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    This Four-Time Cancer Survivor is a “Head and Necker for Life” – Experts by Experience

    I identify myself as a head and neck cancer patient, and not just because of my scarred face—I don’t like calling myself a survivor in case I jinx it. Head and neck cancer never goes away. You are left with scars, defects, dry mouth, gaps where your teeth used to be, and often, ongoing checkups and medical procedures.

    When I joined a head and neck cancer support group in 2015, I became committed to providing support and advocating for fellow patients. Oddly enough, this has been one of life’s greatest gifts for me—I’m a “head and necker” for life.

    Second opinions matter

    The cancer started years before diagnosis in 2007, with a painful ulcer on my tongue that wouldn’t go away. After being told by a visiting oral surgeon that it was just a harmless lichen planus lesion, my general practitioner and I treated the pain and didn’t look any deeper. What annoys me now is that he and I knew we should have sought a second opinion. We did so with my ovarian cancer and that worked well; but this time we deferred to the authority of the oral surgeon.

    So, 2007: a minor operation leaving behind some dodgy tissue around the margins; a slight lisp, a return to work as a teacher—no big deal except that it was hard to read out the school notices first thing in the morning.

    Cancer pushes the limits

    And, two years later: a recurrence that really pushed me to the limits! Serious tongue cancer can lead to a gruesome all-day surgical ordeal. Usually, the patient has a portion of the tongue removed (50% in my case), and a flap of tissue from the forearm is sewn into place, together with the blood vessels that go up the inner arm. The flap has blood flow but no nerves. To cover the wrist wound, a thin slice of skin is taken from the thigh. Along with this, a neck dissection is performed to remove a number of lymph nodes. This is truly a horrible surgery requiring multiple drains, a doppler device to check blood supply to the flap and, worst of all, a tracheostomy so the patient can breathe through the neck because the mouth is swollen—no talking is permitted for 8 to 10 days.

    Despite all this, I recovered well. I attribute my bouncing back quickly to my love of exercise; a little bit more walking each day until you return to normal fitness.

    Taking cancer to another level

    The year 2014 saw a life-changing event, a recurrence, low in the inner cheek—the buccal mucosa—not far from a previous tumor. I underwent a similar operation without the tracheostomy—a quicker recovery from surgery, then radiotherapy that took me a year to get over.

    During head and neck cancer radiotherapy, your head is clamped down in a mesh mask and the inside and outside of your face, neck, and mouth are burned by the treatment. This takes cancer treatment to the next level. Some people have chemo with the radiation, making it a lot worse, but I didn't need that and actually found the caring nature and everyday routine of the radiation oncology unit comforting and supportive.

    A new normal

    After finishing these treatments in May 2014, I was faced with a new normal: a cut nerve, no front teeth, a sucked in lower lip, a deep, crooked scar on my chin and “oral incontinence.” I could no longer hold fluid in my mouth and had to hold a thick cloth to my mouth while eating and drinking. I had trismus (limited mouth opening). I could no longer eat anything but the softest of foods and that also had to be covered in gravy or custard.

    Some of these things could be worked out. Dentures were uncomfortable but they gave me the ability to smile sweetly. I kept a supply of face cloths by my side at all times. I had to work hard to pull myself out of isolation. A major contributing factor to a better life has been joining a support group, and helping to put it online for New Zealanders and overseas patients. My English teaching skills were put to good use, taking down minutes of meetings, publishing a newsletter, helping run a website and blog, and starting a busy Facebook support group.

    Supporting others online is fulfilling. Today, the sense of connection and purpose from connecting with others in online health support groups has made my cancer a benefit rather than a curse.

    Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

    About the author: Maureen Jansen, 71, a former English teacher and four-time cancer survivor, is a grandmother of two and mother of three. She had ovarian cancer in her 40s, and head and neck cancer with recurrences in 2007, 2009 and 2014. She is fit and well, but scarred and slightly disabled from all the treatments. She lives in God’s Own Country, New Zealand. Find her on Twitter at @HNCMaureen
    From https://socialmedia.mayoclinic.org/2018/08/03/this-four-time-cancer-survivor-is-a-head-and-necker-for-life-experts-by-experience/

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    Psychological issues: depression, suicide, uncertainty, disfigurement, PTSD, sharing the diagnosis, and source of support in head and neck cancer patients

    Head and neck cancer survivors, including laryngectomees, face many psychological, social and personal challenges. This is mainly because head and neck cancer and its treatment affect some of the most basic human functions - breathing, eating, communication, and social interaction. Understanding and treating these issues are no less important than dealing with medical concerns. Post-traumatic stress disorder (see below) is one of the psychological results of laryngectomy and is more common in females.

