• Exceptions to the rule
  
• Cultural and gender differences
  
• Loved ones
  
• Communicating needs to adults
  
• Communicating with children
  
• Communicating needs to teenagers
  
• Good friends
  

Part of the reason I don't have problems getting support is because I'm not easily offended. I told anyone who was interested about my ostomy for the first year or so when I guess it was still a significant emotional issue for me. If they so much as looked at me like they might be interested I told them as much as I wanted them to know. One of the guys I worked with once called me an asshole. "Nope," I said. "You can't call me that anymore. I don't have one." He turned about four shades of red. It was quite amusing.

Despite these ups and downs, many colorectal cancer survivors have learned by experience about communicating with others. Details regarding how to discuss your illness will be touched on in each section below, but some very general guidelines are:

• With your closest loved ones, be as honest as possible, as gently as possible.
• With those to whom you're not very close, use your judgment about what, and how much, to say in order to protect yourself and them from undesirable consequences until you can assess the quality of their responses. You may choose, for example, to tell some family members, social acquaintances, and coworkers a few things about your treatment while avoiding lengthy, painful discussions, or topics they're likely to misunderstand.
• For that group in the middle comprising good friends and perhaps some other family members, try to sense the boundary. Just as you have limits to what you can bear, few friends are able to absorb all of your pain all of the time. Asking, "Are you in the mood to listen to this today?" or "Do you have the time and energy to be my sounding board?" are two possible approaches. And the reverse is true: you need to be clear but tactful if you don't feel like discussing your circumstances, for instance, or if you aren't feeling sturdy enough to have visitors, or if caring for your ostomy is still challenging.

Exceptions to the rule

The previous general suggestions are probably no surprise to you. Nor will be the fact that there are exceptions to every rule.

The general guidelines of telling your closest loved ones the most, with greatest honesty, may not hold. For example, you may have a close relative who handles bad news better if you joke about it a little, but who will never be able to react appropriately to the rawer emotions. He or she may turn tail and run if you cry, for instance. Conversely, you may have a casual friend with a medical background who is a skilled listener, and who can at times provide you with more objective support than your family can. From such an interaction a very deep friendship may grow.

Although most loved ones will support you, it's not unheard of for some family members and friends to disappear when they discover you have cancer. There's no one solution to this very painful problem. Often, colorectal cancer survivors just move on to find new friends, but some cancer survivors justifiably neither forgive nor forget. Sometimes the absentee friend will reappear and apologize, perhaps not until years later.

Cultural and gender differences

Gender and cultural differences in communicating about illness can affect the outcome of asking for help, especially in the US, as our population is composed of so many cultural groups.

Insight into possible cultural and gender differences can help you understand how you're being perceived, how you react to others' responses, and can help you make corrections if needed. For instance, people who are less demonstrative may feel manipulated by people who are highly expressive of emotion; whereas those who are more emotionally demonstrative may feel that less expressive people are cold and uncaring.

Generally, the perception in our culture is that Black Americans, Native Americans, and those of Northern European extraction tend to "report" on their illnesses and feelings in a matter-of-fact tone, or not discuss them at all, rather than show emotion while discussing them. Americans from cultures of the Mediterranean or some Asian groups are reported as being more dramatic and forthright when talking about how they're feeling. Japanese and Japanese Americans, in contrast, often are reluctant to talk at all about disease.

Aside from differences in cultural backgrounds, there are perceptions, exhaustively discussed in the popular press, that females are more expressive of emotion than males.

In short, there can be obstructive differences in the styles of different groups of humans as they confront illness. Keep in mind that any method of expression is simply a style, not a fault or virtue: that is, each style is adaptive or maladaptive in different settings. For example, keeping a stiff upper lip and trying to be the strong, silent type might be maladaptive when you need to ask for help.

Loved ones

Some families work better as a team than others. It's rare for any team of people to respond perfectly when it comes to dealing with a crisis. You may observe these lapses often in the workplace, but it can be especially hurtful when one's family fails to respond appropriately.

