Jan’s Journey: Continuing the Battle with Mesothelioma Part 2
- Stories from Survivors
- Sept. 10, 2012
Loved hearing from Jan last week? Here is the continuation of the interview. If you missed last week, here is Part 1.
What do you think about the mesothelioma community since joining Facebook?
I think the mesothelioma community on Facebook is amazing. People are so open about what is happening with treatments, how they feel and how they cope when they are having what I call a “Nothing Day.” Publishing this information to Facebook is great because it’s truly hitting an audience who needs it.
No more shifting through loads of information on the Internet. It is all in one place, or nearly one place. A lot of people spend a lot of time to ensure the information is there for us.
I find the online mesothelioma groups really helpful. For once you don’t feel alone because you are among people who know exactly how you feel. The fear, anxiety, and stress is all there for you to read or contribute to. It really is a good tool for communicating and helping others with this cancer. There are a few downfalls to it. Sometimes you end up with information overload.
Only joining Facebook a month ago, I wonder how I managed before!
What benefits have you found with using the internet?
It is certainly good for collecting information and helps towards making decisions on what you do next. More importantly there are websites like Asbestos.com which is always up to date with current treatments, questions, doctors that specialize in mesothelioma and more. I said before, in 2004 mesothelioma had only a couple of pages on Google. These days there are hundreds of articles. I have stopped Googling and started Facebooking, it is so much easier!
I wonder what we did before the Internet came along? I know I would be lost without it. Anything you need to know is at your fingertips. The only problem is there can be too many leading articles but when you open them they are the same as the one you opened a couple of pages back. Duplication is a big problem.
The Internet did help me in other ways. I was able to create a blog which through it I found quite a lot of friends who were and are in the same position as myself. I found other blogs written by survivors or carers and I didn’t feel alone anymore. The blog helped me get things off my chest. Now of course I can do that on Facebook.
What message would you like to send to the mesothelioma community? (Newly diagnosed or survivors?)
I have become complacent believing I will always have another day or another year. I keep procrastinating on things that are important. I want to make a keepsake slideshow of my married years and still haven’t done it. The one thing I always wanted to do was write a book and finally this year I have sat down and wrote one. No, it isn’t on mesothelioma which shocked my friends but a fantasy, whether I will ever get it published is another thing!
Keep positive, as I said earlier. Terminal is just a word. It doesn’t change your body so much as it does your mind. You have to learn to live with this cancer. Fight it with everything you can but you have to learn to pace yourself.
No longer should we hear you only have a few months, unless of course the mesothelioma is so advanced, but today they are diagnosing mesothelioma a lot earlier.
If you don’t have faith in your oncologist or chest physician change them, you will be with them for a long time.
Ask your oncologist for advice. You can also ask for referrals to see other mesothelioma specialists who are conducting trials or may offer you alternative treatments.
You will think that your life revolves around hospitals at first, but it will settle after your treatment into 3 monthly cycles of scans.
All those things you wish to do, if you can, do them. But do them in your own time, not because you think you will be dead in a few months.
Read good articles that give you a lift. Don’t dwell on the statistics, they aren’t accurate because some doctors don’t keep them up-to-date or share information.
Don’t hide your head in the sand. This is your life and your body. If you want time to think about treatments, take that time. You have to want to put yourself through the treatments. Don’t be forced into them. Your family and friends will be hurting too. They will not want you to die and will want you to do everything possible to stay alive. Please don’t ask them to make your decision on what to do. Talk with them. Discuss the options but don’t force them to say, “Yes do this” or “No don’t do that.” They will feel guilty if anything goes wrong.
Keep active for as long as possible, the rest of your body is still healthy.
We want to send our gratitude to Jan for telling her story in an effort to help others affected by mesothelioma. It is because of stories like hers we can all better understand the impact of this disease. If you would like to speak out too, please feel free to contact us at firstname.lastname@example.org, comment below or on Facebook.
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.