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  Wednesday August 27th, 2014    

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Hats, hugs, and humor: some practical ways to get through chemotherapy (11/10/2004)
By Linda Lewis

(Photo by Patrick Lewis)
     Whether by phone or in person, my big brothers, Steve and Charles, checked up on me on a regular basis. This photo was taken during the summer when my brother Steve stopped by.
Winona Post Composition Editor

I am grateful to Fran Edstrom and Amanda Romaine for the chance to be a part of the articles on breast cancer which appeared in October. This week marks the one-year anniversary of when I found out I had cancer. I thought it might be useful to come up with a list of tips for comfort and coping for women who are experiencing chemotherapy. All I have to go on is what happened to me and what others have told me. Your experience might be quite different. Nevertheless, most of the issues addressed here are fairly common.

ADVICE

Take advice from every source of good information at your disposal. Sift through it and latch on to the pieces that you need.

I asked questions of my surgeon, doctors, nurses, and technicians, the Reach for Recovery volunteer, my mother (who went through breast cancer twice), my neighbor Becky who is a nurse, and Fran Edstrom, both in person and reading her online breast cancer diary at www.winonapost.com. (Note: this article will also be at the Winona Post website.)

I went to the National Cancer Institute website and other web sites and read everything I thought would apply to my situation. The ACS and NCI will send you free booklets if you request them by e-mail or phone. I found the one on eating, food, & nutrition to be very helpful.

The flip side of the advice issue is the outbursts from well meaning but ill-educated people. You might hear some real nutty stuff, along with horror stories about cancer. This is not our mothers' world. Great advances have been made in fighting breast cancer. You are going for the cure.

Tell yourself, "I am a survivor!" Again, and again, and again!

BE PREPARED

Recovering from surgery and chemo side effects can get messy. Gather things together ahead of time if you are able to. It's better than waiting until you're in need. For instance, I went out between breast cancer surgery and the start of chemotherapy and bought four flannel drawstring pajama bottoms and some soft cotton button-front tops to mix and match. Easy on, easy off, easy to wash & dry, soft on the skin.

STOCK UP

Stock up on specialty creams and salves for feet and hands. Your feet and hands, nails, and especially fingertips can become very painful and prone to cracks. Chemotherapy leaves you super vulnerable to infection. You cannot risk infection with even the tiniest cuts so take care of your feet and hands! Point out wounds to your doctor or nurse. Have some antibiotic cream on hand, too, for little wounds.

HANDS

More on sore hands and not risking infection: read Fran's chapter on Thanksgiving dinner! Use rubber gloves if you must wash dishes, clean something, or prepare raw meats for cooking. In my case, my husband took over the use of all the sharp utensils in the kitchen, including washing them. He also took over using the gas burners and oven. Wear oven mitts if you must be around the stove. The second half of my chemo made my hands numb. If this happens to you do not put yourself in a situation where you could get burned by something hot. You won't feel it until it's too late.

MOUTH

Mouth sores can be a common problem. The first time I got one, I took out a pack of Listerine strips and placed a strip right on the sore, letting it stick there until it dissolved. The sore went away within a few hours. Over 6 months I did this each time I sensed an irritation in my mouth. It worked every time. My doctor really liked finding out about this one.

TASTE & SMELL

One of chemo's weirdest side effects is that it affects your sense of taste and your sense of smell. Fran writes about this, too. Her solution of grabbing a bar of soap to put under your nose is great. I kept a bar of Cashmere Bouquet close at hand for those times when my olfactory went berserk.

My creativity alluded me when it came to combating bad tastes. One bite of food would taste good and the next so awful it had to be spit out. When this happened to me I just quit eating and went back to it later or tried a different food. Grape juice went down good for me, as did the "magic broth" that Patrick made for me every time I came home from treatment. It consisted of chicken stock simmered with big slices of fresh ginger and fresh garlic, and garnished with chopped scallion greens. You can precook wide noodles and put a few in it if you wish. This heats up easily, is very tasty (or at least it was to me), and provides saltiness to help prevent dehydration. I could keep it down, too. That was major.

DEHYDRATION

Forcing large amounts of fluids can make you sick to your stomach and thereby lead to dehydration more quickly than frequent but small sips. You need to drink water, juice, pop, salty broth, but don't chug it. You might have to get yourself into the clinic or emergency room as fast as possible to have fluids put back into your system with an IV. The nurse taught me this test: Lie down for 5 minutes. Take your blood pressure and pulse. Stand up for 60 seconds. Take your blood pressure and pulse. If the top number of your BP drops 10 points and your pulse rises, you might be dehydrated.

