Survivor Insight Series | Lyn J.
- Stories from Survivors
- May 16, 2012
Lyn J. has been a mesothelioma survivor for around 5 years. However, she is no stranger to what mesothelioma can do. She saw her father succumb to the disease 18 years earlier.
We would like to thank her for sharing her insight on the trials she has had to go through. We are withholding her last name over privacy concerns. We always appreciate hearing from survivors, and if you are interested in sharing your story, contact us at firstname.lastname@example.org.
What were the events that led up to your diagnosis?
Back in early summer 2007 I was on holiday with my husband in our motor-home. We were in Provence and I was suffering with a very slight cough. I then had a bad bout of wheeziness and spent the afternoon resting. I thought I was suffering from hay-fever. When I returned home to England I went to the doctor. We both thought it might be hay-fever, he gave me piriton but decided to send me for an xray.
I went along to my local hospital for the xray, afterwards the radiographer asked when I was seeing my general practitioner (GP) , the following week I said. She said the GP would have the results the next day! I didn’t really give this a thought.
A day or two later I was at my local railway station waiting for a train to London for work reasons. I got an urgent message on my mobile that I was to go home as one of the senior GPs needed to speak to me. That was a bit worrying!
To cut a long story short I was told my xray was abnormal and I would need a biopsy. I wondered if it could be mesothelioma as my father had died of peritoneal mesothelioma nearly 20 years before.
Rather than wait for the NHS to provide the biopsy I asked a benevolent fund I belong to if they would fund it. Luckily they did and I had the biopsy done immediately (the NHS would have provided this a few days later as it turned out!).
A day or two later we were given the bad news and an appointment the next day to see an oncologist at my local hospital. It was late June, I was a few months short of my 54th birthday.
My oncologist turned out to be wonderful and caring. NICE hadn’t yet authorized Alimta for mesothelioma so he sent me off to London to see if I was suitable for the MARS trial. Whilst we waited for appointments we went off in our motorhome again!! After a few months it seemed I wasn’t suitable for the trial so I went back to my local oncologist, by then NICE had authorised alimta so it was agreed I would start chemo (Alimta + Cisplatin) in the September.
At no stage did I want to know my prognosis.
Was your mesothelioma caused by asbestos? If so, can you remember coming in contact with asbestos?
My mesothelioma was caused by my father’s work clothes. He had been a lagger and worked with asbestos all through my childhood. He died of mesothelioma in 1989.
Where did you turn to for information?
I searched the internet for info. How depressing was that.
What was your reaction to hearing your diagnosis was cancer?
I was in pieces at first and had a couple of sessions of counseling which helped me enormously.
What has been your family’s reaction?
I am married with two grown up children, both married. I am grateful they have partners to support them. My family has been wonderful.
What treatment options were you offered and what did you choose to do?
I was offered Alimta + Cisplatin. I can’t lie, this is a hard regime. After four sessions I had a scan, my oncologist thought he could see, perhaps, a slight reduction so he let me go on and have the next two. I really didn’t want to do the sixth, but a good friend suggested that I’d got that far and couldn’t really give up on the last one. So I went along, they got the alimta in and started on the cisplatin, I then had an allergic reaction. So they stopped it.
After the scan my oncologist couldn’t believe how much it had shrunk!
This was January 2008. We went on holiday! A few months later I started suffering bad pains around the right lung so I had another CT scan. The mesothelioma was still shrinking!
My oncologist has been wonderful. the important thing is quality of life and how I want to manage my disease.
Did you travel to a specialty center?
I had all my chemotherapy done at my local hospital. I have looked at various other treatments at other centres but none have been suitable. A couple of years ago I did have a week on a Sorafenib trial but the side affects were too much for me.
It’s May 2012, I now have two grandsons, and my last scan was stable. Who knows what the next one will bring. I know that one day I’ll probably have to go through Alimta again.
What message would you like to send to the mesothelioma community? (newly diagnosed or survivors?)
Do what’s right for you. Don’t look at statistics, we’re individuals not statistics. Make the most of your time and look after yourself. I never look ahead more than a few weeks.
Ben Leer is an outreach coordinator with The Mesothelioma Center. He works toward increasing education and awareness of mesothelioma and other asbestos-related diseases. Part of Ben's job is to reach out and engage with patients, caregivers and family members on our online communities.