[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

sun_pin

Advertisements

560 comments

  1. I lost my mum to inflammatory breast cancer 5 months ago and reading this really moved me (sitting here with tears running down my face). I only managed to spend the last couple of weeks with her, she lived in Germany and I am in Ireland and life always seemed to get in the way… and now I feel so guilty that I not tried harder to see her more often.
    Would you mind if I try and translate your letter in to German, I think my sister and my mum’s husband like your inside?!

    Liked by 1 person

  2. Wow, thank you!! Don’t want to burden you further, but some cancers you can’t share and get a support group; because they are not appropriate to share, in unspeakable parts of your body and or you are hiding your vulnerabilities, and end up hiding.
    I am so glad you are you, and have shared witih us!! It really, really helps!

    Liked by 1 person

  3. I am four years out and yes, it is so very accurate. I appreciated reading your comments and did not want your letter to end. I absorbed the truth in each sentence. You have joined the club no one wants to belong to. Thank you for your letter and keep on going on!

    Liked by 2 people

  4. The most dreaded words in the English language may be “You have cancer,” but I can assure you today that there is life after cancer and it is known as faith and hope. Many of our cancer patient failures are people who did not realize how close they were to success when they gave up the fight. In three words I can sum up everything I’ve learned about life and my fight against cancer: “IT GOES ON”
    You know every Thursday I get up and look through the Vista newspaper obituaries of people who have passed away in Welkom. If I’m not there, I carry on living my life with passion and joy with thankfulness in my heart that God has spared me another week.
    I encourage you all to maintain this optimism, to control your stress, to eat a balanced diet, to exercise daily and the most important of all is to have faith in your God.
    Cancer touches us all … personally, family and friends. But there is hope and healing along the path of our and many other’s journey. The operations, chemotherapy and radiation treatments you have are straight from hell, but the chances of long-term survival have risen from 0.5 percent to more than 70 percent.
    I went to Welkom Volkskool, Aurora, Welkom High and Tech College and started my apprenticeship on Pres.Steyn Gold Mine and where I worked as an Electrician. I was then transferred to Erfdeel G.M. as a Services Foreman and worked myself up through the ranks and eventually working for Harmony G.M. in charge of Engineering Training of Junior Engineers, Artisans and Apprentices. I retired after many years of good health and thought that the time has now come for me to sit back and relax.
    I learned, in 2008 just before my 59 Th birthday, that I had an extremely aggressive bladder tumor that was malignant i.e. cancer. My urologist Dr.Sandy Bruns told me the survival rate was good and that made me feel better. But then he explained that there was a 60% chance that the disease could take my life if it had spread to other parts of my anatomy. As the urologist was telling me the news, from out of nowhere, I just got this deep seated feeling that people would come into my life and assist me in the big fight that lay ahead.
    They were Daniela my partner who was and has been with me through all my ups and downs, my family and children Louise and Edward, Dr.Sandy Bruns and his staff and as I found out later, my Oncologist and her staff, Dr. Antoinette Lion – Cachet, my angel in disguise .They have all guided me to where I am today – a cancer survivor in remission.
    The operations were performed, the tumor was removed, chemotherapy followed with all it’s nasty consequences, biopsies were taken, cat scans and sonar’s performed, internal exams and blood tests were done. Chemotherapy is the use of medication (chemicals) to treat cancer. More specifically, chemotherapy typically refers to the destruction of cancer cells. This treatment was and still had the most side affects to me such as nausea, vomiting, loss of appetite and a general feeling of “why me Lord”. This was the time that you did not want visitors and needed to be left alone especially the first three days after the chemotherapy. Then to add insult to injury I went into a coma due to shock and Diabetes was diagnosed and landed up in hospital for 4 days. Thankfully I am now on Insulin and a strict diet and my blood sugar is under control.
    Then the final hurdle of 20 treatments of radiation had to be completed with the resulting body burns, itchiness and internal aches. After a life of hard work, sport and lots of physical activity I realized that I had become susceptible to fatigue and I could do nothing about it. Everyday I would doze off for a few moments and then came to the conclusion after reading about it on the internet that this was and still is with me at present the results of my treatment.
    It is now Sept 2016 and I’m very happy and blessed to still be alive. I will be having my now annual examination appointment including my blood tests with Dr. Antoinette Lion – Cachet and a sonar examination with Dr. Sandy Bruns in October. I am positive that this will just be another challenge and I will overcome this little problem. I am now 8 + years in remission, confident that I will still be all clear but still always nervous, and to still able to say, I love God and I still love life! No matter how strong your faith may be, the little man sitting on your shoulder whispering negative things into your ear is a phenomenon that all cancer survivors have and will always find difficult to overcome. I have found that it is hard to explain this irritation to your fellow man who does not understand the complexities of the possibility that the cancer may return. So to all readers of this article … please show some understanding and less of the “everything is all right” reaction. It is a physiological battle that stays within us survivors till the day we die.
    So …….
    Don’t say your world and life has stopped following your cancer diagnosis. You can make the choice today to turn it around so that your life will only just begin now. It is a good experience to learn how to overcome a cancer diagnosis and to be in charge of your body rather than a victim. Sometimes, no matter how much faith we have, we lose people. But you never forget them, and sometimes, it’s that memory of them that gives us the strength to carry on. Share with others and be positive in your faith and daily living. This is what I call the good medicine.
    I am so glad that I paid so little attention to certain people’s so called good advice; had I listened to them, I might have been saved from my most valuable and meaningful mistakes that have guided me in life thus far.
    In our lives, especially with cancer we reach rock bottom. We experience what we call HELL. For each of us it’s dressed up differently, but for all of us it is dark, tough and devastating. This HELL can be our awakening. Some people call it a breakdown; I believe it is a breakthrough. Yes a breakthrough. Darkness cannot drive out darkness, only light can do that. And the light I am talking about is Jesus Christ … our Lord and Saviour. Through Him, with Him, everything is possible. We must be optimists and convert our major stumbling blocks into our faith’s stepping stones and continue fighting this scourge know as cancer.

