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

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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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About herecomesthesun927

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

  1. Rachel Chatterley says:

    Thank you for writing this💗
    It is so spot on the way I feel as a patient and though I love my Drs and nurses I always think to myself as they are talking ” you don’t REALLY understand “.
    It’s not their fault and I know they are doing the best they can with what they know.
    Some thing that has been bothering me that my chemo Dr said that I haven’t really talked about was that he felt good about my diagnosis and that it was just a common case of breast cancer. Like I had a common cold and just needed some vitamin c
    And a bit of rest. I’m 39 and I have stage 2 beast cancer. It has gone into my lymph nodes.
    This is the scariest thing that has happened to me in my entire life and he just doesn’t get that. I know unless you have personally walked this journey that you won’t 100% understand. Your story has helped me and I’m not glad that you’ve had to go through this but I am grateful that you are out there for people like us.
    What you have said means so much to me . Thank you agin!

    Liked by 1 person

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  3. You know what I don’t get? Why did the very program which was designed to help women with breast cancer lie to me and betray me? Actually, I’m more upset now that I do get it! The Breast and Cervical Cancer program in Florida did a good job at providing mammograms and a biopsy, but committed crimes through loop holes in our system.
    I was diagnosed with breast cancer in April of 2016, obtained Medicaid shortly after, and sought treatment at UFHealth Shands in Gainsville, FL because I thought that would be where I could get the best treatment. I still believe people who have good insurance and/or money can get quality healthcare there.
    I had no idea how Medicaid would try to first steer me. Three different people tried to direct me towards one particular doctor. That’s against the law, but I can’t prove that they did this because it was done in person and over the phone. Then, when I requested gene testing it was scheduled for May 11, 2017. That would have been AFTER my Medicaid was to expire in April of 2016.
    Then, I was turned away from Shands and basically sent home to quit smoking in June. I think they were surprised to see me return in September for treatment smoke free. I signed consent forms for a bi-lateral mastectomy with spacers immediately and implants to be done later. I even made arrangements to obtain a home hyperbaric chamber because I felt oxygen was necessary to my healing and didn’t expect Medicaid to pay for this. All I needed was a doctor’s prescription and friends were willing to help me with this. I also knew that nipple reconstruction may not be paid for because the oncologist said something about referring me to someone who does 3D nipple tattoos.
    However, I was absolutely terrified when I caught the plastic surgeon’s assistant had typed in the computer that ONLY my left breast was to be removed during a pre-op visit. Now my medical records have been altered to cover up the lies.
    I’m so glad that I caught them and now I understand just how easy it is for Medicaid and doctors to violate Informed Consent laws and my constitutional rights to have a say in what they do to my body. I can’t prove conversations between myself and the three people who tried to steer me. I can’t prove that Medicaid and these doctors decided what treatment I would get and had no intention of telling me. Having breast cancer is horrific enough without having to fear those who are supposed to treat you! Still, I’m thankful I caught them or else I would have been put at greater risk if I had awakened to having my left breast cut off and sent home as if I would be O.K.
    NO I AM NOT O.K. and I fired Medicaid! Now, I’m losing my home, have breast cancer, am not in treatment, and have no insurance!

    Liked by 1 person

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  6. Jane Roberts says:

    This is a so true and sums things up so well. I’m not an oncology nurse but have nursed many people in community fighting and dying from cancer. It is wrote beautifully, Thanks Lydsey for summing up how a CA diagnosis can affect a health professional. I agree with you wholeheartedly. I now know ……we both get it. 💖💖💖💖💖💖💖

    Liked by 1 person

  7. Jane Roberts says:

    To add to my previous comment I forgot to mention Lydsey, I have been diagnosed twice with Cancer whilst working as a community nurse but could not edit my reply xxxx

    Liked by 1 person

  8. Rebecca says:

    This made me cry. I’m not on the cancer side of things, but rather the nursing. I’m only a nursing student, graduating in May. But this touched me on a deep level. I think this principle can go towards anything a patient is going through. At the end of the day, as much as we try, we just don’t get it. I try to be as empathetic as possible, but that still doesn’t mean I get it. It’s an amazing eye opener to realize that I will never be able to fully get it. I just have to do my best to be there for my patients and understand as much as possible. Thank you for this lesson, Lindsay.

    Liked by 2 people

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  10. Stacey says:

    I can’t stop reading this. It’s like my thoughts every day since September 2016 on paper. So true, so real – I can’t help but share with my friends and family. Thank you from a current breast cancer patient xx

    Liked by 2 people

  11. Angel Bass says:

    Thank you so much for this. Every paragraph, every word, every understanding. I will be praying for your journey as I continue in mine.

    My BC journey started August 2016. I was four months pregnant. Chemo started immediatly. Things are going well. My daughter was born Dec 1 and is just perfect. I have five other children at home as well. I had my lumpectomy two weeks later and started chemo back up last week. I’m overwhelmed by it all still.

    I have a long year ahead. And I’ll read ur words for comfort many times as I continue forward. What peace they bring. Thank you… blessings!!

