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

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

Hi there! [@davek]‍ and [@Brien]‍ 

 I'm so sorry it's taken me a while to come back, things have been a bit upside down but I have an update. 

Thanks so much for your help and advice. The only reason I haven't gone public is because I just couldn't bear the focus being on me I'd find it really stressful although I am going to sit down at some point and write letters to everybody who has failed him. I'll ask for your help with that guys when the time comes if that's ok? 

So, after a few days where mum was calling me every morning in pieces saying dad was very ill and not eating, wouldn't make it to Monday's appointment etc... He did survive and we went to see the cancer specialist. 

Originally like I told you he was given 2 months by the consultant who wasn't a cancer specialist. On Monday we saw the specialist who did his biopsy and she said that without treatment he has 6-12 months. He's got a letter with an appointment date with the oncologist coming out in the next week or so and will be offered treatment. So they haven't written him off like we thought. 

I'm a bit confused but I'm going with it. Dads gone down hill massively, every day he's getting worse. His neck is still in his chest, he's in agony but the physio therapist that came out literally popped in for twenty minutes last week because she was so busy. She gave dad some exercises to do but like we told her he's in too much pain to do it. However she said he has to try so we've been trying to help him do it. But basically on that we're all taking it in turns to massage his neck constantly to try to relieve the pain a bit and it's not improving. She can't come out this week but hopefully she'll come next week. 

The occupational therapist came out and couldn't do anything. She said his neck is like that because he's breathless and it's the automatic position we take when we can't breathe so there's nothing she can do about that except physio but it's hard to get an appointment. The consultant thinks it's because of the morphine so she changed his pain killers, however she made a mistake on the prescription so I couldn't pick it up, I'm going to get it this morning 2 days later. He's still not eating, but they keep saying the same thing little and often and drink fortisips. He got dehydrated on Saturday mum called the doctor and was told if he didn't drink a cup of water every hour he'd have to go to hospital that night so I sat there all day feeding him coffee, water and lucozade through a syringe because I know he doesn't want to go to hospital and luckily I managed to rehydrate him. He can hardly walk, is hunched over hardly talking and if he does talk it's one word and so quiet we can hardly hear him. The paliative care team couldn't come out this week because they're over booked but the consultant said they had to come out urgently yesterday however they didn't show up. The appointment is for next Thursday so I wouldn't be surprised if they stick with that despite the urgency. I'm just a bit sceptical. I hope they aren't giving mum false hope by now saying 6-12 months, longer with treatment. We feel like he's near the end but we're not experts but mum thinks we've got him for Xmas and that he can keep having treatment to keep him alive for ever. It's just a bit of a jump to give someone two months and then change it to a year? And he's so ill. 

I can't go back to work because I'm now looking after them full time. I drop my girls at school and go straight to mums to get him out of bed which takes literally hours because he's in such a state. I stay there until 3.15 when u pick up my girls and then I stay on stand by for them when dad has a panic or something happens or mum just breaks down and can't cope. I WANT to look after my parents but obviously I have to as well. I'm just really worried about how I'm going to manage. Mum begged me to look after them and said they'd fall to pieces without me and I know that I just need to find a way to cope. 

Yesterday I couldn't get him to drink much. That was sad. He took a lempsip (he has a chest infection) and water with his meds but that was it. I haven't heard anything over night but mum tries really hard not to disturb me in the night because I have little girls I have to get to school etc plus she wants me to sleep so I'm able to cope ok, which is so thoughtful but she's up most of the night with him because he keeps freaking out. He's hallucinating and going away with the fairies. He made me go outside on Friday to tell the children to stop playing on the road. He was totally stressed that they'd get run over but there were no children there. It's really sad. If he has moments where he can talk he talks about stuff that hasn't happened like he's been dreaming. I don't know. It's all over the place. 

My sons student housemates uncle got diagnosed with cancer last week, early stages but he's starting his treatment this week already. They live in Winchester. I thought dad would have started treatment straight away too. I'm just confused and tired. I didn't sleep all night. Normally I'm ok but it's all going around in my mind at the moment. 

Thanks for being there guys. 

Tracy. 

Hi,  

We had the appointment with the oncologist today. 