    Let your prayer always be:
    “Cure dear Jesus Christ the cancer that seeps within my soul, You Lord are the answer. You can make me whole.”
    Finally I would like to end with these few words:

    It’s a terrible disease that affects millions of lives.
    It affects sons and daughters; husbands and wives
    People take the news in different kinds of ways
    It makes some people cry and puts some in a daze
    Some people pray and fall down to their knees
    But you’ve got to be strong to beat this disease
    This fight can be won believe it or not
    You just have to put your faith in God
    And pray a whole lot
    So keep your head high, you’ll soon know the answer
    And you too, Will be a cancer survivor,
    Nick Hagemeier.

    Liked by 1 person

    • Can’t believe this comment after reading such a beautiful and heartfelt blog from Lindsay. During my treatment the worst thing that people said to me was that they were praying for me. If you are religious then great but please do not use someone else’s blog to preach and please do not tell people you are praying for the unless you know they would appreciate this. To me it was like someone saying ‘i think you are going to die’

      Like

  5. Dear Every Oncology RN,
    Thank you!
    For being there and trying to help us get through the procedure of the day!
    For being honest when answering our many many questions!
    For being patient on the days we are having a little pity party!
    For taking an interest in the time we are with you!
    For allowing us to see, when we are having chemo, the passion you have for your job.
    Thank you for being good at your job!
    Thank you for being a nurse and having a hand in saving my life!

    Liked by 3 people

    • The nurses are the best! They really make a difference in your life while your undergoing treatment. It must be very difficult to be an oncology nurse. To see patients of all ages, different degrees of cancer & know that some won’t make it. I just want to say Thank You to all of them! You are truly helping us! Especially the one that wrote this fantastic article. Good luck & keep fighting! #cancersucks

      Liked by 1 person

  6. I loved this. I’ve worked as an oncology physical therapist for almost 50 years. When I was diagnosed with breast cancer over 24 years ago, I remember first thinking ” I work here. Aren’t I immune?” Duh.
    I had difficulty focusing enough to pray, but I did ask God to not let me act like an idiot in front of the people I worked with or treated. I pushed myself harder than I would have allowed my patients to push themselves. I still am not sure why that was, but I regret it.
    Cognitive issues were not discussed as often or openly at that time, but I was aware that I wasn’t processing information as quickly or as well as I had before and it terrified me. I developed an appreciation for how difficult it is for our patients to process and retain all of the instructions they receive from their many treatment team members.
    I saw this blog post on Facebook and it really struck me. Thank you for it.
    I can tell you that my cancer experience made me a better therapist and also a better caregiver when my mother went through her own treatment and death from colon cancer.

    Liked by 1 person

  7. I want to tell you this. No, you can’t really understand from the outside, but as an oncology RN you are invaluable. Mine often detected problems before they became major issues. After my rads, if I was asked into an exam room, I knew something was up. They saw an infection before it became life threatening and treated it, they saw a massive weight loss and brought in a dietitian but most of all, they saw me. I remember silently crying while laying on Smokey (rad table). I said nothing but when I was done, the oncology RN tracked me down to the chemo lab just to talk to me and offer comfort.