Owing to the many variations in group behavior, it's not possible to cover in this section all family behaviors with which you might have to contend. Instead, the most common problems and solutions are discussed.

For many people of all ages, a new crisis tends to elicit behaviors that worked well in the past, especially at first. These reflexive behaviors might be arguing, escapism, intellectualizing the problem, or taking control. For children or grandchildren in crisis, we might see a return to the dependent behaviors they had outgrown. The overall impression in a crisis may be that those around you are reverting to immature, maladaptive behaviors. Keep in mind that colorectal cancer is a brand-new experience, and that learned coping behaviors can be hard habits to change, especially in a time of great stress.

Shelly describes his family's understanding of what he's going through:

My wife always said, "Salt is no good for you." While she's a good cook, I found some of her offerings bland because she uses very little salt.

Recently she put the salt shaker in front of me and said, "Enjoy." I guess she, too, is compensating for this disease.

It may be harder for your loved ones to help you if you don't communicate clearly about your circumstances. With this group, don't be shy or proud. Ask for all the help you need, even if it embarrasses you. Many family members express chagrin at the seeming reluctance of cancer patients to "trouble" them. They in turn hesitate to invade the patient's privacy by prying or being dominant. Consequently, the already upsetting cancer experience can transform into an even larger menace than it is, because nobody will talk about it.

On the other hand, if your family is closely knit, sharing and verbalizing just about everything, the stresses associated with colorectal cancer might appear to be taking a greater toll than one might see in a family with fewer emotional ties and more independent members. The telling point is the success of your family's long-term adaptation, not any temporary disequilibrium, emotional flotsam, or distancing you may experience. Shelly's remarks illustrate what works for him in the long term:

Crying is a catharsis for me. I am not ashamed to show my feelings even with tears. It's who I am. I've always been a softy when it comes to emotions.

What you need from loved ones may change as your experiences evolve from diagnosis through treatment. Different relatives and loved ones may prove good at handling different things. Unlike coworkers and casual acquaintances, close family members and loved ones probably won't surprise you too often with their reactions, because it's likely you already know their weaknesses and strengths. You may find yourself occasionally disappointed, but perhaps not surprised.

Communicating needs to adults

Ideally, communicating with the loving adults in your life about your needs should be relatively easy. Honesty, gentleness, and especially gratitude should serve well. With a couple of exceptions, such as a relative who's mentally ill or physically frail, adults who are nearest and dearest should be trusted to handle every aspect, even the worst aspects, of your illness appropriately.

My wife wanted to learn to take care of my ostomy in case I got really sick. In the last two years, though, I've never been sick enough to need help. No matter how lousy I feel, if I can get up and take a shower I can take care of it myself.

In reality, however, cancer might challenge a family's beliefs and myths about their family unit, and might alter the established dynamics of the family. If the father, mother, husband, or wife has always been a wise and strong provider, for example, the balance of power may shift temporarily during treatment for colorectal cancer. If the partner without colorectal cancer has developed an untoward reliance on the strong one, it may be a difficult transition to assume control for a while. The partner with colorectal cancer may suffer lowered self-esteem when roles shift. It's important to keep in mind that often these shifts are temporary. Older people with colorectal cancer may have adult children who want to return to their parent the nurturing they received when they were young.

Many colorectal cancer survivors note that their loved ones become ill, too, while trying to help them deal with treatment and emotional issues. Upper respiratory infections such as sore throats, persistent GI tract problems such as diarrhea, emergence of autoimmune disorders, and worsening of certain other chronic illnesses such as herpes, diabetes, or heart disease often go hand-in-hand with the extreme emotional stress associated with a loved one's having cancer. At times, though, colorectal cancer survivors report that a relative seems to want to be sicker than the person with cancer. This does indeed happen in some families, and if it happens in yours, chances are you've seen this kind of behavior before from that individual. The deciding factor is whether the ostensibly ill person continues to provide help to the best of his or her ability, or uses the illness as an excuse not to help--or even to punish you.

