My name is Linda and I am 67 years old. I live in Canberra with my husband and adult daughter.
Symptoms of Myelofibrosis
In September 2022 I was having some dizzy spells and having follow up blood tests for low iron levels. My haemoglobin result came back very low and I was immediately referred to hospital for a blood transfusion and was referred to a haematologist. I went for various other blood tests and also underwent two bone marrow biopsies. The results of these tests pointed toward possible diagnosis of myelofibrosis. I underwent gene testing to see if there was a mutation and the results were negative.
I was regularly receiving blood transfusions because my haemoglobin was always low. I was also suffering from extreme fatigue. I was no longer able to carry on with my volunteering activities, walking or bicycle riding as was my custom before September.
Referred to Sydney Specialist
By April 2023, due to my low haemoglobin and other low blood counts, I was referred to a specialist in Sydney for consideration for an allogeneic (donor) stem cell transplant. An allogeneic stem cell transplant was not available in Canberra; only autologous (self) stem cell transplants were.
Second Opinion and Diagnosis
By June 2023 I sought a second opinion from a different Canberra haematologist who performed more bone marrow biopsies and more blood tests. The results of these tests again pointed toward myelofibrosis but they were not definitive. So a professional review of all my tests was undertaken by a 3rd haematologist who concluded that I had myelofibrosis. The ruxolitinib drug was considered not suitable for me due to my low haemoglobin levels.
Stem Cell Transplant
The prognosis given to me by my doctors was 5 years with a risk that my myelofibrosis could change to leukaemia. So my health care teams from Canberra and Sydney decided to offer me a stem cell transplant. Two donors were found. Wasn’t I blessed!
It took a while for the transplant to be scheduled; and finally I was booked in for May 2024. On 2nd May 2024 I received my transplant. I had chemotherapy in the lead up to this date. I had a little more chemo for a few days after as well. Recovery was very, very hard – I was very ill with terrible mouth ulcers and nausea and diarrhoea. I spent 4 weeks in hospital. Then I spent another 6 weeks as an outpatient, with twice weekly visits to the hospital clinic. Thanks to the Leukaemia Foundation I stayed in a unit opposite the hospital. I also had financial support from the Arrow Bone Marrow Foundation in the form of petrol and grocery vouchers.
Successful Transplant
A special test on a bone marrow biopsy revealed that my stem cells were 100% donor stem cells – so my stem cell transplant was a success!!
When home in Canberra I needed to travel to Sydney initially every 2 weeks to see my transplant specialist. Gradually the frequency of these visits was reduced. I now see my specialist in Sydney every 2 months.
Photo of book cover of ‘Linda’s Little Book of Poems’ with illustrations also by Linda. Writing and illustrating the poems helped Linda’s recovery.
Graft vs Host Disease and Mental Challenges
In September/October 2024 I developed severe graft vs host disease (GvHD) where my new stem cells were attacking my gut. I was very very sick and needed to be hospitalised.
At this time I also began to suffer mentally. The isolation period after the transplant was quite long and the constant vomiting was harrowing. When the GvHD settled I began small walks and outings. With the help of my psychiatrist and psychologist I gradually began to feel a bit better by Christmas 2024.
But then came the questions: “What now?” “Where do I go from here?” I was very depressed by these questions, as all my volunteering activities before the transplant had stopped and were no longer viable to return to.
By April 2025 my mood picked up after I attended some poetry workshops and art courses. I also began to resume my walking and bicycle riding. I worked on my poetry and in September 2025 I produced my very own poetry book! I’m now looking forward to another art course – watercolour botanicals!
Support During My Journey
I have to say that I have had, and still have, a wonderful caring health care team across Canberra and Sydney.
As already mentioned the Leukaemia Foundation provided accommodation whilst I was receiving treatment in Sydney, and The Arrow Bone Marrow Foundation provided financial support.
Throughout my journey I have been supported and cared for by my family and friends. My husband has been an absolute rock. When my husband came down with Influenza A, my sister from Melbourne cared for me for 4 weeks whilst I was an outpatient in Sydney. My other family members and my friends supported me with their visits, phone calls and prayers.
I was also supported and cared for by a special group – the local Canberra MPNAA group who meet weekly for a walk and coffee. I discovered this group in June 2023 and I would join them weekly for coffee. They saw me through thick and thin. I still join in for coffee, but also can now join in the walks!
The other group that helped me a lot after my transplant is the Transplant Tribe, a monthly online zoom group arranged by the Arrow Bone Marrow Foundation. Listening to other transplant survivors and their experiences has helped me tremendously.
Thankful
I am extremely and forever grateful to my God and my stem cell donor. They have given me an extension of my life beyond five years where I can enjoy time with family and friends; enjoy being active; enjoy new hobbies and new horizons. I am still to work out what volunteering activities that I could be involved in, but I’m sure that will come with time.
