Colorectal Cancer

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    Community Voices

    It has never crossed my mind to write a grief list. Here goes... 1) I have just lost 2 very dear friends in the span of 10 days. Gunter on 3/3/22 and Isabelle on 13/3/22. It has TRIGGERED my "long-standing-undiagnosed-depression/they call it DYSTHYMIA" for over 12 years now since my mom died on 28/3/10. 2) I am 49 and have gone back to university to pursue a Masters's degree in order to gain back employment in the following year. 3) Meanwhile in the last few weeks/March still, I recently was suspected of colorectal cancer w the CTScan but the Colonoscopy was clear! It threw me off the rails. 4) I seem to have lost focus, interest, hypersomnia, and am rather dysfunctional. I DONT KNOW WOT TO DO or UNDO. Please help. Compassionate-constructive help is welcomed. xx

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    Coping With a Colostomy for Colorectal Cancer -- It's Going to Be OK

    by Jo Phillips What does it mean to have a stoma? You might get a hundred different answers to that question. What it means to me is being part of something bigger and more important. Why you might ask? Because being diagnosed with rectal cancer at age 38 is a bit of a mind-bender. The first equation I had to figure out was: Mental health + cancer = ? As if that wasn’t hard enough to reconcile in my mind, the news that I would need a colostomy bag was unthinkable! At first, it was a coin flip as to whether it would be temporary or permanent. But after intense radiation had failed to shrink the tumor, I was told there was no chance of having reversal surgery if I wanted the best chances of survival. There are so many emotions in the run-up to ostomy surgery. The main one being Terror, with a capital T. My mum actually said she’d get a colostomy with me. Suffice it to say that has yet to happen! My fiancé Jay told me he’d be right there with me every step of the way and that we were gonna make it through this, together. However, the most memorable moment was when my sister-in-law Lesley told me that I’d “own it” and I would face it head-on as I did with every other challenge in my life. She said I was going to be more than OK. How did she know that? Through the tears, I nodded in agreement and murmured she was probably right (I was a really good liar it seemed). Inside I laughed and thought no way was that going to happen. It was me facing life-changing surgery, not her. I seriously considered not having the surgery. Sure, I’d take my chances with cancer — anything was better than getting a colostomy! Yet that was the stark reality. The fact was, part of my intestine was going to poke out of me (what?!) and I was going to poo into a bag from a hole in my belly (WHAT?!). This was not going to go well, no way, nuh-uh… So here I am nine months later. A pro at my own stoma care and loving the sense of community and camaraderie I get from being an ostomate. Yes, I bloomin’ love it! I also love little ButtFace (what I unaffectionately nicknamed my stoma). That name was meant as an insult, but now it’s a term of endearment and a seemingly infinite source of giggling-pleasure for me and my family. Lesley was spot-on once again (ain’t those kind of people annoying?) I do own it! Lately, I’ve found myself feeling more and more grateful for my new little extra appendage, for without it, I wouldn’t be writing this. And I think I may have reconciled that original equation. Yes, there’s an incurable cancer diagnosis, but with a new sense of purpose having a stoma (and a loud voice), I think I’m going to cope OK. If I have helped even one person on their ostomy journey, I’m satisfied. I’ve made something of my life and at last, there’s meaning.

    Community Voices

    My hand has been half numb for over a month now.

