Kaela Graham-Bowman was 29 when she started experiencing a sharp hip pain that stretched down to her knee. She brushed it off as a sports injury, or one of the many aches and pains from her career in the Australian military.

Just 18 months later she was diagnosed with stage-three cancer.

When the mother of two finally went to see a doctor, her diagnosis was almost immediate: she had a rare form of sarcoma that surgeons deemed inoperable.

It took everything Kaela had to fight off the cancer the first time - but two years after being given a clean bill of health, the illness metastasised in her lungs.

Her long journey back to health saw Kaela become so unwell she dropped down to just 43kg (6st and 11lbs) and 'literally felt the life leaving my body'.

Kaela, an emergency department nurse from Canberra, is currently stage-four metastatic and has to take oral chemotherapy for the foreseeable future.

'I used to be in the military, so I just thought I had bad hips when the pain started. But I was also working out five days a week, so I was very healthy,' she tells me.

Her pain turned to panic when a lump popped on her thigh, seemingly overnight.

She thought it was a torn muscle as first, but scheduled an appointment with her general practitioner to make sure. 

'He sent me for an ultrasound, and everything went downhill from there. I was an oncology nurse at the time but I'd never heard of sarcoma before - it's so rare. It only affects one per cent of adult cancers and ten per cent of childhood cancers.'

Sarcoma is a type of cancer that can occur in different parts of the body and begins in the connective tissues, such as bone and cartilage.

Scientists don't know exactly what causes most soft tissue sarcomas, but they have found some genetic factors can make a person more likely to develop them.

'While there is no such thing as "good" cancer, sarcoma is particularly difficult to beat because it's usually a late-stage diagnosis. It doesn't present as cancer; it feels like a soft tissue injury, which is what I mistook it for,' Kaela says.

Kaela underwent a tumour resection, where surgeons cut the cancer out of her right thigh, followed by three months of intense chemotherapy and two months of radiotherapy.

Patients diagnosed with sarcoma have to get scanned every three months and do not officially go into remission for five years.

'Just as I hit the two-year mark, I relapsed,' Kaela says. 'The cancer was in both my lungs.'

She tried another unsuccessful round of chemotherapy and then underwent three surgeries to remove the tumours from her lungs.

Kaela was then put on oral chemotherapy, which she still takes to this day.

'If I didn't have my children, there is no way I would have fought as hard as I did,' she adds.

'It was gruelling, to say the least. My daughter was seven and my son was four at the time and I felt complete despair every time I looked at them.

'The thought of dying didn't scare me; it was knowing I'd be without them.

'I had to make sure I was present enough to be their mum while I was fighting for my life, but some days I was asleep for 15 hours at a time because of the chemotherapy. Seeing me so unwell was very traumatic for my children.'

Kaela had the support of her husband, but the couple did not have any family living nearby while she was undergoing chemotherapy, which made things difficult.

The cancer-stricken mum ended up using all of her work leave because of the lack of support from the government during her treatment.

'Having a rare cancer is so isolating,' she explains.

'You have to use your own [annual] leave, find the services on your own, and just do all of the admin yourself. There aren't even any support groups online.'

Kaela started her own Instagram account, @sorareity, to document her cancer treatment, and has built up an online community of people from around the world affected by sarcoma. 

She is still working full-time as an emergency department nurse because she cannot afford to quit her job.

'It's brutal but I love my job so much. It provides some normality to my life, focusing on everyone else's problems except my own,' she says.

'But it's not easy - there are some days I walk out the door literally vomiting and I have to medicate myself to go to work.

'Other days I'm fine. You just don't know how you're going to feel.'

Being a healthcare professional, Kaela knew the right questions to ask to get the best care possible.

But she also knew from experience that there was a strong possibility she could die.

'I'd be absolutely terrified if I were someone without a background in medicine. I'm lucky I know what to advocate for because I'd be dead otherwise,' she tells me.

'The doctors told me I was inoperable when I relapsed, but I pushed and fought for more surgeries they initially said I couldn't have.

'I'm only alive because I knew I could ask questions and push and get a second opinion.'

Kaela says it's 'terrifying' to think there are cancer patients out there who do not know how to advocate for themselves.

She describes her cancer coming back in July 2022 as 'totally devastating' because she had been through the ordeal before and wasn't sure how she'd make it out again.

'I'm kind of in limbo now because sarcoma is so rare. Once you get to the stage I'm at with relapsing, doctors don't expect great outcomes,' she says.

'But because of my advocacy for myself and having the surgeries no one thought was possible, I'm in a space where I just have to wait and watch.'

Kaela emphasises the importance of funding being allocated to the Australia and New Zealand Sarcoma Association because of its life-saving research.

'Without the government funding sarcoma research, we're literally dying,' she says. 'Rare cancers deserve to be recognised.'

She is now focused on making as many memories as possible with her family.

'I've been saying "yes" to a lot more things now because I'm mindful that the time you have with the people you love is so important. None of us know when that's going to end or be taken away from us.'