Pancreatic. F**king. Cancer

[cheeriosatdawn]

I've probably offended the powers that be with the title, but I'm in a (very) dark place and it's all I have right now.

My mother was just diagnosed with pancreatic cancer. And by "just" I mean that I learned about the diagnosis about four hours ago.

After some frantic googling, I'm more aware than ever that I know nothing about this disease. I know nothing about treatment, I know nothing about when it makes sense to skip treatment and make the (oh God) last months easier. I. Know. Nothing.

I don't even have the right questions to ask of her doctors.

And, of course, I'm devastated, which means that, well: I'm even more gormless and useless and unhelpful.

But then I go back to google and what I read is basically that my mother will be gone within the year. That this is, no matter what we do, my mother's last Christmas.

God. The writing of that is unspeakably, well: unspeakable.

So: mumsnet: am I unreasonable in feeling that this is just a death sentence for my mother? Does anyone know anything about this appalling diagnosis that they're willing to share?

I'm so sorry. I just joined mumsnet to post to you. Two weeks ago I was in the exact same position, except with my dad. I'm afraid I'm no wiser. I've still not found the right words. The shock was unbearable but I wanted to send you a hug.

I've been asked not to say anything yet to extended family and friends. I know it's their way of dealing with things. I want to respect that, but at the same time I'm carrying it inside like bubbling lava.

I'm grateful for the people on here who post good advice and information. It's hard not to Google. I'm not saying it's easy not to panic as your world seems to crumble around you. In the last few days I've spoken to Macmillan. Even the Samaritans when I needed to. It is overwhelming, but when you've had some time, it may be worth calling those numbers to find out more. I wish I could tell you something more helpful. x

Oh, Cheerios, I'm so sorry. Hugs and flowers and loving thoughts for you and your mother.

Cheerios, whatever your mum is going through at the moment, she has the 'gift' of being strong or in denial or whatever else she feels - and she can be that in 'the moment' because it's happening to her. She doesn't have to pussyfoot, she can just be herself because it is about her. In a way, it's an enviable position because for her loved ones, ie. YOU and your family, you're left in absolute shock and distress at the prospect of not only losing her, but also that you will have to witness and go through the illness with her for as long as she has. That's a double-whammy.

I'm not sure the above makes any sense and I don't want to distract in any way but I'm in a similar position to your mum but I'm waiting for a diagnosis (not cancer). I feel fine, happy in myself but I caught my husband crying and it brought me up sharp. He's in the same position as you, having to be strong, try to mop up any possible sad feelings I might have (but don't) whist putting his to one side. I guess that's you too?

I am sending the most enormous and heartfelt prayers and best wishes your way. Much love to you, Cheerios, grab support from wherever you can and do whatever gets you through.

So sorry you're going through this - I know people say that words don't help, but I really think they do - at least, they do a little bit. My mother has just been diagnosed with stage IV cancer and, while I haven't posted about it on MN yet, I have found that just being on here and reading what others are going through - staying so strong and being so supportive of each other - is really helpful.

I am absolutely terrified and it's horrible and all far to real - I know you'll be feeling all that and more too. Please PM me if you want to chat about just how shit it all is - I could use the company! (and that goes for you too sarie2468 and anyone else in the same/similar boat).

Im so sorry for you. Heartbreaking news.

I have one piece of advice, learned too late for my dear girl. If the recommendation is to treat with chemo. Insist that they biopsy the tumor and genetically type it. Over the last few years they are finding more and more that cancers respond to drugs based on what genetic mutation has caused them, rather than based on what body part they are found in. Once you know the genetic mutation, they can pick the chemo regime for that mutation. I’m in the US, and round us it is just becoming the standard of care, but its not consistently offered yet.

www.foundationmedicine.com

Is one company that I know that is reliable, but there are many more out there. If you look at their web site it may inform you enough to ask the relevant questions to see if anything is available on the NHS

An absolute bastard of a disease 💐

All I can suggest are practical things. Keep a notepad & pen with you at all times to jot down questions as you think of them and to take notes when you speak to medical staff. Speak to your boss as soon as possible to ask what your entitlements are to special leave/Flexi to allow you to attend hospital appointments etc. Start batch cooking and filling up your freezer so on the days when you just can't cook, you have one less thing to worry about. Do you have DC and are they old enough to take on more responsibility for household chores? Join the forums and access every last bit of support available to you. On the days when you feel like you absolutely can't cope with it any more, take things literally one minute at a time. Sending virtual and very un-mumsnetty hugs.

