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.

[SecretNutellaFix]

Starlight- I'm so sorry that your family has this bastard illness to contend with, and all of the crap that come with it.

I hope that your dad does manage to get back to his "area". are you receiving support from macmillan?

[StarlightMcKenzie]

shine If it is any consolation, the doctors were all very positive about what they CAN do and would have been able to if my dad was just not so ill to start with. Basically any treatment now would kill him.

Apparently he also has cancer in his lungs, bones, thyroid as well as kidney and liver but none of these things, they said, are much concern particularly. It's just that my dad is too ill now for treatement. Having caught it early enough in your dad I hope that means the prognosis is good for him. It seems from what I know now that it could well be.

[StarlightMcKenzie]

Unfortunately I don't think we can receive help from Macmillan as they are the ones that messed up the referral to the hospice and didn't even apologise or take responsibility for it. In fact, when things started to go wrong they became less and less contactable.

I doubt my mum would be able to receive their help without feeling bitter.

[onesandwichshort]

I'm so sorry to hear that - my father died last year from a very aggressive cancer. I went to see him and was told he was going home in a few days, he died that night - so I do understand the absolute rollercoaster you are going through. And I know exactly what you mean about wanting to make it alright and not being able to.

[StarlightMcKenzie]

I'm sorry to hear that one. They seem to think the cancer has only been in him since October and the whole brain thing distracted them from seeing it.

He's been in hospital undiagnosed for at least half the time he's had it. I find that very hard to understand, but it won't change the outcome.

[ilovemydogandMrObama]

So sorry. wow, no wonder your head is spinning.

You know, some people do go to hospices to recover, so if you are worried that the term 'hospice' upsetting him and going against his wishes, then perhaps you could explain that it's so he can get the care he needs as he needs intensive nursing.

[StarlightMcKenzie]

Thanks ilove. I told him he's going there for a while. It's the truth.

It isn't that he doesn't know. Of course he does by indicating he doesn't want to know what the doctors say. But given that those are his indicated wishes, I wish that the staff would be a bit more sensitive.

It seems a bit irrelevant now though as the whole thing has become such a drama. I just hope he gets moved tomorrow morning as they promised (but they have been making similar promises for the last 2 days).

[fanjoforthemammaries7850]

sorry you are having such an awful time :(

[Ormirian]

Oh starlight

I am so so sorry.

[StarlightMcKenzie]

Anyway, gotta go and make the 90min journey to the hospital now as it is my turn to do the night shift. My mum doesn't want to leave him on his own overnight since they reduced the observations to twice daily and not at night and subsequently he spent the whole night with his finished drip bleeping in his ear with no-one turning it off.

[amberlight]

they're doing what???? Hell's teeth...

[SecretNutellaFix]

Starlight- I know what you mean about how long they took to diagnose it. My father spent nearly a year and a half going back and forth to the doctor and hospital because he was coughing up blood, and it wasn't until he changed consultant that they decided to biopsy his lung, and when they shifted his heart half an inch, they could see it.

Then it was 2 years of operations and radiotherapy because they kept missing the spread of it. He was told it was terminal 2 months before he finally died, and they decided to try chemo to keep him with us for Christmas. Before they could start the actual chemo he caught an infection in hospital which turned to pneumonia and less than 2 days later, he was gone.

I hated seeing him ill, lying down and with an oxygen tank. That wasn't my dad.
I wish you strength, in the coming weeks.

[goingroundthebend4]

oh stuff it ahve a very unmums net hug.I know how tough it is i lost my dad at 58 to cancer and for a long time they said no its nothing then they found it said its ok its treatable .He died 2 months later riddled with it and like you i found it so hard to suppor tmy mum and wanted to yell its unfair my dad is not meant to die yet and the funeral im going to be honest was very tough especially for my granparents

But you will get through it .I miss my dad and that will never ever change and sometimes i do cry that my younger two never had the close relationship that my older two did .Dd was almost 4 and ds was 16 months .But now i can remember the fun times

[signandsmile]

star Iv'e just clicked on here from the link on the other thread, I'm so sorry to hear that, you and your family are in my thoughts (and I hope that's ok, my prayers too).

[goingroundthebend4]

starlight in teh end luckily my dad had private medical insurance and my mum manged to get him out of the nhs ward and into private hospital .He only had a week more but the differance in care was amazing .and we could stay with him .

[LoveBeingKnockedUp]

Thinking of you and your family. My dad passed away in November after the rollercoaster ride ofcancer. He died at home hours before he was due to be taken to the hospice. We are burrying his ashes tomorrow.

I remember saying on here I can't cope and certainly couldn't Coe with any more, a mnetter replied with the following and it is so true. You will cope, because you have too and afterwards you will not know how you did it.

Just be there as much as you can, can you stay there? X

[Larissaisonline]

Hi Starlight, I am so sorry for you, my father passed away at 64 of a degenerative brain disease, my ds had just been dx'd with asd weeks before so I know exactly how you are feeling. Life can be so cruel sometimes.

Sending you and all your family hugs, lots of love xx

[TheTimeTravellersWife]

Starlight, I have just come from the other thread.

How awful.

I am so truly sorry. I lost my Dad three years ago, very suddenly, out of the blue. Ill for a week, then died. It still hurts a lot.

I sat by his bedside for hours. When he could no longer talk, we just held hands. I am welling up with tears right now, just remembering...we were very close. My Mum sometimes finds it spooky, as I am so like him.

He lives on, always, in my heart.

All you can do right now is to be an advocate, to make sure that your Dad gets the very best care. I once spent all night at the hospital chasing up a morphine drip. It did come, eventually.

I know how strong you are. I know that you will get through this. Even though this is MN, not Netmums, I am still sending you ((hugs)))

[Meglet]

oh God Starlight . ((huge hugs))

Hope you can get your Dad into the hospice tomorrow. Not sure how fast they can work but if the has a hospital patient liason team (PALS?) they might be able to get it moving. FWIW me and my sister got dad into the hospice after some stern phone-calls to his GP shortly before he visited for an appointment, might work if you get a chance to speak to them.

I know what you mean about your DS not being able to have a relationship with his Grandad anymore .

Take care, hope your Dad has a comfortable night tonight. x

[bibbitybobbityhat]

Oh Starlight, I am so very very sorry. What a terrible shock for you all. My father also has terminal cancer but he is 81 and is still fighting. I do think it is much much worse for all concerned in the relatively young . I will be thinking of you sitting with him tonight.

[FourFortyFour]

I am so sorry for you Star and for all your family. x

[BerryLellow]

I am so sorry to hear this Starlight, I'm wishing you much strength and I hope you get the chance to make him as comfortable as possible.

It's so shit, that this can happen to people

Thinking of you too, shiney.

[waitingforgodot]

Starlight, hope you are ok. Be strong x