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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 

 

 

Dad given two months to live.

25 Jan 2019 08:18 in response to thesaint

Hey,

Thanks so much. He's home now. We're in touch with the community nurses etc... After the biopsy on Wednesday (takes 10 days for the results) they'll tell us exactly what's going on and what treatments are available. If the consultant said he only had about 2 months left I'm not sure dad will be wanting to go through chemo just for an extra few months. I can understand your Mum in law not wanting treatment, it's such a personal thing, if I had cancer at my age (42) I'd want any treatment they could give me to survive mainly because I have small children but if I was much older I'd seriously think twice about it. 

It is only 16 days, I knew absolutely nothing about cancer until then and now it's all I think about. 

Take care, lots of love. Xxxxxxxx

Dad given two months to live.

25 Jan 2019 08:56 in response to MiGi

Thank you so much. Your right my husbands ward was  not a cancer ward so I suppose they just were not trained to cope. The only thing I can tell you that may help a little is when my husband was told he had terminal cancer he asked the Dr how long he had. He was told it could be months or years. Fortunately he did well on the chemo treatment and we were given almost three years. two and a half of these were good quality. Having said that if felt like someone had shot a gun and we were just waiting or the bullet to hit. It's a very stressful time for you and your Mum so take care of each other as well. 

Thinking of you

Best wishes and hope you can all have some happy months ahead,

xxxx

Dad given two months to live.

25 Jan 2019 09:26 in response to Brien

Hi Brien,

I'm so sorry to read about your awful experience with the hospital when he needed end of life care - there is simply no excuse for it. This has nothing to do with a lack of specialist training it is about basic compassionate nursing and treating people with dignity and respect. Receiving a referral to a hospice after your husband died is unforgivable and inexcusable. It also indicates to me systemic failings in a Trust's processes. In a well managed Trust the registration of a patient's death by the GP results in all patient appointment letters being sent out to avoid exactly this situation.

Please channel your anger into making a formal complaint to the Trust's Chief Executive coped to the CCG and the Care Quality Commission. Those in charge and those supposed to be inspecting hospitals need to be made aware of the grief caused by these failings and those responsible held to account and action taken to stop another family (possibly mine) being treated so shamefully. 

 

Best wishes
Dave

 

Dad given two months to live.

25 Jan 2019 09:40 in response to davek

The GP also had a problem with the hospital. He had to wait over a week to get the details of my husbands treatment from the hospital. Him and his secretary called all the time for this paperwork. All it took in the end was an e mail, unfortunately I could not register the death because I needed the certificat e from the Dr. This of course delayed everything. It really was unbelievable.

Dad given two months to live.

25 Jan 2019 10:53 in response to MiGi

So sorry to read this all so shocking and frightening contact PALS they will have one at the hospital and tell them what has happened.Wishing you peace and praying for you all

Dad given two months to live.

25 Jan 2019 12:48 in response to Betbunhugo

Thank you. Perhaps when I feel a little better I will, Its all very new to me and being without my husband still feels too raw.

Again thanks for the advice

Best wishes

Betty

Dad given two months to live.

25 Jan 2019 22:03 in response to Betbunhugo

I'm not a great fan of PALS to be honest, following family and professional experience, unlike their predecessors they aren't fully independent as they are employed by the hospital they work for. 

The CEO will refer the matter to PALS but if the complaint goes direct to him or her they can't claim at a later stage that they were unaware. 

I understand this is probably the very last thing you want to think about at this harrowing time.

 

Best wishes

Dave

Dad given two months to live.

26 Jan 2019 02:25 in response to MiGi

Dear MiGi,

my mum was diagnosed on December 2nd 2018 and passed away Friday 11 2019. 

The hardest part is the first week when you have to come to terms with what’s happened. After you’ve conquered that, it’s odd to say that you get use to it. Prepare yourself for when your father changes physically and - mentally depending on the person. 

 

I can’t advise you on what happens after as I am grieving but I can maybe help on other issues.

The hospital has no right to make you leave and we made such a fuss that we ended up getting to be with mum 24/7. You need to push for it and ask for a meeting with the head nurse and doctor. You have every right to be there !! 

We use to try and create a happy feeling in the room by bringing up good memories and times and specially funny moments. It’s not easy to put on a brave face but it does comfort the patient and in this case your father. Mum loved it and I think it brought her peace of mind specially that the news is so horrific that you have received that you need to melt it down and replace it with happiness ( I know that it sounds quite odd but you’ll see with time). 

Your father will come to terms with the news and the best thing you can do is to create a peaceful and happy environment. We use to play disney music such as the jungle book and Pocahontas as mum was a true child at heart - it cheered her up and even though she wasn’t able to communicate she’d try to smile and would calm down immediately. 

