257 days later.....

About 9 months ago mum was diagnosed with Pancreatic Cancer.  She had been poorly and had turned a nasty shade of orange.  Actually it was 257 days or just over 36 weeks ago now.   Her doctors gave her no hope.  Prognosis was vaired depending on which oncologist was offering numbers but the average was 26 weeks.  The doctor in Emergency that actually gave her her diagnosis said 12 months, so right then and there we decided to do a 365 photo project.  Decided to take one photo a day for 365 days.

So here we are 257 days later and  it has been something of a roller coaster ride.   Initially the plan was that I would stay at work until she was incapable of caring for herself on a daily basis and have care workers come in to clean.  Meal prep and shopping would be my domain and she would take care of her midday meal and personal care.

She went downhill very fast and in late october it was obvious I had to take leave from work.  I quickly ran out of Annual Leave and had little sick/family leave of my own after using 8 months of my banked leave with my own cancer treatment in 2012 and 2013.  Fortunately I had just over 12 months of long service leave I could call upon and so I have been in a nursing role since.

We did have some assistance in the home from an agency "assistant in nursing".... until I caught her stealing cash, but that is a whole other story.  We now have a woman come in for 90 minutes once a week.  She cleans the house, vacuums, steam cleans the floors, scrubs the bathroom, dusts, changes the sheets and puts the washing on.   Mum now has a hospital bed and soon a stand up recliner.  She can still walk short distances on a wheely walker but we rarely venture outside the house.  Palliative Care nurses and her GP visit once a week each, but both are only a phone call away if needs must. We've had the ambos come a couple of times too.

Mum recently spent a week at the Mater Hospice. They worked miracles getting her medication under control.  After a mini stroke and heart attack all her meds were fighting each other. So now she is home on reduced medication and we just take each day as it comes.

She enjoys the photo a day shenanigans.  If I forget, she always remembers.   Some days they are posed and themed, but most days they are just as she is.  She always worries about her hair!  The images can all be seen on Instagram here

But here are some of my faves:-

   

100 Strangers... a work in progress

Well it seems like a bazillion years ago, but it was only around July 2011 I first saw a book by Neil Winch about his 100 strangers project.  I don't know where he found out about it or what got him started, but I was fascinated.   The object was to photograph 100 strangers.   So that's introduce yourself, explain the project, find out a bit about them, get the shot and say goodbye within minutes.  The aim is to get a well lit expressive portrait.  I thought it was way too hard for me to attempt, but I was hooked.   Roll on August and I still hadn't taken a shot, but I found myself at the Cessnock Regional Art Gallery for an exhibition.  I had my camera and there were people everywhere.... I spied Stephen James, one of the exhibiting artists.   I had to act. It was now or never!   To my absolute surprise he agreed and the shot was taken.  By September I had 14 in the bag and I met up with the adorable, talented, witty, charming and delightful Chris Belyea for a walk around Sydney.  He challenged me to a "first to 5",  portraits for the day and he won... but ever the gentleman said I had won, which was very much not the case!

By February 2012 I was up to Stranger 38 when I again went to Sydney to meet Neil Winch, who had flown up from Melbourne.  He, Peter Grifoni, Evan Robinson and another guy met up for a stranger shoot in Newtown.  The boys were prolific shooters, Peter even dragging cafe staff out into the street for his shots.  They produced some amazing work that day.  I bagged just 3.  On the trip down by train I began to feel very unwell.  In fact I had to leave early and got back to Central to wait for a train north when I was overwhelmed with sickness.  Upset, ill, crying I rang Chris Belyea.  I knew he would be a the voice of reason.  He offered to drive into Central,  pick me up and drive me home to Lake Macquarie.  I didn't accept. That journey would have taken him more than 5 hours,  but we talked. He offered options.  Travel as far as I could north and when I could travel no more he would come and get me.  Knowing I had an alternative to passing out on the train gave me the courage to go on and I made it initially to Hornsby, then Wyong and finally Morisset.  Chris ringing and reassuring me all the way.

