No matter how great the support system, care center or caregiver, it's nearly impossible for patients with cancer to fully share their experiences with those that don't understand. Which is why it's so important for patients to find peers to discuss their cancer with.
I have often shared why I feel that it is essential for caregivers to reach out and connect with each other, and I recognize that it is far easier said than done. My belief extends from making peer-to-peer connections as a caregiver to the need for cancer patients to do the same.
From the onset of my sister's diagnosis, her nurses preached the importance of making connections. She was diagnosed at twenty-seven and fell into the AYA, adolescent and young adult, sector of cancer patients. This fraction of patients are considered to be between fifteen and thirty-nine at diagnosis and can feel alone and isolated when told they have cancer, in comparison to their peers without the disease. My sister was advised to seek support from leukemia and lymphoma society and stand up to cancer and lacuna loft. Unfortunately, she declined all the suggestions she was given.
Cancer is a unique journey to oneself. And nobody, even those diagnosed with the same cancer, will share the same story. Making peer-to-peer connections is not about finding a duplicate story. It is about sharing experiences, opening up to somebody who knows what you may be going through, talking through the harder times and celebrating the successes when they come.
Even if one has the greatest support system around them, it can still be challenging to explain what you are going through. As a caregiver, I was present for nearly everything my sister went through, but it was not my body that was going through it all, and so there are things that I simply was unable to relate to. I could be empathetic, but having somebody to connect with who was going through something similar is quite different.
Reaching out can be scary, and knowing what to share can be tricky to figure out. Making connections with another cancer patient can be heartbreaking if one party passes away during your communication. Building those relationships in the face of such adversity, soliciting advice from each other about nausea management and anxiety can be immensely beneficial. Doctors, your care team, and those who care about you can only help in specific ways and all of us, including caregivers, have our limits to help the patient.
As with so much in life, there are both positives and negatives with each experience. I will say that it has been my experience that making connections with other enduring something similar to my own experiences through cancer has led to some remarkable things. And by far, the good has far outweighed the bad.