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February 09, 2010

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Lorne

Wow, this story is amazing and had me laughing, I am in process of having a port put in for my chemo treatment and wanted to get some feed back from folks who have had it done. After reading about your experienced, I was afraid and freaking out but could not help laughing throug it all. Thank you for sharing your experience and so sorry you had to go through a rough time.

Rebecca

Bena, how awful! I thought my own port story was bad, but yours is horrible! (At least I didn't have to experience the actual port installation. I was mercifully unconscious for all my cancer operations.)

In my case, I stupidly moved too much on the afternoon that I came home from my port insertion operation. The port didn't have a chance to heal firmly in place, and my movement caused the port to slide a few inches down my chest (under my skin) from its original position. My surgeon put the port just above my cleavage in the center of my chest, with the idea that it would keep me from having a visible scar on my upper chest if I wore tops with low-cut necklines.

But then the port slid until it sat over my breastbone, IN my cleavage.

During my first chemo session, 4 nurses each tried to put the needle in several times, but couldn't get it to connect properly with the port tubing or vein. It was increasingly painful, but I gritted my teeth and tried to be a good, obedient, cheerful, easy patient. Finally, the nurses gave up and sent me off to the radiology department downstairs, where a radiologist used a fluoroscope as a guide when he inserted the needle. (It only connected when inserted sideways at a weird angle ... probably because the port slid out of position???) After the needle was in place, I had to catch an elevator and walk back to the chemo room and sit in my "stall" to have chemo drips for 2 hours.

Two weeks later, my second chemo session was MUCH, MUCH worse. I'd been having a LOT of port pain for over a week, but after inspection, my surgeon saw no reason for it, and basically said I should expect it to be a "little sore" because the port site was still healing. He was annoyed that the port had shifted down.

At my second chemo session, it was EXTREMELY painful when several nurses tried to insert the needle again. They kept saying, "It's not supposed to hurt that much." It was obvious they believed I was just exaggerating, which was mortifying to me. I struggled to maintain my composure and dignity, and I was determined that I wouldn't cry. But at the same time, I was getting angry that they refused to take me seriously and that they had no contingency drugs handy to help deaden that area before they jabbed me. They made zero effort to reduce my pain.

When they finally failed to place the needle properly, AGAIN, they sent me downstairs to radiology, AGAIN.

This time, though, the pain was unbelievably excruciating as the radiologist tried to insert the needle. Much worse than the first time. I quickly "lost it" and started squirming and begging hysterically for him to stop, but he refused. It seemed to go on forever, so I had to tell myself, over and over, that "people survive torture" somewhere in the world every day. "People survive torture."

He finally found the port position he was looking for and left the needle inserted where it felt like a high-powered electrical current applied to a raw nerve ending. By this time I was sobbing and I pleaded with him to take it out, saying "it CAN'T stay there!!!!" But he refused and was clearly disgusted by my weakness and hysteria. He said the needle HAD to stay, so I could have my chemo treatment. Then he left as quickly as possible.

I had to force myself to take deep breaths, get a grip on myself, carefully sit up, and climb off the scanning bench, with the help of a sympathetic nurse who had been left behind to deal with me. She accompanied me down the hall, where I ducked into a bathroom to wash my face, drown my eyes in Visine, comb my hair, and try to compose myself before I gingerly walked back upstairs where my husband was waiting in my chemo stall. (I didn't want him to be worried by seeing how thoroughly rattled and blasted I felt.)

I kept my shoulders and chest as immobile as possible as I walked, to keep from jarring the port and making the awful pain worse. Then I had to sit in that chemo chair for 2 hours, desperately waiting for the chemo drips to end and for the nurses to FINALLY take that needle out.

People survive torture.

It's no wonder that some patients come out of cancer treatments with PTSD.

My husband and I had a quick follow-up appointment with my oncologist immediately after that chemo session, and he seemed concerned by how wrecked I looked.

I told him what had happened.

He started to reach forward to touch the port, but I flinched badly and instinctively pulled back away from him and out of his reach. Before I was even conscious of it, I had hunched over and was guarding my chest with crossed arms.

He was stunned and said, "That port needs to come out."

I was reluctant to go through another operation, but I couldn't imagine surviving such pain 2 more times (for my last 2 chemo sessions), so I agreed. A few days later, the bad port was replaced with a new one placed higher on my chest and below my right clavicle. The new port worked perfectly and my last 2 chemo sessions were uneventful.

