Dad has stopped eating.

[Cocolapew]

My Dad hasn't really ate anything since the beginning of May. He says he just has no appetite.
He has had bloods done at the GP and then got called for a lot more. A gastric consultant is going to phone him next week for a telephone appointment after he has reviewed the blood results.
I feel that him and my mum aren't being pro active enough. I went around today and he was in bed. I said to my mum that I thought he should be in hospital and she said that she was going to get my dad to phone the GP tomorrow.
She admitted he fell at the weekend but was on cyclizine and was hallucinating on it so has stopped it. If I had knew when he fell I would have phoned an ambulance.
Mum did say she told him he was going to starve to death if he didn't start to eat.
Its such a drastic change in him. He has always been super fit especially for his age.
He hurt his ankle playing golf and then took siactica and has gone downhill so very, very fast
I don't really know what I want from writing this. I'm just so worried and at a loss
I don't know if my mum wants me to take control over the whole thing or not. She's usually pretty on the ball but neither of them even know what the bloods are for or why he's getting a phone appointment.

It's the not knowing whether he'll have treatment or not knowing how long he's got that is very stressful
Just wanted to offer a virtual hand hold

Thank you Bunny

I'm very weepy today, its like a bloody tap turning on and off.
I was up with Dad to give him a new phone and he immediately started crying when I went it.
He said he just wanted to know what was going to happen and nobody was telling him anything. We had a good chat about what was wrong and what might or might not happen.
I spoke to a nurse and she said the Dr and the lung cancer nurse was in with him today and he was very emotional with the cancer nurse.
I think he's finally realised that he's probably going to die soon. His nurse was talking to him for over an hour and he was upset when she was there but she's so lovely and I'm sure it helped him.
Hes due an mri on his brain and spine, possibly tomorrow.
Sorry for rambling on, it's helps me to write it down for some reason.

Oh, @Cocolapew, you are being so strong

It must be a lot for him to take in, and for you. I think it's probably just how sudden all this seems to be, and although you knew something wasn't right for a while, you'd never expect it to be this.
I hope his scans go well and aren't too stressful for him

HI @Cocolapew. Just wanted to say how sorry I am for all the horrid things happening to you and your family at the moment.
I know any codeine/opioid pain killers make my Dad very confused but there never seems to be an alternative. Hope you find some time for yourself. I like the Calm app to take my mind off things and get me to sleep.

I'm so sorry for your troubles, @Cocolapew. IT sounds like a tought time for you all.

Mercenary though this sounds, he should get his affairs in order, before he succumbs to side effects of treatment or to the cancer itself.

Weirdly, the aftermath of a death, is sometimes even more stressful and upsetting than caring for someone who's ill.

If you can try and sort at least some of it out before he's incapacitated, hat would make your life easier for your mum and the rest of you.

Thank you for your kind words.
He had his mri yesterday and it looks like he has encephalitis, so he had his anti biotics drip up and they are doing a lumber puncture later.
He is still chatty but gets tired. The Dr seems determined to find out every single thing wrong with him, which is encouraging.
The care he has received has been great.

Oh Coco just catching up with this thread. Good to hear he's had his MRI and has a very thorough Dr. Not good to hear how you've been doing. It sounds so tough on you.

Hopefully he'll get treated for the encephalitis and he'll be feeling more himself, and the doc will also figure out everything else that's going on and you'll have a good idea of what you're facing and how to deal. The not knowing is tortuous.

Thanks Zebra, as someone previously mentioned it is the speed of what happened that I think was the biggest shock, and as you say the not knowing.
I seem to have turned a corner and feel much calmer today so hopefully that will last.
I really do appreciate everyone who took the time to post

Dad is still in hospital due to the encephalitis, they are working on trying to reduce it. It appears to be caused by a certain type of lung cancer.
Spoke to a Dr and he has 3- 6 months left and will stay in hospital for another couple of weeks while they get all the tests done on his brain.

Oh Blimey, that's tough news for you. I'm very sorry.

Did you manage to talk to the hospice or Macmillan?

Not yet, he's going to be in hospital for a while waiting for tests on his brain, and the lung cancer nurse sees him every day so we can organise it through her when the time comes.
I did mention to my mum she'll need to talk it over with dad, but she'll have to get her head out the sand first!
At least its been confirmed now that there's no treatment going to be offered.

So sorry to hear the news, but I guess now at least you all know and start to deal with it. Don't forget we are all here for you should you wish to let off steam

Thanks Zebra and longtompot.
Dad is still in hospital and disappeared off yesterday for another mri. The Dr was doing rounds when we were there this afternoon and I asked why did he get another mri. She said they wanted to check his spine which was clear but he had a spot, as she said, on his lower back and a large mass in his rectum. They now think the mass is the primary source.
She said they were going to put the camera up and get a biopsy.
Tbh I have no idea why they are doing so many tests still. He isn't getting treatment, he's far too far gone
She seemed a bit taken aback by me asking and said it was to find out where it started and and it might help us understand it all better. Also it might help in his palliative care.
She did say if he didn't want it they would leave it.
IMO it's a unnecessary invasive procedure, but its up to my Dad to decide.
He now has cancer in his lungs, kidneys, liver, bones, lymph nodes, back and rectum and still has absolutely no pain, his stats are perfect. He still isn't eating anything solid and is quiet weak but apart from that you'd never guess there was aanythingwrong with him.

