I have been fighting blood cancer for 12 years, and I have been fighting it hard. I have taken every opportunity given to me to treat it and live my life to the fullest. When my MDS relapsed and showed signs of progression to AML in July 2015 I was shocked to find out that the choice to fight was no longer in my hands. I had to ask for permission to fight.

Emma Paine at MDS Awareness Day

How I was given a second chance

Emma Paine is an MDS patient and an active member or our MDS Patient Support group. She had a first stem cell transplant in 2011 and recovered well, but her MDS came back in 2015 and she needed a second transplant.
Funding for second transplants has been revised in the UK due to “cost-effectiveness” issues and hospitals all over the UK need to seek special funding requests for those patients (IFR=Individual Funding Requests)
Emma battled to be granted a further chance to live and she managed to have a second transplant in January 2016. She says in her blog Emma’s Fight against MDS

Whilst waiting for approval from the IFR I got sicker and sicker, I spent roughly 3 months in hospital on continuous IV antibiotics as my immune system weakened and the AML progressed. In the end my consultants made the decision that we needed to go ahead with chemotherapy regardless of the decision on the second transplant funding. This was a risky choice, as although the chemo would kill the cancer cells, it might also kill too much of my normal bone marrow for me to stand a chance of recovery. However, if we left the AML to progress further then the transplant might not stand a chance of working full stop.

I was lucky and I got given a second chance. I was deemed to “demonstrate exceptionality” and to be a “cohort that would benefit due to long term survival”. BUT I knew of others that weren’t as lucky as I and weren’t deemed exceptional. What gave me the right to live but not them?’ (here I did give more information on their story, but I won’t do so in my blog without their permission!)

Emma Paine at the parliament

Emma at the Parliament, attending a meeting to discuss the decision to not routinely fund second transplants.

The meeting was a bit daunting. First time I have been to anything as official/formal as this... I was called up first to say my 2 minute patient story... I was lucky and I got given a second chance... BUT I knew of others that weren’t as lucky as I and weren’t deemed exceptional. What gave me the right to live but not them?’

Emma's blog: about emotions, infections and much more

Emma's been keeping a blog since August 2015, with all the details of her journey through chemotherapy and bone marrow transplant.

She's recorded her emotions pre and post the transplant, and deals with subjects common to all MDS patients, such as mental health, infections and her Hickman Line insersion and treatment.

You can follow her story here: Emma's fight against MDS - My battle against the blood cancer MDS

Please do send us your story – whether you are a patient, family member or friend:
Email it to mds-uk@mds-foundation.org, or call to our main office Tel: 020 7733 7558.

You may talk about any aspect of the condition, or how your experience has affected or changed you. Feel free to add photos as well. Thank you in advance!

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