When Cancer Hope Network was founded in 1981, there was one support group for cancer patients in the state of New Jersey. Today, a wide array of supportive services are available. Our knowledge of cancer is increasing and the long-overdue research on the impact of social determinants of health (the non-medical factors that influence health outcomes 1) and health disparities (differences in health and health care between groups that stem from broader inequities2) are highlighting areas of need and directing efforts and rallying coalitions the disparities faced by various communities.
Cancer in Rural Communities
Country living has many benefits. from fresh air to a summertime full of ripe tomatoes and fresh corn, or easy access to extraordinary lakes and rivers. But when cancer arrives, small-town life can have challenges too.
“Rural populations experience cancer disparities across the cancer control continuum from prevention and incidence, to survivorship and mortality.”3 After diagnosis “Patients in rural areas face limited access to medical and oncology providers, long travel times, and low recruitment to clinical trials, all of which affect quality of care and health outcomes.”4
Fighting Cancer in a Small Town
Today, we meet one of the faces behind the numbers as anal cancer survivor and CHN volunteer mentor Terry shares the challenges she faced while receiving treatment far from home. .
Terry lives in Lilliwaup, a small unincorporated community on the west shore of Hood Canal in Washington. “The population on a good day is 469. A beautiful location with access to the ocean, Olympic National Forest, and its many hiking trails. Lilliwaup is beautiful, but it is remote.”
Terry’s story
In April 2019, I was diagnosed with Stage 2 Anal Cancer. I was blessed to have a primary care doctor in West Olympia, WA who called me immediately after learning of the diagnosis from my colo/rectal doctor. He asked if it would be ok to refer me to the oncologist that had treated his wife’s cancer 5 years prior, as well as refer me to his neighbor and colleague who is a radiation oncologist. Both were in Olympia, WA which is located about an hour from my home.
I felt reassured by my primary care doctor that he “had this.” Within days, I had appointments, a PET scan and was scheduled for the 6-week protocol of chemo/radiation that treats anal cancer. The first week and the fifth week I had both chemo and radiation on the same days. As the radiation oncologist put it, “this is like pouring gasoline on a fire” but it is an effective protocol and I learned I had an 80% chance of success. With that said, driving an hour each way every day for the 6-week treatment became an issue on day 3. Between the nausea and the potential for diarrhea, the hour-long winding road seemed long. The stress of having an accident in the car (vomiting or diarrhea) going to the appointment or coming back home from the appointment was very high. The windy road added to my nausea. I was basically just holding on, quiet and white knuckling it with each trip. Waiting in between the same day appointments was also difficult, just sitting in the car feeling terrible and hoping I didn’t need a bathroom.
After three weeks of enduring the driving back and forth, my husband made the decision to book a hotel room across the street from the radiation office and a short drive to the chemo center. This was the right decision at the time. As I endured the chemo and radiation the nausea, diarrhea and blistering in my private areas began making it difficult to walk, eat, or do much at all so having the hotel right there lessened my stress in a big way. This particular hotel because of its location to the radiation center offered cancer patients low rates and the staff were welcoming, considerate and offered encouragement each day and time I slowly walked through the lobby.
I am 3 years free of cancer now. Hallelujah! In looking back, I had the best care one hour away from home rather than two or three hours to either Seattle, WA or Portland, OR.
Home is always where a person wants to be when we aren’t feeling well but sometimes you must get creative to get through unexpected things to make it a little easier on yourself. A good medical team, an excellent support system of family and friends, and the ability to deal with the side effects as they come up are huge in getting through cancer. While cancer certainly is a “big thing,”, I found it is a lot of the little things that help you get through it a day at a time, and sometimes it’s a minute at a time.
Terry Kelly, Cancer Survivor/Thriver, Cancer Caregiver, Cancer Hope Network Support Volunteer and Cancer Hope Network Ambassador of Hope
Finding help when fighting cancer in a rural setting.
Cancer can be isolating – whether that isolation is brought on by friends who stay away because don’t know what to say or because clam beds and state parks are closer than the oncologist. Connecting with a volunteer mentor can help ease that isolation. Our Support Volunteers won’t recommend specific treatments or push city-based cancer centers, but they can help develop questions to ask your care team – wherever they are.
Being matched can provide a free and confidential connection with “someone who doesn’t know your family and friends, who never run into you or your husband at the store.”
To get matched with a cancer survivor or cancer caregiver mentor who understands, call 877-HOPENET or visit cancerhopenetwork.org/support.
- World Health Organization. (n.d.). Social Determinants of Health. World Health Organization. Retrieved September 2022, from https://www.who.int/health-topics/social-determinants-of-health#tab=tab_1
- Nadia Ndugga @nambinjn and Samantha Artiga @SArtiga2 Published: May 11, N. (2021, May 12). Disparities in health and health care: 5 key questions and answers. KFF. Retrieved September 2022, from https://www.kff.org/racial-equity-and-health-policy/issue-brief/disparities-in-health-and-health-care-5-key-question-and-answers/
- Zahnd, W. (2019, April 3). Access to cancer care in rural populations: Barriers and solutions. ASCO Daily News. Retrieved September 2022, from https://dailynews.ascopubs.org/do/10.1200/ADN.19.190161/full/
- Levit, Laura A., et al. “Closing the Rural Cancer Care Gap: Three Institutional Approaches.” JCO Oncology Practice, vol. 16, no. 7, July 2020, pp. 422–30, https://doi.org/10.1200/op.20.00174.
