My Dad is 64, has days to live and I'm falling apart.

[StarlightMcKenzie]

That's it really. I just can't believe the last 7 weeks. On recommendation of a physchiatrist he had been referred to for moderate depressoin, he had a brain scan and was was diagnosed with a mass in his brain 6cm by 8cm which through brain surgery at the National Neurological Hospital they managed to removed completely.

I had a reaction 5 days after the operation and we nearly lost him.

Just over week ago he was declared completely cured and plans were made for him to go home with a scan every year for 5 years. They just wanted to check out a dodgy blood test.

The blood test triggered a scan of his kidneys where they found he had a tumour 10cm. This, apparantly wasn't too concerning and he was packed off to the Royal Free for treatment.

2 days later we were told that he had had a scan that had shown the kidney was treatable but the damage that it, and the two brain operations plus drugs etc. had done to his liver was untreatable. He was diagnosed with an extremely agressive cancer too advanced to treat and given just days to live.

I just cannot believe what he has been through. He's barely able to communicate with us now he is so ill as his liver is so enlarged it is making its own toxins which are killing him.

I'm so gutted. He isn't even retirement age. I just don't know what to say to my mum.

[amberlight]

Phew....much thought and prayer for you all....

[bibbitybobbityhat]

Oh Starlight. What wonderful parents you have. I am full of respect for your dmum. Thoughts still with you.

[StarlightMcKenzie]

She didn't have to get a private ambulance (who'd have thought there even WERE such things) as they got it sorted as soon as she ticked of the problems one by one.

i.e.

McMillan Nurse: 'I'm so sorry about your bad news, about not being able to go to the hospice when we said you could. There has been a communication problem. It's really hard isn't it?'

Mum: 'I'm not accepting that. He was told he was going. He's been waiting for 2 days and psyching himself up for the move. Relatives and friends are all booked to visit him there.'

McMillan Nurse: 'Well we've done everything we could and they just don't have any beds now'

Mum: 'I've just spoken to them and they have two beds but he needs to be there by 4 oclock before the reciving doctor goes off duty'

McMillan Nurse: 'we need to get a nurse to clean him up first and there isn't one going to be available in time'.

Mum: 'I'll clean him. He'll be ready in 10 mins. Bleep the registrar to complete any paperwork'.

McMillan Nurse: 'He needs to have a special ambulance with all the resusitation equipment on board, and it is prioritised for sick babies'

Mum: 'Don't be ridiculous, he has a no resusitation order on him'

McMillan Nurse: 'Well, it's transport's fault. They have been saying that they were coming yesterday and they didn't show up. They promised they'd be here at 9am, and then 10am. They really are rubbish, but it is the NHS, what can you do?'

Mum: 'There is no THEY in transport. I'd like the name of a person please and where they are in this building or if they are off-site their address'

(turns out no referral had even been made to transport, and when my mum spoke to them politely they were polite in return and sorted it within the hour).


I honestly don't know why they were talking such bollocks. It was incredibly stressful but then incredibly easy to get my dad transfered to the hospice.

[Al1son]

It's good to hear that he's been moved but such a shame that your mum had to fight so hard. Shame on those who couldn't be bothered to do their jobs properly at such an important time. I thought a recent bad experience my DFIL has had with a Macmillan nurse was a one-off but now I'm not so sure. Perhaps I will make a little more effort to monitor his care now as he too is approaching the end of his life and I wouldn't want him to be left uncomfortable or suffering.

It sounds like your dad's in a lovely place now and I hope you get to spend some good quality time with him over the next few days.

[StarlightMcKenzie]

Thanks Alison. I really am immensly pround of my mum. None of that came naturally to her. She is generally the type who doesn't like to bother people usually.

In a way too, I'm pleased that she had that hurdle to get over and achieve because she has been at a loose end for weeks now wanting to do things for my dad but just not knowing WHAT she can do. To sort that out was a big thing for her and she did it for him.

So sorry you had a bad experience with McMillan Nurses too. I'm not even sure what they are for to be honest. The woman kept coming into the room and throwing her arms around my mum which was totally inappropriate.

She also kept given useless 'updates' to my dad about the hospice situation despite her having been in the meeting where we told the doctors my dad didn't want to talk about what was happening and that we had sold it to him as a transfer to a hospital closer to home that had a posh ward with attentive staff.

Grrrrrr. Anyway all sorted. We are taking him daffodils in tomorrow. His favourite flowers. They weren't allowed in the other hospitals.

[PussinJimmyChoos]

Starlight - so sorry to hear about your dDad

My Granddad had a Mac nurse when he was terminally ill with cancer and she was shit quite frankly so I don't think your experience is isolated. My Gran wanted to be very vocal with her responses to her but at the same time, was afraid of having help withdrawn so it was a fine line to tread

However, the Hospice staff were wonderful and I cannot fault the dedicated and loving care he received there - kept clean, attended too - they were bloody marvellous

Sending you love and strength at this sad time

Puss
xxxxx

[DebiTheScot]

just wanted to say I'm thinking of you star. Sounds like you and your mum have been so strong through this. I am shocked at the treatment you've had. I hope your dad likes his daffodils. -xxx-

[StarlightMcKenzie]

Debs, we've been treated fantastically by the Nuerological hospital (if you can call being there for 6 weeks without them noticing advanced liver cancer) and fantastically at the place he is now.

It was just the week at the Royal Free that was a disaster. I have no idea why. Their stats on their wall show very high staff sickness. Probably there is some staff moral issues.

