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 Chrissie, we have and we have a nurse come from the hospice once a week or fortnight to check on dad but the feeling is that if he’s adamant he wants to stay at home they’re limited as to what they can do. They want to take him in, they’ve said it would be much better for him because they have trained people who could look after him around the clock and they’ve said Mum could stay there with him. So all the discussions are difficult because they’re offering but my parents don’t want to go there so they’ve said the person to deal with from home is my dads GP. I can see their point if he was in a hospice all the resources would be close at hand but we’ve all agreed as a family that we will take care of him at home and I honestly think if that’s what my parents want then that’s what they should have. We’re not struggling.with dad, he’s good to look after, it’s my mum that’s difficult and she feels like she couldn’t cope moving to a hospice out of the city away from home. She’s got me down the road all her neighbors etc...but yes I think they think my parents are being ungrateful and irresponsible by choosing to stay at home so the struggles are their own fault sort of thing but I think he’s better off home with us too because he’s happy. Its really difficult. Xxxxxxx

Oh at least you tried ... I thought they could sit with your dad through the night, occaisionaly.... mabye it's different in other areas .. but what an amazing family you all are .. you should all be very proud..  

Keep in touch whenever you want a chat or vent .. big vertual hug as always ... Chrissie xx

Hi everyone, 

My dad died on Wednesday in the early hours of the morning. I’m in a complete state of shock. Im empty. I don’t even know what to write but you have all been so lovely and supportive I wanted to let you know and say thank you. Xxxxxxxxxxxxxxxxxxxxx

So so sorry ... but what a trooper he was ... and your deff take after him ... my thoughts are with you ... there's another wonderful star up there looking down ...

Sending you a vertual hug.... Chrissie x 

Hi migi. So so sorry for your loss you can't say he didn't give it a good fight,, at least he's at rest and peace, you'll have to keep strong for your mother now but make sure you look after yourself as well, God bless you and your family,, best wishes.. 

I am so sorry for you. I have not been back on here for a while due to my own issues, but have read your post from time to time. The next couple of weeks are going to be very busy for you. The only crumb of comfort I can give you is time really makes things more bearable, I know it's cliche but it is the only thing that helped me. It's been 10 months since my husband died. Take care of yourself and your family

Betty xxx

Thank you guys. It will probably come as no surprise that my dad had the most horrific death in hospital. After the lack of care throughout I should have expected it. I’ve got a solicitor looking at the details and had a discussion with the head bereavement nurse today. Both were horrified at my dad’s suffering in his last few hours. It was over an hour of torture for him in the end and I don’t think I’ll ever get over what I saw.  The nurse today suggested that when it’s all sorted out that we get together and do a patients story to be used for training purposes to stop it ever happening again. I would like to do that because it would mean that something positive could come out of this but at the moment it’s so raw. I woke up this morning trembling and shaking. I wasn’t dreaming about him I didn’t wake up thinking about him I was just shaking all over. My mum so far is doing ok. Much much better than I could have imagined. I’ve moved her in with us so I can look after her but she should never have seen that either. I am so disheartened by the whole experience right from the beginning. It’s unbelievable. Xxxxxxx

Hi ...

I'm beond words ... never have I ever heard of so much injustice to one family ... you have all been let down so horribly and it's darn right crule ... where was the compassion you all deserved .. and it breaks my heart that your wonderful dad never got a pieceful end to his journey... a nightmare all the way .. just so glad they can't hurt him no more ... they should all hang their head in shame ...

When you feel stronger .. you put in writing all those things that stopped him having the journey he deserved... try to do what you said .. make it count, even if one person is helped , it will mean something ....but oh my, how proud your dad must be ... and he's safe now tucked up in your heart ...

I'm so so proud of you .. and feel honered to have vertually known you ... cancer sucks ... so does his treatment ...  big vertual hug as always ...  Chrissie x

So sorry to read about your loss and the terrible circumstances.

I’m so sorry for your loss, and horrified at what your family has had to go through, especially at the end. This should never happen to anyone. xx

I’m so sorry for your loss, and horrified at what your family has had to go through, especially at the end. This should never happen to anyone. xx