Hi Lass (and anyone else who’s interested!)
Went back to hospital today, 5 days after RAI and 3 days after discharge, to see oncology nurse for another radiation reading. Good news is that all restrictions have been lifted, I’m only slightly above natural background radiation levels. Great to have 4 year old twin grandsons climbing all over me again. Also great to move things back into the matrimonial bedroom, handle food and lift the toilet seat! Back to the gym tomorrow, followed by sauna and steam room - still living the retirement dream.
Next step is a 6-week follow up appointment with the oncologist and a programme of injections, blood tests and scans.
I can’t wait for my RAI to be done and dusted.
Best wishes x
Each hospital seems to do things differently and it also depends on the dose you are given. I was given the middle dose. I am in Scotland and had much stricter restrictions when I left hospital I basically had to stay 1 meter apart from everybody for 1 week. I then went back to hospital and they checked my readings and the restrictions were lifted.
Although it would be hard it would almost be easier being in hospital for at least 1 night than being in the same noise as the children but not being allowed near them.
Sounds like you're having the smallest dose there is if they're letting you out the same day then. So it sounds a precautionary treatment rather than a nuke it all treatment.
Now, the problem with going home.... well, there's more than one problem tbh. I'd suggest not going closer to your son than a meter, even though he's over 5. For those of us who have had higher doses, the rule is not going near kids who are under 16. So I think I'd prefer to be over cautious. Also, as you can't go near pregnant women, you can't go out in public as you've no idea who might be pregnant as you're walking around. Another issue is that the radiation will come out in your sweat, so anything you touch or anywhere you sit or sleep you'll leave trace amount behind. So I'd suggest putting a sheet over whatever you're going to be sitting on so that it can be tossed in the wash to protect your furniture. If you're a night sweater, I'd also get a cheap matress protector for your bed that can be washed or binned after those first few days. Same goes for anything you eat off or drink from. After you're done, put it straight into the dishwasher and don't let anyone else touch it before it's washed.
Those are basically the rules for Americans, as they're often not kept in hospital even on higher doses. So it might be a pain for a few days, and seem like a bit of a faff and hassle, but it's all just precautionary.
Regarding your phone and tablet/laptop, Most Scottish hospitals are really strict about restrictions. So anything you take in, has to stay there - including your clothes - and they're disposed of in hazardous waste. However in England they let you take things away that you take in, but give you restrictions with them. So any electronics can't be leant to friends or family, clothes need to sit in a cupboard for a month, then need to be washed twice before you can wear them again, and so on. So if they've told you to bring in your phone and tablet, then take them if you like, just don't let your son play on them or lend them out for a couple of weeks afterwards.
I hope that helps a bit?
Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh
Thankyou Lass and Runner for your replies, I really appreciate it.
You’re correct Lass, I am having the lowest dose so probably the reason I won’t be in isolation for long. Ive been told im having RAI due to the size my tumour was (3cm papillary). No lymph nodes affected, although there was evidence of vascular invasion, so thought I would have a higher dose but apparently chance of mets is no greater with vascular invasion, so I was told by the oncologist. I’m still not sure.
To be honest, I think I would rather just stay in hospital with none of my personal belongings until im safe to be out in public without restrictions. You used the word that I use.....faff. Just seems like a lot of faff. It will be impossible to stay 1 metre away from my son at all times, so planned on staying at a friends for a couple of nights but I’m getting anxious about being round her also and sleeping in her spare bed and contaminating it. I really am feeling stressed about it. It’s also the unknown....how long will I have the restrictions and what will they be!!! Questions that can’t be answered yet. Ive read some advice that you’ve given other members and taken it on board, especially drinking plenty of water. I was not given any advice at all by the radiologists, so thankyou so much. Do you think it’s worth requesting to stay in hospital?
Thanks again for taking the time to reply. Emma x
With a 3cm tumour, you don't automatically get RAI under the new rules. The new rules say it needs to be over 4cm to automatically be given RAI based on size alone. So tbh, it's more likely that you're getting the RAI because it was getting up there in size AND there was vascular invasion. Now, I don't have a medical degree or any sort of qualification, so I'm no more qualified than you are. However, I would say that with vascular invasion there is a higher chance of it having spread. Simply because, it's opened up one of the pathways it uses to spread! Now, in no way does that mean it has spread, just that I would think the chances are higher, even if only fractionally.
And yes, drink a minimum of 2 litres a day and for the first day eat some sour sweets like sherbert lemons or Haribo Tangfastics. The sweets will help protect your salivary glands, which probably aren't at risk at your dose, but it's an excuse to eat sweets! lol. Also, shower twice a day and wash your hair once a day.
Basically, you ingest the radioactive iodine and it's taken off to where iodine goes to and is needed in the body, and all of the thyroid cells left in your body absorbs it and begins to die off.By drinking lots, you're flushing the excess through your digestive system ASAP so it doesn't damage anything it shouldn't - which will also bring your radioactive levels down. Which is a point, before you go back for your scan make sure both bladder and bowels are fully emptied, otherwise it all glows! Then, as I mentioned before, it comes out in your sweat as well. So having the showers and washing your hair removes the excess from your skin.
If you do that, then it is VERY unlikely that at the dose you're getting, there would be any transference to your friend's furniture. Only thing you need to check is that there is absolutely no chance that she's pregnant.
But if you drink plenty and wash plenty, when you go back for your scan I have a feeling you'll walk away with 0 restrictions. I've had 1 medium dose and 3 top doses, and the biggest restriction I've had was I got out on the Thursday and I had to stay in my house until the Sunday.
If you're staying with a friend, then I say do that rather than hospital. Make it a girly few days, eat junk, chat, watch movies, do some pampering spa type treatments you'd never normally have time to do, and drink your drink of choice. Think of it as a break or holiday and not a treatment. lol. It was one of the weirdest things I've done, sitting in my hospital bed drinking Cava from a mug! lol
Cava from a mug
That’s exactly what we were gonna do....have a girly few days doing the things you suggested. I was actually looking forward to it cos, like you said, don’t get chance to do it that often in our busy lives. I then just started to get anxious about it all. I’m sure it will be fine and ive had to have a word with myself and be thankful im not having chemo. I bought my sherbet lemons this morning and I bought a toothbrush I can bin after (don’t know if I have to just made sense to me) I am of the same thinking as you about the vascular invasion. Makes sense in my mind that there’s an avenue for spread Oncologist says the chance is less than 1% so will just have to take his word for it. I was annoyed though as I wasn’t told about the vascular invasion at all. I read it on a copy of my GP letter.
Anyway Lass, thankyou once again for all of your advice. Very, very much appreciated.
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