Dad has terminal liver cancer- any experience please?

[KittyConCarne]

Not quite sure why I'm posting, but I'm reading alsorts on Cancer Research UK websites etc, and not getting the info I want/ think I want.

My lovely Dad is mid 70s. He was diagnosed in July 2018 with liver cancer (single tumour at 5cm) and scheduled for ablation in August 2018.

Ablation operation started and then stopped as multiple tumours discovered.
Told it was terminal at that point.

Had chemo (TACE) in September 2018 and December 2018.
CT scans after each showed tumour growth slowing so seemed positive for increasing time left.

CT scan January 2018 showed ascites (increased liquid around liver) had developed. Increased water tablets and weekly blood tests (liver & renal profiles, FBC, Coagulation test) for 1 month, and then CT scan to check ascites progress yesterday.

Yesterday Dad saw consultant after CT in the morning, and they've said the ascites hasn't decreased. Liver function is below 50%. They recommend stopping treatment now/ no further chemo. They said the chemo is affecting the healthy remaining bit of liver more than the tumour now? And that the water tablets are causing him to lose ascites liquid, but that he's losing the "good" liquid along with the "bad" ascites liquid, which is not a good thing?

Dad said he didn't want to ask them any timelines because "how long's a piece of string" lol- typical him.

But I feel like I want to know some kind of timeline- I think? Even if he wants to remain unaware, I'd rather know what time I've got to play with?
He wanted to go some places/ see some things this year, and I want to get booking but not sure how fast to act or whether I'll panic him if I say let's get some trips done/ have some fun.

Cancer research UK website says he would have been classed as:

Stage A at diagnosis in July 2018.

Stage B/ ChildPugh B at discovery of multiple tumours in August 2018, which gave prognosis of 20 months with chemo.

Stage D/ ChildPugh D in March 2019 (yesterday), which gives prognosis of under 4 months.

Do you think that final timeline could be roughly accurate?
Does anyone please have any experience?

The ascitic drain is mainly used to reduce discomfort by draining the fluid build up. Often the patients on my ward find it easier to move around, eat and feel less nauseous after having the fluid drained, making quality of life better.

It's not often the patient will feel pain from having the drain. Some are even able to lay on that side with no issues while the drain is in which I think shows that it can be pain free after the initial procedure. The hole which the tube is inserted is about the same as a pencil, if that. Once it has drained the fluid, it is removed.

There's also a maggie's centre being built at the hospital I work at, so I wonder if your dad is being treated at the same one.

My darling sister died of liver cancer, aged 50. Her timeline was very quick - she died just 6 weeks after she took her first day off sick from work. But she'd been in denial I guess , she didn't want anyone to know .

I wouldn't be planning any trips to be honest. I've worked in cancer care and people start to get so tired and weak . Your Dad's ascites are not going to get any better, and the pressure in his abdomen will cause breathing difficulties. As you've seen, he is napping through the day but can't sleep at night - the ascites will be making that occur. This will increase as time goes on.

If you want his last days to be happy ones, I'd suggest keeping things very low-key. Days out with you, a drive to places he likes , lunch in a nice restaurant then home for a nap. The idea of a holiday may seem like a good one but it could end up being a nightmare , far from home and far from medical care.

The last outing my sister had, was when I took her out for lunch - we got a disability taxi and I put her wheelchair in the back and we went to her house. I'd made a nice little meal - she ate a few tiny mouthfuls and just looked around at her home. She was happy to go back to the hospice after a couple of hours. Sorry to ramble on but this all brought back sweet memories of her .

Sending a hand hold to you - make every day count , but don't try to do too much. Less is more at this stage, I'm sorry.

@KittyConCarne the consultant does write a summary after every appointment and sends it to the GP. Your DF is entitled to a copy if he wants one. This is NHS policy ("nothing about me without me").

