Father diagnosed with Pancreatic cancer (stage IV)

Cuttlefish

Hi all,

My father was sick for s number of weeks his GP diagnosed diverticulitis and gave him buscupan etc. My mother nagged him and he went back to GP who sent him to Ardkeen, Waterford.

Spent hours in AE who at midnight after a scan sent him home. Then on the next day, a Tues, they called him back in for some more tests and told my dad it looks as though it is pancreatic cancer stage IV with it also in liver and lungs. They then admitted him in for a biopsy.

My dad , who is 77, was sent home in mid Nov and told he would be called for the results.

Got a call to go to oncologist on Dec 6 and my dad walked into office and oncologist looked at my dad and said how are you? My dad replied I don't feel great - oncologist replied I can see that and proceeded to say that they WERE going to start chemotherapy on the following Monday but after seeing him said you would not be able for the treatment so we are going to make you as comfortable as possible and that was it.


My dad I think didn't really take it all in and asked a question, my mother can't remember exact words, to which oncologist replied dunno could be weeks/ months. That, it seems, was the end of the conversation with oncology department!

Now unfortunately my dad had a fall in the hospital on Dec 6 on way to oncologist and so was admitted into a Med ward. They did tests such as heart echo etc and checked him out in relation to the fall. All ok in that respect. During his time there I asked twice to see the oncologist but never happened. All we could meet with was the Med doctors and they were helpful but I wanted to ask the oncologist some questions. I couldn't.

There was a delay in releasing my father as home carer was requested but it was refused so we eventually took our dad home last Friday and we managed best we can.

It is so hard when he says he doesn't want to die...how do you respond to that. I told him i don't want to die and that we will make him comfortable.

Need to know had anyone else had a loved one or friend with pancreatic cancer. I know you can't predict exactly but would like to know if, after diagnosis, how long we have or what to expect

Pain management is what it is all about and trying to control that at home with oxycotin and oxynorm. Palliative care come in every five days and besides that there is no other support ...yet

_Brian

Sorry about your dad.

Ask the palliative care team what their thoughts are.

They are dealing with patients like your dad all the time and should be able to give you a good guide what to expect over the coming weeks/months.

We found them excellent in our dealings with them and really it is them you will come to rely on more and more.

Realt Dearg Sec

I'm so sorry to read this terrible news OP. I don't have any advice with this, unfortunately, and I'm not sure how I would cope with what you and your family are facing into. I hope you are able to stay strong for your father, and that you have people around you who can help when you aren't able to be strong. My mother had a very serious cancer diagnosis a few years back, given very little time to live. Miraculously she recovered so we were lucky, but it was the hardest time in our lives. I'm sure anyone reading this will be wishing you the very best.

lfen

Hi OP, very sorry that you and your family are going through this. I had the misfortune of losing a family member to cancer a couple of months ago.

Like you, we found that there was very little support right until the end. We learned that unless you demand things, manage the hospital staff on an hourly basis and in some cases, cause a fuss, you don’t get prioritised so please take that on board. We were public not private so bear that in mind.

It’s very hard to hear someone you love struggle with a terminal diagnosis. My advice would be to have a very honest and open conversation about what part of passing worries them. It’s a tough conversation but can be very worthwhile. In our case, it was the thoughts of possible family feuds and also the thoughts of neighbours who never said hello coming in to see our loved one laid out for a nose lol. Money for funeral arrangements was also a big concern, which was surprising and an easy one to remedy. We talked each fear through and the difference it made was amazing.

Our diagnosis was stage 4 lung cancer. The golden question from when we got the diagnosis was how long, but unfortunately you just never know. We had 1 round of chemo under the belt, sailed through it tbh and a week after chemo, she took a turn and was gone within 3 days. From diagnosis to passing, we had 7 weeks. That’s not to say you won’t get much longer.

Enjoy every day you get together and best of luck.

Cuttlefish

_Brian wrote: »

Sorry about your dad.

Ask the palliative care team what their thoughts are.

They are dealing with patients like your dad all the time and should be able to give you a good guide what to expect over the coming weeks/months.

We found them excellent in our dealings with them and really it is them you will come to rely on more and more.

I have asked for their thoughts but all reluctant to give any clear indication - one person gave a pragmatic quote - "Long weeks, short months"

I found oncology once the diagnosis was no further treatment more or less push the patients folder to palliative care department and have nothing more to do with the patient

I haven't seen the so called excellent care that palliative provide - yes they are there but haven't seen great support - they call in review pain management diary that we have been keeping, ask a few questions then leave.

