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No day on the beach: A colon cancer survivor's story

No day on the beach: A colon cancer survivor's story

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases will share their unique stories; the latest comes from cancer survivor Mark Nelson.

My family and I have always enjoyed the beach, and our goal this past summer was to spend time on one, soaking up the sun and swimming in the ocean. I had a little challenge, though: I’m a one-year colon cancer survivor with a permanent colostomy and a small hernia alongside my stomach. My stomach bulge is bigger than the average person’s, and that’s something that can’t be hidden on a beach.

It was easy to think when planning our vacation that I would have no problem with taking my shirt off and enjoying the sun like everyone else. But I found that as soon as I removed my shirt, people on the beach stared at me and the black tube top I wear to try to conceal my bag and stoma. I was very uncomfortable and felt like a freak.

I’m a cancer survivor. I’ve been through so much. Even so, I wasn’t prepared to feel that way that day. I wish somehow I had been more prepared.

In fact, I wish I had been better prepared for much of my cancer journey.

I was diagnosed with colon cancer in March 2011. We were never actually told by a doctor I had cancer, though: We found out when we received a phone call from the surgeon’s secretary to schedule an appointment with him. She introduced herself as being with the colon cancer department, and when we heard that we knew this was a far graver issue than anyone had told us.

We went to visit our surgeon. He did a finger rectal exam, and it took him ten seconds to tell me I needed surgery and was going to end up with a stoma and a permanent bag. He kept saying that I was young and that everything would be okay. Well, having a bag and a permanent stoma did not feel okay to me. My life was about to be changed permanently, and I barely had time to process it all.

I had my surgery three months later. After surgery, I had a bag on and a catheter, and I came across a nurse who made an insensitive comment about my stoma. She and many of the other doctors and nurses I came across educated me fairly well about my disease and what was happening to me, but they were often blunt and to-the-point when they spoke with us. I questioned whether they had any concern about my mental well-being, and I wished for someone to ask my wife and I how we were handling all the new information and to give me an opportunity to talk about how I felt.

I was concerned that this disease and its aftermath would be changing not only my life but also my families’ lives. I felt out of sorts, confused, not in control – kind of the way I felt at the beach.

I wound up doing four months of chemotherapy after eight weeks of recovering from surgery. Nobody warned me I would feel like I was on my death bed while undergoing chemo, but I did. I  had nine treatments, I lost 45 pounds, and my wife and I didn’t know if I was going to make it. We were both scared: Scared that I might not get through this, scared that my cancer might come back after the treatments, and scared about what our life might be like.

We knew we had to fight to get myself back on track, so we set a goal of traveling to see our kids and to go to the ocean. When we heard I was cancer-free one year out from surgery and chemo, we booked our trip.

And back to the beach: Just as I felt unprepared and not totally supported during my diagnosis and treatment, I hadn’t been prepared for feeling so self-conscious with my shirt off in public. But standing in the sand that summer day, I knew I had to be strong enough to get through it – just as I got through the cancer. And so, I went from thinking that everyone was looking at me and feeling sorry for me or wondering why the heck I had that stomach bulge and was wearing that weird sleeve to accepting that I’m a colon cancer survivor. And feeling proud of it.

Mark Nelson and his wife live in a small rural town in Northwestern Wisconsin. Mark is a high-school math teacher as well as  an entrepreneur. More on Mark’s colon cancer journey can be found on his blog.

74 Responses to “ No day on the beach: A colon cancer survivor's story ”

  1. Mighty Casey Says:

    Mark, you have a terrific opportunity to educate people about what colon cancer looks like. No, I don’t mean by showing them your scans. I’m thinking that you could get a tank top to go over your tube-top, and have “I am the face of colon cancer” printed on it. Use a graffiti-style font. You could even put “Kiss my butt, colon cancer!” on the back, also in graffiti.

    Take people’s discomfort quotient and turn it into a teaching moment with a touch of laughter – you’ll start all kinds of conversations (won’t hurt your new business!), and make at least several new friends.

    I wear a large magnetic name badge all the time that has my book’s cover image on it. Title? “Cancer for Christmas”. Yep, I walk my talk.

  2. Crawford Says:


    I’m glad you made it through treatment. It’s sad how lacking in personal skills many medical professionals are. My diagnosis went much the same way. I hope things are better now.

