One Family’s Tips and Experiences
The cancer experience is often described as a journey, and many people appreciate learning from others along the way. This article is a list of tips compiled by the wife of a recent guest being treated for cancer. It contains 14 tips and experiences from his throat cancer journey, along with those of their cancer support group friends, various medical personnel, and cancer survivors, patients and caregivers that they’ve met over the last 7 years. Everyone is different and these tips will not work for everyone. This should not be considered medical advice.
Build Your Support Village:
- Find a support group. Our Head and Neck Cancer Support Group has been a Godsend for both of us. No one doctor can provide all the information you may need to know. Having a few other people to share experiences, symptoms and victories with made a huge difference.
Try to keep or start new traditions with your family/friends while you are going through treatment. For years my husband and I have spent summer weekend mornings having coffee on our front porch. We stopped doing it for a while, but then started again and things felt just a bit more normal. For a long time he had to pour the coffee into his feeding tube.
- See if your local hospital has free services and classes. Our hospital has a Cancer Wellness Center that offers free services and classes to all current cancer patients and survivors. They have support groups, free massage, exercise and cooking classes. You don’t have to get treated at that hospital to use the services. Check with your local hospital for services.
- Stay connected. We allowed very few visitors during my husband’s treatment because his blood counts got so low. Our neighbor and friend/cleaning person were the only two that visited. I sent a weekly email to family and friends to let everyone know how my husband was doing. This kept down the phone calls while he was feeling bad and couldn’t speak. The replies we got meant so much to us.
- Protect your skin from the sun where it was radiated. Also, during radiation, my husband was only allowed to put aloe and hydrocortisone on his skin (each facility is different, and usually specifies which lotions). After every radiation treatment, he’d apply aloe before he left the facility, plus he would swallow at least one sip of water. After radiation ended, every night for probably a year I applied hydrocortisone cream to any itchy areas, plus Lubriderm from his collar bone up to his ear lobes. His radiation oncologist is amazed at the wonderful condition of his skin. My husband’s skin never got as bad as our support group leader’s photos.
- Stock up on over-the-counter medicines. Our chemo doctor sold ‘chemo packs’ for $5 each. They were plastic bags with small bottles of Tylenol, Benadryl, Milk of Magnesia, stool softener, Immodium, Pepto Bismol, etc.
- Reposition your chemo pump. If you must wear a chemo pump with a shoulder strap for multiple days at a time, it can rub your neck raw. My husband finally hooked his up so it was wrapped around his waist. It still took over a year for the area to heal.
Buy a box of individually wrapped surgical masks in case your white blood counts are low and you have to be around lots of people, like at a doctor’s office. We kept one in my purse, one in the car, etc. They sell them at most drug stores.
- Keep weight up: Ensure and smoothies helped keep his weight up (while he could swallow).
- Stay warm: I bought him an electric throw to use when he spent days resting on the couch. For months he could not get warm, even through the hot summer.
- Buy a small wire-bound notebook. Before each doctor visit, put the doctor’s name and date at the top of the next blank page. Write down any questions you have. Have someone take notes at each doctor visit. You probably won’t remember it all unless you write it down.
Log your visits and bills. Even before the cancer, I’ve kept a yearly log of all doctor visits, how much we paid at time of visit and how much we paid later. This prevents double billing (happened a few times), and helps when you need to know when you last saw a specific doctor. It also helps a lot when you are filing your taxes. If you can itemize medical expenses, you also get to claim mileage to and from any medical-related visit.
- Keep a daily log. My husband kept a daily log – which meds he was supposed to take that day, what time he took his meds, vital signs, food consumed, how many boxes of formula, symptoms, etc. He also logged bowel movements to know when he needed to take stronger meds for constipation. You cannot allow yourself to get constipated. He also listed any new symptoms or side effects and shared this information with his doctor as needed.
Finally, consider it your full-time job to take care of yourself while you’re going through treatment. Don’t worry about anything else that you are not able to take care of.
Do you have other tips to add? Email us at firstname.lastname@example.org