u/Reasonable_Day_1227

I’ve posted on here a few times and I’m always grateful for people sharing their experiences/ advice with me.

When my dad was first diagnosed back in August this year, he was noble, brave and so loving and open to affection. He was still laughing. We were crying together, having really heavy conversations and I had never felt so bonded to him even though we were incredibly close already. He was walking and playing table tennis and cleaning the house etc.

This version of him lasted a month or so. These past 2/3 weeks he’s virtually a shell of himself. He pretty much stays in bed all day. He sometimes gets up and sits up but he sort of has to sleep/ meditate the pain away at almost all times. He’s cried hysterically to be about the pain. He’s wished for death. He is starting to reject attention, affection and company. It’s so sad seeing him change like this. He goes down to London tomorrow for 8 weeks to start the RAS303 trial but we don’t even know what group he’s in yet or if he even has the energy to get treatment at all.

I wonder if anyone has had a similar experience. I expected that even when he was really sick and near the end he would still have the capacity to love and cuddle and give me advice and tell me all he wants for my future etc. I thought I’d be able to sit with him and watch tv and laugh and cheer him up. I guess that I was naive. I’m glad we had some tough conversations early. That would be my advice to anyone going through this. Get the hard conversations and the sentimental stuff out the way when you can because before you know it they might not have the energy to be themselves. I’m not trying to scare anyone. I just wish I had gotten everything out of him while I could.

Also if anyone has any suggestions about pain management. It’s at the point where we’re completely out of his depths and it’s changed him completely. I also wonder if anyone has ever been in his position. What does he really want. Is he turning my affection away as to protect me from this version of him or does he really just need to be alone. I feel so guilty leaving him in his room all day. But every time I try to make contact he makes an excuse or says he’s really sore and needs to be alone. Thanks everyone x

My Dad is 62 and recently diagnosed with stage 4 pancreatic cancer with liver spread after pain and weight loss. His cousin recently died of the same thing just weeks ago after attempting one round of the strongest chemo and struggling too much.

He’s still pretty strong and healthy. The doctors in the uk I must say have been pretty disappointing overall. From the second he’s been diagnosed it’s felt pretty negligent.

When he was diagnosed he waited in a room for 3h in pain before they brought him into his appointment to tell him it was cancer. Same the second time when they told him it had spread.

He went today to the Beatson cancer hospital in Glasgow. I was looking forward to him having this appointment as they are specialists and it said online that they offered clinical trials. We were really holding out for daraxonrasib as it seems to be working very well over in the states. And it also said online that they offer this here to those who are stage 4 and aren’t treated. They completely dismissed this hope, very quickly stating that it was only for people who had been operated on or who had tired chemo.

We had also hoped that they would consider specific genetic factors due to his cousin recently dying from the same cancer, as it’s clear there could be a gene mutation that would give us a better understanding of his specific type of cancer. They gave us no information other than the fact there’s a cancerous tumour on his pancreas and it’s in his liver too. No idea of sizes, grade, type, how many tumours there are on the liver etc. we feel like we know nothing. They said the only thing for him is aggressive chemotherapy. And then went on to list all the horrors to expect with it.

My dad is now hesitant to bother with chemo as they said it could only take his estimate from 6 months to a year. I’m at the point now where I don’t really want him to go through it either. We’re even considering assisted dying in Switzerland as we don’t want him to become unbearably ill.

I can’t believe at just 23 I’m even considering these things. It’s not something I’ve ever thought to consider. But here we are. If anyone has any advice, it would be appreciated. Brutal honesty is welcome. I understand that he’s not going to be cured or anything, I just hoped there would be more care and caution taken with his specific case. But it just seems like he’s part of a big cycle of patients all with the same options and the same fate.

Dad was diagnosed 10 days ago and we are currently waiting for his mri to see where the spread is. We also found out his cousin is currently in hospice after also being diagnosed a year ago and are going to inquire as to whether there is a genetic relationship between his case and hers. If so does this give us a better understanding of his specific case? She had one round of chemo and couldn’t do anymore.

I’m also wondering if anyone in the UK has advice on how to get onto drug trials here or how to ensure we are given specific testing. It seems as though the doctors are just going to try chemo. But it sort of feels like they haven’t looked into it enough. I want to trust in them but his appointments have all been pretty disappointing in terms of waiting times, waiting for results and lack of attention to detail.

