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.
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.
Saturday, 25 February 2012
19 Things we never thought we would say or do or hear at our age.
(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 " Dem Bones, Dem Bones".
1: Searching the Internet for urns.
J.J has decided on cremation which suits me as that is what I have also chosen for my remains. J.J wants a 2001 space odyssey monolith while I want something a little more functional as J.J should be functional in his after-life hence wanting a clock urn, that way I'll get to refer to him as Father-Time for Arwyn.
2: Lily: " So when your time comes, where do you want to die?"
J.J: "At home, with you and Arwyn".
Lily: "Which room?"
J.J: " Our room."
Lily: " Really?... On our mattress? The one I have to sleep on after your dead?"
J.J: " Yes of course, and I want you to hairspray my indent so it stays for all eternity".
J.J: (a few minutes later) "And, I meant, WITH you and Arwyn." (Lily gives J.J a dead-pan look of "fuck you, we aren't all dying together as a family - that ain't happening").
3: J.J: I want to be stuffed and mounted on the lounge chair as a constant reminder to you of our love.
4: Lily: "You are not allowed to have your ecto-plasmic way with unholy spirits in the after-life, you have to wait until I'm there." (three minutes later) " Okay....that's being unfair, you can whore around with some spirits but when I die all of that loving comes my way".
5: Trying to give J.J a " stop being depressed" speech the following is said:
Lily: "Honey, look, I know there is nothing I can say to get you out of being depressed. You deserve to have your moments to wallow. But you're not dead yet, so stop living like you are. I mean I could get hit by a bus tomorrow."
J.J: " That would be convenient."
Lily: (double-takes) ,"What the fuck? Up yours, I plan on living forever!"
6: Lily thanking J.J for having Cancer as it has become a perk to get out of going to social events.
7: Upon being told that J.J had cancer, Lily got teary and then said " Great! You'll do anything to beat me at losing weight.
8: Lily & J.J discussing death.
(WARNING - Lily discussing sex, family/friends avert your eyes)
Lily: Well, at least you are going before me - I always wanted you to be the first to go.
J.J: That's fine, cause then I get to go and have ghost sex with Marilyn Monroe.
Lily: Fine, do that then. You go and have sex with some dead lazy cow, I'll be here on earth having sex with machines for the rest of my life (pretends to sob). (Both go into a fit of giggles).
9:
J.J: Trying to figure out which of my single friends I should push for a hook up with Lily after I'm gone.
Lily's take on it is more of "you're trying to pimp me out"?
J.J: "I was thinking more along the lines of Moe Sizlak showing up to court Marge when he thinks Homer is dead. I'd do the same for all of my friends".
Lily: "That sounds worse, so you'd turn me in for a friends widow? Is that the epitome of bro's before ho's"?
J.J: "No, of course not, I'm just trying to find someone who will be able to financially take care of you and won't be able to live up to me in anyways whatsoever. But is still considered a catch.
10: J.J & Lily playing cards while J.J has chemo.
Lily: Look, just because you have cancer, don't expect me to go easy on you. I play to win. I plan to crush you into the ground with my heeled boot.
(later on during more cards)
Lily: Look you got cancer of your own free will, so I ain't going to let you win.
11: Lily taking advantage of J.J in his painkiller / chemo sleep deprived state by using the newly bought label maker (Arwyn's first year of school = a given purchase) to stick a label on J.J's butt with " Property of Lily's, hands off!"
12: During Radiation Arwyn has us both worried:
On the way too and from the hospital we have to drive past a cemetery, today as we drove past, from the back of the car we hear Arwyn say excitedly, " Look, there's the cemetery." a few moments later in a forlorn voice she follows up with " I wish I was in there."
Blog entry preceding this one is " Dem Bones, Dem Bones".
1: Searching the Internet for urns.
J.J has decided on cremation which suits me as that is what I have also chosen for my remains. J.J wants a 2001 space odyssey monolith while I want something a little more functional as J.J should be functional in his after-life hence wanting a clock urn, that way I'll get to refer to him as Father-Time for Arwyn.