I put on a brave face and did what I had to do. You’ll have time to grieve so in the meantime while you still have your wonderful father, make the most of it and bring joy around you. Make it a happy memory so that when you think back in it you remembered the smiles and the laughter and not the dark times. 

 

I hope I haven’t chewed your ear off with my long message. I wish you strength, love and happiness. xxxx 

Dad given two months to live.

26 Jan 2019 06:56 in response to Ldn91

Hi Ldn91, 

Thank you! I'm so sorry you lost your mum. That was so quick too. You're probably still in shock. I know we are. 

If dad ends up in hospital again I'm taking no messing at all. @davek ‍ I'm going to be strong and I will stand my ground and make a formal complaint. 

It sounds like we are handling things quite similarly. Dads home at the moment and so we've been sat with him talking and laughing, even teasing him. Every time I leave him I say to him "stay alive dad" and he says "I'll try lovely girl". It's become our little joke I suppose. If joke is the right word because it's so real. He idolises his grandchildren so he's had them there playing and although he can't play with them now he'll tuck one of my twins either side of him and they'll watch tv and chat. It is all so sudden. I can't even remember when he was diagnosed now, I think it will be three weeks next Wednesday. He was ok before that.

He had an awful turn last night. He was slurring and hunched over just not himself at all. I think he waited until he saw me before letting go and letting out his suffering. He was having a huge panic attack but he's never had one before so of course he thought he was actually dying.   The ambulance team took over half an hour to arrive (not their fault at all but half an hour is a very long time in a situation like that especially as we thought was dying too to be honest). When they did arrive they really showed up they were incredible. We had an ambulance, a rapid response car and a car full of the air ambulance doctors. I've never seen anything like it. 

However the follow up care is really strange and I'm still navigating it for him and mum. They made him an appointment at the out of hours doctors for 9.30 last night for anxiety meds. Just after they left he came over in absolute agony. I have never seen my dad cry before but he was crying and saying "help me" you can imagine the rest and he told me he was scared and embarrassed and he said he has never in his life had pain like it. I took him to the doctors and they were fab. Upped his morphine and gave him anxiety meds. 

None of the guys who helped us last night were impressed that dads palliative care team aren't coming until next Thursday and the doctor wasn't impressed that my dad was expected to go to an appointment. He said it has to be a home visit unless my dad specifically says he's well enough to attend. I just feel like we are at the mercy of people who don't care that much sometimes and who seem to put dad on the back burner. Even with this biopsy on Wednesday. If they'd have done it sooner and started his treatment he would have had a chance. Now it's with a heavy heart that I say after last night I don't think my dad is going to live very long at all, I really don't. He fell asleep with his head in mums lap last night, this isn't my dad.

I do agree with @davek ‍ and I think if things go wrong we all have a duty in a way to complain because a lot of it is down to there being no compassion and by complaining we bring attention to the issue and it could stop someone else going through it. 

On TV you hear so much positivity about cancer, cures for this and that, funding all over the plane, charity events etc....but I can honestly say in real life there have been no positives with it. I probably shouldn't say that but it's true. It's the worst thing I've ever seen. 

Everyone here is in my thoughts and I'm so sorry to everyone who's feeling pain from it all. 

Tracy. Xxxxxxxx

Dad given two months to live.

26 Jan 2019 07:23 in response to davek

Hi Dave, 

you are so right. I read your message to Brien and yes. There are huge failings already in dads care and I'm so glad I posted here. ( I'm pretty quiet normally, I don't do social media or get involved with anything that is confrontational) but I agree that by making valid complaints and raising awareness it could save other people from this awful nightmare. As soon as I have dealt with dad I'll do it I just don't have the energy right now and to be truthful I'm scared that if I start making complaints now while he's alive they will all know and be resentful towards us and think of us as trouble makers and when they do come into contact with dad they might be worse to him. It doesn't help that I think my parents are autistic. My mum has mental health issues with anxiety and agoraphobia but I've done a lot of research lately and I am 100% sure they are both somehow autistic. They don't know. My mum says she's weird but doesn't know what's wrong with her and her "weirdness" is magnified under this amount of stress. I only worked it out recently and I'm so glad I did. I've always had a difficult relationship with them because we don't understand each other and I could never work out how they couldn't under stand simple things that were explained to them repeatedly (they aren't stupid, they're both pretty intelligent especially my dad). Now I understand what's wrong with them it's made things good and I've let go of the massive resentment I had for them because they just don't understand. My mums "weirdness" is difficult, I try to explain she has mental health problems when she's talking to the doctors etc... Because she doesn't get it a lot of the time. Like last night I wouldn't let her on the ambulance because she said things like well if it's just a panic attack bring him back into the house now please. It sounded rude and she was hindering things and just not grasping it and that's what she's like and she would be mortified to think she had gotten people's backs up or even irritated them, but there's not even anyone to explain that only me!! And I'm not a mental health care expert. It's just hard. Nothing follows, it's all completely disjointed. Even down to the fact that the number the ward gave her if she was concerned about dad at all can only be used 9-5, and this started at 5.30 on a Friday. I'm so sorry for waffling but basically what I meant was I'm going to make a complaint. 

