Bowel Cancer Australia

Thank you for taking on the Dry July challenge for Bowel Cancer Australia this year. We are pleased to announce we raised an astounding $384,404.24 and are extremely grateful for your awareness and fundraising efforts.

By taking part in Dry July, you’re supporting the expansion of Bowel Cancer Australia's specialist Bowel Care Nurse program, providing more bowel cancer patients with the care they deserve, as close to home as possible, so they can live their best lives.

A specialist Bowel Care Nurse is a registered nurse who has specialist knowledge and experience caring for patients with bowel cancer. Serving as a point of contact for patients and their families as they navigate the health system – providing advice, education, support and direct patient care.

Thanks to the support of Dry July fundraisers and donors like you, Bowel Cancer Australia was excited to this year fund five new specialist Bowel Care Nurses in Hobart (TAS), Mackay (QLD), Revesby (NSW), Rockingham (QLD), and Windsor Gardens (SA).

These dedicated Bowel Care Nurses help to improve bowel cancer outcomes in their communities by enabling patients to take a more active role in their bowel care treatment. Making sure patients and their families understand their options and receive the critical support they need – from that initial point of diagnosis all the way through their treatment pathway.

Despite being the third most diagnosed cancer, bowel cancer patients don’t receive the same level of support as other common cancers.

Every bowel cancer patient deserves to have access to a dedicated Bowel Care Nurse.

On behalf of all the patients, their loved ones and staff at Bowel Cancer Australia, we would like to thank you for your support and contribution to making a positive difference in the lives of people living with bowel cancer.

Grampians Health was delighted to welcome a new dedicated Bowel Care Nurse at Ballarat Base Hospital and St John of God Hospital Ballarat to support bowel cancer patients across the region and assist them in their treatment journey.

Providing care coordination, while identifying and bridging gaps in the patient journey, which has the potential to change outcomes within the region.

“During their treatment, local patients often meet with several different teams along the way, and navigating the information and appointments can be overwhelming at times. Having a centralised point of contact to provide clarity and reassurance has been warmly welcomed here at the service,” said Jaymee, specialist Bowel Care Nurse.

The funding for the Grampians region's dedicated Bowel Care Nurse position was made possible through Bowel Cancer Australia with the generous support of the Dry July Foundation.

I was 47 years old, working as a busy Psychiatrist, when I was diagnosed with Stage 4 sigmoid colon cancer out of the blue. My tumour was circumferential, so I didn’t experience any bowel symptoms. My eventual presentation was in fact due to liver capsule stretch from the extensive liver metastases.

It took a few weeks for me to be diagnosed as I was positive for Epstein Barr Virus, so my GP thought I had a viral hepatitis. This seemed to explain my deranged liver function tests, but over the weeks they deteriorated instead of improving. Liver ultrasound scan was normal, despite there being multiple liver metastases. It wasn’t until I had an MRI scan of my abdomen that the metastases were detected, along with a suspicious thickening in my sigmoid colon. My diagnosis was swiftly confirmed by colonoscopy and I found myself sitting in front of an Oncologist before I could process the news.

Since diagnosis in October 2023, I have had six rounds of chemotherapy, consisting of FOLFOXIRI with Bevacizumab. The response of my cancer has been miraculous. The disease in my liver has shrunk dramatically and is no longer metabolically active on PET scan. My primary tumour has also shrunk, and I am booked for a bowel resection in the near future. This is after my Oncologist initially said I was not a candidate for surgery as the cancer in the liver was so widespread.

I have had to stop working. I am filling my time with my beautiful family, physical fitness regimes, and learning to play the piano. Life is very different now. My medical team believe I will never be cured. If that is the case, I will live with this disease for as long as possible.

My one piece of advice for others: I am thankful every day that I have income protection insurance. I am the main earner for the family. I have 19-year-old twin sons. I had no risk factors for cancer, no family history and no personal medical history. However, cancer still happened and without my income protection we would be under huge financial stress.

I have learned to enjoy each day and feel truly blessed to be alive and to have access to such amazing medical treatment.

Bowel Cancer Australia have been an amazing support for me. I have joined The Movement, which is a Bowel Cancer Australia’s nurse moderated Facebook group. It is so important to link with others with similar issues, to be able to share advice and support. From this group I learnt about the benefits of icing to prevent peripheral neuropathy with one of the chemotherapy drugs, and was the first person in Townsville to use this, with great results so far.

There is another group called Mindful Movement which is all about encouraging us to move and exercise, which helps me to keep motivated on those difficult days.

I have had several sessions with Jo, the Bowel Care Nutritionist. She has helped me with my gut cramping, and to manage my post operative diet to minimise discomfort whilst optimising nutrition.

Bowel Cancer Australia are helping me get through this journey that none of us want to be on, and are an invaluable resource for people in my situation.

The program enables more patients to receive dedicated support from a local Bowel Care Nurse.

A Bowel Care Nurse is a registered nurse who has specialist knowledge and experience caring for patients with bowel cancer. Serving as a point of contact for patients and their families as they navigate the health system – providing advice, education, support and direct patient care to the regional communities.

These dedicated Bowel Care Nurses help to improve bowel cancer outcomes in their communities by enabling patients to take a more active role in their bowel care treatment. Making sure patients and their families understand their options and receive the critical support they need – from that initial point of diagnosis all the way through their treatment pathway.

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!