Colorectal cancer: my story so far
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- Опубликовано: 28 апр 2022
- I’ve had #BowelCancer, or #ColoarectalCancer, twice.
It’s a disease that can kill but, if caught early enough, is survivable.
I’m very lucky to have survived two separate cancers and a host of potentially deadly co-morbidities.
This is my story…..so far
Don’t die of embarrassment!
#BowelCancerAwarenessMonth2022
This is the most British description of cancer and near death symptoms I’ve ever heard. Honestly, very informative, dignified and classy.
I don't know how I found this video, but I am so happy I did! As a Nurse, I just cannot tell you how much I admire you! You have been through a battle, both physically and mentally, that most people will never know. And yet, your mindset is not directed towards self pity, but rather towards education of strangers on the internet, and you very likely have saved the lives of people you will never know, all because you shared your journey on RUclips! You, Sir, are a phenomenal, brave, humorous, intelligent individual! Thank you for using your story for the benefit of others. It is my most sincere hope that you will have a long lifetime with your family and friends! Your children are blessed to have such a wonderful example of how to live with grace and positivity!!
Thanks Tami that’s really kind - and not sure it’s deserved
Thanks for doing what you do to help the rest of us keep going.
@@NeilWalsh_UN No, no *NO MY FRIEND!* You're quite wrong. Tami is right. Many accolades to you! Her compliment to you is *SO* very deserved! As are all the others in this feed! And like her, I too am SO GLAD that I stumbled upon your video! You are one remarkable person. Thank you for sharing your story of bravery with the world. (by the way, you owe me a drink as I DID watch to the very end) Haha..
As for that part where you recorded the "if you're watching this, unfortunately I'm no longer here" videos, I can totally relate. I did this exact same thing in the summer of 2019. It was to be played at my memorial service in the event that I wouldn't survive, as so many of my doctors had suggested. On February 10th of that year I suffered a massive DVT in my right leg followed by double Pulmonary Embolisms... one in each lung. Three weeks later it was discovered that I had a genetic blood disorder called *Factor V(five) Leiden Mutation* Even though I had been born with this genetic defect, it was dormant all my life... dormant up until a routine gallbladder surgery two days before the DVT, which triggered a cascade of horrible medical events. Weeks later, I was placed on a in-home Hospice Care program and by the end of that summer I had experienced three more PE's. Doctors still don't know how I've survived so many. Even while being on high doses of both Xarelto AND daily Lovenox injections in the belly every 8 hours, I continue to have random clots and PE's. As of this year,, I've now had 7 PE's and you're right! They are painful. AND scary! But I'm still here to complain, somehow...
Three years later, I'm no longer under Hospice Care. However I'm still seen monthly by pain management to help manage my very painful conditions & symptoms. The DVT resulted in a massive 27-inch long chain of blood clots that extended from my right calve, up into my abdominal area. I've had 9 Thrombectomy procedures, 2 stents placed in my thigh and an IVC Filter placed in my chest and am currently dealing with *PTS* (Post Thrombotic Syndrome). It has caused several open wounds and skin ulcerations on my right leg and the clots have completely destroyed my vascular system in that limb.
Just five months before that DVT I had both an endoscopy and a colonoscopy done back in September, 2018. I had been having signs and symptoms very similar to yours. Even though no tumors or cancer were found that day, they did remove 26 polyps from my colon and 4 from the interior of my stomach lining. 8 were found to be precancerous and I was instructed on that day that I would need to begin having colonoscopy studies annually - at minimum. Well, with all the other medical stuff I've dealt with since then (PE's, all the clots and NOW "sick sinus syndrome" where my heart has several A-Fib, Atrial Flutter and V-tach episodes a day)... well? The annual colonoscopies took a back seat to everything else, needless to say.
