Author: sarambarton

I spent many winters doing battle with the squirrels, and every time I sought to thwart them, they found ways to slip past my defenses. What does this have to do with cancer management?

Think about how much energy it takes to wage war with an enemy that can maneuver through tight spaces, can outwit your best efforts, and that can jump long distances. I wasted more time at the window, waiting for the squirrels to arrive, so I could attempt to frighten them away. The truth is that I had little real impact on these rodents with attitude. They still arrived in droves. They still found ways to get the bird seed. I can’t tell you the number of times the feeder poles were bent, the feeders were sent crashing to the ground, and the seed was lost. In the end, the very birds I wanted to feed were the ones who suffered the most. They were frightened away by my squirrel-chasing antics. They lost out when the squirrels took over their feeding ground.

What’s the solution to the squirrel situation? As you can see by the photos, the pole is still bent in the winter snow. The reality is that I had to learn to manage the squirrels in a reasonable way. Oh, don’t get me wrong. They still get the bird seed. They still climb onto the feeders and they try to get as much as they can. But now I have ways to feed the birds that circumvent the squirrels.

I have a squirrel-proof feeder on a nearby tree limb. This is for the birds when the squirrels are taking over the pole feeders. The birds don’t like this feeder as much, but it allows them to still feed when they are blocked on the feeder. I also have a thistle feeder for the little song birds, something the squirrels aren’t interested in accessing. One of the pole feeders is easy for the squirrels to get at, and they do. They shake the seed onto the ground below and have their little feasts. And then there is the “squirrel cage” feeder, designed to prevent them from accessing the seed. Does it work? Sometimes. As long as the squirrels can get some seed from the easy feeder, however, they tend to leave this one alone.

You might not think so, but I have actually cut down the amount of seed I use for the birds and squirrels. That’s what squirrel management can do. Am I admitting defeat by allowing them to get at some of the seed? Not really. I am acknowledging that I cannot control all of them, but I can control the amount of energy I expend and how I expend it.

Cancer management is a lot like that. Should you waste your time putting all of your energy and attention on curing the cancer? Or should you use the time to direct the energy and attention to the life you and your loved one want to live? It’s really about quality of life, more than quantity. It’s about conserving resources and improving the ways to use the resources.

In cancer treatment, there are things you can control and should control. But there are also things that will happen over which you have little control. Changing your focus allows you to meet the important needs of cancer patients in meaningful ways. When you direct your energy towards using the life you and your loved one have to pursue good times, you lessen the direct impact of bad times. You accept that bad things can happen to good people, so you look for the opportunities to find the goodness that’s available.

The truth is we can’t always change our circumstances, but we can change how we live within those confines, and in doing so, we take control over the quality of the lives we live. It’s our decision, not cancer’s.

A lot of people categorize skin cancer as a less serious disease than many other types of cancer, and it usually is, unless it is a deadly form of melanoma. But that doesn’t mean that skin cancer should be taken lightly.

Very often, if you develop one spot of skin cancer, others will follow. Many people find they need constant check-ups to catch these as they grow.

What are the risks of ignoring the questionable patches on skin?
Pre-cancerous spots are easier to treat than cancerous ones. And cancerous spots that are left to grow in place often require surgery that can leave significant scarring, because removal requires deeper cutting.

The trouble with skin cancer is that it can pop up anywhere on the body, even between the toes, and the better the management of skin cancer, especially for someone who has had more than one spot diagnosed, the better the chances of catching it as it develops and halting its progress.

I know many people who have had skin cancer for decades. They get their annual checks and follow the regimens prescribed by their doctors. They pay attention and they make appointments as soon as they discover a suspicious patch of skin or a mole that looks unusual. They have skin biopsies when it’s necessary. They don’t take skin cancer lightly. It may be one of the most survivable types of cancer, but it’s still cancer. It still needs to treated, because left unchecked, the results can be dangerous. Being proactive increases your chances of surviving cancer.

It’s hard when your loved one is going through cancer treatment to find a good balance between meeting real physical needs and feeding the soul. Some days it can feel like you spend all of your time at medical appointments or in hospital rooms.

