Lindsay Norris

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,
Lindsay, Oncology RN

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Published by Lindsay Norris

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

576 comments

  1. Thank you! Oh, my goodness! Thank you! Thank you for understanding the crippling fear and anxiety that come with hearing the words, “You have cancer.” . My husband and I got married in March of this year and in May I heard those dreaded words. The guilt I still deal with is as painful and gut wrenching as the diagnosis itself. Two months into a new marriage and my husband was already dealing with the “for worse” part of our vows. Thank you for sharing your heart and making me feel as though I’m not alone with the uncertainties of this battle. You “get it”!! The waiting, the second-guessing, the over analyzing of every single word spoken by the nurses and doctors, knowing that life will never be the same…you get it!! You have blessed my heart tremendously and your patients are very fortunate to have you in their lives. I am praying huge prayers of healing and peace for you.

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  2. thank you! as a recently diagnosed type 1 diabetic (diagnosed as an adult)—i cannot tell you how frustrating it is to have this heaved upon my life, and having to deal with public health employees who are mostly well-meaning, but really have NO CLUE how to talk with people with serious issues and illness. It’s humiliating and there ain’t nuthin to do about it because the alternative is…..die…..
    Would love to find a doc or endo who IS type 1 diabetic….then i know they would “get it”—-thanks for sharing your story….i’m also a fan of Here comes the Sun, and paying attention to omens 🙂

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  4. I just read your story on Yahoo and popped over here to say how beautifully you expressed yourself. Sending you much love and prayers from Florida sweet girl and keep fighting!

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  5. Am sure you were a good, compassionate oncology nurse. No one can be expected to know what a diagnosis of cancer is, except the patient. From a double cancer patient…… God bless, and, ” here comes the Sun “.

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  6. Dear Lindsey,
    I have been diagnosed with Anal Cancer in the last 30 days
    I began my treatment of Chemo & Radiation yesterday Dec 1.
    This is not new for me as I was diagnosed with breast cancer in
    1997 that was treated with radiation. In 2008 the breast cancer
    Returned and after a bilateral radical mastectomy & 6 Chem treatments
    I was cancer free for 8 years! I guess why I’m sending this is cause I feel
    That no matter what is said to you during the process of your life is how you
    Yourself understand what is taking place in your body! I have taken each as
    OK what do we do to take care of this! I don’t shed tears for myself! I have
    A fantastic support group of family & friends! I think you are a very special
    Person and you probably did understand more than you have given yourself
    Credit for! I pray that you continue to have blessings in your life! God is with
    You every step of the way🙏❤️
    Deb from Texas

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  9. Everything you mentioned, Lindsey is so real for cancer patients. I’m an Occupational Therapist who sees many patients with orthopedic and neurologic disorders along with many other diagnoses and couldn’t possibly know what they’re going through. Maybe it’s a good thing that you or the many nurses that work in Oncology don’t or didn’t fully know or you may not have chosen that path, and we NEED you!

    I was diagnosed with Non-Hodgkin’s Lymphoma this summer and it took 4 months to get to treatment because of three surgeries, second opinions, and waiting, waiting waiting. I’m 54 years old, and although I don’t have kids, my husband and I live with my mother who has Lewey Body Dementia and I’m fully committed to taking care of her as she cared for me and my siblings growing up. I worried about what would happen to her if something happened to me. I’ve written about my diagnosis and the affect it’s had on my mother in my Blog – Mergansers Crossing, and it’s helped me deal with it all.

    I’m finished with treatment and had a PET Scan on Tuesday. I meet with my MD today for the results.

    You are in my thoughts and I wish only the best for you and your family. Thank you for sharing.

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  10. Dear Lindsay,
    I was laying in my hospital bed at Walter Reed, halfway through my third round of chemo, Inpatient with an IV for five days at a time, every three weeks, when it finally really hit me… “I have cancer… I have fucking cancer…”
    I knew in my thinking brain what was going on, ever since my diagnosis. But it wasn’t until that moment that it finally got through to my feeling brain, and it was a bombshell!

    Please don’t apologize for not getting it. Almost no one who hasn’t been though it does. And in my case, even going through it wasn’t enough for me to get it until that blinding epiphany halfway through round three of my chemo.

    Now that you joined the ranks of “I get it” you’re in my prayers to join the ranks of “I survived it” as quickly and with a little after effects as possible.

    I’m now a five year survivor, and the lasting damage I have is more from the chemo than the cancer. But I’m still here, still vibrant, and still loving life, so it was a very good trade.

