A woman who contracted asbestos-related cancer from washing her husband’s overalls, has spoken out about her devastating diagnosis and how her local patient support group has been a “beacon of hope” in her darkest days.

Irene Spence, from Lowestoft, was diagnosed with secondary mesothelioma in April 2019. For years, she had washed her marine engineer husband’s work clothes at the end of each day. It’s thought that long-term exposure to asbestos dust on his overalls caused her cancer.

Following her diagnosis, Irene contacted specialist Solicitor, Phoebe Osborne, who Chairs the East of England Asbestos Patient Support Group. She put Irene in touch with other families located across the UK, including those who have undergone surgery, chemotherapy, and immunotherapy.

Irene’s views of Patient Support Groups:

Before starting chemotherapy, I was in a state of shock and our whole family was devastated, especially my husband. It was not an illness any of my friends or family had heard about. After meeting my solicitor, Phoebe Osborne, I quickly began to realise that there were many other women in my position who had been exposed to asbestos secondarily through washing their loved one’s clothes and there is support out there.

The group of people I’ve been introduced to are a beacon of hope. I’ve been overwhelmed with the support and kindness shown by others who understand precisely what I am going through including anxiety and symptom control.

Before my diagnosis and subsequent chemotherapy, I was anxious about the future but now I recognise many patients in my position are doing very well with their treatment and there are future treatment options available to mesothelioma patients, either via the NHS or privately, something I may not have necessarily heard about if I did not attend a support group. “I feel proud to be a ‘Mesowarrior’ and now offer support to others.

The East of England Asbestos Patient Support Group was set up in 2021 by Brian Wallis, a Mesothelioma UK Ambassador, whose wife died from asbestosis in 2013. Since then, he has set up a number of support groups across the East of England region, to improve the support available for those newly diagnosed with mesothelioma and other asbestos diseases. He also continues to raise significant funds for a Mesothelioma UK specialist nurse to work in Suffolk and Norfolk.

The closest mesothelioma UK specialist nurse is currently based in Cambridgeshire, which is a very long journey for many based in rural and coastal parts of Suffolk and Norfolk.

Brian and his volunteers recognise the importance of bringing together families from coastal and rural areas of Norfolk and Suffolk to improve access to information and support, regardless of where they are based.

Despite the pandemic, the East of England Asbestos Patient Support Group has continued to provide support to patients and families via MS teams and Zoom technology. As the COVID-19 pandemic restrictions are lifted, face-to-face meetings are gradually returning in locations across the region. Safeguards are being taken to ensure the groups can meet safely, with many events taking place outside – with the most recent trip taking place at Southwold Beach.

Phoebe Osborne, Chair of EEA PSG comments:

Irene’s story is testament to the benefits of support groups. I’ve witnessed, first-hand, the benefits to these patients and their families following a shocking diagnosis. The group is free to attend and many studies have shown that regularly attending a local support group can improve quality of life for people dealing with a cancer diagnosis.

My main priority is to ensure all patients and their families are supported on a holistic level following what is often a shocking terminal diagnosis. Families need hope and support from experts who can signpost them to the appropriate professionals, including occupational therapists, hospices, and the national charity Mesothelioma UK. On a personal level, it has also been wonderful to watch friendships blossom and develop over the years

The East of England Asbestos Patient Support Group organises regular speakers covering important issues like the practicalities of living well with mesothelioma; how to perform seated exercises; tips on managing breathlessness and symptom control; and hospice care. As well as organising days out, the group enjoy spending time together over a cup of tea or coffee, having a chat and focusing on the positives, celebrating the everyday and making memories now and into the future.

It offers support to everyone at whatever stage they are in their mesothelioma journey and welcomes all clients, including those who have no legal claim and those who have settled their claim elsewhere.

For further information about joining one of the local groups, please telephone 01223 665 653 or email info@eastofenglandasbestos.co.uk.