Oral, Head and Neck Cancer Awareness Week is April 10-16th. During this week there are educational talks, fundraising opportunities and patient support initiatives. Keep in mind that free screenings are always available at sites throughout the United States. To be able to provide some advice to those affected by these cancers, I asked oral, head and neck cancer survivors to answer two questions for me:
- What is the best tip you could give a fellow patient going through treatment for head and neck cancer?
- What is the one piece of advice you would share with someone who has completed treatment for head and neck cancer?
When asked for tips for those going through treatment I received many similar answers. The most common answer was to bring someone with you to all of your appointments. You are looking for a “sensible” person. Choose a support person who will help you get all the information, ask appropriate questions, and so on. One patient referred to going to appointments as “…like standing in front of a fire hose with a dixie cup.” Appointments can be overwhelming for many reasons including fatigue, chemo brain and stress. Not only should you choose an appropriate support person/advocate but also someone who can help you record everything that happens. Keep track of all of your appointments, medications and treatments in chronological order in one place. If you need help with this OncoLink has sheets that you can fill in to keep in a binder and help you keep track of everything.
The second recurring theme in the answers to my first question was to keep a positive and patient attitude. Treatment for cancer is challenging on both a physical and emotional level. Suggestions to keep a positive attitude included being easy on yourself and keeping in mind that there are going to be good and some not so good days. Another patient suggested trying out complementary medicine practices (after you get the ok from your providers). Practices such as reiki, yoga, counseling and guided imagery can promote peace of mind and even a distraction from the challenges being faced.
The most common answer I received to my second question of what advice would you give someone who has completed treatment is to join a support group. “Don’t walk away” from everything you just went through, join a support group and go to a couple of meetings before you decide that it is not for you. Keep in mind that all cancer journeys are different. Your story will be nothing like that of your neighbor who received treatment for breast cancer, but it may be similar to that of someone who is in a support group for oral, head and neck cancer. If you are interested in joining a support group the site “Support for People with Oral and Head and Neck Cancer” can direct you to a local chapter.
The second recurring theme in the answers to my second question is to develop a plan for after treatment. Oral, head and neck cancer survivors face many challenges even after treatment is done including the long-term side affects of the treatments used. You may want to work with your team to create an exercise plan to keep mobility in your neck and shoulders after treatment with surgery and radiation. Treatments can affect your eating habits and your dental hygiene. Work with a nutritionist to maintain proper nutrition and if you are having difficulty with swallowing or speaking you will want to work with a speech therapist. Find a dentist who works with patients who have been treated for these cancers. By setting up a care plan with your team you will be able to better manage these affects. If you aren’t sure where to start you can create an OncoLife Survivorship Care Plan to guide your life after treatment.
Hopefully, these answers can help better prepare you for life during and after treatment for oral, head and neck cancer. If you want to learn more about oral, head and neck cancers, OncoLink has information for you. Thank you to the SPONCH group at Penn for your honest and heartfelt answers to my questions and for enabling me to share your wisdom with others.