    So…I’m back again. I had a foraminotomy on C6 and C7 in 2019. I got relief of all my radiculopathy symptoms once I fully healed and I thought, “Well, that was an interesting experience!!” And started to move on. Then, I got busy taking care of everyone else. My husband was diagnosed with Stage 3 Colorectal cancer. My daughter was diagnosed with Depression l, Anxiety, and OCD. Then Covid hit and my son’s Autism, ADHD, depression and anxiety got worse. My daughter’s depression, anxiety, and OCD got worse. My husband was in and out of the hospital with chemotherapy, radiation, and several surgeries. He’s cancer free now, but still dealing with effects from the surgeries and treatment. I started working out more to handle the stress of taking care of everyone. Then, I pulled an all nighter for work at my new job, my dream gig I just got…and my left hand was numb, the left pinkie and ring finger, the same side I had my foraminotomy on. Crap. I give it a couple of weeks, stretch, do yoga, etc, but it does get better. Meanwhile, as I was working out, I noticed weakness and shaking in my knees and legs that kept getting worse and my lower back was sore, but who’s isn’t really? Finally after my daughter nags me, I scheduled an appointment with my neurosurgeon’s NP. She orders a MRI of my neck and my husband reminds me of my lower back and convinced her to just get one of that, too. Well, from the report, neither sounded good. My neck added a few bulging discs to go along with the “severe foraminal stenosis,” and my lower back had bulging discs and a herniated disc at L5-S1. To my surprise, my surgeon wasn’t really worried about my hand or neck, but wanted to operate right away on the herniated disc at L5-S1. It was cutting off half the space for my spinal cord. I’m one week post-op from a microdiscectomy there. My hand is still numb and it’s kind of important to me because I work in IT and type for a living. I’m just worried that since he said my cervical MRI was “looking better,” that my hand is just going to remain like this. I’m happy my legs aren’t shaking and even a week post op my lower back feels better than it did before surgery, so I don’t want to seem ungrateful and st least it’s just numb instead of hurting like last time.
    #CervicalRadiculopathy #DegenerativeDiscDisease #SpinalStenosis

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    Community Voices
    Community Voices

    I will do what I have to but I can’t help but worry…

    <p>I will do what I have to but I can’t help but worry…</p>
    Community Voices


    Patricia Gott

    Adjusting to Colorectal Cancer and Life With an Ostomy

    Nearly two years ago, when I was on vacation on a slow, end of summer road trip through the Mississippi River valley, I received a call from my gastroenterologist that changed my life. As the doctor was on the line and not his assistant, I knew the minute I picked up the phone that something was amiss: “Ms. Gott, we have to tell you the news from your recent pathology report tested positive for cancer.” I had gone in for my once yearly colonoscopy, something I’ve had to do for the past several years due to the presence of multiple polyps in my colon. I hadn’t felt very good for months leading up to that call—gut wrenching pain and bloody pencil thin stool was the norm—and a veritable storm had hit my life both emotionally and physically. A pair of ancient balsam poplar trees—two of the three sisters, as my partner calls them—fell across my yard in two separate storms, one hitting my garage and the second glancing across my neighbor’s yard. And my father was dependent on me when he wasn’t being financially exploited by a so-called caregiver nearly four hours away. Just as it seemed as if the storm was subsiding, then the news that I had cancer smacked me across my face. When my symptoms worsened as I turned 50 some months before, I had prepared for colon cancer and the prospect of having to have some of my colon surgically removed. But when it turned out that a several