Take 5 With...Elle Halliwell, Media Personality, Fashion Journalist & Mum
by Rosie McKay
One year on from being diagnosed with leukaemia, we chat to the inspiring Elle Halliwell about motherhood, life and her new-found purpose and perspective...
One year on from being diagnosed with leukaemia, we chat to the inspiring Elle Halliwell about motherhood and living life with new-found purpose and perspective...
Fresh-faced and rarely seen without a smile, it's hard to comprehend what a rollercoaster ride the last 12 months have been for Sydney-based media personality, fashion journalist and young mum, Elle Halliwell.
Last May, Elle found out she and her husband, Nick Biasotto, were expecting their first child. It should have been a moment of pure happiness - but at the time it was just another blow in what was shaping up to be the worst week in the couple's life. You see, just 48 hours earlier, Elle had been diagnosed with Chronic Myeloid Leukaemia (CML), a rare and at this stage incurable blood cancer. "I had so many balls in the air, and that week I just remember that every single ball fell to the ground in one go," recalls Elle.
Pregnant and faced with her own mortality and that of the little life growing inside her, Elle and Nick had to make another heart-wrenching decision - terminate the pregnancy and start Elle's treatment immediately as advised by doctors, or put off the treatment and go through with the pregnancy. "It was scary", says Elle. "But I think one of the biggest factors that cemented my decision [to go through with the pregnancy] is knowing that the cancer I had wasn’t hereditary. If there was a guarantee that he was going to get what I had, I probably would have considered termination because I couldn’t think of putting another living thing through that. I'm amazed I could grow something when my body was so sick, but it just proves the incredible resilience of the human body."
In fact, "resilience" is a common theme in Elle's truly inspiring story. In a situation where perhaps it would have been easier to retreat from the public eye (and understandably so!), Elle has instead chosen to use her situation to raise awareness for CML. She explains, "I think working in the media you realise the impact that someone’s story can have on other people, and I feel almost obligated to raise awareness for an illness that has been almost forgotten in terms of general cancer publicity. I thought if I am in a position to explain to people what it is and tell people that research into rare cancers is so important then I have an obligation to do that. I just feel like that this hardship I am going through, there has to be a reason for it."
We recently caught up with Elle to chat about life one year on from her diagnosis, being a mum to now five-month-old Tor, and how this life-changing experience has given her new perspective and purpose.
Since our chat, Elle has released her memoir called A Mother's Choice, detailing all the things she had to confront taking on motherhood with cancer. You can order it here.
How did it feel to celebrate Mother’s Day this year? Is Tor keeping you on your toes?
He is! He’s such a sweet little kid. He’s beautiful and everyday he wakes up and does something new and it just fills me with joy and awe. I felt like such a long wait to have my baby, so this Mother’s Day was really special for any mother celebrating their first, but for me it was also a relief - we got to this point.
Last Mother’s Day was certainly a very different situation to the one I experienced this time. That one was full of worry and anxiety and trepidation, but this one was full of excitement and wonder.
You call Tor your miracle baby - how does it feel to know your body grew a human while fighting a deadly cancer?
It was scary. I think one of the biggest factors that cemented my decision [to go through with the pregnancy] is knowing that the cancer I had wasn’t hereditary. If there was a guarantee that he was going to get what I had, I probably would have considered termination because I couldn’t think of putting another living thing through that. I was amazed I could grow something when my body was so sick, but it just proves the incredible resilience of the human body.
In your initial 60 Minutes interview after your diagnosis you said weren’t scared of dying as long as the life inside of you was ok…has that changed since having Tor?
Yes! I am shit scared of dying! Now that I have got a baby it has changed a lot. When it first happened, when you’re put in that situation you really have to think about it and I was like, if it [dying] happens it happens. And I think I felt like there was a lot higher chance of it happening in those first few months when everything was very unknown to me.
But now I feel really strong and I feel like this medication [I am on] is really going to work, and it has already started to work which is great. I guess feeling a little bit more certain that I’m going to live makes the alternative a little more scary!
