COMMENTS FROM A COLON CANCER PATIENT Ann Reynolds July, 2014

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1 COMMENTS FROM A COLON CANCER PATIENT Ann Reynolds July, 2014 Introduction It s a shock to hear you have colon cancer. You usually don t have enough time to deal with the news before you re told when you should begin chemotherapy. I went through that scenario a few years ago and remember how hard it was to deal with all the information I was given. At the same time, there was so much to process that I didn t think to ask about many of the details. I m not a doctor. My purpose in writing this is to provide some non medical advice that may help you as you go through your treatment or help you support someone you love and care about during this time. The medical team Your doctor and his or her staff will talk with you about treatment, including the medicines you will be given as well as how and when you will have treatment. I assume you will be having chemotherapy every other week for 6 months and after each session you will go home with a pump that you will wear for 46 hours. That is the treatment I had. Even if the protocol is changed, some of the information in here may be helpful. Medical information The doctor or an assistant will meet with you and give you a number of printed pages about the medicines you will be

2 getting. They re technical; but read them and save them to read again. Like so many documents, we often don t realize what s important until we have a question later. Do read them in the beginning, though, to make sure they re consistent. For example, two documents for different drugs told me to do exactly the opposite if I had diarrhea. That s when you need to talk to your medical team. Take care of yourself You have to put yourself first so that you have a good outcome. Look at your commitments and make your life as simple as possible. Do tell your family, neighbors and friends about your treatment schedule. Avoid obligations to be at a certain place at a certain time---for example a volunteer job you may have done for years. You need to be able to give yourself the freedom to stay home and rest. Avoid situations where you ll be around people who are sick and young children other than your family. Before you begin treatment Go to the dentist before you begin treatment if you will be due soon for work or a checkup. Think about any major decisions that you shouldn t put off for 9 months to a year. Your ability to reason clearly is going to be clouded by treatment. The worst part is that you won t realize your mind is not as sharp as usual; so you should go ahead and act now. Your port The port is used to put medicine in your body. Some may be 2

3 difficult to use and require extra attention. It s hard to deal with any delay when you re ready for a treatment; but it isn t unusual and shouldn t upset you. The office may give you an appointment to have your port flushed to make it work better. I ve been told that it should be flushed every month to 6 weeks if it s not being used to make sure it stays open. Treatments You ll be shown where you ll receive your treatments. Every place is different; but you will be there for several hours. The first time usually is the longest. You may want a small blanket in case you get cold. Pack a small bag it can be a paper bag from the grocery store and put some things in it that will help pass the time. I especially enjoyed listening to music with earphones. It s good to have snacks in your bag or even a sack lunch if you will be there over mealtime. Some places have food available and you also might be able to order delivery. If friends volunteer to come by with lunch, do accept if you feel up to it. Take a book or some simple puzzle books if you enjoy them. It s good to drink water. Even though water probably will be available, it s nice to have it in your bag in case you don t feel like getting up. Blood Even if you ve been reluctant to give blood I the past, you should get more comfortable with the procedure. They take blood before every session to make sure you re able to have treatment. I found I had much less bruising if I applied pressure on the gauze they put over the area where they drew blood. Hold it firmly about 2 minutes. 3

4 Upset Stomach We ve all heard about stomach problems with chemotherapy; but they now give anti-nausea medicine as part of your treatment. Hopefully, you will have little or no discomfort. Try candied ginger. If it works for you, put some in your bag. Others try chewing gum or lemon drops. Do what works for you. You may discover something that helps you. Share that information with others as I m trying to do here. I was told liquid Immodium works much faster than pills if you have diarrhea. Mouth discomfort You might experience a sore mouth or tongue. Some have that after the first treatment. Call your doctor s office if you haven t been given information about what to do. I don t think the sore mouth will come back after it clears up, Seek help Whenever you feel pain or something unusual, call your doctor s office. Everyone reacts a little differently; but the office probably has heard of your problem or something similar and has a solution. Cold You may feel cold in the treatment room; but there are other ways you may be sensitive to cold. Your fingers will react to cold. Avoid handling ice and you should use a mitt or dishtowel to take things out of the refrigerator. 4

