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 Tracy,

People often describe it as a rollercoaster ride of emotions. Sadly for some people it can feel like there is no upside, especially when diagnosis is late and the prognosis is poor.

Your message reminds me strongly of why we campaign to try to improve things and why I get so cross when government ministers and cancer experts at conferences seem so smug and complacent about the current state of affairs.

Best wishes

Dave

Hi Dave, 

I'd heard of autism because of the fuss re the MMR vaccine twenty years ago with my eldest two and I always thought of it as a childhood thing which is so silly of me because obviously children grow into adults. The penny dropped very recently and makes sense now. Like yesterday, my daughter and I walked in and immediately knew dad really was not well at all but mum seemed oblivious and sort of almost ignored the fact that he was hunched over obviously suffering. She adores him, there's no way she would want him to suffer but she didn't pick up on it and it was blatant. I took my girls home and when I came back she had called an ambulance but he had told her to. But when dad WANTS an ambulance it means he NEEDED one at least an hour before if you see what I mean. 

Yes he's on Oromorph-10 Mls every hour and 30 mg of Morphine every 12 hours (they increased the morphine last night). I thought he was handling the pain killers quite well but he was slurring a lot the last two days. We thought he'd overdosed on the oromorph but in fact he had taken a bit less. He can have it every hour if he needs it and hadn't felt like he needed it but then look what happened! I think he was away with the faries at certain points last night but generally seems ok on that front. 

I've got to be honest I am absolutely shocked with the state of things with this. Its like I said, I feel like there are no positives. I know nothing about the politics re cancer treatments etc... But if the government thinks this is ok it's really not. Maybe they mostly have private health care so don't understand what it's really like. It seems like they're out of touch with normal people with lots of things. 

Xxxxxxx

I have to agree with you, the government are totally out of touch with the healt service, it's terrible. I have so many horror stories over the last six months regarding hospital care if I still had not kept documentation people would not believe me. At one point my poor husband had a tube inserted into his lungs instead of his stomach, despite him begging the nurse to take him downstairs to the A & E so someone who knew what they were doing could do it. It was discovered next morning by the encologist. I did complain To PALS and  the hospital even informed the police there was a police report about this. In the end despite there being a former chaplain as witness nothing was done it was the nurses word against my husbands. So thats another reason I did not want to complain about his awful treatment , its so horrendous and disheartening. Sorry for going on but that was the one and only time in my life I had ever made a complaint. All you can do is look after yourself and your family the best way you can. Thinking of you. 

Betty

[@Brien]‍ 

Hi, 

Thank you so much. It breaks my heart reading that. I just feel for you. Three weeks ago tomorrow we started this "journey" as they say. Already it's a mess. I feel so bad posting here in a way because I'm a really positive happy person, we do a lot of mindfulness etc at home, we're happy go lucky and always counting our blessings etc but I can't find any positives in this. This is an absolute nightmare and my poor dad. It's like we are having a harsh dose of the reality that's on the news all the time about the failings of the NHS. My dads going to die soon I know he is and I am just so gutted. I've cried so much my eyes are swollen. My mums just not getting a grip on it all, I can't go back to work because suddenly I'm taking care of them both, but I have to go back to work only I really really can't. She's already messed up his medication twice. I had to step in again and make her tell the doctor she'd made a mistake otherwise dad would have been on 100 mg of morphine a day and he's already off his head because of her mistake which meant they already doubled it and he didn't need it, she almost had them treble it. I just don't know what to do. They had a falling out all day because mum booked a home visit but dad didn't want her to. All day they were bickering and dad was really upset. I turned up at 1, I asked him what he wanted and he told me he was fed up, he'd seen enough doctors he didn't want to see one today. I asked him if he wanted me to cancel the visit and he said yes. So I did. He said to me "Thank you for rescuing me." He was happy then, but all day stressed out over it, he didnt trust her to not let them send him back to hospital for some reason and I don't blame him. If his meds had been tripled he would have been back in because he'd have collapsed on all that morphine. It's not her fault though, she worships the ground he walks on she just seems to create these problems all the time so I have to over see it all. He's asked me to take him for his biopsy tomorrow so we're off to do that, mum will come too but I know he feels better when I'm there. I've said mum has mental health struggles, but no one has offered her any support with dad over this. She's been misdiagnosed because like I've said before she's autistic, they both are. But the NHS is just as bad when it comes to mental health. That's another minefield where nobody knows anything and they just throw buckets of medication at you and leave you to it. I am being so negative! I'm going to try to go back to sleep. I'm constantly waiting for my phone to ring, I know my parents will be awake now because they're hardly sleeping. Dads scared to sleep in case he doesn't wake up. He'll fall asleep on the sofa he won't even go to bed now so mum is catching a little bit of sleep on the other sofa. They're permanently dressed just in case, it's just so so sad. 

