Parent has stage 4 pancreatic cancer

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Hi everyone,

I just wanted to post here to get some support, from the intiial point were I thought something could be wrong to how we got here is only two monhts and it's a pretty bleak prognosis. My parent has been diagnosed with stage IV pancreatic cancer, intially they thought it was confined to the pancreas but is has spread to the liver, I don't know to what extent but the sugrery which they had hoped to get is no longer an option and they are about to start palliative chemotherapy tomorrow.

They have been given 3 - 6 months to live without chemotherapy and 6 - 12 with chemotherapy, which I know from the past can be brutal.

As a family we are obviously distraught and trying our best to hold it together but this is a huge amount to come to terms with particulalry for them.

I wonder if I could ask some advice on several things.

1. This prognosis looks bleak, but I can't help myself from holding out hope they will do better than expected. I know these can sometimes be averages and wonder if it is worth hoping for better. They have the BRCA gene, which I believe has caused it, and the oncologist intially said would mean that the cancer would respond well to chemo, I wonder if this has been factored in to the prognosis and if therer is any room for help. I am unsure if they asked about clinical trials too and thought this is worth doing. Is there any resonable room for hope or am I being a fantasist?

2. The person who has been diagnosed is reeling form it. Usually my parent is up beat, happy, enegertic and just enjoys life. But it is clear they are struggling a lot, they are depressed and incredibly tearful. I feel like something has already changed and it won't go back. I just want to support them as best that I can but am sometimes unsure how to do this, I am trying to let them talk about the darker side when they feel able, and then acting as normal as I can outside of that, making chit-chat, finding things to watch that I know they like, and suggesting places we can go. I am trying to reassure them that I am fine, so they focus can be on them, and when I am home I am trying to cook and clean as best I can, and have also looked into meal services which may help[ them when everything is really overwhelming. If anhyone has an experience supporting someone like this could you please offer me any advice?

3. Despite wanting to stay strong and perhaps being a little bit in denial, I am am struggling too. I feel I can't sleep, at night it all hits me, and I feel I am crying all the time. I don't really want to do anything and it feels wrong to enjoy myself. I am just doing mind numbing things and feel I just sit there in silence, I don't really want to see my friends either. I feel this could be around a year and honeslty everyday just feels like a timer. I have the thought I don't want to go to sleep because when I wake up I will have one less day with them and I am finding it unbearable. They are quite young just in their mid 60s and are meant to be embarking upon the happy part of their life where they fully enjoy retirement. I feel they have been robbed of this, and as best as we can try, our family will be broken after this. I'm not really sure what my question is here, I just don't know what to do.

4. I am learning about this disease all the time. I don't know a huge amount about cancer, or pancreatic. I understand it is not too common but that is usually very deadly because it is often caught late and is often aggresive. It might help to understand more about this, and how best to make someone comfortable. Particualry with food, eating and pain. Real practical things than can make some difference. They are eating smaller meals already but I think if the food is good they are more likely to eat and keep their strenght up. Is there any resources I could look at, or any help people have found?

5. I am very worried about end of life. I don't really know what is looks like but I understand cancer is brutal to the body. I want to be there as much as I can and am lookign at finding a new job so I can be closer to my family if I need to be, but I'd like to be prepared for this if I can, what needs to be done, what does it look like, how can i prepare myself.

I know that we are not special and that this is devasting for everyone, but I can't help feel so angry and how unfair this is. My parent has had cancer 3 times now, and I know they are aware of what is going to happen as they have a medical backrgound. I cannot help but have this change my worldview, this isn't good, life isn't fair, and if this is what can happen (and much worse) what is generally the point of anything. I knwo that sounds quite childish but I don't see the good in anything.

Sorry for the ramble and definite spelling mistakes. I know everyone has a lot going on after reading parts of this forum. Any help here would be very good right now.

Millibob 6 months ago

Hello Number2fad43d

I am Brian, one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying it will be "bumped up" to the top of the group and I hope seen and replied to by other members of the Pancreatic group.

I noticed you said

Number2fad43d said:
I am am struggling too.

Please do call our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) - they are a great set of people and will be able to help you with your feelings.

Best wishes - Brian.

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Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Strength, Courage, Faith, Hope, Defiance, VICTORY.