5 You ll also react to cold liquids. If you go to a restaurant and ask for plain water, tea, etc., with no ice, it s amazing how often it still comes cold; so I recommend you carry your own bottle of room temperature water or other liquid with you. Nutrition There are many sources to find out about nutrition; but my advice is to make sure you consume enough calories. If you re underweight before you begin treatment, indulge yourself and have that dessert you usually avoid. You re going to lose some weight and it s better to know you have a little extra to spare! There will be times you have no appetite. Ensure and other supplements may taste good when nothing else does. Be prepared that you may eat something that tastes so delicious in the morning that you decide to have it again for lunch and then you don t like the taste at all. Because you need to eat, keep a variety of small servings in the freezer if you can. I found some things that I liked even though I usually don t eat a lot of them: pot pies, pizza, and pancakes and sausage with a lot of syrup. Bad taste Lemon drops as well as the candied ginger and gum help if you have a bad taste in your mouth. I frequently had a bad taste in my mouth the day the pump was removed. Hair People usually don t lose their hair during chemotherapy for colon cancer; but it will get thinner gradually. If your 5

6 treatments are during cold weather, you may want to wear a cap when you go out. Weather Your body temperature is going to change and you may feel colder or hotter than usual. Humid hot weather made me feel not only very hot but itchy. That problem disappeared when I stayed inside in the air conditioning. Skin Your skin may feel very dry. It s possible that your fingers will dry and crack. Use lots of lotion. There s a long handled gadget you can use to apply lotion to your back. Mine came from Vermont Country Store. Most patients will have some neuropathy in their hands and/or their feet. It interferes with your ability to feel with your hands and your ability to pick things up. If you have it in your feet, you will feel unsteady as your walk and may have difficulty standing. The good news is you can expect it go away, hopefully completely; but it may take several months after you end treatment. Exercise Do make yourself move around. Walking around your house will improve your strength even if you are inside. Create a route that will take you from the living room, to the bedroom, around the kitchen, etc. and do it several times a day except on the days you just don t feel like it. Stand at the sink on one foot for a while. Also try walking backwards. All these moves will 6

7 make you stronger and feel better. If you re up to it, walk at a mall. Avoid getting too hot or too cold. Don t It sounds as if it would be a good time to stand up and go to the bathroom or get some water when one bag of chemicals is finished and you re waiting for the next one; but it isn t. Don t get up from your chair. The pump at home You don t have to keep your pump on your shoulder all the time; but I did during the day because I was afraid I would try to walk off without it. When you go to bed, you can put it by your side. Hold your hand over your port when you turn over. Warning You will have an appointment when your pump is to be removed. The timing should be correct. You want to be there so you will not be sitting with an empty pump. If it should go off when it isn t scheduled, call the doctor s office or if it s closed go to an emergency room to avoid getting a blood clot. Red splotches on your face You may get red splotches on your face soon after you begin chemotherapy. They re in areas where your skin has been damaged by the sun. I had a large grey mark on my face and it went away. That s one of the few benefits of treatment. The marks will go away. Mine returned after about 5 years. Everyone is unique 7

8 Each person reacts a little differently to treatment. Be aware how you are feeling. The medicine may need to be tweaked to make it better for you and some of the chemicals may not be available. The doctor and staff know how to personalize your care; but you need to tell them know how you are doing. A treatment may be delayed to give you time to get stronger. Your schedule You probably will feel O.K. on the day of your treatment and while you have the pump on. I had my hardest day when they removed the pump. That s a good time to take an afternoon nap or plan to just take it easy. The next 2 days will be hard, too; but you should begin to feel better after then. Hopefully you will feel pretty good during your in between week; so that s the best time to plan to get out and be with people or run errands. Colostomy A colostomy may be part of your cancer surgery. I have not dealt with that since a colostomy can be in several different areas with different consequences. Do insist on bags that are self venting and always keep replacement materials with you. I could not detect any specific effects due to chemotherapy. Be careful It s not surprising that your bones will be weaker at the end of treatment. Give yourself at least 9 months or a year before engaging in any activities that could result in a fall or other injury. Doctors may tell you to go out and resume your old life; but you are vulnerable. I fell playing tennis about 3 months 8

9 after treatment ended and broke my hip in a very gentle fall. Protect yourself. Conclusion I hope these comments will be helpful. Please add any tips that make your treatment easier and share information with others. Chemotherapy is to be endured; but it is doable. Expect to have less energy and to feel weaker as the treatments continue. You ll regain weight, your hair will grow back, and you ll get more energy. Your mind will clear, too; but allow yourself several months and be patient. References The National Institute of Health (NIH) website senior health/colon cancer and many other internet sites are full of information. Do read the prognosis on the NIH site which will assure you that colon cancer can be successfully treated and has a good recovery rate. 9