Shannon is carer for his partner, Daniel who was diagnosed with Burkitt Lymphoma in 2014. Burkitt’s is a rare blood cancer that affects young people, and accounts for only 1% of adults with Non-Hodgkin’s lymphoma.
“Daniel never imagined that treating a life ending illness would come with its own set of life-altering consequences. As a result of the cancer and treatment, Daniel has been left with disabilities that have severely impacted his way of life.”
As with many rare and less common cancers support is difficult to navigate. “Daniel was only able to rely on family and friends during treatment. Sadly because of his age and the nature of the cancer that was being treated he was too old for the youth groups and too young for the senior support groups.”
The couple contacted Rare Cancers Australia when Daniel and Shannon’s local member Stephen Jones mentioned the charity. “When Daniel was going through treatment back in 2014, there wasn’t much information available about Burkitt Lymphoma on hand. We found a real lack of in-hospital education during treatment which meant that Daniel felt left out of the loop most of the time.”
Shannon did research and read peer-reviewed journals and used resources from the Dana-Farber Cancer Institute, Harvard University and the Leukemia Foundation. A family friend with a background in the pharmaceutical sciences was also able to help them understand some of the immediate and longer-term effects of the chemotherapy regime and helped us understand some of the permanent outcomes that would result from treatment.
“Getting help post treatment can be anxiety inducing and very stressful. Oftentimes medical professionals are quick to dismiss symptoms and concerns and finding the right team of people to help you can be very challenging, especially if you live in a regional area” says Shannon.
Prior to his diagnosis, Daniel was an avid outdoorsman, enjoying several sports including skiing, skating and mountain bike riding. After 8 months of an intensive chemotherapy regime, Daniel survived but was left with debilitating complications from his treatment.
When asked what the most challenging thing was about a rare cancer diagnosis, Shannon reports “You are forced to self-advocate and this can be overwhelming for the patient, carer and family. I would feel better knowing that our health systems were better funded, there was more support for patients and their families and that medical professionals were better trained and more compassionate towards patients.”