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 [@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

Well on a personal level MiGi ... you know l felt really emotional reading how your dad is so loving to you .. it's sometimes just a bit of kindness that can move mountains ... what you've done for him now, will mean so much to this last journey he's walking ... he's got you right there by his side ... and your both holding on to mum too .. 

I remember my mum was always telling me how wonderful I was in those last year's .. she was always with us, even on holidays .. but I kept telling her, she'd been my pillow when I cried .. my best friend over the years ... and the most wonderfull nanny l could have wished for .. l could have never done enough to pay her back .. as I've said so many times she  went with a heart attack and no warning ... but you know it would have been even harder to see her go through what your dad and many others are going through now ...

I don't know how you are still so strong ... maybe adrenaline keeps you going day by day .. to just get through one more day .. I'm sure if there are angels down here, your one of them ... l just hope Marie Currie come through, where others have let you down ... 

I really wish I could give you a real hug and not a vertual one ... but if you feel an arm round your shoulder right now, that's me ...  Chrissie

Hi Chrissie (and everyone here!) 

I need to apologise for not being here for a while. I've been thinking of you guys and I've wanted to click on so many times (as you know I don't sleep anymore!!) to say hello and to see if everyone's ok or if I could help anyone. The reason I haven't is because I didn't want to tell people what has been happening and make anyone feel helpless like we do because I've learned the past few months that hope and determination are so important in this fight. I didn't want to say anything more that would take that away from anybody because it's not fair. People read our words and look for help and comfort and I didn't feel I could help or comfort anybody if I was being honest with myself lately and by sharing what was happening I wasn't sure if it might make people give up hope or just accept that that's how it is when you're diagnosed. People also come here for the truth and an honest answer from us because they trust us and we are going through it. I didn't want to share bad things but didn't have anything good or positive to give which is awful! I always find the positives in everything and to be faced with none is pretty hard to take. I want to jump up and down and say "oh, try this! Try that! We did this and it worked!" Etc etc... But we haven't had that experience to be able to say that. Through my daughters medical training I've realised too that the way dads been treated is appalling. Even going back as far as the nurses who "looked after" him at the point of diagnosis. I can name two that should have been struck off for what they did. That's from an objective point of view without letting personal feelings get in the way. Let alone the wasted appointments with others. 

So fast forward four months. My dad recovered quite well after they finally agreed to review his medication. He's done really well. Back to chatting and eating and wandering about. He's much better than he was. After four months of begging for treatment to at least TRY to prolong his life they've finally agreed last week. My dad decided enough was enough of us constantly being fobbed off and he demanded himself that they do something to help rather than just filling him up with pain killers. He's having a scan to see how the cancer is progressing and he's being tested to see if he will tolerate anti cancer drugs. But my dad had to get out of his wheel chair walk into the consultants room and beg for that after being kept waiting nearly three hours (they were running late for appointments that day and had forgotten he was coming so he wasn't on the list despite us taking the appointment letter with us!) 

Its a positive step and I'm glad I have something good to write here because it's been a long time coming! And if dad hadn't created a fuss he wouldn't have even been seen that day let alone anything else. We've tried to get him help and we've failed. I've tried to explain to the people dealing with my parents that they're a bit autistic and mum has mental health problems but they continually ignore this and push mum to breaking point, usually when I'm not there to step in. The physio therapist never came back, the nutritionist said its normal to not eat, don't worry?! They forced him to sign a DNR form. All sorts of things. 

I know you'll wonder how I'm doing and I'm ok! My son has just finished his law exams so he's coming home to live very soon and I can't wait! My boy only lives five minutes away and I see him all the time BUT to have him home just knowing he's here until September is so precious and I am looking forward to it so much. My daughter is doing really well with her student nurse training. She's very happy, she's still at home because she's in the hospital near us. My little girls are delightful! Being a bit temperamental at times but there's a lot going on so that could explain it. Plus I bought a computer but could only afford one so they're having to share it and they don't like to! Generally though they're all amazing. I'm looking after myself too as always! Lots of bubble baths, face masks, I fake tan, make an effort as much as possible to wear a nice outfit and at least a little bit of makeup, anything to just make me feel able to face everybody. It's a bit of a front but it does help. Just the routine of moisturising and putting on makeup is a distraction and five minutes for myself. It's almost therapeutic in a way and I don't know how you guys feel but if I feel I look half decent I feel stronger somehow to go out the front door and deal with life. 

we had a lovely family day out recently to the zoo (my eldest two came along too and it was so lovely!) The five of us went for a long walk around the lakes on the weekend. We are just doing what you do and being a family. 