    -Greg

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  12. Lindsey, Our organization gets to work with women and men every day that are going through what you are now. http://www.KansasCityHealingProject.org We have been assisting patients going through their treatments since 2005 and have assisted in reducing the pain, anxiety and fatigue they experience. Services are free to patients and caregiver as we have some wonderful supporters. If you are interested, our contact info is on web site. Good luck!

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  13. LIndsey, There is an organization in Kansas City called Kansas City Healing Project. We have been working with cancer patients since 2005 going through treatments for cancer using energy healing services. Our clients have shown a significant reduction in pain, anxiety and fatigue as they go through treatments. I am sure some of your patients have work with us over the years. Our services are free to the clients and caregivers because of an amazing set of supporters. If you are interested, you can check out our web site http://www.KansasCityHealingProject.org with additional information and videos of what we do and from some of our clients. You can also contact us for more info.
    Good Luck!

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  15. I don’t know you, but my heart goes out to you. It’s easy to be brave if you’re not afraid. Bravery is when you’re afraid, but you do what needs doing anyway. I can tell you’re brave. Wish you very well.

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  16. First, i understand what you and your family are going through. My father passed away from cancer. Its such a difficult thing for any family to go through.

    More importantly, i hope this becomes a blessing in disguise. Our medical industry is terrible shape. There are a lot of things to fix. Not just the cost of treatment but the way patients are handled. Nurses and Doctors treat people like patients rather than human beings. To you it may be just a job and you are just going to work. But to us, its the most important thing going on in our lives. The person lying in that hospital bed isn’t just someone with cancer or an infection. That is someone’s mother, father, brother, sister…loved one. As you’ve realized, when a loved one goes through something like this. its all consuming. It takes over every part of your life. There’s not one second of the day when you’re not thinking about it or feeling helpless.

    Im glad you have realized this, but i’m sorry it had to come to this to do so. I hope more medical professionals realize what you have said. I hope nurses and doctors start treating their patients like their own family members instead of just another person to push through the system.

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  17. Lindsey Norris. We love you for this. Me and my wife live near by in Shawnee. What you are now experiencing has clearly changed your life as you know. . I mean that in a way that when you are all done with this part of your life, It will allow you to change your way of thinking all together. My wife was diagnosed with cancer in September 2016. It all ready has changed your life of helping out God with people with cancer. I wish I could have been one of your patients just so me, my wife and you could spend a few minutes to cry together and to support you. I had a Oncologist at a l local hospital told us it will be ok and you will be fine. We were left powerless and felt life itself was over for us. All the thoughts of living without my wife and taking care of my 10 year old without he mother. Pleas let me be clear that the doctor we saw is very compassionate, kind and great at her job. we just were not a fit for her. Our heart goes out to you. We are now empowered with what is going on and with the doctor we have. Your story makes me want to reach through, go to Olathe and hunt you down just so I can tell you how much me and my wife love you and your family. You and your family will be strong. It is amazing how much your patients will support you. My wife works for a local hospital and sees cancer patients all day. some have become friends with my wife because of this. Also you have a unique gift of knowing what it is like living both sides of the tracks at the same time. Again your patients are very luck to have you.

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  18. 4 years ago on our 7th wedding anniversary I was told I had colorectal cancer, the same thing my dad had died from 28 years earlier. It was later diagnosed as stage 3B like yours. Yeah the xeloda/radiation, surgeries , living with an iliostomy , infusion chemo followed by reversal surgery all sucked but watching family and friends worry themselves sick was even worse. The process will leave your body changed forever, but you adapt to that. But when handled correctly cancer also leaves your mind and soul in a better place. From your blog I believe you are well on your way to that end. I wish you well in your journey. During my process I had 7 different religions praying for me, two non Christian, not bad for an agnostic ! What that taught me was take all the help you can and I hope you do as well. As you have realized you will have good days as well as some really tough ones, just hang on and keep plodding along and remember those trying to get through it with you.

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  19. I’ve been an oncology nurse for 4 years, my journey is the exact opposite. I was diagnosed with testicular cancer in 2002 and the treatment and care from all those involved lead me to where I an today. I have an instant connection with my patients. I wouldn’t change it for the world! Great message!

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  23. Thank you for posting this! This is, BY FAR, the most accurate description of what it is like to be diagnosed with cancer. I, too, was diagnosed with stage 3 colon cancer in 2013, and then with liver metastasis in 2015. Wishing you the best on your healing journey.

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  24. My beautiful 28 year old daughter has been fighting a rare [for her age, non smoker] oral cancr for the last 16 months. It’s been an awful time with surgeries and huge doses of radiation. We were blessed to be senthe 75 miles away to Upenn where we have had incredible doctors, nurses and start of the art treatment. My daughter is an OT and she to says she will have a very different perspective when she returns to work.

