I need some support, please. Pancreatic cancer in DF. Long, sorry.

[mineofuselessinformation]

My DF has pancreatic cancer.
Diagnosed last week.
Stent into gall bladder attempted earlier this week, not successful.
DF has had a bleed which was found this morning. Now having a total of five units of blood and god knows what else. He's really unwell, and for a man who's never really ailed anything in his life has been brought really low, it's worrying that he's so weak.
He faces being sent to another hospital for a different type of stent via the liver.
I'm trying to support my DParents whilst relaying news to my siblings who live overseas, and am trying to carry on working (I don't want to ask for too much as they're very supportive at the moment), so am working mornings, then going to get DM, take her to the hospital (she can't drive that far), and then come home to relay news to siblings and answer questions.
I honestly don't know how long I can go in like this - it feels never-ending (and I've been handed a pack of useful information with leaflets of symptoms, how to get help via Macmillan etc.) DParents didn't want to take it, I didn't either, really.
Has anyone else been here?
Sorry for the long, rambly disjointed post.
I had a thread here before, which I can't face trying to link on the app.

[EmmaGellerGreen]

So sorry to hear this. I have been there with my DF. It is a horrific disease.

[mineofuselessinformation]

Thanks, Emma.
For anyone looking, my last thread was DF and jaundice. I'd be grateful if someone could link for me.

[Greensleeves]

The regime you are living under sounds utterly exhausting :( are you getting any breaks? I'm commuting across the country every few days at the moment in similar situation so I know how knackering it is, especially with everybody looking for you for support and to keep them informed. One of my aunts who lost her dd to cancer last year told me to be selfish - insist on breaks. But it's easier said than done.

I know what you mean about the shocking weakness in someone who has really never been ill. It's horrible to see such a strong, vital person reduced to a wreck. I have to steel myself to go into my dad's room, I've never seen him shaking and grey and clinging to his blankets like he is at the moment. But he's the same dad inside xx

[FranklyMeDeer]

I'm sorry op. I'm just starting out on this with my mum who has just been diagnosed with pancreatic cancer herself, a couple of days ago. She had a biopsy today so awaiting the results of that before we know any more however she already has secondary tumours in her liver and lungs, so it really doesn't look good. She's had abdo pain for a while but originally gp said it was a torn muscle and she refused to go back for weeks. Eventually had a CT scan and was given the results on Tuesday. I'm in shock I think.
I'm off to see her at the weekend. We've been talking on the phone but I've not seen her for weeks.
We're going to have to look into all the McMillan stuff and organise her house etc and I'm dreading it.
I have siblings but mum prefers to go to appointments with her friend. My dad died years ago and she's never had another partner. So she's passing out news to us herself, but if the disease progresses as I've read it will, it's unlikely she'll be able to do that for long. My siblings and I are meeting up at the weekend, we'll need to have a discussion about how to manage it all between us. I'm dreading it, I just permanently feel teary and sick.
I can't really help in terms of what happens as we're only just at the beginning, but happy to offer a hand to hold.

[CarrieMayBe]

I feel so sorry for those of you on this thread currently going through this. I lost my DM to pancreatic cancer 18yrs ago. It's a brutal illness and my sympathies really are with you right now.

Feel free to ask any questions, unfortunately DM didn't have a chance of having any treatment, all they could do for her was provide palliative care, but I'll help if I can. Pm me if you'd prefer.

[frenchielala]

Pancreatic cancer is truly evil and so severely under researched or known. I'm so sorry to hear your dad and family are going through this.

Two pieces of advice.. get a second opinion, do you have private medical insurance or another doctor/hospital who can give a second opinion? I lost my amazing mum to PC and even though she only got 9months after diagnosis the first hospital where she was diagnosed didn't even want to try to treat so make sure you have a few opinions. And secondly try and take some time off work if you can, just give yourself some time.

Hoping for the best for you and your family.

[wowowowow]

To add a different point of view to the others who have experience PC as a horrendous cancer...my dad died of this only 7 days after being diagnosed. He died a peaceful death, unaware that he was dying. It was a "good" death.

