Most hospitals – even local and regional medical centers which are not affiliated with teaching centers – have at least one or two cancer support groups. These are for the more prevalent cancers like lung, breast, colon or prostate. Few hospitals have support groups for liver cancers and fewer still for cholangiocarcinoma. So what is a cholangiocarcinoma patient or family member to do?
Well, there are several options. First, you can try to join a general Cancer group if one exists. If it is a larger Regional Hospital, they may have a GI Cancer or Liver Cancer Group for all types of liver CA (Hepatocellular Cancer, Cholangio, etc.) or a PanCan group for Pancreatic Cancer; While not the same, many of the chemotherapy regimens and surgical techniques used in treating Pancreatic Cancer are similar to those employed in treating cholangiocarcinoma, so there are some similarities there.
An alternative option is to form your own Support Group. This may sound like a daunting task but it is really do-able and just takes some leg-work on your part. Let me address a few FAQs to start with:
What exactly is a Support Group? A Support Group is a small gathering of patients and caregivers who share common experience with this disease; People who truly understand what you’re going through and can relate. A support group is a judgment-free forum to discuss disease-related issues with peers. Anything is open for discussion and humor is necessary to deal with some of the serious aspects of this disease. A support group is an opportunity to “vent” feelings. It’s also an opportunity to make new friends who share the same disease. No one knows better what you’re going through than fellow patients and caregivers! Be prepared to hear different points of view about the disease, cancer in general, how to deal with it, the role (or not) of religion. Be tolerant of other’s views and try to understand that they are dealing with this in their own way that is right for them.
Why form a Support Group? While on-line discussion boards and chat rooms are very helpful, meeting face to face with others in a like situation can’t be replicated on-line. I cannot stress this enough – the personal interaction is much more robust. Support groups allow patients and/or caregivers to vent with others who truly understand what they are going through; No one can truly walk in your shoes but other patients and caregivers dealing with similar clinical situations can come close to understanding your journey. The presence of a social worker is also very helpful in asking relevant questions and helping the group to stay on task, in the event someone ventures off to left field on a tangent.
Who will help me establish the group? So the first thing you’ll want to do is to enlist the aid of one of the social workers who works with your oncology team. If your not familiar with who that is, be sure and ask your physician or advanced practitioner (RNP or PA) and they can refer you. If this is the case, I would let the physician know what you want to do and enlist their support, then ask the physician or RNP/PA to introduce you to the social worker. It doesn’t hurt to have the clinicians in your corner when approaching the social worker. Most major centers have a social worker or counselor assigned to cover patients for multiple physicians. Let them know you will help to coordinate this. This is key in enlisting their assistance as chances are, they are moderating several other groups & are already very busy – so your offer to help will be welcomed. Be prepared to help with getting the word out and doing some of the leg work to prepare for the meeting. You’ll be taking some of these routine tasks off the plate of the social worker, but don’t worry – you can handle it!
Where do I have our Support Group Meeting? Most hospitals and teaching institutions have conference rooms for use by groups. These rooms may have to be reserved weeks or even months in advance and may only be reserved by a staff member, so you’ll need some assistance from the social worker or physician’s staff here. In the event that you wish to have the meeting after normal daytime business hours, you’ll want to make sure that the building the conference room is in is open to the public without key access after regular business hours. You should also ask if the building and parking area or garage is well-lit and has security if the meetings will be held at night. If no conference room is available, alternatives are local restaurants or coffee shops which have a private room. I stress the importance of using a private room as support group meetings can sometimes be emotional events and it is better for participants if there is a degree of privacy offered by a separate room than meeting in the open area of a restaurant.
How often do we hold a Support Group meeting? Holding a meeting once a month is usually frequent enough. The social worker will probably be running other support groups (lung, breast, colon) so be cognizant of their schedule, especially if it is after business hours. They have a life too and don’t want to spend every night after work running a group no matter how noble the cause. Once you get a few meetings going, members can always meet up more frequently for coffee, etc. if they desire outside the normal meeting time.
