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 

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

So sorry to read about your loss and the terrible circumstances.

I’m so sorry for your loss, and horrified at what your family has had to go through, especially at the end. This should never happen to anyone. xx

Hello my sweet.  I’ve just read every post you have written and your “about me”. I know you want to help people and that you are one of the sweetest people I’ve ever encountered on this site.  The way you have documented your your journey and your dad’s illness have made me feel like I know you and your lovely little family.

You did good, girl.  When you look back and maybe re read this thread, you should be proud of all you did for your lovely dad and your poor mum.  What a superstar.  How lucky your dad was to have you.

I hope you get justice for your dad. It’s disgraceful how they treated him and your family.

I lost my beloved mum on 11th Sept to Ovarian cancer after a 2 and half year illness. She went very suddenly in the end. Her poor ravaged body just gave in.  My dad’s last memory of his wife of 54 years were the ambulance doors shutting as they pumped on her chest.  He went back in the house to wait as they told him they would continue for 20 mins.. after 25 he went outside to see what was happening and the TWO ambulances had driven off with her without telling him what was happening or where they were going.  He had to phone 999 to find out where they had taken her.  We all got to the hospital at different times and I got there first and was told on my own my mother had died. They then told my husband, then my dad when he eventually burst through the door of the a room we were huddled in.

it’s a living nightmare 

Laura x

Hi Laura, hey everyone, 

Thank you so much for such a beautiful message. I’m shocked and so hurt by the lack of care and compassion and consideration to the patient and family sometimes. I just can’t accept it so I think I know how you feel. 

My dad was left without pain killers most of his final hours and eventually it was so dramatic and heart breaking he told me he was ending it himself and took his oxygen mask off. He said it was too much, hurt too much, couldn’t wait and wanted to die. I begged him not to do it I tried to get his mask back on him but he said no let me go I’m sorry I can’t. He told mum and I he loved us so many times and said sorry but he couldn’t do it any more. I said to him you will die now if you don’t put this mask back on and he was adamant. My mum tried more to stop him but I had to pull her back and tell her he has decided he has had enough, let him go and she did. It took him 45 minutes to die after the 20/30 minutes of begging for help and no one would come. The nurse was too busy, 3 times we had our buzzer turned off by a HCA. I told him dad needed help immediately then when dad decided to kill himself I told the HCA dad was committing suicide if he didn’t get help NOW dad would die. Still nothing. During the 45 minutes of dad dying, I ran out to the nurses desk 4or 5 times for help each time the nurses just looked at me. They weren’t even busy, every time they were there. I can’t believe it. What I saw I’ll never ever ever get over. When he stopped breathing Mum and I thought he was dead but we weren’t sure. We decided to see if we’ve could hear a heart beat. Mum couldn’t hear anything but I saw a flutter in his chest so I said check his pulse and there was nothing. We just stood there in shock I think or disbelief. I don’t know. I went back out to the nurses desk and N was sat down chatting. (Don’t ask me how I kept my temper because I will never know). I told her I thought dad had died, she said he hasn’t died, he’s fine, I said can you please just check him. She huffed rolled her eyes and said fine I’ll come now. 

She came in and freaked out completely. She started shouting at my mother why did you take his mask off, why would you do that, I can’t understand why you would do that. I said he took it off he gave up. I said I called for help so many times and you were too busy. She grabbed the mask and put it back on him and I told her he had a DNR she said she’s didn’t know. She’s hadn’t seen his notes, she still had the scrap of paper from handover and she’s Said all she was told was that he had an infection but was responding well To antibiotics. She said he wasn’t supposed to die tonight. She started saying this is a shock for me. I wasn’t expecting it. I walked to the door of his room to just breathe before I lost it completely. Then she told mum she was in shock was scared she’d lose her job and we’d report her. Mum was trying to keep the peace in front of dad and reassured her that we’ve wouldnt report her she wouldn’t lose her job etc.. then N said you’ve just got to appreciate this is a shock for me. So yes I lost it. I’m embarrassed to say but I flew to his bed and shouted what the duck is wrong with you? He can still hear you. I don’t give an F how shocked you are! Are you completely cra y it’s not about you my mothers husband just died, that’s my dad. F xk your job. Mum and I were asked to leave the room and we’d sat outside. N approached numb and said “can I please explain this from my point of view?” I yelled at her I don’t care about you or your point of view you disgust me what you just did was disgusting. She went to walk away then she came back shouting at me how dare I speak to her like that and who did I think I was. I’m just empty. 