But about a year ago I noticed I was having occasional belly cramps again, weird pains and random bouts of constipation followed by excessive diarrhea. Then several more days of constipation. I also noticed my clothes weren't as snug and I was going down in shirt sizes. So I saw my GP and he started me on a bowel stimulant, prescription strength Movantik, to help move my bowels. He wrote it off "normal" since I'm on high doses of morphine for pain control. It's 10 months now since I first noticed a change in my restroom habits and the weight loss. To date, I've gone from a size 4× down to a 2× and I've lost over 80 pounds.. mostly due to the fact I barely eat most days. My constipation has gotten to the point that no movement for 10 to 12 days is my new norm ~ followed by 2 to 4 days of painful and uncontrollable diarrhea, then right back to another dry spell of at least a week to 10 or 12 days. 15 days is the longest I've gone and it was pure misery. At this moment, writing this, I am ONCE AGAIN at day number 9 and counting.. and feeling pretty miserable. And no matter how much rest I get, it's never enough. I'm so blasted weak & tired most days, I could cry. None of this is normal for me. Even at my worst while under Hospice Care, I don't remember ever feeling this poorly and overall "unwell".
The past several weeks I've been nauseous more than I haven't. My tummy always feels distended and I eat very little. But when I do eat it's usually a softer diet; plain toast, applesauce, yogurt, bananas or applesauce. That's pretty much my go-to.
I FINALLY saw a new GP back in July and she immediately wrote a referral for me to be seen by a Gastroenterologist... and I actually will see him for an initial consult this week. Just 3 more days! My biggest fear is that I'll be told there's *Colon Cancer* in there. I'm already dealing with news of a bone tumor above my left knee that they recently discovered kinda accidentally. It's in my left femur bone, my "good" leg. (which turns out now, isn't so good either) lol And I was just told a couple weeks ago THAT tumor came back benign but it will still need to come out as it has characteristics that COULD turn malignant eventually. Ugh!
I'm starting to feel like, "Why me?! Where does all of this end?" I can't even wrap my brain around one more bad diagnosis... especially cancer. 😩 But then I watched your video and what you've gone through, and what you'll likely continue to deal with. Not to mention your upbeat and positive attitude with a little dry humor mixed in. You telling your story has helped far more than you could ever know, I'm sure. Including me! So please take the compliments Neil. Seriously. Because you deserve every damn one of them! Isn't it just amazing what some of us have to go through just to remain here on earth? It truly is crazy! But wow, what a rollercoaster ride you've been on...
Thank you again for sharing YOUR story... I will keep you and your whole family in my thoughts and prayers. I just turned 55 a few weeks ago.. my wife and I were never able to bear children, unfortunately. But we have several nieces and nephews that look up to us and still depend on. So, like you, I guess I'll continue to fight back for as long as I can, just to stick around. Even though "our kids" are all grown up now, I know I'm still needed from time to time. For gas money, if nothing else! 💰 lol 😆
Sincerely,
Troy Daniel
Casa Grande, Arizona
Southwestern U.S.A.
P.S... If *YOU* made it through to the end of *MY* commentary, then it is *me* that owes *you* a drink. LOL 😆 Stay well my friend! And thanks again.
😢
God loves you I admire how brave you are ❤
😢
I repent for ever feeling sorry for myself. I love his dry humor and positive attitude.
Ha! You’re allowed to feel sorry for yourself (“the joy of work” as it could be defined….)
All I can say is God bless you…….
You are a wonderful communicator, and very inspiring in speaking frankly about your suffering, and the graphic details of your disease. Wish you health and strength, Neil.
Thanks so much!
Lost my husband to bowel cancer 5 years ago at 57 years old. Symptoms came on suddenly and he fought a really good fight.
I’m sorry to read this Lynn 😞
My husband was just diagnosed with colon cancer 2 days ago.We don't know the stage yet. This is the first video I found. It was very helpful in understanding that it's not an end all. We are about to embark on a journey together . We will fight, too. Thank you for sharing your story. Your courage and determination are contagious.
