BETHAN Cawley’s diagnosis of Chronic Lymphocytic Leukaemia (CLL) came as a complete shock.

“I was working as a primary school teacher and noticed I had a sore throat and swollen glands in my neck but I thought I had glandular fever, so it never crossed my mind to take anyone to the hospital with me for my blood test results – I thought I'd be back in time to teach an afternoon PE lesson,” she says.

Bethan, 51, was told she would need a fine needle biopsy and further tests if anything showed up in that. A week later the lymph node was removed under local anaesthetic.

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“Trying to tell your children and parents what's happening is awful,” she says. “You try and make light of it to protect them and reassure them you're fine, but in your head, you're terrified and trying to work out what's going on.”

CLL is the most common form of leukaemia in adults. It is a cancer of a type of white blood cell called a B lymphocyte which plays a role in the immune system - this makes CLL patients at increased risk of infections and other diseases. CLL cells can accumulate in the bone marrow, blood, and lymph nodes and can cause organ enlargement, tiredness, weight loss, night sweats and fever.

Bethan, from Sunderland, was told she was in the early stages of the disease and her blood would be monitored regularly but not treated – a phase known as 'watch and wait.'

Mentally it was enormously difficult to come to terms with having incurable cancer that wouldn't be treated.

“I felt as if I was dragging a huge rain cloud with me,” says Bethan. “I had blood cancer. I felt completely overwhelmed but tried to put on a brave face. We all prayed it would be years before I'd need treatment but I felt like a ticking time bomb waiting for something to happen.”

Within nine months Bethan began to notice that she was aching all over, tired, and that lymph nodes were popping up along her collar bone, her groin, under her arms and she instinctively knew that her cancer was progressing.

Her neck became huge, and she was struggling to turn her head when driving. Bethan needed to start chemotherapy immediately at the Phoenix Chemotherapy Unit in Sunderland.

Bethan's chemotherapy treatment was a rollercoaster of emotions. “I received incredible support and care from the whole haematology team on the Phoenix Unit - from the nurses, Macmillan volunteers, the secretaries on the unit who become so familiar to you as well as the phlebotomy nurse Angela who took my bloods on a weekly basis,” she says. “They helped me to laugh on my hardest days and shared in my tears of pride and relief on my last round of chemotherapy.”

A third of people with CLL go to their doctor feeling unwell with symptoms such as swollen lymph nodes, liver or spleen enlargement, signs of anaemia, or bruising, but the majority of people with CLL are diagnosed by chance often from a routine blood test taken for another reason. Half of patients will not require treatment after ten years; while in the other half their disease will have progressed, requiring treatment. After treatment patients return to being monitored until progression leads to further treatments.

The unpredictability of the disease and fear of disease progression is particularly difficult for patients to cope with. But despite that, a recent study of CLL patients found that 62 per cent have minimal or no psychological support from healthcare professionals despite having anxiety, depression and stress.

David Innes, chairman of the CLL Support Association (CLLSA) says: “Living with a long-term incurable blood cancer presents many people with enormous physical and emotional pressures. Our research shows that 66 per cent of people with CLL are living with anxiety; 50 per cent with stress and 34 per cent with depression.

“The fear of disease progression and the unpredictability of the disease make CLL a very stressful cancer to live with. There is an urgent need for the 'whole' person to be cared for when living with cancer long-term. We urge healthcare professionals in both primary and secondary care to recognise the difficulties people with CLL face and take action to support them.”

Bethan adds: “For anyone who has recently received the shock of a CLL diagnosis my advice would be to allow yourself time to understand the disease but don't let it overwhelm you. Allow the tears, allow the grief for the life you had but know there is a different life ahead of you - a life with CLL.

“The support of those around you and a sense of humour help to get you through it. Making online buddies with CLL through charities such as the CLLSA is helpful. They understand as no one else does. You can ask advice, moan and laugh together. It really does help to have others who are sharing your journey.”