2: Lily: " So when your time comes, where do you want to die?"
J.J: "At home, with you and Arwyn".
Lily: "Which room?"
J.J: " Our room."
Lily: " Really?... On our mattress? The one I have to sleep on after your dead?"
J.J: " Yes of course, and I want you to hairspray my indent so it stays for all eternity".
J.J: (a few minutes later) "And, I meant, WITH you and Arwyn." (Lily gives J.J a dead-pan look of "fuck you, we aren't all dying together as a family - that ain't happening").
3: J.J: I want to be stuffed and mounted on the lounge chair as a constant reminder to you of our love.
4: Lily: "You are not allowed to have your ecto-plasmic way with unholy spirits in the after-life, you have to wait until I'm there." (three minutes later) " Okay....that's being unfair, you can whore around with some spirits but when I die all of that loving comes my way".
5: Trying to give J.J a " stop being depressed" speech the following is said:
Lily: "Honey, look, I know there is nothing I can say to get you out of being depressed. You deserve to have your moments to wallow. But you're not dead yet, so stop living like you are. I mean I could get hit by a bus tomorrow."
J.J: " That would be convenient."
Lily: (double-takes) ,"What the fuck? Up yours, I plan on living forever!"
6: Lily thanking J.J for having Cancer as it has become a perk to get out of going to social events.
7: Upon being told that J.J had cancer, Lily got teary and then said " Great! You'll do anything to beat me at losing weight.
8: Lily & J.J discussing death.
(WARNING - Lily discussing sex, family/friends avert your eyes)
Lily: Well, at least you are going before me - I always wanted you to be the first to go.
J.J: That's fine, cause then I get to go and have ghost sex with Marilyn Monroe.
Lily: Fine, do that then. You go and have sex with some dead lazy cow, I'll be here on earth having sex with machines for the rest of my life (pretends to sob). (Both go into a fit of giggles).
9:
J.J: Trying to figure out which of my single friends I should push for a hook up with Lily after I'm gone.
Lily's take on it is more of "you're trying to pimp me out"?
J.J: "I was thinking more along the lines of Moe Sizlak showing up to court Marge when he thinks Homer is dead. I'd do the same for all of my friends".
Lily: "That sounds worse, so you'd turn me in for a friends widow? Is that the epitome of bro's before ho's"?
J.J: "No, of course not, I'm just trying to find someone who will be able to financially take care of you and won't be able to live up to me in anyways whatsoever. But is still considered a catch.
10: J.J & Lily playing cards while J.J has chemo.
Lily: Look, just because you have cancer, don't expect me to go easy on you. I play to win. I plan to crush you into the ground with my heeled boot.
(later on during more cards)
Lily: Look you got cancer of your own free will, so I ain't going to let you win.
11: Lily taking advantage of J.J in his painkiller / chemo sleep deprived state by using the newly bought label maker (Arwyn's first year of school = a given purchase) to stick a label on J.J's butt with " Property of Lily's, hands off!"
12: During Radiation Arwyn has us both worried:
On the way too and from the hospital we have to drive past a cemetery, today as we drove past, from the back of the car we hear Arwyn say excitedly, " Look, there's the cemetery." a few moments later in a forlorn voice she follows up with " I wish I was in there."
WTF?? This coming from a 5 year old? I didn't expect this emo phase to be in so soon. Oh my god, Oh my god, oh my god, oh my god, my little girl is depressed - - This ranting goes on in my head for what seems an hour, worrying about Arwyn being melancholy at such a young age etc - thinking it should all be sunshine and lollipops.
In reality barely a few seconds go by where we ask her why she wants to go to the cemetery. Arwyn continues her train of thought with " Well, that's where all the mysteries are solved and Freddy"
Oh THANK THE POWERS THAT BE, it was just a Scooby Doo reference.
