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, 

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. 

Hey everyone!

Thank you so much for thinking of me. Im ok. Ive been struggling with what happened at the hospital when dad died so I finally started counselling on Monday at the hospice. My counsellor was so lovely to me. She said I have PTSD and what im having is flash backs. Im relieved to know theres a name for whats been happening to me but Im so angry that Ive ended up with this and Im just hoping we can clear it as soon as possible because its really unpleasant and it takes me by surprise so a few times Ive been scared to go out on my own in case it happens and obviously no body around me will know whats wrong with me so potentially really embarrasing. Especially when I think we all put our armour on before we go out and try to appear relatively strong and in control! I did tell the counselor I wanted it gone quickly so Im booked in next Monday now and Im having a week in between sessions rather than two weeks. 

Positive news though, Ive just started my degree in Psychology and Counseling (The irony!) and its very early days but im really enjoying it. Ive wanted to do it for so long and Im hoping that it will focus me and keep my mind occupied so Im not spending my time thinking about what happened so much. Im not in the best place financially so who knows? After this and Ive managed to get a better job I might still be in the running for a pair of gucci shoes AND the matching handbag-theres hope! Haha. 

All of my children are doing very well, my eldest daughter passed her first year as a student nurse. My son is just gorgeous, he came home for xmas. Hes third year now. The twins are so cute I cant believe how lucky I am. 

I do feel pretty awful to be totally totally honest. I switched my phone off all week becuse I just didnt want to talk but I put it back on this morning although its out the kitchen Im going to mums and not taking it with me. I just want to be in the house really. 

But Ive started going on the sun bed a couple of times every week just to lift my mood and its helping. I havent got a tan but I may end up with one which will be a bonus! 

For me its just like it is for everyone else here. Were all hurt but were all taking things day by day, week by week. Its accepting that things will never be the same but trying to find a new way of living that were ok with I suppose. 

Sending lots of love to you, seeing your messages was so lovely. What a great start to the day youve made it, thank you. I know how how hard it is so please feel these hugs Im sending to you, lots of them! XXXXXXXXXXXXXXXXXXXXXXXXX

Hi Migi, well done seems something going right, thanks for the hugs almost broke my ribs,. If i read it right you're a granny now as well. Congratulations. Hope keep enjoying your course work you need something good to do.. Best wishes..... Xxxxxxx 

Billy 

Hey Billy,

Not a granny yet! I must have mixed my words up, sorry about that but no grandchildren just yet! My eldest two are career focused, not even in relatioships so itll be a long wait for me to be a granny i think. Although having my little twins is lots of fun so Im not complaining! 

Haha, I didnt mean to almost break your ribs but to be honest those wre exactly the strength of hugs Im sending you guys. In my darkest hours you kept me going and I love you for it. I cant help anyone on here at the moment because Im too negative towards cancer. Im sure Ill think of some positives one day but right now it still really sucks and the standard of care and support needs a complete over haul. There are too many people like my dad and [@Brien]‍ husband that are being teated in ways that youd go to prison for if you treated an animal in the same way. Im still so angry and upset.

The healthboard responded to our complaint and got all their dates wrong and refused our request to be sent dads notes so we havent seen dads notes yet but from what we have seen theyve not lookes at the right times and days. They sent me the letter then denied to my advocate they had sent it! i had to take my letter in to her to prove the healthboard had sent it to me and when I did the person my advocate had been speaking to who had denied sending me the letter was the person who had actually signed it! Can you believe it? Its an absolute joke. Im not happy with the response but my advocate lady got a new job at xmas and ive been told by the new advocate that theyre so busy that they cant see me until at least April now to discuss a response to the letter so I feel really helpless and deflated. Id hoped to just get on with it but hey. I just hope theyre not phobbing me of and making me wait until April so that I miss some kind of dead line where they can say its too late or something. I just dont know. Im struggling to focus too because its all so much. But my motheris destroyed. Absolutely gone. She cant handle whart she saw either so I have to see this through. Its Life with a capital L!! 

More hugs for you but be careful, we dont want you ended up in the hospital, you never know what they might do to you.

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Hey Migi just a thought could citizens advice help, might give you a few pointers, or even recommend someone who will do it quicker. Thanks i was very careful with these last hugs. Bet sometimes you could thump something or someone. Good luck......... 

Billy 

Hi there hunny ..

Not only does cancer suck .. so does the system ... I'm sure you or your mum has the law on your side for right to see all documents ... if you were rich and could afford a good solicitor,  it would be a different story ... just to stop anyone else going through what your family have would be amazing ...

Sending you a vertual hug as always... Chrissie xx

Hey Chrissie!

Thank you for my hug, really need them at the moment. I wish I could afford a solicitor! My boy is half way through a law degree but no where near qualified and its not going to be his thing anyway. Ive been wracking my brains for ideas on how i could get a solicitor on this but its just not possible. Im going to get on it on Monday and if the advocate cant do anytbig before April I think Ill just do it myself somehow. I just dont want to get it wrong becuse its so important. 

Its not exactly the same thing but my daughters friend had a traumatic experience on her placement a couple of weeks ago. (At the same hospital dad died at although not the same ward She was left on her own on the ward while all the nurses went to hand over and al of a sudden a patients daughter came out hysterical crying that her dad had died. There was nobody there to help and all she could do was comfort the daughter until the nurses came back. Its wrong. To me its unforgiveable but the more I hear the more my heart sinks. 

One of the things that Im struggling with is that ive been told in no uncertain terms by the coroner that my dad didnt commit suicide but he said that he "depleted himself of oxygen which accelerated and changed the timing of his death." its just a totally dispespectful play on words as if its some kind of joke. So many people have asked me how dad died and I just havent known what to say so Ive ended up saying "well, he was terminally ill and then he found himself in a position where he felt he had no choice but to sort of kind of in a way sort of give up." Its just ridiculous and confusing. Im really hurt too that the nurse said she was there with us when dad took his mask off. The healthboard said they can only go by what the nurse told them but how sick is it to lie about something like that? 

Ive written another letter in response and I sent it to the advocate before xmas but I think Ill go through it all myself after the weekend and just send it. Theyve invited us for a meeting but I wanted the notes first and theyve also sent me a form to fill in listing the questions I want answers to at the meeting! So they want to know in advance what Im going to ask so they can rush about and cover up and Im not prepared to attend the meeting on those terms.

Absolute nightmare but as my dad used to say "We'll get there-wherever 'there' is."

I hope youre ok though, we just have to keep going!!

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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. 

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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. 

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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  

Hi Migi. 

Hope your still OK.

Been struggling with my darling Brenda last few weeks she's more like a zombie sits there staring in space, no talk no movement hardly. 

A real good friend asked what meds she was on and straight away told me to stop one of them. (she is medicaly trained).

Next morning she's taking notice, talking really good and started to feed herself, she's been on these tablets for over 10 years now she should never have been on them there for schizophrenia which bren hasn't had, i got in touch with brens nurse told her she was quite happy I'd done it, they are now going through brens meds to see what else she doesn't kneed

But i think it's a devil when you have to take someone off medication to make them well. .,

It's been recommended we sue to make sure it doesn't happen to others brens thinking about it. Really it was her it happened to. 

It just makes you so mad with these experts getting things wrong and someone else putting it right.

Hope you don't mind me venting a bit to you but i know you've been there done that. 

Hope all is well in your household. 

Love..... Billy xxx