Loved hearing last week in January? Here is the rest of the interview. If you missed last week, here is Part 1.
What do you think of the mesothelioma community since joining Facebook?
I think the mesothelioma community on Facebook is amazing. People are so open about what is happening with the treatments, how they feel and how they cope when they have what I call a 'Nothing Day ". The publication of this information Facebook is great because it's really hit an audience that needs it.
No more than offset through loads of information on the Internet. It is in one place, almost a place. Many people spend a lot of time for that information is there for us.
I find mesothelioma online groups really useful. For once, you do not feel alone because you are among the people who know exactly how you feel. Fear, anxiety and stress is all there for you to read or contribute to. It is really a good communication tool and to help others to cancer. There are some downfalls to it. Sometimes you end up with information overload.
Only Facebook join it a month ago, I wonder how I before!
What advantages have you found with the help of the Internet?
It is definitely good for gathering information and help make decisions about what you do next. More importantly, there are sites like Asbestos.com which is always updated with current treatments, questions, doctors who specialize in mesothelioma and more. I said before, in 04 mesothelioma were only a few pages on Google. These days, there are hundreds of articles. I stopped and started googling Facebooking, it is so much easier!
I wonder what we did before the Internet along? I know I'd be lost without it. All you need to know is at hand. The only problem is that there may be too many of leading articles, but when you open them, they are the same as the one you opened a few pages back. Duplication is a big problem.
The Internet helped me in other ways. I am able to create a blog that through it I find quite a lot of friends that have been and are in the same position as me. I found other blogs written by survivors or caregivers and I no longer felt alone me. The blog helped me get things off my chest. Now of course, I can do it on Facebook.
What message would you send to the mesothelioma community? (Newly diagnosed or survivors?)
I became complacent believing that I will always be another day or another year. I continue to procrastinate on things that are important. I want to make a slideshow remembering my years of marriage and still have not. The one thing I always wanted to do was write a book and finally this year I sat down and wrote one. No, it's not about mesothelioma that shocked my friends, but a fantasy, if I ever get it published is another thing!
Keep positive, as I said earlier. Terminal is just a word. It does not change your body so much as it does your mind. You must learn to live with this cancer. Beat it with all you can, but you need to learn at your own pace.
should not hear us you only have a few months unless of course mesothelioma is so advanced, but they are today mesothelioma diagnosis much earlier.
If you do not have faith in your oncologist or chest to change, 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 are conducting trials or can offer alternative treatments.
You think your life revolves around hospitals at first, but it will settle after treatment scans in 3 monthly cycles.
All these things you want to do, if you can, let them. But do it in your own time, not because you think you'll be dead in a few months.
Read good articles that give you a lift. Do not dwell on statistics, they are not accurate because some doctors do not take the update or share information.
Do not 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 must want to put you in treatments. Do not be forced into them. Your family and friends will also suffer. They will not want you to die and you will want to do everything possible to stay alive. Please do not ask them to make your decision on what to do. Talk with them. Discuss options, but do not require them to say, "Yes this" or "No, do not do that" They feel guilty if something goes wrong
remain active as long as possible.. the rest of your body is still healthy.
We want to send our gratitude to Jan to tell 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 want to talk too much, do not hesitate to us please contact us at outreach@asbestos.com, comment below or on Facebook.
