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 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

Hi migi glad you've got someone fighting on your side it'll sertenley help, hope everything gets sorted so Monday is the day but make sure you look after yourself best wishes.. Billy x

Hi everyone,

Its all sorted out we cn have the funeral Monday. The doctors just hadnt had time to fill in the paper work but they did it and the bereavement nurse drove it to the crem herself for me and called the funeral directors to tell them the funeral was back on. What a fuss. But Im so happy we can stick to the original plan and have it on Monday. 

The minister came out to see us again yesterday. I have this awful cold so I was feeling really sorry for myself and kept bursting into tears every five minutes but mum was really strong and asking all the right questions. My dad is at the funeral home now so at least hes out of the hospital but they moved him yesterday and it really unsettled me. I cant explain why I just feel like he doesnt want to be moved around. Ill be happy once his ashes are in the urn and on mums sideboard which is what he wanted so that he could still be there with us all. 

My letter of complaint is almost done. The advocate lady sent me a copy and I only had to ask her to change two little things so shes doing that, then shell send me a draft copy. If Im happy ith it (which i will be because shes done a good job) then she will send it off probably Tuesday she said. The health board have 30 days to respond then and shes asked for us to have my dads notes too which will be interesting.

I dont think Ive got any other news. Its just a case of getting through Monday now.

I hope everything is ok here with you guys. Hugs and love to you. xxxxxxxxxxxxxxxx

Hi migi glad to hear all arranged for Monday, hope it is only a cold you've got amount of running about you've been doing your probably run down be careful, hope everything goes well for you and your family next few days days, you really nead a rest anyway best wishes for Monday... Billy 

Hey Billy,

I know Im absolutely exhausted. I cant sleep though. Ive been like it for months . I have a telephone appointment with my doctor today so hopefully he will do something about my cold Im also going to tell him about my lack of sleep. Its stress. Im just not able to switch off. I sleep for a few hours then Im wide awake. Like now, Ive been uo since about 4am and Im so tired but if I lay down Ill just lay there annoyed that Im awake!! 

Are you ok? How is everthing?

xxxxxxx

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

Hi migi bren nearly right now had a bit of good news, years ago bren had cancer on her top lip it started like a cold saw then changed. Any way they cut it out, other month a sort of blister came right over the scar went to Dr he wasn't sure anyway we'd took her to specialist it wasn't cancer a big relief for us both, I've got new oncologist he's sending me for pet scan he wants to check my cancer isn't coming out other places (not a nice thought) I know it's coming back slowly, but he's not to bothered, again hope all goes well from now on... Billy xxx 

Hi migi bren nearly right now had a bit of good news, years ago bren had cancer on her top lip it started like a cold saw then changed. Any way they cut it out, other month a sort of blister came right over the scar went to Dr he wasn't sure anyway we'd took her to specialist it wasn't cancer a big relief for us both, I've got new oncologist he's sending me for pet scan he wants to check my cancer isn't coming out other places (not a nice thought) I know it's coming back slowly, but he's not to bothered, again hope all goes well from now on... Billy xxx