  3. Randy Henniger Says:

    Excellent blog post, Mark!
    You ROCK…Randy

  4. Kathleen Says:

    I’m sure that your story will inspire so many others who are trying to cope with their new body images to not give up on life’s many small pleasures. I hope your day at the beach soaking up the sun turned out to be a good experience for you despite your first feelings of self-consciousness because of the stares. Best wishes to you as you adjust to your new normal!

  5. Nancy Finn Says:


    I am an author and wrote the book e-Patients Live Longer, The Complete Guide to Managing Health Care Using Technology. I tell you this because your story is so typical of what is happening today in medicine. I devote myself full time not to selling books but to working to convince people to become engaged empowered patients (this is what I talk about in the book) It is a place where you seem to have come to after a hard journey.

    As an empowered patient going through the treatment process, you would have asked those medical providers who were treating you for all of the details about what to expect from your surgery and from your treatment so that there would be no surprises. You would insist on open communication 24/7 access so that you could stay in touch with your providers and ask for someone that you and your wife could talk to about the emotional impact of what you were going through. I am not saying this to criticize you. Quite the opposite. I am praising you for getting to where you are now in spite of the odds. I support your insights today that you wrote about.

    In my own experience with breast cancer I have been lucky enough to encouter 99% caring, kind providers. However, I constantly pin them down when I have concerns or questions – something that all patients have the right and responsibility to ourselves to do.

    Good luck. There are a lot of people out there today who are advocating for patients like you and communities like inspire that clearly help all of us.


  6. Carmen Gonzalez Says:


    Thank you for sharing your story. As I read it, I kept thinking how imperfect healthcare communications are at many hospitals to help patients prepare for their oncology treatment journeys. From videos to pamphlets, simply walking the patient through an average day during treatment, and afterwards would make a huge difference in helping patients cope. I am tweeting this blog of yours, hoping that more healthcare providers take heed.

  7. Maureen Williams Says:


    thanks for sharing your inspiring story with us – sorry you and your family weren’t supported by the medical practitioners – it’s amazing so many people get treated as “a disease” and not as a person! congrats on your 1 year cancer free and best to you and your family!

  8. Molly M Says:

    Your courage and honesty are an inspiration! I’m so glad that you have been given this forum to share your insights with others who are facing cancer as well as their health care providers.

  9. Jerry Says:

    You are a true inspiration. Cancer patients can learn so much from you. Paying it forward is an awesome thing. Thanks for sharing.

  10. Bruce Says:

    Mark… Sat in front of you at our last convention and met you there for the first time. From your incredibly positive attitude, I never would have known this was your story, nor would have known you were a survivor had you not told me. What an incredible tribute to life and the power of positivity, that you can share your story and be such an inspiration. Best wishes to you in your future!

  11. Gary Washburn Says:

    Beautiful, transparent story. Mark and I are both entrepreneurs in the same company. Mark is a winner! Thanks for sharing this story.

  12. Matt Ficocello Says:

    Mark- you are a wonderful man,and with the love & support of your wife Nancy, the GREAT family & friends, and ofcouse our Lord, you have made it!! thanks for sharing this story, and forcing some to become human… God’s Blessing now and forever ! I love ua man !!

  13. Anne Says:

    So proud of you……congrats on getting your article published. You are an inspiration to so many!!! Keep the Faith!

  14. Mary Says:

    Hang in there and let people know about what you have gone through and came out on the good side. You are a survivor and positive example for all.

  15. Kathy Paauw Says:


    Thank you for sharing your story. You have incredible courage and strength and you are an inspiration to many who need to know there can be a positive outcome. I am certain that your positive attitude has a lot to do with you being here today.

    I am so saddened to learn when medical professionals get too busy to remember that their “customer” is a human being with feelings. So sorry to hear about how you learned you had cancer, and the insensitivity of some of your caregivers. My husband teaches medical students, and he has an endowed chair in “Patient-Centered Teaching.” One of his goals is to teach future doctors to put the patient first, get to know them as a whole person (not just a body part that needs to be fixed), and treat them with the dignity and respect that they would want to be treated with if they were the one wearing the gown.

