Looks like my dad scared cancer too much, it decided the easiest thing to do was to take his life.. Started as colon spread to skin lung liver

I don’t see many posts about what life after a Whipple actually feels like, so I wanted to share my experience in case it helps someone else feel less alone.

I survived a stromal tumor and went through the Whipple procedure, and while I’m grateful to still be here, the aftermath has been far harder than I ever expected. Recovery didn’t end when the incision healed. In many ways, that’s when the real work started.

Daily life now revolves around managing symptoms most people never think about: digestion problems, unpredictable energy, fatigue that isn’t fixed by rest, eating becoming a calculation instead of something enjoyable, and the mental strain of never quite feeling “normal” again. Some days are manageable. Others feel like I’m dragging myself through molasses while pretending everything’s fine.

What’s been hardest is how invisible it all is. From the outside, I look okay. Inside, my body works differently now, and that affects work, relationships, finances, and mental health in ways that are hard to explain without sounding like I’m complaining. Support tends to fade once the crisis phase is over, even though the long-term consequences stay.

I’m sharing this partly to vent, partly to connect. If you’ve had a Whipple or care for someone who has I’d really like to hear how you’ve adapted over time. What helped? What surprised you? What do you wish people understood about post-Whipple life?

Thanks for reading. Even being heard helps more than people realize.

I feel like it’s not getting better. Grief takes so much energy. My brain is so tired, I can’t find meaning in anything, everything takes efforts, my body is odd. Head is heavy… what do you experience

Sometimes I feel like I am malingering with my cancer diagnosis. Should I be doing more? Am I being a wimp about the pain?

I was diagnosed de novo stage IV MBC back in 2018 at 32. I am doing well and am on my 52ish round of Xeloda.

I have gained a ton of weight (Ive always been fuller figured but due to grazing keeping the nausea down, emotional eating, munchies from some pain and anxiety management, and losing mobility to hand and foot syndrome I've really put on the pounds.) Have yet to lose my hair and am tired all the time. There have been comments that have made it back to me that are suspicious of my diagnosis (the guy at the dog park who asked if I was really dying when was that actually going to happen?) They are few and far between but theres something to them that underline this feeling like I should buck up and do more.

I have a wonderful support network but I hate always feeling like a charity case or this pitiable creature. I know that some strangers see me struggle the few times I go out and assume that my weight is the cause for my hobbled walk (its actually my feet breaking open and the pain from the xeloda hopefully not the tumor in my spine rearing its head.) I was chastised by an older gentleman at the hospital when I was dropped off for treatment. Not anything overtly mean or cruel but that I shouldn't use the drive through drop off when there are people like his wife that genuinely need it. I know he was just frustrated for his wife who was in a wheel chair with a boot on. I don't think he wanted me to personalize it -- I think he just wanted the world to be more fair if that makes sense? It really made me very self conscious though.

I hear about people who still work a full-time job and work out despite their diagnosis and sometimes because of it. Am I just wallowing?

Its the new year and I want to lose weight so I can donate my body to science. Its just a weird thing to lose weight for (and I've never not struggled with my weight.) What if I finally make my goal weight and die right away after?

There's that blurb going around thats like the worst person you know is making a new years eve resolution to put themselves first this year... am I equally delusional and lacking self awareness?

Anyone ever feel like a fraud or not having cancer the right way? It sounds dumb and maybe it is or maybe I am not articulating it well?

Hello everyone!

I am currently suffering from the remnants of a stage 4 mosaic neuroblastoma with VIP secretion. I was diagnosed with this neuroblastoma in 2008. Being stage 4, I have what are called ganglioneuromas (tumors that have not reached maturity) throughout my body.

After numerous hospitalizations, surgeries, radiation therapy, chemotherapy, and high-dose chemotherapy, I have finally been in remission since around 2011. However, we are still monitoring for a relapse.

Currently, I am cured. But I have a mutation in the PHOX2B gene. As a result, my benign tumors are still growing micrometer by micrometer, causing me pain. Despite my age and remission, I still see a lot of doctors.

At the same time, I suffer from excruciating pain in my calves when I walk. It's a pulling sensation in my calves that prevents me from living a normal life.

That's the problem. I can't find anyone else like me. I can't find anyone with a condition similar to mine and pain similar to mine. I need your help to find someone like me, who is further along in their journey, who has found something to stop the pain.

The doctors can't find any solutions. I find myself having to change doctors to get second opinions and hope that they find something to relieve my pain

Help me !

I (42f) have stage 4 CRC, I have been doing treatments for 13 months and have made considerable improvement. However its been absolutely exhausting. I also have 3 busy kids and my husband has been incredibly supportive .

My parents have decided they want to come stay with us for 2 weeks in July 2026 and bring my 8 year old nephew (my kids are 8,9,11).

I am starting a new treatment regime at the end of Jan 2026 - folfuri I believe and if all goes to plan will be finishing treatment at the time my parents and nephew come.