My dad keeps thanking me for everything I do and mum thanks me everyday. They've told me that I make life so much easier for them and they couldn't manage without me. I think in this situation if they can say that to me still after four months we must be doing ok! 

I can feel the hugs and the warmth, and I am sending it right back too. I hope hope hope hope everyone is doing ok and please if anyone new is reading any of my story don't let it affect you in a negative way. Everyone's experience of cancer, treatment, the NHS is different. We have just been unfortunate but it is just one story. There are many others who have had a positive experience and are recovering right now! So just take it for what it is, one persons story. 

Xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hi migi welcome back we all just wish it was in better sercomstances it unbelievable how much trouble you've had with the hospital. at least it seems sorted now, , fingers crossed,, it's nice to hear your father is feeling a bit better now, it should have been sorted ages ago, hope you are still looking after yourself as well, good wishes,

Billy 

Welcome back :-)

Hi there!!

Thank you guys. I really hope everyone is ok here. I have missed you. What a roller coaster this "journey" is hey. 

Xxxxxxxxxxxxxxxxxx

Hi MiGi

Good to see you back, in a weird sort of way! I’ve been thinking of you and wondering how things were going for you. I’m so sorry about the way your dad has been treated, but am continually amazed by how you deal with everything that’s going on, and how you help others despite your own circumstances. Take care. xxxx

Hi my is name is maggie  my ex partner has stomach and lung cancer which he contracted from being in a prison cell that had asbestos in and now he has 2 months to live

Hi there hunny ...

So sorry it's been so long .. it was seeing your picture brought you back to mind ...  how are things now .. I'm thinking of you .. and what a hard , sad , journey you've travelled... but your made of tough stuff .. sounds like you take after your daddy ... 

Well if you ever feel o.k to come back and let us know how you are .. no matter how long ... would love to know ... sending you one of my spiecial nanny hugs to you .... 

Chrissie x 

Hi there hunny ...

So sorry it's been so long .. it was seeing your picture brought you back to mind ...  how are things now .. I'm thinking of you .. and what a hard , sad , journey you've travelled... but your made of tough stuff .. sounds like you take after your daddy ... 

Well if you ever feel o.k to come back and let us know how you are .. no matter how long ... would love to know ... sending you one of my spiecial nanny hugs to you .... 

Chrissie x 

Hi eveyone! Oh my gosh, I wish I had good news but I don’t. Well dad is still with us so that IS good but last time I posted I was full of hope and it went wrong. When we chased up dads appointment for the scan they promised they said it wasn’t necessary and when we chased up the blood tests they said that they were going to use the ones taken at the time of diagnosis. So basically they had fobbed dad off and gotten his hopes up for nothing. I don’t believe they had any intention of scanning him again and I don’t believe that they used old blood tests. If they did it’s even more disgraceful because they should have already known whether or not he was eligible for treatment but they said they checked this time and he’s not. It’s just hard to know what to believe and it took 6 weeks of us nagging to be told this. So dad was crushed Mum cried all the way home dad went into another depression. I don’t know how I felt. Angry I think and just like I knew from day one they aren’t interested. But he’s a bit happier now. He s getting much weaker and I’ve noticed he trembles a lot lately. He can’t eat proper food anymore. He has his fortisips everyday and a bowl of porridge but he said he’s getting to the point where he can’t stomach h porridge now. He can’t stand the smell of food it makes him sick so it’s hard for mum not being able to cook and they did have a bit of a row over it last night. He’s much more breathless so is on oxygen permanently. He’s had his pain medication increased a few times. It’s just hard like it is for everyone but we are getting on with it and trying our best. He sleeps a lot now and he can be too exhausted to talk but other days like today he’ll be laughing and chatting away. It’s so up and down. He did tell me that he didn’t want a funeral just a direct cremation but now mums decided she wants a small funeral with just us. She said it can be arranged with the crematorium directly that we go and follow the coffin in and watch him go. She said she needs to do that or else there’ll be bo closure type of thing ( I hate that word!) I’ve been trying to bring it up with him but I feel bad because he’s already told me what he wants but also I don’t want to keep from him what mums going to do after I promised him. So I’ve got to tell him. He won’t mind, he’ll know it’s just comfort for my mum but I just wish I didn’t have to say it. I’ll be the one organizing it see and I can’t  do that if I don’t tell him. Everything else is ok ish. There’s lots to be negative about but so much that’s positive too. My sons been staying at home for the summer my daughter is working at hospitals on placements now. My twins are just the cutest little fairies on the planet! It’s a really tough time for everyone but somehow we find the strength to pull through. Because everyone on here knows we have too! Big hugs and love to everyone. Xxxxxxxxxxxxxxxxxxxxxxxxx

