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Charlotte’s story – My experience with Acute Myeloid Leukaemia and how the haematology team saved my life

By July 7, 2022 August 2nd, 2022 No Comments

In April 2019, 32-year-old Charlotte was diagnosed with myelodysplastic syndrome (MDS) after a routine blood test. Myelodysplastic syndromes are a group of disorders caused by blood cells that are poorly formed. Charlotte had been experiencing light-headedness and thought that she might have been anaemic. When the results of her blood test came back showing concerning numbers, she was told she needed further tests and was referred to the haematology department at Royal North Shore Hospital.

Charlotte said, “They initially told me I should have a bone marrow biopsy which sounded like overkill and a bit ridiculous because I was feeling pretty healthy.”

In her follow up appointment, Charlotte was told that her blood results showed she would likely get leukaemia within the next five years.

Charlotte in hospital

“I was shocked to hear that it was almost inevitable that I would get cancer – this is a really scary thing to be told.”

Doctors told Charlotte she had a choice between a bone marrow transplant or monthly blood tests to stay on top of her condition. After considering her options, Charlotte felt that the bone marrow transplant would be too high risk and instead opted for the monthly blood tests.

Charlotte was diagnosed with Acute Myeloid Leukaemia in April 2020, and was told she needed a stem cell transplant to save her life. Charlotte’s siblings were tested to see if their bone marrow was a match for Charlotte but unfortunately, they weren’t. In September 2020, they found a donor and she received the transplant.

Charlotte believes that the care she received from the staff at Royal North Shore Hospital was second to none.

“The nurses are unbelievable, all amazing and kind and truly special. And I was lucky enough to get a specialist who showed so much empathy for what I was going through. His name was Will Stevenson and he has been phenomenal.”

Being cared for by Dr Stevenson and his team, Charlotte says she didn’t feel like another number in the system but rather someone that mattered.
Charlotte described the clinical nurse consultant, Cassandra, as being ‘the greatest presence’ throughout her time at Royal North Shore Hospital. Charlotte said that Cassandra’s coordination and organisation made such a big difference to her treatment.

Charlotte said, “She breezed into my room and took charge, saying ‘you’re under my care now and I will be here for you’ and she really was.”

Due to COVID-19 restrictions, Charlotte was only allowed one visitor so her chosen person was her fiancé Jon. The drugs she was on made it hard for her to take in all the information so she was grateful to have had Jon there.

“When I moved into the hospital, Jon moved in with my parents. They cared for him while he cared for me.” 

Charlotte said, “It’s not just you that gets diagnosed – it’s your whole family and everyone that loves you.”

Charlotte and Jon on the beach with dogs Rocket and Dash

Recently married, Charlotte and Jon enjoyed a honeymoon in Byron Bay in early 2022 and are planning a trip to Fiji later in the year. Charlotte is now headed to long-term follow up appointments that are three months apart.

Since her wedding, Charlotte has been working in an admin role and enjoying walks along the beach everyday with Jon and their dogs Rocket and Dash.

“I wouldn’t be here without the team at Royal North Shore Hospital and with every new advancement there’s one more person that can be helped.”

“The more funding we can get for this department, the more of us can survive and that’s pretty special.”

To learn more about the Royal North Shore Hospital FACT accreditation project, please click here. 

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