When many people found out that my daughter’s tumour was benign they thought that because it was removed successfully that life would return to normal, just like that. Because it wasn’t malignant, cancer, it was thought that everything would be just like it used to be, right after the surgery.
Perhaps to a certain extent I had even subconsciously hoped that too. I was well aware of the life long medical consequences that my daughter would carry after having an enormous craniopharyngioma; the Panhypopituitarism, the complete and total hormone replacement, wearing a medical alert bracelet and never leaving home without her emergency, life saving steroid injection. Not to mention the risks of Hypothalamic damage; sleep disturbance, hyperphagia, slowed metabolism, and god forbid the much feared ‘hypothalamic obesity’. But what I wasn’t aware of was the amount of time it would take to ‘get my daughter back’. When your child is about to undergo an emergency surgery that will save their lives, the last thing on your mind is ‘what will life be like afterwards?’ You have one, single wish and that is that your child will survive the operation.
There was the initial elation at the successful surgery, at the complete resection of the tumour. That was a high. There was even rejoicing at the onset of pituitary failure, or panhypopituitarism because that meant one thing: MY DAUGHTER WAS ALIVE. I remember the day before I took my daughter for her diagnostic CT scan, I’d said to my husband that she could have a craniopharyngioma, and if she did, it would be OK. He’d shuddered, but she’d be on lifelong medication in order to stay alive! That would be terrible, he’d said. But I’d shaken my head, no it wouldn’t, I’d said, it would mean that she’d be alive. Hypothyroidism, Adrenal Insufficiency, Diabetes Insipidus, Growth Hormone Deficiency, Gonadotropin Insufficiency. Bring it on. It means she’s alive.
The lows are hard. I’m having a low today. I miss my daughter. Since the surgery a few weeks ago I’ve barely had a glimpse of her. Her new face, her new body are unpredictable to me, ruled by the drugs that keep her alive. Her skin is ivory pale, cool and clammy to touch, chilly extremities. She has random hot flushes. Her eyes are sunken and dark, her face sometimes puffy, her tummy ballooning with enormous fluid shifts and changing steroid doses. When I try and peer deep into her eyes, to catch a glimpse of her in there, to meet her for a second, I can’t see her. She stares back, almost coldly sometimes, thinking of something else. Often food. Often nothing. There is anger there, frustration. I love her and I miss her. She is emotionally labile, swinging from being happily content to loud fits of hollow sobbing. Repetitive cries that ring out over and over again, there is something vacant about those cries, they are almost empty but I know that she is in there somewhere, screaming for me, for the old her who she also misses. Then there is the shouting and a need to throw things to express herself. I encourage her to punch cushions, my three year old will take them to her so she can throw them to let it all out. She directs her anger and frustration at me, it’s much easier to blame someone you know loves you unconditionally. “You made me really ANGRY!” She screams. Her brain is still agitated, shifting, settling, healing from the incredible break to it’s integrity, the violation in surgery. Tissue that should never have to see the light of day. And now it tries to settle itself back into a new norm, tentatively filling the gaping void the tumour left behind. When I hear her sobbing uncontrollably I feel like screaming with her. I hate the tumour for doing this to her, for making her suffer, for making us all suffer tenfold with her. Cracking my broken heart into even tinier pieces with each new tear she sheds. It’s all to easy to whack up a photo and status update on Facebook and look strong, but these moments, inbetween the updates is the reality. A sobbing child and a mum that runs to the bedroom to scream into her pillow. Screaming at the tumour for being there in the first place, for choosing my beautiful daughter’s brain to destroy. Screaming at what life dished up. Screaming because I want ‘normal’ back again.
Hope for a new ‘Normal’
It is still early days, very early days and there is so much room for things to change and improve. There is the hope, belief and a grim determination that things will become normal again. Belief that her short term memory will come back, that the hyperphagia (constant hunger) will go, that she won’t develop morbid hypothalamic obesity in the next few months. That we will all soon adjust to her medications and know exactly when we need to adjust the dose and that she will do too. There is thankfulness in the medicines that keep her alive and a belief that alternative medicines and therapies will slowly begin to improve her quality of life too.
More on our experiences of our daughter’s recent diagnosis with a brain tumour: When they told me my daughter had a brain tumour…and how I already knew, and My Gethsemane; the night before my daughter had her brain tumour removed