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

I am so sorry to hear how yor are being treated . It must be very frustrating for you. I remember 

twice I had the audacity to complain and the second time  the hospital actually called in the police because the nurse had put the tube into my husbands lung despite him telling her to stop and take him down to the emergency room at the hospital. Despite all of this and the statements the police had even from a chaplin who was another patient telling the he had overheard her saying they woud laugh at her, Nothing came of it . The tube was left like that until the next day. I was so sick and tired of trying to fight and feeling so useless and watching my husband slowly die at the same time. Only ranting so you will understand I see the frustration you are going through. Sending you my best wishes and love. Betty xxx

Hi Migi. 

Something i just remembered from over fourteen years ago I'd just been diagnosed with addisons syndrome. (my adrenal glands don't work so i have to take permanent steroids to put into my body what the glands usto do or i go into a coma and die).

Specialist put me on two different meds, when i picked up prescription there was two more meds on it, i just took them. Saw specialist after 2 months and he played hell about what Dr had put on. He sent me for a blood test results came back and he put Me back on Dr's meds it made wonder who was the expert.

Love Billy xxx 

Hi everyone, 

I hope you are all ok and doing well. I haven't posted for such a long time but I have an update....

We heard back from the NMC on Friday and the nurse responsible for my dads care is being investigated. It took over a year for them to decide but now it seems like they are doing something. 
I am exhausted from it all and we still haven't had any answers but that's where we are at the moment. I'm not giving up, I am still fighting for an apology for what she put my dad (and us) through but it takes so long. 

Sending my love to you guys. 
Migi. Xxx

Hi migi, lovely to hear from you, glad you got paperwork sorted and in, but terrible it's taking so long to get things sorted. 

Things chaos here Brenda had a bad uti and wouldn't take antibiotics and turned nasty, throwing things at carer and me, carer thought i was at risk and called police, they thought same and called ambulance took Brenda in hospital she hit a nurse so she was checked and sectioned, she is improving but don't know if she'll ever be completely right. 

She's had 8 TIA, and she's got white matter brain disease, as well dementia  

Im temporary stopping cancer meds as always tired and lacking energy puffing very often, oncologist wants to see if meds are responsible. My cancer count is going up but sticking with it. 

Bella had a lump lucky after op not cancer. 

Hope you and yours are doing ok. 

Love Billy xxxx 

Hi Migi

So nice to hear from you. Good for you pursuing the NHS for the awful treatment your dad had. Unfortunately it seems to still going on and that is just so sad, it could and should be a wonderful health system . However its just getting worse,  so difficult to see a GP etc. Dont give up because you are helping others as well by complaining. So Thank you. xxx

Betty

I

Hi Betty!

Its so lovely to hear from you. Its been really difficult. The system is geared up to stop complaints I am sure of it. The absolute rubbish I received back from the health board after two supposedly 'Robust' investigations was dreadful. I pointed out a lot of evidence from the nursing notes, my dads drug chart etc and they refused to answer my questions. 

The NMC are more helpful and their solicitors have agreed with me but it has taken a long time and like you say it is still ongoing. I won't give up though, I think they know this now! I have almost given up a few times but I was trying to explain to someone the other day the reasons why I am doing this and its because sometimes in your life things happen that are not fair but we let it go, we can't always be arguing our case BUT sometimes something happens and it is so bad and so unbelievably wrong on so many levels that we feel we have no choice but to do something about it and thats how this got me. I feel I have to do it. 

I really hope you're doing ok, this sun is killing me-I am melting. I don't like it! But I do like how it seems to make everyone happy! 

Best wishes and take care,

MIGI

Hi Billy!! 

It is really great to hear form you. It sounds like you are having such a rough time. I feel for you. The whole cancer thing just sucks so much, I hate it. I was feeling really poorly for a while and I was terrified that I had it but it turned out I am just anaemic and have a B12 defficiency but for those few months I was thinking I cannot go through cancer in this area where the care is so dreadful, it was scary. 

