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,

Just wondering how everyone is getting along? Im also after some information if anyone knows who can help? Im having trouble with my advocate. My initial one left at xmas time, then it took until just before lockdown to get another one, but then she said she was having trouble writing my letter. So I wrote it for her and sent it to her at the beginning of lock down and she said she would send it along with a covering letter. She delayed and delayed, then a couple of weeks ago went on the sick. I was told that id be given a new advocate but they havent even replied to me. All they have said is that they cant just write a covering letter as they hadnt seen my file even though the covering letter is just a template they use and that I could send the letter myself. 

So Im wondering if I do send the letter myself, will it still be taken seriously? Or would I be better off waiting for an advocate as if its written on headed paper from an authoritative source it might carry more weight? I just feel like for some reason even the advocate people are trying to stall me on this and i dont know why! Theyre meant to be on my side but I have a sneaky feeling theyve given the concerns department the heads up about whats in my letter because they are definitely not helping me to get this letter sent at all. 

Has anyone got any ideas about this?

I hope everyone is well and keeping safe.

MiGi. XXXXXXXXXXXXXXXXX

Hi Migi. 

Nice to hear from you again, sorry I'm no good at the problem you have. Just thought id welcome you back. 

Hope this problem isn't to do with your other one. 

Hope you're keeping well and safe. 

Love Billy xxx 

Hi Billy,

You are so sweet, thank you! 

No its the same problem to do with my dad. Im not surprised people dont complain about the NHS a much as they should they make it almost imposssible, and it tkes so long to get anywhere at all! 

I hope youre okay. Its been a difficult few months with lock down hasnt it? Im in Wales so its nowhere near back to normal here yet, but getting there! 

let me know how everything is with you I really hope everything is okay.

MiGi XXXXXXXXXXXXXXXXXX

Hi Migi. 

Bit chaos just now. 

Bren is on anti psychotic meds, been on them for over 14 years now we never knew till a friend asked what she was on she should never have been on them so had a word with her psychiatrist and weaning her off them, she was like a zombie couldn't move couldn't talk she's alot better now but still more tablets to stop, friends suggested suing, don't know yet.

I've had problems with my cancer count beginning of year it was 2.2 early this month it was 65 oncologist told me she's given me wrong meds, so she's sorting it out then I'm waiting three months to see if they work..

Hope you're OK and being safe. 

Love Billy xxx 

Hi Billy,

Its awful, so youve both been given the wrong medication then. I think i would raise a complaint. My friend died a few weeks ago, he had been given medication by the consultant but his GP didnt agree he needed it and stopped it. Its a shambles and even though its hard I would encourage everyone who this happens to to speak out and say. 

Im so sorry about this though, how are you feeling? Do you feel ok in yourself or are you feeling pretty rotten? 

MiGI XXXXXXXX

Hi Migi. 

I'm still feeling OK in myself, i think that's main thing and keeping positive. 

I've talked to bren about doing something about it but she's worried about any hassle or loads of questions she might get confused with. But she does worry about it being done to other people. I'll have to see if she changes her mind in the future.

Love Billy xxx 

Hi Billy,

It really helps to try to stay positive, Im glad you feel ok in yourself. Thats one good thing. 

I dont blame Bren, shes been through so much already, and shes right she probbaly would be confused with all of the questions etc... sometimes you just have to focus on getting through it because thats hard enough! Im thinking of you both, sending you lots of love. 

XXXXXXXXXXXXXXXXX

I am so sorry to hear how yor are being treated . It must be very frustrating for you. I remember 

twice I had the audacity to complain and the second time  the hospital actually called in the police because the nurse had put the tube into my husbands lung despite him telling her to stop and take him down to the emergency room at the hospital. Despite all of this and the statements the police had even from a chaplin who was another patient telling the he had overheard her saying they woud laugh at her, Nothing came of it . The tube was left like that until the next day. I was so sick and tired of trying to fight and feeling so useless and watching my husband slowly die at the same time. Only ranting so you will understand I see the frustration you are going through. Sending you my best wishes and love. Betty xxx

Hi Migi. 