    Even though some people are working hard to teach medical professionals the art of compassionate patient care, I’m afraid that it goes far beyond how and what they are taught. Our system has become so broken, and doctors are being pushed by their employers or group practices to keep their “productivity” up and see more patients in less time. The burnout is incredible. When medical professionals are short-fused because of the pressures put on them, sometimes they forget the human side.

    I am not saying this to excuse the behavior, but to ring a warning bell that our whole healthcare system is broken and must be overhauled. I hope that you found compassion in some of your health care providers along the way. As a whole, they have good hearts and care about people, but have gotten beaten up by working in a broken system that pressures them to practice medicine in a way that feels devaluing to the human spirit.

    I am inspired by you. Thanks again for sharing your story. Blessings to you and your family.

  16. Peg Krueger Says:

    Thanks for sharing you story. I am so happy that you are cancer free. I will keep your family in my prayers.

  17. Mark Nelson Says:

    Hey Mighty Casey,

    Thanks for your encouragement. I like your tank top idea.

    I have goal to run a couple of races this coming spring and summer. Looking for a running shirt that advertises I am a colostomy survivor.

    Where can I find your book?


  18. Mark Nelson Says:

    Hi Crawford,

    I’m doing well. Still have neuropathy in feet and hands but it’s going to go away.

    I had great support at home. I feel for the people who are by themselves.


  19. Mark Nelson Says:

    I am trying to follow your example Randy Henniger. I am thankful that I just paid attention to my body. And somewhere I read or heard that I better get things looked at to survive this if it was cancer.

    You ROCK!! Randy

  20. Mark Nelson Says:

    Hi Kathleen,

    I hope my story helps people. Nancy and I so looked forward to our vacation I had to take my shirt off. Then I had to get over the stares.

    We had the best vacation and after the first day, it didn’t matter any more.

    I was on the BEACH!


  21. Mark Nelson Says:


    I am going to have to search out your book. I hear what you are saying. I think part of it, as a man I’m not supposed to be asking questions.

    During my chemo I was talking with someone about supplements to help me through this and she said the same thing. I

    I have to take control of my health. Keep good records of everything and always ask questions.

    There were just times I couldn’t get answers to the questions I was asking.

    I am so glad I ran into Inspire. Dealing with my stoma and getting used to everything was hard. The forum helped me so much.

    One, I found out I was on track and two, I found I could help people with their journeys.



  22. Mark Nelson Says:

    Hi Carmen Gonzalez,

    My oncology nurses were angels. Thanks goodness I they were there to help me.

    At times, it felt like everyone was trying but there was just so much coming at us. Going through this, you are stunned and kind of just walking through it all.

    I felt I was lucky because I had my family and friends walking me through this. I have no clue how people who are by themselves get through it.


  23. Mark Nelson Says:

    Hi Maureen Williams,

    I know a lot of people don’t know how to be around people with “a disease” And I don’t think I was very good being around people with cancer etc. Now I look at them different and see if I can help.

    It feels good to be 1 year cancer free and I’m looking forward to being 30 years cancer free.


  24. Mark Nelson Says:

    Molly M!!!

    I don’t know if I had courage. I just knew I had to get through it. I want to be able to hold my grand babies. (Of course my kids have to have some babies and after they get marries)

    I think my heritage had something to do with it.


  25. Mark Nelson Says:

    Hi Jerry,

    Thanks. Again, I don’t know if I’m an inspiration. I just was hoping I could help somebody.


  26. Mark Nelson Says:

    Gary Washburn,

    Love our company. Helped me through all this. I would send a card when I was not feeling very good. Made me get out of my “pity party” and think of someone else.


  27. Mark Nelson Says:

    Hey Bruce,

    I remember you from convention. The convention was my first reward to myself. First trip away from home and dealing with everything by myself. Gave me great confidence.

    I met some great friends and I had many people help me throughout the day.


  28. Mark Nelson Says:

    Matt Ficocello!!!

    Part of my getting healthy was reading your posts on facebook. You always made me laugh.


  29. Mark Nelson Says:


    You’re an inspiration to me. I’m not giving in to anything. My goal is a book but how does a Math teacher write a book.

    I need help.


  30. Mark Nelson Says:

    Thanks Mary!

    I am a survivor and boy does that feel good to say.


  31. Nicki Pousson Says:


    We have received several cards from you and the positive attitude you have on life is truly amazing.