The worry and anxiety of cancer and its treatment can weigh heavy on the hearts and minds of family members. We tend to project our fears onto the future, imagining what will come and how it will come, or we bury our heads in the sand, like ostriches, convinced there is no serious threat to life as we know it. The actual view is more balanced than that. There will be good days and bad days, just like real life. And just like with real life, you need to make an effort to continually connect to your loved one who is going through cancer treatment in meaningful ways.

It’s easy to give in sometimes to the darkness, to believe there is little hope or little to be gained from the struggle. Caregivers need to understand that nurturing the heart is every bit as important as nurturing the body of a cancer patient. But how do you do that?

Inside every cancer patient, there is a person waiting to get out and about again. If he or she is hiding out at home, chances are good he or she is not living life. Caregivers can be a very positive influence on cancer patients when they find creative ways to encourage them to get back to the living. Sometimes, you just have to forget about the cancer and make time to dance, to laugh, even to sing.

We all need reminding sometimes of what we are inside — we have hopes and dreams and desires waiting to be fulfilled. When cancer comes along, it can knock your loved one off his or her feet, and all that gets put aside. But sometimes the best way to get through cancer treatment is to pick it up again, to seize the day and declare that it’s time to get back to the dance of life. That’s how you take back the control. Cancer may take its toll on your loved one’s body, and even mind at times. Finding ways to get around those limitations and enjoy life is can make a big difference in motivating your loved one to get through the tough times.

All this snow is beautiful if you’re tall enough to see over it. But if you’re a little dog, it can be scary. You can’t really see what’s hiding behind the snow banks. All you can hear are big trucks and fast cars zipping past. It can leave you feeling very vulnerable.

Navigating the sidewalks after this much snow is a lot like finding your way through the maze that is cancer.  It can be overwhelming. 

How do you keep yourself going when you feel your most vulnerable? Get yourself a pack. This little dog is no dummy. She has her canine friends. She’s even been known to cuddle up to a Great Dane. She knows she needs friends to look out for her.

Cancer isn’t a matter of survival of the fittest. It’s a matter of surviving, and you need a lot of support to get it done. Don’t feel guilty for needing people to help you through it. Often just having the chance to be part of the pack is the best reward.

Hope is such a critical tool in fighting cancer. With it, the mind works with the body, focusing attention on surviving both the disease and its treatment rigors. Without it, the mind and body fracture their relationship and go their separate ways. Gloom and despair take over, and the days grow dark and endless.

I stepped out this morning to fill the bird feeder and noticed the little statue popping up in the snow. My mother used to refer to her as Cuckoo, the Bird Girl. The chickadees and sparrows love to perch upon her head as they flit to and from the bird feeder. She was a “treasure” found in a resale shop, a garden statue that needed a home. And now, in the cold, cold months of winter, she still earns her keep.

The first thing I thought of this morning as I saw her there, buried up to her neck in snow, was that soon it will be spring. She is a reminder that the lush pachysandra, rhododendron, and hydrangea will bloom again. She is the messenger that these cold days will soon end and a new cycle of life will begin.

Hope is the desire that lives in all of us. It is part dream and part reality. When we feed it, nurture it, and believe in it, it is the tool that can help us rise above adversity. It is the rope that can pull us out of a hole. But we have to see the rope and use it in order to get the greatest benefit from it.

Often in cancer treatment, families long for a cure and are disappointed daily that it takes so long to see results. They often forget that by the time most cancers are discovered, they have been steadily growing over time, hidden from view until they became a noticeable threat to life. We don’t always see the slow improvements of our loved ones as they begin to fight back the cancer. We expect big miracles, and when they don’t immediately manifest themselves, we give in to the sadness, the sorrow, the ache that things aren’t the way we wish them to be.

When I look at this little statue in the snow, I know there will again be a spring. I cannot tell you when, but I know it will come. I will begin to see the end of winter as the days grow longer and the sunlight lingers with me.

When you look at your loved one struggling with cancer, remember to also look for the little changes that tell you things are going on deep within. Is there improvement in pain? In breathing? Is the color of the skin better? Is there an increase in appetite? These are the signs of spring for a cancer patient. There will be sunny days to come. Rejoice. Celebrate and appreciate the good fortune you have now and in the opportunities that will come. Don’t think about the years left. Think about the season ahead. Let hope live.

