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:-

   

When Violet went viral !!!

The internet is an amazing thing.  The popularity of this blog surprises me.  The amount to views is beyond belief for what is essentially a blog about my dance with cancer and my veggie patch.  Knowing this I thought a picture I put in a comment about the awesome Hunter Valley Santa Claus might garner about 50 views.  I was very very VERY wrong!  It went viral.  And the flow on effect was even more amazing.

As you may be aware my mum, Violet, has been diagnosed with Pancreatic Cancer.  The bevy of oncologists can't offer her any hope and she is deemed terminal.  The oncologists have offered themselves available for advice and information, but have passed mum's care over to the Westlakes Palliative Care team.  Knowing this mum is not happy with her lot and as a result is doing it tough.   

Unrelated my sister Nola sent me a link to a photo of a Santa with an amazing set up.  That got me thinking that it might jolly Violet up to have a photo with Santa.  She has always loved Christmas.  So I found The Hunter Valley Santa on Facebook and I made contact with them asking if they were able to accommodate an 86 year old in a wheelchair.  They replied to my enquiry saying they would love to.  A few days later I went to the venue, "Sinclairs" on Hillsborough Road, Warners Bay, here in Lake Macquarie.   I needed to check wheelchair access.  Mrs Claus was brilliant.  Santa was busy with kids, but Mrs Claus showed me side access easy for a wheelchair and we confirmed a time and date.    A few days later Violet frocked up and off we went to meet Santa.   

Santa and Mrs Claus asked the crowd in front of us if we could pop in straight away and from what I could see no-one there minded, even though they had already waited some time.  Santa is VERY popular out there!     So mum was wheeled in and Santa helped her out of her chair.  She sat on his knee, then on his throne and as he was about to help her back to her chair I asked if Santa could dance.  He could, so they danced just a few steps and we helped her back into her chair.    We weren't there long, but Violet was very very happy at what had just occurred.  We collected out images and USB and headed home.  She was very excited.    I used those images to create her Christmas Cards and had them printed by Redbubble.  One larger print was framed and took up residence on the china cabinet.  That's were I thought it would end.  

So a few weeks later a woman I do not know posted a pic of Santa and her son Levi, taken at "Sinclairs".   I commented on her photo that Santa and Mrs Claus bent over backwards to help Violet get her first ever photo with Santa.   I added a small copy of the image in my comment.   

Violet's photo and comment on this lovely photo of Santa and "Levi" was then picked up by the television show "Today" and they created a new thread or page or whatever you call it with Violet's photo and the story.   I didn't know anything about it until about 10 hours later when Josh rang me and  told me to go have a look and that 6000 people had "liked" it on Facebook.   While he was on the phone the "likes", "shares" and "comments" continued to grow.  He kept calling new figures thru the phone to me.  By morning about 12,000 people had "liked" her photo dancing with Santa.    

Now Violet doesn't really understand how the internet works and isn't on Facebook, but she understood what I said when I told her 12,000 people had clicked a button to say they liked the photo of her dancing with Santa.  By the following morning over 21,000 people had "liked" the photo, over 800 had "shared" it on their own page and over 400 people commented on the shot.    I showed her the Today story on the iPad and she sat and read every single comment.  She recognised just 3 names  and spent the remainder of the day smiling and joyous.  

The following day Santa contacted me on Facebook.  We had tried to organise a family photo with mum, myself, my sister and all three adult grandkids, but two of the kids were working and one was off in Sydney, so it couldn't happen.  It was a very kind offer though.   Just another indication of how awesome Santa and Mrs Claus were.   Sometime later Santa told me that the local television station, NBN, had contacted Mrs Claus hoping to interview Violet and do a story about her visit with Santa.   As Santa and Mrs Claus had been so wonderful to us I offered to get Violet back to "Sinclairs" so NBN could do their story.  And so it happened.   Violet was as excited as a kitten to be interviewed by the lovely Emma Murphy.  She was going to be on the news!!

NBN played to story on Christmas Eve and put it on their website too.  She tells everyone who comes to the house.  Shows them the clip on the computer and we watched it a couple of times on christmas day with all the grandkids here.

So one simple comment about how wonderful Santa and Mrs Claus are had made Violet go viral and she loves it!

