One photo taken every 4 minutes over a 24 hour period at whatever I was looking at in that precise moment. I begun midnight on Friday (one day in March 2012), and finished on Saturday evening at midnight. As a terminal illness patient I was frickin' tired by the end of it.
Saturday, 21 April 2012
Sunday, 8 April 2012
Pancake Sunday
(Please note: if you are reading this blog for the first time, you need to start with the post entitled " The reason" which can be found in the 2011 Archive)
Pancake Sunday came about for a few reasons. Lily (in theory), would get one sleep-in of the week, Sunday. Sunday was the day in which there was no work, there were no doctor's appointments and Arwyn did not have any activities that had to be performed in the wee hours of the morn. It took many months of conditioning for Arwyn to realise that Daddy could master simple tasks of turning the TV on and getting breakfast for her allowing Lily that extra half hour of sleep from a 6:30am wake up call to 7am. J.J as master-chef extraordinaire also saw it as opportunity for "Daddy/Daughter" time, where they could bond, play and laugh together over Simpson's episodes. It has become a tradition - Sunday's around the house are now known as "Pancake Sunday". It is a beautiful tradition, one that Lily feels the need to keep - yet Lily's inability to cook pancakes correctly from the "shake n bake" range of products is hindering the process.
The pan is either too hot or not hot enough. Lily has buttered the hot plate, sprayed the hot plate with cooking oil and still the pancakes will not pan-cake up. The simple solution, as they discovered this morning was that McDonald's hotcakes are just as good as pancakes made on the hot stove, with the added bonus of less dishes to wash. Smiles all around, breakfast together as a family on a Sunday.... it's the simple things we cherish.
J.J - Arwyn is my little apprentice, we get up, I start getting the pan and burner ready. Arwyn goes to her toy kitchen and comes back with her apron and floppy chefs hat, she grabs her step stool and waits patiently for her turn to help.Which consists of pouring the mix into the pan. But she is ecstatic at that. She'll go and setup her table and chair, takes her juice and then sits down and watches Scooby-doo. All this time she is full of questions - it's too early for this many questions, but she's too precious.
And of course the maple syrup.
Again and again "is there syrup?"
I'm beginning to think the pancakes are just a delivery system for the maple syrup.
I'm hoping that this tradition carries on, maybe with Arwyn giving Lily a sleep in and making pancakes for both of them.
I wanted at one point to do a Sunday roast night as well, Lily does great roast potatoes and veggies, my roasts are frickin' awesome and when we did do it, the three of us talked and laughed about the day and week. Sadly, this one has fallen by the wayside - my energy and appetite just aren't there at the moment. But I am making a concerted effort to teach Lily how to cook and prepare all of my dishes, so no matter what the family food traditions are going to continue along.
Pancake Sunday came about for a few reasons. Lily (in theory), would get one sleep-in of the week, Sunday. Sunday was the day in which there was no work, there were no doctor's appointments and Arwyn did not have any activities that had to be performed in the wee hours of the morn. It took many months of conditioning for Arwyn to realise that Daddy could master simple tasks of turning the TV on and getting breakfast for her allowing Lily that extra half hour of sleep from a 6:30am wake up call to 7am. J.J as master-chef extraordinaire also saw it as opportunity for "Daddy/Daughter" time, where they could bond, play and laugh together over Simpson's episodes. It has become a tradition - Sunday's around the house are now known as "Pancake Sunday". It is a beautiful tradition, one that Lily feels the need to keep - yet Lily's inability to cook pancakes correctly from the "shake n bake" range of products is hindering the process.
The pan is either too hot or not hot enough. Lily has buttered the hot plate, sprayed the hot plate with cooking oil and still the pancakes will not pan-cake up. The simple solution, as they discovered this morning was that McDonald's hotcakes are just as good as pancakes made on the hot stove, with the added bonus of less dishes to wash. Smiles all around, breakfast together as a family on a Sunday.... it's the simple things we cherish.
J.J - Arwyn is my little apprentice, we get up, I start getting the pan and burner ready. Arwyn goes to her toy kitchen and comes back with her apron and floppy chefs hat, she grabs her step stool and waits patiently for her turn to help.Which consists of pouring the mix into the pan. But she is ecstatic at that. She'll go and setup her table and chair, takes her juice and then sits down and watches Scooby-doo. All this time she is full of questions - it's too early for this many questions, but she's too precious.
And of course the maple syrup.
Again and again "is there syrup?"
I'm beginning to think the pancakes are just a delivery system for the maple syrup.
I'm hoping that this tradition carries on, maybe with Arwyn giving Lily a sleep in and making pancakes for both of them.
