By now, most of us have heard the staggering statistics regarding breast cancer. The stats are so alarming that for the minority of you who don't know and for the rest of us who do, they bear repeating. One out of every eight women will be diagnosed with breast cancer at some time in their lives. Men also get breast cancer but at a much lower rate. This means that nearly everyone, at some point, will personally know someone who is battling this disease.
If someone you know and love has just received this devastating news, he or she is probably still in shock and cannot process any more information. In fact, as many survivors will tell you, once they heard the doctor say "it's cancer", everything else they heard was "blah, blah, blah." The initial news is so overwhelming that many people do not recall whatever else is being said at that time. That is why it is helpful to have a caregiver. Anyone may become a caregiver as long as you are willing to become a close ally for the journey ahead.
When my sister was first diagnosed, we were bombarded with the initial "week from hell." The following days spun like the Tasmanian devil with doctors' appointments, tests, and more tests. I suddenly became the primary caregiver, secretary, driver and cheerleader. I was glad to provide all of the practical stuff. But, after the initial flurry of activity subsided, we settled into a scary lull of waiting for test results. I didn't know what to do. I kept thinking "What can I do to help my sister now?" I could hardly bear to sit and do nothing. I didn't know where to turn.
If you are a caregiver now or will be in the future, I'd like to suggest the following ten practical tips. These are things that I wish I had been told I could do following my sister's initial diagnosis.
- Assign the drivers. At the start there will be many back to back doctor visits and procedures. You can offer to drive the patient to appointments during this emotionally overwhelming time. There will be occasions when the patient may not be able do drive. For instance, if the insertion of a medical port catheter is required ("port surgery"), the patient will be sedated and it is mandatory that a driver take the patient home.
- Obtain pharmacy data. You can help by finding the name, address and phone number of the pharmacy where the patient plans to pick up their prescriptions. Many treatment facilities require this information on their forms.
- Know the co-pays. During this stressful time, it's easy to forget that many insurance plans require co-payment for doctor visits. As fees can vary, you can save a lot of time and aggravation by calling ahead and getting this information prior to each visit.
- Get a health care proxy. Ask if the patient has one. If not, it may be helpful to designate someone to make medical decisions on his or her behalf if they are unable to do so. For instance, if he or she is getting the port surgery it will be required. This will apply to other surgeries as well. You may call the facility ahead of time and ask if they have their own form. Many do and you can pick this up and complete it prior to surgery.
- Do the research. Here is where you can really make a difference. You can help the patient screen all of the available information regarding their diagnosis. There is a ton of information out there. Just be sure when you are on the Internet that you are on reputable sites. The web sites that end in ".edu, .org or .gov" are from educational, non-profit or governmental institutions. These are legitimate sites and their information can usually be trusted. The sites that end in ".com" are business sites and may include companies who are strictly interested in a profit. Information on these sites may be biased in favor of the companies who sponsor them. (See below: "Breast Cancer Websites.")
- Be the note taker. This can be really helpful to the patient as it is often difficult for anyone to recall all of the information given at every appointment. By going along and taking notes, you can help the patient remember all that was discussed. Also, you may want to jot down questions ahead of time that the patient wants answered during visits to the doctor.
- Buy a wig (or two). Not everyone loses their hair during treatment. But some chemotherapy typically causes hair loss. It may be less traumatic for the patient to avoid this and get a wig before that happens. If you have no idea where to go in your area, most local hair salons will be able to direct you as to where you may go. The patient may also consider purchasing a wig online. The synthetic ones have come a long, long way and are great. My sister bought two beautiful wigs and the numerous compliments she lifted her spirits immensely. (See below: "Shopping for wigs online.") Of course, some patients may just prefer to wear a scarf or hat.
- Try popsicles (or juice bars and ice chips). Some patients suffer from mouth sores during chemotherapy. Many patients receiving chemotherapy told my sister that they sucked on popsicles, juice bars and/or ice chips to help alleviate any discomfort and to stay hydrated. (It's also a nice way to share treats and pass the time during treatment.) Of course patients should check first with their doctor to see if this will be okay for them.
- Make chemo visits special. Not all patients need chemotherapy. But for those who choose it, most do not look forward to their treatment. As a caregiver, you can help to make these visits less stressful. At each of my sister's sessions, I brought baked goods to share with the nurses and other patients. Luckily for us, my sister never got ill during or after her session. So, after every treatment, we followed chemotherapy with some "retail therapy". Shopping was a great diversion and it didn't matter if we bought anything. Then, when my sister got home, I always had a little gift like lotion or a candle waiting for her. I know she appreciated it.
- Listen. (Avoid the "pep talk") Last, but certainly not least, be a good listener. This is probably the most important thing you can do. Be the sounding board for all of the emotions the patient may have. These may include anxiety, anger, sadness and depression. Be sure to actively listen. Do not interrupt, offer your opinion or inject your comments on what you would do unless you are asked. Right now, it's all about the patient. Whether or not you agree with what he or she feels or their decisions, simply being there and listening is the best therapy of all. Do not feel the need to give 'pep talks". But try and sprinkle in some laughter when the time is right. A humorous joke or story will help ease the tension for everyone.
- American Cancer Society (www.cancer.org)
- American Society of Clinical Oncology (www.cancer.net)
- Breast Cancer information (www.breastcancer.org)
- Breast Cancer Research Foundation (www.bcrfcure.org)
- Cancer Care (www.cancercare.org)
- Living Beyond Breast Cancer (www.lbbc.org)
- National Cancer Institute (www.cancer.gov)
- Susan G. Komen Foundation (www.komen.org)
- The American Breast Cancer Foundation (www.abcf.org)
- Chemo Savvy (www.chemosavvy.com)
- Hair Sisters (www.hairsisters.com)
- Headcovers Unlimited (www.headcovers.com)
- Designer Wigs (www.hairuwear.com)
- Tender Loving Care (TLC), American Cancer Society (www.tlcdirect.org)
- The Wig Experts (www.wigs.com)
A diagnosis of breast cancer is scary. So much about it is out of anyone's control. It's understandable for everyone to feel anxious and helpless. But, as a caregiver, there are many things you can do to make the journey a little easier for yourself and the one you love. It has been an honor and a privilege for me to care for my sister during her journey. I hope it will be the same for you, too.
Breast Cancer websites
There is an extensive amount of websites that deal with breast cancer. The following list is a small sample of reputable sites to get you started in your search for additional information.
Shopping for wigs online
The following web sites may be helpful in making your selection. Wigs have come a long way in recent years. With a variety of styles and types to choose from even the most discriminating shopper can find something to suit her taste. Here is a sample of some of the available sites.
Marjorie Faes is a freelance writer from East Amherst, New York. She helped her sister deal with breast cancer.