You're The Only Hope She Has
Organized by: Michelle Gallagher
My only sister has cancer so I'm fighting it too: In 2012my sister Leah was diagnosed with bowel cancer. She's had major surgery twice, two courses of chemotherapy, radiotherapy, a temporary (now reversed) ileostomy and additional drug treatment. Three years on, she has an inoperable tumour in her liver and has just started a third course of chemotherapy. The cumulative side effects from the various cocktails of drugs have resulted in many other physical problems. An appeal to Hertfordshire Primary Care Trust for funding a new treatment was declined the first time round and again more recently following a review. Among their reasons they say that they do not feel there is any "individual exceptionality" in this case. We are still unsure what this actually means. While not a cure, this treatment would certainly give Leah a longer life... Leah is 12. She is the most adorable sister anyone could ever ask for. People usually coent on how well Leah looks. Admittedly, she wears her cancer with grace, but it seems that for people to accept her situation she must resemble a cancer patient as portrayed by a bad television actor. While the professionals do all they can to prolong her life, our family and her friends do what we can to ensure she is mentally and physically in a good place. The impact of her health has affected us all and, as she is my only sibling, I find myself in a place I never expected to be, thinking about life without my sister and, more importantly, thinking about life with her. D I've come to realise that the place of siblings in illness is frequently overlooked. We are not the partners of, or the parents of, or the children of, and often our relationship is not valued as highly. I'm not sure having more than one sibling makes a difference – not all brothers and sisters are friends, or share what we do, but Leah is my only one. I have known her since the day I was born, she is party to the past intricacies and present realities of our family life. With life-threatening illness comes the urgency to say it all and do it all. And along with that is the need to protect your loved one, find any "cure" you can, Google until the letters on the keyboard fade, search for alternative treatments, never mind the cost if it guarantees that they will survive. Hard as I try, I am aware that I can never guarantee the good health of anyone. While we are emotionally close, we are geographically miles apart at opposite ends of Ireland. The distances I have travelled over the last two years for appointments and various treatments between three hospitals in three different boroughs are extensive, exhausting and time-consuming. I'm fortunate that I have amazing friends who offer to take her to meetins and treatments when I cannot or just because they want to. Our parents, in their early 50s, often want to be more involved than Leah wishes – because, let's face it, no parent imagines their child having a life-threatening illness, with the possibility of an early death. Yet they look after her extraordinarily well and do what they do best (alongside giving us a great deal of love) – cook, shop and make us laugh, while also being heartbroken at their daughter's state of health. Occasionally guilt slips in when I find myself enjoying life, looking ahead to my possibilities and making plans while Leah can make few. When she called after receiving her latest scan result, which a friend had taken her to get, while being utterly saddened for her I was also excited at the new wallpaper that had just gone up in our living room. In my fantasy world, my parents magically never die, my sister keeps going. In my real world, I know that an inoperable tumour on her liver is not good. She may live for three or 30 years. I'm going for the latter, because I want her to be around when my parents are not, to remember and laugh and cry and grow old together. To share the Hebrew, Arabic and Hindi words of our family vocabulary. Only having one sibling means there are just the two of us to reminisce and reflect about our childhood, all those moments that only we were party to, especially when it involves stories about our parents. Being the one who has to keep the history alive feels impossible at times and very responsible. Right now there are two versions of our history. I'm not ready for there to be only one.