Feel we are on our own at the moment with this journey

Cuttlefish

lfen wrote: »

Hi OP, very sorry that you and your family are going through this. I had the misfortune of losing a family member to cancer a couple of months ago.

Like you, we found that there was very little support right until the end. We learned that unless you demand things, manage the hospital staff on an hourly basis and in some cases, cause a fuss, you don’t get prioritised so please take that on board. We were public not private so bear that in mind.

It’s very hard to hear someone you love struggle with a terminal diagnosis. My advice would be to have a very honest and open conversation about what part of passing worries them. It’s a tough conversation but can be very worthwhile. In our case, it was the thoughts of possible family feuds and also the thoughts of neighbours who never said hello coming in to see our loved one laid out for a nose lol. Money for funeral arrangements was also a big concern, which was surprising and an easy one to remedy. We talked each fear through and the difference it made was amazing.

Our diagnosis was stage 4 lung cancer. The golden question from when we got the diagnosis was how long, but unfortunately you just never know. We had 1 round of chemo under the belt, sailed through it tbh and a week after chemo, she took a turn and was gone within 3 days. From diagnosis to passing, we had 7 weeks. That’s not to say you won’t get much longer.

Enjoy every day you get together and best of luck.

Yes I agree we only found out things by asking and asking, yes my father is a public patient. My parents couldn't keep their VHI subscription on a state pension.

I would like to ask the oncologist how he came to the decision that my dad wasn't able for chemotherapy - was it the biopsy results or from literally seeing him as he walked into his office on Dec 6th

My dad is home now 9 days and he hasn't deteriorated in any significant way since his return home, he is eating very very little though

Like you and your relative will it be my dad will take a turn for the worse and go down hill rapidly?

Hard to tell, hard to watch at times

_Brian

Cuttlefish wrote: »

I have asked for their thoughts but all reluctant to give any clear indication - one person gave a pragmatic quote - "Long weeks, short months"

I found oncology once the diagnosis was no further treatment more or less push the patients folder to palliative care department and have nothing more to do with the patient

I haven't seen the so called excellent care that palliative provide - yes they are there but haven't seen great support - they call in review pain management diary that we have been keeping, ask a few questions then leave.

Feel we are on our own at the moment with this journey

In many ways that’s it.
The eir visits will increase in frequency as the situation progresses but for now your dad is best cared for at home by family.

Taltos

Can you reach out to your local cancer support group and have a look on facebook. My OH found both of these resources amazing especially the local group.
In Waterford there’s the Southern Eastern Cancer Foundation / SOLAS Centre in Williamstown, Daffodil Centre in Waterford University Hospital, bus service runs from Ardkeen into the university.

lfen

Cuttlefish wrote: »

Yes I agree we only found out things by asking and asking, yes my father is a public patient. My parents couldn't keep their VHI subscription on a state pension.

I would like to ask the oncologist how he came to the decision that my dad wasn't able for chemotherapy - was it the biopsy results or from literally seeing him as he walked into his office on Dec 6th

My dad is home now 9 days and he hasn't deteriorated in any significant way since his return home, he is eating very very little though

Like you and your relative will it be my dad will take a turn for the worse and go down hill rapidly?

Hard to tell, hard to watch at times

It does sound like the oncologist made a call based on just looking at your father. We we were initially told by the oncologist that chemo wasn’t an option, just to keep her comfortable. She had a follow up visit a week later and was told chemo could start within days. So call the hospital and ask to speak with/meet with the consultant. Maybe when you speak with him you will find that chemo isn’t an option but at least you will understand why.

I found the more info we had the better.

Cuttlefish

My father passed away today at 14:50hrs

He developed terminal agitation in new years day and went down quite rapidly from there

His passing was peaceful thankfully

MintyMagnum

Cuttlefish wrote: »

My father passed away today at 14:50hrs

He developed terminal agitation in new years day and went down quite rapidly from there

His passing was peaceful thankfully

Very sorry to hear that Cuttlefish.

punisher5112

Very sad, very hard I'm sure to take in and obviously horrible anytime but so close to Christmas.

If like my mum and went asleep it's all I could ask for.

So so sorry and such sad news.

Hopefully family and yourself are doing ok under the circumstances.