I'm sorry I'm venting and not saying anything helpful to anyone. Maybe it's just a phase you go through with it all. 

. Love to everyone. Xxxxxx

Just wanted to let you know I am thinking of you. You will be Ok, you are doing all you can and thats all any of us can do.  I now feel guilty now and then thinking I should have done this or that, but I know deep down that we are human beings jusst doing our best for the people we love. 

Betty

Hi Betty, 

You shouldn't feel guilty. My mum is like that already with my dad. We've had trouble right from the start of his diagnosis, everything from nasty nurses etc.. She blames herself every time she can't get him what we think he needs and it's not her fault, the system is just impossible. I know she'll have the guilt thing when he goes but honestly we just like you are doing our absolute best that we can given the huge obstacles. Dad is hunched over now. His neck is stuck forward like his chin is in his chest. He's in so much pain but it's biopsy day today so we are hoping someone will be able to do something. It's almost as if he needs to be stretched out, I was teasing him yesterday that if he didn't lay on the floor and do a bit of stretching I'd peg him on the line for twenty minutes to shake him out! I don't even know if this biopsy is worth it. He doesn't look to me as if he can cope with one day of chemo let alone the full course. He's deteriorated so much. I'm so annoyed they made him wait three weeks, not forgetting it's ten days until the results come. It's too long. But hey. I'll let you know how we get on, I'm picking him up at 12 for the appointment at 1 so fingers crossed. It's breaking my heart seeing him like this, he was always so strong, but he's so skinny and his bones are showing on his face. This disease is cruel. I never in a million years could have imagined this, I feel so sorry for everyone who ever has had anything to do with it. I really do and I think we all just cope and do the best we can. Like you said it's all we can do but it's so sad and so frustrating. 

Take care Betty. Have a lovely day, keep warm! It's so cold out there!!! Xxxxxxx

Not sure if you know but your Dad is entitled to an allowance each week its only 85 pounds but its not means tested or anything. He is also entitled to a disabled sticker which you can use driving him to hospital appointments or anywhere for that matter.  It is a long time for you to wait for an appointment especially cancer. Just the waiting itself is stressfull. At the very least they should be giving your Dad some painkillers that actually work. I'm so sorry for what you are going through.

Take Care

Betty x

Hi Betty, 

He's got pain killers but still in so much pain. The community nurse is coming tomorrow with a doctor so hopefully will sort that out then if not today at the hospital. 

Mum and dad gave up work a couple of years ago. Mum had a breakdown then dad had to stay home to look out for her. They get basic benefits but it's not a lot, I know they struggle a bit. They don't like making a fuss and I don't think they know what they're entitled to. I do say but they're autistic so they panic too much about everything and me saying doesn't help. What is the £85? Do you know how to apply for it? I know when I popped into the Macmillan advice centre at the hospital they gave me a form to give mum to apply for a grant of £400. The doctor filled it out for her but she hasn't heard anything yet and I'm pretty sure that's a one off. My parents just freeze when it comes to forms and phone calls so I'm going to have to do it for them. In ten days we will have a definite answer to some of our questions and will know what if any treatment is available for him. But it's definitely bad and definitely terminal so he should qualify for some of these things for sure. Thanks so much for letting me know about those things Betty, have a good day. 