It’s difficult. I’m only 23 and my whole life everything has been pretty steady and perfect. I know this is the nature of life and I accept that. I see here how there are so many people going through similar things. But it’s just so hard and confusing to come to terms with. Im either crying or feeling guilty for not crying. And when im distracted, having to remember is like feeling it all over again. He’s a very precious man. And every moment now feels sacred, bittersweet and somehow tarnished.

I’ve scared myself this evening specifically because I think I was reassured in how normal he is seeming. I assumed he has a lot of time because he’s up and about pretty much as normal walking everyday and eating. He is in a lot of pain, and it’s gotten worse the past few weeks. Once the painkillers start to wear off he changes. But he’s normal when they’re working, thank god for painkillers.
But I read a whole thread about how quickly things can change. I can see that this is the reality for a lot of people. And I’m not trying to be naive to it. But it was a very tough thing to read. As you all will know it’s also very hard waiting for results. It’s been bad news after bad news and so I’m expecting the worst but somehow there’s a small part of me that hopes it’s not in his liver. Or at least hopes if it is that there’s a chance he has more than a couple months.

I’m also worried about how chemo will affect him. It might sound a bit pathetic considering there’s more serious body changes occurring for him. But I’m so scared of seeing him look like he has cancer. I’m sorry if that sounds insensitive. It’s just hard to feel the heaviness of it when it’s just an image of the future, while he’s still well and himself. It’s going to hit me like a ton of bricks. Believe it or not this is a stronger day for me. But it’s easy to say that when right now it’s just a diagnosis, not something that’s visible or sending him to hospital.

Sorry for the rant. It often hits me in the late evenings when everyone is asleep. Looking for some words of wisdom, maybe some hope if anyone’s got any. Or a reality check if maybe that’s what you think I need. Thanks guys. Very grateful for the support on here 🩷 love to you all!

Hey everyone. Just looking for some advice/ support honestly. I’m 23 years old and feeling very overwhelmed.

My dad (62) was today, diagnosed with pancreatic cancer on the tail of his pancreas after months of pain and weight loss.

We sort of knew it was coming, so I had time to prepare. Today I feel weirdly calm, maybe numb. Probably relief after some very uncertain weeks. We’re still at a stage where we don’t entirely know what’s going on and what can be done.

He’s strong, not super ill right now. Just managing pain.
Doctor said he’ll definitely need chemo next. There is an artery involved, and therefore they can’t operate immediately, but he said he’s hoping the chemo will shrink the tumour and then they will reassess.

Based on my extensive research (ChatGPT and Reddit…) realistically he probably will die from this disease within months. I’m scared of all that I will have to see him go through and I’m conscious of making the most of the time we have left together.

It’s been the worst couple weeks of my life and I imagine it will only get harder to deal with. So I would appreciate any words of encouragement or positive energy. Also any advice or help in understanding how do deal with all the treatment and sadness that is to come. I know this disease can be horrible, and I’m not seeking some false hope or miracle cure. But it would be nice to hear from people who have been in a similar position to me. Thanks guys.

My dad is 62 and has been suffering with pain after eating for about 5 months. Doctors initially did blood tests and found prediabetes back in March and said he was otherwise healthy but should consider his diet. He’s not overweight but he has since lost a bit of weight due to trying to eat healthier. Since then the pain has continued after meals especially upper right stomach. He is otherwise well but I think the pain is worsening as time goes on.

We took him to a specialist who did a ct scan which showed an abnormality on the tail of the pancreas along with calcifications. These calcifications the doctor said are not typical of pancreatic cancer but don’t rule it out. The pancreas was inflamed and there was an enlarged nearby lymph node but all organs around looked normal.
They told him to gain some weight and keep moving his body. I’m guessing because they are anticipating giving him some harsh treatments.

He has his camera throat test thing tomorrow and a biopsy. I don’t really understand much about this disease, but I’m assuming from this I should expect a pretty serious diagnosis?

I have worried about my dad getting ill since I was a child, I’m 23 now and he is my best friend. I really don’t feel ready to go through something like this. It’s completely overwhelming me. The thought of him being ill and his appearance changing and him fading away is my absolute worst fear. Does anyone have any advice or messages of reassurance. I’m pretty realistic about the outlook here, but I need to get my head around this and also figure out how to cope. I feel sick. Thanks.