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

Hello everyone, 

well I have half broken down today. Not completely but a bit. I’ve still got my make up on and I’m outside the hospital where my dad is because my daughter is studying here and she’s having her vaccines. 

I couldn’t sleep last night, I’ve got a headache I feel sick and I’m fed up. I keep bursting into tears and it’s not my dad it’s the stress of it all. I’m supposed to start uni myself soon so I’ve emailed to ask for extra support to get started and I’ve got documents in my bag to post to finalize my student finance application.  My mother has gone even more mental. She was sobbing yesterday and it’s all about the guilt she feels for letting him be in so much pain he did that to himself. It’s like [@Brien]‍ said it’s amazing how we blame ourselves for doing our best but being failed by so called professionals. And just like you said I’m tellling her she’s not to blame and to think of all the good things she did for him and how well she did but that’s not what is staying with her it’s the horror and the images of what she saw, which were now told didn’t happen. It’s early days for us but I know it will still be on our minds probably forever like Betty. It’s not something you can accept it’s too big for our brain to cope with I think. I accepted bereavement support but that was when I thought it was straight forward what dad had done. Now I don’t know what ri say to them because My account of what I went through officially didn’t happen so I don’t feel I can talk about it with them as they are part of the cover up. I’m just confused today. I am glad you’re all here to stop me going insane with this. Xxxxxxxxxxxx

Hi migi i don't think bereavement support is officially hospital so you should be able to talk if you want to, it might help like the forum to rant and let off steam,, anyway good luck with your future what ever you do... Billy 

Try not to allow what others say upset you. You were there when it happened no one else that is the truth and will always be the truth. You know exactly what occured there and other people who witnessed it are not being honest for whatever selfish reasons, and yes worrying about your job when someone is suffering is amazing but I have seen it happen too often when things went wrong for my husband. It seems no one in hospitals want to accept that any staff can do wrong.  However you know, and I understand, that when people are just not facing the facts or admitting the truth how hurtfull that is and just causes more suffering. I admire you immensly and am thinking of you like everyone on here so just do your best 'all any of us can do. Some people are better at doing stuff then others and you are one of these  xxBetty

Hello everyone, 

How are you all doing? I’m awake at this silly hour again and already having a cup of coffee so not much chance of going back to sleep so I’ve put a load of washing on and popped in to say hello. 

Ive taken [@davek]‍ advice and been in touch with the people he suggested so a big thank you to Dave for excellent suggestions and guidance. I’m waiting for our advocate to rewrite my letter and then hopefully itit should be sent off to the health board this week. It’ll take up to 30 days for a response apparently so that will feel like 30 years! But at least we are on the right track. 

Ive heard a few really disturbing stories, nothing as bad as what happened to my dad yet but the same kind of thing and the reason they’re getting away with it is because mostly people don’t complain. It’s hard to complain because unless you know someone like Dave it can afford a solicitor it’s hard to know where to start. Also when you’re suffering so much grief writing letters is the last thing you feel up to doing. It’s so wrong. 

My dad’s funeral can go ahead now so it’s happening on Monday next week. Mum bought a new dress and a pair of boots yesterday and we got little dresses for my twins. So we are getting there-wherever “there” is! I hope everyone is ok here. Thank you guys for all the love and support. Big hugs. Xxxxxxxxxxxxx

Hi migi glad your getting things moving and arrangements have been sorted, trouble now like everything is waiting is your mum feeling a bit settled now hope she is, and you of course this might sound wrong but hope it's a nice day on the funeral, and everything goes well, best wishes to all your family,....... Billy 

Aaawww, thank you. Mum has got a lovely dress with red hearts all over it and I’ve lent her my red heart handbag. My parents first got together at a valentines ball so she’s having a heart/love themed funeral. I have black trousers with little red hearts on them and a black top. My twins want to dress up as angels so we got them gorgeous dresses from next they’re baby pink glittery with angel sleeves. Got the fluffy angel wings coming tomorrow. Dad would let the girls do what they wanted he spoilt them so when they said they wanted to dress up we thought well dad would let them! And we don’t want the funeral to scare them so we’re calling it a party instead. I’m looking forward to seeing all our family and friends together but worried about what it will be like seeing the coffin and knowing dad’s in there etc.... But I know we just have to go with the flow and be strong. Xxxxxxxxx

Hi migi please don't get this wrong but could you do anything with the coffin, paint something on if possible (if they'll let you) so it's not so dull maybe flowers through the handles when my brother in law died he was a farmer and they'd painted tractors and and things on it it really made a difference and as he went in, the Wurzels song, "I've got a brand new combine harvester," came on there was couple of seconds of shock then everything was laughing that was how he wanted it to be he was that sort of person. God bless. You,... Billy x

Hi! 

Yes we’ve had it painted and it’s having some trinkets put on it. Just little teddies etc that the girls gave to him before he died. I’m putting a big huge bunch of fresh red roses on top of it too. We were helping the minister write his speech and the girls asked if they could write speeches too. They were so good and so beautiful that the minister said he would invite the girls to read them but if they felt uncomfortable at the time to do that then he would read them. We’ve got my cousins carrying dad so the girls know he’s safe. We’ve also booked a venue with a play area so all the children can play and enjoy themselves. It’s so hard because it’s so sad. But hopefully there will be a lot of laughs as well as tears. Xxxxxxxx

Hi there hunny ...

So sorry, not been on here much lately so missed your thread ... l told my son at my mum's funeral, we were saying good bye to nanny .. never said those words that frighten us, let alone kids ... my son was 7 and he never developed the fear of funerals like I did when everything was hush hush don't tell the kids .. 

You know l was dreading mum's funeral... thought I'd want to hold on to her coffin and not let go .. but you know from that morning when we were following behind, l had this overwhelming feeling... she was saying "I'm not there, I'm right beside you" and felt so calm .. and there was only one star in the sky .. it followed us there, and never wavered, never moved ... 

You have so much love and respect from so many of us here .. you've touched our hearts .. and I hope your dad's journey will stop others from being treated so cruelly... everyone that works with terminally ill should read this thread and know everyone can make a difference...  those So called "carers" etc should hang their heads ..  

My thoughts and heart goes with you when you go to his celabration of his life ... I think we'll all be vertually there holding you up ... l send you my biggest hug ... and love ... chrissie  x 

Good morning. Sending you mu love and hoping you are doing Ok. It is amazing how you have coped so well , thank you for keeping us updated and I hope all goes well for you next Monday. Keep up the wonderful work you are doing, I'm absolutely sure there are a lot more people in these awful situations in hospitals, and not just cancer suffers. So thank you. x

Betty

Good morning. Sending you mu love and hoping you are doing Ok. It is amazing how you have coped so well , thank you for keeping us updated and I hope all goes well for you next Monday. Keep up the wonderful work you are doing, I'm absolutely sure there are a lot more people in these awful situations in hospitals, and not just cancer suffers. So thank you. x

Betty