Susan Grant’s husband of 20 years, who had always been the rock that steadied their relationship, was now the one who needed constant attention and support. In addition, he was self-employed and did not have health insurance.
He then got the diagnosis that would change their lives – Stage IV Throat Cancer, technically called Squamous Cell Carcinoma in his throat.
She had to jump right in, take the reins, and learn everything she needed to know to help her husband successfully navigate the challenging and often frightening world of throat cancer. They went through chemotherapy along with a grueling schedule of radiation treatments involving intensive 20 minute sessions five days a week for seven weeks. He not only survived, but they declared him to be cured.
She couldn’t find a book that either prepared her or guided her through the trials and tribulations they went through, so Susan decided to write one. She hopes other people will have an easier time.
Here is her advice.
And don’t let yourself get swept up in the chaotic rush to the medical altar. Before treatment begins, take time to ask questions and get educated about what to expect. There’s lots of great information available from your medical team and from professional organizations and caregivers who have “been there.” You’ll be dealing with things you’ve never dealt with before, so taking the time to get organized and making plans for how you’ll get through the next few months is essential. Consider this your personal trip to the moon!
ASK FOR HELP!
You’ll need help with all kinds of daily activities, including transportation to and from doctor appointments. No – the patient should not be driving. REALLY. Some of those magic drugs they’ll be given will most definitely register as a DUI if they get pulled over. Ask for help from those who are happy to pitch in – and don’t bother asking for help from people who are not emotionally supportive. If you need advice, encouragement, and emotional support, there are organizations that will match you with a caregiver who is already been through this ordeal. Whatever you need, help is available. Just ask!
BECOME AN EXPERT ON A NEW WAY OF EATING.
In general, Head and Neck Cancer patients typically have challenges with chewing and swallowing, as the treatments to cure this disease can leave the mouth and throat raw and in serious pain. Make it easier for the patient to eat by pureeing healthy, nutritious meals like soups, smoothies, and silky desserts. Investing in a great blender and/or smoothie maker can make all the difference in the world. To get the best nutrition, just “shake shake shake”!
BECOME AN EXPERT ON INCREASING, NOT LIMITING CALORIES.
This is especially difficult for women caregivers who are accustomed to cutting calories to lose weight. Head and Neck Cancer patients may need to eat one and a half to two times their normal caloric intake simply to keep from losing weight. This can be daunting. After all, just how much chocolate cake can a person eat in one day? (just kidding!). Sneaking in an extra 100 calories here in the form of carbs and fats is relatively easy and can actually add up fast. Simple ways to do this include: drinking glasses of apple juice; adding 1 Tbsp of olive, sesame, or coconut oil to a meal; or adding finely ground nuts and seeds to soups, smoothies, and desserts. I used to kid my husband by saying, “Don’t go to a Weight Watcher’s meeting – they’ll chase you out with a rolling pin!” If there was ever a great time to eat ice cream, this is it!
DISCOVER YOUR INNER NURSE.
Dealing with Head and Neck Cancer symptoms and side effects can be messy business. You may need to change bandages, apply ointments and salves, and deal with ooey-gooey things. You may need to stock up on all kinds of tools and supplies you never dreamed you’d need. If you’re not the nursing type, this can be a challenge. So if this is hard for you to do, pretend you’re an actress playing a nurse on the front lines in a romantic epic like “Doctor Zhivago.” And add a little background music to help you get the job done, like “Lara’s theme” or the theme from “Rocky.”
DON’T UNDERESTIMATE THE POWER OF “MOMMY MEDICINE”.
A term I invented to describe the care that takes place at home. You know what looks normal or feels “off” with your loved one. Trust your instincts and your power of observation, especially if something doesn’t seem right. Speak up and be an advocate for the patient. If your loved one is undergoing chemo and radiation, as treatments progress, the patient can get more tired and foggy in their thinking. This is the time they’ll need you to pay attention to details, and give updates and alerts to your doctor and medical team. So don’t underestimate the importance of your role at this time. You just might be the one who notices a sign or symptom that can save your loved one’s life!
FIND THE INNER STRENGTH AND CHEERLEADER YOU NEVER KNEW YOU HAD – AND THEN SOME.
Head and Neck cancer treatments can be grueling and you will need to “keep it together” at times when you just might feel like falling apart. Waiting rooms at clinics and hospitals can be filled with people who are sad, scared, and suffering. Finding ways to bring joy into your daily regime can do wonders for you and help others, as well. Get creative. For instance, we got permission to bring our two, very gregarious and sweet little dogs to the waiting room each day. They were a great comfort to us and they cheered everyone else up, as well.
SCRUTINIZE YOUR MEDICAL BILLS.
Don’t assume every invoice sent to you is correct. Computers and people make mistakes all the time. Some bills may not be current or may have already been paid. Also, it’s absolutely O.K.. to negotiate your medical bills. We discovered quite by accident that discounts are often available for paying in full – with anywhere from 10% to 35% taken off the bill. By asking questions and negotiating our bills, we literally saved over $3000 dollars. Definitely worth the effort!
DO WHAT YOU CAN TO TAKE CARE OF YOURSELF AND DE-STRESS YOUR LIFE.
Reducing or eliminating everyday sources of stress can do wonders for you and might just become a healthy, new habit to boot. Turn off the nightly news and violent or upsetting movies and TV shows. Resist the temptation to start or get sucked into arguments at home or at work over trivial things. To keep from being drained by needy friends or relatives, consider signing up with a free, online service such as Caring Bridge. It’s a blog format that is an easy way to keep friends and family updated on your progress as well as any special needs (like starting a medical fund to help pay bills). And it’s heartwarming to see how many people are willing to offer you love and support. Try it!
SEE THE HUMOR AND HAVE A GOOD LAUGH EACH DAY.
I know it might sound odd, but seeing the humor in your situation might be just the ticket you need to get through this challenging time. Ask yourself, “If this is a comedy and not a tragedy, what characters, props, and events do I find funny?” Write about it, sing about it, or give it a new name. We renamed my husband’s Lorazapan pills “Marzipan Pills” and when I told him he looked “all puffed out like an Amazonian frog”, he would come up to me, look me straight in the eyes and say, “Ribbitt.” Know that “this too shall pass” – and this thing called cancer won’t go on forever. If you look for a little humor here and there, you just might discover you’re funnier than you think!
While Susan Grant pulls no punches when she discusses the realities of being a caregiver, her sense of humor, blatant honesty and stalwart strength shines chapter after chapter. She offers up the bottom line telling exactly what not to do and when, and when to do what and how.