Lindsay Norris

[feature post] Dear Every Cancer Patient I Ever Took Care Of, I’m Sorry. I Didn’t Get It.

Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.

I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it.

I didn’t get how hard the waiting is. It’s literally the worst part. The diagnosis process takes forever. The different consults, the biopsies, the exams and procedures… and the scans. Ugh, the scans. You were going through the motions trying to stay positive- but at that point, you had no idea what you were dealing with and the unknown was terrifying. Knowing the cancer is there and knowing you’re not doing anything to treat is yet is an awful, helpless feeling. I’m sorry. I didn’t get it.

I didn’t get how awkward it was to tell other people the news. You didn’t know what to say. They didn’t know what to say. No one knew what to say- but there was some relief when the word started to spread. It may have been overwhelming to reply to all the calls and messages- and to get used to others knowing such personal information, but this nasty secret you’d been keeping was finally out and your support system was growing. I’m sorry. I didn’t get it.

I didn’t get how much you hung on to every word I said to you. You replayed it in your mind a hundred times. Did I really mean this or that… you wondered if you understood. You called me again to make sure. And maybe another time because your friend asked “well, what about _____”. You asked your other nurses to see if you got the same answer. Please know we are happy to take a million calls a day with the same questions until you can make sense of it. I’m sorry. I didn’t get it.

I didn’t get how much you googled. I told you not to do it. You did it, a lot- and so did I. Searching for information, hope, stories like yours, reassurance. It was impossible not to. My new stance is to just know what a good source is when you google. I’ll help you learn to filter the information. And I promise to give you more information, because I know how much you crave it. It’s not realistic to think you will have the willpower to not search at all (at least it wasn’t for me). I’m sorry. I didn’t get it.

I didn’t get what it felt like to get the sad looks all the time. Walking down the hall at work or seeing someone for the first time after finding out. You got the head tilt with a soft “how aaaare you?” You quickly got together your rehearsed “Doing pretty good, tired but hanging in there”generic response. Don’t get me wrong, I know you appreciated all the well wishes and concern- but it sure took a little while to get used to the pity. I’m sorry. I didn’t get it.

I didn’t get what really goes on at all those “other appointments”. I knew what to tell you to expect at your oncology appointments- but all the different types of scans, radiation, operating room, procedural areas- I didn’t really know what went on behind the scenes there and what to tell you. I should’ve known more about the whole picture. I should’ve been able to warn you that there was an hour wait after a dose of medication before you could actually have a scan. I should’ve been able to tell you what you can and can’t eat or drink before a certain procedure or that some treatments require going every single day. I’m sorry. I didn’t get it.

I didn’t get how weird it felt to be called “brave”. It’s a word that gets thrown around a lot, yeah it kind of made you feel good- but you still didn’t really understand why people would call you this. Sure you were getting through it fine (most days), but it’s not like you had a choice. I’m getting treatment because I have to- doesn’t really make me feel like much of a hero. I’m sorry. I didn’t get it.

I didn’t get how crazy this makes you. Like you literally wondered if you had lost every working brain cell. Especially when dealing with side effects or other symptoms. You could’ve had every side effect in the book from chemo or none at all and you’d still wonder if it’s really working the way it’s supposed to. You may just have had a headache, or a common cold, or a sore joint- but you were never certain it wasn’t related to your cancer and always wondered if it was a sign of progression, even when it made no sense. I hope you didn’t feel dismissed when you called me to ask about it and I said not to worry. I’m sorry. I didn’t get it.

I didn’t get why you were always suspicious. You couldn’t help but wonder if they all knew something you didn’t about your prognosis. We shared the percentages and stats with you – and that every cancer is different … but still- is there something more? Something they were protecting you from or just felt too bad to tell you? Logically, I know the answer to this but find myself with these feelings as well. I’m sorry. I didn’t get it.

I didn’t get how confusing “options” really were. In some cases, there may be more than one choice. Whether this be physicians, medications, sequence of treatment, etc-  I would try my best to help you understand every angle, but more options many times just meant more confusion. You wanted to be involved in your own care- but the stress of too many options was sometimes too much. You begged me for my input and to tell you what I would do if it were me. I hated that question, but I hear you now. I’m sorry. I didn’t get it.