    That says everything and I still cry when I think about it. So maybe you couldn’t walk in our shoes, but you made them a hell of a lot easier to stumble around in ourselves. I wish you health and an oncology team as great as mine.

    Liked by 2 people

  8. Thank you so much for this post. I can not express how much I appreciate reading every word. Cancer entered my life just over 4 years ago and I can so relate to every single word you wrote so beautifully. It’s like you put down in words every thought feeling and emotion. Sending you much love as you continue on this journey that none of us ever thought we would have to take. You are truly wonderful. xxx

    Liked by 1 person

  9. I think that you would find When Breath Becomes Air an interesting book. It was written by my neices’s husband Paul Kalanathi – a neurosurgeon who was diagnosed with Stage 4 lung cancer when, as with you, he was on the giving rather than receiving end of this shattering news. He was a remarkable, lovely, very special and intelligent guy. It became an international best seller almost immediately
    and is now published in its 40th different language. It’s a beautiful but sad story and I’m sure you will relate to a great deal of what he says. Thank you for your post. My very best wishes. Hamish

    Liked by 2 people

    • I read Paul’s book after a friend had posted a review of it on Facebook. It is a FANTASTIC read! I have such a deep appreciation for my medical oncologists, their nurses, my radiation oncologist and his residents, my neurosurgeon, his residents and his nurses, my thoracic surgeon and his nurses… the folks in MRI… the folks in every scheduling department… anyone and everyone who has ever had to be part of my “story”. I feel as though I have a home away from home 180 miles away from home! Reading Paul’s book was an incredibly interesting insight from “the other perspective”… what my doctor’s and their residents are facing. I don’t know how medical professionals can be as caring and dedicated as they are. I’m always telling my docs that they need to take good care of themselves, because I’m not done with them yet! I’d be crushed if any of them had to face what I’ve been dealing with. It just somehow isn’t “fair” that the people dedicating their lives to helping others survive should have to scratch and claw for their own life. I swear, I hardly gave my husband an ounce of peace while I was reading Paul’s book, as I constantly “had to” read paragraphs and pages to him! Although I knew how the story would end, I knew that I had to read the book. I couldn’t put it down.

      Liked by 1 person

  10. I am the survivor of a spouse who died from cancer. Yes, you captured many of the hard, hard points that I experienced when my husband was diagnosed, and then suffered and died from adenocarcinoma of the duodenum.

    Maybe someone already shared this perspective, but I thought I would add my voice of what most people don’t get about being the caretaker of a cancer patient and how it feels to become a widow.

    Most people don’t understand that with those three terrible words, “You have cancer” your whole world changes. You simultaneously feel guilty for being relieved you didn’t receive the bad news, but also terrified and shocked that your partner, lover, best friend, spouse, and father of your children just did. What do you say to this amazing person who has shared life with you for the past thirty years? How do you bridge the gulf that just opened up between you and him since he is the one ill and you are not. Those words are the beginning rumbles of the largest catastrophic earthquake you and your marriage have ever experienced.

    Most people don’t understand that you must now become bigger, stronger, and tougher than you have ever been before. Not only are you carrying the load of two since your spouse is either too ill or recovering from a medical procedure to share in the burden of running the home, caring for the children, and working. Everything is yours to handle, even driving him to and from appointments. Your life has never been less your own then from this point on. And while shouldering the extra work, you need to keep a brave face. No whining to him about working harder and longer, no crying out of fear since he is dealing with his own inner demons, and no fussing about the unfairness of it all. After all, you are the lucky one who is still healthy. The family needs you now like it has never needed you before.

    Most people don’t understand that pitying doesn’t stop with the cancer patient, but extends to include the whole immediate family. You are now “that person” with the sideway glances, the hushed whispering between two friends when you walk into the room. You are also asked, “How are you doing?” and have no better answer to such a complicated and complex question since your emotions are moving like the ocean waves in the midst of a massive storm with the huge heaves of up and down. You gain an unwelcomed notoriety as others find your situation interesting either with morbid fascination or relief that its you and not them. You lose your privacy as you work to accept the offers of help. Now people are stopping by your home at all hours of the day with meals, groceries, and other offers of support; all of which are needed yet rob you of downtime to relax as you now must make small talk as a form of thanking them for the tangible support.

