When your significant other receives a "terminal" diagnoses

Navita Dyal dyaln@mcmaster.ca

Abstract

My boyfriend (29 years old) is currently suffering from Rhabdomyosarcoma. This is his third reoccurrence, his oncologist has said radiation is no longer an option, as he has had too much in the past. His surgeons have ruled out surgery, as they already removed his eye after his second recurrence. Chemotherapy is not a curative measure for this type of cancer. The difficulty we face is Rhabdomyosarcoma only affects approximately 300 people each year in the US, so as you can appreciate, there are limited trials done on this type of cancer. Moreover, since it’s a pediatric cancer, Justin is ineligible for the few available studies. However, he is running out of options, and very determined to live.

As such, I have buried myself in research to find an alternative option.

While sitting in biophotonics class, I wondered why Photodynamic Therapy was not presented as an option to Justin. After speaking to researchers in 18 different countries, putting together elaborate presentations for his oncology team, and offering my research time to potential treatment centres, Justin is finally being treated at Roswell Cancer Centre with PDT. We are hopeful that this treatment will be successful, but it begs the question, why must the patient and his caregiver(s) be the primary advocate/researcher? Why must we navigate the system? Where does the burden of provision of care lie? Why are oncologists satisfied with conventional therapies that will not cure their patient?

I hope to present this talk, with Justin by my side. If he does not make it to September, then we will at least know that we explored all options. However, the question still lies - why must the patient/his caregiver do the groundwork? Why is the patient left to die, just because he has a "rare" illness?
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