Should I get a port?

@amyb5 From what I've learned here your advice is appreciated. Yes to a port and yes to anesthesia during placement of the port. You are so right about there being no rewards for being the "best" patient. The providers involved with our care do this every day but we do not.

I am signing myself as one of the sisters.

@ffr Thanks- it was put in Tuesday, today is Friday and I gave in and took Tylenol just now. It REALLY hurts. No fever, redness or swelling- just healing from ncisions and that darn thing in my chest! Appreciate your reply.

@jenelleseaman Thanks, Jenelle. Who would have thought this question would generate so many helpful replies?

@naturegirl5 Thanks, Helen!

I think it is very disappointing that so many of us were not told about the possibility of a port or told last minute and given little if any information about what to expect. “Make an appointment with Interventional Radiation.”! I had never heard of that specialty or department before - and I was 67! Still in shock over my diagnosis and the surgery, I was not even with-it enough to think about questions. And when I knew better at removal time and asked for anesthesia & it was refused, I should have gotten up off of the table and walked out, or asked to see someone in charge. Instead, I cried. The young, male nurse told me that I could squeeze his hand as hard as I needed to. Lesson Learned: I should have asked the oncologist to specify on the script that “this patient should get twilight sleep.”
The medical system is hard to navigate and each hospital may do things differently. It’s a huge burden on top of everything else.

@ffr I've learned more from this group than the support staff at my physician's office. Not sure how the physicians' offices can fix this but it definitely needs fixing!
Re: Sedation- I was supposed to have conscious sedation but I was completely out. The last thing I remember was asking how soon the sedation meds would work- he said 5-10 minutes. I'm not complaining but it wasn't what was ordered.

@hlthcr2000
I had to look up conscious sedation and found this:
“…twilight anesthesia (also known as conscious sedation or Monitored Anesthesia Care) is not general anesthesia. While it uses some of the same medications, it keeps the patient in a semiconscious, relaxed, and responsive state rather than fully unconscious, and it usually requires a local anesthetic for pain management. “ (The other type is unconscious anesthesia.) This is what is often used for tooth extractions and colonoscopies. I know that I’m out of it when I get colonoscopies and I feel & remember nothing!
(Though apparently, patients speak and answer questions, which might be embarrassing?!)
So it seems that this is what I wanted and this is what you got.

I had never had a surgery or major health issue before my diagnosis. I had my first panic attack between when I learned that I had cancer and my first oncology appointment. I thought I was having a heart attack and when that was ruled out I realized that I was not as strong as I thought. The girl who never liked to take medication asked for an anxiety drug “just in case.” I would take one before each new cancer experience or when I felt anxious, though I learned that I was too stingy. (The bottle of 30 lasted almost two years.) But just knowing that I had another tool if my breathing exercises didn’t work was helpful. I learned the hard way that I needed to do what I needed to do for me.

It’s great that you found this site early on, as I was late to the game. But I did get a wonderful mentor cancer mentor through OCRA; and SHARE also has some great resources.

I’m sorry that this is so long, but wanted you to know that I understand where you’re at and maybe some of my experience will help make yours a little easier.

@lizziegil I had the port in 2017 was removed in 2018- endometrial cancer. I even named it Mort the Port - and when it was removed it was called Deport Mort. I still have a big bump and the removal I had no sedation which was a big mistake. And yes they told me my veins would be horrible after chemo. I am ok now.

@ffr Love the "slap on the head"- or colloquially "slap upside the head" comment!!! Thanks for making me smile. Three days to infusion #1

So glad that I could make you smile.
Re first chemo: I packed everything I thought I might need and pretty much needed nothing except for the ice mitts for my hands & feet and my water bottle.
The pre-meds (Benadryl and ??) slurred my speech and knocked me into another zone. If you get cold, ask for a blanket. The medical staff was wonderful, especially on day 1 when they knew that I was a newbie. I’ll be thinking of you.
PS: my daughters bought me “chemo shirts” - tops with zippers at the shoulder that can be unzipped for easy access to the port. Comfortable for me and the nurses loved them for ease of access.