    Most people don’t understand that as your spouse inches toward death so does your identity and marriage. You soon will no longer be his spouse. Sex often stops early on as the fatigue, pain, recovery from surgery, and medication makes physical intimacy difficult, too painful, or not possible. You are still healthy and long to savor the last moments of this marital connection but you didn’t realize that the last normal sexual experience you enjoyed which seemed normal at the time was really a form of a good-bye to that part of your relationship. You are no longer wife, you are now caretaker. You focus on aiding with medication, helping him dress or bath, and a myriad of other things that adults usually handle on their own. He depends on you for support, to be an extra set of ears during doctor visits, and to help him when the pain breaks through and requires regular dosing for hours at all times of the day until it’s back under control. You are his shoulder to cry on as he worries about leaving you and the kids, as he faces his own fears of dying, and as he mourns the loss of the life as he knew it. You, however, must find such support elsewhere, whether it is at a support group, with your mental health counselor, or a trusted friend. He no longer can be that person for you.

    Most people don’t understand that when he dies, many of these realities become permanent as you carry the stigma of death. You now represent the person no wants to ever be, so many of your friendship, especially couple relationships fade away or suddenly end. You sit alone as others go out as couples and do things you used to do with them, whether going to a concert, dinner, or other such activities. Your isolation is worse than ever since now your best friend/spouse is gone and your friends don’t know how to handle who you have become. You lose yourself as well. You wonder who are you now. Your whole life has been turned upside down and you no longer recognize the person you are becoming. And you never asked for any of this. This happened to you instead of you being a part of the reason it occurred. Divorced people think they understand but they don’t—they face a different kind of pain than widowhood. The two realities, although appear similar, are radically different. Only those who have been widowed get what you are experiencing. You feel cut off from the world without any doing anything on your part to have contributed to it. Just like him, much of your previous life has died as well.

    Thank you for sharing your experiences, Lindsay. It really resonated with me. I hope you are on the mend. I know you are already a more empathetic nurse. I can see how this experience has radically changed you, just as it has changed me. I deeply appreciate your raw honesty. Thank you for letting me use this forum to share a bit of my experiences as well.

    Best wishes,

    Kerry

    Liked by 4 people

  11. Wow, woman, you’ve been in my head I see, smiles. I’m just starting this journey with Stage 3 Breast cancer and you nailed every emotion. I’m so sorry that you also must take this journey as well, but thank you for sharing this with the world–I wish it was reading material for everyone

    Liked by 1 person

  12. Thank you and thank you for the time you and your colleagues afford each and every one of us Cancer Warriors. Ironically, life with, appears to be the greater challenge. If I had a penny for every time that I heard or continued to hear ‘I’m sorry. It’s not the news you want to hear but…’

    We just want to get on with life! Cancer does not define, it makes us stronger!

    Liked by 1 person

  13. Lindsay, I too, am an oncology nurse. A pediatric oncology nurse for almost 10 years and you beautifully expressed every experience and emotion that I have been going through with my recent breast cancer diagnosis. Thank you and God Bless.

    Liked by 1 person

  14. This is a wonderful sentiment. I lived through a rare stage 4 lymphoma and was in the hospital the huge majority of 6 months. When I WAS home, I was pretty much in a bubble. You are so right, the nurses were kind – most of them anyway, the doctors were all matter of fact, probably due to dealing with this illness 24/7. And friends and family were unsure how to act or what to say. I am grateful for you writing this. I hope other nurses and doctors see this and can adjust their attitudes somewhat. You are also right, that if you have NOT had cancer, you don’t get it.

    Liked by 1 person

  15. Thank you Lindsey for your beautiful heartfelt blog . I truly think you have what it takes to be the best Oncology RN. You have heart & compassion and that goes a long way.
    I found a lump in my right breast on Sep 7,2015 . Everything moved so fast, thankfully. I had several appointments each week, mammograms and biopsies. On October 26th , after 8 biopsies I was told that I had stage 2 breast cancer. I was so scared that I would not get to see my son grow up or grow old with the love of my life, Keith . Having his support along with my son , Nicholas & my best friend , Stacy kept me sane through the whole ordeal . My mom moved in with us for 6 months until I finished my treatments . My sister & 2 brothers , my in laws and other family & friends called me to check on me constantly.My husband said “whatever happens we’ll get through it together and besides I was always a leg man ! ” We decided not to tell our son until 4 days before my mastectomy because we knew that he would worry too much. Telling our 10 year old that Mommy had cancer was the hardest thing we ever had to do. Harder because we had just lost my Dad, his Poppy to stomach cancer 15 months before. I knew I had a better chance of survival but how do you convince your child that Mommy was going to be ok. He was so scared that Mommy was going to go to Heaven too soon, just like Poppy. I’m not going to lie to you, as soon as I heard I had cancer I automatically counted down to 6 months cause that’s all my dad got.Then I gave myself a good kick in the butt and said” you’re going to beat this and worrying won’t help!” Nicholas would play and sing along to Fight Song & Stand by You almost everyday to keep me smiling. He said” Mommy ,you may be losing a part of you but you’ll still be here and that’s what’s important!! As long as you have your heart and your smile you’ll be ok !! ” Smart boy ,hey ? I had my mastectomy on November 2, 2015 followed up with 4 low dose chemo treatments. On March 11,2016 I rang the Bell of Hope surrounded by my family & friends.
    Through the whole ordeal I had an awesome surgeon that came back from her rounds just to meet our son. She left with tears in her eyes after Nicholas thanked her for saving my life ! I also had several amazing nurses that made me feel at ease with just a wink and a smile .

