Each time the bag of chemo is hung up on the hook and line opened to my chest, I silently bless that chemical cocktail, blended according to my chart; shaken not stirred. I call on Kali, Durga, Tara, Mary; any ferociously loving female energy I can think of to course through my veins and burn through those tumours. “Please remove the cancer. Go easy on my immune system and I’d really prefer not to puke!”
The first time, on hyper-alert, I feel surprised by the cold as it enters my veins, but the nurse is ready with a warm blanket: “I need to keep close observation on you, to see how your body tolerates it. Are you feeling okay?”
“Yeah! Really okay!” I say, tripping. “I’m getting this pinpoint of bright light behind my eyes and it’s slowly expanding into a diamond shape with, like, shimmering stars all around it. It’s now expanded beyond my body and has encased me in light. So cool!”
She worriedly stops the flow and calls a Chief Medical Oncologist down in Victoria. The directive is received: No previous experience of this reaction. Nothing in the counter-indications. Proceed.
Sadly, it never happens again. It was cool!
The chemo nurses are kind and knowledgable. I am told by other patients that they are the true experts, but they brush off the compliment in keeping with their pay-grade.
So while their care makes it tolerable, I can’t help being freaked by what seems to be considered normal in here: we are lined-up around a room on reclining chairs each with it’s own iv pole. All of us are in different states of weight-loss, hair-loss, greyness, mostly checked-out, sleeping. We are all hooked-up to beeping machines in what feels like one of those automated milking parlours, only in reverse.
All the nurses wear protective gear so no inch of flesh is exposed to potential chemical burns. What the hell am I putting into my body? But this is why I have had a permanent port inserted into my chest with a line straight into my vena cava delivering the chemo directly to my right auricle rather than damage the veins in my arms. An elegant solution, but oh, my poor heart. She innocently keeps on pumping, toxins and all!
And each and every time someone is attended to, another pair of gloves, another plastic cap on the thermometer, another plastic line and bag and needle and canula and gown and shoe covers and hat gets discarded. Where is that dealt with? Is anyone responsible for weighing the balance of saving human lives at the cost of slowly filling our planet with plastic waste? Has anyone thought this through?
And these toxic chemicals; where do they go? We are told to drink lots of fluids to flush them out rather than letting them dangerously linger and with that comes the stipulation that no-one can use the same toilet as me for 24hrs after treatment for fear of burns inflicted by my pee drips. With far too much time on my hands, I have to admit to confusedly conjuring-up a superhero villain with deadly peeing powers. I play with a name; The Urinator? Wonderpeer? Supeewoman? I settle on plain Chemokiller. As I say, far too much down time.
More sobering was a true tale from a friend looking for a home on the Gulf Islands of BC. She was advised to buy up above other residences so the water source is not contaminated by drug residues urinated into the ground water. This returns me to questioning our wisdom on the macro scale but also arouses guilty concern for the Cottonwood tree that I had to go and pee behind after my first dose, when I was sure I’d be fine to go river rafting on a hot summer day. Did I kill the roots? Should I have stayed home and captured it? The excursion was exhilirating, until I fried in the sun. Something about ultraviolet light and chemicals in the bloodstream. I seem to remember they had warned me to stay out of the sun. Lesson learned. I can’t power through this.
Instead it was to become a relentless, debilitating marathon of returning for more and watching its effects.
Each treatment starts with a heavy blanket of fatigue and nausea as I wave goodbye to my mind.
The chemicals target all fast growing cells in the body;
Hair follicles - which is why I lose my hair. Yes, everywhere.
Nails - mine don’t blacken like some peoples’, but I get ridges and a white line from every dose a bit like rings for each year on a tree.
Inside the mouth - causing ulcers, tastebud loss and therefore taste distortion.
The stomach lining and intestinal tract - hence pain and nausea on eating, discomfort and distress with digestion and elimination.
And, of course, white blood cells - so the much needed immune system starts to fail.
I get bone pain in my legs from injections to boost cell production in the bone marrow, which feels like a deep bruise constantly being pressed and keeps me awake most nights. It was a toss-up between that or the gut pain from painkillers.
I develop an acute sensitivity to noise; the knife on the chopping board, cutlery touching a plate or sudden laughter, so our family dinner in the kitchen starts to be off-limits for me.
As the treatments progress and all these symptoms worsen with the cumulative effect, what scares me the most is the increasing neuropathy in my finger tips and toes which can become permanent. It is a burning tingle and numbness, so I struggle with buttons and zips, choose the smoothest pens to write with and fumble with puzzle pieces, the only pastime left as reading demands too much brain power.
And more often now, when Freya and Elliot get home from school they rouse me from a depressive fetal position under my covers and sometimes join me on the bed to share their day. My love for them and their sweet concern helps me find the strength to keep going. But God, I want to quit! As soon as I feel vaguely human again and able to do life a little, my next damn dose is scheduled. They certainly know what they are doing with doses timed to kill what they can of the cancer without quite killing me.
Brilliant medical precision. But it’s a living hell.
This is fascinating to read Emma. People often don't share the details beyond basics like hair loss and nausea. I had never heard that about urine! And what about households that only have one toilet, I find myself wondering.... Appreciate your honest sharing of your journey 🙏