Q. Are there support groups geared towards grandparents of a child with cancer?
While there may not be a local support group geared specifically toward grandparents of children with cancer, it is probably worth inquiring about caregiver support groups at your grandchild’s treatment center. At CancerCare, a grandparent whose grandchild has been diagnosed with cancer is eligible for any of our caregiving groups, whether in-person, over the telephone or online.
Like other caregivers, grandparents are likely to have a hard time adjusting to their grandchild’s diagnosis. You may need a place to express intense emotions, including fear, anger, sadness or grief in the presence of people who have had a similar experience. A support group can also be a place to exchange helpful information on coping and various other means of supporting oneself and one’s family.
Whether or not you find an accessible support group that specifically matches your demographic, it can be very helpful to connect with other people who care for a person with cancer. If there are no support groups in your area, perhaps you can organize an informal group that meets at a church or community senior center.
This booklet by the British organization The Children’s Cancer and Leukaemia Group, is a useful guide to grandparents of young children with cancer, and includes information on various ways support yourself, your children and your grandchildren in reacting and adjusting to your grandchild’s diagnosis.
Q. I'd like to organize a support group for cancer survivors and people facing a cancer diagnosis. What do I need to do to get one started?
Support group has become a much broader term than many of us realize. What type of support group do you intend to start? At CancerCare, we offer three modalities of support group: including in-person, which is the format that most of us think of when we think of a support group; telephone, which is more like a weekly conference call that is moderated by an oncology social worker; and on-line, which is a message board format. Each modality has different features as well as limitations.
After deciding what modality of group will be most beneficial to your potential group members, you will also want to determine the content, structure and policies. Is your group about members sharing their experiences? Do you want an educational component with guest speakers? How often are you going to meet and where? Who is eligible to participate in the group? Who is going to moderate the group? What are the rules for discussion and maintaining privacy? What mechanisms are in place to enforce your group’s guidelines?
Familiarize yourself with existing groups. Local medical centers often offer support groups that are open to the community. Contact national advocacy organizations for specific cancer diagnoses, for example Us Too for prostate cancer, to find out if they have a chapter where you live. Cancer Support Community has a good overview of the process of creating a support group from scratch.
Q. What are support groups and how can they help me? How do I know if they're right for me?
A cancer diagnosis can be very isolating. Regardless of whether you are a patient or a caregiver, you can be immersed in reacting and adjusting to various aspects of the disease. The responsibility to find, manage and pay for care can be hugely overwhelming. It’s hard to feel hopeful, or have any sense of confidence in your ability to cope or make appropriate decisions, if you are feeling small and powerless and very much alone in the experience.
That’s where a support group can be helpful. It provides a chance to meet and interact with other people who can understand your experience. While friends and family members might be uncomfortable, maybe feeling useless or scared, not knowing what to say or do, the members of the support group, with the guidance of a trained moderator, can be there with you in your process.
In addition to lessoning one’s sense of isolation, support groups can be a source of valuable information. Not surprisingly, members find that sharing resources and coping skills can be highly rewarding, whether on the giving or the receiving end of the transaction. Topics often include where to find reliable medical information, how to communicate with doctors, challenges of treatment and coping techniques. Much of one’s experience in a support group depends on the chemistry of who is in the group and how it is moderated. One thing common to most groups is the potential for strong emotional expression, which can be uncomfortable for some people. Other factors to consider are how you feel sharing things about yourself in a group of people, and whether or not you can meet any attendance guidelines the group might have.
Bottom line? If you are feeling alone and needing information and emotional support, a group might be a valuable way of connecting with people to help you cope with your situation. If you have questions, reach out to the moderator so you can get the information to make an informed decision.
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Answers from Other Experts About Support Groups
Q. My 24-year-old son was recently diagnosed with cancer and I think it would be a good idea for him to join a support group. How do I convince him?
As a caregiver, you may feel that your son should join a support group to help him navigate the challenges he may face in regards to his diagnosis and treatment. The difficult part of all of this is that your son must be able to make that decision on his own. As a young adult facing cancer, he may need to understand what his cancer diagnosis and treatment will look like before he is able to give and get support from a group. Managing doctor’s appointments and scheduling treatments can be taxing, however addressing the benefits he may find in a support group is the first step in educating him about how a support group can help.
Support groups can offer a network of comfort and encouragement, a place of unbiased support and an environment that a young adult does not have to explain what he or she is going through because the other group members will understand. CancerCare offers a face-to-face Young Adult Patient Support Group for anyone located in the New York City area. In addition, we offer several patient online support groups. Your son may also want to reach out to Stupid Cancer, an organization that addresses several young adult cancer issues through advocacy, support and more.
