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 [@Minska]‍ 

It's so lovely to hear from you, thank you for such a lovely message, it's cliche but I'm really touched by the kind words you wrote and you can see how gorgeous the people are around me here, I am so lucky! So please jump in and stay!! 

[@Chriss]‍ Youve helped me lots today and [@starcatone]‍ and [@Minska]‍ I woke up to the most lovely messages and you all made me super emotional and so grateful. It was a tough day and I take so much comfort from you guys and just the most lovely way you are. Thank you! 

Im so tired! I might even sleep tonight at this rate! Aaaaawwww girls, how are you all doing tonight? Did everyone have an ok day? Chrissie, did you manage to get out after? Xxxxxxxx

Hi Tracy-happy to stay xx

You have been dealing with really tough stuff in addition to the news of a cancer diagnosis and my heart just breaks for you. I lost my mum to lung cancer almost 3 years ago so I have a little understanding...but did not have to deal with as much as you are dealing with as I lived so far away. I did look after her at home for her last few days however, which enabled her to stay where she wanted to be and I found that really challenging and upsetting. But I never cried, I stayed strong and never once broke down. So I understand where you’re coming from. 

I will keep in touch and am I’m here a lot if you need a friend. I hope you can get some sleep tonight-rest is so important but I know it can be hard when your mind is racing away. Big hugs to you. xxx

Hi tracy ...and yes, I braved the howling wind and rain and blew the cobwebs away ...  and at my age ive gathered a fare few cobwebs .. lol ...

Hope you get a good sleep .. it will really help you .. so sweet dreams .. Will pop by every so often .. so keep this thread going ...  chrissie

Hi ya ...

Just popped by to send you one of my (emily) hugs ... I know they are spiecial ... so hope you can feel a vertual arm around you ... l still can't believe the rocky road your on .. it makes the normal cancer rollercoaster look quite tame ... 

Your dad's been badly let down by a system, that should be in place every day .. but as we all know that system is in tatters ... great at times .. mediocre at most times, and a total failure for your dad ... it's no wonder your up most nights, I recon your brain can't relax long ... though it's nice to have your company when I can't sleep too ...

In a way I'm glad they are not giving him treatment as he's been through enough .. and that puts even more strain on the body, esp when he's in pain anyway ..  there's a time to know just holding their hand is all that they need now .. you are deff an angel, and if I'd had a daughter like you, I'd feel the luckiest mum ever ...  always here hun .. take care .. and I'm sending you a massive big hug ... 

Chrissie x

Hi MiGi,

This is an incredible long sad story, so as [@Chriss]‍ I also went to read your home page to be fully updated. 
That has been a whole rollercoaster for you, honey. It seems you are a supermum and a superdaughter!
I'm going through similar things but in my case is my boyfriend that is very sick (stage 4 colon cancer) and I'm also changing jobs!
I'm sorry you are going through all this mess. It's tricky because you have to deal with your own feelings and also support and caring for both your parents while working and being a mother of 4(?)... That really seems exhausting, you have my sympathy! I hope you managed to have some sort of financial help to be a full-time carer or any kind of solution...
I totally understand that you're feeling negative regarding cancer. Besides all the poor experience with NHS, when you receive so many bad news at once it can be devastating. For me it was hard to deal with overly positive people when my boyfriend was being diagnosed and treated...
I do believe that you are strong and that you will sort all this situation the best way possible. It was the women's day a few days ago and we women are indeed amazing.
I'm glad this forum is helping you!

