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How do people cope when they have been told they have months left.

(20 Posts)
WhenMarnieWasThere Tue 23-Jun-15 22:26:55

Very sad days here.

DF was diagnosed with advanced cancer in Jan after nearly succumbing to kidney therapy in Nov.

He's had chemo. Which hasn't worked. Apparently didn't have the best of odds for ever working as his cancer wasn't found until it was advanced and very large.
He's not being offered an operation. It's too dangerous. Even palliative surgery to reduce the size isn't an option.
He's undergoing radiotherapy. He doesn't think it's working and it's only palliative if it does.
He's in a lot of discomfort because of where the tumour is.

His oncologist has given him a prognosis of 'months'.

It is going through my head again and again the things he can't do. The fear he must have of the pain getting worse, things progressing. Leaving people behind. I have no actual idea of how he can even begin to cope with it.

He is though. He's getting angry a bit, but I understand that. He's thinking practically about things.

spanky2 Tue 23-Jun-15 22:30:20

I am sure there is counselling available for terminal illness. I am not really in a position to guide you but didn't want to read and run. So sorry for your poor Dad.

whatisforteamum Wed 24-Jun-15 06:04:49

Hi i dont know how patients cope either My mum had advanced cancer in 2007 and was told she had a yr,she is still here after lots of chemo then df was diagnosed with advanced rare cancer 2012 which returned last aug.He to took the chemo again this time the cancer didnt respond he had some radiotherapy.DFs cancer is aggressive and now in his prostate bladder lymph nodes and bones incl his spine,Df also went through an angry spell and was finding fault with everyone and seemed more depressed than ive ever seen him.Now he is using his last few months wisely and seems mostly happier,He has a hospice nurse who he can talk too and has disscussed end of life pain relief and planned his funeral (low key no flowers or headstone said he didnt want to be a nuisance to anyone !!)
Somehow people do seem to cope as its a case of having too.Im sorry you are in this situation as i know how hard it is flowers

TheCowThatLaughs Wed 24-Jun-15 06:57:57

Has your dad got a Macmillan nurse? If not you could contact them on his behalf.

TheCowThatLaughs Wed 24-Jun-15 06:58:26

Sorry to hear this flowers

WhenMarnieWasThere Wed 24-Jun-15 08:18:03

Thank you for your replies.

He has a Macmillan nurse. We are seeing her today.

WhenMarnieWasThere Thu 02-Jul-15 22:32:47

This is so hard.

Dad was getting his head round things. Getting practical things sorted.

Then on Friday he started having a new pain in his hip and trouble walking. This led to a fall. He attended his radiotherapy appt on Mon and wasn't great, but struggled on. On Tuesday he started to show signs of being disorientated. When he went in for his final radiotherapy appt he was seen by his nurse and he broke down. She was unhappy with his condition (as were we) and he was taken in to the hospital.

He had a urine infection.
The medication he'd been given and was taking at a dose he was told he could have was actually toxic and making him ill.

He's been told today that the reason for his pain and trouble walking is that the cancer is in his bone there too and has caused a break.

It's been one month and it's already progressing. Things are being taken away from him over and over it seems - the chance for a future, being able to work, being able to drive, now being able to walk.

It's just so hard for him and hard for us to support him too.

Rosa Thu 02-Jul-15 22:38:48

You poor thing how terrible for you and your family . Wishing you all strength in the time ahead.

myrtleWilson Thu 02-Jul-15 22:45:13

Marnie - so sorry to read this, it is very hard isn't it? My experience was similar to yours and unfortunately I can't offer a happy ending. My mother was diagnosed with advanced cancer in Jan and in Feb her consultant gave her a 12-18 month prognosis with chemo. Sadly she never started chemo and died in March. My advice when your DF comes out of hospital would be try to ensure you get all the caring support you need through macmillan etc - they were fantastic at sending night sitters so family could rest a little from round the clock caring... We also had a hospice at home situation and learnt on the hoof about medicines and who could dispense what - please do pm me if you want more suggestions.

very kind thoughts to you and your family

WhenMarnieWasThere Thu 02-Jul-15 22:59:28

Thanks Myrtle.
This is my fear. That he's going to progress much faster than his prognosis gave him.

On one hand, he's my lovely Dad and I don't want to lose him and want as much time as possible with him.

On the other hand, I don't want him to suffer any more than he needs to.

myrtleWilson Fri 03-Jul-15 00:13:01

am so sorry if I've upset you Marnie. For what its worth, with my mother she remained "herself" up until about 72 hours before the end so there was time with her - but that's what I meant about shamelessly nagging to make sure you get support if you need it so your time isn't eaten up with caring duties rather than just being family..

Much love

WhenMarnieWasThere Fri 03-Jul-15 00:21:37

You haven't. Don't worry about that. I'm the type of person that runs all sorts of eventualities through my head when up against something like this. When he was originally given his prognosis I thought about the possibility of him having longer. But I'd already read on here about people whose parents had not lived as long as their prognosis (which is at best an educated guess) gave them.

