North Norfolk woman speaks out about life with incurable cancer after 21 years

Penny Barker
Penny Barker

A woman from North Norfolk is speaking out about life with an incurable blood cancer in the wake of Blood Cancer Awareness Month.

Penny Barker has been living with Chronic Lymphocytic Leukaemia (CLL), which is a cancer of a type of white blood cell called B lymphocyte, for around 21 years.

CLL patients are put at an increased risk of infection and other diseases as CLL cells can accumulate in bone marrow, blood, and lymph nodes, causing organ enlargement, tiredness, weight loss, night sweats and fever.

Ms Barker said: “My diagnosis of CLL, the most common form of leukaemia in adults in the UK, came after I discovered swollen lymph nodes in my neck whilst rubbing in suncream on holiday in India.

“CLL can be a very unpredictable blood cancer with some patients not needing treatment for many years, yet I needed treatment straight away and underwent a stem cell transplant and total body radiation immediately following my diagnosis.”

A third of people with CLL go to their doctor feeling unwell, but the majority of those with the incurable blood cancer are diagnosed by chance often from a routine blood test taken for another reason.

However, half of patients will not require treatment after 10 years, while the other half’s disease will have progressed, leading to them requiring medical aid.

Ms Barker added: “Once you notice these lumps and bumps then you know it is time to seek action. A lot of people over the age of 60 are diagnosed with CLL, but many of them will not need treatment. They will have their blood checked and we be on what we call watch and wait.”

After treatment patients return to being monitored until progression leads to further treatments.

CLL Support Association (CLLSA) is the only UK charity dedicated to providing education and support to help those living with CLL. To visit their website go to www.cllsupport.org.uk/home or find them on Facebook and Twitter.