The New York Times had a great article on feeding cancer patients today. It’s especially relevant for parents who have struggled to get kids on chemo to eat. If you want a little inspiration and understanding, take a look:

http://www.nytimes.com/2011/01/16/nyregion/16sloan.html?_r=1&scp=2&sq=cancer%20patients&st=cse

Caregivers sometimes feel that micromanaging loved ones during serious illness is the best way to get compliance. It’s hard to see a cancer patient angry or frustrated or scared, overwhelmed by the disease and its limitations. So caregivers take charge, issuing orders. “It’s time to take your medicine!”, or “You HAVE to eat!” Why is this not a good idea?

Whether you are dealing with adults, teens, or children, cancer patients are people who have had significant freedoms taken away from them. Cancer has exerted tremendous control over their lives and it’s stolen their choices of how life will go. You may be worried that your loved one isn’t doing everything he or she could to “get better”. Some patients go through periods of rebellion against their disease, and sometimes that rebellion extends to the people trying to help them manage their cancer.

Why does that matter? People without the opportunity to make choices will often vent their frustrations at the most available targets. It’s about looking for a chance to control something, anything. Caregivers can come to represent an oppressive force in the lives of cancer patients, especially when they try to get the cancer patient to cooperate with care. Suddenly black is white and white is black. Emotions run high and things can get complicated when you lose sight of what the real problem is.

When you recognize the position your loved one is in, and you understand the human need to have choices — even small ones — you can begin to offer opportunities that allow your loved one to take some measure of control over what happens in his or her life.

Empower your loved one to make reasonable choices in everyday life. When you want to go out to eat, let your loved one make the decision about where to go. It may sound silly, but having the opportunity to choose can be very therapeutic. If you’re in charge of everything when your loved one is physically vulnerable, the relationship changes in a very negative way. You start to become the adult of the relationship and fear, partnering with frustration, can push your loved one into becoming the disobedient child.

Help balance out the imbalance of the relationship during cancer treatment by finding activities that your loved one still can enjoy and share them. It’s important to find ways to positively bond. You need to feel connected and invested in each other. If all of the focus is on the cancer, and not on the relationship itself, the cancer is in charge. When you put it aside and have fun together, you reestablish what matters to both of you. If your loved one doesn’t have the energy to do anything strenuous, don’t let that stop you. Get out and about — don’t stop living in the moment. Even if you just go out for ice cream cones, let it be pleasurable. Go see a comedy at the local theater or watch one at home together. Nuture the relationship in healthy ways. Make the time to share events, just like you make the time for medical appointments. Don’t let cancer be the only thing you two share. Whether you’re taking care of a parent, a spouse, or a child, feed the relationship and make it as important as caregiving is.

When it comes to non-compliance with medications and treatments, remember that sometimes it’s easier for cancer patients to feel that they can capitulate on medical issues if they feel that they are getting positive results in other areas of their lives. The more they have the opportunity to make decisions for themselves on everyday issues,  the easier it is to agree to cooperate on cancer treatment.

Cancer is an enemy that struggles for power over your loved one. Patients fight the battle every day. The more you help your loved one remain capable of achieving, even through cancer treatment, the less you look like a prison warden, and more like a team player. Provide the caregiving your loved one needs, but also remember to step out of that role once in a while. Be a companion who values the company of someone who just happens to have cancer. Never forget the person behind the illness. A spoonful of sugar really can help the medicine go down.

Anyone undergoing cancer treatment can tell you there are times you just don’t feel like eating. And anyone caring for a patient undergoing cancer treatment can tell you that it’s worrisome to see appetite levels fluctuate or disappear.

Why is nutrition such an important part of cancer care? Patients can lose so much weight, their ability to withstand the rigors of chemotherapy and other treatments can be seriously compromised.

How do you encourage a cancer patient who has no appetite to eat? How do you avoid creating extra pressure on the patient? This is especially important in the case of children Even normal children often resist parental efforts to make them eat.

