Every patient, even when on the same regiment has a different experience. I'm surprised that her oncologist didn't talk with her at length about side effects etc. Unlike my experience in 1999, when I was diagnosed last year, I spent at least 45 minutes in discussion with the doctor and had to sign a 15 page consent form. I also came home with more than half a dozen pamphlets on various issues as well as a thick 3 ring binder from the Billings Clinic. It discusses all of the chemo meds, their possible side effects, and a 24-hour hotline number. Specific topics covered in this one guide cover an overview of symptoms, anemia, anxiety, bleeding, body changes, breathing problems, constipation, dehydration, depression, diarrhea, fatigue. fever. hand/foot syndrome, infection, memory and concentration, mouth pain and mucositis, nausea and vomiting, neutropenia, nutrition, pain management, hygiene, sexuality, sleep disturbances, skin rash, itching, heartburn, rapid heart rate, chest pain, pale skin, ringing in your ears, difficulty thinking, dizziness, fainting, , blood in urine or stool, nosebleeds that don't stop, uncontrolled cough, wheezing, temperature above 100,5. back pain, stomach cramps, loss of balance, fluid intake, eating problems, disorientation,and on and on. It also lists the circumstances inder which I should notify the doctor. And it warns the patient to "Ask questions of the doctor and other healthcare team members. Do not assume anything. If you are not sure, use the telephone numbers provided and call."
I am one of those people who has suffered every negative side effect known to mankind. And part of the extra challenge I face is that even though I have one particularly helpful friend who is an RN, a boyfriend who flies out every month to fill the freezer with cooked food,and a large number of the population of the town help me with grocery shopping, the Post Office,and other things that you are accustomed to doing without thinking. I live alone with no caregiver and taking care of oneself is a real challenge when it takes you an hour to bath, you're too fatigued to stay awake for more than an hour or two at a time, your equipment malfunctions, and the simple task of making a bed is a horror. One night I called my the hotline chemo nurse bacause of a problem.When they were unable to explain what I needed to do to solbe the problem, I called my chemo nurse. When I was unable to get her, her I called the Mary Margaret,angel of Miles City who came over, figured out how to solve the problem, problem and then sat there on my bed comforting me and easing the fear the problem had generated.I finally hired a couple of people to help me with the most mundane tasks and it is still a problem. Taking care of me is more than a fulltime job.
I hope your Mom finds the kind of support from the medical community and the generous people of this town that I enjoy. Please tell her thats I wish her the very, very best.
Johnnie Lou Lockett Thomas