First, I felt the ants. Their little legs tickling mine. I felt them as I sat quietly at the dining room table. I felt them as I wandered around the supermarket. I felt them boldly marching over my skin as I jumped and yelped and slapped at them.
And then, just as quickly as they arrived, they were gone. I barely noticed their retreat – until I became aware of what had arrived in their place. Prickling and twitching. Static under my skin. Currents charging down my legs and arms and fingers and toes.
It had started. I didn’t have an ant problem. I had peripheral neuropathy.
Neuropathy is nerve damage that manifests in a range of ways, including pain, numbness and sensitivity, generally in the hands and feet. Chemotherapy-induced neuropathy is not uncommon and is certainly not specific to colorectal cancer treatment. However, the oxaliplatin drug that is used to treat advanced colorectal cancers is acknowledged to be particularly savage on the nerves.
Neuropathy can be a troublesome side effect to live with. The intensity of the sensations experienced should subside over time as my nerves repair, but in some cases, oxaliplatin-induced nerve damage is irreversible. With this in mind, my oncologist has kept a very close watch on my physical response to my chemotherapy regime and instructed me to inform him the minute anything changed. I have done that without exception at our fortnightly catch ups: the occasional numb sensation across the soles of my feet, the tingling in my fingers when I walked outside into a cold Melbourne day, and the prickling in my toes when I dared to move around the house without socks on. These were all classified as ‘acceptable’ side effects and I continued my chemotherapy without change.
When I got to the end of my 12 rounds of chemotherapy without significant neuropathy, I was quietly delighted. Sure, I had sensitivity to cold and a rather persistent throbbing sensation in my hands, but this was really nothing when compared to what I was preparing myself for. I was chuffed. I was especially proud of my body (let’s be honest, this body of mine has been defying a number of odds lately). I decided my physical activity must have played a role in thwarting the drug’s intended demolition of my nerves. My doctors supported this assessment, and medical research reinforces the notion that exercise reduces the occurrence of chemotherapy side effects. Another win for the exercise champ (that’s me).
So when I was trotting around enjoying life in my much anticipated ‘post-chemo, pre-surgery’ window, and the ants came and went, and the static came and stayed, I was mystified: “I have finished my chemotherapy weeks ago. I am done with oxaliplatin. What is happening to me?” And very soon thereafter, I was mad: “Can I not just get a break for one FREAKING second?” (or words to that effect).
Naturally, glass-half-full Nicole arrived without delay, keen to point out this clear confirmation that the chemotherapy drugs were still alive in my system, in all of their cancer-killing splendour. My blood tests reinforced my buoyancy – I have had a lower CEA count every time I have had blood taken since commencing my chemo pause. But as each day passed, new neuropathy sensations were introduced and their presence intensified.
It is baffling to experience numbness and pain simultaneously. It is all but impossible to explain the sensation to someone who has never experienced it. I have been at a loss to enlighten my loved ones as to this invisible set of symptoms. Each time I have tried to put a novice description together, a new feeling has arrived. Pulsing. Numbness. Aching. Itching. Burning.
For the moment, these sensations are permanent. I am now living in a state of seemingly inextinguishable electric shock.
I cannot extend my arms without losing sensation in my hands. My skeleton throbs. The skin on my feet prickles with pins and needles. My grip is weak. A cup of tea is now heavy enough to make my fingers buckle and warp.
I have never given much thought to hand strength. The erosion of mine feels cruel, particularly as every other muscle in my body has never been stronger. For a couple of workouts, I tried to convince myself I simply needed to focus and be tougher. But then I started dropping things – a lot of things. Glasses of water and forks full of food have slipped neatly from my grasp, as if I was never holding them at all. I have released a tray of luscious Boosa coffee all over our car. I have upended Joshua’s lunch all over the dog (much to his horror, and shortly thereafter, sheer delight).
I have had to make yet another series of changes to my routine. Carry less. Rest more. And eventually, I had to reconsider my 12 kilogram dumbbell chest press, mostly to avoid dropping one straight onto my face.
There are so many lessons in cancer, but the ‘when to push versus when to stop’ lesson is both constant and constantly changing. Lucky for me and my lat-growth game, cable-based weight machines are in abundance at Fitness First.
To experience this degree of nerve damage now has been frustrating for many reasons, but one stands out more than the rest: neuropathy has redirected my energy and attention from my liver resection. My inoperable liver is operable. When my medical team open me up on 31 October 2017, cut away two segments of my liver and 25 centimetres of my bowel, and stitch me back up again, I will be free of demonstrable disease.
This is big deal. In March of this year, I was told this was impossible. I was told this tumour and its metastatic mates would take me. I was told it was only a matter of time.
I didn’t accept the abridged version of my fairy tale when it was handed to me. I mean, sure, it took a couple of minutes for me to find my focus. For a moment, I felt like a stranger to myself. But then I took me back, stood me up, dusted me off and committed to keeping me going, through the highs and lows of life with this chronic disease that will now be with me for as long as I am me. I found a medical team who were prepared to support my fight for life and we have worked collaboratively to right my story ever since. This surgery is a glorious milestone in our efforts.
I want to be joyful and energised and thankful and focused – and generally, I am – until I relapse to clumsy, sloppy, inept, inattentive mess-mode. And of course, I am none of these things. My beautiful husband and protective mum would chide me for saying so. But that is what I feel like. And when you spy me walking from my car to a café and back again, dropping my keys and bankcard, unable to load food on to a fork, smearing my lipgloss straight off my lips, struggling to zip my bag up, tripping over my numb feet and throwing coffee all over my car, I promise you are not thinking “there goes a fierce cancer warrior”.
When I was told I had a terminal diagnosis, I assessed at the time that I had reached the apex of cancer-related loss. Or rock bottom, if you like. But this disease, its treatment and management, takes so much more from its unsuspecting host. I have gallantly side-stepped loss of life only to find myself face to face with loss of physical control, loss of independence and loss of confidence. Alive or dead, cancer shocks.
I know I cannot control my neuropathy. I try to control the tears of frustration that flow in its wake. And I will control my efforts toward making it all work. The cancer, the treatment, the change. It just is.
I have been asked a number of times this week how I am feeling about my surgery. I am excited. I am nervous about the pain and my lousy reaction to painkillers. I am anxious to know when I can work out again, because my training is something that I use to focus and clear my head and own my fight. And I remain in a state of butterfly-inducing, heart-rate increasing, smile-activating shock: I am going to do something that so many people said I couldn’t do.
It is so important that I acknowledge this today, for reasons that will become clearer in the coming weeks: every shock has the potential to unpick and unnerve. But this is not a given. Unwanted news and unpleasant experiences are fairly inevitable. But distress and despair and despondency are just tollgates through which we can pass, if we choose to. And just around the corner, undoubtedly, lays another shock. Bring it on, I say.