My dear ex-FIL (I divorced his son, but cares deeply for him) was diagnosed with pancreatic cancer that had metastatised to his liver. He lived almost another 3 years - so it is not a given that this is not your DM's last Christmas.

Let her know how important she is to you - that is what truly matters.

Boring post here but you must have a look at Personal Independence Payments for people with a terminal illness - gives financial support to cover costs and support where necessary. Apply for disabled parking space and blue badge too xx

That charity www.pancreaticcancer.org.uk is brilliant, make good use of it. Personally I think saying don't Google is like saying don't read books - some people like to be informed, some don't. But this can be a complicated form of cancer in that there are great many variables and types, some more aggressive than others and for that reason Google might be overwhelming you with information that's not relevant to your Mum's case.

Life is shit sometimes, tomorrow will bring a sense of purpose, get yourself as informed as you want to be and we will be here when you get back.

My dad was diagnosed with pc in may 2014. He had chemo from June 2014 till July 2015, the tumour shrunk 3 cm and he had a chemo break for a year as the cancer was stabilised and the chemo was very hard on him.
He started back on chemo in June 2016, this time the chemo didn't really work and he passed away in November 2016.
However don't read the statistics as they make horrific reading. Pc is one of the cancers no one knows about and the survival rates are very low, saying that there are options such as whipples where they remove the pancreas which do have good results.
Try not to worry until you see the consultant and find out the treatment available as it will depend on the site and the size of the tumour.

If you are on Facebook there are some very helpful and supportive groups on there, especially families in support of pancreatic cancer awareness.

OP, I am so sorry I have no advice, just wanted to send my best wishes to you both and I will genuinely be thinking of you.

My lovely mum gave it her best but died of lung cancer aged 55, 1 year almost exactly after diagnosis. Before she went, she made it very clear that she felt she was just unlucky, and that people beat the odds every single day (she had an annoying habit of being right :-) Hoping your mum might do the same. Repeating myself, but thinking of u xxxxxx

I'm so sorry it's a bastard disease

So sorry to hear this OP. A colleague of mine has just in the last couple of weeks been diagnosed with metastatic pancreatic cancer out of (what seemed like) nowhere. She had had a bit of an upset stomach on holiday recently, but nobody was expecting such a diagnosis.

What a shock for you. Best wishes to you and your mum

My grandma was diagnosed with pancreatic cancer this summer. I am so sorry your mum has too.
Talk to the consultant.. can she have treatment? It all depends as to the degree I guess.
For my grandma it was too advanced (and she wouldn't have wanted to go down that route) but we had time to spend with her making new memories and a lot of support from the palliative Care team. I am very happy to answer any questions either here or through pm as to our family's experience... but in the meantime

Hugs to you OP , and anyone else going through it with loved ones.

I'm so sorry you've had this news. It does come as a shock.

My mother was diagnosed with pancreatic cancer almost seven years ago. We were all in a state of shock. She was able to have surgery, and lived on for nearly two years. She spent time with people she loved, and doing things she loved, as much as she could. I spent as much time with her as I could (I live several states away--I'm in California, my parents were in Kentucky).

I hope you are able to spend time with your mum, and also find someone you can talk to as you walk through this. That's important.

Sending kind thoughts.

