Jan’s Journey: An Ongoing Battle with Mesothelioma
- Stories from Survivors
- Sept. 1, 2011
Jan truly is a fighter. She has been battling mesothelioma for more than seven years.
She believes secondary exposure to asbestos is the reason for her diagnosis. Her father worked for Bakelite Limited, a company that manufactured plastics containing the deadly mineral.
Asbestos was used in these early forms of plastic to strengthen and enhance the materials.
However, when those plastics snapped, they likely emitted asbestos. Jan’s blog and website serve as a great resource for survivors and offers information on the disease.
She has agreed to answer a few questions about her experience with mesothelioma.
Tell me about your diagnosis.
I had a hard time getting diagnosed. Having had endometriosis from my 20s didn’t help toward getting to the bottom of what was actually going on. At times I thought my lung was stuck to my ribs and for some strange reason this occurred every three months throughout 2000 till 2004 where it changed and stayed the entire time. As the time passed, the symptoms got continually worse, from just feeling like my lung was sticking to my ribs every time I took a breath to terrible back, neck and chest pain.
You mentioned you experienced symptoms from 2000 till 2004. When did the doctors diagnose you with mesothelioma?
I was told on August 26, 2004, that I had mesothelioma. This was after an operation on August 5, 2004.
What was the cause of your mesothelioma? Were you exposed to asbestos? Do you know where it could have come from?
My father worked with asbestos, and I’m 99.9 percent sure it came from his overalls.
Where did you father work when he came in contact with asbestos?
My father worked with asbestos at Bakerlite Limited.
Where did you do most of your research on mesothelioma?
The internet. In the early days (2004), there wasn’t that much out there but now you can find everything you need, if you have the patience.
Did you find internet sources reliable and user friendly?
There are some excellent sites, like yours, and there are some terrible sites. You always have to remain realistic. If a site you come across guarantees a certain product will cure you, stay away. Many sites lure you in with information but end up being solicitors with nothing to add to what you have already learned.
Were you able to find other people with a similar diagnosis?
In 2004 it was difficult to find another woman with this. None of the cancer forums had a section on mesothelioma at that time. I started leaving messages on the Chris Knighton Mesothelioma site and questions on Cancer UK, etc., and finally I made contact with a few people. Then in 2008 I created my website jansjourney to help others and following that I started my blog jansmeso. My aim was to help others create meso circles. A meso circle is having people you contact regularly and pass information back and forth, or just have a good rant and rave if you need to let out all those bottled up emotion. This seemed to work and I know there are various meso circles out there. Many have now tuned into Facebook and use that as a focal point for contact. I still haven’t used Facebook!
The other idea of mesocircles is, if someone contacts us and wants info on a specific treatment we can pass them to others who may have tried it, and of course we can discuss treatments. It works well for me as I have made a lot of meso friends. The hardest part is when you lose someone from your circle to the cancer, because you do become close.
What was your outlook on how you wanted to battle mesothelioma?
Back in ’04, anyone diagnosed with mesothelioma was pretty much told to go and enjoy the last few remaining months of their lives. Luckily for me, our hospital had been given Alimta for a last trial and I was accepted.
The statistics at that time gave an average of 13 months additional life, but when that comes and goes you do start to become complacent about your condition. I thought in my naïve way that I could keep buying time by having chemotherapy treatments every time I came out of remission. It doesn’t work that way unless there are more than two chemotherapies available.
You mentioned in your previous email about payouts and solicitors, did you look to go that route?
I never looked at the contacting solicitors for a claim as I was more interested in fighting the cancer than having to spend time dealing with solicitors. After visiting the USA for treatment, five years later I then thought about making a claim so I could set a fund up. I left it too late, my father had died along with all the information I needed for a claim.
What advice would you give to someone who has just received a diagnosis of mesothelioma?
How you receive treatment and advice is important from your specialist. Many still believe you aren’t worth investing their time in because you will eventually die from mesothelioma. If your specialist tells you quality is better than quantity find another one if he doesn’t give a valid explanation as to why.
There are many treatments out there that can give you years. Read as many personal blogs of other sufferers, go to sites like this and read up on current treatments. When you visit your specialist, talk about what is on offer, not just in your local hospital but around the country or even abroad.
Discuss all the options from doing nothing to having surgery.
Carry on with your life as normally as you possibly can. It is difficult, especially that first year, but thankfully we have moved on from when I was diagnosed and there is a lot of help and advice out there.
Keeping positive is hard but important, there will be days where you want to put your head in the sand. Find someone to confide in or make contact with another sufferer. Not all the forums are great because you can become depressed by them. You don’t want to read about others dying you want to read about people fighting the disease.
I have also being lucky because I have been able to keep my job right through this process. I worked from home while going through chemo regimes, after surgery, etc. And if I don’t feel up to it I just don’t turn in for work. Keeping my job has kept me going. It gives me something to get up for, especially if I don’t feel 100 percent. Otherwise I would just sit around all day and waste it.
What has been your family’s reaction?
Devastated was the first reaction I took my time before I told everyone as I needed to come to terms with the cancer first. I also had to face another operation as I was filling up with blood and fluid after my surgeon had removed the tumors and having had such a rough ride the first time I wanted to focus on coming through the second operation.
My husband has been my rock, my brothers keep my normality and my best friends help keep the emotional side up.
The hardest times are having to inform them that the cancer has come out of remission, my family seem to think I can keep pulling rabbits out of a hat and find something else to keep me alive.
I have done everything possible, yet it seems every two years I come back out of remission. Now I am back on the trail for another treatment to hold back the new growth.
We would like to thank Jan for sharing her experiences with us and all mesothelioma fighters that continue to blog and reach out to the community. Read Jan’s Journey of Treatment for her mesothelioma treatment history.
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.