Did your husband have symtoms before it was diagnosed if so what symtoms he had
@@AhmedDiiriye-gm6um A little bleeding infrequently and a lot of diarrhea the last few months.
What a remarkable person you are. Your story is inspirational. I was diagnosed with cancer in my rectum and descending colon in August, and had surgery a couple of weeks ago. i have a temporary stoma and am waiting on histology results. My main preoccupation at the moment is how on earth will I be able to work again. Listening to you made it very clear how anything can be possible, although of course, that is dependent on the person, and you my dear man, you must have an incredibly courageous, kind and generous spirit. No wonder your wife didn't let a cancer diagnosis put her off marrying you, she must have known what a diamond she had found. Thank you for sharing.
That’s so kind - thank you Claire!
Wish you all the best with recovery and seemingly never-ending scans, bloods and things being stuck up your bum!
Best of luck
Neil
42 just diagnosed super scared, waiting for staging, same symptoms you had bleeding was ignored and exhausted, constipated and difficulty pooing, all where ignored as I thought it was hemorrhoids. I have 3 young kids and a wife who are fully dependent on me financially as I am a self employed, sculptor and woodworker.
I am currently at the beach giving our family a week to live normally before I come back to staging, surgery and or chemo/radiation. Your story scares me and makes me really not want to live through all this, so I’m living today awaiting the results which will be awaiting me when I get back from my trip from the beach, I’ve already lived through broken neck and addiction/alcoholism and now I’m able bodied and sober facing this reality with a tremendous dependence on God to heal my cancer and direct the drs, please pray for me as I will be praying for you.
My prayers go out to you and your family 🙏
Have you now been staged? If so, I hope it's in the early stages and thus better chance of survival
God bless you with 🙏
how's it going?
I had the same cancer in 2016 and after my Ileostomy was removed I went through 5 yrs
of hell with constant diarrhea. Ive had no social life at all as u know this all too well.
6 yrs now at age 54 and its finally calming down. Just had a colonoscopy and 5 slow
growing polyps were removed. Continued prayers to u on this journey my friend! WE GOT THIS!! ❤
I can’t describe what it feels like to read your post Kim. Both of my resections took 4-5 years to settle - and I had many moments of questioning why I didn’t retain the stoma(s)
Wishing you the best!
Neil
@@NeilWalsh_UN Thank u my friend and if I would have known the length of time, discomfort, weakness and pain I was going to endure for so long, I too would have kept my colostomy bag. Best wishes to u always!
Kim
How many years cancer survivor and what stage
@@prakashsudha1999 Are u asking me or Neil? Mine was stage 4 and Im at 7yrs now 😀
Incredible story 🙏🙏😊😊
You are AMAZING! You deserve some sort of award for everything you've been through.🏆Thanks for sharing your story. Best of luck to you, sir!
You are so brave. I’m here today watching your story because my 26 year old nephew has been diagnosed with stage 4 colon cancer, we are all very afraid. However, your strength and story has given me strength
Thanks for sharing, you are a brave man , so strong
At 51 I'm going to have my first colonoscopy next week after experiencing symptoms and some abnormal test results. Can't lie, I'm bricking it a bit but watching this has made it sound a bit more manageable. Thanks for the great info 👍
My husband was just diagnosed with colon cancer and it’s so very scary. Thank you for being so brave. I wish you and your family the very best. Thank you for sharing your story.
Wishing you guys the very best on your journey. I hot my four year cancer anniversary - for the second time - earlier this week 💪
My wife was just diagnosed with colon cancer last week and we're in the beginning stage of this journey.
Thank you for sharing your story. It may save someone’s life. Your medical journey is astounding. I’m a retired nurse & you describe medical terms and procedures very well--you’ve had so much personal experience with these things. Yet, the emotional toll in dealing with all of this must be so difficult. Glad you have a loving, supportive partner. My 40 y/o BIL had rectal bleeding and abdominal “lumps”(tumors) which he ignored until it was too late. Surgery was open/shut due to so much cancer. He died 2 months after surgery. We miss him still 37 years later. (His parents lived into their 90s.) To public who May read this comment: Don’t ignore rectal bleeding or change in BMs or changed BM frequency no matter your age. Get immediate help & don’t delay.
