Having struggled to find personal experiences and useful information on the internet about Radioactive Iodine Treatment for thyroid cancer post-op treatment, I decided to write up my experiences. I am hoping it will be of help to others who are about to go through the same thing, but don't know exactly what to expect.
Firstly and most importantly, let me start by saying that you can take whatever you want into your 'cell'. Yes it becomes slightly radioactive but you can take it home again when you leave, as it too loses its radioactivity. From my web searches I was under the impression that anything I took into my room would have to be destroyed when I left after my treatment (the pitfalls of Google!). This is not the case.
So here goes, I hope it helps someone out there:-
This is the assessment day. I met with Doctors on the Francis Fraser Ward which sits on the 2nd Floor of the East Wing of the hospital. This was to review my medical history, give blood samples and have a chest x-ray. I then signed the consent for the following days Radioactive Iodine Treatment and I was on my way.
If you haven't had a chest x-ray before, they ask you to change into a gown and you walk into a room containing the x-ray machine, you stand up against a panel with a cross and lines on it and the x-ray machine behind you moves and scans you. It only takes a couple of minutes and is completely painless.
The x-ray department is in the basement of the new King George V block which was supposedly completed about 2 years ago, although there seems to be rather a lot of construction work still ongoing! The photo below gives you an idea of the style they have adopted for their waiting rooms.
As I don't live anywhere near St Barts, I was put up in Gloucester House across the road from the main hospital that night. This compares with a University Halls of Residence or a large Youth Hostel and has a rather unwelcoming entrance with a multitude of buzzers and intercoms along with broken fittings and scribbled labels. Once you get in (we tried the 'accommodation' buzzer first and were then directed to the 'office' buzzer), you are inducted and provided with your own room which has a single bed, a wash hand basin, a fridge, a kettle with mugs, and the all important TV (but no access to WiFi). It does however have a second single bed which pulls out from underneath the main bed for if someone is staying with you. With two in the room it is a bit tight, but manageable.
There is a communal kitchen and day room containing a large TV and both male and female (2x toilets/ 2x showers) just down the corridor. There is also a linen room from which you can help yourself to extra towels/linen for the second bed if required.
It is all very basic but serves its purpose. There is a housekeeper there during normal working hours if you have any problems. It all seemed very secure; you either need keys to get into the building or you buzz a reception and then you need your key again to get into the accommodation level (level 6) and then you need your keys again to get into your room.
There is tea, coffee, milk, bread and cereals in the kitchen for you to help yourself to for breakfast, though there was a sparsity of cutlery. It looks like long term residents tend keep a set of crockery and cutlery in their room for personal use rather than leaving it in the kitchen and therefore available for multiple use each day.
After checking into Gloucester House we went to have a look around the area (which incidentally is Smithfields, The Barbican and Clerkenwell). Specifically, we were off in search of some lemon sherbet sweets!
Make sure you buy some sucky sweets, ideally something slightly acidic to get your saliva glands going just in case you get some pain in them after the RAI treatment. Also buy some squash if you are likely to get fed up with water because you need to drink as much as possible for a few days. And finally, get an all important pen (it will become clear tomorrow).
There are various shops around the area and pubs and restaurants, including fine dining ones if you choose, but having walked around for a good hour deciding on where to eat, we came back to West Smithfield, right outside the hospital, which has a couple of lovely looking pubs and a to-die-for coffee/cake shop mmm.
If you are looking for something to do there is an on-site small museum at St Barts, or the London Museum just across the road and of course St Paul's Cathedral. Both St Paul's and the Barbican tube stations are a few minutes walk away, giving easy access to the rest of London.
After a bit of a wait whilst a previous incumbent was relocated, I checked into Room15, Ward 5B on the 5th Floor of the King George V block.
The room was quite spacious (and somewhat more comfortable than the hostel) and was fitted out with a sink, a mini fridge and a dishwasher along with an en suite containing a WC, shower, wash hand basin and a macerator/sluice machine.
Nothing that is brought into your room leaves again until after you leave, so you have the sluice to dispose of all your food remains, paper towels and, if you are unfortunate enough to be sick, that also goes in there. The dishwasher is so that your collection of plates and cups don't start to smell after a few days standing around.
This room is lead lined with an electrically operated 3 inch metal door and a fixed Geiger Counter above the bed. Before you take the tablet you have to set your bed in the position you want it to stay. You can't then move it as it will throw off your Geiger Counter readings. When doing this remember set it in the position you want to sleep in i.e. there is no point setting it with the back part way up if you intend on sleeping on your front! Don't tilt it down too far either - I can tell you from experience that sleeping on a downhill slope just doesn't cut it.
