I'm pumping iron!

Yeah ok, get off the floor and stop the laughing.  As if I am ever likely to turn into a gym junkie!

As part of my seemingly never ending cancer treatment I am now pumping iron... directly into a vein! So the story goes after the Radioactive Ablation in February 2013 my iron levels have continued to sink.  I've had every test known to man to work out whats gone wrong, all with no definitive result.

Initially the GP thought it was a consumption issue. I simply wasn't eating enough green leafy veg and steak.  But I thought I was.  I increased consumption and the only thing to rise was my bad cholesterol!!!    So after about 10 months he added oral iron tablets into the mix  (just what I needed, yet another tablet!!!)    6 months later... the iron was still dropping so I was referred to a gastroenterologist.

I saw him and he decided I needed a endoscopy, colonoscopy and a natty little camera inserted into my belly to plot the course of my gut to find out what was wrong in there that iron just didn't like being around.  Of course He also extracted a HUGE amount of cash from my wallet which, once again, my private health insurance failed to cover.   The camera came back with some magnificent pics of my intestine. Pristine!   Absolutely smick!   I saw them, my guts look great!!!  So this ruined his belief in that I had Coeliac disease, a new cancer, ulcers or intestinal bleeding.   His final report read something along the lines of  "it's obviously a consumption issue".   So that was a total waste of time and money and back to the GP I go.

All the time my iron levels are falling even lower and as a result my energy levels are heading southward at an equally alarming rate.   The "normal" range for which I was aiming is between 15-45.  Prior to meeting up with the Gastroman I was running at between 6 and 8.  So back on the steak I went. This time with daily double doses of iron in tablet form.  Naturally you would expect a rise, however slight.... but no.  I dropped for 6 to 4 and finally to 2.   Getting out of bed, walking to the car, preparing a meal, working all became such a burden that I was perpetually exhausted (and grumpy).

Neither I, nor the GP could work it out.  I found a line on an American website that said Radioactive Ablation messes with SOME peoples blood, but nothing more than that.  The post said it was an "uncommon side effect"  but neither the GP or the Gastro believed it.

So I spoke to my friendly pharmacist about it.  He suggested I speak to the GP about inter muscular iron injections.   I did, but the GP gave me three reason NOT to do it.  1.  It can cause immediate heart problems and his surgery does not have a resus room and   2. It can cause horrible skin staining 3.  inter muscular is not a good way of absorbing iron.  It has limited efficacy.  So in desperation he wrote to the Mater Hospital asking them to triage me for an urgent iron transfusion/infusion.   But they refused.  As I was not in active cancer treatment I did not fit their criteria.

My GP is a real  trooper.  He found a private haematologist here in the Hunter who would see me.  I just had to wait 3 months for an appointment!!!   I saw him and he, unlike Gastroman charged me a reasonable amount and 7 days later I was sitting in the Mater getting hooked up to a bag of fluids.  Yes, the Hospital that wouldn't do me 3 months earlier, were now happy to have in in their facility.

I was hooked up at 8.30 am and unhooked a bit after 2pm I think.  There were 8 chairs and 2 beds in the room and they were on high rotation all day.   I was there the longest and chairs either side of me had 3 and 4 people thru them while I just sat and sucked up the goodness.  On the central storage rack I counted over 40 IV set ups in the morning.  When I left there were probably 4 or 5 still hanging there, yet there were still about 12 people in the waiting room!  The staff were on the go all day.

Some weeks on now and the results has been....less than staggering.  In fact I have not felt any relief at all BUT it will take more than one transfusion get me back to "normal".   The Haemo man has decided that "occult gastrointestinal bleeding" is the cause.  What that means is the Haemo man disagrees with Gastroman.  Thing is I really don't care WHAT is causing it, I just want to feel normal again!!!    The doctors are expecting great numbers, as am I.... but only time will tell.

As per usual a few images but be aware some might find them confronting.

Iron , not ironing!

Back to see the Doc again today. Still have a problem with iron, or rather the lack of it. I had the usual test last thursday and got the call to come on it. Everything we good, or explainable, except the iron. There is some issue with my blood glucose levels, but the blame there can rest squarely on the shoulders of the Easter Bunny! Everything else is good ... except iron.