I didn’t get how hard it is to accept help. Especially the moms. This just wasn’t something you’re used to doing- but you needed it. You felt shy about admitting that you’re not sure you could’ve gotten through the first few months without the extra food, gift cards, support, and other help you were given. You felt humbled at the outpouring and just only hoped you would’ve done the same for them. You still wonder if you said thank you enough or if you missed an opportunity to give back. I’m sorry. I didn’t get it.

I didn’t get the mood swings. One day you felt confident that you’d completely beat this with no problem; you felt like you could take over the world. And for no good reason, the next day you were just convinced yours was going to be one of those sad stories people tell their friends about. The moods snuck up on you without warning. Literally anything could’ve been a trigger. I’m sorry. I didn’t get it.

I didn’t get that when you said you were tired, you really meant so much more. Sure there are words like exhaustion and extreme fatigue- but there should really be a separate word just for cancer patients, because it’s crippling. Really. Some days you really wondered how you’d trudge forward. I’m sorry. I didn’t get it.

I didn’t get how much time this really takes away from your life. I always used phrases like “Cancer is like getting another full time job” or “Life doesn’t stop for cancer” when trying to prep you for what you were about to embark on. But now they just seem like corny catch phrases. It completely took over, you had to stop doing things you love, you had to cancel plans, you had to miss out on things that were important to you. It just wasn’t in any plans- and that alone took a lot of mourning. I’m sorry. I didn’t get it.

I didn’t get how strange it was to see your body changing so quickly. You stood there and looked at yourself in disbelief in the mirror. Maybe it was extreme swelling, maybe it was scars, maybe it was hair loss, maybe it was pounds melting away when you do everything in your power to eat as much as you can. It’s hard- your appearance is tied more closely to your identity than you’d like to admit and these were constant reminders of what you were up against. You just wanted to feel like yourself. I’m sorry. I didn’t get it.

I didn’t get that it hurts to be left out. People didn’t invite you to things anymore. People felt like they can’t complain or vent about every day annoyances to you anymore. People acted differently towards you and it hurt a bit. You certainly didn’t blame them- you had even done the same to others when traumatic life events happened—and no you didn’t want to go out for drinks anyway because you don’t feel good. But you needed normalcy. I’m sorry. I didn’t get it.

I didn’t get how much you worried about your kids. For this, I’m the most regretful. I should’ve talked to you more about them- and not just in terms of lifting restrictions or germs. You worried about how this was going to affect them. You worried about not being able to keep up with them or care for them properly on your bad days. You worried they’d be scarred and confused. You worried about leaving them. I’m sorry. I didn’t get it.

I didn’t get the guilt you felt. Especially to those who are married. You thought about how unfair it was that your spouse had to pick up so much slack- mentally to help keep you focused and calm, and physically at home pulling double weight with never-ending every day chores. You understood that everyone promises “in sickness and in health” when you get married- but you still felt like they didn’t deserve this. You felt thankful when your spouse would say “go get some rest and I’ll take care of the kids” but your heart hurt overhearing them play in the other room away from you- wondering if that was a glimpse into their future that didn’t have you in it. I’m sorry. I didn’t get it.

I didn’t get that it never ends. Never. I used to tell you that cancer will be just a phase in your life. Just like high school or something- it seems like it drags on and on when you’re in it, but soon it’ll all be a memory. I’m sorry if this made you feel marginalized – it is not a phase. Yes, there are phases- the treatment won’t last forever, but you are changed now. The worrying won’t stop, the uncertainty won’t stop, the fear of recurrence or an awful end won’t stop. I hear that gets better- time will tell. And time is precious. I’m sorry. I didn’t get it.