centimeter-long tumor was lodged in my rectum and I would be going through chemo, radiation and surgery instead of teaching my beloved writing and literature classes, I went numb. I had no concept of what I was in for. My nattily dressed oncologist was a kind man who would later persuade me to keep living when I wasn’t sure I wanted to. The radiologist, a non-nonsense Army vet, was curt but did her job in a business-like manner. But the surgeon, brusque and cocksure as surgeons often are, grabbed the upper hand and pushed me to surgery before I had a chance to blink and rushed me through the process by which I would arrive at either getting an ileostomy (the infamous/dreaded bag) or a j pouch constructed (have my plumbing essentially rerouted with a pouch made from my compromised anus) with little time for questions. By the time surgery was over, I woke up high on anesthetic, minus four organs and had a bag attached to me that I’ll wear for life. After nearly a month spent in the hospital vomiting up green bile, my body went into permanent menopause and I lost a fourth of my body weight in four months due to abstaining from nearly all food. I couldn’t sleep for two whole months. My biggest challenge occurred after I returned home. I asked the surgeon who removed the tumor about draining excess fluid from what is known as the Barbie Butt (essentially a reconstructed post-rectum posterior). Without any signal before, the surgeon cut into me without any discussion of what the side effects would be or the emotional and physical toll it would take on me. All I got was a terse, “This will take some time to heal now that you’re on chemo.” When he was done inserting his scalpel in my former rectum, I had a nine cm wound that would take six months before it was even partially closed and I could down sit squarely. The most I could do was lie in bed; even bathing was a torturous process whereby I rarely immersed my entire body in the water. I took no pleasure in eating, reading, listening to music, walking outside or really anything at all. I resented everyone who was able-bodied—until I realized they didn’t cause my disease. It was no one’s fault, really. Just the result of 25 years of inflammatory bowel disease and the cancer that few in our fastidious culture talk about—rectal cancer. As I couldn’t cook, bandage my wound or care for myself, I admitted myself to a ramshackle nursing home in the next county, far from family, where I was the second to youngest person there. (The nursing staff loved interacting with me as I could carry on a conversation that included jokes and cracks about the atrocious food). Two months in the nursing home surrounded by Alzheimer’s patients who could barely lift their heads was challenging at best. Returning home was another situation entirely. Unlike in England, where ostomy nurses visit new patients daily, I received twice a week visits from staff who were not educated in what to look for as far as not accepting life with an ostomy. Many people with ostomies never leave their home and some consider ending their lives, as their life is so radically altered and they get no help with that adjustment. As I live in the rural Midwest, support groups for people in my situation are few and far between (thank goodness for my online pals who have the best tips on “how to rock the bag.” ) If it hadn’t been for a loyal and dutiful partner who made the seven hour round trip trek every weekend for the entire year I was laid up, and the excellent psychiatrist who encouraged me to see beyond the boundaries of my body during a five week long inpatient stay at a downstate inpatient treatment facility, I’m not sure I’d be here today. I’m largely in the clear, but find myself wondering what the cost of living really is. I am fortunate I can work again—hungry for human contact and hoping against hope that I will be able to keep my health insurance. I get up every day in my newfound body and life, praying it won’t erupt to reveal my body’s vulnerabilities. But if it does, I will survive.

