Recently, we were joined in the Care.com offices by our new colleague Louise. Like any 22 year old she is fun, sparky and a fashion conscious addition to the office. She is also a survivor of childhood cancer. Here, she speaks about what it is like to receive care as a child – and her take on what must have been a challenging time for her mum.
When I was three years old I was very much like I am now: outgoing, excitable and a bit mischievous. It was around this age that I was diagnosed with Leukaemia. As soon as I got the diagnosis there were changes: I was tired, sore and just not my usual vivacious little self. Yet despite the hospital visits and chemotherapy, the memories I have of surviving childhood cancer are: the itchy hats that Mum made me wear to keep my chemotherapy-bald head warm, the nurses telling me ‘put some slippers on!’ and the, quite frankly, awesome Wendy-house in the childrens ward garden.
Now, over twenty years on, I feel like the most normal 22 year-old possible. I was in remission for ten years with regular check-ups, and around my sixteenth birthday I was given the absolute all-clear, free to go! Of course the hospital appointments had become sparser over time, and I was only going once a year by this point. Yet hearing that I wouldn’t have to attend the regular appointments – ever – again was liberating.
Unfortunately, a month later I was diagnosed with a Parotid Gland Neoplasm: a little lump by my ear that was cancerous. Luckily, I was only required to have two operations and I was given the all-clear: a very different experience to my three years of treatment for Leukaemia. However, my family’s lifestyle and mine did change again – with Mum taking time off work to make sure I was fighting fit after the operations and me having time off school until I felt 100% again. Even though I was much older at this point, I still needed the care of those around me. My grandmother came and stayed with me for a couple of weeks, to make sure I had plenty of cups of tea whilst Mum was at work. We considered ourselves lucky that we had family nearby to help out when we needed it most.
The other day I had the chance to meet a lady at the bloggers event BritMums, who writes the blog ‘Our Life with Leukaemia’. Until I met Karen, I hadn’t thought about my own life with Leukaemia for a long time. Yet meeting a parent of a child diagnosed with the same type of Leukaemia as me (ALL), and at the same age, was unexpectedly emotional. ALL (Acute Lymphoblastic Leukaemia) is one of the most common, and most curable, types of Leukaemia – yet I know it was still an extremely difficult time for us all. I went through an initial period of intensive chemotherapy that knocked me for six, I had regular lumbar-punctures (where they sample a small amount of fluid from the spine) and a two-year period of less intensive chemotherapy.
Talking to Karen made me think of my parents, my big brother, my grandparents and family friends, and everything that they did to support me and get me better. I was, and still am, the luckiest girl to have the most fantastic support network around me. Talking to my Mum, she considered herself fortunate that she had the opportunity to stay off work for the three years of my treatment, but she knows this was a huge privilege. Mum recollected how one family on the hospital ward had to juggle the care of their daughter between the Mum’s working hours as a nurse and the Dad’s shift work.
The care demands of looking after someone who is poorly are huge, and when it’s your little one who needs your protection, attention and time regardless of illness, it can seem even more of a challenge. I started to think of the more difficult times during my treatment, the times which I don’t often think about – because, ever the optimist I always try to find a rose-tinted outlook! I thought about the isolation units, when only my Mum could be with me and when I woke up from lumbar-punctures seeing six of everything. But even then, my Mum and I giggled about that the other day, as she looked at me and said “you were like a cute, blonde, curly-haired drunk saying there were twelve of Mummy’s eyes!” It’s this joking, this laughter, this continual support that makes me feel like I could get through anything, with those I love to support me.