4 ways to effectively advocate for your loved one.

The ability to effectively advocate is a skill you’ll want to master as quickly as possible when your loved one is battling cancer.  Here are 4 rules to get started on the right track…

4 ways to effectively advocate for your loved one. You think this will be so easy, but it's actually really hot! These quick tips (and some practice) made it much easier to effectively advocate and help the doctors see what I am seeing.

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When my dad was diagnosed with Lung Cancer, we had an even bigger problem (if you can imagine that).  It’s a rare syndrome called Paraneoplastic syndrome that only affects 3% of people with Lung, Ovarian, and Breast Cancers.

You have a better chance of winning the lottery than you do of getting this syndrome.

Figuring out how to describe all these crazy symptoms, so I could effectively advocate for him, turned out to be harder than I expected.  I am not a doctor, but I can tell you from a normal person’s perspective, this is a rare disorder that creates a ton of neurological issues.

 I mean seriously problematic, neurological issues…

My dad is the only person with cancer, that I have ever met who is blind in one eye and who has lost his hearing completely.

When I say this syndrome is a problem… that’s the understatement of the year.  We started this whole crazy journey trying to figure out what was wrong with his eyes.  As the symptoms progressed, and things got more and more intense, I was finding myself desperately trying to effectively advocate more and more.

Advocating for someone can be complicated, particularly when the symptoms are crazy, erratic and don’t seem to have a common thread.  My dad can’t hear anything and is totally blind in one eye.  He has a pain that continuously moves around his body and shows up in every scan as inflammation (it started in his hip and before long, he couldn’t walk at all, then it moved to his shoulder/neck area, and down his arm- resulting in a full cardiac workup to ensure that he was not having a heart attack).  He has a facial droop that resembles Bell’s Palsy.  In fact, everyone thought it was Bell’s Palsy…until it never went away.

Because we have multiple symptoms that are serious in nature, and specifically handled by specialized doctors, daddy has been referred to multiple specialists.  Which means there has not been one Dr. who has watched this progression from start to finish like we have.

So, it’s our job to make sure the doctors clearly understand what is happening, so they can help us fix it.  A few months ago, daddy was sick.  I mean really sick. He couldn’t keep anything down… not medicine, food, liquids and his blood pressure was dropping really low.

We had anti-nausea meds, but they only work when you can keep them down. ☹  And when you can’t keep liquids down, you become dehydrated really fast.  It took us about 3 weeks and a few trips to the hospital/ urgent care to get all of this under control.

Why?  Because we were dealing with multiple issues here not just one.

We have a weird syndrome creating havoc, dehydration and, medications which can both make his blood pressure drop and when you add the cancer to the mix, it can be really hard to tell where these symptoms are coming from.

So how do you effectively advocate in a situation like this?

 Stick to the Facts: Give details and use examples of things that are happening. Discuss any risks associated with these details.

Here’s an example: “This is the second day he is vomiting.”  “He can’t keep anything down including water (hydration), food (starvation) and his heart medicine (life-sustaining).”

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.  Ask questions and clarify information beforehand and if you don’t know something, say you “don’t know.”  Don’t guess!

Make a list: 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.

Speak up: 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.

The ability to effectively advocate is one of those skills that can be more complicated than it looks.  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… which in turn will give them a shot at the help they need.

P.S.  If you’re drowning in all this cancer business, and you have no idea where to start…  The Cancer Combat Plan is a step by step guide from someone who has struggled through this and found ways to manage the chaos, the stress and the overwhelm.   

Things feel better, and more in control when you have a plan.  So if you’re looking for action steps, resources, and strategies that will help you manage this crisis, we’ve got you covered. And it’s totally free… 

You can get the Cancer Combat Plan for free here…

4 ways to effectively advocate for your loved one. You think this will be so easy, but it's actually really hot! These quick tips (and some practice) made it much easier to help the doctors see what I am seeing.

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