WARNING: I give this warning so that friends and family may choose of their own accord if they wish to read this last post. Some of the details may be disturbing. Some may be hard to read. But this is something I need to do. Nothing is written by J.J, all of this has been written "after". This is Lily. This is my voice, my thoughts... my pain.
Last chance to turn back now.
I hadn't planned on writing one last post, but since June 18th, 2012 my mind has been a constant stream of thoughts in the nighttime. I don't really sleep anymore. It is often a wakeful night, never dreaming, never remembering; but a constant pattern of thoughts, over and over. I forget most of the thoughts by morning's light - lost in a yawn that lasts the entire day. The sun will set, blackness will consume the air and the mind is set adrift the moment a little girl's head falls to the sandman.
I wonder if the reason why I haven't been sleeping is because these thoughts are present. Perhaps if I purge them from my soul now, tonight....ease of sleep may come - I am hopeful.
On June 18th, 2012, J.J lost his battle with cancer.
Every day since then I have missed him. The little things I miss have become the most important. I will think of something funny or clever to say and immediately turn to where J.J once sat, and as I look into the emptiness of time, my mind will finish what I wanted to share and then add as always " This is what I would have said if you had been here my love'.
Our daughter will accomplish something, and I want to tell J.J about it. He is always my first thought. The person in which I wanted to share life's little surprises with.
People tell me I am strong.
That sentence washes over me and is gone in an instant. I do not feel strong, I just am. I just do because I have to.
I do not know if I started mourning J.J's death the moment we got the diagnosis - that wasn't being negative, more realistic than anything else considering the initial diagnosis. And while I feel J.J received good care during the course of his treatment, many mistakes were made which I feel contributed in the end to his departure. Human error, it's a marvellous thing - also the ability us humans have in laying the blame anywhere but on ourselves. No one wants to be responsible. No one wants to step up and say " This was my error, I'm sorry. Let me do everything in my abilities to right this wrong". And I feel that this is what happened in J.J's case. Too many departments handling his case, no one working together, each a separate entity never realising they were working towards the same goal - to save J.J. I suppose this thought has been ever present since my own conflict with the same hospital that was treating J.J - I was told by a doctor in the maxillio-facial clinic that I was no longer his concern because he was a surgeon and surgeons didn't care once the operation was over. That statement has weighed heavy and continues to be present in my mind. How true is the statement? I guess a lifetime of watching movies and television which portrays a medical viewpoint has blinded me into thinking surgeons may care... a naive statement I know, but it's that hope, that when myself or someone I love dearly is on an operating table, that the surgeon actually cares about my life, my loved one's life.
Two and a half years of emotional torture - that is what Arwyn and I have endured. When you watch someone you love die, there are no words to describe the wretchedness of how you feel. My soul has been torn from my body a thousand times over in those last weeks as I sat with J.J. Watching him in the pain he was in, never been able to get on top of it - the little soul that I have left is being held together by the love of our daughter. I feel I have been eviscerated. Hung, drawn and quartered. I never want to watch another human being, let alone someone I love die again - the tears have flooded my life yet they have also dried up as well.
I have changed.
I'm still me, but I have changed.
Death is inevitable... that isn't going to change. But I can. The fear I once had has gone. I live in the moment now...something I should have always sought to do with my life.
When I made the decision to place J.J into the palliative care ward for the last time, it was with a heavy and burdened heart. Immense guilt consumed my core. I knew J.J wanted to die at home (if he could) - but as his carer, I just couldn't get him to a place without pain. I lacked the resources and while the care provided by the nurses who came and visited - it just wasn't enough to sustain him throughout the night. Constant pain. Constant, bone-breaking pain. And I was helpless. I didn't know what to do. He would moan in pain throughout the entire night and I couldn't help him - guilt.
Finally, in the last few days, his meds were increased.....but I lost J.J to the euphoria of the narcotic. He slept...he no longer ate, he was aware of me, and tell me that he loved me and then his eyes closed once more.
