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

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.

XXXXXXXXXXXXXXXXXXXXXXXXX

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!!

XXXXXXXXXXXXXXXXXX

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. 

Hey Billy, 

Not long after you posted [@davek]‍ Sent me some info to help find a solicitor so I’m going to give them a call on Monday morning and go from there, I’m going to keep everyone updated so hopefully I might get somewhere with this. Fingers crossed. 

Im not happy about it at all but I’m trying not to be angry. I’m throwing myself into studying and really trying to keep as focused as possible. Im struggling but it’s with very low mood and it’s more feeling like I just don’t want to go out. But today I feel much better than yesterday better than this morning even so it’s literally an hour by hour, day by day thing. I get angry when I see mum crying and breaking her heart. She still blames herself and she did nothing to deserve this life sentence she’s ended up with. It’s so unfair that in her 60s with the huge  problems she’s already got that she has to live with this but she’s finding the counseling helpful she says. And she’s trying so hard. We can all see it and I’m really proud of her. But how I didn’t physically attack the nurse at the time I’ll never know. And maybe as part of my grief I will start to feel angry. I just don’t know how to feel at the moment. 

Do you know it’s 4 months since he died now? I can’t believe it. Mum said it seems like such a long time ago but I feel like it was last week. 

I’m doing all the things I do to make myself feel better like I said before pampering away! Face mask, bubble bath, painting my nails, it really helps. 

How are you doing anyway? I’m always going on about my own issues and once I start writing I don’t stop you may have noticed!! 

Xxxxxxxx

Hey Billy, 

Not long after you posted [@davek]‍ Sent me some info to help find a solicitor so I’m going to give them a call on Monday morning and go from there, I’m going to keep everyone updated so hopefully I might get somewhere with this. Fingers crossed. 

Im not happy about it at all but I’m trying not to be angry. I’m throwing myself into studying and really trying to keep as focused as possible. Im struggling but it’s with very low mood and it’s more feeling like I just don’t want to go out. But today I feel much better than yesterday better than this morning even so it’s literally an hour by hour, day by day thing. I get angry when I see mum crying and breaking her heart. She still blames herself and she did nothing to deserve this life sentence she’s ended up with. It’s so unfair that in her 60s with the huge  problems she’s already got that she has to live with this but she’s finding the counseling helpful she says. And she’s trying so hard. We can all see it and I’m really proud of her. But how I didn’t physically attack the nurse at the time I’ll never know. And maybe as part of my grief I will start to feel angry. I just don’t know how to feel at the moment. 

Do you know it’s 4 months since he died now? I can’t believe it. Mum said it seems like such a long time ago but I feel like it was last week. 

I’m doing all the things I do to make myself feel better like I said before pampering away! Face mask, bubble bath, painting my nails, it really helps. 

How are you doing anyway? I’m always going on about my own issues and once I start writing I don’t stop you may have noticed!! 

Xxxxxxxx

Hi Migi don't worry about me, I'm as good as can be, i always think coming on forum as a way to rant let out some of the anger it definitely helps. I've let go sometimes and do a good letter then realised my language is rather bad and deleted it, but even that helps. Hope your new information from davik really helps. Good luck and best wishes............. Billy xxxxxxx