Terry’s story: The unknown challenges with cancer treatment

July is National Head and Neck Cancer Awareness Day. Terry Betts wants to share his story this month to raise awareness and help others going through similar treatment. 

Terry was first diagnosed with squamous cell carcinoma (SCC) on the tongue and neck in 2006 after noticing lumps on his neck that would not go away. The diagnosis came as a shock to Terry and his family, but they were resilient throughout the treatment and eventually, he went into remission.  

In 2018, Terry was diagnosed with SCC again, this time in the hip and pelvis. He was told the only way to guarantee removal of the tumour in his pelvis was through amputation, but Terry chose to undergo chemotherapy instead.  

Terry hopes that telling his story will help advocate for better, and cheaper, access to cancer treatment in regional areas so patients can still be close to their family and experience less financial distress. He wants to help other people living with cancer live their life to the fullest, just as he has. 

Terry has faced a lot of challenges throughout his experience living with cancer, saying “My cancer journey has been a roller coaster in terms of emotions and reactions.”  

Regional treatment difficulties 

During Terry’s first treatment, there were a lot of difficulties accessing treatment because he lived in a regional area. To get the necessary treatment, Terry had to travel alone to Sydney for weeks at a time.  

Terry remembers finding this experience isolating. He says, “This is a significant emotional and psychological burden not just for a person undergoing this type of treatment but also for the family of the patient. This impact is often not taken into account.” 

Terry does note an improvement in recent years with an increase in treatment centres, programs, and accommodation services in regional New South Wales. “The fact that there are programs in regional NSW are of significant assistance to patients and their families,” he says. There are a lot more steps to be taken to increase equity for cancer patients in regional areas, but these achievements are worth noting.  

Unexpected side effects 

There are a lot of side effects of cancer treatment that Terry believes people should talk about more. He has had consistent issues with dry mouth since his first treatment which has required him to make frequent costly dentist visits.  

“Patients like me do not need the additional burden of always having to find out how to afford to continue treatment,” Terry says. 

After undergoing surgery during his first round of treatment, Terry noticed his pain started to get worse. Unsure if he should be concerned or not, Terry contacted Cancer Council’s 13 11 20 Information and Support line for assistance.  

Terry remembers, “I felt better knowing that things were progressing as planned and that really helped me”. 

“I made inquiries regarding my treatment and likely side effects, after effects and received good information that helped to lessen our concerns,” adds Terry 

What’s next for Terry? 

Since his most recent round of chemotherapy after his diagnosis in 2018, Terry’s cancer has been inactive and undetectable.  

Currently, Terry is working hard to advocate for cancer patients in the regional areas of NSW. To do this, he actively volunteers with Cancer Council by being active in Relay For Life and regularly volunteering at Cancer Council’s local Orange Office.  

Terry hopes that his story will help others stay optimistic during their treatment, saying “I was given three months to three years left to live. You just have to stay positive.”