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Dad given two months to live.

19 Jan 2019 01:58

Hi there, 

Im totally new here, I am just so upset right now and wondered if anyone had any advice. 

My dad got diagnosed with stage 4 lung cancer last week. It was a shock. He only went to hospital with a chest infection. He came home on Saturday, they were giving the antibiotics a chance to work and had booked him in for a biopsy on the 30th but this morning he rumg me and told me he didn't feel well and said he thought he may have to go back to hospital as he'd been coughing up blood for two hours. I got to my parents in ten minutes, planned on putting him in my car and driving him to A and E but he was in absolute agony. It was horrific. So I called an ambulance. Later on it turned out its spread to his liver and nymph things

and the consultant told dad he only had a couple of months left in him. Mums been crying all day my dad has just gone into a state of shock. I'm trying to blank it out for now because I have to be strong. 

So then they moved dad to a ward for the night. Mum was told she would be able to stay with him over night but when we got to the ward the nurse was pretty harsh and direct with my mum and told her she couldn't stay with him. She said she'd had three other people ask and the answer was no. I couldn't believe it. Her tone, her manner, it was absolutely awful. My poor mother. The nurse then said if she wanted to stay that much she could sit in the day room but only for one night until my dad "gets used to it". They asked me to leave as it was 11pm by the time he went to the ward and away from my mum before I left I explained (through tears) to the nurse that my dad had just been given two months to live and that my parents were terrified and gutted and dad didn't want mum to leave him. I also explained that mum has really bad anxiety and is very sensitive so can't deal with stress as well as most but I was so hurt and upset for my mum. It was a huge blow after the worst week of her life and she was crushed. I've left her now stuck in the day room all night and I just can't believe this is how it is. If mum can't be with dad he will give up straight away. He needs her. Especially tonight. I thought it was so cruel to not let them stay together and to speak to mum like that or am I being over sensitive and this is what it's like if you're terminally ill in hospital? Thanks so much. Sorry for going on. Xxxxxxx

Dad given two months to live.

19 Jan 2019 09:00 in response to MiGi

Gosh...this is heartbreaking. I’m sure there are procedures to adhere to and good reasons for it.....but......surely there can be some flexibility. If not - then I think there should be!! It should be worked out so people can have their loved ones with them. 

And even if that really isn’t possible, the nurse could have at least adopted a caring, understanding and compassionate tone. There’s just no need. I’d be tempted to give her senior some feedback about this (i.e I understand that there are procedures but that nurse could’ve handled this better!)

This is a shame because most I’ve met are beautiful souls (for example, I come from a family of lovely nurses and the cancer nurses on this site are always very nice, patient and caring.....but I do remember one bad apple who saw my Mum’s religious book and then shot my Mum a long look of disgust.....when I went after her and said, “hey....what the hell was all that about? is there a problem here?” she was taken aback and all smiles in front of everyone saying, “I don’t know what you mean! Of course not!” But...we all saw it). 

I’m not sure if there is a way around this, MiGi...perhaps one of the other members can help (as your lovely Dad has stage 4....could another facility be better for him so that he can have his loved ones around him?)

This is the last thing you need, MiGi. Like your Dad, my Mum had stage 4 lung cancer and I know how incredibly hard it is....especially in the early days after diagnosis. I know exactly what you’re going through xx 

How are things today? xxx

 

Dad given two months to live.

19 Jan 2019 10:40 in response to MiGi

Please make a formal complaint. 

Nurse Ratchet has no place in the NHS.

This nurse's behaviour is unacceptable and in breach of the NMC code of conduct . The first line of the Code states that nurses must  "Treat people as individuals and uphold their dignity To achieve this, you must treat people with kindness, respect and compassion."  

https://www.nmc.org.uk/globalassets/sitedocuments/nmc-publications/nmc-c...

 

Best wishes
Dave

Dad given two months to live.

19 Jan 2019 14:10 in response to davek

Hi, 

Thank you so much for replying guys. 

After I spoke with the nurse to explain before I left my parents mum said she was so lovely to them both and couldn't do enough to help even asking my mum if she wanted to stay longer etc... Mum had a complete and utter breakdown in the night. Called me at 2.30 am in a state I never want to see again but know I will again tonight. I feel like I watched my mums heart break right in front of me. 

At the hospital today we had the same thing with dads nurse (a different one). She told me to leave as it wasn't visiting time and said only one person could sit with him so mum and I were taking it in turns to wait in the day room whilst one of us sat with him. When I went to leave I realised I'd left my jumper on his bed so popped back to get it and she told me again to leave. Dad got really upset and it messed up his breathing and he started coughing again, he swore under his breath at her he was so so upset. I decided I had to say something so I asked if I could talk about it with the nurse in charge. She was absolutely amazing. I cannot believe how one conversation with her has changed everything. She really listened to me when I explained about the shock diagnosis last week and the two months to live thing yesterday. I told her my parents need each other and being an only child they need me. I told her that the situation as it was was really upsetting my parents (and myself) and about mums anxiety. She gave me the biggest hug ever and made mum and I a cup of tea. She came and met my dad and had a lovely conversation with him. She's told the other nurse and now my parents can stay together (and I'm allowed to be there too) as long as we keep the curtains closed and stay in our little space. We are so happy about this!! I have been with my mum and dad all morning and have just popped home so dad can try to sleep for an hour. We have been sat together talking and I've made dad laugh so much. I am so grateful for your replies. I thought it was me being over sensitive and I just didn't know what to do. It's sorted out for us now but it hurt so much. It really really hurt and I hope if anyone else has this happen they will please try and talk to a ward manager or a nurse in charge because if I hadn't I wouldn't have had precious time with my dad today and I'm crying but it was just so lovely. 

