How cancer changed everything

Monique Bareham was 37-years-old when she found a lump on her breast. She wasn’t doing a breast self-exam, and she had no family history of breast cancer, but some instinct pushed her to get it checked straight away. It was lucky she did. In a whirlwind few days, Monique had a mammogram, a biopsy, and a breast cancer diagnosis.

From then on, Monique was on what she calls the ‘cancer train.’ Doctors took over. They made decisions that led to surgeries, chemotherapy, radiotherapy, hormone therapies, and other drugs. Then it all ended. She was cancer-free, and it was time to return to life as normal—but that’s easier said than done.

Before cancer, Monique had been a busy person with a management position in a government department and hopes for a family. When her treatment ended, she expected to take a couple of months to recover (if that) and then get back to work. When that didn’t happen, she thought something was very wrong with her.

Monique soon discovered that she couldn’t do her job anymore. She struggled with ‘chemo brain,’ fatigue, and other side effects. She would forget words and lose track of her thoughts. Then she was diagnosed with lymphoedema. Her employer kept saying, ‘You need to tell us what you need.’ Monique didn’t know what she needed. She was in a situation she never expected and didn’t understand. Soon enough, she was also facing a tough financial situation made tougher by the realisation that she wouldn’t be returning to work.

‘I lost my sense of self and purpose,’ Monique explains. It was like she’d been shoved off the cancer train and stranded at an unknown station, with no idea of which direction to take. Later, she would discover that many people struggle with the same issues. She would learn about cancer survivorship. But at the time, she felt very alone.

I was in a very dark and confused place, but then I found myself in a room with survivors for the first time. I walked out of there not feeling so isolated.

Cancer survivorship was a brand-new term when Monique finished her treatment. She’d heard the phrase floating around the Flinders Centre for Innovation in Cancer, which founded the inaugural Australian Cancer Survivorship Conference in Adelaide in 2013. That first conference fell on Monique’s birthday, and she attended as a present to herself. The experience was eye-opening. What was happening to her was not a unique experience. There were—and still are—huge gaps and blind spots after cancer where vulnerable people are effectively abandoned without the help they need. Some survivors need ongoing treatment for side effects, conditions or disability arising from cancer or cancer treatment. Some need support in returning to work. Some need financial aid or advice. Some need ongoing care for the mental, psychological or emotional consequences of what they’ve experienced.

After that first conference, Monique knew what she needed to do. She was going to improve cancer survivorship for herself, and for the people who would come after her.

The first hurdle: returning to work

Monique started by volunteering for a ‘Returning to Work’ project at the Flinders Centre for Innovation in Cancer. Her role was as a consumer advisor. She spoke with GPs about the barriers in returning to work until, collectively, they uncovered new insights and understanding into the issues affecting people after cancer. They collated their findings and recommendations in a report calling for change to government policy and the health sector. As a former government manager, Monique knew the value of this kind of work. Governments respond to reports like this one. She’d seen it happen. However, she also noticed an unexpected benefit: the value for her, personally. The project gave Monique a sense of self-worth, confidence and understanding that she’d lost since being unable to return to work.

Slipping through the gaps with cancer-related lymphoedema

Around 20% of people with cancer will develop lymphoedema after surgery or radiotherapy—as Monique did. The condition causes swelling in the limbs. In many people, it is mild and manageable. However, there is exaggerated fear around lymphoedema. Some research suggests that, for cancer survivors, the fear of lymphoedema developing is higher than the fear of cancer recurrence.

The Lymphoedema Support Group of South Australia is attempting to address the fear and misinformation around the condition and, as the president, Monique is a leading voice in the lymphoedema community. She is the one who takes calls from members and people recently diagnosed with lymphoedema or those at high risk of developing the condition. She also runs the in-person support group meetings. Together, they talk about how to reduce your risk of developing lymphoedema, the importance of early intervention, and the types of treatments available. They also provide peer support, lending their lived experience to help others to manage distress associated with lymphoedema and surrounding issues—like having to wear a publicly visible compression garment in summer when you want to be wearing short sleeves, or how to afford your compression garments in the first place. Many people with lymphoedema need to wear a compression garment on the affected limb daily. South Australia is the only Australian state where there are no subsidies for compression garments. It’s oversights like this one that makes life that little bit harder for people who have gone through cancer treatments and are adjusting to a new norm.

Letting go and finding a new way forward

Monique still lists cancer-related infertility as one of her passion areas. Unfortunately, some cancers and cancer treatments can cause infertility. When Monique was diagnosed, she was lucky to have a doctor who took her plans for parenthood into consideration; it wasn’t common at the time. She went through one round of IVF, and it gave her a powerful sense of hope. It’s something she’d like to be available to everyone.

However, Monique has had to step back. Her health and financial problems have meant that she’s unable to have children, and the grief around this issue is still raw. Many cancer survivorship issues need improvement. Monique has found purpose in focusing on those where she can be the most use.

I was able to come through a traumatic experience and then impart that lived experience in a meaningful way, which helped in my recovery. I’m thankful to Flinders Cancer Research for that.