Survivor Insight Series | Louise C.
Louise C. participated in our Asbestos Awareness Week events on Facebook, and was inspired to share her story with us and the community. Louise lost her father in April of 2010 to mesothelioma. Read on as she shares her family’s journey with her father’s diagnosis. We are withholding her last name over privacy concerns.
What were the events that led up to your father’s diagnosis?
My father had a chest cold over Christmas 2008. I got him to go the see the GP in January, and they sent him for an X-ray. Then they admitted him into Harlow Hospital for a chest drain.
When was your father finally diagnosed?
After being in Harlow, my father was sent to the London Chest Hospital for a biopsy. After coming around from the operation, he was first told everything looked ok and he could go home. When I arrived he told me that someone had come to see him and told him he has “something ending in lioma” and he had an appointment with Harlow Hospital again.
What were your biggest questions after the diagnosis?
After going home and searching the net, the main questions were:
What kind of treatment is there?
What should we do now?
What was the reaction to hearing his diagnosis was cancer?
To be honest, hearing that it was cancer was not the worst thing we heard, knowing that a lot of cancer can be treated or even cured now.
What was the rest of your family’s reaction?
The family all rallied around dad. Going to hospital visits seemed to help, as we asked the questions that dad had forgotten. It also saved dad going through it all again when he got home.
Was your father’s mesothelioma caused by asbestos? If so, can you remember him coming in contact with asbestos?
My dad worked as a plumber’s mate during the 60’s. He also worked in demolition around East London where he grew up. During the 50’s & 60’s a South African company imported asbestos up Barking Creek. The small asbestos fibers would blow for miles around the local area. So I guess my dad could have come into contact with asbestos in many ways throughout his life.
Where did you turn to for information?
We found most of the information we needed from the net. When dad had his initial visit at Harlow Hospital, the doctor we saw actually told us he did not know much about mesothelioma and the NHS are not planning on spending much money on research as they say it will eradicate itself by the year 2015, due to the fact that asbestos is not being used anymore!
(*Note: Asbestos is not yet banned worldwide and is thought to have a resurgence of people affected in the years to come.)
What treatment options were you offered and what did you choose to do?
My dad was told at Harlow Hospital that they can’t do anything and they referred him to Papworth Hospital in Cambridge. He was told at Papworth, very abruptly, that there was nothing they can do and suggested he go home and do his paperwork! His estimated life expectancy was two months!
We all talked to my dad, (who by the way up until this point was a very fit and physically strong and mentally strong person), and agreed to look if we could find any clinical trials that he could take part in.
Did you travel to a specialty center?
After searching the web we found Dr. Jeremy Steele who works at Barts.
Dr. Steel is well known in the UK as a specialist in lung cancer and is internationally recognized for his research into malignant mesothelioma. He is also on the board of directors of the International Mesothelioma Group based in Chicago.
Dr. Steele agreed to see my dad and to put him on a clinical trial program. The program included radiotherapy then chemo, Cisplatin and Permatrex together. My dad had one lot of six chemo treatments, traveling to Barts in London each time. This prolonged his life for another year.
We also gained a great deal of help from the MacMillian nurses working at Barts.
What have you found to be most helpful in dealing with your father’s diagnosis?
Don’t give up and do your own research on the net. We would never have found Dr. Steele otherwise.
We also found the MacMillian nurses working at Barts to be a great deal of help. They helped to fill out claim forms.
Our local hospice was a fantastic help. They helped with virtually everything, and if they can’t help, they will send you in the right direction.
What message would you like to send to the mesothelioma community?
D.O.B. 27th July, 1945
Died 10th April, 2010
Greatly loved husband, brother, dad and grandad. He caught this horrible thing just from work very hard. Sometimes life is just unfair.
During the last year, I have been challenging the local primary school that my children attend to be more open regarding what asbestos is in the building. After surveyors started going through the plans of the school, what little asbestos was present the governors are arranging to remove ASAP.
This is fantastic news, let’s hope that the message is getting out there, that asbestos KILLS.
We would like to thank Louise for sharing her personal journey with mesothelioma with all of us. As always, we hope her story has brought hope and inspiration to your lives. If you would like to share your story with the mesothelioma community, feel free to contact our team at firstname.lastname@example.org, connect with us on Facebook, or Twitter.