Can I gently say this, you sound just like me - you want cold hard facts . Your mother,brother, and even Dad might not be emotionally able to take that level of information . Whats right for you, might not be right for them. I know you feel that because they have buried heads etc , you are the one who has to put her big girl's pants on - but please don't feel you have to do everything , take control, busy everyone along, they just might not be ready to go down that path. ( even though we know they are already on it )

Very good points made by Victoria

Just wanted to say thank you very much to everyone who has posted and shared their experiences so far.
I'm here and reading/ re-reading the advice- just feeling so utterly exhausted by the past few days, so taking a step back to gather myself.
Thank you- truly- I feel not so alone now, just from the kindness shown on this thread- I'm really grateful to you all

My dad died recently from advanced prostate cancer but it was his liver that finally took him from us. As soon as it had reached his liver and he began to experience the build up of fluid he deteriorated extremely rapidly.
My heart goes out to you all, it really does. It is an awful disease

First day since the news on Friday that I've got the house to myself- everyone at work or school/ college/ playschool.
Feel like I've got more of a handle on things now and am sat writing a new list of things that need doing- I decided that even if everyone else is still coming to terms with the new info, that my time is going to be best suited to getting bits in place for my little family to cope/ deal.

Your words VictoriaBun really resonated with me- yes, I wanted cold/ hard facts (even if it occurs to me I'm feeling as though that's callous/ emotionless)- it's right for me right now, but not right for them as they can't emotionally take it/ they're not ready to consciously walk that path.
So your advice was wise and it took me a moment to take a step back and look at myself/ my frustrations.
I'm now deliberately not going to try and "take control & busy everyone along" (because you're right- I felt like someone had to be "taking charge" but actually that's only going to end in tears/ frustration from everyone at this point). However, because I need to feel that organisation/ planning feeling for me, I'm instead going to put some bits in place so that I've got as much sorted at my house as possible so I can be ready to support Dad and the others as soon as it's needed.

Yesterday was productive- had a meeting with youngest's playschool headteacher to check how possible it would be for ad-lib/ last minute extra sessions in the coming months. I've known her for years with all the children going through her school (attached to our infant/ junior school), and she not only said she will accommodate any last-minute requests, but also gave me practical advice on contacting a local cancer support charity for counselling/ advice for me & my younger DC, and also gave me her personal recent-ish experience of losing her close relative to cancer and how she supported the young children involved.

Came home and rung that charity- organised myself an appointment for next Monday. All confidential (so Dad needn't know/ he doesn't want anyone knowing/ but I need some support & professional guidance for me and for how to help my DC cope).

Made an appointment for me to meet with middle DC's school welfare officer, to see what school support will be made available to her. I think she is my main personal concern- she's nearly 9/ sooo close to my Dad/ a very emotional, empathetic, caring child. If I carry out Dad's wishes of not letting the DC know anything at all until he's passed, then I would like professional guidance- how I'm going to explain Grandad's absence when he goes into hospital/ hospice, how am I going to explain my own absence from home when I'm ALWAYS normally at home, how am I going to break the news to her, how am I going to help her to grieve?

Then did a massive shop so that if I start disappearing (days out with Dad or hospital visits if decline is rapid), then everyone will have everything they need at home/ I haven't got to worry about writing lists or panic shopping.
Also bought all the upcoming friends/ family birthday cards and gifts for the next few months so they're ready to be sent/ given out by my other half if I haven't got time.

Then updated our family wall planner/ calendar with everything that the DC are doing with school/ hobbies over the next few months, including drop off/ pick-up times, so that whoever (partner/ MIL/ best friend) can know what needs doing if I'm absent/ don't have time to write notes.

0DimSumMum0 thank you for your message, and I'm so sorry to hear about your Dad
I'm grateful for you sharing your experience- the rapid timeline at this point seems to be similar to what previous posters have witnessed- thank you for letting me know.
It is a truly awful disease, and my heart goes out to you too- please look after yourself xx

Birdie6 thank you so much for sharing your story and for your advice. I am so sorry for the loss of your lovely sister

I think you're right about not planning any full-on trips/ holidays. It took me a few days to get my head around it- back in August with the terminal diagnosis I felt like we should be getting on with big memory-making experiences, but actually Dad wanted to keep normality as much as possible.

Now that we're at this point, I felt desperately that we should achieve some of the things I knew he wanted to do and see in life. But having seen Dad on Saturday and yesterday, plus the phonecall between us last night, I think I'm more sure now that he just wants to do some quiet local things, and not many of them because he's already so tired. Our normal routine is him popping round for teas on a few weekday afternoons, plus him being here for 3/4 hours every Saturday. And despite me suggesting a few little afternoons out, he gently implied that he'd rather stick to the status quo at the moment.

