Helping Others Help You
Let's face it, illnesses
such a cancer may make people uncomfortable. Few of us know exactly what to say
or do when someone we know is stricken by a serious disease Consequently, we may
say insensitive, even stupid things. It is important to remember that when people
say foolish things, they are generally speaking from their own nervousness and
insecurity. Perhaps, if you can talk to them openly about cancer, they will relax
and begin to deal with you in a more caring and supportive manner.
Many people offering assistance are not just trying to be polite. They are seeking direction. They are asking for a concrete way to let you know they will not desert you and are grateful to have something to do to show their continuing friendship. So, why not give them something to do? If you can give them a specific chore, it takes one thing off your hands, and you've done them a favor as well.
New friends and relatives will usually wait for you to indicate how to proceed. This point is particularly important if you have trouble reaching out to others. Asking for assistance is really a way of making friends and relatives feel useful and important in your life.
It is difficult to direct your energies toward helping other people when yo feel as if you own life is stressed to the breaking point. Still, if you can provide others with a little guidance as to the role they can play in your life now, the rewards can be those of continuing friendships based on mutual concern and support.
Lost Friendships
Regardless of what you
do to maintain relationships with those in the outside world, people might avoid
you. Lost friendships are a real and heartbreaking threat to those dealing with
a serious illness. There are a variety of reasons why friends and relatives don't
call. Some might find it difficult to cope with temporary changes in your appearance.
Some might not be able to face the possibility of your death or even of their
own mortality. Some may simply not know what to say. And some, despite irrefutable
evidence to the contrary, will steadfastly hold onto the false belief that cancer
is contagious.
An open conversation might help to dissolve their fears, ease their discomfort and possibly provide them with a renewed opportunity to participate in a more active form of friendship and support.
Making New Friends
There are no easy answers
or pat solutions to prevent relatives and friends from deserting you. When it
happens, especially during treatment, it is particularly painful. There are others
"out there" and you can develop new friendships with people who will appreciate
you. The mutual support of others with cancer provides many people with comfort
and solace as well as an opportunity to make new friends. As one single man said:
"Of course, I'd never recommend getting cancer as a way to broaden your social sphere, but I actually have more friends now than before I got sick. I've met a lot of wonderful people in support groups with whom I share other interests and activities."
Like so many others, fellow employees or students don't know what to say and are trying to protect your feelings or their own. In time, most people will become relaxed in their presence. If you can remain patient, open and forthright about your condition, you may be able to clear up many of the misunderstandings co-workers and classmates have about your illness.
"Work was very important to me. I wasn't about to give up my job because other people reacted negatively to my illness and appearance. Things are a lot less tense since I've shown that I can stay the course. I look better, but the people I work with also understand more about my illness now, and our interactions are beginning to be more natural."If you return to work or school after your treatment has been completed, chances are you will look well and function quite normally, and you might find that other tend to underestimate the seriousness of your condition. Many people take an "it never happened" approach. They may greet your return with, "Gee, don't you look great? Glad you're back", as if you were on an extended vacation at a tropical resort. Acutally,there are some who appreciate a nonchalant attitude toward their illness, but it can be demoralizing when those at work or school don't even ask how you feel.
Dealing with Discrimination
When people with cancer
discuss work, they often talk about two major fears. One, they fear losing the
companionship of their fellow employees and two, they fear losing their job.
Some employers are supportive, but many are not. Outright dismissal is rare, but many companies do practice subtler forms of on-the-job discriminiation, ranging from demotion or denial of advancement to forcing a patient to surrender group health insurance in order to keep his or her job. Sometimes a patient may be gradually forced out of their job because management decides they have "no future" and quietly eliminates them from long-term plans. Employers have been known to show patients excessive consideration, followed by unwarranted reductions in their workload, until they are finally persuaded to leave for the sake of their health.
The most blatant form of discrimination occurs when people apply for a new job or entry into school. Many companies and professional schools and the military routinely reject those with a history of cancer. Rejection is usually based on the rationale that people with similar medical histories take too many sick days, are poor insurance risks, or make co-workers or classmates uncomfortable. While there are numerous studies showing the absentee and turn-over rates of people with cancer are the same as other employeees, employers and school administrators remain overly pessimistic and caustious about accepting survivors.
It is not surprising that many people try to conceal their illness for fear of losing their job or insurance, or the reactions of prospective employers or institutions of higher learning. Most people feel it is usually too difficult, and too stressful, for patients to hide the fact they are undergoing treatment. Once treatment has been completed, survivors have different opinions about whether or not to make a full medical disclosure when apply to a new company or school.
Some agree with sentiments of this former lymphoma patient, "I've tried it both ways and, at this point, I'd be afraid to ever tell a potential employer. I haven't told the company I work for now, and I don't intend to."
