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is this a giant insulting moneky wrench? July 11, 2017

Filed under: Uncategorized — springtwist @ 9:32 pm

Everyone has been checking in with me to see how I am doing with all of this, and wanting to her updates from me so I wanted to do a bigger update about where I am right now and what I’ve been thinking about recently.

FIrst off: I really want to tell you all that I’m fine. I really am fine. It’s hard and I hate it and I would just about trade anything to make this not our life, but it is and we have to deal with it and keep carrying on because there’s no other choice. I couldn’t get off this crazy roller coaster if I wanted to, so there’s nothing to do but keep at it. And with all that in mind, I can tell you that I am coping okay. Do not worry about me. You all have been fantastic in helping us out with the things we need, supporting me at the hospital with food drop offs and jim at home with childcare and any odd jobs or groceries that he needs help with. There has also been a couple spontaneous and unexplained meals that have shown up on our doorstep. Thank you thank you thank you. Seriously when we were first diagnosed I thought that the novelty would wear off in a few months and the support would peter out. We are seven months in and that hasn’t happened. I shouldn’t be surprised by this at all.


I share these posts, and my photos and updates  with you guys because I want people to see this side of cancer. I don’t need sympathy but what I do need is for you to witness the hard side of this, because it is not often portrayed or talked about, and it’s important that it is. Many families go through this. The boy in the room next door, the four kids across the hall, the dozen or so in the next hallway. There are about 60 kids at any one time staying at sickkids for treatment, and that is only a fraction of the number of all the cases that come through here each year. There are somewhere between 900-1000 kids diagnosed each year in canada. So yes, it’s important that I share with you what this is like. Because it could have been any of your kids. Because you may come across it again at another time, with another family you may know. And even if you never meet another child with cancer, awareness is important.


The canadian cancer society says that “Childhood cancer is relatively uncommon. However, it remains the most common disease-related cause of death – more than asthma, diabetes, cystic fibrosis and AIDS combined. It is second only to injury-related deaths among Canadian children.”


Many people have told me how great it is that she is so little that she won’t be able to remember most of this. But I think that sometimes it’s okay to go through something really hard and remember it later on. This is ugly and scary, but it will be a part of her story forever and it will shape who she becomes.


It’s hard to know that this bad shit is happening and it’s hard to feel utterly powerless about it. But at the same time, it’s okay for something to be uncomfortable and scary and painful. It is okay to just sit with that and recognize it for what it is. We live in a quick-fix society that wants a solution to most things in a very timely manner so we can do away with any sort of uncomfortable feeling or situation. But there is no magic quick fix to this. How I wish there was. In time, maybe there will be an easier, more surefire solution but not quite yet. The closest I can get to a solution right now is to be here in this room seeing her through her bone marrow transplant. And it’s scary and painful and that’s just what it is and that’s that.

I need people to stop acting like they know that she will be okay. I know it is well meant and people are trying to be comforting, but it’s getting weird hearing people try to comfort me by saying that she is so strong and she will be fine and she will beat this. And I hear this over and over and over, from people face to face and from society at large. The truth is, and everybody should know this by now, she might not be fine. Kids with cancer have better outcomes than they ever have before. Kids who are diagnosed with stage four neuroblastoma have better outcomes than they ever have before. Medical science is moving fast and it’s making big changes, and yet, in all seriousness, the outcomes are still shitty. You can google it if you want, it ain’t pretty. So lets just be totally upfront about this, okay? Nobody can tell me for certain that she will survive. Not even the doctors. Not even the bone marrow specialists. And nobody needs to pretend that this is not the case or try to not remind me about it or protect me from thinking about it, because I know this fact better than anyone. I have known it for seven months. Our family lives with this fact every day. We are well aware, statistically speaking, of how kids with high risk neuroblastoma fare in the long run. And telling me that she’s brave and trying to assure me that she will be fine won’t change it or take it away.


For some reason, and I haven’t worked out why yet, but people talk about cancer the same way they talk about mental illness. The narrative in both is that if the person is strong and tries hard enough, they will get through it fine. And it’s just not true – you don’t cure cancer with willpower. Thalia will not cure her cancer by being brave and strong. In fact she has no idea that she has cancer, she doesn’t even know what cancer is, and she is not being brave about this we are making her go through with it. She hates all of this and she doesn’t understand why we can’t go home.


The other thing I hate about this common narrative is that it implies that all the people who didn’t survive cancer simply weren’t trying hard enough. That is bullshit. Can we please change the way we talk about cancer so we no longer insult or blame those who were lost to it.


The cancer ribbon for pediatric cancer awareness is gold. I often see it being portrayed with glitter. Let’s be very clear here – there is nothing sparkly about this. Cancer is not shimmery or shiny. The only thing that sparkles here is the kids who, simply by luck and no fault of their own, have to bear this.