A diagnosis of cancer at any stage, and particularly at an advanced stage, has a landscape of uncertainty. There are few answers, and of those, even fewer that are optimistic, making coping an alternating course of acceptance and denial. For me, then, it is a matter of having support that allows me to express myself along that course, no matter where I happen to land on a particular day. The bottom line is that we negotiate this course not alone but with others.
How do you select that support?
Most of us have a caregiver or a primary support person. That person has what can be a daunting task of helping us, and, even more daunting if that someone is a life partner, parent, sibling or friend, or someone to whom we are emotionally close. It is important, then, that we have other support in whom we can confide and with whom we can share the latest reports from our doctors. This person is someone with whom you don’t need to put on the happy face; it is someone with whom you can share your fear and other uncertainty and know that they support you. You may find someone who, at first, thinks they can do it, only to find out the emotional demand is higher than they’d expected. It’s best to find someone new to fill that role and to move on. Avoid asking why it didn’t work; sometimes there are no answers.
Another source of support is from the medical center or hospital where you are being treated. Most places have a variety of support groups that meet on a regular basis. These groups typically have leadership from the social workers or counselors that work or volunteer for the oncology department. One big advantage with groups is that you not only meet with the group regularly and get to know the people in the group, but you can also develop relationships with one or some of the members outside the group. Of course, the disadvantage is that meetings may occur at times that don’t work with your schedule.
Some medical centers and hospitals also offer some kind of a mentor or buddy system where you sign up to be connected with a current or past patient with a similar diagnosis. This is a one-on-one relationship, sometimes one that you maintain only by phone but can also include private meetings with only the two of you. This is a relationship, of course, defined by the two of you and can be most satisfying for women who avoid groups.
Some independent groups that support cancer patient groups exist in various geographical regions. The Wellness Community is one, for example, that sets up educational and social functions for their members. This is a great option for both you and your spouse to attend functions together and can offer support for husbands who avoid support groups specifically for them.
Finally, the Internet offers a variety of support mechanisms. Most major breast cancer sites (see my links) plus the American Cancer Society have a variety of online groups that join us through cyberspace. When we learned of my mom’s diagnosis of colon cancer in 1996, it was the first time I sought information online for such a personal reason. It amazed me then that I developed strong relationships with people online whom I’d never meet. It was one of the richest experiences I could have imagined. A distinct advantage of online groups is they are available 24/7.
As with any other decision for health care in our life, be sure to look at the reputation of the sponsoring group before joining. The Internet offers great opportunities to research information and to reach out to others to communicate, but it’s often interspersed with a lot of inaccurate, misleading and fraudulent information.
Don’t overlook family members or good friends who are already part of your life. Some of them will want to support you in whatever way you need, and it’s always comforting when you can rely on people whom you already know. You will often be surprised at how many people are in your midst who are supportive and caring. Now is not the time to ostracize yourself.
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