There is no TV or any fixed entertainment at all in the room and all the WiFi's are locked. The hospital does however provide an entertainment system that you purchase credits for, either take some headphones with you or you can buy them from the machine at the same time as your credits. This entertainment system is a TV, radio, audio books and some internet access combined into a basic touch screen edifice. Wipe any images of iPad's from your mind or you will be sorely disappointed. Think more airport flight check-in touchscreen. There is no loudspeaker in the system so headphones are required, unless you want to read subtitles.
Once you are settled with everything you need everyone needs to leave the room and the doctor comes in with a lead container, containing the tablet which is just like a paracetamol capsule. The top is unscrewed and a plastic tube gets screwed into the container which picks up the tablet. You just tip this up and swallow with water.
On swallowing the tablet your door is closed and you have to lie down on your bed for 45 minutes so that they get a baseline graph generated by the Geiger Counter above your head. This creates a benchmark of your uptake of the iodine then after 45 minutes you can entertain yourself however you wish.
You are advised to drink lots of water to get you to use the toilet and flush any excess iodine/radiation through your system. Showering also washes off the radiation that comes through your body as perspiration.
A while later a menu gets posted under your door that you need to fill in for your lunch and dinner, this is repeated each day and is the most important reason for taking a pen with you!
You can have visitors but they have to stand in the ante-room which is a lobby area between your room and the main ward corridor. Visitors can see you through a little window and can talk to you via an intercom (when it works). Whenever any staff open the door they stand behind a special protective lectern
You are really now left to amuse yourself until your levels have dropped enough to be safe to be briefly let out for a full body scan.
Nothing really to say, just drink lots, go to the toilet lots and shower lots.
During the day I was contacted by one of the doctors to say my levels were dropping nicely so I would be called in the morning for my full body scan.
For your scan you are required to have a shower before they come to collect you and you must put on a complete change of fresh clothes that doesn't have any metal on, so no jeans or joggers with zipped pockets and no jewellery or underwired bras.
A porter comes to collect you and you are wheeled through the maze of basement corridors to a different block of the hospital for your scan, you can take a blanket with you.
You are then asked to empty your bladder one final time, that is your chance to remove your underwired bra if you wear one and then you go and lie down on the CT scanner table.
If you haven't had a CT scan before it is cold in the room to keep the scanner cool but the operator put a couple of blankets over me once I was lying on the table then the machine is set off. It consists of 4 panels that rotate around you and move all around you, the panels do come down close to your body but it isn't enclosed like an MRI scanner so it isn't so claustrophobic. After you have had the full body scan there is then a head and neck scan, I can only assume in more detail than the first.
You switch ends of the table you are lying on and place your head back on a neck support and they put another support under your legs. The machine is set off again with the panels rotating around your head again and the operator instructs you to breath in and breath out and hold your breath at different points.
In all I think I was in there about 1 ˝ - 2 hours before being taken to another room where they measured my radiation levels at different distances.
By day 4 my levels were low enough to go home, but as I needed to catch a flight home I needed to stay another night.
Although my levels were now low enough to leave, the nurses still don't come into your room although the doctors do, and your visitors can if they want. You can also leave the hospital if you want, but they ask that you return to sleep as that is when they do their monitoring with the Geiger Counter above your bed.
If you do leave the hospital they ask you not to sit next to anyone in the pub or café or wherever you decide to go and to keep away from children and pregnant ladies.
I was called in the morning for my levels to be checked at different distances again. This time I was walked by the porter through the maze of basement corridors and my radiation levels were checked again and had fallen sufficiently to be allowed to book my flight home.
On leaving the hospital you are given a yellow card with various dates on it stating what treatment you have had and after what dates certain things can be done. This must be kept on you at all times until after the latest date on the card.
There is also a chance that you will set off alarms on sensitive equipment at airports etc for several months after treatment so you are given a letter to take with you when you travel just in case, explaining what treatment you have had and stating that you are safe to travel.
If asked to summarise what to take and what to expect I'd say:-
- A few complete changes of clothes
- Sucky sweets
- Fruit cordial
- A pen
- Entertainment i.e. puzzle books, magazines etc
What to expect
- Talking about your current health and medical history
- Blood tests
- Swallow paracetamol size tablet
- CT scan
- Radiation levels monitored
In my experience none of it was painful and I was back home quicker than I thought.Go to Radiotherapy