I wanted at one point to do a Sunday roast night as well, Lily does great roast potatoes and veggies, my roasts are frickin' awesome and when we did do it, the three of us talked and laughed about the day and week. Sadly, this one has fallen by the wayside - my energy and appetite just aren't there at the moment. But I am making a concerted effort to teach Lily how to cook and prepare all of my dishes, so no matter what the family food traditions are going to continue along.
Saturday, 7 April 2012
Adjustment
Initiate panic mode.
This isn't the Hollywood movie where the hero gets sick and dies why the heroine looks mournfully out to sea from a cliff-top bathed in white, wind whipping her hair with the solitary tear rolling down her cheek (Gag, choke, splutter - spare us please).
Reality check = 3 weeks to 3 months to live, possibly beyond that if we are lucky however "unlikely".
Trying to get your head around that is near impossible. I mean we knew he was considered "terminal", but everything had been going "okay" that was until an infection and blood clot changed everything and within the time frame of twelve days, J.J's physical age is probably that of an unfit 80 year old. He shuffles, he's out of breathe.
One of J.J's friends made a comment at the beginning of this blog that he/she didn't want this blog to be a blow by blow of his deterioration - and to tell you the truth, I didn't want that either. You wanted to see entries about amazing acts of life that we somehow managed to accomplish but reality check - despite desperately wanting to fulfil that goal, he was never able to. He was either feeling too ill from the treatments or they were lining up dates for the treatment. Radiation alone ate up roughly ten weeks altogether; hospitalisations occurred, as did surgery. And now it feels too late.
J.J had wanted to do Broken Hill and Tasmania. Yet his health prevents this. And he doesn't want to be too far from home now. I'm just glad that prior to J.J getting cancer he has lived. He has travelled, experienced life, had a family, found a career that satisfied him. He's seen so many things that some of us will never get to see and I hope our daughter inherits that gypsy persona so that she too will experience life at warp speed just in case...
Being referred to the Palliative care unit = change, adjustment, readjustment and feeling like your drowning. We had equipment delivered to the house, a hospital bed for when we need it, a Rollie walker, hospital table and shower chair.
On Good Friday, the day begun with relatively normal type behaviour from all involved. We were due our first visit from our local Pal care unit team. J.J noticed that there was no flow from his catheter and it was being uncomfortable. He decided to wait for the Pal visit yet it got so unbearable for him that we opted for the E.R. On a public holiday we had a bit of a wait. It's funny how you think someone who has terminal cancer, now apart of the pal care unit and you have to wait. You're already waiting to die and you would think that they would get you in, get you out so you can live as much life as possible before the final curtain....but J.J was made to wait as the E.R staff had "handover" to go through first. The man is sweaty, he is cold and clammy, can barely stand and now you are asking him to stand while you have a shit and a giggle with your co-workers. Somehow, I expected him to get seen relatively quickly, I guess even being terminal you get no special treatment when it comes to our local hospital's E.R department.
We are in adjustment mode. Learning how to cope, how to live, how to be. J.J's inclination to the Internet has waned somewhat, so I do not know how much input he will have here, I'll try to keep you all updated if you wish without dominating this blog with my own feelings yet I can't promise they wont come creeping through as I do not wish to be negative around him so it is best that it comes out here.
Short one tonight....more when I get the chance later on.
This isn't the Hollywood movie where the hero gets sick and dies why the heroine looks mournfully out to sea from a cliff-top bathed in white, wind whipping her hair with the solitary tear rolling down her cheek (Gag, choke, splutter - spare us please).
Reality check = 3 weeks to 3 months to live, possibly beyond that if we are lucky however "unlikely".
Trying to get your head around that is near impossible. I mean we knew he was considered "terminal", but everything had been going "okay" that was until an infection and blood clot changed everything and within the time frame of twelve days, J.J's physical age is probably that of an unfit 80 year old. He shuffles, he's out of breathe.
One of J.J's friends made a comment at the beginning of this blog that he/she didn't want this blog to be a blow by blow of his deterioration - and to tell you the truth, I didn't want that either. You wanted to see entries about amazing acts of life that we somehow managed to accomplish but reality check - despite desperately wanting to fulfil that goal, he was never able to. He was either feeling too ill from the treatments or they were lining up dates for the treatment. Radiation alone ate up roughly ten weeks altogether; hospitalisations occurred, as did surgery. And now it feels too late.
J.J had wanted to do Broken Hill and Tasmania. Yet his health prevents this. And he doesn't want to be too far from home now. I'm just glad that prior to J.J getting cancer he has lived. He has travelled, experienced life, had a family, found a career that satisfied him. He's seen so many things that some of us will never get to see and I hope our daughter inherits that gypsy persona so that she too will experience life at warp speed just in case...
