I debated whether or not I should post this… Maybe just on Facebook. Maybe not at all. In the end, I decided not to.
I wrote it on day 3. And although I wax eloquent about sharing the real story in all it’s raw ugliness, I know that most don’t want to hear it. Cute and cuddly tales from the cancer ward are much more palatable – an uplifting message with a smiling picture to boot.
But this is life too. The low points. The bad shit.
We’re 3 weeks in now, and feel decades older and wiser and more exhausted. I had another rough night, one that I’m not at all ready to write about. So instead I’ll share this. And it feels like a relief to put it out there.
If you know and love my daughter, you may want to scroll past these ones. I’ll post something cute another day. There’s still plenty of cute.
* * *
It’s my first free moment in five hours. I might have taken 2 minutes to eat an ice cream cup for dinner. An ice cream cup I stole from the fridge full of patient snacks. That’s right, I steal from sick kids these days. Those IV poles slow them right down; I’m pretty sure I could take them.
Did I mention my inappropriate humour is on overdrive these days? I’m pretty sure there’s a psychological explanation to explain away anything I do and say right now. Carte blanche.
This afternoon, as I comforted my moaning and uncomfortable child, I assured her visiting uncle that a person can get used to anything. That even as her unhappiness caused him distress, I was taking it calmly in stride. Not because I’m a monster, but because I was getting used to being cancer-parent. Day 3 since diagnosis, and already a pro.
I’m just a fast study, I thought smugly. I got this.
Except for the part where I didn’t. And I don’t. At all. I don’t have any control here. I can’t fix this and even my best efforts are like fighting a forest fire with squirt gun. Useless. Helpless.
I’m relying on the professionals. And they really seem to know what they’re doing. And they really seem to care. But even with all their training and all their equipment and all their impressively long words, sometimes the fire wins.
Tonight discomfort turned to pain. My daughter screamed and cried and begged me to make it better.
I could only pretend to be calm. For her sake.
She may have an infection. Probably. Maybe. Or probably not. The story changes with everyone we talk to. While there are plenty of “infection fighting cells” in her blood (neutrophils) they aren’t doing their job that well. They only look the part. We’ve changed to a stronger antibiotic which we hope will kill that infection dead. If it is even the infection causing her escalating fever. It might just be the cancer. Maybe. Probably. There aren’t really many answers.
And the nasty leukaemia cells (blasts) are filling the marrow of her bones. Which makes them hurt. Her bones hurt. Not the achy, “maybe it’s gonna rain” kind of pain I’d imagined when I read this in a list of symptoms, but something much much worse.
And she had a small surgery to implant a tube into her, near her heart, which is a Very Good Thing in the long run – easy, painless blood samples, IV fluids and meds. But that means post anaesthesia nausea, soreness and a strange piece of hardware sticking out of her chest. Despite my “cyborgs are cool” pep talk, this is a horrifying thing to her.
As I lay down on the very edge of her bed trying to massage peace and calm into her body while she cried pitifully, I could only think: This is just the beginning.
I have to explain that, no, we aren’t going home anytime soon; and that she can’t take the tube out; and that even though she’s fallen in love with her nurse there’s a shift change right around the corner.
But her pain is the worst.
I have never prayed with such desperation. I don’t know that I was using words, but the meaning was resoundingly clear. They say there’s no atheists in foxholes. I don’t know about that. But I’m positive that even the most skeptical soul will be begging someone, or something for mercy, when their baby is in agony. It is a profoundly horrific experience. I would gladly, gleefully, gratefully suffer in her place if I could.
B is finally asleep, drugged into peace. Thank you morphine.
The moral of the story is… there is no moral that makes a story like this worth the telling. It’s just to be survived. Please God.
So here’s me, at a low point. Cancer is evil. I hate it more than words can express.
So Here's Us... 