In order to best address the nutritional issue for cancer patients, it’s helpful to understand the reluctance to eat. Did you know:

1. Chewing can be tiring, especially when chemo fatigue sets in. The easier it is to get the food into the body, the more likely the patient will consume it. Shakes, especially if you can enhance them with extra calories, are easy to swallow and to absorb. This is often good for children with poor appetites. Word of caution — supplemental shakes, like Boost and Ensure, are often overly sweet and patients can be turned off by this — save these as a last resort or for emergencies.

2. If your loved one has good energy in the morning, that could be the time to load on the calories. Sometimes a hearty breakfast will go down more easily than a big dinner. Which matters more — when your loved one eats, or IF your loved one eats?

3. The type of food you offer can make a huge difference. Most breakfast foods are tasty, but don’t require a lot of hard chewing and can offer a lot of calories. Pancakes, waffles, eggs — these foods are soft. Steak, roast pork, and chicken require effort to masticate. That takes precious energy, which many cancer patients don’t have. A dish of ice cream is easier to eat than a lamb chop. A Sloppy Joe is easier to eat than a hamburger.

4. Some patients are more comfortable eating small meals throughout the day. Have easy-to-eat snacks available — pudding cups, protein bars, cheeses

5. When your loved one is thirsty, offer liquids with lots of calories — milkshakes (use whole milk, not skim), hot cocoa, and juices. Clear juices, like cranberry, apple, and grape juice can offer a lot of calories but go down as easily as water.

When a loved one starts losing a lot of body weight, the biggest hurdle for caregivers to get over is the idea that healthy eating the most critical thing for cancer patients. While it’s true that nutrition is important to overall health, you want your loved one not to lose any more weight, so getting calories into him or her, regardless of the source, is necessary. When your loved one has started to recover from the hardships of cancer treatment, and his or her appetite has returned, that’s the time to start reintroducing a more balanced diet.

Think of it this way. Calories are calories. If you only offer nutritional foods, but your loved one refuses to eat, how have you won the battle? If you understand just how difficult it is to eat during cancer treatment, you will understand that calories matter. Cancer treatment isn’t forever, so while it lasts, maximize the positive benefits of this approach.

Cancer patients can feel pressured to eat and that’s a turn-off. Think small. Don’t go overboard and overwhelm the senses. An 8-ounce milkshake isn’t scary. A milkshake in a huge glass, with a caregiver hovering, can be. Did you know you can add a little peanut butter to a milkshake to boost the calories and add good nutrition? Make milkshakes with flavored whey powder and throw in some ice cream. The calorie count goes up, but it isn’t overwhelming for your loved one. Here are some foods that may appeal to your loved one during times when he or she doesn’t feel like eating:

Scrambled eggs with cheese
Grilled cheese
Peanut butter and jelly
Waffles or pancakes with butter and syrup
Ice cream with chopped walnuts and fudge sauce (grind the nuts)
Pudding with whipped cream
Mashed potatoes
Candied sweet potatoes
Poached or baked white fish or scallops
Crab meat or tuna salad
Stews with meat finely cut
Pot pies (make sure the meat or poultry pieces are very small)
Shepard’s pie (make sure the hamburger pieces are small)
Macaroni and cheese
Souffles
Quiches

One of the hardest things for cancer families to do is learn to live in the moment. How do you do that? How do you let go of the panic and fear long enough to enjoy the hours of the day with your loved one?

Anyone who has cancer can tell you it’s tough to do. And anyone who loves someone who has cancer can tell you it’s nearly impossible to forget that you might lose someone to this insidious disease.

1. Recognize what is in the immediate future —
Is cancer treatment viable? What will be the side effects and how can they be managed to provide the best quality of life for your loved one? If you understand how cancer treatment affects your loved one, you can figure out ways to keep him or her energized. When do the side effects of chemotherapy kick in? That’s not a good time for getting things done. When do the side effects of chemotherapy drop off? Use that as the time to get moving and get active. Appreciate what you have and use it to get to tomorrow, and next week, and next month. Build on segments of time.

2. Concentrate on what your loved one can do, not on what he or she can’t —
Will you waste precious time and energy on things that can’t be done, or will you move forward with the knowledge that there are things you and your loved one can still enjoy and succeed in doing? Make a list of things that are doable and then do them. If you have to take it slowly and adapt the list, that’s okay. What’s important is to accomplish things that matter.