Towards the end of March 2012 Chris and his wonderful wife Sally came up to Kurri Kurri for the Nostalgia Festival where Sally enjoyed the music and the mayhem and Chris and I shot Strangers.  I was struggling with no energy and feeling ill, but I bagged 3 great shots that day.   Less than a month later I was diagnosed with cancer.  My last shot was on ANZAC Day 2012, no. 50.  I knew I would be out of action for a time.  I began shooting sporadically after that.  For a long time I couldn't even carry my camera.  Shots came in slowly.  ANZAC Day 2013 I shot Chris. Just 10 Strangers over 12 months.  I began to think I wouldn't ever finish the project.   Chris is a member of the Galston Uniting Church Men's Choir and they travel to Rathmines to sing at every ANZAC Day.   I shot him and his wife that day.  Chris too suffered from cancer.  I was too ill to attend the 2014 service.  Roll on ANZAC Day 2015 and we met again at the Rathmines Service.  Chris had spent most of the last 12 months in hospital and I had only managed 5 Strangers in 2 years.   He encouraged me to keep going.

So now it is May 2015 and I picked up the camera again.  I bagged Stranger 66 yesterday at Maitland.  She looked so interesting and her story reflected her look.  Just 34 to go.  At my current rate that would take well over 5 years, so I need to lift my game and get it done!

Here are some of the players.  You can see them all here :

#1 Stephen James. Cessnock Regional Art Gallery.

#17 Kristen.  Shot in Sydney with Chris Belyea.

#41 Lee.  Shot in Newtown with Neil, Peter and Evan.

#46 Tony the Quiffer.  Shot at the Kurri Kurri Nostalgia Festival again with Chris Belyea.

#60 Chris of the Glaston Uniting Church Mens Choir.

#66 Kate.  Shot at Maitland yesterday.

I'm really not cheating on you!

Dear Optical Delusion,  my beautiful blog.

I am really not cheating on you. You are still my number one.  My favourite, my first.  The thing I've got going over on Wordpress with Lauren is a side project.  Something I've hankered for for a long time.  Something you can't give me.

You see in Optical Delusion we are one, alone, but never lonely, we talk about our life and, for a long time, about the illness,  then the recovery and the veggies... there is always lots about the veggies.  We talk about the primary things.  The camper, the plans, what's really going on.   Over there on Wordpress it is a totally different world.  It's not just me, it's my favourite Ranga Lauren too.  We discuss ideas, themes, schemes but express it all in images not words.   We have guest bloggers too talking about their world and showing us their take on an idea floated.  Yes, true, we do post more regularly,  we try for ever monday night, but sometimes work gets in the way and it has to be later in the week.  Oh and we struggle with the formatting.  Damn thing is so hard.  It resizes our pics and changes our margins and generally drives us both to despair.  Monday nights can be quite maddening.  Where as you are simpler and easier and stick to the visual world, normal English language stuff.  I'm even having to rely upon 1st year uni HMTL to try and rectify Wordpress formatting errors.   You are the simpler solution Optical Delusion.

So don't feel neglected, I am not cheating on you.  Westsidegirls is just an aberration.  A image aberration.... oh and a whole load of fun too!

2014...Gone, but not forgotten!

2014 in pictures... my pictures.

Roll on 2015.  Lets have some fun!

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!!!

Happy Birthday you Silly Yak!

I got something totally amazing for my birthday.   You'll never guess what, so I'll just blurt it out and tell you.  I got coeliac disease!  Woot Woo!!!

Well it wasn't really for my birthday. Like as in it wasn't wrapped up or anything.   Maybe I should explain.... Since my return to work in mid April after Radioactive Ablation in February 2013 I have never felt well.  Never felt right. Never felt like I did before the whole cancer thing.  I was not just feeling physically unwell, but I had a poor work attitude and my moods were less than pleasant.   I had no energy and so in mid september I began seeing a psychologist and my GP on a very regular basis to try and work out what the heck was going on.  Well it has taken some months, untold blood tests, examinations and poking and prodding and chatting to finally get a preliminary finding that I am a coeliac.  Gluten intolerant. An auto immune disease where the villi in my intestine have decided they no longer wish to absorb any iron or vitamin B12 I ingest.  They have shut up shop and will not be nice to me until I cease consuming the bits they don't like.

Now this is a preliminary diagnosis only.  I have been referred to a gastroenterologist who will do a small intestine biopsy to confirm what the Doctor has surmised. Even though I am not fussed on yet another procedure, I do want confirmation one way or the other. So its back to hospital in February.