Xxxxx

Dad given two months to live.

26 Jan 2019 07:33 in response to MiGi

I meant to say as well that the air ambulance doctor last night said dad had to see his own doctor on Monday and mentioned he may need a syringe driver and a "just in case" box. I've only just started googling this so not sure about it yet. 

Xxxxx

Dad given two months to live.

26 Jan 2019 08:06 in response to MiGi

Something strange happened last night too. Dad was sat on the chair in absolute agony, extremely distressed and he said "I can't stay. I've got to go home". Mum said "you are home." I don't know if he was delusional because of the pain but it was strange. Xxxxx

Dad given two months to live.

26 Jan 2019 11:40 in response to MiGi

Understood. Give yourself time.

My son is severely autistic - his generation was the first to be routinely diagnosed. Knowing that  older family members may be on the spectrum does help you understand them better, especially all those past occasions where they were utterly lacking in empathy! 

 

 

 

Dad given two months to live.

26 Jan 2019 11:41 in response to MiGi

Is he on morphine? My wife was away with the fairies whilst on Oromorph and hallucinated quite a bit. 

Dad given two months to live.

26 Jan 2019 11:50 in response to MiGi

Hi Tracy,

People often describe it as a rollercoaster ride of emotions. Sadly for some people it can feel like there is no upside, especially when diagnosis is late and the prognosis is poor.

Your message reminds me strongly of why we campaign to try to improve things and why I get so cross when government ministers and cancer experts at conferences seem so smug and complacent about the current state of affairs.

 

Best wishes

Dave

 

 

Dad given two months to live.

26 Jan 2019 12:34 in response to davek

Hi Dave, 

I'd heard of autism because of the fuss re the MMR vaccine twenty years ago with my eldest two and I always thought of it as a childhood thing which is so silly of me because obviously children grow into adults. The penny dropped very recently and makes sense now. Like yesterday, my daughter and I walked in and immediately knew dad really was not well at all but mum seemed oblivious and sort of almost ignored the fact that he was hunched over obviously suffering. She adores him, there's no way she would want him to suffer but she didn't pick up on it and it was blatant. I took my girls home and when I came back she had called an ambulance but he had told her to. But when dad WANTS an ambulance it means he NEEDED one at least an hour before if you see what I mean. 

Yes he's on Oromorph-10 Mls every hour and 30 mg of Morphine every 12 hours (they increased the morphine last night). I thought he was handling the pain killers quite well but he was slurring a lot the last two days. We thought he'd overdosed on the oromorph but in fact he had taken a bit less. He can have it every hour if he needs it and hadn't felt like he needed it but then look what happened! I think he was away with the faries at certain points last night but generally seems ok on that front. 

I've got to be honest I am absolutely shocked with the state of things with this. Its like I said, I feel like there are no positives. I know nothing about the politics re cancer treatments etc... But if the government thinks this is ok it's really not. Maybe they mostly have private health care so don't understand what it's really like. It seems like they're out of touch with normal people with lots of things. 

Xxxxxxx

Dad given two months to live.

26 Jan 2019 13:32 in response to MiGi

I have to agree with you, the government are totally out of touch with the healt service, it's terrible. I have so many horror stories over the last six months regarding hospital care if I still had not kept documentation people would not believe me. At one point my poor husband had a tube inserted into his lungs instead of his stomach, despite him begging the nurse to take him downstairs to the A & E so someone who knew what they were doing could do it. It was discovered next morning by the encologist. I did complain To PALS and  the hospital even informed the police there was a police report about this. In the end despite there being a former chaplain as witness nothing was done it was the nurses word against my husbands. So thats another reason I did not want to complain about his awful treatment , its so horrendous and disheartening. Sorry for going on but that was the one and only time in my life I had ever made a complaint. All you can do is look after yourself and your family the best way you can. Thinking of you. 

Betty

Dad given two months to live.