Something i just remembered from over fourteen years ago I'd just been diagnosed with addisons syndrome. (my adrenal glands don't work so i have to take permanent steroids to put into my body what the glands usto do or i go into a coma and die).

Specialist put me on two different meds, when i picked up prescription there was two more meds on it, i just took them. Saw specialist after 2 months and he played hell about what Dr had put on. He sent me for a blood test results came back and he put Me back on Dr's meds it made wonder who was the expert.

Love Billy xxx 

Hi everyone, 

I hope you are all ok and doing well. I haven't posted for such a long time but I have an update....

We heard back from the NMC on Friday and the nurse responsible for my dads care is being investigated. It took over a year for them to decide but now it seems like they are doing something. 
I am exhausted from it all and we still haven't had any answers but that's where we are at the moment. I'm not giving up, I am still fighting for an apology for what she put my dad (and us) through but it takes so long. 

Sending my love to you guys. 
Migi. Xxx

Hi everyone, 

I hope you are all ok and doing well. I haven't posted for such a long time but I have an update....

We heard back from the NMC on Friday and the nurse responsible for my dads care is being investigated. It took over a year for them to decide but now it seems like they are doing something. 
I am exhausted from it all and we still haven't had any answers but that's where we are at the moment. I'm not giving up, I am still fighting for an apology for what she put my dad (and us) through but it takes so long. 

Sending my love to you guys. 
Migi. Xxx

Hi migi, lovely to hear from you, glad you got paperwork sorted and in, but terrible it's taking so long to get things sorted. 

Things chaos here Brenda had a bad uti and wouldn't take antibiotics and turned nasty, throwing things at carer and me, carer thought i was at risk and called police, they thought same and called ambulance took Brenda in hospital she hit a nurse so she was checked and sectioned, she is improving but don't know if she'll ever be completely right. 

She's had 8 TIA, and she's got white matter brain disease, as well dementia  

Im temporary stopping cancer meds as always tired and lacking energy puffing very often, oncologist wants to see if meds are responsible. My cancer count is going up but sticking with it. 

Bella had a lump lucky after op not cancer. 

Hope you and yours are doing ok. 

Love Billy xxxx 

Hi Billy!! 

It is really great to hear form you. It sounds like you are having such a rough time. I feel for you. The whole cancer thing just sucks so much, I hate it. I was feeling really poorly for a while and I was terrified that I had it but it turned out I am just anaemic and have a B12 defficiency but for those few months I was thinking I cannot go through cancer in this area where the care is so dreadful, it was scary. 

I'm ok, my family is OK. Its been tough because when we think of dad now we are apologisong to him up in the sky or in his garden or to his ashes for what happened, rather than having nice chats to him where we can tell him we miss him you know and we haven't been able to really move on and remeber the good times so much because the case is still ongoing and his death and illness is totally overshadowed by what happened. 

I really hope you are doing ok despite how terrible things are for you. Somehow it seems like we find an inner strength that helps us through the horrible times I don't know but that's how it felt for me. Looking back I just don't know how we coped but at the time we just did and I know that it is the same for every single person on here too. 

Has anyone heard from DaveK? Do you know if he is still ok and doing well? You have all been such a great support for me I am so annoyed that the system is so bad. I feel like there is no need for it to be like this, its cruel. 

Please take care!! 

MIGI XXXXXXXXXXXXXXXXXX

Hi MiGi,

I'm still doing fine thanks, I'm in for a six monthly CT scan today but that's just to check for any changes. As far as I know, I'm still in remission which is amazing.

I'm working again on a contract for the NHS which is keeping me busy and out of mischief. Only part time, so not too much stress. 

Still volunteering with CRUK on the health awareness roadshow and on the campaigns. We're down in Parliament next week lobbying MPs which is always interesting and a positive way to channel my anger about the current state of the NHS.
 

When I was first a cancer patient in 2013, I never imagined that 9 years later cancer  services would actually be worse than they were then. It makes my blood boil when I hear politicians trying to blame Covid for the issues - almost all monthly performance targets were missed in 2018/19 before Covid was a factor. Things were so bad they tried to water down the targets. 

I hope you're keeping well in spite of everything!

All the best

Dave