That was 6 years ago, but I'll never forget it. Ever since, I've felt defective for having so much trouble with that port and for being so affected by pain that apparently never bothered anybody else.

I would still feel that way if not for my current family doctor. I'd been having chest pains off and on in recent years, so I finally had a battery of heart tests in February, which all showed that my heart is fine.

"So, why am I having chest pains?" I asked him. I showed him where the pain and pressure travelled across the left side of my chest.

He said, "I think I can fix that." He had me lay on the table, then performed some bone-cracking chest crunches, followed by pushing down hard on the center of my chest. Then the pain and tightness was gone.

He explained that I had had a dislocated rib, with one end wedged under my breastbone, in the center of my chest.

It wasn't until the next morning that I noticed that the dent I'd had in the center of my chest (EVER SINCE CHEMO!) was also gone, and my chest was now restored to a normal contour.

The significance of that dent slowly surfaced in my mind, then jolted me as I finally "got it."

For six years, I had assumed that that dent and the resulting chest deformity was residual damage from my cancer treatment, because that's exactly where my defective first port had been. I had assumed the dent was permanent tissue damage due to the surgical insertion and removal of the port.

But after the rib revelation, I checked the daily notes my husband wrote during my "chemo summer." A few days after my first chemo session, I fainted and fell in the shower, hit my head and was unconscious for several minutes. (It was a bad concussion, which I'm still trying to get help for now.) My husband's notes mention "port pain" the next day and an emergency visit with my surgeon to get help for the pain on that same day. (My memory is blurry about this.) The notes mention that I twisted my knee when I fell, so my knee was sore, too.

Apparently, I had also dislocated my rib at the same time, but I was unconscious and never realized it.

So my "port pain" 6 years ago was actually RIB and BREASTBONE pain, due to a serious dislocation directly underneath my port. When the nurses and radiologist stuck the chemo needle into that port, they were repeatedly shoving a sharp pointy object into freshly damaged and inflamed tissue which was still suffering from an unrelieved, continuing injury (because the dislocation remained uncorrected.)

Of course it hurt! Of course I'd had "chest pains" ever since!

I'll always be grateful to my family doctor for "fixing" me and solving a mystery and embarrassment that had bugged me for 6 years.

But I'm still angry at everyone at that oncology clinic who refused to believe me or to respond HELPFULLY when I was begging for pain relief.

Even so, NONE of my medical treatments were as appallingly incompetent and cruel as the operation you've described.

Bena, you have every right to be LIVID about such terrible treatment!

For your own sake, though, try to escape and find soothing side therapies like music, art, massage, funny movies, hypnosis, meditation, walking in a park, and other relaxation techniques to distract you. It's important to try to relieve your stress and to forget that bad operation as much as you can.

For now, try to focus ALL your body's energy on HEALING.

Later, when you're feeling better, you can go back after those bastards and make them listen! (That's what I'm doing now.) But try to set all that aside and keep yourself from thinking about it for now ... for YOUR sake, not theirs.

(I know this is much easier said than done... )

I hope the rest of your treatments go smoothly and result in total success!

My cancer was triple-negative too, but I've been clear for 6 years since treatment (fingers crossed and knock on wood) ... so there's definitely HOPE and new treatments are being discovered all the time.

Good luck!

Janet

This is sad I chose to not have a port-due to the damage it could do to my heart. Hard stick...oh well.

Robin

When I had my port in I was wheeled in to a operating room where I was immediately strapped down both arms and my body. Was told the doctor would be right in 40 minutes he showed up. By then I was in hestarics. They put me to sleep woke up having a hard time breathing to find out my lung had been punctured. A 4 hour stay
Turned into a 5 day stay

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Breast Cancer Bio

  • Bena Roberts was a busy blogger/ journalist when she found out she had Metaplastic Breast Cancer nearly 4 years ago. She had FEC-D Chemotherapy in Frankfurt Uni-Klinik and was on the Panther trial. Remarkably she beat her Stage 2b Grade 3 diagnosis and now runs a Facebook group for other women with Metaplastic Breast Cancer. She works for several local charities and is now retired from the world of mobile marketing and technology. Bena has taught Business English at the Telekom and is currently a freelance relocation agent for Frankfurt and Darmstadt. Contact Benabroberts @ gmail. com Facebook: https://www.facebook.com/MetaplasticBreastCancer Facebook: Closed Group Metaplastic Breast Cancer

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