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

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