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.

Two years later!

It was two years ago on 19 June that I had my first hemithyroidectomy.  It was, in fact, a right hemithyroidectomy and I had hoped it would be my ONLY hemithyroidectomy.   But this was not to be.  The frozen sections were found to be a malignant form of the cancer and 6 weeks later the very talented doctors opened up the original incision site and extended and straightened it for a total hemithyroidectomy.  So what's happened since then?  Well my treatment has continued and I now take 19 tablets a week to replace the now absent thyroid gland.   The levels of thyroid function are measured monthly and have been stable until this last round of tests.  So it is back to the specialist at the John Hunter Hospital to have that tweaked next month.  After both operations I felt well, although tired.  That hasn't changed.   I am happy and well, except for the constant tiredness.

Seems I have had an uncommon reaction to the Radioactive Ablation that occurred in February 2013 where by my blood count sunk.   This is being monitored a bit more closely and my blood count has risen in the last test, so I'm very happy with that.  The tiredness remains, but I have great faith that this will pass in time.

Apart from the two women I spent a few nights in hospital with, and have had no contact with since, and one guy from work who now works in Western Australia, I don't know anyone else who has been thru this process.  That may well explain why I have had so many people read this blog.  I'm guessing we are out there, but we have no way of connecting.    The United States has a Thyroid Cancer Survivers Group, but here ... nothing.   Even the Cancer Council of NSW has just a single page on Thyroid Cancer.  Yet when I was waiting for the Radioactive Ablation I waited nearly 8 months as they only do one person a week at the John Hunter.  So at least 52 people a year are treated this way in this region.

So what exactly does the thyroid gland do?  Well I had no idea, but apparently it makes makes two hormones called thyroxine and triiodothronine, but known simply as T4 and T3.  These hormones  are essential for every cell in the body to function normally and are delivered thru the blood stream.  Thus the drugs must be taken daily to do what the gland did before it ended up in a jar!

Lack of a thyroid gland has otherwise meant little change to me.  For the first 18 weeks or so I needed to keep the wound covered when outdoors to avoid dust and dirt and sunlight.  For that I used a variety of coloured silk scarves. Since then I have had to use sunblock daily to protect the scar and now two years on the scar is barely visible.   Also, I can no longer be either a blood or organ donor. Being a malignant cancer it has already escaped into my blood stream and will pop up somewhere else in my body.  That might happen tomorrow or it might not happen for a few years, but the Doctors have assured me it will happen.  So no sharing my blood products with anyone!!

If Medicare didn't exist in Australia the nuclear scans, biopsies, operations, radioactive ablation,  follow up tests and ongoing drugs would have made treatment for me highly unlikely.  Two injections I had in early 2013 cost over $1000 each!!  Luckily Medicare picked up that tab!!

Should you find yourself on the cusp of this diagnosis fear not.  There are great doctors out there, I know because I met a LOT of them.  Success rates are high as are treatment standards here.  Don't self diagnose, or google diagnose.  I tried it and I thought I had tonsillitis!   I did ask my doctor to take some photos of my specific cancer, but he declined.  He did say if I wanted to see the surgery there were examples on You Tube.  I watched them, but I did want to see my own lump!

If you are squeamish look no further.  Selfies follow, one for each op!

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!!!

Goodbye 2013, Hello 2014!

2013 is just about to click over into 2014 and just like that moment when your cars odometer clicks over a special number, it will seem all vital that you experience it and all important and yet strangely totally unimportant in mere moments after the event.

2014 will be an improvement on 2013, as 2013 was on 2012.

As for 2013 I had hoped to leave the whole cancer thing in 2012, but come February I was back in hospital for the Radioactive Iodine Ablation and lost another 8 weeks off work while I was radioactive.  Thinking the worst of it was all behind me I tried to get back into the swing of work and life... but it was not to be. I struggled and struggled until September when Dr Jeff decided it was time to test for all manner of cancers and oddities.  The first tests came back showing there was definitely something a rye (pun intended).  Ultimately I got a clearance on all the "regular" cancers, but Coeliac was preliminarily diagnosed.  So where I had hoped 2014 would be free of hospitals I am, apparently,  incorrect on that.  I go back in in mid February!  But that's the end of it. I am totally over the whole feeling crook senario. AND NO MORE HOSPITAL!  They are full of sick people you know!!!