I  am so sorry. As I said months ago I too was appalled at the treatment or lack of it my husband got in the hospital. He was in absolute agony. Thank god he discharged himself and died peacefully at home. I agree with you so much. I still get angry about the way my husband was treated and how he suffered and when I think of it its still so fresh.  It has now been 10 months. I am learning to live alone and have had councelling. I can tell you the grief will ease but the anger I feel regarding the treatment or lack of it  also lack of support is still fresh. Please look after yourself and your Mum. You are a excellent writer and I  hope you write a book about our NHS. Also give interviews to anyone you can call your local radio station,  local papers. I wish I had, but its a difficult time and I understand that as well perhaps later as you have documented what has happened to your family and your poor Dad so well.

Thinking of you

I feel like I should never have had that conversation with my dad and watch him do it. I feel responsible that he was in so much pain that he felt he had no option but to kill himself. And I feel angry that none would listen and help and stop it. I blame myself and I know it’s not my fault but I let him down. 

In a hospital in a place where he was meant to be safe and we were supposed to be supported. They said he would be pain free and he’d go peacefully. I can’t accept what I saw. Everyone has been so apologetic, they’re encouraging my complaint, but they refuse so far to accept it was suicide. They said that whether he’d died then, a week later or a month later it would still be the cancer that killed him. But it wouldn’t and it didn’t and not like that. Not an hour of absolute torture. And when they say he didn’t kill him self it tries to rub out the most heart breaking conversation I ever had and the most horrific thing I’ve ever seen. I don’t know how to even move forward from this.

I’m absolutely stunned by this MiGi.  

My poor mum was in xxx and although we had a few problems with meds taking too long, once she was moved to the Hospice ward (she went 3 times in all) she received the most unbelievable care imagineable.  They were angels walking on earth.

that being said the NHS nurses, did annoy us many times. 

I hope to goodness that you take this all the way. It’s disgraceful, heartbreaking and unforgivable.

Stay strong angel 

I'm sure your Dad felt he needed that conversation, and you were there to hear him, he was not alone, this is small comfort I know. When my husband was in agony he said" you woud not do this to a dog" he said it to the Doctor as well . It's just awful and so wrong that people should suffer like this. You will be able to move forward, just go from day to day for now, everything is still too raw for you to think straight. Just look after yourself. Thinking of you xx

Betty

Hi ...migi ..

I'm super proud of you .. firstly for not throwing that staff out the nearest window .. and proud of you holding it together for your dad under unbearable sercomstances... I'm so glad he won't ever have to go through that again .. but mostly I'm so so proud of you, loosing it, and telling them strait , how incompetent they were .. 

She was just scared of loosing her job .. and if I were you, I'd document everything that night .. and then in the future when your ready ... make it official ... they should hang their heads in shame... that's beond crule ... 

There's not much else I can say .. except I'm sending you a vertual nanny hug... they are saved for my wonderful granddaughter Emily... but I know she'd like you to have one ... 

Chrissie x

Thank you so much, I know I’m not the only one going through this and I feel for everyone else as much as I do myself and my family. It’s so wrong that in this day and age these things happen. When you think about all the incredible things doctors/scientists etc can do they can’t even keep people pain free for a relatively short time. It makes no sense to me. My dad suffered all the way through whether it was a lack of resources or people just not knowing what to do but in the end it wasn’t that it was a bunch of individuals who really didn’t give a damn. His nurse in particular. 

After it happened and we went home the sister on the ward called me but I couldn’t speak it was only a couple of hours after he’d died. But she was so upset and she told me to complain,she had a form there for me to pick up and she did say to me to write it all down straight away because I would forget a lot of it if I didn’t so my daughter And I wrote it all out together there and then. 

Ive got a solicitor, I’ve contacted the coroner because I don’t agree with what’s on the death certificate so I’m waiting for him to decide whether he’s going to investigate. Everyone’s  being so apologetic and so far they just seem to want to help get to the bottom of it and find the answers we want. The hospital have also asked if I’d do a patients story to be used for training nurses in what not to do and ive agreed when this Is all sorted out that’ I will.

It’s bad enough the patient suffering but they don’t seem to understand the impact on the family. My mum is heartbroken, she feels like me that we let him down etc...

hearing that Betty is suffering like she is it’s mental torture and so cruel. Thanks so much for my nanny hug! My  girls are giving and receiving lots of those at the moment I think they’re helping to keep nan strong. Xxxxxxxxxx

Thank you so much, I know I’m not the only one going through this and I feel for everyone else as much as I do myself and my family. It’s so wrong that in this day and age these things happen. When you think about all the incredible things doctors/scientists etc can do they can’t even keep people pain free for a relatively short time. It makes no sense to me. My dad suffered all the way through whether it was a lack of resources or people just not knowing what to do but in the end it wasn’t that it was a bunch of individuals who really didn’t give a damn. His nurse in particular. 

