My name is Nicola, and I’ve lived in central Christchurch for 30 years with my partner, Robin. We have a 17-year-old daughter, Albertine, and a schnoodle, Cleo.
For many years, I owned a New Zealand-made clothing shop in High Street, but I eventually closed the business to stay at home with Albertine when she was born. I had planned to return to work once she started school, but those plans were scuppered by the earthquakes. Instead, I was busy managing the repair and complicated rebuild of our home, and enjoying life as a mum.
I’ve always considered myself a healthy, active person. Around this time, living in the central city and having a new puppy meant I walked everywhere. I’ve also been a vegetarian for 35 years, love to cook, and have a pretty good handle on nutrition, so I never imagined getting seriously unwell.
Looking back, I first noticed symptoms about four years before I was diagnosed. I was 50 at the time, and they seemed very similar to the symptoms of menopause – hot flushes, sweats, fatigue, headaches, aching bones, and pins and needles. I usually prefer to reach for natural remedies first, so I tried to manage the symptoms with herbs, although they didn’t really help in this case.
If there’s one thing I’d say to other women around my age, it’s this: don’t assume everything is menopause. If something doesn’t feel right, please see your GP and get it checked.
In September 2021, we holidayed in Queenstown, where I noticed I was unusually breathless walking up hills. When we returned home, things suddenly became worse. My head was pounding when I climbed the stairs, and I began feeling quite dizzy.
I decided I’d better book a GP visit once the holidays finished. But the next night, I had a strange turn and almost fainted. I wondered if I might be having a stroke, so Robin took me to the 24-hour surgery.
Everything moved very quickly after that. I was diagnosed with myelofibrosis, and because I’d delayed having my symptoms checked for so long before seeing the doctor, the disease had progressed to the point where I needed a stem cell transplant. My specialist described it as “high risk, high reward.”
The alternative was to extend my life for just a few months, so I decided pretty much immediately to take the transplant option! While I waited, weekly blood transfusions helped keep me comfortable.
Normally I’m someone who likes to research everything, but this time I decided to trust the experts. Before my transplant, I was given plenty of information to read. It was confronting, but it also helped me feel prepared.
My GP also suggested that I might like to speak with someone who had undergone a stem cell transplant two years earlier. He generously agreed to meet with me. Although everyone’s treatment and recovery are different, hearing about his experience gave me a much better idea of what to expect on the ward.
We decided to keep my diagnosis fairly private and only shared the news with family and close friends – mainly to shield our daughter who was about to begin secondary school. In the months before my transplant, we had a lovely summer holiday, watched lots of funny movies, ate a lot of nice meals and just focused on staying positive.
A donor match was found in Europe, and my transplant was scheduled for June 2022. The generosity of strangers still amazes me.
The pre-transplant chemotherapy was intense, and the early days were harder than I’d anticipated, but I felt so well cared for on the ward. The nurses and support staff were incredible, and I have the utmost respect for the amazing specialists and registrars.
After about four weeks, I was able to come home. Everyone has different after-effects and symptoms of graft-versus-host disease (GvHD). In my case, I was very fatigued and had intense nausea that lasted well over six months. It was the first winter after Covid, so I was glad to isolate at home.
Weekly hospital appointments for monitoring helped reassure me that everything was progressing as it should. I’m not the most patient person, and in hindsight I probably tried to do a bit much. But after six months, I was out again with the dog, and that summer we managed holidays in Auckland and Tasman.
Rebuilding your immune system takes time, and over the following two years I was gradually revaccinated. I think I caught every cold and tummy bug going, and even had shingles, but eventually things improved. Two years after my transplant, I was well enough to celebrate with a family trip to Europe.
I’m now four years post-transplant and feel pretty much back to normal.
Recently, I asked my family how they felt about it all. Robin said he was worried, but just had to trust the process and hope for the best outcome. Albertine admitted she had actually been terrified, although she did a great job of convincing me she was okay. I’m very proud of how she handled everything.
I am immensely grateful to my specialist, the entire medical team, the incredible nurses on the ward, and to my family and friends for their constant support.
One of the most meaningful moments throughout my journey came when I received an anonymous card from my stem cell donor, a young woman from Amsterdam. She wrote that she had lost someone herself, and said:
“Please know that my stem cells come from a heart of love, hoping for your recovery.”
Her kind words meant so much to me. In those early days of recovery, I read them many times.
To anyone facing a stem cell transplant, I’d say this: Stay strong. Hold onto hope. And know that you are being cared for by experts. And if you're a woman experiencing symptoms that don't seem quite right, don't put everything down to menopause. Getting checked could make all the difference.
