Nina's Dad

[Justamo]

started for Nina to post her news . . . and copied over from my thread. Hope everybody is happy with that !

Edited December 16, 2016 by Justamo

[Justamo]

(Posted by Nina this morning)

Hi firstly I'd like to say hi to every one - I'm Nina.

We had the devastating news on Wednesday that my dad has pancreatic cancer which has spread to the liver, lungs and lining of the stomach. As you can imagine our lives have been turned up side down.

They have said they can only try chemo to prolong life at a mild dose. Next week, he's going for a biopsy. They might have said what it was to determine, but I didn't hear the answer.

Right - a bit about my dad. His names Bill, he is 70. He's worked all his life. Very very fit and healthy man. In 1997 he had a heart attack had a bypass. Got over that and again led a very fit and healthy life until 8 weeks ago when he became ill. He's had his own garden allotment for 40+ years and always had dogs so always walked for miles with them. He had 3 kids altogether my self and 2 brothers, and 3 grandsons. We're all coping in different ways. I have to and need to be strong for my 2 sons (name removed - moderator) - he is 26 and (name removed - moderator) - he is 14.

I realise whats happening and know whats going to happen, so I'm being the hard person. This is my coping strategy. This I think I learnt from working in care homes for 20+ years when i was younger. My mums not coping well, not eating, not looking after her self. She's still in shock I think. I'm looking forward to getting to know you all.

Take care

Nina xxxx

[Justamo]

Hi Nina, welcome to Planet PC. None of us want to be here, but we're all grateful for our 'safe' place.

I'm so sorry to hear about your dad. I can understand your coping strategy and youe concern for your mum. She really needs some support, and I wonder if you've spoken to the MacMillan nurses ? Or is there a hospice in your area ? There's all sorts of help available for families, and when Marmalade posts on this thread (which I just know she will) I'm sure she will mention the different kinds of help that she and her Louis received. Have a look for her thread under Family, friends and carers. It's called 'Our journey without chemo'. Veema has very recent experience too, and she'll have plenty of advice for you. Lots of people know exactly how you are feeling.

I don't think you're a 'hard one' at all. I think you are a very caring and loving person trying to look after the whole family including your boys, but you need support yourself, too, so I'm glad you've found this forum. You'll get all sorts of help here.

Speak again soon,

Love, Mo

[yanina]

thanks for this as i couldnt find my post and didnt know hoow to do this xxx. dad as come home tonight. im happy hes home .. but im also scared ...feel as if its all become so real/final and now we just been left to get on with it.. i know its not as we will have the support of mcmillan ect. dad looks so well its unreal.. and hes pretty up beat. mums been lauhing today wich im glad about. we broke the news to his brother yesterday .. hes coming to see him on tuesday. mums as a concern and doesnt know how to address it to dad. she needs to know if hes as life insurance, but shes scared to ask .. i think shes begining to realise whats happening.they aint any any benifits so wont get any help. but were sorting that out monday. so hopefully they will. im not crying as much now .. ive come to realised whats been told and whats going to happen. big hugs to ech and every one of you xxxx

[Justamo]

Hello Nina.

I'm really not sure about the life insurance thing. I know that Marmalade and her husband had a discussion shortly after he was diagnosed, where they sorted out all sorts of details, and after that they didn't talk about the cancer at all.

If your mum feels that she can't ask him about it, I wonder if his brother would speak to him ? Perhaps another forum member will come up with an idea. Macmillan might be able to advise on benefits too, even if you think you aren't due anything. Your Dad's mood might go up and down a bit while he is still coming to terms with this awful diagnosis but it's good to hear that he's upbeat today, and nice to know that your Mum has been laughing.

Stay strong Nina, we are all with you.

Love

Mo

[Veema]

copied over from Mo's thread

Hi Nina...you might want to start your own thread then things don't get confused with your story and Mo's...