Whilst not being a rabid carnivore I always thought I ate enough red meat as I haven't really had an issue with low iron before the Thyroid Cancer.  Even after the partial and total thyroidectomy there was no hint that I was anaemic. In fact I was amazed at how well I felt after all three operations. None of the dozens of blood tests I had back then showed any issue.  That was back in August 2012.    Since the Radioactive Ablation in February 2013 there has been a consistent problem with energy, or rather the lack of it, depleted iron levels and a low blood count. Beginning September 2013 the Doc started to hunt for the answer and since then I have had every test known to man to isolate the issue. I have been tested for pretty much every kind of cancer and they have all come back with reasonable results, but with nothing to flag an iron issue. 

As part of that ongoing investigation I was referred to a gastric specialist in January.  In February he, amongst other things, implanted a camera in my stomach while I was under general anaesthetic to rule out bleeding ulcers or coeliac disease as a reason the the iron problems. Again everything came back normal and whilst normal is a good thing it doesn't help when I can't lift my head off the pillow or walk any distance without having to rest and recover.  The gastro bloke reckoned I wasn't consuming enough red meat and so he gave instructions as to how much red meat I needed to consume before the next round of tests.   I have now undertaken a "meat feast" where I have had red meat at least once a day, every day and am also taking iron supplements.   Those results caused the call in from the Doc today. Yes, the numbers have improved a little, but I am still way off "normal". 

The effects of the iron deficiency are becoming a real issue. Gone are the days of an afternoon spent mowing. I can now do about 10 minutes without having to stop and rest.   So if the iron issue isn't a new cancer, coeliac disease, bleeding ulcers, or lack of consumption what is causing the problem??? I asked if it was from being made Radioactive and so Doc is now turning his mind to that as a cause. 

 
Thyroid cancer does affect a lot of people, but it is not high profile and as such there is little information available on the net in Australia about it. If you were to search the Australian Cancer Council website you would struggle to find anything more than a passing reference to Thyroid Cancer. Searching worldwide does glean a little more information and today I think I hit pay dirt with a couple of lines on an America Thyroid Cancer Survivors website. The following words were buried in a link about Radioactive Ablation under the title "Other potential side effects of RAI" (RAI being the acronym the americans use for Radioactive Ablation). Anyway it said... "Temporary or permanent decreases in blood cell counts can also occur. " YIPEE!!!! Finally a possible reason the lack of iron. Today one of the things Doc said was that my blood count was finally on the rise. So hopefully with some further research by the qualified one ( I rate my Doc, he rocks)  there might be an answer coming.   He is also trying to organise a transfusion for me of chemically manufactured iron (as opposed to a blood product).  This might take some weeks or even months to arrange, but the process has begun.  

Hoping to feel quite normal again sometime soon.  

This may well have been the cause of the iron issues.  Not really the case of what doesn't kill us makes us stronger!!!

The 'C' word....... Cured?

Massive week in my world.  Last thursday was the one year anniversary of finding Mr Lumpy Bump.  Wednesday this week is the one year anniversary of being diagnosed with cancer, later known to be a Papillary Carcinoma, although Mr Lumpy Bump is a nicer name!!! 3 operations, 6 admissions to hospital and 4 days in isolation glowing in the dark after Radioactive Ablation has lead me to today.  And today entailed heading off to the John Hunter Hospital again today to see the man of small stature with the enormous brain, my Endocrinologist.  He has a non descript ascent and hand made suits and all the answers I needed. Unusually he was LATE today. He is normally right on time if not early, a real rarity in the public health system.

He had all the answers today. The last 5 sets of blood tests, the 3 CT scans,  the 2 Gamma Camera scans and the geiger counter results held the answer. But the answers fell short of the "C" word.  Cured. What he did say was I had "no distant metastasis" which means the radioactive ablation worked  where it was meant to and from that he knows that at this stage there is no spread of cancer.  The Radioactive Iodine did burn thru three places in my brain and it was only supposed to be one, but Doc thinks it is all still ok up there!  He still says cancer will return, but it could be YEARS not months away.

So now I have ongoing testing (blood tests and ultrasounds and scans) on a quarterly basis for the next 3 decades or longer, depending on MY useby date!

My plans to resign and get my hands on my superannuation are out the window.  No buying an Avan and racing off around Australia for me!   Plan B is work on for another few years and retire happy and healthy.  So that's where I am at.  Blood and organ donation are still a big fat no, so if you are fit and healthy and aren't registered then give it some thought and consider signing up.  Organ donation really is the last thing you will ever do and it is a good thing ........  give it some thought!

So now it is time to celebrate.  I think a shandy is called for ...... oh yeah I really live it up!

Just a simple pic as a thank you for reading this far.

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!

UPDATE:

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!