So the news from today is sitting like a heavy stone in my stomach, but it's not something I haven't already considered. I'm sad about the situation. And desperately sad for my Dad who is having to go through this and be aware of what's happening.

We spoke with the Macmillan nurse and know about lots of services that we can call on so we do feel that we have a support network there for him/us in the background.

whatisforteamum Fri 03-Jul-15 12:46:50

so sorry to read this marnie its our worst fear isnt it? My own DF whose aggressive cancer can no longer be treated has been planning his funeral and got the house made easiier for Mum who is in remission from cancer that cant be cured either.This week he was taken quite unwell i only discovered when i popped in to tell him about local natural burial site(he doesnt want a headstone)Dad was running a high temp feeling lousy so i collected his antibiotics mum said he was sleeping alot and not eating.I rang his hospice nurse who reassurred me he wasnt dying but just had another infection.They said perhaps he was reffered too soon then mum told me he could go anytime so it does mess with our heads.I am thinking of not working this sun if he is still ill as my colleagues are far from sympathetic tbh and i dont want to make work a priority as i have since the dcs were small.
My heart goes out to you and your family and hope you have support in this difficult stressful time x

BeautifulBatman Fri 03-Jul-15 12:51:21

I don't know how people cope. My uncle has been told, after chemo/radio/trials/anything he could sign up for that nothing is working anymore on his stage 4 brain tumour and if he sees Xmas he'll be lucky. He's 51. Macmillan are fantastic. But I'm not sure anything can prepare you or make facing your own mortality any less horrific than it actually is.

queenofthepirates Fri 03-Jul-15 12:58:46

I was in your shoes in February-Dad was told he had about 10 days to live and then died a week later. He managed his funeral within an inch of its life which was of great relief to us. The rest of the time was spent saying his goodbyes to loved ones, summoning them down and holding audience (which he loved).

The GP and Macmillan were wonderful, holding our hands and his from administering pain relief to something as daft and showing me a few tricks to stop crying so I could be with Dad without breaking down (tapping your forehead FWIW).

It's f*cking shit this period but be gentle on yourself - it's a relief when the end comes and you can grieve 'properly' in whatever form that takes.

MsGee Fri 03-Jul-15 13:07:59

I just wanted to say that I am so sorry that you and your DF are dealing with this situation.

My FIL died last year after a very short time with leukemia. He was initially very focused on getting things 'done', with long lists for MIL to action. He saw a counsellor whilst undergoing chemo after initially not wanting to, which helped a bit. I think that this helped a lot when two weeks after being told he was in remission, he was told that the cancer had returned and nothing more could be done (he died within a week).

I think that he managed to get his head round it by saying that no one can live forever, that he had done so much in life and that he really couldn't face more chemo or pain.

I would just say to ask for and take all the support you can all get in the coming months. Counselling for your DF might help when he is ready for it.

BagsyThisName Sat 04-Jul-15 09:22:05

I'm sorry about your DF.

I'm sure people react in different ways. The media loves to portray the stoic, upbeat terminally ill. My DF was just so, so sad. Heartbroken to be leaving my DM and his unborn dgc.

He wasn't religious in the slightest (his favourite joke was "I had a divine revelation there is no god" but talking to a friend who is a minister was helpful. And some of his friends were particularly helpful to him (we discouraged the unhelpful ones). There was also a helpful local charity that supports people with cancer AND their families and my DM had some counselling there, they also continued to support her after.

From being very aware he suddenly went downhill, and the final 2 weeks he wasn't really aware of anything (possibly the medication).

Hospice at home was awful for us, although it was new service and my mum gave them a lot of feedback! My DM had to make decisions about his care that traumatised her (to be fair she is easily traumatised), my dbro who was only 20 had to drive off on emergency drug runs, we had one useless nurse and my mum ended up getting some from an agency (who were amazing by the way). Lots of good things about all being at home together but do consider the hospice too (it was full in our case so we had no choice).

Best wishes to you and your family OP flowers

WhenMarnieWasThere Sat 04-Jul-15 22:00:55

Oh it is shit!

We think counseling would be good for his state of mind. There's an 8 week wait through Clatterbridge. Macmillan could possible move that forward, but if he's still in hospital then he won't be able to attend the Macmillan one even if it gets brought forward. The palliative care people within the hospital have come to see him a few times though.

He apparently has several breaks in his pelvis and will have further radiotherapy to target those areas. He was able to talk about it today without crying, which was progress.

We are waiting for him to see the physio people and the o/t people. I'm not sure yet when they are thinking of releasing him. I hope that they think he can go home soon with the appropriate support mechanisms in place. Now he's not suffering from the infection etc he's feeling much better. So he's more frustrated about being stuck in hospital.

brickinit Sat 04-Jul-15 22:20:17

Radiotherapy can be a double edged sword.

It can help delay the cancer, which is good, but the patient can feel really sick for a while after undergoing it.
But it's worth it - Ican buy extra time.

I'm sure your father will feel in much better spirits once he gets out of the hospital.

brickinit Sat 04-Jul-15 22:20:41

It can

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