One of the things we believe is so important when we talk to mesothelioma patients is the importance of putting your trust in your mesothelioma team. Trust that they have your best interests at heart, and that they will do everything possible to ensure that your wishes are respected.
Both the mesothelioma patient and his or her family must be comfortable with the team and communicate with them what their needs are. When things go well this also seems to work well. Unfortunately, mesothelioma is a complicated disease and it does not follow any rules for anyone involved, including the patient, family or the health care team members.
When we meet patients they are usually in the throes of treatment, whether it be surgery, chemotherapy or a clinical trial. When talking with patients and families they often ask countless questions like: Is this normal? Have you seen this before? What do you think is next? Do people recover from this? Will I ever get out of here?
Being treated for mesothelioma requires trust as well as the ability to assess all the information you have, and to keep it in perspective during this stressful time. Recently, a family member of a patient in the ICU, commented to me how helpful it had been to know what to expect while her family member was critically ill. By phoning before she came to visit, she felt better prepared so when she saw her loved one it wasn’t such a shock. Before seeing her loved one in the ICU she heard terms such as intubated, pressure support, diuretics, weaning, but now she saw all this first hand.
How much information about potential problems is enough? What is the balance between possible complications that happen rarely- but do happen- and the course of your individual mesothelioma journey? As the woman visiting her loved one in the ICU continued to talk to me, I was struck, once again, with how important trust and open communication is for the mesothelioma patient and family.
The importance of receiving the information, but putting it in the right context, is critical. For example, sometimes patients get re-admitted after surgery for a variety of reasons, such as fluid balance, nutritional status, infections, or pneumonia. Often it is just for a few days, but some patients require a skilled nursing facility for a period of time to recover their strength. This is often a difficult time for patients and families as it was not in the original plan.
Ask questions, learn as much as you need to for yourself and your loved one, all the while develop a trusting relationship with your team. The journey is a “long and winding road” with the goal for everyone involved being quality time for mesothelioma patients with their loved ones.