    I will be following and praying as you continue on your journey. It truly is a journey for you and those that love you.
    Rose K.

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  25. Thank you so much for sharing your story and you touched on everything exactly the way it was and is for me. You are a beautiful soul and I know even if you didn’t get it your compassion shone through. You will get through this and will even be able to be more compassionate than ever. Cancer for me was a gift. I still get scared but it has made me a better person in every area of my life. I will pray for you Lisa because with God nothing is impossible!
    Thank you
    Kathy

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  26. I’m a hospice nurse, and like you, I didn’t get it. I thought I did. Now, watching my husband fight stage 4 colon cancer, I understand what the families go through. But even though I’ve been with him through his tests, diagnosis, and chemo I still don’t get it, not completely. Because this is his cancer, and not mine. And even though I’m a nurse there is just so much that I still don’t know. I only hope that I can be whatever he needs when he needs it. Thank you so much for the insightful article.

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  28. How I wish someone could write what it is like for the husband/wife/partner of the one with cancer… who can do nothing but wait… in silence, because we know what the outcome will be… but dare not speak the words. Like this writer… I was a clinician (chaplain) who worked with patients and families and staff, and despite my training, despite my education, despite my experience… I didn’t get it. But now, I do. Only, I’m doing it alone. I miss my most important, my most beloved patient so terribly. Now… I get what the husband/wife/partner feels.

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  30. I am sorry that you are now “one of us”. But the experiences you are having will impact those you care for in ways that you can never know. This blog really resonated with me and what I have been through. Thank you for sharing and God Bless.

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  32. From a stage 3 bowel cancer survivor (13 years now) thank you. I felt every emotion resurface reading this. Nobody has ever put those feelings into words as eloquently as you.
    Wishing you so much as you go through treatment.

    (PS. My radiotherapy tune was “There may be trouble ahead.” The radiographers could never understand why I laughed through the radiotherapy sessions…)

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  34. I too am a nurse of 35 years and spent years taking care of terminally ill patients in the hospital and then at home. I am five years out and Cancer Free after a Breast Cancer Diagnosis (2A). You described every stage of the Cancer experience beautifully (vulerable and raw). I haven’t cried about Cancer in a a great while-but after reading your post today I did. And they were good heart felt tears. Good Luck to you on the rest of your journey and thanks for sharing your story.
    Catherine Jonakin RN

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  35. I’m not a nurse and thank the Lord I don’t have cancer but your story still spoke to me and you are wonderful. All of Life’s blessing, thank you for sharing it I know it will make many more empathetic toward others facing challenges.

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  36. I was a pharmacist and had worked the oncology floor. I also worked with HIV/AIDS patients. I too didn’t get it until I was diagnosed with stage IV colorectal with mets to my liver. It’s now in my lungs. I get it now. Personally I think cancer made me a better person. I’m able to help newly diagnosed patients so much better. I am grateful for my doctors and my nurses. I’m no longer scared of dying. I have peace in my life. Cancer is my job now and I do the best I can every day. I try very hard to be positive and take each day as it comes. That’s all any of us can do. Don’t feel bad nurse Lindsay. I’m sure you were a caring and compassionate nurse. But unless you get diagnosed with cancer, you truly can’t understand what we go through. Take care of yourself and fight! I’m wishing you a complete recovery.

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  37. And remember that the journey is different for every cancer patient, but you have now first hand experience about this huge horrible thing called cancer. God bless you.

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  38. I lost my wife in July, after 34 years of marriage, and six-and-a-half years of fighting Stage 4 ColoRectal Cancer. They gave her a year, she took six. I was with her every step of the way. I shared it with her, I supported her. We grew closer. We fell back in love, but when she died, and every day since, I’ve thought, I’m sorry I didn’t get it.

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  39. It’s OK. I believe each cancer patient learns very quickly that their cancer journey is going to be unique. Although as you know, the medical process is normally similar but the results can be quite different. I think what I appreciated most was people who were “honest”. I first got bone cancer when I was 12, but I was too young to understand it. I was very lucky in 1966. The cancer was localized and could be surgically removed. It saved my life and my leg.

    Last year it was bone marrow cancer, MDS. Very few people get it. I became a “google nut”, but not much on the internet about it. What there is, is either dated or sketchy. I’m almost 1 year past a stem cell transplant and doing very well. I had excellent care and honest caregivers. I wanted to know my chances. The answer; “We can’t tell you that, because we really don’t know” Can I be cured? answer, “We will never say you’re cured, We hope to say, you are in remission”. If I make it to remission, what are my chances of long term survival? Answer; “We really don’t know”, every patient is different and reacts differently to treatment. Some do very well and some poorly and we have everything in-between. However, those with the best attitudes, seem to do better.