Hes got "a few months, not many" now and is not eligable for any treatment. The consultant said its about making him as comfortable and as well as possible now so that he can enjoy the time he's got left. I wondered how they jumped from 2-3 months to 6-12 months. Last week they said this appointment was to discuss his treatment options but today they said no. I don't understand it all. I knew they'd written him off. 

Xxxxx

Hi. I'm sorry to hear about your dad.  I'm in a similar situation with my sister. She is 47 and on 1 Nov 2018 she was diagnosed with stage 4 lung cancer with a pleural effusion (fluid around the lung) and was given 2-4 months. She had an operation to drain fluid which failed.  They tried it again and it failed again. She had one dose of immunotherapy but is very poorly and needs oxygen most of the day/night and has been told by her oncologist that the treatment hasnt responded as well as they thought so they are stopping it.  She then went to an oncologist appointment last week and was offered chemo.  She was given a week to make a decision as to whether she wanted to go ahead with the chemo treatment.  However during that week she was admitted to hospital as her leg swelled up and they found clots on her lung.  She stayed in for a couple of days and was discharged at the weekend. She has now asked her oncologist for another week to think about it as so much has been going on.  She has nurses round twice a week to drain fluid from her lung via a tube that is permanently in her.  She gets really out of breath just walking around her flat and has to sit down and have breaks if she goes upstairs. She has lost over a stone in weight and her muscles seem to be just disappearing. She has an oxygen therapy machine installed in her home.  I'm not sure if she will still be able to have the chance to have chemo because of the blood clots found in her lung but to be honest I'm not sure if she wants to do down that route anyway as the side effects could be really horrible and she has been told if it works it could give her possibly a few more months.  Maybe your dad is too poorly for treatment.  I think this dr probably has to weigh up the odds as to whether the treatment could make him worse than he is at the moment. It's absolutely heartbreaking watching a loved one suffer.  Take care x

Hi Debbie, 

I'm so sorry to hear about your sister. You guys are my age (42) that is so young to have such a devastating diagnosis. My dad is 61 and we were told that was young to have this. You're right, my dad is too poorly for treatment. He was diagnosed just under two months ago now and we thought we saw the oncologist yesterday but turns out he was a palliative care consultant so we haven't even seen the oncologist yet. In two months!! When my dad got diagnosed he was ok. Running about etc...., he had a chest infection which really hit him hard and at the surgery they sent him for an X-ray. He had pneumonia but something else was visible and the following day he had his diagnosis. I hate moaning about the NHS but reading back through my posts they've totally messed up with dad. Yesterday the doctor said that a lot of whether or not they give treatment depends on how the patient is actually feeling at the time. My dad has been left to suffer for two months and I honestly thought they'd written him off and I was right. They didn't rush to do anything. Just prescription after prescription of pain killers etc... They admitted yesterday they basically over dosed him in morphine for a month (we kept saying). Dad was ok until they did that. The day they increased his dose his neck froze into his chest, he was hallucinating, started with extreme panic attacks, didn't know where he was, dribbling all over the place. Obviously he stopped eating too. They only changed his medication last week finally and he's really started picking up, he's actually eating a bit now. But they've had the cheek to say he's not well enough for treatment now. Well really?!! You do that to someone for a month and then expect them to be fighting fit? First they said he had 2 months to live, a week ago a different consultant said 6-12 without treatment and desparately needed treatment, then we go there yesterday and someone else says no it's a few months and no treatment. My mind is just blown. We have a nurse come sometimes once a week or he might miss a week but he doesn't do anything just chats to us. It's up to mum and I to feed him (I feed dad through a plastic syringe now because they keep telling him to drink but he can't hold his cup) It's horrific. He keeps yelling out for help because he can't breathe and he's in agony and these panic attacks(he has never had anxiety). 

It sounds like they are looking after your sister a bit better though and hopefully if she can have the treatment it will help. I know a bit about blood clots in the lungs because I have a blood disorder so I've had 4 or 5 pulmonary embolisms myself but mine were treated with clexane, warfarin and now I take Rivoroxiban for life and touch wood I've been fine. Mine didn't start in my leg though although they aren't sure where they started. I keep uncrossing my dads legs every five minutes as I know crossing your legs doesn't help with that but there's so much going on in their bodies at the moment that your sister and my dad will have all sorts of issues. I cannot believe I am saying this but I hope my dad passes soon. I've used all my energy trying to encourage him to stay strong and be focused but he knew they weren't interested right from day one and he was right. I knew too but I tried to be positive and I tried to tell myself I was just being daft and impatient etc... 

