For Katrina Richards, a five-year delay in diagnosis was followed by a further wait for access to treatment.

Back in 2010, Katrina's illness started innocently enough – as a burning itch that she thought might be caused by heat or an unknown irritant.

When the skin on her hands began to harden and split, she went to her doctor and embarked on a five-year quest for answers.

Tests initially revealed an allergy to dust, and Katrina, 46, was prescribed steroid cream. When the soles of her feet started to crack and she noticed a strange rash, she was sent to a dermatologist in Tamworth – two hours from her family home in Narrabri.

Passed between doctors who struggled to find a diagnosis, Katrina was prescribed medication that led to her losing her hair, as well as the skin on her neck and chest. With symptoms worsening and still without answers, Katrina was admitted to hospital to find her organs had started to shut down and she'd put on 20kg of fluid in a week.

"I had to give up work because my skin was in such bad shape," she recalls. "I loved my job and my co-workers, and it was really difficult to give that up. I didn't want to leave the house because I felt I looked like a freak – I became a hermit."

During this time of uncertainty, Katrina's relationship with her partner, Steven, was also put under huge pressure, as it moved from an equal partnership to that of patient and carer.

"Our relationship had been 50/50," says Katrina, "but suddenly Steven was having to do the cooking, cleaning, shopping and ironing, plus work and look after kids. It was hard because I was used to working full-time, raising four kids and still having a spotless home, and now I couldn't get out of bed."

In 2012, Katrina was admitted to hospital for twice-daily wet bandaging to try and manage her condition – something that initially soothed her skin. However, the task was then passed to community health, who – in her small country town – only had the capacity to bandage her once a day. This meant Steven had to do the bandaging at night – adding yet more pressure to his workload.

Still with no clear answers after five years of ill health, Katrina continued to visit specialists - undergoing numerous tests and prescribed a variety of medications. She only got answers after a chance meeting with a rheumatologist whose wife had been researching the early stages of the type of blood cancer Katrina was eventually diagnosed with: stage four, subcutaneous T-cell lymphoma.

"When I was diagnosed I was scared," Katrina recalls, "because I thought, 'If I'm at stage four, what hope have I got to make it?' I was also angry and frustrated – I didn't understand how a skin problem could be caused by lymphoma, and I didn't know how pathology had missed it for so long."

With a clear diagnosis now in place, Katrina had to urgently relocate 530 km from the family home to Sydney for treatment.

"It was a huge change for the family, and for me," says Katrina. "For nine months I just wasn't home, and there was no guarantee of me ever coming home. Being away from your family, you feel isolated - you're not part of your family's life, even though you talk to them every day. You feel like your life stops and everyone else's keeps going, because you can't make plans - you don't know what's around the corner."

Katrina’s delay in diagnosis was followed by an agonising six-month wait for a drug she needed but couldn't afford – one that was eventually made available to her on compassionate grounds.

"I used to lie in bed at night and imagine I could feel my body just multiplying these horrible little cancer cells," recalls Katrina. "I'd think, 'This is another day that I haven't had any treatment,' and I'd wonder, 'The longer I wait, is this going to make my outcome less of a chance of a good outcome?

As part of her treatment, Katrina received a stem cells transplant – something that was made more difficult because she is of Indigenous descent, which can make it even more challenging to find a match. Eventually, Katrina achieved remission and was well enough to return to Narrabri. However, the couple still had to make a weekly, 12-hour round trip to hospital in Sydney – sometimes waiting four or five hours to see a doctor before starting the long drive home.

Having now been cancer-free for four years, Katrina feels gratitude for every moment with her family. If the national standards set out in the Leukaemia Foundation’s new Set the Standard campaign had existed when Katrina first attended her GP, Katrina may have been diagnosed sooner and had access to the best possible cancer treatment – something that drives her to advocate for the standards.

"It's about time – it's so needed," she says. "If we had national standards, it would make a huge difference – because some people pass away without a diagnosis. Blood cancer doesn't care what gender you identify as, what race you are or how much money you have – it impacts all walks of life, and everyone has the right to good healthcare."

It took five trips to the emergency room for Jason Wandel to be diagnosed with a blood cancer relapse.

Prior to his initial blood cancer diagnosis in 2019, Elizabeth man Jason led a full and active life. All of that changed, however, when he started to experience extreme lethargy.

"I went to the doctor because I didn't seem to be bouncing back," recalls Jason, "but she was a bit stumped about what it might be. She told me to take it easy for a few weeks."

Eventually, Jason started to look so visibly unwell his boss stepped in and insisted he get blood tests. Before he could do so, however, he experienced a nosebleed that wouldn't stop, and found himself rushed to his local hospital, where he received a diagnosis of blood cancer.

"The hospital didn't treat this kind of cancer," says Jason. "To be well enough to get to a hospital that did, I had to have four blood transfusions – which wouldn't have been necessary had I been diagnosed sooner."