I do have to admit; I’ve probably had it a little easier than you to start off. I know the language, I know all the right people, I work where I get treatment so sure- it’s more convenient. I watched so many of you march through this terrible nightmare with a brave face and determination- without knowing one thing about cancer ahead of time, other than knowing you didn’t ever want to get it. You’ve always been my inspiration and I love each and every one of you. Nothing brings me more joy that when I see you reach your goals and slowly put yourself back together. I love when we get visits or notes from those of you who are several years out and doing great- it’s good for the oncology nurses’ soul. Even though healthcare workers don’t really know what it’s like to be you (well, us) it’s ok. Nobody does. I just hope that I was still able to give you a little guidance and strength to help you get through your cancer treatment. Even if I didn’t get it.

Love,
Lindsay, Oncology RN

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Published by Lindsay Norris

Hi there, I'm a mom of two sweet kids, wife, and proud Kansas Citian. I've worked as an oncology nurse nearly my entire adult life. I really thought I got what it felt like to go through a cancer diagnosis, I didn't. September 2016 I was diagnosed with stage 3 colorectal cancer and my own journey began. My lowest point during the diagnosis phase was going in for staging CT and MRI scans to see if the cancer had spread throughout my body. I was crippled with fear. The first song that played through the speaker as I was laying in the MRI scanner was "Here Comes the Sun" by The Beatles. A calm came over me, and I decided that would be my theme song. Sun sun sun... here it comes.

576 comments

    • Lindsay! I just put two and two together when I saw that you were local and you were my nurse with Dr. Wagner! You did get it girl. You were wonderful and I asked you a million dumb questions. Thank you! Sorry that you are now a member of this rotten club. Hugs to you! #kickcancersass

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  6. I remember EVERY one of these thoughts and emotions- all of them. Thank you for sharing this with the world. While the journey feels like a lifetime, it does get better. Hugs and prayers!! You got this!

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  7. That was one of the most beautiful blogs I’ve ever read. As an 8 year survivor at the Westwood Clinic, I can tell you how much I appreciated and relied upon the nurses there. I never had a nurse sugar coat the details when it came to the next treatment or the long term outlook of my case. I love the entire staff there and I’m very proud of the respect and professionalism I’ve been shown. My prayers are with you Lindsay and I’m looking forward to updates on your treatments. Hang in there, we’re all here for you.

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    • Thank you for sharing.These are your innermost feelings.Your expression is wonderful.I’m a nurse too,retired.I remember these feelings too on most days.We are loving and caring individuals.However you view yourself I know you did a great job helping your patients.I can sense this by your letter.God Bless you.Praying for your recovery.Love and Hugs

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  10. As a significant other of a cancer fighter (CRC) I can say with certainty you get do in fact “get it’. I’m sorry you “get it” but want to say thank you for all you do to make those fighting this terrible disease and their families feel hope and comfort. We do look to nurses for so much more than medical care. My love is fighting the battle at the Lee’s Summit Clinic and the nurses there are truly amazing. There are not enough ways to say thank you to them or to you for sharing such a personal message. Hugs and prayers to you!

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  11. I recently lost my friend going through the same thing I am. I have biphenotypic leukemia (AML and ALL). I found out after all the chemo/radiation/bone marrow transplant I was in remission and she went on hospice. I don’t think it matters what kind of cancer you have. You got it right. All those emotions, fears, and regrets are real. No one quite understands unless they’ve gone through it. And it doesn’t end. People don’t understand that being in remission doesn’t mean you’re healthy again or that you don’t continue to hear bad, painful, heartbreaking news. You’ve gone to extreme measures to save your life and now you deal with how it hurt the rest of your body. Some dreams are lost forever and there is fear for what diagnosis will come next.
    I am a nurse as well. I didn’t get it then either. I remember trying to be compassionate and listen even when I was so busy. Now I understand so much that I never knew before. With each complication and reaction and procedure you learn what it is really like. I’ve replayed in my mind how I was with my patients. I wonder if they felt as I do when I get the question, “how are you?”. Well, I don’t want to complain about all my problems so I say “I’m fine”. So many ups and downs and recent news has me pretty down. It helps reading this. It’s nice to know someone understands how I feel. Thank you.

