Support from Organizations and Acquaintances
It would be difficult to say too many good things about the effect of a support group on a
cancer survivor. In addition to the personal testimonials from people who feel they found
sanity, love, and knowledge from the members of their support groups, research by Dr.
David Spiegel has shown that emotional support can improve the quality of
life of cancer survivors and possibly event extend it.
Support groups are the one place outside of your inner circle of loved ones where you can
ask or say just about anything. In some cases, you can ask help of support group members
that you would be afraid to ask of family for fear of overburdening or frightening them.
Moreover, the setting is sometimes freer than the family setting regarding candid speech,
because everyone present understands all too clearly what you're going through.
For some, support groups can be the difference, literally, between life and death. The
opportunity to exchange information with those who have already weathered cancer can
provide you with the knowledge to question your treatment and seek medical help
elsewhere. Support groups are an immeasurably useful way to do this, bringing together a
variety of skills, including medical and legal knowledge.
Support groups are offered locally in many areas by groups such as the American Cancer
Society, the Wellness Community, or local hospitals. Telephone support groups are
overseen by several of the nonprofit organizations dedicated to curing lymphoma. If you
have a computer, support groups are also available on the Internet.
Local, telephone, and Internet support groups have their advantages and disadvantages.
Many people use several.
Some people are very put off by the thought of talking to others in a support-group
setting. Steve, ex-Air Force and a survivor of non-Hodgkin's lymphoma, describes the
complete turnaround in his feelings about support groups:
I speak from experience when I say that support groups are a godsend. Thirteen years
ago, I was in the middle of treatment, I was depressed, angry, scared, and just about
every other feeling you can think of. When my doctor mentioned the idea of a support
group, I just blew the whole thing off. The way I was feeling, I figured the last thing I
needed was to sit around and listen to a bunch of other people whine and cry about how
bad they had it.
My wife finally talked me into going to a support group sponsored by the
Leukemia Society of America. What I've found over the years is a bunch of folks who
have become another family. Whether they're the patient or a family member, each has
something positive to contribute to the group. We learn from each other different ways to
handle the things that come up, from dealing with sudden baldness to getting through the
rough times that inevitably arise. By sitting down for two hours every month with a group
of wonderful folks who are in the same boat, I've learned how to take charge of things
and how to live with cancer instead of dying from cancer.
My wife is a nurse. She understands and tries to explain to me what's going on
with this thing. We've been married nearly twenty-eight years and still deeply love each
other. She stood by my side and helped me to become a cancer survivor instead of a
cancer victim. She has experienced this whole thing from the vantage point of a family
member, and that's its own hell. She didn't know if she was going to have to raise our
two daughters alone or not. She's been my rock. But she's never had the disease.
My point with the above rambling is that nobody can relate to having any kind of
cancer except somebody who's had it. And that's where the support group comes in.
Local support groups
Local support groups are useful for those who are able to get about easily, have access to
a car, and enjoy face-to-face discussion, even about topics that might be upsetting. If
you're in a local support group, you're likely to have a stream of visitors if you're
hospitalized, and friends to offer you instrumental support such as help with groceries or
babysitting. Often, members trade phone numbers and form deep friendships.
The disadvantages of local support groups are that they usually contain only a small
number of people, perhaps ten or less, and only meet at certain times of the week or
month. The smallness of the group can affect the quality of the information shared. For
example, if no group member has traveled for care, you'll have to make your travel plans
with less foreknowledge. Some members of local support groups report that they feel
excluded when things take a turn for the worse, as if some group members want to shield
themselves from the possibility that similar bad things may happen to them, too. This is
less likely to happen if the group is moderated by a trained therapist.
Internet support groups offer several hundred friends available at all times of the day.
You can communicate at 3 AM when you have insomnia, and you can communicate with
other survivors even if you have trouble getting around for various reasons. The people
you meet will be from all over the country, and in some cases, all over the world, and
represent a tremendous amount of experience. Furthermore, if you're a little shy about
expressing emotion in front of other people, an Internet group is a good choice because
you can write a message and read what you plan to say before you decide to send the
message. If you need to cry, you can do so without feeling conflicted about crying in
front of other people.
Many of the Internet support groups schedule in-person reunions and gatherings. Often,
members form personal friendships and write private email, or trade phone numbers to
form even closer friendships. Sometimes members discover that they're living quite close
by and become very good friends.
The Association of Cancer Online Resources (ACOR) has pointers to cancer email
discussion groups. ACOR offers a handy automatic subscription feature for these and
other discussion mailing lists. You can find them on the Web at http://www.acor.org/.
The chief disadvantage of an Internet support group is that the loss of a friend is very
difficult when we cannot say good-bye in person, when we have no photographs to
remind us of them, and no grave to visit. Sometimes group members simply will never
hear again from another member, and they never learn what really happened. Some group
members deal with their grief by creating a memorial web page dedicated to a lost friend,
containing photos and examples of wisdom learned about living with cancer.
Other disadvantages of Internet support groups include cultural differences that cause
mistaken communication and needless arguments, heavy mail volumes about topics that
you may feel don't pertain to your circumstances, incorrect medical information, a range
of social and communication skills, and, of course, the cost of a computer and access to
A recent survey has shown that the over-65 age group is among the most active and
fastest growing groups on the Internet, seemingly not reluctant to acquire the new skills
needed to use a computer.
