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Mesothelioma Study Day - 25th May 2005
Kerry Macnish, Sue Newby and
Debbie Keetch
Evaluation Responses
- We found your talk very interesting also the breathing techniques which we will practice. They teach this technique in yoga as was mentioned. Thank you very much, the talk was appreciated.
- Thank you for a very interesting and informative morning. We appreciate your help. Thank you.
- A very, very interesting morning. Very informative, especially on breathing awareness and technique. Also to hear other people's problems and how they cope. Thank you for giving us your time to talk to us.
- Very useful and practical meeting, nice to know we are not alone. It was a pleasure to meet others in the same circumstances and your advice was quite helpful. Thank you for coming.
- A very valuable workshop with more far reaching benefits than the forum in which we attended today. I attended with my father who has asbestosis but felt the techniques which were discussed would be helpful to many. My mother for example, who suffers from emphysema, my husband, a long term asthmatic whose symptoms have not been prevalent since childhood. I found the session very reassuring and was pleased this was a technique that could be used on a daily basis. The nurses were very caring and very knowledgable. I am very glad I attended. Thank you.
- I found the meeting helpful and easy to follow. The questions on breathing were very useful and I will practise diligently.
- Certainly not a 'waste of time', most interesting throughout the talk. Breathing will help us to relax and at the same time hopefully be able to have more available energy. Many thanks to all involved in the help they provided.
- We found this very useful. Relaxation is an asset, but the only downfall is when my husband relaxes he goes to sleep!
- A very worthwhile talk and discussion. The explanation of how to breathe 'out' is not a known feature. Hearing other person's problems and how they deal with them is enlightening. Apparent 'help' is the major source lacking as to where to get advice from similar asbestosis related sufferers. This get together as a group has been excellent in getting people to talk. Specialist nurses are a welcome development. Well done for all the advice and time given by the nurses.
- We both found the talk very interesting and have learned a lot more, as we didn't know a lot about the illness. The techniques will be very useful and the demonstration was well done. Thank you very much for your time.
- The help and advice you gave us was very informative. The breathing techniques were very helpful. Thank you for your time.
- Very useful.
- We were very impressed with advice given, especially as regards breathing techniques. Also remedies which help with breathing. The overall advice will be a great help to us.
- We found the talk very educational and helpful. To get together and share ideas I think everybody will go home with a few tips to enhance their lifestyle.
- The recent 'workshop' in Swindon was most informative, well presented & extremely worthwhile. Everyone involved in organising & conducting the programme, are congratulated.
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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".
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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:
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
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For more information please e-mail us with your
full name and postal address: info@asbestosgroup.co.uk