6 months today

It's been 7 months since my last blog post and 6 months today since mum died.

I was sitting alone with her at the Mater Hospice, just holding her hand, when she faded away at 10.13am on 28th June, 2016.  She survived 313 days when her Oncologist said it would be  a whole lot less.  313 days, and each one was a battle.  She was scared of death and didn't want to be left alone. She didn't want to die.  She was scared of being buried alive and kept asking me to check and recheck that she was actually dead before they put her in her coffin.  She wanted to live to be 100.  She remained alert and aware until the very last day.  Her body, on the other hand, let her down badly.  Pancreatic Cancer has a very low survival rate, something like 7% last 5 years.  The national average is 180 days. Mum smashed that record!  Although she suffered a stroke and a heart attack, she remained strong.  She had little pain.... until 4 days before she died.  Even when on the drug pump she could still talk, but could no longer swallow.  She told me she wasn't hungry or thirsty.

I was extremely privileged to be able to care for mum.  She was an amazingly strong woman. She endured so much.  We talked about so much and laughed a lot. The daily photo for Instagram was a blast and is a daily record of her strength.... and her demise.  It also records the trips out, the ice creams and the many visitors she had during those last 313 days.

She might be gone, but she will never be forgotten.

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