Tomorrow is our theatre day. Our very last theatre day on treatment. There will only be 1 more theatre day in 6 months' time when they remove her port, but for now, this will be the last one. So tonight I told Bianca that she would not be going to school tomorrow as she will have theatre day and she said:
Bianca: I like going to theatre
Lea: Oh really?
Bianca: Do you know why I like it?
Lea: Why?
Bianca: Because of the sleepy medicine they give you. It makes my head all dizzy. I like that.
Lea: Well this will be the last one until they take your port out in 6 months' time and then no more.
Bianca: Aaaahhh. I want to go on Tuesday again.
Bianca seems quite disappointed that there will be no more theatre days ahead. I can't say I blame her, this is all she knows. This is her comfort zone. She knows what to expect and I guess she must feel in control in this "world". This is her life, and she probably can't imagine her life without it. She definitely can't remember life before this, because when I recently asked her if she remembers not having a port, she just stared at me blankly. As far as she's concerned, she's always had a port.
Whilst this may seem really sad, the truth is that it is actually a blessing that she remembers little of a life before being sick. It means that she has never mourned the previous life she had. She never regrets the life she has now. She lives her life, knowing that it is hers and that it is meant to be lived and quite honestly it would simply have been so incredibly sad if she wasted it wishing it was how it was before she became sick and wishing her life away. She really was at the perfect age when she was diagnosed, old enough to understand what we needed her to do, but young enough to not ask "why me?", "what if?", and not to regret every minute of her life. To be able to live life regardless of the challenges - that is a real blessing!
Bianca: I like going to theatre
Lea: Oh really?
Bianca: Do you know why I like it?
Lea: Why?
Bianca: Because of the sleepy medicine they give you. It makes my head all dizzy. I like that.
Lea: Well this will be the last one until they take your port out in 6 months' time and then no more.
Bianca: Aaaahhh. I want to go on Tuesday again.
Bianca seems quite disappointed that there will be no more theatre days ahead. I can't say I blame her, this is all she knows. This is her comfort zone. She knows what to expect and I guess she must feel in control in this "world". This is her life, and she probably can't imagine her life without it. She definitely can't remember life before this, because when I recently asked her if she remembers not having a port, she just stared at me blankly. As far as she's concerned, she's always had a port.
Whilst this may seem really sad, the truth is that it is actually a blessing that she remembers little of a life before being sick. It means that she has never mourned the previous life she had. She never regrets the life she has now. She lives her life, knowing that it is hers and that it is meant to be lived and quite honestly it would simply have been so incredibly sad if she wasted it wishing it was how it was before she became sick and wishing her life away. She really was at the perfect age when she was diagnosed, old enough to understand what we needed her to do, but young enough to not ask "why me?", "what if?", and not to regret every minute of her life. To be able to live life regardless of the challenges - that is a real blessing!
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3 comments:
Bianca, and all of you, truly are amazing!
I live in the USA so forgive me for not knowing , but what does theatre mean? I've heard that it means having a surgery, but what are they actually doing in the surgery. Thanks for your help
Bianca goes to operating theatre and gets a lumbar puncture where they insert chemo into the spine with a needle whilst she is under general anaestetic. At the start of her treatment she got it once a week like this, but since on maintenance it was once every 3 months.
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