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 there ..

Oh my, don't be so hard on your self ... we all have horrible days, for lots of different reasons .. my Lord, I couldn't go through what you have .. I can handle the hard days for me, but when someone I love is having a bad time, it effects me far more ...

You have been through a long drawn out nightmare .. no one could come through what you have, and be o.k .. so once you say to yourself, you have every right to be angry / sad and want to vent at the world and how unfare it's been, you do it .. when I felt like you, I went out in the car, somewhere quiet... thought it out .. and I screamed .. and screamed ... it didn't fix anything, but I felt so much better ... I carried that scream around with me for years after loosing mum ... 

It's funny, once you are kinder to yourself, and tell yourself it's o.k ... it takes a little of the pressure off ...you don't realise just how much you've been through .. your not super human, just human ...  

Now I learned a little trick that helps when you can only think of the saddest times .. you remember the best memory you had of dad, and relive it slowly .. remember what was said, and how it made you feel .. over and over till it pushes those bad memories out ...

Now you think, your dad wasn't cancer, he was the man who helped you walk, watched you go off to school .. grow into a teenager... an saw you change from a girl to a woman .. and that's how he'd want you to remember him .. that's how I want my family to remember me .. not the cancer ... coz cancer wants you to replace those loving wonderful memories to just those cancer caused .. coz then it can claim you as it's victim too .. don't let it .. stick two fingers up to it ... and to those axxx holes who made everything so crule .. they will hurt you all over again every time you think of them, try to let it go .. not for them, for you... nothing more can hurt your daddy now .. he's safely tucked up in your hearts .. 

You did good ... you did more then you give yourself credit for, and I for one are so proud of you ... sending a big vertual hug... Chrissie  

Hi Chrissie, 

Thank you for such a lovely message. I just feel in limbo. I feel like I should be doing something but I don’t know what to do.

I’ve spent the last year focusing on all the stuff that’s been going on and it’s taken up all of our days and nights. There’s been no time to think or anything and now I feel like I’m thinking too much.

Even after he died there was trying to get the coroner to listen, then getting a complaint sent off, then trying to get his body released and then his funeral. It’s been something something something but now nothing.

I saw on the news earlier where some details of a report coming out into a maternity unit in England somewhere has been leaked. They mentioned nurses being unkind and uncaring and failing to care for mothers and babies properly which resulted in deaths of mums, babies and some disabilities that all could have been avoided by the sound of it (I only caught a little bit of it).My dad’s not the only person that’s been failed so badly by the NHS it’s happening all over the place. I don’t know, I found that really upsetting today. Maybe that’s partly why I feel so rubbish tonight. I couldn’t live with myself. I couldn’t be a part of letting that happen. I can’t believe my own dad will end up as a “patients story” as soon as I write it. You hear about these things but you never think it will happen to you. I just have this awful feeling that what happened to my dad happens a lot. I just think it’s so hush hush that we don’t get to hear about it. 

But anyway, I’m ok I’m just letting off steam. I’ve had a bubble bath and coloured my hair, my eldest daughter is off tomorrow (she’s on a placement at the hospital he died at but luckily not on the same ward) so we’re going to hopefully get the car from the garage tomorrow and go out for an hour. I can’t believe how depressing I sound, do NOT let me depress you guys because honestly I’ll be ok in the morning after a sleep. It’s just a difficult week that’s all. Sending hugs and love to Chrissie and everyone here, hugs do help, even virtual ones. Xxxxxxxxxxxxxxxxxxxxxxx

Hi migi, hope you got the car back (and it didn't cost to much) and you went for a good run with your daughter and got some fresh air hopefully it'll help, chrissie is a lot better with words than i ever will be so I can but hope things start to improve, back to a new normal for you, hope you're mum is settling down OK, don't forget you've plenty of friends on here if you want to talk or just rant and let off steam there'll always be someone to talk to, you did a great job just everyone else was against you well done. God bless.... Billy 

Hi Billy, 

You are brilliant with words, don’t worry about that. And you’re been super supportive to me and I really appreciate it. Thank you. 

I’m feeling a lot better today. My mood lifted a bit yesterday. Thank fully. 

I hope you’re ok. Xxxxxxxxxxxxxxxx

You have been through a horrendous time and the people who are paid to help you have done nothing. I can understand how frustrating this whole time has been for you and your family. I really hope things start turning around the right way for you from now on. Meanwhile be kind to yourself you deserve it. Lots of love to you and yours. 

Take care

Betty xxx   

Hi Betty, 

Thank you. When I look back it doesn’t seem real. It wasn’t even a year ago yet that dad got diagnosed and it’s just been living and breathing cancer since. Everything we all went through and now nothing. It feels like we’ve been through hell and back. We’re waiting for the health board to respond to our complaint but I know it’ll just be them trying to dismiss it and cover up. 

