Navigating the Invisible Cancer Load

Image © fizkes/ Shutterstock

Pure Health Hub chats with Sally-Anne Kriel – author, mum, nurse, and women’s health advocate – about her own experience with bowel cancer and how she’s helping other women navigate the invisible cancer load.

In 2018, a single sentence changed 38-year-old Sally-Anne Kriel’s life forever.

“I’m sorry, you have cancer”.  After acting on some on-going abdominal pain and cramping, the wife, nurse, daughter, sister, friend, and mother of two little boys, became one of the 15,206 Australians who are diagnosed each year with bowel cancer and amongst the 10% of Australians who are diagnosed with bowel cancer under the age of 50 .

Sally-Anne Kriel

When bowel cancer is caught early, it has an over 90% chance of being treated successfully and while Sally-Anne was extremely lucky, having acted early on her symptoms,  which could easily have been ignored and put down to ‘food intolerances, IBS or PMS, doctors were able to operate and avoid more intensive treatments.

But despite having ‘only an operation’ – a surgical resection to remove a third of the bowel – Sally-Anne was thrown many challenges throughout her 12-month recovery, with serious medication side-effects, ongoing diarreah, nausea, dizziness, insomnia, weight-loss, muscle wasting, and fatigue.  Not to mention making three trips back to hospital, one in an ambulance, in the first three months of her recovery.  All whilst experiencing the mindset struggle of a lifetime.

The Invisible Cancer Load

With 20 years of working in health care and nursing experience behind her before her diagnosis, Sally-Anne was less shocked by her symptoms than the invisible load that she discovered came with cancer.

“What surprised me the most was the lack of information, guidance and support for parents with younger children who have cancer,” says Sally-Anne, who was also taken aback by the lack of information about the longer-term and less-acute side effects of cancer.

It’s what Sally describes as the ‘invisible cancer load’.

“The challenges of parenting through illness, body image and self-esteem issues, carer strain, relationship strain, friendship breakdown, memory impairment (cancer fog), intimacy issues, financial strain, complexities with returning to work, nutrition myth busting, treatment related early menopause, fertility issues, exercise prioritising and “scanxiety” (anxiety and fear around follow-up tests… in case the cancer is back) are side-effects that are, in many ways, invisible.

Those around us can’t see them and often our health professionals can’t see them either unless we tell them, or they specifically ask,” explains Sally-Anne.

While Sally-Anne gives full credit to her exceptional medical care, she was still left with many challenges and unanswered questions.

“There was no guidebook with tips to parent young children when I came out of hospital or when my energy was low. I was incredibly surprised at how busy it was to be a patient: by the time I dropped the boys to childcare, had a nap and one or two appointments, it was time for daycare pick-up. And there wasn’t any carer support available for my husband, because I was too young and my condition was temporary “

It was proved eye-opening just how easy it was for people to focus on Sally-Anne and not her husband, who needed to do the lion’s share around the house ––cooking, tidying, playing chauffeur to an 18-month-old and 3-year-old, and caring for Sally-Anne whilst holding down a job and working through his own fears for his wife and her diagnosis.

“It’s important to remember that the whole family unit is impacted by cancer,” she adds.

The long road to recovery

Navigating illness and recovery while caring for two young boys was a particular challenge.

“I had to ask for help, cut myself a lot of slack, delegate where I could, accept that it was okay for a couple of hours of TV and the same healthy frozen meal a couple of times in the same week – if that was needed to see us through. I realised that no amount of self-loathing and mum guilt was going to make me better or make things easier for me at home, says Sally-Anne.

“I had an amazing group of women who would deliver us meals and day care snacks. My amazing colleagues all chipped in together which allowed us to get some yard maintenance to take some of the load off my husband. Some of my husband’s colleagues brought us a voucher for our favourite sushi restaurant. They were all absolute life savers. More, I’m sure than they will ever know.”

