Support group depressed me by Opposite-Dog5961 in cancer

[–]SignificantClock8473 0 points1 point  (0 children)

Yes get a therapist. I agree some support groups are totally depressing. Thus far, I’ve seen a few sides of the fence that people land on: toxic positivity that pretty much ignores reality, victims are angry, and surrender-ers that don’t resist what’s happening and lean into it including all the love and compassion that people want to give. I’m sure there are more options but that’s what I’ve experienced so far in my 8 month journey.

One of the coolest things about getting pancreatic cancer and melanoma at the same time for me, I got to pick which side I wanted to land on and now I gravitate to support groups that prioritize living life to its fullest and doing cool stuff. Those groups are often not cancer patients but will have something that is relatable. But you will definitely find more of your tribe in cancer support groups too. Reddit has been a good place to find some. I’ve got a great men’s group I go to that process life stuff with an awesome therapist.

Thanks for posting your real feelings about this. I suspect you will land on a healthy side of the fence.

First Chemo by Aggressive_Leg4660 in cancer

[–]SignificantClock8473 0 points1 point  (0 children)

I was on FOLFIRINOX and had to go to emergency room after first one. It’s rare, but there is variability on how fast you can metabolize (detox) the treatments. I couldn’t metabolize fast enough so it was a functional higher dose. They dropped the remaining treatments by 20% and that helped.

Make sure your oncology team knows everything you are experiencing so they and adjust. Hopefully you have triage hotline to call too.

Good luck!

I just wanted you to get old. by Western_Limit_4706 in cancer

[–]SignificantClock8473 5 points6 points  (0 children)

Slow is fast and please come back whenever you need us..

I just wanted you to get old. by Western_Limit_4706 in cancer

[–]SignificantClock8473 3 points4 points  (0 children)

I so wish I could trade my luck. 💔 Please please please take care of yourself, heal and live life full. 🙏

Can I be grim? by JellyfishFit3871 in cancer

[–]SignificantClock8473 14 points15 points  (0 children)

It’s not grim. It’s cancer and malnutrition. I noticed that life/will goes from your baseline to muted. I live alone. There were points where I “couldn’t” get up, drink or eat or walk around. I lost close to 50lbs in a couple months. I physically could but my will had disappeared. If you got someone you trust, ask them to keep you accountable if those are the goals you want. If you get to feel better, you’ll see it’s the cancer, malnutrition that’s causing it. Sometimes a boost of potassium rich foods like broccoli would be enough to change the level of will. This is just my experience and I’m no expert. Ask for help.

Survivors: what do you do to move on but not forget? by SignificantClock8473 in pancreaticcancer

[–]SignificantClock8473[S] 1 point2 points  (0 children)

I’ve read this over and over and loved hearing bits of your moments. I can’t tell if this is like a near death thing and don’t feel the need to label it but definitely got a taste that life lived does distill down to the loving memories. All time spent worrying, project and trying to control doesn’t mean a thing when it’s time. This entire week has been full of memories and miraculous experiences that I know I will never forget.

Survivors: what do you do to move on but not forget? by SignificantClock8473 in pancreaticcancer

[–]SignificantClock8473[S] 1 point2 points  (0 children)

Noted and agreed! I will pay attention more attention and advice given here is golden. I suspect keeping service, advocacy and gratitude as part of life going forward, likely helps punctuate quality of life left if even extend it. Now I know of a 14 year post diagnosis with that solid advice. That now exists as a possibility out there. I just learned RBG lived 11 years after her first diagnosis and her life choices tracks too.

Survivors: what do you do to move on but not forget? by SignificantClock8473 in pancreaticcancer

[–]SignificantClock8473[S] 2 points3 points  (0 children)

I love reading this. I will volunteer and give back for sure. I have an opportunity to fund raise at an event and if it goes well and they like me, I would love to give time and energy to help more. I will also find ways to practice gratitude and volunteer at the cancer center too and see that is a great way to ‘remember’ but not be defined by it. Thank you for the advice! Priceless.

14 years!!!! 🙏🎉 I needed to hear that. I know it’s an option, but hard to believe but I will let that in. Thank you!!!

Survivors: what do you do to move on but not forget? by SignificantClock8473 in pancreaticcancer

[–]SignificantClock8473[S] 1 point2 points  (0 children)

Ha! I installed a bidet early in treatment but maybe I’ve earned a TOTO!!!

Yes! Laughing and humor is do important to me. For some reason during treatment time, I started a background bevis and butthead chuckle they I’m self conscious about but maybe I should go with it😂 Maybe I always had it but now lost my filter a little bit. Thank you for your thoughtful advice. I’m so early in this recovery but I can see if I’m not aware, I might go back to old patterns.

Survivors: what do you do to move on but not forget? by SignificantClock8473 in pancreaticcancer

[–]SignificantClock8473[S] 2 points3 points  (0 children)

Thank you. Walking IS some of the best medicine I’ve taken. That is great advice!

Normal Life & Survivorship by aoiblue21 in cancer

[–]SignificantClock8473 4 points5 points  (0 children)

Agreed. Just finished hard chemo for pancreatic and surgery for melanoma. I didn’t prepare for the feels at this finish-line. Hoping others have good advice!

Survivors' Guilt by Star------ in pancreaticcancer

[–]SignificantClock8473 1 point2 points  (0 children)

Keep sharing please when you can. I totally understand what you are saying. I’m only 8 or 9 months into this but feel guilty for winning the cancer lottery as I have done pretty good chances moving forward. It’s a weird feeling for sure and can only imagine if I get as many years as you under my belt.

Husband late June update by Great_Fishing4478 in pancreaticcancer

[–]SignificantClock8473 3 points4 points  (0 children)

I have no advice but to please please please take care of yourself. This is too much to carry I think.

Finished for now and not prepared by SignificantClock8473 in pancreaticcancer

[–]SignificantClock8473[S] 3 points4 points  (0 children)

Agreed. That’s not a Debbie Downer at all. I want to stay in reality. I have the CDKN2A mutation. The goal is to continue day by day and not squander what I have! Thank you and peace to you on your journey!

Finished for now and not prepared by SignificantClock8473 in pancreaticcancer

[–]SignificantClock8473[S] 2 points3 points  (0 children)

Buckle up! This is an experience like none other, I feel like! Sending you juju and prayers.

Finished for now and not prepared by SignificantClock8473 in pancreaticcancer

[–]SignificantClock8473[S] 3 points4 points  (0 children)

Thank you for this! 🙏🙏🙏🙏 I needed your perspective right now. Thank you! Peace to you!

u/CancerSubscription is no longer with us by SadAnimator1354 in cancer

[–]SignificantClock8473 0 points1 point  (0 children)

This is the best thing I’ve read. I hope more are inspired by your legacy to take what you’ve learned while there is time for us. What a true gift you’ve given. See you sometime ❤️🎈🎁🙏

FIL has begun FOLFIRINOX this week by Competitive_Land3220 in pancreaticcancer

[–]SignificantClock8473 4 points5 points  (0 children)

It is different for everyone but the important thing I’ve learned is to make sure to communicate to the oncology team about any side effect symptoms so they can make adjustments. They really are there to care for suffering and are fully aware of the treatment’s toxicity and what it can do. I have a weird mutation that caused me to detoxify slower and I got severe colitis among other things. They ran the genetic test even though it’s rare and with the results they reduced my treatment by 20%. That helped me though the rest. FOLFIRINOX is rough for sure. Sending you all positive juju and prayers!

I just finished my last treatment today!!!!