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    • I didnt get it before my diagnos either. Everybody who have been through the hell knows that nobody else can get it.
      I’m sure you made the pain a little bit easier for every patient you met, otherwise you wouldnt have write this.
      Thank you for spreading the word!! ❤️

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      • PS: And Lindsay, I’m so sorry that I have to welcome you to the club of those who do get it… I really hope you will be one of the survivors! And that you will keep working in oncology. A lots of love from another woman in “the club” ❤️ Ds

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  15. Not only do you get it, you covered it all and then some. 18 months ago, dx. Triple+. It’s like you jumped into my head and relayed every thought, every fear…the axe over our heads. Wondering if our families are wondering what it will be like if we don’t make it.

    I will share this in hopes my family & friends will read it, so they can get a glimpse of what our lives are like now. Thank you, prayers. Blessings. ❤

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  17. Lindsay, you went to high school with my daughters. I was so sorry to hear of your diagnosis, nobody should have to endure cancer. I lost a good girl-friend to cancer when she was young and then years later, my father. Until yourself, or someone close to you, has to deal with cancer, it is impossible to understand how much and how many lives are affected with every cancer diagnosis. Your eloquent words explain, like no other, some of the trials cancer patients must endured. I will be partying for you and all of your loved ones. 🙂

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  19. I sat at my wife’s side from 9/11/01 ( her colon surgery date) until 12/23/09 when lung cancer diagnosed just 5 days earlier , took her life. I understand completely the “I don’t get it” syndrome. It certainly doesn’t make it any easier. Thanks for sharing your story with others. I hope everyone will stop long enough to read it. Cancer is horrible and will affect every one of us b fore we leave for our heavenly home.

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  21. thank you. I was a recent widow with a 7 year old son when I was dx’ed with breast cancer (and underwent surgery, 18 months of chemo and then 3 months of radiation) .. NEVER in my life was I more infantalized. It was infuriating. And then my anger at their infantilization became one more *thing* to write in my chart… “uncooperative”…

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  22. Thank you for such a beautiful and well written letter. I am so sorry you have joined us in this battle and I hope for the best for you and your family. I,myself, am a TNBC survivor, only 3 years out. I still struggle with so many of the things that you wrote about, even though I don’t have young children.

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  23. Oh my god. Every word truth. I’m struggling today and every day with every single one of these things. Thank you thank you thank you and every person that works in a cancer treatment setting needs to see this. I am sorry also that you are “getting it” now…thank you for sharing ❤

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  24. I too was a nurse(not oncology) when I received diagnosis and remember having your same thoughts. I have used that experience in my daily practice in Women’s health. Thank you for sharing your story. Prayers for peace and healing!

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  26. Dear Lindsay, im a nurse & a cancer patient. I was diagnosed with metastatic breast cancer 6 years ago. I never had early stage BC. My negative mammograms got it all wrong. Dense breast tissue shrouds the tumors. I beat up on myself that as a nurse, how could i not know that a tumor was growing for years in my body & had spread to most of my bones without my knowing it.
    You have written a moving & brilliant piece in tribute to all cancer patients. Thank you for that.
    I found writing to be very therapeutic & because i wanted to help others with Stage 4 cancer, i subsequently wrote 2 books. I would be hinored to have you read them. Im on Amazon: ‘Metastatic Madness’ & ‘Kicking Cancer to the Curb!’
    Wishing you the very best.

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  29. Dear Lindsay! Thank you so much for your words! You dont know how much it helps us cancerpatients.
    I am a cancersurvivor and I fight for patient advocacy in Sweden. I want to ask your permission to ditribute your words to murses in cancer care here. That will help our cause very much. We try our best to educate the staff and specially the politiciens and staff in the high positions about how it really is to be a cancer patient.
    Is that ok for you?
    Please write back.
    Thank you again
    Best regards
    Madalina Ohrberg

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  31. You made me cry for so many reasons. You took the words out of my head and put them all together beautifully. Thank you for all you do and thank you for being you. I’m sad that you “get it now” but it will make you an even stronger more amazing person. Good luck! xo

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  32. This is beautiful. I have enjoyed getting to know the oncology nurses and radiation technicians I have seen the past year as I’ve gone through treatments. I have no idea how you do that job, day after day. While you might not have “got it”, thank you for truly caring. I am sorry you are part of this cancer club now. It’s a hard journey. 😦

