One in 110,000: Neda’s Story
Hi, I’m Neda and I’m just one of the 110,000 Australians currently living with blood cancer.
Neda, who recently stayed in one of our accommodation centres while undergoing blood cancer treatment, has a special message to share with Leukaemia Foundation supporters.
On behalf of every family battling this devastating disease – I want to say thank you and tell you about the incredibly vital role you’ve played in all our blood cancer stories this past year.
My own story started nearly a decade ago. Complications after my pregnancy resulted in abnormal bleeding, chronic pain, bad headaches and constant respiratory issues.
But I just kept being told I had severe anxiety and needed to sleep – well, of course I was anxious, I knew there was something seriously wrong with me…
Years later, finally a (brilliant) doctor asked for MY story and that’s when I was set on the right path to diagnosis.
Just days before boarding a plane to the U.S. I received the phone call;
“Mrs Masters, do not get on that plane, if you do…you might die.”
I was diagnosed with the incurable blood cancer, myeloma, and I had the worst type. I would need chemotherapy and then a tandem stem cell transplant to survive.
This is the first way you are making a difference in my life. Your donations are hard at work supporting research in early detection and prevention.
The funny thing was, I wasn’t even scared at this point. I was just relieved to know I wasn’t going crazy and I could finally start working towards a healthy life.
Myeloma is not an easy disease to diagnose either. At first I was told I had lymphoma however, the diagnosis changed to myeloma an hour before my first treatment.
Your support is giving me hope that others like me could be diagnosed sooner. Because of you, right now a Blood Cancer Taskforce is hard at work, concentrating on better diagnostics and educating more health care professionals about the disease so it can be picked up sooner.
After my diagnosis I was told I needed to be in the closest capital city as soon as possible to begin treatment.
So many questions. How were my son and husband going to cope? Where were we going to stay? How sick am I going to get?
Thankfully, in my first week in hospital I received a visit from my Leukaemia Foundation Blood Cancer Support Coordinator, Sheila.
My first ‘Angel of Mercy’, Sheila helped me navigate all the big questions. She told me what was coming, the best haematologists to seek out and all the amazing services I could access through the Leukaemia Foundation.
Because of you, in the past year other individuals and families like me have been visited by someone like Sheila over 26,542 times offering emotional support and assistance through the shock of a blood cancer diagnosis.
Then there’s the accommodation – could you imagine if my husband or mum had to pay for a hotel for weeks on end while I received treatment?
We were offered a safe and clean apartment, completely free of charge and close to the hospital, with plenty of people around to assist us with whatever we needed.
But it’s not only about the money, it’s about keeping families together – you ensured that 837 families in the past year weren’t kept apart by a diagnosis and could stay close while their loved one faced the biggest challenge of their lives.
My 15-year-old son, Sana, also wanted to be close to me while I had treatment.
Sweet Nicole from the Leukaemia Foundation, another angel you sent me, told me about the hospital high school he could attend close to our accommodation and sorted out the enrolment for me.
That really meant the world to my husband, Todd, and to me – it was so important we all stay together during these tough times.
And it doesn’t matter where you live with so many resources now available online to help people living with blood cancer and their families navigate a diagnosis. Again, this was all made possible by you.
At the time of writing this, I am recovering from my second stem cell transplant and am full of hope and strength knowing you are behind me all the way.
I am now on the drug, Revlimid® which earlier this year was listed in on the Pharmaceutical Benefits Scheme (PBS) here in Australia.
Before, I wouldn’t have been able to afford the $1000 a month it costs for the drug and my doctor said I will need it to stay in remission.
Thank you for your incredible support in getting this drug listed on the PBS, with the Leukaemia Foundation advocating for the medical needs of people like me.
You might not realise, but last year your support also helped three new medicines to be listed on the PBS, ensuring people living with blood cancer can access affordable treatment.
So that’s my story so far. Thank you for being part of it.