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 migi I'm so so sorry for all the(problems)you and your family have been having all the way through, thars loads of things me and plenty of others would like to say but we'd probably get banned from the forum, other people have made a mistake and you family are paying for it, it's completely mad, i can but hope things start going smoothly now you certainly need things to run better now hope you're looking after yourself, hope you're mum is well, best wishes... Billy 

Hey Billy, 

Im sorry for the delay in replying. It’s been two months now and I’m struggling to keep my mood lifted. It’s been a bit hard this week, I can hardly stop thinking about his last hours and what I saw. I’ve been trying really hard to not think about it and to push it away when it comes into my mind but it’s always in my mind and it’s just been a bit overwhelming this week. I’ve been in the house mostly because my little girl is poorly and my car is in the garage so that hasn’t helped but I feel so low. They don’t think about the impact all this horribleness has on the people left behind. I’m really strong but I feel awful at the minute. I keep telling myself to get on with it and not wallow because it does no good but its not easy the last few days. However, from reading what everyone else is going through here it seems like it’s normal to feel like this but it’s horrible. I am ok though!! It’ll all be fine. I hope everyone is ok here too. I don’t think this weather helps. It’s freezing! Xxxxxxxxxx

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 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.

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. 

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