I want to be with him as much as possible, I want to soak up his presence, I want to hear his voice so I can really listen to the way he talks and memorise his mannerisms, I want to hear every story all over again. I want so much from him. But that's what I want to make me feel better. Not what my Dad wants to make him feel comfortable right now. Spending time together in the normal way, on the normal routine of a few afternoons and a Saturday is what he wants. If I turn up at his every day to spend time with him, it will upset him/ ram home how little time we have left, and he's not ready for that right now. It's so difficult to keep things at the rate he wants them to be, when I'm desperately wanting to spend as much time as possible with him. But normality is what he's gently asking me to give him right now, so I will absolutely do that and just hope that we can spend a little few extra afternoons together if he fancies it & requests that in the coming weeks.

Thank you so much for your words and your thoughts- I really appreciate you sharing them with me- you've been a huge help xx

I'm so sorry, KittyConCarne.

My dad died when I was 11, but my grandad got stomach cancer when I was 15. He refused almost all treatment and didn't tell anyone for quite some time. He was an incredible man but very sure that he didn't want to know what was happening to him, he didn't want any painful or undignified treatments, and he didn't want to know how long he had left.

My instinct was much like yours, to get as much information as possible and to start planning things that I knew he wanted to do. He didn't want that. He understood why I did, but he said he had made peace with the things he hadn't done, and he didn't want to spend his last days wondering round places that he'd wanted to see, knowing he was only there because he was dying, and wishing that he'd gone earlier when he'd have enjoyed it more. He didn't want to cram full his last days.

Instead, he pottered around his greenhouse when he could, he watched Moto GP, he'd occasionally have a chat about current affairs or who would win next years GP. He didn't want to talk about his stories or his life, really, he wanted normality.

We recorded him a bit, although not as much as I would now if it was happening again. We took photos. He looks poorly in them, of course, and there's a bit of me that wishes there were more photos of before he did, but they are cherished and I'm glad we have those. We have some recordings of his voice when he was doing normal things; reading books out loud, talking to nan.

Because he had no treatment, he went downhill quickly. He slept a lot at the end, usually fitfully, and we had to help him drink. He did go quietly, and he was ready to, but it was hard. Really hard.

His funeral was lovely, and a lot of his old friends came and told us stories about Grandad in the war and the things they'd got up too, which was really nice. We took cards for people to write down memories they had on, which made a nice scrapbook for Nan.

Nan found it really tough, she was desperate to move out of their home when he was gone. They'd got their affairs in order but she couldn't get past how empty it felt without him there, and how big. She needed a fair amount of company and support.

I don't know if any of that will help at all; but I'm so sorry that you're going through this . Your mum and brother may never really be ready to hear what is happening. Nan wasn't. Grandads other children varied between researching themselves and believing that if they didn't accept that it wouldn't be long, it wouldn't happen. Everyone copes differently, I guess.

Best of luck.

Well you've certainly done everything possible

Anchor - lovely words there, your Grandad sounds a bit like my Dad. He never lets on when he is feeling ill and I strongly suspect if he was diagnosed with something awful he would keep it to himself as much as he could.

Kitty you are doing great, very organised. Make sure you find some space in there for you too, rather than just looking out for everyone else. Having worked in a liver unit, end stage liver disease is hard - for the patient, but also for anyone witnessing it. Find out what you can but try and make sure you are supported too, it's not going to be an easy ride.
Winstons wish is a good charity to help with child bereavement. Worth a look.

Random question if anyone is around please?

Spoke to Macmillan earlier (thank you very much madroid for the suggestion- they were lovely and very informative), and they suggested that I should be requesting a palliative care assessment for my Dad.

I know that Iamnobirdandnonetensnaresme mentioned doing that a few days ago, but I wasn't sure if it was my place really. Partly because I was kind of hoping the healthcare cogs turned by themselves with palliative care referrals (similar to how the midwife/ newborn care "cogs" just kind of go into motion around a new mother- midwife turns up at home shortly after baby discharge etc/ the new mother doesn't organise that herself etc), and I thought that Dad's cancer consultant would have set the wheels in motion for that by notifying Dad's original consultant and GP etc.
Also, because I don't know what Dad's prognosis is- I didn't want to be jumping the gun or pestering people too soon, or indeed if Dad was to find out I've been requesting referrals on his behalf then he will be less than impressed to say the least.

