would be great, thank you xx

Lindyapple
Posted by

Hi, 

I don't have any advice I've just been diagnosed with thyroid cancer and told to expect RAI. 

I have 3 children under the age of 8! 


My consultant told me I'd be kept In hospital for 10 days in isolation? 


Lass
Posted by

Heya,

I think your consultants are giving you worst case scenarios rather than the usual. I've had RAI 4 times now and none of my experiences are like the above.


You need to be on the LID diet for a few weeks before RAI and you'll need to come off your meds or get the thyrogen injections so your thyroid tissue will absorb as much RAI as possible.


So for me, I've always gone in on a Monday - with Thyrogen on the Sat and the Sun - then I'm out on the Thursday. And the maximum restriction I've had is that I couldn't have close contact with anyone until the following Monday.... And my dose was MUCH higher than the dose you'll be getting.


The top tip to ensure you're 'normal' when you get out? Drink a minimum of a litre of water a day, have at least 2 showers a day, and make sure to empty and evacuate your bladder and bowels as thoroughly as possible and as often as possible. 


Do that, and you will be out in quick time and able to hug the kids shortly after. But that's the key. Flushing the excess through your system as fast as possible.


Hope that helps.


Lass

Xx



Kat1044kat
Posted by

Hi 

I need to have rai was told need to stay in a led room for 3/4 days and not home until my levels are down due to having kids at home, every where is diffrent tbh I really don't know what to expect, beat of luck

Lass
Posted by

Hey Kat,

As I said above, the best way to get your levels down is to drink as much as you can. This flushes the excess radiation through your body much faster, which brings your levels down to make you safe to be around people of all ages ASAP.


But if you have any questions, please do ask and I and others will answer what we can as best we can.


Lass

Xx



FeedleFi
Posted by

Hi

I have 2 kids (4 & 7) and I have just had my first dose of RAI. I have a high therapeutic dose as annoyingly my cancer has spread. Not sure what your situation is?


I was given my dose on Friday morning and released from isolation in the hospital on the Monday. My initial reading suggested that I would have to be away from the children for 4 weeks. I was devastated. I went and stayed with adult family (with restrictions like double flushing the toilet, no close contact) and drank gallons of water and went back and had my readings done a week later. They had reduced which meant that I was able to see my kids the following week. I was away from them for 2 weeks in total. It was bloody awful. Don't forget it might not be as long for you if you don't have to have such a high dose. 


On the plus side, compared to chemo, RAI is very straight forward with v few side effects in my experiences. I know it's hard being away but it's two weeks out of your life. Be strong xxx

AnotherGoldfish
Posted by

I also had my RAI at Liverpool Royal when my son was 19 months old. 

He was at home with me full time, so I ended up having my retired parents come over from overseas. As they obviously had to stay in our house, I ended up going to stay in a hotel for three weeks. 


Like you I didn't think he'd understand why he couldn't come near, so it was easier to stay away for the whole time. In the end I watch a lot of to box sets and did a lot of crochet, and the time goes by quicker than you'd think.

Kag79
Posted by

Hi

I had my RAi a few weeks ago. I went in on a Wednesday was home on fri could see my 19 month old on Sunday but only for a couple of hours at a time and was completely restriction free by the following Monday. The advice given by the lovely people from the forum was right. Drink as much water as you can! I agree that the nurses tend to give you what worse case scenario. 


I think this really is the worse bit of the whole treatment. Not so much the RAI itself but being away from your family when you are so emotionally fragile and probably more aware than ever that every day counts. I hope you are back with your little one really quickly xxxxx

Kag79
Posted by

Just to clarify. By the following Monday I mean five days after the RAI. I have never drunk so much water !

tigerlilly13
Posted by

Hi 

From what I can see over the past 4 years on this site is that the isolation and restrictions vary between hospitals.

I will give you my experience. 