So what does being a coeliac mean.   Well it means that a toasted sourdough and a beer are out of the question if I want to feel good!!!   In more technical terms it means that gluten, the protein found in wheat, rye and barley is toxic to me.  At this stage I don't know a great deal more about it all, but I expect that to change soon enough! I did investigate the gluten free section of the supermarket this morning and was pretty impressed with the range of items available.  I was unimpressed that a small box of "corn flake" style breakfast cereal was nearly $7 a box!  It does explain why the British Government provide "prescriptions" for subsidised food for coeliacs.  I'm sure I'll figure out the food options though.  I can't see too many changes for my lunches and dinners, but I am a weetbix or oats girl at beakky and that will be an issue!   Oats themselves are fine, but they are usually processed in the same machinery as wheat and apparently that's a no no.

So there is a steep learning curve ahead of me, but I am hopeful that I will begin to feel back to normal soon.  It's been a long hard struggle. And at least it is not another cancer, which is what the Doc suspected from the start!

Next birthday I want something WRAPPED!!!  Thanks in advance!

UPDATE  19 February 2014 :-   The small intestine biopsy was done on 29 January and results were given today.  I am NOT a Coeliac. Nor is it another cancer, in fact they do not know what the problem is, but they are still working on it and I can't ask for more than that.   So I'm back on the sourdough and beer but along the way I learnt how hard it can be for a coeliac and how much wheat is in the everyday food we eat.  Ice cream as an example....  who would have thought ice cream and ice blocks would have wheat in it.  My hat goes off to every coeliac.  It's not an easy life.

Of holidays and hoarding!

The opportunity arose for me to use the absolute last of my annual leave to have a few days off.  When leave was combined with RDO's and weekends I managed to accumulate 17 consecutive days off.  BLISS!!  Since being sick in 2012 I have not been able to settle back into work very well.  So many things had changed.  While I was off work sick I watched my workmate Jenny die after an horrendous battle with cancer and I guess 7 admissions to hospital, 3 surgeries and being made radioactive caused a shift in my priorities.  The work place changed too. New broom sweeping clean, my office was moved and all my pictures came down.  I am no longer proud of the work I produce.  In the past, a name or a circumstance would have me recall a matter with ease, but this too has gone.  Whether it be as a result of the radioactive ablation burning holes in my brain or whether is it because of a shift in priorities I simply do not know.   The people are still the absolute best thing about that place, but they too seem different.  I guess it is most likely just that I am different now.

So with 17 days to fill I embarked on a task I had been attempting for some time, but constantly failing at.  That task is ridding myself of the hoarding gene I inherited from my mother and making my home "easy".  Easy to live in, easy to clean and all round better than it has been for years.  Late in 2012 I bought a new bed and my DIVINE 1880's porcelain and nickel plated number moved to the garage.  With it to the garage was sent two Edwardian pine chests and a matching duchess and all the "antiquey" pieces in my bedroom.    I kept the bronze statue and a couple of good pieces of art and the curtains, but the rest was banished to the shed!   Replacements were minimal, two bedsides and a single tall chest in painted timber and a brand spanking new ensemble that cost me an arm and a leg!!!  Choice!  6 months on, the bedroom is still pristine. A place for everything and everything in its place!  I have added only minimal stuff.  A brolly and hat stand and a canvas on the wall.

It seemed prudent to use these 17 days to work the same magic on the lounge and kitchen areas.  They have looked like a bomb hit for some time now.  I have taken to sorting stuff into boxes.  Garage Sale, Keep, Dump and "Things I want to photograph" are the working titles.   So far I have worked my way around about 2/3rd of the loungeroom with reasonable success.   The curtains went to the charity bin and were replaced by 10 new blockout drops in "Mocha". A standard lamp was added as was a footstool to match the  super comfy armchair I bought earlier this year and it all looks good thusfar.  I still need to address the dining table.  Depending on what day of the week it is the dining table is either a dining table that no-one ever eats at or a macro desktop studio surrounded by lighting gear and a portable backdrop stand!  This is the area I am up to now.  I could not have made it this far with the assistance of my sister Nola.  She drove me forward when I was stalled and did the jobs I couldn't do while injured.

