Radioactive Iodine Treatment Quandary

Hey there Kit, 

I'm afraid I've not come across someone who has had a medical condition or a disability that has meant they can't have the RAI before. Part of the issue is that thyroid cancer is actually quite a rare cancer, and with the guidelines being relaxed a couple of years ago, even everyone who gets thyroid cancer, doesn't necessarily need RAI. 

I understand if you're not comfortable answering these questions, so please don't publicly if you don't want to, it's more just answer them in your head. But I was just wondering about a few things. Are you always in the wheelchair, or is it just when you're tired or for distances? You mention that you need help with lots of activities, but could you be more specific?

The reason I'm asking is that in the US they generally don't keep people in hospital for their RAI. Instead, they send them home and have them isolate themselves at home. This sounds like a better idea for you, as everything is set up at home as you need it to be, along with any aides you need to help you with day to day things. But if you have a partner or children, they'd need to be kept clear of you. 

When I've had the highest dose of RAI, I've still been allowed someone to visit for a max of 30 mins while I was at my most radioactive. They had to stay across the room from me, but they were still in the room. So the reason I was asking about what you need help with is that could it/they be done within 30 min periods, and do you have enough 100% no chance of being pregnant people that could help?

I can't imagine you'll be given the highest dose of RAI, so I'm thinking it'll either be a low or middling one. The hospital may go for letting you stay at home if you took the right precautions. So thinking it through, isolate yourself to your bedroom and the bathroom. Protect your bed with a plastic sheet to stop your sweat penetrating the mattress, then bin it afterwards. Use pillows you can bin afterwards. If people need to touch you to help you, get them some cheap scrubs or pinnies and gloves that can be binned once they're done, so no radiation is transferred to their clothes or skin. Food should be served on paper plates/bowls with disposable cutlery and cups so again it's all binned once you're done and doesn't go into your cupboards. And keep visits to 30 mins or less per day per person. They might want some sort of disclaimer form signed too, to say you and those helping you understand the risks, just so there's no come back on them.

I'd maybe suggest all of that to the nuclear medicine team if you think that's doable, and see what they say. If they still say no, then I'd def recommend getting in touch with the Butterfly Thyroid Cancer Trust and asking them which hospitals you could be transferred to to get your RAI, or what they might suggest. You'll find them here.....

http://www.butterfly.org.uk/

I hope that's been of some help, and I'm sorry I didn't have anything definitive to tell you. But my fingers are well and truly crossed for you. Please do keep in touch, and let us know how you get on!

Lass

Xx

Hi Lass,

I can’t thank you enough for responding so quickly and thinking this problem through so thoroughly.  I know you have wide experience of RAI treatment. I don’t mind talking about what I’m able or unable to do as it’s for all the right reasons. I use a wheelchair out of the house as I can’t walk far at all because of poor balance and coordination and also need to be strapped in ( oh the horrors). I manage with a stick, a shadowing husband and padded sharp corners around the house.

You can tell from this that my main problem is falling and being injured and this is because of seizures that aren’t fully controlled with medication and I have either no or only a couple of seconds warning. I lose body tone and crash. The postural hypotension is as bad and happens frequently when I stand from a sitting position.I’ve had many injuries. I know that being able to shower and wash my hair frequently is an important element of the treatment. I can’t shower at all and can only have a supervised bath with help in and out. A recent addition to the list is that my long-standing osteopenia has now tipped over to osteoporosis, following my recent DEXA scan and I had some IV treatment for that the other day. My bones being so brittle really doesn’t help my cause, humph.

I am brave enough to take risks - I’ve brought up three children while having frequent seizures - but I don’t bounce any more! I just can’t find a way of eliminating risks now or lessening them, without another human beside me. Even isolating at home - I need so much hands - on help with personal care. And the worry my poor family have to cope with makes me more than sad. The thought of another twelve hours on a corridor in A and E does too! ...

Reading back, I’m sounding very negative but actually I’m just trying to answer your questions honestly and realistically because you yourself know, first hand, how able bodied  I would need to be to receive this treatment and can only advise if you’re given the facts. I think there’s probably a big hint in my words- my husband has to shadow me. I will definitely be open with the nuclear medicine team and see what they come up with and contact the BTCT if they aren’t helpful.

Thanks again, Lass. I don’t find it easy to reach out for help but I think that after your kindness, I’ll find it a bit easier now. You have far more than your fair share of problems. After I see the team, whenever that may be, I’ll let you know what they say

Kit xx

Heya! 