Being referred to the Palliative care unit = change, adjustment, readjustment and feeling like your drowning. We had equipment delivered to the house, a hospital bed for when we need it, a Rollie walker, hospital table and shower chair.
On Good Friday, the day begun with relatively normal type behaviour from all involved. We were due our first visit from our local Pal care unit team. J.J noticed that there was no flow from his catheter and it was being uncomfortable. He decided to wait for the Pal visit yet it got so unbearable for him that we opted for the E.R. On a public holiday we had a bit of a wait. It's funny how you think someone who has terminal cancer, now apart of the pal care unit and you have to wait. You're already waiting to die and you would think that they would get you in, get you out so you can live as much life as possible before the final curtain....but J.J was made to wait as the E.R staff had "handover" to go through first. The man is sweaty, he is cold and clammy, can barely stand and now you are asking him to stand while you have a shit and a giggle with your co-workers. Somehow, I expected him to get seen relatively quickly, I guess even being terminal you get no special treatment when it comes to our local hospital's E.R department.
We are in adjustment mode. Learning how to cope, how to live, how to be. J.J's inclination to the Internet has waned somewhat, so I do not know how much input he will have here, I'll try to keep you all updated if you wish without dominating this blog with my own feelings yet I can't promise they wont come creeping through as I do not wish to be negative around him so it is best that it comes out here.
Short one tonight....more when I get the chance later on.
Monday, 2 April 2012
Love you till the end.
If you haven't heard it, this link will take you to The Pogues - Love you till the end
I feel like we are coming to a fixed point in time.
I feel like we are coming to a fixed point in time which cannot be changed.
I feel like we are coming to a fixed point in time which cannot be changed once it is played; the thoughts are circular in motion and the only way I am going to get them out is to write them down. And I lament that it isn't going to be written on parchment in black ink that stains my flesh. I lament that it isn't written by candle light in which my eyes strain to see my own words against the backdrop of an old world etched upon the Earth. For our lives seem like the back story to a tale that only Austen or Bronte could have written. It's painful and you only get to skim the details yet there is so much more to be said, but then the reader moves on with the main story and those back story characters are merely a memory slowly fading into haze.
But I'll remember.
"I just want to see you
When you're all alone
I just want to catch you if I can
I just want to be there
When the morning light explodes
On your face it radiates
I can't escape
I love you 'till the end"
I love you. We've said it to each other a great deal over the last two years since this chapter of our lives has begun, so I hope that its meaning has not been lost. I love you J.J. I love your smile, your blue eyes - I love your mind.
I want more though. I want more time to talk with you. To sit across from one and other and stare into each others eyes. Warranted when we did that it was a competition to see who would look away first in order to establish the Alpha dog of the relationship - yet it always made us laugh, even now when we do it when you're lying down in a hospital bed or on the lounge back at home it still sends us laughing.
I have loved laughing with you and at you - the way your eyes crinkle and you snicker at whatever it is that is making you laugh.
My heart is breaking.
My heart is breaking into tiny fragments, exploding outward in slow motion from my chest. It's in trouble and it's because my heart knows it is loosing you. Oh God....it hurts so much and your not even gone yet. Some nights when your not with me, be it from being in hospital or you are just up coping with your illness when you are home, I feel your hand touch mine, your fingers interlace with my own and I'll wake from the dream to realise that you weren't even there. My lips will feel like they have been lightly yet tenderly kissed by you, yet you weren't there - I wondered if that is what is going to happen when you are gone.
Everyday my soul is a little less brighter than it should be - I can't say that it is dying for our daughter is holding it firmly in her grasp - but know that's it's pallor is less brighter every day closer to the final day.
It's so ridiculously stupid when I say that I didn't expect this so soon. I mean we have been going along, doing treatments, always promising to go on that holiday when you were feeling up to it - but you never felt up to it - and now I'm surprised that in a few months you could be gone from my grasp. Now we are talking about ringing the funeral homes, buying the final resting place for your ashes, working out the details that only death can bring...and I'm stupidly surprised by it all.
"I just want to tell you nothing
You don't want to hear
All I want is for you to say
Why don't you just take me
Where I've never been before
I know you want to hear me
Catch my breath
I love you till the end"
I sit here crying, the tears rolling off my cheeks onto my chest and I know it is not doing anything. It doesn't help you and it doesn't help me and I want to be cold, and unfeeling yet every time I try the warmth of your love reminds me how good our time together has been and the tears start anew. I love you. I can't say it enough. I ... love... you.
