For Patients / 09 Aug, 2018

Jodie’s dance with breast cancer

Jodie Lydeker

Facing chemotherapy was like staring down my childhood fear of the dark

When I was diagnosed with invasive breast cancer three months ago, it was like running smack into a brick wall. Despite hearing words like tumour, surgery and radiation, the most hard-hitting word of all was ‘chemotherapy’.

Last time I checked, the number one fear for most people was public speaking, but I would make a calculated guess that number two 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 of treatment. As a facts-and-figures person 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 the medical staff at Icon Cancer Care Wesley, to 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 to say 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.

I then decided to stop seeking more information and instead make good use of all the research and stories I had collected to create a chemo shopping list (otherwise known as my ‘just in case’ list). I added everything from a chair for the shower through to a wig and a cold-press juicer. I also cut off my hair as the first big step to accepting the only thing I knew would actually happen.

The day before my first chemo session

It was while I was methodically cleaning out my bathroom cupboard the day before my first treatment that my newly-claimed stoicism began unravelling.

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-plus 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-plus 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 five surgeries/procedures in six weeks, the specialist appointments, the repeated forms and tests, the bomb-residue left on friends and families after telling them ‘my news’. Chemo was now about slowing down, catching my breath, and piecing together all that had happened up until that point. It was also about surrendering to what was yet to come.

The day of my first chemo session

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, 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 Icon Cancer Centre, 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 Icon 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. It was the casual conversation with the nurses, the reciprocated smile on my face, the tea and biccies trolley, making jokes about red cordial in the IV drip and knowing that all I had to worry about for the next four to five hours was the first four to five seconds of an IV needle sting. All of it 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 kilometres an hour. 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, it took 10 deep breaths. And a sedative. I put my hand to my chest and heard my heart beating. It was a reminder to change the dialogue again. There is life saving medication flowing through my veins, not poison. This was not the time to check out of the unknown and roll over into freak-out world. I repeated two words in my head to the sound of every heart beat: In. Out. And I learned a valuable lesson – take the sedatives early on treatment night and go to bed!


The day after my first chemo session

The first day after treatment, I didn’t really feel anything different. The second day, my thoughts and legs felt a little wobbly. Day three was, as the nurses had predicted, when things changed.

By then, the medication was doing its job and basically hitting the reset button in my body. For bad cells to be eradicated, I had accepted that good cells had to be sacrificed. At first, it felt like an out of body experience – like my head was disconnected from it. All I could do was listen to my body to hear what it needed. At times, it needed carbs – potatoes, rice, toast. At other times, it needed to binge on house renovation tv shows and someone to help shower and clothe me because my legs couldn’t hold me up.

And then four or five days later, I needed less sleep, less carbs, less help. I took notes every day about what I was feeling and eating so that I could use my first treatment experience to feel more comfortable predicting the unpredictable of future cycles.

Reflections

I did all I could to prepare for the physical impacts of chemo treatment. As for preparing for how I might feel with every other experience and side effect, I chose to be open to asking for help and constantly surprised at the wonderfully random sources of support that are offered.

I chose to do all I could to nurture and nourish my body to help recovery. And I embraced my fear of 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 be embraced rather than feared.

To follow more of Jodie’s reflections and story please visit her blog here.

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