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

Ok, Is everybody ready for the latest installment of our hellish journey? I can’t believe I am writing this... 

You know how I was talking about my dad’s funeral arrangements earlier? Well here we go......

4.30 this afternoon the funeral director called my mum and asked her to pop round to his office to talk. 

She came back 20 minutes later absolutely broken. 

Hes been trying to get my dad’s body into “care” now numerous times and the hospital keep refusing to release dad’s body because the doctors aren’t signing the paperwork. (We didn’t know any of this until 4.30 today). 

The paperwork had to be in place by this evening but despite this they still haven’t done it and will not release him. 

So the funeral director has cancelled my dad’s funeral. We can no longer have the chapel we wanted as we had the last date before it closes for winter and that’s it. 

I tried calling the hospital but everyone had left for the day already so I have no idea whats happened. No body from the hospital has contacted us. We are just shocked and confused. I honestly just don’t know what to say. Xxxxxxxxxxxxxxx

Hey Betty, how are you doing? I took your advice and I called my doctor. They didn’t have any appointments but he’s calling me on Friday so hopefully I’ll be able to get something for it. I can’t talk properly now my throat has gone really scratchy. I think you’re right about picking it up  from the ward, I’m run down at the moment too I haven’t been eating much and what I have had hasn’t been too healthy-lots of chocolate as I’m rushing about pretty much. I’m cooking lovely things for mum but you know how when you’ve cooked you don’t want to eat? I always get like that so she’s doing ok but I just don’t feel like eating myself. Did you read my latest installment? I can’t believe it Betty. I was trying to think positively about the funeral and I was trying to focus on making it as lovely as possible for my girls really because they’re so little but even that’s all gone wrong now. If someone told me this whole story I think I’d have trouble believing them you know its been so awful. 

How are you feeling at the moment? Reading my experiences must bring things back for you and it’s so hard. But lots of love and hugs for you. Xxxxxxxxx

Thank  you for thinking of me and taking the trouble to write,  I know it sound so ridiculous but as that actually happened to Paul and Alan, my son's I was just hoping it won't happen to you.  When it happened to them I went to my GP who actually gave me antibiotics, so I suppose I was lucky, lol nothing about any of this is lucky but you know what I mean.  I think stress makes us all vunerable to all sorts of stuff and it seems to happen when every one else think its all over, so just take good care of yourself.

Betty xxx

It does bring it back for me, I actually could not even look on here for a while, it's fine if it happens to you, just do what you need to keep yourself going, a day at a time seems laughable but it's what you do. xx Hugs and good thoughts to you.

Hi migi just noticed you've got more problems caused by the hospital it's unbelievable after everything was arranged for the funeral, if you're feeling rough you want to try a drop in clinic it'll be quicker than Dr especially if you have picked up something, remember your going to be run down what you've been doing lately and not eating properly Fridays a way off especially if it's only a phone call, not to see you, or try A&E, hope you get sorted soon best wishes. Billy x.

P.s were all here rooting for you, but get well soon, hope your mum is OK with all the hassle. Again best wishes.. You need them.. 

Hi Betty, 

You’re right my friend I’ve mentioned before who had cancer in her thirties has been saying it to me. She has a lot of stress herself so I’ve been saying it to her, you know, take care, look after yourself too. Yesterday she fell over in the street and grazed herself to pieces. She texted me to tell me and said that’s enough for today, she was putting her feet up and her husband was bringing her a cup of tea. They say stress is a killer and it’s easy to see why. I think a lot of people THINK they have stress but on here I think we all know what real stress is. I did ear last night afterwards but you feel a bit numb and not yourself so it’s hard to think about what you need because like you said you’re just taking it day by day hour by hour. I understand you not feeling able to read things on here for a while too-there were times in the night where normally I’d read and offer a Bit of advice to people but I couldn’t. I just Felt too empty and numb. I don’t know how you are coping with what happened, we are struggling it’s horrible. It’s bad enough that your husband and my dad were in agony and treated so badly but they’re at peace now. But for us you and us it feels like we will never be at peace because we will always know what happened and how they suffered. It’s awful. Families shouldn’t be put through that pain. But it is one day at a time and the sun is shining here. What’s it like with you? I’ve already had a phone call from the hospital they’re trying to release dad’s body. They’re going to call the crem and try to get the funeral back on for Monday but Mum’s been up all night in tears. Sending lots of love and big hugs to you and thank you for mine. Xxxxxxxxxxxxxxxxx

