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Release Date: 17th April 2003
Undergoing treatment for leukaemia can be a lonely experience. Whether you are in an isolation ward of a hospital having had chemotherapy or are at home finding it hard to sleep, many patients go through times of intense worry and isolation when they feel very much alone.
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With the launch of a new video, 'Talking about Leukaemia', Leukaemia Research hopes to help patients through these difficult times. The video which is accompanied by a booklet features people talking candidly about their diagnosis and treatment. It is designed to help patients feel less alone and less like they are the first person to feel this way.
'Talking About Leukaemia' has been a two-year labour of love by the friends and family of Rachel Howard who died of leukaemia in April 2000. Rachel had the idea when she herself was in isolation in hospital.
She wanted to make a video for patients which was designed by the patients themselves - where they could share their fears, worries, anger and even some of the funny moments. She discussed this idea with her London-based tv producer friend Sophie Chalk who then went on to make the video after Rachels death.
Sophie explains: "Rachel had been in isolation at Kings College Hospital for a number of weeks waiting for her blood counts to come up. She realised that if she hadn't made really good friends there among the patients this would have been a very difficult time because of the isolation and loneliness.
"She felt lucky because there were other people her age on the ward who she could relate to - two of whom are featured in the video. They shared fears and worries with each other and this took a weight off her mind - she said it helped her know she wasn't alone and wasn't going mad."
Having worked in television and film production years before in Glasgow Rachel came up with the idea of a video for patients.
"Our goal was that every patient diagnosed in the UK with leukaemia would receive a video free of charge and thus possibly feel less alone," says Sophie, "and I am delighted that we have now made that wish a reality. We came to Leukaemia Research Fund because when Rachel was first diagnosed it was the LRF leaflets she was given free of charge."
'Talking About Leukaemia' was launched at the Leukaemia Research Fund Annual Conference in London on Saturday 26th April 2003.
The video is divided into eight sections each of several minutes duration covering diagnosis, being in hospital, relationships, managing life and loneliness. The patients have been drawn from across the country. They are: Shahed Shah - South London; Sean Holden - Nr Fleet, Hampshire; Marianne Griffin - Nr Telford; Shropshire; Patrick Doyle - Middlesex; Claire Bainbridge - Brighton; Karen Barker - Fleetwood; Rani Samara - Morden, Surrey; and Mark Rowlands - Merthyr Tydfil, Wales.
Rachel was diagnosed with AML in 1998 aged 33. She was treated at Kings College Hospital in London - undergoing bouts of chemotherapy and ultimately a non-related bone marrow transplant. She died in April 2000.
She had been living on the island of St Marten in the Caribbean for the preceding few years before diagnosis. While there she restored boats and was heavily involved in the sailing community.
Rachel had a first class degree from University of Southampton in Transportation and Logistics and had hoped to use this to work in aid and development work. She had spent a large part of her childhood in Nigeria and this had led to a love of Africa and interest in the developing world.
Acute myeloid leukaemia is diagnosed in about 2,000 people every year, including about 50 children. The illness is treated with chemotherapy and where appropriate a bone marrow transplant. Cancers of the blood (leukaemia, lymphoma, myeloma) are the most common cause of cancer death in people aged 1-34. Almost 300 young people (15-34) are diagnosed with leukaemia each year in the UK, about 1,200 with a blood cancer (including leukaemia).
'Talking about Leukaemia' is available free of charge from Leukaemia Research Fund, 43 Great Ormond Street, London, WC1N 3JJ tel: 020 7405 0101, email: info@lrf.org.uk
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