< ![endif]–> Here are some suggestions from friends, family, and a few from us, based on our various and different experiences navigating cancerland. Suggestions from friends are in quotes:
- You must be your own advocate. No need to be shy or embarrassed; you have every right to ask questions, and there’s no reason you would already know these things.
- Take notes on what the doctors say, and ask questions right then and there if you want something clarified. Repeat things back to them and ask if you’ve understood correctly.
- Bring somebody else with you to appointments if you can. I find it really helpful to have someone else also listening and maybe even taking the notes. That way you can talk it over afterward and they can catch stuff you may have missed.
- [From a doctor friend]: “When someone is ill it is all too easy for busy doctors and nurses to detach themselves from the unique person they are caring for. You need to remind them that the patient is a cherished person. If your person is admitted to the hospital for part of her care, bring in photos of your real life and have her wear nice pajamas every day – no hospital gowns.”
- We haven’t had to stay overnight, but we talk and joke with all the staff from receptionists and phlebotomists to the cafeteria staff – we want them to like us, remember us, and root for us.
- “Come with questions: Read up on things ahead of time and come to every doctor’s appointment armed with facts and questions. Even the doctor with the best intentions has professional blinders on. Maybe they will tell you all your ideas are crap, but maybe they will say, yes, that could be a good option too.”
- “Keep track of everything. Assume that the doctors and nurses are going to screw up everything. Know your meds. Know what you should be taking when. Keep track of who just gave you what.”
- “Write everything down. Everything.”
- “Question the doctors. Even if you like them.”
- “The doctors don’t necessarily talk to each other so they might give contradicting advice or treatment. Find out what each procedure/drug/therapy is, what it does, and why they are giving it to you. Don’t ask the wrong specialist the wrong question. Think of doctors like plumbers and electricians. You want them working on your house, but only in their specific area.”
- “Find out if there is a specific organization (eg. the American Lung Association) that is a clearing house for information, and contact them to find out (for example): What new drug trials are starting. What are the current protocols. Where can you find long term cheap housing near the specialist hospital (this person’s mother was in Seattle for three months for trials). What kind of very low interest loans are out there for medical expenses. Etc.”
- “Ask a lot of questions. Write down your questions ahead of time so that when you are with the doctor you get everything answered. Take notes.”
- “Protect yourselves both legally and medically – this means a legal power of attorney and a medical health care proxy – do this important paperwork early and talk to you doctor and social worker about the specifics of a health care proxy in your state. In New York you must be very detailed about certain issues such as feeding and fluids to have the full authority to make decisions.”
- “Hospital billing: When a hospital screws up billing (and my experience is that they will), use certified mail for all correspondence – I never got any result from regular mail or talking to someone (no matter how nice and helpful they seemed at the time), but a good old certified, signature required letter always got some sort of result. Seems to kick off a serious process of some sort. My experience is if they get the idea you are persistent, they will eventually just compromise if nothing else.”
- “Insurance companies always like kicking things back as uncovered for some reason – don’t even spend any effort the first time they do it for something, just ask the hospital or doctor to resubmit, if they reject it again, you might have to get serious and write them a letter.”
- “One last thought, our local hospital also has a social worker who was a godsend, she knew all the ropes, if you are similarly lucky, get to know yours.”
- From a friend whose partner had breast cancer: “Like you say in your list of suggestions, it is very important to keep track of everything and to be your own advocate. My partner carried a huge binder to every appointment and asked for copies of every test result and lab report. Sometimes we would arrive at a doctor appointment and find that they had not yet received a copy of the latest numbers and – voila! – Mary could pull her own copy. The medical system is sometimes very haphazard about mailing out results to each other’s offices.
Cancer is its own world. I cannot count the number of phone calls we’ve gotten from people asking Mary’s advice about their own new diagnosis or a friend or relative’s diagnosis.
It’s a good thing to be able to talk to someone who’s been through it recently. When considering reconstructive surgery, my partner got referrals to call several women who had & had not had the additional surgery. It was helpful for her to be able to ask frank questions – not to a surgeon (although she did that too) – but to a woman who had lived through the process. (In the end she decided not to have new boobs and has not regretted her choice.)”
- “[We are] using our phones to record the conversations with the doctors. It sure helps to listen to the tapes later — much deeper understanding and knowing what questions were really answered and what questions were not.”
- “Don’t be afraid to change doctors: We ran into a situation where we felt the communication with our doctor had broken down and we weren’t getting what we needed from him. The doctor was a great person, someone we had known for many years and had a lot of respect for. We changed and it revived the treatment process. (Frankly I suspect the original doctor had gotten too emotionally involved.)”
- “Be prepared to be bored: Unless you are on the brink of death, any visit to the hospital or ER will involve lots of waiting around. Take a book, games, or whatever entertainment you prefer anytime you go to the hospital. Even going to the ER at 3am, unless you in a condition that requires an ambulance, you are going to be sitting around. (Though sitting around an ER on a Friday or Saturday night may be enough entertainment in itself, you’ll learn a lot about humanity.)”
- “Cancer doesn’t cure the common cold: Unfortunately just because you have cancer doesn’t mean you won’t catch all sorts of other unrelated common ailments.”
- “The oncology ward is the place to be: My experience is that if you had to stay at the hospital, the oncology ward was the place to be. Ask to be placed there, even if it’s just overnight. It’s an unfortunate fact that nurses on the general floor tend to be overworked. The nurses on the oncology floor tend to have a smaller number of patients and the rooms were set up to be more comfortable (and more typically private).”