Hope your doing OK and they will release your Dads body. My husbands funeral was delayed as the GP was waiting for reason for death from the hospital. No one it seems wanted to take responsibility, possibly the same with your Dad. It is awful the similarities and imagine how much is going on that we have no idea about. It truly is shameful. You are doing good for others by just sharing. I cannot find the words to say how wrong and inhumane it is that people who are suffering enough should   have to do so in awful circumstances as well. You are right try as I can to forget it I never will. I am definately getting used to living alone, still don't like the dark , but can laugh at things again. Just wanted to let you and your Mum know its an old cliche but time will help you. I will be thinking of you next Monday, Love to you and your family and well done, You are helping others as well. xx

Hi Betty, I think mums doing better than she would be because she’s here with us and our house is really busy. When you have small children it helps to keep some joy and normality going. You can be crying one second then one of them will do or say something and you end up in fits of laughter. I think if mum decides to go home it will be hard for her like it is for you because it’s then that you start learning to live alone without your best friend. I’ve told mum we will never get over it or forget it but in time especially if we get answers from our complaint that we will find a new way to live. It won’t be the same, it will be different but we will still eventually be able to enjoy things again and be more at peace in ourselves. We’re a long way off that and so are you but each day  that goes by is a day of showing we can cope and we can live through it. Not that any of us should have to. The hospital are trying to release dad’s body ar the moment And are physically driving the paperwork to the crem now then they are going to sort out the funeral directors for me and hopefully get the funeral back on for Monday. It’s shambolic. I do have great support from the senior bereavement nurse though, she is fighting my corner with me. I’m supposed to be having a flu jab today Betty but I feel like I’ve already got the flu! If you haven’t had yours yet it might be worth booking it. The last thing you need is flu on top of all your heart ache. Xxxxxxxxxxx

Thanks for the reminder I must book the flu jab. My sons had pneumonia, not sure if I said that in the post. Yes Children are brilliant, my 7 year old grandson visits me every weekend, they definately keep your feet on the ground and  are great at making us feel better, unintentionally most of the time.  Hard work too though so try and take it easy. xxx

Hi migi glad you've got someone fighting on your side it'll sertenley help, hope everything gets sorted so Monday is the day but make sure you look after yourself best wishes.. Billy x

Hi migi glad you've got someone fighting on your side it'll sertenley help, hope everything gets sorted so Monday is the day but make sure you look after yourself best wishes.. Billy x

Hi everyone,

Its all sorted out we cn have the funeral Monday. The doctors just hadnt had time to fill in the paper work but they did it and the bereavement nurse drove it to the crem herself for me and called the funeral directors to tell them the funeral was back on. What a fuss. But Im so happy we can stick to the original plan and have it on Monday. 

The minister came out to see us again yesterday. I have this awful cold so I was feeling really sorry for myself and kept bursting into tears every five minutes but mum was really strong and asking all the right questions. My dad is at the funeral home now so at least hes out of the hospital but they moved him yesterday and it really unsettled me. I cant explain why I just feel like he doesnt want to be moved around. Ill be happy once his ashes are in the urn and on mums sideboard which is what he wanted so that he could still be there with us all. 

My letter of complaint is almost done. The advocate lady sent me a copy and I only had to ask her to change two little things so shes doing that, then shell send me a draft copy. If Im happy ith it (which i will be because shes done a good job) then she will send it off probably Tuesday she said. The health board have 30 days to respond then and shes asked for us to have my dads notes too which will be interesting.

I dont think Ive got any other news. Its just a case of getting through Monday now.

