It's now Wednesday the 8th March 2017 another relentlessly hot day in Melbourne. It's been almost a whole week without him in our lives , the loss is sorely felt but in amongst sadness we smile and we laugh, we share memories ...near and distant. His presence is still felt so greatly in all we do.
On the 20th January I asked our lovely, kind but honest oncologist how may Scott die. We knew at this time we didn't have very long left. His tumour continuing to grow with a rapidity that was frightening. We had three options. Death by sleeping peacefully . Death by haemorrhage from tumour . Death by pulmonary embolism, common in people with cancer. We absorbed this new knowledge, asked if we could fly to Tasmania and were told yes we could. We went to Tasmania with a purpose and enjoyed a few days in a stunning, beautiful and peaceful setting. Managing only a few hours out and about each day and the rest spent resting.
Returning to Melbourne we were aware that tumour had grown again and was now encroaching his line of vision and this was when it was thought time to try the radiotherapy. For some reason Scott took a reaction and this accelerated his decline in health and necessitated our stay in the palliative care ward, our home for the next 2 weeks. It only accelerated what would have happened anyway and we had to take the chance...it could quite easily have worked the other way. Scott also had a chronic,serious infection, a low immune system and a rapidly , growing tumour which was now reaching for his airway. So death by airway obstruction became our fourth option. We were told ( gently) he had days to live.
So live we did. I've already shared that we celebarated our anniversary, a birthday, made music, had dog cuddles , laughed, talked, sat quietly, cried together. He wrote a letter to us which will be read out at his funerals ( why have one when you can have two?) it is beautiful and he shares his love for all of us in his words.
On Thursday 23rd February, right after I'd pressed the send button, Scott had a massive haemorrhage from his tumour. It was the most horrific moment of my life. Not the blood but the thought that this was 'it' , this is how he would die. I caught sight of the horror in my own eyes in the mirror. However for some reason it wasn't his time yet, two hours later we were playing Trivial Pursuit in the lounge. ( I know. I won!) He said that night as we had our penultimate evening stroll around the ward "I stared death in the face today ...and I won" on the Friday he played guitar, he enjoyed his surprise visit from Haggis ( Haggis who refused to get on the train home ...and had to be picked up by our friend!) .
However, at 3am he started haemorrhaging again...not quite as horrifying this time with the experience of one already. Again, not quite his time to go but with yet another severe headache ( as a result of radiotherapy) he was made comfortable and allowed to sleep. A lesser man may have slipped away but not Scott. We had all said farewells, we thought this was almost time. On Sunday morning
at 10am, Scott sat bolt upright and said "hello" looking round at us all....with us staring at him in
amazement muttering "hi!". We had, what I can only describe as a blessed day, a bonus day with Scott up and showered and up to sit and chatting . As evening approached he started developing signs of Terminal Irritabity or Terminal Agitation. No one had told me about this, it gets a tiny mention in the ' preparing for death' pamphlets we are given. It was the most awful time for me and thankfully Scott would not have had much awareness of it. I won't go into details here but I was thankful when he was finally settled and comfortable. Up until a certain point he was still reacting to his beloved music, had an awareness that we were with him and was able to tell us he loved us.
Tuesday 28th February into 1st March we knew he didn't have long. Our beds had been pushed together since the Saturday night so we were all able to be close to him. He was not left alone. On Wednesday night he simply passed away, peacefully and quietly. Leaving us with the utmost sorrow but with the utmost joy that we had had him in our lives. Whilst we cry we also still laugh heartily as he would have expected us to do. Whilst we mourn him, we look forward to carrying him with us in our hearts for always. He lives on in our actions, in our children ...in their children in times ahead. He
has touched many peoples lives whether in friendship, in work, in a kind deed, through my writing this blog.
We as a family have been touched by kindnesses shown. We are single handedly keeping our local florist in business. Our friends have visited, called, sent messages and we are grateful to each one of them . Your kindness surrounds our family with love.
We will be starting a go fund me to raise money for both Peter Mac and ONJ. We want the money to be shared and used for research into Head and Neck Cancer at Peter Mac and to be
used to purchase games and toys for the Palliative Care Ward at ONJ . Being there allowed us such precious family time and we hope that by buying some new games ( it was Trivial Pursuit or nothing!) other families may know the special time we had. These will done in Scott's memory.
Please donate if you can but also please don't feel any pressure!
What I would ask is that you make the most of ever day and remember that life is for living and laughing and most certainly for loving.
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