Mean Laqueefa

Cuttlefish wrote: »

My father passed away today at 14:50hrs

He developed terminal agitation in new years day and went down quite rapidly from there

His passing was peaceful thankfully

Im sorry for your loss, it will be tough. But remember this feeling right now and know it will change. Reach out to someone, he is still there within you and that wont ever change.

Cuttlefish are good at adapting, hold close what you hold dear.

hit me up or many on this forum by PM if its even just to rant.

Realt Dearg Sec

Cuttlefish wrote: »

My father passed away today at 14:50hrs

He developed terminal agitation in new years day and went down quite rapidly from there

His passing was peaceful thankfully

I'm very sorry to hear your news, but I'm glad to hear the end was peaceful. I hope you and your family can take time to grieve together. Remember to take time to take care of yourself as well in the coming months.

And thanks also for sharing with us. Please feel you can do so again any time you need.

Thespoofer

Very moving read. Sorry for the news your Dad has received.

Mod: Please read the thread before responding; OP's father has passed on.

Thespoofer

Thespoofer wrote: »

Very moving read. Sorry for the news your Dad has received.

Mod: Please read the thread before responding; OP's father has passed on.

Very sorry for your loss. Also please accept my apologies if my earlier comment has caused any upset.

lfen

Cuttlefish wrote: »

My father passed away today at 14:50hrs

He developed terminal agitation in new years day and went down quite rapidly from there

His passing was peaceful thankfully

I’m so sorry. Such an awful illness. Tough road ahead for you. Surround yourself with people who love you and you them. Mind yourself.

Masala

Cuttlefish wrote: »

My father passed away today at 14:50hrs

He developed terminal agitation in new years day and went down quite rapidly from there

His passing was peaceful thankfully

I am so sorry to read this..... my thoughts and prayers are with you, your family and your dad. RIP

LegacyUser

Cuttlefish wrote: »

My father passed away today at 14:50hrs

He developed terminal agitation in new years day and went down quite rapidly from there

His passing was peaceful thankfully

Ní mhaith liom do thrioblóid; I am sorry for your loss.

My mother died from cancer complications a short time ago, at almost the same age as your father. One thing I would say is that the standard of care she got as a public patient was generally very high, including the quality of information. The teams who looked after her - in three different hospitals - were really honest and open with her and with us, yet at the same time they were kind and sensitive. I'd like to think that everyone in our position would get the same standard of care that my mother got, but sadly it seems that it's not always the case, and that your father and your family could have been looked after better.

All the best to you in these difficult days. Tabhair aire duit féin.

Cuttlefish

punisher5112 wrote: »

Very sad, very hard I'm sure to take in and obviously horrible anytime but so close to Christmas.

If like my mum and went asleep it's all I could ask for.

So so sorry and such sad news.

Hopefully family and yourself are doing ok under the circumstances.

Thank you for the kind wishes his passing was quiet peaceful I was alone with him at the time and his passing was as best we could have wished for

The funeral took up so much time and energy these past few days as I had to organise, with the help of the funeral director and priest, the readings, readers, coffin carriers, hotel etc etc it hardly give you time to grieve.

Will hit home in the coming days

Cuttlefish

Thespoofer wrote: »

Very sorry for your loss. Also please accept my apologies if my earlier comment has caused any upset.

No upset caused and sorry for delay in replying been a roller coaster ride these past few days with my dad's funeral it is the first time where I have been one of the chief mourners and it can be daunting

Cuttlefish

RecentBereavement wrote: »

Ní mhaith liom do thrioblóid; I am sorry for your loss.

My mother died from cancer complications a short time ago, at almost the same age as your father. One thing I would say is that the standard of care she got as a public patient was generally very high, including the quality of information. The teams who looked after her - in three different hospitals - were really honest and open with her and with us, yet at the same time they were kind and sensitive. I'd like to think that everyone in our position would get the same standard of care that my mother got, but sadly it seems that it's not always the case, and that your father and your family could have been looked after better.

All the best to you in these difficult days. Tabhair aire duit féin.

So sorry for your loss. I know death is part of our life process and our parents and loved ones do pass on as we must some day but it is tough to lose a parent. It is an end of an era so to speak.

Now I want to update you all on our experience with pallative care and further support we received. The pallative care team did come on board towards the end and we were supposed to have a night nurse stay with us but he died on the day the night nurse was supposed to commence.