    So Thank You, Lindsey from the bottom of my heart for being you! You did get it,even if you didn’t realize it at the time. That’s what counts.

    Like

  16. Some days of course you would rather not get it at all. You would rather forget that you are a member of this club which changes your life, your aspirations, your very survival. Your post is inspiring because it get be difficult for anyone to say they don’t get it. I suspect you got it a lot as a nurse and many will have benefitted from your advice or simply being there. I know I get my treatment directives from the oncologist but it is the nurse practitioner who listens, who spends that vital time you just sometimes need to move on. I hope your own treatment goes well. If you go back to nursing you know you will know.

    Liked by 1 person

  17. Lindsey, until it happens to you, you just can’t GET IT! May you experience love, support, peace, strength and healing! Cancer is a journey; not one we ask for or prepare for – but a journey!

    Liked by 1 person

  18. Well here I am, just diagnosed 10/14/16. Hysterectomy due to endometrial cancer. I am still waiting for the biopsy results from the removal of all the inside lady parts as well as some swollen lymph nodes. Swollen lymph nodes is the scariest thing for me right now. Two weeks to wait and wonder, what if… Thank you for your letter to us. I am so new to this now and asked myself, how is she reading my mind, my every thought? I thought I was obsessing, abnormally, but I guess we all do when we have cancer. I have kept my diagnosis as private as I could to this point; only close family and very few friends know. I may come out of this without treatment however, swollen lymph nodes are keeping me on guard. I am preparing for the worst and praying for the best. That is how I handle difficulties in my life, always have. Some think that is not how I should think. I just smile politely and think my body my thoughts, I still love you. Others accept the reality of cancer and offer their prayers. I have a dear friend who just sent me a bottle of Holy Water! I love her so much!! I am strong and I will get through this because I love my life and I love my family and I love my friends, and they love me back.

    Liked by 1 person

  19. This is so beautiful, for some reason I can’t stop crying, it validates all of my feelings. This is a very lonely battle, regardless of how many people we have in our lives. Knowing that other women (men) feel the same as you is very helpful.
    As I go into my first recurrence for Ovarian Cancer, it’s nice to know that the oncology nurses are as caring as they’ve always portrayed.

    Liked by 1 person

  20. It takes a very special person to be an Onocology Nurse. Your not just dealing with the physical side of an illness, but the emotional fear that goes into living with cancer. All the beautiful, thoughtful words that have been expressed, have touched my heart. After surviving Leukemia after 14 years. I will never forget the eyes of that wonderful nurse, who gave me those words. I believe I felt more sorry for her, than I did for myself. Having to look into the faces of those who will be going through so much. There love and compassion is overwhelming.

    Liked by 1 person

  21. This is so very touching. My husband was diagnosed with stage 4 liver cancer this past June. The last 5 months have been exhausting with 3 hour trips to St. Louis, appointments for scans an on-going chemo treatments. We have had colon surgery and he will be having Liver surgery the first week of December to remove the right side of his liver. I remember the dreaded moment after his colonoscapy when the Dr and Nurse confirmed his diagnosis. I’ll also never forget the two nurses who dragged me to the bathroom and my toes scraping the floor after I got weak in the knees and lost my ability to stand. They were so comforting and prayed for us and talked to me about how every cancer story is different and technology and treatment has come a long way. They will never understand how comforting their words were to me that day. Your mind starts taking you places you dont want to go and its still a daily struggle for me. My husband is 40 and I am 35. We have a set of 11 month old twins and a 5 year old. So, we fight, every day. The nurses and staff at our clinic are amazing. He has commented often that he is so glad he chose to have treatment there. The nurses, staff and even patients become family. I truly love them all. My prayers go out to all of you fighting a battle. Fight! Continue fighting because We are fighting with you. Love and prayers to you All.

