We frequently receive comments from our members about our work – here are a few:
My husband died of mesothelioma in May 2001. He had been a very fit, active man, regularly playing squash and badminton, cycling up to 150 miles a week and was always busy both at work and at home.
The first signs of a medical problem appeared in 1999 with difficulty in breathing, raised heartrate and fluid in the pleural cavity. Biopsies taken (9) were clear and removal of the fluid lead to a return to work and a resumption of his sporting interests which continued until January 2001. At the same time he had 3-monthly check-ups with his consultant.
In January 2001 the breathing difficulties returned – the following five months were a nightmare. He was admitted to various hospitals on five different occasion for unlinked reasons, but still no diagnosis. Although mesothelioma had been mentioned as a possibility no firm diagnosis was made until April.
Then followed a period of home nursing when, alone, I was coping with medication, oxygen cylinders, panic attacks, telephone calls, medical personnel, visitors, personal care, running the house etc. The fear of not knowing what was wrong with him (for more than two years) gave way to a total feeling of isolation and ignorance. I had no-one to confer with and no-one to ask for advice. We had been given no information about the disease other than the prognosis and in fact I had the feeling that living in a non-industrial area, no one knew very much about it. It was only after my husband’s death that I had time to look at information channels such as the internet and found out so much more. However, this did not prevent a period of depression and an overwhelming feeling of isolation.
While my husband was in hospice my family started to make enquiries about his asbestos exposure 40 years previously. As a result I became involved with the Asbestos Support Group, joining them on their second meeting. Here at last was a chance to exchange information and experiences with others in the same situation – a whole new world! I began to put things into perspective again.
In 2005, as a result of my connection in the south west, I helped to set up a second Asbestos Support Group in Exeter. After the first meeting of this new group, where talking continued non-stop, one of the members said:
“Thank you for giving me the chance to talk to someone who really understands where I’m coming from about things which I cannot discuss and talk about with my family”.
In 1941 Dr Macindoe, a plastic surgeon, who was responsible for the medical needs of Royal Air Force crews who were serverely burnt whilst in action, soon realised that as long term convalescent patients suffering psychological, physical and social problems, they would require long term rehabilitation to restore their self-confidence and other special needs.
To which end, and with great help from the townsfolk, he developed a recreational and social club, known as the “THE GUINEA PIG CLUB” which is still active todate.
The effect of this environment had a dramatic effect on the patients future well-being, in confidence, social associations, and aid in medical recuperation etc.
As asbestos victims, which include widows, wives, families, carers, all in our various ways suffer many similar concerns and problems:
LOSS OF ONES PERSONAL INDEPENDENCE
HEALTH AND MEDICAL CONCERNS
SOCIAL AND DEPENDANCE NEEDS
INABILITY TO ACHIEVE GENERAL TASKS
UNSURE FUTURE. POSSIBLE LONELINESS
TO NAME ONLY A FEW MENTAL AND PHYSICAL AILMENT CONNECTIONS
We are fortunate to have our own form of “GUINEA PIG CLUB” in the South West, where we can meet informally with persons in the same circumstances. Chat over problems, socialise and know you are not alone, discuss how others cope, and future hopes, receive medical advice. Obtain other advice specific to your needs. Discuss with other experiences, and hopes which may appear.
With thanks to all originators of:
The Swindon and South West Asbestos Group
For more information please e-mail us with your full name and postal address. Send your e-mail to