Friday, September 06, 2013

and then all this happened

As our story left off a couple of days ago, I was grumpily bracing myself to go through one more test and then dig in my heels when it came time to make a decision that was right for me.

Aren't there dozens of aphorisms about paths being full of twists and turns? That's certainly how it went for me, yesterday.

The day before my appointment, the port-team coordinator called and asked if I would mind moving my appointment up from 12:30 to 12:00. Despite the fact that I was going to have to skip an exercise class, I agreed easily - in part because I didn't mind an excuse to miss the class, partly to be accommodating and partly because I had lunch plans and I wanted to get them as early as I could.

The next day, I arrived for my noon appointment. There was a single receptionist on duty in the busy X-ray unit in which the port team is housed (Module X at the General for any Ottawa folks). I got in line, checked in and was directed to take a seat while I waited to be called.

After 40 minutes, I decided it was time to check in again with the receptionist (at my previous appointment, I had patiently waited for an hour. The receptionist suspected I'd been forgotten and someone did come to get me suspiciously quickly after I checked back in). She called the port team. No one answered the phone. The receptionist took my info and said she'd keep trying.

At 1:30pm, fuming over the fact that I'd actually been asked to come in early, I queued again to see the receptionist. Looking surprised to see me, she picked up the phone and then put it back down, "I'm just going to check what's going on. You've been waiting a long time." She apologized to the line-up of people behind me and disappeared down the hall.

A few minutes later, she re-appeared, shaking her head. "There's no one there."

I must have looked as angry as I felt when I said, "I'm going home. Thanks very much for your help but I need to leave now and I'll deal with this later." The receptionist nodded, sympathetically.

Fortunately, my friend Doreen had arrived while I waited and done a very good job of distracting me. She waited for me while I grabbed my stuff, muttering angrily, "This is so going on my blog!"

Doreen took me out for all you can eat sushi (by the time we were done waiting, I had been hungry enough to chew off my own leg). When we were finished, I felt sated and infinitely calmer. The adrenaline from anger and stress had also seeped away. I nearly fell asleep in the car on the ride home.

I called and left a message for the C., port coordinator and collapsed on my bed. I woke up an hour later and a few minutes after that, the phone rang. It was C. calling me back. She was profusely apologetic.

I demanded to know what happened. Apparently, someone had communicated to the port-team that my appointment had been moved to another hospital and, without checking with their boss (or looking in the waiting room), they left. 

C. told me that she was furious. I said, "I'm glad you're furious because so am I. In more than 7 years of treatment I have never experienced anything like this."

She said that she understood and that "this is not normal and it's been addressed." 

I believe her. She was spitting mad. C. has always returned my calls promptly and seemed both competent and professional, so after a few more minutes of this, I decided to move on. "So what now? How can we fix this?"

We had a long conversation about what could be determined by further testing and the likelihood of being able to fix my port without surgery. We agreed that, at this point, it makes the most sense to just remove and replace. The Drano-fluid flush will only fix it if it's clogged. And the odds of that working, are only 50-50. 

I really don't know if I have all the right information but, frankly, I'm fed up and want this to be over. I'm ready to go under the knife, for the sake of a working portacath.

I took a deep breath and said, "I don't want to move the port to my right side."

C. explained to me again that the route from a right side port to the internal jugular vein is shorter, so there are fewer problems. 

I said, "I understand that but I've had a left-hand port for more than 7 years without incident. I already have a big scar on my left side and I'd really like to avoid having another on my right."

And then...she gave in.

"Well, then we can just put your port in on the left side. It's worked for you in the past and you want to avoid a new scar. That's no problem."

It was easy. I told Tim, it felt like they were ready to agree to anything after what had happened. "I should have asked for them to throw in 500 dollars for my trouble."

Now I can start fretting about the details. I have to go to the cancer centre lab and have bloodwork done. next week. Surgery will be on September 17th (on the same day as my next treatment), at 8 in the morning. I need to make sure I have someone to drive me (I'll be sedated during the procedure. Last time, I needed a wheelchair to get to the car but it all wore off fairly quickly, once I was home). Daniel will need a place to go before school, since Sacha has a doctor's appointment and Tim will have to go with him.

It's all a little stressful and the whole idea of implanting a port freaks me out a little, even though I've been through it before. I"ll be very glad when it's done.

And for the record, not once yesterday, did I say the words, "It's OK." I was too mad to be a good girl.

Update:  Our favourite pizza place forgot a topping on one of our pizzas. I called to complain. They offered to send another pizza. I said, "No. We'll eat what we have. Just give us a credit towards our next order." I'm on a roll.

11 comments:

sassymonkey said...

I can't drive you but if there's anything else you need that I can do, please let me know.

laurie said...

Thanks so much! I think we'll be able to sort it all out. And then it will all be better.

Zoom said...

Good for you! I'm naturally a Good Girl too and I have to make herculean efforts to overcome it each time. I'm so impressed with how you took the bull by the horns and told them what you wanted and GOT it!

janice said...

Hey Laurie;
I am Andrea's friend. Having raised a child, and successfully got her out of the house to university, I just cannot imagine doing all that with health issues and uncertain future. Obviously you have no choice. Keep up the great writing and soldiering on. You have an admirer.

I bought your book a while back, and then I did not read it - because I don't really like my ereader. I will make another effort.

laurie said...

Thanks so much, Janice! And if you don't like your ereader, I have a few copies of paper version to sell. :)

Lene Andersen said...

Two reactions: Oy vey and Woo! Good for you for getting mad enough that you drew a line in the sand. It's amazing how people actually acquiesce when you get assertive, innit?

PS. How crazy is it that I couldn't spell acquiesce while typing with my fingers. Had to start up Dragon and dictate and dictate it ;)

Stephanie S. said...

Hi Laurie,

If you had lymph nodes removed from your mastectomy side, you really don't want a port on that side.

A protruding port isn't nice either, but it's asking a lot of compromised lymph nodes to care for surgical healing, repeated pokes and risk of infection or lymphedema.

Oh, I've had bilateral mastectomy without reconstruction, but much worse cancer & treatment on the side with many fewer lymph nodes and some lymphedema.

warm healing wishes,
Stephanie
www.mylifeline.org/stephaniesugars

laurie said...

Stephanie, this is so helpful. I did have lymph nodes removed on my right and I have truncal lymphedema. It was one of my arguments against a right side port. I was told it wouldn't matter but my gut said exactly what you just articulated. Thanks so much for making me feel better about my decision.

Ken Craft said...

Remind me not to get you angry at me, Laurie. ;^)

laurie said...

SNORT.

Jim's Girl said...

Oh Gee! I have been reading your posts backwards, catching up. Now I understand why you were fed up in the later post.

C is terrific, but somehow a lot of things get lost in translation on their way to the Civic campus. I waited there for 45 minutes last week because they didn't know C had told me to go in. Trip #2 went more efficiently. Here's hoping #3 on the 26th isn't blog-worthy. I'm taking it on the right this time despite my fear of more scars -- I form keloids. But the infection seems to have made the left side unwise.

I wish I could offer to pick you up on the 17th, but I am tied up and car-less that morning. Wait, when did they say you would be ready? If it is after 1:00 I could probably make it. Let me know. ~ Kate