Xxxxxxxxxx

Hi Betty, 

He's got pain killers but still in so much pain. The community nurse is coming tomorrow with a doctor so hopefully will sort that out then if not today at the hospital. 

Mum and dad gave up work a couple of years ago. Mum had a breakdown then dad had to stay home to look out for her. They get basic benefits but it's not a lot, I know they struggle a bit. They don't like making a fuss and I don't think they know what they're entitled to. I do say but they're autistic so they panic too much about everything and me saying doesn't help. What is the £85? Do you know how to apply for it? I know when I popped into the Macmillan advice centre at the hospital they gave me a form to give mum to apply for a grant of £400. The doctor filled it out for her but she hasn't heard anything yet and I'm pretty sure that's a one off. My parents just freeze when it comes to forms and phone calls so I'm going to have to do it for them. In ten days we will have a definite answer to some of our questions and will know what if any treatment is available for him. But it's definitely bad and definitely terminal so he should qualify for some of these things for sure. Thanks so much for letting me know about those things Betty, have a good day. 

Xxxxxxxxxx

The 85 pound is paid weekly and is not means tested. It is given to anyone diagnosed with terminal cancer. They do not backdate this so apply ASAP. Call the MacMillan nurses sent me the form, it was very difficult to fill in, so they did help.I gather most people need help with it.  Hope your day is not too bad. Betty xxx

Hi, 

I can't believe it. The palliative care doctor and nurse came out to see my dad today for the first time. They were lovely and we discussed many things including dads anxiety and sleeping problems. The doctor said he could have two lots of meds which would help him a great deal. She said that GPs don't really like to do it as a long term thing but for 4 or 5 days to try to calm dad down and get him sleeping again it would be perfect. She said she would speak with dads GP and have the prescription ready today. So mum called the surgery this evening as she was told to do to find out if it was ready to collect only to be told that the GP has refused to do it. How can that be allowed to happen? It makes absolutely no sense to me and I am gutted. We waited three weeks for the palliative team to come out and now dad can't even have what they said he needed. I honestly honestly cannot get to grips with this whole situation. I feel like I should be jumping up and down making complaints but the amount of things that have been appalling is just incredible. I wouldn't even know where to start. I am so sad tonight. Mums in pieces. I feel and am so powerless to help him. I'm blaming myself for not being able to come up with ideas and solutions to get help for him, but it's like walking in quicksand. It's hard to get anywhere. 

I absolutely despair at this whole thing, I really do. 

Xxxxx

OMG - time to call in another GP, and demand to know from the practice’s senior partner what the h3ll this fool is playing at. Turn up in person and politely refuse to leave until you get the outcome you need. They hate having patients loudly complaining in the waiting room or reception.

Maybe contact your CCG and local news to explain the situation and ask why your Dad is being put through so much suffering.

I really feel for you and your Dad - this sort of behaviour by GPs makes my blood boil. 

Best wishes

Dave

I'm so sorry that you are going through this unnessesary stress. This is a time when you need help and are having a difficult time emotionally anyway. I found it very difficult to make a fuss as it really not in my nature. I did a few times.  I do know he was glad  someone wass trying although he was also worried about me.  Perhaps if the GP will visit your Dad in his home he might understand the situation better.

