My Story – From cancer suffer…to full time advocate at Leukaemia CARE

Nick York tells his story of suffering with cancer to becoming a full time advocate at Leukaemia CARE

September is Blood Cancer Awareness Month (BCAM), a month dedicated to raising awareness of these relatively rare cancers 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 eight 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. However, my impression of it was a horrible, life-threatening and emergency condition that mainly affected children.

I had been undergoing investigations for another health complaint, but following a period of six months, being sent from one area of the hospital to another and having every test done imaginable, my symptoms were finally recognised and 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. For the rest, CLL is only treatable but not curable and this may be life-limiting. For myself, at diagnosis my CLL had not progressed significantly enough to need treating and so I was put on ‘watch and wait’.

Being told you have a cancer, that it’s not going to be treated yet but you will have it for the rest of your life, is one of the hardest things I’ve ever had to deal with. It’s safe to say the cancer certainly took hold of my emotions more than it affected my body to begin with.

Moreover, 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 and meeting other CLL patients who understood what I was going through and could 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 numerous peer-to-peer support groups. I wanted to give back to the CLL community, return the support that they had given me and advocate for improvements.

In June this year, I began working in the Campaigns and Advocacy team at Leukaemia CARE. My role focusses on encouraging GPs to learn more about blood cancers and supporting them to better recognise and diagnose blood cancer. This is of particular importance, as a Leukaemia CARE patient experience survey identified delays in healthcare professionals recognising potential cases of leukaemia and doing diagnostic blood tests. My own diagnosis story is an example of this.

This could be contributing to the high proportion of leukaemia patients being diagnosed by emergency (38%) compared to the national cancer average (22%). Delays in diagnosing leukaemia can significantly impact outcomes for patients. This could affect survival, particularly in acute (quickly progressing) leukaemia types, or for chronic leukaemia patients, this could mean a delay in access to support and symptom management, which could then significantly affect quality of life. Leukaemia CARE’s Blood Cancer Awareness Month campaign, #SpotLeukaemia, is aiming to see lives both saved and improved by early diagnosis.

So, my story is this – I have gone from knowing very little about leukaemia eight years ago, to now supporting other blood cancer patients and campaigning for change on a full-time basis. It was an accidental journey that I had no control over to begin with, but one that has shaped and rewritten my life.

You can find out more about my story and the Spot Leukaemia campaign at the following link: www.leukaemiacare.org.uk/spot-leukaemia or simply search #SpotLeukaemia on social media.

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