Hi,

When my late wife was undergoing the so called pallative care I was absolutely furious at the way the MacMillan nurses spoke to her and the rest of the family. Their manner was very condescending and very insensitive, as was one of the registrars' working under my wife's Oncologist!

Needless to say, a letter has been written to that parrticular NHS Trust to bring my dissatisfaction about the experiences to their attention. Not every member of staff was like that though, some of the nurses were absolute Angels and went way above and beyond their job role, although all too often compensating for the incompetence and inexperience of other medical staff.

James

Mine's a remitting/relapsing cancer, so it was always just a question of when. My bloods are the best for years so I'm either having what's called a symptomatic relapse or I've got a solitary plasmacytoma. Will know in the next couple of days.

Hi, 

I know! My dad was diagnosed with stage 4 lung cancer and was told he had 2 months left in him, that was a month ago. On leaving the hospital after being admitted with pneumonia the nurse said "I bet you're dying for a cigarette now". We all just stared in disbelief then she said I'm so sorry I wasn't thinking. Okay!!!!!!!!!!!!!!

We were told about lots of things dad was entitled to like home visits from nurses, an occupational therapist, holistic treatments, help for mum too as she is unwell and dad was her carer. We were given phone numbers to call if dad needed anything, it sounded quite positive. 4 weeks later my parents are totally struggling on their own,  the palliative care team called once lady Thursday but couldn't give dad what they promised as the GP refused to write the prescription and everyone else is "so busy" at the moment. When we call the numbers we go straight to an answerphone but nobody calls us back. Eventually mum got through to a nurse yesterday as she wanted help with bathing dad and some help to make him eat and drink and also his neck has locked and he's in agony still which they said they'd look into last Thursday for him. When she came off the phone she said that he is on the list but they are really busy at the moment and still can't say when they can get someone out, but they said mum could pick up some special cushions for him and some kind of bed gadget thing tomorrow or wait 10 days for it to be delivered. We don't want gadgets we want help and support. And if I can't get these things in my tiny boot we'll be waiting 10 days for them anyway. Dad will be gone before we get any kind of help and mum will be in a psychiatric unit because she is not coping but does anyone care? No. I'm doing all I can but mostly just being there, doing the shopping etc things like that. But I'm not a nurse or a doctor and I know nothing about cancer and what's going to happen, I can't do anything to really help. Mum was angry yesterday and I don't blame her. There's no compassion. Xxxxxxx

Hi love, what a nightmare for you all.  This can be the case in many instances, whilst my husband was having chemo for stage 4 lung cancer our two dedicated McMillan nurses both took extended leave without telling us, that left us with a messaging service who had no idea how to help.  So have you contacted the Marie Curie nurses, my understanding is that they will help you to cope with end of life care.  We have brilliant nurses on the forum so ring them immediately and ask for help that Mum needs to cope.  Most of us parents know our children struggle with the impending death of a parent and try to protect them.  I truly hope this gets you some help.  Look after yourself as well.  Carol x