From the very start of his treatment, Jason was driven by thoughts of his daughter. "I was thinking about how much she needs me," he says. "My focus was on getting well for her."

Jason was treated with chemotherapy and quickly went into remission. But in April 2021 he began experiencing chest pain.

"My new GP thought I was having a heart attack and sent me to the local hospital, where they reassured me my heart was in great shape,” says Jason.

“I knew something was wrong, though, as I had pain in that spot before my initial diagnosis. I ended up going to the emergency room at my nearest hospital four times in two weeks. Each time, they checked my heart then sent me away."

Jason says the medical teams dismissed his concerns of a relapse based on bone marrow biopsy results that were five weeks old – results he knew weren't authoritative, since his blood cancer was aggressive and fast-moving.

"I was trying to think of what I could do to make someone listen to me – I knew they were relying on out-of-date results," says Jason. "It was so frustrating, despite me knowing they were otherwise trying their best."

The day after Jason's fourth trip to the emergency room, he spiked a fever so high he had to call an ambulance, and was luckily sent to the farther-away hospital where he was originally diagnosed and treated for blood cancer. Here, he was swiftly told he had relapsed.

Now cancer-free, Jason feels the national standards called for by the Leukaemia Foundation's Set the Standard campaign could've helped him avoid the delays he experienced with each diagnosis.

"If I'd been diagnosed earlier, it would've made things a lot less stressful," he says. "The Set the Standard campaign is brilliant; everyone should have access to the best treatment."

Charlie's blood cancer went undiagnosed for a decade.

National standards for blood cancer diagnosis could have made a difference to the progression of Charlie Nicholson's illness.

Back in 2011 Charlie, of Aldinga Beach, visited her local GP for a general check-up. At the time, she was given the all-clear – only now, after diagnoses of polycythemia vera (PV) and myelofibrosis (both types of blood cancer), has she discovered her blood test results were abnormal even then.

"My current haematologist has looked at those results and seen my numbers were already amiss," says Charlie. "Had I been referred then, I would've probably been diagnosed with PV and treated. Instead it sat in me, undiagnosed, for a decade."

Exhibiting no symptoms and busy raising two young children, Charlie continued to live a full life on the outskirts of Adelaide. Returning to the GP three years ago with gynaecological issues, her blood tests again delivered abnormal results – anomalies that were assumed to be a lab error.

With nothing to tell her otherwise, Charlie put symptoms she was now experiencing – including extreme fatigue, intense headaches and hot flushes – down to a combination of perimenopause and stress. After a fall at work resulted in a haematoma from hip to knee, she headed to the emergency room, only to be sent home without a blood test. When a resulting elbow injury blew up all the way to her armpit, however, a GP was alarmed enough to order complete bloodwork. The resulting "pretty chaotic blood picture", as Charlie puts it, led to a referral for an urgent hospital appointment - a referral that was then lost in the system.

Over the following weeks, Charlie began to actively advocate for herself as she struggled to receive answers. Eventually contacting a private haematologist, she began a process that resulted first in a diagnosis of polycythemia vera - with a life expectancy of less than 20 years - and then, soon after, a confirmed diagnosis of post-polycythemia vera myelofibrosis – an outcome that brings with it a prognosis of five years survival at best.

"The theory is because the PV has been in me for a decade but wasn't treated," says Charlie, "it severely scarred my bone marrow and led to myelofibrosis. Although being told I had PV was a big shock, I had got my head round the fact it wasn't a death sentence. Being told I had myelofibrosis changed that significantly. I'm 44, with a 12-year-old daughter and a 17-year-old son. Never in my life had I planned to not watch them grow up."

Currently taking part in a clinical trial that combines two palliative drugs, Charlie is hoping to become a suitable candidate for a stem-cell transplant. In the meantime, she's focused on appreciating every moment of life with her husband and children.

"Blood cancer has changed me as a person,” she says. "My coffee smells much nicer now, and the sky seems bluer. When you might not have long to live, you appreciate it all so much more. I'm making memories with the kids – being more intentional and not taking people for granted."

The Leukaemia Foundation's Set the Standard campaign is calling for a new set of national standards so no matter who someone is or where they live, they can get the best possible blood cancer treatment and care.

For Charlie, the campaign message is one that resonates. "My story could have looked quite different had I been diagnosed sooner," she says. "They couldn't have changed the end of the journey, but treatment could have slowed it down."

Now working through a bucket list that includes learning to blow glass, mastering a potter's wheel and visiting Uluru, Charlie retains the life-long sense of positivity and determination that drives her to make the most of every day.

"My children have grieved and been angry," she says. "They ask me, 'Why you? You're a good person, you help people.' And I say, 'Why not me?'"

"I'm surprisingly calm and peaceful with it all, and the support and unconditional love of my husband Johnny lifts me through the hard days. Obviously, I have my dark moments and am filled with a deep sadness, but I'm a lot stronger than I gave myself credit for. I've found a resilience I didn't even know I had.”

To add your name to our Set the Standard tally and help people like Charlie, click here