Painful expectations

Advocacy, General 3 Minutes

As most of you are aware, I ask a lot of questions in order to set my expectations whenever I start a new treatment or have a procedure and I highly recommend doing this. Whatever the answer, I set my expectations and prepare for whatever I’m told. That might mean how I schedule the days following the treatment or procedure or what meds to have plenty of on hand.

What is really hard is when the expectations don’t match reality.

One of the worst experiences was when the orthopedic surgeon told me that I’d walk out of the hospital after the surgery where he was placing titanium rods inside both femurs at once. I woke up in so much pain and I was really mad at him because he didn’t set my expectations correctly. He admitted later it was because he didn’t want to scare me. I was a few days from learning I was metastatic so nothing else was scary at that point.

The point is, I didn’t need sunshine, I needed the cold hard truth.

Recently, I experienced my first liver biopsy. It’s the third kind of biopsy I’ve had in this breast cancer experience. The first was the breast biopsy in March of 2017, which happened without much time to prepare. My doc explained it well and everything went according to expectation except for the milk coming out of the holes she made to get the biopsy. My boys were still nursing then and thought it was really funny. Me, not so much.

The second biopsy was the failed bone biopsy in December of 2019. I fell asleep pretty much as soon as they injected me with the versed and fentanyl mixture and kept on sleeping for hours in the recovery area. Pretty much everyone else who started their biopsies around the time I went in had long left before they called my husband to join me. I was achy and sleepy for days after that one, exactly as they’d prepped me to expect.

And now the liver biopsy. As I type this post, it is Sunday evening, and I’m more than 48 hours since that experience. I was told many many times that I wouldn’t feel pain, that they would ensure my comfort. Over and over, I was told to ask for meds when I needed them.

Well, that was a big fat lie.

Apparently I maxed out the fentanyl dose they were willing to give me about half way through and wouldn’t give me anything else by IV or mouth during the procedure even though I asked several times. Afterwards, they treated me like I was drug seeking when I kept telling them how much my abdomen hurt and asking for something. I kept saying, I have a really high pain threshold and I avoid pain meds almost at all costs, so when I’m saying it hurts, it really does. I finally got a little relief but it was doled out in very small doses. Wishing I’d premedicated with some of my medical cannibis.

The last two days have been better each day as the soreness and pain deep inside my abdomen has dissipated. I’ve avoided activities and lifting anything and been careful as instructed.

But I won’t be running back in for another liver biopsy anytime soon and I’ll definitely be asking more questions about pain relief if I need to. There’s no reason I had to experience that much pain or anyone undergoing a procedure like that. I was told over and over that the liver biopsy would be better than the bone biopsy in terms of pain, well that just wasn’t the case at all.

I’ll probably write more about this drug seeking treatment after I’ve ruminated a bit on that. My only experiences with pain medication has been during giving birth with my boys and now cancer treatment, both very valid times pain medication is needed. And I’ve some stories to tell. 😉

Bottom line for me — the medical professionals need to be honest and up front about pain and then provide enough medication to treat it. I’ve had lots of different experiences and pain meds now and I know I didn’t need to be in that much pain.

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

28 thoughts on “Painful expectations”

  1. It is hard to read about your experience. There should be no restrictions when it comes to helping a cancer patient, and I can see it is related to your previous post. But I learn from your experience. I am sending you a long distance hug ❤

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  3. Sunshine vs reality is no gift for sure, not when reality can be so cruel.
    I’m so sorry, Abigail. Thankful this hurdle is behind you and you’re improving each day.
    🙏❤️🙏

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    2. Oh I’m so sorry!!! I, too had a failed bone biopsy and have worked alongside colleagues to see liquid biopsies come to life! I hope this is an option for you in the future. Please reach out if you need anything. Cancer keeps taking and we must take back! Thinking of you

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      1. I’ve had many liquid biopsies through trials and what is on the market. None of them has shown us anything helpful. I do hope that the algorithms get better quickly, which is why I’ve participated in trials as requested. All we can do is what we can. Thanks for reading and commenting!

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  4. Ugh! I’m so tired of the pain medicine game! They deny meds to legitimate patients in pain to save the lives of people abusing drugs! They refused to fill my elderly friend’s script after a hip replacement, and she had to ride in the car in pain through 5 pharmacies including the one that filled my father’s with the medicine they claimed not to have. My friend gave up and went home without them.

    I’m so sorry they treated you like that. I’ve been there, and I have the same high tolerance. It scared my husband (at the time) when I started crying because he knew that about me, and knew it meant I was in intense pain.

