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.