If you find that the adult loved ones in your life are reacting to your needs in unhelpful ways, do ask why. It may be a simple thing to put right. If they seem angry, of course you needn't apologize for having cancer, but it's likely some older, unresolved issues are being forced to the fore by the stress of dealing with colorectal cancer. They may feel, for instance, that they owe you little because in the past you were not supportive of them when they needed help. Communication, humility, and open-mindedness may work to break the impasse.

If attempts to communicate don't make much difference, it may be a disappointment to realize that the strength you thought existed in the relationship does not exist--or at least not for this set of circumstances. Perhaps you could rely on someone else temporarily for what you need. Sometimes loved ones just need some time to settle down and get used to the changes and increased responsibilities that cancer brings.

Avoid asking a third family member to intervene if you have difficulty getting along with a loved one. Triangles such as this seldom succeed because they hint at two-against-one and talking behind each others' backs.

If reasonable attempts to get the help you need fail, you might discuss attending family counseling with the person who seems to be acting out of character.

If none of these attempts works, then finding alternate support or finding ways to live without such people, temporarily or permanently, is in your best interest. Because of the seriousness of colorectal cancer, your concerns must be put first, at least for the time being. You may be surprised to find that, in spite of colorectal cancer, your life is more serene and enjoyable in the absence of such difficult people. A decision not to deal with someone is also a means of dealing with him.

One survivor describes her experiences with being nurtured by her mother in a way she finds less than ideal, and how she and her sisters are handling it:

Four years ago, when it looked like my colon cancer had returned, I busily planned my "last Thanksgiving." I've managed three more Thanksgivings without being poisoned by my mother's turkey.

Luckily, we evaded her kitchen again this year. My sister cooked the turkey. It was delicious and didn't have pink bones. Mom, in her own bizarre way, has managed to cook turkey in cool ovens and hot ovens, always leaving it a bit underdone or vastly overcooked. If you think the colon cancer drug CPT-11 is powerful, you should taste Mom's turkey.

I'm approaching a new Christmas this year where I hope to avoid being poisoned by Mom's roast beef. Some lady down the street--it's always a lady down the street--gave her a recipe for cooking roast beef by putting it in a 500-degree oven, posting a sign on the oven door that says DO NOT OPEN, turning off the oven, and waiting until everyone is starving.

For those of us with challenged colons, this holiday cooking is the pits!

Each year one of my four sisters gently undertakes the cooking of the meals, keeping Typhoid Mother as far away from the kitchen as possible.

Another survivor, an ostomate, describes problems he's heard about from other ostomates:

One of the people in our ostomy support group commented that her husband couldn't deal with her ostomy. Somebody else who had had a colostomy for 11 years can't really talk to her husband about how it sticks, how it works, how it makes her feel. Her husband just can't deal with it. It also took her daughter 10 years to talk about it--she's in college now. She said, "Mom, I hope you don't mind I told my friends in college, and they thought it was really cool that you had this, that you live well with this." It was the first time her daughter acknowledged it in a positive way. One woman who was at the meeting never changed her own appliance; her daughter did it for her. This meant she couldn't go anywhere without her daughter. The woman was in her forties, the daughter in her twenties--both quite capable physically of moving on and taking care of things on their own.

Communicating with children

Communicating with young children has different goals than communicating with adults. While it's true that children sometimes provide major instrumental support if no other family members are available, generally it isn't necessary or fair to expect a great deal of help from children. More often, they can be asked to help with small, safe chores in order to make them feel part of the solution, and to reinforce the honest relationship they've grown accustomed to.

Human children are inclined by biology to think the world revolves around them. Very young infants do not understand, for instance, that Mommy is a separate person who can leave them with Daddy and go grocery shopping, and they may become quite upset when they discover that Mommy is gone. This bonding trait is probably essential to survival for a species whose young have a long and vulnerable nurturing period such as humans and some other mammals have.

This egocentric thought process lingers well throughout childhood, though, and causes children to think that bad things that happen are their fault. They may think that you developed cancer because they were very angry with you when you once punished them, for example. They may even have wished you were dead, and now it appears to be coming true. Depending on their religious upbringing, they may believe that God saw them misbehave and is punishing them.