    I’ve been putting off having a colonoscopy for too many years, but your story has inspired me to go. My appointment is October 11th!

    I grew up in a family of doctors so I can relate to the way your cancer was treated by the medical field. My father was a DO as well as his twin brother. Two totally different ways of dealing with people. My dad, although to the point showed compassion and often made house calls years after doctors stopped doing them. He also taught at Michigan State’s medical school. My uncle however was often too self absorbed to show any compassion.

    I hope that you will continue to reach out to other cancer patients and help them along the path of understanding. I think you have sure a bright future for sharing with others.

    I am honored to know you and feel anyone who comes across your path will feel the energy and enthusiasm for life that you carry with you! May your life journey be blessed!

  32. Mark Nelson Says:

    Hi Kathy Paauw,

    I’m a high school Math teacher so I can relate what the doctors are going through.

    I did find compassion with many of them. My oncology nurses were the best and so were the night nurses on the surgery floor.

    Like you say doctors and nurses are being pushed to keep their “productivity” up. I could feel that. Not with all of them but sometimes they just didn’t have time for me.

    I’m sure they hear the same questions all the time but they were the first for me.

    Blessings to you and your family,


  33. Mark Nelson Says:

    Hey Peg Krueger,

    Thank you. I’m happy to. Have way too many things to do yet.

    I will take your prayers :-)


  34. WhiteStone Says:

    Very, very glad you are a survivor. Cancer sometimes makes us visible. Sometimes invisible. When we are visible is when we can inspire, help, educate, etc.
    Bless you!

  35. Gail Says:

    Mark, your story is very moving, but the line of the story that stood out to me was : “standing in the sand that summer day”. How wonderful it was that you WERE standing in the sand that summer day! And Mark, you are here with us today! I’m so glad you could see your way through this….that takes a lot of courage & insight. Bless you.

  36. Cheryl Says:

    Thanks for sharing Mark,
    Your story can help others prepare and be educated. I once had a doctor tell me at 24 years of age that I had to have both of my knees replaced… at the same time! It was unexpected and frustrating and 2 other consults later, not necessary.
    Glad you were able to enjoy the Beach!


  37. Mark Nelson Says:

    Hey Whitestone,

    I plan on being visible. See if I can help some one.


  38. Mark Nelson Says:


    You made me smile. I was standing in the sand.

    At times I thought I wasn’t going to get there.


  39. Mark Nelson Says:

    When I first got diagnosed Cheryl, I didn’t know what to do. I was at one of the best hospitals and had one of the best surgeons so you think they are the experts.

    I did get a second consult and was told to stay where I was. So we felt comfortable going in that what we were doing was right.

    Scarey though.


  40. Julie Muller Says:

    Hi Mark,
    Thank you for the courage and bravery you have shared here today and all through your understanding, treatment and recovery. Big hugs to you and your family as you enter the next amazing stages of your lives.

  41. Evelyn (Kiesch) Teitelbaum Says:

    I am so happy for you that you are doing so well and although your apparatus would be a teaching moment, some people are shy about that. Your story inspired me in another way though, my job at the radiology group I work with is to make sure our patients get the very best care and they are nurtured and do not feel like they are a number. I think often we believe we do that, but when a patient is going through scary PET scans and procedures, we need to double our efforts to make them comfortable.

    Your are truly an inspiration. Good luck to you and Nancy!

  42. Mark Nelson Says:

    Thanks Julie,

    We are going to have some amazing stages in our lives. Can’t wait.


  43. Mark Nelson Says:

    Hey Evelyn,

    I bet you are great with your patients. That’s just who you are. I’m sure your patients are blessed.


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  45. Arlene Johnson Says:

    Hey Mark, I knew you would make it!! I spent hours waiting in my daughters room for the Dr. to come in when she had brain cancer, only to find out he had been on the floor and seen other patients, but would not come into her room because I was there. He absolutely hated to talk to patients families. I learned that later, because I was his office nurse, and watched him do this over and over again. I ended up doing all the talking for him.

  46. Sue Towne Says:

    Facing your fear of revealing your device and doing it anyway at the beach speaks volumns of the strength that you have. Wonderful story. Thanks for sharing.

