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

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.

Hi migi just noticed you've got more problems caused by the hospital it's unbelievable after everything was arranged for the funeral, if you're feeling rough you want to try a drop in clinic it'll be quicker than Dr especially if you have picked up something, remember your going to be run down what you've been doing lately and not eating properly Fridays a way off especially if it's only a phone call, not to see you, or try A&E, hope you get sorted soon best wishes. Billy x.

P.s were all here rooting for you, but get well soon, hope your mum is OK with all the hassle. Again best wishes.. You need them.. 

Hi Betty, 

You’re right my friend I’ve mentioned before who had cancer in her thirties has been saying it to me. She has a lot of stress herself so I’ve been saying it to her, you know, take care, look after yourself too. Yesterday she fell over in the street and grazed herself to pieces. She texted me to tell me and said that’s enough for today, she was putting her feet up and her husband was bringing her a cup of tea. They say stress is a killer and it’s easy to see why. I think a lot of people THINK they have stress but on here I think we all know what real stress is. I did ear last night afterwards but you feel a bit numb and not yourself so it’s hard to think about what you need because like you said you’re just taking it day by day hour by hour. I understand you not feeling able to read things on here for a while too-there were times in the night where normally I’d read and offer a Bit of advice to people but I couldn’t. I just Felt too empty and numb. I don’t know how you are coping with what happened, we are struggling it’s horrible. It’s bad enough that your husband and my dad were in agony and treated so badly but they’re at peace now. But for us you and us it feels like we will never be at peace because we will always know what happened and how they suffered. It’s awful. Families shouldn’t be put through that pain. But it is one day at a time and the sun is shining here. What’s it like with you? I’ve already had a phone call from the hospital they’re trying to release dad’s body. They’re going to call the crem and try to get the funeral back on for Monday but Mum’s been up all night in tears. Sending lots of love and big hugs to you and thank you for mine. Xxxxxxxxxxxxxxxxx

Hope your doing OK and they will release your Dads body. My husbands funeral was delayed as the GP was waiting for reason for death from the hospital. No one it seems wanted to take responsibility, possibly the same with your Dad. It is awful the similarities and imagine how much is going on that we have no idea about. It truly is shameful. You are doing good for others by just sharing. I cannot find the words to say how wrong and inhumane it is that people who are suffering enough should   have to do so in awful circumstances as well. You are right try as I can to forget it I never will. I am definately getting used to living alone, still don't like the dark , but can laugh at things again. Just wanted to let you and your Mum know its an old cliche but time will help you. I will be thinking of you next Monday, Love to you and your family and well done, You are helping others as well. xx

Hi Betty, I think mums doing better than she would be because she’s here with us and our house is really busy. When you have small children it helps to keep some joy and normality going. You can be crying one second then one of them will do or say something and you end up in fits of laughter. I think if mum decides to go home it will be hard for her like it is for you because it’s then that you start learning to live alone without your best friend. I’ve told mum we will never get over it or forget it but in time especially if we get answers from our complaint that we will find a new way to live. It won’t be the same, it will be different but we will still eventually be able to enjoy things again and be more at peace in ourselves. We’re a long way off that and so are you but each day  that goes by is a day of showing we can cope and we can live through it. Not that any of us should have to. The hospital are trying to release dad’s body ar the moment And are physically driving the paperwork to the crem now then they are going to sort out the funeral directors for me and hopefully get the funeral back on for Monday. It’s shambolic. I do have great support from the senior bereavement nurse though, she is fighting my corner with me. I’m supposed to be having a flu jab today Betty but I feel like I’ve already got the flu! If you haven’t had yours yet it might be worth booking it. The last thing you need is flu on top of all your heart ache. Xxxxxxxxxxx

Thanks for the reminder I must book the flu jab. My sons had pneumonia, not sure if I said that in the post. Yes Children are brilliant, my 7 year old grandson visits me every weekend, they definately keep your feet on the ground and  are great at making us feel better, unintentionally most of the time.  Hard work too though so try and take it easy. xxx

Thanks for the reminder I must book the flu jab. My sons had pneumonia, not sure if I said that in the post. Yes Children are brilliant, my 7 year old grandson visits me every weekend, they definately keep your feet on the ground and  are great at making us feel better, unintentionally most of the time.  Hard work too though so try and take it easy. xxx

Hi Betty,

My daughter and I had ours yesterday, it was fine. The twins have their at school which s really handy. I have words with my son every year over it because he really doesnt like anything like that but I normaly book him in at super drug and pay the £10 for him. Hell go if Ive paid becuse he would feel bad about wasting the money but other than that Ive got no chance! Hes coming up later to try out his suit. I had better go and wake eveyone up for the day or else itll be my fault theyre all late! 

Have a lovely day Betty.

xxxxxxxxxxxxx