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.