Dad deteriorating so quickly

[FSteph]

We found out about a month ago that my dad has lung cancer that’s spread to his liver and brain as well as the second lung. When we initially got this news he was totally fine except some stroke like symptoms that urged us to take him to A+E. We are still awaiting full pathology from biopsy but in the 4 weeks since first being told about the cancer, my dad has completely changed. He is frail, thin, unable to support himself properly, struggling with basic activities like going to the toilet, dressing etc, and is sleeping almost all the time. He has slightly better days where he is dressed and can go out for say a meal, but they completely floor him.

he’s now saying he feels his time is running out. He’s also lost his appetite in the last few days which seems sudden as the steroids he was on were originally making him ravenous.

im so scared that the end is near and because we don’t even have a full diagnosis, we’re not linked up with macmillan or anyone yet. To be honest the care we have received has been terrible but at the moment I’m just worried that my dad might be dying imminently.

has anyone seen such a sudden decline? Can things get better from here or is that wishful thinking?

Has your GP been involved? It was my mum's GP that managed the care aspect when she was very poorly. We only got help for overnight care after a couple of weeks do it was tough going though she did get visits in the day.

The other thing you could do is ring adult social care for your area and make an urgent referral. They did a phone assessment for us and we had some equipment.

To add, when my mum got more porky she didn't eat much. Care was focused on pain relief which is the most important aspect so definitely worth asking about. We had the GP come out to do a home visit which really helped them get a sense of mum's wishes and what we needed.

*poorly, sorry stupid typo

To be honest it doesn't sound great. My dad had lung cancer- he was doing well until the cancer suddenly spread to his brain,he passed away three weeks later.
Despite this, everyone's cancer journey is different. We found out as he took a turn for the worse and ended up in a&e where they gave us his diagnosis.
Maybe take him there to speed things up, and I hope he gets better, it isn't game over yet. Xxxxx

No experience but I’m so sorry, FSteph

When I say speed things up- I mean a diagnosis so that he can get the care he needs! And ignore me saying it doesn't sound great at the beginning. I always find everyone has their own experience x Hope you are OK. X

I’m so sorry to read about your dad. He does sound very poorly, have a look online for your local hospice, our local one takes referrals over the or via an online form, they should be able to support you through this difficult time and will be able to support him whilst waiting to hear from oncology X

Ask his doctors to be brutally honest, OP, because with secondaries in liver and brain, the prognosis will be tough. You need to find out your dad's own wishes for his care, and start making plans around practical issues, I think.

The honest answer is that you don't have the luxury of time to get support into place at normal speed, so you have to push push push and be that person.... I spent hours on the phone when my Dad had liver cancer. He was diagnosed end of September, by October was immobile and in a hospice by December. He died in January last year. It was at breakneck speed in hindsight but at the time it felt like slow motion.

I'm so sorry you're going through this. Just make the most of every moment and edited to add in the kindest way, don't worry about him eating. It got really painful for Dad to digest food, and my sister wouldn't let it drop so he got really stressed over it. Get simple soft foods like jelly babies that will keep the mouth moist, and things like ice cream.

OP, I am so sorry. This won’t be the answer you want to hear but make the most of the time you have with your Dad. I’m my experience
when the appetite started to decline the heath went downhill very quickly. I am so sorry for this diagnosis and really hope this isn’t the case for you obviously. But wanted to prepare you to make the most of every moment and make sure you’ve said everything you need to say xxx

In my experience cancer is often almost un-noticed until it gets to a tipping point when slight symptoms turn into a full blown massive decline. For the more stoic people in life who would ignore small nagging annoying symptoms, they often get even past the tipping point before complaining etc and so their decline seems even more rapid.

I am sorry his medical care has been so terrible. On Monday I would suggest you try and dedicate a load of time to making calls and organizing resources to make his life more comfortable in the coming weeks. It’s basically palliative care. Look at hospice, at home options and focus heavily on pain relief that can be increased as needed hour by hour (rather than waiting hours for a phone call from a doctor to prescribe)

You need to get the consultant to give you a diagnosis and prognosis and refer him to palliative care asap. Then you can get local hospice care either at home or in hospice. It sounds as if he doesn't have long, but you need the palliative team to be providing end of life drugs and nursing support. I would advise against looking after him at home as it's a gruelling and potentially frightening process and often involves delays in pain meds being administered. Sorry to be blunt but time is off the essence. Does he have a specialist cancer nurse? If she that could be a way to get things sorted asap. Good luck. So sorry your family is going through this

Thank you all so much for your thoughtful and honest replies. I truly can’t believe that in 4 short weeks my dad has gone from one person to another. It’s heartbreaking to see because he can’t believe it either, and I think he feels devastated, embarrassed and just disbelief that this is happening to him. Not sure how my mum is coping either - she’s gone from working as a lawyer to a full time carer, having to deal with seizures and all sorts of terrifying new things that she’s not qualified to deal with emotionally or physically. The whole thing is horrible and I have so much empathy for the many, many people who have to go through this in any form. Sending you all my love and thanks. These forums have become such a comfort to me.

