u/SignificantClock8473

I’m still fresh from finishing my last FOLFIRINOX/surgery and still detoxing with a lot of recovery ahead. I got a some neuropathy, my gut is a mess, my brain doesn’t work like it used to and taking a dump is still a painful horror show😅 (I am going to treat my butt like a king for the rest of my life; the poor guy has been through hell).

I tried to work a full day yesterday where I just solve other people’s problems. Driving home, I felt irritated and started being annoyed by other people’s driving. The more irritation I felt, the more physically uncomfortable I got, the more sad I got and the more fearful I got that I will just go back to old ways of living and forget everything I’ve learned at cancer school. Cancer helped crack me open and I don’t want to close back up.

What are some changes I can make, practices to adopt, to not go back to what I was before? Reading all the posts on r/pancreaticcancer has helped me this week so far to stay cracked open when I feel I’m closing up. While I’m still so new on the other side of treatment, I can see my new ‘normal’ will gobble me up fast.

Hi all,

This group has been so good for me to process emotions. After whipple surgery last November, I (57 M) just finished FOLFIRINOX for PC and melanoma surgery last week, unplugged from chemo on Friday. I still have detoxing to do. The chemo has thrashed me but ready to work on recovery. All my focus was to get to this point and now have this feeling of WTF am I supposed to do now? Just have a normal Monday morning? 😅

I suspect I’ll get an NED whenever that next step happens. I don’t feel like a survivor. I don’t know any pancreatic cancer survivors but all the people I did know that had PC, passed from it. I know my next challenge is to learn to live life while just not waiting for the other shoe to drop. I already feel like I’ve won the lottery.

Anyways, I wasn’t prepared to feel this way reaching this finish line and probably should have had a plan. If you are getting close to a finish line and things are looking good, I suggest making a plan and including your support. This has been more emotionally intense and disorienting than finding out my cancer condition in the first place. I bet it’s an unexplainable experience, event for loved ones too.

I would love some tips, stories or over all advice!

My heart goes out to all the loved ones that had to navigate this cancer with us. So many ups and downs! I wish there was something I could do but learned that all of this is just part of this amazing life. I feel so fortunate to walk through this shit show with the opportunity to be the person I’ve always wanted to be. What a strange and amazing gift.

Peace and thank you

Hi all, as I type this, I’m getting my last treatment of FOLFIRINOX for pancreatic cancer and just had melanoma and lymph removed from my face yesterday. This is my finish line until the next shoe drops, if it ever does. I have the CDKN2A mutation, I’ll get melanoma again I’m sure. I’ve already had it about 6 or 7 times. I figure if I get pancreatic cancer reoccurrence, my options will be different but I don’t I’ll do FOLFIRINOX again. Anyways, the steroids make me chatty and a couple people have given me feedback about some of the positive aspects I’ve shared of getting cancer has been. So here’s my list of things I’ve learned at cancer school. I do not want to diminish any of your experiences. For me, cancer has been a gift, a shitty gift, but a gift from the universe. I would be curious if you have things to add to the list that you’ve learned? But I hope this helps the caregivers out there. Cancer is harder on you in many ways than me. Buckle up, this long if you make it to the end😂. I’d love for you to add to the list!

Things I’ve learned getting cancer:

**1.** It’s easier to have cancer than it is to watch someone you love get sick from cancer. My dad died of pancreatic cancer and a bunch of other stuff and now I have pancreatic/melanoma. When someone offers me help, I try to take it. Loved ones, friends, colleagues feel helpless; denying help denies them of doing something, anything. I don’t want to take that away from them. It’s mean to do so. I’ve said no to help most of my life and I realize I was saying no to connection. Say yes. I don’t want be a selfish dick.

**2.** Cancer cracked open my spirituality. It’s not about the supernatural, nor religion. It’s about letting my life happen and getting a clear vision of what I can contribute to the stream of life while I’m here. Cancer is my opportunity to walk the way I’ve always wanted to, no matter what happens next.

**3.** Battling or fighting or beating cancer is impossible. It’s not a war I can win, even though people want me to battle and fight like it is. But I can surrender to my body’s ability to heal. I can surrender to my spirit’s ability to beam out to the universe (I stole these words from another Reddit person because that’s a better way to describe it-thank you!. I can surrender to my doctors and let them be experts in what they do. I can surrender to the love that I’m receiving, from everyone, and let it in.

**4.** Life is better with cancer. Colors are brighter and more vivid, things taste better, connections are deeper and more beautiful.

**5.** I can ride the waves of pain. Pain is just a feeling, it’s just information. I can experience it and let it happen. When I resist the pain, it invites more and more pain. I let it happen even when I can’t stand it. My body knows what to do and knows how to surf the pain and ride the waves. It’s become easy to have pain. I got isotopes injected into my face to help chase down the closest lymph. It’s like lava underneath my skin but I could have gotten injections all day by surfing the pain.