Thanks for writing Susan and I’m really sorry to read about your brother - terrible news.
There was some fascinating research done way back in 2008 showing that men had double the risk of bowel cancer than women and one of the hypotheses was that we present much later because we consciously ignore symptoms and are much less used to routine genitourinary investigations than women. It really spoke to me…..
Wishing you all the best
Neil
Thank you so much for sharing your absolute bloody rollercoaster of experiences since your 20s. I actually felt very emotional and upset watching it and find it incredible that one person can go through all this in such a short space of time. Your humility and honesty are lessons to us all. Thank you again for being so open about all this. I am also glad you made a most salient point about socialised medical care. More people need to speak out about those systems which don’t grant healthcare as a human right yet purport to be great. You are so much less dogmatic than I am though.
That’s really kind - thank you Emma
The healthcare absence that many have is stark. If I wasn’t well-paid I think I’d have died years ago
We all need to look-after each other. And that starts with universal healthcare
@@NeilWalsh_UN please answer me 😢😢😢
Ya healthcare is free in Cuba too! Taking away People's Autonomy is never right or injecting them with experimental drugs.Socialized Medicine sucks ask a Canadian Canadian
Absolutely remarkable that you stayed relatively positive and not in shock throughout everything, my mother was recently diagnosed with Stage IV Colorectal Cancer where they have found a tumor 20cm from the rectum causing near obstruction, CT and MRI images later they also have found it made it way to the liver, 3 of them to be exact on both sides of the liver, bilobar liver metastases, I was in complete shock but stayed strong and positive, and so did my mother! She completely accepted it and said she will fight it with all she got, she started Chemotherapy about 2 weeks ago on Xeloda and Eloxatin and she is doing much better! her tumor pain is significantly less and she told me going for number 2 is easier now, after telling the docs they told us this is most likely chemo response and will follow up after all chemo cycles are complete! Please pray for my mother, she's all I got ❤❤
God will be with her 🙏 in the name of the father the son and the holy spirit. Did the CT scans show tumor in colon ?
Wishing your mum (and you!) the very best with this horrid journey.
Prays your way
Said a prayer for her. Can relate to your last sentence as my mom is also all I have and she currently has stage 4 breast cancer. Going with her to the doctor later
🙏🙏🙏💓🙏🙏🙏
🙏 I thought I had problems, not even close! You, are an inspiration to never give up ❤️
You are doing amazing ❤
I'm so sorry you suffered so much. It's so amazing that you survived these horrific health issues.
Thank you. It is my turn now at 45 years old so thank you for being in the lead. Thanks to you I know what to expect, prepare, and avoid.
Thank you for posting your very informative video. You are very brave and kind to share your story.
Neil, thank you for sharing your story. It was and you are amazing. I’m 78 and had a fast growing meningioma removed a year and a half ago, followed up with 6 weeks of radiation. Bad headaches followed and surgery was done. When they opened my head up the whole area and the titanium mesh was covered with puss (bacteria). Had two more craniotomies tried putting in a cover from Medtronic the pacemaker people and where the previous incisions were cerebral brain fluid would leak out. Took that cover out and it was infected again. So surgeon left out so I have no brain flap. Doctor said he will not do anything else for me. My forehead looks like I was hit with a hard baseball. Left the brain flap out and said he had nothing else to offer me. My short story doesn’t even begin to compare what you have been through, so I have a lot of empathy for you. You are quite an amazing person. Again thank you for your honesty and bravery and sharing your story with us. John from N. C.
U. S. A
Thank you Neil ..for helping people along the way....what a journey u have had....spoken so clearly and easy to understand...
