Rachel Bernardo was diagnosed with Stage 3 Bowel Cancer at 38, the deadliest form of cancer and the sixth leading cause of death for young Australians aged 25-44.
Thirty-eight-year-old Deception Bay mum of three girls under ten years, Rachel Bernardo, is a non-smoker with no family history of cancer. So when she presented to doctors with concerns about intermittent cramps and constipation, her symptoms were dismissed as constipation. She wasn't considered a high risk for bowel cancer.
“It's a common misconception that bowel cancer only affects older people. All the young people getting it are healthy and active.”
Twelve months on, Rachel presented at the hospital's emergency department with stomach pain and bloating. Tests revealed she was severely anaemic and had a tumour in her bowel that required surgery. Of the 33 lymph nodes removed, twenty were found to be cancerous. Six months of chemotherapy treatment was needed.
Contending with postoperative complications of cellulitis and paralysis of the bowel, Rachel became debilitated and entirely reliant on her fiancé, Justin, for showering, dressing and walking.
"It was very confronting," Rachel shared, explaining that the partners of cancer patients also suffer a great deal of emotional stress. Still, she believes the experience has strengthened their relationship. "He is my rock," she says. "We have actually become stronger together."
It is estimated to take three months for Rachel's bowel to heal after surgery. During this time, she is not covered by insurance to drive a vehicle and cannot carry heavy items such as shopping bags, a loaded laundry basket, a large carton of milk or her youngest child.
Having such a large portion of her bowel removed also changes the way Rachel eats. "I can no longer tolerate eating meat. It is just not worth it," she says. "I cook one meal for the family, and I eat vegetarian."
Rachel explained how the chemotherapy drugs remain in her body for up to a week after each session. During this time, minimal amounts of the drug may be released from the body through saliva, sweat and other bodily fluids. A compromised immune system means safety measures often must be taken with her children during the week of chemotherapy, including separating her laundry, taking extra care with toileting, effectively cleaning up any spills and limiting kissing. So when chemotherapy treatment commenced at Christmas last year, precautions were taken to ensure that celebrating with her children and their friends would be possible.
On top of the extreme exhaustion, Rachel felt the side effects of chemotherapy after the first session. "I felt tired, I was losing hair, and I had blisters on my fingertips…and extreme sensitivity to the cold, to the point that opening the refrigerator door and being exposed to the cold was painful."
Her concentration and memory have also been affected. Doctors advised Rachel to take leave from her job in economic development until treatment is complete considering the cumulative effect of the intensive chemotherapy treatment. This placed a financial burden on the family.
Some of Rachel's most emotionally challenging days are when the expected chemotherapy session is postponed, which usually happens if her blood levels are not ideal for treatment. "I organise care for the kids and the home, and I am prepared mentally and then, it doesn't go ahead," she said.
Thankful for the support of work colleagues, the children's school, her Mum and Mother-in-law, Rachel says battling cancer when you have young children is difficult. Initially, Rachel and Justin tried to shield their children from the news of her illness. When their eldest daughter started asking questions, Rachel realised that the more they spoke to their daughter about it, the more she felt included. "Now Bella knows if she has any questions, she can ask Mummy. The younger two [daughters] just know Mum is not well."
Rachel has found that people overwhelmingly support her being open about her experience. Given that more young people are being diagnosed with bowel cancer each year, Rachel advocates for updating guidelines to recommend screening from age 45 rather than 50 years. She says having these conversations and advocacy may have helped her get tested and diagnosed earlier. She adds that while screening tests are available for purchase at the chemist or online, anyone with concerns should speak with their Doctor.
Despite her ordeal, Rachel remains optimistic, insisting she has discovered a more significant life purpose: to create awareness of bowel cancer and the inequities in funding for treatment and care.
According to Bowel Cancer Australia, patients with Bowel Cancer do not receive the same level of support as other common cancers. They have experienced some of the longest waits for access to new treatments. Rachel advocates closing the care gap, citing the lack of funding for specialist bowel cancer nurses attending to patients younger than 50 years fighting bowel cancer as one example.
Bowel cancer is still a taboo subject, says Rachel. "No one wants to talk about poo." Thus, her crucial message is, "Listen to your body and get checked."
Rachel's go fund me page
Follow Rachel on instagram @Bowelmumma