Monday, February 18, 2013

Radioactive Iodine Ablation... just like a weekend camping!

This latest offering comes to you from the lead room at the John Hunter Hospital.  F1 Room 30 is the place to hide if there is ever a nuclear accident.  It's a biggish private room in the orthopaedic ward, right down the end of the hall so no one walks in mistakenly while you are radioactive.  Double doored, air lock style. For those of you reading for the first time the quick version of what lead me here was April 2012 found a lump in my throat.  Diagnosis and surgery found a rather large malignant tumour called a Papillary Carcinoma (Hurthle Cell variant) but it was commonly know as Mr Lumpy Bump.  So he got whipped out in two separate operations and that lead me to this latest phase of treatment known as Radioactive Iodine Ablation.  Or 'newking' as it became known.   It could also be known as cruel and unusual punishment, but that is more an indiction of the tastiness of the food than the treatment itself.   Naturally I had read up on all the side effects, but as I type this (Saturday evening) I've been spared.  So I'll go back to the beginning and finish this off when I get home, with photos of course!   Hopefully you will enjoy the read.

Prep Day 1:-  Prep injection of Thyrogen at the John Hunter Hospital. The injections are horrendously expensive, but Medicare picks up the bulk of the cost.  Later that night I was pretty crook with the standard, run of the mill, written on the side of the box, side effects.

Pre Day 2:- Same as day one.  Lots of laughing as I get jabbed again.  The two nurses that administered the Thyrogen where both riotously funny.  Well they were jabbing a bloody great needle into my rear end at the time.  They held all the power.  Strangely NO side effects on night 2.

Radioactive Day 1:- Up at stupid o'clock to be at the John Hunter for 8.30am blood tests.  Of course the forms written out 3 months ago had something written in the wrong column and staff were hesitant to assist. So I took matters into my own hands and rang the Nuclear Medicine section. They were great.   Sent a staffer down to correct the error and pushed me up the line with an URGENT request.  The vampire taking the blood obviously had her day jobs confused because she thought she was still at the vets and used a syringe suitable for a pit pony on me.  I never bruise from blood tests.......except today! OUCH!

After the vampire had her chop I was sent away for a few hours, which was handy as I had not packed my bag and I needed to take a swift detour to the Apple store as my MacBook wouldn't recognise my Dongle.  They, unlike the blood collection assistants, were totally awesome and got me online in short time!

Back at the John Hunter at noon with sister in tow.  We met the Doc and had a chat, went to admissions and signed up and, as you do at the John Hunter, run into someone you know!  Finally made our way to F1 and ran into someone else we knew, before being shown to the "suite".   Suite MIGHT be overstating it if you were looking for some tourist authority stamp of approval.  It contained a bed, 4 chairs and an ensuite that had seen better days.   We sat for a while enjoying the ambience. There would have been a delightful bush view, if you could see through the inch thick layer of dirt on the windows (outside). Of course the windows are locked shut as breeze is bad..apparently.  Kinda makes every window having a fly screen irrelevant.    But still I prefer the JHH spend spare dollars on more staff and better equipment than window washers.  Nola left and I just hung about waiting.

2pm Doctor Tim turned up with two other blokey looking blokes with a stainless steel wheely tray and a sneaky looking canister on top.  Introductions all-round and pleasantry exchanged I knew these dudes were about to make me very sick and very radioactive.  We went thru all the safety stuff we had to go thru including DON'T LEAVE the room and if you are going to spit it out.......aim it in THAT direction!!! Humourously that was the direction Dr Tim was standing is so we joked about was there time to paint a target on his shirt so I could get a score if my aim was spot on.  Len and Nick went thru the process in fine detail.  Who would do what, what I could and couldn't do immediately after being given the capsule and we did three dry runs, just to get it right.  When the time came to actually take the capsule I did two things I was told NOT to do.....  I looked at the capsule instead of putting it straight into my mouth and when I bit down on it I heard it crack, but I expected it to break in half and it didn't.  So I kept trying to break it in half and momentarily opened my mouth.  Len knew I needed some help so he told me he had heard the crack and to now swallow.  I'm glad he said that or I'd still be rolling that capsule around in my mouth now!!!  Two big glasses of water washed it down and the 3 blokes couldn't get out of the room fast enough!!!  I was glowing!!!

