Sometimes the journey with mesothelioma can be an isolating experience, at these times it is important to reach out to the mesothelioma community. All of us have our own stories to share – patients, family members, healthcare providers, friends – we all have our own perspective, our own experiences. By sharing our experiences we help those who are struggling see a light in the tunnel.
This week, a patient who was contemplating a clinical trial but had not yet committed because he was worried about the side effects, was put in touch with someone who had been in the same trial. He talked to someone who had been where he was, and found out that the person is doing well. The participant was able to re-assure him that he had not suffered the side effects that he was worried about. Although there is no guarantee that he will be as lucky and not experience the side effects, he was still comforted by talking to someone who had walked before him.
The importance of belonging to a community- of belonging to something bigger than ourselves- is a basic human need. As humans, we need to belong. No patient chooses to belong to the mesothelioma community, but still he is comforted by it.
No man is an island entire of itself; every man is a piece of the continent, a part of the main… ~ John Donne
There are many ways to stay connected today. Social media is an important part of life. We can stay connected with each other through Facebook, Twitter, Instagram, and email. Some patients and caregivers have the opportunity to put a face to a name by meeting some of the leading researchers, and long term survivors, at an upcoming conference to be held on Sept. 26, Mesothelioma Awareness Day, in New York City.
The 2015 New York Regional Conference on Malignant Mesothelioma is a collaborative effort between the Mesothelioma Applied Research Foundation and Memorial Sloan Kettering Cancer Center. See The Meso Foundation for more information.
Research is how mesothelioma is going to be cured. Hearing about progress, from the researchers and hearing about the clinical trials that are ongoing also helps to strengthen the bond of community. Join the mesothelioma community and learn about the latest research, reach out and find some support, and make some new friends!
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].