Below is the link to the NBN news story.  I hope you enjoy when Violet went viral!

Click here to see Violets interview with Emma Murphy

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!

2015! Here we go!

Well 2014 was pretty good.  No new cancer, still having some side effects from treatment but realistically I'm very lucky and pretty good!     Working in the tin shed is going ok.  It's pretty squishy at times, but it won't be for much longer.  The new building is progressing as expected.  New car is going well too.  Needed some new tyres and yesterday, a new windscreen.   My first ever windscreen after the biggest stone chip I have ever seen!     Started taking a few more photos too.  Something that I have been missing out on in 2014.

Started a new collaborative photographic project with associated blog.  I've been wanted to do this for some time, but couldn't find a suitable collaborator.  But she was under my nose the whole time!  Lauren and I met about 7 years ago and started shooting together.  We are vastly different and 17 years apart in age.  The idea is to photograph the same subject each week and see how similar or how different our shots are.  It's called Westside girls and here is the link!  Westside Girls .

The veggie patches going ok too.   The crops are booming, yet I still haven't got my head around true crop rotation. The original single veggie bed has swelled to 12. For the first time I've grown rockmelons and for the first time I've lost some veggies to something other than insects.   The corn has been stripped and I can only assume that a very smart possum has worked out how to do this and a couple of the rockmelons appear  to have been attacked by lizards.  Still in the grand scheme of things it is ok to be feeding the native animals a share of the bounty!

As for the other Bounty that plays a part in my life,  William Blighs Bounty, I did not spent a lot of time reading about it in 2014.  Although some great new books have been written about the Bounty, and other fascinating maritime history,  I have not been doing much reading of late.  Seemingly a side effect of having some holes burnt into my brain as part of my treatment.   The desire to read is still there, but I find I can only read a few pages before sleep overtakes me and a big heavy book smashes me in the nose.   Hopefully I will get more reading under my belt in 2015.

So what else do I want for 2015???  Well not a whole lot more really.  I'm essentially very happy with my lot.  I am hoping for some relief from the annoying side effects of treatment.   I'd like to be sleeping consistently better than I am.  I'd love to spend a whole lot more time with camera in hand taking some quality snaps and sometime I'll be taking the camper for a spin.  Yep, this is the good life!

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!

What to pack? First Aid for campers.

Super excited about the new camping trailer, even though it won't arrive until August.  I've been listing and collecting things I think I need to pack for the first of many weekends away.  Crockery, cutlery, stemware, pots and pans, cooking utensils and bedding are all easily gathered together as I seem to have a multitude of EVERYTHING here.

Each car has a small emergency first aid kit, but I did want a dedicated one for the trailer.  I've looked at some commercial kits, but none seem to be suitable for my needs.  So I decided to assemble my own.   Once again the net supplies great information so I made a bit of a list and again found I already had the majority of the contents on hand.   So far my first aid kit is fairly extensive with creams for burns, antiseptics, itches, a tube of Paw Paw and a bottle of Aloe Vera which are both good for just about everything.  Plasters, non adhesive wound dressings and tape are for any broken skin with scissors, bandages and butterfly adhesives for more serious hurts.  Also packed are latex gloves, safety pins, antiseptic wipes and a digital thermometer.   Drugs included are antibiotics, antihistamines, rehydration tablets and the usual suspects... neurophen, aspirin and codeine.   The drugs I take to replace my mankey cancerous thyroid need to be refrigerated so they will be kept separate, but an esky will work just fine.  I have one esky, but might purchase a second smaller version for the drugs.

I'm not sure what else I might need, so the first few trips will be very close to home.   Facebook offers some good info and I joined a Caravanning and Camping Groups which seems very friendly and helpful.  

It will, no doubt,  take a few journeys before I get fully organised and know what I need and what is excessive, but surely that is part of the fun of it.   I like the idea of GLAMPING.  That little bit of luxury.  Perhaps a candleabra, recliner, maybe a spa?  Ok, maybe a bit excessive for a 6x4 camping trailer, but I will be pursing the more comfortable end of the camping spectrum.

So what am I missing here?  What else do I need to make my first aid kit complete?  Any ideas, tips or tricks  most welcome.

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!