    Liked by 1 person

  22. Thank you for your words I was my mom caregiver fro 7/2013 until 12/2014 she had stage 4 lung cancer and they gave her 3 to 6 months to live she did the chemo and it put her in the hospital everytime because it made her so sick but she had 17 months . She fought so hard her body just could not take anymore the nurses at the oncology department was great and now that it looks like my husband has cancer we are waiting on biopsy results I am praying that these are just as good as my mom’s. Not sure yet what we are in for but my husband is the type that has always been it is what it is and I will only go when the LORD is ready for me but he has never in the 35 years we have been married been sick other than a cold so I am not sure how he is going to handle this. Lots and Lots of prayers and Love.

    Liked by 1 person

  23. As a mother of a breast cancer patient it is the guilt of why my child. I’m old I should be sick…I am afraid sometimes of hugging my own child because I don’t want to cause any further pain. The guilt of laughing or smiling when my baby is so sick. I try…but mostly I cry when I am alone. I love her so much!

    Liked by 1 person

  24. That was lovely thank you for the acknowledgement. I progressed to stage 4 last year and so much of what you say rings true. I always feel like an outsider now. Rarely speak of the fatigue and joint pains to avoids the sad looks. Yes brave is a strange term when you don’t have a choice but to deal with it everyday, it just becomes your new normal. I don’t feel like I am fighting ‘it’ I just get up every day and do what I need to do, rest when I need to and do it all over again the next day.All the best to my cancer sisters!

    Liked by 1 person

  25. i don’t know where to start. thank you Lindsey, i had some wonderful oncology nurses, they were my angels! but this is not about my cancer, i had a lumpectomy then a lymph node dissection, two mammograms a year for five years…all clear…yay! i have to be grateful for the heart attack I had in 2008, because of that i couldn’ t have chemotherapy. This is about the preventative medication. everyone, myself included, is grateful for the work the researchers have done, but there is always something, isn’t there? breast cancer feeds on estrogen, so they give us a medication which kills estrogen. That is wonderful, and I am very grateful. But i have osteoarthritis, have had it since i was 30. The preventative medication attacks the arthritic bones! so…i am left a disabled person. i have had to give up all my hobbies; cake decorating, water colour painting, knitting, sewing, swimming, walking. don’t get me wrong, i am not complaining, there are people worse off than me. iI can’t hold a tooth brush first thing in the morning, i have to get my hands working first, buttering the toast is difficult, filling the kettle, in fact anything i need to use my hands for, the hardest part is the bathroom, you all know what i mean, my shoulders won’t let my arm and hand stretch appropriately so i have a device called an east wiper. it is too big for my handbag so i don’t go out much…what would i do if i needed a bathroom in a shopping centre and didn’t have my personal equipment with me? Luckily(?) i will be 77 on Sunday so I don’t go out much these days for obvious reasons. I am an avid reader but i cannot hold a book, but i have my kindle and my ipads, ( I don’t use the computer much these days) my local library has ebooks so I can borrow books by my favourite author without leaving the house.
    Anyway, folks, that is my situation, i can cope, i am in constant pain but I have medication for that. i am glad my husband died in 2008, before all this happened because I know, after being married to him for 47 years, that he could not have coped with all of this. I miss him every day but am glad he is not here to experience this.
    This is not about having cancer, this is about medication side effects and the situation it leaves us in. i am SO VERY GRATEFUL for everyone who has helped me go through this for the past six years. Regardless of side effects and pain, I am cancer free!!! My boss used to tell me (I worked for a plastic surgeon for 20 years and we had lots of patients having reconstruction), he used to say…cancer is a word, not a sentence!

    Liked by 1 person

  26. Thank you for taking the time and thought to write such a heartfelt account of how it was for you. However I just wanted to say that I couldn’t read to the end as I couldn’t relate it to my own experience of cancer. I found the tests and scans reassuring as they happened so quickly and showed that the health system was taking me seriously and giving me the best treatment and chance possible. I found telling people cathartic, although I felt more for the situation that I was putting them in than for myself for having to talk about it.

    What I am trying to say is that you have made one more little mistake by assuming that your experience is typical whereas cancer is a very personal issue and so individual to the person affected. That doesn’t take away from your own feelings and I really do feel for you as it sounds like you found it a lot harder than I did.

    Thank you again for sharing and also for all your professional support and care you and your colleagues have given to people like me over the years. You don’t have a get it to show warmth and kindness, which is my experience of the wonderful staff that cared for me.

    Like

  27. Thank you! I became an Oncology RN because of my breast cancer D.C. 9 years ago. So, in a sense I am on the opposite end of your spectrum. I do everything I do because of your EXACT words/feelings. You literally took the feelings I have and wrote them down!
    Michelle Rommelfanger Oncology Nurse Navigator

    Liked by 1 person

  28. I was diagnosed with breast cancer on a Friday evening and had a mastectomy 10 days later, chemo and radiotherapy followed and yes it was tough, and yes everyone said I was brave – but I wasn’t. I was just stubborn. At 34 I was not going to let the C get me as it had my mother and grandmother. Some friends stood by me, others including my sister vanished from my life. Now, 20 years on, the scars remain but I am still going, That is life.