As a caregiver, you may want to look into services for yourself. You can contact CancerCare’s Hopeline at 800-813-HOPE (4673) to learn more about our services for caregivers. In addition, you may find some of our publications helpful in navigating your new role as a caregiver.
Q. I am 28 years old and it seems like I'm the only one my age with cancer. Is there anyone else like me out there?
Hearing that you have been diagnosed with cancer as a young adult can be overwhelming and isolating, however you are not alone in this. The answer to your question is yes, there are other people out there like you. There are several organizations that can help you connect with other people your age who have been diagnosed with cancer. At CancerCare, we offer services for young adults who have been diagnosed with cancer through individual counseling, either face-to-face or by phone. We also offer a Young Adult Patient Support Group for anyone between the ages of 20 to 39 who is located in the New York City area.
These organizations specialize in providing support and services to young adults with cancer and might be helpful as well:
Q. My dad was diagnosed with cancer last month. He and my mother live in another state, and I have a family of my own so I can't be there to help them out on a daily basis. What can I do to support them from far away?
Being a “long distance” caregiver is a unique experience that can be especially challenging. Working to find balance between your own needs and the needs of a loved one with cancer can feel overwhelming for anyone in the caregiver role. But remember, there are many ways you can be supportive and involved in your loved one’s care regardless of the distance between you.
Offering emotional support is one of the most helpful things that you can do for your loved one. Simply checking in and letting your dad know that you are thinking him can go a long way; call, email, Skype, send a card or visit when you can. Those reminders not only show that you care, but may also leave you feeling more connected.
You can also help your parents with day-to-day tasks like managing bills, paperwork and getting organized. Similarly, you can help them navigate the medical system. Dealing with insurance companies, remembering doctors’ appointments and accessing resources can be overwhelming. You can help your family with this by taking on some of the responsibility, communicating with their doctors and nurses, and staying informed. This can alleviate some of the practical challenges for them, while keeping you in the loop.
There are also programs such as My Cancer Circle which exist to help caregivers easily enlist additional support. This online forum creates a sense of community that helps the caregiver, but also ensures that their loved ones needs are met. Family, friends and community members are often looking for ways to help: My Cancer Circle allows them to sign up for specific tasks, like cooking meals or providing transportation, which can help them feel useful and give you some respite and comfort in knowing that these needs are covered.
And lastly, it’s important that you take good care of yourself and your family. Know that there is support available to you, too. CancerCare offers free counseling and support groups that specifically address the needs of caregivers. We offer those supportive services in person, over the phone and online. These services can help you to take care of yourself and your needs, and put you in touch with other caregivers who can relate. This support can be a comforting and powerful experience, so please call us at 800-813-4673 for more information.
Q. I'd like more information about how to help a close friend being treated for cancer. I'm also wondering if a support group could help me too?
One of the most powerful ways to help support a friend with cancer is to be emotionally available. Providing a listening ear and an openness to talk about even the most difficult of topics can provide your friend with a real sense of comfort and give them a safe place to share whatever is on his or her mind. Know that you don’t always have to know exactly what to say; simply being present and supportive goes a long way.
Offering specific tasks may help your friend to know exactly what you can provide and when. Caregivers can be helpful in day-to-day chores like laundry and transportation, and can also help coordinate medical appointments, get to know the medical team and advocate for their loved one’s needs both health-related and otherwise. CancerCare’s publication Caregiving for Your Loved One With Cancer offers more information about how to be helpful.
Many caregivers find that support groups are helpful as they give you a space to process your own feelings and get support and insight from others who can relate. Support groups often provide practical tips on managing the tasks of caregiving, help in finding balance between caring for yourself and a loved one, and can provide a powerful level of camaraderie. Seeking support by connecting with a support group or counseling can be a healthy outlet that many caregivers appreciate and learn from. CancerCare offers free counseling and support groups for caregivers.
Q. I've finished treatment and now I feel like I'm on my own. Are there things I should be doing?
Finishing cancer treatment often brings mixed feelings. A sense of relief and feelings of accomplishment are normal; so, too, is uncertainty about the future. Your instinct to prepare in some way for your survivorship is a good one. Here are some steps you can take to keep both your mind and your body healthy as you continue to work with your medical team.
