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

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

Chrissie, it’s the weirdest thing and I don’t want to scare anyone so it could be my imagination but three times now I’ve been doing something and I’ve felt a big hot almost blanket of love being wrapped around me. The first time it happened I was stood outside and it came with the overwhelming smell of the most beautiful perfume and I know it’s my dad. I can’t even explain how I know. But like I said although I find it comforting it could be me just over thinking and I don’t want to make anyone feel uncomfortable. I think we will be ok because of the children and I think you’re right. My mum has a lot of issues from a “hush hush” childhood and it’s got to be better for children if you try to explain as much as you can. 

I’m going through the complaints process at the moment. The same thing (although the patient didn’t die) happened on the ward where my daughters friend was on placement and she reported it to the uni. It’s just not fair on vulnerable patients and the impact on the families is unbearable. I don’t believe that I personally will make a difference BUT I think that by pushing my complaint as far as possible it helps stop it being brushed under the carpet and maybe the next person it happens to will be taken more seriously. The more people who speak up the better I think but it’s hard to complain they don’t make it easy.

Ive gone and caught a chest infection now because I’m run down with it, I’ll be coughing and sneezing all the way through dad’s funeral the way it’s going bless him. I miss him so much. He always had a tub of Vick’s on him and I need that now. 

Big hugs and lots of love. I do love you guys. I can’t thank you enough for chatting to me and helping me along. I just can’t believe I found such an amazing group of friends at the worst time in my life. THANK YOU. Xxxxxxxxxx

Oh how wonderful , a blanket of love .. well to those of us that know there's something there .. we know you really did feel your daddy ...  Vinny Jones was on t.v a.m .. talking about his wife .. that hard man of football and those films .. well think he had everyone with a big tear in our eyes ... one part he recalled was the time he stood outside their home and there was arc of light on the sky, that just stayed there .. then before going inside blew a kiss to the arc and it just flew away ... 

We can't see the air we breath, but we know it's there .. so are our loved ones ... just believe .. it doesn't matter who else believes .. many have missed signs because they tried to logic things ... my oldest son , who my mum adored more then anything .. years later had a bike crash .. half his side was brused and bones broken ... I rushed to the hospital as they took his helmit off there was a perfect kiss mark on his forhead in the colour my mum always wore .. she was always leaving lipstick on his forhead ... there was nothing in the helmit that could have caused it ... yes he was badly hurt,but did she cushion him to keep him safe and leave her mark to let us know ... yes I believe ... 

You think you may not have changed anything .. but some one who works in hospital, care home may have read this, and changed how they do things ... because of you... Chrissie  

Please go and see your GP for your cough. When my husband died and prior to his funeral both of my sons caught pneumonia, I think they picked it up in the hospital visiting their Dad. I felt like I was living a nightmare visiting them in the same hoapital that I hated, where my husband was treated so bad. That's why I feel you should take extra care of yourself.It is definately worth a visit to you G.P The experience you had sounds wonderful treasure it. xx

Betty

Ok, Is everybody ready for the latest installment of our hellish journey? I can’t believe I am writing this... 

You know how I was talking about my dad’s funeral arrangements earlier? Well here we go......

4.30 this afternoon the funeral director called my mum and asked her to pop round to his office to talk. 

She came back 20 minutes later absolutely broken. 

Hes been trying to get my dad’s body into “care” now numerous times and the hospital keep refusing to release dad’s body because the doctors aren’t signing the paperwork. (We didn’t know any of this until 4.30 today). 

The paperwork had to be in place by this evening but despite this they still haven’t done it and will not release him. 

So the funeral director has cancelled my dad’s funeral. We can no longer have the chapel we wanted as we had the last date before it closes for winter and that’s it. 

I tried calling the hospital but everyone had left for the day already so I have no idea whats happened. No body from the hospital has contacted us. We are just shocked and confused. I honestly just don’t know what to say. Xxxxxxxxxxxxxxx

Hey Betty, how are you doing? I took your advice and I called my doctor. They didn’t have any appointments but he’s calling me on Friday so hopefully I’ll be able to get something for it. I can’t talk properly now my throat has gone really scratchy. I think you’re right about picking it up  from the ward, I’m run down at the moment too I haven’t been eating much and what I have had hasn’t been too healthy-lots of chocolate as I’m rushing about pretty much. I’m cooking lovely things for mum but you know how when you’ve cooked you don’t want to eat? I always get like that so she’s doing ok but I just don’t feel like eating myself. Did you read my latest installment? I can’t believe it Betty. I was trying to think positively about the funeral and I was trying to focus on making it as lovely as possible for my girls really because they’re so little but even that’s all gone wrong now. If someone told me this whole story I think I’d have trouble believing them you know its been so awful. 

How are you feeling at the moment? Reading my experiences must bring things back for you and it’s so hard. But lots of love and hugs for you. Xxxxxxxxx

Thank  you for thinking of me and taking the trouble to write,  I know it sound so ridiculous but as that actually happened to Paul and Alan, my son's I was just hoping it won't happen to you.  When it happened to them I went to my GP who actually gave me antibiotics, so I suppose I was lucky, lol nothing about any of this is lucky but you know what I mean.  I think stress makes us all vunerable to all sorts of stuff and it seems to happen when every one else think its all over, so just take good care of yourself.

Betty xxx

It does bring it back for me, I actually could not even look on here for a while, it's fine if it happens to you, just do what you need to keep yourself going, a day at a time seems laughable but it's what you do. xx Hugs and good thoughts to you.

It does bring it back for me, I actually could not even look on here for a while, it's fine if it happens to you, just do what you need to keep yourself going, a day at a time seems laughable but it's what you do. xx Hugs and good thoughts to you.