Sorry to hear about your Dad...he's got it exactly where my husband had it just before he died. I hope they can try treatment if that's what he wants. Watch out for fluid build up in his abdomen as we were told it was the liver mets and the spread to the lining of the abdomen which caused this in my husband and it was very uncomfortable.

Whatever your Dad decides, we'll be here for you all the way, but don't think he's giving up if he decides on no treatment...it may well be more about quality of life now rather than quantity. Get the palliative care team on board if you haven't already as they will be a huge help.

Much love

Vx

And just to add following on from your last post...I think your Dad will be entitled to some benefits (think it's attendance allowance for over 65 year olds) and also a blue badge...if you've got Macmillan on board, they will be able to advise you on this.

You've just got to make whatever time he has left the best you can.

Vx

[sandraW]

Hi Nina, welcome to this place where no one wants to be but where you will get lots of help and support, I see my fellow posters have sorted out your thread for you already, it is much easier to find you when you have your own thread.

It is perfectly normal to be scared, its all so very frightening, its also okay to be aware of the outcome too, that's how I coped to be honest.

Whether or not your Dad decides on treatment is his decision, hopefully he will get good advice from his doctors, as they are the ones who really know what is going on, Marmalade's advice about palliative care is great too with this roller coaster of a disease.

You Dad will be entitled to AA as Veema said, get Macmillan to apply for you, as your dad has a life limiting illness it will be immediate and back dated to the date you applied, also the blue badge is a great help even if its not necessary now it's good to have it in reserve, Mum might also get a small carers allowance too, it all helps as there well might be extra expenses to cover with hospital visits ext.

I hope you dad gets some good news regarding his treatment, take care sandrax xx

[yanina]

afternoon. been to see dad at home this afternoon. seemed ok. hes got his opointment for his biopsy on thrusday,they told him he will be there 5 hours just hope all goes well. he way saying he feels as hes got trapped wind as he can feel his stomach rumbling, but i think he's confusing it with pain and when this happend he doesnt look good and he as to take some really deep breaths

in febuary of this year we all booked a family holiday to ibiza for may next year, obviously dad can not go. i went and spoke to travel thursday and she told me my options. if dad is well enought in febuary next year my self my husband and 2 boys will be stil going. if dads ill then we will devere and go at a later date.

my self and younger brother as said we dont ant to know how long dad as left with us. but mum as said something tonight witch as led me to belive its not long... she didnt do intensionally and i dont think she knew wat she had done. we was discussing about mum being on her own when we go away, and she said ... "I COULD COME WITH YOU AND GO FOR YOUR DAD" do you think she was saying dad wont be here com may next year?

[Guest]

Hi Nina,

Getting this news is a shock and all sorts of things come into your head, holidays, symptoms, what other people mean by what they say, money worries and so on. Everything is confused. It takes a few days for things to settle. I wouldn't read anything into what has been said.

Life expectancy can be very difficult to predict. Some on here have died unexpectedly and others have beaten the odds by a considerable margin.

You or your Mum or Dad need to ask the specialist nurse at the hospital for form DS1500 to be sent to Macmillan Finance or to you so you can send it. They will then telephone you to fill it in over the phone most likely and will submit the claim. Attendance allowance for a life limiting condition is about £82 per week and comes through quite quickly. They will also speak to you about what else might be available.

Encourage your Dad to speak to his GP about palliative care as this is not just about end of life, but carers courses, dietary advice, coping with a life limiting condition, symptom relief, respite care and lots of other stuff including conversations with your Dad about what he wants to happen to him now, and in the future. They provide trained staff who can answer questions and listen to your Dad's worries in confidence and get resources for him when he needs them.

Your dad is going to struggle to digest food as his pancreas cannot work properly and this will cause him discomfort, sometimes worse than others, a wheat bag or hot water bottle can help with that. An enzyme called Creon will help with this and is often prescribed with Ometprazole or similar drug. Speak to the nurses on here about amounts as GP's and general nurses and dieticians don't always prescribe enough.

Try and encourage your Dad to keep up exercise and eating until you get some results back as the fitter he is the more easily he will tolerate chemo and other treatments, but don't nag. Sometimes they simply can't.