How much of a support has your husband Nick been?
I couldn’t have done it without him – he’s been such an amazing guy. We’ve been together for 12 year, married almost 4, and we’re best friends. He’s a legend. And now we’re 4 – me and Nick, Tor and our cat Chairman. We are a little team and we have lots of little adventures and I can’t wait for some more
How did you get through those grim days when you were dealing with your own mortality while pregnant?
I think the fact that it was my first child and that I didn’t know any different. While I knew that motherhood could be a totally amazing and positive experience, I hadn’t experienced that myself. I just had to look and and go, ok this is the situation and you just have to take it every day at a time and celebrate the little wins. Everytime we went to the obstetrician and they said that they could hear the heartbeat and that things seemed to be going well, I would celebrate in my own little way.
On the down days I would have a cry every now and then, but then I would pick myself up and go, "Ok it’s a bad day, but it’s definitely not a bad life, so pick yourself!" I just tried to concentrate as much I could on my own health and making sure that I was doing everything that I could to keep myself in really good shape to make sure that I could get through the next week. Just taking it moment by moment really helped me to get through those seven months of waiting.
Was taking things moment by moment a real shift in how you thought about life?
Absolutely! Before everything happened I was studying, I was trying to launch a new business, I was juggling my work not only on the paper but also with radio and doing [appearances] on Channel Nine as well. I had so many balls in the air, and that week I just remember that every single ball fell to the ground in one go.
I am a bit of control freak and a bit of a perfectionist and it was at that point I realised that life isn’t perfect and that I had my priorities a little bit skewed. This is a really good opportunity to take a step back and think about what’s really important in my life - and work of course is a really massive part of my life, and I love what I do – but I thought just for this next year it’s not about work, my main goal is to focus on staying as healthy as I could until I had this baby.
Were the pregnancy symptoms the catalyst for your doctor’s visit?
No! I got gastro at an event for Autumn Racing, and I was feeling so ill so I went home early from work that day and then the next day I went to the doctor’s to get a Doctor’s certificate. While I was there I said, look I am planning to have a baby later this year, or me an my husband want to try later on this year, and being a control freak as I said before, I said I want to check my folate and Vitamin D [levels] so that in a few months time I’ve got all that perfect and that’s when they found that there was something else wrong. So it was just luck and it was serediptious that I went to the doctor when I did.
I wasn’t pregnant at that stage, it was between going to the doctor for the initial blood test and going to the haematologist to get the full on blood test. When I first went to the doctor he said your platelets are a bit high, but it’s probably just because of the gastro, so I wouldn’t worry about it. Then in between that time going to see the haematologist I had fallen pregnant, and I was about 3-4 weeks pregnant by the time I had been diagnosed. So I really didn’t have very many symptoms because it was very early on in the pregnancy.
Looking back I did notice I was a little more tired, but that was after I had [received the diagnosis] and started to get a bit more bone pain, which I found out was from the cancer, and just exhaustion. But otherwise it was a dream pregnancy, I felt pretty good.
You started your treatment five weeks after Tor was born – how long do you need to stay on the meds daily?
Possibly indefinitely. Hopefully if they work after about five or six years if my levels have gone down and they stay almost undetectable for a certain amount there’s a chance I could possibly try going off them and see if the cancer doesn’t return because there is a chance that some people can stay in deep molecular remission, but I think it’s only a 40-50% chance of that happening at the moment. But if taking medication for the rest of my life means stay alive, it’s a small price to pay!
How are you feeling at that the moment?
I am feeling good. The medication has its moments. Some days I wake up and feel like I am 80 years old because you get bone pain, fatigue and some skin problems - and my hair is starting to get thin, but it’s a small price to pay so you just get through it.
I mean I am dealing with the exhaustion of being a mum anyway so what’s a little bit of extra tiredness! I just try not to think about it. I have much more important things to think about than feeling sorry for myself – I’ve got shit to do!