How do I let others know about the Support Group Meeting? If working with a social worker, they will probably have to make the initial contact to patients (HIPAA) but you can assist by drafting email verbiage for the social worker to use – again not a big deal but it takes something off of their plate. Ask the social worker if they can recommend contacts at other centers for you to notify; Most centers “share” patients for the less common or “orphan disease” support groups. Cholangio patients definitely fit this description. Also – other centers will welcome the support. If you do send out emails to patients, send to yourself and “Blind CC” the others for privacy reasons.
Some general group considerations: Here are some important considerations courtesy of Geret N. Giles, Ph.D., Pleasant Grove, UT:
Commit to the confidentiality of the group. In order for significant work to be done in a support group, members must have confidence that what they share will be respected and not discussed outside of the group.
Help the group start and end on time. Group members have placed other commitments and obligations aside to participate in the group and their time is valuable.
Remember that everyone in the group deserves compassion and respect. All group members have certain rights in the group:
- Right to speak/remain silent
- Right to speak without interruption (including side conversations)
- Right to ask a question/refuse to answer
- Right to protection when absent from the group
Listen first, speak second. There’s a reason why we have two ears and only one mouth.
Give others the opportunity to speak. Each group member must monitor themselves to avoid monopolizing the group’s time.
Speak for yourself. Each group member must speak in a way that takes ownership of what they think and feel and allow for the possibility that they may be the only one who thinks or feels that way—and that’s OK.
Share experiences and feelings rather than advice. The power of the group comes from members sharing their experiences and feelings as fellow travelers on life’s path rather than as experts who know more than everyone else.
Signage. Ask if the center allows you to post signage up in advance of the meeting. If it does, make 8.5” X 11” notices of meeting details and post them in areas where patients congregate. Be sure and check with the social worker in advance as you may have to have an official stamp on the signs so the custodial workers do not remove them prematurely. Areas to consider posting are:
- Infusion centers
- Waiting areas
- Hallways & elevators
Ask the clinic nurses to post in the exam rooms used by the GE Oncologists. Don’t worry about getting too fancy – you want people to be able to easily read the notice in a hurry. Give the basics – What the group is, how often they meet, what time and where.
Food. Depending on when the meeting is to be held, you may want to ask if you can bring food to the meeting. Donuts or bagels, fresh fruit and coffee, bottled water and soda are a nice touch. The Social Work team may have a budget for this and can provide. If not, be willing to pitch in if food is important. I feel that it’s okay once you start a group and learn the dynamics to ask others to pitch in to help defray costs. Perhaps you can get different sponsors for each meeting like the American Cancer Society chapter or local restaurants, coffee shops. Think outside the box on this one! NOTE: Keep in mind that warm or very odoriferous foods may have a negative effect on patients undergoing chemo, so be aware of that before bringing a hot steaming bowl of tomato bisque or Limburger sandwiches! And obviously don’t forget napkins, cups, utensils, sugar, sugar substitute, creamer, etc.
Location. I recommend you check out conference room or location ahead of time. I can’t stress this enough – it avoids any unpleasant surprises at the meeting itself. Are the any special considerations about the room like location, is it typically too cold or too hot? Are there enough chairs? If you were to need more, who would you contact to get them? Also include directions in your email and on notices – don’t assume everyone knows their way around the center as they may be coming from other facilities, so the more specific the better. Don’t forget to include directions on where to park.
Getting the word out. So if you’re not sure of the other cancer centers in your area, use Google to search for other facilities in the area and you’ll find contact information for the oncology department. Often centers will have contact information for other support groups posted on-line and this may be a good place to start. I have found that Email followed up by a phone call is best way to contact other centers. Don’t forget to reach out to other groups that can help get the word out: American Cancer Society local chapters, Cancer Coalitions, Liver Cancer groups, Cholangiocarcinoma Foundation, local cancer discussion boards and relevant blog sites and if you are comfortable with sharing the information you can post notices on social media networks like Facebook, MySpace, Twitter, etc.
I hope that this has been helpful. If you haven’t got a local support group in your area you should now have enough to start your own. I welcome your feedback and suggestions, especially if I have left anything out. Also – if you do end up setting up a Support Group in your area, please share your experience with me and my readers. I will eventually post a separate page on the website listing support groups.