    Praying for the best possible outcome from the biopsy results. ❤️🙏🏽❤️

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  5. Hi Abigail,
    I’m so sorry you had to endure so much pain. It’s upsetting that you weren’t properly informed about what to expect and therefore, you couldn’t properly prepare. It’s even more upsetting that your request for more/better pain relief during the procedure itself wasn’t better addressed. That’s unacceptable. It’s also just plain cruel.

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  6. So sorry to hear about the pain you experienced. When I had my liver biopsy I had very little discomfort. Even if the doctor did not expect you to have so much pain, I don’t know why they did not respond when you asked for pain relief. I totally understand your anger and frustration.
    On another note, I was wondering why they are starting you on a new protocol before the results of the biopsy come back.

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  7. I hurt reading this, I’m sorry Abigail. Doctors need to abide by the oath they took and every single one of them need to be totally transparent and truthful when they explain procedures and after effects, especially PAIN ..🥲 love and prayers for strength and peace today.

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  8. “I didn’t need sunshine, I needed the cold hard truth.” is so true. I’m possibly looking at a liver biopsy next week and now you have prepared me. I also have a high tolerance to pain, but I remember asking my mom about the pain of childbirth and she did not want to share. (She had no such tolerance.) Why can’t medical people just be upfront about all this stuff? Are there that many weenies out there that they are afraid to tell us cold facts. That sucks.

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    1. True, the medical professionals have to focus on the average person or to protect the most vulnerable. I get that generally, it just sucks to always be the exception to the rule. Please let me know how the biopsy goes — I have heard that location and depth really does make a big difference. Love and hugs to you. 🙂

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  9. I’ve also been treated like a junkie (pre metastatic but suffering through fractures) and have a friend Stage 3 peretoneal that had to beg for drug relief. It is degrading and a huge insult to us. We have to go through so much, shouldn’t have to beg for drugs we need.

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  10. It should be mandatory for medical professionals to be 100% forthcoming, even if it doesn’t paint a rosy picture. In fact, I can’t think of any instances in any other area of life when I wouldn’t want the hard truth. Do I want my car mechanic to give me false hope when I’m about to take a long trip?

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    1. Exactly. I tell medical professionals all the time the same thing and yet still so much is held back out of some misguided attempt to be gentle or ease the hard news. It’s paternalistic and condescending, I think. It will take all of us pushing back against this way of doing things before anything will change. Thanks for reading and commenting!

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  11. My heart broke when I read your blog. With everything you have been through, that lack of compassion was absolutely unnecessary. I hope you feel better and that in future you are always with your own team and won’t need another. I remember going for a bone biopsy before I was diagnosed with mets. I’d lost a lot of weight but otherwise wasn’t too bad. I walked into the room and the Dr looked amazed and said very jovially that he figured I’d be on a stretcher or at least in a wheelchair haha (his laugh). I was shocked as I hadn’t been told the results of my scans at that time and it was obvious what he meant. Honestly it was cruel and I’ll never forget it. I wanted to hear it all from my own oncologist. Anyway, we are all here wishing we could hug and comfort you. xoxoxo

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    1. That is just awful. I’m so so so sorry that happened. Medical professionals need more training and more feedback, I think. I’ve already started the process of educating the team who did my biopsy and will continue as far as I can with the executives at my hospital system. I just wish we all didn’t have to deal with so much on top of cancer. Love and hugs to you.

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  12. I had an almost identical liver biopsy experience in 2018. Excruciating pain. I got through it but I was in tears when I was returned to the pre-procedure room and the nurse held my hand as I sobbed. I don’t know how I laid still through the procedure…It is a memory that returned after reading this essay and I am again appreciating your holding it up for observation and reflection. When I had this done I think I was in the “put your head down and just get through this” phase. The nurse afterwards was very apologetic and I heard her say something to another nurse (with an eye roll) about the doctor who had done the procedure…that it was too bad that Dr____ wasn’t able to do it instead. Didn’t help me feel better at the time, but I marveled that staff knew about this doctor’s reputation & results, yet could do nothing! I will be asking LOTS of questions if I ever need a biopsy again.

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  13. A hard truth is better than a comfortable lie, no doubt about it. My heart goes out to you, Abigail. I’ve heard people talk about that pain associated with cancer, especially when I was in nursing school, and I can only imagine. I’m so glad you’re on the other side of it and I hope and pray you don’t endure it again. 🙏 Sending you love and we’ll wishes. ❤️

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