Thank you so much guys for replying and I'm sorry again for going on. I cannot believe this has happened and my dad is so ill. It was only two weeks ago my parents were running about with my twin girls. It's happened so quickly. 

Thank you, I hope you guys are ok. Lots and lots of love. Xxxxxxxxxxxxxxxxxxxxxx

Dad given two months to live.

19 Jan 2019 19:07 in response to MiGi

Hi, My heart goes out to you and i do know how you feel as i'm going through it with my Mum..I'm so glad you found an understanding nurse to sort things ..Nobody should face this sort of problem when someone is so ill...My thoughts are with you x

Dad given two months to live.

19 Jan 2019 20:05 in response to Orchid71

Hi there, 

I'm so very sorry that you're going through it too. Thanks so much for your reply. I am so empty. I hope you're managing to cope ok, this is the most horrible nasty thing and Im really pushing myself to stay strong because this is hard. I can't think of any positives in this so far. Xxxxx

Dad given two months to live.

20 Jan 2019 10:17 in response to MiGi

Hi MiGi,

I am so glad that you managed to sort this out but so sorry that you had to fight to get the type of compassionate care that should have received automatically. 

 

Best wishes

Dave 

Dad given two months to live.

21 Jan 2019 12:30 in response to davek

Hi Dave, 

Thank you so much for your replies. The only reason I didn't want to make a formal complaint is because I didn't want to make things worse for my dad so I just tried to smooth it over a bit etc... 

I just don't feel like things are going that well in some ways. They're treating him better now and I actually had another patients wife come and thank me yesterday because she too had been thrown off the ward for eating a sandwich and aparently after I'd raised my concerns, she was treated much better by the nurse too. 

The issue now is that dads been in since last week and is doing ok. But the doctor came to see him on Friday and when dad said he felt really down and frustrated that he was stuck to his bed the whole time because he is on oxygen the doctor said there was no reason why he couldn't take his oxygen with him if we got him a wheel chair and we could take him for a wander down to the day room or to the coffee shop even. My dad was so happy but then the nurse said no. She said he can't have his oxygen unsupervised there needs to be a qualified nurse with him at all times and nobody has enough time to take him places so he has to stay put. 

The thing is the doctors and the cancer nurse have stressed how important it is that dad stays positive and carries on doing things and sees the people he wants to see etc to cheer him up etc.... But it's been 5 days now and he's not allowed to leave his bed. He says he feels great on the pain killers and oxygen but he can't cope with sitting in his bed 24 hours a day not forgetting two weeks ago he was running about so keeping still is doing nothing for his morale or mental health. Hes missing his little granddaughters so much and they're missing him, but I can't take them onto the ward as they have a few patients with flu at the moment hence the importance of us getting dad down to the day room or the coffee shop so that he can see us all. He's asked me to order him his own oxygen bottles from the internet but I'm confused as to which ones he needs and I don't want to give him ones that aren't safe but he's gotten to the point now where he's said he'll come down without his oxygen if it means he can see us all but that's not safe either. If he has to stay in his bed permanently like this I don't know how they expect him to stay positive and it's hard for us because we don't know what to do. I keep thinking I'm being over sensitive because he's my dad that's why I'm posting on here. It really helps. Thank you so much. 

Tracy. 

Dad given two months to live.

21 Jan 2019 14:12 in response to MiGi

Hi Tracy,

So sorry to hear that you are getting the run-around, the doctor and nurse obviously aren't communicating properly. 

You might want to ask the ward manager or the doctor how you are supposed to carry out the doctor's sensible suggestion if the nurse says this isn't possible. The nurse may well be right, but it is possible that she is just making excuses. Your Dad shouldn't suffer because these two aren't communicating properly.

I wouldn't order any oxygen bottles until you've spoken to his care team. Oxygen is pretty dangerous stuff to handle and it would be a tragedy if your house was to blow up on top of all your other problems! 

Good luck with sorting this out

Dave

Dad given two months to live.

22 Jan 2019 00:47 in response to davek

Hi! 

Great advice THANK YOU. My daughter has been pushing him around the hospital half the day in his wheel chair along with his oxygen!!!! He was so happy to escape his bed for a while. It was so good to see him smiling. AND he's having oxygen installed at home now, the doctor is sorting it out first thing in the morning and thinks he may be able to fast track it because dad can come home when it's done.

It is so mad how all of this works. He needs a biopsy but it's a special type, there's only one doctor who can do it. She's on holiday until the 30th so he'll be having it then. 