Its so horrible. I hope you're ok though and looking after yourself because you have to be strong for your sister. 

Best wishes 

Tracy. Xxxxxxxx

Hi Tracy...

Oh my, I was looking at some of your answers to threads, and realised you've been up through the night .. so read your home page, and was so shocked at how much your dealing with right now, yet still trying to help others .. l dont think you realise just how wonderful you are... 

Your poor dad, and I know our N H S can be wonderful, but he's had a nightmare .. l was on morphine for a while.. and one day unknowingly overdosed ... it was the scariest day of my life .. l had was bring up black bile for 24 hours, like tar .. even sips of water made me sick .. now I'm on minimal dosage ....just when l need really need it ... it still diddnt stop the bad pain ..

Don't forget to look after you too ... if you fall, everything falls... so no mater how hard just do something's for you .. that way you'll stay stronger ... everyone needs a hand to hold ... I'm so glad you've come on here .. you couldn't have better advice then our Dave... think he's really looking after you...he's a wise ol owl... 

Have you tried Marie Currie... they specialise in terminal patents and their carers ... lots have found help and advice there... l was so surprised just how much they do ... they really seem to care ... and I think you need all the help you can get with dad ... go on their home page .. and give them a call ..

Chrissie

Aaaawww Chrissie, what a beautiful message and that's given me a lovely start to my day, thank you! 

Im not sleeping lately and seeing posts in the night where people are struggling with worry kills me. I want to jump out of my phone with a cup of tea and a hug for everyone and I can't. I also want someone to jump out and hug me which I feel like you did. Thank you. My dad told me again yesterday that it's in the night that things get too much for him. He panics and has really dark thoughts. He openly talked about his feelings of considering suicide yesterday that happen at his worst times. My mum was quite upset and it's hard to hear but I can understand and I would feel the same way seeing how he is compared to how he was. Things are worse at night and it's helping me too to be trying to offer some words that might help. It makes me feel like everything we've gone through is for a reason if only to be able to say to someone I know how you feel but really mean it. No body is ever really on their own if we can do that if that makes any sense at all? I'm on my third coffee trying to kick start myself to go and sit with dad for the day so a bit "hyped" maybe!! I've spoken to Macmillan (are they the same as Marie Curie? Or shall I call them too?) I've had support re my finances. Because my parents are both very unwell they've advised me to give up work altogether for now and to claim universal credit with the carers element. But I've just had all of my money stopped. I have to take some documents to the job centre and send some wage slips to the carers department so I'm doing that today. I have also been offered counselling AND so has my son!! I don't feel that I need counselling at the moment and my son has arranged his already through uni but I can also ring them if I need any advice too which is so lovely. I love love love looking after my dad, he keeps saying thank you to me but I've told him to stop, I wish so much this nasty cruel disease did not exist, the things you've been through/are living with, the things I hear, the things I know from seeing  it here. It's not going to break me but it has broken my mum. I am doing what you said and I'm pampering myself. I'm enjoying nice bubble baths, I'd let myself go so now I've swapped my wardrobe around so I can pick out pretty clothes to wear EVERY day now, I'm even taking ten minutes out every morning to put a little bit of make up on. I also bought a heated hair brush so I can just brush through quickly and look nice and I do a face mask now once or twice a week. I love pampering but I didn't bother because it seemed frivolous but it's my me time now and it makes me more able to deal with the world for some reason. I felt sucked under when I scraped my hair back and was in joggers. Now if I have a bit of concealer to hide the black circles and a bit of blusher I feel more on top of it if that makes sense? I also have such beautiful children, I wish I could post a photo! They are picture perfect! I wish I had answers, I can't find any. But being here makes me feel at home and I wish you so much love and hugs for today. Dave is fab! So is starcatone, I am very lucky! Have a lovely lovely day, let me know how you are when you have a chance.

Aaaawww Chrissie, what a beautiful message and that's given me a lovely start to my day, thank you! 

