(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)
Lily:
How do you tell your child that her father is dying?
The sentence itself is weighty. Standing alone it speaks volumes. It hangs around my neck like the albatross to the mariner. In truth when I started taking Arwyn to the child psychologist (Mrs M), I think my selfish aim was to have Mrs M do it for me. It was the whole reason why I was paying her - she could take that responsibility from me thereby making my life easier.
But she didn't tell Arwyn - we did.
Going to Mrs M is probably the best thing I have done throughout this chapter of our lives because it allowed me to discuss with someone who wasn't connected to us emotionally, and put forth what I was going to say for review. Mrs M could let me know if I was saying the right thing or not. Guide me as I guided Arwyn.
Arwyn is the perfect daughter. I know, bias right because I am her mother. But you have no idea how wonderful she truly is. How understanding she has been throughout this. How compassionate and loving towards her father. We have asked a great deal of her throughout all of this and all she has asked for in return is our love. The reassurance that everything is going to be okay.
We sat her down in the lounge room and brought it back to a context she would understand - our previous cat "Arch" who had died. Arwyn knew that her father was sick, knew that the sickness was called cancer yet didn't know what cancer was. We explained that soon, daddy would get sicker and die and that she and I would never see him again, " Not even on birthdays?", Not even on birthdays darling. "But what will happen to all his Christmas presents?" He won't get Christmas presents. "Ohhh Daddy." To which she hugs J.J. Not a moment later she has jumped off his lap and asked ' Mummy, let's go out and play." With a big smile on her face. We explain to her further the implications of J.J's death, the details not necessary yet we decide on utilising the idea of heaven as an idea for her to get attached too. Mrs M has concurred that children cope better when they do have something to hope for, and the hope that Arwyn will carry with her that one day she will get to see her father in Heaven is not a bad idea; hope is never a bad thing.
Once Arwyn and I discuss the idea of Heaven further while in the backyard playing, her little five year old mind starts with the questions.
Are there waterslides in Heaven?
How do you eat in Heaven?
What if you get thirsty?
Where do you sleep?
Can we visit Daddy?
You smile, you laugh and your heart breaks a little...
J.J.
It was a rough day, we'd decided that the time had come to tell Arwyn that I was going to die. I don't know what the catalyst was that prompted us, it was most likely the arrival of the palliative care equipment at home - wheelchair, wheelie walker, hospital bed etc. We sat her down and asked some questions, about me being sick, not getting better, what was wrong with me, etc. When we asked her what cancer was she responded with saying it was something in my arm and head. At which point she bent forward and gave me a kiss on the forehead.
*Fuck*
As if this wasn't gut wrenching enough, she's got to be her compassionate, caring, loving self. Now, I need a moment to compose myself, so Lily takes over for a bit.
We explain about Arch, we explain about heaven - thankfully her school has already talked about heaven, making it a bit easier, we just needed to tell her that there are differences in heaven. Her only concept so far being what had come from her catholic school.
Then came the questions about heaven over the next few days, just as Lily explained above.
It's now a few weeks later, the days are now measured in good, average, poor and bad. The good days are fewer than they were, its now a toss up between average and poor, poor and average, with bad ones sneaking in. This morning was a bad one - a lot of pain, pain that I couldn't hide or mask- vocal, verbal, visual. It frightened her, I'm certain of it. After the pain killers have settled in and I'm composed, it's time to set her down and have another chat.
I sit her down on the wheelie walker, and we talk about me dying, going to heaven, that she shouldn't be scared, and that I'll need plenty of hugs and kisses to help me feel better and get through. Well, the selfish ploy worked and I got hugs and kisses a plenty as well as an improvised story of Rapunzel.
However, it has made me reconsider how long I will be able to stay at home. I truly want to be at home until the very end, but I don't want to traumatize our little princess. I don't want her memories to be of me writhing in pain - moaning, swearing, agonising or aggressive.
I don't want Lily to see me that way either, it's not easy to explain death to a five year old, its even harder to explain it to an adult, and to myself. As I keep saying, everyday I finish still breathing is a good one, and as the family we are, we'll keep taking them as they come.
