We routinely attend a new patient orientation at the hospital where we work. It is a very well-planned meeting that is designed to give an overview to patients and families on the diagnosis, the supports available, the program, and the logistics of being a patient.
At a recent meeting involving patients that are newly diagnosed with malignant pleural mesothelioma it struck me how difficult it is to know who is the patient. A room full of people and 3 or 4 are the patients. The roles of the family members and the patients are new identity’s taken on in a place that is new to them, with medical language that includes long words and confusing answers. The diagnosis of mesothelioma usually takes place after much more common diseases have been ruled out. At this meeting the patients and families learn about the logistics of being a patient. Housing options, parking availability, support services, a lot of information presented in a short time. They also learn about the disease itself, statistics, research, and a general overview of the history of the program. A lot to take in for anybody. Sometimes these meetings are the beginning of relationships with other families, friendships out of a devastating illness, in a foreign place, with confusing medical words.
What does the mesothelioma patient look like? At the beginning of the journey the newly diagnosed patient looks like everybody else. There are no visible identifiers. Most are healthy looking people of all ages, shapes, and sizes.
What do the caregivers look like? At the beginning they look like everybody else. They are all different ages, shapes and sizes.
Mesothelioma can affect anybody and does. The toll it takes is evident as the journey goes on. For the patient, some of the physical effects are the weight loss, and other various things that come up that need to be attended to. As the journey goes on it can be easier to recognize the family members as the stress is more pronounced on them. A lot of the time the caregiver is the one that looks different. Weight loss, tired looking, ageing as the journey continues.
On this day I was only able to identify one of the three people in the room as patients. The other two looked too healthy to have mesothelioma.
One of the mesothelioma patients described his journey to this point as “starring in a horror movie that you cannot wake up from.” The other two patients quickly agreed, you could feel the connection starting between the three.
This meeting is a stop on the journey, a stop that can include the beginning of new relationships and support throughout the challenging days ahead.