For many reasons, children see us differently from our view of ourselves. Lack of experience with emotions, fear of abandonment, or just plain being shorter than adults means their perspective is truly different. Often small children can't distinguish a sad or aging adult face from a grouchy one, for example, and because adults are all-powerful from their perspective, unconsciously they hedge their bets by tailoring their actions to forestall anger instead of sadness, which from their perspective is the worse of these two in terms of the consequences for the child.

This difference of perspective may also cause efforts to explain colorectal cancer to backfire. If you try to compare colorectal cancer to any illness they've had, it may create an extreme fear that becomes obvious when the next normal childhood illness strikes them.

For these and other reasons, honesty with children about colorectal cancer is essential.

Communicating needs to teenagers

This is a topic on which an entire book could be written.

An adolescent trying to break away from the family and become independent is likely to experience quite ambivalent feelings if a parent or grandparent is diagnosed with cancer. Just at the time in his life when he'd rather avoid talking to any adult, circumstances may force him to become very intimate and empathic with an older person viewed as powerful. He must be patient and caring toward one of the people most likely to make him angry by holding him to high standards, enforcing rules, denying him privileges, or restricting his freedom. Some find that teens turn surly, or run amok, when faced with the physical, emotional, and financial hardships associated with cancer. Some experts say that boys are more likely to act out anger and grief in violent ways than girls are.

Nonetheless, some people find that their adolescent children or grandchildren are extraordinary in their ability to comprehend what's needed, and that they follow through with a maturity that's well beyond their years.

But, even more so than younger children, teens can appear to be knowledgeable and well adjusted when in fact they are not. This group may have an intellectual maturity that is beyond their level of emotional maturity. A willingness to overlook unexplainable lapses, a keen awareness of dangerous symptoms such as excessive silence, and an honesty that is geared to their level of understanding are wise. Frequent offers to chat candidly are a good tactic. These offers confirm their belief that they can approach you about difficult subjects.

If you have a teen who's developing behaviors that are a danger to herself or others, such as acting out rage, violating laws, or considering dropping out of school, find a counselor who specializes in the adaptation of children to serious illness. Attempts to handle these problems by yourself may risk compounding your health problems, may make you a psychologically abused parent or grandparent--and they may fail anyway. A teen may carry "cancer anger" formed during these especially rebellious years well into adulthood.

If you have a teen who's doing housework and assisting with medical care while continuing to carry his academic responsibilities, thank him at least daily.

I have a ninth grader, a boy. It is such a hard time for someone that age to begin with, trying to deal with both adolescence and cancer. My son has been handling my having cancer pretty well, but he is very sensitive and even though I appear to be fine (I haven't lost any hair, and actually gained quite a bit of weight since my diagnosis), when I wasn't doing as well after my last operation, Joe was constantly being sent home from school with stomach problems.

I think it is important for us to be honest with our children concerning our cancer, but I always try to be positive and upbeat, and by being so, I feel it puts my sons more at ease. Since I am now on disability, at times I feel I am able to help my sons even more because I am there more for them.

Good friends

You expect your good friends to stand by you while you're facing serious problems. Close friends can offer you help such as emotional support, occasional running of errands, some cooking, household chores, baby-sitting, or an escapist night on the town. As with loved ones, you may occasionally be disappointed or surprised if they fail to live up to your opinions of them. On the other hand, many colorectal cancer survivors have discovered that good friends earn their wings in heaven by way of loyalty and selflessness, and that some come to mean as much to them as their family members.

Because they usually have a lower emotional investment in the relationship than family members, good friends can be easier to deal with at times. They can be more objective about some of your problems.

This objectivity is purchased with their relative distance. Good friends, in order to remain good friends, may need an occasional vacation from you and your problems. If you give them space to refresh themselves, they are able to return to you with more emotional vigor.

Most people will find that at least some friends or acquaintances will have responses that are disappointing, but you can't control how other people react to cancer.