    Liked by 1 person

  29. Thanks for caring. I too am a survivor of 5 years. Sadly you are never briefed or prepared for the long term side effects which are the worst. Be tough, be positive and embrace life. Diet is also the most important aid in survival. I think cancer is nature’s way of saying ENOUGH – start listening to your body and treat it with love and real nourishment. Thank God some of us get the second chance to pay attention.

    Liked by 1 person

  30. Eighteen years ago I was diagnosed with ovarian and endometrial cancers. At the time, I only knew of two other women to have ovarian cancer. A psychotherapy client of mine who died several months after her diagnosis because she had been incorrectly diagnosed for over a year. Sadly, by the time they found it, it had metastasized all over her abdomen. And Gilda Radner. I didn’t know her personally but she and my client both died so I knew that the prognosis was bleak especially when a doctor friend of mine insisted that I should not read about outcomes.

    Prior to my own diagnosis, I had another client who had been diagnosed with breast cancer the year before. She initially didn’t come to me in order to talk about cancer. She had another more pressing issue. However, once that was successfully handled we talked about her cancer. As with my other patient, I said all the right things and of course, many things that were not helpful because I had no idea of what it was like to face a cancer diagnosis, much less ongoing treatment,

    My own treatment was a humbling experience. I’m not saying that if you haven’t had cancer that you shouldn’t be an oncology nurse or do therapy with cancer patients but no matter how caring and empathic you are, it feels very different when you are on the other side of the hospital bed, as you have so beautiful articulated.

    Between my chemo, radiation and several surgeries, my treatment lasted over a year. I never knew what would interfere with getting a treatment (red blood cell count, white blood cell count, etc.) I also didn’t know how long it would take each time for the chemo to totally flatten me. And then what effect the radiation treatments would have on me. In order to navigate treatment you must become very comfortable with uncertainty because there isn’t anything that is for sure when it comes to treatment. At least that was true in my case.

    Because I had such a “killer” protocol for my treatment, I ended up suffering severe side effects for 11 years post treatment. I ended up in the hospital for a week if not more several times a year being treated for bowel obstructions which were directly related to my intra-peritoneal chemo treatments and my radiation treatments. A friend finally convinced me to change my diet and not eat any gluten or dairy and I’m happy to say that I’ve not visited “Club Med” in the past seven years!

    That said, I’m still being treated for “side” effects of my treatment. The doctors did warn me of the negative possibilities post treatment but I was so anxious to survive I didn’t really care. It was also true that the doctors at least in their tone of voice, moderated the effect of each of the negative possibilities. While I’m thrilled to be alive and probably would have taken the same course of treatment again even knowing what happened to me, I still wish that they could have explained how painful, how scary, how tiring and how never-ending cancer treatment can be even if you end up with a good outcome as I have.

    As a result of my treatment, I had numerous partial and full bowel obstructions, not the single one that my radiation oncologist led me to believe was a possibility. Over the course of eight years, I also totally lost my hearing due to the neuropathy that is one of the effects of the platinum based chemos. Given that my job is to listen to people it was very scary to lose my hearing. Fortunately, I was a good candidate for cochlear implants and today nobody would know that I’m 100% deaf. Still, losing my hearing was a horrible loss that nobody talked to me about.

    I could go on. Cancer is the gift that keeps on giving. Or as Nietzsche famously said, “That which does not kill us makes us strong.” Suffice it to say, I am very strong! I was blessed with incredibly supportive clinicians, family, friends and colleagues. Even so, the people who were most helpful to me were those who were actual cancer survivors. They knew without me even having to say what my concerns were. And they listened to me incessantly. It was such a gift to have these strong women just sit with me and know that I could get through my treatment without losing my sense of self or equally importantly my sense of humor!

    Good luck on your healing path. I have experienced just about everything you wrote about. You gave a very true description of what it is like to have a cancer diagnosis and go through treatment. I think that everyone who has been recently diagnosed and their families and/or friends should be given access to your post. If the patient doesn’t want to read it, that’s fine but everyone around them should be well informed about what a cancer patient is likely going through. The experience of cancer is not something that healthy people fantasize about. Therefore most people have no clue about what it might be like. From one cancer survivor to another, thank you for taking the time to spell it out so clearly and so compassionately. I’m sure that you were a wonderful nurse before your diagnosis and if you decide to continue you’ll be even better because of your inside knowledge.

