Advocacy as a Care Partner

The way I was introduced to lung cancer was by my mother being diagnosed shortly after her demise. It was then that I understood the severity of the disease.

I can say within the 1-2 month span of very intense events that took place during that time, I was struck that there were some important yet missing pieces during that trial that had me slightly on edge. My advocacy came about in this community with wanting and needing to change the trajectory of being vocal, in this case with the facility where my mother was treated.

Advocating for my mother

As my mother is not here to give her own account, I will use my own perspective, and my family as we were her care partners. A call from my mom stated she was going to the hospital as she was not feeling well, to her coming home about 2-3 weeks later was a lot to process.

I’m sure it was a lot for her as it was for the rest of us. I didn’t quite understand why the simple question, ‘So, what is going on”, could lead to so much unsurely and back and forth unclarity.

This is how my advocacy started.

Do you know that phrase "sick and tired of being sick and tired"? Well, that is the initial stone that broke the camel’s back.

Now 13 years later I still feel like there are hurdles in discussing this very important topic in lung cancer. I was frustrated with how my mother’s story started and how drastically it ended when she lost her battle.

This was a battle she didn’t even know she had until it was too late to do much about it. I became invested to understand how a person who routinely goes to the doctor, and has multiple scans. How and the heck does this get missed?

The challenges of accessing resources

The resources that were supposedly available in her region, well they were not as effective as we would have liked them to be. How do people get local resources, and why is the information for better and more effective resources out of reach or take time to play detective?

I’ve found with my advocacy it takes a lot of inquiring to finally, and I do mean finally, get to the best source. This is how my advocacy started.

I can recall two doctors who were more helpful than her initial oncologist, but by that time things were already dire, and we had to proceed accordingly. In my experience, the noted resources did not do our family a bit of good.

I suppose having a plan as to what type of resource you need means asking questions like:

• Is it to educate you about the disease?
• Is it to help financially with co-pays, treatment, or travel?
• Is it to help seek second opinions?

The list can vary but when the possible go-to seems null. It can tend to put a complete pause on continuing toward the end goal of seeking further information.

Encouraging advocacy

My advocacy started to help stir others newly diagnosed with lung cancer to be vocal about their care. It’s that simple.

When chest pains don’t go away, how do we have that transparent conversation on whether chest pains can mean lung pain? How and what type of tests should the doctor suggest?

How about why some don’t dig a bit further with referring to the best exams, such as a CT scan? My advocacy as a care partner started with too many questions and pushing for the proper answers when the clock was ticking.

The time to fight is now, with integrity, grace, hope, and a smile….when you feel like it