BALDNESS

Get a cuddly soft stocking hat or something similar to wear to bed. Bald heads get cold! In fact, get 2 of them so you can wash them often. You don't want pimples on your head from an oily hat. Also regarding the bald head, and this comes straight from my infusion nurse, do not shave your head with a razor. This can cause irritations of the follicles that turn to pimples. At our house, we made a ceremony out of trimming back the white wispy "chemo hair" with an electric mustache trimmer. It worked like a charm and did not cut so close to the scalp as to cause irritation.

HATS, HUGS & HUMOR

Go by the three Hs: hats, hugs, and humor. Especially humor! I dressed for my chemo treatments as if I were going to a picnic! I already had several soft winter hats. When spring arrived, I bought inexpensive baseball caps to match my shirts. And, wouldn't you know it? As soon as my hair started growing back I found the perfect chemo hat...on the front it said, "Wish you were hair!"

Hugs are wonderful and you will get more than you know. One thing, though, is to keep your distance from people with colds and flu. Explain to them that your resistance to disease is in the dumpster while you have chemotherapy. If anyone at work is sneezing or coughing or sniffling, keep a container of Clorox disinfecting wipes handy and constantly wipe off doorknobs, faucets, toilet handles, telephones, computer keyboards and all other surfaces you must share with the "sickies." Your own hands get disinfected in the process, as well.

SHOES

Wear slip-on shoes such as "mules" to your chemotherapy treatments. You can kick them off when you're in the chair receiving treatment, yet they are easy to slip into for the trips between the recliner and the room down the hall.

INSOMNIA

If you find yourself unable to sleep soundly because of the effects of steroids, you will want a good magazine or book to read, or you could tiptoe downstairs and watch a good video. I polished off the entire trilogy of Lord of the Rings in print, and then watched videos of the same. I also recommend Marx brothers and Ma & Pa Kettle.

Another thing I did was clean closets and drawers. When I knew I would be going through a sleepless phase, I dragged out boxes of photos or old clothes, or the kitchen junk drawer. Throwing out useless items, making a charity donation pile, and organizing the rest gives you a feeling of accomplishment when you are too darn tired to do any of your regular chores. A box or a drawer is a small enough project so you can work on it for 30 minutes and then take a nap!

WRITE IT DOWN

Keep a diary where you can write down everything and anything you want. It's just for you. You can share it later on if you want to. I found this to be really useful when I was feeling blue. It helped me discover my deep down feelings and thoughts and make some sense of it all. It helped me to remember questions to ask the doctor, too.

CRYING

I told everyone, "I cry twice a day whether I need to or not." Having cancer and going through chemotherapy is a big deal. It roughs you up. Go ahead and cry. Let people around you know this is a signal you need a quick back rub or a hug. Let your husband know that your crying is a signal for a really good hug and cuddle, the kind where your head is on his shoulder and he rocks you and says "There, there." Your husband sees you crying and wants to "fix it." Make sure he knows your crying is not about something he has or hasn't done. He is trying not to show it but he's a nervous wreck and scared of what is happening to you. On occasion you will turn the tables and comfort him.

HUSBANDS & OTHER CAREGIVERS

Say thank you often to your caregiver(s) and give them permission to have time off from looking after you. At the same time, do not be left alone if you need someone there. Your levels of need will fluctuate with your treatment schedule.

If you make notes and pay attention, you will become more equipped to cope as time passes. Your oncologist will do the same and will give you medications that will help. My husband made me a medication chart on his computer and printed it out each week so I could keep track of all the pills.

Keep a list of phone numbers from people who will help. Just concentrate on getting the help and support you need, but remember, people are not mind readers. You have to ask.

DRUGSTORE

Find a pharmacy that offers free delivery and take advantage of it when needed for prescriptions and other comfort items.

BOTTOM LINE

I sincerely hope some of these tips help someone. If you are going through chemo or are about to go through it, remember that you are loved. Ask for whatever help you need. The squeaky wheels really do get the grease. Show this article to your family and friends. Here are some key words for them: Prayers. Massage. Pedicures. Lotion on the back. Cuddling. Humor. Remember also that it is just a matter of time and you will be through with it. You are doing it to increase your chances of not having a reoccurrence of cancer, or to shrink and control existing tumors. Bottom line is you are doing it to prolong your life! Throw your hat in the air and yell, "Huzzah! I'm alive!" 

 

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