lung cancer, brain mets, starting deterioration.

[NannyPlumForPrimeMinister]

Hi,

My dad was diagnosed with NSCLC with multiple brain mets in Dec 2014. The first sign was collapse and slipping into a coma. They were expecting to find a brain bleed on the CT scan but instead found the mets. They didn't think he would come round but did after a massive dose of steroids.

He had WBR in Jan 2015, and chemo which didn't help the lung mass, so had radio on it. He was holding and was doing fairly well but a scan at the end of the summer showed the brain mets were all growing again so he had a second round of wbr around Sept last year. I understand this is very rare.

The scan just before xmas showed they were the same size, which we were surprised about to be honest as he was getting weaker and more wobbly.

I live 6hours drive from them but they managed to come down at xmas but left after 2 nights as he didn't feel great. Turns out he was developing shingles.

Over the last few weeks he has started what we initially thought was falling more, but now realise is that he is passing out- some sort of seizure. Previously he had a few abscence attack type moments but not full blown passing out. It happened also when he ventured out a couple of weeks ago and he broke some ribs.

I went up to visit last weekend with one of my children and he is much worse than when we saw him at xmas. He can't get out of bed without help, and can only shuffle to the chair and sits there all day and occasionally shuffles to the toilet or kitchen. Luckily it is a bungalow.

He sleeps on and off all day in the chair. He passed out on Saturday night and banged all his head and cut his arm. When he does this when my mum is alone she struggles to get him up as he has put on a tonne of weight after a year on steroids.

They should be getting an alarm system fitted, but he refuses carers to come in at the moment (mum is at work in day still as they are only early 60's) and won't use a stick/frame etc. The district nurse will now be coming weekly and they have received the 'just in case box'

Anyway, sorry this has turned into a massive ramble. I feel awful as I live so far away, and have 3 small kids so I can't be there much. My mum is an only child so no others there for support, and my dad doesn't really speak much to his side of the family (and wouldn't let mum tell them he is ill- they haven't saw him for a couple of years).

My work are fab and want to do what they can but it is difficult for me to get there. I am in a bit of a quandry, as I think he is starting his final decline, I am guessing maybe a couple of months going by research I have done into performance scores/prognostic indicators (I know we shouldn't google but my job means that I read medical research papers etc so it is not random information).

Does anyone have any idea from the signs how long it is likely to be? Because I am so far away I need to try and plan and time visits around work and family. I am going up again this weekend to be with my mum as it is her birthday, but it probably won't be for another few weeks after that unless there is a sudden change and I need to go up sooner.

I feel awful being so far away and not being able to give the support I want. My dad has no quality of life, he is basically housebound, and can't do much for himself but doesn't like people to help.

Sorry, this has turned into a major ramble but I was just wondering if anyone had a similar experience or any thoughts.

I have also posted this on Macmillan in case anyone has a deja vue moment- sorry!!

[BoxofSnails]

Hi there,
It must be really difficult - when my mum died of ovarian cancer it was just her so she came local to me for what turned out to be less than 4 months at the end. She too was 'young' - 59 - and I was not quite 30 so much like you I guess.

This is my field and in terms of statistics your dad is right at the end of the survival curve already (median survival 5 months from brain mets with WBRT).

How long sounds currently like it would be measured in weeks, possibly not all that many, or he might surprise you again and the weeks may become a few months. People generally deteriorate in steps with plateaus in between and if you are getting a true picture regularly from your mum you might be able to get a handle on the kind of pace of deterioration. Go for your mum's birthday, accepting that it might be the last time you see your dad as he currently is. What happens in the interim is out of anyone's control but we can be sure he will not be as he is, next time. Support your mum. Allow yourself to see him and be with him for you, not just for him or them.

The one thing that shines out for me is that more help at home sounds massively important. Sometimes (switching back to personal experience, not professional) you have to push a bit, and make yourself unpopular. It's eventually usually forgiven. This sounds like something worth doing that over.
Happy to chat as you need.

[NannyPlumForPrimeMinister]

Hi snails, thank you for that swift reply, as you can probably tell from middle of the night posting I am not sleeping well at the moment.

I think you are right, and it will probably be weeks, especially now he has started having (I think) complex partial seizures. I think his KPS and PPS is probably 50 if I am being fairly generous, maybe heading towards lower, whereas up until the last month or so he was probably 60-70.

My mum is waiting for the alarm people to come over the next few days and then I have asked her to ring the care service centre that arranged it to speak to them about someone coming and doing an assessment. She is normally quite receptive to me as I normally say to her that I think she should contact the cancer nurse woman at the hospital etc. I am sure my name is mud with my dad sometimes as I tell her just to blame me for the things that he doesn't want!

She realises that he is getting worse, but I don't know if she realises how short it might potentially be, and I don't know whether to say that I think we might be entering the final stretch.

I feel awful for saying it, but seeing how he is and imagining how bad the next month or so might be, I wish sometimes that he hadn't woken up from the coma. That is more what he would have wanted- sudden and swift. How he is now is his worst nightmare.

Thank you again for your thoughts.