13: Lily: Hearing my aunt tell my husband that he is going to hell just because he doesn't have "trust in god" - further hearing her say it is god's plan which I just cannot abide. I usually do not care who people worship - Beelzebub, Allah, Zeus, the TV it doesn't matter to me. I don't care if you have a partiality to a cow, a goat, a monkey, a rat. You can be black, white, red, yellow, green. You can prefer men over women, women over men, - I support gay marriage, I believe it's a woman's right to choose but if you ever set foot into my house again aunt and say anything again to my husband or me or our daughter I will personally bend you backwards so you can kiss your own arse goodbye - now GOOD DAY!
Grrrrr.
14: During a routine doctor's appointment, J.J mentions out of the blue that he likes having the clock radio (that Lily bought yesterday morning) back in the bedroom.
Lily: "It's a new one".
J.J: " Really? I didn't notice."
Lily: "Yeah I bought one yesterday, I threw the old one out ages ago it was so dusty, dirty and old."
J.J: " Just so long as you don't throw me out when I get all dusty and dirty and old as a clock" (in reference to his urn choice).
(Both giggle away).
15: J.J after forgetting to take a pill this morning, never thought he would need the pill-box Lily suggested buying, especially at the age of 40 " I feel so old". *sniff*
16: Lily who is at times in awe of J.J's music knowledge and taste, never thought she would hear the song "30,000 Pounds of bananas" by Harry Chapin (who the fuck is Harry Chapin? - I still don't the fuck know!) on the way back home from radiation - and that it perked J.J up like he was at Disney World. Really honey? Take a listen gentle folks...
17: Yes, I've already spoken about this in Week 2 of radiation but it just defies comprehension. While I understand that having a spouse who has a terminal illness my life will be 99.9% taken up with his needs - I have no problem with that, I signed on for this when I married him in sickness and in health .... but really doc, can I just have my pap smear be about me and my vagina???
"Now... throughout J.J's cancer treatment, my own treatments have taken a backseat; J.J and I will often joke around saying he " stole my thunder". I've never had a problem with it ... until today.
I needed to have a physical performed for my work, as well as a routine Pap Smear (WARNING - I am going to speak about the lady bits here). It is in the middle of the Pap Smear that my doctor who has their fingers way up where the sun don't shine, starts talking to me about J.J - How is he? How's he going? Any problems? How's his treatment? - WTF? Excuse me, this is one of the most uncomfortable and somewhat humiliating exams a woman can have, your pressing on my ovaries and basically using your fingers as a swizzle stick, CAN WE PLEASE JUST FOCUS ON ME FOR A MOMENT??!!!
18: While hanging a large picture frame above our bed, J.J informs me that one hook would be sufficient instead of the three that I am hammering into the wall.
"Lil, you only need one, I promise".
" Noooo, what if the picture falls in the middle of the night and hits you on the head where the tumour is. It'll pop it like a pimple and the gunk that would come out would spray over me - that imagery & cleanup is not what I need in the middle of the night - nope three picture hooks it is".
19: So the two of us are watching the pilot episode of "Suburgatory" , and after the dinner scene in which dad and daughter argue with the daughter saying " You ruined my life!", for having moved her from the city to the suburbs, the following conversation takes place.
J.J turns to Lily and says, " You realise this is the argument that Arwyn would be having with you, if I was to die when she was 15 and you move away from here".
Lily replies with " Nah, wouldn't matter, where we live now still sucks. she'd be happy we left." Lily laughs and continues a little more sincere with the reply, " Why can't you die when she is 15?"
J.J looks back incredulously thinking " You want me to keep living like this for another ten years?" Horrified at the idea of the pain and suffering.
Lily: "Ah well, no of course not - I meant you be healthy until then - and then die!"
13: Lily: Hearing my aunt tell my husband that he is going to hell just because he doesn't have "trust in god" - further hearing her say it is god's plan which I just cannot abide. I usually do not care who people worship - Beelzebub, Allah, Zeus, the TV it doesn't matter to me. I don't care if you have a partiality to a cow, a goat, a monkey, a rat. You can be black, white, red, yellow, green. You can prefer men over women, women over men, - I support gay marriage, I believe it's a woman's right to choose but if you ever set foot into my house again aunt and say anything again to my husband or me or our daughter I will personally bend you backwards so you can kiss your own arse goodbye - now GOOD DAY!