Others feel just the opposite. As one woman said, "For me, telling was easier than hiding information. I got everything out in the open right away. Then I didn't have to worry about a previous employer or reference inadvertantly letting something slip, or whether a physical examination would be required, or how I would approach my boss if I ever had a relapse."
There are no easy answers to the questions of whether, when and how much information to divulge about your illness. Disclosure is an individual issue, but you should be aware that "lying" or omitting information on an application or during an interview can have ramifications, one of which might be immediate dismissal. It is therefore adviseable to get the advise of a professional employment counselor as well as a laywer before you decide what approach to take toward this issue. This is discussed in the Americans with Disabilities Act.
Information about Insurance
Medical insurance is a
special concern of those with cancer, and many people have difficulty obtaining
adequate coverage due to their past or present condition. People with life-threatening
illnesses are classified as high risks, and a private major medical policy handling
this category can be extremely expensive and limited in coverage.
Employees covered under a group policy carried by their employer may have trouble qualifying for a new group policy if they change their job, unless a new employer does not require listing a medical history. Most insurance companies, will allow employees who are leaving to convert their group plan to a private plan. This typically is at much higher cost and with limited coverage. The federal (USA) policy of COBRA also allows 18 months of insurance policy after leaving (or being terminated) at a job.
Even people with adequate insurance for most illnesses may find a substantial portion of the expenses incurred during treatment for cancer are not covered by many major medical policies. The high cost of health care, combined with limited coverage, often makes it necessary for patients to purchase additional insurance.
As a special note, parents of teenagers or young adults with cancer might wish to begin exploring alternate forms of coverage before they reach the age when they are no longer covered by a family or school policy.
A Reason for Hope
Treatment for cancer has
improved dramatically over the last two decades. Many people go into remission.
Many become long-term survivors, the majority of whom are considered cured after
five years without evidence of disease since the cessation of therapy. Research
continues, offering the promise of even better treatment methods, fewer complications
and increased survival rates. So while no one can guarantee your future, there
is a real cause for hope.
While survival percentages and averages are important, it is even more important to recognize the individuality of each case. Each of us has our own genes, our own immune system, our own urge to fight, and our own will to live. These are characteristics which surpass analysis. There are many people living disease-free today, who, according to the charts and statistics, should not be alive at all. Year after year, they continue to defy poor prognoses and negative statistics.
Even if the outlook for recovery becomes particularly guarded, there may be a new treatment and another remission . . . and those intangible gifts life unconditionally bestows upon us all. There are still experiences to be shared, more sunrises and sunsets, more good days and easy nights.
"As I was getting into my car the other day, I was thinking about how much my life had changed over the last couple of years. Two years ago, I was in the middle of treatment for cancer, and I felt so scik I really thought I was going to die. Now I have so much to look forward to. I'll finally be graduating from medication school soon. My wife and I are expecting our first baby. Then I suddenly thought, 'Oh God: What if it comes back?' I really got scared for a minute. So, I had to tell myself again, 'Maybe it will. But it's not here now. Just start the car. And be grateful for this day.' It has been almost two years since my last treatment, but that kind of thing still happens alot to me."No one ever forgets that they, or someone they love, once had cancer. Treatment ends, but anxiety can linger.
"I had beaten leukemia. I was totally estatic," said one man describing his last chemotherapy session, "for about a day and a half." "Then", he continued, "I began to think that maybe treatment wasn't really so bad. I mean at least I was constantly monitored. How would I know if my bone marrow was secretly starting to go haywire again? Of course, I couldn't know. I still don't know but, as time passes, I wonder less and less about it."Initially, a cold or the flu -- even a bad cramp -- can cause panic. Another patient said:
"For the first time or so after treatment, I kept running back to my doctor every time I got a cold, begging for a bone marrow aspiration. I hate bone marrow tests, and if you've ever had one, you know its not something you beg to have done. But, I would get a little crazy because I wsas so afraid my leukemia had returned. Thankfully, my doctor never complied with my wishes, but instead sent me home with instructions to take aspirin and drink plenty of fluids."Follow-up appointments, such as a six-month or annual checkups, might also be times when fear and anxiety overshadow hope and joy. Many find it upsetting to return to their physician's office or treatment center -- places filled with reminders of the most frightening aspects of illness -- and some people actually experience physical symptoms similar to those experienced during treatment. These reactions are usually milder in nature, however, and generally pass quickly.
Even the approach of those magical five and ten-year milestones might make you feel more anxious than secure. There will be other times, too. Moments -- unrequested and unwelcomed -- when you will suddenly remember and, once again, feel as if your whole life is hanging by a single thread. These are feelings known to everyone who has been touched by cancer, but moments of fear and anxiety grow further and further apart as you continue to focus on thoughts and activities other than those involving your illness. Time does help!