But Macmillan went through their questions/ checklist on Dad's treatments to date plus current symptoms, and said that they did agree that my thinking of rough prognosis being under 4 months is likely to be correct.
When I explained about his night-time breathing difficulties/ appetite decreasing etc, they said that he would definetely benefit from the palliative care assessment being completed asap.

The lady explained that the cogs in theory should all be turning, but unfortunately on occasion they don't turn fast enough. She suggested I contact Dad's GP to provide current symptom info (NOT request data-protected info about Dad), to ensure that the assessment referral is started.
The lady said I could ask for confidentiality, but I'm really worried Dad will find out I've been meddling- he is a proud, private man- the last thing I want to do is have him angry or annoyed with me at this stage.
However, I know he won't go to the GP and say he's struggling- he will just wait until he gets the consultant letter he's expecting etc.

So...my question is, does anyone know how long a palliative care assessment would normally take to be arranged? It's only been 7 days since he was discharged from cancer consultant/ treatment. But it's been 1.5 months since ascites discovered and Dad started reporting worrying life-limiting side-effects to cancer consultant.

I don't want to risk mine & Dad's relationship by being found out interfering if actually he'll be hearing from them in the next week?
But I don't want him to continue to deteriorate and start to suffer if the care assessment isn't done quickly enough either.

Iamnobirdandnonetensnaresme also wanted to thank you for your message, and to send my condolences for your lovely Dad

Your post was so helpful and just the kind of practical plans that I seem to be craving at the moment- thank you.
Dad & I are the photographers of the family- always have been and have driven everyone mad over the years with taking photos at non-events and of seemingly random moments in time. But I am so so grateful for that fact right now, because me having a camera in my hand is so normal that I have hundreds of wonderful photos of him, and it does not scare/ worry him at all that I'm taking more right now of him just reading stories to my youngest on the sofa etc.

I own a camcorder but that is not a normal everyday thing for me to use, but luckily my 8 year old has since Xmas been messing around and making little videos (which my Dad is aware of), so I'm going to encourage her more to do this now when we see Grandad/ use it myself too so I can get some little recordings of them together.

I'm scared of broaching the funerals plans right now with him, because of his determination to be unaware of his prognosis- I don't want to scare him because he knows how hard I've researched everything and therefore knows that I know/ am fairly certain of the timeline.

I'm hopeful that once he speaks to a healthcare professional (palliative care team if they get in touch/ consultant appointment brought forward/ GP calling him in for an appointment?), then he will become more aware of his remaining time limits, and then may be more open to talking about his funeral wishes. He is the most practical, forward-planning individual in the world lol, so if he can start to cope with his realisation then I'm sure he will have definete ideas/ plans he'd like fulfilled.

On the other hand, I was fully involved in the funeral arrangements for my lovely Nan (Dad's Aunt/ slightly complicated family set-up) 4 years ago, and I saw how he felt things should be done/ what he felt was appropriate for a dignified send-off etc, so I feel sort of okay with knowing how to write the style of eulogy he would prefer/ how he prefers traditionality in service/ preferred funeral director/ charity donation instead of flowers etc, plus of course I know his favourite music etc.

And I think over the course of just this first week, I am already becoming more certain and aware of his desires for normality rather than big memory-making trips and events, just like you said I should be aware of.
My wants of completing Dad's original big plans are not what he needs or wants after all when it comes down to this stage, and so long as he's at peace with this new relaxed and normality plan, then that's just what I will do for him.

Thank you for your words- you are so kind to take the time to offer your advice and I appreciate it very much xx

You are in a difficult situation. I couldn't phone my father's GP without him hitting the roof but he does give me permission to speak to doctors/health care professionals on his behalf at times. That may be the way forward if he is not ready to talk to them himself. I usually say something along the lines of 'Would you give me permission to call X? I'm just wondering if there is any support for you and the family, etc....' Then he inevitably gets the phone call or letter that results from that and is pleased I have done it. He can't seem to take the initiative himself, maybe he is scared or doesn't know there are services out there to help him, mostly the latter I think. My mother was also quite stubborn and it was hard to do anything on her behalf and I had to accept that. It was particularly hard to do so before she died but I backed off and am glad I did. What is really hard is accepting that one has to let ones parents make their own decisions, even if you think they aren't making the right ones. As a daughter, I always wanted the best for them, it's natural, but not always what they want. Complicated and tricky and I wish you all the best navigating your way through it.