Take care*

Hey there, 

Thank you so much for such lovely messages guys. I'd be really happy with a mum like you Chrissie. You are beautiful. I knew I wouldn't sleep tonight so I waited to reply. I haven't been here long and so much has happened. I think I'll always feel negative towards the NHS about my dads care. Its been awful and like banging our heads against a brick wall. I'm normally pretty good at sorting things out but I've failed this time. I do have a big positive that's coming from all of this though and that's that I'm getting to spend lots of time with my dad. He's actually asking for me every day, he says to mum " Where's Tracy? Will she be here soon?" Every day! And I just love that it's me he asks for! I am an only child in fairness so there's nobody else for him to ask for but still, I love when my mum tells me that! I'll walk in and he'll say "hello baby girl" He says thank you to me so much I've told him to stop! It means so much to me that I'm the one that makes my parents feel comforted and looked after in all of this. Dad told mum he feels really loved and cared for through all of this and I couldn't ask for more in that sense. I gave up work, I handed my notice in last Friday. Macmillan supported me through that and I'm in the process of claiming benefits which are related to caring for my parents. It may only be for a short time although I'm not sure how it will go with mum when dad goes-I honestly think I'll be on suicide watch or she will end up in a psychiatric unit for some time. But that's in the future, I'm trying not to think too much about that. It's one day at a time. I've repeatedly stressed about mums problems and she's been offered counselling like we all have but its not enough for mum, she's more complex than that. The mental health service we've got is really lacking too. She's very confused but she understands I'm doing my best for them in a really difficult situation. My daughter is still starting uni in a couple of weeks, my son is getting himself together again and catching up on his uni work that he let slip when we first found out. Things are going ok. I have had a virus the last week or more and that's been horrible. It started out chesty but has gone sicky. You know when you're sicky you can't function too well? That's been me! I've been in Tescos breaking out in a sweat thinking "please don't be sick!" I've wondered if it might even be my age, I'm 43 soon so I'm not sure but it does feel more like a bug I think. My twins are doing great, they had 100% attendance in school last term. Lots of things are really good. It really is one day at a time. It's a horrible situation but you do find your way. You get some inner strength you never knew you had and somehow you cope. I do hate everything about this disease and it's everywhere. But the love we all here create to fight it and to support our loved ones and each other is incredible. If love could cure it, it would be a done deal. I'm waffling because I can't sleep but I'm half asleep! I'm really tired but like Chrissie said my brain won't relax for long. It's cold tonight too isn't it? Have you guys noticed how cold it's gone? It's like we've gone back to the middle of winter! My feet are cold and they won't warm up, I tried a hot water bottle I'm going to find a pair of bed socks I think! Lots of love and hugs, I hope you're all sleeping! Xxxxxxxx

And this goes without saying I know but you guys are the best and I appreciate you and every word of your gorgeous messages more than you know. Thank you. Xxxxxxxxx

Hi I've just seen your post idont know what hospital yours is but my wife had to go in last year itook her in she is in a wheelchair our own I asked the nurses if I could stay with her they said OK I was there from6.30a m to 9at night I had 1/2 hour for dinner she was in for 6 days I fed her took her to the toilet washed her nurses didn't mind I was. Making their job easier. I've been doing it for years anyway I'd not like the bed it was nearly a meter off the floor and wife is only 4foot 10 we managed.sorry to hear about your dad have they got it right this time round. Is your mum managing OK. 

Billy

P.s a lot of hospitals have a apecial room for people like your dad where they can stay together i think you have to pay though it might be worth checking. 

Hi [@Billygoat]‍ 

Hi there! 

It's nice to hear from you-how are you doing? 

With dad it's been really hit and miss since his diagnosis. We're in South Wales. Dads at home, he wants to die at home, so we're doing our best to look after him ourselves but it's been quite difficult especially the last few days. Dad could go into a hospice but I know that is something he really doesn't want, he's scared and wants to be with us. We're really happy to look after him, we just feel like we can't look after him as well as we would like to because we haven't had any support or much guidance really. We've given up asking now to be honest although Marie Curie are due to give us a call to discuss help for dad and us so maybe.....finally! Xxxxxx

Hi there hunny ...

You know so much has been happening on here, so so many having a tough time, l forgot to see how you are now ... I'm so sorry ... 

There's been so much on here about lack of help for those like you at this hardest part of the journey .. l volunteered for McMillan in my area and saw how they worked behind the sceans to coordinate us to visit cancer patients (before l got diagnosed) and I also took those who didn't have transport to to chemo or other treatments ...  

It breaks my heart to see the posts now on how they are failing ... l just wish someone from there could read these and see where things need to change ... they were life savers when my brother in law was at end of life cancer ...  l will try to contact someone there and see if there's anything they can do ... but I'm just me, l dont know if or what can come from this ... but will let you know ..

One thing I've learned while here is Marie Currie seem to fill that gap, and really do try to help those at end of life .. though they seem to get less publicity. . Their home page is really good .. and I've had great feed back from others that have called them ... 

This is a heartbraking situation all round ... cancer sucks ... Chrissie xx

Hi there hunny ...

You know so much has been happening on here, so so many having a tough time, l forgot to see how you are now ... I'm so sorry ... 

There's been so much on here about lack of help for those like you at this hardest part of the journey .. l volunteered for McMillan in my area and saw how they worked behind the sceans to coordinate us to visit cancer patients (before l got diagnosed) and I also took those who didn't have transport to to chemo or other treatments ...  

It breaks my heart to see the posts now on how they are failing ... l just wish someone from there could read these and see where things need to change ... they were life savers when my brother in law was at end of life cancer ...  l will try to contact someone there and see if there's anything they can do ... but I'm just me, l dont know if or what can come from this ... but will let you know ..

One thing I've learned while here is Marie Currie seem to fill that gap, and really do try to help those at end of life .. though they seem to get less publicity. . Their home page is really good .. and I've had great feed back from others that have called them ... 

This is a heartbraking situation all round ... cancer sucks ... Chrissie xx