Blood Cancer Awareness Month: A time for reflection on a journey from patient to full time advocate

12 September

Guest blog by Nick York from the Leukaemia CARE community.

September is blood cancer awareness month (BCAM). A month dedicated to raising awareness of these relatively rare cancers to the members of the public and increasing the profile of issues faced by patients across the globe. This BCAM holds particular importance to me as I find myself reflecting on the journey that I have been on over the past 8 years from diagnosis to full-time patient advocate at Leukaemia CARE.

Eight years ago I was in my forties and like many members of the public, I had heard of the word leukaemia and knew that it was a cancer of the blood, but my impression of it was a horrible, life-threatening and emergency condition that mainly affected children. Following a period of 6 months, being sent from one area of the hospital to another and having every test done imaginable, I was referred to haematology. A simple blood test changed my life – a diagnosis of chronic lymphocytic leukaemia (CLL).

At the time I had never heard of CLL, but it is the most common type of leukaemia out of four main types. It is a chronic (slowly progressing) blood cancer that affects over 3,000 people each year in the UK and around 94% of CLL patients worldwide are over the age of 50 years old*. For some patients their CLL will never need treating, but for the rest CLL is only treatable and not curable. For myself, at diagnosis my CLL had not progressed significantly enough to need treating and so I was put on ‘watch and wait’.

Understanding the new language and acronyms that came along with diagnosis was difficult, but the hardest part was trying to explain my leukaemia type to family and others when so many people have the perception of leukaemia that I once did. I found comfort in online support groups – other CLL patients who understood what I was going through and were there to explain things. As time went on I educated myself, learnt to live with my CLL and then started to get involved in supporting others as a patient advocate. I volunteered my time to become a trustee of the CLL Support Association and was involved in setting up the CLL Support HealthUnlocked Community. I wanted to give back to the CLL community, return the support that they had given me and advocate for improvements. In 2013, I took one for the team, when we were awarded HealthUnlocked’s Global Admin of the Year.

In June this year I began working in the Campaigns and Advocacy team at Leukaemia CARE. I have gone from knowing very little about leukaemia 8 years ago, to now supporting blood cancer patients and campaigning for change on a full-time basis. My own journey and diagnosis experience makes me realise the importance of Leukaemia CARE’s BCAM campaign, Spot Leukaemia. This campaign is all about increasing understanding of leukaemia and raising awareness of the signs and symptoms to both the public and healthcare professionals.

Late diagnosis of leukaemia is a huge problem, demonstrated by the high proportion of leukaemia patients being diagnosed upon emergency presentation (38%) compared to the national cancer average (22%). Leukaemia CARE’s patient experience survey highlighted both lack of public understanding of leukaemia and awareness of the symptoms as a potential cause. As well as identifying delays in health care professionals identifying potential cases of leukaemia and doing diagnostic blood tests. This is important because delays in diagnosing leukaemia can significantly impact outcomes for patients. This could be an impact on survival, particularly in acute (quickly progressing) leukaemia types, or for chronic leukaemias this could mean a delay in access to support and symptom management, which could significantly affect quality of life.

Without HealthUnlocked my journey would not have been possible. The HealthUnlocked platform has great power in connecting individuals to help others. Make sure you harness this power by adding your support to this campaign that could save and improve lives – the easiest way to do this is by joining our thunderclap that will be sending a message out to over 900,000 people on Wednesday 13 September.

For further details about my story and the campaign visit Spot Leukaemia, or simply search #SpotLeukaemia on social media. The online support has been invaluable to me and many others, to discover more visit the CLL Support Association and Leukaemia CARE communities.