I smell disgusting. Mat and Mum say I don’t, but I know they’re lying. Going two months without a shower, while you have healing wounds and leaking sores is not a recipe for great personal hygiene. I smell like butt.
I feel like I have a UTI most of the time so I am on my second course of antibiotics since being home, but nothing has helped. I don’t know if it’s sensitivity from the catheter, or if it’s the constant infections but every time I am lowered into my chair, even with a cushion underneath me, it is horribly uncomfortable.
In fact, I am so disgusting, that this afternoon we decide it is time to do something about it. Mum puts a towel around my neck and leans me all the way back in my chair. Filling a jug with warm water and holding a tub behind me, she pours the liquid over my hair and massages shampoo into it. I breathe the smell of coconut deep into my lungs and wonder why we hadn’t we thought of this before.
Mum’s phone rings. It is my Aunty, calling to tell us that my cousin – who I grew up with, who is one year older than me, who has a baby girl and a pregnant wife, and who is in the advanced stages of cancer – is in hospital and extremely unwell.
“She thinks this is it”, Mum tells me in tears.
Everything freezes. I can’t seem to orientate this news into our new world, the bubble of life that exists only within this room. Where is reality? Here or there? It can’t be both. This can’t be happening. I shut it out. This can’t be happening.
We operate in silence for the next couple of hours.
Unbearable cramps start to ravage my stomach; so unbearable they make me cry out in pain. I stifle my cries. This is not about me. Today cannot be about me.
Some time passes, a phone beeps, Mum walks over to me, strokes my hair, and bursts into tears.
“He’s gone Luce. He’s gone”.
Everything is quiet. Everything is still. I am consumed with sadness and guilt.
It should have been me.
I shouldn’t be here, and he should. It’s as simple as that. I don’t know what to do, how to feel, how to react. I don’t want mum to have to be here with me when she should be at home with her sister.
My sides feel like they are splitting open and I scream out in pain.
Mat and Mum sit next to my bed and take it in turns to tell me stories, pulling from their imaginations and reading from their phones to try and distract me from the pain. Mat makes up a story about a penguin called Patrick and Mum reads a story about a woman who loses her friends necklace and spends the rest of her life in misery saving up to replace it. It was a very depressing story.
I can’t eat or drink. I throw up clear liquid and writhe in pain.
We call the advice nurse and she tells us that, given my recent abdominal surgery there is a risk of blockage and I need to come in as soon as possible. The cost will be $500 for the return trip in an ambulance, plus a co-pay for the trip to ER.
The house is silent as we wait for the ambulance.
Once in the ER I drift in and out of sleep, periodically throwing up the litres upon litres of barium they are making me drink. I have to wait an hour for my MRI scan, and then another hour after for the results.
The intravenous drugs they have given me for the pain start to kick in.
It is midnight.
Mum listens to The Archers quietly on her phone in the corner of the room, anything to keep her from falling asleep on me. Her eyes are swollen, her face ashen with grief, but she conjures a determined smile when she catches me looking at her. I close my eyes to spare her mask.
To be in so much pain following such awful news, to be so tired, so spent, but to force yourself to be so strong for someone else. This is epitome of love to me. It’s not hugs and kisses and sunny days. It’s not sending gifts, making impassioned speeches and sharing joy.
Selflessly bearing your burden of pain and suffering, gritting your teeth against the slings and arrows of the world and pretending it’s all OK to spare the suffering of the ones you love. To make it just that tiny bit better, if you can.
At two in the morning the doctor returns.
“The good news is that there is no blockage, just obstipation as your body gets used to the colostomy. The nausea was probably a combination of the pain and another UTI, so we’ve given you some morphine and another course of antibiotics”.
We arrive home in the early hours of the morning, exhausted and defeated.
Today was the worst day.