Take Care

Betty 

Hi Dave, 

I hope you're ok. I spoke to mum about it again yesterday and she's terrified of confrontation so she said were managing at the moment, dad got some sleep so she wants to see how we get on. . I said to her what about next time then? What happens the next time dad is desparate (or another patient) and the GP refuses to cooperate? Then what? Will she just say "Oh well.... Never mind." It's not just about us and our little family I've tried to explain to her that this is fundamentally wrong on every level but she's breaking down every half hour or so at the moment. She's crying much much more now than she was which is partly exhaustion and partly because dads going down hill rapidly and she can't bear to see him like it, none of us can. The palliative care doctor said about getting it in place at the surgery that I can speak to doctors about dad etc..... So when they come out next week I'm going to organise this. But mum said to me yesterday that she's fed up of everyone telling her how much help and support is available because whenever we ask were told its at least at 3-4 week process to even access this because of waiting lists and the need to be referred etc....we have asked and it is coming but in all honestly I wouldn't be surprised if all the help turns up in one go the day after dad dies because so far we've been sent a perch stool so dad can have a wash if he wants which he didn't want and has hidden somewhere. It's like dads neck has locked down. He's like a hunch back. It's gone completely forward and straight so his chin is resting in the top of his chest if that makes sense. He's in agony with it despite the painkillers working on the actual cancer bits. Mum massaged it for 3 hours last night between 3 and 6 am constantly to try to stop the pain for him. We've asked for help, maybe some holistic therapy (which is meant to be free and available) but we eventually got told to buy a heat pack and some ibuprofen. I did this obviously but seriously? The palliative care doctor said she'd have a look at his scan results to see if anything showed up and would get back to us next week. Next week!!!! I know dads not the only patient on her list and you can't just snap your fingers and expect them to magic up a chiropractor or something but it's a joke. Anyway. I'm sorry for ranting. I'm just not taking this very well and my dad deserves better as do a lot of people. I don't even like talking about this I really let go on here but even then I feel guilty about my negativity. I wish I had lots of positives to say but it just isn't like that for us. 

Hope everything is ok with you. I'm going to have a couple of hours now before I go to mums. 

Xxxxxxx

Hi Betty, 

Your messages are really making me feel better, and [@davek]‍ I really appreciate the support from you guys. I'm sure your husband was so grateful knowing that you were there trying for him, my dad is really loving us all being there helping him he's told us he feels so lucky to have us and so loved. That gives me massive comfort just knowing he knows we're here to look after him. 

Youre so right about the emotional stress. I'm a really practical person, I'm quite blokey like that, I cut through the rubbish and look for solutions to fix things but this has floored me. And it's not even about me! I'm having to stay strong for them both and for my children, I am basically the one who holds it all together but mum squeezed my arm yesterday when I was sat on the sofa and I thought don't! Don't start that because I won't be able to do this if you do. I'm really worried about my own situation too. I had a career as a motorcycle instructor for the DSA for ten years, I gave up because I had my girls. I took a job in events when they were first born but it took its toll all the long hours etc and having to rely on my parents for childcare so I decided to take a part time job, be a partly stay at home mum and claim tax credits, not ideal but had to be done temporarily. The twins are in school full time and now that my older two are settled with their places at university I'd been organising studying a degree in psychology and counselling with the open university. To kick start myself a new career so we wouldn't have to struggle and to also give myself something useful to do because I don't like being home. Now it's all turned on its head. I couldn't take my new little job because dad got diagnosed and now I'm faced with caring for both parents. I want to care for them it's not a problem to me, theyre my mum and dad, I can't think about much else at the moment except are they ok!! But I'm scared of facing the next I don't know how many years of my life being a carer  because I won't have any money, I'll have no time, I'm facing the next part of my future out of work and on benefits and that was never a consideration for me and it hurts. I'm 42, I didn't have long to start up a new career you know? I've already this last three weeks had to let certain bills slide because it's cost a fortune, petrol, parking, extras for mum and dad and us, silly things like grabbing a coffee and a sandwich etc...I'm really worried about how this is going to work out. If I didn't have the children I wouldn't worry but I've really got to come up with a plan to make it so we're OK here and my parents are more than ok there! At the moment I'm failing to see how I can do this but I will, it'll be ok. This worry along with the fact that we are watching dad die and my mothers heart break is just horrible. My Aunty is really nice, she's just retired from nursing and she's told me I'm not on my own I can ask for help anytime and she's been brilliant and my nan and uncle so it's not like I'm completely alone but ultimately it's my responsibility to make this work you know? And I am feeling the pressure already even now which I feel really bad for saying. 