Tuesday, 8 May 2012
Monday, 7 May 2012
Auto-pilot
(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)
I have ceased to exist...and I feel nothing. Auto-pilot. There is no better apt description than that to explain who and what I am. Everything is without thinking, without feeling. Something needs to be done and I will do it. J.J needs help getting out of bed and my covers are thrown back, the lack of sleep instantly forgotten and I am there for him. Arwyn will need help getting ready for her day and once J.J is settled, my attention is immediately transferred to her. At times it is a tug of war between the two. And it will never be a fight of whose needs are greater for both will be taken care of, everything will get done. I move from one to the other, back and forth, back and forth. Auto-pilot.
J.J's needs have increased, his pain has increased and he is vocal in expressing his pain (a natural occurrence). I'll move from room to room attending to his needs, getting his pills, assisting as needed:- mother auto-pilot will also take over as I shield Arwyn from as much of her father's pain as I can.
Thought ceases, muscle memory takes over. To the fridge, take out the margarine and spread for toast, Vegemite for her, marmalade for him. She'll want a drink, don't forget that. He needs water, orange juice, medication - toast down, banana for her, sausage for him. Cats meow for their food, ignore for the moment then feed once Dr Seuss lays on her back in front of my feet looking cute and adorable. Television on, heat pads for J.J's back in microwave. Sit down at computer for three minutes, remove heat pads, apply to his back. He'll moan slightly, I'll look at him to see if it is something I can assist with. Shower, he needs the relief of a shower. Assist with walking, moving to the back room, down the step, into the shower. Remove clothes, run water, check temperature, he's all good now, I can go.
I don't know where I am anymore, I don't know who am I, except I am theirs.
The days continue like this, they become white noise as memories fade of them, for it's the same day after day.
"Lil / Mummy can I have...."
"As you wish".
I have ceased to exist...and I feel nothing. Auto-pilot. There is no better apt description than that to explain who and what I am. Everything is without thinking, without feeling. Something needs to be done and I will do it. J.J needs help getting out of bed and my covers are thrown back, the lack of sleep instantly forgotten and I am there for him. Arwyn will need help getting ready for her day and once J.J is settled, my attention is immediately transferred to her. At times it is a tug of war between the two. And it will never be a fight of whose needs are greater for both will be taken care of, everything will get done. I move from one to the other, back and forth, back and forth. Auto-pilot.
J.J's needs have increased, his pain has increased and he is vocal in expressing his pain (a natural occurrence). I'll move from room to room attending to his needs, getting his pills, assisting as needed:- mother auto-pilot will also take over as I shield Arwyn from as much of her father's pain as I can.
Thought ceases, muscle memory takes over. To the fridge, take out the margarine and spread for toast, Vegemite for her, marmalade for him. She'll want a drink, don't forget that. He needs water, orange juice, medication - toast down, banana for her, sausage for him. Cats meow for their food, ignore for the moment then feed once Dr Seuss lays on her back in front of my feet looking cute and adorable. Television on, heat pads for J.J's back in microwave. Sit down at computer for three minutes, remove heat pads, apply to his back. He'll moan slightly, I'll look at him to see if it is something I can assist with. Shower, he needs the relief of a shower. Assist with walking, moving to the back room, down the step, into the shower. Remove clothes, run water, check temperature, he's all good now, I can go.
I don't know where I am anymore, I don't know who am I, except I am theirs.
The days continue like this, they become white noise as memories fade of them, for it's the same day after day.
"Lil / Mummy can I have...."
"As you wish".
Saturday, 21 April 2012
A day in the life of J.J...
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.
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.
Wednesday, 21 March 2012
The truth of the matter
(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)
Blog entry preceding this one is " 19 Things we never thought we would say or do or hear at our age."
Blog entry preceding this one is " 19 Things we never thought we would say or do or hear at our age."
It has been awhile since posts.
The truth of the matter is that life has not exactly been the most pleasurable of times. While J.J and I make our jokes to each other, over the last month they have been few and far between which means writing about life is even harder. It's time now to share the hard parts; it's what we said we would do - write about the good and the bad, and so this is the bad.
To reiterate J.J's cancer is in his right forearm, his lungs, his skull - crushing the brain, and his vertebra. In the last month I have seen J.J in so much pain and discomfort that it has cast a cloud over us. When he is low, I am low. When he pains, I ache and it can be one of those cycles that is hard to escape. I do not know if we are truly out of the darkness just yet for I am at a low myself, the weight of our world presses down upon my shoulders and it is all I can do to stand each morning... but I am trying... I'm trying.
