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!

Wednesday, February 6, 2013

My 40th!!!

Yep, My 40th blog post.  If you thought it was my 40th birthday you are in the wrong millennium and probably need to seek out a trustworthy optometrist !!!  I don't even remember my 40th to be honest.  Never paid much attention to the whole counting off the years thing.  Sure, I love the cake, but living in the land of plenty we can have cake whenever we want!  So nope, not 40th birthday .... 40th blog post.

3000 views too, well actually a chunk over 3000, whoodathunkit!!!

So what do I use my blog for?   That's an interesting question that I'm not sure I have an answer to.  Most of the posts for 2012 were about me.   Me me me!! It's all about me,  Me being sick and me feeling better and I hope that someone who is diagnosed with Papillary Carcinoma (Hurthle Cell variant) can read up and see that the treatment on the whole is pretty good.  One post that received a heap of viewers was the one about no longer being able to be an organ donor, but Sharm came forward and took my place in that line!  I thank her for that!!  Organ and blood donation are poorly patronised in Oz and many many people die waiting for a donation that never comes.  If you aren't registered..... give it some thought.  It really is the last thing you will ever do.

Prior to getting cancer I think my blog was mostly about my photos.  A place to share the ones I liked and to be able to view them on a black background instead of the usual flickr white.

I'm not sure who in Trinidad is reading this, but they are an avid regular reader! Hello from me!
The stats functions with Blogger is interesting.  It can tell me whether the viewer is a Mac or PC user, what browser they use, what page they look at first and if they then move to another.  I have no idea why i need to know that stuff, but it is interesting.  I guess if the blog was a commercial venture then that kind of info would be important. But it isn't, so it's not!

I do read a few blogs too.  Ms Moo has a couple of interesting ones happening.  Now you know I am crap with links, but I shall try. Homespun Field is a goodie too. and my mate Rebecca has a newie happening too at .  There is a top blogging magazine called "Artful Blogging". It is from the USA and is often hard to acquire, but there are heaps of great blogging links in it.  I'm trying to get my sister to blog. She has an obsession with quilts and quilting, dolls and dolls houses and I'm pretty sure there a a number of other freaky people worldwide into that kinda stuff.

No point blogging without a photo or two to make the reading worthwhile, so here's a couple I was messing about with earlier.  I do like a car, but real ones are better!