Grrrrr.
14: During a routine doctor's appointment, J.J mentions out of the blue that he likes having the clock radio (that Lily bought yesterday morning) back in the bedroom.
Lily: "It's a new one".
J.J: " Really? I didn't notice."
Lily: "Yeah I bought one yesterday, I threw the old one out ages ago it was so dusty, dirty and old."
J.J: " Just so long as you don't throw me out when I get all dusty and dirty and old as a clock" (in reference to his urn choice).
(Both giggle away).
15: J.J after forgetting to take a pill this morning, never thought he would need the pill-box Lily suggested buying, especially at the age of 40 " I feel so old". *sniff*
16: Lily who is at times in awe of J.J's music knowledge and taste, never thought she would hear the song "30,000 Pounds of bananas" by Harry Chapin (who the fuck is Harry Chapin? - I still don't the fuck know!) on the way back home from radiation - and that it perked J.J up like he was at Disney World. Really honey? Take a listen gentle folks...
17: Yes, I've already spoken about this in Week 2 of radiation but it just defies comprehension. While I understand that having a spouse who has a terminal illness my life will be 99.9% taken up with his needs - I have no problem with that, I signed on for this when I married him in sickness and in health .... but really doc, can I just have my pap smear be about me and my vagina???
"Now... throughout J.J's cancer treatment, my own treatments have taken a backseat; J.J and I will often joke around saying he " stole my thunder". I've never had a problem with it ... until today.
I needed to have a physical performed for my work, as well as a routine Pap Smear (WARNING - I am going to speak about the lady bits here). It is in the middle of the Pap Smear that my doctor who has their fingers way up where the sun don't shine, starts talking to me about J.J - How is he? How's he going? Any problems? How's his treatment? - WTF? Excuse me, this is one of the most uncomfortable and somewhat humiliating exams a woman can have, your pressing on my ovaries and basically using your fingers as a swizzle stick, CAN WE PLEASE JUST FOCUS ON ME FOR A MOMENT??!!!
18: While hanging a large picture frame above our bed, J.J informs me that one hook would be sufficient instead of the three that I am hammering into the wall.
"Lil, you only need one, I promise".
" Noooo, what if the picture falls in the middle of the night and hits you on the head where the tumour is. It'll pop it like a pimple and the gunk that would come out would spray over me - that imagery & cleanup is not what I need in the middle of the night - nope three picture hooks it is".
19: So the two of us are watching the pilot episode of "Suburgatory" , and after the dinner scene in which dad and daughter argue with the daughter saying " You ruined my life!", for having moved her from the city to the suburbs, the following conversation takes place.
J.J turns to Lily and says, " You realise this is the argument that Arwyn would be having with you, if I was to die when she was 15 and you move away from here".
Lily replies with " Nah, wouldn't matter, where we live now still sucks. she'd be happy we left." Lily laughs and continues a little more sincere with the reply, " Why can't you die when she is 15?"
J.J looks back incredulously thinking " You want me to keep living like this for another ten years?" Horrified at the idea of the pain and suffering.
Lily: "Ah well, no of course not - I meant you be healthy until then - and then die!"
Thursday, 23 February 2012
Dem Bones, Dem Bones.
(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 " Week 4.25 of Radiation:".
WARNING: Icky photo warning of post-surgery pictures, past and present.
" The toe bone connected to the heel bone,
The heel bone connected to the foot bone,
The foot bone connected to the leg bone,
The leg bone connected to the knee bone,
The knee bone connected to the thigh bone,
The thigh bone connected to the back bone,
The back bone connected to the neck bone,
The neck bone connected to the head bone,
Oh, hear the word of the Lord!" - Words (Unknown), Melody by James Weldon Johnson (1871-1938) "Dem Bones".
Lily: Apologies if the song is now stuck in your head yet when I was thinking about this post, about my upcoming operation associated with my bone disease, the song got stuck in my head and so I pass it to you as the gift that keeps on giving.
