About Myelodysplastic Syndrome

Myelodysplastic syndrome is a group of diseases that affects normal blood cell production in the bone marrow. (Leukaemia Foundation Australia)

In a nutshell, your bone marrow doesn’t work like it should because of the presence of abnormal blood cells. These abnormal cells don’t grow into mature blood cells and often die prematurely. Therefore, the number of normal mature red blood cells, white blood cells and platelets are markedly reduced in the bone marrow.

There are various types of MDS and in some cases, they can progress to acute myeloid leukaemia (AML). This is why MDS is sometimes termed as a pre-leukaemic disease.

The treatment of MDS depends on the several factors such as age, type of MDS and health. But the only potential cure of MDS is a bone marrow transplant. Because of the severe risks a bone marrow transplant carries, it is only suitable for young patients with MDS.

The doctors say a transplant is the best option for me.

I really hope my brother is a match.

For more info on MDS: http://www.mds-foundation.org/what-is-mds/

It’s not leukaemia

Based on the biopsy (remember the green whistle?), my bone marrow is said to be hypocellular (low number of blood cells). Which explains my symptoms: fatigue and breathlessness because of low red blood cells, bruises and red spots because of low platelets and infections because of my low white blood cell count. They rule out drugs and toxins as the cause of my hypocellular bone marrow, and leukaemia.

They find some abnormal cells in my bone marrow, which led them to believe my condition to be myelodysplastic syndrome (MDS). It’s common in the elderly but very rare in a young, 25-year old. But it’s not leukaemia and I get to go home and sleep in my own comfy bed!

 

If you haven’t already, meet me at the beginning: https://beebstory.wordpress.com/2016/01/18/first-blog-post/

No flowers allowed

I love my friends! They keep me laughing. They keep me going. I don’t know what I’d do without them.

Darren did all the hard work of letting my family and close friends know about my condition. Friends in Sydney, Melbourne and Singapore came to visit me with gifts, hugs of encouragement and flowers. Flowers, unfortunately aren’t allowed in the haematology ward. This is because the patients have weak immune systems that can be harmed by the soil residue on flowers. #goodtoknow

They check my heart and lungs to see if I’m fit for chemotherapy. And the fertility doctor speaks to us about fertility preservation options.

I cried, at the thought that I may not be able to have kids. Then I cried some more.

 

If you haven’t already, meet me at the beginning: https://beebstory.wordpress.com/2016/01/18/first-blog-post/

The green whistle

My 2015 was not an easy one. 2016 was proving to be a lot harder.

2016 was going to be a better year because finally I get to work as a registered pharmacist and arrangements had been made for my work sponsorship in Australia. I made plans to start dancing again and to visit Israel in July.

But life tends to throw curveballs. I prayed that God would be with me.

On Tuesday 19th Jan 2016, I met a new friend, the Green Whistle. Penthrox (methoxyflurane) is an inhaled analgesic used in emergency situations such as acute trauma and in my case, a bone marrow biopsy. I remember its sweet taste, and the feeling of a bit of my hip bone being dug out. I also remember being very talkative after. That was kind of fun!

I finally get moved to the haematology ward, but I had to be put up in a room with 3 old men initially before being moved to an all-female room. I catch a fever during this time so they dose me with IV antibiotics.

They’re prepping me for chemotherapy.

 

If you haven’t already, meet me at the beginning: https://beebstory.wordpress.com/2016/01/18/first-blog-post/

It all started with

The small red spots. The small red spots that appeared on my face after I’ve had a cry.

Then came the headaches.. the bruises..

More red spots on my arms and legs..

And the worst part, the heavy thudding in my head after climbing a short flight of stairs..

On Sunday 17th Jan 2016, I turn ghost pale and I fall asleep in church, probably for the first time.

I take a blood test the next morning. And by 5pm that day, I’m in emergency with my partner, Darren.

The emergency doctor told us it was leukaemia, seeing as how all my blood cell counts were so low. We were told to be prepared for that diagnosis and a big day of tests the next day.

I cried all night in the emergency ward feeling sorry for my dad, my best friend and the dreams and goals that never came true.