The biopsy is to discover the type of cancer which will determine the treatment to some extent. The operation does not take 5 hours, it's quite quick but there are forms to fill in before hand and a blood test, and, as he will have been sedated he will need to spend a bit of time resting quietly afterwards on the recovery ward. You may get an answer there and then or you may have to wait several days, depends on the type of cancer and the hospital. Your Dad's biopsy and other test results will be reviewed by a specialist cancer centre if your hospital is not one in something called and MDT (Multi Disciplinary Team). This is to make sure that all hospitals large and small get access to specialist resources.

Only your Dad's doctors will be able to discuss treatment options because only they have all the information and his medical history. You are entitled to a second opinion if you feel you need one and the doctors will not mind if you do.

The main thing for now is to ensure that your Dad gets help for his discomfort via his GP or the hospital then he will feel stronger to deal with tests and other decisions.

Much love to you,

Marmalade xx

[yanina]

evening all. been to mum and dads for sunday lunch today. mum had said dad didnt have a good nights sleep as his sleeping tabs didnt work. dad took its out on mum thats he'd been away since 1am. mum said why didnt you call me in i would have come( they sleep in seperate rooms mum snores )dads frustration and anger is coming out more and more and mum is getting the full force of it

( we did know this would happen ) i told mums its not personal and to let it go over her head and that he does love her, and to remember that. after dinner me and my hubby took mum to asda for a break , and to do a bit of xmas shopping.

she enjoyed the break. mum spoke to district nurse when she came about dads pain, she explain its coming from the pancreas, so shes told him to get gp out to get some pain relife sorted, to phone mcmillan and to ring specialist cancer nurse up from hospital, who will also come out and see mum and dad.

im off to do mums shopping tomorrow for her. ive got hubby's family coming tomorrow and my nephews to collect christmas gifts. looking forward to it, but on the other hand im not.

[Justamo]

Hello Nina, how are things today ?

Love Mo

[yanina]

hi Mo

sorry not been about ive been so busy helping mum with dad, and doing her shopping ect.

what can i say christmas was not the same and will never be the same again. dad had no idea bless him he was asleep on and off all day.

dad hardly ate anything had his breakfast and a small amout of his christmas dinner. he didnt have any tea.

was heart breaking to see. boxing day was pretty much the same not eating much and drinking little.

dads started renching/feeling sick, but hes brining nothing up.hes been given anti sickness tablets.

things have strted to take its toll on me, i feel run down stressed and i keep having mild dizzy spells.

we have had no support from anyone since dad came out of hospital. mcmillan have not been intouch to offer support advive on benifits ect ive had to do it all.

only people we see daily are the DN who come to give dad his injections.

if im being honnest i dont think hes got long left .. in the last week and half he as gotten worse.

nina xxx

[Elaine123]

Hi Nina I am sorry to hear about your Dads diagnosis. I think Petes diagnosis was just about 2 weeks before your Dads. I know just how you feel , scared , shocked and unable to take it all in. We had the same Xmas and Boxing Day as you did. Pete just slept on and off all day and refused to eat as he plain and simply cannot seem to want to eat. As you say Xmas will never be the same again. Pete is due at the cancer care centre tomorrow for blood tests for his chemo to commence on Thursday but after the bad day he has had I don't even see him managing to go. He had pinned all his hopes on chemo and I don't see it happening. Keep in touch and keep strong

Elaine

X

[Justamo]

Poor Nina, it sounds awful. You really need some help for yourself, too.

Have you contacted Macmillan for help? Has the specialist nurse from the hospital been in touch ? I think you probably have to approach them, and with the Christmas holidays there's bound to be fewer staff available.

I expect other forum members will give you better guidance, but I think you should get in touch with the GP tomorrow and ask for antisickness medication. Continual retching must be causing additional pain and there must be appropriate medication available. I think you need to get some help first yourself too. Has Dad been referred to a palliative care team ? Is there a local hospice ? A hospice would certainly direct you to a source of help for you and your Mum.