Thank you for being here sir....I wish you well
Thank you so much! You’re awesome for sharing in such a way I can understand without feeling a panic.
Thank you for this video and sharing what you went through. And especially the great advice at the end of the video.
Wow Amazing what you have been through. Hope you are feeling better now and continue to be able to live your life pain free as possible. Aweful what you have had to endure. Wishing you all good wishes for the future.
Gosh, you're amazing.
Thank you for sharing your story. I wish a a long healthy life ahead of you.
Thanks for making a video like this one.
You are amazing!!
Your are awesome ! Prayers for you .
Wow you are really really a fabulous man you've been through so much I admire you like you just would not believe it just seemed like it was one thing after another for you and you just kept going I cried I was so touched by your story on your bravery and everything that you've been through I could have been crying thank you for sharing this and helping other people maybe not to go through what you did or not as bad anyway thank God you're still here and thank you so much for this video God bless
Gosh your story hit me so hard!! Thanks for sharing so much!!
Thank for such a superb and open talk. Yes, I watched to the end and will watch it again.
Thank you and good luck!
I pray you stay well for the rest of your life 👍🏻
Your wife and you are heroes!Sending your heartfelt vibes!
From an Australian,im so impressed with you ,why do u still travel you are such a marvel i wish you well im bleeding for months but im 81 and im scared
Please go to doctor And Have a Colonoscopy ASAP!
Many thanks Neil you are absolutely wonderful,
An amazing story of perseverance- you are a miracle
How incredible. Thank you for sharing your story.
What a great experience sharing even though it’s cancer! Woohoo that you’re doing so much better with this journey. Thank you
You did a grand job telling your story, thank you!
Thank you for this 🫶
Thank you, praying for you.
Thanks for your time to make this video. I wish you luck!
Thanks for sharing your story. ❤
what a hand you were dealt and my god how you played it!!!
Thank you for sharing your incredible story - I’ve learnt so much and will pass on this video to friends and family. All the best 🙏
Thank you so much for this information.
Thankyou for sharing your experience, a warning to the rest of us!!
I salute you for having the willpower to overcome such a painful condition which is very painful even to imagine. I pray to God that you stay hale and healthy and be there for and with your family.
I also pray that every being on this earth remain hale and healthy, and care for each other.
Your strength is incredible mate! Keep fighting the good fight. Thank you for your video
Incredible story, sorry you've had to go through so much.
Really would liked to hear about your diet, before and after, it could reveal a lot.
Wow...just WOW! Glad you are here to tell us your story!
I will take you up on that offer of drink,!!!! you have such an incredible inspirational story. You have been through so much your positivity is mind blowing. You have touched on so many aspects and I have learned alot. I have had subtotal colectomy and knew i had some malabsorption but had never heard of short bowel syndrome so that was very helpful. As many said you are very engaging and delivered such a difficult story with such clarity and humor. Hope you are continuing to do well. Continued blessings to you and your family.
So unlucky to suffer with so much- but lucky with the care you received & to have a loving family around you.
Your amazing 🤩 great content!
Thank you for your generosity of spirit, for sharing your experience, journey and positivity, much appreciated. Whatever tomorrow holds I wish you and your family a fab today...................
PS I probably owe you a drink some day, somewhere too!!!
Thank you for your honest sharing…I said a prayer for you❤
You are incredible…. I could listen to you talk about anything…. Much love
What an incredible and inspirational human story. Awful to hear you went through so much but also a testament to today's medical advances. Without the experts you certainly would not have been here. So glad you can try and enjoy yourself and make the most of life. Totally true - everyone needs to think B.O.W.E.L. Blood always needs to be checked and ANYTHING that seems unusual and persists and certainly if it feels something is worse. Glad you got there. Reminder to everyone, you are never too young. In fact someone I know in early 40s has recently been diagnosed with bowl cancer. It is uncommon in younger people but not entirely rare!