I hope everything is ok here with you guys. Hugs and love to you. xxxxxxxxxxxxxxxx

Hi migi glad to hear all arranged for Monday, hope it is only a cold you've got amount of running about you've been doing your probably run down be careful, hope everything goes well for you and your family next few days days, you really nead a rest anyway best wishes for Monday... Billy 

Hey Billy,

I know Im absolutely exhausted. I cant sleep though. Ive been like it for months . I have a telephone appointment with my doctor today so hopefully he will do something about my cold Im also going to tell him about my lack of sleep. Its stress. Im just not able to switch off. I sleep for a few hours then Im wide awake. Like now, Ive been uo since about 4am and Im so tired but if I lay down Ill just lay there annoyed that Im awake!! 

Are you ok? How is everthing?

xxxxxxx

Hi migi bren nearly right now had a bit of good news, years ago bren had cancer on her top lip it started like a cold saw then changed. Any way they cut it out, other month a sort of blister came right over the scar went to Dr he wasn't sure anyway we'd took her to specialist it wasn't cancer a big relief for us both, I've got new oncologist he's sending me for pet scan he wants to check my cancer isn't coming out other places (not a nice thought) I know it's coming back slowly, but he's not to bothered, again hope all goes well from now on... Billy xxx 

Thank you for taking the time to write and please keep us updated. It seems to me everyone here is thinking about you and wishing you well at this awful time. The counselling helps a little,and the sleep problem will be helped a little by sleeping pills but the Dr's don't like prescribing them  for long. I know that is because they are addictive, but a good nights sleep natural or not does help a little.  Take all the help you can get for now, also your Mum. Sending love and hugs to you and your family xx

Betty

Hello everyone, 

I hope everyone is ok here. I’m awake early and thought I’d say hi and tell you a bit about what’s been happening with us. 

We had dad’s funeral. It was on the 21st October. 

Obviously it didn’t go to plan-again I should have known it wouldn’t. The arrangements were really simple. We wanted the service at our local chapel and for my nan and aunt to meet a funeral director there half an hour before we arrived so that they could “decorate” with flowers, candles etc that we had bought for dad to make the chapel more homely. Then we were going to the crematorium for the comital. We met with the speaker and  gave him all the info about dad and had a copy of the CD to confirm the music etc....all was good. 

But then on the day we arrived at the chapel with dad only to find all the guests standing outside in the cold. It turned out the lady with the keys for the chapel had “forgotten” that there was a funeral and they were still trying to get hold of her. So we all continued to wait until apparently 11.15 so we’re half an hour late starting. 

When she arrived with the keys the funeral directors we’re panicking running in and out of the chapel telling me that we couldn’t have this music or that music and that we could no longer go to the crem for the comital as we had missed our slot. 

Unbelievable. So we finally got inside (both nans almost dying themselves from hypothermia by then) and then the speaker (recommended and booked by the funeral directors) started. He got my sons name wrong, then got my dad’s date of birth wrong. He said 1952 instead of 1957 and as I went to tell him he started telling news stories he’d researched from 1952. I couldn’t believe it. Everyone noticed obviously and i just switched off he was red in the face and stuttering. Awful. Embarrassing. 

He announced to the guests that they were no longer invited to attend the crem and they did the comital at the chapel and it just didn’t flow. Outside after the service mum and I were told that we were unable to accompany dad To the crem which we point blank said was not happening. So they let us go. When we got there we walked in and the man asked us what music we wanted. Bearing in mind this was all booked and we’d had a copy of the cd confirming music. We told him and he said he didn’t have it! So we picked something else. They wheeled dad’s coffin in which mum had said when booking she did not want the trolley used but the family members carrying dad weren’t there as they weren’t  Allowed. Some elderly family members were waiting arc the crem for us all to arrive as they weren’t well enough to do the full day. They put dad’s coffin on the shelf thing and walked out. Mum and I just stood there not knowing what to do then when the song finished they came back into get us and that was it. 

It was a mess. 

They then didn’t bring dad’s ashes within a few days like they promised. 9 days later they sent mum a bill. No apology, just the bill. I made a complaint then the next day they brought dad’s ashes but the funeral director put them on the floor and started going on at mum about the fact that we had complained! She was in floods of tears. It was shocking. Mum has paid £1200 of the bill already but there’s still 2400 outstanding. They’ve offered her £180 discount but it’s not the point. I’m fuming. [@davek]‍ has sent me a guide to look through which I’m doing now but it just made a difficult day more stressful as you can imagine. Xxxxxxxxxxx

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