When are Support Groups Helpful?

When do you know when to connect with other individuals who share your diagnosis or your situation? It's up to you.

I found a great cholangiocarcinoma (CC) support group when I was at dad's house last month. The support group is a "closed" group on Facebook, which means that only members can see and respond to messages on that group's page. As far as I can tell, the group consists of patients and caregivers (current and "after care"), although this non-denominational group also welcomes medical professionals and students.

I never sought out a support group while caregiving mom, because I felt that I was getting the answers I needed from various reliable resources. Also, once I was a full-blown caregiver, I never had time to seek support. I was too busy with mom's appointments, her medications, the tasks we had to schedule (like saline flushes for her bile duct catheter), with my own work, and with my own well-being.

Looking back, I'm not sure I could have tolerated a support group, because I was on a short fuse many times. I did check a few of those groups out, and I wasn't ready. Lighthearted entertainment was not my cup of tea during my tenure, and I sure didn't want to hear about hope when we knew we had no hope with mom's case. I also didn't want to hear about bad news when I knew the news was anything but good for us (some folks will understand this logic!).

I will say I'm more than ready for the Facebook support group now. Now, I have something to share, especially with newcomers to the group who -- on almost a daily basis -- are reporting a loved one recently diagnosed with stage four CC. I'm learning a lot about this disease from patients who have been exposed to treatments that my mother couldn't tolerate with her physical condition. I'm also learning that patients often know more than their doctors and oncologists about their conditions.

I'm somewhat sorry that I denied myself the support of a group during my mother's diagnosis and death, but I did share everything with my friends on Facebook. Believe me, I don't know what I would have done without my friends' support. And, at the time, my friends were far more substantial in their support for me than a stranger's support. Now, however...

I seem to find more support among other caregivers and CC patients than I do among my friends. I don't know why this sea change occurred after mom's death, but I'm sure a lot of this disconnect has to do with my push to finance a space of time to finish my memoir. So commercial! At the same time, I also think that friends have only so much tolerance for death and dying.

And, it's for that latter reason that I find support groups so attractive these days. There's something about a finite boundary on life that brings out the honesty, support, and love that happens nowhere else but within a support group. In that environment, I feel I can share my tears, inappropriate laughter or comments (and find immediate forgiveness), and fears.

If you feel you need a support group, seek one out. So many support groups exist for all types of cancers as well as for caregivers. I'm not sure if this link will work for the CC support group at Facebook, but give it a shot: https://www.facebook.com/groups/CHOLANGIOCARCINOMAsupportGroup (if this link doesn't work, please let me know via Facebook).

For caregivers, I recommend Caregiving.com. This is a great space for folks who are caregivers to spouses, siblings, and friends who suffer from a myriad of physical impairments. Denise will probably meet you at the door. Please tell her I sent you!

Contest!

Friday marks the beginning of a new phase in my project campaign. This time YOU can receive monetary benefits from a merit-based referral contest. This contest is designed to increase contributions to my project, and you can also win a gift credit card to use as you wish.

1. I'll provide one $100 VISA card to the person who brings in the most contributors to my campaign at any level, no matter the dollar amount. For instance, if you have 500 contributors at $1, you could win this prize for your efforts.
2. I'll provide a second $100 gift credit VISA card to the person who brings in the highest dollar amount, no matter the number of contributors. For instance, if you bring in one contributor at $1,000, you could win this prize for your efforts.
3. Finally, I'll provide a $50 gift credit card to the person who brings in the the most referrals, period. You deserve a prize for working so hard! For instance, if you bring in 550 referrals, but none of them contribute, you can still obtain this card

To learn more, visit the Contest Page on this blog (listed in right-hand column). NOTE: Only one prize per person, so at least three people must compete for all prizes to be awarded for your efforts.

Still Time to Compete...

This is a screenshot of the leader board on the dashboard on Saturday at 2pm. I didn't post on Friday, because it appeared nothing has changed over the past week except a few names and the fact that I brought in more money (and I'm not competing). So, you still have plenty of time to sign up and gain interest -- view the referral contest information and follow the rules to win by November 24th.

Memoir Progress Update

One rebuilt garden bed with new mulch!

The support I've received for this project so far has been wonderful. As of this writing, 43 individuals provided $1,184. This is enough money for me to pay expenses incurred during this campaign, to pay for an editor, and to pay for two days at a four-day poetry retreat in November with the Green River Writers to edit a few poems that are going into the memoir. I plan to get a lot done in those two days.

Next up -- paying for a month or two in seclusion to finish the memoir. Just to be perfectly clear, this time does not exclude regular work for clients. Instead, it is to finance travel to one of several writers' retreats (if I'm chosen), or to pay for a getaway from the chaos at home to have quiet time to finish my research and writing. My family WANTS me to leave to finish this project, so help them out! =)

In other news:

• This is my last week at dad's house. I've finished weeding and separating the flowers in mom's garden beds (all ten of them), weeded along the fence and around the trees, and had mulch delivered for the front beds. The mulch for the back beds is arriving after I leave. I used mom's new garden gloves that she purchased before she died and never used, and I poked holes in the ends of the fingers. Dad said, "I'm sure she won't mind." Despite my initial fears over tackling my mother's gardens, I think I did fine by her.
• Packing to return home includes items from around the house that dad wants me to sell. I have to put on my "impersonal" persona when conducting this work, because I feel as though I'm selling memories. On the other hand, it feels great to downsize, and I'm conducting this activity on the homefront as well so I can relieve my daughter from this task upon my death. I never realized I inherited my "hoarder gene" from mom. I've learned since mom's death how to hide that hoarding (in drawers, closets, and the attic!). I'll post more items to my Etsy shop (GoinOriginals) next week. Sending a "thank you" to my new customers at that venue!
• It appears no one has really taken me up on the contest challenge yet. Too bad! But, there's still time to compete (until November 24th!).
• It appears that folks are taking me up on my $1 birthday wish challenge at the Cancer, Caregiving, Contentious Love Indiegogo site! Wonderful! Those dollar bills add up! (hint for those who want to compete in the previously mentioned challenge -- I'm trying to help you!)
• Thanks again to Denise at Caregiving.com for offering a new space to blog about my caregiving adventures with dad. Latest post: My Fears About Leaving Dad Alone.

Since I'm busy packing and traveling over the next two days, I won't be posting anything here until Friday. Be good, take care, and be happy if you can. <3