Thank you for your amazing informative video. I wish you healing prayers always 🙏 ❤️
You are amazing!
Thank you for sharing your story…..good luck to you😊
I hope your ok today you have gone through so much your strong keep fighting
Thank you, for sharing your interesting story. All the best for you and your family. Stay strong! Greetings from Germany!
Thank you for such rich information
Wow Thank You for sharing your story. You are a walking miracle. I have been experiencing pain that doesn’t go away for almost 2 years don’t know what it is yet but next week I’m having the colonoscopy and an endoscopy so I’ll find out what’s going on.
Thank you for sharing your incredible journey, you have given me what I need to continue. I’m at the very beginning of my journey, I know something is wrong and with the support of lots of people I can battle this. All the best to you and your family.
Wow what an amazing and inspirational person you are. Thank you so much for doing this video it will help others I’m sure.
What a strong and wonderful man you are good luck
Thank you, keep fighting. ❤
🌻 Thank you so much for sharing your much valued message. Blessings to you and family that your health issues remain under control without future cancer concerns. 🙏
Thank you. Glad you are doing well.
Beautifully and thoroughly explained.
Many thanks for the video
Wishing you good health and happiness in life.
Thanks for sharing ❤️
compared to the hell you went through , i feel very lucky i caught my cancer early .had it cut out and will be doing chemo to make sure it don't come back. i know there will always be a chance it still comes back .so for the rest of my life i will have to be strictly watchful of what's going on with my body. thank you for showing me that no matter what.keep fighting.
Wow! You have really had a rough time. Thank you for sharing your story. I think I'll just go get that colonoscopy now!
You are the best that humankind can produce.
Thankyou thankyou thankyou. My husband has been down a similar journey tho not as rough as what you have been thru. I look foward to your updates, please do them.
inshallah your get better you're a Survivor Neal keep strong
What an epic saga! I was transfixed listening to it straight through without pause. Your attitude toward what life has thrown at you must be a factor in your surviving (and relatively thriving with family life and productive work) despite the setbacks and rarest of complications along the way. For personal reasons, it is particularly meaningful to me to hear survival stories. But yours is truly off the charts! I bet your wife is special, too, like you. Best wishes for continued years of staying steps ahead of the cancer demon. 💙
You are one tough guy. Both mentally and physically. I wish the best for you.
I ignored blood in my stool also. Now I have stage 4 rectal cancer and liver cancer. I hope you and I both get better.
Oh Michael I’m really sorry to read that.
Wishing you all the best with your journey 💪
How was your blood stool I’ve had mine for a month now but it’s bright red only when I wipe plz answer I’m scared
My prayers are with you Michael. Hope you get well soon. I have been having fresh red blood at the end of my stools since a little more than a month now. I visited my GP two weeks back and after visual rectal examination he said he can't see anything wrong there and that there's nothing to worry about. On my insistence he has however, given me the contact of the hospital where I can undergo colonoscopy. I am worried what should I do now.
@@sandythemonk a visual rectal exam which one, Did you do a CT scan ?
You are incredibly honest and positive. Thank you for sharing your story. I think this video will really help people.
It's moving to see the pain behind a smiling face. I pray for you for healthy and long life. the UN is fortunate to have a mission leader like you.
Wow! What a story and experience. So glad you're doing okay. Thanks for telling us about your amazing journey.
Why an amazing man enduring this experience. Great communicator. ❤❤
Thank you for sharing.
I'm just at the beginning of my journey of rectal cancer and your video has helped me so much. Thank You for sharing your video 🙂
Being an anorectal cancer survivor with a colostomy your video was so enlightening and I now don’t feel so sorry for myself. Just wish I had seen your video well before my diagnosis. Best Wishes
Very touching video. I think you r a very brave intelligent man. Excellent content. Thanks for sharing your journey. My prayers r with you
Thanks for sharing, I hope you're doing well.
Thanks for sharing this information..may God give you long life