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 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 Betty,

My daughter and I had ours yesterday, it was fine. The twins have their at school which s really handy. I have words with my son every year over it because he really doesnt like anything like that but I normaly book him in at super drug and pay the £10 for him. Hell go if Ive paid becuse he would feel bad about wasting the money but other than that Ive got no chance! Hes coming up later to try out his suit. I had better go and wake eveyone up for the day or else itll be my fault theyre all late! 

Have a lovely day Betty.

xxxxxxxxxxxxx

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 there ..

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

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

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

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

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

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

Hi Chrissie, 

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

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

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

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

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

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

Hi Billy, 

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

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

I hope you’re ok. Xxxxxxxxxxxxxxxx

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

Take care

Betty xxx   

Hi Betty, 

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

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

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

How are you doing at the moment Betty? 

Xxxxxxxxxxxxxxxxxxxxx

Morning MiGi

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

Betty x 

Hi Betty, 

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

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

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

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

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

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

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

Billy 

Hi Billy,

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

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