What it's like growing up with a terminally ill parent
My dad was 53-years-old when I was born. A dapper man with bright blue eyes and a generous personality, he never failed to make people laugh, delivering anecdotes with charm and energy. He was a father of whom I was most proud, and an important friend.
When I was 17 months old, he suffered a cardiac arrest. We had just got back from a long walk in the uncomfortable heat of Guyana - Dad was a diplomat, serving as British High Commissioner there. He had just removed me from his shoulders when it happened, suddenly and unpredictably. He couldn't move for the chronic pain in his chest. Needless to say, I don't remember any of it.
His service was cut short and my mum, dad and I made our way back to the UK for urgent medical support. From that day onwards our lives changed; we knew that, over time, his heart condition would worsen.
He retired a few years later. So, while Mum worked until the evenings, he was the one who waited for me at the school gates, drove me to my dance lessons, watched my sports matches and helped me with my homework (a task that required great patience, particularly when it came to maths). After school, we would go to the cinema or swimming, occasionally followed by some shopping and ice cream.
People would often assume he was my grandfather. We were both aware of how old he looked compared with my friends' fathers, but it never affected our relationship, and I felt lucky to be able to spend so much time with him. But even then, I always knew that something could happen, that his health had the potential to change drastically, that I could find myself in a situation where I had to take control.
I knew all the emergency contact numbers off by heart. I became obsessed with health and cleanliness. I would even monitor his pill-taking habits - how many he was taking, which ones and at what time. Not many primary schoolchildren know the side effects of warfarin tablets, nor warn their fathers not to drink cranberry or grapefruit juice as it could interfere with their medication. Despite being cautious, and undoubtedly annoying at times, I was never scared.
I was eight when Dad went into St Thomas' Hospital to have triple bypass heart surgery. At the time, I had no idea what that meant. In my diary, I wrote: "Daddy's in hospital to get his heart fixed", a simple description that I treasure now. Surgery lasted just over four hours. I remember my mum and I going to Marks & Spencer to buy him some silk pyjamas and soft slippers to make sure he was comfortable during his stay.
I was only allowed to see him at certain hours. The doctors felt it was best if I didn't go into his ward, in case I found it distressing. Instead, I stood with my aunt, nervously clutching her hand, waiting for my mum and dad to shuffle their way out into the corridor to see me. My dad, struggling to -balance, stood proudly in his new pyjamas and slippers and gave me a big smile and a low wave. He hated that I had to see him like this, and I hated seeing it too. I waved back and smiled sweetly, though wanting to go home and cry.
That was when I started to see him as a patient; someone who needed to be cared for rather than needing him to care for me.
A few weeks later, Dad and I went food shopping. He had been warned that lifting heavy objects might put too much strain on his heart, so I was determined to help in any way that I could, including attempting to carry all the food in one big Ikea bag, which was practically the same size as me (and weighed a ton).
Pushing away his offers of assistance, my fingers raw and my back hunched, I dragged the heavy bag behind me across the car park until the weight suddenly lifted. I turned around - my dad had managed to get hold of one of the handles and, both as stubborn as each other, we walked slowly towards our car clasping one handle each. From that moment, he referred to me as his "trusty assistant".
As the years passed the little things gradually became more difficult, and my dad found himself increasingly frustrated by his limitations. I remember coming home from boarding school, a few weeks at a time, and -seeing a noticeable deterioration in his health.
On one of those weekends, I -recall rubbing ice cubes on his swollen legs and ankles to reduce some of the pain and inflammation caused by a build-up of fluid, a condition known as oedema. I don't know whether I was doing the right thing, or whether it was particularly helpful, but my -instinct was to look after him, and cling to every second we had left. Our time together became more and more precious.
My dad passed away peacefully at home. I was 17 years old when it came - a strange bookend considering I was 17 months old when his condition announced itself, as if it was all somehow planned. Even though his death was always expected after that first heart attack, his health as fragile as a ticking bomb, nothing prepared me for the aftermath - the feeling of sheer emptiness; the waves of emotion that come and go as quickly as blinking; the pain of having to carry on when it doesn't feel worth it.
For a while, it felt as though my own life had stopped.
I miss calling someone "Dad". I resent the fact that that word will now forever be associated with grief as well as love, and I would do anything to have him back in my life, but I wouldn't change anything about my childhood, or the lessons that his terminal illness taught me.
There are still days that seem unbearable, of course, and certain painful memories will stay with me forever (I now have an irrational fear of hospitals), but I hold on to every positive memory of my dad, every story he told, every funny comment he made, all the things that made him happy, because I know that's how he wanted to be remembered.
Our shared experience has given me a realistic view of the world; where nothing lasts forever and where one has to make the most of every moment. Dad taught me to have faith in myself, to seize every opportunity I'm given and to stand tall when times are tough.
Growing up with a terminally ill parent has made me a more patient, loving and grateful person, who takes life as it comes but lives it to the fullest; who rises from lows with optimism and sees the world with the same bright blue eyes as my dad once did.