For the next four hours I had to eat lollies. Hell job but someone has got to do it!!  Yeah, NO!!   Being diabetic is was a bit of a challenge, but if I didn't my salivary glands would get fried.  So I ate Fruit Tingles and let me say if I never taste another one, it will be too soon!!!   I washed them down with 4 litres of water and something resembling food.   It must be difficult to feed every patient in this big nursing hospital and they do their best....... but dinner at 5pm is actually really afternoon tea!!!  It was chicken with a tomato and onion sauce, pasta and carrots.  Dessert was sago and that was delicious.

So I had my first of many many showers and headed to bed with a DVD playing on the MacBook.
Old Man Sleep unfortunately didn't realise I was in a different bed and avoided me.  Probably the sugar hit and going from a super luxurious brand spanking new bed to a tiny metal bed with a mattress made of something resembling crushed bricks didn't help the cause!  2.19am was the last time I recall seeing the time.   The door has a sign on it saying how long visitors can stay for.  Today visitors were allowed to stay a total of 4 minutes.

Radioactive Day 2:-  5.55am!!!!  Mmmmmmmmmm  not best pleased AND a headache to boot!  Well I drifted in and out of sleep till breakky arrived at 8.30am and it was a welcome relief.  Dinner at 5pm, breakky at 8.30am, that a HUGE fast to break!  Try as I might I can't shake the headache so it is back to bed with some painkillers.  My sister woke me up at 10.30 with a rescue pack of popcorn!   Last night I was craving chips or popcorn and today she delivered.  Unlike staff she has no issue walking into the room.  I can understand it though.  The nurses and food porters get this every weekend and I can totally understand they need to keep themselves safe.  Some open the door all the way and will have a short conversation.  Others open the door and hide, they talk thru the crack.  Plenty of people to talk to though. My phone is going off like a frog in a sock!  Nic called from Perth to tell me he has moved off base and found...IKEA!  That was great call.

The rest of my day was spent on the internet, reading and I got a great surprise when flowers were delivered in the afternoon.  My niece Rachel sent them and they were lovely!

The menu lady brought only bad news.  Just about every meal was swathed in gravy and I'm not a gravy kind of girl.  Oh well, only a few days, I'll be right!

As the evening wore on I was chatting on Facebook when I realised I was running out of credit on the dongle.  DRAMA!!!  I had no idea how to recharge it and every number I rang was "not available" as I was ringing from a non Telstra phone.  I was getting pretty cranky.  90 minutes into my quest I found a number I COULD call and spoke to a woman who couldn't assist me....... but she went all out and transferred me to someone who could!!   5 minutes later I was all recharged and ready to roll!

Back to bed about 11pm and I watched a DVD. Nighty night day two!  Todays visitors were allowed to stay 15 minutes up close or 1 hour at a distance of 2 metres.  Thats a vast improvement on yesterday!

Day 3:-  3am  Side effect city!!!  Luckily these Doctors know exactly what to do and had already charted medicine to suit me.  I buzzed and nurses promptly assisted and I felt much better.  5am they woke me to give me meds not due till 8am!!!  But I drifted back to sleep.  The breakfast porter woke me at 8.30.  Today has been spent drifting in and out of sleep, in and out of bed, a bit of internet play and I watched most of a DVD, but kept falling asleep. I can't seem to stay awake, one side effect I struggled with.  Dinner delivered 5.30pm, supper delivered 6.30pm.  Mmmmmm  not too sure if they are aware the meals are so weirdly spaced.  Supper was raisin bread.... it was the 8th slice of bread delivered today!!!  I wouldnt normal eat 8 slices of bread a week!!!! Most made their way to the bin!  So I'm settling in for my last night here...finger crossed.  Full body scan in the morning but only if Nick with the geiger counter will let me out of the room.  Time to take my flowers and head on home.   Special thanks to Russ tonight for bin duty.  Todays visiting hours were 30 minutes up close and 4 hours at 2 metres.  Tomorrow I find out how long the residual will take.