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Molly742198 6 months ago

Hi my partner has just been diagnosed in June

started chemo 3 different kinds and he is managing the side affects

we are both frightened to ask how long

just so unfair

MariaO128aa2 6 months ago

My mil and us as family have gone through all those emotions. We were shattered to start with. She has also been given same prognosis.

Is easier said that done but self care is important. I found having routines help.

I am enjoying every moment i have with her and talk about things she is interested in. She enjoyes looking at old pictures.

There will be many bad days but they will be almost good ones.

Sending a virtual hug

Wingingit 6 months ago

Hello

I'm so sorry you are going through this. I'm not sure I can help much but will tell you my experience and see if you can take anything away from it.

I have been in your place, my mum had bc and now I am in your parents place, with pancreatic cancer and a prognosis of less than 12 months.

I have learnt through tiktok lol, to use the phrase what is the best treatment for me? I am not an average statistic. I am only 50 with an autistic 16 year old but a single parent. My oldest is still only 19 so not much better.

So I have told my oncologist that I will not be written off. I've already had the whipple and folfoxin and he just wanted to roll me on to gem c without any consideration if that was best for me. So I started to look for trials and asked for a referral to The Christie in Manchester. From this I have just completed SABR a photon beam therapy. And I have now just been referred back for further trials as I'd like to see if I'm eligible for immunotherapy.

I find it very useful to attend my appointments with a list of questions and let the oncologist see me ticking them off. It stops me from getting too emotional and I get the most out of the short time. I will also no longer sit back and wait for correspondence. I ask when I should know something by and on that day or within 24hr I'm on to the secretary. If that secretary is blasé I'll contact another.

My hpb team have been proactive and invaluable. The Dougie Mac a charity local to me (you will have your owm) have been really useful too.

I'm not naturally a pushy person, but I am literally fighting for my life, the mother my boys still very much need.

Was it harder when it was my mum? To some extent yes because I had less control and I felt really helpless and lost. Whilst also raising 2 children with extra needs and teaching. Life felt chaotic and surreal. I just wanted life to stop so I could get off and gather my thoughts. I made myself ill by trying to do it all and ended up going off sick.

I wish you and your parents the very best on your journey.

Molly742198 6 months ago in reply to Wingingit

Can I ask what a photo beam therapy is?

Wingingit 6 months ago in reply to Molly742198

It's a very precise high dose radiotherapy. I'm unsure why they have called it photon beam on the one hand and proton beam on another. I was only suitable by the skin of my teeth because my reoccurrence was located to one area and within size range on my first pet scan.

It has involved an hour at a time in an mri scanner, in a fixed position. Not pleasant but just about doable for me with some breathing exercises. Plus an extra half an hour, bloods and tests for another research project I agreed to at the time.

Molly742198 6 months ago in reply to Wingingit

Ah my partner wouldn’t be able to have it then

his cancer has spread to his liver ‍♀️

Wingingit 6 months ago in reply to Molly742198

He probably wouldn't be eligible for SABR but do not give up hope. Look out for trials. Ask the oncologist for best next steps. Hope and prayer are our most powerful allies. I certainly wouldn't be here without them. Also look into the alternative avenues to run along side any treatments. When I'm drinking my soursop, green teas, taking black seed and apricot kernel I feel like I'm still helping myself. Obviously do your own research into the alternatives, it isn't one size fits all.

Good luck! I'll be rooting for you!

Molly742198 6 months ago in reply to Wingingit

Thank you

Can’t imagine life without him

BarneyP 5 months ago

I’m with you on this. My husband diagnosed on Easter Saturday. Completely floored us as he turned yellow overnight. Six months on after infected stent caused sepsis, liver absesses and then discitis (painful infection in the spinal disc, and finally C-Diff from 12 weeks of antibiotics, he is at last seeing an oncologist on Tuesday. We believe the cancer has mastasted to his liver and he is very weak and frail. The cancer was not a priority, the infections were. He has to be free of infection to even get palliative treatment. He has been so unlucky. I see him fading before my eyes and I feel powerless to help him. It all feels very surreal and I’m not ready to face the future without him. All of your concerns ring true with me, I feel we’ve been riding a roller coaster without end. It’s a cruel and awful disease. I just can’t bear him suffering.

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