I am really sorry sorry things are so hard for you. You sound so stressed and my heart just goes out to you. Try to stay strong, you're doing really well and keep posting on here.

Love, Mo

[Veema]

Oh Nina...it really is awful. I think you have to be referred to Macmillan...we were, but we don't have Macmillan in the community here, we have hospice nurses...our Specialist nurse at the hospital referred us, but would imagine the GP can do that too. They should then come out to see you and will be there for as much or as little as you need them, the will also liaise with everyone which takes the pressure off you a bit...check that a referral has been done.

Nige retched and belched all the time although didnt feel sick and nothing could stop it, but that was in the last few months...it was horrible for him and something that really got on my nerves, bless him...I know he couldn't help it.

You do get a feeling when it's close to the end...you just seem to know. Do you have a hospice local? Our hospice does hospice at home so you can have the care, but in your own home, might be worth checking out your local hospice if you have one.

It is really tough...and you feel like you've got to do and sort out everything, but it is really important to look after yourself too. I hope you can get Macmillan on board.

Lots of love

Vx

[yanina]

hi all xxx .. finally things are looking posative , dads having a bed delivered tomorrow and a comode as hes not safe to be going up and down stairs.

some one from pallative care have been to see mum and dad, dad spoke to her about how he was feeling but mum couldnt be there while he spoke about things (too upsetting for her )

my self and my hubby ave been today (29th dec) to sort the living room out so the bed can be put up tomorrow.

when we got there mum had been crying, but didnt know what for. she went up to see dad in bed early this morning and he was crying and he asked her to lay on the bed with him, mum thought he was going to pass that very moment. he told mum he would hold on as long as he could for her.

after a while i went to see dad as he was still in bed, asked if he was ok, i knew something was wrong, this is wen he had a total melt down, we say and cried together and he asked me to look after mum.

im promissed and assured him i would and she would never be along. this was heart breaking as my dad clung onto me like a child who was scared to let go. i said dad lifes a bast***.

things are only going to get harder and i can only hope i can stay strong.

[Veema]

Life really is crap sometimes. Nina, it's good that he's got all that done and out of his system, you may find he'll rally a bit now. Good too that the palliative care team have been out...have they offered your mum any support?

Keep posting lovely, I pop on many times during the day...it does you good to get your feelings written down, and there are lots of us who have been where you are now.

Vx

[yanina]

Hi V xxx

Trying to stay strong for me and stay strong for mum is proving hard at the moment.

I have 2 brothers but I feel everything is being put onto my shoulders! I don't work due to health issues, so I am doing more but its taking its toll on me.

I'm encouraging mum to eat every day as she's not been doing so.

I'm trying to carry on with normal day to day living, this is my way of coping, and also for the sake of my boys.

I'm taking mum shopping tomorrow and to get out the house 1st time since Xmas eve, my oldest son will be minding dad while were out.

Take care

Nina xxx

[yanina]

hi all xxx .. finally things are looking posative , dads having a bed delivered tomorrow and a comode as hes not safe to be going up and down stairs.

some one from pallative care have been to see mum and dad, dad spoke to her about how he was feeling but mum couldnt be there while he spoke about things (too upsetting for her )

my self and my hubby ave been today (29th dec) to sort the living room out so the bed can be put up tomorrow.

when we got there mum had been crying, but didnt know what for. she went up to see dad in bed early this morning and he was crying and he asked her to lay on the bed with him, mum thought he was going to pass that very moment. he told mum he would hold on as long as he could for her.

after a while i went to see dad as he was still in bed, asked if he was ok, i knew something was wrong, this is wen he had a total melt down, we say and cried together and he asked me to look after mum.

im promissed and assured him i would and she would never be along. this was heart breaking as my dad clung onto me like a child who was scared to let go. i said dad lifes a bast***.

things are only going to get harder and i can only hope i can stay strong.

[yanina]

It's been a while but been helping mum with dad. I'm there every day from 9am till 2/3pm .

