Advocating for a family member or close friend who is experiencing cancer symptoms can be complicated. Especially, when the symptoms are crazy, erratic, and don’t seem to have a common thread.
My dad for example, completely lost his hearing and was totally blind in one eye, as a result of a weird syndrome (Paraneoplastic syndrome) that came with his cancer.
When you are dealing with several symptoms that are serious in nature and are being referred to specialist health professionals that focus on and treat specific things…
That probably means there has not been one Dr. who has watched this progression from start to finish like you have.
It’s the role of an advocate to make sure the different people seeing your loved one clearly understands what’s happening, so they can help you fix it.
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How do you make sure you’re effectively advocating for better health in a situation like this?
Give Details and Use Examples
The most important thing you can do is give details and use examples of things that are happening. Discuss any risks associated with these details, or any medical decisions that have been made.
Here’s an example: “This is the third day he has diarrhea.” “He’s going X number of times a day. We’re concerned about dehydration and he’s exhausted but keeps running back and forth to the bathroom. We’ve tried medicine, a B.R.A.T diet, and are pushing fluids with electrolytes but it doesn’t seem to be slowing down.”
Your job is to paint the “big picture” in a way that will get you the help you need.
Be as Accurate as Possible
Having the correct information is critical to getting the help you need. Be sure about the facts you are giving.
Ask questions and clarify information before speaking to the doctor or the nurse. Make sure you are accurately describing pain, areas that are infected, and symptoms that are happening.
Give clear and detailed examples and present any circumstances that might be happening (this only happens after eating, at night, etc.).
If you find yourself in a situation where you don’t know something, say you “don’t know.” Don’t guess!
The best way to deal with everything that happening is to make daily notes. The world works on data and the health care system definitely does.
- When did that start?
- How often does it happen?
- How long does it last?
- What does it feel like?
There are always a slew of questions to go with the start of new symptoms.
The easiest way to be ahead of the game is to track things. As things are happening, its a good idea to make a note of the following so you have a good detailed description to give to the doctors.
- What new health issues are they presenting?
- What are the symptoms/problems?
- Have they started any new treatment options?
- When it started (Dates are best).
- When it stopped (3 days later- dates are best).
- How long an episode lasted or if it’s continuous?
- Rate pain or discomfort on a scale of 0-10.
- What’s been happening (dr appointments, test results, medical history, new med, recommended treatment, new soaps or detergent, etc.)?
- Identify any known triggers (if this symptom always happens after eating, make a note of that).
Write it Down
Write down everything! It helps you stay on top of things.
New or reoccurring symptoms, good questions you need to ask, things you want to better understand. I am always surprised by how much is discussed every time we meet with the doctor. And sometimes there are difficult conversations happening and it’s hard to stay focused.
And I ALWAYS get sidetracked and forget the questions I want to ask.
It’s easy to get distracted and forget things during the doctor’s appointment because there is so much information coming at you.
Take good notes and make a list of the things you need to talk about. It will help keep you on track.
Sometimes advocating for someone is more than just talking to doctors and healthcare providers.
Family caregivers should discuss any proactive measures or solutions that have been put in place to address a hazardous issue.
Ex. “He poured his own medication and administered an extra dose of Gabapentin for the last 3 days.” After we figured out what happened, we decided the safest course of action would be to pour the medication together as a double-check system.”
Find solutions to problems and anticipate hazards. Find safe ways to handle medicine, strategies to avoid falls, or adaptive equipment to make things safer and more comfortable (things like walkers, wheelchairs, commodes, and toilet seat risers).
By advocating, you’re ultimately trying to put things in place that create the safest and healthiest environment. You are positively contributing to their quality of care and creating better outcomes for their health.
Don’t be Shy
If you’re not sure something is important, it doesn’t hurt to ask. Healthcare workers can’t help you if they don’t know what’s happening!
Do the best you can to help the doctor see what you are seeing.
Medical Professionals can’t help you if they don’t know something is an issue, and I seriously doubt that you are the only one struggling with this.
It’s hard to know what’s important when EVERYTHING feels like a crisis (because that’s what cancer is). So, if it’s an issue and it’s causing you or your loved one frustration, bring it up.
Advocating so someone can receive the best care is a skill that you develop over time. The bottom line is getting and giving the most accurate information possible. This is how you can give someone the best possible care.
With a little bit of prep work and some clarifying information, you’ll be able to help your loved one paint a clear picture of their symptoms, problems, and struggles. So you can get them the help they need.
P.S. Feeling overwhelmed by everything that comes with this disease?
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