Im in the same position as you now,knowing that the most awful things happened and having to come to terms with it all. You’re so busy at the time you don’t have time to stop and think so it feels like last week I really started thinking. I feel a lot better now. I’m getting lots of love and support from everyone I know. I am genuinely lucky in that sense. I have three daughters and an older son so you can imagine what it’s like here, just lovely. 

We are all going to Blue stone I think it’s called next Friday for a family weekend away, we’re all going and I can’t wait! It’s going to be nice to treat the girls and have some family time together all of us. I haven’t told the girls yet, I’m not going to until we’re in the car! 

How are you doing at the moment Betty? 

Xxxxxxxxxxxxxxxxxxxxx

Morning MiGi

I am wishing you the the best time possible next weekend as is everyone on here I know. You all deserve it. I'm doing Ok going for a few tests at the hospital my husband was treated so badly at, looking forward to that as you can imagine lol. Meanwhile enjoy your lovely family, Thinking of you and sending you hugs and kisses. xxxxxxxxxx

Betty x 

Hi Betty, 

Thank you! I’m meeting my cousin this evening to make our final arrangements for the weekend. He’s also insisted I join Salsa class so I’ve been doing that the last two weeks to lift my spirits. I’ve met some nice people and it’s a way to keep fit. 

I know exactly how you feel about going anywhere near that hospital. The hospital my dad died in is right next to me, five minutes from our house. I drive past it every day on the way to mums. I’m going there now to drop my daughter who is on a placement there. I always felt reassured that the hospital was so close but now it gives me chills. They have always been good with my children but I was there recently with one of my girls. The nurse was talking to me and I found myself thinking “I want to tryst you but I don’t believe what you’re telling me, I’ll take her home and hope for the best.” It’s awful. The nurse wS fab too I have just completely lost my faith and confidence in them and whereas before if anything happened I’d rush to go there now I cannot think of a worse place to be. It also stirs up a lot of memories when I walk in because I can see the ward where dad died when I look up as I walk through the main entrance. Not his exact room but it’s a choice of two or three because I remember looking down out of the window when he was in there at the people coming and going. 

I bet you feel all sorts of emotions and judging by my own its completely normal and I’m not sure it will ever stop just get less painful hopefully. 

It was mums birthday yesterday. We had a family tea party at her house, all of the children were there abscess it was lovely. She was quite emotional at times and I felt myself filling up but I was in charge of making the food so I was pretty focused. Just so weird having a party and cooking in dad’s kitchen when he’s not there. There was a lot of laughter and I almost felt guilty for laughing but I know dad loved the sounds of us all messing about and having a laugh and mum finally asked me to take his ashes to her yesterday so dad Was actually there too. 

I really hope you’re ok Betty, you don’t say what sort of tests you’re having but please message me if I can help even if it’s just being there to talk to you. 

Fingers crossed we all find the strength to deal with these horrible things, I honestly feel like we do give each other strength on here. Sending love and kisses back Betty. I’m picking up my car today I’m actually excited! I hope you have a nice day too. Xxxxxxxxxxx

Hi Migi haven't heard from you lately, hoping all OK, i can understand you not wanting to use forum with all problems you had. Just call it nosy if you want, just like to know everything is OK. I do worry about people i get to know and like (friends), as i said before hope things are going well.......

Billy 

Hi Billy,

I remember after my husband died I just could'nt face going on here for a while. Not sure why but just could not face it for a while. Think I wanted to be alone as much as possible. I do hope Migi is Ok, Sending her my love. 

Hi Billy,

I remember after my husband died I just could'nt face going on here for a while. Not sure why but just could not face it for a while. Think I wanted to be alone as much as possible. I do hope Migi is Ok, Sending her my love. 

Hi Betty,

Thank you very much for thining of me. Youre right I just havent been able to face much lately. Im ok though just trying to get on with it as best I can. Im finding that I want to be on my own with my children. Ive been doing various things to try to keep myself ok but its all gone out the window the last couple of weeks but Im in counseling now and hopefully this will make a difference. Its heart breaking. I dont have to tell you how heart breaking this is. Let us know how youre getting on, how are you coping with everything now? I have a feeling this sort of thing stays with you I might be wrong but it doesnt feel like the sort of thing that can be gotten over in a hurry if at all. Big hugs for you Betty. I really hope that you are somehow staying strong. 

XXXXXXXXXXXXXXXXXXXX

Morning Migi.

Thinking of you. Unfortunately your are so right about it staying with me. I wish I could think of the good times etc that we did have for years, but I see my poor skeletal husband in absolute agony, the one thing that he was worried about happening and it did. The atmosphere in the very noisy ward, the lack of treatment and care was appalling. To this day I am so thankful he decided to discharge himself and come home, however this just meant he had given up any glimmer of hope. It is now just over a year I have had counselling, it has helped a little but not very much. I wish I could forget those awful times, so many of them in the hospital, I do try but they are too awful and still too strong. Sorry to be such a misery today, I find it helps being with people also I understand its OK to laugh and not feel guilty, but with I did not have those awful images.

