The few weeks between my biopsy and the start of my treatment are a bit of a blur. I constantly felt tired and spent the majority of the time with my eyes closed. I was lying down all the time, either in my own bed or the bed in my Mum’s room where I was sleeping. I was unable to get up by myself as I still couldn’t walk. My speech was still bad too, I was speaking very slowly and found some words hard to say. It almost felt as if I had been born again, I was a baby who needed to learn how to walk and how to speak, and I was so determined that I would.
Not being able to walk was the worst thing for me. It meant that I had to rely on my Mum all the time, calling her over every time I needed something or I needed a trip to the little girls room. I spent most of these days watching DVDs on my TV in my room, I was constantly lying on my left side to calm down the pain that I had in my left shoulder. Even with the help of drugs strong as morphine the pain was unbearable unless I laid on my left shoulder. So watching DVDs was all I could do really. The problem was every time the DVD finished I needed a new one to be put in to the player. I couldn’t get up to even walk the few metres across the room to do so and had to rely on either my Mum or my little brother Tom to come and do it for me.
My Grandpa had found this little device which helped in these kind of situations. As I was always upstairs and my Mum was, well she could be anywhere in the house! It was hard sometimes for Mum to hear me whenever I needed her. My Grandpa had found this device, a little button for me to have by my side, which when I pressed it, played a tune on the other half which my Mum religiously carried around with her. The tune my Mum chose to have was Disney’s ‘It’s a small world’ and now when she hears that tune I’m sure she shudders slightly remembering the countless amount of times she heard it when I was ill!! I was aware at the time of course that that sound would be annoying to Mum. Bless her she was great, looking after me 24/7, and I tired my best not to overwork her, as well as looking after me she was looking after Tom and my Dad, who well has never cooked a meal or done a load of washing ever in his life, and he wasn’t going to start now. I’m so grateful for my Mum, one for staying so strong and two for managing to cope with everyday life as well as looking after me. She was brilliant.
There was a point within these few weeks when a Nurse arrived at our house to check on how I was doing and also to remove the staples that where in my head that were holding together my skin from where they had gone in for my biopsy. The nurse’s name was Gabby and I remember our first meeting vividly. My experience with nurses so far wasn’t great, especially the ones at St. Georges who wouldn’t let me get up to go to the loo when I woke up from my biopsy. But Gabby was a different breed. I instantly loved her, she had a great sense of humour and I lightened up as soon as she came in to my room. She was really gentle with me whilst taking out the staples, making jokes along the way to keep me smiling and well was a great credit to what she does. Still to this day, she is the best nurse that has dealt with me and I have never forgotten her!!
My immune system had dropped down to a very low point, meaning that a lot of people who wanted to come and visit me couldn’t. If someone had a cold or a member of their family had a cold (i.e they could be carrying the virus) they were banned from seeing me as if I had caught zed cold, it would have effected me really badly. My Mum had to stay away from people possibly carrying a cold virus too, as she was my carer, if she got the virus then I would have too.
So those few weeks went by and they were horrible. I was confined to the upstairs of our house, going downstairs wasn’t an option at this point considering I was so wobbly on my feet. I felt absolutely useless, I couldn’t even stand on my own two feet. This is what frustrated me the most, mainly because I used to be such a sporty girl, joining in with whatever sports club I could and now I couldn’t even walk 1 metre by myself. It felt really lonely. I tired to stay in contact with my friends via text but I found this hard to do. What used to be a quick way to message had suddenly become a massive task. Finding it hard to keep my eyes open was the biggest barrier and even writing out a short text message was tiring enough for me. I found it really frustrating that doing something as simple as this was so hard. My Mum had got me a notepad to write things down if I needed to. Again this was hard to do, even though I’m right handed and my right side was fine, it was the energy I didn’t have to do it and I think there were a lot of pages of frustrated scribbles.
Finally though, the time came when I had to walk downstairs and venture outside…