I arrived at the RMH at 9am. I was checked in and brought to the iso rooms area. There was 3/4 rooms together at the end of a ward. The lady in the room beside me was lovely and having a chat broke up the day. There was also a tv in the room and i had my phone and laptop with me. I took old pj and cheap clothes that i left behind 

At midday i had my RAI tablet. Non adventfull. Each morning and evening we were scanned for our radiation levels (which i believe dosent happen in all hospitals). I had a shower and pee'd before each one. I challanged myself to drink 4 ltrs of water/cordial a day to make myself pee as much as possible i also showered at least twice a day. I also had lemon drops to help clear saliva glands.

I honestly can't remember if i stayed 2 or 3 nights but on the morning of discharge i had my WBS.

My restrictions were based on how quick the radioactive material was being eliminated. From discharge my restrictions ended after 2 days. I did challange this as at the time i worked in a neonatal unit with tiny babies and was cleared to go back to work. I couldnt go back for other reasons but...

I also got a card for when i went through airports as the RAI thats left in the thyroid remnants may set off alarms. Much to my disappointment even flying a week later i didnt set off any alarms :-( 

I guess if you are worried about the restriction times ask the team how they come up with the times. I know in the marsden they are individual but some hospitals appear to use standard guidelines. 

Hope this helps.

AnotherGoldfish
Posted by

Things may have changed as my treatment was just over 2 years ago, but Royal Liverpool didn't do scans to see how much radiation was left.

sexybabe1982
Posted by

Thank you so much everyone for your replies!! It really does feel like it's going to be the worst part of all the treatment so far, as even after surgery I was home after a couple of days and able to hug my little boy!

Am just hoping that they gave me worst case scenario and as many of you have said - if I can drink loads and flush it out quicker it might not be as bad as they say! I HATE drinking water with a passion, can't stand it, but hopefully as a cordial I'll be able to get it down me!!

Will hopefully know more at my appointment Tuesday! Thanks xx

clareab
Posted by

 Hi 

I totally understand how u feel. U can not share a bed after that's a big no as ur not allowed to with adults. I had my rai last June and my little girl was only just 2 very clingy and always wanted me. I had 2 older boys of 5 and 8 and wasn't allowed around them either. The only choice I had so not to share beds with husband or be near kids was to stay at my parents for 2 weeks post rai. I could be near the older ones sooner bug still not spend anymore than an hour near them at a 1m distance. Could depend on how much rai you are given as well. The way I looked at it was was better to have rai and no I had done everything possible to get rid of anything still there than to always worry about what was lurking in my neck! Hope u find a solution that ur happy with.

sexybabe1982
Posted by

clareab

 Hi 

I totally understand how u feel. U can not share a bed after that's a big no as ur not allowed to with adults. I had my rai last June and my little girl was only just 2 very clingy and always wanted me. I had 2 older boys of 5 and 8 and wasn't allowed around them either. The only choice I had so not to share beds with husband or be near kids was to stay at my parents for 2 weeks post rai. I could be near the older ones sooner bug still not spend anymore than an hour near them at a 1m distance. Could depend on how much rai you are given as well. The way I looked at it was was better to have rai and no I had done everything possible to get rid of anything still there than to always worry about what was lurking in my neck! Hope u find a solution that ur happy with.

clareab

 Hi 

I totally understand how u feel. U can not share a bed after that's a big no as ur not allowed to with adults. I had my rai last June and my little girl was only just 2 very clingy and always wanted me. I had 2 older boys of 5 and 8 and wasn't allowed around them either. The only choice I had so not to share beds with husband or be near kids was to stay at my parents for 2 weeks post rai. I could be near the older ones sooner bug still not spend anymore than an hour near them at a 1m distance. Could depend on how much rai you are given as well. The way I looked at it was was better to have rai and no I had done everything possible to get rid of anything still there than to always worry about what was lurking in my neck! Hope u find a solution that ur happy with.


How did your little ones take it? Did you explain it to them? I'm so worried that he's going to think I've just left and abandoned him! He was ok during my two ops and after but incredibly clingy. Just hate the thought of him thinking I've left him!!

AnotherGoldfish
Posted by

I would FaceTime or video call with my toddler each day. I also bought him a special teddy bear to give him before I went, but that made me feel better more than him I think.