29 Jan 2019 04:42 in response to Brien

@Brien ‍ 

Hi, 

Thank you so much. It breaks my heart reading that. I just feel for you. Three weeks ago tomorrow we started this "journey" as they say. Already it's a mess. I feel so bad posting here in a way because I'm a really positive happy person, we do a lot of mindfulness etc at home, we're happy go lucky and always counting our blessings etc but I can't find any positives in this. This is an absolute nightmare and my poor dad. It's like we are having a harsh dose of the reality that's on the news all the time about the failings of the NHS. My dads going to die soon I know he is and I am just so gutted. I've cried so much my eyes are swollen. My mums just not getting a grip on it all, I can't go back to work because suddenly I'm taking care of them both, but I have to go back to work only I really really can't. She's already messed up his medication twice. I had to step in again and make her tell the doctor she'd made a mistake otherwise dad would have been on 100 mg of morphine a day and he's already off his head because of her mistake which meant they already doubled it and he didn't need it, she almost had them treble it. I just don't know what to do. They had a falling out all day because mum booked a home visit but dad didn't want her to. All day they were bickering and dad was really upset. I turned up at 1, I asked him what he wanted and he told me he was fed up, he'd seen enough doctors he didn't want to see one today. I asked him if he wanted me to cancel the visit and he said yes. So I did. He said to me "Thank you for rescuing me." He was happy then, but all day stressed out over it, he didnt trust her to not let them send him back to hospital for some reason and I don't blame him. If his meds had been tripled he would have been back in because he'd have collapsed on all that morphine. It's not her fault though, she worships the ground he walks on she just seems to create these problems all the time so I have to over see it all. He's asked me to take him for his biopsy tomorrow so we're off to do that, mum will come too but I know he feels better when I'm there. I've said mum has mental health struggles, but no one has offered her any support with dad over this. She's been misdiagnosed because like I've said before she's autistic, they both are. But the NHS is just as bad when it comes to mental health. That's another minefield where nobody knows anything and they just throw buckets of medication at you and leave you to it. I am being so negative! I'm going to try to go back to sleep. I'm constantly waiting for my phone to ring, I know my parents will be awake now because they're hardly sleeping. Dads scared to sleep in case he doesn't wake up. He'll fall asleep on the sofa he won't even go to bed now so mum is catching a little bit of sleep on the other sofa. They're permanently dressed just in case, it's just so so sad. 

I'm sorry I'm venting and not saying anything helpful to anyone. Maybe it's just a phase you go through with it all. 

. Love to everyone. Xxxxxx

Dad given two months to live.

29 Jan 2019 09:13 in response to MiGi

Just wanted to let you know I am thinking of you. You will be Ok, you are doing all you can and thats all any of us can do.  I now feel guilty now and then thinking I should have done this or that, but I know deep down that we are human beings jusst doing our best for the people we love. 

Betty

Dad given two months to live.

30 Jan 2019 08:10 in response to Brien

Hi Betty, 

You shouldn't feel guilty. My mum is like that already with my dad. We've had trouble right from the start of his diagnosis, everything from nasty nurses etc.. She blames herself every time she can't get him what we think he needs and it's not her fault, the system is just impossible. I know she'll have the guilt thing when he goes but honestly we just like you are doing our absolute best that we can given the huge obstacles. Dad is hunched over now. His neck is stuck forward like his chin is in his chest. He's in so much pain but it's biopsy day today so we are hoping someone will be able to do something. It's almost as if he needs to be stretched out, I was teasing him yesterday that if he didn't lay on the floor and do a bit of stretching I'd peg him on the line for twenty minutes to shake him out! I don't even know if this biopsy is worth it. He doesn't look to me as if he can cope with one day of chemo let alone the full course. He's deteriorated so much. I'm so annoyed they made him wait three weeks, not forgetting it's ten days until the results come. It's too long. But hey. I'll let you know how we get on, I'm picking him up at 12 for the appointment at 1 so fingers crossed. It's breaking my heart seeing him like this, he was always so strong, but he's so skinny and his bones are showing on his face. This disease is cruel. I never in a million years could have imagined this, I feel so sorry for everyone who ever has had anything to do with it. I really do and I think we all just cope and do the best we can. Like you said it's all we can do but it's so sad and so frustrating. 

Take care Betty. Have a lovely day, keep warm! It's so cold out there!!! Xxxxxxx

Dad given two months to live.

30 Jan 2019 09:34 in response to MiGi

Not sure if you know but your Dad is entitled to an allowance each week its only 85 pounds but its not means tested or anything. He is also entitled to a disabled sticker which you can use driving him to hospital appointments or anywhere for that matter.  It is a long time for you to wait for an appointment especially cancer. Just the waiting itself is stressfull. At the very least they should be giving your Dad some painkillers that actually work. I'm so sorry for what you are going through.

Take Care

Betty x

Dad given two months to live.

