1. < Pancreatic Cancer

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

Posted by jk77 @jk77, Oct 30, 2023

Hi, and thank you for taking time to reply.

I see a thread from July about Zoom-based support groups; I'll look into those. If anyone has tried such a group and would want to share any info (ex.: helpful? not so much? best way to proceed?), I'd be glad to receive it.

Also, if anyone is inclined to share other tips -- vids on YT, self-help books on coming to terms with this disease, trying to stay positive, etc. -- I'd be grateful.

Thanks very much, and take care.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

gamaryanne | @gamaryanne | Nov 10, 2023

We all have different challenges. Has many have said, people are carrying on with this disease but good healthcare is essential. Some of your issues should have antidotes (?) from a good doctor. Like the bathroom issue. I do find that the nurses are my best go-to with questions because they hear all of our complaints in the infusion rooms. If you can’t call them directly, pls do call your onco’s nurse. You should not be this uncomfortable.

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gamaryanne | @gamaryanne | Nov 10, 2023

Wups! I posted a reply to you elsewhere.
Call your nurses! They hear our complaints and should have remedies to suggest. Esp. On bathroom issue. You should not feel like a hostage in your home.

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gamaryanne | @gamaryanne | Nov 10, 2023
In reply to @ncteacher "Wow, you are an inspiration! I can't believe you're still working full time and doing so..." + (show)
@ncteacher

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

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@ncteacher i wish I had the patience to do what you are doing. Anything to help the generations coming behind us is such a gift. And most especially with their education. THANK YOU for pouring into them.

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lilliejane2 | @lilliejane2 | Nov 10, 2023
In reply to @jk77 "@colleenyoung, thank you v much for this comprehensive list. I haven't yet figured out how to..." + (show)
@jk77

@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.

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Sometimes just keeping your head above water is all you CAN do. Pan Can itself is so very tough, and the chemo is also so very tough. I am on 5FU
Every other week. On the chemo weeks, all I can do is rest..mostly in bed ..with the TV on. Try to keep it on shows that are sweet and uplifting. During chemo week, my focus is staying 1 step ahead of nausea if I can, and just giving in to the fatigue. On the non chemo weeks, its laundry, food shopping, appointments and visiting friends. We're going through hard things, and keeping your head above water is a brave and exhausting thing. But, you're doing it!! Try to be gentle with yourself and remember that even the bravest warriors, like you, need to rest. I applaud all of your efforts and the struggles you are going through to get past this. You'll make it. It's just that right now you need to rest and replenish. If you can, try some gentle exercise or even go outside for a bit.
Look forward to a plan for what you will do after cancer.
Wishing you my very best!! @lilliejane2

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lilliejane2 | @lilliejane2 | Nov 10, 2023
In reply to @scalettasandy "Thank you so much for posting all this information! I’m 62, live alone, satage 4 with..." + (show)
@scalettasandy

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 😭😭

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Hello.
Does your oncologist
Have a nurse line or a palliative care team that you can reach out to? I know it feels like you are so alone. I have often felt that way, with similar bathroom issues. The nausea that I have 2 weeks out of the month keeps me from even really talking to anyone.
Do you like to write?
Or do artwork, or crafts? Especially writing and artwork that may help you with the loneliness going through this.
Are you able to go for a walk, or do any exercise that you can do from home? YouTube has some really good exercise videos ranging from gentle to more rigorous.
Please reach out to someone in your doctors office. Perhaps there is someone in visiting nurses who can come to you? Or are there any community groups or churches where someone could visit you each week?
Good for you for trying to reach out.
If I can offer a bit of hope, keep your head up and try to see yourself after you have recovered from this. Thoughts are with you.

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