District nurses have been amazing and got mum and dad the help the need. Mum now has carers going in so mum can get the well deserved rest she needs at night.

Dads become very irritable and very nasty more towards mum. I had to raise my voice to him other day and tell him not to speak to mum in that way, I know he doesn't meant it and mum does to.

Mums finding it hard to look after dad, all the lifting has taken its toll and she injured herself.

Dads stopped eating and is just living on water. We're encouraging him to eat but he's always asleep.

Today he swore blind some one one was drugging him up (his words). Mum as spoke to district nurse this evening and told her shes struggling, and mentioned about him going into the hospice.

So the doctors are coming to asses him tomorrow and see whats what. I told mum not to feel guilty as she as done her best.

Take care all speak soon xxxxx

[Dandygal76]

I am so sorry Yanina. I am afraid the aggression is common and of course he is fed up (who wouldn't be in his shoes) and we always take that out on our nearest and dearest. Then combine that with drug side effects, increased toxins and cancer in the blood etc etc and it is just pants. But please trust me that this aggression is common and it is not because your dad is cross with your mum (or you), it is just part of the course. If your dad is amenable to it, and difficult to manage at home, then perhaps a hospice is your route. People seem to really fear it but I have never heard anyone regret it. If your dad is to pass then they will help it be peaceful and calm. What you are describing is horrible on you all right now (including your dad). Be strong lovely and make the practical choice... not the emotional one (I know that is easier said than done). x

[Veema]

I really think the hospice is the best place...if I'd have thought Nige was going to die so quickly I'd have got him in our local hospice as the last 24 hours were truly awful and it was all witnessed by my daughter, who is 10, and she often now mentions it and says it stops her going to sleep. In the end he died peacefully in the hospital A&E resus area, which was nice and calm, but the hospice would have been nicer. I'm just thankful that we managed to get him to come round after he collapsed because that would have been a horrible, horrible way to die.

Obviously, it doesn't always happen like that. Marmalade's Louis died peacefully at home and if you read her thread, you'll see it can be a calm and peaceful time. You've just got to decide what's best for you, best for your mum and best for him.

loads of love and strength

Vx

[Dandygal76]

Good advice V but Marmalade did have her wonderful doctor daughter in tow and I do not remember postings on aggression. I can imagine it is very scary doing it at home. Marmalade is also not new to cancer. She also had strength I would never find in myself. I would go for hospice route, it is clear from your post you guys are not coping (especially mum).. and who would. Find the path of least resistance and peace. x

Edited January 4, 2017 by Dandygal76

[Veema]

I don't think you're not coping...its not about whether you are coping or not...I just think that you've got to think of all of you...not just your dad. I coped...in the end I managed to get him out of the bath...it just made it horrible and undignified for Nige to be naked, sat in his own crap, not breathing, with my dad, Phoebe and the paramedics there...if he hadnt come round and died there and then, which we thouht he had at one point, it would gave been awful for us.

You need to make his remaining time the best it can be for all of you...and the same goes for his death.

Vx

[yanina]

Hi,

Thanks for all your lovely and caring comments - you don't know how much they mean to myself and mum.

District nurse has been today and assessed dad again spoke to mum and my self , and spoke to dad about the hospice. Dad has said he doesn't want to go his words were "he knows he wont come out".

District nurse has been onto the hospice and explained the situation, and its a case of waiting for a bed for dad to go in.

Hes stopped eating (not eaten for 3 days) and just taking sips of water.

Myself and DN managed to give him a wash and settle him back down.

Mum is physically and mentally drained, shes not eating/sleeping and shes not left the house since Christmas eve. She says, she feels guilty for putting him in the hospice, but the DN also explained its also not just about dads well being but mums as well. I've reassured her NOT to feel guilty you have done your best for him and that in the hospice he will get the care he needs from the nurses, and then she can then be his wife again and be there for him as his wife.

I just want to say thanks for all your words of kindness support and encouragement.

Take care hugs to you all xxxx