**6.** Cancer quieted my hurt inner child. He always wanted me to soothe and comfort him, and now I do. So much of my ego is because of his hurt and being misunderstood and being unheard. Cancer showed me I’m never alone, and never have been even though I felt I was alone. I was always there with him, along with all the people that have cared and loved him and all the people that will love and care for him. Learning how to bring love and compassion to that kid of my past seems to have shut him up. Maybe he’s out playing like he was supposed to be doing instead of suffering? I know that sounds grandiose but grandiosity is kinda the way kids feel. At least that’s how I remember it as a kid. Everything was huge and exaggerated.

**7.** All the anger and lashing out at and punishing others I’ve done was because I was in pain — either physically, emotionally, or spiritually. Because of cancer, I’ve learned to pay attention to what sensations I’m feeling if I have angry thoughts or otherwise negative thoughts directed outward. I found that I’m usually avoiding hurt or I am in pain. Spiritual pain is the worst of it. Tending to my spiritual pain is the most important thing I have ever done. There are a lot of practices that seem to work to tend to spiritual pain. I found a good chunk of the 12-step programs are awesome for spiritual healing but there are so many pathways to take. I’m so sorry I made you suffer. I see the cycle and wish I could go back and stop. I’m so sorry that you took the brunt of all my spiritual pain, incongruence and brokenness. It’s my pain, not yours. I shouldn’t have dumped on you.

**8.** It’s important to share my story. Cancer carries such a dark cloud, especially for those who have loved ones that are sick. But now from the perspective of the one that’s sick or was sick, I see how good life is, how good it always was even though I couldn’t see it then, and how it always will be. I think by saying that, we let people grieve, but also let them understand that this is just part of life. It’s something that happens. Cancer happens. Life happens — just like if you’re an eastern box turtle waking up at sunrise in Missouri and trying to get your move on before it’s too hot and you’re crossing a road and it’s scary that a car is coming. Sometimes a car stops and it’s my dad and he gets out and helps the turtle across the road. Life happens in its entirety whether you try to control it or not. Letting life happen is way easier than trying to make life happen. There are a lot of gifts found in getting cancer or being a turtle crossing a road with a car on the horizon.

**9.** Toxic positivity is real. I don’t let people steal my reality, but also understand that they are scared and don’t want me to have cancer. I comfort them when I can.

**10.** I’m excited to die. Birth is a miracle. Life is a miracle. Death is a miracle. What are the fucking chances? On the way to the cancer center, I would always pass the fossil T-Rex skull in the children’s hospital and think of all the life that has existed and will exist. That always grounded me going in and coming back out. I’d have my chemo bag with me and usually leaving, the effects would start — it feels like you put your finger too far inside your bellybutton. A pain and discomfort that is deep. I think that’s when all my gut bacteria start to die. That T-Rex skull would stop me dead in my tracks, rain or not, and I would see and feel the miracle of everything. What are the fucking chances?!

**11.** I try to let people out of the box I put them in. Quick judgments and assessments I’ve made of people are very incomplete, but I will judge them based on my incomplete assessment throughout time. It’s what my brain does. While I learned this next gift from my friend Mark before I got cancer, the events that cracked me open are related to my dad and the box I put him in and the box I took him out of before he died. Mark told me that his dad died but it’s okay because they were good. I asked him what he meant by “good” — to where his dad would die without him being there and he’s cool with that. He described how he made real peace and enjoyed the things that he loved about him. I never told my dad what I loved about him and more treated him like he was the dick my judgment made of him. I thought that it must be hard for him to never know what his son loved about him. I didn’t want him to die without knowing, so I wrote him a letter describing one thing that I loved about him. He came out of the box I put him in and we had a real connection. Even though he’s dead, I take his memories out of the box all the time and share those memories with my sisters. Such gifts.

I went to the hospital because my bilirubin counts were off the charts. After a quick scan, they saw an obstruction of a bile duct. I stayed to get an endoscopy to put a stent in and check out the mass that was obstructing it. They knocked me out for the procedure and at the very last second before I lost consciousness, the anesthesiologist told me to think of a pleasant place. I immediately thought of snorkeling in the Philippines. When I was out though, I met my dad. He was his 1970s dad with cool clothes. We were in a Mediterranean field full of flowers and we picked some flowers and looked at stuff together, not saying a word. He had that angelic, glazed stare through me when we looked at each other. I was so blissed out. The nurse was trying to wake me up from the endoscopy. I didn’t want to wake up. I wanted to stay with him in the poppy field.

When I did wake up, the doctor was there. She was the most beautiful person I have ever seen. She was telling me that I have pancreatic cancer but the pathologist will confirm. The colors popped. Life was vibrating. I think taking my dad out of the box was my awakening — cancer was the cherry, the opportunity to be the man I always wanted to be. Fearless and living life full-tilt-boogie, whatever that may look like.

**12.** Angels do exist. They work in hospice and the cancer center delivering chemotherapy. Go see for yourself. They are perfections of humanity and give me so much hope. I will miss them so, so, so much.

**13.** We know we are alive with other life in our body. The chemo kills them all and I can feel their death. I get so, so, so sad when they would die. Take care of the life in your gut. Your life depends on it. They affect your emotional and physical health. Feed them well.

