I presented to my GP in July 2019 with a sudden and persistent change of bowel habits (basically some diarrhoea that hung around for a week or so).
Over the next three months, I had a few blood tests, a stool test, and a colonoscopy, after which I was met in recovery by the surgeon.
He told me he had found a mass in the bowel, and there were some query spots in the liver.
I was sent immediately for a CT scan and then sat in the same surgeon’s office, three days before turning 40, to be told I had Stage 4 metastatic bowel cancer.
Due to the 21 bi-lobar mets in my liver, I was told it was ‘unresectable’ and so I was to start palliative chemotherapy within three weeks.
One week later, in went the port-a-cath, and then one week after that I started chemotherapy – initially six rounds of FOLFOXIRI and then a re-scan to hopefully show a reduction.
My feelings in the initial few days after diagnosis were of sadness, anger, fear, embarrassment and a myriad of other things.
My 3-year-old daughter, who was blissfully unaware of how her life had changed, wrestled it all out of me and I made a conscious decision to give it everything I had to fight this disease.
I needed to understand bowel cancer, liver function and my intended chemo regime so I delved deep into a supportive and integrated oncology approach and researched exercise and nutrition in the bowel cancer space.
I played the ‘pleasant squeaky wheel’ at my appointments with the Oncologist and took control of what I could control.
Each fortnight the aim was to turn up to treatment in the best physical shape as possible. I exercised every single day; I even took in floor pedals while I was being infused - there is plenty of research supporting improved chemo delivery to the tumour cell during low to moderate cardio exercises during the time of infusion. It even helped my nausea!!
My job is a Fitness Coach teaching the Personal Trainer qualification, so this was right in my wheelhouse. I made immediate changes to my diet (no alcohol, no red meat, no processed meat, plant-based proteins, fermented foods, green leafy vegetables, Vit D supplements, and 3-4ltrs of water per day).
I made it to my 6th treatment and the re-scan still weighing the same amount and keeping most side effects at bay. (I found the lethargy and neuropathy the hardest). The scan showed enough of a reduction in most tumours that I was able to entertain surgery discussions.
After a few knock backs, in Feb 2020 I was given the go ahead for liver resection, recovery six weeks, bowel resection, recover six weeks then mop-up chemo - a path that I knew would be challenging but there was a chance of NED status at the end. Sign me up!
COVID arrived, and some logistical issues almost prevented surgery in April, but I got there. 75% of liver volume removed (right hepatectomy and cholecystectomy) and spent 3 days in ICU and 7 days on the ward. I then recovered (slowly) and at Week 3 I found a DVT around my port site so had to start 2 x day injections of blood thinner.
Recovery continued (still training every day) and I was back on the table after 7 weeks (in June 2020) for a low anterior bowel resection.
Once again, 3 days in ICU and 7 days on ward. It took 9 days for the bowels to start working and there was substantial liver ascites which kept me in hospital a little longer than expected.
After 6 weeks of recovery, I was back in for mop-up (only 5FU thankfully) as the neuropathy was in full swing and the feet and hands were mostly numb.
I coped quite well with the 6 rounds of mop-up before once again, sitting in the specialist office, 3 days before turning 41 to be told “we can’t see anything there, I think it’s all gone!”
What a ridiculous 365 days but geez I’ve learnt a lot through this experience.
I lasted 8 months of NED until it showed up again in my liver, and I was thrust back in to chemo again (FOLFOXIRI w/ MVASI) for 6 rounds and then underwent another liver resection in Oct 2021 this time lasting 9 months before it once again showed up in the liver. I've just completed 4 rounds of FOLFOX and am awaiting scan results (Sept 22) to make plans for another resection. The fact that it only seems to recur in the liver means we have a few extra options to discuss this time including the install of a HAI Pump for direct chemo delivery to the liver, and also some preliminary discussions around liver transplants. Watch this space!!
Here are my words of wisdom or tips and tricks if you like:
Don’t just ‘control what you can control’ - dominate it! I empowered myself with knowledge and built a strong supportive network around me.
Always go for 2nd opinions and be forthcoming with your Oncologist with this. It happens quite a lot - and knowing how quickly the cancer space is changing you want to make sure they are on their game!
I had created an internal ecosystem somehow that had allowed the cancer to thrive - Make wholesale changes to that environment (i.e., diet and gut biome) - it’s like taking a fish out of water.
Allow friends/family to help - you don’t have to fight this on your own - it will build stronger relationships, deepen connections and tap into an under-current of love, support that we normally don’t get access to - embrace that!
I will end by expressing my gratitude for the Bowel Cancer Australia website and Facebook group 'The Movement - Wellness Beyond Diagnosis', and many other online forums in the bowel cancer space.
It’s in those darker times I took solace in the fact that others where in this fight too, and I take great pride in being able to share my story to inspire others to keep fighting.
Not only are we survivors but we grow stronger each time we get knocked down - so here’s to getting knocked down, finding your feet (even though they are numb), and choosing to stride towards what life has in store!