Hi migi, I think it very rotten of the hospital to get your hopes up like that, [I actually thought of lot stronger words but there not allowed on forum], but to not even do tests it's unbelievable things could have changed with your father now nobody knows, wish there were better circumstances to talk to you, hope you get sorted about the cremation your stuck in the middle of it, best wishes.. Billy 

Oh my hunny ,

I can't imagine just how your still standing and not hitting out at everyone at hospital ... if you logged his story , no one would think anyone could go through so much ....  but right now, it feels like your dad wouldnt be strong enough for treatments .. and really would you want to see him go through that now .. theres a time to fight, and a time to count every day and make them as comfortable as you can .. just keep his pain meds working ...  

We saw my brother in law go from fit and strong to where, like your dad, couldn't bare food .. and he went to skin and bone ... that is really hard to see ... but wer all here, tagging on to your journey with dad ... all reaching a hand out ... and a shoulder to lean on ... he's one tough cooky your daddy .... 

So glad your kids are doing well .. sounds like they give you much to smile about .. which will keep you going ...ying and yang ... to differences to feelings to keep you grounded ...

Well always here ... sending a vertual hug to you and dad ...and mum too ... Chrissie  

Hello guys! Thank you, I’m so unhappy with the hospital and the way they’ve been but I haven’t had the energy to really challenge them. It’s silly things too like the oxygen service engineer turned up to deliver masks and he noticed that my dads oxygen was turned up to 5. He had a complete freak out with my mum and I. I told him that we’d been told by the consultant that dad could have between 2 and 5 when necessary and he asked if I had proof?! I didn’t know what he meant! But he went into a complete lecture telling us we weren’t doing my dad any favours and were going to give him oxygen poisoning and he went back and reported us to the hospital. So we had the oxygen nurse ring to tell us there were safety concerns and she was coming out. Mum freaked out completely and turned the machine off completely then dad had a funny turn, they called an ambulance and told them he’d oxygen poisoned himself. It was pandemonium. It took me two weeks to calm Mum down (autistic) I dealt with the nurse when she came out and it turns out that if your oxygen levels are increased, whoever decides that HAS to write a prescription for it. It’s noy enough for the consultant to just tell you he has to officially prescribe it in writing. I didn’t know that! How would I?! So I got a new prescription off the nurse etc but I was fuming with them oxygen company for scaring Mum and dad like that and at the consultant for telling us but not writing it out. It’s all fine now he’s on 24/7 oxygen but the fuss caused was awful and I’m fed up of telling the professionals to please tread carefully with mum because of her mental health. They don’t seem to realize that every time they do something like this it’s a major blow and Exhausting for my parents. It sent her over the edge and like I said 2 weeks to calm her down. The situation all round just feels crazy. We’ve never experienced it before so it’s all new, I think Igbo we knew more it might have been different but yes dad’s not well enough for treatment now, he’s way past that bless him. We are just trying to spend as much time as possible with him and we’re enjoying that bit even though it’s  hard to watch him fade away. 

But thank you for the hugs and messages. Sending hugs back to you guys. It’s just a case of staying strong and getting through it. I have so many people relying on me I can’t break. I think if I didn’t I might but the kids and my mum force me to stay focused. Xxxxxxxxxxxxxxxxxxxxxx

Just a thought ...

Have you called Marie Currie... they do so much in your dad's situation ...  I'm sure they'd help your mum cope if they knew about her health ... and they have trained staff to sit with your dad, and give you all a bit of respite ... go on their home page and give it a try ... nothing to loose hunny ...

Chrissie xx

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