Well, on the 20th of February I'll be heading into hospital to have my first major operation in over eleven years. I'm having a maxilla osteotomy; having the bone from the roof of my mouth cut out, shaving away bone on the cheek; and moving my nose a little, for it had been pushed out of place by the diseased bone. I'm loosing three more teeth on the upper right side. This displeases me... there's only so much "freak" one person can take and to loose more teeth, not through poor hygiene or an accident but because I was unlucky enough to be born with a rare disease that weakens bone.
I've spoken about the disease before - "Polyostotic Fibrous Dysplasia" (PFD) - the following web link is probably the best and most accurate for further information should you be so inclined to know more.
Fibrous Dysplasia.Org
This operation is overdue. I've become "aware" of the pain that the PFD is causing in my skull and when you become aware of it, sometimes it's the only thing you can focus on. Yet J.J came first. I pushed the pain aside, endured it - endure it still. In light of him becoming terminal we decided that it would be better to have the operation before J.J passes away so as not to stress Arwyn out in the wake of loosing one parent.
I'll be having an Osteotomy - basically the bone being cut out of my face. It is all done through the mouth so no cutting of skin, yet my mouth will be stretched out in all directions and the roof of my mouth cut with the bone being dislodged and realigned.
Not pleasant let me tell you, I've had this type of operation before.
The following photos are the aftermath of past osteotomies, not many people have seen these so please...feel honoured.
The lying down photos were probably taken the day I got home from the hospital.
These next two photos were taken with another operation, about 2 to 3 weeks after the op. I was in my twenties with these photos, I wonder how my 30-something body will heal?
Blog entry preceding this one is " Week 4.25 of Radiation:".
WARNING: Icky photo warning of post-surgery pictures, past and present.
" The toe bone connected to the heel bone,
The heel bone connected to the foot bone,
The foot bone connected to the leg bone,
The leg bone connected to the knee bone,
The knee bone connected to the thigh bone,
The thigh bone connected to the back bone,
The back bone connected to the neck bone,
The neck bone connected to the head bone,
Oh, hear the word of the Lord!" - Words (Unknown), Melody by James Weldon Johnson (1871-1938) "Dem Bones".
Lily: Apologies if the song is now stuck in your head yet when I was thinking about this post, about my upcoming operation associated with my bone disease, the song got stuck in my head and so I pass it to you as the gift that keeps on giving.
Well, on the 20th of February I'll be heading into hospital to have my first major operation in over eleven years. I'm having a maxilla osteotomy; having the bone from the roof of my mouth cut out, shaving away bone on the cheek; and moving my nose a little, for it had been pushed out of place by the diseased bone. I'm loosing three more teeth on the upper right side. This displeases me... there's only so much "freak" one person can take and to loose more teeth, not through poor hygiene or an accident but because I was unlucky enough to be born with a rare disease that weakens bone.
I've spoken about the disease before - "Polyostotic Fibrous Dysplasia" (PFD) - the following web link is probably the best and most accurate for further information should you be so inclined to know more.
Fibrous Dysplasia.Org
This operation is overdue. I've become "aware" of the pain that the PFD is causing in my skull and when you become aware of it, sometimes it's the only thing you can focus on. Yet J.J came first. I pushed the pain aside, endured it - endure it still. In light of him becoming terminal we decided that it would be better to have the operation before J.J passes away so as not to stress Arwyn out in the wake of loosing one parent.
I'll be having an Osteotomy - basically the bone being cut out of my face. It is all done through the mouth so no cutting of skin, yet my mouth will be stretched out in all directions and the roof of my mouth cut with the bone being dislodged and realigned.
Not pleasant let me tell you, I've had this type of operation before.
The following photos are the aftermath of past osteotomies, not many people have seen these so please...feel honoured.
The lying down photos were probably taken the day I got home from the hospital.
