What support groups, resources help you to come to terms with pan ca?

@jk77, I've got a few ideas:
You're right, Mayo Clinic hosts a monthly Zoom support on the 3rd Tuesday of every month. The next meeting is Nov 21. See more info here:
https://connect.mayoclinic.org/event/pancreatic-cancer-support-group-15/
Mayo Clinic's Cancer Education Center offers many classes and resources online as well as in person at Mayo (https://connect.mayoclinic.org/blog/cancer-education-center/tab/classes-resources/). Here are a few offerings to get you started. And @muradangie may have more to offer or can answer questions you might have:
- Laughter Yoga https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/a-dose-of-laughter-yoga/
- Stress Management for Cancer: Free online course from Mayo
https://connect.mayoclinic.org/discussion/stress-management-for-cancer-free-online-course-from-mayo/
- Videos https://connect.mayoclinic.org/blog/cancer-education-center/tab/ncsd/#ch-tab-navigation

You can also talk about the emotional side of cancer in this discussion group:
- Cancer: Managing Symptoms Support Group https://connect.mayoclinic.org/group/cancer-managing-symptoms/

I'm tagging a few others like @stageivsurvivor @markymarkfl @ncteacher @katiegrace @gamaryanne and others to add their favorites videos, courses, distractions that help them lift spirits and come to terms with living with pancreatic cancer.

@jk77, what helps you?

It can be so challenging to stay positive while facing pan can. The disease is a tough one, and all the MD appointments, chemo infusions, procedures and such really dominate your days. I haven't yet done anything re online videos. I am online a lot, though, mostly reading newspapers and various less-serious websites I enjoy--cooking, crafts, Disney related stuff and of course Mayo Connect. I read books as I can; some days I can't concentrate, but I have finished several in the last few months. I cook and bake some when I'm in the humor. I'm making crocheted potholders for my kids for Christmas; they all cook and can put these to immediate use. My spouse and I try to walk daily, which is wonderful as well.

Right now, I'm probably most excited about my latest initiative, which just started Saturday: I'm going to be a volunteer "reading buddy" for two elementary school students through a local public library branch. Some of you may recall that I couldn't finish teaching last school year because of my cancer diagnosis, and I really hated that. I promised myself that once school began and my situation was more stable, I would look for a volunteer opportunity that would allow me to help kids and put my teaching skills to use. It took a little while to track something down, but the library assignment is going to work well, I think. This will give me some teaching research and prep to do that's good for my brain and spirit, but it's not an overwhelming workload. I met my buddies yesterday, and they are absolutely adorable! After just a half-hour with each, I can see some reading skills we can work on while enjoying each other's company and sharing some books. This is going to be fun!

The websites I most frequently use for comprehensive, accurate and timely information on pancreatic cancer:

Pancreatic Cancer Action Network is the largest patient advocacy organization staffed by case managers to answer questions, provide literature and offers patient and caregiver programs, a molecular profiling service, clinical trial finder and support at PanCan.org

LetsWin PC.org offers treatment tips and articles on breaking research and clinical trials that have opened for accrual. They feature stories and short video documentaries of survivors covering all types and stages of pancreatic cancer.

The SeenaMagowitzFoundation.org is another comprehensive site with timely articles, stories and videos on survivors and arranges a surgical consultation at no charge with a leading pancreas center and renowned surgeon for patients seeking an additional opinion where there is vascular involvement and other surgeons are not willing to attempt. They also offer moderated support group meetings twice a month-one session for those recently diagnosed within 18 months and another group for survivors beyond 18 months. There are also a few regular long-term survivors that have significant experience, familiar with clinical treatment and research and serve as volunteer patient advocates for organizations involved with pancreatic cancer. This organization sponsors a yearly symposia for patients, survivors and caregivers featuring experts presenting on surgery, oncology, radiation therapy, clinical trials and opportunity to talk directly with them.

Hirschberg Foundation (pancreatic.org) is affiliated with Agi Hirschberg Center for the treatment of diseases of the Pancreas at UCLA Medical Center. Their website covers a broad aspect of information on pancreas cancers.The foundation sponsors a yearly pancreatic cancer symposium each Spring at the UCLA Brentwood campus.

Craig’s Cause Pancreatic Cancer Foundation (craigscause.ca) is a patient advocacy organization based in Canada with staff to provide assistance in navigating their healthcare. They conduct a weekly support group meeting every Monday starting at 7:00 pm ET/4:00 pm PT. The meetings are moderated by a nurse, social worker with assistance from a long-term survivor who’s professional career was in clinical research and serves as a patient advocate for several scientific organizations in the cancer space. The website has information on how to join the meetings/contact info. Its participants are from Canada and the US and occasionally has participants join in from Europe.

