Cancer Support Groups--What's in it for you?

Recently I have been thinking about the role of support groups.  Many of my friends diagnosed with cancer, have chosen not to seek out the company of others in their situation.  I imagine that they have a variety of reasons--but I wonder if they are missing out on an amazing experience.  

I wanted to know what type of impact participating in a support group could have on your life and your experience of living with cancer.  I took my questions to my friend Mary Ann.  From past conversations I knew how much she valued the relationships she established with the individuals in her support group.  She was gracious enough to let me interview her about the role her support group played, and continues to play, in her life. 

The first thing to know about support groups is that they rigorously protect their members' privacy.  Everything that Mary Ann shared with me was presented with the clear understanding that no identifying information could or should be used.  

Here are some excerpts from a number of support group conversations:

"Welcome to the club!  Not the place any of us wanted to be...but here we are.  Please let us know how things went as soon as you are able, we'll be watching for your message."

"Just because an insurance company denies something, if you have the energy it is always good to call them directly and ask to speak to a manager or supervisor and ask why it was denied.  Perhaps it was just an unwritten rule that they have.  But in my case, it did work."

"Hi, I don't know if this will get back to you before your surgery, but please know that you will be in my meditations to send healing energy your way."

"I know how overwhelming all this can be to you but I want  to add one more thing for you to consider! :)  If your surgeon talks about doing an axillary dissection you might want to find someone who will just remove and check the sentinal nodes first.  The chances of getting lymphedema are greatly reduced (although some women still get it).  I think most surgeons are now doing sentinel node biopsies, but it's still a fairly new technique, only a few years old I think."

I quickly came to see why Mary Ann felt that her support group was a wonderful and powerful resource.

Joining an on-line support group has several advantages.  Not having to worry about how you look was the first thing that came to my mind.  Bad hair day, or no hair day, all your clothes are dirty--no matter, just get on- line and type.  

At the start of treatment it's normal to be exhausted and overwhelmed by all changes in your life.  You may be in physical pain and you are certainly in emotional turmoil.  The thought of getting ready to go to one more appointment can be unthinkable.  Staying home and still being able to have access to others in your situation can conserve much needed emotional and physical energy.  

Nights can be long, bringing dark thoughts -- that's when reaching out, via the internet can be therapeutic.  If you want to "talk" at 3:00 AM you can.

Someone else may also be available at the same time, but maybe not.  You can leave your message and check back later to find a thoughtful response.  

Being honest and frank over the internet is easier for some people than meeting face to face.  When you are physically with a group of people you feel compelled to behave in a certain way. It isn't acceptable to fall to pieces in public--even if that is the only logical reaction to all the horrendous things that have been happening.  You may even deny or bury emotions in order to keep yourself "together" in front of others.   

Over the internet you are freer to say, "I'm coming undone.  I can't do this, I'm not strong enough.  I hate that this is happening to me and my family." You can say uncomplimentary things about your spouse or children.  You don't have to be embarrassed about tears or a runny nose.  

And it's good for the other people in the group too--they aren't distracted or put off by your tone or your anger.  They can focus on your words.  They can take the time to collect their own thoughts and compose their own words to help you.  

It's amazing how close you can get to others when you are distant in physical location.

Joining an on-line support group provides a lot of freedom, but that doesn't mean that there aren't rules of conduct. For one thing, as a member you need to live up to the name--you need to provide support.  Mary Anne told me that her group "... is always on her side."   She can count on that fact and it is a huge comfort.  Members of a support group treat each other with great sensitivity and respect.  Group members are dedicated to maintaining a non-judgmental enviroment.  

Some women decide to remain active in their group long after their treatment has ended.  They serve as the voice of experience, welcoming new members and reassuring them that they will get through the treatment.

Helping others is a powerful and direct way of continuing to help yourself heal and grow.  Guiding someone through the tangle of integrating cancer into their life without letting it take over their life is a wonderful gift--for both of you.   Helping someone find a balance is a great way to maintain yours. 

Remaining in a support group also provides an unofficial type of "after care." Many people discover that instead of being relieved and carefree, after cancer treatments are over, they are anxious and fearful.  In fact, doctors and survivors alike, are reporting symptoms of post traumatic stress syndrome.  Life never completely goes back to what was once "normal."  

While you were in treatment you were constantly monitored by doctors, nurses and  other health professionals.  Regularly scheduled  tests, scans and blood work told you how you were doing.  Life was arranged around your treatment schedule.  Then, suddenly, it seems, your treatment is finished.   The day that you thought would never come did arrive and you may be shocked to find that in place of joy and relief, your are experiencing sadness. 

You may feel abandoned and vulnerable.  "After treatment letdown" is a common subject among group members.  It's soothing to talk with others women who experience the same conflicting emotions.  Knowing that others went through this same conflict is reassuring--you aren't crazy.  Your support group members will tell you that what you are feeling is all part of the process.  

Finding your "new normal" takes some time.  Continuing to have the support and comfort of your group can be a lifeline.   

How do you find a support group?  

I asked several people how they located their support group--here's what they said:

*  ask members of your health care team for suggestions

*  ask hospital social workers for referrals

*  family member or friends may know someone you can talk with

   

*  religious groups may be able to provide information

*  ask people you meet in waiting rooms, labs, infusion centers if they 

  use support groups and how they found them

*  when searching the internet for information on your type of cancer, 

   see if any support groups are mentioned

*  ask your computer-savvy children to help you locate a few on-line 

   support groups.  