    So my feeling is to focus on being positive and approach this as another major challenge in your life, which you plan to overcome. They are not the answers you are looking for. They are tough, but they are “honest” and truly prepare you for what you are about to experience. Prepare for it. Embrace it. Do the things they ask you to do, to the letter. They may not be able to truly understand what you are experiencing, but they do know better than us what things help. You have an advantage there as an Oncology Nurse.

    You shouldn’t feel badly at all. The only way to truly understand and deal with something properly, is to be faced with it. Accept your condition, whatever results occur, and seek help and support for your physical, as well as emotional well being. Approach it as another challenge in life that will include many setbacks and remember; it’s not forever and medical science, together with Father Time, resolves everything. Enjoy and appreciate every minute you are alive, whether it’s millions more, or only a few. No one truly knows what you are going through but you. We should not judge others. They simply can’t know what “you” are experiencing, even if they’ve had cancer before. Oh look! Here comes the Sun!

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  40. 😘😘😘 Thank you so much…a two-time survivor at this point scared to death of another recurrence while trying to remain grateful and live in the moment. Thank you for the understanding that there are permanent scars, inside and out. Yes, a world of difference when the diagnosis is yours…my teeth chattered so uncontrollably that I could not even speak with the doctor. Be prepared for anything but cling to hope for everything. Praying peace and healing and strength for you and your family.❤️

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  41. You are so right – the worst part of my cancer is the over stretched breast cancer nurses who I feel don’t give a damn….they are so over worked – they have no time to connect – thanks for admitting what I knew all along – health professionals (on the whole) just don’t get it -I found myself banging my head actually on an actual wall last June …when someone tried to talk to me about delaying my op……in a corridor……. but this admission by you has gone some way to helping me forgive – but not completely —- I have so had enough of this cancer…that has taken so many of my family and now threatens me…good luck with it all – my advice for what its worth – focus on the next five min ….and the pain goes away one way or another …eventually…

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  42. Lindsay, thanks so much for sharing your story. That was not only brave of you but also helpful to so many. Your perspective as a healthcare professional is so meaningful and spot on for patients to know that they are not alone. I am a Patient Advocate and have had so many patients tell me their experiences with their doctors/nurses stating, “they just don’t get it!” At least you were able to verbalize your feelings in a meaningful way. Thank you! All the best to you.

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  44. Lindsay, I can’t asses how you are progressing? maybe I missed it, I offer a possibility of help, for nothing!
    I had twenty years of polyps in my colon family history of cancer, and myself, and was a researcher and decided it could be beaten.
    I developed a technology that simply took me to a point of no polyps after five years! and a cea of -neg 1, almost unheard of!
    I since have discovered I appear to have developed what is being trailed and stated as the very latest multi cancer treatment europe us uk germany china. Molecular Biophysics immunotherapy
    TGA have even showed how experimental technologies as this can be used to treat cat 1 terminal patients.
    you can reach me at majindi321 at yahoo dot com, and if your already well again I just wish you and your family a beautiful Christmas. Mark

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  46. Dear Lindsay, After 45 years as a nurse caring for cancer patients and their families I didn’t get it either…I feel your pain and fear…it is my pain and fear that I experienced as a kidney cancer patient…as nurses/patients we do not speak enough about these things. I congratulate you for sharing your thoughts. I could only find one research study on nurses becoming patients “Nurses as Patients: The Voyage of Discovery” by Kathryn Zeitz, International Journal of Nursing Practice 1999, 5: 64-71. The essence of the article is patients are patients and it is the care we give that makes the difference.

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  47. Thank you Lindsay for your thoughtful and honest description of the things that go through our minds as cancer patients. I have hodgkins lymphoma, and have been enduring treatments, scans, biopsies, tests, you name it since March 2016. I’m gearing up for ICE after failed ABVD, and then failed immunotherapy clinical trial. These words you wrote came at a time when I’m down, not out, and needed a voice to help myself and others understand this hell. Thank you so much, and you are definitely brave.

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  50. Lindsey, thank you so much for finding the words that I could not. I am not a nurse. I am 2 years since diagnosis. You did an excellent job of expressing how I felt/feel. GOD bless you. Sincerely, Janet

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    • Lindsey, thank you so much for finding the words that I could not. I am not a nurse. I am 2 years since diagnosis. You did an excellent job of expressing how I felt/feel. GOD bless you. Sincerely, Janet

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