Wondering how best to help?

Hi everyone,

I am new to the group and am writing to gain a realistic perspective for my mum who is in a really bad way at the moment.

She was diagnosed with NSCLC with EGFR mutations in early Nov 2022. She was immediately given 2 steroids to take daily plus a strong sleeping pill whilst her Oncology team were able to come up with a treatment plan.

A week before Christmas, mum started on Osimertinib. By the time we saw her on Boxing Day, she was reduced to an almost zombie-like status - she struggled to stay awake, she was in pain, she couldn't communicate, she kept falling out of bed... 

My dad eventually took her for an emergency GP appointment and she was told she'd picked up flu and given antibiotics. No report of this visit was sent to her Oncology team even though the Dr would have seen how poorly mum was and known she was a cancer patient.

On the 12th January, dad took her to the one appointment she had in the diary to see her Oncology team. They admitted her straight away. A highly important salt level had dropped dangerously low caused by the steroids and she had developed a painful ulcer stopping her from eating or drinking.

Mum has been home from hospital after having treatment for her ulcer for a week. No call from Oncology or letter has been forthcoming for her next steps - she has been taken off all of her medication and is existing on painkillers only for now. Dad is giving her protein shakes as prescribed by the hospital but she is sometimes refusing to drink them as they taste nasty.

My brother, sister and I are all desperate for dad to ring the Oncology team to ask for a plan - we are shocked that she was discharged without anyone visiting her from Oncology to give her any updates. I am thinking of ringing her GP this afternoon (knowing mum's painkillers will be running low by now) to ask him to chase for news or even to see if he can do a house visit.) but need to be careful with staging an intervention with both my mum and dad. They would be devastated. Dad is doing his best but I know he is doing what mum wants - ie. if she doesn't want a shake - he won't force her. He is also not being 'proactive' - he has had plenty of days to ring for help but hasn't - I suspect he finds telephone calls difficult as never answers calls at home - mum always did.

I write here to ask any of you if any of what I've shared is normal or expected and whether you think as I do that mum needs to get back into hospital to be 'seen'.

Have any of you experienced someone you love putting obstacles in the way of their own care? How do I best support them without feeling like I'm telling them off all the time?

Am I being overly worried?

Any advice truly gratefully received.