I'm ok, my family is OK. Its been tough because when we think of dad now we are apologisong to him up in the sky or in his garden or to his ashes for what happened, rather than having nice chats to him where we can tell him we miss him you know and we haven't been able to really move on and remeber the good times so much because the case is still ongoing and his death and illness is totally overshadowed by what happened. 

I really hope you are doing ok despite how terrible things are for you. Somehow it seems like we find an inner strength that helps us through the horrible times I don't know but that's how it felt for me. Looking back I just don't know how we coped but at the time we just did and I know that it is the same for every single person on here too. 

Has anyone heard from DaveK? Do you know if he is still ok and doing well? You have all been such a great support for me I am so annoyed that the system is so bad. I feel like there is no need for it to be like this, its cruel. 

Please take care!! 

MIGI XXXXXXXXXXXXXXXXXX

I seriously forgot to leave you kisses and hugs Betty!! What is wrong with me?!! Obviously I am sending you the biggest hugs and kisses imagineable and lots of love too. XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

Lol. Thank you MiGi. I think of you often and the others on here. Remember there is a lot of caring people around as well as the few rotten apples. When people are ill and so vunerable it is the time that solid support is needed and someone to fight in their corner. that is what you are doing. 

Love and best wishes to you and all on here.xxxx

I am  having a grouch again. I have  tested positive  for covid on Tuesday. Apart from all the issues with this I have had a very sore  throat and this morning I had to try at least 10 times to swallow a paracetamol. Also found it difficult to talk.Tried calling my GP for advice and was told by the receptionis he was fully booked even for a call, she suggested I call the pharmacy to see if they could recommend something that might help. Still feeling awful. Our NHS service is non existant it feels to me. Im 74 and find this is just unreal. So nothing has changed for the better only becoming worse daily. Wish I could do something about it.

I am  having a grouch again. I have  tested positive  for covid on Tuesday. Apart from all the issues with this I have had a very sore  throat and this morning I had to try at least 10 times to swallow a paracetamol. Also found it difficult to talk.Tried calling my GP for advice and was told by the receptionis he was fully booked even for a call, she suggested I call the pharmacy to see if they could recommend something that might help. Still feeling awful. Our NHS service is non existant it feels to me. Im 74 and find this is just unreal. So nothing has changed for the better only becoming worse daily. Wish I could do something about it.

Hi Betty,

I feel for you, Covid is really awful. I was confined to my bed for 11 days the first time and I was so worried because of what we were all told about it. Can you get soluable paracetamol-even something like childrens calopl? I wonder if your GP when you eventualy speak to him could prescribe it and I think Boots deliver? You are so right, the care we get leaves a lot to be desired at times and its disheartening. We are so vulnerable when we are ill we really need support but that is lacking. I ordered prescriptions a week in advance recently but was then told by the receptionist that I was not allowed my medication and I had already been told-clearly there was a mix up with another patient because this was not me! BUT no, half way trying to explain it was not me she called another receptionist and they both stood there smirking and refused to listen. So I preceeded to have what turned out to be a panic attack (I thought I was having a heart attack) and they just led me to the exit! Luckily the pharmacy is linked so the pharmacist helped me to breathe and when I did eventually see my Dr, who is absolutely amazing, he didnt know what the fuss was about and gave me my prescription! I was so embarrased by my panic attack though but the next time I went in I was all smiles as I usually am and acted like nothing had happened. But I realy felt disheartened (again) by human nature! I cannot see why everyone and I do mean everyone can't just be nice and profesional while at work. Its not much to ask for and it would make dealing with health care easier and would have saved my dads situation, your husbands situation and our long term suffering as a result. I am not nice all the time, I have bad days and I get tired but I would never ever treat a person in distress badly ever ever ever. I can't comprehend it. 

I do hope you are coping with Covid though but its early days, it lasts a little while so try not to worry and please just drink even if you might be up to eating much. Shout if I can do anything to help. 

Lots of love,

MIGI XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

Drsr Migi

Thank you so much for those words. You are still a great writer with a wonderful way with words. Love to you. My throat is actually a tiny  bit better at least I swallowed tablet on first go lol.xxx

Bettyxx