Take care of yourself and lovely family xxx

Hi Betty,

Dont worry, I know, my heart breaks for you because its so painful and should never have happened. They dont think of the impact on the loved ones left behind and the loved ones having to deal with their disgraceful lack of care at the time. 

Were not trained to deal with seeing those things and to not be supported at such a crucial time is bound to leave us with scars that hopefully but not definitely will heal one day. Im suffering the same as you in the sense that its the images the sounds etc of what happened in the end that I cant seem to stop seeing and when it happens sometimes its so intense i feel like Im still there. 

The counselor told me its flash backs, I had thought it was anxiety attacks but she said its PTSD. Im wondering if you might have the same thing? Im really lucky with my counselor she booked me striaght back in for this monday coming and she really understood what I was saying but I know its not always the case. Is it worth you possibly trying again? I am so strong and independent Betty but Ive found it a bit embarrasing how this has completely knocked me off my feet but it is such a massive thing for us so not surprising. I hate thinking of you or anyone struggling like we are with this, I wish there was an easy answer to it I really do. It makes me a. bit angry all of this for no reason, it could so easily have been prevented and I think thats the hardest part, knowing that if people had listened to us we wouldnt be suffering like this now. 

Im off to see my mum, she wants to take my girls to the park for a while so I will catch up with you later. Big hugs Betty and lots of love. 

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This article is about the English NHS but it gives an insight into why so many people feel forced to sue the NHS as it's often the only way Trusts can be compelled to release information. 

www.bbc.co.uk/.../health-51180944

I totally understand it now I’m in that position. Lots of my family have worked for the NHS as nurses, managers, as receptionists, all sorts and I’d never in a million years have thought I’d ever be someone that would even consider suing the NHS. My dad had a total freak out on me years ago because he had meningitis and needed a brain scan but they blatantly said that it was too costly and couldn’t be done. I rang the consultant and told him If money was the issue I was coming in with my credit card and was going to pay for the scan and wanted it done immediately. (I had a good job back then) By the time I got there which was within the hour they had already booked dad in! But dad wasn’t happy because he felt he’d bypassed other needy people just because I’d flashed my cash so to speak and the whole idea behind thr NHS was for It to be free at the point of need so he objected on principal to what I did so we had a big argument over it. But sometimes you have to do things you don’t want to do and if suing them is the only way that we will get an apology and an explanation that’s how it’s going to have to be. In our case it’s blatant what they’ve done and no amount of compensation will ever put it right. What would put it right, right now is an apology and an explanation and the nurse being fired. And a promise that this will not happen again to anyone else. That would stop me taking this further and all they’d lose is a bad (dangerous) nurse which is no loss to them anyway anyway but seeing as they don’t want to do that I HAVE to take it as far as I can even though it potentially could cost them a lot of money. They don’t seem concerned that they have a dangerous nurse there and don’t seem concerned about the money either. But for me suing looks like in order to get what I want it’s unfortunately what I might have to do. 

Thank you MiGi, for your lovely thoughtful reply.  sometimes it feels after all the anguish we have been through your family as well as mine, that its amazing we are functioning at all. I just feel mostly disgusted with the NHS and the blatent cover ups. In one incident  where my husband and I complained the hospital even had a police report done. However despite the written statement of a witness, another patient who happened to be a hospital chaplain, it still ended up being dropped because the hospital hierarchy decided it was my husbands word against the nurse's. As though a man who knew he was dying with cancer has the time and energy to make statements against a nurse, is going to lie. And a chaplain was also lying.  It was just another slap in the face. Its difficult to fine words to describe how disgusted I am with such a system. I know how we need it but it needs more then a shaking up. I lived and worked in the USA for over 20 years,  and I do appreciate it cannot be the same as private health care, but he staff and managers should still do a decent job  and treat the patients with the dignity and respect they deserve. That does not cost money.  Sorry for the rant. Thanks again MiGi it just makes me so angry its still happening.  xx

I agree I feel awful but everyone, my family, friends and friends here keep reminding how well I am actually doing and Ive been able to step back and see things more objectively as a result. 

You are so right that after all of this its a wonder we are coping at all. But we are. Sometimes it doesnt feel like it and sometimes its so so hard and sad and absolutely crushing but we are still finding a way through and Im trying to see that as a step in the right direction. 

I agree its apalling that not only do you endure this horific experience that has hurt so much and changed your life for ever at the hands of so called profesionals but then they deny it ever happened!

