Ben Leer spoke with Mavis N. for this post contributing to The Mesothelioma Center’s Survivor Insight Series. Mavis is a survivor and fighter of pleural mesothelioma. Mavis joins us today to share her story. Her last name is being withheld over privacy concerns.
What were the events that led up to your diagnosis?
My arms went numb and I burnt myself with an iron and didn’t feel it. I went to Spain for a holiday in January 2009. When I came back in March I found it more and more difficult to breathe, so I was sent for an X-ray and they saw the fluid in my left lung. They rushed me into hospital and drained the fluid and tested it.
When were you diagnosed?
June 4, 2009.
What were your biggest questions after being diagnosed?
How long have I got to live? (3 months was the answer).
Have you read Steven J. Gould’s “The Median Isn’t the Message?” Did additional information make you feel hopeless or do you feel it empowered you?
I haven’t read the book but I will. I’m a positive person and I wrote my own book, and I talk and do interviews where ever possible. I’ve talked to Meridian Television News, Women’s Magazine and local papers, and I’m going back to IATP next year to talk at the HSA conference to raise awareness. So yes, additional information helps me.
Was your mesothelioma caused by asbestos? Can you remember coming in contact with asbestos?
I washed my husband’s clothes when I was first married and he worked with asbestos in Chatham Dockyard.
In the same way that smoking endangers everyone in the household, asbestos does too. Most of the patients I’ve encountered have only had secondary exposure to asbestos. Did you have any knowledge of the health issues related to asbestos? And did you know that it could not only affect your husband, but you and your children as well?
We didn’t know at the time but gradually news reports started telling us the dangers. Ray lost so many of his friends as there is a pocket of mesothelioma in the Medway towns due to the dockyard.
We didn’t realize our children were in danger, but then Ray left the Dockyard to work at British Uralite. But by the time the children were born he was in other employment (milkman, baker etc.) chasing a better wage all the time.
Where did you turn to for information?
First I read the Macmillan booklets and then I searched Facebook and found the Warriors. I also Googled for more information and I never stopped finding out info.
What was your reaction to hearing your diagnosis with cancer?
Shocked, but then I said I will beat this.
What has been your family’s reaction?
Shock but they are so behind me and read my blog everyday so they know what I’m thinking.
A cancer diagnosis can be difficult to discuss. We posted some tips on what to say when your friend or loved one tells you they have cancer.
What were your treatment options?
Talc Op, wound radiation, then chemotherapy — Cisplatin and Alimta — which caused good shrinkage until March this year. But now it’s growing back and I have to have second line chemo. I tried to get into the ADAM Trial but I didn’t have a required protein in my tumor. Now I’m going into the NGR015 Randomized Double-blind Phase III study of NGR-hTHF with Vinorelbine as a back up. This will start in two weeks.
What message would you like to send to the community?
I would like to say that when you are diagnosed don’t listen to the doom and gloom. Fight with all your might. Don’t worry if you feel selfish, as you are important. So if you want something then get it — do it.
Also chase all the trials. There may be one for you. Also chase all appointments don’t sit back. If you feel your results should be there by now, chase if your appointment is late.
But above all try and live life as I do. I have still gone camping whenever I can in my motor home. Life is wonderful, live it to the full.
We would like to thank Mavis for sharing her experience.
Survivor Insight is one of the most requested and visited sections of our site. It helps build community, and allows others to learn from others. Are you strong enough to share your story? Reach out to us at firstname.lastname@example.org.