June 02, 2017

The bounce.

Tuesdays are probably the nastiest days. Chemo Tuesdays. They are my low point.

I am on a fortnightly chemotherapy treatment schedule. This means every second Monday, I have an in-hospital treatment on the Epworth Eastern Day Oncology ward that lasts around six hours. On Monday evenings, I leave the ward wearing a take-home pump for a further 46 hours of slow-infusion treatment, returning to the hospital on Wednesday afternoon to have the pump removed and complete my chemo round for another fortnight. In my latest discussions with my oncologist, we have agreed that this will likely be the plan – my life – for up to twelve months.

I have taken ownership of the hashtag #chemorocks on social media and spoken before about my commitment to my poison. Chemo Mondays come with a high. I start my day with a visit to my oncologist and get to hear about the positive results of my ongoing treatment. I walk into the ward at Epworth Eastern to warm smiles and bright faces. People who know me by name and look after me and my family with such genuine care. These fortnightly Mondays bring an energy and focus that is central to my cancer fight. On Chemo Mondays, my spirits are up.

Over a series of hours, my body starts to wrestle with my spirit. I struggle to keep my eyes open and lose all desire for food and develop a twitch and need help to walk and can’t swallow anything that hasn’t been heated above room temperature. My toes and my fingers tingle and a cool breeze makes my lips and hands contort.

By Tuesday, I am ready for a break. Instead, I wear my doggy bag of fluorouracil, moving in and out of a groggy sleep on the couch, trying to kick my nausea. I largely spend the day wishing it were Wednesday. Because on Chemo Wednesdays, things are looking up. I wake with a sense of relief and anticipation, ready to have my pump removed and spend a couple of days resting before I get back to my new normal routine. I have a scheduled appointment and a plan. I have options as to how I want to spend my time. Opportunities to exercise or have a coffee date or explore with our beautiful baby boy are just around the corner.

But on Chemo Tuesday, I am stranded. Captive on my couch. I can’t cuddle Joshua for fear that he might make a curious grab for the needle sticking into my chest. I can’t get out and about because I feel rather revolting and have a bottle of poison hanging around my neck. Despite going into my Monday treatment with my head high, and knowing I will come out on Wednesday with a renewed focus, Chemo Tuesday is my prevailing low point. I cry more on this day. I am more likely to feel resentful of the seemingly beautiful lives that are being lived out around my own. I get frustrated and short tempered with the people I love. It’s just a stupid, rotten day.

I have been teaching Joshua about things that bounce. Like round plastic toys. And foam blocks. His uncle Seany’s basketball. And Mummy. Mummy can bounce. In fact, Mummy must bounce, out of Chemo Tuesday, and back into life as normal.

This bounce, from my low self to my bright self, my real self, is my resilience at work. My capacity to recover from difficulties and spring back; not just to survive, but to thrive. I have always thought of myself as a fairly resilient person. But really, I wouldn’t consider myself to have faced particularly threatening or hostile circumstances. Life has been kind. At work, in the face of stress or frustration, I am able to keep an authentic smile on my face. When I was pregnant, I had very few moments of anxiety or fear. I have grown up with single-sided deafness and found it difficult to make friends, play team sports or engage actively in noisy, social environments – but I have just rolled with that too. My glass is half full. If I have needed help, I have sought it. From family, from Tim, from psychologists. And as I have encountered life’s many speed bumps, I have learnt more about myself and my coping mechanisms.

A stage IV cancer diagnosis is a little more, shall we say, pronounced, than a speed bump. It is difficult to articulate an appropriate analogy. But I would certainly consider it a particularly adverse set of circumstances, unlike anything I have faced before. An onslaught. It is not just the diagnosis itself that is a challenge – it is the treatments that sap me of my energy and focus and vigour. Fortnight, after fortnight, after fortnight. As proud and positive as I am on a Monday, I know Tuesday is coming. An uneasiness starts to build. A bad taste sits at the back of my throat. My mind uses these delightful cues to remind me that I am going to feel foul, and in doing so, also suggests that I may be losing control of my optimistic outlook.

Life’s challenges are generally unexpected and may knock us for six, but experience has shown me that with time and focus, I can recover and grow stronger. Bounce back. The problem with a relentless, seemingly endless barrage of adversity is the effect that it has on my capacity to bounce. Each fortnightly knock comes with the same brute force, with little time to recover between each blow. And as I experience more and more of these knocks, I find myself chewing up time anticipating the low point, rather than just recovering from them. My low points feel lower and eventually, my bounce will suffer too.

I have included an expertly drawn chart to illustrate my point :)



Why bounce? Because it is hard. Because it is rough. Because there are times that I just cannot do this anymore. Because low points are natural and necessary and allow me to reset. To build true resilience – to flourish despite my circumstances – I need to bounce back to my pre-treatment starting point, or even higher if I can manage it. This is really my only opportunity to understand my mindset and control my outlook and stay ahead of my breaking point. For me, my bounce is not just about staying well and focusing on my treatment, and ultimately, my recovery. It is about using my experience of cancer as a learning exercise. An opportunity to grow.

So I want to share my most recent nugget of learning. To make this work, to stay in the game, to keep myself together and indeed, to thrive, I need to inject an extra bounce. My naturally sunny outlook isn’t enough to get me through this. My natural immune response isn’t enough either. I have to decide to push. For more bounce. More recovery. More optimism. Here’s another tasty chart.



At the point when I my body has pushed through my drug-induced side effects, the next steps are up to me. What does this extra bounce look like? Choosing to have a shower. Go to the gym. Work. Research. Book a massage. Whatever it is, it is an intentional decision. A focused effort by my brain and my body to feel better than I did last time, and in doing so, have a different experience of my treatment cycle. Meaning that even if my treatment takes me to a new low, I am able to use my bounce to find a countering high. And equally, if my outlook starts to falter in the lead up to my treatments, I have plenty of bouncy slack before I hit a low point. This concentrated effort to inject more bounce gives me an opportunity to design my own coping mechanisms and ultimately, build resilience.

It would be easy to classify my treatments as a monotonous and dreary series of fortnights. To search for sympathy and comfort. To languish on the couch. But these treatments are my life. Not to mention, life saving and life giving. They offer so much opportunity to learn. So I am learning as much as I can.

And for those who are interested, Joshua is also progressing well with bouncing foam blocks and toys – although he may have a few more focused efforts ahead of him before he has mastered his uncle Seany’s basketball!