One of the things I personally found hardest to deal with was my mum's refusal to acknowledge the severity of her condition. She was very into alternative therapies and spent a good £50k on them in her last couple of years - she fell prey to a few charlatans who convinced her they would cure her, she truly believed it despite having a type of cancer that's always terminal at her stage. It didn't help that she seemed so well all the time, other than around her chemo treatments, until the last couple of months. At times even I wondered whether they'd made some sort of mistake since she really didn't seem as ill as you'd expect (obviously a blessing). On the one hand I was reading she'd be dead within 6 months, on the other she seemed okay - I couldn't process it.

I had to let her process it her own way, but it hit her so much harder when she realised she wasn't going to get better. She was in complete shock, she didn't believe it would happen. The whole thing was utterly heartbreaking but being there for her throughout her illness is one of the most important things I've ever done and it was the first time we'd ever had a really close relationship.

Everyone deals with this differently - I wanted to know as much as possible, she wanted to know as little as possible. I knew a lot more about it than she did, which may well have been for the best.

My mum was diagnosed a year ago (turned out to be an incorrect diagnoses - due to drinking her enlarged pancreas was confusing to read on the scan. She was quite ill at the time).

I'm not articulate enough but just wanted to send thoughts. At the time my mum just didn't want any more tests investigations or treatment which I found so hard to deal with.

lost my mother to pancreatic cancer in 2012. She declined any treatment (was mid 70s) because it was only going to prolong her demise (rather than cure). Doctor said 3 months but she was with us for 6, and passed away at home without spending a night in hospital. Whilst it was grim and miserable I do feel it could have been a lot worse - whilst she experienced quite a bit of discomfort there was little serious pain for her, and she remained lucid right up until her last few hours...

I’m really sorry OP that you and your Mum are going through this.

My Dad had pancreatic cancer.

The questions to ask is - is it operable? This will depend on what part of the pancreas the tumour is
How far along is it? - this is the stage it’s at. Sadly pancreatic cancer is often found too late.

I’m not sure what drugs/chemos might be available but definitely push for it and fast. Trials can provide some of the best drugs.

My MIL was told she only had 6 months and lived much longer thanks to the many trials she got into.

((((((Big hug)))))

Does she have secondaries OP? Often pancreatic cancer is caught after it’s spread, though this may not be the case with your mum.

Continuing to send you love at this horrid time. Feel free to message me if you have any questions, or just fancy a moan.

We've just gone through this, sadly. My Dad was diagnosed with an extremely aggressive form of pancreatic cancer at the beginning of May, and sadly passed away at the end of July. The time we had was an absolute whirlwind, and I'm just beginning to grieve now (sadly, since then I've also lost two other family members).

For me, Google helped. I needed the cold, hard information and facts in order to give me a sense of being 'prepared' (hollow laugh). It meant that I knew what was happening at every stage, even though that was painful too. My mum, on the other hand, chose to read and learn very little, which helped her to get through. Do what's right for you, because getting through is the most important thing. I had to learn not to share what I knew with my mum, and she learnt not to push blind optimism on me.

Take support where you find it, and don't feel guilty about taking time to look after yourself too. Whatever happens, cancer is a process that doesn't just affect the person with the diagnosis. We spent every weekend my dad was ill at my parents' house, but there were a lot of cuppas spent sat outside in the garden. In the bad moments, take life 10 minutes at a time. Kindness is the most important thing.

Whatever the outcome, I wish you luck, and a lot of love.

It’s a truly terrible, devastating disease.

So sorry x

It is a shit disease, without a doubt. So cruel. It is rare for it to be diagnosed in time for surgery (whipple procedure) to be possible. There are some clinical trials around still I think and there's a clinic in Germany that will sometimes operate when the NHS won't, with varying results.

I was touched with this cancer earlier this year and couldn't help but google and read everything I could find. I spent hours and hours reading and crying at peoples stories. I should advise against you doing the same but of course you will, it is hard to resist, you want all of the information that you can get which is understandable. Try and stick to macmillan and the likes.

Has she been started on creon or anything? That really helped my dad at the start. You will have to be prepared to advocate for her, it sounds like she will not be one to ask for help so you will need to be prepared to push for her to get medication to help make her comfortable.

I am so sorry you are going through this, it is truly shit