my heart goes out to you op your story is so similar to my dear dads except his was lung cancer. He had already survived throat cancer and open heart surgery. He was diagnosed terminal in July and died in September. He was a strong proud man and didn't want to know how long he had left.
I was lucky enough to see him every day, he too at the end was breathless (on oxygen) had no appetite and slept a lot. I took him for car rides to the seaside but he would fall asleep. He would eat an ice cream then vomit
Looking back now it was so obvious he was extremely ill, but we were led to believe he had a couple of years left. We were told he could have palliative chemo but he never made the first appointment.
He had a wonderful macmillan nurse who I phoned with questions on numerous occasions,.she.was so.kind.
Dad was worried about leaving me and mum but I was strong (on the outside!) and helped him with practical things. I only broke down once in front of dad, when he was wishing he could.eat his favourite food and got upset
He was my hero, we were so close and I felt privaliged to be with him at the end and hold his hand.
You.have a tough road ahead, be strong for your dad, be with him, hold his hand, say what you want to.say and help him with any practicalities he needs. Anything I can help with, ask away.

Very sorry to hear about your dad.

Both of my parents died of cancer and the timelines we were given weren't very accurate.

With mum we were told 12 months, unfortunately within 12 weeks she had passed away. We had a holiday booked as we thought we had more time, but it never happened.

Giving timelines can give you false hope or it can go the other way.

My advice is just to try and enjoy your time together in the present, don't worry about planning too far ahead. Also don't worry too much about getting everything 'sorted' right now. I didn't sort any paperwork until after my mum had died and I'm glad I didn't waste time fretting Over that when she was alive.

Best wishes

Luscinia thank you- you've summed up pretty much what it feels like. Dad's been really clear from the beginning that he will make his own choice to stop treatment if at at any point he doesn't feel it's giving him a worthwhile quality of life, and asked me to respect that when things start to change.
I thought, yep- that's going to be hard, as I'd want him to grab every chance at prolonging life, but I resolved to accept his plan.

Now though, the idea of him refusing the ascitic drain makes me feel so frustrated although I've been careful not to voice or show that, and I realise I'm going to find it harder to let him make his own decision, when I think it's the wrong one.

Dad's mood has been up & down this week, and he's told me quite abruptly he doesn't want to hear anything again about further possible treatments- he's done with it all/ had enough. I've tried explaining to him that an ascitic drain isn't a treatment to prolong life, rather a method to ease comfort similar to morphine is a method to ease pain. But he's adamant it's a treatment/ got very irritated with me, so I'm leaving it now. Really hoping that a healthcare professional can get him to understand more clearly.

This week has been difficult- for the past 9 months Dad & I have discussed every aspect of his health & treatments/ anything he was unsure on I would research and provide him with a "lay-man's" explanation of what something entailed which he really appreciated/ we talked platelet clotting rates & liver function tests/ tried to make light of & planned ways to make personal care problems less of a stress (Dad found it so embarrassing to pass water lying down after TACE treatments, as you can't sit up for several hours afterwards, so we thought up plans to minimise his discomfort etc)- we've talked down to the tiniest detail for so long.

And then this week, he's pulled away. It's like an elephant in the room. He diverts the subject or gets angry if anything health-wise is mentioned- he doesn't want to talk about any of it- just wants to hear about the kids and my partner's job and politics. The subject is closed. I don't know when he'll let me back in. He has no-one else to talk to- no friends, not his wife, he's alone with his thoughts in his head. I just want to support him- I know him, and now all his questions and worries that we've talked through this past year, are back bottled up.

I know this is what he needs to cope for himself right now/ come to terms with it, I do know that- I want to help him bear the burden, but I know I can't- he doesn't want that from me right now.

I'll just wait and talk about the things he wants to hear about, and wait and listen until he's ready to talk again.

Oh that is tough, Kitty. He sounds very like my dad, who will clam up and get very angry if we push him. All I can say is you know you will be there when he needs it and, in the meantime, give him the pleasure of family life and distraction with the news. You are helping still and in a way that he can manage. Perhaps you could call Macmillan in the week and talk to someone. They are probably very used to people like your dad and may have some useful suggestion.