J.J has been having the most horrific of times. When you are on the amount of pain killers that he is on, with the addition of radiation and chemotherapy, it messes up the internal system. We have already had one emergency room visit because of the amount of pain that he has been in. J.J will take the medication that is suppose to alleviate the problem, but the very next day he is back to feeling the pain. And it is probably a combination of the tumours in his vertebra as well as the stomach pain that is making everything unbearable. He is slow in his movements around the house. He is out of breath. He sweats a little harder, he is quick to anger. There are days when he says mean things, not to me, but it is hard to hear him like this. He is very quick to annoyance, especially when he is around our 5 year old little chatterbox. I am always on my toes trying to keep the two separate when he is like this...yet there are times when I am not quick enough and I just have to hope that she was oblivious to his tone.
Side note: The above sentence beginning with "There are days when he says mean things, not to me..." is erroneous. I guess I do not want the outside world to see J.J in a negative light, however he is quick to anger with me as well. He does say mean things to me and I do annoy him ... apparently.
I love him...but I hate him. I hate everything about this and as J.J pointed out today it is probably the side-effects of the radiation treatment to his head.
I love him... but I hate him. I hate him so much - and then I hate myself for hating him since I know that it isn't him, it isn't his true self. But at present, he's a bastard at times and I have to love him because to me, I'm taking care of the man I married, the one who is loving, caring, funny, quick-witted and intelligent - and not this other man who at this particular moment in time, pisses me off. I do not want to talk to him, and I don't want to be around him. And I hate having to pretend that everything is alright, when it clearly isn't. This both blows and sucks!
Taking care of someone who is sick, truly sick and not just a case of man-flu is soul-sucking. There are things you have to do that you didn't think you would ever do.
I love J.J. I love him. I do not question my role as carer - I just get in, glove up, clean and care. Would I rather be on a beach with J.J, soaking up some warming rays poolside? Yes you bet your sweet behind I would but I do this because I am J.J's wife, his lover, his friend - it's cliched but I do it in sickness and in health, I don't question it, I just do it.
It would seem however, that it is hard to do. My last two days have been low. I do not believe J.J's current status is to blame, but I believe it may be a small part of it. I'm 34, I should be taking care of J.J in his last round when we are much older than we are now. We should still be in the phase of our lives where we are making babies, and working and holidaying with family and seeing our daughter grow up. Yet we are not! And thanks to Face book I get to read about others who are doing everything that J.J and I should be doing. Face book is a constant reminder of other people's happiness and at times that can be just as soul-sucking as living the experience of a loved one fighting cancer. It's not that I would deny my friends life joyous events but when it starts happening in stereo, where the number of girls on my friend list who are pregnant goes into double digits I can not but help feel that the world is giving me a "fuck you Lily." And this isn't to say I want my friends to not share with me their joys as then I would feel completely alone. I'm just saying... I'm just voicing why at this particularly moment I am down and what contributes to it.
If that is not enough to put me into a low ebb, I have to think about what happens after J.J has passed away. How do I provide for Arwyn? How do I provide for myself? This isn't to say that Arwyn and I have been living off the fruits of J.J's labour. Far from it, J.J and I have both worked in our jobs since Arwyn has been born; yet it's in trying to keep everything that J.J, Arwyn and myself have now - and keeping it that way after he has gone so that the essence of change isn't too much for Arwyn to bare. I want to keep her in the lifestyle we have. This means providing her with food, shelter and opportunity to become anything she may want to be as adult, that our current double income allows. I feel that we struggle at the moment to provide these things, but we do get there in the end. The thought that I'll have to do the same on one income leaves me without breath as I do not know how to do it - I just don't know. And when I think I have the situation sorted where I know what we will do...a voice will question the choices and there is the seed of doubt.
Everything is hard.
In preparation for J.J's eventual outcome, we have started building a relationship for Arwyn with a Child therapist, to aid (when the time comes), to help explain, to be a mediator - J.J and I do not know how to explain it to her. How do you tell your child that her father is dying? For the moment, the therapist has said that we are better to hold off in telling Arwyn as there is no sense in stressing Arwyn while J.J is still up and about and relatively healthy (as much as one can be with cancer). So we wait.
We shouldn't be here...we shouldn't be at this point in our lives. I feel so incredibly young, J.J is young and here we are, going through life at warp speed.
And I'm drinking.
I'm stressed, and I'm drinking. Not in worrisome amounts, far from it - for Arwyn will always keep me in moderation yet I hate that in this time of stress alcohol helps.
The truth of the matter.
J.J.: Yes I am an arsehole.
