How to survive cancer treatment!
When I was teaching psychology and began a new unit, I always liked to begin with an introductory activity. I hope the students enjoyed them as much as I did! Prior to the unit on stress, I had the students stand up individually and sing. Wow! What a great stress creator! Sometimes it evolved into a talent show and even, on occasion, a dance-off! Some students became angry and refused to participate – I respected that. It was an evil activity, which is why I loved it! When we were discussing self-esteem, I’d begin showing pictures with sayings that were the opposite of positive uplifting expressions, as shown in the image. Yes, evil again!
I don’t believe I made a mistake and gave myself stage 4 pancreatic cancer – Thank God! However, I do believe it has allowed me to become a mini “Pro” in dealing with a serious medical issue and the medical profession. I have had to figure out a lot on my own, and through discussions with others, so I do feel I can be a ‘warning’ or guide for others.
The first year I was diagnosed I heard numerous stories about the amazing survival of others with stage 4 pancreatic cancer and other horrific diseases. However, I believed my own Dr. Death, who said I had a fatal disease and most people don’t last a year; so the stories of survival were difficult to hear sometimes. I felt an angry jealousy towards those who won the prize of survival. Now, that I am still alive, I feel I have become the symbol of survival in the stories people tell to other ill people. I understand that my survival might also be difficult for others to hear – happy for me, sad for themselves. It can make you feel like an evil person to be jealous of someone’s amazing survival.
So, as a survival guide, I thought I would share some “Pro tips” to help those dealing with the medical profession.
-It’s the patient’s job to follow up on everything the physician says he/she is going to do with the follow-up plans. Did the doc make the referral to the specialist? Did the prescription get sent? Did the office order that test? You are one patient and the doc has hundreds! You are your best advocate and it’s your job now.
-Stay off the Internet.
-When the doctor says, we’ll “just” do this surgical procedure and it will help with the pain, they make it sound so easy. It’s never, NEVER easy.
-Even though they did give me a “Welcome to Cancer” binder, which does have lots of good information, they forget to tell you some important small details. For instance there is a cream, called Emla Cream, that you can spread on the skin over your port that numbs it before they insert the rather fierce-looking needle. I apply the cream an hour before the lab or procedure, and cover it with a saran square taped with athletic tape. For some it works – like me! I also remind the technician and nurse to hold the port tight because it slips and skin held tight doesn’t hurt as much when the needle is inserted. You need to wear button shirts for procedures so they get easily reach your port.
-Reread that binder every once in a while because the information is overwhelming and things change in your medical life so you pick up new pieces of knowledge each time you read it. But, I try not to read much about the side effects of chemo. Who wants to know all that?
-Lysine, an over-the-counter amino acid gets rid of mouth sores (even if you don’t have chemo).
-Thanks to online medical charts, you have access to test results before your meeting with the doctor. While it’s important to read it before appointments so you can prepare questions for the doctor, think twice about reading it. I’d always misinterpret the information and recheck my will every time I read the report, consulting with my equally alarmed sister, because we are always sure the results indicated that I was a goner.
-Check with pharmacists with every new medication so you really understand both the medication, side effects, how to deal with the side effects and interactions with foods and other meds. They have so much more information than the medical office. However, the medical office also knows impact details the pharmacists don’t realize are significant with your cancer. I liked the hospital’s pharmacy in the Cancer Center. They know a lot. Plus, the regular, over-the-counter (otc) meds are super cheap there.
-The doctor’s nurse, nurse practitioner, or physician’s assistant know a LOT of practical information and they have much more time to spend answering your questions.
-The nurses in the chemo day hospital and chemo urgent care know a LOT and have good suggestions. But, they see so many different cancers, you have to be a little careful and double check what they say with your doctor for your particular cancer. They were the ones who told me to take claritin before, and for several days after, my neulasta shot. It can help reduce the pain of bones aches it causes.
-The nurses frequently encouraged and reprimanded me for not taking enough pain and anti-nausea medications. Take the meds! Preventively. They work better that way; the nurses are right. Bring your own meds (pain, anti-diarrhea) to treatment; it’s easier too use your own than have it ordered. Tell the nurses when you take something.
-Walk. It helps with nausea, pain, energy, spirits, appetite and everything. Walk every day even if it’s only one house down and back. It’s magic. In winter I wear every winter article I own for warmth, including my mother’s old mink coat over my own winter coat with several scarves and hats. Once when I stopped to enjoy watching small children playing in the snow, one boy looked at me and said, “You look scary!” I bet I did!
-Eating and drinking can be very hard to do. I appreciate food repulsion experienced by someone who has lived with anorexia. I watch cooking shows (but seriously tired of the yelling chef) and read cooking magazines. I bought all kinds of drinks and foods and used all my fancy drink glasses lined up on the table, each with a different drink to push my drinking.
-Understand your insurance!! Check coverage. Check in-network. Check pre-authorization, copay, coinsurance – what is all this? Recheck. Usually I hit my deductible by mid-January and my out-of-pocket maximum by the end of January. My hospital has a financial navigator for me. They are very helpful.
-Everything breaks in your house when you have cancer.
-It’s okay – be angry, scared, sad, overwhelmed, frustrated, unhappy, cheated. Being positive is overrated.
Just one more thought. There are no words to describe the overwhelming feelings when dealing with cancer, but fortunately there are words for prayers and words for “I love you” from friends and families.
(This blog post is dedicated to my dear friend who was just diagnosed with colon cancer)