He'd obviously had the cancer for a long time and had felt discomfort which we all put down to another medical issue.

[mineofuselessinformation]

Frankly, we're only at the 'beginning' too. DF hasn't even had a biopsy yet as they were hoping to do that when the stent went in (which it didn't of course).
We've been told no treatment is possible as the tumour surrounds some major blood vessels, but were then told it doesn't look like adenoma, which is the 'usual' type of pancreatic cancer, so may be one of the rarer forms which responds better to treatment, but that will still only be palliative (I.e. Life-prolonging).
Greensleeves, it is relentless. But, I've already asked (when offered if I need more time) to have Monday off. How much of an advantage that will be is unknown yet as when DF is transferred to the other hospital, the journey is much longer.

[mineofuselessinformation]

Posted too soon....
It's so lovely just to speak to people who understand. I literally have no-one to offload to. I'm trying to keep a tight grip of my feelings as DParents need me so much.
I guess the time to collapse in a wobbly heap (dramatic emoticon) will be after DF gets home and the pressure is off a little.

[TrishanFlips]

So sorry. My DF died from this disease. I don't think there is much that can be done for it. DF lived for about 14 months after diagnosis. He had Chemo and lost so much weight. Horrible disease.

[mineofuselessinformation]

Trishan, DF has already lost a stone in a month. Apparently to do with his liver enzymes not working properly. ATM, he's not allowed to eat to avoid the bleeding starting again.
A truly terrible disease indeed.

[PunkrockerGirl]

Very sorry to hear your news, OP. My db died of pancreatic cancer earlier this year, it's a horrible disease - I don't agree that it's under researched, more that in spite of extensive research, little progress is being made compared to other cancers. My db didn't really have any specific symptoms until he developed jaundice and then underwent further investigations. Like your dad, the tumour was wrapped around some major vessels so was inoperable. He did have some palliative chemo which gave him a few more months with us. His wife and dc had amazing support from the local hospice community nurses and he also spent about a week in the hospice a couple of months before he died to get his symptoms under control (he wasn't happy about going in, but it was well worth it).
Hope your dad gets home soon, sending you and your family
Please PM me at any time if you need to.

[mineofuselessinformation]

Punkrockergirl, sorry to hear about your DBro.
From what I've been told, pancreatic cancer is one of the most difficult to treat - and I know from experience with one of my dcs that some illnesses are less well-known and less well-funded, which is a crying shame.

[CarrieMayBe]

Despite being one of the deadliest forms, pancreatic cancer only receives something crazy like 1% of funding for research. Survival rates haven't changed in over 40yrs unfortunately.

I'd never even heard of it when my DM was diagnosed. I was only 19 and none of us suspected for a minute that the back pain she was complaining of could be anything so serious. She was eventually diagnosed (after much fobbing off) after a liver scan which showed secondary tumours. My beautiful, young, vibrant mother died just 6 weeks later.

As I said in my previous post, I don't think I'll be much help when it comes to treatments etc but I'm here for hand holding, I so wish I'd had people to talk to outside of my family when we went through it. My friends (with us all being so young) didn't know how to handle me and hid away. Very isolating.

[mineofuselessinformation]

Carrie, I'm standing with you, so you're not alone.
You're right saying that some conditions are sadly under-funded.
I'm sorry your mum so young.

[mineofuselessinformation]

you lost
Sorry. Fat fingers and tiredness.

[vegmum83]

I'm so sorry to hear this OP. Lost my DF to this awful disease a few years ago. The only signs he had was going jaundice, was already at stage 4 and had spread to his liver and lungs, what followed seems to be a blur now of 6 months of hospital visits. He was put in a trial of a new drug which unfortunately didn't do much, I think was just too advanced but was worth a try.
Similar to what others have said, a man who had rarely been ill to have this disease, it was awful watching him waste away.
I think it's something that needs more awareness and funding.
Just try n stay strong and positive OP. Like pp said take time all the time off work you think you need. My workplace was really good with me and think they would've given me more time off if I'd asked. I know you probably don't feel like you should whilst they've been so good but you might wish you had in future. I wish I had looking back.