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  34. While I am sorry that you had to get it, to get it…tell me, how can we change the status quo for women affected by breast cancer and DCIS? I have found advocacy work done with The National Breast Cancer Coalition has been very helpful in fighting this disease not just for me, but for everyone at risk for breast cancer. http://www.breastcancerdeadline2020.org

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  35. I just heard that my cousin is battling cancer for the third time – she shared your post. I didn’t get it but I have a far better understanding now – thank you for sharing and god bless you and her and all others well x much love

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  36. I worked in oncology my entire life, even worked where you work for many, many years, the gift that we did get is the friendships made and sharing such a private part of our patients lives, you are blessed, just reading this makes me feel you really did get it, may God hold you in his arms on your journey, your sharing was beautiful

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  37. Thank you for sharing! I hope you don’t mind, I have shared this on our Facebook page. We are a nonprofit cancer support community in Massachusetts and our staff is made up of cancer thrivers and caregivers so that whenever someone comes in, they are greeted by others who truly understand – because, you are right – no one understands until they have experienced a diagnosis for themselves or someone they love so dearly. Wishing you peace and blessings! Alice http://www.facebook.com/momentshouse

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  38. As I am home recovering from my 3rd surgery since my diagnosis, I couldn’t believe what I was reading: almost every single feeling, thought, emotion, experience I’ve gone through was captured so well here. Someone crawled inside my head, heart, & soul & shared my real thoughts! I first thank you for your years of dedication to the oncology patients you’ve worked with. You nurses are absolute angels. Never 2nd guess your impact & if you ever said the just right thing. You were THERE! You were the face of hope in those moments of fear! I also thank you for writing such an honest & true reflection of what this life really is like: upon hearing those frightening words, the additional testing, the ongoing treatments, the never ending fear in the deep dark parts of our mind. Finally and most importantly, I am so sorry you have now joined this club. Membership is costly & a real b*tch, but know that you are surrounded by true love & acceptance & encouragment. Thank you for getting it. Thank you for seeing it from a different perspective that only a diagnosis can bring. I will share your beautiful writing in the hope that it brings even more clarity to my own friends & family who have never understood. Thank you for writing such truth.
    Prayers to you as you embark on your own journey.

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  39. Thank you for this very truthful and heartfelt letter. So many of those were true for me. I am so sorry you have to “get it now”. My wish is that no one have to “get it” again. I have great infusion nurses. I know I’m lucky for that. I have one more treatmen then my year long journey will be over. But I have that undeniable fear it will return. If it does I will beat it again. Good luck to all of you.

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  40. Lindsey
    I feel like I could have written this post. I am a 20 year Oncology Nurse. I was diagnosed 4/1 (right??? April fools) with stage 3 IDC triple positive breast cancer. I currently work in outpatient chemo at the Institute for Cancer Care at Mercy. I have been through 5 mo neoadjuvent chemo ( AC-THP) where I continued to work. I had a BMX on 10/18 and am currently off for 6 weeks recovering. I will begin XRT 12/5 ( back to work since XRT is in the first floor and I work on the fourth, I will get zapped then head in to work to hang chemo) … Year of Herceptin … Zoladex/Femara…and a life forever changed! I am married 23 years with two teens and I thank you for sharing your story!! Allison

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  41. In the middle of chemo now…thank you for expressing every single thought that has run and is running through my mind. I, too, am writing a blog – for catharsis – and to not have to address every single thing over and over again. Best wishes for the best health.

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  43. I had a very dedicated team of doctors, nurses and professionals working for me after I was diagnosed. It was a very dark, overwhelming, and sometimes confusing time. I thank God every day for my husband, Boyd, and my girls, Sam and Olivia. There were so many people like me going through the same or similar treatment for variations of the horrible thing we call cancer. I know my oncology nurses were doing the best job they could for me. I truly appreciated them! To Lindsay, the author of this article, I want you to know, this message nailed every emotion, every situation, and every aspect of my life from knowing I had a real problem to getting the diagnosis, and from the seemingly unending procedures/surgery prep to the last day of radiation. But you’re right…you never stop thinking about it…you understand that your cancer journey is now a part of your life and has changed you in many ways. But, one thing I am sure of is that the people who love and appreciate you will stand by you and listen, and that is some of the best medicine anyone could ask for during your lifetime! Lindsay, you will be yet another person I will keep in my thoughts and prayers throughout your journey.

