“Once more unto the breach…”

In many states once you get outside of the city areas the highways have poetic names like “Highway M” or, “Highway Z” or, “Highway PP.”

Every time Kathleen and I drive through Wisconsin we pass a sign that reads, “Hwy V”  I have yet to be on top of my passenger duties enough to snap a photo of the sign, but it always makes me smile and imagine that it’s pronounced, “Highway The Fifth” and can almost hear, “Once more under the bridge, dear friends…” in my head.

So yesterday I reentered the world of Chemo, this time for the third time, and the day was rough.  The chemo itself wasn’t TOO rough, it’s never terrible while I’m getting it.  It takes about a week for the effects to kick in.  But the start of this round are a few out-patient treatments, which I like better than staying in the hospital.

The main reason I like to be out of the hospital is that it’s always a crap shoot what kind of nurse one will get, and so far my odds are running 5-1 “excellent nurse, very helpful” vs “nurse who can’t be bothered, not great.”  The type of nurse that’s assigned directly affects the quality of care, kindness means SO MUCH and when it’s missing from the nursing equation, it can be a bit hellish.

Of course I’d rather have an efficient nurse than a sweet-but-clueless nurse (I’ve SELDOM had the latter, for what it’s worth) but overall I’d prefer an efficient and KIND nurse.

So yesterday, my day started with a Lumbar Puncture (and we know how I love those…)

I checked the online portal and was surprised to see my in-time had been changed to 9:15 from 9:30, so I rushed Andy along and we made it, but just a bit late.

Upon check in, though, we were told that the appt had been cancelled.  I’ve become used to Health East cancelling my appts on a dime, usually after an extended fasting period (this happened TWICE last week) but I was pretty frustrated.  The admin who checked us in was also flummoxed, she knows me and remembered my name and was surprised to see my appt had disappeared.

She asked us to wait to the side while she got a nurse to explain the situation, so we sat for about 20-30 minutes.  Finally a nurse came out and did the nurse-walk think I really hate (where they walk really fast but I can’t keep up because I’m on walker and in pain…)  As we entered the dressing area he turned to us and said, rather curtly, “You should have been here an hour ago, you know…”

And and I were NOT having it.  We kid of tag-teamed him, “No, we weren’t – until an hour ago the online portal said we should be here at 9:30!”  He was not having it, he insisted that it was folks like us who were late who held up everyone for the rest of the day.  We asked for a different nurse.

The new nurse was lovely, but she couldn’t access my port for love or money.  My port has been a problem since it was put in, and I always prepare myself for a decent amount of pain as they try to get the needle to work into the diaphragm of the port.  Even with the cream it’s very painful.

So as time ticked away, and they had to take person after person ahead of me, it became clear that this wasn’t working.  They sent me up to the chemo beds and the nurse in the chemo area had been able to access the port, although it took a bit of fiddling with a type of blood thinner to actually get my ‘blood draw’ to come through correctly.  I received my several hours of different chemo drugs.  By this point I was starving, but no food was allowed as the lumbar puncture’d been rescheduled for 3:30.

Back down to Interventional Radiology, this time I was the only patient in the area and was taken in pretty quickly.  I explained about the pain the last time I had the procedure and several of the nurses had been at previous non-painful punctures with me, so that was a help.  We made sure that a decent amount of time had passed between starting the pain meds and the actual puncture, which was enough to make it practically pain free.

Such a long, intense and confusing day is almost harder for Andy than it is for me.

Andy hates to wait in the hospital for hours, so generally after I’m settled in someplace they’ll bug out and run home to check on Gerry, take the dog for a walk, and come back in time to see me settled into my next appointment.  Sometimes this works great, but sometimes this can lead to a bit of a traffic nightmare with Andy finding themselves between locations when I need them near me for some information stuff, or with it just taking longer to get from point A to B than Andy expected.

So as frustrated and exhausted (and hungry) as I was at the end of my day, Andy was almost MORE frustrated.  Thankfully they had brought me some food, so when the only think I really felt like I could eat from the menu (red jello) wasn’t available, Andy had an alternative for me and it was DELICIOUS.  But we had a rough ride home.

These long, long, hungry and painful days are not fun for ANYONE.  Maybe we should’ve taken “Highway The Fifth.”

14 thoughts on ““Once more unto the breach…”

  1. What’s up with these people? I’m appalled, and someone has to show this post to the administrators of that hospital. SOON.

  2. I’m a retired nurse. It makes me so sad to hear these stories. Here’s hoping there are only wonderful nurses in your future

  3. I agree with you on the good nurse ratio, and honestly, having a callous, mean nurse is the worst! I had one on days after my kidney surgery, and she was flat-out awful and made things worse.

    Thing is, this should not be happening to you at all. It isn’t right to make cancer patients go all over, deal with bad attitudes and messed up appointments, and not have things right. I’m so sorry this is making it all harder and worse. I agree: time to let an admin know.

  4. I’m glad the day was ultimately successful, though infuriated that you had to go through that. I do hope you reported that nurse, and BIG thanks to Andy for helping tag team him!

    Do you know about jello squares? Jello you can eat with your fingers. Recipe is on every box of jello, for those folks with toddlers, or those who really need jello that doesn’t quite melt on touching. Maybe Andy could toss some in a cooler for travel days?

  5. Thinking of you and remembering our own similar nightmares. Good God why must they kick you when you are down? Some people just have issues and should not be in nursing!

  6. That nurse should be reported and better yet told he should be working at McDonald’s! You are on our prayer list at our church. Your endurance amazes me.

  7. There is never an excuse for a nurse taking out a scheduling SNAFU on the Patient. That kind of behavior is reprehensible. Good on you for asking for another nurse.
    I can’t imagine what this journey is like. I applaud, as always, your desire to share it with the enormous number of friends and acquaintances whose lives you’ve touched.
    Here’s hoping that this “post chemo” week is at least tolerable.
    Please tell Andy for me that she is a warrior and I am sending you both scads of positive energy.

  8. Maren’s has this happen & suggests you Always do a screenshot of the appt portal & keep on the camera until after you’ve been seen. Don’t Hesitate to Show Your Proof of Appt Time!!!
    I’ve used it when appts times change, vanish, or are moved from loc.A to loc.B that’s 20miles away. I also note the names of helpful & Not-helpful people, always thanking each one by name. Sometimes it inspires better treatment. Husband calls it “medical namaste”; at the very least, they appreciate me as a person since I’ve recognized them as a person.
    Hope this helps you, Annie!

  9. If you can’t be kind and loving one doesn’t belong in the nursing profession
    You don’t need the extra stress of a nasty person. Oncology nurses are very special people.

  10. I’ve been reading your blog for many, many years now, and I’ve watched your kids (through that blog lens) grow and change, and develop into the amazing human beings they are today. I hope Andy knows how very much we out here are impressed with the way they’ve been such a responsible, caring, strong support for you, and for Jerry. I don’t want to embarrass them, but they deserve to take a bow. Way to go Andy. Bravo.

  11. I’m so sorry a day that was going to be hard anyway had to be harder. I’m with everyone who salutes the valor of Andy. And sending lots of love to all of you.

  12. Jumping in here to echo what so many others have said — we love you, Annie, and we are so proud of and grateful to Andy for their care of you.

    And a note to Andy: Decades ago, I was a young person caring for a seriously ill parent. It was hard for me to ask for help, and took me way too many years to start talk therapy to process all I had been through. My experience is not yours, but I urge you to accept help when it is offered, and to ask someone in your St. Paul network for support or a break on a regular basis. You are awesome, and we want you and your parents and Max to come out of this process as healthy as possible.

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