No days off

Have you ever encountered this particular situation,

Them: “Hey, when are you off again?

You: “Well I am off tomorrow but I…”

Them: “Oh good because I need you to…”

Or my other personal favorite,

Them:How are you doing?”

You: “Whew, I am worn out! It’s been a long week!”

Them: “How are you always tired, you only work three days a week!!!” 

Seriously? SERIOUSLY?!?!?!?!

Let’s start with the fact that nurses work with people every day we are at work. PEOPLE. Like, human beings… HAVE YOU SEEN OUR SPECIES??? We deal with emotional outbursts, insults, violence, unrealistic expectations, death, etc. ON A DAILY BASIS! It’s not just 3 days, or 4 days, or 5 days, or whatever schedule that we work. It’s the emotional baggage we deal with on days off. It’s wondering if you could have saved that patient if you had done one thing differently. It’s trying to figure out why this one nurse hates you. It’s sitting at home thinking about the child abuse victim that you know will be given back to their parents. It’s thinking about the insults the doctor hurled at you because you weren’t moving fast enough. It’s class assignments due at midnight. It’s the kids having soccer, baseball, and basketball practice the couple of days you have off. It’s 3 weeks of laundry that still needs to be done. It’s a house that desperately needs cleaning because you haven’t had time. It’s never having an inkling of downtime.

It’s constantly feeling like you are walking on a razor-thin edge between success and insanity.

It’s stressful.

The last thing we need is to be made to feel guilty because we are too tired to hang out or because we don’t have time to be someone’s personal errand-runner.

Your days off belong to you. Every single one of them. You deserve to power down. You deserve to do NOTHING if that is what you want to do. You aren’t being “lazy”. You are trying to maintain your sanity. You are not wrong for turning down a night out on the town. You are not wrong for telling someone “no” when they start to come up with your schedule for your day(s) off for you. You are not wrong for shutting out the world temporarily if you need to. You take care of so many people, you deserve to take care of yourself. Nurse yourself back to health. Take your days off and do whatever the hell you want with them.

A nurse that doesn’t take care of themselves can’t effectively take care of others.

 

 

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Li-Fraumeni Syndrome

Every now and then you all know that I like to share some of the things that I encounter. This week I encountered a disorder that I had never even heard of:

Li-Fraumeni Syndrome

If you are scratching your head at the name don’t worry, so was I! This is something I have never come across. You know me, when I don’t know… I am all over the internet until I do know.

I will say I had no idea such a brutal disorder existed.

Let’s get to the gist of what this syndrome is. The disease was first recognized back in 1969. Drs. Frederick  Li and Joseph Fraumeni were studying familial cancers and this study focused around four families that suffered with multiple cases of young adult and childhood cancers. It turned out that a mutation in a gene, TP53 to be exact, made them predisposed to cancers. Oh, while we are talking about the gene, it’s a tumor suppressing gene (figured I would throw that at you so it makes a little more sense). As if that wasn’t enough, it made the carriers more susceptible to rare cancers. We are talking cancers of the “soft-tissue, bone sarcomas, breast cancer, brain tumors, adrenocortical carcinoma and acute leukemia. Other cancers seen in LFS patients include gastrointestinal cancers and cancers of the lung, kidney, thyroid, and skin, as well as in gonadal organs (ovarian, testicular, and prostate.)”(lfsassociation.org)  This article gives a lot of info

Li-Fraumeni Syndrome is an asshole.

It was the statistics surrounding the genetic mutation that shocked me the most. According to the LFS association, individuals with the mutation have nearly a 50% chance of developing cancer by the age of 40. It gets worse. The risk goes up to nearly 90% by age 60. However, hold on for this one, women have a nearly 100% chance of developing some type of cancer within their lifetime (much higher risk for breast cancer)!

Yeah, I was NOT ready for that particular statistic.

Like I said, Li-Fraumeni Syndrome is an asshole.

What should trigger oncologists to test for this mutation is family history. If a patient has a strong family history of the cancers listed above, especially if family members tend to get cancer at a young age (40 or younger), LFS should be looked at.

So, what made me do some research on LFS? A patient. I came across a young patient coming for a radiological study that had a tumor, while one of their parents was battling cancer as well. Yes, parent and child were both going through chemotherapy at the same time.

Once again, Li-Freumani is an asshole.

I happened to be a part of the care and saw some prior scans of the patient and had never really seen such a large tumor. Someone from the patient’s medical team happened to be down here with us and they were able to tell me the name of this syndrome.

I can’t even imagine what it would be like knowing that I carry such a genetic mutation. Would I ever want to have children? If I decided to have children, would I feel guilty if I passed it on to them? I had this discussion with some of my coworkers and we all had differing views. So bloggaverse, I ask you two things:

  1. Have you ever heard of LFS?
  2. Would you ever have children if you knew you carried the mutation?