Advocating for a loved one 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 that came with his cancer.
When you are dealing with several symptoms that are serious in nature, and are being referred to specialists 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.
So, it’s your job to make sure the doctors clearly understand what is happening, so they can help you fix it.
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How do you make sure you’re effectively advocating for a loved one in a situation like this?
Give Details and Use Examples
Give details and use examples of things that are happening. Discuss any risks associated with these details.
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, ect).
If you find yourself in a situation where you don’t know something, say you “don’t know.” Don’t guess!
The world works on data and dr.’s definitely do. 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, make a note of the following so you have a good detailed description to give to the doctors.
- What are the symptoms/problems?
- 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, testing, new med, treatment, new soaps or detergent, ect).
- Identify any known triggers (if this symptom always happens after eating, make a note of that).
Write it Down
Write down everything!
New or reoccurring symptoms, 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 I ALWAYS get sidetracked and forget the questions I want to ask.
It’s easy to get distracted and forget things during the appointment because there is so much information coming at you.
A list will help keep you on track.
Sometimes advocating for a loved one is more than just talking to doctors.
Discuss any proactive measures or solutions that have been put in place to rectify a hazard.
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, wheel chairs, commodes, 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 quality of life.
Don’t be Shy
If you’re not sure something is important, it doesn’t hurt to ask. The doctors 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.
They 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 for a loved one is a skill that you develop over time. The key is getting and giving the most accurate information possible. 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.
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