I spent my days with J.J, holding his hand, trying to get him to eat, keeping him calm with my presence. When I eventually had to get up and go and pick up Arwyn from school my heart ached that I had to leave him but I had no choice as I was torn between him and Arwyn. The worse thing was that JJ wanted to get up and leave with me. He would throw back the covers of the bed, his legs caught up in the sheets and try to get up and walk out the door with me. I had to calm him down, he had lost the ability to walk and stand on his own - bed bound - yet he still wanted to come with me. I never wanted two of me until this moment. One to be with him, and one to be with her. He had my days, she had my nights and every time I left him, I made sure to tell him how much I loved him and that it was okay to go if he wanted.
I think it was the Saturday morning that the doctors decided to put J.J into a sleep-induced coma. J.J was informed of this and asked if he could speak with me first. I hadn't arrived at the hospital yet that morning as it was still early and I was getting Arwyn ready for the day. J.J had the nurse ring me and it was over the phone that we had our second last conversation. J.J wanted to tell me so many things before he went under. How much he loved me, how much he loved Arwyn. I told him that everything was going to be alright and that we loved him so much and the time we had together while not long enough was spent in happiness. I thanked him for Arwyn, for giving me the most beautiful daughter in the world. I told him I would take care of her and make sure that she wouldn't forget him. And then I kept saying I love you...I love you..., I love you....., until the nurse hung the phone up.
Silence.
Oh God! It was wretched. Unbelievable pain.
When I arrived at the hospital, thankfully J.J wasn't completely under yet. We were able to have one last conversation, say the most important things and then he was finally asleep and calm.
I held his hand the entire time, he was so warm, almost hot. This surprised me, it really did. I spent the weekend with him. Friends of J.J's from his work came and visited, said their goodbyes - talked with me. And then together J.J and I were alone. I closed his room door, and closed the curtains and just sat with him.....and waited.
Nurses would come in every now and again and check on me. Sometimes I would ring for them as J.J seemed distressed at times....they would give him a shot of morphine mixed with other things and his face would relax.
Monday arrived - the 18th. Arwyn had "Grandparents" day at school. I spent an hour at the school with her and her Poppy and then rushed up to the hospital. When I saw J.J, I knew today was going to be his last day. I held his hand. Again it was so warm. I rested my face on his hand and fell asleep against him for the last time. I still remember his touch and the warmth. The doctors said it may take awhile with J.J because he was so young. But somehow, I knew..... I stayed longer with him that day - I didn't want to leave him. I kept telling him that it was "Okay to go"....repeating this several times. It was until just after 5pm that I made the decision to go home to make sure Arwyn was alright. I made sure I told J.J how much I loved him - I made the last kiss goodbye, last as long as I could. I walked out the door, spoke with the nurse and said " I bet you he'll go tonight. He's doing the gentlemanly thing by waiting for me to go, cause he doesn't want me to see that last moment."
And I left.
We only lived five minutes from the hospital. I drove home, got upstairs, got Arwyn dinner and then the phone rang - J.J was gone.
Typical reaction from me " That bastard - I knew he was waiting for me to go." A slight smile came across my face - and then there was relief. He was no longer in pain. He was no longer in pain. He was finally.... no longer in pain.
After watching J.J go, I am now fully in support of euthanasia. J..J should have been able to choose when he wanted to go. He could have been at home, with me and he could have made the decision on his own and go before the pain became too much. Instead he had to endure days of pain; I had to watch. Nobody deserves to die like that - nobody.
I loved J.J. A part of me will always love him.
Thank you for reading, if you actually read this. This will be last post I make in this blog. I plan on keeping it around for Arwyn to read when she is older. If you knew J.J, I ask you to go and make comments, share stories about him here, so that Arwyn may know a side of J.J that perhaps slipped my mind.
While it is the end for this chapter of our lives...Arwyn and I begin a new one, together as mother and daughter, with J.J watching over us, if only in our minds and heart.
Monday, 6 August 2012
Tuesday, 8 May 2012
Death & a five year old.
(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.
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.
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.
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