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

  1. Sygra Publishing says:

    Hi,
    This is a really inspirational book about a woman who goes on a spiritual journey and with the help of her spiritual master she overcomes lung cancer. It is a powerful story and you may find it intriguing… it is called Heavenly Daughter by N. J. Sterling and its available on Amazon.

    For more information you can also check out sygra.com or njsterling.com

    Also here are the links for Amazon US, Canada, and UK

    Like

    • Georgina Bachmier says:

      Hi Lindsay. I hope you are still fighting. I just wanted to see how you were. My cousin had been battling CR cancer and just had a clean blood test! I wish the same for you.

      My cancer is moving along dammit. But I am adjusting.

      I would be pleased to hear from you. I have shared you letter with my loved ones. Xo

      Be well. Good luck.

      Like

  2. Sue Clare-Janes says:

    This was an amazing letter, Lindsay. I am an RN who has worked Oncology and Hospice. I have been an advocate for my brother, who had stomach cancer, my Mother, who had primary liver cancer, my nephew, who had anal cancer. It is definitely different being the family and NOT the nurse. I have always prided myself as being a patient advocate for ALL my patients. And after having family with cancer I believe that it is essential for each and every patient to have a family member OR friend with them at all appointments. The patient has so much going through their head that they can not comprehend everything that is being thrown at them. I truly do not know how patients without family or friends keep everything straight in their mind. I took a notebook to the appointments and wrote everything down. It was a blessing to be able to look back and see what had occurred when. I hope you are doing well.

    Liked by 1 person

  3. wieckling says:

    Powerful words x I was a nurse for 17 years before changing careers to early childhood in 2002. I was a carer for my son Jacob (forever 20) throughout his treatment for Ewing’s Sarcoma. After he passed away at our home surrounded by 19 family and friends ‘here comes the sun’ was the next song to play on the shuffle ipod. I saw his first breath and I saw his last ♡ although it’s not meant to be that way. Once a nurse – always a nurse. I loved & hated looking after Jacob as his life came to an end. I hope I get to see a future where cancer is just a zodiac sign x

    Liked by 1 person

  4. Kristy says:

    Wow Lindsay…this was awesome to read. I was an Oncology nurse and was diagnosed with breast cancer. I thought I was a very good, empathetic nurse as well, until I was diagnosed. The scan was the worst for me…nothing but alone time and music to have it all sink in. I fell apart that day in the MRI scamner and they had to stop the scan at one point. After that day I spoke with my doctors and encouraged them to allow a support person with their patients during scans. I know now that I didn’t have near the empathy that I should have when I cared for cancer patients, but I do now. I work for a company called RN Cancer Guides and we actually go to patients Oncology appointments with them and help them understand everything. We are their nurse in the family and I love it.
    Thank you for sharing your heart because I can totally relate! You are courageous and strong and I wish you the very best! Thank you for caring for those of us who have been diagnosed with this disease that has changed our life.
    Kristy

    Liked by 1 person

  5. Charla Boodry says:

    I just reread your post and relived my life starting eighteen years ago. My daughter lost her battle fourteen years ago. The battle, which was a roller coaster, was one of hope & dispair, was also guilt because I’m still here, taking care of her three girls, watching them grow up, and she’s not. They are 27, 24, and 19 now. I’m trying to do my best, knowing it can’t be good enough because I’m not their mother. I try to “get it” but I didn’t then and even though I try, I don’t now. All you can do is your best.

    Liked by 1 person

  6. Brenda P. says:

    Dear Lyndsey,

    I had stage IVB in high school. Yes, it does leave you changed. Yes it SUCKS to be told you are brave, because you don’t have a choice….and that is what I used to tell people who called me “brave”, the other option is to die. It sucks to be left out, and feel like everyone else has no idea how small their grades/boyfriend problems are, they need to see the big picture and be grateful and happy. You will be different. I have talked to my husband about if I die, he thought it was strange. I insisted on writing a living will and have a three wishes statements. BUT over time it stops dominating your thoughts, its control over your emotions wanes and though I still worry that I may have passed some aweful genes to my kids, and maybe they will have cancer too someday, my thoughts of cancer are about once a month, instead of every minute. I remember the first time after cancer I went a whole day without crying about it and REJOICED for that. It becomes part of your history, a past event, though still occasionally something touches me deeply about cancer and I cry (like the college kid and his music video “Stronger”). It leaves you changed, but I would never trade my cancer experience for anything. I took my life for granted. I was unhappy and ungrateful and painfully shy before. I realized I didn’t want to be those things anymore, that time is precious and I should enjoy it. Today is as important as tomorrow. The sun shines, even today. Pretty earrings, nail polish, and audiobooks saved my sanity, as well as some puzzle/tricks to play on unsuspecting nurses. Anyway, truly hope this finds you well.
    Brenda

    Liked by 1 person

  7. Sandra Wheeler says:

    Hi Lyndsey,
    I have read your letter 3 times already and cry every time. I am an RN of 32 years and was dx with DLBCL February 24th, 2016. I went through chemo and now am a 15mo survivor. And ” I didn’t get it” before but I think it has now made me a better nurse. I just wanted to thank you for what you wrote.