30 Jan 2019 10:28 in response to Brien

Hi Betty, 

He's got pain killers but still in so much pain. The community nurse is coming tomorrow with a doctor so hopefully will sort that out then if not today at the hospital. 

Mum and dad gave up work a couple of years ago. Mum had a breakdown then dad had to stay home to look out for her. They get basic benefits but it's not a lot, I know they struggle a bit. They don't like making a fuss and I don't think they know what they're entitled to. I do say but they're autistic so they panic too much about everything and me saying doesn't help. What is the £85? Do you know how to apply for it? I know when I popped into the Macmillan advice centre at the hospital they gave me a form to give mum to apply for a grant of £400. The doctor filled it out for her but she hasn't heard anything yet and I'm pretty sure that's a one off. My parents just freeze when it comes to forms and phone calls so I'm going to have to do it for them. In ten days we will have a definite answer to some of our questions and will know what if any treatment is available for him. But it's definitely bad and definitely terminal so he should qualify for some of these things for sure. Thanks so much for letting me know about those things Betty, have a good day. 

Xxxxxxxxxx

Dad given two months to live.

30 Jan 2019 10:39 in response to MiGi

The 85 pound is paid weekly and is not means tested. It is given to anyone diagnosed with terminal cancer. They do not backdate this so apply ASAP. Call the MacMillan nurses sent me the form, it was very difficult to fill in, so they did help.I gather most people need help with it.  Hope your day is not too bad. Betty xxx

Dad given two months to live.

31 Jan 2019 23:12 in response to Brien

Hi, 

I can't believe it. The palliative care doctor and nurse came out to see my dad today for the first time. They were lovely and we discussed many things including dads anxiety and sleeping problems. The doctor said he could have two lots of meds which would help him a great deal. She said that GPs don't really like to do it as a long term thing but for 4 or 5 days to try to calm dad down and get him sleeping again it would be perfect. She said she would speak with dads GP and have the prescription ready today. So mum called the surgery this evening as she was told to do to find out if it was ready to collect only to be told that the GP has refused to do it. How can that be allowed to happen? It makes absolutely no sense to me and I am gutted. We waited three weeks for the palliative team to come out and now dad can't even have what they said he needed. I honestly honestly cannot get to grips with this whole situation. I feel like I should be jumping up and down making complaints but the amount of things that have been appalling is just incredible. I wouldn't even know where to start. I am so sad tonight. Mums in pieces. I feel and am so powerless to help him. I'm blaming myself for not being able to come up with ideas and solutions to get help for him, but it's like walking in quicksand. It's hard to get anywhere. 

I absolutely despair at this whole thing, I really do. 

Xxxxx

Dad given two months to live.

1 Feb 2019 10:29 in response to MiGi

OMG - time to call in another GP, and demand to know from the practice’s senior partner what the h3ll this fool is playing at. Turn up in person and politely refuse to leave until you get the outcome you need. They hate having patients loudly complaining in the waiting room or reception.

Maybe contact your CCG and local news to explain the situation and ask why your Dad is being put through so much suffering.

I really feel for you and your Dad - this sort of behaviour by GPs makes my blood boil. 

 

Best wishes

Dave

 

Dad given two months to live.

1 Feb 2019 10:56 in response to MiGi

I'm so sorry that you are going through this unnessesary stress. This is a time when you need help and are having a difficult time emotionally anyway. I found it very difficult to make a fuss as it really not in my nature. I did a few times.  I do know he was glad  someone wass trying although he was also worried about me.  Perhaps if the GP will visit your Dad in his home he might understand the situation better.

Take Care

Betty 

Dad given two months to live.