Telephone support is offered by certain nonprofit groups dedicated to curing cancer and
supporting cancer survivors. They offer to act as a clearinghouse for one-on-one
telephone contact between those who would like to speak with others in their situation.
What you can ask of your coworkers depends on the structure and size of your workforce,
the level of competitiveness your profession experiences, and the degree to which your
work relationships drift into friendships. The minimum we can ask of coworkers is
patience and discretion, but frequently they give us much more. Often the feelings your
coworkers express and the support they offer are a tremendous reinforcement for your
well-being. To know you are needed and missed can be uplifting.
In general, though, we must exercise some caution asking favors of coworkers who are
not also friends, because the request may seem out of bounds, or may backfire if we're
deemed too sick to perform well after revealing a weakness or need. As with some
friends, coworkers may want to know everything about your illness, nothing, or some
intermediate subset of information that's hard to define and may change daily.
The good news, though, is that many cancer survivors report that coworkers pitch in and
offer assistance without being asked: blood donations, bone marrow donor drives, bake
sales, shopping, babysitting, cheering visits, and so on may materialize without your
having to ask. Many cancer survivors report that coworkers donate unused sick days to
them, or pinch-hit for them if they miss time or feel sick or tired.
If some coworkers are reluctant to recognize your illness owing to their own fears or lack
of social skills, they might never refer to it, not even to wish you well.
You can feel free to say nothing to the potentially unsympathetic coworker if you choose,
but there are disadvantages in not keeping your immediate supervisor informed about
your health status. For example, if your supervisor is unaware of problems you're
experiencing as a result of your illness or its treatment, you may have difficulty winning a
favorable decision if a dispute about your performance arises.
Remember that cancer is considered a disability under the Americans with Disabilities
Act (ADA), so negative reactions in the workplace that result in demonstrable emotional
or professional harm to you, such as denial of a promotion or censure for using earned
sick time, don't have to be endured without legal recourse.
Employee assistance programs (EAP)
Increasingly, employers are finding that it's to everyone's benefit if they offer formal
assistance to employees who have special needs at difficult times. Employee assistance
programs are designed to help the employee weather life changes and become happy and
productive again. If your employer has an EAP, you should ask what it has to offer.
You should be aware, however, that if a health-related dispute over job performance goes
to court, employers can subpoena any doctor's records, and so are given access to records
that accumulate when you use an EAP. This includes material that most people assume is
confidential, such as the notes a psychologist or social worker takes during a therapy
session, even if they don't bear directly on your job performance.
If you're seeing a psychologist privately, your employer may not know that you are or
who you're seeing. Clearly, this makes serving a subpoena more difficult. But if you use
an EAP, the wolf is guarding the chickens, so to speak. In spite of safeguards that
supposedly shield irrelevant material from nonprivileged eyes, your employer may
become privy to information, for example, about a dependent child who began using
drugs after your diagnosis. These confidential documents also may be admitted as
evidence into the permanent and public legal record should you have a workplace dispute
that is settled in court.
Social acquaintances comprise a wide variety of people, some of whom, such as church
or temple members, expect to be asked for help, and others, such as the spouses of
coworkers, touch on your life only briefly or occasionally and probably don't expect to
be asked to help. Many cancer survivors are pleasantly surprised, though, to find that
people they thought were practically strangers pitched in and helped without being asked.
Unlike your family, friends, and coworkers, social acquaintances don't usually have the
opportunity to see you doing everyday things, and consequently they may have more
misunderstandings about what you're going through. On the other hand, people we
choose to see socially may have more in common with us than, for instance, those we
have no choice but to work with.
In general, what we can ask of social acquaintances depends on the context in which we
know them. If they're fellow Junior Leaguers or Jaycees, we might expect help, as these
groups specialize in helping others. If they're the friendly couple with season tickets next
to ours at the theater, perhaps not.
Karen Ali, MS, a caretaker of several family members with cancer, offers pragmatic
advice on being candid and concrete about the support you need:
Unfortunately, some people just do not know how to handle this kind of stress, so they run
away, or try to minimize what's going on in order to absolve themselves and pretend that
they can do nothing to help.
If you have a church family you can turn to--even if you have not been a particularly
active member--many do have some resources that might be able to assist you, and all
you have to do is ask. Sometimes the social services department of the hospital will be
able to help you contact a resource to help you with what you need.
Do you need help with the housework or other tasks of a similar nature? Try to formulate
some idea of what it is that you want done. Sometimes it is the vague "I need help" that
frightens others from volunteering to pitch in. They might not be able to commit to a
long-term project but might be able to do one specific task or job.
Also, priorities may need to be shuffled or standards lowered on some things to get you
through the tough spots. Rest when you can. The sweeping and dusting will still be there
Organizations that focus on help
Your church, local chapters of the Elks, Rotary, or Shriners, or other civic groups may be
able to offer you help ranging from transportation for treatment, to financial assistance, to
pitch-in efforts for lawn care and cooking. Moreover, an enormous collection of nonprofit
organizations exist to help you in various ways.
This fact sheet was derived from Non-Hodgkin's Lymphoma: Making Sense of Diagnosis,
Treatment and Options, by Lorraine Johnston, © 2001 by Patient-Centered Guides. For
more information, call (800) 998-9938 or see www.patientcenters.com.