Sue McConaghey shares her story during Blood Cancer Awareness Month

September is Blood Cancer Awareness Month and Sue wants to share her story to ensure Australians don't dismiss symptoms which could easily be taken for granted.

The 67-year-old resident of Berkeley Vale on the NSW Central Coast was diagnosed with amyloidosis in February 2020, having first started experiencing symptoms the previous year.

Sue said in early 2020, she started experiencing feelings of shortness of breath, and would sometimes feel light-headed when she stood up too quickly.

"I wasn't overly perturbed. I thought it could have been the humidity, it was a hot summer," she said.

She started experiencing other symptoms such as tiredness and grumpiness which she could easily have attributed to her age and stage of life. The most inexplicable symptom was swelling in her legs.

"I wasn't experiencing any pain, but I was surprised by it. As the year went on I was more and more uncomfortable. I'd taken to wearing cheap compression socks."

"The doctor suggested I lose some weight. I took it on the chin that I was probably carrying a bit of extra weight, but didn't think it was causing swelling between my knees and ankles."

She went to see doctors on numerous occasions throughout the year, and through perseverance was finally able to convince her GP to order some blood tests.

When the blood tests came back, she was referred to a kidney specialist, who was immediately concerned enough to order a biopsy.

For a number of years Sue had worked as a psychologist at the Central Coast Cancer Centre and said her work experience had somewhat prepared her for the diagnosis.

"Shock isn't really the word, I was surprised.

"Part of my personal journey was (learning that) sooner or later, something will happen and it will be a surprise."

She said in many ways the diagnosis was helpful.

"There was some relief, I actually had a way of understanding what was going on.

"But there was also some real sadness at this point. I thought this was going to be great challenge, facing a crisis of this kind."

Her treatment regimen was indeed challenging. She was immediately referred to a haematologist.

After consultation with specialists, she was able to complete a few things she had planned. She and her husband went on a camping trip with her grandchildren, and she attended an art gallery lecture she had signed up for.

After that, it was straight into treatment. Sue underwent a 16-week course of chemotherapy which included self administered chemo pills, once weekly injections at hospital and taking a number of other drugs to help maintain her health.

She was then admitted to hospital where she had a port surgically inserted, followed by a stem cell procedure.

She became very ill throughout the treatment process, particularly during her hospitalisation before and after the stem cell transplant. She lost her hair and a lot of weight due to her loss of appetite.

Sue says she is currently doing very well.

"I'm still living with three monthly haematologist check ups, this could all change on the turn of a coin, but at the moment I feel very well.

"I'm probably doing more exercise and eating better than a lot of people my age."

She urged other seniors to make sure they remained fit and were eating healthy as a healthy lifestyle was one of the first lines of defence when a person did get really sick.

For those experiencing symptoms they can't quite understand, she had a simple message - get a check up, and if symptoms persist, don't be afraid to tell the doctor and request further testing.

"I think a lot of people with blood cancer will have very odd symptoms that don't fit anywhere else. It (often) takes quite a while (to diagnose) due to the oddness of the presentation.

"Just kept bringing it up, (saying) this is not right, this is not right."

Taking place on September 30, the Leukaemia Foundation's Light the Night initiative invites all Australians whose lives have been touched by blood cancers to help shine a light to raise awareness.

The moving ceremony will see friends, family members and loved ones of those who have been diagnosed with blood cancers, as well as patients themselves, lighting lanterns to symbolise hope for a blood cancer free future.

For the third year, Light the Night will be offered virtually, with participants to light lanterns from their backyards, loungerooms and hospital wards. All that is needed to participate is access to a screen and a lantern to light.

The host of this year's ceremony will be Bruce McAvaney, who was diagnosed with Chronic Lymphocytic Leukaemia in 2014.

If you or someone you love is diagnosed with a blood cancer, please contact the Leukaemia Foundation's dedicated blood cancer support line on 1800-620-420 or click here. To register for this year's Light the Night event click here.