2 Feb 2019 06:26 in response to davek

Hi Dave, 

I hope you're ok. I spoke to mum about it again yesterday and she's terrified of confrontation so she said were managing at the moment, dad got some sleep so she wants to see how we get on. . I said to her what about next time then? What happens the next time dad is desparate (or another patient) and the GP refuses to cooperate? Then what? Will she just say "Oh well.... Never mind." It's not just about us and our little family I've tried to explain to her that this is fundamentally wrong on every level but she's breaking down every half hour or so at the moment. She's crying much much more now than she was which is partly exhaustion and partly because dads going down hill rapidly and she can't bear to see him like it, none of us can. The palliative care doctor said about getting it in place at the surgery that I can speak to doctors about dad etc..... So when they come out next week I'm going to organise this. But mum said to me yesterday that she's fed up of everyone telling her how much help and support is available because whenever we ask were told its at least at 3-4 week process to even access this because of waiting lists and the need to be referred etc....we have asked and it is coming but in all honestly I wouldn't be surprised if all the help turns up in one go the day after dad dies because so far we've been sent a perch stool so dad can have a wash if he wants which he didn't want and has hidden somewhere. It's like dads neck has locked down. He's like a hunch back. It's gone completely forward and straight so his chin is resting in the top of his chest if that makes sense. He's in agony with it despite the painkillers working on the actual cancer bits. Mum massaged it for 3 hours last night between 3 and 6 am constantly to try to stop the pain for him. We've asked for help, maybe some holistic therapy (which is meant to be free and available) but we eventually got told to buy a heat pack and some ibuprofen. I did this obviously but seriously? The palliative care doctor said she'd have a look at his scan results to see if anything showed up and would get back to us next week. Next week!!!! I know dads not the only patient on her list and you can't just snap your fingers and expect them to magic up a chiropractor or something but it's a joke. Anyway. I'm sorry for ranting. I'm just not taking this very well and my dad deserves better as do a lot of people. I don't even like talking about this I really let go on here but even then I feel guilty about my negativity. I wish I had lots of positives to say but it just isn't like that for us. 

Hope everything is ok with you. I'm going to have a couple of hours now before I go to mums. 

Xxxxxxx

Dad given two months to live.

2 Feb 2019 06:59 in response to Brien

Hi Betty, 

Your messages are really making me feel better, and @davek ‍ I really appreciate the support from you guys. I'm sure your husband was so grateful knowing that you were there trying for him, my dad is really loving us all being there helping him he's told us he feels so lucky to have us and so loved. That gives me massive comfort just knowing he knows we're here to look after him. 

Youre so right about the emotional stress. I'm a really practical person, I'm quite blokey like that, I cut through the rubbish and look for solutions to fix things but this has floored me. And it's not even about me! I'm having to stay strong for them both and for my children, I am basically the one who holds it all together but mum squeezed my arm yesterday when I was sat on the sofa and I thought don't! Don't start that because I won't be able to do this if you do. I'm really worried about my own situation too. I had a career as a motorcycle instructor for the DSA for ten years, I gave up because I had my girls. I took a job in events when they were first born but it took its toll all the long hours etc and having to rely on my parents for childcare so I decided to take a part time job, be a partly stay at home mum and claim tax credits, not ideal but had to be done temporarily. The twins are in school full time and now that my older two are settled with their places at university I'd been organising studying a degree in psychology and counselling with the open university. To kick start myself a new career so we wouldn't have to struggle and to also give myself something useful to do because I don't like being home. Now it's all turned on its head. I couldn't take my new little job because dad got diagnosed and now I'm faced with caring for both parents. I want to care for them it's not a problem to me, theyre my mum and dad, I can't think about much else at the moment except are they ok!! But I'm scared of facing the next I don't know how many years of my life being a carer  because I won't have any money, I'll have no time, I'm facing the next part of my future out of work and on benefits and that was never a consideration for me and it hurts. I'm 42, I didn't have long to start up a new career you know? I've already this last three weeks had to let certain bills slide because it's cost a fortune, petrol, parking, extras for mum and dad and us, silly things like grabbing a coffee and a sandwich etc...I'm really worried about how this is going to work out. If I didn't have the children I wouldn't worry but I've really got to come up with a plan to make it so we're OK here and my parents are more than ok there! At the moment I'm failing to see how I can do this but I will, it'll be ok. This worry along with the fact that we are watching dad die and my mothers heart break is just horrible. My Aunty is really nice, she's just retired from nursing and she's told me I'm not on my own I can ask for help anytime and she's been brilliant and my nan and uncle so it's not like I'm completely alone but ultimately it's my responsibility to make this work you know? And I am feeling the pressure already even now which I feel really bad for saying. 

Anyway, it's 7am already-I have a bath waiting for me! I'm going to put a dress on today and a bit of makeup to lift me! I went to my parents in my pyjamas last night-it's not good enough!! Haha. Have a lovely day you two and I will let you know what's happening here real soon. 

Xxxxxxxxxxxxx

Dad given two months to live.

2 Feb 2019 09:01 in response to MiGi

Just a quick note to let you know I'm thinking of you. Hope your weekend goes OK. Try not to worry too much about the future right now, and get as much help as you can. Hope your Dads is not in too much pain. Take care

Betty xx

Dad given two months to live.

