Embracing the fear of chemotherapy
Last time I checked, the number 1 fear for most people was public speaking, but I would make a calculated guess that number 2 would be chemotherapy. I can only relate it to the fear of the dark I had as a kid – I didn’t know what monsters might be lurking under my bed or around a dark corner. And until I could muster the courage to turn a light on, my childhood mind continued to be convinced that whatever may be waiting for me was intending to do me harm.
Chemo had the same effect on my adult mind leading up to my first round. In my working life, I had mastered the art of treading water in a sea of information-overload with data analysis, projections, and evidence-based recommendations. Following my cancer diagnosis, I tried to do the same thing. From reading all the information booklets about chemotherapy, talking to medical staff, taking a ‘sensible’ approach with the Google search button, to listening to other people who had been through chemo, or knew someone who had been through chemo. And yet at the end, I was left scrambling around unable to find a light switch in the dark scary world of The Unknown. The only fact I knew was that my hair would eventually fall out. Everything else was as scientific as guessing how many jelly beans were in a jar.
The most comforting reflection I received from a dear friend was that the fear of what might happen is nothing compared to what actually does happen. Our brains, after all, are hard-wired to fill in missing pieces of a story. They love to speculate, to imagine as many possible scenarios as we give space for, and to ultimately allow our deepest fears to wreak havoc during what otherwise feels like a car crash in slow motion. So, I decided to make good use of all the information and stories I had collected and created a chemo shopping list (otherwise known as my ‘just in case’ list). I added everything from black nail polish and a chair for the shower through to a wig and cold press juicer.
It was while I was methodically cleaning out my bathroom cupboard the day before my first treatment that my newly-claimed stoicism began unraveling. Strangely enough, it wasn’t the light-hearted jokes about not needing hair styling products for the next two years. Rather, it was finding the salt and bicarb soda purchases from my chemo shopping spree and realising I had no idea what the answer was to a seemingly innocuous question: whether to start mouth rinses that first night, or just wait and see if I developed mouth ulcers. And so I sat on the bathroom floor and cried.
It was a timely reminder that regardless of how much planning and preparation I had done to that point, I still didn’t have the answers. All I could do was choose to be ok with ‘just in case’. I didn’t know how many of the 20+ potential side-effects I would experience or to what degree. But then I found a packet of an old antibiotics script and saw that those too had a list of 20+ potential side effects, some similar to chemo, and yet I never thought twice about taking them because I viewed those drugs as medicine.
And there it was – the one resounding fact in all of this: whether I thought I would get through it, or not get through it, both scenarios were right. It came down to how I viewed my chemo treatment: as a friend or a foe. I chose friend. I embraced it as a much-needed respite from being stuck inside a hamster wheel since diagnosis – the futile frantic pace of running in one spot not going anywhere. That’s how it feels. The five surgeries/procedures in six weeks, follow ups with surgeons, oncologists, radiation oncologists, physiotherapists, exercise physiologists, CT scans, bone scans, colonoscopies, pap smears, dental chairs. And still no god damn apple pie on the hospital dinner menu! Chemo was now about slowing down, catching my breath, and trying to process all that had happened.
Despite pulling myself back together the night before, I woke up with what I could only imagine would be similar feelings for someone walking a tight-rope between two skyscrapers. Completely pumped up with confidence from all the preparation and planning, but yet breathless with self-doubt about whether I tied the ends of the rope correctly. All the sanity and comfort of the chemo shopping spree had flown out of my mental window while I was driving to the hospital.
Walking into the waiting area of the chemo clinic, I imagined putting on a new pair of glasses. I looked around and saw faces of support from a community that I didn’t even need to meet, rather than those of other cancer patients. I saw smiles on the faces of each nurse invested in my care, rather than those of clinical staff in a hospital just doing their job. I saw bags of medicine hanging from an IV stand intending to save my life, rather than toxic drugs intending to cause me harm. So the casual conversation with the nurses, the reciprocated smile on my face, the tea and biccies trolley, the quiet time to read and refocus my thoughts, making jokes about red cordial in the IV drip, all became part of a silent dialogue on repeat: I am ok. I will be ok.
A few hours after coming home, I felt anything BUT ok. I was wired. In fact, I was contemplating a stand-up comedy career. All I could feel was a bang bang bang inside my head. Jumbled garbage coming out of my mouth. Twitches and ticks from my hands. Talking 200 km/hr. It was like going to bed with a ticking time bomb. But it wasn’t the chemo – it was the steroids.
To get to sleep that night, it took 10 deep breaths. And a sedative. I put my hand to my chest and heard my heart beating again. It was a reminder to change the dialogue: There is life saving medication flowing through my veins, not poison. I repeated two words in my head to the sound of every heart beat: In. Out. This was not the time to check out of The Unknown and roll over into Freak-out World. And I learned a valuable lesson – take the sedatives early on treatment night and go to bed!
In the end, I embraced the dark. I chose to trust that my feet would continue to move one foot in front of the other, that my outstretched arms would prevent me from face-planting into a wall (or a monster), and that whatever may be out there around the corner could just as easily sit with me rather than chase after me.
I've included more about how I prepared for chemo and have managed my treatment in my learnings page, Planning for 'just in case'.
A version of this blog also appears on patient blogs for Icon Cancer Centre and Starts at 60.