  47. Lindsay Says:

    Mark you are an inspiration to everyone! It is very sad how the medical staff can treat their patients. You have overcome so much. I am in “ostomate” myself minus the cancer for crohn’s disease and I know how debilitating it can be to not feel like everyone else, feeling judged and that you gave up. Many people do not understand these diseases and what we go through emotionally. I too am young and am facing my third surgery in a few weeks to remove my colon and all the parts that go along with it :) thanks for sharing your story!

  48. Carol Pitter-Kopp Says:

    So happy you were able to rise above the negative experiences and decide to live in the here and now rather than ‘die’ in your head. I pray for your continued strength and for your family as well. Be blessed.

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  50. T.J. Pinta Says:

    Read the article and saw so many parallels to my own journey with rectal cancer. I was diagnosed in Nov. of 2010 and went through the standard protocol at Moffitt Cancer Center in Tampa. The radiologists and chemo Doctors wee fantastic. They had a real concern for me in all they did. The surgeon I was dealing with was another story. He was very clinical in his dealing with me. Wouldn’t listen and was very patronizing and treated me like a teenage girl when I asked questions about non-surgical options. I went outside Moffitt to a Doctor at the University of South Florida who practiced at Tampa General Hospital. He suggested an alternative route I might try and was caring and concerned for me as a person, not a test subject. The alternative treatment didn’t work and I had surgery in March of 2012. Today I have gained back the 50+ pounds I lost along the way, am healthy and cancer free.

    Your story outlined the same concerns, feelings and doubts I have had to deal with. But, today I have re-connected with a life long friend, who has stood by me through it all. It’s so much fun falling in love with a friend. Feel 16 again.

    Thanks for sharing your story and bringing it to our attention on Inspire.

  51. Debbie Says:


    Thanks for sharing your story. I too know first hand how the medical staff treats their patients from a caregivers point of view. Glad to see your sharing your story with the medical field. I also feel that those organizations that reach out to those with cancer like the American Cancer Society should be made aware. By making them aware of how you feel it will change how patients are treated. If you don’t mind I would love to share your story with my local American Cancer Society (ACS) office as I volunteer with them on an ongoing basis.

    Glad to hear your cancer free and I pray that it continues. Wishing you and your family all the best.

  52. Kathleen Hoffman, PhD Says:

    Thanks for sharing your story. It is not at all an unusual occurrence to be left without emotional support before, during and after cancer treatment.

  53. pat Says:

    in 2011 i went to the hospital with pain in my stomach. after hours of waiting they took out my appendix. ( i want to tell you that before this i was being treated for pain by a rheumatologist) went home and 2 days later iwas back, throwing up, in horrible pain, they sent me home, said i would be fine. same nite went back and they kept me. next day said i have enbolism moving to my heart. dissolved it and put in a stent in my leg. pain continued. went to my doctor who sent me for a colonoscopy. sure enough cancer in my colon. surgery was done and i had no bag, ruptured and bag put on. from there i went to a nursing home and on to chemo. in october was told it was gone and i was cancer free. i am doing ok now i guess, lots of depression, no insurance, nothing, but plugging along. emergency rooms and doctors need to know what they are looking for before they start cutting. when i finally found a doctor that did know that i had stage 4 colon cancer. he saved my life and right now iam doing well.

  54. Grace Strachan Says:

    Mark Thank you for having the courage to share your story. Always remember that most people’s hearts are in the right place but usually their foot is not. It’s in their mouth. Your strength is an ispiration to us all. Please let me know your address as I would love to send you a card!

  55. Mark Nelson Says:

    Hi Nicci,

    I am so glad you have an appointment. If I wouldn’t have found out about my tumor early who knows what would have happened.

    I am going to reach out to other cancer patients. Anything little bit I can do.

    Blessings to you,


  56. Mark Nelson Says:


    What a sad story. I always wanted Nancy in the room with me when the Dr’s came in. Just so she could help me figure out a game plan.

    I bet you were a blessing to many families.


  57. Jennifer Anderson Says:

    Thanks for sharing Mark! Your story is an inspiration to me and yet another reminder to be thankful and grateful for every day we are given….we are here for a purpose…Let’s change lives :)

  58. Mark Nelson Says:

    Hey Sue Towne,

    It’s all due to our Cumberland upbringing. Small town, great people, and great role models. We were all trained this way.