6 Feb 2019 05:18 in response to Brien

Thanks Betty, 

It's been a tough few days. We still can't get anyone out to see dad. The nurses, occupational therapist etc are very busy and still can't say when someone will be able to come out. We've rung all the support numbers we were given by the palliative care team and the hospital but we go straight to answer phone and nobody calls back. Mum finally got through to the surgery practice manager yesterday who is investigating the GP refusing to write the prescription for dad and the other failings we've experienced so far but dad still hasn't had the prescription . Mum had been ringing all week as she wanted help to bath dad, help to get him to eat and drink because he won't, and help with his neck because his chin has been locked down into his chest for over a week now and he's in agony. She is physically having to hold his head up for him half the day now and he is in agony. The palliative car team did say they'd sort it out last Thursday but so far nothing. She finally got through to the nurses yesterday but was told they're still too busy to come out but he's on the list they just can't give her an exact date for when they'll be there. To shut her up I think, they said she can pick up cushions and a gadget thing for his bed that we can pick up tomorrow or wait 10 days for it to be delivered. If I can't fit them in my tiny boot then that's another waste of nearly two week, not that we want gadgets, we want help and support. Mum was angry yesterday and sobbing. It is horrible. I'm there everyday but I can only do things like shopping, cleaning, sit with dad while mum has a bath. I'm not medically trained, I've no experience with cancer and I don't know what's happening to dad or what to expect will happen etc... I keep telling mum it'll be ok but it won't. Dads gone down hill massively and she knows it. This is the most helpless situation we have ever been in and I can't believe it. We are two minutes from the best hospital in Wales in the middle of a city and nobody can get to us. Dad was given 2 months to live a month ago now, I just can't see how this is right unless they've just written him off and haven't told us. It feels like he's so ill that they think that as he's dying soon anyway it's pointless spending time and resources on him. I don't know I might be wrong. He has the results of the biopsy (finally) on Monday but mum called me heartbroken yesterday morning saying she didn't think he was going to make it to then. But then he perked up randomly and ate something. It's a massive horrible roller coaster. If I get diagnosed with cancer ever I'm going to just swallow all my pills in one go because I am not going through this. This is inhumane and dad even said to me the other day he can't live like this, he almost wants it just to be over. Xxxxxx

Dad given two months to live.

6 Feb 2019 09:45 in response to MiGi

Such an awful situation - and they wonder why people dial 999 and move their loved ones to A&E by ambulance for pain relief.

"Very busy" just doesn't cut it - patients like your Dad are who they should be being busy with! What higher priority could there be for a palliative care team? 

Why not copy and paste your post and email it to your MP and AM asking how they'd feel if their parent was being ignored like this, copied to your local press and TV station? It couldn't possibly make things any worse. This is an intolerable and inhumane state of affairs which no-one should have to put up with. 

I feel so angry on your behalf - I wish I could offer you more than sympathy.
Dave

Dad given two months to live.

6 Feb 2019 13:59 in response to MiGi

That's awful, I think Dave's last post was correct, take it to the papers or TV. I keep hearing how great the palliative care teams are and I'm yet to be convinced. People are constantly saying how wonderful our NHS  is but as far as I can see its just an utter shambles.  I understand the NHS needs more money from the government and absolutely agree with it, but thats no excuse for being rude and acting so badly. I'm so sorry for the way your Dad is being treated or rather not being treated, its a hugh strain you can all live without. You express yourself well and should write about your Dads treatment everywhere you can. Take care

Betty

Dad given two months to live.

13 Feb 2019 07:55 in response to Brien

Hi there! @davek ‍ and @Brien ‍ 

 I'm so sorry it's taken me a while to come back, things have been a bit upside down but I have an update. 

Thanks so much for your help and advice. The only reason I haven't gone public is because I just couldn't bear the focus being on me I'd find it really stressful although I am going to sit down at some point and write letters to everybody who has failed him. I'll ask for your help with that guys when the time comes if that's ok? 

So, after a few days where mum was calling me every morning in pieces saying dad was very ill and not eating, wouldn't make it to Monday's appointment etc... He did survive and we went to see the cancer specialist. 

Originally like I told you he was given 2 months by the consultant who wasn't a cancer specialist. On Monday we saw the specialist who did his biopsy and she said that without treatment he has 6-12 months. He's got a letter with an appointment date with the oncologist coming out in the next week or so and will be offered treatment. So they haven't written him off like we thought. 

I'm a bit confused but I'm going with it. Dads gone down hill massively, every day he's getting worse. His neck is still in his chest, he's in agony but the physio therapist that came out literally popped in for twenty minutes last week because she was so busy. She gave dad some exercises to do but like we told her he's in too much pain to do it. However she said he has to try so we've been trying to help him do it. But basically on that we're all taking it in turns to massage his neck constantly to try to relieve the pain a bit and it's not improving. She can't come out this week but hopefully she'll come next week. 