    Liked by 1 person

  8. A. M. Guinn says:

    There is nothing I can add to this. It all has been said. So very beautifullybsaid.

    Liked by 1 person

  9. Anoymous says:

    Thankyou.
    I was diagnosed with pancreatic cancer in 2015. I underwent Whipple surgery. Since then my life as been hell. I’ve lost weight. I’m constantly tired. Pain is immense even to this day. (November 2017)
    I’m lucky that we have the NHS, here in the UK. So no medical bills to worry about. I used to Google myself insane, I would ask every Dr, or Nurse or surgeon I saw the same questions. I was looking for different answers and replies. I believed they were holding back information from me, to be nice.
    Life is a huge struggle. I get no help from anywhere. I’m in bed up to 18 hours a day. Being sat upright hurts so much. I take prescribed oxyinorm for pain. It only gives me a very short break though from pain. I’ve severe malnutrition. I don’t have the energy hardly ever to cook a healthy meal
    When eating, just the tiniest of mouthfuls makes my stomach in the area I was cut open so painful.
    I’ve lost a third of my body weight. I was nearly 14 stone two years plus ago. I lost over a stone on the operating table. Since then I’ve continued to lose weight. Just under ten stone in weight now.
    I need help. But I feel like I’m a burden on the health service. I can’t keep going back.
    I see nobody week in, week out. I see more of my Dr who’s brilliant, kind, caring and understanding than anyone else.
    I’ve asked for help with little jobs around my flat from so called friends and family. But all are always to busy.
    Like ages ago. I had a bad fall. I collapsed. Knocked myself out.
    I was in bed for three days. Struggled to go to the bathroom. I didn’t eat anything for those few days. I asked a relative if they could call around. Explained why. I was told. No, I’m to busy. All I wanted was a small meal making for me. I would of even paid them.
    I do have moments when the pain is so immense where I’ve considered ending my life. At the moment. I’m not suicidal. But at times. The pain a long with the most horrible fatigue which comes from nowhere. Is so unbearable that I’ve broken down crying and pleading with “God” to take me. Then when nothing happens. I’m calling him every four letter swear word in the dictionary.
    Later the oxyinorm or morphine which ever I’ve taken kicks in. I then get a hour or two of reasonable comfort. I try and get out. Some days I struggle to drive even 2 or 3 miles. Due to fatigue. Other days not so bad. When I occasionally visit the North of England. A drive that should take maybe 5 or 6 hours will take 12 to 15 hours. Due to having to stop at every service station on the motorway for a short break.
    I’m so sorry that you are going through this horrible disease. I am pleased though that you understand what cancer patients go through.
    If only people I knew had a tiniest of understanding of it. Maybe they wouldn’t be so wrapped up in their comfortable life and be decent and come forward to help out from time to time.

    Liked by 1 person

  10. Thank you for writing for this…I have been looking for the right words to give to the medical oncology professionals who were responsible for my treatments. Please don’t get me wrong…they did their jobs well, or at least most of them did, but they never quite understood how much energy it took to bring myself to the infusions or radiation treatments. They never really understand once you have been diagnosed the true sacrifice we all have to face…everyday decisions like are we strong enough to make something as simple as a can of soup or can we even eat the thing we want most because it tastes so bad that it makes you retch or you can’t have it because of dietary restrictions put on you for the type of cancer you have…in may case it was rectal and I was reduced to white bread and pasta (NO fiber), proteins, and fats – if I could tolerate the taste of consistency of them – and I am diabetic to boot – so instead of losing weight because of inability to eat or being too sick to keep much down I gained over 50#’s on my journey.

    In the end it was all worth it though as I had a prefect clinical response to my treatments, no matter how horrible they were, I was able to forego surgery. This is not a luxury afforded to most I know. I am lucky, yet some days, even 9 months post “surgery”, as I still had to undergo the procedure which could have ended very badly for me, I do not feel so lucky…the chemo left my hands and feet ravaged by nueropathy that I had worked so diligently for 20+ years to avoid with my diabetes, I now have recurrent bilateral cellulitis and edema, which is subsiding more and more but will never be totally gone for me now, and the constant nagging fear that the next appointment will turn up something that is totally out of my control anyways. I think that’s the toughest part of all this for me – the realization that not only do I not have any control now over my life, but I didn’t really ever have control – none of us do…

    I hope you find yourself in a good place in life now. I thank you for being so candid in this. You said the things I have wanted to say not just to people in the medical world but to others as well. I work in clinical research so I understand and am around medical professionals all day long but your perception changes once you have been through what we have. I am thankful for my successes with my treatments and I can live with the resulting residual side effects from the treatments – they are tolerable. All I truly want though is to help others through their struggles by being honest with them…and to help them not just get through it but come to terms with it and maybe someday prevent someone else from having to struggle so hard with the tough everyday decisions we have to face when dealing with this disease. ❤ Much love…D

    Liked by 1 person

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