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Dad given two months to live.

6 Feb 2019 09:45 in response to MiGi

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

Dad given two months to live.

6 Feb 2019 13:59 in response to MiGi

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

Dad given two months to live.

13 Feb 2019 07:55 in response to Brien

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. 

Dad given two months to live.

19 Feb 2019 19:28 in response to MiGi

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

Dad given two months to live.

19 Feb 2019 22:49 in response to MiGi

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

Dad given two months to live.

20 Feb 2019 09:35 in response to DebbiD

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

Dad given two months to live.

7 Mar 2019 07:12 in response to MiGi

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 ❤

 

Dad given two months to live.

7 Mar 2019 10:29 in response to Chriss

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.

Dad given two months to live.

7 Mar 2019 11:08 in response to MiGi

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 ❤

Dad given two months to live.

7 Mar 2019 18:36 in response to MiGi

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

Dad given two months to live.

7 Mar 2019 20:15 in response to Minska

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

Dad given two months to live.

7 Mar 2019 20:31 in response to MiGi

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

Dad given two months to live.

7 Mar 2019 22:29 in response to MiGi

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 ❤

Dad given two months to live.

12 Mar 2019 10:20 in response to MiGi

Hi. I’m also new to here and this is pretty similar to what I have experienced but with my mum, who has lung cancer also. Was a complete shock when she was diagnosed too. She has recently spent a lot of time in hospital and our experience has been similar to yours. The only thing we did was push to get mum moved to have her own room, once this finally happened after a week or so it as a lot easier to visit. The thing is that they’re so busy so it’s difficult. Sounds like we are in pretty similar situations so if you want to chat properly about stuff let me know. L x  

Dad given two months to live.

12 Mar 2019 10:36 in response to MiGi

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