It has been weeks, if not months since my last post. I’ll be honest, I haven’t wanted to share. I have needed to sit back and take stock of everything that has happened to our family. I have needed to organise my thoughts, emotions and memories of a truly traumatic time. In the same way that I have found writing a very cathartic experience, in the last few months I have found it almost unbearable to think about putting what has gone on into words. As Christmas approaches and I sit in a bed next to Eleri in the Children’s Unit of the Great Western Hospital, I feel reflective and pensive about the whole experience of childhood cancer. At the same time I am feeling hesitant about the future and view it with a reasonable amount of trepidation.
The future looks positive; the best it has looked since diagnosis. The tumours in Eleri’s lungs shrank enough for her to undergo surgery. The surgeon was able to remove three lumps with good margins. Even better than that, the necrotic tissue they removed showed no live osteosarcoma cells. Seemingly, second line chemotherapy has worked. Eleri has had her last round of chemotherapy and we should be out from this episode of febrile neutropenia before Christmas. All so unbelievably positive and, quite frankly, somewhat surreal. Only five months ago we were told that is was ‘very unlikely that Eleri would be cured.’ This is not be me being over dramatic, it is a direct quote from a letter we were sent by her consultant. It is this one line that is keeping me from drinking champagne from our Clic Sargent coffee mugs and offering up a one finger salute to cancer. The bloody disease could come back. The nasty, sneaky minute little beasts could be hiding and/or mutating into something else; something that won’t or can’t be treated. We have had the stark realisation that we will never shake off the fear. There will never be true relief. It will always be hanging around in the dark corners of our minds.
As depressing as this may sound, we are very very happy to be looking forward to a stress free Christmas with no hospitals, no scans and no results to dread. I can’t wait for Christmas. I have been ready to celebrate since the middle of November. The tree was up on December 1st and, for the first time since we have had children, it’s a real one. Another reason we are excited is that we are facing the new year with hope and optimism. Everyone will get a fresh start. Owen will continue at pre-school, Rob goes back to work and Eleri goes back to school. I will get time on my own to decide what I want to do. My life, our lives have changed. Yes, we are going back to the ‘normal’ routine, but everything feels so different. It feels like the beginning of a new era for us; one where anything is possible. The good thing about watching your child struggle with childhood cancer is you realise that you have had just about the worst life can throw at you. Worries about money, career, what people think of you, social expectations that you may have tried to live up to or even the assumptions about the path your life would take are irrelevant. It doesn’t matter what people think or what you are expected to do. The release from these worries means we can sing and dance to our own tune. It doesn’t matter if Rob ends up being medically discharged from the RAF, we will figure it out. Our lives won’t end if I don’t go back to teaching. In fact, here’s a thought, they might even become better!
We are all facing the new year as new people. Owen is growing into a cheeky, happy and thoughtful little boy. He is going to school next September and will officially become a ‘big boy’ (I’m largely ignoring the whole situation as I can’t quite get a grip on where my little baby had gone). Rob will return to work with a diagnosis of epilepsy, a thirst to prove himself and doubts as to whether he is ‘good’ enough. In my humble opinion, even with epilepsy and the risks that could pose, he is still twice the airman than some of the people he has come across in his career. In this modern age with the drugs he is taking these risks, again in my very unscientific opinion, are minimal. If they decide he has to go, then it’s their loss not ours. We will move on and make our lives better.
Eleri, who faces the biggest challenges of all, will have to find a new way to live. She will have to find a new way to exist in a life where she is unable to do many of the things she so loved before. She has to re-assimilate into a class of peers that have been growing and learning without her. She has to return to a world where children are children and none of them face the hardships that she has and will have to endure. She has grown up. She has become a different form of herself. Will people accept this new form of self? Will they understand the horrors she has endured? Will her friends still play with her even though she can’t run, jump, skip or hop? Will they make allowances for her and make subtle changes to help her fit back in? Will she be treated as a ‘normal’ child and not as ‘the little girl that had cancer’? She doesn’t want to be different. She doesn’t want to be wrapped up in cotton wool. She wants to move on with her life. Will she be able to? I hope so, but only time will tell.
There have already been little changes that she has noticed. She hasn’t been to any birthday parties this year (I mean she probably couldn’t have gone anyway, but she doesn’t understand this), she wasn’t invited to any of her school’s Christmas activities, she hasn’t received any Christmas cards. She doesn’t see how supportive all of her friends and their families have been over the last year. She doesn’t see that she probably couldn’t have gone to any of the Christmas activities at school.
We recently went to our annual ‘Friends Christmas’. It was difficult for Eleri. She is going to have to come to terms with not being able to move like her friends. The children she has grown up with still love her and want to play with her but, quite simply, they move too quickly. She can’t keep up. These are our ‘slap in the face’ moments. The moment when you realise that everything and nothing is changed. All our friends are the same. All Eleri’s friends are the same. Outward we are the same, but there has been an almost unnoticeable shift in our reality. The fun weekend that we were all so excited to be going on was, at times, like a slap in the face. Everyone else is living their life as they were before but we are ever so slightly changed. When you are an eight year old whose life has morphed into something unrecognisable, you only see the little things. You only see what is important in your small and previously perfect world. Helping her to understand that her new world is just as perfect and it can be whatever she wants it to be will be a hard and sometimes emotional journey.
As for me, I have absolutely no idea what my life is going to be moving forward. I know I don’t want to go back into education. I know I don’t want a 9-5 soul destroying career. There are opportunities out there that I have never considered because I allowed myself to be pigeoned holed into run of the mill respectable career. I don’t really want run of the mill anymore. I want a life filled with purpose and meaning. I want to give back. I want to have a positive impact on the world. I want to help make people’s lives a little bit better. I leave this experience with fully fledged anxiety. I have whole days where I can’t breath. I can’t ever seem to catch my breath. I don’t outwardly look like I’m struggling, but my body is telling me something very different. I need to slow down and re-centre myself. I need to go back to yoga. I need to take stock of all the good things we have. I need to remember that the worst didn’t happen instead of thinking that is hasn’t happened yet.
This is the enormity of the impact childhood cancer has on lives. It doesn’t just end. It never ends. We are forever changed. I have spoken to other parents who have finished treatment and they feel the same. They have the same sense of reluctance to step away from the hospital and the safety of the nurses and doctors. They have the same feeling of slight panic when the doctors say, we will see you in a few weeks. One parent said that when they got diagnosis they felt like they were standing in the edge of a cliff. Being in the cocoon of an oncology ward pulls you back from that cliff. It helps you find your balance. They pick you up, dust you off and say ‘come on let’s get your child better’. More than that, they give you hope. Being told that you no longer need them is like standing on the edge of another cliff; one where no one is there to help guide you away or catch you if you jump. There are absolutely no certainties in life anymore. We are just going to have to hold hands and jump off together. Eleri’s cancer may come back, but we will make dam sure that we fill the time in-between with love laughter and, most of all, life.
Merry Christmas and a happy new year to everyone that has given us a virtual hug this year. The support and love has been unrelenting and has bolstered us at times when we needed it the most. We don’t know what will happen in 2019 but we can’t wait to draw a line under 2018. Thank you all and I’ll write you in the new year.