Some very kind folks helped me write this. I had been contemplating the idea of asking those who know the most about head and neck cancer, some questions. No, I didn’t go to doctors or nurses. In fact, I did not go to the medical community at all. I went straight to the source. The head and neck cancer patients, themselves – via my support group on Facebook. I joined the group earlier this year and it’s one of the best decisions I’ve ever made. I was unaware that such groups even existed. The woman that designed my website suggested it. These people are on the front lines, so to speak….
I asked my friends to put together a list of helpful tips for people who are newly diagnosed with a head and neck cancer, but also for the family and friends who may be support persons and doing whatever they can to help. I enjoy sharing with you, my own journey, but it’s time to ask others to share their own thoughts on this important subject.
Here are some side effects that were sent to me from those that are most familiar with an undesirable situation due to a head and neck cancer and suggestions for a plan to help you stay on the right course.
Before we get started – Let’s start with a description of Lymphedema….
Head and neck lymphedema occurs when the body is unable to transport fluid due to damage to the lymphatic system. It happens when scarring from a surgery blocks lymphatic vessels in the neck or the lymphatic system is damaged by radiation therapy. Because the fluid isn’t easily moved, it rarely recedes on its own.
“It may a take a speech pathologist with a sub specialty in head and neck lymphedema to help you.” – Natasha W.
“I’m working with a speech pathologist right now and also an occupational therapist. My occupational therapist is a lymphedema expert and has helped me a lot.” – Greg G.
“Dental clearances are important. Find a dental team that understands the complexity of your situation after you have finished radiation. Radiation typically dries and damages the saliva glands that make the decay of your teeth go faster. Hyperbaric oxygen may be a possible treatment should your teeth need to be pulled post radiation, for a better chance of healing. Fluoride trays are advised while going through radiation and possibly for the rest of your life, if you are able to keep your own teeth.” – Natasha W.
One of the most important things – Doctors, please read the notes before a patients appointment. It’s difficult to keep everyone on the same page. When they ask to speak to my wife, I have to explain that she lost her tongue and voice box due to her cancer and I shouldn’t have to do this.” – Paul F.
“That second opinions are okay and this should be more normalized. It helps you understand and hear the perspectives (and even personalities) of different providers to help you decide what you would like to do in your care path. Never doubt yourself, even if a doctor cannot respect your decision.” – Natasha W.
“When I first got a second opinion, I felt like I was cheating on my doctor, but it’s my life and these people don’t live it. I do.” – Kelly M.
“It’s okay to fire your doctor. Trust your gut.” – Tara W. J.
Understand that your doctors are going to give you information on what’s to come with side effects and treatment damage to your body. They may downplay this to a degree so that you don’t become overwhelmed and fear every moment. They realize you will discover what your side effects are going to be. Most doctors try to keep an air of positive thoughts, so you can keep moving forward.
My greatest suggestions that I give to others going through treatment, are these….
- Try to forget about how much pain and discomfort you went through yesterday
- Try your best not to worry about what may come your way tomorrow
- Focus on getting through today
- If needed, look towards getting through each hour
“It will get better and it takes time. Time does pass and side effects should fade. The challenge is to learn patience in order to work on fear.” – Todd G.
I got such a wonderful response from these “Cancer Warriors” that I may do a part two…. Stay Tuned….
Thanks, again, to everyone who participated….
Until Next Time – K xo