These next two photos were taken with another operation, about 2 to 3 weeks after the op. I was in my twenties with these photos, I wonder how my 30-something body will heal?PRE-ADMISSION:
Lily: Today (16/2/12) I attended the pre-admission clinic, a five hour long appointment in which I see a member of the surgical team, the anaesthetist, a nurse, the pharmacist. They sell you on this appointment by letting you know it'll take four to five hours. Awesome! However, lucky am I, I'm in and out in under two hours. The only person I care about seeing is the anaesthetist - they are the ones who can write in my chart permission to give me a "relaxing" pill before the surgery. I'm good - usually, but on the morning of the op day, I freak out. I become a little bitch and start twitching with nervous anxiety. I express this to the anaesthetist in detail and she writes me up for at least 20 milligrammes of temazapan for the morning of my op. She even suggests that I take some MS contin (morphine) when I wake up to aid my "mellow" groove.
THE DAY BEFORE:
Lily: Sunday morning and my sister wakes me at 8:30am by sending me a text message asking if I had heard from our dad who is driving up to help take care of me, the house but mainly Arwyn. As children we are forcing him to do the twelve hour drive over two days to make it easier for him, yet of course we still worry - my sister worrying the most however, since I was quite happy to wait until lunchtime (proposed arrival time) before I started my worrying.
My dad is turning 72 this year and he must have access to a fountain of youth drip-line since he doesn't look like other 71 year olds. I'm not saying he looks twenty or anything, but he still looks the same to me as what he does when he was 50. His hair is still black with only whispers of grey/white starting to speckle through and the hairline hasn't receded at all - he has great hair, I should be so lucky when I'm at his age.
I continue with my cleaning regime of getting the house cleaned for my dad's arrival so he doesn't feel like he is walking into a nuclear waste dumping ground. I've washed and replaced the bed sheets on my bed as per instructions from the Pre-admission nurse and mowed the last bit of lawn, praying to the gardening gods that the mower would not run out of fuel. I've changed the cat litter, so that's all fresh, tidy.
And now that I've cleansed the house with incense sticks, I have nothing to do but wait until dad arrives so we can continue with the next part of our day.
Perhaps it is time for me to pack my suitcase in the interim.
After my dad has arrived, there is lunch, going through what needs to be done and then home to sit and wait for the day to be finished. Dad draws first blood with his granddaughter in the battle of wits of Grandfather versus Granddaughter.
Battle one:
Last night , Arwyn left her Elmo toy out on the dinner table waiting for J.J or I to change its batteries. By the time dad arrives today, the batteries are still unchanged in which my dad asks me if I was going to change it. I make some remark saying it's not high on my list at the moment and my dad says loud enough for Arwyn to hear that " Your mother doesn't care." What Arwyn heard " Your mother doesn't care about you." Ten seconds later, Arwyn is bursting into tears declaring that she doesn't like what Poppy has just said. Poppy rolls his eyes, hands up in surprise... Any attempts on my part to explain to him the reason why she's upset isn't going to help as he wouldn't understand and any attempts to explain to her that Poppy is only joking also isn't going to help for the exact same reason.
*sigh*
Winner: Poppy.
I'm not really worried about tomorrow morning... about how they are going to slice into my face.....I'm more worried about how Poppy and Arwyn are going to be together...whether Arwyn will actually get to school...whether Arwyn will walk all over Poppy and how J.J will go amongst all this. I'm more worried about the days just after I arrive home from hospital when the carnage will begin and I wont be able to rest because the three of them can not function without me. Not being the Sun here in which I think all revolve around me - it is just the role I have assumed, it is my job, it is my life that I take care of everything...and I just don't know how everyone will go without me being there to organise.
See you on the flip side peeps, I have a 4:30am wake-up call.
MONDAY, DAY OF THE SURGERY:
I'm sooooo nervous - but I can't say anything to anyone. My heart is beating a mile a minute and all I can think of is if something goes wrong, Arwyn will be an orphan. Yes J.J is alive but for how long? He has an appointment today at the clinic and I know the cancer has spread. And now I'm stripping down into a hospital gown. Shit! It's getting closer. I'm okay, I'm okay. I've been asked my name so many times - when's my date of birth? What is the operation that I am having? Hospital policy, I completely understand....just please hurry up and put me out.