I've been short, abrupt, inpatient - really inpatient and I've had the temperament of a rattle snake that you just trod upon.
None of it has been intentional. Not that it's an excuse, for all those that know me even slightly, they know that I can use words to cut and hurt deeply for years to come.
But I am not in a good place at the moment. Mentally, more than physically.
Yes, I am in pain, but it's not constant, it's just when it flairs up for that brief instance that shows outward.
There is a great deal of discomfort from the belly, waterworks and bowel. Most of it caused by the pain killers, the other medications and then added too by the doses of radiation.
Fun.
This part of the experience has made me appreciate the simple things of a proper morning constitutional. The trifecta of crap, coffee, cigarette. I hope those days aren't gone forever and that what my body is doing right now is only temporary.
Because, I can quite honestly say I am full (or at least was) of shit.
This is where the real problem lies - my body is poisoning itself. Can't get rid of the shit - that rubbish needs to go somewhere. Obviously I'm only speculating that's the cause, as I'm not a doctor - but I can pretty much match the times of being a true bastard to when I was most full. It leaves me feeling apathetic, I haven't written in my own blog in roughly three weeks as well. I just haven't been able to think about anything at all. Just writing what I have here is a monumental effort. There is no flow to the words or the direction of what I want to convey.
It's overpowering ennui - you could tell me I'm on fire and I won't have known and would have just gone back to whatever task I was doing (or not doing as I can't concentrate), until you came back ten minutes later - told me the same thing - to which you will get a bark instead of a polite response. You've already told me my brain says - why are you still talking? Please, fucking one time is good enough.
I've been like this before, but never for this long or this badly. Which is why I isolate myself. I don't want to hurt, anger, or be mean to those around me. Especially not Lily and not Arwyn. But, putting up a charade of smiles and happiness is a lot of effort, and I don't have the physical energy to do it either. Also, my memory is shot - so I have no recall of what I might have said or the tone I used. Which sucks, as I can go and piss someone off all over again not remembering I'd already said the same stupid thing.
During these last weeks, Lily has been over and above the call of duty. I can't thank her enough for all that she does around the home, Arwyn, her work, me. Its an astounding amount.
And no amount of thank yous will ever be able to make up for it.
I've been short, abrupt, inpatient - really inpatient and I've had the temperament of a rattle snake that you just trod upon.
None of it has been intentional. Not that it's an excuse, for all those that know me even slightly, they know that I can use words to cut and hurt deeply for years to come.
But I am not in a good place at the moment. Mentally, more than physically.
Yes, I am in pain, but it's not constant, it's just when it flairs up for that brief instance that shows outward.
There is a great deal of discomfort from the belly, waterworks and bowel. Most of it caused by the pain killers, the other medications and then added too by the doses of radiation.
Fun.
This part of the experience has made me appreciate the simple things of a proper morning constitutional. The trifecta of crap, coffee, cigarette. I hope those days aren't gone forever and that what my body is doing right now is only temporary.
Because, I can quite honestly say I am full (or at least was) of shit.
This is where the real problem lies - my body is poisoning itself. Can't get rid of the shit - that rubbish needs to go somewhere. Obviously I'm only speculating that's the cause, as I'm not a doctor - but I can pretty much match the times of being a true bastard to when I was most full. It leaves me feeling apathetic, I haven't written in my own blog in roughly three weeks as well. I just haven't been able to think about anything at all. Just writing what I have here is a monumental effort. There is no flow to the words or the direction of what I want to convey.
It's overpowering ennui - you could tell me I'm on fire and I won't have known and would have just gone back to whatever task I was doing (or not doing as I can't concentrate), until you came back ten minutes later - told me the same thing - to which you will get a bark instead of a polite response. You've already told me my brain says - why are you still talking? Please, fucking one time is good enough.
I've been like this before, but never for this long or this badly. Which is why I isolate myself. I don't want to hurt, anger, or be mean to those around me. Especially not Lily and not Arwyn. But, putting up a charade of smiles and happiness is a lot of effort, and I don't have the physical energy to do it either. Also, my memory is shot - so I have no recall of what I might have said or the tone I used. Which sucks, as I can go and piss someone off all over again not remembering I'd already said the same stupid thing.
During these last weeks, Lily has been over and above the call of duty. I can't thank her enough for all that she does around the home, Arwyn, her work, me. Its an astounding amount.
And no amount of thank yous will ever be able to make up for it.
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