You may not find a group that works for you or you may find that you don't work well in a group.  But during the search process you are likely to learn some important things about yourself and how you want to manage your cancer.  Joining a support group can be one of the best things that you do for yourself.

"I so wish I had found this group earlier, you women are incredible!  Not only the support but the level of knowledge is unbelievable.  I am getting so much information that I wish that I had before...Thanks to you all I have a list of questions to bring to my oncologist.  I am in awe of all of you."

                      --support group member

Thanks to Mary Ann and her support group for sharing their posts.  

A Family Affair

In July, I wrote a story about my daughter Lauren donating her hair to "Beautiful Lengths." (Check out "Putting Our Heads Together" July 29, 2008.) In the story I credited Hannah, my niece with giving us the idea to make the donation.  Recently I asked Hannah to write to my blog and share her story--and here is Hannah's wonderful story.  

(And --thanks Hannah for the compliment on the website.  I will pass the kind words on to your cousin Jessica--the Chemossentials Webmaster.  It really is a family affair.)

  

I wanted to donate my hair because I had a lot of thick red hair and I wanted to give it to a charity so that someone else could enjoy my hair who needed it.  

After I donated my hair I was really happy that I gave it to charity.   It felt like I gave someone something they had wanted for almost their entire life.  

During the process I felt squirmy because I could barely remember the last time my hair was that short. I knew that I would not feel so hot in the summer and someone else would have something they had wanted really bad, like Christmas all over again.

After I donated my hair my friends thought really hard about if they wanted to do it too or not.  I told them about how I felt and if they did it they would feel the same way.  4 of my friends thought it was a great idea so they did it too.

Hannah

P.S. I also really like your website.  I like how you made it.  

How to Help Organize Medical Appointments

It is essential for someone going through cancer treatments to have a family member or friend accompany them on each visit.  Here's some practical advice on how to faciliate information gathering and organizing for office visits, chemotherapy sessions and radiation appointments.  

Before volunteering to help ask yourself:

• Do I have the time available to make this ongoing commitment?
• Can I be helpful or am I too emotionally involved?
• My friend or relative has an absolute right to privacy--can I be discreet and respectful?
• Can I be an assertive advocate?
• Can I be counted on to be on time for appointments, especially if I offer to drive?

Define your role:

• In addition to taking notes regarding the important information covered during the appointment, is it alright for you to raise questions or ask for clarifications of things that you don't understand?  
• Will you be in charge of organizing the notebook--putting lab reports etc into  the appropriate spot, keeping track of prescriptions, all receipts?
• Will you be in charge of the parking ramp ticket? 
• Will you help make appointments?

Basic supplies:

• Notebook--a 2-3 inch three ring binder 
• Pockets or folders that fit into the binder to hold lab reports  and scans
• Business card holder-- a page that holds 10-12 cards is usually adequate
• Bring 2-3 pens and highlighters 
• Post-it Notes
• An attractive and functional bag to carry all of this--think about a Chemossentials Bag

What to bring to each appointment:

• Insurance cards--I suggest that you make at least 5 photocopies of all insurance cards--some medical facilities are very well integrated, others aren't, so having this information available is convenient.  I've also found that handing over a photocopy eliminates the possibility that you will lose track of your important cards.
• List of all medications--include dosage, MD prescribing, pharmacy phone numbers and why you are taking the drug--have 5 copies of this information too.
• List of all vitamins and supplements you are taking.
• List of all allergies to medications.
• List of past surgeries and hospitalizations.
• List relatives who have had cancer, include type of cancer and age of onset 
• List of important phone numbers--doctors, dentists, neighbors, children's schools--any one you might need to contact.
• Snacks and drinks
• Cell phone and portable charger
• A sweater--medical centers are typically cold.  

Making the appointment:

• It is likely that the first appointment was already scheduled, when making future appointments try to schedule them in person before you leave.
• Schedule lab appointments and other tests and scans the same way.
• If you  are seeking a SECOND OPINION --and you really should to that--ask your doctor's office for help in setting up the appointment--the same holds true for appointments with other specialists.

The day before the appointment:

• Call your friend and confirm the time and location.
• Be sure you have the directions, know where to park and how much it is likely to cost.
• Review your role.
• Help your friend make a list of questions, concerns, clarifications that need to be addressed.  Talk about asking for a second opinion--this is a touchy topic for many people and this may be place where you can take over and ease the burden.
• Bring some things that can distract you both while you wait.

During the appointment:

• Record information in the notebook, put all lab reports, test results and scans into notebook
• Collect business cards of MDs, nurses, business and clinic managers etc and organize in notebook
• Ask about how to get help after hours--who to call and when to go to urgent care or the emergency room
• Ask if there is a nurse manage or someone to call with any and all questions

Follow-up:

• Set up next appointment
• Schedule tests and labs
• Get prescriptions filled 
• Use system to save receipts and drug information inserts

You will likely decide that there are other things that you need to and can do to help organize a medial appointment.  The information you record and organize will be used to make vital treatment decisions. Setting up a system that is easy for your family member or friend to access, understand and review is crucial.  

Here's another thing to consider-- being there during this time can also be a wonderful way to get closer to your friend or family member. Be creative and insert as much fun and joy into the process as you can.   Don't overlook this unique opportunity.