I was first on the list but thanks to the sleeping tablets I have fallen asleep; I've woken up and have been informed it is time to do my surgery....I became second on the list and it is now an hour past my scheduled time. The doctors stand around me making jokes and the fucker to my left stabs my wrist with a needle while another one asks me my weight. I tell him and he says, no way you can't weigh that, you look much skinnier - I tell him I love him and then BLACK!!
AWAKE!!!
OH MY GOD I'M AWAKE....WOOHOO FOR ME - I'M ALIVE. I can't speak....my eyes are blurry and there is something on my face, get this thing off my face....get it off, get it off, get it off. Phew.....you heard me mentally asking you to take this off my face, now go and get me a cheeseburger - GO!
Damn it, she's putting a white patch over my nostrils, these are really long stitches hanging from my nose, noooooooooo not the mask again - Pain button?? I have a pain button let me just press that now.....sleeeeeeeeep.
23/2/12: - Morphine fucks you up. Tablet form, not so much, just a slight chillin to help you relax of a night time to aid in sleep.....I.V form - IT FUCKS YOU UP. Every time I closed my eyes I was in an instant nightmare. I stopped the self-medicating morphine drip as soon as I became "aware". The two long stitches I thought I had were actually tampon style nose plugs stuck up my nose - not attractive, nor comfortable. Apparently they had taken so much bone away from my right nasal cavity that the blood was freely spilling. I am told that they actually managed to clear a window in there so I should be able to breathe through both nostrils (woohoo). 1.5cm thickness of bone was cleared away from my cheek bone and they took another mass of bone from the roof of my mouth. As such my speech is worse because of the swelling, but it will be interesting to see how my speech goes once I am healed.
I feel so out of it.....and Arwyn is looking at me differently. I don't like that. She looks at me like she knows she knows it is me yet she questions it at the same time showing her doubt.
Anyway....I doubt I will be able to write much more as all I want to do is lie down. So here is a photo diary for the first couple of days. And I may update this blog post with more as I heal.
 |
| Two hours out of surgery |
 |
| The nose tampon strings I thought were stitches. |
 |
| Looking almost normal Tuesday night around 7pm. |
 |
| Tuesday morning, after nose padding removed. |
 |
| 2am- Wednesday morning, the swelling begins in earnest |
I hate feeling like this. Hate it, hate it, hate it. And I really want to blow my nose, but I'm not allowed to. This sucks! SUCKS, SUCKS, SUCKS!!
Okay *sigh* Moan done. going to go to sleep.
Follow up appointments on Friday and Wednesday, will be able to get much more from the doctors since I will be coherent.
What is written below was to be a separate post to accompany the week that was... of Lily's surgery - that being said J.J and I lost days, apathy seems to have taken hold... so this is a draft of what was written at the time. It hasn't been edited and J.J didn't add much during the week but here it is...
Follow up appointments on Friday and Wednesday, will be able to get much more from the doctors since I will be coherent.
What is written below was to be a separate post to accompany the week that was... of Lily's surgery - that being said J.J and I lost days, apathy seems to have taken hold... so this is a draft of what was written at the time. It hasn't been edited and J.J didn't add much during the week but here it is...
MONDAY:
J.J.: It's going to be a long day. I already knew that, just wasn't aware of how long it was going to be. We start off by dropping Arwyn off at Hero Corrina's who will take her to before school care for us. Then it's off to the PAH for Liv's check-in and my 'routine' oncology check-up. Well, I can already feel from what my body is doing that it isn't going to be routine.
My stress levels build. I'm anxious, twitchy, alert, but distracted all the same. I imagine this is what it felt like to be in a fox-hole waiting for the action to start.
We get Liv checked in and I wander off for the routine bloodtest. By the time I get back, Ted is there - Liv has been checked in and now its just waiting time for her surgery my appointment.
Time for breakfast.
We finally get in to see the Doctor - he's actually the head of the entire oncology/heamotology dept. He gets things done, has a bedside manner and remembers the details of your case. In a clinic that is this busy anyone of those characteristics is enough. I like him.
