Bowel Cancer Australia

Every cancer story’s different. Every experience varied. This is just one of many, but this time it’s mine and I’d like to share it.

A routine men’s health check followed by a colonoscopy chaser triggered a whirlwind that changed our lives forever. In a post-anaesthetic haze I woke to the poker face of my gastroenterologist. “That was quick” I thought. Momentarily forgetting I had been unconscious. But before I had time for the thought to become verbal his poker face lips began to move. “All went well with the procedure, but we did discover a lesion”. Right ... the fog of haze messing with my understanding I asked, “What does that mean”? ‘Cancer’ His one word reply swiftly clearing the anaesthetic haze... Right.​

Shock, disbelief, processing. That’s how it began. Three days later in the surgeon’s office a lower anterior resection was explained to me in in the kind of detail a high school science teacher sets out when the class is to dissect a frog. It was clear, graphic and confronting. The mechanics of a resection with the possibility of a stoma, surgical complications and dysfunctional bowel movement was like a slap across the face with a cold towel. A sobering sting. That’s when the craving for knowledge began.

No random googling – reputable sites only was my mantra – a difficult oath to stick to when your mind is swirling with doubts and questions. Then the beacon in the storm, Bowel Cancer Australia. A whole site dedicated to, as my mate of 30 years put it, bum problems. I was like a thirsty dog in a

wading pool. I read every story and all advice on the website. With a week until my surgery a phone appointment with the Bowel Care Nutritionist Janet, set me on a path that for me, has been revolutionary. Janet’s pre-op dietary advice and post op consultations, which I followed to the letter, spoke to my bowels. Over the next weeks there were a lot of conversations with my bowels. Like the lunar cycles followed by the first Australians every poop was charted and analysed for greater meaning. Immediately post-surgery the proximity of a toilet was my highest priority, together with sudocream and a spare pair of undies. But following the Bowel Cancer Australia low fibre diet wrangled my bowel into shape. Not overnight, but in a matter of weeks rather than months. An accompanying food diary provided accurate insight into what blocked the bowel and what stimulated a “poonami”. For me dairy was an instant race for the toilet. Then there was exercise - a buddy companion to nutrition. A 25% loss in muscle mass and strength had me walking whenever able, and on the weights (limited to 5KG post-surgery) as much as possible. I’d gone from pumping iron to pumping tin, but even the limited exercise regime increased my mobility exponentially. The combo of diet and exercise saw me released from hospital four days earlier than estimated and I was able to commence chemo two weeks ahead of the schedule.

Ah, chemo, or getting on the “juice” as we call it in our house. Initially I viewed it as poison – which is reasonable as it’s a derivative of mustard gas! Then, in the spirit of positivity I reframed it to the elixir of life ... settling more appropriately on The Juice. Though I often visualise the Folfox6 chemical cocktail as Dexter (from the TV Series) cruising my bodies blood vessels taking out bad dudes. There’s a lot to say about the chemo road and not enough room here – except that I’ve managed to lead a pretty regular life even on the Juice, working 10 out of the 14 days between my cycles.

My Top Ten Tips:

Seek out legitimate evidence-based info from reputable sources (like Bowel Cancer Australia).

Asks questions – lots of questions.

Cry and laugh as much as you want!

Access the many resources available – including Bowel Care Nutritionists and Bowel Care Nurses.

Accept the days and the symptoms will vary.

Good nutrition and exercise.

Listen to your body.

Join the Bowel Cancer Australia Facebook Group – great people great support.

Phone A Friend – try and find a cancer survivor support person you trust.

Speak your truth – don’t be afraid to revaluate your life or seek help or move forward in charge of your destiny as NO ONE except you knows what’s going on in your body or mind.

Funds raised through Dry July 2022 have supported the continuation of The Movement - Wellness Beyond Diagnosis, Bowel Cancer Australia’s nurse moderated and supportive online community for patients, loved ones and carers.

With close to 700 members and counting, the closed Facebook Group features monthly presentations by healthcare professionals from across the care continuum, access to resources, as well as facilitated live chats for members to connect with one another. Moderated by Clinical Nurse Consultant Sally, who also has a lived bowel cancer experience.