🩷 I am so sorry you are going through this. I have been there. My mother died a month after a diagnosis of stage 4 lung and liver cancer.
You don't have biopsy results yet, though, so he may not be at that stage. He might be able to have chemo. When did they say the results would be in?

I second the recommendation to get palliative care in place.

I'm so sorry. I'm afraid that in my experience with such a late diagnosis there will be very little time.
This happened to my dad. E had some strange attacks like seizures and went to A&E where he was told they were panic attacks. Within a week we discovered he had lung cancer which had spread. I found out later the attacks were something called a focal fit. I've heard several other people have the same experience when cancer has spread to the brain. He was given palliative care and we never got any help from Macmillan.
He lived 5 weeks. The last week in a hospice.

Talk to him as much as you can. Spend time with him while you can

I'm sorry that you're in this sad situation OP. Your poor dad must be blindsided by what's happening to him.

As pp have said, everyone's cancer journey is different, so despite us sharing our experiences, what happens to your dad may be totally different.

I lost my dad in 2017 to pancreatic cancer. His was caught late and was untreatable. He was given six months and died almost to the day, six months later. My DH died 2 months ago. His was secondary breast cancer that returned in his bones and later to his skull and the lining around his brain. With both of them they went downhill pretty quickly once the weight loss got severe. Both were extremely frail and weak.

I too would recommend seeking palliative care from your local hospice. Ours were invaluable to DH and couldn't have done more for us. Not just the medical care for DH, but the practical support too, getting us mobility aids and providing help with claiming PIP and carers allowance. They also gave me a lot of support and counselling, as they realise the carers need the extra help too.

Other things to consider:

• see if your dad's GP surgery has special support available. DH was upgraded to being a priority patient once his illness became terminal. Everything was quicker, from getting appointments to getting repeat prescriptions etc.
• check if your parents have critical illness insurance on their mortgage. We took out both critical illness and life insurance with ours and as soon as DH was diagnosed with cancer the critical illness became payable, giving us a lump sum payment to help with bills.

My husband was diagnosed and died 5 months later. He was fairly ok until the last month and the decline was shockingly quick - his cancer also spread to his brain. I don't know what we would have done without the McMillan nurses - please give them a call or ask his GP to refer him. I'm sorry you're going through this x

Hi all,

thank you again for all the support and for sharing your experiences - it’s giving me a sense of control and direction in this very hazy period. Sadly my dad is getting weaker by the day and we’re struggling more than ever. Marie curie nurses are now involved though and while my dad won’t let them touch him, it’s a comfort to my mum and for us knowing people are checking in and can assist if he needs up while they are here. He’s been having more and more seizures and though he’s eating a little more (ice cream and jelly) he’s now a little puzzled which I’m assuming isn’t a good sign.

this is completely heartbreaking and I can’t help but hope it doesn’t last long. I don’t think he’d ever want to suffer like this or be incapable.

taking each day at a time x

Familiar smells and sounds can often bring peace to people who are feeling cognitively confused. Also small things like nice moisturiser with a hand rub can be comforting as being touched gently can be settling

When my Dad's liver started to fail with the cancer, he got a condition called hepatic encephalopathy which basically means the brain floods with the chemicals/toxins in the blood that the liver stops filtering out. It made Dad very confused, and is very common. I also think the bastard cancer had probably spread to his brain but by this stage, they'd stopped any kind of testing and were just treating his pain.

I think confusion is fairly common in the later stages. I felt exactly the same in wishing it would be over quickly. I'm glad that you've got specialist nurses to help. I'm so sorry - you're in my thoughts x

Hi all,

I just wanted to update and let you know that my dad sadly passed away on Friday evening, 20th September, just 4 and a half weeks after his first symptoms showed and we heard the C word.

I can’t believe how quickly the decline happened in the end. From Monday to Friday things seemed to deteriorate daily and seeing my dad the way I did that last week was completely heartbreaking. My two big brothers had to move in and lift him together to the toilet because he was so weak.

it’s been the hardest month of my life, my I’m so glad that he passed at home with my mum, brothers and I right by his side.

i can’t imagine how I’m ever supposed to feel okay or when thinking of him won’t ache. I’m so sorry so many of you know this pain.

I am so sorry for your loss. That must feel so shockingly sudden. Though I am so glad that you could all be there with him at the end.

I am so sorry for your loss. Sending good thoughts and strength to you and your family.