Journalist Elle Halliwell didn’t expect a visit to her family doctor to be anything but ordinary when she went in to collect a doctor’s note in April 2016.
The 37-year-old who lives in Sydney‘s Bondi Beach with her husband Nick Biasotto, was only over for a back-to-work notation because she had been out with a stomach bug for a few days.
As she had done for a number of years before, Elle also took a script to organize her annual blood test. She had discussed the idea of starting a family with Nick and wanted to check that her levels were within a normal range to start trying.
‘I mainly wanted to check my folate levels. The results came back and said I had high platelets, which is not uncommon if you’ve had gastro, she told FEMAIL.
‘My doctor wasn’t worried, but we ordered another test anyway. The second test showed that the platelets were even higher, so he asked for a specialist to take a look.
“Other than feeling a little bit tired as I had put in work, nothing but that blood test would have prepared me for what happened next.”
Elle Halliwell (pictured) didn’t expect a visit to her GP to be anything but ordinary when she went in for a doctor’s note in April 2016, but it changed her life forever
The 37-year-old, who lives in Sydney’s Bondi Beach with her husband Nick Biasotto (pictured), was only over for a back-to-work notation at the GP because she had been out with a stomach bug for a few . days – but she ordered a blood test to kill two birds with one stone
Elle had to wait five weeks for an appointment with the specialist and unfortunately a further three weeks for the results of further tests. But her results for this third round of testing came earlier than expected.
‘The receptionist who called me [on a Thursday] Said I should come in on Monday. She said I needed to bring a loved one to discuss the results,’ Elle explained.
She added, for clarity: ‘They don’t ask you to bring in a loved one unless you’re dying’.
Having long since forgotten about the stomach, Elle got back in touch with her doctor to try and get more information. Four days was a long time to wait for the worst news of your life.
It was then that she heard the abbreviation CML for the first time.
‘I have chronic myeloid leukemia. It affects your blood and bone marrow. It is most often diagnosed in men over the age of 60. Not women my age,’ she said.
Elle described the ‘horrifying’ phone call she received from the specialist’s office: ‘They don’t ask you to bring a loved one in unless you’re dying’
What is chronic myeloid leukemia?
Chronic myeloid leukemia (CML) is a type of cancer that affects the blood and bone marrow.
In CML, the bone marrow produces too many white blood cells, called granulocytes.
These cells (sometimes called blasts or leukemic blasts) gradually crowd the bone marrow and interfere with normal blood cell production.
They also run out of the bone marrow and circulate around the body in the bloodstream.
Because they are not fully mature, they are unable to work properly to fight infections.
Over time, a lack of red blood cells and platelets can cause anemia, bleeding, and bruising.
Two days later and an extra pregnancy test in hand, Elle discovered she was pregnant.
“In 48 hours I had found out the best and worst news you can hear in a lifetime,” she said.
It’s common for CML patients to have no symptoms at all in the early stages – which is when Elle was diagnosed – but she believes some of the ‘fatigue’ she put down to being career driven may have been the cancer .
When her Monday specialist appointment rolled around, Elle was somewhat prepared for the news. But not for the fact that her new doctor encouraged her to terminate the pregnancy.
Her best course of action was to start an oral chemotherapy drug called a TKI right away, but it is not known what the effects on an unborn child would be.
So Elle, faced with an impossible choice, decided to wait. She waited nine months for her son Tor Felix to be born.
“I had two weeks of checkups and tests to see how I was progressing,” she said of her chemo-free pregnancy.
Two days later and an extra pregnancy test in hand, Elle discovered she was pregnant (pictured). Doctors urged her to abort the baby, but she decided against it
What are the symptoms?
Elle believes that the fatigue and ‘feeling of wear and tear’ she experienced before her diagnosis may have been due to the cancer and not her work.
Because CML develops slowly, many people have no symptoms (especially in the early stages) and the disease is picked up on a routine blood test.
As the disease progresses, symptoms arise from the increasing number of abnormal blood cells in the bone marrow and blood, and the decreasing number of normal blood cells. Possible symptoms may include:
*anemia, due to a lack of red blood cells and causing persistent fatigue, dizziness, paleness or shortness of breath when physically active
* increased or unexplained bleeding or bruising due to a very low platelet count
* Frequent or repeated infections and slow healing due to lack of normal white blood cells
* pain or discomfort under the ribs on the left side due to an enlarged spleen
* excessive sweating or unintentional weight loss.
‘It is a disease that does not normally affect women of childbearing age. There weren’t many other cases like mine. We didn’t know how it had progressed or how long I had had it.
‘There was a treatment that had been used until these TKIs. It wasn’t perfect, but it didn’t cross the placenta. It involved getting an injection once a week in the third trimester. So that’s what I did’.
Elle was induced a month before she reached full term because her leukemia marker levels – the amount of cancer in her blood – had risen.
After Tor was born in December, Elle decided to push her TKIs for another five weeks so she could breastfeed her newborn son. Then the real battle began.
Elle decided on a different treatment plan while she was pregnant to avoid harming her baby
After Tor was born in December, Elle decided to push her TKIs for another five weeks so she could breastfeed her newborn son
‘The five weeks gave me time to settle into motherhood. It gave me peace of mind and luckily my levels had come back down so the doctors agreed,” she said.
‘The five weeks gave me time to settle into motherhood. It gave me peace of mind and luckily my levels had come down again so the doctors agreed,’ she said.
Tor will be in his first year at school next year.
The past six years have seen Elle go into remission and fall out of it again. She has tried to come off her daily medication when her blood has shown no signs of cancer, only for it to return and treatment to resume.
‘I thought I would be one of the 50 per cent of people who could eventually stop treatment and stay in remission, but unfortunately it doesn’t look promising for me. I see a return of the cancer cells and I now get blood tests every two weeks to monitor the development,’ she wrote on Instagram in 2020.
Tor Felix (left) will be in his first year at school next year (pictured with Elle)
Elle shares what helped during her first diagnosis:
1. Be sure to schedule a blood test once a year to check your levels and make sure they are ‘normal’ for you.
2. If you want to receive bad news from a doctor, be sure to record it on your smartphone. You won’t remember half the things they say, so it’s better to listen to it later when the shock wears off.
3. Use the Cancer Council’s 13 11 20 Information and support line for extra knowledge rather than random sites you may find yourself on Google.
‘I am surprised to feel a deep sense of shame about this. Shame because I feel like I have to do something to let my body down, despite trying to live as healthy a life as I can.’
While her CML diagnosis has had its ‘ups and downs’, the average life expectancy for Australians with this bone cancer was three to five years before the creation of the oral chemotherapy drug she relies on.
Elle is already six.
‘I feel so lucky that a treatment was developed in the late 1990s. Unfortunately, I have to be on it for the foreseeable future, she said.
‘I am grateful that this medicine is subsidized in Australia. I take two pills twice a day and have to fast before and after.
While her CML diagnosis has had its ‘ups and downs’ before the creation of the oral chemotherapy drug she relies on, the average life expectancy for Australians with this bone cancer was three to five years
“It affects my quality of life to some degree, but it’s definitely better than the alternative.”
At the time of publication in 2022, Elle has no detectable blood cancer cells in her body.
From October 13, a bright yellow phone box will be located in Sydney’s QVB Forecourt to raise awareness of Cancer Council NSW’s Here For Life campaigna campaign highlighting their vital 13 11 20 information and support service.
The number is staffed by healthcare professionals who can answer questions, offer support or refer you to other vital cancer services.