It's getting easier.  The decision making.  What stays, what goes and which box they go in.   The garage sale boxes are filling and the rubbish bin goes out each sunday with the proceeds of the "Dump" box.  The local charity bin is copping a flogging too!  So a date has been set for the next garage sale and hopefully on October 26 the excesses of my life will be taken to new homes!  Until then I need to keep sorting "stuff".  It's not really that hard.  Will I use it?  Have I recently used it?  Have I EVER used it?!?!?!  I need to keep some things like the nun's habit (ideal for fancy dress parties) and the angels wings (ideal for photo opportunities), but so much other stuff can go.  I simply do not need it, will not use it and want it out of my world.

The kitchen is next to be stripped bare.  You know that second drawer down in the kitchen.  Come on....  we all have one.  The one with the olive stoner  and the parmesan grater in it.  Well that is my next big task.  Sadly I do use both my olive stoner and parmesan grater on a regular basis, but I bet there is stuff I can dispose of!!!

I didn't just spend my holidays in cleaning mode. I also took a couple of photos, did some bushwalking and spent a fair bit of time in the veggie patch.  I spent part time seeding dried chillies I grew last season and I am thankful I thought to wear latex gloves for the process.  I also had some work done on both cars and found a happy coincidence in both cars have the exact same 3 disc cd boxed set in them and both cars have disc 1 in the player! Yes, it is Faithless.  I managed to meet up with a few friends for coffee and cakie, but nowhere near enough of them. Did some family history research and debunked a few myths. Found that the marriage listed in the family bible from 1853 is a farce.   I also endured a heap of medical appointments (and they are wearing thin let me assure you).   In fact today at one appointment my phone rang, to confirm another tomorrow. I feel like I am on a treadmill and I can't work out how to get off!  Tonight I will cook up a storm and maybe even make some more choc mint fudge and chilli chocolate.  Going back to work tomorrow is going to be very hard.  Roll on retirement!

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.

If I had chickens I'd call one Aunty Linda!

Yep, If I had chickens in my backyard I'd call one Aunty Linda.  It's all Bronson's fault though!  In that great Australian kids TV series "Round the Twist" Bronson finds a baby in the cabbage patch and his sister becomes "Aunty Linda".  That's a great name for a chook I reckon!  But I don't have chooks.  I like the idea of chooks but I think the reality would be a vastly different. At night driving home I often see a fox scurrying across the road and I don't fancy encouraging them into the yard.  Also my big brave pussy catto "Pilchards"  is scared of his own shadow so I think he would be pretty put out with chickens roaming around in his domain!    A friend of mine in Victoria has just made the tree change and got four chookies today.  Her 5 acres is filling up fast with talk of sheep, beef cattle and alpacas!!!  My 1/4 acre might hold a couple of goats, but there isn't enough room for much more. Definitely not for a pack of alpacas anyway!

I have turned over part of the yard to production though.  My one 1200x900mm Hills Adda Garden raised veggie bed has now become SIX veggie beds.  I have read up a little on companion planting and crop rotation and even keep a veggie bed book, so I can easily look back on what worked and what didn't.  I'm planting veggies that are more resilient to bugs as I don't use any pesticides or herbicides.  Large African Marigolds are my only line of defence.  So I don't grow cabbage because you cant see the bugs inside until the crop is complete, picked and cut open.  Instead I grow broccoli because the bugs eat the leaves not the heads and they are really easy to pick off and throw to the local birds as a treat.

At the moment I am growing sugar snap peas, red emperor beans, dwarf french beans, brocolli, brussel  sprouts, 3 different kinds of cucumbers, 2 kinds of chillies, silverbeet, spring onions and herbs in pots.  Just the usual suspects thyme, mint, chives, parsley and rosemary.  I have a dwarf lemon tree too, which has good sized fruit, but it seems hesitant to ripen.  I don't use much by way of fertiliser, rather I treat the soil between crops with worm wee and my own compost.  That one compost bin just wasn't enough, I now have 5 on the burst!

At times there is an excess and I'm happy to be able to share it.  Couple a chicks at work do keep chookies, so from time to time I get eggs in return.  6 beds will not mean I can avoid trips to the fruito, but it does mean that I get super fresh veggies to supplement the bought stuff.  How many more beds would I need to be self sufficient?  Probably more than I have room for.  Another 3 or 4 would mean greater variety and, naturally, more produce,  but the backyard would begin to look a bit....... a bit less like a backyard I suppose.

I took some pics with my new toy camera today, so here they are.