Nobody ever told me how difficult my 20s were going to be. Throughout my teenage years, I imagined my 27-year-old self with a partner, a plan for a family and a stable future. I imagined I’d be mature, happy, responsible, and of course, financially independent.
Being diagnosed with cancer didn’t help my progress toward that vision. On July 16, 2010, my doctor gave me the devastating news that a large mass occupied my entire right chest cavity. A CT scan and eventual biopsy confirmed what I hadn’t even considered a possibility: I had cancer. I would spend my 26th birthday bald, bloated, and bummed out from undergoing aggressive chemotherapy treatment.
I tried to work through treatment, hoping I could maintain whatever modicum of independence I had acquired in the three short years since graduating university. But eventually, I accepted the impossible fatigue that many cancer patients report, and began to rely on the government’s measly pay cheques to cover the rent of my very expensive downtown Toronto apartment. Before I knew it, I was getting eager to finish treatment just to pay off my debt to my mother, my boyfriend, and MasterCard.
It’s ridiculous to assume finances are not a top priority for cancer patients. Despite the fact that a cancer patient is facing a fatal disease, eating, clothing yourself, having a social life and living a normal life are still priorities – all of which require a steady income.
The financial burden cancer treatments place on patients has been long documented by researchers. Bleyer1 highlights “financial limitations” as a potential explanation for the survival deficit in older adolescents and young adults, as compared to younger and older patients. Many other researchers have cited financial stress as a leading concern for young adult cancer patients, both before and after treatment2,3,5,6,8.
I consider myself lucky to live in Canada where the bulk of my treatment costs are covered. But, without health coverage, the costs of my anti-emetics, steroids, and other prescribed and over-the-counter medications were an additional burden to an already overtaxed, young patient.
I wasted no time after chemotherapy treatment finished to return to work. One week before starting intensive radiation therapy, I found myself back at my old desk, with my old colleagues, only I was living in a stranger’s, tired, old body. The shock I had endured after being diagnosed with cancer hadn’t even worn off yet, but the negative balance in my bank account forced me to return to my old life before my mind and body were healed.
Despite the extensive research on financial stress available to clinicians, my financial woes were never brought up by my treatment team. While some might argue that it’s outside of the practitioner’s scope of practice, Klemp et al.’s4 study shows nurses identified financial issues as a topic in which they had little interest, but a relatively high need for information in order to assist patients.
Furthermore, Soliman and Agresta7 encourage social workers to help young adult survivors navigate the maze of paperwork and regulations they may face. This support would have been greatly appreciated, except I didn’t even get the opportunity to meet with a social worker. Simply talking to someone who acknowledged my dire situation would have been reassuring.
My experience is by no means the rule for young adult cancer patients, indeed many have no financial burden, and still others have a treatment team more focused on holistic care. Either way, it’s no secret that more and more people are surviving cancer, yet mainstream treatment still fails to address the psychosocial impact of the disease.
This upcoming May will be one year since hearing those coveted words, “you’re in remission”. I’ve moved out of my expensive, downtown Toronto apartment and am now living with my boyfriend’s parents. Financially, I’m back on track, but only after I accepted that I couldn’t do it on my own.
I can’t take back the damage cancer has done to my body, mind and life course, but at least now I have the experience and knowledge that has helped me regain control. The next time I get bad news, I’ll accept it knowing I have health insurance and a robust savings account that will allow me to worry about what really matters – getting better.
1. Bleyer, A. (2007) Young Adult Oncology: The Patients and Their Survival Challenges. A Cancer Journal for Clinicians (57)4 242-255..
2. Bleyer, W.A. (2002) Cancer in older adolescents and young adults: Epidemiology, diagnosis, treatment, survival, and importance of clinical trials. Medical and Pediatric Oncology (38)1 1-10.
3. Evan, E.E., Zeltzer, L. K. (2006) Psychosocial dimensions of cancer in adolescents and young adults. Cancer (107) Supplement 7 1663-1671.
4. Klemp, J., Frazier, L., Glennon, C., Trunecek, J., Irwin, M. (2011) Improving Cancer Survivorship Care: Oncology Nurses’ Educational Needs and Preferred Methods of Learning. Journal of Cancer Education (26) 234-242.
5. Roberts, C.S., Turney, M.E., Knowles, A.M. Psychosocial issues of adolescents with Cancer. Social Work Health Care (27) 3-18.
6. Skinner, R., Wallace, H.B., Levitt, G. A. (2006) Long-term follow-up of people who have survived cancer during childhood. The Lancet Oncology (7)6 489-498.
7. Soliman, H. and Agrest, S. (2008) Current Issues in Adolescent and Young Adult Cancer Survivorship. Cancer Control (15)1 55-62.
8. Zebrack, B., (2000) Cancer Survivor Identity and Quality of Life. Cancer Practice (8) 5 238-242.
9. Zebrack, B. (2011) Psychological, Social and Behavioral Issues for Young Adults with Cancer. Cancer. May 15 2011, 2289-2294.
Stephanie Sliekers was diagnosed with non-Hodgkin’s lymphoma in July 2010 at the age of 25. A large, 10x15cm tumour was found in her right chest cavity (or mediastinum) after experiencing intense pain and shortness in breath. After a long, painful diagnosis process, she started 6 months of aggressive chemotherapy and radiation treatment at Princess Margaret Hospital in Toronto. Just one year out of treatment, she is still in remission.