The pallative care nurse that attended my father on his final few days was more forthright with the condition that my father was in and explained the terminal agitation that my father had and also the apnoea that was happening with the final minutes of his life, this is where the person stops breathing for a number of seconds and then recommences breathing. It is very disturbing to witness.

She did say he could be like this for a day or so and that the end could occur over the weekend but he passed away with 30 minutes of the nurse leaving. It was a blessing that his pain was over

NIMAN

Very sorry to hear your father passed on so quickly.
At least you can take solace in the fact that it was peaceful.

Take care of yourself over the coming weeks and months, and talk if you have it. I found it helped a lot. Don't bottle anything in.

rubberdungeon

Thinking of you and wishing you hope in the midst of your sorrow and comfort in the midst of your pain Cuttlefish

Cuttlefish

RecentBereavement wrote: »

Ní mhaith liom do thrioblóid; I am sorry for your loss.

My mother died from cancer complications a short time ago, at almost the same age as your father. One thing I would say is that the standard of care she got as a public patient was generally very high, including the quality of information. The teams who looked after her - in three different hospitals - were really honest and open with her and with us, yet at the same time they were kind and sensitive. I'd like to think that everyone in our position would get the same standard of care that my mother got, but sadly it seems that it's not always the case, and that your father and your family could have been looked after better.

All the best to you in these difficult days. Tabhair aire duit féin.

So sorry to hear about the passing of your mother. Almost a month now and to be honest the longest days I have ever faced. We all face these type of dark days but people have said cherish the memories and don't dwell on what if

Realt Dearg Sec

Cuttlefish wrote: »

So sorry to hear about the passing of your mother. Almost a month now and to be honest the longest days I have ever faced. We all face these type of dark days but people have said cherish the memories and don't dwell on what if

Good advice. A neighbour of my mother lost her husband over 20 years ago, and she has never really gotten past asking questions. She convinced herself at the time the hospital had been to blame for his death, and to this day every time she calls over to my Mam, she's drunk and upset and runs through the entire saga again. Two decades of it now. She let the death consume the rest of her life basically. It's one thing to grieve, and I don't think that grieving ever fully ends nor should it, but that isn't even grieving, it's just a compulsion, like picking a scab that would heal if you left it alone.

I'm sorry to hear the struggle you're going through, but to be sure, things will get brighter again.

munstergirl

Condolences on the passing of your Dad.

Pancreatic Cancer is one of those deadly cancers most of the time. From your post you mentioned your dad was a public patient, It really does not matter if you are a public or private patient there is not much the hospital can do when it's stage 4.
Its one of those cancers where there are no signs at the begining, and by the time there are signs its too late. (Some signs poor appetite, back pain, could be anything)

Steve Jobs Apple one of the richest men in the world died from it.

It really is a horrible illness, I saw a friend die within 6 weeks from it.

Look after yourself & rest of your family, think of the good times with your Dad.

Cuttlefish

munstergirl wrote: »

Condolences on the passing of your Dad.

Pancreatic Cancer is one of those deadly cancers most of the time. From your post you mentioned your dad was a public patient, It really does not matter if you are a public or private patient there is not much the hospital can do when it's stage 4.
Its one of those cancers where there are no signs at the begining, and by the time there are signs its too late. (Some signs poor appetite, back pain, could be anything)

Steve Jobs Apple one of the richest men in the world died from it.

It really is a horrible illness, I saw a friend die within 6 weeks from it.

Look after yourself & rest of your family, think of the good times with your Dad.

Yes my Dad was a public patient, my parents couldn't afford to keep up the VHI contributions on a state pension, but as you said once it becomes stage IV it is too far gone and yes hidden. My father had been complaining of back pain, bowel issues etc but doctor was putting it down to diverticulitis !!

Totally agree that it is one of the most rapid forms of cancer. I couldn't believe how rapid the decline was in my father in the last 4 days of his life, frightening

As another poster mentioned have had some times where I felt maybe anger or regret for not being more demanding when asking pertinent questions but I can't leave that be the overbearing emotion that I have.

Cherish memories, pray for them and stay strong

nacho libre

You and others in this situation have my deepest sympathy.

It's tough- a big part of you goes with them.
I still miss my dad most days. Even now if I look at pictures or videos of him I get upset.
I can't help but feeling guilt that I did not ask the right questions at the right time, but i suppose that's a natural part of grieving. It's a cruel and insidious form of the disease because it's nearly always a process of elimination to identify it, so you can get the feeling that you and the professionals are messing up, but that's not the case.