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  44. Dear Lindsey,

    So sorry you finally get most of it because you are going through a cancer diagnosis yourself. I so appreciate your blog. I found myself crying uncontrollably while reading this. I do not want anyone to take this wrong but there is one thing you said that is incorrect. You wrote, ” yes, there are phases- the treatment won’t last forever, but you are changed now. ”
    Unfortunately, there are some of us with Stage IV breast cancer like myself who will continue to receive treatment every three weeks for the rest of our lives. There are so many people who just don’t get it, and this is one place I think Drs. and nurses need to understand. Some of us will NEVER be through treatment until the cancer outsmarts the treatments and we run out of options. Like I said, I so appreciate your blog, there were so many things you said that so many people needed to hear. I just want them to know the entire truth!
    I’ll keep you in my prayers and pray once your treatments are over with, your cancer is eradicated for ever. My wish for you and everyone else is to ” LIVE, LAUGH, LOVE, each and every day, all year long, for the rest of your lives! “

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  45. Thank you, thank you, I can’t thank you enough for this. Every single word is profoundly true, and even though I don’t know you, or have had you as my oncology nurse, I am so grateful for these words, to feel truly understood by the healthcare professional. You have crossed the line, you have come to our side, you are part of our community now. I wish I could hug you, not out of pity or out of uneasyness , but a huge hug that needs no explanation, because we just get each other. I truly hope you are doing as best as possible with your own health, and know that your article is being shared in Switzerland. I would love to follow you on Twitter if you have a profile, you can find me at @SuissePatiente All of my best wishes to you, and to everyone else who gets it ❤

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  46. What you may also still not get is just how amazingly awesome all of the oncology nurses I’ve ever met are to their patients. How much of a lifeline they are to those they care for and their familes. You may be too close to this one to see it since you already knew yours. Mine are like a second family to me. They all give me hugs when I go back for my follow-up appointments (I’m only 1 month out from my first post-treatment, clean, MRI). They were over-the-moon excited along with me to find out I was pregnant – only 3 months after my last chemo treatment – when they had told me months earlier I might not ever be able to have children. They sat with me while I was in the chair getting one of my chemo treatments while my dad was texting me to tell me that my mom had passed away – 5 hours away from me – from her long fight with breast cancer. They all, every last one of them, signed a sympathy card and had it for me the next week, They learned my moods and rough hand gestures to know when I needed to have another warm blanket – they’d never had an oral cancer patient in my oncology center – they’d never dealt with someone that couldn’t talk, or eat, or drink. They didn’t look at me funny when I, at 36 years of age, brought a teddy bear with me to treatment because I was scared – my husband of only 6 months had spent all of his sick leave in the hospital with me and my father was in another state, caring for my sick mother. They feed all of their chemo patients sandwiches during lunch time – they realized immediately that I wouldnt be able to chew anything, and pitched in to buy me soup every week, as the hospital’s arrangements for food didn’t have soups as an option. I bought them a tray of cookies and brownies the day of my final treatment. It wasn’t enough to show them how much they meant to me. It wasn’t nearly enough. Thank you. To all of the cancer/oncology/ICU nurses out there.

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  47. This is beautiful, my 18 year old daughter just finished chemotherapy last Monday after 2 1/2 years. Your words are like they were being spoken by me and for that I am thankful. No one gets it. And I am only her mother, I cannot fathom what Gracie goes through every moment of every day. Keep pushing through, there will be tomorrow. Know that we are here and we share your uncontrollable anger……
    https://www.facebook.com/MarieGraceUmphreysGracieStrong/
    That is my daughter’s page.
    #GracieStrong

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  50. Thank you so much for sharing this I was diagnosed with breast cancer 2011 just when you think your life is getting back to some normality the big C rears its ugly head again this time cervical cancer
    Every word I just read I could relate to prayers r with u x

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