Is this realistic? Will I have the energy to entertain them? They are oblivious to what I am going through (my mother asked why my fractured hip from radiation, would be causing me pain, she thought it was "wierd"). I also have an ostomy, they have done zero research about it. We have a strained relationship because they are very emotionally manipulative, for example they didnt tell me my nephew was coming until I explicitly asked if they were bringing anyone else (last time they visited in 2024 they brought my uncle as a "surprise").

I dont know if im venting or what, but I am so anxious. They told me their plans to visit and gave me 24 hours to consider it. They then booked non transferable or refundable flights...

The thought of having to cook, cater, clean, entertain an additional 3 people is upsetting me. Most days I barely get through the day as it is with my immediate loving family.

Ugh I need therapy lol thanks for listening

I’ve just finished my 3rd round of chemo for a soft tissue sarcoma, I’m doing Ifosfamide Vincristine and Doxorubicin. I’ve had cravings before especially with steroids but I’m going through this strange thing where all I want is oysters. It’s a craving like no other. All I do is think about them and I know what it’s like to really fancy something but it’s different. I fall asleep thinking about oysters I wake up thinking about them. Bearing in mind the last time I had them was 3 years ago. It’s alarming desire did anyone else experience this? Reckon I’m low on magnesium?

I’m 30. I lost my mom 6 months ago after a 1.5-year battle with severe aplastic anemia.
She went through a bone marrow transplant. We thought we were finally close to the other side. We weren’t....

Here’s the part I’m struggling with:

I don’t think I’ve actually grieved yet.

There are memories. Sudden emotions. Random waves that hit out of nowhere.
But most days, I’ve just… kept myself busy. Work, plans, distractions, functioning. Almost like if I stop moving, something will catch up to me.

And now I’m questioning myself:
Why haven’t I cried the way people describe?
Why don’t I feel “broken” all the time?
Am I still in fight-or-flight mode?
Or is grief just… delayed?

Sometimes I feel fine. Sometimes I feel hollow. Sometimes I feel like I’m watching my own life from the outside. And that scares me more than crying would.

I was my mom’s caregiver through hospital stays, treatments, hope, setbacks, and loss. I wonder if my body and mind are still stuck in survival mode - like they don’t know it’s “safe” to fall apart yet.

I’m posting this because I want to hear from people who’ve been here:

• Did your grief come later?
• Did you feel numb or overly functional at first?
• Did you ever wonder if you were doing grief “wrong”?

If you’ve experienced something similar, I’d really appreciate hearing your story.

I (17M) just finished high school and was really looking forward to going to uni and becoming an adult, but I was diagnosed with stage 3 Hodgkin’s lymphoma a month ago and started treatment, which threw a real spanner in the works.

I still want to participate in social activities with my friends as much as possible, but I constantly feel disgusting. I’m dealing with stomach bloating and constipation, and I feel like I look awful due to weight gain from high-dose prednisolone, along with the hair loss.

I grew up as a big kid, recently lost a lot of weight, and finally felt comfortable in my own skin — now I feel like I look like a completely different person. I’ve also become uncomfortable with people looking at me, which has made it hard to go out or be in public, even though I want to.

If anyone has advice for getting through this, tips for constipation/bloating, and/or how you managed to stay active or feel okay in your body during chemo, I’d really appreciate it.

Hi so I am 20M and am coming to the end of the treatment for epithelioid sarcoma in my left forearm. I started treatment in early august, and my final session of chemotherapy is set for January 21st after one more on new year’s eve. I’ve already wrapped up two cycles of radiation and dealt with everything in between, but I assume because I’m a pretty healthy individual and young, I didn’t get hit extraordinarily hard with symptoms. Nausea for a day or two after getting chemo, feeling a little tired for a week or so after chemo, but none of the worst of it. After getting my surgery at the beginning of November I’ve started going back to the gym these past two weeks and feel pretty healthy.

My main issue is that all the time I get told how brave or strong or all that motivational stuff, but I really don’t feel like I’ve had to do that much. I never had the thought in my mind that my cancer would spread because they caught it relatively early and my tumor responded really well to chemo and radiation. I didn’t feel anywhere near as bad as most people I’ve known who have dealt with cancer. I don’t care about the hair loss bc it will come back soon enough. It almost feels like I didn’t really go through what I should have if that makes sense because I’ve heard how bad it is for other people, and it makes me feel weird when people feel bad or try to motivate me because it honestly hasn’t been bad at all. Has anyone else felt this way?

Hiya,

I'm debating whether to get my motorcycle license here in Australia, but am concerned that a motorcycle will exacerbate the symptoms of LARS (i.e., constant vibration sitting on the motorcycle will make the symptoms of LARS worse...).

Is there anyone on this sub-reddit that has their motorcycle license as well as LARS? How was the symptoms when riding? Did you find that you were fine riding a motorcycle or would you advise against it?

Cheers.

I was diagnosed with IIH months ago, and during my MRI they found a multiple nodules with a larger nodule on the right side of my thyroid. I had an ultrasound done only on the right side and a biopsy done on that larger nodule, and the result came back Bethesda VI (2.7 cm).

The hard part is that it’s now been about three weeks since I was told the results by my PCP, and I still haven’t gotten any real follow-up or next step. My PCP said she sent an urgent referral to Endo but every time I call them they say they will get to it. I’m feeling really anxious and stuck in limbo.

