The day my life changed - I contracted a terminal disease through teaching

3rd September 2010 at 01:00
Exposure to asbestos in schools years ago probably caused the cancer that could kill her

I started teaching French and German in 1974 and taught at about 12 schools during my career. Until my diagnosis in June 2008, I had not heard of mesothelioma (a cancer caused by exposure to asbestos).

It is notoriously difficult to track where the poisoning took place. The disease has a long incubation period, from 10 to 50 years.

My solicitor has found one cause of contamination, but there may well be more. The case is still bound up in legal wranglings so I can't say too much, but I have a four inch-thick file from one school on its asbestos history.

It is difficult to be accurate. Fibres released by asbestos can remain in the air for two to three days before they land on the floor. There have been cases where shipbuilders and electricians have been covered in dust and they haven't got the disease. But when they give their dirty clothes to their wives, who are predisposed to the condition, they get mesothelioma.

I first knew something wasn't right in January 2008. I had a cough that wouldn't go away. I had an X-ray for something unrelated and it showed a fuzzy patch on the lung - a pleural effusion - which was full of fluid and had to be drained. This is a typical symptom. It can be nothing or it can be something.

The disease is difficult to identify. The doctors can't make a clear diagnosis until they do a biopsy of the lung tissue lining.

About two weeks after my lung had been drained, my cough came back and I felt breathless. I had an operation and had to wait two agonising weeks for the lab results. When I saw the doctor, he said he had bad news. He said it was mesothelioma and there was no cure. I could have chemotherapy, but he made it clear this was a terminal diagnosis.

I was in shock. I wasn't tearful, but I was shaking. The doctors have to explain it to you more than once, because they know that the fist time you hear it the shock makes it almost impossible to take in.

I asked how long I could expect to live and the doctor just shrugged. So I looked it up on the internet - the average survival rate is six to 24 months.

I was given a referral to a world expert at Barts Hospital, London, and I heard about a clinical trial in the US, in Philadelphia. I'm only the ninth person to take part. I feel lucky and nervous. It has given me hope, but there is no guarantee of success.

I don't feel bitter towards the schools. If I was in charge of the building, I wouldn't know about asbestos either. There is now a greater awareness about its dangers, but there is still some work to do.

I would like schools to be obliged to follow stricter guidelines. It should be obligatory to have a thorough asbestos survey every year.

I don't want teachers to panic: every school should already have an asbestos register and management plan. There should be someone responsible for its management - the local authority, the head or the caretaker - but their role must be clear. The Asbestos Testing and Consultancy association (ATaC) can help with quick and easy tests to check for airborne fibres.

I have been on a steep learning curve since my diagnosis. I have met so many interesting and inspiring doctors, campaigners and researchers. They are all working so hard on this issue. It has been a privilege to get to know them and it has helped me enormously.

Carole Hagedorn, 59, taught in London and south-east England. She was talking to Hannah Frankel. For more information, visit www.mesothelioma.uk.com. If you have an experience to share, email features@tes.co.uk.

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