[CocktailQueen]

So sorry to hear this, Mine. My fil died of pancreatic cancer 17 years ago. It was very quick.

I think it's different for everyone, though - it depends where the tumour is.

Big hugs, and come vent on here whenever you want to.

[TreehouseTales]

So sorry to hear this. I had a thread this last week about my mother who is waiting for a biopsy (has had ultrasound and ct scan). Because she was mentally v unstable at the time we've not had a formal diagnosis yet so we're in limbo. I thought I was going to lose her 10 days ago when. She was in AnE, now she's home and I've no idea what the scans showed yet.

The exhaustion after only a week of.dricing to and from various hospitals though and all the practical details. I feel for you lots x

[mineofuselessinformation]

Sympathies to all of you going through this.
Cancer is a cruel enough disease as it is, but this form seems to be particularly nasty as it has little treatment options available.

[mineofuselessinformation]

I hope you all can feel my arms around you.
I can feel yours around me too.

[GinIsIn]

I am so sorry. We lost my DF 2 years ago - we had about 5 months with him from diagnosis. It's a horrific, horrific illness. It does move incredibly quickly but as some PPs have said, that can actually be a bit of a blessing - it's such a relief knowing my DF didn't have to suffer for too long. We tried the stent and it was unsuccessful, and palliative chemo but it made him so ill we decided not to pursue it, and we were waiting for a spot on an experimental trial at the end. If we had our time again, I think our family would choose to not pursue treatment and instead to just opt for pain management.

Whatever your family chooses, just be together as much as you can and take each day as it comes - thinking of you.

[CarrieMayBe]

I think you need to consider taking time off work OP, especially in these early days. You will burn yourself out if you try and juggle it all and then be no use to anyone. You have an awful lot to try and get your head around, I know I just wanted to press pause for a while when my mum got her diagnosis but life doesn't work like that. I had a toddler myself at the time and it was so difficult to keep going. I couldn't have held down a job too without taking some time off.

My mum was offered chemo, I don't know if the success rates have improved but back then it only offered an extra day or so to her prognosis which seems incredible looking back but we asked the consultant to be totally honest and I guess he was. We already knew from the outset that it was terminal and she was given 6 months max, but more realistically it was likely to be just 3. Mum declined the chemo, she was such a proud woman and there was no way she was prepared to lose her hair when really the treatment offered her so very little. I'm so glad she took that decision and it was made with all of our support. I think she gave up after that, what's the use in fighting the inevitable? So her time with us from then was short, but like a pp said, it was mercifully short as her pain wasn't well managed initially and it was a horrific time for everyone.

Thank you for your kind words op, please know that we're all here for you.

[Stopyourhavering]

Mine, I'm so sorry you're going through this, my db has metastatic bowel ca with liver Mets and I just feel so floored by this,.
It's rather surreal and ironic because I work in cancer research running clinical trials and I mainly cover upper GI / pancreatic studies so I know how devastating the disease and the prognosis is.....so many lovely patients of mine have endured this awful disease and research is sadly underfunded
I hope you have someone IRL you can off load too, if not we're all here to help get you through this awful time and do see if you can take time off work- I'm certainly in no frame of mind to contemplate doing my line of work at the moment

[mineofuselessinformation]

DF looks a little better today.
By this evening he will have received six units of blood. He had lost at least a litre.
He told us he's moving to the other hospital on Monday to have the alternative stent put in. I'm so hoping it goes in with no problems - DF is sick of being prodded and poked.
Carrie, I have the next three mornings 'off' (although I have painters coming at 8 tomorrow - what great timing!), so that's good. I would like a pause button, but at the same time need the next week to be over, everything to go well and DF to be home. It's half term the week after, so I'll be off (but will have exams to mark which is another job to do).
Stop, it's all feeling surreal to me too.
I'm the kind of person who needs to keep busy in a crisis (when XH left my house had never been cleaner!), but I know that I am reaching the point where I'm going to need a break soon. I'm going to make the most I can of the weekend and Monday, and then can only take it as it comes. I haven't even looked into travel times to the other hospital, but I know they're long.