Sally-Anne found that while modern medicine has an understandably strong focus on physical recovery, there’s limited emphasis on emotional recovery and mindset. For that she turned to holistic support during her recovery using acupuncture for symptom management and the services of an oncology naturopath to support her throughout her treatment.

A Cancer diagnosis can bring with it longer-term challenges too, which vary for everyone. Financial strain can be long term, depending on out-of-pocket medical fees and loss of income. Self-esteem and body image issues can impact on intimacy, negative self-talk.  And, of course, there is grief related to the loss of a worry-free life.

“Once you have had a threat to your mortality you have a deep appreciation for the impermanence of life,” explains Sally-Anne.

Taking pause

But Sally-Anne not only learned how to manage the parent/patient role as a mum to two toddlers, and the many ongoing challenges of her diagnosis and recovery, she also underwent an incredible personal transformation.

“I became immersed in self-development and began a daily practice of journal writing, daily gratitude and I had affirmations written on posters all over my house. On my toughest days I would lay on the lounge and listen to inspirational TED talks.”

Her diagnosis offered her a chance to pause, reflect and pivot in life.

“At the time of my diagnosis I was just getting through the day to day. Life was challenging with two little people, a career and sleep deprivation for the best part of three years. I had forgotten about joy. I was often in a rush and always trying to be a better person and just wanted to get to the next thing. Cancer was a forced slow down and a chance to see what I wanted in life, what was really important.”

Sharing her knowledge 

The gratitude she has for the second chance she was given and the lessons her experience with cancer taught her led Sally-Anne to write a book so other women don’t have to go through the experience alone.  In  A Woman’s Guide to Navigate the Invisible Cancer Loadshe unpacks her personal experience through recovery and shares the amazing wisdom of many women in the cancer community, as well as key advice from experts and professionals.

Packed with helpful resources for women, their carers and support teams, as well as health professionals, it is the book Sally-Anne wishes she been given when she first received her diagnosis.

In the book, Sally-Anne has covered the lesser known and longer-term side effects of cancer that can really affect a woman’s quality of life, but that patients don’t often hear about during recovery.

“I want to normalise ’real talk’ about cancer and let women know that it is okay to experience challenges with issues like self-esteem, relationship strain and early menopause symptoms,” she says.

“If I can make the cancer journey just a little easier for women, I will be hugely humbled.”

Inspiration and insight 

During her journey Sally-Anne would reflect on her recovery and wonder what she was doing wrong and finding it so hard.

“I was frustrated that there was so much that I didn’t know and the resources I was accessing seemed to be hard to find, buried in multiple links or non-existent. I also found that I needed hope. I needed to hear stories about other women just like me – younger mum, professional, cancer – who were now doing great.”

But Sally-Anne couldn’t find those stories. Instead the stories of women her age with young children who were in their final months of life or who had just passed away were really taking their toll. Cancer treatment can be scientific and clinical, so hearing positive stories and helpful and inspiring advice from people who have personal, lived experience is priceless.

“When someone knows what it is like to experience the grief, fear, sadness and challenges of cancer, it’s easier to share your own story. Sometimes people find it helpful to speak with someone who isn’t their partner or friend. Often because we don’t want to be a burden or worry others with our fear, but also because sometimes we can feel that others who have been through a similar experience can hear our concerns without judgment.”

The result is the Awakened Mumma Wellness, an inspirational resource hub launched by Sally-Anne that calls not only on her insights as a nurse and a bowel cancer patient, but generous information and advice provided by everyone from financial experts to medical oncologists. All targeted to benefiting women through their treatment and beyond.

Even with all her action and advocacy for women thus far, Sally-Anne has more on her mind. As bowel cancer is Australia’s second deadliest cancer, Sally Anne’s goal is to see specialist Bowel Care Nurses funded in Australia: like models used by the McGrath Breast Care Nurses, Prostate Cancer Nurses, Leukaemia Nurses and Lung Cancer Nurses. She believes it will provide a huge opportunity to improve the health of Australians, just like her.

This article provides general information only, and does not constitute health or medical advice. If you have any concerns regarding your health, seek immediate medical attention.