3. Be realistically optimistic —
As a caregiver, can you find the sunny side of the street to walk upon? How you view your loved one’s cancer will have a tremendous impact on everyone. It’s easy for cancer patients to feel overwhelmed by their experiences. If you look for the silver lining in every cloud, you can help direct the family to experience positive things during your loved one’s cancer treatment. Lead the way.

4. Get help if you need it —
If you feel depressed or fearful of your loved one’s cancer, your care-giving will reflect that. Find a safe outlet other than your loved one, so you can discuss these issues and sort them out. Many cancer centers have valuable resources and there are support groups online that will share their cancer experiences with you and your loved one. Don’t bottle it all up. Deal with it.

4. Learn more about cancer and how it effects the entire family —
Talk to the professionals at the cancer center. Talk to other experienced caregivers.  Do the research. You need to be able to meet your loved one’s real needs, and the best way to do that is to understand and appreciate what those are. Cancer doesn’t just affect your loved one’s physical health. It takes a toll on the whole person and it can change how a person sees the world.

5. Seek wisdom from other cancer survivors —
Many patients have lived with cancer for decades. You probably already know several. How do they do it? Many have learned to manage their symptoms and have found ways around the big obstacles. They have much wisdom to share with cancer patients and their families, and they are wonderful resources.

6. Don’t let cancer isolate the family from the living world —
Help your loved one to stay connected to family and friends during cancer treatment and beyond by reaching out. It’s important for your loved one to still engage in as many normal activities as possible, but sometimes you have to adjust those to allow for the side effects of cancer treatment. If your loved one begins to emotionally withdraw, it can have a negative effect on his or her opportunities to manage the cancer. Find out what’s going on and then help your loved one overcome these difficulties in a realistic way.

Sometimes it’s hard for families to cope because their child is feeling the effects of treatment or the illness. Families stop playing and having fun together. Play is very important in a child’s life. Having fun is an important bonding tool, especially for siblings. But how do you help your sick child to have fun with siblings who may have higher energy levels?

You can adapt some common card games to increase the fun quotient. You can use a regular deck of cards, minus the jokers. In Go Fish, the players try to match two of a kind by asking other players for cards they need to complete their pairs. The dealer deals seven cards to each player and places the rest of the deck on the table. The player to the dealer’s left starts. If a player asks for a card from another player, but doesn’t get it, he or she must pick from the pile. As soon as a player has all four of a kind, he or she puts it down. But what if you add a challenge to the game? Why not require the player to do a fish impression before he or she asks for a particular cards? Why not require that a player “swim” around the group before setting down those four of a kind? Your sick child can participate from his or her bed, by pretending to swim.

Crazy Eights is another game that can be adapted to create more physical fun for the group. The object of the game is to get rid of all your cards first, by playing off of the other players’ cards. The dealer deals five cards to each player (seven if only two people are playing) and the rest go into a pile. The dealer turns up the first card on the pile and the player to his or her left must play a card of the same number or suit. If the two of hearts is the first card, the player may play a two or a heart. If a player has an eight, he or she may call for a new suit. In your version, you can require that the player who plays the eight has to do a silly dance around the group to announce the new suit. If it’s your child’s turn, but he or she doesn’t have the energy to get out of bed, your child can pick someone to do the dance or your child can sit in bed and do a modified version, even using a puppet to make it sillier.

Why do these kinds of activities with a child in cancer care? Very often, the first thing to disappear from the home when a child is seriously ill is the laughter. This is often devastating to siblings in the family, but it also affects the sick child. When parents let go of the stresses and worries of caring for their child, and they engage in fun activities like playing children’s card games in a silly way, they encourage the family to laugh again. Laughter is a very important bonding tool. Being able to have fun together means you’re still a family, in spite of the cancer. Card games don’t really take very long to play, but if you can enjoy them as a group, it sends the message that you can work together while your child is sick. And having the chance to move, even if it’s a goofy dance, lets go of some of the tension that builds up in the body, especially if the family is sitting for long periods of time in a hospital room.

For more ideas on family fun, visit my website:
https://sites.google.com/site/thepracticalcaregiversickkids/