The one in 110,000: Neda’s story
I’m Neda and I’m just one of the 110,000 Australians currently living with blood cancer.
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…
Cut to 2018 when I was sick (literally) of being told nothing else was wrong with me. Waking up each day choking, struggling for breath is NOT normal and I was determined to get answers.
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.
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.
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.
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.
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, 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.
Todd attended carer sessions, myeloma forums and support groups hosted by the Leukaemia Foundation.
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.
At the time of writing this, I’m preparing for my second stem cell transplant.
After this latest transplant I will move to the U.S. so I can afford to access the drug, Revlimid®. It’s not yet listed on the Pharmaceutical Benefits Scheme (PBS) here in Australia, so we don’t have much choice.
Luckily, Todd has a job lined up over there, but I don’t know what I would do if my family didn’t have the right to live and work in the U.S.
I can’t afford the $1000 a month it costs for the drug here and my doctor said I will need it to stay in remission.
The generous supporters of the Leukaemia Foundation are giving me hope that one day soon I can afford to access it here at home.
You might not realise, but last year this 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.Posted on March 11th, 2020
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.