Palliative Nursing

Hi All

Mum was diagnosed with T4 N2 Lung Caner last September. She's had 4 sessions of chemo (didn't work) at the end of last year/beginning of 2019. Then following a delay they then decided to do radiotherapy which was further delayed due to a pleural effusion. It was supposed to be 12 sessions but then was changed to 4.

Anyway, Mum has had a really rough time of it and has lost a lot of weight and it is not helped by her not eating. 

In May when I was able to attend, (I live 300 miles away) it turns out mum had another pleural effusion so they couldn't read the x-ray to see what effect the radiotherapy had. She went back to the hospital a week later to get the fluid drained and was advised not to as the previous time it hadn't achieved much and mum was in a huge amount of pain when they had previously done the procedure. A permanent drain was talked about, but nothing done, expect wait to see her oncologist 2 months later!

At this point it was only on reading the forum that I heard about the fortisips nutritional dink and I had to send mum details and she had to ask the doctor about this, that they then prescribed her the drink to try and boost her strength and encourage her to eat. 

Anyway move on another 2 months and she saw him on Friday. Mum has refused any further treatment (although to be fair the doctor had previously said they wouldn't do anymore chemo & no further radiotherapy on her lungs no matter what) & does not want a scan done to ascertain prognosis, etc, so she's now being passed to another hospital for what I understand to be palliative nursing, but that isn't for 3 months and the hospital visits are in theory going to be every 3 months.

Given that she's seeing the palliative nursing team only every 3 months, does anyone have any experience or knowledge of what is likely to happen/be done when Mum does attend and also why only every 3 months?

I'm very confused in any case why there has been such a long time in between appointments, typically at least 2 months every time with the oncologist, but with the latest info saying even longer in between the palliative nursing it feels like they've given up on mum, but have also not been very forthcoming on what she can expect with the various appointments and why they are doing what they are and no guidance or explanation of anything either. 

Any thoughts would be appreciated. 

I do get that mum is handling this the way she is because she is scared, but I'm also trying to get a sense of what is going on because it's incredibly tricky given the distance I am away from her and with a small child I can't leave and who I am going to have to prepare at some stage for the worst news about granny 

Thanks for reading x