The Diagnosis Nightmare
Health Care and Therapeutic Decisions
What’s next? A lot of uncertainties – Who is the best Doctor? Where is the best hospital or medical facility? What are the treatment options and other alternatives? When to start or stop a treatment? and why (reasons for each question)?
Now, how to make these important health care decisions? As the condition changes or disease progresses, these questions will come up again and again. It is overwhelming and stressful. Making decisions under great uncertainties are very difficult. There are no easy answers. These decisions matters of life and quality of life.
My sister received chemotherapies and her lymphoma was kept well under control for 13 years. She had been working full time and was active socially. While remain in remission, she was persuaded to accept a bone marrow transplant (BMT) for “cure” before age 60 with "higher anticipated success potential”, as she was a good candidate. It was a very traumatic procedure that completely destroyed her body’s immune system. Afterwards, she became totally disabled and getting weaker each day. Consequently, complications and treatments became endless vicious cycles. The aggressive medical treatments finally killed her cancer and also took her life, at age 61.
My uncle was in late stage lung cancer and his Doctor suggested trying a very expensive “new drug (not covered by insurance)” to treat. With strong will to extend life and best hope, he agreed and spent a fortune for 2 units of injections. After received the first dose, he became unconscious and never woke up.
Patients are vulnerable - they may not be fully informed or mislead for the treatment effects and risks. They may be impulsive with eager for “cure”. They may trust too much on the statistics and optimistic expert opinions. They may be intimated and over powered by the Doctors. They may be incapacitated in decision making under disease and/or medication or medication influences. They may not have time to read or understand the long and complex consent form in small print before the treatment.
As standard, the bottom line of the consent form is that there are no guarantees for any medical treatment; you may die and you are responsible for your own death. Now you must sign.
Coping with Life Threatening Diseases
It’s difficult, but life goes on. Now unpleasant medical appointments have largely occupied your calendar, taking place of your personal time or work time. You try to manage pain/discomfort and show your best outlook socially. Your roles are changing dynamically, from active to passive, or even withdraw. You often experience negative emotions and may need spiritual or other supports to keep mentally strong.
You may have difficulties navigating in the complicated health care system, dealing with health insurance, trying to understand and follow inconsistent orders from several therapeutic specialists. It’s not unusual that a specialist only focuses on his specialty area and neglect the person as a whole. You may feel lost as when you have multiple doctors, but no one is accountable. Reach out for help; don't hesitate. Voice your concerns; don’t be passive. Each individual is to be treated as a whole person, not a collection of body parts. Personal dignity, value, and will are to be respected and protected as well. Most importantly, don’t neglect nurturing your body. Quality nutritional fuel and well rested body with energy power will keep you running strong against illness on your marathon life journey.
Keep up your hope; don’t give up. You can survive cancer. My mother was a cancer survivor. She was treated for colon cancer at age 66 and she passed away due to other causes at age 95. Cancer can be a chronic disease to live with, just like hypertension and diabetes, under proper medical management.