My Father’s Nightmare
There is nothing so incredibly frightening and horrible in fiction that it cannot be surpassed by the terrible things we deal with in non-fictional day to day living. I have to see what my parents go through facing cancer and trying to receive adequate care and support and it truly is a nightmare. What my father is going through now is painful for him – it is painful for all of us. He was not able to tolerate chemotherapy, and his cancer care team is offering him only two options: chemo, or death. His body was not able to tolerate the chemotherapy, which caused him to experience terrible side effects including strong hallucinations, ending him up in the emergency room. I’m researching other treatment options and I know there are some: such as radiation, being used to treat cancer.
We will be looking into getting a second opinion.
This is an interview with my father, Robert Saulson. He came in to UCSF with complaints of liver pain in 2011 and in the course of testing to investigating the cause, it was discovered that he had lung cancer. While the lung cancer was successfully treated, the liver caner was not detected until his six month wellness check after the end of the lung cancer treatment. He is upset and frustrated with the bureaucratic separation of everything into specialists and failure to communicate with a general practitioner (failure to have a central hub of communication) which seems to have lead to the end of the investigation of liver pain complaints one he was referred to a lung cancer specialist.
He is frustrated with the continued issues with failure to communicate about pain management. My father has had Hepatitis C since I was a kid back at the end of the 1970s, and he acquired it as a result of intravenous drug use – the doctors should have known that 35 years of living with Hep C could end in liver cancer, but they missed it. Now, because of his history of drug use doctors are reluctant to give my now 70 year old father adequate pain relief, and the general physician he sees for pain management seems unaware of his currently grim prognosis.
I am having a hard time writing in a detached and unemotional journalistic manner about any of this – this is my father, and I am understandably upset. He has been told that without treatment he has less than a year left to live. He is understandably upset – upset about the failure of treatment, about his inability to take the treatment offered, about the failure to have had it diagnosed earlier, and about the pain he is in: pain that is not being treated because doctors are expressing that they are afraid he will become addicted, while at the same time expressing doubt that he will even be alive long enough to need to worry about being an addict. It’s all very confusing, and overwhelming.
We invite you to share your own stories about troubles with pain management or cancer in the comments, thank you for listening.