My time in hospital was intolerable. This sounds so bad but sometimes I just wanted to hurry up and die so you could all get on with your lives. I felt like such a burden, which made me feel horrible. You couldn’t grieve properly until I had died but the longer I held on for, the more excruciating the pain became for Mum and Dad. It was awful to watch Mum’s eyes well up every time she came in the room. It was harder to watch a grown man, our Dad, break every time he saw me. When all of our family came to visit, I saw the hopelessness look on their faces just before they assumed the bright , sunny, cheerful smile that everyone assumes when they talk to an ill person. It felt so fake and at times I wished they wouldn’t come at all. I tried to assure them that I wasn’t afraid of dying, that I had accepted it and was ready. They all nodded their heads knowingly, but I knew they were thinking inside that I was only trying to make it easier on them, but I want you to know, I wasn’t afraid. The long lonely nights where I had nothing to do except contemplate my impending fate had taught me that.
I used to love your visits. You were the only person who treated me like I was still alive inside. You made me feel happy and made me want to get up and play. We used to play card games like Go Fish and every week you used to bring me a picture that you had drawn for me at school. My whole room was covered in pictures of me and you playing football together, watching television. Whenever I was sad I used to look at those pictures and lose myself in them. Pretend that none of this was happening, but it was. I don’t think you understood exactly what was happening to me.
You used to ask, ‘When’s Emma coming home?’ Everybody used to ignore these questions except me.
I replied, ’It depends on the doctor and what he says.’
Then you said, ’Can I talk to the doctors and ask them if you can come home? I want you back home. I want things back to the way they used to be!!’ And with that you flung yourself in my arms and clung on. This made my heart break. I didn’t like what I was doing to you. You were only 4, too young to understand the complexities of my illness. To you I was still Emma and you thought it was wrong that I wasn’t at home with you. I hated seeing you upset, but my appearance never bothered you. I was becoming skeletal, grey and frail but you always treated me the same. You were the only one.
I managed to hang on until at least your 5th birthday. Unbeknown to Mum I had paid one of the nurses to go and buy you a play station game . Your face when you opened it next to me on the bed was unforgettable . Never mind the fact that I’m nearing the end, you jumped on the bed and gave me a massive kiss. You made me feel needed and loved. That memory was the one I thought of most often in the end.
You and I always got on so well. We used to have a bond, an understanding. I used to call you Markie even though your name is Mark and you used to call me Emmy, right up to the very end. We used to call Michael, our brother, ‘smelly Michael’ and if he used to get angry at you then I used to stick up for you and protect you. I think he was jealous of us. Well I’m not going to be there to protect you any more. Even though it’s the one thing I want most in the entire world. I would swap everything just to be there for you, but I’m not. I always want you to be the person you are today - vivacious, full of beans, happy, but most of all keep that ability you have to lift everyone around you up. Trust me, I'll know if you change. I’ll always be watching over you no matter what. Every time you get an award or something good happens I'll be there by your side. I never want you to feel alone because I’ll always be there.
Near the end, my life was empty. I don’t want that for you. I want you to live for the moment, to never miss an opportunity, I want you to always do what you want to do, no matter what anybody says - you never know what’s going to happen. Look at me - in the morning I was a normal teenager, by the afternoon I was a terminally ill cancer patient. I never got to do what I wanted to do - go scuba diving, visit the Caribbean, get married but I don’t want you dying with the same regrets.
I’ll always love you and I’m still your sister even if I am dead and there’s nothing you can do to change that. I don’t want you wishing your life wishing I was still alive. Just be you. Trust me, I'll know if you’re not Live life to the full and with no regrets. Remember I’ll always be there for you Markie, no matter what.
All my love always
xxxxx