    Community Voices

    Saturday's YouTube show

    Saturday is my preferred self care day, because of a YouTube show I subscribed to.

    The main actor and manager, aka "Gly" is a Mighty too. He survived a colorectal cancer.
    He started this exploration entertainment about 3 years ago, almost alone.

    This is about old mines exploration in USA, recorded live but edited before broadcasting.
    It is also destined to be educational, to anyone, kids included.

    We exchanged a few emails as I asked details about gold, silver, copper, lead mining techniques.

    There are 82 episodes so far.

    I recommend it if you are adventurous minded.

    It is called "Exploring mines and abandoned places".


    Community Voices


    I know it’s probably just anxiety and my BPD making me think in extremes, but what if it’s not? I’ve been bleeding from what is presumed to be a hemorrhoid for a while now, but it got a lot worse today. My grandma had colorectal cancer at 37 and she thought it was just a hemorrhoid but it turned out to be cancer. She survived the first round of cancer but not the second 20 years later. I’m honestly scared because the familial trend is to skip a generation and my generation is the next in line....
    I’m waiting for the GI nurse to call back. #Anxiety #BorderlinePersonalityDisorder #Cancer

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    Community Voices

    Preconceived ideas of Black pain sufferers

    In 2018 I cane to MSK hoping to be specifically treated by them for colorectal Cancer which I had been diagnosed with four years earlier. I met my Oncologist, my surgeon, and my PAIN doctor, Grant Hong Chen. From the onset of our doctor/patient relationship, I noticed that whenever I had an appointment with Chen, he would always give me the strangest looks, and his speech would be oddly modified from how I heard him speak to his other patients. He would also give me a Urine test EVERY time I had an appointment with him, which I had no problem with at the time, because I wasn’t aware that he was a racist, who was doing all this because of suspicions he had that I gave him NO reason to! At any rate, he would side eye me, and look as suspiciously at me as his thoughts allowed him, and ONE day as I was waiting in his exam room for him, he shows up and no sooner than when he entered the room he says; “Look, I dunno what’s going on, but whatever you’re doing, you need to STOP, because it’s showing you have DILAUDID in your system!”. I was SHOCKED!!! I didn’t even know how to SPELL Dilaudid, much less knowing where to FIND it, but that information didn’t seem to concern Chen. I was THEN starting to get ANGRY, and now everything began to make SENSE! The side eyes, the TESTING every visit, and now the flat out ACCUSATION, which was one of the most DISRESPECTFUL and HUMILIATING things I have ever been subjected to! I was FURIOUS now, because not only was it untrue, but he wasn’t even TRYING to understand an alternate perspective as to how it could’ve happened, and was more hell bent on what, I STILL don’t know to this day!!! I scheduled a meeting with HIM, me, and patient relations which was a very uneventful gathering, because CHEN DIDN’T SHOW UP, instead was his SUPERVISOR, who claimed that the result of my being accused came from the fact that I have been taking slow acting Morphine Sulfate which the supervisor claimed could show up on a drug scan AS Dilaudid! That would mean that the doctor was WRONG, right? So why wasn’t he there to APOLOGIZE to me for such an outrageous and disrespectful accusation which caused a big unnecessary SCENE in his office! Plus, if he went to SCHOOL for as long as a doctor SHOULD, wouldn’t that be something HE would know as well? No answer from the supervisor! So I went home feeling like NOTHING was done about this little man, and his notion that somehow I MUST be a criminal because I’m BLACK! I got home, and decided to write Chen a nice long email, telling him what a racist POS he was, and how if I EVER hear of him EVER disrespecting another BLACK patient like he did to me, I’d get on the phone and tell any and everyone who’d listen how disrespectful he was to me, and how he shouldn’t be practicing at MSK if he was going to treat black Cancer patients like that! It’s bad enough that we have to deal with so many of the debilitating aspects of Cancer itself, but to have to be LAMBASTED and ACCUSED by the very people who’re supposed to be HELPING to handle such a devastating disease! After I sent that email, I was called by MSK hospital, and told that I cannot THREATEN the staff, which the ONLY thing I threatened that man with was letting his superiors know what a RACIST and SUSPICIOUS CHARACTER he was! They told me that I couldn’t come BACK to MSK unless I spoke with the director of the hospital, the head of security (who read the email and said he saw no evidence of a threat), AND a hospital psychologist! I REFUSED at first, because I didn’t understand why they were LYING, when ALL they had to do was get him to APOLOGIZE to me, but they decided to do this in the MIDDLE OF MY CHEMO TREATMENTS, and I NEEDED those, so I decided I’d do what they were basically FORCING me to do, and I decided that after that. I’d leave MSK and go ELSEWHERE for my care, because there weren’t many black patients there, and I just felt UNSAFE, and I felt like MSK was actually a HOSTILE ENVIRONMENT for me, and so as SOON as my Chemo treatments weee done THEY actually came to ME to find out when I was leaving, and they HASTILY pushed me out of the services and care of Memorial Sloan Kettering Cancer Center!!! I truly wish there were some LEGAL way that I could redeem myself, because I feel SO VIOLATED, and SO MISTREATED that It’s caused me to have PTSD from the raw ANGER and RAGE this caused me to experience on an almost DAILY BASIS!!! I cannot and would not wish that kind of treatment on my worst enemy, and it was MSK who went out of their WAY to make me feel less deserving and less worthy of the care that SO MANY OTHERS receive without any racist preconceived ideas and notions! I dissuade ALL Black people I have ever met dealing with Cancer from getting care at MSK, because for all of its accolades and praises from other Cancer patients of other races and ethnicities, (I’m African American) the experiences for BLACK patients is HORRIFIC to say the LEAST!!! Thank you for your time, and thank you for allowing me this forum to relate my story to you!!! I hope NO ONE has to experience what I did, no matter WHAT race they are, but I don’t think this would’ve happened to any other person from any other racial group than mine! The amount of ridiculousness black people have to face in the New York Medical community is OVERWHELMINGLY ABUNDANT!!!

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