He greets me with a how are you? And follows it up with a "you never complain."
"Well, today I'm going to."
"Oh?"
I proceed to explain the new symptoms. The pain down the legs, across the back, the trouble with pissing.
Within 10 minutes I'ven been booked in for an MRI - normally a month long waiting list.
Down in radiology we find that its going to be a few hours before the MRI - I send Ted home, and tell him that he can pick me up after Arwyn from school. Lots of driving, but what can be done? Ideally, everything would have been done long before - but it just isn't going to be easy is it?
2pm - MRI done and now back at the oncology clinic waiting for the docs to come back and tell me what has gone wrong now. My thoughts are racing back and forth between the cancer and wanting to check in on Liv. I want to know that she is ok. I want to be in the room holding her hand as she wakes up. I want to be able to look after her the way she looks after me.
I ring Ted and let him know what's going on. I tell him to just come in and wait after he picks up Arwyn.
Damnit!
I dont think of it until 3:10 - the plans we made for Arwyn's hair to be done!
AAARRGGGHHH.
I don't have the phone number.
I finally get back in to the docs - its a registrar this time. She tells me where it has spread too, gives me a bunch of pain relief. The other Doctor had already made arrangements for emergency radiation treatment. They want me back on friday for more discussions.
Ok- it is a case of hurry up and wait, but it is happening very fast.
That doesn't actually bode well.
Around 4pm we are finished and head up off to Liv's room. The surgeons are with her, she's been worried about me. She looks great. Tired. Sore. But she is the beautiful bride I married nearly 10 years ago.
I'd do anything for her.
She's worried about me. She knows its spread, I tell her what I know.
It's time for home, dinner, bedtime rituals for Arwyn.
I'm fucking exhausted, I'm in pain, I'm stressed.
Time for sleep.
Lily: Being sliced and diced - BLACK OUT - Fuzzy.....SLEEP! Nasty morphine based dreams.....need to be "aware".
TUESDAY:
- J.J.: Ted and I get the little princess off to school, with the help of Corrina coming in to do her hair for us. The rest of the day is spent running around doing little errands. A bit of retail therapy.
Lunch. A phone call or two to Liv - she sounds great.
I fall asleep on the lounge.
Lily: A little it more with it...spent the day watching seasons of " How I met your mother".
WEDNESDAY:
J.J: I wake up in a panic.
It's 8! Oh god, please let her be ready for school.
*Relief* The house is empty - Ted has taken the little one to school.
I make some breakfast, shower, ring Liv - she gets to come home today! We leave straight off to go and get her and get me in for radiation. I'm trying to figure out a map and schedule.
Thank god, Liv is waiting in the foyer. Wow, she really wants to be gone and home. After all the time I've spent at the PAH over the last year I can't blame her. I get dropped of at the Mater - lots of chatting with staff over me being back so soon. They tell me how long a day it will be.
The first planning part last about an hour - nothing to do now for the next three hours.
I head off to the sushi train.
Yum.
I go back inside and the nurses give me a bed in a dark alcove to have a nap.
Lunch and a nap.
Awesome!
I have a quick chat with the radiologist - side effects, how long etc.
Treatment - lay on table, don't move, all done.
Get picked up.
Home.
Home where we all are.
I dont want her to do anything, I love having her back.
Just getting to sit around the lounge with her is enough.
Lily: I'm home.
THURSDAY:
Lily: I honestly have no recollection of today.
FRIDAY:
Lily: Seriously, my face hurts.
SATURDAY:
Lily: The weight of the world is pressing down upon my shoulders. I have reality firmly shoved into every orifice and I'm panicking. The second guessing being done on decisions I am making on behalf of Arwyn and myself for when J.J dies is sending me around the twist. I need support. I need someone to take care of me. My face feels like it has been ripped off and stitched back on - today is not the day to place doubts upon me. What do I do? Where do I go? Why are you bringing this up now?
I am crying so much and it is forcing my face to pull apart from the stitching. Oh my god there is so much pain. Pain, Pain... PAIN!
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