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Nick’s double diagnosis, a global movement, and regaining his sense of self

Nick Heather credits his, and his loved ones’, positive mindset with helping him through incredibly tough days. But there were times he questioned whether he would live.

This story is a first-person account, contributed by a member of our wonderful community – all words are their own.

Nick on his bone marrow stem cell transplant day holding stem cells
Nick, holding a precious bag of his sister’s stem cells on transplant day

“You would have been dead in 2-3 weeks.”

These are the words a doctor said to me on 30 July 2020, in a very beige, windowless room in the Alfred Hospital. I was 33 years old, no previous health issues, and my life was starting to go in the direction I’d always wanted. I was diagnosed with acute lymphoblastic leukaemia (ALL) in the blast crisis phase, with a side order of chronic myeloid leukaemia (CML), which I’d apparently been living with for three to five years.

I asked what my chance of survival was. ‘’50/50,’’ he replied.

My wife, Cat, broke down in tears. Even the doctor was getting emotional. I was shocked and completely numb. Nothing can prepare you for hearing a diagnosis like that.

My life changed overnight. The only route for survival was a bone marrow transplant (BMT) or stem cell transplant (SCT), but before that could happen, I needed four rounds of chemo – all of which were administered as an inpatient. I also had 10 sessions of radiation therapy after they discovered some leukaemia in my testicles.

It’s amazing how the human mind works. I took the attitude of complete and utter positivity, as did my wife and anyone around me. I didn’t want any negativity. We were going to beat this. I remember many pep talks with myself, where I repeated the words, ‘I will beat this’. It makes me sound a bit crazy recalling it now, but it got me through some seriously tough days.

I was incredibly lucky that my sister Sarah-Jane was a perfect match for my BMT. Although COVID was rife in Melbourne at this point, and it was incredibly difficult to get Sarah-Jane to Australia, we were eventually able to get her here, thanks to the help of a kind and quick-acting stranger.

This experience, being sick, and Sarah-Jane’s incredible gift have taught me that if you can do something to help someone, always do it. An act that may seem insignificant to you, could change someone’s life – or in my case, save it.

On the run up to my transplant, something incredible happened.

Sarah-Jane’s husband, Brendan – also a great mate of mine – managed to get into the country for my transplant. He wanted to do something while in hotel quarantine to help me, and to raise funds and awareness for the Leukaemia Foundation.

He decided to run 152 km on a treadmill in his hotel room during the two-week quarantine. Amazingly, friends (and friends of friends) around the world joined in and completed the 152 km. One of my good friends in New Zealand even played 152 holes of golf in one day! It was a massive morale boost for myself and Cat as my transplant approached. Even better, a whopping $276,672 was raised for the Leukaemia Foundation! It’s something Brendan and everyone else involved should be extremely proud of.

My transplant experience was relatively smooth. I had the transfusion of my sister’s cells on 11 December 2020. I found some of the conditioning quite rough, particularly the total body irradiation, but overall, I had a good run and was released from hospital on Day +20. Things seemed to be going well. On day +40 I got biopsy results that showed zero leukaemia cells – I was finally cancer-free. It was the best news I’d had in months.

I enjoyed it for two days, before things started going sideways. I had a cough I couldn’t shift, and it was affecting my breathing. On day +42 I woke up with a temperature and vision issues, so admitted myself via emergency.

I spent the next two weeks in hospital and as the days went on, things got significantly worse. I needed more oxygen each day and the doctors couldn’t seem to diagnose or treat my cough. My bloods also dropped off massively during this period. After 17 days in hospital, with my oxygen requirements increasing daily, my doctors decided a lung biopsy was needed to help diagnose the problem. Typically, it’s a quick, routine surgery, but when I woke up, I couldn’t breathe.

Transplant complications sent Nick to intensive care on a ventilator
Nick was placed on a ventilator in ICU

It was harrowing waking up and trying desperately to get oxygen into my lungs but feeling nothing getting in there.

I was absolutely terrified. My lungs were so weak and infected that the surgery was too much for me to handle. I was sent to ICU and put on a ventilator. What followed was probably the hardest four to five days of my life. I needed the ventilator full-time and was in serious pain from surgery. Being on a ventilator is an awful thing to experience; I wouldn’t wish it on anyone. It was the only time where I thought dying was a genuine possibility.

On day five in ICU, some good news finally arrived. From the surgery, the doctors diagnosed my issue as ‘organising pneumonia’. Things started improving quickly from there and by day eight, my breathing had improved enough to move from the ventilator to nasal prongs. I spent another week in ICU, bed-bound the entire time.

It’s incredible how quickly my body degraded during those weeks. Before my transplant I weighed 95kg, after my time in ICU, I weighed 81kg. On day 12 in ICU, I tried leaving my bed for the first time.

With the help of two physios and a nurse, I shuffled two to three feet from my bed into a chair. I made it, completely breathless and totally exhausted. I cried as I sat in the chair trying to catch my breath. Slowly but surely, I learned to walk again. It was incredibly tough and not something I ever thought I’d go through, but after eight weeks in hospital, I was finally allowed to go home.

What followed is something no one can prepare you for. Having been ‘Mr. Positive’ throughout everything blood cancer had thrown at me, this whole experience had rocked me to my core. I was a shell of my former self when I got home. My confidence levels were non-existent, and I was terrified things would take a turn for the worse and I’d end up on a ventilator again. Mentally, all I could think about were negative things and physically, I was half the man I was before. I’m so grateful I had my wife and family by my side during this period. The next few months were incredibly hard as I battled constant infections, ongoing breathing issues, and a mental struggle to get my self-confidence back.

Nick with his wife prior to his bone marrow transplant
Nick with his wife, Cat

I’m delighted to report that things are going my way again.

I’m day 224 post-transplant. I’m still in remission, my breathing issues are under control and mentally, I’ve regained my positivity and confidence. I sought the help of a psychologist, which helped when I was feeling super low. I encourage others to do the same rather than suffering through. I’m now back working three to four days a week and managed my first run in over a year a few days ago.

I’m excited for the future.

Need to talk? We encourage you to care for your own mental health and wellbeing by calling 1800 620 410 to speak with a Blood Cancer Support Coordinator.

Last updated on February 3rd, 2022

Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.