Anyway, it's 7am already-I have a bath waiting for me! I'm going to put a dress on today and a bit of makeup to lift me! I went to my parents in my pyjamas last night-it's not good enough!! Haha. Have a lovely day you two and I will let you know what's happening here real soon. 

Xxxxxxxxxxxxx

Just a quick note to let you know I'm thinking of you. Hope your weekend goes OK. Try not to worry too much about the future right now, and get as much help as you can. Hope your Dads is not in too much pain. Take care

Betty xx

Thanks Betty, 

It's been a tough few days. We still can't get anyone out to see dad. The nurses, occupational therapist etc are very busy and still can't say when someone will be able to come out. We've rung all the support numbers we were given by the palliative care team and the hospital but we go straight to answer phone and nobody calls back. Mum finally got through to the surgery practice manager yesterday who is investigating the GP refusing to write the prescription for dad and the other failings we've experienced so far but dad still hasn't had the prescription . Mum had been ringing all week as she wanted help to bath dad, help to get him to eat and drink because he won't, and help with his neck because his chin has been locked down into his chest for over a week now and he's in agony. She is physically having to hold his head up for him half the day now and he is in agony. The palliative car team did say they'd sort it out last Thursday but so far nothing. She finally got through to the nurses yesterday but was told they're still too busy to come out but he's on the list they just can't give her an exact date for when they'll be there. To shut her up I think, they said she can pick up cushions and a gadget thing for his bed that we can pick up tomorrow or wait 10 days for it to be delivered. If I can't fit them in my tiny boot then that's another waste of nearly two week, not that we want gadgets, we want help and support. Mum was angry yesterday and sobbing. It is horrible. I'm there everyday but I can only do things like shopping, cleaning, sit with dad while mum has a bath. I'm not medically trained, I've no experience with cancer and I don't know what's happening to dad or what to expect will happen etc... I keep telling mum it'll be ok but it won't. Dads gone down hill massively and she knows it. This is the most helpless situation we have ever been in and I can't believe it. We are two minutes from the best hospital in Wales in the middle of a city and nobody can get to us. Dad was given 2 months to live a month ago now, I just can't see how this is right unless they've just written him off and haven't told us. It feels like he's so ill that they think that as he's dying soon anyway it's pointless spending time and resources on him. I don't know I might be wrong. He has the results of the biopsy (finally) on Monday but mum called me heartbroken yesterday morning saying she didn't think he was going to make it to then. But then he perked up randomly and ate something. It's a massive horrible roller coaster. If I get diagnosed with cancer ever I'm going to just swallow all my pills in one go because I am not going through this. This is inhumane and dad even said to me the other day he can't live like this, he almost wants it just to be over. Xxxxxx

Such an awful situation - and they wonder why people dial 999 and move their loved ones to A&E by ambulance for pain relief.

"Very busy" just doesn't cut it - patients like your Dad are who they should be being busy with! What higher priority could there be for a palliative care team? 

Why not copy and paste your post and email it to your MP and AM asking how they'd feel if their parent was being ignored like this, copied to your local press and TV station? It couldn't possibly make things any worse. This is an intolerable and inhumane state of affairs which no-one should have to put up with. 

I feel so angry on your behalf - I wish I could offer you more than sympathy.
Dave

That's awful, I think Dave's last post was correct, take it to the papers or TV. I keep hearing how great the palliative care teams are and I'm yet to be convinced. People are constantly saying how wonderful our NHS  is but as far as I can see its just an utter shambles.  I understand the NHS needs more money from the government and absolutely agree with it, but thats no excuse for being rude and acting so badly. I'm so sorry for the way your Dad is being treated or rather not being treated, its a hugh strain you can all live without. You express yourself well and should write about your Dads treatment everywhere you can. Take care

Betty