For those that are experiencing Exocrine Pancreas Insufficiency, the Canadian Digestive Disease Foundation has a website with a dosing calculator taking the guesswork out of optimizing the amount of pancrealipase to use for a specific meal. It covers all the Rx brands of pancrealipase. The calculator is at https://digest this.ca

@colleenyoung, thank you v much for this comprehensive list.

I haven't yet figured out how to cope with this disease, or how to try to find pleasure in the days when I feel reasonably good. I don't mean that I'm always miserable (I'm not), but the combination of feeling physically not-great plus experiencing various life stressors (money woes; dismay about further delaying my return to the workplace; dismay about being unproductive; some grief about the retirement of my longtime therapist) has made it hard for me to do more than keep my nose above water most days. And that's sort of OK, considering what the past year has ushered in.

I read parts of two newspapers most days; I read this board many days; I watch a lot of TV from other English-speaking nations; and I read a lot of advice columns online (they're my guilty pleasure).

Now that I've made it through neoadjuvant chemo and surgery, I'm eager to open my life a bit more -- hence this thread. So thank you again, and thanks also to @ncteacher and @stageivsurvivor.

You are doing fine! Those of us in the pancan world are dealing with a huge challenge. We need to allow ourselves to do whatever feels right at the moment, whether that's gardening, reading, volunteering, keeping up with work, etc., or resting and recuperating. We need to give ourselves some grace. Pancan is challenging, and we are all working hard to conquer it.

Thank you so much for posting all this information!
I’m 62, live alone, satage 4 with Mets to liver artery, veins and poss lung. I’ve only done 4 gam abraxine infusions. The problem is I live in a small town in Wisconsin and can’t drive any longer because of all the meds I’m on. Getting to be too many to count and @colleenyoung said it so well. Coming to terms with dying before even getting on SS (I’ve been saving like crazy most of my life to travel and now can’t even travel 15 min to grocery shop. Kids live 2 hours away so hard to visit with them.
I pretty much just stay hidden away crying and feeling alone and sorry for myself. Just want to stay in bed with the covers over my head worrying about all the terrible things this cancer brings and scared sh…less about dying. Just about 5 min into I’m running to bathroom so what’s the point in even trying to go out if someone invites me to come out to dinner, etc
I keep wishing I could get it together and try some of these places instead of laying here loosing about 4 lbs a week.
You nice folks that get out there, I have no idea how you manage without friends or family nearby 😭😭

Thank you so much for all that have posted on this string. We learn so much from each other because most of our oncologists have their plates FULL.
I spend every morning in my quiet place with the Lord. My words for this year are “Show Me” and He has shown me so much. Not just about this disease, but far beyond it.
My “Ven” diagram has always been family, community, business, and church. They all intersect with my faith in God. All the doctor appts, chemo, surgery recovery have put a damper into what I say yes to now and there are many things we can do! I am able to continue my real estate business full time. It keeps me engaged with people and challenges my brain to think out of the box in this crazy market (esp now!)🤣. I write notes to people who are dealing with difficult issues of all types and I find myself spending time one on one with more people who seem to need inspiration -so I find it for them and it keeps my situation in perspective. I always get a dose of fresh air each day! Lastly I am using my resources to raise awareness of this disease. Hosting a purple stride team in April in Atlanta!
Find a way to help others; it will help you more💜💜
HUGE thanks to those that post here. I learn so much. Keep the faith!!

Wow, you are an inspiration! I can't believe you're still working full time and doing so much volunteer work. That's fabulous!

Might you be able to take your travel savings and use them to move temporarily to one of the great pancan centers (for ex., Mayo in Minnesota, MSK, Hopkins), and seek aggressive treatment? @stageivsurvivor's posts are a reminder that one *can* survive -- but superb treatment is necessary. (If you're not familiar with his story, I encourage you to read his comments; start with the newest and read back for as long as you feel inclined.)

Also, please consider connecting to others via an online support group. And please talk to your doctors about an Rx to counteract depression and/or anxiety -- something that might help you gather your resources and move temporarily for better treatment, or that might at least help you feel better.

I'm so sorry that the challenges of this disease are intensified for you because of your isolation; I wish you well.

ETA: Even if you're apprehensive about going elsewhere because of bathroom issues, *please* find a way to spend time with nearby friends (and, if appropriate, family and farther-flung friends) -- connecting with people who really know you and who care about you makes a huge difference.

What a nice answer! Not being able to drive all these months(because of pain pump surgically placed), I just feel out of touch with reality.
I’d love to travel out west, San Diego or down to Florida but just can’t figure how I’d handle all that comes with traveling, let alone doing it with a walker, suitcase no rental car, diarrhea every time I eat something, on top of it trying to do it alone! Again don’t have any idea how you stage 4 folks do it, unless maybe you have someone with you to help.