Initially I was told to complain, by the site manager at the time by the ward sister that day (she telephoned me herself and had the complaints form ready on reception for me-I didnt ask for this or for her to call me!) But disgraceful then that when I did complain and they did their (botched) investigtion that they say it hadnt happened at all in the way I said!( even though when the sister called me hours after dad had died and told me to please write down everything that had happened before I went to sleep because Id forget, I did so with my daughter in detail and still have these notes they formed the basis of my complaint so it was 100% accurate).

So then you have to deal with the fact that not only did this happen but its now being denied and the struggle to either accept it or prove it begins. On top of the pain and suffering thats already there as a result of whats happened. Its a sick joke almost like a black comedy sometimes. 

They know, they do. They know the truth and they know exactly what theyve done to us. My dads notes (theyve ben referred to by the consultants in the coroners report so I know little bits) clearly show he was left without painkillers in the hours leading up to his death but he was prescribed to have them every hour and uo until the night shift took over and the problem statred was having them every hour. Its common sense then that if you suddenly stop pain relief for a patient in that state that its not going to be pleasant. But aparently not! Even with the coroner he said it wasnt suicide but dad "deliberately depleted himself of oxygen" which "accelerated and changed the timing of his death" Well what is that then? Its an absolutely atrocious and vile play on words because they dont want to admit the truth. 

Ive heard so many awful things about the system lately and like you said what weve been through is nothing to do with money. Its about respect and dignity of the patient and thier family. Not much to ask. Im disgusted with it too, I still cant quite believe it. I wish I knew when we were going to start feeling better. But whatever you think whatever you feel I understand I really do. Love and hugs.

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Hi Migi, hope you don't mind me sticking my nose in was wondering how things are going with your new job, and if any thing got sorted with your complaint. I know you've got alot on your mind so no rush. Just hoping things are getting sorted.

I had a bit of good news from oncologist, had another bone scan (I'll never get usto being injected with radiation) my cancer is still there but hasn't spread anywhere else. Yippee i think anyway..

Bit of bad news my darling wife has been diagnosed with Alzheimers and parkinsons but two different specialists gave us the results so didn't know if there both right or if one of them is wrong. Hope to find out soon. 

Hope you are keeping well thinking of you. Love... Billy xxx 

Hey Billy,

Typical, not even an acurate diagnosis. How can two doctors give two different diagnosis? You would think theyd talk first to decide what to tell their patient. Then again........ Unbelievable. I hope youre wife is ok Billy. Im so happy to hear that you had good results though!! Its bittersweet though isnt it when your poor wife has just had this news. 

Im ok, Ive had a really nasty virus the past two weeks, I still havent recovered but at least Im out of bed and back to it a bit, Its hit me like a train! 

No real news though. My advocate is still refusing to respond to my emails. My mum is in pieces. 

I approached another solicitor but they couldnt take on my case because there isnt enough money in it. The cost of fighting it outweighs the return so thats a no go. 

And we still havent managed to get my dads hospital notes from the hospital yet. 

We still owe the Funeral directors £500 so theyve written to mum to tell her theyre taking her to the small claims court. Im so annoyed. Im the one who told her not to pay them anymore money. They had over £2500 from mum and I said over my own dead body will she walk in there after the mess they made of dads funeral and pay any more but even thats become an argument over money. I wouldnt be surprised if they take us to court and force us to pay either.

The world has gone mad. I just dont want to talk about money anymore. But then Im not letting my mum go in there and hand over any more and I dont want any compensation, I want an apology! Its ridiculous. 

Ive started uni and Im throwing myself into it to distract me because Im beyond devastated. I saw the doctor a couple of weeks ago and hes given me sleeping tablets and theyve helped. The panic and reliving it all just got too much in the end but Im much better now. Really I need to get a grip on it all again and start fighting, I just ran out of strength for a while I think. 

Its so lovely to hear from you though. 

Take care, lots of love and hugs. 

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Hi there ...

So lovely to hear from you .. shame your still getting nowhere .. but it seems only the rich get justice ... life's a bummer .. here's hoping your uni course goes well ..

Life's sent me some bazookas... sis with dementure is at end of life now .. and the only thing she has now is pain ... the care home should be called the care(less) home ... it's heartbraking .. to see someone close like that ... it's really not fare ...

And we were going to Florida with my son and family ... last thing on my bucket list... just the day before my oldest granddaughter 17 ( well 18 today ) ... got taken to hospital and diagnosed with acute myeloid leukaemia  so instead of mickey mouse shes just had her first round of chemo.... and to say im so proud of her is an understatement...now the holiday insurance is trying not to pay out ...

I'm just saying this so you know your not alone .. seems fate has it in for us at times .. just want a break from bad news ... but fingers crossed put your heart into your course ... and I want you to pass with flying colours ... sending a vertual hug to you and your mum ... Chrissie