2013 was filled with wonderful people.  If I began the list this post would go forever.  Let me just say I hope THEY know they are special and made 2013 great for me.  There are some I will never see again. Death and distance keep me apart from some special friends but that doesn't mean they are not thought of.  Distance seems much smaller with the internet being so accessible, but it's not the same as being there.  It IS a whole lot less final than death though.

2014 will see me finish my 100 Strangers photographic project and then work out what to do with it.   I'm stuck on number 64 because I never seem to be well enough to travel far from home.  That will change after February. I also want to spend more time on portraits in general and know a few likely suspects that will get the whole four light set up foisted upon them!  If you are one of those people, fear not... it is mostly painless!  Mostly!!!  I'd shoot more bands at the 16's if some goodies comes up.  It's a great venue for me to practice those skills.  A bit more macro is needed too.  I have a new series in mind too, but I will need the indulgence of a few friends to pull that one off!

2014 will also see me back in the veggie patch.  I'm still planting somewhat randomly. Not really following  a good crop rotation program or even good companion planting.  My record keeping sucks and I need to stagger my planting fortnightly.  So at the moment I get a glut of one veggie and the others are as rare as hens teeth.  I tried growing pumpkins for the first time this year and harvested my first on December 27.  They are messy and run all over the yard, but that just means less mowing! I think I need more flowering plants to encourage more bees, so rejuvenation of one of the beds that runs along the dividing fence is a must.  I have the plants.  It's the energy I am lacking.  Chickens are still a no go zone for me.  I do need to construct some frames for climbers in the yard.  That will have to wait to 2014 now!

So it's back to work on the 3rd for me and the daily grind is drawing closer to an end with retirement in the not too distant future.  But until that day comes I'll still be using photography as my primary escape method.

In celebration of 2013 here are a selection of my fave pics for the year.
Hope you enjoy them too!

Oh what a night in old Sydney town!

What a week it has been.  First I was going, then I wasn't going and at the last minute I was going again.  Going where?     Going to Sydney to meet a totally awesome man whose musical and film making career I have been following since 1995.

I wanted to go, but after last weekend and the garage sale sapping my limited energy reserves  I doubted I could follow it up with a long drive to Sydney and back on a school night!  I told him I'd be there, then I told him I wouldn't, but I knew this would probably be my one and only opportunity to meet him face to face.  Sure we are "facebook friends" and we have been using the chat function on there since about mid 2010, but face to face!!  How could I miss this rare opportunity?   The simple truth is he lives about 17,000kms away in cold old England and was out here on a tour promoting one of his movies and running a series of empowering workshops designed to help creatives get their ideas out of their heads and into the real world.  Hence, a trip to Sydney... for both of us!

What should have been a 1 hour 40 drive took substantially longer in the most hectic traffic I have ever seen, breakdowns on the toll roads and the eastern distributor compounded the usual end of the day rush of people just wanting to get home.   There might well be some tickets heading my way as a result.  Travelling in a Transit Lane for one, although I wasn't in there for more than about 500m.  There might be some speeding tickets too.  And although the car is registered on my etag, it wasn't in the windscreen.  Yes, I heard your giggle when I mentioned me getting a speeding ticket, but you see I wasn't in Larry Laser.  I was driving my sisters car and it is quite the mover!!!   I won't  even go into the debacle of trying to find my car in the Star City Casino carpark afterwards.  Pink C6 I remembered....  but what floor would you expect that to be on?  Well I can tell you it is parking level 3.  But it did take me some time to work that out!

It seemed Jamie was as pleased to see me as I him!  There were people everywhere, but when he approached me he was very excited that I had made it down.  There were hugs and kisses.   I had taken him a bag of jelly snakes as he likes treats!  He said they were his fave!  He had a good look at how my  my neck scar  had healed, he had seen photos of the gore after surgery.  I introduced him to my nephew Nic and they had a good old chinwag too.   Conversation flowed easily and time passed very quickly.  So with one thing left to do I got my gear ready for the Strange, NOT Stranger project photo.   Jamie had agreed to be photographed and I had the gear , albeit NOT may favourite 135 f2 lens.  I packed the 85 f1.8 cos I suspected we would be short on length.  The 85 is not my fave, but it is a good lens all the same.  So in one shot I captured him. More hugs and kisses followed and we disappearred in different directions out of the Maritime Museum where we had met.  The internet has made this world a very tiny place...and I am glad.

It is said that picture is worth a thousand words... so here is 1k of wordiness!

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.