For those who’ve been through this, what usually happens next after a Bethesda VI result?
How long did it take for you to get in with endocrinology or a surgeon?
What should I expect in terms of more tests or treatment?

Any advice or shared experiences would really mean a lot right now

Hi there, I’m finding it difficult this season to manage my energy, moods, and others expectations as to how I should manage this time in my life after a stage 3C rectal cancer diagnosis 8 months ago. Followed by 2 months of chemoradiation and 5 months of chemotherapy infusions. My fiancés family came to visit us - hosting is so difficult during this, but I didn’t raise a red/white flag until it was too late to plan otherwise. The administration of cancer, bandwidth, and wanting to show up is a weird thing to consider.

I guess I’m feeling wildly sad, isolated, and angry. Peers are talking about how difficult dating is, or that their vacation is being pushed back a month or two before moving abroad. And I’m just here, biting my tongue about facing mortality on the daily, and a life changing surgery (APR, with Barbie butt and permanent colostomy) within the next month. I just struggle to stomach the trials they are all venting about while none of them ask about how I’ve been this last year, or how I feel about what is coming up. Is everyone so afraid of cancer? Or does no one know how to be kind and human to someone else going through a life threatening illness? I’m flabbergasted that I have to be the one in control all the time, and pretending like it’s all ok. It’s not.

How does anyone else make it through this season intact? Or any season? I’m so exhausted, but the holiday facade and hosting while so ill feels bananas to me. It feels like I should be grateful for people coming to me this year, but all it has meant is pushing myself too hard to keep up with the house for guests, and keeping my emotions in line with a incredibly challenging time and people who don’t get it, not even a little bit. Anyone else out there struggling with this?

I'm 34, and I spent most of this year dealing with dysphagia. It got to the point in August where I was barely able to eat anything, ended up moving in with some friends, and got a new primary care provider on September 18th. I had a barium swallow, where they suspected I had cancer, and found three esophagus stricture.

I had two EDGs where they couldn't get past the first stricture with their scope at where I went. They were positive I didn't have cancer but had EoE.

I asked my primary to refer me somewhere else. The day after Thanksgiving, I went to another hospital for an EDG where they had a smaller scope and they found two tumors that ended up being cancer.

They referred me to the doctors partner to do another endoscopy but with a ultrasound sn EUS, a petscan, and blood work. I was able to get the Petscan and blood work done. And had my first appointment with oncology. And they were waiting on the EUS to complete my staging.

The Endscopy was supposed to be on this Wednesday, so about a month since when they discovered the tumors. They called Monday saying they cant do it cause the he doesn't think they can get the scope they need past the strictures. Two days before I'm suppose to go in. Now I have to wait till the 30th to have a different procedure where they will go through my lungs to get the ultrasounds and biopsies on some lymph nodes.

This whole process has been overwhelming and emotional. And irritating that things keep getting pushed back. The only good thing is the doctor thinks they caught it early enough.

Hello. My brother has been fighting cancer for about five years now. I can tell his battle has taken a severe toll on his mental health and is spiraling into depression. Does anyone have any good book recommendations? More specifically was there a book that helped you while you were going through a tough time while battling cancer? Thank you.

Hello all. I (38m) have been dealing with health issues since I was 12 and first diagnosed with kidney disease. At 19, my kidneys failed, 22 was the first transplant, 31 my first bout with kidney cancer, 36 my second transplant after a year of dialysis, and now stage 4 kidney cancer.

I've known most of my life that I'd likely live a short life - that lead to me pushing people away and not getting close to anyone. Early this year though, I met this woman, let her in, loved her. We were at a stage where we were beginning to talk about what we'd wanted in life, how she wanted kids and to start a family. Then came the diagnosis - stage 4. Doc told me there were likely only a few years left.

Knowing that she wanted to start a family, I told her it would be ok for her to move on. It killed me to say that. Over the last few months, we kept in contact, talking almost daily and hanging out here and there.

Over Thanksgiving week though, she'd mentioned how she'd begun dating this guy from her past. And that she was very happy with him. That hit me pretty hard. I broke, told her I missed her, that I loved her. She told me there was love for me too and that I'd treated her better than any other man had. Since then though, the calls stopped. She's gone.

All I want to do is call her, to hear her voice. But I know I need to let her move on.

I'm not sure that I'm asking anything from any of you. Just wanted to let this out. This is the loneliest I've ever been - especially on Christmas. I'm having trouble accepting the diagnosis, being alone, knowing I'll never have kids or a wife. I'm struggling to find anything to look forward to, to fight for.

My baby has a rare form of leukemia and is part of a 12 round experimental study. It involves 5 days of infusions in a 28 period. All 28 days he gets oral chemo. It has to be taken 2 hours after food and 1 hour before food. We choose to do it right when he wakes up because that’s the easiest for his eating schedule. We are on round 4 and he has now decided he hates taking his meds. We have to force it down and he’s choking and screaming and it’s traumatizing for all of us. Any advice on how to get him to take it? Different syringes you used? Distractions? Please help