    Psychological responses and support needs of patients following head and neck cancer

    https://dribrook.blogspot.com/p/overcoming-depression-after.html

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    • Dkatsmeow's Avatar
      Dkatsmeow

      And that is the truth! My social life is nil. But I have trouble enunciating words since I can't move my mouth like I should anymore on top of the fact that my voice is very hoarse & whispery. Can't eat, throat is paralyzed on one side. then there is the lymphodema. I liked it better when I was in denial. Guess I can't stay there forever. And the cancer has recurred once, so who knows. Then I fell and broke my hip. Doc said it was because I had no padding at the time. I only weighed 68 lbs at that time. I am now up to 100. Even still my activities are limited by what my hip can do. Not exactly up to salsa dancing! No I am not a happy camper.

      almost 3 years ago
    • Dkatsmeow's Avatar
      Dkatsmeow

      Why can't they find a way to treat us without doing so much damage to us? I told the doctors I didn't want a stoma. I don't know if that had any bearing on what they did in surgery or not. I did have a stoma for about a week. And I did hate it. I know I was breathing but I didnt; feel like I was. I had some panic attacks over that. But that doesn't change the fact that I cannot eat. This cancer takes away some very basic human functions. You would think someone would find a way to repair/correct or keep the cancer from causing them to begin with. I am not concerned about the talking thing. I can communicate when I want to.But being able to breathe & eat normally would be a life saver. I have been reading some articles about the suicide rate amongst h&n cancer patients. I understand. I told my husband I am just too much of a coward to go that route, but doesn't mean I don't feel that way.

      almost 3 years ago
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    HPV Leads To Increase In Head And Neck Cancer In Men
    The number of head and neck cancers caused by human papillomavirus is on the rise. A solution to the epidemic is available, but doctors say it isn't being utilized enough..

    https://www.nbcdfw.com/news/health/HPV-Leads-To-Increase-In-Head-And-Neck-Cancer-In-Men_Dallas-Fort-Worth-469657223.html

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    Shawnee Mission Health to fight cancer with nation’s top ranked treatment center

    Shawnee Mission Health announced Wednesday it has become the 17th hospital in the country to join the MD Anderson Cancer Network.

    The designation gives Shawnee Mission Health staff streamlined access to doctors from the Houston-based hospital system that U.S. News and World Report ranks No. 1 in the United States for cancer treatment.

    “It is not every day you get to work closely with the top experts in as challenging an area as cancer care,” said Samuel Caughron, a pathologist at Shawnee Mission Health. “From a medical staff perspective, this program and the value it brings to our community; there’s palpable excitement about what this is going to mean for the patients at Shawnee Mission.”

    read full article-http://www.kansascity.com/news/business/health-care/article184728008.html

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    Your hair might grow back different from how it was. Here is someone that had gray hair going in and came out dark.

    https://flipboard.com/topic/cancer/new-drugs-turn-cancer-patients%E2%80%99-gray-hair-unexpectedly-youthfully-dark/a-Whz26CupTTKHNW_i3kJkWA%3Aa%3A83519396-3cc66e37a0%2Fsuntimes.com

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    In case anyone is interested in Gardening, Lawn and Landscape tips here is a link to my Company's website Blog, subscribe to it and you will get our weekly Blog posts' with tips and tricks to help you keep your lawn and landscape in tip top shape through the year. www.LawnMastersLLPC.com/blog

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    Researchers See Promise for Two New Therapies for Mantle Cell Lymphoma After Discovering Why Tumors Can Become Resistant to a Newly Approved Treatment

    http://weill.cornell.edu/news/news/2014/07/researchers-see-promise-for-two-new-therapies-for-mantle-cell-lymphoma-after-discovering-why-tumors.html

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    https://www.facebook.com/photo.php?v=585242171508934 If you have never been to a Relay For Life Event to walk in the Survivors Lap, here is a view from the Survivors Banner as we walk a lap at Henry County Relay For Life in TN.

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    My 5 month checkup went well, no signs of any problem. I was graduated up to yearly checkups. So that's good news. I am 4 years out, and the Doctor actually used the C word, the good one, says I am considered cured if I clear the next year.

    Gives you a warm/fuzzy feeling.

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    @ticklingcancer have you tried using the tagging feature?

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    Had my 4 month check up today at Vanderbilt in Nashville. I had my throat scoped, a chest X-ray, and blood work.

    All is well in Cancerville for another 4 months.

    2 Comments