    May you receive many blessings on your healing path! Love and light to you!

    P.S. Nurses are the unsung heroes of the hospital. While I was thankful for my wonderful medical oncologist and gynecological oncology surgeon, it was the nurses who held my hand, laughed with me, encouraged me and provided more healing than I could have ever known. And I know that you and they offered that to each one of your patients no matter how well or badly your patients treat you. Nobody deserves to have cancer but it’s really a cruel irony when an oncology nurse gets diagnosed with cancer. Let yourself be taken care of. You deserve it and you’ll need it to survive. My thoughts are with you. If you need any extra support feel free to drop me an email.

    Liked by 2 people

  31. Thank you for engaging my heart and mind. I was diagnosed with breast cancer two days before Christmas, 6 years ago. I was in a fog through all of the holiday, new year and our trip we had planned to Hawaii. I was the saddest tourist on the beach for sure. I’M A CANCER SURVIVOR. It dramatically influenced my life. I truly had to trust others and take their guidance…fast, and that was hard for me. I’ve become more honest, vulnerable and willing to face my fears because of it. I am experiencing the full dimensions of life’s gifts. Everyone’s time on this big blue ball is ‘short’. There’s never enough time…and that’s how it should be. Love to the world…better yet, the universe.

    Liked by 2 people

  32. Thank you for all of this but especially for calling out the complexity of being in the world with cancer. And the fatigue. Just thank you. This is such a comfort to read. And nothing to apologise for. None of us got it till we had it. Thank you.

    Liked by 2 people

  33. Not a RN just a dad who lost his girl after 6 years of fighting the fight.dx ed at 34 passed at 40. I feel all that a nurse feels.you folks are truly my heroes.bless all that are involved in the care of a cancer or sick person.my life is changed forever.My whole family has changed forever.LOVE YOU LAURA,DAD MON KAMARA 9/12/2016

    Liked by 2 people

  34. One of the most poignant cancer blogs I’ve ever read. I’m so sorry that now you ‘get it’. But regardless of ‘getting it’ you’re job is SO important. I remember my favorite oncology nurse. Her name was Amy. She was such a lifeline for me. I requested her every time and felt like I couldn’t have done it without her. I don’t know you, but it sounds like you always had an amazing heart for your patients and for that I say thank you. I pray you have a nurse as amazing as you. Again, I’m sorry that you ‘get it’ now…. but this will only make you an even better oncology nurse. God bless you!

    Liked by 1 person

  35. This is beautiful, and holds so much truth for those of us going through it. However, I hope you will make one change to it. When you say, “Treatment doesn’t last forever”, unfortunately that is not true for those of us going through Stage 4 cancer. My treatment DOES last forever. Literally, I will never be able to stop treatment until my life is over. This is another thing that tends to shock people, even many people who work in health care and just do not seem to comprehend this. Yes, it can be a very terrifying fact, yet those of us with Stage 4 have to accept it and live with it. Please consider adding something about this to your wonderful essay. I hope and pray for all the best outcomes for you!

    Liked by 1 person

  36. First off, thanks for sharing, and good luck.
    I may be reading between the lines, but based on what you’ve written, I’m going to _guess_ you helped WAY more people than you know, one way or another. Well done for that, too.

    Liked by 2 people

  37. Reblogged this on God in all things and commented:
    I’m rebogging this because much of what she says rings true in my situation. Thanks for the honesty and thoughtfulness of this post. Lindsay, almost all of my health care team have been fabulous but there are a few that just didn’t get it. I am grateful most are compassionate even if they have not been there themselves.

    Liked by 1 person

  38. Dear Friend,

    I stumbled upon this letter “accidentally”. I can’t tell you how thankful I am for this. My family operates HOPE Rediscovered Cancer Coaching. Ironically, I have just today been diagnosed with oral cancer. The waiting for a diagnosis is horrible. Then, you to wait for coordination of everything, especially health insurance approvals, etc I just want get the ball rolling. Oral cancer is less popular, so I can find very little answers regarding treatment options. I’m in tons of pain. Wow! I could rattle on for hours! Thank you again for this letter.

    Liked by 1 person

  39. Dear Lindsay,
    Our son had cancer in the 90’s when he was 8. He is now 33 and doing well. Speaking to you as a parent who had many oncology nurses. I am forever grateful for each and every oncology nurse we had. They did get it and I know from your words truly you do get it.
    My son would not be here if it wasn’t for each and every one of our oncology nurses. And I want to personally thank you for your heart , your dedication and for your words here. Please know how valuable you are. You will be in my prayers.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s