  59. Mark Nelson Says:

    Hi Debbie,

    That’s why I wrote the article. There are so many great care givers. I hope they realize how important they are in the lives of the people they are working with.

  60. Mark Nelson Says:

    Kathleen Hoffman, PhD

    Unfortunately it is a common occurrence to be left without emotional support. Support might help healing the most!

  61. Mark Nelson Says:


    What a story. I am so sorry. I don’t know if anyone knows the financial toll this can be on someone.

    Thank goodness you found a Dr. that found your cancer.

    Blessings and peace,


  62. Mark Nelson Says:

    Grace Strachan,

    I sent you a PM with my mailing address. Would love to exchange info.

    I think my story is just starting.


  63. Mark Nelson Says:

    Hi Jennifer Anderson,

    I think you are right, we are put here for a purpose. I don’t know why this happened to me but I can maybe help someone else. :-)

  64. Mark Nelson Says:

    Hey T.J. Pinta,

    Our stories do sound familiar. I looked at an alternative surgery. In fact brought it up with my surgeon because he could do it.

    He said he wouldn’t do it with me because of the outcome, so we went with his first idea.

    I lost 45 pounds. Put about 10 back on but I really want to stay slim so my bulge doesn’t stick out so much.


  65. Nancy Nelson Says:

    You rock there super star and I am so very proud of you! You are my stud man!

  66. Kari Kallio Says:

    Marky-Mark…you are so awesome and such a great reminder to not take anything in this journey called life for granted. Keep on living the good life… you deserve it!

  67. Sherri Frye Says:

    Hi Mark,
    I really appreciated your story. It is so important for those who are going through something like this to have encouraging words from those have been through it and survived. god bless you and your family!

  68. Tavia with Fight Colorectal Cancer Says:

    Hello Mark,

    Thank you for sharing your inspiring story. It takes courage, not only for you to be on the beach that day, but to speak out about being a survivor. As long as people continue to whisper and stare, but aren’t aware or informed about screening, colon cancer, colonoscopies and ostomies will always be a taboo subject. Thank you for stepping into the sun.

  69. pat Says:

    Hi Mark,
    Thank you for sharing your story. My husband and I are both “beach people”. We to have encountered some medical professionals with absolutely no compassion! We appreciate honesty but some of these doctors need to realize they are dealing with people and not just a body! I have rarely left an appointment without bursting into tears. Glad you had your day in the sun! My husband also has colostomy bag and I hope he has the courage to hit the beach next summer, bag and all. Best to you and your family!

  70. Joanne Putnam Says:

    Loved your story, Mark. I had several colon cancer recurrences (originally stage 2). My doctors and nurses were mostly understanding. The fear I felt is hard to describe. Someday I’ll share these experiences. Careless mistakes were made along the way, and I was so anxious to have surgery, I didn’t choose the best surgeons or the best place/equipment for radiation. I now have advice for others, which perhaps I should share. My rural hospital acquired a new radiation machine a month after I had treatment. I wish I had waited a few weeks rather than be exposed to massive doses which ended up destroying my intestines along with my colon. Now I have Short Bowel Syndrome. I don’t think the radiation oncologists even realize what happened to me, as they did no follow up. I thought medicine was a science?
    But I’m here, twelve years out — alive, happy, but a bit rough around the edges. Reading posts like yours can be uplifting.

  71. jeff houston Says:

    Hi Mark,
    Just read your remarkable post and it brought back many similar memories. I am a colon cancer survivor for 4 years now and still cancer free. I awoke from my first surgery resection with the shock of learning that I had a colostomy bag. I had it only 4 months after that they did the reversal surgery.
    Those 4 months of dealing with the bag and my treatments were tough and it is only through God’s grace love and mercy that I endured. Hang in there!

  72. contactpapillon Says:

    Very real and touching story. Thanks for sharing.

  73. lana schultz Says:

    From Wisconsin here to. Sept last year diagnosed with rectal cancer. Did radiation & chemo, had surgery now permanent bag and just finished first of 10 more rounds of chemo. Thanks for sharing and God Bless!

  74. najoo Says:

    dear mark
    thnx for sharing your great story. my husband is diagnosed with colorectal cancer recently and he is 39. I am terrified and I dont know how could it be after colestomy surgery. I wanted ti ask if u can answer some of my questions. thank you


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