My Story: Raising awareness of blood cancer

Erica Farmer, Bloodwise Ambassador shares her story of being diagnosed with chronic lymphocytic leukaemia and how she’s using her journey to raise awareness of blood cancer.

I was diagnosed with chronic lymphocytic leukaemia (CLL) in December 2003. I had had a minor gynaecological operation and felt extremely tired and really unwell for too long afterwards. I had blood tests and the gynaecologist said to me ‘I have never had to tell anyone this before but you have chronic lymphocytic leukaemia and I cannot do anything more for you, you had better see your GP’ and I was outside his office door before I knew it.

I was just in complete shock. The only times I had heard about leukaemia before that was on television when someone was dying from it. All I could see was the word “chronic” with great big zig-zags round it.

I got home in a complete daze with the world going on around me and my mind making lists of how to put my affairs in order and I just burst into tears when I saw my husband. I looked on the internet and in those days medical sites gave someone with CLL a life expectancy of 5–10 years, and I thought if that is what the sites said it must be right.

My husband and I saw my GP but she could not tell me much apart from ordering more blood tests, but she did refer me to what now is now the Bloodwise web site. That was the best thing she could have done, There I found helpful, practical information on CLL, information on support options, the research Bloodwise funds, current types of treatment and that was so reassuring. I felt I was not the only one in the world with CLL and there was Bloodwise that would give me support.

After further blood tests, my haematology consultant put me on ‘watch and wait’ — quarterly blood tests to monitor my CLL to see when treatment should begin. This is common for CLL patients, with many on “watch and wait” for several years before it is appropriate to begin treatment. Again Bloodwise came to the rescue with its informative leaflet explaining what was happening.

Now I really want to give something back to Bloodwise and others with blood cancer and their families as Bloodwise has given so much to me.

This month, Bloodwise launched their Ambassador programme, which provides an opportunity for people directly affected by blood cancer to get involved in Bloodwise’s work. This includes raising awareness of blood cancer and issues affecting patients to reviewing patient information to make sure it’s patient friendly. I was extremely honoured to have been asked to be a Bloodwise Ambassador and it is an exciting responsibility which I take very seriously.

I have been very fortunate to have been on watch and wait for over 12 years. Not everyone is so lucky — blood cancer is the third biggest cancer killer and the fifth most common type of cancer in the UK.

Despite these statistics, public awareness about blood cancer and its signs and symptoms is very low. For me, changing this is what being a Bloodwise Ambassador is all about — I want to raise awareness of blood cancer and Bloodwise, and make sure that the 230,000 others currently living with a blood cancer have a voice.

Although I get fatigue my current health and the way I manage it means I am able to give something back to Bloodwise, who have given so much to me. I think people are Bloodwise ambassadors in different ways — some people are brilliant, innovative fundraisers, other people have sporting prowess. I think I am a people person, and I want to use this to represent Bloodwise, people with blood cancers and their families. That way, I can fly the flag for Bloodwise, and raise awareness of blood cancer, the issues faced by people affected, and everything being done to beat it.

To find out more about the work Bloodwise are doing during Blood Cancer Awareness Month, go to www.bloodwise.org.uk/BCAM


Erica Farmer, Bloodwise Ambassador

Erica Farmer, 66, was diagnosed with chronic lymphocytic leukaemia, a slowly developing type of blood cancer, in 2003.

Erica’s haematology consultant put her on a programme called “watch and wait”, with blood tests every three months to monitor if the leukaemia was progressing. Chronic lymphocytic leukaemia can develop very slowly over many years and patients normally only start treatment when the leukaemia has advanced to a certain stage. Some patients may never undergo treatment, and Erica is still on “watch and wait” today. She marked Blood Cancer Awareness Month this September by becoming an ambassador for Bloodwise, the UK’s specialist blood cancer charity.

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