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Something I needed to write.
I haven’t felt this way in so many years. The need to get words down, to write it on paper, to know this needs to be said. In the past it used to be a crazy idea, a stupid story, or maybe even some grand plan. But this time it is more. More emotional, more real, more important.
Sometimes you think these things couldn’t really happen, it can’t be real. These are just those kind of stories in books, movies, trashy magazines or on A Current Affair. But for my family this is what is happening to us, today.
Brain cancer kills. It kills so many Australians every year (numbers here). And right now I have a father in law and a niece suffering from it. Both sides of my family are suffering. It is hurting so many people close to me.
Cancer isn’t new to us, but this is different. Even brain cancer isn’t new. Amazingly my father has been through this before. He even won. At that time his chances to make it past the one year mark were 5%. It was another 16 years before this beast returned. Those figures are amazing. He was so lucky. We were so lucky.
There are so many things he got to be a part of over those years. His sons turning into men. Getting married. And the birth of 3 amazing grandsons. Damn cute little boys too. They love their Pop. And he loves those little boys. Unfortunately only one of them is really old enough to truly remember him. Unless, somehow the most unlikeliest of things happens. Unless, somehow he can beat the odds again. Right now that doesn’t seem likely to happen.
Cancer also isn’t new to my niece’s family. It was only 5 years before her diagnosis that my sister in law was faced with her own diagnosis. Breast cancer. I remember sitting in the hospital room with my new born son whilst having a visit from my brother and sister in law. The midwife came in to help me with feeding. Not surprisingly my big brother left the room. Pretty sure most big brothers don’t want to face their sister with a baby and boobs. Oh the boobs. Nothing changes in those post birth days like boobs when the milk came in.
My sister in law stayed, and it was nice. Particularly because this was not my kind of midwife. A bit more ‘open’ then was my style. But my sister in law sat through it all. Only a week later, when my brother rang, did I find out she had just been diagnosed with breast cancer. They came up to tell the rest of the family, but didn’t want to ruin our new baby buzz.
The difference then was the complete lack of doubt. Breast cancer is beatable. So many people win the fight. The odds are ‘ever in your favour’. And she won. I won’t say easily. I had a newborn, I wasn’t even close to the fight. I didn’t share in the challenges. And there was never any doubt.
By the way, my mother in law had already won this fight too. Like I said, cancer isn’t new to us. But I was only on the outside of that one. I was a friend, not yet girlfriend or wife. That isn’t my story.
When my father in laws second diagnosis came it wasn’t a surprise. Signs had started. We spent a really special post Christmas at the family cabin. It was small and cramped. It made for interesting times, and probably a little frustration and angst at times. But the family were together and all 3 grandchildren were at the cabin for the first time.
On return there were more signs. Then came the diagnosis, followed by surgery. But there was always hope. He did it last time. He beat the odds. He can do it again.
In the last 5 months things have progressed. And realisation for everyone is starting to sink in. There has been a trip back to the cabin, but not with the whole family this time. Thankfully my in laws have some fabulous friends who helped them through. Especially because we couldn’t be there.
My niece’s fight has been different. And it hurts to me say I haven’t been there enough for my brother and sister in law. I wish I had been better, and that will always stick with me. It is so much harder when it’s a child.
The day my brother rang and told me she was in the hospital sticks in my brain. Sitting at work and just assuming appendicitis, or a broken leg. Nothing you want to happen but hey, nothing but a good story. Some days off school and a bit of attention wouldn’t hurt either. It was only a few seconds later and then the words, they found a mass in her brain. She was 11 years old at the time – this shouldn’t happen.
I can not possibly imagine how my brother and sister in law felt at the time. When those words were first said to them. There is no doubt that the last year or so has been insanely hard on them. But I just can’t imagine what the reality is. I am so close to what they are going through, yet so far away.
The fact I haven’t been able to be as there for them as I should have been hurts. It hurts me and my husband a lot. I am more scared that not being able to be there for them, or my niece or nephew, hurts them too. But there is only so much we can all do at once.
Hopefully the fact that my immediate family is bigger means someone else has been able to carry some of the load. I fear that isn’t the case. I worry that they feel they can’t tell anyone how hard things really are. Especially about the day to day. Not just the worry of losing their precious girl, but managing how things have changed.
Life is different now. Without even knowing all of the day to days that much is clear. My niece has been changed by this. Yes, her looks have changed – so what. To me, from the outside, the biggest thing is that her personality and behaviour have changed. She is different. Yet there are still so many things the same.
I don’t live the day to day. And because of other factors (such as my father in law) I don’t talk to my brother often enough. Or my sister in law who is the main carer, without a break for long periods of time.
What really hurts the most is that, for my niece, there is no cure. Radical surgery gave her time. Every day there is the hope that something new will come.
My father in law got the gift of time. It may not have been enough for any of us, especially his wife and sons. But it came. A fight that was one and the prize was another 16 years together. My greatest wish right now is that the same gift can be given to my niece. That she gets the opportunity to experience life, in all of its glory. The joy, and horribleness of teenage years. Fights with parents. Exams. Planning for the future. Friends. Parties. First loves.
As I write these words I am realising something. It is happening to my family. It is real. But this is not my story to tell.
And maybe, just maybe that is the problem. So often these stories happen to us. They are real. But we don’t feel they are our stories to tell. It is not my parent. It is not my child. I can’t imagine the intricacies, I can’t imagine the reality. And that is true. But perhaps being just that little bit removed is why we can tell the story. How we can help. How we can get the message out there. Perhaps because we are not living the day to day reality we are freer to talk about it. Perhaps we are in a better position to fight for the bigger cause. Maybe these words can’t help those closest to me. But maybe, please God maybe, we can get the research and investment that is needed to make a difference.
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Sometimes the stories that aren't yours to tell hurt you the most. Fuck cancer, it sucks, but me saying that won't help you and your family, even though I wish it did. This is why we attend the all night thons at high school and throw extra dollar bills into jars at my high school football games. I hope the best for you and your family. Every single word of what you've written here makes me understand how much this hurts you. I wish you all the best through everything that you're going through, I truly truly do.
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