Archives: patient advocacy

Looking For Light in a Dark Room | Cancer Knowledge Network.

Living with chronic advanced cancer is a tough path. I understand that others around me often don’t really understand that melanoma has no remission. It’s fatiguing to deal with as a patient, family and surrounding community. And thinking about living a long life post “lab rat” (clinical trial patient) is intimidating not knowing what long term health issues may surface.

Finding ways to support this population is imperative and one of the reasons I consider myself a patient advocate. It’s nice to see my own needs considered and reflected on by other patients.

Patient advocacy: Port-a-cath (aka Martha’s striptease)

Tales from the infusion room:

The group infusion rooms at Arizona Cancer Center hold four chemo La-Z-Boys, one in each corner. I was sitting on my side of the room during a recent visit and overheard the husband of a new patient asking the chemo nurse about a port-a-cath for his wife.. He was asking where they were placed and for details about surgery to have it placed. (For some reason my inclination is always to say my port was “installed” rather than placed. We are Borg, prepare to be assimilated!) He asked about the benefits and care for the port.

The chemo nurse kindly gave him great information, but sometimes it’s good to hear from another patient. (And sometimes I like to hear myself talk!) So, as this sweet couple in their late 60’s get up to leave her first infusion, I pipe up and get the husband’s attention. I told him that from my perspective, a port-a-cath can really make treatment easier and it’s saved my veins, which were building up scar tissue before I was even diagnosed with cancer. I asked if he wanted to see what it looked like. He was grateful for the input and said sure, he would be interested.

The wife is in the bathroom now, so I am only interacting with this gentleman. At this point, I look down and realize I am going to have to unbutton my henley and pull it down. I know I won’t be exposed, but it won’t appear that way to this man. I look over at Daniel, he raises his eyebrows at me, then I carefully unbutton, and show off my port! Anything in the name of advocacy!

It was worth it. I remained clothed (somewhat) modestly and the man and his wife thanked me for the perspective. Cancer is scary! We have to share our stories!

Here’s another post I’ve shared about my adventures with my Port-a-cath!