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