[Lolimax]

Hi nanny. Firstly sorry for you all going through this bastard cancer. I know nothing about your dads particular type, I can only tell you about my mums journey and the lessons I learnt.
Mum had oesophageal cancer and was put on the terminal list (I've forgotten the technical term sorry) and therefore had the Just in case Box in the October of 2014. I lived 100 miles away and was an only child with a somewhat difficult relationship (she was an alcoholic).
Anyway what I learnt was I had to be quite forceful with the doctors to get the support she needed but once the carers were in and they realised her needs they helped to accelerate more care.
Her district nurse was great and suggested a hospice which I accepted and they were brilliant. Mum in the beginning very loathe to accept anything and very hostile (money and people in the house) but I sold it to her on the way that this plan would keep her at home.
She died in January 2015 very peacefully.
Good luck and be your parents advocate.

[Lolimax]

Sorry meant to say hospice provided help at home.

[procrastinatingpeacock]

I second the advice to try to get your local hospice involved, they can provide all kinds of support and advice, and being on their radar at this stage will really help when things get worse. My mum died at home but spent a week in a hospice about a month before she died to try to get her pain meds sorted, and we had carers come from the hospice for the last few days. They are a real source of expertise and I found it very reassuring to know they were involved.

[NannyPlumForPrimeMinister]

Thanks everyone. My mum spoke to the cancer nurse at the hospital and got her to raise the referral with the palliative hospice team. They are coming on Friday and I will have got there for the weekend by then if the flights behave so I can be there.

My mum also spoke to someone today that used the palliative hospice team for his wife and he was singing their praises about all the services they offered, I don't think she realised they would offer massage etc for his big fat swollen steroid legs.

I feel a lot happier now having set a few wheels in motion and getting on the radar.

He has another seizure/unconscious attack just before bed last night. Thankfully my mum caught him as he was about to go and managed to get him on to his knees and support him there until he came round, but then they couldn't get him up so he had to bum shuffle through to the bedroom.

Hopefully I will sleep better tonight.

Thank you everyone for all your support, I have been lurking and reading all your posts for the last couple of months since I came across the board. My thoughts are with everyone dealing with/having dealt with such horrible things.

[Lolimax]

Nanny it might help if you feel you can to say where your parents are as people might be able to signpost extra help your way.

[NannyPlumForPrimeMinister]

The are in North Ayrshire. I am Derbyshire. :)

[Lolimax]

I was kinda hoping your parents were in Wales. Hopefully someone will have some good networks.

[NannyPlumForPrimeMinister]

Hi,
The hospice nurse came on Friday and is going to arrange for a physio type person to visit this week hopefully to assess him. She is also going to keep in touch with my mum so hopefully she can get some moral support from her.

He didn't pass out over the weekend which was great :) but his shingle pain is getting worse rather than better so had doctor yesterday who prescribed a local anaesthetic patch to wear for a month.

I feel a bit better now knowing my mum will hopefully have more support now he is back on the hospice radar and the nurse was fab- got just in case seizure meds arranged the same day.

They don't have Macmillan where they are, the local hospice provides the same service.

Thanks all :)

[whatisforteamum]

Hi Nannyplum i am so pleased you all have support.My dad has the hospice at home team and just in case meds since last june.They have sorted out pain sickness and appetite and numerous infections for him.He now has arthritis in his hips as well as cancer.Mum was told to ring for an ambulance and say he is DNR that way if he falls as he has before they will help but not take him to hospital.:)

[NannyPlumForPrimeMinister]

Just a quick update to say that my dad died in the early hours of Thursday morning after a rapid deterioration starting on the Monday with a series of seizures and falls.

I managed to get a flight up on Monday night and helped to organise a syringe driver as stat doses of morphine were doing nothing. He was thankfully unconscious and unaware from the early hours of Wednesday morning until he died a day later. He did recognise me and my daughter and realised we were there before he losr consciousness on the Monday night.

The district nurses etc were all fab, and thankfully we could look after him at home like he would have wanted.

thinking of you all

[PacificDogwod]

Aw, Nanny, I am so sorry to hear that. My sincere condolences to the passing of your father

I was going to come on with some info re end of life care in Ayrshire, but, alas, too late

Wishing you and your family strength and be very kind to yourself x.

[ImperialBlether]

Oh I'm so sorry.

I'm glad he knew you were there.

[echt]

So sorry for your loss Nanny, but good that you were there at the and that your father knew you.

[BoxofSnails]

I'm so glad you were there, and he was where he would have wanted to be. I'm sorry for your loss - your dad was young, and that tinges your grief. Hope your mum is ok, and be kind to yourself and accept the support you need at this time. Hope you can sleep a bit better.

[whatisforteamum]

Nannyplum i am so sorry your dear Dad has passed away.Im pleased you were there with him.Look after yourself xx

[PunkrockerGirl]

So sorry OP
Glad he was where he wanted to be and that he knew you and your dd were there.
Look after yourself and I hope that you and your family are getting lots of help and support.

[TheMightyMing]

So sorry for your loss , you sound like a lovely caring daughter who has done her very best under difficult circumstances. I hope your mum is bearing up and your father RIP, he'll be in my prayers tonight xx

[ThenLaterWhenItGotDark]

So sorry, Nannyplum. to you and your family.

[SpiceyHoney]

Thank you all, I have name changed btw.

His funeral was on Monday and went as well as can be expected. Ther service was nice and there was a lot of people there. We had a collection for the hospice rather than flowers and got more than £550 so really pleased with that.

At the moment it seems a bit of a relief, I think we all did grieving over the last year before he went but I am sure a different sort of grief for what might have been will sneak up over the next few weeks.

Thank you all for you support on this little corner of mumsnet, and I am thinking of you all and what you are going through