The occupational therapist came out and couldn't do anything. She said his neck is like that because he's breathless and it's the automatic position we take when we can't breathe so there's nothing she can do about that except physio but it's hard to get an appointment. The consultant thinks it's because of the morphine so she changed his pain killers, however she made a mistake on the prescription so I couldn't pick it up, I'm going to get it this morning 2 days later. He's still not eating, but they keep saying the same thing little and often and drink fortisips. He got dehydrated on Saturday mum called the doctor and was told if he didn't drink a cup of water every hour he'd have to go to hospital that night so I sat there all day feeding him coffee, water and lucozade through a syringe because I know he doesn't want to go to hospital and luckily I managed to rehydrate him. He can hardly walk, is hunched over hardly talking and if he does talk it's one word and so quiet we can hardly hear him. The paliative care team couldn't come out this week because they're over booked but the consultant said they had to come out urgently yesterday however they didn't show up. The appointment is for next Thursday so I wouldn't be surprised if they stick with that despite the urgency. I'm just a bit sceptical. I hope they aren't giving mum false hope by now saying 6-12 months, longer with treatment. We feel like he's near the end but we're not experts but mum thinks we've got him for Xmas and that he can keep having treatment to keep him alive for ever. It's just a bit of a jump to give someone two months and then change it to a year? And he's so ill. 

I can't go back to work because I'm now looking after them full time. I drop my girls at school and go straight to mums to get him out of bed which takes literally hours because he's in such a state. I stay there until 3.15 when u pick up my girls and then I stay on stand by for them when dad has a panic or something happens or mum just breaks down and can't cope. I WANT to look after my parents but obviously I have to as well. I'm just really worried about how I'm going to manage. Mum begged me to look after them and said they'd fall to pieces without me and I know that I just need to find a way to cope. 

Yesterday I couldn't get him to drink much. That was sad. He took a lempsip (he has a chest infection) and water with his meds but that was it. I haven't heard anything over night but mum tries really hard not to disturb me in the night because I have little girls I have to get to school etc plus she wants me to sleep so I'm able to cope ok, which is so thoughtful but she's up most of the night with him because he keeps freaking out. He's hallucinating and going away with the fairies. He made me go outside on Friday to tell the children to stop playing on the road. He was totally stressed that they'd get run over but there were no children there. It's really sad. If he has moments where he can talk he talks about stuff that hasn't happened like he's been dreaming. I don't know. It's all over the place. 

My sons student housemates uncle got diagnosed with cancer last week, early stages but he's starting his treatment this week already. They live in Winchester. I thought dad would have started treatment straight away too. I'm just confused and tired. I didn't sleep all night. Normally I'm ok but it's all going around in my mind at the moment. 

Thanks for being there guys. 

Tracy. 

Dad given two months to live.

19 Feb 2019 19:28 in response to MiGi

Hi,  

We had the appointment with the oncologist today. 

Hes got "a few months, not many" now and is not eligable for any treatment. The consultant said its about making him as comfortable and as well as possible now so that he can enjoy the time he's got left. I wondered how they jumped from 2-3 months to 6-12 months. Last week they said this appointment was to discuss his treatment options but today they said no. I don't understand it all. I knew they'd written him off. 

Xxxxx

Dad given two months to live.

19 Feb 2019 22:49 in response to MiGi

Hi. I'm sorry to hear about your dad.  I'm in a similar situation with my sister. She is 47 and on 1 Nov 2018 she was diagnosed with stage 4 lung cancer with a pleural effusion (fluid around the lung) and was given 2-4 months. She had an operation to drain fluid which failed.  They tried it again and it failed again. She had one dose of immunotherapy but is very poorly and needs oxygen most of the day/night and has been told by her oncologist that the treatment hasnt responded as well as they thought so they are stopping it.  She then went to an oncologist appointment last week and was offered chemo.  She was given a week to make a decision as to whether she wanted to go ahead with the chemo treatment.  However during that week she was admitted to hospital as her leg swelled up and they found clots on her lung.  She stayed in for a couple of days and was discharged at the weekend. She has now asked her oncologist for another week to think about it as so much has been going on.  She has nurses round twice a week to drain fluid from her lung via a tube that is permanently in her.  She gets really out of breath just walking around her flat and has to sit down and have breaks if she goes upstairs. She has lost over a stone in weight and her muscles seem to be just disappearing. She has an oxygen therapy machine installed in her home.  I'm not sure if she will still be able to have the chance to have chemo because of the blood clots found in her lung but to be honest I'm not sure if she wants to do down that route anyway as the side effects could be really horrible and she has been told if it works it could give her possibly a few more months.  Maybe your dad is too poorly for treatment.  I think this dr probably has to weigh up the odds as to whether the treatment could make him worse than he is at the moment. It's absolutely heartbreaking watching a loved one suffer.  Take care x