I was recently interviewed by Kim Thilbodeaux, President and CEO of the Cancer Support Community. The interview will air Tuesday, August 2, 1 p.m. PST/4 p.m. EST on VoiceAmerica’s show “Frankly Speaking About Cancer.” The topic is Healing Nutrition: What Patients & Caregivers Should Know About Eating Well Through Cancer. The guests, in addition to me are: Susan Bratton, Founder and CEO, Meals to Heal LLC, a provider of nutritional information, counseling and fresh meals for cancer patients and their caregivers, and Dr. Katherine Chauncey, PhD, R.D., Director of the West Texas Cancer Survivors Network and Professor of Clinical Family Practice at Texas Tech School of Medicine.
Here is the link to the show: http://www.voiceamerica.com/Show/965
We discussed at length the importance of addressing a cancer patient’s changing nutritional needs and the challenges of keeping a cancer patient’s diet nutritionally balanced. Changes in appetite, in the patient’s sense of taste and smell, food sensitivities, drug and food combinations to avoid and other important aspects of maintaining a sensible and healthful diet plan are all factors to consider. And that is just the tip of the iceberg.
We talked about the importance of having a patient undergo nutritional counseling before, during and after treatment. I address this in last week’s blog post.
Then the topic switched the patient’s caregiver: the spouse, parent, sibling, daughter, son or friend, whose task it is to take care of the patient. While everyone focuses on the nutritional needs and diet of the patient, few may realize the importance of the caregiver’s diet during the treatment period. Often the caregiver, facing the time constraints and emotional stress of caring for a loved one, often neglects his or her own diet. The caregiver can gain or lose excessive weight, become over tired and sick. I have seen this happen in my own family. My grandmother died of a massive heart attack while caring for her husband, my grandfather, as he fought prostate cancer. I think the stress, lack of sleep and proper diet all were contributing factors to her death. She did not take care of herself; she was focused on just taking care of my grandfather.
What I learned and want to share is this: Patients and caregivers alike should both seek nutritional counseling together before, during and after treatment. The caregiver needs to stay healthy and focus on his or her diet plan, also. And patients and caregivers needs to get a sufficient amount of exercise. Movement is healthy. Even at my height of exhaustion during chemotherapy I made myself go to the gym to work out of a reclining bicycle at a pace I could tolerate. David and I took walks. I stretched and did simple floor exercises. Exercise bolstered my energy and my emotions. I felt better.
Many caregivers forgo their own needs to care for the patient and this is not a good move. The caregiver is often neglectful or neglected when it comes to his or her well-being. I witnessed this with my husband David, whose weight increased from stress and from thinking less about what he ate and more about what I would or could eat or if I could tolerate my next round of treatment. I saw it in my mother when she was caring for my dying father. Food was spoiling in the refrigerator. She ate prepared salads over the sink or snacked on sugary foods. Her weight slid, and she looked tired. I told her she needed to eat more fresh fruit and vegetables she said she didn’t like them….just like a kid! I told her to rest, to be a little more selfish; she would have none of it. My father’s needs were more important than her own. Here was a woman faced with a dying husband and an only daughter newly diagnosed with breast cancer. Two loved ones needed her, and she was selfless to a fault. I think it is OK to be a little selfish when it comes to taking care of your own health.
Post treatment I have taken a more pro-active approach to managing my diet and what David and I eat for meals (OK, David, if you are reading this post I know you are rolling your eyes about right now.) Let me be honest: I still do not cook; David does. I assemble great salads, fresh healthy snacks and healthy sandwiches and desserts. But when we shop for food and plan our meals, we are both more conscientious about what we put on our plate: 2/3 vegetables or grains and 1/3 protein. We eat smaller portions and fewer seconds (or thirds!). And this was before the new “pie chart” guidelines put out by the U.S. government.
And we move more. There are published reports that confirm exercise is as important as diet is to combat disease. So, we take long walks in the evening rather than going out for expensive dinners; we make a point of being more physically active and nutritionally smart. David has since lost the pounds he packed on and I have maintained the weight I needed to lose to stay in fighting shape to avoid a recurrence.
While everyone focuses on the patient’s needs, fewer may focus on the caregiver’s needs. It is the caregiver who has to stay strong and positive, while facing the fact their loved one is ill. It is the caregiver who has to answer to the cries of the patient asking “Why Me?” or “Am I going to die?” It is the caregiver who changes the bandages, the bedding and the bedpan. It is the caregiver who helps administer the shots, makes sure the medications are taken properly and sees to it the patient has enough hydration, food and blankets. It is the caregiver who is the voice of reassurance there will be a better day tomorrow and that person will be there for you.
My caregiver, my husband, accompanied me to each doctor’s appointment, changed my drains post mastectomy, took me to chemotherapy and sat up after each chemo to watch and make sure I was OK. He was the person who watched me collapse like a rag doll from an adverse reaction to my fifth chemotherapy session and who took me home and tucked my into bed after I recovered. He ignored my rage and deflected my epithets when the steroids wore off after each session leaving my nerves raw, my brain muddled and my body in pain. He made me a tub of “special healing broth” from a slab of beef and then quietly tossed it out when I told him it stank like cow sweat and refused to drink it. He endured my mood changes, hormone fluctuations, steroid slumps and changes in palate. He shaved my head when the clumps of hair coming out became too much and grew his own hair as a form of protest against cancer, cutting it only after mine started to finally grow back in.
One of the nicest things a dear friend of mine did was to give David at the start of our cancer journey together a letter of support, a copy of the book Stand By Her by John Anderson which was written to help men who are caring for women fighting breast cancer, and a copy of The Cancer Free Kitchen Cookbook. She understood what he would be going through; her husband was her caregiver when she underwent breast cancer treatment.
Being a caregiver can be a lonely experience. I have spoken to several women who have been caregivers for their ill husbands. They all spoke of having to withdraw from their normal life to focus on their loved ones, the lack of time to take care of everyday chores. You try and keep things normal but, in the case of a serious illness or injury, everything is in a new state of normal.
So, when you send the patient a little “care package” make sure to give something to the caregiver: gift certificate for massages, groceries, exercise classes; bring fresh prepared foods; offer to do the shopping, run the errands, arrange for a cleaning service; sit with the loved one so the caregiver can get out. Actions speak louder than material gifts. Often what the caregiver needs – as much as the patient- is time and encouragement. Give companionship. Lend a hand; offer an ear; be a sounding board.
In the end you want the caregiver to be around for long run just as much as the patient.