Im not sleeping lately and seeing posts in the night where people are struggling with worry kills me. I want to jump out of my phone with a cup of tea and a hug for everyone and I can't. I also want someone to jump out and hug me which I feel like you did. Thank you. My dad told me again yesterday that it's in the night that things get too much for him. He panics and has really dark thoughts. He openly talked about his feelings of considering suicide yesterday that happen at his worst times. My mum was quite upset and it's hard to hear but I can understand and I would feel the same way seeing how he is compared to how he was. Things are worse at night and it's helping me too to be trying to offer some words that might help. It makes me feel like everything we've gone through is for a reason if only to be able to say to someone I know how you feel but really mean it. No body is ever really on their own if we can do that if that makes any sense at all? I'm on my third coffee trying to kick start myself to go and sit with dad for the day so a bit "hyped" maybe!! I've spoken to Macmillan (are they the same as Marie Curie? Or shall I call them too?) I've had support re my finances. Because my parents are both very unwell they've advised me to give up work altogether for now and to claim universal credit with the carers element. But I've just had all of my money stopped. I have to take some documents to the job centre and send some wage slips to the carers department so I'm doing that today. I have also been offered counselling AND so has my son!! I don't feel that I need counselling at the moment and my son has arranged his already through uni but I can also ring them if I need any advice too which is so lovely. I love love love looking after my dad, he keeps saying thank you to me but I've told him to stop, I wish so much this nasty cruel disease did not exist, the things you've been through/are living with, the things I hear, the things I know from seeing  it here. It's not going to break me but it has broken my mum. I am doing what you said and I'm pampering myself. I'm enjoying nice bubble baths, I'd let myself go so now I've swapped my wardrobe around so I can pick out pretty clothes to wear EVERY day now, I'm even taking ten minutes out every morning to put a little bit of make up on. I also bought a heated hair brush so I can just brush through quickly and look nice and I do a face mask now once or twice a week. I love pampering but I didn't bother because it seemed frivolous but it's my me time now and it makes me more able to deal with the world for some reason. I felt sucked under when I scraped my hair back and was in joggers. Now if I have a bit of concealer to hide the black circles and a bit of blusher I feel more on top of it if that makes sense? I also have such beautiful children, I wish I could post a photo! They are picture perfect! I wish I had answers, I can't find any. But being here makes me feel at home and I wish you so much love and hugs for today. Dave is fab! So is starcatone, I am very lucky! Have a lovely lovely day, let me know how you are when you have a chance.

Oh my ... think we must be vertually related  lol ... it's like exactly how I feel .. though I've a few more years on then you ..  l find in reaching out, and vertually making some friends of the people on here, l get as much back as l give ... l feel blessed to have known them .. even if we could all pass on the street and never know it ..

Well there's so many who can only look at the whole picture .. then its overwhelming ... so you carry on treating your self .. I always have "me time" even give in to tears coz that's a safety valve ... and if you can keep your head above the water, later you'll meet others and can help them through .. your right, if we didn't have trauma through our lives, we wouldn't be here now, reaching out ...

I have trouble at nights sometimes too .. think our heads try to make sense of it all .. but if we can stay in the day .. and not look ahead and deal with one problem as and when it happens ... well get there .. your wonderful dad just wants it all to stop .. think I'd be the same .. no one should go through this much ..but it happens and we have to make the best out of a bad situation .. 

My sister is in late stage dementure .. she's turned from the best sis ever, that never swore and took a pride in herself to someone who's always angry .. and tells us to f off ... but l still see my wonderful sister as she was .. her daughter goes every day .. and the carers said to her, that her mum was so lucky to have her there no mater what her mum says .. she said "no I'm the lucky one, to have the best mum in the world"  sounds like you .. think you'd get on well with her .. l think you've both been sent here to be vertual angels to those you love ...

Give Marie Currie a ring.. they are different from McMillan... they help those in your situation .. they can sit through the night .. offer hours to sit if you need to go somewhere .. look on their home page .. well I'm determined to get out today .. I'm going stir crazy, as the weather has been horendious.  So take care .  . Always here if you want a chat ...  another big hug, coz we can never have too many hugs .. chrissie

Hi Tracy, I hope you don’t mind me jumping in here to say I have just been reading your posts and I think you are one of life’s outstanding people...inspirational and wonderfully caring. Helping others when you are going through so much yourself takes a very special kind of person.

I’m glad to see you are pampering yourself and giving yourself some time. You need that in order to be able to cope with the rest of your life. You are clearly very strong and capable, but everyone has their limits so remember to reach out for help for yourself when you need to...so many kind people in this virtual world here who will be happy to support and hug you from afar. xx

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.