After it happened and we went home the sister on the ward called me but I couldn’t speak it was only a couple of hours after he’d died. But she was so upset and she told me to complain,she had a form there for me to pick up and she did say to me to write it all down straight away because I would forget a lot of it if I didn’t so my daughter And I wrote it all out together there and then. 

Ive got a solicitor, I’ve contacted the coroner because I don’t agree with what’s on the death certificate so I’m waiting for him to decide whether he’s going to investigate. Everyone’s  being so apologetic and so far they just seem to want to help get to the bottom of it and find the answers we want. The hospital have also asked if I’d do a patients story to be used for training nurses in what not to do and ive agreed when this Is all sorted out that’ I will.

It’s bad enough the patient suffering but they don’t seem to understand the impact on the family. My mum is heartbroken, she feels like me that we let him down etc...

hearing that Betty is suffering like she is it’s mental torture and so cruel. Thanks so much for my nanny hug! My  girls are giving and receiving lots of those at the moment I think they’re helping to keep nan strong. Xxxxxxxxxx

Hi migi i hope you don't mind me putting something on about my wife she went into hospital week last Sunday with a bowl blockage, we've already been told several has a possible prolapse, she's had problems all her life with bowl, she was crying and screaming with the pain of trying to go, hospital put her on soluble power lax and tablets two at a time, by Thurs it was slightly runny but all the time she was still screaming with the pain they put her on paracetamol three times a day (completely useless) then they decided she had a water infection so antibiotics Monday they decided she could go home Tuesday evening though she's still in pain and still running, anyway home Tuesday, still run and pain Friday, occupational therapist comes called Dr to see her, Dr's phone back say to call ambulance, so hospital again they say she's still got infection but no medicine not bothered about the pain or running and send her home that night, so I've got to get in touch with GP again Monday to sort out antibiotics and ask for pain relief for her, which should have been sorted by the hospital,,,, hope you don't mind me butting this on with you father but wasn't sure where to do it and hospital wise it showed it as a mess again, Mrs is slightly better but a long way to go yet,... Billy 

Hi there, 

I just don’t think anyone needs to be in so much pain they’re screaming. I’ve had experiences like that. I’m allergic to morphine so after I had a c section with my twins and I was put back on the ward I was ok then when all the other mums had their pain killers they went off to get whatever I was having instead and forgot. I can handle a lot of pain but I was in agony. I had a really old “experienced” midwife “looking after” me and she just had a go at me for being a lazy uncaring mother. She shouted down the ward to her colleagues “ This lady has two beautiful girls and can’t be bothered with them, it hurts too much!” And they all started laughing. She dragged me into the shower screaming and it was only later after hours of me crying and screaming that the doctor came and told me they’d forgotten to give me painkillers (any painkillers! Because I had to have different to the rest of the ward. The midwife came and apologized to me and because I was so happy to be ok again I just said it’s  ok don’t worry. BUT I should have complained because keeping quiet doesn’t bring changes. 

I don’t know all of your situation but knowing what I know now I wouldn’t be a quiet patient and wait Calmly. Every time your wife is in agony I’d call an ambulance. And I would demand decent painkillers that work and a full look into what is actually wrong with her. Ie get a ward manager, demand to see the consultant and phone your solicitor right in front of them for medical negligence and ask him to come to the hospital for you’re first free consultation.  I have changed my thinking after this. I’m sorry i can’t help but people are dying in agony and it’s 2019. If the system isn’t working to care for our loved ones maybe we have a responsibility to complain like crazy and make a huge fuss every time we’re not happy rather than having faith and being so trusting in the people who are meant to care because in all honesty sometimes they just don’t. Personally I couldn’t watch or leave someone in pain it goes against who I am, Ive stopped to help a few people in the street over the years who have collapsed etc even just being there talking to them helps ive seen it. Maybe nurses get hardened to it I don’t know but my daughter is a student nurse and she can’t stop crying. She’s said she’s not even sure she wants to do it anymore after this. She says that this isn’t how you’re trained at uni, it’s not how it’s meant to be but she’s been on placements now and seen her granddad die and had her eyes opened to the real world. I am so full of doom and gloom on here and i am so sorry. I am the most positive happy person you’ll ever meet but some things kill a bit of your spirit don’t they? Xxxxxxxxxxxxxx

Hi migi yes i agree it kills your spirit im(always was chearful and caring) but lately i get so mad at the way things are going, i still don't understand when my wife has got an infection in hospital why didn't they give her something and something for her pain that works, same as me taking her home with dierier, soon as i got home i had to fetch some pads and things because it was all over the place, all the hospital was worried about was getting rid of the blockage, sorry I'm ranting a lot if i don't I'll probably explode, be interesting to see what the Dr says on Monday if i can get in touch, thanks for listening,... Billy