Let’s Talk About Support
By: Don Sublett, Stage VI Tongue Cancer Survivor and HNCA Ambassador
What does a person need in order to make it through the difficult treatment for any head and neck cancer, or for that matter any cancer?
The obvious things immediately come to mind: ideally, an early diagnosis, good doctors, a solid treatment plan with the right medicine(s), and a lot of stamina. Unfortunately, for the head and neck cancer patient, the early diagnosis is seldom seen, as almost all head and neck cancers are advanced—either Stage III or Stage VI when diagnosed.
The items mentioned above address the physical side of the treatment, but what about the emotional component? While the cancer treatment inflicts a massive physical toll on a person, the emotional aspect is almost always equally challenging.
I believe attitude is easily influenced by the types of support received and by the sources from which it comes. Also, many medical professionals believe the patient’s attitude during treatment will be reflected in the eventual outcome. My ENT, Dr. Andrea McMurphy strongly believes a patient’s support system is essential. During my initial visit when she diagnosed my cancer, Dr. McMurphy told me that a good support group is key to a successful outcome, and she is absolutely correct.
I garnered support and encouragement from many different sources. Among those were, naturally, family and friends; two cancer support groups—the first “broad spectrum” and the second a head-and-neck cancer group which formed well after I finished treatment. (Ideally, I believe it is best if you can be part of a group which is dealing with the same or similar type cancer, but this should not be a prerequisite.)
Other areas I gained support from included fellow head and neck cancer patients, doctors and nurses, and other medical professionals such as speech pathologists. In fact, two speech pathologists, Shannon Amos and Ryann Ennis, formed the Fort Walton Beach, FL., head and neck cancer support group. Shannon and Ryann also gained the physical support of several doctors for our group, including ENT’s and Chemo and Radiation Oncologists. The shared insights and candor these doctors provided were invaluable.
I relied heavily on those first two sources of support.
To elicit the support of friends and family, I initially established e-mail contact with a small number of them. In turn, many of them shared my periodic updates with their friends and this support group grew to about 250 people by the time I finished treatment. The purposes of these updates were to keep them informed of my progress and thoughts, and to encourage them to pray for me.
As an aside, one of the most positive aspects of my intimate sharing was these periodic updates formed the basis for a book about my battle with this Stage VI cancer. The book is available both in e-book and print formats through numerous booksellers, including Amazon, Barnes and Noble, iTunes, etc. Please find more details about my book, HEAD-AND-NECK CANCER KILLS…”FIGHT’S ON!!!” in my featured HNCA survivor story.
When considering whether or not to join a cancer support group, “What can I get out of it?” is most likely the main motivation. Yet, knowingly or unknowingly, each individual has something to contribute to the group. It may be something as simple as being seen as someone who has come through the treatment in good condition or just sharing a coping technique. It can also be something as important as newly-released medical information.
It was in this support group of head and neck cancer patients where I learned two significant pieces of information: (1) Two of the more prominent acid reflux medicines both block the uptake of calcium to the bones, which leads to osteoporosis. I had recently been switched to my second of these reflux medicines when someone in the group mentioned this fact. A subsequent DEXA scan showed me with osteoporosis; and (2) To counter bone loss, there are at least a couple of the more prominent bone replacement drugs routinely prescribed which have the potential side effect of jawbone necrosis. This fact is especially pertinent to the head and neck cancer patient who has been radiated, because we are already susceptible to this side effect from the radiation for about ten years. I may have learned of these developments at my next doctor visit, but I may not have either.
A support group will also help to maintain a balanced perspective. I learned from my experience that, regardless what condition a person is in, you can always find someone who is worse off than you are and you very likely do not have to look very far. There is no delight in that knowledge, but it does help realize that things could always be worse.
Some people dealing with cancer try to “go it alone.” I had a friend who recently passed from colon cancer. He pretty much went through it alone, confiding very little even to his family. In my opinion, carrying the burden alone only adds to the difficulty of the struggle.
Speaking from experience, by opening myself up to people who provided various types of support and through the different means, I received much encouragement, as my book bears out. The expression, “there is strength in numbers” is very true. I believe that is especially true for the cancer patient.
I will be glad to correspond with anyone regarding anything related to my head and neck cancer experience at any time. I may be contacted at firstname.lastname@example.org.