There are so many things that I wanted to do with you over the years; growing old with you was just one of many - now..., .... now..... I'm just at a loss for words. Why are we here? Why did this have to happen? We have been married for almost ten years ...ten loving years....and it's not wrong that I want it to go on with you because it's been wonderful. I'm loosing my best friend. I'm loosing apart of me...and there is nothing I can say to make you feel better about the situation. There's nothing I can do and the helplessness that I have is tearing me apart.
I love you.
The song keeps playing in my head and I do not know why. I've been writing all my life but now it's so hard to formulate a cohesive sentence that all I can say is that I love you.
"I just want to be there
When were caught in the rain
I just want to see you laugh not cry
I just want to feel you
When the night puts on its cloak
I'm lost for words don't tell me
All I can say
I love you till the end" - Love you till the EndThe Pogues.
I feel like we are coming to a fixed point in time.
I feel like we are coming to a fixed point in time which cannot be changed.
I feel like we are coming to a fixed point in time which cannot be changed once it is played; the thoughts are circular in motion and the only way I am going to get them out is to write them down. And I lament that it isn't going to be written on parchment in black ink that stains my flesh. I lament that it isn't written by candle light in which my eyes strain to see my own words against the backdrop of an old world etched upon the Earth. For our lives seem like the back story to a tale that only Austen or Bronte could have written. It's painful and you only get to skim the details yet there is so much more to be said, but then the reader moves on with the main story and those back story characters are merely a memory slowly fading into haze.
But I'll remember.
"I just want to see you
When you're all alone
I just want to catch you if I can
I just want to be there
When the morning light explodes
On your face it radiates
I can't escape
I love you 'till the end"
I love you. We've said it to each other a great deal over the last two years since this chapter of our lives has begun, so I hope that its meaning has not been lost. I love you J.J. I love your smile, your blue eyes - I love your mind.
I want more though. I want more time to talk with you. To sit across from one and other and stare into each others eyes. Warranted when we did that it was a competition to see who would look away first in order to establish the Alpha dog of the relationship - yet it always made us laugh, even now when we do it when you're lying down in a hospital bed or on the lounge back at home it still sends us laughing.
I have loved laughing with you and at you - the way your eyes crinkle and you snicker at whatever it is that is making you laugh.
My heart is breaking.
My heart is breaking into tiny fragments, exploding outward in slow motion from my chest. It's in trouble and it's because my heart knows it is loosing you. Oh God....it hurts so much and your not even gone yet. Some nights when your not with me, be it from being in hospital or you are just up coping with your illness when you are home, I feel your hand touch mine, your fingers interlace with my own and I'll wake from the dream to realise that you weren't even there. My lips will feel like they have been lightly yet tenderly kissed by you, yet you weren't there - I wondered if that is what is going to happen when you are gone.
Everyday my soul is a little less brighter than it should be - I can't say that it is dying for our daughter is holding it firmly in her grasp - but know that's it's pallor is less brighter every day closer to the final day.
It's so ridiculously stupid when I say that I didn't expect this so soon. I mean we have been going along, doing treatments, always promising to go on that holiday when you were feeling up to it - but you never felt up to it - and now I'm surprised that in a few months you could be gone from my grasp. Now we are talking about ringing the funeral homes, buying the final resting place for your ashes, working out the details that only death can bring...and I'm stupidly surprised by it all.
"I just want to tell you nothing
You don't want to hear
All I want is for you to say
Why don't you just take me
Where I've never been before
I know you want to hear me
Catch my breath
I love you till the end"
I sit here crying, the tears rolling off my cheeks onto my chest and I know it is not doing anything. It doesn't help you and it doesn't help me and I want to be cold, and unfeeling yet every time I try the warmth of your love reminds me how good our time together has been and the tears start anew. I love you. I can't say it enough. I ... love... you.
There are so many things that I wanted to do with you over the years; growing old with you was just one of many - now..., .... now..... I'm just at a loss for words. Why are we here? Why did this have to happen? We have been married for almost ten years ...ten loving years....and it's not wrong that I want it to go on with you because it's been wonderful. I'm loosing my best friend. I'm loosing apart of me...and there is nothing I can say to make you feel better about the situation. There's nothing I can do and the helplessness that I have is tearing me apart.
I love you.
The song keeps playing in my head and I do not know why. I've been writing all my life but now it's so hard to formulate a cohesive sentence that all I can say is that I love you.
"I just want to be there
When were caught in the rain
I just want to see you laugh not cry
I just want to feel you
When the night puts on its cloak
I'm lost for words don't tell me
All I can say
I love you till the end" - Love you till the EndThe Pogues.
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