[5inthebed]

So sorry your parents have had such a rough time getting him to the Hospice. Glad he is there now though and that he is geting some rest.

How are you feeling in yourself?

[StarlightMcKenzie]

Shit. I wish I never had to go to the hospital ever again. Each time I think about it and set off I feel sick.

I don't want to see him. I mean I don't want to not see him either, but I can't stand it seeing him like that.

[MavisEnderby]

I'm so sorry,Starlight.

I agree it is very hard watching a loved one dying:(

(Re transport issue,I know currently it is probably the last thing on your mind,but in the future I would be tempted to put in a complaint.)

Hospices are generally wonderful places,and definitely the "best" place to be for end of life care.

Look after yourself,too.Try to eat and sleep when you can,even though I know it is hard in this situation.

Sending sympathy and strength and unmn hugs xxx

[5inthebed]

It is rough, I've been there myself with my FIL three years ago. I can't offer much advice as the whol time was quite a blur, but I will say, if you can, to take your DC up to visit him,even if it is just once.

to you and your family.

[Northernlurker]

My bil had a crap MAcmillan nurse too. Didn't talk to them enough, didn't say what home hospice options there were, didn't come round when he sad he would, didn't ring bil's daughter (my sister's stepdaughter) who was falling apart because her beloved dad was dying. Didn't ring after bil died on the Sunday until the following Thursday to see how sister was. On the other hand the Marie Curie nurses, district nurses and Macmillan co-ordinator at the hospital (who I rang in despair) were all lovely.
Starlight - I'm so sorry you're facing this. Just hang in there - it's all you can do.

[StarlightMcKenzie]

We weren't really told any options at all. They said simply 'you might want to consider a hospice, do you know of any?'

We said we didn't but we thought there was one attached to our local hospital. They said they'd do a referral, then it started getting horrible and we became focussed simply on getting him OUT of the hospital he was in.

So, he's not at home and he could have been perhaps, and I'm angry about that but so SO glad he's no longer at the Royal Free any more and so close to my mum and brothers now.

[Northernlurker]

Sister had bil at home because he knew he was going to die and expressed that wish. It was hard though. They got good support and made it through but it was hard. If your dad is comfortable in the hospice and hasn't expressed a wish otherwise then I think that's probably the best place for him.

[MavisEnderby]

Would you want him to be at home?Does he want to be at home?

[Northernlurker]

Sorry should say what they had at home:
hospital bed and commode, carer type people coming in to help dress etc (sister did not find that easy or hugely helpful tbh), nurses overnight for a few nights (ditto), the nurses put him on a syringe driver when it was needed to deliver meds to manage pain but also agitation and secretions. This worked well.

[PussinJimmyChoos]

My Granddad didn't want to go into a hospice at all, but his calcium levels towards the end were so high (he had bone cancer) that it was affecting his brain and it was just too much for my Gran and my mum, who lives next door and had a strapping strong DP to help out with moving him, found it too much as well

In the end we pretended that the hospital had run out of beds and that he needed to go to an external hospital ward - he believed it and thankfully, didn't twig as to what was happening

What I will say though, is that his last night was so incredibly peaceful..my mum, Gran, sister and I were there with him the entire evening, sat around his bed, talking about old times, laughing at times at funny things he'd done and crying as well but the overwhelming sense of love around the bed was something that I am positive he sensed and we look back at that last evening and feel no regrets or worry that we could have done anything differently for him

[MavisEnderby]

Puss,that is lovely.

[StarlightMcKenzie]

Oh Pus, that sounds lovely.

Northern, thank you for your perspective. I don't think he is up for another moving drama to be honest and the hospice is quite strange. It is an old vicorian building in East London with peeling paint and even mould in places but it feels like the right place for him. He was a teacher in similar buildings for the best of his years and it kind of suits him being there now.

And I can't fault the staff and care, which is really the reason we moved him.

[MavisEnderby]

Hospices really are marvellous,I think,even if the buildings are crumbling.Like you say it is the good care that is the main thing.

Thinking of you tonight Starlight.

[Northernlurker]

Yes the care is the main thing.

[MollieO]

So sorry to read about your dad. Fwiw liver cancer can be difficult to diagnose. My dad died of it. I knew he was ill but not how I'll and i was the one who went to our family GP to ask her to investigate. I remember going shopping with my mum and dad in the January and looking at dad in a shop and thinking that I was looking at a very ill man. The GP sent him for loads and loads of tests. Every time they came back clear I'd industry he had more tests. Eventually liver cancer was diagnosed. He died four months later aged 67. We has been told that he could live for years. He had retired in the December so no retirement at all. He worked 6 days a week for 53 years.

It is nearly 14 years now but not a day goes past when I don't think of him and miss him. Somehow you do get through it. The only comfort I have from the time he was ill is I know I couldn't have done anything more for him. I spent time with him and bollocked the hospitals, consultants etc if there were delays in scans (he was beyond any form of treatment).

Thinking of you and wishing you all strength to cope.

[StarlightMcKenzie]

Thank you MollieO, that sounds tough. My Dad's cancer spread from his kidney. He has a massive tumour in his kidney, but only one, so his body continued to function okay until it spread to his liver.

Being in hospital with all the brain stuff meant that they never made demands on him that would lead them to need to investigate other stuff (As I understand, but still struggling to figure out how he could be that sick for 6 weeks without them noticing).

[Becaroooo]

star

Really sorry to hear the news about your dad....no great words of comfort I'm afraid, just that I am thinking of you, your dad and your family

xx