She is a lovely doctor and I'm not complaining, we all need a holiday, especially NHS staff BUT I found it really scary that just because one person is on holiday dad has had to wait what will be three weeks for this "urgent" procedure. I know it's no ones fault etc... I just didn't think it would be like this. I need to get used to the way it all is. 

The doctor asked dad earlier if he had a massive bleed out did he want to be resucitated. He said it involved breaking his ribs and putting tubes in. My dad basically stopped breathing there and then and mum is back on diazepam. Dad phoned his brother freaking out saying OMG I am going to bleed to death so he had a meltdown aswell. The doctor turned round and said "Oh no! I didn't mean it like that!" I asked mum how did he mean it and she doesn't know. I said I think we need to ask the doctor exactly what he meant in the morning. 

This is an absolute minefield. I have managed to keep my sense of humour and so has dad but he's getting a bit agitated now I noticed. He wanted a sleeping tablet tonight but there is one doctor covering the whole hospital and so they can't authorise it so dads awake now with the guy next to him shouting and performing all night and some machine beeping constantly. I feel so sorry for him. I gave him ear plugs and a sleeping mask. God help us!!! 

Hope you are ok though Dave. 

Tracy. 

Dad given two months to live.

23 Jan 2019 23:21 in response to MiGi

Hi, My heart goes out to you and your family. After reading your other posts it's heart breaking. It was lovely to hear that your Dad got to go in the wheelchair, I just hope things improve at the hospital..Don't know how you have managed to keep your cool cause i most certainly couldn't have. Our Parents deserve respect its not alot to ask in a situation like this...                                                                             My Mum is stage 4 lung cancer and they won't allow chemo but she didn't want it anyway and i respect that. I just feel like i'm on a roller coaster and can't get off but taking each day at a time. I have 1 Brother and 3 Sisters, I'm the youngest but deal with all apointments and phone calls as i seem to get the answers and understand alot after my Friend passed with the same thing.I don't stop till i get what i feel my Mum deserves ... Don't stop asking questions and if you feel you aren't getting the answers ask again and again, You are doing your Dad proud being strong and i hope he gets home soon ...

Dad given two months to live.

23 Jan 2019 23:56 in response to MiGi
Hi ..i too am going through this illness with my mother in law but she has refused the biopsy as she can not and does not want any treatment.. So sorry you have had such a hard time on the ward my heart goes out to you and your mam and dadxx Can you ask for the cancer specialist nurses to come and see you and mam and dad. You could sort out a care plan on what suits your dads needs and maybe go home and have nurses visit . You take care sending my thoughts to you all xx

Dad given two months to live.

24 Jan 2019 10:45 in response to Orchid71

Hey! 

I feel for you, this turns everything upside down and it's really difficult to navigate your way through it all while trying to do the best for your loved one. I've never experienced this before, I've never had anyone close to me have cancer so it's completely new. 

My dad is home now. I stayed at the hospital all day Tuesday chasing up the oxygen. I think it finally arrived at my parents house at 5 or 6 pm. We had a quick demo and safety talk then I went and got dad with the portable oxygen and brought him home. I went to see him yesterday, he seems ok. He's actually looking really good now (apart from the weightloss, he was never this skinny) and mum did say it's like he's not ill again now, so weird. 

I think we all just have to stay as positive as we can (even though that is so hard because of the obvious) stay nice and calm and as rested as possible and although we have to care for someone else I think we have to make extra effort to look after ourselves. I'm finding that deep breathing is really helping me. I'm eating really healthily and I'm pampering myself a bit too (bubble bath, face mask, anything like that where we can have a little bit of time to breathe and relax). Even a five or ten minute power nap I find helps me, but yes, it's a really bad situation and heartbreaking. 

Lots of love and hugs everyone. Xxxxxxx

 

Dad given two months to live.

24 Jan 2019 15:18 in response to MiGi

I am so very sorry for your family. I am also angry, unfortunately my husband also went through an awful time in hospital. Some of the nurses were just downright rude. I am still so angry about his awful treatment there. He discharged himself and came home he died two days later. There was a feeble attempt made to get him registered with a hospice, they called with an appointment after he had died. So please stand up for your Dads rights, Some people shoud never work in hospitals. I thank God every day my husband was  at home with me when he died.

Dad given two months to live.

24 Jan 2019 20:43 in response to Brien

Hey, 

I'm so sorry they were so awful to

your husband. I'm not surprised you're angry. I was really upset and that turned to anger when I saw my parents upset by it. For the life of me I cannot understand how they could be like that. It's such a sad and difficult time, for your husband to feel like he had to discharge himself like that is just awful. I don't think dad was on an actual cancer ward, there was a real mix of people and things going on so I'm not sure if they were lacking the training to be able to deal with terminally unwell patients and their families or what was going on but alot of it was just rudeness. My dads home now, I'm not sure how all this works but I'm guessing he will be back and forth to hospital for chemo and if he takes a turn for the worst. But hopefully we can avoid the hospital as much as possible. Although there are some amazing nurses there too. 

Aaaaww best wishes and lots of hugs. Xxxxx