Why you should never ignore hip pain: The feeling hit me like a bolt of lightning, but I brushed it aside because I was only 29. Then the doctor gave me the worst possible news…

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

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

When the mother of two finally went to 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 the cancer the first time, but two years after she was given a clean bill of health, the disease spread to her lungs.

Her long journey When she regained her health, Kaela became so unwell that she lost weight to just 43 kg (6 and 11 lbs) and “literally felt the life leaving my body.”

Kaela, an emergency room nurse from Canberra, is currently diagnosed with stage four metastatic disease and will need to undergo oral chemotherapy in the near future.

‘I used to be in the army, so I thought I had bad hips when the pain started. But I also exercised five days a week, so I was very healthy,” she says.

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

She initially thought it was a muscle tear, but made an appointment with the doctor to be 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 – it’s so rare. It only affects one percent of cancers in adults and ten percent of cancers in children.”

Sarcoma is a form of cancer that can occur in different parts of the body and starts in the connective tissues, such as bones and cartilage.

Scientists don’t know exactly what causes most soft tissue sarcomas, but they have discovered that a number of 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 is usually a late-stage diagnosis. It does not present itself as cancer; it feels like a soft tissue injury, and that’s what I mistook it for,” Kaela says.

Kaela underwent a tumor resection, where surgeons cut the cancer from her right thigh, followed by three months of intensive chemotherapy and two months of radiotherapy.

Patients diagnosed with sarcoma must be 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 failed round of chemotherapy and then underwent three surgeries to remove the tumors from her lungs.

Kaela was then given oral chemotherapy, which she continues to use to this day.

“If I didn’t have my children, I would never have fought as hard as I did,” she adds.

“It was grueling 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 that I would be without them.

‘I had to make sure I was present enough to be their mother while I fought for my life, but some days I would sleep for 15 hours straight because of the chemotherapy. It was very traumatic for my children to see me so ill.”

Kaela had her husband’s support, but the couple had no family nearby while she underwent chemotherapy, which made things difficult.

The cancer-stricken mother ended up using all her work leave due to the lack of government support during her treatment.

“Having a rare form of cancer is so isolating,” she explains.

‘You have to use your (annual) leave yourself, look up the services yourself and simply do all the administration yourself. There aren’t even any support groups online.”

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

She still works full-time as an emergency room nurse because she can’t afford to quit her job.

‘It’s cruel, but I love my job so much. It brings some normalcy to my life, where I focus on everyone else’s problems but my own,” she says.

‘But it’s not easy: there are days I literally walk out the door and throw up and have to medicate myself to go to work.

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

As a healthcare provider, Kaela knew how to ask the right questions to get the best possible care.

But she also knew from experience that there was a good chance she would die.

‘I would be terrified if I were someone without a medical background. I’m lucky that I know what to advocate for, because otherwise I would be dead,” she tells me.

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

“I only live because I knew I could ask questions and push and get a second opinion.”

Kaela says it’s “terrifying” to think that there are cancer patients who don’t know how to stand up for themselves.

She describes the cancer’s return in July 2022 as “totally devastating” because she had been through the ordeal before and wasn’t sure how she would get out of it.

‘I’m a bit in limbo now because sarcoma is so rare. “Once you get to the stage I’m at with relapse, doctors don’t expect great results,” she says.

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

Kaela emphasizes the importance of funding being allocated to the Sarcoma Society of Australia and New Zealand for his life-saving research.

“Without the government funding sarcoma research, we will literally die,” she says. ‘Rare forms of cancer deserve to be recognised.’

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

‘I’ve said yes to many more things now, because I realize that the time you have with the people you love is so important. None of us know when that will end or be taken away from us.”