Thanks for the details of everything you've got going on. I will say that at no point did I think you sounded down or negative. Yes it's a long list of kinda crappy situations, but your strength, determination, and sense of humour came through in between those facts. You sound awesome, BTW. Lol. There needs to be more people around with your outlook and mindest imo. 

You're right with the showering, you need to ideally shower twice a day and wash your hair once a day. The rooms I've been in here in Leeds have had a decent sized wet room with a rail in the shower, but no shower seat at all. Something to think on would be if there were a seat, would that make it possible for you to shower at home or in the hospital? It's the flowing water that's needed to rinse the radiation away, so sitting in a bath sadly wouldn't be the best. It's probably better than nothing, but ideally you need dousing down. Lol

I think the biggest issue, and the one the hospital will have the biggest problem with, is your fall risk. Tbh, there's not much to the room, and it's not massive. So when I've had my RAI I've spent most of my time in the bed. For food you shove the wheely trolley to the line, they put it on, then shove it back again. So the only time I got up was to go to the loo, grab water from the fridge, and put my dishes in the bin/wash them up. The problem with being in isolation and RAI is that you aren't regularly checked on and the nurses can't come in the room without protection on, and even then shouldn't touch you unless they absolutely have to. There is a camera in the rooms here, but not in the bathroom.

My first RAI I couldn't wash my hair because I'd recently had a sternotomy, but they said that just putting my head under the running water would be enough. That was a struggle, with the pain and the limited arm movements for drying and dressing. But I did it. And I'm sure that something could be done for you too!

I think the swing factor for isolating yourself at home would be the dose they want to give you. If it's the low dose then I can see them being more open to it. Especially if you can make the adjustments I suggested in the last post. That way, your husband won't be at such a high risk as he helps you with your personal care, and some sort of disposable thing he could wear while with you would work. So as boring as it is, and it is in the hospital too, stay in bed, have food brought to you, then get help where needed when you go to the bathroom to shower etc.

But yeh, if the nuclear medicine team are swithering then keep in mind the modifications I've suggested, if you think they'd work at your house, and that it's standard practice in the US to isolate at home - and I think you'll have a good case. Actually, thinking about it, there are even some people here who have been given the lowest dose and were sent home to isolate for that day and the next. So regulations are def relaxing. As they say, forewarned is forearmed. So hopefully you'll have enough info and ammo to go in there and work out a plan that suits both you and them!

Best of luck, and I'm always here if needed so shout up anytime! 

Lass

Xx

. 

Hi kit

Please don't feel isolated.  I will listen anytime.  This is all new to me and I'm waiting on RAI.  I see Lass replied to you.  She's great and has helped me today understand my blood results. 

Please talk to us about anything you are very brave.  Stay strong. 

Lots of love 

Your friend. PF

Hi again, Lass. Thank you for your lovely encouraging words. I hope I can make you feel good about yourself one day, just like you have me.

You’ve given me heaps of info and things to mull over- plenty to arm myself with before going to seem them at Stoke Hospital. I suspect that if I’m in with any chance at all of having the RAI then it will be if they think I need a low dose and can self isolate at home following all the safety procedures. There would be no camera in the bathroom in hospital and that’s where I am most vulnerable. That alone is enough to rule out treatment there. Not that anyone actually wants a camera in a bathroom! 

The thought of trying to rinse my hair having had my chest cracked is horrific. And you think I’m awesome!? lol

Thank you again for your help today.

Kit xx

Hi,

Thank you so much! Lass is special, isn’t she. I’m glad you found this group and the support you need at this time. It’s all less scary when there are other people to share experiences with. 

Take good care and stay strong too. 

Kit xxx

Excellent! 

I'd take a wee notebook with you, with notes jotted down in it to tell them so you don't need to remember everything. You'll be able to note down anything they say to you as well that way, in case there's something you need to do or if you need to get in touch with the BTCT if they say no. 

And yes, I figured the bathroom was your most vulnerable spot, which is why I thought I'd mention it's not covered. There's obviously a help cord to pull, but you'd need to be physically able to reach it as well as conscious! 

And yeh, can't say I'd recommend having your breastbone removed as a fun way to spend a few months. Lol. But hey, as I'm sure you're well aware, when needs must then you just get on and deal! My Mum and Dad took shifts to travel up and down the country to look after me for a few weeks after the op. Funniest thing was asking Dad to put my hair in a ponytail as I couldn't style it or do it myself. I think he'd managed to go 30 years never having to do it before, and he was clueless! XD

Lass

Xx