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

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

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 

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 

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