What patients are saying:

“I can't believe how amazingly supportive this group has been to me. After my initial diagnosis I was overwhelmed and so incredibly scared. I then found this group and even though I’m still navigating relatively blind, more tests and more waiting for results, I am not so frightened because I KNOW I'm not alone. Our journeys are all unique but there's backup and understanding here.”

“Early on in my journey, I found the Bowel Cancer Australia support network. I reached out to the Bowel Care Nurse in the early days and also the Bowel Care Nutritionist. I was so grateful for their advice, especially in those early days when my head was absolutely spinning. I also found the community Facebook group 'The Movement - Wellness Beyond Diagnosis'. This group has been a wealth of knowledge and support and I cannot recommend them highly enough.

Bowel Cancer Australia is pleased to welcome Australia's first dedicated Bowel Care Oncology Social Worker to our Patient Services team, offering further cancer-focused support to improve the psychosocial wellbeing of people with living with and beyond bowel cancer.

This fantastic new service is made possible thanks to a grant from the Dry July Foundation, and all the much-appreciated Dry July fundraisers and donations received.

“Your psychological and emotional health can have a significant impact on your physical health and ability. Social work therefore looks to holistically address your overall health and wellbeing. I am here to provide another part of the scaffold of support around you, helping to uphold you through your bowel cancer experience.” ~ Victoria, Bowel Care Oncology Social Worker.

People living with or beyond bowel cancer and their loved ones can now access this new service anytime via email or by calling Bowel Cancer Australia's free Helpline on 1800 555 494.

What patients are saying:

“Since surgery I have experienced chronic bowel issues which have isolated me from my community and friends. As I live alone with no family support, I have been extremely grateful to Victoria for her professional support in what has been and continues to be an extremely challenging condition. I cannot speak highly enough of the support she has given me.”

You’ve helped fund the continuation of Bowel Cancer Australia’s Bowel Care Oncology Social Worker service, Online Survivorship Community and Resource Hub (Bowel Care Nurse Moderated Facebook Group) and two additional integrated Bowel Care Nurses.

Bowel Cancer Australia’s integrated Bowel Care Nursing program supports the employment of dedicated part-time Bowel Care Nurses in regional communities across the country. Acting as a key point of contact for bowel cancer patients and their families as they navigate the health system in their local area – providing advice, education, support and direct patient care.

“Bowel cancer is Australia’s second deadliest cancer, but when detected early 99 per cent of cases can be successfully treated. We need to be at the forefront of that treatment, helping ensure clients get the best possible care,” says Sunshine Coast Bowel Care Nurse Kirsty.

On behalf of 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 cancer.

I was officially diagnosed with Stage 4 Rectal cancer in December 2020. This is my second bowel cancer diagnosis; I was also diagnosed with Stage 1 in 2012.

Nothing prepares you for that feeling of being completely overwhelmed with the fear of what is to come. Will I be alive long enough to watch my son grow up? Will I be on chemo for life? Will I ever get to remission?

Cancer during a pandemic adds another level to the treatment. I spent over 50 days in hospital over the past 12 months, mostly alone due to restrictions.

Many times, I thought I couldn’t do it anymore, the treatment was brutal on my body and my mind. I had surgery complications, went into menopause and now have lasting side effects from the treatment.

But I did it! I made it to the other side of treatment. Three surgeries (including bowel resection, ileostomy and reversal, and removal of adrenal gland and ovaries), six weeks of chemo/radiation, 12 rounds of chemotherapy and a bout of shingles later, I am in remission.

When I look back on what my body and mind went through, I still can’t believe I was able to get through it all.

I am so thankful that my amazing surgeon and oncologist were totally invested in not only treating me with the hope of cure, but to try and still give me a great quality of life.

Cancer can be a very lonely experience, especially during a pandemic. I am so thankful to have had the team from Bowel Cancer Australia checking in on me during both my cancer experiences in 2012 and again in 2020/2021. The practical support of a nurse and nutritionist who understand the impacts of treatment on your life and the Peer-to-Peer Support Network which put me in touch with others in similar situations, really helped me feel like I wasn’t alone.

Since my last surgery, things have progressed well. That’s not to say my life is back to normal, but I am here, I am in remission, and I’m going to try and live my life in the present. I’m enjoying time with my family and friends and trying to make the most of everyday. I will not let my cancer define me!