I've just rtft and want to say that I admire your strength and it is so obvious that you have so much love for your dad.
Please remember to take some time to care for yourself as well as your dad.

I hope that he stays out of pain and you have plenty of time with him yet xx

Thank you Houseofvelour, tbh me and Dad weren't particularly close, he worked away most of the years I lived at home. This is the most time I've spent with him. He'll be sick of the sight of me!
I hoping he goes to sleep one night and doesn't wake up, I'm dreading a major deterioration.
I've read back over the thread and I'm sorry that this type of cancer seems to be such a common occurrence, everyone has been so kind sharing your stories.

@Cocolapew
I'm so very sorry to read this. It is hard when patients are so poorly but if you aren't happy with any further investigations please tell the ward. We get this a lot (I do cancer tracking for the NHS)
They often use the phrase best conservative management but they have a duty of care to investigate all avenues but if you think further investigations aren't appropriate please tell someone. If you feel uncomfortable telling the nurses PALS can help you.

In practical terms, have you had a conversation with your dad about where he wants to be? like staying in hospital, moving to a hospice or having "hospice at home"? It's a good idea to do this while he's still well enough to make the decisions.

They will expedite any care plan on a fast track funding owing to how poorly he is and hopefully get things sorted in 48, their target time sometimes it takes a little longer over weekends etc....

My heart goes out to you I've dealt with this professionally and personally and it's so upsetting

Sending big virtual hugs 🤗

I’m so sorry you are going through this as a family. I suspect we will be joining you. My dad is also not eating and his mobility has recently took a massive decline. He also has dementia.

DM is in serious denial she seeks help for single symptoms at a time so the big picture is missed. I’ve called the doctor and they are sending someone out next week to take bloods at the house.

You sound like an amazing daughter. I hope the time you have left brings you all peace and some lovely memories

Thanks @omgthepain. No we haven't had the conversation yet, he wants to be at home from what he's saying. I'm going to ask my mum today what she's thinking, about more tests and what she wants in regards to him leaving hospital.
I take her to the hospital every afternoon and drop her off before I go and park, so they get 10 minutes or so on their own, but I don't think they are discussing anything of importance.
I also go every day to keep up with whats happening, my Dad never remembers and Mum doesn't go and ask. I don't have any problems with discussing his care with drs or nurses, and tbf his care has been great. I just think maybe now it's time to stop investigating.
I'm so sorry you are on this journey too @IHateCoronavirus, the added strain of dementia is very hard.

Hugs thinking of you all, it's tough

I think you are right to question invasive tests. Drs have a tendency to keep on doing everything that can be done

Does he have oncology/ palliative care involved? I'm guessing he is on a general medical ward and that is the consultant's specialism. Do push to get specialists involved as they will often have a better idea of what is useful and not useful.

I guess it can be right to get a 'tissue diagnosis' of what the primary cancer is even after it has spread as it can guide palliative treatments. My mums Drs insisted on an open lung biopsy of her mass which at the time I thought was crazy. It turned out that it was a breast cancer metastasis which meant she could have hormone treatment which successfully kept the cancer from spreading further for quite a long time even though it was already in her lungs, bones and liver and she would not have been offered surgery or chemotherapy. Although there was never any chance of a cure the hormone treatment made her a lot better. She regained weight and wasn't in pain. I still think they could have taken a best guess it was breast cancer without needing that biopsy but it was to her benefit to know.
Admittedly I don't think there are hormone treatments for many cancers eg bowel or lung but possibly if it was prostate cancer the same could apply.

I would possibly caution against the dying at home option. My mum died in a hospice which was her wish and it was the best death she could have had. Very peaceful with all her family with her.

The days before she managed to get a place when she was dying at home were really hard to cope with and I would not wish it on anyone. We had carers in the daytime and a Macmillan nurse but we were on our own a lot of the time especially nights. She was bedbound and couldn't do anything for herself and she would get frightened and be in pain and breathless and we did not know how to help. It seemed a big responsibility to decide to give her extra morphine although we were 'allowed'. We took it in turns to sit with her at night which was exhausting and emotionally draining.

We were all very relieved when the bed came up at the hospice. She was just as happy as the rest of us. She felt much safer there and we could just spend time with her instead of worrying about care stuff. She was only there a few days before she died. She was very confused and distressed the last day and I know we would not have coped

It may be that others have different experiences of course. My nana died at home out of the blue in her sleep which obviously was very peaceful but dying of cancer I am not sure it is so easy.

Going to the hospice is my preference but I think my mum is struggling with the concept because my Dad seems so well still, she won't let him home without a care package though. He hasn't deteriorated over the last couple of weeks at all and I think she's happy thinking that's how it's going to be.
She said to me yesterday she thought Dad thinks he's going to get better, but I interpreted what he said as tongue in cheek.
She also said yesterday why do the Drs always speak to you when they come in but that's only because I ask questions.
He's on a Care Of The Elderly ward, the Dr I spoke to last week was a respiratory consultant, my husband has COPD and he's his Dr, yesterday I'm sure she was a gastroenterologist.
The Dr yesterday said she's starting dad on steroids to see if it helps reduce the mass in his rectum and maybe give him a bit of an appetite back.
I think my brother is going to try to fly over for a long weekend this week so, hopefully, I'll have a bit of back up 🤞