Ask your doctor for a Treatment Summary. This should include:
- Your type(s) of cancer with the date and stage at diagnosis
- Types of treatment received (surgery, chemotherapy drugs, radiation doses and tests performed)
- Complications experienced (side effects, transfusions, hospitalizations)
- Other services used (physical therapy, acupuncture, herbal)
Discuss with your doctor what your Follow-Up Plan will be. This should include:
- Future schedule of visits (time and date)
- Who will deliver follow-up care (and where)
- Tests that will be done and why (surveillance and preventative)
- Assessment and treatment for long- or late-term effects (e.g., lymphedema, depression, pain)
- Evaluation of current health behaviors and promotion of healthy life style
There are great resources available that can help you organize all of the above information. The Lance Armstrong Foundation (LAF) has developed worksheets and a Survivorship Notebook. The National Coalition for Cancer Survivorship (NCCS) provides information about Living Beyond Cancer. And for childhood cancer survivors, the National Children’s Cancer Society offers information in managing long-term effects from treatment.
You mentioned feeling “on your own” now that your treatment is complete. This is a common feeling when treatment ends, and it’s good to know about the different types of support available to you:
- Professional support provides you with information, resources and counseling
- Peer-to-Peer support reduces your sense of isolation and helps you connect with others who share similar concerns
Finally, you might find it useful to listen to these Connect® Education Workshops:
Q. I've been trying to get back to normal after ending treatment, but I'm having some trouble. Everyone is happy that I'm back to work, but I'm not sure I am. Why am I feeling this way and what should I do?
With the end of treatment often comes the expectation that it’s time for celebration, and for things to go back to how they used to be. Yet, it’s common for many people to feel lost, uncertain and confused about how to move forward. Friends and family usually mean well, but they might not be fully aware of the feelings that can surface after treatment is over.
Often times after treatment ends, people find themselves reevaluating their lives. This could mean reassessing relationships or professional goals, and discovering new ways of finding meaning and fulfillment. Moreover, you might not be fully ready to be back to work, whether emotionally or physically.
Newly diagnosed patients can be so busy learning about their diagnosis, working with their medical team, and going through treatment, that the emotional impact of the diagnosis is not fully felt until treatment has ended. Understanding what life after cancer means to you can take time. This process may involve reflecting on what you’ve been through, identifying changes you might want to make in your life and recognizing what you’ve learned about yourself.
Remember that support groups are not only for people in active treatment. You might find the feelings you’re having right now are better understood by people who’ve “been there” and are currently facing similar issues such as fear of recurrence, living with uncertainty, lingering side effects, and going back to work. You might also find individual counseling helpful.
If you have concerns about how your feelings, both emotional and physical, are affecting your daily life, speak with your doctor or a counselor for support and additional guidance.
Q. What are the different types of online groups I can join?
Just like support groups that meet face-to-face, there are several different kinds of support groups that “meet” in cyberspace:
Chat Group – In online chat, the conversation takes place in real-time, which means that when you type in a message, the other members of the group see it instantly and can respond. A chat group is usually held at a specific time and day.
Listserv – This kind of group allows its members to email each other with questions and comments. Because emails are automatically sent to everyone on the list, the number of messages you receive each day can sometimes be high.
Message board – CancerCare offers this type of support group, which features a specific online website, accessible only to members, 24 hours a day, seven days a week, where people can write comments and questions, and read and respond to others members. A message board is more flexible, as members can post whenever it’s most convenient for them.
Because participating in an online group is anonymous, some people find it a bit impersonal and prefer meeting face-to-face. Other people may prefer the anonymity and feel more at ease sharing with others.
Q. I'm worried that a few side effects from my cancer treatment won't go away. Do you know how long they might last?
Experiencing lingering side effects after cancer treatment is over is common. These side effects can be especially frustrating when you expect to feel better as soon as treatment is over. Most side effects gradually lessen with time as your body recovers from treatment. Share your concerns and questions about continuing side effects with your medical team and what can be done to address them. I’d recommend keeping a detailed daily log of the side effects you are experiencing—this makes it easier to report details to your doctor. Our Connect® Education Workshop, Communicating with Your Health Care Team After Treatment: Making the Most of Your Visit can help you prepare for your appointments.
Connecting with others in a support group for people who are post-treatment can be helpful. A support group is a place to share tips and ways of coping with other survivors who might be experiencing similar lingering side effects. We offer support groups over the telephone, online and in person (New York City area). You can also speak with a social worker who will locate groups in your area.
Finally, read our publications to learn ways to cope with side effects.