14. Time during chemo and surgery takes me outside my comfort zone 24-7. I’ve done weird cool stuff like start an unusual t-shirt collection, make good friends with a couple neighborhood crows (one is close to landing in my shoulder!) and decided to try and learn the accordion by taking lessons, unbeknownst to me, one of the hardest instruments to learn😂. I love it and my teacher is the coolest guy I know.

15. Before getting cancer, I go to a men’s group facilitated by my therapist-shaman-hippy-biker-guru-brother and they made me teachable. They are the ones along with my ex-wife that made me teachable through this shitty gift. I can’t do this alone. Don’t try to do this alone.

16. Go buy Mark Nepo’s book ‘The Book of Awakening.’ I’ve read it as recovering from poor coping mechanisms I’ve collected throughout life. I’ve read it to grieve a marriage I broke. I and now I read as one that is surviving cancer. Mark is a cancer survivor and a poet but you can tell, his experience cracked him open for sure. Plus Jamie Lee Curtis writes an amazing forward.😊

I’ve been having quite the ride with PC and I have to admit that my life is better than it’s ever been. I wasn’t scared of dying, but I was scared of suffering. Not anymore though. I don’t think anything will be harder than chemo.

I go into surgery next week for melanoma (I got the CDKN2A mutation and simultaneous cancers). The next day, fingers crossed, I get my last FOLFIRINOX treatment. Chemo has thrashed me in seven months with the first treatment and last four being the hardest in very different ways. I won’t be doing that treatment again. I’d choke Hitler out in a second, but not too sure if I’d wish this chemo on him.

Surprising feelz have popped up and THANK YOU pancreatic cancer REDDIT, for being the place I can process some of this with like people. Being a 56 white GENX dude, emotions have been foreign but with some therapy, then getting cancer, I’m getting to know them.

First, I’m sad that I won’t be getting chemo, even though I hate it. On the way to the cancer center, I would always pass the fossil TREX skull in the children’s hospital and think of all the life that has existed and will exist. That always grounded me going in and coming back out. I felt I had perspective. I will also miss the beautiful amazing people in the cancer center that take such good care of me. They are the angels of real life and I’ve never experienced before the juju they gave me. Those people give me hope in humanity and I will so much miss them and their care and compassion and beauty.

Second weird feelz, I’m bummed I’m not dying anytime soon. I gotta admit, I was a little excited to see what happens next! I see that birth is a miracle, life is a miracle and death is a miracle. I’ve checked off two miracles and was kinda looking forward to the third. I’ll be patient and also don’t want to squander all the efforts of loved ones, Drs, hospital staff to keep me alive. I’ll do my best to make it worth it.

Lastly, I’m still a little scared. I’m scared I will be like I was before: preoccupied by thoughts, avoiding feelings, solving non-existent problems and missing the beauty of everything in real time, outside of my head. I’ve been on FMLA for 8 months (even though I worked a lot the whole time😂), and spent a lot of time without too much monkey mind, shit thoughts and being impatient, angry at others or otherwise a dick because I was projecting pain or avoiding feelings. I don’t want to slip back into old ways after all of this.

Anyone else have these weird feelings going into the next marathon, post treatments?

THANK YOU AGAIN (if you read this far) for being a sounding board for experiences and feelings. Wishing you all the peace you deserve and see you on the other side when the time is right!

I’m a professor, a scientist (entomologist) and a nature lover without a religion. When I woke up from my endoscopy and was told I have pancreatic cancer, everything has been better, more vivid and meaningful: taste, colors and connections. The Dr telling me my diagnosis was the most beautiful person I’ve ever seen. Before I woke up, I was picking flowers with my dad in a Mediterranean field. He was what he looked in the 1970’s, a cool cat. He died two years ago from pancreatic cancer. I didn’t want to wake up.

While recovering from my whipple in the hospital, the surgeon came in to tell me that the surgery went perfectly, clean margins and lymph clear. I floated out of the room, out the window, above wright park, through stadium district where I saw people on the street, on dates, eating food, then floated above commencement bay, out in the sound, and made to Vashion island before I thought “I better turn back or I won’t come back😂”

Every night I go to bed thinking that this was the best day of my life and I can’t wait to see what happens tomorrow. Time is different. I cry when I suffer from the chemo and I cry when I feel so good. It’s been six months and never knew how much the people in my life cared about me: my ex, friends, work colleagues, neighbors, rando connections. I’m finishing up FMLA and I am taking accordion lessons and made a good friend with a crow that hangs out with me while I garden.

Yes it sucks to have cancer. I’ve got the CDKN2A mutation and have simultaneous cancers, pancreatic and melanoma that I’m getting treated. I’ll live for awhile I think; it will get me some day. But life has never been better. When I tell people this, they look at me like I’m nuts. I KNOW some of you get it. Did you crack open too? I bliss out regularly. I hope this doesn’t go away. Regardless, it’s the quality, not the quality for sure.

Hi all, has anyone come up with a cheaper hack to move the conveggtor in and out while it’s hot? Or just use gloves😅?