You’re often described as being super brave and super inspiring, why have you chosen really try and raise awareness for CML?
I think working in the media you realise the impact that someone’s story can have on other people, and bringing awareness to a charity or an illness can have really big impact. And working on the paper you realise how much impact it can have, and I feel almost obligated to raise awareness for an illness that has been almost forgotten in terms of general cancer publicity.
You hear about breast cancer, and it’s amazing they get so much publicity and raise money for research, but CML is a very unknown illness and I thought if I am in a position to explain to people what it is and tell people that research into rare cancers is so important then I have an obligation to do that.
When I wrote that piece in the paper I really did underestimate the effect it was going to have. The response really fuelled my desire to raise awareness for CML, and the feedback that I have had from people living with CML has been phenomenal. Whoever thought that such a rare leukemia would be in the pages of Vogue magazine. I just feel like that this hardship I am going through, there has to be a reason for it.
Do you believe that everything happens for a reason?
Totally! I definitely believe in the universe – I am not religious, but I am spiritual and I do believe there is a higher power at work and I think as the old saying goes “If life gives your lemons, turn it into lemonade or make a gin and tonic!”. I am just trying the make the best of an unfortunate situation.
I also just think perspective is important. Yes I’m going through what I am going through, but there is someone in a worse situation than me. I could have this illness and live in a third world country where they don’t have such amazing medical facilities. The Australian medical system is fantastic. Having my drugs on the PBS means that these tablets that could cost me 90K a year are [subsidised]. I am so grateful that I live in a country that if you get sick most of the time it won’t be as hard a financial burden as if say you were living in the US.
How important has family been during this journey cancer and motherhood?
I’ve really realised the importance of family since all this happened because the support they have given me has definitely brought my family closer together and my extended family as well. Everybody rallied around me so much when all this happened and my heart just burst with love and appreciation for these people that have always been there. But, I guess it’s not until you go through adversity like this that you really realise how incredible your family can be when the going gets tough. That was a real eye-opener to me to have people you love just there if you need them.
Your own mum had gone through a similar situation when pregnant with you – doctor’s advised her to terminate, how much comfort was your mum at that time?
She was amazing, but it was really tough for her because having your daughter going through something like this really shook her up. But she stayed so strong from me and she came down from Brisbane to look after me and make sure I was doing alright. Just having your mum around is comfort enough. Just being able to give her a hug when you need to. She’s an amazing woman, I’d do anything for my mum – I love her!
Does it almost feel like you need your mum more when you have your own baby?
Absolutely! I take my hat off to single mothers not only not having the support of a husband, but if you don’t have any family nearby it is seriously one of the hardest things you can do. [Motherhood] is challenging at the best of times and sometimes you just need a break!
How has Professor Tim Hughes impacted your life? He was the one person who believed you could have your baby and fight the cancer too.
He’s just amazing. He recently received a global award and it’s so well-deserved. The amazing things he’s doing for CML is incredible and he’s just such a lovely guy as well so we’ve really formed a nice friendship over this last year and he often checks in and asks how Tor is, and has just been a great support. And in turn I am doing whatever I can for South Australian Medical Research Institute (SAMRI) I’m trying to raise money for them and be a bit of an ambassdor for them because they are doing some incredible things for CML research.
Is there a cure for CML?
No there is not, but I am sure there will be soon. I am staying positive about that. Just to think that 10-15 years ago, CML sufferers only lived 5 years, but to think in just over a decade so much has changed, who knows what the next decade could bring. And hopefully, considering that this treatment has become so successful for this particular cancer, who knows what other cancers are going to be able have the livelihood that those living with cancer extended as a result of the research done. So hopefully CML research will be able to have an impact on other cancers and survival rates.
What’s next for you
I’ll be back that paper a little later in the year and I am still doing the Nova radio show because it’s a small amout of time out of my week. I am hopefully going to do some more speaking [engagements] because I want to inspire people to get through the challenges in their life and as I said I almost feel like I have a duty to spread the work about CML research. That’s important to me.