Day 4:-  Another night with broken sleep and an early start only to find my 8.30 scan was now at 9.30 due to a unit meeting.  First was the Geiger counter, then 5, yes FIVE scans on two different machines and finally a discharge certificate and I was outta there.  There was some messing about with the scans and I had to return to isolation twice before all five were finished.  On the whole I had an excellent level of care and feel very lucky that Australia has Medicare to assist with the enormous cost of this kind of treatment.

Due to the time and day of my admission, it was not possible for me to make my own food choices until sunday.  Everything I was served was palatable and hot..... if not interesting.  And EVERYTHING was served with bread!!!  Strangely I was served soup, jelly and ice cream.....all without a spoon!

Oh and if you were wondering about the title   "Radioactive Iodine Ablation ..... just like a weekend camping" is because the bed is uncomfortable, the showers are nowhere near hot enough and you eat food you would normally avoid.  There is plenty of time to read, no TV!   It's just missing the sand and the fish and the mossies!

Let me just say that I am sure there are typos and verbosity in this post, but I am soooo tired and just cant proof read anymore.  I hope you enjoy it and if you are about to undergo Radioactive Iodine Ablation you have nothing to worry about.  Be prepared for sleepless nights and daytime lethargy. The ongoing lethargy apparently lasts weeks if not months. So take good care of yourself!


The weeks following the ablation were pretty damn HORRIBLE.  For the first 6 weeks I was lucky if I could scratch myself.  Well maybe not that bad but being newked sapped all my energy and whilst I tried to get a clearance to return to work, it was continually refused by my doctor.  I was a danger to pregnant women, small children, but strangely NOT to my cat or my mother (as they both have a fair bit of age about them).  The Nanna Nap ruled, I was asleep more than I was awake.  When I did finally return to work it was a struggle for the first 3 weeks or so, but I am now feeling better, but not yet back to my post op level of activity.

Radioactive Ablation is the prime example of what doesn't kill you makes you stronger!


  1. Replies
    1. It was certainly an interesting way to spend the weekend, but I wouldn't recommend it!

  2. "On the whole I had an excellent level of care and feel very lucky that Australia has Medicare to assist with the enormous cost of this kind of treatment". Yes, I am sure that even though it was uncomfortable I am postive you (and your friends)thank the diety of choice that it is available. I hope you are now an advocate of a domestic nuclear industry, and making sure the politicians spend more health dollars where it does some good. Hope all goes well.

    1. There have been hiccups along the way Mark. Being bumped out of the surgery list a number of time, waiting 3 months for the Ablation but really I have had nothing but excellent service from start to finish. If I was living in the USA then I doubt I could have ever afforded the wonderful care I have received. The lucky country... sure is!

  3. I absolutely loved reading this blog (as always). Mostly because it told it like it is. There seems to be a whole lot of mystery surrounding treatment for cancer, and I really enjoyed being able to walk with you for a little bit of your journey.

    Hope you are back to 100% pronto :)

    1. Hang on...didn't YOU find Mr Lumpy Bump??? It's this all your fault????? Joking Joking.... but what a wild ride we have had. Wonder what's next???

  4. I've been away from your blog for a long while and will have to catch up. Your witty and wise writing is a joy to read and I am in awe of your bravery and wonderful sense of humour in difficult circumstances. Good luck with the rest of your journey :)

    1. Thanks for the well wishes Jo. It's has been an exciting journey. Not one I would wish on anyone, but, except for one short week, I never thought there would be anything but a good outcome. Glad you enjoy the read.

  5. Thanks for your kind words peeps. I must say the whole blogging experience has made the journey easy and in the whirlwind of examination, consultation and treatment it has helped me to remember things with clarity and correctness. Hopefully it also helps someone going thru the same experience and provides them with direction and knowledge. My only regret is that I didn't begin recording the process from the moment of diagnosis. I did think it would be a great photo opportunity, but for some reason just a little part of me thought I had been misdiagnosed. How wrong was i!?!?!?!