‘I figured I was just exhausted and rundown:’
Sarah’s story was written by journalist Aletha Wilkinson. The MPN AA thanks Aletha and Sarah for permission to share Sarah’s story. 

When Sarah first noticed she was struggling to keep up with her busy life she put it down to ordinary ‘mum fatigue’.  “I figured I was just exhausted and rundown.  I’m getting older, and it was the early days of COVID, and I was running a business and very worried about how that would survive all the lockdowns, and I had my small daughter home from childcare.” But then, she started to notice a few things that didn’t quite add up. “There was a series of really bizarre symptoms that together made me realise something was wrong,” she explains. Sarah noticed she was starting to have a twitch in one of her eyes, as well as severe migraines that led to occasional vision loss. “I was experiencing these terrible migraines,” she says. “Extreme light sensitivity, to the point of having to wear sunglasses inside.  “I was getting bone pain as well, and just this deep, deep exhaustion. It’s not like, ‘Oh, I’m tired’. It’s like, you literally cannot crawl into bed. True fatigue.”

Scary speech loss

It was when Sarah realised she was having trouble finding her words that the alarm bells really started to ring.  “I’ve always had a super, super sharp mind, and yet I started to find myself getting lost for words all the time,” she explains. “So that was one of the first things that really alerted me that there was something not right. I thought possibly I’d had a stroke. “I now know it’s called ‘brain fog’, and it’s associated with blood cancer.” That was the frightening diagnosis Sarah eventually received – after months of begging doctors and specialists to keep investigating.

Even when Sarah initially tried to research her seemingly disparate symptoms, she repeatedly came up empty-handed.  “Before I got diagnosed, I’d be Googling like, ‘I can’t think of words’, ‘words aren’t coming out’. You know, ‘twitching eye’ and there was just nothing that ever suggested it was blood cancer,” she explains.  “They’re all such broad, weird symptoms.”

It was nearly two years before Sarah was able to learn what was wrong with her.  In fact, it wasn’t until a bout of pneumonia landed her in hospital that the mum of one finally started getting some answers, after a routine blood test showed she had elevated platelets. Even then, doctors assured her it was likely just the result of inflammation from her illness. “They said, ‘Your platelets have come back a bit high, but only slightly and it could be because of the medication you’re on,” Sarah says. “They said we’d better retest in a month’s time. And then I got a call from my GP in September last year –  I still remember it like it was yesterday. I saw that she was ringing me and I wasn’t expecting it to be anything serious, because I was feeling a lot better than I had.  “I didn’t even think for a second there was anything wrong. I’d got over my pneumonia and had no idea why she was ringing me. And she said, ‘Your platelets are really, really high.’  “It was on a Friday. She said, ‘I don’t want you to Google anything over the weekend, but you need to see a haematologist.” “Of course I started madly researching and Googling my platelet count while I was on the phone to her.  “And then I just left work, no one even knew I’d gone – I just took my keys and my bag and I remember walking home just sobbing crying.”

Horror diagnosis

The news wasn’t good. After further tests, including a profoundly invasive bone-marrow biopsy, Sarah finally learned she has a Myeloproliferative Neoplasm (MPN), a rare group of incurable blood cancers that start in the bone marrow and have no clear cause.  Sarah was advised that she has the Calr mutation. Furthermore, her MPN has a high chance of progressing into Myelofibrosis, which causes extensive scarring in the bone marrow, and can severely reduce life expectancy.

In real terms, that means Sarah is living with the constant fear that the MPN will turn on her at any given moment and Myelofibrosis is a much scarier prospect.  “There are two treatment options,” she explains.  “Chemo, which will help with symptoms, but won’t stop the progression, or interferon which I inject weekly and can in most people slow the progression. Treatment is for life and that’s something I have grappled with.” “It only helps with your symptoms.”

The reality of being a sick mum

As mum to Rose, now seven, Sarah says one of the most difficult things to navigate has been working out how to talk to her daughter about what’s happening.  “I told her about it pretty early on because she knew I was completely different to how I had been,” she says. “Once we had a diagnosis I told her, ‘There’s something wrong with my blood, and the doctors are working to help me manage it and fix it.’ “She is more than aware that I’m constantly going to doctor’s appointments, and my thing has always been never telling her white lies or giving a half truth, not obviously, giving her all gory details about anything, everything in life, but being truthful with her.

Every parent feels the pressure to ensure their children are well looked after – and that weight is even heavier when serious illness enters the picture.  “The main thing is the sense that I’m under massive pressure to make sure that she’s looked after,” Sarah explains. “I can’t really can’t let my mind go there, but there are some potentially seriously bad scenarios and they’re the things that keep you awake at night. “Thinking, I’ve got to make sure that if I suddenly get really sick we’ll be able to pay for her schooling if I’m not around.”

An extraordinary breakthrough

Incredibly, a research lab in Adelaide is working on a potential new treatment breakthrough for MPN – they just need more funds to make it happen. “There is evidence to believe that in the next 10 years there could be a potential cure for the mutation that I have,” Sarah explains. “But they need funds to continue the research. I raised $30,000 to help them earlier this year and now, I want to raise $100,000. Purely from a selfish point of view, if they find a cure that would mean I don’t have this bloody thing any more.”

You can read more about the MPN AA fellowship which was made possible thanks to Sarah’s fund raising efforts HERE.

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