    Liked by 2 people

  12. Ella says:

    My mom was diagnosed with terminal stage cancer. Reading this helps

    Liked by 1 person

  13. John says:

    One of the replies had this comment: “But when handled correctly cancer also leaves your mind and soul in a better place” In addition to all that you write, and I agree with it all, I found that there is a blessing. I no longer sweat the small stuff and appreciate the non-tangible things in life. Thank you for putting so well into words what is in my mind. (Leukaemia & marginal zone lymphoma patient.)

    Liked by 1 person

  14. Pauline Schmidt says:

    https://wellspring.ca/london-region/

    This is an awesome place for non-medical cancer support! No one should have to go on this journey alone.

    Liked by 1 person

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  16. LFCT says:

    Reblogged this on Little Fighters Cancer Trust and commented:
    This post is so true… no matter how one tries, you can NEVER understand what a cancer diagnosis is like if you have not gone through it yourself…

    Liked by 1 person

  17. English Prof says:

    Everything you say is true, and only cancer patients get it. No one at my current workplace knows I have persistent cancer, and I plan to keep it that way as long as I can. I do not like the pity or the awkward conversations. I am still young with two small children, but I struggle to feel alive. I am going through the motions. I am a professor; reason and logic are important to me. Often I think about how I’ve viewed cancer patients I’ve known in the past, and that is (sorry to say) with suspicion–as though they are less logical because they are on the edge of a precipice and cannot see clearly looking in to the darkness of the abyss below. But I wonder now if we cancer patients just see too clearly, making us strange to everyone who is still worrying about the details. I don’t sweat the small stuff or even most of the the big stuff. That can be a good thing, but it can also make you feel like the walking dead.

    Liked by 2 people

    • John says:

      A suggestion – Do some volunteering at your local cancer centre. You will find patients really wanting to talk and share. It will give you a chance to share and I guarantee you will come away far from feeling like the walking dead. You will leave with a bounce in your step and a smile on your face. Count not sweating things as a real blessing. Like you a professor, but retired, and with two cancers.

      Liked by 1 person

  18. Leonard Perles says:

    For those that didn’t get it Do they get how fortunate they really are that they didn’t get it

    Liked by 2 people

  19. Helene s says:

    When I read this it was everything I have felt since diagnosis but have not expressed as eloquently as this . Thank you for such affirmation . Beautifully written and we can’t expect people to get it . I hope there are less people that have to understand this personally . I am using whatever I have to get through this .

    Liked by 1 person

    • Travis Calhoun says:

      Wow. Thank you so much for posting this Lindsay. I knew people had to feel like I do but I didn’t know how to talk to them until I joined this forum. It helps out tremendously and your article did more for me than you will ever know. You touched on everything that I’m going through. I will be reading this for inspiration forever. Thank you. I’m not in this alone. Thank you. Good luck with your own treatments and please write again.

      Liked by 1 person

  20. Linda Woodrow says:

    I just celebrated three years out from ovarian cancer. I was 69 when I was diagnosed. I was very fortunate I was sick only one day, I had two ports one in my shoulder& one in my side that caused a lot of pain but by the grace of God I’m a survivor. I appreciate you writing this & I hope it helps everyone as much as it has me. I don’t think anyone gets it until they have been thru it. Thanks!

    Liked by 1 person

  21. Wendy Denham says:

    Thanks for sharing! I was diagnosed with Triple Negative Breast Cancer in Feb. 2015 and a patient at the KU Cancer Center too. Your words ring true and I’m sure you have been and will continue to be a blessing to anyone coming under your care! I am 1 1/2 years into remission now thanks to the fabulous staff there and hope to continue down this path long into the fiture😊. Prayers that you can whip it and for all those affected by this dreaded disease🙏

    Liked by 1 person

  22. serenaklaver says:

    Thank you for writing this as it can take the right person, at the right time, with the right lens and approach for others to listen. You are very right that not everyone gets it, except for those that have lived it. My husband experienced ALL (Acute Lymphoblastic Leukemia) at 24 years old followed by intense treatment and a stem cell transplant and later on a relapse in health with a diagnosis with a chronic lung disease which resulted with a double-lung transplant and later rejection. He fought long and hard and it was an everyday battle that many didn’t know even an ounce of what he endured. I tried my best to understand and opened my heart wide open to him which Im grateful of. Even though some believe ignorance is bliss, it was empathy, compassion, education, advocacy, active listening, presence, and real love that served us.

    Liked by 1 person

  23. david says:

    What a fantastic way to let people without cancer know some of the ways it affects those who have got cancer reading this has changed the way i see how a cancer patient gets through the day
    a very close freind had cancer and is still living with the fear it might return and i have lost people to cancer i hope i can give better support to my freinds going through this dave

    Liked by 1 person

  24. Kristen Allen says:

    ❤️

    Liked by 1 person

  25. YAPCaB says:

    What an incredible post. I have stage IV prostate cancer, now castrate resistant. This post so accurately captures what I went and am going through. It helped me to read this. Thank you, Jim

    Liked by 2 people

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